Sunday, October 14, 2012

Am I a Bully--My Thoughts on Self-Advocacy and Neurodiversity

 If you spend as much time as I do reading articles of interest to the autism community, you have no doubt seen the comments posted by the self-advocates—adults with Asperger’s syndrome who are high-functioning and take umbrage at us autism moms wanting to “cure” our children.  They equate our wanting to help ease our children’s very real suffering with wanting to eradicate autistic people.

I feel compelled to respond to the self-advocates who think they alone can speak for autism, and I often do. Some of them are quite eloquent, others quite childish but all have a complete certitude they are the legitimate voices of autism--they are “on the spectrum”, after all.  We parents who do not embrace what they call “neurodiversity acceptance” do not fully love and appreciate our children.  

So I respond to their comments…and I sometimes feel like a bully, because even those who write effectively still have a faulty logic and frankly, just a poor grasp of the facts of autism our severely affected children deal with on a daily basis. They believe their form of autism is what is experienced by all autistics, despite parents describing the suffering experienced by their children—seizures, severe gut issues, autoimmune disorders, food allergies, etc.

Last month I had the opportunity to meet the granddaddy of self-advocates, New York Times best-selling author John Elder Robison and hear him give a talk. He is also a member of the Interagency Autism Coordinating Committee (IACC), a federal advisory committee that supposedly exists to “coordinate all efforts within the Department of Health and Human Service concerning autism spectrum disorders”.  I suspect the IACC believes autism is well represented by having Mr. Robison as a member. He is articulate and was diagnosed with Asperger’s at the age of 40. He is a successful business owner and a best-selling author. Having an Aspie as a member checks the block of autism representation.

Mr. Robison spoke of “remediating the disability” without changing what makes autistics autistic. I’m not sure what is meant by that—he spoke about the problems he had in getting and keeping a job, and that even with his superior intelligence, he is unable to navigate the landmines of socially-acceptable behaviors in the workplace. Without evidence, he says only a “fortunate few” persons with Asperger’s are able to work independently. I say he’s never met the mathematicians and computer scientists I’ve worked with. I also believe he equates superior intelligence with Asperger’s, as if one cannot exist without the other.

He states that autistics have given the world so much, and I don’t doubt this to be true—not at all. But at the same time I got a similar impression from him I do from the self-advocates I meet on the internet...that the autistic brain is superior and therefore they don’t need to “be fixed”.  I don’t know that I disagree about needing to be fixed—many people I’ve met with Asperger’s are in fact highly intelligent. That said, I know many more people who don’t have Asperger’s who are quite bright. 

Mr. Robison went on to tell the audience, filled with parents of autistic children, that autism is purely genetic and we are what he terms, “Protoautistic”, that we exhibit some autistic behaviors without being autistic ourselves. He says his brain when scanned would look the same as one of our non-verbal autistic kids. Frankly, I don’t believe him.

He went on to say that although we believe our children started out normal, they would tell us (if only they could) that they were always autistic. Again, I don’t believe him.

So I approached Mr. Robison after his talk and told him I have two sons on the autism spectrum. My oldest, Eric, has Asperger’s and like Mr. Robison is highly intelligent, handsome and very talented. Once he discovered the opposite sex, he wanted very much to develop the necessary social skills to fit in, and for the most part has succeeded. Except for some quirks and a sometimes overly-literal language comprehension, he’s a pretty typical 17 year old. I’m not worried about Eric.

                                                                Eric with Ryan

On the other end of the spectrum is Ryan, almost 5…communicates on the level of a 12 to 18 month old, and is only now regaining the ability to say some words—and it takes great effort to get him to speak even a word or two. He is not fully potty-trained. He has gut issues, is allergic to 109 of 110 foods he was tested for, has an autoimmune condition that causes nasty rashes and depigmentation of his skin, and he suffers from tics that cause his upper body to shake uncontrollably.

I told Mr. Robison about my sons…and I told him I would agree that Eric was “always that way”. He was a miserable, colicky baby who became a tantruming toddler who then became an unhappy little boy who had meltdowns of nuclear proportions simply from a routine change or being asked to do something he didn’t want to do. Christmas was stressful because if he hadn’t specifically asked for something we bought him, he would sulk, throw his present purposefully in the corner and refuse to have anything to do with it for 3 months—what my husband and I called “The Cleansing Period”. He didn’t become someone we enjoyed being around until 2 or 3 years ago.

Ryan, I told him, is different. I look at pictures of him smiling happily in the camera and compare them to recent pictures where he has “autism eyes”—other autism parents know the glazed-over, not-quite-there look I’m referring to. He developed normally and could say a few words by the time he was a year old. He sat up early, crawled and walked right on time…he was social. He was not “always that way”.

I think Mr. Robison, and the other self-advocates preaching “neurodiversity”—despite being on the spectrum—really do not understand what we autism parents want to cure. Just the fact they can get up and give a talk or type a snarky response to a blog article about parents wanting to wipe out autistics tells me they have little to no idea what our kids are enduring.

I’m sure Mr. Robison means well, but IMHO, a New York Times bestselling author has no business representing the autism community as if brilliant writers are somehow the norm among autistics. The ideas he preaches are a bit scary to me and to the other parents who were in the audience, as well. He thinks the lack of social graces are the biggest issue facing autistic people…that they can’t get and keep jobs due to breaches of professional etiquette. He and the clearly high-functioning folks on-line railing against autism parents who want to recover their children simply HAVE NO CLUE.

So I will continue to confront the self-advocates on-line, even though I sometimes feel like I’m arguing with a recalcitrant 12 year old. Perhaps that makes me a bully, but a well-meaning one.


  1. If my mother described me this way in a public place, and I saw it, I don't think I would ever recover:

    "He was a miserable, colicky baby who became a tantruming toddler who then became an unhappy little boy who had meltdowns of nuclear proportions simply from a routine change or being asked to do something he didn’t want to do. Christmas was stressful because if he hadn’t specifically asked for something we bought him, he would sulk, throw his present purposefully in the corner and refuse to have anything to do with it for 3 months—what my husband and I called “The Cleansing Period”. He didn’t become someone we enjoyed being around until 2 or 3 years ago."

  2. Thank you for your comment, Landon. Eric is a wonderful kid today but his early childhood was difficult. My point was simply that Eric always did exhibit traits which are associated with Asperger's--perhaps I should have mentioned some of the positive traits, as well, but if you've ever read any of my previous pieces, I do write about Eric's good traits, too and he is a brilliant young man who can hold his own discussing military affairs and world history with a college professor.

    Ryan, however, developed typically and was not always autistic. He became very ill with many of the real medical ailments that are associated with classical autism. Seeing his physical challenges and his struggle to speak is very hard.

    I wish you well...Janet

  3. I'm not sure I understand what your disagreement is with me. In my talk, I said I strongly support the development of tools, treatments, and therapies to help both your sons, recognizing that their needs are very different. In that regard, I am advocating for both your children and their very different needs as effectively as I am able. At the same time, I am aware of a special responsibility to kids like your younger, who cannot advocate effectively for themselves.

    I also understand that parents of severely disabled kids long for a "cure" but such a thing is simply not in the offing with the current state of science. You yourself acknowledge the contributions autistic have made to the world and you presumably believe the world is better for our existence. The idea that we can keep the gifted, eccentric side while eradicating the more disabled side sounds good to some people but it may well be a situation where we must accept the bad in order to get the good, and the best we can do is minimize the bad components. However, none of us really know the answer to that question.

    I'd like to think it's enough that people like me want better lives for all autistic people, wherever they may fall on the IQ, job skills, health or whatever spectrums. That's what scientists work toward - remediating disability step by step in pursuit of better lives.

    I have no argument with your observation that some children like your Ryan experienced a substantial regression. As I've said elsewhere, the reasons for that sort of thing remain a mystery. As to whether he always had a predisposition for autism . . . we cannot know that because, in your own words, you believed him to be developing normally until the regression and so there was no perceived need for testing prior to that moment.

    However, what we can say is that situations like yours - where you have several children and more than one are touched my autism - are very common. We can also say that the majority of autistic people have relatives with autistic traits - either autism or the broader autistic phenotype - what I called pro to-Aspergian. It sounds like you found that an offensive generalization but I assure you it is not, and it it rooted in the results of quite a few studies.

    This post certainly sounds like you want to confront me about something but I am not sure what specifically I am failing to advocate for, for either of your children. If you want to name something I'm ready to listen. Furthermore, the idea that I am not a good representative for your children might better be addressed by nominating someone yourself or another to serve on IACC and elsewhere alongside people like me. Nothing stands in your way if you want to do that; I encourage you to invest the time and volunteer and let that take you where it may on your merits.

    1. Thank you for your comment, John. I am frankly surprised and honored you stopped by to read my blog. I have no doubt you are a fine representative for the Asperger's community but in hearing you speak (and reading the writings of other Aspies), I feel you equate your experience with those of our severely impacted children. The fact that you are able to type, write and speak eloquently, puts you in a whole different class.

      You are to be admired for all you have achieved--incredible accomplishments for anyone, NT or otherwise. You are a role model for the Asperger's community, but you are not representative of what I (or the other autism parents you spoke to that day) experience on a daily basis with our children. My concern, and I believe it is shared by other parents who have severely autistic children, is that the IACC will see you as the face of autism. I read comments by many who think autistics are simply quirky, "Rainman-esque" geniuses whose biggest problem is being a social misfit.

      I don't wish to confront you as much as enlighten you. Our kids are very sick--gut issues, co-morbid epileptic seizures, autoimmune disorders, severe allergy, inability to speak or communicate, awkwardness is the least of my youngest son's problems. He's not even aware of other people most of the time.

      As far as the IACC goes, I would be delighted to serve...if you know how I can go about doing that I would be more than willing to make the time.

      I hope you don't feel that I am picking on you--I am glad you want to be out front for autism issues. We need awareness, and you are certainly well-known. But you are also a very capable individual and someone needs to speak for the kids who can't speak for themselves.

      Warm Regards, Janet

  4. "Mr. Robison spoke of “remediating the disability” without changing what makes autistics autistic. I’m not sure what is meant by that"

    I can't address what JER means when he says that, because I am not him. But here is what I mean when I say similar things:

  5. Thanks for your comment. I read your piece and enjoyed it very much. I suppose because I am NT, I look at things differently, but I don't believe autism has to accompany genius or a good memory. I don't know these traits are necessarily autism. But I also see many differences in Asperger's and the autism as experienced by my youngest son--so perhaps some of my oldest son's brilliance can be attributed to Asperger's.

  6. Hey, Janet, I see what you mean about some kids being very sick. I think the thing to bear in mind though is that GI issues and seizures isn't autism. Being aware of what is and what isn't autism is important.

    I think you might also benefit from reading this:

    Also, brushing up on the social model of disability.might help.

    And no, it doesn't have to accompany genius or a good memory. Neither does NTism but no-one's trying to not make you NT.

    The medical model would say: Why do so many kids with Autism have GI issues and seizures?

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