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Happy World Autism Awareness Day, Daily Kos!  (Link to previous World Autism Awareness Day diaries)

I've been wishing that to all of you for 6 years now, but the times they are a'changing.  A wonderful and interesting thing is happening out there in the world of autism; kids are growing up.  Kids and former kids on the spectrum are starting to speak up.  The internet has allowed them to express themselves in ways they might not be able if they had to speak in front of a crowd.  My own girl hasn't yet started blogging, but her art is her chosen method of communication for now, and it speaks loudly.  Her website, www.EllieCastellanos.com, features a lot of it.  I invite you to go explore it and see what Ellie has to say.

Turns out a lot of these kids have a lot to say, and as a parent and advocate for my daughter, I've felt it's been my duty to listen, to read, and to think hard about what they're saying.

Some of it is controversial.  Some of it is painful to me as a parent.  But at the same time I find it awesome and thrilling to hear these voices speaking up and creating a powerful community for themselves.

My daughter with autism was born in 2000.  Autism was not on my radar.  By the time it was patently obvious that she had autism, at age 2 or so, there weren't a lot of resources for parents.  To say that I have learned as I go is the understatement of the century.  To say that I've raised my daughter by trial and error, you must place emphasis on error.    I don't think my story is unique in that sense, especially for those of us whose kids with autism were born in the 20th century or very early into the 21st.

As a parent, you make mistakes, but as you are making them you pat yourself on the back for your wise and learned parenting decisions.  It is only much later that you learn how badly you f***ed up.  

When Ellie (my daughter with autism) was young, there was a lot of talk of "cure".  In some circles, there still is, but it is now a highly charged, controversial topic.  I bought into the "cure" talk when Ellie was young, especially when it appeared that she would be very impaired, and we feared for her future.  My opinion on "cure" changed one day, when I watched a video of a DAN (Defeat Autism Now!) conference, which focuses on a cure.  There was a parade of "cured" children marched through the room, as onlooking parents clapped and cried.  You could see the electric desperation on their faces.  They wanted their child to be in the parade.  They wanted their child to be cured.  It was a spectacle that horrified me.  I didn't like to see the children paraded around like that, like they had won some sort of competition.  The atmosphere in that room was uncomfortable and disturbing to me.

Here's what they didn't know, and I didn't know.  There is no cure for autism.  No child has ever been cured from autism.  Some children benefit hugely from early intervention.  Some children don't.  Some children seem to have early impairments that fade as they mature; others don't.  These children weren't cured by the DAN interventions.  They simply followed their natural path and the parents declared their children "cured".  

The search for a "cure" can involve dangerous and invasive interventions.  There was a diary series here at Daily Kos by one of these youngsters (here and here) who has since grown up and wants to share with people how harmful it can be.  Voices such as these are critical moving forward from awareness to acceptance of autism and the place it takes in our society.  This young man, and my own daughter, were subject to interventions that were not only unwise and potentially harmful (though luckily no harm fell to either), but unnecessary.  

The most valuable lesson I learned from my early fumblings around as a parent of a child on the autism spectrum was this: watch, think, read, learn, ruminate, seek varied opinions, including your own, before making decisions.

Now we have even more sources of information to draw from, and these may be the most valuable of all.  The voices of kids who have grown up on the spectrum.  What I'm finding as I read more and more of these stories, is that I'm not alone in many of my thoughts on autism, and that I'm dead wrong on others.

Here are a few things I have learned lately that surprised me:

There is a growing movement of people who do not appreciate the efforts of mainstream advocacy organizations like Autism Speaks

Some people feel that legislation designed to "combat" autism seeks to eliminate autism, thus eliminating them

Other things I have known all along but had never seen them expressed so systematically before:

Discrete Trial methods can be torturous and teach compliance rather than skills

Eye contact is not the end all/be all skill that it is sold as

Autistic people don't want to be pitied, and they don't see themselves as "suffering" from autism

Sometimes as a parent I feel as if I'm walking on a tightrope.  I want to advocate for my daughter without presuming to speak for her.  I am told on the one hand by some teachers that I "underestimate" my daughter because I insist she doesn't need to learn to work in a store because she will never work in a store, not in the way they want her to.  Working in a store would force her to work around her deficits rather than working with her strengths, of which she has many.  On the other hand I'm told by autism self-advocates that I should teach my daughter to advocate for herself rather than advocating for her.  In that way, I'm again being told that I'm "underestimating" her.  I wish someone would explain to me how I should teach a girl who seems to have no interest in conversing with anyone how she could self-advocate.  

Through it all I think the skill most valuable to me is the ability to listen, and to be open.  I am learning a great deal and I do have faith that my daughter will find a vocation, probably not in a store, and that she will learn to self-advocate, probably with my or others' help.

Please join me and many others in moving beyond simply being aware of autism, and accepting that there are a lot of people with autism out there (newest CDC numbers place it at 1 in 68) and that they have their own stories to tell.  It's time as parents to turn over the baton and start listening to their needs instead of assuming we know everything that is best for them all the time.  

It's time to accept that we have autistic co-workers, neighbors, family and community members, and that we might need to accommodate ourselves to them instead of always asking for the other way around.

It's time to accept that even though autism comes with challenges to individuals, families and communities, it is not a tragedy, and they are not a burden.  If you think that kids with autism are a burden, then you think that all children are a burden.  They all come with needs and challenges that effect us in unexpected ways; yet rarely do you hear anyone referring to a new baby as a "burden" or a neurotypical child as a "burden".

It's time to accept that communication comes in many shapes, forms and sizes, and to be creative in our "listening" skills.  Sometimes listening means putting yourself in someone else's shoes to try and figure out what they are communicating to you.  You don't just use your ears to listen.

Autism is here to stay.  It's time to stop broadcasting awareness and start accepting that autism is a part of our humanity and community, and that they have a lot to offer the world.  Get to know an autistic person on their terms and you'll find your own world expanded in ways you might not expect.

Originally posted to coquiero on Wed Apr 02, 2014 at 04:58 AM PDT.

Also republished by Parenting on the Autism Spectrum and KosAbility.

Poll

Would you say that you are quite "aware" enough of autism, and that it's time to educate the public on how to accept autistic people and not just be aware they exist?

86%20 votes
4%1 votes
0%0 votes
4%1 votes
4%1 votes

| 23 votes | Vote | Results

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Comment Preferences

  •  Tips for Autism Acceptance (17+ / 0-)

    A recent work of Ellie's.  It's one of my faves.

    I blog about my daughter with autism at her website

    by coquiero on Tue Apr 01, 2014 at 11:21:54 AM PDT

  •  From one parent to another... (9+ / 0-)

    thank you for this~

    I shave my legs with Occam's razor~

    by triv33 on Wed Apr 02, 2014 at 05:28:35 AM PDT

  •  Beautifully and powerfully stated. (8+ / 0-)

    Kind of glad a minor emergency made me stay up so late (not been to bed yet) that I got to see this much sooner than anticipated. A bit fuzzy-brained, 'tho, so I'll come back after what sleep I can get, looking forward to reading comments. Meanwhile, great job, coquiero, a great voice for the gifts of diversity. WELL DONE.

  •  I think the biggest thing I learned (8+ / 0-)

    from my autistic son and my experience raising him has been to trust myself. I knew before he was 2 that something was wrong, but all the doctors kept telling me that 'boys just talk late' and 'boys are just tougher to raise than girls'. I have two younger sisters and he was my first child, I had no practical experience with little boys.
    I didn't have a word at that point for what was going on with him, but I started treating and teaching what I saw going on despite what the doctors were saying. We worked on eye contact with sign language (look at me), we talked to him, and talked to him, and encouraged him to communicate however he could. We used his echolic speech to grasp what he was trying to say, and rewording it to him, and gave him confidence that he could communicate.

    My son is high functioning autism, but when he was little he was severely affected by it. He had frequent melt downs (I'm talking 20 times a day plus). Most of those were in the form of very violent tantrums that damaged people and property. Autism was first raised as a specter when he was 4 and in Head Start. But still the doctors wanted to give him LOTS of other labels and 'rule out' autism when everyone else could plainly see how well Autism fit him. Most of the labels he was given then have been cast aside because they never quite fit right.

    Much much later when I went to school for OT my teacher was amazed with how far he'd come, without ever having a lot of the therapies he should have. I'd worked on instinct, but he'd make eye contact, if only briefly. He would talk to people he just met, even if it was about his interests and hesitant at times... we were working on the melt downs. That schooling gave me many more resources to use with my son and he's benefited for it. But I learned that my instincts were correct, that I could figure out what was wrong and do something to help him, even when every road block was put in my way.

    "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

    by FloridaSNMOM on Wed Apr 02, 2014 at 06:25:02 AM PDT

    •  FloridaSNMOM, your story is familiar to me (8+ / 0-)

      Some people have good instincts with autistic people, some people don't.  It's hard to teach, unfortunately, which is why we have some piss poor teachers out there when it comes to autism.  They want one size to fit all, and that doesn't exist in the autism community.

      I was the only one, after a full year of intense intervention from behavior therapists, who was able to potty train my daughter.  I just knew that the strategies they were pursuing with her weren't working, at all.  All she needed was a little more time.  She wasn't ready.  I've found that to be powerful.  Wait, watch, keep trying, and they WILL communicate to you when they're ready.

      Sometimes the more people claim to be "experts", the less they seem to know.

      Although I've often said that by now I've earned myself a PhD in "Ellie", so I guess now I'm claiming I'm the expert.  :)

      I blog about my daughter with autism at her website

      by coquiero on Wed Apr 02, 2014 at 07:17:05 AM PDT

      [ Parent ]

      •  Expert professionals' expertise is in the majority (1+ / 0-)
        Recommended by:
        coquiero

        of the clients/patients with the particular issue, partly because majority/largest results and methods are what's reported from research and what's taught in professional education.

        In the medical field, some welcome elements in patient safety are pulling for more individualized/personalized medical care (the term varies, depending on the med journal articles I've seen) with a higher vigilance for patients whose medical history and/or response to treatment/therapy shows they are not within the majority and therefore not only far less likely to be helped by what helps the majority but more possibly harm-able.

        A parent/caregiver with just one client/patient/child is in a good position to be an undistracted unswayed-by-majority-effects observer and reporter of observations, providing that parent/caregiver has the resources of attention and time to observe.

        (A better social safety net would support resources for observation by parents in socioeconomically straitened circumstances, and the resultant better coping and better interactions with healthcare providers might well decrease the extent of healthcare needed by the patient/child in the future.)

  •  My son turns 11 tomorrow. Our awareness of his (10+ / 0-)

    Asperger's didn't "officially" start until he was 6 or 7, but we always knew something was atypical, really.

    Your last few paragraphs.  I couldn't agree more.  I wish there was a bumper sticker that could sum up this message.  I can't count the times some well-intentioned person has told me how much they "admire" me because of the patience I have when I'm "dealing with" my son.  They don't explicitly use the word "burden," but it's implied.

    I thank them, of course, but I wish they would save their admiration for MY patience and turn it into a SOCIETY that has more patience for anyone who travels a less typical path.

    Great, great diary, coquiero.  We are all fortunate to have your voice in the chorus.  

    Happy World Autism Awareness Day!        
     

    "Growth for the sake of growth is the ideology of the cancer cell." ~Edward Abbey

    by koosah on Wed Apr 02, 2014 at 06:33:34 AM PDT

  •  Thank you for this powerful diary, coquiero (6+ / 0-)

    We have much to learn, much to do, and far to go. Thank you for helping us with our journey. Tipped, recc'd, and Tweeted.

  •  TY for this. I've been aware of autism (7+ / 0-)

    and have read a great deal about it for years now. I've long thought, with my hypersensitivity to noise and my largely unsuccessful efforts at developing relationships, that I share at least some characteristics with people on the autism spectrum - albeit in a very mild form.

    I hope I don't sound "too commercial" with this, but I'd like to mention that CafePress, one of the two big print on demand sites, is donating 10% of proceeds from sales of products with autism-related designs. I contributed some designs to the cause, and you can see them on products here:

    http://www.cafepress.com/...

    If nothing else, the colors will brighten your day :)

    I don't love writing, but I love having written ~ Dorothy Parker // Visit my Handmade Gallery on Zibbet

    by jan4insight on Wed Apr 02, 2014 at 08:48:49 AM PDT

  •  The doctor who diagnosed my (6+ / 0-)

    son's Asperger's told him that his tendency to be very literal and to the point, and to not like to argue for the sake of argument, is a very common trait in Aspies, and that many of them are rather proud of that trait--even feeling that it makes them, in some way, superior to everyone else. Then the doctor tilted his head and laughed and said, "You know, the probably are."

    He also told him that the Microsoft campus in Bellevue, WA has a good-sized support group for the Aspies who work there.

    It's been a difficult journey, but my son now accepts who he is, even shrugging it off--saying he just processes information differently. He still struggles with making solid friendships, but I truly believe he will eventually find kindred spirits.

    I was going to blockquote some of what resonated with me most in your diary, but I can't unless I paste the whole diary here. Your consistent message is  acceptance, and I whole-heartedly agree. With loving support, kids will find their way.

    Thanks for helping raise awareness by sharing your daughter's story.

  •  Unfortunate that you've detatched from reality (3+ / 0-)

    Awareness (which means a lot more than just knowing autism exists), acceptance and accommodation of difference, aggressive advocacy to promote scientific inquiry to uncover better therapies and perhaps a cure for some someday, and advancing the development of a wide range of individual choice driven lifespan supports and services are not incompatible with one another.  Those who hold the view that they are have chosen a rigid ideology over reason and that rigid approach benefits no one in the end.    

    What may be right for you, your family, your child or loved one, and many others similarly impacted by autism may be completely inappropriate for another individual or autism subgroup.  Blanket, uninformed assertions like ABA is a bad thing or Autism Speaks is the Great Satan because they support research to find a cure, is utter nonsense.  ABA and other intense one on one programs  have helped thousands of kids develop skills in language and cognition. The obscenity is that insurance companies have been able to discriminate for so long and force families into financial straits when they try to access this proven therapy that works for many (but not all)

    Autism Speaks has led the national effort to fight this discrimination.  They have also brought (for the first time) scale and effectiveness to advocacy and science.  Before them, autism research was a career dead end. DC used to say good things and spend no money on autism.  

    They've also made some boneheaded, insensitive statements from time to time but if you actually look at the organization and it's mission, they welcome any and all who support it, whether a parent, family  member, self advocate, or anyone else.  

    Some of the circumstances some in the autism community face are indeed tragic. If you want examples, I have plenty. The burden individuals and families face may indeed be heavy.  That doesn't mean that people with autism are a burden.  By drawing attention to the struggles many face it stimulates positive policy responses in the form of funding and programs...a helping hand...for everyone impacted by autism.

    "Those dunes are to the Midwest what the Grand Canyon is to Arizona and the Yosemite is to California." - Carl Sandburg

    by Critical Dune on Wed Apr 02, 2014 at 03:20:19 PM PDT

    •  You're entitled to your opinion (2+ / 0-)

      No need to be rude about it.

      First off, I didn't make a "Blanket, uninformed assertions like ABA is a bad thing" or that "Autism Speaks is the Great Satan".  Far from it.  

      The fact remains that Autism Speaks "represents" autism advocacy without having a single member of their board on the Autism Spectrum.  They have rejected repeated calls to tone down the fear mongering.  Their significant fundraising goes mostly to a search for a "cure" or the search for a cause.

      How about those on the spectrum who need housing?  Better education?  

      Try reading the diary again, if you care to, without wigging out with knee-jerk reactions, and then we could have a conversation.

      Thanks for stopping by.

      I blog about my daughter with autism at her website

      by coquiero on Wed Apr 02, 2014 at 03:47:45 PM PDT

      [ Parent ]

      •  I thought the diary title was disrespectful (2+ / 0-)

        to the thousands of people who volunteered their time and effort to make World Autism Awareness Day a successful global event.  These things don't just "happen" in a vacuum.  People work incredibly hard to organize this and similar efforts.  

        Awareness will remain a critical issue as long as there are people who are impacted by autism.  Awareness incorporates understanding of the wide range of specific issues, challenges and opportunities involved with autism, whether related to science medicine health education employment housing safety or economic impacts.  On every issue one can think of, there is a tremendous lack of awareness about what autism brings to the table.  So no, you're wrong. It is far from time to move beyond awareness.

        I think it really helps, especially in a political forum like this one, to do research on the issues. You might be surprised to learn that Autism Speaks is leading efforts on housing.  They funded the first ever large scale national housing survey on the needs of the autism community, including self advocates.  It's a must read (and pretty disturbing in terms of the lack of choices and options)  http://www.autismspeaks.org/...  
        There are many other ongoing housing related projects at AS: http://www.autismspeaks.org/...  These projects include a joint venture geared toward critical training for adult service provider organizations.  Take a look when you can.

        You might also be surprised to learn that they are leading the effort on autism employment issues.  With some 80-90% of people with autism unemployed (per recent Easter Seals research) this issue is critical.  So AS has developed large scale partnerships with leading employers like Google (and tons of others) to develop the basic infrastructure to bring people into the workforce with meaningful jobs.  Small business is a big area of focus  too. You can read all about what's happening on that front here: http://www.autismspeaks.org/...

        I'm confident that over time the Board representation issue will resolve itself.  Tokenism isn't the answer. AS is a very young and originally parent driven organization so it'll evolve.  There are tons of people on the spectrum in staff and leading volunteer roles right now.  Keep in mind that in any non profit, Board seats go to people who fully support the mission and want to take leadership roles promoting it.

        Many folks prefer a local approach and focus their efforts on supporting organizations and service providers in their communities.  I think that's great too but don't be shocked if they are already receiving some funding for their autism programs from Autism Speaks in the form of community grants.  That's a big effort too.  

        Finally, I am truly delighted that your daughter are in a "good place" and you want the community to value and respect her and others on the spectrum.  That's a great message but I hope that you can communicate it going forward without negative comments regarding the approaches others may be embracing.  There are many and varied challenges and opportunities and no single approach that is best for all.  

        "Those dunes are to the Midwest what the Grand Canyon is to Arizona and the Yosemite is to California." - Carl Sandburg

        by Critical Dune on Thu Apr 03, 2014 at 06:05:29 AM PDT

        [ Parent ]

        •  Please point out a negative comment I made (1+ / 0-)
          Recommended by:
          i saw an old tree today

          Merely noting that certain things that have been taken as "autism gospel" are not all they seem isn't negative.  You seem to want people only to focus on the good of what YOU think is good.

          Autism Speaks may be the leader in housing and education, because they are the biggest player in the game.  Now, you might be surprised to know that only about 4% of their grants go to housing and education.  The vast majority of it go to "cure" and early detection.

          Edge it closer to 50/50, and embrace the community that you are supposedly serving, and you might find you have less pissed off people.  Imagine a women's advocacy organization with only men on the board.  It's patently ridiculous, and yet you call it "tokenism".

          You seem to be appalled that I dared criticize Autism Speaks.  I certainly didn't do so in any strident way.  I linked to a letter from a respected organization that told their side of the story.

          I do not "embrace" any one approach.  I merely note, which you yourself do, that this is not a one size fits all community. Take a little of your own advice, please.

          And the fact that you find my title disrespectful speaks loudly to the your oversensitivity on the issue.

          I blog about my daughter with autism at her website

          by coquiero on Thu Apr 03, 2014 at 08:37:50 AM PDT

          [ Parent ]

        •  Oh, not to mention (1+ / 0-)
          Recommended by:
          i saw an old tree today

          Autism Speaks support of a school that attaches kids to electrode belts and uses punitive shocks as a behavioral treatment.

          I wonder how much of the 4% of grants went to that fine organization.

          I blog about my daughter with autism at her website

          by coquiero on Thu Apr 03, 2014 at 08:58:31 AM PDT

          [ Parent ]

          •  Now you're really going off the rails (2+ / 0-)

            AS made a statement a long time ago on the JRC issue, which clearly states their opposition to the use of aversives in all circumstances.  It's easy to find if you care to look for it, rather than regurgitate tiresome, old, inaccurate attack piece.  

            As with the above and the other issues, I'm pretty sure you already know the answers.  The core of most of the opposition to AS is, at the end of the day, based on an anti-science agenda.  Science being the core mission of the organization and reason for it's success.  

            I for one am a big supporter of funding science and perhaps finding a cure for some who want one someday because I don't fear knowledge. We need more of it, and not subject litmus tests promulgated by fringe groups. We need supports and service focus, too and AS is rapidly growing that effort.  These thing are not mutually exclusive.  Again, in the future, whether directly or by linking to proxies, please keeo the message a positive one.  There is work to do on many fronts.

            "Those dunes are to the Midwest what the Grand Canyon is to Arizona and the Yosemite is to California." - Carl Sandburg

            by Critical Dune on Thu Apr 03, 2014 at 09:50:00 AM PDT

            [ Parent ]

            •  No, you are off the rails (1+ / 0-)
              Recommended by:
              i saw an old tree today

              I provide links, you provide none.

              You talk of science, when my criticism have nothing to do with science.  What the heck does funding distribution have to do with science?

              Get your head out of the sand.  Dismissing criticism of Autism Speaks as "anti-science" and "fringe" shows that yours is a knee jerk defense.

              Let Autism Speaks truly become an organization who speaks for, with, and by autistic people.  

              You think you are being righteous, but you're just being stubbornly obtuse.

              I blog about my daughter with autism at her website

              by coquiero on Thu Apr 03, 2014 at 09:59:30 AM PDT

              [ Parent ]

        •  one doesn't replace the other (2+ / 0-)
          Recommended by:
          coquiero, Sharon Wraight

          acceptance is built on awareness

          this comment I'm about to make is from a diagnosed 'high functioning' adult, me, who's ended up with some pretty crazy stories, in employment, education, social and personal domains, awareness alone makes me feel like a circus animal, oh, look at the freak, though it's way better than no awareness at all

          acceptance, the ideal, must be preceded by awareness though

          so, you're both right, knock it off :) -- I'm completely confused who to rec!

          •  It's a question of perspective (1+ / 0-)
            Recommended by:
            i saw an old tree today

            I find it hard to believe anyone would consider this a negative or insulting diary.  Big organizations that pay their executives six figure salaries should be ready to cope with criticism.  When people from the represented group (people on the spectrum) make complaints and are immediately labeled "fringe", to me says the organization with the big salaries are not ready for prime time.

            No where in this diary did I say that anything - treatments, organizations, etc - are "bad", per se; I only brought up some new perspectives that are coming into the arena that I think need to be addressed.

            I don't think that makes me either "anti-science" or "fringe".  Talk about insulting...

            We must continue to spread awareness, which needs to go hand in hand with promoting acceptance of autism.  A lot of people don't want to be "cured", I don't think their wishes should be ignored so that a group like Autism Speaks can continue to fund raise off the specter of "epidemic" and "catastrophe".

            I think it's perfectly ok to rec both points of view.  :)

            I blog about my daughter with autism at her website

            by coquiero on Thu Apr 03, 2014 at 12:33:51 PM PDT

            [ Parent ]

            •  You are definitely not anti-science (1+ / 0-)
              Recommended by:
              coquiero

              Seems like that term get flung about on this site a little too much. True science requires an open mind, I've worked and studied with scientists of both closed and open minds, the former is a tragic figure.

              You are however well-informed, raising questions that need to be raised, and forward thinking.

              I'm fairly sure that puts you into a select group!

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