I red a post on Facebook yesterday from the mother of an Autistic girl. The post bordered on a rant but was quite thought provoking. What struck me about the post was that it was a great reminder of the fact Autism is a part of our reality that most of us can take or leave at our own choosing.
Part of my reaction to the post was affected by a conversation I had earlier in the day with a blind woman (I’ll call her Betty) who is confined to a wheelchair. Betty is a well educated woman who has had some health problems in recent years. The topic of our conversation was how Betty can alleviate her boredom by getting more involved in the community. As I talked with Betty I noted she needs some tools that will allow her to connect more effectively with others, someone to introduce her to people and opportunities in the community, and she needs to gain a little bit of self confidence. In short: some things to fix and some things to deal with.
I have to admit I have no idea how to be present to people with Autism or those who they have been entrusted to to keep them safe as they grow. I do know however turning my back on them with the expectation that some unknown “they” will fix the problem of Autism and make it go away isn’t going to make anything better for anyone. I also know simply having the expectation the “they” who love and care for people with Autism could keep me from feeling uncomfortable if they only wanted to is foolishly naive.
We routinely are reminded that we should honor and support the veterans of our (now) all volunteer military. Why don’t we show the same respect for those who have never signed up for anything but have made a life-long commitment to a person with Autism? Our reality includes people with Autism and those who love them. At a bare minimum, it would seem “God bless you for all you do.” would be a reasonable response to the parent or loved ones of severely Autistic family members.
The text of the post is below:
This post is going to be the most negative thing I have ever written. Be warned. This morning someone cheerfully shouted, “Happy autism awareness month!” to me. Happy??? Really? Ha! I was going to try to ignore/avoid/completely disregard this month’s arbitrary title. (Truly, autism is the same every day of the year.) I used to do blue. I used to promote everything blue in April. I had the lights, the clothes, the daughter. I just cannot anymore. The plain truth is that autism is almost as horrific as the narrow-minded fools who have tried to tell me how to parent Maya. I am referring to the complete strangers. Maya’s therapists are angels in monumental proportion.
I adore my sweet child and celebrate every accomplishment more than you all will know. I would not trade her for anything. But, would I change her? Would I take away the autism? In a heartbeat. I would give my limbs, my heart, my soul if this could happen. I am sick of watching my baby bite herself hard enough to break the skin. Pinch herself until she is bleeding. Punch herself to the point of bruising. EVERY DARN DAY. Not just in April. Her goal is not to make people aware of autism, it is to survive.
I get that the point of this month is to try to educate and grow understanding, but honestly, I don’t have time. Thirty days won’t cut it anyway. I learned to not make eye contact with strangers years ago when two women in Mayfair told me I sucked (sorry about the language) as a parent while we were in line to see Santa. Huh. Even now, although I am looking straight ahead, I still see the stares and hear the comments about my kiddo. I do not have a daughter with high or even moderate level autism. I have a daughter with severe autism. There isn’t one kind or one level. Stop judging and go away!
Please do forgive me, I know Maya is not suffering with cancer or another life threatening disease, and I do not want people to think we feel sorry for ourselves. I am just sick of autism. (Ann N., 4/4/14)