Misleading Autism Treatment Statements at About.com Autism

Lisa Jo Rudy at About.com Autism, for reasons unknown to me has made misleading statements about the evidence in support of the efficacy of various autism treatments. Coming on the heels of the recent Deborah Fein study showing that 10-20% of subject children with autism recovered from their autism with Intensive Early Behavioral Intervention ... ABA ... it is surprising to see About.com Autism apparently react to that study with the assertion that all autism therapies are created equal. Ms Rudy and About.com Autism appear to have turned their backs on evidence based assessments of autism treatments.

Ms Rudy stated in Can All Positive, Intensive Therapies Help Kids with Autism?:

As a result, there's no good way to know whether a child who received Floortime would have done better with RDI or ABA. Certainly, evidence shows that most children with autism improve to varying degrees with intensive therapy, no matter what its name.

Apart from the recent Fein study demonstrating full recovery as set out above other studies and reviews of those studies have unequivocally indicated that only ABA enjoys a solid evidence basis in support of its effectiveness:

The MADSEC (Maine) Autism Task Force assessed the evidence basis in support of various autism interventions as of 2000 and found that only one, ABA, met the highest standard:

"Based upon a thorough examination of numerous methodologies considered as interventions for children with autism, the MADSEC Autism Task Force has characterized the interventions reviewed as follows:

• Substantiated as effective based upon the scope and quality of research:
Applied behavior analysis.

In addition, applied behavior analysis’ evaluative procedures are effective not only with behaviorally-based interventions, but also for the systematic evaluation of the efficacy of any intervention intended to affect individual learning and behavior. ABA’s emphasis on functional assessment and positive behavioral support will help meet heightened standards of IDEA ‘97. Its emphasis on measurable goals and reliable data collection will substantiate the child’s progress in the event of due process.

In describing the evidence backed benefits of ABA the MADSEC Report noted that:

There is a wealth of validated and peer-reviewed studies supporting the efficacy of ABA methods to improve and sustain socially significant behaviors in every domain, in individuals with autism. Importantly, results reported include “meaningful” outcomes such as increased social skills, communication skills academic performance, and overall cognitive functioning. These reflect clinically-significant quality of life improvements. While studies varied as to the
magnitude of gains, all have demonstrated long term retention of gains made.

Other major contributions of ABA to the education and treatment of individuals with autism include:

• a large number of empirically-based systematic instruction methods that lead to the acquisition of skills, and to the decrease/elimination of aberrant behaviors;

• a technology for systematically evaluating the efficacy of interventions intended to affect individual learning and behavior; and

• substantial cost/benefit.

Over 30 years of rigorous research and peer review of applied behavior analysis’ effectiveness for individuals with autism demonstrate ABA has been objectively substantiated as effective based upon the scope and quality of science. Professionals considering applied behavior analysis should portray the method as objectively substantiated as effective. Methods of applied behavior analysis should be considered to evaluate the effectiveness of any intervention used to help individuals with autism. Researchers should continue to vigorously investigate behavioral intervention as the most promising area of research and treatment benefiting individuals with autism known today. Early interventionists should leverage early autism diagnosis with

The American Academy of Pediatrics Management of Children with Autism Spectrum Disorders (2007) report described the level of evidence of ABA effectiveness in a manner that no other treatment mentioned in the report even remotely approximated:

Applied Behavior Analysis

Applied behavior analysis (ABA) is the process of applying interventions that are based on the principles of learning derived from experimental psychology research to systematically change behavior and to demonstrate that the interventions used are responsible for the observable improvement in behavior. ABA methods are used to increase and maintain desirable adaptive behaviors, reduce interfering maladaptive behaviors or narrow the conditions under which they occur, teach new skills, and generalize behaviors to new environments or situations. ABA focuses on the reliable measurement and objective evaluation of observable behavior within relevant settings including the home, school, and community.

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–40

To these reviews of studies supporting ABA effectiveness in treating autism can be added the US Surgeon General and the NY State Department of Health. Now the Fein study on autism recovery would add to the information basis of such reports.

We are decades past the point where About.com Autism can claim that all autism interventions are created equal as long as they are positive and done early and intensively. There is no evidence to support the About.com position. The About.com Autism position is in essence a rejection of an evidence based approach to assessing autism interventions.

autism

Get Political! Autism Advocacy in Canada and the Marley Message

The British Columbia election is now history and former trial lawyer, political pro, community activist and autism advocate David O Marley was unable to upset powerful Liberal incumbent Ralph Sultan, an engineer and former bank executive, who doubled the votes of all other candidates combined in the riding of West Vancouver-Capilano.

In victory Mr Sultan singled out Marley as someone he had worried about in this election as reported on bclocalnews.com:

At the outset of the campaign, Marley represented a strong contender and possible threat, said Sultan. "He (Marley) was a very experienced backroom political pro."

Marley the political pro had expected incumbent Ralph Sultan to win but emphasized the value of public political participation:

"I'd like to see more people running as independents ... the (political) parties have been hollowed out. People don't see the value of participating (in politics). MLA's are basically reduced to salespeople for their parties."

This parent of an autistic child is sensitive to Marley's message. The legal process from Auton to Deskin-Wynberg did not achieve anything directly for autistic children. But those cases were fuel for powerful autism advocacy movements in many Canadian provinces. We may not all choose to run as Independents in party dominated Canadian politics. This is one autism Dad who has not gone that route (and would probably get a serious shellacking if I did). BUT we have to participate, we have to play hard and smart in the political arena to influence those who do run and get elected.

In the Auton case the Supreme Court of Canada delivered a clear message. Beyond the overly refined legal analysis of the decision (the SCC essentially held that Canadians enjoy no independent, substantive Constitutional right to necessary medical treatment) it is clear that our Canadian Constitution, our Charter of Rights, our courts will be of little assistance in obtaining autism specific treatment, education and residential care for our autistic loved ones. The lesson from Auton was that parents have to get political to help their autistic children live as decent, full and meaningful a life as they can.

Find out what your party candidates and representatives in your ridings, federal and provincial are saying, or not saying, about autism issues and try to influence them, try to push them in the right direction. Use the media, letters to the editor, YouTube and the Internet. Use what is available to influence the political process for autistic children and adults.

Get political!

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Community Activist and Autism Advocate David Marley: One Heck of a Scrapper

I have no vote in today's British Columbia election. I do not pretend to know the area, other than what I have heard from my BC friends. I am certain though that if I had a vote today I would vote for fiscally responsible community activist and autism advocate David O. Marley who is running as an independent in West Vancouver-Capilano.

(Photo left: David Marley in Oakville, Ontario campaigning for Medicare for Autism NOW!)


David's official bio and agenda are on the internet at Vote4Marley. If you read the material at that site you will learn that David Marley has an impressive background in politics and law. You will learn that he is a fiscally responsible community activist who has fought for many community causes. Amongst those causes you will learn that David O. Marley is, and has been, a dedicated, capable and persistent autism advocate ... which is how I came to meet DOM, as he often signs off on his emails.

(Photo left: David Marley in Halifax, Nova Scotia speaking as part of the FEAT BC goes coastal national autism campaign)

What an official bio and agenda can never truly convey on the printed page is the real essence of a person, the real character of an individual, that can only become known from direct interaction. Anecdotal evidence is the weakest form of evidence in assessing causes and treatments for disorders such as autism disorders. It is the absolute highest form of evidence though when it comes to assessing the character of an individual. It is not truly possible to know people from afar, from media interviews and public accounts. You have to meet someone, look them in the eye, see how they respond to difficult and challenging situations.

I met David Marley in Halifax when he spoke as part of the FEAT BC Goes Coastal tour to push for a real national autism strategy. I also met him in Toronto and Oakville as part of the last pre-election tour by the Medicare for Autism Now team which graciously invited me to participate. I have exchanged emails and phone calls with David Marley. I have debated strategies and tactics for advancing a national autism strategy with him. David has a terrific background as a political organizer and as a lawyer and he shows real personal commitment to his causes - like autism. He has a sharp quick mind, a storehouse of political knowledge and many other assets. He is a true Independent who would represent his constituents ferociously.

If the people of West Vancouver-Capilano are looking for something other than the same old tired party politicians to represent them they should vote for David O. Marley - a real independent. I have met and worked on my cause - autism - with David. It is a real battle to get anything moving on the National front for autism. But David has been fighting tirelessly for that very end and having met and worked with him in that battle I can truly say that if the West Vancouver-Capilano want a real independent who will truly represent their interests they should vote Independent TODAY, they should vote for David Marley. If they do they will be electing one heck of a scrapper to fight on their behalf.

autism

Further Notes On Alan Griswold's Bizarre Autism Rant

I have to admit I was very startled reading Alan Griswold's bizarre rant about the Deborah Fein study being a "fictitious study" and the intervention involved not being ABA (yeah right 40 hours a week of intensive early behavioral intervention and it wasn't really ABA?) .

I also found it odd that AG would single me out for fame and misfortune in his blog post. (rant). His fellow Neurodiversity blogger Kristina Chew at the Change.org's Neurodiversity page, and with whom I usually disagree, concurred with my interpretation of the word "study" (it means "study" Alan) and IEBI as being ABA:

An ongoing study involving children on the autism spectrum aged nine to 18 is finding that "the range for children recovering from autism is 10 percent to 20 percent." As reported in yesterday's Telegraph, University of Connecticut psychology professor Deborah Fein is studying the effects of intensive behavior therapy---Applied Behavior Analysis (ABA)---on children on the spectrum. The study is still in its preliminary stages and is funded by the NIMH:

Of course Ms Chew supports the Neurodiversity ideology Mr Griswold subscribes to so she wasn't on the receiving end of the AG rant. Where I have never drunk from the ND Kool-Aid I was singled out for Mr. G's weird little outburst.

I wonder if Alan Griswold is capable of admitting his errors?

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Fein's Autism Study: Alan Griswold's Bizarre Commentary

Anti-ABA blogger Alan Griswold appears to have consumed too much coffee, before publishing his comment "Harold Doherty's Fictitious ABA Study". In his silly rant, Mr Griswold contends that the study was fictitious, that there is no ongoing study, etc. He claims that I took some words about what he calls a non-existent study out of context from a Washington Post article.

Here is what I said about the study itself in my comment Autism Recovery: More Evidence of ABA Effectiveness :

a study was presented at an autism conference by University of Connecticut psychology professor Deborah Fein showing recovery of between 10 and 20% of subjects originally diagnosed as autistic who were later determined to have lost the autism diagnosis after years of intensive applied behavioral analysis.

The full WP article, in fact makes several references to a study conducted by Professor Fein:

She presented research this week at an autism conference in Chicago that included 20 children who, according to rigorous analysis, got a correct diagnosis but years later were no longer considered autistic ... The study, funded by the National Institute of Mental Health, involves children ages 9 to 18.

...

The children in Fein's study, which is still ongoing, were diagnosed by an autism specialist before age 5 but no longer meet diagnostic criteria for autism. The initial diagnoses were verified through early medical records.

The WP article also indicates clearly that children recovered after years of intensive behavioral therapy. If the study pertained to an intensive behavioral therapy other than ABA I don't know what that would be and Mr. Griswold does not identify any such therapy.

I am not sure if Mr. Griswold actually read the WP article or not but it clearly indicates that Ms Fein conducted a study as I indicated and contrary to Mr. Griswold's strange commentary.

Despite his tortured interpretation of the WP article the whole point was that it demonstrated, recovery from autism, which in the real world outsdie of Mr. Griswold's blog, is a measure of the effectiveness of the intervention.

Mr. Griswold also mocks the 10-20% results but glosses over the fact that the 10-20% figure refers to full recovery, children assessed as autistic who no longer met the criteria for an autism diagnosis after years of behavioral intervention. The WP article does not state that the other children did not benefit from ABA. It was silent as to whether the children who did not lose their diagnosis acquired benefits short of full recovery.

I did not state that the study as reported was a comparative study with any other interventions. What I did do was refer again to the AAP 2007 comments which appear on the sidebar of this blog and which I repeat again:

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4

American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders, 2007

File Alan Griswold's blog under B in your blog lists, B for bizarre. But leave room. Any time a study, report, article, analysis or commentary suggests that some children can recover from autism those who have made a fetish out of the neurological disorder will start buzzing hysterically. Griswold's is only one of many such rants' to come.

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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.

autism

Saturday Morning With Conor And Life Is Good

It was another beautiful Saturday morning yesterday. Time for Conor and Dad to hit the trail.







autism

Autism Recovery: More Evidence of ABA Effectiveness

It has been a very bad week for the anti-ABA, anti-autism treatment crowd.

Laurent Mottron, Morton Ann Gernsbacher and Michelle Dawson, amongst others, are probably not happy with the latest autism research news out of Chicago where a study was presented at an autism conference by University of Connecticut psychology professor Deborah Fein showing recovery of between 10 and 20% of subjects originally diagnosed as autistic who were later determined to have lost the autism diagnosis after years of intensive applied behavioral analysis.

The recovery story itself is not knew. The highly respected Dr. Doreen Granpeesheh and other researchers and clinical psychologists, who actually work with autistic children, have presented stories of autistic children who have recovered after years of ABA treatment. What is most significant in this instance is the rigour of the analysis which resulted in the initial autism diagnosis and the thorough documentation involved in the study as reported in the Washington Post:

Autism researcher Geraldine Dawson, chief science officer of the advocacy group Autism Speaks, called Fein's research a breakthrough.

"Even though a number of us out in the clinical field have seen kids who appear to recover," it has never been documented as thoroughly as Fein's work, Dawson said.

Previous studies have suggested between 3 percent and 25 percent of autistic kids recover. Fein says her studies have shown the range is 10 percent to 20 percent.

But even after lots of therapy _ often carefully designed educational and social activities with rewards _ most autistic children remain autistic.

Recovery is "not a realistic expectation for the majority of kids," but parents should know it can happen, Fein said.

Fein is being responsible in cautioning that recovery will not happen for most children with autism who receive ABA. But that does not mean that it is an all or nothing proposition either. Gains in reducing problem behaviors as in self injurious behavior and aggression, and skill acquisition with ABA use are well documented as noted in the American Academy of Pediatrics Management of Children with Autism Spectrum Disorders report (2007):

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4

ABA for autism. The evidence of ABA effectiveness in treating autism has grown over the past decade despite the ideological obstinacy of those who condemn ABA. This week that evidence grew yet again.

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Autism Advocate Ruby Dhalla

Brampton-Sprindgale Liberal MP Ruby Dhalla is facing a serious threat to her political career. She has been accused of mistreating caregivers formerly employed by her brother. She claims that the accusations are nonsense and are part of a political consipiracy against her. As a lawyer, and as a Canadian citizen I believe that the caregivers' allegations AND Ms Dhalla's response should be carefully and responsibly investigated. Above all Ms Dhalla must not be prejudged in the media.

I have no idea how this will turn out but I hope that the allegations are found, after careful, responsble investigation, to be without merit. I admit that I do so selfishly because of Ms Dhalla's strong support for autistic children in Canada.

Unlike the Conservative Party's Mike Lake, himself an autism dad who recognizes the benefits of ABA for autistic children, but works against efforts to ensure that all autistic children receive such benefits , Ruby Dhalla has spoken eloquently, and with conviction, in support of a real National Autism Strategy that would benefit all of Canada's autistic children as she did in the House of Commons on October 27, 2006:

House of Commons Debates

VOLUME 141 l NUMBER 071 l 1st SESSION l 39th PARLIAMENT

OFFICIAL REPORT (HANSARD) Friday, October 27, 2006 Autism Spectrum Disorder (1415)

Ms. Ruby Dhalla (Brampton—Springdale, Lib.): Mr. Speaker, as my colleague just mentioned, there is tremendous support for the creation of a national autism strategy, not only from members of the House but from many Canadians and families who have been affected by autism.

We must all join together in commending the students from Fredericton who actually did a tremendous amount of work in showing that they are activists for a very important cause.

We also must commend the dedication of many other colleagues in the House, including the member for Fredericton, the member for Sackville—Eastern Shore and the member for Dartmouth—Cole Harbour, as well as Senator Trenholme Counsell. We must commend them for their hard work and their commitment to ensuring that we in this country develop a national strategy to address the issue of autism.

We must look at it and make sure that the national strategy is going to ensure that children in this country who are affected by autism receive the type of treatment and therapy they need to ensure they have the highest quality of life possible, because many of us know that autism spectrum disorder is a very complex developmental disability, one that affects brain function.

People with autism typically have an inability to talk and understand or communicate with others. They have an inability to form social relationships, to make eye contact, perhaps to recognize dangerous situations, as my colleague who spoke before me mentioned, an inability to adapt to changes in the environment or their routine, and perhaps an inability to learn skills and language naturally, as typically developing children do.

Autism spectrum disorder is currently reaching epidemic levels. If we look 10 years back, statistics show that almost one in every 10,000 children was diagnosed with autism. However, in 2006 the statistics are quite shocking. One in 166 children is diagnosed with autism.

As the member of Parliament for Brampton—Springdale, I have had the opportunity to meet with a number of parents and families with autistic children who live in my constituency. Hearing their stories is absolutely heart-wrenching. As was described earlier, many families who have autistic children, not only in my riding but across the country in many of the other provinces and territories, are actually having to mortgage their homes, sell their homes or give up their jobs to ensure that their children get the very best in treatment. Treatment costs have been estimated at almost $70,000 per year.

We know there is effective treatment. I think that those of us in this House have a responsibility to ensure that the children who need that treatment actually get it. We must make these investments in their early childhood learning. We must ensure that they have the foundation to enable them to go out there and succeed.

Innovative research has shown us some effective treatment, such as intensive behavioural intervention, and there is also applied behaviour analysis, which actually breaks down into much more manageable steps many of the tasks these children face. Each newly achieved or mastered task then serves as a building block for these children to build on for future skills. These children are actually assisted or prompted, as some suggest, through this extremely positive therapeutic process.

Right now in most provinces, intensive behavioural intervention and applied behaviour analysis are actually funded for preschool children. However, treatment depends on where one lives in the country. In some provinces, the treatment is funded until the age of six. As was mentioned earlier, in Alberta it is funded until the age of 18.

We must make sure that regardless of where one lives in Canada, whether it is on the west coast, the east coast or in the Northwest Territories, all children who are affected by autism actually have the opportunity to receive the treatment they need throughout their lives until the age of 18.

I am sure this national strategy is going to ensure that we have the proper investment to do further research into whether there are other treatment options available and into how this type of condition can be prevented. We must invest in a comprehensive strategy to address this very complex disorder. (1420)

As I have mentioned, we know the cost is upwards of $70,000 per year, but we have to ensure we give the opportunity to these families so their children can obtain treatment and provide them with the quality of life they need. These families should be able to do this without having to mortgage their homes, or sell their cars, or go through those financial hardships. Many families that have been affected by autism simply cannot afford this treatment.

In April 2005 Justice Frances Kiteley of the Ontario Superior Court of Justice ruled that the absence of treatment for ABA meant that children with autism were excluded from the opportunity to access learning with the consequential deprivation of skills. The likelihood of this type of isolation from our society would result in the loss of the ability for these young children to exercise their rights and freedoms to which Canadians are entitled.

Over the past 30 years, thousands of research documents have been published and have been peer-reviewed. These studies show that if these children receive the treatment they so much deserve, they will have a chance for purposeful and productive lives.

Many other constituents have come forward and have even sent out emails. I received another email just a few weeks back from a women in Manitoba. She talked about the fact that both of her sons were autistic. She described the hardship of having to sell her home to ensure that her children would get the type of care and treatment they needed. Today, her children are at the mercy of the school system because there is no legislation in Manitoba to ensure that these children receive the applied behaviour analysis treatment or the intensive behaviour intervention.

We all know that these children deserve better. They deserve the opportunity to go out there and learn. They deserve the opportunity to go out, become productive citizens and contribute to our social, economic and political fabric within our country. As a health care provider, I know the types of treatments these children receive have a very positive effect, not only for the families but also for those vulnerable children. All members and all parties of the House have the opportunity to really make a difference for these families and these children. We have an opportunity to support a national autism strategy, which would make a tremendous difference in the lives of thousands of Canadians.

On behalf of our party, as the critic for health, we wholeheartedly support a national autism strategy. We commend the member of Parliament for Fredericton who has brought it forward. As was said earlier, this is a non-partisan issue that impacts thousands of families across the country. We need to have a strategy that will ensure we can further study this disorder, that we can have other effective treatment options come forward and that ensure those who require the care receive it.

On behalf of many members in my caucus of the Liberal Party, we fully and wholeheartedly support a creation of a national autism strategy for those thousands of young Canadians who are affected with autism. I hope we will have unanimous support in the House of Commons to adopt a national strategy on autism

I will not prejudge the outcome of this matter, either against, or in favor of, Ruby Dhalla. I do hope though that a serious investigation finds no wrongdoing on her part. Canada's autistic children need strong advocates like Ruby Dhalla, MP for Brampton-Springdale.

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Autism Rising in California: 1200% Increase In Autistic Disorder Cases 1987-2007

San Jose's Mercury News.com reports that a new California state study released this week shows a 12 fold or 1200% increase in classic autism, or Autistic Disorder, cases over a 20 year period. The state's general population grew by only 27% during that same period.


From 1987 to 2007, the number of people with autism receiving services at state-funded regional centers increased by nearly 1,200%, jumping from 2,701 to 34,656, according to a study by the state Department of Developmental Services.


....


In addition, the study focused on people with classic autism and generally excluded people with other autistic spectrum disorders, such as Asperger's syndrome and Rett's disorder.

The expansion of the DSM in 1994 to include several disorders including Aspergers Disorder and PDD-NOS is usually used by the Autism Epidemic Deniers to support their belief that changes are purely social resulting from the expanded definitions, greater services availability, greater awareness and diagnostic substitution. The focus on classic Autistic Disorder in the California is powerful evidence rebutting that argument.

The study also reports that mental retardation also grew by 95% during that time period, greater than the general population. That figue helps put to rest the argument that diagnostic substitution explains a substantial part of the increase in autism diagnoses.

Autism is rising.

Autism is rising in California.

If past performance repeats the Autism Epidemic Deniers will not be persuaded by the new California evidence.

No evidence will shake the faith of the Autism Epidemic Deniers.

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Vaccine-Autism War: Discover Does Disingenuous

In its June online edition Discover does anything but discover, opting instead for disingenuous, when it asks Why Does the Vaccine/Autism Controversy Live On? There is is little need to read the entire article. The title question is immediate answered in the sub-title Research has soundly disproved the alleged connection, yet fears about vaccines continue to be a major risk to public health.

The article correctly points out the health and safety benefits that vaccines have brought to the general public as a whole. It even, to its credit, acknowledges that vulnerable subsets of the general population might have contracted autism from vaccines:

Kirby says—and even some vaccine defenders agree—that some small subgroup of children might have a particular vulnerability to vaccines and yet be missed by epidemiological studies. But the two sides disagree as to the possible size of that group. “If one or two or three children every year are getting autism from vaccines, you would never pick that up,” Offit says.

Despite that acknowledgement the Discover article, while focusing on Kirby, Robert F. Kennedy and Jenny McCarthy makes no mention of Dr. Healy, Dr. Gerberding ( who also said more studies of unvaccinated children should be done to explore the autism issue) , Dr. Duane Alexander an NIH agency head who has said more studies could be done, or Dr. Jon Poling, a neurologist and father of an autistic child who was successful in obtaining a settlement for his daughters vaccine induced autism, a condition hidden under euphemisms in official statements.

In discussing the vaccine court decisions it is telling that the settlements arising out of vaccine induced autism claims are not mentioned in the article. The names Poling and Banks, in particular are no where to be seen. The article mentions the Times of London allegations against Dr. Wakefield mentioning that he denies the allegations but not mentioning that he has published a detailed response online and is fighting the allegations in professional proceedings that have gone on for so long. Nor doe the Discover article mention that the role of the Times of London and journalist Brian Deer are now under scrutiny.

The Discover article mentions the IOM without mentioning, as was pointed out by Dr. Bernadine Healy, that the IOM in its 2004 report on vaccine safety, expressly discouraged the type of research that could have provided more reliable conclusions about vaccines and autism. While repeating ad nauseum the standard defences of vaccines Discover asks why the vaccine autism controversy continues?

The IACC appears to have at least acknowledged that the way to rebuild trust is to do the research that Dr. Healy, Dr. Gerberding and Dr. Alexandre have all stated or acknowledged could and should be done. It has called for some vaccine autism research in its strategic plan for Autism Spectrum Disorders Research:

To address public concerns regarding a possible vaccine/ASD link, it will be important over the next year for the IACC to engage the National Vaccine Advisory Committee (NVAC) in mutually informative dialogues. The NVAC is a Federal advisory committee chartered to advise and make recommendations regarding the National Vaccine Program. Communication between the IACC and NVAC will permit each group to be informed by the expertise of the other, enhance coordination and foster more effective use of research resources on topics of mutual interest. Examples of such topics include: studies of the possible role of vaccines, vaccine components, and multiple vaccine administration in ASD causation and severity through a variety of approaches; and assessing the feasibility and design of an epidemiological study to determine whether health outcomes, including ASD, differ among populations with vaccinated, unvaccinated, and alternatively vaccinated groups.

Discover's attacks on Jenny McCarthy, promoting vaccine defenders from Offit to Peet as heroic and demonizing parents who continue to ask questions, is simply more of the same insanity described by Einstein - repeating the same action over and over again and getting the same result but hoping for a different result the next time.

Discover does disingenuous and does a disservice to the public and all sides involved in this very serious debate with this article.

Discover should discover candor and sincerity and follow the lead of the IACC, Dr. Bernadine Healy, Dr. Julie Gerberding and Dr. Duane Alexandre.

Discover should let the research be done without further acrimony inducing rhetoric.

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Repressive Autism Advocacy: ASAN Does Not Represent Other People's Autistic Children

ASAN, the "Autism" Self Advocacy Network, is more than just a network for high functioning persons with PDD's or Autism Spectrum Disorders. It goes beyond simply representing the interests of its members and insists on challenging the rights of other persons, usually children, to receive representation of their interests through their parents and other caregivers. It attacks on a continual basis organizations like Autism Speaks, as it does in this latest press release, for attempting to help persons, primarily children, with Autism Spectrum Disorders recover from, or be cured of, their neurological disorder.

Autism Spectrum Disorders is the term commonly used today to describe the category of various neurological disorders listed as Pervasive Developmental Disorders in the DSM-IV, the Diagnostic and Statistical Manual of the American Psychiatric Association. The expression contains one word which is often used by ASAN, sometimes questionably, autism. I say questionably because some of the leading lights of the ASAN organization have Aspergers Disorder, a similar but distinct, disorder from that of Autistic Disorder from which the common usage borrows the term autism.

I also say questionably because some people with Aspergers Disorder or a high functioning variety of Autistic Disorder, actually purport to speak on behalf of all children and adults with Autistic Disorder, even though those persons, particularly children are usually represented, as is their right, by parents in the first instance, grandparents and other family members or state caregivers. ASAN actually goes so far as to attack organizations such as Autism Speaks which comprises many parents and family members of autsitic chldren precisely because they seek to overcome their own children's neurological disorders.

ASAN has the right to speak on behalf of its members and to tell the world that its members do not want to be cured. They have no right to oppose the treatment or cure of autistic children in the care of their parents or other caregivers. Under the United Nations Declaration of the Rights of the Child a child has the right to available treatment for their medical conditions. The UN Declaration of the Child, 1958, expressly recognizes that the child will be represented in the first instance by his or her parents. Not by a stranger somewhere else in the world who shares the same or a similar medical diagnosis. Apart from the lack of a legal right the high functioning autistic and Aspergergian persons who comprise ASAN lack a common shared reality with many of the people who they falsely claim to represenet. They have no legal, informed or moral right to advocate on behalf of Conor Doherty or the other children of other people with whom they have little in common.

In attacking Autism Speaks, and parents and parent organizations seeking to treat or cure autistic children, ASAN is overreaching and attempting to suppress the rights of autistic children, the right to treatment and cure of their neurological disorders and their right to be represented by their parents.

In doing so ASAN betrays itself as a repressive organization.

It is time ASAN stopped pretending to represent other people's children.

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Autistic Adult Care Improvements Long Overdue in New Brunswick

I have said often on this blog that I am very happy with the progress that has been made here in New Brunswick in addressing the needs for evidence based autism treatment and in ensuring that autistic children receive a real, quality education. There are still problems that have to be addressed concerning preschool interventions for and education of autistic children but the distance we have traveled in the six years since then Health Minister Elvy Robichaud announced in the New Brunswick legislature that the government was committing funds specifically to autism is remarkable. That progress has, for the most part though, been confined to autistic children. New Brunswick's adults with autism disorders are badly in need of improvements to the barely existent residential care system for autistic adults.

Despite the substantial, and increasing, numbers of autistic adults and the complexity of the challenges they face New Brunswick does not have a residential care system dedicated specifically to adults. New Brunswick adults with autism who require residential care currently live in group homes with persons with other challenges. The problem with a general residential care system is that the staff working in such places will not generally have autism specific training. Nor are the locations necessarily appropriate for persons with autism disorders.

The good will of New Brunswick's political leadership, from either of the two parties that have governed, is no longer a matter of debate in the mind of this autism dad. The path to progress began under the Conservative government of Premier Bernard Lord and has taken some major leaps forward under the Liberal government of Premier Shawn Graham. It would be dishonest for me not to acknowledge what both leaders and their parties have done for New Brunswick's autistic children. Far from slamming these leaders and their parties I personally thank them for what they have done to help our children with autism spectrum disorders.

The story is different though when it comes to New Brunswick's autistic adults where all aspects of autistic life have been largely neglected or mishandled. While there are many pressing needs at the adult level the fact is we have long been in desperate need of an autism specific residential care system with properly trained personnel. Such a system would require autism specific residences in each region of the province with autism trained staff.

There is also a need for a central adult autism treatment and residential care facility in Fredericton. That need is proven by the fact that New Brunswick has sent its more severely affected autistic youths and adults to facilities outside the province including to Maine in the United States. We currently have autistic adults living in the psychiatric facility in Campbellton. I know of at least one instance in Saint John where an autistic adult was living on a hospital ward. In the past an autistic youth, charged with no crime, convicted of no crime, was housed on the grounds of a youth correctional facility in Miramichi while awaiting a spot at the Maine facility.

The talent reservoir for the establishment of an adult care centre already exists in Fredericton which is centrally located providing relatively convenient access compared to more remote locations. The Stan Cassidy Centre which provides pediatric tertiary care services is located in Fredericton on the grounds of the Chalmers Hospital. The main campus of the University of New Brunswick and its excellent, community involved, psychology centre is located in Fredericton. The UNB-CEL Autism Intervention Training program is located in Fredericton and has already indicated that it foresees no problem in developing a training program for adult care workers. All of these resources could be drawn on to supplement and support a modern, secure community based and autism specific residential care and treatment facility.

New Brunswick needs a publicly operated, not for profit, community based residential care system for autistic adults with facilities in each region and a central facility in Fredericton capable of providing in house residential care and treatment for the more severely autistic adults for whom the group homes have already been proven not to be a solution. The political leadership of this province has shown a conscience, substantial good will, and determination in helping autistic children. The time to help autistic adults is overdue though ... long overdue.

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• 

Early ABA Autism Intervention Makes Dollars and Sense

The title of this comment is a modification of the Dr. William Frea article Early autism intervention makes dollars and sense on dailybreeze.com.

I modified the title for my comment for the simple reason that in the subject article Dr. Frea is talking about the individual child benefits and societal costs savings arising from early ABA intervention. Every parent is free to choose who they wish to consult with respect to their choice, if any, of intervention for their autistic child. If anyone is wondering why they might want to consider Dr. Frea's recommendations they should know that he is chief clinical officer and co-founder of Autism Spectrum Therapies, an agency providing autism services throughout Southern California, and has served on the California State Legislative Blue Ribbon Commission on Autism. In other words he has the education, experience and expertise to know what he is talking about.

Another reason to listen to Dr. Frea is that he bases his recommendations on an evidence based approach to assessing autism interventions and their merits. An evidence based approach uses the best available scientific and empirical evidence to assess the effectiveness of a treatment or intervention. This avoids reliance on non-scientific anecdotal evidence and reliance on a near impossible standard that may never be met during the lifetime of your autistic child. It also avoids ideologically motivated anti-autism treatment rhetoric as the basis for trying to help your autistic child.

Dr. Frea reviews the results of autistic children who receive early ABA and the cost savings to society that result. He urges California policy makers to fund, or require funding of, evidence based autism therapies. In this context he summarizes nicely the current position of ABA as an autism treatment:

We all hope researchers will soon discover the cause of the autism epidemic and how to prevent it. In the meantime, we need to deal with both today's reality and tomorrow's prognosis, as these children move on through middle school, high school and transition to adulthood and careers. The best investment that we can make today is early intervention with scientifically validated ABA therapy.

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Vaccine-Autism War: Japanese Mouse Study Supports Biological Plausiblility of Thimerosal Autism Association

The abstract of a Japanese (Minami T, Miyata E, Sakamoto Y, Yamazaki H, Ichida S, Department of Life Sciences, School of Science & Engineering, Kinki University, Osaka), study of mice injected with low levels of thimerosal published in Cell Biology and Toxicology, April 2009, indicates that the study results "help to support the possible biological plausibility for how low-dose exposure to mercury from thimerosal-containing vaccines may be associated with autism".

The authors reported the presence of Metallothionein (MT) proteins, which are inducible, in the cerebellums of the mice in correlation with the thimerosal injections. They reason that the cerebelllum is thimerosal senstitive and the presence of the MT proteins after injection of thimerosal combined with the brain pathology of patients observed with autism helps support the possible biological plausibility of a thimerosal/mercury and autism association.

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Autism Advocacy? Anti-ABA Activist Michelle Dawson at the Supreme Court of Canada

Elizabeth Svoboda, like Erin Anderssen before her, has received criticism from Michelle Dawson, for daring to characterize her activities in ways that Ms Dawson, an outspoken public figure, does not approve of. Her letter reacting to the Svoboda article about the Neurodiversity movement in Salon.com contains a number of points of disagreement including her role as a crusader and, in particular, her role before the Supreme Court of Canada in Auton where she intervened as an "autistic" a person with an unspecified Autism Spectrum Disorder.

I actually agree with Ms Dawson that it is inaccurate to state that she personally:

"convinced the Canadian Supreme Court to overturn an appeal that would have provided state funding for ABA therapy."

Apart from the Appellant British Columbia government a number of provincial governments intervened seeking to have the Supreme Court of Canada reverse the lower court orders directing the BC governement to fund Early Intensive Behavioral Intervention (ABA). The Supreme Court of Canada agreed with the various governments' arguments which were essentially based on the premise that it was the role of legislatures, not the courts, to decide what treatments should be considered medically necessary for what disorders. According to the governments' submissions the absence of evidence that the autistic children involved in the case had been discriminated against with respect to the provision of services determined by the legislature to be medically necessary the Courts erred in intervening under the equality and non-discrimination provisions of the Charter of Rights and Freedoms to order funding of EIBI (ABA) for autistic children.

While I agree that Ms Dawson's role in Auton was probably not determinative, I do agree with Ms Svoboda that Ms Dawson is, and has been, a "crusader" or activist. Ms. Svoboda refers to her as an "autistic-rights" crusader. Ms Dawson was in fact before the Supreme Court of Canada, not just to "provide information to the court that it did not already have" as she claims in her letter to Ms Svoboda. In Auton Michelle Dawson was there as an anti-ABA activist opposing ABA for autistic children. In that proceeding she opposed the parents' request that the SCC uphold the lower courts' Orders directing the BC government to fund EIBI (ABA) for autistic children.

In Auton, The Orders of the Supreme Court of British Columbia and of the British Columbia Court of Appeal directed the BC government to fund early intensive behavioural therapy for children with autism or autism spectrum disorder. Failure to do so constituted a breach of the childrens' rights under s. 15(1) of the Charter. Ms Dawson, in the interveners factum filed on her behalf, and available online, expressly opposed the request of the autism parents involved to uphold those orders by asking the SCC to reject the premise of those Orders which were the findings by the lower courts that the refusal by the BC government to fund EIBI (ABA) treatment for autism infringed s. 15(1) of the Charter:

80.
The following orders are requested:

That the Respondents’ request to uphold the British Columbia Court of Appeal finding of an infringement of s.15(1) in the particular circumstances of this case be denied.

In the argument portion of her factum Ms Dawson takes issue with the science demonstrating the effectivness of ABA. She clearly opposed ABA in the proceedings on that basis contrary to the views of credible agencies which had reviewed the scientific literature on the effectiveness of ABA and contrary to the expert witnesses in the case, including the BC government's expert witness. She also opposed ABA on the grounds that, in her not so humble opinion, the practice of ABA was unethical because it could extinguish autistic behaviors and because "autistics' were not involved in the practice.

Ms Dawson had also expressly stated her opposition to ABA in the Notice of Application filed on her behalf in which she sought leave to intervene in the Auton proceedings:

5. The applicant is concerned that the judgments of the court below appear to endorse the principle that a particular type of treatment (Applied Behaviour Analysis) constitutes a medically necessary treatment for autistic individuals such that the failure of parents to provide that treatment or the failure of autistic individuals to seek that treatment could constitute a deprivation of basic medically necessary principles;

The Supreme Court of Canada summarized Michelle Dawson's position in Auton succinctly in paragraph 5 of that Court's decision:

"While increasingly accepted, Applied Behavioural Analysis (“ABA”) or Intensive Behavioural Intervention (“IBI”) therapy is not uncontroversial. Objections range from its reliance in its early years on crude and arguably painful stimuli, to its goal of changing the child’s mind and personality. Indeed one of the interveners in this appeal, herself an autistic person, argues against the therapy."

Ms Dawson, like anyone, can reasonably disagree on subjects of public interest. It is not reasonable though for her to contend that she has not been a "crusader" or activist. She has been very active in a number of forums offering her view of what it means to be an "autistic". She has publicly opposed ABA treatment for autistic children on what she considers to be scientific and ethical grounds before the Supreme Court of Canada and the Canadian Senate.

Michelle Dawson may prefer now to be known solely as a researcher but she has been, and remains, an activist with her own ideological, and sometimes political, agenda. That agenda is one which includes opposition to ABA treatment of other people's autistic children notwithstanding the desires of the childrens parents that they receive such treatment and notwithstanding the opinions of a number of credible authorities that ABA is solidly evidence based and supported in its effectiveness at reducing self injurious behaviors in autistic children and helping them to acquire specific intellectual, social and communication skills.

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A New Brunswick Autism Dad's Open Letter to Dr. Susan Bryson re Nova Scotia's Immoral Autism Lottery

May 1, 2009

Dr. Susan Bryson, PhD
Joan and Jack Craig Chair in Autism Research
Pediatrics, Dalhousie University


Dear Dr. Bryson

I am writing you this open letter (also posted on my blog site Facing Autism in New Brunswick) to express my concerns about Nova Scotia's lottery system of autism service delivery a system which, in my respectful opinion, is immoral. I do not believe that something of such importance to the life and well being of a child with a serious neurological disorder should depend upon a system of chance. I do not believe that such a system can be rationalized in a country like Canada which recognizes the desirability of a universal, publicly funded approach to health care. I do not believe that Nova Scotia's lottery system of provision of autism service delivery is consistent with principles expounded in several versions of the United Nations Declaration of the Rights of the Child.

As a lawyer I am also doubtful that the lottery system would survive a challenge under the Charter, notwithstanding the Auton decision, given that, unlike in Auton, the Nova Scotia government has agreed to provide some autistic children with autism specific ABA services and given the further empirical and professional support for ABA since the Auton decision, including the 2007 review by the American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders. I ask that you, with your internationally recognized autism expertise and your acceptance by government authorities in Canada, including provincial governments and the federal CIHR, speak out publicly against the lottery system of autism service delivery in Nova Scotia.

As you are undoubtedly aware, those Nova Scotian families whose autistic children lose out on the Nova Scotia Autism Lottery, and who have the means to do so, leave Nova Scotia in search of services elsewhere. In one well known instance, a husband and wife in that situation, both medical professionals, left Nova Scotia for Manitoba for the autism services available at the St. Amant facility in Manitoba. For famiiles of lesser means whose autistic children do not win the autism lottery .. well .. with your background and expertise you know what awaits them.

I am the father of a 13 year old boy diagnosed with Autistic Disorder and assessed with profound developmental delays and I have been a parent autism advocate here in New Brunswick since my son's initial diagnosis at age 2, a relatively early age of diagnosis 11 years ago. I also have very strong family ties in Nova Scotia where I was born and where my parents and siblings, cousins, nephews and nieces live, including an autistic child in my extended family. I also have friends in Nova Scotia's autism community including Jim Young of FEAT NS who has been a relentless and outstanding advocate for autistic children and adults in Nova Scotia. I am concerned for autistic children and their families who must be subjected to the Nova Scotia autism lottery.

I am also deeply concerned for a more immediate reason. I am concerned that the Nova Scotia lottery model which, on its face, reflects greater concerns for budgetary considerations than for the best interests of autistic children, might influence developments elsewhere in the Maritimes and particularly here in New Brunswick. As an autism advocate here in New Brunswick I can say from personal experience that our autism advocacy community had to overcome many obstacles to develop an autism service delivery model at both the pre-school and school levels that is as good as any that I am aware of in Canada or the United States. And it took time to develop the model we now enjoy.

In 2001, after an Interdepartmental Committee Review (Education, Health, Family Services), the New Brunswick government committed to the principle of provision of evidence based autism interventions. Most autism services are now provided by Autism Support Workers, Clinical Supervisors, Teacher Assistants and Resource Teachers trained at the University of New Brunswick College of Extended Learning.

The UNB-CEL AIT program has been subjected to external review by Dr. Eric Larsson who has commented about the program as follows:

"The current AITP is a remarkable and thorough program that has been developed to an exceptional level of quality in the context of limited resources. The province-wide model is one that many other provinces should adopt, as it carries with it many cost-effective features. The curriculum content requires little modification".

In addition to Dr. Larsson's external review the New Brunswick autism service delivery model has been the subject of presentations by key local professional and administrative personnel at national and international conferences. Dr. Paul McDonnell a clinical psychologist and Professor of Psychology (Emeritus) from UNB has been instrumental in educating New Brunswick parents and in providing clinical autism services to autistic children. He made a presentation on the New Brunswick Autism Service delivery model at the ABA International Symposium, Chicago, May 123-28, 2008. Anne Higgins, Director Professional Development Division, College of Extended Learning, University of New Brunswick, made a presentation on the NB model at the CAUCE (Canadian Association for University Continuing Education) Conference 2008 at the University of Western Ontario.

The pre-school autism interventions are provided by the Autism Support Workers and Clinical Supervisors at several agencies situated around the province. AITP trained Teacher Assistants provide daily intervention and educational assistance to autistic children in neighborhood schools across New Brunswick. The system is not perfect. More work needs to be done but I can tell you as an autism advocate with ties across Canada that some people have actually moved to, or are considering moving to, New Brunswick to seek autism services not available in their home province, including some from Nova Scotia. I have visited Ontario as part of a national autism advocacy campaign last year and I am well aware through the personal friendships that I have developed there, and through my blogging activities and contacts, that Ontario despite its relatively greater wealth, is not even close to New Brunswick in provision of pre-school or school autism services.

In addition to a serious effort by the current government of Premier Shawn Graham and Education Minister Kelly Lamrock to provide autism training to Teacher Assistants and Resource Teachers our schools have also begun to accommodate ABA based education for autistic children in our schools in a variety of settings. Some autistic children, for whom that environment is suitable, are educated for the most part in the mainstream classroom. Others, including my son Conor who is severely autistic, are educated in a small separate room, at our request, where he is not overstimulated and overwhelmed by the mainstream classroom environment. Conor visits common areas of the school for specific periods for limited periods of time with a TA who is UNB-CEL trained and who pays close attention to my son's reaction to his environment and ability to function in different locations. In terms of peer acceptance I can say through personal observation taking him to and from school that that my son has been very well received by other children in the grade school and middle school he has attended in our neighborhood even though his time with them is for brief periods during class time or in common areas of the school.

Apart from these regular pre-school and school services New Brunswick also has an autism specific pediatric tertiary care team at the Stan Cassidy Centre for Rehabilitation in Fredericton. At one time the autism team at the Stan Cassidy was scheduled for closure .... because the overwhelming demand for its services was perceived as a threat to the continued viability of the Stan Cassidy's overall operation. Community and government response to that initial closure decision was such that the decision was reversed. The autism component of the Stan Cassidy team has been rebuilt and now includes a next generation of professional leadership including Dr. Tara Kennedy who has quickly become immersed in, and a very important part of, New Brunswick's autism service delivery model.

These autism services in New Brunswick have been largely built since 2003-2004 while next door Nova Scotia, starting from a similar vantage point, today offers a lottery system of early intervention with little in the way of systemic provision of autism services in schools across Nova Scotia. Here in New Brunswick we had a determined parental autism advocacy community driving much of what has been accomplished. We also had responsive government and political leadership.

Vitally important to what has been achieved though has been the direct and sustained involvement of New Brunswick's academic and professional autism community in helping parent advocates understand what is required, from an evidence based perspective, to help our autistic children. The same people have been engaged in helping government work through and understand the importance of evidence based approaches to autism service delivery. The public involvement of our academics and professionals has been key to what has been achieved in New Brunswick.

I ask you to speak out publicly against the immoral autism lottery system in Nova Scotia. Your expertise, and government trust in you, would surely mean that your views would be given considerable weight by public decision makers. Nova Scotia's autistic children would surely benefit from your public advocacy.

You could consider recommending to the Nova Scotia government that it replace its immoral autism lottery with the more just, equitable, evidence based and province wide model developed here in New Brunswick and recommended by Dr. Eric Larsson.

Respectfully,


Harold L Doherty
Fredericton New Brunswick

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