Sometimes when I’m talking with someone about autism it feels like we’re talking about two different things. For example, I’ve had countless conversations that go something like this:
“You’re nothing like my child. My child has the serious kind of autism,” they might open with.
“Autism is serious stuff,” I respond. “It’s important to take it seriously.”
“No, I mean my child has the autism with digestive stuff and physical involvement. The severe autism.”
“I have intermittent gastroparesis that has sent me to the hospital multiple times. I have a connective tissue disorder that has caused pelvic organ prolapse. These things aren’t autism.”
And it’s the truth: the co-occurring conditions we cope with are not autism; they are the “genetic hitchhikers” that love to travel with autism. Even being non-speaking—a trait that some people view as the true core of autism—is due to conditions that more frequently occur among those of us with developmental disabilities such as autism or cerebral palsy. However it is not autism itself that prevents speech, but rather these “hitchhikers” like apraxia and extreme sensory processing issues.
Questions immediately arise: how many of these commonly co-occurring conditions are there? How prevalent are the conditions that tend to accompany autism? And if autism is not simply a cluster of co-occurring conditions, then what is it?