[caption id="attachment_249" align="alignleft" width="232"] Valeska Toledo is a graphic and web designer by profession, a special needs advocate by passion, and mother of a handsome and clever 7 yr old boy with PDD-NOS, SPD and Global Dev. Delay. Although she loves to design websites, nothing brings her greater satisfaction than when she’s helping parents navigate through the IEP process, recommending therapy and interventions, and training parents to advocate for their children.[/caption]
Welcome all to Autism Awareness Month – I often wonder what that means. AWARENESS – to become conscience, to recognize, to understand.
When my son was younger, shortly after we received his diagnosis of PDD-NOS (or high functioning autism for those not familiar with it), we went out to eat with a friend and her two kids. My son was having a really hard time dealing with the environment, it had been our first time there and he was running and touching things. While I was trying to calm him down, a very nice looking older man in a suit commented on my son’s behavior by saying: “you’re raising an axe murderer” to which I smiled and continued to talk to my son. That wasn’t enough for this stranger though. He continued by saying that he was serious, that he had been in the line at the bank earlier and had seen how my son was acting and how I clearly simply refuse to discipline him. Now, I need you to understand one thing: it had been maybe a month or so since finding out my son had autism, I wasn’t ready to tell my family about it, much less a stranger. By then my son was having a full-blown meltdown, I started to say something and broke down so I just grabbed him and ran outside to cry away from prying eyes. That was a very important day for me. It taught me two very important things: 1- People judge based on their own experiences and 2- I was alone in this battle for my friend never once said one word, not to me, not to the stranger who attacked me. With the many more nightmarish experiences that followed I was forced to grow a thicker skin, to educate myself; I was also more aware of my surroundings and the people in it. I used every “bad” moment as an educational moment.
Fast-forward 4 years of intense SPL, OT, PT, ABA and social therapies and I am now faced with a different, yet familiar problem. My son has now entered the invisible handicap status. For a while when I told people that my son has autism they would change their entire demeanor, they’d express understanding, sometimes condolences or even pity (I’ve learned to deal with that as well). Today when I tell people my son has autism I hear “he doesn’t look autistic” (you’re lying to excuse your bad parenting), or “how is he able to understand this but not that then?” Even friends and family members have come to “forget” that he has challenges because of all the great progress he has made. What has happened to their awareness, their understanding?
Don't get me wrong. I am not saying I wish his autism was more visible or that he hadn't progressed so much or so quickly, but it's a very bittersweet process for I am left lost. Sometimes I feel like I am starting to navigate Autism all over again, learning all about it from my son's point of view. To me autism awareness isn't about a day or even a month, it isn't about having people feel bad for the parents or sad for the children affected by Autism. It is simply to help others understand what it is or what it isn't. It's about breaking down stereotypes and opening doors not only for our kids but also for the estimated 1.5 adults living with ASD in the U.S. alone.