Ivan Corea, head of the Autism Awareness Campaign UK calls on Prime Minister Gordon Brown to take decisive action on autism on YouTube. The Film on You Tube features Lee Scott MP, Member of the House of Commons Select Committee on Health who is championing the cause of autism in parliament.
Also featured is the Nimal Mendis song for autism 'Open Every Door' sung by Birmingham based musician Rozagy who has Asperger's Syndrome. Nimal Mendis is one of Sri Lanka's distinguished singer/songwriters - this is the first ever song for autism written and composed by a South Asian songwriter.
Ivan Corea said, ' I urge Gordon Brown to launch a national strategy on autism and a 10 year plan of action to include building specialist autism schools and an AUTISM COMPACT with employers to open the labour market to people with autism and Asperger's Syndrome who can work. We also need a debate on autism and the elderly. Who will look after them when they grow old?'
Autism is a neuro-developmental disorder. 0ver 500,000 people in the UK have autism; over 90,000 children are on the autism spectrum; according to UK Researchers 1 in 100 children may have autism.
A group of approximately 25 autism parents protested at Dalton McGuinty's Ottawa South constituency office yesterday according to a report by the Ottawa Citizen. The protest was part of the Autism Day of Action organized by the Ontario Autism Coalition. Meanwhile Howard Hampton and the NDP left no room to doubt their commitment to autistic children and students.
A McGuinty spokesperson appeared and listed some of the actions taken by the McGuinty led Liberal government during the past term of office including elimination of the age cutoff with about 60 per cent of children in the IBI program now being six years of age or older. The number of children receiving IBI was stated to have gone from 531 in 2004 to 1,400 today, the McGuinty government more than tripled spending on autism services for children and youth from $44 million in 2003-04 to $140 million in 2007-08, and created a college program to train new therapists.
Those numbers are significant but they do not actually address the enormous challenge in Canada's most heavily populated province. The Citizen article tells the story of the Lander family of Kanata who spend $40,000 a year for behavioral, speech and occupational therapy for their autistic son. With waiting lists for diagnosis and receipt of services the wait for autism services has grown to four years. Four years! Unless a child is diagnosed at birth they would miss completely the important early development period for treatment between ages 2 and 5. The Ontario Autism Coalition wants waiting lists eliminated, proper training and accreditation of therapists, and specialized instructors to work with autistic children in schools.
Sam Yassine, an Ottawa member of the Ontario Autism Coalition executive committee points out recent Liberal spending commitments for autism have come at the end of the McGuinty government 's term.
"For the last four years he denied our children, "Now, before the election, he announces $10 million. We find this very cynical. It's another promise to be broken."
Andrew Kavchak, who has maintained a vigil for years at the Parliament Buildings in Ottawa seeking a national autism strategy, including Medicare coverage of ABA treatment for autism, is blunt in expressing his feelings about the Promise Breaker:
Despite the focus on the Promise Breaker and his betrayal of autistic children and their families there was good news from NDP Leader Howard Hampton yesterday:
Hampton Offers New Resources For Children With Autism
Bradford
September 15, 2007 - 12:00am
Ontario NDP Leader Howard Hampton joined NDP York-Simcoe Candidate Nancy Morrison and other families at a local playground to announce the NDP’s plan to support families with autism.
The NDP will put children and families first by providing publicly funded Intensive Behavioural Intervention (IBI) services in classrooms for all children with autism, and clear the waiting list for autism services.
“Every child who needs IBI autism therapy should have access to it. That’s the only fair thing to do. It’s a practical, doable and sensible thing we can do that will make an immediate difference to the day-to-day lives of today’s families.” said Hampton.
During the last election, McGuinty wrote a letter to Morrison promising to provide autism services to Ontario children who need it. McGuinty broke his promise. As of March 31, 2007, 1,100 children were languishing on waiting lists for autism services. That's an increase of 1,200 per cent from when the McGuinty Liberals took office.
McGuinty even wasted $2.4 million of public money fighting parents in the courts for the right to break his promise.
“Dalton McGuinty wasted $2.4 million dragging families through the courts instead of addressing the pressing need for autism services for today’s working families. That much money could have funded special treatment for 50 children with autism for a year,” said Hampton.
“McGuinty’s priority was to give himself a $40,000 raise and slush fund money to his friends. New Democrats will stand up for a fair deal for today’s working families.”
Howard Hampton, and the NDP, are absolutely right. Provision of therapy to autistic children is practical and doable IF it is a real priority of government to get it done. In the past that has not always been the case. The Ontario Autism Coalition, and parents of autistic children, are making sure that persons with autism occupy a more deserving spot in the hierarchies of government priorities in Ontario. Mr. Hampton and the NDP have indicated clearly and unambiguously where autism needs would be placed in an NDP government list of priorities.
The Ontario Autism Coalition and the Ontario NDP both deserve credit for advancing the best interests of autistic children in Ontario.
Autism issues are heating up the Ontario election campaign, thanks in no small part to the efforts of the Ontario Autism Coalition, which has been very well organized and effective in getting autism issues in front of political participants. Today the NDP and Liberals squared off over the issues of age cut off and school provision of ABA/IBI services for autistic children.
The Canadian Press is reporting a commitment by NDP leader Howard Hampton to provide publicly funded Intensive Behavioral Intervention in classrooms for all autistic children. The NDP has committed to providing IBI therapy for an autistic child from the day they qualify and an end to waiting lists. Children and Youth Services Minister Mary Anne Chambers retorts however that there simply aren't enough trained autism support workers to provide one on one treatment to every child who needs it.
In New Brunswick we have faced the same issues over the past several years. The UNB-CEL Autism Intervention Training program grew out of the need to train Autism Support Workers and Clinical Supervisors in the pre-school and school years. That training has been taking place over the past several years with training of another 100 Teacher Aides (Autism Support Workers) and Resource Teachers (Clinical Supervisors) scheduled to start in October. Premier Shawn Graham and Education Minister Kelly Lamrock have committed to train another 300 TA's and teachers over the next 3 years. In proportion to Ontario's population that would be roughly the equivalent of a commitment to train a further 4,000 Autism Support Workers and Clinical Supervisors to work in Ontario schools. We are very confident that New Brunswick Premier Shawn Graham and Education Minister Kelly Lamrock will keep their promise to New Brunswick's autistic school children.
The McGuinty government should quit making excuses for why they can't address the needs of Ontario's autistic children, stop breaking promises, stop fighting parents in court and buckle down and get to work helping autistic children. Maybe Ontario parents will decide to Get Orange and vote for the NDP.
One of the interesting discrepancies, amongst many, in the autism world is the difference between the 1 in 150 rate cited by the CDC in the US and the 1 in 100 rate cited by Simon Baron-Cohen and other experts as the autism rate in the UK. What is also interesting is the 1 in 94 rate cited by the CDC for New Jersey which is obviously much closer to the UK figure. Is the 1 in 94 NJ rate more representative of actual rates across the US ?
If the rates of autism are affected, in whole or in part, by environmental considerations then it would be difficult, if not impossible, to reach any conclusions about USA rates based on the NJ figures. But if there are no environmental factors influencing the development of autism, if autism is, as some argue, simply a naturally occurring genetic variation, then it may well be that the NJ rate is representative of the USA as a whole with the higher NJ rate, which brings it much closer to the UK, being attributable to better awareness, diagnosis and other services compared to other parts of the US.
Kristina Chew is the host and author of Autism Vox, a very well written "autism" blog which presents a neurodiversity ideological perspective on autism, a perspective which does not embrace environmental considerations as possible causes of autism or rising autism rates. She is also a New Jersey resident and has commented on New Jersey's 1 in 94 rate suggesting some factors which, if true, would seem to suggest that the NJ autism rate of 1 in 94 might be a more accurate number for the US as a whole then the 1 in 150 cited by the CDC. As she comments in A Whole Lot of Autism To Account For in New Jersey:
Rather than trying to get to some “bottom,” some specific thing that we can point to and say “this is the cause of autism,” I would suggest that numerous other force are working in concert. These forces range from “better understanding of autism and diagnosis” to the expanded definition of autism to embrace the notion of an autism spectrum.
Ms Chew's list of "numerous other forces" working in concert does not include possible environmental causes. The autism spectrum factor is a constant in the US. That leaves better understanding of autism and diagnosis as explaining New Jersey's higher rate. Presumably, if Ms Chew's list is a good explanation for NJ's higher rate, than rates in other regions would climb if those regions also benefited from better understanding and diagnosis. In that case their autism rates should resemble New Jersey's 1 in 94 rate ... or perhaps at least the UK's 1 in 100.
Of course that assessment could change considerably if environmental factors are shown to play a causal role, to one extent or another, in some cases of autism.
New Jersey is making a lot of positive autism news of late. The autism legislation passed, the New Jersey Supreme Court ruling, and now the launch of the Bankbridge Development Center, an autism school in Gloucester Country New Jersey. Apart from autism specific programs and support the school is environmentally tailored for autistic students with features like non glare lighting and quiet interiors.
The opening is featured at the Courier Post On Line and includes some nice pictures from the opening yesterday of the grounds, some staff, Gov. Jon Corzine and most importantly some students. As described in the Gloucester County Press Release:
This state-of-the-art facility will serve up to 200 students from age 3 to 21 years. The Autism school maximizes classroom design to address specialized lighting, textures and bathroom accessibility so that difficulties related to the disorder are minimized and the learning environment is maximized.
In addition to an educational facility for the students, the building houses Gloucester County Autism Services, Early Intervention Services, Regional Council Services, an Education Resource Center, a Family Resource Center, and Gloucester County Special Child Health.
The educators and government decision makers in Gloucester County and the State of New Jersey deserve a pat on the back for this enlightened effort in educating autistic students.
Saturday, September 15 is the Ontario Autism Coalition Day of Action with events across Ontario. The OAC is doing an outstanding job of bringing autism issues to the attention of politicians during this Ontario election and into the public consciousness.
September 15, 2007 will be marked by events held at MPP riding offices including Ottawa, the Greater Toronto Area, Windsor, Essex, and Sarnia.
"Autism issues fall under the mandate of the UN declaration of the rights of the Disabled, a declaration to which Canada is signatory", says Laura Kirby-McIntosh, a member of the OAC executive committee." In Ontario, the current government has failed children with autism by denying them full and immediate access to ABA/IBI within the school system. This has resulted in a growing waitlist that is now in excess of 1,000 children. Parents have no option but to go into financial hardship in order to provide this necessary therapy for their children.
"Autism rights are universal and every province and territory in Canada must ensure that these rights are respected and promoted. This day of action is an important opportunity for the citizens of Ontario to remind their political leaders of these rights and press them for their commitment to them." says Ms. McIntosh.
The OAC is asking for a commitment from all political parties to the following:
1) Allow Intensive Behavioural Intervention (IBI) instructor therapists currently working within the Autism Intervention Program (AIP) entry into the school system so that scientifically valid, supervised Applied Behaviour Analysis (ABA) can be implemented. Children receiving intensive ABA through the AIP and students attending school should receive the same quality of ABA services.
2) Eliminate the waitlist in the AIP and fully fund services for all children with Autism-from the mild to severe end of the Autism Spectrum.
3) Develop a formal credentialing system and a proper training and recruitment system for the implementation of ABA to ensure accountability and capacity within the system.
People interested in Getting Political with the Ontario Autism Coalition on the Autism Day of Action can join the OAC reps at the following locations across Ontario. OAC contact coordinates for each location also follow.
The New Jersey Supreme Court has done what Canada's Supreme Court would not do, it has ordered a health insurance plan for state workers to cover the cost of therapy for a 5 year old autistic boy. As reported in the Star-Ledger online the therapy cost the boy's family about $35,000 per year. The NJSC upheld two earlier appellate rulings:
The Supreme Court upheld two appellate rulings that came down in January and May 2007. The January decision said the commission could not deny treatment for "a class of dependents, notably afflicted children, based on the nature of their mental illness."
In Canada we can sometimes be smug about our "universal" health care coverage believing our system of health care coverage to be superior to that of our American friends. But in Auton the Supreme Court of Canada ruled that governments which provide our primary health care coverage in Canada were not required to provide coverage for ABA treatment for autistic children. For autistic children in Canada, and their families, Auton meant in effect that little, if any, reliance could be placed on Section 15 of the Canadian Charter of Rights and Freedoms. 15.(1) Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.
The New Jersey Supreme Court ordered the state health benefits commission to pay the Micheletti family's bills in two weeks with 30 days to pay future bills. In Canada, by contrast, the families involved came away from the precedent setting Auton decision with something much less substantial - the sympathy of the Court - as expressed by Chief Justice Beverley McLachlin:
One sympathizes with the petitioners, and with the decisions below ordering the public health system to pay for their therapy. However, the issue before us is not what the public health system should provide, which is a matter for Parliament and the legislature. The issue is rather whether the British Columbia Government’s failure to fund these services under the health plan amounted to an unequal and discriminatory denial of benefits under that plan, contrary to s. 15 of the Charter. Despite their forceful argument, the petitioners fail to establish that the denial of benefits violated the Charter.
Nancy Morrison is the NDP candidate for York-Simcoe in the Ontario Election 2007. She is also the mother of two children, including eight year old son Sean who is autistic. Nancy is the "autism mom" who wrote to then Liberal leader Dalton McGuinty during the last Ontario provincial election campaign asking for help for her autistic son. Mr McGuinty promised to help. You know the rest of the story. Promise broken. Court fights to prevent families from obaining services for their autistic children. Court costs pursued against the families of autistic children that Mr McGuinty had promised to help.
Nancy is not taking the Promise Breaker's betrayal lying down. She is getting political in a big way, running as the NDP candidate for York-Simcoe in the Ontario Election. She has herself gone out on a limb and stated that she has full confidence in Howard Hampton and the NDP autism platform:
"I have been in discussion with him about what they will be doing, and I want the party to be able to release their stuff when they choose to release it," Morrison said.
Asked how other parents with autistic children can trust the party when they don't know what's planned, Morrison replied: "They will know what the party plans to do in the next two days ... I am very reassured. I have no worries at all about what the platform will be with the NDP."
Yesterday was a haircut day for Conor as these before and after pictures show.
Ordinary events in everyday life can become big challenges with an autistic child. Haircuts with the noise, the temporary restraint of the barber's chair, the itchy discomfort, the intrusion by another person into the child's personal space, can all add up to serious resistance by Conor.
A few years ago I would have to hold him, restrain him, in the barber's chair. He would get so upset that he would literally bite into my shoulder. Things are better now but it is still a challenge getting Conor's hair cut.
Haircuts are planned for times when few other clients will be around, in a smaller establishment, with the same lady who has been cutting Conor's hair for several years. With all that it is still not easy.
It is the skills, understanding and patience of the lady who cuts Conor's hair that makes it happen fairly smoothly. Sometimes we all take people, and what they contribute to our lives, for granted. One of the side benefits of having an autistic child is that you come to fully appreciate people who add to your child's life - and yours.
A New Zealand professor of farm management and agribusiness is claiming that milk, or more precisely a protein, referred to as a "milk devil" found in some types of cows bred for milk in NZ, is linked to many illnesses including autism.
The Dominion Post reports on a book to be released tomorrow by Professor Keith Woodford of Lincoln University in which he claims that he has assembled a mass of scientific evidence linking milk to heart disease, type-1 diabetes, autism, schizophrenia and other illnesses. The milk devil is beta-casomomorphin7, a derivative of A1 beta-casein, a gene found in cows' milk.
Health fears about milk stem from the link between a tiny protein fragment in milk - what Professor Woodford calls a "milk devil" - and many illnesses.
The devil is present in A1 milk, but not in A2, produced by about half of New Zealand's cows.
The dairy industry mixes both types together so that all milk, apart from a small amount produced by the A2 Corporation and sold mainly in Auckland, contains the milk devil.
Professor Woodford says the industry could simply remove any risk by breeding only A2 cows.
It is not clear from the Dominion Post article whether this A1 milk protein, the "milk devil" is produced outside New Zealand. Should be interesting. Milk causing autism? In What the 'milk devil' could do the Dominion Post article previews Professor Woodford's book Devil in the Milk which carries endorsements by Professor Sir John Scott, professor emeritus of medicine at Auckland University, and Professor Garth Cooper, Auckland University's professor of biochemistry and clinical biochemistry. The book reviews the "milk devil" connection with several conditions including autism:
Autism and schizophrenia. Scientists have identified that autism sufferers typically excrete the milk devil in their urine, but normal children do not.
This could come only from A1 milk. When milk is removed from their diets, most show a steady improvement and reduction in the symptoms of autism.
I guess we will have to wait and see what becomes of this casein and autism theory.
Simon Baron-Cohen is a distinguished Professor of Experimental Psychology and director of the Autism Research Center at the University of Cambridge. He is also a Neurodiversity Advocate who has recently promoted the view that autism is just a natural variation that should not be cured. As a parent of a profoundly autistic son whose life is obviously restricted and impaired by his Autism Disorder I find the Professor's remarks offensive.
His comments clearly indicate that he is at one with the Neurodiversity advocates who, while they self identify as autistic, deny that the autism disorder with which they self identify is in fact a disorder. It is one thing for these individuals to express their world views in this fashion but a director of an Autism Research Center? Clearly he is not dealing with the very serious cases of self injurious autism or approaching those individuals who must live out their lives in the institutional care of others. And he is not talking to the parents, family members and caregivers for these seriously autistic persons. If he were he would not be so quick to trivialize their life restricting realities with such superficial observations.
What really triggers my curiosity though is the Professor's career motivation. If he does not believe that autism should be cured, that it is just a natural variation of the human condition, like billions of other variations what is it about those who find themselves classified, either through professional or self diagnosis, as autistic, or Aspergers, that would prompt the Professor to spend his life studying these people? Is it just idle curiosity? Does the good Professor study people like my son out of idle curiosity?
Professor Baron-Cohen participated in the recently reported study indicating a possible causal or contributory role of prenatal testosterone in the development of autism. Why did he bother? If autistic persons should not be treated or cured; if autism is just another variation then why does it matter what role might be played by prenatal testosterone? The Professor's musings to the effect that perhaps we should not cure autistic persons, even seriously autistic, dependent, non-communicative autistic persons, is hard to reconcile with his testosterone study comments as reported in Reuters. There he indicated that collaboration with Danish researchers to tap a biological bank that has about 90,000 amniotic fluid samples to test whether there is a direct link between fetal testosterone and autism is the next step:
"This may provide us with a marker to help tell us who might be at risk."
At risk Professor? At risk of what? Developing a natural variation of the human condition that should not be cured in any event? Make up your mind Professor.
Autism, not surprisingly, has become a hot issue in the Ontario election with both opposition parties slamming Liberal leader Dalton McGuinty's notorious about face on autism as reported in the Globe and Mail and Toronto Star. But so far there has been little indication of autism plans or proposals put forth by any of the parties. That could change in the next few days though, according to the report in the Toronto Star , which noted that NDP leader Howard Hampton, after slamming McGuinty, still wasn't ready to announce his party's autism plans:
Hampton had no problem putting his $7.50 in Gabison's bowl but he wasn't willing to say exactly what his party would do for autistic children if elected.
Parents will have to wait "a couple of days" to hear his plans, he said.
...
Nancy Morrison - who received the promise letter from McGuinty in the last election — is now the NDP candidate in York Simcoe.
Parents will like what they hear from Hampton on autism, she said.
Professor Baron-Cohen, purported autism expert, has been imbibing the Neurodiversity Kool-Aid.
At the British Association Festival of Science he professed his faith in the Neurodiversity cult which views Autism as simply another variation of the human condition, not one that should be cured. The good professor posits that a cure for autism is a long way off but even if we could cure autism he asks whether we should. Should we cure autism asks the learned Professor? To answer that question I have some questions, as the father of a severely autistic child with actual Autism Disorder and limited communication abilities, for the good and learned professor of nonsense and neurodiversity.
1. Will you Professor Baron-Cohen, care for my profoundly autistic son, who will not be able to live independently, after I die? If you answer that question YES then perhaps I can say yes to your silly question.
2. Will you Professor Baron-Cohen, ensure that my son will no longer bite his hands and wrists in frustration, bang his head against a wall, smash his hands through windows, or grab the steering wheel as the family car proceeds along the highway? If you answer that question YES then perhaps I can say yes to your silly question.
3. Can you Professor Baron-Cohen, ensure that my son, living in institutional care after I am deceased , will be cared for, and loved by other persons, and not abused as was the non-communicative, middle aged autistic woman living in a New York residential "care" facility?
4. Will you good Professor ensure that my son enjoys any of the ordinary pleasures of life that you take for granted day in and day out? A solitary walk in the park without becoming irretrievably lost? A personal, intimate, relationship with another consenting adult?
If you can answer YES to these questions then I may answer YES to your "should we cure autism query" but I know you can not answer these questions in the affirmative good Professor. I know that you are just a misguided academic with a less than firm grip on the realities of families struggling to deal with actual, honest to goodness, Autism Disorder.
I ask you in all seriousness though to put aside your flask of Neurodiversity Kool-Aid and take a swig of Autism Reality Brew. Live with, or at least walk with a family caring for one or more severely autistic children before you ask your next brilliant question at some future gathering of some distinguished learned society.
By the way, I took your on line Autism Quotient test, good Professor. I scored 32 out of 50. Not that I would put much stock on the validity of your Autism Quotient test, or your grasp of Autism Realities.
Is there any discussion of autism related topics that does NOT generate controversy?
Even recent reports of a program developed by Professor Hammond in which facial scans were reported to be of use in predicting autism and other genetic disorders has degenerated into heated controversy with Professor Hammond angry about the media coverage of his program. The controversy revolves primarily around whether the program was properly reported as being capable of diagnosing autism. The Professor himself says that statement is incorrect, his program does not detect autism. In fact, at least one report, in the Independent, made it clear that Professor Hammond was not making a diagnosis claim:
Indeed, the Independent reported him as saying at last week's press conference, "This is not diagnosis. The diagnosis is done by a clinician and a molecular geneticist doing the genetic testing." Another paper had reported on the program somewhat differently claiming that the program could detect autism and would revolutionize autism diagnosis. Professor Hammond was very upset and canceled a scheduled BBC interview. In addition to the diagnosis dispute he was reported as having made some politically incorrect comments to a Yorkshire Post reporter that "you can spot a kid with Down's syndrome a mile away". Professor Hammond denied making such a remark which he described as insensitive. The reporter is not backing away from his report of Professor Hammond's remark.
At the end of the day a program that might be of some value in assisting in diagnosis of autism and other disorders begins its public life wrapped in controversy; an apparently unavoidable element of any public discussion of autism disorders.
I have never seen this one before and, on an intuitive basis, I have a hard time accepting the idea that persons with autism display unusual facial asymmetry. But that is the claim of Professor Peter Hammond of the UCL Institute of Child Health who has developed new computer software that compares the faces of undiagnosed children with those with a diagnosed condition that also affects the development of their face, with a 90 per cent success rate. He will describe his work at the BA (British Association) Festival of Science in York on Monday. Professor Hammond's program is designed to assist diagnosis of a variety of genetic disorders including autism.
As described in Innovations Report: The specially written software is based on dense surface modelling techniques developed at UCL and compares the child’s face to groups of individuals with known conditions and selects which syndromes look most similar. In order to do this, extensive collections of 3D face images of children and adults with the same genetic condition had to be gathered, as well as controls or individuals with no known genetic condition. Each image contains 25,000 or so points on a face surface capturing even the most subtle contours in 3D. The images are then converted to a compact form that requires only a 100 or so numeric values to represent each face in the subsequent analysis.
Once the software has narrowed down conditions with similar facial features, molecular testing can then be used to confirm the diagnosis. Testing for fewer conditions will save money, time and reduce the amount of stress the child and the parents are put under.
So far the technique has proved fruitful, Professor Hammond says: ‘The technique is currently being applied to over 30 conditions with an underlying genetic abnormality. The discriminatory capability of the approach has proven highly accurate in identifying the characteristic facial features of a variety of genetic conditions, including Cornelia de Lange, Fragile X, Noonan, Smith-Magenis and Velocardiofacial syndromes. It has identified unusual facial asymmetry in children with autism spectrum disorder reflecting known brain asymmetry and has helped to identify genes affecting facial development in Williams syndrome.’
Autism is not a construct of North American or European societies. Autism is a serious disorder that restricts the lives of children and their families in countries around the world from Canada and the US, to the UK, France, Israel, India, Nigeria and elsewhere. There is no country which does not have to concern itself with autism, to care and treat and help its autistic population. SMARTER Brunei (Society for the Management of Autism Related Issues in Training, Education and Resources) is winding up today its 3 day conference, the 5th Brunei National Conference on Autism 2007
Some alarm was expressed over the rising numbers of autism diagnoses in Brunei with 50 diagnosed last year and 50 already by June of this year. That figure translates into 1 in 150 births similar to the figures in the United States. As in the US, Canada and other countries there is a lack of services for persons with autism and their families. SMARTER centers can not cope with the existing registered cases of autism let alone those who are not registered. In Brunei there is a real need for a support system, capable of providing social, technical or training, financial and political support, to facilitate the children and their families.
Brunei SMARTER President Malai Hj Abdullah bin Hj Malai Othman, shown in the ZASIKA MUZDI photo, addressed the conference and spoke of the challenges of autism and the need for support services:
"Autism is the most challenging yet the most rewarding of all conditions, .... Every day activities that we take for granted like brushing teeth is such a battle. Now imagine every little bit of life skills need to be taught in detail and repeatable. It is time-consuming and draining us mentally, physically, emotionally, and financially as well.
We did not choose to have children with autism. Allah has blessed us with our children and we must take the challenge and the responsibility to care and nurture our children to be independent and productive individuals. We as a family are giving our best, but sometimes our best is not enough, we need support and understanding, not pity or sympathy."
Autism Connections Fredericton, an autism resource center, is presenting "An Evening with Janet Coates" gala dinner and silent auction on November 3, 2007 at 6 pm at the Delta Fredericton. Tickets are $60.00 a person. Anyone interested in attending can contact Lana at 506 450-6025.
Janet Coates
Janet Coates, Soprano, is a native of Moncton, NB and has been performing in theatres across Canada and the US for the past 25 years. A regular performer with the Canadian Opera Company, she has also appeared with the Stratford Festival, Bel Canto Opera Company of New York, the Peterborough Symphony, Toronto Operetta Theatre, Toronto's Tapestry, and spent four years in the Toronto and Vancouver production of Phantom of the Opera. At home in opera, musical theatre and oratio she has performed in numerous concerts and recitals both as a soloist and ensemble member. Recently moved to Wolfville, NS, she is now enjoying continued performances as a soloist as well as a voice teacher.
Autism Promise Breaker, Ontario Liberal leader, and current Ontario Premier, Dalton McGuinty, is being ripped for his infamous broken autism pledge by his opponent, Conservative Leader John Tory, in the press release which follows this comment. McGuinty did not just break his autism pledge, he fought tooth and nail the very parents of autistic children he had pledged to help. Can Dalton McGuinty be trusted - by anyone? Ontario voters will answer that question in Ontario Election 2007.
Photo - CBC
JOHN TORY 2007 CAMPAIGN:
Dalton McGuinty's Record on Autism
TORONTO, Sept. 7 /CNW/ - For a politician who claims he wants to run on his record and who claims that he's "being straight with people," Dalton McGuinty sure has a funny way of showing it.
<<>>
Now, on the eve of an election, Dalton McGuinty is making yet another promise to children with autism. And if, as he's so fond of saying, the best predictor of future behaviour is past behaviour, then why should the parents of autistic children trust Dalton McGuinty?
Leadership Matters.
For further information: Mike Van Soelen, (647) 722-1760
.... you are interested in news and commentary about autism, delivered from a reality based perspective; the perspective of a parent trying to do the best for his autistic child.
There is no question that, for some, this is a boring blog site. I have been told that, on several occasions, by no less an authority than notorious New Brunswick blogger and constant pain in the neck, Charles LeBlanc . My friend Charles may be right. I do not permit the more outrageous commentary on this site and I do not try to inflate my visit numbers to seek ad revenue (advertising free site) by pandering to the crowd of internet active autism bloggers who do not view autism as a disorder.
Most parents of autistic children are too busy working, raising their autistic children and advocating for improved public services for their children to offer their reality based autism perspective on internet blogs on a regular basis. I am blessed/cursed by the fact that I rarely sleep more than 4 1/2 to 5 hours a night giving me time for this "indulgence". I hope though that this site has been able to offer a bit of balance to offset the joys of autism crowd that has the time to dominate internet autism blogging and which praises autism and rarely addresses the realities of autism as a serious disorder which restricts the lives of so many.
I have tried to make this a blog site which is truly "about autism", about the day to day, sometimes challenging, sometimes boring realities of raising an autistic child and advocating for change. I hope I have succeeded to some small extent and look forward to a continuing exchange of information and perspective on autism issues.
The Ontario Autism Coalition is determined to get the political parties on the record in the Ontario Election 2007 with clear, specific answers to important autism questions. Ontario autism families were burned the last time out by the Promise Breaker, Ontario Liberal Leader and current Premier, Dalton McGuinty. The OAC will not be fooled in this election and is working hard at forging a political-social-moral contract with each party with respect to autism issues in Ontario. The precedent set by the OAC could be helpful in other elections across Canada, including the federal election expected, by some, to take place in the next year.
Formal Presentation of OAC "Ask" to All Political Parties in OntarioThe Ontario Autism Coalition (OAC) is a grassroots organization with over 600 active members throughout the Province of Ontario. Our members are connected to thousands of families and supporters affected by autism. The OAC is determined to ensure the delivery of services and supports to families and individuals with Autism in the Province of Ontario.As political parties in the Province of Ontario prepare for a Provincial election this fall, the OAC seeks commitment from all Provincial parties and has therefore sent the following letter to the leaders of each party (Liberal, PC, NDP, Green Party) and has asked for their response in writing by September 14, 2007. The OAC will then communicate their responses with the entire autism community and the media.
From: Laura Kirby-McIntosh To: dmcguinty.mpp.co@liberal.ola.org; kwynne.mpp.co@liberal.ola.org; gsmitherman.mpp.co@liberal.ola.org; michael.bryant@jus.gov.on.ca; john.toryco@pc.ola.org; christine.elliott@pc.ola.org; frank_klees@ontla.ola.org; lisa.macleod@pc.ola.orgCc: ndpmail@ndp.on.ca; nancymorrison@ontariondp.com; cheridinovo@ontariondp.com; francegelinas@ontariondp.com; vserda@bmts.com; gpoadmin@magma.ca; lhelferty@sympatico.ca
Sent: Tuesday, September 4, 2007 10:08:52 PM Subject: Ontario Autism Coalition: REQUEST FOR POLICY INFORMATION
Dear Candidate(s):
As we near the official start of the provincial election campaign, I am writing to you on behalf of the Ontario Autism Coalition (the "OAC") to askfor information on your party's autism policy.
The OAC is a grassroots advocacy group made up of concerned parents, relatives and friends of children with autism. The group formed in 2005 and has since grown into an Ontario-wide organization with over 600 members. We receive no government funding, and we are not a charity. We are focused on direct political action to bring about positive changes for our children. Between 2005 and 2007, the OAC organized over 20 rallies to draw public attention to the need for publicly funded programs that effectively meet the needs of individuals in the Autism community. The OAC has also met with numerous government policy advisors, senior provincial Cabinet Ministers and M.P.P.’s from each of Ontario’s three major political parties.
The OAC is committed to placing autism issues front and centre in the upcoming provincial election campaign. We will be hosting events, issuing press releases and organizing parents throughout the upcoming weeks to ensure that all candidates—as well as our fellow citizens—are aware of our concerns.
The OAC is asking for a written response from you and your party to the following three points:
1) We want the next provincial government to allow Intensive Behavioural Intervention (IBI) instructor therapists currently working within the Autism Intervention Program (AIP) entry into the school system so that scientifically valid, supervised Applied Behaviour Analysis (ABA) can be implemented. Children receiving intensive ABA through the AIP and students attending school should receive the same quality of ABA services.
2) We want the next provincial government to eliminate the wait list in the AIP and fully fund services for all children with Autism—from the mild to severe end of the Autism Spectrum.
3) We want the next provincial government to develop a formal credentialing system and a proper training and recruitment system for the implementation of ABA to ensure accountability and capacity within the system.
We are sending this request not only to you, but to all parties—Liberal, Progressive Conservative, New Democrat and Green. We would appreciate receiving an official response from you no later than Friday, September 14, 2007. Your leaders and/or local candidates are also welcome to respond by attending our Autism Day of Action the following day. On Saturday, September 15th, we’ll be holding events in several different cities—you can get more details by visiting our website at http://www.ontarioautismcoalition.com.
While we are happy to receive any feedback you may wish to share, we encourage you to respond specifically to the three points we’ve mentioned above. We will post your responses on our website and share them with our members and with the public over the course of the campaign. If you have any documents, links or video messages you would like us to place on our website, we would be happy to receive them as well.
If you have any questions or if you are interested in meeting in person, please feel free to contact me. Enjoy the campaign!
Sincerely,
Laura Kirby-McIntosh Co-founder, Ontario Autism Coalition Phone: 905-761-5226 E-mail: mailto:tosh555@hotmail.com
So far so good. Conor is fortunate to have some well trained people involved with his education this year. The aides split their time with him but most of his day is spent with 2 aides with experience and training from the UNB-CEL Autism Intervention Training program and a resource teacher equally well qualified.
The Nashwaaksis Middle School is very well organized which is in itself a good thing. There have been some hitches. Conor's work area has a noisy overhead light and that is being looked into. The changes in his daily schedule have caused him to be a bit agitated at night but, autism or not, many children (and their parents), require a period of adjustment the first week back at school. And he is still staying up a bit too late for school schedule. But overall things are working out well. Even as I am typing this comment Conor has come over to take another look at the inset image of Nashwaaksis Middle School - and smile.
I commented Saturday about Conor's transition to Middle School which will start tomorrow and the preparations that we have done to help him get ready. He appears to be pretty excited about getting back to school. These pictures are of Conor's handiwork yesterday practicing his letters and numbers.
The bananas seemed to need the number 4 on them?
Conor practiced his letter writing by tracing over the letters on his alphabet puzzle board.
One sample of Conor's printing yesterday, including a not so subtle message about what he wanted for supper. (Yup, he got what he wanted, and the KFC chicken was tasty!)
It is hard to believe that Canada has a province with NO autism program in place at all but that appears to be the case in Saskatchewan where the "Faces of Autism" conference is being presented by Newfoundland native Carolyn Forsey on October 26-27, in Meadow Lake Saskatchewan, some 10 years after similar advocacy and awareness efforts began in Newfoundland. The conference is hosted by Saskatchewan Health, Meadow Lake Tribal Council, Prairie North Regional Health Authority and Northwest School Division #203 and will feature author, teacher, trainer, keynote presenter and consultant Barbara T. Doyle MS and Ronald Leaf, Ph.D licensed psychologist and co-author of A Work in Progress, a book on behavioral treatment.
Forsey said Saskatchewan is far behind the rest of the country when it comes to autism support.
“In Newfoundland in the beginning they were diagnosed with autism and told to go home and forget about it, and Saskatchewan parents, that’s what they are living with,” she said. “In Newfoundland we began this process and it’s sad that ten years later Saskatchewan is going through the same thing.”
She added that today, Newfoundland has child management specialists and behaviour specialists to work with autistic children, and the government continuously puts money towards autism intervention. Currently, Saskatchewan Families for Effective Autism Treatment (SASKFEAT) is working towards getting the much needed support for families in the province.
“Saskatchewan is the only province that does not have a provincial program set in place for ASD,” explained Ferguson. “There’s nothing in the province of Saskatchewan for the parents.” Winkler said this conference is a step in the right direction, but it is just the beginning. “I think it needs a focus, and I think this conference will help do this,” he said.
“The government needs to be pushed and there needs to be a focus and recognition of difficulties faced by the parents of people suffering.”
Forsey said she hopes that at the very least, this conference will give the parents and those affected by autism a little hope. “We need to tell the parents, you know what, we’re going to start to try to do something really good for these kids,” she said. “Parents are going to leave there with a sense of hope. That’s the whole premise of this conversation. They’re not alone."
As someone who has been actively involved with autism advocacy in New Brunswick for the last 8 years I can empathize with the predicament of Saskatchewan families who have such a big hill to climb. Fortunately they should be able to catch up more quickly through emulation of, or at least by learning from, existing programs in other Canadian provinces and US states.
Of course it would be easier if there were an injection of funds to assist the people of Saskatchewan construct programs even remotely similar to those of oil rich, next door neighbor, Alberta. With the federal government of Stephen Harper, oblivious to the needs of autistic Canadians, that could be difficult. The mythological Big Foot has a better chance of getting assistance from Mr Harper's Conservatives.
These are the words that families with severely autistic children know they may someday have to utter. They are the words that I know I will probably someday have to speak, as the father of a severely autistic 11 year old boy, although I do not know the context or the circumstances that will give rise to them. In A Painful Choice To Save A Family the Arizona Republic tells the story of Teresa Abernathy and her family including her husband her severely autistic son Colin and his siblings brother Connor and sister Erin.
The Abernathy's did all they could to help their son overcome his severe autism but finally the disruption in the lives of family members and the violence that Colin inflicted on his mother, the bruises and bite marks, were too much. Colin's mother made the gut wrenching decision to give up her son to the care of the state. As the article indicates it was the right decision for all, including Colin, who benefited from the care and attention he was able to receive. This is a story that all who truly want to understand the realities of severe autism should read. The Arizona Republic, and reporter John Faherty, deserve full credit for telling a story that will not be told by Dr. Gupta and CNN or featured in a Hollywood movie. The Abernathy family - Teresa, Jim, Connor and Erin, all deserve credit for their courage in telling their story, and Colin's story, to the world.
Transitions are often difficult for children with autism, particularly those at the lower functioning end of the autism spectrum, for whom it is more difficult to explain major changes in their lives. When we moved from our old house to our current home in December 2005 we prepared Conor with a storybook with pictures of "old house" and "new house" and we took him for drives over to the new house to see it several times before making the move. It went well.
Tuesday will be Conor's first day at Nashwaaksis Middle School after 6 years, K-5, at Nashwaaksis Memorial School. All summer we worked with Conor trying to get him ready for the transition to Middle School. Fortunately, the Middle School also hosts two community events the Fredericton Indoor Pool which has been like a second home for Conor who loves to swim and a public library which Conor has visited often with his therapists. We visited Middle School with Conor and toured the school earlier in the summer and did so again this week. We were able to introduce him to his Methods and Resource teacher and show him the area where he will be spending most of his time.
Conor is fortunate to have two Teacher Assistants who will work with him for on shifts for most of the school day who have received training at the UNB-CEL Autism Intervention Training Program. One of them is a TA who worked with him his last year of grade school which should help ease the transition. The Resource Teacher working with Conor this year has also received AIT training and has substantial autism intervention experience. Nothing is guaranteed, particularly with such a big transition, but there is much reason to be hopeful - and thankful - as Conor starts his transition to Middle School.
Conor is 11, with Autism Disorder and profound developmental delays. This description is derived from pediatric diagnosis and psychological assessment. He is also a big boy with a big head. He comes by his size naturally because his Dad is a big man with a big head [no smart aleck comments please :-) ]. His Dad is not autistic. But is there a relationship between Conor's size and his Autism Disorder? Maybe, according to a study by Mills, James L.; Hediger, Mary L.; Molloy, Cynthia A.; Chrousos, George P.; Manning-Courtney, Patricia; Yu, Kai F.; Brasington, Mark; England, Lucinda J. published in Clinical Endocrinology, Volume 67 Issue 2 Page 230-237, August 2007.
In Elevated levels of growth-related hormones in autism and autism spectrum disorder the authors. followed up on earlier research suggesting a relationship between autism disorders and larger head circumferences by measuring the height, weight and head circumference of 71 boys with Autism Spectrum Disorder and comparing them with the measurements for a control group of 59 boys without ASD. They also took blood samples from the boys in the two groups to test for levels of IGF-1 and 2, IGFBP-3, growth hormone binding protein (GHBP) and for dehydroepiandrosterone (DHEA) and DHEA sulphate (DHEAS).
The researchers found that the boys with ASD had significantly greater head circumferences than the control group boys, greater weights and significantly greater body mass indices. There were no significant differences in height. Levels of IGF-1, IGF-2, IGFBP-3 and GHBP in the group with autism/ASD were all significantly higher than in controls. From these findings the researchers concluded that the significantly higher hormone levels could explain the significantly bigger head circumferences, weights and body mass indices of the boys with autism/ASD and suggested that future research should examine the potential role of growth-related hormones in the pathophysiology of autism.
