- After diagnosing my son's autism, his doctor suggested genetic tests and applied behavior analysis.
- I was devastated and went to the internet to learn everything I could.
When my son was diagnosed with autism at 3, the doctor gave me a pitying look. Then he handed me lab orders for genetic studies and analyses. These tests cost thousands of dollars, he said, and insurance didn't always cover them. But he also told me they were worth doing. "If he does have genetic differences," he said, "you can make sure they don't get passed on."
It took me a moment to realize what he was really saying: If my kid had genetic differences linked to autism, I should discourage him from having children.
I researched everything I could about autism
I left the office feeling crushed, holding my baby tight. This was an esteemed California autism center. In addition to the speech therapy my child was already doing, the doctor prescribed intensive applied behavior analysis, a controversial therapy aimed at changing so-called undesirable behaviors. Studies I read after our visit seemed to suggest that Autistic children who did this therapy for 25 to 40 hours a week showed positive outcomes.
But a closer look at the positive outcomes listed reminded me, uncomfortably, of my conservative religious upbringing. ABA's positive-reinforcement therapy seemed to focus primarily on getting Autistic children to respond positively to commands from adults the first time they're asked. Even neurotypical kids struggle with that, don't they? Why should my 3-year-old Autistic child be forced to spend 25 to 40 hours a week being molded into a perfect, palatable child?
It was as though the doctor thought of my little one as a wrinkled piece of clothing that I should iron out, over and over, until no wrinkles remained.
Back home, I tucked my kiddo in for a nap and curled up around his soft, chunky limbs and sweet-smelling curls. I decided I would learn to be an ABA therapist myself if I had to. I would help my son learn to fit in with his neurotypical peers as much as possible. And if that failed, I would go all in and become an Autism Mom, sharing his every struggle on Facebook and Instagram so the world could support him — and know the pain I went through every day.
I kept researching ABA and autism and looking into resources for parents of newly diagnosed kids. Rather than feeling empowered by the information, I grew more depressed with each new statistic I saw. Articles on the website Autism Speaks told me it was OK to grieve for the child I would never have, so I cried. I watched a YouTube channel documenting a family with an Autistic child, the kid wailing as their parents restrained them in the grocery store. My heart sank. Was this my own child's future?
Then I found something that changed my perspective
Then I stumbled upon the most valuable and life-changing source of information I could've hoped to find: a community of people online describing how they'd been through agonizing 40-hour weeks of ABA therapy and lived to talk about their experiences. They, too, had been restrained in the grocery store. And after all that, they'd watched their mothers cry to their friends about how horrible it was to raise a child with autism.
They were Autistic adults. And what they had to say about these experiences shook me to my core — and changed the way I viewed autism.
It all started when I clicked a link that led to the Autistic Self Advocacy Network, a group of Autistic activists and advocates whose motto is "Nothing About Us, Without Us." I started reading bios for the network's staff members and board of directors; many introduced themselves as Autistic.
They seemed to own the label in a way I hadn't witnessed. The stuff I'd read only hours before on websites like Autism Speaks made it sound like autism was a disease.
I kept reading. In an article on the network's resources page, an Autistic writer said they preferred identity-first language — for example, they described themselves as "an Autistic person" rather than "a person with autism" — because autism is a valued and inextricable part of their identity. Ultimately I realized it's up to the person to decide which language they prefer.
Something started to shift in my mind. I kept reading, clicking links, and reading some more. I read articles by Amy Sequenzia, a non-speaking Autistic writer whose searing criticism of Autism Awareness Month should be required reading. I read articles by Judy Endow, an Autistic author whose work helped me see why the terms "low-functioning" and "high-functioning" harm more than help. I ordered "The Real Experts: Readings for Parents of Autistic Children," an anthology of essays written by Autistic adults.
Horrifyingly, I also learned that applied behavior analysis shares roots with conversion "therapy," a devastating method of abuse that uses behavior modification and other harmful techniques with the aim of forcing LGBTQ people to become straight and/or cisgender.
Autism is not a disease, and my son isn't 'broken'
Over the next several days I read and researched almost constantly. Any remaining notion I had that autism was a disease was yanked away as I saw it for what it really is: a developmental disability, and, as such, a normal and valuable part of our human diversity.
And I also saw that instead of trying to fix someone who's not actually broken, my job was simply to figure out how best to support my child. It was to help him acquire the tools he needed to communicate with others and live his best, Autistic life. I threw the doctor's recommendation for ABA therapy in the garbage, along with the prescriptions for the genetic testing.
My view of sharing my kiddo's autism journey on Facebook turned 180 degrees, too. I realized that, like every other child in the universe, he deserved privacy. He didn't need his good and bad days blasted on social media.
As I emerged from my days of research and reading, the grief evaporated. Joy poured into the space left behind. My child is awesomely Autistic, and I am lucky to have him in my life. Maybe one day he'll be the one writing these articles instead of me, joining his Autistic peers in spreading acceptance and celebration of neurodiversity.