Recently I had the pleasure of interviewing two young ladies about what it’s like to have a sibling with autism. I found their cooperation and insight to be remarkable considering they volunteered to talk to me – a complete stranger – privately about their life at home. They spoke with me over the phone candidly and with rare integrity. The experience was humbling and awe-inspiring for me, an only child and now a mother of four who grew up longing for a brother or sister to share life with. As the girls talked about daily life, I was surprised to find that their relationship with a sibling on the autism spectrum is really not that different from any “typical” brother-sister relationship. There is pain, there is joy, but at the end of the day, you always have your sibling. Here is how the interviews unfolded.
The first young lady that I spoke with is Emily, age twelve. She has an older brother with ASD. He tends to be quiet, passive and compliant. He needs help with some tasks that neurotypicals might take for granted. I asked her what it’s like living with a sibling with autism, what she likes about it and what is difficult or challenging. Emily stated that sometimes her brother can be annoying, especially when he is making noises repeatedly at bed time. But she just tells him to go to sleep and he quiets down. Pretty normal, right? Emily shared that one of the best things is that they don’t fight very much and she likes that. Emily takes great pride in her brother’s accomplishments and enjoys looking out for him and helping him with things around the house. She roots for him and shares in his joy when he reaches a goal or masters a new skill. The love and admiration she feels for her older brother is apparent in her fiercely protective spirit. Emily always looks out for her brother.
What has been difficult for Emily is that she has had to go along to the many appointments and special activities for her brother growing up. She said she had to sacrifice sometimes because she couldn’t attend the things she wanted. But on the other hand, she feels like she learned a lot, so much so that she has already decided at age twelve to become a music therapist or a speech therapist to help other kids like her brother. Emily is really leaning toward the idea of becoming a music therapist. Music is very important to her, currently playing bass clarinet in school. She has thoroughly enjoyed the music therapy sessions that her brother benefits from. Through regular visits, she has developed a rapport with the therapist and has been able to “interview” her, nearly job shadowing along the way. Emily is convinced that she can use her passion and talents with music therapy to help many other kids in the future.
But the kicker? When I asked, if you could change one thing what would it be? A resounding and happy, “Nothing!” came through the phone line. “I wouldn’t change a thing,” Emily said, “He’s my brother and I love him!”
Next I interviewed Riley, also age 12, who has a younger brother with autism. I asked Riley all the same questions: what it’s like living with a sibling with autism, what she likes about it and what is difficult or challenging.
Riley thinks it is really fun having a younger brother with autism. She described him as a little computer, with a memory sharp as a tack. He memorizes lines from TV shows or radio talk shows. Sometimes he even pretends to be other people. It will keep you on your toes, shared Riley, because life with her brother can be unpredictable. She says the best thing is that he comes up with mentally challenging games for her to play during car rides.
One of the challenges for Riley is that her brother has a really short fuse and can blow up if things aren’t just so. Therefore, she is careful during play time to make sure she does things properly (according to his rules) so as not to set him off. Most of the time it works, but other times it doesn’t. Riley said that she doesn’t let that bother her; she knows it’s just the way he is and she loves him regardless. Yes, Riley has made a lot of sacrifices for her brother as well; attending numerous appointments with him, but that wasn’t the hardest thing. The hardest thing, she told me, is that she was an only child before her brother came along, so she had to get used to the attention being shared among two. Pretty insightful and so true to the birth order, especially since there is almost five years difference in their ages.
Finally, the biggie; I asked her what one thing she would change if she could. Riley said, “I wouldn’t change anything, because he wouldn’t be who he is without autism.” She went on to describe for me this beautiful imagery in her mind that each person is like a star with light coming out at the points, but someone with autism also has rainbows coming out. “They are just specialer,” said Riley.
Once again, I was astounded by the answers from these bright and compassionate young ladies who are wise beyond their years. Emily and Riley have not chosen to view autism as a burden; they are full of joy, optimism, and love.
If you would like to learn more about siblings and autism, plan to join us for The Arc of Illinois Living with Autism conference, June 10, 2015 in Springfield, Illinois at the Hilton. We will have a panel called “Life with Autism” consisting of siblings of individuals with autism, as well as a keynote presentation and sessions on Visuals Supports, Parent and Family Supports, Applied Behavior Analysis (ABA) in the home, ABA in the classroom, a faith-based training and more. Watch for more information on our TAP website, Facebook and Twitter!
Autism Speaks offers a free Sibling Support Tool Kit to help you with dialogue among your children about their feelings or reactions to their siblings’ diagnosis. It is primarily designed for children ages 6-12, but is adaptable to other ages as well.
In addition, The Sibling Leadership Network is currently studying the support needs of siblings of individuals with disabilities. The mission of the network is to “provide siblings of individuals with disabilities the information, support and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families.” If you would like to participate in the national survey, you can take the survey here: http://bit.ly/1IFzmoQ.
Mary Pelich, M.S.
TAP Network Coordinator
Mary is the mother of four, including an 11 year old son with ASD. Each first Friday of the month the TAP blog will feature a post written by Mary, or another parent or sibling of a person with ASD as our “Family Focus First Friday” series. If you are a parent or family member of a person with ASD and would like to write a blog post, email Mary at firstname.lastname@example.org .