Today I’m getting away from the chronological nature of my stories to celebrate a newly published book. I’ve downloaded it on my Kindle and I can’t wait to dive in.
In a Different Key: The Story of Autism, by John Donvan and Caren Zucker.
I’m excited that a highly-rated, well-publicized book centers around a topic many of us are struggling to understand and live with.
I haven’t written much about autism and how it’s changed our family. When Kristen was diagnosed with tuberous sclerosis at 6 months of age, we were told about tumors, mental retardation, seizures and other daunting symptoms. But not autism. Never autism. I guess that’s not surprising — not a lot was known about autism in the eighties.
Yet her behavior has been the most significant struggle for her, and for us. As we studied tuberous sclerosis, we found that behavioral issues were something that many kids with TS had in common: obsessive compulsive tendencies, screaming, tantrums, perseveration, etc. We, like others, blamed the behavior we saw on tuberous sclerosis. Somehow this didn’t feel right, but it was all we knew.
Then came our liberation.
When Kristen was 22 she met with a psychiatrist who gave her an official diagnosis of autism.
Rick and I were flummoxed. For years, we’d been told by doctors that Kristen had tendencies toward autism, but she didn’t have the required number of characteristics. But now, this doctor didn’t waiver: she had autism, no question about it.
Why had she not fit the autism checklist before, and now she did? The short answer: because now we understand that autism is complex and doesn’t fit neatly on a checklist.
Much like our daughter. Strengths and weaknesses that defy easy explanation.
Autism. The more we learned about this vast subject, the more this word made sense of behaviors that had annoyed us, perplexed us, delighted us, and guilted us. Now it freed us.
There’s power in knowledge.
Once we could attach a valid cause for the behaviors, Kristen wasn’t simply a grumpy girl who was screaming that her ears hurt. She was a person with autism who had hypersensitivity issues. For the grumpy girl, we were irritated parents. For the person with autism, we’re compassionate and helpful to shield her hearing when necessary.
When you have the right research terms, you know where to go for help. A few years ago, we had an amazing behavioral therapist who taught us how to recognize patterns of behavior and how to prevent triggers for tantrums. She taught us how to help Kristen de-escalate from a meltdown. Nothing is foolproof, but life is much better after her intervention.
There’s a wealth of forgiveness knowing you, as a parent, didn’t cause the behaviors that aren’t socially acceptable, though you feel that way when your child is throwing a 2-year old tantrum in her 30-year old body in the middle of Target. In the midst of calming her down, ignoring the dirty looks, and walking her out of the now-quiet store, it’s nice to be able to breathe deeply and tell yourself, “It’s ok, it’s just autism.”
It’s even nicer to think people might know what autism is and understand she’s not a monster, she’s just having a hard time processing. Hence my thankfulness for celebrated new books on autism.