Sunday, October 06, 2013

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, ; Cashin et al., ; Matson and Worley, ). 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, ; Iezzoni, , p. 52; see also Lilienfeld et al., ). 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, ). 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". 


Anonymous said...

I agree with you Harold. It's much easier for most to think autism is just a wonderful state of being. Parents like this(below)have. no.clue what living with severe autism, constant seizures and other dangerous medical issues along with the autism is like. They'll claim they get it but when these types truly believe autism is great, and blog about that nonstop (and I mean nonstop! This woman never seems to get off her blog, facebook and twitter. Many times she seems to update her facebook literally by the hour boasting about something! Must be nice to have that kind of free time. I'm too busy dealing with severe autism) and this is the message people are constantly bombarded with, I fear there is no hope that our kids will ever be recognized.

"Diary of a Mom
October 3 via mobile.Holy crap on toast. I just had the most amazing conversation with Brooke about autism.

We're going to the Autism Speaks Walk on Sunday. As many of you know, I get very uncomfortable with the rhetoric that they use - I have a lot of trouble exposing her to the whole platform of autism as tragedy - and as a disease that needs to be cured. I worry about how that kind of ideology will effect how she... feels about herself, as autism is inseparable from and integral to who she is.

So I said that. Out loud. To her. I literally said, "When we go to the autism walk there will be some people talking about curing autism. And I just want you to know that Mama doesn't think that anything about you needs to be cured, okay?" That's a LOT of words, but she said, "Okay."

I asked, "Who is autistic?" And she said, "Us." And I didn't correct her, because, well, I don't know, I just didn't.

And then I said, "I actually think that autism is something to be proud of. Because it's part of what makes you you. And you are awesome, aren't you?" And she said, "Yup." And I said, "Who's a cool kid?" And she said, "Me." And I said, "And since autism is part of you, then autism must be cool too."

And then, I can barely process this, but I swear to God she said these words ...

"I get it."

Holy crap."

Anonymous said...

Hi Harold,

I'd love to see you pen an open letter to Judith Ursitti and ask her publically how she can work for an organziation who doesn't seem to care at all about the severe end of the spectrum when, indeed, her own son is very severely affected, probably even more affected than most. What drives people like this to keep putting money in the pockets of the vile people that make up Autism Speaks? She, and so many others, walk and run and are nothing but minions of Autism Speaks. It baffles the mind.

Parents need to contact her and others at Autism Speaks and ask them the hard questions.

Judith Ursitti, CPA
Director State Government Affairs Autism Speaks

Greater Boston Area
Government Relations

Anonymous said...

Unfortunately Diary Mom has gotten so much praise from her clueless followers that she is now writing a book which will do nothing but convey even more to the uneducated masses that autism is just spectacular. My hope is someday a parent of a child with severe autism and epilepsy will write a book to show the world what living with this severe disability is really like. Kim Oakley would be great or how about you Harold! Both of you are great writters and have the ability to put forth exactly what others are experiencing.

Ian MacGregor said...

I think it's a natural tendency to write about the good times, when our children are enjoying themselves and we are buoyed by that joy.

I'd rather write about the great weekend my 16 year-old daughter had when her aunt and grand parents came to visit,
than her losing it in the car today and attacking me while I was driving on the freeway.

I'd rather talk about the wonderful help we are getting through Easter Seals, 15 hours of in-home ABA than her attacking and biting a student at her school. The ABA costs us $100 week in co-payments, well worth it.

The state of California requires medical plans to cover autism treatments. Not everyone is pushing our kids aside.

Unknown said...

Ian, talking about the good times our children brings us is a good thing to do for all concerned. It is also necessary to acknowledge the reality of autism disorders. Otherwise we are doing a disservice to our children who suffer from autism disorders. I do not suggest that EVERYONE pushes our children aside. The topic of my post, and several other posts, is Autism Speaks and its actions in pushing aside the intellectually disabled side of the autism spectrum.

Anonymous said...

@Ian, I have no problem with people sharing positive stories, experiences and the progress of their children on the spectrum. Of course this is wonderful. What I have a real problem with are the parents who post on a daily basis that there is absolutely nothing wrong with autism and their children. That is, quite frankly, ignorance and denial at it's worst. Should the seizures also be celebrated? How about the awful mitochondrial dysfunction many have that make them so ill? What about the extreme self stimulatory behavior that interferes with their learning day in and day out? I hate to be blunt to these parents but their children are brain damaged and believing this is perfectly ok and should celebrated is sickening.

Additionally, Autism Speaks has not helped whatsoever in helping to find any sort of solution and it has become very apparent that they are simply a money making organization who does little in the end for the children. The ridiuclous people who walk and raise money for them are nothing but sheep.

Ian MacGregor said...

My apologies Harold, I totally agree we need to give the entire picture of Autism. I think it is in our nature as parents to write more about the good times than the bad .I notice more posts of your good times with Connor walking along the St. John than the problems you no doubt face daily.

We have struggled to find services for her, and often found the service did not cater to the most severely affected, or was very much outside our budget. The agency which is supposed to help in this regard, the regional center, has been next to worthless.

Easter Seals is a major change from the norm, a ray of hope for her and us her parents.

Astrid said...

While it's good that research is being done on meds that treat some of the core s ymptoms of autism, I don't think it's a good idea to exclude autistics with intellectual disability from research. It's not like they don't have the core autism symptoms (well, some don't because they're too severely ID to exhibit certain symptoms). By the way, hav yeou been able to look into what these core symptosm they're wanting to treat are? Do they mean stuff like social witdhrawal and insistence on sameness, or do they more fouc son sensory processing issues?

Unknown said...

I'll still say that Autism Speaks has done the back-breaking work to help many children with autism, from all over the spectrum, which is why their good advocates, such as Judith also represent all of the spectrum.

However, regarding this program, I'll also say that it's a vain attempt, born of a simplistic faith in the medical model of diagnosis, which is really just a veil for discrimination.

Eric Larsson, PhD, BCBA-D