Friday, September 20, 2013

Indistinguishable from peers means: you don't have autism related problems

If you are declared indistinguishable from peers, which, as you may recall, is basically an educational diagnosis, people mistake this for not being Autistic any more. It is presented as such so of course the adults around the "indistinguishable" child act like this is the case, yes?

There are some problems with this. The one I'm talking about today is very practical: what ends up happening when the child inevitably has problems.

An Autistic child is vulnerable to a lot of problems-even an academically at grade level Autistic child. Perhaps especially an academically at grade level Autistic child. We are targeted for bullying by both students and teachers--we are not socially indistinguishable, just academically. We have high rates of anxiety and depression. We, like all people, get frustrated when we are misunderstood or misunderstanding. We have executive functioning difficulties that lead to problems with homework. Even if we are on grade level, we still have difficulties that the language of "indistinguishable from peers" ignores.

So, it's K's overshare time again. I was academically indistinguishable from peers. I have been to a number of psychologists and other people who think they know brains since childhood, because the issues I was having could not possibly be autism! They were everything but autism! Let's see if I can get their NOT AUTISM hypothesis in chronological order:

-I was emotionally immature and bored
-I wanted attention
-I wanted less attention
-"maybe she's still autistic" (that one got fired)
-I wasn't adjusting to my youngest sibling
-I was struggling with my mom & last name donor's divorce
-I was having a personality conflict with my teacher (all of them?)
-I was having a personality conflict with my last name donor's wife (technically true. But it was my fault because I was the child)
-I wasn't as smart as we thought I was
-I was twice as smart as we thought I was
-I wasn't doing homework as a way of seizing control
-I wasn't doing homework because I wanted the attention not getting homework gets
-I wasn't doing homework because of a fear of failing at it
-I was refusing to get along with stepparents and parents because of deep seated resentment of...they were never quite clear
-I was oppositional defiant
-I had ADHD
-I liked the attention being bullied got

And the constant refrain of "the common denominator in all of these problems is you." Constant refrain. The guy who billed himself as a problem solving expert. The guy who said I was too social to have ever been autistic because I had a friend. The guy who I never looked at ever but his name was Mike. All the parental units who were local to me.

The common denominator in all these problems is you.

Turns out adults who were indistinguishable as children have a really high rate of depression and suicide attempts. We tend to run pretty suicidal as children, too. It's logical, isn't it? If the common denominator is us, if we have issues related to a disability that we no longer have, isn't the way to end the problems to take out the common denominator? Everything that goes wrong is a function of bad choices we are making, everyone has a hypothesis on them, but we cannot make them stop because our neurology does not work that way. It is a choice that makes sense and a choice that would make it all just stop.

And that doesn't go away when you turn 18, or when they say "ha ha my bad, autism is lifelong and indistinguishability doesn't mean what everybody thinks it means." Those years of being the least common denominator and of all of those hypotheses being applied to you? They stick. Forever.

The 'residual deficits' that were referred to in Lovaas's 1987 paper are way more life-impacting than anyone wants to believe. You can't sell "we might be able to get your kid educationally mainstreamed, and that kid might end up there anyway, but said kid will still have autistic traits because they are still autistic" the way you can sell "indistinguishability" and just not mentioning it what it actually means. And damn the long term effects. It's not like autistic folks are actually people, but that's another post.


Kelly J Âû said...

Wow, some of this sounds like things my mom still says about both me and my son. Everything we do now is "normal" - it couldn't possibly be Autism. It's wacky what people will do to live in sweet denial. :(

Rekka Riley said...

I had a weird case. Part of it was lack of diagnostic knowledge; they didn't know how both Autism and AD/HD often appeared different in girls. Girls with hyperactivity tend to be "bossy" and "Chatty Cathies" rather than jumping out of their seat and running around, and girls on the Autism spectrum can often mimic behavior but don't necessarily understand why the behavior is happening or when it's supposed to apply...

Anyway, after much frustration and fighting between my parents and teachers (they were upset with my third grade teacher suggesting that I might have ADD, though she turned out to be right), I got diagnosed with AD/HD in senior year of high school (too late to really help there)...and then Autism with co-morbid AD/HD when I was 23 and went in by myself.

Hit the neurodiversity jackpot, I did.

"Indistinguishable" from "normal" people is passing. That's all. It's not any different than a black person who can pass as white. It's something we learned how to do to avoid suspicion.

Getting through school doesn't help us when it comes time to get a job, and dealing with discrimination there. Unlike the schools, the workplace can fire us and just claim some other excuse.

In my case, part of the "oh, those behaviors aren't Autism, they're normal" actually came about because my extended relatives had children whose Autism was more severely pronounced, and they were so used to it that they stopped seeing the behavior as "abnormal." It took them almost ten years to realize I was Autistic, because they just instinctively adapted to my behaviors and it just never occurred to them that it wasn't "normal." It helps that everyone in my sister's family has signs of it, so they know it's genetic and they just adapted to it. :)

chavisory said...

Suicidality also makes total sense when, like...everyone around you has tried to extinguish this version of you. So...

Astrid said...

I can relate to this. I got a lot of these explanations that you got before I was diagnosed as autistic, and even after I was diagnosed as autistic. It is sad that autism is defined in behavioral terms, so th at if you don't meet the behavioral criteria anymore, y ou'r enot classifiable as autistic.

Neurodivergent K said...

One of the points of this series is...that autistic people who were declared indistinguishable DO often still meet the behavioral criteria. We just...can function academically.

That's, like, IT as far as Lovaas's study goes. Successful endpoint was academic function.

Austin Wallace said...

Hi Kassiane,

I thought you might want to contribute to

RespectAbility is a new non-profit whose aim is to raise employment of those with disabilities.

As I'm sure you already know, 70% of Americans with disabilities are unemployed, and services like Vocational Rehab are sorely underfunded.

I am trying to arrange a meeting with the Governor of Georgia to discuss solutions to this problem, and I thought you might want to do the same with your governor.


NewtToad said...

I just want to be me, and be happy. I have so much depression and anxiety. I love my life. I have a great life, living with my Mom and having access to the things that make me happy. But now I'm asking so many "big questions" and it's driving me nuts. I hate that. I just want to focus on my own life and on living as simple and structured as I can and as happy as I can. I love staying home and having routines, and I also love having ideas and thoughts and interests and things I care and feel passionate about. I love being myself; being as free and individualistic as possible.

And I hate this concept of "God." It frightens me utterly. I used to feel contempt, though really I am afraid. I just don't want there to be a God. At least not these mainstream God concepts that hurt me to even think about. And quite possibly this is because I enjoy focusing on the here and now. The here and now is important. I want to live in the present, and not worry about some shitty "afterlife" where I won't even be allowed to be me, if God comes into the equation. I want to exist as I am now. It's a shame that religious zealots have to ruin life for those of us who otherwise wouldn't have believed in God or worried about such things.

Though science leaves me no comforts either. Autistics are somehow "supposed" to be into things like "the future" and space and such-- well, I'm not. I know all too well what the future will bring, if the life we live now is any indication. I've always been interested in history. The past has more appeal to me than the future, in somewhat of a sense. I imagine the comfort living in a more hunter/gatherer society would bring me. I think my brain configuration would be of more use there, before all of this corporate shit and industrialization. I imagine myself living in a time before Agriculture, and it comforts me.

I can't survive in this society because my brain wasn't intended to. I can't be put to work. I'm not some fucking lazy idiot who collects off of the govt at the tax payer's expense. I'm not a leech. I need the govt money because I'm disabled, in the "social model" of the term. Though I have ideas which could be of value, if only someone would listen. I also have self-worth, and I know that I am not a lazy useless burden.

What is happening with the world is atrocious. What they call "progress" and "advancement" makes me sick. And in spite of my lack of belief in "God," I do happen to possess my own sense of spirituality. And I am a vegetarian with such a deep connection to all other species, whether classed as animals, insects, plants, or whatever. I can understand them, and empathize with them. When they hurt, I hurt.

It would be nice to have a blend of the old and the new. Tribalism, for instance, has its drawbacks, such as racism and xenophobia. It's nice to live in a world where we're all connected. And, of course, hunter/gatherers had no choice but to hunt at certain times when there was no other food. That is not the case today. It would be nice to adopt the newer idea, which is Vegetarianism, which would be contingent upon adherence to the old idea of respect and reverence and empathy for nature. And so on and so forth.

I like to have hope. Hope for the best and hope for change. Living in the present and focusing on changing it will lead to a better future. Living the way we are now is ultimately unsustainable in the long run. Though these leaders with their greed are milking everything for what it's worth. It's killing me. It's killing all Autistics. It's killing everyone. We have to fix it.

mouthyb said...

Hey, I think we had all the same diagnoses.

It couldn't possibly have been an abusive family, moving every few years across the globe, and autism. I was the problem. Totally choosing to be the problem. Yep. :-/