Tuesday, 03 May 2011

• The Problem with "Different, Not Less"

  
  

  

  When I saw the Temple Grandin, HBO movie, I, like many other people, quickly adopted the phrase “Different, Not Less.” It’s such a powerful statement.

  Completing the Spectrum

  If you’ve followed this blog for any solid amount of time, or followed me on Twitter or Facebook, you know that I’m a rather large endorser of understanding and acceptance… the idea that those with Autism can be better served by taking the time to understand them and the spectrum of Autism itself.

  Early on, as I tried to piece together all of my thoughts and ideas into this “Understanding and Acceptance” campaign that has really taken off, I began to realize that there is an inherent danger in trying to “normalize” Autism too much.

  Different is not special

  
  

  The danger is this… different doesn’t get insurance coverage. Different doesn’t get sensory friendly movie times. Different doesn’t get services until they’re 18, much less into their adult years.

  I recently wrote about the pitfalls in defining Autism which touched on this, as some parents tried to persuade me that “disorder” was too negative to use and that we should find a kinder word.

  It really bothered me that these parents were essentially hindering their own chances at getting the help they so desperately needed.

  Backlash against PBS and Autism Now

  I’ve been reading on Twitter how some people are quite upset at the statements made during the six part series and understandably so, some statements were a tad harsh.

  But at the same time, we’re trying to get the world to wake up, stand up and take notice. Not just of how great people are even though they have Autism, but also, of just how hard it can be.

  Let’s be honest, a 6 part series on Autism that paints everyone as a savant, or perfectly capable independent functional part of society… won’t do much to raise proper awareness and certainly won’t go very far in helping us parents explain to other people in the grocery store why our child is having a meltdown.

  It might not have painted a very pretty picture, but it wasn’t a false picture either. It just wasn’t “all encompassing” of the entire spectrum.

  The Talk and Holly Robinson Peete

  The Talk did a wonderful series on Autism itself, a 4 part series, airing on each Friday of the month of April. This was a very real and very honest look at Autism as well but it painted it in a nicer picture… certainly not as dark and dreary anyway.

  I haven’t found much of a backlash about it, no one seemed to be upset. Which is kind of funny I guess, because I half expected that perhaps folks with severely low functioning children might.

  But those people probably just felt more left out than anything, nothing really to get furious about and certainly not worth writing articles and filling up Twitter time lines about.

  Personally, I like to think of The Talk’s series as a nice Yin to PBS’s Yang… if one series can’t possibly cover all sides of the Autism story completely on it’s own, then why can’t two series split the task?

  The Whitehouse calls it combat

  Now, if the PBS series had upset you, then how do you feel about the Whitehouse’s plan to reauthorize the “Combatting Autism Act”? Is it really war they think they’re heading into?

  The legislation, first passed in 2006, tremendously expanded federal funding for autism, allocating millions of dollars to improve diagnosis, treatment and research of autism spectrum disorders.

  Really, that doesn’t sound so bad… so as a suggestion to President Obama, consider changing it’s name. Please.

  Conclusion

  Parents and even those with Autism that are higher functioning, Aspergers for example, are trying to fast and too hard to push passed understanding and going straight into acceptance.

  There’s a very real danger in doing that… those laws won’t be reauthorized, the insurance agencies will not cover any therapies or treatments and there will be no more services out there for you.

  I’m not saying that there is not a need for acceptance, there is. More of it… lots more of it. However, it has to be done properly and in due course. First, there needs to be understanding.

  Understanding is what makes the system work for you, not against you. People need to be aware of the stereotypes, people need to be aware of the really bad stories… because as much as we might not like how bad of a “picture it paints”, it’s not untrue.

  We can’t hide away the bad stuff in an effort to force everyone to accept people with Autism as just a little different. That simply will not work.

  Don’t try to call it something else. It’s a disorder. It really is, even if it sounds negative. Don’t try to hide away the stereo types of those not as fortunate as yourself…. those people need to be seen and heard, even if it’s not an accurate representation of what is in your life.

  My son, Cameron, is doing just fine and I have no reason to doubt his future at all. But I’ll never sugar coat Autism just so that people will have a warmer and fuzzier feeling a

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