Our youngest son, Allen, was diagnosed with “learning disabilities” when he was four. It was a very vague label that qualified him for intervention services but did little to help me, as his mother, understand his particular needs. His older siblings like to remind him that he was “born to a busy mom.” He was quiet and undemanding as a baby. Some social problems existed in middle school and high school, but real world issues didn’t happen until he was 26 and had earned an Associates degree in Computer Sciences.
He could find a job. He just couldn’t seem to keep one. It was too loud, too hot. He didn’t understand the directions. He got confused. His teammates teased him. He melted down. He left work and wandered around for hours. He hopped a train into Philadelphia and didn’t know how to get back. He got lost on the highway and ended up in Maryland. My life–already packed with teaching and caring for a disabled spouse–now included rescuing Allen.
After an ill-fated drive to West Chester that left him stranded by the side of the road for hours, I got desperate. I reached out to Occupational Vocational Rehabilitation Services and with a lot of phone calls and patience, was finally able to get Allen therapy, job training, Medicaid , Social Security Disability, and a definitive diagnosis.
Autism.
More specifically, high-functioning autism, what used to be called Asperger’s Syndrome.
The diagnosis helped explain Allen’s idiosyncrasies, but not how to handle them. That part was up to me.
Autism has become a growing concern. According to the CDC, 1 in 36 children was diagnosed with autism in 2023. As a lifelong disorder, children with autism become adults with autism. Currently, there are 5,437,988 adults in the United States who have Autism Spectrum Disorder. Allen is one of them. Yet, a mere 3% of the resources for autism go towards adults. 3%.
Allen is now 38. He still lives with me and likely always will. He is sweet and caring and while social situations are difficult for him, he goes to church every Sunday and hugs all the older ladies. He runs errands for me and helps around the house. He works part-time because full-time puts him on overload. We have, since Ron’s death almost five years ago, found a way to be a contented family of two. Our life is quiet. It works.
But it didn’t just happen. There was no rule book. And there continues to be no rule book for helping me to prepare Allen for a life when I am gone, when he can no longer call me to ask if he should worry if there is a police car parked outside or if he should buy a new wrench since he can’t seem to find his.
It will be up to me to prepare him, as much as I can, and that means helping him to grow his skills of independent living so that he can continue to stay in the little brick house that has always been his home, with his collection of swords and metal rods, his weighted blanket and his Nintendo, and the shed in the backyard that houses his “inventions.” My ultimate hope is that with continued support from his older brother and sister, Allen will be able to live on his own.
And it’s up to me to do my best to make it happen.
And maybe write the rule book for others.
Is there someone in your life who has continued to need your support, even as an adult? How are you preparing that person for a life without you?
I'm reading this the night before my own wonderful, quirky, 24-year-old son gets his B.S. in mechanical engineering. Wow do I ever relate... when you know one awesome autist, you know ONE awesome autist, and every one is a unique jewel. Including your Allen and my Andrew.