Autism Reality

Bill C-304 to be debate in the House of Commons Wednesday

Charlottetown Liberal MP Shawn Murphy’s private member’s bill will be debated in the House of Commons tomorrow. The bill calls for development of a national autism strategy for autism treatment and amendment of the Canada Health Act to ensure autism treatment availability across Canada. This motion is different from the Scott-Stoffer motion as amended by the Conservative government in that it calls for amendment of the CHA which will almost assuredly doom it to defeat when it comes to a vote. The Bloc Quebecois members will vote against it unanimously because, in the “thinking” of the Bloquistes it is more important to argue about constitutional boundaries then take definitive steps to help children with a debilitating disorder like autism. Most Conservative members will vote the same way for similar reasons. Regardless of the outcome it will be interesting to listen to the debate.

The telecast is 5:30 EST and for those of us fortunate enough to live in the Atlantic time zone 6:30.

http://www.shawnmurphymp.ca/?page=medianews&action=showInfo&itemID=203

Bill C-304 to be debate in the House of Commons Wednesday

OTTAWA – MP Shawn Murphy’s Private Member’s 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, will be up for its last hour of debate at second reading in the House of Commons tomorrow at 5:30pm EST (6:30 Atlantic). The debate will be carried live by CPAC.

If passed, C-304 would require the Government to table a national strategy to streamline the availability of treatment for autism spectrum disorder across the country.

Mr. Murphy is available to speak to the Media about his Private Members Bill upon request. Following the debate, transcripts of his speech will also be available.

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February 13, 2007 Posted by | autism, Canada Health Act, national autism strategy, Shawn Murphy, treatment | Leave a comment

Aubrey’s Journey: Emerging from autism

If you do a google blog search on autism you will find many blog sites hosted by high functioning autistic persons who view autism in a positive light and characterize efforts by parents and advocates for autism cures and treatments as oppression, breaches of their human rights. There are other autistic persons, such as some who appeared before the Canadian Senate, who are supportive of efforts to assist autistic children and adults in overcoming some of the deficits associated with their autism. The Albany Democrat-Herald reports the story of Aubrey, a young lady with Aspergers’ Syndrome who benefited from early intervention and left many of her autism deficits behind. Aubrey’s mother, D.L. Clarke, has written a book about her daughter’s story and hosts a web site where parents and other interested persons can learn more:

http://www.aubreysjourney.com/


Emerging from autism

When Aubrey was born in 1992, she looked and acted like all other babies.

But as she grew older, she began walking on her tiptoes, she pitched tantrums and she screamed when her hands got dirty. She did not want to play with other children, and she was terrified of swings and teeter-totters.

Yet, Aubrey was intelligent and often appeared normal in unfamiliar situations.

Physicians assured Clarke that her daughter was normal. Clarke knew differently in her gut, but she did not want to accept the fact that her daughter might not be “perfect.”

In a book released Jan. 15 targeted to parents of children with behavior problems, Clarke discusses ways to seek a diagnosis for various disorders in children, and she explains how to keep hope alive and not to give up in dealing with situations no one seems to understand.

It was not until Aubrey was 3 years old that an early intervention team from the Linn-Benton-Lincoln ESD used the word autism to describe Aubrey’s behavior.

“That diagnosis opened a door of support that we didn’t have before,” Clarke said. “Gradually we found out she had Asperger’s Syndrome and not full-blown autism.”

Since then, through counseling, therapy and family encouragement, Aubrey has left many of her symptoms behind.

“She’s not cured, but she’s learned to cope and adapt,” she said. “Part of what helped is I encouraged her to get involved in activities. I treated her the same way as my other two children, and told her I expected her to learn and be independent.”

Aubrey is now 14 and a freshman in high school. She has entered talent shows, been part of a singing group and a dance team. She tutors elementary students at a Boys & Girls Club, and she wants to go to college and eventually have a family.

“I can’t imagine the consequences if I hadn’t kept on pushing,” Clarke said.

Signed copies can be ordered through her Web site: aubreysjourney.com.

http://www.dhonline.com/articles/2007/02/02/news/local/3loc08_autism.txt

February 3, 2007 Posted by | Aspergers' Syndrome, Aubrey's Journey, autism disorder, autism education, D. L. Clarke, early intervention, treatment | 1 Comment

Mayo Clinic – No Evidence to Support Chelation Autism Treatment – Can Be Dangerous

In this comment Dr. Hoecker of the Mayo Clinic states that there is no evidence to support Chelation as an autism treatment. Chelation can be dangerous – even deadly.

http://www.mayoclinic.com/health/autism-treatment/AN01488


There’s no scientific evidence that chelation therapy is an effective autism treatment.

In recent years, some doctors and parents have recommended chelation therapy as a potential treatment for autism. Proponents believe that autism is caused by mercury exposure, such as from childhood vaccines. Chelation therapy supposedly removes mercury from the body, which cures autism.

But extensive studies have revealed no evidence of a link between mercury exposure and autism. In addition, chelation therapy is not approved as an autism treatment and can be associated with serious side effects, including liver and kidney damage that can result in death.

There is no cure for autism. As a result, unproven alternative therapies are often suggested to parents who — frustrated by the lack of effective medical treatment for autism — are desperate to find something that will help their children. However, in clinical studies, these alternative therapies are usually found to be ineffective and sometimes harmful. Talk to your son’s doctor before starting any alternative autism treatment.

Although no cure for autism exists, early behavioral and educational interventions can help children with autism improve their communication and social skills.

January 27, 2007 Posted by | autism disorder, chelation, health, mercury, treatment, vaccines | Leave a comment

Progress and Challenges in the Behavioral Treatment of Autism

The Association for Behavior Analysis is sponsoring an Autism Conference in Boston next week with an excellent roster of speakers and topics on Behavioral Treatment in Autism. With so many myths and misconceptions about ABA and autism it looks like this conference could be very helpful for parents looking for professional guidance on how to improve conditions for their autistic children. The introduction for the conference program follows but the detailed list of speakers and topics can be found by accessing the ABA International web site at:

http://www.abainternational.org/autconf/downloads/Program_posters.pdf

Progress and Challenges in the Behavioral Treatment of Autism
Association for Behavior Analysis February 2 – 4, 2007 Boston Sheraton; Boston, MA

The diagnosis of Autism Spectrum Disorder in a child presents tremendous challenges for parents and educators. For several decades applied behavior analysis has provided the conceptual and empirical bases for designing and evaluating effective education and treatment programs for children with autism. It has been estimated that more than 550 articles have been published in the peer-reviewed literature reporting socially significant improvements in communication skills, social skills, academic skills, and adaptive functioning by children with autism as a result of behaviorally-based interventions. As the beneficial outcomes of behaviorally-based education and treatment have been reported by the media, the number of agencies and individuals offering “ABA services” for children with autism has grown exponentially. Inaccuracies and misconceptions in the popular media and in the professional literature about what applied behavior analysis is or is not and what it can or cannot achieve make it difficult for consumers and practitioners alike to separate fact from fiction.

In response to this situation, The Association for Behavior Analysis International is sponsoring the 2007 Autism Conference, Progress and Challenges in the Behavioral Treatment of Autism, to be held at the Sheraton Hotel in Boston on February 2-4, 2007. Planned with the support of ABA International’s Autism and Parent Professional Partnership Special Interest Groups, this conference will expose providers of home and school-based behavior analysis services, parents and family members, caregivers, researchers, teacher trainers, and students to the most current, scientifically validated information about behavior analysis in autism treatment.

The single-track conference will feature 14 invited presentations by prominent researchers and authorities on the treatment of autism and representatives from the May Institute and the New England Center for Children (past SABA Awardees for Enduring Programmatic Contributions to Behavior Analysis). The conference will also provide a forum for over 170 autism researchers to share their recent work in two poster sessions. The conference will close with a Round Table discussion by representatives of ABA International’s organizational members. The conference will provide many opportunities for personal exchange with researchers, presenters, and organizational members of ABA International.

January 26, 2007 Posted by | aba, autism, autism disorder, education, evidence based, scientific, treatment | Leave a comment

ABA4Autism or other Neuropsychological Disorders


ABA4Autism or other Neuropsychological Disorders

The scientific literature and my 35 years experience as a psychologist have convinced me that Applied Behavioral Analysis (ABA) is the most effective treatment for children with Autism or other Neuropsychological Disorders. My “Clinic Notes” will document current clinical and scientific developments

– Dr. Gary Brown, Psychologist/HSP Professor and Chair Department of Psychology University of Tennessee

http://aba4autism.blogspot.com/

Autism sites in the blogosphere often provide much heat and shed little light on how to help autistic persons, particularly severely autistic children. Important issues sometimes become bogged down in personality attacks and personal prejudices. As a parent and an advocate I am happy to have a blog site on which to express my views and relate my experiences. But the arguments over causes of autism and the politically correct way to describe persons with autism , even mention of our own childrens’ challenges, seems to ignite furious rhetoric and do little to add to our knowledge of how to deal with autism. The above site by Dr. Gary Brown looks like it could be a signicant and positive addition to the blogosphere. Dr. Brown also has a web site with information and links to resources for parents and other persons focussed on improving the lives of autistic children – ABA4Autism.com. Check out Dr. Brown’s blog and web sites.

http://aba4autism.com/

January 26, 2007 Posted by | aba, autism disorder, blogs, interventions, psychology, treatment | Leave a comment

Jason Oldford Testifies Before the Canadian Senate Committee Studying Autism Funding In Canada

Jason Oldford is a person with autism who served on the Board of Directors of the Autism Society of New Brunswick for several years where he played a key role. On December 6, 2006 Jason Oldford testified before the Standing Senate Committee on Social Affairs, Science and Technology which was meeting to consider the inquiry on the issue of funding for the treatment of autism in Canada. Jason’s testimony was recorded in Hansard:

Jason Oldford, as an individual: I am honoured to address this committee. I was diagnosed with autism in 1974 when not much was known about it. I will tell you a bit about myself. I will not take long. I have quite a few things to say about funding for treatment.

I still have a few weaknesses with my autism. Eye contact is one of them. My social skills are not perfect. They are not up there with a typical person either.

On the plus side, my language developed normally. I was able to read by the age of three. I know trivial matters that other people would not dream of knowing. I tend to interpret things literally sometimes.

I have two university degrees and I attended public school with all the other children. I was not put in a special education class.

The reason I accepted the invitation to appear before this committee was to tell you what I would like to see. I would like to see severely autistic people become more like me, or more like others like me, to become more high-functioning. It can happen. I believe it.

There are about 100,000 people affected by some form of autism across Canada. When their parents received the diagnosis, immediately the research started looking for a treatment. They came across this ABA, applied behavioural analysis. It is the only evidence-based treatment that is available. The only drawback is that it is expensive. They cannot afford it. For that reason, they go to the respective provincial governments and try to get them to do it. It has not worked out the way they planned.

Autism is a life-long disorder. There is no cure. There are several treatments. Only one is evidence-based. There is no cure.

The key is early intervention, early diagnosis, and early detection. If treatment is started immediately upon diagnosis, or soon thereafter, within three or four years a child could enter school and perhaps not need ABA. He could go on, get a high school diploma, get university degrees, and be able to contribute to society.

I was pleased yesterday when I heard that the House of Commons had passed motion M-172, for a national autism strategy. I turned 36 yesterday. That news would rank up there with one of the best birthday presents I could receive.

The provinces worry about resources and having to live within their means. I understand the provinces have to live within their means. That is where the federal government comes in and helps out. If the federal and provincial governments put their heads together and work this thing out, a solution can be reached in the autism treatment situation we have in this country, in every province and territory.

There is a concern about having autism treatment funded under medicare. I am in favour of that. Ultimately, it is up to the provinces and territories. Each one has its respective medicare plan. Should any provinces decide not to fund this treatment under medicare, not only do I think they are making a mistake, I think they should find some place in their respective budgets to fund that treatment.

You also come to the issue of education. We need therapists certified in ABA. We need people in our schools trained to deliver ABA to autistic students. We need enough so that there are no waiting lists.

I have heard stories about people who have tried to get into speech and occupational therapy; some have told me were on a waiting list for months or years. Others are still on waiting lists. That is a problem that needs to be addressed and solved.

ABA is an expensive treatment. You have probably heard the figure $60,000 per year per child. It is derived from 52 weeks a year at 40 hours a week at $30 an hour.

Parents put themselves on the verge of bankruptcy when they have to pay for that treatment out of pocket. I certainly understand the situation they are in. I am amazed they can cover the treatment they need for their child and still pay the bills. How they do it, I do not know. Somehow, they get it done.

Early intervention, detection and diagnosis, can lead the way to a child’s achieving his or her full potential, to become productive in society. If Ottawa and the provinces work together, we could have a solution.

As was mentioned, ABA is not perfect. According to studies, only 47 per cent of those tested were indistinguishable, but 47 per cent is a lot better than zero.

If provinces and the territories and the federal government all work together on this, it will lead to solutions. None of the world’s problems was ever solved by arguing; none of the world’s problems was ever solved by doing nothing; none of the world’s problems was ever solved by worrying.

If Ottawa can get together with the provinces and territories and come away with a solution — and I am confident that they can; I am confident that they can accomplish this — just think of how many children will not be in group homes or institutions. Think of how many children will be able to contribute to society if they get this treatment. With the provinces and Ottawa working together, I know that can happen.

..

Mr. Oldford: Yes, I was recommending federal leadership with the federal government and the provinces agreeing on something to fund evidence-based treatments. The bill that was passed yesterday talked about evidence-based standards. That is good. It talks about developing innovative funding methods, and that is good too. I read an explanation that said that that means that the provinces, territories and federal government discuss how to fund evidence-based treatment.

The only evidence-based treatment that currently exists is ABA, but there may be more to come. Judging by what I have read, I think that sooner rather than later ABA will have company in the evidence-based treatments category. If any other evidence-based treatments were to come up I would support those, too, especially if they cost less than ABA does.

The governments must agree on how to fund a treatment that is proven to be scientifically validated and evidence-based.

Mr. Oldford: I agree with every word that Ms. Harrisson. I do not have any statistics on the number of adults that are autistic, that are in group homes or that are in institutions. I would say that a small number of autistic adults are in group homes or in institutions. I could be wrong, but I do not think there are that many.

When you read about autism, you read about autistic children. Autism is diagnosed during childhood. Some of the higher functioning types of autism can be diagnosed in adolescence or even adulthood.

Adults still need treatment. In the last session one of the things they discussed was age restrictions. I do not think there is any need to have them; they are discriminatory. Once a child turns five or six years old and still needs treatment, they should not be cut off. They should still get the treatment. If someone is diagnosed as an adult and needs treatment, they should get the treatment.

Getting back to housing, as I mentioned earlier, whoever works with autistic people in group homes and institutions has to have the proper training and has to know how to deal with autism. If they do not, it is not a good situation. There is also a need for proper housing for people with autism, not just in my home province of New Brunswick, but in every province across Canada.

The Chairman: Do most people with ASD live at home with parents or do many live on their own?

Mr. Oldford: I would say a good number of them live with their parents. I lived with my parents until this past July when my brother and I bought a house. I would think that most autistic people do live at home.

That brings us to another issue: employment. When they become adults, most people with autism are either unemployed or underemployed, which is the reason they live with their parents or in group homes. They do not make enough money to be self-sufficient. It is a bad situation. That should be discussed, too, when they discuss the treatment issue.

..

Senator Munson: There seem to be more and more diagnoses of autism; one in 166 is the new figure. With these diagnoses, we either pay now or later, and pay big later. We will have the statistics on homes like this if this keeps up this way. Do you agree?

Mr. Oldford: I would have to agree with that. I have heard people fighting for treatment telling the governments that, as you said, Senator Munson, the governments can pay now or pay later. We understand this treatment is expensive, but if you pay for it now, look at the return you will get on your investment. The people with autism will get out in the real world and get jobs, and that will stimulate the economy. Or you can pay later, which means they will go into group homes and it will cost the taxpayers a lot of money in the long run to keep them there.

..

Mr. Oldford: We do need more autism awareness. As Mr. Hooker has mentioned, many people look at us as low-functioning people because they view autism that way. They see it on television and read about it in the papers. They think, “Boy, I am glad I do not have a child like that.” Even in the most severe cases, autism is not the end of the world.

One way to promote awareness is through columns in newspapers and television appearances, as Mr. Hooker said. I would add that perhaps more people with autism spectrum disorder could be invited to speak at conferences. One of the measures that the government announced last week in its autism strategy was that there would be a national autism symposium next year. At that national symposium I would like nothing better than to see people with autism being invited to speak.

Mr. Oldford: Education is required for teachers and employers. However, as for team work, people with autism prefer to work alone. Sometimes when you put people with autism into a team setting they can become a bit temperamental and a bit hot under the collar. It could be because the other team members do not agree with the suggestions, or for other reasons. On the school front, there have been stories about even the most high-functioning students becoming aggressive. It is not their nature but it happens when they are frustrated at not being able to communicate their feelings appropriately. In many cases, teachers will send those students to the principal’s office, put them on detention, suspend them from school or send them home for the day, which is an inconvenience these days for parents because in most families, both parents work outside the home.

Employer and teacher education is needed when it comes to autism and how to deal with it. They need to know how to deal with situations that arise that could be caused by the autism.

Mr. Oldford: Sometimes I do find myself in a situation of the type you mentioned. More often than not, it is advising parents of autistic children. Basically, all I give them is words of encouragement. I am in no position to tell them how to raise their children.

There is quite a large autistic population, even in a small province like New Brunswick. The only advice I give them is just do not give up the fight.

January 23, 2007 Posted by | aba, ASNB, autism, autism disorder, autism education, employment, evidence based, health care, New Brunswick, residential care, treatment | Leave a comment

Breaking the Autism Taboo (2) – The Harris Family of North Texas

In a recent post I commented on the fact that those speaking truths about the difficulties faced by many autistic persons and the families and other caregivers who love and care for them are often set upon by internet posters who criticize, mock and ridicule them. But such pressure is not forcing parents of severely autistic children into silence. The Harris’s of North Texas have told their story and that of their 16 year old son Colton. It is a haunting tale but one which many parents of severely autistic children are familiar with. Parents of children like Colton Harris do not give up on their children. They continue to love and care for them at great expense to their own health, finances and emotional well being.

I applaud the Harris’s for speaking out and telling their story.

http://www.sanluisobispo.com/mld/sanluisobispo/news/nation/16479635.htm

FORT WORTH, Texas – As a little boy, Colton Harris punched his fist through living room walls and bedroom windows.

Sometimes he would twist his pale thin legs like a contortionist. Twice he bent his ankle until it broke.

Now 16, Colton is the size of a man, but with three times the testosterone. Instead of shoving his fist through a wall, he slams his body into it. Just after Thanksgiving, he knocked out the only windowpane in the family’s north Fort Worth home that had not been replaced with Plexiglas.

Colton’s parents worry as their autistic son grows older, stronger and more aggressive. In five years, Colton will no longer be eligible for special-education services.

The Combating Autism Act signed by President Bush last month authorized $920 million in federal funds over five years to pay for research, education, screening and intervention. Advocates praised leaders for acknowledging autism as a healthcare crisis. Others say there’s too much focus on research when services require more immediate attention.

“We also have got to do something for the here and now,” said Anna Hundley, executive director of the Autism Treatment Centers, which have offices in Dallas and San Antonio. “It’s like cancer; you have to find out the cause, but you have to treat the disease, too.”

“Most people’s idea of autism comes from the movie `Rain Man,'” said Anne Dachel, a member of the National Autism Association.

But the disorder affects children in different ways. Some can grow up to be fully functioning adults. For example, some children with Asperger syndrome, sometimes dubbed “autism light,” can graduate from college, hold jobs and live independently. Others will always be dependant on caregivers.

Nearly bankrupted by the cost of caring for their son, Colton’s parents aren’t sure what kind of future he faces.

“My greatest fear is that one day we’re not going to be here for him,” Harris said. “It haunts me day and night.” Raising Colton has meant no family vacations, dinners out or even a moment of relaxation.

He is among the 40 percent of autistic children who are nonverbal. He cannot use the toilet by himself.

As a child, Colton typically became aggressive when he was in pain caused by a gastrointestinal disorder common among autistic children. The outbursts became more frequent and aggressive with adolescence.

“It would get so bad that he would dig his teeth into anything or just bang them into stuff,” Harris said. “You’re thinking, please, God, don’t let him break his teeth.”

Aggression, aimed at themselves and others, is not uncommon among people with autism, Karni said. But it’s often because they become extremely anxious. As they age and get bigger, it becomes more of any issue, she said.

Colton was 14 before doctors diagnosed him with autism.

The family tries to keep the furniture clean and the floors swept, but Colton is tearing apart the house a piece at a time. His parents have learned to set their routines around Colton and to ignore the incoherent sounds coming from his bedroom.

“You try to do your best, but what can you do with a child that is just not there?” Harris said. “This is a 24-hour-a-day, in-your-face-with-no-breaks life.”

Yet they refuse to give up.

“He’s still your kid, and you love him,” said Harris, who will not consider institutionalizing Colton. “My fear is that since he can’t speak people will take advantage of him.

January 17, 2007 Posted by | autism, family, treatment | 1 Comment

Early treatment of autism hinges on genetic discoveries

Much attention has been paid to purported environmental causes of autism. Controversy has raged over both the MMR vaccine itself and the use of thimerosal, a mercury based preservative used in vaccines as a potential cause of autism.

As prominent a figue as Robert Kennedy Jr has pushed the thimerosal theory before the US Congress and the world. There is however precious little scientific support to date for the vaccine/thimerosal theories. Recent environmental theories include Lyme Disease and television as possible causes of autism.

Notwithstanding the focus on potential environmental causes of autism it is heartening to read that research continues on genetic factors. Genetic research is an important element to the early identification and treatment of autism including development of specific treatments for individual autistic persons as discussed in a very readable article by Dr. John Bernard, president of the Children’s Research Institute, published in the Columbus Dispatch:

Identical twins have identical genes, while fraternal twins are genetically similar, but not identical. When identical twins have autism, both are affected about 60 percent of the time, whereas fraternal twins are both affected only about 5 percent of the time.

These findings strongly suggest a genetic basis for many cases of autism.

But current thinking is that autism spectrum disorders do not result from genetic factors alone. It is likely that unknown environmental factors also are involved, perhaps as a result of genetic susceptibility.

It is probable that each of the autism spectrum disorders is associated with a specific genetic abnormality. However, scientists involved in the search for specific genetic abnormalities in autism are challenged by the complex variability of individual cases.

Unless individual children can be accurately and specifically classified within the autism spectrum, the search for underlying genes is clouded. Fortunately, specific genetic abnormalities are now being discovered for some of the rare and distinctive types of autism spectrum disorders.

Discovering specific genetic abnormalities associated with autism spectrum disorders might help detect them earlier in life than currently is possible.

Children then could receive customized treatment programs at the earliest possible age, when the prospect for success is best. It is also possible that drug treatments can be designed by researchers to specifically modify the genetic abnormality involved.

http://www.dispatch.com/science/science.php?story=dispatch/2007/01/16/20070116-D5-04.html

January 17, 2007 Posted by | autism, Bernard, causes, environment, genetics, health, Kennedy, Lyme Disease, research, thimerosal, treatment, vaccines | Leave a comment