The Realities of Severe Adult Autism Challenges: Out of the Spotlight and Out of Mind

Dr. Temple Grandin has accomplished much in business, and on the lecture circuit, and deserves applause for her accomplishments.I do not doubt that Dr. Temple Grandin has done much for autism awareness generally over the past 12 years since my son was diagnosed with Autistic Disorder. But awareness of the realities faced by severely autistic adults has not increased noticeably over that time and to some extent has been obscured by Dr. Grandin's accomplishments.  Dr. Grandin is an exceptional person of exceptional accomplishment.  The key word is exceptional.

Claire Danes is receiving acclaim for portraying Dr. Grandin.  And there ends public knowledge of adults with autism disorders.  For many in the public Dr. Grandin, as represented by the beautiful Ms. Danes is the face of autism.  Ms Danes is a talented and beautiful woman, by any measure, but the reality of autism is not so beautiful and the reality of severe adult autism is in fact brutally ugly with many  severely autistic adults living their lives in institutional care and ignored, except for brief flashes, by media and public.

The media gets involved, as it did recently,  in the case of the Nova Scotia autistic man who was kept locked in his room for weeks where he was, despite camera surveillance, left by staff to urinate in a corner. 6 years ago an autistic New Brunswick youth was kept on the grounds of a youth correctional facility despite not having committed an offense or not having been charged with an offense because there was simply no where else to keep him.  He was shipped out of the country to a US facility. Years before that an adult New Brunswick man was kept in a psychiatric  facility before being shipped out of the country to the Spurwink facility in neighboring Maine in the US. The headlines fade, as they usually do, and there is no movie or book industry or interest group lobby to keep the ugly realities of life for severely challenged autistic adults in the public mind. And little, very little, changes for those autistic adults for whom even one of the  most basic of decencies,  a pot in which to pee, is not always assured.

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Autism Awareness Beyond Temple Grandin: Who Will Care for Our Children When We Are Gone?

April 30 is fast approaching and Autism Awareness Month has been marked by the usual stories about the remarkable accomplishments of author, public speaker, very well educated and extremely successful entrepreneur and innovator Dr. Temple Grandin arguably the most accomplished and well-known adult with autism in the world.  Beyond the Temple Grandin stories there is also the usual  speculation that Einstein, and various other historical geniuses,  were autistic.  The identification of autism with historical genius is  led by academic Michael Fitzgerald of the Department of Child Psychiatry at Trinity College, Dublin, who "has speculated about historical figures with autism in numerous journal papers and at least three books".  

Seldom do autism awareness efforts feature the harsher realities faced by many with autism disorders, particularly those with Autistic Disorder   who can not and, unlike Temple Grandin, do not,  become able to speak or otherwise communicate.  Not much is said about autistic children who are seriously self injurious , who drown in neighborhood schools or wander into deadly snow storms or  automobile traffic.  One of the most glaring omissions is the failure to make any, mention of the 75-80% of persons with Autistic Disorder who are also cognitively impaired or intellectually disabled.  Temple Grandin is one thing but it would be much more difficult to hire a talented and beautiful actress like Claire Danes to put a pretty face on autism if the person she was portraying was  intellectually disabled and destined to spend her life in a  psychiatric hospital. 

Parents of children with autism disorders, at least those whose children are severely affected by autism disorders,  do not have the luxury of pretending that autism is a blessing.  Many of us  are haunted by the Ultimate Autism Reality  and wonder who will care for our children after we die. We   have to live every day haunted by the reality that our children will be unable to care for themselves and will live dependent on the care of strangers. 

Virginia Bovell writes about the ultimate autism reality in the Daily Mail in Who'll be there to care for our autistic son when we're gone?: 

"Danny was diagnosed with autism when he was three years old. He is now 16 and, alongside his severe learning difficulties, this year he has been in and out of hospital with chronic gastrointestinal problems.

He is often in intense pain and is on a fair bit of medication. We keep daily charts, we observe changes in minute detail, we adjust dosages - it is like a meticulously calibrated battle plan.

When he is well, it is as if he doesn't have a care in the world. He is cheerfully non-verbal - he has only a few words, such as 'momma', and 'diddle' for daddy. He is also happily and unresentfully dependent on others for most of his waking life.

On a good day I am optimistic for Danny, but if I'm honest, worry often keeps me awake at night. Because he doesn't speak, and understanding him requires close observation, I wonder who will love him enough to give him the levels of meticulous attention that a parent would."

Ms Bovell, and the Daily Mail, are helping create some real autism awareness as April draws to a close.  It may not make for a feel good movie but what they describe is the Ultimate Autism Reality.

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Autism Not a Gift for South Carolina Boy Who Jumped to His Death from a Moving Ambulance

"Shelley Hodge said nobody believed her when she protested her 16-year-old son’s release from a state psychiatric hospital, warning that he could hurt himself or someone else. That teen, Ryan Emory of Greenville, was being driven back to the same hospital Sunday when he loosened a gurney’s straps and jumped out of the back of an ambulance as it traveled down Interstate 85, authorities said.

Emory later died at Greenville Memorial Hospital "

- Greenville Online.com, Autistic Greenville High student dies after jumping from ambulance   

The Greenville Online describes an autism reality unlikely to be portrayed on CNN, or  the larger mainstream media generally,  which prefers to focus on feel good stories about high functioning persons with autism and Aspergers and generally ignores the  harsher realities confronting persons with low functioning autism disorders.  Thanks to Claire Danes and the producers of the recent biopic about Dr. Temple Grandin the misleading image of autism as nothing more than a different way of thinking will likely be pushed more and more by a mainstream media that has no desire at all to burden its viewers and readers with darker tales of the dismal life prospects of those for whom autism is a serious disorder.

CNN has posted a video clip of Temple Grandin on its web site opinion page under the title Temple Grandin: why autism is a gift. In the video Dr. Grandin describes yet again her way of looking at the world and, apart from describing her way of thinking in very positive terms, she also offers the widely circulated opinion that Einstein and Mozart were autistic; a claim based purely on speculation .  Many parents of autistic children would disagree with Dr. Grandin and CNN, which has in the past fawned over Amanda Baggs,  a person with an autism disorder diagnosis who once attended a college for gifted youth . Many parents, including me, love our children and find great joy in them,  but live with the reality that our children are not Dr. Temple Grandin,  that  they are much more severely affected by an  autism disorder which  will restrict and impair their lives.  For the sake of our children, we have to be brutally honest when describing their condition to a world that does not always want to hear about the realities confronting those most severely affected by autism disorders.

The Greenville Online article reports that Shelley Hodge said nobody believed her when she protested her autistic 16-year-old son’s release from a state psychiatric hospital, warning that he could hurt himself or someone else:

"The last six months have been particularly difficult, Hodge said.

Emory became more aggressive lashing out at relatives and others, she said. He was in and out of hospitals for fainting spells and his behavior. 

Hodge said that when the psychiatric institute released Emory, she protested plans to send him home.

“I’m like, ‘He’s 250 pounds. I’m afraid for his safety and mine,’”

“And I wrote that on the discharge plan. Hodge said she believed her son’s troubles went beyond autism and that he needed a thorough evaluation and to be in a controlled environment with “24-7 care.”

A state mental health worker told her Emory’s needs weren’t critical enough, she said

(Highlighting added - HLD)

The media, and health care authorities, don't always put much weight on the information provided by parents of children with autism disorders.  A world that  prefers to see autism as just another way of thinking, as the way of  Einstein and Mozart, does not always listen to parents who claim that their autistic child suffers from a serious disorder which causes harm to them and others. Shelley Hodge tired to tell them but it appears that no one listened.

Autism may be a gift for Dr. Temple Grandin. For others, like Shelley Hodge's son Ryan Emory, it is a disorder which can restrict their lives .... and even end them at an early age. You can read more fully about Ryan Emory at Greenville Online. You are unlikely to see his story  on CNN.

autism

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