"Too open" about it...
I wonder how many of us have heard this, from well-meaning people... I heard it yesterday & I'm still trying to process my feelings.
I was talking to a friend about a recently-met other person, and my feeling that this person seemed to have difficulty, at times, finding things to say to me. My friend's response was that perhaps I'm too open about having an autistic child- implying that it puts people off. That this is what would make it hard for someone to find things to say to me.
I have gone round & round in my head- & out loud to Charlie- for a long time, about how to speak of autism & how it affects me & my family. I certainly don't want to be obnoxious, single-mindedly harping on the topic night & day- that just turns people off. I do my best to speak positively & respectfully about my son & my whole family, to retain our human dignity. Having been disabled in the past, I know that people prefer not to hear about difficult things. They are uncomfortable, they don't want to to have uncomfortable things brought to their attention. It's so much easier if we just stay invisible... I have tried being invisible- which is easier on some levels, but feels very much like pretending, like faking. I have tried saying as little as possible- waiting, say, until Brendan does something obviously "different" in public, & then being open to answering questions (as if anyone's brave enough to ask...). These approaches meet the needs of our society, to some extent, but they certainly don't meet the needs of my kid or my family! It just feeds the dominant paradigm of ignorance & cruelty by acting as if there's nothing different about my child or my family. It doesn't prepare society to meet us or accept us.
So, I talk openly about my autistic son & about being an autism family. I'm as proud of him & his accomplishments as any mom, & I don't see any of it as being "in spite of" his autism- sometimes, what makes me proud of him is a result of his autism, a result of who he uniquely is. Our family is different than many, too, & I think it's important to let others know about our journey. If I don't talk about us, how will anyone know that they know a family that lives with autism? How will they know that it's not just something that happens to other people? How will they learn our truth about autism- that it's possible to live with it & love someone with it & be proud of that person- & understand that there isn't just one way to think or feel about autism? How can we change the world if we hide?
I believe that we are doing nothing less than changing the world, by being who we are, loving each other for who we are, & telling the world about it. I know that I risk seeming like a "Johnny one-note" when it comes to autism, but it feels terribly important to me to prepare the way for the rest of Brendan's life by talking about difficult things now. As an autism parent, I feel like I'm on the front lines of a desperately important issue- how society is going to make room for my son as he grows up.
So, in the face of feedback that perhaps I'm too open about having a child with autism, the whole of my being says, NO WAY! This is as much a part of me as my need to create- to knit & weave & dye beautiful colours. (I wonder if I'd ever be told I'm too open about these things...) My child & my family are at the centre, the heart of my life. I speak often & lovingly of them. To a select few I also speak of the more difficult things, because I need support, as any parent does. As Charlie has pointed out, we had friends evapourate in the aftermath of Brendan's diagnosis, people who couldn't wrap their heads & hearts around us as an autism family. But we have many more friends who have stuck with us, & who are living proof that our openness about how autism affects our lives does not have to be a turn-off.
I'm wondering how other families deal with this sort of feedback when they hear it. What do you say? How do you feel? Let me know, please! It would be a help & a comfort to know how you're facing this, too. Thanks, friends!!