First, I need you to put yourself in the mindset during the 1980s. No, I don’t mean the big hair, padded shoulders, Pac-Man playing, mullet-styling kind of thoughts—just understand how autism was portrayed and talked about. Even though Aspergers Syndrome was classified by pediatrician Hans Asperger in 1944, it wasn’t even on the diagnosis radar back then. At least that was my experience.
I knew at 2 and the professionals called me crazy.
I knew at 2, that something was up with my son but no medical professional or therapist ever mentioned or discussed it with us as a possible explanation for his developmental and social issues. Not even MacGyver with his safety pin, duct tape, and handy Swiss army knife could break the enigma and solve the mysterious codes within my son.
When he played with cars, he turned them over, placed them up real close to his eyes and watched the wheels spin and spin and spin. He was fascinated by light and we’d go from mall to mall during the holidays to look at all the Christmas tree displays—and they had to be the multi-colored lights, not the plain white twinkles. He was captivated (no obsessed really) with the Tyrannosaurus Rex and collected every toy, book, and VHS on his prehistoric pal in order to learn and talk about it, literally non-stop. He paced around and around our coffee table engrossed in self-conversation.
With those kinds of behaviors and others, and noticing he wasn’t following the typical developmental milestones of his peers, I’d ask medical professionals, “Is he autistic?” And the response was always a categorical “no,” followed by varying responses that I can boil down for you… I am an over-bearing, over-protective, over-reactive mom who just needed to relax and not worry so much.
At 8, I wrote this in his journal…
“I’ve been around lots of kids and there are some really good ones out there, but none compare to you! You are unique. And I know there is something special in store for you. Keep being yourself and don’t let anyone change who you are…and that’s someone incredibly awesome!”
Still no official diagnosis but I was doing whatever I could to find him help and support where he needed it—occupational therapy, tutors, role-play—the list goes on and on. (I’ll share more details on some of the best in future posts.)
Finally, at age 13 we had a diagnosis.
At this point, age 13, it didn’t really matter that he was medically diagnosed with Aspergers Syndrome. He was getting the right interventions and therapies and was already enrolled at a magnificent school for children with learning disabilities. The most interesting thing about the diagnosis is how it came about—from one mom to another.
A business associate turned friend of mine called me out of the blue one day and said that her five year old son had just been diagnosed with Aspergers Syndrome. She thought that this sounded a lot like what was going on with my son, too, and pointed me to a resource on the internet. After answering “yes” to all the bullet points under, “Your child may have an Aspergers diagnosis if…”
I went to The Children’s Health Council in Palo Alto (oh, why didn’t I know about them sooner?) requesting that they specifically test him for Aspergers and wasn’t surprised when their report confirmed the diagnosis.
The Life lessons I learned from all of this.
Reflecting now, I can tell you that I carry with me the utmost confidence in my instincts. And here are my (and will always be my) rules to live by:
- ALWAYS trust your instincts.
- Respect professionals in their fields, but if something doesn’t sit right, trust your gut.
- Only I KNOW my children. This doesn’t mean ignoring professional advice. It just means to listen, evaluate and implement the recommendations based upon my own inner filter.
What life lessons have you learned from being a parent?