This past Sunday morning I was in Seattle at the US Autism & Asperger Association Conference and fortunate enough to catch a panel on “Siblings of People with Autism.” The Panel had five young, neuro-typical men and women ranging in age from 14 to 27, each of whom have siblings on the autism spectrum. I was impressed by the poise, sense of humor, courage and wisdom of this panel and just wanted to pass on a few pointers for parent that I took away from the panel. Open up a channel of communication with your neuro-typical child – all five panelists understand that their parents need to spend more time with their sibling on the spectrum, and don’t really seem to resent that fact. They just want to occasionally be asked how they feel about all of it. And it’s not really a time for you to talk. “Don’t feel you have to lecture or provider more answers…just listen.” Just asking about it let’s the child know it’s ok for them to talk and even voice complaints about their situation or feelings.
- Talk about bullying – It’s a typical sibling instinct (for both girls and boys) to jump into the thick of things to defend their sibling on the spectrum from bullying. So they’ll do it, but often it’s a scary or uncomfortable feeling. Sometimes just a word from you like, “If you see your brother being bullied at school, find a teacher and tell them about it” – will remind them they don’t have to take on all that responsibility by themselves. At a minimum, they may pause to notify someone to get help before they step in.
- Start planning early– for when your child on the spectrum becomes an adult, AND for when you are no longer able to watch over him. There were several talks on this topic over the weekend at the conference. In a country where most Americans haven’t properly prepared for their own retirements, let alone that of a special-needs child, this is a daunting topic . As your neuro-typical kids become young adults they’ll start to think and worry about this, and be prepared to talk about it. One woman on the panel already knows that she would be her brother’s legal guardian should anything happened to her parents. Others weren’t sure what kind of plan was in place. The comment that took the cake (and brought tears to my eyes) was when the 14-year old girl on the panel said, “Well, I’m still a little young to be thinking about what will happen when my parents die, but I’ll take care of my brother.”
- Preparing their friends – As kids, and young adults, most panelists became accustomed to giving an “Autism 101” talk to their friends before they first meet a sibling on the spectrum – just to let them know what to expect. One woman told a hysterical story about her little brother Mikey who went through a phase when he was younger. I paraphrase, “Mikey was really into rain boots…… Just rain boots. One time I had my first boyfriend over the house and Mikey walked in wearing nothing but his rain boots.” – On a more serious and actionable note, many parents are now going into their kid’s first-grade classrooms to explain autism, so that kids (and their teachers) get a better understanding of this early on in life.
- The “R” word – Related to the above, one word that really can be upsetting to people is any derogatory / casual use of the word “retarded.” They often have to explain to their friends why that is upsetting.
- “Pockets of normalcy” – At some point your kids may seek “pockets of normalcy” – times when they can experience life as though they didn’t have a sibling on the spectrum. This may lead them – when they are old enough – to spend more time at their friend’s house than at yours. “Our house was always a mess and crazy. I spent most of high school at friend’s houses.”
If you have tips or great resources for talking with siblings, how to talk to your child’s class about autism, how to prepare for the transition to adulthood, and how to plan for your child’s care once you are no longer able – please share! You can also raise these topics with parents who have been in your shoes on MyAutismTeam in our new Q&A section.
Read more about siblings and the sibling experience here:
Voice of Autism: A Brother’s Perspective – by Laura Shumaker
Siblings – Part of the Family Issues Portion of the Autism Society website
Autism, Siblings, and the Art of Unconditional Love: An Interview With Lindsey Nebeker on the Thinking Person’s Guide to Autism