My brother Mike is 65 today (11-11-14). He is my older brother, autistic, very low functioning, and has never said a word in his whole life. I began this blog to relate my experiences in trying to get to know him – a daunting task, when you consider I never knew if he knew who I was. That still holds today.
Mike was diagnosed with autism (in addition to profound retardation – a description of his intellect) in 1951, less than a decade after the famous 1943 paper by Leo Kanner, the first description of autism as a phenomenon consisting of a collection of distinct behaviors, and an ‘autistic loneliness’ wherein the child doesn’t understand the possibility of other consciousnesses besides his/her own.
My posts from January 2013 through November 2013 consist of my attempts to understand my relationship with Michael. As you might understand, this involved a look at family dynamics, the futile attempts to reach beyond the crust of Mike’s exterior and his concentration solely on himself. My search for meaning included study of consciousness; brain function; reading first-hand accounts of the human condition; ways of self expression: writing, visual arts – photography and painting.
I encourage those of you who are interested, to read my early posts themselves, as it is a bit difficult to summarize them here.
Mike has been institutionalized for most of his life. In the early 1960s, he became one of 6,000 ‘patients’ of Willowbrook, a mental institution on New York’s Staten Island. Later it would become notorious for its mistreatment of its charges. It was eventually disbanded and provided an impetus for the further proliferation of group homes and more humane ways of treating those who cannot care for themselves. Mike was transferred to a Developmental Center and eventually to a group home. I am very happy to say that he gets very good care today, as a ward of the state.
In the early days, Dad would gather up the family and off we would go to Willowbrook. It was difficult. I saw all manner of people there who seemed to be lost souls. On visiting days, other families like us would be there. They seemed to be in a trance-like state. I remember – or maybe I’m projecting – the pain of these families, unable to care for their loved ones at home and being heartbroken at leaving them to the mercy of strangers.
We visited him the different State venues, although the frequency diminished. I tried to get Mike involved with my search for him, and for a long period of time I brought my camera. I became more involved with his care, a tribute to the openness of his caregivers.
The most difficult visit:
It was exactly a year and one day ago that the remainder of my family (Mom, my younger brother, Dave and I) last saw Mike. If you follow the link to this post, I am told there are some language triggers. I assure you, I intended no disrespect. I was utterly disappointed and frustrated that my brother Mike did not know any of his family. No recognition whatsoever.
Up to that point in my blog, each post of which was dedicated to Mike. After, I shifted my emphasis to expressing myself in the visual arts. I believe that I am influenced very strongly by my experience as Mike’s brother. I am grateful on one hand, but deeply miss the connection that might have been, with my brother Mike.
Here is a picture of Mike and me at our last visit.
As tough as the circumstances of growing up with Mike, I believe that had a much easier time than siblings with higher-functioning brothers and sisters. I imagine that two way communication is an order of magnitude more difficult. I have absolutely no idea of how difficult it must be for parents.
Happy Birthday, Mike! Many Happy Returns.