WrongPlanet.net Founder and ASAN Member Plank in Chicago Tribune Blog

[Guest guest]

http://featuresblogs.chicagotribune.com/features_julieshealthclub/2008/04/autist\

ics-dont.html

Originally posted: April 2, 2008

'Autistics don't want to be cured'

[image:

newhead1]<http://featuresblogs.chicagotribune.com/.shared/image.html?/photos\

/uncategorized/2008/04/01/alexnewhead1.jpg>We

interrupt this series of " autism recovery

stories<http://featuresblogs.chicagotribune.com/features_julieshealthclub/autism\

_recovery_stories/index.html> "

to bring you a different perspective on the topic from

Plank<http://www.alexplank.com/>(left), a college student and founder

of

Wrongplanet.net <http://www.wrongplanet.net/>, a popular web community for

those on the autism spectrum.

, who has been diagnosed with Asperger's takes issue with the whole

notion of " recovery " because he believes parents of autistic children need

to love them for who they are. It is not a " disease " he says. It is simply

how these children are wired.

In a comment on my blog he wrote that " parents who resort to unscientific

and unapproved medical treatments with the intent to 'cure' their children

are not only wasting money. These parents are also putting their children's

lives at risk. "

He then linked to this somewhat dated 2005 news

article<http://www.msnbc.msn.com/id/9074208/>about a 5-year-old child

who died during a treatment known as chelation

(which removes heavy metals) due to a drug mix-up. (Yes, chelation can be

dangerous when it's done wrong, but shouldn't that mean doctors should learn

more about it rather than ban it altogether?).

Anyway, when we talked, I found , a film and video major at Mason

University, to be extremely articulate--he speaks about the topic of

" neurodiversity " at conferences and other events--and a passionate defender

of the rights of autistic children.

He has a girlfriend and is interested in computers, writing and acting.

While Plank had difficulties with communication as a young child, he is

quoted in a publication called " The Autism Perspective " as saying, " I didn't

think of it much; I did have friends. I had no problem with eye contact or

socialization. "

This is something many parents who are trying to treat their autistic

children with perfectly safe interventions, such a a gluten and casein-free

diet, can only dream about. , meanwhile, has no idea what it's like to

raise an autisic child.

Still, neither do I. And because the comments on my blog represent just the

tip of the iceberg on the recovery debate, I promised to let him have his

say, even though I don't agree with many of his statements.

For example, he says one of the primary misconceptions perpetuated by the

media, he says, is that " Autistics want to be cured. "

" Most autistics, in fact, do not want to be cured because they've already

accepted autism as part of their personality, identity and lifestyle, " he

wrote. " You may not understand why anyone would want to be diagnosed with a

psychiatric condition but even homsexuality was listed in the DSM

(Diagnostic and Statistical Manual of Mental Disorders) as being a disorder

at one point in time. "

He also wanted to emphasize that he belives " parents should be doing all

they can to improve a child's ability to cope and communicate in the world.

" For instance, spending hours trying to help your autistic child learn

important life skills is a good thing. Children with autism need to learn

what's socially acceptable and they frequently have a much harder time

learning a lot of the things that neurotypical children alreay understand.

This means a parent needs to have more patience. Autistic kids do have the

ability to learn and improve without a " cure. "

Here are some excerpts from our interview conducted via telephone.

*Me*: Why did you start Wrongplanet.net?

**: Back in 2004, (my co-founder and I) thought it was ridiculous that

there were no good online resources. Some Web sites said (those of us on the

autistic spectrum) need to form our own island and not deal with " normal

people' but that's not really practical and if we did, we'd have just as

many problems. The other resources were parents talking. No one wanted to

talk with people who actually had Asperger's or autism. It was weird that I

couldn't find anyone else to talk to about something that supposedly affects

all these people.

*Me*: What do you see as one of the biggest problems?

**: " There is so much negative propaganda put out there to convince

people to help the " poor autistic kids " when in reality, all it's doing is

creating an environment where parents don't see kids as human, as they

should. They don't value their lives. "

*Me:* What's the harm in trying a different diet to alleviate some physical

symptoms?

**: " (In searching for cures) you're saying there's something wrong that

needs to be fixed but people can't change the way they are. There's no harm

in having a different diet. And I know people allergic to gluten. But in

general, people with autism do improve, but not because of what parents

think (they're doing). Before vaccines were a (supposed) cause, it was 'ever

since ny fell off the pier' or " ever since was in a car crash.'

They always had an event. Researchers have found in reality, these

correlations that people say exist are not the cause of autism improving or

getting worse. It would have happened anyway. It's our innate proclivity to

find patterns even when they don't exist. (But) there's a harm in trying to

find some cure that doesn't exist when they should be accepting of their

children for who they are. My parents were very supportive of the

differences I had and helped me to succeed.

*Me*: (asking the same question again - I can't quite grasp the

anti-recovery concept): If they do have symptoms, what's wrong with trying

to alleviate some of them?

**: If there was some sort of implant that would make it so I could

interpret people's body language, then yeah, I'd know body language but I'd

still have same thought process. The way my brain works is inherent to me.

It wouldn't be curing anything. The whole idea behind neurodiversity is that

people's brains work differently. If autistic tendencies were't in people,

we'd spend all of our time socializing and not doing anything. Many

brilliant people have autism and when you talk about wiping it off the map,

it's damaging to people who feel it's part of their identity. "

*Me*: Some parents who pursue biomedical or alternative therapies say it's

no different than trying to treat cancer.

**: Cancer is a terminal illness. No one with autism dies and they don't

necessarily have physical symptoms.

*Me*: So you wouldn't want any of your " symptoms " treated?

**: I don't like getting overloaded, but at the same time, how would I

take away something that is essential to who I am without completely

changing myself and taking away positive attributes, like my intense focus

on computers?

There are plenty of people without autism who do amazing things but that

diversity is a good thing.

*Me:* What about the extreme cases, such as kids who are self-injurious,

banging their heads on walls or smearing feces?

**: Who would argue that's not a bad thing? But not everyone with autism

does that. And a lot of the time some of the symptoms of autism are similar

to symptoms children get when abused. Child abuse does result in children

who will not talk and refuse to do certain things.

" When you see the whole picture of autism it's much more hopeful than a lot

of people would have you believe. There is hope. Autism doesn't take away

the child, it just takes away ability to communicate with child. "

--

Ari Ne'eman

President

The Autistic Self Advocacy Network

1101 15th Street, NW Suite 1212

Washington, DC 20005

http://www.autisticadvocacy.org