Sunday, May 31, 2009

Autism and the Joy of Conor on a Beautiful Sunday Morning In May

It was an unbelievably bright and beautiful Sunday morning in Fredericton. Conor and Dad had no choice but to hit the trail and enjoy the view at the river. Conor seemed happy, as usual , with a great big genuine smile on his face. Although I suppose that is just my anecdotal evidence as to whether Conor was happy and enjoying himself. Maybe some autism researchers can do a study and tell me how Conor was really feeling in the photo below.

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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.


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Saturday, May 30, 2009

Autistic Laughter? Conor's Laugh Is His Own, It Is NOT An Autistic Laugh

Jumping the shark is a colloquialism coined by Jon Hein and used by TV critics and fans to denote the point in a TV show or movie series' history where the plot veers off into absurd story lines or out-of-the-ordinary characterizations. .... The phrase refers to a scene in a three-part episode of the American TV series Happy Days, first broadcast on September 20, 1977. In the third of the three parts of the "Hollywood" episode, Fonzie (Henry Winkler), wearing swim trunks and his trademark leather jacket, jumps over a confined shark while water skiing.

Wikipedia, Jumping the Shark

Autism researcher and anti-ABA activist Michelle Dawson, has joined with William Hudenko, a clinician and researcher who presented a paper recently about the nature of autistic laughter, in arguing for the existence of a uniquely "autistic" laughter. I do not pretend to have read the Hudenko paper. I admit I do not have any inclination to read a paper that attempts to categorize autistic versus non-autistic laughter. The attempt to establish an "autistic laugh" is nothing more than an exercise in stereotyping, unacceptable in today's society when stereotyping based on race, age, gender, sexual orientation, ethnicity or physical disability.

My son Conor, diagnosed at the age of 2 with PDD-NOS, subsequently changed to Autistic Disorder as the development gaps between him and his chronological peers widened significantly, is a great joy in my life. As I typed this comment on the upstairs computer Conor came into the room with a great big Conor smile on his face to hang out with Dad. He knows how much I enjoy his presence. He knows that his presence makes me happy. Conor's smiles and laughs are his and his alone. They are not part of some imaginary "autistic laughter" stereotype dreamed up by autism researchers and ideologues.

When I commented on my own observations that Conor's laugh is genuine, that he laughs out loud with others and when he is in a room by himself watching a favorite video my comments, about my own son of 13 years, were dismissed by the ever arrogant ... and in this case out of touch with reality ... Michelle Dawson as being "anecdotal":

Replacing autism research with the anecdotes, assumptions and certainties of autism advocates (if Mr Doherty says so, it must be true) would I'm sure be popular with autism advocates.

Ms Dawson's use of the phrase "autism advocates" is actually code for parents of autistic children but since she doesn't want to appear anti-parent she uses the expression autism advocates sarcastically, a tone which permeates most of her writings.

I fully support scientific and evidence based approaches to understanding causes, treatments and hopefully some day cures, of autism spectrum disorders. I reject categorically though the attempt to stereotype all autistic persons as having the same personalities, even the same laughs. I do not believe in the existence of an "autistic laugh" which is not scientifically proven at all but is simply assumed to exist by Ms Dawson.

Some parents may look to Michelle Dawson for guidance about how to raise their autistic children, or how to understand them, but I am not one of them. And I absolutely reject , as pure unadulterated nonsense, her unscientific opinion that parents can not understand and interpret their own child's laughter. After 13 years of living with, caring for, and having fun with Conor I know his laughter is genuine, I know it is real and infectious, I know how much joy his laughter brings me each and every day.

Parents are often told that valuable, and limited, public resources should not be wasted on further research of possible vaccine autism connections (Despite statements to the contrary from Dr. Bernadine Healy, Dr. Julie Gerberding, Dr. Duane Alexandre and neurologist and successful vaccine autism litigant, Dr. Jon Poling). I suggest that valuable research dollars should not be spent trying to establish the existence of a unique "autistic laugh".

As a parent, as a human being, I do not need researchers to tell me what the smiles and laughs on of my son Conor pictured above mean. I have experienced them. In interpreting such everyday human expressions parental experience is more than just "anecdotal' it is first hand evidence, just as the pictures above are evidence. Can anyone see the pictures of Conor above and tell me that he is NOT genuinely smiling and laughing? Do you really need a research study to interpret and understand what Conor is feeling in those pictures?

Autistic children and adults need research into serious issues. William Hudenko and Michelle Dawson have jumped the shark with their "autistic laughter" nonsense. Valuable research dollars should not be scattered in their misguided waters as bait for the shark.

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Friday, May 29, 2009

Autism Treatment of Choice

As pointed out on Nesrhtens… ABA and thoughts… Sigmund Eldevik, Richard P. Hastings, J. Carl Hughes, ErikJahr, Svein Eikeseth, and Scott Cross have published an article in Journal of Clinical Child & Adolescent Psychology, Volume 38, Issue 3 May 2009 , pages 439 - 450, Meta-Analysis of Early Intensive Behavioral Intervention for Children With Autism, which reports the results of an examination of 34 Early Intensive Behavioral Intervention studies "9 of which were controlled designs having either a comparison or a control group". The article authors found large full scale intelligence changes and moderate adaptive behavior changes.

The authors concluded that:

"at present, and in the absence of other interventions with established efficacy, Early Intensive Behavioral Intervention should be an intervention of choice for children with autism. "

It will be interesting to see if ABA critical researchers respond with anything positive, that is to say, with word of an evidence based effective alternative. My best is that the usual nonsensical rhetoric will flow from the usual anti-ABA activists who will offer absolutely no evidence based alternative. Or they will simply argue that autistic children, even the severely autistic, should unlike all other children, simply be left to develop on their own with no effective assistance.

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Thursday, May 28, 2009

Autism Interventions: JEOPARDY!®

It may not be as glamorous as dragging your autistic child to Mongolia to ride horses, or to swim with dolphins and other large, powerful and dangerous sea animals but it is inexpensive, safe and ... effective. Conor goes to bed at Eight Zero Zero (8pm) every night. He would sit and watch the clock move toward 8 every evening. We encouraged him to watch the clock on the TV Guide channel for awhile but the same commercials (Your Huggable Car Dealer, Jim Gilbert Wheels n Deals) play over and over and provide little variety for Conor.

Lately we discovered something new (but old) for Conor as he waits for Eight Zero Zero - JEOPARDY!® . And it has been a blessing. On our local networks JEOPARDY!® is available from 7:30 to 8:00 pm and Conor loves it. Conor knows that Alex Trebek is the host and he sits quietly, and attentively, watching the show with its catchy musical themes, large letters and numbers and colorful but not annoying stage set. I don't know what, or how much, Conor learns from watching Jeopardy but it can only be positive. The level of language used in the show is excellent with an incredibly wide ranging vocabulary and nuggets of information. And there is no need to worry about inappropriate images or language.

Horses in Mongolia, swimming with dolphins, Lupron? Not a chance. ABA for sure. Trail walks and local family swims too. And with a little bit of JEOPARDY!® on the side. If nothing else Conor obviously enjoys watching the show. It's safe, inexpensive, he watches it calmly with Dad, and we both look forward to Seven Three Zero.

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Stanley Cup Prediction: Out With The Old, In With The New, Pittsburgh in 7

Pittsburgh over Detroit in 7.

The dance partners for this year's Stanley Cup final are now set: "Old" Detroit Red Wings and "New" Pittsburgh Penguins.

Hockey is very much a complete team sport but star players make a huge difference. For my money Detroit's Niklas Lidstrom and Chris Chelios are two of the best defencemen of the last 20 years, if not the two best. Against them, in this Stanley Cup final rematch, are the Pittsburgh Penguins led by scoring stars Sidney Crosby and Evgeni Malkin who will avenge last year's 4 - 2 series loss to Detroit.

I must again confess that I am lousy at making sports predictions and I may have just doomed Pittsburgh by picking them to win instead of Detroit; as I did when I picked France to beat Italy for the last World Cup.

Still, I believe this is the Year of the Kids: Sid the Kid and Geno

Out with the old, in with the new.

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Wednesday, May 27, 2009

False Autism Advocacy and the UN Declaration of the Rights of the Child 1959

Attacks on parents of autistic children advocating for treatment and cure of their autistic children have been ramped up of late. Jenny McCarthy is but one parent, albeit very high profile, who is vilified by mainstream media that typically report one side of the vaccine autism debate (the pro-vaccine side) and by the Neurodiversity ideological groups that insist that they know better than parents what is good for their autistic children. Some of the attacks are cheap and some are just plain irrational. All ignore the UN declared rights of autistic children to treatment and cure for their neurological disorder and their right to be represented, in the first instance, by their parents.

When a fully functioning adult with Aspergers or High Functioning Autism tells the world that "we don't want to be cured" referring to all persons, including children with severe autistic disorder, he, or she, is practicing false advocacy and is in fact advocating against the rights of autistic children to be treated for their neurological disorder, to develop fully and to be represented by their parents. When a person who can meet with judges, presidents and other potentates and conduct endless media interviews, purports to speak on behalf of a severely autistic child he, or she, does not know, a child who can barely communicate with the world he, or she, is practicing false advocacy.

Such persons, when they attack the parents seeking to treat their child's autism disorder, are advocating against the UN declared rights of that child.

Such persons are practicing false advocacy.

Declaration of the Rights of the Child

Proclaimed by General Assembly resolution 1386(XIV) of 20 November 1959

Whereas the peoples of the United Nations have, in the Charter, reaffirmed their faith in fundamental human rights and in the dignity and worth of the human person, and have determined to promote social progress and better standards of life in larger freedom,

Whereas the United Nations has, in the Universal Declaration of Human Rights, proclaimed that everyone is entitled to all the rights and freedoms set forth therein, without distinction of any kind, such as race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status,

Whereas the child, by reason of his physical and mental immaturity, needs special safeguards and care, including appropriate legal protection, before as well as after birth,

Whereas the need for such special safeguards has been stated in the Geneva Declaration of the Rights of the Child of 1924, and recognized in the Universal Declaration of Human Rights and in the statutes of specialized agencies and international organizations concerned with the welfare of children,

Whereas mankind owes to the child the best it has to give,

Now therefore,

The General Assembly

Proclaims this Declaration of the Rights of the Child to the end that he may have a happy childhood and enjoy for his own good and for the good of society the rights and freedoms herein set forth, and calls upon parents, upon men and women as individuals, and upon voluntary organizations, local authorities and national Governments to recognize these rights and strive for their observance by legislative and other measures progressively taken in accordance with the following principles:

Principle 1

The child shall enjoy all the rights set forth in this Declaration. Every child, without any exception whatsoever, shall be entitled to these rights, without distinction or discrimination on account of race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status, whether of himself or of his family.

Principle 2

The child shall enjoy special protection, and shall be given opportunities and facilities, by law and by other means, to enable him to develop physically, mentally, morally, spiritually and socially in a healthy and normal manner and in conditions of freedom and dignity. In the enactment of laws for this purpose, the best interests of the child shall be the paramount consideration.

Principle 3

The child shall be entitled from his birth to a name and a nationality.

Principle 4

The child shall enjoy the benefits of social security. He shall be entitled to grow and develop in health; to this end, special care and protection shall be provided both to him and to his mother, including adequate pre-natal and post-natal care. The child shall have the right to adequate nutrition, housing, recreation and medical services.

Principle 5

The child who is physically, mentally or socially handicapped shall be given the special treatment, education and care required by his particular condition.

Principle 6

The child, for the full and harmonious development of his personality, needs love and understanding. He shall, wherever possible, grow up in the care and under the responsibility of his parents, and, in any case, in an atmosphere of affection and of moral and material security; a child of tender years shall not, save in exceptional circumstances, be separated from his mother. Society and the public authorities shall have the duty to extend particular care to children without a family and to those without adequate means of support. Payment of State and other assistance towards the maintenance of children of large families is desirable.

Principle 7

The child is entitled to receive education, which shall be free and compulsory, at least in the elementary stages. He shall be given an education which will promote his general culture and enable him, on a basis of equal opportunity, to develop his abilities, his individual judgement, and his sense of moral and social responsibility, and to become a useful member of society.

The best interests of the child shall be the guiding principle of those responsible for his education and guidance; that responsibility lies in the first place with his parents.

The child shall have full opportunity for play and recreation, which should be directed to the same purposes as education; society and the public authorities shall endeavour to promote the enjoyment of this right.

Principle 8

The child shall in all circumstances be among the first to receive protection and relief.

Principle 9

The child shall be protected against all forms of neglect, cruelty and exploitation. He shall not be the subject of traffic, in any form.

The child shall not be admitted to employment before an appropriate minimum age; he shall in no case be caused or permitted to engage in any occupation or employment which would prejudice his health or education, or interfere with his physical, mental or moral development.

Principle 10

The child shall be protected from practices which may foster racial, religious and any other form of discrimination. He shall be brought up in a spirit of understanding, tolerance, friendship among peoples, peace and universal brotherhood, and in full consciousness that his energy and talents should be devoted to the service of his fellow men.

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Monday, May 25, 2009

Autism's Invisible Adults in New Brunswick

Much progress has been made here in New Brunswick (Canada) to help autistic children over the past 6 years. Despite substantial advances for autistic children though almost nothing has been done to improve the lives of autistic adults here in New Brunswick.

Many problems and gaps in service delivery for autistic children still exist but we do have government funded early intervention for autistic children with service provided by staff trained at the UNB-CEL Autism Intervention Training Program. UNB-CEL has also begun providing autism specific training Teacher Aides and Resource Teachers. ABA is used in our schools, my son has received ABA based academic instruction for 4 1/2 years. Accommodations have been made in the form of differentiated learning environments. My son is instructed in a small room separate from the mainstream classroom at our request and visits the mainstream classroom, the gym, the pool, the kitchen and the grounds for various activities that exposed him to other children who regularly greet him during my visits.

Government, the media, the public, autism organizations and autism advocates, we all ignore too often the needs, the realities even the existence of autistic adults particularly the severely autistic.

Out of necessity in New Brunswick autistic youths and adults in need of extra care and attention have been sent out of the province, even out of the country, to receive treatment. Autistic adults have lived, and continue to live. in psychiatric hospitals, at least one has even lived on the ward of a general hospital in Saint John. An autistic youth was kept on the grounds of a youth correctional centre in Miramichi New Brunswick until an opening could be found for him at Spurwink a facility operated by our good neighbors in the state of Maine.

New Brunswick's autistic adults need an autism specific group home system. The current system involves placing autistic adults in need of assisted living in general group homes with no staff specifically trained to address the needs of autistic adults. One such home closed with only 24 hours notice.

The most pressing need for New Brunswick's most invisible autistic citizens, the severely autistic is for a multi-level residential facility which could also provide treatment or proximity to treatment. I have visited the Restigouche Regional Psychiatric Hospital in Campbellton New Brunswick where some of New Brunswick's severely autistic adults live. I was very impressed by the management of the facility. It is a necessary residence for some New Brunswick adult autistic persons because of the absence of a modern autism specific residential facility. But it is not the home I would want for my severely autistic son when I am dead or otherwise unable to care for him. Nor do I want if for other severely autistic adults as they age.

Autism is a spectrum of disorders. The spectrum aspect though is often ignored .. by all of us. The adult, aged autistic element is also ignored ... by all of us. Here in New Brunswick we need a multi-level autism residential facility, centrally located, with access to other autism specific resources available in Fredericton to provide expertise to assist in the operation of the facility.

Autistic adults, particularly the severely autistic, need such a facility in New Brunswick now. The truth is they needed it years ago. We can't change the past but we can make a future different from that past. If we start NOW.

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Sunday, May 24, 2009

Autism's Invisible Adults In the New York Times

Congratulations to the New York Times for running a small guest opinion piece about the fate of autistic adults. The article, Growing Old With Autism, is written by Karl Taro Greenfeld, the brother of a low functioning autistic adult and the author of Boy Alone: A Brother’s Memoir. Mr Greenfeld makes the argument that the focus of autism awareness, fund raising and government response has been almost entirely on autistic children. The result has been a lack of resources in critical areas such as residential care and employment opportunities for autistic adults, particularly low functioning autistic adults.

Mr Greenfeld's brother is in his 40's and is low functioning. I am the father of a low functioning 13 year old who, like many parents in that situation, is struggling to prepare for my son's future. I am pleased to see the NYT devote some attention to this serious situation facing autistic adults, particularly low functioning autistic adults.

Mr. Greenfeld quite correctly points out the emphasis on autistic children in today's autism. awareness. Although he talks about his low functioning autistic brother's challenges he does not address directly another issue confounding the problem for low functioning children now becoming autistic adults - the media misrepresentation of autism disorders as being reflected in the realities of persons with high functioning autism spectrum disorders. By and large the media loves to dote on the high functioning autistic and Aspergian media trotters like Amanda Baggs, Michelle Dawson, Ari Ne'eman and Alex Plank. Few mainstream media features are built around the invisible autistics - the low functioning autistic adults living in institutional care or otherwise living very restricted lives dependant on the care of others.

This father of a teen age boy/young man with Autistic Disorder and profound developmental "delays" says thank you to Mr. Greenfeld and the New York Times for this small step towards reminding the world about the invisible autistics, the low functioning autistic adults, the ones who do not attend university, pose for fashionable photo shots in high powered magazines or run from camera to camera shouting "we don't want to be cured".

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Saturday, May 23, 2009

Autism Treatments: Will Experimental Stem Cell Treatment Help?

While the autism world buzzes over the Chicago Tribune's demolition of the Geiers and the Lupron treatment the need for evidence based treatments that might cure autism disorders remains unfulfilled and largely ignored by the medical research establishment. ABA is a solidly evidence based intervention which can help autistic children make substantial communication, intellectual, behavioral and adaptive skills gains. But the demand for a complete cure for autism disorders remains and as long as it does some parents will seek out non-evidence based treatments for their child's autism. Of course, treatments can not become evidence based unless experiments are undertaken. Hopefully, as in anything involving children, the best interests of the individual child involved will always be considered of primary importance. of Rochester reports that the parents of a Rochester, New York boy with autism are beginning their own autism "experiment" with stem cell treatment. reports that the Patterson family are taking their autistic son to Peru for stem cell treatment. The experimental treatment will cost $25,000. The Pattersons will be accompanied by Dr. Burton Feinerman:

"Dr. Burton Feinerman, a Mayo Clinic trained cellular therapy specialist, is working with the Pattersons. He has used the stem cell procedure on children who’ve had strokes, brain injuries and other neurological problems. " reports that the Pattersons have been assured that the procedure is safe although they have been no guarantees of success. Hopefully the procedure is indeed safe for the Patterson boy. The presence of a Mayo Clinic trained cellular therapy specialist, with actual experience in stem cell procedures, during the treatment suggests that it will be. Hopefully too the necessary steps will be taken to ensure that, whatever the outcome for the boy involved the results will have some scientific value, will be of some use in assessing the merits of this particular form of autism treatment, whether those results show promise ... or not.

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Thursday, May 21, 2009

Lupron and the Need for Evidence Based Autism Treatments

The Chicago Tribune has published two articles critiquing the use of Lupron as a a treatment for autism and, in particular, the Lupron treatment efforts of Dr. Mark Geir and his son. Autism drug Lupron: 'Miracle drug' called junk science and Autism drug Lupron: Father-and-son team's crusade shows cracks.

As the titles suggest the focus of the second article is on the Geirs personally and the fact that several tribunals have found them to be lacking in the necessary expertise and credibility to make the claims that they have made in vaccine court cases where they have testified many times in support of plaintiffs claims of vaccine induced autism.

The first article focuses more on the science in support of Lupron as an autism treatment, or more properly put, the lack of scientific or evidential support for Lupron as an autism treatment. The Tribune article seems fair and balanced to me, describing the existence of anecdotal evidence in support of Lupron's efficacy in treating autism but also describing the weaknesses inherent in anecdotal evidence and the dangers of this particular treatment.

Non-evidence based autism treatments may waste parents money and a child's precious development time, resources that might better be used for ABA therapy, a solidly evidence based therapy for helping children overcome some of the deficits associated with autism disorders.

In the case of Lupron the Tribune also points out that direct harm may actually result from the use of Lupron to treat autism:

"Experts in childhood hormones warn that Lupron can disrupt normal development, interfering with natural puberty and potentially putting children's heart and bones at risk. The treatment also means subjecting children to daily injections, including painful shots deep into muscle every other week.

These are serious, very serious dangers, and parents should think once, twice, three times before considering any treatment that exposes their child to such serious risks. They are taking a huge gamble with their child's health, safety and well being. It is not a gamble I would consider for my son Conor.

At age 13 Conor is already 5' 11" and he began the "teen years' development very early and with obvious physical changes. But under no circumstance will my son be receiving Lupron treatment or any other intrusive treatment that is not solidly evidence based and shown to be safe and effective in treatment of autism disorders. Conor receives ABA therapy and ABA based education at school.

One of the problems is that for many parents ABA is not immediate and does not "cure" in a traditional sense. It can result in very impressive and measurable gains in intellect, adaptive skills and social functioning. But ABA is subject to an ideological, and at times irrational, opposition from several quarters, often from people with no real stake in whether an autism treatment works or does not. This intense opposition creates a false impression that there are no significant therapies or treatments available so it is better to gamble with unproven treatments than to do nothing. Even Lisa Jo Rudy, a balanced and respectful commentator, blogger and autism mom routinely lumps ABA in with other non-evidence based therapies contrary to the assessments of autism interventions by several major and credible reviewing agencies. Such commentary blurs the distinction between evidence based and non-evidence based treatment.

Another major encouragement for the use of Lupron and other non-evidence based, and potentially dangerous, treatments is the failure of the medical research community to conduct research focused on understanding environmental causes and developing cures for the various autism disorders. While the Geirs' credibility and expertise have been soundly trounced in numerous proceedings the science which supposedly rejects concluisvely any possible vaccine-autism connection is not as solid as most mainstream media articles state. Even the 2004 IOM report did not state that a vaccine-autism connection had been disproven. It simply stated that the epidemiological studies to date did not support a connection but it also then discouraged, for policy reasons, the type of research that might have shown such connections.

The failure to rigorously investigate vaccine and other possible environmental causes of autism has also been accompanied by a failure to conduct research aimed at possible cures focusing on the causes found. From the days of Teresa Binstock's article in 1999 the medical establishment has preferred to pretend that autism has to be entirely genetic despite evidence to the contrary. Such an approach has helped protect from serous scrutiny the pharmaceutical industry and other industries that produce products containing toxic substances potentially damaging to the proper neurological development of children. Such an approach has also resulted in a failure to develop significant treatments and cures apart from Applied Behavior Analysis.

Most parents will not be foolish enough to believe that autism is anything other than what it is a neurological disorder which pervasively restricts their child's life and well being. Most parents will not be fooled into thinking that autism is a culture, a choice or a way of life. They will seek to treat and cure their autistic child. For many they will want a total cure not just the improvement in life skills and abilities that ABA can bring.

If this intense need continues to be ignored by the medical research establishment some parents will look to non-evidence based, and even potentially dangerous ,treatments. As long as medical research authorities abandon the field as they did with the insistence, for many years, on funding genetic based autism research only, and as they did when the 2004 IOM report expressly discouraged research that might have shown a vaccine-autism connection, some parents, unfortunately, will turn to unproven, potentially dangerous treatments for their child's autism disorder.

Fortunately, the IACC has shown with its new strategic research plan for autism an understanding of the need to broaden the base of autism research to examine possible environmental causes and contributors, including even possible vaccine connections. With such research may come the evidence based treatment that the medical establishment has failed to provide, a failure which has helped create a demand for Lupon and other non-evidence based autism interventions.

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Wednesday, May 20, 2009

Groundhog Day On Conor's Street

No autism in this comment. It was a beautiful sunny spring day and when we drove Conor home from school he headed right for the water balloons for some of his favorite fun. As we pulled up to our house though we noticed that our next door neighbor had a furry visitor, a groundhog, who was also taking advantage of the beautiful day to catch a few rays of sunshine on some bricks beside our neighbor's garage. No word on whether Bill Murray or Andie MacDowell will be showing up any time soon.

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Tuesday, May 19, 2009

Autism's Gadfly Takes lbrb's Kev Leitch to Task for Absurd Neurodiversity Logic

Autism's gadfly, Jonathan Mitchell has written a comment taking lbrb's Kevin Leitch to task for his loopy defense of Neurodiversity. In Left brain, right brain or no brain, Jonathan, as always, is exceedingly polite, a quality of discourse not always found at lbrb and other ND sites when trashing Jonathan for refusing to drink the Neurodiversity Kool-Aid.

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Vaccine-Autism War: National Post Junk Journalism Continues With Jenny McCarthy Attacks

Jenny McCarthy is an easy target.

For that reason the lazy, ill informed "journalists" at the National Post continue to attack Ms McCarthy in yet another doomed to fail attempt to quash public discussion of vaccine autism concerns. Meanwhile they continue to omit any reference to respected medical and research authorities like Dr. Bernadine Healey, Dr. Julie Gerberding, Dr. Duane Alexandre all of who have said that more research could and should be done on the issue. The junk journalists at the NP ignore Dr. Jon Poling a neurologist and father of an autistic child who brought a vaccine based autism claim to successful conclusion on behalf of his daughter when the government settled.

The NP despite having its attention brought to the Poling and Banks cases again omits any reference to these two cases in which it is known that the government settled vaccine autism claims. The NP omitted any reference to the IACC decision to include vaccine autism research in its strategic autism research planning. The NP omitted any reference to the criticisms of the epidemiological studies which are used to trumpet the position that the science has "decided" that vaccines do not cause or contribute to autism onset. The NP has omitted any reference to the well founded view that such studies do not examine the impact on vulnerable population subsets and possible connections to autism among such groups of children. The NP has omitted any reference to the fact that public health authorities have long discouraged the kinds of research that might disclose any vaccine autism connection.

In all fairness to the National Post Junk Journalists the issues listed above might be above their pay grade. Better for them to refrain from doing any real, hard journalism or any real, hard thinking.

Far better, and easier, to simply malign Jenny McCarthy. Of course those who actually know something about the subject and who want their concerns addressed will not be persuaded by such cheap, cowardly excuses for journalism

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Monday, May 18, 2009

Autism Blog lbrb: Left Brain, Right Brain Maybe But Not an Ounce of Common Sense

I am not a fan of Kevin Leitch author of Left Brain, Right Brain, father of an autistic child and a devoted follower of Ari Ne'eman and other Neurodiversity ideologues. In a recent post Mr. Leitch posted his answers to what he described as Frequently Asked Questions (FAQ) about Neurodiversity. His answers left me scratching my head and wondering if Mr. Leitch knows what he is talking about or whether there is any consistent meaning or substance to the Neurodiversity ideology.

If there is one constant that has existed in ND ideology it is that expressed so dogmatically by ideologues from Jim Sinclair to Ari Ne'eman: "WE, meaning all persons with any kind of autism disorder, do not want to be cured of our "autism"." Yet Mr Leitch denies that the No Cure position is part of the Neurodiversity ideology although he does so in a disingenuous way that avoids the real issue.

Many parents of autistic children seek to cure their autistic children or to treat their autistic symptoms. In full scale issue avoidance Mr. Leitch claims that ND believers are not opposed to parents treating their own children. They simply oppose parents trying to cure their children's autism disorders. It is OK to treat what Mr. Leitch describes as co-morbid conditions but not their essential autism. Mr. Leitch is being dishonest when he says that ND advocates are not anti-cure. They ARE anti-cure in the context in question. They oppose attempts to cure autism disorders pure and simple. Here is Mr. Leitch's goofy argument in his own words:

"3) Neurodiversity proponents say we should not treat our kids.

False. This is one of the biggest points of contention. The issue is one of autism (the main point) versus comorbidities (side points). See the WikiPedia definition of comorbidity. What are some comorbidities? Gastric problems, ADHD, ADD, Depression, migrane. Why would you imagine we don’t want you to treat these things? These things are not autism. They are comorbidities of autism. They cannot be used to illustrate or define autism as they are not common to every autistic." Don’t take my word for it. Go ask the Doctor who diagnosed your child. We see your error as the failure to differentiate between the comorbidity and the autism. To us, one is treatable. The other is not. We do not fight for your child’s right to have gastric issues. You see our error as trying to prevent your child being treated. My own daughter receives PECS and Speech Therapy. I would not stand in any parents way who wanted to alleviate the suffering of their kids. Having terrible constipation is suffering. Having a different kind of thought process is not."

What the highlighted passages make clear is that ND ideologue Kevin Leitch does not oppose your child's right to be cured of a gastric illness but does oppose your child's right, exercised through his or her parents as per the 1959 United Nations Declaration of the Rights of the Child, to be cured of his or her autism disorder. This is exactly what Neurodiversity is accused of when it is said that they are anti-cure. They oppose cures for autism. Mr. Leitch's dissembling denial confirms that very point.

This excerpt also illustrates how little Mr. Leitch actually appears to know about autism disorders. Having a different kind of thought process is not the issue. Having serious cognitive and communication challenges,and serious life adaptive issues, are described as frequently associated with Autistic Disorder as set out in the ICD-10 the European equivalent of the DSM-IV:

"In addition to these specific diagnostic features, it is frequent for children with autism to show a range of other nonspecific problems such as fear/phobias, sleeping and eating disturbances, temper tantrums, and aggression. Self-injury (e.g. by wrist-biting) is fairly common, especially when there is associated severe mental retardation. Most individuals with autism lack spontaneity, initiative, and creativity in the organization of their leisure time and have difficulty applying conceptualizations in decision-making in work (even when the tasks themselves are well within their capacity). The specific manifestation of deficits characteristic of autism change as the children grow older, but the deficits continue into and through adult life with a broadly similar pattern of problems in socialization, communication, and interest patterns. Developmental abnormalities must have been present in the first 3 years for the diagnosis to be made, but the syndrome can be diagnosed in all age groups.

All levels of IQ can occur in association with autism, but there is significant mental retardation in some three-quarters of cases.

Many parents of severely affected children with Autistic Disorder do not need to read a diagnostic manual to know that autistic disorder can result in serious self injury, threat to a child's life and a life of dependence on the care of others. I have a son who has bitten his hands and wrists many times and I have posted pictures on this blog site of such injuries. I advocated with other parents to keep a tertiary care pediatric team dedicated to autistic children in existence at the Stan Cassidy Rehabilitation Centre here in Fredericton. I know they deal with serious life threatening behaviours in autistic children including head banging, self starvation and other serious threats. I have visited psychiatric facilities in New Brunswick and seen autistic adults living there who were too severely affected by autism to live in community based group homes. Mr. Leitch can cling to his faith in ND and his belief that autism is just a different way of thinking. I have too much common sense and have seen too much to take such a dangerously naive approach to autism disorders.

Mr. Leitch is not done with his non-reality based defense of Neurodiversity. He goes on to trivialize the point made by many parents who, as I do, claim that Neurodiversity is led by persons with Aspergers Disorder or have high functioning autism distinguishable from Aspergers largely by an initial period of limited speech:

4) Neurodiversity proponents who are autistic are different than my child.

"True. They are mostly adults. Your kids are kids. However I don’t think thats your point. You believe that all autistic Neurodiversity proponents are ‘high functioning’. This is untrue, both now and historically. The facts are that for a lot of the autistic adults in the Neurodiversity movement their diagnosis was ‘low functioning’ when they were kids. But people grow and progress. Autism doesn’t stop progress, it just sets a different timetable for it. These adults are living breathing proof."

Mr. Leitch's argument expressly assumes that all autistic children will eventually progress. His statement that the ND adults are living proof is absolute nonsense. Pure nonsense. Every human being progresses on their own time table to the extent that they make any progress. The problem that Mr. Leitch skips over is that many children with autistic disorder do not progress to attend Simon's Rock College for gifted youths, attend university, have girl friends, boy friends and spouses or grant endless media interviews to the New Yorker, the CBC, Newseek etc. There are many autistic adults living dependent on the care of others in varying degrees of group home and institutional existence. Mr. Leitch simply ignores these autism realities. His argument on this point is too ridiculous to be entertained with a straight face.

7) So why do neurodiversity proponents say they speak for my child?

"The way I see it is like this – I and my wife know our daughter better than anyone else alive. Whilst she is a child, we speak for her in all matters. But the fact is that she is autistic. It therefore is simple common sense that other autistics have thought processes closer to those of my daughter than any NT does. They think in similar ways. Its not a case of speaking for, its more like having a shared reality. If one or more of my kids were gay than I would still speak for them in all matters whilst they were children but not being gay I could not share that reality in the same way as other gay people could. By virtue of their shared reality of autism our kids and autistic adults share an area of being that NT parents can never share. Like it or not, that does give them a commonality and communal existence. With that community sometimes comes a voice. Can you really say, as NT parents, that you are closer in thought process to your kids than autistic adults? When it comes to what makes autistics tick can you really say that you as NT’s know better than other autistics?"

Mr. Leitch is free to let people who have never met his child speak on her behalf. I am one parent who would never surrender that right, responsibility or privilege to anyone let alone a stranger whose only connection is a similar diagnosis. The DSM and ICD-10 both recognize a multiplicity of pervasive developmental (autism spectrum) disorders. The differences between Ari Ne'eman's Asperger's Disorder diagnosis and my son's Autistic Disorder diagnosis are very substantial. Aspergers precludes clinically significant cognitive and communication delay which can be present with Autistic Disorder. These are incredibly important aspects of what makes my child tick as Mr. Leitch says. Even within each diagnostic label it is recognized that there significant differences in the extent to which people are affected for example by Autistic Disorder.

In the real world I know as the parent of a 13 year old child with Autistic Disorder and profound developmental delays, who requires 24 hour supervision, who operates at a functional level far below his chronological peers, that my son has little in common with Amanda Baggs who attended Simon Rock college for gifted youths or the media trotting, university student Ari Ne'eman. Nor does he have anything in common with Alex Plank or his now ASD diagnosed girl friend who appears in videos giving public presentations worthy of any good corporate executive.

You may not know what makes your child tick as well as these many strangers do Mr. Leitch but this father who spends each day with my son certainly knows better than they what makes my son tick. It's not even close.

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Stephanie Lynn Keil's New Site

Talented autistic artist Stephanie Lynn Keil has a new blog. The blog is actually one element of a larger site Stephanie Lynn Keil. It is a fresh new site and is not yet complete. One of the features that Stephanie will be developing, and that I look forward to seeing, is a portfolio of some of her art work. Stephanie is also continuing to talk honestly and courageously about her personal life experiences including the challenges posed by her autism. I encourage everyone to continue to visit Stephanie's site and blog, to enjoy the art work she will be posting and to show more respect in their commentary then we are all used to seeing in internet autism discussions and debates.

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Sunday, May 17, 2009

Ari's Omission : Autistic Disorder and Aspergers Disorder are Critically Different Disorders

Why do some persons with Aspergers Disorder insist on the right to speak for persons with Autistic Disorder, to tell the world that persons with Autistic Disorder do not want to be cured, and why does the media let them get away with it?

Newsweek has now become the latest stop for Ari Ne'eman, a very intelligent, highly articulate gentleman with Aspergers who persistently purports to speak on behalf of all people with "autism". Ne'eman, with Aspergers Disorder, expresses his opinion, as a person with "autism", about what is good for children with Autistic Disorder a related but distinct Disorder in the Pervasive Developmental Disorder category of the DSM-IV. One of his central themes which he delivers on behalf of persons with autism is "we don't want to be cured". Good for the intelligent, articulate Ari Ne'eman but does he have the right to make that claim on behalf of persons with Autistic Disorder with communication deficits and in many cases cognitive impairment people, including children with whom he has little in common?

Many children and adults with Autistic Disorder suffer from cognitive and communication deficits which seriously impair their ability to understand and function in the real world. Those with Aspergers Disorder like Ari Ne'eman do not have cognitive impairment or serious language impairment ... by definition.

DSM-IV Diagnostic Criteria for Aspergers Disorder and Autistic Disorder

The DSM (Diagnostic and Statistical Manual, American Psychiatric Association) diagnosis criteria for Aspergers Disorder expressly exclude impairments in cognitive AND communication development:

(IV) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)

(V) There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.

The reality for many people with Autistic Disorder is much different when it comes to delays, some permanent, in cognitive development and language:

(B) qualitative impairments in communication as manifested by at least one of the following:

1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)

2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others

3. stereotyped and repetitive use of language or idiosyncratic language

4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

The DSM does not expressly state that cognitive development is a diagnostic criteria for autistic disorder but it is clearly implicit in the list of developmental deficits that cognitive deficits or mental retardation would be associated with these serious deficits in many cases.

ICD-10 Diagnostic Criteria for Aspergers Disorder and Autistic Disorder

The European equivalent of the DSM, the ICD-10 Classification of Mental and Behavioural Disorders states this obvious point expressly in distinguishing between Autistic Disorder and Aspergers Syndrome. Under the ICD-10 an Asperger's Syndrome diagnosis expressly excludes

Autistic Disorder


In addition to these specific diagnostic features, it is frequent for children with autism to show a range of other nonspecific problems such as fear/phobias, sleeping and eating disturbances, temper tantrums, and aggression. Self-injury (e.g. by wrist-biting) is fairly common, especially when there is associated severe mental retardation. Most individuals with autism lack spontaneity, initiative, and creativity in the organization of their leisure time and have difficulty applying conceptualizations in decision-making in work (even when the tasks themselves are well within their capacity). The specific manifestation of deficits characteristic of autism change as the children grow older, but the deficits continue into and through adult life with a broadly similar pattern of problems in socialization, communication, and interest patterns. Developmental abnormalities must have been present in the first 3 years for the diagnosis to be made, but the syndrome can be diagnosed in all age groups.

All levels of IQ can occur in association with autism, but there is significant mental retardation in some three-quarters of cases.

* autistic disorder
* infantile autism
* infantile psychosis
* Kanner's syndrome

Asperger's Syndrome

A disorder of uncertain nosological validity, characterized by the same kind of qualitative abnormalities of reciprocal social interaction that typify autism, together with a restricted, stereotyped, repetitive repertoire of interests and activities. The disorder differs from autism primarily in that there is no general delay or retardation in language or in cognitive development. Most individuals are of normal general intelligence but it is common for them to be markedly clumsy; the condition occurs predominately in boys (in a ratio of about eight boys to one girl). It seems highly likely that at least some cases represent mild varieties of autism, but it is uncertain whether or not that is so for all. There is a strong tendency for the abnormalities to persist into adolescence and adult life and it seems that they represent individual characteristics that are not greatly affected by environmental influences. Psychotic episodes occasionally occur in early adult life.

Diagnostic Guidelines

Diagnosis is based on the combination of a lack of any clinically significant general delay in language or cognitive development plus, as with autism, the presence of qualitative deficiencies in reciprocal social interaction and restricted, repetitive, stereotyped patterns of behaviour, interests, and activities. There may or may not be problems in communication similar to those associated with autism, but significant language retardation would rule out the diagnosis.


* autistic psychopathy
* schizoid disorder of childhood

In both the DSM and the ICD manuals Aspergers and Autistic disorders are distinct with Aspergers expressly excluding general delay in cognitive and communication development. These distinctions should be made clearer in the DSM V revision and separated from the same "spectrum" that has caused so much misunderstanding.

Ari Ne'eman a very intelligent, highly articulate gentleman with Asperger's Disorder has every right to speak on his own behalf and on behalf of those persons with Aspergers who agree with his views. Mr. Ne'eman has no right to suggest that persons with Aspergers and persons with Autistic Disorder are fundamentally similar. They differ by definition in the critically important areas of cognitive and language development. Ari Ne'eman does not have these deficits and can not begin to appreciate the challenges that having those deficits brings to the lives of persons, like my son Conor, who has an Autistic Disorder diagnosis and is assessed with profound developmental delays.

Aspergers includes social impairment. Autistic Disorder includes social impairment but also includes substantial delays and deficits in language impairment and, in many cases, cognitive development. It is hard to imagine any two areas, communication and cognitive functioning, any more important to daily life. And yet, despite these two critically important differences they are not separated clearly enough as disorders in the DSM. The result is widespread public confusion and misguided advocacy.

The impending DSM-V should do everyone a favor and separate more clearly these two disorders with fundamentally different diagnostic criteria in areas central to any human existence - communication and intelligence.

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