Confused? So was I.
Now I'm on Mission to Demystify Autism
On our autism journey, I stumbled through three stages of confusion. The first stage was when my son was really little. He couldn’t talk well, but he didn’t have other telltale markers for autism. His pediatrician, Early Intervention, preschool teachers and my mother insisted that he didn’t have autism. Instead, they told me that he had apraxia. Or maybe he was a genius. Perhaps I spoiled him. I’ll be forever grateful to a neurologist that I found when he was five, who gave us the real diagnosis.
We walked in her office, and he climbed onto the examination table. She didn’t say anything for a while. She just watched him as he fiddled with a water bottle in his hand. He turned the bottle on its side and tried to decode the small print on the label. He was far more interested in the small print on the water label than he was in the doctor. Then she gave him a reading test and found that he was reading two grades above grade level.
She smile at us, and asked, “has anybody ever said the word ‘autism’ to you before?”
We were devastated. It felt like we took a bat to the head. There were other shocks over the years, but that one was very memorable. It was shocking, but it was also important; it ended three years of confusion about Ian’s issues. Now, that we had a diagnosis, it ended one set of confusions, but opened up another set.
Okay, now I knew that he had autism, but what should I do about it? What therapies did he need? Which ones were optional? Which ones were garbage?
And then there was school itself. I was confused quite frequently during his K-12 school years. He was a square peg both in typical settings and autism settings, so he bounced from program to program. I spent countless hours googling IDEA laws to self-advocate for him during IEP meetings. If you spend all your spare money on therapy and have to quit your job to drive young son to therapy, it can be difficult to afford a professional advocate.
As my son was getting ready to leave high school, I was very confused about everything that happened next. I spent three years networking with experts, traveling to various programs, hiring professional support, watching hundreds of hours of webinars, attending transition fairs, talking with more knowledgable parents and learning through trial and errors. Now, he’s on the path towards independence, employment, and security. Most of all, he’s happy.
Because I spent most of the past twenty years confused, it’s my mission to help other autism parents become less confused. I’m using my background as a professor and a writer to build a big education platform both here and elsewhere. I hope that my writing helps you become a little less confused. Or maybe makes you feel less alone in your confusion.
To be clear, all parenting is hard. Even the kid who is a superstar on the soccer field and in AP Calc has his challenges. All parents in our country are reporting record high levels of stress. However, parents like us have unique struggles. Those struggles will probably always be there, but our burden might be easier if we weren’t so perennially confused all the time.
The ACC and The Autism Work
I’m producing an upcoming Webinar series will provide more assistance. We have seven FREE webinars scheduled between October and March. Some are webinars that I’m running myself. Other webinars will feature the input of other experts and professionals. Below are the links to webinars. I will produce Facebook-friendly flyers for each event as we get closer the dates.
Let me just say, 'wow,' for the work for the college and adult life of these neuro-diverse young people. Thank you.