A Positive Adult Autism Meeting with Social Development Minister Cathy Rogers

Minister of Social Development Cathy Rogers

Photo Source: NB Liberal Site 

July 14, 2015 Meeting with Social Development Minister Cathy Rogers
at 551 King Street, Photo by Harold L Doherty

On July 14, together with autism advocate Cynthia Bartlett and Clinical Psychologist and Professor Emeritus (Psychology) Paul McDonnell I met with Social Development Minister Cathy Rogers and 3 of her advisers.  The meeting had been requested by Minister Rogers when it became clear in the Legislature gallery that I, and presumably some others in the gallery, were unhappy with the government’s response to opposition MLA Ernie Steeves motion on adult autism care.  Bathurst MLA Brian Kenny, with whom I had spoken during our small demonstration outside the Legislature earlier that day was talking to Minister Rogers and pointing up at me.  A short time later Mr. Kenny came up to the visitors’ gallery and asked me to come out to the hall where Minister Rogers asked me if we could schedule a meeting to which I agreed.  I was thankful for the opportunity to address the adult autism care issues which have never been addressed in any coherent, systematic and well informed manner.  I was very pleased that Cynthia and Paul were available to attend at the meeting and share their experience and expertise.

The principle around which our discussion took place was the same principle on which those of us who advocated as parents for early autism intervention in NB  relied on in our successful advocacy efforts – the need for an evidence based approach. Fortunately the Minister and her advisers seemed to be in agreement with this principle at outset and needed no convincing.  That may not sound like much today but it was not always an easy sell in our early advocacy efforts in a province where clichés about community and inclusion are often sold as solutions to the most challenging disorders and deficits.

The evidence with respect to adult autism care in NB is clear: we do not have a plan to address in a humane, professional, reliant manner the needs of autistic adults, particularly those at the severe end of the spectrum, in New Brunswick.  We have housed New Brunswick ‘s autistic adults in a variety of hospital settings from general hospital wards to the Restigouche  Regional Psychiatric Hospital in Campbellton far from the bulk of NB’s population, far from most families.  We have housed a NB autistic youth on the grounds of the Miramichi Correctional Facility only because no other location had the resources to provide proper care and safety.  That youth and at least one young man were sent to the Spurwink facility in Maine for several years at a cost to the Province of approximately $300,000 per year per person.

What we discussed was the proposal developed largely by Paul McDonnel with input from parent advocates including Dawn Bowie, Lila Barry, Cynthia Bartlett and me and enunciated in principle in his 2010 CBC internet interview and analysis:

September 2010, CBC, N.B. can be a leader in autism services (Analysis, Paul McDonnell)

"Our greatest need at present is to develop services for adolescents and adults.

What is needed is a range of residential and non-residential services and these services need to be staffed with behaviorally trained supervisors and therapists.Some jurisdictions in the United States have outstanding facilities that are in part funded by the state and provide a range of opportunities for supervised and independent living for individuals with various disabilities. The costs of not providing such services can be high financially and in terms of human costs. As a psychologist in private practice I know there are large numbers of older individuals who are diagnosed later in life with Asperger's Syndrome that have no access to professional services of any kind.

In the past we have had the sad spectacle of individuals with autism being sent off to institutional settings such as the Campbellton psychiatric hospital, hospital wards, prisons, and even out of the country at enormous expense and without any gains to the individual, the family, or the community.

We can do much, much better.

We need an enhanced group home system throughout the province in which homes would be linked directly to a major centre that could provide ongoing training, leadership and supervision. That major centre could also provide services for those who are mildly affected as well as permanent resident care and treatment for the most severely affected. Such a secure centre would not be based on a traditional "hospital" model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development. The focus must be on education, positive living experiences, and individualized curricula. The key to success is properly trained professionals and staff."

There was also discussion of some of the serious issues that often accompany autism including intellectual disability, seizures, self injury, wandering and the need for surveillance of some autistic adults to ensure their safety.

The Minister did not make any clear commitments, at least as far as I understood our discussion.  She did say that other departments would have to included in the discussion, a point on which we agreed.

My assessment is that the meeting was positive and that the Minister sees autism care as a need that really has to be addressed in New Brunswick.

It is up to parents though, as it always has been, to keep these needs in the forefront if we want decent places for our children to live as adult; places where they can live  happy lives, according to their level of need,  with proper health care, education and security.

Adult Autism Center Information Protest At The Legislature May 28 at 1:30

Autism Advocacy NB Event:  Adult Autism Center Information Protest

Where: NB Legislature Grounds, Fredericton

When: Thursday, May 28 at 1:30

Who: Anyone who wishes to advocate for an adult autism center as the first step in building a comprehensive adult autism care and treatment network with locations in communities around the Province of New Brunswick.

Suggestions: Bring a sign stating "Adult Autism Center Badly Needed" or some variation according to your own preference.

Demeanor: Polite, Courteous with a view to informing NB MLAs of the need for a NB autism center to provide treatment and residential care to NB autistic adults in need as described by Paul McDonnell way back in 2010:

""Our greatest need at present is to develop services for adolescents and adults," McDonnell writes.

"What is needed is a range of residential and non-residential services and these services need to be staffed with behaviourally trained supervisors and therapists."

...

"In the past we have had the sad spectacle of individuals with autism being sent off to institutional settings such as the Campbellton psychiatric hospital, hospital wards, prisons, and even out of the country at enormous expense and without any gains to the individual, the family or the community

Among the reforms that the UNB professor is calling for is an enhanced group home system where homes would be connected to a major centre that would develop ongoing training and leadership.

The larger centre could also offer services for people who have mild conditions. But, he said, it could also be used to offer permanent residential care for individuals with more severe diagnoses.

"Such a secure centre would not be based on a traditional 'hospital' model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development," he writes.

"The focus must be on education, positive living experiences and individualized curricula. The key to success is properly trained professionals and staff."

New Brunswick's Band Aid Adult Autism Disorder Care and Treatment

New Brunswick has an approach to adult autism disorder care and treatment that can most charitably be described as a Band Aid approach.   There are many reasons for this Band Aid solution apart from the consistent waving of the "we are living in hard times" dismissal that usually accompanies the replies written for Ministers of Social Development  by their communications employees. The reality, regardless of the reasons, is that adult autism care in New Brunswick typically involves one emergency solution after another.  These emergencies have existed since before I became involved in autism advocacy after my 19 year old son's autism diagnosis 17 years ago. In the 17 years since I have seen one adult autism care emergency after another and those are only the ones which have been detected and reported by the Brunswick News reporters over the years.  New Brunswick, under pressure from determined autism parent advocacy and with the direct involvement  of the University of New Brunswick and its UNB-CEL program, developed a model for early intervention which has become recognized internationally.  We have also provided autism training for Teacher/Education Aides and Teachers although much remains to be done.  It was also autism parent outrage and advocacy that revived the tertiary level pediatric autism treatment service at the Stan Cassidy Centre that had been scheduled  for closure.

With all the progress we made in early intervention, education and pediatric autism care (to age 15 according to the Stan Cassidy Centrre web site) little has been done to implement a systemic solution to the residential care and treatment needs of autistic adults in New Brunswick.  Group homes with untrained staff and ad hoc accommodation for those who can function in those environments helps some but many require substantially higher levels of care ... tertiary level care such as that which exists until age 15 in New Brunswick but is truncated for unknown reasons at that age.  I am not aware of any other medical disorder which this province or any other province cuts off at an arbitrary age when it is well known that severely autistic adults require care for the rest of their lives.

Permanency should also be a factor of adult residential care.  Many autistic adults, particularly severely autistic adults, suffer when their daily lives are disrupted.  This fact does not appear to be factored at all into the decision making of the comfortable civil servants who have resisted for a decade the establishment of a permanent  level adult care facility which could provide permanent residential care for the severely autistic along with treatment and temporary care and treatment for those with greater functioning levels.  The facility could also act as a centre to ensure that autism specific group homes include autism trained staff and some professional oversight. 

New Brunswick has proven itself to be a humane and innovative, even a recognized model,  province  in the treatment and education of autistic children and youths. It truly puzzle me and concerns me more as my son and I both grow older  why we do not extend the tertiary level care we provide to autistic youth to autistic adults and why we do not develop the autism treatment centre and group home network system suggested by Professor Emeritus Paul McDonnell in a 2010 Election CBC interview.  What are our civil servants afraid of?  Whey do they not care about the needs of autistic adults, particularly those with severe autism disabilities?

Band Aid solutions have not provided the systemic adult autism care and treatment that is required in New Brunswick.  It is time to extend the innovative but evidence based approaches to autism care , treatment, and education to autistic adults in NB.  It is time to end the age based discrimination against NB autistic adults. 

Canada's Autism Awareness Month Message: Autistic Children Become Autistic Adults

Autism Awareness Month:

Autistic Children Become Autistic Adults

October is Autism Awareness Month in Canada.  As a father of an 18 year old son with severe autism disorder, profound developmental delays (like 50% of the autism spectrum according to the World Health Organization) and seizures which also affect many with autism I can tell you from personal experience that autistic children become autistic adults. Enjoy your child's early years and student years but do not forget that they will grow up and many will need enhanced adult autism residential care and treatment.

With other parents of autistic children I began advocating 15 years ago for evidence based early autism intervention.  Like those other parents my son did not receive the early intervention services which many autistic children in NB now enjoy.  We knew it would not be put in place in time to help our kids,  but it was the right thing to do, to advocate first for early autism intervention. We also advocated for autism trained TA's, education assistants, whatever the term du jour is now,  and my son and others did, and still do, benefit from our advocacy as do many other autistic students in NB today.  We may have been the early "wave" of parent advocates but we are still part of the picture today particularly in advocating for adult autism care and we ask you to join us but do not make the mistake of thinking we will "step aside".  Parent autism advocacy is not a "wave" it is a life long necessity; a life long commitment ... for all of us.

Absolutely no progress has been made on adult autism services and I ask parents whose children enjoy the benefits of early autism intervention and student autism services to think ahead and help advocate for the adult autism services our children need and many of your children will also need.  Some have already started advocating for improvements in early intervention and improved autism education services.  A group has also started a petition and joined the fight for an enhanced autism group home system around the province, as described in 2010 by Professor Emeritus (Psychology) Paul McDonnell,  with a residential care centre for the most severely autistic, a centre which would also include professional expertise to assist the regional group homes.

The online petition is a good idea and I urge everyone to sign the petition.  I also ask you to consider sending a personal email, fax or letter to your MLA.  I believe, based on my 15 years of autism advocacy, with the ASNB, personally, and as a legal advocate for some autistic students, resident of a group home and an individual who resided in the Psychiatric Hospital in Campbellton for 4 and 1/2 years, that the personal mail/email communications will carry additional weight. 

Whatever you do enjoy your autistic child as he or she grows and develops, as you would any child, but please do  not forget that many of your children will face complex challenges throughout their lives and will need you as their advocates for as long as you can be of assistance.  We can be of assistance to each other if we work together selflessly and for the benefit of our autistic children, adults and family members.

Respectfully,

Harold L Doherty
AutismRealityNB@gmail.com

Will DSM5 Result In Some Very High Functioning Autism Personalities Losing Their Autism Disorder Diagnoses?

I have a son with a DSM-IV Autistic Disorder diagnosis who is also assessed with profound developmental "delays".  I have expressed my concerns on several occasions about the terms of category A of the new Autism Spectrum Disorder in the DSM5:

A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following: [emphasis added -HLD]

My concern has been that people like my son who are currently considered autistic with intellectual disabilities will lose the autism diagnosis with serious repercussions both in receipt of services, and in research and understanding affecting their  disabilities.

With the newest round of "beautiful mind", autism is an advantage not a disorder, activism by autism "researchers" Mottron and Dawson I have wondered again whether the DSM5's new Autism Spectrum Disorder could result in loss of autism diagnoses for several prominent "autism" personalities.  By autism I am referring to the tendency today to refer to PDD-NOS and Asperger's Disorder as also constituting autism along with Autistic Disorder.  Contrary to the activist ideologies and beliefs of Mottron and Dawson persons with diagnoses from any  of these categories will clearly and expressly require impairments in daily functioning in order to qualify for an Autism Spectrum Disorder diagnosis under the DSM5:

"Autism Spectrum Disorder


Must meet criteria A, B, C, and D:


D. Symptoms together limit and impair everyday functioning."

Even without the clear language of the DSM5 requiring impairment of everyday functioning, further divided by levels of severity of impairment, it has always been difficult for me to understand how or why some very high functioning autism personalities ever received a mental health disorder diagnosis  under the DSM-IV when they are obviously very high functioning.  

Autism personalities, including Michelle Dawson, Ari Ne'eman and John Elder Robison have all realized considerable success in life, in university, in self owned business activities, in challenging work environments like Canada Post Corporation, in making legal representations to administrative tribunals and the Supreme Court of Canada, in acting as researchers and as activists promoting their views of autism disorders before government committees. Some have married and raised children while others have maintained professional relationships lasting several years. It has never been at all clear to me why any of them would want a label which reflects a mental disorder under the DSM-IV given their great successes in meeting life's challenges.

With great regularity these autism personalities also appear in various major media productions advocating  their perspectives on what it means to be an "autistic" and, in Dawson's case, advocating against government funding of ABA treatment for autistic children, other people's autistic children.   When the public turns on their television, reads their daily newspapers or browse the internet for news of autism they do not see, with any regularity, the many persons with autism disorders engaging in serious self injurious behavior, wandering from their homes and schools, and into dangerous traffic and waters.  The public does not see the many persons with autism living in group homes, hospitals and psych wards. No, the public sees Michelle Dawson, Ari Ne'eman, J E Robison and other very high functioning "autistics" and they see them over and over and over again. 

The DSM5's new Autism Spectrum Disorder label is actually misleading in so far as the condition could now more accurately be called Asperger's Spectrum Disorder. But it does expressly require, as a mandatory condition for receiving an ASD diagnosis, that Symptoms together limit and impair everyday functioning.

Will Dawson, Ne'eman and Robison be able to demonstrate, despite their well known abilities and successes in various areas of life, that somehow they possess social and communication challenges, along with restricted, repetitive patterns of behavior, interests, or activities and that together these deficits limit and impair their everyday functioning?  


Or will the day arrive when very high functioning autism and Neurodiversity  activists practice some reality acceptance and acknowledge that they do not suffer from an autism disorder, or any other mental disorder,  and that they are in fact capable, competent and accomplished individuals who should not be trying to dictate to parents and professionals alike what it means to have autism ... autism disorder?

FOCUS: Autism Speaks Research Focuses on Brain Pathways and Possible Medicines

When I read the headline New Hope in Autism Fight, an article in the Wall Street Journal by reporter Melanie Grayce West, my first thought was Yeah Sure, Another Ill informed Feel Good Autism Puff Piece in the Mainstream Media.  My first response was wrong.  The article was brief and to the point and provided direct quotes from someone who knows what she is talking about when it comes to autism disorders, Dr. Geraldine Dawson. It set out succinctly  the very clear, and important, focus of Autism Speaks funded research ... research aimed at developing new methods of autism diagnosis and treatment. The comments  provide a rational and informed basis for the optimism expressed in the title. 

The article began by reporting another large contribution to Autism Speaks by Summer Redstone and outlined briefly some of his other generous contributions to medicine and health care. It included  a no nonsense realistic description by Dr. Dawson of autism disorders and the challenges they present to those who suffer from them.  Not a whiff of  feel good "autism is beautiful" stuff. It indicated  point blank that autism is increasing without any of the usual attempts to obscure the increase that often accompany reports of new increases in autism rates. What I found most interesting though was the concise and clear description of the focus of Autism Speaks research:

The core of the current research conducted by Autism Speaks focuses on translating the basic biology that researchers have learned about autism into new methods of diagnosis or treatment. The science suggests that even though autism has many different genetic and environmental causes, their effects may converge on a set of common pathways in the brain.

"For the first time we have the possibility of developing medicines that could help to restore the function of these pathways," says Dr. Dawson. Ultimately these medicines would help to reduce the core symptoms of autism.

In the next few years, the biggest challenge to researchers will be to develop medicines that would be useful for the broader, general population of people with autism.

"We are actually very hopeful at this point that we will be able to conduct clinical trials with people with autism in the upcoming few years," says Dr. Dawson. "That's never been done. We've never really been as hopeful as we are now."


I hope that Autism Speaks does not abandon any of its contributions to researching the causes of autism, particularly to the woefully underfunded environmental causes of autism, but I am very pleased with the efforts to find new treatments.  The goals of exploring the biological basis of autism disorders, the common pathways in the brain implicated in autism disorders, and Dr. Dawson's expression of optimism that medicines aimed at restoring the functions of those pathways will be developed in the upcoming years is clear, sensible and ... focused.  It is that focus which is so important and which I had begun to think was missing in Autism Speaks' activities.

Many parents hope for the development of treatments, of medicines, which will help their autistic loved ones but many of us grow skeptical, if not outright cynical, after seeing so many false starts and so much spin and hoopla over very little.  Dr. Dawson has stated that she and Autism Speaks are actually very hopeful for development of new medicines that will actually help the general population of persons with autism disorders and explained why they feel that way.  I believe she is speaking honestly and is in a position to know what she is talking about.

I am, once again, optimistic about Autism Speaks and the future of autism research.

Evidence Based Autism Treatment: What the New York Times Didn't Say About Dr. O. Ivar Lovaas

The New York Times has now published an  obituary on the passing of Dr. O. Ivar Lovaas.  It is generally a fair commentary if understated in describing his positive  impact on the lives of autistic children.  The NYT summary of Lovaas therapy doesn't  really seem to get it though, doesn't  really seem to understand  why so many people, parents and authorities, seek  Lovaas ABA therapy for autistic children despite the cost:

Though Lovaas therapy can cost tens of thousands of dollars a year, parents of autistic children clamored for it. In 1995, Dr. Lovaas founded the Lovaas Institute, based in Los Angeles, which trains teachers in his method. Today, thousands of children throughout the United States and abroad are receiving Lovaas therapy.

The NYT fails to demonstrate that it  fully understands why  the Lovaas method  is so widely sought and applied by parents and others interested in actually helping autistic children .... the evidence base in support of its effectiveness. The NYT makes no mention of the  numerous credible health authorities, including the office of the US Surgeon General, that  reviewed hundreds of ABA studies and concluded that it is the only evidence based effective intervention for helping autistic children.  

Dr. Lovaas more than anyone else advanced the evidence based approach to helping autistic children that has made ABA the intervention that so many parents "clamor" for as the NYT puts it somewhat condescendingly.  The evidence in support of the Lovaas ABA method is what persuaded so many parents that it was the treatment on which to wager their children's precious early development time.  The evidence in support of  ABA is what assisted parents in Canada and the US in advocating for the provision of treatment for their autistic children.  

The New York Times can not bring itself to say outright what many parents  and public health authorities  know ... that Dr. Lovaas  was one of the very few who have actually helped autistic children. 

Autism Residential Care and Treatment Facility Needed in New Brunswick

The following letter appears in the May 13, 2010  Letters to the Editor Section of Fredericton Daily Gleaner and is an edited for length version of a post published recently on Facing Autism in New Brunswick and forwarded to our political and public service leaders.

Residential care and treatment facility needed

Re: Help for autistic adults in New Brunswick

I am writing as the father of a 14-year-old son with severe Autistic Disorder and within 48 hours of the deaths of severely autistic 22-year-old Benjamin McLatchie, and his father Daniel McLatchie, in nearby Gray, Me.

The Maine state medical examiner's office has ruled the case a murder-suicide. The father shot and killed his son and himself.

Reports describe the father as a caring, stay-at-home man who despaired for his son's future, in a state with inadequate residential care for autistic adults, after his own inevitable passing.

There is speculation that the father's fears and despair might have prompted this tragedy.

Many parents, including here in New Brunswick, fear what awaits our autistic children after our passing.

In New Brunswick, the governments of former-premier Bernard Lord and current Premier Shawn Graham have both been world leaders in helping our autistic children. The same cannot be said with respect to autistic adults.

Autistic children aged 2-5 can receive government funded early intervention program from trained service providers. The Stan Cassidy Centre's autism pediatric tertiary care team is of great assistance to many autistic children.

The UNB-CEL Autism Intervention Training program has received expert recognition for its program and has trained several years worth of early intervention workers, teacher assistants and resource teachers in autism specific interventions.

Many autistic children have received the benefit of a flexible, student-oriented approach to educating autistic children in neighbourhood schools, where those autistic children, who can learn in a regular classroom, do so. Those, like my son, who require more individualized curriculum and training methods and place of learning adaptations, do so in environments structured for their specific needs and strengths.

In adult care, however, New Brunswick has been stalled.

We have not established a residential care and treatment system that would provide assurance of a decent, respectful future for those autistic adults who will live dependent on the care of others - adults like Benjamin McLatchie in Maine.

Group homes are not adequate for all of New Brunswick's autistic population.

Right now, many parents are struggling desperately, and facing severe challenges, while trying to care for their adult autistic children at home.

The most severely, low functioning autistic adults live at the psychiatric hospital in Campbellton, far from parents and loving family members.

Of urgent importance has been the need for a geographically centralized combined residential care and treatment facility for autistic adults in Fredericton - close to the resources and expertise of the Stan Cassidy Centre, the UNB-CEL Autism Intervention Training program, and the University of New Brunswick Department of Psychology.

Harold L. Doherty

Fredericton

In Future Will Autism Spectrum Disorders Be Referred To As Brain Connectivity Disorders?

Another study has been published, the results of which, according to Science Centric,adds to evidence that autism is a brain 'connectivity' disorder. I had previously commented on brain connectivity in April 2009 noting that a study at that time was supportive of a previous,  2006,  study linking autism disorders to brain connectivity issues: Autism's Four C's: Cerebellum, Connectivity, Coordination, Communication.  If further study results indicate that autism deficits arise from brain connectivity disorders will the autism spectrum disorders come to be known as the Brain Connectivity Disorders?  More importantly, if brain connectivity is the biological problem that gives rise to autism disorders will  effective treatments and cures be developed targeting the connectivity issues?

As reported on Science Direct the study's lead researcher Mustafa Sahin, MD, PhD, of Children's Department of Neurology, made statements that hold out some hope that treatments might ultimately result from further brain connectivity research :

"'People have started to look at autism as a developmental disconnection syndrome - there are either too many connections or too few connections between different parts of the brain,' says Sahin. 'In the mouse models, we're seeing an exuberance of connections, consistent with the idea that autism may involve a sensory overload, and/or a lack of filtering of information.'

Sahin hopes that the brain's miswiring can be corrected by drugs targeting the molecular pathways that cause it. The mTOR pathway is emerging as central to various kinds of axon abnormalities, and drugs inhibiting mTOR has already been approved by the FDA. For example, one mTOR inhibitor, rapamycin, is currently used mainly to prevent organ rejection in transplant patients, and Sahin plans to launch a clinical trial of a rapamycin-like drug in approximately 50 patients with TSC later this year, to see if the drug improves neurocognition, autism and seizures."

This is one father of a severely autistic son who is hoping that such research does lead to viable autism treatments and cures.  I want my son to have the opportunity to participate as fully in life as I have done.   Correcting connectivity issues that would enhance his understanding of the world?  Absolutely.

autism

Autism Treatment Study Using ABA and TMS - Repetitive Transcranial Magnetic Stimulation

The University of Louisville has received NIH funding to conduct a clinical trial of an autism treatment that combines magnetic stimulation with ABA therapy. My first reaction when I read about magnetic stimulation as a possible autism treatment was to assume it was some wonky swimming with dolphins type of autism "treatment". But the University of Louisville news release provides an interesting explanation for the theory behind magnetic stimulation as a possible autism treatment.

A previous pilot study had shown that "repetitive transcranial magnetic stimulation (TMS), creates an electric current that enhances specific cells’ ability to protect the brain from sensory overload in one region of the brain". The researchers believe this eases sensory overload permitting greater focus on learning. The new study will use a higher frequency, twice the number of sessions and will also utilize ABA therapy.

Obviously TMS is not, at this time, an evidence based treatment for autism. The only way that new treatments can be developed and acquire an evidence based status is through study and experimentation. I assume that with the involvement of the NIH and the University of Louisville all necessary ethical and safety protocols for the participants will be followed. Hopefully the results will indicate a way to help enhance the learning abilities of persons with autism. As I read the press release the study may also disclose more information generally about brain connectivity issues and autism disorders:

NIH to fund U of L clinical trial of autism treatment

EUREKA award recognizes high impact, innovative research

LOUISVILLE, Ky. – A promising treatment of autism has earned National Institutes of Health funding for University of Louisville researchers. This award will fund a clinical trial that combines magnetic stimulation with behavior therapy in people with autism. Researchers believe this approach will ease major symptoms of autism, which in turn will help participants focus on therapy to improve social interactions.

“This study, which builds on discoveries made here at UofL in the last five years, offers a new kind of hope for people with autism. It has the potential to change science’s way of thinking about autism treatment,” said Larry Cook, UofL executive vice president for health affairs.

“We have focused on using our new understanding of brain function to treat autism, instead of using medications to remediate its consequences,” explained neuroscientist Manuel Casanova.

The $900,000 NIH award will fund a four-year clinical trial.

Casanova and a team of researchers previously mapped the way tiny strands of brain tissue called cortical cell minicolumns develop and connect. Their research suggests that minicolumn defects interfere with information processing because a lack of “sound-proofing” between minicolumns leads to sensory overload, which magnifies underlying social and communication deficits.

A pilot study confirmed that people with autism have fewer tantrums and repetitive behaviors symptomatic of sensory overload after a low-frequency magnetic field is pulsed around their brains through a coil placed near the scalp. This process, known as repetitive transcranial magnetic stimulation (TMS), creates an electric current that enhances specific cells’ ability to protect the brain from sensory overload in one region of the brain.

“Neurological and psychological test results and brain activity measurements tell us that TMS helps with the symptoms that people with autism find most distressing,” Casanova said. “We believe that relief will give them the opportunity to learn to be more social adept and emotionally responsive.”

In this trial, patients will receive a higher frequency of magnetic stimulation and more than twice the number of sessions administered in the pilot study. This treatment will be paired for the first time with applied behavior analysis (ABA) to help participants learn and practice socially appropriate methods of relating to other people.

This study also makes use of new understanding about the brain’s innate connectivity. The brain of a person with an autism spectrum disorder is structured to make short, local connections between minicolumns as it processes information. The TMS treatment focuses on cells in specific regions of the brain and then relies on the cells’ connectivity to communicate the change to other regions.

“This connectivity allows us to train other regions of the autistic brain to manage the noise that causes sensory overload without sacrificing the talents that result from the natural brain structure,” Casanova said.

The National Institutes of Health’s EUREKA (Exceptional, Unconventional Research Enabling Knowledge Acceleration) program funds researchers who are testing exceptionally novel, unconventional research that could yield an extremely high impact on research.

Researchers are targeting children from the Louisville metropolitan area for this trial. Parents who want to inquire about the study should call 502-852-0404.

autism

Autism's Invisible Adults in New Brunswick

Much progress has been made here in New Brunswick (Canada) to help autistic children over the past 6 years. Despite substantial advances for autistic children though almost nothing has been done to improve the lives of autistic adults here in New Brunswick.


Many problems and gaps in service delivery for autistic children still exist but we do have government funded early intervention for autistic children with service provided by staff trained at the UNB-CEL Autism Intervention Training Program. UNB-CEL has also begun providing autism specific training Teacher Aides and Resource Teachers. ABA is used in our schools, my son has received ABA based academic instruction for 4 1/2 years. Accommodations have been made in the form of differentiated learning environments. My son is instructed in a small room separate from the mainstream classroom at our request and visits the mainstream classroom, the gym, the pool, the kitchen and the grounds for various activities that exposed him to other children who regularly greet him during my visits.

Government, the media, the public, autism organizations and autism advocates, we all ignore too often the needs, the realities even the existence of autistic adults particularly the severely autistic.

Out of necessity in New Brunswick autistic youths and adults in need of extra care and attention have been sent out of the province, even out of the country, to receive treatment. Autistic adults have lived, and continue to live. in psychiatric hospitals, at least one has even lived on the ward of a general hospital in Saint John. An autistic youth was kept on the grounds of a youth correctional centre in Miramichi New Brunswick until an opening could be found for him at Spurwink a facility operated by our good neighbors in the state of Maine.

New Brunswick's autistic adults need an autism specific group home system. The current system involves placing autistic adults in need of assisted living in general group homes with no staff specifically trained to address the needs of autistic adults. One such home closed with only 24 hours notice.

The most pressing need for New Brunswick's most invisible autistic citizens, the severely autistic is for a multi-level residential facility which could also provide treatment or proximity to treatment. I have visited the Restigouche Regional Psychiatric Hospital in Campbellton New Brunswick where some of New Brunswick's severely autistic adults live. I was very impressed by the management of the facility. It is a necessary residence for some New Brunswick adult autistic persons because of the absence of a modern autism specific residential facility. But it is not the home I would want for my severely autistic son when I am dead or otherwise unable to care for him. Nor do I want if for other severely autistic adults as they age.

Autism is a spectrum of disorders. The spectrum aspect though is often ignored .. by all of us. The adult, aged autistic element is also ignored ... by all of us. Here in New Brunswick we need a multi-level autism residential facility, centrally located, with access to other autism specific resources available in Fredericton to provide expertise to assist in the operation of the facility.

Autistic adults, particularly the severely autistic, need such a facility in New Brunswick now. The truth is they needed it years ago. We can't change the past but we can make a future different from that past. If we start NOW.

autism

Time To Take Autism Seriously - Utah Man With Severe Autism Found

Even the cases of two young men with severe autism implicated in homicides, one involving his mother, are not enough to shake some "joy of autism" Neurodiversity followers from misrepresenting the realities of autism. Even some well intentioned, polite people just don't get it. They just refuse to see the harsher realities faced by some autistic persons.

In Utah another event highlighting the serious realities facing some with autism and their families has developed since Sunday evening when severely autistic 20 year old Justin Bailey went missing. It is now being reported on ParkRecord.com that Mr. Bailey has been found and appears to be OK.

Autistic children and adults go missing with some frequency. My own severely autistic son went missing while I was occupied on a business phone call several years ago. He crossed a busy commercial street near our home before a Good Samaritan stopped his vehicle and took him to an adjacent convenience store where the police were contacted and where I was able to retrieve him after calling 911.

Last year we were all relieved to learn that an autistic man, Keith Kennedy, was found alive in the woods and was OK almost a week after he wandered away from the camp at which he was staying in Wisconsin. It does not always end as well as it did for Keith Kennedy and Conor Doherty and as it apparently has for Justin Bailey.

Wandering, and the dangers of every day life that some severely autistic persons do not understand, are very real challenges that should not be ignored in an effort to present a "posautive" view of medical disorders, of autism disorders. We must continue to provide ABA to help autistic children develop to their fullest potential. We must seek even more effective treatments ..... and cures ..... for autism disorders.

autism

No Autism Funding Just Jibber Jabber In Harper Budget

Shelly Berman as Judge Robert Sanders on Boston Legal
"What is this jibber-jabber? I don't like jibber jabber in my courtroom"

Senator Jim Munson, who has been an unrelenting advocate on behalf of Canadians with autism disorders and their families, questioned Marjory LeBreton (Leader of the Government and Minister of State (Seniors) yesterday over the lack of funding for autism in the Harper government budget:

"Hon. Jim Munson: Honourable senators, my question is for the Leader of the Government in the Senate. Last week's federal budget talked a lot about infrastructure. My question is about another kind of infrastructure, namely, social infrastructure.

(1505)

I talked about it yesterday, as did Senator Oliver, in dealing with autism. I do not need to go over all the figures. One in 150 families is affected by autism.

Parliament has taken steps. We lobbied hard and Minister Clement listened and did some work.

Will the government consider taking a further step to create a division for autism within the Public Health Agency of Canada so that this condition can be looked at, receive the attention it deserves, and families can receive the help they so desperately need? I am looking for that national leadership focus.

Hon. Marjory LeBreton (Leader of the Government and Minister of State (Seniors)): I am well aware of the honourable senator's hard work on the subject of autism.

As the honourable senator knows, when Minister Clement was Minister of Health he set up a research chair to study ways to move this issue forward. Autism is one of many conditions that falls within the purview of provincial departments of health and, of course, health care is delivered by the provinces.

With regard to the budget, a great deal of money has been set aside at universities for research in science and technology. It is hoped that indirectly, through the money that has been provided to universities, to the science community and to the health system, in addition to all the money that the government transfers to the provinces for health care, the treatment of autism will move forward quickly in the near or immediate future.

With the budget and the actions that the government has taken, in our consultations in various areas, we have tried to reach out to the good suggestions that are there, including the worthy ones of the honourable senator.

I am sure that Minister Aglukkaq � who is from the North, I am happy to say � and her officials, will have reviewed the files that Minister Clement was working on in terms of autism. I cannot say definitively what they are but I will find out."

Debates of the Senate (Hansard) 2nd Session, 40th Parliament,
Volume 146, Issue 7 Thursday, February 5, 2009

The reply by the Honourable Marjory LeBreton betrays no actual knowledge of autism or the evidence based effective autism intervention, ABA, that so many autistic Canadian children require to help them overcome their deficits and live fuller lives. In case someon on Ms LeBreton's staff Stumbles Upon or otherwise inadvertently reads this blog site I offer the following information from the American Academy of Pediatrics, also found on the upper right hand corner of this blog site:

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

I also bring to the attention of the Honourable Ms LeBreton that many autistic Canadian adults are living in reprehensible residential care facilities if they are lucky and are not simply living on the ward of a general hospital as has occurred here in New Brunswick. Some are actually exported to the United States to receive residential based treatment not available here in New Brunswick and other parts of the country.

Please Ms LeBreton, stop posturing with nonsense about autism research dollars. Canadian research for autism is not generally directed at finding cures or treatment for autism. At least some of it goes to researchers more interested in promoting feel good "autism is beautiful" nonsense.

If Ms LeBreton has a conscience, and any integrity, I ask her to please stop with the "jibber jabber" (parents advocating for autistic family members have heard it for years) and start talking about funding ABA services for autistic children and decent residential care and treatment facilities for autistic adults wherever they happen to live in Canada.

autism

This Christmas This Autism Dad Says Thank You

I started this blog as an extension of the autism advocacy in which I have been engaged for the past 10 years. Here in New Brunswick, Canada parents who were active autism advocates fought to secure pre-school government funded ABA intervention by University of New Brunswick trained Autism Support Workers and Clinical Supervisors. We also fought to extend that service model into the school system where UNB trained Teacher Aides and Resource Teachers provide ABA instruction to autistic students. While far from perfect, these efforts make New Brunswick one of the best jurisdictions in Canada or the United States in which to raise autistic children.

We had substantial assistance in our efforts from parents in British Columbia (Auton) and Ontario (Deskin-Wynberg) who fought court battles, ultimately unsuccessfully, but whose cases provided careful public examination, particularly in the trial level courts, of the existing scientific thought about autism and effective autism intervention - meaning Applied Behavioral Analysis. We had help from the United States where, unlike the Canadian health and research authorities, credible agencies like the US Surgeon General, the New York State Department of Health and the Maine (MADSEC) Autism Task Force reviewed decades of research and provided clear, coherent guidance and authority for use in our autism advocacy. God Bless America!

We had the intellectual leadership of Professor Emeritus (Psychology) and Clinical Psychologist Paul McDonnell and the organizational savvy and drive of Ann Higgins of the University of New Brunswick College of Extended Learning. They provided us with a clear focus on evidence based approaches to autism interventions and the means by which to obtain such interventions for our autistic children.

We had the considerable abilities and inspirational support of a very smart gentleman with Aspergers named Jason Oldford who demonstrated his own determination in addressing his challenges with every meeting and with his public speaking efforts. And we had a core group of very, very tenacious parents of autistic children who put a lot on the line with their family time and careers in the nursing, military, financial services, and a variety of other occupations.

To the autism support workers, clinical supervisors, teacher aides, resource teachers, educators and civil servants, to all these people and to our New Brunswick politicians who listened and did the right thing I say thank you. Much more remains to be done, particularly in youth and adult residential care, but for what we have today I say again thank you.

I also thank Autism Speaks, an organization which has done great work in creating Autism Awareness and raising funds for research. Autism Speaks did not exist during most or our local autism advocacy and has made no direct contribution to autism efforts in this area. It is an organization under attack from all quarters these days from those who assert that vaccines cause autism to "neurodiversity" advocates and persons with Aspergers and High Functioning Autism who oppose the very concept of curing and treating autism. Even some internet blogging parents who want immediate help in their efforts to help their children now attack Autism Speaks.

Personally I believe Autism Speaks should be criticized like any organization BUT I also believe that it has done unbelievably great work in publicizing and raising awareness of the realities of autism disorders from the various walks, entertainment industry events, and stock car racing events to the United Nations' World Autism Awareness Day.

Autism Speaks has been very active in raising funds for research and research is what has provided the foundation for gains made by autistic persons everywhere. CNN and CBC will continue to interview a few high profile, gifted autistic persons who will explain why THEY do not want to be cured of their autism. But for the millions of people around the world, and their families, who actually struggle with autism challenges, research is the only direction that offers hope for the future and hope that more effective treatments and cures will be found for the neurological disorders now referred to as autism spectrum disorders and Autism Speaks is a driving force behind much of that research. Hopefully the research sponsored by Autism Speaks will not be limited by any specific ideological perspective except that of actually helping autistic persons. Hopefully Autism Speaks will sponsor both genetic and environmental research into autism cause and cure.

For now though this "autism dad" says thank you to everyone who has helped us with our present achievements here in New Brunswick and thank you to Autism Speaks for your tremendous efforts to date and for offering hope for the future.

autism

Nova Scotia's Immoral Autism Treatment Lottery

In Helping kids with autism shouldn't be a lottery Bobbi-Lynn Hall reports on Nova Scotia's lottery system, a system which is clearly and obviously morally bankrupt. I do not make that characterization lightly. I was born in Waterville, Kings County, Nova Scotia, bordered by Annapolis, Lunenberg and Hants County. My parents, a brother and three sister and their familes, my aunts, uncles, cousins, great uncles and aunts, most of my extended family lives in Nova Scotia. I vist regularly.

I find it hard to accept that Nova Scotia reduces the lives of autistic children to a game of chance, to a lottery system, that determines which children receive the ABA treatment that has been well documented over decades of studies as an effective intervention that dramatically improves the life skills and outlook for autistic children. As Bobbi-Lynn Hall stated:

In Nova Scotia, there are children receiving Early Intensive Behaviour Intervention, a treatment proven to improve vocabulary and social skills and reduce behaviour issues in most children with ASD, but it's based on a lottery system.

We all talk about how great it would be to win the lottery and what we'd spend the money on. But what if your child's future was dependent on winning a lottery and what if you didn't win? Would you be thinking maybe if you had picked a different number, or maybe if you had bought your ticket last week instead of this week, that maybe things would have been different and maybe your child would be the one receiving the treatments that could help him experience things that otherwise may not have been possible?

The people of Nova Scotia are good and decent people. But the government of Nova Scotia ,in reducing the life prospects of autistic children to a game of chance, is acting immorally. The people of Nova Scotia are better than that. And their autistic children deserve better.

autism

The Two Autism Faces of Greg Thompson

When it comes to federal financing of autism treatment for Canadians with autism Conservative MP Greg Thompson, Southwest, New Brunswick has presented two decidedly different faces.

FACE # 1 - Opposition MP Greg Thompson

House of Commons, Hansard, Wed. Sept. 28, 2005.

Statement by Members

Autism

Mr. Greg Thompson (New Brunswick Southwest, CPC):

Mr.Speaker, today along with other members of the House and parents of autistic children, I attended a rally on Parliament Hill urging the federal government to provide financial support to cover the cost of treatment for every child diagnosed with autism.

Autism rates are on the rise in Canada. This neurological disorder affects 1 in every 195 of our children.

Therapy which has been credited in helping children overcome the effects of autism can cost a family up to $60,000 a year. These families and children need our support and I urge the federal government to take the steps necessary to address this important issue.


FACE # 2 - Government MP & Cabinet Minister Greg Thompson

HOUSE OF COMMONS OF CANADA 39th PARLIAMENT, 1st SESSION No. 115 (Unrevised) Wednesday, February 21, 2007 1:00 p.m.

Private Members' Business

Pursuant to Standing Order 93(1), the House proceeded to the taking of the deferred recorded division on the motion of Mr. Murphy (Charlottetown), seconded by Mr. Szabo (Mississauga South), — That Bill C-304, An Act to provide for the development of a national strategy for the treatment of autism and to amend the Canada Health Act, be now read a second time and referred to the Standing Committee on Health.

YEAS: 113, NAYS: 155


NAYS -- CONTRE

Thompson (New Brunswick Southwest)

There it is. On September 28 2005 Greg Thompson, wearing Autism Face # 1, sitting as an opposition MP, rose in the House of Commons, not at a local backyard Bar-B-Q or in a beer drenched tavern, but in the House of Commons, to urge the federal government to address the important issue of financing treatment for autistic children in Canada. Then 15 months later, on February 21, 2007, wearing Autism Face # 2, now sitting as a MP and Cabinet Minister of the governing Conservative Party he voted NAY , he voted against, the Private Members' bill of MP Shawn Murphy which, if passed, would have required the federal government to do exactly what Mr. Thompson had previously urged a different federal government to do?

How to explain the Two Autism Faces of Conservative MP Southwest, New Brunswick, Greg Thompson? Was he being shallow and insincere when he wore Autism Face # 1, using the plight of autistic children and their families for political purposes? Or did he simply lack the courage of his convictions; was he afraid to stand up to Conservative Prime Minister Harper when he donned Autism Face #2 and voted against Bill C-304 which would have provided for federal government funding of autism treatment?

Only Greg Thompson knows for sure.

autism

Behavioral Treatment of Autism Conference Feb 8-10, 2008 in Atlanta

If you are a parent, professional, caregiver or service provider working with autistic children, you may want to consider registering for and attending the Association for Behavior Analysis conference scheduled for Feb 8 - 10 in Atlanta. Issues and Recent Advancements in the Behavioral Treatment of Autism: Practical Strategies for Changing Behavior at Home and School will feature 10 keynote speakers who will focus on two themes: home- and community-based interventions and curriculum and instruction in the classroom/school, which should be of interest to professional behavior analysts, teachers of preschool and school-age children with ASD, adult service providers, in-home behavioral therapists, caregivers, teacher trainers, and students.

autism

The Real Autism Argument

Sally Eva, as quoted in the Independent, summarizes nicely one of the most intense points of discussion in world autism debates:

"People with autism range from those at the severe end who can't tell a person from a post to those at the mild end who may be madly over-communicative. The NAS employs people with autism so it is over-influenced by those at the mildly affected, employable end of the spectrum. The real argument is between people who believe in "neurodiversity" – that autism is on the normal spectrum and we should work for more public acceptance of it – and those who believe it is a medical condition that needs treating."

- Sally Eva, UK, Parent of a 15 Year Old Daughter with Autism

Autism, ABA and the Importance of Accurate Data

If parents seeking treatment for their autistic children are interested in getting past ideological rhetoric and ill informed opinions about ABA, applied behavior analysis, they would be wise to consider information available from sources like Alan Harchik chief operating officer of May Institute, a US national nonprofit organization that provides educational, rehabilitative, and behavioral healthcare services to individuals with autism and other developmental disabilities, brain injury, mental illness, and behavioral healthcare needs.

One of the great strengths and distinguishing features of ABA is the data keeping. In Autism studies need accurate flow of data Mr. Harchik stresses the importance of collecting accurate information about academic performance and problem behaviors; one of the distinguishing characteristics of using applied behavior analysis when working with children with autism and other developmental disabilities. This behavioral data provides an actual measure of a child's progress, can be shared with members of a child's interdisciplinary team, and allows for thoughtful, informed decisions about possible changes in procedures and treatments. In this article Mr. Harchik offers some practical suggestions on how to ensure the accuracy of this important information.

Mecamylamine Autism Treatment To Be Tested

Mecamylamine is a drug used in the 1950's to treat high blood pressure. It has more recently been used as a treatment for symptoms associated with Tourette's Syndrome and Attention Deficit Disorder. Now, it is about to be tested by a team at Ohio State University Medical Center as a treatment for autism symptoms:


It turns out the next new treatment might be something that's been around for generations. It's a drug called mecamylamine, and it was the first pill used to treat high blodd pressure in the 1950's.*** By the time Alicia was a child, it was nearly obsolete. Now, it just might help her son, and a million more children with autism.

"If it works, it would be a really important breakthrough," says Eugene Arnold, MD, with Ohio State University Medical Center. Dr. Arnold and his team of researchers will test the drug on children with autism. He says it's not what the drug did in the 50's to help with high blood pressure that's giving them hope, but what it's done recently. Mecamylamine has been effective in helping children control the symptoms of conditions like Tourette Syndrome and Attention Deficit Disorder. He hopes it may do the same in autism.

"There is some hope that it will make a significant improvement in the core symptoms: the social impairment, the communication, the repetitive behavior, such that it will help them to faster get along the road to rehabilitation," says Dr. Arnold.