I’m getting a little tired on all the focus and portrayal of “martyrdom” of the autistic parent. I feel like it sends the message that autism is a burden. Yes, visually this is what it feels like as a parent after a meltdown.
But as someone who has experienced meltdowns via bipolar, I can guarantee the experience is much more traumatic for the person who is melting down. Memes like this may help an au-parent feel less isolated, or give them comfort that they are not the only one feeling like this, but they also spread the message that autism is a negative thing. My son has meltdowns too, and sometimes I need someone to talk to who understands. But I choose not to share these sort of memes or announce when something goes awry.
That doesn’t mean I don’t share with a close friend or family member something that was hard. But it is our job to clear space in the world for our children as future autistic adults. Sharing memes and posting, or talking about the hard parts about raising a child with autism to people who don’t have the same connection with your child as you do, perpetuates the stigma that autism is something to be feared, and worse case- it propels the ignorant belief that we should be looking for a cure. Memes like the one above do not help our quest for neorodiversity acceptance.
I believe a lot of au-parents get a sense of superiority when they publicly focus on the difficulties of raising an autistic child. The idea that they are suffering more then everyone else, the belief that nobody could possibly understand. Perhaps that makes them feel special. Perhaps that brings in a lot of sympathetic condolences, attention and praise for being such a trooper. But guess what, I promise raising me was just as turbulent as raising a child with autism. *
You can look at your “low or high” functioning autistic child and focus on everything they can’t do, and emphasize how hard it is to deal with. Or you can focus on what they can do and realize they can’t be compared to the standard picture of development. Like the quote “if you judge a fish by it’s ability to climb a tree” my child isn’t typical, so to compare him to a typical child is nonsense. And doing so would invalidate the accomplishments and progress he has and is making.
Being an au-parent doesn’t make me heroic. Please don’t ever feel sorry for me that I’m raising an autistic child. If anything envy me, because I have the opportunity to experience something very special. The hard times are hard, but autism does not hold a monopoly on hardships. I’ll never be an expert on autism, and neither will the most highly regarded “autism expert” because the reality is that a neorotypical only knows what they observe, no one will ever fully understand autism except for autistics themselves. You can support neorodiversity by reading blogs, books, articles, written by autistics. The stories, opinions, and perspectives will vary, but you are glimpsing into a world that no neorotypical can explain quite like an autistic. If my autistic son never talks, or wears diapers for the rest of his life, does that make him less than? There is a spirit inside these people, no matter where they fall on the spectrum, and it’s just as valid, complex, and worthy of respect as everyone else. Please realize that an autism diagnosis isn’t the end of the world, but the beginning of a whole new one. You expected to go to Italy but you ended up in Holland (re-a popular au-related poem ‘Welcome to Holland‘) so what? Forget Italy, Holland is beautiful too.
While composing this post, I asked an internet friend of mine who’s opinion I trust, to help me find blogs written by people with autism. Here is a list of blogs written by au-people for when you’re ready to stop speculating and start listening.