(Please read this first, then come back!)
When my son was diagnosed with Asperger’s Syndrome in 2006, his dad and I got all kinds of advice: Find a therapist who specializes in autism. Join a parent support group. Put him in training programs for social skills. Medicate him. Lower your expectations. There was a lot of support out there from people who reassured us that they understood what we were going through.
No one ever suggested talking to someone who truly understands what Nick is going through because they’ve been there themselves. There were opportunities to hook him up with autistic peers, but no one thought (and it never occurred to us) that it might be helpful for him to learn from someone older and wiser… and autistic.
The idea that autistic people are the best experts on living with autism is just starting to gain acceptance in only a very few circles. Still, from what I see, most professionals and organizations seem to think they know what autistics need better than autistics do. I have come to believe that what they actually know is what they want from autistic people, and not want autistic people actually need.
We spent many years trying to get what we wanted from Nick, because that was all we knew to do and we thought it was good for him too. The first person to ever tell us that what we wanted from him was not necessarily what he needed was Karla. She was the first and only autistic adult we had ever met (to our knowledge). She was also the first person Nick was willing to talk to about how he was experiencing his own life, and she understood in a way that no one else could. They were instant friends who immediately began to advocate for each other: she gives voice to his experiences where he can’t find words, and he looks out for her when sensory overload looms.
But as the adult and mentor, it is Karla who guides Nick through the challenges she has already mastered along the way. We’ve learned about simple things like putting Transitions lenses in his glasses to protect him from being overwhelmed by bright lights (we’d had no idea how many meltdowns were a result of sensory overload), and we’ve made huge changes in his school schedule and how we respond to difficult behaviors. It’s like having an interpreter who can read Nick’s signs and explain what they mean, because they speak the same language.
Even with all the best intentions, no one else had ever been able to bridge that gap. And Nick has gone from feeling hopeless and angry to having dreams for his future and knowing he will have support to live his life, his way.