Wednesday, June 11, 2008

Invisible Autistics: The Severely Autistic

Parents of children with Autistic Disorder have often encountered uncomprehending stares when their children suffer public meltdowns. Service providers routinely state that mere physical inclusion in a classroom will inevitably help all autistic children and then blame the children when they over overwhelmed. These responses arise from ignorance. Parents strive to educate and inform but they must overcome persistent ignorance of the realities of autistic disorder.

The ignorance is perpetuated by a mass media - read CNN, NY Magazine and now ABC News, addicted to feel good, fluffy tales of autism focused on a few with exceptional abilities and on the barely autistic persons with Aspergers who lead the outrageously misnamed Autism Rights movement; a movement which in fact suppresses the rights of those with Autistic Disorder and severe deficits.

There are some exceptions to the feel good media focus particularly here in Canada. The Vancouver Sun took a realistic look at autism in its Face of Autism series. Recently CBC New Brunswick did a feature on a severely autistic teen living with his parents who have to use restraints to protect family members from acts of aggression. In neighboring Maine, the Bangor Daily News recently featured the story of a Maine family struggling to care for their autistic adult daughter at home in Crisis in Caring.

Generally though attempts to get the truth out about severe autism realities are ignored by the mainstream media. I was in contact with one of the major news networks recently and suggested that they do a feature on the lives of autistic persons living in institutional care. I am not holding my breath on that one. The leaders of the so called Autism Rights movement actively work to suppress the truth being told about persons with severe autism deficits. They organize petitions to harass institutions which use negative images of autism as Dr. Koplewicz and the "Ransom Notes" campaign found out. The families who courageously told the truth about the challenges faced by their autistic children in the Autism Every Day video have been vilified by the leaders of the alleged Autism Rights movement.

Here is the truth about children with severe autism disorders and deficits:

1) Their parents and families love them deeply; that is why they seek to help them overcome their deficits and challenges;
2) Many ARE doomed to lives of dependency and residential or institutional care;
3) Some injure themselves, family members, educators and care givers very seriously through such actions as biting and head banging;
4) Some are so sensitive and averse to specific textures and tastes that they virtually starve themselves;
5) Some have serious intellectual, communication and behavioral deficits;
6) Some lack understanding of the real world and its many danges such as automobile traffic or drowning.

These are only some of the harsh realities faced by severely autistic persons and their families. It is because of these realities that families, persons who actually care about THEM, try to find treatments and hopefully some day a cure, to help them live a fuller, longer, more independent life. No one is trying to cure the high functioning persons with Aspergers who lead the "Autism" Rights Movement. Their anti-cure rallying cry actually has little or nothing to do with them. Their anti-cure rallying cry is really an attempt to suppress the rights of the severely autistic about whom the ARM leaders care very little.

It is, and always will be, parents of the severely autistic who love them, care for them, sacrifice for them, and try to help them who seek to cure their own children and to make the world, including such "news" organisations as CNN, NY Magazine and ABC News aware of their existence.

They are the invisible autistics. They are our children, our brothers and sisters. And we love them as they are. But we also try to make their lives better through accommodation, yes. Through education, yes. Through treatment, yes. And if cures become available, through cures.
And we will undertake these challenges even though our severely autistic family members remain invisible to the world; even though their rights, even knowledge of their existence is suppressed by the leaders of a movement which falsely pretends to speak on their behalf.


jonathan said...

It is not just the severely autistics who are ignored by the media but persons like myself with relatively mild autism who are well in adulthood who can't find mates and whose disability impairs their ability to make a living and whose problems impair their ability to relate to people and have conflicts as well as (in my case) perceptual motor and handwriting problems, stuff like that. Those who believe there is an autism epidemic claim the lack of autistic adults is the part of the proof. We are really there, people just want to make autistics out to be peter pans because they don't want to acknowledge the poor prognosis for even those of us whose autism is relatively mild.

Maddy said...

I certainly relate to the public meltdowns where as the children grow 'larger' there are very few people who understand, although I'm inclined to say that it's anything but 'invisible.'

A little bit more tolerance would be greatly appreciated by everyone.
Best wishes

Unknown said...


Sorry I wasn't clear enough for you. Public tantrums don't tell observers anything about autism as an explanatory factor unless the parents decide to educate onlookers at every such event.

The invisible reference is to the mass media which rarely educates the public about the negative realities. They, like neurodiversity bloggers, of which you are one, like to ignore such unpleasant realities. Tolerance does not grow because the public is not made aware of these behaviors and what lies behind them.

The public is fed a steady diet of savant and breakthrough stories mixed with college bound, articulate "autistics" like your friends in the "Autism" Rights Movement.

But maybe I am wrong. Please let me know the next time ABC News or CNN interviews someone like the middle aged autistic woman in a Long Island residential care facility who could not tell the world that staff there were regularly assaulting her?

Or maybe you can let me know when New York Magazine features a child who is being treated for severe self biting or head banging to the point of brain injury? If these cases are not invisible to the major networks and publications have dealt with some of the harsher autism realities please let me know when they aired so I can track down copies of the shows or articles. I must have missed them.

The very best to you and your family.


Conor's Dad