On World Autism Awareness Day 2010 Please Remember the Original Autistics

April 2 is World Autism Awareness Day.  On WAAD 2010  I ask that you remember the original autistics.

The original autistics are those low functioning persons  who would have been diagnosed with autism BEFORE the DSM IV expansion of autism to include Aspergers disorders. Between 75-80% of the original autistics are intellectually disabled.

The  alleged autism self advocate organizations seldom include the low functioning original autistics in their portrayals of autism, they do not talk about them in polite company, when they pose for their many media interviews, or when they socialize with Washington DC politicians and bureaucrats. They object to people who describe the realities of severe autism disorders. 

The DSM5 revisions will continue the DSM IV expansion of the "autism spectrum" .... on the high functioning end of the spectrum.  At the low functioning end of the autism spectrum those with intellectual disabilites will be rendered completely invisibile, swept under the autism spectrum carpet into a separate category completely. There will be no mention of intellectual disability in connection with the autism spectrum.

On World Autism Awareness Day  remember the original autistics,  those severely affected enough by their autism  that the condition came to be known as a disorder.  Increasingly, and with the kind assistance of the DSM revisions, autism as a disorder is disappearing and being described as just a different way of thinking. Low functioning autistic persons will be swept completely into an intellectual disability category and removed from the autism spectrum.

 The decision to remove the low functioning original autistics from the autism spectrum has already been made and the public comment section of the DSM5 web site will not change that one iota.In the DSM5 era they will no longer be considered autistic.

Whether for historical reference purposes, or out of solidarity with those who are  severely affected by autism disorder, please remember the original autistics this World Autism Awareness Day.

This request is made by the father of a 14 year old low functioning autistic son. He is one of the original autistics.

autism

Read more »

Autism Priorities and the DSM V: Media Ignores Invisible, Severely Autistic in DSM V Discussions

The invisible autistics, the severely autistic, those with Autistic Disorder, profound developmental delays, cognitive and intellectual deficits, those who can not live independently, who live on hospital wards and in large, antiquated psychiatric institutions do not make regular appearances in the New York Times and its junior Canadian cousin the Globe and Mail. Nor do they appear regularly on the various CBC television and radio shows that have fawned over Michelle Dawson, Amanda Baggs and more recently Ari Ne'eman.

In the big, mainstream media discussions, and opinions about the proposed changes to the developmental disorders section in the DSM V nothing has changed. Ari Ne'eman and other barely autistic, very high functioning persons with Asperger's Disorder continue to receive all the considered attention of the big media while the severely autistic remain, as always, invisible. There is scant mention in any of the mainstream media commentaries of those whose lives are most severely restricted by autism disorders. The Globe and Mail breathes hot air about "a culturally rich autism" while ignoring those severely autistic persons living in institutional care throughout Canada.

Plus ça change, plus c'est la même chose

autism

Read more »

Autism Awareness - Ari Ne'eman Confesses

"My identity is attached to being on the autism spectrum"

Ari Ne'eman, New York Times, Nov 3, 2009

If you ever wondered why some autism self advocacy groups like ASAN, and some self advocacy leaders, like Ari Ne'eman, protest and exert pressure to prevent discussion of the harsher realities faced by low functioning persons with autistic disorder, particularly those with Intellectual Disabilities, you now have the answer.

Ari Ne'eman and some other autism spectrum self advocacy groups who protest realistic depictions of persons with low functioning autistic disorder like to identify with autism but not with those who live in institutional care or otherwise lack their own considerable intellectual, communication, social .... and ... self promotion skills. Parents talking about the harsh realities of their own children's severe autistic disorders just isn't a feel good experience for the very high functioning Ari Ne'eman and other "autism spectrum self advocates".

Fortunately for Ari and company the New York Times, the New Yorker, CBC and other mainstream media are happy to indulge their whims as the NYT almost confessed in A Powerful Identity, a Vanishing Diagnosis :

Asperger’s has exploded into popular culture through books and films depicting it as the realm of brilliant nerds and savantlike geniuses.

I say almost confessed because while the NYT points out that Asperger's has exploded into popular culture through books and films it does not mention that media organizations like the NYT, the New Yorker and CBC, also dote on the Asperger's and High Functioning Autism end of the spectrum while ignoring the harsh realities of those with severe Autistic Disorder. The result, with organizations like Autism Speaks bowing to pressure from groups like ASAN, is that the most severely autistic persons remain hidden from public view in institutions or in their parents' homes ... they remain the Invisible Autistics. Meanwhile Mr. Ne'eman, barely autistic, revels in the media spotlight ... his identification with his own self defined autism spectrum intact.

autism

Read more »

Invisible Autistics and Severe Autism Awareness at Interaction in Mind

Severe autism awareness is the focus of a new photography oriented autism site called Interaction in Mind.

I have written often about the lack of attention paid to those on the severe end of the autism spectrum, the invisible autistic persons whose autism challenges do not permit them to create orchestrated videos about stimming as a language or to appear before courts and political forums seeking to prevent autistic children from receiving ABA treatment. Unbeknown to the mainstream media (with the exception of the Vancouver Sun as shown in its excellent series Faces of Autism) there are severely autistic children and adults who can not communicate with or without any assisted technology device. There really are autistic adults living in institutional residential care for the rest of their lives. I have visited institutional facilities and seen autistic adults in care. The mainstream media, by and large, has not.

Even in research the focus is almost entirely on High Functioning Autism. Some prominent "autism experts" like Dr. Laurent Mottron routinely publish 2-3 papers a year on autism studies ... involving High Functioning Autism participants. Far fewer papers are published which focus on studies of persons who are more severely affected by autism, persons with Low Functioning Autism.

Blog sites are little better and often times worse. Almost daily the Autism Hub bloggers, persons with High Functioning Autism or Aspergers, family members and even professionals exhort parents and bloggers to speak "Posautively", or positively, about autism spectrum disorders. One enterprising autism parent blogger even organized a Twitter day dedicated to tweeting about the positive aspects of autism. Another well known Canadian blogger likes to gush about the joy of autism while criticizing parents of severely autistic children who seek to treat or cure their autistic children. What all of these efforts do is seek to whitewash the realities of autism. What they do is create a sub-class of invisible autistics whose autism challenges can not be mentioned honestly without being accused of creating negative stereotypes of autism.

There are signs though that a more realistic, less ideological approach to discussing autism disorders is beginning to develop. Jonathan Mitchell, autism's gadfly, Jake Crosby at Age of Autism and Stephanie Lynn Keil are all persons with autism spectrum disorders who refuse to glorify autism disorders, who try to write honestly about autism and the restrictions it can impose on the lives of those affected.

Interaction in Mind, a photography oriented web site created with the express aim of raising awareness about severe autism, is a promising new development. I am not sure how the site creator will raise severe autism awareness with a photography oriented site. As a father of a severely autistic son I post many pictures of my son at his best, enjoying life. I have posted some pictures of my son's hands showing self inflicted bite marks or pictures of broken windows. But for the most part my photographic efforts have presented the joy I find in Conor each day. It is difficult to take pictures at some of the more challenging moments when matters require complete attention or even to post the pictures of some of the results which can remain afterward.

The idea of raising awareness of severe autism at Interaction in Mind is excellent. The challenge for a photography oriented site will be to include some of the negative realities that characterize severe or Low Functioning Autism in a world where people would rather see "feel good" representations of reality instead of harsher truths. It will not be easy but it is a step forward just to see a web site dedicated to raising awareness of severe autism. I wish every success for this very worthwhile and promising project.

autism

Read more »

Autism's Invisible Adults in New Brunswick

Much progress has been made here in New Brunswick (Canada) to help autistic children over the past 6 years. Despite substantial advances for autistic children though almost nothing has been done to improve the lives of autistic adults here in New Brunswick.


Many problems and gaps in service delivery for autistic children still exist but we do have government funded early intervention for autistic children with service provided by staff trained at the UNB-CEL Autism Intervention Training Program. UNB-CEL has also begun providing autism specific training Teacher Aides and Resource Teachers. ABA is used in our schools, my son has received ABA based academic instruction for 4 1/2 years. Accommodations have been made in the form of differentiated learning environments. My son is instructed in a small room separate from the mainstream classroom at our request and visits the mainstream classroom, the gym, the pool, the kitchen and the grounds for various activities that exposed him to other children who regularly greet him during my visits.

Government, the media, the public, autism organizations and autism advocates, we all ignore too often the needs, the realities even the existence of autistic adults particularly the severely autistic.

Out of necessity in New Brunswick autistic youths and adults in need of extra care and attention have been sent out of the province, even out of the country, to receive treatment. Autistic adults have lived, and continue to live. in psychiatric hospitals, at least one has even lived on the ward of a general hospital in Saint John. An autistic youth was kept on the grounds of a youth correctional centre in Miramichi New Brunswick until an opening could be found for him at Spurwink a facility operated by our good neighbors in the state of Maine.

New Brunswick's autistic adults need an autism specific group home system. The current system involves placing autistic adults in need of assisted living in general group homes with no staff specifically trained to address the needs of autistic adults. One such home closed with only 24 hours notice.

The most pressing need for New Brunswick's most invisible autistic citizens, the severely autistic is for a multi-level residential facility which could also provide treatment or proximity to treatment. I have visited the Restigouche Regional Psychiatric Hospital in Campbellton New Brunswick where some of New Brunswick's severely autistic adults live. I was very impressed by the management of the facility. It is a necessary residence for some New Brunswick adult autistic persons because of the absence of a modern autism specific residential facility. But it is not the home I would want for my severely autistic son when I am dead or otherwise unable to care for him. Nor do I want if for other severely autistic adults as they age.

Autism is a spectrum of disorders. The spectrum aspect though is often ignored .. by all of us. The adult, aged autistic element is also ignored ... by all of us. Here in New Brunswick we need a multi-level autism residential facility, centrally located, with access to other autism specific resources available in Fredericton to provide expertise to assist in the operation of the facility.

Autistic adults, particularly the severely autistic, need such a facility in New Brunswick now. The truth is they needed it years ago. We can't change the past but we can make a future different from that past. If we start NOW.

autism

Read more »

Autism's Invisible Adults In the New York Times

Congratulations to the New York Times for running a small guest opinion piece about the fate of autistic adults. The article, Growing Old With Autism, is written by Karl Taro Greenfeld, the brother of a low functioning autistic adult and the author of Boy Alone: A Brother’s Memoir. Mr Greenfeld makes the argument that the focus of autism awareness, fund raising and government response has been almost entirely on autistic children. The result has been a lack of resources in critical areas such as residential care and employment opportunities for autistic adults, particularly low functioning autistic adults.

Mr Greenfeld's brother is in his 40's and is low functioning. I am the father of a low functioning 13 year old who, like many parents in that situation, is struggling to prepare for my son's future. I am pleased to see the NYT devote some attention to this serious situation facing autistic adults, particularly low functioning autistic adults.

Mr. Greenfeld quite correctly points out the emphasis on autistic children in today's autism. awareness. Although he talks about his low functioning autistic brother's challenges he does not address directly another issue confounding the problem for low functioning children now becoming autistic adults - the media misrepresentation of autism disorders as being reflected in the realities of persons with high functioning autism spectrum disorders. By and large the media loves to dote on the high functioning autistic and Aspergian media trotters like Amanda Baggs, Michelle Dawson, Ari Ne'eman and Alex Plank. Few mainstream media features are built around the invisible autistics - the low functioning autistic adults living in institutional care or otherwise living very restricted lives dependant on the care of others.

This father of a teen age boy/young man with Autistic Disorder and profound developmental "delays" says thank you to Mr. Greenfeld and the New York Times for this small step towards reminding the world about the invisible autistics, the low functioning autistic adults, the ones who do not attend university, pose for fashionable photo shots in high powered magazines or run from camera to camera shouting "we don't want to be cured".

autism

Read more »

CNN's Invisible Faces of Autism

Despite significant media attention being paid to autism low functioning, truly low functioning, persons with autism remain invisible. The exception to this rule is the Vancouver Sun which provided the most comprehensive presentation of persons with autism from all points of the autism spectrum with its excellent Faces of Autism series. The Vancouver Sun, Pete McMartin, columnist, and Glenn Baglo, photographer, deserve full credit for daring to portray realities of life for persons from across the full spectrum of autism disorders and their families. I say they "dared" to portray these realities because of the hostility generated by image conscious ideologues who do not want the world to know that there are autistic persons with only a limited understanding of the world, of language and of everyday realities. The caring families of the Autism Every Day video know all to well what happens when the real challenges of autism are presented truthfully to the world.

The Faces of Autism series remains one of the few competent commercial media treatments of the realities of truly low functioning autistic persons - other than news responses to horrific stories such as the middle aged autistic woman with no communication skills who was physically assaulted, repeatedly, by staff at a Long Island residential care facility until one staffer, assisted by videotape footage of the assaults, reported them and criminal charges responded. Another incident which elicited media attention to the realities of lower functioning autism is that of the Toronto woman who was allowed to starve to death while in the care of her adoptive sister.

Generally though the lower functioning autistic persons are not featured on the major media networks, news magazines or newspapers. After all, news today is also entertainment and it is easier to sell feel good stories than address hard realities. Anderson Cooper distinguished himself during Katrina by speaking truth to power, by pointing out, when politicians were busy patting themselves on the back, that people were dieing all around them, on the streets and rooftops of New Orleans. But when it comes time to examine the lives of autistic persons Mr. Cooper and the good Dr. Gupta do not visit the invisible autistics, those who do not attend "autism conferences", write internet essays and make videos for world consumption.

In CNN world, in Oprah world, in the world of the mass media generally, much good is done by highlighting autism and raising autism awareness. Unfortunately, for the largest media organizations, the realities of life for truly low functioning autistic persons are ignored. Mr. Cooper and Dr. Gupta do not see or visit the truly low functioning autistic persons who hurt themselves, who lack understanding of language or everyday dangers of life. For CNN and the big media organizations the faces of truly low functioning autistic persons do not show up on their cameras and our television screens, they remain invisible to CNN - and to the world.

autism

Read more »