By Carol Greenburg, Executive Director of New York Special Needs Consulting, an advocacy and consulting business that helps parents get educational services for children with disabilities.
It’s the first question people ask me during conversations about autism—and those conversations are frequent in my world. “Does being autistic give you an inside scoop on your son's inner life?” The answer is yes.
Because I’ve walked this road myself, sometimes my familiarity helps me navigate its twists and turns with my son. For example, I look at similar special interests, sensory reactions and stims (self-stimulatory behaviors) my son has now that I had way back when. I think about what spurred them in me to figure out what’s going on with my son. I can try to help him meet needs he may be having trouble articulating.
I’ve outgrown my vocal stims, like singing the same lines of the same songs over and over in a predictable order or distorting my voice by speaking when I inhale instead of when I exhale. My son has never seen me do them. But what amazes me is that he began doing them independently at roughly the same age I did as a child.
There are other times, though, when I'm as mystified or frustrated as any non-autistic parent by my son’s difficulties. That's when I remind myself of something I know on an almost cellular-level from my personal experience: Parenting an autistic child can be hard; being an autistic child is harder.
You think you're upset when your kids lash out during a meltdown? Believe me, they feel worse. On the other hand, that wave of joy that almost knocks you down when your kid reaches a goal set for him by you, his teachers or therapists? That's puny compared to the feeling of achievement autistic children or adults feel meeting goals we set for ourselves.
My son won't be a child forever, though he'll always be autistic just like dear old Mom. Interacting with him as he grows up may present challenges, especially to non-autistic adults. But those challenges are worthwhile, at least that’s what my non-autistic friends report when I ask them what it's like to hang out with me.
At any age, being an autistic in a world not built for our brand of brain function is a tougher challenge for us than those interacting with us. Always. But that, too, is a worthwhile challenge. My son and I know what it feels like to triumph over difficulties presented by either autism itself or, more often, by the frustrations posed by living in a frequently incomprehensible, uncomprehending world. And that feeling of accomplishment is magical on a level almost impossible to communicate to non-autistics.
Carol Greenburg is also the East Coast Regional Director at the Autism Women’s Network and co-editor of the Thinking Peron’s Guide to Autism, available on amazon.com.