Tonight is my final presentation of the 2012 Autism Awareness and Understanding Tour. Earlier today I drove to Washington, Missouri to give my police presentation and on the 50 mile drive I was thinking about all the stories I heard from parents on my journey and I heard the same story in almost every city and I began to get angry.
My dad told me that the end of this journey is the start of the next one, or something like that, and I think he might be right because this story I kept hearing is one that should not happen. What story am I talking about? At least one set of parents at each city I was in said something like this, "Yeah, after the diagnosis we didn't know there were any services for anything autism and that we were simply told, 'good luck.'"
If I'm not mistaken, I do believe the year is 2012, isn't it? If that's the case, why is there still this void? I am at a loss as to how a doctor can give the diagnosis but then not let the parents know anything else. Could this be one of the reasons why so many parents are hesitant to inform their kids, or school for that matter, that their child has Asperger Syndrome? What I mean by this is that if the doctors simply say "It's Asperger Syndrome... Good luck," what will the parents take from this? And, if the doctors say their child is on the autism spectrum, then the parents only hear the word 'autism' and what conclusions can they draw?
I did a radio interview yesterday and the questions McGraw Milhaven asked me were great because he focused on hope, and I was able to mention that we are raising the level of awareness and he then mentioned that so many people only think of "Rain Man" when the word autism comes up. That is the image a lot of parents have in their minds. Now, if one of those parents gets informed that their child has it and are not filled in on the fact that autism is a spectrum, and that there are therapies, and that a diagnosis is not a prison sentence, then perhaps this void can be avoided.
As TouchPoint's public service website says, "Sooner Equals Better." Time is of the essence, but too many families fall into this post diagnosis void of no info, no services and no hope and it most certainly does not need to be this way.
Again I ask, how is this possible? How can doctors inform the family and then send them out the door without any info of what the diagnosis means and the next step of action? If I had just heard this one time I would say that it was an isolated incident, but at every stop on my journey I heard this story. How? Why?!
When I arrived home on Saturday night I did a video blog entitled "The Checkered Flag," but once again I feel as if the green flag is flying because the race to spread awareness is a race that can't be lost. I have sat back and thought that the level of awareness was to a point that we could now focus on the understanding aspect, but from what I heard on my 8,900 mile journey, this isn't the case.
Maybe working on awareness is something that will always be needed and maybe we will never achieve 100% awareness but this is something I am dedicated to. The post diagnosis void is a dark place filled with hopelessness and a feeling of being lost. It doesn't need to be this way, and if the world's awareness of the things people on the spectrum are capable of and the fact that there are services beyond the doctor's words of "good luck," then maybe, someday, we can conquer this void and families will no longer be battling the myths, stigmas, and fears of the autism spectrum but rather be better equipped and have the knowledge to know what the autism spectrum is. Yes, the green flag is out and the race on to win the battle against the VOID!