Brooke in one of her favorite shirts
Yesterday, I wrote a post about hope. About how important it is to believe in the unlimited potential of our children as they self-actualize into the incredible human beings that they, well, already are. The comments on the post were incredible. I even posted a piece of one from a fellow Mama on Diary’s Facebook page, because … this …
… Like how amongst us all belief is a bit of a currency that we give and receive in accordance with who needs it and who’s got some extra to share. Like how if life hadn’t brought me a parenting experience that was about believing I might have made it about expecting and would have missed out on so damn much magic.
I know, right?
If you haven’t seen the rest of the comments, I’d urge you to click back and check them out. They were pretty damn incredible.
But there was one that came in last night, long after most of the others – one that spoke to the nagging fear that I have every time that I talk here about hope for our kids. The little voice in the back of my head that says, Are you sure that you’re being clear about what that ‘hope’ needs to look like, or, more importantly, NOT look like?
The comment popped up on my phone while I was sitting at an excruciatingly long red light. I took a quick glance at it and my breath caught in my throat. Because I saw this:
As an autistic person, I know how difficult it can be to hold out hope that someday, somehow, someone you love will speak your language back to you.
When the light turned green, I drove about fifty yards and then pulled over to the side of the road to read the comment in its entirety. It couldn’t wait. By the time I’d finished reading it, I wanted to hug its author. She had plucked the nagging fear from the depths of my brain and given it a voice. A reasoned, thoughtful, yet urgent voice. And it wasn’t a voice like mine, guessing at this stuff from the outside in; it was a voice knowing it from the inside out. Right there, from the side of the road, I wrote to the comment’s author, Emma. I asked for her permission to publish her words here as a stand-alone post this morning. Because this needs to be heard. I am so grateful that she agreed.
As an autistic young adult who’s been reading (and enjoying!) your blog for a while now, I feel like it’s impossible for me to exaggerate how important I think your insights here are. So I decided to write an absurdly long comment detailing exactly why the way you talk about this is awesome:
As an autistic person, I know how difficult it can be to hold out hope that someday, somehow, someone you love will speak your language back to you. And it is similarly valid and important for neurotypical parents or teachers to feel hopeful about their relationships with others (autistic or not). So, to parents: Yes, please; feel hopeful for your child’s future. Believe that, given the appropriate accommodation and validation, your child can be a happy, fulfilled individual. Believe that they are capable of unlimited, unpredictable growth.
But, at the same time, please, please, please examine the sources and the structure of your hope. Do you believe that typical behavior and communication reflect the “natural” conclusion of a universal process of growth? Do you only consider a change to be “growth” if it results in your child acting in a way that you find more relatable or comfortable? The reason it is important to “presume competence” is not because all people are capable of displaying “competence,” given enough time and encouragement. We must presume competence as a way of acknowledging that competencies exist independent of our ability to identify and interpret them.
Please, do not presume that all people are capable of social “competence” given sufficient support; instead presume that all people’s sociability is somehow a competent one, even when you do not understand it. Please, do not presume that all people could learn to converse “competently,” given sufficient support; instead presume that all people do converse, even when their responses or reactions fall outside of communicative norms. It is important to spread the kind of hope you talk about, a hope-as-presumption-of-intrinsic-awesomeness, because differences are valuable and “normal” definitions of personhood are damaging. But it’s especially important because the easiest way to isolate and silence atypical people is by assuming that the natural, universal consequence of any person learning and developing is that they become normal/more relatable to you.
When a parent talks about how they still hold out hope that their child will someday spontaneously have whole spoken conversations about social stuff/feelings with them, even though their doctors prognoses are like absurdly terrible, I am conflicted. Hope and optimism are not incompatible with prejudice and narrow-mindedness, and the combination of the two is especially complicated to discuss. I can want parents to experience the sense of engagement they seek with their child while simultaneously rejecting what those parents want their child to become. This is a kind of hope I cannot live without; that anyone, any parent, any child, is capable of building something with others…even if at first, it might seem impossible.
When I think about parents or teachers hopefully working, and waiting, for a child/student to “develop” normalcy, I am struck by the impossible task that child has been given. Nothing they do or say will mean anything until they are judged to have communicated what they mean. I can say, from personal experience, that it is impossible to communicate with people if their only response to my language is either to ignore it, or say that it is incomprehensible. Assuming your language is the only possible language and, therefore, the natural end product of human development is just another way of assuming that anything you don’t understand doesn’t matter (or even exist). Both assumptions are, in my opinion, indefensible.
Any two people who speak different languages must presume the other is trying to communicate, despite their incomprehensibility, in order to start building a third language they can share. That respect, and acknowledgement of valid difference, will always be a pre-requisite for building a language with other people. And building a shared language is always a necessary first step if one person hopes to become fluent in the language of another. Your post (and your whole blog, honestly) are a damn great example of what building a shared language can look like.