There’s been an ongoing debate in the autism community. One about ideology, one about words. It’s about what it means to support an autistic child (or adult), and it’s about how one feels about the word “autism.” Is it something to accept, or something to fight?
This debate has come to a fever pitch this week, when autism mom Brenda Rothman took a stand for acceptance on her blog Mama Be Good. Her point? “A parent cannot fully and unconditionally accept his child, but not "the autism." That's not unconditional. That's not acceptance.”
The post has driven a lot of hurt feelings and anger from parents who felt it was an attack, who say that they love their child, but can’t love something that, in their view, causes their child pain. They love their child, but “hate autism.”
It makes me sad to see the conflict and hurt feelings, but I will say this. If my autism had been recognized as a child, and I heard someone say, "I hate autism." I would certainly have felt it to my core. The logic here is simple; I would think as follows: If "autism = bad," and "me = autistic", then "me = bad" must be true.
Not more than a couple of weeks ago, I had a conversation with my mother. In it, she stated unequivocally, “You know I never much cared for labels.” This, I believe, is part of why she felt this way. Stigma becomes so entwined with the label, yet nobody can seem to agree on definitions of what exactly the label means.
Diagnostic labels leave a lot of latitude for inclusion or exclusion. What is a consequence of autism, what is a “comorbid condition”? What positive traits are connected to the diagnosis? If they are there, is it coincidental or a consequence of the condition? When we say autism, what exactly is it that we are referencing?
To those that hate it, autism is a litany of negative things; to those of us that live with it, it's much more complex. I identify a great deal with the character of Rogue in the X-Men movies. She has a mutation that is extremely powerful, but also imposes great vulnerabilities.
In essence, when she touches another human being (or mutant), she absorbs their energies, including any powers they might have. It has obvious advantages, but one major drawback—under most circumstances she cannot physically interact with others. It would harm them and cause them pain.
It's hard not to ache for her, desiring contact with others but being unable to fulfill that desire. In the movies, she shows great ambivalence, torn between the abilities her condition affords her, and her desire for human touch, companionship. A boyfriend. I get this ambivalence, a lot. Of course, autism is different—although the effect for many of us is the same (difficulty with physical touch), in our case it’s us that feels the pain, not the other person.
For me, autism means I have certain traits that can be very disabling in some conditions. However, if supported correctly, and in the right environments, a great many of them be turned to advantages. I attribute the bad things that have happened to me not so much on the traits themselves, but ignorance (myself and others') of them.
I was hit by a car twice by the time I was 20. (The first of which I wrote about previously.) Both incidents involved traits of autism, but I don't attribute them to the traits themselves. I attribute them to the inability/unawareness of how to appropriately cope with those traits. Now that I have learned ways to cope with them, life is infinitely better.
When I was in middle school, no one knew that they had to teach not only how but why to follow safety rules. I had to learn through hard knocks (no pun intended). When I was 19, I didn't know that stress, emotion and a bustling environment could cause overload that interfered with perception. Now I know, and can adjust. And some of these things, like the sensory issues, have flip sides, like psychedelic synesthesia.
The first time I ever met a person who was diagnosed with autism, a protégé of a cherished teacher, I was afraid. How ironic is that? Stigma's a killer. How would it have been if he and I had been able to connect? If societal hatred of autism hadn't instilled in me that fear and stigma? What could we have learned from each other? Would we each have felt less alone?
Every time someone "hates autism" they are "othering" us. It is saying, "I hate the part of you that isn't like me." People hear that. They respond, with type of fear and stigma I felt that day. I didn't know what autism was, but I knew it meant "he's not like us." How wrong I was. How wrong we were.
Let's not "other" autistic kids. I remember having meltdowns that left my parents at a total loss. Screaming until I collapsed in exhaustion. Yet, I never heard the word hate. They would do their best to soothe me, make sure I was safe, try to figure out what was causing it, and how to help me cope.
But I never heard "I hate this!" I did, however, hear challenges to expect me to learn to deal. To look for constructive solutions. Not saying "I hate autism" isn't the same as not challenging your child to be all they can be. To be more than they think they can be.
If a person is autistic, autism goes with them wherever they go. If autism is something to be hated and feared, hate and fear will follow too. In the scope of things, it's fear that is the most damaging. Don't teach people to fear your child.
Let’s all work together to help others to see that people with autism are just that, people. They are different, but not less. They are nothing to fear.
They are just people.
More on discussion this topic, see the comments in Brenda's original post: