The Silencing of Severe Autism Across the Pond AND in Canada and New Brunswick

The Silencing of Severe Autism Across the Pond

Much of what Jane McCready in the quotation below comments on Her full commentary can be found at the attached link above)  is true here in Canada where the Liberal Party of Canada passed a Medicare for Autism resolution but the Liberal PM Justin Trudeau simply ignored. Here in NB the need for an Autism Village of autism specific care homes with an Autism Centre centrally located in Fredericton has been ignored by Liberal and Conservative governments which instead sponsored the government based Autism Connections Fredericton to "tour" the province seeking input from parents and who recommended more funding for .... hold your breath ... autism community centres which primarily serve persons without the 50% (WHO figure) of the autism spectrum with severe autism and intellectual disability The Report trivialized and misrepresented the realities of the 50% of the NB autism spectrum with severe autism and intellectual disability. Meanwhile the UNBCEL presented an Atlantic Provinces Autism Conference which did not feature any of the NB parents who speak for our children with severe autism and intellectual disability.

The UK's embrace of a celebratory stance on autism obscures autism’s harsh realities and invites de-funding, writes Jane McCready

Jane McCready: 

"Not sure anyone other than severe autism/disability parents can understand that race to sort things out before we die. Dying with a severely autistic son feels a bit like leaving a 2 year-old standing alone in the middle of a busy motorway. Helpless and vulnerable out in the world. Plans have to be made, siblings consulted, we have to make watertight wills, have to make sure he learns as many independent skills as possible. Before we become little old people too frail to help him with the skills he hasn’t learned to manage himself. Shaving, showering, cutting his toenails, making food, taking a bus to the supermarket, talking to express his needs. The list is endless. All stuff that the late-diagnosed, level 1 autists who lecture me on Twitter, and take places on autism boards, have picked up easily and take for 

granted. ...................  https://www.ncsautism.org/…/the-silencing-of-severe-autism-…"

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.