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.
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.