I feel pretty certain that my brother is autistic. Was autistic…? I am not sure how I would define it and I know 42 years ago they didn’t have nearly the clues they have now for diagnoses. He is officially diagnosed as bipolar/schizophrenic with anxiety and obsessive compulsive disorder.
Some people have commented on my own obsessiveness around Will’s diagnosis and my quest to help him get better. If you had insights into life with my brother, you’d understand why. I love my brother dearly, but at times am extremely frustrated with him and the way the rest of my family treats him. At 42, he still lives with my mom and is considered high-functioning for his diagnoses, but is really very low functioning for the rest of the world. Or should I say, my extremely motivated, type-A, over-achieving world?
This brings me to my next point: siblings of kids on the spectrum. Prior to Will’s diagnosis, I knew very little about autism. I knew a lot about my brother’s issues, though. I wondered for many years if I had somehow caused his problems because of the ways I tortured him as a child. In hindsight, it wasn’t really torture – just plain old sibling rivalry and torment that you see often among kids. I’m sure my brother didn’t have the capacity to deal with it, especially considering a possible misdiagnosis for all these years. I’ve lived with a lot of guilt for a long time and am just now pondering how it has all affected me.
Besides guilt, there is a lot of anger and jealousy. My brother always got extra time, extra money, extra help, extra consideration for just about everything because of his ‘problems.’ I’d like to say I got nothing, but as a rational adult, I know that would be completely unfair. As a mother of two children, one on the spectrum and one not, I know it is simply just not true. However, as a kid growing up in a house of five, it very often felt a lot like nothing. Of course, I feel frustrated, too, because if he would just do certain things, I know he could get better. Then I’m thankful for all I’ve been given so I can do what I need to do for my son. And then I feel guilty again, because I got it and my brother didn’t. Ugh!
So, how do you prevent a lifetime of emotional upheaval, not only for your special needs child, but also for their siblings? My initial ‘go to’ source is always Autism Speaks – they have a great set of resources for families and one especially designed for siblings. From there, local chapters of the Arc often have classes and support groups for parents and siblings. You can also ask your child’s teachers and therapists – they’ve been doing this for a while, most likely. Finally, my favorite source of information, that network of autism-moms I’ve created.
I’m certain of one thing – the conversation that I have with my ‘typical’ child about his brother needs to be an ongoing one. It will be different at age 8 than it is at age 4 and I’m certain it will be very different at age 15 and age 25. As long as we all keep talking, I think we’ll get through it.
Interested in reading more? Visit my personal website http://www.walkwithwill.com/