In today’s post I am responding to a question from a reader about explaining high functioning autism to siblings. If you are going to talk to siblings about the diagnosis, make sure the child himself knows about the diagnosis, so that if he hears reference to it he’ll know what you are talking about! I’ll make another post in the future about how to tell a child about his or her own diagnosis.
I suggest rounding up some good reading materials. Some of my favorite sources for new books on autism spectrum issues are Jessica Kingsley Publishers (though I do have a bias here since they published my book!), Future Horizons, and AAPC. It can be great to browse around on their websites to look for new books and old favorites. One of my favorites is All Cats Have Asperger Syndrome by Kathy Hoopmann. It is a great picture book that deftly describes the characteristics of someone with Asperger’s or HFA. I think this book is even good for explaining the diagnosis to adults, because it is a book one can easily flip through and get a quick idea of what Asperger’s means. I have a YouTube video describing this book. This author also has a small chapter book that combines a mystery story with the story of a boy being diagnosed with Asperger’s called Blue Bottle Mystery: An Asperger Adventure. The only drawback with these two books, is they require explaining that Asperger’s Syndrome is almost the same as high functioning autism, which could be a bit confusing for kids. Both of these books are available in my Amazon store.
Focus on the individual
Next I suggest thinking about the most helpful characteristics to identify as being part of the autism spectrum for your particular situation. You likely know what areas cause the most frustration for the siblings. Sometimes it may be that their ASD sibling is very bossy and tells them what to do, or acts like the family policeman, trying to get everyone to follow the rules. For another family, it may be that the ASD child blurts out rude comments that the NT siblings find embarrassing or that the ASD child is prone to meltdowns when dealing with transitions or with changes in routine, or if he loses a game. If the siblings can come to understand that these problems are related to how their ASD sibling is “hard wired” they may be able to be more tolerant and helpful. Sometimes I have explained that an ASD is like a kind of learning disability, except that instead of struggling with reading or math, the ASD child is struggling with social skills and with understanding things from another person’s point of view. I also like to point out that if a child is blind, we don’t get mad at them if they don’t know where the furniture is located in a room, so therefore we can try not to get mad at an ASD child when they are having problems with social skills or when coping with schedule changes. These approaches work best with the neurotypical siblings however, rather than the ASD child himself, because they use metaphors which are not usually a strength of someone on the spectrum.
Don’t forget about strengths
While you are thinking about what difficulties you would like to explain, also look for strengths that you can point out that tend to be part of autism. You may be able to point out the ASD sibling’s great memory for facts and figures, or his truthfulness, or his skills with taking things apart and putting them back together. Read my blog post on this topic.
Get support for the siblings
Sometimes the siblings are able to go to a support group for siblings, or otherwise get some support and advice for their difficulties. The siblings of ASD children have some special needs and often need someone to listen to what it is like for them. They may feel jealous of the time and attention their ASD sibling gets, and they often feel that their ASD sibling “gets away” with bad behavior. As a therapist for ASD children and teens, I know I frequently involve the NT siblings to hear some about what family life is like for them, and to give them advice and support. You can also check out the Facebook group Siblings of Autistic Kids.
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