A Positive Adult Autism Meeting with Social Development Minister Cathy Rogers

Minister of Social Development Cathy Rogers

Photo Source: NB Liberal Site 

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

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

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

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

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

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

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

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

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

We can do much, much better.

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

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

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

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

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

6 Years Later New Brunswick STILL Hasn't Addressed Adult Autism Care

Years have passed, governments have come and gone, but still the elected  members of 

the New Brunswick legislative assembly, despite international recognition for its parent

 advocacy driven early intervention and school autism services, have not seen fit to provide

 a systemic adult care autism system in New Brunswick.

The following blog commentary is a re-post, word for word, of a commentary I posted on May 5, 2009: Autistic Adult Care Improvements Long Overdue in New Brunswick.  Since then one group home has received some training for staff from UNB via the Department of Social development. Beyond that though there has been very little progress. As I said in concluding 6 years ago:"The time to help autistic adults is overdue though ... long overdue"  Today, over 6 years later, that statement is truer, and sadder, than ever:

I have said often on this blog that I am very happy with the progress that has been made here in New Brunswick in addressing the needs for evidence based autism treatment and in ensuring that autistic children receive a real, quality education. There are still problems that have to be addressed concerning preschool interventions for and education of autistic children but the distance we have traveled in the six years since then Health Minister Elvy Robichaud announced in the New Brunswick legislature that the government was committing funds specifically to autism is remarkable. That progress has, for the most part though, been confined to autistic children. New Brunswick's adults with autism disorders are badly in need of improvements to the barely existent residential care system for autistic adults.

Despite the substantial, and increasing, numbers of autistic adults and the complexity of the challenges they face New Brunswick does not have a residential care system dedicated specifically to adults. New Brunswick adults with autism who require residential care currently live in group homes with persons with other challenges. The problem with a general residential care system is that the staff working in such places will not generally have autism specific training. Nor are the locations necessarily appropriate for persons with autism disorders.

The good will of New Brunswick's political leadership, from either of the two parties that have governed, is no longer a matter of debate in the mind of this autism dad. The path to progress began under the Conservative government of Premier Bernard Lord and has taken some major leaps forward under the Liberal government of Premier Shawn Graham. It would be dishonest for me not to acknowledge what both leaders and their parties have done for New Brunswick's autistic children. Far from slamming these leaders and their parties I personally thank them for what they have done to help our children with autism spectrum disorders.

The story is different though when it comes to New Brunswick's autistic adults where all aspects of autistic life have been largely neglected or mishandled. While there are many pressing needs at the adult level the fact is we have long been in desperate need of an autism specific residential care system with properly trained personnel. Such a system would require autism specific residences in each region of the province with autism trained staff.

There is also a need for a central adult autism treatment and residential care facility in Fredericton. That need is proven by the fact that New Brunswick has sent its more severely affected autistic youths and adults to facilities outside the province including to Maine in the United States. We currently have autistic adults living in the psychiatric facility in Campbellton. I know of at least one instance in Saint John where an autistic adult was living on a hospital ward. In the past an autistic youth, charged with no crime, convicted of no crime, was housed on the grounds of a youth correctional facility in Miramichi while awaiting a spot at the Maine facility.

The talent reservoir for the establishment of an adult care centre already exists in Fredericton which is centrally located providing relatively convenient access compared to more remote locations. The Stan Cassidy Centre which provides pediatric tertiary care services is located in Fredericton on the grounds of the Chalmers Hospital. The main campus of the University of New Brunswick and its excellent, community involved, psychology centre is located in Fredericton. The UNB-CEL Autism Intervention Training program is located in Fredericton and has already indicated that it foresees no problem in developing a training program for adult care workers. All of these resources could be drawn on to supplement and support a modern, secure community based and autism specific residential care and treatment facility.

New Brunswick needs a publicly operated, not for profit, community based residential care system for autistic adults with facilities in each region and a central facility in Fredericton capable of providing in house residential care and treatment for the more severely autistic adults for whom the group homes have already been proven not to be a solution. The political leadership of this province has shown a conscience, substantial good will, and determination in helping autistic children. The time to help autistic adults is overdue though ... long overdue.

Dr. Glen Davies at Medicare for Autism Now! Rally June 27 2015

 Dr. Glenn Davies at the Medicare for Autism Now! rally June 27 2015 discusses evidence in support of behavioural intervention in treating autism, the lack of autism coverage under Canadian Medicare compared to the US Medicaid state to state mandate and the example of Wisconsin which is far ahead of all Canadian jurisdictions in providing treatment for autism.

Conor After Another Seizure

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Conor has been on  a good run for the previous 7-10 days and today was pretty much the same until 6:15 this evening when we heard a loud thump uupstairs.  His mom ran upstairs and screamed for help when she saw him convulsing on the floor with thick fluids oozing out of his mouth.  We had to keep him on his side with his head away from any corners or hard objects.   This was Conor's 4th grand mal seizure since Christmas. Conor's convulsions did not appear to last too long compared to some previous seizures ..  approximately 2 minutes.  Stilll 2 minutes of your son in convulsions is enough to scare you all over again. Conor also recovered quite well. The picture above was taken 45 minutes after the seizure and while he was still a bit groggy he was regaining alertness, speech and walking ability.  He is now sleeping soundly exhausted from another seizure.  I just checked and his head was on the side on his pillow  and he was breathing loudly but clearly.  Dad is starting to relax ... a little bit.

Medicare for Autism NOW! Campaign Kick Off Today!

Vancouver, BC – Today, the Medicare for autism Now! Society (“MFAN”), a non-partisan, not-for-profit, all volunteer organization, announced the launch of its nation-wide One in 68 campaign. “We will be holding a Campaign Kick-off this Saturday, June 27^th, at Douglas College, New Westminster, between 10:00 am and 2:00 pm,” said MFAN director and campaign manager, Dr. Sherri Brown, “It will outline the rationale for our initiative and lay-out our action and advocacy agenda leading to the federal election on October 19^th, less than four months away.”

The MFAN campaign takes its name from the fact that, currently in North America, one in 68 children are being diagnosed with Autism Spectrum Disorder (ASD). “There is a national epidemic of staggering proportion happening in Canada,” said MFAN director, Jean Lewis, “And, unlike the situation in the United States, our federal government has to date failed miserably to demonstrate long overdue leadership in addressing this major and growing national health care challenge.”

The One in 68 campaign will seek firm commitments from those who wish to hold elected office in Ottawa to vote in favour of necessary changes to the Canada Health Act so that persons living with ASD across our country will have science-based treatment for their core health need covered by Medicare. MFAN intends to focus its efforts on  a limited number of highly competitive electoral districts in various parts of Canada. In Metro Vancouver, these include: Burnaby North-Seymour, Coquitlam-Port Coquitlam, Delta, Surrey Centre, Surrey-Newton, Vancouver Centre and Vancouver Quadra.

  

For further information, contact Jean Lewis at 604-290-5737 or at jean.lewis@telus.net.

Canada Needs A REAL National Autism Strategy: Medicare for Autism NOW!

A Medicare for Autism Now! Rally was organized by FEAT-BC 

and held in Halifax, Nova Scotia on May 26, 2007.

Shawn Murphy,  Jim Munson,  Andy Scott

Former PEI MP Shawn Murhpy, New Brunswick Senator Jim Munson and the late Andy Scott a former Fredericton NB MP all advocated actively for a REAL National Autism Strategy with Shawn Murphy presenting an unsuccessful provvate member's Bill C-304,  to include autism treatment in medicare coverage and then Fredericton MP Andy Scott working with Nova Scotia MP Peter Stoffer to intoduce a National Autism Strategy bill which was passed and put the issue on the national agenda although no serious efforts have been made since then. Senator Munson chaired the Senate review of autism services in Canada and issued the Pay Now or Pay Later Report.

Nova Scotia MP Peter Stoffer co-sponsored a national autism bill with  NB MP Andy Scott.

Fredericton MP Andy Scott with Jean Lewis of FEAT-BC and Medicare for Autism NOW!.

 Jean was and IS a determined advocate for Medicare coverage of Autism treatment.

The photos above were all taken at the Medicare for Autism Now! rally at Halifax, May 26, 2007 organized by Jean Lewis and her fellow advocates from British Columbia.  Medicare for Autism Now! has remained active since then and remains one of the few legitimate national autism organizations in Canada.  Under the current government charities seeking to maintain their charitable status dare not address the need for a real National Autism Strategy for fear of losing their charity status. 

The fact is that the current government has accomplished nothing of substance in addressing national autism issues. In 2015 Canadians must still rely for information about the prevalence of autism disorders  on US figures.  There is no discussion of taking steps to ensure that children in each Canadian province.  There is very little discussion of media reports of families moving across Canada and to the US seeking autism treatment for their autistic children.

Autism Canada, the newly formed entity rising from the merger of the Autism Canada Foundation and Autism Society Canada, and Autism Speaks will not advocate for Medicare coverage of autism disorders.  They will not risk their charitable status and funding for their organizations. With a federal election looming it is time for serious national autism advocates to speak up and advocate for autism treatment coverage under Medicare. 

Stephen Harper and Mike Lake, a well known Conservative MP who appears to be a good guy and a great father of an autistic son have done nothing to help autistic children across Canada not one damn thing.  They both say, correctly, that health care is within provincial constitutional jurisdiction and they are right.  What they both ignore is the concept of co-operative federalism a concept which once existed in Canada and can be restored with a new government in place.

Medicare itself came into existence in this country via federal provincial cooperation and it can be amended to include autism treatment coverage by the same mode.  We need medicare for autism and we need it NOW!.

U of Washington news: Early Start Denver Model Intervention Improves Long-term Outcomes for Children with Autism

Early intervention improves long-term outcomes for children with autism 

 Early intervention for toddlers with autism spectrum disorder helps improve their intellectual ability and reduces autism symptoms years after originally getting treatment, a new study shows. The study is the first in more than 20 years to look at long-term outcomes after early intensive autism intervention.  The therapy began when children were 18 to 30 months of age and involved therapists and parents working with the toddlers in their homes for more than 15 hours each week for two years. The study will appear in the July issue of the Journal of the American Academy of Child and Adolescent Psychiatry and is published early online. 

 "When you intervene early in a child's life, you can make a big difference," said lead author Annette Estes, director of the University of Washington Autism Center. "We hope this translates to a higher quality of life for people with autism spectrum disorder." The therapy, known as the Early Start Denver Model, or ESDM for short, was designed to promote social and communication skills and learning. The research team found that two years after completing the intervention, children maintained gains in overall intellectual ability and language and showed new areas of progress in reduced autism symptoms. 

 This type of intervention has been shown to help children with autism, but it hadn't been shown to work with very young children over a longer timescale until now. These results make the case for autism-specific, one-on-one intervention to begin as soon as autism symptoms emerge, which for many children is before 30 months of age, Estes said. "This is really important," she said. "This is the kind of evidence that is needed to support effective intervention policies for children with autism, whether it's insurance coverage or state support for early autism intervention."

The researchers studied two groups of young children with autism – the first received community intervention as usual for two years, which was a mix of what was available in the community such as speech therapy and developmental preschool. The second group received ESDM, which addresses a comprehensive set of goals, is delivered one-on-one in the home, and incorporates parent coaching and parent-delivered intervention with the child. This approach is designed to enhance a child's motivation and follows each child's interests in playing with toys and engaging in fun activities, songs and basic daily routines. 

 After two years of intensive intervention, children in the ESDM group showed a significantly greater increase in IQ, adaptive functioning, communication and other measures than did the comparison group. "These findings indicate that children who had received the ESDM earlier in their lives continued to progress well with significantly less treatment than the comparison children received," said co-author Sally J. Rogers, a University of California, Davis professor of psychiatry and co-creator of the Early Start Denver Model intervention. It was surprising to researchers that two years after the early intervention ended, children who received the one-on-one care saw their autism symptoms reduce further, while children who had participated in community intervention had no overall reduction. This kind of treatment is important for the well-being of children with autism, but it's also a good idea economically, Estes added. "People who are better able to communicate, care for themselves and participate in the workforce at greater levels will need less financial support in their lives," she said. 

Other co-authors are Jeffrey Munson and Jessica Greenson with the UW Autism Center; Jamie Winter at Weill-Cornell Medical College; and Geraldine Dawson at Duke University. 

 This research was funded by the National Institutes of Health, the National Institute of Mental Health, the Autism Center of Excellence and the Autism Speaks foundation.

 ###

 For more information, contact Estes at estesa@uw.edu or 206-685-8059. Grant numbers: Autism Center of Excellence (MH81757); Autism Speaks foundation (1720).

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

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

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

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

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

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

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

Yes, Canada needs a REAL National Autism Strategy.

Autism, Seizures, Meltdown, Recovery:What a Difference a Day Makes

A day can make a big difference in my son's world of severe autism disorder, intellectual disability and epileptic seizures. Yesterday as I pulled up to his school to pick him up at the end of the day I could hear his voice inside the school and I knew things were not going well. He had been undergoing a very serious meltdown and I won't go into all the details. Today though, 24 hours later I pulled up to the same location and before I turned the corner I could see him at the basketball net. I stopped pulled my camera out and completed the turn. Conor was having fun outdoors, shooting the basketball and he was happy. And Dad is very happy as I type these words and post these pictures of my happy Conor.

Autism, Intellectual Disability and Seizures, When Together, Constitute ONE DISORDER

In the picture above, taken 3 years ago my son erupted in sudden self injurious behavior smashing himself violently in the head  after he had been on the swing at his old grade school, Nashwaaksis Memorial School; a split second after he had been very smiling and happy. I captured the image because it was a series of pictures taken with an "athletic" setting on my Canon camera to capture his until then joyful, smiling activity on the swing.  In the commentary below from my January 19, 2008 commentary on Facing Autism in New Brunswick, "Autism Disorder and Impulse Control" I commented on a variation of such sudden violent activity when moments of joyful interaction turn harmful for Mom or Dad.   Seven years after I speculated that my son's sudden impulses of violence towards himself or us were a reflection of seizure activities in his brain he has suffered a number of obvious tonic-clonic or gran mal seizures and he has been on a variety of seizure medications for almost 3 years.  

I also  know now that my belief in an Autism Knowledge Revolution was premature ... very, very premature.  Despite much higher rates of epileptic seizures among persons with autism than among the general population ....  as much as 30% compared to as little as 1% based on sources I have read ...  it still does not seemed to have dawned on the autism research community that "co-morbidity: which seems to imply "coincidence" to this humble layperson are aspects of one neurological disorder not two co-morbid disorders at least for those who have features of both and that the presence both of these alleged "co-morbidities" is even greater among those who, like my son, also suffer from intellectual disability.

This humble layperson strongly recommends and begs the "autism research community" to re-focus its priorities and shift away from trivial, puerile aspects of autism, stop calling it a condition, stop equating autistic with savant and start focusing more on finding causes, treatments and yes, cures, for the debilitating trifecta of autism, intellectual disability and epilepsy which this humble Dad would like to inform you is in fact ONE DISORDER not THREE separate co-morbid conditions.  I realize you can snicker and snort as professionals in the field and dismiss my comments but if you do so you are dismissing the 24/7 observations, over a period of 19+ years  of a person who loves the subject being studied and so pays close attention ... a parent. Get serious about autism, intellectual disability and epilepsy or quit pretending you care.

Facing Autism in New Brunswick

Autism News and Opinion

SATURDAY, JANUARY 19, 2008

Autism Disorder and Impulse Control

There are many puzzling features of autism. Hence the puzzle symbol for autism. Some of the mystery is being removed as our daily news brings us reports of new studies mapping the genetic and biological basis of autism. But even those areas are just beginning to be explored and while we are living through an Autism Knowledge Revolution there is much which remains unexplained and mysterious. Impulse control is one of those unexplained mysteries.

Even 10 years after Conor was diagnosed with Autism Disorder I am still startled by the impulses which suddenly seize Conor, and I mean seize literally, turning gentle acts of affection into potentially injurious and even dangerous acts of violence. Conor is very affectionate, tactile and observant. He likes to place his hands on either side of Dad's scruffy bearded face and study my face. But some times, suddenly, his hands dig painfully into my face. Sometimes he will grab my throat. Conor has also suddenly grabbed his mother by the hair and snapped her head and neck. Walking arm in arm downtown Fredericton, as we often do on weekends, he will occasionally grab by arm forcefully.

We have never thought for even a second that Conor intentionally tries to injure. I do not believe he has control during these instances. An impulse appears to overcome him suddenly and often is not preceded by any apparent triggering environmental stimuli. Conor simply appears physically seized by a powerful impulse.

I do not know what causes these seizure like impulses. I realize that my description of these events may sound like they are epileptic seizures and Conor's pediatrician may well confirm that lay person's guess. I know that there are many articles commenting on comorbidity of autism and epilepsy. Putting a new name on them may well be helpful in leading to other literature and understanding but I suspect that the behavior itself when it happens will always be startling and mysterious.

New Brunswick and Ontario Fail to Address Needs of Adults with Autism Disorders and their Families

Image from a CBC  British Columbia article in December 2014 Reporting on 

Ground Breaking of  Construction on the $28-million Pacific Autism Family Centre 

in Richmond, B.C..(Pacific Autism Family Centre)

British Columbia, Ontario and New Brunswick are 3 Canadian Provinces at different points on the adult autism care and treatment "spectrum".  British Columbia leads with the beginning of a center and network to provide adult autism resources for  BC autism adults and their families.  Ontario and New Brunswick, on the other hand, have no systemic, credible approach to the provision of adult autism treatment and residential care for the many with autism disorders who require treatment and permanent residential care.  

New Brunswick, which made substantial gains in early intervention and some gains in our schools, has spent money sending severely autistic adults out of province to Maine with some being housed permanently at the psychiatric hospital in Campbellton far from most families and some in general hospital wards.  In 2010 NB  Clinical Psychologist, Professor Emeritus and autism expert Paul McDonnell recommended a network system with a center to provide treatment for adults and permanent residential care for those with severe, 24/7 care requirements.  The center would provide professional expertise and oversight that could be accessed by autism facilities and assisted living arrangements in communities around the province. The McDonnell network was endorsed in the NDP platform in the 2014 election but has not gained ground in the consciousness of the NB government which continues to house autistic adults in hospitals in New Brunswick and ship our autistic adults elsewhere.

In Ontario CBC reports in  Autistic adult daughter leaves mom exhausted with nowhere to turn on the lack of support for an exhausted mother of an adult autistic daughter with nowhere to go when she soon ages out of the education system. Group homes have long waiting lists and services are prohibitively expensive.  The problem, as reported by CBC, is prevalent across Canada as governments have failed to address the consequences of the "close the institutions" movement that did result in closing institutions with no adequate replacements:

"Groups that advocate for the disabled said the entire country was unprepared for the increasing number of disabled adults needing community care, since institutions closed years ago.

They told Go Public that governments did not take into account the stress that closing institutions would create on working family members forced to take over.

"It's not sustainable. And so we need a new social contract on this. Already … 25 per cent of Canadians are now providing care to a family member or close friend," said Michael Bach, executive vice-president of the Canadian Association for Community Living, citing federal statistics."

In terms of actual gains New Brunswick, despite early autism success and the demonstrated need for autism services, has operated with a mess of arrangements justified under cliches of community and inclusion without exploring alternative, modern systemic answers that could provide decent treatment, care and lives for severely autistic NB adults.  The fundamental principles advanced by Paul McDonnell in 2010 are similar to what is beginning to happen in British Columbia as described on a CBC article: $28M autism centre supporting families breaks ground in Richmond, B.C.    The description on the CBC site indicates that the network would provide comprehensive support to children, adults and families affected by autism with a center and facilities around the province although it does not indicate that residential care for those with severe autism will be provided.

New Brunswick has made substantial gains in Early Intervention and significant though less comprehensive gains in our schools.  The biggest obstacle to development of a comprehensive adul autism care plan in NB has been the reliance on community and autism cliches and close ties between government and community charities which fight against any attempt to develop evidence based exceptions to their philosophical "community" and "inclusion" beliefs. 

In NB governments and "community" charities simply ignore and refuse to acknowledge the severely autistic adults living in the psychiatric hospital in Campbellton, general hospital wards or group homes lacking autism trained staff and professional oversight.  They refuse to acknowledge that the specialized care and treatment needed to address adult autism needs does not exist in the communities. They simply refuse to acknowledge that an expertise based center for adult autism treatment and for those most severely affected by autism disorder .. permanent residential care .. is needed. 

Autistic adults in NB, which now includes my son Conor, have been, and will be, harmed by the false belief that magical communities solve all problems. They don't and autistic adults pay the price in NB as they do in Ontario.

Historic Discussion of Adult Autism Care and Treatment in the New Brunswick Legislature May 28, 2015

Autism Advocacy in front of the New Brunswick Legislature, autistic persons, family and friends gather with MLA Ernie Steeves to advocate for Adult Autism Care and Treatment

It was an historic day at the New Brunswick Legislature yesterday as discussion and debate began on issues of adult autism care and treatment for the FIRST time to my knowledge that has happened. Opposition MLA Ernie Steeves pictured above in the white shirt and blue tie filed the motion and led the discussion.  Mr Steeves presentation was excellent, well informed and put the issues of adult care and treatment on the NB Legislature records.  The Government response by Social Development Minister Cathy Rogers did not really address the issues although in fairness to Minister Rogers she did ask me for a meeting to discuss the issues presented by Mr. Steeves.  The Opposition reply to Minister Rogers was delivered by MLA Jake Stewart who had previously taken up the issue of adult autism in a very meaningful way by advocating successfully for a young autistic adult in his riding who was on the verge of being evicted from his special care home because he was turning 19.  Mr Stewart's reply was also very passionate, well informed and was important to ensure that the discussion stayed on topic. The discussions started late in the afternoon 5:00 pm and will continue on another day. A note that some may find particularly interesting: two autistic persons were present in the legislature during the discussions; (1)  Ricky Barry shown with the ball cap holding the sign and standing beside Mr. Steeves in the picture above and (2) young Cameron  brought in to the legislature later by his mother. 

Above MLA Ernie Steeves who filed  and led the Opposition Motion on Adult Autism Care and Treatment Services and autism advocate Cynthia Bartlett 

Government MLA Brian Kenny with Autism Advocate Harold L Doherty

MLA Kenny was very supportive

Above MLA Trevor Holder (L) and (R)  Prominent Human Rights and Disability Advocate  Randy Dickinson who, among things,  serves as NB Human Rights Commission Chairperson and Fredericton City Councillor and  formerly served as  Executive Director  of the Premier's Council on Status of Disabled  Persons.  Mr. Dickinson came to the Legislature to exxpress his support for the need for adult autism care and treatment. 

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

Autism Advocacy NB Event:  Adult Autism Center Information Protest

Where: NB Legislature Grounds, Fredericton

When: Thursday, May 28 at 1:30

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

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

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

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

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

...

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

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

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

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

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

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!!!

Conor Enjoyed Nature With An Osprey Day In His "Back Yard" The North Riverfront Trail, Fredericton

Conor embraced his right to enjoy nature a couple of times today (so far) with fun walking and running in his "back yard" Fredericton's North Riverfront Trail. He also took time to throw some rocks into the St. John River along the way and check out the neighbors, the Osprey family, as they prepared their nest for some new arrivals. It may not be an evidence based treatment for autism but getting outdoors in nature makes his Dad feel much better and I believe it helps Conor too.

Autism and Epilepsy from Facebook to Reality: Conor Experiences Another Seizure

UPDATE: I had originally indicated the the persons with Conor when he had his seizure 2 days ago had not seen convulsions.  That is what I was told when I arrived.  Yesterday though I received the notes of the education aide who was with him throughout the seizure and they indicate he was convulsing for several minutes, in other words a classic tonic-clonic seizure including fall and  convulsions.

Earlier today I posted to my Facebook page and to the Autism Society New Brunswick FB page the link to Tonic-clonic seizures at Epilepsy.com.  I included the note that it was important for persons with autism to be aware of such seizures because of the high number of person who suffer from epileptic seizures including my autistic son.  A few hours later I got a call from the Leo Hayes High School and was informed that Conor had suffered a seizure. They did not think it was Tonic-Clonic although he had fallen and lost consciousness.  When I arrived he was being attended to and was sitting in a wheelchair.  He was groggy with very limited speech and needed assistance getting into the car for transportation home in the Dad-Mobile.  He was tired at home and I insisted he stay on the couch for awhile and rest.   Dad and Mom proceeded to provide the sure fire Spoil Em Rotten Recovery Treatment including supper from Papa John Pizza.

From Facebook to Reality in a Flash.  It can happen.

Gallant Government Builds Centre for Youth With Complex Needs In Campbellton Far From Most NB Families

I understand former Youth Advocate Bernard Richard's outrage over the Gallant government's announcement that it will build a new centre for youth with complex needs in Campbellton. I have long criticized New Brunswick governments for sending NB adults with severe autism disorders out of the province to Spurwink Maine and to the north in Campbelton on NB's northern border with Quebec far from the vast majority of NB families in the South and from the autism expertise that has been developing in Fredericton. .   Apparently the youth complex needs group had also recommended sites in the south closer to families. I understand Mr Richard, I understand.  

Sebastien's Sad and Scary Adult Autism Reality in Moncton, New Brunswick

When autistic persons in New Brunswick turn 21 particularly severely autistic adults services many services will no longer be available. For severely autistic adults adulthood can be bleak, sad and scary. This is Sebastien's story, a severely autistic 21 year old from Moncton, New Brunswick ... as told by his obviously heartbroken and scared mother Lise.

Autism Society New Brunswick Meeting May 23 at 1 PM UNB Fredericton Tilley Hall Room 303

UNB Fredericton,  South Side Fredericton 

Tilley Hall, RH Side Looking Down Hill From 

Harriet Irving LibraryJust Pass Singer Hall

Tilley Hall Room 303

Saturday May 23, 2015, 1-4
1 - 3 Public Discussion Autism Services
3-4 ASNB Organizational Matters

Public Invitations: The following invitations have been sent to various political figures including government and key cabinet members,  party leaders, media and other persons who have shown interest in autism services in NB.

Date:       Saturday, May 23, 2015, 

Time:       1-3 PM public

Location:   UNB Fredericton, Tilley Hall, Room 303

The meeting will be open to the public for discussion from 1-3 pm and a meeting of ASNB from 3-4.

Public discussion will focus on:

1)  First on Adult autism care in NB and the need for an adult autism facility and network for residential care and treatment.  

2) Followed by public discussion of early autism intervention and school based services - room for improvement.

Who are we?

The ASNB is open to anyone in NB with an interest in autism and autism services.  Historically that has typically involved parents advocating for services for their children but has also included some adult autistic persons.

ASNB accomplishments:

1)  Advocated successfully for the establishment of NB's evidence based early autism intervention program, a program which was founded by UNB-CEL in both official languages and has received recognition by international experts like the Association for Science in Autism Treatment.

2) Advocated with moderate success for provision of autism trained Teacher/Education Aides & Resource teachers in NB schools. Training originally provided by UNB-CEL now provided by the Department of Education and Early Childhood Development.

3) Advocated successfully for reversal of the decision to close the Stan Cassidy Centre Autism program for autistic children and youth requiring tertiary level intervention. 

4) Advocated unsuccessfully for adult autism specific  treatment and residential care facility and network. Our unsuccessful advocacy on adult care has been puzzling in light of monies spent to send some autistic adults out of the province at a cost of $300,000 per year per person in Spurwink Maine and to send others to the Regional Psychiatric Hospital in Campbellton far from most families in south of the province. 

Introduction of the topics will be followed by discussion which is expected to be candid and courteous by all concerned.

Respectfully,

Harold L Doherty
Acting President
Autism Society New Brunswick

 Anyone interested in autism services in New Brunswick is invited to attend. Invitations have been to political leaders on a non partisan basis.  If you wish to have your MLA attend feel free to extend to her or him an invitation.

Many thanks to Paul McDonnell for booking this location for our use, just one of the many contributions he has made to helping persons with autism and their families in NB.

Check this page for further updates from time to time.