Striving to Be the Parent My Autistic Son Deserves
October 09, 2019
How is it that my autistic son will be nineteen years old next month? 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? 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?
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). Both are valid ways 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.
He 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 (although sometimes, being a cheeky teen, he will also use his device to try to argue with us over requests that have been denied verbally, because he knows that his AAC requests have extra clout). I’m glad he 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.
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. Though autism research hasn’t uncovered as much about medications and autism as we need to know, we have considerable evidence that many autistic people struggle with anxiety and/or functioning in a world that feels like a constant supercharged assault. We also know that for many autistic people, medication can help.
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. I don’t think meds should usually be a first line of approach, and they have to be approached especially carefully in autistic people because of the (understudied) tendency for atypical and paradoxical reactions (anecdotally, many autistic people find Benadryl to be a stimulant and caffeine to be a sedative). But I wish parents would approach meds the way they approach any supports: thoughtfully, and judiciously.
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. We were initially told that my son’s stimming would make him stand out and that we should suppress it. That made him miserable, and he acted like he was miserable. Now we have a house full of stim objects and only try to redirect or relocate him if he’s being disruptive. He and we are now much happier.
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. 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 than figuring out if those behaviors have a physical or medical cause, like scratchy tags or flickering lights. What if your child is hitting their head because they have a tension headache, or because the classroom air conditioning produces a frequency that no one but your child can hear, but which is painful to their ears?
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. Yet so much of the way autistic children are taught, especially in drill-based settings, does not consider the very common autistic need for processing time. Maybe we can consider how upset non-autistic people get by being rushed into important decisions, and be more empathetic towards autistic people who might feel rushed all the time?
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 the way so many autistic parents of autistic children do (although being autistic isn’t a magic autism parenting solution any more than being the non-autistic parent of a non-autistic kid is), and also because 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.
About the Author
Shannon Des Roches Rosa is the senior editor of Thinking Person’s Guide to Autism, which is an online autism information nexus, community, and book. She is also the parent of three teenagers, including her very awesome high-support autistic son. You can follow her on Twitter @shannonrosa.