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.

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. 

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.

Firefighters Find and Rescue Man With Autism Lost in Sewer System

Firefighters in Downers Grove Illinois have found and rescued a 20 year old man with autism whose parents reported that he might be lost in the sewer system.  Apparently after being notified by the family that the man might be in the sewer system the firefighters lifted man hole covers looking for the man. The article on mysuburbanlife.com, Downer's Grove Reporter, does not specify how severe the man's autism was, stating only that he was deaf,  but given the facts it is a safe assumption that he is functionally impaired by his autism disorder.  This father of a severely autistic 15 year old son  is very happy to hear of the man's safe return to his family.

No word yet on whether the very high functioning members of the Board of Directors of the Autism Self Advocacy Network who campaign, in the harsh glare of major media attention and in high level political and government institutions,  against curing autism disorders  have complained about the firefighters interference with the man's right to roam as a free ranging "autie" or "aspie".

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.

Dear USA: This Canadian Father With a Severely Autistic Son Says Thank You for Combating Autism

"in order to continue meeting the needs of people with autism, the Combating Autism Act

must be fully reauthorized. We still have a long way to go. Working collaboratively with
important partners, the Affordable Care Act and the Combating Autism Act will allow   
 us to research and develop and refine vital treatments

Kathleen Sebelius,  US Secretary of Health and Human Services, April 25, 2011

Autism is a severe and limiting medical disorder for which treatments and cures must be found through solid, focused research.  Autism is a disorder which should be combated so that those who suffer from it can live fuller, more independent, lives. Here in Canada we do not have a serious, focused national autism strategy or recognition of the need for a national effort to combat autism disorders.  We are lucky that our  neighbors in the US have had the good sense and determination  to try and address and combat autism disorders through research  efforts under the Combating Autism Act.

This Canadian  thinks of many things when I think of the USA.  Some of these things are negative. Most are positive, very positive. I think of our neighbors as confident, freedom loving people who constantly seek to better themselves. I think of Americans as people with strong commitments to family.  I think of Americans as people who are afraid of no challenge as amply demonstrated by the audacious and successful commitment by former President John F. Kennedy to put men on the moon by the end of the 1960's.  Autism is a serious disorder which impairs and restricts the lives of those who suffer from it.  The continued efforts in the US, under the provisions of the Combating Autism Act, have helped direct research toward understanding and finding treatments and cures for autism.  It is of great  importance for everyone affected by the serious challenges of autism, including Canadians, that those efforts, and the Combating Autism Act, continue.

This Canadian father with a severely autistic son says thank you to our American friends for the efforts made under the Combating Autism Act.  I  hope you decide to continue this important undertaking. It may not be as glamorous as putting men on the moon but, for many affected by autism and their families, it is of fundamental importance.

Criteria D in the DSM-5's New Autism Spectrum Disorder: Limited and Impaired Everyday Functioning

With the  January 26, 2011, revision of the  new Autism Spectrum Disorder category in the DSM-5 will some high functioning persons who currently have an Autism or Aspergers diagnosis  actually lose their autism diagnosis because they do not meet  criteria D,"limited and impaired daily functioning", of the 4 ASD mandatory criteria?

"299.00 Autistic Disorder                   Revised January 26, 2011

Autism Spectrum Disorder

Must meet criteria A, B, C, and D:

A.    Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:

1.     Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,

2.     Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.

3.     Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and  in making friends  to an apparent absence of interest in people

B.    Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of  the following:

1.     Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases). 

2.     Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).

3.     Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

4.     Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).

C.    Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

D.         Symptoms together limit and impair everyday functioning."

Will some well known, self described, autism self advocates lose their autism diagnosis when the DSM-5 is published?  Can persons capable of raising a family, performing in rock bands,  driving land rovers, running  successful businesses, serving on the boards and committees of organizations such as ASAN, Autism Speaks and the IACC, graduating with university degrees, appearing before high appellate courts and government committees, publishing books, conducting research, and appearing in print and broadcast media interviews truly be considered to be limited and impaired in their everyday functioning? Will ANY members of the ASAN Board of Directors be considered to be limited and impaired in their everyday functioning?

Look for some intense reaction to the limited and impaired everyday functioning requirement.  Do not be surprised to see a high pressure campaign to eliminate criteria D.

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."

Autism Reality News Beat: Autism Speaks Guest Comment by Professor Valerie Hu

In  GWU Medical Center Study Suggests Autism May Be Treatable  I commented on the press release highlighting the work of Professor Valerie Hu and her colleagues at George Washington University, who claim to have found a way to identify autism disorder using blood. Their study also discovered that drugs that affect the methylation state of genes, drugs currently used in fighting cancer,  might also reverse specific autism effects.  This autism news provides some badly needed good news about possible autism treatments.  

In Beyond genetics: What the new fields of functional genomics and epigenetics are revealing about autism  Autism Speaks offers a guest post from Professor Valerie Hu, a Professor of Biochemistry and Molecular Biology at The George Washington University Medical Center  as well as a mother of a son with ASD.  The comment also offers links to two studies by Professor Hu and her colleagues at GWU. 

Professor Hu describes the functional genomics approach to studying genes employed by the GWU team.  This approach focuses on gene expression explained as the activities of the genes.   The team has in fact published two studies which together, using the functional genomics approach "illustrate two different “epigenetic” mechanisms controlling gene activity in autism that lie beyond genetic mutations".  The studies suggest that some of the symptoms of autism may be reversible by reversing or controlling gene activities.

The Autism Tissue Program of Autism Speaks provided brain tissues used in one of the studies.  I highlight this point here because of the hostility directed at Autism Speaks from anti-cure interest groups like ASAN.  Studies like those by Professor Hu and George Washington University may actually help autistic persons like my son.  Autism Speaks deserves recognition for its contribution to such studies and I thank them for their contribution.

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

Autism Outreach Group Excludes Low Functioning, Severely Autistic Persons

A group of persons with autism spectrum disorders has been formed in the Tri-Cities Washington area but membership is for persons with High Functioning Autism and Aspergers disorders. Low functioning, severely autistic persons are not included in the group. In  New group forms for high-functioning autistic Tri-Citians  The News Tribune reports on the founding of the  Three Rivers Autistic Outreach a social group for persons with High Functioning Autism and Aspergers:

""   Ellen, whose autistic diagnosis is pervasive atypical development disorder, is a high school and college graduate and trained as a paralegal.

Meier learned of her Asperger's condition a few years ago when her husband suggested she be tested for autism.

But when Meier and Ellen became acquainted after meeting at an autism picnic, the social connection clicked.

"It's a very isolating condition," said Ellen. But once people with autism who are high-functioning link up socially, their lives have a new dimension.

"We have a unique understanding, we laugh together. We don't notice the twitches. We can just be ourselves," she said.

"Without having people look at you funny," Peters added.

Another reason Peters formed the peer group is that plenty of support can be found for young autistic children, but there isn't much for autistic young adults, particularly high-functioning people.

"The high end (of autism) gets ignored. You can't find others so easily," Peters said.

I do not intend this commentary as a criticism of the members of this group with High Functioning Autism and Aspergers Disorder. To the contrary,  I applaud their common sense and honesty in describing themselves accurately as a group for High Functioning members of the autism spectrum.

I wish the same accuracy, common sense and honesty would be displayed by the brilliant members of the ASAN Board of Directors all of whom are persons with High Functioning Autism and Aspergers.  In the same vein I wish the high powered mainstream media  that dotes on Obama disability appointee Ari Ne'eman would understand that while  Mr. Ne'eman would undoubtedly fit in at gatherings of the Three Rivers Autistic Outreach my son with severe Autistic Disorder  will never be able to function in such a setting.

The DSM re-designers would be well advised to consider a clear demarcation in the DSM V between those with low functioning, severe Autistic Disorder, including the 75-80% who are cognitively impaired, on one side and High Functioning Autism and Aspergers Disorder on the other side.  It is a divide acknowledged openly and honestly by the Three Rivers Autistic Outreach group. It is a divide which exists on, but is not openly acknowledged by .the ASAN "Autistic Self Advocacy Network"  Board of Directors.

autism

Obama Disability Nominee Doesn't View Autism as a Real Disability, Marginalizes Role of Parents, Caregivers

US President Barack Obama has nominated Ari Ne'eman, a  University student with an apparently very mild form of Aspergers Disorder, to a national disability council.  Since that nomination was made public Mr. Ne'eman has issued statements through friendly bloggers, all too willing to uncritically promote his views,  stating that he DOES see autism as a disability.  Mr. Ne'eman in fact only sees autism disorders as disabilities in the social model sense, in the sense  that society fails to accommodate persons with autism, thereby creating the disability.

The following quote is from a June 2008 NPR  (obviously well before he was nominated by US President Obama) interview:

"As its name suggests, the Autistic Self-Advocacy Network aims to help people with the disorder represent themselves, instead of relying on families and care providers to speak for them. They share a credo with other disability groups: "Nothing about us without us."

Ne'em describes Asperger's and autism as disabilities — but with a twist. "We're disabled by society," he says. "What disables us is, for instance, an education system that's only designed to meet the needs of one kind of student, or societal prejudices which say that autistic people will never be able to live in a community."

[Highlighting added for emphasis - HLD]

Ari Ne'eman, a very high functioning young University student with Aspergers, who is capable of communicating with NPR, the New Yorker, CBC, Newsweek, and Washington politicians, officials and dignitaries,  including the First Lady of the United States, feels entitled to speak authoritatively about Aspergers AND autism, including the 75-80% of persons with Autistic Disorder and cognitive impairments.  He does so on the premise that autism is a disability ONLY because of society's  treatment of people with autism whatever he means by the terms autism and Aspergers.  It is not clear what he in fact means by these terms since he does not endorse the medical model of autism disability.

Apart from not viewing autism disorders as medical disabilities  the  University student with Aspergers feels that his views about Autistic Disorder and other autism  spectrum disorders should be given greater weight in relation to autistic children than the parents and caregivers of those children.  Mr. Ne'eman clearly does not respect the role of parents in representing the interests of their autistic children, particularly those severely autistic children who can not speak for themselves and with whom Mr. Ne'eman has so very little in common. Many parents seek treatment and cure for their autistic children's autism disorder disabilities.

US President Barack Obama is seen by many, including this Canadian, as an outstanding leader on many fronts.  With respect to autism disorders though Mr. Obama has signaled, at best, a lack of understanding of  the real challenges facing the severely autistic ... and the family members who care for them ... by nominating a  University student who does not understand the seriousness of the challenges faced by those with actual Autistic Disorder and their families and caregivers.  President Obama has nominated as a disability representative a person who, at best, views autism as a "social",or societally caused,  not a real disability, who opposes the rights of autistic children to be cured of their autism, and who marginalizes  the role, the right and the duty of parents and caregivers in advancing their autistic children's best interests.

At least  Mr. Ne'eman will be  happy. His presidential endorsement will garner him more interviews with NPR, the New Yorker, CBC, Newsweek, TIME etc., etc., etc., etc., etc., etc.  Meanwhile parents and caregivers will continue to struggle, day in and day out, to actually care for and help their autistic children, the  autistic children on whose behalf Mr. Ne'eman claims to speak.

autism

ASAN Board of Directors Excludes Autistic Persons with Intellectual Disabilities

Approximately 75-80% of persons with Autistic Disorder also have Intellectual Disabilities or cognitive impairment. Yet ASAN, the "Autistic" Self Advocacy Network Board of Directors has no members who represent that large segment of the Autistic Disorder community. The ASAN site profiles its directors all of whom are, by the descriptions on that site, very intelligent and do not have an intellectual disability. It is not clear if persons with Autistic Disorder are represented at all since the Directors are all described as being "on the spectrum":

"Ari Ne'eman ... is currently studying political science in the Sondheim Public Affairs Scholars Program at the University of Maryland-Baltimore County and expects to graduate in May 2010.

Scott Michael Robertson ... has a bachelor's degree in computer science from Rensselaer Polytechnic Institute and a master's degree in human-computer interaction from Carnegie Mellon University. He is currently a Ph.D. Candidate in information sciences and technology at Penn State University's University Park campus.

Dora Raymaker, MS, Systems Science ... currently works on a number of research projects on topics related to healthcare and well-being (through OHSU, http://ohsu.edu), alternative and augmentative communication

Paula Durbin-Westby, B.A.(BA degree info obtained here) .... has testified at numerous IACC meetings

Meg Evans is currently employed in the legal publishing industry. She is a licensed attorney in the State of Ohio and received her law degree from Case Western Reserve University in Cleveland, Ohio. 

Elesia Ashkenazy  ...   possesses a B.A. degree in Speech & Hearing Sciences from Portland State University. She is a licensed Speech-Language Pathology Assistant (SLPA) (BA degee and SLPA license info obtained here)

Melanie Yergeau is a Ph.D. candidate in Rhetoric, Composition, and Literacy at The Ohio State University, where she also teaches courses in writing, digital media, and disability studies."

The ASAN purports to be an Autistic Self Advocacy organization yet it excludes from membership on its Board of Directors persons with Autistic Disorder and Intellectual Disability even though 75-80% of persons with Autistic Disorder are also cognitively impaired.  This is the same organization that rages and rants against Autism Speaks because it claims that its Board is not representative of the autism spectrum.   

None of the specific "autism spectrum" diagnoses of the Directors are disclosed so it is impossible to determine whether some of the Directors are persons with Autistic Disorder diagnoses.  In the case of Melanie Yergeau the ASAN site does not indicate whether she has an "autism spectrum" diagnosis at all.  In the case of Paula Durbin Westby the site indicates that she learned about being on the autism spectrum but there is no indication that she has an actual autism disorder diagnosis.  Meg Evans "was identified as autistic in early childhood". The site bio information does not indicate that she was actually diagnosed as having an autism   disorder. 

The lack of representation of persons with Autistic Disorder and Intellectual Disability on the ASAN Board is important in light of their claim to be an autistic self advocacy network working on behalf of all persons "on the spectrum".  ASAN has organized protests of awareness campaigns that portray the harsher realities of autism disorders and describes autism not as a disability in the medical sense but only in the social sense that a person with an autism disorder is someone who is simply different. It is only society's intolerance that creates the disability.

As the parent of a child with Autistic Disorder with cognitive impairment I can not see this falsehood being perpetrated without speaking out against it.  When I am dead or infirm my son will require the assistance of society in order to live and prosper. He can not survive on his own.  His reality is shared to a greater or lesser extent by the 75-80% of persons with Autistic Disorder who are also intellectually disabled. The brilliant directors of ASAN who are "on the spectrum" do not know him and do not share his challenges. They have absolutely no right to claim to represent persons with Autistic Disorder and intellectual disability to the extent that they do so in the guise of being "self advocates".

ASAN directors oppose curing autism. They declare that "WE" do not want to be cured.  Well and good.  If my son had their intellectual AND social skills I would not want a cure for him either. But he does not  have their abilities and many persons actually diagnosed with Autistic Disorder do not.

ASAN is wrong to oppose research aimed at curing autism. ASAN is an elitist group of high functioning individuals, some of whom may not even have an autism diagnosis, some of whom are known to have Aspergers diagnoses.  They all demonstrate social, behavioral, intellectual and communication abilities not typical of most persons with Autistic Disorder.

ASAN misrepresents itself when it claims to being a "self advocacy"  network for persons on the "autism spectrum".  It is a claim that should be dropped.

autism

Kevin Leitch Goes Overboard, Opposes Interests of Children with Autism

Yup Kevin Leitch opposes the interests and well being of autistic children.

That is the logical conclusion of the false dichotomy Kevin Leitch creates when he accuses Bob Wright of opposing the interests ofautistic adults. Mr. Leitch has his knickers in a knot because Mr. Wright commented on the activities of a few autistic adults in disrupting a benefit and therefore in Kevin's mind he is opposed to the interests of all autistic adults. Using Kevin Logic, in attacking Bob Wright for defending a benefit for autistic children, Kevin Leitch opposes the interests and well being of autistic children.

Autism is a spectrum and some like the ASAN supporters who stepped away from their keyboards to try and disrupt a benefit to help autistic children, have abilities lacking in many severely autistic children and adults. Bob Wright said, much more politely than I would have done, that he wished his more severely impaired grandson had their abilities. That is all he said.

The protesters subscribe to an ideology promoted by a few high functioning adults with autism and Aspergers who oppose the idea of curing autism. They are not content to oppose cures for themselves. They oppose cures for other people's children and for other adults more severely impaired then them. Mr. Leitch also subscribes to this ideology and is opposed to Autism Speaks and Bob Wright. Kevin Leitch is so tied to this anti-cure ideology that he is willing to shred whatever remains of his credibility and accuse Bob Wright of being opposed to autistic adults.

Kevin Leitch's comments about Bob Wright are nonsense, pure and utter nonsense, and should not be taken seriously. Give your head a shake Kev. You are losing it.

autism

Autism Speaks' Bob Wright Speaks Autism Truths

"The protesters are lucky. They're well off enough, healthy enough, to do it. I wish my grandson were able to join them."

Bob Wright, New York Post, November 19, 2009

Bob Wright of Autism Speaks has called out the handful of protesters, barely autistic members or followers of the Autism Spectrum Self Advocacy Network, who made yet another attention grab by protesting a celebrity benefit held to raise funds and awareness for autism disorders. Autism Speaks has critics from various points in the world of autism but its events are attended by thousands of participants while ASAN is lucky to haul an even dozen away from the comfort of their keyboards.

These very high functioning, self identified, autism "spectrum" dwellers don't appreciate how lucky they are and go all out to disrupt efforts to help all persons on the autism spectrum including the low functioning, severely autistic children and adults who actually need the help. Self advocacy? Far from it.

ASAN is an oppressive group. Its barely autistic leaders identify with the "autism spectrum" concept and want to promote a view of autism which supports their own self image. To that end they suppress any portrayal of the negative realities that afflict those with severe, low functioning autism disorders.

ASAN protesters advocate against the rights and interests of the severely autistic, those who would have been diagnosed as autistic BEFORE the expansion of the diagnostic definitions of autism disorders in 1993-4. They seek to prevent research that could lead to treatment or cure of autism disorders. They, the very high functioning barely autistic, do not need treatment to attend university, establish corporate organizations, meet with high level politicians, write lengthy essays and of course, pose for photo ops and interviews with high profile, but autism ignorant, mainstream media publications like the New Yorker, the NY Times, Newsweek and the CBC.

ASAN does not want research to be conducted that could help cure those autistic persons, including children, who suffer from severe self injury, lack understanding of language, wander off into dangerous traffic, drown in neighborhood pools or live their lives in institutional care after their parents can no longer care for them.

Like Bob Wright I wish my son was able to join them in their protests. I wish my son was able to understand why they feel that their self identification with the word "autism" is so important that they are entitled, under the pretense of "autism spectrum" self advocacy, to suppress his rights and interests.

autism

Autism Community?‎ ASAN Is Anti Autism Cure and Nothing More

ASAN does NOT represent the autism "community".

At best it represents some persons with High Functioning Autism and Aspergers who view autism disorders not as medical disorders but as a social club for persons at the high functioning end of the spectrum and those people without autism spectrum disorders who, for whatever reason, like to self identify as autistic. It is not even clear if ASAN is referring to autism spectrum diagnoses when it refers to "autism" since it expressly rejects the "medical" model of autism in its by-laws:

" 1 MISSION STATEMENT

The Autistic Self Advocacy Network (ASAN) seeks to improve the representation of the autistic community in public policy discussions and to advance the autistic culture movement. Based on neurodiversity and the social model of disability, ASAN seeks to promote social acceptance of neurological differences and to improve disability services and accommodations."

What the above statement indicates is that ASAN, presumably led by some persons with actual DSM diagnoses of Aspergers Disorder, and some higher functioning persons with PDD-NOS and Autistic Disorder, have started an organization which rejects the medical basis on which they have organized - their medical Autism Spectrum Diagnoses. Beyond that ASAN promotes the view that persons with autism are different but do not actually have a disorder. Accordingly no cure should be sought for persons with autism.

When Ari Ne'eman and company say WE don't want to be cured of our autism they are not talking about themselves as individuals or even about members of their organization. They object to parents seeking to treat and cure their own children and professionals who seek to help their efforts. While I acknowledge that it is Mr. Ne'eman's right to speak on behalf of himself in opposing treatment and cure for his àutism spectrum social condition, he and ASAN go further and oppose the right of parents to seek treatment for their own autistic children including those who are, unlike Mr. Ne'eman and the ASAN Board of Directors, severely autistic. They say so very expressly in the comment Autism Speaks in Columbus: Let Them Eat Cure by Meg Evans.

In the article above mentioned the author refers to several people who joined her at the ASAN protest of the Central Ohio/Ohio State University Autism Speaks walk which saw approximately 6,000 autistic persons, family members and friends turn walk to raise funds for autism research. The reality is that ASAN is a high profile extremist group which, thanks to the media talents of its very high functioning leadership, makes a big splash with autism ignorant organizations like the New Yorker and Canada`s CBC. It is too bad that these autism dilettante media organizations do not have their reporters get out of their comfortable chairs and go to events such as walks for autism research to see who actually speaks for autism ... it is the parents, family and friends of autistic children and severely autistic adults who are actually fighting to improve the lives of the truly autistic.

autism

Autism Speaks in Ohio, ASAN Stays Home?

It looks like the Autism Speaks Walk for Autism was a huge success in Ohio yesterday.

Cleveland.com reports in Thousands walk to support autism research that as many as many as 6,000 people, according to organizers, turned out in support. The moneys raised will fund the work local autism researchers, s family outings and services, and to raise awareness. Although the largely Aspergers dominated ASAN branch in Ohio threatened to stage a protest there is no mention of it in the article. There is a quote from a person with Aspergers who was actually at the event and expressed her appreciation for those who came out in support:

Angel Russo of Sagamore Hills headed up the "Angel's Army" team, which included 30 relatives and friends from Cleveland, Pittsburgh and Philadelphia.

"It means a lot to me that they're here," said Russo, 22, who has Asperger's syndrome.

In addition to persons with severe Autistic Disorder, it appears that claims by Ari and ASAN to represent even the High Functioning Autism and Aspergers "community" should be taken with a very large grain of salt.

autism

ASAN Autism Spectrum Takeover Continues with Suppression of Autism Truth

The ASAN, Autistic Spectrum Advocacy Network, is continuing its takeover of the autism spectrum of disorders and its unrelenting attempt to transform autism from a medical disorder to a social club for persons with High Functioning Autism, Aspergers, self diagnosed "auties" and persons with autism like symptoms.

At the same time that the university students, lawyers, researchers and other very capable members of ASAN are expanding the definition of autism at the high functioning end of the spectrum they are seeking to exclude those persons with severe autism, the low functioning severely autistic persons with Autistic Disorder.

Any mention of the severely autistic or the challenges that confront them and the families who actually care for them is strictly verboten in the new world order of the self professed "auties" and "aspies" who take offense at being associated with persons who can not communicate by any means and who live their lives in institutional care. Better that the severely autistic become, or remain, invisible autistics then the self esteem of the ASAN leaders be hurt by inclusion in the public mind with lower functioning persons with Autistic Disorder.

Autism Speaks made the mistake of kowtowing to the ASAN outrage over the I Am Autism video which, like Autism Every Day before it, spoke of the harsher realities of actual autism. Now ASAN, drunk with victory for having forced a guilty plea from Autism Speaks, is planning to harass parents and other members of Autism Speaks in a walk for autism.

ASAN declares "nothing about us without us" and then acts to do that very thing to the very vulnerable severely autistic persons and autistic children who they do not represent. ASAN now harasses very many persons with autism disorders who they do not represent. ASAN does not want the world to know the truth, that autistic disorder is a severely disabling medical disorder requiring substantial commitment and sacrifice from families and society. Autism truth is not fashionable at ASAN.

Hopefully Autism Speaks has learned its lesson and will make a greater effort to present the realities of autism to the world notwithstanding howling from the barely autistic members of ASAN.

autism

ASAN's Autism Spectrum Takeover: Disempowering the Severely Autistic

ASAN is an acronym for an organization called the Autistic Self Advocacy Network. It's board of directors consists of persons self described as persons "on the autism spectrum". The founding president is Ari Ne'eman a university student who has declared to the world that "WE" don't want to be cured". Who is included in Mr. Ne'eman's Royal We is not entirely clear although it certainly does not include my son on whose behalf Mr. Ne'eman definitely does not speak. Essentially ASAN is comprised of a group of persons with Aspergers and HFA diagnoses, and others who identify with the Autism Spectrum and who purport to speak on behalf of all persons "on the spectrum". Although it purports to speak on behalf of all persons on the spectrum ASAN actually objects to truthful depictions of those suffering from the realities of classic, severe, autistic disorder diagnoses.

Other than its university student president the ASAN Board of Directors comprises other persons "on the spectrum" who are lawyers, computer science and information technology graduates. One who claims to have an autism diagnosis is a lawyer, married with two children and gainfully employed in the publishing industry. These people have nothing in common with the autistic persons who can not communicate or have very little communication ability, with or without technology. They have nothing in common with those autistic persons who live in institutional care.

The ASAN Directorate, understandably given its members impeccable academic and professional credentials, objects to any negative depictions of autism disorders. The ASAN directors and members want to redefine autism. They do not want to be identified with the many persons with Autistic Disorder who are intellectually impaired or otherwise severely challenged. They find offensive any mention of the challenges faced by families or society in caring for the severely autistic. ASAN has organized public protests and petitions to oppose any negative depiction of autism spectrum disorders. It's most recent victims were the parents who produced the "I Am Autism" video through Autism Speaks. Autism Speaks "kowtowed" (as described by Jonathan Mitchell of Autism's Gadfly) before ASAN's pressure. Autism Speaks effectively abandoned those parents and the severely autistic in favor of the academic and professional persons on ASAN's autism spectrum.

ASAN expressly subscribes to a social model of autism. That is to say that it does not see autism disorders (it does not use the term disorders to describe the conditions of those on the "Spectrum") as medical disorders at all even though some of them have medical diagnoses of unspecified Pervasive Developmental Disorders. ASAN objects to the notion of curing autism.

You will find no mention of the severely autistic on the ASAN web site. You will find no mention of Autistic Disorder. You will find no mention of the fact that many persons with Autistic Disorder also have serious intellectual deficits. Autism disorders are never mentioned in negative terms. You will see rationalizations and even glorification of some of the deficits associated with life "on the spectrum".

On the ASAN web site you will see an article, About Autism, borrowed from Change.org's autism (neurodiversity) page which does not refer to intellectual or other deficits. Instead it describes different sensory experiences, non-standard ways of learning and approaching problem solving, deeply focused thinking and passionate interests in specific subjects, atypical, sometimes repetitive, movement, difficulties in understanding and expressing language as used in typical communication and difficulties in understanding and expressing typical social interaction.

Those with severe autistic disorder, those autistics with intellectual deficits, those who live in institutions do not exist on the ASAN "spectrum". The severely autistic are being disempowered ... by an organization which defines autism in terms of the self images of the high functioning professionals and university students who comprise the ASAN leadership.

To the extent that ASAN suppresses free expression of the realities of the severely autistic it is acting contrary to the interests of the severely autistic. ASAN's leaders are disempowering and oppressing the very people who, unlike ASAN's leaders, would have been diagnosed as autistic under the DSM III.

ASAN is effectively engaged in the takeover of the Autism Spectrum.

autism