Sunday, January 28, 2007

The Joy of Conor

Because finding joy in Conor does not require struggle; Because the point is he is Conor, he is not his Autism; Because he does not comprehend what Autism is and can not offer his opinion about autism; Because Conor is a joy but his Autism is not; Because he rises in the morning and greets his family with a smile; Because he waits, faced pressed against the window, for his Dad every day and lifts his Dad's spirits every day; Because despite his intellectual, communication and behavior problems he is worth it; Because, like any other child, he deserves to be educated to the fullest extent possible and to learn in the way that he learns best; Because it takes hard work and sacrifice, not accepting or singing the praises of Autism, a serious and debilitating disorder, to ensure Conor learns and develops to the best of his ability; Because the tremendous joy that he brings me every single day does not arise from his autism it arises from who he is and his Autism, a serious developmental disorder, will not be given credit for that great joy he shares with us every day.

Saturday, January 27, 2007

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.

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.

Mayo Clinic - No Evidence to Support Gluten Casein Free Autism Diet

An unidentified poster asked an expert from the Mayo Clinic whether there special diets, specifically Gluten Casein free diets can help children with autism. The Mayo Clinic per pediatrician Jay Hoecker, M.D., state clearly that there is NO EVIDENCE to support the effeciveness of gluten casein free diets. This one was popular when my son was diagnosed 9 years ago and we tried it for awhile and saw no benefit. Dr. Hoecker also emphasizes the potential harm from nutritional deficiencies that might arise from such a diet.

There's no evidence that special diets, such as restricting certain foods, are an effective treatment for autism.

Autism is a complex brain disorder that has no known cure. For this reason, many frustrated parents turn to unproven alternative treatments in an attempt to help their children. The most popular of these alternative treatments are diets that eliminate gluten or casein, or both.

Proponents of restrictive diets believe that casein, a protein found in dairy products, and gluten, a protein found in many grains, affect brain development and behavior, causing autism in some children. However, there's no scientific evidence that this is true or that restricting these foods improves autism. Furthermore, restrictive diets can result in nutritional deficiencies in growing children.

Parents should talk to their child'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.

Friday, January 26, 2007

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:

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.

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

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 - Check out Dr. Brown's blog and web sites.

Thursday, January 25, 2007

Autism Interventions Over the Internet

The Canadian Senate committee examining autism funding heard testimony from an autism expert, Dr. Jeannette Holden, in which Dr. Holden advocated the use of computer technology to alleviate the problem of providing autism intervention services to families of children with autism. Dr. Holden referred specifically to Virtual Experts Clinic a company which produces an online program called Autism Pro. Dr. Holden stated that Autism Pro "is not meant to replace therapists, but gives parents on waiting lists a chance to start doing something with their children."

The waiting list problem for autism interventions is a serious problem in most areas of Canada and if a child is not actually involved with a therapist then in one sense it could not be said that parents would be replacing therapists by relying on an internet program to provide their own intervention for their children while they wait for the assistance of actual therapists. In a different sense, however, parents providing interventions are in fact performing the functions of, and thereby replacing, therapists. The parents who provide such interventions may or may not have any training or supervision while they are doing so. As a parent I understand fully that a parent will probably not want to sit back and wait for a therapist to become available to work with their child. Non-professional intervention though raises the question of potential harm from improperly provided interventions.

Virtual Experts Clinic originated in New Brunswick. As an active member of the autism advocacy community in New Brunswick I have met its creator, Ms. Cynthia Howroyd and had the opportunity to review Ms. Howroyd's proposal in 2003 when it was in a more conceptual stage. The concept was presented to an autism steering committee established at the University of New Brunswick of which I am, and was at the time, a member. I had several concerns about the concept which I still hold.

1) Environment - as a parent of a profoundly autistic 11 year old boy I know that his environment is a critical factor in understanding his behavior and potential negative influences on his behavior. It is difficult to assess and analyze problem behavior from a distance without actually viewing, hearing, touching or smelling the environmental factors that might bother my son at a given point. Even being present in that environment it is not easy since he is much more sensitive to environmental stimuli than I am. The program of course relies upon the input of the parent or professional who is using the program and presumably has taken the environmental factors into account in analyzing the behavior. But with the transfer of that input to a program written by experts on a generic basis the possibility for an improper analysis and recommendation would seem to me to be greater.

2. Accountability - if interventions are not done properly at any stage will Virtual Experts or the experts who provide the input for the program be held accountable at least to their professional bodies and if so in what jurisdiction? It is not clear that users will have any real recourse for problems that might arise from use of the program - other than a return of funds which may be small consolation if a child has regressed as a result of improper intervention. While Autism Pro adverises a no-risk trial that no-risk claim clearly refers to fees paid not to risk of harm or delay in a child that might result from use of Autism Pro:

No Risk TrialVirtual Expert Clinics Inc. will refund the full value paid for AutismPro if you are not satisfied with the program within 30 days of receipt. If you wish to cancel your subscription after 30 days, a refund payment will be prorated at the monthly price paid in advance, based on the number of months remaining on your subscription. We do not require a reason for cancellation or any advance notice.

3. Non-evidence Based Interventions

In the Autism Pro press releases Ms. Howroyd states that Autism Pro uses evidence based interventions. "Because AutismPro is online intelligent software and because it integrates the full range of evidence based interventions in autism it is also a powerful tool for researchers to collect data on intervention choices and related outcomes for different children."

The problem I have with that statement is that, to my knowledge, only one intervention, Applied Behavior Analysis, is considered to have met the standard of evidence based intervention for autism. See for example the MADSEC Autism Task Force Report and the Association for Science in Autism Treatment. Most of the experts and expertise associated with Autism Pro are not ABA oriented.

4. Potentially Ineffective Use of Scarce Resources

I became aware of the conceptual precursor to Autism Pro shortly after the New Brunswick Provincial government announced on April 1, 2003, that it would provide funding for some autism services. Ms. Howroyd sought out various autism organizations in New Brunswick shortly thereafter to present her idea for an internet based answer to the demand for autism intervention assistance. More recently, a motion has been passed in the House of Commons calling for a National Autism Strategy and Virtual Experts has lost no time in positioning itself as a potential recipient of funding resources in connection with the motion as one of their press releases shows:

"A private members motion put forth by New Brunswick Liberal MP Andy Scott calling for the federal government to develop a national autism strategy was passed on December 5. On December 7, the United States senate unanimously passed a bill authorizes nearly a billion dollars in spending for autism research and programs."

I think it is unfortunate that Dr. Holden has chosen to publicly endorse and enthusiastically support Autism Pro in such a high profile environment as the Canadian Senate Committee studying autism funding given that she is still conducting a research study using Autism Pro.

"Dr Holden is currently undertaking a research trial consisting of 46 families across Ontario, including 63 adult care providers and 52 children aged 2 to 9, using AutismPro. The study is being done in partnership with Autism Ontario and Autism Spectrum Disorder - Canadian American Research Consortium (ASD - CARC) out of Queen's University. Participants have been provided with a one year subscription to the program."

It is difficult to see how Dr. Holden, despite her expertise, will be able to remain detached and objective in her conduct of the study given that she has already publicly endorsed the program which she is using in the study. Technology is glamorous and we live in an era when information technology increasingly dominates our lives and decision making. This blog site itself would have been unimaginable a few short years ago. Maybe Autism Pro will provide real solutions to autistic children. I am sure that there will be tremendous pressure exerted on government to provide more funding to Autism Pro than it has already received from organizations such as the New Brunswick Innovation Foundation. Since resources are not unlimited choices will be made about which options receive funding, to what extent, and which do not. Hopefully the decisions will be made carefully and not on the basis of trendiness, glamour or high pressured PR campaign. Autism Pro press realeases constantly tout parental support for the program. As a parent my experience makes me much more cautious. My experience tells me that autism intervention is a very personal face to face matter.

For now, anyway, this parent is not convinced - I am still not Pro Autism Pro.

Wednesday, January 24, 2007

New Brunswick School District 17 Autism Update - Much More Must Be Done

New Brunswick School District 17 has received an update on its existing program for teaching children with Autism Spectrum Disorders. The items focused on in the press release are certainly positive developments but they have been in place for some time now and are really only a small first step. The teachers aides who actually deliver the programs and work directly with autistic students require training at the UNB-CEL, and the Resource Teachers who supervise and assist with plan development on a regular basis also require training. That was the idea behind the commitment from Liberal leader Shawn Graham, now Premier Graham, during the recent election campaign to train 100 TA's and Resource Teachers per year in New Brunswick for the next four years. District 17 should be applauded for following up on its existing program but much work remains to be done and Premier Graham's training commitment must be followed through if this generation of New Brunswick autisic students are to receive a real education.

School autism plan enhanced


Published Wednesday January 24th, 2007
Appeared on page A2

District 17 Education Council says it's pleased with the progress of its new programs and teaching methods for children with autism spectrum disorders.

The council received a update on its service-delivery model at a DEC meeting Tuesday.

"Before this year, we had resource teachers who worked with a huge variety of children, and they were stretched very thin," said Supt. Marilyn Ball.

"The Department of Education partnered with UNB to develop a training program for staff members and from that it became clear we needed to put a program in place specifically for autistic children."

The district has since added three resource teachers for autism who are trained solely to work with autistic children. They travel between all the school in the district, working with teacher assistants and resource teachers to ensure all autistic children are getting the best education possible.

Their goal is to develop programming specific to each individual child since the symptoms and difficulties of autism can have a wide range.

Sandra Bulmer was one of the first to receive the training that is offered by the University of New Brunswick and paid for by the department.

She now works as one of the psychologists for the district.

She said they've surveyed schools and written files on each child that has been diagnosed as autistic.

From that, the resource teachers have identified the specific needs of each of the 48 children.

Tuesday, January 23, 2007

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.

Monday, January 22, 2007

For Severely Autistic Children - "Nothing is going to change if people don’t know what’s going on"

“Nothing is going to change if people don’t know what’s going on,”

- Michele Iallonardi of Hauppauge, a mother of three boys with autism

The above quote from the New York Times review of the Autism Speaks film "Autism Every Day" which will be featured, starting today, at the Sundance Film Festival, explains exactly why it was necessary for the parents of severely autistic children who appear in the film to describe some of the unpleasant realities of their childrens' severe autism and life for family members who care and love those children. As a father of a severely autistic 11 year old boy who, like his non-autistic brother, brings me joy and lifts my spirits every day for the past decade and more, I applaud their efforts. And will do so again.

As expected the film has drawn criticism from those who wish to pretend that autism, even for those with severe cases of autism, is beautiful. There are those who want everyone to think that autism is NOT a disability or a disorder, that it is just another variation in the human condition with no negative aspects to it. The more extreme amongst the Autism is Beautiful crowd have attacked anyone who advocates for health and educational interventions to improve the lives of their own children. To the extremists attempts to cure or educate autistic children, to give them the skills to function alongside other members of society is akin to a form of abuse; an attempt to steal from autistic children their true nature.

"For Sundance, the piece was expanded to 44 minutes, still focusing on more impaired children. They are the ones, as Ms. Singer characterizes them, “who don’t make enough progress to be mainstreamed, who continue to struggle, who still have such challenging behaviors.” “That’s why we made this film, to tell their stories,” she said.

It is a story that must be told and retold. There are indeed Autistic persons of high intelligence, some of whom write fine essays of their appearances before courts and parliamentary tribunals. But they have little in common with severely autistic children. It is the parents of such children who must tell THEIR stories openly and honestly so that people will know. It is the parents of severely autistic children who love and care for them, 24 hours a day, seven days a week, and know the true stories of their childrens lives who must speak up. We must tell their stories. Otherwise, as Ms. Iallonardi has said "nothing is going to change".

Saturday, January 20, 2007

Conor's Snow Fun

The day after the big storm and Conor gets out to enjoy the snow - and gets Dad out there too!

Autism Every Day - The Realities of Raising Severely Autistic Children

The film Autism Every Day will soon show - January 22 and 27 - at the Sundance Film Festival. Like many efforts to treat or educate autistic children or to speak about the realities of some autistic persons this film has generated criticism amongst some autistic persons, caregivers and professionals who do not believe that Autism is a disorder. From that perspective autism is simply a variation of human existence neither inherently better or worse than any other variation.

Personally, as the parent of a severely autistic 11 year old boy who I love with all my being, I appreciate the courage of the parents in the film who have told the stories of their children, and their families, for the world to hear. The world should understand that, while there are many very intelligent, articulate and talented persons with autism, there are also many autistic persons with severe intellectual, communication, sensory and behavioral challenges. These challenges pose serious risks to the health, safety and lives of the autistic children themselves and to family members. The reality is raisng and genuinely caring for severely autistic children takes an enormous toll on families, even with the great joy which the same children can bring to our lives.

I have not seen the entire 44 minute version of Autism Every Day. I have viewed the shorter version, which is on line at the Autism Speaks web site, and can be found at this link:

I thank the makers of Autism Every Day the parents who appear in the film, their autistic children and other family members for describing their realities, their challenges.

Thursday, January 18, 2007

Goody Bledsoe Signing By Heather Doherty

Conor's mom, Heather Doherty, signing and reading from Goody Bledsoe at Westminster Books in Fredericton January 18 2007.

Wednesday, January 17, 2007

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.

"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.

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.

Tuesday, January 16, 2007

School Inclusion Can Be Abuse

School inclusion 'can be abuse'. That is the title of a BBC on line story which includes a report on a recent study of the British inclusive education system prepared for that country's National Union of Teachers "The Costs of Inclusion" by John MacBeath, Maurice Galton, Susan Steward, Andrea MacBeath and Charlotte Page, published by University of Cambridge Faculty of Education. Professor John MacBeath of Cambridge was interviewed and stated that placing some students in a mainstream classroom could be seen as a form of abuse:

"Physically sitting in a classroom is not inclusion. Children can be excluded by sitting in a classroom that's not meeting their needs." The typical secondary school timetable - rushing from physics, to history then French, say - was for some children as bewildering as being "on another planet". "You might call it a form of abuse, in a sense, that those children are in a situation that's totally inappropriate for them." Professor MacBeath also indicated that the report is not "anti-inclusion" , just that mainstream classroom inclusion is not appropriate for all students, particularly those with complex needs."

The BBC story and the "Costs of Inclusion" report can be found at:

I have personally argued against placement of all autistic children in mainstream classrooms as has the Autism Society New Brunswick which asks that the school system look at what works for each individual child. If a child does not learn in, and is overwhelmed by, a mainstream classroom then he or she should not be placed in that environment. A quieter environment is necessary for some autistic children who also require more individualized instruction. Flexibility in choice of learning environment is needed. Some autistic children are capable of learning in a mainstream classroom. Some are not. It is critically necessary to examine the evidence and see what works for the individual child. Failure to place an autistic child in the right learning environment because of a rigid adherence to the philosophy of mainstream classroom inclusion for all may constitute abuse.

Sunday, January 14, 2007

Please Honor Premier Graham's Autism Training Commitment

January 14 2007

Hon. Victor Boudreau
Minister of Finance

Dear Hon. Minister Boudreau:

I am writing to ask that you honor the commitment made by now Premier Shawn Graham during the recent election campaign during which time he promised to provide training for 100 Teachers’ Aides and Resource Teachers per year for the next four years at the UNB-CEL Autism Intervention Training program. The fulfillment of this promise is of vital importance to the education of autistic children. These children are not receiving the “cadillac treatment” in New Brunswick schools right now. Far from it.

For many autistic students fulfillment of Premier Graham’s promise will mean the difference between staying in school and not being sent home because teachers, aides, and other professionals did not understand their behavior and the conditions in the schools which can seriously disrupt environmentally sensitive and communication challenged children. For a great many others it will mean the difference between receiving a real education and simply being babysat as a false testament to New Brunswick’s inclusive education system. Teachers can not commit the time and attention needed to educate autistic children properly and instruct the rest of the class. Most autistic students need TA’s for safety reasons. It makes no sense whatsoever not to provide autism trained TA’s to assist them in learning. The UNB-CEL program is top notch and offers training in autism and the methods that work in educating autistic children.

My profoundly autistic son is almost eleven years of age. The previous government dragged out the Interdepartmental Committee Report on autism services for two years before issuing a report in 2001. The report went unread for another year by the lead minister charged with the autism portfolio. Most of its recommendations remain unfulfilled. My son is growing older. He has had properly trained TA’s for two of his six school years but even now with an excellent well trained TA she is not permitted to spend the full day with him and there is no one to replace her when she is absent for personal reasons. Many autistic students have TA’s with no autism specific training or no TA at all.

Do not underestimate the importance of the Premier’s commitment to train TA’s and Resource teachers to work with our autistic children Mr. Boudreau. They have lost out too long. They need autism trained personnel to help them learn and they need them now. Delay is not an option. Understand their needs, respect the Premier’s commitment and authorize the necessary funding.


Harold L. Doherty
Fredericton NB

cc. Education Minister Lamrock
Justice Minister & Fredericton-Nashwaaksis MLA Burke
Autism Society New Brunswick

Saturday, January 13, 2007

David Celiberti Workshops at UNB Wu Centre Jan 25-26 and Feb 22-24 2007

The UNB-CEL Autism Intervention Training Program is sponsoring two excellent workshops by Dr. David Celiberti, President of the Association for Science in Autism Treatment, (ASAT), and ABA Parent Professional Partnership SIG.

Core Workshop: Behaviour Management
January 25-26, 2007

This 2-day core workshop will examine how behaviour analysis is a humane but also a practical and effective way to eliminate challenging behaviours. It will examine the functions motivating challenging behaviour, the phases involved in setting up effective interventions through to the development of a written plan. It will also take the participant through specific intervention techniques such as DRO, shaping, escape extinction, response cost, etc.

Instructor: Dr. David Celiberti, BCBA

In 1993 David completed his Ph.D. in Clinical Psychology from Rutgers University. David is the Past President of the Autism Special Interest Group (SIG) ABA and now is the President of the ABA Parent Professional Partnership SIG. He is also the President of the Association for Science and Autism Treatment (ASAT). David has authored research articles and consults to programs.

Cost: $347.50 (plus HST) AITP past graduates (open to CS and ASW)
$695 (plus HST) Professionals in the field of Autism

Location: Wu Conference Centre, UNB's College of Extended Learning

Registration Deadline: January 11, 2007

Behaviour Management Registration Form
The registration form is in .pdf format.

For More Information
Kelly Pickard 506 447-3469 or

Advanced Workshop: Generalization and Program Writing
February 22-24, 2007

This 3-day advanced workshop will look at the various forms of generalization (stimulus, response, and temporal) along with specific methods that will increase the success at generalization (such as individualized programs tailored to the target behaviour). The two days on program writing will look at what makes a good program, what an overall program might look like, and will look at specific examples of programs identifying gaps that need to be filled. These sessions will be interactive.

Instructor: Dr. David Celiberti, BCBA

Wednesday, January 10, 2007

Autism DNA Databank

The creation of a DNA databank by researchers from 11 universities should spur the growth of knowledge about the genetic basis of autism. Hopefully the 3 year project will shed much needed light on a subject often characterized by heated emotion and entrenched positions.

11 research universities creating DNA databank for autism research with $10 million grant

The Associated Press
Published: January 10, 2007

ANN ARBOR, Michigan: Researchers at 11 universities will create a databank of DNA samples from 3,000 autism patients in an effort to identify different kinds of autism and develop treatments.

The University of Michigan will lead the three-year, $10 million (€7.7 million) effort funded by the Simons Foundation, the school announced this week.

The New York-based philanthropic group aims to spend $100 million (€77 million) long-term to find a cure for the developmental disorder that affects one in 200 children.

Adults and children with autism lack normal brain development in areas linked to social interaction and communication, but scientists do not know how many subtypes may exist. The gene data could help identify those types and treat newborns, said Catherine Lord, director of the Ann Arbor university's Autism and Communication Disorders Center.

Lyme Disease Induced Autism????

Lyme Disease Induced Autism??? Good grief Charlie Brown, what next? Turn the page on the calendar and it seems that a new cause has been found to explain what causes autism. MMR vaccines, thimerosal, Television, older dads (that one struck a chord with me as an older dad) now Lyme Disease is being touted as a primary cause of autism (purportedly 90% of children with autism are infected with Lyme Disease). I am amazed by this one because I did not know that Lyme Disease was that widespread and did not know that data had been kept correlating LD in some way with Autism. Meanhwile there is actually a Lyme Induced Autism Foundation which has been formed by parents and they are hosting a physician's think tank session January 26-28 in San Diego. Lyme Induced Autism? I will try to keep an open mind as the research continues but after all the thimerosal controversy I say show me the proof.

"Why are doctors saying that up to 90% of children with autism are infected with Lyme disease? The Lyme Induced Autism Foundation is holding a physicians' Think Tank on January 26-28th in San Diego, CA to discuss this recent finding.

Corona, CA (PRWEB) January 9, 2007 -- New reports indicate up to 90% of children with autism are infected with Lyme disease. With autism at a staggering 1 out of 166 children, parents are questioning this new finding.

Doctors and parents alike have been examining the potential causes of autism for years, some of which include thimerosol filled injections, environmental factors and most recently Lyme disease. With more doctors supporting the link between Lyme disease and autism, parents have joined forces to create the Lyme Induced Autism Foundation.

The foundation is holding a physicians' Think Tank on January 26-28th in San Diego, CA to discuss this recent finding. Co-founder Tami Duncan states, "The Think Tank is an opportunity to bring the Lyme disease specialists and the autism specialists together to create testing and treatment options for our kids." This is a groundbreaking effort which hopefully will analyze this even further to provide some answers to families.

Duncan says, "We are not saying that Lyme disease is the exact cause of autism for every single child. Let me clarify; what we are saying is that Lyme Disease could be an inciting factor that is suppressing the child’s immune system, which would make them more susceptible to heavy metal toxicity, environmental factors, etc. There are a large subset of autistic children in which this is happening. However, most children with Lyme Induced Autism cannot begin to heal until this infection is under control. Parents want their children healed of autism."

Where is the proof that Lyme disease is a factor in autism? Currently, several doctors have stepped forward talking about this. Dr. Warren Levin of Vienna, VA recently appeared on the online radio show on hosted by Duncan called "The Lyme-Autism Connection". He stated that of the 10 children with autism he tested for Lyme disease, 100% of them also came back positive for Lyme disease.

But more proof is needed to convince parents and the medical community to take action. The Lyme Induced Autism Foundation has announced its first fundraiser called "Laughter for Healing" at the Improv comedy club in Irvine, CA on February 24th, 2007.

The Lyme Induced Autism Foundation site can be found at:

Monday, January 08, 2007

Goody Bledsoe by Heather Doherty

I am breaking with the autism theme of this site briefly to introduce my wife Heather's first published novel - Goody Bledsoe. Attached is a brief description from the publisher's (Oberon)'s web site.

Heather Doherty

Goody Bledsoe

Goody Bledsoe is the story of a young girl who is sent as an orphan to live with her aunt and uncle on a farm in rural New Brunswick . Heather Doherty says of it: “This is a story of survival, of choosing to survive in spite of the darkness, in order to find the light that lies beyond.” In another mood she says: “Goody Bledsoe is a novel of daring, daring to see what lies within, even when that knowledge hurts like hell.”

This is what David Adams Richards has to say about the book: “ Heather Doherty has written an exceptionally moving and brilliant first novel, a startlingly permanent novel that must be read.” Heather Doherty was born in 1964 and grew up in New Brunswick , where she still lives with her husband and two sons. As this is written she’s working in the local library and writing her second novel.

Saturday, January 06, 2007

ABA Most Effective In Educating Autistic Children

In New Brunswick an interdepartmental committee was struck (Health, Education and Family Services) to study services available for autistic persons in New Brunswick and make recommendations. It sat from 1999 to 2001 and issued its report in November 2001. Its report then went unread by the lead Minister of the day, Health Minister Elvy Robichaud, for a further year. The committee studiously avoided making any recommendations about the effectiveness of any particular intervention.

The criteria for "Community" Autism Centres seeking funding from the government has required that these centres not promote any specific intervention and instead provide information on various interventions. Meanwhile our good neighbors in the State of Maine took a different approach. There the stakeholders group involved in education of autistic children examined the professional literature concerning efficacy of autism interventions and concluded in the MADSEC Autism Task Force Report 1999, revised Feb. 2000, that ONLY Applied Behavior Analysis (ABA) could be said to be evidence based effective intervention for educating autistic children. Since then specific studies have confirmed the superiority of ABA in educating autistic children. The Lovaas site has an excellent summary of the most significant of the hundreds of studies which substantiate ABA as the intervention of choice in educating autistic children:

Research Articles

Between 1985 and 2005, there were over 500 articles published concerning Applied Behavior Analysis and autism. Here is some of the key information from those sources.

1987 study by Dr. Lovaas

Lovaas, O. I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3-9.

Original research in peer-reviewed journals indicating that 90% of children substantially improved when utilizing the Lovaas Model of Applied Behavior Analysis, compared to the control group. Close to half attained a normal IQ and tested within the normal range on adaptive and social skills.

1993 follow up study

McEachin, J. J., Smith, T., & Lovaas, O. I. (1993
). Long-term outcome for children with autism who received early intensive behavioral treatment. American Journal on Mental Retardation, 97 (4), 359-372.

Follow-up research in early adolescence showed that children in the 1987 study maintained their skills and could succeed in life without costly special education and residential services.

1998 cost-benefit analysis of intensive, early behavioral intervention.

Jacobson, John W., Mulick, James A., & Green, Gina. (1998
). "Cost-Benefit Estimates for Early Intensive Behavioral Intervention for Young Children with AutismÑGeneral Model and Single State Case." Behavioral Interventions, 13, 201-226.

Demonstrates that providing behavioral treatment to all children with autism for three years, delivered between the ages of 2 to 6 years, would save approximately $200,000 per child for ages 3-22 years and up to $1,000,000 per child for ages 3-55 years. The savings per child even takes into account that some children will not benefit at all from behavioral treatment and some will only make modest gains.

1999 report from the New York State health department
Recommends a minimum of 20 hours per week of individualized behavioral interventions using ABA techniques, based on strong evidence in the research

2000 report from the Surgeon General
Acknowledges the efficacy of applied behavioral methods in the treatment of children with autism and cites the "well-designed study carried out by Lovaas and colleagues"

2002 study by Dr. Eikeseth directly comparing two treatments

Eikeseth, Svein, Smith, Tristram, & Eldevik, Erik Jahr Sigmund. (2002). Intensive Behavioral Treatment at School for 4- to 7-Year-Old Children with Autism. Behavior Modification, 26, 49-68.

Demonstrates that a focused behavioral treatment program is far superior than an eclectic special education approach that uses a variety of treatments. (Children in both groups received the same number of hours of treatment by qualified personnel.)

2005 replication study by Dr. Jane Howard directly comparing two treatments

Howard, Jane S. , Sparkman, Coleen R., Cohen, Howard G., Green, Gina, & Stanislaw, Harold. (2005). A Comparison of Intensive Behavior Analytic and Eclectic Treatments for Young Children with Autism. Research in Developmental Disabilities, 26 (4), 359-383.

Again demonstrates that a focused behavioral treatment program is far superior than an eclectic special education approach that uses a variety of treatments. (Children in both groups received the same number of hours of treatment by qualified personnel.)

2005 study by Dr. Sallows, replicating the 1987 Lovaas study results

Sallows, Glen O. & Graupner, Tamlynn D. (2005). Intensive Behavioral Treatment for Children with Autism: Four-Year Outcome and Predictors. American Journal on Mental Retardation, 110 (6), 417-438.

Replication study of the Lovaas Model of Applied Behavior Analysis by an independent author. Dr. Sallows states, "We found that 48% of all children showed rapid learning, achieved average posttreatment scores, and at age 7, were succeeding in regular education classrooms. These results are consistent with those reported by Lovaas and colleagues (Lovaas, 1987; McEachin, Smith, & Lovaas, 1993)."

2006 study by Dr. Cohen Howard, again replicating the 1987 Lovaas study results

Cohen, Howard, Amerine-Dickens, Mila, Smith, Tristram. (2006). Early Intensive Behavioral Treatment: Replication of the UCLA Model in a Community Setting. Journal of Developmental & Behavioral Pediatrics, 27 (2), 145-155.

Another replication study of the Lovaas Model of Applied Behavior Analysis by an independent author. Children in behavioral treatment scored significantly higher in IQ and adaptive behavior scores than the comparison group. Further, 29% (6 of 21) children were fully included in regular education without assistance and another 52% (11 of 21) were included with support. This compares to only 5% (1 of 21) children in the control group who were placed in regular education.

Despite this wealth of literature supporting the efficacy of ABA as an educational intervention for autistic children there remains opposition to its use for that purpose. There are many ulterior motives some cost based others emotion based. Arguments are also advanced on the basis that studies generally are not based on a random assignment to control groups. What these criticisms ignore are that as the trial judge in the Auton case concluded after reviewing the expert evidence in that case, whether done by design or not the assignments did not indicate any bias in group assignment - the assignments were not substantially different than they would have been under pure random assignment. Such criticisms also gloss over the ethical problems posed by random assignment to groups in which children would receive educational interventions which are generally believed not to be effective in educating autistic children.

The criticisms also ignore the reality that children have to be educated now. Parents will not accept waiting another generation for academics and anti-ABA die-hards to be convinced. Our children need to be educated now. Hundreds of studies support the efficacy of ABA in educating autistic children. It is long past time to give our children the opportunity of a real education and development to the best of their potential.

Friday, January 05, 2007

Autism Every Day at the Sundance Film Festival

Autism Every Day will be featured at the Sundance Film Festival on beginning on January 21, 2007 with further screenings on January 22 and 27. The film presents the struggles of families raising autistic children. The special screening at the Sundance Film Festival should help raise autism awareness from the perspective of family life and family members who are both blessed - and challenged - by their autistic child or sibling. Recently an article appeared in the Richmond Times-Dispatch which focussed on the pressures and stresses on families resulting from raising a severely autistic child. Very recently Kim Stagliano posted a commentary on the Huffington Post about the challenges of raising three autistic children. Her attempts to prevent the very real, and serious challenges of feces smearing of three autistic children, in a humorous light met a firestorm of criticism from high functioning autistic persons on the internet who felt offended by Ms. Stagliano's comments not about them but about her own children.

Hopefully the efforts of the producers of Autism Every Day, the Richmond family, Ms. Stagliano and others like them will continue. People should know the truth. Autism is not just about savants or those capable of posting complex sophisticated monologues on the internet. It also includes those with severe communication, intellectual and behavioral challenges. The realities of these autistic persons - and those who actually care for them in their daily lives - should also be known to the world. Autism Every Day and its highlighting at the Sundance Film Festival should help ensure that those realities are not hidden out of public view.

Details of "Autism Every Day" and the Sundance Film Festival can be found atthe Autism Speaks web site:

Please Stop Police TASER Use

LETTERS TO THE EDITOR - Telegraph Journal, New Brunswick

Published Saturday December 30th, 2006
Appeared on page A5

Please, cabinet, stop police TASER use

Dear Honourable Premier and Honourable Ministers:

As the father of a 10-year-old autistic boy with severe communication challenges I have long been aware that persons with autism and other disorders which impair communication skills have on occasion been TASERED by police forces in North America; in some part because police will use TASERS when dealing with "unruly" persons who do not respond to commands, just as they sometimes use forceful takedowns in effecting arrests of such persons. I am concerned about the use of such dangerous weapons on New Brunswick citizens by our police forces.

The announcement by New Brunswick's Chief Coroner, Dianne Kelly, that she has set a date for an inquest into the death of Kevin Geldart, 34, who had been reported missing from a Moncton hospital ward on May 5, 2005 and who died after Moncton police used a TASER gun on him later that day, increases my concern, as does news that the Fredericton City Council has voted to authorize the purchase of TASERS for use by Fredericton City police officers.

TASER use has raised concerns around the world and its use has preceded the deaths of approximately 50 people in North America since 2001. A TASER is a weapon which discharges a high voltage shock, causing immediate and total loss of muscle control.

Amnesty International has called for cessation of TASER use by police forces pending further study of their safety and has stated that the use by police forces of TASER weapons contravenes international standards prohibiting torture or other cruel, inhuman or degrading treatment as well as standards set out under the United Nations (UN) Code of Conduct for Law Enforcement Officials and the Basic Principles on the Use of Force and Firearms by Law Enforcement Officials.

Please be safe not sorry. You have great and necessary responsibilities to weigh on your consciences. The unnecessary death of New Brunswick citizens should not be among them.

I ask that your government prohibit the police use of TASERS or at least suspend such use until your government has studied their safety and you personally feel comfortable with their use on New Brunswickers.


Wednesday, January 03, 2007

More Conor Holiday Fun

The holiday period was a lot of fun this year. We traveled to Nova Scotia and visited family. Conor loves to go on drives in the "silver car", especially long drives. Here is Conor enjoying the trip in the car, wrestling with Dad in the hotel room and back home munching some Doritos (Conor's favorite treat) at one of his favorite treat spots.

Tuesday, January 02, 2007

Breaking Autism Taboo - Speaking Truths About Raising Severely Autistic Children

Michael Burke of Henrico County Virginia has broken the autism taboo about speaking openly and publicly about the challenges, stresses and pressures of raising severely autistic children. He has spoken about the pressures and stresses placed on family members and the injuries and risks his family were exposed to. Mr. Burke's public disclosure of these realities will meet with sympathy from some but will also likely result in public criticism, even ridicule and condemnation from some self appointed experts who do not believe that autism is a disability just a variation on human nature that should be appreciated.

As the father of a severely autistic 10 year old boy I understand first hand some of the realities Mr. Burke describes. My son Conor brings me great joy and strength but his severe autism also poses great challenges. I thank Mr. Burke for speaking openly and honestly and for providing other parents an outline of some of the realities that may confront us as our severely autistic children grown older. The Richmond Times Dispatch also deserves credit for covering this aspect of the story. Attached are links to the Richmond Times-Dispatch story and Mr. Burke's letter. I have also posted an excerpt from the article and the edited version of Mr. Burke's letter.

Richmond Times-Dispatch

"Autism leads to hard decision
Terrible heartbreak, major relief

Mike Burke used to tell people he hadn't had a decent night's sleep in 10 years.

They thought he was kidding.

He didn't tell them about his failing health, his falling income or his wife's nervous breakdown. He didn't talk about being choked by his young son as he drove down the highway or cleaning up after the boy following yet another out-of-control outburst at 2 o'clock in the morning -- or simply trying to comfort a child who couldn't be comforted.

He didn't say much about the living hell his home had become as he and his wife, Pam, tried to raise a child with severe autism.

"It was horrible," said Burke, who works as an investment adviser. "We just tried to stick it out."

However, the sleepless nights and unending days finally wore them down. Eventually, the Burkes, who live in Henrico County, did what years before would have seemed unthinkable to them: They placed their only child, Ryan, in a youth group home shortly after his 16th birthday in 2003. It was a terrible heartbreak and a major relief.

"As much as we love him," said Pam Burke, "I couldn't do it anymore."

Letter from Michael L Burke

"Editor's note: This is an edited essay written by Michael L. Burke of Henrico County. He invited The Times-Dispatch to publish his letter in hopes of letting other families know they are not alone.

Hello, my name is Michael Burke, and my son's name is Ryan and this is our story.

The past 19 years have been the most difficult and painful time in my life, and I would like to share it with you. I write this story as part of my therapy in my efforts to deal with these past years of heartache and pain.

Everything you read in this article is true although some parts of it may be difficult to believe.

March 3, 1987:

I remember the weather was mild back in March of 1987, as winter was easing and signs of spring were in sight. On March 3, 1987, our son, Ryan, was born . . . and it was a great day.

My wife, Pam, and I had been married for 11 years then, and Ryan was our first child. When we brought Ryan home from the hospital, our neighbors had placed a banner across our front yard saying, "It's a Boy!"

Later that day, both our families came over to meet Ryan and congratulate us on our new addition to the family. Ryan was the first new baby on either side of our families and everyone was anxious to see him.

My first thoughts during that first week were that of excitement. I was going to be a great dad and teach Ryan how to play football and baseball and all the sports. I was also focused on giving Ryan the best education that I could afford.

The first several years of Ryan's life went somewhat normal, but he was having trouble sleeping and staying asleep. He often had ear problems and cried a lot during the night and sometimes during the day. We figured that these problems would pass and things would become more normal as he got older.

Between the ages of 3 and 4, we noticed that Ryan was not socializing with other kids and his vocabulary was lacking. His overall condition was worsening and on the advice of his pediatrician we took him to see several different doctors who specialized in childhood problems. I had taped Ryan crying and screaming all night long and played it for the doctors so they could actually hear what a typical night was like. After examining him and testing him, the diagnosis was autism.

Our dreams, our world, everything was crushed as we listened to the doctors tell us about what we could expect in the future. We did not want to accept this diagnosis and tried in vain to help our son. We did brain scans and MRIs and took Ryan to New York and Cleveland [to see specialists]. But nothing worked.

As the years passed, his condition continued to decline and more problems began to surface. In addition to the crying and not sleeping, Ryan started experiencing severe ear problems causing him extreme pain. The doctors simply said that these episodes were a part of autism and there was nothing they could do.

During these episodes, Ryan would lash out at us, punching us and breaking furniture and household items and anything he could get his hands on. I remember driving down I-64 with Ryan in the back seat experiencing an ear attack and him reaching up and choking me as I was driving. These events were constantly happening to both of us and to any courageous caregiver willing to watch Ryan for any length of time.

By the time Ryan was 7, my wife had broken down and was suffering with anxiety, depression and fatigue. The years of no sleep and frustration had taken its toll on both of us as the stress would not let up. In addition, my income was dropping along with my job performance and now we were living in a small rental house that I had purchased years before . . .

As Ryan entered his teen years, things became more difficult, as his physical size and strength were that of a young man. We have now lost most of our help as our families and our caregivers can't handle his size anymore. Because of his size, we were now pleading with his social worker for more help and for a possible placement for him . . .

At this point in time it was not about Ryan anymore, it was about us -- on a scale of one to 10, our quality of life was a 5. I had lost all hope now and I wondered what Ryan's purpose on this earth was, because it didn't make any sense.

By the time Ryan reached 15, the situation had gotten even worse as all of Ryan's problems were in full force. At this point in time, Ryan was on a list for placement into a children's group home scheduled to open in the spring of 2003. We needed to make it one more year and this was the hardest year of all.

It was difficult because my health was failing and we had no help at night in dealing with the stress. I was having chest pains and extreme high blood pressure and spending many daytime hours at the doctors' office. I would have to get up at night and change my socks because they were soaked in sweat from the elevated blood pressure.

As Ryan arose at 2 a.m. or 3 a.m. on those nights, I was on my own, the last man standing -- I was like a dying soldier trying to make my last stand as I fought off my physical problems to deal with his. My wife attempted to assist me during those midnight episodes, but the years of wear and tear on her made this task almost impossible.

How we made it through, I'll never know.

Finally, on March 12, 2003, the group home opened, and Ryan was the first one enrolled. That first night was difficult on Ryan as he did not want to accept his new living arrangement. He kept telling me, 'Daddy, I want to go home.' I looked him in the eyes and said, 'Son, I can't do that. This is your new home now,' and we all cried.

Today, Ryan is 19, and has accepted his new living arrangement and is doing somewhat better. His ear problems have ceased, he is using the bathroom more and is participating in school better. We see Ryan on Sundays now for pizza and ice cream, and we all enjoy the visits very much.

I would like to thank the following people for helping us during these trying times.

Thank God for St. Joseph's Villa and their respite program, as they were the main source of respite for us. In addition, Pam's mother, Bertha, and her sister, Linda, and her husband, Waverly, were also there and helped us on my occasions. Also thanks go to the LUV group at the West End Assembly of God and to the many caretakers who came into our home to assist us over the years.

If you know someone raising an autistic child, please offer them some assistance."

Monday, January 01, 2007

No Autism Puzzle Just Conor's Puzzle Fun

The jigsaw puzzle is the recognized symbol for autism in the US and Canada. Speaking as a parent I have always felt that it is an appropriate symbol. During the holidays though there was no need to talk about autism as a puzzle. Our family enjoyed the holiday period together and none more than Conor shown here putting some jigsaw puzzles together, a diversion he totally enjoys!!!