Tuesday, March 29, 2011

Loving Lampposts: Accepting and Understanding Neurodiversity

When my son Leo's autism comes up in casual conversation, the person I'm talking with usually reacts as follows: either they have a relative or close friend with a child with autism and want to talk about it, or they just love that Temple Grandin movie and want to talk about it.

In both cases, I've longed for a more appropriate autism movie to recommend, one that explores the complexity and diversity of autism experiences beyond one brave, famous woman's challenges and successes, one that reassures and educates families of children with new autism diagnoses, one that  immerses the viewer in the autism worldview I believe best serves our community: neurodiversity.

That film is finally here. It's called Loving Lampposts. The director, Todd Drezner, showcases the varied faces of our community: the advocates, the adults, the loving parents, the beloved children -- plus the professionals, the doctors, the researchers, and the gadflies.  Loving Lampposts takes the oft-repeated phrase "if you've met one autistic person, you've met one autistic person" and gives it life. You need to see this film. And if you want to help others better understand autism, you need to recommend Loving Lampposts to them.


Loving Lampposts Trailer from Loving Lampposts on Vimeo.

Steve Silberman of Neurtribes has posted an interview with the director, Todd Drezner, for those who want to know more about the film's mission and genesis.

Loving Lampost's parent, adults autistic, and professional interviewees (there's often overlap) include Nadine Antonelli, Kristina Chew, Jim Fisher, Estée Klar, Roy Richard Grinker, Paul Offit, Paul Collins, Ralph James Savarese, Simon Baron-Cohen, Phil Schwarz, Dora Raymaker, Stephen Shore, Sharissa Kochmeister, Elizabeth Avery, Johnny Seitz, Barbara Moran, and Kassiane Sibley. Several of whom are TPGA contributors or interviewees. It's a lively crew, with a lot to say -- much of which I'm hoping viewers will find reassuring as well as provocative.

Loving Lampposts covers a lot of ground. A lot:

What is autism? 
  • Autism is a triad of impairments: communication, social behavior, and repetitive and stereotyped behaviors, according to Roy Richard Grinker.
  • Autism makes parents fret because it's in the DSM -- it sounds like something is wrong. And no one can say for sure exactly what it is.
  • Autism used to be invisible, now you can find it anywhere. But, again, we still don't know what it is.
Why do parents seek alternative autism treatments?
  • Behaviors are challenging. But give them a label: autism, and they're terrifying.
  • Media treatment is generally hype and horror.
  • Parents initially think, "There must be a way that I can fix this!"
  • DAN! doctors such as Kenneth Bock and James Neubrander consider autism a medical, not a psychiatric diagnosis. Their therapies are not sanctioned by mainstream science -- but if you're a parent, they give you something you can do about your child's autism.
  • Alternative treatments often result in placebo effects. Parents really really want their children to improve, so they think they do. 
Is there an autism epidemic?
  • There's no such thing as a genetic epidemic.
  • Autism is not fatal. So why do people see autism, which is not contagious, as part of a medical crisis and epidemic?
  • Where are all the adults with autism? They're here already. We're primed to see autism more than ever before, but autistics have always been here.
Autism and vaccines
  • Parents really believe there's a link. Jenny McCarthy talks about parents being pressured into giving their kids lots of shots and not listening to their instincts. But she is not talking about real science, or evidence. She making recommendations based on how she feels.
  • The symptoms of mercury poisoning do not match those of autism (microcephaly in the former, tendency towards noggins of unusual size in the latter).
  • With flawed studies like Andrew Wakefield's and accusations of vaccine researchers being "pharma shills," Paul Offit says the funding is irrelevant -- what matters is the strength and reproducibility of the studies.
  • Omnibus Autism proceedings: the court ruled that there was no link between autism and vaccines, and that the experts who testified against the vaccines were "unsound" and "unpersuasive."
  • The families who believe in an autism-vaccine link are not going to have their minds changed by a court ruling. But is is clear that vaccines have not caused an autism epidemic.
  • Parent and writer Paul Collins says, "The appeal of a vaccine explanation is the same one that compels people to be interested in a murder mystery, which is that there's a direct cause. You have to figure out who done it. The complex explanations are a lot less satisfying. We want to say that's the moment it happened, and that's who did it."
Autism Acceptance and Understanding: Neurodiversity
  • What we're really talking about is how we think about our children. It's clear to the director that the medical model of autism [the DAN! model] twists that thinking, makes us only accept as successful behaviors that are "normal."
  • For a person with a disability, you just have to stop thinking about normal. Teach skills that help,  not skills that make them appear typical.
  • Everything that a child with autism does, they do for a reason. We may not be smart enough to figure out what the reason is, but we should at least try. It's not random.
  • Acceptance of an autism diagnosis is an active, not a passive understanding.
  • Acceptance isn't about giving up, it's about understanding how your child sees the world -- that is neurodiversity.
  • David Kirby disparages neurodiversity, equates it to the way "homosexuals feel they are just different" too -- claims that neurodiversity is championed by "high functioning" autistics, and questions whether those advocates have the same disease as the children he writes about. He needs to watch the rest of this film.
  • As Dora Raymaker asserts via fluid and nimble AAC communication, it is important to understand that difficulty in thinking and difficulty in speaking are not always paired.
  • High functioning vs. low functioning autism -- does it even matter? What difference does the distinction make for day-to-day living?
Our community needs Loving Lampposts, needs its forthrightly positivity-drenched testimonials to the differences that define us all. I'm so grateful it's finally here. And I hope every person who sees it takes the words of interviewee Stephen Shore to heart: "The potential of those of us with autism is like anyone else's: Unlimited."