Autism's Hidden Crisis - Intellectual Disability and 30 Years Shortened Life Expectancy

CTV Atlantic and reporter Jessica Ng recently interviewed me as I sat with my son Conor at the Northside Farmers Market in Fredericton North.  Ms. Ng  contacted Autism Connections Fredericton whose spokesperson provided commentary as well and he described autism as "complex" but in the reported section of his comments did not mention the words "intellectual disability"even though persons with autism AND intellectual disability comprise 50-56% of the autism spectrum according to World Health Organizaton  and US CDC estimates. 

The ACF spokesperson did mention that 30% of persons with autism have epilepsy/seizures but he did not  mention that by far the greatest number of those with autism and epilepsy is found among those with autism and intellectual disability - that ID increases the risk of epilepsy in ASD  by 3 to 5 times:

The first question that arises concerns the exact prevalence and risk factors for the ASD–epilepsy comorbidity. For individuals with ASD, estimates of the prevalence of developing epilepsy in a lifetime range from 2.7% to 44.4%,7-15 with a recent review reporting a sevenfold increased risk of epilepsy in individuals with ASD relative to the general population.16 A key reported risk factor is the presence of intellectual disability, which increases epilepsy risk in ASD by three to five times.7, 17

Prevalence and risk factors for autism spectrum disorder in epilepsy: a systematic review and meta‐analysis   

Parents of persons with Autism and ID should be informed of this important information that ID increases the risk of epilepsy in ASD  by 3 to 5 times!

Parents should know that their children with autism and ID are at serious risk of developing seizures AND face an average life expectancy 30 years shorter than persons in the general population.  The studies reporting this information were summarized in the Autistica UK Report Personal Tragedies, Public Crisis:

Many families and autistic individuals have raised concerns over early deaths in autistic people. Ground-breaking new research now confirms the true scale of the mortality crisis in autism: autistic people die on average 16 years earlier than the general population. For those with autism and learning disabilities, the outlook is even more appalling, with this group dying more than 30 years before their time. 

Persons who descrribe autism as "complex"but hide this important information about ID and ASD,  including Academics and psychologists at events like the Atlantic Provinces "Autism" Conferences, should upgrade their practices and start providing this important information about Intellectual Disability in Autism and the serious premature mortality facing persons with autism and ID.

Parents of Children with Autism AND Intellectual Disability, Unlike Autism Researchers, Do Not Exclude Our Children

Recent studies have documented an alarming fact.  Alleged "Autism" studies for the most part, 94% , do not include subjects who suffer from autism AND intellectual disability even though approximately 50% of persons with ASD also have an Intellectual Disability.  Fortunately for our children, young and adult, who suffer from their version of autism SPECTRUM disorders most parents will not exclude them. Apparently ill informed, ignorant parents know something about our autistic children that autism researchers do not.

 A couple of pictures below show a glimpse of my son's autism suffering and several others show the joy he has experienced and brings into the lives of his parents.  parents who provide care and love.

The swelling from a hand bite Conor inflicted on himself in high school when the phone in an office  near where Conor was located kept ringing because no one was there to answer it.  When he was in grade school, in a NB ""Inclusive"" classrom he used to come home nearly every day with bite marks on his hands.  When he was moved to an empty room where he studied with the assitance of an  autism trained aide the biting stopped. Night and day. 

In this picture above Conor was enjoying a Saturday morning swing on his old school grounds, beautiful, mild, quiet day.  Suddenly he began smashing his head in obvious pain. I had worked on a summer job with a fellow who suffered from  seizures and displayed such pain on occasion and sought medical attention for the possibility Conor was suffering from seizures which he was.  Several grand mal/tonic clonic seizures later Conor was confirmed with epilepsy and began seizure medication.  As I now know Conor's epilepsy/seizures are common for persons with autism and ID.

Despite the challenges faced Conor has been happy and has brought great joy to those who know him. In the pictures below Conor's love and joy is clear and attributable to him. His parents, if I may say, know a little bit about what it takes to assist him in having a happy life,  and unlike researchers we will not cut and run - we will stay the course. We know our children better than researchers who do not study them but exclude them.

October 2, 2015 Fredericton Liberal Candidate Matt DeCourcey stated Liberal Party supported creation of a National Autism Strategy addressing ABA and IBI access and coverage under Medicare:- It Didn't happen

On October 2 2015 Fredericton Liberal candidate Matt DeCourcey promised that the Liberal Party was Committed to A National Autism Strategy Addressing Access to ABA/IBI 

 IT Didn't Happen 

On October 21, 2019 I will remember

Fredericton Liberal Candidate Matt DeCourcey

Email received October 2, 2015 from Fredericton Liberal Candidate Matt DeCourcey stating Liberal Party supports creation of a National Autism Strategy addressing ABA and IBI access and coverage under Medicare:

Hi Harold,

Thank you for the email. I apologize for the delay in my response. I want to let you know that the Liberal Party and I fully support the creation of a national autism strategy. Our party recognizes that in certain provinces, autism treatments, including ABA and IBI are covered under provincial Medicare programs and are more readily available in other provinces. Health care access challenges like these are something that the Liberal Party is committed to addressing.

First and foremost, we need a conversation that goes beyond simply mirroring previously made commitments. We need a partner in the federal government that is committed to innovation and collaboration with the provinces and territories to achieve a modern, efficient, equitable system of universal health care. The Liberal Party is committed to that collaboration.

A Liberal government will re-engage the provinces after 10 years of Stephen Harper neglect. We will meet on Canadian health care and negotiate a new Health Accord with the provinces and territories, including an agreement on long-term funding. Furthermore, our party is committed to pan-Canadian collaboration on health innovation. We will work with provincial jurisdictions to overcome obstacles to innovation in health care delivery and access.

Thank you again for your email. I hope that I’ve helped to clarify the Liberal Party’s position on support for those living with autism. If you have any further questions please reach out.

Best,

Matt

Autism AND Intellectual Disability: It is NOT Complex or Complicated - It is a Challenging and Substantial Component of the Autism Spectrum of Disorders

Autism AND Intellectual Disability: It is NOT Complex or Complicated - It is a Challenging and Substantial Component of the Autism Spectrum of Disorders

A local community center, Autism Connections Fredericton, does not like to use the expression "Intellectual Disability" when referring to autism or persons with autism. ACF will refer to autism as "complex" and publicly offer to "chat and chill" with persons with self diagnosed autism but make no reference, even in a publicly financed "survey" to determine needs of the NB autism "community" of the very large numbers of persons with autism AND intellectual disability. Most of this large half of the total autism population (not all of whom can participate in community centre events) have serious every day residential care and treatment requirements. Many of whom are sent to the Restigouche Hospital Horror Show.

What is required is a range of residential care and treatment options with a centrally located adult autism treatment centre as summarized in the Autism Village presented to government in 2015 by Paul McDonnell together with myself and fellow autism parent advocate Cynthia Bartlett. (Ms. Bartlett, myself and another parent advocate presented Professor Emeritus McDonnell's 2015 paper again this year.)

ACF is not alone in its neglect of the ID half of the autism spectrum. CONNECT a component of the Atlantic Provinces Autism Conference hosted an APAC conference without a single written submission concerning autism AND Intelletcual Disability. The same story is holding true for the UNBCEL APAC which presents only NBACL as a source of information on intellectual disability and autism. As a NB parent of a 23 year old son who advocated for the past 20 yeas for evidence based services for all persons on the spectrum I know that NBACL did not assist our efforts and sometimes opposed us. As a parent I have never seen any material information from NBACL that would assist me in providing 24/7 care to my son with autism and ID.

UNBCEL and ACF know better. They know that the World Health Organization has consistently estimated that 50% of the World's autism population are also intellectually disabled. They know or they should know that the CDC indicates that only 44% of persons with ASD have average or above average intellectual ability, 32% have an intellectual disability and 24% are borderline intellectual disability.

The 2019 Ombud report on the failures at the Restigouche and the recent CBC Karissa Donkin report on its disciplinary issues leave no more room for pretending that the care and treatment of approximately half of NB's autism population is being properly considered.

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.