Saturday, February 23, 2013

Off To The Autism Resources Miramichi AGM!

I am thrilled to be heading off shortly for Miramichi to attend the Annual General Meeting  of Autism Resources Miramichi Inc. at 139 Duke St. Starting at 12:00 noon.   ARM has been kind enough to offer me an opportunity to speak and provide an overview of the history of autism advocacy in New Brunswick over the past decade and to address our most pressing need .... adult autism care.  

Lila Barry of ARM is a former Autism Society New Brunswick president and was one of our most active and effective advocates for autism specific early intervention and school services and accommodation.  It will be great to see Lila and her family and other friends from the Miramichi.   I will head up early so that I can drive slowly and hopefully see some opportunities to take a few pictures along the way. 

If anyone from the area reads this blog I hope to see you at noon today!

Wednesday, February 20, 2013

Conor's Autism Diagnosis 15 Years Ago Today

Conor, 2nd Birthday, the day before he is diagnosed with 
PDD-NOS (subsequently changed to Autistic Disorder)

Yesterday was Conor's 17th birthday.  Today is exactly 15 years since he was diagnosed with an autism disorder, PDD-NOS, the day after his second birthday shown in the pictures above.  Shortly afterward he was re-diagnosed with Autistic Disorder, and he was also subsequently assessed with profound developmental delays.  I can't say that I am overly impressed with the research into autism causes, treatments or even our understanding of what constitutes autism that has taken place in the last 15 years.   15 years ago intensive early behavioral intervention was the only seriously evidence based intervention for autism as it remains today. 15 years  after Conor's initial diagnosis there are no substantial breakthroughs in understanding the biological basis of autism as the goal posts keep getting moved to allow the dominance of genetic autism research to continue and to continue with the lion's share of research dollars. Today, like 15 years ago, possible environmental contributors to autism are largely ignored and receive only a small fraction of the autism research dollars available. 

Even our understanding of autism diagnostic criteria are about to change again and for what reason?  The DSM5 does not hold out any serious hope of increasing our understanding of autism disorders, symptoms, causes or possible treatments.  The DSM5 will undoubtedly muddy the waters of autism research even further. Debates still rage over whether the astonishing increases in autism diagnoses of the last 15 years are real or whether they are caused by increased social awareness and ... the diagnostic definition changes of the 1994 DSM-IV.  NOW in Conor's 15th year post autism diagnosis yet another definition will be forced upon North Americans?  How can this possibly help autism research?  

Services have been obtained for autistic children in various parts of North America in the 15 Conor autism years.  Here in New Brunswick I joined with other parents fighting for early intervention, school and services for autistic adults.  We made significant gains in early intervention service delivery as recognized by Dr. David Celiberti of the Association for Science in Autism Treatment and in our schools.  In adult care nothing has changed as yet,  nothing at all. Here in New Brunswick, Canada, we still dump our severely autistic adults in hospitals, jails, hotels and foreign facilities rather than develop our own enhanced adult autism network.  Many others live in group homes with untrained staff. The gains we made in early ntervention and schools are being eroded and adult care has not been addressed at all.

If I sound gloomy I don't intend to be.  I will advocate for Conor as long as I am alive and I can only do so by  being honest.  His autism challenges are real and I will not betray him by pretending that his autism is a joy.  Conor himself is a tremendous joy and the proof is in the pictures you can find on this blog site and on my Facebook page which is open to public view.  See for yourself.  Conor's autism is no joy but he sure is. 

Tuesday, February 19, 2013

Conor's Happy 17 Birthday Smurfday

Conor is 17 today! It's his birthday Smurfday as we ordered a birthday cake at the local Superstore featuring the Smurfs, currently his favorite movie which we have recorded on our television DVR function.  (Dad has seen it a few times too, little disappointed Gargamel wasn't on the cake,  just kidding!).  The "cake" is actually made of 20 cupcakes with an icing layer across the top. Conor's birthday is also known as spoil Conor silly day in our house and he has picked out Greco pizza for supper.  

Monday, February 18, 2013

Ottawa Citizen's Bridge to Nowhere: Canada's Broken Adult Autism Care System

Long time members of the Autism Society New Brunswick, particularly those from the Fredericton area, will recognize in the picture above former NB'er Linda Murphy and her daughter Ashley who has severe autism and is now 19. They are featured in Autism's New Frontiers PART 2: ‘The bridge to nowhere'. A few years ago Linda and Ashley moved from New Brunswick to Ontario. The excellent Ottawa Citizen article looks at the "fractured" adult autism care system in Canada, although personally I think it might be a bit of a stretch to call it a system at all whether looked at nationally or provincially in Ontario (or New Brunswick). The harsh reality to date is that Canadians and our political leaders have shown little interest in providing a serious, modernized adult autism care system.

The harsh reality of Ontario's abysmal adult autism care system is as bad as it would have been had Linda and Ashley stayed here in New Brunswick. Linda has decided to keep Ashley in school until she "ages out" at 21 after which time there is little assistance available:

"Some families have complained that their loved ones are at risk of ending up in a homeless shelter or jail because there is nowhere for them to go, especially when they get aggressive or violent, says Ontario’s Ombudsman André Marin. His office, which has received a growing number of complaints in recent years, has launched a probe into why so many adults with developmental disabilities fail to get the services they need from the government. “We have heard heart-wrenching stories from aging or ill parents whose adult sons and daughters are a danger to themselves and others and need constant care that can’t be provided at home — but they have nowhere to turn,” Marin said last November in launching his investigation. “Some of these caregivers are on the brink of emotional and physical breakdown. We have investigated past cases where people with these severe disabilities have been sent to shelters and even jail.” 

The gaps in service, which exist to varying degrees across the country, raise profound questions about what level of care and support Canadians are willing to give adults on the spectrum, whose abilities and needs are wide-ranging. “Right now, this logic that it will fall on the families first and we’ll pick up the disaster later is causing all kinds of suffering that’s unnecessary,” says Herb Emery, a health economist at the University of Calgary who’s studying the issue. "

The gaps in service are very evident here in New Brunswick.  A group home system with staff lacking autism training is supplemented only by permanent transfer to psychiatric institutions in Campbellton and Saint John.  Neither the New Brunswick government nor its non elected partner the New Brunswick Community Living Association, which determines many of the NB government's social policies, want to establish an enhanced adult autism care network as proposed by NB autism expert Paul McDonnell.  

The McDonnell proposal would see a facility in Fredericton near the autism expertise of UNB, UNB-CEL and the Stan Cassidy center which could provide permanent long term care for those with severe autism needs and could also provide expert assistance to the community based group homes.  Money is only part of the problem.  NBACL and the NB Government prefer to simply ignore the real life suffering of those with severe autism who do not fit into their rigid  adherence to failed, non evidence based, community inclusion models. Rather then construct an actual place for severely autistic adults to live under expert care they prefer to abandon them to general hospitals, psychiatric hospitals and foreign facilities most notably the Spurwink facility in Maine.

Linda Murphy was among the parents who fought for early autism intervention and autism trained aides and teachers in New Brunswick schools while in New Brunswick.  Hopefully her advocacy for adult autism care in Ontario will help improve the lives of autistic adults like Ashley.  Meanwhile, here in New Brunswick we too will continue the fight.  Not because we want to but because we have no other choice. 

Good luck and best wishes to Linda and Ashley. 

Friday, February 15, 2013

Talking Autism In New Brunswick With NDP Leader Dominic Cardy

Together with New Brunswick's foremost autism expert, clinical psychologist and UNB Professor Emeritus (Psychology) Paul McDonnell,  I enjoyed a visit to NB NDP headquarters on Prospect Street in Fredericton this afternoon for a direct, candid and open minded discussion about autism services in New Brunswick with NDP leader Dominic Cardy and NB NDP Executive Director Amanda Francis.  We covered a lot of ground with Paul reviewing early intervention, school and adult care autism services along with the parent advocacy that led to those services being provided. (I chimed in on occasion).  

In fact everyone contributed to the discussion. It was refreshing to discuss autism issues without having to break through a fixed mindset.  Mr. Cardy's office had responded promptly to the February 7. 2013 Autism Society New Brunswick invitation to attend our AGM  and Ms Francis indicated Mr. Cardy would be pleased to meet with us.  With all the news breaking this week of the NDP role in the anti-patronage bill and former Liberal Minister Kelly Lamrock joining the NDP I was fully expecting a postponement of the meeting.  The meeting went ahead though and it was everything you could hope for in discussing a cause, in our case autism, with a political leader. 

Mr. Cardy also re-affirmed his commitment to attending the Autism Society New Brunswick meeting at UNB Fredericton, MacLaggan Hall  on March 23 beginning at 12:30.  

On behalf of ASNB I want to thank Mr. Cardy and Ms. Francis and say that we look forward to continuing the discussion!

The Damaging Impact Of Seizures On Individuals With Autism

Seizures and epilepsy are serious issues for persons with autism and their families as we learned first hand in our home on November 17, 2012 when Conor suffered a very serious seizure. Following is a publicity release issued in respect of Silently Seizing and author Caren Haines, RN (Haines also received input from Nancy Minshew MD) which I am pleased to publish on this site.  I encourage everyone to read this release and consider using any media or social media you can to further its distribution and awareness of seizure issues for persons with autism disorders.

The Damaging Impact Of Seizures On Individuals With Autism

Newark Valley, NY, February 15, 2013 – Many of us know someone whose family is dealing with autism; once considered rare, now 1 in 88 children in this country are diagnosed with an Autism Spectrum Disorder (ASD).

Silently Seizing:  Common, Unrecognized and Frequently Missed Seizures and Their Potentially Damaging Impact on Individuals With Autism Spectrum Disorders (AAPC Publishing) by Caren Haines, RN, and valuable input by Nancy Minshew, MD, deals with the overwhelming challenge for those living with silent seizures. Many are confronted by anger and falsely accused of disorderly conduct, indecent exposure and drug abuse; while some are even unfairly arrested because the bizarre actions exhibited during a seizure have led to frequent misdiagnosis, medical mismanagement and, in the worst case, commitment to a mental institution.

Because they are difficult to diagnose, or due to a lack of awareness and understanding, as many as 30% of all children and young adults with ASD may have undiagnosed seizure disorders. Silently Seizing is a breakthrough book that explores what most doctors won't tell you – that often the symptoms of autism are caused by seizures, undetectable with standard diagnostic tools.

At age 2, the author’s son was diagnosed with autism. By the time he was 12, his diagnosis didn't account for his uncontrollable aggression, the acrid smells that lingered in his mind and the odd voices that screamed at him from inside his head. By the time he was 18, his out-of-control behavior mirrored a mood disorder with psychotic features. Silently Seizing begins with a close-up look at this family's journey and examines a disorder that cannot always be identified in a clinical setting.

As a registered nurse, Caren Haines relied on her training to help her decipher her now 24-year-old autistic son’s perplexing behaviors. Based on knowledge gained from years of intensive research and information from top researchers in the field of autism, she is helping families become free from the debilitating symptoms of silent seizures and psychosis.

Haines’ says, “Intersecting at two medical subspecialties, neurology and psychiatry, the child who has autism and partial seizures is at a serious disadvantage. By inadvertently allowing children's brains to “silently seize,” we are robbing them of their ability to function normally. Untreated, these seizures can predispose children to develop behavioral disturbances, such as self-injury, aggression and psychosis, which are seen in many cases of autism. If they are treated early with anti-seizure medications, many children show amazing gains in expressive language and comprehension. More importantly, many children lose their diagnosis of autism.”

Backed by up-to-the-minute research, Silently Seizing: Common, Unrecognized and Frequently Missed Seizures and Their Potentially Damaging Impact on Individuals With Autism Spectrum Disorders is a must-read book that includes sections describing autism, the seizure-autism connection, tips for diagnosing and treating seizures, as well as how to better understand children's behavior. It acts as a virtual guide to help parents navigate through this complex and mystifying disease. For more information, please visit:

Caren Haines is also co-author of Georgia, The Flying Dog, a children’s book that explores the concept of unconditional love and acceptance of our differences.


Established in 1999, the mission of AAPC Publishing is to be the first source for practical solutions related to autism spectrum and related disorders. AAPC Publishing is an independent publisher, targeting professionals and parents alike. AAPC Publishing strives to offer publications at affordable prices so that important resources are available to anyone with an interest in the autism spectrum.


Caren Haines, AAS Nursing, R.N. - Presentation and Book Signing Event at the 2013 Southeastern “Across the Spectrum” Conference - Autism/Asperger Conference and Expo

When:  February 28th, 2013 - Ms. Haines' presentation is from 11:00 am – 12:15 pm; immediately following she will be at the AAPC booth signing books.

Where: Gwinnett Convention Center -
               6400 Sugarloaf Parkway
               Duluth, Georgia   30097

ADDITIONAL INFORMATION: Hosted by: Georgia Autism Conferences and Exceptional Ed Events.  Georgia Autism Conferences strives to meet the needs of the Georgia Autism community by providing quality seminars and conferences throughout the state on topics related to Autism Spectrum Disorders.

Wednesday, February 13, 2013

No Meaningful Inclusion, No Community Living for NB Youth and Adults With Severe Autism Challenges

                                              Resigchouche Regional Hospital Centre

As an Autism Society New Brunswick representative I attended a meeting held at the Restigouche Regional Hospital Centre a few years ago to participate in a meeting to review the operations of the RRHC and to vote on its future, specifically whether to continue to operate or to close. I voted to continue to operate the RRHC. There were autistic adults who had been living there for many years.  No alternative in New Brunswick then existed for these adults with severe autism challenges.  The vote was conducted and reluctantly agreed to by me, and all other stakeholders present, because no alternative accommodations existed in NB for the residents of the facility.  Today  no alternative has been developed despite representations made to government over and over and over again.

As the title to the above comment I made on this blog on January 25, 2012 indicates money is not necessarily an obstacle to construction of a modern, humane adult autism care network.  Money despite challenging economic times has been available for projects such as the Civic Centre for residents of Premier Alward's riding. Money has also been spent on sending autistic youth and adults out of New Brunswick to receive the care we could provide in New Brunswick if outdated, non evidence based models of community and inclusion did not dominate the thinking of our government leaders, educators and service providers. As former Conservative cabinet minister Tony Huntjens indicates in his comment on the above post between $300,000-$600,000 annually has been spent on just 1 or 2 persons living at Spurwink, money that could be used to build a network of adult autism facilities here in NB:

I totally agree with you Harold. When I was minister of FCS we had to use facilities in the State of Maine at an annual cost of $300,000 per person. I had planned on pursuing the initiative you speak of using the State of Maine model...this would keep the autistic person closer to home in familiar surroundings, it would create employment so that the $600,000 now spent in Maine could be used to pay for these services at home. As you know, my efforts were derailed and I had to resign as minister. These financial facts I speak of need to be brought to the attention of the present government...perhaps they will see the light.

Keep up the fight and I personally wish you the very best of luck.

Tony Huntjens, January 2012

Tony Huntjens was a cabinet minister during the Lord government years and showed himself to be  a true friend of New Brunswick's autism community as he remains to this day.  Although not a member of the legislature, or the current  government he has continued to be a supporter of children and adults with autism. I attended a meeting with a minister of the current administration on adult care over a year ago in which Mr. Huntjen advocated forcefully  for autistic adults in New Brunswick. His efforts, and those of everyone who attended the meeting were not met with any results by this current government which believes that all needs of autistic children and adults can be addressed by feel good cliches about community and inclusion.  His comments 13 months ago on this site are an accurate reflection of what took place almost a decade ago.  The adult autism care he described then remains largely unchanged today.  

Things were so bad then that an autistic boy was housed on the grounds of a youth correctional centre, a jail, before being sent out of the country to the Spurwink facility in Maine where the $600,000.00 annually that Mr. Huntjens spoke of was being spent.   Matters have not improved under the current Alward-NBACL government.    Things were bad then and ... they are not one bit better today.  

Social policies including  early intervention, education and adult residential care policies are now set largely by the New Brunswick Association for Community Living  which has extremely close ties to the current government.  Despite the wonderful sounding name NBACL turns its head the other way when autistic children are excluded from New Brunswick schools and autistic adults are sent to live on general and psychiatric hospital wards ... if they have anywhere to live at all. 

The Autism Society New Brunswick made representations annually to the Lord, Graham, and  the Alward government,  to develop a modern, humane autism residential care network as described by autism expert Paul McDonnell a Psychology Professor Emeritus and practicing clinical psychologist who was instrumental in the autism progress New Brunswick made in the pre-Alward era.  

Unfortunately the Alward government has not seen the light as Mr. Huntjens had hoped.  New Brunswick adults with autism and their families have no reasonable basis on which to believe that their needs will be met, or that their voices will even be heard (1a,b),  during the reign of the current administration.

For New Brunswick youth and adults with severe autism challenges inclusion and community living are simply cliches uttered incessantly by those who pretend to care about their well being. 


(1) (a) 

January 4 2012

Dear Honourable Premier, Honourable Ministers 
and Respected Recipients

Re: Adult Autism Care And Treatment - NB Continues To Fail Autistic Adults In Need  

I am the father of a 16 year old son with severe Autistic Disorder and "profound developmental" delays. He is now 6'1" with the strong, solid physique his father once had in younger days.  At some point in the future I will be too frail to provide the care he requires and ultimately will of course no longer be available at all to help him. I began my involvement in autism advocacy in New Brunswick approximately 13 years ago.  Along with other determined parents I fought hard, very hard, for early evidence based intervention for autistic preschoolers and for the means to deliver those interventions. I advocated strenuously for autism specific trained education assistants, teachers and resource teachers. Some success has been enjoyed because of the efforts of parents of autism in the area of preschool and school services. New Brunswick has even been cited as a model from which American authorities could learn by the Association for Science in Autism Treatment. The same can not be said, at all, when it comes to adult residential care and treatment 

I also advocated for  adjustments to the total inclusion education model in our schools.  My son's self inflicted bite marks on his hands and wrists declined and disappeared entirely once removed from the mainstream classroom where he was overstimulated, overwhelmed, frustrated and learning nothing because of his serious autism deficits. I have been a determined opponent of the excessive dominance in our schools and facilities of rigid, ideologically based inclusion and community models. This mindset discriminates against severely autistic persons by failing to accommodate their real needs.  Our children have, at times, been sacrifices to the vanity of a community movement which can not adjust to differing needs, experiences and expertise. I participated in regular disability committee meetings held by the Department of Education until they were disbanded, the MacKay review and the Ministerial Committe on Inclusive Education. Believe me or not but many teachers and teacher representatives have told me in confidence that they shared my aversion to the rigid inclusion model which has caused considerable suffering to some children and has disrupted the education of others unnecessarily. My son has been accommodated because of my advocacy and because educators who dealt directly with my son were conscientious, could see what he needed and acted in good faith to help him. I know that not all severely autistic children have been as fortunate.

Nowhere has the insistence on an inflexible and non evidence based inclusion model hurt autistic children and adults more though than in the area of  residential care and treatment as they move from childhood to adolescence and ultimately adulthood. What awaits is a model which includes a belief in "community" backed up by group homes with untrained, underpaid staffers at one end of a spectrum of care.  At the other end of that spectrum is the regional psychiatric care hospital in Campbellton. In between the two ends is a huge gap. What is need is at least one centrally located permanent residential care and treatment facility for severely autistic adults.  Such a facility could be modernized and based on existing models in the world. It could include the professional assistance needed to provide care for severely autistic adults in a setting designed to provide them with a decent life, with continuing education and recreation opportunities.  The facility should be based in Fredericton, not because I live here but because Fredericton is where our evidence based autism interventions and facilities began and grew.  It is centrally located and it has a naturalistic environment with many woodlands, trails, parks and outdoor areas together with indoor recreational and entertainment facilities. 

I realize the current economic realities in NB, in Canada and the world work against any consideration of the type of facility that is needed. But economic realities always weigh in and have done so over the last decade that I have been involved with trying to advocate for a reality based, evidence based residential facility for autistic adults in need of a permanent home when their parents age and pass on.  Ever present too, and just as big an obstacle, is the belief that citing "community" cliches will actually help those who are most in need of help. 

I have visited Centracare years ago with the father of a adult autistic son who resided there at the time. He told me of seeing his son dressed in a hospital "johnny shirt" in a room with a cement room and a liquid substance on the floor. I did not know whether to believe  him or not until we arrived and again found him in the same room in the same condition. At least one autistic youth and one adult have been sent to a facility in Maine at considerable financial expense and considerable emotional stress for families living on the other side of an international border.  I have had parents email me to tell me of their young adult autistic children hitting their head and having to wear self protective head gear at home while parents struggled to provide care. I was told of an autistic adult living on a general hospital ward for a time in Saint John. I am aware, as are we all, of the autistic youth who lived for a time on the grounds of the Miramichi youth correctional facility before being sent to the a Spurwink facility in Maine. 

In early intervention and in school services both Liberal and Conservative governments have been of some assistance, have helped to provide needed, evidence based services to some extent. I ask that the same spirit be applied to developing a modern, decent residential and treatment facility for severely challenged autistic adults in New Brunswick. Nothing has been done for years.  We have failed New Brunswick's severely challenged autistic adults. Community rhetoric has not helped.  Autistic adults need a place to live.  My son will need a place to live with access to professional autism care and autism trained staff, a place with educational and recreational dimensions to provide a decent life for him and others like him.

Please advise whether your government is considering helping autistic adults and is working on a modern, reality based model.  If that is not in the works, please say so straight up.


Harold L Doherty, 
Conor's Dad
Fredericton (Nashwaaksis)

Dubé, Hon. Madeleine (DH/MS) 
to me

On behalf of Minister Dubé, I acknowledge receipt of your email.  Please be assured that it will be brought to her attention. 

Thank you for taking the time to write to the Minister. 


Lynda Godbout
Executive Secretary/Secrétaire exécutive
Minister's Cabinet/Cabinet de la ministre
Minister of Health/Ministre de santé
Tel: (506) 457-4800
Fax: (506)453-5442

Monday, February 11, 2013

UNDERdiagnosis of Autism Spectrum Disorders in Individuals with Intellectual Disabilities

A study presented at the IMFAR 2012 conference this spring in Toronto, Underdiagnosis of Autism Spectrum Disorders in Individuals with Intellectual Disabilies, seems to provide evidence contradicting the widely propagated assertion that the DSM-IV era has seen autism incorrectly diagnosed as a substitute  diagnosis in many cases of intellectual disability.  Roeyrs and Thys actually conclude that autism is UNDER diagnosed in a large study of persons with intellectual disability.  

If the study results are confirmed it seems likely  the harmful impact of the express, and intentional,  targeting for exclusion of severe intellectually disabled from the DSM5 autism spectrum disorder will be increased to the detriment of those most severely affected by intellectual disability and autism symptoms.  The missing of co-occurring autism disorder in persons with intellectual disabilities, as the authors indicate, could have serious repercussions for their care and treatment.  

2012 International Meeting for Autism Research

Underdiagnosis of Autism Spectrum Disorders in Individuals with Intellectual Disabilities

Thursday, May 17, 2012
Sheraton Hall (Sheraton Centre Toronto)
3:00 PM

H. Roeyers and M. Thys, Department of Experimental Clinical and Health Psychology, Ghent University, Ghent, Belgium
Background: Only a limited number of studies examined the prevalence of autism spectrum disorders (ASD) within the population with intellectual disabilities (ID) and even less studies tried to estimate the proportion of missed diagnoses of ASD in individuals with ID. It is however of great importance that the co-occurrence of ASD is recognized with a view to improving the quality of life of individuals with ASD and their social environment.

Objectives: The first goal of this study was to estimate the prevalence of ASD in a very large sample of individuals with ID. A second and equally important goal was to identify the proportion of overlooked diagnoses in various settings for individuals with ID.

Methods: The sample comprised 2798 individuals with ID and 322 individuals with borderline intellectual functioning from the 5 provinces of Flanders, the Dutch-speaking part of Belgium. The mean age was 25.6 years (SD=16.42), ranging from 1 tot 81 years. 52% of the sample was older that 18. Subjects were screened with the Scale of Pervasive Developmental Disorder in Mentally Retarded persons – Revision, a screening instrument with excellent sensitivity and specificity (Kraijer & de Bildt, 2005).

Results: 633 children and adults were classified as having ASD. This is 21.1% of our sample. When the subgroup with borderline intellectual functioning was excluded, the prevalence rate increased to 22.2%. The male-female ratio was 2:1. Occurrence of ASD was higher in subgroups with more severe forms of ID. 40% of the individuals with an ASD classification had no official diagnosis previously and another 22% was only suspected to have ASD. The proportion of supposedly missed diagnoses was significantly higher in females than in males. ASD was also significantly more often overlooked in adults compared to children. In addition, diagnoses were more likely to be missed in case of an associated genetic disorder such as Fragile X or Down syndrome, a comorbid psychiatric disorder or a severe visual impairment.

Conclusions: This is, to our knowledge, the largest sample of individuals with ID that was ever screened for ASD. Our study confirms that a substantial subgroup screens positive for ASD and that the diagnosis is often missed. Late diagnosis, or the failure to diagnose at all, may have unfavorable and long-standing effects for those affected and their families. For professionals in facilities and schools for individuals with ID it would seem important to bear the possibility of co-occuring ASD in mind. The recognition of ASD could lead to a better understanding of the overall problems of the clients and to more appropriate care and treatment.

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.


Thursday, February 07, 2013

Autism Society New Brunswick Invitation to Premier Alward, Ministers, Opposition Leaders to Attend ASNB AGM

February 7, 2013

Dear Honourable Premier Alward, 
Honourable Ministers, 
Respected Leaders of the Liberal, NDP and Green Parties of New Brunswick

You are all respectfully invited to attend the 2013 annual meeting of the Autism Society New Brunswick scheduled for March 23, 2012 commencing at 12:30 at MacLaggan Hall, UNB Fredericton.  The meeting will be open to anyone in New Brunswick affected by or with an interest in autism spectrum disorders.

The Centers for Disease Control (CDC) in the United States currently estimates that 1 in 88 persons will be diagnosed with an autism spectrum disorder (ASD).  The primary diagnostic features of autism as set out in the DSM and ICD diagnostic manuals indicate three primary concerns of deficits in  social, communication and restricted, repetitive and stereotyped patterns of behavior, interests and activities. Serious features often found in conjunction with autism include intellectual disabilities, epilepsy and seizure activities, sensory issues and self injurious behaviours.

In our province the Autism Society New Brunswick and our parent members have been instrumental in advocating successfully for evidence based early intervention for children with autism disorders. We were actively involved in assisting in the creation of  the internationally recognized UNB-CEL Autism Intervention Treatment program.  Our advocacy prompted the UNB-CEL autism training of approximately 500 education aides and resource teachers. 

It was also the ASNB representation during the inclusive education reviews  of the Lord and Graham administrations (MacKay,Ministerial Committee) that helped ensure the emphasis in the PNB definition of inclusive education on a student focused, individualized,  evidence based approach to inclusive education.  We have further advocated for the maintenance of a range or continuum of learning and placement alternatives in providing inclusive education; consistent with principles enunciated in Canadian case law such as the recent Moore decision of the Supreme Court of Canada and by credible autism authorities such as the TEACCH Autism Program at the University of North Carolina. 

ASNB and our representatives have also advocated persistently, albeit with very limited results, for systemic improvements in adult services.  One key area that has repeatedly been brought to the attention of government, and for the most part ignored,  is the need for an enhanced network of residential care and treatment  for New Brunswick adults with autism as described by respected New Brunswick autism expert Paul McDonnell.  

The adult care issues are of grave concern and have not been seriously addressed in NB at all.  There are also serious concerns among parents about a perceived regression in provision of early autism intervention with valuable early intervention time being lost needlessly by bureaucratic and service provider procedures. In our schools the quality and integrity of the UNB-CEL autism training has been replaced by an in house autism training model which the ASNB objected to strenuously over many years.  Pressures are continually being exerted to place all students with autism disorders in regular classroom settings contrary to the legal and professional requirements noted above for a continuum or range of education settings and service delivery based on the needs of the individual students.

The issues articulated are  provided in an attempt at candid, courteous discussion of issues that are of fundamental importance to our ASNB members and persons affected by autism. They are provided to avoid surprise and to allow any respected invitees who choose to attend to come prepared for discussion without fear of being "bushwacked".   This invitation will itself be placed in regular and social media consistent with ASNB practice of transparent, arm lengths and public approach to autism advocacy that has worked so well in dealing with previous administrations. 

if you choose to attend you will be welcomed on behalf of the  1 in 88 persons in New Brunswick and their families. Kindly reply as soon as possible  to this email if you wish to attend so that preparations can be made to accommodate any needs, requirements or concerns you might have in attending. 

Harold L Doherty
Acting President (ASNB, 2012 AGM)
Autism Society New Brunswick

cc.  ASNB, media  

Saturday, February 02, 2013

Autism Society New Brunswick Meeting March 23 MacLaggan Hall UNB Fredericton

Autism Society New Brunswick
 Annual General Meeting
March 23, 2013, 12:30 pm
MacLaggan Hall, UNB Fredericton
Room 53

Anyone with an interest in, or affected by, autism in New Brunswick is invited to attend the annual general meeting of the Autism Society New Brunswick.  The meeting is being held at MacLaggan Hall, UNB Fredericton, Room 53 beginning at 12:30 pm. 

If you are interested in attending please indicate at your earliest convenient opportunity by emailing me at

Look forward to seeing you on March 23!

Harold L Doherty
Acting President, ASNB

MacLaggan Hall, picture above is located in the center of the UNB map below on Dineen Dr.   Parking is available at the rear of the building off of Windsor Street.  HLD.