Friday, June 29, 2007

Autism and ABA Abuse of Autistic Children - A Case Study, Part 2







Above, top 3, some of the horrible things - "readin, ritin, rithmatic" - Conor was forced to endure through ABA abuse.

Bottom, Conor, tricked by devious ABA techniques into thinking he actually enjoys ABA, has pulled up a chair and waits in anticipation for the arrival of his ABA therapist.

Thursday, June 28, 2007

Autism and ABA Abuse of Autistic Children - A Case Study, Part 1

Conor, 1999, Age 3 1/2 - before being exposed to ABA intervention





Conor, 2006, Age 10 1/2 - after several years of ABA intervention





An oft heard criticism of ABA is that ABA robs an autistic child of his/her true nature or identity, depriving them of an essential part of their personality, and thus constituting a form of abuse. In this case study, the top picture above, 1999, before Conor was exposed to ABA intervention, shows a happy smiling boy. The bottom picture above, however, 2006, after several years of ABA intervention shows a .... well .... uh .... a happy smiling boy.

Revving Up the Autism Knowledge Revolution

We are living in a revolutionary era. The hardware era is giving away to the software age, and as a result, the economic and social landscape of the world is undergoing seismic changes.

The Knowledge Revolution, Noel M. Tichy, Ph.D., 2002


On March 18 2007 in "The Autism Knowledge Revolution" I commented on the revolution in autism knowledge currently taking place. As impressive as the Autism Knowledge Revolution, the "AKR" appeared just 3 short months ago it appears that the AKR is proceeding at an even more explosive pace then I had thought at that time. Since that post the world has been made aware of the protein/neuroligin study by Davide Comoletti1, Alexander Grishaev, Andrew E. Whitten, Igor Tsigelny, Palmer Taylor and Jill Trewhella published in a recent issues of Structure in which the authors "developed structural models that delineate the spatial arrangements of different neuroligin domains and their partnering molecules. As mutations of neurexin and neuroligin genes appear to be linked to autism, these models provide a structural framework for understanding altered recognition by these proteins in neurodevelopmental disorders."

Just this week Hayashi et al reported in their study that "FXS is tied to a mutated X chromosome gene called the fragile X mental retardation 1 ( FMR1) gene. When this gene is mutated, it can cause mild learning disabilities to severe autism.

"Our study suggests that inhibiting a certain enzyme in the brain could be an effective therapy for countering the debilitating symptoms of FXS in children, and possibly in autistic kids as well". One of the study's authors, Tonegawara, even offered the possibility of reversal of symptoms after the symptoms are pronounced. "Notably, due to an elegant genetic manipulation of method employed by the Picower Institute researchers, PAK inhibition in the FXS mice did not take place until a few weeks after appearance of disease symptoms. This implies that future treatment may still be effective even after symptoms are already pronounced,"

At present there is no cure for autism. Nor is there a biomedical treatment for reversing the symptoms of autism. The Autism Knowledge Revolution, and the breathtaking pace at which it is proceeding, is increasingly offering hope that cures and treatments for autism may not be as far off as once thought. As a father of an autistic 11 year old boy with Autism Disorder with pronounced developmental delays I hope that some of that knowledge will be converted into treatments which will help my son with his serious autism deficits. But if that does not happen, I still hope that other autistic children, will some day soon benefit directly from the Autism Knowledge Revolution.

Tuesday, June 26, 2007

Autism and Neuroscience - Inhibition of p21-activated kinase rescues symptoms of fragile X syndrome in mice




What follows is the open access summary of the report pointing to a possible therapy for treating autism as submitted by one of the report's lead authors Susumu Tonegawa. The report itself is also open access and can be downloaded by clicking a link at the PNAS site:

http://www.pnas.org/cgi/reprint/0705003104v1?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=
&fulltext=Susumu+Tonegawa&searchid=1&FIRSTINDEX=0&sortspec=date&resourcetype=HWCIT


Inhibition of p21-activated kinase rescues symptoms of fragile X syndrome in mice

( cortical long-term potentiation | spine morphology | trace fear conditioning | autism )
Mansuo L. Hayashi *{dagger}, B. S. Shankaranarayana Rao {ddagger}, Jin-Soo Seo {sect}, Han-Saem Choi {sect}, Bridget M. Dolan *, Se-Young Choi {sect}, Sumantra Chattarji ¶, and Susumu Tonegawa *||

*The Picower Institute for Learning and Memory, Howard Hughes Medical Institute, RIKEN-Massachusetts Institute of Technology Neuroscience Research Center, and Departments of Biology and Brain and Cognitive Sciences, Massachusetts Institute of Technology, Cambridge, MA 02139; {ddagger}Department of Neurophysiology, National Institute of Mental Health and Neurosciences, Bangalore 560029, India; {sect}Department of Physiology, College of Dentistry, Seoul National University, Seoul 110-749 Korea; and ¶National Center for Biological Sciences, Tata Institute of Fundamental Research, Bangalore 560065, India

Contributed by Susumu Tonegawa, May 29, 2007 (sent for review May 21, 2007)

Fragile X syndrome (FXS), the most commonly inherited form of mental retardation and autism, is caused by transcriptional silencing of the fragile X mental retardation 1 (FMR1) gene and consequent loss of the fragile X mental retardation protein. Despite growing evidence suggesting a role of specific receptors and biochemical pathways in FXS pathogenesis, an effective therapeutic method has not been developed. Here, we report that abnormalities in FMR1 knockout (KO) mice, an animal model of FXS, are ameliorated, at least partially, at both cellular and behavioral levels, by an inhibition of the catalytic activity of p21-activated kinase (PAK), a kinase known to play a critical role in actin polymerization and dendritic spine morphogenesis. Greater spine density and elongated spines in the cortex, morphological synaptic abnormalities commonly observed in FXS, are at least partially restored by postnatal expression of a dominant negative (dn) PAK transgene in the forebrain. Likewise, the deficit in cortical long-term potentiation observed in FMR1 KO mice is fully restored by the dnPAK transgene. Several behavioral abnormalities associated with FMR1 KO mice, including those in locomotor activity, stereotypy, anxiety, and trace fear conditioning are also ameliorated, partially or fully, by the dnPAK transgene. Finally, we demonstrate a direct interaction between PAK and fragile X mental retardation protein in vitro. Overall, our results demonstrate the genetic rescue of phenotypes in a FXS mouse model and suggest that the PAK signaling pathway, including the catalytic activity of PAK, is a novel intervention site for development of an FXS and autism therapy.

Author contributions: M.L.H., S.-Y.C., S.C., and S.T. designed research; M.L.H., B.S.S.R., J.-S.S., H.-S.C., and B.M.D. performed research; M.L.H., B.S.S.R., and S.-Y.C. analyzed data; and M.L.H., B.M.D., S.C., and S.T. wrote the paper.

The authors declare no conflict of interest.

Freely available online through the PNAS open access option.

{dagger}Present address: Department of Neuroscience Drug Discovery, Merck Research Laboratories, Boston, MA 02115.

||To whom correspondence should be addressed.
Susumu Tonegawa, E-mail: tonegawa@mit.edu

www.pnas.org/cgi/doi/10.1073/pnas.0705003104

Monday, June 25, 2007

Autism Research: Scientists Reverse Symptoms of Autism in Mice












This report appears to hold great promise that someday some of the more severe cognitive deficits present in some instances of autism may be reversible. This news will undoubtedly be greeted with skepticism and even cynicism. Yes, the studies must be subjected to the usual rigours of scientific study and mice are not people etc. But this study is one more example of the explosion in research taking place now into the nature, causes and treatments for autism. Research such as this holds out hope for the future.



Scientists Reverse Symptoms of Autism in Mice

06.25.07, 12:00 AM ET

MONDAY, June 25 (HealthDay News) -- Scientists may have uncovered a way to reverse symptoms of mental retardation and autism in mice.

Researchers from the Picower Institute for Learning and Memory at Massachusetts Institute of Technology (MIT) genetically manipulated the mice to model Fragile X Syndrome (FXS), which is the leading inherited cause of mental retardation and the most common genetic cause of autism.

FXS is tied to a mutated X chromosome gene called the fragile X mental retardation 1 ( FMR1) gene. When this gene is mutated, it can cause mild learning disabilities to severe autism.

"Our study suggests that inhibiting a certain enzyme in the brain could be an effective therapy for countering the debilitating symptoms of FXS in children, and possibly in autistic kids as well,"
study co-author Mansuo L. Hayashi, a former Picower Institute postdoctoral fellow currently at Merck Research Laboratories in Boston, said in a prepared statement.

The enzyme that was inhibited in this study is called p21-activated kinase, or PAK, and it affects the number, size and shape of connections between neurons and the brain.

When PAK's activity was halted, the brain abnormalities in the FXS mice were reversed.

"Strikingly, PAK inhibition also restored electrical communication between neurons in the brains of the FXS mice, correcting their behavioral abnormalities in the process," co-author Susumu Tonegawa, 1987 Nobel laureate and Picower Professor of Biology and Neuroscience, said in a prepared statement.

Tonegawa said that there are known chemical compounds that can inhibit the activity of PAK, which is something that may be useful in developing drugs to treat FXS.

The FXS mice showed abnormalities similar to those in FXS patients, including hyperactivity, purposelessness, repetitive movements, attention deficits, and difficulty with learning and memory.

When the activity of PAK was inhibited, these abnormalities were partially or fully ameliorated.

"Notably, due to an elegant genetic manipulation of method employed by the Picower Institute researchers, PAK inhibition in the FXS mice did not take place until a few weeks after appearance of disease symptoms. This implies that future treatment may still be effective even after symptoms are already pronounced," Tonegawa said.

The findings were reported in the June 25-29 online early edition of the Proceedings of the National Academy of Sciences.


http://www.forbes.com/forbeslife/health/feeds/hscout/2007/06/25/hscout605865.html

Autism Health Insurance - Texas Governor Perry Signs Autism Insurance BIll



"Great things can be achieved, with early intervention, like with this one, He's making miraculous progress,"

- Suvi Aika, Mother of 5 year old diagnosed with autism at age 2

It is very enouraging to see the progress toward health insurance coverage for autism being made in the United States. Maybe if enough US states provide coverage Canadian Prime Minister Stephen Harper will be persuaded to do more than provide a lack lustre one page web site to help the cause of autistic children in Canada.

Autism insurance bill gets Governor's approval

06:29 PM CDT on Friday, June 22, 2007

By ELISE HU
KVUE News

Texas will soon require health insurance companies to provide coverage for children with Autism, under a bill signed by the governor last week.


http://www.kvue.com/news/local/stories/062207kvuechildautism-jj.34b9fb0.html

Saturday, June 23, 2007

Stephen Harper's Autism Report Card



Click to enlarge


Just before the House of Common's school year ended and the students scattered for their summer vacation report cards were handed out. Stephen Harper did not do well in his National Autism Strategy course and will have to repeat the course. Summer school is highly recommended.

Friday, June 22, 2007

Autism & Education - Conor's Last Day at Nashwaaksis Memorial School
















Click to enlarge

Randy the crossing guard, the face of Nashwaaksis Memorial School
Conor and Mom walk to school
Conor rings the bell
Conor's computer corner



There are many challenges to deal with in advocating for the best possible situation for a child with Autism Disorder in the school system. At times the challenge can include confrontation with educators, particularly when the discussions are taking place higher up in the public service hierarchy. With Conor's education though the school he has attended from K-5 has been filled with wonderful people teachers, resource teachers, principals, aides, janitors, office personnel and crossing guards, all of whom contributed to a safe, nurturing and enjoyable educational experience for Conor over the past 6 years. Today was Conor's last day at Nashwaaksis Memorial School. It was, for Dad, a difficult moment knowing I would not be bringing him back to this school again or picking him up there at the end of the day. I have never been shy about voicing my opinion. This time I am very happy to say well done everyone at Memorial School. And thank you.

Thursday, June 21, 2007

UNB CEL Autism Intervention Training Graduation 2007



Left to Right (Front)

Lila Barry, President ASNB

Nicole Jenkins, AITP Award of Excellence, Clinical Supervisor, English

Andrea Rogers, AITP Award of Excellence, Autism Support Worker, English

Francine Melanson, AITP Award of Excellence, Autism Support Worker, French

Denise Cormier, AITP Award of Excellence, Clinical Supervisor, French

Back Row

Harold L Doherty, ASNB Director, Fredericton



Yesterday I attended the graduation ceremonies for several groups of students who were graduating from programs offered by the University of New Brunswick College of Extended Learning, including graduates of the Autism Intervention Training program. I had the privilege of addressing the graduates of the AIT program and others present and, with ASNB President Lila Barry, of handing out awards of excellence. It was both an uplifting, and a humbling, experience to be able to participate in this important event for people who contribute so much to bettering the lives of autistic children in New Brunswick. I commented yesterday on the quality and integrity of the UNB CEL Autism Intervention Training Program. It is a program that has helped put New Brunswick ahead of many other state and provincial jurisdictions in North America when it comes to actually helping children with autism.

The graduates themselves though deserve the ultimate praise, appreciation and respect. As a parent I did not choose to become involved with autism. Autism chose my son, and in doing so, chose me. For the fine people who graduated yesterday from the UNB CEL AIT program though it is a different story. They chose to be involved. They chose a career helping children with autism - including my son, Conor.

To the graduates of the UNB CEL Autism Intervention Training Program I say again THANK YOU.

Autism & ABA in Ireland - "It's Like A Cloud Has Been Lifted"





“It's like a cloud has been lifted. The programme of ABA is tailored to Robyn's needs. She is walking a little now. She still doesn't talk, but she communicates through pictures. She shows us what she wants by pointing to photos of food or toys. Robyn now shows affection too. She connects with us, and has started kissing us. That is real progress.”

- Trevor Dagg, Independent, June 20 2007

Autism and ABA. The story is the same whether it is from Australia, Canada, the US, the UK, or Ireland. Spotty services. Fierce government resistance to helping autistic children and adults. Educators, who are not educated about autism and the learning methods appropriate for autistic children. Ignorance of ABA and its effectiveness in treating and educating autistic children. The story from the Independent (Ireland) which follow summarizes the spotty situation in Ireland but also shows the success that can be realized through ABA.


"Despite a lack of state help, many childhood stories of autism are of success. With the right support children can learn to interact and communicate and grow, something their parents feared they may never do

AUTISM has been in the news lately. The government fought the parents of six-year-old Sean O Cuanacháin in the High Court, arguing that they were not obliged to provide Applied Behavioural Analysis (ABA) for Sean.

The parents lost their case.

There are between 1,200 and 2,000 autism sufferers in Ireland, according to the Irish Society For Autism, and the number is increasing all the time.

“Research in the US has shown that autism levels have risen, from four cases in every 10,000 children to an alarming 30 to 60 per 10,000 children,” says Kathy Sinnott. “That would officially classify it as an epidemic.”

Autism, though, is difficult to diagnose. It's a complex condition covering a huge spectrum of behviours. Sufferers seem to be in a world of their own.

They do not interact well, they don't play with others and they have problems with speech.

People with autism fear change, and may have no sense of danger. They hate p hysical contact and they resist learning.

Early intervention for autism is vital – and therein lies the problem, because in some areas of Ireland, services are virtually non-existent.

“Children with autism need special education, as well as medical and dietary help,” says Kathy Sinnott.

Robyn Dagg, now four-and-a-half, was a normal baby who met all her milestones. But when she was 18 months, her parents, Tre vor and Julie, began to worry that Robyn was neither talking nor walking.

They took her to the Central Remedial Clinic in Clontarf, which ran a series of tests. Autism was suspected. When the couple took Robyn, then aged two, to Professor Fitzgerald, a renowned psychologist, he confirmed their worst fears.

“He said Robyn was on the autistic sphere and he gave us the report we needed to seek HSE funding,” says Trevor. “We were obviously devastated. We were trying to understand what we were dealing with. We needed someone to put their arm round our shoulders and say, ‘everything is going to be all right.'

“But we met with mass confusion. We didn't know where to go or who to talk to. We wanted a local service, and we had to do a lot of ringing around. Our lives were turned upside down.

“At two-and-a-half, Robyn had no communication at all. She was totally frustrated, and would be upset and screaming a lot of the time. Our son, Harry, was born around that time. We were worried if he would be OK.”

In September 2005, Robyn was accepted at St Catherine's, in Newcastle, Co Wicklow. She began a part-time programme at Barnacoyle, the pre-school for autism. Last September she was accepted on to the full-time programme, attending from 9am until 2.30pm each weekday.

“It's like a cloud has been lifted,” says Trevor. “The programme of ABA is tailored to Robyn's needs. She is walking a little now. She still doesn't talk, but she communicates through pictures. She shows us what she wants by pointing to photos of food or toys.

“Robyn now shows affection too. She connects with us, and has started kissing us. That is real progress.”

Barnacoyle, though, is the school offering ABA that was featured in the recent court case. The government, while happy to fund the 24 preschool age children, won't sanction them once they reach school age.

Yet many children with autism are not ready, at five, to move to mainstream school. According to Harry Cullen, acting CEO of St Catherine's, there are currently nine children at the school who do not receive H S E funding.

“And next September there will be another five,” says Cullen.

When 22-year-old Patrick Doyle from Knocknacarra, Co Galway, was diagnosed with autism, services were almost non-existent. Patrick has never received appropriate education and his parents, struggling to cope with his antisocial behaviour, have had no quality of life for years now.

Members of the Parents & Siblings Alliance, they have been lobbying the government to no avail.

“Patrick is in residential care for part of the time,” says his father, Gerry, “but they are short of staff there and he doesn't have any of the stimulating and physical activities that he so badly needs. He can be aggressive. We have no life.”

Mary and Eamon Bennett live in Tarmonbarry, Co Roscommon. It's one of the best areas for services and that's just as well because three of their four sons have autism.

“When we found out that Michael, now 15, had autism it was a huge shock,” says Mary. “Little was known about it back then. When the younger two, Eamon, now 12, and Peter, nine, were diagnosed with it too, it was unbelievable. thought, ‘was one not enough?’ ”

Michael is the most severe. He has no speech, and since having an epileptic fit last year, he is prone to rages.

“Michael and Eamon go to a special school in Castlerea. The staff there are brilliant. Eamon is doing really well. He is academically bright and is brilliant on the computer.”

As for Peter, thanks to early intervention he attends a national school and is doing really well.

Michael, Mary feels, will always need to go to a special centre. “He has a lot of behavioural problems but there is a good centre in Strokestown. He will be able to go there for activities during the day and come home at night. There are residential facilities there too.

“I can see Eamon working in an office, doing accounts perhaps, and I think Peter might be in a trade.”

Mary is full of praise for all the help and services she receives. The couple get a weekend a month of respite care, and an extra Saturday. “That's enough,” she says. “They are my children, so I have to look after them too.

“Last Sunday Peter made his First Communion. He sang at mass and he brought up the gifts with all the other children.

“Everybody who has been involved with helping Peter, from the days he received early intervention, were at the service. There wasn't a dry eye in the church. They all came back to the house and hugged us and him. It was wonderful,” she says.

ABA: what is it?

ABA is a system of autism . treatment based on behaviourist theories. Behaviours are taught through a system of rewards and consequences.

ABA breaks each learning task into several sub-tasks. To teach a child to write on paper, the child is first taught to pick up a pencil. Then the child locates the pointed end and learns to connect with the paper. The number of sub-tasks varies between children. The system looks at a child's behavioural pattern and works out a specific package to suit them. But the package will change. If successful, the child will need to move on to something else.

ABA is not a cure or a magic solution. There are no magic solutions for autism. But most children with it can be helped by ABA at some stage."


http://tinyurl.com/yt5tvb

Wednesday, June 20, 2007

UNB CEL Autism Intervention Training Program (K - 12) 2007-08





For those of us who have been advocating for, fighting for is a more accurate description, effective evidence based interventions for autistic children in New Brunswick one of the great successes has been to see the development of the UNB-CEL Autism Intervention Training Program. The UNB-CEL AIT has achieved national recognition. When Conor was diagnosed, originally with PDD-NOS, subsequently with Autism Disorder, there were almost no properly trained interventionists in the province to help. Now agencies exist in all major centers in New Brunswick to provide pre-school intervention, staffed by people who have received quality training from UNB-CEL.

First steps have also been taken to train Teacher Aides and Resource Teachers to work in our schools as Autism Support Workers and Clinical Supervisors. The UNB-CEL provides the assurances of quality and integrity in the training and testing of candidates that are not otherwise available in Atlantic Canada and that are infinitely superior to some of the shoddy, internet training "alternative solutions" proposed by those with vested, proprietary, interests in promoting cheap, quick fix "solutions" to New Brunswick's autism education crisis.

The UNB-CEL AIT is a solid step forward in helping our autistic children. This K-12 program will help those, like my son Conor, for whom the pre-school programs did not exist. Parents fought hard to establish this program and to ensure that penny wise pound foolish public decision makers understood the importance and value of this program. Ultimately two persons deserve full credit for this program. Ann Higgins of UNB-CEL who has the business and organizational savvy to put this program together year after year. And above all Professor Emeritus (Psychology)and Child Clinical Psychologist Paul McDonnell whose ideas led to the creation of the UNB-CEL Autism Intervention Training program and the individual who has educated so many parents, professionals and public servants in New Brunswick about autism and effective evidence based interventions for autism.

Autism Intervention Training Program (K - 12) 2007-08

This program is intended for those in the K-12 public school system.

The deadline for applications to CEL is June 12, 2007
Download the Application Package here (PDF format)

Program Delivery
The program is delivered through face to face teaching integrated with video conferencing, web-based training, and hands-on practicum. The guiding design principle of this blended model is to provide an instructionally sound, flexible, user-friendly teaching and learning solution.

For applicants to be considered for the program, they must be available to attend all components of the program including theory (October and November), workshops, and practicum sessions. As this is a distance program, participants must have access to a computer, the Internet, and a printer.

There will be three (3) practicum locations this year: Moncton and Fredericton for English, French site yet to be determined. Participants will be assigned to the location they request on the application where possible. Travel may be required, as seating is limited.

Resource Teachers are required to complete/attend:

* All sessions of the core theory,
* Three (3) weeks of core practicum,
* Advanced theory readings and on-line discussions,
* Two (2) weeks of advanced practicum, and
* Two (2) professional development workshops.

Teacher Assistants are required to complete:

* All sessions of the core theory,
* Three (3) weeks of core practicum, and
* One (1) professional development workshop.

Applicants will be required to provide a letter of support from their supervisor and a reference letter from a person familiar with their work with children. Applicants will also be required to provide CEL with current criminal record information.

Resource Teachers

This course consists of theory, a core practicum, an advanced practicum, advanced readings and on-line discussions, and specialized professional development workshops. Several topics covered during the training include: How to Supervise and Consult, Professionalism, Program Writing, and Assessment Tools and Rating Scales.

Applicants must have:

* A Master's degree in a Education or in health care profession such as psychology or speech and language pathology; and
* A minimum of two years experience working with children or youth with developmental delays.

Teacher Assistants

This course, which consists of a series of lectures, a core practicum and specialized professional development workshops, covers topics such as: Teaching Social Skills, Prompting and Shaping, Self Help Skills, Communication, Data Collection, Reinforcement, and Function of Behaviours.

Successful completion of this course will lead to more effective practices while working with children diagnosed with autism, increased job satisfaction and further employment opportunities in the field of autism.

Applicants should have:

* A post-secondary diploma related to early childhood education (ECE), two years of post-secondary studies in a related field or equivalent; and
* A minimum of one year of working with children or youth with developmental delays.

The Autism Intervention Training Program will be offered in October 2007 through to May 2008. A detailed schedule will be provided upon acceptance to the program, in June 2007.

Download the Application Package here (PDF format)

Contact Information
For additional information about this program, please contact:

College of Extended Learning UNB
P.O. Box 4400 Fredericton, New Brunswick, Canada E3B 5A3
Telephone: 506 458-7920
Toll Free: 1 866 599-4646
Fax: 506 453-3572
Web Site: cel.unb.ca

An Excellent Autism and ABA Blog

Michael Goldberg, at Autism Bulletin, has highlighted an excellent blog about Applied Behavior Analysis and autism by Angela Mouzakitis, BCBA, (Board Certified Behavior Analyst) called Applied Behavior Analysis: Current Topics. There are many "anti-ABA" blog sites on the internet, mostly by people with little or no knowledge of, or experience with, ABA. Ms Mouzakitis blog site sets out her very impressive credentials on these subjects:

"Angela Mouzakitis
Astoria, New York, US
I teach in the Graduate Program in Special Education at CUNY Queens College. I am certified as a school psychologist, special education teacher and behavior analyst. My field of interest and experience is predominantly working with and teaching children with autism following the principles of applied behavior analysis. My research on my dissertation addresses the treatment integrity of behavior support plans in public and private schools that provide educational services to children with autism and developmental disabilities. In the future I am interested in exploring functional behavior assessment in relationships.
"

http://appliedbehavioranalysis.blogspot.com/

Autism Awareness Campaign UK Calls for Autism Action




Our friends in the UK are also fighting for a national autism strategy. Soon to be Prime Minister Gordon Brown is being urged by the Autism Awareness Campaign UK to take decisive action in providing autism services in health, education and respite care. It is refreshing to see the call to maintain special schools and to build specialist autism schools included in the campaign. Here in New Brunswick Canada the inclusion philosophy has become a sacred cow which has hindered serious examination of evidence based approaches to educating autistic students. Hopefully, when Mr. Brown becomes Prime Minister of the UK he will take real action and do more than his Canadian counterpart Stephen Harper whose national autism strategy consists of a one page web site of general autism information.

Press Release from:
Autism News UK
(London, UK)The Prime Minister-in-waiting Gordon Brown who takes over on 27th June and moves into No 10 Downing Street has been urged by autism campaigners to act decisively on autism and Asperger's Syndrome. Ivan Corea of the Autism Awareness Campaign UK who recently met Gordon Brown and his wife Sarah, urged the Chancellor of the Exchequer to launch a national strategy on autism and a 10 year plan of action. Autism is a neuro-developmental disorder, according to estimates over 500,000 people in the UK are on the autism spectrum.According to UK researchers 1 in 100 children may have autism. It is now one of the most serious education and health issues facing the nation. Many suffer without proper public services in education, health, specialist speech therapy and respite care - a postcode lottery to public services exists across the UK. There are serious concerns about the witholding of statements from autistic children.

The Autism Awareness Campaign UK is calling on Gordon Brown to take firm and decisive action in order to help parents, carers and people with autism and Asperger's Syndrome. Campaigners are also calling for a halt to the closure of special schools and are urging the Government to launch a building program of specialist autism schools and autism units in mainstream primary and secondary schools. Campaigners are urging Gordon Brown to act on the Autism Report submitted to Her Majesty's Government detailing concerns and recommendations. The Autism Report is backed by several leading charities, voluntary organisations and people from faith communities are are supporting the call for a national strategy on autism. There is huge momementum in parliament in Westminster with parliamentarians of all parties signing an early day motion on autism - EDM 1359. Lee Scott MP launched a landmark debate on autism in Westminster Hall early this year. He too is pressing Gordon Brown to act on autism.

Tuesday, June 19, 2007

Privilege Can Be Waived - McGuinty Government IS Fighting Children With Autism And Their Parents



The Promise Breaker


There are few privileges more sacrosanct in our common law heritage than that of solicitor-client privilege. It is a central element of our system of justice. It permits clients to share information vital to their case with their lawyers in confidence that the information will not be disclosed to opposing parties. Without such confidence it would be difficult for our legal system to function properly. The McGuinty government is advancing a powerful argument in its dispute with NDP MLA Shelley Martel and parents of autistic children seeking to know how much money the McGuinty government spent fighting the autistic children and their parents that Ontario Premier Dalton McGuinty had once, before becoming Premier, promised to help. But, privilege must be examined in the context of the case at issue. This case is about a government leader who turned his back upon, and fought with public monies, those he had once promised to help.

The lawyer for the Crown, the McGuinty government, is well within her rights, or more properly, her client's rights, to advance solicitor-client privilege as an argument in the Crown's case. She is wrong however, simply wrong, when she says that "This is not about fighting children with autism and their parents". That is exactly what this entire proceeding is about.

This case is about Dalton McGuinty, the candidate for Premier of Ontario who campaigned on a promise to help autistic children who, once wearing the Premier's Crown, broke his promise and went further. The "Honourable" Premier then turned his legal guns on the parents and autistic children he had promised to help. The Supreme Court of Canada in the Auton case effectively removed the Charter of Rights as a means of protecting the equality interests of autistic children. In Auton the SCC made it clear that governments, not courts, will decide whether autistic children will receive treatment for their condition. As weak as the Auton decision was in its characterization and understanding of autism and Applied Behavior Analysis, the decision was crystal clear on its central point - government decides how public monies will be spent.

Mr. McGuinty, once Premier, failed to keep his word. Instead of spending public funds on treating autistic children as he had promised, he and his government decided to spend public monies fighting autistic children and their parents in court to make sure they would NOT get the public funds for treatment he had once promised them. The fact is privilege, if it applies to disclosure of legal fees, which is not entirely clear, can be waived. The McGuinty government could waive the solicitor client privilege issue and disclose to the public and to the parents he had once promised to help the amount of public monies, in part at least the parents own monies, that he spent fighting them. As the SCC said in Auton governments decide how public monies will be spent. It is government which must also then be responsible to at least account for how they are spent.

Waiving privilege, being open with the public and with the parents of autistic children, is an option. Waiving privilege might disclose legal strategies. The strategies however would not seem all that important now that the Charter is no longer available to effectively help autistic children and other disadvantaged groups. The real issue is that waiver of privilege would almost certainly result in the disclosure of information embarrassing to Mr. McGuinty, the promise breaking Premier of Ontario.

The argument before the court IS about solicitor client privilege as the government lawyer argued. It is ALSO about political embarrassment. It is ALSO very much about fighting autistic children, and their parents, the very people Ontario Premier McGuinty had promised to help.



Families of autistic kids seek provincially funded treatment

NDP health critic asks: How much did Ontario `squander' on litigation?
Jun 19, 2007 04:30 AM

Tracey Tyler

LEGAL AFFAIRS REPORTER

Nancy Morrison re-mortgaged her home four times to pay for therapy for her 8-year-old autistic son.

At the same time, the Ontario government was waging a court battle against families seeking provincially-funded treatment for their autistic children.

"Our family has gone broke while the government has gone on fighting," she said.

That experience prompted Morrison to come from Bradford to the Divisional Court in Toronto yesterday to support NDP health critic Shelley Martel, who is trying to find out how much the Ontario government spent on legal fees contesting two lawsuits known as the Wynberg and Deskin cases.

Instead of "squandering" money on the litigation which ended earlier this year, the province should have funded therapy for autistic children, Martel contends.

She won the first round in April, when Ontario's Information and Privacy Commissioner ordered the attorney-general to disclose the total amounts spent on legal fees and disbursements in the cases.

But lawyers for the province were before the Divisional Court yesterday appealing that decision. "This is not about fighting children with autism and their parents," Crown counsel Kim Twohig argued.

The real issue is preserving the sanctity of solicitor-client privilege, which protects communications between a lawyer and client, including legal bills, she told Justices Dennis Lane, Sidney Lederman and Katherine Swinton.

Legal fees can reveal a lot, including trial strategies, the Crown contends. In the Wynberg and Deskin cases, for example, the attorney-general apportioned the cost of its legal services to various ministries – including education and long-term care – by assessing which ministries were at greatest risk of being held responsible for breaching the families' Charter rights, the court was told.

Crown counsel Sarah Wright argued that an astute observer or knowledgeable lawyer could use that information to "know where to catch the Crown flat-footed."

But Martel's lawyer, Frank Addario, said his client has been "extremely clear" that "she wants the totals" from the government's legal bills – "not the dates, time and information about who did what."

In the Wynberg and Deskin cases, about 30 families claimed the Ontario government was in breach of the Charter by failing to provide treatment programs for autistic children over age 6.

After the families won at trial in 2005, the government began funding therapy for older children, which continues even though the Ontario Court of Appeal overturned the trial judge's finding last year.

But treatment programs are not available in schools – a key issue in several ongoing cases, including two proposed class action lawsuits and 100 complaints now before the Ontario Human Rights Tribunal.

The court reserved its decision.


http://www.thestar.com/article/226868

Monday, June 18, 2007

Autism: Why The (Vaccine) Debate Rages




Sharyl Attkisson is the Capitol Hill Correspondent for CBS News.




I am not a subscriber to the vaccine causes autism theories. And I am no fan of David Kirby's ham handed presentation of the vaccine theories. But I do not bash parents who believe that there is a causal relationship. Nor do I think rational discussion of the issues surrounding the issues should be forbidden or research prevented. The following CBS article by Sharyl Attkisson is one of the best that I have read at explaining why many parents still believe that vaccines have caused their children's autism.




Autism: Why The Debate Rages

Posted by Sharyl Attkisson

(CBS)
Sharyl Attkisson is the Capitol Hill Correspondent for CBS News.

With the first autism case now being heard in federal vaccine court in Washington D.C., it makes sense to ask: Why is anyone even still debating the possibility of a link between vaccines and autism? After all, for years, many government health officials, advisors and vaccine manufacturers have said there's no association.

Here are a number of reasons why the question remains open:

1. While government scientists, advisors and pharmaceutical companies have been responsible for infinite lifesaving and life improving medical advances, they are not infallible.

• It's the same group that originally thought it was safe to use x-ray machines in shoe stores, gave pregnant women Thalidomide for morning sickness and once allowed mercury in medicines. They assured us Vioxx and Duract were safe painkillers, prescribed Rezulin for diabetics and then denied any of them were responsible for patient deaths. If we never questioned that group, we might not have discovered that Fen-phen and the dietary supplement Ephedra are not safe weight loss products, that antidepressants in kids can lead to suicidality and Viagra can cause blindness. The list goes on.

• When it comes to vaccines, the same group failed to predict that the 1990's rotavirus (diarrhea) vaccine would have to be pulled from the market after infant deaths. They encouraged use of the oral polio vaccine (eventually discontinued after it gave too many children polio). And they allowed the use of a mercury neurotoxin preservative in childhood vaccines, only to admit later that they hadn't thought to calculate the cumulative amount kids were getting as more and more vaccines were added to the childhood immunization schedule.

• Recent history demonstrates that too often, government health officials, mainstream doctors and pharmaceutical companies aren't on the leading edge of alerting us to health risks; they're bringing up the rear. Patients feel left to fend for themselves, seeking independent research and opinions on their own. They and their dogged, relentless determination have often been the catalyst that eventually brings medical dangers to the forefront.

2. Government scientists, advisors and vaccine manufacturers often take an all-or-nothing approach to vaccinations.

• Government officials and infectious disease experts I've spoken with are fearful that if vaccine side effects are better publicized, or if a link between vaccines and autism and ADD were made, the public would overreact and lose faith in the entire vaccination program. The result, they're afraid, would be parents refusing to give their children any vaccines, leading to new, deadly epidemics of preventable diseases. That indeed would be a disaster. However, their fears have resulted in something I call an all-or-nothing approach: they tend to promote nearly all vaccines for nearly all children as equally necessary and equally safe. Yet at the same time, if asked, they agree not all vaccines are equally safe, equally beneficial, equally necessary and equally tolerated by each individual child.

• Through the Internet and other resources, parents are now able to find research on vaccines and read it for themselves. They compare the government's all-or-nothing approach to the research and become skeptical that the government is presenting the whole picture on vaccine safety generally.

3. Government officials and mainstream scientists who dispel any vaccine/autism/ADD link have ties to vaccine makers.

• There's so much overlap among pharmaceutical companies, government scientists and advisors that the information they provide at least has the appearance of a conflict of interest. Government scientists and advisors often do not mention their connections to the vaccine industry when they provide opinions on the vaccine/autism/ADD issue.

• One of the best examples of this is the landmark autism/vaccine study published in Pediatrics. Early in his study, the lead author, CDC's Dr. Thomas Verstraeten, found statistically significant associations between the amount of mercury (thimerosal) exposure kids got from their childhood vaccines, and a wide range of brain disorders. However, the published version of the study (the one the authors say is accurate) found no evidence of a link to autism. Not disclosed was that Dr. Verstraeten had left CDC midstream during the study and had gone to work for Glaxo, a vaccine manufacturer. That failure to disclose was criticized in a later publication of Pediatrics, but it got little mainstream attention. Also getting little attention was a letter from well-respected scientists, also in Pediatrics, who echoed what parents of autistic children had been saying for months: they questioned the use and exclusion of certain data from Dr. Verstraeten's study that eventually reduced the statistical ties between vaccines and neurodisorders.

• University and government researchers and advisors often do research for vaccine companies, help develop vaccines (even profit from them), and/or are paid to consult for them. Often, these researchers do not disclose their industry ties when they publicly dispel the notion of a link between autism or ADD and vaccines.

• Lastly, the CDC is inextricably tied to vaccine makers through contracts and other business and financial relationships that open the door for the possibility of conflicts.

4. Non-profits which dispel any vaccine/autism/ADD link have ties to vaccine makers.

• Non-profits that promote vaccinations have ties to vaccine makers that they often do not disclose when giving their opinions on vaccine safety. One example is "Every Child By Two." This group contacted CBS News several years ago in an unsuccessful attempt to prevent one of our stories about the vaccine safety from airing. In forms filed for the IRS, the non-profit lists an official from vaccine maker Wyeth Pharmaceuticals as its Treasurer. It lists vaccine maker Chiron as a paid client.

• Another example of a non-profit tied to the industry is "The Vaccine Fund." Its President from 2000-2005 was Jacques-Francois Martin, formerly CEO of vaccine maker Sanofi-Pasteur, CEO of vaccine maker Chiron, and President of the International Federation of the Pharmaceutical Manufacturers' Association. While at The Vaccine Fund, his salary was paid by a company that says it "has developed particular strength in the vaccine industry and vaccine development."

5. The dual role of the CDC undermines the appearance of fairness.

• There is a perceived, if not real, conflict of interest with the government's Centers for Disease Control (CDC) heavily promoting vaccines, but also responsible for monitoring adverse events. At least two respected medical journals, the "American Journal of Public Health" and "Pediatrics" have published letters or articles recommending "greater independence in vaccine safety assessments" apart from "the highly successful program to promote immunizations." In short, the CDC's bread and butter is achieving high vaccination rates. But that role is in conflict with the agency's responsibility to fully research and disclose adverse events that could, in theory, bring down vaccination rates.

6. There is no definitive research proving a link between vaccines and autism or ADD, but there is also no definitive research ruling it out.

• Something rarely reported is that while there's no definitive study linking vaccines to autism or ADD, there is also no study definitively disproving a link. And there's a substantial body of peer-reviewed, published science from places like Columbia, Yale and Northeastern suggesting a link, or pointing to the need for further study.

• Many credible voices deny a link. But many other credible voices support the idea of a link. One example of the latter is George Wayne Lucier, formerly a senior official at the National Institutes of Health in Environmental Toxicology, an NIH advisor, member of the National Academy of Sciences Committee on Toxicity Testing and a scientific advisor for EPA who concludes "...it is highly probably that use of thimerosal as a preservative has caused developmental disorders, including autism, in some children." A lengthy Congressional investigation also concluded that the autism epidemic is likely linked to vaccinations.

7. Those who say autism and ADD are not linked to vaccines do not know what is causing the epidemics.

• The most frightening part of the autism/ADD epidemics is that if, indeed, they're unrelated to vaccinations, that our best, brightest public health experts still have no idea what is causing it. Excluding ADD, one out of every 150 American children are now being diagnosed with autism.

Vaccinations have provided lifesaving miracles in public health. However, it's undisputed that they are also responsible for many serious adverse events including brain disorders and, rarely, deaths. Trying to maximize the potential benefits of vaccines and minimize the harm shouldn't be seen as a threat to the nation's inoculation program, it's merely a logical step forward.

One scientist who testified for the plaintiff this week in The Vaccine Court said there's a way to test children for a hidden hole in their immune make-up that makes them susceptible to bad immune reactions from vaccinations. He said that, ideally, every child should undergo such a test before their first vaccinations. But he also said the test is very expensive and so "not worth it." Many parents might disagree. If they knew such a test was available, they'd find a way to pay for it. But such information has to be disseminated to the public before a first step can even be considered.

Mainstream medicine initially said that autism was caused by mothers who weren't affectionate enough with their children. If that doesn't teach us that we should always seek further knowledge and not necessarily accept what's spoon-fed to us by certain experts…then nothing will.


http://www.cbsnews.com/blogs/2007/06/15/couricandco/entry2934107.shtml

Canada's Shame - Autism Needs Funding




Another excellent letter in the Montreal Gazette.

Autism needs funding

Letter
Published: Monday, June 18, 2007

Your editorial, "Autism sufferers also need help," (June 15) could not have been more timely and is much appreciated. As you note, the Supreme Court has put the ball in Parliament's court concerning funding.

It is worth noting that recently, in South Carolina, the state House and Senate overrode the governor's veto against requiring insurers to provide coverage for autism therapy to affected children up to age 16.

While we Canadians rightly congratulate ourselves on our humane medicare system, the autism issue puts us to shame.

The personal devastation of caring for an autistic child should not be compounded by financial ruin. We rarely question the enormous sums spent to prolong the life of a dying person by months, sometimes years. Surely, autism should benefit from similar concern.

Shelley Corrin

Sunday, June 17, 2007

Autism & The Neurodiversity Message - We Know What is Best for Your Autistic Children - Do Not Try to Treat or Cure Your Children

There are a number of disputes which plague the world of autism. Although none is as curious as the anti-autism cure movement known as "neurodiversity". Composed largely of persons with high functioning autism and Asperger's it is bolstered also by some parents of autistic children who subscribe to the view that by trying to cure their child's autism they are trying to destroy their child's essential identity. These parents, and some professionals, also repeat the Neurodiversity mantra that parents seeking to cure their children of autism or even to treat its more egregious symptoms actually hate their children. These parents and professionals then have no qualms about spreading their hostile message and accusing other parents who have not succumbed to the Neurodiversity message of hating their own children.

The current US court proceedings highlight the beliefs of some parents that their child's autism was caused by thimerosal, a mercury containing organic compound used as a preservative in some vaccines. Even the dates at which thimerosal ceased being used widely in vaccine preservatives, if at all. But nothing can compare to the circular, and at times bizarre, logic of the Neurodiversity advocates and their attacks on parents seeking to help their own children.

The fundamental premise of Neurodiversity is itself a sound premise, one with which I completely concur and one with which I am sure all parents of autistic children are in agreement - acceptance. Acceptance of autistic persons as human beings deserving of dignity, respect and inclusion in all aspects of society. After that fundamental premise however the Neurodiversity movement falls off the rails.

Not content with acceptance of autistic PERSONS, not content with acceptance of the fact that persons are autistic, the Neurodiversity movement tells us, parents included, that we must stop trying to treat and cure our autistic children; we must embrace our children's autism as a wonderful natural variation of human existence, one that, in some ways at least is even superior to other such variations. Indeed we must find and accept the joy of autism.

To reach this stage of Neurodiverse enlightenment parents are told, amongst other things, that they do not know what is best for their own children, they can not know what is best, unless of course, they too are autistic. Far better that they listen to complete strangers who have never met their children, never cleaned up after their children, never fed their children, never laughed with or tickled their children, never sang with their children, never fixed windows broken with their children's hands, never helped their children to eat as they literally starved themselves to near death states, never helped their children calm down while banging their heads against walls or biting their hands or wrists. Better to listen to strangers who will not be there for their children when they need residential and institutional care as adults. Stop presuming that mom and dad knows best. The experiences and observations of parents who live with, care for and interact with their autistic children on a 24/7 basis from birth onward should be given no weight. Parents know naught. Only the internet strangers who are, or claim to be, autistic can truly speak for all autistic persons including the children whose parents seek to help, treat and cure them. Only by embracing the wisdom of these strangers can parents reach Neurodiverse enlightenment.

When parents point out that these Neurodiverse sages do not share the same severity of autism as their children and can not possibly understand their children's challenges the Neurodiverse are offended. They are offended that parents would presume to divide autistic persons by the degree of severity of their autism. This is where the Neurodiversity logic breaks down totally and they reach and grab for any theory or explanation to maintain their self promoted presumption of autism expertise. Although the Neurodiverse embrace the label of autistic, or autism, as a descriptive term they reject its origins as a medical diagnosis, one of a spectrum of disorders of varying degrees of severity and different characteristics.

Autism is a term used loosely to describe a number of disorders now classified on Axis I of the DSM-IV, the Diagnostic and Statistical Manual of Mental Disorders, 4th edition (DSM-IV), and known as the Pervasive Developmental Disorders. Autism Disorder is a PDD. In the 4th edition a number of diagnoses were added to the PDD's - Rett's Disorder, Childhood Disintegrative Disorder and Asperger's Disorder. Asperger's Disorder is the diagnosis which will likely be made for persons who have traditionally been labeled as having "High Functioning Autism." It is the appropriate diagnosis for individuals who have evidence of many Autistic-like symptoms but for whom there are no language impairments. - Meredyth Goldberg Edelson, Ph.D. Department of Psychology,
Willamette University. As Dr. Edelson also points out in Autism-Related Disorders in DSM-IV there are many variants in autism disorders. The reasons for tightening the criteria for Autism and for adding Rett's Disorder, Childhood Disintegrative Disorder, and Asperger's Disorder to DSM-IV is to recognize that Autism is a disorder with many possible symptom variants. Because of this, individuals diagnosed with Autism in the past have been heterogeneous. . Notwithstanding that the Neurodiversity movement of some high functioning autistic persons, some sympathetic parents and professionals embraces the diagnostic label of autism they reject the other elements of diagnosis, the heterogeneity that gives rise to different diagnoses based on severity and nature of the autism or pervasive developmental disorders.

While rejecting the views of parents, who can not believe that these internet essay writers and interveners in court cases and political proceedings have much in common with their children, and while rejecting the professional classification which gives rise to the diagnosis of Autism which they embrace, the ND polemicists also ignore the writings of their own academic icons, particularly Montreal psychiatric researcher Dr. Laurent Mottron. Dr. Mottron has himself acted as an advocate for the Neurodiversity movement, filing an affidavit in support of Michelle Dawson who intervened in the famous Auton proceedings before the Supreme Court of Canada and appearing himself as an expert witness before the recent Canadian Senate proceedings examining funding of autism treatment in Canada. Dr. Mottron, like his colleague Michelle Dawson, opposes Applied Behavior Analysis as a treatment for autism.

The good Dr. Mottron, notwithstanding his entrenched opposition to ABA as a treatment for autism, does not appear to have any serious expertise as a clinician and appears to have a very narrow range as an autism researcher, focussing his several studies and reports per year almost entirely on subjects which his reports themselves invariably describe as HFA (High Function Autistics), Asperger's, and even Autistic Savants. Thus while the Neurodiversity movement has appointed Dr. Mottron as one of its heroes it seems to have overlooked the fact that he himself uses a descriptive system which recognizes different levels of severity, different symptoms, of the various and heterogenous PDD or Autism Spectrum Disorders. Dr. Mottron's high functioning autism studies also contribute to the efforts of such as Morton Ann Gernsbacher and their mutual colleague Michelle Dawson. It does not appear that any of this illustrious trio will soon be rushing out to study, or heaven forbid actually work with, the lower functioning autistic persons residing in institutional care and unable to communicate in any meaningful way with other people.

At the end of the day the fundamental contradiction of the Neurodiversity movement is that it is a movement of people who organize based on a spectrum of neurological disorders, a spectrum divided by deficits of differing types and severity who then argue that their disorder are not disorders at all just different orders. And then some argue that they are the only truly authentic voices for these disorders (which are not disorders) even though their deficits are different than those of the children whose parents are trying to help them through treatment or cure.

And while they are quick to complain about the insensitivity of language used to describe the serious challenges faced by more severely autistic persons they are equally quick to use pejoratives such as "curebies" to describe concerned and caring parents. The neurodiversity crowd even stooped to accusing the parents in the touching video "Autism Every Day" of having faked or staged the video. I was not in the "Autism Every Day" video. But my son who I love dearly presents, along with great joy, incredibly challenging deficits which threaten his own safety and that of his brother, mother and even me, as when driving I am grabbed from behind by a suddenly distraught autistic son.

The Neurodiversity movement is at best silly and at worst insulting, abusive and dangerously misleading. I, for one, will never drink the Neurodiversity Kool-Aid. I will leave that to those who believe that, in order to find joy in their autistic child, they must find joy in his or her autism, a mistake I will never make.

Autism in Canada - Straight Talk In A Letter to the Editor



With all the heated disputes over vaccines and autism one finds on the internet, and all the neurodiversity neurononsense, it is refreshing to find a letter to the editor of an online paper which gets straight to the point and tells the truth about autism in Canada. Treatment helps autistic children and their families. And our governments have been heartless and cruel in denying access to treatment. Thank you for speaking up and offering some straight talk Penny Berns.

Autism treatment helps

Letter
Published: Sunday, June 17, 2007

In Quebec, parents of autistic children are left out in the cold. The government adamantly refuses to pay for treatment that it claims has not been proven 100 per cent to work.

How heartless and cruel to deny these parents, who already have so much on their plate. Child autism is on the rise, and they and their parents need help.

Some parents and grandparents say they have had to sell their homes and go into debt to give their autistic children/grandchildren early-intervention treatments, since Quebec refuses to pay. The earlier it's treated the better the results - often big, positive changes in children.

It's ironic that some in the U.S. envy Canada's medicare system. Now the shoe is on the other foot. A friend's grandson in New Jersey was diagnosed with autism at 20 months of age and she told me that the state, by law, has to provide - free - every available therapy to autistic children; everything from water exercises to speech therapy to ortho-therapy. The parents are already seeing big strides.

Penny Berns

Dollard des Ormeaux

Saturday, June 16, 2007

Autism Quotes #2

I have worked with numerous children with Autism and I have to say, ABA is the only way. The difference I have seen it make in the lives of the children and the families brings tears to my eyes.

- Krista Paradowski, Winnipeg, Manitoba

It is only when ABA - the most effective, science-based treatment for
autism - is brought under the Medicare umbrella and made available to
Canadians who suffer from this core health need, that we can rightfully claim
to be a nation committed to the values of universal healthcare.


- Senator Jim Munson


While no study is perfect, there are no other randomized trials of any research interventions, nor large clinical trials demonstrating effectiveness as ABA does. Although some have suggested that the research is biased, it is consistent across research groups, across continents, across age groups and across settings, whether it is at schools, in centres, or in homes.


- Dr. Sheila Laredo, Ph.D, Physican, Mother of 3 Children, 2 with autism

One criticism of ABA is that it has not been effective for all people. That is probably true. The fact that not all children will be cured by ABA does not preclude the fact that the majority of children will enjoy a profound and substantive benefit. My children have learned to read, write and speak without tantrums all the time and to participate in a regular class. ABA should not be held to a standard that is not expected for other interventions. When we give chemotherapy for cancer or cholesterol drugs for prevention of heart disease we strive for 100 per cent effectiveness but we do not achieve it. ABA meets and exceeds the standards we set for other treatments.


- Dr. Sheila Laredo

Another criticism is that ABA or IBI is unethical because it does not respect the autistic individual. I applaud those individuals that have done so well they can speak to you today despite the fact that they have not needed ABA. Unfortunately, the dismal data is that such individuals are in the tiny minority. The fortunate experience of exceptional cases should not set policy for the vast majority of individuals with autism — people like my sons.


- Dr. Sheila Laredo

Autism-Vaccine Link Continues to Erode - LA Times


Autism discussions often provoke heated, intense discussion, debate and worse. Neurodiversity advocates condemn parents for seeking to cure or treat their own children, Dr. Ivar O. Lovaas, who has in fact done so much to help generations of autistic children, is painted as an evil mad scientist, but some of the most intense verbal warfare has been spawned by the belief that the MMR vaccine and thimerosal, a mercury based vaccine preservative have caused the dramatic rise in numbers of autism diagnosis in recent years. This belief has led to ome parents refusing to vaccinate their children in some countries. Here in Atlantic Canada we have recently experienced a mumps outbreak which some medical people have traced back to the United Kingdom and areas of lower vaccination rates resulting from the MMR Autism scare. As the following article from the online edition of the LA Times summarizes the science to date just does not support the existence of a vaccine autism link.

Link to autism continues to erode
Study after study dispels an earlier theory that the vaccine triggers the disease.
By Mary Beckman, Special to The Times
June 18, 2007


Last week, the U.S. Court of Federal Claims began hearing arguments about whether a childhood vaccine that protects against measles, mumps and rubella caused autism in a 12-year-old (Cedillo versus Secretary of Health and Human Services). Here is a look at the studies behind the controversy.

In 1998, a gastroenterologist named Dr. Andrew Wakefield, then at the Royal Free Medical School in London, examined 12 children with bowel problems. Nine had autism, a disorder that affects 1 in 150 youngsters. The parents of eight recalled that the symptoms started soon after the children received a vaccine against measles, mumps and rubella (the MMR vaccine). Wakefield postulated in an article in the Lancet that the vaccine might cause autism.

"Then he held a press conference and went a bit further," says Rachel Casiday of Durham University in the United Kingdom, who studies peoples' attitudes toward MMR and autism. Wakefield recommended the United Kingdom's Department of Health provide the three vaccines separately. The department refused, due to scientific, logistical and economic reasons. Casiday said this response probably made people think the government wasn't taking the issue seriously, and some parents of autistic children began to wonder.

Autism researcher David Mandell, of the University of Pennsylvania School of Medicine in Philadelphia, says the U.S. government made similar mistakes, with discussions about the potential link being held behind closed doors at the Centers for Disease Control and Prevention in Atlanta. "That gave off the appearance of impropriety," he says.

In 2004, 10 of 12 coauthors of Wakefield's paper retracted the claims in it.

Because of the public's concern, various governments investigated the possible autism-vaccine link with more rigorously-designed studies. Researchers focused on two vaccine components: thimerosal, a mercury-based preservative, and the killed virus that provides the immunization against measles.

Scientists started with studies that looked at how many children were being vaccinated and how many new cases of autism were diagnosed, to see if there was a link between the two, says epidemiologist Craig Newschaffer of Drexel University School of Public Health in Philadelphia. A 2001 study in California, for example, found that between 1980 and 1994, the number of MMR vaccines administered every year rose about 14%, but the autism rates rose 373%. Thus, vaccine administration could not account for the rise in cases of autism.

A 2005 Japanese study of children in Yokohama between 1988 and 1996 found that MMR vaccination rates dropped over that time, but autism rates rose, even after vaccinations stopped in 1993.

But the best evidence compares rates of autism in children who received the vaccine with rates in children who did not, Newschaffer says. A 2002 Denmark study of more than 537,000 children — 440,000 of whom had received the vaccine — between 1991 and 1998 found the same autism risk in vaccinated and unvaccinated children. No link was found between vaccination date and onset of autistic symptoms.

Wakefield had proposed the measles virus hid in tissues and induced the immune system to cause autism. But a 2006 report found that autistic children had no more measles virus in their blood cells than other children. Also, no connection has been found between children contracting measles, and autism.

Still more studies have found that autism rates continued to rise after thimerosal was removed from vaccines.

"Those studies just kept piling up that showed no association between MMR or thimerosal exposure and autism," Newschaffer says. To date, he says, about a dozen studies have investigated autism's link to one or the other, and none has found one. "Among the scientific community, it's pretty generally accepted that there is no link."

Newschaffer says researchers can't rule out a small percentage of highly susceptible individuals that the vaccine might affect, and so the search is still on for a possible link between either measles or mercury and the disease. The idea is not unreasonable, Newschaffer adds, but finding susceptible individuals is difficult.

Another unresolved issue is whether autism is actually increasing or physicians are getting better at diagnosing it. "It is extremely, extremely hard to tell the difference," Newschaffer says.

Mandell says he sympathizes with parents who see their toddlers all of a sudden lose the skills they've acquired. "It's human nature to search for an answer: 'Why does this happen?' " he says.

But regardless of where the disease is coming from, most people still get their children vaccinated. "There wasn't a wholesale revolt against the vaccine," Casiday says. "And in the last few years, it's been on the rise." And that, she says, is good news for the public welfare.

Join National Autism Strategy/ABA in Medicare NOW Facebook Group

















Everyone with an interest in autism who wants to see aba treatment for autism included under medicare coverage, who wants to see ALL Canadian children with autism receive treatment for their autism is invited to join the
National Autism Strategy / ABA in Medicare NOW! FACEBOOK group at this location:

http://www.facebook.com/group.php?gid=3128185580

Come on over folks.

Let's get our federal government to start taking autism seriously and ensure that whether a child with autism lives in Oromocto, New Brunswick, Rimouski, Quebec, or Edmonton, Alberta they will receive government funded ABA treatment for their autism.

Let's GET UNITED, let's GET POLITICAL!

Friday, June 15, 2007

Medicare for Autism NOW! Petition - Day 1 - A Good Start



Got off to a good start today with 44 signatures on the Medicare for Autism NOW! Petition. Above New Brunswick's famous (infamous?) blogger Charles LeBlanc relaxes at the Second Cup in King's Place Fredericton - and signs the petition.

I encourage everyone to download the petition from the FEAT BC site and get as many signatures as possible. If you can't download pdf files download Adobe Acrobat for free with the link from the FEAT ONTARIO main page.

Let's get those signatures and get them to our MP's to read in the House of Commons!

Let's GET POLITICAL!

http://featbc.org/petition.pdf

http://www.featontario.org/

Thursday, June 14, 2007

Medicare for Autism NOW! Petition


Please click on the url following to download the Medicare for Autism petition. Get your signatures and present them to your Member of Parliament with a minimum of 25 signatures and ask your MP to present to Parliament.

The Supreme Court of Canada and the Ontario Court of Appeal (Auton, Deskin-Wyneberg) have made it clear that the equality provisions of the Charter of Rights are of little or no assistance to Canadians seeking treatment for autistic children. Now is the time to GET POLITICAL!

http://featbc.org/petition.pdf


PETITION

TO THE HOUSE OF COMMONS IN PARLIAMENT ASSEMBLED

We, the undersigned citizens of Canada, draw the attention of the House to the following:

Whereas children suffering from an Autism Spectrum Disorder (ASD) are among the weakest and most vulnerable sector of Canadian society;

and whereas, in Canada the rate of children being diagnosed with ASD is high and increasing at an alarming rate (currently approximately 1 child in 195);

and whereas, until the cause and cure of autism are found, children suffering from autism can benefit from the provision of Intensive Behavioural Intervention (IBI) therapy treatment based on the principles of Applied Behaviour Analysis (ABA);

and whereas, for a variety of reasons including lack of assigned resources, unconscionable waiting lists, and delegation to Ministries with little or no expertise, the provision of IBI/ABA therapy treatment to children with autism is woefully inadequate;

Therefore, your petitioners call upon Parliament to

1) amend the Canada Health Act and corresponding Regulations to include IBI/ABA therapy for children with autism as a medically necessary treatment and require that all Provinces provide or fund this essential treatment for autism; and

2) contribute to the creation of academic chairs at a university in each province to teach IBI/ABA treatment at the undergraduate and doctoral level so that Canadians professionals will no longer be forced to leave the country to receive academic training in this field and so that Canada will be able to develop the capacity to provide every Canadian with autism with the best IBI/ABA
treatment available.


http://featbc.org/petition.pdf

Wednesday, June 13, 2007

Senator Jim Munson Says Medicare for Autism Now!




NOTES FOR REMARKS: THE HONOURABLE JIM MUNSON ONTARIO FAMILIES FOR EARLY AUTISM TREATMENT TORONTO JUNE 13, 2007


Thank you.

I feel very emotional about the subject of autism. It was because of a meeting, by chance, with the father of an autistic child, that I got involved in the issue. This father’s name is Andrew Kavchak and he works for the federal government. At lunch time, instead of eating a sandwich, he wears a sandwich board and walks on Parliament Hill to draw attention to the need for action to help children and families with autism.

It was my emotions that drew me into the issue and made me want to work on behalf of children and families with autism, but since then, after this emotional beginning, I’ve learned that there are many cut-and-dried reasons to work for this cause.

First of all, there are political reasons: autism is affecting about 1 in 160 families in Canada. It doesn’t discriminate and affects all groups of the population and in every region. It’s a far-flung constituency, if you will, and one that is getting bigger and, as you can see, certainly getting louder.

Second, there are financial reasons. Autism is a very expensive problem to address. Treatment that is proven to work, Intensive Behavioural Intervention, costs about $60,000 per year. But not providing treatment is even more expensive because it involves respite care, group homes, and institutionalization. A study by Harvard University puts the annual cost of autism to Canada’s economy at $3.5 billion. And this is without providing care across the board to every child who needs it. But it may surprise you to know that providing this care won’t cost us more. It will cost us less. In fact, by spending on treatment, we save $1.5 million per child, according to research undertaken in 2000.

So you see, addressing the problem is expensive, but not addressing it is even more expensive. Children with autism grow up to be adults with autism. And their devoted parents, who have repeatedly mortgaged their homes and undergone sacrifice after sacrifice to ensure treatment for their children, will one day pass away. And then it will be up to the state to look after the children they leave behind. Only five per cent of adults with autism are self-supporting. What happens to the 95% who need support? It could likely mean institutionalization – an alternative that is extremely expensive, much more expensive than treatment, and perhaps unnecessary, if early treatment is made available.

Harder to measure, but also very important, is the fact that the children who receive this treatment can show remarkable improvements that enable them to be part of society and contribute to it. It is an obvious benefit to individuals and society to treat autism rather than ignore it.

Some of you may be aware that I am also involved in the Special Olympics movement. My connection to this movement goes back many years to my first child, Timothy James Alexander Munson, who was born with Downs Syndrome in the late 1960s. He passed away before his first birthday. Being his father for that short time changed me. I learned first hand what it’s like to be a parent to a child with special needs.

If I look back to when Timmy was born, people with Downs Syndrome were routinely institutionalized. They were not considered to be part of society. Thanks to many efforts by many people, and I think thanks in particular to the Special Olympics movement, today we don’t consider people with Downs Syndrome and other mental health problems in the same way. We have come along way and we see these citizens taking their rightful place in our society.

If I look at autism today, I think we are where we were in the 1960s for Downs Syndrome. We don’t support children and families with autism as we should. We don’t make treatment that is known to work universally available. Without blinking, we consider institutionalization as an acceptable course of action. I’m here today to say that we must move forward and make the necessary investments in these children and their families. We can’t afford not to for financial reasons and for moral reasons.