You’re Damned if You Do And Damned if You Don’t
After I walked the long road from complete and utter fear and confusion surrounding Kate’s autism diagnosis to something that faintly resembled acceptance of our new world in the autism arena, I began to write and write and write some more. Writing began as a therapeutic tool and turned into so much more when I began to share my words. I realized that some would commend my candor and some would condemn it, but I still chose to share. Those that appreciate my willingness to talk about all the ways we fumble and fly are as crucial to our journey as anyone. Those that hide behind their computer and call us vile for daring to share the ugly parts of this journey can bite me.
People With Autism Are The Only True Experts on Autism
I used to think that I needed to find the greatest minds in autism research to truly understand my girl. I contacted researchers at Harvard and Yale and other schools of great prestige looking for answers. I wrote down everything I learned and read it over and over, never really understanding more about Kate’s world. I learned a lot from these talented minds, I really did. I learned that autism is most likely a result of both genetic and environmental factors. I learned that there are a number of therapies that can help Kate navigate her day. I just never really learned more about how Kate felt or how she saw things. Once I realized that social media was giving me access to the minds of adults with autism, I truly began to see, at least a little bit, into Kate’s world. I could ask them why some sounds bothered her. I could ask why she struggles to make eye contact and I could ask, most importantly, what I could do to help. I wonder when those aforementioned great minds will begin to tap into this resource?
Sharing is Caring
If there is something important happening; if there is something worth seeing or reading or hearing out there, some kind soul or a thousand of them will make sure we see it by sharing it on social media. We get to see children and adults with autism crush stereotypes every single day. There is no shortage of proof that everything will be OK in one way or another. And if for some reason it won’t be OK, there are numerous people who have been there before, are living there now or will be there soon and they will (virtually) stand beside you every step of the way. I have yet to meet some of our greatest friends and allies because at the moment they live inside my computer.
Making Connections is Key
Whether you’re connecting with hospitals, therapists, other autism parents or adults on spectrum is fundamentally the most important part of understanding your world. Knowing that explanations, understanding and solidarity are just a few key strokes away can offer some serious comfort to a struggling autism parent. The online autism community is vast and while it has issues like any other community, it is, for the most part, an indispensable resource.
Those Perfect Families Are Not So Perfect After All
Before social media became a way for me to connect with other families like mine, I would browse superficially as people would post status after status and picture after picture of their perfectly curated lives. In fact, I participated in the very same thing on occasion, as I dressed my children in coordinated outfits and took hundreds of shots to ensure the perfect one that would detail how charmed our day had been. Then, on an afternoon when I was too tired to pretend because the meltdowns were abundantthat day, I posted a little dose of reality in the from of the most perfect little bite mark on my arm. The response was so immediate and so full of intense relief that I realized that we are craving the truth about parenting, autism or not and the Instagram-filtered news feeds are harder on us than we realize. So, let’s keep it real, for our own sake.