Twenty Years In – Thoughts from an Autism Mother

Although he was only in his mid-thirties, the young man looked weathered beyond his years, and his clothing was dirty and rumpled. He moved hesitantly among the tables in the restaurant, squinting heavily and looking lost. My worst nightmare had just shuffled into McDonald’s, and I was having lunch with him.

Less than 20% of those on the autism spectrum grow up to live independently. I’ve been an autism mother for over twenty years now, and my most pressing thought is, “What happens to my son when I’m gone?”

I arranged to meet Jon, an adult with autism in my community, after he reached out to me on Facebook, and I feared that he was being taken advantage of for his monthly Social Security check. He lived with five other people that made him pay the entire monthly rent, and harassed him when he tried to get help from any government agency, afraid they would lose their own food stamps and welfare checks.

With adulthood, many services and sources of support evaporate. The majority of aging autism parents care for and support their adult children, but Jon’s family had rejected and abandoned him long ago. He could walk to a few businesses nearby, but not a real grocery store. He longed for a service animal to provide comfort so he could navigate downtown more confidently. He wanted to work part-time, but didn’t drive.  Transportation was available, but cost $5.00 roundtrip. (I know – a bargain – but not for someone with a limited income.)  He got by living on the edges of society, but was in poor health and couldn’t effectively organize trips to the doctor or optometrist, or arrange his meals.

He confided that he was lonely and isolated, and spent long hours on the computer. “I wish someone could foster me”, he said quietly.

I’ve always been there for my son: comforting him when he didn’t get to pick from the treasure chest for good behavior on Fridays, staging fun activities when he wasn’t invited to birthday parties, advocating when he needed help. Therapies, learning to drive, applying to college, every step of the way we’ve had to work three times harder than everyone else. Sitting across from Jon, was I looking at what can happen to middle-functioning adults on the spectrum without parental support?

I know we don’t individually have the time or resources to mentor or look out for these adults on the spectrum, but GFWC women know better than anyone what can be accomplished when determined, caring women come together to solve a problem. I encourage you to support autism charities that promote understanding of the medical challenges of the autism spectrum and provide the skills needed to live and work independently. Here are a few suggestions:

  1. The Un-Prescription (the author’s non-profit)
  2. Expandability
  3. Green Bridge Growers
  4. Southwest Autism Research and Resource Center
  5. The Homestead

Together, we can make a difference!

By Dr. Janet Lintala

Dr. Janet Lintala is a clinician and author. Her book is entitled The Un-Prescription for Autism. She founded a non-profit, The Un-Prescription!, to provide resources that educate families and health professionals on safe non-prescription approaches to support the health of individuals on the autism spectrum.