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.

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Happy Canada Day! Now Let's Start Addressing Canada's Autism Crisis

Happy Canada Day EVERYONE! 

Including Canadians With Autism Disorders!

I can not imagine living in any other country in the world.  As much as I love our great neighbors to the South, I would not want to live in any country except Canada. I do not pretend, however, that Canada is perfect, not at all. It is impossible for me as the father of a severely autistic son, now 16 years of age, to ignore the exclusion of autistic children and adults in Canada from coverage for treatment of their serious neurological disorders, their autism disorders, under our so called "universal" health care system.   

As much as I love my country I admire our American neighbors for the leadership they have shown in dealing realistically with autism disorders.  ABA was applied and developed in the US as an autism intervention by Dr. Lovaas and remains the only solidly evidence based effective intervention for autism disorders. ABA has been endorsed in a recent US federal court decision requiring Medicaid coverage of ABA for autism in Florida.  US federal government employees now have medical insurance coverage of ABA for autism. 

Meanwhile in Canada,  autistic persons remain excluded from Medicare coverage for ABA.  We held one sham, orchestrated, (ABA 4 autism advocates, including me, were excluded)  National Autism Symposium that produced no tangible results and no road map for future efforts to help Canada's autistic children, youth and adults. Canadian autistic children who are fortunate enough to receive ABA do so under a national patchwork of largely ineffective service delivery systems.  New Brunswick, once hailed as a leader in autism service delivery by US autism expert Dr. David Celiberti, is now regressing into "in house training" for early intervention and education assistants.  Living conditions for adults with autism are simple: those who are high functioning will be housed in a variety of locations including group homes with untrained staff, hospital wards and  rented hotel rooms.  Those who are severely autistic with intellectual disabilities will often live out their lives in psychiatric hospitals. 

In the US, where they are not asleep at the wheel, the CDC estimates that 1 in 88 have an autism spectrum disorder. It is now time for Canadians to wake up and start addressing our national autism crisis in an organized, concerted effort.  Let's start including Canada's autistic children and adults in our national agenda before the next Canada Day celebrations. 

I love you Canada. I hope you feel the same way about Canada's autistic children and adults ... and start showing it.

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TIME and the Autism Crisis

I have often written of the major mainstream media institutions  glossing over the harsher realities of autism disorders as experienced by those with severe Autistic Disorder.

One of my friends, a determined autism dad/advocate  from British Columbia, re-posted on Facebook an exception to this tendency and I thought it appropriate to mention again this realistic coverage of the challenges faced by a severely autistic adult. 

In  Growing Old With Autism TIME  published an article by Karl Taro Greenfeld about his brother  Noah Greenfeld, 42 when the article was originally published, in May 2009:

"Noah, my younger brother, does not talk. Nor can he dress himself, prepare a meal for himself or wipe himself. He is a 42-year-old man, balding, gaunt, angry and, literally, crazy. And having spent 15 years at the Fairview Developmental Center in Costa Mesa, Calif., a state facility, Noah has picked up the con's trick of lashing out before anyone could take a shot at him.

Noah's autism has been marked by "three identified high priority maladaptive behaviors that interfere with his adaptive programming. These include banging his head against solid surfaces, pinching himself and grabbing others," according to his 2004 California Department of Developmental Services individual program plan (IPP). Remarkably, that clinical language actually portrays Noah more favorably than the impression one would get from a face-to-face meeting. (See six tips for traveling with an autistic child.)

Despite the successful marketing of the affliction by activists and interest groups, autism is not a childhood condition. It is nondegenerative and nonterminal: the boys and girls grow up. For all the interventions and therapies and the restrictive diets and innovative treatments, the majority of very low-functioning autistics like Noah will require intensive support throughout their lives. If recent estimates of prevalence by the Centers for Disease Control and Prevention are accurate, then 1 in 150 of today's children is autistic. That means we are in for a vast number of adult autistics — most better adjusted than Noah, some as bad off — who will be a burden to parents, siblings and, eventually, society.

We are largely unprepared to deal with this crisis.  ..."

There are some who can flippantly ask ... autism crisis ... what crisis? Karl Taro Greenfeld is not one of them.  Nor am I as the father of a 14 year old  boy severely affected by his Autistic Disorder. In our house the Autism Crisis is very real and never out of mind.

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Autism Rising. Time to Face the Truth

The prevalence of ASD is rising in this country without a definitive understanding of why this is occurring. According to a December 2009 report of the Centers for Disease Control and Prevention (CDC), 1 in 110 children are diagnosed with Autism Spectrum Disorder (ASD), including 1 in 70 boys. That rate represents a 57 percent increase from the CDC’s report in 2007, which last reported that 1 in 150 children with a diagnosis of ASD.4 The CDC has not been able to attribute this increase to better, earlier and broader diagnosis of the disorder, concluding that it cannot “rule out” a true increase in the prevalence of ASD.

The economic implications of ASD on society are significant. According to a 2006 study by the Harvard School of Public Health, the direct and indirect costs of taking care of an individual with autism over a lifetime can be $3.2 million. Lost productivity and adult care contribute heavily to this estimate. The cost to society to care for all individuals with autism is estimated to be $35 billion each year.5

Division of Health Care Finance and Policy (DHCFP)Review and Evaluation of Proposed Legislation Entitled: An Act Relative to Insurance Coverage for Autism House Bill 3809 Provided for The Joint Committee on Financial Services March 2010       

I will leave it to those who glorify autism disorders to KWibble with the information provided by  both the DHCFP of the Commonwealth of Massachusetts and the CDC.  The conclusions reached concerning rising autism rates have been voiced many times by concerned parents and autism professionals but have been dismissed   Autism is a disorder, it is a serious disorder that impacts everyone in our society. It is time to ignore the autism is beautiful nonsense once and for all and push hard for real autism research, treatment, cure and services. Let's not let another decade go by without a serious effort to address the very real autism crisis that has been staring us in the face for so long.


It ain't just genetic. Time to face the truth, autism is rising and the crisis is real.

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Woe Canada: Can Do American Politicians Address Autism Crisis While Harper & Ignatieff Do & Say Nothing

In the 11 years since my son, Conor, was diagnosed with autism the rates of autism diagnoses have skyrocketed in numbers that can not be explained entirely by the definition changes for pervasive developmental disorders (autism spectrum disorders) in the DSM. In the United States several American political leaders are taking steps to address the autism crisis while in Canada, the Harper government passes a budget which spends big bucks everywhere but offers nothing, zilch, for autism. And his de facto governing partner Michael Ignatieff also remains silent on autism issues; demanding nothing for autism as part of his party's continued propping up of the Harper party.

President Obama's commitment to addressing autism issues is well known:

Autism

President Obama and Vice President Biden are committed to supporting Americans with Autism Spectrum Disorders (“ASD”), their families, and their communities. There are a few key elements to their support, which are as follows:

• First, President Obama and Vice President Biden support increased funding for autism research, treatment, screenings, public awareness, and support services. There must be research of the treatments for, and the causes of, ASD.
• Second, President Obama and Vice President Biden support improving life-long services for people with ASD for treatments, interventions and services for both children and adults with ASD.
• Third, President Obama and Vice President Biden support funding the Combating Autism Act and working with Congress, parents and ASD experts to determine how to further improve federal and state programs for ASD.
• Fourth, President Obama and Vice President Biden support universal screening of all infants and re-screening for all two-year-olds, the age at which some conditions, including ASD, begin to appear. These screenings will be safe and secure, and available for every American that wants them. Screening is essential so that disabilities can be identified early enough for those children and families to get the supports and services they need.

Recently governors Doyle of Wisconsin and Corzine of New Jersey have spoken forcefully in support of initiatives to help autistic people and their families:

Governor Doyle in the Wisconsin State of the State Address:

First, we can make sure kids with autism get the treatment they need. Private insurers should cover autism; the treatment has been proven effective, and families deserve the right to see their children improve.

Governor Cozine's efforts on behalf of autistic people in New Jersey were described in a February 3, 2009 editorial on NorthJersey.com:

SINCE New Jersey has the highest incidence of autism in the nation, it's only fitting that our state should be a leader in supporting families facing this devastating diagnosis. The earlier the disorder can be identified and the more services that are available, the more positive the outcome. That is why Governor Corzine has made autism a high priority and has started a series of initiatives that are at various stages of progress. His efforts will inevitably be affected by the economic crisis and the state's financial woes. But as The Record's Elise Young reported this week, some success is already evident. An expanded and invigorated Governor's Council for the Medical Research and Treatment of Autism has been set up, along with an Adults with Autism Task Force and a training program for police, firefighters and emergency medical technicians on how to respond to those with autism. Perhaps the most promising and potentially effective initiative is the "early intervention" plan, which will result in evaluation guidelines for doctors and other health professionals who treat infants and toddlers. Guidelines have already been drafted and may be ready by spring.

Meanwhile back in Canada there is no mention in budget documents or discussions by Prime Minister Harper or Opposition Leader Ignatieff of autism or any commitment of funds to address Canada's autism crisis.

Too bad about that autism stuff eh?

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The Adult Autism Crisis

In What Happens When They Grow Up, Newsweek, to its credit, focuses on the very real adult autism residential care crisis which exists in the United States (and in Canada). Newsweek is unable to provide any real solutions but hopefully the article will help focus the public discussion of autism on the very serious crisis confronting adults with autism disorders who can not care for themselves.

Not all "autistics" grow up to become researchers, Supreme Court of Canada litigants and college students, appear repeatedly on CNN with Dr. Gupta, or start "Autistic"rights movements. Some are more severely impaired, lacking basic communication skills and an understanding of the world and how to function in it.

Here in New Brunswick we have much to be proud of in terms of autism service delivery for autistic pre-schoolers and our schools are rapidly becoming a model second to none in North America for educating autistic students. But our autistic adult services are abysmal.

In New Brunswick our autistic adults in need of residential care are placed in privately operated group homes. The homes are not set up specifically for autistic adults and the staff are not trained to deal with autistic adults. The more severely autistic adults and older autistic youths in New Brunswick have been kept on the grounds of a correctional facility, on the ward of a general hospital, left with overwhelmed parents or exported to facilities elsewhere in Canada and the United States.

The adult autism crisis is not unique to New Brunswick but, unlike our services for preschool and school age autistic children, the adult care autism crisis here in New Brunswick is amongst the serious in North America. By literally exporting our autistic adults we are admitting that we have failed some of our most vulnerable New Brunswickers.

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Autism Hero Stefan Marinoiu's Hunger Strike For Autism Now

There are many ways parents and other concerned citizens can advocate for health, treatment, education and residential services for autistic children and adults. Some join organizations, hold awareness meetings with government, business and the public, write letters to the editor and so on. Stefan Marinoiu of Toronto, who I met a couple of weeks ago during the recent Medicare for Autism Campaign NOW! visit to Toronto and Oakville, goes much further. Stefan has put it all on the line advocating for autism. And he is doing it again, right now. Stefan began a hunger strike for autism on May 5 outside Queen's Park in Toronto.

This winter Stefan walked for 11 days, over more than 200 miles, from Toronto to Ottawa, in the middle of a tough Canadian winter, blizzards and all, in an effort to meet Alleged Health Minister Tony Clement to ask the Canadian government to do something to help autistic people in Canada. He was traveling on foot with no warm trailer to retire to at the end of the day or if things got rough. With his winter autism trek Stefan literally put his life on the line advocating for autism change. Stefan got a 15 minute meeting with Minister Clement who said very little of substance. While the alleged federal Health Minister was not moved by Stefan's efforts parents of autistic loved ones across Canada were very moved. It was a privilege for me to meet Stefan in Toronto and Oakville. He is a genuine and compassionate person and has a great family.

Stefan's daughter Lia has started a Facebook group HUNGERSTRIKE for AUTISM NOW on which you will find updates and information about Stefan's Hunger Strike for Autism Now. As Lia points out her father is a type-2 diabetic. His hunger strike again poses serious risks to Stefan's health. Stefan's willingness to put it on the line for autism is a reflection of his tremendous personal courage and his strong convictions. It also reflects his frustration with the lack of help for autistic people like his son, 15 year old Simon, as shown in this Toronto Sun video:

I hope that Stefan takes care of himself as he tries again to impress upon government and public decision makers the impact that autism is having on autistic persons and their families and the need to take serious action to address Canada's autism crisis.

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Autism Crisis In Scotland - Invisible Autistic Adults

In Scotland Lacks Autism Services I commented on an article on healthcarerepublic on July 6, 2007 and the lack of services for people with autism in Scotland. That article, Call to find autism early in Scotland, focused on guidelines published by the Scottish Intercollegiate Guidelines Network (SIGN) calling on doctors to look for signs of autism in children and adolescents, including problems with social interaction and play, speech and behaviours. The article also expressed the doubt of many professionals in Scotland that early diagnosis would make much difference because of the lack of autism services available in Scotland.

In Revealed: ‘invisible’ adults living with autism, the Sunday Herald today reports, on an impending report by the National Autistic Society, the lack of services for autistic adults in Scotland, their dependency on family members for support and the isolation in which many spend their lives:

"Issues in the report include limited access to diagnosis, with 56% of those surveyed saying they found it hard to get their condition recognised. One adult said: "The GP did nothing. She didn't see any point in diagnosis for an adult."

But even after diagnosis many say they do not get the support they need. One participant in the survey commented: "I have had little or no support ever - my mother has done everything."

...

Bill Welsh, president of the Edinburgh-based Autism Treatment Trust, said the plight of many adults with autism had been "swept under the carpet", yet one child in 100 in the UK was diagnosed with the condition and the cost to society for each autistic child was estimated at £4 million. He added: "A major social, health and financial problem is upon us and urgent action is required."

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Autism Rising in Alabama

WHNT.com, from Huntsville, Alabama, reports statistics from an Alabama state task force report which says that the number of children in Alabama's public schools diagnosed with autism has grown from 68 in 1990 to 849 in 2000 and to 2,297 in 2006. Those who accept, as an article of faith, that there are no environmental factors in the worldwide increases in autism will immediately point to the changes in the DSM diagnostic criteria and definition of autism, increased awareness, and families seeking access to services by seeking an autism diagnosis for their children, as the sole explanation for such an increase. Some of these arguments are undoubtedly valid explanations for explaining part of such increases.

The changes in definition of autism began primarily in 1994 with the DSM-IV the last major revision of the Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association. Some will argue that those changes did not have any impact for a couple of years afterward and that makes sense. But that argument does not explain the dramatic increase, the tripling of reported autism diagnoses in the Alabama report between 2000 and 2006. Here in New Brunswick Canada my son was first diagnosed with an autism disorder in 1998. The DSM changes were reflected in practice in this area at that time. By early 2000 there had been major reviews of Autism Disorders conducted in California, New York and Maine and by the office of the US Surgeon General. The definition changes and awareness arguments do not seem to offer much explanation for the nearly tripling of autism diagnoses amongst Alabama school children between 2000 and 2006.

Nor does the "parents pushing for autism diagnoses to obtain services for their children" argument, provide any assistance in explaining the Alabama increases between 2000 and 2006. The recent Alabama autism task force report recently reported that Alabama lacks the autism services offered by nearby states and across the United States.

The dramatic increase, the near tripling, of autism diagnoses amongst Autistic school children between 2000 and 2006 should raise serious questions about a possible environmental factors in contributing to such increases. Smug assumptions to the contrary are simply not based on evidence or sound reasoning.

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Autism Waiting Lists In Alberta

The disparity in funding for autism treatment in Canada has, in the past, led some families with autistic children to move to oil rich Alberta, which has substantial government funding available for autistic children. But the availability of better funding has not translated into better services in all cases as children are stuck on lengthy waiting lists awaiting assessment. In Situation critical for autistic children Nicki Thomas of Sun Media reports on the critical shortage of staff and funding threatening the futures of autistic children in Edmonton. Terri Duncan of Children's Autism Services of Edmonton indicates that there are staffing shortages everywhere in Alberta and children are waiting up to a year for assessment. That year is a critically important year lost for autistic children in need of treatment:

Duncan said if autism isn't detected and treated early on, disruptive behaviour - like hitting, kicking and biting - develop from an inability to communicate effectively.

"Those behaviours can make lives really difficult and hard to deal with," she said.

"We would be able to take a lot more children off the waiting list if we had more qualified, trained staff," Duncan said.

Many credible studies and reviews of professional literature have confirmed that early ABA intervention is critically important for achieving the best possible outcome for autistic children. Lengthy waiting lists for assessment deprive autistic children of a better future.

In New Brunswick many, including me, have thought that a medical doctor is the only professional who can diagnose autism disorders. I was informed though that Psychologists can also make the initial autism diagnosis.

New Brunswick, Alberta, or anywhere else in Canada, it would seem that an important step in addressing the autism crisis, a crisis which is very real for families of children with autism, is to take steps to educate GP's in diagnosing autism. The tools being made available now by the American Academy of Pediatrics and similar organizations should be used by all doctors and psychologists to ensure autistic children receive early ABA treatment during the important early years without time being squandered.

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Autism Speaks Tackles Autism Crisis in South Florida Mar 24 - 28

Donald Trump, Bob Wright, Suzanne Wright, Melania Trump
Photo: TOWN-CRIER Online

Autism Speaks is continuing to show outstanding leadership in tackling the Autism Crisis in the US and around the world. Co-founders Bob and Suzanne Wright have joined with Donald and Melania Trump, local parents and autism advocates in organizing a South Florida autism awareness and fundraising initiative to take place during the last week in March. Autism Speaks Week, March 24-30, will include a number of activities including a Television News Series on the autism crisis of escalating rates of autism diagnoses, March 24 to 28 on NBC stations in the area, an on-line auction, ING Direct Ride Now South Florida motorcycle ride, Saturday, March 29, a telethon and broadcast of 'Autism Every Day', and a concert for Autism Speaks, headlined by Lionel Ritchie, Sunday March 20.

As stated by Bob and Suzanne Wright in TOWN-CRIER Online:

“Autism is a national health crisis that is affecting families in every corner of this country, from Florida to Alaska,” Bob Wright said. “Autism Speaks Week will shine a spotlight on the struggles of South Florida families and inform people about what they can do to improve the lives of individuals with autism in their community.” “Our hope is that this series of events will increase the level of understanding and acceptance,” Suzanne Wright added. “The money we raise will help Autism Speaks fund autism research and support community organizations here in South Florida and across the United States that provide critical services to children and adults with autism.”

The ability of Autism Speaks to generate public awareness of autism, raise funds for autism research is amazing. And now Autism Speaks is turning its considerable abilities to assisting local autism support organizations. Not content to engage in endless peurile debates over the appropriate metaphors to use in describing autism or whether to say "autistic person" or "person with autism" Autism Speaks is actually doing something constructive, in a big way, in addressing the Autism Crisis.

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Canadian Autism Prevalence Rates Different Than US Rates?

In early February 2007 the Center for Disease Control, the CDC, publicly revised its autism estimated prevalence rate from 1 in 166 Americans to 1 in 150. In Canada the Canadian Institutes of Health Research, the CIHR, web site indicates on its autism page, Health Research: Key to improving outcomes for children with autism, that "Autism, or more appropriately autism spectrum disorders (ASDs), affects an estimated 6 of every 1000 Canadian children." The calculator program on your computer will tell you that 6 in 1000 is roughly 1 in 166, the old CDC figure.

Why the discrepancy between the CDC's estimated prevalence rate and the CIHR's estimated Canadian rate? There are a number of possible explanations:

1) Canada, for reasons that could be environmentally or genetically based, could actually have fewer persons with autism spectrum disorders than the United States.

2) The CIHR may simply be using the old CDC estimate, unaware that the CDC revised its estimates of autism prevalence almost one year ago.

3) The CIHR may be aware that the CDC has changed its estimate but disagrees with the new estimate.

4) The CIHR may be aware of the newer CDC estimate and may agree with it; but can't be bothered to update its autism website information.

I am going to go out on a limb and guess that the correct answer is .... 4) The CIHR can't be bothered to update its autism website information. That explanation would be consistent with the attitude of the CIHR's political masters, the Harper government, which can't be bothered making a serious effort to address Canada's autism crisis.

And this is the same CIHR which said that it wants to build ties in Canada's autism community and help disseminate autism information to those communities? Maybe those of us who are merely ignorant parents, whose shoes will never be asked to tread the carpets of the CIHR national autism symposiums, should weigh carefully the information that ultimately emerges from those secretive conventions.

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