amie2 loves you

“I try to capture all the little fun moments that happen when living with cats. All my little cat comics are done on 4 by 4 post-it notes! My fluffy friends are always a great source of inspiration and entertainment. And best of all they are always there when you need a hug or a good cry.”

The sign is clipped to Peters’ backpack on weekday mornings as she and Deckard make their way, hand in hand, across the city to his behavioural therapy appointment. They take the bus and two trains, followed by a walk. Seventeen subway stops and one train change. When all goes according to plan it takes about an hour. At 3 p.m., they do it all over again to go home. Peters has mixed feelings about labelling her son in public. But last fall, after almost a year of commuting, Deckard started becoming more aggressive in the crowds and delays that plague the TTC. On good days, he was a happy guy with an impish grin and a ton of energy who raced to push the elevator buttons at the station and loved to watch the trains approach. But on bad days when he was overwhelmed, he’d begun to rebel by squealing, kicking or hitting. On the bus one day, a lady told her to control him when he was swinging his legs as they dangled beneath his seat. Other passengers have scolded him and then complained “wow, he’s not even looking at me.” Children with autism often don’t make eye contact. He’s had fits after being knocked over in crowds or being pushed out of the way by passengers clamouring for seats. Peters had to do something to stop the glares, gasps and comments, which would only ratchet up their anxiety levels and exacerbate his behaviour. “Honestly, I don’t always have time to apologize to everyone when I’m in crisis mode,” she says. “I try to, but I have a kid who needs a lot of support.” The homemade sign shifts the dynamic.

No. I’m sorry, but no. And I’m going to try and explain this as best as I can but this sort of thing makes me really frustrated. I know it’s well meaning. It still hurts.

First. I’m going to go on the language. “Has autism” is nasty person first connotations that is language popularized by Autism Speaks, a veritable hate group for autistic folk. Don’t use it unless the person themselves prefers it, but I’m going to be blunt and say majority prefers identity first: autistic person. Autism is not a tote bag.

Second. Behavioural therapy for autistic individuals is a slippery slope that ranges from “useful that helps kids manage emotions” to “Applied Behavioural Analysis” which point blank is conversion therapy for autistic folk. It tries to make them pass as neurotypical via abuse, and often leaves PTSD behind.

FOR REFERENCE she is using ABA techniques in the form of “he gets two M&Ms as a reward for a perfect train ride as an incentive to keep going.” I know this looks/sounds like regular reward based parenting. It’s not, especially when it does not matter how many incentives there are: if a meltdown is going to happen, there will be a meltdown. Eventually. It might not be right then, but it will happen.

The article goes into detail about how he’s undergoing “intervention.” This is an ABA codeword that means “we’re making him look more normal so he integrates into society better.”

This is not a good thing. And should not be treated as such.

Third. The article itself says “with rising autism rates.” No. Autism has exited forever. The myth of the Changeling Child is basically a textbook autism description. Diagnostic rates are going up, because we finally have semi-accurate diagnosis. There is no such thing as increasing autism rates.

Fourth. There are dozens of notes of “tragic autism making my parenting job EVEN HARDER” in this. She treats his meltdowns like crisis mode. She treats his abnormal behaviour as crisis mode. She is making it about herself, how much she wants to cry, how hard it is for her, how her anxiety rises when he has a “bad day.” There is next to nothing about how hard it must be for him. It’s all about “I’m doing this for my child, look at how much work I go through” instead of “my child needs X, so I do it.”

Fifth. His behaviours aren’t “repetitive behaviours.” They are regulatory behaviours. They help him manage his emotions. He doesn’t need a “string of distractions.” He needs a sensory diet to help him self sooth so he can not feel so overwhelmed. They can look very similar, but the fact food is on this list is a red flag for me. Treats are often used as leverage in ABA therapy, because children respond well to them. He should, instead, be allowed to explore whatever stimuli he prefers and be absorbed in something that helps everything feel right.

(Yes, I have been told this. Repeatedly. I have PTSD from so-called “therapy” meant to make me look neurotypical, to the point I have a panic attack if I even show a hint of my autistic behaviours in public because people will leave me if I do)

There’s nothing wrong with helping a person cope with the world! But when your methods say there is only one way of existing, and say if you do things like not maintain eye contact, or flap your hands, or talk about what you love to talk about, then you’ll never “get anywhere” in life— that’s abuse.

I would suggest you look into my ABA therapy tag to see why the wrong type of “integrate into society” rhetoric is so damaging. 

When it comes to autism, most of our behaviours are utterly harmless. So what if we don’t maintain eye contact? It’s an artificial thing to maintain eye contact— it hardly shows up in cultures around the globe. So what if we flap our hands and bounce when we’re happy? We’re so happy we literally can’t contain it and we’re not hurting anyone. So what if we’ll talk about our favourite thing for three hours? We’re trying to share what we love with you (and we can’t tell when you’re uninterested or it’s a bad time— so that’s up to you to tell us!).

Most “autism intervention therapies” assume the autistic person is inhuman, and you have to build a human from scratch by forcing them to behave “appropriately” through physical restraints (a very common ABA practice— you literally hold the child down until they maintain eye contact for x number of seconds, through thrashing and meltdowns and general resistance because maintaining eye contact hurts) then reward them like a dog for doing what you want.

If the goal is to genuinely help the person cope, great! If her method of helping him navigate was to help him find toys that helped make the world less loud, that’d be 100% fine. But it’s to have him stop bothering people and have him quietly sit through the whole ride regardless of what he’s feeling. That’s not fine.

So I actually work in mental health. As an example, someone might hear voices and respond to them but also aren’t harming others. In this case, I find it a balance of “yah, ideally you’d talk to yourself and no one would be bothered by it” but sometimes people have called police JUST seeing someone do this kind of self talk, or responding to internal stimulus. Helping someone understand how their behaviours can appear to others while allowing Them space to express themselves is a fine balance. Personally, I’m of the opinion that if it doesn’t bother you, I won’t intervene…but if it is getting in the way of you taking the bus or going to work, we should definitely talk about how your actions affect people around you and come up with ways to problem solve. The goal can be to integrate with society, but I guess a major difference too is thst I work with consenting adults.

And, also, just to clarify: I’m not against teaching people awareness of how their behaviours impact others. But there’s a difference between “if you don’t bother strangers you get a treat” and explaining how other people have a right to privacy and most of them don’t want to talk or be disturbed so you should redirect your attention to quiet things.