UNBCEL Atlantic Provinces Autism Conference Continues Exclusion of the Voices of Adults with Autism and Intellectual Disability

I received another advertisement message from the Atlantic Provinces Autism Conference which is hosted by UNBCEL this year and is continuing the APAC policy of excluding parents of adults with autism and intellectual disability and I responded again:

Unfortunately "autism" as used by the APAC does not include those with autism and intellectual disability. The APAC is continuing its exclusion of NB parents of adults with autism and Intellectual disability from their speakers list. We speak for our autistic adults with ID who can not speak for themselves. We do so with the knowledge gained from raising and providing 24/7 care for them throughout their lives. We do not draw a salary for our efforts and do not seek financial gain for doing so. We fight for the services they need as we did for the early autism services which resulted in the establishment of the UNBCEL autism program which is hosting this APAC conference (how soon they forget). We fought for autism trained aides and hundreds were trained. We fought successfully for the reversal of the decision to close the Stan Cassidy Centre autism team which now provides services to age 19. NB adults with autism and Intellectual disability have been warehoused at the Restigouche Hospital, where patient abuse is well documented (Ombud Report, CBC ) far from families and contrary to the United Nations Convention on the Rights of Persons with Disabilities.

NOTE: The UNBCEL Atlantic Provinces ""Autism"" Conference. more accurately described as the Atlantic Provinces Autism Without Intellectual Disability Conference appears to be an accurate reflection of the autism research bias which according to a recent meta analysis excludes subjects with autism AND intellectual disability in 94% of studies assessed. 

See Selection bias on intellectual ability in autism research: a cross-sectional review and meta-analysis.

Current global estimates suggest the proportion of the population with autism spectrum disorder (ASD) who have intellectual disability (ID) is approximately 50%. ..... Meta-analysis estimated 94% of all participants identified as being on the autism spectrum in the studies reviewed did not have ID (95% CI 0.91-0.97).

CONCLUSIONS:

We found selection bias against ID throughout all fields of autism research. We recommend transparent reporting about ID and strategies for inclusion for this much marginalised group.

UNB-CEL Atlantic Provinces "Autism" Conference Bias Against Autism and Intellectual Disability

A big issue facing adults with autism and ID is residential care and treatment. Parents have advocated for closure of the Restigouche where abuse is documented and autistic adults have lived far from families and for the development of the Autism Village concept since 2008. It will NOT be addressed in a meaningful manner at the 2019 Atlantic Provinces Autism Conference at UNB-CEL where none of the speakers will be NB parents of adults with autism AND Intellectual disability. It is parents who advocate for our children including adults with intellectual disability and it is parents who prompted the creation of the UNB-CEL autism program.

That Autism Village concept originated with Paul McDonnell Professor Emeritus who developed a 2015 paper which has been presented to government. It is unfortunate that NB parents who speak for their young AND adult children with autism and intellectual disability will not be represented among the speakers' list.

The WHO has long and consistently estimated that 50% of persons with autism also have an intellectual disability. Recent studies show that persons with Autism AND ID are grossly under represented in autism research which results in a misrepresentation of the effect of autism on persons with autism and ID and on their families and caregivers. This 2019 UNB CEL version of the Atlantic Provinces Autism Conference is carrying on where the 2017 Shediac CONNECT conference left off. That conference featured NO speakers addressing autism and ID issues. This conference does have the NBACL speakers but they are a charity and can not ADVOCATE on behalf of persons with autism and ID. It was parents, including me, and many others who fought for autism treatment and services in NB and which led to the establishment of the UNB-CEL Autism program. How soon they forget. Yes I would have been happy to speak at this program on the needs and challenges facing adults with autism and ID in NB.

This Autism Dad is Leaning Green Especially As the Green Grows and the NDP Falls

NB Green Party Leader David Coon 

CBC News Report 14 N.B. New Democrats jumping ship to join Greens

Social Sharing

This father of an adult son with autism, intellectual disability and epilepsy has been Leaning Green for the impending federal election as I said a few days ago on my FB page.  And now as reported by CBC News, 14 NDP members in NB are going green adding to the party's strength. I will decide for sure when I see if the Green Party commits to working to establish a National Autism Policy that would ensure evidence based treatment, education and long term residential care and treatment for adults with severe autism needs. I understand that many such issues are provincial but federal governments can work with provincial governments or we would have NO medicare at all.

I know neither the PCs nor the Liberals will do so. The NDP is falling. Its current leader has not visited NB and no NB NDP candidates have been announced. The Liberal Party of Canada already rejected their #WPG2016 E-03 Medicare Coverage for Autism Treatment resolution passed unanimously (and endorsed by Bob Rae). Here in NB Fredericton Green candidate Jenica Atwin has shown real interest in working on autism issues.

PROTEST AT THE UNB-CEL Atlantic "autism" Conference, Fredericton Nov 7 and 8

Conor and Dad.  Conor can not speak for himself on 

complex issues. I,  and his mother, speak for him.

PROTEST AT THE UNB-CEL Atlantic "autism" Conference, Fredericton Nov 7 and 8

NB Adults with Severe autism & intellectual disability are excluded from the Atlantic Provinces Autism Conference UNB-CEL Nov 7 and 8.

I was starting to sign up for the above noted conference being held by UNB-CEL. I had second thoughts though when I reviewed the agenda in more detail. There are some credible speakers Dr. David Celiberti of the Association for Science in Autism Treatment in the US and Dr. Tara Kennedy of the Stan Cassidy Centre in Fredericton but NB parents of adults with severe autism and intellectual disability, the voices of their adult children are excluded. Our adult children are not represented at this Atlantic "Autism" conference.

There are no NB Parents such as myself or the many other parents who advocated for the early autism treatment program, autism & ABA trained school aides or reversal of the decision to close the Stan Cassidy Autism Team. Nor are there parents of adult persons with severe autism disorder and intellectual disability who comprise 40-50% of the autism spectrum. The residential care and treatment of adults with severe autism and ID is not mentioned despite the horror of being imprisoned in the Restigouche Hospitral far from families and autism expertise in NB. I might attend the conference if questions are allowed or might attend outside to protest the exclusionary nature of the conference.

It is clear from a reading of the Autism Coneference web site page at UNB-CEL that the UNB-CEL which provided so much evidence based training ... in response to parent advocacy ... has now forgotten the now adult children of those parents, the parents themselves, and the very fact that autism is a mental health disorder requiring treatment and in some cases permanent adult residential care and treatment.

I will be outside the doors at the Atlantic Provinces "autism" Conference in Fredericton on November 7 and 8. I will be carrying a sign and I will be speaking on behalf of my adult son with severe autism and intellectual disability.

Adults with Severe Autism and Intellectual Disability Excluded from The Atlantic Canada Autism/Neurodiversity Conference November 7 and 8

Conor as seen by his family and friends,

Conor, and oher adults with severe autism and intellectual disability, as seen by UNB-CEL

NB Adults with Severe autism & intellectual disability excluded from the Atlantic Provinces Autism Conference UNB-CEL Nov 7 and 8. I was starting to sign up for the above noted conference being held by UNB-CEL. I had second thoughts though when I reviewed the agenda in more detail. There are some credible speakers Dr. David Celiberti of the Association for Science in Autism Treatment in the US and Dr. Tara Kennedy of the Stan Cassidy Centre in Fredericton.

There are no NB Parents such as myself or the many other parents who advocated for the early autism treatment program, autism & ABA trained school aides or reversal of the decision to close the Stan Cassidy Autism Team. Nor are there parents of adult persons with severe autism disorder and intellectual disability who comprise 40-50% of the autism spectrum. The residential care and treatment of adults with severe autism and ID is not mentioned despite the horror of being imprisoned in the Restigouche Hospitral far from families and autism expertise in NB. I might attend the conference if questions are allowed or might attend outside to protest the exclusionary nature of the conference.

It is clear from a reading of the Autism Coneference web site page at UNB-CEL that the UNB-CEL which provided so much evidence based training ... in response to parent advocacy ... has now forgotten the now adult children of those parents, the parents themselves, and the very fact that autism is a mental health disorder requiring treatment and in some cases permanent adult residential care and treatment.

Adult Autism Residential Care and Treatment - Time to GET POLITICAL Once Again.

Time to get political once again.

We Need Some Real Autism Advocacy to advocate for the Residential Care and Treatment for Adults with Autism INCLUDING severe autism with Intellectual Disability and Epilepsy.

I have been advocating, with other autism parents, for almost 20 years for early autism ABA treatment, for autism & ABA trained school aides and for reversal of the decision to close the Stan Cassidy Autism team. We had successes in all these areas but NO success in advocating for an autism village network including an autism centre to provide residential care and treatment as needed for persons on ALL points of the autism spectrum of disorders including the 40-50% with intellectual disability who die 30 years prematurely from seizures. Contact me hlddoherty5463@gmail.com if you want to participate in advocating for the Autism Village & Center needed to address these needs. Following is a video of me being interviewed by Medicare for Autism Now about our efforts for early intervention . LETS ADVOCATE NOW for adult autism residential care and treatment.

https://www.youtube.com/watch?v=6WzrQWv30dY&fbclid=IwAR2VRnAag74sOV_WfU3IPXhWsyJ5x4AXv7RosPyF2s7_3s9uXB0f_dQ1C6I

Parents of children with autism and intellectual disability should take note. Seizures can be deadly and many with autism and ID will eventually suffer from seizures.

Parents of children with autism and intellectual disability should take note. Seizures can be deadly and many with autism and ID will eventually suffer from seizures.

Disney Channel star Cameron Boyce died this weekend at 20 from a seizure while sleeping. The young actor had already built an accomplished acting career and was engaged in social issues as well. I am not asserting that he was autistic just that he died from a seizure. 

The 2015 Autistica UK Report "Personal Tragedies, Public Crisis" examined studies on premature death in autism. They found that persons with autism and intellectual disability die on average 30 years earlier than persons in the general population with the primary trigger being a seizure. Many with autism and intellectual disability including my son also suffer from epilepsy and seizures which may not appear until adolescence as it did in my son''s case. Parents of children with autism and intellectual disability should ask their family doctors or any health care professionals in their children's lives about epilepsy and seizure risks.