Autism Reality

Four Strong Autism Winds


Four strong winds that blow slowly
Seven seas that run high
All these things that don’t change come what may
Now our good times are all gone
And I’m bound for moving on
I’ll look for you if I’m ever back this way

Guess I’ll go out to Alberta
Weather’s good there in the Fall
Got some friends that I can go to workin’ for
Still I wish you’d change your mind
If I asked you one more time
But we’ve been thru that a hundred times or more

– Ian Tyson

Ian Tyson’s Four Strong Winds is viewed by many as Canada’s unofficial national anthem, a tale of Canadian migration to Alberta in search of work. Today Alberta continues to draw Canadians in search of work. But it is also a magnet attracting Canadian families with autistic children in search of its government funded autism treatment. In neighboring Saskatchewan meanwhile government funding for autism is virtually non-existent.

In Parliament the Scott-Stoffer private member’s motion calling for a National Autism strategy to deal with this national health crisis was passed while the Shawn Murphy bill seeking inclusion of autism treatment under medicare was defeated by the Harper Conservatives and the Bloc Quebecois on spurious jurisdictional arguments. Canada would not have a national medicare system at all if this feeble rationalization was employed consistently. Indeed why do we even have a federal Health Minister, at present Tony Clement, if the federal government has no role to play in health issues? The reality is that prior to the election of the Harper Conservatives Canadians had long recognized the need for federal provincial cooperation to address health issues of national magnitude that might be beyond the ability of smaller or poorer provinces to address.

To most Canadians the hundreds of studies documenting the effectiveness of ABA in treating autism should be enough to justify extending a federal hand to ensure that Canadians do not have to move to Alberta to seek treatment for their autistic children. To most Canadians the fact that 47-50% of autistic children can be rendered indistinguishable from their peers by school age, with intensive behavioral intervention, would be enough to justify federal involvement. For most Canadians the improvement in quality of life, the increased ability to communicate, to function in society, to avoid self injurious behavior would be compelling motivations justifying an effective national autism strategy. Since Stephen Harper is Prime Minister though a different argument, one which does not rely upon empathy or compassion, must be found – studies show that autism treatment saves governments very substantial sums of money, in reduced government services, over the life of an autistic person.

How about it Mr. Harper, how about offering a real national autism strategy to address Canada’s autism crisis? You have clearly said no. Still I wish you’d change your mind, if I asked you one more time.


Autism funding drawing parents to Alberta

Last Updated: Monday, January 16, 2006 | 9:37 AM MT

CBC News

Alberta’s coverage of an intensive therapy for children with autism is prompting some families to move to the province to receive additional care for their children.

“I used to see easily a kid a month that came to Alberta for autism services,” Calgary pediatrician Dr. Neil Cooper said. “Probably it’s been 10 years that we’ve been in this office that we’ve seen kids come from other provinces, mostly because of the funding.”

The therapy – known as intensive behavioural intervention – is time consuming and expensive, but parents like Kim and Mike Stafford say it’s worth it.

The Moose Jaw couple moved to Calgary 18 months ago because Alberta’s health care system pays for the therapy, which they say has led to a big difference in their son.

When six-year-old Trey was diagnosed with autism, a developmental disorder which can be accompanied by severe problems with social interactions and language, three years ago, it seemed he had retreated into his own world, his parents say.

However, since he’s been involved in intensive behavioural intervention, his progress has been remarkable, they say.

For example, although now Trey spends part of each morning spelling words, he could barely even say them a year ago, Kim Stafford said.

“Now he knows all the kids’ names in his class. He can write down the names, he can spell them. It’s really wonderful to see,” she added.

The treatment involves speech therapy, physiotherapy, music and games – between 20 to 30 hours per week. It costs around $60,000 per year.

The Saskatchewan Health Department would only pay for one hour a week, which the Staffords say was inadequate, so they moved to Alberta. Almost immediately, Trey began receiving the full 30 hours, the Staffords said.

Roger Carriere, executive director of the Saskatchewan Health Department’s community care branch, said the therapy is expensive and there are questions about its effectiveness. He also noted there are many other priorities competing for Saskatchewan’s health dollars.

May 31, 2007 Posted by | aba, Alberta, Applied Behavior Analysis, autism disorder, bloc quebecois, Canada Health Act, Conservative Party, Saskatchewan, Stephen Harper, Tony Clement | 1 Comment

Autism Spectrum Disorder and ABA – Living With Autism





Lexi Cota’s tutor, Sara English, coaxes her to repeat an “mmm” sound for a spoon of frosting.
(Journal Photo by Lauren Carroll)

The Winston-Salem Journal has done some excellent work on autism with this article and video Living With Autism. The article, interactive graphic and video do an excellent job of presenting the realities of life for an autitsic child and her family. It is done with a positive, but realistic, presentation of the challenges facing autistic children. And it cuts to the chase in telling parents of autistic children what they need to know. ABA based early intervention is critically important for your child’s future. These pieces also present very well the challenges faced by parents in trying to educate their children including the inadequacies of the formal education system in helping educate autistic children.

The Gordons suspected that Ross had autism when he was 6 months old, said Kristi Gordon, his mother. He never responded to people or toys, and could spend hours spinning things.

The diagnosis was confirmed a year later.

“No matter how much we thought it, it still kind of crushed us,” she said.

Others, like the Cotas, watch their seemingly typical child change into someone they don’t recognize. When she was a year old, Lexi was a charming, typical toddler, one who loved to pop out from behind doorways and say “hi!” Then, when she was about 16 months old, she began to change. She became at turns silent and withdrawn or unruly, running around and flapping her arms wildly. She was diagnosed with autism a few weeks before her third birthday.

No matter when they get the diagnosis, the message that goes with it is the same: Get help now.

Many experts say that children who are placed into therapy as soon as possible have the best chance of eventually living a relatively independent life in which they will be able to have a job, even if their social mannerisms are unconventional.

“When you see them young, and 11/2, 2 and 3, you have no way of knowing which child will respond well to intervention and which won’t. The idea is you provide intervention and treatment when they’re young,” said Dr. Kurt Klinepeter, an associate professor of pediatrics at Wake Forest University Baptist Medical Center and the medical director of Amos Cottage. Amos Cottage is affiliated with Wake Forest and offers services for children with developmental problems.

It’s difficult to tell how many children have other conditions that co-exist with the autism. About 30 percent of autistic children will have IQ scores in the normal range. Those children will have the best chance at eventually living independently, with jobs and typical lives – not just because they score well, but also because they have to be on the higher-functioning end of the autism spectrum to be able to take an IQ test at all, Klinepeter said.

The other 70 percent aren’t necessarily mentally retarded, he said. They could be more affected by the communication and social aspects of the disorder, which would make it nearly impossible to correctly administer an IQ test.

Children who are suspected of having autism usually end up at the county’s early-intervention program, either through a referral from a doctor or day-care worker, or because the parent is concerned enough to want an evaluation.

If the child is autistic, the county is in charge of providing therapy until the child turns 3, through the Children’s Development Service Agencies. Children can receive a combination of speech, occupational and physical therapies. Some also receive therapy through the ABC of NC center. It is paid for by Children’s Development Service Agencies.

Many parents want their children to receive Applied Behavior Analysis. The National Institute of Mental Health, the leading federal agency for research on mental and behavioral disorders, said that ABA has “become widely accepted as an effective treatment” in its booklet about autism. ABA is the only treatment specifically mentioned in the booklet.

http://tinyurl.com/2h5uqz

http://extras.journalnow.com/multimedia/2007/autism/autism2.wmv

http://extras.journalnow.com/multimedia/2007/autism/autism.html

May 29, 2007 Posted by | aba, Applied Behavior Analysis, autism spectrum disorders, early intervention, education | Leave a comment

Autism challenging for all

Autism challenging for all

Parents happy with province’s support, but want more.

By Tony Kiritsis

Published Thursday May 24th, 2007

Standing tall atop the jungle gym almost eye level with his father Todd, Ryan Downey paces back and forth with a smile on his face that comes and goes. Perhaps he’s unaware of the barking dogs running in the unkempt field behind him, their owner calling out commands. Or perhaps he doesn’t care, more concerned about how he will get down.

Just by looking at Ryan as he cautiously approaches the slide, toward Todd’s coaxing voice, it’s as if there’s nothing wrong. But, behind his blue eyes there’s something different about him and unlike other four-year olds his age, he can’t talk. If he could, he would probably tell you exactly what’s wrong.

Instead, he will pace around the room, his hands sometimes flapping, offering the impression he’s trying to master a one-handed clap.

At other times he rocks back and forth, his teeth biting down, slowly tearing a hole into the top right-hand shoulder of his shirt. Or he screams and cries because he’s scared and frustrated and needs to be heard.

Somewhere, in another part of the city, another lost voice is that of 22-year-old Christopher Hammel.

This docile individual can look intimidating when standing, towering at over six-feet tall. His expressionless stare can be mistaken for a look of displeasure, until he approaches you, raises his powerful hands and pats you on the shoulder.

Seated across from Christopher is his voice; his mother Karen. Like Ryan, Christopher is non-verbal. His frustration and pleasure reveal themselves through grunts, noises and the use of body language.

Ryan Downey and Christopher Hammel are only two of the multitude of children and adults in Canada who suffer from one of the many forms of autism. Autistic children face daily struggles well into adulthood, while their families fight on their behalf to provide the best possible life for their autistic children.

In Canada, roughly 1/165 people aged 0-19 have an Autism Spectrum Disorder (ASD). Adequate funding for services and the need to properly educate these children early in life are only two of the challenges that parents and the systems in place face.

“We thought it was the end of the world,” says Todd, when he and Tamara discovered Ryan was autistic.

Parents of autistic children face daily struggles that often leave them worn out. Not only must they contend with the emotional trauma, but also the financial instability.

“When your child is autistic it’s a fight you’re in for life. Some people do give up and I don’t criticize them,” says Harold Doherty, a local lawyer and autism activist.

Doherty has been fighting for better services on the part of his family, and others in the community.

Karen Hammel says she understands the strain that’s placed on the family. When she had Christopher diagnosed at the IWK Hospital in Halifax in 1986, doctors there told her she should institutionalize her son. Since then, she’s placed his needs first.

“We don’t eat out, we don’t go to movies,” says Karen. “House repairs haven’t been taken care of. We just go without things that most people don’t go without.”

Like many parents of children with disorders Todd and Tamara were in denial about Ryan’s condition. They blamed themselves for something they thought they could have prevented, when in fact they were doing everything they knew.

“We were pissed at ourselves for not picking up on it,” says Todd. “It was as if we failed as parents.” Autism is a disorder with one face but wearing multiple masks to conceal its identity.

Considered a spectrum disorder, those diagnosed fall upon a scale and are assessed based on the severity of their symptoms.

Children born with an ASD tend to avoid social interaction with other people. They lack communication skills and engage in excessive repetitive stereotypical behaviours called stimming.

Since the diagnosis the Downey’s have found support in Fredericton’s autistic community through the Autism Society of New Brunswick and Autism Intervention Services, a local centre where Ryan receives therapy.

It’s here, amidst the maze of cubicles that reminds one of an office building, where behind the grey dividers you would expect to find a middle-aged man hunched over a computer busy typing, pictures of his wife and kids pinned to the board above his desk.

Yet there are no desks, nor are there any middle-aged men hard at work behind those dividers. But there are kids back there, kids like Ryan.

Child psychologist Paul McDonnell, who diagnosed Ryan, says that therapy is by no means a cure, because the word cure demotes an absolute result. Instead, McDonnell says people will say this child will become indistinguishable from other children.

When the centre’s current location opened in May of 2006, program director Danielle Pelletier says they only anticipated 30 children but now have over 50 children receiving treatment.

Since most children are diagnosed after the age of two, it allows them three to four years of provincially funded therapy. The key to helping children with an ASD is to intervene early.

The centre practices applied behavioural analysis therapy (ABA), a repetitive process by which tasks are broken down into smaller steps. As the child learns each step he can combine them into one complete task.

In New Brunswick, pre-school aged children receive 20 hours of government funded therapy each week through the Department of Family and Community Services. Other Canadian provinces like Alberta will fund autistic children until they reach 18.

“It pretty much seems that 20 hours a week is rock bottom,” Dr. McDonnell says. “Research pretty consistently shows that over 25 hours and especially over 30 hours, will give you much better results.” Sheila Bulmer, provincial program advisor with the Early Childhood and School Based Services Branch with Family and Community Services says, “We came up with 20 hours, and obviously that’s at the lower end, but the other monies and services that children can tap into is what we call integrated daycare.” Bulmer says parent involvement at home also contributes to the child’s therapy and learning.

Although parents will do all they can to provide extra therapy and learning for their children, the bottom line is they aren’t trained therapists.

“It turns out New Brunswick is a good place to be if your child has autism, especially the Fredericton area,” says Todd. “We’ve seen serious improvement and that makes us happy.” The therapy Ryan and other children his age receive may be adequate, but more could always be done.

“You do the intensive intervention up front because that’s where you’re guaranteed to get the most improvement and the most change,” Bulmer says.

The money the Downey’s receive goes directly to Autism Intervention Services to cover an array of costs including the therapy. Yet all this money is still not enough.

Hundreds of dollars are spent on new toys for new therapies and because Ryan requires around the clock supervision, Todd has become his primary caregiver giving up his career.

“We’ve already cashed in some retirement money to help him and we’ll probably have to cash more,” says Tamara.

Early intervention is meant to aid autistic children in order they be integrated into society with the hope that someday, they will be able to live semi-independent lives.

“I’m most worried about the school system,” Todd says. “I think he’s going to be ready for school, but is the school going to be ready for him?”

Harold Doherty believes the system isn’t prepared to handle these students and changes need to be made. “The system says teachers teach and that’s it.”

Each year approximately 40-50 new students with ASD will enter the English sector school system in New Brunswick. This number is high considering last year, roughly 24 students with an autism spectrum disorder graduated or phased out of the system at age 21.

With nine Anglophone and five Francophone districts, the English and French sectors combined have approximately 900 students with ASD from kindergarten to grade 12 province wide.

Stephanie Allen-Holt, a learning specialist with the Department of Education for students with autism spectrum disorder, says over the last two years her department has been trying to increase the capacity for specialists that can work specifically and directly with autistic children.

Allen-Holt says one of the recommendations from the Liberal platform was to train teacher assistants through the University of New Brunswick’s College of Extended Learning with autism support worker training. This called for 100 trained teacher assistants each year over four years.

“What’s the cost going to be when you have a child that’s not appropriately educated? You’re putting money into teaching them pre-school and when they go to school, if that support isn’t continued, there’s actually the chance some kids could digress,” Tamara says.

New Brunswick’s Minister of Education, Kelly Lamrock says his department will begin the training as soon as possible.

“If it’s at all possible to do in September, we will, trust me. That will be the first spending order I give for the new budget year,” says Lamrock.

As parents like the Downeys fight for their son’s well-being, the outcome is to provide a better quality of life for the future. For parents like Karen this is now the fight.

“The cost down the road is immense for the government if they want to look at cost and numbers and dollars. To take care of someone who can’t independently, or somewhat independently function and become a part of society, that cost is huge. Pay now, or pay a lot later,” Tamara says.

Karen has fought to give Christopher similar if not equal opportunities in life, but says while society is accepting and including, they aren’t integrating. She has taken it upon herself to integrate her son into society.

Two afternoons every week, Christopher walks through the glass paneled doors at the Greco on Dundonald Street in Fredericton, to the greetings of fellow employees. He comes to build boxes that will end up at doors of residents in the city.

As his strong hands gently assemble the malleable puzzle like cardboard cut-out pieces, the ability to hold down a job shows with enough help, there may be nothing he can’t achieve.

“For older individuals the need is proper residential care,” says Doherty. “Unless you can care for your child, you have to place them in a group home.”

Karen has no inclination of placing her son in a home any time soon if she can help it. Parents like the Downeys hope one day they will not have to make that choice.

“Someday it would be nice if adults with autism had some type of program that would be available to them and their families,” says Pelletier. While Family and Community Services’ long-term care plan provides Christopher with a care worker and a disability pension, it’s still not enough.

“I’m currently fighting to get clinical supervision covered,” Karen says. The cost for this service is approximately $10,000 a year.

As it stands, the Department of Family and Community Services and the Department of Health and Wellness won’t cover clinical supervision because it’s considered an indirect service.

Exhausting all her governmental avenues, if a resolution isn’t achieved, Karen feels she has no alternative but to file a human rights complaint, as she believes her son is being discriminated against.

The Downey’s have wrestled and settled with a lot in a short period of time, even though they’re in the early stages of the fight for Ryan’s future.

“We’ve come to terms that this is how it’s going to be,” Todd says. “I’ve come to terms that I’m probably not going to have a career. We’ve come to terms that we aren’t having another child.”

The intervention Ryan began months ago has yielded an improvement . He has begun to interact with other children at the centre and is able to be in public spaces like the mall with minimal incidents.

Karen knows she will always be fighting for Christopher. One day she won’t be able to take care of him anymore and wonders what will happen to him in the future.

“No matter what it is you’re looking for, you always just have to keep repeating and repeating it to the government. After a while…you feel so beaten down,” Karen says.

The future for children like Ryan appears optimistic. Programs and services to aid autistic children in their youth have improved, but have a long way to go.

The future for adults like Christopher would be bleak, if it weren’t for the determination of parents like Karen, who are currently laying the groundwork for the next generation.

http://www.canadaeast.com/ce2/hereroot/index.php?paper=here

May 25, 2007 Posted by | aba, adult care, autism, Autism Connections Fredericton, Autism Society New Brunswick, education, Paul McDonnell, UNB-CEL Autism Intervention Training Program | Leave a comment

Autism & ABA- Irish Education Minister Spins Old, Flawed Argument


Minister for Education & Science, Mary Hanafin T.D.

In reading news today from Ireland I had a strong sense of deja vu. Irish Education Minister Mary Hanafin persists in rejecting calls for ABA based education for Irish students with autism. Her argument? There are several suitable forms of education that are available in Ireland. The article does not provide any quotes or indications of what these several suitable forms might be and the Minister was criticized by a professional member of her own government’s autism task force. In New Brunswick our Department of Education used similar arguments for several years to resist provision of ABA based education for autistic students for several years. ABA is heavily documented as an effective evidence based approach to educating students with autism. The mysterious “several suitable forms” other than ABA have yet to be documented.


The Minister for Education is coming under fire from a leading expert over her approach to dealing with autism.

Minister Mary Hanafin has repeatedly rejected calls from parents for the introduction of the expensive Applied Behavioural Analysis method for teaching autistic children.

Doctors say it is the most effective method, but Ms Hanafin is continuing to insist that there are several suitable forms of education that are available in Ireland.

Dr Rita Honan, a member of the department’s own task force on autism, has now come out and said that the approach advocated by Ms Hanafin has no scientific basis and ABA has been proven to be more successful than any other teaching programme.

She also says the minister’s stance makes no financial sense as the expensive ABA programme can lead to substantial savings in the long run.

http://www.belfasttelegraph.co.uk/breaking-news/ireland/article2528459.ece

May 19, 2007 Posted by | aba, Applied Behavior Analysis, autism disorder, autism education, Ireland, Mary Hanafin | Leave a comment

Good News from Ontario on Autism & Education – ABA in Ontario Schools



Good news for autistic students in Ontario. The government of Ontario is directing ALL school boards to provide Applied Behaviour Analysis to all students with autism.

TORONTO, May 17 /CNW/ – The McGuinty government is improving the learning environment for students with autism spectrum disorders by directing all school boards to provide Applied Behaviour Analysis (ABA), Education Minister Kathleen Wynne announced today.

“All students with autism deserve equal access to this vital teaching
approach that can improve their focus on individual projects and strengthen
their communication with other students in the classroom,” said Wynne.
“We are implementing our plan to ensure students with autism receive the
best education possible.”

The Ministry of Education instructed school boards today that they must
provide programs that use ABA methods to students who need it. This
directive is part of the government’s response to the recommendations of
Autism Reference Group report, Making a Difference for Students with
Autism Spectrum Disorders in Ontario Schools: From Evidence to Action,
received earlier this year.

The implementation of ABA will be supported by extensive staff training
starting with six to eight representatives, including superintendents,
principals, teachers, teaching assistants, school support staff and Special
Education Advisory Committee members, from each school board over the
next two months. This will be followed by school team training – funded
through a $1-million investment – for up to 1,400 principals, educational
assistants and teachers over the summer months.

Additionally, the government has provided a grant of $2.75 million to
the Geneva Centre for Autism. “We are very grateful for the government’s
support so we can provide further training on ABA approaches to school
staff in the fall,” said Margaret Whelan, Executive Director of the Geneva
Centre for Autism. “This investment will allow educators to help more
students with autism succeed.”

May 17, 2007 Posted by | aba, Applied Behavior Analysis, autism disorder, autism education, Dalton McGuinty, Liberal Party, Ontario, schools | 3 Comments

Autism Quotes # 1

“If a child cannot learn in the way we teach … we must teach in a way the child can learn.”

Dr. O. Ivar Lovaas

“When Jack was diagnosed we were devastated at that thought of what life might be like for him. Now he can talk. ABA is hard work, but it has opened up a whole range of opportunities for him. Life just keeps getting better.”

Charmaine Fraser, Mother of Autistic Son, Australia

So we’re choosing to tell our daughter’s story now, after being quiet about it for the last 16 months: to emphasize how important it is that this bill pass in its original form. If it seems opportunistic or self-serving, well…there’s not much I can say about that, except that things like ABA and other therapy programs would seem to be the point of insurance: to insure the well-being of these kids who otherwise would be without hope for a future.

Finally, the only thing that really gave me pause about posting this was something that was said to me about the possibility SWSNBN might read this later on in her life and be mortified. My only response to that is this: I’m not a religious person, so prayer is out of the question, but I hope beyond anything I have ever hoped in my miserable life that my daughter, at some point in the future, is able to read this blog and yell at her father about it. I want that so badly it physically hurts.”

Pete, A Perfectly Cromulent Blog, Father of Autistic Daughter, Texas

May 17, 2007 Posted by | aba, Applied Behavior Analysis, autism awareness, autism disorder, autism education, autism therapy, Lovaas | Leave a comment

Put ABA back in HB 1224 – A Perfectly Cromulent Blog

The attached excerpt and link are from Put ABA back in HB 1224 on Pete’s blog A Perfectly Cromulent Blog Pop culture related smart-assery . The article is written in the blogger’s irrevent style and is a textbook example of the need to include specific reference to ABA in legislation governing provision of health care coverage for autism. Whether it is Canada or Texas governments and lobbyists do not want legislation to require that Applied Behavior Analysis (ABA) be covered as a health care intervention for autism. Even though ABA is THE proven effective intervention for autism, even though autism reates are soaring, and even though studies document huge long term savings to governments and society ABA is still resisted while almost any other treatment for any other ailment receives coverage. Pete’s commentary is very well written, gets to the point and tells a tale of government unresponsiveness to autism which is as true of the Government of Canada as it is of the Government of Texas.

“Which is what makes the amendment to HB 1224 so maddening. After all, if I was feeling a little down in the dumps, my health plan would cheerfully cover the cost of my happy pills. If I drunkenly jawed off to Mirko “Cro Cop” Filipović in a Zagreb bar and he broke my jaw, insurance would cover the emergency room visit and my subsequent weeks of pain meds. Hell, if I was an 80-year old man having trouble getting a goddamned hard-on, insurance would cover my boner pills, but therapy to help my daughter become a functional and productive member of society and not just another ward of the state after her parents die? We can apparently fuck right off.

So we’re choosing to tell our daughter’s story now, after being quiet about it for the last 16 months: to emphasize how important it is that this bill pass in its original form. If it seems opportunistic or self-serving, well…there’s not much I can say about that, except that things like ABA and other therapy programs would seem to be the point of insurance: to insure the well-being of these kids who otherwise would be without hope for a future.

Finally, the only thing that really gave me pause about posting this was something that was said to me about the possibility SWSNBN might read this later on in her life and be mortified. My only response to that is this: I’m not a religious person, so prayer is out of the question, but I hope beyond anything I have ever hoped in my miserable life that my daughter, at some point in the future, is able to read this blog and yell at her father about it. I want that so badly it physically hurts.”

http://www.whiterose.org/pete/blog/archives/010441.html

May 13, 2007 Posted by | A Perfectly Cromulent Blog, aba, Applied Behavior Analysis, autism disorder, Autism Society Canada, Canada Health Act, government, HB 1224, legislation, Texas | Leave a comment

Autism & ABA – "Life Just Keeps Getting Better" for Jack Fraser


Dealing with it … autism sufferer Jack Fraser enjoys time with his mum Charmaine. / The Daily Telegraph

In “Autism epidemic being ignored” Sunday Telegraph, May 12, 2007, Zoe Taylor describes the autism epidemic in Australia where a recent federal government-funded review of research into autism concluded there was scientific evidence of the effectiveness of therapies including applied behaviour analysis – which draws on research dating back more than 40 years. Despite knowledge in Australia of the efficacy of ABA as an autism intervention the treatment remains underfunded, good news for those who view autism as a “joy” but bad news for families struggling to cope with the realities of autism, families trying to help their autistic children. Amongst the hardship though are stories such as those of Jack Fraser, a young autistic boy whose family has done whatever was necessary to fund ABA treatment for him, with great results for Jack.


Charmaine and Anthony Fraser had to move from Newcastle to Sydney and cash in their Super twice in order to fund ABA therapy for their son five-year-old son Jack.

The couple, from Wollstonecraft, face annual bills of around $60,000 for the treatment which includes one-on-one home therapy sessions every weekday morning and afternoon.

They have seen vast improvements in Jack, but he is unlikely to be able to attend a mainstream school so they are considering sending him to a specialist private school.

Mrs Fraser said she had no regrets about funding the therapy, but was angry there was no Government help.

She added: “When Jack was diagnosed we were devastated at that thought of what life might be like for him. Now he can talk. ABA is hard work, but it has opened up a whole range of opportunities for him. Life just keeps getting better.”

http://www.news.com.au/sundaytelegraph/story/0,,21713139-5006007,00.html

May 12, 2007 Posted by | aba, applied behaviour analysis, Australia, autism disorder, autism treatment | 1 Comment

Dear Prime Minister Harper – Autism and You; An Open Letter Asking You to Open Your Mind, Open Your Heart



Prime Minister Stephen Harper

Dear Prime Minister

I am writing to you as the father of a severely autistic 11 year old boy living in Fredericton, New Brunswick and as an autism advocate for the past 8 years here in New Brunswick. Recently I was disappointed, bitterly disappointed, by two actions by your very tightly controlled government – the rejection of MP Shawn Murphy’s motion to amend the Canada Health Act to ensure autistic children, wherever they reside in Canada, would receive government funded treatment for their autism. Canada as a nation has long ago rejected the notion that accidents of geography should determine whether Canadians receive life sustaining or life enhancing medical treatment.

The arguments about constitutional jurisdiction advanced in justification are specious and you sir, with all due respect, know that. Canada has long operated on the basis of a model of cooperative federalism which has developed many legislative tools to ensure that narrow constitutional boundaries do not impair the quality of life in this great country. I will mention no specific examples because there are far too many for this to be a serious issue of contention.

Autism is a serious neurological disorder borne by 1 in 150 Canadians by currently accepted estimates. It also impacts on the lives of parents, siblings, grandparents and other caregivers. There is no known cure but there is a widely acknowledged, evidence based treatment available, Applied Behavioural Analysis, or ABA, which is supported by literally hundreds of studies, including recent studies, which document the effectiveness of ABA in improving the IQ, the linguistic skills and comprehension, the ability to function in the real world, of children with autism. In my son’s case, even with the limited ABA therapy which was available in New Brunswick at the time because of a shortage of trained personnel, he has made tremendous gains. From a child who could only scream and tantrum he became a child who can communicate using words, who is reading, albeit at a level below his chronological age, and who in fact almost daily pulls out books on his own initiative to real aloud for his own enjoyment. This is the ABA which parents seek across Canada, the USA and the world for their autistic children.

There are those who oppose ABA based on personal preferences, outdated and ill founded misconceptions about what ABA involves and quite simply on the basis of paranoid, conspiratorial beliefs that somehow they as human beings, as functioning adults, will be deprived of their personalities if someone else’s autistic children are taught fundamental living skills by use of ABA. They make stretched and tortured arguments about ABA turning children into robots. This is nonsense as they happy joyful pictures of my son which I will provide a link for in this letter can rebut with finality. They also make disingenuous attacks on the studies which have documented ABA based gains for autistic children ignoring the fact that literally hundreds of such studies exist all showing substantial gains. Critics also focus on costs of providing ABA ignoring the studies that have shown the huge financial savings to government in reduction of service provision over the lives of autistic persons who have benefited from ABA.

I do not actually expect you to personally read this email Prime Minister. I hope though that a conscientious staffer or, through the marvel that is the internet, a family member or friend, will see fit to read this and implore you to take action on behalf of Canadians with autism. You can make a difference in the lives of 1 in 150 Canadians Prime Minister. You can make a difference in the lives of their loved ones and care givers and you can save Canadian governments enormous sums by reducing the level of services required as a result of early intensive ABA intervention.

Please open your mind Prime Minister, open your heart, and do the right thing.

Respectfully,

Harold L Doherty
Fredericton New Brunswick

May 9, 2007 Posted by | aba, Applied Behavioural Analysis, autism disorder, autism treatment, Canada Health Act, Shawn Murphy, Stephen Harper | 3 Comments

New Study Confirms EIBI Results in IQ Gains for Autistic Children


Yet another study has demonstrated the effectiveness of intensive early behavioural internvetion as both an educational AND a healh care intervention for autistic children, with signficant IQ gains for young autistic children who received intensive behavioural intervention. This study will make no difference to the mindsets of the anti-ABA crowd which is as vehement in their opposition to ABA as the mercury-vaccine causes autism crowd are in their opposition to “Big Pharma”. For parents of newly diagnosed autistic children though it will be important information for them to be aware of as they decide how to respond to their children’s autism.

Date: May 6, 2007

Science Daily — Intensive intervention given to toddlers with autism as young as three years old can significantly raise IQ levels, potentially allowing them to benefit from mainstream education, new research has revealed.

Researchers at the University of Southampton, led by Professor Bob Remington of the School of Psychology and Professor Richard Hastings (now at Bangor University), undertook a study into the impact of two years of Early Intensive Behavioural Intervention (EIBI).

The results of the Southampton Childhood Autism programme (SCAmP) show that a group of children who received two years of intensive tutoring – or early intervention – had higher IQs, more advanced language and better daily living skills than similar children receiving standard educational provision.

IQ increased for two thirds of the children receiving the early intervention and ‘very substantially’ for more than a quarter of them. For example one child moved from an IQ of 30 up to 70; another from an IQ of 72 to 115. Most of the population of the UK has an IQ of between 85 and 115.

In what was a ‘tough test’ into whether EIBI could prove beneficial, specially trained staff and parents taught children with autism a wide range of skills in their own homes for 25 hours a week. Teaching was individualised to take full advantage of each child’s abilities and focus on areas of need; each lesson was carefully broken down into easy steps and children received constant praise and other rewards for their successes.

‘This form of teaching can, in many cases, lead to major change and enhance the life chances of children with autism,’ said Professor Remington. ‘In practice, the positive changes we see in IQ, language and daily living skills can make a real difference to the future lives of children with autism.

‘But those embarking on EIBI should prepare for some hard work. Twenty five hours of home therapy a week is a big commitment for children and parents alike. Before the research began we wondered if such intensive work would increase the emotional and psychological demands of childrearing, as teaching basic skills needs a lot of dedication and patience and family organisation has to adapt to the ever-present home tutors.

‘In fact most parents took this in their stride. The reasons are clear. It’s harder to be helpless than it is to get involved in teaching, and in most cases our parents saw rapid improvements in their children’s skills and behaviour.’

An estimated 535,000 people in the UK are living with a condition on the autism spectrum.

The SCAmP team is embarking on a follow-up study with those children who took part in the research to establish how long-lasting the effects of the treatment are and how benefits can be extended.

Note: This story has been adapted from a news release issued by University Of Southampton.

http://www.sciencedaily.com/releases/2007/05/070506163608.htm

May 6, 2007 Posted by | aba, autism disorder, autism research, behavioural intervention, eibi, IQ | 4 Comments