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This is a very personal story of struggle and triumph and disappointment all rolled in together. It is essentially an attempt to both shed some light and perhaps offer some hope to the parents of children diagnosed with high functioning autism spectrum disorders and to adults living with this disorder or who believe they may be. For the record, I am not a psychologist, sociologist, nor healthcare professional of any kind. My knowledge comes from a lifetime living with this condition, a period of intense independent study, and observations of my own child who is also on the autism spectrum.

Some of the information here you will probably not find anywhere else, you won't hear it from psychologists nor school officials. These are some of the details that come from my own internal perspective. Things that may seem like a mystery to an observer, but will likely seem rather natural to those of us with the condition.

At this point, I could go into a long winded clinical type discussion of what Autism and it's related conditions are and delve into a lot of highly technical detail, but that is not my purpose. My intention here is to tell you what my life is like, what life is like for those of us with the condition.

For those in despair, perhaps you will come away with a little less aprehension. But primarily I target this for those who want to better understand what their loved ones are going through and how to deal with it.

My story is inextricably linked with that of my daughter who was identified as possibly on the autism spectrum three years ago. It was at this time that I learned of my own diagnosis nearly 40 years earlier.

Diagnoses
Three years ago (at the age of three) my daughter was suspected of autsim and placed in the early intervention program in the Cherry Creek school district in Colorado. At that age, it's rare to receive a diagnosis, they usually want to wait until the child is a little older to make the determiation. This year, at age six, my daughter was formally classified with Autism Spectrum Disorder. It was the end of a three year period of limbo which finally gave us some closure.

Sofia's language development seemed to begin normally enough, in that at the age of about 14-18 months she had begun to show some understanding of language. We were able to teach her to point to her nose, arms, head etc when we uttered the words. But by age two she no longer was able to do this, and by age three she still did not have a single word of vocabulary.

We knew something was wrong and eventually found ourselves at the Cherry Creek Childfind office at the recommendation of our pediatrician. Then came the bombshell, they suspected autism. What followed was a series of phases; shock, denial, grief, and finally acceptance, etc.

This was traumatic for both my wife and myself, but I was dealt a double whammy when my father, upon hearing of Sofia's condition, revealed to me that at the age of six I had been diagnosed with autism as well. I can't begin to describe the intensity of what I went through. It felt like I was swimming in an ocean of confused emotion. So much to deal with. I had lived my entire life to that point, feeling that something was wrong with me but never knowing what it was. I knew I was a little different, but did not know why.

Perseveration

Perseveration: describing the behavior, generally displayed by those with various developmental disabilities, of extraordinary, exclusive and lasting obsession to a detail or occurrence others consider minor.

If you have seen the movie Rain Man you may remember a scene where Dustin Hoffman picks up a telephone book and begins memorizing it. When I was in my mid teens, my father had a set of Chilton's auto repair manuals. I was fascinated by them and went through them memorizing the engine stats tables. I was able to recite the cubic inch size, number of cylinders, and horse power of every engine made in America from 1960 to 1975. I could also tell you which vehicles these engines were offered in and in which years.

This is a result of two "talents" ASD people often have. Superior rote memorization capability and the ability to perseverate. It's not uncommon for an ASP person to memorize obscure sets of facts like vacuum cleaner parts or presidential trivia. In my case it was automotive engine stats, which by it's nature probably did not seem quite as nerdy or weird as other things might seem considering I was a teenage boy. And back in the 1970's, every teenage boy in rural Georgia NASCAR country was car crazy. It helped me fit in a little better, though that was not really my intention, just a happy coincidence.

Fast forward to 2006, after the first weeks of immense shock, I began doing what I do best, perseverating. In this case, it took the form of researching and reading. In a period of what for neurotypicals would seem like an unbelievable level of focus, bordering on obsession, I had not only amassed a huge cache of knowledge from internet articles, but I literally emptied my local branch library's selection of books about autism, completeing no fewer than thirteen of them in a period of three weeks.

It turns out that in about 1967 I was diagnosed with classic autism. Clearly high functioning, but at the time Aspergers syndrome was not yet well understood and so most children with what we would now call Aspergers were usually either diagnosed as autistic (rarely) or more often diagnosed with some sort of mental disorder such as manic-depression (now called bipolar disorder) or schizophrenia.

Autism Then And Now
In the late 1960's, those of us who were borderline sort of existed in a grey area of definition that often left parents with a difficult choice. Either dump us into an institutional hole and forget we existed, or don't and hope for a miracle. For those who made the latter choice sometimes they were rewarded as we did seem to "grow out of it".

I'm in that very last category. At first, my teachers who of course had no training whatsoever in developmental disorders thought I was retarded, until IQ testing showed exactly the opposite, my Stanford-Binet scores showed me to be within the mensa range. A surprise which initially lead school officials to declare that I had a "learning disability" of some kind and leave it at that.

The school psychologists/social workers however hit the mark with their diagnosis of high functioning autism. It was recommended to my parents that I be dumped into a state institution for the mentally disabled, or they could hold off for a couple of years to see if I improved. Autism was not well understood at the time, but it's symptoms were not altogether unfamiliar to teachers and school social workers of the time. They knew that sometimes kids who stared off into space and rocked in their chairs seemed to myseriously grow out of it eventually, and sometimes they did not.

I became the product of a mixed blessing, my father refused to believe that I was anything other than an unruly child, and my mother refused to dump me into a mental institution, I must say that in some respects I am most grateful for the steadfastness of their attitudes. Had they not made that decision I might be living under a bridge somewhere or perhaps in prison today. I am most grateful that my parents chose not to give up on me.

However, having said that, the other side of the coin is that I never received any kind of treatment or therapy for the condtion. As a result, my whole life to this point has been a struggle to survive in a neurotypical world without having any knowledge of why I am struggling or what I'm struggling against. And believe me it is absolutely a struggle, every day of my life.

Now I don't want to give the impression that my parents were completely indifferent. They were not, but they did not really know what to do. Because they refused to believe I was autistic, they brought me to many different psychologists none of whom had any specific training in Autism. All of whom diagnosed me with ADHD which is generally if not always a subset condition with Autism, but none understood the core condition.

Until much more recently, very little about autism was well understood and most Psych degree programs did not require courses in it, it was usually an elective if offered at all. In the 1960's the condition was believed to be quite rare, about 1 in 25,000 so it was not exactly a hot topic at the time.

It therefore should come as no surprise that most psychologists had little understanding of autism. The general perception of autism at the time was of a relatively severe variety in which the subject did not have the power of speech or was completely unable to function in normal society. What we now call Aspergers syndrome was rarely if ever recognized for what it was.

There has been a gradual evolution in the understanding and recognition of Autism since that time. Again from the the movie Rain Man, there is a scene where Dustin Hoffman is in a psychologist's office being evaluated. The doctor asks him a few questions and then remarks that he is "very high functioning". That was the perception in 1988 when the movie was released, but by today's standards that level of severity would not seem so high functioning, it would more likely be considered moderate. During the 1960's however, it may not even have been recognized as Autism.

The Face of HFA/Aspergers
So what does a very high functioning autistic/asperger really look like? Well, when you first meet them they may seem quite normal (actually neuro-typical is the term we prefer). But after a few minutes you may begin to notice certain peculiarities. For example they might tend to steer conversation over to a topic of interest to them and once there, they can't seem to change the focus of conversation.

Conversational Repetition
They may repeat themselves, perhaps many times. Some of us who recognize that we are doing this will try to rephrase the same points, but the astute observer will notice we are really just saying the same things over and over.

That much might be considered common knowledge. Now, here is the part you might not see in the textbooks, or news articles, or probably even on the internet. I repeat myself in conversation for two reasons:

  1. I miss the social cue that would tell anyone else that the person I am talking to understood what I said. Maybe it's a little thing one sees in their eyes or a facial expression or something. I don't know, I don't get it, I never have, probably never will. So to make sure they got it, I cover it again, and sometimes I might keep doing it until they make it obvious to me that they got it. Sometimes I won't stop until they say, "OK I got it!", or until they respond to it with a comment on it. That's my social cue, you've confirmed verbally that you heard what I said. I'm extremely uncomfortable taking it on faith that they understood what I said.
  1. Sometimes if the topic is very narrowly focused, once I cover it I don't know where else to go with the conversation, so I stick to what is safe and comfortable. The thing I know well, the thing I probably already said.

Beating It To Death
Sometimes as I'm discussing a topic of interest, I'll start going into excruciatingly fine layers of detail. This is common to a LOT of HFAs/Aspergers. Why do we do that? This is a little more complicated. It goes to a problem in understanding basic human nature. I see things in very fine detail, I see the connections between details and how they work all along a chain of understanding. But I don't know whether anybody else does. From experience I know that I think of details that most people don't focus on. Sometimes a detail will seem hugely important to me that seems trivial to everyone else or they don't see at all.

For example, if I order a tostada at Taco Bell I might specify that I want the sour cream applied directly on top of the beans and before they put on the lettuce and cheese. Ridiculous to most of you I know, but it's a big deal to me. If I order a pepsi and they fill it a couple millimeters below the fill line I get annoyed, I'll insist that they fill it the rest of the way. Most people wouldn't notice or care.

I guess I do that because I see things in black and white, either I got what I orderd or I didn't. It's real hard for me to deal with grey areas. Grey areas mean uncertainty. Autistics don't like uncertainty, we are comfortable in our routines, straying outside of those zones can be frightening or at least disconcerting.

Sometimes I will ask people to explain things in great detail and I am terribly annoyed when they gloss over something. Usually this serves me well (though it does irritate people) because I'm almost always right about such things. There is almost always a detail that gets overlooked that I was worried about. In this respect I find NTs terribly predictable. In my world it is a rare NT indeed who can do anything without screwing it up.

I think it's for this reason that you find so many Aspergers in the engineering disciplines. I'm a software engineer, I have to be able to think binarily. Black and white, it either is or it is not, no grey area. I have to say, there are an awful lot of people "like me" in the computer world. I don't think that's an accident.

So people get the sense that I don't trust them, and you know what, they are right. But it's not because I see them as nefarious, I just see them as NT and NT to me means imprecise by nature.

Now does all this mean that I am ultra-precise and perfect in all things I do. Not by a longshot. I sometimes lose sight of the big picture by focusing on details, or sometimes I focus on trivial details at the expense of more important ones. The way I think is more a reflection of interest than priorities. Again, I am most comfortable in an area where I have an interest.

So what differentiates me from someone at the moderate level of autism? Well, I can, with effort, function in NT society if I can stay in my comfort zones, and I can for brief periods of time fit in to less comfortable zones at the expense of a lot of mental effort. This effort however is exhausting and comes at a price. I can't keep it up for very long. Basically, when I'm deliberatly fitting into a situation that I'm not programmed for, a gradual resentment level builds inside me. At some point I will melt down.

The biggest problem for me is that I look normal, I do my work well, and I can appear to act normal if not in a highly visible, high responsibility position. So sooner or later some a**hole wants to put me in a position of managerial responsibility. I am then trapped in a catch 22. If I demure, I'm "not being a team player", if I agree to do it, I am setting myself up for a catastrophe. Then the meltdown becomes inevitable and severe. Frustration builds to the point that I can no longer mask it. In such situations I usually end up quitting whatever job I'm in, or I get tossed out after I've annoyed enough higher level managers.

There is no support system for people like me. We really fall through the cracks. We tend to be too high functioning to receive (or want) the kind of supports designed for lower functioning individuals, but are unable to truly fit in to the NT world.

F.A.Q.
I get asked a lot of questions by parents of ASD kids and others. So what follows is a list that some may find helpful.

Q: What is the difference between HFA and Aspergers syndrome, are you an HFA or an Asperger?
There is some debate about this and whether there should even be a distinction. The DSM IV defines the difference at least in part as being based on how language developed in early childhood. Generally, one is considerd an Asperger if they did not have a significant delay in their language development. A child who has not begun developing speech by age two is late. At two and a half it would definitely be considerd significantly late. In my case, my parents (at a distance of nearly fourty years) could not remember at what age I developed speech though they did say my speech development was unusual in that it was not gradual. I went from being non-verbal to fully speeched in a matter of days. This is not altogether uncommon for people on the autism spectrum. Beyond the initiation of speech, most people don't consider that there is a significant if any difference between high functioning autism and Aspergers syndrome. Beyond that, I'll leave the fine points of distinction to the "experts". In my view it's really the same condition with slightly different permutations, probably not worthy of having two distinct classifications.

Q: Why do these kids stare off into space, what is going on in their heads when they do this?

A: Well, in my case, I was fascinated by naturally occurring patterns. Sometimes I would see a spot on the wall or an interesting pattern which if I looked at it for a while would just seem to change. It's very seductive, I would almost feel myself pulled into it and to another world or dimension. I would be staring at it and just kind of trying to figure it out, work out what it is and then this pulling would start. It's rather hypnotic and a strange sense of peace and well being would come over me.

Q: Why do you rock?

A: The short answer is, it just makes me feel better, relieves stress. It helps to restore some equilibrium. We live in a world of frequent if not constant confusion and anxiety. The rocking helps us disconnect from that anxiety and calm ourselves.

Q: Why are you so socially awkward?

A: This is a biggie, for me it's two things. I see conversation not so much as method of socially connecting but rather as a vehicle for the transfer of pertinent information. This makes small talk extremely difficult for me. Once I've conveyed an idea, I don't have much reason for further comment. I don't really have anything else to say and no interest in hearing anything else on the topic unless it's of some salience. I don't see much value in discussing something that has no technical or specific value.

The second thing is the missing of social queues. Subtle social queues like little facial expressions or some aspect of how you communicate non-verbal information with your eyes completely escape me unless they are exaggurated. When it comes to facial communication if it's subtle, chances are I'll miss it. These social queues, are evidently more important than one might think. People might think I'm being dishonest or hiding something or just not interested when in reality, I'm just communicating the only way I know how.

Q: Why can't these kids (or adults) maintain eye contact?

A: This one is easy, it's because it holds no value for us. NTs evidently transfer a lot of unspoken things via eye contact, for some of us, we can't really see it. It's like looking into a shark's eyes or a camera lens. We just don't get any information that way and don't always know how to send information that way. And in fact, for me at least, it is very distracting. When I make eye contact, it's because I feel forced to do it, so I end up concentrating too much on the deliberate act of eye contact and miss half of what people are trying to tell me. It just does not come naturally for us.

Q: How did you "grow out" of Autism, is it possible for my child to grow out of it too?

A: OK, this is a BIG misconception. If you are on the autism spectrum, you will never "grow out" of it. It is who you are, just as you will not grow out of having two arms or having a big nose or whatever. What happens is that some of us who are sufficiently high functioning and least severe can learn adaptation strategies. Also, autism is a developmental disorder, meaning exactly that. We as human beings never stop developing. In some cases, we develop very slowly. For example, my senses of emotions have developed very slowly, to the point that I have some emotions now that I did not have 20 years ago. It took until I was in my 40's before I had developed any sense of empathy. It was impossible for me to share in someone's joy or sense their greif. I still struggle with it, but I do find now that I absolutley do empathize in a real sense with those who are suffering. When I was younger, I could only do so intellectually, today I do feel it. To that end, we learn how to do things intellectually that NTs do by instinct.

I observed a very interesting thing regarding my daughter's condition. We were watching Real Time with Bill Maher. Now here clearly was something that my daughter at age six could not possibly have understood the comedic implications of as Maher cracked jokes about political issues. However my daughter was practically howling with laughter. Why? Because she heard the audience laughing and realized the appropriate response was to laugh. She made an intellectual connection to a behavior that is instinctive for an NT. She is at this early age training herself to adapt. It's what we do for a lifetime.

Q: What is a savant, are you a savant? I've heard that Apergers/HFAs are really good with math are they all savants?

A: Autistic savants are relatively rare and usually pretty low functioning in most areas not related to their savantism. HFAs/Aspergers are not savants. We are often gifted in general areas such as math, rote memorization, or superior visualization skills, but we lack the deficits that savants usually have and our "gifts" are rarely as extreme as those of a savant. Many of our "gifts" come from perseveration over a topic of interest rather than any superhuman abilities.

Q: I've heard autistics think visually or in pictures, is this true?

A: It is true for some, but by no means for all. I personally do not think in pictures, and many Aspergers don't, but I have known some who do. They actually see their concepts visually, this works well for engineers who can see in three dimensions what a design should look like. Mozart, who many consider was probably on the autism spectrum, used to describe his process of writing a symphony as seeing it all at once, as if one were in a balloon above a parade. As you increase in altitude you can see the entire thing at once. That's pretty classic, but again it's not a gift we all have.

Q: When should I reveal to my child that they have autism?

A: This is an intensely personal decision that I could not make for anyone. However, I can offer the following. I did not find out about my own diagnosis until I was an adult in his my 40's. However, once past the initial shock, I found it to be one of the most liberating and cathartic experiences of my life. Suddenly it was as if a huge weight was lifted off my shoulders and a veil of understanding was lifted that had been separating me from the world. I deeply respect the need to protect our kids from having to deal with the knowledge that they have a deficit, but I must say in all candor that I really wish I had known about this before I reached adulthood. It would have saved me so much misery if only I had known why I didn't fit in. I would have had the ability to understand so many of the forces that gave me so much unnecessary misery.

My own daughter is only six years old and of course much too young to comprehend it, but I know that at some point she will realize she is somehow different and either divorce herself from all social activity or experience great misery as she hopelessly attempts to fit in to a social structure that she never will really belong to. I think when that begins to happen we will have to tell her, probably in her teen years. I believe that when we know who and what we are, we are much better prepared to deal with life and the challenges it throws at us.

Q: Who are some famous autistics?

Rare Footage of Bill Gates doing the classic Autistic Rocking

A: Among the living, Temple Grandin is a well known and well documented moderately autistic individual. She is a professor of Animal Science at Colorado State University and has written extensively about her life and experiences. Actress Daryl Hannah has also been formally diagnosed with autism as has musician Courtney Love. Other confirmed autistics include Dan Aykroyd, Gary Numan, Peter Tork (of the Monkees) Jazz Prodigy Matt Savage, Mathew Laborteaux, and Author Elisabeth Hughes.

Other famous people generally believed to be or have been somewhere on the Autism spectrum include:

  Bill Gates
  Isaac Newton
  Nikoal Tesla
  Thomas Jefferson
  Albert Einstein
  Bob Dylan
  Glen Gould
  Mozart
  Beethoven
  George Orwell
  Jonathen Swift
  Lewis Caroll
  Arthur Conan Doyle
  Immanuel Kant
  Van Gough
  Andy Warhol

Q: Is there a link between musical talent and Autism?

A: Well there certainly seems to be, looking at the lists of famous autistics above there certainly seems to be an over representation of musicians. I am a musician myself. A lot of people like music a lot, but I think what differentiates us on the spectrum is perhaps that there is a strong attraction to use it because we can use music to express ourselves, we feel through it. Since communication and expression are often problematic for us, there may be a natural inclination to music. Also as music is highly technical and even mathematical and requires a lot of detailed study, we who perseverate can get through it when others might not. Personally, I enjoy the niggling details of Baroque counterpoint and have studied it to the point that I can now write 4 part counterpoint without even using an instrument. All I need is a sheet of paper. It's better if I use a keyboard though. Also my daughter's music teacher says she has perfect pitch. A considerable rarity for a child of her age. Even Mozart did not have perfect pitch at that age, though it is said that he developed it by his teens. So perhaps there is a connection.

Originally posted to Phil In Denver on Tue Jul 28, 2009 at 05:25 AM PDT.

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Comment Preferences

  •  Typo (5+ / 0-)

    "social queues" - I think you mean "social cues".

    (I'm somewhat dyslexic myself.)

  •  Thank you for Sharing (9+ / 0-)

    Thi is an invaluable contribution that you have made. I will give this to a grandmother of an autistic/Asperger child.  With knowledge we all can cope with things so much better.

  •  Phil, this is a wonderful diary. (5+ / 0-)

    I'm bookmarking it, because after I rec'd it, I need to do more.  Thanks so much.

    Best wishes to your daughter, and to you.

    "The joy of activity is the activity itself, not some arbitrary goal which, if not achieved, steals the joy." ~John "the Penguin" Bingham

    by sheddhead on Tue Jul 28, 2009 at 05:49:33 AM PDT

  •  Both my kids have autism. (5+ / 0-)

    Not high functioning, though.  But it's funny how I still recognize a lot of the stuff you talk about in my kids.  It's a matter of degree, in some respects.

    (-9.62/-6.77) Democratic Socialism: Because evolution really is going somewhere.

    by revelwoodie on Tue Jul 28, 2009 at 05:58:54 AM PDT

    •  maybe not high functioning now (6+ / 0-)

      but you don't know what their developmental path will bring. My daughter would have been classified low/moderate functioning as a toddler; as a teen, she's high functioning.

      •  That's what we hope for. (4+ / 0-)
        Recommended by:
        elmo, neroden, codeman38, Cassandra Waites

        Was she non-verbal when she was younger?  When did you notice a change?

        (-9.62/-6.77) Democratic Socialism: Because evolution really is going somewhere.

        by revelwoodie on Tue Jul 28, 2009 at 07:43:21 AM PDT

        [ Parent ]

        •  hmm, let me see (5+ / 0-)

          She was almost four before her first words. She didn't use language communicatively at all until several years later. Her first conversation (in which she said something that was connected to/related to something I said) came around her eighth year. By that time, her echolalia had ended and she had stopped reversing pronouns. All this was gradual.

          While we didn't use any professional intervention, we worked pretty intensively at home in everyday living (because that is the context of real language, after all). I followed the philosophy of the Hanen Center:

          http://www.hanen.org/...

          My strategy was to focus on one thing at a time, and when that was fixed, move on to another thing, etc. Now, at 17, her speech is fine so we're working on other things.

          •  That is so great to hear. (2+ / 0-)
            Recommended by:
            elmo, codeman38

            I know I have to be realistic and not pin my hopes on that kind of progress, but just knowing that it's possible helps stave off the despair.  I can always say, "Hey, you never know..."

            (-9.62/-6.77) Democratic Socialism: Because evolution really is going somewhere.

            by revelwoodie on Tue Jul 28, 2009 at 08:45:18 AM PDT

            [ Parent ]

            •  what's kept me going all these years (0+ / 0-)

              I try not to look to far into the future. I just try to focus on that next, small step. All those small steps add up to progress over time, and now that I look back and see how far we've come, it feels good.

              And you really do never know. Professionals who look at a toddler and make predictions about what that individual will be able to do for the rest of their lives are no better than fortune tellers looking into a crystal ball.

  •  Thank you Phil (9+ / 0-)

    My son was diagnosed, after a series of petit mal seizured when he was two.  He has been through early intervention, a special needs pre-school, autism support in a public school setting, and is now in a private school program paid for by the school district.

    With all of that, at ten years of age, we would be considered to be "low-functioning".  Given that he has limited ability to communicate verbally, I'm not certain that he is aware of the fact that he is an autistic.  But we have never hidden that information from him.

    Our goal is that he be able, to the maximum degree possible, to be independent.  My concern is that, given my difficulty is discerning autie communicative cues, I may not know how and when to push him harder and faster.  I have gained a lot of insight from Grandin's work, especially Animals in Translation, and from Tito's descriptions of his inner life.  Do you have any suggestions of material worth reading to help me better discern my son's communicative cues?

    Ancora Impara--Michelangelo

    by aravir on Tue Jul 28, 2009 at 06:03:31 AM PDT

    •  Honestly I would be (7+ / 0-)

      out of my depth on this one. Most of what I have read has to do with high functioning autism and probably won't apply. Unfortunately I am terrible remembering titles and authors after a distance of years and can't make a recommendation at this moment, but if you email me at my profile address I'll look over some of my notes and see if there are some titles that you might find useful.

      "crush in it's birth the aristocracy of our monied corporations which dare already to challenge our government" -Thomas Jefferson

      by Phil In Denver on Tue Jul 28, 2009 at 06:18:06 AM PDT

      [ Parent ]

      •  Thanks again (6+ / 0-)

        I have sent you an e-mail.  I noted your addy.  My son is a fan of Bach, especially the Goldberg Variations.  I originally played him the Glenn Gould version.  Later, I tried a version which is played using the harpsichord, as originally intended.  He seems to not only like that version better, but seems to be concentrating even harder as he listens.

        Ancora Impara--Michelangelo

        by aravir on Tue Jul 28, 2009 at 06:23:30 AM PDT

        [ Parent ]

    •  I know with my own daughter (6+ / 0-)

      pushing of any kind is counterproductive. So I learned how to figure out what motivates her to learn what I think she needs to tackle. For example, I noticed she wasn't reading independently (she learned to read by taking turns reading aloud with me), so I gave her some books about birds (her favorite subject) but didn't read them with her. Pretty soon, she was reading to herself.

      •  I wonder if that's common. (4+ / 0-)

        Pushing of any kind is wildly counterproductive to me.

        Made me not only immune to peer pressure, but liable to deliberately react against it (a tendency I have to watch).

        Anyone else have this sort of negative reaction to pressure, immediately pushing back?  Is this yet another autism-spectrum trait?  :-/

        -5.63, -8.10. Learn about Duverger's Law.

        by neroden on Tue Jul 28, 2009 at 08:01:22 AM PDT

        [ Parent ]

        •  I think it's a kid thing... (2+ / 0-)
          Recommended by:
          Wee Mama, codeman38

          or a human thing: you have to find whatever motivates anybody.

          Evil is making the premedicated choice to be a dick -- Jason Stackhouse

          by Frankenoid on Tue Jul 28, 2009 at 08:29:10 AM PDT

          [ Parent ]

          •  I think that a lot of... (3+ / 0-)
            Recommended by:
            Wee Mama, codeman38, Cassandra Waites

            "autism-spectrum things" are simply human things.

            People don't like to be coerced. Especially kids.

            Presenting the NT as someone who happily accepts coercion really bothers me.

            Real Democrats don't abandon the middle class. --John Kerry

            by Lucy Montrose on Tue Jul 28, 2009 at 08:58:08 AM PDT

            [ Parent ]

            •  I didn't say happily (1+ / 0-)
              Recommended by:
              Cassandra Waites

              I swear I was the only person in middle school who was 100% resistant to peer pressure, because my natural reaction was to push back.  I didn't perceive it as pressure, I perceived it as hostility from crazy people.  The courses they gave us in resisting peer pressure were meaningless to me.

              There were plenty of people who didn't like the coercion one bit, but they felt it as coercion and it coerced them to a lesser or greater extent.  Me?  The more they pushed the more I pushed back.  I was more hostile to it the more it was suggested.

              My best friend who I have known forever is very much NT, and he resisted said pressure, but for me it wasn't resistance, it was instinctive counterreaction.

              (Made for a seriously miserable time being attacked that much, but hey, peer pressure in middle school was pressure to do stupid things, so I was right.  In high school I discovered that everyone started acting more like me, and started admiring me.  I hadn't changed.  Biggest ego boost ever.)

              Of course, I had to watch myself when I figured out that I reacted that way to pressure to do sensible things, too!

              So this particular negative reaction to social pressure is extremely unusual.  I was startled to hear of anyone with the same reaction, so I was wondering if it tended to correlate with the other weird attributes I have.  Or if this one's a "no, you're really, really unique, Nathanael".

              The only reason I find "Asperger's syndrome" useful as a name is that there is such a large list of different, seemingly unrelated things which tend to go together.That makes it validly a "syndrome" (not necessarily an illness or a disorder).    Many of which go together in me.

              -5.63, -8.10. Learn about Duverger's Law.

              by neroden on Tue Jul 28, 2009 at 05:18:43 PM PDT

              [ Parent ]

            •  there is a human spectrum (0+ / 0-)

              and we're all of us on it.

  •  A question for you.... (5+ / 0-)

    Thank you so very much for this very informative diary.

    I have a friend whose daughter has been diagnosed as having Asberger's syndrome.  The young lady is a young teen, very high functioning, but struggling with all the social elements of teen life, as you might imagine.

    My friend is unsure of what to do for her.  Does it make sense to you to see if there's some sort of occupational therapy that might help her intellectually "get" the social cues from her NT friends?  My friend is getting conflicting advice:  one relative who's a psychologist says that they should just "love her as she is" and let her develop at her own pace.  But others have talked about the real value of therapy to improve her social skill set.

    Your point of view would be most valuable...

    One Car, One House, One Wife...Obama '08

    by Exurban Mom on Tue Jul 28, 2009 at 06:04:10 AM PDT

    •  Does she know about her diagnosis (13+ / 0-)

      In this case, it's what I alluded to about my worries about my daughter. Teen years for aspie/auties can be very difficult and I am convinced that it is much easier to deal with if we know why it's so difficult.

      Here are two VERY important things to understand.

      1. Trying to shoehorn an autie into the NT world will never work. We are not NT and we never will be. Insisting that someone try to fit in is a life sentence for misery.
      1. Having said the above, it does not mean that there are some groups with which we will fit in. I can tell you that the some of the most fulfilling years of my life were those spent as part of the Washington DC music scene. I played the drums in a punk rock band and hung with other punks and hippies and such.

      They accepted me as I was and I never felt pressured to fit in with the Jock crowd or the homecoming king and queen popularity crowd. The subculture worked for me. I'm not recommending that specific culture for your situation, but I would recommend hooking up with people who share similar interests. People tend to be less judgemental when they are into the same things.

      "crush in it's birth the aristocracy of our monied corporations which dare already to challenge our government" -Thomas Jefferson

      by Phil In Denver on Tue Jul 28, 2009 at 06:13:45 AM PDT

      [ Parent ]

      •  I have a non-NT son (8+ / 0-)

        approaching his teen years.  Although he is comfortable, and frankly proud, of being different, he also wants to fit in some.

        Our focus is two fold: First we need to figure out and identify his "deficits" that have negative consequences.  For example, he knows that he misses social cues and that he does not naturally pick up on a lot of things going on around him that less bright neuro-typicals seem to pick up by osmosis.  To be fair we also work to recognize his traits that are huge benefits - handled correctly perseveration is one.

        The second step is figuring out how to address or ameliorate those deficits that cause him problems. He needs to actively force himself to notice what the other kids wear, where everyone sits at lunch, who does what at recess and then decide what he needs to do to fit in where he wants to.  Lots of kids are naturals at this and do it without thinking - kind of like how he memorizes stuff effortlessly. He needs to turn his mighty brain to noticing this type of social stuff and work at it like NTs need to work at memorizing the periodic table.

        Then we also work at giving him skills to interact with NTs.  He has a girlfriend so we talk about how girlfriends like it if you actually talk to them sometimes (texting is a godsend for him - much easier).  I regularly engage him in chit chat - though he'd avoid it if I let him - because it is how people get to know each other and interact and it is an important skill.  And he is getting better at it.  We also use strategies.  He doesn't really know how to chit-chat or how to just start talking to someone so the strategy of "ask questions then listen" helps him.

        We work at it.

        Give me government-run healthcare over Wall Street-run healthcare anyday...

        by trillian on Tue Jul 28, 2009 at 06:36:53 AM PDT

        [ Parent ]

        •  Please be careful (5+ / 0-)

          if your child is on the "spectrum" he may never truly fit in. By trying to force him to you may be setting him up for severe disappointment. For someone as high functioning as your son he may find his own way by associating with people who accept him as he is or who share similar interests.

          He may well adapt to a fair degree, as I have for instance, but if the focus and pressure is too much towards fitting in and he is unable to do so, it could set him up for a rather unplesant fall.

          "crush in it's birth the aristocracy of our monied corporations which dare already to challenge our government" -Thomas Jefferson

          by Phil In Denver on Tue Jul 28, 2009 at 06:51:40 AM PDT

          [ Parent ]

          •  If he finds social networks interesting (4+ / 0-)
            Recommended by:
            trillian, Wee Mama, Exurban Mom, miss SPED

            he may enjoy spending effort figuring them out.  I did.  (Romantic relationships were particularly hard to figure out, largely because most people were acting absolutely nuts about them.)

            But once he figures them out, he may decide that large portions of them are really no fun for him at all.  If so, he should certainly be encouraged to not have to deal with them, to the extent possible.

            His girlfriend may be able to be helpful if she really likes him for who he is; having a friend who can act as a translator is often a really good thing.

            -5.63, -8.10. Learn about Duverger's Law.

            by neroden on Tue Jul 28, 2009 at 07:02:03 AM PDT

            [ Parent ]

        •  Texting is a miracle technology. (4+ / 0-)
          Recommended by:
          Exurban Mom, neroden, Lashe, codeman38

          I'm dating an Aspie with auditory perception issues. Phones cut off frequencies he needs to understand speech easily. (Interestingly, Skype apparently doesn't cut out those frequencies.)

          Hoping and praying that the empty chairs and empty tables in Iran when all is said and done are as few as possible.

          by Cassandra Waites on Tue Jul 28, 2009 at 08:09:08 AM PDT

          [ Parent ]

        •  Texting vs. phone calls (1+ / 0-)
          Recommended by:
          Exurban Mom

          (texting is a godsend for him - much easier)

          Ohh yes. As yet another aspie, I definitely can associate with this.

          I honestly don't think my girlfriend and I would have kept in touch nearly as much had it not been for instant messaging and text messaging-- with my auditory processing issues, I'm constantly asking for repetition, or just smiling and nodding, when it comes to phone calls, which doesn't exactly make for a flowing conversation!

        •  Being aware is only the first step. (2+ / 0-)
          Recommended by:
          Exurban Mom, neroden

          He needs to actively force himself to notice what the other kids wear, where everyone sits at lunch, who does what at recess and then decide what he needs to do to fit in where he wants to.

          It's the deeds and actions to fit in that I've always struggled with.
          Of course I wasn't going to be popular in high school-- being interested in boys, makeup, etc. was a necessary condition of it. These deeds are how one cements social bonds with the popular girls, and I wasn't interested in doing them. I had better things to do.

          Lots of kids are naturals at this and do it without thinking - kind of like how he memorizes stuff effortlessly.

          IMO both NTs and ASDs look bad according to the model we look off of. The ASD looks socially awkward, but the NT looks like a creature of instinct, with too much focus on immediate surroundings and no ability to see the larger picture.

          More to the point, it paints a jaundiced picture of what it takes to be successful in relationships. Monkey-see monkey-do imitation? Sacrificing a large chunk of your emotional and intellectual potential so as to not make others uncomfortable?

          I have always seen the primal need for comfortability as getting in the way of truly satisfying relationships. You could spend your life just making others comfortable; you'd have the "good social skills" seal of approval but you'd miss out on a lot of what really makes relationships and emotions worthwhile. Plus, you're easy prey for prejudice, manipulation, and the herd mentality in general.

          And comfortability is the damned base of the Maslow pyramid of social needs. The very first necessary condition you must meet, is the same one that makes relationship-building such a chore, and can make yourself act patently un-imaginative and un-empathetic.

          Real Democrats don't abandon the middle class. --John Kerry

          by Lucy Montrose on Tue Jul 28, 2009 at 09:22:12 AM PDT

          [ Parent ]

          •  It really depends (3+ / 0-)

            I should have mentioned my spouse and I both fall on the spectrum ourselves - no surprise there.  We are incredibly lucky to have found each other and it took a long time.  The reality of our lives that is that we can't just associate with non typicals - we are both successful professionals and we have one very NT child.  

            We must go out to dinner with other couples, we must attend cocktail parties, we must have relationships with our co-workers and employees, we must attend family dinners, we must regularly associate with the other parents on the kids' various teams.  Given our druthers, none of these things interest us at all.  I'd rather have a root canal.  We also have zero interest in fashion, make up, haircuts etc.  But I have worked much harder to learn NT skills than my spouse has and it has paid off.  I don't do it to make others feel more comfortable, I do it because it is in my interest to look professional. I do it so that these social situations are less excruiating for me if I can fit in at least a little and I do it for my NT child who is acutely aware of all the social dynamics in a room.  I also do it because it has become a sort of challenge, like learning the customs in a foreign land. For my spouse, who has made less of an effort, social situations remain painful and awkward unless we are with someone who wants to discuss a topic that interests my spouse and can do it at my spouse's level - and how often does that happen?

            So we work at it - even simple things make a difference.  For years my spouse would never introduce me to co-workers at a party.  First because the idea just doesn't occur- the social cue that prompts such behavior is missed completely, and second because my spouse usually does not know the names of co-workers or employees, even those of long standing.  So we've worked out a convention, my spouse introduces me(after a loving pinch to the butt) knowing that I will immediately stick out my hand and say my name, in which case the person almost always responds to me with their name - problem solved.

            It is weird to realize that I have to think hard and have a strategy about how to handle such a common occurence, but I do and it does make a difference in the quality of our lives and I want my son to have the tools to do the same.  If he chooses not to use them, that will be his choice.  

            Give me government-run healthcare over Wall Street-run healthcare anyday...

            by trillian on Tue Jul 28, 2009 at 10:13:03 AM PDT

            [ Parent ]

    •  Temple Grandin has co-written a book (9+ / 0-)

      entitled The Unwritten Rules of Social Relationships.  It may be that the book will offer clues as to how to better discern the social cues NTs use.  Given that Grandin is a co-author, it is written with auties/Aspies in mind.

      This is not to say that she needs to conform, just that having a greater ability to discern cues might be useful to her.

      Ancora Impara--Michelangelo

      by aravir on Tue Jul 28, 2009 at 06:29:46 AM PDT

      [ Parent ]

    •  These two goals don't conflict (10+ / 0-)

      although they seem to.

      They should surely love her as she is.  That doesn't not preclude (in fact, it may help) in teaching her social skills.

      Let's look at NT (neurotypical) kids.  A baby is not capable of doing much.  Yet, we love our babies.  At the same time, we teach them.

      If our child is deaf, we learn sign language.

      Now, move this to the case of AS/HFA/NLD or whatever kids.  We are deaf, but to a set of things that NT people don't usually "get".  Can we improve? Surely.  But not the way NT people improve, any more than telling a deaf child to "listen harder" will work.

    •  Advice from another person with Asperger's (7+ / 0-)

      As a teen, her peers may be nuts, and if she doesn't want to deal with them, she shouldn't be forced to.  But if she wants to pick up social cues better, she should be assisted in learning how.

      She should also learn how to get her friends to state things openly.  This was my crucial and vital coping skill.  A friend who's willing to tell you things outright instead of giving meaningless 'cues' is like gold for someone like me with Asperger's.  

      It is also very possible to learn how to politely ask people to verbalize things, and how to politely tell them that you will not be even slightly offended if they say things explicitly (apparently neurotypical people sometimes get offended if they are explicitly told things which they already "got" ?!?! -- I find that insane).

      -5.63, -8.10. Learn about Duverger's Law.

      by neroden on Tue Jul 28, 2009 at 06:57:40 AM PDT

      [ Parent ]

      •  Why NTs get offended (7+ / 0-)

        (apparently neurotypical people sometimes get offended if they are explicitly told things which they already "got" ?!?! -- I find that insane).

        I can explain this, as the mother of a 10 year old with Asperger and as a woman who has--her entire life--been good friends with boys/men who exhibit Asperger characteristics.

        NTs view being explicitly told something that they already know as condescension from you.  In NT-world, by telling them the same thing in detail that they already know, you're communicating (inadvertently) that you think they aren't intelligent enough to have understood what you said the first time.

        Some NTs can brush it off, while others are very offended.  Unfortunately, the NTs who are offended are almost always the same NTs who won't TELL you "Hey, Neroden, I read the same manual and know that, so you don't need to go into detail anymore."  

        When I was in high school many of my male friends were what I would consider "Aspergers-ish"--I don't know if they were ever diagnosed (I'm 39 years old) but having gone through the process of diagnosis with my 10 year old son, I can retroactively view my high school friends' behaviors through the lens of Asperger and see a LOT of similarities.

        I am NT, though--but with a healthy appreciation for so many Asperger traits that I do not view as maladaptive or dysfunctional, but rather reasonable and fascinating.  

        I remember LOVING the fact that none of my male friends played "head games" with me, or bullied me or other people, or would even think to judge someone based on what they wore, what car they drove, where they lived, etc.

        On the other hand, it was very difficult to try to have any emotional depth to these relationships.  It took me years to realize that my friends felt deeply, but could not or chose not to discuss their feelings.  But they were very loyal, had wonderfully analytical minds, and were delightfully creative within their perseverations.

        •  NT's are always reading intentions (6+ / 0-)

          that aren't there. The whole social cue system is inefficient, cumbersome and error prone! The simplest and most effective way to find out what someone means is simply to ask.

          •  The problem is that some NTs DO put out (5+ / 0-)

            intentions non-verbally.  So an NT who meets another NT but doesn't try to read social intent into nonverbal signals puts herself at a disadvantage socially.

            An NT who meets someone with ASD doesn't automatically realize that they need to turn off the social intent detection and take what the person with ASD says at face value.

            And, of course, someone with ASD who doesn't understand the social cue system is at a complete disadvantage with an NT who overuses the social cue system.  Sometimes NTs are, too--there are varying gradations of the level of nonverbal cues given out by NTs, so one NT can be completely stymied by another NT!

            I know how frustrating it is--I've watched my 10 year old try to learn how to read nonverbal social cues.

            •  Personally I've given up on (6+ / 0-)

              trying to read social cues. I just don't get it, and at the age of 48, it's unlikely that I ever will. I just try to limit my face to face interaction to NTs as much as possible. Not a great strategy I know, but it keeps me out of trouble.

              "crush in it's birth the aristocracy of our monied corporations which dare already to challenge our government" -Thomas Jefferson

              by Phil In Denver on Tue Jul 28, 2009 at 07:45:30 AM PDT

              [ Parent ]

              •  What has helped me... (1+ / 0-)
                Recommended by:
                neroden

                Find the NTs with a purpose. Avoid the ones who are only interested in American Idol (unless, of course, you really have something to say about it, and sometimes I do).

                Getting politically involved has made me feel more like I don't have to force myself to swallow conversational junk food to make a social connection. That I can be making the most of my time, while I do it.

                Because a lot of the time, small talk feels like I'm wasting my time, like I could be somewhere else really making the most of a relationship. But I can't avoid small talk, so what do I do? Find a better quality of small talk.

                Real Democrats don't abandon the middle class. --John Kerry

                by Lucy Montrose on Tue Jul 28, 2009 at 12:42:39 PM PDT

                [ Parent ]

                •  I'm not sure I've ever dealt with (1+ / 0-)
                  Recommended by:
                  Lucy Montrose

                  people on a level other than talking about something I'm actually interested in.  As intently and seriously as possible.  Of course I'm surrounded by geeks and nerds of various sorts, which is a very helpful start.  I don't try to read subtle social cues, and I've gotten good at the gross ones (frustration, boredom, wants to change subject, please move further away, etc.)  And I suspect there are a fair number of other people with Aspergers in the surroundings I choose for myself, frankly.

                  -5.63, -8.10. Learn about Duverger's Law.

                  by neroden on Tue Jul 28, 2009 at 05:04:48 PM PDT

                  [ Parent ]

            •  Oh, that's the worst.... (6+ / 0-)

              An NT who meets someone with ASD doesn't automatically realize that they need to turn off the social intent detection and take what the person with ASD says at face value.

              I hate that.  It was the source of innumerable arguments with my fiancee until she understood what was going on.

              -5.63, -8.10. Learn about Duverger's Law.

              by neroden on Tue Jul 28, 2009 at 08:08:31 AM PDT

              [ Parent ]

              •  Gahh, yeah... (3+ / 0-)
                Recommended by:
                neroden, mbzoltan, Cassandra Waites

                Nothing like being told that you're being dishonest when you're being absolutely truthful and just happen to not be maintaining just the right amount of eye contact. Or that you're being sarcastic, when making a truthful statement, because you happened to say it with a slightly off-kilter tone of voice.

                Gaaahhh!

            •  And that makes things even more complicated... (4+ / 0-)

              You can't always tell in real time the difference between an NT who's not using their social cue system and an ASD who doesn't understand the social cue system.

              Sometimes NTs are, too--there are varying gradations of the level of nonverbal cues given out by NTs, so one NT can be completely stymied by another NT!

              And that's exactly why it's dangerous to classify the facility at correctly reading nonverbal cues as a black-or-white, or a strictly instinctual thing. It takes humanity out of the equation, and it moralizes/pathologizes what used to be thought of as a healthy human difference. Plus, it ignores the fact that instinct, to reach its highest potential, must be refined by instruction, thought and feeling.

              This black-or-white thinking has IMO only one advantage: speed. And our culture has made a good chunk of our population too stressed-out and time-strapped to have time or energy for anything but the quick decision. No matter what studies have said that people are more satisfied with gut-level decisions; they still have consequences, which can be devastating, emotionally. No one likes to feel like they've not been given due process, and that's exactly what's taken away in a snap decision.

              The more I look at it, the more I just throw my hands up and go, "Enough with the labels! We're all human beings with differences. The best thing we can do is listen to each other and make friends with each other!"

              Real Democrats don't abandon the middle class. --John Kerry

              by Lucy Montrose on Tue Jul 28, 2009 at 09:46:47 AM PDT

              [ Parent ]

              •  YES! Exactly! (2+ / 0-)
                Recommended by:
                neroden, Lucy Montrose

                So what do you really mean?  

                (Joking!  Joking!  :) )

                •  Good one! (3+ / 0-)
                  Recommended by:
                  neroden, mbzoltan, Cassandra Waites

                  Remember this?
                  Good experiment there on DH's part.

                  The whole point of really listening to someone is making sure you really understand them, and that means making sure you've as much of the story as possible first. How many articles and opinion pieces have I read through to the end, and found out that their meaning was different than I thought I'd figured from a cursory glance?

                  Believe it or not, women's magazine covers have been instrumental in this for me. I'd see a Woman's Day with some eye-grabbing headline: "New Technology To Keep Your Kids Safe", and I'd think, "Oh * groan * more about putting GPS in your kids' cellphones to keep tabs on them!" ... and I'd actually read the article and it turned out, it was about using friend controls on MySpace, something very pro-privacy.  

                  Real Democrats don't abandon the middle class. --John Kerry

                  by Lucy Montrose on Tue Jul 28, 2009 at 10:17:59 AM PDT

                  [ Parent ]

          •  So being able to*correctly* guess an intention... (2+ / 0-)
            Recommended by:
            neroden, codeman38

            ... seems to be a pretty lousy way of differentiating ASDs from NTs.

            Better yet, why differentiate at all? Just accept that putting ourselves in other people's shoes is a struggle for us all, and work to bridge that gap. It would save a lot of time, heartache, and constant second-guessing of oneself.

            Real Democrats don't abandon the middle class. --John Kerry

            by Lucy Montrose on Tue Jul 28, 2009 at 12:26:59 PM PDT

            [ Parent ]

            •  Correlation is why. (2+ / 0-)
              Recommended by:
              codeman38, Lucy Montrose

              So my mother spotted my social skill problems early and got me into a very suitable school.  Fine.  My reactions to taste, sound, and sight happened independently and were dealt with independently.  Fine.  My reaction to peer pressure was discovered later and was useful.  Fine.

              I later ran into more serious problems, relating to generating daily habits.  If I'd known that there was a whole correlated cluster of things which go together like this (Asperger's Syndrome), I could have looked up everything I might have higher odds of having trouble with later, and started working on them in advance.  And looked up how other people with similar combinations of issues have handled the problems.

              If every one of the seemingly unrelated issues is totally separate, you see, that's not helpful.  Unfortunately, without the Asperger's name (or, to be fair, the things written by people just in the last few years) looking up the methods for how other people dealt with each of my individual problems or issues was often a bust, because whatever techinque they used simply did not work due to one of my other "atypical" issues.

              Does that make sense to you?  The correlation of seemingly unrelated symptoms is the reason it's a useful name.

              -5.63, -8.10. Learn about Duverger's Law.

              by neroden on Tue Jul 28, 2009 at 05:25:27 PM PDT

              [ Parent ]

      •  Finding friends who are willing (2+ / 0-)
        Recommended by:
        Exurban Mom, Cassandra Waites

        to accept and work with the aspie can be incredibly helpful. Unfortunately-- and I say this from personal experience-- it can also be incredibly difficult...

        This, more than anything, is the reason why I didn't have much of a social network at all in high school, but had a very thriving one in college: simply put, there were more geeky types who accepted me for who I was, and who were willing to hang out and just let everyone be themselves, rather than just looking askance at me.

    •  our HFA son (9+ / 0-)

      is now 13, and going into the 8th grade.

      when he was first going into the middle school years, we had him re-evaluated (his original diagnosis/evaluation was done at 5) so as to determine his strengths and weaknesses, and enrolled him in classes to learn how to reduce/control his considerable anxiety (social and otherwise) and to learn some of those social behaviors.

      This also was when we discussed with him his autism diagnosis.  It seemed opportune.  How we put it was "everyone has differences -- some are good at sports; some at drawing; some make friends easily while others have a harder time.  When a group of people are different in a similar way, that way of being different gets a name.  Your brother's way of being different is called ADHD -- that's why he jumps and dances around a lot and talks too loud.  Your way of being different is called autism..."  And from there we talked about the central way that all people with autism are different, and the other things that only some people with autism deal with.

      But one of the most helpful things for him to know was that some of his difficulties were not because of autism, but from being 12 or 13 -- that everybody in their teenage years has difficulties as they change evolve from little kids into being adults.  Knowing that even those kids who seem the most confident also have discomfort and insecurities -- that he was "normal" in that manner, even if it was expressed a little differently with him, gave him the ability to overcome at least some of his uncertainties.

      Evil is making the premedicated choice to be a dick -- Jason Stackhouse

      by Frankenoid on Tue Jul 28, 2009 at 07:00:20 AM PDT

      [ Parent ]

    •  A correction... (1+ / 0-)
      Recommended by:
      miss SPED

      I was not of course suggesting they shouldn't love their child as she is....I was, rather, contrasting two approaches, one very hands-off, one more aggressive in treatment.

      One Car, One House, One Wife...Obama '08

      by Exurban Mom on Tue Jul 28, 2009 at 07:14:00 AM PDT

      [ Parent ]

      •  If she's articulate and clearheaded (2+ / 0-)
        Recommended by:
        elmo, Exurban Mom

        They should ask HER what she wants.  It really comes down to that.

        I didn't always make the right decisions, but my parents always gave me choices when my life was in the balance, after explaining my options to me.  So I have never been resentful.

        -5.63, -8.10. Learn about Duverger's Law.

        by neroden on Tue Jul 28, 2009 at 07:23:08 AM PDT

        [ Parent ]

        •  and even if she isn't (1+ / 0-)
          Recommended by:
          Exurban Mom

          articulate and clearheaded. It's her life.

          •  Yeah, what I meant was (1+ / 0-)
            Recommended by:
            Exurban Mom

            if she isn't articulate it may be a lot harder to for her to say what she wants, or if not clearheaded it may be very hard for her to decide what she wants, and her parents may be stuck deciding for her until she makes up her mind and makes it known.  If she does, they should go along with it.

            I phrased it badly, because they should still ASK regardless.  Thanks for pointing me to make the correction.

            -5.63, -8.10. Learn about Duverger's Law.

            by neroden on Tue Jul 28, 2009 at 07:59:11 AM PDT

            [ Parent ]

    •  Thanks so much to everyone (1+ / 0-)
      Recommended by:
      Lucy Montrose

      Thanks so much for all of the helpful advice.

      It's painful to watch this struggle from the outside, and I'm grateful to get information I can use when I interact with her.

      One Car, One House, One Wife...Obama '08

      by Exurban Mom on Tue Jul 28, 2009 at 09:50:33 AM PDT

      [ Parent ]

  •  Very insightful (3+ / 0-)
    Recommended by:
    TiaRachel, codeman38, miss SPED

    There is so much out there now about autism, mostly dubious.  This information is right on.  I am a professional in the mental health field and have a sixteen-year-old son with ADHD.  (His brother was just diagnosed with ADHD also.)
    Thank you for such a wonderful diary.  I plan to copy it and read it more closely when I have the time.  The best of luck to you and your daughter.

    One cannot deny the humanity of another without diminishing one's own. James Baldwin

    by CarolynC967 on Tue Jul 28, 2009 at 06:06:11 AM PDT

  •  This is so helpful (6+ / 0-)

    I know someone who, in their mid-forties, was diagnosed with Aspergers and described that same feeling of relief and liberation, and joy that finally there was someone who understood them.  Thank you for writing this, it has made me better understand someone I care about, and given me lots to think about.  Good luck to you and your daughter.

    I was just too stubborn to ever be governed by enforced insanity, Someone had to reach for the risin' star, I guess it was up to me. -Bob Dylan

    by SharaiP on Tue Jul 28, 2009 at 06:11:46 AM PDT

  •  Thanks for this. I have NLD (11+ / 0-)

    that is, nonverbal learning disabilities, and have written about it in a diary I called on being weird.

    •  Yes, I saw that one (2+ / 0-)
      Recommended by:
      Wee Mama, plf515

      last time you posted it. Question, does this condition mean you can write but not speak? Or is it a developmental issue which one eventually overcomes?

      "crush in it's birth the aristocracy of our monied corporations which dare already to challenge our government" -Thomas Jefferson

      by Phil In Denver on Tue Jul 28, 2009 at 06:31:15 AM PDT

      [ Parent ]

    •  A question about nonverbal cues (5+ / 0-)

      Figuring them out correctly is key to correctly guessing the other person's emotions. But is it realistic to expect somebody to correctly guess what someone is feeling just by looking at nonverbals alone... particularly a child?

      As a youngster, I would narrow down the emotion to 2 or 3 possibilities. It was, and it still is, a lot tougher to get to the one. And keep in mind that we can feel several different emotions at once...

      It seems as if we're expecting our 10 year olds to have been nonverbal reading ability than a lot of adults do! And at the same time, MANY adults-- "normal", socially connected ones too-- readily acknowledge how hard in can be to put yourself in someone else's shoes.

      What Phil said: the NT instinctively picks up on the right social behavior. We have made imitation and following peer pressure a key marker to whether someone is normal.

      Real Democrats don't abandon the middle class. --John Kerry

      by Lucy Montrose on Tue Jul 28, 2009 at 07:48:56 AM PDT

      [ Parent ]

      •  I don't think it's realistic. (1+ / 0-)
        Recommended by:
        Wee Mama

        I was taught to ask.  And my friends were taught to answer.  :-)

        -5.63, -8.10. Learn about Duverger's Law.

        by neroden on Tue Jul 28, 2009 at 08:04:07 AM PDT

        [ Parent ]

        •  Asking for one true interpretation... (3+ / 0-)

          ... of a nonverbal cue is itself an "autistic" way of looking at people. Either black or white, either you have empathy or you don't, the right "cues" or you don't...

          There can be more than one possibility in an isolated nonverbal. You have to look at the person's entire body, a mixture of different nonverbals, to get closer to accuracy. And even then, you may still miss the mark unless you hear their voice.

          And that doesn't even factor frustration and conflicting emotional needs into the mix. The nonverbal cues all around you may be telling you, "I don't want to be your friend"; but if this is your main or only social group, you want friends, and your desire to have friends is likely going to override the need to abide by the social cues around you. Ergo, you're going to act against those cues, and look "inappropriate".

          Real Democrats don't abandon the middle class. --John Kerry

          by Lucy Montrose on Tue Jul 28, 2009 at 08:21:23 AM PDT

          [ Parent ]

          •  Well, you did ask (0+ / 0-)

            "is it realistic to expect somebody to correctly guess what someone is feeling just by looking at nonverbals alone... "

            So I was saying "No, it's not realistic".  If it doesn't matter whether I get it exactly right, I don't ask, but if it does, I do.

            -5.63, -8.10. Learn about Duverger's Law.

            by neroden on Tue Jul 28, 2009 at 04:45:32 PM PDT

            [ Parent ]

            •  And my best friend (0+ / 0-)

              who does pick up emotions and social cues subconsciously, will say outright that one of the things he really appreciates about me is that he can talk, on a pure 'text' level, with me, without having to focus on subtext.  He finds this a relief and finds that it eliminates a lot of confusion and mistakes, and he wishes more people were blunt and straightforward.  

              So I think it's fair to say that expecting people to pick these things up isn't reasonable for anyone.  Despite this, people do expect it.  :-P

              -5.63, -8.10. Learn about Duverger's Law.

              by neroden on Tue Jul 28, 2009 at 05:28:36 PM PDT

              [ Parent ]

      •  Most NT children do seem to be able (0+ / 0-)

        to do this.

        •  asdf (1+ / 0-)
          Recommended by:
          Cassandra Waites

          Really?

          Automatically sense what others are feeling? Correctly? Without asking?

          Or are we just expecting kids to do it more?

          Real Democrats don't abandon the middle class. --John Kerry

          by Lucy Montrose on Tue Jul 28, 2009 at 08:28:26 AM PDT

          [ Parent ]

          •  My 7 year old NT son does this pretty (0+ / 0-)

            well.

            Of course, no one is born knowing this, but NT kids
            do seem able to do it.

            •  I think he might be simply... (0+ / 0-)

              ... better at doing it than other people. In which case, he has better social/empathetic abilities than an average NT.

              It's the "correctly" that gets me-- not the "sensing". You can't do the "correctly" without at least some of being taught to recognize and name emotions.

              His abilities may also point to your skill, as a parent, in getting him to identify emotions and what their corresponding nonverbals are.

              No, may parents didn't do the best job of that. I've been highly emotional all my life, and that disconcerted both of them-- they spent more time trying to get my feelings under control than sitting down with me to try to get me to understand and use them. Which, incidentally, would've better succeeded in calming me down.

              Real Democrats don't abandon the middle class. --John Kerry

              by Lucy Montrose on Tue Jul 28, 2009 at 09:30:55 AM PDT

              [ Parent ]

              •  Well, whatever it is, it isn't my skill (0+ / 0-)

                since I am terrible at this.

                I am amazed that people (kids or not) can do this, but they do seem to be able to.

                •  And that's why I think the current approach... (1+ / 0-)
                  Recommended by:
                  codeman38

                  ... to understanding both ASDs and NTs is precisely the wrong way.

                  The objective is to have more satisfying relationships, right? The objective is to better understand each other, right?

                  Classifying people as different down to their neurologicals is off the mark. Besides pathologizing differences, it doesn't even focus enough on the real issue: our individual communication styles, conflicting needs, and different definitions of the same actions and qualities.

                  A wife may feel she's being supportive because she hugs, makes love to, and is a confidante for her husband; but he may have a different definition of supportive. He may not feel his wife is truly supportive unless she quits her job and has children (if she doesn't have any).

                  Just like the Gates arrest: Gates and Crowley had different definitions of "tumultuous". Which one is right? And too often, in our everyday interactions, the one that turns out "right" is the one belonging to the person with more power and authority. Which isn't right.

                  This NT and ASD classifying business doesn't even come close to addressing power imbalances, which account for the majority of human conflict. And it certainly doesn't teach us to have satisfying relationships through our human differences.

                  Real Democrats don't abandon the middle class. --John Kerry

                  by Lucy Montrose on Tue Jul 28, 2009 at 10:03:44 AM PDT

                  [ Parent ]

                  •  Or similarly... (2+ / 0-)
                    Recommended by:
                    Cassandra Waites, Lucy Montrose
                    A wife may feel she's being supportive because she hugs, makes love to, and is a confidante for her husband; but he may have a different definition of supportive. He may not feel his wife is truly supportive unless she quits her job and has children (if she doesn't have any).

                    Or an aspie may think she's being perfectly supportive by talking things through, but her significant other may expect physical contact. Or the aspie may be physically cuddly, while the NT expects the words "I love you" to go with it.

                    I've seen this sort of dynamic repeatedly in interactions between NT parents and autistic kids: the child clearly trying to show affection, while the parent doesn't notice the affection because it's not in the form they expect.

                    •  asdf (0+ / 0-)

                      These are different definitions of what's important to each of us-- NOT indications of one's neurological state.

                      We have pathologized differences in communication style, for the sake of simplicity and quick decision making, which our society keeps telling us is good for our neurological happiness.

                      Sounds like the NT parent in your scenario is pretty tone-deaf themselves! They can conceive of only one way, or a narrow repertoire of ways, of showing affection. And I thought that lack of range of emotional expression was something only auties/aspies did... [/sarcasm]

                      The whole thing is a crock, designed to prevent normal engagement of human differences, and prevent questioning of our increasingly coercive and intrusive society. Those with AS kids are going to get mad at me here, but I don't think they'd argue that attempting to put a stamp on a person's neurology is going to do nothing to address our real problems, or address the glitches and bumps inherent in ALL relationships.

                      Real Democrats don't abandon the middle class. --John Kerry

                      by Lucy Montrose on Tue Jul 28, 2009 at 11:20:56 AM PDT

                      [ Parent ]

                      •  Have you heard of the social theory of disability (3+ / 0-)
                        Recommended by:
                        wmc418, codeman38, Lucy Montrose

                        ....it sort of explains why some of us are talking in the terms we are.  I think several of us would refuse the terms "disease" or "treatment" and would say that many "neurotypical" people have things they are unable to do (they can't hyperfocus?  they can't concentrate well enough to go through a complex math proof or accounting problem perfectly?  they can't write computer code accurately first time?  they can't say exactly what they mean or draft contracts or legislation carefully?) which in the right social context would become real disabilities.

                        -5.63, -8.10. Learn about Duverger's Law.

                        by neroden on Tue Jul 28, 2009 at 04:58:36 PM PDT

                        [ Parent ]

                  •  And on power imbalances... (2+ / 0-)
                    Recommended by:
                    Cassandra Waites, Lucy Montrose
                    And too often, in our everyday interactions, the one that turns out "right" is the one belonging to the person with more power and authority. Which isn't  right.

                    One of my aspie blog-friends has started a wonderful post about that issue with respect to autistics and NTs:

                    Neurotypical Privilege: A Working Document

                    This should be interesting food for thought for everyone in this thread...

                    •  this really jumped out at me: (0+ / 0-)

                      My deficits are not considered deficits at all. Instead, they are considered universal faults in human cognition (even if they are not universal). And a good deal of effort is undertaken by my entire society to compensate for those deficits.

                      That entire link made me cry.
                      Especially where it invalidates the entire emotional experience of those unlucky enough to be diagnosed ASD. The OP said you never grow out of it? Well, with attitudes like those prevailing, of course not. It's a real black mark on your soul.

                      It's a cultural construct, a lot more than a neurological one.

                      This seals it for me that this isn't about being an aspie or an NT. It's something that ALL of us would do well to remember.

                      Making the human condition something pathological does not make you socially "all right". On the contrary: it makes you a mind-fucking asshole.

                      Real Democrats don't abandon the middle class. --John Kerry

                      by Lucy Montrose on Tue Jul 28, 2009 at 11:30:16 AM PDT

                      [ Parent ]

              •  Oh, people definitely learn it. (1+ / 0-)
                Recommended by:
                Lucy Montrose

                I am certain that kids in preschool were worse at picking up other people's emotions accurately than kids in 3rd grade, who were worse than those in 5th grade, et cetera.

                The fact that it kind of goes subconscious really early in a lot of people, and that they have pretty high accuracy, is what makes it like a 'sixth sense' to those of us who have to study and analyze consciously and carefully and are not that great at it even so.

                I know people who really do absorb whatever emotions they see "floating" in the room on other people, without even thinking about it.  That does not seem to happen to me.

                I think that's why this is accurately described as a learning disability.  When some people just sort of "learn it naturally", and some of us have to practice hard and think it through, we have a disability in learning this.  I spent a fair amount of time being explicitly taught and studying this stuff (and I was interested in it to start with), so I'm actually pretty good at it, but it's not subconscious to me, it was slowly learned.

                -5.63, -8.10. Learn about Duverger's Law.

                by neroden on Tue Jul 28, 2009 at 04:51:26 PM PDT

                [ Parent ]

  •  Lists of famous people .... (4+ / 0-)
    Recommended by:
    elmo, TiaRachel, terrypinder, Greasy Grant

    Fantastic diary, but I have two problems with lists of famous people believed to have NAME CONDITION HERE.

    First: To diagnose someone with HFA, or autism, or AS, or NLD or what-have-you requires extensive testing by a knowledgeable person.  It is possible, sometimes, to strongly suspect that someone (including one's self) knows very well; it is not possible, nor useful, I think, to diagnose people without this extensive knowledge.

    Second: It feeds into the "XXXX had XXXX, you have XXX why aren't you like XXX?"  e.g. "Bill Gates is autistic, why aren't you more like him?"  This is one of the things not to say to LD people (or their parents).

    •  Reading Is Fundamental pfl (1+ / 0-)
      Recommended by:
      elmo

      At no time did I diagnose anyone famous or otherwise. I said these famous people are believed to be autistic. I made no assertion that they are in fact on the spectrum.

      "crush in it's birth the aristocracy of our monied corporations which dare already to challenge our government" -Thomas Jefferson

      by Phil In Denver on Tue Jul 28, 2009 at 06:34:03 AM PDT

      [ Parent ]

    •  I disagree with your second point (4+ / 0-)

      We live in a world where many people (I have observed as the parent of an autie)objectify children who are LD.  In other words they think of them in terms of "what" rather than "who".  In that context, I think it is important to offer a humanizing counterbalance to that attitude.  A list of famous people is a quick jolt to those who don't even know what they're doing.

      Ancora Impara--Michelangelo

      by aravir on Tue Jul 28, 2009 at 06:39:10 AM PDT

      [ Parent ]

    •  I agree (5+ / 0-)
      Recommended by:
      elmo, neroden, plf515, max stirner, codeman38

      I do think there is a huge tendency to stick historical figures into categories (mental, physical, emotional) on very slim evidence.

      "Neuro-typical" is not a single point either, but a very wide range of physical responses (those flashes in the brain) and behavior.  It is also fashioned by the broader society (someone who is rather pessimistic might fit in very well in a culture other than the US, where relentless optimism is expected).

      This society floods us with thousands of cues, alternatives, contradictory messages.  I don't think very many people are navigating it well, because it has developed so that people find themselves in many difficult, no-win situations.

      Which is neither here nor there regarding this diary, but just to remark that part of the goal is to bend society to fit oneself - it is no failure to limit participation in crazy-making activities or situations (and to explicitly recognize to oneself that something like the high school environment is highly artificial and often damaging).

    •  I wondered what the evidence was (1+ / 0-)
      Recommended by:
      Wee Mama

      with respect to Kant. Was it just that the neighbors could set their watches based on the time he took his daily stroll?

  •  I completely appreciate adults who share this (10+ / 0-)

    My son falls somewhere on the autism spectrum.  He is in special ed -- he's comfortable there around "kids like him" as he says.  Doesn't test well at all.  Really needs a lot of attention from teachers to keep him on task.  I am very concerned about what happens to him after he's finished with his primary education.  It's a constant worry, actually.

    I have never been evaluated for or diagnosed with an autism spectrum disorder, but as I read this article I found myself rocking back and forth in my chair, I struggle with social cues, and I can tend to perseverate over certain issues.  When I was pregnant, for example, I became a walking encyclopedia on pregnancy.  All my mom has ever told me about my IQ testing is that it's high.

    Son's advisors at school have told me there's a wide range of ASD, from the non verbal to Asberger's, and he definitely falls somewhere on the spectrum.  I really like reading the diaries like yours, Phil.  You give me hope that after his school career is over, my son may be able to find his own way around.

  •  A joke (15+ / 0-)

    A guy is flying in a hot air balloon, and he's lost. He lowers himself over a field and calls to a guy "Can you tell me where I am and where
    I'm headed?"

    "Sure. You're at 41 degrees 2 minutes and 14 seconds North, 144 degrees 4 minute and 19 seconds East; you're at an altitude of 762 meters above sea level, and right now you're hovering, but you were on a vector of 234 degrees at 12 meters per second"

    "Amazing! Thanks! By the way, do you have Asperger's Syndrome?"

    "I do! How did you know that?"

    "Because everything you said is true, it's much more detail than I need, and you told me in a way that's no use to me at all."

    "Huh. Are you a clinical psychologist?"

    "I am, but how the heck did you know that??"

    "You don't know where you are. You don't know where you're going. You got where you are by blowing hot air. You put labels on people after asking a few questions, and you're in exactly the same spot you were 5 minutes ago, but now, somehow, it's my fault!

  •  lol, makes me laugh at myself (4+ / 0-)

    not diagnosed but I'm in the mix. My biggest struggles are with executive function and relating to others. I finally found WrongPlanet about two years ago and everything about me started to make sense. I don't do the rocking or the rote memorization but I do make the voluntary repetitive gestures and sounds, I look away at handshakes unless I really focus. Writing paper for grad schools has been a huge struggle due to problems with maintaining focus. I usually get around this by intuitive leaps but sometimes peoople want you to "show the work". I have great friendships because I've worked hard at it. I would say I feel all the emotions a neurotypical feels, just not in real time. No ability with music though. I think in 20 years or so they will tease out quite a few different types of Aspergers and Autism.

    Was it over when the Germans bombed Pearl Harbor? No! Its not over till we say its over.

    by Elvis meets Nixon on Tue Jul 28, 2009 at 06:37:52 AM PDT

    •  I think the trend is more towards consolidation (6+ / 0-)

      than further segmentation. Seems like Aspies and hf Auties and PDDNOSs are being lumped into just ASD, which in my view is appropriate. It's all one condition with many faces. The rest is just labelling.

      "crush in it's birth the aristocracy of our monied corporations which dare already to challenge our government" -Thomas Jefferson

      by Phil In Denver on Tue Jul 28, 2009 at 06:41:14 AM PDT

      [ Parent ]

      •  It really isn't the same though.... (6+ / 0-)

        The thing is, it's a cluster of related symptoms.  But the treatment or help we need depends critically on which symptoms we have.  And some symptoms can be missing entirely, not just present in differing amounts; for instance, I'm absolutely dreadful at rote memorization, hate it.

        -5.63, -8.10. Learn about Duverger's Law.

        by neroden on Tue Jul 28, 2009 at 07:10:48 AM PDT

        [ Parent ]

        •  this is what I was trying to say (5+ / 0-)

          I was a flighty dreamy kid who consistently underperformed on exams (still do) but could talk to adults about books like Gulag Archipelago that I was reading as a young teen.  

          Was it over when the Germans bombed Pearl Harbor? No! Its not over till we say its over.

          by Elvis meets Nixon on Tue Jul 28, 2009 at 07:35:18 AM PDT

          [ Parent ]

          •  Hmm... (0+ / 0-)

            I was a flighty dreamy kid who consistently underperformed on exams (still do) but could talk to adults about books like Gulag Archipelago that I was reading as a young teen.

             

            ...is this considered weird? Or non-NT? 'Cause I totally did this kind of thing and it was chalked up to being "smart, but daydreamy."

            •  I think it's a mistake... (0+ / 0-)

              ... to call any kid who's not NT an ASD. Because that would be pathologizing human differences... no to mention sending a very hopeless message about harmony and working as a team. Harmony is not everybody thinking and feeling alike, but of putting their individual selves together to form a common project.

              The problem is, they're got neuro studies to back them up. Many studies have shown that rapport comes from similarity. The official portrait of the NT elevates to high virtue the staying within the bounds of human nature and not trying to make better choices than instinct allows.

              To which I say, in my non-NT but still-not-ASD way: "Why does it have to be that way?"

              Real Democrats don't abandon the middle class. --John Kerry

              by Lucy Montrose on Tue Jul 28, 2009 at 08:38:40 AM PDT

              [ Parent ]

    •  It's really interesting to see the variations (3+ / 0-)

      I do the rocking and the voluntary repetitive gestures.  But I'm dreadful with rote memorization, really awful; even though I do have the same tendency to want to do it, my actual ability to is much worse than typical.

      -5.63, -8.10. Learn about Duverger's Law.

      by neroden on Tue Jul 28, 2009 at 07:09:09 AM PDT

      [ Parent ]

      •  my memorization ability its on its own (4+ / 0-)

        I remember (automatically) pointless things, obscure details, never any thing I really need and never as part of a system. I think that points to the underlying challenge of my life and that is difficulty in seeing how things relate to each other. I do have what I think of as a "random-connection-generator" which allows for intuitive leaps that helps me compensate.

        Was it over when the Germans bombed Pearl Harbor? No! Its not over till we say its over.

        by Elvis meets Nixon on Tue Jul 28, 2009 at 07:31:39 AM PDT

        [ Parent ]

        •  "random connection generator" - yes! (5+ / 0-)

          I have a touch of that (ability to string seemingly trivial bits of information together to create a cohesive whole or a connection that forms a pattern, or at least part of one); however I am lucky enough that I'm also able to then apply it to the bigger picture.

          This used to drive my teachers nuts, because it allowed me to B.S. my way through assignments and appear as if I'd put some real work into something, when in fact it was two random synapses firing and I just happened to be able to put them together fairly quickly in a way that didn't stretch credibility too much. What I was really doing was compensating for my perfectionism and procrastination.

        •  Oh, I've got that! (4+ / 0-)

          I remember (automatically) pointless things, obscure details, never any thing I really need

          My brain does systematize, but that's unrelated.... I seem to be able to keep generalizations but not the details which led to them.  :-P

          -5.63, -8.10. Learn about Duverger's Law.

          by neroden on Tue Jul 28, 2009 at 07:55:11 AM PDT

          [ Parent ]

      •  I can pick up the oddest trivia and keep it (3+ / 0-)

        in my head forever, but heaven forbid anyone hand me a piece of paper and say "memorize this".

        Hoping and praying that the empty chairs and empty tables in Iran when all is said and done are as few as possible.

        by Cassandra Waites on Tue Jul 28, 2009 at 08:22:25 AM PDT

        [ Parent ]

  •  I just finished reading the book (2+ / 0-)
    Recommended by:
    Vacationland, FarWestGirl

    "Second Opinion" by Michael Palmer.  It's a novel, the main character has Aspergers.  Til this I knew nothing about it.  A fascinating and fun read.

  •  What a fascinating perspective on this! (4+ / 0-)

    I'm not 100% NT myself (mild dyscalculia (numbers flip orientation and order sometimes), but despite this, I've got the spacial sense and ability to spot patterns that has in the past allowed me to work as a data analyst - I just have to double- and triple-check the work to make sure nothing's accidentally reversed. I also have a very mild case of  dysgraphia (mostly flipping the letters p, q, b, and d when I write) unless I really concentrate - or touch-type, which seems to short-circuit the issue. I've been able to work as a technical writer and editor for years without trouble.

    I also have that "see it whole" thing (the balloon analogy); it's useful to be able to see the entire structure of a piece of writing, or how artwork will look when I'm done with it, but its most practical application is that I rarely get lost once I've seen a map and orient myself within it - it's a little bit like having a GPS in my head. Very useful when traveling (if the maps are to scale)!

    Still, my slightly non-NT brain is not on the Autism spectrum, so I do not face some of the challenges you and your daughter do. I think your daughter is lucky to have a parent who can be uniquely supportive to her as she learns to navigate her way through life. This diary is a fascinating peek inside the way you think and experience the world. I really enjoyed reading it!

    It also helps me understand some of my former colleagues better. As you say, people with HFA/Aspergers gravitate toward engineering, math or the sciences and many are quite brilliant. I worked in an Ivy League statistical center for many years and most of our IT staff was from MIT, so the behaviors and quirks of interaction you describe are very familiar to me.

  •  You've given me more insights (4+ / 0-)

    than all the continuing ed classes I've taken.  Thanks for telling me new things and for confirming things that I'd observed in some of my students.  That Bill Gates video is something!

    -7.62, -7.28 "Hold fast to dreams, for if dreams die, life is a broken winged bird that cannot fly." -Langston Hughes

    by luckylizard on Tue Jul 28, 2009 at 06:53:49 AM PDT

  •  Regarding the Gates video (2+ / 0-)
    Recommended by:
    beltane, Vacationland

    that's pretty interesting to watch.  My son does some rocking, but not in a prolonged fashion as in the video.  What he DOES do a lot is the other classic physical attribute of autism - the hand-flapping.  Any reports of Gates ever doing that?

  •  Thanks for the diary (5+ / 0-)

    I have recently suspected that I have Asperger's, or at least the "milder" PDD-NOS.  A lot of what you wrote about it, I can relate to.  I use different movements (rocking, snapping my fingers) as a stress reliever.  I had a lot of difficulty with social relationships when I was younger, especially with women.

    I became an Engineer, but actually left the field because much of the practice (particularly in IT) was not nearly as precise as the "theory".

    My 7.5 year old son was diagnosed with Asperger's over a year ago.  My wife and I decided to tell him that he is different, but focus on his strengths.  He has a gift for spelling like I think I did, and we are giving him words to spell most every day.  He is very good at it, and who knows, he might end up winning a spelling bee someday.  

  •  Thank you (5+ / 0-)

    For sharing so much and making it understandable to  those with no exposure. My son has it and we've always suspected that I do as well.

    I'm reading a book right now called "Look Me in the Eye" By John Elder Robison, so far it has absolutely blown me away with how well I can identify with it. If you haven't read it already I'd really suggest you check it out, it's a great read. We got it out of the base library so I imagine it is available anywhere.

    Do you mind if I C&P this and forward it to my family and friends?

  •  Excellent Introduction to this Topic (6+ / 0-)

    Like you, I'm one of the people who weren't diagnosed with Asperger's until well into my adult life. Like you, I want to stress that you never "grow out" of it, but if you are lucky, you devise coping strategies.

    I'm one of the luckier ones who is near the top of the "high-functioning" continuum. For me, learning about Asperger's was more of an "Oh...that explains it," experience. I don't tend to rock, but I fidget in other ways. One of the most difficult things for me personally, is talking on the telephone, especially to strangers. Oddly enough though, I once worked as a telephone receptionist, and it wasn't too bad...I had a standard greeting and simply had to then connect the caller with another person.

    To counter the social isolation and awkwardness that I feel (especially the difficulty in conversing with others), I've found acting to be good therapy. Since the dialogue is scripted and the interaction between characters is rehearsed, you can feel comfortable interacting with others. My acting training also made me much more conscious of the use of eye contact in conversation. I haven't read much about autism therapy, but I'd be interested in the results of any studies involving acting or drama.

  •  We were lucky with out son. (5+ / 0-)

    He was diagnosed with ASD at 2 yrs old.  In Wisconsin, they are pretty pro-active on catching kids as early as possible.  Our pediatrician had Birth to 3 come in after his 2 yr check-up and they picked up on the autism signs very quickly (i.e. lack of eye contact).  We had an appointment with a pediatric neurologist within a couple of months and had the diagnosis immediately.  Michael is officially PDD NOS, but we just find it less complicated to say he's autistic when talking to others not familiar with ASD.  

    At 3 we immediately got him into intensive home therapy which was paid for by the state of Wisconsin.  We don't want to imagine what he would be like if we hadn't been able to have such early and intensive therapy for him starting at 2 yrs old.  We, and our son, really lucked out in that respect.

    •  My state wasn't the same as Wisconsin (7+ / 0-)

      We don't want to imagine what he would be like if we hadn't been able to have such early and intensive therapy for him starting at 2 yrs old.

      I saw it for myself in Illinois when our autistic son was attending early childhood classes provided by the public school system.  We saw other kids whose parents weren't fortunate enough to have insurance that would pay for a lot of the therapies and treatments not offered by special ed.

      It was a horrible thing to witness.  One boy had prescriptions his parents couldn't afford to fill and didn't get any of the therapies he needed if they weren't offered by the state.  Each day, he would arrive on the bus and one of the teachers would just sit with him on their lap and rock him in a rocking chair to keep him calm.  They tried to get him more involved, but it was very difficult.

      My son's medical treatments and therapies helped him tremendously.  Last year, he was a straight-A student in a mainstream class where he was named Student of the Quarter.  I often wonder, though, what happened to that little boy who wasn't so fortunate.

      When my congressman, Aaron Schock, voted against SCHIP, I thought of that boy and the millions of other kids from families of modest means who would lose their insurance if he had had his way and decided that I would run against him in the next election.

      Hopefully, we can continue to make changes for the better in these kids lives.

      •  Aaron Schock (3+ / 0-)
        Recommended by:
        neroden, mbzoltan, Cassandra Waites

        He was voting with the other Repugs. In other words, he was exhibiting normal NT behavior.

        He was picking up, instinctively, on the social cues of his fellow Repugs; and going along with the crowd, as was necessary for the rapport and to prove himself of normal social functioning. No matter if it wasn't the right thing to do, or if it shows a distinct lack of empathy for those in the outer world. The outer world isn't the point. His immediate surroundings are. And he did a great job of socially interacting with his immediate world.

        [/sarcasm]

        See what I mean about ASD diagnosis being a racket?

        Real Democrats don't abandon the middle class. --John Kerry

        by Lucy Montrose on Tue Jul 28, 2009 at 08:44:30 AM PDT

        [ Parent ]

        •  lol--good way to look at things now (1+ / 0-)
          Recommended by:
          Lucy Montrose

          I love my President! Who'da thought THAT was possible?

          by livjack on Tue Jul 28, 2009 at 09:10:05 AM PDT

          [ Parent ]

        •  Heh, but I think you're right, that's the thing. (3+ / 0-)

          How can I call it a racket when severe NT, excess subconscious reaction to local emotions, does seem to be a a real disability?  :-)  It probably requires practice and training for such disabled people to  be more dispassionate, empirical, and rational about such things, in the midst of these maelstroms of emotion....

          And I'm not kidding.  My fiancee literally has trouble with excess sympathetic reaction and has been trying to "harden" herself, because she picks up on misery or anger and becomes miserable or angry even if that's really counterproductive.

          -5.63, -8.10. Learn about Duverger's Law.

          by neroden on Tue Jul 28, 2009 at 05:33:58 PM PDT

          [ Parent ]

    •  and yet (4+ / 0-)

      my daughter is now 17, and didn't have any professional intervention at all, and she's high functioning and happy.

      There is no scientific proof, as far as I know, that intervention works in the sense that it changes the developmental outcome of a particular individual. You can point to individuals who improve with intervention, but you can also point to individuals who improve without it.

      Back when my daughter was little, some of the early intervention was cruel and brutal (using what were euphemistically termed "aversives" for example). If an intervention isn't making your child unhappy and seems to be working, then of course, go for it. But if the particular intervention is making your child miserable, I don't think you should consider that this is your child's only chance to improve. Look around for something else that fits better.

  •  Mentally left handed? (4+ / 0-)

    One of my grandchildren is an aspie and he knew he was 'different' or weird as he put it, from an early age, so telling someone who has been diagnosed with a "deficit" (which seems harsh terminology) probably would come as no great surprise?

    When his mom told her sister (both my daughters) about his 'condition', the sister said "that sounds just like mom" so I'm on the spectrum somewhere.  When I was young, I was diagnosed as being "mentally left handed."  

    Great diary and will print it off and give it to my daughter.  Thanks!

  •  My 8 year old son has Aspergers (2+ / 0-)
    Recommended by:
    neroden, miss SPED

    He was diagnosed early in life (age 2 1/2) thanks to a wonderful doctor at the University of Vermont. Unlike an autistic child, my son was speaking in full, clear sentences by the time he was a year old. It was his physical development that was delayed; he did not sit up until the age of 14 months and he did not walk until he was 2 1/2. His academic and artistic abilities are astounding, but he does have some behavioral issues around other children (never around adults).

    Thank you for your perspective as an adult with autism. I've tried explaining my son's Aspergers to him, but he is very sensitive about it.

    The weak in courage is strong in cunning-William Blake

    by beltane on Tue Jul 28, 2009 at 07:05:54 AM PDT

  •  Well done! (2+ / 0-)
    Recommended by:
    miss SPED, FarWestGirl

    Wonderful and thorough diary.

    As a teacher, (librarian) do you have any tips for dealing with HFA or Aspy kids when meltdowns occur. Teachers I see just seem to freak-out when this happens. I always just try and give the kids some space to try and calm down and get it together.  

    Thanks again, for this most thoughtful diary.

    •  Giving them space (4+ / 0-)

      may well be the best strategy. When an autie melts down, they don't usually want interaction. They need to be given a few minutes to calm down (or a few hours). It's not the time to reason with them.

      "crush in it's birth the aristocracy of our monied corporations which dare already to challenge our government" -Thomas Jefferson

      by Phil In Denver on Tue Jul 28, 2009 at 07:11:51 AM PDT

      [ Parent ]

    •  OK, this is my advice (6+ / 0-)

      Well, you're doing the right thing to start with, giving some space to calm down.

      Only thing which might help: they are almost certainly melting down about something.  If they've already said what it is, tell them that they are right to be angry/frustrated/whatever about it and you will do something about it, before making efforts to get them to calm down.   If you can't figure out what they're melting down about, tell them that you will listen to their complaint once you can figure it out.

      Not validating their emotions is a recipe for alienation and hostility.

      Once you've found out what's actually wrong it makes it a lot easier to deal with it (facilitated discussions between kids, etc.)

      -5.63, -8.10. Learn about Duverger's Law.

      by neroden on Tue Jul 28, 2009 at 07:18:16 AM PDT

      [ Parent ]

      •  As long as you wait (6+ / 0-)

        until they calm down I agree. During a meltdown is not the time to address anything. We temporarily lose about 30 IQ points during meltdowns. Not the best time to discuss, validate, or anything else.

        "crush in it's birth the aristocracy of our monied corporations which dare already to challenge our government" -Thomas Jefferson

        by Phil In Denver on Tue Jul 28, 2009 at 07:22:37 AM PDT

        [ Parent ]

        •  Well, much of the time when I melted down (4+ / 0-)

          I was furious because I had a complaint which was not being dealt with.  Giving me "space" was just a way of avoiding dealing with my problem, as far as I was concerned.

          "I will deal with your complaint later, I promise" was absolutely necessary to prevent things from getting worse.  I wouldn't do that to a kid who was obviously melting down in a completely solitary fashion, who should just be left alone for a while, but a kid who was acting out at others or demanding help -- that's another matter.  I guess there are meltdowns and then there are meltdowns.

          -5.63, -8.10. Learn about Duverger's Law.

          by neroden on Tue Jul 28, 2009 at 07:28:45 AM PDT

          [ Parent ]

          •  Yeah, I think you are talking about (5+ / 0-)

            being perseverative more than melting down. As I'm sure you know, these kids can be very persistent and insistent. They can go off the deep end if their concerns are not addressed.

            "crush in it's birth the aristocracy of our monied corporations which dare already to challenge our government" -Thomas Jefferson

            by Phil In Denver on Tue Jul 28, 2009 at 07:35:08 AM PDT

            [ Parent ]

            •  Huh, I suppose I've had straight (2+ / 0-)
              Recommended by:
              Exurban Mom, Cassandra Waites

              sensory-overload meltdowns too.  But those are so obvious (hands over ears and eyes) and the correct response is so obvious (remove sources of sensory overload) that I didn't even think about them!

              -5.63, -8.10. Learn about Duverger's Law.

              by neroden on Tue Jul 28, 2009 at 07:53:18 AM PDT

              [ Parent ]

              •  Well my daughter never has those nor do I (1+ / 0-)
                Recommended by:
                Cassandra Waites

                but she's had plenty of meltdowns over frustration. In such cases, there seems to be no reasoning with her or with me. But we find that with time, usually a matter of 20 minutes or so, she's back to normal. I take a good deal longer.

                "crush in it's birth the aristocracy of our monied corporations which dare already to challenge our government" -Thomas Jefferson

                by Phil In Denver on Tue Jul 28, 2009 at 08:07:24 AM PDT

                [ Parent ]

                •  For me it also takes time (3+ / 0-)

                  But if my frustration was with other people (as opposed to a project or something), I had to first be promised that my frustration will be dealt with "later", or my frustration would peserverate and spiral up, and up, and up, and up, and go on for effectively forever.  If I had a promise of help later, I could calm down within a finite amount of time.

                  (Perhaps I had too many very young experiences of never having the problems dealt with; people just isolated me because I'd melted down and when I'd calmed down they acted like things were better, which they WEREN'T, the DAMNED IDIOTS, I'm getting angry even thinking about it.)

                  -5.63, -8.10. Learn about Duverger's Law.

                  by neroden on Tue Jul 28, 2009 at 08:13:28 AM PDT

                  [ Parent ]

                  •  My daughter does exactly the same thing (1+ / 0-)
                    Recommended by:
                    codeman38

                    and I guess I do too, to a lesser degree. We have to tell her something to placate her, but she may be worse than you on that. Simply telling her that her concern will be addressed often isn't enough. I'm hoping that improves with age.

                    "crush in it's birth the aristocracy of our monied corporations which dare already to challenge our government" -Thomas Jefferson

                    by Phil In Denver on Tue Jul 28, 2009 at 08:19:13 AM PDT

                    [ Parent ]

                  •  So here is a question (5+ / 0-)

                    I've got this project manager see, and the guy is always trying to get us all to have social gatherings and have lunch together. God I really hate it. I just want to do my work and go home, I'm not here to socialize.

                    I know he probably doesn't think I'm a "team player" if you know what I mean. But when I go to those damn things I just sit there and eat my lunch and don't really have anything to converse about. It's agony for me.

                    How do I get out of this without pissing off this overly NT manager?

                    "crush in it's birth the aristocracy of our monied corporations which dare already to challenge our government" -Thomas Jefferson

                    by Phil In Denver on Tue Jul 28, 2009 at 08:23:25 AM PDT

                    [ Parent ]

                    •  You may not be able to get out of it... (2+ / 0-)
                      Recommended by:
                      codeman38, Cassandra Waites

                      ...your manager may have included "hold regular lunch meetings to foster a sense of teamwork" on his list of performance review goals, for all we know, so he may see deviation from this goal or plan as counter to his own best interests, as well as the team's. If you cannot beg off attending them (perhaps try to win his sympathy by confessing to having a "mild social phobia" that makes eating with others a very anxious experience for you, and suggest that you be allowed to work through the occasional team lunch instead?), then your best bet is to develop a few coping skills.

                      I feel your pain - I despised "social" or "team-building" lunches at a few of my former workplaces, mostly because my colleagues had very different interests than I did (and also, like you, I just wanted to do my work and go home). It was especially painful and stilted when the team I was working on included a bunch of Actuaries, who (sorry, Actuaries!) tend to be extreme introverts with interests that run to things like baseball statistics. For me, this was torture.

                      I don't have much trouble with social interaction on a normal basis, but for some reason these lunch meetings were hellish. In self-defense, I started preparing a list of topics I could bring up that I either knew a fair amount about, or had a lot of trivial knowledge pertaining to the subject. I would also check YouTube and find out what the most popular viral videos were at the moment.

                      Then, at these lunches, if the conversation ground to a halt (and it always did), I would bring up one of these topics - usually framed as "my brother-in-law [or sister, or an old colleague] sent me an interesting web link the other day, has anyone seen [fill in the blank]?" Then I would introduce the topic, and usually at least a couple of people would have some interest or an anecdote about it. You look like you're making an effort, the manager notices this, and you're off the hook if the conversation dies afterwards - at least you tried, right?

                      It seems like a clinical approach to forced social interaction, but it worked for me.  Good luck!

                    •  Well, you do have (0+ / 0-)

                      a diagnosed disability, and there is the Americans with Disabilities Act, right?

                      Perhaps you could approach the project manager at a time far, far away from one of these forced social events, and explain that you have a "social anxiety disorder" (which is true) and that, while you are would be comfortable at working/collaborative lunches or get-together which have a specific, work-related goal in mind, that required attendance/participation in these social-only events have a medically negative impact on you.

                      Evil is making the premedicated choice to be a dick -- Jason Stackhouse

                      by Frankenoid on Tue Jul 28, 2009 at 06:54:39 PM PDT

                      [ Parent ]

              •  Incidentally, the sensory thing (3+ / 0-)
                Recommended by:
                mbzoltan, codeman38, Cassandra Waites

                was 'eye-opening' (if you'll forgive the wordplay) for me.  I'd suspected Asperger's based on the deficits related to social cues and so forth.

                However, I've also been described by my friends and family as having superhuman hearing and sight.  (Tested at significantly better than 20/20 and can hear the quietest sound they use on hearing tests with no problem.)  And 'bland' foods like rice and bread tastes like it has a strong flavor to me, so .  And perfumes generally make me ill because they're so strong.

                So discovering that heightened sense perceptions are also associated with autism-spectrum disorders was startling and, well, diagnosis-confirming.

                -5.63, -8.10. Learn about Duverger's Law.

                by neroden on Tue Jul 28, 2009 at 08:23:05 AM PDT

                [ Parent ]

            •  And that's what really scares me about ASD. (1+ / 0-)
              Recommended by:
              neroden

              I was socially awkward for a good deal of my life. In a workplace setting, still so; because I haven't yet been very successful. Less so in my social life, and especially in politics.

              I was never diagnosed with autism or AS, though I have worried if I had it. After much deliberation, I came to the conclusion that I don't, because my problem was not in picking up on social cues but how to honor them, and meet my needs too, if they were rejecting ones-- though I still have enough pieces of it to empathize with those who've got the whole enchilada.

              What worries me is how virtues become vices. How strengths become evidence you have a neurological dysfunction. Determination and persistence becomes "perseveration". I can picture whistleblowers and activists being tagged with this label, in an attempt to remove their credibility.

              I've been afraid to be too persistent, too enthusiastic, too passionate about my work, lest I "look like an AS".

              I differ from people here, because I see nothing liberating about a diagnosis of ASD. I fear that if I got one, I would be putting the final nail in the coffin of my employability.

              The fact is that most employers don't want to hire people who don't "fit in". And that's why, in large part, I think the ASD craze is a racket: it's a way to marginalize people who think and feel for themselves, and a way to create an educated socioeconomic underclass. Because employers routinely overlook education, and even hard work itself, in search of the good social fit.

              ASD diagnoses and programs in our schools simply mirror our workplaces' values. Which have been proven to be toxic, and damaging to our economy. The solution to me is making workplace cultures that value skill and education again, and have room for the offbeat.

              Real Democrats don't abandon the middle class. --John Kerry

              by Lucy Montrose on Tue Jul 28, 2009 at 08:06:22 AM PDT

              [ Parent ]

              •  What th? (4+ / 0-)

                Look, I have a little news for you. Aspies and Auties are often VERY successful in their careers. It's just a matter of selecting the right one. It's of no valueto anyone to put a person who can't communicate face to face in a job where they have to make sales pitches and cooperatively work on business deals.

                But give that person a computer and a desk and tell them to work on code and they might save a company from complete destruction.

                I don't do well at all in managerial type roles where I have a lot of human interaction, but I still manage to earn at lest double the national average as a software engineer.

                Here is a hint, you don't wear your diagnosis on your shoulder, just don't be stupid about what career choices you make.

                "crush in it's birth the aristocracy of our monied corporations which dare already to challenge our government" -Thomas Jefferson

                by Phil In Denver on Tue Jul 28, 2009 at 08:13:32 AM PDT

                [ Parent ]

                •  I think the number of actual ASD cases is much... (1+ / 0-)
                  Recommended by:
                  mbzoltan

                  ... lower than we think. In many cases, it's simply "Toxic and Coercive Culture Disorder".

                  I think a lot of ASD cases would simply vanish if we returned our social world to human scale. And we did a better job of making kids feel not only safe and emotionally supported, but like they had a sense of control in their own lives.

                  I fear that a lot of these childhood behavioral programs do a terrible job of that. With their single-minded focus on making the child "appropriate", they remove the child's voice, their sense of agency and personal power. And that can create emotional problems where they didn't exist before.

                  Real Democrats don't abandon the middle class. --John Kerry

                  by Lucy Montrose on Tue Jul 28, 2009 at 08:24:22 AM PDT

                  [ Parent ]

                  •  I have to ask... (6+ / 0-)

                    do you know anyone well who has been diagnosed on the autism spectrum?  I mean really diagnosed -- gone through the dozens and dozens of pages of questionnaires, and hours of testing, which constitute a thorough evaluation.

                    Having autism doesn't mean you're a little bit "quirky".  Diagnostically it means that your collections of quirks significantly -- "qualitatively" -- interfere with your ability to communicate and interact socially, and which restricts your attention or behavior.

                    Here's an example.  Most kids, beginning quite early in toddlerhood, strain at the restraint and interference of parents.  The mantra is "I can do it myself".  They crave independence; they want to dress themselves, feed themselves, try new things.

                    My son had to be pushed, shoved and coerced into doing everything.  As a baby, he didn't try to feed himself.  He'd eat a cracker -- if I put it in his mouth.  But he would not pick up the cracker and put it in his own mouth (it's a family legend now that the first time he fed himself was when he got barbecue sauce on his fingers at @ age 1; he hated having dirty hands so stuck his fingers in his mouth to get that stuff off... and finally made the connection that he could put good tasting things in his own mouth and so grabbed a barbecued rib off my plate to gnaw on).  He wouldn't hold his own cup or bottle.

                    Getting him to undress/dress himself was a year long process.  First we got him to take off a sock.  Then his underwear.  Week by week, one article of clothing at a time until he was finally disrobing on his own.  Then reversed the process on getting the clothes back on.

                    His need for routine, for "mom and dad have always done this so that's how it always would be" outweighed the normal developmental desire for independence.

                    Now, if you saw my kid in a classroom (he is mainstreamed), or playing with other kids (and he greatly craves friendship and social connection), you wouldn't necessarily guess he was on the autism spectrum.  He's just a kid.  But he's not like other kids and that he can be "just a kid" has taken a lot of hard work and understanding.

                    Evil is making the premedicated choice to be a dick -- Jason Stackhouse

                    by Frankenoid on Tue Jul 28, 2009 at 10:51:59 AM PDT

                    [ Parent ]

                    •  No, I'm afraid not. (long, sorry) (0+ / 0-)

                      I've read about many people's experiences with themselves or their kids on the web, but I've met very few face to face. Big problem.

                      I'm glad that the qualified authorities take the diagnosis of ASD a lot less lightly than society at large does-- though in our elementary schools, I fear that breaking down.

                      When I was 5 years old, I moved to another state away from my two best friends. My mother said she had never seen so many tears. In my new home, I'm tested by a child psychology center that's now defunct, which tells my parents I'm "emotionally and behaviorally impaired", and Mom said they tried to give me meds. She refused.
                      I was never diagnosed with autism, ADD, or even Asperger's; but I worry I might today if I went in. The fact of the matter is, the mechanism of proving your social adeptness is largely out of your control-- you can't control whether others are going to favor you, no matter how good your behavior is; but them favoring you is, unfortunately, your "proof". Essentially, your personality or neurology is held responsible for other people's decisions, just like The Secret saying you attract bad experiences to yourself; and that is just wrong.

                      It was also right about this time I heard my voice on a tape recorder for the first time, and I loathed it. I also saw myself on video, and I didn't like how it differed from how I'd felt to be carrying myself. It hit me for the first time that how I presented myself might not be as good as how I saw myself. So I decided I would avoid anything that required I have a good image. Because even then, I wanted my self-image to match how I came off to the world.

                      I also remember so many of the behavioral class teachers-- which my mother kept insisting were my friends-- act in ways to me I saw as condescending, and not respectful of my "voice". I wasn't convinced at all.
                      I think this environment, and the drastic change it posed from the joyful, supportive social environment I'd moved away from, was the real culprit behind my "emotional problems". Because I definitely was not like your son. I'd had never had a developmental issue before, just a tendency to wander off on my own, touch things in stores, and get mouthy.

                      I came to the conclusion that if I were stuck at any phase, it would be the "romantic phase". Approximately at age 4 to 7, this is where kids really start to get conscious of their social world, and to want to be a part of it. This often manifests itself in wanting to spend more time with the opposite-sex parent than with the same-sex parent, but not always. It is almost universally characterized by competitiveness, sensitivity to slights, and assertion of superhuman powers. Children who as criticized or shamed for this often react by being inhibited and ashamed. They may stop trying to get positive attention from the opposite sex, or even any relationship satisfaction at all.

                      I remember getting criticism at that age for being too emotional, as well as what I saw as condescension. I remember wanting intensely to be a part of everything, and breaking more than a few social rules to get a piece of it. Because I thought that sitting around waiting for others to favor me, or extend me an invitation, was BS: but unfortunately, it seemed to be the only socially correct option. So even back then, I saw the double bind and I wanted no part of it.

                      I don't remember too much more, but I do know that I never quite was "all right" with letting go and being realistic about my own powers in relationships. I never did think I would be good enough if I didn't stand out in some way, or be the very best of the bunch-- and I'm afraid the job market is fomenting that even today, because the pressure to be the very best applicant out of 500 or a 1000 is driving me crazy. It makes me feel like I need a whole new life. Get me that time machine; I want to redo the last 10 years.

                      The romantic phase comes a lot closer to the mark IMO in understanding how we learn to relate to each other. It has nothing to do with ASD. And we ignore it at our peril.

                      Real Democrats don't abandon the middle class. --John Kerry

                      by Lucy Montrose on Tue Jul 28, 2009 at 12:19:28 PM PDT

                      [ Parent ]

                      •  Your issues on their surface (3+ / 0-)

                        as described here don't even sound like ASD. But that does not mean that the people who may share some commonality of symptoms with you have been misdiagnosed. There is a great deal more in the Autism DSM IV than the handful of things you describe or apparently cause you to believe define those of us who have been diagnosed.

                        Your previous comments sound almost like the ignorant ravings that Dennis Leary was recently criticized for (though not quite that bad).

                        There is a LOT that goes into an autism diagnosis and really having been involved with it for a number of years now, I have to say that Childfind does a damn good job, far better than ANY independent psychologist I have ever seen, and believe me I've been to plenty of them.

                        Please don't do us the disservice of trivializing the disabilities with which we have been saddled. None of us on the spectrum has asked for this, it is the hand we were dealt.

                        "crush in it's birth the aristocracy of our monied corporations which dare already to challenge our government" -Thomas Jefferson

                        by Phil In Denver on Tue Jul 28, 2009 at 12:31:34 PM PDT

                        [ Parent ]

                        •  It is rather difficult for me to phrase it... (0+ / 0-)

                          ... that doesn't sound like trivialization. I don't think I will ever see eye to eye on diagnosis with you. It's based on my own life experiences and I agree to disagree.
                          I do have a tendency to use loaded words, probably out of a misguided quest for efficiency and punch.

                          I guess the best way I can put it is: everybody, no matter their disability, should be treated as competent and as equals.

                          ASD looks, first of all, to me like a pernicious excuse for people in power not to do that. Was it codeman who posted the link to "Neurotypical Privilege"? It's on this thread, under the heading "speaking of power imbalances". It absolutely broke my heart. Especially the way the non-NT's entire emotional experience and judgment are often invalidated.
                          Especially since the line between ASD and the quirky side of normal human behavior is so blurry, this invalidation, to me, is criminal. And no, I wouldn't put it past corporations and their enablers to do anything to keep in place a certain power structure they like.

                          I would be a LOT more worried about potential sociopaths. ASD'ers, by and large, are ethical and empathetic. Sociopaths are not, are truly dangerous to others... and by the way, often have good social skills.

                          I am, for the record, most likely what Vacationland described-- on the outer edges of ASD, pressing my nose against the glass.

                          Real Democrats don't abandon the middle class. --John Kerry

                          by Lucy Montrose on Tue Jul 28, 2009 at 01:09:43 PM PDT

                          [ Parent ]

                          •  That line may be blurry to you (3+ / 0-)
                            Recommended by:
                            Frankenoid, neroden, Cassandra Waites

                            but it's crystal clear to anyone who bothers to actually look through the DSM IV. Autism in all it's forms is a neruological disorder that makes it impossible or difficult to communicate because of a lack of comprehension of some elements of human communication. It is at it's minimum, an inability to see that which the NT is capable of seeing (social cues, eye reading, knowing how to small talk, etc).

                            You are seeing it as a behavioral condition, it is not, behavior is a manifestation, it is not inherent in root of the condition. How we behave is a reflection of how we comprehend the world around us.

                            To the extent that ASD is used as an excuse not to deal with it by NTs is in my view less relevant. I read link you posted, it's nothing I haven't seen before. But in truth I do disagree to an extent. NTs and ASDs do see things and function differently.

                            It's not the NTs responsibility to pander to our disabilities, but it is their responsibility to make reasonable accomodation. I think I can speak for most when I say that that's all any of us really want.

                            "crush in it's birth the aristocracy of our monied corporations which dare already to challenge our government" -Thomas Jefferson

                            by Phil In Denver on Tue Jul 28, 2009 at 02:05:14 PM PDT

                            [ Parent ]

                          •  "Equal" is not (3+ / 0-)

                            "same".  A blind person cannot drive a car.  And a person with autism lacks emotional and social judgment and awareness.  Our son can not tell the difference between "big deals" and "no big whoop"; he's really good at following rules once he understands them, but has no natural tolerance to others who don't adhere to those rules, no matter how minor the infractions are.

                            He will play at a videogame, unaware of his increasing frustration, until he starts biting himself and bashing his head against a wall because he can no longer bear the pressure he's putting himself.  Should we "validate" that?

                            No... it is our job, as parents, to teach him to recognize when he's feeling frustration, or hunger, or anger, and that he needs to take a break from whatever the situation is before he has teeth marks on his arm and bruises on his forehead.

                            Teaching a blind person to use a cane or read braille doesn't "invalidate" them.  Nor does teaching autistic people a means to read social cues, or to recognize emotional states, to which they are blind, invalidating them.  It's called "accomodation", exactly how all of our differences should be dealt with.

                            Our son's autism is never an excuse for anything, even if it is a reason for his behavior.

                            Evil is making the premedicated choice to be a dick -- Jason Stackhouse

                            by Frankenoid on Tue Jul 28, 2009 at 04:34:18 PM PDT

                            [ Parent ]

          •  My son has meltdowns (1+ / 0-)
            Recommended by:
            codeman38

            when expectations he has are not being met. He likes things planned out and orderly and if we plan something and then a random event gets in the way.. its hard for him.  But yes the best way is to give him space. Though he will say "Can you tell me now?" But sometimes I cannot tell him now..because I don't know! In my experience, the best thing is to give time, maybe say 'we will talk about this late" and then, talk about it later.

            •  same with my son. I've found that if (4+ / 0-)

              I endeavor to lose my typical reaction of "what's the big deal?" and let him come up to speed on his own, things go a lot better.  So much of this excellent diary is teaching me how important it is to not let NT behavior always triumph over atypical behavior.  Thanks again, Phil and all here.

              I love my President! Who'da thought THAT was possible?

              by livjack on Tue Jul 28, 2009 at 09:17:27 AM PDT

              [ Parent ]

        •  Of course any young child (2+ / 0-)
          Recommended by:
          neroden, miss SPED

          can have a melt down where it is impossible to reason with them, but we've noticed with our 7 yr old son, that his meltdowns are really quite something.  I agree, they just need to have some open space around them so they don't slam into anything and then time to allow them to calm down and regulate.

      •  My son sometimes has fits (4+ / 0-)
        which may have a physical aspect. He certainly doesn't want to be touched when that happens. But he feels more comfortable if I remain in proximity. So I will place him on a couch, and sit on the floor in front of the couch. Sometimes, the fit may be related to sensory issues related to GI issues or headaches. Other times it may be related to his seizure-like brain activity. If it becomes clear he is tantruming, as opposed to having a fit, I generally say "Tell it to the judge." If the tantrum is related to wants not being met, he will stop fairly quickly. If it has to do with needs not being met, as time passes, he will grab my hand and lead me to what it is he needs. The fact that my son is non-verbal can make for interesting interactions.

        Ancora Impara--Michelangelo

        by aravir on Tue Jul 28, 2009 at 07:46:23 AM PDT

        [ Parent ]

        •  That's extremely wise. (0+ / 0-)

          If the tantrum is related to wants not being met, he will stop fairly quickly. If it has to do with needs not being met, as time passes, he will grab my hand and lead me to what it is he needs

          Almost archetypically correct.

          -5.63, -8.10. Learn about Duverger's Law.

          by neroden on Tue Jul 28, 2009 at 07:51:48 AM PDT

          [ Parent ]

  •  This is an excellent diary! (1+ / 0-)
    Recommended by:
    Phil In Denver

    My son has some form of high-functioning autism. He was star student in the autism class, but still needs help in regular classes and has all sorts of social issues. he wants friends, but finds it hard to find them. Talking on YouTube or Facebook is a lot easier for him.  

    But one issue I have about this whole aspie/Autism etc. thing is that, I believe, we need to all step back in our thinking and consider why these are called "disorders" Its not like kidney failure, in which there is a clear objective criteria of "health" and the failure is, well, not healthy. Its a matter of statistical norms and ability to function within certain contingent social structures. So, in  most places. walking around and waving your arms back and forth laughting is considered abnormal. but its not a disease, its just different, and as such the aforementioned stimmer is disadvantaged. In a society of people who regularly did this all the time, the rest of NTers would be disadvantaged.  

    Autistic spectrum people need help, but the help is to allow them to flourish as much as possible given their own standards of flourishing.

    If there was a "cure" for autism, should it be given to people. Yes, but only if they want it! (

  •  Just sayin'- re 'social queues'. 'Cue' is the (0+ / 0-)

    correct spelling for this usage. 'Queue' is either a braid or a line, (as in waiting in line). FWIW.

    Good diary.

    Information is abundant, wisdom is scarce. The Druid

    by FarWestGirl on Tue Jul 28, 2009 at 09:09:58 AM PDT

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