Autism Reality

Rob Corrdry Doesn’t Buy the Autism Is Wonderful Spin

Rob Corddry of “The Daily Show isn’t buying the joy of autism spin that permeates the neurodiversity internet sites.

Actor-comedian Rob Corddry of “The Daily Show” fame, will host The Hollywood Reporter’s 36th annual Key Art Awards on June 15 at the Beverly Hilton. He recently revealed in his blog that his young nephew is diagnosed with Autism.

“My brother Nate and I went to Boston this weekend to host a benefit for local autistic children. We HATE autism. We hate everything about it. Everything. There is nothing good about autism,” says Corddry in his penned thoughts regarding the frightening affliction.

“Except for all of that math stuff. That’s pretty cool,” he quipped.

“My sister asked us to host the event because her son, our nephew, is autistic, and the kids at his school need a new playground. Their current one is full of cockroaches and fire ants,” Corddry wrote.

“Nate and I told our team of publicists to accept the invitation…we hate autism that much.”

Corddry uses his humor to make his point: The heaviness of having a loved one diagnosed with the neurological disorder can be processed just a bit easier with a dose of positive attitude and proactive stance to learn as much as you can to fight back.

“Nate and I were in for a huge surprise. Who knew that autistic kids were such big Daily Show fans?”

Corddry talks openly about his four-year-old, autistic nephew Owen: “We have some history. Ours has been a slightly rocky relationship. You see, a few years ago, my millionaire father died, leaving Owen his entire fortune and me an old convertible. So I kidnapped Owen and took him to Vegas where I put him to work counting cards,” Corddry jokes.

Corddry and his brother Nate were successful in raising needed funds. “Nate truly found a second calling that night, conducting an auction for autistic kids. He was auction-tastic. He was auctistic,” mused Corddry in his blog source/

Chances are, if you are reading this article, you know too well about Autism, a complex neurobiological disorder that typically lasts throughout a person’s lifetime.

Today, 1 in 150 individuals is diagnosed with autism, making it more common than pediatric cancer, diabetes, and AIDS combined.

It occurs in all racial, ethnic, and social groups and is four times more likely to strike boys than girls.

Autism hampers a person’s ability communicate and navigate social structure. It is also associated with rigid routines and repetitive, obsessive behaviors. is an excellent resource started by Suzanne and Bob Wright, whose grandson Christian was diagnosed with Autism.

Autism was first identified in 1943 by Dr. Leo Kanner of Johns Hopkins Hospital. At the same time, a German scientist, Dr. Hans Asperger, described a milder form of the disorder that is now known as Asperger Syndrome.

Pediatricians may initially dismiss signs of autism, thinking a child will “catch up,” and may advise parents to “wait and see.” New research shows that when parents suspect something is wrong with their child, they are usually correct.

If you have concerns about your child’s development, don’t wait: speak to your pediatrician about getting your child screened for autism.

June 1, 2007 Posted by | autism awareness, autism disorder, Key Art Awards, neurodiversity, Rob Corddry, The Daily Show | 1 Comment

Autism & ABA, For Conor It All Adds Up

I have commented previously about how ABA, Applied Behavior Analysis, has been such a positive and effective means of communicating with Conor, teaching him to communicate, teaching him to read, and controlling and reducing problem behavior, notwithstanding the challenges that remain. By problem behavior I mean self aggression and self injurious behavior as well as property damage and aggression to others. Another area of skill development for Conor has been math. Conor loves his numbers and he is learning and loves to demonstrate his math skills as shown in these pictures. The pictures on this comment show skills, including patience and task accomplishment, in addition to adding things up correctly, that would have been unimaginable prior to ABA. If parents with newly diagnosed children do not wish to believe the hundreds of studies documenting the effectiveness of ABA as an intervention for autistic children then take a look at these pictures. This is not a “robotic” child being forced to perform by an abusive methodology. This is my son relaxing on the holiday and enjoying a past time. If you think he has been been deprived of his personality because of exposure to ABA look at the pictures of my laughing joyous son on this blog site. He has an infectious personality and he has been loved by many therapists who have worked with him and other people who meet him in our daily lives.

Do not listen to the ideologues who oppose ABA and minimize the wealth of professional literature supporting its effectiveness. And do not listen to them when they say ABA deprives children of their personalities. There is no professional literature to support these allegations and the experiences of too many autistic children and their families say otherwise. Michelle Dawson, Laurent Mottron, Jim Sinclair and other anti-ABA ideologues do not speak for my son. He speaks for himself. And when it comes to ABA Conor can add it all up for himself as he does in these pictures. In his actions, in his exercise of skills he has learned, in his joyful demeanor, Conor speaks for himself and he puts the boot to these tired anti-ABA careerists.

May 21, 2007 Posted by | Applied Behavior Analysis, autism disorder, autism interventions, Conor Doherty, Jim Sinclair, Laurnet Mottron, Michelle Dawson, neurodiversity | 2 Comments

Wikipedia’s Misleading List of People on the Autism Spectrum

Wikipedia’s credibility has taken a big hit of late. See for example “Facts and friction: Wikipedia’s quest for credibility, By STEPHEN HUTCHEON – SMH | Tuesday, 24 April 2007″

One area that Wikipedia has not cleaned up in its attempts to address it’s credibility issues is a beauty entitled “List of people on the autism spectrum” The list is flat out misleading in that most of the names on the list are high functioning or Aspergers with only 4 entries listed for “people with severe autism”. Of the four names none are non-verbal low intelligence persons. You would never know from this Wikipedia entry that many autistic people have very severe intellectual and communication deficits. Everyone on the Wikipedia list is someone who can communicate extremely well. With one exception. The exception is a dead girl who died by her mother’s hand at the age of 3.

Wikipedia’s Misleading List of People on the Autism Spectrum:

People with unspecified forms of autism

Main article: Pervasive developmental disorder

The following people have been diagnosed as being somewhere on the autistic spectrum but the specific classification is unknown.

* Taylor Crowe, autism advocate and artist [1]
* Christopher Knowles, American poet [2]
* Katherine McCarron, autistic child murdered at the age of three by her mother, Karen McCarron. [3]
* Jason McElwain, high school basketball player [4]
* Michael Moon, adopted son of author Elizabeth Moon [5]
* Abubakar Tariq Nadama [6]
* Jasmine O’Neill, author of Through the Eyes of Aliens [7]
* Sue Rubin, subject of documentary Autism Is a World; Sue Rubin has no oral speech but does communicate with facilitated communication [8]
* Birger Sellin, author from Germany [9]
* Daniel Tammet, British autistic savant, believed to have Asperger Syndrome [10]

[edit] People with Asperger syndrome

Main article: Asperger syndrome

* Nikki Bacharach, daughter of composer Burt Bacharach and actress Angie Dickinson; committed suicide on January 4, 2007 [11]
* William Cottrell, student who was sentenced to eight years in jail for fire-bombing SUV dealerships [12]
* Luke Jackson, author of Freaks, Geeks and Asperger Syndrome: A User Guide to Adolescence [13]
* Craig Nicholls, frontman of the Australian garage rock band The Vines [14]
* Gary Numan, British singer and songwriter [15]
* Dawn Prince-Hughes, PhD, primate anthropologist, ethologist, and author of Songs for the Gorilla Nation [16]
* Judy Singer, Australian disability rights activist [17]
* Vernon L. Smith, Nobel Laureate in Economics [18]
* Satoshi Tajiri, creator and designer of Pocket Monsters/Pokémon [19]
* Liane Holliday Willey, author of Pretending to be Normal, Asperger Syndrome in the Family [20]

[edit] People with high-functioning autism

Main article: high-functioning autism

* Michelle Dawson, autism researcher and autism rights activist who has made ethical challenges to Applied Behavior Analysis [21]
* Temple Grandin, a designer of humane food animal handling systems. [22]
* Hikari Oe, Japanese composer [23]
* Bhumi Jensen, Thai prince, grandson of King Bhumibol Adulyadej of Thailand; killed by drowning in the tsunami caused by the 2004 Indian Ocean earthquake [24]
* Dylan Scott Pierce, wildlife illustrator [25]
* Jim Sinclair, autism rights activist [26]
* Donna Williams, Australian author of Nobody Nowhere and Somebody Somewhere; after testing for deafness from infancy until late childhood, and labeled psychotic and ‘disturbed’, Donna was formally diagnosed as autistic in her 20s with an IQ score under 80 (not technically in the HFA range) in spite of achieving a higher education. [27] .
* Stephen Wiltshire, British architectural artist [28]
* Caiseal Mor author of A Blessing and a Curse: Autism and Me; bestselling fantasy fiction author, musician and artist [29]

[edit] Autistic savants

Main article: Autistic savant

* Alonzo Clemons, American clay sculptor [30]
* Tony DeBlois, blind American musician [31]
* Leslie Lemke, blind American musician [32]
* Jonathan Lerman, American artist [33]
* Thristan Mendoza, Filipino marimba prodigy [34]
* Derek Paravicini, blind British musician [35]
* James Henry Pullen, gifted British carpenter [36]
* Matt Savage, U.S. autistic jazz prodigy [37]
* Henriett Seth-F., Hungarian autistic savant, poet, writer and artist [38]

[edit] People with severe autism

* Tito Mukhopadhyay, author, poet and philosopher [39]
* Lucy Blackman, university educated autistic author [40]
* Larry Bissonette , accomplished international autistic artist. [41]
* Amanda Baggs, advocate of rights for autistic people. [42]

People like my son Conor who has severe autism with serious developmental delays and communication deficits are not listed at Wikipedia. There is no mention, even generically, to the many autistic people who live out their adult lives in residential and institutional facilities being cared for by professional caregivers. Wikipedia allows the Neurodiversity Ideologues to mislead the world about the nature of autism with nonsense like this list.

May 15, 2007 Posted by | autism awareness, autism disorder, credibility, neurodiversity, Wikipedia | 12 Comments

Autism & Thimerosal – Geier & Geier (2007) Study Suggests A Link?

One of the great debates in autism discussions has been between those who believe that mercury based vaccine preservatives cause or contribute to incidents of autism and those who do not subscribe to that theory. The overwhelming consensus from the scientific community has been that there is no evidence to support such a link. Notwithstanding that consensus there are still a large number of parents of autistic children ( I am not one of them ) and one journalist/author (David Kirby) who believe that there is indeed a link. A few of the parents have been very vocal. Some, if internet discussions can be believed, have gone as far as harassing and threatening those who oppose their views. At least those are the allegations advanced by some “neurodiversity” commentators some of whom are equally as hostile and rude to those who disagree with their views as the extremist few among the mercury-thimerosal advocacy groups. Now, another study by Geier & Geier (2007) apparently suggests that there is a causal connection between Thimerosal and autism. Hopefully, this study will be neither rejected nor accepted based solely on prior belief. Hopefully the scientific professionals capable of properly analyzing this study will do so and offer their commentary. Hopefully hostility and hatred between the few extremists in both the mercury-vaccine and the neurodiversity groups will stand aside in favor of reason and proper scientific assessment of this study and any further evidence relevant to this issue which might arise.

The following commentary, however, appears to indicate that the old pattern of jumping to conclusions about issues in the mercury-autism debate, based on ideological pre-disposition will, unfortunately, continue to prevail and that the world autism community will be inflicted with more needless hostility between the mercury and neurodiversity groups. The author’s readiness to conclude that the study “leaves little doubt” does not suggest the kind of reasoned professional analysis that will be needed to properly interpret and assess the study.

The Journal of Toxicology and Environmental Health, Part A: Current Issues, an authoritative journal featuring original toxicological research, has published, “A Case Series of Children with Apparent Mercury Toxic Encephalopathies Manifesting with Clinical Symptoms of Regressive Autistic Disorders,” by Geier and Geier (2007).

This new study leaves little doubt there is a direct causal link between mercury exposure from Thimerosal-preserved biological products (vaccines and Rho(D) products) and mercury poisoning diagnosed as an autism spectrum disorder (ASD).

Thimerosal (49.55% mercury by weight) is a highly toxic mercury compound used as a preservative in some OTC and prescription drugs, including most flu shots given to pregnant women, infants, children, adults, and the elderly.

On April 19, 2007, Dr. Larry L. Needham, Chief, Organic Analytical Toxicology Branch, CDC, announced to the US National Academy of Sciences’ Institute of Medicine that Thimerosal was among the “Chemicals Linked to ASD.”

Thus, Geier and Geier (2007) provide the first clinical case-series of ASD patients that confirmed this causal role for Thimerosal-preserved drugs in patients having a regressive ASD diagnosis.

The Geiers describe a case-series of eight patients who had:

— a regressive ASD diagnosis,

— elevated levels of androgens,

— excreted significant amounts of mercury after a chelation challenge,

— biochemical evidence of decreased function in their glutathione pathways,

— no known significant mercury exposures except from Thimerosal-preserved vaccines and Rho(D)-immune globulin preparations, and

— alternative causes for their regressive ASDs ruled out.

This clinical study also found a significant dose-response relationship between the severity of the ASD symptoms and the total mercury dose these children received from Thimerosal-preserved drugs.

Based on differential diagnosis, these patients were exposed to significant mercury amounts from Thimerosal-preserved biologic drugs during their fetal and neonatal development as well as between 12 and 24 months of age. Thus, these initially normally developing children suffered mercury toxic encephalopathies that manifested with clinical symptoms consistent with their regressive ASD diagnosis.

Hence, mercury poisoning should be considered as a cause for those children exhibiting the symptoms of an ASD in any differential diagnosis designed to assess underlying causes.

Today, any parent or other healthcare provider can easily confirm whether, or not, a non-chelated autistic child is mercury poisoned by having urinary porphyrin profile analysis (UPPA) testing run at LabCorp (Test#120980) or Laboratoire Philippe Auguste (Urine Porphyrin Profile).

For additional information on UPPA testing for mercury poisoning, please visit the “UPPA” page on CoMeD’s web site,

Dr. King

May 1, 2007 Posted by | autism disorder, CDC, David Kirby, Dr. King, Dr. Larry Needham, Geier, mercury, neurodiversity, thimerosal, vaccines | 5 Comments

Autism Reality – Joy and Broken Windows

Parents seeking to better the lives of their autistic children must overcome many obstacles including prejudice and ignorance of those who blame them for their children’s behaviour. Bettleheim’s twisted theories no longer prevail, at least not openly. But as a lawyer I have advocated for families whose parenting skills in raising their autistic children are questioned by family service and child welfare bureaucrats with no real experience or knowledge of autism or what it means to raise an autistic child. In the everyday world some strangers will still look on disapprovingly when your child engages in public tantrum or other “odd” behaviour.

A further obstacle arises from those who should know better, the few parents of autistic children and some high functioning autistic adults, who glorify autism; presenting it as a positive even superior aspect of the human condition. These “posautive”, or “neurodiversity” advocates react with outrage when other parents try to present the whole truth about autism. They reacted angrily, and shamefully, when parents in the Autism Every Day video told their stories. These brave and caring parents were accused of staging scenes for the video and mocked as engaged in self pity parties. All because they told the world the truth about their children’s autism.

Parents do not need self appointed internet autism experts from afar to tell them to find joy in their children. Nor do we need them to falsely tell the world that autism is all joy and wonder. It is not. Autism is a serious neurological disorder and the realities of life for autistic persons, particularly severely autistic persons, and their families can be hard. Parent advocates do not need sympathy or pity from the “posautive” crowd. Nor do we need their support. What would help is if they ceased creating a false picture of the reality of autism – as experienced by many autistic persons and their families.

The photos above portray the joy of living with my severely autistic son Conor, age 11 – a quiet moment with Nanny, some roughhousing fun time with Dad. But the third picture is that of a window broken by Conor this past Friday, broken with his hand as he rushed from one end of the house to the other. He cut his hand, though not seriously. The window was replaced (with car windshield type glass). But the fact remains that he could have hurt himself badly. And the fact remains that danger and injury are ever present realities that have to be contemplated much more frequently with our autistic son then with his brother who is not autistic. And it does become expensive repairing and replacing. My son’s life experiences and prospects are not the same as the high functioning internet essay writers. His will be a life being cared for by others. After I am deceased I will not be able to fight for him or otherwise ensure that his best interests are respected. Conor is a joy, a great and tremendous joy, to our family. That is why we fight for his best interests now against immovable bureaucracies and against the false pictures of autism painted by internet autism glorifiers who do my son no favours with their false pictures.

April 29, 2007 Posted by | autism awareness, autism disorder, autism every day, autism reality, Conor, high funcitioning autism, neurodiversity | 3 Comments

Autism Vox Falsus

There is in the world autism community, at least on the internet component of that community, a group which portrays itself as the true voice of autism. It is essentially an internet based community comprised of some high functioning autistic persons, some parents of autistic children, and some “professionals” including some psychiatrists and educators who oppose attempts to treat or cure autism. Self described as the Neurodiversity movement this group poses as human rights advocates for the autistic but often resembles a hate group in its personal attacks and demonization of any parent or group which attempts to find and fund treatments and cures for autism. Any mention of the serious challenges of the more severe forms of autism is attacked by the high fucntioning autism internet essayists. Even mentioning that some autistic suffer from cognitive deficits, even the use of the expression “low functioning autism” is met by hostility from the Neurodiversity advocates. Far from being the true voice of autism, Neurodiversity is a false voice; an autism vox falsus.

Parents across Canada and the United States and elsewhere in the world have fought hard to seek and obtain a better life for their autistic children through treatment and education. For their efforts they are mocked, ridiculed and demonized by the Neurodiversity movement . The core of the Neurodiversity movement is a number of high functioning autistic persons who do not wish to be cured of their autism. They view their autism as an essential component of who they are as individuals. That is a view point that I can and do respect. They have the right to wish to remain autistic. Where Neurodiversity becomes troublesome is when they fight to prevent parents from seeking cures and treatments for their own children and the demeaning tactics they use in doing so.

One of the Neurodiversity internet commentators who is generally more polite than most is Ms. Kristina Chew the mother of a 10 year old autistic boy, who holds a Ph.D and is a classics teacher. Although Ms Chew has in fact employed ABA interventions to assist her son she downplays that fact on her blog site “Autism Vox” where her guest commentators usually present a Neurodiversity anti-autism cure perspective. But, she is admittedly almost always exceptionally polite and diplomatic. That diplomatic bent changed dramatically this past week though with two comments from Ms. Chew about the Don Imus racism controversy. In these comments Ms. Chew made clear her animosity towards Autism Speaks and towards the parents in the Autism Every Day video.

I really don’t have anything to say about Don Imus — I am no fan, to be sure — but living here in New Jersey, and my husband being a Rutgers alum — I have been appalled, or just outraged, at his use of “crude, offensive language” about the Rutgers women’s baskbetball (sic) team last Wednesday while discussing their defeat in the NCAA Women’s Basketball Championship.

I do not know understand how any national autism organization can be associated with someone who can use such hateful words.“

It should be noted that, just under a year ago, Imus’ MSNBC show broadcast A New Decade for Autism, a fundraising event at which the video Autism Every Day was first screened—a video which depicts life with autism as difficult (as it can be, but there are ways to change this, for sure) and hopeless; a video that was felt by more than a few autistic persons and parents of autistic children as portraying autism as horrrible and hateful only: No surprise, perhaps, that it had the endorsement of Imus.

The heinous crimes committed by Autism Speaks? Raising money for research and treatment of autistic children. The Autism Every Day video consisted of parents telling of the challenges presented by their childrens’ autism. For that these parents, along with MSNBC and Autism Speaks , have been vilified by the Neurodiversity movement. Until this week Ms Chew and Autism Vox had been polite and diplomatic in expressing her Neurodiversity anti-autism cure sentiments. The language above though removes the pretence of civility from Autism Vox.

The use by Ms Chew of Mr Imus’ offensive personal comments to smear an organization and group of parents fighting to improve the lives of their autistic children is itself offensive.

Autism Vox
? Autism Vox Falsus is more like it.

April 13, 2007 Posted by | Auism Vox, autism advocacy, autism disorder, autism every day, autism speaks, Don Imus, neurodiversity | 9 Comments

Pay Now or Pay Later – Canadian Senate Autism Funding Committee’s Misnamed Report

If you read the title of the Standing Senate (Committee) on Social Affairs, Science and Technology Report of its Enquiry on Autism Funding you would think the Senators were well informed and got the message about the need to provide funding and support now for treatment and help for families with autistic family members. If you did though you would be wrong, dead wrong. The esteemed Senators bent over backwards not to offend a few anti-cure, anti-treatment crusaders and don’t intrude on provincial jurisdiction politicians but did nothing to actually help families fighting for treatment, cure and care for their autistic loved ones. They actually took a backward step in one area when they regressed to the 1960’s and recommended more study on the effectiveness of autism interventions. Thus the Canadian Senate now stands decades behind family services agencies in most Canadian provinces, state agencies in the US including New York, Maine and California, the Association for Science in Autism Treatment, even the experts called by the BC government in the Auton case who testified that ABA was the treatment of choice. Congratulations Senators your report is a colossal tribute to doing nothing.

Far from offering insights into the realities of autism across the autism spectrum the distinguished Senators listened to a small number of high functioning autistic persons who do not see autism as a disorder. The Senators bought into the argument of anti-treatment anti-cure autistic persons appearing before them and making argument and failed to even ask who speaks for the many autistic persons who can not speak for themselves?

Thanks for nothing Senators. Help like yours is no help at all to Canadian families seeking help for their children, a mission you passed on.

The Standing Senate Committee on Social Affairs, Science and Technology

Final Report on:

The Enquiry on the Funding for the Treatment of Autism


Autism Families In Crisis

Chair : The Honourable Art Eggleton, P.C.
Deputy Chair : The Honourable Wilbert Joseph Keon

March 2007







A. Definition of Autism.. 3

B. Prevalence of Autism.. 4

C. Effectiveness of Interventions. 4

D. Need for Treatment 5


A. Access to Autism Treatment 7

B. Wait Time for Assessment, Diagnosis and Treatment 8

C. Stresses on Families. 9

D. Insufficient Disability Supports. 9

E. Lack of Accurate Information on Autism and its Prevalence. 10

F. Need for Research. 11


A. Mechanism for Funding Autism Therapy. 13

B. Public Awareness Campaign. 14

C. Knowledge Exchange Centre. 15

D. Research. 16

E. Human Resources Initiative. 16

F. Mechanism to Ensure the Future Financial Security of Autistic Children. 17

G. The Income Tax Act as a Means to Reduce the Financial Burden of ASD families. 18

H. Consulting with Autistic Individuals and Others. 19

I. Need for a National Autism Strategy. 19




in Part III




The federal government, in collaboration with the provinces and territories, establish a comprehensive National ASD Strategy;


All stakeholders, including individuals with autism, be consulted on the components that should be part of the Strategy, such as treatment, research, surveillance, awareness campaigns, community initiatives, education, respite care for families, etc.; and,


The Strategy include child, adolescent and adult treatments and supports.



The federal government convene a federal/provincial/territorial ministerial conference to examine innovative funding arrangements for the purpose of financing autism therapy;


The conference establish an appropriate level of funding by the federal government;


The conference identify measures of accountability in the use of federal funds for autism treatment;


The conference recommend listing of essential services for ASD; and,


The conference also define the feasibility of introducing measures such as supports for caregivers, including respite, family training and assistance, assisted living support as well as career and vocational training.



Health Canada, in consultation with autistic individuals and other stakeholders, implement a national public awareness campaign to enhance knowledge and understanding about ASD; and,


Health Canada use its dedicated webpage as one component of a public awareness campaign.


in Part III




The federal government provide funding for the creation of an Autism Knowledge Exchange Centre;


The Centre include an Internet-based web portal for access to reliable data and credible links for those seeking autism information;


The Centre be at arm’s length to government; and,


The Centre be mandated with the dissemination of best practices based on authoritative research and scientific consensus.



The federal government create an Autism Research Network and provide substantial new funding for this through CIHR; and,


The Autism Research Network work collaboratively with all stakeholders, including individuals with ASD, to develop a research agenda.



The federal government work collaboratively with the provinces and territories to address the human resource issues including training standards and inter-provincial mobility in the field of ASD.



The federal government, in implementing the recommendations of the Minister of Finance’s Expert Panel on Financial Security for Children with Severe Disabilities, ensure that autism qualifies as an eligible disability.



The Department of Finance and the Revenue Canada Agency study the implications of income splitting for ASD families and issue a report to the Minister of Finance by June 2008.


These departments issue the results of the tax measures review no later than 31 December 2007 and that these include a clear set of tax benefits for ASD individuals and their families.



Health Canada invite autistic individuals to attend the symposium and be given the opportunity to contribute as equal partners in an exchange with other participants and,


Health Canada ensure that the symposium is conducted with a clear set of goals and defined outcomes and is based on consensus building.



Extract form the Journals of the Senate of Thursday, June 22, 2006:

Resuming debate on the inquiry of the Honourable Senator Munson calling the attention of the Senate to the issue of funding for the treatment of autism.

After debate,

The Honourable Senator Moore moved, seconded by the Honourable Senator Banks:

That the Inquiry on the issue of funding for the treatment of autism be referred to the Standing Senate Committee on Social Affairs, Science and Technology for study and report; and

That the Committee submit its final report no later than November 30, 2006.

The question being put on the motion, it was adopted.


Extract from the Journals of the Senate of Monday, November 6, 2006.

The Honourable Senator Fraser moved, seconded by the Honourable Senator Cook:

That, notwithstanding the Order of the Senate adopted on Thursday, June 22, 2006, the Standing Senate Committee on Social Affairs, Science and Technology which was authorized to examine and report on the issue of funding for the treatment of autism, be empowered to extend the date of presenting its final report from November 30, 2006 to May 31, 2007.

After debate,

The question being put on the motion, it was adopted.

Paul C. Bélisle

Clerk of the Senate


The following Senators have participated in the study on the issue of funding for autism treatment of the Standing Senate Committee on Social Affairs, Science and Technology:

The Honourable Art Eggleton, P.C., Chair of the Committee

The Honourable Wilbert Joseph Keon, Deputy Chair of the Committee

The Honourable Senators:

Catherine S. Callbeck

Andrée Champagne

Ethel M. Cochrane

Joan Cook

Jane Mary Cordy

Joyce Fairbairn, P.C.

Jim Munson

Nancy Ruth

Lucie Pépin

Marilyn Trenholme Counsell

Ex-officio members of the Committee:

The Honourable Senators: Marjory LeBreton (or Gerald J. Comeau) and Céline Hervieux-Payette, P.C. (or Claudette Tardif)

Other Senators who have participated from time to time on this study:

The Honourable Senators: Gustafson, Mercer, Peterson, Rompkey, St-Germain and Watt.



Families with autistic children in Canada are facing a crisis. When a child is diagnosed with autism and therapy is prescribed by a health professional, publicly funded health care insurance does not pay for the cost of the therapy. As a result, families must often pay out of their own pockets for a very large portion of expensive autism therapy – whose cost may reach $60,000 per year – because provincial and territorial jurisdictions offer only limited financial assistance. Families with autistic children across the country are therefore calling on the federal government to take a leadership role with respect to autism. As a matter of comparison, they point to the Combating Autism Act of 2006 in the United States which authorizes the federal government to spend $US 945 million over five years for autism research, screening, intervention and education.

Text Box: (…) if you pay for it now, look at the return you will get on your investment. The people with autism will get out in the real world and get jobs, and that will stimulate the economy. Or you can pay later, which means they will go into group homes and it will cost the taxpayers a lot of money in the long run to keep them there. Jason Oldford, Fredericton, New Brunswick (12:32)Autism is a complex, lifelong, developmental disability which is 3 to 4 times more prevalent among boys than girls. Children and adults with autism may find it hard to communicate with others and to relate to the outside world. Autism can result in severe problems in social interaction, communication, and behaviour. A generation ago, the vast majority of the people with autism were eventually placed in institutions, while many others were misdiagnosed. Today, however, the picture is brighter. There is evidence to suggest that some people who have autism can improve significantly with proper therapy. When provided with appropriate support, training and information, families can often ensure that their son or daughter can enjoy a good quality of life. Autism therapy, along with autism-specific programs and services, provide the opportunity for individuals to be taught skills, which allow them to reach their fullest potential and contribute positively to society. Many individuals with autism eventually become more responsive to others as they learn to understand the world around them. They can learn to function at home and in the community and to develop skills that will enable them to secure and retain employment. Families with autistic children and autistic individuals themselves insist that governments must pay now for autism therapy, services and supports in order to obtain the greatest return on investment. Otherwise, they will pay later in terms of much higher costs in future years for welfare, social services and institutional care.

It is not the first time that the Standing Senate Committee on Social Affairs, Science and Technology has heard about the challenges of autism. Between 2003 and 2006, during its study on mental health, mental illness and addiction, the Committee had an opportunity to hear and learn from persons living with autism, their families and experts. We were made aware that autism is an extraordinarily complex issue that is also very controversial. At the time, however, we heard from some that autism should not be considered as a mental illness and accordingly decided that a more thorough investigation was required before taking a public position. For this reason, when the Committee released Out of the Shadows at Last in May 2006, the report did not contain recommendations with respect to autism. Nonetheless, our report did state that we hoped to undertake a thematic study on autism.

Within this context, in June 2006, the Committee received a mandate from the Senate to undertake an inquiry and to report on the issue of funding for the treatment of autism and on the need for a national autism strategy. In response to this mandate, the Committee held nine meetings and heard from 53 witnesses including autistic individuals, parents of autistic children, advocacy groups, health professionals, autism researchers, and selected federal department representatives, as well as one provincial minister. Witnesses also had the opportunity to discuss the announcement made on 21 November 2006 by the Honourable Tony Clement, Minister of Health, regarding a set of federal initiatives related to autism, and to share their views on recent parliamentary business related to autism, including:

· Bill C-211. This bill, which was introduced on 6 April 2006 by Peter Stoffer, Member of Parliament from Sackville-Eastern Shore (Nova Scotia) and is at first reading, calls on the federal government to include autism therapy under the Canada Health Act to ensure uniform and equitable access for all children with autism.

· Bill C-304: This bill, which was tabled on 17 May 2006 by Shawn Murphy, Member of Parliament for Charlottetown (Prince Edward Island), but was defeated on 21 February 2007, proposed, like Bill C-211, to include autism therapy under the Canada Health Act. In addition, it required the Minister of Health to convene a conference of all provincial and territorial ministers of health for the purpose of working together to develop a national strategy for the treatment of autism.

· Motion M-172: This motion was introduced on 27 October 2006 by Andy Scott, Member of Parliament for Fredericton (New Brunswick) and adopted on 5 December 2006. The motion calls on the federal government to create a national autism strategy that would include: the development of evidence based standards for the diagnosis and treatment of autism; the implementation of innovative funding methods for the care of those with autism; the provision of additional federal funding for autism research; and, the implementation of a national surveillance program for autism.

In this report, the Committee summarizes the testimony heard during these hearings, highlights issues raised by witnesses and identifies action needed by the federal government in response to these issues.


The Committee heard many different points of view on the complex issue of autism. Contrasting views were presented with respect to the definition of autism, its prevalence, the effectiveness of various autism interventions, and the need for treatment. Sometimes, divergent opinions were highlighted among autistic individuals, advocacy groups and families. This makes it very difficult to achieve consensus and to identify potential options for policy considerations. For this reason, it is clear that any set of recommendations will not please everyone. At the same time however, this reinforces the call for a strong foundation of autism research and underscores the need for unbiased, accurate information through education, knowledge exchange and public awareness. This also suggests that consultations with all stakeholders including, perhaps most importantly, autistic individuals, are essential to policy decision-making.

A. Definition of Autism

The Committee was given two distinct definitions of autism. The first one, which was provided by numerous witnesses including researchers, health professionals, advocacy groups, parents and autistic individuals, refers to the Diagnostic and Statistical Manual of Mental Disorders, 4ed (DSM-IV). According to this definition, autism or “Autistic Disorder” is a mental illness and one of a group of five “Pervasive Developmental Disorders” (PDD). The other four include Asperger’s Syndrome, Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS), Rett’s Syndrome, and Childhood Disintegrative Disorder (CDD). The Committee was also told that, in practice, reference is often made to “Autism Spectrum Disorders” (ASD) which encompass Autistic Disorder, Asperger’s Syndrome, and PDD-NOS. It is interesting to note, however, that ASD is not a term that is officially defined in any international medical classification codes. The DSM‑IV indicates that individuals with these disorders exhibit qualitative impairment in social interaction; restricted repetitive and stereotyped patterns of behaviour, interests, and activities; and qualitative impairment in communication. Autism is described according to a spectrum with varying degrees of pervasive impairment that range from mild to severe.

The second definition presented to the Committee was provided by other autistic individuals and researchers in the field. In their view, autism (or ASD) is not a mental disorder; it is rather a neurological difference classified as a developmental disability that begins in early childhood and persists throughout adulthood. They explain that while autism may affect behaviours in three crucial areas of development – social interaction, communication, and restricted interests or repetitive behaviours – it also presents measurable and admirable differences in perception, attention, memory, intelligence, etc. In their view, autistic individuals have strengths and traits not seen in the general population, just like “non-autistics” have strengths and weaknesses of their own. Like non-autistic people, individuals with autism may suffer from mental health problems and illnesses, including for example depression, self-hate and suicidal ideation. Those mental health problems may be exacerbated by the lack of knowledge about and appreciation of autism among non-autistic individuals.

Text Box: (…) there is no universal guide to autism. There are countless different degrees of autism and different kinds of autism spectrum disorders. To truly get a universal understanding of autism, you would have to talk to thousands of individuals and families. (…) all Canadians with autism spectrums disorders are unique individuals with different strengths, skills, abilities and needs. Kristian Hooker, Selkirk, Manitoba (12:22)Despite these different definitions, the two groups acknowledge that no two individuals with autism are alike and that a wide range of approaches and interventions must be considered. In addition, they both acknowledge that no one knows the exact causes of ASD. The first group insists on the need for early and intensive behavioural intervention, while the second argues that autistic individuals should receive the assistance, accommodation, acceptance, and respect they need to succeed in society as autistic people. They all insist that treatment and support services must be provided throughout the lifespan of the individual.

B. Prevalence of Autism

Another area of contrasting opinion that arose during the Committee hearings relates to the prevalence of autism. Numerous witnesses suggested that there is an autism “epidemic”. Others argued that the increased prevalence is due to better identification of ASD and not to an increase in the actual incidence. The Committee heard that increased sensitivity to ASD, more accurate diagnoses as well as significant changes to diagnostic criteria may have contributed to the higher numbers.

It is unclear whether the actual prevalence of ASD is changing over time, but the number of diagnoses has been on the rise. Currently, the rate often cited for ASD in Canada is 6 per 1000, or 1 in 166 and is consistently detected 3 to 4 times more often in boys than in girls. This translates to about 48,000 autistic children aged 0 to 19 and 144,000 adults within Canada. Those who support the view of an increase in prevalence insisted that action must be taken now in providing publicly funded autism therapy, while others pointed to the need to invest more government funding into research to determine more adequately the prevalence and to assess the effectiveness of autism therapy.

C. Effectiveness of Interventions

Another area of disagreement which was also evident among the various advocacy groups/parents relates to the choice of autism interventions. Some witnesses argued that the only intervention options that should be made available to autistic children are Applied Behavioural Analysis (ABA) or Intensive Behavioural Intervention (IBI), while others favoured an integrated, multi-disciplinary approach, combining biomedical and nutritional treatments in addition to various forms of behavioural interventions. Still, others felt that there is no one approach that can be universally applied to all and that it should be left to the ASD professionals, in consultation with the family, to determine the best treatment option. The Committee heard that some treatment options have little, or no, scientific evidence of their efficacy and that some others have even been found harmful. Many witnesses, including some individuals with ASD, emphasized that funding should only be provided for treatments with a solid evidence-base. Again, this raises the question as to whether more funding should be devoted to research to improve knowledge about treatments and their effectiveness.

D. Need for Treatment

Text Box: (…) autistics should receive the assistance, accommodation, acceptance, and respect we need in order to succeed in society as autistic people. Michelle Dawson, Montréal Quebec, Brief to the Committee, p. 9.The Committee also heard differing opinions between autistic adults and the parents of autistic children with respect to the need for treatment. Parents want their children to receive intervention as soon as diagnosis is made, for as long and as intense as needed. Some autistic individuals, however, do not believe that early, intensive intervention is required. They explained that autism is not a degenerative condition and that, accordingly, autistic people do not inherently deteriorate or die in the absence of specific autism treatments. They also pointed out that many autistic individuals are able to learn and to communicate without intensive interventions. Moreover, they told the Committee that the nature of the treatment itself can deny or hamper particular abilities, strengths and traits of autistic individuals. Therefore, in establishing public policy, decisions about the nature and needs of autistic individuals should be made in consultation with autistic individuals and their families.


A. Access to Autism Treatment

The Committee was told that access to autism treatment is problematic for different reasons. For one, ABA/IBI, the most intensive form of intervention, is very expensive and can cost parents as much as $60,000 per year if no public funding is provided. These interventions are not exclusively “health services” but include a wide range of psychological, social and educational services. In addition, there is the jurisdictional aspect to consider when discussing the funding and provision of services. Witnesses stressed that provinces and territories have jurisdiction over the provision of autism interventions (either through the health, education, social and community service sectors), but they noted that the federal government has more ability to finance them through its spending power.

Text Box: ABA is an expensive treatment. You have probably heard the figure $60,000 per year per child. It is derived from 52 weeks a year at 40 hours a week at $30 an hour. Parents put themselves on the verge of bankruptcy when they have to pay for that treatment out of pocket. I certainly understand the situation they are in. I am amazed they can cover the treatment they need for their child and still pay the bills. How they do it, I do not know. Somehow, they get it done. Jason Oldford, Fredericton, New Brunswick (12:28)Currently, all provinces and territories, with the exception of Nunavut, provide some funding for autism therapy, most notably for ABA/IBI. There is, however, no national program that would ensure uniform and equitable access to therapy by autistic individuals. As a result, autism therapy is funded under a variety of approaches and the number of hours of therapy allowed and the amount of funding provided per child vary greatly from one jurisdiction to another. Witnesses urged that equitable and uniform access to treatment should be made across the country regardless of the individual’s ability to pay.

Witnesses spoke of the need for flexibility in treatment options as different approaches are needed for different individuals. There was a strong consensus that all available treatment approaches should be monitored for effectiveness and that treatment regimens should be provided based on scientific evidence. It was suggested that some treatments that are currently offered for ASD do not meet the rigors for scientific validation. For this reason, they stressed the need for properly designed, randomized and controlled clinical trials to evaluate the spectrum of therapies. It was also indicated that the individuals themselves who are being treated should be regularly monitored for progress and that ineffective therapy either be stopped or redesigned. In any case, harmful therapies should be discredited or even prohibited.

Numerous witnesses noted that autism treatment requires the participation of a multidisciplinary team. For example, medical practitioners, psychologists, psychiatrists, speech-language pathologists, occupational therapists and special education providers all have a vital role to play in ASD therapy. For many witnesses, early intervention is critical, regardless of the approach taken for treatment. The Committee also heard that another consideration is access to these services in both English and French and that the shortage of trained professionals is even greater for the francophone community living outside the province of Quebec.

Witnesses noted that that the recent announcement by the Minister of Health is only a “very modest first step” as it does not include any initiative related to the funding of autism therapy. This is despite the fact that the burden associated with the cost of autism therapy is the most pressing issue facing families with autistic children. For many witnesses, only a federal funding program would allow access to universal, equitable and uniform treatment in Canada.

B. Wait Time for Assessment, Diagnosis and Treatment

The Committee was told that access to autism treatment is not only impeded by its high cost and a lack of public funding, but that it is also significantly affected in some areas within Canada by a shortage of professional service providers. Witnesses explained that, in turn, this shortage has produced waiting times for assessment and diagnosis as well as for treatment. The Committee was made aware of the common, but unacceptable, experience of parents being unable to access timely assessment and diagnosis of their children. Witnesses spoke of the frustration of waiting months, if not years, to obtain the ASD diagnosis, only to find the child was now too old to qualify for publicly funded treatment. Witnesses also spoke of the irony of placing children in the privately funded stream due to the long waits in the public queue, only to be turned down for public funding later as the treatment produced such advances in the child that they now no longer qualified.

Another factor associated with longer waiting times relates to the expansion of eligibility for autism therapy to an increasing number of children. For example, the Committee was told that when Ontario decided to continue public funding for IBI therapy beyond age six, waiting lists for IBI therapy in that province grew substantially. The Committee was told that in Alberta, despite parents obtaining direct public funding for therapy, children cannot access treatment because there is a shortage of service providers. It heard that in contrast, Ontario has invested in increasing service provider capacity and does not have a shortage at this time, but the provincial government currently lacks the money to fund the therapy. The Committee was told that there is a fear that those who received autism training in Ontario may be enticed to move to Alberta.

Therefore, in some jurisdictions, like Ontario, additional federal funds could help alleviate some of the wait for publicly funded treatment. In other jurisdictions, such as Alberta where there is a shortage of providers, adding more public funding would have no immediate impact. After all, additional funds for treatment will not be helpful if there is no one to provide the therapy. In this case, there must be sustained capacity-building to attract, train and retain specially trained professionals, such as, but not limited to, child psychologists, speech-language pathologists, occupational therapists and special educators. Witnesses saw a role for the federal government in such an endeavour in terms of developing appropriate guidelines and standards for professional training.

Witnesses also stressed that mainstream medical practitioners are often too busy and not adequately trained about autism or the available therapy options. They also talked about teachers and assistants who are not properly trained to accommodate autistic children. Where training is made available for educators, it is not mandatory. Witnesses suggested that care of some autistic children in the hands of untrained personnel may create a dangerous scenario.

C. Stresses on Families

The Committee heard from many parents and advocacy groups about the tremendous emotional stresses and financial challenges faced by families with autistic children. Witnesses spoke of the devastation for parents and siblings who struggle to find ways to best accommodate the special needs of an individual with ASD. The Committee was told that families must often adapt their whole lifestyle to the needs of their ASD child. Witnesses frequently reported that there needed to be one stay-at-home parent to provide the necessary comfort and consistency, not to mention added support and intervention. Moreover, it is often necessary to have extra help within the home or at school. The Committee was also told that in the course of hiring treatment providers, who often provide treatment in the home setting, parents suddenly discover that they have become employers and are essentially operating a clinic.

Some witnesses stated that families “are bleeding” and that help is needed right now, not just for autistic children, but for parents and siblings as well. Needed supports are varied and include such things as respite care and home-care aid.

D. Insufficient Disability Supports

The Committee was told that the federal government offers a variety of financial supports that are applicable to individuals with ASD or their parents. In 2004-2005, the federal government invested $7.6 billion in income support, tax measures and programs for people with disabilities. Income support is primarily available through the Canada Pension Plan Disability Benefits. As well, there are tax measures such as the Disability Tax Credit, the Medical Expense Tax Credit and the Child Disability Benefit. In the 2006 budget, the government increased the annual Child Disability Benefit from $2,044 to $2,300 and the medical expense supplement was increased to $1,000 from $767. In addition, the Committee was told that additional federal funding for disability supports and services is provided under the Canada Health Transfer and the Canada Social Transfer. However, numerous witnesses shared the view that this support is insufficient given the diverse and substantial needs they have, and that ASD is not always eligible for tax credits or deductions intended for disability or medical expenses.

E. Lack of Accurate Information on Autism and its Prevalence

Text Box: A big problem with people facing ASD in society is that others often have a stereotype of how a person with ASD is supposed to look or behave. Many people with ASD could eliminate that stereotype but rarely get that opportunity, especially with a large group of people. The one thing that people should realize about people with ASD is that we are really no different from anyone else. We may have traits or abilities that seem unique or different but so does everyone else. Kristian Hooker, Selkirk, Manitoba (12:24)Several witnesses told the Committee that many Canadians do not understand what autism is; this makes it difficult for them to know how to interact with and accommodate autistic individuals and their families. An awareness campaign was suggested in order to enhance the public understanding of autism. Lack of understanding may also extend to professionals who would benefit from ongoing education to ensure that children are not mislabelled and improperly assessed. Minister Clement recently announced that Health Canada will create a dedicated page on its website to guide the public to ASD information available through the Canadian Health Network and other resources. Given the contrasting views and opinions about ASD and autism therapy, it will be crucial for the department to consult all interested parties to ensure that ASD information is presented in an unbiased fashion.

Text Box: Generally speaking, autism-related sites lag way behind what is really happening. They contain a lot of obsolete information, which but adds to the confusion of parents and adults. Adults come to us, at the association, with all kinds of explanations that simply do not hold water. This is due to the fact that the information posted on sites is not updated. Brigitte Harrisson, Quebec (12:35)Text Box: The first requirement of any website on autism should be that a person be in charge of keeping it up to date. Given the speed with which knowledge is moving forward in this day and age, this is a must. It is essential to take every precaution before disseminating information. Sources must be verified, in order to avoid having statements such as autism is a mental illness or some other qualifier such as that which I heard earlier and which I will attempt to forget. It is important that all sources be verified. I could never repeat this often enough: It is essential to go through autistic people themselves and not just those surrounding them, observing them and basing their reactions on their fears. Brigitte Harrisson, Quebec (12:35-36)Witnesses also signalled the poor data on prevalence. They suggested that there are inadequate surveillance systems to obtain the required data. They discussed the National Epidemiological Database for the Study of Autism in Canada (NEDSAC), which aims to determine whether the prevalence is increasing. This project conducts surveys only within various regions of Canada however, and therefore cannot be expected to supply comprehensive surveillance data. Minister Clement informed the Committee that his recent announcement includes the launch of a consultation process on the feasibility of developing an ASD surveillance program through the Public Health Agency of Canada. This was also suggested in Motion 172 by Andy Scott, M.P. Witnesses welcomed this initiative.

Numerous witnesses complained that there is currently no dedicated, central source of information on autism and autism therapy. A vast body of information exists but it is not being made readily available in terms that are clear and concise that the general public can appreciate. Witnesses frequently stated that the parents of autistic children are forced to navigate through a very complex web of information with little help. They suggested that there is an abundance of inaccurate information as well as considerable accurate information with no way for individuals to distinguish between them. This can be particularly harmful since families impacted by autism are willing to soak up any and all information they can find. As such, they emphasized that there is a need for a centralized, unbiased and credible source for information, a need for knowledge exchange and for effective communication of research findings.

F. Need for Research

Research has a vital role to play in the provision of reliable information. According to the Canadian Institutes of Health Research (CIHR), funding for autism-specific research has increased from just over $1 million in 2000-2001, to $3.5 million 2005-2006. In total, CIHR invested some $15 million during this period. The Committee also heard that Genome Canada, the Canadian Foundation for Innovation and Health Canada invest federal funds into autism research. Witnesses commented on the excellence of the Canadian autism research community, highlighting the collaborative spirit and collegiality. They insisted, however, that additional resources are necessary so that promising theories and hypotheses can be tested. It was also explained that autism research is not an area that lends itself to industry investment and that private donations to charitable organizations that fund research, though generous and vital, are not sufficiently stable from one year to the next. For these reasons, witnesses suggested that funding by the federal government in a substantial and on-going manner is imperative.

The Committee heard of promising programs such as that funded jointly by the CIHR, the National Alliance for Autism Research (now called Autism Speaks) and the Fonds de recherche en santé du Québec which will train the next generation of autism researchers. Despite this promising initiative, witnesses stressed that much more is needed in the way of training more researchers as well as promoting a multidisciplinary approach to research.

The announcement by Minister Clement, in contrast to Motion 172 which calls for additional federal funding on autism research, only includes the possibility of establishing a new research chair focusing on effective treatment and intervention for ASD. The research community welcomed this government decision but, much like the advocacy groups, they insisted on the need for additional autism research funding for areas such as the incidence, causes, effective screening tools, and treatment development including psychopharmacological and psychosocial interventions. Witnesses stressed the importance of distinguishing between short-, medium- and long-term needs when establishing research priorities.


the Committee is encouraged by recent steps taken by the federal government to address autism concerns. However, it also heard the frustration expressed by many witnesses that both the recent announcement of Minister Clement and the private motion (M-172) by Andy Scott, M.P., regarding the creation of a National Autism Strategy do not commit to specific actions. The Committee wants to recommend a number of urgent initiatives that the federal government should implement over the next two years in response to the challenges faced by ASD individuals and their families. These initiatives will reduce the stresses for those affected by ASD as well as increase our knowledge base for this developmental disability.

A. Mechanism for Funding Autism Therapy

Text Box: If the federal government truly became the leader, while still intending to transfer the program to the provinces later on, it would be worthwhile for it to set the example and to keep autistic people involved in the treatment protocols. Allow me to repeat myself: It is really important that those autistic persons who are autonomous, who are capable of helping, do so. The need is an urgent one. This is what we are seeing. Therefore, if you are able to launch something, if you set the tone, then the provinces will obviously be able to jump on board afterwards. Brigitte Harrisson, Quebec (12:20)The Committee’s primary focus was federal funding for autism treatment. Many witnesses stressed the urgent need to immediately provide extra financial resources for families who insist they need to access very costly ASD therapy. Some suggested that the government in fact had a moral obligation to do so.

The provision of health care, education and social services, including those relevant to ASD, are provincial/territorial responsibilities with federal funds being provided for these in the forms of the Canada Health Transfer and the Canada Social Transfer. Although federal funds make up a substantial portion of the budgets in these areas, the provinces and territories have the sole authority to decide how the money is spent. Numerous witnesses supported the private member bills C-211 (Peter Stoffer, M.P.) and C-304 (Shawn Murphy, M.P.) and suggested that ABA/IBI should be included as medically necessary services under the Canada Health Act in order to ensure universal and free access to autism therapy across the country. However, the Committee recognizes that the Act is not an appropriate mechanism to ensure federal funding for ABA and IBI therapies. The reality is that the Act does not refer to any specific disease, condition or treatment. Moreover, the medically necessary services defined under the Canada Health Act are those provided by physicians or other health care practitioners either in hospitals or doctors’ offices, which is not the case for autism therapy.

The Committee considered other funding mechanisms to assist the provinces and territories in financing autism treatment. The proposed catastrophic prescription drug insurance program, recommended by this Committee in October 2002 in its report entitled The Health of Canadians – The Federal Role, Volume 6: Recommendations for Reform, which aims to ensure that families do not suffer undue financial hardship for required drug therapy provides one model. Families with autistic children, because of the extremely high cost of ABA/IBI therapies, could benefit from a similar program that provides financial assistance when costs exceed a pre-determined proportion of the family income. Witnesses, however, did not comment on the potential benefits of such a proposal.

Therefore, the pressures and challenges experienced by families coping with the demands of caring for a child or children with ASD result in considerable stress. The Committee believes that the financial burden on these families and caregivers is excessive and a solution must be found.

Text Box: In developing a funding policy for autism, it is important that adults are an integral part of the equation and that more able is not translated to mean less needy of supports and services. Children with autism grow up to be adults with autism. Daniel Hatton, Hamilton, Ontario Brief to the Committee, p. 1.Another issue that was raised during the hearings was the need for additional supports such as supports for caregivers, including respite, family training and assistance, and assisted living support. There is a need to study the feasibility of introducing such measures. Witnesses also underscored that the needs of autistic adults must be taken into consideration when it comes to education, vocational training and employment (currently done by Social Development Canada with Opportunities Fund for People with Disabilities).

Witnesses suggested that concerns over funding arrangements could be initially addressed at a federal/provincial/territorial ministerial conference. This was suggested under the private motion by Andy Scott that was recently passed. This motion also states that innovative funding methods should be developed. The need for a federal/provincial/territorial ministerial conference is also acknowledged in Shawn Murphy’s private member bill C-304. Therefore, the Committee finds that it is urgent that the federal government assume a leadership role and recommends that:

The federal government convene a federal/provincial/territorial ministerial conference to examine innovative funding arrangements for the purpose of financing autism therapy;

The conference establish an appropriate level of funding by the federal government;

The conference identify measures of accountability in the use of federal funds for autism treatment;

The conference recommend listing of essential services for ASD; and,

The conference also define the feasibility of introducing measures such as supports for caregivers, including respite, family training and assistance, assisted living support as well as career and vocational training.

B. Public Awareness Campaign

Throughout the course of the hearings on this difficult subject, witnesses identified a clear need for a national public awareness campaign. The Committee agrees that there is a general lack of understanding among Canadians about autism and its spectrum of disabilities and feels that a greater understanding of ASD by all Canadians could help to reduce the stress experienced by these individuals and their families. The general population should be made aware of the associated early signs and symptoms in order that parents might pursue assessment of their child at the youngest possible age. Such a campaign could also serve as a tool to promote the Knowledge Exchange Centre (discussed below). The Committee therefore recommends that:

Health Canada, in consultation with autistic individuals and other stakeholders, implement a national public awareness campaign to enhance knowledge and understanding about ASD; and,

Health Canada use its dedicated webpage as one component of a public awareness campaign.

C. Knowledge Exchange Centre

There was a consensus among witnesses about the need to consolidate areas of education, clinical expertise and research endeavours to enhance and facilitate collaborative efforts. The Committee sees a need for a clearinghouse of “best practices” (including international experiences) which would allow each province or territory to develop or enhance its own services. It would also serve as the means to provide families with an unbiased source of accurate information including current research findings. Families affected by ASD are already under considerable stress and the Committee asserts that it is unfair to make them spend their precious resources and what little time they have wondering what to do, where to go for help, what help to get, whom to trust and whom to believe. A focal point for ASD information, provided by a trusted source, would save individuals from navigating the current confusing and unreliable maze and could sort out the accurate from inaccurate information.

As a corollary, there is a need to provide the centralized infrastructure for the dissemination of information that is helpful, accurate and supportive and to put scientific findings into plain language. The Committee heard that the university setting might be most appropriate as it is often viewed as unbiased and trustworthy.

Thus, the Committee recommends that:

The federal government provide funding for the creation of an Autism Knowledge Exchange Centre;

The Centre include an Internet-based web portal for access to reliable data and credible links for those seeking autism information;

The Centre be at arm’s length to government; and,

The Centre be mandated with the dissemination of best practices based on authoritative research and scientific consensus.

D. Research

The Committee sees a need for a significant investment in research into autism. Although there has been considerable work in the research community there are still many areas that need to be more fully explored. The Committee believes that there is a clear role for the government to fund research that will explore the causes of autism, develop treatment models, establish new treatment methods, determine treatment suitability, refine treatment approaches for older children and adults and develop appropriate evaluation tools so that treatment effectiveness can be properly measured.

The Committee is aware that CIHR is prepared to take the lead in a federal autism research program and work with all partners and stakeholders in order to define the priorities. It is important for CIHR to work inclusively with such partners as the Autism Society Canada, Autism Speaks and the Canadian Autism Intervention Research Network to develop a comprehensive research agenda. The development of this agenda should: include multidisciplinary research teams; encourage more programs that train autism researchers; provide the long-term, randomized, controlled trials required to properly measure treatment effectiveness; facilitate collaboration; and, include public policy research. Moreover, CIHR must also consult with autistic individuals in identifying priorities.

As such, the Committee recommends that:

The federal government create an Autism Research Network and provide substantial new funding for this through CIHR; and,

The Autism Research Network work collaboratively with all stakeholders, including individuals with ASD, to develop a research agenda.

E. Human Resources Initiative

The Committee heard repeatedly that shortages exist across Canada in various specialty fields. In addition, witnesses indicated that teachers and medical practitioners should be better trained to spot signs and symptoms of ASD in order that an assessment can be ordered in a timely fashion. Witnesses contended that the need for a multi-disciplinary approach to autism assessment, diagnosis, treatment, training, education and research cannot be overstated. Some suggested that the multi-disciplinary teams should be supervised by a regulated health care professional. Others indicated that more of the professional groups involved should be certified by a regulatory body. Further, the Committee heard that more must be done to increase enrolment for the training of all relevant social services and education professionals (including supports for special training for teachers/aides, life skills programs, mental health services professionals), to encourage recruitment, and to optimize retention of these individuals, including perhaps improved remuneration.

The shortage of human resources is of paramount concern in the context of extending autism therapy. Some witnesses spoke of the need to establish a national training centre for autism therapy. Although it is not an area that lends itself easily to federal intervention, the Committee understands that this needs to be resolved before additional funds for treatment would be optimally beneficial.

While respecting the jurisdictional constraints in this area, the Committee recommends that:

The federal government work collaboratively with the provinces and territories to address the human resource issues including training standards and inter-provincial mobility in the field of ASD.

F. Mechanism to Ensure the Future Financial Security of Autistic Children

Although the main focus of the Committee’s study was on today’s needs of autism families, parents also expressed their concern about the future of their autistic children when they will no longer be there to care for them. The issue regarding the future financial security of children with severe disabilities was addressed in a recent report commissioned by the Minister of Finance. The report, entitled A New Beginning, recommended one new fiscal measure under the Income Tax Act – the Registered Disability Savings Plan – and two related new legislated programs – the Disability Savings Grant and the Canada Disability Bond Program. The Registered Disability Savings Plan would be modelled after the current Registered Education Savings Plan and would involve no restrictions on who could contribute to the plan (families, friends and strangers); it would have a lifetime contribution limit of $200,000. The Disability Savings Grants would be modelled after the existing Canada Education Savings Grant. It would be equivalent to 20% of the annual amount contributed to the Registered Disability Savings Plan, for the first $2,000 per year of contributions. Finally, the Canada Disability Bond would be broadly modelled after the Canada Learning Bond provisions currently in effect; it would provide low income families with at least $1,000 per year for the first 20 years of the registration under the Registered Disability Savings Plan.

Parents of autistic children welcome these three measures. They explained that other family members and friends often provide financial assistance to pay for autism therapy and that making them eligible as contributors under the Registered Disability Savings Plan was a sound recommendation. Some witnesses expressed concern about the lifetime contribution limit set at $200,000 and recommended that this ceiling be removed. However, Mr. James Barton Love, Chair of the Expert Panel, explained that this limit had been recommended to ensure that contributors would not benefit from excessive income referral. Another issue related to the treatment of the contributions under the Registered Disability Savings Plan by provincial social assistance plans. It was explained these contributions could disqualify a person with disabilities from receiving provincial benefits or could reduce the payments to be made under social assistance programs. To address this concern, it is essential that federal and provincial negotiations be initiated with a view to having contributions under the Registered Disability Savings Plan entirely exempted from the asset test in provincial social assistance programs.

The Committee welcomes the recommendations of the Expert Panel and is pleased that the government accepted them and announced the Registered Disability Savings Plan in Budget 2007. It supports the federal government in this attempt to enable parents to set aside funds today to financially support children with disabilities when they are no longer able to provide support. Moreover, the Committee feels that the report of the Expert Panel responds particularly well to the concerns of parents about the future of their autistic children. Therefore, the Committee recommends that:

The federal government, in implementing the recommendations of the Minister of Finance’s Expert Panel on Financial Security for Children with Severe Disabilities, ensure that autism qualifies as an eligible disability.

G. The Income Tax Act as a Means to Reduce the Financial Burden of ASD families

Another option that was explored during our autism study included tax breaks to families with autistic children. The Committee acknowledges that the federal government does currently offer tax credits or deductions to benefit those affected by ASD, such as the Disability Tax Credit and the Medical Expense Tax Credit. Although Committee members heard little testimony as to the extent that these tax credits are available to ASD families, they did hear that the tax treatment of expenditures related to autism under the federal Income Tax Act does little in alleviating the enormous financial burden faced by families due to the cost of autism therapy. This is particularly true for those with low or no taxable income.

In addition, the Committee heard repeatedly during its hearings that ASD families often have a single income earner because the second parent must stay home to care for the affected child or children. Frequently, the earning parent must also take on a second job in order to pay the high cost of ASD care and treatment. Witnesses explained that this results in pushing the income earner into a higher tax bracket, reducing the effect of the medical expense tax credit. The Committee heard that income splitting would be one way of assisting these struggling families. Therefore, the Committee recommends that:

The Department of Finance and the Revenue Canada Agency study the implications of income splitting for ASD families and issue a report to the Minister of Finance by June 2008.

The Committee also heard about current restrictions that prevent the roll over of RRSPs and RRIFs of family members into absolute discretionary trusts for individuals with ASD. These trusts are designed to protect the assets of the individual as well as their disability benefits and entitlements. Members feel strongly that any tax, or other financial relief, that is created for persons with ASD and their families, should not have a negative impact on their disability benefits and entitlements. This position was taken, in the context of all persons living with disabilities, in the report Disability Tax Fairness. This report was submitted to the Ministers of Finance and National Revenue in December 2004 by the Technical Advisory Committee on Tax Measures for Persons with Disabilities. The Committee applauds the government for having implemented all of the policy recommendations made in this report, but we are concerned that no action has yet been taken with respect to allowing an RRSP or RRIF roll over into a discretionary trust for a disabled person. The government indicated in early 2005 that it would “conduct a review of the tax rules in this area with a view to providing more flexibility where appropriate”. This review is still on-going.

Therefore, the Committee also recommends that:

These departments issue the results of the tax measures review no later than 31 December 2007 and that these include a clear set of tax benefits for ASD individuals and their families.

H. Consulting with Autistic Individuals and Others

The Committee appreciates that the complexity of this issue cannot be efficiently and effectively resolved without extensive consultation with all stakeholders. The diversity of opinions about the nature of autism, its prevalence, the effectiveness of treatments and interventions, etc., requires considerable consensus building in order to identify priorities and achieve common goals. Consensus building can be achieved only through ongoing consultations with all interested parties. In particular, the perspective of autistic individuals needs to be included.

Text Box: At that national symposium I would like nothing better than to see people with autism being invited to speak. Jason Oldford, Fredericton, New Brunswick (12:33)In his announcement, the Minister of Health stated that Health Canada will sponsor an ASD stakeholder symposium in 2007 to “encourage the development and sharing of ASD knowledge among health care professionals, researchers, community groups, teachers, individuals and families.” The Committee welcomes this announcement, however would like to reiterate the need for input from all stakeholders, including autistic Canadians. We insist that this symposium must take place sooner rather than later.

Therefore, the Committee supports the symposium announced by the government and recommends that:

Health Canada invite autistic individuals to attend the symposium and be given the opportunity to contribute as equal partners in an exchange with other participants and,

Health Canada ensure that the symposium is conducted with a clear set of goals and defined outcomes and is based on consensus building.

I. Need for a National Autism Strategy

Finally, and most importantly, the Committee wants to see the recommendations described above implemented as part of a National Autism Strategy. Autism is a very complex issue and it is extremely difficult to efficiently and completely address all of the parameters involved. Members of the Committee agree that the solution does not exist in a tidy policy package and that whatever approach is taken should be done within a forum that has a clear authority to effect change and that avoids inter-departmental and inter-governmental “turf-wars.” No matter how a National Autism Strategy is structured, witnesses were clear that individuals with ASD must be included in the consultation and play a role within the Strategy itself, that it receive adequate ongoing funding, that it span the lifetime of affected individuals and that it strive to achieve consistency across the country in terms of information dissemination, assessment, treatments and supports. Therefore, the Committee recommends that:

The federal government, in collaboration with the provinces and territories, establish a comprehensive National ASD Strategy;

All stakeholders, including individuals with autism, be consulted on the components that should be part of the Strategy, such as treatment, research, surveillance, awareness campaigns, community initiatives, education, respite care for families, etc.; and,

The Strategy include child, adolescent and adult treatments and supports.


Members of the Standing Senate Committee on Social Affairs, Science and Technology are profoundly aware of the challenges facing those with autism and their families. We are encouraged by recent events such as the motion in Parliament to explore autism treatment funding, the government’s announcement regarding autism initiatives, and the establishment of the Mental Health Commission in Budget 2007. However, all members agree that the federal government must act now to assist these Canadians. The Committee fully supports the view expressed by families with autistic children and autistic individuals themselves that governments must pay now; otherwise, they will pay later. We believe that the latter is simply not an option.

March 29, 2007 Posted by | autism disorder, autism treatment, Canadian Senate, neurodiversity | Leave a comment

A Spectrum of Perspectives About Autism

Much of what passes for discussion of autism issues on the internet is either congratulatory back slapping and in group high fives or it is bitter acrimonious sniping. I have been pleased over the last few days to be able to engage in rational e-mail discussion with Lisa Jo Rudy of About Ms. Rudy is the parent of a higher functioning autistic child. My son is diagnosed with a lower functioning classic Autism Disorder. Her site tends to feature links to several prominent anti-autism cure, neurodiversity blog sites such as Autism Vox, Neurodiversity, Autism Hub, Autism Diva, Mom-NOS etc.

Notwithstanding her affinity for the neurodiversity perspective and my aversion to that socio-political movement we were able to exchange views rationally on such topics as curing autism, autism realities etc. I give Ms. Rudy most of the credit for that. She has also taken the generous step of referencing my perspective and this blog site on About actions which I genuinely appreciate. I thank Ms. Rudy for her calm rational discussion of autism issues with someone from outside the neurodiversity perspective. Ms. Rudy’s words about a spectrum of autism perspectives are worth remembering.

A Spectrum of Perspectives on the Autism Spectrum
If autism is a spectrum disorder, then it seems reasonable that there should be a spectrum of perspectives on that disorder. At one end of that spectrum are the neurodiversity advocates who feel that autism is a difference to be celebrated; on the other end are those who work toward and advocate a cure for autism. Both groups are passionate, and both believe deeply in their own points of view – with some people, like me, sharing elements from both perspectives.

Harold Doherty is a Canadian blogger and the father of a young man with classic autism. Having seen some of the more frightening ways in which the world can treat a person with profound autism, he believes strongly in the importance of seeking treatments and potential cures. All this while supporting and loving his son:

“I love my son dearly. I have just returned from walking about our community with him, enjoying his company. As I typed this note he very affectionately grabbed me from behind and hugged me – while squeezing forcefully on my windpipe. He did so without any aggressive intent but without understanding the potential consequences of his actions.

That is autism reality.”

March 27, 2007 Posted by | autism cure, autism spectrum disorder, Lisal Jo Rudy, low functioning autism, neurodiversity | 2 Comments

The Autism Acceptance Project – Rejecting Reality

The Autism Acceptance Project is one of the more recent rhetorical adventures of the anti-cure, autism is wonderful, movement also known as neurodiversity. If I sound cynical it is because I am. With a son with classic Autism Disorder who is profoundly autistic I, unlike the TAAP people, can not afford the luxury of wishful thinking. I am not seeking help for my son’s many positive attributes. I am seeking help for his negative attributes, the very serious, even life threatening deficits, which impair his quality of life, and will lead to a life of being cared for by others, just as they do for many other lower functioning, inarticulate autistic persons who are not represented in the Neurodiversity discussion groups. The TAAP folks object to candid description of unpleasant truths.

They react hysterically when parents seeking help for their own autistic children speak the truth. Witness the verbal abuse heaped by them on the parents of the Autism Every Day video. I will not stop speaking the truth while the TAAP and neurodiversity crowd write pseudo-scientific critiques dismissing evidence based standards of treatment for autism and condemning truthful portraits of classic lower functioning Autism Disorder.

If the neurodiversity crowd wants to paint a more positive picture for art galleries and society teas fine. Let them petition the American Psychiatric Association to change the names of higher functioning autism disorders to some other labels so that they do not have to be associated with the lower functioning classic Autism Disorder people like my son. That should ease their acceptance goals considerably. They can feel good about themselves and their friends in the neurodiversity movement. Those of us fighting for real help for our autistic children can do so without the annoying sounds of Autism’s sirens singing in the background.

March 25, 2007 Posted by | autism disorder, autism reality, low functioning autism, neurodiversity, TAAP | 6 Comments

Autism Is a Disorder, Not Just a Different Order

Denial is one of the first problems encountered by parents of newly diagnosed autistic children. The challenge of facing up to the reality of an autism diagnosis for your child is huge. Once a parent gets past the denial stage they must deal with helping their child to the fullest extent possible. There is no doubt amongst those who seriously seek improvement in the abilities of their autistic children to live a full and happy life that intensive early intervention is absolutely necessary. Nor is there any serious doubt that behavioral intervention is the only evidence based intervention currently available to help your child. But for the parent starting out on that effort you will receive some misleading signals from advocates of the “neurodiversity” movement. Although much of the rhetoric emanating from the neurodiveristy direction is confused and contradictory, in its essence neurodiversity states that “autism is not a disorder, just a different order” to use the words of a high functioning autistic person who called into a CBC radio talk show on the subject of autism.

The neurodiversity movement, if it presented the positive attributes of people who happen to be autistic, or presented the whole picture of autistic persons on all points of the spectrum, could be a positive force for bettering the lives of autistic persons. But it does not do these things. What the neurodiversity movement tries to do, at its heart, is convince the world that autism is not a disorder. Part of this effort involves demonizing anyone who describes some of the unpleasant truths associated with some cases of autism. This occurs when such unpleasant topics as feces smearing, self aggression or other acts of violence are discussed realistically by parents such as the courageous parents of the Autism Every Day video.

We have experienced these unpleasant truths in our household. Our autistic son, Conor, is a joy, a blessing. The numerous posts on this blog site about Conor present the joyful element of our son. But the reality is that he also can become aggressive, pulling on his mother’s hair suddenly or biting. These are truths, unpleasant truths but truths nonetheless. Our furniture is largely in shambles with legs broken off chairs, mirrors shattered, cabinet and closet doors unhinged, keys removed from computer keyboards. I have experienced an arm coming suddenly around my neck from behind while driving the family car.

Describing such truths is not dehumanizing our son as the neurodiversity authors, would have you believe. It is speaking the truth and describing the facts as they are not as we would wish them to be. It is not a violation of Conor’s human rights to describe him, and his autism disorder, in honest realistic terms. To the contrary, it would be a gross violation of his human rights to disregard the challenges he confronts by virtue of being autistic and failing to take steps to remedy those challenges using interventions judged effective based on the best available evidence.

The neurodiversity movement is proud of those high functioning autistic persons who can write lengthy articles on internet sites, speak to courts and legislatures, and make interesting interesting internet videos. It also likes to embrace and diagnose as autistic historical figures of great intelligence such as Albert Einstein. But the neurodiversity, autism acceptance, movement does not like to talk about lower functioning autistic persons or the very real challenges faced by families who actually care for and live with lower functioning persons. Worse that that, as the Autism Every Day parents, and a host of other parents trying to help their autistic children have discovered, they do not want anyone else to talk about these realities either.

The neurodiversity movement does not represent the views of all autistic persons. It represents the views of SOME autistic persons, some, not all, high functioning autistic persons. These individuals, and the handful of misguided professionals who adopt their point of view, would have you believe that there are no low functioning autistic persons, that it is wrong to even use such terms as high functioning or low functioning. They do not want to acknowledge that some autistic persons are intellectually impaired. They do not want to talk about the autistic persons who actually live in institutions around the world in less than pleasant conditions, including here in New Brunswick Canada.

At its heart neurodiversity is an internet movement based on a group of people who share in common a diagnosis of a medical disorder – autism – but who refuse to accept that autism is a disorder. Neurodiversity is for this reason inherently a contradiction but one that can be very misleading in the view of autism that it presents to the world.

The DSM-IV diagnostic criteria:

# A total of Six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3).

1. qualitative impairment in social interaction, as manifested by at least two of the following:
1. marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
2. failure to develop peer relationships appropriate to development level
3. a lack of spontaneous seeking to share enjoyment, interest, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
4. lack of social or emotional reciprocity

2. qualitative impairments in communication as manifested by at least one of the following:
1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alterative modes of communication such as gesture or mine)
2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
3. stereotyped and repetitive use of language or idiosyncratic language
4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

3. restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
2. apparently inflexible adherence to specific, nonfunctional routines or rituals
3. stereotypes and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
4. persistent preoccupation with parts of objects

# Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.

# The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder

Autism is a different order but it is also very much a disorder. The DSM-IV says so. My life experience with my profoundly autistic 11 year old son confirms for me that fundamental truth.

March 19, 2007 Posted by | applied behavioral analysis, autism disorder, autism every day, DSM-IV, neurodiversity | 3 Comments