"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".
"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".
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