I speak for myself

This month is supposedly Autism Awareness month.  Believe it or not, I have not been keeping very in touch with the Autism Community over the last few years.  I've been very busy with being married and having two kids and being a student.  However for several years after being diagnosed, I spent a lot of time participating in the autism community and will always be grateful for the welcome and acceptance I enjoyed there.  I could just be me.  Of all the books on autism that I've read, those that have helped me the most were written by autistics to share their own experiences and coping strategies.  Books written by people like that helped me start the process of rebuilding my sense of self worth and sense of pride in who I was that had taken a terrible beating by growing up undiagnosed and without services.

One of the things I learned in the autism community was that there was only so much I could trust the parts of society that were supposed to be committed to helping people like me.  There are scientists who claimed that the bullying of autistics didn't matter because autistics didn't have feelings.  There were doctors who were refusing to refer autistics for services because they believed that no one could be autistic and have emotional attachments to their parents.  There is a problem in society of violence committed against autistics by their parents, care givers, and the police.  There are members of the public who didn't know the difference between autism and Anti-Social Personality Disorder (ie psychopath murderers and your worst nightmare used car salesmen) and are willing to believe whatever fears pop into their heads about autistics.  Finally, there are organizations who dedicate themselves to keeping people like me from ever existing in the first place and use fear mongering and demonization of people like me as a fund raising and lobbying tool.  To use an example from just a few years ago, I quote:

"These families are not living.  They are existing. Breathing – yes.  Eating – yes. Sleeping- maybe.  Working- most definitely - 24/7. This is autism. Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future.  This is autism." (emphasis in the original)

Hopefully it should be obvious where the problems are with this statement, the likes of which Autism Speaks has a repeated history of making.  My life and the life of my family may have been more difficult due to autism.  The life of my son is already becoming more difficult because of autism.  There is a whole spectrum of how severely autism affects the daily life of those who have it.  Some need many more services than others.  But we, collectively, are not the embodiment of living hell- forcing our families to live as lifeless zombies in total fear and despair of the tragedy that we might perpetrate on them at any moment.  I'm actually a husband and a father.  I'm an employee in a customer service company.  I'm a student.  I'm also autistic.  Anyone whose perception of autism comes primarily from statements by organizations such as Autism Speaks will be less likely to be willing to associate with me, hire me, or give me or my children a fair shot at life's opportunities because they will be in fear that we will suck them into our own private hell that I and people like me will inflict on the world until people like me stop existing because some cure will be found so that my personality and that of every other autistic person will be erased to the extent their personalities were caused by autism.

I had been willing to call a truce on criticizing Autism Speak's behaviors because while I participated in the autism community online I saw them make attempts to make outreach to our community and they even hired their first token autistic, John Elder Robison, on a scientific board which in theory should help guide them in their work and public presentation.  I figured they were getting better.  It turned out, after several years of association John Elder Robison resigned because he felt that he could no longer remain associated with them when they continued such behaviour.

If you want to support Autism this month, support autism acceptance, not simply awareness.  Please don't donate to Autism Speaks or help them spread their vision of autism.  They are trying to do a good thing and they do some good, but freakishly little of the money donated to them actually is spent on helping actual autistics or their families (4% in 2010 for example).  Instead they'd rather spend money on genetics and causation research (which is useful in the long run, but not to me).  They aren't mature enough in how they present their message to avoid doing harm to autistics while doing their advocacy work.  They might speak for those whose families lives are worst touched by the difficulty of obtaining services and have particularly harsh expressions of autism, but they don't speak for autism itself, which they'd rather simply didn't exist.