Real Autism Questions for the Good Professor Baron-Cohen

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.

Autism and Unusual Facial Asymmetry Controversy

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.

Autism and Unusual Facial Asymmetry?

Conor Doherty, Autism Disorder, Unusual Facial Asymmetry?


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 Rising in Brunei

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."

The Brunei Times, September 9, 2007

Autism Connections Fredericton Gala Dinner with Janet Coates

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 - Can He Be Trusted?

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

This Autism Blog Is Boring, Do Not Read It Unless ...

.... 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.

Ontario Autism Coalition Ask Letter

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.


Ontario Autism Coalition Member Update September 05, 2007

Please distribute to all lists.

Formal Presentation of OAC "Ask" to All Political Parties in Ontario The 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.org Cc: 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 ask for 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

Conor's First Days At Middle School, So Far So Good

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.

So far, so good.

Conor Is Ready For School!

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!)

Canada's Autism Wasteland To Take First Step Forward

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.

Take My Son - A Family's Painful Autism Reality

"Take my son".

- Teresa Abernathy

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.

Autism Transitions - Middle School

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.

Autism, Head Size and Growth Hormones

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.

Autism ABA Accreditation for Brock University

The following press release from Brock University offers encouraging news for families with autistic children in Ontario as Brock University announces it has received Behavior Analysis Certification board accreditation. It is easy for government and other service providers to reach for cheap, easy, internet glamorous answers to the demand for competent professionally trained ABA providers. The development of programs such as that at Brock University will help ensure that autistic children in need of ABA intervention actually obtain proper ABA services.

Centre for Applied Disability Studies at Brock University receives Behavior Analysis Certification Board accreditation

    ST. CATHARINES, ON, Aug. 28 /CNW/ - With the recent approval of its
Applied Behaviour Analysis graduate course sequence by the Behavior Analysis
Certification Board (BACB), the Centre for Applied Disability Studies at Brock
University in St. Catharines, Ont., is positioning itself to help meet the
growing demand for qualified behaviour analysts in Ontario.

  Students obtaining a Master of Arts in Applied Disability Studies, Master
of Applied Disability Studies or the Graduate Diploma and who specialize in
the Applied Behaviour Analysis (ABA) field will now be eligible to apply to
become a Board Certified Behaviour Analyst.

  Brock's master's programming in Applied Disabilities Studies, which
offers specialization in ABA, is the only graduate program of its kind in the
province, and only the third in Canada, to offer an approved course sequence
to become a BCBA-certified behaviour analyst.

  "This is big news for the disabilities community because there is a
tremendous need for well-trained and accredited behaviour analysts in
Ontario," says Maurice Feldman, Director of the Centre for Applied Disability
Studies. "The BACB qualification is becoming increasingly important for many
positions involving interventions for persons with a variety of disabilities,
including autism, intellectual disabilities and acquired brain injury."

  The Centre offers the BACB-approved course sequence at times and places
convenient to working students, including week-long and weekend courses in
some cases. Courses have been offered in Toronto and Hamilton, as well as in
St. Catharines, and there are plans to offer a satellite program in the Ottawa
area in the near future.

  "This is welcome news for our organization, since BACB-certified staff
are needed to supervise Intensive Behavioural Intervention (IBI) programs in
the province's nine regions currently serving more than 1,000 children with
autism," says Margaret Spoelstra, Executive Director, Autism Ontario.

  Faculty members in the Centre for Applied Disability Studies at Brock are
internationally respected researchers and teachers in disabilities and applied
behaviour analysis. Faculty have published extensively and many serve as
consultants to governmental and non-governmental organizations.

For further information: please visit: www.brocku.ca/disabilitystudies,
or contact: Maurice Feldman, Director, Centre for Applied Disability Studies,
(905) 688-5550, ext. 3785, mfeldman@brocku.ca; Jeffrey Sinibaldi, Media
Relations Officer, Brock University, (905) 688-5550, ext. 4687,
jsinibal@brocku.ca

Autism, Bricks and Common Sense

I admit I do not understand the thinking of some alleged "educators".

A video recently showed an autistic girl in Iowa locked in a time out room for 3 hours even after she had wet herself and even after she tried to comply with the rules. Now comes a report, in the News-Press, of an 8 year old autistic girl who, according to her parents, was manhandled by educators in a Lee County Florida school and placed in a BRICK WALLED time out room where, surprise, surprise she hurt herself by banging her head on the brick wall. These are still only allegations and the school district is conducting an investigation. On a positive note one Lee County school board member faced up to his responsibilities by motioning, albeit unsuccessfully, for the independent investigation and stating publicly the need to train personnel who work with autistic children.

Caitlyn Elders, an 8-year-old with autism, was placed in a brick-walled time-out room and manhandled several times by staff at Pelican and Trafalgar elementary schools, her parents told the Lee County School Board Tuesday evening. Kellie Elders, held up photographs of her daughter's bruised forehead for board members, district staff and media members to see. She said Caitlyn sustained those bruises after she banged her head against the brick wall, an action that is not unknown for children with autism who feel distressed.

A BRICK walled room? Who has to be told that an upset autistic child could hurt herself on the walls of a BRICK walled room? Thankfully the educators involved did not have to be told not to leave any sharp objects in the room.

Autism Dart In Ontario Politics

Autism has become a handy dart to be thrown by the opposition at Ontario Premier Dalton McGuinty. The Promise Breaker opened himself up to attacks on his character by his stunning reversal on his pledge to aid autistic children, even going to court to fight the parents of autistic children he had pledged to help. The Premier had no qualms about giving money out to other groups even giving $1 Million in taxpayer funds to a cricket club that had asked for only $150,000. Now Conservative Opposition leader John Tory is throwing darts, including an autism dart, at the Promise Breaker. In Tories on the Attack the Toronto Sun reports:

The John Tory Conservatives took to the radio airwaves yesterday with a series of negative ads tackling the record of the Dalton McGuinty government.

In one spot on the so-called Colle-gate scandal, Tory talks about a controversial $1-million grant to a cricket club that had asked for $150,000. The Opposition leader criticizes the Liberals for sending taxpayer dollars to some groups that later revealed Grit connections.

"Mr. McGuinty just sent your money to his friends while kids with autism, families without doctors and farmers in trouble were told there was none," Tory says in one of five different ads.

The Promise Breaker deserves the heat he is getting for his betrayal of parents of autistic children but those parents should look for more than attack ads from Tory's Tories on the autism front. They would be wise, despite being betrayed by the Promise Breaker last time around, to again seek clear commitments from ALL party leaders on their autism plans. Then they will at least have something they can use to hold the next Premier accountable. Autism should be treated by all leaders like the serious matter that it is; not just an election dart to be thrown at political adversaries - no matter how much they deserve it.

Autism Gene Hunt

The last year has been filled with news of autism research breakthroughs coming at such a quickening pace that they are creating an Autism Knowledge Revolution. Much of the research has focussed on genetic contributions to autism with Professor Michael Wigler's spontaneous mutation theory commanding center stage. In Hunting the gene that traps children in their own world Times Online examines these breathtaking research developments in historical perspective and speculates on what we might expect in the next year as "gene chips" are applied to the databases of the Autism Genome Project:

The scientific success story of 2007 has been the coming of age of a new method of gene-hunting that can find the sort of genes with weak effects that are thought to influence autism. These genome-wide association studies compare the DNA of thousands of people who have a disease with healthy controls, using tools called “gene chips” to screen the entire human genome for hundreds of thousands of tiny genetic variations that differ between the two groups.

In recent months, the technique has revealed scores of genes that subtly influence common conditions such as diabetes, heart disease, breast cancer and multiple sclerosis, often raising the risk by as little as 10 per cent.

Autism is the next target. The Autism Genome Project (AGP), an international consortium that studies more than 1,000 families with at least two autistic members, is about to apply the tool to its database.

The TimesOnline article provides an excellent summary of the theory that autism actually consists of three separate developmental disorders which are most devestating when they all occur together:

What Professor Wigler’s theory does not account for is another aspect of new thinking about autism: that it may not be a single disorder, which if proven correct would certainly explain the spectrum element of autism disorders

For autism to be diagnosed, children must meet three criteria: they must show social impairment, communication difficulties and nonsocial problems such as repetitive and restricted behaviour. Yet there is an emerging consensus that these traits do not always go together and that there are people who meet the criteria for one or two characteristics but who do not receive any diagnosis. Autism, in short, may be the confluence of three separate developmental conditions. Only when they occur together is the result devastating.

Research by Angelica Ronald, Franc-esca Happé and Robert Plomin, of the Institute of Psychiatry, has suggested that each of these three problems is influenced by different sets of genes. The twin studies have shown that while each trait is highly heritable, they do not often overlap.

The multiple developmental disorders seems correct on an intuitive basis. It will be interesting to see if the studies provide evidence to support the theory.

Autism Education; The Inclusion Illusion In New Zealand

In New Zealand schools, parents and students are wrestling with the realities of inclusive education for autistic school children. Stuff.co.nz reports in Schools failing disabled that many students are being sent home from school early in the day or being told to stay home when there is no teacher aide.

A mother of an autistic 12 year old boy tells of him being sent home regularly, and being placed on shortened school days, for disruptive behavior, including hitting. Parents now tend to enroll their children in special education units. Teachers and parents talk about the need for more resources.

Here in New Brunswick, Canada, the inclusion lobby has been very powerful, and successful, at pushing the philosophy that all children benefit from mainstream classroom education. This mainstream classroom education benefits all philosophy is not supported by evidence and is not supported by the experience of some autistic children including my 11 year old son Conor.

Conor was being educated in a mainstream classroom and was frustrated each day, coming home with self inflicted bite marks on his hands and wrists. He was removed from the classroom to a quieter location where he receives instruction with the assistance of a teacher aide. He visits the mainstream classroom for visits with his peers, for defined periods of time and for activities within his range of abilities. Sometimes they visit him in his area for reading buddies and other similar activities.

The point is not that what works for Conor would work for all autistic children. The point is that it is necessary to take an evidence based approach to determine what works for each child. Some autistic children can function well in the mainstream classroom; some do not. Some require one to one ABA based instruction or other types of individualized instruction in a quieter area where they are not overwhelmed by their environment.

The belief that mainstream classroom inclusion works for all, including all autistic children, is an illusion. It is not supported by evidence. Look at what works for each child and educate the child accordingly.

Autism and Stimming; A Conor Case Study

Stimming, like all autism topics, is a matter of some controversy. Some see it as a negative behavior to be eliminated, others see a natural form of expression for an autistic person, others a relief from environmental pressures and so on. I see no harm in stimming and Conor enjoys it so I don't try to prevent it. To the contrary when we visit a store or mall I look for a straw, his favorite stim object, for Conor to enjoy.









Conor stimming in the nearby volleyball pit. Any time we walk by Conor goes over to stim (sifting sand). He will usually sift the sand for as long as I let him. Stimming by sifting sand, for what seemed like endless periods, was one of the first indicators to us that there was something "different" about Conor and helped lead us to seek a medical assessment.











Conor enjoying some treats, and stimming with a straw, during a break while seeing Shrek 3 at the theater.












Conor multi-tasking, reading a Dr. Seuss book, while stimming with a straw with his other hand.
















Conor sitting on the side step and stimming with a straw, while waiting patiently for Dad.