Autism Reality

(Some) Maine Parents of Children with Autism Embrace DAN Treatment Protocol

The Bangor Daily News is reporting on Maine parents of autistic children who have embraced the DAN protocol for treating their autistic children. The article provides testimonials from parents who endorse the DAN treatment protocol and quotes and references from authorities which describe the DAN protocol as “voo doo” science. The article is a balanced presentation of a controversial autism subject and is accompanied by a companion article reporting on the 1 in 150 prevalence figure and the mainstream recommendations for ABA treatment with judicious use of pharmaceutical applications.

http://bangornews.com/news/t/news.aspx?articleid=147858&zoneid=500

http://bangordailynews.com/news/t/news.aspx?articleid=147862&zoneid=500

Maine parents embrace controversial treatment model for autistic children

By Meg Haskell

Saturday, March 24, 2007 – Bangor Daily News

Their DAN! protocols are based on the premise that autism develops in individuals with a genetically heightened intolerance of certain foods and common environmental toxins.

In these individuals, the theory suggests, prenatal exposure through the mother’s diet, medications, dental fillings and other sources, combined with the onslaught of vaccines, antibiotics and other substances commonly experienced by babies and young children, set off a self-perpetuating metabolic storm. The result is the range of neurological symptoms and behavior associated with autism-related disorders.

DAN! practitioners believe that by interrupting this storm and eliminating the substances that triggered it, individuals can regain their neurological health. The special diets, supplements and other remedies DAN! practitioners prescribe are designed to accomplish this.

Among conventional medical practitioners and others in the field, the DAN! approach is at least controversial and often divisive.

“Anyone who’s talking ‘cure’ is talking fraud,” said Vincent Strully, founder and executive director of the New England Center for Children in Southborough, Mass.

In a recent telephone interview, Strully said parents who elect to follow the DAN! protocols are gambling with their children’s future by investing time, energy and money in an unproven treatment that builds false hope and is based on “voodoo science.”

Despite its endorsement by some well-intentioned medical professionals, Strully said, DAN! is just one of a number of short-lived pseudoscientific fads developed in recent years to capitalize on parents’ desperation.

Parents who wish to enroll their autistic children in his ABA-based education and research program must specifically agree not to dabble in such treatments.

Dr. Don Burgess, president of the Maine Chapter of the American Academy of Pediatrics, is more conciliatory. Burgess, who practices in Kennebunk, emphasized that a link between autism and vaccines has never been proven, and that even though most vaccines no longer contain mercury, rates of autism continue to climb.

The lack of well-designed research studies on the safety and effectiveness of DAN! and similar approaches is disturbing, Burgess said, but he understands parents’ need to explore alternatives for their autistic children.

Dietary changes overseen by a physician or nutritionist are unlikely to hurt children and may even prove helpful, Burgess allowed.

But chelation is potentially dangerous and should be avoided except in cases where a child’s blood level of mercury or lead is extremely high, he said.

From up in Aroostook County, Deb Lipsky says DAN! is “a bunch of bunk.” Diagnosed with high-functioning autism just 1½ years ago, Lipsky, 45, has emerged as a popular national speaker and first-hand expert on living with autism. She also facilitates a Bangor support group for parents and others affected by the disorder.

Lipsky, who lives in Linneus, said ABA and other behavioral models “work beautifully” for many children and adults with autism. The group she runs is accepting and supportive of whichever treatments parents explore, she said, but will not tolerate fanaticism.

True believers

Parents who embrace DAN! don’t see themselves as fanatics — just truth-tellers.

“We need to get the message out that autism is a treatable illness,” declared Belfast resident and DAN! mother Tina Frank.

Frank leads a local support group for mothers who, like her, follow the DAN! protocols. The group is called MIMRAC — Moms in Maine Recovering Autistic Children. Laura Plourde, who now works for Fredric Shotz in Portland, is a regular visitor to the Belfast meeting and also runs a similar group in Portland.

Frank’s 5-year-old son, Jeffrey, was diagnosed with autism when he was 3 but is now “nearly cured,” she said, thanks to the intensive interventions prescribed and monitored by Shotz.

She and the other mothers in the Belfast group are undaunted by the lack of double-blind studies or peer-reviewed articles about DAN! in mainstream medical journals.

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March 24, 2007 Posted by | Applied Behavior Analysis, autism disorder, DAN Protocol, Maine | Leave a comment

Layton, Stoffer Slam Zero Conservative Support for Autism




NDP leader Jack Layton and NDP MP Peter Stoffer have slammed the Harper Conservatives for failing to provide any funding whatsosever for autism in its recent federal budget. The Conservatives did not ante up a single penny for autism.

Meanwhile Mike Lake, the Conservative MP and father of an autistic child, who opposed the Shawn Murphy attempt to ensure autism coverage in the Canada Health Act, has not offered any public comment on the failure to provide a single penny for autism in his party’s budget. Emails sent to his office are responded to by a staffer who informs that Mr. Lake has received too many emails on the subject of autism to respond personally.

http://www.ndp.ca/page/5057

Stoffer slams federal government for not providing autism funding in budget

Fri 23 Mar 2007

OTTAWA – NDP Leader Jack Layton and Peter Stoffer (Sackville-Eastern Shore) slammed the federal government today for not providing funding in the federal budget to help families with autistic children.

“Families with autistic children are in crying need of support,” said Layton. “They are very disappointed that the Conservative government has ignored their needs in the budget. Providing support for these families should be a bigger priority for the federal government than corporate tax cuts.”

“It is also hypocritical that the Harper government is ignoring the autism motion M-172 passed by the House of Commons last December,” said Stoffer. “When Harper was in Opposition, he constantly criticized the Liberal government because it did not respect the votes of the House of Commons. It is surprising how quickly the Conservatives have become just like the Liberals.”

M-172 requires the federal government to work in cooperation with the provinces and territories to establish national standards for treatment and delivery of services, study funding arrangements, create a national surveillance program, and provide more funding for health research on autism.

“The federal government must work with the provinces and territories to find a way to include autism therapy in the health care insurance plan of every region across this country,” said Stoffer. Stoffer introduced a private members bill (C-211) to this effect last fall.

Stoffer also expressed his profound disappointment with the federal government in failing to recognize the Veterans First Motion and ignoring the issue of Agent Orange and Agent Purple in the budget. The Veterans First motion was passed in November 2006 and suggested five key reforms that would deliver long overdue fairness and security for Canadian Forces veterans and their families.

“With a $14.2 billion dollar surplus, how can the federal government not provide more funding and services for families with autistic children and for veterans and their families? It is absolutely shameful. It is time for the federal government to be proactive in the lives of Canadian families living with autism.”

March 24, 2007 Posted by | autism, budget, Canada Health Act, Jack Layton, Mike Lake, NDP, Peter Stoffer, Stephen Harper | 2 Comments

Leadership Counts; Thank You Autism Speaks

Leadership counts.

Autism Speaks has filled a leadership vacuum with its effective leadership on behalf of autism. Autism awareness and funding for autism research will be raised by Autism Speaks walks across North America. The public communications power of entertainment and political stars such as Senator Hillary Rodham Clinton, Toni Braxton, Bill Cosby, Jerry Seinfeld, Paul Simon and many others, has been harnessed to raise awareness and funds for research. Legislative initiatives such as Senator Clinton’s recent Expanding the Promise initiative in the US Senate have been undertaken. The Autism Every Day video featured at the Sundance Film Festival has helped the world move past the Rain Man/Savant stereotypes and understand some of the harsher realities faced by many autistic persons and their families.

As the parent of a profoundly autistic 11 year old boy in New Brunswick Canada I have been involved in autism advocacy for 8 years. Lack of knowledge by important government decision makers and by members of the public has been a huge obstacle to overcome in trying to improve the life prospects of autistic persons in our neck of the woods. The incredible media power of Autism Speaks, the focus on doing something positive for persons with autism, has helped, and will continue to help all of us fighting for improved treatment, education and residential care for persons with autism – wherever we live.

Thank you Autism Speaks.

March 23, 2007 Posted by | autism disorder, autism speaks, Bill Cosby, Bob Wright, Hillary Clinton, Suzanne Wright, Toni Braxton | Leave a comment

Senators Clinton and Allard Expanding the Promise for Individuals With Autism

The Autism Cause picked up more heavyweight support with the introduction by US Senators Hillary Rodham Clinton and Wayne Allard of a legislative proposal which would expand services for autistic persons of all ages. The struggle to raise awareness about autism, and obtain effective evidence based treatment and education services for autistic children, has dominated public advocacy and attention in the US and Canada. This effort by Senators Clinton and Allard draws much needed attention to the needs of autistic persons of all ages including adults. Autism Speaks has also announced that Senator Hillary Rodham Clinton will serve as the honorary chair for the fifth annual Westchester-Fairfield Walk for Autism Research on Sunday, June 4.

Senators Clinton, Allard Unveil Legislation to Expand Access to Treatment, Interventions and Support Services for People with Autism

March 20, 2007 — Washington, DC – At a press conference on Capitol Hill, Senators Hillary Rodham Clinton (D-NY) and Wayne Allard (R-CO) today joined with autism advocacy groups to unveil a new legislative initiative to expand access to treatment, interventions and support services for people with autism. The Expanding the Promise for Individuals with Autism Act (EPIAA) will provide initiatives and establish demonstration grant programs to enable people with autism and their families to live richer, fuller lives. Senators Clinton and Allard were joined by Bob Wright, Co-Founder, Autism Speaks; Lee Grossman, President and CEO of the Autism Society of America; George Jesien, Executive Director, Association of University Centers for Disabilities and Alison Singer of Scarsdale, New York, parent and sibling of individuals with autism.

“It is a tragedy when children and adults with autism are not able to fully participate in their communities because they cannot access the services that would allow them to do so. The more we learn about autism, the more hope we have for treatment and the more tragic inaction becomes. This epidemic requires our smartest, best, comprehensive response and we must continue our efforts to provide treatment, care, greater research and understanding of autism spectrum disorder,” said Senator Clinton.

“With more individuals being diagnosed with autism, and medical research demonstrating the importance of early intervention, I am pleased to support this bill, which will provide the critical funding and programs necessary to provide early diagnosis, treatment and services for autistic children, adults and their families,” said Senator Allard.

“This bill specifically addresses the most critically important issue to the autism community today – obtaining appropriate services across the lifespan,” said Lee Grossman, President and CEO of the Autism Society of America (ASA). “Our families and individuals with autism are pleased that their voices have been heard by Senators Clinton and Allard, and encourage their Senate colleagues to support EPIAA.”

“We thank Senator Clinton for her remarkable leadership in spearheading this legislation that has the potential to deliver real and meaningful change for millions of individuals and families impacted by autism,” said Bob Wright, co-founder of Autism Speaks.

In the United States, one out of every 150 children has an autism spectrum disorder, and prevalence is on the rise. The range and severity of symptoms of autism vary from case to case, but symptoms often include difficulties in communicating, interacting with other individuals and sensory processing. The care involved in treating these symptoms often requires hours of intensive therapy every week – regimens that are often inaccessible to many families.

The Clinton-Allard bill will expand access to treatment, interventions and support services for people with autism and their families by:

Establishing a Demonstration Grant Program to Assist States with Service Provision. The Clinton-Allard bill will provide grants to states to help them provide evidence-based treatments, interventions and services.

Developing a Demonstration Grant Program for Adult Autism Services. While early diagnosis and intervention services are critical for children with autism, the need for intervention and services continues across the lifespan. To help address the needs of adults living with autism, the Clinton-Allard bill will establish a demonstration grant program to help provide appropriate interventions and services to adults with autism. These grants will go to states to provide appropriate interventions and services, such as housing or vocational training, to adults with autism.

Increasing Access to Services Following Diagnosis. Many children and families must wait months before gaining access to appropriate treatment after receiving a diagnosis of autism. To decrease this post-diagnosis waiting period, the Clinton-Allard bill will mandate that the Secretary of Health and Human Services develop guidelines to increase the amount and quality of post-diagnosis treatments, interventions, and services. The guidelines will also eliminate delays in access to supplementary healthcare, behavioral support services, and individual and family-support services through Federal and State funded programs.

Increasing Support for Developmental Disabilities Centers of Excellence. Many families report difficulties in accessing services because of the limited number of health and education professionals who are trained to provide autism-specific services. To increase the number of individuals across sectors that can provide adequate care and treatment services for individuals living with autism, the Clinton-Allard bill will increase the capacity of University Centers for Excellence in Developmental Disabilities Education, Research and Service to train professionals in meeting the treatment, interventions and service needs of both children and adults living with autism.

Examining Issues of Financing for Autism Services. The Clinton-Allard bill will require the Government Accountability Office (GAO) to study the financing of autism treatment and services, including current public and private insurance coverage for autism treatment and support services, and identify geographic and regional disparities in access to care. The GAO will make recommendations as to how to finance treatment and care services to remove both cost and geographic barriers and attain a uniform baseline of coverage across the United States.

Improving Protection and Advocacy Services. Last year, thousands of individuals with autism were unable to access already-existing protection and advocacy services due to a lack of resources. The Clinton-Allard bill will create a program to expand these services to assist individuals with autism and other emerging populations of individuals with disabilities to meet the growing need for advocacy services among individuals with autism.

Improving Technical Assistance and Evaluation. The Clinton-Allard bill will enable the Secretary of Health and Human Services to establish a National Technical Assistance Center for Autism Treatments, Interventions and Services to serve as a resource for parents and service providers. The organization will have experience in training, research translation, and service provisions. It will also analyze the grant programs under this Act and provide information about these programs to the public.

Source: Senator Hillary Clinton

http://www.autismspeaks.org/press/hillary_clinton_walk.php
http://www.allamericanpatriots.com/m-news+article+storyid-21569.html

March 22, 2007 Posted by | autism disorder, autism speaks, Expanding the Promise, Hillary Clinton | Leave a comment

Grand Opening – Atlantic Behavioural Centre – Moncton, NB

Grand Opening Celebration

“Children become that which they do and
get better only at that which they practice.” – Aristotle.

You are cordially invited to attend the Grand Opening of the Atlantic Behavioural Centre. The event will be held at our centre’s new location – 700 St George Blvd, Moncton – Saturday March 31st from 12:00 to 5:00 pm. We hope that you will join us in celebrating this new endeavor.

The Atlantic Behavioural Centre was established in 2005 as a private group that consists of a clinical team of administrators, clinical supervisors, psychologists, resource teachers, occupational therapist, behavior therapists, and volunteers. The Centre provides individualized educational programs based on researched principals of applied behaviour analysis to children with neurodevelopmental disorders, namely Autism Disorder and Asperger.

The clinic first opened its doors as a private practice in psychology in 1998 serving the needs of children, adolescents and their families in the South Eastern part of New Brunswick. Over the years, this practice has developed a specialization in the assessment and treatment of disorders such as Autistic Spectrum Disorders, Language and Communication Disorders, Learning Disorders, ADHD, Oppositional Defiant Disorders, Conduct Disorders, and other disorders of childhood development.

We are very pleased to be able to increase the services provided and are committed to raising the bar in the treatment of autism. We look forward to seeing you at our Grand Opening.

Sincerely,

Suzanne Durepos, M.A.Ps., L. Psych.
Clinical Director

March 21, 2007 Posted by | Applied Behavioural Analysis, Aspergers' Syndrome, Atlantic Behavioural Centre, autism disorder, autism treatment | Leave a comment

Will Michael Lake, Harper’s Autism Front Man, Resign from Conservative Caucus?



March 21 2007

Michael Lake
MP, Edmonton

Dear Mr. Lake

As the parent of an 11 year old boy with Autism Disorder living in New Brunswick I was very disappointed in you, as the father of an autistic child, acting as a front man for the Harper government in the defeat of Charlottetown MP Shawn Murphy’s private member bill calling for amendments to the Canada Health Act. That bill would have ensured that autistic children would have received much needed ABA treatment regardless of where they live in Canada. Families would not have to move to your home province of Alberta to ensure receipt of services as they are now doing in significant numbers. Members of the Canadian Armed Forces, and other national organizations, with autistic children would not be turning down postings to New Brunswick as they are now doing.

As an autism parent you were of great use to Mr. Harper; you were on full display as the father of an autistic child in fighting AGAINST a measure that would have helped so many autistic children, regardless of where they lived in Canada. Of course if you were from one of the poorer provinces with little in the way of funded treatment for autism, rather than affluent Alberta with its well funded treatment, your role in the Conservative-Bloc Quebecois defeat of measures for autism could have been even more prominent.

As it was you claim to have stood on principle. You claimed that it was contrary to the provinces’ constitutional jurisdiction over health care for the federal government to help autistic children across Canada. That is why I am sure you are upset over the budget announcement by Finance Minister Flaherty that the Harper government would fund the creation of a Canadian Mental Health Commission. It must be very difficult for you, the autism dad who fought against a national autism strategy, in order to defend the sanctity of provincial jurisdiction over health care, to see your own party now turn on you and violate that principle by the creation of a Canadian Mental Health Commission.

Will you be resigning from the Conservative caucus to sit as an Independent?

Respectfully,

Harold L Doherty
Fredericton New Brunswick

March 21, 2007 Posted by | autism disorder, Canada Health Act, Mike Lake, Shawn Murphy, Stephen Harper | Leave a comment

Harper Budgets $0 for Autistic Canadians



StatsCanada estimates that Canada’s population will hit 32,950,734 by July 1, 2007. With the CDC figure of 1 in 150 persons having an autistic disorder there are approximately 219,672 autistic Canadians. Many autistic persons require expensive health, education and residential care services. For Autistic Canadians Prime Minister Harper’s government set aside the grand sum of …… $0

Some lesser politicians might have tried to fake it and pretend that they were concerned about Canada’s autistic population. Stephen Harper, to his credit, does not try to pretend. He does not give a damn about your autistic loved one and he does not care who knows it. He does, at least, have the virtue about being honest about his disregard for autistic Canadians.

$O. Thank you so much Mr. Harper.

March 20, 2007 Posted by | autism disorder, autism education, budget 2007, Canada Health Act, residential care, Stephen Harper | Leave a comment

FEAT-BC Responds to Condescending Peace Arch News Editorial

Peace Arch News Editorial: “Help Pleas”

Mar 06 2007

Politics can seem a blood sport at times, but it doesn’t mean all the players would be wise to get dirty.

Take the most recent dispute over the Canada Health Act.

Parents of children with autism have been demanding for years that two types of treatment be funded – applied behavioral analysis and intensive behavioral intervention. They report that these treatments have proven successful in 40 per cent of autistic children, and therefore should be covered under the Canada Health Act.

A Feb. 21 vote in the House of Commons defeated a private member’s bill, C-304, that was purportedly intended to include these procedures in the act. The bill failed 155-113, with parents raking over the coals the Conservative MPs who voted against it.

Some vowed retaliation at the polls. Others angrily called individual MPs derogatory names. Some question the integrity of anyone who does not support this particular bill.

The MPs who voted against, including Russ Hiebert (South Surrey-White Rock-Cloverdale), said the wording of the bill would undermine the Canada Health Act, as well as the provincial governments that are supposed to govern our health system. By naming autism as the only affliction or disease in the act, the bill is “flawed.”

The parents’ argument is sympathetic. They are the ones on the frontline, trying their best to deal with their child’s disability and provide support.

And the Conservative argument, albeit legally sound, does little to help this distressful situation.

The parents, however, could also do more to advance their cause. No one should judge them for taking this issue personally. Nothing would be more personal than getting in between a parent and a child’s well being.

But by wading into the political arena and throwing muck on politicians with name calling and aspersions, they risk putting off objective members of the public who might support the cause.

Gaining this support is integral to finding a solution. Perhaps a bill will come forward that guarantees the treatment of all citizens with any serious disability, without naming specific afflictions.

Or perhaps it will be decided that provincial representatives are at the only political level that can effect change.

The parents can help find the solution, but only if their pleas fall on sympathetic ears.

F.E.A.T. of B.C’s Response To The Editorial

March 10, 2007

Editor,
Peace Arch News.

Dear Sir:

Re: “Help Pleas”

Your March 6th editorial concerning the emerging political involvement of parents who have an autistic child or children indicates clearly that you simply don’t “get it”. You’re stuck in an outmoded, and unhealthy, understanding of the relationship between those who would govern and those who are to be subject to such governance.

Canadian citizens have long ceased to be vassal-like supplicants, bowing their heads and tugging at their forelocks as their betters instruct them on what they might expect to receive by way of ex gratia beneficence from the all powerful State. It is not only the right but the duty of all Canadian citizens and, in particular, parents of disabled children to demand responsive performance from their elected representatives. If one or another bloviating politician fails to meet the expectations or betrays the trust of their electors, they deserve to be summarily consigned to the ash can of history. We have a moral obligation to rid the body politic of these less than useless individuals.

You claim the federal Conservative’s position is “legally sound”. Wrong again. The Supreme Court of Canada, in its 2004 Auton decision, told parents of autistic children that they must look to parliament for a solution to their demands. The operative statement of the relevant law, however, remains that of Justice Saunders, of the BC Court of Appeal, who stated, in Auton, that autism is a “socially constructed handicap”. What a damning indictment of our politicians and their backroom or bureaucratic advisors.

You suggest that parents of autistic children who wade into the political area risk “putting off objective members of the public who might support the cause”. Again, you’re way off base. Shortly after the Supreme Court’s watershed decision in Auton, an Ipsos-Reid poll found that fully 89% of Canadians supported Medicare coverage for the treatment of autism. It is only our myopic political class, superbly manipulated in “Yes, Minister” fashion by the blinkered bureaucracy, that opposes a fair and equitable solution to this pressing public policy issue.

Over the past decade, parents of autistic children have spent countless hours in futile meetings with elected representatives and senior bureaucrats, and have spent yet more time, and money, battling with one government or another before the courts. We are now doing what the Supreme Court of Canada has told us to do: we’re getting political.

You claim that parents’ pleas must fall on sympathetic ears in order for them to succeed in their quest for justice for their children. Wake up! This is 21st Century Canada. We’re through with pleading to anyone, let alone people whose salaries we pay. Either existing MPs, regardless of partisan affiliation, respond to reasonable demands being made on behalf of our children or we will move Heaven and Earth to replace them with others who will do so. That’s not a threat, it’s a promise.

Yours sincerely,

Jean Lewis,
Founding Director, FEAT-BC

March 20, 2007 Posted by | autism advocacy, autism awareness, autism disorder, autism treatment, politics | Leave a comment

Autism Is a Disorder, Not Just a Different Order

Denial is one of the first problems encountered by parents of newly diagnosed autistic children. The challenge of facing up to the reality of an autism diagnosis for your child is huge. Once a parent gets past the denial stage they must deal with helping their child to the fullest extent possible. There is no doubt amongst those who seriously seek improvement in the abilities of their autistic children to live a full and happy life that intensive early intervention is absolutely necessary. Nor is there any serious doubt that behavioral intervention is the only evidence based intervention currently available to help your child. But for the parent starting out on that effort you will receive some misleading signals from advocates of the “neurodiversity” movement. Although much of the rhetoric emanating from the neurodiveristy direction is confused and contradictory, in its essence neurodiversity states that “autism is not a disorder, just a different order” to use the words of a high functioning autistic person who called into a CBC radio talk show on the subject of autism.

The neurodiversity movement, if it presented the positive attributes of people who happen to be autistic, or presented the whole picture of autistic persons on all points of the spectrum, could be a positive force for bettering the lives of autistic persons. But it does not do these things. What the neurodiversity movement tries to do, at its heart, is convince the world that autism is not a disorder. Part of this effort involves demonizing anyone who describes some of the unpleasant truths associated with some cases of autism. This occurs when such unpleasant topics as feces smearing, self aggression or other acts of violence are discussed realistically by parents such as the courageous parents of the Autism Every Day video.

We have experienced these unpleasant truths in our household. Our autistic son, Conor, is a joy, a blessing. The numerous posts on this blog site about Conor present the joyful element of our son. But the reality is that he also can become aggressive, pulling on his mother’s hair suddenly or biting. These are truths, unpleasant truths but truths nonetheless. Our furniture is largely in shambles with legs broken off chairs, mirrors shattered, cabinet and closet doors unhinged, keys removed from computer keyboards. I have experienced an arm coming suddenly around my neck from behind while driving the family car.

Describing such truths is not dehumanizing our son as the neurodiversity authors, would have you believe. It is speaking the truth and describing the facts as they are not as we would wish them to be. It is not a violation of Conor’s human rights to describe him, and his autism disorder, in honest realistic terms. To the contrary, it would be a gross violation of his human rights to disregard the challenges he confronts by virtue of being autistic and failing to take steps to remedy those challenges using interventions judged effective based on the best available evidence.

The neurodiversity movement is proud of those high functioning autistic persons who can write lengthy articles on internet sites, speak to courts and legislatures, and make interesting interesting internet videos. It also likes to embrace and diagnose as autistic historical figures of great intelligence such as Albert Einstein. But the neurodiversity, autism acceptance, movement does not like to talk about lower functioning autistic persons or the very real challenges faced by families who actually care for and live with lower functioning persons. Worse that that, as the Autism Every Day parents, and a host of other parents trying to help their autistic children have discovered, they do not want anyone else to talk about these realities either.

The neurodiversity movement does not represent the views of all autistic persons. It represents the views of SOME autistic persons, some, not all, high functioning autistic persons. These individuals, and the handful of misguided professionals who adopt their point of view, would have you believe that there are no low functioning autistic persons, that it is wrong to even use such terms as high functioning or low functioning. They do not want to acknowledge that some autistic persons are intellectually impaired. They do not want to talk about the autistic persons who actually live in institutions around the world in less than pleasant conditions, including here in New Brunswick Canada.

At its heart neurodiversity is an internet movement based on a group of people who share in common a diagnosis of a medical disorder – autism – but who refuse to accept that autism is a disorder. Neurodiversity is for this reason inherently a contradiction but one that can be very misleading in the view of autism that it presents to the world.

The DSM-IV diagnostic criteria:

# A total of Six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3).

1. qualitative impairment in social interaction, as manifested by at least two of the following:
1. marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
2. failure to develop peer relationships appropriate to development level
3. a lack of spontaneous seeking to share enjoyment, interest, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
4. lack of social or emotional reciprocity

2. qualitative impairments in communication as manifested by at least one of the following:
1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alterative modes of communication such as gesture or mine)
2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
3. stereotyped and repetitive use of language or idiosyncratic language
4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

3. restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
2. apparently inflexible adherence to specific, nonfunctional routines or rituals
3. stereotypes and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
4. persistent preoccupation with parts of objects

# Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.

# The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder

Autism is a different order but it is also very much a disorder. The DSM-IV says so. My life experience with my profoundly autistic 11 year old son confirms for me that fundamental truth.

March 19, 2007 Posted by | applied behavioral analysis, autism disorder, autism every day, DSM-IV, neurodiversity | 3 Comments

The Autism Knowledge Revolution

We are living in a revolutionary era. The hardware era is giving away to the software age, and as a result, the economic and social landscape of the world is undergoing seismic changes. The Knowledge Revolution, Noel M. Tichy, Ph.D., 2002

The world is awakening now to another knowledge based revolution – the revolutionary explosion in our knowledge of autism disorders. Like other revolutions the Autism Knowledge Revolution also promises to be seismic in its impact. Recent autism reports have brought news of the Autism Genome Project with studies providing new information about the genetic bases of autism disorders. Gene mutations are being identified as the cause of some instances of autism. A new study suggests that the amygdala, a part of the brain associated with emotional learning and fear, shrinks in people with autism, as a result of chronic stress caused by social fear in childhood.

Like other revolutions there are those who fear the onset of the Autism Knowledge Revolution and its impact. They stand on principle and cloak their fears in the mantle of human rights. Fear mongering is already spreading in relation to genetic research in autism with wild speculation about what the purveyors of such fear describe as a eugenics program similar to some of history’s worst atrocities. Others express a more practical fear; that our rapidly increasing knowledge in the genetics of autism will be of no value to older autistic children and adults. As the father of a severely autistic 11 year old boy I understand that particular fear but I do not believe that genetic research will yield only clues to prevention of autism occurrence or education of the very young. It is quite possible that our knowledge of autism disorders will assist in understanding how autism works in all individuals with an autism disorder and that may lead to new ways of understanding autistic persons and how to enhance their lives.

Hopefully one result of the Autism Knowledge Revolution will be the end of some of the needless hostility surrounding the vaccine/mercury autism debate. The believers in the Mercury Theory have clung to their theory with almost no scientific support and have resorted in desperation to belief in a world wide conspiracy involving “big pharma”, big government and a “bought and paid for” world science community doing the bidding of Big Pharma. Some opponents of the Mercury Theory have been just as virulent and would censor any reference to autism as a disorder, disease or medical condition by any term. More research, more knowledge, may well show some environmental factors in the onset of autism, mercury based or otherwise. Or it may disprove conclusively any such connections.

The future holds promise but never provides promises or guarantees. Some of the research currently under way may lead to dead ends; part of the scientific process of elimination. But the increase in knowledge of autism will undoubtedly increase our uderstanding of autism. Surely a good thing in and of itself.

The autism knowledge revolution does provide hope, hope of a cure for those who seek it for themselves or their loved ones. It is a hope based not on resignation or “acceptance of autism”. It is a hope based on solid scientific research as most of our advances of the last 300 years have been. There are no limits at this time on where this knowledge might lead. While concern that it will not assist older autistic persons is understandable it does not automatically follow that such research will be of no benefit to them and all autistic persons, regardless of age.

Those of us who are not ourselves scientists, and do not imagine ourselves to be scientists, can still assist by involvement in organizations, such as Autism Speaks, and CAIRN (Canadian Association Intervention Research Network), which have been such powerful positive forces in the advancement of autism research.

We can all lobby, create public awareness and raise funds.

We can all join the Autism Knowledge Revolution.

March 18, 2007 Posted by | autism, Autism Genome Project, Autism Knowledge Revolution, autism research, autism speaks, CAIRN, mercury | Leave a comment