But Conor got the "hang" of it pretty quick.
Thursday, July 31, 2008
Conor Fun In The Banana Swing
But Conor got the "hang" of it pretty quick.
Adult Autism Residential Care
It is refreshing to see news of someone actually doing something positive to address the residential care needs of autistic adults. In International expert opens specialist home for people with autism Caring Business reports on a a new residential home for autistic adults in Rotherham in the UK. The home was opened by Dr Olga Bogdashina who is reported to have done extensive research into sensory-perceptual and communication problems in people with autistic spectrum disorders.
Dr Bogdashina stressed the importance of providing support throughout their life – not just when they are young. ‘All too often, people with autism receive support during childhood, but when they mature and reach adulthood, they are forgotten,’ she said. ‘We have to remember that autistic children grow up. That is why it is essential to have facilities like Rother Heights – so they can receive the necessary care and support they still need in adult life.’
Rother Heights can accommodate 24 residents in four bungalows, which are designed with the personal needs of each resident in mind. The interior of each bungalow is decorated to stimulate the senses and includes coloured inset lighting, tactile and durable furniture and furnishings and unique architecture. The centre also includes a number of safety features, such as remotely controlled light and water supplies and Perspex window coverings. The home is run by Autism Care (UK) Limited, part of the Maria Mallaband Care Group.
There is a glaring need for adult autism facilities like the Rotherham center in many jurisdictions. New Brunswick has absolutely NO autism specific residential care facilities. Examples like the Rotherham center are helpful reminders of the options that could be put in place if we care enough and have the will to provide a decent life for our more severely autistic adults.
Wednesday, July 30, 2008
MFEAT Welcomes Nova Scotia Family Forced to Relocate to Manitoba to Access Pre-School Autism Treatment Program
MEDIA RELEASE
SCOTIA FAMILY FORCED TO RELOCATE TO MANITOBA TO ACCESS PRE-SCHOOL
AUTISM TREATMENT PROGRAM
28 July 2008
FOR IMMEDIATE RELEASE
MFEAT welcomes to Manitoba Dr. Leif Sigurdson and his wife Dr. Leanne
van Amstel, parents of a child with Autism Spectrum Disorder (ASD) and
medical migrants from Nova Scotia. As reported by CTV News last Sunday
the family made the drastic decision to leave their careers in Halifax
to access treatment for their three-year-old son, who was diagnosed
with ASD a year ago. Their son will receive 35 hours of therapy per
week in St. Amant's Applied Behavioral Analysis (ABA) program. It is
unfortunate the family felt forced to relocate for sake of their
child, but as Manitoba residents they will finally have access to the
treatment their child needs to develop, while the province also gains
two highly specialized medical professionals.
The disruption in the lives of this new Manitoba family is the reality
facing many families caring for a child with ASD across Canada. While
ASD is a serious neurologic condition of unknown cause, decades of
studies have demonstrated that 25-35 hours of ABA per week
significantly improves the cognitive and communicative function of
children receiving it. The American Academy of Pediatrics, in its 2007
Clinical Report on managing ASD has written, "The effectiveness of
ABA-based intervention in ASDs has been well documented through 5
decades of research ... Children who receive early intensive behavioral
treatment have been shown to make substantial, sustained gains in IQ,
language, academic performance ...".
Jamie Rogers, MFEAT's Director of Communications can relate to the
cross-country move made by the family, "When our two boys were
diagnosed with ASD in BC in 2005 we were facing a debt of $80,000 per
year to secure 35 hours of ABA per week. So we decided to move to
Winnipeg to enrol in St Amant's program. We learned of other
out-of-province families in the program who waited tens of months
without services following diagnosis or who were offered nothing at
all. We are grateful to MFEAT for fighting to get the St Amant
Pre-School ABA program in place, which has paid off enormously for our
kids. No parent of a child with another serious medical condition has
to move provinces or go bankrupt to obtain treatments that are proven
effective, so why those with ASD? There is a Senate Standing Committee
Report telling the government that families with an ASD child in this
country are in a crisis that needs a national response, but it
collects dust while our children and families endure major hardships."
Founded in 1997, MFEAT is an advocacy and support group for families
with a child, sibling, or loved one diagnosed with Autism Spectrum
Disorder - a neurological condition that affects 1 in 150 children and
has no known cure. Following years of negotiation with MFEAT, in 2002
Manitoba introduced a permanent pre-school ABA program for Manitoba
families, the only one of its kind in Canada. MFEAT successfully
convinced the Manitoba Government to implement a school-age ABA
program, which was announced in June.
Media enquiries please contact:
Kevin Augustine, President MFEAT: 204-444-4169
Tuesday, July 29, 2008
Talk Radio Network Nonsense
"The network is satisfied that he did not mean any disrespect to autistic children or their families, but was, instead, reiterating his longstanding concerns on public health issues."
How is calling autistic children brats, idiots and morons NOT disrespectful? How is spewing such hateful remarks "reiterating concerns on public health issues"?
Talk Radio Network's defense of Savage is nothing more than cow manure.
All disrespect intended.
Michael Savage Recommended For Dolthood
From what I understand Mr. "Savage" has attacked other groups Muslims, gays etc and will undoubtedly find an outlet somewhere in the US talk radio/television hate talk business to spew his hatred.
Having said that I enjoy reading of the loss of advertisers for his program and the protests. Of the many comments about Savage's silly hate spiel though one I enjoyed most is the title and remarks in an article by Dr. Phillip Leveque on Salem-News.com: Autism, Michael Savage and Dolthood.
"(MOLALLA, Ore.) - When I heard this dolt pontificating on television news that Autism was the result of bad parenting, I nearly threw-up. This totally absurd ranting was settled more than 50 years ago."
Sir Michael Savage, Dolt of the NTR, pretty well sums it up.
Monday, July 28, 2008
Autism and Mortality Rates
Mortality Rates in Autism is Lopez-Duran's review of Mouridsen, S.E., Bronnum-Hansen, H., Rich, B., Isager, T. (2008). Mortality and causes of death in autism spectrum disorders: An update. Autism, 12(4), 403-414. DOI: 10.1177/1362361308091653. He mentions a number of surprising facts disclosed by the Mouridsen et al study which suggests that autistic people, particularly autistic women, die much sooner than the general populaton.
What also struck me was the statement that "The cause of death commonly reported among the cohort with ASDs was epilepsy." My son does not have an epilepsy diagnosis but he does exhibit behavior which appears to me, as a layperson, to reflect epileptic behavior, including physical energy surges which cause him to become rigid and make growling noises, and the increasingly frequent rolling of his eyes back in his head. The possibility of epilepsy in addition to autistic disorder has been more in my mind of late and the thought that it could be a major cause of premature death of autistic persons is unsettling.
St. Amant and the Need for a REAL National Autism Strategy
St. Amant is a comprehensive resource for Manitobans with a developmental disability, acquired brain injury and autism. A non-profit corporation, St. Amant offers a wide range of programming, services and care to support individuals with a developmental disability, acquired brain injury or autism and their families.
Services include a large main residence, more than 50 community sites and homes, a research centre, a school and a daycare. Among other services, St. Amant offers an effective program for children with autism and for families who care for an individual with a developmental disability at home.
Canada's National Autism Crisis is directly affecting the autistic children being deprived of effective treatment solely because of where there families live. In some cases it is also resulting in the loss of essential medical resources for local communities.
Sunday, July 27, 2008
The Two Autism Faces of Pierre Poilievre
Autism FACE # 1 - Opposition MP Pierre Poilievre
While serving in opposition Conservative Party MP Pierre Poilievre was quite happy to use the cause of autistic children to bludgeon the Liberal government of the day as he did in the House of Commons on October 5, 2005.
38th PARLIAMENT, 1st SESSION
EDITED HANSARD • NUMBER 132
Mr. Pierre Poilievre (Nepean—Carleton, CPC): Madam Speaker, I rise today with honour to introduce petitions on behalf of constituents in my riding who wish to see the government finally show some leadership in seeking a national framework that would see autism treatment covered by health insurance as part of an overall universal health care system.
The government has deliberately excluded families, who have children with autism, from health coverage, and as a result middle class families are stuck with $40,000 health bills year after year. Members across the way do nothing about it.
Today I proudly introduce a petition calling for some action and calling for some fairness.
HOUSE OF COMMONS OF CANADA 39th PARLIAMENT, 1st SESSION No. 115 (Unrevised) Wednesday, February 21, 2007 1:00 p.m.
Private Members' Business
Pursuant to Standing Order 93(1), the House proceeded to the taking of the deferred recorded division on the motion of Mr. Murphy (Charlottetown), seconded by Mr. Szabo (Mississauga South), — That Bill C-304, An Act to provide for the development of a national strategy for the treatment of autism and to amend the Canada Health Act, be now read a second time and referred to the Standing Committee on Health.
YEAS: 113, NAYS: 155
NAYS
Poilievre
Then on February 21, 2007, wearing Autism Face # 2, now sitting as an MP and Parliamentary Secretary in the governing Conservative Party Mr. Poilievre voted NAY , he voted against, the Private Members' bill of MP Shawn Murphy which, if passed, would have required the federal government to do exactly what Mr. Polievre had previously crticised a different federal government for failing to do.
Pierre Poilievre now a "member across the way", sitting in government, has done exactly what he criticised the Liberals for doing - he has helped perpetuate the exclusion from medicare coverage of treatment for autistic children.
Pierre Poilievre you are a hypocrite.
Friday, July 25, 2008
The Two Autism Faces of Randy Kamp
When it comes to federal financing of autism treatment for Canadians with autism Conservative MP Randy Kamp (Pitt Meadows - Maple Ridge - Mission BC) has presented two decidedly different faces.
FACE # 1 - Opposition MP Randy Kamp
As reported in the Maple Ridge-Pitt Meadows Times, November 23, 2005
"Mr. Speaker, I am pleased to present a petition from the citizens of British Columbia, who rightly believe that IBI-ABA therapy can dramatically help children with autism. They are calling upon Parliament to amend the Canada Health Act and corresponding regulations to include therapy for children with autism as medically necessary treatment and require that all provinces provide and fund this essential treatment for autism," said Kamp.
...
"The measure of a society is how it treats its most vulnerable citizens. The question is not whether we have a legal obligation, but whether we have a moral obligation to help these children. We need to do everything we can to ensure that children with autism have the opportunity to become healthy and reach their full potential as participating members of their communities," said Kamp to the crowd, according to a news release.
...
"Minister Dosanjh has been unsupportive of autism groups since his days as Premier of B.C. I understand their frustration with him. As the federal Health Minister, he now has an opportunity to do the right thing and I call upon him to have compassion for autistic children and move forward with a National Autism Strategy," said Kamp.
FACE # 2 - Government MP & Parliamentary Secretary Randy Kamp
HOUSE OF COMMONS OF CANADA 39th PARLIAMENT, 1st SESSION No. 115 (Unrevised) Wednesday, February 21, 2007 1:00 p.m.
Private Members' Business
Pursuant to Standing Order 93(1), the House proceeded to the taking of the deferred recorded division on the motion of Mr. Murphy (Charlottetown), seconded by Mr. Szabo (Mississauga South), — That Bill C-304, An Act to provide for the development of a national strategy for the treatment of autism and to amend the Canada Health Act, be now read a second time and referred to the Standing Committee on Health.
YEAS: 113, NAYS: 155
NAYS -- CONTRE
Kamp (Pitt Meadows—Maple Ridge—Mission)
There it is.
Only Randy Kamp knows for sure. And maybe Stephen Harper.
Autism and Gordon Campbell's Vile IQ Flip Flop
Pete McMartin, Vancouver Sun
This week, Premier Gordon Campbell and Children's Minister Tom Christensen signed an order making an IQ of 70 or under one of the criteria for receiving services. They did so to do an end-run around a B.C. Court of Appeal ruling that the province could not deny services to the developmentally disabled on the grounds of IQ. The reversal arises from legal advice following an appeal court decision and is described as "temporary".
McMartin crticizes the arbitrary reliance on IQ as opposed to more realistic assessments of ability to function in society ... or face real life challenges ..... and uses the examples of two autistic persons whose parents he worked with in researching Faces of Autism, one just below the 70 IQ cut off, will be eligible for services, and one well over that number who will not. The mother of the autistic son with the higher IQ points out that her son has serious problems with socialization and problem solving, alone he might have no idea what to do if a fire breaks out in his home. He needs life long support to be able to cope.
But being "smarter" means Schuman's son needs fewer services and is better prepared to face the world as an adult, right?
Wrong. Autism is uneven in its effects. A child with autism might be able to, say, recite long passages of poetry from memory, but the same child may not be able to tie his shoes.
Pete McMartin called the Campbell government decision vile. I fully agree.Thursday, July 24, 2008
Autism Poser - Conservative MP Colin Carrie's Photo Op Support For Autistic Children
Oshawa MP Colin Carrie (Conservative) greeting Jonathan Howard, newsdurhamregion.ca
Mr. Carrie took advantage of the photo opportunity to meet with Jonathan Howard and talk about the need for treatment for autistic children but when he had the opportunity to do somethng about it, to actually provide the financing to ensure the necessary treatment, Mr. Carrie turned his back on autistic children. When MP Shawn Murphy brought a private members bill C-304 to amend the Canada Health Act to ensure financing for treatment of autistic children in Canada Mr. Carrie towed the party line and voted nay. Colin Carrie Oshawa Conservative MP, father of a son with Aspergers, and greeter of Jonathan Howard voted nay to treatment for autistic children.
National Strategy for the Treatment of Autism Act
The House resumed from February 14 consideration of the motion that Bill C-304, An Act to provide for the development of a national strategy for the treatment of autism and to amend the Canada Health Act, be read the second time and referred to a committee.
The Speaker: previous intervention next intervention
The House will now proceed to the taking of the deferred recorded division on the motion at second reading stage of Bill C-304 under private members' business. * * * (The House divided on the motion, which was agreed to on the following division:) (Division No. 122)
NAYS
Carrie
Tuesday, July 22, 2008
Autistic Teen Missing In Saskatchewan
Police are asking for the public's help after a teen with autism went missing Sunday.
Albert Edward Smallchild, 17, was last seen at home on the 2900 block of 20th Street West at around 3:30 p.m. Sunday. The aboriginal teen, who is six feet tall and weighs 190 pounds, was wearing grey shorts and a grey short-sleeved shirt.
Police say Smallchild understands directions, but does not know his address or how to get home.
Monday, July 21, 2008
Missing Autistic Man Found Wandering In Australian Park
The man, who was missing for nearly 20 hours, suffered only minor cuts and grazes despite braving heavy rainfall overnight and a minimum temperature of eight degrees.
Sunday, July 20, 2008
Ontario Failing Autistic Children - Canada Needs Medicare for Autism NOW
Stacey Sayer, a 38-year-old nurse in northern Ontario, said she's waited two years for her 9-year-old autistic daughter Maggie to receive IBI therapy and there's still no end in sight.
“We're very worried, yes, that time is ticking away and we're not getting what we need, and she's not getting what she needs,” Ms. Sayer said.
“We're worried about her whole future and what's going to happen to her in the end.”
Autistic Teen Missing in British Columbia
MAPLE RIDGE (NEWS1130) reports that RCMP is asking for help finding Jimmy Fearon, a missing 14 year old, high functioning autistic boy, last seen at around 2 pm Saturday in Maple Ridge.
Police say he's very friendly with strangers and is known to frequent bus stops and loves riding on buses. Ferron is white, 4"11, 80 lbs with short brown hair and brown eyes. He was last seen wearing blue jeans, a black t-shirt with some writing on the front and black running shoes. If you see Jimmy, call police.
Mother Upset Over Disappearance of Autistic Son from British Hospital
" to tighten up all procedures and guidelines where children and young people people who are in the care of hospitals, residential centres, schools and other institutions to hold staff accountable "
Saturday, July 19, 2008
O Canada Conor Loves His Lawn Chair
Run the Dream to Visit Conor's Birthplace Burlington
Jonathan has a positive autism message for autistic children and their families:
"I want children to dream like anything's possible. This run is my way of telling children and their parents to never stop dreaming."
BurlingtonPost.com, July 18, 2008
Autism Zero to Autism Hero - Illinois Governor Blagojevich

As described in Illinois Leading the Fight Against Autism on Health News:
The state's governor, Rod Blagojevich, used his amendatory veto ability to add autism coverage language from Senate Bill 1900 to House Bill 4255, a bill that required public employee health plans to cover preventative physical therapy treatment for multiple sclerosis patients. The new bill would be expanded to require insurers to cover autism diagnosis, psychiatric and psychological services, and to include occupational, behavioral, physical and speech therapy. Insurers would also be required to pay up to $36,000 a year per patient and to provide an unlimited number of medical visits for autism patients until the age of 21. Senate Bill 1900 was defeated earlier this year, despite broad bi-partisan support.
Hopefully Bill 4255 will become law, to the benefit of autistic children in Illinois. It could also stand as an example to other jurisdictions and politicians, including Canada and Prime Minister Stephen Harper, of how to address autism seriously.
Friday, July 18, 2008
Autism's Fool Of The Year
North Bay Needs A National Autism Strategy
The truth is that North Bay needs a National Autism Strategy that would see federal dollars flow to the provinces to provide autism treatment. Medicare for Autism is needed NOW to ensure that ALL autistic children receive timely effective treatment regardless of where in Canada their parents live. The autistic son of Alberta Conservative MP Mike Lake deserves access to autism treatment. So too does Ryan Berger, the autistic son of Shannon Berger of North Bay, Ontario.
Thursday, July 17, 2008
Missing Autistic Teen Found Safe In Minnesota
I too find it difficult, OK impossible, to refrain from sarcasm, and other negative forms of expression, when mentioning the "Joy of Autism" nonsense promoted by Estee Klar-Wolfond and other bloggers who argue that autism, a neurological disorder, should be celebrated. That a parent can celebrate the fact that their child has a neurological disorder that will impair and restrict his or her life is beyond my comprehension. I have written on this subject several times including in Joy of Conor, Why I Find No Joy In Autism - Biting and Other Self Injurious Behavior, and Autism Reality On The Road . Conor has gone missing in the past and when it happened it terrified me and each story of a missing autistic person hits me hard in the gut. He has injured himself with biting and on occasion his mother with hair pulling. These are not events to celebrate.
I find great joy in Conor, my buddy forever, but not in the autistic disorder which limits his life experiences so drastically. I will never surrender to the muddled thinking that would have me confuse joy in my son with joy in the autistic disorder which marks his life so seriously.
I am happy that the 17 year old in Minnesota was found safe.
Autism Mother Marni Wachs Discusses Neurodiversity
Harold Doherty
I admire and appreciate the important and necessary work of Jim Sinclair for both autism, and in general for people with disabilities. It is an extremely well-written and concise expression of rights of those with disabilities, the folly of many parents in missing the individual beauty and development of their own child in the constant misguided comparison with an incomparable standard, and the need for public accommodation and acceptance of autism as a different way of being. I myself have used that expression, "a different way of being"' in conversation, and it describes autism well, without defining it as less-than.
I do not, however, accept the entire message and implications of the neurodiversity perspective. I understand the need for a concise theory, but sometimes the neat and tidy package does not fit some of the intricacies of reality.
I do not accept a logic chain that precludes reasonable treatment efforts particularly early education / intervention from being defined as anything but unacceptance, of one’s child and autism in general. I fully love and accept my child, regardless of the abilities he has now or in the future. I don’t accept that it makes me a lesser parent in that I am sending the message that my son is “not good enough” or I don’t accept him as he is. I am a full parent to my children. The same parenting ideals hold for my daughter who is neuroytpical. I am parenting her, based on my love, her needs and what will help her to live a full and happy life. I have always worked hard as a parent to educate her. Does that then imply that I do not accept her? Of course not, it means that I want to educate, stimulate, give options for how to be in the world, teach skills to foster communication and connection with others, as much independence as possible by trying to be the best possible
parent.
If you logically extend Jim Sinclair’s argument, then no child is accepted if they are being educated. If we accepted children as they are, then we would not need to alter their natural state of being by educating them. Would the neurodiversity perspective have me feel guilty or wrong for parenting appropriately as per my definition of good parenting?
Sinclair’s stance works well for natural disabilities, but autism may not always necessarily be the natural sate of being for a particular individual. I do believe there may be some on the spectrum who have autism from a genetic basis, or that autism began before birth, which may indeed fall completely under the neurodiversity umbrella. However, the possibility of environmental triggers playing a role in autism exists, which would mean the possibility exists for reversal or treatment of same, as an unnatural state of being in certain cases. I love my son whether he was born with autism, developed it in utero, or was injured environmentally at some point which triggered or enhanced it. Just as parents whose children have cancer fully love and accept them, but still want to find a cure or treatment, as well as give them an enriching and happy life, how ever the condition progresses, so I want for my son. As for using cancer as a comparison, the comparison begins and ends with the way I have used it specifically in the above example.
I agree with Mr. Sinclair that rigid insistence that the child with autism communicate with neurotypical people in only a neurtotypical fashion is selfish and narrow-minded, as well and limiting to the parent-child relationship and the child’s development. I agree with the need for those with autism to have allowances, accommodations, ways and places to be in the world. Education of the public regarding the rights of those with autism is sorely needed.
I applaud the work and feel that the neurodiversity perspective is a necessary part of public education and awareness, but I wish the perspective did not require a scapegoat to secure the strength of its message. Parents benefit from such guidance to a point, but not the accompanying pressure and judgment.
Words cannot define the overwhelming love I feel for my son, and no “perspective” will tell me that I am not acting in his best interests, and that I as his parent, am in the appropriate position to do so.
Finally, I fully and unconditionally love and accept my son (and always will), and I want the very best education and treatment for him. The two concepts are not mutually exclusive.
Marni Wachs
Winnipeg, Manitoba
Sunday, July 13, 2008
Autism Learning Quotes
"Our work reinforces the importance of early intervention and behavioral therapy
- Christopher Walsh, chief of genetics at Children's Hospital Boston, co-author of study which
found that genes linked to a heightened risk of autism are crucial to a child's ability to learn, Scientific American, July 11, 2008
ABA Effectiveness and Autism's On Off Switches
"The largest deletions implicated genes, including PCDH10 (protocadherin 10) and DIA1 (deleted in autism1, or c3orf58), whose level of expression changes in response to neuronal activity, a marker of genes involved in synaptic changes that underlie learning. A subset of genes, including NHE9 (Na+/H+ exchanger 9), showed additional potential mutations in patients with unrelated parents. Our findings highlight the utility of "homozygosity mapping" in heterogeneous disorders like autism but also suggest that defective regulation of gene expression after neural activity may be a mechanism common to seemingly diverse autism mutations."
The study of 88 families in which one or more children had been diagnosed with autism, and the parents of each autistic child were cousins in the Middle East found that some genes involved in early learning are turned off but may be capable of being turned back on, Scientific American reports that:
"We're showing, on the one hand, that autism seems to have a large genetic component," says study co-author Christopher Walsh, chief of genetics at Children's Hospital. "But, the genes that are involved are actually those that are involved in responding to the environment and learning."
The findings, Walsh says, reinforces the importance of early diagnosis of autism and intervention, particularly behavioral therapy and learning in enriched environments through repeated activities. Performing these sorts of tasks may help strengthen cellular connections, compensating for the malfunctioning genes."
"Our work reinforces the importance of early intervention and behavioral therapy," he says. "The more we understand about genetics the more we understand how important the environment is."
Saturday, July 12, 2008
Conor and Dad Relax on Saturday Morning
Friday, July 11, 2008
Autism Society Canada Rejects Evidence Based Approach To Autism Treatment And Fails Autistic Children
Autism Society Canada Statements on Autism Treatment
The Autism Society Canada has made incomplete, inaccurate and even misleading statements about the effectiveness of autism treatments. It does so by rejecting an evidence based approach to treating autism. It states that there are many approaches to treating autism without informing the public forthrightly that only Applied Behavior Analysis is supported by a large body of evidence supporting its effectiveness.
In More than one approach to autism the Autism Society Canada has failed, once again, to help Canadians evaluate the evidence supporting ABA as an autism intervention and, as the article title illustrates, helps mislead Canadians into thinking that all autism interventions are created equal. That no single autism intervention is better than any other. Nothing could be further from the truth. In that article Kathleen Provost, ASC President, is reported and quoted as follows:
"What we have the most researcher and information on is behaviour therapy," Provost said.
The society does not endorse any method.
"Some of it is new and we don't have enough information," Provost said. "We leave it up to the parents to make decisions."
There is no unanimity amongst "experts" about the best ways of dealing with autism, or any other issue, in any other field, for that matter. Most noticeable in opposing ABA as an autism intervention is the Montreal neuroscience community which dominates the Canadian Institutes for Health Research. (Anti-ABA advocate, Dr Laurent Mottron, of the Psychiatry Department of the Hopital Riviere-Des-Prairies was a key note speaker at the CIHR's November 2007 Autism Symposium which itself had to be rescheduled to ensure that known ABA advocates would be excluded from representing any of the provincial autism "communities"). There is, however, a clear consensus amongst experts about the best ways of dealing with autism and that consensus clearly points to ABA as the most effective evidence based intervention for dealing with autism.
Evidence Based-Medicine
To properly understand that consensus it is important to understand a point not often mentioned by the Autism Society Canada, or the CIHR for that matter, the concept of evidence based-medicine:
"Evidence-based medicine is the conscientious, explicit and judicious use of current best evidence in making decisions about the care of individual patients. The practice of evidence-based medicine means integrating individual clinical expertise with the best available external clinical evidence from systematic research. By individual clinical expertise we mean the proficiency and judgement that individual clinicians acquire through clinical experience and clinical practice. Increased expertise is reflected in many ways, but especially in more effective and efficient diagnosis and in the more thoughtful identification and compassionate use of individual patients' predicaments, rights, and preferences in making clinical decisi ons about their care. By best available external clinical evidence we mean clinically relevant research, often from the basic sciences of medicine, but especially from patient centred clinical research into the accuracy and precision of diagnostic tests (including the clinical examination), the power of prognostic markers, and the efficacy and safety of therapeutic, rehabilitative, and preventive regimens. External clinical evidence both invalidates previously accepted diagnostic tests and treatments and replaces them with new ones that are more powerful, more accurate, more efficacious, and safer.
Good doctors use both individual clinical expertise and the best available external evidence, and neither alone is enough. Without clinical expertise, practice risks becoming tyrannised by evidence, for even excellent external evidence may be inapplicabl e to or inappropriate for an individual patient. Without current best evidence, practice risks becoming rapidly out of date, to the detriment of patients."
Center for Evidence-Based Medicine (CEBM) and the British Medical Journal, 13th January 1996 (BMJ 1996; 312: 71-2)
The CEBM also refers readers to the Wikipedia entry on Evidence Based-Medicine:
Evidence-based medicine (EBM) aims to apply evidence gained from the scientific method to certain parts of medical practice. It seeks to assess the quality of evidence[1] relevant to the risks and benefits of treatments (including lack of treatment). According to the Centre for Evidence-Based Medicine, "Evidence-based medicine is the conscientious, explicit and judicious use of current best evidence in making decisions about the care of individual patients."[2]
EBM recognizes that many aspects of medical care depend on individual factors such as quality and value-of-life judgments, which are only partially subject to scientific methods. EBM, however, seeks to clarify those parts of medical practice that are in principle subject to scientific methods and to apply these methods to ensure the best prediction of outcomes in medical treatment, even as debate about which outcomes are desirable continues.
Practicing evidence-based medicine requires clinical expertise, but also expertise in retrieving, interpreting, and applying the results of scientific studies and in communicating the risks and benefits of different courses of action to patients.
....
Qualification of evidence
Evidence-based medicine categorizes different types of clinical evidence and ranks them according to the strength of their freedom from the various biases that beset medical research. For example, the strongest evidence for therapeutic interventions is provided by systematic review of randomized, double-blind, placebo-controlled trials involving a homogeneous patient population and medical condition. In contrast, patient testimonials, case reports, and even expert opinion have little value as proof because of the placebo effect, the biases inherent in observation and reporting of cases, difficulties in ascertaining who is an expert, and more.
Systems to stratify evidence by quality have been developed, such as this one by the U.S. Preventive Services Task Force for ranking evidence about the effectiveness of treatments or screening:
* Level I: Evidence obtained from at least one properly designed randomized controlled trial.
* Level II-1: Evidence obtained from well-designed controlled trials without randomization.
* Level II-2: Evidence obtained from well-designed cohort or case-control analytic studies, preferably from more than one center or research group.
* Level II-3: Evidence obtained from multiple time series with or without the intervention. Dramatic results in uncontrolled trials might also be regarded as this type of evidence.
* Level III: Opinions of respected authorities, based on clinical experience, descriptive studies, or reports of expert committees.
The UK National Health Service uses a similar system with categories labeled A, B, C, and D. The above Levels are only appropriate for treatment or interventions; different types of research are required for assessing diagnostic accuracy or natural history and prognosis, and hence different "levels" are required. For example, the Oxford Centre for Evidence-based Medicine suggests levels of evidence (LOE) according to the study designs and critical appraisal of prevention, diagnosis, prognosis, therapy, and harm studies:[9]
* Level A: Consistent Randomised Controlled Clinical Trial, cohort study, all or none (see note below),clinical decision rule validated in different populations.
* Level B: Consistent Retrospective Cohort, Exploratory Cohort, Ecological Study, Outcomes Research, case-control study; or extrapolations from level A studies.
* Level C: Case-series study or extrapolations from level B studies.
* Level D: Expert opinion without explicit critical appraisal, or based on physiology, bench research or first principles.
Evidence Based-Medicine and Autism Interventions
Autism has been plagued by a host of "alternative" treatments and interventions including some as whacky as "swimming with dolphins"; the notion that somehow swimming in close proximity to these intelligent but still wild and powerful sea creatures somehow has therapeutic value for autistic children. Facilitated communication in which a therapist aids non-verbal autistic children in communicating through a variety of assisted communication technologies has caused actual harm as seen very recently in Oakland County Michigan where a family was torn apart when the parents of autistic children were wrongully charged with abuse based on a therapists Facilitated Communication interpretations of the autistic daughter's responses. The interpretations were exposed as nonsense at trial when the same process elicited answers such as these to questions posed to the daughter:
Q: What color is your sweater?
A: JIBHJIH
Q: What are you holding in your hand right now?
A: I AM 14
In Children with autism deserve evidence-based intervention, The evidence for behavioural therapy, MJA 2003; 178 (9): 424-425, Jennifer J Couper and Amanda J Sampson, reviewed some of the evidence in support of the efficacy of behavioral interventions for autism. The authors stressed the importance of an evidence based approach to autism interventions:
While ineffective therapies may be harmless, they waste parents' money and the child's valuable therapy time. Furthermore, the delay in implementing effective treatment may compromise the child's outcome.
Couper and Sampson reviewed the evidence at that time (2003) in relation to behavioral treatment for autism:
the early intervention that has been subjected to the most rigorous assessment is behavioural intervention. There is now definite evidence that behavioural intervention improves cognitive, communication, adaptive and social skills in young children with autism. In 1987, Lovaas showed apparent recovery, persisting into adolescence, in nine of 19 young children who received an intensive home-based intervention based on applied behavioural analysis, a scientific method of reinforcing adaptive and reducing maladaptive behaviours.5,6 Subsequent studies also showed that behavioural intervention caused significant, albeit somewhat lesser, gains.7-11 This has modified the orthodox view that autism is always a severe, lifelong disability. Criticisms of the adequacy of the design and power of these studies are being addressed by the multisite Lovaas replication Early Autism Project. The first US site has released data (Wisconsin Early Autism Project).12 Again, after three to four years of intensive applied behavioural analysis intervention, about half the preschool children with autism acquired near-normal functioning in language, performance IQ and adaptability. Ninety-two per cent of intervention children acquired some language. Control children who received special education showed no gains in IQ or adaptability.12
Why is intensive applied behavioural analysis intervention more effective than special education for children with autism? This can not be simply explained by the intensity of these programs (30–40 hours per week). Children in a school-based Scandinavian study who received behavioural intervention gained an average of 25 language IQ points in the first year of the intervention, with improvements in performance IQ, communication and adaptability. On all scores, they surpassed control children who received special education according to best practice for autism, and the same intensity, duration and supervision of therapy.13
Autism Treatment Consensus - God Bless America
Contrary to Kathleen Provost's, and the ASC's, statements, there IS a consensus on the best way to "deal with" autism. That consensus has been clearly articulated in a number of reviews of autism treatment effectiveness by responsible, respected American authorities. Thankfully the internet ensures that Canadian parents are not dependent on a sham Autism Symposium, the self interested dictates of some members of the Montreal neuroscience community, or the misleading statements of timid ASC representatives. We can read for ourselves what more credible authorities have concluded.
The American Academy of Pediatrics - Management of Children with Autism Spectrum Disorders 2007
The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have
been significantly better than those of children in control groups.31–40
No other intervention reviewed by the AAP approached ABA in the quantity or the quality of evidence in support of its effectiveness as an ABA intervention.
New York State Department of Health - Clinical Practice Guidelines - Report of the Recommendations Autism/Pervasive Developmental Disorders 2005 (rev ed)
Intervention Methods
Intensive Behavioral and Educational Intervention Programs
Summary Conclusions
Intensive behavioral and educational intervention programs involve systematic use of behavioral teaching techniques and intervention procedures, intensive direct instruction by the therapist, and extensive parent training and support.
* Articles screened for this topic: The literature search found 232 articles that reported using behavioral and educational approaches in children with autism as well as 68 articles from a comprehensive review article on single-subject design studies.
* Articles meeting criteria for evidence: 5
Several studies done by independent groups of researchers have evaluated the use of intensive behavioral intervention programs for young children with autism. The four studies that met criteria for evidence about efficacy all compared groups of young children with autism who received either an intensive behavioral intervention, a comparison intervention, or no intervention. In all four of the studies reviewed, groups that received the intensive behavioral intervention showed significant functional improvements compared to the control groups.
While none of the four studies used random assignment of subjects to groups, there did not appear to be any evidence of important bias in group assignment. Within each study, the groups receiving different interventions had equivalent subject characteristics. Furthermore, all studies showed similar and consistent results.
Since intensive behavioral programs appear to be effective in young children with autism, it is recommended that principles of applied behavior analysis and behavioral intervention strategies be included as an important element of any intervention program.
It is recommended that intensive behavioral programs include a minimum of 20 hours per week of direct instruction by the therapist. The precise number of hours of behavioral intervention may vary depending on a variety of child and family characteristics. Considerations include age, severity of autistic symptoms, rate of progress, other health considerations, tolerance of the child for the intervention, and family participation. It is recommended that the number of hours be periodically reviewed and revised when necessary. Monitoring of progress may lead to a conclusion that hours need to be increased or decreased.
It is recommended that all professionals and paraprofessionals providing therapy to the child as part of an intensive behavioral program receive regular supervision from a qualified professional.
It is important that parents be included as integral members of the intervention team. It is recommended that parents be trained in behavioral techniques and be encouraged to provide additional hours of instruction to the child. It is also recommended that training of parents in behavioral methods for interacting with their child be extensive and ongoing, and that it include regular consultation with the primary therapist.
Although some of the intensive behavioral intervention programs that were effective included use of physical aversives (such as a slap on the thigh), other programs reported good outcomes without the use of any physical aversives. The panel does not recommend the use of physical aversives, especially given the small physical size and vulnerability of young children in the age group from birth to age three years.
None of the other interventions reviewed by the NYSDOH approached ABA as an evidence based effective intervention for autism.
Report of the MADSEC (Maine Administrators of Services for Children with Disabilities) Task Force Report 2000 (rev ed)
Over the past 30 years, several thousand published research studies have documented the effectiveness of ABA across a wide range of:
• populations (children and adults with mental illness, developmental disabilities and learning disorders)
• interventionists (parents, teachers and staff)
• settings (schools, homes, institutions, group homes, hospitals and business offices), and
• behaviors (language; social, academic, leisure and functional life skills; aggression, selfinjury,
oppositional and stereotyped behaviors)
…
The effectiveness of ABA-based interventions with persons with autism is well documented, with current research replicating already-proven methods and further developing the field.
Documentation of the efficacy of ABA-based interventions with persons with autism emerged in the 1960s, with comprehensive evaluations beginning in the early 1970s. Hingtgen & Bryson (1972) reviewed over 400 research articles pertinent to the field of autism that were published between 1964 and 1970. They concluded that behaviorally-based interventions demonstrated the most consistent results. In a follow-up study, DeMeyer, Hingtgen & Jackson (1981) reviewed over 1,100 additional studies that appeared in the 1970s. They examined studies that included behaviorally-based interventions as well as interventions based upon a wide range of theoretical foundations. Following a comprehensive review of these studies, DeMeyer, Hingtgen & Jackson (1982) concluded “. . .the overwhelming evidence strongly suggest that the treatment of choice for maximal expansion of the autistic child’s behavioral repertoire is a systematic behavioral education program, involving as many child contact hours as possible, and using therapists (including parents) who have been trained in the behavioral techniques” (p.435).
Support of the consistent effectiveness and broad-based application of ABA methods with persons with autism is found in hundreds of additional published reports.
Baglio, Benavidiz, Compton, et al (1996) reviewed 251 studies from 1980 to 1995 that reported on the efficacy of behaviorally-based interventions with persons with autism. Baglio, et al (1996) concluded that since 1980, research on behavioral treatment of autistic children has become increasingly sophisticated and encompassing, and that interventions based upon ABA have consistentlyresulted in positive behavioral outcomes. In their review, categories of target behaviors included aberrant behaviors (ie self injury, aggression), language (ie receptive and expressive skills, augmentative communication), daily living skills (self-care, domestic skills), community living skills (vocational, public transportation and shopping skills), academics (reading, math, spelling, written language), and social skills (reciprocal social interactions, age-appropriate social skills).
In 1987, Lovaas published his report of research conducted with 38 autistic children using methods of applied behavior analysis 40 hours per week. Treatment occurred in the home and school setting. After the first two years, some of the children in the treatment group were able to enter kindergarten with assistance of only 10 hours of discrete trial training per week, and required only minimal assistance while completing first grade. Others, those who did not progress to independent school functioning early in treatment, continued in 40 hours per week of treatment for up to 6 years. All of the children in the study were re-evaluated between the ages of six and seven by independent evaluators who were blind as to whether the child had been in the treatment or control groups. There were several significant findings:
1) In the treatment group, 47% passed “normal” first grade and scored average or above on IQ tests. Of the control groups, only one child had a normal first grade placement and average IQ.
2) Eight of the remaining children in the treatment group were successful in a language disordered classroom and scored a mean IQ of 70 (range = 56-95). Of the control groups, 18 students were in a language disordered class (mean IQ = 70).
3) Two students in the treatment group were in a class for autistic or retarded children and scored in the profound MR range. By comparison, 21 of the control students were in autistic/MR classes, with a mean IQ of 40.
4) In contrast to the treatment group which showed significant gains in tested IQ, the control groups’ mean IQ did not improve. The mean post-treatment IQ was 83.3 for the treatment group, while only 53.3 for the control groups.
In 1993, McEachin, et al investigated the nine students who achieved the best
outcomes in the 1987 Lovaas study. After a thorough evaluation of adaptive functioning, IQ and personality conducted by professionals blind as to the child’s treatment status, evaluators could not distinguish treatment subjects from those who were not. Subsequent to the work of Lovaas and his associates, a number of investigators have addressed outcomes from intensive intervention programs for children with autism.
For example, the May Institute reported outcomes on 14 children with autism who received 15 - 20 hours of discrete trial training (Anderson, et al, 1987). While results were not as striking as those reported by Lovaas, significant gains were reported which exceeded those obtained in more traditional treatment paradigms. Similarly, Sheinkopf and Siegel (1998) have recently reported on interventions based upon discrete trial training which resulted in significant gains in the treated children’s’ IQ, as well as a reduction in the symptoms of autism. It should be noted that subjects in the May and Sheinkopf and Siegel studies were given a far less intense program than those of the Lovaas study, which may have implications regarding the impact of intensity on the effectiveness of treatment.
...
Conclusions
There is a wealth of validated and peer-reviewed studies supporting the efficacy of ABA methods to improve and sustain socially significant behaviors in every domain, in individuals with autism. Importantly, results reported include “meaningful” outcomes such as increased social skills, communication skills academic performance, and overall cognitive functioning.
These reflect clinically-significant quality of life improvements. While studies varied as to the magnitude of gains, all have demonstrated long term retention of gains made.
Mental Health: A Report of the US Surgeon General 1999
Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior. A well-designed study of a psychosocial intervention was carried out by Lovaas and colleagues (Lovaas, 1987; McEachin et al., 1993). Nineteen children with autism were treated intensively with behavior therapy for 2 years and compared with two control groups. Followup of the experimental group in first grade, in late childhood, and in adolescence found that nearly half the experimental group but almost none of the children in the matched control group were able to participate in regular schooling. Up to this point, a number of other research groups have provided at least a partial replication of the Lovaas model (see Rogers, 1998).
Consensus and Fully Informed Choices
The above are some of the leading statements by credible agencies that have reviewed the evidence bases in support of various autism interventions. No other intervention has anywhere near the same evidence in support of its efficacy as documented by these credible American agencies. Contrary to the unsubstantiated statement by Kathleen Provost there is in fact a clear consensus that ABA is the treatment of choice for autism.
If Kathleen Provost, and the Autism Society Canada, wish to exercise their information role responsibly they should make this clear to the public. Parents of newly diagnosed autistic children should be told that they might be gambling their child's precious development time, and their future development potential by forgoing ABA in favor of "feel good" unproven alternatives. In failing to do so they are failing autistic children in Canada.