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.

I Will Not Cower In Fear, I Will Honor My Son by Speaking the Truth About His Autistic Disorder and His Intellectual Disability

As expected I received more flak when I posted another comment about the CDC Autism Expert Dr. Yeargin-Allsopp's comments confirming that 40% of all persons on the entire autism spectrum also have an intellectual disability.  Dr. Yeargin-Allsopp's comments also mentioned that an overwhelming majority of persons with an Autistic Disorder diagnosis also have an Intellectual Disability. Given the 40% figure for the entire spectrum, which includes all those persons with Aspergers who, by diagnostic definition are not intellectually disabled, the expert's comments confirmed my previous comments and sources that approximately 80% of persons with Autistic Disorder also have an Intellectual Disability.  I am just a humble layperson but an 80% "co-morbidity" rate between two closely related conditions suggest to me  very strongly hat they are in fact one condition which has been artificially separated.  Also as I had expected farmwifetwo was particularly harsh in her comment in response. Speaking about her own child she finished with a shot at me:

"But again Harold... What's the point to the rant...

Do you want those with Autistic disorder like my youngest to be written off from day 1 with "well he's just retarded anyways so why should we bother teaching him". That'll defeat all the work you've put in to push for ABA to be paid in full. The gov't's will say "why bother", let's just toss the money into facilities and raise them like animals... Which is what they use to do. Or do you rather listen to the Ped, the special ed dept, the Psychometrist and something the Teachers and children have all discovered...

He's not "retarded", he's "autistic"... "retarded" only gets him funding and placements. Autistic, gets him educated. Unlike some... I'm not writing mine off at 8 as it's appeared you have at 13... There's a lot of living and learning still to do btwn now and the day we die."

farmwifetwo, June 4, 2010,

Although she is harsh in her writing style I don't believe, from what I have read of FW2's comments here and elsewhere, that she intends to be hostile. I think she is passionate about fighting for her son and I respect that. She is welcome to post here and to continue doing so.  On occasion when I think she has gone over the top I will not publish her comments but generally she does not go too far.

I believe that FW2's comments reflect fear, fear that her son will lose all if he is labelled as intellectually disabled or mentally retarded. I understand her fear but I believe nothing is gained in the long run by hiding the truth about our children's disabilities.  I have no doubt about the severity of my son's autistic disorder and his intellectual disability.  They are part and parcel of the same condition.

 My son is now 14 but I realized long ago the full extent of his diagnosis. He was diagnosed at age 2 and he was also assessed shortly thereafter by New Brunswick's leading specialist in childhood autism, clinical psychologist Paul McDonnell.  His full diagnostic assessment has, for many years, been "autistic disorder assessed with profound developmental delays". I am a lawyer but you don't have to be a lawyer to know what "profound" developmental delays means. As a father I have seen those profound development delays every day of my son's life.  I have no choice but to speak the truth or forever cast myself as a liar. Acknowledging his intellectual disability has not kept me from fighting , at times ferociously, on his behalf and on behalf of other autistic children in New Brunswick. I do not write off my son or any other autistic child with, or without,  intellectual disability.   It is those who pretend that every autistic child is another Dr. Temple Grandin in waiting who write off our autistic children by creating a false public image of the challenges they face.

 

We do a disservice to our intellectually disabled children by recoiling in fear from speaking the truth, from telling the world the full extent of their challenges.  I will not cower before the stigma that so wrongly accompanies intellectual disability.  For me, that also means acknowledging that when 80% of persons with Autistic Disorder also have an Intellectual Disability that the two are not just related conditions.  They are part and parcel of one neurological condition that has been artificially separated.

Autistic Disorder and Intellectual Disability separate disorders? Sell that bridge to nowhere to someone who hasn't already crossed the river and seen the truth.

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.

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.

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New York Times Examines Autism and the DSM V, From an Aspie Perspective, Of Course

Perhaps the New York Times is about to shock me and publish an article discussing potential changes to the "autism spectrum" of disorders in the DSM V from the perspective of the impact such changes might have on the lives of those with severe autism, from the perspective of low functioning persons with Autistic Disorder, like my son, Conor Doherty. For now though, like almost every mainstream media article or opinion piece discussing the "autism spectrum" it has done so from the perspective of those on the High Functioning end of the spectrum. The NYT mentions, but does not explore, the impact on the more severely affected of proposed changes to the "Autism Spectrum" of disorders in the DSM V.

In A Powerful Identity, a Vanishing Diagnosis the NYT focuses on the possible loss of the "Aspergers" label by inclusion of Aspies in an autism spectrum divided by levels of severity without reference to the Aspergers label. Ari Ne'eman is referenced talking about the importance to him of being on the Autism Spectrum:

"My identity is attached to being on the autism spectrum, not some superior Asperger’s identity. I think the consolidation to one category of autism spectrum diagnosis will lead to better services."

The NYT has, once again, found it within itself to discuss autism in terms of the most fortunate amongst the "autistic", those for whom one of the most serious issues is a question of identification with one label as opposed to another. The NYT, as it and the mainstream media at large, almost invariably do, provides little comment on the lives of the most severely affected by autism disorders, the many persons with Autistic Disorder who are low functioning, some with Intellectual Disabilities, some who do not understand the world in which we live on anything but the simplest level, some with very limited comprehension of language ... some of whom live out their lives in residential and institutional care.

The New York Times did mention that the proposed changes to the DSM will possibly include express description of various conditions which often accompany autism disorders, such as "anxiety, attention disorders, gastrointestinal problems, seizures and sensory differences like extreme sensitivity to noise". The Times studiously avoids any express reference to the persons with Autistic Disorder and Intellectual Disorder. A sure sign of the success of the High Functioning Autism and Aspergers groups efforts to prevent any discussion of autism in connection with intellectual deficits.

The NYT quotes Dr. Temple Grandin on the dominance of the Aspergers advocacy groups in dominating public discussion of autism: The Asperger community is a big vocal community, "a reason in itself” to leave the diagnosis in place. For many parents and family members of severely autistic children Dr. Grandin's comments are not news.

This NYT piece itself reflects the domination of autism in the public mind by Aspergers and High Functioning Autism and the exclusion of the Low Functioning, Intellectually Disabled and severely autistic persons with Autistic Disorder.

Organizations such as Autism Speaks are routinely targeted by the big vocal Asperger community for realistically and honestly depicting the life challenges faced by the severely autistic. An even bigger indication of Asperger community dominance occurred when Autism Speaks "kow towed" to this community and pulled its "I Am Autism" video from its web site.

For the NYT, and for Autism Speaks, it is now far more important to talk about Ari Ne'eman's sense of identity than to talk about the severely autistic children who go missing or those who live their lives dependent on the care of others.

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Autism Awareness? Start By Telling The Truth

April is Autism Awareness Month in the United States and April 2nd is World Autism Awareness Day. While some want to believe that every genius or person of exceptional ability from Mozart to Van Gogh to Einstein was autistic there is no way such speculation can possibly be substantiated.

Others focus on the accomplishments of modern day persons with autism like the amazing Dr. Temple Grandin. Such persons with autism should be celebrated and their accomplishments made known to the world. But autism awareness should not be limited to promoting the positive contributions of some persons with High Functioning Autism or Aspergers.

The world should also be informed about people like the two young autistic men facing murder charges, one for the death of his mother, and the young man in Fredericton, New Brunswick who had to be removed from his parents' residence after his mother was injured during a violent outburst at his home. As an autism advocate here in New Brunswick, as a legal counsel who has done some work with persons with Aspergers and as a Blogger I have received information of similar stories involving families with autistic children in New Brunswick. I have visited first Centracare; and subsequently the Restigouche Regional Hospital Psychiatric unit in Campbellton and seen autistic persons living in institutional care.

Thank you to Dr. Grandin ... and to Jason Oldford of Fredericton New Brunswick for being such a fine example of what some autistic persons can do. Jason is a personal friend and a long time autism and Aspergers advocate in New Brunswick who has addressed his challenges head on with public speaking activities at Toastmasters and at autism events.

Several years ago on a St. Patrick's day meeting of autism parents and government representatives Jason attended on his own initiative and addressed all of us. He spoke eloquently, from the heart, about his own experiences and offered his insights about growing up with Aspergers. He did so in a way that was respectful of parents' responsibilities and that brought tears to the eyes of many parents in attendance. Jason's comments before the Senate Comittee studying autism treatment and financing in Canada were highlighted by the Committee in its report. As an Autism Society New Brunswick director who benefited from Jason's organizational skills and in depth knowledge of a number of important subjects I am well aware of the positive contributions that can be made by many persons with autism and Aspergers.

There are many other outstanding accomplishments of persons with autism which appear every day on the internet including those of Alex Bain of PEI whose blog site Runman reports his running successes. But the harsher realities of autism should also be made known on autism awareness days wherever and whenever they are celebrated. We do no favors to the severely autistic by pretending they do not exist and by whitewashing from the public consciousness the harsher realities they face.

On World Autism Awareness Day start by obeying every parent's prime directive to their children - tell the truth.

Tell the truth about autism, the whole truth.

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