6 Important Lessons Autistic People Have Taught Me
This mom's understanding of autism and her own son changed radically after reading the writings of autistic people and talking with them.
Since my son got an autism diagnosis five years ago, I've learned a lot about how to help him learn, grow, and thrive. In the beginning, much of this advice came from books written by parents and "experts," but my understanding of autism, neurodiversity, and my own son changed radically when I started reading the writings of autistic people and talking with them. Because of this, I'd like to take a moment to elaborate on six of the most important lessons I've learned so far from autistic people.
1. They are "autistic," not "people with autism."
Although there is a strong push for person-first language in the mainstream media and in therapeutic circles, the autistic community pushes back against that, arguing that autism is neurology, not disease. Therefore, we should talk about it like an attribute of a person, not an affliction. If we truly want to accept autistic people, we can't be constantly pathologizing an essential part of them.
2. My voice—and other parent voices—should not monopolize the conversation on autism.
The irony of me stating this here is not lost on me. But despite the fact that I'm a "mom blogger," I've realized over the last few years that I'm a guest in this discussion. Autistic kids, teens, and adults should be dominating the discourse about autism (and dominating the leadership of autism-specific charities and other organizations). But too often, they're left out of their own conversation. That's ridiculous, and truly this adage holds true: "If you want to know about autism, ask an autistic person." (Not their mom or dad!)
3. Compliance training can be incredibly damaging.
Compliance training—like ABA or other methods—can do more harm than good. I didn't know this before I started reading the blogs of autistic people. But so, so many of them write about how damaging it was to be forced to make eye contact, stop stimming, or give up items that bring comfort (like iPads, to name my son's favorite comfort item). This doesn't mean that we should not teach autistic kids—it means that we should find methods that play to their strengths and validate their difference, not try to condition it out of them.
4. Ableism runs deep in our culture, and we should fight against it.
Ableism, or the privileging of non-disabled people over those with disabilities, runs through every facet of our culture. It's there in the casual way people throw words like "lame" or "dumb" around. It's there when we claim that disabled people are inspirations when they do simple things like go to prom, make a cake, or put on their shoes. It's there when "experts" argue against presuming competence (which is simply the radical notion that a non-verbal autistic child like my son is intelligent, though he's not able to express himself through conventional means). And it's there in our push to make our autistic kids indistinguishable from their neurotypical peers. Fighting ableism means accepting difference, and seeing autistic people as intelligent, capable given the right accommodations, and fully human.
5. The future holds so much possibility.
In the early days after my son's diagnosis, I heard so much negative rhetoric about how he needed a "cure," how he would never say "I love you," and how he was fated to have a fairly miserable future. How wrong that was! While my son certainly has challenges, his childhood, teen years, and adulthood hold so much possibility. Thanks to the writing and advocacy of autistic people, I now know he can be educated at grade level and express himself using RPM; he can find hobbies and work that he enjoys; and, although he doesn't talk, he says "I love you" every day, in so many different ways.
6. There is a vibrant, strong, amazing community waiting for my son when he's ready.
When my son first got his diagnosis, it seemed like he was going to live a lonely life; but I know now that there's a rich community ready to welcome him. I want him to accept himself for who he is—not hate himself for being autistic—and one way I hope to ensure that is to connect him with other autistic teens and adults.
So, all that's to say thank you to all the autistic kids and adults writing, advocating, and sharing their experiences. You're making the world a better place for autistic people everywhere, and parents like me have so much more we can learn from you.
Jamie Pacton lives in the Pacific Northwest where she drinks loads of coffee, dreams of sailing, and enjoys each day with her husband and two sons. Find her at www.jamiepacton.com, Facebook, and Twitter.