Experienced Clinical Child Psychologist On Increases in Autism Diagnoses, Importance of ABA Treatment

From the Medicare for Autism Now! web site:

Dr. Glen Davies is a clinical child psychologist who has practiced in the Vancouver area for over 25 years. Today, over two-thirds of the children seen in his clinic are on the autism spectrum. In his 16 minute interview, Dr. Davies comments upon the dramatic increase in autism diagnosis over the last two decades. He discusses the transformational impact of ABA treatment, as well as the relative costs of not providing treatment – to autistic children, their families and society at large.

Dr. Davies is a clinical psychologist with actual experience working with children with autism. There are lots of purely academic, research psychologists working solely with abstractions and epidemiological statistics. It is important to listen to  experienced clinical psychologists like Dr. Davies, psychologists who understand the realities and challenges of autism disorders and the best known way to address those challenges ... ABA treatment.

Autism Research Community's Failing Grades: Vocational Interventions Research

"In the end, the researchers found only five studies that focused on vocational interventions. While this handful of studies looked at certain on-the-job programs designed to support young adults with autism and suggest these "interventions" can improve quality of life and reduce symptoms of autism, the study authors concluded, "all studies were of poor quality." They say these studies had serious flaws including the randomization or comparison groups, which makes it difficult to draw any conclusions. Lack of follow-up and the fact that most studies were small also contributed to the researchers' deeming the quality of the research as poor. The study was published Monday in the medical journal Pediatrics. 

Geraldine Dawson, chief science officer for the advocacy group Autism Speaks, says she finds it remarkable that only five studies that address vocation skills were published in the last three decades and all were of poor quality. "There is a tremendous knowledge gap regarding how to help young people with autism be successful in the work environment," Dawson says."

Evidence weak that vocational programs help young adults with autism, CNN, August 28, 2012

This information does not indicate that vocational interventions are not effective. What it indicates is that the autism research community has not bothered to conduct any serious research to evaluate those interventions. The autism research community has its obsessions and it pursues them doggedly even when the results don't support their particular obsessions. But those obsessions do not necessarily result in quality autism research. 

We all know that within the next couple of years the "Mottron group" will publish more studies telling us how autism is just a different, in some ways superior, type of intelligence, one that can not, and should not, be cured. There will be more studies about the genetic bases of autism without ever pinpointing specific genes or genetic groupings that explain the diverse types of autism disorders as they manifest in so many individuals. The environmental side of the autism equation will be ignored. No new treatments or cures will be explored. 

The autism research community has done little to advance our understanding of what autism disorders are, how they are caused, how to treat or cure autism disorders or even, since Lovaas, how to assess or evalute interventions. The review of vocational autism research is just one more failing grade for the autism community that puts up lots of posters and makes grand speeches at IMFAR conventions in hotels around the world but really does little to help the lives of those who actually suffer from autism disorders. 

I realize how pessimistic this comment is. My son was diagnosed 14 years ago at age 2. I have seen many hopes raised and false starts made but I have seen little lasting progress in the past 14 years. Instead of progress we have a new definition of autism disorders scheduled to arrive in the DSM5 that will do nothing to improve the lives of those with autism and will not advance diagnosis, treatment or cure for autism disorders. The world autism research community has been talking in circles since my son was diagnosed studiously avoiding the tough research issues but achieving nothing. 

Yes my comment is pessimistic. I would love to be wrong about this. I would love to see some substantial breakthrough in understanding autism, how it is caused, how to ameliorate its challenges for my son and others, breakthroughs in treatments and cures. I do believe that progress must be achieved through research but as my son grows older I do not see the qualitative results, beyond the work of Lovaas and those who followed his lead, of any such research to date. Perhaps a review like this will help those at the IACC and other autism research leaders face some autism reality and improve the direction and quality of autism research.

Guilty! Autism Blame from Cold Moms to Old Dads

Breaking Science News: Guilty! Old Dads convicted of causing children's autism disorders, all charges dropped against environmental toxins!

Once upon a time the medical community accepted without critical analysis the speculation that aloof, cold "refrigerator" moms caused their children's autism disorders. Eventually that so called theory was exposed as a medical establishment fraud, a very harmful one.  In recent years the old dads theory has gained ground and it is the old sperm of dads, including this dad, that is responsible.  The recent "study" which purports to "link" older dads to the autism of their children is the attack du jour on autism parents who MUST be blamed for what has happened to our children. The medical establishment, still at war with McCarthy, Wakefield and parents who observe regression in their children immediately after vaccinations is giddy and giggling with glee over the opportunity to once again blame parents, Dads' turn this time,  for their children's autism disorders.  

None of the environmental toxins to which our children, and we, are exposed in utero, or in our air, water, toys, jewelry, living room window blinds, foods, gasoline, house paint, pharmaceuticals, vaccines or vaccine ingredients including those administered to pregnant women will be considered. Corporate profits will be immunized from the disorder known as Irrational Autism Parents Disease.  Even more funds can be diverted from environmental autism research into "genetic" autism research no matter how genetics is defined at the time.  Many parents do not trust the researchers and medical authorities who accept any piece of speculation as long as fault for autism can be laid at the feet of parents.  And all the smart people of the medical establishment will wonder why many of those same parents do not and will not trust them.

12 Years Later: Environmental Causes of Autism Still Unexplored

"The Environment as an etiologic factor in autism: a new direction for research"  by EA London was published online by ehp, Environmental Health Perspectives, in 2000. Today, 12 years later, it remains the direction not taken as "autism research" continues down the road of genetic obsession and largely ignores environmental autism research.

Although public health authorities have paid lip service to the idea that autism appears to result from gene environment interaction funding has been overwhelmingly directed towards the gene side of the equation. The people who are much smarter than most of us, who understand things we can not possibly understand, who do not need our input as unwashed, unthinking parents of autistic children simply keep on keepin' on with their religious like belief that autism is primarily genetic.  Following is the abstract and the suggestion for new lines of investigation into environmental exposures which the US IACC, the Canadian Institutes for Health Research and other agencies involved with setting directions for autism research do not appear to have accepted. Of course the genetic obsession research has brought us a better understanding of autism causes .... hasn't it?

Abstract

Autism is one of a group of developmental disorders that have devastating lifelong effects on its victims. Despite the severity of the disease and the fact that it is relatively common (15 in 10,000), there is still little understanding of its etiology. Although believed to be highly genetic, no abnormal genes have been found. Recent findings in autism and in related disorders point to the possibility that the disease is caused by a gene-environment interaction. Epidemiologic studies indicate that the number of cases of autism is increasing dramatically each year. It is not clear whether this is due to a real increase in the disease or whether this is an artifact of ascertainment. A new theory regarding the etiology of autism suggests that it may be a disease of very early fetal development (approximately day 20-24 of gestation). This theory has initiated new lines of investigation into developmental genes. Environmental exposures during pregnancy could cause or contribute to autism based on the neurobiology of these genes.

Autism Reality Check: Where Are The IACC Results?

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

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

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

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

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

Hall's Harbour Fun for Conor and Family

Autism, severe autism, brings many challenges on a regular basis for those affected, including family members. Today was a day though when Conor was at his very best, when his autism challenges were in check.

Conor, his brother Brandon, Mom and Dad, all enjoyed the fresh air at Hall's Harbour, Nova Scotia. Conor loved the opportunity to throw rocks into the Bay of Fundy and to show Tom Brady that his days as the greatest quarterback ever (in the opinion of Conor and his Dad) may be nearing an end as he tossed rock after rock with ease. 

After exploring a bit we went  to the Hall's Harbour Lobster Pound where we  all relaxed and enjoyed the great food.  A terrific family outing!

Australian Familiy's Harsh Autism Reality

The mainstream media, the blogosphere and Twitter are full of dreamy commentaries  telling the world that autism is not really a disorder, it is a beautiful culture, a different way of  thinking that is helping make the world a better place.  Meanwhile parents of severely autistic children around the world know better as illustrated by this Australian family's story  in the Fraser Coast Chronicle's The harsh reality of autism:

Christian's autism means he will probably never experience the beauty of friendships, will never feel the bonding love of a partner. His autism is so severe it keeps him from speaking. He has never said "I love you mum". And probably never will. He still wears a nappy, and might do for the rest of his life. He barely sleeps, eats only Vegemite scraped on white bread or salt and vinegar chips, and drinks only apple juice from a baby's bottle. One interesting aspect of his condition are his compulsive needs. He has a set of toy cars that are always assembled in the same order and in a straight line on the kitchen table. His brother sometimes messes them up to torment him. But brothers are like that. 

Christian's condition demands routine and even then the smallest thing can lead to a "meltdown". He will bang his head on floors, against walls, whatever is near. The thing about a meltdown is they can happen anywhere - in a shopping centre, in the car on the way out the driveway, they can even happen at school. "You can't stop them," Tracey says. "They can last all day."

1 Year Limit On ABA Treatment for Autism Forces Mother to Leave Nova Scotia for Alberta

A Nova Scotia mother with an autistic son is planning to "go out to Alberta" where ABA autism treatment services are not, as in Nova Scotia, limited to one year.  Does Canada need Medicare for Autism NOW?  No question about it.  Nova Scotia, for those who don't know, is also the province which became notorious for distributing ABA services for autism on a lottery basis. 

I was born in Nova Scotia's Annapolis Valley and return  periodically to visit family. It is a beautiful province with some wonderful people but it's government has not made proper treatment of autistic children a significant priority.  Canada needs Medicare for Autism Now so that more families with autistic children are not forced to leave provinces like Nova Scotia or New Brunswick which is now, under the Alward government,  effectively dismantling many of its autism services.

Barry Hudson: Ontario and Canada Are Failing Our Autistic Children and Adults

Barry Hudson is  a very well informed, articulate father of an autistic son in Ontario, autism advocate and director with Medicare for Autism Now! Barry describes his family life with autism and the impact of autism on family life.  He describes waiting lists and other obstacles that the Ontario bureaucracy uses to prevent children with autism from receiving autism services.  Children with autism who are not considered severe enough do not receive treatment. Children with autism who are considered too severe do not receive treatment.  A child with autism who clears these hurdles will have treatment services discontinued if they do not pass periodic improvement tests.  

Barry also provides an informed articulate history and criticism of Canada's failure to provide a national health care scheme to cover autistic children in Canada, a failure made more pronounced by the fact that some other countries have identified autism as national priorities and put programs in place to provide treatment.  

Severe Autism Parenting Reality: An Old Fear Returns

Conor walking with Dad this morning. I often let him walk a  

distance ahead of me so he can make decisions and demonstrate his 

knowledge of routes and how to get home on his own if necessary.

Today an old fear returned and grabbed me firmly.  It was the greatest fear I have known in my life.  And it came back with full force. 

I have written a couple of times on this site about the time several years ago, when Conor was much younger, and he left the house unnoticed while he was in my sole  care.  When I realized he was missing I ran around the house, down to the Saint John River which was close to our home, across a nearby busy parking lot and then back home before calling 911. The 911 operator told me he had been taken into a nearby convenience store by a good Frederictonian who had stopped his vehicle to remove Conor from traffic to safety.  The man left as soon as I arrived and identified myself and he new Conor was safe. He left without waiting to be thanked. 

Today, years later, I was again the adult in charge and I was again distracted by a business call.  When the call was ended and I looked for Conor I realized he had again left unnoticed.  I ran outdoors around our house calling his name without spotting him,  then ran back upstairs to speak with his brother who had been busy in his room and hadn't heard him go out. When I ran down the stairs Conor stepped into the house and I was again relieved.  I believe he had just been in the back yard starting to leave via a shortcut to one or our regular walking paths and heard me calling for him. 

Conor is no longer a small child physically but he has serious cognitive challenges and severe autism disorder. When we go on our almost daily walks I will often let him walk ahead of me, within eyesight, to let him make the decisions about the direction to go to find our way home.  I have done so in the hope that if he does leave unnoticed he will know his way back which I believe he does. For that reason I  was not as fearful, or not quite as fearful, when  I couldn't find him quickly today.  I admit it though.  I was scared again.  And thankful when Conor returned to the house. Very thankful.

Great Autism News in New Brunswick!

Great autism news in New Brunswick as the UNB-CEL Autism Intervention Training Program is being made available for the public.  (Applications available online.) The college program has previously been recommended by US autism experts Dr. Eric Larsson and Dr. David Celiberti. Dr. Celiberti in particular is very familiar with the program and had recommended the New Brunswick autism service delivery model which was based on the program  for consideration by other Canadian provinces.  Unfortunately for New Brunswick's autistic children, students and adults the successful UNB-CEL Autism Training Program, first utilized by the Premier Bernard Lord's Conservative government, and then by Liberal Premier Shawn Graham's government, has been abandoned by the David Alward government and its non evidence based, philosophically driven partners at the NBACL. 

The UNB-CEL Autism Intervention Training program was born in response to requests for tenders for autism training put out by the Lord government. That request resulted from intense and effective advocacy by many New Brunswick parents of autistic children led by the Autism Society of New Brunswick.  The actual program itself was first conceived at a meeting of a committee which was  meeting to establish an autism centre of excellence at UNB in Fredericton.  During a committee meeting a parent advocate member of the committee suggested that UNB should provide training in response to the government tenders. Dr. Paul McDonnell who was at the meeting confirmed that UNB had the professional resources to provide the training.  Anne Higgins, then with UNB-CEL, laid out a step by step process, including necessary time lines, that could be followed to meet the tender requirements. A pilot program was run and the UNB-CEL Autism Intervention Training was born!

Parent advocates, including yours truly, lobbied strenuously for the extension of the UNB training to our schools.  We met fierce opposition from some in the Department of Education who had their own agendas to pursue.  I was even subjected to threats from Department of Justice legal counsel, at the request of the then Director of Student Services, Robert Gerard, to keep me from participating in meetings between the Autism Society and Education department officials to discuss implementation of a commitment by Premier Shawn Graham to increase the numbers of UNB-CEL autism trained education assistants working with autistic students. 

We also met with fierce opposition from the New Brunswick Association for Community Living which included direct opposition from NBACL icon, then NB Human Rights chair, and now Alward transition team member Gordon Porter.  The current Education Minister's wife Krista Carr is an executive officer with NBACL and at the time she also opposed the Autism Society's position that alternative learning environments were necessary for some autistic students and in particular for those receiving ABA based instruction, provided by UNB-CEL autism trained aides, in quieter settings outside the regular classroom.  Danny Soucy is a current member of the Alward government, also affiliated with NBACL, and was also a  public opponent of Autism Society efforts to achieve the flexible inclusion necessary for many autistic children to be educated at all and in particular to receive ABA instruction from UNB-CEL Autism trained aides.

A third force opposing parents advocating for UNB-CEL training for our children was, and is, the union representing education aides, CUPE Local 2745 and its leader Sandy Harding. During the time I was ASNB President I had requested a meeting with Ms. Harding's predecessor to seek the CUPE Local 2745 support for autism trained education aides (TA's).  Ms Harding's predecessor was not interested and she herself upon taking office as Local 2745 president has been openly hostile to any serious training requirement for aides working with autistic students.  

CUPE Local 2745 has used its considerable clout to resist any training requirement and pushed hard for seniority as the only requirement for aides working with children with autistic disorders. As a labour lawyer with a quarter of a century experience, in New Brunswick and federally, I can say that such a lop sided approach to any job posting requirement is almost unheard of and, as the Alward government currently genuflects before CUPE Local 2745, constitutes an abandonment of management rights. Removal of the UNB autism training requirement in favor of pure seniority considerations and refusal to permit learning outside the classroom when necessary also constitute failure to accommodate the autistic disorders, the neurological based disabilities of children with autism contrary to Human Rights Act requirements.   Both the Alward government and CUPE Local 2745 are now discriminating against children with autism disorders by refusing to acknowledge the need for autism training for aides working with children with autism disorders which are in fact serious neurological disorders.

With these three major institutional forces aligned in lock step opposition to the accommodation of New Brunswick's autistic students comes a fourth factor - the current shaky state of the world economy. Economic factors currently provide perfect cover for the Alward government to abandon the quality and integrity of the UNB-CEL autism training for the sloppy in house training that was opposed by the Autism Society New Brunswick and for a surrender of our children's best interests in the face of the adult interests of untrained senior members of CUPE Local 2745.

In this perfect storm the revival for the public of the UNB-CEL Autism Intervention training program, and the quality and integrity it provides, is one bright light in the darkness.  It  is a beacon to guide us and provide hope that better days are ahead.

Rethinking Autism: One Disorder or Many?

The following reviews and book description are from  Amazon and provide a glimpse into Rethinking Autism: Variation and Complexity by Lynn Waterhouse a book scheduled for release by Amazon on October 15, 2012.

Rethinking Autism promises to be a paradigm shattering approach to understanding what is now commonly called Autism Spectrum Disorder.  With the APA's DSM-5 committee about to jam the existing recognized pervasive developmental disorders into one spectrum Lynn Waterhouse's book looks like it may present a very timely challenge to the  thinking of the American Psychiatric Association's DSM-5 team:

"A seminal book forcing a much-needed change in the way in which we think about autism.  Impressively well-researched and well-argued.  A 'must-read' for all autism researchers."

--Prof. Jill Boucher, City University, London, UK

"For too long, clinicians and researchers have treated autism as a distinct syndrome. Waterhouse challenges this view with a scholarly review of evidence. Yes, there are children with pervasive developmental difficulties, but no, they are not a homogenous group - either in terms of symptoms, or underlying causes."

--Prof. Dorothy Bishop, University of Oxford, UK, Review of Rethinking Autism Lynn Waterhouse, Amazon.ca 

Book Description

The media, scientific researchers, and the Diagnostic and Statistical Manual all refer to "autism" as if it were a single disorder or a single disorder over a spectrum. However, autism is unlike any single disorder in a variety of ways. No single brain deficit is found to cause it, no single drug is found to affect it, and no single cause or cure has been found despite tremendous research efforts to find same.Rethinking Autism reviews the scientific research on causes, symptomology, course, and treatment done to date.and draws the potentially shocking conclusion that "autism" does not exist as a single disorder. The conglomeration of symptoms exists, but like fever, those symptoms aren't a disease in themselves, but rather a result of some other cause(s). Only by ceasing to think of autism as a single disorder can we ever advance research to more accurately parse why these symptoms occur and what the different and varied causes may be. 

- Autism is a massive worldwide problem with increasing prevalence rates, now thought to be as high as 1 in 38 children (Korea) and 1 in 100 children (CDC- US) 

- Autism is the 3rd most common developmental disability; 400,000 people in the United States alone have autism 

-Autism affects the entire brain, including communication, social behavior, and reasoning and is lifelong 

- There is no known cause and no cure 

-Funding for autism research quadrupled from 1995 to 2000 up to $45 million, and the Interagency Autism Coordinating Committee has recommended $1 billion funding from 2010-2015

I admit that, as the father of a 16 year old son with severe Autistic Disorder and profound developmental delays, I am predisposed towards Ms Waterhouse's approach to understanding autism disorders even though it does in itself appear to be based purely on genetic models of autism. As a father who has advocated for evidence based autism services in Canada I am no fan of the very high functioning autistics who oppose parents whose sole aim is to help their own disabled severely autistic children. I do not see the very high functioning autistic self advocates who purport to speak for all persons with autism disorders as sharing similar conditions or disorders with my severely autistic son. 

I have no illusions about whether Ms Waterhouse's perspective will be accepted  and I predict right now without hesitation that it will not be embraced by the academic, medical, pyschiatric and psychological communities that shape our understanding of autism or autism(s). Several years ago I was enthusiastic about what appeared to be a paradigm shift from the "it's gotta be genetic" view of autism causation to a gene-environment model.  It has happened to some extent but  authorities are still timid about embracing it and still funnel massive amounts of research dollars in support of  genetic research while neglecting to develop a strategic plan for researching environmental factors as recommended by a group of  researchers led by Philip Landrigan and by the efforts of Irva Hertz-Picciotto and her colleagues.

While Rethinking Autism emphasizes variation and complexity of autism disorders the DSM-5 has moved in the opposite direction to combine the various recognized pervasive developmental disorders into one Autism Spectrum Disorder which could more accurately be described as Asperger's Spectrum Disorder. A Twitter tweet by Dr. Jon Brock brought the impending Rethinking Autism book to my attention. After I made an online comment about the book I was alerted to an existing paper by Lynn Waterhouse, Autism Overflows: Increasing Prevalence and Proliferating Theories, which appears to set the stage for her forthcoming book.

I have only just read the Autism Overflows paper once and, as a humble autism dad, I do not pretend that my understanding of the paper is "complete".  Some elements of the paper seem very straightforward and readily digestible though and appear to me to run contrary to the DSM-5 direction:

"Forty-five years of autism research has not produced a reasonable or progressing standard causal theory of autism. The myriad of competing theories of autism, while supported by evidence are, nonetheless, ad hockery. As Happé et al. (2006) title proclaimed “It is time to start giving up on a single explanation for autism” (p. 1218). 

Conclusion: The Center Will Not Hold 

 Rather than continue to construct theories that try to explain all the variation in autism, there should be a paradigm shift accepting that all the phenotypic and genotypic variation in autism cannot be encompassed by any single theory. De facto, if autism is caused by such a myriad of neural and other systemic deficits in development, there must be phenotypic and genotypic subgroups that have not yet been discovered.

......

Judging from many specific findings like those of Kelley et al. (2008) and the review conclusions of Amaral et al. (2008), Nicolson and Szatmari (2003), and Stanfield et al. (2008), it is improbable that two or three phenotypes (Folstein, 2006; Happé et al. 2006) will be sufficient to accommodate the collocation of deficits now included in autism and ASD. This leaves the field in a definitional quandary: If there is no autism, how can populations with the current diagnostic deficits be defined? 

 The social explosion of awareness of autism and the increasing prevalence of autism create a strong social force against disbanding the diagnostic category. However, public pressure increases the need to generate productive and predictive models, and this cannot be done while research and theory remain focused on explaining autism as a monolith.

“The only genome-wide feature specific to humans so far detected is the acceleration of evolution of genes expressed in the brain” (p. 700). Given the thousands of brain-expressed genes and genes for brain development that influence aspects of social interaction skill and flexible behavior in changing contexts, and given findings to date for the genetic basis of autism (Grigorenko et al. 2008; Morrow et al. 2008; Zhao et al. 2007), it is not reasonable to assume that in the future a gene or set of genes will be found to provide a unifying causal explanation for autism. 

Autism research should start over with a new hard core assumption that autism consists of more subphenotypes and subgenotypes than we have yet been able to hypothesize. We could begin with a provisional list of as many deficits as have been discovered in association with autism. Work could then proceed, via non-statistical analysis of complete genotype and phenotype studies of individual variation, to form groups. Exploring individual variation patterns while resisting the pressure to identify every study finding as “the cause of autism” might help move the field toward a progressive and productive splintering of the monolith."