November 25th – DECEMBER 6TH 2007
ARE YOUR CHRISTMAS SPIRIT’s UP?
AFA (The Alliance for Families with Autism) prepares these news articles as a courtesy to your inbox and can be found archived at:
www.autismnewsarticles.blogspot.com
visit often.
Send your articles to:
Ktchmeifucan2002@yahoo.ca
My apologies for not posting sooner gang – it’s crazy around here ;)
This speech opened up a SEAC meeting in our district. After the speech, a presentation on Autism Awareness was made on behalf of Autism Coffee Chat. A local support group who has 84 families in their Circle.
I might add, a few tears were shed. A great spokesperson for us that day, WAY TO GO!!!!
Hi,
My name is Matteo, I am 9years old and I'm autistic which is why I am here today. I like astronomy, reading, math, science and history.
I am fascinated by Albert Einstein, Galileo and Leonardo Da Vinci. When I grow up I want to be a medical scientist and an astronomer. My hero is Albert Einstein. Did you know that he was autistic? He used to always ask questions in school even though it was forbidden. One day his father asked the principal what job would he be good at doing? The principal responded it doesn't matter because he will never be a success at anything. Einstein didn't eat right, he didn't talk until the age of 3 or 4 and his parents did whatever they could to keep him in school.
At times Einstein had bad behavior and he was expelled at school because of his constant questions. I can relate to Einstein because I constantly ask questions, I didn't talk until I was almost 4 years old, sometimes I get frustrated with people that don't answer my constant questions or enjoy listening to me talk about my science stuff. I often get bullied because I seem to be a little different.
But actually I'm not that different from other kids. I go to regular school, I have to do my homework, I take swimming lessons, I like to play with friends and I still have to be nice to my bratty sister. I think people should treat autistic people the same as everyone else because everyone is a little different in their own way.
I still have emotions like everyone else. After all – look at Einstein. Thank goodness his parents helped him the best they could. Look what he has done for the world. Who knows, maybe I can be the next Einstein or one of my autistic friends could be the person that will make an important discovery for the future. I don't want to change being autistic because then I wouldn't be me - so all I'm saying is give autistic kids a chance!
Thanks!
***************
A repeat notice:
The Alliance for Families with Autism (AFA) would like to share the following information with you. If you have a school age child with autism the following information will be very useful to you. All of this information can be found at the Ontario Government's Ministry of Education website. All of this information has been published in 2007. The Alliance for Families with Autism (AFA) has given a brief description from the website and have also provided you with a quick link.
1) Effective Educational Practices for Students with Autism Spectrum Disorders: A Resource Guide. This resource guide is designed to support educators in elementary and secondary schools in Ontario in planning and implementing effective educational programs for students with Autism Spectrum Disorders (ASD). It contains information, strategies, and practices that can be put to use in the school and classroom.
http://www.edu.gov.on.ca/eng/general/elemsec/speced/autismSpecDis.pdf
2) Policy/Program Memorandum No. 140. Incorporating Methods of Applied Behaviour Analysis (ABA) into programs for students with Autism Spectrum Disorders (ASD). The purpose of this memorandum is to provide direction to school boards to support their use of applied behaviour analysis ( ABA ) as an effective instructional approach in the education of many students with autism spectrum disorders (ASD).
http://www.edu.gov.on.ca/extra/eng/ppm/140.html
3) Making a Difference for Students with Autism Spectrum Disorders in Ontario Schools: From Evidence to Action. Report of the Ministers' Autism Spectrum Disorders Reference Group to: Minister of Education and Minister of Children and Youth Services.
http://www.edu.gov.on.ca/eng/document/nr/07.02/autism.html
From a listmate
Ask Lindsay Moir:
When being asked to "pick him up" from school
Friday, November 23, 2007
Question:
We are currently being pressured by our son's elementary school to provide "additional contacts" so that if/when our son's tantrums "become too much for the school" they can call someone to immediately pick him up from school. We have made it clear that we believe his behaviours are easily manageable and that picking him up will in fact, escalate his behaviours. He will quickly learn that he can "escape school" by acting out, and be rewarded by coming home. He is in Senior Kindergarten.
The current intervention is that he is removed from the classroom to the school office when the teacher can't cope. The principal and the "School Safety Advisory" person met with us, the principal stated that "it is a school safety concern and the teacher is crying. The teacher does not want him back in class, and we don't always have staff to take him out of the class." Our son has part-time access to a Special Needs Assistant for part of his morning. We are being pressured to constantly pick him up, even though he is very manageable. We have only been called once in 1.5 years and there were no concerns last year . . .
Please advise us what our next steps should be.
Answer:
It sounds like the principal is afraid of a "work-refusal" and is intimidated by the teacher!
The attendance of the "School Safety Advisory" would suggest that the teacher is afraid of your son, and we must address this UNREASONABLE fear!
Your son's past history would suggest that last year's teacher had success in managing his behaviour. The fact that there are no incident reports or injuries, suggests that your son is not posing a physical threat to anyone (believe me if they had this "evidence", they would have used it!).
So the question is :
Why is the teacher crying? Why is she so afraid?
Is she afraid that she might do the wrong thing? (lack of training)
Is she not trained in behaviour management?
Does she have misconceptions about autistic children?
In many cases, the lack of training results in unreasonable fears and a wish to move the child "anywhere" else! I find that offering training, awareness and support can be the solution to this kind of situation.
Is there a Behaviour Plan in place?
Have the board Behaviour Team and/or Autism Team been involved?
Some teachers really need to have specific direction from a perceived professional. Getting written direction and support from Board level staff often makes a huge difference for a teacher. Such direction gives them "permission" to deal with behaviours with confidence. Involving board level staff who are readily available for further consultation (and monitoring) is often a positive step in helping the teacher "to grow into the job." Although the consultant's advice may not be significantly different from a parent's suggestion, it is more readily accepted because of the "board endorsement." If these resources are not involved, give the principal a written request to invite them in immediately.
I continue to be saddened by those educators whose first thought is "remove the child". It is easier for the teacher if the child is removed to the office. HER PROBLEM SOLVED.
A good educator will look at solving the child's problem.
A tiny, tiny minority of teachers "just can't be bothered" with exceptional pupils. They see them as "someone-else's problem" . . . The vast majority of educators really want to do the right thing, they may lack the knowledge or training to do so. I choose to believe that this teacher is intimidated by your son's needs (manageable as they may be to you), I am willing to assume the best — and ask:
What does she need in order to successfully manage your son in her classroom?
• awareness of autism
• a written behaviour plan that directs her behaviour management
• support from board level resources
• ongoing support in the school
• training and coaching
• ***perhaps even counselling (her response seems way over the top?) (This is NOT our business — so don't allude to it in writing or at meetings)
Also, the principal has, in my opinion:
• grossly over-reacted to a minor incident by bringing in the School Safety Advisor
• failed to recognize the underlying issues (teachers should NOT be crying over this)
• not tried to find a Shared Solution (see Ministry Resource Guide for dispute resolution)
• failed to bring in the appropriate board resources
• inappropriately and arbitrarily decided on a course of action which is clearly counterproductive, without even consulting the parents.
In fact, I would say that the principal has escalated a simple issue into one that has tarnished a previously good home-school relationship and created confrontation, rather than resolution. You may choose to pursue this directly with the principal once you get the other things in place.
Think positive thoughts about the teacher, assume the best! Lobby for immediate support and joint planning. Until she is appropriately trained and supported, be supportive! (of course, once this is provided, you can demand follow-up!)
Many parents solve the school's problem by picking their child up, on demand. Congratulations for NOT doing this. Your continued refusal to make it easy to send children home, rather than deal with the real issues, means that we have begun a process where the school will begin to deal with your son appropriately, because they have to! Giving schools an easy out, only postpones this critical learning!
Lindsay Moir retired from the Ministry of Education in 1997 and has been assisting agencies, associations and parents in obtaining appropriate special education services for exceptional pupils.
Family Net welcomes your questions about special education in Ontario .
E-mail Lindsay at ask.questions@yahoo.ca He will answer as many questions as possible.
From a listmate for our American Neighbours.
From: http://firstread.msnbc.msn.com/archive/2007/11/25/479647.aspx
Clinton's
autism plan Posted: Sunday, November 25, 2007 9:25 AM by
Domenico Montanaro
Filed Under: 2008, Clinton
From NBC/NJ's Athena Jones
CLINTON WEEKEND CAMPAIGN NOTEBOOK
SIOUX CITY, IA -- Hillary Clinton used the first stop on a two-day,
post-Thanksgiving swing through Iowa on Saturday to lay out a $700
million a year plan to help people affected by autism. The money would
be spent for research
and provide support for families and teachers
dealing with the disorder, as well as for autistic children and adults.
The senator said autism diagnoses had risen dramatically in the last 15
years to some 25,000 each year, affecting 1.5 million Americans and
their families and costing the country at least $35 billion a annually.
She talked about spending time with a child with autism while living in
Little Rock and her work on behalf of children with disabilities over
the years.
Clinton said not enough was known about what
she called one of the most
urgent and least understood challenges facing the nation and not enough
services were available to deal with it.
"I think it's time we had a government and a president who recognized
the seriousness of autism and addressed it head on," Clinton told the
crowd at a local Boy's Club. She said she was at the club because of
the
work the organization does to provide services for children with
autism.
Clinton's plan would double investments in the National Institutes
of
Health's efforts to identify the causes of the disorder, including
possible environmental causes. Fully funding the "Combating Autism
Act,"
a Clinton co-sponsored bill that became law in 2006, would cost $200
million a year and would be covered by the senator's initiative to
increase the NIH budget by doubling it over 10 years. The other $500
million would come from savings from improving government efficiency,
said spokesman Jay Carson.
"The federal government wastes billions of dollars each year in making
improper payments based on procurement and contractual
arrangements
between agencies and service providers," Carson said. "Implementing the
GAO's recommendations for streamlining the payment process could reduce
improper payments by at least $3 billion per year. Hillary will
allocate
a portion of this savings to fund her autism services program."
One audience member, her head shaved and painted red, white and blue
with "Hillary" written along the side, thanked the senator for talking
about the disorder. The woman said she had lost her hair due to cancer
and that she was an adoptive parent of two autistic
children.
During the question-and-answer session, a man asked Clinton whether her
administration would be willing to tackle the issue of providing
universal health care for all Americans, regardless of their
immigration
status.
"We have to have a safety net, but I have not included people who are
undocumented in my health care plan," Clinton said. "I don't think we
can do that until we deal with comprehensive immigration reform. Just
on
a matter of humanity and morality, we want
to be able to take care of
people on an emergency basis, so there are certain services that we
should provide through a safety net system."
The senator was late to the event due to travel delays, according to
campaign co-chair and former Iowa Gov. Tom Vilsack. He spoke to the
crowd for about 10 minutes about the responsibility Iowans have in
choosing the nominee. He also said Iowa voters had an opportunity to
make history on Jan. 3 and stressed that Clinton had been battle-tested
when it came to withstanding Republican
attacks.
The former governor asked the men in the audience to think about a
young
girl or woman in their lives as the senator spoke.
"Think about being able to go to her on the day after the election and
being able to say to her that for the first time in American history,
every opportunity, every opportunity, not just the union president or
the college president or the doctor or the lawyer or the teacher or the
nurse -- every opportunity is now available to both men and women in
this country. It is what America is about," Vilsack said, calling
this
election an "enormous chance."
From a listmate
*MEDIA ADVISORY* Danielle Forbes
>
> National Service Dogs
>
> (519) 623-4188 ex 13
>
> dani@nsd.on.ca
>
> www.nsd.on.ca
>
> *HAYDEN RECEIVES KINGSTON’S 1st AUTISM SERVICE DOG *
>
>
*_WHAT_________________________________________________________________*
>
> National Service Dogs would like to introduce autism service dog team
> Hayden &
Printer.
>
>
*_WHEN_*__________________________________________________________________
>
> November 26, 2007
>
> For more information please contact NSD or Hayden’s parents Heidi and
> Dave @ 613 634-6030 on or after Nov 26
>
>
*_WHY_*_________________________________________________________________
>
> This weekend Hayden, 12, will be receiving Kingston ’s first autism
> service dog.
Hayden’s parents are currently attending a week of
> training at National Service Dogs’ training centre in Cambridge . Next
> week Printer will be settling into his new home and shortly after an
> NSD trainer will be visiting the family for an additional week of
> training in Kingston . Not only will Printer become Hayden’s new best
> friend, but he will provide enhanced safety, confidence and emotional
> support. Please see attached NSD program outline for more
information.
>
> Over the
coming weeks and months Kingston area residents will see
> Hayden and Printer out in local malls, shops and restaurants. They
> will be easily identified by Printer’s purple service dog jacket.
Like
> other guide dogs, autism service dogs should not be touched or
> interfered with when they are working in public. For more information
> on how these dogs work please visit www.nsd.on.ca
>
> National Service Dogs are valued at over $18,000 each and are
provided
> at no charge to approved families. Hayden and Printer were sponsored
> by the Printing House and we wish to thank them for their generosity.
>
> ******PHOTO OPPORTUNITIES AVAILABLE ******
>
> Danielle Forbes
>
> Director of Business Development
>
> Co-Founder, National Service Dogs
>
> www.nsd.on.ca
>
> 519-623-4188 ex 13
From a listmate
CBS Early Show: Autism in Adults
Aired November 11, 2007
Most programs for people with autism are geared toward children. But
as these children age, the issue of how to help adults living with autism
becomes much more unclear. Maggie Rodriguez reports.
http://www.cbsnews.com/sections/i_video/main500251.shtml?id=3530155n
http://www.prweb.com/releases/autismdietinformation/juliematthewsnutrition/prweb571554.htm
Google alert
Science helps validate special diets for Autism, hope may be right in parents' hands.
New scientific data and opinion supports nutrition and dietary intervention as helpful for those with autism. Newly updated book by Autism diet expert, Nourishing Hope, explains the scientific rationale for applying special diets.
San Francisco, CA (PRWEB) November 27, 2007 -- For every one in 150 children diagnosed with autism, traditional thinking recommends only behavior and communication therapies and medicines to control symptoms. Julie Matthews, Certified Nutrition Consultant and author of Nourishing Hope, knows that something is missing. Treatment options have been limited due to a narrow perspective of autism as strictly a brain, or 'psychiatric' disorder. "Fortunately, science is now rethinking autism and new data supports the idea that special diets can help," Julie says.
Scientists from the University of Western Ontario recently linked a compound produced in the digestive system (also found in wheat and dairy products) to autistic type behavior, which may demonstrate that what autistic children eat could alter their brain function. Commenting on the study, Dr. Martha Herbert, Assistant Professor in Neurology at Harvard Medical School , recently told CBC news in Canada , "Now we're learning that the brain and body can influence each other. There are chemicals produced by and influenced by foods that can affect the brain." If you remove those foods, that negative impact can stop.
The new edition of Matthews' book, Nourishing Hope, highlights recent research in biochemistry and nutrition for autism, and explains the scientific rationale for dietary intervention to help restore health. Doctors and researchers are now recognizing what nutrition experts like Julie have known for years, that the brain is "downstream" from the body's biochemistry, and not the sole origin of the problems seen with autism.
Indeed, the editor-in-chief of the peer-reviewed journal, Alternative Therapies in Health and Medicine, Mark A. Hyman, M.D., posits a new "systemic way of thinking" about autism in his current editorial, Is The Cure For Brain Disorders Outside The Brain? He states that nutritional deficiencies or imbalances can explain some symptoms of autism and that "the body's influence on the brain must come to the forefront of research and treatment."
To help with autism, Julie recommends avoiding gluten and casein (wheat and dairy) because these foods are known to affect a brain response similar to morphine leading to foggy thinking and food cravings in children. Next, she suggests introducing foods that are easy to digest, rich in good bacteria, and packed with nutrients such as homemade broths, naturally fermented foods, and pureed vegetables hidden in meatballs, as well as supplements such as cod liver oil, probiotics (good bacteria), B6, magnesium, and zinc.
Children with autism tend to have very limited diets, so the idea of removing wheat and dairy can initially seem challenging to some parents: however, Julie provides encouragement by explaining, "Once you remove the problematic foods that can be addictive, children often expand their diet tremendously." Thousands of parents who've applied nutrition intervention attest that what they feed their kids clearly makes a difference.
Since parents determine children's diets, this major key to autism is literally in their hands.
Julie Matthews is a Certified Nutrition Consultant specializing in autism spectrum disorders. She speaks at national autism conferences, and leads cooking demonstrations on traditional healing foods. Julie has a private nutrition practice and weekly radio show in San Francisco and assists families from around the world.
For more information visit NourishingHope.com
415-235-2960
From a Listmate
News Release
LEGISLATIVE ASSEMBLY
FRANK KLEES, M.P.P.
Newmarket-Aurora
Queen's Park Office:
Room 447 Ontario Legislature
Queen's Park
Toronto , ON M7A 1A8
Tel: 416-325-7316
E-mail: fklees@frank- klees.on. ca
Mailing Address
650 Hwy 7 East Suite 210
Richmond Hill , ON L4B 1B2
Tel: 905-707-3160
E-mail: fklees@frank- klees.on. ca
For Immediate Release
November 27, 2007
PC Education Critic Welcomes Appointment of Dr Pascal
(Queen's Park) PC Education Critic Frank Klees welcomed the
appointment of Dr. Charles Pascal as Special Advisor to advise the
McGuinty government on the implementation of the Liberals' (2003)
campaign promise to put four and five year-olds into full-day learning.
"With the appointment of Dr. Pascal, we can count on the government
getting objective advice on this issue. Knowing Dr. Pascal, he would
want to conduct his work in a non-partisan way and we can only hope
that he will be allowed to do so," said Klees. "As a respected expert
in early learning, Dr. Pascal is an excellent choice to provide
practical advice on the implications of full-day learning in our
public education system."
Klees called on the Premier to ensure that the terms of reference for
Dr. Pascal's report should include specific focus on Special Needs and
children with autism where research shows that the greatest long-term
benefits can be realized through early intervention.
"We would hope that children with Special Needs will not be left out
of this full-day learning strategy," said Klees. "When the Premier
says that 'early learning helps children get off to the best possible
start in school," this is especially true of children with special
needs and autism, and we will look for Dr. Pascal's terms of reference
to include that focus," said Klees.
Klees expressed concern that the government will add yet one more
layer of programming and costs on an existing school system that is
already under-funded and feeling the pressure of "program creep"
without the requisite funding.
"New program announcements always make for interesting photo-ops, but
the devil is in the implementation, " said Klees. "Given school board
deficits across the province, cramped and aging school infrastructure
and the proliferation of portables resulting from hard caps on class
sizes, it will be interesting to see how this latest Dalton McGuinity
promise plays out. My advice would have been to concentrate on fixing
the problems at hand before dealing with new ones."
-30-
References:
Frank Klees, MPP
PC Education Critic
416 509 8999
From a Listmate
How Cell Phones May Cause Autism
Rates of autism, a disabling neurodevelopmental disorder, have increased nearly 60-fold since the late 1970s, with the most significant increases occurring in the past decade.
The cause of autism is unknown, although theories include such potential causes as:
* Genetic predisposition
* Inability to clear heavy metals
* Increased vulnerability to oxidative stress
* Environmental exposures including mercury preservatives in vaccines
* Trans-generational accumulation of toxic heavy metals
Now a groundbreaking new theory has been suggested by a study published in the Journal of the Australasian College of Nutritional & Environmental Medicine: electromagnetic radiation (EMR) from cell phones, cell towers, Wi-Fi devices and other similar wireless technologies as an accelerating factor in autism.
EMR May be the Missing Link
The study, which involved over five years of research on children with autism and other membrane sensitivity disorders, found that EMR negatively affects cell membranes, and allows heavy metal toxins, which are associated with autism, to build up in your body.
Meanwhile, the researchers pointed out that autism rates have increased concurrently along with the proliferation of cell phones and wireless use.
EMR, the researchers say, could impact autism by facilitating early onset of symptoms or by trapping heavy metals inside of nerve cells, which could accelerate the onset of symptoms of heavy metal toxicity and hinder therapeutic clearance of the toxins .
Speaking in reference to the huge rise in autism rates, Dr. George Carlo, the study’s co-author, said, “A rise of this magnitude must have a major environmental cause. Our data offer a reasonable mechanistic explanation for a connection between autism and wireless technology.”
They also suggest that EMR from wireless devices works in conjunction with environmental and genetic factors to cause autism.
Primary researcher for this article is Tamara Mariea. Her clinic is called Internal Balance™ Inc.(www.internalbalance.com) and is a state-of-the-art Detoxification Clinic located in the Nashville, TN area. Her objective is to provide high quality and current up-to-date information on the hottest topics in the natural health industry including sound advice on how to implement a personal wellness and detoxification program that works.
One of the most successful programs offered at Internal Balance is the unique strategies implemented for autistic children. In working backward through the autistic child’s life, making changes to their environment, diet and implementing State-of-the-Art detoxification strategies, the Internal Balance team has witnessed numerous changes and improvements in the lives and families of these children. In a few cases, they have witnessed miracles that have changed lives forever, including Mariea’s team.
Parents consistently report back that during and after the detoxification process and most importantly after making modifications to their home, they see huge changes in their children’s developmental progress and a decrease in the children’s general sensory discomfort.
Although Mariea believes that autism is a complicated condition that must have several factors at play for a child to fall to this diagnosis, she does believe that the three largest factors at play are
* Genetically determined detoxification capacity
* Early insult to immune system via contaminated vaccines and
* Being born with high levels of toxic burden and into a technologically advanced society riddled with ever increasing levels of radiation
Wireless Radiation in the Etiology and Treatment of Autism (PDF Download Page)
From a Listmate
To: autismontariopeel@rogers.com
Hello everyone.
Many of you will know the name Natalie Whatley and/or will also know the years of dedication she has put into Autism Ontario and SEAC in the Peel. Natalie has been very focused on Adult issues for several years now and is looking for our support to share this email with all of you.
We have been asked to forward on this short survey by Opportunities Mississauga for 21 Plus. Please take a moment this survey will not be a waste of your time.
Joyce Lang
Autism Ontario Peel
Do you live in Mississauga ? Are you a mother, father, brother, sister, guardian or case worker caring for a developmentally disabled family member 13 years of age or up?
If this is you, Opportunities Mississauga for 21 Plus invites you to take our 2007 Survey of Community Needs of Mississauga Youth and Adults with a Developmental Disability.
Here is a bit of background on our group. We are all volunteers. We are all caring for our adult developmentally disabled family members.
When we came together seven years ago, we saw our loved ones reaching the age of 21, finishing school and facing a complete lack of opportunities to participate in meaningful day time, recreational, social and leisure activities out in the community. We conducted a survey of Mississauga families to learn about their needs, and worked with Community Living Mississauga to develop a successful joint application to the government. The Ministry of Community and Social Services now funds a day activity program that serves 146 adults with intellectual disabilities, five days a week.
Our current survey questions concern your needs for services like day programming, respite, and transportation. We particularly wish to understand your expectations of long-term residential care opportunities, since our members have conveyed this issue is key and requires direct
attention..
By responding to this survey, you will help us understand our community better, and help us take the first steps towards building a better one for our loved ones and for ourselves. Be assured that all information provided by you will remain confidential.
The survey takes about 15 minutes to complete. You may take it online by logging on to
http://www.om21.ca/
or if you have questions or want a survey mailed to your home - contact Anna Przychodzki by email: anna_przycho@yahoo.ca or by phone: 905-796-0266.
Please send us your survey by December 20, 2007
From a listmate
TVO Parents Autism Videos
http://www.tvo.org/cfmx/tvoorg/tvoparents/index.cfm?page_id=145&action=article&article_title_url=TheEarlyDaysofAutismMeetParentsLikeYou&article_id=3341
From a Listmate
EARLY EDUCATION
TheStar.com | News | `Equalizer' for poor families
`Equalizer' for poor families
McGuinty appoints adviser to spearhead plans to phase in full-day kindergarten, starting in 2010
Nov 28, 2007 04:30 AM
Rob Ferguson
Queen's Park Bureau
Premier Dalton McGuinty made a start yesterday on delivering all-day kindergarten provincewide starting in three years, but he acknowledged the money set aside so far for the program isn't enough.
McGuinty – who first promised full-day kindergarten in his 2003 campaign but didn't deliver in his first term – yesterday appointed education expert Charles Pascal to develop options the government can follow as it phases in the program across the province over several years.
Right now, about 240,000 children aged 4 and 5 in Ontario go to half-day junior or senior kindergarten and spend the other half of the day at home or in child care. The daylong program would incorporate more learning, which studies suggest will boost children's math and language skills in later years, McGuinty said.
"We want them to be the best they can be," added McGuinty, who acknowledged the $200 million allotted for 2010 and $300 million for 2011 won't be enough to open the daylong program to all.
Aside from the learning advantages, the program will help level the playing field for poor families that can't afford child care, said Pascal, who is executive director of the Atkinson Charitable Foundation, dedicated to economic and social justice, named after former Toronto Star publisher Joseph Atkinson.
"For the single mother of three kids who's earning $21,000 a year, this is huge, this is an equalizer," Pascal, who has held a number of education postings, said in an interview after he appeared with McGuinty at Bruce Junior Public School in the east end.
NDP education critic Rosario Marchese said McGuinty's photo opportunity was a reannouncement and the unclear cost and timing of the program's phase-in for all children makes it likely the Liberals will be promising it again in the 2011 campaign.
"Why don't we fix the problem right now?" asked Marchese, MPP for Trinity-Spadina and a former teacher, who said the government should change the law to make kindergarten attendance mandatory.
Pascal said the idea behind the program is to provide "seamless" full-day learning and education-based play for children. Some full-day programs have kindergarten teachers working alongside daycare staff who are accredited early childhood educators. Those early childhood educators hope the program will also be an equalizer for them since they earn about half as much as kindergarten teachers.
"That's what's on everybody's mind," said Eduarda Sousa, executive director of the Association of Early Childhood Educators of Ontario. "The role they play in the classroom is equal."
Pascal's appointment and the full-day plan were widely hailed in education circles and by Progressive Conservative education critic Frank Klees, who urged him to consider the needs of children with special needs and autism.
"This is absolutely needed," Elizabeth Ablett, executive director of the Ontario Coalition for Better Child Care, said of the full-day plan.
Pascal is a "perfect fit" for the job because he's been deeply involved in both education and child care issues," David Clegg, head of the 7,000-member Elementary Teachers' Federation of Ontario, told the Star's Laurie Monsebraaten.
Pascal said he will not be paid by the province for his work, but the Atkinson Foundation will be reimbursed for his lost time.
From a Listmate
Autism and Behaviour Analysis
ONTABA Conference 2007
By: Taline Sagharian
November 28, 2007
The Ontario Association for Behaviour Analysis (ONTABA) www.ontaba.org held their annual conference on November 15 and 16, 2007. The two-day conference provided an exciting opportunity for attendees to learn some of the most up-to-date and innovative methods of incorporating Applied Behaviour Analysis (ABA) techniques in various significant issues including autism.
During the Awards Ceremony segment, retired MPP Shelley Martel was presented with an honourary lifetime ONTABA membership award in recognition of her outstanding dedication and commitment to families and individuals with autism and in supporting ABA in Ontario . Ms. Martel said that she is thrilled to continue her involvement with the autism community and feels that there is great merit in developing an accreditation process for professionals working in the field of autism and ABA . “This is necessary to assure parents that high quality treatment services are being delivered to their children and that the money being invested in recruitment, training and retention, is being well-spent,” said Ms. Martel. “Models of regulation have been developed in other jurisdictions and we should examine those models to determine what would work in Ontario .” When asked why it would be paramount for the government to recognize and work with ONTABA in this development process, she said; “Since ONTABA has the expertise in behaviour analysis, it only makes sense for the Ontario government to work with ONTABA in developing any such criteria."
In his opening remarks, Dr. James Porter, now past president of ONTABA, announced the birth of the Canadian Association for Behaviour Analysis Inc. (CABA), for which he is the founder and will serve as its first president. The website will be uploaded in the next 48 hours http://www.cdnaba.org:80/ . “The primary focus will be on creating a national voice for behaviour analysis and behaviour analysts,” he said. “This includes helping to establish ethical, accountable behaviour analysis services with quality assurance in all provinces -- all regions -- from one end of Canada to the other through certification of behaviour analysts throughout Canada .”
Malcolm Stanley, executive member of the Ontario Autism Coalition (OAC) www.ontarioautismcoalition.com made a presentation on day two of the conference for which he received a standing ovation. The presentation pointed out that the ONTABA brand is based in the quality of ABA service and that there are dangers in the organization not being involved in ABA implementation strategies in Ontario . "Appropriation of the ABA concept by politicians and unqualified service providers weakens not only ONTABA but threatens the overall quality ABA service provided to all Ontario children (with autism)", said Mr. Stanley. “The OAC strongly urges ONTABA to aggressively 'police' the use of ABA-based word marks and concepts in the Ontario marketplace”, he said. The OAC is also pushing for ABA to be implemented under the guidance of ONTABA member professionals and offered a number of possible solutions such as the development of a professional college. "A key step in this process is the achievement of an agreement with the Provincial government to put in place a college for ABA professionals and ensure proper credentialing of ABA service providers," he said. "This strategic goal must be achieved by ONTABA before school programs are set up which ignore or disallow the presence of ONTABA and its members."
There was an abundant flow of energy throughout the two days. Indeed, it has been a remarkable year for autism in Ontario . There is no question that the newly formed relationship between autism advocates and ONTABA provides the critical backbone in the fight for the implementation of authentic ABA in our province. The first step in achieving this goal is for Ontario to embrace the existing international standards of board certification for those practicing ABA . However, qualifications specific to both autism and ABA expertise requires that the individuals overseeing the implementation of ABA for autism not only meet the international board certification standards, but that they also carry autism experience as outlined in the Autism SIG Guidelines for ABA Consumers http://www.behavior.org/autism/ABAAutismSIG_Gdlns_2007.pdf .
From a listmate
For Immediate Release
November 27, 2007
PC Education Critic Welcomes Appointment of Dr Pascal
(Queen’s Park) PC Education Critic Frank Klees welcomed the appointment of Dr. Charles Pascal as Special Advisor to advise the McGuinty government on the implementation of the Liberal's (2003) campaign promise to put four and five year-olds into full-day learning.
"With the appointment of Dr. Pascal, we can count on the government getting objective advice on this issue. Knowing Dr. Pascal, he would want to conduct his work in a non-partisan way and we can only hope that he will be allowed to do so," said Klees. "As a respected expert in early learning, Dr. Pascal is an excellent choice to provide practical advice on the implications of full-day learning in our public education system."
Klees called on the Premier to ensure that the terms of reference for Dr. Pascal’s report should include specific focus on Special Needs and children with autism where research shows that the greatest long-term benefits can be realized through early intervention.
"We would hope that children with Special Needs will not be left out of this full-day learning strategy," said Klees. "When the Premier says that 'early learning helps children get off to the best possible start in school,’ this is especially true of children with special needs and autism, and we will look for Dr. Pascal's terms of reference to include that focus," said Klees.
Klees expressed concern that the government will add yet one more layer of programming and costs on an existing school system that is already under-funded and feeling the pressure of “program creep” without the requisite funding.
"New program announcements always make for interesting photo-ops, but the devil is in the implementation," said Klees. "Given school board deficits across the province, cramped and aging school infrastructure and the proliferation of portables resulting from hard caps on class sizes, it will be interesting to see how this latest Dalton McGuinty promise plays out. My advice would have been to concentrate on fixing the problems at hand before dealing with new ones.”
-30-
References:
Frank Klees, MPP
PC Education Critic
416 509 8999
From a Listmate
Note: Stephen Shore is a charter member of the Unlocking Autism Board of Directors as well as serving on many other autism advocacy boards across the nation. Stephen travels around the world sharing his personal experiences and helping parents of those with autism as will as those with autism themselves. Unlocking Autism is very proud of Stephen!
Autistics can thrive by knowing themselves
Self-awareness allows more autonomy
Roger Collier
The Ottawa Citizen
Saturday, November 03, 2007
The tendency for autistic children to obsess over particular objects or activities, which are sometimes referred to as their restrictive interests, is often viewed by parents as a negative behaviour. But perhaps it shouldn't be, says Stephen Shore , an autism expert who spoke yesterday at Autism Through the Lifespan, a two-day conference.
"Instead of calling it a restricted interest, how about calling it a focused interest," said Mr. Shore. "Or a special interest. Or a passion?" Mr. Shore, who recently completed a doctorate in special education at Boston University , was diagnosed with strong autistic tendencies in 1964. A non-verbal four-year-old at the time, doctors recommended he be institutionalized, a recommendation his parents ignored.
Later, as his verbal skills developed, his diagnosis shifted to Asperger's syndrome. Aspies, as they sometimes refer to themselves, typically struggle in social situations, dislike change and are obsessed with routines, but do not have the communication deficits characteristic of disabilities on the more severe end of the autism spectrum.
Mr. Shore did, however, have a so-called restricted interest: watches. He would take them apart using kitchen knives and put them back together again, after which, without fail, they continued to work.
His parents didn't discourage his love of tinkering, and his focus later shifted to fixing bicycles.
"It was a great way of making money during college," said Mr. Shore.
It is also unproductive for parents of autistic children to deny the diagnosis, says Mr. Shore.
He has a term for such a parent: APHID (Autistic Parent Heavily In Denial).
If a parent refuses to accept a diagnosis of autism, the child may not be able to gain sufficient self-awareness. Mr. Shore believes that people who better understand their disabilities are more capable of determining which services or accommodations they need. He refers to this as being "literate about one's own needs." Self-awareness also enables autistics to better advocate for themselves, says Mr. Shore. By recognizing their weaknesses, autistics can seek the services or accommodations they need to overcome them. For example, poor penmanship, a common problem for autistics, wouldn't be such a handicap in the classroom if autistics acknowledged the weakness and sought permission to use computers instead.
"I've seen a student go from being one of the lowest performing students to being one of the highest performing because he was finally able to get his thoughts down on paper." Although parents can be strong advocates for their autistic children, Mr. Shore learned early in life that people with disabilities can't always rely on others to meet their needs. In elementary school, he received ridicule, not support, from his peers. He struggled academically. One teacher told him he would never be good at math -- a poor prediction, evidently, as Mr. Shore now teaches college-level statistics.
Mr. Shore is the author of two books -- Understanding Autism for Dummies and Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome -- and has contributed to several others. A popular speaker, Mr. Shore has participated in hundreds of autism conferences on five continents, and has been featured on CNN and in U.S.A. Today and Newsweek.
Judging by the reaction of his audience yesterday, it is little surprise that he is in high demand. He engaged the audience early, leading them in a self-penned song called "Oh where, oh where did autism come from." Throughout his presentation, he drew laughter from the audience with funny anecdotes, posed questions and requested volunteers to help him illustrate certain points.
Toward the end of his presentation, Mr. Shore talked about the various fields of intervention available to autistics: educational and behavioural, biomedical and sensory. He cautioned attendees not to devote themselves fully to any one intervention, as there is no way of knowing which one, or which combination, will prove most helpful to an autistic person.
"Which is the best approach?" he asked the audience, pausing briefly. "The one that works." The conference concludes today at the Carling Avenue Travelodge.
© The Ottawa Citizen 2007
Copyright © 2007 CanWest Interactive, a division of
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Challenges of autism 'massive mountain' to climb
Parents really need all the help they can get
Fri Nov 30, 2007
As parents, we all want the best for our children. My husband and I have three wonderful children. The youngest, our 12 1â?2-year-old son, has severe autism, a neurodevelopmental disorder that affects a person's communication and social skills. They may exude repetitive behaviour and at times, appear to be in a "world of their own."
As any parent knows, raising children is the hardest job you'll ever do. When the child has special needs or limitations due to a disability, that job can be extremely overwhelming.
There are days when you feel every breath you take, right in the centre of your heart. The physical and emotional strength required to be the best you can be for your child can be extremely challenging.
We have a little family support and occasional outside respite care. This helps and is appreciated, but it still leaves our family with a "massive mountain" to climb each day.
Our boy is very loving, exceptionally handsome and an incredibly busy child. He is non-verbal (approximately 40 per cent of all people with autism are) and his cognitive skills are quite low. This, quite understandably, creates a tonne of frustration for him. The "tantrums" he has are exhausting. For him and for us.
He can become self-abusive, destructive and has no understanding of "danger." He is very co-ordinated. Back when he was a baby, he would spin little balls on his fingertips. At that time, we thought he was gonna be the next Michael Jordan!
There are a lot of theories, but no known cause or cure for autism. There are therapies for autism that may enable some of these higher functioning children to live independent lives one day. Unfortunately, autism is not deemed a medical condition by our government, so none of the therapies are covered under the Ontario Health Plan.
You have no doubt read or heard the government's recent statement on providing millions of dollars to autism. Well, where is it Why is the money not filtering down to our existing elementary and secondary school systems
There are educators already in place there to teach our children. Let them teach. Hiring high-priced "consultants" to poke their head in the classroom and offer suggestions isn't good enough. The children need "hands-on work," a lot of them "one on one" in order to succeed and reach their full potential.
The government has provided money at the university level to develop programs to train therapists to work with these kids. However, a lot of the graduates will end up working with private agencies that charge anywhere from $30 to $90 per hour or more. Can you afford that I can't.
While they're young, these kids are still being housed, clothed and fed by their parents. The children will get older and so will their parents. It is indescribably "gut wrenching" to think that one day, we may not be able to care for our son.
The everyday pressures of family, work, money, etc., is definitely a "test" for any relationship. Throw autism "into the mix" and the statistic is rather dismal. The divorce rate among couples with an autistic child is 80 per cent. I have an amazing "team member" in my husband.
We are definitely in this together, both striving to do the best we possibly can do for all of our children.
The recent statistics show, one in every 150 babies born now will have some form of autism. One in every 94 boys. What does the statistic have to be before something is done to really help these children Will it be your baby or your grandchild that is affected I hope not.
Christine J. Taylor is a Durham resident who has written in the past about issues surrounding autism. She is a frequent contributor to this space.
From a listmate
Full-time kindergarten on way
Regional News
Dec 01, 2007 12:04 AM
Education expert to help province implement $500 million program; MPP Klees says don’t forget special needs children
By: Teresa Latchford, Staff Writer
York Region four and five-year-olds can look forward to a full day of learning in the coming years.
The province has just earmarked $200 million in 2009 and $300 million in 2010 to implement full-time learning programs for junior and senior kindergarten students.
The premier has appointed Dr. Charles Pascal, an expert in early childhood education, as an adviser to recommend the best way to implement the initiative.
“Research is telling us we need to invest in the early years,” Education Minister Kathleen Wynne said.
“We know Fraser Mustard’s most recent early years study showed the importance of teaching children in the early, developmental stages.”
The study was authored by child development expert Fraser Mustard, Margaret Norrie McCain and Stuart Shanker of York University .
Released last spring, it called the early childhood programs and assistance in Canada a “chaotic mess” and suggested they be revised to include preschool programs in schools, support for parents, social service referrals and child care.
It also recommended the province make early childhood education as important as elementary and secondary schooling by linking it to the public system.
But Progressive Conservative education critic Frank Klees called on the premier to ensure the recommendation report include a focus on special needs and autism programing, since it is crucial to teach these children at an early age.
“We would hope children with special needs will not be left out,” he said.
“Given school board deficits, cramped and aging infrastructure and the proliferation of portables, it will be interesting to see how this latest promise plays out.”
A study released by Rutgers University showed four-year-olds who were placed in a full-time learning program achieved higher scores in literacy and numeracy than those in part-time programs.
The Elementary Teachers’ Federation of Ontario welcomes the initiative and believes Mr. Pascal will ensure a smooth implementation, federation president David Clegg said.
Mr. Klees also liked the appointment, saying,“With Dr. Pascal, we can count on the government getting objective advice on the issue.”
The York Region District School board has confirmed it will gather information for the province to help show the impact such an initiative would have on schools in the region.
The board hopes to have information in the new year.
“It won’t be fully rolled out by 2011 in every school,” Ms Wynne said. “Mr. McGuinty has already said this money will not be enough for every four and five-year-old to be put in a full day of learning, but it will mean a large majority of them will be.”
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Learning to cope with autism
By Susan Sherring -- Sun Media
The headline screams out - Fighting for My Autistic Son.
And there, on the front of a recent People magazine, is the beautiful and blond Jenny McCarthy, promising to tell readers about her son Evan's surprising breakthrough and how funnyman Jim Carrey helped her heal. Heady, eye-catching stuff.
Doesn't hurt that son Evan is also picture perfect with his blond curls and blue eyes.
Like other parents, McCarthy found herself surfing the Internet in search for help after her son's "devastating diagnosis."
Shortly afterward, she began a wheat and dairy free diet for son Evan, telling People she almost immediately noticed a positive change in his behaviour and his speech.
Problem is, there's no good scientific evidence to prove a relationship between diet and improved behaviour for autistics.
It's all anecdotal, though hundreds of parents swear by its effectiveness. (Research is now ongoing at the University of Western Ontario looking for a link between food and autism.)
But, for now, in the world of autism, it's just one of the many unknowns. Diagnosis isn't easy. There's no simple blood test, but a complex assessment looking at skills in three basic areas: Communications, socialization and behaviour.
In many cases, with treatment, behavioural problems associated with autism can be modified, but the mainstream medical community will tell you it can't be cured.
In Canada , there's still no national strategy, no uniform level of care. And while resource groups exist, families who receive a diagnosis of autism for their precious child often feel abandoned by the system, making their way through a maze of information and paperwork, having to decide for themselves what treatment route to take and how to cope with an often out-of-control child.
In the summer of 2006, when Tara Schuessler first heard her three-and-a-half year old daughter Kaelen was autistic, her world immediately changed.
"We sort of knew she had autism before we had the diagnosis. All the signs were there. So it wasn't a shock, but it was still devastating," Schuessler said.
"I guess before I did the research, the word autism was very startling."
For many people, the only understanding they have of autism comes from the movie Rainman, portrayed by Dustin Hoffman.
"Then (with research), we realized what a vast spectrum autism really was. There's such a range and there's so much complicated terminology. It's so complicated.
"I find myself educating my family and friends," Schuessler said.
She and husband Mark settled on Applied Behaviour Application (ABA) treatment, the most commonly accepted treatment.
" ABA , in my opinion, is the only scientific, evidence-based treatment that works," she said. Rather than let Kaelan get worse while languishing on a waiting list, they paid for private therapy.
"When I reflect back, and l look at other families who have it worse, my husband and I knew the right steps to take. We knew what we had to," she said, adding they can only afford nine hours of therapy a week, the minimum recommended.
"But she's responded, and I know it doesn't work for everybody. We're going to do private therapy for as long as we can."
Kaelen, now four-and-a-half, is in a regular school with a support worker helping out.
"She now speaks in full sentences. She's quite social, doing well. We're really optimistic, though we try not to think too long term, not too far in advance," she said.
Many mysteries remain.
The biggest unknown is the cause and the cure.
The medical community doesn't have an answer for either one.
Another of the great unknowns?
While many in the field believe autism is on the rise, reaching epidemic proportions, that too has a big question mark over it.
Has it really reached a crisis situation?
The medical community isn't in agreement whether there are actually more people with autism or if it's simply being diagnosed more. That the definition of autism is more inclusive and better understood.
Another controversy? Childhood vaccines. While the scientific community has studied a connection between vaccines and autism, and ruled it out as a cause, some parents still can't help but believe there's a connection between the timing of childhood vaccines and the change in their child.
While struggling with the diagnosis, and learning to cope with a child with autism, many parents find themselves also fighting the system, lobbying to bring attention - and increased funding and research - to the issue of ASD.
It appears to be paying off.
After years of languishing on the backburner, autism is finally getting some of the attention it deserves.
Researchers at the Offord Centre for Child Studies heralded a breakthrough with an international consortium in the discovery of one gene and a previously unidentified region of another chromosome as the location of another gene that may contribute to a child's chances of having autism.
The findings were based on genetic samples from nearly 1,200 families with two or more children who have autism, and it's a study Canadians took part in.
The work is considered a major breakthrough to better understanding the disorder and improving diagnosis and treatment.
It's hoped the new information in hand with researchers are one step closer to finding the specific genes that cause autism.
But with words like epidemic and crisis tossed about, the issue is also finally getting the ear of some sympathetic politicians.
Case in point? In the recent provincial election, the New Democratics and the Progressive Conservatives both targeted autism as an important election issue, both featuring election ads addressing the importance of increased funding for autistic children.
This past summer, it was revealed the Ontario government had spent more than $2.4 million in taxpayer dollars on a seven-year court battle just to fight parents of autistic children.
In Ottawa , Tory MPP Lisa McLeod has also played a province-wide role in getting autism front and centre .
After she defeated New Democrat opponent Laurel Gibbons in a byelection last year, she asked Gibbons to join forces with her to push for change.
Gibbons, who has an autistic child, has used elections to push forward the issue of increased funding and research for autism.
"This shouldn't be about party politics," said McLeod. "I was very involved in writing my party's platform and autism and much of it came from Laurel ."
As documented in a recent Senate committee report, things are changing, albeit slowly.
"A generation ago, the vast majority of the people with autism were eventually placed in institutions, while many others were misdiagnosed," the report, released in March, reads.
The people who help families also see more attention given to the issue.
Brenda Reisch is the charity co-ordinator for Children at Risk, a support group for families with autism. They try to fill in where they see a void, like its sibling support group, which helps brothers and sisters of autistic kids.
"It's all parent-power," said Reisch. "We screamed and we yelled and we launched court cases. If we sit back, nothing happens. But it's extremely exhausting, and a lot of people get burned out, a lot of marriages fail," she said.
Her son Ian, about to turn 15, was diagnosed with autism when he was 18 months.
"My child is 24/7, he can't be left alone," adding he's closer in development to a five or six-year-old. "He has no sense of danger. I describe him as a locomotive without the engineer. He has the physical ability to do anything, but not the cognitive sense, and now that he doubles and triples in age, it's extremely wearing," she said.
But while she sees change, she doesn't think most people really have any understanding about what autism really means.
"Unless your living with it, or know someone who's living with it, it's hard to understand. It's a cognitive disability and it's scary if you don't understand it. You can't see it like you can a physical disability."
"Our kids don't look disabled, but their behaviour is so off the wall."
susan.sherring@sunmedia.ca
**************
From a listmate
Autism
A former mail carrier with no academic credentials is shaking up the
way the people view autism. But her blunt views have put her at odds
with many, Roger Collier reports
Roger Collier
The Ottawa Citizen
Saturday, December 01, 2007
As a warm October rain lacquers the street outside, Michelle Dawson
walks to a table in a quiet Montreal café and removes her coat,
exposing arms criss-crossed with scars from self-inflicted wounds.
There are scars on her left cheek, too, and just above the collar of
her V-neck T-shirt.
It's a Tuesday, mid- morning, and the café is empty except for one
other customer. A television flickers silently in a corner. Soft rock
seeps from tucked-away speakers.
A waitress arrives and Dawson orders coffee. She doesn't often drink
coffee but this morning she could use the caffeine. Yesterday, she
rose at 3 a.m. to finish a written argument for a court case, the
latest in a series of legal battles between Dawson and her employer,
Canada Post.
Dawson, who is 46, delivered mail for 11 years. She enjoyed the job
and was good at it. She rarely missed a day, even in weather so awful
most of her co-workers stayed home.
In 1999, Dawson told Canada Post she was autistic. Big mistake. Until
her case is decided, she can't say much about what happened. But
within a year she found herself on unpaid leave, which she is still on
today.
"I can't believe how naive I was," says Dawson , "how unprepared I was
for how autism is viewed."
Reducing the stigma surrounding autism is a goal of many autistic
rights groups. Great Britain 's National Autistic Society runs a
campaign called "think differently about autism." In Canada , there's
The Autism Acceptance Project, a year-old organization based in
Toronto with a mission to "promote acceptance of and accommodation for
autistic people in society." The loose network of people known as the
neurodiversity movement, which promotes dignity for people however
their brains are wired, has members all over the world.
Some in the autism community, however, are critical of the acceptance
movement. There are groups that focus on curing autistics instead of
accommodating them; there are groups that promote biomedical
interventions to eradicate autistic behaviours; and there are groups
that believe the only hope for autistic children is an educational
therapy designed to make them more like non-autistic children.
Although the various factions quarrel endlessly on the Internet,
autistic rights advocates insist black-and-white views of autism --
pro-cure versus anti-cure, pro-this-therapy versus pro-that-therapy --
aren't helping anybody. Autism is too complex, they claim, to reduce
to us versus them.
Dawson, now a prolific writer on science and ethics, says the larger
problem is that autistics aren't treated with the same respect as
other people. She believes many scientists underestimate autistics,
dismissing their skills or talents as products of fortunate wiring in
an otherwise dysfunctional brain. She believes some advocacy groups,
in their attempts to pressure governments to pay for therapies, have
painted far too bleak a picture of autism.
Dawson doesn't deny that life can be difficult for autistics. She
describes her own deficits as "spectacular. " Her scars attest to that.
But no matter where people lie on the autism spectrum -- even if they
self injure, or struggle with speech, or can't tie their shoes --
Dawson says they all deserve the same standards of ethics in science
and advocacy as anybody else.
Laurent Mottron, a Montreal autism researcher, compares Dawson 's
writings on autistic rights to the works that ethnic minorities or
women produced a century ago. "It is not only (she) who is ahead but,
above all, us who are behind," writes Mottron in an endorsement on
Dawson 's website. "I am grateful to her for having opened my eyes to
the human and historical dimensions of autism, when I saw it only as a
handicap with a scientific enigma added."
But Dawson has her detractors, too. And they aren't afraid to express
what they think of her work. Or what they think of her.
The Science Bias
Dawson keeps her café visit brief. As usual, she's too busy to linger.
She's speaking at an autism conference tomorrow, and her PowerPoint
presentation is still a few slides short. After putting on her coat,
she grabs her umbrella and heads back into the rain.
The next morning, her presentation ready, Dawson catches a ride with a
colleague and joins 150 others in a dark-walled room in a downtown
conference centre. At 9:15 a.m., after a brief introduction by Laurent
Mottron, Dawson rises from her chair and walks to the podium.
Her long, dark hair is pulled into a ponytail. No fan of formal wear,
she's dressed in jeans and a navy-blue sweater with the sleeves pushed
up. But it isn't Dawson 's attire that sets her apart today.
The speaker following Dawson is a professor at Yale University . The
speaker after him is a professor at the University of Montreal , and
the one after her teaches neurobiology at the University of
Louisville . Dawson, who will be presenting her research on new
perspectives on autistic intelligence, is the only person on the
program without a PhD. In fact, she never attended university at all.
In 2001, Dawson and Mottron both appeared in an autism documentary --
he as the brilliant scientist, she as the unhappy autistic. Dawson
remembers this time as a particularly bleak period in her life. Since
being diagnosed in the mid-'90s, and especially after her Canada Post
experience, she had come to believe it was wrong to be autistic. She
recalls saying in the film: "I wish I were anybody but me."
Soon after, Dawson met Mattron, who confirmed her diagnosis. Mottron
learned that Dawson struggled to perform many day-to-day activities,
like banking and shopping, and offered his assistance. What followed
was a two-year period Mottron describes as a "sad and funny time."
Each time he proposed something to help Dawson , she argued against it.
She told him his ideas weren't precise enough. Sometimes she told him
he was flat-out wrong. Mottron says he felt useless, so he tried a new
tactic.
"I thought another way to help this person would be to use her
intelligence to do something useful," says Mottron.
He gave Dawson one of his scientific papers in 2003 and asked her to
edit it for grammar. A second paper followed, but this time Dawson did
more than look for misplaced apostrophes. By now, Dawson had begun
studying the science of autism in earnest. She found logical
inconsistencies between the two papers and provided Mottron with a
precise, and unexpected, criticism.
"After four or five papers, she began giving comments that were above
what any of my PhD students could do," says Mottron.
In 2004, Mottron asked Dawson to contribute to a book he was writing
and, later, invited her to join his research team. She accepted both
offers. She has since written or co-written numerous papers published
in scientific journals such as Brain and the Journal of Autism and
Developmental Disorders.
As a well-respected -- and well-funded -- researcher, Mottron realized
accepting contributions from a former mail carrier with no academic
credentials posed a risk to his career. But he was convinced that
Dawson was more than just intelligent -- she was important. And he
believes he's been proven right.
"She is known around the entire world," says Mottron. "It is
absolutely amazing."
Upon reviewing research on autistic intelligence, Dawson realized
scientists, like much of society, underestimate autistics. Some
scientific literature has reported that 75 per cent of autistics are
of low intelligence. Dawson claims that percentage is inflated because
researchers are often biased towards one type of intelligence -- the
type exhibited by a typical mind.
So instead of trying to determine how autistic brains work, most
scientists try to determine how autistic brains are broken. Dawson
says a more useful approach is to consider autistic brains as
profoundly different from, but not inferior to, non-autistic brains.
In a paper published in the journal Psychological Science, Dawson
notes that the tests often used to measure autistics' intelligence,
Wechsler intelligence scales, rely heavily on spoken questions that
require spoken answers. When researchers instead used Raven's
Progressive Matrices, a test better suited to how autistic brains
process information, the results were much better. In other words,
autistics may be a lot smarter than people think they are.
"She is someone who will change the way an entire sector of humanity
is considered," says Mottron of Dawson.
While Dawson 's ideas may have rattled bifocals in the academic
community, she wasn't always well known in autism advocacy circles.
That changed after she began writing about ethics. Before her father
gave her a laptop in 2004, Dawson used library computers to write long
-- and heavily footnoted -- essays questioning the advocacy practices
of Canadian autism groups.
In 2003, she wrote an essay -- "No Autistics Allowed" (which is also
the name of her website) -- in which she accused autism advocates of
excluding autistics from participating in any public discourse about
autism. She e-mailed the essay to a web-savvy friend, who posted it on
various Internet message boards.
In her next essay -- "The Misbehaviour of Behaviourists" -- Dawson
criticized the ethics of proponents of a popular type of autism
therapy based on a behavioural science called applied behaviour
analysis, or ABA . This one bounced around the Internet like an
ambitious piece of spam. And many people who read it took an immediate
disliking to its author.
"That article made me notorious," says Dawson .
Advocacy Over Accuracy
After entering the two-room apartment she's called home for 20 years,
Dawson jumps and taps the fluorescent tube attached to her kitchen's
ceiling. Nothing happens. She tries again and the light flickers to life.
The kitchen contains the usual kitchen things: a refrigerator, a
counter, a sink. But this tiny room is also Dawson 's office. The floor
is covered with stacks and stacks of books. And on the counter, next
to the sink, sits an old Dell laptop -- Dawson 's conduit to the world.
Dawson does most of her work here, standing at her kitchen counter,
sometimes for 14-hour stretches. She also scours the Internet, via a
syrup-slow dial-up connection, for information about autism.
Occasionally, she writes something for her website. None of her
writings, however, have been as widely read -- or reviled -- as the
essay she released online on Jan. 18, 2004.
In "The Misbehaviour of Behaviourists, " Dawson questions the ethics of
autism advocates who tout ABA therapies as the only means by which
autistics can reach their full potential. She claims they are
overselling the therapies, falsely describing them as "scientifically
proven" or "medically necessary."
"The popularity has gotten way ahead of the evidence," says Dawson .
Some autism researchers are less critical of the evidence supporting
ABA . Pat Mirenda, a University of British Columbia education professor
and certified behaviour analyst, says ABA therapies have more
scientific backing than any other autism service. She claims the
therapies can teach autistics the basic life skills they need to exist
in a non-autistic world -- how to dress themselves, for example, or
how to speak.
" ABA is just good, clean teaching," says Mirenda. "And good, clean
teaching is going to yield learning in anybody."
Mirenda acknowledges, however, that the results of ABA therapies vary
widely from child to child, and that it's impossible to predict who
will do well. She also concedes that the science supporting ABA is far
from complete.
"There's never been a large, really well-done (study), the way they do
the drug trials and medical trials."
In addition to exaggerating the effectiveness of a favoured therapy,
Dawson believes some ABA advocates, in their efforts to get government
funding, are committing another ethical sin: They are creating a
culture of fear.
There's the director of a B.C. parent's lobby group who told the Globe
and Mail: "Without treatment, kids like this are usually
institutionalized by the time they're adolescents. They're living in
restraints, living in diapers. They have to have their teeth removed
because they bite." There's the member of another autism advocacy
group who told the Senate: "Autism is worse than cancer in many ways,
because the person with autism has a normal lifespan."
Statements like these, Dawson says, are baseless and hurtful to
autistics, yet are all too often spouted by Canadian autism advocates.
And regardless of their motivation, she says, it is inexcusable.
"You don't go out there and dehumanize and denigrate people on the
grounds of getting them services."
It is not entirely surprising, however, that drama has been
substituted for sensitivity in the fight for government money.
Activism and subtlety aren't well acquainted, says Margaret
Somerville, founding director of the McGill Centre for Medicine,
Ethics and Law.
"The problem with activism is that you have a direct, simple, clear
goal ...You sacrifice the complexity and the nuance to make the point
you want to make," says Somerville . "It doesn't mean these parents
don't love their kids, and that's the important point to make ... We
sometimes don't appreciate the tremendous sacrifice that some of these
parents put in for their kids."
Many autistic rights supporters don't believe love or desperation
justifies the rhetoric. They fear that by overvaluing a particular
therapy, advocates are placing all parents of autistic children on a
very slick slope: Society may soon consider it unethical for them not
to put their kids in ABA programs.
"What's going to happen if the government legislates that all schools
do ABA ?" says Estee Klar-Wolfond, a Toronto writer and founder of The
Autism Acceptance Project. "Will my son be forced into an ABA program
in which he won't benefit?"
When Klar-Wolfond first looked into assistance programs for her
five-year-old autistic son, Adam, she was told there was only one
type: ABA . She enrolled Adam in a program, but he regressed so she
took him out. She will soon be taking him to the U.S. to learn how to
use a text-to-speech computing device. Such devices are difficult to
obtain in Canada , Klar-Wolfond says, because of all the focus on ABA .
"It's important that autistic people get support and services. In this
respect, the ABA community is not wrong. But ABA is not the only piece
of the picture. And it's certainly not the right way to advocate with
this devastation language. That's offensive to the autistic community."
Klar-Wolfond says her son has many of the limitations typical of
autistic children. He's almost six and can barely speak. He has
trouble socializing with other kids.
"But it's not all doom and gloom. He brings our family so much joy. We
address the challenges and keep living."
Like Klar-Wolfond, Dawson is sometimes accused of being against any
service for autistics. She's anything but, she says, describing
herself as a "big fan" of assistance. She believes all autistic
children should have access to technology that can help them
communicate. The structure of music also helps autistic children
learn, she says, and she wishes they all had pianos in their homes.
She claims to not even be completely against ABA .
"I'm not anti-ABA," says Dawson . "I'm a much harsher critic of my own
fields of study, cognitive science and neuroscience. "
But unlike in the science world, where criticism is not only welcomed
but encouraged, Dawson says objections to the practices of advocates
are never well received.
Because of her frequent and detailed critiques of ABA , Dawson says she
often receives hate mail. She's been accused of being a fraudulent
researcher. Some ABA supporters claim she's lying about her diagnosis.
Some parents claim she's trying to destroy their children.
It's no surprise that Dawson is threatening to ABA advocates. She
doesn't care about their intentions, only their actions. She doesn't
care about advocacy politics, only facts. She's blunt. Her opinions
are plentiful, strong, sugar-coating- free.
"She has a certain number of enemies because she's quite tough," says
her colleague Mottron. "When she argues, she doesn't concede anything."
But Dawson insists her goal isn't to agitate advocates. She simply
wants them to pursue services ethically and responsibly. She wants
autistics to be treated with respect. She wants everyone to realize
there is still much to learn about autism.
"The point is not for you to be right and for your side to be right;
the point is to try to do the best you can to understand autism and to
make it possible for autistics to have good outcomes. To do that you
need accurate information.
"Accurate information is always good for autistic people. It might not
be good for advocates, it might not be good for lawyers, it might not
be good for lobby groups, it might not be good for various vested
interests, it might not even be good for researchers, it might not be
good for funding bodies, but it is always good for autistic people."
© The Ottawa Citizen 2007
From a Listmate
Toronto Sun
Sun, December 2, 2007
By: Susan Sherring
Autism
Piecing it Together
The headline screams out -- Fighting for My Autistic Son.
And there, on the front of a recent People magazine, is the beautiful and blond Jenny McCarthy, promising to tell readers about her son Evan's surprising breakthrough and how funnyman Jim Carrey helped her heal. Heady, eye-catching stuff.
Doesn't hurt that son Evan is also picture perfect with his blond curls and blue eyes.
Like other parents, McCarthy found herself surfing the Internet in search for help after her son's "devastating diagnosis."
Shortly afterward, she began a wheat and dairy free diet for son Evan, telling People she almost immediately noticed a positive change in his behaviour and his speech.
Problem is, there's no good scientific evidence to prove a relationship between diet and improved behaviour for autistics.
It's all anecdotal, though hundreds of parents swear by its effectiveness. (Research is now ongoing at the University of Western Ontario looking for a link between food and autism.)
But, for now, in the world of autism, it's just one of the many unknowns. Diagnosis isn't easy. There's no simple blood test, but a complex assessment looking at skills in three basic areas: Communications, socialization and behaviour.
In many cases, with treatment, behavioural problems associated with autism can be modified, but the mainstream medical community will tell you it can't be cured.
In Canada , there's still no national strategy, no uniform level of care. And while resource groups exist, families who receive a diagnosis of autism for their precious child often feel abandoned by the system, making their way through a maze of information and paperwork, having to decide for themselves what treatment route to take and how to cope with an often out-of-control child.
In the summer of 2006, when Tara Schuessler first heard her three-and-a-half year old daughter Kaelen was autistic, her world immediately changed.
"We sort of knew she had autism before we had the diagnosis. All the signs were there. So it wasn't a shock, but it was still devastating," Schuessler said.
"I guess before I did the research, the word autism was very startling."
For many people, the only understanding they have of autism comes from the movie Rainman, portrayed by Dustin Hoffman.
"Then (with research), we realized what a vast spectrum autism really was. There's such a range and there's so much complicated terminology. It's so complicated.
"I find myself educating my family and friends," Schuessler said.
She and husband Mark settled on Applied Behaviour Application (ABA) treatment, the most commonly accepted treatment.
" ABA , in my opinion, is the only scientific, evidence-based treatment that works," she said. Rather than let Kaelan get worse while languishing on a waiting list, they paid for private therapy.
"When I reflect back, and l look at other families who have it worse, my husband and I knew the right steps to take. We knew what we had to," she said, adding they can only afford nine hours of therapy a week, the minimum recommended.
"But she's responded, and I know it doesn't work for everybody. We're going to do private therapy for as long as we can."
Kaelen, now four-and-a-half, is in a regular school with a support worker helping out.
"She now speaks in full sentences. She's quite social, doing well. We're really optimistic, though we try not to think too long term, not too far in advance," she said.
Many mysteries remain.
The biggest unknown is the cause and the cure.
The medical community doesn't have an answer for either one.
Another of the great unknowns?
While many in the field believe autism is on the rise, reaching epidemic proportions, that too has a big question mark over it.
Has it really reached a crisis situation?
The medical community isn't in agreement whether there are actually more people with autism or if it's simply being diagnosed more. That the definition of autism is more inclusive and better understood.
Another controversy? Childhood vaccines. While the scientific community has studied a connection between vaccines and autism, and ruled it out as a cause, some parents still can't help but believe there's a connection between the timing of childhood vaccines and the change in their child.
While struggling with the diagnosis, and learning to cope with a child with autism, many parents find themselves also fighting the system, lobbying to bring attention -- and increased funding and research -- to the issue of ASD.
It appears to be paying off.
After years of languishing on the backburner, autism is finally getting some of the attention it deserves.
Researchers at the Offord Centre for Child Studies heralded a breakthrough with an international consortium in the discovery of one gene and a previously unidentified region of another chromosome as the location of another gene that may contribute to a child's chances of having autism.
The findings were based on genetic samples from nearly 1,200 families with two or more children who have autism, and it's a study Canadians took part in.
The work is considered a major breakthrough to better understanding the disorder and improving diagnosis and treatment.
It's hoped the new information in hand with researchers are one step closer to finding the specific genes that cause autism.
But with words like epidemic and crisis tossed about, the issue is also finally getting the ear of some sympathetic politicians.
Case in point? In the recent provincial election, the New Democratics and the Progressive Conservatives both targeted autism as an important election issue, both featuring election ads addressing the importance of increased funding for autistic children.
This past summer, it was revealed the Ontario government had spent more than $2.4 million in taxpayer dollars on a seven-year court battle just to fight parents of autistic children.
In Ottawa , Tory MPP Lisa McLeod has also played a province-wide role in getting autism front and centre .
After she defeated New Democrat opponent Laurel Gibbons in a byelection last year, she asked Gibbons to join forces with her to push for change.
Gibbons, who has an autistic child, has used elections to push forward the issue of increased funding and research for autism.
"This shouldn't be about party politics," said McLeod. "I was very involved in writing my party's platform and autism and much of it came from Laurel ."
As documented in a recent Senate committee report, things are changing, albeit slowly.
"A generation ago, the vast majority of the people with autism were eventually placed in institutions, while many others were misdiagnosed," the report, released in March, reads.
The people who help families also see more attention given to the issue.
Brenda Reisch is the charity co-ordinator for Children at Risk, a support group for families with autism. They try to fill in where they see a void, like its sibling support group, which helps brothers and sisters of autistic kids.
"It's all parent-power," said Reisch. "We screamed and we yelled and we launched court cases. If we sit back, nothing happens. But it's extremely exhausting, and a lot of people get burned out, a lot of marriages fail," she said.
Her son Ian, about to turn 15, was diagnosed with autism when he was 18 months.
"My child is 24/7, he can't be left alone," adding he's closer in development to a five or six-year-old. "He has no sense of danger. I describe him as a locomotive without the engineer. He has the physical ability to do anything, but not the cognitive sense, and now that he doubles and triples in age, it's extremely wearing," she said.
But while she sees change, she doesn't think most people really have any understanding about what autism really means.
"Unless your living with it, or know someone who's living with it, it's hard to understand. It's a cognitive disability and it's scary if you don't understand it. You can't see it like you can a physical disability."
"Our kids don't look disabled, but their behaviour is so off the wall."
---
WHAT IS AUTISM?
Autism, or Autism Spectrum Disorder as it's now called, is described as a neurological disorder which causes developmental disability. The spectrum refers to the severity or developmental impairment -- which of course in turn -- also affects the level of functioning.
ASD results in problems in communication and social interaction, along with behaviour problems.
In extreme cases, there can be out-of-control temper tantrums, throwing of objects, angry outbursts and absolute meltdowns.
The symptoms vary significantly from child to child. No two autistic children are alike. Depending on where they are on the Autism Spectrum, some can't communicate with others or be left alone. Others -- like those with Asperger's -- make it to university and hold down jobs.
---
AUTISM REPORT
What a recent Senate report says on autism
It is unclear whether the actual prevalence of ASD is changing over time, but the number of diagnoses has been on the rise. Currently, the rate often cited for ASD in Canada is six per 1,000, or one in 166 and is consistently detected three to four times more often in boys than in girls. This translates to about 48,000 autistic children aged zero to 19 and 144,000 adults within Canada .
------------------------------------------------------------------------------------------------------
other cities
Mon, December 3, 2007
By: Susan Sherring
Autism
Waiting for the cure
Imagine worrying there is something wrong with your child -- a child that for months since birth has appeared perfectly normal.
Then, without warning, your child has stopped progressing, withdraws from the world, exhibits behavioural problems.
After months of waiting for a diagnosis, you receive the news. Your child is autistic.
Then imagine the most heart-wrenching, unfair news of all.
There is a treatment which has proven to help autistic children, especially for those diagnosed early on, but you now find yourself on a waiting list, years long.
The most common treatment is Applied Behavioural Analysis (ABA) or Intensive Behavioural Intervention (IBI) -- essentially the breaking down of routines into smaller, manageable portions, with repetition, prompting and reinforcement. But this treatment isn't immediately available through government funding.
Many families face financial ruin trying to do the best for their child, cashing in their RRSPs or mortgaging their homes to fund private treatment as they wait for government treatment.
Others turn to the Internet -- swayed by the promises of close to miraculous treatments.
Chantise Araujo's youngest son Clark was diagnosed with autism in November of 2006, when he was two.
"We were told that we did a great job catching it when he was so young as early intervention is the key, and then were told that we would have to wait months and even years for some services."
Clark has since started to receive occupational therapy but rather than wait for a government-funded spot, they dipped into their RRSPs to pay for private ABA therapy, initially three days a week, three hours each day. Araujo has gone back to work so Clark can attend five times a week. Her entire paycheque goes to the weekly $600 cost.
The kicker is that ABA has made such a difference that the family has been told Clark might not be autistic enough for government-funded treatment. Frustrating? You bet.
"He's not autistic enough, it's so utterly ridiculous. It's kids like him who can benefit the most. He has a chance of leading a relatively normal life, it actually makes more sense to invest in him," said Araujo.
All provinces and territories, with the exception of Nunavut , provide some funding for autism therapy, most notably for ABA/IBI. Parents can spend as much as $40,000 to $60,000 for a full-time ABA program. But there is no national program to ensure uniform and equitable access to therapy.
A Senate committee report on autism says all available treatment approaches should be monitored for effectiveness and treatment regimes should be provided based on scientific evidence -- not false hopes and dreams.
Harmful therapies should be discredited or even prohibited, the report continues.
When Jennifer Kozij's son William was diagnosed as autistic at the age of two-and-a-half, she couldn't comprehend the waiting list.
When she heard about a treatment program called Son-Rise, she headed to the Internet, with no medical professionals to help her.
The home-based program operating in Europe since 1983, hasn't caught on in Canada . While it doesn't promise a cure, it comes close.
"Children with autism have the potential for extraordinary healing and growth," the site reads. The program emphasizes joining in your child's behaviour instead of going against them.
So when William ran, skipped or hopped around the house, so did his sisters and parents. As they followed him, he began to check to see if they were there, and would smile if they were.
Despite the lack of medical expertise available, Kozij said she had no concerns about going to the States for a week to learn the program.
"I wasn't frightened by making the decision at all, I felt it worked for our family," she said. "We were just left with a diagnosis, and we had to do something. This fit with our personality, our family. It was very child-directed. It gave the girls an opportunity to interact with William."
William, now six, has a support worker paid for by the family. "He is quite bright, same level as his peers, he's not on special learning. But he lacks focus, has trouble following through, forgets what he's doing, has social needs. But he's not disruptive," she said.
Araujo sums up the sentiment of so many families who struggle to find their way through a world of bureaucratic mazes, myths, and mysteries.
"We can't afford this, but we really have no choice because the alternative is too awful."
----
TREATMENT METHODS
ABA: Children work one-on-one with a professional. Skills are broken down into smaller steps. Each step is taught using positive reinforcement and then grouped with the other steps until an entire skill is learned.
Other treatments which include ABA principles are referred to as Intensive Behavioural Intervention (IBI), Early Intensive Behavioural Intervention (EIBI) or Applied Intensive Behavioural Intervention (AIBI) or simply, behavioural treatment.
- Applied Verbal Behaviour: Often used within ABA-based programs. Focuses on verbal communication skills.
- Relationship Development Intervention (RDI): Teach children how to develop relationships, first with parents and later with peers. Intended to address development of social skills and friendships.
- Floor Time: Focuses on developmental gains. It's a form of play therapy based on six stages of emotional development. Also known as Developmental, Individual-Difference, Relationship (DIR) model.
- The Son-Rise Program: Teaches families to join in with their children instead of going against them -- accepting their behaviour instead of trying to fight it. Encouraged to join in on the repetitive and ritualistic behaviours.
- Diet: Research is ongoing about the effect of diet change, although there is plenty of positive anecdotal evidence, like the removal of gluten and casein from the diet, vitamin supplements, and yeast free diets.
- The DAN! Protocol: Involves a medically supervised combination of changes to the diet and implementation of vitamin and supplement therapy as a means of producing changes in autistic behaviours. Treatments to detoxify the body are also part of the program.
From a listmate
An article by Donna Williams
http://www.donnawilliams.net
1) that all autistic people are visual thinkers - in fact 60-65% of
non-autistic people are visual thinkers and by contrast, only 30% of
non-autistic people report thinking in words.
2) that all autistic people learn best pictorially (ie via PECS ) - in
fact those with visual agnosias (meaning blindness) as part of their
autism will often fail to learn pictorially when they may learn via
gesture and physical patterning instead.
3) that ABA suits all children with autism - in fact whilst this may
be useful for those with personality traits which are motivated by
attention, praise, admiration, those with autism who have acute
Exposure Anxiety issues may be severely inhibited and develop far more
challenging behaviours when overtly forced to comply and receive what
they perceive as invasive praise and attention for this unpalatable
compliance.
4) That autistic people are all good at science and engineering - in
fact many cannot internally mentalise and may be limited in skills
requiring internal multi-facetted mentalising, yet be good at musical
(rote, rhythmic) or kinesthetic (hands on, physical patterning)
learning.
5) That those with autism grow up to be people with Asperger's -
whilst some appear to have Asperger's once they reach their later
years, the patterns of sensory perceptual and cognitive challenges in
autism and Asperger's are related but different patterns and many who
are autistic as children still fit autistic patterns of sensory
perceptual and cognitive differences as adults, not those usual in
Asperger's.
6) That there is a 'pure' autism and that co-morbid disorders are
something separate - in fact around 30% of people with autism are
thought to have co-morbid disorders so who is defining what's 'pure'?
Many of these co-morbid disorders when combined are indistinguishable
from DSM symptoms of autism and so remain undiagnosed for years, even
decades due to these being seen as 'part of the autism', especially
part of someone being 'low functioning'; a self fulfilling prophecy.
7) That all 'autistics' speak with one voice - in fact the range of
combined underlying challenges can be so diverse that that this is no
more true than saying all non-autistics speak with one voice. Those
with certain agnosias, can't imagine the perceptual worlds of those
with others. Those without co-morbid disorders can't imagine the
realities of those with them. Those with dyspraxia, dystonia and
tactile agnosias experience different relationships to their bodies to
those without these. those with acute Exposure Anxiety experience a
different social-emotional world and relationship to body to those
without this. There are often more differences than similarities even
when the combined effect of each person's 'autism fruit salad' equally
fits the same DSM.
8) That there is one condition called autism - when it may well be
there is one word and many underlying different combinations of
multiple conditions which, when combined, result in different
expressions and degrees of what appears 'autistic'.
the list goes on.
So we must not only look at myths and stereotypes of the past but
those of the present.
We may well be the fools of tomorrow.
Donna Williams
> http://www.donnawilliams.net
> --
> Donna Williams *)
> author, artist, screenwriter, composer.
Ever the arty Autie.
http://www.donnawilliams.net
> http://www.auties.org
From a Listmate
Sun, December 2, 2007
Great expectations
UPDATED: 2007-12-02 01:56:23 MST
Canadians families rush to Alberta in search of better treatment for kids with autism
By TARINA WHITE
Desperate families of autistic children flock to Alberta , optimistic this province will provide treatment and hope of a better life for their children.
The Autism Calgary Association was inundated last summer with hundreds of requests for assistance from families across the country.
Program director Colleen Eggertson said she was overwhelmed by the sheer volume of Canadians rushing to Alberta in search of support for their autistic children's needs.
"We couldn't keep up," she said.
"They just picked up their stuff and drove here."
The rush was prompted by media reports Alberta offers among the best funding for autism treatment compared to the rest of the country, said the association's executive director Lyndon Parakin.
On paper, the province arguably offers the best funding model nationwide for autism treatment, he said.
But in reality, accessing programs and services often proves difficult, said Parakin.
"Families struggle to qualify," he said.
"When they do qualify, there's a lack of service professionals to deliver treatment."
Marie-Claude Osterrath and husband Mark Oliver know first hand the battle to obtain government assistance for an autistic child in Alberta .
After living overseas for a number of years, they returned to Canada five years ago in search of the best treatment support for their son, Matthew.
"We chose this province because of the rumours that it was better," said Osterrath.
Matthew was three when the family arrived in Alberta , and the funding scheme offered was the best for his age group compared to the rest of the country, she said.
But once he reached the age of six, securing funding for treatment became a losing battle, said Osterrath.
"Now that Matthew's eight, wherever we go in Canada , we would have to fight," she said.
"We have had to fight here in Alberta just as much and we have just given up the fight for specialized services because it was such a tremendous stress."
The province focuses its autism treatment funding on children under six because early intervention is considered the most beneficial, said Parakin.
Matthew now receives minimal treatment services from the province, said Osterrath, adding the therapists provided aren't always sufficient.
"Some people get lucky ... and some people get the people who are punching in the time on the clock," she said.
Determined to provide their child with the best shot at life, the family is paying out of pocket to hire their own behavioural therapists to work with Matthew -- at a cost of about $12,000 a year.
An occupational therapist and a behavioural therapist are teaching Matthew simple daily tasks, such as brushing his teeth and dressing himself.
Affected by sensory overload, Matthew screams, runs away and has trouble standing still long enough to complete such basic tasks.
"He has to learn in tiny, tiny steps," said Osterrath.
For researchers, the often-misunderstood world of autism remains a puzzle.
Dr. Deborah Dewey, director of the behavioural research unit at the Alberta Children's Hospital, has been studying behavioural problems, including autism, for almost two decades.
"It's a very complex disorder and I don't think it's just one disorder," she said, pointing to similarities with Attention Deficit and Hyperactivity Disorder (ADHD), as well as speech and reading impairments.
Autism is a lifelong communication and behavioural disorder that about one-in-200 Canadians is born with.
The causes of autism are still largely unknown, but Dewey believes researchers have made great strides in attempting to unlock the mystery.
"I think we're gaining -- there's a lot of new knowledge that's coming out," she said.
Dewey, a University of Calgary research neuropsychologist, is currently studying the interaction between autistic children and those with ADHD, dyslexia and motor impairments.
"By looking at all these different groups of children who have significant developmental disorders, it helps us understand the similarities among these disorders," she said.
Strong debate and controversy surrounds the possible causes of autism.
Some blame vaccinations for the onset of symptoms, typically by the age of two, while others point to environmental toxins, neurological developmental issues and genetics, said Dewey.
Many of the answers to autism likely lie in genetic research, she said.
"I think we are narrowing in on some of the possible genetic bases," said Dewey.
"There have been such advances in the field over the last 15 years just looking at the brain imaging techniques.
"It gives me hope. But it's very complex -- we still have a lot more to learn."
For Matthew's family, the positive changes treatment has brought about in him are encouraging.
Several years ago, he didn't speak or respond to his name, he twirled toys incessantly and had no interest in connecting with other children.
Today, he still displays symptoms of severe autism, but he has learned to say key phrases that enable him to ask for food and to go to the bathroom.
"He's way more connected -- he pays attention to his peers," said Osterrath.
"My goal in life is to find a place in life where he can realize his potential."
From a listmate
House of Commons
Hansard
Friday, November 30, 2007
STATEMENTS BY MEMBERS
Autism
Mr. Peter Stoffer ( Sackville-Eastern Shore , NDP):
Mr. Speaker, we know the government has a habit of ignoring
motions
passed by the House by the opposition, but it is really incredible
when it ignores a motion that it supported.
Earlier this year, the House unanimously passed a motion to deal with
the situation of autism in our country. The government sits on
billions and billions of dollars of surplus, yet not one additional
penny is available to coordinate with the provinces and territories
assistance for children with autism and their families.
What is the government waiting for? The governments of Europe and of
the United States are moving very quickly with a huge investment
to
assist these children with autism and their families, yet the
Conservative government ignores a motion by the House to have a
meeting with the provinces and territories to deal with a national
plan and with this crisis.
Given the right opportunity and the right investment, these children
could have an opportunity that all children in the country have.
Autistic children are living in the most beautiful country in the
world. It is time the government stood up and honoured that
commitment.
From a listmate
Seventh of Canadians have disability
The Canadian Press
December 3, 2007 at 10:13 AM EST
TORONTO — A new Statistics Canada survey reveals that one out every seven people in the country is living with a disability.
An estimated 4.4 million Canadians reported having a disability in 2006, an increase of more than 750,000 people over the past five years.
While the report suggests that one factor in the increase is the aging of the population, StatsCan says this played only a partial role, and that increased social acceptance of reporting disabilities may also be a factor.
For adults, the most significant jump was seen in the area of learning disabilities.
The number of Canadians aged 15 and over living with a learning disability increased by almost 40 per cent to an estimated 631,000 people.
Meanwhile for children aged 5 to 14, the likelihood of having several disabilities was much higher, with nearly three-quarters of school-aged children with a disability reporting having multiple disabilities.
From a Listmate
Fever can unlock autism's grip temporarily
Updated Mon. Dec. 3 2007 10:50 AM ET
CTV.ca News Staff
Fever can temporarily improve the behaviour of children with autism spectrum disorder, researchers have found in a surprising study that may shed further light on the condition.
The researchers think that a high fever has an effect on behaviour because it restores nerve cell communications in regions of the autistic brain. That then restores the child's ability to interact and socialize.
The small study, published in the journal Pediatrics, is based on 30 children with autism aged 2 to 18. The researchers asked the parents of the children to record their children's behaviour during a fever of at least 100.4 degrees Fahrenheit, immediately after the fever had abated, and when the child had been fever-free for seven days.
The parents recorded fewer aberrant behaviors, such as stereotypy (repeated, ritualistic movements), irritability, hyperactivity, and inappropriate speech during and immediately after a fever.
The behavior improvement occurred regardless of the severity of the fever and the illness. As expected, the improvements in behaviour ended when the fever broke.
The researchers say their findings suggest that the behaviour changes were not solely the result of the sickness itself. But they say more research is needed to confirm the link, and to determine the causes of the behaviour change.
Dr. Andrew Zimmerman, a pediatric neurologist at Baltimore 's Kennedy Krieger Institute, who was one of the study authors, says the findings give researchers important clues about autism.
'The results of this study are important because they show us that the autistic brain is plastic, or capable of altering current connections and forming new ones in response to different experiences or conditions,' he said.
He said the effect of fever on behaviour was likely to be observed only in children, whose brains are more 'plastic' than those of adults.
Zimmerman hopes the research could point the way to better treatments that would 'reconnect' the autistic brain.
People with autism spectrum disorders suffer in varying degrees from limited social interactions, lack of verbal and non-verbal communication and other abilities. It is not known what causes the condition.
From a listmate
Waiting on a cure for autism
Provided by: Sun Media
Written by: SUSAN SHERRING
Dec. 3, 2007
AUTISM, Part II:
Imagine worrying there is something wrong with your child -- a child that for months since birth has appeared perfectly normal.
Then, without warning, your child has stopped progressing, withdraws from the world, exhibits behavioural problems.
After months of waiting for a diagnosis, you receive the news. Your child is autistic.
Then imagine the most heart-wrenching, unfair news of all.
There is a treatment which has proven to help autistic children, especially for those diagnosed early on, but you now find yourself on a waiting list, years long.
The most common treatment is Applied Behavioural Analysis (ABA) or Intensive Behavioural Intervention (IBI) -- essentially the breaking down of routines into smaller, manageable portions, with repetition, prompting and reinforcement. But this treatment isn't immediately available through government funding.
Many families face financial ruin trying to do the best for their child, cashing in their RRSPs or mortgaging their homes to fund private treatment as they wait for government treatment.
Others turn to the Internet -- swayed by the promises of close to miraculous treatments.
Chantise Araujo's youngest son Clark was diagnosed with autism in November of 2006, when he was two.
"We were told that we did a great job catching it when he was so young as early intervention is the key, and then were told that we would have to wait months and even years for some services."
Clark has since started to receive occupational therapy but rather than wait for a government-funded spot, they dipped into their RRSPs to pay for private ABA therapy, initially three days a week, three hours each day. Araujo has gone back to work so Clark can attend five times a week. Her entire paycheque goes to the weekly $600 cost.
The kicker is that ABA has made such a difference that the family has been told Clark might not be autistic enough for government-funded treatment. Frustrating? You bet.
"He's not autistic enough, it's so utterly ridiculous. It's kids like him who can benefit the most. He has a chance of leading a relatively normal life, it actually makes more sense to invest in him," said Araujo.
All provinces and territories, with the exception of Nunavut , provide some funding for autism therapy, most notably for ABA/IBI. Parents can spend as much as $40,000 to $60,000 for a full-time ABA program. But there is no national program to ensure uniform and equitable access to therapy.
A Senate committee report on autism says all available treatment approaches should be monitored for effectiveness and treatment regimes should be provided based on scientific evidence -- not false hopes and dreams.
Harmful therapies should be discredited or even prohibited, the report continues.
When Jennifer Kozij's son William was diagnosed as autistic at the age of two-and-a-half, she couldn't comprehend the waiting list.
When she heard about a treatment program called Son-Rise, she headed to the Internet, with no medical professionals to help her.
The home-based program operating in Europe since 1983, hasn't caught on in Canada . While it doesn't promise a cure, it comes close.
"Children with autism have the potential for extraordinary healing and growth," the site reads. The program emphasizes joining in your child's behaviour instead of going against them.
So when William ran, skipped or hopped around the house, so did his sisters and parents. As they followed him, he began to check to see if they were there, and would smile if they were.
Despite the lack of medical expertise available, Kozij said she had no concerns about going to the States for a week to learn the program.
"I wasn't frightened by making the decision at all, I felt it worked for our family," she said. "We were just left with a diagnosis, and we had to do something. This fit with our personality, our family. It was very child-directed. It gave the girls an opportunity to interact with William."
William, now six, has a support worker paid for by the family. "He is quite bright, same level as his peers, he's not on special learning. But he lacks focus, has trouble following through, forgets what he's doing, has social needs. But he's not disruptive," she said.
Araujo sums up the sentiment of so many families who struggle to find their way through a world of bureaucratic mazes, myths, and mysteries.
"We can't afford this, but we really have no choice because the alternative is too awful."
----
TREATMENT METHODS
ABA : Children work one-on-one with a professional. Skills are broken down into smaller steps. Each step is taught using positive reinforcement and then grouped with the other steps until an entire skill is learned.
Other treatments which include ABA principles are referred to as Intensive Behavioural Intervention (IBI), Early Intensive Behavioural Intervention (EIBI) or Applied Intensive Behavioural Intervention (AIBI) or simply, behavioural treatment.
- Applied Verbal Behaviour: Often used within ABA-based programs. Focuses on verbal communication skills.
- Relationship Development Intervention (RDI): Teach children how to develop relationships, first with parents and later with peers. Intended to address development of social skills and friendships.
- Floor Time: Focuses on developmental gains. It's a form of play therapy based on six stages of emotional development. Also known as Developmental, Individual-Difference, Relationship (DIR) model.
- The Son-Rise Program: Teaches families to join in with their children instead of going against them -- accepting their behaviour instead of trying to fight it. Encouraged to join in on the repetitive and ritualistic behaviours.
- Diet: Research is ongoing about the effect of diet change, although there is plenty of positive anecdotal evidence, like the removal of gluten and casein from the diet, vitamin supplements, and yeast free diets.
- The DAN! Protocol: Involves a medically supervised combination of changes to the diet and implementation of vitamin and supplement therapy as a means of producing changes in autistic behaviours. Treatments to detoxify the body are also part of the program.
From a listmate
Imagine worrying there is something wrong with your child -- a child that
for months since birth has appeared perfectly normal.
Then, without warning, your child has stopped progressing, withdraws from
the world, exhibits behavioural problems.
After months of waiting for a diagnosis, you receive the news. Your child is
autistic.
Then imagine the most heart-wrenching, unfair news of all.
There is a treatment which has proven to help autistic children, especially
for those diagnosed early on, but you now find yourself on a waiting list,
years long.
The most common treatment is Applied Behavioural Analysis (ABA) or Intensive
Behavioural Intervention (IBI) -- essentially the breaking down of routines
into smaller, manageable portions, with repetition, prompting and
reinforcement. But this treatment isn't immediately available through
government funding.
Many families face financial ruin trying to do the best for their child,
cashing in their RRSPs or mortgaging their homes to fund private treatment
as they wait for government treatment.
Others turn to the Internet -- swayed by the promises of close to miraculous
treatments.
Chantise Araujo's youngest son Clark was diagnosed with autism in November
of 2006, when he was two.
"We were told that we did a great job catching it when he was so young as
early intervention is the key, and then were told that we would have to wait
months and even years for some services."
Clark has since started to receive occupational therapy but rather than wait
for a government-funded spot, they dipped into their RRSPs to pay for
private ABA therapy, initially three days a week, three hours each day.
Araujo has gone back to work so Clark can attend five times a week. Her
entire paycheque goes to the weekly $600 cost.
The kicker is that ABA has made such a difference that the family has been
told Clark might not be autistic enough for government-funded treatment.
Frustrating? You bet.
"He's not autistic enough, it's so utterly ridiculous. It's kids like him
who can benefit the most. He has a chance of leading a relatively normal
life, it actually makes more sense to invest in him," said Araujo.
All provinces and territories, with the exception of Nunavut , provide some
funding for autism therapy, most notably for ABA/IBI. Parents can spend as
much as $40,000 to $60,000 for a full-time ABA program. But there is no
national program to ensure uniform and equitable access to therapy.
A Senate committee report on autism says all available treatment approaches
should be monitored for effectiveness and treatment regimes should be
provided based on scientific evidence -- not false hopes and dreams.
Harmful therapies should be discredited or even prohibited, the report
continues.
When Jennifer Kozij's son William was diagnosed as autistic at the age of
two-and-a-half, she couldn't comprehend the waiting list.
When she heard about a treatment program called Son-Rise, she headed to the
Internet, with no medical professionals to help her.
The home-based program operating in Europe since 1983, hasn't caught on in
Canada . While it doesn't promise a cure, it comes close.
"Children with autism have the potential for extraordinary healing and
growth," the site reads. The program emphasizes joining in your child's
behaviour instead of going against them.
So when William ran, skipped or hopped around the house, so did his sisters
and parents. As they followed him, he began to check to see if they were
there, and would smile if they were.
Despite the lack of medical expertise available, Kozij said she had no
concerns about going to the States for a week to learn the program.
"I wasn't frightened by making the decision at all, I felt it worked for our
family," she said. "We were just left with a diagnosis, and we had to do
something. This fit with our personality, our family. It was very
child-directed. It gave the girls an opportunity to interact with William."
William, now six, has a support worker paid for by the family. "He is quite
bright, same level as his peers, he's not on special learning. But he lacks
focus, has trouble following through, forgets what he's doing, has social
needs. But he's not disruptive," she said.
Araujo sums up the sentiment of so many families who struggle to find their
way through a world of bureaucratic mazes, myths, and mysteries.
"We can't afford this, but we really have no choice because the alternative
is too awful."
From a listmate
Please forward the following notice to anyone who might be interested in attending.
For workshop details click here: http://www.afase.com/Workshop.html
Click here to register: http://www.afase.com/Workshop_Registration.html
AFASE at school
Presents
Advocating For Appropriate Special Education 114
Saturday, January 5, 2008
10:00 a.m. – 4:00 p.m.
This full-day workshop is designed to empower you by providing current special education
information, strategies, and skills that will enable you to advocate for appropriate special education
programs and services in a way that is both assertive and collaborative
Audience: Parents, Students, Teachers, Educational Assistants, and Community Organizations
Lindsay Moir who is retired from the Ministry of Education is considered to be an expert in special
education issues. He will present an interactive, discussion-based workshop on Current Issues in
Special Education.
Karen Robinson the owner of AFASE at School will present Special Education Advocacy:
Everything you Should Know. Topics include: The Rules of Advocacy, The Special Education
Program, IPRC's and the Appeal Process, The good IEP, Writing Measurable Goals and Expectations,
and Writing Needs Statements.
Each presentation will allow time for Q & A
Coffee and pastries, and a light lunch will be provided
Toronto Police Services
42 Division, Community Meeting Room
242 Milner Ave. E.
Toronto , Ontario M1S 5C4
General area: North of Hwy 401, West of Markham Rd.
SPACE IS LIMITED - REGISTER EARLY TO RESERVE YOUR SPOT
*Early bird rate: $80.00
*At the door: $100.00
To register use the registration form using this link
http://www.afase.com/Workshop_Registration.html
or e-mail: karen.robinson@afase.com
or phone: 905-427-7524
*Fee includes refreshments and handouts for each presentation
From a listmate
1 in 7 Canadians live with disability: StatsCan TheStar.com - Canada - 1 in 7 Canadians live with disability: StatsCan
December 03, 2007
THE CANADIAN PRESS
The number of people living with disabilities is on the rise accounting for one in seven Canadians, with learning disabilities representing the biggest jump, according to a report released today.
The Statistics Canada survey revealed that an estimated 4.4 million Canadians reported having a disability in 2006, up from 3.6 million in 2001. In 2006, 14.3 per cent of the population reported having an disability, up from 12.4 per cent five years earlier.
The report was based on information gathered from the Participation and Activity Limitation Survey (PALS), the first in a series of staged releases in the coming months examining Canadians living with disabilities.
The figures include people living outside of institutions living in private households or in some form of collective dwelling.
While the report suggests one factor in the increase was the aging of the population, Statistics Canada says this played only a partial role, and that increased social acceptance of reporting disabilities may also be a factor.
"If the disability rate in PALS had been 13.2 (per cent) we would have said, `You know, really nothing's changed from 2001, it's just a matter that the population has aged and the distribution has changed," said Susan Stobert, manager of the survey.
"But we're at 14.3 (per cent), which says that 40 per cent of the increase in disability can be explained by population aging, but that there's another 1.1 percentage point rise on average that's outside of the aging that says more people in each age group are reporting activity limitations."
The number of Canadians aged 15 and over living with a learning disability increased by almost 40 per cent to an estimated 631,000 people.
Stobert said the growing awareness of learning disabilities leading to increased diagnosis could account for the rise.
Meanwhile, for children aged five to 14, the likelihood of having several disabilities was much higher, with nearly three-quarters of school-aged children with a disability reporting having multiple disabilities.
Some 67 per cent of children reporting a disability said they had a chronic health condition-related disability while more than 69 per cent reported having a learning disability.
The most common chronic conditions reported were asthma or severe allergies, attention deficit disorder with or without hyperactivity (ADD/ADHD) and autism.
The survey release coincides with the International Day of Disabled Persons. The theme this year is focusing on how to ensure decent work for persons with disabilities.
Google alert
Autism
Fighting for funding
By SUSAN SHERRING
Sen. Jim Munson knows all too well about the feelings of alienation when your child doesn't fit the mold.
As the father of a boy born with Down syndrome, Munson says he understands the frustration felt by parents of children diagnosed with autism. Munson's son, Timothy, who died before reaching his first birthday almost 40 years ago, is part of the impetus for the former national television reporter, now senator, to push for the Senate Report on Autism.
Munson is tired of the turf wars over who is responsible for funding of treatment.
"As a nation, we have to take a look at all of this. We have an obligation as a society. For families with an autistic child, this is extremely expensive. You've got families breaking up, mortgaging their homes. I'm tired of the jurisdictional shell game," he said.
"The bottom line is we have to put it all on the table. If we don't, how are we ever going to have a national program? People are scrambling to get treatments for their sons and daughters."
It was one day on Parliament Hill back in Sept. 2004 when Munson first encountered Andrew Kavchak with a sandwich board around his neck.
Kavchak told him his story about his autistic child and his struggles for government-funded treatment
For Munson, it was a story that resonated.
"I cried with him. As a nation, we have to take a look at it, we have an obligation as a society. We have to do this for moral and financial reasons," Munson said, explaining how the concept of the senate inquiry, Pay Now or Pay Later, came about.
"I know what this is like, these kids will get institutionalized like the Down syndrome children of the '50s and '60s," Munson said.
Kavchak took to wearing his sandwich board after his son Steve was diagnosed at the age of two, but couldn't get treatment. He was told he was on a waiting list with the recommendation he seek private treatment.
"It was devastating for us," he said, adding they spent about $40,000 the first year alone.
"I remember very clearly one day I saw Sen. Munson walk by the Centennial Flame. He was very kind and I asked him to help. To my great satisfaction he listened.
"Sen. Munson has been our angel on the Hill," Kavchak said.
The report, released earlier this year, calls for a national autism strategy, dealing with a wide variety of issues -- everything from the undue financial burden often placed on parents to treatment and research.
"No matter how a National Autism Strategy is structured, witnesses were clear that individuals with ASD must be included in the consultation and play a role within the strategy itself, that it receive adequate ongoing funding, that it span the lifetime of affected individuals and that it strive to achieve consistency across the country in terms of information dissemination, assessment, treatments and supports," the report reads.
As the title of the report suggests -- Pay Now or Pay Later: Autism Families in Crisis -- there is a high price to pay if the needs of autistic children are ignored.
"The committee fully supports the view expressed by families with autistic children and autistic individuals themselves that governments must pay now; otherwise, they will pay later. We believe that the latter is simply not an option."
Recently, the Conservative government responded to the report, but the response is not nearly good enough for either Kavchak or Munson.
The response is more a regurgitation of what the federal government now does than a sign it's willing to adopt the recommendations of the Senate report. And the government doesn't suggest it will lead the way in forming a national strategy.
While it promises more research, it falls short of what was hoped for. One example: "As identified by the Senate Committee, there is a lack of consensus and evidence on ASD issues. Accordingly, governments do not yet know enough about ASD and its treatments to implement effective and well-informed strategies that would lead to meaningful outcomes," the response, released last month, reads.
But Munson said he won't stop pushing for what he believes in.
"We have to get together in one room- -- families, scientists, researchers, politicians, and close the door. Right now, we've got our heads stuck in the sand. This is too important, it's a crisis.
"We owe it to these people ... I have found a place and I use the motivation of our son to fight for families who have children with autism."
---
HIGHLIGHTS
Recommendations from the Standing Senate Committee report entitled: Pay Now or Pay Later -- Autism Families in Crisis
- The federal government establish a comprehensive National Autism Spectrum Disorder (ASD) Strategy.
- The federal government convene a federal/provincial/territorial ministerial conference to examine innovative funding arrangements for the purpose of financing autism therapy.
- The conference identify measures of accountability in the use of federal funds for autism treatment.
- The conference also define the feasibility of introducing measures such as supports for caregivers, including respite, family training and assistance, assisted living support as well as career and vocational training.
- Health Canada , in consultation with autistic individuals and other stakeholders, implement a national public awareness campaign.
- The federal government create an Autism Research Network --- and provides substantial new funding for this -- to work collaboratively with all stakeholders to develop an agenda.
- The federal government work collaboratively with the provinces and territories to address the human resource issues including training standards and inter-provincial mobility in the field of ASD.
- The federal government, in implementing the recommendations of the Minister of Finances Expert Panel on Financial Security for Children with Severe Disabilities, ensure that autism qualifies as an eligible disability.
- The Department of Finance and the Revenue Canada Agency study the implications of income splitting for ASD families and issue a report to the Minister of Finance by June 2008.
Next story: Autism
From a listmate
Dillon's story
An autistic child apple of his parents' eyes
By ALAN ROBERTS, SPECIAL TO SUN MEDIA
The wind blew across the ski hill as I stood looking up at the gate where Dillon was lined up waiting for his turn through the course. He rocked back and fourth in the gate, bending his knees and pushing his chest forward, anxious to get going.
Finally, the starter signalled and Dillon inched out of the gate, heading down the hill toward the first turn. A crowd at the starting line was yelling encouragement. As I watched and cheered, my eyes welled up with tears. Never in a thousand years did I believe I'd see Dillon skiing, let alone going through a slalom course with a crowd of well-wishers cheering him on.
I have no illusions of Dillon making the Canadian ski team, but to our family he has already become a "Crazy Canuck."
REALIZED FEARS
Dillon is 14 and has autism. He was first diagnosed with a global development delay at the CHEO when he was three years old. Six months earlier, when Dillon's mom and I had finally found the courage to speak our fears, we decided to do a self-referral to the Child Development Clinic at CHEO. After a series of cognitive tests, the medical panel told us what we already knew deep down in our hearts, but were too afraid to even say to one another.
Something was obviously very wrong with Dillon. The doctors didn't use the word autism, perhaps for fear of giving him a label that carries with it a lot of misunderstanding. But we knew, and they knew, he presented many of the classic systems associated with autism: Little or no response to communication, not meeting any of the language milestones, lack of eye contact, constant repetitive playing with the same toy, hand flapping and banging his head on the wall.
Since that initial diagnosis in 1996, our family has been on a rollercoaster ride trying to make sense of a neurological disorder no one really understands. Dillon is completely nonverbal and requires round-the-clock care even though he has benefited from constant intervention since first being diagnosed.
We were fortunate to get Dillon into the one nursery school in Ottawa that specialized in working with children on the autism spectrum. For two years, every morning he attended Thursday's Child nursery school sponsored by Children at Risk. In the afternoons we had an applied behaviour modification specialist work with Dillon on communication, behaviour, sensory integration and socialization skills. Thankfully, both Janine and I have good jobs because we were spending about $800 to $1,000 per month on the school and these services.
As with any parents who are confronted with a major problem in their child's life, we've tried to become experts on the "A" word. Reading articles, talking to other parents, surfing the Net and attending conferences all help, although at times we wonder are we doing enough, too much, or should we try some of the new interventions?
We've also been forced to become community fundraisers, advocates, lobbyists and political activists. Going out to another evening meeting, staffing a late-night bingo, writing yet another letter to a politician, or working the phone lines always seem that much harder to do after being up all night with a frustrated child who can't sleep, wants to run all over the house, but can't tell you why.
MANY CHALLENGES
All parents, special needs children or not, will usually agree every day brings another challenge. Most also agree many days also bring another milestone, celebration or special accomplishment. Thankfully, our life with Dillon is no different.
Last March, Dillon's mother Janine, brother Jeremy, Dillon and I all went on our first March Break holiday together. Before, when we'd gone away, Dillon had usually stayed behind because change is just too stressful for him. Last year, however, we opted to rent a ski chalet knowing full well that although the strange bed and surroundings might throw him a bit, skiing all day would certainly be something he'd really enjoy. We were right.
Many people have said over the years, "We don't know how you and Janine do it." The answer is really quite simple. We couldn't not do it because then we would miss out on seeing Dillon ski down the hill and hearing the crowd cheering him on.
From a listmate
Asperger’s Syndrome Gets a Very Public Face
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By TARA PARKER-POPE
Published: December 4, 2007
Heather Kuzmich has the neurological disorder known as Asperger’s syndrome. She is socially awkward, has trouble making eye contact and is sometimes the target of her roommates’ jokes.
Skip to next paragraph Tara Parker-Pope blogs about health. Join the discussion.
But what makes the 21-year-old Ms. Kuzmich different from others with Asperger’s is that for the past 11 weeks, her struggle to cope with her disability has played out on national television.
She is one of 13 young women selected by the supermodel Tyra Banks to compete on the popular reality television show “ America ’s Next Top Model.” The addition of Heather Kuzmich to an otherwise superficial show has given millions of viewers an unusual and compelling glimpse into the little-understood world of Asperger’s.
The disorder, considered a form of autism, is characterized by unusual social interaction and communication skills. Aspies, as people with the condition like to call themselves, often have normal or above-average intelligence, but they have trouble making friends and lack the intuitive ability to gauge social situations. They fail to make eye contact and often exhibit a single-minded fixation that can be both bizarre and brilliant.
By definition, people with Asperger’s are outside the mainstream. Even so, in recent months the syndrome has been cast into the limelight. “Look Me in the Eye,” a memoir about living with Asperger’s by John Elder Robison, who once created special effects for the rock band Kiss, has been a best-seller. In August, the Pulitzer Prize-winning music critic Tim Page wrote a poignant article for The New Yorker about life with undiagnosed Asperger’s.
Mr. Robison says the popular appeal of these stories may be due, in part, to the tendency of people with Asperger’s to be painfully direct — they lack the social filter that prevents other people from speaking their minds.
“It’s important because the world needs to know that there are tremendous differences in human behavior,” said Mr. Robison, whose brother is the writer Augusten Burroughs. “People are all too willing to throw away someone because they don’t respond the way they want. I think books like mine tell the world that there is more to us than that.”
But while Mr. Robison and Mr. Page tell the story of coping with Asperger’s from the perspective of men in their 50s, Heather Kuzmich is just beginning her life as an adult with the disorder. And it is often painful to watch her transition from socially awkward adolescent to socially awkward adult.
A gifted art student from Valparaiso , Ind. , she has a lean and angular look well suited to the fashion industry. But her beauty doesn’t mask the challenges of Asperger’s. The show requires her to live in a house with 12 other would-be models, and cattiness and backbiting ensue. Early in the show, she appears socially isolated, the girls whisper about her within earshot, and viewers see her crying on the phone to her mother.
One girl is frustrated when Heather, concentrating on packing a bag, doesn’t hear a request to move out of the way. At one point, the others laugh when they stake out their beds and Heather has no place to sleep.
“I wish I could get the joke,” Heather laments.
“You. You’re the joke,” retorts another model, Bianca, an 18-year-old college student who is from Queens .
But while Heather’s odd mannerisms separate her from her roommates, those same traits translate as on-the-edge high fashion in her modeling sessions. In interviews on camera, she often glances to the side, unable to hold eye contact. But Ms. Banks, the ’60s-era model Twiggy and the fashion photographer Nigel Barker, who all appear on the show, marvel at Heather’s ability to connect with the camera. The pop star Enrique Iglesias is so taken by her haunting looks that he chooses her for a featured role in a music video.
In an interview last week, Ms. Kuzmich played down the conflict with the other contestants, saying many more “civilized” exchanges weren’t broadcast. “They didn’t make fun of me that much,” she said.
She tried out for the show, she explained, partly to test her own limits. “It was a point in my life where I was thinking either Asperger’s was going to define me or I was going to be able to work around it,” she said.
To her surprise, she was voted the viewer favorite eight weeks in a row, making her one of the most popular contestants in the show’s four-and-a-half-year history. “I’m used to people kind of ignoring me,” she said in the interview. “At first I was really worried people would laugh at me because I was so very awkward. I got the exact opposite.”
Heather made it to the top five, but flubbed her lines while filming a commercial. Later, she got hopelessly lost in Beijing , managing to meet with only one out of five fashion designers. She was eliminated last week, but has since made appearances on “Good Morning America” and “Access Hollywood.” She says she hopes to continue modeling and eventually become a national spokeswoman for Asperger’s.
“I had no idea it would be this big,” she said. “My mom is beside herself. She watched me when I was a kid not have any friends, and she saw me struggle. She’s glad people are starting to understand this
From a listmate
Ask Lindsay Moir:
The impacts of full-day, everyday kindergarten
Friday, November 30, 2007
Question:
This week the Ministry of Education appointed Dr Charles Pascal to lead a new initiative to fund FULL-DAY, EVERY-DAY Junior and Senior Kindergartens as of the 2010-11 school year.
What do you see as the impact of this new initiative on special education and exceptional students?
Answer:
I believe that this initiative will have significant impact on special education programming across several ministries — this will not only affect the school system, it will impact on the pre-school and child-care sectors!
There is no doubt that the Teachers’ Federations are thrilled. At a time when most school boards are experiencing declining enrolment, and the resulting reduced demand for teachers, this certainly will result in more jobs for teachers (and more dues-paying members for the unions). There are many people who feel that Early Childhood Education can be done, and done well, by ECE graduates in a Day Nursery setting. This certainly would be much more cost-effective and focussed on a different style of learning and a different legislative framework. I believe that this announcement is a victory for the teachers’ federations, and will impact greatly on the Nursery School’s sector. We, as a province have chosen a very expensive way to address “preschool” education and day care issues. We need to ensure “a bang for our buck.”
Many settings like Children’s Treatment Centres are currently offering specialized programming for exceptional children up to Grade 1 age. Whether or not these programs are still feasible, if JK and SK students attend full-day, every-day school board programs, needs to be part of Dr. Pascal’s consultation. These programs are often integrated with specialized assessment and health services, as well as family support networks and services. Would the same level of service coordination be possible in a school board program? If the pupils are no longer attending the Centre programs, would the Centre continue the exemplary assessments that they now currently provide? Would the school board be able to assume this vital assessment role?
Mandates for speech and language services for exceptional children provided through CCACs, are often related to the child’s school enrolment status. If the student is not in fulltime attendance they are often still eligible for “pre-school” services. Children will now be entering the school system on a full-time basis two years earlier, therefore the effect of this on traditional “pre-school services” must be reviewed on an inter-ministerial basis.
A very few boards are currently offering full-day, every-day JK and/or SK programs, and are funding them out of regular grant revenue. The extended funding will be “good news” for these boards! Of course, I would expect them to “re-invest” these dollars back into Special Education services, since that is where the dollars often came from.
Some bus companies will be happy with the change since the total number of JK and SK student trips will be doubled. There will need to a corresponding increase in Transportation grants.
Will support staff be increased to support the increased number of hours that exceptional pupils will now be entitled to attend?
How will programs such as IBI therapy be integrated into the increased entitlement to attend school? Can therapy now be done within the school premises?
These are some of the issues that need to discussed by current pre-school service providers, professional associations, Human Services trainers at Community Colleges, parents and educators. Community-based consultations need to be a required part of Dr. Pascal’s mandate — this is not just “a school board issue” — it is inter-ministerial, it is multi-disciplinary, and it is of vital concern to parents of exceptional children.
Lindsay Moir retired from the Ministry of Education in 1997 and has been assisting agencies, associations and parents in obtaining appropriate special education services for exceptional pupils.
Family Net welcomes your questions about special education in Ontario .
E-mail Lindsay at ask.questions@yahoo.ca He will answer as many questions as possible.
From a listmate
Don't be discouraged if your letter is not printed. Sometimes they wait for the series to end and then print on a good read date like the weekend. However, only a small number actually make it in the paper even then but your feedback encourages the media to continue to pay attention to our issue and also provides an opportunity to further educate them.
Once again, here is the contact info:
Letter to the Editor - Toronto (1st article): editor@tor.sunpub.com
- Ottawa (2nd article): feedback@ott.sunpub.com
Susan Sherring (1st article and previous days): susan.sherring@sunmedia.ca
Taline
----------------------------------------------------------------------------------------
Toronto Sun
Tuesday, December 4, 2007
Autism
Fighting for Funding
By: Susan Sherring
Sen. Jim Munson knows all too well about the feelings of alienation when your child doesn't fit the mold.
As the father of a boy born with Down syndrome, Munson says he understands the frustration felt by parents of children diagnosed with autism. Munson's son, Timothy, who died before reaching his first birthday almost 40 years ago, is part of the impetus for the former national television reporter, now senator, to push for the Senate Report on Autism.
Munson is tired of the turf wars over who is responsible for funding of treatment.
"As a nation, we have to take a look at all of this. We have an obligation as a society. For families with an autistic child, this is extremely expensive. You've got families breaking up, mortgaging their homes. I'm tired of the jurisdictional shell game," he said.
"The bottom line is we have to put it all on the table. If we don't, how are we ever going to have a national program? People are scrambling to get treatments for their sons and daughters."
It was one day on Parliament Hill back in Sept. 2004 when Munson first encountered Andrew Kavchak with a sandwich board around his neck.
Kavchak told him his story about his autistic child and his struggles for government-funded treatment
For Munson, it was a story that resonated.
"I cried with him. As a nation, we have to take a look at it, we have an obligation as a society. We have to do this for moral and financial reasons," Munson said, explaining how the concept of the senate inquiry, Pay Now or Pay Later, came about.
"I know what this is like, these kids will get institutionalized like the Down syndrome children of the '50s and '60s," Munson said.
Kavchak took to wearing his sandwich board after his son Steve was diagnosed at the age of two, but couldn't get treatment. He was told he was on a waiting list with the recommendation he seek private treatment.
"It was devastating for us," he said, adding they spent about $40,000 the first year alone.
"I remember very clearly one day I saw Sen. Munson walk by the Centennial Flame. He was very kind and I asked him to help. To my great satisfaction he listened.
"Sen. Munson has been our angel on the Hill," Kavchak said.
The report, released earlier this year, calls for a national autism strategy, dealing with a wide variety of issues -- everything from the undue financial burden often placed on parents to treatment and research.
"No matter how a National Autism Strategy is structured, witnesses were clear that individuals with ASD must be included in the consultation and play a role within the strategy itself, that it receive adequate ongoing funding, that it span the lifetime of affected individuals and that it strive to achieve consistency across the country in terms of information dissemination, assessment, treatments and supports," the report reads.
As the title of the report suggests -- Pay Now or Pay Later: Autism Families in Crisis -- there is a high price to pay if the needs of autistic children are ignored.
"The committee fully supports the view expressed by families with autistic children and autistic individuals themselves that governments must pay now; otherwise, they will pay later. We believe that the latter is simply not an option."
Recently, the Conservative government responded to the report, but the response is not nearly good enough for either Kavchak or Munson.
The response is more a regurgitation of what the federal government now does than a sign it's willing to adopt the recommendations of the Senate report. And the government doesn't suggest it will lead the way in forming a national strategy.
While it promises more research, it falls short of what was hoped for. One example: "As identified by the Senate Committee, there is a lack of consensus and evidence on ASD issues. Accordingly, governments do not yet know enough about ASD and its treatments to implement effective and well-informed strategies that would lead to meaningful outcomes," the response, released last month, reads.
But Munson said he won't stop pushing for what he believes in.
"We have to get together in one room- -- families, scientists, researchers, politicians, and close the door. Right now, we've got our heads stuck in the sand. This is too important, it's a crisis.
"We owe it to these people ... I have found a place and I use the motivation of our son to fight for families who have children with autism."
---
HIGHLIGHTS
Recommendations from the Standing Senate Committee report entitled: Pay Now or Pay Later -- Autism Families in Crisis
- The federal government establish a comprehensive National Autism Spectrum Disorder (ASD) Strategy.
- The federal government convene a federal/provincial/territorial ministerial conference to examine innovative funding arrangements for the purpose of financing autism therapy.
- The conference identify measures of accountability in the use of federal funds for autism treatment.
- The conference also define the feasibility of introducing measures such as supports for caregivers, including respite, family training and assistance, assisted living support as well as career and vocational training.
- Health Canada , in consultation with autistic individuals and other stakeholders, implement a national public awareness campaign.
- The federal government create an Autism Research Network --- and provides substantial new funding for this -- to work collaboratively with all stakeholders to develop an agenda.
- The federal government work collaboratively with the provinces and territories to address the human resource issues including training standards and inter-provincial mobility in the field of ASD.
- The federal government, in implementing the recommendations of the Minister of Finances Expert Panel on Financial Security for Children with Severe Disabilities, ensure that autism qualifies as an eligible disability.
- The Department of Finance and the Revenue Canada Agency study the implications of income splitting for ASD families and issue a report to the Minister of Finance by June 2008.
----------------------------------------------------------------------------------------------------------
Ottawa Sun
Tuesday, December 4, 2007
An Autistic Child
Apple of his Parent's Eyes
By: Alan Roberts
The wind blew across the ski hill as I stood looking up at the gate where Dillon was lined up waiting for his turn through the course. He rocked back and fourth in the gate, bending his knees and pushing his chest forward, anxious to get going.
Finally, the starter signalled and Dillon inched out of the gate, heading down the hill toward the first turn. A crowd at the starting line was yelling encouragement. As I watched and cheered, my eyes welled up with tears. Never in a thousand years did I believe I'd see Dillon skiing, let alone going through a slalom course with a crowd of well-wishers cheering him on.
I have no illusions of Dillon making the Canadian ski team, but to our family he has already become a "Crazy Canuck."
REALIZED FEARS
Dillon is 14 and has autism. He was first diagnosed with a global development delay at the CHEO when he was three years old. Six months earlier, when Dillon's mom and I had finally found the courage to speak our fears, we decided to do a self-referral to the Child Development Clinic at CHEO. After a series of cognitive tests, the medical panel told us what we already knew deep down in our hearts, but were too afraid to even say to one another.
Something was obviously very wrong with Dillon. The doctors didn't use the word autism, perhaps for fear of giving him a label that carries with it a lot of misunderstanding. But we knew, and they knew, he presented many of the classic systems associated with autism: Little or no response to communication, not meeting any of the language milestones, lack of eye contact, constant repetitive playing with the same toy, hand flapping and banging his head on the wall.
Since that initial diagnosis in 1996, our family has been on a rollercoaster ride trying to make sense of a neurological disorder no one really understands. Dillon is completely nonverbal and requires round-the-clock care even though he has benefited from constant intervention since first being diagnosed.
We were fortunate to get Dillon into the one nursery school in Ottawa that specialized in working with children on the autism spectrum. For two years, every morning he attended Thursday's Child nursery school sponsored by Children at Risk. In the afternoons we had an applied behaviour modification specialist work with Dillon on communication, behaviour, sensory integration and socialization skills. Thankfully, both Janine and I have good jobs because we were spending about $800 to $1,000 per month on the school and these services.
As with any parents who are confronted with a major problem in their child's life, we've tried to become experts on the "A" word. Reading articles, talking to other parents, surfing the Net and attending conferences all help, although at times we wonder are we doing enough, too much, or should we try some of the new interventions?
We've also been forced to become community fundraisers, advocates, lobbyists and political activists. Going out to another evening meeting, staffing a late-night bingo, writing yet another letter to a politician, or working the phone lines always seem that much harder to do after being up all night with a frustrated child who can't sleep, wants to run all over the house, but can't tell you why.
MANY CHALLENGES
All parents, special needs children or not, will usually agree every day brings another challenge. Most also agree many days also bring another milestone, celebration or special accomplishment. Thankfully, our life with Dillon is no different.
Last March, Dillon's mother Janine, brother Jeremy, Dillon and I all went on our first March Break holiday together. Before, when we'd gone away, Dillon had usually stayed behind because change is just too stressful for him. Last year, however, we opted to rent a ski chalet knowing full well that although the strange bed and surroundings might throw him a bit, skiing all day would certainly be something he'd really enjoy. We were right.
Many people have said over the years, "We don't know how you and Janine do it." The answer is really quite simple. We couldn't not do it because then we would miss out on seeing Dillon ski down the hill and hearing the crowd cheering him on.
After all, he's our Crazy Canuck.
-------------------------------------------------------------------------
Also, good coverage in the Globe on the Stats Can release of numbers of people with disabilities in Canada which mentions that autism is responsible for the increase in disability numbers in children. Warrants some letter writing to their editor too: http://www.theglobeandmail.com/feedback/?form=lettersToTheEditorForm&articleHeadline=Disabilities+no+longer+hidden
Globe
Disabilities no longer hidden
ANDRÉ PICARD
PUBLIC HEALTH REPORTER
December 4, 2007
More than 750,000 Canadians have joined the ranks of the disabled in the past five years, according to newly released data from Statistics Canada.
There are now an estimated 4.4 million people - one in seven Canadians - reporting a physical, psychiatric or developmental disability, and every indication that those numbers will continue to grow.
The increase is being attributed to three principal factors: the aging of the population, the willingness of people to disclose disabilities due to lessening stigma, and better data collection.
"What these numbers say to us is that disability is an issue for all Canadians," Laurie Beachell, national co-ordinator of the Council of Canadians with Disabilities, said in an interview.
"Some 14.3 per cent identify as having a disability, but they all have family and friends, so we all know people with disabilities; it's not hidden any more," he said.
Mr. Beachell said the most important aspect of the report is what is unwritten: "The numbers are growing, but the unmet need for services is also growing."
Max Beck, chief executive officer of Easter Seals Canada, made similar comments.
"It's distressing that the rates of disability are still climbing among children and youth," he said.
"But even more disturbing is they're not getting the support they need: They aren't getting mobility supports like wheelchairs; jobs are still hard to come by; and communities aren't accessible enough," he said.
Mr. Beck said the good news is that stigma is disappearing, that people with disabilities, and children in particular, "aren't hidden away any more, as once happened."
According to Statistics Canada, 16.5 per cent of adults and 3.7 per cent of children suffer from a disability.
People with disabilities were defined as those reporting difficulties with daily living activities, or who indicated that a physical or mental condition or health problem reduced the kind or amount of activities they could do.
About 40 per cent of those with disabilities reported severe limitations, while 25 per cent said they had moderate limitations and 35 per cent mild limitations.
The biggest increase was among people reporting learning disabilities (such as trouble reading), while the number of people with developmental disabilities (such as Down syndrome) has fallen slightly.
In children, disability is related mainly to chronic conditions such as asthma and autism. For working-age Canadians, chronic pain is the most common form of disability, while for seniors it is mobility limitations.
Anne Martin-Matthews, scientific director of the Canadian Institutes of Health Research's Institute of Aging , said there are a lot of policy implications that flow from the numbers.
"When a significant number of people in society have disabilities, there are a lot of practical implications - everything from the duration of crosswalk lights to the way we build homes and cities," she said.
"We have the data but we've got a long way to go in terms of awareness about what we have to do as a result of that data."
She also stressed that while there are significant numbers of seniors with disabilities, Canadians need to keep the numbers in context.
"The vast majority of seniors do not have a disability and those with limitations can still have fulfilling lives. We just need policies that make that easier," Dr. Martin-Matthews said.
According to Statistics Canada, disability rates have increased in every province over the past five years. However, there remain substantial regional variations in disability rates, from a low of 10.4 per cent in Quebec to a high of 20 per cent in Nova Scotia .
The Atlantic provinces have the oldest populations in Canada , which explains part but not all of the variation.
******
List Mate
Autism
Fighting for funding
SUSAN SHERRING
Sen. Jim Munson knows all too well about the feelings of alienation when your child doesn't fit the mold. As the father of a boy born with Down syndrome, Munson says he understands the frustration felt by parents of children diagnosed with autism. Munson's son, Timothy, who died before reaching his first birthday almost 40 years ago, is part of the impetus for the former national television reporter, now senator, to push for the Senate Report on Autism.
Munson is tired of the turf wars over who is responsible for funding of treatment.
"As a nation, we have to take a look at all of this. We have an obligation as a society. For families with an autistic child, this is extremely expensive. You've got families breaking up, mortgaging their homes. I'm tired of the jurisdictional shell game," he said.
"The bottom line is we have to put it all on the table. If we don't, how are we ever going to have a national program? People are scrambling to get treatments for their sons and daughters."
It was one day on Parliament Hill back in Sept. 2004 when Munson first encountered Andrew Kavchak with a sandwich board around his neck.
Kavchak told him his story about his autistic child and his struggles for government-funded treatment For Munson, it was a story that resonated.
"I cried with him. As a nation, we have to take a look at it, we have an obligation as a society. We have to do this for moral and financial reasons," Munson said, explaining how the concept of the senate inquiry, Pay Now or Pay Later, came about.
"I know what this is like, these kids will get institutionalized like the Down syndrome children of the '50s and '60s," Munson said.
Kavchak took to wearing his sandwich board after his son Steve was diagnosed at the age of two, but couldn't get treatment. He was told he was on a waiting list with the recommendation he seek private treatment.
"It was devastating for us," he said, adding they spent about $40,000 the first year alone.
"I remember very clearly one day I saw Sen. Munson walk by the Centennial Flame. He was very kind and I asked him to help. To my great satisfaction he listened.
"Sen. Munson has been our angel on the Hill," Kavchak said.
The report, released earlier this year, calls for a national autism strategy, dealing with a wide variety of issues -- everything from the undue financial burden often placed on parents to treatment and research.
"No matter how a National Autism Strategy is structured, witnesses were clear that individuals with ASD must be included in the consultation and play a role within the strategy itself, that it receive adequate ongoing funding, that it span the lifetime of affected individuals and that it strive to achieve consistency across the country in terms of information dissemination, assessment, treatments and supports," the report reads.
As the title of the report suggests -- Pay Now or Pay Later: Autism Families in Crisis -- there is a high price to pay if the needs of autistic children are ignored.
"The committee fully supports the view expressed by families with autistic children and autistic individuals themselves that governments must pay now; otherwise, they will pay later. We believe that the latter is simply not an option."
Recently, the Conservative government responded to the report, but the response is not nearly good enough for either Kavchak or Munson.
The response is more a regurgitation of what the federal government now does than a sign it's willing to adopt the recommendations of the Senate report. And the government doesn't suggest it will lead the way in forming a national strategy.
While it promises more research, it falls short of what was hoped for. One example: "As identified by the Senate Committee, there is a lack of consensus and evidence on ASD issues. Accordingly, governments do not yet know enough about ASD and its treatments to implement effective and well-informed strategies that would lead to meaningful outcomes," the response, released last month, reads.
But Munson said he won't stop pushing for what he believes in.
"We have to get together in one room- -- families, scientists, researchers, politicians, and close the door. Right now, we've got our heads stuck in the sand. This is too important, it's a crisis.
"We owe it to these people ... I have found a place and I use the motivation of our son to fight for families who have children with autism."
---
HIGHLIGHTS
Recommendations from the Standing Senate Committee report entitled: Pay Now or Pay Later -- Autism Families in Crisis
- The federal government establish a comprehensive National Autism Spectrum Disorder (ASD) Strategy.
- The federal government convene a federal/provincial/territorial ministerial conference to examine innovative funding arrangements for the purpose of financing autism therapy.
- The conference identify measures of accountability in the use of federal funds for autism treatment.
- The conference also define the feasibility of introducing measures such as supports for caregivers, including respite, family training and assistance, assisted living support as well as career and vocational training.
- Health Canada , in consultation with autistic individuals and other stakeholders, implement a national public awareness campaign.
- The federal government create an Autism Research Network --- and provides substantial new funding for this -- to work collaboratively with all stakeholders to develop an agenda.
- The federal government work collaboratively with the provinces and territories to address the human resource issues including training standards and inter-provincial mobility in the field of ASD.
- The federal government, in implementing the recommendations of the Minister of Finances Expert Panel on Financial Security for Children with Severe Disabilities, ensure that autism qualifies as an eligible disability.
- The Department of Finance and the Revenue Canada Agency study the implications of income splitting for ASD families and issue a report to the Minister of Finance by June 2008.
ILLUS: file photo by Tom Hanson Jim Munson is pushing for the Senate Report on Autism.
From a listmate
Editor comment in brackets
Toronto Sun
Tuesday, December 4, 2007
Province is on Target
Re "Premier needs to find his target" (Editorial, Nov. 30): Since taking office, we have worked closely with our education partners to make meaningful changes to the funding formula every single year. Over the past four years, we have invested an additional $3.7 billion that allowed us to close the teacher salary gap, introduce new grants and target other items boards have told us about. We know one size doesn't fit all. We've addressed needs that are more specific to urban areas with support such as additional ESL funding. We've also moved away from strictly per-pupil funding, and in doing so, we've provided boards with much more flexibility, as they have requested. And while we've been making improvements to the formula every year, we're also going to do an evaluation of the changes made to the funding formula by 2010. We will continue to make improvements to ensure that Ontario students reach their full potential.
Kathleen Wynne
Minister of Education
(Good to see class hasn't been dismissed)
From a listmate
Project “God Stepped Inâ€
MEMO
To:Â Parents of Special Needs Children
From:Â Kelli Ann Davis and Cathy Jameson
Date:Â 27 November 2007
Subject:Â Request for stories of Faith, Hope and Miracles
Â
Have you been moved by a miraculous event in your life or the life of your special needs child? Have you experienced not just a medical breakthrough but a moment inspired by Divine Intervention?  If so, would you be willing to share your story with others?
Â
We are searching for short stories for a yet untitled book which focuses on the miraculous movement of God in the lives of families with special needs children. We've been in contact with several Christian authors (one has written several bestsellers) who have offered their help and guidance as we move forward through this process. Â
Â
Tell us how God stepped into your life. Was it through a dream? Was it a direct answer to a prayer? Or was it possibly a unique set of circumstances that cannot be "explained" in logical terms?Â
Â
If you have a story to tell, please include your child's age and diagnosis, the event that changed your life and submit it to us in the form of a short story (no longer than 2 pages). Please remember to include your contact information so that we may reach you in the event that your story is chosen for the book.Â
Â
We believe that God is real - He is here - and He cares. And we believe that the stories in this book will provide great comfort to the parents who read it.Â
Â
God has a special place in His heart for our children - and for the parents who raise them.Â
Â
Remember that ".you do not despise one of these little ones, for I say to you that their angels in Heaven always look upon the face of my heavenly Father."Â Matthew 18:10Â Â
Â
With gratitude,
Â
Kelli Ann Davis - kellianndavis@hotmail.com
Cathy Jameson - catjam34@yahoo.com
Â
Please, circulate far and wide.
From a listmate
he Autism Holiday Challenge
My child suffers from sensory overload during the holiday season. I suffer from emotional overload. We have a holiday bond. We love it, we hate it, we ….. (Continue reading)
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From a listmate
Autism
Boy inside the man
By SUSAN SHERRING
With absolute precision, Ryan Hawley takes his bright-green truck and motors it around the floor of his family's dining room, around the chairs and into the living room.
It's child's play.
But Ryan Hawley isn't a child.
He's 30 years old and he's autistic.
Standing at 5-foot-10, with a thick, dark moustache, he looks like any other man his age -- if it weren't for his playing.
"He can do that for hours," says his mother Rose.
While autism -- and the demands for assessment and treatment have grabbed the headlines in recent months -- little attention has been paid to the needs of autistic adults.
Their futures are bleak.
"We've given up any hope that Ryan will ever get a job," says Rose. "No one wants to take the liability. It's hard."
After years of fighting the system, Rose seems to accept the establishment she began battling almost three decades ago has been slow to keep pace with the problem.
For 10 years, Ryan had a job -- routine cleanup work at the cancer clinic at the Ottawa General Hospital .
For other adults his age, the work would have been considered incredibly mundane. For Ryan, it provided outside stiumulation and a daily routine that was good for him.
And it was good for his family who had a break during the day.
He was picked up by Para-Transpo, and dropped off at the hospital and brought home mid-afternoon. He wasn't paid for the work, but a hospital employee who served as a job coach, was reimbursed.
It seemed ideal. Then the call came one day that the following day would be his last.
"It was horrendous for us," Rose said, adding they never did find out exactly why the work ended.
There have been subtle changes in Ryan's behaviour since losing his job, she said. He has developed slight tics and he's rocking more.
Although her son is 30, Rose still can't contemplate the future. Trying to figure out who will take care of her youngest son when she and her husband are gone is something she still can't get her head around.
"I've decided I just can't go," she jokes.
With a strong family network, the Hawleys have never relied on respite care or group homes to get away for a break.
And Rose won't put him in a home at this stage of his life, believing it would turn his world upside down.
Daughter Melissa and her husband James say they'll take care of Ryan but Rose is reticent about leaving her daughter with the burden of caring for her brother.
"She has her own life, too," she says. "It's one thing for her to take him for a weekend, even a week, but ..."
It's the only time during the interview that Rose lets her guard down, when her eyes begin to well up with tears.
Up until he was about 18 months old, Ryan was like any other baby. He crawled and babbled the appropriate words, but that soon changed.
At the age of two, doctors with the Children's Hospital of Eastern Ontario (CHEO) gave them the news.
"They told us he was severely retarded, to put him in an institution and forget about him," Rose said.
It wasn't until a teacher from England told her she thought Ryan was autistic that they were able to get him the help he needed.
Unhappy with what Ottawa had to offer autistic children three decades ago, Ryan's dad Richard got a job transfer to London , Ont. The Hawleys moved their four children to a new city to get Ryan into a program.
"It was wonderful, he progressed so much," Rose said.
The temper tantrums ended, he stopped throwing furniture. But his speech never developed.
A typical day for Ryan is to wake up at 7 a.m., go downstairs, and make breakfast -- toast or cold cereal.
After his morning meal, he puts away the dishes, cleans up and goes for a shower and shave.
Throughout the day he'll spend hours in his room listening to music, playing computer games, watching movies or the TV.
His walls and shelves are crammed with stuffed toys, some of his favourite characters -- mostly from Disney movies.
Lunch is much the same as breakfast. He methodically gets himself something to eat -- a casserole that he heats in the microwave, covering it with ketchup.
As he eats, he rocks slightly in his chair, eating with his fork, licking the knife clean. Dessert is pie covered with whipped cream.
In the summer, he loves to go camping, he likes swimming in the family pool and golfs. In the winter, he goes skiing with his sister's family.
Living with an autistic child means a loss of freedom.
Once Rose was locked out of the house and Ryan wouldn't let her in. She can laugh about it now.
"You have to have a very strong marriage, so many don't make it," Rose said.
"You've got to keep your sense of humour; if you don't it can be depressing."
From a listmate
Scientists finger enzyme as autism culprit
JULIE STEENHUYSEN
Reuters
December 5, 2007 at 10:48 PM EST
CHICAGO — Autism and other brain disorders may be the result of a missing protein important for building communication networks in the brain, U.S. researchers said on Wednesday.
Researchers at the Massachusetts Institute of Technology found that an enzyme called Cdk5 that instructs a synapse-building protein called CASK may be going awry, causing a breakdown in the formation of synapses.
Synapses allow information from one neuron to pass to another and are essential for the ability to learn and remember.
"If there is a reduction in the number of synapses, that is going to profoundly affect the function of the nervous system," said Li-Huei Tsai, an MIT professor and Howard Hughes Medical Institute researcher, whose study appears in the journal Neuron.
Cdk5 is a kinase, an enzyme that changes proteins. Its primary task is to help new neurons form and migrate to their correct positions during brain development. But Dr. Tsai's study suggests it may also play a role in the formation of synapses.
The research offers a possible explanation for the underlying molecular causes of autism, she said in a telephone interview.
Dr. Tsai and colleagues genetically modified mice to either lack Cdk5 entirely or to have a very active form of it. She and colleagues then removed some of the cells and analyzed their growth in a petri dish.
"We show that if Cdk5 fails to facilitate CASK, then there is a very profound defect in synapse formation," Dr. Tsai said.
It affects the formation of synapses, reducing the number formed and impairing their function, she said.
People with autism spectrum disorders suffer in varying degrees from limited social interactions, lack of verbal and non-verbal communication and other abilities.
The exact cause of autism is unknown.
"The most accepted hypothesis for autism is that there is a defect in synapse formation," Dr. Tsai said, adding that mutations of genes directly connected to CASK have already been identified as being associated with autism.
Mutations of CASK and Cdk5 are also identified in certain patients with mental retardation.
"I think this study strongly suggests this pathway involving Cdk5 ... is intimately involved (in autism)," she said.
From a listmate
Thursday 6th of December 2007
Autistic teen uses sign language for bar mitzvah
By LAURA STRICKER, CJN Intern
Thursday, 06 December 2007
TORONTO — When Ariella, Josh and Zach Sone were born almost three months prematurely, they each weighed less than two pounds. Now, 13 years later, the triplets have just celebrated their bar and bat mitzvahs.
While Ariella and Josh chanted their portions from the bimah, Zach, who is deaf and autistic, did his bar mitzvah portion in sign language, the first time this was done at the Beth Emeth Bais Yehuda Synagogue. The service was a success. Zack’s father, Evan Sone, referred to it as “the most moving service I have ever attended.”
However, getting Zach ready for the Nov. 11 service proved to be quite a challenge. It took six months to find someone to translate his portion into sign language.
“I contacted everyone I could think of,” said his mother, Marla Sone. “It seemed to take forever. I was starting to freak out.”
Finally, she got in touch with Rabbi Elyse Goldstein, who knew someone that could do the translation. From there, things went a lot more smoothly. Once the portion had been translated, it took Zach only a few weeks to learn it.
“The rabbi was shocked, because he didn’t think it was going to work,” Marla said. “I don’t think they really understood what he [Zach] could and couldn’t do… He learned it in no time flat.
“He’s been in therapy for a long time, and we wanted to show everybody what he could do.”
Zach is very smart, Marla said, adding that he taught himself to read by the time he was three.
“He started memorizing the backs of video covers and typing them out,” she said. “He’s very good on the computer.
“His spelling is impeccable. When we would tell him he needed to get a needle, he would spell injection. When he was in the hospital, I showed him an IV and he spelled intravenous.”
“Intellectually, he is very clever,” Evan added.
Ariella, Josh and Zach all get along well, Marla and Evan said.
“Because they were all born together, they don’t know life a different way,” Marla said. “They’re very good with [Zach]; they help all the time. I’m lucky… They understand him, because they are triplets.”
Now that the bar and bat mitzvahs, which had almost 300 guests, are over, the Sones are turning their attention back to finding a new educational assistant (EA) for Zach.
“Finding an EA for him will be difficult,” Marla said. “His current one is leaving after five years. I don’t even know where we’re going to find a new person.”
The Sone family is very close, Evan and Marla say, and they do everything together.
“We don’t keep [Zach] hidden,” Marla said. “I want people to meet him. We have three children and we travel as a pack.”
“He’s going to be the best he can be, and that’s all we ask for,” Evan added.
From a listmate
Good day!
We have added a few new products to our website that would make great stocking stuffers.
Check out the new Autism Ribbon Jibbitz! Also, the Enamel Charm is back by popular demand! Our new mood magnets are now available in French.
We also have a number of other great gift ideas (baseball caps, bags, wristbands etc).
Also check our website in the New Year for exciting new items like umbrellas, golf shirts and sports bottles.
Thank you to everyone who purchased items in October. We were extremely pleased to be able to donate 10% of all sales to the trust fund for Miles Dye.
December will be that last month that we will be offering the buy 2 get 1 free special on magnets and wristbands.
Order soon to ensure delivery in time for Christmas.
Also, if you happen to be going to the ABA International conference in Atlanta , Georgia drop by and see us, we will be exhibiting!
Hoping your holidays are happy and safe.
From our family to yours,
Andrew & Cynthia
www.autismawareness.ca
End of mailing.
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