PDD-NOS. What a curious, non-term.
It’s been nearly 10 years ago, but I still hear the conversation ringing in my ears. I can see the room… and I still hear myself saying “but he’ll get well, right? We can go to speech therapy, right? There are things that we can do, right?…” She wouldn’t look at me. I remember hearing, “I’m so sorry…” as she pulled out a bland looking medical brochure. I stared blankly at the word autism. She never even said the A-word. She didn’t have to. In the background a nurse was preparing to collect blood and urine samples… but why do tests, when you don’t have a future?
Stunned. We left her office. Clearly there was no reason to stay.
It was discovered, 2 long years later, that my son didn’t have autism at all…not that it matters what you call your cognitive disability. But this experience living as an autism mom will forever affect me. Like those moms, I will never forget that first eternal moment.
Sadly, 1 in 110 children and their parents will share this moment.
But some things just are what they are. They don’t get better, you just have to move on. The reality was that my son had severe epilepsy. His doctor assured me that epilepsy was better than autism. How lucky. …thankfully there was no brochure.
Since that time, I have devoted a lot of effort to improving the quality of life for people with cognitive and developmental disabilities. It helps to think that your own loss could somehow have a purpose, I guess.
Ten years is a long time. A long time to live with cognitive disabilities. A long time to think about why things happen. But it is also a long time to devote to making a difference. Just last night, a group of graduate students made a difference. Their project, a device to assist children with autism, was selected as one of the top submissions to the prestigious SIGCHI student competition.
I know. It’s just one project and just one competition. But it honors the 1 in 110 moms who will leave a doctor’s office in tears. And it sends the message that all people are worthy of good design.
