[I preface this post by saying that the views reflected here are mine. I pass no judgment on anyone for their expressions of speech or thoughts. I am sharing my own thought process. I respect your right to feel differently.]
What happened when I heard the words, “Your child has autism” ? I kind of knew by that time that it was coming. In fact, in a way, I was hoping it was coming because I thought it might help me get services from our state funding resource. But who would ever welcome autism into a home? Clearly, I was no different. My heart instantly felt like an anchor in my chest when I heard those words.
In part I think that is because, from the beginning, I was told my child had something “wrong” with him, that there was no cure, and that he would never be “normal.” I had no idea what autism was but I knew it had to be something “horrible”, mostly because that’s what the medical profession, TV reporters, and society conditioned me to think.
In a world filled with neurotypical ignorance, I was part of it all until my life was affected. My very “non-understanding”, pre-diagnosis made me feel autism must be all bad, sad, deficient, disabled, and, at a bare minimum, not normal. But was it “autism” that made me “feel” this way, or mainstream society’s view of autism?
When I see my son struggle, act out for his inability to communicate, destroy something, scream or when I lose him to “another world”, my insides burn, my muscles tense. When I got kicked and clawed while carrying him out of a public place, my adrenaline pumping while I ignored stares of people thinking I’m hurting my child, I felt spent, powerless and defeated. I still have anger and frustration but mostly, I have fear. And a strong sense of life not being fair.
I want to hate because it is a release. A release of all these emotions that I cannot direct at my child whom I love. I need to let go. I need someone or something to direct my anger at, to let me release this emotional overload. So an amorphous label takes the toll.
On the other hand, if I freely express “hatred” at autism, is there a chance that my son, who has difficulty processing language, and, definitely, discerning figurative from literal meaning, may misunderstand and think that I hate part of him because I express “hate” for autism?
Oh. Yes. It is more likely than not that he will misunderstand.
By “hating” autism, I might mistakenly convey something I would never intend, in a million years, to my son. And he is what it is all about. So, no matter how angry, frustrated or fearful I get, I am not going to do what is easy for me, say what I have a right, by free speech, to say, and express that I hate autism. I don’t need to.
Hate does not give me power over what I am powerless over. Hate does not make it better, it doesn’t change anything. Hate gives autism a face. An ugly face.
There is enough ignorance in the world. There are millions and millions of neurotypical people out there. They don’t care what autism is. They don’t need to care because they think their lives are unaffected by it. Some don’t even believe it really exists. And no matter how much we think inside our own “touched” lives that people already know what autism is – we’re wrong. Most people don’t know. At best, they fear it and they pity those of us who are “affected.”
So, who cares? Why should I want to make someone aware? For the same reasons, I’ve said all along. Awareness kills ignorance and sprouts knowledge. Knowledge leads to understanding. Understanding can lead to acceptance, to nurturing, to voting yes for increased funding, to help those affected, to make life better for my son.
If I want people to understand it, I have to develop interest. To develop interest, I’m not using “hate”. Why would someone want to learn about something a stranger hates? Easier to ignore it. People are generally, lazy, in my opinion. Why expend negative energy to learn about something I’m just going to hate?
How autism is perceived by others is affected by how I (and everyone who writes and reaches an audience) writes and reacts to it, how we express ourselves, how we handle or deal with what happens to our children and ourselves.
Autism makes life hard. There is no denying that. It’s not some new age way of thinking. It’s not something that you can put away. You can’t hide it. You can’t disguise it. You cannot dress it up as “cool”. You cannot make it go away.
Autism is a disability. It now affects 1 in 88 people. People “unaffected” may be curious. They are either going to search for more, or run away and ignore, depending on what impressions they get. I don’t want them to run away. So, even though it hurts, both emotionally and physically at times, (I cannot and would never deny that), I will not openly hate.
There is too much to lose and nothing to gain.
[And being as it’s FRIDAY – I’m linking up with Sunday at Adventures in Extreme Parenthood and lightening the mood with Special Needs Ryan Gosling! Here’s this week’s contribution…]
Go check out what other special needs moms have done with this one here! Because it’s Friday and we all need a little break…