Thread by @shannonrosa

Sometimes it's hard to be the parent my #autistic son needs me to be, & I’m always learning about best & better practices. But I wish the research that could help him was better, too.

This is going to be a thread based on a recent @AutismOAR post:

researchautism.org/striving-to-be…

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@AutismOAR How is it that my #autistic son is nineteen years old? How is he not still the cute little dude who used to fit on my lap; how is it that he is now so much bigger than me that I am now wearing his hand-me-downs? #parenting #autism #Neurodiversity

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@AutismOAR Time flies just as fast when parenting an autistic child as with any child, which is a truism I wish I’d been told when my son was diagnosed as autistic almost sixteen years ago. What else have I discovered about raising an autistic child? 3/

@AutismOAR I never realized there were so many forms of communication besides conversational speech. My otherwise minimally-speaking son is fluent in scripting (wielding pre-prepared words and statements) and echolalia (repeating word and phrases, either immediately or with time-delay). 4/

Both scripting and echolalia are valid ways for my #autistic son to express himself and get his points across, and in my opinion they should have wider recognition as natural and therefore valid autistic communication styles. #Neurodiversity 5/

My son also uses a symbol-to-speech AAC (augmentative and alternative communication) device, because sometimes talking in any form is hard—especially when he is not well, or he’s had a hard day, or he’s overwhelmed. 6/

(although sometimes, being a cheeky teen, he will also use his AAC device to try to argue with us over requests that have been denied verbally, because he knows that his AAC requests have extra clout).

#autism #AAC #Neurodiversity 7/

I’m glad my #autistic son has so many communication options, but I’m still not convinced he has as many resources as he needs, and I’d like to see more research in this area. (Ahem, @AutismINSAR.)

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Another thing about parenting my #autistic son: I had to get past a deep-seated fear of medications, which I think is something a lot of parents like me still struggle with. 9/

Autism research hasn’t uncovered as much about meds & autism as we need to know, but we have so much evidence that many #autistic people struggle with anxiety &/or functioning in a world that feels like a constant assault. We also know that for many autistics, meds can help. 10/

I worry that there are too many #autistic kids who don’t get meds that could benefit them purely because of stigma, just as I worry about autistic kids getting put on medications as a form of restraint or behavioral control rather than for helping with specific needs. 11/

Meds shouldn't usually be a 1st line of approach, & they must be approached carefully in autistic people because of the (understudied) tendency for atypical/paradoxical reactions. But I wish parents would approach meds the way they should approach ANY supports: thoughtfully. 12/

I wish I’d known from the get-go that stimming (repetitive, self-stimulating movements) can be healthy and a natural, innate way to self-regulate.

(I really, really wish every parent of an autistic kid knew this.) 13/

We were told that my son’s stimming would make him stand out & that we should suppress it. So he was miserable, & he acted like he was miserable. Now we have a house full of stim toys & only try to redirect/relocate him if he’s being disruptive. He & we are now much happier. 14/

And I realize that some stims can be self-injurious, but I also know there is usually a medical or environmental reason why, as aggression and self-injury aren’t specifically #autistic traits. I also realize that not all physical crises are solvable. 15/

But I do worry about how many parents, like me, are taught to grapple with or “extinguish” what some professionals term “#autistic behaviors,” instead of figuring out if those behaviors have a physical or medical cause, like scratchy tags or flickering lights. 16/

What if your #autistic kid is hitting their head because they have a tension headache, or because the class air conditioning produces a frequency that no one but them can hear, but which is painful to their ears? Focusing on the “autistic behavior" not the cause is SO UNFAIR. 17/

Finally, I’ve become aware that #autistic processing time is a thing. It is amazing how, if you give my son a beat or two to absorb what you are telling him, things click. If you demand an immediate response from him, though, things may not go so well. 18/

So much of the way autistic kids are taught does not consider the common #autistic need for processing time. Maybe we can consider how upset non-autistic ppl get when rushed into important decisions & be more empathetic towards autistic ppl who might feel rushed all the time? 19/

It’s also important to note that, while I feel I have learned so much about how to be a better parent for my son, I still feel at a loss much of the time. In part this is because I am not #autistic myself and therefore don’t understand a lot of his experiences intuitively. 20/

(Although please note that a parent being #autistic isn’t a magic autism parenting solution any more than being the non-autistic parent of a non-autistic kid is. PARENTING IS HARD.) #Neurodiversity 21/

But mostly, I feel we are only starting to do right by autistic people in the areas of research, schooling, parent education, and supports. I look forward to a future in which parents like me don’t have such a steep learning curve when it comes to parenting #autistic kids.

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