Today was the first session in this series of the asbergers support group through AANE. Today’s main topic was dealing with medical professionals. Sticking up for oneself in order to get the treatment that suits a person on the spectrum. Some of the group members spoke about the lack of customer service in the medical field. Some of the folks spoke about the fact it took 6 months to get any appointment with a rheumatologist. The mental heath care system is hard to navigate and it is almost impossible if you are already struggling with autism and / or depression pain. It is supposed t help us not work against us. For people who are able to pay for mental health out of pocket, they are able to get help. If you rely on just insurance, your ability to find find providers to help you is very hard. Community organizations do offer sliding scale that helps people, but can be limited. It is often the first thing cut from a budget or not understood by insurance companies. – Greg
Closed Support Groups
I’ve been fortunate enough to lead one of our Closed Support Groups for (Autistic) adults at AANE for the last several years. These reflections are from my perspective as the facilitator; I cannot speak on others’ behalf.
This was actually the first online group for Autistic adults we ran at AANE (we’d offered a couple for parents previously) and we weren’t sure how it’d go. This was pre-covid when using zoom was not the norm it is today. What we did know and feel was the massive need for support among this community. The virtual setting allowed us to reach more people to begin addressing this need, when little or nothing else was available.
The groups are small, capped at 12 members, and coupled with the 8 week structure, this allows for a certain trust and intimacy to develop. They use a facilitated peer support model, meaning group members are primarily the ones providing support to one another.
The amount of acceptance, encouragement, vulnerability and wisdom shared by group members has been beautiful to witness. What makes it even more so is the wide array of backgrounds/identities members have. Among the many commonalities, there are vastly different experiences. Life experience is a teacher like no other and when that experience has been marked by pain and struggle, it leads to an incredible amount of empathy. But it would also be a disservice to not acknowledge the sharing of interests and strengths.
Although people can join the group regardless of when or if they have received a professional/official diagnosis, the majority of members have been newly diagnosed (within the last few years). After years and years of not knowing, yet having to navigate as though they received the same guidebook to life bestown to others, this group says yes, you’re different and no, nothing is wrong with you. When you’ve received the message again and again that being different is not okay, it’s going to have an impact. While Autism affirming therapy can be very helpful in addressing this, I’ve heard many members say that the group experience has been equally if not more powerful. Of course everyone’s process is their own.
I have been changed for the better by being the facilitator of this group and I’m looking forward to many more rounds.
Kelly Urban
Senior Manager of Individual & Family Services
