What Happens To Our Children When We Die? Maine Man Killed Himself and Adult Autistic Son in 2010

"Ginger Taylor  commented on the pressures on families with autism and on the greatest fear of many parents of autistic children: "That is the big question -- what happens to our child when we die. .... We understand their needs better than anyone else. It really breaks my heart hearing what happened to this family. It shouldn't be like that.""

The Portland Press Herald , April 28, 2010

The recent murder and attempted murder/suicide cases involving mothers and their children with severe autism disorders are not the first such tragedies to occur.  Unfortunately the same patterns are unfolding ... the refusal to seriously address the need for decent, humane residential care and treatment facilities for adults with severe autism disorders continues,  the attempts by the TPGA and other ND groups like the ASAN corporation to suppress any discussion of the harsh realities of severe autism disorders and the effects on those who suffer from them and their families are continuing.  No one is speaking about what has to be done to help the severely autistic live a decent life for fear of being subjected to irrational accusations that to do so is akin to excusing or justifying the killings.  David H. Gorski, TPGA ideologues Emily Willingham, Shannon des Roches Rosa, ASAN corporation's Ari Ne'eman and blogger Matt Carey have all been eager to attack Sharyl Atkisson and CBS for daring to portray some of the harsh realities that affected Alex Spourdalakis and his mother.

Television (Big Bang Theory, any number of Criminal Minds police investigative type shows)  and the mainstream media generally, other than CBS and  Sharyl Atkisson and a few other honest conscientious reporters, will continue to portray autism as a quirky, brilliant set of personality traits, an alternative way of thinking. The majority of autistic adults and ALL severely autistic adults will continue to live in varying levels of residential care IF they are lucky. But if no one provides humane services, help and hope to the families and persons living with severe autism challenges nothing will change and the tragedies will continue.  The TGPA and ASAN corporate crowd can pretend otherwise but we have to speak up now and provide service now to prevent further tragedies.  We know this because it has happened before and nothing was done.  Below is my blog comment from 2010 concerning the man in Gray, Maine who shot and killed himself and his 22 year old autistic son:

Dennis Hoey of  The Portland Press Herald  reports that a man in Gray, Maine shot and killed himself and his 22 year old autistic son yesterday:

"A father shot and killed his autistic son Tuesday at their home on Yarmouth Road before turning the rifle on himself, Maine State Police said. Cumberland County sheriff's deputies found the bodies of Daniel McLatchie, 44, and his son, Benjamin McLatchie, 22, in the family's driveway at 227 Yarmouth Road around 2:30 p.m.  ... State police Sgt. Chris Harriman said ...  it appeared that Daniel McLatchie was upset about what would happen to his autistic son after he and his wife died. He was a stay-at-home father, Harriman said. Daniel McLatchie's wife, Allison McLatchie, 45, was at work when the shootings happened."

Ginger Taylor the Maine author of the Adventures in Autism blog, and herself the mother of an autistic son, was interviewed and  notes the lack of services including counseling services for families with autistic children.  Ms Taylor commented on the pressures on families with autism and on the greatest fear of many parents of autistic children:

"That is the big question -- what happens to our child when we die. .... We understand their needs better than anyone else. It really breaks my heart hearing what happened to this family. It shouldn't be like that."

Many people will undoubtedly condemn Daniel McLatchie for taking his son's life.   Some will call for more services.   Few, if any, will take the real action necessary to ensure that people  with autism disorders like Benjamin McLatchie have a decent place to live when their parents are dead.    

Few, during Autism Awareness Month, and certainly not Hollywood or the main stream media giants, will look beyond the  accomplishments of a few High Functioning media celebrity "autistics" to  even acknowledge the existence of severely autistic persons living desperate lives in institutional facilities.  Even fewer will acknowledge, without mocking or attacking them, the fears of parents  obsessed with worry about what will happen to their children after they die. 

In the end, whether it is at the hands of a distraught parent, or from life in prison like, psychiatric hospitals, it is the most vulnerable, the most severely affected by autism disorders who suffer from lack of reality based autism awareness and support services.

Read more »

The Harsh Reality End of the Autism Spectrum

If you believe IACC Neurodiversity advocates  present and past,   Ari Ne'eman and Matthew Carey,  autism is not something that should be cured.  You won't see much about the harsher aspects of life with autism disorders if you read their writings. In their view autism is nothing more than a different way of thinking, not a ...  disorder ... or group of challenging symptoms for which cures are needed.

No, the enlightened  Neurodiversity thinkers who are selected to represent the mythical "autism community" at the IACC see autism in the image of the members of the ASAN Board of Directors, researchers who work with Dr. Laurent Mottron or successful entrepreneurs.  For them, and other ND True Believers,  autism's greatest horror occurs on those rare occasions when a media outlet like Slate presents a perspective of a parent whose child presents with autism, intellectual disability and seizures, to say nothing of serious self injurious behavior or unintended aggression toward family and others who actually care for them.

I was surprised today to see CNN present a video of a family using marijuana to alleviate their son's very serious self injury.  Below is the video as shown on KPTV 12 Portland, Oregon  showing some painful realities from the harsher, severe end of the autism spectrum, far away from the irrational ideology of the Neurodiversity advocates who misrepresent autism to the world:

Following is a video From Kim Oakley a gutsy, honest mother of a severely autistic son with epilepsy and author of the blog Autism, Epilepsy and Self-Injurious Behavior, also much different from the high functioning autism of  media stars,  academics and ASAN corporate directors:

 

In the DSM5 the APA is continuing the process of eliminating the intellectually disabled and most severely challenged from the autism spectrum.  They are reducing the intellectually disabled from the vast majority of the autism spectrum pre-DSM-IV to the small segment that IACC Neurodiversity rep Matthew Carey falsely presents to the world.  

This forced removal of the intellectually disabled from the autism spectrum will not help them. It will not aid us in understanding why persons with symptoms of autism, intellectual disability and epilepsy are so prevalent in association with each other.  It is not based on "science".  It is intellectually dishonest. It is cold indifference to the realities of severely autistic children and adults. 

Autistic children and mothers were once hurt by the unsubstantiated cold mothers theories of Kanner and Bettleheim. Today it is in fact parents who know of the realities facing their severely autistic children far better than the academics and Neurodiversity ideologues who are once again banishing them from sight.  

Today the real cold parents are the clinical and research professionals who are supposed to help autistic children but are abandoning those most in need of their help. They are, to borrow the APA expression, cleaving meat loaf at the joints. they are cleaving from their sanitized spectrum those who present with the most challenging autism symptoms. 

Read more »

Michigan Daily Promotes Harmful, Irrational ASAN Anti-Cure Ideology

In Autism as an identity, not a disease Michigan Daily editor Jennifer Xu  pushes the harmful Neurodiversity ideology that autism is not a disease or a disorder but an identity that should be embraced and promoted.  This self promoting ideology in fact is used to interfere with and obstruct efforts by parents seeking treatment and cure for their child's autism disorders.  Ms Xu and the Michigan Daily have, with this lengthy, one sided, article misrepresented autism disorders, particularly severe autistic disorders and the impairment they inflict on the children and adults who suffer from them.

"Autism as an identity, not a disease" features very high functioning university English professor Melanie Yergeau who serves on the board of directors of the Autistic Self-Advocacy Network, an organization composed of very high people on the autistic spectrum who promote Neurodiversity perspectives which present autism as a variation not a disorder. Ms Xu does not meaningfully present the other side of the argument by referring to the great number of persons with autism disorders, most diagnosed as children (unlike either Ms Yergeau or her founding ASAN member Ari Ne'eman whose "autism" symptoms were so mild as to escape attention until their college or adult years) for whom the challenges of autism disorders are much more serious than those faced by Ms Yergeau. 

Many children, like my son diagnosed 14 years ago at age 2, were diagnosed early because their symptoms were severe and obvious. Unlike Ms Yergeau or Mr. Ne'eman autism is very serious for most of these children and will include cognitive challenges, limited communication verbal or otherwise, self injurious behaviors and lives spent in residential care of one level or another. For Ms. Yergeau, Mr. Ne'eman and their fellow ASAN Board of Director members autism may be just an identity to be embraced. If it is not actually a disorder for them, if it does not actually limit their daily functioning or prevent them from becoming professors, corporate directors, media celebrities or otherwise impair their lives why then did they accept a medical disorder diagnosis of autism or Asperger's in the first place. 

Parents fighting to help their severely autistic children face many obstacles. One of the most obnoxious of such obstacles is the harmful ideology of ASAN Directors and other very high functioning autistic persons who feel the need to own the medical label which they embrace while telling the world it is not in fact a medical disorder. Not content to seek awareness of their specific high functioning autism realities they pretend to speak on behalf of others, including other peoples children, who are much more severely affected than they. They make public efforts to interfere with the efforts of parents seeking cure and treatment for their own severely autistic children. 

The Michigan Daily's benevolent portrayal of this harmful Neurodiversity ideology is shameful, irresponsible journalism.

Read more »

Autism, Killarney Lake and The Conor Gift

Last night there were no pictures taken but Mom and Dad were walking the trail around Killarney Lake on either side of Conor when he put his arms through each of ours and walked along  looking back and forth at Mom and Dad with a huge smile, even a bit of a giggle at times. Loads of affection for his Mom and Dad.  It is the Conor gift.

Conor will not be featured in a highlight reel of autistic young people performing amazing feats.  He will not be going to work at Dr. Laurent Mottron's lab as one of his allegedly "typical" autistic persons.  He will not stand before national media organizations in Washington, serve on US national committees or pose for the New York Magazine and tell the world that autism is a personal identity not a disability.  

The pictures above have been posted on this blog site for some time.  The picture of Conor by himself is from one of his favorite spots ... Killarney Lake.  The other two show Conor's amazing smile which, by itself, is always a gift for Mom and Dad.    Despite Conor's type of autism, the actual disability/disorder type, he brings great joy to his Mom and Dad as he did last evening at Killarney Lake. His autism, unlike Ari Ne'eman's, is a disorder and his smile is not a gift brought courtesy of his autism disorder.  It is the Conor gift. 

Read more »

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.

Read more »

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

****************************

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.

***************************

"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

****************************

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.

Read more »

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."

Read more »

Some Autism Myths Will Never Die

 Some autism myths will never die:

1. Swimming with Dolphins is an effective treatment for children with autism disorders. The article NE China uses dolphin to treat autistic children reminded me of this nonsense that has been around  for many years that swimming with Dophins has therapeutic value for children with autism. My 14  year old autistic  son Conor was diagnosed 12 years ago. The swimming with dolphins myth was around back then and, as the People's Daily article shows, is still swimming around today.

2. Autism isn't really increasing.  No matter how  far away we move from the DSM-IV changes in 1994 we still see many  like Dr. James Coplan rely on the DSM-IV autism definition changes to deny that the incredible increases in autism since then including recent  drastic upward estimates from the CDC of an increase from 1 in 150 to 1 in 110 is due entirely to the now long ago DSM changes of 1994.  And of course the DSM5 will soon be arriving to further obscure the issue and give the Coplans of the world another straw to cling to.

3.Autism Is 100% genetic   As Teresa Binstock said so succinctly over a decade ago in describing the public health authorities' insistence that autism research be directed toward genetic based research it's gotta be genetic. Decades of genetic focused autism research have resulted in a recent massive study report which tells us that .... there is no single genetic autism factor and that therefore ... autism is genetic. YUP let's keep studying the genetic laundry of autistic children and ignoring environmental toxins including those injected into pregnant women and young children as possible causes of autism disorders.  And if ignoring environmental factors, including possible vaccine factors doesn't work lets attack and demean celebrity autism parents for daring to question the safety of vaccine cocktails and environmental contaminants. 

4. Ari Knows Best. Parents evidence and decisions about their children's autism is anecdotal, selfish, emotional, hysterical and untrustworthy.  So let's talk to the latest publicity seeking high functioning person who might be autistic to learn how the autistic mind works. From Jim Sinclair to Ari Ne'eman and all points in between parents shouldn't decide whether their child is high or low functioning, shouldn't talk about their child's autism disorder like it's a ... disorder ... or a medical diagnosis  or even use terms like functioning. Parents should not seek to treat and cure their own children. After all, Ari Ne'eman, a very high functioning, very well connected recent University graduate knows better than Harold Doherty and other parents of autistic children severely affected by autism what is good for our children. Right? Ari says my son doesn't want to be cured? I guess this person with nothing in common with my son, who doesn't know him and has no responsibility for his care should decide right? Apparently the Obama administration thinks so appointing  Mr. Ne'eman, who denies autism is a medical or real disability, and should not be cured, to prominent national US  disability and autism committees.

From swimming with Dolphins to swimming with Jim, Temple, Michelle, Amanda and Ari some autism myths will never die.

Read more »

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.

Read more »

CBS Utters Autism Profanities: The C Word and the P Word

CBS may be asking for trouble with its use of words deemed profane by self appointed spokespersons on behalf of severely autistic children and adults. In one article alone Autism Challenges American Science to Seek Cure CBS utters two words, "cure" and "parents", that are considered vulgar, unfit for discussion  and morally reprehensible by President Obama's disability council nominee Ari Ne'eman and other very high functioning leaders of Autism's Neurodiversity sect who do not consider autism a disorder or a disability that should be cured and who oppose efforts by parents seeking cures for their own autistic children. To compound its poor behavior CBS even interviewed, and quoted, some parents of autistic children.

Parents seeking cures for their children's autism disorders being given a platform by CBS News?

Oh, the horror of it all!

Read more »

GWU Medical Center Study Suggests Autism May Be Treatable

"As the mother of a now 22-year-old son with an autism spectrum disorder, I hope our studies, as well as those of others, will lead to therapies that are designed to address specific deficiencies that are caused by autism, thus improving the lives of affected individuals.  Since autism is very diverse in the array of symptoms present in any given individual, it is first necessary to be able to identify specific deficits in each individual in order to design and then prescribe the best treatment."

Professor Valerie Hu, George Washington University, Researcher

As reported on UPI.com, Study: Autism may be amenable to treatment, Professor Hu was commenting on the recent GWU study that claims to have found a way to identify autism disorder using blood. The study also discovered that drugs that affect the methylation** state of genes, drugs currently used in fighting cancer,  might also reverse specific autism effects. 

Successful, high functioning persons with Aspergers diagnoses, like university student and Obama  appointee Ari Ne'eman, and businessman, author and speaker John Elder Robison, who do not want parents to describe autism disorders honestly, and who do not want  us to  seek to cure our  own children of their autism disorders  might be alarmed by studies such as the GWU study and by Professor Hu's comments.  This father of a 14 year old boy severely affected by his Autistic Disorder is very pleased to see such studies taking place.

Thank you Professor Hu, and GWU Medical Center,  for your efforts to find treatments to help our autistic loved ones who suffer from the effects of  their autism disorders.  

On behalf of my son, Conor, I say thank you.

**For a helpful (to this humble layperson) explanation of methylation, genes and various diseases and disorders I suggest Silencing of the Genes on the Genome News Network

Read more »

Autism Rising, Environmental Causes of Autism Disorders, and the Top Autism Interview of the 2000-2009 Decade

The autism interview of the decade, from the perspective of this father of a severely autistic 14 year old boy seeking real answers and future directions concerning my sons Autistic Disorder,  is the David Kirby interview with Dr. Tom Insel in December 2009. There are many contentious debates in discussions of autism disorders including the debate over whether the startling increases in rates of autism diagnoses over the past decade from 1 in 1000 to 1 in 500 to 1 in 110 reflects a real increase in autism or whether they are attributable entirely to the diagnostic  manual changes in the early 1990's combined with increased awareness and the alleged existence of autism services motivating parents to seek autism diagnoses.  Tied directly to this issue is the question of whether autism is caused entirely by genetic factors or whether environmental factors are also involved.

David Kirby's recent interview with Dr. Tom Insel, head of the IACC, and not known to be a celebrity actress, an anti-vaxxer or an hysterical, rage filled parent of a child with an autism disorder,  sheds much light on these issues. I encourage everyone, including reporters and journalists with Mainstream Media outlets and anti autism cure Neurodiversity ideologues like Obama disability nominee Ari Ne'eman, to read the transcript of the Kirby interview with Dr. Insel in its entirety.  Some important points made by Dr. Insel in that interview:

"So how much of the doubling or - in this case tenfold increase over a decade - how much of it is related to change in diagnosis, how much to ascertainment? It looks like about 24 percent of the California increase can be attributed to something like a change in diagnosis criteria. They are beginning to use multiple diagnoses. So that children before, who were listed simply as mentally retarded rather than autism - but they had both - are now logged in with both. But that really caps out at around 24 percent. There’s probably another piece of this, which globally could be attributed to ascertainment. But that caps out at around 16 percent, or something like that. And when you put all of that together, you are still well below explaining 50 percent of the increase.

So what does that mean? It means that, as far as I can tell, the burden of proof is upon anybody who feels that there is NOT a real increase here in the number of kids affected." 

...

This tells you that, you really have to take this very seriously. From everything they are looking at, this is not something that can be explained away by methodology, by diagnosis. Some piece of it can, but the whole thing can’t.

...

 Yes. I don’t think anybody is arguing that it is 100-percent genetic. I mean, I think that there are just a lot of questions that this raises. And I don’t think in those terms, exactly, that it’s either genetic or it’s environmental. From my perspective, it’s almost always going to be both. And the only question is: How do you nail down this interaction, how do you go after it?

...

There is no question that there has got to be an environmental component here. The problem for us has been trying to find the right way to get our hands around it, and to identify what that is most likely related to." 

The acknowledgements by Dr. Insel, head of the Interagency Autism Coordinating Committee, (1) that autism is really increasing and (2) that there is an environmental component to that increase are huge developments in our attempts to understand autism disorders and what is causing them. The assumption for over a decade has been that autism is 100% genetic and that none of the autism increase is real.  Funding of autism research has reflected those twin assumptions.  Now is the time to face autism reality, to start researching and understanding the interaction of genetic and environmental factors that cause and contribute to autism disorders. With the knowledge gained from understanding what causes autism disorders we will be much better able to identify treatments and cures to help those afflicted by these serious disorders.

David Kirby's December 2009 interview with IACC Director Tom Insel easily ranks as the top autism interview of the 2000-2009 decade ... in the opinion of this humble father of a son severely affected by Autistic Disorder. 

Read more »

Autism Cure and Recovery and Obama's Divisive Disability Nominee

One of the great surprises of the Obama administration, for this Canadian father of a 14  year old boy with severe Autistic Disorder, and long time autism advocate, is the nomination of a divisive, confrontational but very high functioning young university student with Aspergers to a prominent US disability council.  Mr. Obama won respect around the world, including here in Canada, for his ability to reach across traditional political battle lines to move forward with a consensus.   Yet, with the nomination of Ari Ne'eman President Obama has nominated a young man of limited experience with, or knowledge of, autism disorders and absolutely no experience with severe Autistic Disorders who opposes curing autism, and mocks and ridicules the concept of recovery from autism disorders  despite the work done over many years by people like Dr. Doreen Granpeesheh of CARD to do exactly that.

Mr. Ne'eman also attacks the Autism Speaks organization which has raised autism awareness substantially by its many high profile media events and by its involvement in the establishment of World Autism Awareness Day recognized by the United Nations. Mr. Ne'eman himself has found an organization led by people just like him ... very high functioning autistic persons or persons with Aspergers.   He has displayed in his public comments no understanding of the serious life long challenges facing severely autistic children and adults. 

Nor has he shown any respect whatsoever for the role of parents in raising severely autistic children to live the most fulfilling lives possible and the wishes of many of them that research aimed at finding autism treatments and cures continue.  Mr. Ne'eman, the young university student, views the "autism spectrum" as an entity of which he is the natural leader. In Mr.Ne'eman's mind he is better suited as a person with an extremely mild form of autism spectrum disorder to decide what is important for severely autistic children than the parents and families who care for and love them.  For President Obama to embrace this divisive ego  as a disability council nominee is bizarre and unsettling. 

My opinion carries zero weight in US political matters.  Perhaps as a Canadian my opinion actually carries a negative factor. But as the father of a severely autistic son who was diagnosed with his Autistic Disorder before Mr. Ne'eman received his very mild Aspergers diagnosis, and who has been involved in autism advocacy for a dozen years, I know that this appointment will cause great harm to the future prospects of the severely autistic in the US and elsewhere in the world beginning right here in Canada where US influence is not an abstraction but a fact of daily life.  For many years US autism research, including the research conducted by Dr. Ivar Lovaas, and the work done at places like CARD and the May Institute, have been huge positive influences in helping Canadian children with autism disorders including my son.  It now looks as though US autism thinking is taking a turn for the worse and that will be felt here in Canada... to the detriment of children with severe Autistic Disorder ... children like my son Conor.

Read more »

Daniel Can't Eat Because of Autism but Obama Disability Nominee Ari Ne'eman Says Don't Cure Autism

US President Obama's disability nominee Ari Ne'eman does not believe that autism should be cured.  To Mr. Ne'eman, and his supporters,  curing autism is morally reprehensible.  Mr. Ne'eman,  a very high functioning university student with Aspergers Disorder, has every right to refuse treatment or cure for his Aspergers which he does not consider to be a disability.  But does he have the right to insist that other people's children should not be cured of autism disorders, that no research be conducted to develop treatment and cures?

Some children with autism suffer much more than teasing from fellow students, as Mr. Ne'eman apparently once did,  as a result of their disorders.  Some do not understand the dangers of daily life, or even understand language beyond a very simple level.  Some engage in serious self injury and some ... like 3 year old Daniel will not eat because of their autism disorder.  To all of these real people, real children, other people's children, with autism disorders, Obama nominee Ari Ne'eman says thou shalt not be cured for to do so is morally reprehensible.  And with his nomination, and eventual appointment, to a high profile US disability council Mr. Ne'eman's commandment will inevitably grow in influence.

Daniel's story, and it is not unique, is told at nottingham.co.uk:

"EATING is something most children take for granted – but it is something little Daniel Harrison may never do again.

The three-year-old from Carlton was diagnosed with autism two years ago after his parents noticed he was not developing as normal.

One of the side effects of his condition is a severe form of acid reflux, when acid from the stomach leaks up into the gullet.

It means Daniel went "up the wall" whenever he ate anything because of he associated eating with the pain of being sick.

He can now only take in food through a tube inserted into his stomach – and his parents say he may never eat normally again."

Movies, major media organizations and now the President of the United States, like to represent people with autism as high functioning success stories like university student Ari Ne'eman.  President Obama apparently agrees with Mr. Ne'eman's  opposition to curing autism disorders, with his view that autism is not a real disability, or he would not have nominated him to an influential disability council.  

The US President is embracing a young man who does not believe that Daniel and others who suffer from the serious, life restricting,  and often times dangerous, effects of autism disorders should be cured.  President Obama is joining Ari Ne'eman in saying to Daniel, his parents and others affected by the severe consequences of autism disorders ... thou shalt not be cured.

Read more »

Ari Ne'eman Opposes Freedom of Choice of Persons with Autism Disorders and Their Families

Ari Ne'eman, and all of those persons who oppose research aimed at finding treatments and cures for autism  disorders,  oppose the right of choice of autistic persons and their families.  Mr. Ne'eman and his supporters oppose the right of other autistic persons to seek to be cured of their autism disorders.   

In Mr. Ne'eman's case he has clearly stated that HE does not want to be cured of his Aspergers Disorder and I respect that right as I am sure everyone does who is involved in debates about his disability council appointment.  Unfortunately Mr. Ne'eman takes it a step too far and asserts that not only does he not want to be cured but other persons with autism disorders do not want to be cured, should not be cured and should not have the option and right to choose not to be cured.  

When Mr. Ne'eman says to his many high profile media contacts that WE do not want to be cured he purports to represent all persons with autism disorders, even those much more severely affected by autism than he is, which is almost everyone with an autism spectrum disorder.  He has no such authority to speak on their behalf.  When he makes such statements he is attempting to prevent the research from being done that  is necessary to finding treatments and cures for autism disorders thus hoping to deprive autistic persons and their families of the option and the right to choose to be cured.

When he protests parent driven organizations seeking to raise funds for research aimed at curing autism disorders Mr. Ne'eman is again seeking to prevent that research and to deprive other persons with autism disorders of their right to choose not to be cured.  When he describes as morally reprehensible, as he has done, efforts to cure autism disorders, Mr. Ne'eman, the high functioning university student with Aspergers is trying to deprive other persons with autism disorders, or parents rightfully acting on their behalf, of the option and right to choose to be cured of their autism disorders.

Mr. Ne'eman does not respect the rights of other autistic persons to choose to be cured, to overcome the limitations of their autism disorders. He does not respect the right of parents acting on behalf of their autistic children, some with severe Autistic Disorder, to overcome those deficits through treatment and cure. 

When it comes to cure oriented autism research Mr. Ne'eman seeks to deny to other persons with autism disorders the same freedom of choice ... to be cured or not ... that he asserts on his own behalf.

I am astonished and disappointed that US President Obama, who I greatly admire for so many other reasons, would appoint to an important disability council position a person who opposes the right of choice of other persons with autism disorders and the parents who often, by necessity and by law, act on their behalf.

Read more »

Obama Disability Nominee Ne'eman Says Curing Autism Disorders is Morally Reprehensible

The Autism Action Network has called for its American readers to contact their Senators to voice their opposition to US President Obama's disability council nominee Ari Ne'eman. I wish them success although from what I understand the nomination is unlikely to be disturbed.  This Canadian father of a severely autistic son  is very disappointed that Mr. Ne'eman will ultimately be approved and will be in a position to influence autism policies in the US and consequently around the world.  

I have followed with great interest the US Health Care debate and President Obama's historic struggle to bring health care to all Americans.  I am perplexed that the great US health care president would, at the same time, appoint  to an important disability council  a very high functioning person with Aspergers who does not believe that autism is a medical disability or disorder and  is opposed to curing autism spectrum disorders.  

Mr. Ari Ne'eman does not view autism disorders as disorders in a medical sense  notwithstanding his own medical diagnosis of Aspergers Disorder.  Nor does he restrict himself to  rejecting a cure for himself, or for other very high functioning persons with Aspergers Disorder.  He tells the world that all autistic persons do not want to be cured.  

The Autism Action Network has gathered a number of Mr. Ne'eman's more outrageous and offensive statements:

"June 10, 2008 on Good Morning America, Neeman said, "We do not think to aim for a cure is the right approach to take."

 

December 10, 2009 interview with the CBC, "Autism is currently viewed as a disease of the medical model---Something to be cured or eliminated. That doesn't reflect how we view ourselves, that doesn't reflect our realities."

 

In his essay Equality Demands Responsibility, 2006, Ne'eman wrote, "But if we are to demand equal legitimacy, if we are to assert that a 'cure' is not only unnecessary and undesirable but morally reprehensible, then we must accept for ourselves equal responsibilities.""

This very high functioning gentleman does not seem troubled by his Aspergers disorder but there are many low functioning persons with severe Autistic Disorder who do suffer. Some never survive to the age of 12, the age at which Mr. Ne'eman apparently received his Aspergers diagnosis. Some are lost forever in local traffic, neighborhood pools or snow storms. Some require intensive therapy to prevent dangerous self injurious behavior.  Some live their lives in institutional and residential facilities  dependent on the care of strangers.  The young university student with  a very mild variety of Aspergers disorder opposes curing those with more severe, restrictive types of autistic disorders and purports, with no common experience and no legitimacy,  to speak on their behalf.

Mr. Ne'eman speaks about "our" views, "our" realities, how "we" view "ourselves".  My son has an Autistic Disorder diagnosis, assessed with profound developmental delays. He is severely autistic.  Mr. Ne'eman the high functioning young university student with Aspergers, and the abilities to interact regularly with the New Yorker magazine, the NYT and Canada's CBC AND negotiate socially in Washington DC political circles  does not know how my son thinks or views himself. Mr. Ne'eman does not have any knowledge whatsoever of my severely autistic son's realities.  When he claims to speak on behalf of all persons with Autism Spectrum Disorders he is misrepresenting himself, and autism disorders, to the world.

Personally, I find Mr. Ne'eman's opposition to curing the autism disorders that afflict so many children and adults to be morally reprehensible and I am very disappointed in US President Obama for appointing him to a position from which he can influence the lives of so many persons with autism disorders.

Read more »

New York Times Glosses Over Anti-Cure, Anti-Family Positions of Obama Disability Nominee Ari Ne'eman

I do not pretend to be a fan of the New York Times  autism coverage but I acknowledge that its article on Obama disability nominee Ari Ne'eman gets it ... about  half right and for that  this humble autism dad awards the NYT a D-  grade.   I must admit that  the NYT made a better effort than usual in  providing some semblance of objective balance before telling parents what autism is all about in Nominee to Disability Council Is Lightning Rod for Dispute on Views of Autism.  But the NYT still fails to demonstrate actual knowledge of an important autism research issue and fails to acknowledge the biggest issue of all ... the right and responsibility of parents to represent the interests of their children;  not some stranger with no professional expertise and little in common with their children.

The NYT does gently acknowledge, while down playing it somewhat,  that Mr. Ne'eman is a high functioning young university student of obvious intelligence and  excellent communication  and organizational abilities unlike many of the severely autistic children and adults on whose behalf he claims to speak.  He can, unlike  severely autistic persons like my son, operate smoothly  in the worlds of  high powered Washington politics and  the ultra influential New York media . What the NYT fails to fully address is the fact that Mr. Ne'eman purports to speak on behalf of other people's children and that he does not show respect for the role of parents in raising, caring for,  and representing the best interests of their children..... unless of course they agree with his views of what is best for their own children.  

The NYT also presents Mr. Ne'emans simplistic and erroneous views about autism research.  It is true that most autism research is genetically oriented.  Public health authorities that influence autism research funding decisions have insisted on genetically based autism research for more than a decade as described by Teresa Binstock who called that mindset the "It's Gotta Be Genetic" model of autism.  What the article misses by quoting Mr. Ne'eman's views of autism research is the growing push for environmentally based autism research and for treatments and cures other than termination of  "high autism risk" pregnancies.

Dr. Jon Poling, neurologist,  is one of  the most famous and well informed parents who has advocated for exploring environmental causes of autism ... and for seeking treatment and cures.  His comments in the Atlanta Journal Constitution present a much more complete and informed views of the direction that autism research should go than the narrow perspective offered by Mr. Ne'eman and the NYT:

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. ... only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda.

Dr. Jon Poling, Atlanta Journal Constitution, March 13, 2009

The NYT cites Mr. Ne'eman's reduction of autism research to research aimed at  pre-natal detection of autism that could lead to early terminations of pregnancies in cases of suspected autism.  Mr. Ne'eman may honestly believe that parents and others seeking causes and cures for autism are so narrowly focused but it is inexcusable for the New York Times to present that view without providing more information about autism research to the public.  Without getting into the views of different camps in the autism wars the NYT could at least have told its readers around  the world about the IACC's strategic autism research plans readily available on line at:

The 2010 Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder Research - January 19, 2010

The introduction to the IACC strategic plan states:

It is imperative that resources be devoted to research commensurate with the public health need. Specifically, we need research that deepens our understanding of ASD, including the complex genetic and environmental factors that play a role in its causation; development of improved ASD diagnostic approaches and treatments; and science to enhance the level of services and supports available to people with ASD, their families and caregivers. With current scientific knowledge and tools, we have unprecedented potential for discoveries that will improve the quality of life for people with ASD.

When Mr. Ne'eman tells the world that WE don't want to be cured he purports to speak on behalf of  all persons with autism disorders including the severely disabled. When Mr. Ne'eman protests a video by parents describing autism from their perspectives as parents of severely autistic children he is opposing their right to speak on behalf of their children. When he protests Autism Speaks he is opposing efforts to increase autism awareness and raise funds for autism research goals supported by many parents and families with autistic loved ones.

Hopefully some day the NYT will have an epiphany and come to understand that Mr. Ne'eman opposes the right and responsibility of parents of children with autism disorders to seek treatment and cure for their own children.  He is obstructing their efforts to give their children the best, fullest lives they can.  

Hopefully someday the NYT will come to realize its own role in promoting such efforts to interfere with and obstruct the efforts of families trying to help their own autistic children.

Read more »

Discrimination Against Persons with Low Functioning Autism

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

-  Ari Ne'eman, Founding President, Autistic Self Advocacy Network, Obama Administration Disability Appointee, New York Times, Nov 3, 2009

I am typically the only one on ASAN's board to interject the issues of the LFA, because my son is one. Whenever I do this, I am attacked by a few, including Clay Adams. Clay doesn't like it when I discuss the LFAs on ASAN's board. Neither do a lot of people. I wouldn't be surprised if I was eventually kicked off that board at some point. I'm the only one that I know of that has ever been put into moderation mode there. The fact is, that Clay Adams has no interest in the LFA and never has.

There are others though that do think LFA needs more representation and advocacy on that board and in the online autism community. However, most don't want to really expose themselves for fear of being attacked like I have. They see what has happened to me and they don't want any of that to happen to themselves.

- Kent Adams, ASAN Board Member, Father of Son with Low Functioning Autism, quoted on  Autism's Gadfly Comment Section,  February 3, 2010

Any mention of Low Functioning Autism, autism and intellectual disability,  or autism and cognitive impairment is often met by hostility from some  persons with HFA/Asperger's.  Many of these persons identify with being on the "autism spectrum" as does Ari Ne'eman, the very high functioning university student  with Asperger's.  

Videos that portray the harsher realities of life for lower functioning autsitic persons are met with very high profile, media seeking protests by Ari Ne'eman and others who like to identify with the autism spectrum. ASAN which claims to be an autism "self" advocacy organization has no actual low functioning autistic persons,  on their Board of Directors, for the obvious reason that such a role would probably be beyond the ability level of persons with low functioning autism disorders.  As the comment by Kent Adams, a father of a low functioning autistic boy, indicates he is pressured to refrain from raising LFA as a topic for discussion by the ASAN Board.

The ASAN Board is comprised almost entirely of very high functioning persons "on the spectrum", lawyers, technicians, writers and university students.  ASAN has a very broad definition of autism going beyond persons with an autism diagnosis to include those who simply identify with  autism :

The terms "Autistic" and "autism spectrum" often are used to refer inclusively to people who have a diagnosis in any of the official categories (see Diagnosing Autism) or who self-identify with the Autistic community.

ASAN's broad definition of autism helps extinguish the concept of autism as a medical disorder or diagnosis and helps include higher functioning persons with no actual autism diagnosis.  At the same time the ASAN autism definition mentions intellectual disability only in a limited sense of difficulty with communication and describes such difficulty as a "different way of thinking" suggesting that it is usually accompanied by being gifted in other areas:

2. Non-standard ways of learning and approaching problem solving. For example, learning "difficult" tasks (e.g. calculus) before "simple" tasks (e.g. addition), difficulty with "executive functions," or being simultaneously gifted at tasks requiring fluid intelligence and intellectually disabled at tasks requiring verbal skills.

For persons who like to identify with "autism", whatever that means to them, it is easy to accept the unsubstantiated allegations that Mozart, Einstein, Van Gogh and other historical geniuses were autistic. When credible sources such as the CDC and CPA are cited to back up the claim that large numbers of persons with Autistic Disorder diagnoses are also intellectually disabled some bloggers with HFA and Asperger's, and even some autism researchers, react by dismissing or ignoring the information.  Kent Adams, noted above, has described receiving hostile reactions when he attempted to raise Low Functioning Autism issues on the ASAN board. 

The denial of the existence of Low Functioning Autistic persons, persons with Intellectual Disabilities  and cognitive impairment,  is discrimination. The reason why some persons with HFA and Asperger's  refuse to recognize the realities of large numbers of low functioning autistic persons while embracing undiagnosed higher functioning persons  is clear:

Identifying with "autism" is cool, it can make the person identifying with autism feel better in some way.  Who wouldn't want to identify with a Mozart or an Einstein? 

Identifying with those who are intellectually disabled is not cool. Identifying with those who live their lives dependent on the care of others, some in very secure institutions ... that's not so cool.

autism

Read more »

Obama Disability Nominee Questioned About His Views that Autism Disorders are Not Medical Disorders and Should Not be Cured

President Barack Obama's disability nominee Ari Ne'eman is facing questioning concerning his view that autism is a  socially created disability  not a medical disorder or  disability and his well known opposition to curing autism disorders and to investing in cure oriented autism research. His representative character as an autism spokesperson is also questioned in light of the fact that he has an Aspergers diagnosis, was only diagnosed at age 12,  and is very high functioning:

" According to your website you received a diagnosis of Asperger’s Syndrome at the age of twelve, you also appear to be a very articulate young man attending college and launching a successful career. Please explain how your circumstances equip you to understand and represent low-functioning people with autism and their caregivers?"

Age of Autism sets out the letter from John Gilmore of the Autism Action Network, formerly A-Champ, requesting clarification on Mr. Ne'emans views. Age of Autism also reports Mr. Ne'eman's statement that he  is at present unable to address these concerns as he is following White House orders not to speak publicly on these important issues pending completion of the confirmation process:

"  I was asked recently by the White House to avoid any further public appearances and speaking to the media until after my confirmation process is complete and I was checking with them as to whether or not it would be acceptable for me to respond to the questions you have sent. Regrettably, they've asked that I avoid answering any questionnaires not provided to me by Senate offices as part of the confirmation process. As a result, I cannot submit my responses right now."

I am not sure why a well educated young man of obvious high intelligence, excellent communication skills and advanced social skills that enable him to function so well in Washington World even has an Asperger's diagnosis let alone feels entitled to speak as a representative of those severely disabled by Autistic Disorder deficits, those who can barely communicate, with or without any assistive technology, those who injure themselves seriously out of frustration,  perish as a result of being lost in a snow storm or live out their lives in institutional care.  The New Yorker Magazine's face of autism is doing well hanging out with his Washington buddies but he does not resemble in any way people with severe Autistic Disorder.

President Obama's appointment of a media star, anti autism cure, very high functioning university student with Aspergers does not auger well for future research aimed at understanding the causes of autism and future treatments and cures.  When it comes to hoping for some real autism science, some cause and treatment oriented autism research President Obama has spoken loud and clear by nominating as a disability representative a  creation of the media elite.  He has clearly told parents hoping for cures for their children "NO YOU CAN'T".

autism

Read more »