Day 1 2016: A is for Advocacy

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A is for Advocacy .

Today is World Autism Awareness Day.  Coincidentally, it is also the day that I will be speaking in front of a very large audience at a Tedx Event stealthily addressing the first step necessary in tackling the mountain for disability advocacy as whole in society. About a year ago I realized that I was advocating my way to an early grave.  The individual battles, bureaucracy and other professional’s personal agendas were getting to be insurmountable.  So I stopped.  I don’t think I have looked at a piece of paper with either child’s name on it in almost a year.  I did it out of self-preservation….I did it as a life insurance policy because I have to live one day longer than A2.  My real life insurance policy runs out in 7 years so I either needed to up the ante and increase my red meat consumption to run out my clock or back away.  I chose back away.  And during that time a metamorphosis occurred.   I realized that it may be much easier and much more impactful to change the world around my children through advocacy rather than to fight the good fight one arduous and marginally successful battle at a time.  And if you know me personally, I think you saw it happening too because people are believing in my movement…quickly.  Very, very quickly.  It’s working already.

Advocacy for those with Autism and other developmental impairment is  becoming a trickier and trickier thing.  The landscape of Autism has changed significantly in the last 25 years.  The prevalence rate has hopscotched up from 1:2500 to about 1:68.  That’s a 600% increase.  One reason may be is that as professionals become more familiar with ASD it has been more frequently diagnosed.  While this is true, conventional wisdom tells me that this is only a small part.  Let’s face it…how many non-verbal, incontinent pre-adolescents did you know growing up?  Because at one point in the last few years I had 2 living on my cul-de-sac.  This is not counting the other 8 with varying degrees of ASD who live within a 3 block radius.  The prevalence rate has risen at the same time computers became a common household item and paying for the internet became yet another utility bill.  For the first time ever, previously isolated families and those with disabilities had a way to connect with a community and also gain information about treatments, supports and advocacy.  I have learned more about what to do for my children through the Internet than any professional has ever taught me.  People who were diagnosed (or perhaps misdiagnosed) 20 years ago are finding each other and forming a neurodiversity movement.  It is for these reasons that I believe the disabilities rights movement has the potential to be the swiftest civil rights movement in history.  However, I also believe that it could be one that never fully comes to light for the same reasons.  Advocacy and fighting for individual rights are actually very personal experiences.  We all have our stories…and some frankly would make most people’s ears bleed to hear them.  What is right for one individual may not be whats best for another…and the reasons vary.  Mix this in with hypervigilant parents, hypervigilant self-advocates, a fragmented healthcare system and school systems who may have been better equipped to deal with IDEA at a time when they might see 1 kid with ASD in their whole district rather than 20 just in one grade and we have a recipe for a whole system collapsing in on itself with the casualties being the very people we are advocating for.  (**Internet Troll Disclaimer:  REEELLLAAAXX…..I’m not talking about YOU specifically….I have included other hypothetical situations…as well as many I did not….).  As a group, I am challenging everyone  to think about the common threads rather than the details.  Go talk to an anti-vaxx parent…and then go talk to a pro-vaxx one.  Have a chat with a parent who paid for 40 hours a week of ABA therapy that was ultimately successful for their child…but also talk to an adult with ASD who had ABA back in a time we called it Lovaas and there was no such thing as “errorless learning”.  Talk to the retirement aged parent you don’t see because they are trapped in their house on lockdown with their adult child who is severely affected with Autism, violent, self injurious and an elopement risk but there is no funding to place them in a safe environment.  Then go talk to the Autistic adult who wants people to accept that people first language is harmful and ASD is not something to cure.  Ask them all to talk about a time they needed to advocate for themselves.  And listen closely.  Self preservation and love are both innate.

It’s Autism Awareness month.  Let’s raise the RIGHT kind of awareness shall we?  We can be a united front even when we have our own agendas.  He HAVE to be a united front even when we have our own agendas.  The future as society as a whole is depending on it…..

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