Sunday, September 12, 2010

Boston Globe's Cheap and Dirty Misrepresentation of Autism and Autism Issues

In "Lessons on living with autism" Boston Globe columnist Joanna Weiss has presented without any contrary view, critique or informed context the views of the founder of the College Internship Program and its founder Michael McManmon on a number of autism related issues. In Weiss World autism is high functioning autism and Aspergers.  In Weiss World autism is not a medical disabilty at all, it is a social disability. It is the "autism" of Mr. McManmon who, according to the article, "probably" has Asperger's:

"For McManmon, self-knowledge came years after he founded the program. It was his staff that pointed out that he probably had Asperger’s, which explained his vast energy, his entrepreneurial skills, his trouble managing personal relationships. It also explained his interest in 1984 — when kids with social disabilities were getting deinstitutionalized — in finding ways to ease their transition to independent life."

Joanna Weiss takes a cheap and dirty shot at parents and professionals who seek to find cures for autism without mentioning the differences in severity that make Autistic Disorder much more than social awkwardness for the majority of persons who suffer from the medical disorder:

"The question of how to help them isn’t flashy, controversial, or celebrity-studded. That may be why far more attention goes to the torrid debate over autism’s causes, the hunt for ways that the disorder can be “cured.’’

The staff at the College Internship Program chafes at the notion that autism is something to cure or defeat. A diagnosis is a piece of your identity, says the program’s founder, Michael McManmon. His philosophy centers on self-knowledge. “If you understand who you are and what makes you tick,’’ he said recently, “then you can alter it and you can fit into the world.’’

So there you have it. For Michael McManmon, who "probably" has Asperger's , and for Boston Globe columnist Joanna Weiss who offers his opinions without contrary perspective or context, "autism" is just a social thing.  Questions about cause and cure of autism are torrid and flashy bits of celebrity studded nonsense. They are not questions that agonize parents of children with actual Autistic Disorders  who live with their child's self injury, danger of being lost from ordinary life realities like automobile traffic, or the intellectual disability which characterizes the "vast majority".  In Weiss World those with "autism" do not  end up living in institutional care. For Joanna and Michael autism is just some social awkwardness that can be addressed with a journey of inner discovery.

From this article it seems that Micheal McManmon might or might not have Asperger's.
From this article it seems that Joanna Weiss might or might not be a fair and competent journalist.

13 comments:

Autism Mom Rising said...

This stuff bothers me too. I don't mind articles that tell about people with HFA. I do mind articles that represent them as all their is, just as many with Aspergers are bothered by awareness campaigns that only show the LFA, tragic aspects.

Ultimately, I had to let it all go. I can't do anything about people like this and worrying about it distracted me from what I need to do. I give people like you all the credit in the world - people who can stay on this stuff and not get completely lost in it. You do great work Harold.

farmwifetwo said...

Emily - A life less ordinary and also over on Countering A of A, did the same lately and I finally found my temper.

My eldest is one of them... he will always be autistic... I have NEVER requested a cure for him... WHY?? B/c it's managable, he will be independant.

Yes, my little man is adorable even at nearly 9. Laid back, easy going, smart, and barely verbal without a visual (word or pec) prompt and even then he has difficulty. That needs a cure. Why anyone thinks that having to live in care - and then we're shitty parents for even having those thoughts, but I don't know about you... living forever is not an option at this time - That is NOT ok, that is NOT wonderful, that is NOT glorious and it is NOT his older bro's responsibility to look after him when I cannot. Older bro is entitled to a life too.

Anonymous said...

Emily, Wombles, Chew and all those other freaks (because that IS what they are) really have no clue Farmwife. I wouldn't waste my breath.

As for this article, not suprised it's coming out of Boston. Some of those most strange and ignorant people in the world of autism are there.

lifewithasperger said...

I agree (strangely)this article should not have presented HFA and Aspergers as the only level of Autism. It rubbed me the wrong way too.

THAT IS NOT, however, what Emily and Kim did. Not even close. See for yourself.

http://daisymayfattypants.blogspot.com/2010/09/asking-aspie-cure-question.html

http://kwomblescountering.blogspot.com/2010/09/loving-our-children-focusing-on-cans.html

Anonymous said...

Oh.. Emily Willingham or whatever her name is. The woman clearly sounds like she has sort of autism herself. Her tiresome crusade to let the world know that SHE is an expert because SHE has a huge background in science is laughable. The woman sounds like a hermit who has a couple of autistic kids and needs to convince herself that she is happy about that on a daily basis. A phony and an oddball is what she projects. This particular group of moms who can't stop bashing anyone who doesn't embrace autism in all it's glory really seem to have a similar profile. Really homely (sorry but it's true), odd and insecure.

lifewithasperger said...

Maybe, but they're secure enough to use their names and not hide behind "Anonymous".

Anonymous said...

I think it's pretty easy for high functioning autistics or parents of high functioning autistics to easily want to accept them. They don't live with the day to day struggles of severe autism. I think individuals such as Ari Ne'iman and others like him have divided people so much on this issue by claiming to speak for all autistics. The divide will never end as long as people try to continually speak for all.

Emily said...

"The staff at the College Internship Program chafes at the notion that autism is something to cure or defeat. A diagnosis is a piece of your identity, says the program’s founder, Michael McManmon. His philosophy centers on self-knowledge. 'If you understand who you are and what makes you tick,' he said recently, 'then you can alter it and you can fit into the world.'"

While I won't dispute that autism is part of a person's identity (as long as one accepts the concept that a pack of neurons is one's identity, but that's a whole different discussion), I take strong issue with anyone's "chafing" at another person's attitude about how to approach autism. And I "chafe" at the implication that (1) all autistic people can be helped to understand who they are and what makes them tick (although that would be an admirable goal) or that (2) any of us should alter significantly to "fit into the world." Cannot we also argue for a world that makes room for all?

This article does a disservice in many ways, especially in presenting only the level of what is perceived as "highest functioning" autism and couching it only as a package of social issues. That's not my son's autism, and it's undoubtedly not the experience of many parents and autistic people. If only.

By the way, my name is, in fact, Emily Willingham.

A Different Anonymous said...

Has "anonymous" ever actually read that blog "A Life Less Ordinary?" It would seem not, because the blog and its author have been completely misrepresented.

Anonymous said...

I have read Willingham's blog and her theme does seem to focus on acceptance and preaching it quite often in her own way. Good for her. I for one would ike to see something developed that would recover the chidren more fully so they don't have to live with self injurious behaviors, the frustration of being minimally verbal and having to live in a group home for the rest of their lives. Maybe that won't be Willingham's kids but the fact is that life of hell will be the real word for many. As for Kristina Chew, her entire theme seems to be just accept and life wil be easier for all. She's in a for a rude awakening if she really believes that. Just wait until her child is 21 and no one is required to take him all day. I can see where Farmwife found her temper with some of them.

-Barb

Emily said...

Barb, this is Willingham here. I focus on accepting my own child. My blog focuses a lot on parenting in general, on our specific issues, on science as it relates to autism, on homeschooling, and yes, I talk about how I accept my autistic son (only one of my children has autism as most people here see it defined). I don't, however, preach that I know of, and if it comes across that way, my apologies. I'm not interested in sounding preachy.

I was quite careful in my last post to say, clearly, "Other parents with different circumstances, different children, will have a different conclusion. They might embrace the 'cured' version of their child for compelling reasons, reasons like wanting to hear their child's voice, see their child feel calm and peace, know that their child has a chance at an independent life. But I do not because that's not how my boy on the spectrum is."

The point of that, as I thought was clear, is that our experiences differ, and so do our attitudes, needs, and perspectives. I don't have a problem with that, so why does anyone have a problem with my perspective? Indeed, I agree wholeheartedly with the following: "I for one would ike to see something developed that would recover the chidren more fully so they don't have to live with self injurious behaviors, the frustration of being minimally verbal and having to live in a group home for the rest of their lives."

FW2 comes to my blog frequently to comment and often expresses herself strongly. She's welcome to do so, as always, as are you. But I think I have "anonymous" turned off, so you're going to have to come up with some other nom d'web.

MyTruth said...

Back-and-forth: if a person's made it to college, then they are not 'handicapped' by autism, in my VERY relativistic opinion... kind of lie a visually impaired driver not being blind.

It is sloppy journalism to present one slice of any identified spectrum without at least pointing out that it has ranges. Possible exception if the piece was written for a professionl journal.

I've been hanging onto my calm when dealing with the ASD/NT interface by repeating: they have a diagnosis, they have a diagnosis... and it's wierd: when presented with that, many people go from trumpeting their label to "am not..."

Anonymous said...

While it is true that the spectrum of autism is very wide, the point of the article referenced in the Globe is that for a very specific part of that spectrum (as well as ADHD, Dyslexia, and other different learning disabilities), help is possible, specifically with organization and social understanding, things that can make or break just about any part of a persons life. I think you all might be taking this too literally.