My original thought for this post was to explore my sense of skepticism about the possibility of communicating with my older brother, Michael. He is low functioning, autistic and has never spoken. This is a theme that I have explored before, and I am concerned about repeating myself. What I have tried to say is that it is so difficult to communicate with someone who doesn’t recognize entities other than him or herself. There is a range of severity in autistic individuals. This is evident from the description of autism as a ‘spectrum’ disorder. My brother acts as if he is the only one in existence; this phenomenon, described as ‘autistic aloneness’ in scientific literature. It’s as if he the only person in his universe, with everyone else as a backdrop. How could anything be lonelier than being the only one in the universe?
Listening
Yes, I am skeptical about being able to communicate with my brother. I am even more skeptical of those people who claim that they know what Mike is ‘thinking’ or feeling. What I do believe is that these people do not listen or observe very deeply. On the contrary, they overlay their own sensibilities on Mike, and assume they know his mind. He is not capable of confirming or denying their assumptions. There is an exception: everyone knows when Mike is hungry; he goes right for the food.
I do not deny that Mike has feelings. I have seen him laughing hysterically, crying and frustrated (as evidenced by his yelling and fiercely biting his own hand).
But it is not obvious what he is laughing, crying or frustrated about.
Strangers
Perhaps I am missing the larger issue here. Most people, if they were to see my brother and his housemates in the community, would cross the street to avoid them. Communication with people like my brother is not even a consideration. This is not surprising. I’ll take ‘live and let live’ any day. I do have a problem with those who use their ignorance and fear to ignore or deny the very humanity of Mike and those like him; to denigrate them with offensive language or to bully them just because they can.
Search results
I flesh out many of the themes of my writing by searching the Internet. I found a wonderful, thoughtful post by M O’Callaghan called Skeptics and Retards, in which she explores the use of the word ‘retard’ pejoratively. I refer the reader to her blog rather than to summarize it here.
There is a history to the terminology used to describe low-functioning, intellectually disabled people. At one point ‘mentally retarded’ was an acceptable term; for that matter, terms such as feeble-minded and simpleton were in common use. In fact, in the early part of the twentieth century Intelligence Quotients (IQ) levels were associated with the terms, idiot (IQ= 0-25), imbecile (IQ=26-50) and moron (IQ=51-70)
It is hard to imagine that any of these terms were ever used respectfully, but society has not always been respectful to those who cannot fend for themselves.
I rattled a “Music Therapists'” yesterday. ( I wasn’t in the best of moods to begin with) She is an aficionado of a study regarding, the effect of simple vs complex music on Autistic children. And, has been asked by parent’s “What kind of music should I play to my autistic child?”
I posed the notion that my son HAS subjectivity regarding the subject, And, to myself, the question is irrelevant in our case. She deemed I was missing the point.
He likes Mahler, pretty complex. He dislikes Beethoven, Yup, complex. He dislikes, the “Mickey Mouse Clubhouse” song. Simple stuff. It will illicit stimming. He loves the, “Happy Birthday Song.” The rhythm of which embodies simplicity.
What does this mean to me ultimately? Is that sometimes a banana is just that. He has a sense/knowledge of what he likes and dislikes, musically speaking. Like we ALL do. Just play music, watch your kids response… BINGO. Done.
A fine doctor said to me recently, “The problem with some Pseudo therapeutic practices, is that the practitioners, often do not consider the fact that the parent may know more than they do.”
“… they overlay their own sensibilities on Mike and assume they know his mind…”
Beautiful images Jack.
Thank you, Rohan.
Yes, there is that tendency for those with pet theories to fit the round pegs of reality into their square holes of their suppositions. Even computer algorithms that are supposed to predict likes and dislikes, are only suggestions. Some of these programs actually learn, by LISTENING to the user’s input. I think that the best professionals are those that listen, and don’t read through their protocol as if it was a cookbook. The only trouble is that it takes a greater mastery to listen and apply knowledge than to apply knowledge and hope the patient conforms. Alas, the latter example is how most practitioners practice.
Warm regard, Rohan, and thank you for your kind words.
Jack
Just to add: I never wish to disedify anyone’s attempts to help or come up with new ideas regarding Autism. I just know, in some instances, as a parent, what works for my son, and what does not.