When I was in primary school, I went to stay with my grandparents one night that I have not forgotten, even 30 or so years later. Last week I received a message on my blog that I doubt I will ever forget. The two events are separated by decades, but remembering the first just after the occurrence of the second started a chain of thoughts that brought me to a place of realisation I was not expecting.
The reason I haven’t forgotten the sleep over at my grandparents is because my grandmother called me a liar. At the time I was confused and angry and hurt. Time heals, and I am no longer upset by this memory. I can now see it from her perspective and I understand why. The evidence supported her belief, and I did not say anything to her to give her information to the contrary. In fact I didn’t say anything to her at all.
I had been asked to have a shower, which I did, but at that point in my life I preferred a bath and as her shower had a deep base I blocked up the drain with my wash cloth and sat in the bottom of the shower cubicle. Because I had not stood up there was no water spray around the shower screen. Because I had played around at cleaning after I turned off the water there had been no obvious wetness in the bottom of the shower either. It was fair that she thought I had not showered, and she confronted me about it. I said nothing in response to her question “Why did you not have a shower?”. I thought, “I did have a shower”. But I didn’t say it. She asked, “Did you have a shower?” and I nodded. She questioned me further, but I remained silent, which she took as an admission of my guilt, and I was sent to bed crying and feeling disgraced.
I can remember numerous times as a child when I was unable to speak on finding myself in a conflict situation, or confronted over my behaviour by someone in authority. I had strings of perfectly acceptable words formed in my head, I could read them from across my forehead over and over, but I could not make myself speak them. This still happens to me as an adult. It is frustrating now. Then it was overwhelming and distressing, especially as I would often just cry in front of my accuser, red-faced and full of shame and embarrassment, and hurry to retreat somewhere that I could safely shut down for a while.
Last week, an anonymous person left a comment telling me that Autistic people can’t fulfil their potential or be productive members of society, are a burden that suck up tax dollars by claiming welfare, that parents should be able to know the probability of having an Autistic child so they can choose if they want to risk being burdened, and that Autism should be eradicated.
This comment made me angry, but I felt no shame. It was a venomous attack on me and my family and friends, but I did not feel disgraced. The person wrote it intending to upset me with their hateful opinion of me, but I felt no embarrassment. I know that this persons opinion is not uncommon, but I was not overwhelmed or distressed. It shook me up a bit, certainly, but even though I had a few moments of questioning myself it did not leave me in a state of shut down.
You see, as a child I did not know why I experienced difficulty with communication when stressed. I do now. I have learned so much about myself, and that has lead to being able to accept myself and be proud of who I am. I do not need to be part of the neuromajority to know I have value. I do not need to conform to standards of typicality to have something of worth to offer. I can be disabled and still have a right to life without being told autism should be eradicated. I can need support sometimes without being considered a burden, and I can still support others even if (and I won’t actually get into the ridiculousness of the following argument, but….) I don’t do it by paying as much tax as they do.
The shame and embarrassment that surfaced often in my childhood and young adult years came from not knowing who I was, assuming I was someone I was not, and as a result, trying to be someone I couldn’t.
I see people throwing around the word “Autistic” as an insult. Claiming “Autistic” is a label that they don’t want for their child. Accusing us of using “Autistic” as an excuse to be lazy and dependent. Saying “Autistic” means ill, diseased and broken.
To me “Autistic” means identity. It is a label I am proud to share with my children and my friends. It is a reason that explains so much. It is word that describes a way of being, and a gift that gave me permission to just be myself.
None of that is new to me. These are thoughts I am comfortable with and have written about before. But processing these two events over the past week has brought me to a conclusion that surprised me a little: I am comfortable being criticised for being Autistic.
As I was thinking about writing this article, I drafted “I’d rather be criticised for things that are true about me than for incorrect assumptions others have made about me”, but then I realised that is wrong on a couple of levels. Firstly, I’d rather not be criticised at all for simply being myself and because myself is not what people expected. Secondly, even though I tell people I am Autistic that doesn’t mean they won’t make incorrect assumptions about me.
So instead I will say,
I know that, as part of a neurominority group, criticism of the person I am and the way I live in order to be my best self is inevitable. It is illogical and narrow minded, but it will happen because our society does not value difference or diversity. I am comfortable with that, because it is still easier to tell people the truth about myself. I would rather be able to respond to criticisms with facts that will hopefully increase others understanding of who I am, and maybe help shift their ideas about Autism a little, than to be constantly defending myself from within the context of an assumption that I am something I am not.
As a child I had neither the insight nor the tools to do so, but I do now. I am older, understand who I am, am more capable of self-advocacy, and I have the strength that comes from knowing there is a community behind me who understands, accepts and likes me as I am. A community that will stand with me in saying, “You can go ahead and criticise all you like, but we are here and we have every right to be, so your words will not stop us from living our lives and living them well.”