Chicago Tribune article about me and Wrong Planet

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'Autistics don't want to be cured'

We interrupt this series of "autism recovery stories" to bring you a different perspective on the topic from Alexander Plank (left), a college student and founder of Wrongplanet.net, a popular web community for those on the autism spectrum.

Alex, 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 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 Alex, a film and video major at George 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. Alex, 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?

Alex: 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?
Alex: "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?

Alex: "(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 Johnny fell off the pier' or "ever since Katie 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?

Alex: 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.

Alex: 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?
Alex: 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?
Alex: 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."

I was in full agreement, and loving your answers until I got to here:



That's where you lost me. What do profoundly autistic behaviors have to do with abused children? My son has those symptoms, but he is not abused. He mainly has those kinds of behaviors when he's trying to communicate something, and no one's listening.

Don't get me wrong, I'm not condemning Alex at all. I know that those kinds of questions are really, really tough to answer on the fly like that. I have personal experience with severe autism, and I'm not even sure how I would've answered that question. I think I need to come up with a good set of comebacks for what i like to call the"golden question". Everyone who is pro-cure throws out the question about self injury, fecal smearing. I was just really confused about what abuse had to do with those behaviors. Then again, DocStrange could very well be right, and the journalist twisted Alex's words to read something different than what he actually said.

I do think that misguided attempts to conform a severely autistic person into something that they cannot be increases frustration, and in turn increases self injourous behaviors. I think that those attempts could be considered abusive from the autistic's POV.

LadyMahler, I SO understand the "cookie fell apart, now it's inedible" meltdown. lol I think it is sad, but I'm sure that people think it's sad when I have a meltdown over insignificant routine changes, too. It always seems so unimportant later on, but at the time something so minute can throw my world into a tailspin.

I was in full agreement, and loving your answers until I got to here: