My nerves started jangling daily when my son turned two, and inched closer to three, with just a handful of words and a whole lot of precious but unintelligible chatter in his speech résumé.
By the time he was three and still hadn’t begun speaking in two-word sentences, my worry reached a breaking point. What if he had autism? In addition to the lack of speech, there were other signs, too: the way every noise our new puppy made caused my son to clap his hands over his ears and scream in extreme pain. The way he turned away from kids his own age, finding it difficult to cope with their sounds and mannerisms.
He started speech therapy just after he turned three, and after a few weeks, I hedged the question with his speech therapist: “Do you think he has autism?”
She said it was a possibility. On the way home, I cried. A few months later came the evaluation and diagnosis, along with a prescription for Applied Behavior Analysis (ABA) therapy.
I figured I’d throw myself into becoming an “autism mom.”
Maybe I’d get a tattoo of the puzzle piece and start posting daily updates of my son’s journey online. The very night after the diagnosis, I rushed to my laptop to research ABA.
And that’s when I stumbled upon the most valuable information I could ever have found: the autistic adult’s perspective on autism. And most tellingly, the autistic adult perspective on ABA.
ABA, according to an organization that many autistic adults say is harmful and which I won’t link to here, is all about “increasing behaviors that are helpful and decreasing behaviors that are harmful or affect learning.”
But helpful to who? The autistic person, or the people around them?
This quote also inherently assumes that some of the stimming behaviors that ABA aims to train out of autistic kids, like humming and flapping, are somehow bad for learning. What happened to embracing diversity, including diverse ways of expressing oneself, and of learning?
The Autistic Self-Advocacy Network (ASAN), a nonprofit organization run by autistic adults, puts ABA in blunt and honest terms: “ABA uses rewards and punishments to train autistic people to act non-autistic. ABA and other therapies with the same goals can hurt autistic people, and they don’t teach us the skills we actually need to navigate the world with our disabilities.”
The ASAN goes on to say that “Good therapies focus on helping us figure out our goals, and work with us to achieve them.”
Good therapies don’t rob children of their childhoods.
After firmly deciding against putting my son through ABA, I looked up a local ABA provider out of curiosity. Words like “intense” and “highly structured” and “20-40 hours a week” glared out at me from the page.
Put simply, ABA treatment reflects a wider cultural inclination toward seeing autism as a problem to be fixed and prevented instead of a neurodiversity to be embraced.
When I told friends and family that my son was Autistic, they said things like “I’m so sorry” and “That must be so hard,” like autism was some sort of a death sentence.
It. Is. Not.
And I feel terrible for falling into the trap of thinking it was. What an utterly crappy way of looking at my beautiful, energetic, empathetic son.
For over a year now, I have celebrated his Autistic-ness because it is an integral part of who he is.
I would never, ever want to erase it. Because that would mean erasing my son. Instead, I want him to be proud of who he is — an awesome, Autistic kid.
Who, by the way, is thriving. He’s in speech therapy it only takes up an hour a week. Most importantly, it’s designed to help him gain agency and independence in his own life. Instead of stifling him, it draws out his natural strengths and builds them up.
If your child is Autistic, take some time to read books and articles written by Autistic adults. Seek out therapists who affirm your child for who they are and help them feel proud of themselves. Learn their communication style. Watch movies, like Disney Pixar’s Loop, that feature Autistic characters portrayed by Autistic actors. Shut down people who comment that they’re “so sorry” with an “I love that my kid is Autistic. It’s part of his identity and it makes him him.”
Together, you and your Autistic kiddo can work to make the world a more accessible, accepting place for Autistic people everywhere.
