Showing posts with label autism treatment. Show all posts
Showing posts with label autism treatment. Show all posts

Tuesday, June 09, 2015

Canada Needa a Real National Autism Strategy: Exhibit #1 Saskatchewan



Saskatchewan is Exhibit #1 In the Case for a REAL National Autism Strategy

Canada has long needed a REAL National Autism Strategy, one which includes coverage of autism in medicare to ensure that children with autism disorders received treatment for their autism disorders regardelss of which province their  parents live in. One of the most glaring examples of the need for national autism medical coverage is in the province I once called Canada's Autism Wasteland  province.   Since that commentary on September 2, 2007  little progress appears to have been made judging by the Global story by Amber Rockliffe: Saskatchewan families moving due to lack of autism funding.  Rockliffe reports of  Saskachewan families leaving the province to find treatment for their children's autism disorders; treatment which is not available because of long wait lists and is not usually delivered  in sufficient hours to make a substantial difference in treating their children's autism. 

One of those families that has already made the move is the family of Sheri Radoux:

Sheri Radoux, has moved south of the U.S. border to Minnesota. “I think the services in Saskatchewan are probably the worst, or one of the worst in Canada, “said Radoux. “We moved down to Minnesota and we got full-time therapy for all our children, paid and funded by the state.”

The Rockliffe report goes on to indicate that Saskatchewan spends half, approximately $7.5 million annually, compared to approximately $15 million, that   Manitoba, with a similar population, spends annually on autism services.

Families leaving provinces, including the province many would consider the birthplace of medicare in Canada, to seek a better life for their autistic children in jurisdictions provincial and American  where a greater value is placed on the lives and futures of autistic children.

Yes, Canada needs a REAL National Autism Strategy.

Thursday, February 26, 2015

19 Year Old Non Verbal Autistic Man Evicted From Miramichi Special Care Home Because He Is An Adult



Huge gaps remain n New Brunswick's adult autism residential care and treatment system. An autism specific residential care and treatment centre and autism specific group home system is needed to bridge those gaps. 


HON. CATHY ROGERS
Minister of Social Development

HON. VICTOR BOUDREAU
Minister of Health

HON. BILL FRASER 
MLA Miramichi 

HON. STEPHEN HORSMAN
MLA Fredericton North

As an autism advocate for over 15 years in New Brunswick (and father of a 19 year old severely autistic son) I was saddened, though not at all surprised, to read the report by Samantha Magee of the  Miramichi Leader of a 19-year-old, non verbal autistic man whose family was informed by Social Development on Feb 9 that he would not be able to remain in his special care accommodations in Miramichi: after February although he has been given a reprieve until March 31. The Leader reported that his transition to adulthood was the reason for the forced departure:

"Bob Daley, residential services manager for M.O.R.E. Services Inc., said in an emailed statement to the Miramichi Leader that the issue is related to Brandon’s age and funding.
“For a number of years, M.O.R.E. Services has been providing a children’s service in the upstairs apartment of the home in question. When a resident reaches the age of 19, they are no longer considered a child and therefore receive services through adult programs,” he said."
I have been involved with public autism advocacy in New Brunswick and Canada  for over 15 years.   I know that there have been several high profile incidents of youths and young men being sent to the Spurwink facility in Maine at considerable public expense because autism specific treatment and residential accommodation including drops off between the ages of 15 (Stan Cassidy Autism Centre) and 19. 

Concerns over the lack of adult autism treatment and care facilities have been presented to successive governments for over a decade.  A proposal by distinguished autism expert, clinical psychologist and UNB professor emeritus (psychology) Paul MdConnell Ph.D. was made public in 2010 on the CBC web site.  The proposal for a Fredericton based autism residential treatment and care facility (near the UNB-CEL Autism staff and the Stan Cassidy Autism Centre also included autism specific group homes with autism trained staff and oversight from the Fredericton centre.

New Brunswick has been a Canadian and North American leader ( as recognized by the Association for Science in Autism Treatment) in establishing early intervention services. We have also made advances in autism trained education aides and resource teachers.  There is no reason in principle that we could not have extended the expertise we have developed to the adult care and treatment level as described by Professor McDonnell (CBC, 2010) and provided both a centre for those with severe autism needing permanent care, treatment and oversight and autism specific group homes in Miramichi and around the province to keep as many autistic people as possible close to home, family and community.

Cost has not been the primary obstacle in the refusal to develop an autism centre and network of autism specific group homes.  Costs of sending each person to Spurwink have been estimated at approximately $300,000 per year and would be saved with the development of the NB based adult care network.  Jobs would also be created in the center and group homes for the trained staff.

As a father of a now 19 year old severely autistic adult son I genuinely empathize with the Miramichi adult and his family and I can provide no reasonable explanation as a long time public autism advocate as  to why NB with its proven ability to develop a well recognized early autism intervention program, and its extension of that program to train our school teachers and aides can not organize a centre based network with autism specific group homes around the province.  Had that been done years ago the current situation in Miramichi would probably not have arisen.

Please take this letter seriously, as a call to action to develop the autism centre and group home network proposed by Professor Emeritus Paul McDonnell in 2010.

Please act to provide residential care and treatment for NB's severely challenged autistic adults before more time is needlessly wasted.

Respectfully,


Harold L Doherty
Fredericton North
New Brunswick

Sunday, May 18, 2014

Toronto Star: Toronto Councillor Doug Ford Believes Treatment Home for Kids with Autism "Ruined the Community"

Is Toronto City Councillor Doug Ford so contemptible as to verbally attack  children residing at a treatment centre  for children with autism?  



adjective \kən-ˈtem(p)-tə-bəl\  : not worthy of respect or approval : deserving contempt

"Contemptible." Merriam-Webster.com. Merriam-Webster, n.d. Web. 18 May 2014. 


The Toronto Star reports that Doug Ford, yup, Toronto Councillor Doug Ford, brother of the allegedly rehab dwelling Mayor Rob Ford, thinks that a treatment home for kids with autism ruined the community.  Doug Ford, constantly defending and enabling his brother, the Toronto mayor filmed with crack pipes in his hand, mouthing obscenities, hanging out with alleged gangsters and knocking over a female member of Toronto City Council, thinks a treatment home for kids with autism ruined his community. 

"The director of an Etobicoke home for teens with autism says she is disappointed that Councillor Doug Ford thinks the treatment program has “ruined the community.”

Speaking last week at a meeting between residents and staff from the Griffin Centre, Ford backed neighbours who are concerned about mental health treatment at a home in their midst, according to a report in the Etobicoke Guardian. “My heart goes out to kids with autism. But no one told me they’d be leaving the house,” Ford was quoted as saying. “If it comes down to it, I’ll buy the house myself and resell it.” Ford did not respond to requests for comment from the Star on Saturday."

Anyone following the Ford Brothers Comedy Hour knows that denials inevitably follow reports of disgusting, contemptible behaviour.  In all likelihood Doug Ford will do so  and attack the Toronto Star in the process. 

I am not a fan of the Ford Brothers  but I do actually hope that the Toronto Star is wrong this time. 

I hope that a city councillor of Canada's largest city is not so contemptible as to mouth such a disgusting verbal attack against autistic children.  

Saturday, February 09, 2013

Medicare's Orphans: Jean Lewis On The Struggle for Autism Treatment In Canada

The video and clip below are from the Medicare for Autism Now web site and feature MFAN co-founder Jean Lewis, one of Canada's foremost autism advocates, providing an articulate, personally informed summary of the struggle for autism treatment in Canada.  

Jean keeps the discussion on a non-partisan level and discusses the fight to end Canada's inhumane and  discriminatory exclusion of treatment for those with autism disorders in the context of other historic struggles for liberation from discrimination based on race and gender. A very important point to remember in Jean's message is that such struggles are never overnight affairs.  They are essentially political wars which involve many battles before the wars are won.  

For those of us who are parents it is difficult  but it is, and always will be, necessary to stay engaged in the battles, to continue the fight and to assist newcomers who need to join the political armies fighting for a humane, Canadian  government to fulfill the promise of Medicare of which Canadians are justifiably proud  and ensure coverage of evidence based treatment for autism disorders. 

Jean Lewis, co-founder of Medicare for Autism Now and Civil Rights Now and co-producer of Medicare’s Orphans discusses the purposes of the film — which are provide a detailed history of the autism treatment movement, and to help maintain momentum in the campaign for justice.

 

Friday, August 10, 2012

1 Year Limit On ABA Treatment for Autism Forces Mother to Leave Nova Scotia for Alberta


A Nova Scotia mother with an autistic son is planning to "go out to Alberta" where ABA autism treatment services are not, as in Nova Scotia, limited to one year.  Does Canada need Medicare for Autism NOW?  No question about it.  Nova Scotia, for those who don't know, is also the province which became notorious for distributing ABA services for autism on a lottery basis. 

I was born in Nova Scotia's Annapolis Valley and return  periodically to visit family. It is a beautiful province with some wonderful people but it's government has not made proper treatment of autistic children a significant priority.  Canada needs Medicare for Autism Now so that more families with autistic children are not forced to leave provinces like Nova Scotia or New Brunswick which is now, under the Alward government,  effectively dismantling many of its autism services.

Thursday, August 09, 2012

Barry Hudson: Ontario and Canada Are Failing Our Autistic Children and Adults

Barry Hudson is  a very well informed, articulate father of an autistic son in Ontario, autism advocate and director with Medicare for Autism Now! Barry describes his family life with autism and the impact of autism on family life.  He describes waiting lists and other obstacles that the Ontario bureaucracy uses to prevent children with autism from receiving autism services.  Children with autism who are not considered severe enough do not receive treatment. Children with autism who are considered too severe do not receive treatment.  A child with autism who clears these hurdles will have treatment services discontinued if they do not pass periodic improvement tests.  

Barry also provides an informed articulate history and criticism of Canada's failure to provide a national health care scheme to cover autistic children in Canada, a failure made more pronounced by the fact that some other countries have identified autism as national priorities and put programs in place to provide treatment.  


Monday, July 23, 2012

You Listen Mister: Best Autism Advice This Autism Parent Ever Received

Following is a re-posting of an earlier comment: Irrational Neurodiversity Ideology Harms Children with Autism Disorders. As the title indicates it is my personal opinion, not as a lawyer, which I am, not as a medical professional which I am not. It is my view as an autism parent, of an ideology that I feel is harmful to many children with autism disorders, particularly those most severely affected by their autism. For these children solid research and medical opinion has told us for several decades now that early Applied Behavior Analysis is an effective treatment for autistic children. Yet there is an ideology promoted in the mainstream media, and even by US government appointments to the IACC, which reflect the misconception that anti-cure high functioning autistic persons can speak on behalf of severely autistic children, other people's children. In the most extreme cases the Neurodiversity ideologues even discourage parents of newly diagnosed autistic children from seeking early ABA intervention for their children. When parents exposed to this irrational ideology turn away from early intervention they may be harming their autistic children.

I was fortunate, and my son Conor was fortunate, that not too long after his autism diagnosis I attended an autism parent meeting where I met a registered nurse named Dawn Bowie. Dawn's autistic son was a couple of years older than Conor. When I began expressing some of my doubts about early intervention, doubts inspired by reading Neurodiversity literature, Dawn Bowie responded as perhaps only a nurse can do. She looked me right in the eye and in a very firm tone said "You listen mister you get treatment for your son, if you can, as much as you can".

There weren't many autism treatment resources available in Fredericton 14 years ago when my son was diagnosed at the age of two. But I sought out the treatment that Dawn recommended and I became an advocate for autism services in New Brunswick along with Dawn Bowie and many other autism parents. As the parent of a now 16 year old son I don't know if he could have attended school all these years, or if he would still be living with us, if he had not received the ABA he has received and if we had not learned how to manage his behavior through our own efforts to apply ABA principles at home. 

Early effective ABA intervention for your autistic child. It's the best advice I received for my autistic son. Absolutely check with your child's treating professionals but I suspect you will receive the same advice ... get as much early ABA treatment for your autistic child as you can. It was the best autism advice this father of a severely autistic son ever received. 

My previous commentary on the irrationality of, and harm caused by, Neurodiversity follows. It includes references to an American Medical Association commentay in which Dr. Magaret Moon questions the ethics of parents refusing available effective ABA treatment for their autistic children, parents who have imbibed the anti-cure rhetoric.  My comment also includes an earlier reference to Dawn's advice ... the best autism advice I ever received. 

 Irrational Neurodiversity Ideology Harms Children with Autism Disorders 

The American Medical Association has a commentary titled Can Parents of a Child with Autism Refuse Treatment for Him? by Dr. Margaret Moon on its Virtual Mentor AMA Journal of Ethics site, in which Dr. Moon discusses a clinical case where parents of a 6 year old boy was being treated for an earache confirmed to the attending physician that the behavior he displayed during the visit reflect his autism diagnosis two years earlier. The doctor advised the parents of an opportunity for treatment for the autism disorder but the parents refused. because his son's condition was an example of neurodiversity and was not pathologic. Dr. Moon discusses the ethical implications of the parents refusal to provide available treatment for their son's autism disorder including the question whether child protection agencies should be contacted by a doctor confronted with such a situation: 


"When Dr. Pittman questioned Dayton’s parents about his behavior, they told her he had been diagnosed with autism at age 4. His development, they said, was delayed. 

She asked what treatment Dayton’s parents had sought for him, and the answer shocked her. They were members of the autism self-advocacy movement and believed that Dayton’s condition was simply an example of neurodiversity and was not pathologic. They clearly adored their son, doting on him during the clinic visit and telling Dr. Pittman how they home-schooled him after the public school system failed to meet his social and educational needs. They accepted Dayton as he was and were determined to provide him with lifetime care. 

 Dr. Pittman viewed Dayton’s situation differently. She knew that with proper therapy and medication his condition could improve considerably—but only if treatment were begun as soon as possible. She worked at a nearby autism clinic, where Dayton could probably qualify for long-term treatment. When she mentioned this to Dayton’s parents, they wanted nothing to do with it. They were adamant in their belief that Dayton’s condition required no medical intervention. 


Dr. Pittman had encountered many adult patients with culture-based opinions about their health problems that she found hard to understand, but this was the first time she’d disagreed so fundamentally with parents about a situation that she believed would harm their child by limiting his future opportunities. She fought the urge to reprimand them for what she considered their neglect of his debilitating developmental problem. Did their treatment constitute child endangerment, she wondered? Would she be justified in contacting a child protection agency? 


 Parents and doctors will have to wrestle with the ethical implications of a parent refusing treatment for a child's autism disorder. Personally I don't really see an issue. A parent has no more right to refuse available treatment for their child's autism disorder then they would to refuse treatment for their child's broken foot. To suggest otherwise is simply to express the belief that mental health disorders are not as important as physical health issues. That is in itself a form of discrimination against those with mental health disorders. 

 The parents in that clinical case commentary are responsible for what happens to their child and they must wear the blame for their refusal of available autism treatment for their child, treatment that could help their child live a better, fuller life. The parents refused treatment even though it was available and assistance was offered by the doctor. 


Blame also rests squarely on the shoulders of those who have promoted the Neurodiversity ideology from Jim Sinclair to Ari Ne'eman and the large media institutions like the CBC, CNN, and New York Magazine for promoting the Neurodiversity ideology which harms children with autism. As applied to autism Neurodiversity is fundamentally irrational at its core. 


 Neurodiversity is irrational in that it accepts that a person can receive a medical diagnosis called autism, embrace the diagostic label "autism", identify with "autism", and in the same breath reject autism as being a medical condition. Neurodiversity is pushed by some very high functioning people who have been diagnosed with mental disorders listed in the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders. ND ideologues embrace the label of "autism" and yet reject the idea that autism is ... a medical disorder ... a mental disorder. 


When my son Conor was first diagnosed I read some of the ND literature, particularly commentary by Jim Sinclair. I was unsure whether to seek treatment for my son Conor or not. I attended a parents support group meeting where the topic was raised and I expressed my reluctance to seek treatment for my son Conor. I was fortunate because at that meeting was a registered nurse with a child with an autism disorder named Dawn Bowie. Dawn looked me square in the eye, pointed a finger at me and said "you listen mister, you get treatment for your son, if you can, as much as you can". 


I am a lawyer, a big guy who has seen a few things and I am not afraid of confrontation. Few people in my life have talked to me as Dawn Bowie did at that meeting about getting treatment for my son. She got my attention and I listened. Conor is much better off because Dawn had the guts to tell me, very emphatically, to snap out of it and do what had to be done to help him, to get treatment. The parents in the clinical case commented on by Dr. Moon did not apparently have a Dawn Bowie to read them the riot act. Many will also be exposed to Neurodiversity ideology, not just through internet bloggers but also through major media institutions that add a false air of legitimacy to this harmful ideology pushed by frequent big media interviews with very high functioning autistic persons who do not want to be cured. 


Even the administration of US President Barack Obama has legitimized this harmful ideology by promoting a very high functioning young man with Aspergers named Ari Ne'eman to sit on influential health and autism committees. Mr. Ne'eman has told the world that "WE", meaning all children and adults with autism do not want to be cured. He promotes the idea that autism and Aspergers are social conditions not medical conditions. 


Neurodiversity harms children with autism by promoting the view that autism should not be treated and influencing the decisions of parents such as those in the case commentary to refuse available autism treatment for their son. It is sad to think of the development opportunity lost by the boy with autism in the case study commentary by Dr. Moon. 

It is time for organizations from the CBC, CNN, New York Magazine to the Obama administration to stop romanticizing autism and to stop promoting the anti-cure nonsense of the harmful and irrational Neurodiversity ideology. Autism disorders are exactly that medical disorders, mental disorders. If treatment is is available parents of autistic children should seek effective, evidence based treatment from credible service providers for their children. If it is not readily available they should consider doing what was done in many states and provinces, including New Brunswick, they should advocate and fight for government sponsored autism treatment for their children. 


Do not subscribe to the Neurodiversity ideology. Your child with an autism disorder will pay the price if you do.

Saturday, November 05, 2011

New York State Now Requires Insurers to Cover Treatment for Autism Disorders


While this Canadian autism father is annoyed by media attention given to Canadian researcher  Laurent Mottron's perpetual crusade to recreate autism disorders in the image of his mentor Michelle Dawson, and trivialize the plight of the 70% of persons with Autistic Disorder and intellectual disabilities, there is good news south of the border to brighten the day.  In New York state BuffaloNews.com reports that our sensible American neighbors have passed legislation requiring insurers in that state to cover treatment for autism disorders:

A measure requiring health insurers to cover autism disorders was signed into law Tuesday, making New York the 29th state to enact such coverage mandates for the complex neurobiological disorder ... The legislation, signed into law by Gov. Andrew M. Cuomo, was approved unanimously by both legislative houses in June.


Dr. Mottron must surely be disappointed that US states are moving to provide insurance coverage for autism treatments that he and his mentor Michelle Dawson opposed at the Supreme Court of Canada in the Auton case where she intervened as an "autistic" in an effort to prevent the British Columbia government from being required to fund ABA treatment for autistic children.  (Dawson's request for intervenor status was backed by Dr. Motton's affidavit in support).


The American Academy of Pediatrics and experts are referenced in the BuffaloNews article supporting early treatment for autism:


"The American Academy of Pediatrics says that there is no cure for autism-related disorders but that children, with treatment, can progress and learn new skills. Experts say early diagnosis is key to helping improve conditions for children afflicted with autism. "


The AAP has previously given clear guidance on effective treatments for autism:



The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4

American Academy of Pediatrics,Management of Children with Autism Spectrum Disorders


The AAP 2007 report  Management of Children with Autism Spectrum Disorders was reaffirmed  by the AAP in September 2010:



REAFFIRMED

Clinical Report: Dealing With the Parent Whose Judgment Is Impaired by
Alcohol or Drugs: Legal and Ethical Considerations. Pediatrics. 2004;
114(3):869 – 873. Reaffirmed September 2010

Clinical Report: Identification and Evaluation of Children With Autism
Spectrum Disorders. Pediatrics. 2007;120(5):1183–1215. Reaffirmed
September 2010

Clinical Report: Management of Children With Autism Spectrum Disorders. Pediatrics. 2007:120(5):1162–1182. Reaffirmed September 2010

Unfortunately in Canada the views of Dr. Laurent Mottron and his mentor Michelle Dawson concerning ABA treatment of autism disorders hold great sway with the government of Prime Minister Harper which invited them to the national autism symposiums from which Canadian ABA advocates were banned despite having fought for a national autism strategy which led to the symposiums. 

In Canada the fight for ABA coverage for autism disorders continues though and determined parents and professionals will not give up. Although the mainstream media loves the feel good picture of autism created by Neurodiversity ideologues like Mottron and Dawson a history of the struggle for treatment for our autistic children can be found online at Medicare's Orphans

Thursday, October 27, 2011

Autism and ABA Translated: Jacobson, Mulick and Green 1998

The fight to ensure that children with autism disorders receive treatment for their disorders engages many different people with many different priorities.  Autism advocates do meet political leaders and civil services officials who genuinely care.  But we also encounter those whose only concern is the bottom line, the mighty dollar.  To persuade these people that autistic children deserve treatment for their autism disorders you have to speak their language.  That is exactly what Jacobson, Mulick and Green did in 1998 with their paper Cost-Benefit Estimates For Early Intensive Behavioral Intervention For Young Children With Autism-General Model And Single State Case, Behavioral Interventions, Behav. Intervent., 13, 201-226 (1998)(headnote):

"Clinical research and public policy reviews that have emerged in the past several years now make it possible to estimate the cost-bene®ts of early intervention for infants, toddlers, and preschoolers with autism or pervasive development disorder-not otherwise specified (PDD-NOS). Research indicates that with early, intensive intervention based on the principles of applied behavior analysis, substantial numbers of children with autism or PDD-NOS can attain intellectual,academic, communication, social, and daily living skills within the normal range. Representative costs from Pennsylvania, including costs for educational and adult developmental disability services, are applied in a cost-benefit model, assuming average participation in early intensive behavioral intervention (EIBI) for three years between the age of 2 years and school entry. The model applied assumes a range of EIBI e€ects, with some children ultimately participating in regular education without supports, some in special education, and some in intensive special education. At varying rates of effectiveness and in constant dollars, this model estimates that cost savings range from $187,000 to $203,000 per child for ages 3-22 years, and from $656,000 to $1,082,000 per child for ages 3-55 years. Differences in initial costs of $33,000 and $50,000 per year for EIBI have a modest impact on cost-benefit balance, but are greatly outweighed by estimated savings. The analysis indicates that significant cost-aversion or cost-avoidance may be possible with EIBI."

Monday, October 17, 2011

Determined Autism Advocates Jean Lewis & David Marley Fight for Medicare Coverage for Autism Disorders



David Marley and Jean Lewis of Medicare for Autism Now!
Oakville, Ontario, 2008

David Marley and Jean Lewis of Medicare for Autism NOW! have been fighting for medicare coverage of evidence based treatment for autism disorders for many years.  I first met them in Halifax in May, 2007 and again in Oakville and Toronto in April, 2008.  Last year I had the privilege of seeing them again in Toronto while they were working on the film Medicare’s Orphans: Canadians Unworthy of Treatment  which is expected to set out the case for medicare coverage of autism treatment in Canada. The video below features Jean and David interviewed by radio host Bill Good.  It is the last trailer for the Medicare's Orphans film expected to be released this fall.




Monday, October 03, 2011

LA Times Gets It Right: ABA Is An Autism Treatment Worth Funding

I am a frequent critic of the mainstream media's tendency to misrepresent autism disorders. The mainstream media routinely presents feel good stories of autistic accomplishments, painting autism as merely a different way of thinking and speculating that many of histories great geniuses were probably autistic.  Discussion of autism treatments ranges from riding horses in Mongolia to swimming with dolphins.  More serious mainstream media treatments of autism treatments will acknowledge that early intervention is important for successful outcomes without mentioning ABA, applied behavior analysis, the most solidly evidence backed treatment shown for many years to result in a number of intellectual, language and behavior gains in autistic children who receive early intensive ABA intervention.

I have criticized all aspects of mainstream media misrepresentation of autism including the tendency to hide the evidence based effectiveness of ABA known for many years and confirmed by authorities from the US Surgeon General to the American Academy of Pediatrics.  It is only right that I acknowledge, with gratitude, when a mainstream media institution gets it right as the LA Times has done with its clear, straight to the point,  statement about the importance of ABA as a treatment for autism disorders:

"An autism treatment worth funding


Editorial


A California bill would require insurance companies to cover the cost of applied behavioral analysis for the autistic. It's good policy.


September 30, 2011


State law requires insurers to include coverage for autism in comprehensive healthcare policies. Now, lawmakers want to go a step further, requiring coverage of a particular autism treatment: applied behavioral analysis. Insurers are resisting. They don't question the effectiveness of the therapy; they just say it doesn't fit the definition of "medical" treatment. Their position reflects how crucial parts of the healthcare system are wedded to the status quo, regardless of what's best for patients. State lawmakers have passed a bill to overcome the insurers' resistance, and Gov. Jerry Brown should sign it."

Thursday, September 01, 2011

Autism Pundit's Sound Advice for Autism Speaks


Autism Pundit is the new autism blog by Dr. Sabrina Freeman, a mother of an autistic daughter, who has been a powerful advocate for evidence based treatment for children with autism, and whose "about the blogger"  section states in more detail:

"Sabrina Freeman, Ph.D. (1958-) was born in Montreal, Quebec, and grew up in Vancouver, British Columbia. She graduated from Stanford University in 1995 with a Ph.D. in Sociology, specializing in small group research and the study of organizations. Upon her return to British Columbia, Freeman spent 14 years advocating for the rights of children with autism to be included in the government funded health care system for their core health need -- autism treatment. During this period, so many parents were desperate to access treatment programs that Freeman created a 35 minute VHS/DVD [Autism: Now What Do I Do?] to help guide parents through setting up science-based treatment programs for their children. In 2002, she was awarded Queen Elizabeth's 50th Golden Jubilee Medal for advocacy work done on behalf of children afflicted with autism. Freeman's advocacy culminated in the now famous Supreme Court of Canada ruling Auton (Guardian ad litem of) v. British Columbia in 2004.

During the last 15 years, Freeman wrote several books on autism, one of which [Teach Me Language] has been subsequently translated into French, Italian and Norwegian. The next book she wrote, [Science for Sale in the Autism Wars], chronicles the struggle children with autism face against a system that does not recognize their rights to treatment. Her most recent book [The Complete Guide to Autism Treatments (2011)] is an up-to-date evaluation on the various treatments offered for children with autism. Her hope is that through her scholarship, thousands of parents will not have to go through the uncertain journey of generations of parents of newly diagnosed children. Instead, she offers parents a way to quickly evaluate various treatments and make sure that their child receives science-based treatment rather than treatments based on testimonials and good wishes."

Dr. Freeman's blog promises to rapidly become one of the best autism blogs on the internet.  Her writing style is direct and does not cater to political correctness. A good example is a comment posted yesterday called "We're Aware Already!" in which she offers sound advice to Autism Speaks on two important points. 1. The need to educate ... sorry .... encourage ... many pediatricians to drop their opposition to routine early screening for autism. 2. Start publicizing the fact that ABA has been recognized as best autism practices since 1999 by the US Office of the Surgeon General and other key agencies:

"It is time for the Autism Speaks folk to publicize the fact that:
a) The U.S. Surgeon General has recognized Intensive Behavioral Treatment as best practices for autism treatment since 1999 (that was twelve years ago)!
b) New York State has also recognized Intensive Behavioral Treatment as 
best practices since 1999(that was twelve years ago)!
c) Over 50% of
 
states in the U.S.
 have passed autism mandates forcing insurance companies to pay for treatment!

Once the mover’s and shakers i.e. the well funded charities, in the autism community recognize the above facts, only then will we be able to move beyond awareness into early intensive behavioral treatment for all the children who desperately need it!
What are we waiting for?"

I have already listed Autism Pundit on my sidebar as one of my favorite blogs to visit. If you are interested in helpful autism commentary I recommend Autism Pundit a blog which is serious about helping autistic children and adults written by someone who is extremely well informed, experienced in real autism advocacy, and who is a top notch writer. I encourage you to take a look at Autism Pundit and make it one of your regular blogs to visit.

Saturday, November 27, 2010

Science in Autism Treatment Newsletter


The following E-blast, which I am happy to post here at Facing Autism in New Brunswick,  is from Josh Pritchard of the Association for Science in Autism Treatment:

Hello All!

We have all witnessed consumers enticed and distracted by the myriad of alternative treatments that have been put forth. Often, these treatments run counter to effective approaches and may deplete precious resources.  We believe that ASAT’s free e-newsletter may help. Newsletter recipients will stay informed of up-to-date science-based treatments, read about ASAT’s response to inaccuracies about autism treatment in the media, and learn how science can be used to inform decision making. 

If you’re at your computer and have a few moments, now might be a perfect time to sign up for the Association for Science in Autism Treatment’s free quarterly newsletter, Science in Autism Treatment.  You can sign up here: www.asatonline.org/signup

We have a new issue coming out soon – signup so that you’ll receive it first!
Our goal was to get our newsletter out to 6000 subscribers by the end of 2010.  We’re quickly reaching the end of 2010 – and only need a few more subscribers! Will you help us reach it?

If you’re unfamiliar with SIAT, it is a newsletter packed with information (20-30 pages per issue) that include things such as:

·       Is there science in that? [we take treatments proposed for autism and examine the scientific literature supporting it]

·      Consumer Corner [we feature a resource of interest to consumers]
·        
T Treatment  Summary [we choose a treatment proposed for autism and provide a very brief summary]

·       Clinical Corner [we have a clinician answer a specific question related to autism treatment]

·       Interview with those in the field [we interview a ASAT board members/volunteers, parents, and scientists in the field]  

·       Article reviews [generally 3 article reviews that provide a quick and easy review of articles germane to scientific treatment in autism]
·        
Upcoming Events that may be of interest to the reader

·       Book Reviews…
…and much more

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Saturday, November 13, 2010

Irrational Neurodiversity Ideology Harms Children with Autism Disorders

The American Medical Association has a commentary titled  Can Parents of a Child with Autism Refuse Treatment for Him?  by Dr. Margaret Moon on its Virtual Mentor AMA Journal of Ethics site,  in which Dr. Moon discusses a clinical case where parents of a 6 year old boy was being treated for an earache confirmed to the attending physician that the behavior he displayed during the visit reflect his autism diagnosis two years earlier.  The doctor advised the parents of an opportunity for treatment  for the autism disorder but the parents refused. because his son's condition was an example of neurodiversity and was not pathologic.  Dr. Moon discusses the ethical implications of the parents refusal to provide available treatment for their son's autism disorder including the question whether  child protection agencies should be contacted by a doctor confronted with such a situation:

"When Dr. Pittman questioned Dayton’s parents about his behavior, they told her he had been diagnosed with autism at age 4. His development, they said, was delayed.

She asked what treatment Dayton’s parents had sought for him, and the answer shocked her. They were members of the autism self-advocacy movement and believed that Dayton’s condition was simply an example of neurodiversity and was not pathologic. They clearly adored their son, doting on him during the clinic visit and telling Dr. Pittman how they home-schooled him after the public school system failed to meet his social and educational needs. They accepted Dayton as he was and were determined to provide him with lifetime care.

Dr. Pittman viewed Dayton’s situation differently. She knew that with proper therapy and medication his condition could improve considerably—but only if treatment were begun as soon as possible. She worked at a nearby autism clinic, where Dayton could probably qualify for long-term treatment. When she mentioned this to Dayton’s parents, they wanted nothing to do with it. They were adamant in their belief that Dayton’s condition required no medical intervention.

Dr. Pittman had encountered many adult patients with culture-based opinions about their health problems that she found hard to understand, but this was the first time she’d disagreed so fundamentally with parents about a situation that she believed would harm their child by limiting his future opportunities. She fought the urge to reprimand them for what she considered their neglect of his debilitating developmental problem. Did their treatment constitute child endangerment, she wondered? Would she be justified in contacting a child protection agency?

Parents and doctors will have to wrestle with the ethical implications of a parent refusing treatment for a child's autism disorder. Personally I don't really see an issue.  A parent has no more right to refuse  available treatment for their child's autism disorder then they would to refuse treatment for their child's broken foot. To suggest otherwise is simply to express the belief that mental health disorders are not as important as physical health issues. That is in itself a form of discrimination against those with mental health disorders.

The parents in that clinical case commentary are responsible for what happens to their child and  they must  wear the blame for their refusal of available autism treatment for their child, treatment that could help their child live a better, fuller life. The parents refused treatment even though it was available and assistance was offered by the doctor.

Blame also rests squarely on the shoulders of those who have promoted the Neurodiversity ideology from Jim Sinclair to Ari Ne'eman and  the large media institutions like the CBC, CNN, and New York Magazine for promoting the Neurodiversity ideology which harms children with autism.  As applied to autism Neurodiversity is fundamentally irrational at its core.

Neurodiversity is irrational in that it accepts that a person can receive a medical diagnosis  called autism, embrace the  diagostic  label  "autism",  identify with "autism", and in the same breath    reject autism  as being a medical condition. Neurodiversity is pushed by some very high functioning people who have been diagnosed with  mental disorders listed in the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders. ND ideologues embrace the label of "autism" and yet reject the idea that autism is ... a medical disorder ... a mental  disorder. 

When my son Conor was first diagnosed I read some of the ND literature, particularly commentary by Jim Sinclair.   I was unsure whether to seek treatment for my son Conor or not.  I attended a parents support group meeting where the topic was raised and I expressed my reluctance to seek treatment for my son Conor. I was fortunate because at that meeting was a registered nurse with a child with an autism disorder named Dawn Bowie.  Dawn looked me square in the eye, pointed a finger at me and said "you listen mister, you get treatment for your son, if you can, as much as you can".

I am a lawyer, a big guy who has seen a few things and I am not afraid of confrontation.   Few people in my life have talked to me as Dawn Bowie did at that meeting about getting treatment for my son.   She got my attention and I listened. Conor is much better off because Dawn had the guts to tell me, very emphatically, to snap out of it and do what had to be done to help him, to get treatment.
  
The parents in the clinical case commented on by Dr. Moon did not apparently have a Dawn Bowie to read them the riot act.  Many will also be exposed to Neurodiversity ideology, not just through internet bloggers  but also through major media institutions that add a false air of legitimacy to this harmful ideology  pushed  by frequent big media interviews with very high functioning autistic persons who do not want to be cured.

Even the administration of US President Barack Obama has legitimized this harmful ideology by  promoting  a very high functioning young man with Aspergers named Ari Ne'eman to sit on influential health and autism committees. Mr. Ne'eman has told the world that "WE", meaning all children and adults with autism do not want to be cured.  He promotes the idea that autism and Aspergers are social conditions not medical conditions.

Neurodiversity harms children with autism by promoting the view that autism should not be treated and influencing the decisions of parents such as those in the case commentary to refuse available autism treatment for their son. It is sad to think of the development opportunity lost by the boy with autism in the case study commentary by Dr. Moon. It is time for organizations from the CBC, CNN, New York Magazine to the Obama administration to stop romanticizing autism and to stop promoting the anti-cure nonsense of the harmful and irrational Neurodiversity ideology. 

Autism disorders are exactly that medical disorders, mental disorders.  If treatment is is available parents of autistic children should seek effective, evidence based treatment from credible service providers for their children.  If it is not readily available they should consider doing what was done in many states and provinces, including New Brunswick, they should advocate and fight for government sponsored autism treatment for their children.

Do not subscribe to the Neurodiversity ideology.  Your child with an autism disorder will pay the price if you do.

CARD Study Is Latest Proving ABA Is the Gold Standard for Autism Treatment



Dr. Doreen Granpeesheh, executive director and founder of CARD, celebrates 
the study results  with Megan Howell, one of the participants who recovered

Study results released by the Center for Autism and Related Disorders prove, once again, that ABA is the gold standard for autism treatment.   CARD, one of the best known, experienced and credible centers for autism intervention in the world states in its press release that the study:

"evaluated the effects of behavioral intervention for 14 young children with autism using a version of Applied Behavior Analysis (ABA) that blends structured teaching with play-based behavioral intervention. Today, 43 percent of the study's participants no longer display clinical symptoms of autism and most of the participants demonstrate significant improvements in functioning. 

In accordance with previous research, CARD found that many of the children made substantial gains in cognitive and adaptive functioning, as well as language skills. Most of the children also demonstrated significant improvements in executive functioning. After treatment, the average T-score for the group on the BRIEF, a measure of overall executive functioning, was 61, well below the cut-off for clinically significant impairment. In addition, 8 out of 14 children were functioning in the average range on the Vineland ABC, a measure of overall adaptive functioning, whereas only 2 of 14 were in the average range before treatment began.

CARD officials are not trying to overstate the results. They do not claim that the children are cured nor that they all can be said to be "indistinguishable from their peers":

Daniel Openden, the center's vice president and clinical services director, said the CARD results are the latest to prove ABA-based therapy is the gold standard for autism treatment. He sees autistic children make amazing progress, but he doesn't say they are cured or recovered.

"Recovery can mean different things to different people, so the key is to understand how recovery is defined," he said. "We see a range of outcomes in response to effective treatment, up to and including children who appear indistinguishable from their peers. But we're not comfortable saying that these children no longer have autism."

This study will have no persuasive effect on those who are ideologically opposed to ABA but for parents and others seeking help for their autistic children it is more evidence that they should give strong consideration to ABA as a treatment to help their children.

Monday, November 01, 2010

Autism is a Mental Disorder for Which Cures Should be Sought

About DSM-5 

Diagnostic and Statistical Manual of Mental Disorders (DSM) is the standard classification of mental disorders used by mental health professionals in the United States and contains a listing of diagnostic criteria for every psychiatric disorder recognized by the U.S. healthcare system.


Autism is, by definition, a mental disorder. Autism is, by definition a psychiatric disorder. 

These autism realities are often ignored in the attempt by some persons to claim that they speak on behalf of persons with autism.  These same persons, purporting to speak on behalf of all persons with autism disorders, claim that "THEY" do not want to be cured.
 
The politicking involved in maintaining the impossible position of speaking for all persons with a mental disorder is challenging even with the backing of the New York(er) magazine and the IACC. Flip flopping is  frequent with discussion focusing on autism as a socially imposed disability rather than a mental or psychiatric disorder. The same "autism spokespersons" who purport to speak on behalf of people with mental disorder diagnoses avoid like the plague any mention of autism as ...... a mental disorder.  Although they embrace the autism label, a diagnostic category in the DSM they make no mention of what it actually is ... a mental disorder.  

A social disability, a way of life, a culture, a different way of thinking, a different part of a neurodiverse existence. All of these things for sure but not a mental disorder.  And they want me to reject what I know about my son's Autistic Disorder, his mental disorder, based on 14 years of living with him, caring for him, loving him .....  in favor of the views of some adult diagnosed persons views who do not know my son and  who do not acknowledge the reality of their own diagnoses?

Today is a day on which some in the online autism world are shutting down social communication in an attempt to draw attention to communication deficits suffered by persons with autism. It is an interesting idea and I hope it creates some buzz even though I am not participating. 

I have long ago chosen to speak out about autism disorders and on this day I choose to go back to basics and point out a basic that is becoming more and more obscured ... autism is a mental disorder.  It is a mental disorder which imposes severe life restrictions on many who suffer from it and can not drive Land Rovers, operate successful businesses, play in rock bands, attend colleges for gifted youth or work as researchers with prominent high functioning autism experts. 

Autism is a mental disorder for which we must not stop trying to find treatments and cures to improve the lives of those who suffer from the disorder. 

Sunday, July 11, 2010

Autism Disorders and Family: Conor Has Always Loved Life and Basked in the Love of Family

Conor has always loved and enjoyed life to the full. He has also basked in the love and affection of family. In the pictures of Conor's early years that follow he is seen with his Mom, Dad, Brother Brandon and Grammy Doherty.  We have accepted, embraced and loved Conor, autism and all, but we have not embraced his Autistic Disorder because to do so would be to abandon the boy that we love so much.  We fought for ABA and accommodated education services for him to help improve his situation in life which, as for most, will grow more difficult with time, particularly when time, age and the inevitable fate of all humans takes his family from him.   We fight for real autism research aimed at finding treatments and cures that will benefit Conor and other persons with autism disorders who need and want treatment.  

I challenge anyone, Neurodiversity ideologue or otherwise,  to say that the boy in these pictures is not accepted and loved by his family.  Don't do it anonymously or under an internet stage name though.  Put your full real  name on your comment and tell me this boy is not living life and being loved to the full.

Conor has Autistic Disorder and Intellectual Disabilities. He has a very restricted life ahead of him once Mom and Dad are gone. Those are realities we as caring, clear headed parents can not ignore. Because of that we fight hard for accommodation, research, treatment and ... cure for Autistic Disorder to benefit  the wonderful gift that we have enjoyed for so many years ... to benefit Conor.