It’s 7:30 a.m., and James and I are waist deep in a full-on Clash of the Titans. I’m fuming about his recent lack of good judgment and he’s defending his choices. Suddenly, he says: “Listen, Mom, why don’t I just leave for a few days and come back when things have cooled down?”
“Excuse me? Leave? And go where? With whom? And do what?” My head is spinning.
James will be 19 in December, and though I knew the day would eventually come, I believed that the transition from my home to his own would be a lot less hurried and not motivated by a disagreement.
Truth is, parents across the world have some level of angst about the “launch” part of parenting. But for parents of children diagnosed with autism spectrum disorder, the prospect of their children living independently is especially worrisome.
For me, the list of logistical considerations that will go into planning for James to live away from home makes my heart race and my stomach hurt. Because James is “high functioning” outside of closed-door meetings with educators and his employer, we have been very discreet about broadcasting his diagnosis. We don’t even discuss his autism much at home. This wasn’t my doing, but by request from James. His justification was that he never wanted to be treated differently or not be accepted because he needed accommodations, so he worked very hard to pattern some of his behaviors after his neurotypical peers. And for the most part, James presents as a shy but very normal teenager.
I had James at a pretty young age so all I knew was how to parent him the way I was parented, which was with a lot of love, responsibility and accountability. I was once told that in spite of a very late diagnosis (James was 10), the best thing we could do for him was to treat him as normally as possible. But now that he’s about to start his last year at the local technical high school, where he will graduate with his high school diploma and an associate degree in culinary arts, I can’t help but think: Is it possible that I focused too much on reminding him how normal he was, that I didn’t spend enough time explaining to him that his diagnosis would need to be embraced and nurtured as he entered into adulthood?
After our disagreement, I lost a lot of sleep. I wondered if I had done enough to inform him of all that I did behind the scenes to make his world tolerable and pleasant. After a week of being unable to truly rest, I decided I needed to make a list of all the things that were concerning me and share them with James. This is what I put together:
Transitioning the onus of his diagnosis onto him. Coming to a mutual understanding that as an adult he is going to have to be more open about his diagnosis when dealing with employers, medical professionals and in his business interactions. And that he would need to start treating his autism as a part of his health makeup that would need attention.
Helping James find a doctor who is well-educated on autism. It’s one thing as a parent to ask your pediatrician questions about your autistic child; it’s something different to speak to a doctor about your own diagnosis. I want to make sure that James feels heard by a practitioner who understands the complexities of being on the autism spectrum.
Asking James how he defines independent living. Getting clear on what James wants, then helping him identify where he is going to need support.
Identify supportive services for autistic adults. There have to be organizations that can provide us with information to help light this road.
Explore apartment living geared toward neurodiversity. I’ve heard there are apartment buildings in Western Washington specializing in providing housing that considers the needs of a non-neurotypical renter. What that looks like I don’t know, but it’s worth the research.
These are the things that keep me up the most at night, but there are a ton of other worries. I don’t expect to solve all these concerns by the time my son graduates and decides on what he would like to do next. I think my approach as we look toward encouraging James to have a life that is fulfilling and dignity-driven is to ask a lot of questions, go with my gut and trust my son. Hopefully, that’s enough.