Welcome to Worldwide Autism Awareness Month. The month where people buy blue light-bulbs and share puzzle-piece ribbons. The month where people argue and bicker about the causation of autism, as well as the appropriate therapies and treatments of autism. Most importantly, if you are anyone who loves someone with Autism, this is your month to try to educate that mother-in-law (or other friend/family member) who STILL blames you for your child’s misbehavior — the one that feels so strongly that if you only put your foot down, or spanked him/her, or fed them more apricots — then your child would be fine.
If you are anything like me, the mother of a child recently diagnosed with High Functioning Autism, this has been a month of “coming out” of the closet that 1 of 68 of our children reside in. An opportunity to share our experiences, our joys, our heartaches, our hopes and our fears. And if you are anything like me, you are likely frustrated with your lack of progress. Right now I feel like: how on earth am I going to get the support of my family and friends if I cannot even get my son’s school to agree? It’s an emotional month: a month where we try – so very, very hard – to gain acceptance and awareness for our children in the hopes that maybe we can make their lives a little easier. “Maybe — just MAYBE — this post will travel the internet and someone who would have otherwise bullied a child with autism will choose not to,” is the hope. And maybe, just one day, that child not bullied will be my son.
So, it’s true to say that I am TECHNICALLY new to this party. It’s true that my child with high-functioning autism was just officially diagnosed three months ago – however, that is not to say that we haven’t known all along that he was on the spectrum, he was just so high functioning we didn’t require any additional assistance at the time. Nonetheless, the diagnosis hit us like a ton of bricks, and almost pulled my hubby apart. Like so many others, I went to the internet to find information and support, and joined a few online support groups. I have learned a lot from these support groups, but I have also felt less than supported most of the time.
It seems there is a big divide within the autism community. A divide that affects our viewpoints, not just in April, but all year round. The divide is quite clear: is autism a blessing, or a curse? See, I only have one child, but I imagine if I had a neurotypical child, I would have challenges and battles to face with my NT child as well. Would they be greater than those of my Aspie? I cannot say. I do know this: I do not believe that Autism is a curse, and it hurts my heart when I hear people say that. However, I know it is not my place to judge another person’s journey, but I do know this, from my searching of the internet immediately post-diagnoses, I can understand why people feel that autism is a curse. It’s all over the place. Check out this commercial done by Autism Speaks (the organization behind “Light it Up Blue”): http://youtu.be/8mycxSJ3-_Q.
Now I understand the sentiment of this commercial, but please know that when I was first researching Autism as a newly diagnosed parent, this is the first video that I watched. Imagine my horror and fear: this is going to bankrupt me and destroy my marriage?
It is no wonder there is a lot of fear and misunderstanding about Autism.
I have had several months, including this month of April, to think about this, and I cannot help but feel that we should be grateful for our children. Especially if they are happy, healthy, and motivated to learn, as most children with Autism are. We should cherish the moments and the little steps that mean so very much to us, and share their joy. I emphatically feel that if we, as parents of children on the spectrum, focus our mind on the good things, we will realize that having a child with Autism is not anything like having a child with a terminal illness (as that commercial implies). Having a child with Autism does not have to destroy our lives. As the survivor of a terminal illness, I can tell you quite assuredly that having a child that is neurodiverse is nothing in comparison to having a child that is physically ill. Normal is a setting on the dryer, and even then it’s not a very good one!
I truly believe that if we are going to survive this battle for our children, this marathon of a fight, we have to focus on the good side of things. We need to stop arguing amongst ourselves over things like causation and treatments, or parenting techniques, and we need to support each other. Instead of focusing on awareness and acceptance for our children, we need to be mindful that other ASD parents need acceptance and awareness as well. We all have the same hopes, fears, and regrets. We all secretly fear that WE did something to cause this. Did we make a wrong decision when we vaccinated our children? What about when we chose to bottle feed them? Or when we put them in daycare because we had to go to work? We are all afraid of the same things: we are afraid we caused this, we are terrified we aren’t adequately treating it, and we are afraid for our children’s futures. We need to realize that this is the real source of the arguments we have with each other, the real source of our troubles and sleepless nights. I hope that once we all realize that is the case, we can help each other to live with autism not just in April, but all year round.