Thinking Out of the Box for My Through-the-Cracks Kid
Are any of us normal? Probably not, but by society’s standards there are those who just don’t fit the norm. I guess that’s how you’d describe my aspergian son. He was diagnosed with Aspergers Syndrome when he was 13, but I knew instinctively he was on the autism spectrum at two. Raising him, and discovering how to help him thrive has been a journey—a journey that will never end, even though he is an adult.
Aspergers, A Good News, Bad News Diagnosis
A diagnosis of a higher functioning form of autism is a good news, bad news situation. The good news is that he can, with the right interventions, learn to function independently in society. The bad news is that it is difficult, and challenging, to find the right professionals and services for his needs, especially now that he is an adult. Even if I can identify resources that can help, he usually doesn’t have access to them because, according to our state’s guidelines, he doesn’t constitute a “substantial disability.” It’s understandable, because the system is bursting at the seams for so many who need assistance, but tell that to him as he struggles to make his way in a world he just doesn’t quite understand.
Staying One Step Ahead
So he never falls through the cracks, I’ve had to stay one step ahead of his development, think beyond today, and come up with innovative solutions for his ongoing growth. There was finding the fully-booked, highly-recommended occupational therapist and convincing her to take on “just one more client.” Then there was the Sherlockian search and discovery of a unique school with a teaching approach tailor made for my son’s learning disabilities. When he showed interest in (and a talent for) acting, I found opportunities for him to audition and perform in community theater. And I am most proud of my executive-level pitch to a state-funded organization to accept my son for their much-needed life skills counseling, becoming their first direct-pay client. These are but a few examples of my pioneering his way.
Thinking Out of the Box
Today, I’m really thinking out of the box so he and others like him have opportunities to grow their self-confidence and independence. I founded Geek Club Books, a creative autism non-profit to tell the stories of autism in engaging and entertaining ways to reach the mainstream and help them make a human connection to autism. My son and other autistic adults play a critical role in our storytelling. I mean, who better to tell the stories of autism than those who are autisitc?
Our Real Life Superhero
My autistic son’s life has been quite the adventure—from being the boy that paced in the corner…from being a social outcast, bullied and reclusive…to commanding a stage, making people laugh with him (and not at him), finding friends who like him for him, and earning the respect of professionals in his industry. He still has his struggles and challenges, but he perseveres and never gives up.
He’s unique. He’s a geek. Cool.
Read more stories about our son:
- The Asperger’s Diagnosis: Even MacGyver Couldn’t Save the Day
- Why Unconditional Love and Support Aren’t Enough
- The String Incident and Dinosaur Bones
- The Karate Kick, Principal’s Office and Happy Mom
- Purple People Eaters and the Beauty of Bedtime Rituals
- “My Brother and I” A Sister’s View of the Spectrum
- From Aspie Infodump to Witty Raconteur
- Getting the ‘He’s Different’ Call