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Yesterday Senator John Edwards posted a diary at DailyKos in which I posted this comment:

Senator Edwards; best to you and Elizabeth.

Big on my mind these days: educational opportunities for my high-functioning autistic son.  There's been tons of resources thrown at early-diagnosis and education.

But once beyond the early-elementary school age, public resources are non existent.  We are looking at a middle school situation where no plans have been made for educating a student population with an increasingly common diagnosis.

Going to mainstream kindergarten doesn't mean an autistic is "cured".  As our children grow, they're [sic; typing too fast!] needs change. The social landscape is much simpler for a 1st grader than it is for a 6th grader.

Today’s NY Times has an Op Ed piece which demonstrates precisely what I mean.

It is a call by the parents of a 4 y/o autistic for more funding for diagnosis and education of pre-school autistics.  In it, they state:

In America, you have to be lucky or rich to get proper care for your young autistic child.

Of course, this depends (1) what kind of autism your child has, and (2) how one defines “proper care”.  “40 hours a week of one-on-one” therapy is not the only appropriate or effective method of treatment; our son advanced rapidly in a state and federally-funded special preschool, which he attended for 4 or 5 afternoons a week.  Quite frankly, these parents are demonstrating little understanding of the spectrum nature of autism, and in doing so perpetuate some common myths:

Intervention is costly because it is essentially one-on-one.  Youngsters with autism spectrum disorders are hard to engage. They do not closely observe their environment or naturally imitate the actions of others.  Nor do they tend to seek out human interaction and communication.  Overcoming these barriers requires a highly individualized and intensive program. There is broad consensus, as reflected in previous studies by the National Academy of Sciences and American Academy of Pediatrics, that early and intensive intervention is critical. The core of most intervention plans, it is generally agreed, should be a cognitive method engaging the child’s intellect and emotions and sociability.

The highlighted sentences are not true of our son.  Some of his greatest frustrations stem from the fact that he does crave “human interaction and communication”, he is very interested in emotional attachment, but is very bad at figuring out how to “engage” with others.  Further, he is an incredible mimic, able to reproduce the nuance of dialogue he's memorized from his favorite movies.  However, being able to reproduce the vocal tones of sarcasm doesn't necessarily means he understands the meaning behind those tonalities.  

My son's official diagnosis is "high functioning autism".  He does not have Asperger's Syndrome — although he is quite verbal, his expressive language is much less sophisticated than those with Asperger's; he has problems with grammatical structure, pronoun usage, and tense.

He is nothing like Rainman; although he does have a tendency to fixate on certain subjects for periods of time, he is not an autistic savant, able to perform mental mathematics or draw with incredible detail.

He does not flap his hands, or twirl around, or pound his head against the wall; but he will pluck at his clothing as he tries to translate his thinking into words, slap his forehead with the palm of his hand when very frustrated and, occasionally (very occasionally, thank heaven!) regresses to biting himself.

My son is able to walk to a store by himself and make purchases, request assistance at the library help desk, meet people's eyes when speaking to them, form friendships with other children — he does most things appropriate for a ten year old boy.  He thrives on attention, holds conversations, and loves being hugged and cuddling with me on the couch, watching a movie.  Those with only a casual knowledge of the autism spectrum and who haven't spent much time with our son are often surprised to learn that he is autistic.

But he is autistic.  He has needed extra assistance in learning to handle doing the things a ten year old boy does.  He needs the opportunity to practice how to accomplish these "normal" things.  He is not cured, and still deals, on a daily basis, with limitations in understanding the non-concrete world of emotional motivations.  He can not separate "big deals" from "no big whoop".  To him, every mistake is major, every deviation a disaster, to be obsessed over for hours or days.  He frequently dissolves into tantrums and shouting when confronted with even the mildest frustration.  In addition, he officially has been diagnosed with an anxiety disorder, because he is constantly aware that he has limitations, anxious to please and be accepted, yet doesn't have the tools to deal with limitations that affect his acceptability.

In a perfect Catch 22, he knows that he has autism, and he knows that autism makes it hard for him to navigate emotionally and socially, yet at the same time doesn't have enough understanding of abstract concepts to understand exactly what it is that he is having difficulty doing.

Our son — thanks in large part to very experienced, sensitive kindergarten and first-grade teachers — thrived in mainstream classrooms his first two years of public school.  From the viewpoint of the parents of a 4 year old autistic, such as the parents who wrote the NY Times Op Ed piece, that accomplishment apparently is all that can be imagined, and they and they are not looking past those early educational years.

But we all can remember just how painful and difficult the middle-school years were.  Ask almost any adult about middle school and the response will be "wow, that really sucked".  We were so unsure of ourselves, of our ability to read other people, of our acceptability.  Now, try and imagine being in that situation as a young autistic, not just unsure of the accuracy of your perceptions, but knowing you're missing important information yet at the same time not understanding how much meaning is contained in facial expressions, hand gestures, vocal tone, volume and cadence.

We recently had our son re-evaluated at the JFK Center for Developmental Disabilities in Denver.  At the post-evaluation meeting, I expressed my frustration at the lack of planning and programs in the public sector for autistics of double-digit age.  The leader of the team told me that, when it comes to public and foundation funding, a majority of the available money is directed to studying the causes of autism, early diagnosis of autism, and early education of autistics.  In considerable part this is so because the common misunderstanding is that being able to function in mainstream kindergarten means the autistic is “cured”, and money is directed towards achieving that magic milestone.

But when it comes time to fund autism in adolescence, most of the money has already been spent on the autistics' early years.  There are few studies of what interventions might work for the teenage autistic and, consequently, few available programs.

So we have a wave of children like my son descending on our public middle and high schools, with no plans in place to help them navigate that difficult social world and usher them into an emotionally stable adulthood.  Yet on the Op Ed page of the NY Times is a call for yet more of the limited amount of funding available to be directed towards the pre-school autistic.

Originally posted to Franklin's Tower on Tue Nov 21, 2006 at 06:39 PM PST.

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Comment Preferences

  •  If you are interested in learning more (142+ / 0-)
    Recommended by:
    Ed in Montana, northsylvania, pb, pacifica, natasha, Fred in Vermont, TaraIst, RonV, Pandora, mem from somerville, Lahdee, Avila, Sprinkles, TheGreatLeapForward, Shockwave, Xan, SanJoseLady, choateward, histopresto, freelunch, acuppajo, The Maven, sobermom, PanzerMensch, Creosote, davelf2, sardonyx, shermanesq, RubDMC, monkeybiz, concernedamerican, joynow, ReneInOregon, Karen Wehrstein, krazypuppy, Wee Mama, mint julep, megs, sfgb, peacemom, ksh01, cookiebear, moiv, high5, roses, hrh, javelina, peraspera, peeder, lilnubber, high uintas, sele, wader, jakyra, campskunk, by foot, lapolitichick, Chamonix, hoolia, klayman, Caldonia, grayslady, churchylafemme, never forget 2000, snakelass, lcrp, jrm78, One bite at a time, KateCrashes, WisVoter, Lefty Mama, SanDiegoDem, kd texan, rapala, madaprn, joanneleon, Fabian, By The Root, SisTwo, deano, tzt, blueyedace2, franziskaner, lightnessofbeing, PBen, Melody Townsel, Hotspur18, station wagon, jorndorff, ladybug53, Kayakbiker, QuickSilver, blue jersey mom, abbeysbooks, MrExcitement, MaryCh, JanL, JPete, begone, axman, motherlowman, trashablanca, althea in il, Kingsmeg, emeraldmaiden, cwaltz, sessal, Magnifico, curmudgiana, OneCrankyDom, condoleaser, slandurgurl, FireCrow, MO Blue, myrealname, land of the free, vox humana, Daimon N D Ruff, va dare, righteousbabe, Dreaming of Better Days, MadMs, Bernie68, Friend of the court, ms badger, sea note, Iowa Boy, marykk, Cronesense, SomeStones, wa ma, WryCynic, edsbrooklyn, Mary Mike, profmom, phoenixdreamz, Oreo, urgello, Brahman Colorado, Hens Teeth, SassyFrass, FolsomBlues

    about the social realities of high-functioning autism, I cannot recommend highly enough The Unwritten Rules of Social Relationships by Temple Grandin and Sean Barrows (two people with autism who are very different from one another).

    Temple Grandin's Thinking In Pictures: My Life With Autism also is a "must read" for those who wish to understand more about people on the autism spectrum.

    Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

    by Frankenoid on Tue Nov 21, 2006 at 06:38:33 PM PST

    •  Also interesting (14+ / 0-)

      IMHO, is Oliver Sacks' An Anthropologist on Mars. That book is partly about Temple Grandin.

    •  You might also be interested in this novel: (8+ / 0-)

      The Speed of Dark by Elizabeth Moon

      The protagonist is a high-functioning autistic man.

    •  Reading "The Curious Incident of the Dog in the (24+ / 0-)

      Nighttime" (a novel) absolutely changed our understanding of our Asperger's son.  The protagonist is a teenage boy with high-functioning autism or possibly Asperger's as he's depicted as a math whiz.  But the book is amazing in terms of how the author (who worked with autistic children for over a decade) takes one inside the thought processes of a high-functioning autistic young person, and makes the reader see the world through his eyes.  It helped us SO MUCH in terms of how we could help our son.  We bought a copy for everyone in our extended family and they agreed that they learned so much from it. It helped them approach our son as a human being with his own experience, rather than what they had been doing with him, which was approaching him through the lens of disability.  I totally recommend this book to anyone interested in helping an autistic person.

      •  I do the same thing (5+ / 0-)

        with Thinking in Pictures.

        While I enjoyed "The Curious Incident...", the protagonist in the book is very different from our son (though much like our other son's Aspie friend).

        Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

        by Frankenoid on Tue Nov 21, 2006 at 07:36:52 PM PST

        [ Parent ]

        •  Another recommendation (1+ / 0-)
          Recommended by:
          Frankenoid

          Thanks Frankenoid for your diary.  

          For you child I would also recommend "Super Silly Sayings That Are Over Your Head".  Good book for children with high functioning autism, helping them navigate idioms.  Published by Starfish Specialty Press, the same group that puts out "Autism Quarterly" magazine.  You can find it on regular book sites like Amazon, Barnes & Noble, or the publisher's site.

          My better half is the author/illustrator.

          Listen to The Wilflipson Show at http://wilflipson.com

          by wilflipson on Wed Nov 22, 2006 at 09:24:44 AM PST

          [ Parent ]

      •  Great book! (2+ / 0-)
        Recommended by:
        Xan, Frankenoid

        I would absolutely recommend this book.  It was amazing.

        "But I do think one thing we can all agree on is that this country is overdue for a cheesehead president. We've never had one." --Russ Feingold

        by kkshedevil on Tue Nov 21, 2006 at 07:44:15 PM PST

        [ Parent ]

      •  I hate the curious incident book (0+ / 0-)

        I have no sense of humor about any situation where a man puts a pitchfork through his neighbor's dog and leaves it to freeze to death, leaving his son to take the blame when the boy gets caught investigating the scene, when there don't appear to be any real consequences for the adults involved in bad behavior. The boy was the only pragmatic one around, autistic or not, and no wonder he can't understand a world where many of the adults around him are devious, and deviant. Certainly he behaved in autistic ways, but please-

        all of us are pupils in the eyes of God

        by SassyFrass on Tue Nov 21, 2006 at 08:16:55 PM PST

        [ Parent ]

        •  I'l have to read the book, but... (4+ / 0-)
          Recommended by:
          Adam T, davelf2, javelina, SassyFrass

          Pragmatic?  Oh, yes, Asperger's children are often extremely pragmatic!  The eddies and currents of emotions and relationships can be of little concern to them.  They are 'reality based' people and find known facts easier to deal with than the shifting tides of personal politics.

          We must never lose it, or sell it, or give it away. We must never let them take it from us.

          by Fabian on Wed Nov 22, 2006 at 12:42:52 AM PST

          [ Parent ]

          •  I deeply resent the tone of that comment. (1+ / 0-)
            Recommended by:
            Frankenoid

            Oh, yes, Asperger's children are often extremely pragmatic!  The eddies and currents of emotions and relationships can be of little concern to them.  They are 'reality based' people and find known facts easier to deal with than the shifting tides of personal politics.

            You say that in the same tone that a so-called 'expert' I once read talked about the well-known ties between autism and mathematical ability.  (And I don't mean idiot savants -- I mean 'regular' upper-level math skills and programming abilities.)  Just because something is related to a deficiency doesn't mean it can be dismissed as a failure.

            I'm an Aspie.  Am I too pragmatic?  Probably, yes.  But at the same time, that can be considered a good thing.  Emotional involvement in a situation is often something that hinders people from doing what needs to be done or from making important decisions.  And emotions often prevent people from seeing situations as they really are.

            •  I meant pragmatic (2+ / 0-)
              Recommended by:
              Fabian, lemming22

              as a compliment, in context of a bunch of adults behaving badly.

              all of us are pupils in the eyes of God

              by SassyFrass on Wed Nov 22, 2006 at 11:25:18 AM PST

              [ Parent ]

              •  I got that. :) (1+ / 0-)
                Recommended by:
                SassyFrass

                My comment was aimed at Fabian, who clearly sees it as a defect.

                •  I do not! (1+ / 0-)
                  Recommended by:
                  SassyFrass

                  Geez!  Pragmatism is wonderful.  But Asperger's people may insult or ignore people they interact with because they are focussed on results and not touchy feely relationship building moments.  An overture to simply talk may be seen as a simple request for information. Giving hints, beating around the bush and being subtle can be counter productive with Asperger's people.  They aren't likely to be looking at contexts and subtexts in order to figure out what people are ineffectively trying to ask or tell them.  Be simple, be direct and be literal with Asperger's people to get the best results.

                  We must never lose it, or sell it, or give it away. We must never let them take it from us.

                  by Fabian on Wed Nov 22, 2006 at 02:17:37 PM PST

                  [ Parent ]

                  •  and that was my concern: (1+ / 0-)
                    Recommended by:
                    Fabian

                    "Be simple, be direct and be literal with Asperger's people to get the best results."

                    This might not be the best book to hand to an Asperger's youngster, even though regular teens are able to see that a pitchfork through a pet is way beyond the boundaries of the social norm (not to mention a disgusting crime- would you place a child in a home of a man who could do that?)

                    all of us are pupils in the eyes of God

                    by SassyFrass on Wed Nov 22, 2006 at 03:18:53 PM PST

                    [ Parent ]

        •  Thanks for spoiling (3+ / 0-)

          the plot

        •  If you get past the contrived plot device (3+ / 0-)
          Recommended by:
          Xan, Frankenoid, SassyFrass

          of the pitchfork and the dog, you have to admit that it's a wonderful effort to get inside the head of a character who is autistic.  

          And it's not unrealistic to depict a world where often there are no real consequences for adult bad behavior.  We live in such a world-- at least I do.

          •  "if you get past the plot device" (0+ / 0-)

            was my point. Sicko plot device- I wouldn't hand this book to someone who might take things literally and pay great attention to details like that. It was well written, with great insight and description, and, well- a sicko plot device to start the ball rolling. Penalty for unnecessary roughness.

            all of us are pupils in the eyes of God

            by SassyFrass on Wed Nov 22, 2006 at 10:27:59 AM PST

            [ Parent ]

      •  fantastic book (1+ / 0-)
        Recommended by:
        elmo

        I found myself rocking a bit as I read.

      •  Curious Incident... (2+ / 0-)
        Recommended by:
        peacemom, Frankenoid

        I took me three months to read that book because it was so painful. Having a description of the chaos that goes on everyday in my son's head was like a daily root canal.  But, after I finished crying, it was helpful in understanding some of his reactions to situations.

        The constitution does not provide for first and second class citizens - Wendell Wilkie

        by ms badger on Wed Nov 22, 2006 at 07:55:53 AM PST

        [ Parent ]

        •  Be careful not to overgeneralize (1+ / 0-)
          Recommended by:
          lemming22

          as neurotypical folks so often do. Unless you can ask your son whether there is chaos in his head every day (and he can answer you), I wouldn't make an assumption that a fictionalized account of one autistic person's brain chaos describes the state of another autistic person's mind.

    •  She is wonderful isn't she? (3+ / 0-)
      Recommended by:
      Xan, javelina, Frankenoid

      And her mother was as marvelous in her way as Helen Keller's parents were in theirs.

      I've read Foots book on Washoe the chimp and towards the end of it he talks about working with signing with autistic kids and that they learned to speak rather quickly after they learned signing.

      I would like to know if you did signing, why or why not? And anything else you can tell me.

      •  We did not (13+ / 0-)

        Our son wasn't officially diagnosed until he was five, for various reasons.

        First was that he was a preemie, and some of his developmental oddities could have been due to that.

        Second was that he had chronic ear infections -- his delayed speech could have been a result of his not hearing well, and his tantrums (he had very severe tantrums starting at about 18 months) an outgrowth of that.

        He started seeing a speech therapist at about two and a half, but the therapist couldn't make much progress with him because of behavior issues.  She referred us to ChildFind, and we began getting interventions for him through ChildFind as soon as he was eligible at age 3.  The preschool he went to went back and forth as to whether to recommend testing for him -- as they put it "well, in some ways he shows very typical autistic behaviors, but in other ways -- he's so sociable and loving -- he doesn't".  The final recommendation was to go for testing, and that's when we got the diagnosis, when he was in kindergarten.

        Surprisingly, what has helped his speech problems more than anything is the advent of DVD's.  He's always loved movies, and with DVD's, we could turn on the subtitles, he could read along (he's always read well), which helped him understand language form and structure better.

        Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

        by Frankenoid on Tue Nov 21, 2006 at 07:42:40 PM PST

        [ Parent ]

        •  Frankenoid, (12+ / 0-)

          thank you for this diary! I have one high-functioning nephew who seems just below Aspbergers, as he tends to make animal sounds in class, though high functioning in graphics and computers. I have another nephew (other side of the family) who is much "more" autistic, who identifies all his relatives by shape, number and President (!) and cannot look anyone directly in the eye. I also teach music, and I know many of my students are not completely connected with the "reality" of the world most of us experience. Some cope and deal with reality in other ways.

          There is my point of understanding with autism. I think not only is it a difficulty, it is a blessing. I wish I knew how to experience the five senses as intensely as do some with autism. My own opinion is that there is much yet to be researced between autism and synesthesia. I know I would have to shut much out in order to experience life at that level of intense experience.

          I wish you and your family the best. I hope you and your son may have many more productive points of communication as he ages and grows into a sense of himself.  May the process bring you peace!

          The law is slacked and judgment doth never go forth: the wicked compass about the righteous and wrong judgment proceedeth - Habakkuk 1:4

          by vox humana on Tue Nov 21, 2006 at 09:42:31 PM PST

          [ Parent ]

        •  Communication and Autism. (6+ / 0-)

          This year I did the required behavioral survey for both my five and three year old, who are both in special ed preschool for language delays.  (The older one is in for CP too.)  It is fairly obvious they are looking for behaviors associated with autism - inability to adapt, inability to cope, fixations and so on.  It was also obvious that my sons aren't bona fide autistic.  They deal with change and adapt but without adequate communication skills, they act out too.  "Use your words!" is a daily reminder to my oldest.  

          Life without communication is difficult.  My youngest son isn't being devious when he gets snacks down from the top of the refrigerator.  He's just hungry and with no way to communicate his need to me, he simply solves the problem on his own.  Communicating with my older son can be straightforward or a guessing game.  Sometimes when he's acting out, I just sit him down alone and ask him "What. do. you. want?".

          Maybe my kids will end up with a diagnosis of Asperger's or something in the autism spectrum.  But right now, when my youngest gets on all fours and bumps his forehead against the floor in protest, I just translate that into "NO! I don't want to!".

          We must never lose it, or sell it, or give it away. We must never let them take it from us.

          by Fabian on Wed Nov 22, 2006 at 01:14:01 AM PST

          [ Parent ]

          •  You could be describing (6+ / 0-)
            Recommended by:
            pb, Xan, javelina, snakelass, WisVoter, Fabian

            Ian as a toddler!  He did the bashing his head on the floor thing, too -- and we did a lot of guessing about what he was trying to say.

            Ian seems to have some auditory processing problems.  He was trying to talk, but the words were garbled.  The breakthrough came from goddamned Barney videos.  He'd watch them over and over again, memorize the dialogue and repeat it.  Because we, too, would have the dialogue memorized, we could figure out his mangled words.  Then it was a matter of having him watch our mouths as we repeated the words so he could see how to pronounce them.

            Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

            by Frankenoid on Wed Nov 22, 2006 at 04:26:17 AM PST

            [ Parent ]

            •  Barney videos (2+ / 0-)
              Recommended by:
              Xan, Frankenoid

              Friends of ours with a high-functioning autistic son have found he gets a lot out of Thomas the Tank Engine videos - about which my personal feeling is ... aaaaagggghhhhh, get me out of this room before I have to listen to one more emetic sentence!

              But if it helps, it helps.

              They're lucky in that he was diagnosed at two, so intervention has come very early, but of course they're up against all the same things you are.

              The cause of America is in a great measure the cause of all mankind. - Thomas Paine

              by javelina on Wed Nov 22, 2006 at 07:29:57 AM PST

              [ Parent ]

              •  We were grateful when he switched (2+ / 0-)
                Recommended by:
                Xan, javelina

                his allegiance to Blues Clues.  Much less annoying.

                Oddly, one of his favorite movies as a 3 y/o was The Truman Show with Jim Carrey (he still loves Jim Carrey).  My theory is that Carrey's face is so hugely expressive that Ian could "read" it -- kind of like a large print book.

                Of course I get tired of the umpteenth viewing of Ace Ventura: When Nature Calls.  We've learned that it is OK to put a limit on movies that we find annoying.  He can watch them for a week, and then they have to "go away" for at least a month.

                Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

                by Frankenoid on Wed Nov 22, 2006 at 07:34:43 AM PST

                [ Parent ]

            •  Did you try sign language at all? (end of comment (1+ / 0-)
              Recommended by:
              Fabian
              •  The youngest is in an intensive classroom. (0+ / 0-)

                They try image cards, signing and spoken communication.  Signing isn't taking.  Speaking is creeping along(about the same as his brother).  He's picking up on the image cards some.

                The big problem with him is merely paying attention.  If you can't get someone's attention, then it's difficult to communicate with any method!

                We must never lose it, or sell it, or give it away. We must never let them take it from us.

                by Fabian on Wed Nov 22, 2006 at 02:22:37 PM PST

                [ Parent ]

          •  Our son wandered down the street without (6+ / 0-)
            Recommended by:
            pb, Xan, javelina, Frankenoid, Fabian, ms badger

            telling us, which gave us heart and panic attacks for months.  Until we realized that it was another of the "doing things without having words to ask for them" situations, and not his trying to run away from home.  We sat him down and asked him why he went down the street and he said "because I want to see how far I can get."  So we explained very clearly and simply and firmly that the rule was that he had to ask one of us before he left the driveway.  He had to ask permission, that was the rule.  And so he gradually learned to do that, and it was fine.  

            Our son is very, very responsive to rule-based behavior explanations.  It makes it so simple for him to have something stated as a rule.  He remembers it and functions well according to it when it's phrased that way.  As his memory is so acute he never forgets what is explained as a rule.  And it's simple compassion to explain things he needs to do as rules, because he can't figure out what the right thing to do is as he doesn't pay attention to what other people usually do in x or y situation.

            •  That works well for smaller children (6+ / 0-)

              but as they get older, rule-based behavior doesn't always work; they need to be flexible enough to respond to variable situations.

              My son knows the rule is: do your homework every night.

              However, there are occasional situations -- unexpected visitors, family emergency, special events -- where the homework can't be done.

              It would send him into a tizzy if he hadn't "done his homework"; doing 25 minutes of required reading, rather than 30, would ruin his whole day.

              He's had to be taught that it's OK to read 30 minutes a day on average -- the important part is that he reads every day for an extended period.

              And that when things happen that prevent him from doing his homework, it's OK for mom or dad to write a note to the teacher, explaining what happened, and that he won't get "in trouble" (he greatly fears getting "in trouble", because then other kids might think badly about him).

              Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

              by Frankenoid on Wed Nov 22, 2006 at 06:25:50 AM PST

              [ Parent ]

              •  The therapists who have been working with our son (3+ / 0-)
                Recommended by:
                pb, Xan, Frankenoid

                have been practicing exactly this sort of flexibility adaptation with him.  It's a long road to learn it, but he's gotten better.

                He still is highly inflexible, and depending on the change or alteration of schedule, on the kind of "exception to the rule," he becomes quite panicked or angry.  Or at least, bulldog-persistent in terms of questioning "why"?  --As in,
                "why did you say that?"
                "why did we not do that?"
                "why did you tell me that would happen, when it didn't happen?"
                "why did you do that?"
                over and over and over and over and over again....

          •  something to try if you haven't already (2+ / 0-)
            Recommended by:
            pb, Fabian

            When she was little, my daughter could never answer open ended questions (e.g., "what do you want to drink?") but she could answer choice, or "either/or" questions (e.g., "do you want apple juice or orange juice?"). We also used her echolalia to "feed" her lines of dialog. I'm not sure whether this approach worked, or had no affect on her language development, but she did develop normal language eventually.

            •  Ian did a lot of (0+ / 0-)

              echolalia which was, in fact, a great tool to teach him to speak.

              Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

              by Frankenoid on Wed Nov 22, 2006 at 10:56:29 AM PST

              [ Parent ]

            •  "More, please." (0+ / 0-)

              That was my oldest's first request phrase.  It was a step up from grunt and point but a long way from a varied vocabulary.

              The frustrating thing for both boys is that their cognitive functions seem fine.  But despite their apparent ability to process language coming in, there is no correlation between their understanding language and using it.  Very frustrating filling out various surveys for school when you have to answer N/A or "no" because your child is giving you no reliable feedback.  

              We must never lose it, or sell it, or give it away. We must never let them take it from us.

              by Fabian on Wed Nov 22, 2006 at 02:28:28 PM PST

              [ Parent ]

              •  I hear you and can relate (0+ / 0-)

                As frustrating as this can be for us, it's probably even more frustrating for our children.

                The first time my daughter threw up was right after she was able to force out her first words. It was that much of a struggle.

        •  Excellent idea (4+ / 0-)
          Recommended by:
          pb, Xan, Frankenoid, ms badger

          Turning on the closed captions - that would help ANY reader-to-be.  We're going to do that.

          My son, also special needs, has some of the autistic tendencies, but not enough to be diagnosed as autistic.  Things like the speech delays, the pounding of the head (I got real good at fixing drywall).  Occasional temper outbursts when little (yup, got the basket hold nailed), but as he has grown up he has better control.

          We've been lucky in our school support systems and doctors.  We're also very determined parents.  I see that thread running thru the voices here, also.  We're a bunch of tiger Moms and Dads when it comes to our kids!

        •  Early detection... (6+ / 0-)
          Recommended by:
          pb, Xan, peacemom, javelina, Frankenoid, ms badger

          Really can make all the difference.

          Our eldest son, now 8, was initially diagnosed as "profoundly deaf" at age 18 months, after he developed a latent measles infection/ecephalopathy six months earlier.  It took another nine months to determine his hearing was perfect, and he was instead profoundly autistic.  He started in a full-time (35 hours/wk) ABA (enhanced with some Floortime) theraputic preschool at 21 months and continued until kindergarten.  Today, he sounds quite a bit like your son, though maybe a year or two behind on the trajectory.

          I picked up on our younger son's regression almost immediately after it began (at 20 months) and he was quickly enrolled in the same program, then moved to an even stricter ABA setting (May Institute) at age three.  His improvement has been much, much less dramatic, sadly.  But it's still there, as at least now he has some language and can follow basic directions.

          For us as parents, the biggest challenges have not been getting our children the care they needed - Maine was absolutely amazing for us (both children also received 25 - 30 hour "in home support"), though we both did need to essentially quit working to care for both boys (and their neuro-typical siblings) in those early years.)  Instead, it has been getting the general public, and more specifically, local, state and even federal bureaucrats to understand that autism is a physical disability, not just "bad parenting".  We've been travelling across the country with the boys (and NT girls) for eighteen months now, working on a couple of projects along the way (a book on travelling with autistic children being one of those.)  We travel in a relatively nice trailer, and stay mostly in state and national campgrounds.  

          Rigth now, we're in a Santa Barbara, California, county park.  Our youngest son has severe "elopement" issues (he wanders/escapes whenever he has the opportunity) like many, many children with austism (just Google and see what you come up with.)  Two days ago, for the first time in the two weeks we've been here, I got distracted with a malfunctioning generator outside the trailer, and he was gone down the beach.  We had to ask help from the rangers to retrieve him, as he's gotten too great a head start, as people who he'd passed by assured me he had not gone that way.  A half-hour later, my husband and a ranger had him, safe and sound (and clueless as to our frantic concern.)  Yesterday morning, we were informed by the head ranger, speaking for the county sheriff, that if we asked for help again due to his elopement issues, we'd be evicted from the park.  For them, it's merely an issue of "neglectful parenting", not our son's disability.  In Maine, we had an alarm system installed, and he still escaped from the house on more than one occasion.  He's autistic, not mentally incapaciated.

          This is a very common reaction, though moreso since we arrived here in California.  Though we had some run-ins with bureaucrats in Iowa as well.  Oh, and Michigan.  Okay, North Carolina too.

          It's been less than forty years since Bruno Bettelheim's globally accepted "theory" of maternal detactment ("refrigerator moms") was debunked.  For many of these power-wielding (un)civil servants, that watershed event obviously escapes them much more often than Jonah does our (nearly) ever vigilant watch.

          DraftGore2008: If we build it, he will run...

          by mbw on Wed Nov 22, 2006 at 07:08:58 AM PST

          [ Parent ]

    •  Joe Barton (TX) holds up Autism bill (19+ / 0-)

      we have a Rethug that's been holding up Autism research bills in Congress.

      Combating Autism Act of 2006 - The People Speak Out Against Barton!!!
      Joe Barton Denies Combating Autism Act of 2006

      Frankenoid, do you have opinions/experience with this?

      Barton is also the guy who tried to kill Net Neutrality btw.

      David Harris, an Iraq veteran, ran against Barton but lost in a red district.

      Perhaps next time?

    •  I recently read (4+ / 0-)
      Recommended by:
      Xan, javelina, Donna in Rome, Fabian

      There's a Boy in Here, and found it to be the best description I had seen yet of the difficulties of life in a family with autism. So glad to learn there's more from him.
        I read Thinking in Pictures, and speaking as a somewhat temperamental creative artist, it seemed to me that some of what she was describing had it's real roots in the way creative people tend to picture things, and that was not strictly part of the autism itself.

      all of us are pupils in the eyes of God

      by SassyFrass on Tue Nov 21, 2006 at 08:10:21 PM PST

      [ Parent ]

    •  I can't tell you how much I like her writing (4+ / 0-)
      Recommended by:
      Xan, javelina, Frankenoid, joanneleon

      I've read bits of "Thinking in Pictures."  Can't say enough about her.

      War is not an adventure. It is a disease. It is like typhus. - Antoine De Saint-Exupery

      by Margot on Tue Nov 21, 2006 at 09:50:46 PM PST

      [ Parent ]

    •  Currently (1+ / 0-)
      Recommended by:
      Frankenoid

      I'm reading Pretending to be Normal by Liane Holliday Willey.  It's a great book for anyone interested in what the world is like from the perspective of those of us with AS.

      •  Sounds good (2+ / 0-)
        Recommended by:
        Xan, Frankenoid

        Our high-functioning daughter does just that. Her teachers in school would remark how baffling it was that sometimes she acted her age and then would act much older or younger. I tried to tell them that she was doing just that - acting. She didn't instinctively know how to act so she'd imitate the actions of others around her.

        One nation, under surveillance, no liberty, nor justice for us

        by SisTwo on Wed Nov 22, 2006 at 05:48:01 AM PST

        [ Parent ]

    •  Further, but more complex, reading (2+ / 0-)
      Recommended by:
      Frankenoid, joanneleon

      For more technical information, see some of the work in the British Object Relations psychoanalytic tradition, which places intense attention on early childhood. Someone with a therapeutic interest in working with children (and others) with autism might be interested in seeking out books by the late Frances Tustin, including:

      Autism and Childhood Psychosis (London: Hogarth, 1972)

      Autistic States in Children (London: Routledge and Kegan Paul (rev. ed 1992)

      The Protective Shell in Children and Adults (London: Karnac)

      Tustin worked intensively with children and child analysts, and was a keen and deeply compassionate observer. Her books include case histories and valuable original theories on the origins and treatment of autistic states.

    •  Your son sounds like... (10+ / 0-)

      ...a lot of the kids I work with daily. I'm a clinician at a Lindamood-Bell Learning Processes center, and we work with kids all over the spectrum who have one unifying quality: difficulty with language processing in one form or another. Some of the autistic kids I work with are severe and will never be able to be mainstreamed; some are already mainstreamed, and we help them keep up with the work they're given; one of them (one of my favourites) you would never know anything was wrong -- except that when he's trying to make a point, he has to touch my hair, or he can't be certain I've understood him. I honestly didn't realise before I started working with these children and young adults what a spectrum it really is. We not only don't have two students alike, we don't have two students even remotely the same. There is no blanket theory. Each student is an amazing individual who deserves better than to be overshadowed by individuals and systems on account of the word AUTISTIC stamped a piece of paper.

      What sort of breaks my heart daily is the knowledge that we don't 'cure' these kids -- we give them the tools they need to understand the words and world around them, but no child on the autism spectrum will ever leave our center as 'normal' as other children of her/his age group. At the same time, 'normal' is overrated. These students I work with are who they are both in spite of and because of their mental processing differences, and I wouldn't presume to take that uniqueness away from them in the name of trying to force them to think the same way as everyone else.

      Sometimes the need to mess with their heads outweighs the millstone of humiliation. --Fox Mulder -5.63, -6.97

      by lady sisyphus on Wed Nov 22, 2006 at 04:31:49 AM PST

      [ Parent ]

      •  Precisely (1+ / 0-)
        Recommended by:
        Frankenoid

        Only when I came to an appreciation of my son's gifts was I able to understand his limitations in a way that helped see him as a unique and integrated person.

        The constitution does not provide for first and second class citizens - Wendell Wilkie

        by ms badger on Wed Nov 22, 2006 at 07:59:28 AM PST

        [ Parent ]

    •  The cover story in Newsweek (2+ / 0-)
      Recommended by:
      Frankenoid, Unduna

      this week is titled 'Growing Up with Autism'.  I have not read it yet, so I have no idea how it is, but it may be of interest to you.

      I've worked with autistic children in the past, and know of some of the challenges they face.  And you are very correct.  As they grow into the later school years, they will face even more challenges.  Thank you for this.

    •  My son is on the autism spectrum (1+ / 0-)
      Recommended by:
      Frankenoid

      but he is not autistic and he does not have an Asperger's diagnosis.  Like your son he does not fit the norm for the autism spectrum.  I am so thankful that I was able to give him a great deal of therapy (mostly homebased) to rewire his brain.  It seems to have helped a great deal.

  •  I highly recommend this diary. (42+ / 0-)

    I have two children on the spectrum. One is severely autistic and the other has been rediagnosed as PDD-NOS.  When my husband and I separated, many thought my husband had trouble dealing with our severely autisitic son.  The truth is, the one that is more higher functioning was the one we have trouble with. He goes bezerk over the most stupid things and demands constant attention. The worst part is, I am constantly being reminded that it is my fault because I don't discipline him.  I just had to get that off my chess.

    The president of the United States is not a fact checker. - Dan Bartlett, White House Communications Director

    by franziskaner on Tue Nov 21, 2006 at 06:47:20 PM PST

    •  Oh, I know what you mean (16+ / 0-)

      the stuff that Ian gets himself in knots over.

      My husband's niece is severely autistic, so we've had some experience at that end of the spectrum.  I can understand your point of view.  However, at least we have the reasonable expectation that our son can be independent in adulthood, while my inlaws don't have that comfort.  A trade-off, I guess; and you have the worst of both worlds.

      Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

      by Frankenoid on Tue Nov 21, 2006 at 06:50:57 PM PST

      [ Parent ]

    •  This sounds very similar to my daughter. (13+ / 0-)

      She has 22q11 deletion syndrome.  She becomes so easily frustrated and flies into a rage.  She'll become so upset over something that just seems trivial to the rest of us.  And she is 8 and becoming more aware of her limitations and differences, also. This is heartbreaking.

      So, franziskaner, let me take this opportunity to remind you--IT IS NOT YOUR FAULT!!! Don't listen to anyone who tells you otherwise.

    •  Our son is exactly that way, and what Frankenoid (27+ / 0-)

      describes about not being able to distinguish between "big deal" and "no big whoop" and the anguishing and tantrums---- absolutely that's the road our son is walking.

      He is Asperger's-- incredible facility with language, very advanced and able to communicate verbally-- and despite that strength, his ability to use language doesn't help him necessarily understand what others are intending and especially doesn't help him figure out the contexts of what people are saying or of what is happening around him.  The non-verbal contexts.  And that's one of the classic and distressing symptoms of autism that doesn't change-- the not paying much attention to those around them, the not "cueing" themselves in accordance with what others are doing or showing to them non-verbally.

      Our son is an only child and so part of his constant demand for attention is that he has no other playmates.  Also, from an early age he preferred to be around adults because he spoke at their level and was speaking about things they were more likely to understand (more likely than 3 and 4 year olds that is).  And we are the adults in the house with him.  So he gloms on to us and it can be exhausting.  

      One way I try to deal with it is to tell myself that this is my precious child whom God has given to me to share and to teach and to learn from.  In giving myself to this situation I am in with him-- his craving for attention, his constant meltdowns-- I have learned so much about myself, about my weaknesses and my strengths, about the mysteries and limits of love.  And that's part of my road to walk.  Accepting it is opening myself more fully to my own life (though sometimes it makes one want to scream and just run away, of course, I don't deny that).

      •  how old is he? (3+ / 0-)
        Recommended by:
        Xan, concernedamerican, franziskaner

        Is he reading?

        Yes, there are still FEMINISTS on Daily Kos! Join the fabulous Supervixens every Thurs. night.

        by hrh on Tue Nov 21, 2006 at 07:57:16 PM PST

        [ Parent ]

        •  6 1/2 and reading beyond level. (6+ / 0-)

          He is way beyond level in visual "reading", memorization, and perceptiveness of many things.  

          He loves to be read to, and then, when it's bedtime, he spends hours-- literally hours-- in bed with the light on, reading to himself.  

          •  Sounds like my son! (7+ / 0-)

            He started reading at three and is also 6 1/2 now.  He stays up late every night, either reading, or drawing his own stories.  He narrates as he draws them, though recently he has started drawing them more like comic books.  He's an absolute nut for anything to do with science and history.

            We have never had him tested for the autism spectrum.  We've gone back and forth on this, because he certainly has some of the outward signs including ever changing repetitive tics (they usually last a few months and then he goes on to the next one -- one time it was rubbing his cheek, another time it was running the length of the house and stopping at the door, etc).  

            Our perspective may sound odd, but our feeling is that his somewhat eccentric behaviors are the other side of the coin of his incredible intelligence.  He is emotionally intense, deeply empathetic, and never stops thinking, absorbing or learning.  When you consider how differently a child with high giftedness thinks, it's really no wonder that they seem from the outside to be a little odd.

            He's actually very popular at his school (a charter school using the International Baccalaureate curriculum with a strict no-bully and inclusiveness philosophy).  The kids in his class think he's great and he's enjoying being a Tiger Scout as well.

            When we thought about having him tested, we wondered what we would do with the information.  We didn't really want to change him in any way.  So, at this point, we have jumped into his intensity with both feet and are enjoying the ride.

            When the world was born, it was born on fire, and I'm watching it burn.--RealWest

            by hillaryk on Tue Nov 21, 2006 at 08:48:53 PM PST

            [ Parent ]

            •  I'd encourage testing (15+ / 0-)

              I have AS, and was much the same when I was his age.  I was beating contestants at Jeopardy when I was in first grade, I had the school record for books read in a year, and was already beyond my 3rd grade science books in terms of understanding.

              The flip side is that despite being a friendly, intelligent, and helpful person I was always on the outside looking in for social situations.  My parents justified it the same way, that my giftedness put me beyond where I could relate to other kids, or that my intelligence could be intimidating to others who weren't quite as smart.  But that was only half the story.

              The other half was that I couldn't relate to them because I didn't understand that other people weren't as interested in niche topics as I was, and I was intimidating because I didn't know when others wanted me to stop (talking/playing/staring).  I clearly wasn't autistic because of my verbal skills, and once that was ruled out they moved on to the other fad diagnoses of the day: ADD(for the odd behavior) and Depression(for the social withdrawal, isolation, and depression it caused).

              I'm sure your son is a sweet, charming, and well spoken child.  Most with AS are surprisingly "mature" for their age and relate better to adults.  However, trouble relating to peers can cause serious problems later including turning to violent outbursts, or other "last resort" attempts at communicating with a world that just doesn't understand.  

              I realize that this is just an anecdotal response, but I've spent the last year since my diagnosis trying to piece together the clues from my childhood that were missed so that I can help point them out to others.  If you have any questions, feel free to email me.  psychictoaster@gmail.com

              Otherwise GRASP is an organization that represents those with AS and they have links to many resources by state.  Autism Speaks is an organization that mainly caters to parents of children on the spectrum.  

              •  I so appreciate your comments... (0+ / 0-)
                I really do.

                It's been a really fascinating, frustrating and exhilarating experience raising Miles to this point.  His younger brother is also very bright, but doesn't exhibit the same sort of outward signs of brilliance and eccentricity, which is a bit of a relief for us in a way!!!

                I wish you good luck with your explorations!

                When the world was born, it was born on fire, and I'm watching it burn.--RealWest

                by hillaryk on Wed Nov 22, 2006 at 09:44:06 AM PST

                [ Parent ]

                •  I don't. (0+ / 0-)

                  I was diagnosed when I was in high school, and not only didn't it help me, it set me into a spiral of depression which I didn't fully get out of until the middle of college.  My mother says it helped her understand me better, but the message I got from it was that, not only was I currently socially impaired, I couldn't get better.

                  It was only once I actively rejected my diagnosis that I was able to force myself to go out and socialize.  I honestly believe the only thing that I gained from my diagnosis was a heightened level of social insecurity and a firm convinction that I can never be normal.

                  (Don't get me wrong -- the medication I got (Risperdal) is fantastic.  But if someone had handed me the medication without telling me what it was for, I would've been infinitely better off.)

                  Maybe I'm too harsh with myself, but I just don't see the diagnosis as being at all useful, except maybe during school.  These days, by the time that I'd get close enough to someone for me to possibly consider telling them about my diagnosis, they've already made up their minds about me.

                  So, in short, as I see it, a diagnosis solves nothing.  You're still going to have problems.  All a diagnosis does is call attention to them, and label them as abnormalities rather than eccentricities.

                  •  can't "get better?" (0+ / 0-)

                    Nonsense. Sorry, don't mean to be blunt, but that's just not true.

                    Anything you need to know about social interaction can be learned if you can find someone to teach you. It's not going to be easy, it's not going to be quick, but it can be done if you want to learn.

                    •  I said that ... (0+ / 0-)

                      ... that was what I got out of it.  And that was the message I was given.

                      I'm still incredibly touchy about the subject, but to put things bluntly -- I strongly distrust psychologists, I have my pride, and I would never bring myself to sitting down and having someone insult me to 'help' me get better.

                      Maybe that's stupid, I don't know.  All I know is that psychologists have never helped me in the past, and I have no reason to trust them in the future.

                      •  This isn't something typically covered (1+ / 0-)
                        Recommended by:
                        Fabian

                        in psychologists' training. It isn't mental illness. It's just autistic people don't seem to be born with the social rulebook that neurotypical people have.

                        I'm teaching my daughter explictly what's in that rulebook...to the extent I know myself (grin). I'm a little bit spectrumy, too.

                        Maybe it's true that my daughter will never be like a neurotypical person in that she'll never have that innate social barometer, but if she can learn what she needs to have relationships that are satisfying to her, what difference does it make?

                        A pox on the psychologist that gave you such a negative message.

            •  Your child sounds very (4+ / 0-)
              Recommended by:
              Xan, javelina, snakelass, franziskaner

              similar to an Aspie my elder son is friends with.  He was a magnet for other kids in elementary school because he could draw and would do these complicated comic book stories.

              Why have him tested?  Well, information can never hurt, but lack of information can.  While an Asperger's kid often copes very well in lower grades, middle school on up becomes very difficult.

              Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

              by Frankenoid on Wed Nov 22, 2006 at 04:34:40 AM PST

              [ Parent ]

              •  There's another reason for testing (1+ / 0-)
                Recommended by:
                Fabian

                Our daughter was diagnosed with PDD:NOS several years ago.

                Our primary reason for getting the diagnosis (we knew she had some spectrum disorder, so fundamentally it didn't matter) was that once the label was applied to her, a host of services opened up - for instance, she was able to use her alphasmart and keyboard her answers to problems instead of being forced to hand write her answers (for whatever reason, handwriting is difficult for her).

                Of course the label also means that she uses it as a crutch, which can be quite annoying ("I don't have to behave "normally", I have Ausbergers")...

                •  Exactly (1+ / 0-)
                  Recommended by:
                  Fabian

                  without the diagnosis you don't get the services.

                  Our elder son -- ADHD, not autism -- is another one who can't write by hand.  We taught him to type early, he used an alpha smart, and now, as he's 13, we're looking at getting him a notebook computer.

                  And -- yup -- being on the spectrum does not keep kids from being manipulative.  Ian will have "melt downs" at school when he doesn't want to do an assignment, or say he's "starting to get frustrated, I need a break".  You have to get really adept at reading him to figure out when he's faking!

                  Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

                  by Frankenoid on Wed Nov 22, 2006 at 10:59:46 AM PST

                  [ Parent ]

            •  Sounds like hyperlexia! (5+ / 0-)
              Recommended by:
              Xan, snakelass, Frankenoid, franziskaner, Tally

              Which is, in fact, a very common trait for kids on the spectrum. Your son, however, sounds like he understands what he's reading, which is an important thing to watch for -- some spectrum kids can read the New York Times at two, but can't tell you a summary of 'Cinderella' at sixteen.

              I'm with PsychicToaster -- testing may be beneficial. As I said in an earlier comment, I work with kids on the autism spectrum, and a spectrum diagnosis is not only not the end of the world, it's often a very useful insight (for you and your child) as to what's going on inside his brian. And bear in mind that you don't have to do anything with the information, not now or ever, but if anything ever changes, it would always be nice to have earlier data to return to.

              Best wishes for your son, who sounds like a marvelous young gentleman!

              Sometimes the need to mess with their heads outweighs the millstone of humiliation. --Fox Mulder -5.63, -6.97

              by lady sisyphus on Wed Nov 22, 2006 at 04:40:22 AM PST

              [ Parent ]

              •  Our son was tested when he was four for (2+ / 0-)
                Recommended by:
                Xan, Frankenoid

                giftedness and at that point he hadn't progressed far in his therapy at all, and was nigh on impossible to test.  The psychologist was very nice and took 2 1/2 hours with him on a 1-hour test.  She went through the results with us and explained that in only two areas could she get him to sit still and listen long enough to answer the questions-- verbal and spatial.  He tested at just under gifted level, and she said that given his mindset and resistance, he most likely would test higher were we to test him again--- but that he needed extensive behavioral therapy first to make it possible for him to comply with the situation of test-taking in the first place.

                So that's what we've been doing for the last two years.  He's made tons of progress and as the school district we're in doesn't do gifted placement until the kids are 8 anyway, we're going to wait until then to see if he makes more progress and matures more, before having him tested again.

                In the meantime, the teachers tell us he's "way beyond his peers" and "so high intellectually" and "super sharp."  Which is GREAT for him because they can relate to him that way, which is very self-confidence building for him.  

                •  Does your school district have (2+ / 0-)
                  Recommended by:
                  Xan, Hens Teeth

                  a "twice exceptional" program?  The one in Denver doesn't start until 3rd grade, but it's a good placement for a lot of kids on the spectrum.

                  Our elder son was in the twice exceptional classroom from 3rd to 5th grade -- ADHD and highly gifted.

                  Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

                  by Frankenoid on Wed Nov 22, 2006 at 06:27:30 AM PST

                  [ Parent ]

              •  Thanks so much (0+ / 0-)

                Thanks for your thoughts, I appreciate the input.  I really appreciate the respectful tone that everyone took in responding to me as well.

                Happy holidays!

                When the world was born, it was born on fire, and I'm watching it burn.--RealWest

                by hillaryk on Wed Nov 22, 2006 at 09:40:29 AM PST

                [ Parent ]

            •  Maybe give him some autism/psychology books and (0+ / 0-)

              let him decide whether he wants to be tested.

              •  Brilliant idea! (0+ / 0-)

                Seriously, you made me smile.  We have actually tried to involve him in a lot of the decisions with regard to his schooling because he's so aware. In fact, we almost skipped him to second grade this year, but decided against it with assurances that he would be given challenging material while working on his writing skills (like Larry Osterman's daughter this is an issue).  When we decided this, we brought him into the room with the teachers and administrators and discussed it together.  In the end, I think we made the right decision, because he is in a school that loops, so he has all the same classmates and teacher from last year which is helpful with the social stuff, I think.  

                I really want to thank all of you who made comments on my post. You've shared some very good insights and have some good points about testing.  I'm going to discuss it further with my husband as we drive down to DC for Thanksgiving.

                When the world was born, it was born on fire, and I'm watching it burn.--RealWest

                by hillaryk on Wed Nov 22, 2006 at 09:39:26 AM PST

                [ Parent ]

          •  He's a bookworm (3+ / 0-)

            Most kids aren't.  So maybe he seems odd to others.  I think he'll be OK.  Just my sense.  I was like that too, as a child.

            Yes, there are still FEMINISTS on Daily Kos! Join the fabulous Supervixens every Thurs. night.

            by hrh on Tue Nov 21, 2006 at 10:27:43 PM PST

            [ Parent ]

            •  I was too. It's been so interesting to me (6+ / 0-)
              Recommended by:
              Xan, javelina, Frankenoid, Spandau, Fabian, JFinNe

              to recognize so much of myself in him.  Who knew about Asperger's in the mid-1960s?  As I look back on it maybe I had quite a bit of Aspie in me too.  I remember clearly preferring books to kids my age as kids did things I didn't understand and I just never could seem to figure out why they grouped together as they did and what their codes were for social interactions.  It was lonely.  Books were friends.

              •  well, to be honest, (0+ / 0-)

                books are much more interesting than most kids.  Kids who are well-read and culturally literate don't have many "peers".  

                I remember when I discovered Thorne Smith at the age of 8, none of my friends knew what the hell I was talking about.  The only people with whom I could share my enjoyment of the books were old farts who had read them in the 1930s.

                Now my 6-y.o. son is discovering that the other kids in first grade haven't seen A Hard Day's Night and don't know who the Beatles are.  Much less David Bowie, his other fave.

                Yes, there are still FEMINISTS on Daily Kos! Join the fabulous Supervixens every Thurs. night.

                by hrh on Wed Nov 22, 2006 at 08:21:05 AM PST

                [ Parent ]

      •  There is a great need for middle and teen year (3+ / 0-)
        Recommended by:
        Margot, Xan, snakelass

        intervention. I was attacked and a friend of mine was seriously threatened by a teen-age co-worker with Aspergers, who truly didn't get the difference between a smile and "no problem" or a desperate gasp and "you're really hurting me." Management said I was "discriminating" against him when they fired me because I refused to work with him any more, especially alone, late at night. He had not yet discovered alcohol or guns, but...

        We have such a huge wave of these predictable/unpredictable people coming, and understanding and compassion are wonderful, but those won't help at the moment you can't breathe.

        all of us are pupils in the eyes of God

        by SassyFrass on Tue Nov 21, 2006 at 08:32:24 PM PST

        [ Parent ]

        •  We do not allow our son (12+ / 0-)

          to use autism as an excuse for bad behavior.  It may be a reason for why he behaves in a certain way, but that just means we need to find a way for him not to behave that way.

          We are quite adamant with friends, teacher, daycare providers: if Ian is acting out, the behavior must be stopped.

          How can he learn to fit in, if people excuse the very behaviors to cause him to be rejected?

          Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

          by Frankenoid on Tue Nov 21, 2006 at 08:59:06 PM PST

          [ Parent ]

        •  Lifelong systems and support needed (9+ / 0-)

          My now-almost-40 autistic/Asperger's* brother was most emotionally disturbed and least adaptive -- and least educationally and socially supported -- in the 21-24 years. State DDD served provided for an alternative education (later vocational training) up to age 21 -- and then everything ceased (at this arbitrary age-cutoff unrelated to development or capacity for independence). Much chaos and strife then ensued in his life and our family's as a whole. (* I've never been sure of actual diagnosis/label; none of these words was as well defined in 1960's & 70s.)

          We hear much about autistic children, and much of the focus revolves around the discovery and diagnosis by the parents -- first coping with shock and grief and then advocating for early-education intervention and then coping with the day-to-day and year-to-year. Autistic teens and youth are less well recognized and supported. And as adult siblings of such individuals know, autistic children and autistic youth become autistic adults -- austism/Aspergers doesn't go away, their parents age, and siblings may increasingly take care.

          Another perspective from a sibling: The autism/Asperger's is and always has been a part of our lives. There was no diagnosis crisis or shock in my experience -- it occurred before I was born. The fact that we were a family with an  autism/Asperger's individual affected me and our whole family pervasively and all through growing up.  The experience for parents is undoubtedly much, much more difficult. But as siblings we grew up with it, had our own childhood and youth profoundly affected by it. Just a different perspective.  

          Reality - Humanity - Sustainability

          by Em on Tue Nov 21, 2006 at 09:40:43 PM PST

          [ Parent ]

          •  As a parent it is (8+ / 0-)

            a delicate balancing act.

            Our elder son is highly gifted and has ADHD; temperamentally, our sons could not be more different.

            At times our older son is very protective and understanding about his little brother (you should hear him rave about the "Autism Speaks" commercials; he hates those -- his brother does not need to be cured, he needs to be understood....)

            At other times his little brother is an annoying little brother, and he delights in using his verbal mastery to send Ian into fits (and Ian does the same thing to Emerson; yes, autistics can indeed do emotional manipulation!)

            Emerson realizes that being in a family means supporting your family members emotionally and, sometimes, financially; he sees me and his father do it for our siblings.  So he knows that at some point his father and I won't be there anymore, and watching out for Ian will fall to him.  But we don't want that to be too heavy a burden, either.

            Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

            by Frankenoid on Tue Nov 21, 2006 at 09:53:31 PM PST

            [ Parent ]

    •  Our family, too. (8+ / 0-)

      The other day, I told my wife I mistook her for a hat.

      And she said, "Are you putting me on?"

      We won! And we have YOU to thank for it!

      by AdmiralNaismith on Tue Nov 21, 2006 at 07:56:02 PM PST

      [ Parent ]

    •  Our 4 yr old is also PDD NOS (8+ / 0-)

      He was diagnosed when he was 2.  We are fortunate that because we live in Wisconsin, our son is eligible for Medicaid assistance which pays for his therapy (~20 hrs per week) and the school district we live in is considered the best in the state for handling kids with austism spectrum disorders.  He's such a sweet little kid now and very bright.  He can already read to a certain degree, is quite at home on a computer and obsessed with cars (both toy cars and real ones).  On the other hand, he has little interest in interacting with anyone other than my wife or me or his therapists.  He's only begun to talk within the last couple of months, but I think that to anyone other than his immediate family, his therapists and pre-school teachers his speech would be largely unintelligible.    We are already kind of anxious with what his life will be like once he gets into kindergarten and beyond, and we can only wonder at how he will change as he gets older.  We can only hope that as he moves into pre-adolescence and beyond, we'll have a comparable level of support so that he can make it through reasonably well.

    •  Wow!! (10+ / 0-)

      I can't believe I am reading this ! I am autistic myself,and this is just what my father told my mother ,for years.I thought it had something to do with the fact he is from a conservative Mennonite Farm family.Specifically he complained my mother never beat me enough.It has only been recently,now that he is old,sick,and dying of cancer that he realizes he was wrong.

      I was severely autistic myself,and I went through it all.The destructive behavior, the obsessions,the spinning,the inabilty to verbalize,and socialize,(I still cannot do either of these normally,btw.)the dislike of clothing,the delayed development,the urge to simply wander for hours on end,etc. .

      All of my family eventually abandoned me,except for my mother,who has continued to stick with me to this day.I don't know where I would have been without her.I don't know if this has been the case with you,but it is not unusual,in such families.

      I also have a serious PANDAS-like condition,that first emerged when I was a baby.I spent decades looking for a diagnosis,for my immune condition.I finally received one a few years ago, a diagnosis I had to bring to my doctor,myself.When I was diagnosed with Autism,in the first grade,the picture of Autism was very different than it is now. The "whole body"/"whole patient" model of Autism,as a  complex neuroimmune syndrome,would never have been considered.

      BTW,if you have any inclination,towards clinical medical knowledge,I would highly recommend the Yahoo! Autism/Immune group.

      "Power always has to be kept in check; power exercised in secret, especially under the cloak of national security, is doubly dangerous."William Proxmire

      by Rothbardian on Tue Nov 21, 2006 at 11:12:34 PM PST

      [ Parent ]

    •  Oh, ye gods! (7+ / 0-)

      Never let an authoritarian type mix it up with an autistic!  The authoritarian is convinced the child is defying them while, in reality, the child's behavior is an internal struggle.

      I still remember my husband demanding my son ask for a food item by name.  This was despite the fact that my son had never uttered the word in his life and had a vocabulary of less than a dozen words.  

      We must never lose it, or sell it, or give it away. We must never let them take it from us.

      by Fabian on Wed Nov 22, 2006 at 01:28:41 AM PST

      [ Parent ]

  •  i love Temple Grandin (20+ / 0-)

    it's been a few years since i read her, but i was simply stunned by everything about her: her accomplishments, her life, her ability to allow us nonautistics into her world

    thanks for posting this. it seems that anymore, kids with special needs of any kind are either shuttled aside or medicated until they become merely complacent and no longer a problem.

    engaged parents like you will be the solution, though. keep at it until you finally crack the doors open.

    i wish i could say teachers could be more of a solution, but the profession itself is under such an onslaught of complete bs that most teachers i know are already up to their necks in battles from all sides.

    so you and yours need to organize and kick butt. keep at it!!!

    Cornbread is square, but pi are round.

    by cookiebear on Tue Nov 21, 2006 at 06:50:59 PM PST

  •  Excellent diary (24+ / 0-)

    Many of us are aware of the growing incidence of autism, but are not aware that funding is skewed heavily toward early diagnosis & early education. I studied a bit about severe autism and music therapy a while back, and I remember that much of the research I'd read was working with children under the age of 10. I didn't realize that most middle and high schools have little or no strategies on how to better educate and socialize autistic children.

    Do you think that NCLB has had any affect on autistic education? My understanding from some teachers is that special education has been severely impacted by some of the NCLB regulations. I've only heard this from the teacher's point of view, not from the parent's perspective.

    I wish you good luck in finding ways to educate your middle- and high-school on the needs of highly functioning autistic children like your son.

    I remember a time when the American President was the leader of the free world. ****** Repeat after me: "Neoconservatism has failed America."

    by land of the free on Tue Nov 21, 2006 at 06:51:34 PM PST

    •  And Herzog's movie (5+ / 0-)
      Recommended by:
      Margot, Shockwave, javelina, Frankenoid, Fabian

      Every Man For Himself and God Against All about the 17th or 18th century young man that was found as an adult standing in the square in the morning in Germany. Had been shut up in a cellar all his life, couldn't speak, read or interact in any way. He was taken in and tutored by an enlightened intellectual and it is his story and an amazing one. Clearly he is autistic but which came first?

      And he is murdered at the end. No one knew why except that it seems someone was afraid his real identity would come out.

      But Herzog is one of Germany's and the world's finest filmakers.

    •  I wondered about NCLB too (3+ / 0-)
      Recommended by:
      javelina, Frankenoid, WisVoter

      I asked my son's teachers and therapists about this at an IEP meeting last year.  He has PDD and spends about half his time in the special-needs class, and half in with the 'regular' kids.  In Ohio, students are required to have 4th, 6th, 9th, and I think also 12th grade proficiency tests.  I asked them about my son taking these tests-- wouldn't that skew the school's results?  Aren't schools required to eventually achieve 100%, or their funding is cut?  They told me that when he takes the tests, they won't be counted in the school's performance record.  So it's like a placebo for him, he won't feel left out-- and a lovely waste of time for the school, but bureaucracy will have its way.

  •  I don't have anything meaningful to say. (17+ / 0-)

    I just wanted to thankfully acknowledge your post.  And your family and how you make it through the days.

    jotter's Lists of High Impact Diaries: daily and weekly archives (bring your own bendy straws)

    by sele on Tue Nov 21, 2006 at 06:52:31 PM PST

  •  I saw a special describing that... (16+ / 0-)

    sometime this past year.  I think it was one of the ABC news shows.

    They showed several families with kids who were teenagers, and who were going to need ongoing help as they became adults as well.  I don't think it was all autism, but the situations were similar (mild Down's?).  And there were other major life points that were going to be issues later--aging parents, etc.  

    It was clear that we were just seeing the beginning of this issue.  More kids are coming to face this, as you point out.  

    They didn't offer any answers, just highlighted the problem.  

    I wish I knew what to do.  Mitt Romney is about to cut Department of Mental Health funding here.  Which is a separate issue, I think--why is mental health different from physical health anyway??

    •  Our school system has worked hard to mainstream (8+ / 0-)

      kids with disabilities in the lower elementary grades. My sense is that there is much less support for these kids beginning in the upper elementary grades. Some of the students end up in out-of-district placements.

      •  Exactly (16+ / 0-)

        Our son currently is in a public school elementary program that provides support for his developing communication and social skills (it's called ICOMM -- intensive communications).  His classroom has 20 mainstream kids, 10 special needs kids, a teacher, a speech pathologist, and a para.  My son has his own one-on-one para, meaning there are 4 adults for 30 kids.

        But it ends this year.  Next year he's a 6th grader, in middle school, and there is no formal program.  The plan -- endorsed by JFK -- is to keep him at his current school, which is a K-8 school (not all Denver schools are).  That way he'll be in familiar surroundings, with people that know him, with the same peer group, and with a smaller middle-school population.  Less chaotic than a stand-alone middle school.

        The problem is getting a bus for him.  The school is 8 miles away, cross town, and driving him is incompatible with our work schedules.  But, as he'll no longer be going to a specific special-ed program, he doesn't automatically qualify for a bus.

        We're working on that (and I do know how to raise hell).

        Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

        by Frankenoid on Tue Nov 21, 2006 at 07:01:58 PM PST

        [ Parent ]

        •  I just think kindergarten is scary. (3+ / 0-)
          Recommended by:
          Xan, javelina, Frankenoid

          My oldest son is on his third year of special ed preschool - with the same teacher!  Next year is mainstreamed kindergarten - new teacher, new classmates, new school.  I never thought that I would view kindergarten as a big step.

          We must never lose it, or sell it, or give it away. We must never let them take it from us.

          by Fabian on Wed Nov 22, 2006 at 01:48:25 AM PST

          [ Parent ]

          •  What has always helped Ian (3+ / 0-)
            Recommended by:
            Xan, javelina, Unduna

            when switching to a new school -- or a new classroom for that matter! -- was taking him to see where he would be going, and to meet the teacher, before school started.

            Ian will start acting out before a change or exposure to a new situation because he is afraid that he won't be able to handle it.  Anything we can do to calm his fears, and to let him know that there is a way to take a break if he's getting overloaded helps.

            Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

            by Frankenoid on Wed Nov 22, 2006 at 04:40:38 AM PST

            [ Parent ]

        •  Is he on an IEP? n/t (0+ / 0-)
          •  oops, above question is to Frankenoid n/t (0+ / 0-)
          •  Oh, gawd yeah (1+ / 0-)
            Recommended by:
            javelina

            I have two kids with IEP's!  Gets interesting sometimes: Ian's review date is his birthday in mid-May, right as the school year is winding down, so it's often hard to get the meetings scheduled.  Elder son's date is early in the school year, when things are gearing up, so it's also hard to get the meetings scheduled!

            And those tri-annual meetings; jeez!

            Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

            by Frankenoid on Wed Nov 22, 2006 at 05:19:02 AM PST

            [ Parent ]

            •  If the current school (1+ / 0-)
              Recommended by:
              Frankenoid

              is Ian's LRE (Least Restrictive Environment) then transporation should put on his ed plan as a related service.

              •  Yeah, that's the argument we will make (0+ / 0-)

                to get a bus.  Denver is very stingy with transportation, and will fight tooth and nail to avoid having to send a bus.

                Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

                by Frankenoid on Wed Nov 22, 2006 at 05:58:09 AM PST

                [ Parent ]

            •  I'm sure you know this, but (2+ / 0-)
              Recommended by:
              Xan, Lefty Mama

              you can call a review meeting early. As a spec ed teacher, I frequently try to spread out my IEP meeetings and a parent who wanted to try and schedule an IEP in a less hectic time would be a real blessing to me. April would be fine, you know? Just saying.

              While I'm at it, thanks for a great diary. This is a crucial issue, not just because we need to start seriously considering the needs during the teen years, but because we also need to seriously address what role these lovies can play in our society. Each and every autistic has an important role to play in our communities, and simply "domesticating" them isn't going to cut it for them or us. These are fascinating, wonderful people who have an enormous amount to share with us. We need to begin to include these guys in dynamic and productive ways.

              Also - happy happy you that he is such a strong reader. Literacy changes the world of the autistic child dramatically, yet there is very little focus on how to provide a truly effective literacy education for these children (especially the mods and severes) who need it most. I'm working on that.... :)

              Best of luck with your transportation dilemma. Seems like if there is an IEP (especially if it is two or more domains), then he is part of the exceptional program and would immediately qualify, but I guess that's different from state to state. Go whup some butt.

              "In all chaos there is a cosmos, in all disorder, a secret order." Carl Jung

              by Unduna on Wed Nov 22, 2006 at 07:28:55 AM PST

              [ Parent ]

            •  Frankenoid, your IEP should be solving these (0+ / 0-)

              First, as is mentioned below, you should be able to call an early IEP.  

              Second, if your IEP does not meet your child's educational needs - INCLUDING transportation, extra help, equipment and special materials, you need to demand that it be put in the IEP (under the "services and supports" section).  If it doesn't get in there, then you should refuse to sign the IEP.

              The problems you're describing have solutions in the IDEA.  Most parents just aren't assertive enough about their rights.  

              My son has mental and physical disabilities and is deaf.  In addition, I have worked in the Special Ed Law field and on ADA law issues.  

              Sometimes it sucks to be the parent that causes so many problems, but I think if that's what I have to do to get what my son needs, then it's worth it.  Also, the teachers have always been on my side and appreciated my efforts, and theirs is the only opinion I really care about.  

              •  I have Ian's teachers (0+ / 0-)

                and the principal and the special services coordinator on our side.

                The problem is transportation is a separate department; it seems to believe that it answers to no one and can be quite rigid in it's interpretation of "district transportation policies".

                "Policy" is that if a special ed student is going to a specific program at a school, they get transportation.  Otherwise transportation deems it to be "choiced in" student (per Colorado law, you can send your child to any school, but transportation does not have to be provided for a "choiced" student).

                Thus the problem isn't with special ed, per se, but with transportation.  And transportation is full of dick heads.

                Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

                by Frankenoid on Wed Nov 22, 2006 at 11:03:37 AM PST

                [ Parent ]

                •  It all comes down to the IEP (0+ / 0-)

                  In my son's IEPs, we always get transportation written in the IEP as a required service.  
                  If they refuse to put it in the IEP, I don't sign.  

                  Once it's in there the school district has to figure out how to provide it -- by twisting arms in the transportation department if necessary.  

                  This tactic transfers the headache to the school district - now it's their problem to change the policy and talk to the transportation dickheads.  And the best part is, you never have to deal with anybody except the IEP team.

                  •  Oh it's in the IEP (0+ / 0-)

                    but I've learned... never trust anyone else to deal with a dick head.  Nine times out of ten they'll drop the ball if you don't continue to raise hell.

                    Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

                    by Frankenoid on Wed Nov 22, 2006 at 12:51:51 PM PST

                    [ Parent ]

  •  Frankenoid, thanks for posting this. (17+ / 0-)

    The middle school years are challenging for all kids, and they are that much more challenging for kids with autism. I would love to see more funding directed toward kids helping kids with disabilities navigate the middle and high school years. What can we do to help?

  •  Only money made the difference (14+ / 0-)

    for my nephew, who is middle-of-the-spectrum autistic.

    Great diary, Frankenoid!

    Thanks to his family's economic situation, they could send
    him to special programs, including the one at Northwestern
    (forgot its name) that trained him to live alone, though near
    his family, to work part-time (again--the family money
    can subsidise his salary), to function well in public, to find
    personal joy in his favorite activities.

    The program also gave him confidence, which has been
    priceless.

    I shall stay the way I am, because I do not give a damn. . . .Dorothy Parker

    by begone on Tue Nov 21, 2006 at 06:57:19 PM PST

  •  Recommended (5+ / 0-)

    It seems the least I can do. BTW: my memory of my son's middle school years - especially the first one - is that I wished I could have left the country and home schooled him abroad.

  •  great diary (12+ / 0-)

    I am faced with a similar situation, with a 11 year old son with Asperger's - and there seems to be very little understanding and research that is relevant to middle and high school.  Just thinking about college makes me cringe, I do not see how he could be able to handle that at all at this point.  

    I saw something in Newsweek or Time that arrived today about adult autism, but I didn't have time to read it. Has anyone else read it? I think one main difference with people with autism, high-functioning or not, is that they look normal - you can't see any physical disabilities, so you expect normal reactions.  But you don't get that, and it throws people off. It is harder for autistic persons to get sympathy and help because of this.

    We had to move to a different school district just to get my son on an IEP in school, and in fact from a 'liberal' town to a 'republican' to get him more help. Does any of you have a similar experience?  Seems like the new school district is more concerned about being sued by parents (and have more money) than the old one, so they fulfill more of the parents' wishes.

  •  Think it's rough now? (26+ / 0-)

    My daughter is 22. My daughter is high functioning also, and probably fits the Asperger's criteria.

    She went to a technical college for two years and got pretty good academic support.  Unfortunately, most college-level teachers never had to take a special ed class, and freak out at having someone with autism in their class.

    She qualifies for services with the state Department of Vocational Rehabilitation.  They haven't done a whole heck of a lot as far as vocational counseling. They pretty much ask her what she wants to do.  A job is an abstract thing for someone like her.

    Her schooling was paid for until she got to the University of Wisconsin, because the disability support person totally dropped the ball, passed the buck, refused to meet with us (her parents) and told us lies about lack of similar problems with other students with autism.  I don't know if the "support" person was stupid, or thought we were, because it wasn't too hard to contact my friend whose son was a student there, and confirm that the support person was lying. Due to lack of support, my daughter's grades were not high enough for continued funding for school.  She's still taking classes at her own expense (SSI $) because there is virtually nothing for her to do.  

    She found a job on her own cleaning 2 hours a week for a man who is blind and deaf.  He hired her to proofread and do other clerical work for his software company, and via e-mail told me he has always wanted to have a business that employs people with disabilities.  But that job is only 2 hours a week.

    Her DVR counselor is overworked, I think.  It's very hard to get her to follow up on things in a timely manner.

    Today my daughter called me at work to let me know she got a 41 on her geology test.  She's so frustrated--she tries so hard.  She got hooked up with a better academic support person and has another person working with her on study skills.  Still, it's a struggle.

    She's very bright in many ways, but very immature emotionally.  I don't want to see her sitting idle all day collecting Social Security because no one gives a damn about what happens to these kids when they grow up.  With the right support, she can be a taxpaying citizen, and she has every right to be.

    "But I do think one thing we can all agree on is that this country is overdue for a cheesehead president. We've never had one." --Russ Feingold

    by kkshedevil on Tue Nov 21, 2006 at 07:10:28 PM PST

    •  "Freaking out" (17+ / 0-)

      at the word "autism".

      Our worst example of that was with the damned special ed teacher at the first elementary school our son went to -- thank gawd for good mainstream teachers there.  The "mild/moderate special ed" teacher was young, inexperienced, and knew nothing at all about autism.  I was flabbergasted -- this was in 2001, not the mid 1980's.  One would expect that every special ed teacher had at least some exposure to autism.

      Our best example was at the day camp where we've sent our boys for years.  When Ian was school age and ready to transfer, they were somewhat freaked at the "autism" word.  I just explained what it was to look out for, and after two days the director told me that the nice thing about Ian was that they knew what to expect.  Other kids had problems and caused trouble, but the parents hadn't given them any clues to what was going on and what was effective.

      We are cautious in our expectations for our son; we are hopeful that he can find an area of interest that can also be a vocation.  But we also realize that it will take our assistance to help him navigate the pitfalls.

      Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

      by Frankenoid on Tue Nov 21, 2006 at 07:20:06 PM PST

      [ Parent ]

      •  2001. Sigh. (4+ / 0-)
        Recommended by:
        Xan, Frankenoid, Unduna, yinn

        In many states, there are teacher certifications for Learning Disabilities, Cognitive Disabilities and Emotional Disabilities, but autism is just lumped in with whatever.

        "But I do think one thing we can all agree on is that this country is overdue for a cheesehead president. We've never had one." --Russ Feingold

        by kkshedevil on Tue Nov 21, 2006 at 07:42:03 PM PST

        [ Parent ]

      •  Re: Vocation (2+ / 0-)
        Recommended by:
        Frankenoid, Fabian

        Have you considered gardening?

        :-)

        A vote for Obama is a vote for Lieberman is a vote for Bush

        by The Officious Intermeddler on Tue Nov 21, 2006 at 08:01:46 PM PST

        [ Parent ]

      •  We had this problem (8+ / 0-)

        in 2004.  2nd grade, the year from hell.  Brand new special ed teacher, no idea about autism and 7 kids in the grade with it.  Very focused on behavior plans--yeah like that works when a child is overstimulated.  

        And the classroom teacher was also brand new, it was her first classroom.  The scary thing was she had her Master's in Special Ed and she was freaking clueless.  While volunteering I mentioned to her that one of the other kids might need testing for dyslexia since he was flipping his letters and inverting numbers.  Her reply was that he had auditory processing issues.  That may have been but I was proctoring a written exam.  After nearly 5 years of excellent services we really saw the difference experience and knowledge makes.  Our son ended up with a significant depression that year, so significant that he would take his workbooks to his old 1st grade classroom and do his academics there "because it's peaceful and I feel safe."

        "For all those whose cares have been our concern, the work goes on, the cause endures, and the dream shall never die." Ted Kennedy

        by sobermom on Tue Nov 21, 2006 at 08:16:38 PM PST

        [ Parent ]

      •  this is exactly why (6+ / 0-)

        I am dragging my feet on an evalutaion...right now we are getting great services, our daugther is in regular kindergarten with a full time aid and her teacher suspects she's ADHD.  I haven't argued, I'd rather she think that than bring in the BIG "A" WORD until we know more.  Legally I don't think we need anything official as far as diagnosis until 2nd grade but I doubt I'll be able to put if off that long so I'm looking for Drs. now.

        Great diary, I know it won't be easy but knowing what's around the next corner makes all the difference in the world!

        "I hate people when they're not polite"

        by kittania on Tue Nov 21, 2006 at 09:58:36 PM PST

        [ Parent ]

        •  Get. The. Eval ! (2+ / 0-)
          Recommended by:
          snakelass, Frankenoid

          Evaluations are your friend.  They are not your enemy.  It's pretty scary to have a label or labels pinned on your child but if it gets them the help they need, it is a good thing.

          I asked my son's teacher about official ADD/ADHD diagnoses.  Her answer(YMMV) was that they didn't start looking for it until kindergarten and only then if a student's behavior disrupts class or interferes with their academics.

          My boys have been described as 'stimulation seeking' which means that they crave stimulation.  This doesn't sound too bad until you need them to sit still and pay attention in a classroom setting.  Kindergarten is next year.  We'll see.

          We must never lose it, or sell it, or give it away. We must never let them take it from us.

          by Fabian on Wed Nov 22, 2006 at 01:59:02 AM PST

          [ Parent ]

      •  Yes! Yes! It is so incredible (1+ / 0-)
        Recommended by:
        Frankenoid

        that someone can be certified in special ed and know practically nothing about autism. Although here in Illinois it has gotten somewhat better, because the state has been transitioning from institutional programs to community resources & they noticed early on that people with autism were the first ones institutionalized & the last ones ever matched with community programs.

        All my peeves are my pets.

        by yinn on Wed Nov 22, 2006 at 08:01:46 AM PST

        [ Parent ]

    •  Colleges (2+ / 0-)
      Recommended by:
      Xan, Frankenoid

      are only just starting to deal with these issues, I can only talk from experience, but I did have one of my Asperger's students ( verbal IQ of 147 !)sign up in her senior year for a class at the local county college. Well she wound up with the head of the psychology dept ( a nice old lady by all accounts and an original staff member of the college ) in the intro to psych class and barely managed a D. Neither one was prepared, but at least she got a taste of college work

      •  Sounds like me (6+ / 0-)

        I have AS, finally was diagnosed this year at 24.  I've been a member of Mensa for two years now having qualified for JrM years ago.

        I've been fairly successful in college with most subjects but it's really hit-or-miss and a professor who doesn't speak in a way I understand can be crippling.  I've failed more than one class and passed the same classes later with near 100% just based on how the professor instructs.

        Tell her to keep on top of add/drop dates.  If the timing of a class isn't essential, sometimes it is better to drop it and try again with a different professor the next semester.

      •  That's what we are starting to look into (1+ / 0-)
        Recommended by:
        Frankenoid

        Our son is ADD and we're worried about him losing the support he has in High School.  His organizational skills are world's better than they used to be, but don't know if he's ready to juggle classes without a little help.

        BTW he wasn't diagnosed till 7th grade.  Partly because he's bright enough to compensate, and partly because we never heard of ADD without the hyperactivity.

        "Davis-Bacon prevailing wage, I'm not sure what that is" Sen. Jeff Sessions

        by Hens Teeth on Wed Nov 22, 2006 at 07:58:24 AM PST

        [ Parent ]

        •  Its commonly misdiagnosed (0+ / 0-)

          I had a kid who actually went from a 75 IQ to 91, simply by taking the test after he was diagnosed and put on a stimulant. I knew something was up because he had passed the NJ high school proficiency test, which is not easy and lots of non-classified kids fail it. He had been diagnosed very late with a learning disability, but no one picked up on the ADD of "inattentive" type. Your son will not a lot of support, but mostly will need to understand he has to study in a different way than non-disabled students. Good luck.

    •  Absolutely - early 20's hardest for my bro (4+ / 0-)
      Recommended by:
      Xan, Frankenoid, forrest, Hens Teeth

      My brother (now nearly 40) and our whole family had the very hardest time of it when he was in his early twenties, struggling to adapt to young adulthood and the sudden dropoff of  state educational & vocational programs that were a given up to age 21 (an rather arbitrary age for a developmentally disabled person). That was the period of time when he and our family were navigating difficult, difficult waters (not that his younger years were a cakewalk either). My bro is high-functioning/Asperger's similar to the Rainman character in a lot of ways. Getting any supportive programs or people required enormous amounts of advocacy and multi-year waiting lists. (I claim no credit; I was just a young college student -- it's my parents who were unstinting advocates.) As you experienced, there are some good vocational/social work people, some that are hideous, and many that are simply overworked. The job they do is important and complex and yet utterly thankless and underfunded. The path of progress and placement and such is a very winding one indeed.

      For the individual as a young adult, adjusting to so many life changes socially, vocationally, and having similar sorts of identity-formation, social questing, romantic/sexual urges, and stuff that typical young adults go through, plus having this substantial disability in dealing with all of it -- it's a huge challenge for everyone involved. Many psychiatric conditions also emerge in early adulthood, and many developmentally disabled people become doubly-diagnosed at this stage of life. Autistics can also be obsessive, anxious, depressed, etc. My brother went through an angry, awful, rebellious shoving phase, cracked a couple of my dad's ribs during the scariest bit of it. He is not a violent person but part of autism is an inability to cope with what can feel like an overwhelming overstimulating onslaught of emotions that you can't sort or contextualize with any of the sort of skill and perspective that we normals do all the time.

      Things got better and worse but ultimately stabilized satisfactorily after a few really turbulent years. I just wanted to share that experience and empathize with you! A sibling's perspective is different, and a parent's is the much more challenging role, but the early 20's are indeed underrecognized as the very difficult times that they can be. Hugs of support and understanding to you.

      Reality - Humanity - Sustainability

      by Em on Tue Nov 21, 2006 at 10:13:55 PM PST

      [ Parent ]

      •  Temple Grandin speaks (1+ / 0-)
        Recommended by:
        Xan

        about how important anti-depressant medications were to her in early adulthood; the smoothed out her emotional yo-yoing and, IIRC, diminished some of her sensory overload issues.

        During the last evaluation, I was asked a lot of questions related to depression (which we're on the lookout for -- bi-polar disorder and depression runs in both families, as well as autism), and OCD.  So far there aren't signs of either, but we'll probably go through another evaluation or two before Ian gets to college age.

        And the anxiety disorder diagnosis we got this time may seem like a bad thing, but it really isn't.  I was told "it is very typical for an autistic of Ian's age.  If treated now, it should be gone by the time he's 20.  If not, it will be a huge problem by the time he's 20".

        Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

        by Frankenoid on Wed Nov 22, 2006 at 04:47:19 AM PST

        [ Parent ]

  •  My 15 year old daughter (21+ / 0-)

    has mental retardation and autism spectrum disorder. She will always need some sort of assistance -- a group home and supported employment, for instance. We are currently beginning to navigate the maze of services she will need once she ages out of the school system.

    I teach middle school students with emotional disabilities. One of my kids was recently re-evaluated and coded for autism. He has been doing well with us -- he is mainstreamed for all of his classes, but I have to constantly make sure he is getting the social help he needs. I eat lunch with him once a week and he is allowed to bring a friend. I usually bake cookies or a cake and we play games like Trouble or Sorry. I think it helps, but he will need more when he enters high school.

    Best of luck Frankie, and thanks for the great diary.

  •  Did you catch (6+ / 0-)

    this story on All Things Considered? It's part of the This I Believe series - brought tears to my eyes when I first heard it.

    We're All Different in Our Own Ways

    Best wishes to you and your son.

    That a man can stand up. - Johnny Tremain

    by lirtydies on Tue Nov 21, 2006 at 07:25:33 PM PST

  •  Surprising definition of "high performing" (5+ / 0-)

         I was surprised to learn that "high performing" means a measurable IQ in excess of 70.
  •  I think a lot of people (12+ / 0-)

    are in a fantasy world with this early intervention stuff.  They think that enough intervention before age seven and the child will no longer have special needs.  Early intervention is not a panacea.

    There is more to truth than increasing its spin

    by hearthmoon on Tue Nov 21, 2006 at 07:32:24 PM PST

    •  Yup. Early intervention is (4+ / 0-)
      Recommended by:
      Sally in SF, cookiebear, snakelass, wa ma

      just the foundation; you have to keep building on it.

      Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

      by Frankenoid on Tue Nov 21, 2006 at 07:33:44 PM PST

      [ Parent ]

    •  It may be about money. (3+ / 0-)
      Recommended by:
      Xan, snakelass, Frankenoid

      Early intervention is, hands down, the best investment of resources for any developmental delay.  

      Talking about money, my family came to Columbus for The Game.  Mom and I took the boys shoe shopping right next to a Buckeye paraphenalia store(kind of like drug paraphenalia, only legal).  She was marveling at all the money, effort and enthusiasm put into this one college sports team.  "If only we could harness this energy for Good...." she mused.

      Yeah.  That's when I told her how upset parents in my school district got when staffing for the HS weight room got cut.  They cut special ed assistants at the same time, but no one threw a holy fit over that!

      We must never lose it, or sell it, or give it away. We must never let them take it from us.

      by Fabian on Wed Nov 22, 2006 at 02:06:10 AM PST

      [ Parent ]

  •  Parents tell me (6+ / 0-)

    get your kid diagnosed in NY, but educated in NJ...we do a damn good job with these kids and it's because we pay for it with the highest property taxes in the nation. I think we have the best special education anywhere.Only down side is there are too many snake oil salesmen pitching miracle cures to parents. We see that with autism because so much is unknown, but we rarely, or never, see it with Down Syndrome or CP or any number of disorders, because more is known about these conditions.  A Feingold diet isn't going to make a Down Syndrome kid perform normally, period. I've watched parents really struggle and as a parent with two "normal" ( well not entirely normal ...) kids my wife and I struggle over whether or not to have another because of our ages. I just see too much of this in my work. But I see plenty of young couples too, some have more than one disabled child. The Asperger's kids, some may have real high IQ's, but man their social functioning makes things really difficult for them. And there are long waiting lists for schools that cater to these kids. I'd like to see more in-district programs, but many of the parents don't trust us to do a thorough enough job.

    •  Finally found this again! (2+ / 0-)
      Recommended by:
      javelina, jerseydan

      My in-laws, who's daughter is severely autistic, had a hell of a time when the moved to Pueblo, Colorado from New Jersey.  Fought tooth and nail to get even minimal services for their daughter.

      Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

      by Frankenoid on Tue Nov 21, 2006 at 09:34:04 PM PST

      [ Parent ]

  •  Thanks for writing this! (7+ / 0-)

    It's so shortsighted to spend money on the early years and then just stop! They need to see that it's an investment, and the rest of school is important too.

    I really feel for you dealing with this. Sounds like you are a great Dad and he sounds like a lovely kid.

    We will never eliminate poverty in America unless we do it comprehensively and nationally....no more incrementalism. - John Edwards

    by Gorette on Tue Nov 21, 2006 at 07:36:28 PM PST

  •  Thanks for letting me rant (16+ / 0-)

    I think I should add that my daughter has had some tremendous professionals helping her along the way.  There were definite stinkers in middle school, but her early childhood, elementary and high school special ed teachers were wonderful.

    My daughter has perfect pitch, and we were blessed to find a piano teacher who is also a music therapist.  Not only did they establish a great teacher/student relationship, they remain friends even though my daughter stopped taking lessons last spring.

    She is a wonderful human being. For those of you who don't have someone with autism in your life but are kind enough to educate yourselves by reading this diary, my daughter has incredible empathy for other people.  This fact might not be expected among people who have not delved deeply into the subject.  

    She belongs to a social group for teenagers/young adults with autism.  This group was founded by a dear friend, and has been going gangbusters for years now.  At a dance a few years back, a young man proposed.  Turned out he had asked several girls to marry him that evening!  She has gotten valentines from group members also.

    Frequently, members of this group participate in panel discussions about what their lives are like.  The parents of younger kids are incredibly grateful for the snapshots of their childs' futures.  

    Her sense of humor is great.  A lot of people on the spectrum don't get plays on words.  But she went grocery shopping with her dad last Friday and returned with some small citrus fruits.  She asked me, "Mom, did you see those darling clementines I picked out?"

    "But I do think one thing we can all agree on is that this country is overdue for a cheesehead president. We've never had one." --Russ Feingold

    by kkshedevil on Tue Nov 21, 2006 at 07:37:07 PM PST

    •  we have a 5 year old (3+ / 0-)
      Recommended by:
      Xan, Frankenoid, land of the free

      that we suspect may have perfect pitch...she has no offical diagnosis yet but we suspect also she is "on the spectrum"

      we'd love to get her involved in some type of formal musical education but we don't want to start too soon and we want to find the right teacher.  Do you have any advice?

      "I hate people when they're not polite"

      by kittania on Tue Nov 21, 2006 at 07:57:57 PM PST

      [ Parent ]

      •  How long have you suspected? Re: Spectrum (1+ / 0-)
        Recommended by:
        Frankenoid

        asdf

        A vote for Obama is a vote for Lieberman is a vote for Bush

        by The Officious Intermeddler on Tue Nov 21, 2006 at 08:08:56 PM PST

        [ Parent ]

        •  since she went to preschool at 3 1/2 (2+ / 0-)
          Recommended by:
          Xan, Frankenoid

          they suggested an evaluation which we had done privately before we went thru the public school system...we still don't have an official diagnosis and I am dragging my feet on getting one because right now she's getting good services in an inclusive program (she's in a regular kindergarten classroom with a full time aid)

          "I hate people when they're not polite"

          by kittania on Tue Nov 21, 2006 at 09:49:41 PM PST

          [ Parent ]

      •  suggestion (3+ / 0-)
        Recommended by:
        snakelass, Fabian, kittania

        five years old is not too early for musical education.

        You might want to check out the American Music Therapy Association at http://www.musictherapy.org/

        I remember a time when the American President was the leader of the free world. ****** Repeat after me: "Neoconservatism has failed America."

        by land of the free on Tue Nov 21, 2006 at 09:17:33 PM PST

        [ Parent ]

        •  P.S. info on music therapy and autism (5+ / 0-)

          Here's an interesting paper about how music therapy can help many patients on the autism spectrum.

          Music Therapy and Patients on the Autism Spectrum

          I remember a time when the American President was the leader of the free world. ****** Repeat after me: "Neoconservatism has failed America."

          by land of the free on Tue Nov 21, 2006 at 09:22:32 PM PST

          [ Parent ]

        •  Ha! (4+ / 0-)

          They sing instructions to my three year old in special  ed.  I do a cheerleader chant complete with clapping and stomping for my kids too.  My five year old sings along to the 'Incredibles' soundtrack(great music!).

          Music is a great way to get their attention.  

          We must never lose it, or sell it, or give it away. We must never let them take it from us.

          by Fabian on Wed Nov 22, 2006 at 02:11:53 AM PST

          [ Parent ]

          •  a certified music therapist is a valuable tool (3+ / 0-)
            Recommended by:
            Xan, Frankenoid, Fabian

            not only are they trained in music (singing, playing guitar, piano), but their college degrees require extensive study in psychology, education (including special education,) and medicine. The training is similar to an occupational or physical therapist - a minimum of a bachelors degree plus professional certification. Many music therapists in a clinical setting (particularly those who work with autistic patients) have a masters at minimum, often a PhD. They use music as a tool to reach people, get their attention, and help them focus on specific tasks. For the autistic person, music therapy can be one of the more effective therapy methods available, as those diagnosed on the autistic spectrum are often musically gifted and have a natural ability to focus through music. The autistic person is often calmed and happy to participate in music, and because they are good at it, they enjoy taking on tasks that incorporate music. It's frankly amazing how much formal music therapy can help the severely autistic person communicate and function.

            I should note that I'm not a music therapist. I studied it for the first couple years of college (my goal was actually to become a clinical music therapist for autistic patients), but I changed course to pursue a different field.

            I remember a time when the American President was the leader of the free world. ****** Repeat after me: "Neoconservatism has failed America."

            by land of the free on Wed Nov 22, 2006 at 06:33:20 AM PST

            [ Parent ]

    •  I have never played favorites (0+ / 0-)

      but I secretly have had them! For me, the best part of working in the adult DD services field has been working with people who have autism & I often miss it now that I'm on the consulting/training end of things.

      All my peeves are my pets.

      by yinn on Wed Nov 22, 2006 at 08:11:31 AM PST

      [ Parent ]

  •  Thanks. You know what really sucks? (10+ / 0-)

    And I mean this as the grateful parent of a perfectly normal, albeit advanced child: what really sucks is that there's lots of parents whose kids who are in far worse shape than yours, and they hardly understand enough of what's going on with their kid to have the insight and patience and advocacy for their child that you do.

    Thanks.

    I'll be sure to hug my attention grabbing boy...

    "It's better to realize you're a swan than to live life as a disgruntled duck."

    by Mumon on Tue Nov 21, 2006 at 07:37:44 PM PST

    •  My neighbor's child in my neon red town (3+ / 0-)
      Recommended by:
      Mumon, javelina, Frankenoid

      has a little boy who just went into kindergarten this fall. Eric is a genius and these children have much the worse time around here. Far worse than mentally retarded children. His language skills are so advanced. His perception of what is going on around him and the way he expresses it is so unique. I have tried to talk with his parents because now that he is in school he is starting to get very neurotic.

      When he tells a cat story he becomes the cat. Same as a dog story. He is just wonderful. I gave his mom The Little Prince  to read to him. That's who he reminds me of.

      And oh what I could tell you about former students of mine! I look them up on the internet and I am thrilled!

  •  We should talk (6+ / 0-)

    after elementary school, where our son did very well, we opted to place him in private school. 1) he was getting only 3 hours of "support" per week and 2) 1 hour of that was adaptive PE. He's now in a competitive private school (single sex) and, as he says, has found his place. The teachers and students have accepted him and he "fits" in. Academically, he's doing well. My concern, like yours, is what next. Part of my job as a parent is constantly searching for classes and opportunities to bring him out and help him find his passion and hopefully direct it into a vocation where he can suppot himself. You're right of course that there are a flood of children with HFA, AS, PDD-NOS who will be in need of even more services as they enter middle and high school, where the social environment is very challenging. Our prayers are with you.

    •  Right now we're working (5+ / 0-)

      on getting Ian into an anxiety study group -- the "study" part means that it's part of a JFK study on helping verbal autistics find strategies for dealing with anxiety, become more flexible and aware of the social surroundings.  It will last for 12 weeks, after a slot comes open.

      After that is finding a social group for him (I will not have him doing more than one thing at a time).

      And we want to get him involved in vocal music.  He has a lovely singing voice, will help him with his articulation, and give him social outlet with "neural typicals".

      Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

      by Frankenoid on Tue Nov 21, 2006 at 09:09:08 PM PST

      [ Parent ]

      •  it will be interesting to find out (0+ / 0-)

        if the anxiety is connected to the ASD, or is merely co-morbid.  I recently heard Dr. Margaret Baumann, a neurologist who specializes in autism, talking about how people on the spectrum often receive lousy medical care because everyone assumes any symptom they have is a result of ASD.  One 24 year old girl with autism was found (on autopsy) to have died of an undiagnosed ulcer.  People assumed all her G.I. complaints were "just autism," and she wasn't properly treated for a pretty simple condition.

  •  just another thought (6+ / 0-)

    transition planning is supposed to be part of the IEP right? we have transition planning built into most programs in NJ, don't know about anywhere else, we also have a state division of vocational rehabilitation and the specialist comes out senior year, or at age 21 if need be, and they do an assessment. More severely handicapped kids go into the develomental disabilities division, which is largely privatized now, though McGreevey saved the last three state institutions from closure. They are good programs; not perfect but good, and my older sister has been a resident at one since 1970. yes, that's 36 years.

    •  Transitional planning (0+ / 0-)

      is part of the IEP -- but when there's nothing to transition to?

      Denver does have a pretty good program for less functional autistics; it's just that those programs aren't appropriate for a kid like mine.

      Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

      by Frankenoid on Tue Nov 21, 2006 at 08:38:47 PM PST

      [ Parent ]

    •  My experience with transition planning (0+ / 0-)

      ...It pretty much sucks. Part of it is, the child may be needing & getting one-to-one attention in the school system but then the family finds out that this intensive kind of staffing usually doesn't exist for the adult person with DD. Then what?

      Starting early, getting on waiting lists, involving your chosen agency at least a couple years before graduation are some things parents can do if the school is not on the ball.

      All my peeves are my pets.

      by yinn on Wed Nov 22, 2006 at 08:19:27 AM PST

      [ Parent ]

  •  newsweek ? had a story about aging kids out (3+ / 0-)
    Recommended by:
    sobermom, snakelass, Frankenoid
    and something about a repub who was trying to stop funding for adults with autism, i found it yesterday via a link on cnn or msnbc, but i;m soo tried, it don't think i can find the story, there were two groups of people fighting for funding,  an ugly political story, i'll look, but i just got my ppd-nos 6 year old to sleep (after peeling him off he ceiling caz the holidays are throwing him off) and i'm about fall asleep myself,
    •  I work with (2+ / 0-)
      Recommended by:
      Xan, Frankenoid

      a number of these kids.Keep the faith, i've seen many make good academic progress. We used to pay a brilliant local doctor to assess these kids, but he retired and now we can only use our local psychiatrist, who is good at assessing depression but autistic spectrum just ain't his thing...for awhile we were paying Yale 5 k but witt the budget we are not paying them anymore. Yale wants the money up front and won't take insurance....it wouldn't hurt for them to be a little more open to people with needs too...and they have waiting lists of years as well.

      •  We're lucky (0+ / 0-)

        our insurance coverage (Kaiser) provides the autism screening, and we had no problems at all getting the referral.

        As part of that we also get 5 appointments with the autism specialists per year -- which I actually have never used.  This year, though, Ian's teachers and ht school psychologist have asked if someone from JFK could meet with them to help them strategize for Ian's ongoing needs, so I need to arrange that after Thanksgiving.

        There are many reasons we want to keep him at that school!

        Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

        by Frankenoid on Tue Nov 21, 2006 at 09:12:26 PM PST

        [ Parent ]

    •  Have you tried a calendar? (4+ / 0-)
      Recommended by:
      Xan, hoolia, snakelass, SassyFrass

      One thing that has helped Ian immensely is having a calendar always availble.  We learned this when had a melt down in kindergarten or first grade about seeing the first Harry Potter movie (he thought opening night was the only night you could see the movie, and if we weren't going to the movie that night....)

      I took him home, showed him the day on the calendar we would see it, and, since he had a concrete "map of time", and could look at how many days between now and then, he was fine.

      He handles the anticipation of Christmas, birthdays and the like much better than his older brother, as long as he has his calendar!

      Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

      by Frankenoid on Tue Nov 21, 2006 at 08:17:08 PM PST

      [ Parent ]

  •  A lot of kossacks in the field (4+ / 0-)
    Recommended by:
    Xan, Frankenoid, Fabian, ormondotvos

    I don't know much about this myself, but I see a lot of us work or live with special needs kids. At Yearlykos I actually met two Denver public school teachers who work in special ed. They were lurkers so you may or may not see them posting about this. I'm wondering if you've had a chance to work with any other locals in Denver. I don't have their names or emails. Sorry I'm not much help.

  •  My son is developmentally disabled (6+ / 0-)

    and still is at the age of 36.  Like your son, he's very high functioning, holds down a job, is quite independent, and until you get to know him you'd have no idea he has limitations.  He will never be able to handle his own money, for instance.

    But we were lucky.  He got through the education system here in CA before education starting going down the tubes and before all the services for children like yours and mine dried up, too.  And it's gotten much much worse in the last 6 years with BushCo in office.  When my son was going though school, he was in special ed, in private schools paid for by the state, and received the best of care and help.  You won't find them out there today and it's really, really sad, particularly with autism and other special problems on the rise.

    My older sister's grandson is not developmentally disabled, but he needs special attention and assistance.  My sister and her daughter had to fight the SFUSD big time and threaten to sue (my niece hired a successful attorney that's won every case she's brought against the school district) before they finally agreed to give him a teacher's aid and other things that keep him on track at school.  He also has mild case of Turet's Syndrome and can you imagine, they wanted to label him HDDD and medicate him instead of providing the services that would solve the problems?  My sister and daughter absolutely refused and they fought for more than a year before the school district did the right thing.  

    It's shameful what our children and their parents must be put through to get the help and assistance they need to be productive, happy citizens in this wealthy nation of ours.  It's dispicable that many parents will never, ever get find the help their children need because they don't have the resources to fight, they don't know the laws that help them, and they don't even know where to start to fight the bureaucratic red tape.  Bless our children.

    •  the reason school districts fight is (13+ / 0-)

      because they are strapped; the feds are not funding special education at the rate they promised. As i mentioned in a previous post, Yale was soaking us for $5000.00 a pop. They don't take insurance, and a lot of insurance plans don't cover them anyway. So parents come to the school to ask us to pay for 1. additional wheelchairs and walkers, since the bus companies often don't allow them on the bus ( they are considered hazardous 2. a special bus because the bus ride is too long since the driver has to pick kids up all over town. the kids leave early and get back late.3. all kinds of related services like speech at home on weekends, after school programs, out of state programs, and so forth. Meanwhile the gym is crumbling, the buses are falling apart and transportation costs alone are skyrocketing, the residents want a tax cut and we can't get special ed teachers or speech therapists because we don't pay enough. it's a lot more complicated than most parents realize

      •  The Federal Government (9+ / 0-)

        The Individuals with Disabilities Education Act of 1975 promised 40% of funding for special education would come from the federal government.  That has never happened and the states have had to make up *$300 billion* in funding since 1975.  H.R. 3145, introduced by Charlie Bass and Rob Simmons (both ousted in the last election), would institute mandatory increases in funding until the 40% is in 2011.  I really hope that the Dems will pick up this bill and run with it in the 110th Congress if it doesn't pass this time.  The bill is supported by Senator Tom Harkin, who introduced something similar in the Senate, and by the NEA.

        "For all those whose cares have been our concern, the work goes on, the cause endures, and the dream shall never die." Ted Kennedy

        by sobermom on Tue Nov 21, 2006 at 09:03:01 PM PST

        [ Parent ]

        •  Special ed also is (5+ / 0-)
          Recommended by:
          Xan, sobermom, snakelass, jerseydan, wa ma

          a handy whipping boy for school districts not fulfilling their jobs, too.

          When funds are tight and some program or another is getting cut, the excuse is "but we have to spend it on special education" (although I would point out that there always seems to be enough $$$$ to hire another mid-level administrator or two; Denver added 4 -- count 'em 4! -- "assistant superintendents a few years back).

          And, I think, that tendency to "blame special ed" for money shortages leads to less political willingness to fund programs for special needs kids which, in the long run, would benefit all students.  Many high-functioning autistics would thrive in smaller, more self-contained schools with small class rooms, a mentor program to help develop interests, and a mixed mainstream/special needs student body.  And the mainstream students would reap the benefits too.

          Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

          by Frankenoid on Tue Nov 21, 2006 at 09:41:29 PM PST

          [ Parent ]

          •  it seems like you have so many good ideas (0+ / 0-)

            Is your school district receptive to having you consult with them on designing programs for your son and other middle- and high-schoolers?  We desperately need MODEL programs.  Other districts are much more willing to adopt something that has worked elsewhere.

          •  some additional thoughts (0+ / 0-)

            Yes, special ed is often a whipping boy. But, the fact is at least here in NJ we can't even get quality people to sign up to be supervisors and principals for special ed, it has become so frought with litigation and paperwork. We do a little more than is required by the feds here, but damn I have some IEp's running almost 200 pages! Now you know I don't have time to read through all that, I've got 75 kids to case manage. BUtmake mistake in that IEP, and you can get hammered. Bad review in your file, and a payout to a parent. I didn't get into this to push paper all day. i offered to write a grant for 2 special ed teachers to proofread the IEP's full time,and I was laughed out of the supervisor's office! See, we have separate case managers here in NJ, and this year they wanted to get rid of us, but the parents in NJ came to our defense; they like having a social worker to call up and discuss problems with. As for the four administrators, don't be surprised if they have friends on the Board, but having said that, 4 assitant supers is not that many in a major city like Denver. All of them would be paid much higher in the private sector for a similar level job, though with a lot less job security. And those jobs are more of a grind that people think; there is endless paperwork and someone has to do it; whether they need a six figure salary to do it is open to debate, but I have seen people walk off these jobs due to the stress. I've even seen folks return to the classroom! Still, this diary was on my mind at an IEP I did just this morning for a high functioning autistic kid at a county "public separate school" set up just for autism. We even talked about these very issues, so you're doing some good, keep at it.

        •  Here is a link to the NEA's action page (2+ / 0-)
          Recommended by:
          sobermom, Frankenoid
    •  Parents - involve your "typical" siblings (5+ / 0-)
      Recommended by:
      Lisa, Sally in SF, Xan, snakelass, Frankenoid

      As a sister of 3 disabled adult brothers (one high functioning autistic) I urge parents to involve your typical children to be involved at all stages of future planning.  My mother was widowed quite young with seven of eight children still at home and when she died eight years ago my husband and I took in my 3 brothers.  Mom had not/would not involve us in planning so had their finances set up incorrectly.  Two of the three have too much money but not enough so it's often hard to get the few services for adults that are available in Illinois.  There are alot of groups forming as well as conferences just for siblings of people with disabilities across the country as well as email groups (Sibnet on Yahoo for one).  Mom's death would have had a huge impact even if she had planned better and involved us more.  However, the impact her death had on our lives has been truely life changing, mostly not in good ways.  We made so many wrong decisions ourselves in crisis mode.

      •  There also are attorneys (2+ / 0-)
        Recommended by:
        Sally in SF, Xan

        who specialize in setting up financial trusts for the disabled.

        In my father's will there's a special clause concerning Ian -- if we die before my father (like, in an accident -- Dad's 86), my portion of Dad's estate would be split between my children; my niece the lawyer is appointed as a special trustee for Ian.

        Oh yeah, guess that's another reason to get a diagnosis for your kids: you can do things to protect them financially after you're gone if there is an official diagnosis of a disability.

        Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

        by Frankenoid on Wed Nov 22, 2006 at 04:55:45 AM PST

        [ Parent ]

      •  This is so true! (0+ / 0-)

        My siblings and I stay in constant touch about our children and should anything happen to me, my son and his special needs would be taken care of.  Vica versa with my sister's children.  And we share our experiences and knowledge so that others can benefit from it, too.  If I had not gone through what I did with my son, my older sister would not have had so much information on how to deal with her grandson's problems at school, although she certainly would have found out.  

        And having an attorney speaks volumes.  The school district would not have backed down on my sister's grandson if her daughter had not hired an attorney (and gone into debt to do it).  And that's the point - they discourage anyone from fighting for what's needed by setting up a zillion road blocks that many people are ill equipped to navigate around.  Had the school district not fought providing the services he needed, they would have saved money and my sister's grandson would not have had 2 terrible years in school that is now taking much more to fix than it would have if intervention had taken place when they first asked for it.  It's crazy!  Rather than working in he best interest of the children, they act in the best interest of the pocket book which usually winds up costing them more...insanity.

  •  When was he diagnosed? (2+ / 0-)
    Recommended by:
    RiaD, ormondotvos

    Were there 'signs' beforehand that gave you a hunch that something was different?

    A vote for Obama is a vote for Lieberman is a vote for Bush

    by The Officious Intermeddler on Tue Nov 21, 2006 at 07:53:34 PM PST

    •  Official diagnosis was at five (1+ / 0-)
      Recommended by:
      ormondotvos

      gave a longer explanation above as to why the delay: yes, there were earlier signs, but there were also other possible explanations for it.

      Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

      by Frankenoid on Tue Nov 21, 2006 at 08:21:33 PM PST

      [ Parent ]

  •  We don't even (3+ / 0-)
    Recommended by:
    Xan, sobermom, Frankenoid

    know enough about genetic/other causes of autism/Aspergers/Down's/etc.

    One of the ongoing debates (and one of the many reasons that at the age of 23 I hope I'm less than 10 years away from being a father of 2-3) is whether advanced age in either/both parents is a major cause of any of the above, or whether it's largely a byproduct without correlation (i.e. people with said disabilities are going to take longer to meet marital partners and raise children for obvious reasons.)

    Where was the media when Ann Coulter said soldiers "were the lowest IQ men in our society, those incapable of normal careers?"

    by BlueEngineerInOhio on Tue Nov 21, 2006 at 07:54:07 PM PST

    •  Down's is a known genetic trisomy(21). (5+ / 0-)

      So it should not be lumped in with autism et al.  The incidence of Down's and certain other trisomies is strongly linked to maternal age.  I had the triple screen for my second pregnancy for exactly those reasons.

      Fragile X syndrome is another known genetically caused mental retardation.  We are having our sons screened for that.  If it shows up positive, they will be advised not to have children.

      The causes for autism et al may not be so simple, but it seems unlikely to be related to parental age or the correlation would have been noticed already.

      We must never lose it, or sell it, or give it away. We must never let them take it from us.

      by Fabian on Wed Nov 22, 2006 at 02:23:01 AM PST

      [ Parent ]

      •  I hardly ever see young kids with Down (1+ / 0-)
        Recommended by:
        BlueEngineerInOhio

        anymore.  A lot of them are aborted.

        There are adults on the autistic spectrum who are afraid that campaigns like "Combat Autism" and "Cure Autism Now" will result in a similar genocide.  Like deaf people, many autistic people treasure their differences and don't want them "defeated" or weeded out of the gene pool.

        •  Autism is a far cry from Down's Syndrome. (1+ / 0-)
          Recommended by:
          BlueEngineerInOhio

          Genetic trisomies are so lethal that most fail to produce a viable fetus.  Down's in particular is associated with a whole host of developmental and functional problems.  25% of all Down's children have serious heart defects, many requiring open heart surgery in infancy.  They are also plagued with digestive problems.

          Autism is no picnic, but it's not likely to kill you if untreated.

          We must never lose it, or sell it, or give it away. We must never let them take it from us.

          by Fabian on Wed Nov 22, 2006 at 02:33:46 PM PST

          [ Parent ]

          •  that may be true, but rationality (1+ / 0-)
            Recommended by:
            BlueEngineerInOhio

            doesn't always drive these kinds of decisions.  Lots of female fetuses have been aborted in India and China, not because being female is fatal but because it's less desirable for many families.  There are some who feel the same way about autism.  
            (And digestive problems are not uncommon in people with autism.)

            •  The difference is also (0+ / 0-)

              that testing for genetic abnormalities is ex.pen.sive. and risky while an ultrasound to determine gender is cheap and accessible.  

              The triple screen is only done between 12 and 14 weeks gestation and only gives the odds of having a fetus carrying one of three trisomies.  It's a non invasive procedure requiring only a blood draw and a precision ultrasound.  (It costs a few hundred dollars.)

              A genetic screening is most reliably done by obtaining fetal cells via amniocentesis.  Amniocentesis is a risky procedure with a significant risk of miscarriage.  Then there is the culture and testing(genotyping) of the cells, which is expensive.   (My son's post natal fragile X screen and genotype was 1k.)

              Basically, the most severe genetic abnormalities are the easiest to detect with noninvasive procedures.  Others require some risk and considerable expense to detect, which means screening for them will be a fairly uncommon event.  Of course, if you really wanted to prescreen, you could create IVF blastocysts and only implant the 'desirable' ones.

              We must never lose it, or sell it, or give it away. We must never let them take it from us.

              by Fabian on Thu Nov 23, 2006 at 04:41:53 AM PST

              [ Parent ]

  •  My 9 yo (8+ / 0-)

    also has a diagnosis on the autism spectrum and I agree with much of what you've said.  We also had an excellent experience with integrated public preschool, kindergarden, and 1st grade.  Each of his teachers had been teaching for over 30 years and yet all were well grounded in the most recent information about the spectrum.

    My son also craves friendships and social interaction.  This has been more difficult for us for a variety of reasons.  He cannot tolerate team sports in a very sports obsessed community.  And most of his classmates are overscheduled with activities so aren't available for playdates during the week.  The summer is his best time because we live near the beach and he can move from group to group as the activities suit his interest.  We've done the social skills groups and that has markedly improved his social interactions but I'd be grateful for any suggestions you have on making actual friendships outside of school.

    Thank you for a far better explanation of the presentation than I have been able to deliver thus far.

    "For all those whose cares have been our concern, the work goes on, the cause endures, and the dream shall never die." Ted Kennedy

    by sobermom on Tue Nov 21, 2006 at 07:56:25 PM PST

    •  And you? When was your son diagnosed? (2+ / 0-)
      Recommended by:
      Frankenoid, wa ma

      He (and Frankenoid's son) are so lucky to have such great parents.

      A vote for Obama is a vote for Lieberman is a vote for Bush

      by The Officious Intermeddler on Tue Nov 21, 2006 at 08:10:12 PM PST

      [ Parent ]

      •  Well similar to Frankenoid's eldest (7+ / 0-)

        he had a late diagnosis--2nd grade.  He was born prematurely with congenital birth defects and his first 3 years of life were medically intensive.  He had been evaluated from the beginning in the preemie follow up clinic at Children's but he aged out of that.  It wasn't until 2004 that we found an appropriate neuropsychologist to evaluate him.  But prior to 2004 his teachers were all very experienced and well versed in the autism spectrum.  He was also on an IEP from age 3 so had been getting speech, OT, PT and special ed services.  We all knew he had delays and he was "quirky" but his needs were getting met so no one worried too much.  Then in 2nd grade he was saddled with 2 24 year old teachers without a clue.  It was a horrid year.

        I definitely feel that my education (MSW) has enabled me to advocate for my son in ways that I might not have been able to otherwise.  We are extremely lucky to have him, he nearly died in the NICU, and despite his challenges he is a very joyful child.  My dad, former prinicipal, was also a great help to me.  I was crying one day after another depressing eval wondering if Sean would ever be able to graduate and go to college because of NCLB.  My dad said, "whether he's an attorney or a car mechanic, what matters is that he's a good person who treats his family and his neighbors well.  That's more important than what college he attends."

        "For all those whose cares have been our concern, the work goes on, the cause endures, and the dream shall never die." Ted Kennedy

        by sobermom on Tue Nov 21, 2006 at 08:53:32 PM PST

        [ Parent ]

    •  my son couldn't tolerate team sports (0+ / 0-)

      either.  He was a homebody, and reluctant to go new places (museums, plays, monster truck shows -- anything new) and finally found his passion quite recently -- acting.  

      He was able to make friends at school, and although Saturdays were a little dull for him as all his friends played sports, he never lacked for Sunday playdates.

  •  So many remarkable parents with remarkable kids (2+ / 0-)
    Recommended by:
    Frankenoid, wa ma

    A Happy Little Ball of Hate

    by mwchicago04 on Tue Nov 21, 2006 at 08:06:52 PM PST

  •  fyi - link to newsweek story (5+ / 0-)
    here a link to the newsweek story this week about funding and older kids, totally sickening what the repub's won't do, pork this and pork that, but when it comes to helping the poor, disabled, and middle class there no where to be found, ok off the soap box and on to the link, linked text
  •  a word of caution about some lawyers (5+ / 0-)
    Recommended by:
    Xan, snakelass, Frankenoid, Fabian, wa ma

    There are a few who know their stuff and get parents all kinds of concessions from the school district, but they don't work for free. A friend shelled out 15 k for a lawyer and when the school district gavein to her demands, she was out 15 k and could not recover, she said, because it had gone to arbitration and the district agreed to her demands ( which were to keep her pdd-nos daughter mainstreamed. So far, it hasn't hurt the kid...)Also know that hose of us in special services would give away the store if we could, but we are not allowed to. It's very stressful, we are told we can't mention money in our decisions, but in the background they ( the administration )are secretly twisting our arms and subverting our legal roles...

    •  I work for a litigator (0+ / 0-)

      so, should the need arise, am well-connected with that type of services.

      Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

      by Frankenoid on Tue Nov 21, 2006 at 08:22:58 PM PST

      [ Parent ]

    •  interesting.... (0+ / 0-)

      I have not been pressured by the district I work for, even though we're chronically broke.  I feel free to make recommendations based on my professional opinion.  It's my credential / license on the line if I end up in court and so I always make decisions and recommendations that I could defend.  Plus, I'm in this field to help kids.  That's what I try to do everyday.  I'm not out to deprive people of necessary services, I'm trying to help them feel better.

      Money comes into play for me most when parents threaten to litigate.  Then, I am often pressured to "give in" to parent demands for services I don't think are beneficial to the child in order to avoid costly court battles.  Those are discouraging for me.  There is one child whose house I pass everyday who is upstairs in his room -- with a gate on the door -- in a 40-hour a week ABA program.  He's not autistic, but his parents have not been able to accept that he's not as bright as they are and have glommed onto autism as a good explanation for why he is the way he is (sweet, interested in trains, and a little dim).  My heart breaks a little every time I drive by.  I long to see him in the backyard on the swing or running through the fall leaves, but I know he is upstairs in his room, compliantly saying "red," "duck," and "blowing" on command from his adult "skills trainer."  So far we've spent $30K on the lawyer alone, and he's not yet 4.

      I don't think "moms from hell" realize that people like me are making decisions in the best interests of their children, to the best of our abilities, irrespective of costs.  It sounds like things are different in your district, so I can understand why parents might have trouble trusting me.  It really is a shame.

  •  Our youngest was diagnosed with SID, Sensory (6+ / 0-)

    Integrative Dysfunction.  A very mild form of Autism, Aspergers Lite, as it were.  He as thrived though, with a combination of Occupational Therapy (OT) and Physical Therapy (PT) offered in our school as well as intensive home followup.  

    Just wnodering, what do autistic children w/in all the neurological disorder spectrums do when they live in 3rd world countries where there are no services available?

    Man who live in glass house wear pajama!

    by sylvien on Tue Nov 21, 2006 at 08:13:39 PM PST

  •  Common Myths & Other Stuff (14+ / 0-)

    An interesting article about AS in kids & adults ran in Wired a while ago, The Geek Syndrome.

    Some common myths and confusions about AS people:

    • Yes, they have emotions.
    • No, they really don't understand everybody else's emotional cues and body language, and it isn't because they decide coldly in advance to tune it out.
    • Success in a particular area of life won't translate evenly to other areas. It isn't strange at all that the AS person you know is a brilliant programmer/writer/trivia buff/gardener/artist, whatever, but can't ever get a handle on the basic paperwork generated by just being alive or never figures out office politics. Uneven skillsets are exactly what you should expect.
    • Your AS partner didn't mean to be insensitive, but don't even think about holding your breath until they figure out why you're ticked. Explain yourself, they'll appreciate it. Trust me.
    • AS people take criticism better than most people, that is, if you're actually trying to offer constructive advice about how to do something better. By the time an AS person is an adult, they're likely to be painfully aware of how bad they are at socializing and will appreciate help, will probably also learn quickly given the correct prompting.
    • AS people can't dance. OK, not really true, but they have a hard time learning. It's hard to watch someone do something and then mirror it. The way to go is to either be facing the same direction they are when you show them how to do a new thing or to physically guide them through the motions from behind.
    • Health and nutrition are critical. The excellent book, "Nobody, Nowhere" goes into the author's good results with high doses of B vitamins and magnesium (and other stuff, it's been a while), nutrients that AS people may need in more abundance. Insomnia or other sleeping disorders, food sensitivities (commonly wheat, dairy, bananas & a raft of lesser known characters), allergies or asthma, hypoglycemia or any number of health problems can worsen the picture. When AS people aren't taking care of themselves in the way they need, their social functioning and tolerance of stimuli can take a direct hit. This may account for some of the reported "uneveness" of social function from day to day.
    • Literal as the day is long. This is endless fun for grade school bullies, doesn't go away entirely in adulthood. Can lead to great dry humor, is not the result of deliberate obtuseness.
    •  This is great, thanks. I am an HF AS who actually (6+ / 0-)

      ... made it through a bachelor's degree in math at Yale, before it became clear that without an all-enclosing institution to provide structure, in daily life I was lost.

      I had to figure everything out myself, as even experts knew little about autistic spectrum disorders in those days. And: my parents were a product of colonial, plantation Hawaii in the 1920s and 30s—they definitely had a 3rd world mindset. (I myself am 60 now.)

      Not understanding about your 3rd point, uneven skill sets, people whether family or non-family were not supportive. They could not conceive that I would have a "high IQ" or be successful as a computer programmer, yet be unable to deal with social situations or tasks of daily life.

    •  Thanks for this (4+ / 0-)
      Recommended by:
      Lisa, Xan, PanzerMensch, Frankenoid

      We have an acquaitance who is 42 and has AS.  We share a common passion for a 70s-80s prog rock band, hence that's how we met.

      She is "tough" to be around in all the ways people here who've described people with AS know all too well.....until you realize she has AS.

      She's easily "tweaked", to coin a phrase from another fan of the band, thus, if something's not quite right, well, she gets very agitated.  And the bullet point above about taking criticism is right on.  She's painfully aware of her limitations--the key is approaching her in just the right way so as to provide help with out "tweaking" her.

      We hold an annual fan gathering of this band every year.  She's been attending two years now.  First year was slightly rocky since she wasn't familiar with the surroundings, the people, nor us with her.  This past year was much better because everybody knew what to expect and vice versa.

      And we stumbled onto another common passion that helped in ways we could have never foreseen.

      Each year, part of the festivities involve a formal tribute concert from the tribute band--it's rough, the fans who happen to be amateur musicians participate and work on a short set list throughout the year, get up and play 6-10 songs.  We then do something called "band hampered karoake" where audience members can sing and are backed by the band...who know the songs to varying degrees of "not butchering it too badly".  But we also have another night where we jam and anybody can come up and play an instrument.

      This year, she came up to play keyboards--yes, she was "tweaked" as we worked on getting things setup just right but she settled in while I had to run off somewhere to take care of something.  I wander back into the room where this is going on and the tribute band's bass player is running the sound board.  He motions me over and sez "listen to this" and proceeds to turn her way up in the house mix.

      Incredible.  Absolutely incredible.  She was playing things that were sequenced on albums.  She could play passages from Rush's 2112 (several of her fellow jammers are huge Rush fans).  To coin a phrase of one of the jammers up there "she's Mozart".

      Yes, this follows a pattern of people with AS and I raise it here not to simply highlight another manifestation of the syndrome, but to relate how it helped her.  Talk about a self-confidence, self-esteem boost.  Talk about how others were much more at ease interacting with her.  I mean she's impressive and when entering into a conversation around that, it tends to take the rough edges off of both parties as they struggle to effectively communicate with the other.

      I'm not splaining this very well other than to say that while this is an evolving story, it's one that's got a happy ending thus far.  We non-AS people get an insight not only into someone with this, but we learn how to communicate better.  And vice versa.

      She really is an incredible keyboard/piano player.  Wow.

      •  That's why we are careful (1+ / 0-)
        Recommended by:
        PanzerMensch

        to point out to Ian where his autistic tendencies are an advantage: being autistic isn't all bad!

        Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

        by Frankenoid on Wed Nov 22, 2006 at 06:33:30 AM PST

        [ Parent ]

        •  not all bad (2+ / 0-)
          Recommended by:
          Lisa, Frankenoid

          For me, the high points were the attractive cheerleaders asking me for the answers to their math homework.

          Remember remember the 7th of November

          by PanzerMensch on Wed Nov 22, 2006 at 07:59:34 AM PST

          [ Parent ]

        •  She has an autistic child (0+ / 0-)

          We've never met her son, he's 8 and I don't know where on the spectrum he lies.

          She's got a 4 year college degree, lives fully independently and for all I know, is better suited for raising an autistic child than most people.

          And she has a skill/talent for hearing music, then being able to play it at an almost virtuoso level, that musicians like me will never achieve.

          They say that Beethoven was manic and yet, that was part of his musical genius.  A modern day pop Mozart, the late Kevin Gilbert, was another.  Their "mental state" was central to their genius.

          So yes, Ian's got some things going for him that others will surely envy and working with/toward those strengths will only make him happier and better able to deal with the rest of the world.

          Good luck.  This is a fascinating diary and commentary.  Thanks for sharing.

  •  I suspect my son has Asperger's. (9+ / 0-)

    I recently read an article describing Asperger's, and was astonished at how it fit my son's characteristics.  Intellectually, he very impressive.  His problems are on a social level.  He seems quite immature, and has had problems relating to his peers.  He sometimes says or does inappropriate things.  He has a group of friends, but doesn't make new friends easily (although he wants to).  He's easily offended.  He takes criticism very hard.  He often feels "everything's his fault".  Socially, something sometimes just isn't "quite right".

    He's 19, a freshman in college and is getting great grades.  He's a fantastic writer, which is good that he communicates well in writing because he has speech problems.

    He was diagnosed with a severe speech disfluency when he was six and underwent years of speech therapy.  He's made amazing progress, but still struggles a bit sometimes.

    A year ago, we discovered he had been born with Rieger's Syndrome.  We found out about it when he developed juvenile glaucoma, which nearly destroyed his eyesight.

    I know I should take him in to get a formal screening for Aspergers (and I do plan to do it), but he's so upset about having the stuttering and Reigers and the glaucoma, I don't know that having him diagnosed with Aspergers wouldn't send him off the deep end.

    I worry about how he'll fare out there in the real world as an adult, can he hold down a job, can he manage his affairs after my husband and I are gone.  At least he has an older sister who can keep an eye on him.

    Sorry to ramble.

    •  well (4+ / 0-)
      Recommended by:
      Xan, snakelass, Frankenoid, edwardssl

      you can try Yale...someone here mentioned Northwestern...I suspect a lot of high functioning Asperger's patients are not aware they are anything other than "quirky" by the way there is a great book for parents called Quirky Kids about all these disorders....my wife's boss for instance. Dude's from Russia, is totally immersed in his research. he starts an experiment at 8:30 at night, now my wife is still there because she saunters into work about 11 am ( and he doesn't seem to be bothered by this )because she is from Colombia and time there is more a "zone" than it is for us gringos ( this is her explanation, not mine )and she tells him its kinda late. He's like, oh, do you need to go home? Yes, she says, i have two kids you know..dude is completely clueless, has zero social skills, and genuinely doesn't get that folks may have other priorities...other people have screamed at him and asked for transfers, but my wife likes that he doesn't notice what time she wanders in...I think he may be on the high end of the Asperger's spectrum, but hey I'm not a neurologist...

    •  do you think there would be some (1+ / 0-)
      Recommended by:
      edwardssl

      benefit to him for having a new name for his way of being?

      There are many, many high-functioning autistic people in the world who had a tough time in school but, like your son, have a group of friends and areas of success (e.g., school, work) that just gets better and better in adulthood, where they have more control over their environments and can find niches to suit their strengths.  For many people, that's the definition of a successful life.

      If you think your son might be helped by knowing more about why some social situations are confusing or troubling to him, I think it would be a good idea to broach the subject at a time when he's not feeling discouraged or damaged.  It's always good for us to learn more about ourselves.  Self-help books are always on the best-seller lists!

  •  another thing about Asperger's (2+ / 0-)
    Recommended by:
    sobermom, Frankenoid

    many of them have a thing for the Civil War, even if they live outside the US. No one has a clue why...about 15 years ago the local paper ran a story on a kid who was fascinated with the Garden State Parkway. The commissioner met the kid andhis family, and it all seemed harmless enough..the kid had parkway memorabilia all over his room. I think we can say today the kid might have Asperger's... I also knew a dude growing up who was basically a shut in but had an encyclopedic knowledge of Star Trek ( it was rumored that Shatner's rant on SNL was directed at this dude ) and he would write literate letters to the editor about Star Trek...this was before anyone ever heard of Asperger's...the Civil War thing I heard about on NPR's the Infinite Mind...

    •  jerseydan, that is absolutely fascinating (1+ / 0-)
      Recommended by:
      Lisa

      because you see I run a Civil War magazine and we have a trivia contest. Some of our regular players--who indeed come from all over the world, including a very nice French lady and several from Russia--come off as a bit...odd. We've always written this off to language differences/difficulties, with the addendum that anybody who takes that level of interest in the history of a country not even their own is going to probably be considered peculiar by those of his own nationality as well.

      But this gives a whole new perspective on the matter. :)

      btw my brother I now think would have probably been diagnosed somewhere on the autism spectrum, although this was pretty much unknown in small towns in Illinois in the 1960s. Severe problems relating to people he didn't know, social/school settings (he solved the problem of one kid picking on him in the cloakroom by flushing the kid's jacket down the school toilet) and the issues related by everyone commenting here.

      His thing was the Guiness Book of World Records. He had that sucker memorized and every time a new edition came out he read it until his mental files were completely updated. He did this purely for his own enjoyment, and was never a pest about inflicting the information on anyone else, but it came in quite handy every time the folks took him to a new program and they wanted to write him off as retarded.

      This is bringing back many adolescent/youthful memories (I was the eldest and he the youngest, nine years between us with two sisters in between) of a decidedly wistful nature. He never had to cope with the condition as an adult as he got bone cancer at 15 and died at 16. I still miss him and find myself wondering what he would be doing today.

      Where are we going, and why am I in this handbasket?

      by Xan on Wed Nov 22, 2006 at 09:31:56 AM PST

      [ Parent ]

      •  it sounds like we lost a (1+ / 0-)
        Recommended by:
        Xan

        good one when your brother passed.

        LOTS of things that were seen as oddities in the past are now being diagnosed as autism spectrum disorders.  The good news is that some kids who might have suffered with really difficult situations are getting good help.  The bad news is that lots of kids are being labeled as autistic when they might just be a little weird.

        Weird, remember, is not bad.  It's just weird.  And not all weird people want to stop being that way.

  •  Hi Franken (2+ / 0-)
    Recommended by:
    Frankenoid, ormondotvos

    The funding of education for special needs has always been the passion of my ex-wife. I learned a lot from her. She holds a degree in nursing and owns a Montessori School in Denver.

    Senator Edwards and his wife have been at the forefront of this fight for families for a long time.
    I am endeared to them for their understanding.

    One of my best friends has an autistic child. OMG... what a challenge! I am amazed at the energy it takes to engage him.

    I am loving you for the extremely competant, articulate and talented man you appear to be. Sounds like childfind and JFK center have taken you and your husband down the path... like so many the path ends at middle school and it's a crap shoot beyond that.

    The Denver Academy was for many years, the finest school in the nation for special needs kids. I have been an active supporter in the past and have sent many a recommendation their way. I am not sure of AS kids.

    Start early as scholarships, grants and funding is competitive and requires a focused parent to cut through all the red tape.

  •  as an autistic adult ... (9+ / 0-)

     I can confirm that its quite a task to live amongst you NTs ...

    "Religious bondage shackles and debilitates the mind and unfits it for every noble enterprise" - U.S. Constitution author and fourth President James Madison

    by Iowa Boy on Tue Nov 21, 2006 at 08:58:50 PM PST

  •  just a parting thought (5+ / 0-)
    Recommended by:
    Xan, snakelass, Frankenoid, Fabian, wa ma

    I case manage a lot of kids with these problems; from the case manager perspective, these children are less stressful to work with than "emotionally disturbed " ( the term we use to lump juvenile delinquents in with kids who have serious mental disorders, since no one likes to use the more appropriate, but less palatable, "socially maladjusted" )but most of all, I want you parents out there to know that I learned a great deal from this diary and subsequent postings, and will be discussing this topic with my students' parents, ( and also my students!)and passing along info...thanks

    •  I get a kick out of that characterization! (2+ / 0-)
      Recommended by:
      Xan, Frankenoid

      My friend's son has bipolar.  The traumatic onset came three years ago, knocked him completely out of school for half a year and since then he's been steadily taking on more classroom time.  Now he is in a class for "emotionally disturbed" kids where he sticks out like a sore thumb.  He's bright, productive and thinks the most of his classmates are lazy jerks.  Yes, most of his classmates are JDs but at least they are JDs who are getting some kind of education.

      We must never lose it, or sell it, or give it away. We must never let them take it from us.

      by Fabian on Wed Nov 22, 2006 at 02:31:33 AM PST

      [ Parent ]

    •  Juvenile Delinquents (0+ / 0-)

      I have to say as a teacher of students with emotional disturbance that not one of them is just a "juvenile delinquent".

  •  I think I might have AS (2+ / 0-)
    Recommended by:
    ormondotvos, condoleaser

    What should I do?

    •  Here's a place to start (1+ / 0-)
      Recommended by:
      ormondotvos

      JFK Partners in Denver.  They may be able to direct you to resources in your area.

      Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

      by Frankenoid on Tue Nov 21, 2006 at 09:45:40 PM PST

      [ Parent ]

      •  I wouldn't know what to look for (3+ / 0-)
        Recommended by:
        Xan, Frankenoid, ormondotvos

        And I don't even know if it is worth getting a diagnosis. What would I do with it besides give my weirdness a name?

        I function pretty well on the most important stuff.  True, I don't have as many friends as some people, but I'm a reasonably successful computer programmer.

        I only learned about this a year ago, and I thought it could really explain everything if it turned out I have some sort of PDD or Asperger's.

        •  I was in the same position (7+ / 0-)

          this time last year.

          I'm 24 now, and finally got officially diagnosed in September.  

          As for the value of a diagnosis, that changes by the person.  After having been diagnosed with ADD and Depression, it was important for me to get that corrected.  But if you've never been diagnosed with anything, whether or not you want it for peace of mind is really up to you.

          As for giving it a name, a lot comes with it.  Knowing whether or not you have AS means you know what to look for when seeking information, assistance, and others in your area.  The flip side is that you need to fight against being stigmatized or marginalized because of it, most of all by yourself.  

          The short answer to whether or not help really helps is that there's no "cure."  There are strategies you can be taught for improving your relationships and interaction, but it doesn't truly change how you think or feel which is the underlying cause for why we behave differently in the first place.

          •  I was thinking the opposite (5+ / 0-)

            If people knew what was going on with me, they might cut me some slack.  I feel guilty that people probably think I'm rude when I don't mean to be. I constantly have to force myself to remember to make eye contact with people (this happened twice to me today).

            Would it be wrong to try to win a little sympathy?

            •  Hang in there Dora. I think you have (6+ / 0-)

              the right idea. I'd strongly advise against pasting a name on your particular constellation of characteristics, if only for not triggering the tendency for people to pigeonhole.

              What if you brought up to the surface a simple "I like you!" hidden as a small compliment, like noting people's eye colors, or their laugh wrinkles? It's good training for expertise in what other people do automatically.

              Remember also that there seems to be a reverse kind of autism, where everything everyone says is so important that you lose yourself in empathy, and there's no you there.

              Temple Grandin, in her book "Thinking in Pictures' gives many helpful hints for those of us who are somewhat uninterested in facial clues, body language, common "warning words."

              Good luck. It's taken me years to get to where I now get an occasional compliment on my social graces. For a long time I followed that lame libertarian "Who gives a fuck what you think!?" phony self-made attitude that is so often a cover for just not being strongly engaged emotionally with people.

              It does have some advantages. Like Temple Grandin, I have an excellent imaging ability.

              I can't remember names, although I can always tell you what kind of car you drove in, and if the valves are adjusted right...

              Politics needs Darwin/Dawkins...

              by ormondotvos on Tue Nov 21, 2006 at 10:58:18 PM PST

              [ Parent ]

            •  Workplace discrimination (2+ / 0-)
              Recommended by:
              snakelass, Frankenoid

              To add to my own comment:  I'm thinking that being diagnosed with a disability might protect me from discrimination at work.  I work in an environment where people would probably be understanding.

              I believe I have been fired from at least one job in the past over my situation.

            •  A book for you (5+ / 0-)

              Coming Out Asperger by Dinah Murray.

              It's pretty much a book that deals with exactly that issue, whether to get diagnosed, how to tell others, and so on.  It's a good place to start.

            •  sympathy is always good (0+ / 0-)

              And letting co-workers or others you regularly interact know about any limitations (whether or not they have a name!) is always a good idea, provided they are trustworthy players.  For example, I need to take prednisone sometimes to manage a medical condition.  It can make me crabby and irrational, and I think it's only fair to let my family and co-workers know.  If you feel the need for slack, maybe people aren't fully understanding what works for you.  Maybe you can help them with that.  I don't think you need a label to say any of that.

              By the same token, I know my co-worker is OCD (whether or not she's been diagnosed), and I try to be really careful and detailed in the work we share because that soothes her.  I also have gently taught her (through my own incompetence) that mistakes are not fatal.  Since we've worked together, she's begun to say "I made a mistake" and "I'm sorry."  She seems looser and happier.   That took about 3 years.  Maybe she's seeing a psychiatrist, has a dx and is taking meds and the improvements have nothing to do with me at all.  It's all good.

              I guess I believe relationships of all kinds can be therapeutic.  I know my marriage has been for me.  Parents can make a huge difference in how their kids manage their own limitations, through the use of encouragement, humor, explicit teaching, etc.  Not everything needs to be managed through meds and professional therapy (though some things do).  

              I hope things get easier for you.  There are some wonderful books written by adults who have autism spectrum disorders, some of which contain explicit social skills training, and some of which celebrate the differences and exceptional qualities that the autism spectrum has brought to their lives.  If you like to read, this might be a good way to explore yourself.

    •  I am 99.99% sure my brother has Asperger (4+ / 0-)
      Recommended by:
      ParaHammer, Xan, Frankenoid, Fabian

      After decades of watching him fail socially in all contexts, and suffer because of it, I read about AS and it all made sense.  He is smart and very creative but he has a hard time getting or keeping a job.

      He did very well when he was in a military environment, he adapted to the structured life, but in civilian life he is toast.

      Dailykos.com; an oasis of truth. -1.75 -7.23

      by Shockwave on Tue Nov 21, 2006 at 10:21:28 PM PST

      [ Parent ]

      •  It makes me wonder about the military. (3+ / 0-)
        Recommended by:
        Shockwave, snakelass, Frankenoid

        Some ex-military transition gracefully to civilian life and some, well, some you can just tell the military never left them.  (BTW - not talking PTSD or such, just a yearning for a highly structured world.)

        We must never lose it, or sell it, or give it away. We must never let them take it from us.

        by Fabian on Wed Nov 22, 2006 at 02:35:16 AM PST

        [ Parent ]

      •  A colleague's daughter has it (3+ / 0-)
        Recommended by:
        Shockwave, snakelass, Frankenoid

        and he recently discovered that that is what it is.

        She is on meds (not sure what they are), but all the signs are there.  She is INCREDIBLY bright, but socially inept and can't hold a job.

        -6.5, -7.59. The ice is melting, the White Witch is losing her power

        by DrWolfy on Wed Nov 22, 2006 at 04:07:43 AM PST

        [ Parent ]

    •  what would you like to change (0+ / 0-)

      about yourself or your life?

  •  For the first time . . . (10+ / 0-)

    I am not reading the thread before I write.  My husband and I were foster parents for an autistic child for fifteen years.  He came to us when he was 6 - he's 29 years old now.  When he left us at age 21, we were told that we must never see or contact him again, because is mother took him in with her for the first time.  I dream of him every night.  Life with him was difficult and fulfilling in ways I never could have imagined. I am not writing this for any response - only to write.

  •  I have reason to believe research and effort is (5+ / 0-)

    necessary in this area.
    My grandaughter from one family is high functioning autistic and a grandson from another is ADD.  In each case they are smart and they are plucky.  But in each case social skills are rare to none existent in areas.  I have 5 grandkids and it strikes me that the incidence of occurrence is rising and something happened to cause this.  I do not remember children having this problem when I went to school in the 40's and 50's.  Indeed I sampled many schools so I feel I have a great deal of information about it.  Children were able to be herded meekly through the school day and although we had some that did not do well always in all things, that seemed to me to be normal.  These kids, my grandkids, seem to be totally unable to navigate the school system successfully without intervention.  And it is not because they do not learn!

    So what has caused this increase?  On the other side of life, Alzheimers has been likened to an epidemic.  So why are we not funding research into that area as well.  Surely we do not want to find ourselves in the same state with out loved ones dealing with the shell of who we were.  As a nation we have failed even understanding what priority means.

  •  Is Europe and Asia (2+ / 0-)
    Recommended by:
    Frankenoid, yinn

    seeing such increases in autism, etc as the US? I know very little about this. Sometimes I think the increases may be due to the chemicals and artificial hormones we put in our food.

    "I don't think the heavy stuff is coming down yet"

    by MadMs on Tue Nov 21, 2006 at 11:48:32 PM PST

    •  China is. (0+ / 0-)

      A few weeks ago I was reading that autism, virtually unknown in China before now, has rising rates. The context was the correlation between rates of autism and the rising rates of immunizations using American-made vaccines in multiple-dose vials, which contain the mercury-based preservative thimerosol.

      This correlation exists for the U.S. but starts in the 1930s for us.
       

      All my peeves are my pets.

      by yinn on Wed Nov 22, 2006 at 08:49:54 AM PST

      [ Parent ]

  •  Recent diary on gifted kids (1+ / 0-)
    Recommended by:
    Frankenoid

    We still have waves of gifted kids hitting schools... most of which have no clue how to deal with them.

    Be good to each other. It matters. Bill Sali

    by AllisonInSeattle on Tue Nov 21, 2006 at 11:55:33 PM PST

    •  these things are all related (1+ / 0-)
      Recommended by:
      AllisonInSeattle

      i was identified as a gifted child in the 70s - but i guess no-one really knew much beyond that in what to do or how to prepare me for what that meant

      and now i have an autistic son and apart from the feelings of guilt and it being my fault, which are natural, i also see it as telling me something about myself growing up

      i see behaviours in him that his mother seems totally perplexed by that personally i can see them as slightly exaggerated versions of my own behaviour and i understand the 'logic' behind what he is doing

      in fact what is most heartbreaking is how little diference there is between his behaviour and my own at the age but how much impact those small differences make

      of course - doesn't help much

      but the point is that so many parents who were gifted children seem to be having children with pervasive developmental disorders

      If no-one around you understands start your own revolution and cut out the middle man...

      by ResponsibleAccountable on Wed Nov 22, 2006 at 11:50:13 AM PST

      [ Parent ]

      •  With all due respect (0+ / 0-)

        I was gifted also, and my personal experience was a little slice of hell. I've never known if now I can understand the "odd ducks" because:
        --can think fast enough to compute what they're up to

        --I care about underdogs, because I was ostracized and told "don't be who you are, you're wierd, odd, and mess us all up by not fitting in" for so long. So that gives me a motivation to understand them.

        --The similarities, as you mentioned.

        But boy, can I understand most of them.

        Please don't take this the wrong way (if gifted, you won't, I'll wager):
        --have u tried him on the Feingold diet? I'm a raving mess if I don't eat mostly natural foods. No sugar, no caffeine, no food dyes or I'm nuts.

        --my friend who's an organic farmer and special ed teacher is convinced it's the deterioration of diet, especially more sugar and food dyes for young children

        --see this article:
        http://tinyurl.com/...

        Ck out what Mom #1, the doctor concludes. Diet. Changes same for her son, he's different.

        Ck out what Mom #3 says. I was in her home. Witnessed breakfast for her son. You want to guess? Dr. Pepper and boxed macaroni and cheese (loaded with food dye, sugar, white flour). "Well, she says, I don't think nutrition has anything to do with it."

        Enough on that.

        Then there's The Handle Institute here in the Seattle area:
        http://www.handle.org
        They're so effective, many of their strategies are moving even into the vocabularies of people in public and private schools in this area. Very well known here. Ck out their testimonials.

        --

        Last but not least. Yeah,  similarities. What's the difference between the guy who's the curator of the toaster museum, the guy who codes at a computer for 14-18 hours at a stretch, the guy who builds displays for museums... the photographer who travels the world with 7 perfectly arrayed cameras for decades ... Van Gogh ... the kid diagnosed with the latest version of "you're just not like us" ... and you and me?

        Be good to each other. It matters. Bill Sali

        by AllisonInSeattle on Thu Nov 23, 2006 at 01:05:53 AM PST

        [ Parent ]

        •  not a whole lot of difference (1+ / 0-)
          Recommended by:
          AllisonInSeattle

          i don't think

          we are moving towards better diet - moving to all organic

          but still too much crap in his diet i think

          i think this is why living in America is slowly driving me nuts and I am having difficulty concentrating or being as effective as i used to be - the diet

          If no-one around you understands start your own revolution and cut out the middle man...

          by ResponsibleAccountable on Sat Nov 25, 2006 at 12:10:36 PM PST

          [ Parent ]

          •  Here's the Feingold link (0+ / 0-)

            http://www.feingold.org/

            Please ck it out. They also talk about how kids (well, and us) can have 5 doses of food dye before we get out the door in the morning (breakfast food, juice, toothpaste, soap, shampoo). Oh swell.

            Agreed re "slowly driving nuts" -- it's a superficial, wacky culture.

            Commend you on working to change your diets. Very profound change. Sure you'll see results.

            Be good to each other. It matters. Bill Sali

            by AllisonInSeattle on Sat Nov 25, 2006 at 01:10:43 PM PST

            [ Parent ]

            •  i also think that (1+ / 0-)
              Recommended by:
              AllisonInSeattle

              even WALKING INTO a Walmart has a bad effect on one's psyche - the overstimulation of visual input is just disorienting...

              ...the brain compensates by just switching off any attempt to process information and filter it through some sort of reasoning... which is the effect they want

              If no-one around you understands start your own revolution and cut out the middle man...

              by ResponsibleAccountable on Mon Nov 27, 2006 at 11:32:35 AM PST

              [ Parent ]

              •  Good ideas, good points (0+ / 0-)

                You're so right, it's what they want. I refuse to go into Sears for the same reason. Just couldn't stand them as a child. Total overload.

                The fluoros alone will do that some places.

                Be good to each other. It matters. Bill Sali

                by AllisonInSeattle on Mon Nov 27, 2006 at 07:39:28 PM PST

                [ Parent ]

                •  and one that people think is odd (1+ / 0-)
                  Recommended by:
                  AllisonInSeattle

                  i just cannot do hardware stores... i get what i can only assume is like vertigo - all those aisles with sharp pointy things make me literally dizzy and my eyes hurt

                  i just think that we are so stuck in overstimulation that we walk around zombied with our brains fried half the time and it is just hard to snap out of it

                  i find it so hard to meditate since coming to America - actually i take that back - since moving to Texas in particular is more accurate

                  San Francisco Bay Area wasn't like this - that was like some small paradise

                  If no-one around you understands start your own revolution and cut out the middle man...

                  by ResponsibleAccountable on Mon Nov 27, 2006 at 09:18:02 PM PST

                  [ Parent ]

                  •  You know the other thing is TV (0+ / 0-)

                    I've tried watching it several days in a row. Used to have on in background while working on a project.

                    But IF I actually sit and watch it in a room, and pay attention to the (aahhhhh) commercials also, even my dreams change.

                    When at other people's houses, I can't believe that they leave the commercials on and volume up... staring at the screen, not even interacting w/ each other during that time.

                    (Shield your eyes, I used to work in a hardware store. Was a machinist, too... love tools. My dad loved tools and had tons, too, so it's a comfort zone for me.  :-)

                    Totally agree re the zombification, most of the time.

                    Be good to each other. It matters. Bill Sali

                    by AllisonInSeattle on Mon Nov 27, 2006 at 11:52:19 PM PST

                    [ Parent ]

  •  I work in a poor school, so the problem (10+ / 0-)

    is not (as one Time writer posited) the large numbers of "bright geeks reproducing with other bright geeks." We too, however, are being inundated with children diagnosed with everything under the sun but a lot of ADD, ADHA, Aspergers, etc...what is going on????

    I especially love the kids with Asperger's, by the way. There is something unexpected and fun knowing that a kid could walk in and be halfway through a conversation with you about the Han dynasty--even though you weren't (to your knowledge) actually participating until the moment they engaged you. Kinda keeps you on your toes.
    As for the other students in the school, they're cool with it and seem to understand that whatever the odd behaviors are, "that's just so-and-so."

    Whatever our childrens' needs, we are not doing enough. One good step is to push to not renew NCLB. I cannot find the words to describe the waste of time and energy generated by that law. Oh, and stop the war and give the money to education. Pretty please?

    •  Diet can be a factor. (4+ / 0-)
      Recommended by:
      Xan, kelaguys, Frankenoid, wa ma

      I self limit my kids' diets due to my own preferences and problems.  No soda, no caffeine(what, are you nuts?), as little HFCS and hydrogenated fats as possible, no thickeners or emulsifiers and no artificial food dyes.  Organic milk only.

      My three year old spits up when fed red food dyes, chocolate milk and pudding(thickeners).  Parent supplied snacks at school range from raisins(me) to Pop Tarts(argh!).

      It's amazing how much stuff my kids DON'T eat!  Diet can't 'cure' too many things, but many people use diet to try to manage various disorders.  If it helps, it's a good thing.

      We must never lose it, or sell it, or give it away. We must never let them take it from us.

      by Fabian on Wed Nov 22, 2006 at 02:45:47 AM PST

      [ Parent ]

    •  I love the "that's just so-and-so" (2+ / 0-)
      Recommended by:
      Xan, kelaguys

      mentality.  Isn't that really just the truth for all of us?  My neurotypical son and his classmates all have that understanding of one another -- one has trouble reading, so they help him; another is a drama queen, and they call her on it to help her learn different ways.  There are definitely kids in his cohort who could be (and may be, for all I know) diagnosed with various psychiatric conditions, but that's not the most salient thing at the kid level.  Thank goodness.

      I am so nervous about all the labeling we are doing, especially with the youngest kids, and how profoundly affecting the labels can be.  I much prefer the generosity of spirit of "that's just so-and-so."  I am also up for providing so-and-so with whatever therapies and help he or she might need to feel comfortable and successful.

      You are so right about NCLB!  I see it interfering greatly with what kids need to do to develop in a healthy manner than honors their curiousity.

      •  Admin wants to change our schedule to (1+ / 0-)
        Recommended by:
        Lisa

        double math/double English with no electives because of the pressures to meet the NCLB standards. Our test scores have to increase by some hugh factor this year or we're in trouble. Honestly, they don't know what trouble is until they get rid of art and P.E. Sigh.

  •  Just to add my own story (7+ / 0-)

    The youngest of our 3 adopted kids was originally diagnosed as mentally retarded by his first developmental pediatrician; however, his current DP diagnoses him (and we agree) as PDD-NOS.  At age 7 he has fairly normal gross motor skills and is quite active, but more or less at the level of a two year old.  He can only speak a few words can say "no" or "yeah", but not even his own name); he's been extremely resistant to toilet training and must wear pullups; he exhibits ADHD behaviors for which he receives medication; is also extremely resistant to grooming activities, especially getting his hair cut; and exhibits anxiety behaviors, such as abnormal fear of flying insects, for which he also takes medication.  He has keen hearing and eyesight and is very observant, yet is unable to learn even the most ordinary skills, such as eating cereal and milk with a spoon, except at an extremely slow incremental pace.  His behavior is klutzy and/or destructive to the extreme, which magnifies our housecleaning chores by a large factor, and he must be carefully supervised to a much greater extent than other kids his age.  Last year we had planned a family flying vacation until my wife and I realized we simply could not take the risk of putting him on an airplane and potentially ruining the travel experience for ourselves and our fellow passengers - so my wife stayed home with him on that occasion while I vacationed with the two older kids (usually, I'm the one who stays at home).   The extra care he requires creates huge inconveniences that disrupt our personal and professional lives.  We love him dearly - in many ways, he's still our baby - but we're sad to now realize he will probably be disabled throughout his life, barring any miracle cures.

    Just one day at a time.  Good luck to you all with your own situations.

    •  What is PDD-NOS? (0+ / 0-)

      It's been mentioned in many of the comments, and I don't know what it is?

      •  The technical moniker for (0+ / 0-)

        autism is "Pervasive Developmental Disorder" -- PDD

        PDD has subtypes -- Kanner (classic autism), Asperger's, Rett's syndrome.

        "NOS" is "not otherwise specified" -- meaning the kid is on the spectrum, but doesn't fit any slots.  Sometimes HFA ("high functioning autism") and PDD-NOS are used interchangably.

        Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

        by Frankenoid on Wed Nov 22, 2006 at 12:54:49 PM PST

        [ Parent ]

        •  Thank you. (0+ / 0-)

          I felt a little lazy after posting my question, as I probably should have googled it, but your answer was so concise and clear I'm sure it would have taken me ages to distill it to that point.  Thanks again.

  •  that it matters (1+ / 0-)
    Recommended by:
    Frankenoid

    what kind of autism your child has is because things are wrong based on the rule of law. we will try and end this and all other instances of injustice. if we can't imagine we're doomed. who knows what tomorrow will bring?

  •  I have aspergers (8+ / 0-)

    I don't know about drugs for 10 year olds, but I found that a drug called risperidone (aka risperdal) or something like that helped me.

    I can only speak for myself, but I believe in my case it helps me to focus my thoughts better and think more clearly.

    I find this totally true from an earlier post: Pragmatic?  Oh, yes, Asperger's children are often extremely pragmatic!  The eddies and currents of emotions and relationships can be of little concern to them.  They are 'reality based' people and find known facts easier to deal with than the shifting tides of personal politics.

    I'm not sure what 'the shifting tides of personal politics' means, but I know that I'm not very emotional and I rarely ever panic.  I'm often telling people around me to calm down, keep things in perspective and try and think rationally.

    •  Can you tell me more about the ways Risperidone (2+ / 0-)
      Recommended by:
      Xan, Frankenoid

      helped you?

      Specifically?

      thanks

      •  I can chime in here... (0+ / 0-)

        It's helpful in that it sort of helps turn down the volume in small doses (0.25mgish), and can help with meltdowns and panic attacks and the like on an as-needed basis. It works pretty quickly - within an hour. It's been restricted to an as-needed basis with me, but basically during times of high stress it helps my functionality significantly.

      •  Only a little (0+ / 0-)

        I'd say I'm not a chemist so I don't know how these things work, but I'm pretty sure the brain chemists don't know how they work either.

        The problem with me fully explaining it is two fold
        1.I'm positive I have aspergers, but I've haven't been officially diagnosed with it.  If you look over my posts, you can probably gather something because I'm obsessed with numbers.

        2.I was given 2 drugs, so I can't say 100% for certain which does what.  I was put on effexor which is an antidepressent and the risperidone.  Effexor is nasty in a lot of ways but it seems to be effective for me. It's extremely nasty in its effects if you miss taking it for a day.  Apparently among 'prescription pill poppers' it's termed 'side Effexor'.

        The reason I assume it's the Risperidone that helped me and not the Effexor is that the Effexor is just an antidepressent, and I don't see why it would effect my 'thinking functioning'.  Risperidone is literally  an 'anti psychotic'.  It's primarily prescribed for people with schzitophrenia (sp?).  It's job is to somehow clear away excessive thoughts and focus the mind in a 'straighter' fashion.  If you ever saw that episode of The Simpsons where Bart was given a drug called 'Focus-in', I'd say Risperidone, for me anyway, is probably the closest thing that exists to something like that.

        Anyway, prior to going on the medications I was often unfocused which left me lethargic.  I just find myself mentally much more focused.  As I said, I don't know for certain that's the effect of the risperidone, but I am quite glad that I'm taking it.

        For a 10 year old though, I don't know.  Like I said, I'm not a brain chemist or anything, but I do wonder about the effects of all these presciption drugs like Prozac and Ritalin on developing brains.

  •  Amazing (6+ / 0-)

    Some of the people I admire most on dkos have weighed in here and have children or family members with some form of autism or some other situation that helps them relate to this situation.  I've got three ADHD boys.  All of them are very different, both gifted and challenging in their own ways.  One has other issues that remain undiagnosed and some of his characteristics sound a lot like high functioning autism.

    Thanks for this diary, Frankie.  I so admire the families in these situations.  It is so incredibly difficult sometimes, but also it stretches one's limits and builds character in an incredible way.  Most of all it helps a person develop the ability to see things from another person's perspective, have true compassion and understanding, to break away from the need to be accepted and to conform, and to be brutally honest with oneself.

    "War against a foreign country only happens when the moneyed classes think they are going to profit from it." -- George Orwell

    by joanneleon on Wed Nov 22, 2006 at 04:09:20 AM PST

    •  not surprising (0+ / 0-)

      teh obsession with niche topics (like politics in depth) particularly when matched with the high levels of empathy required for genuine passion on progressive subjects fits well with the sort of personalities that tend to be high risk-factors for autistic children

      i lived in Silicon Valley for a few years and there are epidemic levels of spectrum disorders out there

      (yet a poxy little ISD in Texas is where I find the most incredible special ed program - go figure)

      If no-one around you understands start your own revolution and cut out the middle man...

      by ResponsibleAccountable on Wed Nov 22, 2006 at 11:53:53 AM PST

      [ Parent ]

  •  possible link between autism and Lyme disease (2+ / 0-)
    Recommended by:
    tryptamine, Frankenoid

    From ei-resource.org:

    "...While the above factors may indeed be important, a less publicized explanation could lie with undiagnosed Lyme disease. In December 2004, Kathy Blanco published an article called "Autism - A Type Of Lyme Disease", in the journal Medical Hypotheses. This article describes in detail how Lyme disease may be amongst the triggers for development of autism and related developmental disorders.

    A possible route of infection would be from the parents. Lyme disease is usually transmitted through a tick bite but it is now thought that the Borrelia burgdorferi bacterium that causes Lyme disease can also be passed through bodily fluids, including semen, breast milk, and gestational fluids in the womb. The mother may unknowingly have been infected by her partner or a tick bite (symptoms may not show for years), and then pass the infection on to her child whilst in the womb, or through breast feeding. This possibility needs studying carefully so that parents aren't left feeling guilty for their child's illness.

    Lyme disease is the fastest growing vector-borne disease in the US with some experts estimating that the number of new cases every year is close to 200,000. As with other environmental factors being studied as possible causes of autism, the fact that Lyme infections seem to be increasing, lends credibility to the idea that they may be involved."

  •  I have CAPD and Aspergers (9+ / 0-)

    I was born in 1976. I was an early walker, but extremely late talker. I had my own language before speaking English. I also frequently stared out into space. My parents had me evaluated and were initially told I was autistic. After a year in special ed pre-K [wherein I can say I rode the short bus], it was discovered I wasn't autistic; I just had Central Auditory Processing Disorder. My mother was told that for me to pay attention to anything being said to me, she would have to make eye contact. Easy enough for my mother. Would school teachers be hip to that?

    Kindergarten, I was mainstreamed into classes with the rest of my peers. My teachers there and in 1st grade were made aware of my situation and helped me along when I needed it. My 2nd grade teacher would have none of it, though. Two weeks later, I was moved into another teachers classroom, and things got back to normal. But, the damage was done; I became extremely self aware of what was politely called a "learning disability". I socially withdrew from any friendships [which led to spending the next 10 years being an easy target for bullying]. I also began to severely struggle with homework. An assignment that should have taken no more than 10 minutes would take me over 2 hours to complete.

    It wasn't all bad. In about the 3rd grade, it was discovered that I excelled at math. While my peers were learning multiplication of single digit numbers, I had virtually memorized multiplication tables for numbers up through 21. My problem, almost predictably, was an inability to work my way through mathematical word problems. And incomplete homework was a neverending problem that often had me held back any given school day to finish an assignment, not to mention endless ridicule from my peers.

    I got through high school, though it was often a challenge. By then, I had learned different little ways I could keep myself focused in a classroom lecture. Some worked better than others, and I graduated just below the top 100 in a class of a little over 300. After HS, I went to college to study meteorology, but had to bail on that because I was failing physics so badly, and ended up with a degree in geography [who knew one could study that?].

    I'm now 30 years old. I'm married and have a job using my degree. Though few people at the office are aware of it, I still show many of the classic CAPD symptoms I showed when I was 3. I still prefer near-silent work environments. I still have to ask people to write down very specific directions to do something [side note: last year, I was sent to a client office to work on their system. The procedural instructions were so shoddily written, I couldn't understand them at all and had to re-write them all for my own reference. The client liked my instructions so much, they incorporated them into their own user manuals]. I still don't do well in keeping up with or participating in conversations with a group of people. I'm still very easily distracted; its like someone else has the remote control and just keeps changing channels at random. And I still occasionally will stare out into space for hours at a time.

    I don't think I have ADHD. Even if I did, I refuse to take medication for it. I think I'm doing just fine without meds.

    Remember remember the 7th of November

    by PanzerMensch on Wed Nov 22, 2006 at 05:01:10 AM PST

    •  in this day and age, (2+ / 0-)
      Recommended by:
      Xan, PanzerMensch

      you might have been placed in a Special Day Class for children with autism and given hours of occupational and speech therapy, along with discrete trial training.  You would have internalized the message that there's something wrong with you that you can't personally find a way to accommodate (you need a specialist for that).  I am sorry for the suffering you endured, especially the social ostracism.  However, I am so glad you came up the way you did, with a sense of self intact enough to find your own solutions.

      Your line, "I think I'm doing just fine" is so heartening.  I think we all have to cope with a lot, whether or not there's a name or label for it, and ending up where you have is really the goal.  Congratulations for liking yourself and your life!

      •  thank you for the kind words (1+ / 0-)
        Recommended by:
        Lisa

        Yeah, getting picked on sucked. But, as I said elsewhere in this thread, the silver lining was that I was a go-to guy for math homework for some of the less-than-bright cheerleaders.

        Remember remember the 7th of November

        by PanzerMensch on Thu Nov 23, 2006 at 06:25:44 AM PST

        [ Parent ]

        •  ya know (1+ / 0-)
          Recommended by:
          PanzerMensch

          I'm not exactly a cheerleader, but when I was in grad school there was a really geeky guy who understod stats inside out.  I liked him.  He only seemed to want to give me stats info, and never really seemed interested in talking more. I wonder if he misunderstood my interest in him -- thinking I just wanted some stats help -- or just wasn't interested in talking with me.  I always assumed the latter.

          •  geeks and self-defeatism (0+ / 0-)

            Most geeks rationalize that there's no reason to subject themselves to further rejection and humiliation. That whole "fool me once, shame on you; fool me twice, can't get fooled again". So, they come off as standoffish.

            I imagine having Asperger's only compounds this. :)

            Remember remember the 7th of November

            by PanzerMensch on Thu Nov 23, 2006 at 11:35:05 AM PST

            [ Parent ]

    •  Thanks for writing this. (1+ / 0-)
      Recommended by:
      PanzerMensch

      This sounds like my six year old. He, too was diagnosed with autism at an early age primarily because of his speech delay. But eventually every speech and accupational therapist and special needs specialist ends up working with him on following directions.

      I had never heard of CAPD until your post and looked online to research it some more and I really think this may be the answer to my sweet, smart and kind son's inability to follow directions.

      We WILL be getting him tested for CAPD.

      I honestly can't thank you enough.

      Truth is like sunshine. We used to think it was good for you.--Peggy Hill

      by The Empress on Wed Nov 22, 2006 at 10:15:27 AM PST

      [ Parent ]

      •  Oops...this was meant for PanzerMensch (0+ / 0-)

        Though you make some good points aswell, Lisa.

        Truth is like sunshine. We used to think it was good for you.--Peggy Hill

        by The Empress on Wed Nov 22, 2006 at 10:22:17 AM PST

        [ Parent ]

      •  you're quite welcome (0+ / 0-)

        Following directions for me ended up being a matter of repeating back, or to myself, directions, if not writing them down. I doubt my bosses think I'm slow [they wouldn't have made me a project manager otherwise], but they probably think I just like to be clear on what to do.

        Remember remember the 7th of November

        by PanzerMensch on Thu Nov 23, 2006 at 06:19:00 AM PST

        [ Parent ]

  •  Frankenoid (2+ / 0-)
    Recommended by:
    tryptamine, Frankenoid

    Thanks for this diary. I have no children, but have several friends who have children on the autism spectrum. They are some of the best-educated and most involved parents I have ever seen.

    I will be saving this diary for them; there are many resources here that they may not have seen, and the anecdotes will also be of interest to them.

    -8.00, -7.08

    November 7, 2006 - A New Beginning

    by emeraldmaiden on Wed Nov 22, 2006 at 05:47:53 AM PST

  •  You son reminds me of mine, now 3 1/2 (1+ / 0-)
    Recommended by:
    tryptamine

    Sam loves to cuddle, but does not use sentences to speak and often gets frustrated.  He is doing very, very well in a Baltimore County special ed preschool, for which we are so happy.

    Make Crablaw Maryland Weekly your source for Maryland news and commentary. (-1.88/-5.69)

    by tbrucegodfrey on Wed Nov 22, 2006 at 06:04:49 AM PST

    •  My son (1+ / 0-)
      Recommended by:
      Frankenoid

      is 16.  He was diagnosed in early grade school.  An early intervention pre-K program helped him enormously.

      He is very bright, cheerful, incredibly knowledgable in his areas of interest and has no friends.  None.  He hopes to go to college, and will, but has no interest in learning to drive, limiting his desire to become more independent. Autistic kids are a bundle of contradictions, frustrating and rewarding at the same time.

      But mostly, he is himself.  I love him, accept his strengths and limitations, and want more for him. He does the same.

      The constitution does not provide for first and second class citizens - Wendell Wilkie

      by ms badger on Wed Nov 22, 2006 at 07:47:03 AM PST

      [ Parent ]

  •  I Really Appreciate This Post (1+ / 0-)
    Recommended by:
    Xan

    John Edwards worked hard in the Senate to obtain more funding for Autism research and that was one of the reasons I supported him in 2004. Thank you for pointing out how many different kinds of Autism there are. My younger brother has a moderate form of Autism but it's still a 24 hour job to keep him maintained. We've been lucky that the Florida has the programs it does.  

  •  I've had a few college students in my... (3+ / 0-)
    Recommended by:
    Xan, tryptamine, Frankenoid

    classes with Aspergers' - talk about challenging! I studied everything I could find on the subject but there wasn't a how-to manual to be found anywhere. Each case had to be dealt with in different ways. You're right, Frankenoid, in calling attention to this problem - best wishes to you and your son.

    "In order to be respected, authority has got to be respectable." Tom Robbins

    by va dare on Wed Nov 22, 2006 at 06:24:59 AM PST

  •  People first language (2+ / 0-)
    Recommended by:
    Xan, Frankenoid

    Not to nit pick but where I am it is common practice to put the child before the disability. I do this for myself as well. I no longer refer to my self as an epileptic.

    •  One problem with being (2+ / 0-)
      Recommended by:
      Xan, tryptamine

      too a/r about that is it makes for awkward language usage.

      And when you stop and think about it, the insistence on "people first" language is only used for disabilities or diseases.  If someone is artistically inclined, rather than autistically inclined, there's no hesitation in calling them "artistic" or "an artist".  What a difference a letter makes.

      There is nothing shameful in being autistic; it's the same whether I refer to my son as "having autism" or "autistic".  I don't see the label as pejorative at all.

      Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

      by Frankenoid on Wed Nov 22, 2006 at 06:42:26 AM PST

      [ Parent ]

  •  Frankenoid, Thanks (3+ / 0-)
    Recommended by:
    Xan, Frankenoid, ms badger

    for writing this!  For one thing, you finally got me to fix my user account so I could respond.  (I've been lurking for a long time, but have had difficulty in activating a user account.)  Anyway, I have an adult son with mild autism (though even mild autism is a substantial disability).  When he entered high school, I requested "full inclusion" (mainstreaming, with supports).  I don't regret it; he graduated with a regular high school diploma -- quite an accomplishment for him.

  •  I think you're giving an incorrect impression. (4+ / 0-)
    Recommended by:
    Xan, sclminc, churchylafemme, Frankenoid

    While I agree that there needs to be more money for older autistic kids, you make it sound as though there is plenty of money for younger ones. If there is, I don't know where it's being spent, and it sure as hell isn't Florida. I have a 4-year old autistic daughter and she doesn't get anywhere near "40 hours of a week of intensive therapy". She gets 4 hours a day of pre-school with a teacher who, though well-meaning, has no special ed training, and she gets an hour and half of speech therapy, an hour and a half of occupational therapy (by a therapist is so incompetent we routinely debate whether she is doing more harm than good), and half an hour of physical therapy per week. And we have fought tooth and nail for that. She gets more therapy than any of the eight other autistic kids in her class. I also pay for two hours of therapy (speech and occupational) each week outside of school, because she  responds so well to therapy, but gets so little. I'd pay for  more, but I'm a grad student and there's only so much $75/hour therapy one can afford on an assistantship.

    The situation is better in other states (my mother was a school psychologist and chair of her school districts committee on special education in NY) but it's still not ideal there. The people with money for private therapists are the ones who get adequate treatment.

    Federally, the system is basically set up to deny benefits by default. In fact, we've been told that in most cases they deny you on the first application without even considering the merits, just to weed out those who don't need it as much. And lo and behold, we've been turned down. We're giving it another shot, but meanwhile the best opportunity to help my daughter is slipping away.

    I'm sympathetic to your situation, in part because I know that down the road we will be in it, and because we have friends who are already dealing with it.  I also know that the research has repeatedly shown overwhelmingly that autism is most effectively treated in younger children, and I think if we're going to spend our money, we need to spend the bulk of it where it's going to be most effective.

    I don't mean to sound as though I'm diminishing the importance of services for older autistic persons (or really adults with any handicap), because I do think they are underfunded when they aren't ignored completely. I think our country has historically (recent history, anyway) had this attitude of basically "Well, that's too bad but it's not my problem" when it comes to the developmentally disabled. We make exceptions for kids, because ignoring kids with problems makes us feel too heartless if we think about it too much. Adults with developmental problems just make us uncomfortable, so we'd rather ignore them. It's sad. Until we change that attitude, disabled adults will never get the care they need unless they are forunated enough to have some one with money looking out for them.

    •  There is never enough money (2+ / 0-)
      Recommended by:
      churchylafemme, Southside

      But when I speak of "tons of money", it is a comparative manner -- of the funding dedicated to autism education and research, older autistics are left out.

      The bill currently in congress is directed specifically towards research to the causes of autism.

      A couple of years back, Colorado passed legislation funding educational services, up to $25,000 per year per child, on pre-school autism.

      In none of this special legislation is there any dedicated funding flow for upper-grade autism education or research.

      Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

      by Frankenoid on Wed Nov 22, 2006 at 08:03:17 AM PST

      [ Parent ]

  •  I am an Aspie (2+ / 0-)
    Recommended by:
    Xan, WisVoter

    but mildly, and it's overshadowed by my ADHD. My son has a similar mix. One of my daughters is an easily-recognizable Aspie, and my other daughter has just the ADHD.

    Us ADHD-ers all take methylphenidate (Ritalin,) but there's no meds for the Asperger's bit.

    It certainly is world-changing to get a diagnosis, though. Universe-changing.

    it's a disability in a world where it's unusual. My daughter with Asperger's, particularly, is beautiful, brilliant, an A student, a pianist, author and poet.  

    But when children see her for the first time, you can see dawning on their faces within seconds that my daughter is "different," "weird," and she does not have the social interaction that makes for an entirely happy, healthy life.

    We do the best we can, always, and I think she'll do pretty well. I've certainly learned a lot about how to cope, to "pass for normal," despite my Asperger's and ADHD, but we're not normal, and never will be.

    Sure, it's not really bad, just "different" - but I'd trade for not having this stuff going on. It feels like an impediment.

    (reposted from this diary)

     here's something I've saved for a few years:

    Jordana, nearly eight now, has a journal in which
    she writes every day. She also illustrates the stories
    she writes. Recently, near the back of the half-filled
    book, she wrote about her journal:

    My Journal is long.  I've written lot's of songs and
    stories.  I've written down my thought.  Someday I'll
    become an author of my dreams.  I'll write books and
    be happy.  My journal is the best place to practice.
    I'll read aloud all my journal stories and songs.  Oh,
    my dream is to be a perfect author.  I would spend my
    time writing and never stop.  It would be so much fun.
    I can't wait to be an author.  I shall write my life.
    I shall use ink and be careful.  Oh! I can't wait to
    be an author.

     Aspie? You bet. Challenged? Every day. Gifted? And how. We love her to pieces. Little ones.

    -8.38, -7.74 Schadenfreude is a dish best served piping hot.

    by condoleaser on Wed Nov 22, 2006 at 08:13:40 AM PST

  •  Solution: End Iraq war, increase spending on both (1+ / 0-)
    Recommended by:
    roubs

    autism research and support services for people dealing with the various kinds of autism.

  •  My son is 22 and he was much like what you (0+ / 0-)

    describe. He was main streamed in school and it was very difficult.  He put up with terrible things from other kids, and teachers.

    He graduated main streamed with only resource help, but it was an uphill battle to get the school and the administrators to deal with him and address his needs.

    I agree the autistic are left out of the spot light to get the help they need, and 22 years ago there was no help at all. The financial burden has been just as hard.

    Good luck to you. I wish there was a good network for us, thanks for your post.

  •  I know things are difficult now, but have hope. (0+ / 0-)

    I'm a computer professional, and I have many common symptoms of Autism. My wife, a former mental health professional, often comments that I behave like a high-functioning autistic.
    I didn't read or write until I was 9, and I stuttered for most of my early life.
    However, somewhere around 13, I was finally able to place myself in the world. I knew I functioned a little differently than most people, and I began to investigate the differences. It started out as a very dark time for me, but I was able to begin to use what abilties I had to mimic those around me. It was a very gradual process, and for a long time I was very self loathing, thinking I was some kind of monster for not having these qualities naturally. But as I interacted with the world, I discovered that because some of my traits were manufactured, I had an advantage in how I chose to invoke them. For example, I simply don't experience jealousy. I know when to act like I do, for others benefit, but it doesn't bother me in the least.

    My social lackings made school pretty painful, so much that I dropped out just before the end of high school. It was one of the best decisions of my life however, as I was able to pursue an educational strategy that worked for me.

    I'm still fairly socially inept, but I'm a pretty calm person, and I can manage small talk fairly well without embarassing myself. My wife has helped quite a lot in this regard. :)

    I don't mean to give you false hope, but I can assure you that your son will amaze you with the things he will accomplish. He will face an uphill battle, but there are two things that really got me through the tough times.

    1. The only thing I am really in charge of is my actions. People can make me mad, they can treat me poorly, but they can't actually make me do anything. Only I can decide I will do something. Which means I have to act the way I want the world to be, because that is really my only influence.
    1. Online communication. The lack of emotional information conveyed by text message or email made it much easier for me to communicate on complicated subjects with people. Additionally, the anonymity of the internet allowed me to express myself in ways I never would have had the courage to in person. This allowed me to discover much more about myself, and how I function.

    Best of luck to you and your family.

    •  Emotion in Online Communication... (0+ / 0-)

      I think there is as much emotional weight attached to words as there can be in person, however people tend to ignore the words and pay attention to body language and facial expressions rather than the meaning of the words themselves. If you are careful about your wording, I feel you can convey as much, or more emotional depth than you can in the first person. Of course, I'm biased, and a major fan of the written medium in general. But, even the sentence structure can give weight to the meaning of what's being said and the emotional value behind it. Most of my own emotion detecting systems go based on 1. What's being said, 2. Obvious Facial Expressions (Frown, Smile, Neutral - beyond that, sorry), and 3. Sentence Structure, usually in that order.

  •  a little bit special (0+ / 0-)

    I hope you didn't get your diary title from the stephen lynch song, he is so completely offensive and yet I still laugh.

    Thanks for putting this out there, many still need to be reminded that autism remains a lifelong disease. I suppose the hope for Autism research is that if the underlying cause is discovered, that therapies can be developed which could be effective for autistics of any age. Research into causes can truely move us from coping with the disease to actually curing it. Working as an ABA therapist I found that the 'racing against time' mindset caused a lot of stress and hardship for families.

    •  Autism is NOT a disease (0+ / 0-)

      Where to begin?

      1. It's not a 'disease'. It's a genetic syndrome. Let's look at the dictionary definitions here.

      Main Entry: syn·drome
      Pronunciation: 'sin-"drOm also -dr&m
      Function: noun
      Etymology: New Latin, from Greek syndromE combination, syndrome, from syn- + dramein to run -- more at DROMEDARY
      1 : a group of signs and symptoms that occur together and characterize a particular abnormality or condition
      2 : a set of concurrent things (as emotions or actions) that usually form an identifiable pattern

      And now Disease:
      Main Entry: dis·ease
      Pronunciation: di-'zEz
      Function: noun
      Etymology: Middle English disese, from Anglo-French desease, desaise, from des- dis- + eise ease
      1 obsolete : TROUBLE
      2 : a condition of the living animal or plant body or of one of its parts that impairs normal functioning and is typically manifested by distinguishing signs and symptoms : SICKNESS, MALADY
      3 : a harmful development (as in a social institution)

      Okay, now that that's out of the way, you can see there is a very important distinction here. Autistics are not actually sick, nor impaired of 'normal' functioning. They're impaired of functioning considered normal by society, however it is their baseline normal, and thus, they have no disease. Syndrome is the appropriate term.

      Using 'disease' adds to the stigma we face day, day out in this society. Even if your intentions are good, you are unwittingly and unintentionally adding to the stigma and negative image that I need to deal with every time I need to go and find and hold down a job. And trust me, this is tough.

      Cures are not possible. This is genetic. All you're going to be able to do is possibly, maybe, screen for it in the womb. And that means aborting us. If I was conceived in 2020, I would have been aborted for medical reasons, because my DNA would not have been fit to carry to term. That doesn't change the fact that I'm brilliant, and that the world without my genes would be slightly less colorful, and that this research and aborting babies for undesirable conditions raises huge ethical and moral issues.

      There will never be a cure. You can't resequence my DNA. And if you could cure me, it would be death to me.

      •  difference/disorder (0+ / 0-)

        I take your point, however you are digging into a much deeper debate here regarding what is a difference and what is a disorder.

        Does calling depression a disease further stigma toward those who suffer from it? I don't believe the answer is an unqualified yes in that case or this one. Disorder is an accepted medical term used with autism, yet I believe it still carries the same negative connotation you deplore.

        I'd respectfully disagree regarding cures and genetics. Even if Autism was found to be purely a genetic process, (which it hasn't), genetic disease can be cured without resorting to the drastic measures you mention. Suppose that some individuals inherit a strong  predisposition towards acquiring autistic traits, it is possible that such a predisposition would require a trigger (be it environmental, biochemical or otherwise). One could block the trigger while leaving the genes intact and still cure the disorder.

    •  Yes, actually, I did (0+ / 0-)

      and you are the first person to catch it!

      I love Stephen Lynch; he can be so totally offensive I laugh my ass off (although the one about the ugly baby was pushing it....)

      Leave the cat alone, for what has the cat done, that you should so afflict it with tape? - Ian Frazier, Lamentations of the Father

      by Frankenoid on Wed Nov 22, 2006 at 11:15:21 AM PST

      [ Parent ]

  •  I think we're heading for a backlash (1+ / 0-)
    Recommended by:
    The Empress

    There are currently many, many children who are being incorrectly diagnosed as autistic.  They are being treated differently by their parents, and they are being forced to endure treatments that interfere with their developmental work (e.g., play).  

    Autism is a real condition.  However, the true prevalence is not as great as the current hysteria suggests.  Some parents and professionals seem to have forgotten that we all exist on a continuum on a number of variables, including shyness, irritability, verbosity, inhibition, flexibility, etc.  Not every deviation from the absolute norm is pathological.  

    Some day in the not too distant future we will have a critical mass of mis-identified children who will clamor that they missed their childhoods.  I especially mourn for those in 40-hour-a-week ABA programs that go on for years.  I think we will soon learn that that's like giving someone antibiotics for 5 years to treat an acute strep infection.

    •  agreed (2+ / 0-)
      Recommended by:
      Lisa, vallon

      Though it seems like for every 1 child misdiagnosed as autistic there are 5 children incorrectly diagnosed as ADHD.

      As for the 40-hour a week programs, I was a therapist in one for about 2 years. The program involved considerable downtime, play (both alone and with others), and outdoor activities. I can't speak for all the programs but ours wasn't draconian.

      •  in my neck of the woods (0+ / 0-)

        autism is the diagnosis de jour.  I'm meeting this afternoon with a parent whose son is ADHD and she insists "he has autism, or something related -- like OCD."  This little guy is a whirlwind who wouldn't know a ritual if it slapped him in the face, but for some reason autism is much more palatable to the mom.

  •  I'm yet another AS adult... (3+ / 0-)
    Recommended by:
    alivingston, Spandau, Lefty Mama

    I can attest to the difficulty in maintaining any semblance of civility in daily life. Things fall apart quickly, be it due to lack of maintenance or other issues in just the normal day to day events.

    I'm a survivor of the educational and mental health system. In the 17 years that I've been on medications (I trust you can do the math on when they started me on them - I'm 22 years old), I've gone through 28 different ones, about the same number of shrinks and therapists, and I've never had much help from the system.

    I was able to survive elementary school - barely. My academics were barely adequate to pass, though I clearly learned everything. My rationale for not doing homework was along the lines of, "What do I get out of this?" and the answer, "The satisfaction of a job well done" not being adequate. They also tried to tell me that it was my 'job'. I told them that I wasn't being paid, so it wasn't a job. Things kind of went on like that for a few years, until I hit middle school, wherein a promptly freaked out at the change in formats from the one teacher to the six teachers a day thing. I couldn't handle that kind of load on my brain, and I completely shut down.

    Time to send me over to special ed! My first official diagnosis of AS was during that several month long nonstop meltdown, and my mother didn't like it very much. She didn't like it enough that she fired me shrink over it. And fired the next guy that diagnosed it. She retained the third guy who said OCD, Oppositional Defiant Disorder, Anxiety, Depression, and Adjustment Disorder. Anybody with a psych degree can put all those pieces together and arrive at a spectrum diagnosis. I can arrive at it, and I was a psych student for a semester. So, cue up the short bus and five years of hell.

    I got to see the fifth circle even. What kind of special ed program sticks a spectrum kid into a regular middle school PE program? This is a rhetorical question. But, I really want to know what they were thinking. That is a set up for failure. Also, sticking me into a regular algebra class? While math is my weakest subject? And expecting me to handle that workload without any follow though? Come on! I crashed and burned.

    And then came the fifth circle. After my crash and burning (which included the kiddie mental hospital because these people drove me suicidal), they sent me off to a kiddie mental hospital-lite for 2 years. They even had restraints and locked rooms with mirrored windows for observation, and I got to spend a whole 6 hours a day there getting programmed with a 'regular person' shell, and learning scripts and gaining a 'normal' appearance. Most of all, I learned that when spoken to, never ever speak your mind. Those rules were pretty powerful. It's amazing what can be accomplished under duress when you're 14 and fearing pain. Those rules still apply today, and I've never really figured out how to deprogram it.

    Then flash forward to adulthood. No plans. Nothing. I fake a resume with my parents help, and get a job under false pretenses. Well, I actually have some skills in the computer industry because I'm damn good with them, and what I don't know I can learn in about 3 seconds provided I can muck around and play with them. I got a great job, which I ruined 10 months later when I decided to play whistleblower and reported the company to OSHA after they refused to fix the a major safety and health issue (it involved diesel fumes). They retaliated, and I had to leave.

    I couldn't hold down another job for any length of time afterwards. I tried retail. I couldn't handle it. I was run out of my next job by management after I disclosed the AS issue to them and asked for accommodations after they decided to change my job role after a new supervisor came in.

    Then I decided to try college. I felt that was my big strategic error after finishing my schooling - never going to college. I'd experienced the workplace. It really really sucked. So school... okay, well, I had issues with a professor who would mock me in class, and I had to drop that class (and get a late drop). Juggling all the times and requirements for a transfer to a state school from the junior college was a nightmare. And then my parents reneged on their agreement to pay for college, and asked I carry myself with a job while doing school. I can't manage that kind of split workload. I can barely manage a job, part time, or full time. The walls closed in.

    So I picked a fight. It was a calculated risk, I felt. I demanded my cut of an inheritance that I was supposed to get 1/3rd of, and never received. I demanded it, and I was kicked out for it - without the money. And so, what's somebody like me, without any assets, to do? I had nowhere to go, really. I had a friend in Portland, OR who could help me... offer a hardwood floor for me to sleep on for a few days. That was it. I took it up. And then I went to Portland, lost 4 jobs, ruined my credit, and ended up back in California.

    At least I have a job now. I keep reminding myself to enjoy the stability while it lasts. Never know how long it'll be before they fire me. That's life, I guess.

    The moral is: If you've got a kid on the spectrum: NEVER let them fall into the system. Ever. EVER!

  •  There has been such an enormous waste (1+ / 0-)
    Recommended by:
    vallon

    of the talents and potential contributions of those with AS, or autism. Bravi to all of the parents here who fight so diligently to have the best lives possible for their children.

    The hardest lesson for me to learn was that talent and intelligence don't matter much next to the ability to play a bunch of silly monkey games to 'fit in'. And I am far more fortunate than most; I'm not going to end up on the street, because I have a spouse who cares about me, even if I am 'weird'.

    Yes, I have AS. Yes, I am angry.

    •  Amen (1+ / 0-)
      Recommended by:
      Spandau

      I certainly feel wasted. I could have done so much more with my life.

      I had the same issue. I was always told that I would get into everything on my merits. I'd get jobs on my merits, and so on. I mean, that is so far from the truth. I get jobs based on how well I can bullshit the interviewer, and believe me, that took a lot of learning.

      At least you won't end up on the street. Avoid it if you can. Homelessness really does suck as much as I thought it would.

      Yay! Another angry aspie. We should form a club...

  •  i don't know if i am the only one, but (0+ / 0-)

    in the year or so since my three year old boy was diagnosed on the autism spectrum - and by the way BIG shout out for Spring (Texas) Independent School District for a phenomenal special education program with caring understanding team and real dedication - i have found myself doing a bunch of thinking about this

    i obviously research more and more and read up on this

    and find myself learning more and more about myself as i do so... which is a mixed bag - so many of the tangentially related disorders you look at and recognise features of at least give some comfort about things in my own life - but they also then fill you with the guilt that it must therefore be your fault your son is the way he is

    which a lot of parents go through, i know - the is this my fault, i must have done something phase

    i think the problem with being a gifted child is that people can skip over other issues you may have - i am so glad we have identified my son's challenges early so we can help him with them

    so, i learn more about my son and am appreciative of so many other parents writing their experiences here... but i also think i learn more about my own experiences in the context of the spectrum of disorders... and i am probably not the only parent (i don't think) who through a diagnosis of autism spectrum disorders for their children starts to learn a little about their own experiences

    If no-one around you understands start your own revolution and cut out the middle man...

    by ResponsibleAccountable on Wed Nov 22, 2006 at 11:35:59 AM PST

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