I recently had the pleasure of sitting in and listening as a small group of teenagers got together to talk about something very important to them. Like other teenagers their age, they discussed the things they do, the nervousness and excitement that comes along with moving up to high school or on to college and typical teen age stuff. Yet, this group had a way about them and a maturity that I sat admiring and feeling at home with. These teenagers were all siblings of boys diagnosed with Autism and they had gathered to engage around topics specific to autism siblings.
For privacy and confidentiality I will change the names of the teenagers and their siblings with autism. I also distinguish between the Sibling without autism (capital S/neurotypical or typical sibling) and the sibling with autism (lowercase s) for the purposes of this blog.
The Missing Piece Focus Group was designed to inform Re Spectrum, and hopefully others, of ways to get Siblings involved and what might be helpful for them. This group also happened just days after the CDC announced new statistics that autism affects 1:68 children in the United States. While there is more emphasis on how to support those with autism, Re Spectrum Community is interested in finding ways to help the whole family, not just the individual with the diagnosis, and Siblings are one group that has been a challenge to engage. Siblings can sometimes be placed in the background but often develop amazing qualities or care-giving, kindness and resiliency.
About a year ago, I was contacted by a Sibling who I will call Andrew. He was highly concerned about the potential for Siblings to feel like they don’t connect to others and how they might cope with challenges that come with having a sibling with autism. Andrew is as passionate now as he was then and wants to gather Siblings with other Siblings as a way to connect. While introducing himself and the purposes of the focus group he stated that he “at times struggles with dealing with what my brother has” and that it would be helpful to form a group of similar aged people who might understand this. Andrew was clear that this group should not be formed like a therapy group or that Siblings should be made to talk but imagined that if they were able to gather with other Siblings to have fun and enjoy similar interests that naturally they might find comfort in bringing up any challenges that they had regarding their sibling with autism and have an understanding ear to listen.
The other Siblings in the room who shared common interests in music, movies, and hanging with friends also agreed that they wanted “someone to relate to”, to be there for others who might be in similar positions, and just have “someone to talk to” who might understand… essentially they seem to be asking for someone to fill a piece of connection that may be missing for them.
This was a common theme I heard as I listened… others just don’t understand. And these teens want to find ways to diminish the sense of being alone or others not understanding what their experiences are like… or other just not understanding their sibling with autism.
They told stories of their siblings with autism, some positive and some not so positive but as they spoke there seemed to be an appreciation in the air in which they didn’t have to explain their sibling with autism and what they described did not seem all too weird- to the contrary, they usually commented with “cool”. Like when one Sibling shared that the 13 year old brother with autism walks on top of monkey bars and how often others get concerned about this but to the group was appreciated as “pretty cool”. Although siblings with autism were largely described as having difficulty talking, the group spent more time talking about their uniqueness such as being “crazy athletic”, “super mischievous”, and being able to enjoy something without fear of danger getting in the way.
The biggest concern seemed to be not knowing what is wrong with their sibling at times and not knowing what to do about it. One Sibling told of his “best day ever” when he (alone) took his brother with autism to Legoland and he was instructed to just follow his brother’s lead. That day any problem was able to be figured out and they were just able to enjoy the day.
Another Sibling told a story of his brother with autism that played a prank on his mother, shoving his two fingers up his nose and waiting until she looked again. The appreciation for humor that could be shared was evident.
Harder days were also discussed in which Siblings felt they needed to “try to block others out” and just get through the difficulty. They spoke of challenges that siblings with autism had with routines and times they could not communicate what they needed or wanted. One spoke of trouble in Costco and how others would stare and how the only thing to do was “try to ignore [others]”. And another told of a time his sibling with autism was in a practically empty movie theater and happy as can be, running up to the screen and flapping happily but someone in the movie theater continuously complained and the family was eventually asked to leave. The questioned posed at that time was “why does someone have to make that their problem that day?” A question that is hard to answer.
The group all agreed that having a sibling with autism helped them “see everything differently”. They spoke about being able to “take a step back” and see everything in a new light. This also led them to be “able to cooperate with other with special needs and understand their needs”. It helped them to “never want to look at someone funny”. They felt like it made them “more inclined to help others” and make them “appreciate things” and “want to take advantage of opportunities I have”.
This amazing group of teenagers, have such insight into how they want to be with others and they attribute it to having a sibling with ASD. While they feel they have grown in ways they otherwise would not have (without their sibling with autism), they recognize the challenges that can come and how lonely or isolating it can be if it seems like no one understands.
These teens are hopeful that others will want to join them in their efforts to relate and connect. The Missing Piece Sibling Group will be meeting about twice a month to engage around fun activities like beach days, bowling, sky zone, camping, movies and mini golf. Some activities will include siblings with autism and others will just be for the Siblings to connect. Re Spectrum is proud to support this group, a Sibling group by Siblings and for Siblings and will have one staff to oversee events. If you know someone that might be interested or even someone who could benefit but might be hesitant it may be worth mentioning this group. We cannot wait to see what comes of it and are hopeful that relating to other Siblings can make a meaningful difference.
For more information on The Missing Piece Sibling group contact 619-741-4466