At the end of the day all the furious debates are of little weight. Cause, awareness, treatment - all the heated arguments fizzle away. The banter of the irrelevant academics who busily devise tests to "prove" that autistic persons actually have superior intelligence and the annoying posturing by some neurodiversity advocates who claim to know better than parents what is necessary to help our autistic children are all flushed away.
Endless debates about the politically correct way to describe autistic persons, whether we should even publicly mention intellectually challenged autistic people like my son Conor. The hand wringing over such burning issues as whether it is appropriate to describe genetic mutations as "accidents". For this parent of a severely autistic child these arguments appear to be nothing more than empty noise.
Even the incredible joy that Conor brings into our lives each day, the smile that lights up anyone who sees it, the exuberance that propels him skyward as he runs, jumps and flies down the walking trail with Dad struggling to keep up; all give way to the most difficult autism questions.
Where and how will Conor live when we, his parents, are gone. Will he enjoy his favorite things? Will he be able to stim with straws and water filled balloons? Will he have access to computers to watch Pinky Dinky Doo, Pontoffel Pock and the Hoober Gloob Highway?
Will anyone truly care about him? Will Conor be happy when we are gone?
For Conor's Dad, these are the most difficult autism questions; questions for which I have no answers.
4 comments:
Harold,
Your commentary is very moving.
Recently Tammy Faye was interviewed by Larry King. He asked her if the doctors told her how much longer she had to live. She replied that she told the doctor not to tell her, she didn’t want to know.
There are some similarities in our situation as we parents don’t want to hear what happens to our autistic children when they get older. The way some of the young autistic adults have been treated here in New Brunswick is heart breaking.
Your commentary reminds me of my own autistic son, how I used to run with him in O’Dell Park and the University woods, how he used to run up the mountain in Mazzerolle Settlement area to see the view of the Saint John River.
What the system did to him, I don’t want to go into details. And we parents are still alive, it was done in our lifetime.
Finally, I heard the story of the Institute where the Cuckoos Nest Film was made. In that Institute, they found the bodies of numerous patients chained in the dungeon of the Institute and left to die… their bodies were only found many years later. The inhumanity of humans to other humans is sometimes baffling.
We can only hope and pray for the best, let’s keep working on a better future where our adult autistic children can live in dignity.
There are six things that always exert incredible directional force and greatly alter social, intellectual, and other landscapes: definitions, logic, behavioral patterns, imagination, knowledge, and core neurological differences.
Let’s start with the definition of autism. Autism is presently diagnosed and defined using the disease model.
What has sprung forth from such a problematic definition is what’s known as the “either / or” or “false dilemma fallacy -- either view people through the “damage lens” (dehumanizing and marginalizing) or through denial. Polarized schools of thought like this build walls, lead to further problems, and cripple progress.
Next, one needs to better (!) define neurodiversity, something which people anchored in polarized camps don’t tend to accomplish well and even if they do, they can’t seem to keep a balanced and fierce focus on it as their denial or career investments hijack.
Neurodiversity proposes that people vary as far as their neurological wiring is concerned and that the autism range is part of the human spectrum; that autistics share more similarities than differences with other people, that differences are not **all** “damage,” and that all individuals need to be treated with the same humanity, courtesy, and respect, else differences become dividing lines that result in dehumanization and marginalization. I’ve suffered them.
Normal children’s brains start pruning brain cells during rapid brain growth in childhood and the autistic brain does not. How are you going to rewire 100 billion plus brain cells with their pathway propensities? Hurray if a cure is found but will major shifts in intelligences and identity in individuals become problematic? If so, then that will also have to be dealt with honestly despite the fact that honesty and discovery are greatly diminished if the ever present mammalian tendency to reject differences as wrong/damage is left unchecked.
Balanced and honest views are needed for the needed reality checks, not polarized camps, and I think neurodiversity started out as an attempt to be a balanced corrective view…and that it still can be.
We don't have answers either, about who will care for our grandson once his elders are gone. He's nearly five, doesn't speak, and still wears a diaper.
Most people who don't have family bonds to such kids haven't invested in learning about autism and are far (!) more likely to fall into the existing camps while not having the motivation to better care for surviving autistic adults.
It is on the darkest nights that the stars shine the brightest.
There is a purpose for each life and a way will be found for Connor.
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