Tuesday, December 4, 2012


I am not sure how to react to the news that my children don’t have Asperger Syndrome any more.  Should I celebrate a cure?  Hmmmmm.  Maybe not yet.

I remember when we finally reached a diagnosis.  After years of knowing something was just not right, being told not to worry because my children were not CLEARLY autistic, I finally had a diagnosis, a WORD, a NAME that explained their behavior, and so much more. Thankfully, the diagnosis also lead us to OT, SPEECH, group and individual psychotherapy, medication, numerous books, websites, meetings, lectures, support groups and friends.  I learned to work with their gifts and to accommodate their deficits.  I learned to ameliorate the problems caused by the sensory issues.  We have come so far. 
About 5 years ago, we took the kids to Disneyworld.  It was a nerve-wracking adventure.  I knew a bit, had a “special needs” pass for the rides, and prepared the best I could.  We managed to have fun despite their issues. Sure, Meredith spent the entire character breakfast UNDER the table, but I got it.  I understood why and wasn’t surprised.  Neither kid would look at or talk to a “Princess”.  No problem.  Lily needed to spin a bunch and cry even more. I understood and we went about our business and had fun within the constraints of our abilities.
This Thanksgiving, we went to London and Paris.  My children dealt with prolonged air travel, navigating the Metro and the Tube, time change, different foods, different languages and people, different smells and tastes, carrying their own luggage up stairs, not having ready access to internet and electronics, fatigue, and so much more.  The amazing thing was that they dealt with it all with very minimal fighting and fussing, with only minor meltdowns.  I was struck at how far we have all come.  I know with certainty that without our diagnosis of Asperger Syndrome, this would not have been possible.  Without the WORD and the NAME that lead to the education that led to the blueprint of the amazing brain that my kids have, we would still be serving the occasional meal under the table.  Without that NAME and diagnosis, we wouldnt have the proud identity that is now recognized by so many.
Our teachers currently put up with behavior that is normally not allowed in public school, because they get it too.  They look at my tiny Einsteins, and they appreciate the cool kids they get to teach.
So how do I feel about the peeps in charge making Asperger Syndrome disappear with DSM-V?  I have to ask why?  Why, when we finally have a NAME and a WORD that is recognized by so many, would someone go and delete it? When that NAME that can help so many find and understand the instruction manual that didn’t come with their child, but that has been communally written by so many caring parents, why would you banish the NAME?  Why?
I have to assume the reason ultimately is money.  I won’t get into that discussion tonight.  I will only say that obfuscation is not in the best interest of children with Asperger Syndrome.  DSM-V is not a new Bible written by the infallible.  It is, like all medical guides, written by humans.  My fervent hope is that other parents will have the opportunity to help their children the way I did.  I hope that parents in 5 or 10 years will have access to the resources that helped me and my family.  My prayer is that DSM-V doesn't harm the undiagnosed tiny Aspies of tomorrow.