June 2017


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Jan. 13th, 2016

In 2013 an autistic woman wrote an essay called “You Should Tell Your Kids That They’re Autistic. It’s a good piece. I’ve shared it with my department and printed out a copy to hand to some parents of patients. I linked to it awhile back in my piece, “Label your kids – and your cans.”

In it, she outlines the reasons why autistic children should be told about their autism. She points out that many autistic children sense difference early and that we owe these children a name for their difference. She talks about the benefit of community. She appeals to the right of people to know information about themselves. She notes that she has met multiple autistic people who were diagnosed as children but did not find out until much later, and who resented having this information withheld from them.

It’s a good piece, worth reading. But that’s not what I want to talk about today.

The piece was linked on a website yesterday, one read mainly by non-autistic parents of autistic children, but with a relatively large autistic readership compared to some such sites. And it’s received comments. A lot of comments. The comments fall into predictable patterns.

That’s what I want to talk about.

Overall, the comments fall into 3 main categories.

1) Comments from autistic people agreeing with the author

2) Comments from non-autistic people disagreeing with the author. (More on this group later.)

3) Comments from people stating that they are “children with autism,” rather than “autistic.” (More on this group later too.)

A thing I hear a bunch in the autistic community is that autistic people have good pattern recognition. This is. . . probably an oversimplification. Some autistic people are exquisitely attuned to pick up on subtle patterns. Some are probably better at noticing visual patterns, some verbal, some mathematical, and there are probably a good number of autistics who aren’t terribly pattern-oriented at all. And there are likely a lot of autistic people who resort to pattern analysis to figure out aspects of the world that are not intuitive.

But the comments on this article definitely resonated with me as fitting into a very common pattern of interaction between autistic and otherwise disabled advocates and non-disabled parents of children with disabilities. It’s a pattern. It’s not all autistics. It’s not all parents. But it happens a lot.

Note that the author, while stating her own opinions, is not just describing her experience. In her piece she notes the perspectives of multiple other autistics. And there are multiple comments from other autistic people agreeing with her that the piece reflects their experiences, their desires, their perspectives.

The people posting disagreeing with the author have presumably read the article. Perhaps they just responded to the title. But let’s presume they read the article. Then they read the comments from multiple autistics agreeing with the article in light of their childhood selves. And they disagree.

My child is too young to understand.

I don’t want my child to use it as an excuse.

My child doesn’t recognize he’s different.

My child is too disabled to understand.

Maybe if he asks when he’s older.

I tried and my child hates the fact he’s autistic and doesn’t want to talk about it. (To this I ask, has he been exposed to any explanation or portrayal of autism that is not negative? Has he been exposed to the notion of autistic community or met any older children, teens or adults who are autistic and proud? Did you sit him down for The Talk as though you were disclosing something secret and scary and awful? If not than you haven’t given your kid a chance to have an honest opinion about autism.)

The pattern that interests me here is that none of these responses seem to consider that the responders in the first group were likely similar as children to the children who supposedly can’t understand, would use it as an excuse and don’t recognize their differences. Those first responders who are saying, I recognized a difference, I wanted the words to describe it, and if one is truly unable to do something due to disability, it’s not an excuse.

Then there are the commenters who take exception to the self-descriptor “autistic.”

“They are children with autism”

“I don’t want my child to identify as autistic”

“They are so much more than autism.”

“My professional training program taught me to say Person With so that’s the respectful thing to say.”

Again, one of the first patterns I notice is that these commenters are talking about “they” and completely ignoring the fact that the author is talking about “I.” In some cases, there is no concept of the idea that “autistic” might be a carefully chosen descriptor, not an ignorant mistake. In others, it is repeatedly argued that it is more respectful to adhere to professional guidelines written by non-autistic people than to use the term preferred by the individual.

(Sidenote for those who don’t know the history: Person First [or Person With Disability] did come from the disability community. Many PWD – people with disabilities – advocated for its use as an improvement over “the Downs kid” or “the crippled woman.” There are many people with disabilities who prefer it, particularly people with intellectual disabilities. There are people who autism who prefer “person with autism,” also. But there are many autistics who understand all about Person First and have rejected it for themselves. There are a lot of reasons, including "Autism Is Not An Accessory" and Ari Ne’eman's assertion that the airline may lose his luggage but he doesn’t arrive "without my autism." There are also a growing number of non-autistic disabled people who have rejected it.)

Some choose to argue that autism doesn’t define people, in general, and certainly not their child, in particular. A common counter argument is that we don’t have that concern with descriptors considered more neutral. We don’t worry that describing someone as “brown eyed” will cause them to define themselves solely with their eye color. We recognize that people can be many things and some of those things can be adjectives.

And so I see the argument and the counter argument, and it again fascinates me. Autistic people saying, “I’m autistic for reasons” and often “I’m Autistic and Proud for reasons” and then people presumably reading this and then proceeding to explain all the reasons why Person With Autism is the only respectful way to talk about their child, the adult to whom they are speaking, and any other person.

But it’s not about this post and its comments. It’s about the pattern.

A few weeks ago, someone posted something on a disability-related site about meltdowns, making it into a Bingo Game. The someone posting was actually an autistic parent posting about her autistic child. Many many many autistic and otherwise disabled people wrote in protest about the piece, how it centered the person watching the meltdown over the feelings of the person having the meltdown. Many many many non-disabled parents of autistic children commented about how much the piece spoke to them and how horrible meltdowns are for the person watching them.

It made the Washington Post. But no matter if you blinked and missed it. It happened the week before, and the week after. It’s been happening for years.

A parent posts a piece about a disabled child, sharing all sorts of details. Disabled people bring up concerns about violation of privacy. Parents respond that their child is too disabled to understand privacy, and they need support and for people to understand how hard it is.

Who remembers Ashley? Ashley X was a girl with a significant disability who was given treatment to stop her growth. In 2007 her doctors wrote an article advocating more widespread use of the Ashley Treatment. It hit the press. Disabled people wrote in, horrified. Non-disabled parents of disabled children wrote in about how no one understands what it’s like. To be the parent. They said the disabled people weren’t disabled enough to understand what it was like to be the child.

It’s a pattern. Over and over. Disabled adults talking about their past as disabled children, describing, clearly, what helped them and what harmed them. Parents of similarly disabled children asserting the reasons they continue to do the things described as harmful or refuse to do the things described as helpful. Parents of similarly disabled children unable to recognize the similarities between the disabled adults and their disabled children.

The autistic community has a name for it, Not Like My Child, and has started a blog detailing the ways We Are Like Your Child.

So it’s a pattern.

I work with parents of disabled children. Oh, officially, I take care of disabled children. Children with disabilities. But a lot of this care involves working with their parents. I get a lot of the history from parents. I explain test results to parents. I give medical advice to parents. I include my patients as much as possible, but I have to work with parents.

And really, in a lot of ways, I like working with parents.

Maybe I like having the notion I can influence parents.

Mostly the parents of my patients do not know I’m disabled. They see me as Like Them. They don’t fathom all the ways I am more Like Their Child.

Sometimes I share bits of myself, about my difficulty with handwriting, about my loathing of vacation. More often I share bits more impersonally, from the disability community. I quote autistic and otherwise disabled adults. I recommend essays and books written by disabled adults. Please don’t force your kid to make eye contact, I say. Many autistic adults report it makes it harder for them to focus and some find it downright painful. Don’t make your kid stop flapping his hands. Lots of autistic people talk about all the benefits of stimming. Your behavioral therapist will disagree with me, I say. But I’m telling you what lots of people who were like your child as a kid wish their parents had known. Adults with CP often wish less of their childhood had been spent focused on walking, I say. And so on.

Pattern recognition being what it is, I know I will say it over and over.

It’s the only thing I can do to try to break the pattern.
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