Autism Reality Check: Where Are The IACC Results?

I have previously written about the importance of the IACC and in a 2009 blog comment expressly thanked the IACC for its role in advancing autism research.  With the passage of 3 years though I have  become a less enthusiastic IACC booster.  Both the Canary Party and the Elizabeth Birt Center for Autism Law and Advocacy (EBCALA) have called for an accounting from the IACC and its leadership. I support their calls for accountability.  

Autism advocate representatives on the committee have been anti-cure ideologues while autistic persons seeking cure like Jonathan Mitchell are ignored in every sense of the word.  The IACC, despite paying lip service to gene environment interaction has for the most part continued to subscribe to the "it's gotta be genetic" belief system for explaining what causes autism. 

During the IACC existence, and during the 14 years since my son's autistic disorder diagnosis,  autism diagnosis rates have literally exploded. Yet the IACC makes no serious effort to address this burgeoning rate and allows the public to believe the tired, repetitive, and unsubstantiated excuses that every single reported increase in autism is due entirely to mid 90's diagnostic definition changes, enhanced awareness and diagnostic substitution motivated by parental desire to obtain all those wonderful autism services that apparently exist in every school district in the US.

I am not anti-IACC but I do believe there should be some accounting provided.  As the Autism Gadfly Jonathan Mitchell has said non-Americans, including Canadians like me, have no right to DEMAND anything from an American taxpayer funded institution but the IACC has an important role to play in autism research and, like many US institutions, has a world wide impact.  As a Canadian autism dad I ask the IACC to provide a real world accounting of its efforts.  Are we any closer to understanding autism causes? Will the IACC continue to politely ignore the environment side of the gene environment base of autism disorders?  Will we actively direct our research towards cures and treatments?

If I have been too one sided I invite anyone reading this blog, including the academics and researchers who occasionally humor this autism dad with a visit to my blog, to please provide examples of real world results achieved by the IACC or indicate where the IACC is going and whether it still hopes to find causes, cures and treatments for the increasingly diagnosed autism disorders.

Cure Autism? Absolutely!

Autism is a disorder. We need to find a cure, or cures, for autism disorders.

These simple points seem to escape those who perversely find joy in the fact that a child has an autism disorder. Equally irrational is the notion that society need not find a cure, or cures, for the various autism spectrum disorders. Autism, at least in its most severe manifestations, directly harms a person with autism when he or she engages in Self Injurious Behavior.  Autism has also taken the lives of those who wander away from home or place of care as appears so often in the news. Some of us have been very fortunate when our autistic children are returned to us safely. It is impossible for me as the father of a severely autistic 15 year old son to respect the opinions of those who argue against curing autism disorders.  That perspective, as I see it, is irrational at best and perverse at worst.

At Autism, Epilepsy and Self-Injurious Behavior Kim Oakley is a blogger who has previously posted a number of honest, informative Youtube videos showing her son's Self Injurious Behavior.  In the latest comment on her blog   Autistic behaviors, Antipsychotics and Angioedema: Warning she again addresses issues arising from SIB with an emphasis in this article on some medication side effects. Her son's SIB is described:

"Late June, 2011. My severely-autistic, non-verbal son had been smashing self in face and head for 3 days, despite numerous interventions to stop brutal self-injury. Protective gear was in place (karate helmet, Posey Mitts). Temporary restraints were ineffective (during this particular episode, he was so strong, broke out of restraints)."


In  Access to health Casdok of Mother of Shrek  has also written recently on her son's SIB:

"Drowning in a tidal wave. Rapidly repeatedly smashing his head hard onto a solid object trying to cause more pain to block out the pain he is already in - giving himself something to cling onto – to find his way back. This is what it looks like to me. A tidal wave of pain from what though – I don’t know. C needs investigations to rule out health issues. 


His desperate eyes boring into your heart silently screaming for you to help him. But you can’t always.


I wrote about this back in Feb. The words ‘critical ‘crisis’ ‘life threatening’ have all been used and yet C has only yesterday got to see the right Consultant who would prescribe meds and a referral to see a Neurologist. Meds might take yet another week – ‘as we are busy’."

Casdok, as I understand her writings, does not believe that autism should be cured. She is obviously a caring and dedicated mother but I can not pretend to understand how she can fight so hard to help her son deal with serious self injurious behavior on one hand, including seeking  medical treatment, and still oppose curing autism. 

Self injurious behavior and other serious challenges presented by autism are exactly what motivate the many parents of autistic children who do seek cures for their children. I wish Cadok and her son well.  I hope they do get the medical assessment  her son needs.  

For the sake of my own son, and others who are severely affected by autism disorders, I hope that the new trend in research toward understanding all of the possible causes of autism, and the decline of the autism is primarily genetic myth,  will also lead to more effective treatments and some day a cure for autism.

Autism is a Mental Disorder for Which Cures Should be Sought

About DSM-5 

Diagnostic and Statistical Manual of Mental Disorders (DSM) is the standard classification of mental disorders used by mental health professionals in the United States and contains a listing of diagnostic criteria for every psychiatric disorder recognized by the U.S. healthcare system.

 American Psychiatric Association, DSM-5 Development, About DSM-5

Autism is, by definition, a mental disorder. Autism is, by definition a psychiatric disorder. 

These autism realities are often ignored in the attempt by some persons to claim that they speak on behalf of persons with autism.  These same persons, purporting to speak on behalf of all persons with autism disorders, claim that "THEY" do not want to be cured.

 

The politicking involved in maintaining the impossible position of speaking for all persons with a mental disorder is challenging even with the backing of the New York(er) magazine and the IACC. Flip flopping is  frequent with discussion focusing on autism as a socially imposed disability rather than a mental or psychiatric disorder. The same "autism spokespersons" who purport to speak on behalf of people with mental disorder diagnoses avoid like the plague any mention of autism as ...... a mental disorder.  Although they embrace the autism label, a diagnostic category in the DSM they make no mention of what it actually is ... a mental disorder.  

A social disability, a way of life, a culture, a different way of thinking, a different part of a neurodiverse existence. All of these things for sure but not a mental disorder.  And they want me to reject what I know about my son's Autistic Disorder, his mental disorder, based on 14 years of living with him, caring for him, loving him .....  in favor of the views of some adult diagnosed persons views who do not know my son and  who do not acknowledge the reality of their own diagnoses?

Today is a day on which some in the online autism world are shutting down social communication in an attempt to draw attention to communication deficits suffered by persons with autism. It is an interesting idea and I hope it creates some buzz even though I am not participating. 

I have long ago chosen to speak out about autism disorders and on this day I choose to go back to basics and point out a basic that is becoming more and more obscured ... autism is a mental disorder.  It is a mental disorder which imposes severe life restrictions on many who suffer from it and can not drive Land Rovers, operate successful businesses, play in rock bands, attend colleges for gifted youth or work as researchers with prominent high functioning autism experts. 

Autism is a mental disorder for which we must not stop trying to find treatments and cures to improve the lives of those who suffer from the disorder. 

Facing Autism Reality Is Not A Choice; It Is A Challenge That Must Be Faced

Facing autism reality is a huge challenge.  It is difficult on a good day. But it is not a choice. It is what must be done or autistic children and adults will suffer.  

In the case of parents our children will suffer if we do not face autism reality head on, acknowledge what we do know about autism as it manifests itself in our children and deal with it, each and every minute of each and every day. We know that in most cases autism, despite the Hollywood movies, and the success of high functioning exceptions, means a lifetime of dependency, residential and even institutional care.

As a parent  of a 14 year old son with Autistic Disorder and Intellectual Disability,  I do not have a  choice to NOT face autism reality every single moment of every single day.  I have written on this site, and provided pictures. of self inflicted bite marks on my son's hands and windows in our house broken by those same hands.  I have written about the time several years ago where we could have easily lost our son, who we love dearly, because I was distracted by a telephone call and was unaware that Conor had slipped out of the house across a parking lot and main street busy with automobile traffic that he did not know how to negotiate.  I have written about the incredibly intense fear and guilt that I felt arising from that event. and from my failure, on that day, to do the very best that I could for my son.   I have posted many pictures and told many stories on this site about the great joy that Conor brings to our lives each and every day. Some of those pictures are posted on the side bar of this blog.

So what do we know about autism or more accurately about autism disorders? We know that in most cases of Autistic Disorder autism is a disorder which severely limits and restricts the abilities and opportunities to enjoy life of those who suffer from it.  We know that for those with Autistic Disorder serious communication and behavioral challenges must be faced. We know, to quote CDC autism expert Dr. Marshalyn Yeargin-Allsopp, that the "vast majority" of those with the original Autistic Disorder also suffer from intellectual disability.  We know that that two recent surveys by the CDC reported that in fact 41-44% of ALL persons on the autism spectrum suffer from intellectual disability a figure which is watered down below the majority line by the fact that the Autism Spectrum includes persons with Aspergers who, by diagnostic definition ,are not intellectually disabled or cognitively impaired. 

In terms of treatments we know that the intervention that enjoys the most evidence in support of its effectiveness is and has for many years been Applied Behavior Analysis or ABA. We know that there may be other treatments and interventions that are helpful in treating autism that have not been researched well enough to provide the evidence base required for widespread acceptance by the public health authorities.  We know that parents facing the challenges of helping their autistic children have tried various methods including biomedical interventions and report significant improvement in their children.  We know that as parents their observations opinions are given little or no weight by "scientists" for whom direct observation has been replaced in the scientific method by  sometimes flawed epidemiological studies and by personal attacks on parents whose observations are inconsistent with scientific consensus.

In terms of autism research we know that our knowledge of what causes autism disorders has been held back by an almost cult like, unscientific and obsessive belief that autism is 100% genetic. We know that funding for research has for decades been dedicated overwhelmingly towards genetic focused autism research with little to show for it. We know that funding for autism research has been directed away from possible environmental causes of autism, and of course away from assignment of responsibility for any possible toxins whether injected, swallowed or breathed into our lungs which might have contributed to or caused neurological damage in our children. Better to blame the parents' genes or age then to admit that maybe corporate self interest or governmental negligence might bear some responsibility.

Those of us who are parents know that life will not be rosy for many of our children severely affected by autism disorder no matter how many Hollywood movies are made portraying autism as a gift and no matter how many well connected, barely autistic, inexperienced in life university students  are appointed to US government committees. Subscribing to nonsensical, autism is beautiful ideology will not help our autistic children.

As parents we know that we must face autism reality by doing our best to help our children overcome their autism challenges and the self interest driven misrepresentation of autism that dominates public consciousness of autism.  As parents we know that we do face autism reality every day and that we do our best to help our children even if , as I did that day my son left our house and faced the dangers of automobile traffic, we sometimes fail.

In facing autism reality we must also keep in mind that there are those who help us along the way. My son has benefited from educators who have accommodated him in our neighborhood schools and who have worked hard to understand his challenges and worked with him. The teacher assistants who have worked with my son have been a blessing.   My son, and many other autistic children in New Brunswick, have benefited from people like Dr. Paul McDonnell a clinical psychologist who directly educated and guided many of us as parents and worked directly with autistic children.  Many autistic children have benefited here in New Brunswick from the caring and dedicated professionals at the Stan Cassidy Rehabilitation Center autism team and from the UNB-CEL Autism Intervention Team and Ann Higgins.  Even politicians have, here in New Brunswick, Canada,  been very helpful with both major political parties instituting positive changes while in office.

I know personally that even strangers  will sometimes help.  On the day Conor wandered out of the house and into potentially deadly automobile traffic a gentleman stopped his vehicle and helped him into a nearby convenience store where, after calling 911,  I found him safe and sound.  The man who brought Conor into the store waited until I arrived and then turned and walked away without identifying himself.   

Facing autism reality is a challenge but it can be done if we are honest about it and do not subscribe to  Neurodiversity ideological nonsense  that make us feel better but does little to actually help those with autism disorders.  It can also be done by researchers and public health authorities if they choose to abandon the "it's gotta be genetic model" for funding autism research and dedicate more research dollars towards finding causes, treatments and cures for autism disorders.

Autism Disorders and Family: Conor Has Always Loved Life and Basked in the Love of Family

Conor has always loved and enjoyed life to the full. He has also basked in the love and affection of family. In the pictures of Conor's early years that follow he is seen with his Mom, Dad, Brother Brandon and Grammy Doherty.  We have accepted, embraced and loved Conor, autism and all, but we have not embraced his Autistic Disorder because to do so would be to abandon the boy that we love so much.  We fought for ABA and accommodated education services for him to help improve his situation in life which, as for most, will grow more difficult with time, particularly when time, age and the inevitable fate of all humans takes his family from him.   We fight for real autism research aimed at finding treatments and cures that will benefit Conor and other persons with autism disorders who need and want treatment.  

I challenge anyone, Neurodiversity ideologue or otherwise,  to say that the boy in these pictures is not accepted and loved by his family.  Don't do it anonymously or under an internet stage name though.  Put your full real  name on your comment and tell me this boy is not living life and being loved to the full.

Conor has Autistic Disorder and Intellectual Disabilities. He has a very restricted life ahead of him once Mom and Dad are gone. Those are realities we as caring, clear headed parents can not ignore. Because of that we fight hard for accommodation, research, treatment and ... cure for Autistic Disorder to benefit  the wonderful gift that we have enjoyed for so many years ... to benefit Conor.

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!

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

Autism Speaks Welcomes To Its Board Autism Cure Opponent John Elder Robison

Autism Speaks has responded to my comment concerning publication of my comment on the official Autism Speaks blog site about the views of new Autism Speaks board member John Elder Robison.  AS did, subsequent to my initiial comment on this site,  post my questions to new Autism Speaks board member John Elder Robison. Mr. Robison also answered very honestly my questions on the Autism Speaks blog although I am very concerned about what his answers portend for the future direction of Autism Speaks.

Mr. Robison is a very high functioning person with Aspergers Disorder of whom   Autism Speaks per Dr. Geraldine Dawson has announced:

"It is essential that  our grant funding reflects the needs and perspectives of the community we serve, namely, people with autism spectrum disorders. We are very pleased to welcome John to our scientific review boards. His insight and skills will prove invaluable."

Mr. Robison is, like Ari Ne'eman,  a very high functioning person with an Asperger's Disorder diagnosis.  Autism Speaks, as stated in its announcement,  feels that Mr. Robison's  Aspergers condition permits him to offer insights on behalf of all persons with autism spectrum disorders.  The autism spectrum, at least until the DSM 5 comes into effect, includes low functioning persons with Autistic Disorders. At least 75-80% of persons with Autistic Disorder have been estimated by credible studies and agencies such as the Canadian Psychological Association and the CDC to have an Intellectual Disability.  How the unquestionably talented and very intelligent Mr. Robison will offer insights into the life challenges, needs and perspectives of those with Autistic Disorder is not explained  by Autism Speaks and is not a proposition that I accept as the father of a son with severe Autistic Disorder.  Of course, from Mr Robison's perspective he is better suited to represent my son's interests than I am as his father.

On the Autism Speaks official blog site, where Mr. Robison was featured as a guest commentator, he stated:

"I guess I’d counter with a question of my own. What makes you think a person who cares for a disabled autistic person is better qualified to speak on their behalf than me, a high functioning autistic individual?


Caretakers all too often have their own agendas at odds with the people they supposedly care for. They want to read a paper; their charge wants to keep practicing. There is always the temptation to do what’s easiest for the caretaker rather than what’s best for the care-taken person.


There are so many cases of caretakers abusing or neglecting their charges and forcing unwanted therapies on disabled people that I would not be so quick to assume caregivers should have the exclusive right to speak on behalf of the disabled.

That said, I know there are many loving caretakers out there who are truly in tune with what their disabled charges want and need. I would give considerable weight to their opinions if I were in a situation where that was appropriate.

But that is not what I joined the board to do. I am not there to judge anyone else, or speak on anyone’s behalf. I am there to render my own perspective on proposed scientific research and treatments studies, as an autistic person at my particular level of functionality.

A better question to ask might be: Should Autism Speaks seek individuals with a greater degree of autistic disability to serve beside me on these boards. In my opinion, the answer to that is yes and I hope to see that achieved in the future.

The same reader asked a second question: Do you support research aimed at finding cures for autism?

All of the science to date says autism is founded in structural differences in the brain. Differences are stable things. They are not diseases in need of a cure. Taking away the difference is – to me – tantamount to changing to another person. In any case, the idea of such brain configuration is in the realm of science fiction today.

Having said that, I am well aware that autism presents some of us on the spectrum with virtually insurmountable challenges from crushing levels of disability. Others – like me – grow up with milder but still significant components of disability. As much as I recognize my own unique gifts I never lose sight of the “hard parts;” the reason autism is a disability condition.

That is precisely the reason I joined the Autism Speaks boards. I want to bring my autistic perspective to the boards that choose how to allocate our limited research dollars to the best benefit of people living with autism today.

For that reason I fully support research to develop ways to remediate the things that disable us. For example, I have written extensively about research I’m involved with that’s aimed at minimizing social disability by helping us read nonverbal signals that we were previously blind to. I am working with the scientists at Beth Israel Deaconess to develop a study to improve language comprehension and expression in people with autistic speech impairments. I support research to help alleviate the gastric distress that plagues many of us.

However, none of those things are “cures for autism.” They are studies aimed at attacking specific challenges autism presents us. While I have high hopes that we can remediate certain autistic disabilities, I believe our underlying autism will remain. I am not aware of any proposed research that can change that reality.

That’s where acceptance comes in. I want therapies that can help free people from disability. At the same time, I believe we have the right to be recognized in other ways as different but equal in larger human society. Through the efforts of Autism Speaks and all of us within and without the advocacy organizations I hope to see that goal furthered as well."

Without responding, at this time,  to all of the points raised by John Elder Robison in his reply to my questions I do thank him for stating clearly and honestly  that he is opposed to research aimed at curing autism. And  he does pay lip service to representing the perspective of  an "autistic" (Aspergers) person with  his particular level (very high) of functionality) he does not restrict the content of his views to that perspective.  He does not, for example, oppose allocation of research funds for curing Aspergers Disorder alone; he opposes allocation of research funds aimed at curing autism a concept which he derisively dismisses as science fiction.

To the parents of severely autistic children who are seeking autism cure oriented research from Autism Speaks Mr. Robison has an answer.  Hey, some parents and caregivers do not act in the best interests of their charges, their children in the case of parents. Therefor better to let John Elder Robison who doesn't actually know your children or charges, who doesn't share their condition speak on their behalf.

The primary concern I have with Mr Robison's views is his opposition to research aimed at curing autism.  If those are his views then it is a clear indication that Autism Speaks will not be using the research dollars that it solicits, including the money solicited from parents of severely autistic children, to back cure oriented autism research.

For now at least the Autism Speaks official web site under Autism Speaks History still describes itself as  an organization dedicated to finding cures for autism disorders:

"Autism Speaks was founded in February 2005 by Bob and Suzanne Wright, grandparents of a child with autism. Since then, Autism Speaks has grown into the nation's largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatment and  a cure for autism."

In the section titled Our Mission  Autism Speaks states"

"We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism"

It is difficult for me to understand how the mission of Autism Speaks to fund research into curing autism disorders can be reconciled with the views  of its new board member and scientific and research advisor that autism can not, and should not, be cured, that the idea of curing autism is ... science fiction.



Hopefully,  in future news releases,  Autism Speaks will confirm whether it will, or will not, continue to raise funds for research aimed at curing autism.  Hopefully they will do so before they ask members of the public, including the parents of autistic children that AS Board member Robison holds in such low esteem, for contributions.


autism

In Future Will Autism Spectrum Disorders Be Referred To As Brain Connectivity Disorders?

Another study has been published, the results of which, according to Science Centric,adds to evidence that autism is a brain 'connectivity' disorder. I had previously commented on brain connectivity in April 2009 noting that a study at that time was supportive of a previous,  2006,  study linking autism disorders to brain connectivity issues: Autism's Four C's: Cerebellum, Connectivity, Coordination, Communication.  If further study results indicate that autism deficits arise from brain connectivity disorders will the autism spectrum disorders come to be known as the Brain Connectivity Disorders?  More importantly, if brain connectivity is the biological problem that gives rise to autism disorders will  effective treatments and cures be developed targeting the connectivity issues?

As reported on Science Direct the study's lead researcher Mustafa Sahin, MD, PhD, of Children's Department of Neurology, made statements that hold out some hope that treatments might ultimately result from further brain connectivity research :

"'People have started to look at autism as a developmental disconnection syndrome - there are either too many connections or too few connections between different parts of the brain,' says Sahin. 'In the mouse models, we're seeing an exuberance of connections, consistent with the idea that autism may involve a sensory overload, and/or a lack of filtering of information.'

Sahin hopes that the brain's miswiring can be corrected by drugs targeting the molecular pathways that cause it. The mTOR pathway is emerging as central to various kinds of axon abnormalities, and drugs inhibiting mTOR has already been approved by the FDA. For example, one mTOR inhibitor, rapamycin, is currently used mainly to prevent organ rejection in transplant patients, and Sahin plans to launch a clinical trial of a rapamycin-like drug in approximately 50 patients with TSC later this year, to see if the drug improves neurocognition, autism and seizures."

This is one father of a severely autistic son who is hoping that such research does lead to viable autism treatments and cures.  I want my son to have the opportunity to participate as fully in life as I have done.   Correcting connectivity issues that would enhance his understanding of the world?  Absolutely.

autism

US President Barack Obama Opposes Curing Autism

In a huge set back for autistic children and their parents US President Barack Obama has nominated Ari Ne'eman, a university student with Aspergers Disorder,  for appointment to the US National Council on disabilities. Mr. Ne'eman is a staunch opponent of curing, or seeking cures for, autism. 

The appointment, in addition to signaling President Obama's opposition to curing autism is bizarre in that Mr. Ne'eman does not even regard autism as a disability.  As Jonathan Mitchell points out at Autism's Gadfly,  Mr. Ne'eman does not even view autism disorders as disabilities having written:

We see the world in a different way than our neurotypical peers (neurotypical is a word in the autistic community meaning those of the majority neurology). This does not imply a defect, but merely a difference — one that we have just the same right to as those of a different race, nationality or religion.The belief was that anyone society labeled "disabled" could only go so far. Sadly, these misconceptions had the potential to become self-fulfilling prophecies. When the expectation is that people of a certain type can only reach so far, they are not provided with the same challenges and opportunities that educators give mainstreamed students....

.....

We should recognize what diversity of neurology has contributed to the human race and what it can bring to the future. Difference is not disability and someday, I hope, the world will recognize that those who think in different ways should be welcomed

Certainly difference is not a disability if you are a person with very mild Asperger's but for those persons with severe Autistic Disorder, some of whom freeze to death in snowstorms, drown in neighborhood pools, wander into traffic, bite their hands and chew their cheeks, bang their heads until bloody, starve themselves to death because of their intense aversion to many food tastes and textures or live their lives in institutional care; for many of these truly autistic persons, their difference is a disability. 

For the severely autistic their difference is a disorder, not a cool way to meet  a US President.

I am a Canadian with no right to pick a US President.  But like many people around the world I believed in the great promise of Barack Obama.

Now I am beginning to understand why so many are starting to reel from the great disappointment with the man who said Yes We Can and now has clearly signaled to families of autistic children that No You Can't.

There will be no autism cure sought during an Obama administration. Ari Ne'eman will see to that. 

autism

Stephanie Lynn Keil on Curing Autism

I most definitely want a cure for those most profoundly disabled; I want a cure for my most disabling aspects. Autism has ruined my life, like it has ruined many others: I can't lie.

And no, I don't believe the self-diagnosed have any right to speak for the most profoundly disabled or really for anyone with autism.

Stephanie Lynn Keil, Curing Autism, A Grand Illusion, November 30, 2009

Stephanie Lynn Keil is a person with an autism disorder who speaks honestly and from a very personal, non ideological perspective. Like Jonathan Mitchell and Jake Crosby she wants to be cured of her autism. Like them she will not likely be interviewed by the New Yorker, CBC, Time, Newsweek or CNN which will likely continue to feature the views of anti autism cure proponents. Fortunately the internet provides a means for Stephanie, Jonathan and Jake to advance their positions to counter, to some extent, the dangerous positions of the anti autism cure "self" advocates over whom the mainstream media fawns unrelentingly.

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Autism Research, Treatment and Cure

My son Conor is 13 and has a diagnosis of Autistic Disorder. He is assessed with profound developmental delays. His initial diagnosis of PDD-NOS at age 2 was changed to Autistic Disorder a short time later. In the 11 years since his diagnosis there have been significant changes in autism service delivery for children here in New Brunswick and elsewhere in Canada and the United States. But there has been almost no effort made at all to find new treatments or cures for autism disorders.

The latest mainstream media discourse on autism treatment and cure arrives courtesy of the Chicago Tribune which has published a series of articles beginning with criticism of the Autism One conference and continuing this past week with a generalized attack on alternative treatments, particularly those advanced by DAN practitioners. While the Tribune has spilled much ink attacking what it calls alternative autism treatments, and DAN practitioners, it has not printed a single period, comma or question mark asking why there has been no serious research seeking autism treatments or cures by establishment medical authorities.

In the eleven years since my son's autism diagnosis autism researchers have continued their obsession with genetic autism research. While there had been some hints of a new Autism Research Paradigm Shift that would explore the interaction of genetic and environmental research it has not matured into a prevailing mindset. Genetic research is still out funded by as much as 20 to 1 over environmental research. There is not so much as a hint of a possible new, evidence based, treatment or cure for autism on the research horizon. And there are few signs of research aimed at providing treatment or cure.

The Chicago Tribune is outraged at parents and professionals seeking and providing alternative treatments for autism. Yet it does not even dawn on the Tribune journalists to ask why this situation exists. The answer is simple. For decades health authorities and researchers have abandoned parents to their own devices to find help for their autistic children. They have failed to spend significant resources searching for possible causes, treatments or cures for autism and now parents who don't have the luxury of ignoring the realities of their child's autism disorders, who don't want to abandon the field are under attack.

The journalists who chronicle current events fail to ask why treatments are not available and they will not ask why. Environmental research whether it arises from vaccines, power plants, plastics, children's toys or pesticides could have a negative impact on economic interests. The health interests of children particularly if they are not properly explored and proven will always be trumped by major financial interests.

Whether the Chicago Tribune likes it or not though parents will not quit on their children. While the health establishment and researchers dawdle in genetic past times parents of children with autism disorders will continue to try and help their children with the resources available whether the Tribune and health establishment like those resources or not.

.

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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.

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Autism Rising in Chicago: Tribune Investigation Determines Autism Increase is Real

For the most part the article Autism treatments: Risky alternative therapies have little basis in science goes over old ground in attacking alternative autism therapies. At times it appears that the article is actually going to send current autism knowledge back to 1999 when Teresa Binstock outed the medical establishment for insisting that only genetic based autism research receive scarce funding dollars and that , by implication, environmental factors played no role in causing autism.

All of a sudden, almost out of the blue, the Tribune investigative report answers in the affirmative a question many have been asking by declaring that the startling rates of increase in autism over the past decade are real:

Chelation's popularity as a treatment for autism is driven by the unproven idea that the disorder is tied to accumulation of heavy metals in the body. Mercury, once common in vaccines as part of a preservative called thimerosal, is often pegged as the culprit. Yet the federal Institute of Medicine reported in 2004 that a review of dozens of studies had failed to show a link between vaccines, thimerosal and autism. Subsequent studies also found no connection. After thimerosal was removed from childhood vaccines except for some flu shots, autism diagnoses continued to rise.

Congratulations to the Chicago Tribune for its investigation confirming that autism is indeed rising; that the increases in autism are indeed real. Since genetics can not explain these startling increases it should be clear, based on the Chicago Tribune's conclusion, that the autism increase is real, that environmental factors have to be involved in causing autism disorders. Maybe the Tribune can now do an investigative piece explaining why health authorities have discouraged environmentally based autism research over the past decade and more.

Maybe if health authorities pushed research of some of those potential environmental causes or triggers they could find cures and parents would not be left on their own trying to help their autistic children without the benefit of help from, and usually under attack by, scientific and health authorities.

Maybe.

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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.

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Autism Cure Research Underway? Or Have We Given Up?

Parents of autistic children have searched for effective treatment, and preferably a cure, for their autistic children for many years. To date only Applied Behavior Analysis, ABA, enjoys strong evidential support as an intervention that can help autistic children learn skills, improve their ability to communicate and reduce problem behaviors. But, as a strong supporter of ABA intervention for autistic children I do not suggest that it is a cure.

Possible cures and treatments, such as HBOT, stem cell and chelation do not enjoy any substantial evidential support as treatments for autism disorders and can involve risk to the autistic person undergoing treatment. But what studies, if any, are currently underway exploring possible treatments or cures for autism? A planned chelation study was abandoned on the basis of risk to child participants in the study.

Do we really need to spend charitable and tax dollars to finance the latest Mottron-Dawson group study promoting the ability of a small group of High Functioning Autistic persons to out perform a small group of non-autistic persons on one specific test? As a parent I am constantly amazed at some of the things my autistic son can learn and do on his own but his overall understanding of language and the world and his ability to function in it are limited. Do we really need to fund studies to tell us that parents of autistic children suffer additional stress levels from the extra child raising challenges presented by raising autistic children? Do we need yet another genetic study to tell us that there is a strong genetic basis to autism while ignoring possible environmental factors?

As the parent of a 13 year old boy with Autistic Disorder, assessed with profound developmental delays, a boy who stims but does not produce choreographed Internet videos about stimming and "autistic" language, I would like to see research done that might have some actual value to my son. It would be nice to see research that actually helps the intellectual functioning, the understanding of the world, ability to function in the world, of those autistic persons who do not appear before the Supreme Court of Canada, the Canadian Senate or CBC and CNN cameras.

It is long past time that research money was spent on ways to help autistic persons overcome their deficits. If we study genetics we will find genetic bases for autism. If we study problem solving abilities of High Functioning Autistic persons we will learn more about the the abilities of HFA persons.

If we fail to study causes of, and look for cures for, autism then no cure will be found. And those who claim that "the notion of curing autism is nonsensical" will win by default and our autistic children will lose.

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Focused Autism Research

An American politician that I have always found fascinating is Senator Arlen Specter whose comments are usually thoughtful, balanced, nuanced and do not always follow "the party line". I rooted for him in his battle with Cancer. A recent commentator on this site has now brought my attention to Specter for the Cure and Senator Specter's efforts to promote research aimed at curing the diseases and disorders that afflict so many ... including autism spectrum disorders.

In Autistic Laughter? Conor's Laugh Is His Own, It Is NOT An Autistic Laugh I questioned the need to spend valuable research dollars on such subjects as "autistic laughter" which I view as little more than glorified stereotyping. I expressed the opinion that autism research moneys could be better spent on more serious issues aimed at autism education, treatment and ... cure.

I encourage everyone with a real interest in autism and other medical conditions to visit Specter for the Cure which aims at focusing research efforts on finding cures for medical diseases and disorders including autism. Autism Speaks has already hailed Senator Arlen Specter's Planned Introduction of the Cures Acceleration Network Act. Senator Specter is quoted on the Autism Speaks web site and makes it clear that autism research is one area that is in need of a focus on finding cures:

“Nothing is more important than curing the diseases that damage our spirits, hurt our families and take our lives,” said Senator Specter, himself a cancer survivor. “More money alone won't get us faster cures…we must do this on the scale and with the focus of the way we sent astronauts to the moon. And we need to start now. Americans battling cancer, autism, Alzheimer's, Parkinson's, diabetes and so many other dreaded diseases have not a minute to waste.”

Several members of the US House of Representative, Representatives Mike Doyle (D-PA), Chris Smith (R-NJ), Eliot Engel (D-NY), and Hank Johnson (D-GA), have introduced the Autism Treatment Acceleration Act of 2009, apparently in coordination with that focus on funding treatment and cure oriented research.

Specter for the Cure provides a link to Autismville author Judith U. 's well written comment, and very personal embrace of Senator Specter's Cure Acceleration Network efforts - Autism: Yes We CAN.

Focus is important if results are to be achieved. If treatments and cures are to be found for the various autism spectrum disorders it will be necessary to focus efforts and monies on research aimed at finding causes, treatments and cures. Enough with the autism laughter research. Let's find cures for autism spectrum disorders.

FOCUS!

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Change.org's Straw Man Attack On Autism Recovery

Change.org represents a progressive voice on many fronts but when it comes to children and adults with autism spectrum disorders it has chosen to embrace the regressive ideology of Neurodiversity (ND). The ND ideology is regressive on many fronts, it is inherently undemocratic in that adults with mild versions of autism disorders assert a right to speak on behalf of autistic children they do not know, some of whom are far more severely affected then they, by autism disorders. ND is also regressive in its opposition to cure or recovery from autism spectrum disorders, neurological disorders which impair the lives of many children and adults.

Change.org hired two ND bloggers, Dora Raymaker and Kristina Chew, both of whom subscribe to the "ND, autism can not and should not, be cured" manual. Ms Chew, although she is a parent who has recognized the serious deficits accompanying her own son's autism disorder by having him receive ABA therapy AND at least two autism targeting medications, frowns upon the notion of curing autism or recovery from autism. In "Recovery" from Autism: Fantasy and Reality Ms Chew again criticizes the idea of recovery from autism this time by a critique of The Horse Boy: A Father's Quest to Heal His Son, a recently published account of a father's apparent attempt to recover his son from autism by taking him to ride horses in Mongolia and visit with Shamans. Ms Chew justifiably critizes the bizarre notion that autism recovery could result from such activities. But she is not content to take a well deserved shot at Mongolian horse nonsense. She continues on with a rambling general attack on the concept of recovery from autism:

"I've yet to read The Horse Boy to see what its covers hold so, beyond expressing my reservations about talking about "healing" a child from autism---because focusing on "recovery" from autism twists discussions in endless circles about causes and treatments, rather than about lifelong needs and supports and services---I'll just say that life as some mixture of light and loss and goodness and dark----that has been what our journey with Charlie has been like. There've been many epic moments when I felt I was witnessing about the grandest thing the universe could provide---Charlie riding his bike on a street in a midsize north Jersey town, Jim pedaling proudly behind---and it's all been real, no fantasy, and the result not of magic but of hard work, of sweat, some tears, and love."

Kristina Chew has apparently abandoned the idea that her son with an autism disorder, who has received ABA, pharmaceutical and biomedical treatments for his disorder, will recover from his autism. I can understand the feelings that must bring about as he grows older, as my son is now 13, and realize that he will not be living an independent life. But I can not follow Ms Chew down the path of rejection of the concept of autism cure, treatment or recovery.

Cures might arrive with more research on causes of autism, a subject of which Ms Chew seems to be tired. If a safe effective cure or treatment can help my son in future I will want it for him. ABA was not generally available for Conor in his early years but has become available for him for several years because of determined advocacy by me and my fellow parents here in New Brunswick, Canada, because we had responsive , conscientious government leaders and because we had the assistance of some key academics and professionals who put together a unique program which has helped autistic children across New Brunswick. ABA does not mean recovery for Conor Doherty but it has meant acquisition of some important skills and in particular enhanced communication and reduced self injurious behavior. For some ABA might mean full recovery. For me Conor's gains, although not recovery, are enough to keep my spirits up and my hopes alive.

The studies and professional literature on autism interventions have been reviewed by such agencies as the American Academy of Pediatrics, the US Surgeon General, the NY State Department of Health, the Association for Science in Autism Treatment, the MADSEC (Maine) Autism Task Force and many others and these reviews of the literature indicate by means of various euphemisms, eg. "indistinguishable from chronological peers", that recovery is possible in some instances using ABA. These sources and the method they endorse, ABA, are much more informative than generalizations made from one person's experiences whether it be Kristina Chew's experiences with, and feelings about, attempts by her to recover her son from autism or my efforts with Conor which have resulted in some important gains for Conor, albeit far short of recovery. Because Conor is not near "recovery" though I do not attack the merits of others seeking recovery for their child from autism or the possibility that it occurs.

The Center for Autism and Related Disorders, Inc., which includes Doreen Granpeesheh Ph. D., who has had a formidable career actually helping autistic children recover from the negative realities of autism disorders, now has a blog site on which is posted articles and videos concerning recovery from autism. For examples of recovery, and informed balanced discussion of autism recovery, parents and the public would do well to skip past the anti-cure, ND pages of Change.org and visit the CARD blog site. The CARD people, unlike Change.org, are not ideologically opposed to autism treatment or cure. They have not given up on helping autistic children recover and they are backing up their ideas with action to actually help autistic children.

Recovery, according to some people actually dedicated to, and involved with, helping autistic children, is possible. Cures might be possible in future. Do not let a regressive ideology or one mother's fatigue and pessimism dissuade you from seeking to recover your child.

Avoid the horse and dolphin nonsense, for sure, but seek out credible, evidence based intervention and trained providers for your autistic child. And lobby your congressman or member of parliament to increase funding research into the causes of, and cures for, autism disorders.

Our children with autism disorders deserve our best, unfailing, and untiring efforts.

Do not, out of fatigue or fear, surrender to the ideology of defeat.

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Autism's Phony War

Autism has almost become a synonym for controversy.

The role that vaccines play, or do not play, depending on which camp one is a member of, generates the most heat and is often described as the vaccine-autism war, on this blog, generally, and by respected experts like Dr. Bernadine Healy. One issue that also generates controversy, and has been described as a "war", is the issue of whether autism should be cured or not. Unlike the vaccine-autism war though this war is a phony war, one that does not involve a serious contest between legitimate interests.

In the vaccine-autism war the public has a legitimate interest in ensuring the continuation of public vaccine programs. Parents concerned about their children also have a legitimate interest in ensuring the safety of substances injected often and directly into the bodies of their young children at early ages, including the first day they are born, and even while in the womb through vaccination of pregnant women. These intense and legitimate interests, generate much legitimate controversy.

Even the financial interests of pharmaceutical companies and vaccine patent holders like Dr. Offit are legitimate. Vaccines have saved many lives and without the financial interests of pharmaceutical companies and vaccine patent holders vaccines would not be produced. These competing, but legitimate interests, generate a real "war" in public discussions.

In autism's phony war there are no legitimate competing interests. The heat that does exist in public discussion of autism cures is generated largely by those with no legitimate interest in whether a cure for autism is found or not. The anti-cure "movement" is essentially the ideology of a few persons with High Functioning Autism (HFA) and Aspergers. These are generally intelligent, articulate people who can speak for themselves and who do not want to be cured of their autism disorders. All well and good. The thing is ....... no one is trying to force a cure on them for THEIR autism conditions.

No one, to my knowledge, is trying to force Michelle Dawson, Ari Ne'eman, Amanda Baggs, Alex Plank or any of the other HFA or Aspergers media regulars to seek a cure. These people speak about their opposition to curing autism in the abstract at best. At worst they are trying to interfere with the rights of other autistic people to obtain a cure and the rights of parents to seek a cure for their childrens' autistic disorders.

Jonathan Mitchell author of the Autism's Gadfly blog is a person with an autism disorder who has received the hostility of the anti-cure Neurodiversity autism bloggers because he does not accept their ideology. He has expressed the desire to be cured of his autism disorder. That is his right and his right alone. Harold Doherty does not have the right to tell Mr. Mitchell to be cured or not of his autism. Neither do Michelle Dawson, Amanda Baggs, Ari Ne'eman, Alex Plank or any other anti-cure autism ideologues.

For daring to express a desire to be cured of his autism Jonathan Mitchell has been described by one Neurodiversity extremist, "Timelord", as an autistic Joseph Goebbels. Timelord has also started a blog site specifically to target Jonathan Mitchell whom he smears wrongfully as a coward and a traitor, Mitchell's Gadfly. Timelord is a 40 year old unemployed Australian with Aspergers as described on his posted profile at another site he authors:

What right does Timelord Phil, an unemployed 40 year old, diagnosed with Aspergers Syndrome, have to tell Jonathan Mitchell, an autistic adult, that he should not seek to be cured of his autism? The obvious answer is: none. He has no right to oppose Mr. Mitchell's right to seek a cure. Period. When an autistic adult seeks a cure for his autism disorder other autistic adults have no legitimate competing interest and there is no real conflict, there is no real "war".

Some autistic persons, including children and adults, lack the cognitive and communication skills to live independently in the real world. Some injure themselves. Parents have a legitimate interest, a responsibility and a duty, to act to help their children develop to their fullest potential and to prevent injury to their autistic children when they seek to injure themselves. There is no competing societal interest. To the contrary society has an interest in ensuring that autistic persons are able to be cured of a disorder which causes serious pain and suffering and results in lives of dependency, often at state expense.

Self-injury is a problem for many people with autism disorders. I have seen it and shown it on this blog site with pictures of my son's self inflicted bite marks on his hands and wrists. Neurodiversity icon Michelle Dawson also testified about her personal autistic self injury in her Canadian Human Rights Tribunal proceedings Dawson v. Canada Post Corporation, 2008 CHRT 41. In that cased Ms Dawson brought several complaints against her former employer Canada Post Corporation alleging that CPC discriminated against her based on her disability: autism. The Tribunal rejected some of her complaints but found that some CPC employees had harassed Ms Dawson because of her disability and that CPC was responsible for the acts of its employees and officers.

In rendering its decision the CHRT summarized Ms Dawson's evidence and in particular Ms Dawson's own testimony about her self injurious behavior:

[58] Ms. Dawson testified that after she disclosed her diagnosis to Canada Post, everything went wrong. Before that time, even though Ms. Dawson came to work with self-inflicted injuries, this did not seem to create any qualms or concerns with respect to Canada Post. Things started to change, she stated in her testimony, after some Pierrefonds employees felt threatened by Ms. Dawson and sent a letter to that effect to Ms. Daoust in July 1999.

...


[97] In her testimony, Ms. Dawson spoke about her self-inflicted injuries. Ms. Dawson testified that, at the very worst, there was probably a week or two weeks where two weeks in a row, she would have something, that she would injure herself. She added, however, that this would be rare. According to her, she would self-injure about once a month and never more. She testified that for cuts, it would not be more than one small area affected and not more than one or two cuts, but they would be in the same place.

[98] Ms. Dawson testified that, well before Canada Post knew she was autistic, she would show up at work with self-inflicted wounds, that she did not suddenly start showing up with obvious signs of self-injury in 1999. According to her, any time after 1990, she would have had at times signs of self-injury, sometimes more than at other times, sometimes with long gaps.


Even the expert witness Dr. M, who, based on the Tribunal's description, was obviously Dr. Laurent Mottron, and who promoted his own pet theories about autism intelligence, acknowledged that autistic persons "sometimes" engage in self injurious behavior:


[110] Dr. M. testified that, while the ordinary person will become aggressive when anxious, autistic individuals will sometimes self-injure. This is especially the case, according to Dr. M., when an autistic person cannot understand a situation or cannot get an answer to a question. According to Dr. M., self-injury is the most extreme response to a psychological impasse that has no solution. It is a response to a disorganization of the world. It is the way for an autistic person to respond to negative situations whereas non autistic persons will show anger. Dr. M. stated in his testimony that he was aware of Ms. Dawson self-injury behavior. He had seen one of the wounds she had inflicted upon herself. For Dr. M., a self-inflicted injury is a sign of a deep psychological suffering.

I can't pretend to have any great respect for Dr. Mottron's views of autism generally. I don't care how many learned articles he has written based on his studies of persons with High Functioning Autism, Aspergers and Autistic Savants, his views about autism generally are inconsistent with what I have seen in my son with Autistic Disorder, with the knowledge that I have from working as a lawyer with families with autistic children and Aspergers, my involvement in autism advocacy in New Brunswick and my visits to psychiatric facilities where some autistic adults live out their lives in the care of strangers. Nonetheless even Dr. Mottron acknowledges that self injury is "sometimes" a feature of autistic behavior.

For the record here is a re-post of a picture of my son's self inflicted bite mark on his hand. (Dr. Mottron should also be informed that with ABA we have been able to increase our ability to communicate with Conor, he with us, and reduce such self injurious behavior) :


Those who oppose cures for themselves or for their autistic children have no right to oppose the development of autism cures for autistic adults like Jonathan Mitchell or for children whose parents seek a cure for their disorders. There is no legitimate basis for fighting to ensure that autistic children, particularly severely autistic children, should be prevented from being cured of a disorder which results in some cases in cognitive impairment, lives of dependency, and self injurious behavior. There is no legitimate basis to oppose the rights of parents to help their children live the best life possible without suffering from a debilitating neurological disorder.

Autism has many wars the cure or don't cure controversy though is a phony war between those with a legitimate interest in curing themselves of their autism disorder or their own children and those who oppose that right on abstract, ideological grounds.

Autism's phony war generates unnecessary heat and gives governments and service provides an excuse to refrain from providing needed services and funding for research. It does a great disservice to autistic adults seeking cures and for autistic children whose parents, acting in their children's best interests, and with the responsibility to do so, seek to cure them.

NOTE: At the request of Timelord Phil his picture has been removed from the profile posted above. The picture seemed innocuous to me, a picture of a guy in a black and white striped referee's jersey with his arms crossed, but it is his image and his request.

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