Understanding

The Z99 Radiothon is finally over and upon it’s wrapping up it made me realize a few things. I was so focused on this being a ‘success’ that I never stopped to define what success would really mean for me. Although I was raising money for the NICU, that wasn’t my primary goal. The goal was/is to raise autism awareness and acceptance. Yesterday as I was laying in bed scrolling through Facebook I saw a post by someone that had said her goal wasn’t autism awareness anymore, it’s acceptance, saying that people are already aware of autism. While I agree with her on the one hand, I had a conversation with my mom that made me realize we still have a long way to go. I think for the most part, people have heard of autism. It’s certainly becoming more popular within the media with shows like Atypical and The Good Doctor.  I’ll be honest, I watched the first season of Atypical without having an understanding of what autism really is; and if I’m being really honest I walked away still not understanding all that autism encompasses. I have yet to see The Good Doctor, but I have high hopes and I’ve heard great things about Freddie Highmore’s portrayal of Dr. Shaun Murphy.

Fighting for a diagnosis is hard. You know in your gut something’s off and she’s not developing the way that her peers are, so when you’re right there is a little vindication followed by instant heart ache. As a parent, of any ability, it’s torture watching your child struggle. When I told my mom that my daughter is being assessed for being on the spectrum, her response surprised me. At first she said, so what if she’s a little behind, she still is who she is. But that was quickly followed by ‘she seems pretty normal,’ and that’s when I realized that my mom knows what autism is, but she doesn’t know. That’s not the first time someone has said something like that to me. I have had my parenting skills questioned, judged and attacked, I’ve been told I’m not doing enough, I’m lazy, I’m looking for something that doesn’t exist; and I’ve also heard from people who have known her without the label that she’s never been seen as has having autism, she’s just ‘quirky,’ ‘different,’ ‘skips to her own beat,’ and she’s ‘in her own world.’ The autism spectrum is so long and wide that it’s difficult to explain to someone who doesn’t know what it is. Each person is unique and while there are shared characteristics there is no ‘one size fits all’ which is why, in my opinion, it’s hard to raise awareness. There is a difference between knowing and knowing. I think, instead of raising awareness, we should be raising understanding.