Mecamylamine is a drug used in the 1950's to treat high blood pressure. It has more recently been used as a treatment for symptoms associated with Tourette's Syndrome and Attention Deficit Disorder. Now, it is about to be tested by a team at Ohio State University Medical Center as a treatment for autism symptoms:
It turns out the next new treatment might be something that's been around for generations. It's a drug called mecamylamine, and it was the first pill used to treat high blodd pressure in the 1950's.*** By the time Alicia was a child, it was nearly obsolete. Now, it just might help her son, and a million more children with autism.
"If it works, it would be a really important breakthrough," says Eugene Arnold, MD, with Ohio State University Medical Center. Dr. Arnold and his team of researchers will test the drug on children with autism. He says it's not what the drug did in the 50's to help with high blood pressure that's giving them hope, but what it's done recently. Mecamylamine has been effective in helping children control the symptoms of conditions like Tourette Syndrome and Attention Deficit Disorder. He hopes it may do the same in autism.
"There is some hope that it will make a significant improvement in the core symptoms: the social impairment, the communication, the repetitive behavior, such that it will help them to faster get along the road to rehabilitation," says Dr. Arnold.
Wednesday, October 31, 2007
Autism's Gold Standard Intervention - A Note to Dr. Rémi Quirion
Dr. Rémi Quirion
Scientific Director
Institute of Neurosciences, Mental Health and Addiction (INMHA)
Canadian Institutes for Health Research
Dear Dr. Quirion
Re: Autism's Gold Standard Intervention and the National Autism Symposium
I am a parent of an 11 1/2 year old boy with Autism Disorder. He is profoundly autistic. By profoundly I mean that he has limited communication skills and understanding of language and does not appreciate many of the dangers presented by everyday life. He also engages, from time to time, in self injurious behavior. As a distinguished professional in Montreal neuro-research circles you may not place much weight on my assessment of my son's realities even after living with, caring for, and loving him, for 11 1/2 years. To that end let me assure you that my assessment of my son is confirmed by a Pediatric Doctor's (two in fact) and a Psychologist's assessments.
As an outspoken parent advocate on autism issues my name was rejected by your organisation as a New Brunswick community representative at the National Autism Symposium to be held on November 8 and 9. Despite that fact, I ask you to consider, and anyone of the chosen delegates to consider during this symposium, the question of whether there is a Gold Standard for autism interventions at this time. You may not understand that for parents this is a critical question. Parents of autistic children will not be spending a lot of time worrying about the next development in Montreal neuro-research circles over the next few years. We tend to focus on the well being and best interests of our children; on the best ways to enhance their development and life prospects, to make their life better for them. Parents of newly diagnosed autistic children may not understand that there is in fact a Gold Standard intervention for autism, and that time is important in obtaining that intervention for their children.
You may or may not know that several reviewing agencies over the past decade have essentially reached the conclusion that there is, despite the superficial conclusions to the contrary of some otherwise earnest professionals, a gold standard for autism intervention. From Maine to New York to California, to the office of the US Surgeon General to the advisory board of the Association for Science in Autism Treatment to a recent United Kingdom review, all such reviews consistently point to Applied Behavior Analysis as the only effective evidence based autism intervention - to date.
This past week saw two further developments. Most well known are the two reports of the American Academy of Pediatrics. One report recommended early screening for autism. The other report reviewed some interventions. This quote is taken directly from one of those AAP Reports Management of Children With Autism Spectrum Disorders
The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4
It will not receive the attention of the AAP Reports but the Province of New Scotia also release a report, Autism Treatment Program Getting Positive Results, this week on its ABA based EIBI program :
The interim results of an independent program evaluation conducted by IWK Health Centre Research Services and Dalhousie University indicates that after one year of Early Intensive Behavioural Intervention (EIBI)treatment, virtually all 27 children in the first phase of the program had significantly improved communication skills. According to tests and parental feedback, they also had improved problem-solving skills and reduced behavioural problems.
...
Many of the children were about a year and a half behind in language-development skills when they began EIBI treatment. On average, children gained more than a year's worth of language skills in the first 12 months of treatment.
The National Autism Symposium is designed to be conducted by professional "facilitators" which usually means that open, frank discussion will not take place, that the issues discussed and conclusions reached will be essentially determined in advance of the symposium. On the assumption though that there is still some room for actual candid discussion of research issues of real import to autistic children and their families I ask you to encourage your professional colleagues, and others in attendance, to consider these two recent reports, the numerous other credible reviews of autism intervention research and the hundreds of studies over 5 decades which clearly establish Applied Behavior Analysis as the Gold Standard intervention for autistic children.
Respectfully,
Harold L Doherty
Fredericton NB
cc. Dr. Barbara Beckett
Assistant Director, Ottawa
Scientific Director
Institute of Neurosciences, Mental Health and Addiction (INMHA)
Canadian Institutes for Health Research
Dear Dr. Quirion
Re: Autism's Gold Standard Intervention and the National Autism Symposium
I am a parent of an 11 1/2 year old boy with Autism Disorder. He is profoundly autistic. By profoundly I mean that he has limited communication skills and understanding of language and does not appreciate many of the dangers presented by everyday life. He also engages, from time to time, in self injurious behavior. As a distinguished professional in Montreal neuro-research circles you may not place much weight on my assessment of my son's realities even after living with, caring for, and loving him, for 11 1/2 years. To that end let me assure you that my assessment of my son is confirmed by a Pediatric Doctor's (two in fact) and a Psychologist's assessments.
As an outspoken parent advocate on autism issues my name was rejected by your organisation as a New Brunswick community representative at the National Autism Symposium to be held on November 8 and 9. Despite that fact, I ask you to consider, and anyone of the chosen delegates to consider during this symposium, the question of whether there is a Gold Standard for autism interventions at this time. You may not understand that for parents this is a critical question. Parents of autistic children will not be spending a lot of time worrying about the next development in Montreal neuro-research circles over the next few years. We tend to focus on the well being and best interests of our children; on the best ways to enhance their development and life prospects, to make their life better for them. Parents of newly diagnosed autistic children may not understand that there is in fact a Gold Standard intervention for autism, and that time is important in obtaining that intervention for their children.
You may or may not know that several reviewing agencies over the past decade have essentially reached the conclusion that there is, despite the superficial conclusions to the contrary of some otherwise earnest professionals, a gold standard for autism intervention. From Maine to New York to California, to the office of the US Surgeon General to the advisory board of the Association for Science in Autism Treatment to a recent United Kingdom review, all such reviews consistently point to Applied Behavior Analysis as the only effective evidence based autism intervention - to date.
This past week saw two further developments. Most well known are the two reports of the American Academy of Pediatrics. One report recommended early screening for autism. The other report reviewed some interventions. This quote is taken directly from one of those AAP Reports Management of Children With Autism Spectrum Disorders
The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4
It will not receive the attention of the AAP Reports but the Province of New Scotia also release a report, Autism Treatment Program Getting Positive Results, this week on its ABA based EIBI program :
The interim results of an independent program evaluation conducted by IWK Health Centre Research Services and Dalhousie University indicates that after one year of Early Intensive Behavioural Intervention (EIBI)treatment, virtually all 27 children in the first phase of the program had significantly improved communication skills. According to tests and parental feedback, they also had improved problem-solving skills and reduced behavioural problems.
...
Many of the children were about a year and a half behind in language-development skills when they began EIBI treatment. On average, children gained more than a year's worth of language skills in the first 12 months of treatment.
The National Autism Symposium is designed to be conducted by professional "facilitators" which usually means that open, frank discussion will not take place, that the issues discussed and conclusions reached will be essentially determined in advance of the symposium. On the assumption though that there is still some room for actual candid discussion of research issues of real import to autistic children and their families I ask you to encourage your professional colleagues, and others in attendance, to consider these two recent reports, the numerous other credible reviews of autism intervention research and the hundreds of studies over 5 decades which clearly establish Applied Behavior Analysis as the Gold Standard intervention for autistic children.
Respectfully,
Harold L Doherty
Fredericton NB
cc. Dr. Barbara Beckett
Assistant Director, Ottawa
Tuesday, October 30, 2007
Autism Gold Standard Intervention - Nova Scotia ABA/IEBI Autism Program Produces Positive Reslts
This has not been a good week for those who insist that there is no consensus on a gold standard intervention for autistic children. The AAP description of ABA as an intervention with more than 5 decades of studies providing positive results for autistic children is followed by the results from a Nova Scotia IEBI/ABA study showing positive results. It's enough to give anti-ABA crusaders a real headache.Autism Treatment Program Getting Positive Results
Department of Health
October 30, 2007 12:00
A program designed to enhance social and communication skills for young children with autism spectrum disorder is providing added benefits to their families.
The interim results of an independent program evaluation conducted by IWK Health Centre Research Services and Dalhousie University indicates that after one year of Early Intensive Behavioural Intervention (EIBI)treatment, virtually all 27 children in the first phase of the program had significantly improved communication skills. According to tests and parental feedback, they also had improved problem-solving skills and reduced behavioural problems.
...
Many of the children were about a year and a half behind in language-development skills when they began EIBI treatment. On average, children gained more than a year's worth of language skills in the first 12 months of treatment.
Monday, October 29, 2007
AAP's "Other Report" Endorses ABA as Autism Treatment
Most of the autism news and blog coverage dealt with the American Academy of Pediatrics report calling for early autism screening for all children, including two screenings before age 2. Good advice. The AAP also issues a second report. However, the AAP's other report went virtually unmentioned amongst news sources, autism bloggers and neurodiversity bloggers. The second AAP report, Management of Children With Autism Spectrum Disorders, reviewed autism interventions and had this to say about ABA treatment for autism (Bold Text Highlighting added for emphasis - HLD) :
Applied Behavior Analysis
Applied behavior analysis (ABA) is the process of applying interventions that are based on the principles of learning derived from experimental psychology research to systematically change behavior and to demonstrate that the interventions used are responsible for the observable improvement in behavior. ABA methods are used to increase and maintain desirable adaptive behaviors, reduce interfering maladaptive behaviors or narrow the conditions under which they occur, teach new skills, and generalize behaviors to new environments or situations. ABA focuses on the reliable measurement and objective evaluation of observable behavior within relevant settings including the home, school, and community. The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–40
Highly structured comprehensive early intervention programs for children with ASDs, such as the Young Autism Project developed by Lovaas35,41 at the University of California Los Angeles, rely heavily on discrete trial training (DTT) methodology, but this is only one of many techniques used within the realm of ABA. DTT methods are useful in establishing learning readiness by teaching foundation skills such as attention, compliance, imitation, and discrimination learning, as well as a variety of other skills. However, DTT has been criticized because of problems with generalization of learned behaviors to spontaneous use in natural environments and because the highly structured teaching environment is not representative of natural adult-child interactions. Traditional ABA techniques have been modified to address these issues. Naturalistic behavioral interventions, such as incidental teaching and natural language paradigm/pivotal response training, may enhance generalization of skills.13
Functional behavior analysis, or functional assessment, is an important aspect of behaviorally based treatment of unwanted behaviors. Most problem behaviors serve an adaptive function of some type and are reinforced by their consequences, such as attainment of (1) adult attention, (2) a desired object, activity, or sensation, or (3) escape from an undesired situation or demand. Functional assessment is a rigorous, empirically based method of gathering information that can be used to maximize the effectiveness and efficiency of behavioral support interventions.42 It includes formulating a clear description of the problem behavior (including frequency and intensity); identifying the antecedents, consequences, and other environmental factors that maintain the behavior; developing hypotheses that specify the motivating function of the behavior; and collecting direct observational data to test the hypothesis. Functional analysis also is useful in identifying antecedents and consequences that are associated with increased frequency of desirable behaviors so that they can be used to evoke new adaptive behaviors.Early Early Screening Urged for Autism by US Pediatricians
The American Academy of Pediatrics will be recommending that all children be screened twice for autism by age 2 to allow maximum benefit from early intervention. The AAP points out early indicators of autism such as 4-month-olds not smiling at the sound of Mom or Dad's voice, babies who don't babble at 9 months, 1-year-olds who don't point to toys, or the loss of language or social skills at any age.
Conor was diagnosed 9 1/2 years ago at age 2. At that time, in New Brunswick, age 2 was an early diagnosis age for autism and we had no idea what autism was until Conor was diagnosed, initially with PDD-NOS, and as the severity of his autism became more obvious, with Autism Disorder. The early indicators for us were his failure to smile or show any response to peek a boo and other playful interaction. He had persistent fascination with sand, sifting it for lengthy periods of time but we did not find that alarming. His failure to develop any language skills by 12-14 months (other than saying the word "circle" on one occasion) was our most serious concern and we took him to our family doctor.
Our family doctor responded with the "boys develop language later" answer but we were not convinced. Our family doctor was one of those sometimes rare professionals who actually listened to our concerns though and he referred us to a pediatrician with some background in developmental disorders and after a series of tests Conor was diagnosed.
Unfortunately for Conor ABA intervention was not readily available in New Brunswick at that time. Most of the local Autism Society efforts were half day workshops on an eclectic mix of autism related topics. An activist group of parents emerged in response to the void in autism services in New Brunswick and we fought hard to get early intervention funded by the province, too late for our own children. But the benefit of those efforts will be felt by newly diagnosed autistic children in New Brunswick and that is a good thing - a very good thing.
The earlier an autism diagnosis is received, the better. And in New Brunswick today, although things are far from perfect, evidence based intervention is available for those parents who choose it for their child - if they get an early diagnosis.
Sunday, October 28, 2007
National Autistic Society Calls for Realistic Autism Awareness
EDITOR's NOTE: Edited as per commentary received from 'Amused'
A badly needed breeze of fresh air and common sense is blowing westward across the Atlantic from the UK's National Autistic Society. In its Think Differently campaign the National Autistic Society UK is pointing out a lack of public knowledge about the realities of autism. Public belief that all autistic persons possess Rain Man or savant skills may be preventing autistic persons from accessing needed services.
"such a widespread belief could be detrimental to the vast majority of people with autism who do not have such special abilities and are struggling with significant communication problems.
A badly needed breeze of fresh air and common sense is blowing westward across the Atlantic from the UK's National Autistic Society. In its Think Differently campaign the National Autistic Society UK is pointing out a lack of public knowledge about the realities of autism. Public belief that all autistic persons possess Rain Man or savant skills may be preventing autistic persons from accessing needed services.
"such a widespread belief could be detrimental to the vast majority of people with autism who do not have such special abilities and are struggling with significant communication problems.
It is estimated that one in 100 people in Wales has an autism spectrum disorder.
NAS Cymru, which launches a major campaign today, said that there is a lack of public understanding and awareness about what it really means to live with autism and autism spectrum disorders."
Sadly, even while organizations like the UK National Autistic Society try to offer the public a more realistic understanding of autism, some persons and organizations still try to obscure those often hard realities. While almost all parents find joy in their children, autistic or not, there are actually some parents, professionals, and high functioning autistic persons hard at work, trying to convince the world that we should find joy in autism, a serious neurological disorder. Fortunately, parents, family members and responsible professionals for the most part are not buying into such nonsense and are fighting hard to obtain services and a better life for their autistic loved ones, children, youths and adults.Autism Society Ladies Night Fundraiser at Roblynn Home Hardware Oromocto
Autism Society New Brunswick Fundraiser
Roblynn Home Hardware Building Centre & Home Furniture Oromocto is having a
"Ladies Night" on Wednesday, November 7th from 7:00-9:00 pm!
The night is exclusively for ladies and it will feature decorating techniques with Home Hardware's creative director Bev Bell, entertaining ideas, demonstrations, food tasting, shopping, door prizes and more!
The store will close at our usual time at 6:00pm. Then, our doors will reopen for ladies only at 7:00pm.
Tickets for this event are $5.00 and can be purchased at our store, from the
Autism Society NB (357-2104 Nancy, 357-5526 Tamara) and participating businesses.
All proceeds will go to support the Autism Society NB.
All proceeds will go to support the Autism Society NB.
Tickets will also be available for purchase at the door the evening of our event.
With the purchase of a ticket, the ladies will be able to shop tax free on regular priced product store wide and they will be eligible for all door prizes!
Autistic Children Lost On Waiting Lists In Canada's Autism Wasteland
In Waiting list for help is long the Leader-Post this weekend reports on the autistic children getting lost on the waiting lists in Saskatchewan, Canada's Autism Wasteland. The Leader-Post reports that Saskatchewan is the only province in Canada without a comprehensive treatment program for autistic children. At the Autism Resource Centre in Regina one child has been on a waiting list for services for 2 1/2 years and is still number 66 from the top. Once at the top of the list, a child will receive a program plan and some support services but no treatment program. The extremely valuable early years development time is being lost due to government indifference.The school years are no different in Canada's Autism Wasteland where the Saskatchewan government nonchalantly relies on the approach that schools are expected to provide all students' needs from special education funding - without the funding and trained personnel to provide autism specific educational assistance to autistic children. The result - autistic students - even non verbal autistic students - are dumped in the mainstream classrooms without proper help.
What is it in the air or the water in Saskatchewan that has caused its political and civil service leadership to be so indifferent to the needs of autistic children? How can they just ignore the needs of vulnerable children?
It is not simply a money issue. New Brunswick is on a similar economic and population footing as Saskatchewan but much more has been done here for our autistic children and much more continues to be done.
It is not like the Saskatchewan leadership can rely on ignorance as an excuse. With internet communications today it is impossible for any conscious, and conscientious, leader to pretend that they do not know that 1 in 150 children in their jurisdiction will be diagnosed with this neurological disorder.
It appears that, apart from calloused indifference, the explanation for Saskatchewan's inaction may lie in proximity to Canada's wealthiest province - Alberta. The much healthier funding for autism services in Alberta has resulted in some Saskatchewan families moving next door to obtain treatment for their autistic children.
Why is Saskatchewan Canada's Autism Wasteland? Is it possible that the Saskatchewan leadership is simply leaving it to their Alberta neighbors to deal with? It certainly looks that way.
Saturday, October 27, 2007
No Autism Talk in Saskatchewan Election
Saskatchewan's Leader Post is covering autism this weekend, including profiling some autistic children and their families and notes that in Canada's Autism Wasteland the politicians are remaining silent on autism during the Saskatchewan election with none of the parties featuring an autism plank in their party platforms.
The lack of discussion of autism issues is featured in Autistic children get lost in election shuffle an article which also features SASKFEAT's Lisa Simmermon, herself the mother of an autistic child and a long time autism advocate. The provincial politicians in Saskatchewan are using their own delay and neglect of autistic children as an excuse for not being in a position to provide autism services, using the standard, "we have to consult the stakeholders", lines to explain why they are not in a position to start implementing autism specific programs.
We went through that song and dance years ago in New Brunswick when the Interdepartmental Committee on autism services took 18 months to report that there were few autism specific services in New Brunswick. That report then went unread by the lead minister on the Committee, then Health Minister Elvy Robichaud for almost a year.
In another flashback moment, a Kim Campbell moment, the Leader-Post reports that Lisa Simmermon was told by one provincial politician that "an election is not a time to comment on government services." Yeah, right.
Autism Research Conference in Wales November 9
An autism research conference, open to the public, including parents? A list of scheduled speakers and topics published in advance of the conference? Yes, the Inaugural Autism Research Conference Wales will be taking place at Cardiff on November 9 co-hosted by Autism Cymru, Wales’ national charity for autism and Autism Speaks. Speakers, including Professor Simon Baron-Cohen, Professor Anthony Bailey, Professor Anthony Monaco, Professor Martin Raff, Dr Dawn Wimpory, Professor Mark Johnson, Professor Declan Murphy, Lois Grayson, Professor Martin Knapp and Dame Stephanie Shirley will be discussing the latest in autism research developments.
Meanwhile, back in Canada, the CIHR will also be holding an Autism Research Symposium in Toronto on November 8 and 9. This event is by invitation only, with no list of speakers and no list of topics to be discussed. Only in Canada you say? Pity!
Friday, October 26, 2007
Disturbing Death of Tiffany Pinckney
Tiffany Pinckney was a 23 year old autistic woman who was severely mentally challenged and could not care for herself. Tiffany Pinckney was a truly low functioning autistic person who depended on the care of her adoptive sister for support, a sister who now stands trial in Toronto for criminal negligence causing death and failure to provide the necessaries of life. She literally starved to death while in the "care" of her adoptive sister.
The Toronto Star in, , continues its coverage of this gut wrenching story that may be too difficult for some readers to stomach. I believe it is important that we all read this story though and understand that there are other equally challenged autistic people out there who need care as Tiffany needed care. We must all be vigilant to ensure that they receive that care.
The Toronto Star in, , continues its coverage of this gut wrenching story that may be too difficult for some readers to stomach. I believe it is important that we all read this story though and understand that there are other equally challenged autistic people out there who need care as Tiffany needed care. We must all be vigilant to ensure that they receive that care.
CIHR Autism "Partnerships" and "Community Building" LOL
In invitations to its hand picked delegates to the "National" Autism Symposium scheduled for November 8 and 9 in Toronto the CIHR bragged that the symposium was "above all ... an exercise in community building". On the CIHR web site the claim is made that:
Partnerships
From its beginning, CIHR has developed a very broad, inclusive approach to partnership. The multidisciplinary research environment we encourage helps to bring together a wide variety of organizations. Partner organizations include other federal government departments and agencies, provincial funding agencies and relevant provincial and territorial departments, health charities, non-governmental organizations, industry, as well as international organizations.
The CIHR then goes on to elaborate on its philosophy of partnering:
About Partnerships
While working in partnership has many benefits, there also are responsibilities to bear in mind. Partnerships must be: Based on the ethical principles that guide all CIHR activities, Free of conflicts of interest and Operated with managerial transparency and public accountability. Successful partnerships are based on people working well together, which require flexibility, trust and understanding.
How does the CIHR demonstrate its commitments to community building, to a broad, inclusive approach to partnerships, to transparency and public accountability, and to trust and understanding?
By deciding on behalf of the autism communities in Canada who will represent them at the National Autism Symposium. By bypassing the provincial autism societies and FEAT organizations, and in some cases rejecting names that these organizations put forth, by concealing from the public and the media any information whatsoever about who would be attending the conference or the list of scheduled speakers or topics.
The distinguished persons who are organizing the CIHR National Autism Symposium may be good scientists, or may have been before they became bureaucrats and lobbyists for specific perspectives about autism and autism research, but they are lousy "community builders" and they are not even trying to be transparent and accountable. The CIHR bureaucrat/scientists may be working together with some people but it is not the parent driven autism societies in Canada. And trust is clearly not a part of the CIHR diet.
The CIHR organizers are hiding in their offices and are hiding their agendas. The proposed National Autism Symposium is, by any measure, a failure before it begins. It is a waste of government funds. And it absolutely will not reflect the interests of the community which it has ignored and insulted .
By deciding on behalf of the autism communities in Canada who will represent them at the National Autism Symposium. By bypassing the provincial autism societies and FEAT organizations, and in some cases rejecting names that these organizations put forth, by concealing from the public and the media any information whatsoever about who would be attending the conference or the list of scheduled speakers or topics.
The distinguished persons who are organizing the CIHR National Autism Symposium may be good scientists, or may have been before they became bureaucrats and lobbyists for specific perspectives about autism and autism research, but they are lousy "community builders" and they are not even trying to be transparent and accountable. The CIHR bureaucrat/scientists may be working together with some people but it is not the parent driven autism societies in Canada. And trust is clearly not a part of the CIHR diet.
The CIHR organizers are hiding in their offices and are hiding their agendas. The proposed National Autism Symposium is, by any measure, a failure before it begins. It is a waste of government funds. And it absolutely will not reflect the interests of the community which it has ignored and insulted .
Thursday, October 25, 2007
Biological Evidence That Low Functioning Autism Is A Different Disorder Than High Functioning Autism and Aspergers
One of the current autism debates on the internet is over the distinction between low functioning and high functioning autism. Mere mention of the differences between lower functioning and higher functioning autism are enough to attract condemnation from some quarters. The indisputable fact that some autistic persons have little or no communication ability, or ability to understand abstract concepts, is denied vigorously by some. Neurodiversity icons like Laurent Mottron and Michelle Dawson, who actively lobby against government provision of ABA services for autistic children in Canada, the Quirks and Quarks duo, also devise studies to "prove" that even low functioning autistic persons actually have hidden, unappreciated, intelligence. Apart from the communication deficits and lack of real world skills of low functioning autistic persons there is now also biological evidence of the very real differences between these autism disorders.
Researchers Christine Wu Nordahl, Donna Dierker, Iman Mostafavi, Cynthia M. Schumann, Susan M. Rivera, David G. Amaral, and David C. Van Essen tested for cortical shape abnormalities using surface-based morphometry across a range of autism spectrum disorders. The results reported in Cortical Folding Abnormalities in Autism Revealed by Surface-Based Morphometry, The Journal of Neuroscience, October 24, 2007, 27(43):11725-11735; ; doi: oi:10.1523/JNEUROSCI.0777-07.2007 are summarized in the online abstract.
Using structural MRI imaging maps were created which showed that a low functioning autism group had a prominent shape abnormality centered on the pars opercularis of the inferior frontal gyrus that was associated with a sulcal depth difference in the anterior insula and frontal operculum. The high-functioning autism group had bilateral shape abnormalities similar to the low-functioning group, but smaller in size and centered more posteriorly, in and near the parietal operculum and ventral postcentral gyrus. Individuals with Asperger's syndrome had bilateral abnormalities in the intraparietal sulcus that correlated with age, intelligence quotient, and Autism Diagnostic.
Evidence of biological differences between low functioning and high functioning autism could have many implications and raise many questions. One important question such differences, and the drastic differences in communication and intellectual levels raise is whether very high functioning autistic persons, persons capable of making submissions to legal and political bodies, attending conferences and chatting with CNN interviewers have any legitimate basis on which to speak on behalf of lower functioning autistic persons who can not speak for themselves.
These high functioning autistic persons do not share the same life realities and ... they do not share the same disorder as low functioning autistic persons. Unless they are a parent, a caregiver or legal representative of autistic persons it is not clear that they have any inherent right to speak on behalf of lower functioning autistic persons. And certainly not to lobby against provision of services for those less fortunate individuals.
Evidence of biological differences between low functioning and high functioning autism could have many implications and raise many questions. One important question such differences, and the drastic differences in communication and intellectual levels raise is whether very high functioning autistic persons, persons capable of making submissions to legal and political bodies, attending conferences and chatting with CNN interviewers have any legitimate basis on which to speak on behalf of lower functioning autistic persons who can not speak for themselves.
These high functioning autistic persons do not share the same life realities and ... they do not share the same disorder as low functioning autistic persons. Unless they are a parent, a caregiver or legal representative of autistic persons it is not clear that they have any inherent right to speak on behalf of lower functioning autistic persons. And certainly not to lobby against provision of services for those less fortunate individuals.
More Conor Trail Fun
One of my favorite activities is trail walking with Conor. It is a beautiful, fresh, safe and stress free time. The exercise benefits aren't really a major consideration. The chance to enjoy the fresh air and the beauty of nature without traffic or the stress, for Conor, of too much noise add up to a lot of fun - together with my buddy.
Wednesday, October 24, 2007
Autism Treatment Forum: Early ABA Based Intensive Intervention Is the Best Practice Treatment For Autism Disorders
In an open forum held Monday at Rutgers University, Douglass Developmental Disabilities Center representatives discussed current information about autism spectrum disorders treatment in an effort to close the gap between knowledge in research literature and what is taking place in the field.
The forum aimed at dispelling some autism treatment myths currently circulating. At Rutgers the DDDC emphasised the importance of early intensive intervention based on applied behavior analysis or ABA :
Starting in 2007 the DDDC launched the Early Intervention Program. This created a program where researchers agree an early intensive and coordinated program based on applied behavior analysis, also known as ABA, is the best practice treatment, Weiss said.
ABA dispels one of the most common misconceptions: That a child will learn if you give him or her more time.
"If children on the spectrum are going to learn to talk, I don't think it was because we gave them time," Demiri said. "Children on the spectrum do not acquire the language naturally, they need to be taught it. Instead of giving children time to learn to talk, we want to give them opportunities to learn."
Research shows the more treatment the child receives, the better the chances the child will develop typically. The early treatment program consumes up to 40 or more hours per week of the child's time.
The amount of time the treatment consumes debunks another common misconception: That autistic children cannot endure such intensive treatment. "We've actually found that a lot of our children can tolerate it," Demiri said. "In our experience, children with less hours have made the least amount of gains and have had the most difficulty retaining skills."
Tuesday, October 23, 2007
New Autism Genetic Data Released By John Hopkins and Autism Consortium
More detailed autism genetic data was released yesterday in a coordinated effort by the Autism Consortium and Johns Hopkins' McKusick-Nathans Institute of Genetic Medicine. As stated in the Autism Consortium and John Hopkins press releases the data was released to the world research community prior to publication in an effort to speed up research into causes of and cures for autism.
It is also interesting that parent driven organizations like Autism Speaks have been directly involved in the organization of this massive effort. The distrust of parent autism advocates and autism advocacy organizations demonstrated by Canada's CIHR does not seem to be shared by similar American agencies. The Autism Consortium DNA samples for the genome wide scans of DNA variation were provided by the Autism Genetic Resource Exchange (AGRE), a program of Autism Speaks.
The Autism Consortium consists of researchers from from Beth Israel Deaconess Medical Center, Boston Medical Center, Boston University, Boston University School of Medicine, Broad Institute of MIT and Harvard, Cambridge Health Alliance, Children’s Hospital Boston, Harvard University, Harvard Medical School, Massachusetts General Hospital, Massachusetts Institute of Technology, McLean Hospital and Tufts-New England Medical Center. The Autism Consortium web site can be found at www.autismconsortium.org. More information about the Johns Hopkins' McKusick-Nathans Institute of Genetic Medicine can be found at http://www.hopkinsmedicine.org/geneticmedicine/
From the Autism Consortium press release
Autism Consortium releases data on genes involved in autism to researchers worldwide
BOSTON – OCTOBER 22, 2007 – The Autism Consortium, a group of researchers, clinicians and families dedicated to radically accelerating research and enhancing clinical care for autism, announced today that it has completed the first genome scan for Autism Spectrum Disorders (ASD) through its Autism Gene Discovery Project and has released the reference data set to a database that autism researchers around the world can use. The scan was conducted using new, high resolution technology developed by Affymetrix on genetic data from more than 3,000 children with ASD and their families.
It is also interesting that parent driven organizations like Autism Speaks have been directly involved in the organization of this massive effort. The distrust of parent autism advocates and autism advocacy organizations demonstrated by Canada's CIHR does not seem to be shared by similar American agencies. The Autism Consortium DNA samples for the genome wide scans of DNA variation were provided by the Autism Genetic Resource Exchange (AGRE), a program of Autism Speaks.
The Autism Consortium consists of researchers from from Beth Israel Deaconess Medical Center, Boston Medical Center, Boston University, Boston University School of Medicine, Broad Institute of MIT and Harvard, Cambridge Health Alliance, Children’s Hospital Boston, Harvard University, Harvard Medical School, Massachusetts General Hospital, Massachusetts Institute of Technology, McLean Hospital and Tufts-New England Medical Center. The Autism Consortium web site can be found at www.autismconsortium.org. More information about the Johns Hopkins' McKusick-Nathans Institute of Genetic Medicine can be found at http://www.hopkinsmedicine.org/geneticmedicine/
From the Autism Consortium press release
Autism Consortium releases data on genes involved in autism to researchers worldwide
BOSTON – OCTOBER 22, 2007 – The Autism Consortium, a group of researchers, clinicians and families dedicated to radically accelerating research and enhancing clinical care for autism, announced today that it has completed the first genome scan for Autism Spectrum Disorders (ASD) through its Autism Gene Discovery Project and has released the reference data set to a database that autism researchers around the world can use. The scan was conducted using new, high resolution technology developed by Affymetrix on genetic data from more than 3,000 children with ASD and their families.
“Today’s release of genetic and phenotypic data on autism marks a significant achievement for the autism research community,” said Thomas Insel, Ph.D., Director of the National Institute for Mental Health. “Progress in finding the causes and cures for autism spectrum disorders rests in large part on improving the rapid access and sharing of data and resources That the Consortium is making the data available to the scientific community even before its own researchers have fully analyzed the information, demonstrates their high degree of commitment to and leadership in advancing autism research.”
Along with complementary data generated by Dr. Aravinda Chakravarti at Johns Hopkins and provided to the NIMH this week, these data provide the most detailed look to date at the genetic variation patterns in families with autism.
From the John Hopkins Press Release:BALTIMORE, Oct. 22 (AScribe Newswire) -- Researchers at Johns Hopkins' McKusick-Nathans Institute of Genetic Medicine today are releasing newly generated genetic data to help speed autism research. The Hopkins data, coordinated with a similar data release from the Autism Consortium, aims to help uncover the underlying hereditary factors and speed the understanding of autism by encouraging scientific collaboration. These data provide the most detailed look to date at the genetic variation patterns in families with autism.
"Autism is a difficult enough genetic mystery for which we need all of the best minds and approaches to help unravel the role of genes in this neuropsychiatric illness," says Aravinda Chakravarti, Ph.D., director of the Center for Complex Disease Genomics at Hopkins.
Chakravarti and his team analyzed whole genomes from 1,250 autistic individuals, their siblings and parents; these samples were collected across the United States by many researchers under the aegis of the National Institute of Mental Health, part of the National Institutes of Health. Mark Daly, Ph.D., a senior associate member of the Broad Institute of Massachusetts Institute of Technology and Harvard, is part of the Autism Consortium which released data acquired collected similarly from 3,000 individuals who are either affected by autism spectrum disorders (ASD) or are family members of individuals with autism.
"We're releasing raw genotype data so that other qualified researchers can take a look at it even as we're still beginning our own analysis," says Daly.
"It is really something of a landmark to have pre-publication data from our laboratories available to autism researchers. We are doing so in the spirit of the human genome project where such data releases were critical to progress long before final results were available. We are carefully looking at our collaborative findings as we continue to search for definitive information about which genes are important in causing autism spectrum disorders," says Chakravarti, who has collaborated with Daly for many years. "We hope to identify the most likely candidates over the next few months."
Monday, October 22, 2007
Neurodiversity Bloggers Still Buzzing Over Jenny
In Jenny McCarthy Knocks Over Neurodiversity Hornet's Nest I commented on the intense reaction by Neurodiversity bloggers to Jenny McCarthy's autism advocacy, advocacy prompted by her own child's autism and her efforts to treat or cure her child of that autism. Although I do not share her views about autism treatments I am amazed at the ferocious reaction her comments have generated amongst Neurodiversity bloggers. Autism Vox and Orac are two Neurodiversity bloggers who just can't seem to get her out of their minds with each posting yet again about this well known autism mother who has dared to speak publicly about autism without reading from the NeuroDiversity Manual.
Whole Picture Autism Acceptance
Parents and other autism advocates seeking to help autistic children and adults face many obstacles, not the least of which is a distorted "autism acceptance" movement. This distorted version of autism acceptance promotes the view that autism is a good thing. While persons with this perspective may pay lip service to the fact that autism is a neurological disorder, a disability, most members of this movement will not talk about the harsher realities of autism, particularly classic autism disorder. They will disparage in the harshest terms persons who talk about these realities. Whether it is called "natural variation" "neurodiversity" or "joy of autism" the autism acceptance advocates do anything but accept autism. What they do is tear the autism picture in half and accept and embrace the pretty parts of the autism picture and attack and disparage anyone who talks about the negative realities of autism. The self proclaimed autism acceptance advocates are deceiving themselves when they talk about accepting autism. They are really accepting only the pretty half of the picture not the whole picture of autism.
Most parental autism advocates yearn for whole picture autism acceptance by society. They wish they could take their children into public venues without stares and rude remarks when their children, overwhelmed by the environment around them, suffer meltdowns. They fight for autism specific health and education interventions for their children. They fight for treatment and cure for their children because they refuse to delude themselves about the nature of their children's neurological disorder. They accept their children's autism ... the whole picture and they refuse to be passive about the negative parts of the picture. These whole picture autism acceptance parents fight to help their autistic children that they love so dearly. They do not surrender to the lure of sweet surrender. They stand up and fight for their children.
Parents who accept the whole picture of their children's autism do not let a very high functioning autistic stranger tell them over the internet how they should raise, care for and ... help their autistic children. They seek to help their children overcome their deficits and for this they are reviled by self proclaimed autism acceptance advocates. They are fighting for their children because they love them ... and they accept their children's autism ... not part of the autism picture ... not just the pretty parts ... but the whole picture. Accepting autism means accepting the whole picture of autism .. including the parts that aren't so pretty.. the parts that don't get mentioned by anti-ABA crusaders in their Supreme Court of Canada and CBC Radio appearances.
Most parental autism advocates yearn for whole picture autism acceptance by society. They wish they could take their children into public venues without stares and rude remarks when their children, overwhelmed by the environment around them, suffer meltdowns. They fight for autism specific health and education interventions for their children. They fight for treatment and cure for their children because they refuse to delude themselves about the nature of their children's neurological disorder. They accept their children's autism ... the whole picture and they refuse to be passive about the negative parts of the picture. These whole picture autism acceptance parents fight to help their autistic children that they love so dearly. They do not surrender to the lure of sweet surrender. They stand up and fight for their children.
Parents who accept the whole picture of their children's autism do not let a very high functioning autistic stranger tell them over the internet how they should raise, care for and ... help their autistic children. They seek to help their children overcome their deficits and for this they are reviled by self proclaimed autism acceptance advocates. They are fighting for their children because they love them ... and they accept their children's autism ... not part of the autism picture ... not just the pretty parts ... but the whole picture. Accepting autism means accepting the whole picture of autism .. including the parts that aren't so pretty.. the parts that don't get mentioned by anti-ABA crusaders in their Supreme Court of Canada and CBC Radio appearances.
Sunday, October 21, 2007
Autism Quote of the Decade - 2nd Place - MADSEC Autism Task Force Report ABA Conclusion
Conclusions
There is a wealth of validated and peer-reviewed studies supporting the efficacy of ABA methods to improve and sustain socially significant behaviors in every domain, in individuals with autism. Importantly, results reported include “meaningful” outcomes such as increased social skills, communication skills academic performance, and overall cognitive functioning. These reflect clinically-significant quality of life improvements. While studies varied as to the magnitude of gains, all have demonstrated long term retention of gains made.
...
Over 30 years of rigorous research and peer review of applied behavior analysis’ effectiveness for individuals with autism demonstrate ABA has been objectively substantiated as effective based upon the scope and quality of science. Professionals considering applied behavior analysis should portray the method as objectively substantiated as effective. Methods of applied behavior analysis should be considered to evaluate the effectiveness of any intervention used to help individuals with autism. Researchers should continue to vigorously investigate behavioral intervention as the most promising area of research and treatment benefitting individuals with autism known today. Early interventionists should leverage early autism diagnosis with the proven efficacy of intensive ABA for optimal outcome and long-term cost benefit.
There is a wealth of validated and peer-reviewed studies supporting the efficacy of ABA methods to improve and sustain socially significant behaviors in every domain, in individuals with autism. Importantly, results reported include “meaningful” outcomes such as increased social skills, communication skills academic performance, and overall cognitive functioning. These reflect clinically-significant quality of life improvements. While studies varied as to the magnitude of gains, all have demonstrated long term retention of gains made.
...
Over 30 years of rigorous research and peer review of applied behavior analysis’ effectiveness for individuals with autism demonstrate ABA has been objectively substantiated as effective based upon the scope and quality of science. Professionals considering applied behavior analysis should portray the method as objectively substantiated as effective. Methods of applied behavior analysis should be considered to evaluate the effectiveness of any intervention used to help individuals with autism. Researchers should continue to vigorously investigate behavioral intervention as the most promising area of research and treatment benefitting individuals with autism known today. Early interventionists should leverage early autism diagnosis with the proven efficacy of intensive ABA for optimal outcome and long-term cost benefit.
- Report of the MADSEC Autism Task Force, 2000
Autism Quote of The Decade - ABA Is the Treatment of Choice
“there is no question that ABA is the treatment of choice for children presenting with autistic disorder based on over 35 years of research in the field.”
- Frank M. Gresham Ph.D., as quoted by Justice Allan in Auton et al. v. AGBC 2000 BCSC 1142 para. 52
Frank M. Gresham was a Professor and Director of the School Psychology Program in the School of Education at U.C.L.A. He was retained by the British Columbia government in their efforts to oppose medicare coverage of ABA intervention for autism by providing expert opinion evidence regarding the Lovaas studies of which he has been a long time critic.
Despite his criticisms of the Lovaas studies, and despite his status as a paid expert witness for the government opposing ABA medicare coverage for autistic children, Dr. Gresham, to his credit, acknowledged ABA as the treatment of choice for autism.
- Frank M. Gresham Ph.D., as quoted by Justice Allan in Auton et al. v. AGBC 2000 BCSC 1142 para. 52
Frank M. Gresham was a Professor and Director of the School Psychology Program in the School of Education at U.C.L.A. He was retained by the British Columbia government in their efforts to oppose medicare coverage of ABA intervention for autism by providing expert opinion evidence regarding the Lovaas studies of which he has been a long time critic.
Despite his criticisms of the Lovaas studies, and despite his status as a paid expert witness for the government opposing ABA medicare coverage for autistic children, Dr. Gresham, to his credit, acknowledged ABA as the treatment of choice for autism.
National Autism Symposium Script Released
The Script for the Harper Government's National Autism Symposium Stage Production has now been released. The auditions for parts in this staged production are closed (never having been open) . The actors pre-selected by the CIHR will test their acting skills by pretending that they are representative of provincial autism communities, whose organizations were not actually consulted and did not pick their own delegates. Actors must be able to portray real delegates earnestly engaged in discussion of autism issues. The audience will see these skilled actors pretend to arrive at the following conclusions in the final scene:
1) There is no actual increase in autism, it is a figment of our collective consciousness. The authors of one Montreal study say so.
2) There is no consensus about autism treatments, contrary to the silly beliefs of the state agencies in New York, California, Maine, the US Surgeon General, the dozens of Ph.D's and MD's who form the advisory board of the Association for Science in Autism Treatment, the researchers who contributed to the recent Cambridge University research sponsored report by Research Autism which ranked autism interventions, the hundreds of thousands of parents across North America seeking ABA services of their autistic children, and the authors of hundreds of research studies showing gains for children who received ABA.
All of these sources will be revealed in the National Autism Symposium Stage Production as having foolishly leaped to the conclusion that ABA is the treatment of choice for autism and should not be accepted as evidence of a consensus about autism treatments.
All of these sources will be revealed in the National Autism Symposium Stage Production as having foolishly leaped to the conclusion that ABA is the treatment of choice for autism and should not be accepted as evidence of a consensus about autism treatments.
These are some elements of the script which will be followed at the Stephen Harper National Autism Symposium Stage Production scheduled to be performed November 8 and 9. The full script can be found in the Harper Government Response to the Report of the Standing Senate Committee on Social Affairs, Science and Technology, Pay Now or Pay Later - Autism Families in Crisis.
Regretfully, members of organizations composed of actual Autism Families in Crisis will be unable to view the Autism Symposium Stage Production. After all this is Canada, not the US, where democracy and law require open public performances at events of importance and where actors must audition for their parts and be democratically selected by the communities they pretend to represent. And after all someone might disrupt the performance, and violate the sensitivities and human rights of the actors, by shouting out such obscenities as "Applied Behavior Analysis", "ABA" or "Medicare".
Friday, October 19, 2007
Conor Lowers the Flag
Conor lowers the New Brunswick flag at Nashwaaksis Middle School with friends Brad and Karen.
Autism Is A Disability In West Virginia Woods
The Jacob Allen story has turned out well with the 18 year old low functioning autistic teen with limited communication skills found alive 4 days after getting lost in West Virigina woods while hiking with his parents. His severely limited communication skills could have cost him his life:
Neurodiversity advocates would have the world believe that autism is not a disorder; not a disability. This incident in West Virgina puts the lie to that absurd claim. So too does the case of Tiffany Pinckney, an autistic woman who starved to death. unable to help herself, while she depended on the care of her adoptive sister. So too does the case of the 50 year old autistic woman in a Long Island residential care facility who, unable to communicate what was happening to her, was repeatedly assaulted by attendants at the facility until the assaults were caught on video.
A spokesman for the rescue effort said Allen was found in the Dolly Sods Wilderness Area about a mile from where he left his parents during a hike on Sunday.
Because he is in good health and has hiking experience, and because temperatures have not been too cold, searchers had held out hope that he had survived. But his autism prevented him from speaking and responding to calls from searchers.
Neurodiversity advocates would have the world believe that autism is not a disorder; not a disability. This incident in West Virgina puts the lie to that absurd claim. So too does the case of Tiffany Pinckney, an autistic woman who starved to death. unable to help herself, while she depended on the care of her adoptive sister. So too does the case of the 50 year old autistic woman in a Long Island residential care facility who, unable to communicate what was happening to her, was repeatedly assaulted by attendants at the facility until the assaults were caught on video.
Hopefully neuodiversity icons like Professor Morton Ann Gernsbacher and Dr. Laurent Mottron will take time from studying high functioning autistic persons to give some thought to the more severely autistic persons who can not function in the real world and who are dependent on the good will of others to live. Maybe then they will not participate in creating the potentially dangerous myth that autism is not a disability.
Autistic Teen Found Alive In West Virgina!
Jacob Allen, a severely autistic teen with limited communication skills was found alive in the woods of West Virgina 4 days after getting lost while hiking with his parents!
Thursday, October 18, 2007
And Still ANOTHER TASER Death
Amnesty International is again calling for a moratorium on police TASER use after the second death by a victim of a TASER jolt in Canada in the past week.
I wonder if an official investigation will conclude THIS TIME that the TASER jolt which immediately preceded the man's death might have contributed to that death?
Nah. It can't be anything that obvious. There must be another explanation.
I wonder if an official investigation will conclude THIS TIME that the TASER jolt which immediately preceded the man's death might have contributed to that death?
Nah. It can't be anything that obvious. There must be another explanation.
Autistic Teen Missing in W Va , Let Us Hope He Is Found Safe
All parents fear an event like this one. I have experienced some of the fear of the family in this story although for nowhere near as long a time. When your child has little or no communication skills and restricted intellectual capacity the fears are extremely intense.
Let us all hope that Jacob Allen is found safe and in good health.
Autistic teen still missing in W. Va.
Family, rescuers worry that 3 days have now gone by
Let us all hope that Jacob Allen is found safe and in good health.
Autistic teen still missing in W. Va.
Family, rescuers worry that 3 days have now gone by
Thursday, October 18, 2007
LANEVILLE, W.Va. -- Hundreds of people searching for an autistic teenager lost in the woods of West Virginia tried to keep their spirits up yesterday as a third full day passed with little sign of 18-year-old Jacob Allen.
Mr. Allen, of Morgantown, wandered away from his parents during a Sunday afternoon hike in the Dolly Sods Wilderness Area. He cannot communicate verbally and has the mental capacity of a 3- or 4-year-old child.
"Every minute that passes is harder and harder," said his 22-year-old sister, Brittany. "I just feel like I'm sitting there waiting for the phone to ring."
Time is critical because "the odds of a successful rescue go down significantly after 72 hours," said Greg Davenport, of Stevenson, Wash., who has written six books on survival. That deadline lapsed yesterday afternoon.
Tuesday, October 16, 2007
New Brunswick Human Rights Commission Guidelines Discriminate Against Autistic Students
The New Brunswick Human Rights Commision has adopted new guidelines to accommodating students with a disability in New Brunswick schools - New Brunswick Human Rights Commission, Guideline on Accommodating Students with a Disability. Unfortunately for some New Brunswick students with Autism Disorder the guidelines themselves fail to accommodate their disability and in doing so discriminate against some students with profound Autism Disorder. The guidelines fail to accommodate by creating a "norm" or presumption in favor of mainstream classroom placement even though, for some autistic students, the mainstream classroom in not an appropriate place of learning, can be overwhelming to environmentally sensitive autistic children and can be result in dangerous, self injurious behavior.
When the NB Human Rights Commission says that mainstream classroom placement is the norm education officials will quite understandably feel that it is necessary to place all children in the classroom. Essentially this "norm" will push students into the classroom who should be in a different, quieter, less busy location within the school in order for them to learn, and to not be overwhelmed. For those school districts who do not want to spend the money from their budget to accommodate more individualized instruction necessary for some autistic students placing them in the classroom without individualized instruction by autism specific trained Teacher Aides will be a cheap solution, as it has been in the past. And the presumption or norm created by the HRC will assist them in justifying their decision.
New Brunswick schools have, over the past 30 years, been dominated by an extreme inclusion model which saw all children dumped in the mainstream classroom without proper support and without regard for the individual conditions of some children with disabilities such as some severely autistic children. The result has been disruption in the classroom, failure to learn by some children, and in some cases, including my profoundly autistic son, dangerously self injurious behavior. Fortunately, over the past several years, the rigid ideological approach of the classroom inclusion for all philosophy has given way in some instances to an evidence based approach which requires examination of what actually works for each child. Educate the child in the way he or she learns best, in the environment in which he or she learns best. An evidence based approach is consistent with human rights policies by requiring an examination of the disability issues presented by the individual student. This evidence based approach was promised by the Province of New Brunswick Inter-Departmental Committee that examined autism services in New Brunswick between 1999 and 2001.
The IDC Report issued in November 2001, disclosed the already known fact that there were at that time very few autism specific services available in New Brunswick. The most significant accomplishment of the IDC Report was that it recommended an evidence based approach to provision of autism services. The three departments that sat on the IDC were Health, Family Services and .... Education. In fact, since that time there have been some to an evidence based approach being adopted in some New Brunswick schools.
My own son, profoundly autistic, was removed from the mainstream classroom, at our request, after he repeatedly came home from school with self inflicted bite marks on his hands and wrists. He was overwhelmed by the classroom. To the full credit of school, district, and Department officials they looked at the evidence and agreed to place Conor in a separate room for his instruction for most of the day. The education officials accommodated my son's disability by looking at his actual condition and educating him in an environment suitable for him in light of the realities of his autism disorder.
During the MacKay Review of Inclusive Education Autism Society NB presented a position paper for educating autistic students which called for an evidence based approach. Teaching children how and where they learn best in light of their actual condition. As one of the autism representatives I spoke on numerous occasions about the need for an evidence based approach for autistic students. For some autistic students the mainstream classroom is the appropriate learning environment. For others, including my son, it is not. This evidence based approach is supported by research including Mesibov and Shea (1996):
The concept of full inclusion is that students with special needs can and should be educated in the same settings as their normally developing peers with appropriate support services, rather than being placed in special education classrooms or schools. According to advocates the benefits of full inclusion are increased expectations by teachers, behavioral modeling of normally developing peers, more learning, and greater selfesteem. Although the notion of full inclusion has appeal, especially for parents concerned about their children's rights, there is very little empirical evidence for this approach, especially as it relates to children with autism. This manuscript addresses the literature on full inclusion and its applicability for students with autism. Although the goals and values underlying full inclusion are laudable, neither the research literature nor thoughtful analysis of the nature of autism supports elimination of smaller, highly structured learning environments for some students with autism.
This information was present throughout the Mackay Inclusion review process. In one session I attempted, along with ASNB Education Rep Dawn Bowie, to speak specifically about autism issues and the need for an evidence based approach by which autistic students are educated in a location, whether it be in the mainstream classroom or elsewhere, according to the realities of their individual conditions. My comments were met dismissively by a New Maryland school official who asserted that we were not there to talk about autism. They were also met with angry opposition by New Brunswick Human Rights Commission Chair Gordon Porter who was present and who told me and Mrs. Bowie that "you people should be thankful for what you have ". Mr. Porter then proceeded to talk about how bad it was in the Special Education system in New Brunswick many years ago and how the inclusion model was a very substantial improvement.
Given Mr. Porter's prominent role in putting the inclusion model in place in New Brunswick, and given his strong personal views, it is not surprising that the Human Rights Commission which he chairs has issued Guidelines which create a presumption in favor of classroom inclusion for all students. It is also not surprising in that the New Brunswick Association for Community Living was tasked by the Department of Education with holding professional development days for New Brunswick teachers to explain the recommendations of the MacKay Inclusion Review. The NBACL is a fierce advocate for the total inclusion model. The NBACL has paid staff who persistently lobby for the full inclusion model. An example are the awards they hand out to teachers in New Brunswick who best demonstrate inclusion practices in New Brunswick schools. The NBACL, in hosting the inclusion professional development days for teachers asked Gordon Porter to be the keynote speaker at the event. A request by ASNB to speak at the event, to speak with the teachers about autism, and the need for an evidence based approach, was rejected by the NBACL.
Mr. Porter and NBACL are both strongly committed to the full inclusion model and that commitment to a philosophy of classroom inclusion for all is reflected in the norm espoused by the new Human Rights Commission guidelines. The promotion of that norm by the Human Rights Commission will put even more pressure on teachers and school officials to put all students in the classroom. The promotion of that norm is contrary to the evidence based approach promised for autistic persons in the IDC Report and it is contrary to the duty to accommodate the individual differences of students with disabilities, particularly some students with profound autism disorder.
It was precisely that failure to accommodate individuals with disabilities that led Yude Henteleff QC to describe the full inclusion model as discriminatory in a paper he presented to the Canadian Assocation for Community Living in 2004. Mr. Henteleff has represented individuals with a variety of different disabilities including autism, deaf and hard of hearing,
aspergers, Tourette's syndrome, attention deficit hyperactivity disorders, developmental
disability, physical disability and the learning disabled. He has been the legal counsel for the Association of Parents of Children with Autism in Manitoba and has been associated with the Learning Disabilities Association of Canada. In The Fully Inclusive Classroom Is Only One Of The Right Ways To Meet The Best Interests Of The Special Needs Child Mr. Henteleff argued that the full inclusion approach is in itself discriminatory by failing to accommodate individual disability based differences. At page 2 he states:
It should be abundantly clear, having in mind the foregoing statistics, that for children
who suffer from emotional, mental, behavioural, cognitive, sensory, physical, expressive
language, visual and auditory difficulties (and often a combination of some of the foregoing), it is simply not possible to meet their diverse needs in one environment. One shoe simply cannot fit all.
Indeed, total inclusion is a discriminatory concept because it limits the environmental
choices, which groups of children and youth with differing difficulties have the right to make in their best interests.
I am completely dedicated to the public school system. I believe it is an integral part of
whom and what we are as Canadians living in a democratic society. That means a place where all children are welcomed - regardless of their gender, sexual orientation, ethnicity, colour, religion, physical or mental condition. In other words, the public school system is a place where the social contract guaranteed by the Charter and Human Rights Codes is fulfilled. That social contract is that every individual is entitled to equality and to be free from discrimination.
However, schools being a welcoming place regardless of gender, ethnicity, colour,
religion, physical or mental condition, namely inclusivity, is far different from what is described as "full inclusion" in the general classroom. Full inclusion falls far short of guaranteeing equality.
Mr. Porter, the Commission, and the NBACL which all advocate for full inclusion will argue that establishing a norm does not mean that all children must be kept in the classroom at all times and that their disabilities are accommodated. Their argument fails to take into account the pressure this will put on parents and educators to place children in the classroom first and to ask questions later, contrary to an evidence based approach and contrary to an accommodation of the child's real needs. Some parents, will not have a professional background to rely upon when dealing with the education system. Many are talked down to by educators. When told that the classroom is the right option for their child they not be inclined, or able, to challenge that position. With the Human Rights Commission creating a presumptive norm in favor of the classroom inclusion option there will be no realistic choice for the parents to consider in deciding how, and where, their child, severely autistic or otherwise should be educated.
The full inclusion model limits choice as Mr. Henteleff points out. The persistent efforts by the NBACL and its inclusion lobbyists to promote the full inclusion model has in practice limited choice for some parents and their autistic children who might be better served in a quieter environment outside the mainstream classroom. Mr. Porter, who has been a significant part of that push for full inclusion, and who is now the Chair of the New Brunswick Human Rights Commission, has presided over Commission guidelines which will reinforce the presumption of full classroom inclusion - to the detriment of some autistic children.
When the NB Human Rights Commission says that mainstream classroom placement is the norm education officials will quite understandably feel that it is necessary to place all children in the classroom. Essentially this "norm" will push students into the classroom who should be in a different, quieter, less busy location within the school in order for them to learn, and to not be overwhelmed. For those school districts who do not want to spend the money from their budget to accommodate more individualized instruction necessary for some autistic students placing them in the classroom without individualized instruction by autism specific trained Teacher Aides will be a cheap solution, as it has been in the past. And the presumption or norm created by the HRC will assist them in justifying their decision.
New Brunswick schools have, over the past 30 years, been dominated by an extreme inclusion model which saw all children dumped in the mainstream classroom without proper support and without regard for the individual conditions of some children with disabilities such as some severely autistic children. The result has been disruption in the classroom, failure to learn by some children, and in some cases, including my profoundly autistic son, dangerously self injurious behavior. Fortunately, over the past several years, the rigid ideological approach of the classroom inclusion for all philosophy has given way in some instances to an evidence based approach which requires examination of what actually works for each child. Educate the child in the way he or she learns best, in the environment in which he or she learns best. An evidence based approach is consistent with human rights policies by requiring an examination of the disability issues presented by the individual student. This evidence based approach was promised by the Province of New Brunswick Inter-Departmental Committee that examined autism services in New Brunswick between 1999 and 2001.
The IDC Report issued in November 2001, disclosed the already known fact that there were at that time very few autism specific services available in New Brunswick. The most significant accomplishment of the IDC Report was that it recommended an evidence based approach to provision of autism services. The three departments that sat on the IDC were Health, Family Services and .... Education. In fact, since that time there have been some to an evidence based approach being adopted in some New Brunswick schools.
My own son, profoundly autistic, was removed from the mainstream classroom, at our request, after he repeatedly came home from school with self inflicted bite marks on his hands and wrists. He was overwhelmed by the classroom. To the full credit of school, district, and Department officials they looked at the evidence and agreed to place Conor in a separate room for his instruction for most of the day. The education officials accommodated my son's disability by looking at his actual condition and educating him in an environment suitable for him in light of the realities of his autism disorder.
During the MacKay Review of Inclusive Education Autism Society NB presented a position paper for educating autistic students which called for an evidence based approach. Teaching children how and where they learn best in light of their actual condition. As one of the autism representatives I spoke on numerous occasions about the need for an evidence based approach for autistic students. For some autistic students the mainstream classroom is the appropriate learning environment. For others, including my son, it is not. This evidence based approach is supported by research including Mesibov and Shea (1996):
The concept of full inclusion is that students with special needs can and should be educated in the same settings as their normally developing peers with appropriate support services, rather than being placed in special education classrooms or schools. According to advocates the benefits of full inclusion are increased expectations by teachers, behavioral modeling of normally developing peers, more learning, and greater selfesteem. Although the notion of full inclusion has appeal, especially for parents concerned about their children's rights, there is very little empirical evidence for this approach, especially as it relates to children with autism. This manuscript addresses the literature on full inclusion and its applicability for students with autism. Although the goals and values underlying full inclusion are laudable, neither the research literature nor thoughtful analysis of the nature of autism supports elimination of smaller, highly structured learning environments for some students with autism.
This information was present throughout the Mackay Inclusion review process. In one session I attempted, along with ASNB Education Rep Dawn Bowie, to speak specifically about autism issues and the need for an evidence based approach by which autistic students are educated in a location, whether it be in the mainstream classroom or elsewhere, according to the realities of their individual conditions. My comments were met dismissively by a New Maryland school official who asserted that we were not there to talk about autism. They were also met with angry opposition by New Brunswick Human Rights Commission Chair Gordon Porter who was present and who told me and Mrs. Bowie that "you people should be thankful for what you have ". Mr. Porter then proceeded to talk about how bad it was in the Special Education system in New Brunswick many years ago and how the inclusion model was a very substantial improvement.
Given Mr. Porter's prominent role in putting the inclusion model in place in New Brunswick, and given his strong personal views, it is not surprising that the Human Rights Commission which he chairs has issued Guidelines which create a presumption in favor of classroom inclusion for all students. It is also not surprising in that the New Brunswick Association for Community Living was tasked by the Department of Education with holding professional development days for New Brunswick teachers to explain the recommendations of the MacKay Inclusion Review. The NBACL is a fierce advocate for the total inclusion model. The NBACL has paid staff who persistently lobby for the full inclusion model. An example are the awards they hand out to teachers in New Brunswick who best demonstrate inclusion practices in New Brunswick schools. The NBACL, in hosting the inclusion professional development days for teachers asked Gordon Porter to be the keynote speaker at the event. A request by ASNB to speak at the event, to speak with the teachers about autism, and the need for an evidence based approach, was rejected by the NBACL.
Mr. Porter and NBACL are both strongly committed to the full inclusion model and that commitment to a philosophy of classroom inclusion for all is reflected in the norm espoused by the new Human Rights Commission guidelines. The promotion of that norm by the Human Rights Commission will put even more pressure on teachers and school officials to put all students in the classroom. The promotion of that norm is contrary to the evidence based approach promised for autistic persons in the IDC Report and it is contrary to the duty to accommodate the individual differences of students with disabilities, particularly some students with profound autism disorder.
It was precisely that failure to accommodate individuals with disabilities that led Yude Henteleff QC to describe the full inclusion model as discriminatory in a paper he presented to the Canadian Assocation for Community Living in 2004. Mr. Henteleff has represented individuals with a variety of different disabilities including autism, deaf and hard of hearing,
aspergers, Tourette's syndrome, attention deficit hyperactivity disorders, developmental
disability, physical disability and the learning disabled. He has been the legal counsel for the Association of Parents of Children with Autism in Manitoba and has been associated with the Learning Disabilities Association of Canada. In The Fully Inclusive Classroom Is Only One Of The Right Ways To Meet The Best Interests Of The Special Needs Child Mr. Henteleff argued that the full inclusion approach is in itself discriminatory by failing to accommodate individual disability based differences. At page 2 he states:
It should be abundantly clear, having in mind the foregoing statistics, that for children
who suffer from emotional, mental, behavioural, cognitive, sensory, physical, expressive
language, visual and auditory difficulties (and often a combination of some of the foregoing), it is simply not possible to meet their diverse needs in one environment. One shoe simply cannot fit all.
Indeed, total inclusion is a discriminatory concept because it limits the environmental
choices, which groups of children and youth with differing difficulties have the right to make in their best interests.
I am completely dedicated to the public school system. I believe it is an integral part of
whom and what we are as Canadians living in a democratic society. That means a place where all children are welcomed - regardless of their gender, sexual orientation, ethnicity, colour, religion, physical or mental condition. In other words, the public school system is a place where the social contract guaranteed by the Charter and Human Rights Codes is fulfilled. That social contract is that every individual is entitled to equality and to be free from discrimination.
However, schools being a welcoming place regardless of gender, ethnicity, colour,
religion, physical or mental condition, namely inclusivity, is far different from what is described as "full inclusion" in the general classroom. Full inclusion falls far short of guaranteeing equality.
Mr. Porter, the Commission, and the NBACL which all advocate for full inclusion will argue that establishing a norm does not mean that all children must be kept in the classroom at all times and that their disabilities are accommodated. Their argument fails to take into account the pressure this will put on parents and educators to place children in the classroom first and to ask questions later, contrary to an evidence based approach and contrary to an accommodation of the child's real needs. Some parents, will not have a professional background to rely upon when dealing with the education system. Many are talked down to by educators. When told that the classroom is the right option for their child they not be inclined, or able, to challenge that position. With the Human Rights Commission creating a presumptive norm in favor of the classroom inclusion option there will be no realistic choice for the parents to consider in deciding how, and where, their child, severely autistic or otherwise should be educated.
The full inclusion model limits choice as Mr. Henteleff points out. The persistent efforts by the NBACL and its inclusion lobbyists to promote the full inclusion model has in practice limited choice for some parents and their autistic children who might be better served in a quieter environment outside the mainstream classroom. Mr. Porter, who has been a significant part of that push for full inclusion, and who is now the Chair of the New Brunswick Human Rights Commission, has presided over Commission guidelines which will reinforce the presumption of full classroom inclusion - to the detriment of some autistic children.
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