Shocking WebMD Medscape Autism Article

WebMD Medscape has published a shocking autism article in which it .... acknowledges the existence of large numbers of persons with Autistic Disorder and .... Intellectual Disability.  The article even dares to refer to Intellectual Disability under its name in the DSM-IV ... Mental Retardation.  Apparently the Medscape article authors do not appreciate the decades of committed research aimed at helping persons with MR that have resulted in profound medical advances like ... renaming Mental Retardation as Intellectual Disability  (DSM5).  

Dr. Laurent Mottron, and his mentor Michelle Dawson, for whom autism is a strength,  Estee Klar for whom autism is a joy, Ari Ne'eman, and the members of his  ASAN (Autism Self Advocacy Network) corporate board of directors,  for whom autism is a culture, even those who acknowledge the existence of persons with autism AND intellectual disability but KWibble over the numbers, would probably be shocked to read  Medscape's blunt references to autism and mental retardation/intellectual disability:

"Autism         Updated May 4 2012

Autism is a condition that manifests in early childhood and is characterized by qualitative abnormalities in social interactions, markedly aberrant communication skills, and restricted repetitive and stereotyped behaviors.

Most individuals with autism also manifest mental retardation, typically moderate mental retardation with intelligence quotients (IQs) of approximately 35-50. Although children with autism are often difficult to evaluate with intelligence tests, three fourths of autistic children function in the mentally retarded range.

Generally, the lower the IQ, the greater the likelihood of autism. However, the low functioning level hinders assessment for key characteristics of autism in individuals with profound mental retardation and IQs below approximately 20. A small portion of those with autism never develop spoken language. Thus, diagnostic instruments for autism may give spurious results in children with profound mental retardation.

This article addresses autism in individuals with mental retardation. For information concerning individuals with autism spectrum disorders and related conditions without mental retardation, please see Asperger Syndrome and Pervasive Developmental Disorder."

As the above quote clarifies the Medscape article is referring to Autistic Disorder when it refers to autism and makes clear the real divide on the autism spectrum of disorders: those with an autism disorder with intellectual disability and those with an autism disorder without intellectual disability.  

The article continues to shock with its honest discussion of other autism realities including the fact that many persons with autism disorders also suffer from seizures or that pharmaceutical therapies are ineffective in treating core deficits of autism.  

For this father of a son severely impacted by Autistic Disorder deficits and Intellectual Disability it is a refreshing change to read an article that speaks honestly about the nature of autism disorders and which acknowledges the realities of persons with autistic disorder and intellectual disabilities.  The DSM5 Autism Do-Over Committee, and various Neurodiversity ideologues, should follow the Medscape lead by providing "better information, better health".

DSM5's Most Fundamental Flaw? Combining The Autism Disorders Into One Disorder

Autism Advocate Ari Ne'eman Speaking At the National Press Club

My  son's severe Autistic Disorder is not the same 

autism disorder as Mr. Ne'eman's.

The DSM5  autism do-over, the New Autism Spectrum Disorder, will come into effect in 2013.  There is a further opportunity to offer public comment about the radical changes being forced upon the public but the DSM5 committees who have shaped the New ASD in the image of their own research biases have shown no inclination to acknowledge the merits of any of the many criticisms of their handiwork. It does not matter whether the criticism comes from expert professionals involved with shaping previous editions of the DSM (Fancis, Volkmar)  or a stumbling, ignorant, hysterical father (moi) of a severely autistic son who has lived first hand, 24/7 for 16 years,  with the realities of severe autism and who objects to the targeting of the intellectually disabled for exclusion from the New ASD. No matter the source the  DSM5 team has not flinched and has not deviated from their own research biased views of autism.  (The DSM5 team swears that the New ASD reflects solid autism research. DSM5 autism team member Catherine Lord though  has acknowledged that autism research tends to excluded those with intellectually disability  while also confessing that the real aim of the New ASD is to exclude those same intellectually disabled from autism diagnoses.) The biggest flaw is not the possible exclusion of some at the highest functioning end of the spectrum or the likely exclusion of many with intellectual disabilities.  It is the combining of disparate disorders into one.

The biggest flaw of the new DSM5 is the combining of the many autism disorders into one disorder when even the most ignorant, ill informed and irrational of persons dealing with autism ... parents ... can see that there are huge differences between those who  have fashioned careers as public spokespersons for all persons with autism and those who can not function in daily life.  

Ari Ne'eman is an intelligent, eloquent university graduate comfortable in discussing his vast knowledge of autism before assembled groups from the US to the UK.  This young man can hobnob with the intellectuals at the IACC, state and federal politicians in New Jersey and Washington and mainstream media representatives at the US National Press Club in Washington.  He appears to be very comfortable in front of media cameras. My son at 16 has accomplished much in terms of where he started but he is still working at a Dr. Seuss reading level, working with great effort to make a full sentence, lacks understanding of the world, engages in repetitive behavior that can end with self injurious behavior.

As a father of a low functioning autistic son I can not see the deficits that  resulted in an autism disorder for Mr. Ne'eman.  As an autism advocate who has worked with and met some higher functioning kids with Aspergers whose limitations are still noticeable I can not see those same limitations in Mr. Ne'eman. I do not believe that Mr. Ne'eman's professionally diagnosed autism disorder, or the autism disorders of the members of the corporate board oranized by the very high functioning Mr. Ne'eman have any similarity to my son's diagnosed Autistic Disorder or to those with Asperger's that I have met. Still Mr N. , like his ASAN board members presumably have diagnosed autism disorders. 

What is clear though is that Mr. Ne'eman's disorder is not the same autism disorder that I have seen in my real life, daily,  experiences as a father or as an autism advocate.  In the latter capacity I have met a number of persons with Aspergers whose diagnoses are clear to anyone who speaks with them but they are still different from my sons. They are also different from the severely autistic persons I have met on visits to psychiatric hospital facilities where they reside here in New Brunswick.

I am not suggesting that Ari Ne'eman does not have an "autism' disorder.  I am not qualified to say that and I recognize that and respect his professional diagnosis.  I am qualified, as an observant human being, to say that Mr. Ne'eman's challenges are not the same as my son or many others with Autism and Asperger's that I have met.  To me I see no signs whatsoever of a disorder of any kind in Mr. Ne'eman but again I realize I am not a qualified professional  and I assume that those who provided his diagnosis were capable professionals.  Mr Ne'eman's autism disorder though does not remotely resemble my son's or other persons I have met with autism and Asperger's disorders.

In the opinion of this humble dad the combining of the various autism disorders into one disorder is a fundamental flaw in the New Autism Spectrum Disorder. 

Strategic Research of Environmental Causes of Autism and Neurodevelopmental Disabilities

In A Research Strategy to Discover the Environmental Causes of Autism and Neurodevelopmental Disabilities, an editorial in the current issue of Environmental Health Perspectives, authors Philip J. Landrigan, Luca Lambertini and Linda S. Birnbaum make a  compelling argument for strategically researching environmental causes of autism and neurodevelopmental disabilities. In the process they provide an understanding of autism as a family of disorders.   The authors point out that, despite the attention paid to genetic causes of autism disorders,  a large number of genes have been identified as candidates in causing autism disorders with no single dominant genetic anomaly and with no disorders attributable to 60-70% of autism disorders: 

The candidate genes most strongly implicated in NDD causation encode for proteins involved in synaptic architecture, neurotransmitter synthesis (e.g., γ-aminobutyric acid serotonin), oxytocin receptors, and cation trafficking (Sakurai et al. 2011). No single anomaly predominates. Instead, autism appears to be a family of diseases with common phenotypes linked to a series of genetic anomalies, each of which is responsible for no more than 2–3% of cases. The total fraction of ASD attributable to genetic inheritance may be about 30–40%.

Landrigan, Labertini and Birnbaum summarize the evidence for the "proof of principle" that early exposures during “windows of vulnerability” that open only in embryonic and fetal life and have no later counterpart can cause autism.  They review the large numbers of synthetic chemicals, many of them untested, some of which are known to have toxic properties. The authors propose a strategic approach to researching possible environmental causes of autism by focusing:

"research in environmental causation of NDDs on a short list of chemicals where concentrated study has high potential to generate actionable findings in the near future. Its ultimate purpose is to catalyze new evidence-based programs for prevention of disease in America’s children."

The authors recognize that the list of 10 possible environmental causes deserving of focused research at this time would expand with time and scientific developments.  As a start though they propose based on the studies referenced following the substance: Lead (Jusko et al. 2008) Methylmercury (Oken et al. 2008) Polychlorinated biphenyls (Winneke 2011) Organophosphate pesticides (Eskenazi et al. 2007; London et al. 2012) Organochlorine pesticides (Eskenazi et al. 2008) Endocrine disruptors (Braun et al. 2011; Miodovnik et al. 2011) Automotive exhaust (Volk et al. 2011) Polycyclic aromatic hydrocarbons (Perera et al. 2009) Brominated flame retardants (Herbstman et al. 2010) Perfluorinated compounds (Stein and Savitz 2011).

The strategic approach to environmental autism research is an idea who time has come.  In fact it is long overdue. The respected authors of the EHP editorial will undoubtedly be vilified by the usual suspects, Neurodiversity ideologues and industrial and pharmaceutical spin doctors employed to cast doubt on the need for any environmentally focused autism research.  However, given the support of the NIEHS and Autism Speaks, there is substantial reason to hope that the strategic focused study of environmental causes of autism and other neurodevelopmental disorders is underway.

It's about time. 

Adults with Severe Autism Disorders: Do Canadians Give a Damn?

Taylor McNee, photo from CTV

In Ontario the family of 18 year old Taylor McNee is fighting for a place for him to live.  The CTV,  to its credit, is covering this story in detail. It isn't the feel good, kumbaya, autism is beautiful fluff that too often passes for autism awareness and disabilities policy. It is the story of a son who is a joy to his family but is also prone to rages resulting from his autism disorder (Fragile X syndrome) and developmental delays.  Hospitalized for several months after one such episode he now must either return home where he is a risk to his younger brother or have nowhere to live.  It is a story familiar to parents of severely autistic adults including here in New Brunswick.  The Taylor McNee story as reported on CTV:

"Taylor McNee is an 18-year-old with autism who been living in a hospital room for five months because there is nowhere else for him to go. And his case is once again highlighting a growing problem: who will take care of autistic children once they become adults? Taylor has a genetic condition called Fragile X syndrome, which has led to both autism and developmental delays. His family says he is a sweet, loving boy who is usually very easygoing. But Taylor is prone to rages and can suddenly lose control.

Five months ago, one of the rage incidents led to injuries that required him to be taken to Toronto Western Hospital. He's long since recovered but has been there ever since. The hospital says Taylor needs to leave, since he no longer needs medical care. But his mother says it's not safe for him to come home and that he risks injuring his younger brother, Ethan, who also has a genetic developmental disorder."

The Taylor McNee story is common elsewhere in Canada including here in New Brunswick where severely autistic adults live in inadequate group homes lacking the professional expertise and adequately trained staff, life in a psychiatric hospital and a variety of ad hoc arrangements.  Efforts to establish an intermediate level facility close to autism expertise in Fredericton have been spurned both by government and by the New Brunswick Association for Community Living which dominates all decision making involving persons with disabilities in New Brunswick.  

As in education so too in adult autism residential care.  The NBACL offers feel good cliches about community and inclusion but resists efforts to establish an intermediate level of care with the expertise and accommodation of the challenges of the severely autistic developmentally delayed population.  The NBACL officials, Order of Canada and Order of New Brunswick ribbon collectors and political friends feel good. The severely challenged autistic population and their families are left to fact the reality of live in hospitals ... if they are lucky.

Here in New Brunswick, and elsewhere in Canada, we must abandon reliance on feel good cliches and fluffy philosophies and start focusing on the realities of life for severely autistic developmentally delayed adults with the aim of providing them with appropriate facilities in which to live out their lives in decent conditions. 

Simple Solutions Will Not Help New Brunswick Students with Autistic Disorder and Other Complex Challenges

New Brunswick's Gordon Porter and his associates with the NB Association for Community Living are now in charge of New Brunswick's inclusive education system.  The Gordon Porter Inclusive Education Review taking place in New Brunswick will impose their beliefs on NB students with disabilities including those with severe, complex disorders like my younger son who has severe autistic disorder with profound developmental delays.  The review itself  is unlikely to do anything except reiterate the Porter/NBACL inclusion beliefs which have not changed in 30 years.  Although present for one of the Porter/NBACL review sessions in Fredericton it was made clear that the review did not want to hear from me; a known critic of those beliefs.  

Any doubts about what Mr Porter means by inclusion are put to rest by his own admission, in a recent presentation in Newfoundland,  that inclusion in Porter World is simple, very simple .... everybody, regardless of the complexity or severity of their condition,  regardless of their level of understanding or learning ability, regardless of their behavioral or sensory challenges belongs  in the regular classroom.  For Gordon Porter, in his own words, inclusion is that simple.   As the father of a severely autistic, profoundly developmentally challenged son I wish my son's realities were as simple as Gordon Porter's beliefs. But they aren't.  What follows is  Gordon Porter/NBACL inclusion in Mr Porter's own words:

CORNER BROOK — Gordon Porter believes inclusion is the most natural thing in the world. The educator and director of Inclusive Education Initiatives presented a session on inclusive education at the Greenwood Inn and Suites on Thursday. Porter, who is also the editor of the Inclusive Education Canada website inclusiveeducation.ca, spoke to parents, educators and agency professionals who deal with children with special needs at the pre-conference for the Newfoundland and Labrador Association for Community Living Conference taking place in the city today and Saturday. The session was sponsored by the Community Inclusion Initiative. 

 Porter’s session revolved around the theme of parents and teachers working together to make inclusion work.“It means kids go to their neighbourhood schools with kids their own age in regular classes,” said Porter.“If you’re seven years, old you go to the school just down the street. You go in a class with other seven-year-olds, and you’re supported if you have extra needs. “It’s so simple, it’s that simple,” said Porter."

My son's autistic disorder challenges are not simple.  The extreme, everybody in the regular classroom inclusion model, is simple because evidence to the contrary is ignored by those who have pushed it.  That is a simple fact. 

Learning Disabilities Associations (Canada, Ontario) Do Not Support the Porter/NBACL Full Inclusion Model

During the MacKay Inclusion Review the Autism Society of New Brunswick opposed the full or extreme inclusion model which Gordon Porter and the NBACL is now in the process of again imposing on New Brunswick students.  I have commented many times expressing my personal opposition to the inflexible full inclusion beliefs which have caused harm to my severely autistic son and others for whom the mainstream classroom is not an appropriate educational environment.  This is not just an issue though between some parents of autistic children and the NBACL/Porter Full Inclusion true believers. The Learning Disabilities Associations of Canada and Ontario have also opposed the full inclusion model which limits placement options, causes physical harm to some, and deprives some of a real education: 

LEARNING DISABILITIES ASSOCIATION OF ONTARIO 

POLICY STATEMENT ON EDUCATIONAL INCLUSION FOR

STUDENTS WITH LEARNING DISABILITIES 

The following policy statement of the Learning Disabilities Association of Canada (LDAC) was adopted by the Board of Directors of the Learning Disabilities Association of Ontario (LDAO), as recommended by the LDAO Legislation and Policy Committee, on November 17, 2008. 

Learning Disabilities Association of Canada (LDAC) Policy Statement on 

Educational Inclusion for Students with Learning Disabilities (presented to the 

LDAC Executive Committee in February 2005, the LDAC Board of Directors in June 2005 and ratified on November 26, 2005). 

STATEMENT

The Learning Disabilities Association of Canada (LDAC) does not support full 

educational inclusion or any policies that mandate the same placement, instruction, or treatment of all students with learning disabilities or the idea that all students with learning disabilities must be served only in regular education classrooms at the exclusion of all other special education placement options. 

LDAC believes that full inclusion, when defined this way, violates the rights of parents and students with disabilities guaranteed by the Charter of Rights and Freedom and Human Rights Codes which guarantee education equality and freedom from discrimination and rejects the arbitrary placement of all students in any one setting.  

LDAC supports the availability of a continuum of education services as prescribed in an individual educational plan for each student with learning disabilities to ensure success and must be flexible enough to meet the changing needs of students with learning disabilities by:  

1) Providing a range of options and services and diverse learning environments 

(placements) to meet the specific needs of each student;  

2) Providing the most enabling environment for that student that will effectively meet the student’s best interests socially, emotionally, behaviourally, physically and educationally; and, 

3) Focus on what is in the best interest of the student and, in that context, consider all the needs of the student as expressed by the student and his/her parents and that of their consulting professionals.  

RATIONALE 

Because each student with learning disabilities has unique needs, an individualized education plan and placement must be tailored on individual strengths and needs. For one student, the plan may be provided in the regular classroom yet for another student, the regular classroom may be an inappropriate placement and may need alternative instructional environments, teaching strategies, and/or materials that cannot or will not be provided within the context of the regular classroom environment. The severity and nature of the individual needs should determine the alternative teaching strategies, accommodations, resources, supports and placement required.

The LDAO repeated their opposition to a mainstream classroom inclusion only policy in a February 10, 2009 letter to Ontario Education Minister Kathleen Wynne.  The letter stressed the need for a range of placement options based on the needs of the individual student:

Inclusion is good when it means something more than placement in a common mainstream classroom. Inclusion is good when it does not deprive individual students with a range of education placement options that suitable for their needs.  Inclusion is good when it is evidence based on the best interests of the individual student.  Flexible inclusion is good.  

Inflexible, dogmatic, everyone in the classroom philosophy is not good.  It harms some students and deprives them of a meaningful, happy education experience.   Autism advocates in New Brunswick fought the extreme everyone in the mainstream classroom model during the MacKay and Ministerial Committee inclusion reviews.   We were successful in ensuring the enactment of an inclusive education definition by our Department of Education which recognizes that real inclusion means an approach which assesses the individual needs, abilities and challenges of individual students on an evidence basis.  

Now Gordon Porter and the NBACL, both of which oppose the evidence based approach,  are now in charge. They are effectively writing and enforcing their extreme mainstream classroom inclusive education for all policy for the Alward government.  Autism parents must be vigilant in resisting their back to the future philosophy and insist on an evidence based approach guided by our children's best interest; as radical as those concepts may seem to Mr Porter and company.  

It is not clear where the Learning Disabilities Association of New Brunswick stands on these issues but their counterparts in the LDA of Canada and Ontario have spoken clearly and their positions are consistent with an evidence based student centered approach.  Their clear, strong positions will be of great help in our efforts. 

Autism Education in the Era of the NBACL Inclusion Government

Premier Alward of New Brunswick acknowledges IRIS’ ‘Policy 

Making  for Inclusion – Leadership Development Program’

The New Brunswick Association of Community Living now determines inclusion and disabilities policies in the New Brunswick government with immediate repercussions in the  Department of Education and Early Childhood Development ... to the detriment of many children with autism disorders.  While always very influential in NB government education decisions the NBACL is now effectively in charge of disability and inclusion policies in New Brunswick schools. The ramifications for children and students severely affected by autism disorders and intellectual disabilities are very serious.  Independent, quality, autism specific training has been abandoned in favor of in house training and more and more pressure will be brought to bear on district and school officials to require all children receive instruction in a mainstream classroom even those for whom the mainstream classroom causes physical harm and disrupts their learning and development.

In the decade preceding the election of the Alward government New Brunswick made many gains in providing providing evidence based autism interventions to New Brunswick preschoolers and students over the decade preceding the Alward government election.  Those gains were provided via UNB-CEL Autism Intervention Training, a program recognized by US autism experts David Celiberti and Eric Larsson as a model for other Canadian and some US jurisdictions.  Those of us who advocated for these autism specific services were opposed strenuously by the very well connected and influential New Brunswick Association for Community Living.  Now, under the Alward government the NBACL is even more influential. NBACL actually sets Alward government disability policy and ensures compliance by Education officials from the Deputy Minister level down to the teachers and aides that deliver the programs.  Along the way the UNB-CEL Autism training has been dropped in favor of in house "training" and a renewed push for dumping all children in the mainstream classroom without regard for whether the classroom is the appropriate learning environment for them.  There is no room for flexibility or accommodation of children and students with severe autism disorders with intellectual disabilities in the NBACL Department of Education and Early Childhood Development. 

New Brunswick Premier David Alward has publicly acknowledged the role of the New Brunswick Association of Community Living related organizations in setting inclusion and disability policy in New Brunswick as was made clear on the community living organizations' IRIS site. IRIS is the Institute for Research and Development and Inclusion in Society. It purports to be the "research" branch of Community Living Assocations across Canada. The IRIS board of directors consists of present and former Community Living Association officials from accross Canada including former NBACL official Lorraine Silliphant.  In February 2012 IRIS spent a week indoctrinating high ranking New Brunswick education officials including Deputy Ministers and Assistant Deputy Ministers in the Community Living Association philosophy based policies of full mainstream classroom inclusion as was bragged about on the IRIS web site:

"New Brunswick Premier David Alward issued a letter Friday February 4th to all participants in the ‘Policy Making for Inclusion – Leadership Development Program’ that will be delivered in Fredericton by IRIS February 6-10 to senior officials with the Government of New Brunswick. The program is designed to assist policy makers achieve the government’s platform commitment to “enable New Brunswickers with disabilities to actively participate in all aspects of society and take their rightful place as full citizens.” With Deputy Ministers, Assistant Deputy Ministers, Human Resources Directors and Policy/Program Directors from across government participating in the week-long series of leadership development workshops, major strides will be taken towards creating a public service in New Brunswick ready and able to deliver on the government commitment to people with disabilities. In his letter, Premier Alward thanked The Institute “for developing this program to inform our public servants on the latest research on disability and inclusion…” A core resource for the program is the guide to Disability and Inclusion Based Policy Analysis just published by The Institute."

Even without the indoctrination of high ranking government officials in a week long session of Community Living policies the NBACL exercised a dominant role in the NB government.  NBACL official Krista Carr is the wife of Early Education and Childhood Development Minister Jody Carr.  Minister Carr's brother Jack Carr, also a member of the governing Alward Conservatives, is a former NBACL employee. Gordon Porter, an icon of the NBACL and CACL organizations, was a member of the Alward transition team and is now conducting yet another inclusion review with the aid of NBACL friendly team members.  Only views consistent with the NBACL total inclusion beliefs are tolerated.  In the past high school principals have been trained by NBACL officials who handed out awards annually to teachers who exemplify best (as in NBACL compliant) inclusion policies.

Admittedly the cliches and buzz words sound good. Community Living Association spokespersons never tire of telling us how awful things were in the bad old days before they changed everything for the better.  The NBACL, the CACL, IRIS and other CLA groups never, ever, acknowledge the evidence of the harm they have caused to some people by their fanatical obsessions like total classroom inclusion for all.   My son with severe autistic disorder and intellectual disability suffered in a mainstream classroom.  Conscientious educators locally, who actually work with and know my son have accommodated him with a flexible inclusion model, a model which is now at risk in the NBACL Department of Education and Early Childhood Education era.  The NBACL aristocracy that sets and enforces inclusion policy does not mention evidence like my son's case, that contradicts their everyone in the classroom philosophy.

So too the total inclusion extremists pay no attention to severely impaired adults who can not live in an ad hoc, loosely monitored group home system make no mention of the adults with autism disorders and intellectual disabilities living in psychiatric facilities in NB.  Instead they pretend all is swell, give each other awards, pat each other on the back incessantly and fight efforts to establish or even discuss an intermediate level of residential care with professionally trained assistants and higher levels of security for those who need such interventions.

There is no evidence to support the policies of the NBACL which now sets inclusion policies for New Brunswick government departments including Education and Early Childhood development. The evidence based consideration of the  best interests of individual students is in serious, serious threat of extinction in the NBACL dominated Alward government era. Specialized training such as that provided by the UNB-CEL Autism training program is now gone.  Flexible inclusion policies such as that which have accommodated my son with autism specific instruction will be targeted.

The NBACL is in charge.

CBC: Autism advocate questions 'extreme' inclusion model

The caption below the picture of me and Conor is from the CBC web site article Autism advocate questions 'extreme' inclusion model.

"A high-profile autism advocate in New Brunswick is questioning the merits of what he calls the Department of Education's extreme inclusion model. “I believe that the kind of evidence-based intervention that we need for our children, in some cases children with autism, is absolutely necessary and to deny it is a denial of the human rights, basically, of children like my son,” he said. Doherty was responding to a recent statement written by Gordon Porter, the former head of the New Brunswick Human Rights Commission.

Harold Doherty, who has an autistic son and runs a blog dedicated to autism issues, contends the classroom isn't the right setting for every child. Porter, who has played a key role in the province's approach to inclusive education, wrote on a Canadian education website that some interventions in the school system result in segregation and pose a challenge to inclusive education. Doherty, however, argues that’s based on philosophy, not evidence.

He is challenging Porter to a public debate on the issue."

Following is the CBC audio clip of my interview by CBC's Terry Seguin.

Autism and Extreme Inclusion: I Challenge You Gordon Porter To A Public Debate Of Your Extreme Inclusion Beliefs

Evidence Extreme Inclusion Advocates Ignore

Dr. Gordon Porter was one of the members of NB Premier David Alward's post election transition team of special advisers.  Unfortunately for many NB students with severe autism deficits he has continued to act as a special adviser to both Premier Alward and Education and Early Childhood Development Minister Jody Carr.  Gordon Porter's past record consists of promoting his own extreme inclusion agenda which dictates that all children with special needs, including children severely affected by autism disorders and developmental delays, must be educated in the mainstream classroom.  A recent comment by professor and education consultant Dr. Paul W. Bennett questions Dr. Porter's "full" inclusion philosophy and highlights a recent public statement by Dr. Porter that does not bode well for some special needs children in NB schools, including those, like my son, who are severely affected by autism and developmental delays.

Since the last provincial election Dr. Porter has been conducting yet another review, the third such review in the past 10 years,  of inclusion policies in New Brunswick schools.  The first was conducted by Wayne MacKay. During that process I attended as an autism representative with fellow autism parent Dawn Bowie, a registered nurse.  Dr. Porter who participated in a discussion group with  Dawn and me was visibly unhappy with our attempts to speak specifically about the needs of autistic children,  the needs of some autistic students for evidence based learning methods and quieter learning environments outside the mainstream classroom.  He admonished us for our comments declaring that "you people" should be thankful for what you have.

The second inclusion review was a high profile Ministerial Review led by the Ministers of Education, Health and Social Development. It included broad consultation of community groups, unions and government officials and resulted in a new definition of inclusive education  for New Brunswick schools that recognizes the best interests of the student and evidence based practices as guiding principles in New Brunswick schools:

"Inclusive Education

I. Vision 

An evolving and systemic model of inclusive education where all children reach their full learning potential and decisions are based on the individual needs of the student and founded on evidence.

...

III. Overarching Principles

The provision of inclusive public education is based on three complementary principles:  

(1) public education is universal - the provincial curriculum is provided equitably to all students and 

this is done in an inclusive, common learning environment  shared among age-appropriate, 

neighbourhood peers; 

(2) public education is individualized - the success of each student depends on the degree to 

which education is based on the student’s best interests and responds to his or her strengths 

and needs; and 

(3) public education is flexible and responsive to change. 

Recognizing that every student can learn, the personnel of the New Brunswick public education 

system will provide a quality inclusive education to each student ensuring that: 

Student-centered 

1. all actions pertaining to a student are guided by the best interest of the 

student as determined through competent examination of the available 

evidence;

2. all students are respected as individuals.  Their strengths, abilities and 

diverse learning needs are recognized as their foundation for learning and 

their learning challenges are identified, understood and accommodated;  

3. all students have the right to learn in a positive learning environment;"

The evidence based practices principles established in the 2009 inclusive education policy was opposed strenuously, during the second inclusion review, by the representative of the New Brunswick Association for Community Living, a group tied very closely to Dr. Porter.  

The third inclusion review led by Dr. Porter is likely to see an unraveling of the principles of evidence based accommodation of individual student needs. I attended, after requesting the opportunity to do so, a discussion group held at the education building on King Street in Fredericton, during the third review directed by  a retired education official with close ties to the NBACL.  I arrived before other participants and had a pleasant chat with the director.  Once the discussion started though the director did not want to let me contribute to the round table discussion.  She stated twice, in denying me the opportunity to speak, that we would like to give others the opportunity to  speak. I was puzzled because I had not addressed the discussion at all when she began muzzling me. Finally I asked her if she would prefer that I leave the discussion since she apparently did not want to hear what I had to say.  She did then allow me to speak but it was clear to me that my input was not welcome.

In his comment “Full Inclusion” in Public Schools: Is It Best for all Special Needs Kids?  Dr. Paul W. Bennett reviews Dr. Porter's "full" inclusion model, some of the history of the perpetual campaign by Dr. Porter and Professor Wayne MacKay to impose their extreme version of inclusion on New Brunswick schools and their close connections to the current New Brunswick government.  He summarizes a recent commentary by Dr. Porter on the subject of inclusion in our schools,  and asks serious questions about Porter's apparent bias as the co-director of the current New Brunswick inclusion review.

In the commentary Are We Star Gazing? Can Canadian Schools Really be Equitable and Inclusive?  Dr. Porter displays no knowledge or understanding whatsoever of the needs of  autistic children in the school system.  The ego that landed 30 years ago and imposed extreme inclusion on all NB students including those, like my son, with severe autistic and developmental challenges, goes into a full scale attack against the provision of expert, evidence based approaches to the education of children with severe challenges: "we need to repudiate the notion that “special” or “expert” is better when the result is a program that is “segregation” and “exclusion”"

Gordon Porter provides no references to studies or evidence of any kind to back up the opinions he expresses in his commentary.  My son was removed from one of Dr. Porter's "inclusive" classrooms here in New Brunswick at our request because he was biting his hands every day in the classroom where he was overwhelmed by the sensory challenges and by the fact that he was not functioning on the same level of intellect and understanding as his chronological peers. He was removed with the  cooperation and concern of the local educators who could actually see what Gordon Porter's inclusion, what his egotistical insistence that all children prosper in the mainstream classroom was doing to my son. Gordon Porter's inclusion was hurting my son. Once removed from the classroom to a quieter area the biting ceased.

Now in high school Conor starts his days with other challenged children in a resource center, he goes to public areas of the school and to the swimming pool at  the local middle school he once attended.  He also recently attended, with other challenged students from the school's resource center, a play put on at the Playhouse by a group of Leo Hayes High School students.  My son has been accommodated under a flexible model of inclusion which sees him visit common areas and socialize within his abilities while receiving the evidence based instruction he needs in quieter areas of the school.  With flexible inclusion and the evidence based instruction Gordon Porter opposes my son absolutely loves school. It is Gordon Porter's extreme inclusion model that has in the past, and once again, poses a serious threat to his real inclusion in a positive educational experience.

You may or may not be a star gazer Gordon Porter but you are fundamentally ignorant about what my son, and many others with similar challenges, need in order to prosper and enjoy their education experience.

Dr. Porter, if you, or any of your friends in the NBACL or in the Alward government,  are reading this blog I challenge you to debate me openly and publicly on the merits of the extreme inclusion model that caused harm to my son and which you are now in the process of imposing once again on him and children with similar challenges.

I won't hold my breath waiting for you to accept my challenge.

Harold Doherty
Conor's Dad

We Are Fine Enough: A Mother's Story of Her Son and His Severe Autism Realities

We Are Fine Enough, the video embedded below, is a moving and honest account of Charlie and his severe autism and cognitive impairment.  The story is told through the narrative of his mother Cynthia Bartlett, who lives with Charlie  here in New Brunswick, and photos taken over an extended period  by photographer and photojournalist  Marc Schlossman.   More details,  as posted on Vimeo, follow the video.  As anyone reading this site is aware, my son Conor also suffers from the realities of severe autism.  I was moved by Cynthia's honest, calm  portrayal of her son's challenges and the evidence it provides of the severe autism realities that do not usually show up in large mainstream media productions.  

We Are Fine Enough from Marc Schlossman on Vimeo.

'We Are Fine Enough' is an intimate, powerful and sensitive portrayal of the life of an autistic child and the ways in which he and his family cope with his disability. In 1994, Marc Schlossman began a photojournalism project documenting the life of Charlie, a five-year-old boy with severe autism and profound learning difficulties. He has continued documenting Charlie, now 20, and his family. Cynthia Bartlett, Charlie's mother, saw her one-year-old son develop the most severe level of autism within autistic spectrum disorder. Only now is Charlie starting to seek and enjoy social contact. Yet he remains self-injurious, he has no ability to speak and he is incontinent. He is dependent on his mother and those around him for his basic care.

'We Are Fine Enough' consists entirely of still photographs from Charlie's life with a narration by his mother. The film began as four 3-minute films commissioned by Channel 4 in the UK for their '3-Minute Wonders' slot and was broadcast in September 2005. Marc began the project to increase awareness of lives with autism and to build a greater understanding of autistic spectrum disorders. 'We Are Fine Enough' is the culmination in film of a long-term commitment to providing a unique view into lives with autism. 

OOLAID: Conor's Autism Challenges, Sense of Humor and Progress

I was doing some work at home the other day and was looking for a notebook to record some information.  I found the one pictured above with the word OOLAID in Conor's hand printed on the back cover. OOLAID is a sign of some of the challenges Conor faces by virtue of his severe Autistic Disorder and profound developmental delays.  At the same time it is a sign of his sense of humor and his progress.

OOLAID, as you might have guessed is short for Kool-Aid.  Conor loved Kool-Aid, both the flavors and the different colors.  At a certain point he was getting sick once a week almost on schedule every Friday.  I couldn't figure out what was bothering him until I realized how much Kool-Aid Conor was self imbibing.   Conor was drinking Kool-Aid obsessively.  I figured the volume of Kool-Aid he was drinking was probably making him sick.  Rather than try to finesse or manage his consumption of Kool-Aid I cut him off completely to see if his  excessive consumption of K-A was the problem.  The weekly vomiting sessions stopped immediately and have not recurred since.

I am not knocking Kool-Aid or any contents including dye for the colors. In Conor's case it was clearly his obsessive consumption of the different flavors and colors that was the issue.  His consumption was not what you would expect from anyone and had to be modified.  We opted for the complete cut off approach and substituted more juices and milk when ever he requested Kool-Aid which we kept out of the house.  When Conor asked for Kool-Aid his mom would ask him what does Daddy say to Kool-Aid and Conor would answer Nooooooooooo!

Both in an attempt to change Dad's mind, and in a demonstration of his sense of humor Conor will periodically ask for OOLAID instead of Kool-Aid.  He will often laugh while doing so.  What surprised me about the "OOLAID" on the back of the notebook is that he printed it, without any prompting, entirely on his own initiative and without any reinforcement for having written his letters.   

To many observers Conor's initiative in writing OOLAID may not seem like much but to this father of a severely autistic, intellectually disabled son .... it made my day to find this bit of Conor handiwork. It really made my day!

Autism Rates Reach New Epidemic Levels? Round Up the Usual Suspects!

"The usual suspects

The people habitually suspected or arrested in response to a crime. The phrase is usually used in regard to scapegoats rather than actual perpetrators of the crime in question.

This expression has a specific and unambiguous origin. It was spoken by Captain Louis Renault, the French prefect of police, played by Claude Rains in the 1942 U.S. film Casablanca. The context was a scene in which the Nazi, Major Strasser is shot by Humphrey Bogart's character, Rick Blaine. Renault was a witness to the shooting but saves Rick's life by telling the investigating police to "round up the usual suspects"."


-The Phrase Finder

CDC Director Dr. Thomas Frieden, playing the part of Captain Renault from the film classic Casablanca, rounds up the usual suspects as the CDC announces stunning new autism rates in the US of 1 in 88 children, 1 in 54 boys:

"DR. THOMAS FRIEDEN, director, Centers for Disease Control and Prevention: 

There are a few things that we know for certain and there are some things that we don't know. And we always want to be up front about what we do and don't know.

We know for certain that doctors are getting better at diagnosing autism. We also know for certain that communities are getting better providing services to children with autism and that at CDC we've gotten better at tracking all of the children in a community who may have been diagnosed or identified with autism.

So we know that some of the increase is certainly because we're detecting more cases of autism. Whether that's all of the increase or not, we simply don't know. But we do know that there are many children with autism and that many of them need services and that diagnosis is often too late.

So whether this is a real increase or not is really secondary to saying that this is a big problem, lots of people are out there who need services and would benefit from services."

There is no dispute that diagnostic change, increased awareness and better detection probably explain some of the repeated and astonishing increases in autism diagnoses.  There is, however, no definitive study, or group of studies, which assigns 100% responsibility for the pre-2012 increases entirely to these factors.  There is absolutely no credible basis for anyone to state that the recent increase from 1 in 110 to 1 in 88 over a period of a few years is entirely attributable to diagnostic and social factors.  

Autism research funding has historically been directed overwhelmingly towards genetic autism research.  Only in recent years has any significant support been provided for environmental causes or triggers of autism, causes and triggers which might, and probably are, involved in these stunning increases in the numbers of children diagnosed with autism.  

The safe route to take in the face of such astonishing numbers is to invest more monies in treatment, education and residential care of those affected by autism disorders and to invest substantially more research dollars in exploring the environmental causes of autism disorders.  We must search for all the possible suspects as we try to determine what is causing the epidemic of autism disorders that increasingly affect more and more of our children.  

Canada's Autism Epidemic? To Start With We Have to Use American Numbers 1in 88 Children, 1 in 54 Boys

Canada Flag Photo by Harold L Doherty

The CDC in the US has released new numbers on the autism epidemic in the US.  It now estimates that 1in 88 children (1 in 54 boys) have an autism disorder.  There are no known, reliable estimates available for Canada which has not updated its autism estimates in several years.  The Harper government has not taken Canada's national autism crisis seriously preferring to hide behind constitutional walls and leave the availability of treatment to an autistic child to depend on which province his/her parents live in.  

A National Autism Symposium was cancelled once the Harper government became aware that serous autism advocates were planning to participate.  The symposium was rescheduled and the resulting symposium was a sham. Speakers and so called  "community representatives" were chosen who would not take an aggressive advocacy position on any autism issues.  

The speakers list even included persistent anti-ABA activist Dr. Laurent Mottron who believes that the idea of curing autism is nonsense.  Mottron's mentor and fellow anti-ABA, anti-autism cure activist Michelle Dawson was also in attendance. Causes of autism stressed the genetic bases of autism with no attention to possible environmental causes or triggers.  The prevalance rate of 1 in 165 advanced by Dr. Eric Fombonne at that 2006 symposium is still the only figure recognized by the Harper government and by the Autism Society Canada. 

With the release of the United States CDC estimate of 1 in 88 Autism Speaks has called for a serious response to the autism epidemic:

Autism Speaks called for the development of a national autism action plan that should include, among other elements:

• Increased funding for basic science uncovering the genetic underpinnings of autism;
• Increased funding for environmental research detecting the causes of autism;
• Accelerated funding and development of effective medicines and treatments;
• Commitment to a strategy where all children with autism from every background are diagnosed no later than18 months of age;
• Commitment to a National Training Corps to recruit more therapists and service providers, as well as specially trained teachers and teacher assistants;
• A strategy to address the growing needs of adults with autism, specifically around continuing education, employment, housing/residential living and community integration.

The Autism Speaks recommendations are solid and, hopefully, will be adopted in the United States.  In Canada we can not realistically expect a serious response along those lines from our current Federal government.  That has been clearly demonstrated over the past several years of Harper Conservative rule.

In terms of the prevalence rate though it is absurd to rely  on the outdated figure of 1 in 165.   In the absence of any credible, current estimates from Canadian government institutions or from federal autism advocacy groups, the US figure of 1in 88 should be taken as the best available estimate of Canada's autism rates. 

We must also continue the push for national Medicare coverage of effective ABA autism treatment, for continued, real autism research of causes and cures, and for the beginnings of a plan for adult autism employment opportunities and adult residential care and treatment facilities.  

The US has stepped up to the plate, again, in offering meaningful, honest information about the autism epidemic.  Canada has long suffered from a lack of will that has allowed our autism epidemic to become a national autism crisis.   We must begin now working toward the day when a new national government is elected that will take our autism crisis seriously. 

In the meantime we should abandon the ridiculously outdated autism estimate of 1 in 165 and use the American estimates: 1 in 88 children, 1 in 54 boys. 

AUTISM SPEAKS Demands An Urgent, New Response To The Autism Epidemic As CDC Updates Prevalence Estimates

1 in 88 Children; 1 in 54 Boys

AUTISM SPEAKS DEMANDS AN URGENT, NEW RESPONSE TO THE AUTISM EPIDEMIC AS CDC UPDATES PREVALENCE ESTIMATES

Population of People with Autism and Cost to Society Continue to Skyrocket

A National Public Health Crisis Requires a National Strategy

NEW YORK, N.Y. (March 29, 2012) – Autism Speaks, the world’s leading autism science and advocacy organization, today called on the nation’s elected and appointed leaders to immediately develop a new, coordinated strategy to take on a national public health emergency – the autism epidemic – in the wake of a new report from the U.S. Centers for Disease Control (CDC) finding that autism is now diagnosed in a staggering 1 in every 88 American children.

Bob Wright, co-founder of Autism Speaks, said, “We have an epidemic on our hands.  The costs are staggering and will continue to rise as prevalence continues to increase. We know that early diagnosis and treatment are critical, so it is imperative that the U.S. government steps up its commitment to helping people living with autism today. There is a way to address this.  The investment we make now is essential to reducing the immediate and long-term costs of autism to families and society.”

Autism Speaks called for the development of a national autism action plan that should include, among other elements:

• Increased funding for basic science uncovering the genetic underpinnings of autism;
• Increased funding for environmental research detecting the causes of autism;
• Accelerated funding and development of effective medicines and treatments;
• Commitment to a strategy where all children with autism from every background are diagnosed no later than18 months of age;
• Commitment to a National Training Corps to recruit more therapists and service providers, as well as specially trained teachers and teacher assistants;
• A strategy to address the growing needs of adults with autism, specifically around continuing education, employment, housing/residential living and community integration.

"Our commitment must meet the challenge,” added Wright.  “We need the President, the public health agencies and representatives from both sides of the aisle to come together.  A national emergency needs a national strategy.  Anything less won't be enough." 

The CDC report, published in this week’s Morbidity and Mortality Weekly Report (MMWR), states that more than 1 percent, or 1 in every 88 children, is diagnosed with autism today, including 1 in 54 boys. This is a 78% percent increase in 6 years (2002-2008) and a 10-fold (1000%) increase in reported prevalence over the last 40 years. The report uses the same methodology that produced the CDC’s 2009 prevalence findings of 1 in 110 children with autism.

"We know early diagnosis matters, but early diagnosis without access to treatment means nothing,” said Geraldine Dawson, Ph.D., Autism Speaks chief science officer. “A majority of children don't get the treatment and services they need and deserve.  We have to address all of this as we move forward."

“The CDC numbers are alarming, yet they don’t begin to tell the story of the real families, real individuals struggling every day,” said Autism Speaks President Mark Roithmayr.  “From fighting to get a diagnosis and secure appropriate educational services and therapies, to trying to manage tremendous financial and emotional burdens or find a satisfying job opportunity, families are engaged in a daily battle against this disorder. We need to marshal the same resources and attention that the government has devoted to other diseases and disorders and finally make this a fair fight.”

The total 2011 National Institutes of Health budget was $30.5 billion. Of this, only $169 million – or 0.6% -- was directly focused on autism research.

Earlier this week, Autism Speaks announced preliminary results of new research that estimates autism costs society a staggering $126 billion per year (U.S.) – a number that has more than tripled since 2006. This cost increases to $137B with the new prevalence numbers. The cost of providing care for each person with autism affected by intellectual disability in the U.S. is $2.3 million through his or her lifespan. The lifetime cost of caring for individuals who are not impacted by intellectual disability is $1.4 million. The Autism Speaks-funded research was conducted by researchers Martin Knapp, Ph.D., of the London School of Economics and David Mandell, Sc.D. of the University of Pennsylvania.

About Autism

Autism is a general term used to describe a group of complex developmental brain disorders – autism spectrum disorders – caused by a combination of genes and environmental influences. These disorders are characterized, in varying degrees, by social and behavioral challenges, as well as repetitive behaviors. An estimated 1 in 88 children in the U.S. is on the autism spectrum – a 1000 percent increase in the past 40 years that is only partly explained by improved diagnosis.

About Autism Speaks

Autism Speaks is the world’s leading autism science and advocacy organization. It is dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. Autism Speaks was founded in February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Mr. Wright is the former vice chairman of General Electric and chief executive officer of NBC and NBC Universal. Since its inception, Autism Speaks has committed over $173 million to research and developing innovative resources for families. Each year Walk Now for Autism Speaks events are held in more than 95 cities across North America. To learn more about Autism Speaks, please visit www.autismspeaks.org.

Autism Speaks: Lifetime Care of Individuals with Autism Highest for Those with Intellectual Disability $2.3 Million U.S.

NOTE: The information in this Autism Speaks news release is based on the US estimate of 1 in 110 persons having an autism disorder.  New autism prevalence information released today by the CDC indicates that autism disorder diagnoses have increased by 78% to a current rate of 1 in 88 persons, 1 in 55 for males.   HLD. 

NEW RESEARCH FINDS ANNUAL COST OF AUTISM HAS MORE THAN TRIPLED TO $126 BILLION IN THE US AND REACHED £34 BILLION IN THE UK

Lifetime Care of Individuals with Autism Highest for Those with Intellectual Disability $2.3 Million U.S. and £1.5 Million U.K.  

New York, N.Y. (March 28, 2012) – Autism Speaks, the world’s leading autism science and advocacy organization, today announced preliminary results of new research that estimates autism costs society a staggering $126 billion per year (U.S.) – a number that has more than tripled since 2006, and annually in the U.K. has reached more than £34 billion (equivalent to $54 billion U.S.). The costs of providing care for each person with autism affected by intellectual disability through his or her lifespan are $2.3 million in the U.S. and £1.5 million ($2.4 million) in the U.K. The lifetime costs of caring for individuals who are not impacted by intellectual disability are $1.4 million in the U.S. and £917,000 in the U.K. (equivalent to $1.46 million). The Autism Speaks-funded research, conducted by researchers Martin Knapp, Ph.D., of the London School of Economics, and David Mandell, Sc.D., of the University of Pennsylvania, will be presented at the international conference “Investing in our Future: The Economic Costs of Autism,” hosted by Goldman Sachs Hong Kong in collaboration with the Child Development Centre and Autism Speaks, on March 31 in Hong Kong.

Drs. Knapp and Mandell compiled information from recent studies of autism costs from multiple sources to calculate the current cost of autism associated with the current CDC-reported prevalence that 1:110 children are diagnosed with an autism spectrum disorder (ASD). The cost of autism continues to grow with the rise in prevalence. While the latest prevalence estimates in the U.S. and U.K. are comparable, the primary difference in total costs of autism in the U.S. and U.K. are due to differences in total country population (five times larger in the U.S. than the U.K.).The research team found that the cost of autism in the U.S. alone is greater than the entire Gross Domestic Product (GDP) of 139 countries around the world.

Bob Wright, co-founder of Autism Speaks, said, “Autism is a global public health crisis. The costs are staggering and will continue to rise as prevalence continues to increase. We know that early diagnosis and treatment are critical, so it is imperative that the U.S. and governments around the world step up their commitment to helping people living with autism today. The investment we make now is essential to reducing the long-term costs of autism.”

This research found that intellectual disability plays a major role in the cost of autism to individuals, families, and society as a whole. The costs of autism per year are nearly twice as high on average for children and adults with intellectual disability than for children and adults without intellectual disability, $2.3 million in the U.S. and £1.5 million in the U.K. ($2.4 million) for those individualswho are impacted by intellectual disability compared with more than $1.4 million in the U.S. and£917,000 ($1.46 million) in the U.K. for those who do not have intellectual disability.

A number of factors were considered by the researchers that contributed to the cost differential between U.S. and U.K. lifetime and total costs. The education and healthcare systems in the two countries offer different responses to the needs of people with autism and their families. Access to empirical data regarding healthcare and education costs differed between the two countries. It is also currently estimated that 45 percent of individuals with ASD in the U.S. and 55 percent of individuals with ASD in the U.K. have intellectual disabilities, defined as an IQ of 70 or less. Experts consistently point to early interventions as key to increasing language and IQ scores, and reducing life span costs.

Total costs to the U.S. were also based on adult prevalence of one-half of one percent, lower than currently estimated 1:110 prevalence of autism in children, derived from past CDC studies. The researchers point to adult prevalence as an area for additional study in the U.S.

The research also found that non-medical costs account for the greatest proportion of expenses. While direct medical costs, such as outpatient care, home care, and pharmacy, contribute significantly to overall expenses, non-medical costs, including intervention services and special education, child daycare, and especially residential placements and care for adults who age out of school and can no longer live at home with parents account for the largest proportion of autism costs.

“The burden on families affected by autism is enormous,” continued Autism Speaks President Mark Roithmayr. “The extraordinary cost further exacerbates that burden. The time and effort involved in coordinating the care and treatment plan across a large number of providers has reduced the ability of many families to earn a living. Too many families are still denied insurance coverage for essential treatments and services, and the economics add to overall emotional burden on families.”

Building on this preliminary research, Autism Speaks recently provided additional funding to Drs. Knapp and Mandell to support an additional year of study to examine how autism therapies reduce lifetime costs associated with autism. Their investigation will focus on both intensive preschool behavioral interventions and vocational interventions that support an individual’s independence during the transition to adulthood. Calculations will take into account costs related to healthcare, education, caregiving, housing, and employment.

As confirmed by this study, the majority of costs related to autism are incurred during adulthood, principally due to the cost of residential care as well as loss of productivity, underemployment and unemployment among adults with autism. Services for adults are both lacking and expensive.

In 2007, Michael L. Ganz, Ph.D. of the Harvard School of Public Health published research in the journal Archives of Pediatric and Adolescent Medicine which estimated that autism cost the United States more than $35 billion per year, and that the incremental cost of caring for an individual with autism over his or her lifetime due to their special needs was more than $3 million. Despite growing prevalence, autism currently receives less than five percent of the research funding of many less prevalent childhood diseases and disorders.

Dr. Mandell added, “We are paying for the costs of inaction and the costs of ‘inappropriate action.’ Social exclusion of individuals with autism and intellectual disability, and exclusion of higher-functioning individuals from employment opportunities are increasing the burden not only on these individuals and their families, but on society as a whole.”

Dr. Mandell and his colleagues recently published findings in Pediatrics that mothers of children with ASD are less likely to work, work fewer hours per week and earn substantially less. Typically the primary caregiver, mothers are called upon to serve as their child’s case manager and advocate, and on average, earn 56 percent less than mothers of children with no health limitations. They earn 35 percent less than mothers of children with another health limitation. They are 6 percent less likely to be employed, and they work an average of seven hours less per week.

Dr. Knapp, Professor of Social Policy at the London School of Economics and Political Science and a preeminent expert on health economics explained that the economic burden of autism varies widely across different parts of society from the individuals with ASD, their families, the communities they live in, businesses in those communities, to the government agencies which provide healthcare, education, welfare benefits, social care, and housing. “There is an immediate need for better coordination across public agencies and levels of government from local to national in the way that society structures its service delivery system; too often responses to the needs of individuals and families are piecemeal and less helpful than they could be,” he concluded.

This research was wholly funded by Autism Speaks. The World Health Organization (WHO), through its partnership with Autism Speaks, is serving in an advisory capacity and providing technical support for the cost of autism analysis.

About Autism

Autism is a general term used to describe a group of complex developmental brain disorders – autism spectrum disorders – caused by a combination of genes and environmental influences. These disorders are characterized, in varying degrees, by social and behavioral challenges, as well as repetitive behaviors. An estimated 1 in 110 children in the U.S. is on the autism spectrum – a 600 percent increase in the past two decades that is only partly explained by improved diagnosis.

About Autism Speaks

Autism Speaks is the world’s leading autism science and advocacy organization. It is dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. Autism Speaks was founded in February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Mr. Wright is the former vice chairman of General Electric and chief executive officer of NBC and NBC Universal. Since its inception, Autism Speaks has committed over $173 million to research and developing innovative resources for families. Each year Walk Now for Autism Speaks events are held in more than 95 cities across North America. To learn more about Autism Speaks, please visit www.autismspeaks.org.

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