Fredericton Liberal Matt DeCourcey: Liberal Party Committed to A National Autism Strategy Addressing Access to ABA/IBI

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 Speaks Enters Into "PURE" Autism Research PACT; Excludes Autism With Intellectual Disability

Autism Speaks has entered into a Research PACT to continue its focus on "pure autism"  (referred to in the PACT as core symptom autism),   while ignoring 50% of the autism spectrum, those with intellectual disability (WHO, September 2013):

"Working together, the PACT team is developing a platform of preclinical tests to evaluate and compare new medications for the core symptoms of autism."

Vivanti and his colleagues offered the term "pure autism" to refer to the tendency of autism studies to intentionally exclude subjects with autism AND intellectual disability:

"the question of the nature of the association between ID and ASD has received little attention. One common view in the current conceptualization of ASD is that ID is a comorbid condition that occurs over and above ASD symptomatology in some individuals with ASD (Nordin and Gillberg, 1998; Cashin et al., 2009; Matson and Worley, 2013). The term “comorbidity” is used in medicine to denote clinical entities “unrelated in etiology or causality to the principal diagnosis” (e.g., cancer diagnosed after a stroke), and therefore conceptually distinct from complications or sequelae of the principal diagnosis (Greenfield, 1989; Iezzoni, 1994, p. 52; see also Lilienfeld et al., 1994). Other authors suggest that ID and ASD are related in terms of their etiology (i.e., that which causes ID also causes ASD) but they are not themselves causally related (e.g., Waterhouse, 2013). The perspective according to which ID is a distinct additional entity to ASD is reflected in many aspects of ASD research. For example, many studies report that participants with “comorbid ID” were excluded, to allow for the study of “pure autism”; that is, autism not confounded by ID."

The need to study the existence of intellectual disabilities and autism disorders was highlighted in 2004 by La Malfa:

"There is a strict relationship between ID and autism: 40% of people with ID also present a PDD, on the other hand, nearly 70% of people with PDD also have ID. ... The study confirms the relationship between ID and autism and suggests a new approach in the study of ID in order to elaborate a new integrated model for people with ID."

Autism Speaks has routinely obscured the existence of "autism's vast majority" (CDC medical epidemiologist Dr. Marshalyn Yeargin-Allsopp, CMAJ, 2010) who also have intellectual disability. Apparently it is not helpful for fundraising to point out the harsh realities of of autism disorders suffered by those with intellectual disability, many of whom, like my son, also suffer from epileptic seizures. This latest research venture accentuates Autism Speaks refusal to deal with the harsh realities of the disorder. Far easier to talk about blue lights and parade "autism" representatives with no apparent daily functioning impairment like John Elder Robison in front of the world than to face the autism reality faced by many with autism and intellectual disabilities and their families.

I hope the Autism Speaks PACT helps those with "Pure Autism" who do not suffer from the aggravated challenges of intellectual disabilities and epileptic seizures. Hopefully too "PACTS" will be formed by organizations that are willing, unlike Autism Speaks, to deal with the harsher realities of the intellectually impaired end of the "autism spectrum". 

OTARC Panel: Dr. Giacomo Vivanti: Does Severe Autism Cause Intellectual Disability?

Excellent panel discussion by the La Trobe University Olga Tennison Autism Research Centre (OTARC) with Dr. Giacomo Vivanti, Dr. Cheryl Dissanjake and Dr. Cynthia Zierhut.  The panel comments on the cultural representation of autism as genius in movies such as Rain Man and television series such as the Big Bang theory. Dr. Vivanti talks about autism research tendency to focus on high functioning autism perceived by many autism researchers to constitute "pure" autism research.  He calls this bias into question as non evidence based,  circular reasoning. There is no legitimate basis to separate autism and intellectual disability as "comorbidity".  

Dr. Vivanti's recent paper, Intellectual development in autism spectrum disorders: new insights from longitudinal studies,  has looked at the possibility that severe autism itself causes intellectual disability an hypothesis which itself is controversial.