Autism Functioning Levels Are Important, Reality Based Distinctions, It Is Time To STOP Pretending They Do Not Exist

There are people whose opinions about autism are sought out by members of the media who promote the falsehood that there is no such thing as people who are low-functioning. Those who promote this falsehood should STOP doing so and they should stop right now. They are causing harm. 

We do not do any favors for persons who are severely affected by disorders like autistic disorder, those who have serious intellectual deficits and lack the ability to function independently, by making statements denying that some persons with autism are low functioning because of their autism.  We are hurting them by denying their reality and by assigning blame to them and family members because they do not meet  the high standards of those less severely affected, if at all, by autism. Under the DSM5's new Autism Spectrum Disorder persons who lacks functioning deficits in everyday life activities should not receive a diagnosis  and should not be described as autistic. The proposed wording of the New Autism Spectrum Disorder, despite some questionable components, does make the functioning issue clear in Criterion D of the 4 mandatory criteria to meet an ASD diagnosis:

"D.         Symptoms together limit and impair everyday functioning."

The three categories in the New ASD are distinguished based on functioning levels:

"Level 1 Requiring Support


Level 2 Requiring Substantial Support 


Level 3 Requiring Very Substantial Support "

Being positive about facing challenges should not be taken to the extreme of denying that many people have disorders that in fact render them low functioning even to the extent of being dependent on the care of others in order to live. J E Robison, Alex Plank, Ari Ne'eman, Michelle Dawson and most, if any,  of the members of the Board of Directors of ASAN Inc. do not share the deficits, the low functioning levels, of the 80% of persons with Autistic Disorder (DSM-IV) who have intellectual disabilities.  These successful business people, college graduates, researchers and political participants, some who have sufficient communication skills and social abilities to be able to play in rock bands, find marriage partners, raise families, and participate in high level political and corporate environments do not share the challenges faced by the low functioning persons with autistic disorder whose realities they downplay or deny entirely.  The great irony is that it is on THE Spectrum, Autism Spectrum Disorder, where you find persons with an incredibly wide and disparate range of abilities, deficits and challenges that we are most likely to find people denying that functioning levels matter or even exist.

The attempt to deny the importance of different functioning levels among persons with Autism Spectrum Disorders should STOP right now.  It hurts those most severely affected by autism.

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Low Functioning Autistic Persons Remain Invisible on CNN and in the DSM-5's New Autism Spectrum Disorder

Elizabeth Landau, a CNN Health writer/producer, mentions briefly the DSM-5's New Autism Spectrum Disorder, in a report on the organizational changes in the DSM-5 in Psychiatry 'bible' structure overhauled. Ms. Landau's discussion of changes in the DSM autism classification focuses exclusively on the impact the formal inclusion of Asperger's syndrome in Autistic Disorder will have on persons with Asperger's and parents of children with Asperger's.  No mention is made of the impact on that the changed definition of autistic disorder will have on the invisible autistics, those with actual autistic disorder, often low functioning, with intellectual disabilities, who are likely to live their adult lives in some level of residential or institutional care:

"This organizational framework is trying to emphasize that we don’t have strict divisions between disorders," Regier said.

For instance, Asperger's syndrome, a high-functioning form of autism, instead of being its own diagnosis, would now fall under the broader “austism spectrum disorders.” This move has some parents unhappy because "autism" sounds scarier than Asperger's, which has taken on its own identity in that community, and because children with Asperger's have specific educational needs that are different from kids with more severe autism.

But the association has heard from other parents frustrated that their children with Asperger's are denied special education benefits reserved for autism, Regier said. And biologically speaking, Asperger's is a form of autism, doctors say.

CNN, of course, is not unique in excluding mention of those with autistic disorder, particularly those severely affected by autism disorders, while discussing changes to the DSM autism diagnostic category.The process started in 1994 with the DSM-IV. The DSM-IV revision included a de facto inclusion of Asperger's with Autism in the Pervasive Developmental Diosrders.  The new revision completes that process and waters down further the requirements for a diagnosis of autism. 

As previously noted by CDC autism expert Dr.  Marshalyn Yeargin-Allsopp the DSM-IV definition change, amongst other accomplishments, lowered the rate of persons with autism AND intellectual disabilities ... by expanding the definition of autism to include persons who were by diagnostic definition not intellectually disabled.  Autism's "vast majority" to quote Dr. Yeargin-Allsopp became a large minority.  With the new changes more persons without intellectual disability will be diagnosed as autistic under the watered down definition.  The APA will have taken another large step toward lowering the rates of persons with autism and intellectual disability, not by helping to improve the condition of those persons but by redefining them to a  smaller corner once again. 

It will be easier for APA members, and other health professionals,  to ignore low functioning autistic persons as they become a smaller and smaller percentage of the DSM's New Autism Spectrum Diosorder.  It will  also be  easier for Autism Speaks to continue its feel good "autism" fund raising by promoting  the careers of very high functioning persons with Aspergers, like John Elder Robison and Alex Plank, as the faces of autism when their diagnoses are officially changed from Aspergers to Autism Spectrum Disorder. And it will be easier for Autism Speaks to retain its status as Autism Without Intellectual Disability Speaks.

Meanwhile the vast majority of those currently diagnosed with Autistic Disorder, those who also have intellectual disabilities, those with low functioning autism disorders, will become even more invisible to the public eye. 

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Low Functioning Autism Reality and Autism Posers at New York Magazine

New York Magazine Says Aspergians and High Functioning Autistics, like 

Ari and Alex Shown Posing for their NY Magazine Coronations,   who Socialize

with Washington Pols and NY Media, Drive Land Rovers, Produce  Videos

with Autism Speaks; and Argue with Experts at IACC  Meetings 

Represent, and Speak for, People with Autism

Many parents and siblings of persons with low functioning autism might  disagree

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I received the following email from Wanda James in the Upper Ottawa Valley and post  it with her consent. It is important for those who have children and siblings who are severely affected by autism disorder to speak out and be heard.

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"Hello

I'm so glad to have found you if only because I've been searching the web endlessly and just about ready to pull my hair out reading about all these high-functioning socially inhibited "disabled" people. It was a relief to find someone who understands the true nature of autism and what it entails.

I'm desperately trying to find some info for my mother who is caring for my severely autistic 39 year-old sister. My parents are elderly now and have no idea what will happen to Jennifer when they go. No one in the immediate family can take her-- she is very hard to handle- very self-destructive and obsessive to the point of violence if the ritual is disrupted.  I've been searching for anything to give them hope that there is something out there but I can't find anything except a lot of people who are rejecting help because they don't want autism to be seen as a disadvantage. Makes me so mad. I joined a forum just to "let them have it" but I guess I ran out of steam.  I've got to choose my battles carefully these days. My parents are a bit isolated on a farm in the upper Ottawa Valley in Eastern Ontario so there's not much of a network there. I just wanted to be able to give them some hope that there are programs out there. Except there aren't any. Autism Ontario and the Autistic Society seem to be lobbying the government for lower priority things, like camps for kids, publications, workshops, theatre groups, raising awareness etc.-- and nothing for actual bricks and mortar housing or the staff to put in them. They closed down the only place we had here in Ontario for severely disabled people because they deemed it too "institutional" and not efficient. They then went on to open some prototype group homes which all failed because the people living in them weren't as independent as the government assumed they'd be. Why are governments usually made up of idealistic morons? Don't get me started! : )

I'd like to know how you are doing with getting the message through to governments, etc. I would be lobbying on the Hill if I could, but I'm disabled myself with pretty severe rheumatoid arthritis. I share the sense of fear my parents have and there don't seem to be any answers. Meanwhile, autism has become a trendy thing to have-- and suddenly everybody has it if they so much as stare into space for 5 seconds. I could not believe some of the forums. One woman said she was okay in social situations, but nervous in interviews! Well, duh. Who isn't? But the danger here is the "watering down" of the impact of autism on a person's (and) family's) life. It clogs up the system, driving the numbers up which governments take into account when they are doling out assistance. In the end, the people who really need the help, don't get it. It's much the same with arthritis. Everybody I meet has it-- in a thumb, wrist, whatever. They take a Tylenol and they're fine. But I will be having chemo next month to help eradicate mine. I've got 3 artificial joints and tendon repairs. I've been on some pretty life-threatening medications. But it's hard to be taken seriously, because "hey, my aunt has arthritis, and she can still work". That's why I wrote the book Getting Up is Hard to Do: Life with Rheumatoid Arthritis- to try to get the message out there. Now I've got to fight for my sister. I don't know how to deal with this.

Hope you don't mind me writing.

Take care

Wanda James

Ottawa

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If you have read this blog on occasion you will know that I try to being attention to those who are typically ignored by the mainstream media that fawns over such "autistic" persons as Ari Ne'eman, John Elder Robison, Alex Plank and Amanda Baggs ... all people of considerable intellect and high functioning abilities,  people whose "autism" has little if anything in common with my  severely autistic son diagnosed with autistic disorder by three pediatricians with autism expertise and assessed by an autism specialized clinical psychologist and professor emeritus.  Those for whom autism is a "social" disorder, a different way of thinking or a "culture" do not face the autism reality faced by my son.

Occasionally I hear from parents or other persons with a loved one with  low functioning autism who face challenges similar to my son.  Like me they are all too aware of the periodic Big Media (CNN, CBC, NYT, Newsweek, New York Magazine etc)  anointment of "new" voices of "autism", of new "leaders" of autism.  Where did Ari Ne'eman come from before the New York Magazine elected him as the "autism self advocate" par excellence? How did IACC, Interagency Autism Co-ordinating Committee, member Ne'eman, diagnosed as a teen with Aspergers, a university student with the social skills to hob nob with US federal and state politicians and make innumerable media appearances, acquire the knowledge and understanding of severe autistic disorders to be able to speak on behalf of people like my son?

Various autism advocacy organizations, including Autism Speaks, have accepted these high functioning, barely autistic, persons as spokespersons for all on the autism spectrum and virtually ignore the realities of those most severely affected by autism. As with media and advocacy groups so too with governments which tend to ignore the most severely affected by autism, the low functioning autistic persons who live out their lives in restricted, archaic mental institutions instead of creating  positive, modernized, secure residential facilities staffed with autism trained personnel and access to badly needed professional. For many governments John Elder Robinson, former rock band musician, successful businessman, author and family man is the face of autism not Bryan Nevins who was left to  swelter to death, unable to remove himself from a hot van in Pennsylvania.  For many governments the face of autism is a high functioning, intelligent and articulate media star not the 50 year old autistic woman who could not speak or convey emotions or pain and who was repeatedly battered and beaten by employees at the PLUS Group Home Inc. residential care facility in Long Island. 

Other parents, and members of families with severely autistic loved ones, know the difference. They know that their children are ignored by media, "autism" advocacy groups, governments, even by the American Psychiatric Association which reduced the percentage of persons with autism AND intellectual disability by expanding the definition of autism disorders in the DSM-IV to include high functioning persons with no intellectual disability.  Meanwhile, the APA is continuing its efforts to ignore and exclude those with low functioning autism disorders by further expanding, and diluting,  the definition of autism in the DSM-5.

 The New York magazine is unlikely to visit  any time soon some of the institutions  and facilities like those I have visited or the one in Long Island where a 50 year old autistic woman was abused or the one in Pennsylvania where a young severely autistic man died a horrific death in a searing hot van.  In all fairness though it could be difficult to get some of autistic residents in those facilities to pose  elegantly for some "glam" shots for the New York Magazine.


Those of us with children, siblings and loved ones  severely affected by Autism disorders must continue the fight to better their lives in the face of media, advocacy group and government indifference. 

We have no choice.  Our severely autistic loved ones have no alternative.

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Autism Speaks Walks the Plank

There was a time when I was an enthusiastic supporter of Autism Speaks. That time has passed. I apologize to anyone who might have been influenced by my earlier support to view Autism Speaks as a legitimate spokespersons for those severely affected by autism or the parents fighting to help their children who are truly and seriously affected by autism disorders.

AS has raised the profile of autism around the world, worked together with the state of Qatar to establish World Autism Awareness Day, and raised funding for autism research. When some of the research money went to notorious anti-cure "autism" researchers like Dr. Laurent Mottron I began to have serious doubts about Autism Speaks. It began to look like a bureaucracry shifting with the winds of political correctness as defined by a few major media organizations which seldom portrayed autism as functional disorder which restricts the lives of many with Autistic Disorder and  some with Aspergers Disorder. The bringing on board of successful businessman John Elder Robison as an "autism" self advocate was a serious alarm.  The final alarm though is the recent affiliation with Alex Plank, an allegedly "Aspergian" young man who is also very successful socially, and in the world of the internet, a young man whose web site, amongst other trashy commentary, praised the fact that Dr. Ivar Lovaas had died recently. 

Autism's Gadfly, Jonathan Mitchell, has written an excellent commentary, Mr. Robison Goes to Washington,  on the ill advised role of John Elder Robison as a science adviser for Autism Speaks, an organization which apparently no longer speaks for parents of children with autism, or for autistic persons like Jonathan Mitchell, who would like to see more research aimed at finding a cure for autism disorders.  In the following video, co-sponsored by Autism Speaks, Alex Plank, John Elder Robison's son and an allegedly "Aspergian" young lady mock various toys sold at an autism conference.   Whether the toys are of any therapeutic value, whether autistic children or any children, enjoy playing with them I don't know. What is offensive is the sight of these very capable young people, including Mr. Plank who makes reference to his Land Rover,  mocking the efforts of parents to help their children whether those efforts are ultimately successful or not. The video is set in front of bookshelves filled with books and obviously these are intelligent young people in the video even if their sense of humor is offensive as I in find it to be.  

The mocking humor displayed by Mr. Plank and young Mr. Robison is  mild stuff by the standards at Mr. Plank's Wrong Planet web site where the death of Dr. Lovaas was cheered and parents seeking cures are routinely mocked and derided by self professed Auties" and "Aspies".  Why these obviously intelligent people,  including John Elder Robison,  huddle together under the banners of what are, by definition, mental disorders defined in the DSM, is beyond me. 

What is clear is that Autism Speaks has abandoned any pretense of seeking to  speak for the families of seriously autistic children  and autistic adults who seek cures for their autism disorders.

Autism Speaks, and its integrity, have walked the Plank.

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I No Longer Hear My Autistic Son's Voice When Autism Speaks

I  was once very impressed with Autism Speaks. My son Conor, with Autistic Disorder, severely autistic,   wore an Autism Speaks cap and my vehicle had an Autism speaks sticker near my licence plate. In the ongoing struggle by parents pushing for a cure for autism disorders Autism Speaks was a powerful voice.  It now looks, increasingly, as though Autism Speaks has become at best a professional charity seeking to placate all without any consideration given to its guiding principles and how they are impacted by some of those they embrace with open arms.   

Two of those with whom Autism Speaks engages are Jon Elder Robison and Alex Plank both of whom oppose the concept of curing autism which is, in theory, one of Autism Speaks guiding principles. Mr. Robison to his credit is generally polite, if disdainful about curing autism. Mr. Plank however hosts a forum, Wrong Planet, in which anything goes in attacking people seeking to cure autism. 

Parents seeking to help their autistic children, particularly parents of severely autistic children, should begin reconsidering their support for Autism Speaks. Alex Plank and Jon Elder Robison, two very high functioning persons with Aspergers are the new voices of Autism Speaks? The Wrong Planet hosted by Mr. Plank posts offensive remarks about parents and those seeking cures. It recently posted comments that were depraved and disrespectful concerning the passing of Dr. Ivar Lovaas who did so much to help autistic children. Following is a capture of and a link to some of the  disgusting commentary from Mr Plank's Wrong Planet on the death of Dr. Lovaas:

This father of a 14 year old son , severely affected by Autistic Disorder,  no longer hears his voice when Autism Speaks.

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Misrepresentation of Autism Disorders: Autism Reduced to a Trendy Label?

The DSM5 will formally recognize Autism Spectrum Disorder. This New Autism Spectrum Disorder has actually been used for a while in reference to the various Pervasive Developmental Disorders in the DSM-IV and has helped lead to the banishment from public consciousness of  those with Autistic Disorder and intellectual disabilities, the "full blown" autistics to borrow terms from both Steven Higgs on whom I commented recently and Michelle Dawson who appeared as an "autistic" before the Supreme Court of Canada in opposition to parents seeking government funded ABA treatment for ... Michelle Dawson ... sorry, my mistake ...  they weren't seeking ABA treatment for Michelle Dawson .... they just wanted to help their own children. 

Michelle's Dawson grandiose, and absurd, pretension of  knowing better than parents of autistic children what was needed for those children has been eclipsed since then only by her own rhetoric, the incredible, sad story of CNN's obsession with Amanda Baggs and of course, the New Yorker Magazine/Obama administration's  belief that the anti-autism cure,  autism is not really a disability,  barely autistic Ari Ne'eman should sit on important disability and autism committees.

The misnamed ASAN, Autism Self Advocacy Network,  founded by the ever skyward Ari Ne'eman (Can a position in the Obama cabinet be far away?) has also helped promote the Ari Career Movement.  Composed of lawyers, researchers, writers, professionals of various stripes it is anything but an Autistic Disorder movement. It  isn't even clear that the ASAN requires an actual PDD or ASD diagnosis for persons to consider themselves "on the spectrum". A more accurate name for ASAN by far would be BARN ... the Barely Autistic Rights Network.

BARN, Dawson, Alex Plank, Amanda Baggs replace actual Autistic Disorder with their own self images, the images of those who can function very well interacting with NY and Toronto  media and Washington  and Ottawa politicians.  "The full blown autistics" living in institutional care or otherwise living restricted lives are not in the minds of decision makers who determine whether funding will be made available for autism treatment, or what kinds of schools or residence accommodations should be available to those with actual Autistic Disorder.

"Stranded", author of the Stranded in Motherhood blog, in commenting on my post about Autism Myths, said it very well:


"urrrgh, make so angry. Khaled wants to be cured. He wants to do things the way he knows other people are doing it, he is frustrated with himself when he cannot focus and his body wont stop moving....he is trapped. We see it in everything he does. And he is only 4! What a load of rubbish about individuals not wanting to be cured. I don't want my child's disorder to be sidelined as just "a difference", he is smart, funny, loving, gentle and severely disabled by AUTISM.


The real autism. Not the "trendy label" shoved down our throats by the media, but the real thing."

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Steven Higgs on Autism - One Half Sentence for Autistic Disorder, One Whole Article for Aspergers

Steven Higgs has been a refreshing voice on the autism internet.  He doesn't simply regurgitate the official line on issues and his journalism background and writing skills are always helpful.  When it comes to autism "spectrum" disorders though Steven Higgs does what most in the mainstream media and on the internet do ... he ignores almost entirely those with Autistic Disorder, those most severely affected by autism disorders, and writes an article about the entire autism spectrum of disorders in which he focuses on Aspergers.

In Autism's generation gap, a lesson re-learned Steven Higgs relates his experience, and those of parents of autistic children that he has spoken with, when they realized certain essential truths about "autism".  Higgs mentions ... in one sentence ... his experience with "full blown autism":

"Travis is the first autistic person I've actually conversed with. Over the course of this project I've interviewed a half dozen parents with autistic kids; shaken hands with, observed and photographed a 22-year-old man with Autistic Disorder, also known as "full-blown autism," who lives in a group home in Indianapolis and requires professional care, 24-7; and shared space with (but only caught a fleeting glimpse of) a 15-year-old girl with Asperger's."

The highlighted words in the preceding quote are the only mention of Autistic Disorder in this article about "Autism's" generation gap. The rest of the article is about Aspergers.   Like almost all mainstream media and internet articles the Bloomington "Alternative" journalist's essay is anything but alternative. It is yet another article in which the author talks about autism by taking the easy route, by focusing on the high functioning persons with Aspergers  exemplified by the corporate board members of ASAN  and its leader Ari Ne'eman,  a very intelligent, high functioning person with  excellent communication and social skills, and curiously enough, a diagnosis of Aspergers, who has been appointed,  first by himself, then by his media and political connections, to speak on behalf of the entire purported autism spectrum. From Jim Sinclair to Temple Grandin to Michelle Dawson to Amanda Baggs to Alex Plank to Ari Ne'eman to this  Steven Higgs  article,  the public rarely  sees those most severely affected by autism disorders.

To his credit Steven Higgs at least mentions, albeit in one part of one sentence, the existence of persons with Autistic Disorder  who require 24-7 care.  In itself this brief mentions a bit of autism reality rarely seen outside this, and a few other,  Non Neurodiversity,  autism blogs.

That small mention of someone severely affected by Autistic Disorder is a huge step forward in mainstream media and internet discussions of the alleged  autism "spectrum".  But more is needed to end the misrepresentation of autism spectrum disorders and the banishment of the original, severely autistic from public consciousness. Much more.

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Autism Reality NB Reviews Alex Plank's "Autism" Reality Video

Alex Plank a young man with an Asperger's diagnosis, apparently a very, very mild version of Aspergers, has produced a video called "Autism Reality". The video can be accessed at Static Vox.

In the video, posted on a Facebook thread started by Lisa Jo Rudy on which I participated, Mr. Plank mentions the autism spectrum a few times. And he includes interviews of some nice young people agreeing with Mr. Plank that autism is a "good" thing.

I offered the following video review on the FB discussion thread:

"Autism Reality Alex?

With respect, the autistic children like the boy who died recently in Nova Scotia, like my son who went missing, walking through dangerous traffic, the many who are never found safe might disagree. The autistic children who injure themselves with dangerous head banging, severe biting, chewing on their cheeks or starving themselves because of extreme taste and food texture aversions might disagree. The non verbal autistics living in institutional care might have a different perspective. I am glad though that you paid lip service to the concept of a spectrum of autism in your production. And I hope you, Ms Chew and Ms Rudy don't mind me mentioning some of these other autism realities.

Other than that it is a nice video, lots of good communication, good social interaction, lots of high functioning skills like driving, attending busy, crowded events, good video production skills and no behavior challenges. And of course there are no cognitive impairment issues. Good idea not to confuse the viewing public with that whole "comorbidity" thing.

Two suggestions if you ever edit the video though. One, maybe you could mention the fact that the autism spectrum refers to a spectrum of "disorders". Two, maybe you could add the dates that Einstein and Van Gogh received their autism diagnoses.

Harold Doherty

AutismRealityNB

PS. I like the "autism reality" bit"

autism

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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

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Autism Diagnoses: DSM V Should Separate Autistic Disorder from Aspergers and HFA

There are two major problems with the current DSM categorisation of Pervasive Developmental, or Autism Spectrum, Disorders. One is the lack of any relevant distinction between Aspergers Disorder and those with higher functioning PDD-NOS and autistic disorders.

The other DSM problem which generates much unnecessary conflict is the inclusion of these various disorders on a "spectrum".

This inclusion of substantially different disorders, with wildly different challenges, in one "spectrum" of disorders implies that the very serious challenges of persons with Autistic Disorder who lack a fundamental understanding of the world, who have very limited abstract thought and who have very little in the way of communication skills are somehow fundamentally similar to persons with good to excellent facilities in all these crucial areas of life.

The intellectual, understanding and communication deficits of the severely autistic should be recognized in a category separate from the high functioning persons who live in the media spotlight and purport to speak on their behalf, even while they deny their existence, and complain that honest description of their realities by loved ones constitutes stereotyping and "pity partying".

Research is resulting in more and more people describing autism in the plural as autism disorders with different causes and different possible treatments. The life realities for those with severe Autistic Disorder are much different than those of Ari Ne'eman, Dora Raymaker, Alex Plank, Michelle Dawson, Amanda Baggs, Jim Sinclair and other high functioning "autistics" and "Aspergians". The real life challenges of these two groups are very, very different and the DSM should reflect those differences.

As an added bonus if the DSM V modified its autism spectrum as suggested, ASAN and other HFA and Aspergers groups would not have to feel embarrassed by lower functioning, more severely affected persons with Autistic Disorder. My son Conor, who I love dearly, is one of those lower functioning, severely autistic persons that the Neurodiversity crowed is embarrassed by. I speak honestly about his challenges. I do so as the father that has loved and cared for him for 13 years and will do so as along as I am alive. I do not see his autism realities, his real life challenges and prospects reflected in the ideology and rhetoric of the "autism is a culture, a natural variation" crowd at ASAN.

It is time for the DSM to get realistic about the Autism "Spectrum".

It is time to merge High Functioning autism disorders with Aspergers Disorder and separate them from Autistic Disorder.

It is time for the DSM to recognize the importance of levels of ability to function in and understand the world and to reflect those levels in their classification of development disorders.

I say this on behalf of my son with Autistic Disorder and profound developmental delays. I say this as the person with the legal and moral right to speak on his behalf since he cannot.

autism

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When Autism Isn't A Joy - Missing Keith Kennedy Won't Call Out

Keith Kennedy

Somewhere tonight, perhaps at an art gallery in Toronto, or a literary event in New Jersey, there are some who will celebrate the joy of autism. But in the woods of Wisconsin, Keith Kennedy, an autistic man from Minnesota, with serious physical health issues, is still missing and it is feared he will not call out if he hears his name. Keith's mother told the StarTribune.com that:

"her son has been a wanderer since he was very young. She said that some camp officials didn't know he required constant vigilance."

You won't see much about some of the negative realities of the autistic persons, children and adults, who go missing, in the rhetoric of "Autism" Rights ideologues like Michelle Dawson, Ari Ne'eman or Alex Plank. Most parents of severely autistic children though, including me, are all too aware of the need for constant vigilance.

I have felt the fear of a severely autistic son gone missing; although for a much shorter time than the Kennedy's have endured. It was the most intense fear I have felt in my life. I hope it turns out well for Keith Kennedy and his family.

autism

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Autism Media Breakthrough

A major autism media breakthrough has occurred with the publication of Julie Deardorff's blog on several sites including the Chicago Tribune and the BradentonHerald.com. In Autism's road to recovery full of questions, few answers Ms Deardorff comments on debate over whether autistic children should be "recovered". She presents the perspective of Alex Plank, a high functioning person with Aspergers, attending college, and otherwise functioning very well in society. But the breakthough occurs when Ms Deardorff also presents the perspective of David Royko who tells the story of his autistic son Ben, who, at age 14, is not toilet trained and will never live independently:

Plank has a point, but he also is a functioning member of society. A film and video major at George Mason University in Virginia, Plank speaks on neurodiversity at conferences. He has a girlfriend and friends. His interests include computers, writing and acting.

Autism, however, encompasses a range of individuals, from quirky, socially awkward geniuses to those such as Ben Royko, who is still not completely toilet trained at 14, has to live in a residential school setting, has very limited functional language and will never be able to live independently.

It is rare for an article, column or blog, whether published in hard copy or online, to mention and describe a severely autistic person and the grim realities some of them face.

Full marks to Ms Deardorff, the Chicago Tribune, and other sites which publish her blog for daring to consider and discuss the invisible autistics, the severely autistic, who do not get discussed by Neurodiversity bloggers at the "Autism" Hub and are not invited, and re-invited, to appear on CNN and other feel good, ratings driven, news sources.

autism

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Alex Plank with Aspergers Does Not Want To Be Cured But He Does Not Speak for My Son with Autistic Disorder

The major media is again featuring a high functioning person with Aspergers who claims that autistics don't want to be cured. In the Chicago Tribune.com Alex Plank offers the anti-cure ideology promoted by Jim Sinclair, Michelle Dawson and Amanda Baggs, all very high functioning persons with pervasive developmental disorders which are often casually referred to as autism spectrum disorders. Mr. Plank according to the article " has a girlfriend and is interested in computers, writing and acting." So why should Mr. Plank want to be cured? I am not sure how or why Mr. Plank, or family members, sought and obtained his pervasive developmental disorder diagnosis. Given his own self description it is hard to see why he was even diagnosed in the first place but he certainly is not qualified to make the statements about autistics not wanting to be cured.

Mr. Plank according to the Tribune article:

1. Is a college student and founder of a Web Community.
2. He has a girlfriend and is interested in computers, writing and acting.
3. Had friends and had no problem with eye contact or socialization.

Given the above description I can understand why Mr. Plank would not want to be cured although I am not sure what he could be cured of since it sounds like he is an ordinary functioning individual.

What Mr. Plank is not is a person with Autistic Disorder with profound developmental delays like my son. Unlike Mr. Plank my son does have problems with language and has cognitive challenges. He can not function in the world without 24/7 supervision. Occasionally he bites himself and he has put his hands through windows and smashed holes in walls. He does not understand all the dangers of everyday life like automobile traffic and he will not be able, like the fortune blessed Mr. Plank, to live an independent life with girlfriends, college and computers.

Mr. Plank though is offended that parents like me talk about the harsh realities faced by our severely autistic children because it makes him uncomfortable as an "autistic". He is also offended that parents seek treatment and cure for their own children which, given Mr. Plank's good fortune are almost assuredly more severely disabled than he. Mr. Plank, by his own self description, does not face the severe challenges that are faced by many autistic people with actual Autistic Disorder. He should be thankful for his blessings and quit posing as a spokesperson for all "autistics".

Mr. Plank, Michelle Dawson, Amanda Baggs, Jim Sinclair and other very high functioning persons at the upper end of the "autism spectrum" should be thankful for their blessings and stop attacking parents trying to help their own children. No one wants to cure you Alex, stop trying to keep my son and other persons with Autistic Disorder down so that you can feel better about the "autistic" label you have embraced.

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