It’s been a year since I filled out the paperwork that led to my autism diagnosis. Calling the intervening months an “adventure” doesn’t quite capture the roller coaster ups and downs I’ve been on since then.
There’s no question that it’s been mostly good. Yes, some false steps, like wasting time and money on a psychiatrist who saw a prescription pad as less work than taking the time to help me better understand myself. But nothing that didn’t turn out to be a worthwhile learning experience.
The good parts of the past year have been many. I shared the diagnosis with my family and more than a few friends without losing their love or inadvertently ending all life on Earth. Not everyone understood or accepted at first, but they listened patiently, paid closer attention to my differences, and made room for me to be myself. I can still talk the legs off a chair, but my friends no longer flee the room and I don’t end up feeling hurt and depressed. They mostly smile and seem amused at how I can go on and on.
My one challenge has been a persistent, entrenched loneliness. It took a while to figure out why, but it has to do with missing a sense of connection to other people. I volunteer regularly to force myself out of the house. I get together with friends, which is fine even if I’m quiet the whole evening. But I don’t spend time being me with people I can connect with.
I stopped by the Autism Society booth at a local fundraiser last year and asked if they knew of any adult support groups in my part of town. No, they said, and suggested I start one. It took six months for me to gather up enough courage to begin reaching out for advice.
We had our first meeting last weekend. It was made possible by complete strangers, every single one of whom was kind, incredibly helpful and downright enthusiastic about making this new support group a reality.
The head of the local Autism Society offered to sponsor our group, provide insurance and got the word out to everyone in their email list. Our local community college was so enthusiastic it offered us meeting space for as long as we’d like, free of charge. Parents who run a “fun” group for young autistic adults offered advice and support, plus spread the word to folks they knew. Local autism advocates did the same, even helping me navigate Meetup (I’m just too old for some things, and Meetup is one). Complete strangers on Facebook helped me think through what the group might become over time and how to make sure everyone who attended would feel valued and included.
Thirteen people (12 more than I expected in my darker moments) showed up. There were 11 of us on the spectrum or with similar challenges, plus two parents. Ages ranged from high school to over 60. Everyone was different, but we all shared enough interests and challenges to feel connected in a very fundamental way.
We had a great time getting acquainted, deciding what the group should be and who would benefit from attending. By the end of the meeting, we had a long list of topics to cover in future meetings and an amazing amount of detail about the younger folks’ favorite computer games and consoles (another thing I’m too old for).
Everyone agreed the group should be a place where, “those facing daily life with ASD/Asperger’s-related challenges will have the opportunity to get together and be who they are, feel how they feel, and talk about anything they need to express in a safe space with people who understand these challenges.”
We hoped it would be a support system and friendship network extending beyond the group meetings.
We wanted it to provide support, encouragement and resources involving self-advocacy with family, jobs, etc.
And we wanted it to offer ways to have fun together.
It was pretty clear by the end of the meeting that everyone was searching for a way to live life more on his or her own terms and to find that missing sense of connection with others like ourselves. We all struggled with loneliness and want friends who understand and accepted us.
There are all kinds of support groups. If you can’t find one you like, think about starting one.
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