Some Autism Myths Will Never Die

 Some autism myths will never die:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Autism Murder Charges - Time To Pull Our Heads Out Of The Sand

In recent days and weeks two severely autistic young men have been implicated in homicides. In one case, a young man with autism has been implicated in the death of his mother who publicly professed her deep love for her son and the joy that he brought to her. In each case the legal process will unfold and determinations will probably have to be made about the competency of the young men charged. The evidence and facts will determine each case, not the opinions of internet bloggers and media editorialists.

In a general sense though both cases, regardless of the outcomes of the legal processes, point to the need to discuss autism honestly, to describe realistically the challenges faced by persons with autism disorders and family members and others who care for them. As the father of a boy with Autistic Disorder, assessed with profound developmental delay I have seen our beloved son injure himself with biting, and expose himself to greater risks by putting his hand through glass windows and wandering off onto busy streets oblivious to the dangers of automobile traffic. I have also watched with dismay the persistent attempts by some persons with high functioning autism and Aspergers Disorder, and some misguided parents of autistic children, to whitewash the unpleasant realities faced by some persons with autism disorders, their family members and caregivers.

The end result, whether it be court proceedings, where I have occasionally appeared on behalf of some persons with Aspergers Disorder, or lives spent in institutions, two of which I have visited here in New Brunswick, Canada, is not always pretty. We do no favors, no favors at all, to the autistic persons in our lives, if we ignore the negative realities faced by some with autism challenges because other persons with higher functioning autism or Aspergers will feel offended.

Jim Sinclair, Amanda Baggs, Ari Ne'eman, Michelle Dawson, Jypsy, Estee Klar, Kristina Chew, Dora Raymaker and other Neurodiversity ideologues take offense whenever someone discusses negative autism realities. They sign petitions, launch media petitions and attempt to suppress any negative imagery or description of the more severe autism challenges. Such suppression will only prevent the development of possible cures and treatments, or prevent the application of existing well substantiated interventions like ABA. In fact Neurodiversity ideologues openly oppose existing, effective ABA and the search for future cures and treatments. Searches for causes and cures of autism are opposed relentlessly and those seeking cures for their own autistic children are villified by Neurodiversity ideologues. Even the reference to autism disorders as medical disorders is verboten.

Neurodiversity ideologues are unlikely to change. Their views are entrenched and tied to their own public careers as professional "autistics" or "enlightened" autism parents. The truth is that they discourage society from addressing the harsher realities of autism by effective therapy, treatment or cure. They help keep members of the public from understanding the full nature of autism, particularly as it affects the most severely autistic. Theirs is a movement whose aim is to keep everyone from facing autism reality. Theirs is a movement which wants society to keep our heads in the sand and ignore autism reality.

The murder charges against two young autistic men who may have had little control over their actions, who may have had no intent as the law, and society generally, understands that term should be a call that we all hear - a call to pull our heads out of the sand.

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Autism Mother Marni Wachs Discusses Neurodiversity

Note: I received the following thoughtful comment on autism and neurodiversity from Marni Wachs, an autism mother, and, with her permission, I am posting it here as a "guest blogger" commentary.



Harold Doherty

Re: Jim Sinclair' s Work "DON'T MOURN FOR US: a message for parents of autistic children"


I admire and appreciate the important and necessary work of Jim Sinclair for both autism, and in general for people with disabilities. It is an extremely well-written and concise expression of rights of those with disabilities, the folly of many parents in missing the individual beauty and development of their own child in the constant misguided comparison with an incomparable standard, and the need for public accommodation and acceptance of autism as a different way of being. I myself have used that expression, "a different way of being"' in conversation, and it describes autism well, without defining it as less-than.

I do not, however, accept the entire message and implications of the neurodiversity perspective. I understand the need for a concise theory, but sometimes the neat and tidy package does not fit some of the intricacies of reality.

I do not accept a logic chain that precludes reasonable treatment efforts particularly early education / intervention from being defined as anything but unacceptance, of one’s child and autism in general. I fully love and accept my child, regardless of the abilities he has now or in the future. I don’t accept that it makes me a lesser parent in that I am sending the message that my son is “not good enough” or I don’t accept him as he is. I am a full parent to my children. The same parenting ideals hold for my daughter who is neuroytpical. I am parenting her, based on my love, her needs and what will help her to live a full and happy life. I have always worked hard as a parent to educate her. Does that then imply that I do not accept her? Of course not, it means that I want to educate, stimulate, give options for how to be in the world, teach skills to foster communication and connection with others, as much independence as possible by trying to be the best possible
parent.

If you logically extend Jim Sinclair’s argument, then no child is accepted if they are being educated. If we accepted children as they are, then we would not need to alter their natural state of being by educating them. Would the neurodiversity perspective have me feel guilty or wrong for parenting appropriately as per my definition of good parenting?

Sinclair’s stance works well for natural disabilities, but autism may not always necessarily be the natural sate of being for a particular individual. I do believe there may be some on the spectrum who have autism from a genetic basis, or that autism began before birth, which may indeed fall completely under the neurodiversity umbrella. However, the possibility of environmental triggers playing a role in autism exists, which would mean the possibility exists for reversal or treatment of same, as an unnatural state of being in certain cases. I love my son whether he was born with autism, developed it in utero, or was injured environmentally at some point which triggered or enhanced it. Just as parents whose children have cancer fully love and accept them, but still want to find a cure or treatment, as well as give them an enriching and happy life, how ever the condition progresses, so I want for my son. As for using cancer as a comparison, the comparison begins and ends with the way I have used it specifically in the above example.

I agree with Mr. Sinclair that rigid insistence that the child with autism communicate with neurotypical people in only a neurtotypical fashion is selfish and narrow-minded, as well and limiting to the parent-child relationship and the child’s development. I agree with the need for those with autism to have allowances, accommodations, ways and places to be in the world. Education of the public regarding the rights of those with autism is sorely needed.

I applaud the work and feel that the neurodiversity perspective is a necessary part of public education and awareness, but I wish the perspective did not require a scapegoat to secure the strength of its message. Parents benefit from such guidance to a point, but not the accompanying pressure and judgment.

Words cannot define the overwhelming love I feel for my son, and no “perspective” will tell me that I am not acting in his best interests, and that I as his parent, am in the appropriate position to do so.

Finally, I fully and unconditionally love and accept my son (and always will), and I want the very best education and treatment for him. The two concepts are not mutually exclusive.

Marni Wachs
Winnipeg, Manitoba

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Autistic Children Grow Up

Autistic children grow up.

They get taller, bigger, stronger. And like other parents we must adapt as they do, both to continue to enjoy their presence in our lives and to help them develop to their fullest potential. For some parents of autistic children the physical growth of their children also represents a point of departure; they must part company with their autistic children whose behavioral challeges can no longer be accommodated coming from the large, powerful frame of an adult. The brutal reality is that some parents (particularly mothers) and siblings are physically attacked by the autistic children, brother or sister for whom they care so deeply.

I have read on the internet heart wrenching stories of parents who have had to make the agonizing decision to send their autistic child/adult to live in residential or institutional care. As a lawyer I have provided some pro bono legal services to parents struggling with the challenges of caring for autistic children who have been aggressive to them and had become a risk to family members. Such realities are not the usual autism fare of CNN, New York Magazine or Good Morning America. They are real none the less for the parents who care for these children and mourn, (yes Jim Sinclair MOURN), the premature loss of their children.

Above are pictures of our son Conor, 12, with his mother, Heather (also author of Goody Bledsoe, see right side of page). Conor, diagnosed with Autistic Disorder, is now slightly taller than his mother. He grew like a weed this past year, with the usual changes that accompany that stage of life. When Conor is outside the house by himself, in the yard or on one of the steps, we check constantly. Sometimes visually, sometimes by asking him to say "Hi". On one such occasion I was startled by the deep man's voice that answered. It was Conor's voice, no longer the voice of a boy.

Conor is aggressive on occasion. We have "managed" the aggressive aspects of his behavior, thanks in large part to Applied Behavior Analysis therapy which has also helped Conor with so many areas of life. But there are still times when it is difficult. And we know that a day will likely be coming when we will no longer be able to have him with us in our home. As Conor grows bigger and stronger and we grow older and weaker.

In the meantime though we enjoy Conor and all that he has brought to our lives. We do not subscribe to the misguided "autism is beautiful" ideology that urges people to find joy in their child's neurological disorder. We accept the realities of Conor's autism, we face those realities and we try to do something about them, to help Conor overcome them to the fullest extent possible. We do so with great joy, the joy of Conor, a fun loving, affectionate but challenging blessing in our lives. For as long as we can.

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

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

Mr. Plank according to the Tribune article:

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

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

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

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

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

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Autism's "Royal We"

Autism discussions are often marked by the use of the "Royal We" (or its variation the "Royal Us") in which some persons with either Aspergers or high functioning Autism implicitly speak on behalf of all persons with autism. Wikipedia explains the Royal We:

Pluralis majestatis

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Pluralis majestatis ("majestic plural") is the plural pronoun where it is used to refer to a single person holding a high office, such as a monarch, bishop, pope, or university rector. It is also called the "Royal 'we'" or the "Victorian 'we'." The more general word for the use of we to refer to oneself is nosism.^[1]

The idea behind the pluralis majestatis is that a monarch or other high official always speaks for his or her people.^{[citation needed]} For example, the Basic Law of the Sultanate of Oman opens thus:

On the Issue of the Basic Law of the State We, Qaboos bin Said, Sultan of Oman…^[2]

Famous examples of purported instances:

• We are not amused. — Queen Victoria (in at least one account of this quotation, though, she was not speaking for herself alone, but for the ladies of the court.^{[citation needed]})
• The abdication statement of Nicholas II of Russia uses the pluralis majestatis liberally, as in "In agreement with the Imperial Duma We have thought it well to renounce the Throne of the Russian Empire and to lay down the supreme power."^[3]
• 
  

Arguably the most famous use of the Royal We is the essay by Jim Sinclair "Don't Mourn For Us". Apart from the title Don't Mourn For Us is rich in Royal We declarations"


I invite you to look at our autism, and look at your grief, from our perspective:

This is what we hear when you mourn over our existence.

This is what we hear when you pray for a cure.

This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.

But don't mourn for us. We are alive. We are real. And we're here waiting for you.


"King Jim" Sinclair went well beyond the Royal We in presuming to speak on behalf of all autistic children including those with Autism Disorder, some of whom lack his considerable intellectual and communication gifts. He also used his Royal Insight to tell parents of children newly diagnosed with autism what they were thinking and feeling in responding to the realities of their children's diagnoses. "We" were in fact mourning the child we should have had, wishing we could replace the people behind our children's faces with entirely new non-autistic people. Bad, bad parents, we should all be banished to the stocks. And if you can believe some of essays by parents of autistic children praising autism as a different perhaps better way of thinking and living, praising the joy of autism, it appears they at least heard the Royal message. Treatment bad, cure bad, ABA bad, autism good, autism joyful.

Of course no mention of Autism's Royal We would be adequate if it made no reference to another very high functioning autistic adult, diagnosed as an adult, who also uses the Royal We in her relentless anti-ABA campaigns before courts, Parliament and the media in Canada. In The Word Is Out About Autism, Canada In The Era Of Autism Advocacy Michelle Dawson also made extensive use of the Royal We, "Queen Michelle" told the Canadian Senate Standing Committee
on Social Affairs, Science, and Technology that:


There is no consideration of who autistics might be and what we might need. Either we are horribly sick or we aren’t, depending on what non-autistics need.

Either we are horribly sick or we aren’t, depending on what non-autistics need.

we are most reliably defined by our strengths, our innate autistic strengths, which exist in all autistics regardless of how our level of functioning is judged.

1. That this Committee, and the Senate as a whole, apologize to autistic Canadians, for using your power and resources to promote and distribute false and pejorative information about autistics which is likely to be damaging and dangerous to us.

3. That the above-mentioned final report make it clear that autism is not a mental illness; that autism is receiving a great deal of attention due to the efforts of autism advocates; and that this attention, because it arises from factually false and ethically indefensible portrayals of autistic people, has harmed and damaged us.

Apparently though, not all higher functioning autistic persons reside in the Royal Autism Courts of King Jim or Queen Michelle. In Autistic Blogger Jonathan Mitchell Says NO To Neurodiversity I commented on a blog, NEURODIVERSITY: JUST SAY NO , by Jonathan Mitchell, an autistic person who rejects the anti-cure, anti-treatment, ideology promoted by Sinclair and Dawson and who asserts that some autistic persons DO wish to be cured. That post prompted some hostile, personal attacks on Mr. Mitchell which prompted my follow up commentary "House Autistic" Or More Neurodiversity Trash Talk.

Mr. Mitchell challenged the assumption that the anti-cure ideologies of some autistic persons represented the views of all autistic persons and for that was decried as a "liar":

A number of high functioning autistics claim that there is a consensus among all autistic persons that finding a cure for autism would be a horrible thing. Autism is a part of who they are and to take away the autism is to take away the person. They go further to claim that autism is not really a disorder but just a different form of brain wiring--some call this philosophy "neurodiversity".

Some of them do acknowledge that autism is a disability. However, there is a distinction between a medical model of disability-wherein the person has a disease state and the social model of disability--the disabled person would not be at a disadvantage if society made accommdoations for them.

I am a diagnosed autistic, nonverbal, feces smearing at age 3, 8 year veteran of special education yet I do not share this view. I long for a cure for autism though a cure at age 52 is not the same as at age 3, even in the unlikely event of a cure being found in my lifetime. Somehow I got missed when they took the census. So they are incorrect about all autistics.

Mr. Mitchell is not the only autistic person who rejects the anti-cure ideologies of King Jim and Queen Michelle. There are in fact other high functioning autistic persons for whom they do not speak. And it is difficult to see how they speak at all on behalf of those autistic persons with whom they have very little in common.

People as eloquent as Jim Sinclair or as intelligent as Michelle Dawson do not share the same realities of life as a much lower functioning autistic person with limited communication skills and limited understanding of the world, someone like my son Conor. Like Ms Dawson I once worked for Canada Post, albeit as a lawyer. It can be a complex and challenging work environment regardless of one's position. To be a letter carrier or postal clerk requires signficant command of language. My son does not know what Canada Post is, he does not know what a PO Box or postal code is, or what it represents.

Jim Sinclair and Michelle Dawson are free, in democratic societies, to use the Royal We in presuming to speak on behalf of all persons with Autism. But my son Conor Doherty, diagnosed at age 2, with Autism Disorder, with profound developmental delays does not sit as a subject in their courts. If safe, effective, treatments and cures are found for him then I will not hesitate to seek their application for Conor's benefit, to improve his life, to help him experience life to the fullest.

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