My brother, Larry, was born in 1943 the very year Leo Kanner formulated the diagnosis of Autism. I was born a year later in 1944. This diagnosis of Autism was not universally accepted at first, so my brother was initially diagnosed with Childhood Schizophrenia. My first memories were of sharing a bedroom with my brother in a small duplex on a very busy street. The neighbors in the front duplex had a big, beautiful golden retriever named “Lady” who took it upon herself to herd my brother away from running into the busy street. One of my most vivid memories of that time was of the intensely indignant anger I felt while chasing off some bully boys in the neighborhood who were throwing rocks at my brother and yelling “retard!”
I knew my brother was different, but that was a normal part of life for me. Larry would echo what you said, and he never referred to himself in the first person. He was impulsive, hyperactive and would laugh at odd times like he was thinking of a funny joke. When he got excited he would run around flapping his arms. My mother spent many hours teaching Larry to dress himself and tie his shoes. My mother and I noticed that he would sometimes look as us with such wise and penetrating eyes. He also could sing so soulfully.
My parents struggled in so many ways with having an autistic child. The schools wouldn’t take him because of his hyperactivity, so there was no respite in the community. My father would relieve my mother when he could, taking Larry to work with him and swimming at the YMCA. My mother’s way of coping was to absorb herself in her music as a pianist and piano teacher. My father’s way of coping was to champion my brother’s cause. My way of coping was to be extra good and “easy to raise” to balance out my brother’s difficult behaviors. I felt at times like I was responsible for holding my parents together, individually and collectively.
My mother was caught between her family, who wanted my brother institutionalized, and my father who was of a more activist/progressive mindset, and instrumental in founding ARC in my hometown which started as a parent support group. This also was the Bruno Bettleheim Era when it was believed that Autism was caused by an “ice box” mother. In fact, a psychiatrist once told my mother that the reason Larry had Autism was because she did not love him enough.
Amazingly my parents survived all of this with their marriage intact. My parents and I had to put many of our own needs in the background during a time when there were so few resources. Eventually and sadly, due to my mother’s long-term illness, we had to place my brother in a state hospital in California, as he had become unmanageable at home.
How fortunate we are today to have so many resources available for Autism. However, parents still need to be very activist. There also are many things to balance. The needs of the parents and siblings need to be considered in light of the long hours that are often required for home interventions for the autistic child. If these are not considered carefully the siblings’ needs can become eclipsed, parents become overly stressed and marriages break apart.
Relationship is key. Balancing relationships and negotiating the needs of everyone in the family are the essential tasks for a successful family where there is an autistic child. This can prove to be a daunting task, but not impossible. There are ways by which siblings can be appropriately engaged in treatment with their autistic sibling. Parents can monitor whether excessive focus is placed on the autistic child at everyone else’s expense. Autistic children can be very demanding of our attention, but they are also highly sensitive beings, and their behavior improves in a home where there are healthy, well-balanced relationships.