I breathe autism.
I eat autism.
I drink autism.
I live to fight it and to win the battle.
So why am I so speechless? I should be celebrating today’s news and jumping up and down with joy. Why do I feel so confused when we’ve kicked autism in the butt so early in the game?
Today, May 19, 2010, marks the end for us of two long years of early intervention under the guidance of the University of Washington Autism Center. We moved across the country in 2007 so we could get on a waiting list to obtain an early diagnosis for our son, Frankie, and to learn the next step for this lifelong journey. Today, we got more than what we had been hoping for; besides a tentative label for his forehead reading: PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) we also got the news that he was no longer considered autistic, per se. In order to explain this better, we were told that if our kid had cancer, he would now be in remission – so, we needed to watch it, keep it in check, be aware there could be a regression if a big crisis would arise, if stressful situations involving big changes or social challenges ever took place. But for now, it’s all good … it’s all too good.
So, if this analogy is right, does that make Frankie an autism survivor?
Personally, this information creates a big paradigm shift for me. I have spent the past 30 months learning to accept the reality of Frankie’s autism and brainwashing myself to deal with it for life. Ever since we contemplated the possibility that our youngest son had autism, I was scared of the unknown. I made it a point to know. I promised myself that if I knew enough, or in my case, more than enough, I wouldn’t be scared to take on the fight. I’ve always believed that ignorance holds you back and that knowledge is power – so that’s what I did: I learned. Autism became my thing – I learned to listen, I learned to process, I learned to research and I became a pro at it. Name the website of the month, I knew it. Name the event of the week, I knew it. I was informed and on top of it. I gave the early intervention of my child the highest priority in this family. Our lives revolved around the parent training sessions, the intervention schedules, the evaluations – everybody was on board and there was no other way. No long vacations were allowed; we had sessions in the middle of snowstorms, hail and rain – not a minute went to waste. The efforts paid off but the reward was more than we bargained for.
Then, why on Earth am I so shocked at what I heard today?
Perhaps I’m shocked because I never really expected to win the battle?
Perhaps because now I’m left without a purpose, without a mission?
Maybe because at one point this became more about me than about Frankie?
Is it because I feel that we belong in the autism community and we will have no identity left once we are out?
I’m not sure of the reasons of why I feel so surprised at what the future holds for Frankie. The truth is that I just wished for him to survive and now I’m told that he can thrive and this is hard to process. I am, once again, scared, but this time I’m scared to take on this new reality and truly enjoy it because it seems so unreal. Could it be really happening? How did it happen? What did we do differently? Why can’t this be the outcome of every family living with autism? What is that magic ingredient we found without knowing?
So many questions are dancing in my head and are making me dizzy but one thing remains very clear to me; the sky is the limit when you reach for it and there is always a light at the end of the tunnel. Our tunnel was shorter than other families’ tunnels but it was indeed a tunnel and it was very dark. But the light at the end is so bright, I might need to wear my shades all day long!
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.