Autism, Politics and the Return of the Run Jump Fly Boy

I have been engaged in autism advocacy during the recent Canadian federal election.  I do so at the federal level for the sole purpose of trying to ensure that all Canadians with serious autism disorders have access to Applied Behavior Analysis for treatment of their core autism symptoms.  

I have advocated for over 15 years with other parents and with politicians like the late Fredericton MP Andy Scott who with Nova Scotia MP Peter Stoffer did manage to put autism on the Canadian political map with their joint private members' motion.  The motion set out some directions for a federal National Autism Strategy, directions which have been totally ignored by the current Harper Conservative government and by their pet autism charity Autism Canada which has never contributed to the struggle by parents from BC to Atlantic Canada who fought for, and continue to fight for Medicare coverage of evidence based Applied Behaviour Analysis for those with autism disorders. Watching the Harper Conservatives and their charity Autism Canada continue to ignore the only science based autism treatment for autism can be discouraging but not defeating.

As long as I can have daily adventures with my son Conor, now 19, I will never quit, I will never stop fighting for the right things to be done to actually help people who actually suffer from autism disorders and related conditions.  Conor has had some serious health issues in recent years with the full blooming of his seizure issues and dangerous adverse reactions to some seizure meds.  Today though as we walked Fredericton's North Riverfront Trail that we have walked so often I saw something I hadn't seen in a while ... the Run Jump Fly Boy was back.  He flew down the trail jumping into the air, both feet leaving the ground and enjoying life to the max.  Then he sat on a bench with Dad for a few minutes soaking in the fresh fall air.  And it made his old Dad and grizzled autism advocate feel good too ... very, very good and more determined then ever to continue fighting for meaningful, evidence based treatment for all persons suffering from autism disorders and related conditions.

REMINDER: Autism Society New Brunswick Meeting This Saturday 1:00 Room 303 Tilley Hall UNB Fredericton

REMINDER of ASNB meeting THIS Saturday At 1 PM.

 ASNB family ADVOCACY is responsible for the early intervention program recognized as an evidence based North American model.

Our efforts also led to several hundred autism trained TA's in the school system and for keeping the Stan Cassidy autism team operating after it had been closed.

We did these things without public funding, without paying ourselves salaries.

We operated totally arms length from government and we were and are transparent.

Join us Saturday as we continue the fight for ADULT autism services, treatment and care for those on all points on the autism spectrum. See you there!!!

Autism Society NB Meeting This May, Still Focused On Evidence and Results, Still Operating As An Independent, Informed Voice for Autism Services in NB

If you are the parent of an autistic child receiving early evidence based autism intervention at one of the government recognized autism intervention centres you are able to do so because of the advocacy of the Autism Society New Brunswick.  

If your sons and daughters in NB schools have access to education aides or resource teachers with autism training they are receiving that training as a result of advocacy by the ASNB.   

If your child is receiving care at the Stan Cassidy Centre Autism program you are doing so because the parents of the Autism Society NB publicly and successfully advocated to reverse the previously announced decision to close that program.

We HAVE NOT achieved success, for a variety of reasons, in seeing the development of a rational adult autism care network but we are not and will not give up.  We are still pressing forward on adult care. The principles discussed by ASNB members over the past 12 years with respect to adult autism care were reflected in the  2010 CBC interview with Paul McDonnell, clinical psychologist, Professor Emeritus (Psychology) and the source of much of the knowledge and information forming the evidence basis on which ASNB has operated.  

The adult care principles discussed and developed by ASNB over the past 12 years are also the basis of the recently completed adult autism care proposal which has been submitted to government and to several  MLA's.   ANYONE in NB interested in a rational adult care system to replace the band aid approach which plagues adult autism care and treatment  in NB may obtain a copy by simple request to AutismRealityNB@gmail.com.

Our mode of operation has puzzled some including some political leaders. ASNB in the last 12 years has not acted as a registered charity and did not earn income for the organization or to pay salaries.  We donated our time and efforts without monetary compensation and particularly without receiving ANY MONEY from the Province of NB for our own purposes.  In this manner we remained independent from government, free of the conflict of interest which necessarily accompanies government payment of monies.

Autism Society New Brunswick meeting Saturday March 23, 2013 

L: Education and Early Childhood Development Minister Jody Carr

R: Autism Society New Brunswick Acting President Harold Doherty

We HAVE periodically met in person including a March 23, 2013 meeting attended by former Education Minister Jody Carr at UNB.  For the most part though we have operated  efficiently via the modern means of communication known as the internet.  A dozen years ago we communicated and achieved considerable results by using email and Yahoo News groups.  At least one of those Yahoo News Groups still exists as a record of discussions among members of ASNB over the years.   The Autism Society NB Facebook page has operated for several years with membership open to anyone in NB with an interest in autism.

ASNB has always operated on an evidence based approach.  We were and are focused on and will always advocate for meaningful results not feel good cliches.  This has been and remains the Autism Society NB.  

We  have been and are an evidence based, focused and results oriented,  independent voice for autism services in NB  and we are planning to meet in person in May for those who are less comfortable with internet communications. We will announce the particulars as soon as possible.

Respectfully,

Harold Doherty

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

I Am Hoping for NDP Voices in the NB Legislature to Help Families Advocate for An Adult Autism Care Facility

The picture above is from Conor's 2nd Birthday on February 2,  1998.  The next day we received his autism disorder diagnosis, described initially as Pervasive Developmental Disorder Not Otherwise Specified,  six months after various tests and six months after requesting medical attention because we did not understand his lack of development and we were concerned.  Shortly thereafter as his deficits became more obvious and pronounced the diagnois was changed to Autistic Disorder now part of the DSM-5 Autism Spectrum Disorder. An age 2 diagnosis was rare in those days.

Conor at 3.  Over the first year, post autism diagnosis, we had attended at the  very limited information sessions provided to families with autistic children by the Province of New Brunswick. We had also heard much rhetoric about just accepting your child as he is, accepting his autism, be happy.  Then I attended a parents group meeting (in the pre government funded Autism Community centre days)  At the meeting I found myself surprised to be lectured directly and sternly, by Dawn Bowie,  the mother of an autistic child who also happened to be a registered nurse). From those meetings and connections with other concerned parents in Moncton, Miramichi, Oromocto, Fredericton, and a Saint John family (Heather and Don Chamberlain) began a parent advocacy movement that resulted in an April 1, 2003 announcement of funding for unspecified autism services by then Health Minister Elvy Robichaud. By the end of the Lord government's term the UNB-CEL autism program had been established with early intervention centres. Autism training began for teacher aides and resource teachers and under the Graham government more were trained.  An ill considered decision to close the Stan Cassidy tertiary care team who worked with autistic children under the age of 16 was reversed ... again as a result of advocacy led by parents. 

Conor, still our happy boy, is now 18 and will require decent adult autism care 

 for the rest of his life once his parents grow old and pass  on. 

I am asking in this post for all families with autistic children and adults to consider voting tomorrow for the NDP.  I make this request in order to encourage you to vote for MLA's in the legislature who are committed to advocating for a badly needed adult autism care facility.  Beginning in 1999 parents advocated with some success for early autism intervention and autism trained teacher aides and resource teachers.  Progress in adult autism care has been virtually non existent with autistic adults shipped out of province in some cases, to the Regional Psychiatric Hospital in Campbellton and some have resided for periods of time at least on general hospital wards.  

The fight for adult autism care in NB will not become any easier with the election of one of the 2 parties, Red or Blue, that have governed NB during my entire life and during the last 15 years of autism advocacy.  But at least if some NDP voices are elected, unlike the Blues and Reds,  we will have voices from a party that has publicly committed in its election platform to an adult autism facility.   

If you are voting tomorrow, I respectfully ask you to  please consider voting NDP. 

Parent Advocacy, Autism Services and the Lack of Decent Adult Autism Care in New Brunswick

In Canada October is our official Autism Awareness month.  

That is not as widely known as it might be for a number of reasons including the fact that we live next door to the large, influential United States where April is the official Autism Awareness month. A second reason is that we do not have a meaningful National Autism Strategy.  Here in Canada our federal government has taken a small and narrow approach to autism.  Our federal government plays no meaningful role in providing autism services across Canada and in fact plays no meaningful role in providing reliable evidence based information about autism.  For that reliable autism information parents and autism advocates have had to look to the United States for guidance. It is quite understandable in those circumstances if Canadians assume that April is also autism awareness month here in Canada. In some provinces though, particularly British Columbia and New Brunswick strong parent advocacy did lead to creation of evidence based autism services being available. 

Here in New Brunswick we live in one of Canada's smaller, less affluent provinces.  Nonetheless we were, for a while at least, a Canadian leader in provision of evidence based early autism intervention, thanks to strong parent advocacy and sound guidance about evidence based autism interventions from UNB Professor Emeritus (Psychology) and clinical psychologist Dr. Paul McDonnell. With the information base to which Paul McDonnell directed us, parents were able through determination and strong advocacy, to prompt our governments, both Conservative and Liberal,  to provide evidence based early intervention services, in both English and French at a level that was recognized by the Association for Science in Autism Treatment:

"ASAT Responds to Canadian CBC's "N.B. Can Be a Leader in Autism Services"

Saturday, October 23, 2010

I read with great interest your recent article about the state of services in New Brunswick (“N.B. Can Be a Leader in Autism Services," September 14, 2010). I do beg to differ about the title of the piece. New Brunswick is already a leader. To have amassed 800 trained agents of change in six years is nothing short of incredible and inspiring, particularly given the diversity of your province with respect to geography and language. Other Canadian provinces can look to New Brunswick for an exemplary model of how things could and should be for children with autism and their families.

There is a misconception that services in the United States are superior to that of our neighbors to the north. I can assure you that children with autism in rural areas and in economically depressed areas of the U.S. do not always access state of the art, science-based treatment such as those based on applied behavior analysis. In many cases throughout the US, children with autism receive poor quality behavior analytic services that may be lessened if providers were able to access more intensive training and networking opportunities similar to what is being offered in your province. Part of the Association for Science in Autism Treatment (ASAT)'s mission is to help close that gap through information dissemination, and we are keenly interested in the efforts of leaders like yourself developing, implementing, and evaluating systems.

And like other true leaders, you have looked critically at your accomplishments with an eye toward making every year of service delivery better than the previous year. We applaud your recognition that treatment parameters such as intensity need to be tailored to each child to maximize gains. When resources are scarce, this individualization can be an arduous task, but nonetheless critically important. Equally important is the need to communicate to government officials, tax payers and other stakeholders that immense financial savings are attached to doing right by our children when they are young.

It is unfortunate that funding for parent training is not more abundant. Optimal outcomes for children with autism are predicated on the support of educated, informed and skillful parents. Promoting carryover, ensuring consistency, and enhancing skill development across all environments are crucial roles for parents, but parents require support and training to assume these crucial roles. Your stated concerns and insights about the dearth of services for adults are much appreciated, and reflect the challenges that we have here in the U.S as well.

Families of children with autism in New Brunswick are blessed. Keep fighting the good fight.

David Celiberti, Ph.D., BCBA-D, President

Association for Science in Autism Treatment"

The most advocacy focused organisation in New Brunswick was group, of which I was a founding member, called FACE ... Family Autism Center for Education. Despite the reference to Education in the title FACE was primarily an advocacy organization that. because of its advocacy focus, did not enjoy official charitable status. We met in my law office board room on King Street in Fredericton and we lobbied persistently online, through the "regular, mainstream" media such as CBC, Rogers Television, The Daily Gleaner and the Telegraph Journal.  Eventually we were able to convince more reluctant members of the provincial Autism Society to join our advocacy efforts and we returned to the Autism Society New Brunswick. Together parents stood in front of the Legislature and other provincial government buildings holding signs and making our voices heard.  

Ultimately we received conscientious, serious responses from high political leadership in the Conservative Bernard Lord government and subsequently in the Liberal Shawn Graham government. With responsive leadership from our provincial cabinets we were able, for a considerable period of time, to leap frog over the more bureaucratically inclined senior civil servants who wanted to go slow who lacked the understanding of the need for urgency in helping our autistic children. 

As noted by ASAT's David Celiberti we were able to establish a strong early intervention autism service base here in New Brunswick.  We were also successful in having our governments begin providing strong autism training to Teachers' Aides and Resource Teachers to assist autistic children in our schools.  That fight was somewhat more difficult.  "Educators" did not really see it as the place of parents to play a significant role in determining what services are available in NB schools.  Again, we appealed to our political leadership and with solid information from local experts like Paul McDonnell and US sources like ASAT,  the Office of the US Surgeon General and state autism reports from Maine, New York and California we were successful. We also used the tools at our disposal including appeals under our provincial Education Act and Human Rights Act to help our autistic children receive autism trained aides in our schools.

Strong parent advocates in British Columbia played a significant role in providing tools for New Brunswick parents to use in exerting political pressure here. The Hewko BC Supreme Court decision and the Auton BC Supreme Court  and Auton BC Appeal Court  decisions (until the latter was reversed by the Supreme Court of Canada) provided valuable tools to assist us in our advocacy here in NB.  Ontario parents fighting for autism education services in the Deskin-Wynberg litigation were also of great assistance to our efforts here in NB. 

New Brunswick parent advocacy was very successful in establishing the early intervention and school autism services here in NB.  We intentionally started out by focusing on early intervention services and then moved on to the school years.  Unfortunately the success we enjoyed in advocating for our children in early intervention and school services has not been repeated in the adult years. We are as we have been for many, many years largely bereft of any meaningful adult autism care residential care and treatment services.  Our more severely impaired autistic adults will, if they are lucky, live in group homes staffed by people with no autism specific training and little if any professional oversight. Those, like my son, who are severely autistic AND developmentally challenged will probably have to live in hospital facilities, again, if they are lucky.  New Brunswick has for many years ignored these serious needs of autistic adults although there are some signs of an awakening in the form of a pilot project involving the training of one service providers at one group home. 

We also have to continue the battle to make our civil servant decision makers understand that some people with autism have other challenges which present themselves which can provide very serious risks to the safety of autistic adults. Many with autism and intellectual disability also suffer from seizures, some of which are life threatening.  Some on the autism spectrum, including some with higher functioning levels also suffer from serious challenges like depression, challenges which may be made very difficult to address because of their autism disorders. 

In Autism Awareness Month in Canada we still lack a meaningful National Autism Strategy.  Here in New Brunswick our successes at early intervention are still recognized as in they were by ASAT in 2010 and by a mother who recently returned to NB from Ontario to open a Bistro in her hometown of Woodstock and because New Brunswick offered better autism services for her autistic son than those that were available in Ontario:

"Opening a restaurant, however, was not the motivation to bring McQuade back to Carleton County. She has a four-year-old son with autism, and she says the treatment in New Brunswick is more accessible and better than what was available to her in Ontario."

A new bistro in the square, Telegraph Journal, September 5, 2013

Many New Brunswick parents whose children are currently receiving early autism intervention services or school autism services may be unaware that it was parent advocacy that led to the creation of these services.  We have to be vigilant to maintain and expand these services at the early and school years. And we absolutely have to work to bring to the attention of government the need for a full range of autism residential care services and for the end of policies of excluding adults with Aspergers/autism from other mental health services.

Autism`s 40% With Intellectual Disability? Auti$m $peak$ Doesn't See YOU, Doesn't Speak For YOU!

Autism Speaks has done much to create publicity around the word autism, the color blue, puzzle pieces and ... some very talented, high functioning individuals with autism diagnoses like Alex Plank and J. E. Robison.  In terms of its public statements and presentations though it does little to nothing to  raise awareness about one very basic fact: autism has a very close relationship with intellectual disability to the extent that 40% of persons with autism spectrum diagnoses (DSM-IV) also have intellectual disability. 

Prior to the DSM-IV and prior to the addition of PDD-NOS and Aspergers persons with intellectual disability constituted the vast majority of persons with autistic disorder.  Autism Speaks has reluctantly acknowledged that 40% of persons with autism have intellectual disability but does not reflect their existence in their press releases.  Autism Speaks conflicted attitude toward those with autism and intellectual disability was illustrated vividly in the recent Drake and J. Cole lyrics uproar when Autism Speaks defended persons with autism but not those with autism and intellectual disability. Instead of criticizing the rappers for their derogatory reference  to persons as “autistic, retarded." Autism Speaks went further and argued that in fact persons with autism are very successful and talented. No mention was made in the Autism Speaks press release of the 40% of the autism spectrum who are intellectually disabled even though the words "mentally retarded." have been replaced by the words intellectually disabled.  

Autism Speaks chose not to stand up for the intellectually disabled members of the "àutism community" even though they were  expressly  maligned in the original lyrics:

Hip Hop Lyric Insults Autism Community

"Lyrics from the recently released song “Jodeci Freestyle” from hip hop artists Drake and J.Cole have many in the autism community up in arms. The song, which was released last month and is now getting airplay, contains the following lyric by J. Cole: “I’m artistic, you n----s is autistic, retarded." 

These lyrics are offensive and perpetuate negative stereotypes. There are many inspiring individuals with autism and other disabilities who have achieved great success across a variety of artforms, including music. We encourage J. Cole to recognize their talents and learn from the positive example they have set for all of us."

This is not the first time Autism Speaks has chosen to ignore the intellectually disabled 40% while promoting the very, very, very high functioning elite members of the autism spectrum like J. E. Robison and Alex Plank.  There is almost never any mention of the intellectually disabled in promotions and news releases by Autism Speaks or on their web site.  I have previously noted that Autism Speaks has only reluctantly acknowledged the existence of intellectual disability on the About Autism section of its web site burying mention of 40% with ID in the middle of the page, book ended by references to those with high IQs and abilities.

In the "rapper incident" AS went further than just ignoring those with autism and intellectual disability.  They implied that persons with autism, all persons with autism, are in fact talented, successful people.  They were ashamed to mention and defend the 40% with autism and Intellectual Disability.  The rappers have offered sincere apologies and taken steps to address the issue by changing the lyrics.  Rapper J.  Cole even acknowledged the existence of those with severe autism and their families.  By their actions Drake and J. Cole have shown themselves to be ahead, light years ahead of Autism Speaks in caring about ALL persons on the autism spectrum including the 40%  intellectually disabled.  

Conor's Autism Advocacy Awards

The primary front line autism service providers, regardless of where one lives, are parents.  In Canada at least parents have also been the first and most effective advocates for services for autistic children from BC to Ontario to New Brunswick to Newfoundland and all points between.  For most parents recognition of that fact is important only to prevent others with less understanding of the impacts of autism on our children from purporting to speak on their behalf when they do so contrary to our children's best interests. The only award most of us really need though are the hugs and smiles we receive from our children.  Following are some awards Conor has given to his Mom and Dad:

This picture above was taken during my recent 6 day hospitalization for a chest infection and asthma attack. Lights were harsh for picture taking and the cell phone camera was not great so the picture is blurred but speaks volumes. Conor missed his Dad and I missed him.  His visit cheered his old Dad considerably. Conor's hugs and smiles have added immeasurably to my enjoyment of life and helped me stay focused as an autism advocate on what counts most - helping my son and others with autism enjoy a fuller more rewarding life. Conor has not been skimpy in handing out awards to his Mom and Dad:

Education and Early Childhood Development Minister Jody Carr Opens a Dialogue with the Autism Society New Brunswick

L: Education and Early Childhood Development Minister Jody Carr

R: Autism Society New Brunswick Acting President Harold Doherty

The Autism Society New Brunswick meeting last Saturday March 23, 2013 was scheduled to be a regular meeting with election of a new Board of Directors and routine business.  That plan was changed, the election was adjourned, at my request, and after passage of a motion to that effect, and the routine business, for very good reason did not take place.  Instead ASNB took full advantage of the presence at our meeting of Education and Early Childhood Development Minister Jody Carr.  

Minister Carr had to adjust his schedule to attend and we only received confirmation he would be there the day before the meeting. The brief notice though did not reflect the nature of Minister Carr's attendance.  He was present for the entire meeting, he participated actively throughout, took notes and answered questions openly and directly.  In the 12+ years that I have been an active autism advocate we have had meetings with premiers and cabinet ministers in their offices but this was the first time  I know of that a cabinet minister actually came to one of our meetings.   

Education and Early Childhood Development Minister Jody Carr attended our meeting and to his credit was fully engaged.  Details of the meeting and discussions with the Minister will be published soon.  For today I would like to say thank you to Minister Carr for his presence and active participation at our meeting.  We look forward to future discussion with you,  and hopefully your colleagues, of matters affecting New Brunswick children and adults with autism.

New Brunswick Queen Elizabeth II Diamond Jubilee Medal Autism Advocate Recipients: Some Missing Names

I am not spurning the recognition nor arguing with the list of autism advocates recognized by the Autism Society Canada in partnership with the Governor General of Canada with Queen Elizabeth II Diamond Jubilee Medals.  I do not seek medals of any kind or financial reward for my autism advocacy, I seek better treatment, better services, better lives for my son and others for whom autism is a serious disorder that limits their daily functioning (DSM5) and limits their lives. But it is nice to be recommended by the Autism Society Canada which is also itself comprised of autism advocates.  I have to point out though a curious anomaly that occurred with the New Brunswick recipients ... three men and no women were named despite the important role of so many women in NB autism advocacy.  Also one person with Aspergers who contributed here in New Brunswick, and in Senator Munson's autism proceedings, was also left off the list. 

This might be just a question of numbers, with three allotted for NB,  but the reality is that in New Brunswick far more women than men have been involved in public autism advocacy and many of them have played very important roles in bringing New Brunswick international recognition for its autism services and programs (even though more progress is still needed). 

I am listing the following names of women in New Brunswick who I know advocated publicly and with great result.  More names could be added for sure but these are some that I know first hand are  deserving of recognition for their efforts.   Personally I did not seek the same goals as some of those listed  but they were all persistent, effective autism advocates.  In alphabetical order (by last name):

1. Lila Barry
2. Nancy Blanchette
3. Dawn Bowie
4. Heather Chamberlain
5. Karen Hammel
6. Marsha Manuel
7. Debi McDonald
8. Darlene Pugsley
9. Linda Richard
10. Charlotte Rocca
11. Shirley Smallwood
12. Pamela Weaver

In addition to the omission of women from NB's list of recognized autism advocates it would be just plain wrong to ignore the very important efforts and contribution of a person with Aspergers who overcome some of his own personal challenges to speak publicly in front of parents' meetings, sat on the ASNB Board of Directors and was recognized and quoted in Senator Munson's autism report Pay Now or Pay Later:

 (…) if you pay for it now, look at the return you will get on your investment. The people with autism will get out in the real world and get jobs, and that will stimulate the economy. Or you can pay later, which means they will go into group homes and it will cost the taxpayers a lot of money in the long run to keep them there.

Jason Oldford, Fredericton,
New Brunswick (12:32)

I am sure it was difficult for the Autism Society Canada people who had to pick the names of autism advocates across Canada to receive medals.    I simply want to highlight the many women, and Jason Oldford a gentleman "on the autism spectrum", who also made very large contributions to autism progress in New Brunswick. 

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.

 

Medicare for Autism Now: Shelley Davis Behavioural Consultant and Attorney

From the Medicare for Autism Now web site and the film Medicare's Orphans: A Film About the Fight to Get Healthcare for Children with Autism in Canada an interview with Shelley Davis:

Shelley Davis is a US based Behavioural Consultant who has consulted to BC families for the last 15 years. She is also a practicing attorney. She reviews two US laws – the IDEA (Individuals with Disabilities Education Act) and the ADA (Americans with Disabilities Act) and how determined parent advocacy attained both. She describes the stark contrast in approach and delivery of autism treatment between California and BC. In her experience the only reason for improvements in BC was the result of the work and advocacy done by the original FEAT of BC (Families for Early Autism Treatment) parents. However, in her view, we’re still at the very beginning of the process. We need to continue to work together and have high expectations because it so too easy for children with autism to be pushed aside.

A Real Canadian Autism Hero - Stefan Marinoiu

Stefan Marinoiu is not a federal or provincial political figure, or an entertainment celebrity of any kind talking endlessly about raising autism awareness without taking any action to help the 1 in 88 Canadians who suffer from autism disorders.  Stefan is a real Canadian autism hero.  He has made courageous efforts to have our federal government address Canada's autism crisis. 

Stefan has raised autism awareness without the benefit of political or media connections. He has not done so in order to obtain free travel to Banff or the UN or to augment a political career, he has done it to help his son, Simon,  and  others with autism disorders.  He has done it by twice putting his life at risk with a mid winter walk :autism" trek from Toronto to Ottawa and with a  hunger strike.  I was very pleased to meet Stefan and his wonderful family in Toronto.  Stefan did not confine his efforts to simply raising the awareness as happens with so many much less challenging efforts. Stefan actually advocated for  our federal government to get involved in a meaningful serious way to address Canada's autism crisis.   

Unfortunately the Stephen Harper-Mike Lake government does not want to acknowledge or deal with Canada's autism crisis and there will be no federal progress in Canada as long as the Harper version of the Conservative government holds majority control. Not a single member of our Harper Conservative government, not even those with family members affected by autism, have bothered to push for meaningful federal efforts to address Canada's autism crisis. I doubt though that Stefan will give up.  I will try to follow Stefan's example and continue efforts to advocate for meaningful efforts by our federal government to address Canada's autism crisis.  

Those of us who believe that our federal government should offer meaningful assistance to the 1 in 88 Canadians with an autism disorder have to look past the Harper era and look to NDP and/or Liberal governments to address Canada's national autism crisis.  We can't  give up in the face of Harper's indifference, we must keep fighting and refuse to give up.

The Aurora Horror and Michelle Dawson's Bizarre Anti Autism Advocacy Rhetoric

As an autism advocate in Canada I am very familiar with Michelle Dawson's angry rhetoric in which she attacks autism organizations advocating for autism treatment for autistic children. She has campaigned vigorously and persistently against provision in Canada of ABA services for autism disorders. With the recent horror in Colorado many people have, rightly in my opinion, criticized Joe Scarborough for his irresponsible linking, even if unintended, of autism disorders to the alleged perpetrator of the massacre. I was curious to see what different high profile autism commentators were saying on the issue and was startled, even given Ms Dawson's history of negative criticism of, largely parent driven, organizations seeking ABA treatment for their children, to read her comments at her QuickTopic discussion forum "The Misbehaviour of Behaviourists": 

I have never seen an autism organization, let alone "the most important" autism organizations, describe persons with autism as "natural born criminals". I have to assume that Ms Dawson has read a critique from somebody representing an autism advocacy group who has made such a statement but I never have. 

To many in the US and around the world it may seem of no importance that Michelle Dawson would make such a bizarre statement accusing the most important autism organizations of "promoting" autistics as just naturally violent, natural born criminals.  In Canada though some of our major institutions, including the CBC, the federal government of Stephen Harper and even the Supreme Court of Canada have given her a platform to speak on the premise that she is an "autistic" and that her views are relevant to important policy and legal decision making processes.  As Jonathan Mitchell, the Autism Gadfly, has pointed out in the past the views of Ms Dawson do not prevent her and her colleague Dr. Laurent Mottron from seeking, and receiving research funding from, one of "the most important autism organizations" ... Autism Speaks.  

I assume that Autism Speaks is not one of the organizations which Ms Dawson alleges to have promoted autistic persons as naturally born criminals or, with her lofty principles, she would presumably have refused to participate in Autism Speaks funded research.  Her bizarre angry rhetoric though calls into question her ability to conduct objective autism research and should disqualify her from providing counsel to future media, government and legal decision makers.

Medicare for Autism Now Interviews Harold Doherty

This is the video of my interview on Medicare for Autism Now! Since that interview a US Federal Court Judge has ordered Florida Medicaid to provide Medicaid coverage of ABA for autism. California has mandated insurers to provide ABA coverage for autism and the US federal government has done the same thing in respect of US federal government employees. Meanwhile back in Canada .... nothing ... or worse. 

The sham autism symposium held after a panic stricken Canadian government cancelled a real national autism symposium in order to screen out and prevent real autism activists from attending has resulted in absolutely no gains for autistic Canadians. Little progress has been made across Canada and in some provinces, like New Brunswick under the current administration, we are actually seeing gains slip away. 

We need a new generation of advocates to step forward and join the fight for autistic children and adults. We need YOU!

adults.

Autism Society NB Advocacy History: Saving The Stan Cassidy Centre Autism Team

It is difficult to say, as an outsider, what factors weigh most heavily in the minds of public decision makers when they make decisions which impact a community, especially a vulnerable community like children with tertiary level care requirements.  

In May 2005 it was announced that a very valuable resource was going to be closing in New Brunswick. There would be no new patients accepted for treatment by the Stan Cassidy Centre for Rehabilitation tertiary care autism team.  The announcement sent shock waves through most of New Brunswick's autism community, at least  outside Saint John where that city's CACI leader Debbie McDonald was interviewed on CBC radio and took the position that the closure of the Stan Cassidy Centre autism team was a good thing: 

"wow this is too hard to believe … but in some ways I think its kind of good that the Stan Cassidy is kind of toning down its autism um efforts and kind of focusing on what they do really well, which is rehab you know rehab care center for a … for a variety of issues"

In the rest of the province, from Moncton to Maugerville to Fredericton to Miramichi and to points in between the reaction was different. Under the leadership of the Autism Society of New Brunswick we voiced our outrage as parents of autistic children,  and, to their full credit, the decision makers listened and responded meaningfully. The Stan Cassidy Centre tertiary care autism team was brought back from death's door and is today a vitally important element in the delivery of New Brunswick's autism service.  The Centre's role is even more important as an autism resource now that the Province of New Brunswick, under the Alward-Carr-Porter government,  has walked away from the internationally recognized UNB-CEL Autism Intervention Training program as the training agency for early intervention workers and education aides and resource teachers working with autistic children and substituted in its place in house training with an inevitable loss of quality and integrity. 

The letters that follow are a small but significant sample of the Autism Society New Brunswick advocacy that was exerted in order to revive the Stan Cassidy Centre's tertiary care autism team.  It was the kind of effort that is required of parents today, all of us, dinosaurs and rookies alike, if we are to preserve NB's autism gains in early intervention and education and accomplish something in adult  autism residential care and treatment.  An adult residential treatment facility is needed in Fredericton near our province's autism expertise.  

We must revive the spirit that let to our initial gains to protect those gains to the extent possible and to protect the lives of our autistic children as they .... and we ... grow older.  Governments will often ignore autism problems unless parents speak up.  

We have done it before and we can do it again. 

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Dear Minister Robichaud: 

It has come to our attention that officials at the Stan Cassidy Centre for Rehabilitation have unilaterally decided to stop accepting referrals of pediatric patients with Autism Spectrum Disorder (ASD). Our understanding is that currently 20% of the pediatric referrals to Stan Cassidy are for those with ASD.Needless to say, if this decision is allowed to stand, it would be a devastating development for those families that rely on this centre for services such as speech and occupational therapy. These families would be left without services in some cases and forced to fend for themselves. It would also leave a hole in an already insufficient network of services for individuals with ASD.

We find it unacceptable that the Autism community was not consulted on this decision. We request that this decision be reversed until such time as we in the Autism Community have had an opportunity to make the case that this decision will unduly punish many individuals who rely on the treatment they receive at the Centre.

I would respectfully request an immediate meeting with members of the Autism Community including representatives from the Autism Society of New Brunswick to discuss this matter.

Your prompt attention to this issue would be greatly appreciated. 

Sincerely, 

Luigi Rocca

President

Autism Society of New Brunswick


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NB Telegraph-Journal | News - Other

As published on page B6 on July 13, 2005

Changes made at autism treatment centre panned

BY SHAWN BERRY

Telegraph-Journal

Parents of autistic children say they want a sit-down with the health

minister before any changes are made to the way autistic patients are

treated at Fredericton's Stan Cassidy Centre - New Brunswick's only

neurological rehab centre.

While the centre will continue to treat autism patients and those on its

waiting list, pediatricians were recently asked to stop referring new

patients.

"It baffles me that they can turn their heads and make these kinds of

decision without any consultation," says Luigi Rocca, president of the

Autism Society of New Brunswick.

But Dr. Ron Harris, administrative director of the Stan Cassidy Centre for

Rehabilitation, says the decision was necessary.

"The problem we face is one of sustainability of service," he said, adding

that pediatricians will be asked to continue making referrals.

The centre's children's program provides treatment for children with brain

and spinal injuries, degenerative muscular diseases, complex cerebral palsy

and complex developmental delays.

Up to now, Dr. Harris said, the centre's been lucky to find professionals

who have been able to combine their expertise in rehabilitation and learn

about autism.

But it's a situation he doesn't think will last.

Rehabilitation and treatment for autism patients require whole different

sets of skills and training, he said.

"We're going to go out there and recruit traditional replacements who have

the skills necessary to take a six-year-old with a brain injury and provide

service to them - the dilemma that's created is the services we've provided

for autism need to be re-developed."

Autism patients would be better served by "a team that's dedicated to the

kind of challenges autistic spectrum children present," he said.

It will take a year to get through the waiting list they already have, and

over the next 12 months, the centre will be working with the province, the

health authority and other major stakeholders to help develop a new system

of care for autistic children.

Still, Mr. Rocco worries about the decision.

"I'd like to see them reverse the decision and consult with our

representatives to talk about a plan. And if Stan Cassidy is not going to be

able to work, we need a plan before they cut off their services to autistic

children to make sure there is going to be a seamless transition."

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NB Telegraph-Journal | Readers' Forum

As published on page A7 on July 19, 2005

Centre's expertise valued by autistic community

The following letter was sent to Ron Harris, the director of the Stan Cassidy Centre in Fredericton:

I am a parent of a child on the Autistic Spectrum Disorder. I am deeply distressed to hear Stan Cassidy will no longer accept referrals or serve this population of children. I implore you to reconsider. Your decision to no longer provide services to our autistic children will have a profound and direct impact on the quality of life of our children.

For parents who were fortunate to have some intervention from the Stan Cassidy Pediatric Team, it meant the lives of their children improved to the point where they learned skills to cope within a school environment. It also gave parents the tools to teach skills, thus improving their children's lives at home.

Eliminating this service is a an absolute deal breaker.

Our older children for the most part have no service, and for policy makers within your organization to eliminate such an essential service will only serves to increase the burden on parents who are already stretched to the max.

Please recognize the consequences of your decision. It will be detrimental on the lives of autistic children and their families.

I would like to add, your pediatric team of professionals always gave me hope, encouragement and a direction that would improve the quality of life for my child. Without their guidance and direction, my child would not be where he is today.

LILA BARRY

Miramichi

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Daily Gleaner | Readers' Forum

As published on page C7 on July 19, 2005

Decision on autistic children doesn't add up

This is a copy of a letter sent to the Stan Cassidy Centre for Rehabilitation, pertaining to their change of mandate.

When first I heard of the decision to discontinue services to autistic children, I assumed, giving you the benefit of the doubt, that budgetary constraints had motivated this disastrous and hurtful determination.

Now that I have read your press release, in which you rationalize this decision on the basis that the skill sets required to provide services for autistic children are different than those required for typical treatment provided by the centre, I am stunned.

You are discontinuing a vitally important health and education service without ensuring that a replacement model of service delivery is available.

You offered the absurd rationale that these services are being discontinued because they are not typically provided, and that it will be difficult to find the people with the skills to provide the service.

As someone involved in the autism community, I know you have lost some of those skilled personnel, and some potential personnel, solely because of your decision to discontinue services to autistic persons.

Your excuse has become a self-fulfilling prophecy.

You attempt to reassure us that a new model will be developed to replace the existing model for delivery of the services previously provided by the centre.

After breaking trust with the autism community, you now want us to trust you when you assert that, somehow, a replacement model will be developed when you have no authority or means to provide such a model, other than the one which you are now discontinuing.

Your re-assurances ring as hollow as the excuse you offered for discontinuing these services.

Harold L. Doherty Fredericton

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NB Telegraph-Journal | Readers' Forum

As published on page A7 on July 18, 2005

Children with autism have been let down

It has been brought to my attention that services provided to autistic children by the Stan Cassidy Centre for Rehabilitation have been discontinued effective June 21, 2005. I have no knowledge of under what circumstances this decision was made, and am deeply shocked and dismayed.

To further my dismay, no one from the autistic community was consulted or made aware of this decision. Nine years ago, the Stan Cassidy Centre provided my autistic son the benefit of a multi-disciplinary team assessment, recommendations for his early intervention worker, and our family with the tools he needed for neurological rehabilitation in the form of intensive behavioural intervention. Stan Cassidy provided our son with direct therapy every three weeks until he reached the age to move into the Regional Health Authority Paediatric Rehab Team. Since he has been school age he is under the services of the Extra-Mural Program. Stan Cassidy was a vital link to proper interventions for the autistic population.

Stan Cassidy's multi-disciplinary tertiary team travelled the province, into the rural and remote areas providing assessments and recommendations to parents, schools, local paediatric rehab staff, etc. It is a vital and much needed service.

. The number of autistic children on the caseload at Stan Cassidy must have been high, which further perplexes me as to this decision. Dr. Harris is the executive director of Stan Cassidy, and has been involved in the autism community sitting on various committees. I know because I sit on these committees with Dr. Harris.

Again, children with autism have been let down, and a vital link in the chain of services broken. I would like to know what prompted this decision, and full disclosure made to the public and autism community.

DAWN BOWIE

Maugerville

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October 4 2005

Rehab centre to treat autistic kids 

STEPHEN MACGILLIVRAY PHOTO The Daily Gleaner

Children with autism will continue to be treated at the Stan Cassidy Centre for Rehabilitation. The board of directors of River Valley Health last week reversed a decision made earlier this year - at the administrative level - to stop treating children with autism who do not have a physical disability. The policy was to take effect in 2006. "We're elated," said Luigi Rocca, president of the Autism Society of New Brunswick. "We weren't at all happy with the original decision," he said.

Autism is a serious neurological disorder that typically appears during the first three years of life and has a profound effect on communication, social interaction and sensory integration. Autism, an incurable condition believed to be genetic in origin, affects about one in 500 individuals worldwide and is four times more common in boys than girls. Intense behavioural therapy has been found to help improve social and learning abilities, but experts say that for most autistic people, the condition continues to have some impact throughout life. The original decision to discontinue treatment of some children with autism was announced in May. At a recent meeting of more than 30 stakeholders from across the province, John McGarry, president and CEO of River Valley Health, apologized for the lack of dialogue that led up to that May announcement. 

The Stan Cassidy Centre for Rehabilitation is a tertiary care centre that provides services to children across the province in rehabilitation including speech language pathology and occupational therapy. Diane Morrison, senior vice-president of River Valley Health, said the centre has treated children with autism for many years and built up a level of expertise. "They were looking at their resources and how the resources were being utilized," she said about the initial decision. "Like most services there was more demand than you have the resources to meet." Children with autism represent about 20 per cent of the case load at the centre and required more than 20 per cent of resources to treat, she said. Morrison said it was initially thought that that children with autism could be better served elsewhere, particularly children without a tertiary rehabilitation requirement. If a child with autism did have an accompanying rehabilitation requirement they would still have been seen at the centre, she aid. Morrison said the meeting with stakeholders was positive. Following that meeting, and after further discussion within the organization and at the board table last week, the decision was made to continue the service, she said. 

The board motion to continue the service also called for the creation of a provincial working group to develop recommendations that will help ensure the Stan Cassidy Centre's autism services are sustainable and integrated into treatment across the province. Morrison said it was concerns about sustainability that prompted the May announcement. She said if the centre has just one speech language pathologist and one occupational therapist then the service is fragile. "We need to make sure that we can put in place plans for sustainable service," she said. "We are trying to take systemwide approach to this." Morrison declined to comment on whether the regional health authority would need additional funding from the province to make the autism service sustainable. "I don't want to presuppose the recommendations to come out of the working group," she said. Another meeting with stakeholders is planned for Oct. 14. 

Rocca said the dispute has highlighted the overall lack of resources allocated to autism in New Brunswick. The Stan Cassidy Centre for Rehabilitation does not have enough resources on its own to deal with autism, he said. Rocca said that stakeholders are pleased that when they complained they were taken seriously by officials at River Valley Health. He said they quickly reversed their decision and did not let it drag on for months. "We are starting a meaningful dialogue," said Rocca. "We will be involve in finding a solution. "We hope we get the same response from the provincial government."