A family's story

Struck a Chord…

I have read several blog entries over the past few days, and a high percentage of them address the latest gaffe by Autism Speaks. This time, it’s the fact that the co-founder wrote a very dramatic, fear-mongering Op-Ed piece in which she likens Autism to a malicious kidnapper that snatches up autistics and steals them away. She talks about all of the negatives associated with Autism. So much negativity. 

As a parent of an autistic child, it upset me greatly to hear that she, the co-founder of an organization that is supposed to be drumming up autism awareness, thinks that making people aware means you have to scare the ever-living daylights out of them. I highly disagree. We can promote awareness without freaking people out!

As the neighbor of a family who is starting to go through the process of evaluation, I am frustrated. I have spent the better part of this year trying to explain that an evaluation is beneficial. That a “label” isn’t a bad thing..and that it is better to know what you’re dealing with than to deny it into oblivion. I have discussed the benefits of therapy and intervention. I have talked about how living with my autistic son has helped me be more empathetic, more patient, and helps me put life into perspective. 

Now, I don’t deny that there are aspects of parenting an autistic child that are not all puppy dogs and rainbows. There are plenty of things that keep me up at night, or worry me. My son is one of those autistics who doesn’t sleep much. We are all sleep deprived. There are obstacles I watch my son grapple with every day, and a little part of my heart hurts (but that is on me, not him). We have had to cut vacations and change plans because we can’t afford it either money or time-wise. We are isolated at times, too. We don’t attend certain school events, nor do we entertain often. There are days when we deal with multiple meltdowns and opposition. It takes a lot of preparation and energy to coordinate things like haircuts and trips to restaurants or the mall. But we do it. In our own way. And in our own way, we are experiencing a rich, happy life. 

We aren’t, as Mrs. Wright suggests, “simply existing.” Hell to the mutherfrackin’ no. We are doing so much more than that. We are living–fully. We are laughing. We are loving. We are learning. And when we know better, we do better. So, “Listen Up”, Autism Speaks. As Marie Curie said, “Nothing in life is to be feared. It is only to be understood.” I think we all could benefit from understanding autistics and autism spectrum disorder better. I see my son, and how richly he experiences life, and I think I’d like to understand how he does it. I’d like to know how his mind works, and why certain things are calming and certain things are so anxiety-producing. 

Stop trying to instill fear, and instead, funnel your energies and time and money to UNDERSTANDING. Listen to autistics. Work with them to understand. That’s going to get us a heckuva lot further than rhetoric and fear-mongering.

*steps off of soapbox*




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