In other words, we should be denied “medical access” to our “people” because we’re “passing” for neurotypicals. Let that sink in. Now, let’s change it up. A Deaf person goes in for a diagnosis and is never told he is Deaf so his Deafness is irrelevant and might hurt his feelings if he knew. After all, he’s successful at navigating in a society not made for him. Or worse: a Black person is denied that she is Black because she does just fine in the dominant, white society and to be told she is Black might make her feel sad.
This is ridiculous, right?
Earlier, I posted how diagnosis should be a choice and I believe that still, however, it is probably good to unpack a few things here.
I was talking to a work friend about my son, when my husband and I were finally were coming to terms with the fact that my son might be Autistic.
She wrote me that she had heard from one of her Autistic son’s therapists that you just know. You know when the other mothers have all moved on to worry about whether their kids are eating a healthy diet, and you’re stuck back on “will he talk?” or are just happy that he’s eating anything. You know when the other parents have birthday parties and can drop their kids off without worry, and you’re frightened that if you don’t hover something will happen. You know when your child is in a pre-school or Kindergarten class, and he or she has been reading since at least the age of 2 or 3 and is forced to learn “colors” and “the alphabet,” yet his or her favorite words to read are long ones, dealing with the mythology behind the current superhero, rock, or dinosaur interest.
There are many different things that could be signs, but you know when you’re not worried about the “right” things, the things the other parents seem to be concerned about.
But some of us don’t know until late. You know in middle school, when your daughter doesn’t have any friends and can’t seem to navigate the social structures. You know when she gets quieter, and withdraws more and more into her books and/or special interests.
The little voice in me finally started to speak; actually, she screamed during this #BoycottToSiri saga that’s been going on lately.
The little voice that is me had already been complaining considerably while I was writing my paper to end the semester. I knocked the thing out pretty quickly and it’s fine; it answered my questions, and I did okay. But I hated every minute of writing that academic paper.
In general, the puzzle piece symbol is offensiveto Autistics because it focuses on the image of someone being “broken” when people are never broken. I’ve got an alternative take on the puzzle that I’d like to run past you. I think this image is more appropriate for all types of “divergence.”
Envision this: every human being gets a puzzle, at conception (or birth for those of you who insist it comes later). Each puzzle is slightly different, of course, because all of us are different people, but we all get a puzzle. Some of us get 100-piece puzzles, others 1,000-piece, but everyone gets a puzzle.
Here’s the problem for people like me who got a big puzzle.
In Western culture, as women, we are expected to do it all. We are expected to work outside the home full-time because if we don’t, we’ve betrayed the feminist cause. We’re also supposed to be perfect mothers, raising our children in perfectly clean homes being fed perfectly balanced meals or we’re a bad mother. When we get tired about all this and ignore our husbands, we’re bad wives.
The rules also tell us we really ought to be going onto school to get a degree, then an advanced one. This will not only empower us, but we will advance in our careers.
But if we advance in our careers, who will care for our homes, children, and husbands?
In this way, women in general are overwhelmed in our culture.
But let’s add Autism into the mix.
As an Autistic mother of an Autistic child, I had a lot of problems when I dragged my kid in public because that’s what you do.
I worried that he’d run around. I worried he’d run away. I’d worry people were judging me because of my kid and whatever it would be that he’d do.
And I’d get insanely pissed off at things like how the library has all these self-checkouts which are supposed to be “helpful” but unless you have a kid who wants to help you check out books, you cannot both mind a child AND do your own checking out.
Unless you let watching the child go.
That seems to be the path neurotypicals around me were taking. They just figured, they were kids and they’d do what they did.
Of course, their kids running around doing whatever they want annoyed me, giving me sensory overload, while I was trying to manage my own son’s sensory overload because of their kids running around causing all the drama.
But for some reason they didn’t ever seem to worry about what people thought about their kids running around like little monsters.
They didn’t seem to, or have to, worry that someone might come to their home to take their child away because their child was being raised by a Disabled parent.
That is a thing, you know. In some states simply being Disabled is enough for child welfare to take your kids from you.
And they could move on after the wretched experience at the library and not obsess over it, thinking and planning about how it would be better the next time if I only…
See, one of the gifts-that-can-be-a-curse about Autism in women is we’re super-empathetic. Many of us can literally sense all the feelings around us and we cannot shut them out. You know all the old people at the library by which I mean all of the adults who do not have kids with them? They’re all judging you because you’re not minding your kids and letting them run around.
We feel that; neurotypicals shut it out.
Unfortunately we also obsess over things: we plan conversations for hours before we have them, and we mull over things that happen to us over and over again, trying to figure out what it was that we did wrong.
Because we learned a long time ago, that WE did wrong. It’s always us.
A parent of a former student called me to check in. He’s had a hard time since he left. I agreed to talk to the psychologist about our experiences with him.
I can’t reveal too much (as usual!) about the details, but suffice it to say, if I believed in functional labels (high-functioning/low-functioning), I would say, absolutely, that he was a “high-functioning” Autistic (for new people to the site, I DO NOT BELIEVE in these labels, but I will say he is very skilled at masking; the labels I only mention to serve a point as to how people who others believe are “high functioning” can be overlooked even though there is no such thing as “high functioning”). He’s been skilled at masking his Autism since he was in a tiny school until this year, and as the demands of moving into the tween years get harder, he’s struggling in and out of school. He’s one of those problematic types who is both academically gifted and Disabled, which the public schools have historically had a heck of a time with.
The psychologist was not impressed with my observations. I suspect she will discount them, not recognizing what it looks like to be an Autistic who does not have “Educational Autism” (fancy language in schools for “too good at school to get help”). Without a corresponding academic struggle, he will not be diagnosed and they will continue to wonder what’s “wrong” with him.
But I know him. I knew him last year, and I also knew that his mom wanted him to stay with us this year since she knew he was finally, finally making progress both academically and socially. He struggled at school for years not because he didn’t know all the things but because he lacked the executive function to turn materials in, or the impulse control to do what he was told.
He made so much progress he was three years ahead on standardized tests by the time I was done with him…in less than a year.
And yes, we were actually able to measure him on standardized tests; I’d reduced the stress enough that he was taking them seriously and able to focus on them.
Lest you think I’m bragging about being a miracle worker, let’s be perfectly clear: I didn’t DO anything…but I let him be himself and reduced his stress levels. I removed the meaningless hoops of homework for the sake of homework and requiring my kids to sit in a desk, not move, and not talk. And I listened to him, and argued and debated with him.
This is an edited version of a piece I wrote a year ago, around this time. It still holds (and irritatingly, I keep seeing Tweets from fellow Autistics that we would “get along” better if we’d stop promoting Neurodiversity) even if the specifics are different now.
I was going to write a little post about “random thoughts” and they sort of congealed, when I also thought about The Silent Wave’s post about Neurodiversity yesterday. I’ve written in the past that I believe that Autism (or really any part of Neurodiversity) is not in itself a problem. An exception I can think of is perhaps schizophrenia, and even then, it’s only an issue when the voices want you to harm yourself or others. The voices themselves may or may not be harmful otherwise (but this is an area of the Neurodiversity tree I don’t know as well, so I may be wrong on that). I’ve blogged about the Social Model of Disability before, and it bears peeking at if you don’t know the difference between the Social and Medical models of the world. The TLDR reason is that Disability is not a problem; SOCIETY is the problem and until society stops presenting barriers, we will remain disabled. The classic example is someone in a wheelchair is not “disabled” until he or she cannot find the stairs. That’s what society did, not the Creator. So once you start seeing the world as the problem, not you, you do get a whole lot more positive about Disability.
So, here are my random thoughts that somehow connect to this: