YOU Are Invited - It Takes a Village to Support Adults with Autism Spectrum Disorder August 18 1:00 - 3:30 the VILLE Cooperative - 241 Canada Street, Fredericton

“It Takes a Village to Support Adults with Autism Spectrum Disorder.”

Autism Advocacy New Brunswick is pleased to announce we will be hosting a meeting concerning the lack of Autism Adult Care Services in the Province of New Brunswick. 

This will be held on Saturday, August 18  from 1:00-3:30 pm at the VILLE Cooperative, 241 Canada St., Fredericton. 

We are extending an invitation to parents, self-advocates, and families, as well as persons who have a strong interest in supporting adults with Autism Spectrum Disorder. 

We have three guest speakers and they will be speaking on the following topics:

1. Harold Doherty, is a father of an adult son with Autism, a long- time Autism advocate and recipient of the Queen Elizabeth II Diamond Jubilee Medal (Autism advocacy) who is currently practicing law in Fredericton. He will speak on the history of Autism services in the Province of New Brunswick, and will illustrate the advancements that have been made in the past 15 years. Harold will also speak about the current lack of services for adults who have Autism Spectrum Disorder. His talk will address issues in regards to adults who have high needs, with limited to zero communications, who are intellectually challenged, and may have an existing co-morbid condition such as a seizure disorder. He will talk about the challenges that he and his family face with his own son on a daily basis. He will also emphasize the importance of being a unified voice if changes are to be made in this province. Parents, self-advocates and the community must be united, and become the voice for the adult population.

2. Lila Barry is a mother of an adult son who has Autism Spectrum Disorder. Lila is a former president of Autism Society New Brunswick, and a retired Executive Director of Autism Resources Miramichi. The scope of her career covers a span of 42 years, working in the field with persons with special needs. Currently, she volunteers at Autism Resources Miramichi, and her volunteer work encompasses advocacy within the Province of New Brunswick. A typical example is preparing for today’s event. She is a behind the scene girl, and is passionate in supporting persons with ASD. Lila will speak on her experiences raising, and working with children and adults who live with Asperger’s Syndrome or HFA.

3. Dr. Paul MacDonnell is a retired psychologist who specializes in Autism Spectrum Disorder. As a Professor Emeritus in Psychology at the University of New Brunswick, he has distinguished himself in his career. He has received international recognition for his research, and has been viewed as a model for others in the field. In 2004 the government of the day funded a province–wide Autism Intervention Training program, for preschool-aged children. The lead consultant was Dr. Paul MacDonnell. Years later, he was also the lead consultant when funding was made available to train Educational Assistants and Methods and Resource Teachers within the Department of Education. In 2015 Dr. Paul MacDonnell submitted a proposal on Adult Autism Care Services to the Province of New Brunswick. This proposal is called, “It Takes a Village to Support Adults with Autism Spectrum Disorder.” In simple terms, it is a comprehensive document that addresses all the needs of the adult population. Dr. Paul MacDonnell will be giving an overview of the proposal. It encompasses the needs of the full spectrum, including the needs of severely affected adults living with Autism, all the way to the adults who are living with Asperger’s Syndrome or High-Functioning Autism. The needs vary on the spectrum so it’s important to recognize that not all persons have the same needs and challenges.

Please note, as of today’s date Dr. Paul MacDonnell’s submission paper remains in the hands of the Province of New Brunswick. There has been no response or action, nor do we anticipate any in the near future without everyone's involvement. It is only through efforts and dedication of parents, self-advocates and community that changes will be made. Please be the voices these adults need you to be. The announcements of the Preschool Autism Intervention Training Program and the training for Educational Assistants, Method and Resources Teachers, Autism Clinical Supervisors for School-Aged Children were announced a few weeks prior to 2 elections. This is why we must give voice now, otherwise there is a high likelihood the inaction will continue.

We encourage all parents to attend (who have sons or daughters, who are preschool age, a teen or adolescent, caregivers,  a young adult or middle-age adult or senior who are living with Autism Spectrum Disorder.)

“A child with Autism, grows into an adult with Autism.”

Autism Advocacy New Brunswick

June 19 2017. Harold L Doherty: 

The need for serious autism advocacy in NB is particularly critical at the level of adult autism residential care and treatment. Many of us advocated for the early autism intervention services in place today, for autism trained Education Aides and for reversal of the decision to close the Stan Cassidy Autism team. 

Now we need EVERYONE with a serious interest in adult autism to come together and advocate for an adult autism residential care and treatment network with a center in Fredericton, the home of NB's autism expertise, with autism group homes around the province as described by Paul McDonnell in his 2010 CBC comments pinned to this FB page. I have posted an email AutismAdvocacyNB@gmail.com and plan to incorporate AANB as a non profit and begin action in Mid July. You can receive updates here. I will also set up an Autism Advocacy NB group site on gmail for advocacy discussions as well. 

Feel free to email me at AutismAdvocacyNB@gmail.com

Autistic Adults Die Young, 16-30 Years Before Others, But Gallant Government Continues to Ignore the Need for an Adult Autism Center/Network

My 21 year old son Conor is a joy in the lives of his  family , friends and those who have met him in NB schools, Fredericton stores and generally. Conor is severely autistic with intellectual disability and epilepsy (frequent tonic clonic seizures).  This places him squarely in the midst of the subgroup on the Autism Spectrum Disorder whose life expectancy is shorter by 30 years than the general population. 

The NB government has ignored those realities for decades and has refused, since 2010, expert advice to build a centralized expert autism center AND network which would address increase the chance for autistic adults to live longer, happier lives.

People with autism tend to die decades younger than the rest of the population, and more needs doing to understand the problem’s causes and to find potential solutions, says a new report from the charity Autistica.

Autistica’s report,1 drawing on recently published research in Sweden, said that people with autism die 16 years sooner on average than they otherwise would, and those whose autism is combined with intellectual disability die 30 years sooner.

Death comes earlier to autistic people, whatever the proximate cause. But epilepsy, which is diagnosed in 20-40% of autistic people, is a major cause of death, especially in those whose autism is severe and combined with learning difficulties.

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People with autism die 16 years earlier on average, says charity BMJ 2016;352:i1615

Paul McDonnell, September, 2010

"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 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.

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 residential 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."  

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Paul McDonnell Ph.D. is NB's foremost autism expert.  His recommendations via the CBC in 2010 were repeated during a meeting with Minister of Family and Community Services/Social Development Cathy Rogers not long after the Gallant government dame to power.  Dr. McDonnell enlarged on his media comments with a written presentation and was accompanied by parent advocates, including me.  Minister Rogers brought some key advisers with her and I was personally optimistic.  Unfortunately Minister Rogers was moved in a cabinet shuffle and Minister Horsman transferred from Justice.  Minister Horsman has shown no inclination to take adult autism issues seriously and is content with exiling NB autistic adults to the Restigouche Regional Psychiatric Hospital on our northern border far from most families and far from the autism expertise developed in Fredericton a central location closer to most families.

As stated above Social Development Minister Horsman is happy with autistic adults being sent to the Restigouche Hospital on NB's Northern Border far from most families in southern and central NB.  Campbellton itself is a small city with a shrinking population.   When prominent Liberal Bernard Richard completed his mental health review he expressed thinly veiled anger at the current Gallant Liberal government for its decision to place a mental health center in the Restigouche Hospital in Campbellton. He was joined in criticizing that decision by fellow prominent Liberal and former cabinet minister Michael Murphy QC:  

Bernard Richard slams choice of location for youth facility

Putting mental health unit in Campbellton is 'worst' decision former youth advocate has seen in a while

By Matthew Bingley, CBC News Posted: May 11, 2015 7:50 AM AT Last Updated: May 11, 2015 12:26 PM AT

"In January, Richard and a colleague canvassed mental health professionals to see what they wanted for a new facility.They made recommendations to the government to build the facility in Moncton where access to two hospitals, in both languages would be available.They also argued that an urban location would have more luck producing specialized services and luring doctors.

Michael Murphy also chides choice

Former Liberal health minister Michael Murphy took to Twitter Monday to join those panning the choice of Campbellton. After Richard went public with his concerns about the choice, Murphy joined in the chorus of opposition.A mental health treatment centre for youth has been discussed in New Brunswick for more than a decade and in a rare Saturday news conference, the province announced the project would proceed adjacent to the Campbellton Regional Hospital.

"Bernard Richard...appalled by location of new centre.  I agree," tweeted Murphy.

Murphy blamed the decision on Liberal party politics and pointed to his former cabinet colleague Donald Arseneault as the likely source of the decision. Arseneault is the current minister of energy and mines and represents the riding of Campbellton-Dalhousie in the legislature. Arseneault made the actual announcement in Campbellton on Saturday, rather than Health Minister Victor Boudreau.

"Power of Donald Arseneault is evident by this," tweeted Murphy. "The location away from family for most young patients may only aggravate the condition.  But this government is intensely political."

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Autistic adults have drastically shortened life expectancy - 16 to 30 years shorter depending on their location on the autism spectrum.  Those expectations and the quality of their lives could be expanded dramatically if an autism center based in Fredericton near the autism expertise developed over the last 15-20 years could be built as a center for an autism network of group homes which together could provide the long term residential care and treatment needed for persons with moderate to severe autism disorders and related disorders.   Unfortunately as prominent Liberals Bernard Richard and Mike Murphy have pointed out the current Gallant government is motivated by politics not by concerns for people like NB's adult autistic population with their shortened life expectancy.

I have to continue to hope, and to advocate, for a different approach to adult autism care in NB. My son has a shortened life expectancy because of his condition and because our government ignores his reality a reality shared by many NBers with autism disorders. It doesn't have to be this way. Professor McDonnell has the professional expertise to point to a better future and he has done so.  

I also rely on my  expertise as a dedicated father who has seen my son, as his mother and I raised him,  struggle with his serious challenges: severe autism, intellectual disability, seizures, self injurious behaviours.  I have also  though seen the joy he has experienced in life; a joy which he shares with all who know him.  I post pictures of my wonderful son again following this commentary and hope that before too long NB governments start to address the challenges my son will face when I can no longer, through age or death, provide the care he needs; the care that will not permit his life, and his joy, to be drastically shortened. I know my son can have a happy life, a healthy life. I have helped him and experienced his successes and joys.  I will continue to do so and will continue to hope for a responsible government to take charge and develop the adult autism center and network that has been needed for so long.