Cohabiting with autism.

“Moms living with autism share their stories!” the headline proclaims. I know what it means. I know what it always means. And I know it will provoke some degree of wrath in me, but I click it anyway, because I’m testing my assumption, and because if I don’t keep up my frustration level, I’ll have nothing to blog about.

As usual, “moms living with autism” means “moms of autistic children.” “Autism families” means “families with autistic children.” “Autistic parents” means “parents of autistic children.” “The autism community” means “the parents-of-autistic-children community.” This is problematic on a couple of levels. First, obviously, because it excludes actual autistic people from consideration. The only reason people can say “autistic parents” in the confident understanding that others will know what they mean is because it is near-universally taken for granted that an autistic person cannot be a parent. The exclusion of autistic people from “the autism community” presumes that autistic people cannot be adults or agents of their own lives.

Secondly, the “living with autism” phrasing not only denies autistic people as the subject, it denies them even the status of object. It was the pro-cure movement, after all, which convinced writers and the politically correct that adjectives are insults, but phrases and clauses are sensitive terminology. The straightforward “autistic people” was banished in favor of the clunky “people with autism” or “people who have autism.” It became very important to emphasize that autism was not the autistic person’s primary or sole defining quality; it was, if anything, merely an afterthought. Certainly it was something that could, and should, be removed without affecting one’s fundamental personhood.

So if the purpose of relegating autism to prepositional phrase is to place the person first, why is it so common to drop the person from the sentence altogether? When “moms living with children with autism” is shortened to “moms living with autism,” note who gets dropped. The autistic person, instead of being elevated to a person who happens to have autism, is lowered to merely a personification of an abstract noun. An abstract noun which, according to Autism Speaks (not “People with Autism Speak”) is a child-stealing monster.

This is consistent with the portrayal of autistic people as vacant, their bodies merely shells in which the demon Autism resides. Autism is ugly, we are told, and a kidnapper, and legitimate grounds for murder. Clearly, we can see that, rather than putting the person first, as the convention purports to do, using “autism” exclusively as an abstract noun eliminates the autistic person from the sentence altogether, rendered not only invisible but nonexistent, our real selves “stolen” or “kidnapped” by this demonic abstraction.

I’m not saying anything new here, of course. I never am. All I can do is point out that this is the sort of thing we can easily challenge: autism is not a thing unto itself. One cannot have a jar of autism. The abstract noun exists only in the context of the people it describes. “Autism” can modify us as adjective or phrase or clause, but we are the integral part of the sentence.

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14 Responses to Cohabiting with autism.

  1. Rachel says:

    Awesome post. Very well said, indeed.

  2. Rose says:

    Well, it took a long time to admit it, but I’m coming out on your blog. I am a mother with self-diagnosed autisitc-tendencies. Suddenly, autism isn’t so bad…

    Nah. I’m lucky. I learned to enjoy my son when it occured to me he might not always be with me, and I didn’t want his memories to be of anger and angst, anxiety and fear.

    Actually, for not having the ability to see humor…I find him one of the funniest people I know. Only he, and my mama, can make me dang near wet my pants. I see a difficult, but bright future for him.

    In the parent’s defense, they are being used in order to create a market for professionals/quacks/charlatans/do-gooders, to some degree. And I am sorry for the dismissiveness they sometimes obtain from the ND crowd when their children’s lives are seriously encumbered by their autistic traits. You know what I’m saying. We’ve got to grow up and help. We are uniquely suited to it.

  3. Rose says:

    Sorry…just noticed I could subscribe to this post. I hope I didn’t tick you off too much. I agree with all you are saying, with one caveat: you (we…whatever) need to find a way to bring the parents into the fold. I think the “attention seeking” phase isn’t intentional. And it shouldn’t last if the good of the child is paramount. It’s just that parenting a child with severe autism (which I have never done) is filled with decisions/doubt/crisis most of us will never know, as autists, or as parents. They are autistic families, I think you’d find, mostly because they have this intensity in common. It seperates them from the lily “soccer moms”.

  4. adkyriolexy says:

    You didn’t tick me off. I agree that we need to bring the parents in. But they have to want to come in, too.

  5. Rose says:

    I think we all might be surprised how BIG their hearts are, if those parents of kids with pretty severe problems on the autism-hub are any indication.

  6. adkyriolexy says:

    I know a lot of parents have big hearts. I don’t want to come across as anti-parent. Just anti-autism-parenting-culture.

  7. Rose says:

    anti-autism-parenting-culture…is not helpful when it’s overblown. Now…I began learning about autistics as adults by joining an autism hub, of parents and adult autistics. That was helpful….because it was REAL and it was FREE, and it was PRO-BEN.

    Anti-autism was what I was before that. Non-accepting of who my son was. ANTI-BEN. It doesn’t matter who you hang with if you fail to love your child in a way that helps him to grow. It’s all about growing as a person.

    Now, for years I was all about ND. And this may seem like I am being contradictory, and maybe I am. I’m still processing what I think.

    My mentor was a woman who had 8 children. Her third child. Judy, was quite severely autistic. She had no language. Judy’s family always felt that there was a “chemical missing in her brain that would allow her to talk”…their exact words. They were “pro-cure”, but not in a woo way. They put their faith in science that it would come up with a cure for Judy. She died in an institution, just about a year ago. She was my age (54). Her family treated her like gold. Her mother gave her life to Judy and kids like Judy, teaching handicapped kids long before it was mandated in the public schools in America.

    I am for acceptance. Of my son. Who is mildly handicapped. I think his autism will make it difficult for him to find his place, but if he does, it will be BECAUSE of his autism, not IN SPITE of it.

    But, I can’t judge a parent who longs for their child to speak, who longs for their child to feel at ease in a world which seems dead-set on attacking their senses, their emotions. It may be as simple as a chemical, or lack of it, that could totally change the trajectory of their lives. Have you ever heard of PKU?

    I’m a little hung over, I may not be making a lot of sense….

  8. Pingback: Cohabiting with Autism | Neurodiversity

  9. Anne says:

    Hi there,
    I never knew I was Aspergers until I got an education being a mom of a son who has aspergers. I also have twins that are autistic that are 21. From when they were 3 years old on, they were in school. When they started speech class when they were 3 at the school they went to, they became quite the chatterboxes so fast, it was amazing.
    We didnt know they were autistic until they were 9. We didnt know my younger son with aspergers was aspergers tunil he was 10 when I took him to the psychiatrist my twins go to because I thought he was going to be evaluated for depression. The doctor said he was aspergers and I was shocked, I didnt see it. It took another year for me to say, well yeah, I guess he is because I just always thought he was a carbon copy of his dad in certain ways and had alot of my personality traits in alot of ways. Their dad is undiagnosed Aspergers and is a very successful dentist.
    I always understood my kids because I remembered things when I was growing up. As far as im concerned, we are “specially abled.” 🙂 They are highly intelligent too, they all have their thing that they are good at and do it so well. To me, my kids are awesome and I wouldn’t want it any other way 🙂
    I do understand what you mean about some parents out there, because I know some parents out there like that. It makes me sad 😦

  10. Pingback: One of 104,000, apparently | Kyriolexy

  11. Christian Schaul says:

    New findings published in Pediatrics (Epub ahead of print) by the Kennedy Krieger Institute’s Center for Autism and Related Disorders reveal that 70 percent of children with autism spectrum disorders (ASD) who have a history of severe language delay, achieved phrase or fluent speech by age eight. This suggests that more children presenting with ASD and severe language delay at age four can be expected to make notable language gains than was previously thought. Abnormalities in communication and language are a defining feature of ASD, yet prior research into the factors predicting the age and quality of speech attainment has been limited. *

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