No Shoulds: Support of a New Kind for Adults on the Spectrum.
At the Hawkesbury Leisure and Learning Centre in Richmond, a new group for adults on the autism spectrum is meeting regularly to share with one another and provide support. This group is the PEEACE Project; Peer Encouragement, Education And Creative Expression. It’s a concept dreamed up by autism support specialist Berinda Karp. The group is free for participants, as it is funded by Ability Links. You may have seen Berinda and friends holding a regular stall at Richmond Marketplace to display useful resources and promote awareness about the new service.
Let’s be honest. Some of us recoil in horror at the mere mention of the phrase, “support group”. Perhaps in the past it’s been suggested as something that you “should” do. Many may not be aware that the word “should” is something that many neurodivergent adults in particular are accustomed to hearing. In my personal experience, one of the most damaging assumptions that can be made by others is that my far-from-typical brain needs what their brains need, therefore I “should” go to social gatherings or “should” otherwise relax the same way other people relax.
Despite loud protests about perceived “shoulds” from my petulant brain, I swallowed my social anxiety with a good nip of suck-it-up-princess-you’re-a-writer-now, and I took part in the PEEACE support group for a fully immersive experience from which to write.
Oh, alright, alright. So maybe I need something like this, too. I have Bipolar 2 Disorder and also share a great many traits with other adults who identify as “Aspies”; that is, people with Asperger’s Syndrome.*
For autistic adults and children alike, walking into a room of strangers to seek support for being a square peg in a crowded world of noisy round holes seems like a counter-intuitive exercise.
However, the spirit of this support group is different to groups that individuals on the spectrum may have experienced in the past. In fact, the group’s self-devised and informal constitution – written in coloured marker on a wide expanse of butcher’s paper - states that there shall be “no shoulds”. That piece of butcher’s paper remains in the middle of the table for the duration of the meeting, for participants to add to as they see fit. New visitors are handed a gift bag containing information and fun fidgety items, as well as a ten-dollar voucher. Above all, they are quietly made welcome by Yvonne Moraity, the group facilitator. Yvonne is a registered psychologist who specialises in this area.
Behaviours, responses or needs that are typically considered “odd” outside this room are certainly not odd here. Members are welcome to adjust lighting or otherwise make themselves comfortable. Even my fidgeting, erratic sketching and eye contact problems are not “odd” to these people.
The approach is centred on the needs of the individuals taking part, and not on a set program. This, says Berinda, distinguishes the PEEACE Project from other comparable support groups. For adults who may have taken a long and sometimes bewildering road to awareness and/or diagnosis, that may come as a relief, as does the easy style of the meetings and group expectations. Yvonne sends a text message to interested families each Sunday as a reminder of when the group will meet, but attendance expectations are relaxed because of the typical nature of life for families with one or more members who are on the spectrum. That is… for these families, no day is ever “typical”. As many familiar with autism will tell you, “Meet one person with autism, and you have met one person with autism.” (Dr Stephen Shore)
Rhonda**, a participant in the group, quotes that statement word for word. She and her son have been among the first participants of the new group, and Rhonda’s story, it is reported, is becoming more and more common among parents with kids on the spectrum. Rhonda’s experience of seeking assessment and diagnosis for her son led her to an increased awareness of her own traits and needs; also of her ability and potential.
Rhonda now receives support from the group, not only as a parent, but as an individual on the spectrum herself. After hearing my concerns about pressure to socialise, she nodded and said, “It’s the same thing when people want to go and get a cup of coffee. I want to say, ‘It’s not that I don’t want to have a cup of coffee with you. It’s just that I need to escape the world and get home; to be in my sanctuary with my son and my cats. And yet the interesting thing is that even my son notices that I’m a bit stressed. I tell him that I just need that time to sit and read a book, check my emails, and get that recovery time.”
Rhonda’s responsibilities as a parent means that rest and recovery time can be hard to find, especially during school holidays. This illustrates the great need for support services for families like Rhonda’s. It demonstrates the crucial role for autism support in the Hawkesbury, now being delivered by the PEEACE Project.
You can get in touch with the group by liking "PEEACE Project" on Facebook or heading to Berinda Karp's website: www.autismstep.com.au.
*Bipolar 2 Disorder and autism spectrum related measurement tools and diagnoses are very different and should be undertaken by a qualified professional. Please seek advice from a Registered Psychologist.
**surname withheld by request
SBS: “The Struggles of Women who Mask their Autism”.
Dr Stephen Mark Shore: The Importance of Art and Music for Autistic People