Donald Trump has never shown an interest in understanding what it's like to have autism -- focusing his attention on discredited theories that vaccines cause autism -- but he doubled down on his ignorance about autism on Tuesday when he referred to it as "horrible." For autism moms like me, those are fightin' words.
During an education event held at the White House, Trump questioned a Virginia educator who works with special needs kids about autism prevalence. "So what's going on with autism? When you look at the tremendous increase, it's really -- it's such an incredible -- it's really a horrible thing to watch, the tremendous amount of increase. Do you have any idea? And you're seeing it in the school?" Trump asked.
When Jane, the educator, responded that the autism rate is around 1-in-66 or 1-in-68 kids, Trump insisted that it must be even more prevalent and they needed to "do something" about it. For the record, Jane was correct; the autism rate is 1-in-68 kids and the prevalence rate hasn't increased since 2010. That's because many experts believe the skyrocketing rates of autism diagnoses in previous years were attributable to better detection methods and screening programs, not an actual increase in autism rates.
Setting aside the fact that the sitting president isn't aware of current scientific theories about autism, Trump's depiction of autism as horrible and a problem to be solved is outdated and unacceptable.
I have two children on the autism spectrum. One of my daughters, now 9 years old, has moderate autism. My oldest son is 18 years old and he's what you might imagine when you think of a computer programmer with Asperger's (now known as high-functioning autism). He lives and breathes computers, and it took him until high school to learn to identify facial expressions and emotions. He scraped by without support until middle school, and he wasn't even formally diagnosed until last year. Without finely tuned diagnostic criteria and highly trained professionals, he's exactly the kind of kid who wouldn't have been diagnosed in the past.
My son has plenty of challenges, despite being labeled as "high-functioning." He experiences intense social anxiety, especially in crowded spaces. He has a variety of sensory issues that make noise or lights that I don't even notice intensely painful for him. He can become obsessed with his favorite topics, and it's nearly impossible for him to shift gears when he's really caught up in something. Social interaction is difficult for him, and he didn't make his first real friend until high school.
I see how much my son struggles, and it's natural for me to want to take away his challenges. But when I asked him if he would "cure" his autism if he could, I was surprised when he said no. "It's who I am and how I think," he told me. And some of those things I viewed as challenges, such as his obsession with programming, are assets to him. "If I didn't have autism, who knows if I'd even be good at programming? I wouldn't have the same focus," he said. For the first time, I considered that maybe my son's autism was as much a part of him as his blue eyes or crooked smile.
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It's not surprising that Trump is still looking for a "solution" to autism. I doubt he's spent much time talking to autistic adults, or learning more about their support needs. That would require a willingness to accept a different worldview, and I've yet to see that from Trump. But by focusing on autism as something to prevent, treat, or cure, Trump is doing kids like mine a disservice, and reinforcing the idea that who they are isn't good enough.
I don't care what causes autism. Like most people, I have my own theories but they don't keep me up at night. I don't withhold vaccines from my kids, desperate to avoid the risk of autism, and I don't support dumping more time and money into searching for a link that simply doesn't exist. Every week it seems like a new study crops up with another theory about what causes autism, but none of that matters much to me because I have stopped viewing autism as a problem to be solved or a disease to be cured.
Autism requires more from me as a mother, and more from society as a whole, but support needs don't determine someone's value. My children with autism are complete and whole people exactly as they are, and they aren't looking for a cure. They certainly aren't asking for Trump's help (my son voted for Hillary, natch). What they need is an administration that is committed to providing them with the real support they need, not trying to erase or eliminate them.
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So, Trump, if you want to "do something" about autism, here's a good place to start: Ask autistics. Stop funding so much research into how to prevent autism and shift your focus to supporting autistics from toddlerhood to adulthood. Expand special education programs, increase insurance coverage for autism services and therapies, and invest in job and life skills programs for autistic adults. Give autistics what they need instead of viewing them as a disease to be prevented.
My kids don't need more people telling them to be different. They live in a world that's designed for neurotypical people, and they are accustomed to having to fit themselves into that world. But what Trump seems to forget is that he is their leader, too. And that means getting to know them for who they are instead of pathologizing them.
I wouldn't trade my kids for the world. The only "horrible" thing in this equation is Trump's inability to see autistics as people, too.