Wednesday, May 2, 2012

It's Autism Awareness/Acceptance/Action Month Every Damn Day Here

Well, another April has come and gone. Another April that I tried to post something about Autism each and every day in order to increase AWARENESS, encourage others to take ACTION, and to continually push for my child's ACCEPTANCE.

I got a lot of comments on my Facebook page, thanking me for the little tidbits of info, the statistics, the facts and the myths and the shared stories- so in that regard, I did accomplish something.  And that in itself is important and great.  If just a handful of the people NOT living daily with Autism just told one other person something about Autism, then I feel like I did a small part of my job. I think a whole lot of folks are AWARE of Autism, with the numbers at 1-88 you would seriously have to be living under a rock to not be a little aware at least.

One thing that just appalls the hell outta me is just how much dissension exists within the autism world. I believe that each group representing persons with autism spectrum disorders have a valid approach to autism support. I have seen  Facebook wars over whether it should be acceptance or awareness, awareness or action, Autism Speaks is the devil, no, it's the best thing ever,  we want a cure, we don't want a cure, it's vaccines, it's not vaccines, it's maternal age, no it's not, it's better diagnostics...GAH!!!  People on the spectrum, or parents raising a child on the spectrum are at each other's throats! It makes me so sad that we all say we want basically the same things for our loved ones, yet we are quick to jump on someone else for their point of view- making us just as short sighted and judgmental as those we want to ACCEPT our kids.  How can our rallying cry be ACCEPTANCE! when we can't even accept our differing opinions?

 We can continue to emphasize our particular view of autism without attacking another’s point of view.  If you follow my blog or Facebook page at all, then you already know that I do not support Autism Speaks anymore, and yes I do believe that there are VALID concerns with vaccinations as  ONE possible cause for autism- IN SOME CHILDREN. I do not attack anyone else if they don't agree with me - I give examples and state what I believe to be a sound opinion, but I do NOT try and make someone else feel bad or stupid for their opinions.  I also believe there are other environmental and genetic causes- THERE CAN'T BE JUST ONE!!! That said- if the opinions are presented in a manner that is polite, not accusatory and certainly not calling me some anti vaccine nut job- well of course I want to hear them.  But unfortunately human nature makes me retaliate if someone starts ATTACKING me. Even though I know when we attack each other, we take away from our cause, and slow down progress.

Better diagnostics, actual increases to cure or not to cure- these are not the real issues. It;s time to stop fighting with each other and time to HELP each other- regardless of what we feel may have caused our kids' autism.  All parents who get the diagnosis in the beginning ask that question, What CAUSED this?!?! The fact of the matter is- THERE IS NO DEFINITIVE ANSWER TO THAT QUESTION YET! Not for every individual or family anyway. The "cause" ship has sailed- we are living with it daily and it's not going away. It might improve with time, it might not.  One thing is for certain, bringing each other down, being angry with others because they don't agree with us and bashing groups, individuals, therapies etc. is not going to help ANYONE.

 I have read a whole lot of interesting blogs, articles and opinions in the last month. Hell over the last  7 years! I LIVE to research and to look into other points of view. I did not agree with every single thing I read. I had some healthy debates. I had quite an interesting dialogue with a 23 year old young woman on the spectrum. It was eye opening, and I learned a lot. I did not wholeheartedly agree with every single thing she said- nor did she agree with everything I said- but I learned a lot from her. It was a very enlightening experience for me. (I asked if I could "interview" her for this blog, she respectfully declined and asked that I keep her identity anonymous)

Here is a short list of things we do know:

  • Many of our school systems are failing children with autism, not enough teacher's are educated about ASD's, and our kids are struggling. They are also being bullied and hurt, not just by other kids, but by the adults we trust them with. THIS MUST STOP.
  • There are not enough appropriate services and effective treatments for autism and the other diagnoses that often accompany an ASD diagnosis.
  • Children with autism grow up into ADULTS WITH AUTISM. There is a growing concern for the children that age out of school, who need respite care, who need assisted living communities, and who need programs to help them to be independent. The programs that are in place are few and underfunded.
  • Proper medical care and insurance coverage are not available for the all the ages across the spectrum.

 So yes- another April has passed- I can only hope that the people who live with Autism every damn day, who  eat, drink, breathe and sleep Autism can find ways to be a cohesive, thoughtful, HELPFUL group. We all have LOADS of information and can help each other more than anyone else! Those things up there ^^^ should be the things that unify the Autism community and spur us to not only make people aware, but to take action for BETTER, not for worse.