ASD Support Groups: Looking Out for My Brother

siblings

My dad, my brother and I arrived at the coffee shop and made our way to the back room where 20 or so adult men sat with their eyes cast downward on the floor. I coaxed my brother to join them; my dad and I sat further back with the other family members, nervously looking at each other. At that moment, I had doubts as to whether this was going to be successful. Would they start to talk? Did we need to help them? Was that the point of having a social group for adults on the autism spectrum? Over time, however, all of us became more relaxed and, as we got to know one another, the group slowly flourished. Family members were able to become more of a backdrop and natural part of the group, and now it has the feel of a family reunion every time we get together. It is such a safe, comfortable place where everyone fits in, and there’s never a wrong way to do anything.

 

Growing up with loved ones with autism spectrum disorder has shaped my life and determined my professional and personal life paths. As a professional I have become very passionate and dedicated not only to helping individuals with ASD, but also mentoring student speech-language pathologists. I focus on helping new SLPs understand the “why” underlying how individuals with ASD think, so these SLPs can better help these individuals with learning and generalization of skills.

 

Autism also has affected my personal life, in particular, my relationship with my brother (see the April 2014 issue of the Leader “Terra Incognita”). As an adult he has overcome so many challenges. He works fulltime, and enjoys his job. He is one of the kindest and most generous people I know, and I truly admire him. For all that my brother has achieved; however, he (like so many other adults with ASD) has struggled to develop friendships and social relationships. I worry about him becoming socially isolated and that’s where social groups come in.

 

Social groups (notice I do not use the word “therapeutic”) are informal get-togethers where individuals like my brother can meet and participate in activities. In Pittsburgh we are very fortunate to have many such social groups in the city. Over the past several years, I have helped organize events and helped individuals with autism find and develop social networks.

 

Starting a group was actually fairly easy and straightforward. The group that I helped to initiate was sponsored by a nonprofit organization, Autism Connection of PA. They are well-known in the autism community in and around Pittsburgh.  They also included our contact information on their website and advertised our group for us.  In addition, they provide a small stipend to the volunteer organizers to help offset the minimal costs involved (e.g., some advertising, costs of food, etc.) Currently we have approximately 100 members in our group and, depending on the activity and interest of the group members, anywhere from 10 to 25 members show and participate.

 

The group began with a mom looking for a social outlet for her adult son, and I happened to be searching for a social networking opportunity for my brother. Fate lent a hand and brought us all together that day at the coffee shop. We found the easiest way to contact everyone was through email. Through meetup.com we were able to establish a way for everyone to be able to keep in touch with ongoing activities and to email each other (We also have an email group list for those that found the meetup.com website a bit overwhelming). Family members also are allowed to sign up on behalf of someone on the spectrum if using a computer is not comfortable for them.

 

We took a survey and developed a list of activities based on the interests of the group members. Potlucks, bowling, movies, museums, and going to sports games are the most popular activities. Costs for participation and transportation also are factors to keep in mind when planning for an activity.

 

There’s another smaller and more structured group that meets two Sunday afternoons a month. Only adults on the autism spectrum are allowed to attend; family members can drop them off before the meeting and pick them up after. A facilitator leads this discussion group. The group has talked about relationship difficulties, not fitting in, employment, housing, driving, and depression. The facilitator presents a topic beforehand for the group to focus on, so that the group doesn’t perseverate on their difficulties. These discussions have been very popular with some of the adults with the goal being to let them to share stories about themselves, their interests, etc., and not to be a “therapeutic” setting. Occasionally, outside speakers are brought in (psychiatrists, etc.). I volunteered my time and offered three free sessions of speech services for those who wished to participate. But we found that mostly the adults really don’t want “therapy.” They just want a chance to relax and meet people.

 

I can only speak from my own experience, but over time my brother’s social skills and independent living skills have increased significantly. It has been the best intervention that my brother could ever have been provided.  Pittsburgh is made up of small neighborhoods, and my brother bumps into other members of the group from time to time, and independently goes up and chats with them. As anyone who is familiar with ASD would understand, this is huge and miraculous. Also along the miracle front, one day out of the blue, my brother told our father that he wanted to start making his own doctor appointments. Again, the enormity of this cannot be emphasized enough.

 

There is a need for this type of group in every community. Just like adult rehab clinics often have aphasia support groups, SLPs who work in transition settings could start social groups for adolescents and adults. The goal is not to “rehabilitate” them, but merely to help them know that they are not alone, and that they are valued and appreciated.

 

Janice Nathan, MS, CCC-SLP, is a speech-language pathologist and, since 2004, owner of Nathan Speech Services, which specializes in the language and learning challenges of individuals diagnosed with autsim.. Her brother, Sam, was diagnosed with high-functioning autism as an adult in his early 50s. Read about Sam’s story in “Terra Incognita” in the April 2014 issue of The ASHA Leader.

Comments

  1. Thanks for your post! I’ve always wanted to do the same thing, but definitely have felt intimidated to get this started. In reading your post I just caught a glimpse of how I can do this. Again, many thanks for inspiring me and for the caring you bring to your community!!