Facing Autism in New Brunswick

Autism Poser - Conservative MP Colin Carrie's Photo Op Support For Autistic Children

2008-07-24T06:51:00.018-03:00

""I'm here today really as a thank you," Mr. Carrie told a small gathering at the Whitby Library Celebration Square. "A thank you to Jonathan for his commitment, for not only these kids but their families. To raise awareness, there's so much to be done for these kids. My son is a wonderful musician, a wonderful magician and without having the correct diagnosis and treatment, these kids can be lost."

Oshawa MP Colin Carrie (Conservative) greeting Jonathan Howard, newsdurhamregion.ca

Oshawa Conservative MP Colin Carrie greeted autism Run the Dream runner Jonathan Howard recently as he ran through Durham region in Ontario. Autistic children in Ontario are particularly hard hit by lack of treatment with many of them languishing on waiting lists and and autism agencies cutting back on treatment services for lack of funding. Mr. Carrie, as the above quote indicates, has a personal interest in autism disorders, having a son with Aspergers who, again judging by the above quote, appears to be quite high functioning.

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

autism

Autistic Teen Missing In Saskatchewan

2008-07-22T06:39:00.006-03:00

From the Saskatoon StarPhoenix:

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.

autism

Missing Autistic Man Found Wandering In Australian Park

2008-07-21T05:16:00.003-03:00

The Canberra Times reports that a 22 year old autistic man who ran away while walking with two other men to the tourist lookout inside the Goolman Conservation Park near Ipswich has been found safe and well with only a few bruises and scrapes.

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.

autism

Ontario Failing Autistic Children - Canada Needs Medicare for Autism NOW

2008-07-20T16:26:00.004-03:00

More proof that Canada needs Medicare coverage for Autism NOW can be found in the CP/Globe & Mail article Agencies decry Ontario's funding of child autism treatment by Maria Babbage. From Northern Ontario to Toronto and London non-profit agencies are underfunded and forced to cut services. Autistic children are losing out. Children are continuing to wait for a place on the lists to receive treatment:

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.”

autism

Autistic Teen Missing in British Columbia

2008-07-20T09:38:00.004-03:00

And still another missing autistic person, this time 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.

autism

Mother Upset Over Disappearance of Autistic Son from British Hospital

2008-07-20T08:46:00.008-03:00

In WOODFORD GRN: Mother calls for inquiry into disappearance of Autistic son the Guardian reports that Lash Wilson, is calling for an inquiry into the disappearance from Goodmayes Hospital of her autistic son, James Wilson, who was left unsupervised while he went to a shop. Her son was found four days later in Colchester, Essex. Lash Wilson accuses the hospital of "appalling negligence". Ivan Corea of the UK Autism Foundation, which has joined in the call for an inquiry, also calls on government to protect the vulnerable:

" 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 "

In case anyone hasn't noticed yet many autistic people are at risk of wandering away from camps, homes, hospitals and residential centers. This autism reality should not be obscured by feel good rhetoric about the joy of autism. Steps should be taken to protect, and provide security for, those autistic people who need help.

autism

O Canada Conor Loves His Lawn Chair

2008-07-19T19:04:00.011-03:00

We have to keep a close watch on Conor. He can not be left unattended or he could wander off as he did on a previous occasion. No one wants to be attended at all times though and while it is easy to give him some solitude in a room in the house it is more difficult outdoors and Conor loves to be outdoors. We let him go to the front and side steps but keep a constant watch.

The back yard offers more security and we can leave Conor there by himself (still checking frequently through a window). Conor loves the backyard and he loves to relax in his Canada flag folding lawn chair. A great buy for $9.

autism

Run the Dream to Visit Conor's Birthplace Burlington

2008-07-19T08:49:00.005-03:00

I couldn't help noticing that Jonathan Howard's autism awareness raising Run the Dream will soon be heading to Burlington, Ontario. Conor and his older brother were both born at the Joseph Brant Memorial Hospital when we lived in Burlington (and Dad did the 4-5 hours commuting to and from the Eaton Centre in Toronto each day).

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

Autism Zero to Autism Hero - Illinois Governor Blagojevich

2008-07-19T07:22:00.006-03:00

In an August 2007 comment I had referred to llinois Governor Rod Blagojevich as an autism zero. Because of his recent actions I now have to retreat from that description. Perhaps I did not understand the complexities of Illinois politics in the first place, which I admit is probably the case, but regardless, Governor Blagojevich has gone from autism zero to autism hero.

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.

autism

Autism's Fool Of The Year

2008-07-18T16:09:00.007-03:00

Yeah, when I first read of Mike Savage 's remarks about autistic children being frauds I was angry but the flash of temper passed quickly, very quickly, when I realized that Savage had simply exposed himself as a blowhard, a windbag with no knowledge whatsoever of what he was screaming about. It is hard to stay angry at the guy while I am still laughing at him.

autism

North Bay Needs A National Autism Strategy

2008-07-18T12:18:00.005-03:00

In Autistic kids waiting for help Local agency can’t operate at its maximum capacity..... and families are suffering Brandi Cramer reports on North Bay's autism desperation. Early intervention, particularly in the 2 to 5 period, is acknowledged by all save the most rabid anti-cure ideologues as a critically important window of opportunity in treating autism. In North Bay Ontario Shannon Berger's three year old son was diagnosed with severe autism in September and has been on a waiting list for intense behavioral intervention treatment since. The local agency is running a deficit and has been unable to take on new clients. The Province of Ontario has increased funding in the region by100% in the last five years but the agency is still over strapped and the Province says agencies have to manage their budgets.

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.

autism

Missing Autistic Teen Found Safe In Minnesota

2008-07-17T16:47:00.006-03:00

A 17 year old autistic girl who went missing in St. Paul Minnesota has been found safe in Eagan Thursday morning about 24 hours after she left her home early Wednesday. The police do not know where the young woman stayed over night. Kim Stagliano at Age of Autism blogged this story under the appropriately sarcastic title More Joy of Autism: Another Lost Child.

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

Autism Mother Marni Wachs Discusses Neurodiversity

2008-07-17T06:45:00.005-03:00

Note: I received the following thoughtful comment on autism and neurodiversity from Marni Wachs, an autism mother, and, with her permission, I am posting it here as a "guest blogger" commentary.

Harold Doherty

Re: Jim Sinclair' s Work "DON'T MOURN FOR US: a message for parents of autistic children"

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

autism

Autism Learning Quotes

2008-07-13T18:12:00.005-03:00

"We're showing, on the one hand, that autism seems to have a large genetic component. But, the genes that are involved are actually those that are involved in responding to the environment and learning."

"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

autism

ABA Effectiveness and Autism's On Off Switches

2008-07-13T09:19:00.011-03:00

The latest explosion in the Autism Knowledge Revolution is the much ballyhoo'd (Scientific American, Washington Post, Times Online, TIME etc.) study in the current issue of Science. The fuss and the hoopla is well deserved. The results suggest possible cures, appear to explain the effectiveness of ABA as an early learning intervention, and demonstrate that both genes and environment are probably involved in causing autism disorders. And as stated in the abstract the study appears to have identified a mechanism common to seemingly diverse autism mutations:

"The largest deletions implicated genes, including PCDH10 (protocadherin10) and DIA1 (deleted in autism1, or c3orf58), whose level ofexpression changes in response to neuronal activity, a markerof genes involved in synaptic changes that underlie learning.A subset of genes, including NHE9 (Na⁺/H⁺ exchanger 9), showedadditional potential mutations in patients with unrelated parents.Our findings highlight the utility of "homozygosity mapping"in heterogeneous disorders like autism but also suggest thatdefective regulation of gene expression after neural activitymay 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."

This is very bad news for anti-ABA advocates like Michelle Dawson and Dr. Laurent Mottron and the Neurodiversity ideologues at the "Autism" Hub. This study clearly supports the effectiveness of ABA as an early learning intervention as stated in Scientific American by study co-author Christopher Walsh, chief of genetics at Children's Hospital Boston:

"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."

autism

Conor and Dad Relax on Saturday Morning

2008-07-12T13:06:00.008-03:00

It was kind of warm today so we decided against anything too strenuous. And we still have the pool to look forward to tonight so Conor and Dad kicked around down town and relaxed. After stopping off at my office parking lot we headed over to Read's for some refreshments and sat outdoors watching the world go by.

autism

Autism Society Canada Rejects Evidence Based Approach To Autism Treatment And Fails Autistic Children

2008-07-11T05:56:00.024-03:00

Recent statements by current Autism Society Canada President Kathleen Provost to a Montreal Gazette reporter have me asking again what the ASC actually does to help autistic Canadians? When the ASC can not even tell the Canadian public in a forthright manner what numerous American state and professional agencies have told us for years about the evidence basis supporting the effectiveness of Applied Behavior Analysis in treating autism it becomes difficult to understand the ASC's raison d'être.

For parents of autistic children there are few things more important than trying to help their autistic children overcome, to the fullest extent possible, the deficits and challenges that accompany their autistic disorders - self injurious behavior, dangerous behavior such as wandering into traffic or getting lost, lack of communication and language abilities and intellectual deficits. These are all serious challenges facing many autistic Canadians. But they do not receive accurate information about the state of autism treatment from the ASC.

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:

Kathleen Provost of Autism Society Canada noted a lack of consensus among experts about the best ways of dealing with the condition.

"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.

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Scientific American - Investigating the Environmental Origins of Autism

2008-07-10T03:09:00.005-03:00

In Investigating the Environmental Origins of Autism Scientific American discusses whether environmental factors might be contributing factors involved in the soaring rates of autism. While the DSM diagnostic definition changes in 1994 obviously play a significant role in increasing the number of autism diagnoses it is far from accepted that they account for all or most of the incredible rise. Not everyone is prepared to acceptl without questioning; the soothing words of anthropologist Roy Grinker that there is no autism epidemic; that definition changes and social factors offer a complete explanation for the incredible rise in autism diagnoses.

Scientific American reviews, without offering conclusions, the various environmental factors that might contribute to cases of autism from the ever contentious vaccine issue to environmental mercury, pesticides, flame retardants, chemicals in common cleaning products and even greater reliance on anti-biotics. The increased attention of researchers to possible environmental causes of autism is noted. The article mentions the possibility that autism and other conditions present in children today might be a result of "environmental assault":

“Whatever triggered this current autism epidemic...autistic kids clearly need extra protection from further environmental assault,”

- nonprofit group Healthy Child Healthy World

For far too long proponents of theories of global warming were mocked even while people like US Vice President Dick Cheney were editing out of government health agency statements scientific testimony of the health effects of global warming.

It is time we investigated possible environmental causes of autism and other possible harm to our children arising from environmental decay.

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The Challenge of Autism: Hope Tempered With Reality

2008-07-08T06:31:00.008-03:00

Noah Gates works with Paula Williams, an in-home therapist
who helps to reinforce what Noah has learned in school.

(Photo and caption from the Dickinson Press)

The MSM and the internet are rife with hope filled autism stories and neurodiversity blogs about the joy and beauty of autism. If you read enough of the "Autism" Hub bloggers you could come to forget that Autistic Disorder is a serious neurological disorder. Hope and joy are powerful sales tools. Everyone, including parents of children with autistic disorders, needs hope. A problem arises though when hope obscures or even displaces reality.

You can, and should, temper hope with awareness of the challenges that your autistic child faces. You should seek, to the fullest extent possible, and with the assistance of responsible, well informed professional advisers, to obtain treatment, therapy and education to help your autistic children overcome the deficits of their autism disorder.

In The Challenge of Autism The Dickinson Press tells the stories of Nick and Kari Gates and their sons, Noah, 5, and Benjamin, 3. The article tells of Noah's strengths AND his challenges. The Gates are an excellent example of well grounded parents, loving both of their children, who don' t hesitate to help their autistic son. Noah has a number of deficits such as public tantrums, noise and taste sensitivities. The Gates do not give up. They obtain therapy for Noah, including paying for a therapist Paula Williams, to come to their home to provide Applied Behavior Analysis . As for parents who might have read some of the misleading descriptions of ABA floating around the internet you can see that Ms William is not a stern looking task master and Noah does not appear to be suffering any discomfort. And as Nick Gates said in the The Challenge of Autism "When he’s with Paula, he knows its time to work. He does very well with her.”

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The Two Autism Faces of Greg Thompson

2008-07-06T12:18:00.016-03:00

When it comes to federal financing of autism treatment for Canadians with autism Conservative MP Greg Thompson, Southwest, New Brunswick has presented two decidedly different faces.

FACE # 1 - Opposition MP Greg Thompson

House of Commons, Hansard, Wed. Sept. 28, 2005.

Statement by Members

Autism

Mr. Greg Thompson (New Brunswick Southwest, CPC):

Mr.Speaker, today along with other members of the House and parents of autistic children, I attended a rally on Parliament Hill urging the federal government to provide financial support to cover the cost of treatment for every child diagnosed with autism.

Autism rates are on the rise in Canada. This neurological disorder affects 1 in every 195 of our children.

Therapy which has been credited in helping children overcome the effects of autism can cost a family up to $60,000 a year. These families and children need our support and I urge the federal government to take the steps necessary to address this important issue.

FACE # 2 - Government MP & Cabinet Minister Greg Thompson

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

Thompson (New Brunswick Southwest)

There it is. On September 28 2005 Greg Thompson, wearing Autism Face # 1, sitting as an opposition MP, rose in the House of Commons, not at a local backyard Bar-B-Q or in a beer drenched tavern, but in the House of Commons, to urge the federal government to address the important issue of financing treatment for autistic children in Canada. Then 15 months later, on February 21, 2007, wearing Autism Face # 2, now sitting as a MP and Cabinet Minister of the governing Conservative Party he 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. Thompson had previously urged a different federal government to do?

How to explain the Two Autism Faces of Conservative MP Southwest, New Brunswick, Greg Thompson? Was he being shallow and insincere when he wore Autism Face # 1, using the plight of autistic children and their families for political purposes? Or did he simply lack the courage of his convictions; was he afraid to stand up to Conservative Prime Minister Harper when he donned Autism Face #2 and voted against Bill C-304 which would have provided for federal government funding of autism treatment?

Only Greg Thompson knows for sure.

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Ottawa's Unfinished Autism Business

2008-07-05T15:10:00.009-03:00

Autism should not be a partisan issue.

Here in New Brunswick progress has been made under the former Conservative government of Bernard Lord and the current Liberal government of Shawn Graham. It is more difficult to say the same of the situation in Ottawa where the separatist Bloc Québécois and the Conservative government of Stephen Harper combined to defeat Charlottetown Liberal MP Shawn Murphy's Private Members Bill C-304 which would have provided a real National Autism Treatment Strategy to ensure adequate financing and ABA/IEBI treatment for Canada's autistic children whether they had the good fortune to reside in a province sitting on large oil reserves or not.

The rationale for defeating Bill C-304 offered by the Harper Conservative party - that health care is a matter within provincial legislative jurisdiction - ignores the reality that we already have federal health care legislation - the very Canada Health Act that Bill C-304 would have amended. If the Canada Health Act itself can exist, whether by some constitutional basis for federal health care competency; or by the cooperation, compassion and common sense of Canadians then so too can an amendment to that Act.

Even weaker is the argument, often advanced by the Harper government's offical autism dad, Mike Lake, that:

If this Bill were to pass, autism would be the one and only disorder or disease named in the Canada Health Act. Cancer is not named. Neither is diabetes or cardiovascular disease. Why autism and not these? Why not Down Syndrome? Why not Schizophrenia?

Under the Canada Health Act, the provinces are clearly responsible for decisions on which medical treatments they will fund. If we are to maintain the integrity of the Act, only the provinces can make those decisions.

To answer the first question the fact that autism would be the first to be named should be irrelevant. The need for a national effort to address Canada's autism crisis is clear. The Conservative government acknowledged that fact when it adopted Fredericton MP Andy Scott' s motion calling for a National Autism Strategy. While recognizing the need for such a strategy the Harper government has steadfastly refused to put any teeth in it. If the need for a National Strategy exists to address other disorders and diseases they can be looked at on case by case basis. There is no reason not to name autism now because other disorders and diseases may also have to be considered. Each can be examined on a case by case basis as required.

Provinces across Canada have begun financing, to the extent they are capable, the ABA that has been acknowledged, most recently (October 29, 2007) by the American Academy of Pediatrics, as the most evidence based effective treatment for autism:

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

Even Mr Lake has acknowledged the effectiveness of ABA in treating autism; he just doesn't seem to understand that not all provinces have the finances to properly fund ABA for all autistic children:

In my opinion, it is completely unacceptable for any province not to fund Applied Behavioural Analysis (ABA) for those who need it. If voters feel as strongly as I do about this, they must let their provincial governments know and then hold them accountable at election time.

As for the integrity of the Act what is that? An Act is established to give effect to the will of the people through their elected representatives on a given matter. They can change the scheme, structure, or "integrity" of the Act if that reflects the will of the people at that time. If Canadians want to provide financing for ABA treatment for autism, and judging by the number of provinces that provide some level of ABA treatment funding they do, then the only challenge for those provinces not as well off, is to find the money to adequately fund the treatment.

The last I checked the federal government has no qualms about taking money, in the form of taxes, from the pockets of Canadian families wherever they live. They should have no qualms about spending some of that money to help provide effective ABA treatment for persons with autism.

Mike Lake's autistic son deserves the opportunity to access the ABA treatment funded by oil rich Alberta. So too does Joe Smith's son in PEI, Jacques LeBlanc's son in Quebec and Joe Kowalchuck's son in Saskatchewan. It is long past time that the Harper government ceased making a mockery of its commitment to a National Autism Strategy and amended the Canada Health Act as set out in Shawn Murphy's Bill C-304. There is no good reason not to.

C-304

First Session, Thirty-ninth Parliament,
55 Elizabeth II, 2006

HOUSE OF COMMONS OF CANADA

BILL C-304

_____________________________________________

FIRST READING, MAY 17, 2006

_____________________________________________

MR. MURPHY (Charlottetown)

1st Session, 39th Parliament,
55 Elizabeth II, 2006

HOUSE OF COMMONS OF CANADA

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

Her Majesty, by and with the advice and
consent of the Senate and House of Commons
of Canada, enacts as follows:

SHORT TITLE

1. This Act may be cited as the National
Strategy for the Treatment of Autism Act.

NATIONAL CONFERENCE

2. The Minister of Health shall, before
December 31, 2006, convene a conference of
all provincial and territorial ministers responsible
for health for the purpose of working
together to develop a national strategy for the
treatment of autism. The Minister shall, before
December 31, 2007, table a report in both
Houses of Parliament specifying a plan of action
developed in collaboration with the provincial
and territorial ministers for the purpose of
implementing that strategy.

AMENDMENTS TO THE CANADA
HEALTH ACT

3. Section 2 of the Canada Health Act is
renumbered as subsection 2(1) and is
amended by adding the following:

(2) For the purposes of this Act, services
that are medically necessary or required under
this Act include Applied Behavioural Analysis
(ABA) and Intensive Behavioural Intervention
(IBI) for persons suffering from Autism Spectrum
Disorder.

autism