Shards of Severe Autism Reality

We were cleaning books and papers out of the "China Cabinet" in our kitchen today.  We had never stored China there only photos, albums and papers.  Like other China Cabinets though there were glass doors on the front through which you could view the China.  Over time Conor had, on different occasions, while suffering meltdowns,  put his hands through the glass windows.  I thought I had gotten all the glass  out on each occasion but today after moving a group of albums I found some shards of glass, shards of severe autism realities.  

Such events are not talked about by those alleged "thinking persons" and others who talk breathlessly about the joys of autism and criticize parents, and grandparents, of children with severe autism disorders and intellectual disabilities who talk honestly about the severe challenges faced by their own children, the children they love.  Personally they will not stop me from talking honestly about the severe autism disorder from which my son suffers and yes he does suffer from it.  I will continue to speak the  truth about these serious neurological disorders and if my words seem to them like shards of glass then so be it. 

Top 3 Unknown Persons with Severe Autism List

It is routine to see references to very high functioning persons in the mainstream media.  On a web site called TopTenz the site owners have compiled a list called Top 10 People with Autism Known Today. Not suprisingly the list comprises those with very high functioning autism. It is difficult to understand why some of these people have mental health disorder diagnoses but they do.  What is unfortunate about these portrayals is that they do not represent those who are more harshly,  particularly those who are most harshly, affected by autism disorders.  The list includes, among others,  Daniel Tammet, Temple Grandin and  John Elder Robison.  All the names on the list  are successful, creative people who have functioned very well in society, business and the arts. One possible exception is Thomas McKean who was institutionalized for a period but emerged from that institutionalization and is an autism advocate.  Even his story though is not reflective of those who in fact remain institutionalized and cannot advocate or, in many cases, communicate with the world.

Why some on this list of distinguished, accomplished individuals even have an autism disorder diagnosis when they are so successful in life is beyond the understanding of this humble father of a severely autistic 15 year old boy.  Unlike some on the list my severely autistic son was not diagnosed at age 40.  He was diagnosed at age 2 because his challenges were obvious and severe at a very young age.  My son has nothing in common with the geniuses and talents on the Top 10 People with Autism Known Today list.   My son`s challenges are not known though to the general public which is very familiar, as this list demonstrates, with the Tammets, Grandins, Robisons and others of great ability.

My son has much more in common with those persons with severe autistic disorder who live out their lives  in psychiatric hospitals and general hospital wards.  My son has limited communication skills and limited understanding of the world.  He engages in self aggression and can not tell us if he is sick or hurting other than  through his frustrations.   He occasionally engages in public meltdowns and sometimes meets the stares of those who do not understand.  The public that sees a child or youth engaged in a public meltdown does not see autism, the public sees autism in the faces of gifted individuals splashed relentlessly on the media`s pages and sites.  The public will see instead a spoiled child, incompetent parents but they will not see a child with autism because, after all, persons with autism are very smart people accomplished in business, science, literature, rock music organizations and the arts.

There is a top ten list of known autistic persons. There is no list representing those who are uknown, those persons with autism who disappear in a Nova Scotia blizzard or wonder into automobile traffic or drown in a neighborhood pool.  There is no list of autistic persons who can not tell their parents why they don`t feel well.  

The unknown autistic persons  are those with the most severe challenges but the general public doesn`t see those challenges in web site  lists or in the mainstream media.  The media does not inform the general public about the realities of severe autism.  There is no list for the invisible autistic persons who have no flashy skills to show the world.  And the public remains fundamentally ill informed about autism disorders. 

Severe Autism Reality 2007 Flashback - Long Island Autistic Woman Beaten by Attendants in Group Home

Here in New Brunswick, Canada,  we have made little progress in providing decent residential care and treatment for severely autistic adults.  The recent case of the Nova Scotia autistic man locked in his room for 15 days and left to urinate in a corner reminds us all of how desperate life can be for autistic adults particularly those who are too severely affected by their autism disorders to be able to tell their stories when abused by those who are supposed to provide them with care. 

Few stories have been as revolting  and disheartening though as that of the two staffers at the Plus Group Home facility in Long Island arrested in 2007 for repeatedly beating a 50 year old autistic woman with a coat hanger and a shoe. Another employee witnessed the assaults and torture and informed police.  A recovered video camera recorded the assaults  as reported by the New York Daily News:

Two staffers busted for beating autistic woman

BY BRENDAN BROSH AND JOTHAM SEDERSTROM DAILY NEWS WRITERS

Sunday, August 19th 2007, 4:00 AM

Cops nabbed two employees of a Long Island group home - and are looking for two more - who repeatedly beat a 50-year-old autistic woman with a coat hanger and a shoe as a hidden camera taped the attacks.

Nelly Gedeon, 20, and Johny Djhon-Felix, 33, employees of Plus Group Home Inc. in Uniondale, L.I., have been charged with torturing the disabled woman at least four times between Aug. 9 and 16.

The attacks were caught by a video camera cops installed in a vent.

"These people are hired as health care professionals and their job is to care for these people, so it's unfortunate they've abused their position and mistreated this patient," said Nassau County Police Sgt. Michael Williams.

The abuse was first caught on tape Aug. 9 when the employees were taped hitting the woman on the head. Three days later they were taped kicking her in the buttocks, hitting her in the head with a wooden coat hanger and hurling it at her head. Gedeon was also seen hitting the woman on the head with a shoe, police said. An Aug. 16 video showed Djhon-Felix hitting her on the head and shaking her while pulling her hair.

"The defendant [Djhon-Felix] noticed his actions were being recorded by a hidden camera that he disconnected and stole," cops said. The camera was recovered.

Plus Group Home Executive Director Terri Cancilla said an employee notified police of the suspected abuse.

"Safety is a priority," said Cancilla. "We hope this sends a message that this kind of abuse won't be tolerated."