Who Do I Speak For? – Autistics Speaking Day 2015

Autistics Speaking Day LogoIt’s the first of November again and that means it’s Autistics Speaking Day. Autistics Speaking Day has been happening every year since 2010, steadily gaining attention and this year I heard a criticism leveled at the annual event.

A parent of an Autistic child declared that the event is mis-named and should be called “Autistics Speaking for Themselves Day” because she wanted to make it clear that those of us who are able to write about our Autistic lives and experiences are not like her child. She presumes that her child will not grow up to be someone who can write about their life and apparently presumes that none of us were ever like her child when we were very young, too.

I’ve written before about the insult and injury of assuming that adults with various competencies are not in any way similar to children still learning basic skills. Today I want to talk about who I write for. It’s an important question — the mother who complained about Autistics Speaking Day wants to make sure everyone knows that we are not speaking for her child.

I do speak for her child. I speak for all the children.

Let me unpack that a little bit. Of course I speak for myself. We all can only speak for ourselves and I am careful to try to remind readers that I am giving my perspective, based mostly on my experience, though also seasoned with the experiences others have shared with me as well as the scientific research I read. My words are drawn from many sources but in the end it is only my own lived experience of my own Autistic self that I can ever share as a true insider. I can never be inside someone else’s Autistic self.

I sometimes gripe about the title of the book Inside Asperger’s Looking Out because the author is not Autistic and cannot write about Asperger’s from the inside. Hoopmann writes, “Not having Asperger’s, this book took a lot of research and I listened to hours and hours of Youtube videos by Aspies, and joined online Asperger sites to get their insights.” While I admire her industry and dedication, the author had no right to title her book “Inside Asperger’s.” That is a type of “speaking for” others that I find offensive. For example, while I strive to support the needs and issues of Autistic People of Color I would never say I have the inside story about being Autistic and a Person of Color.

So what do I mean when I say I am speaking for others? There are different definitions of the phrase “speak for.” One definition, according to the American Heritage Dictionary, is “to serve as an official delegate of; represent.” I can’t do that. I cannot presume to be any sort of official delegate for others, particularly children I have never met. And there is no way that I speak in any official capacity for People of Color when I try to draw attention to issues they have already declared to be important to them. When I say I speak for someone else, I mean I am trying to help them achieve their own goals and trying to avoid talking over them. I am trying to help amplify their voice. In some cases, I’m trying to make people aware that they even have a voice and should be listened to.

I am not speaking “for” others, meaning “in place of” others — as in “applesauce can be substituted for eggs in your baking.” I cannot speak for children that way and neither can their parents, their doctors, or their teachers. I am not a substitute or proxy for anyone.

I am speaking “for” others, meaning “on behalf of” others — as in “many Autistic children don’t have the language skills yet to tell you what they are experiencing, so I am telling you what my childhood felt like. I did not have the language skills to explain these things when I was a child, either, so I am telling them now as memories, for those who are currently experiencing similar things in their lives.” I am not inside their heads. I cannot know exactly what they are thinking and feeling. But I can explain how I felt and maybe it will help family to get a possible glimpse inside what a child’s inner life might look like. I speak for the Autistic children.

I am speaking “for” others, meaning “in favor of ” others. I speak for truth. I speak for beauty. I speak for my fellow Autistics. I promote them to others as valuable, worthy human beings. I am in favor of them being respected and treated with dignity. I support them. I try to encourage them. I speak for them, every chance I get. I chastise those who speak against them. I speak for the Autistic children.

I am speaking “for” others, meaning “toward a recipient or beneficiary of an action.” I speak for others who need to hear the message of their beauty. I speak for others who need to be reminded of their deep, intrinsic value. I bring inspiration and validation to people. It is them I am speaking for. I speak for the Autistic children.

I am saddened when a parent seems to feel threatened by my speaking for their child. Don’t they want another ally on their child’s side (and, by extension, on the parent’s side as well)? Don’t they want someone from the same neurominority as their child to help them gain more insight into what it is like to live a life “differently brained”? Couldn’t I help them avoid my pitfalls by sharing them? Can’t I help give parents insight into one of the many ways a child can turn out after being someone who crawled on the floor and hid under tables and bit others and generally made their teachers dream of retirement? I have so much to offer and, if nothing else at all, I am an adult who will not judge a parent unworthy if their child is Autistic . . . because I am not judging the child as unworthy, either!

I am an adult who cares, who has a special fondness for your child before ever having met them. I am an adult who wants to help. I am an adult who wants to be a supportive force for good in your life. I just don’t understand why so many parents reject that.

Don’t be angry that I am speaking on Autistics Speaking Day (and every day.) Don’t demand that I never speak for your child. I am only speaking a message of love, acceptance, support, and validation. What parent doesn’t want those things for their child? I am speaking for your child. I beg of you to embrace that, on your child’s behalf. Together we can speak for your child and recruit even more voices along the way — including, when they’re ready, your children themselves! We will get the world to listen to us!

Yes, I speak for myself. But my real satisfaction comes from speaking for the Autistic children. I love them and want them to have every good thing in this world. They will only attain that if we all speak for the children. Every day we have the opportunity to change someone’s life for the better, forever. I speak for the children and I will not stop so long as we live in a world that doesn’t listen yet.

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9 responses to this post.

  1. Reblogged this on bunnyhopscotch and commented:
    Fever. Autoimmune and sensory flare ups. Pain. A lot of it. A few days left to the exhibition set up. The show must and shall go on! I have no strength to speak more, need to channel last drops of energy towards my mission, i.e. my PhD exhibition. I shall let this wonderful post speak for me. Thank you for speaking!

  2. Posted by mooncatadams on November 1, 2015 at 9:40 pm

    You may speak for me, because you are far better able to express, define, and delineate things than I ever could. That old “You can’t speak for my child” trope always annoyed me, but I could never explain WHY as well as you just did. Thanks.

    • Thank *you*

      I always appreciate it when people let me know that I’m missing the mark in what I’m saying, because it gives me a fuller understanding of the diversity in our community and helps me (and others) speak better for all of us as we try to make our world a better, safer, happier place for us all. Glad to hear I *have* been hitting the mark for you.

  3. Yes. This. Perfectly expressed. Thanks!

  4. I am the only parent of a 20yo nonverbal daughter with autism, ID and epilepsy. I recoil when someone says they “speak for” my daughter because for the most part they don’t, but your explanation is elegantly differentiated from others and I do appreciate your intentions and insights. Because you list them as a resources, please explain to ASAN that they do not “speak for” my daughter when they advocate for policy that denies my daughter (and me as her guardian) her human and civil rights to make an informed choice about where she wants to live, work and play and to use HCBS funding to pay for the supports she needs in the settings of her choice, whatever that may be. Community is defined by the individual…not CMS, ACL, or ASAN.

    • It is very concerning that ASAN is advocating a policy that takes choice away from your daughter and you. Can you give me more details about the specific policy proposal so I can follow up on this? Thanks!

  5. What’s always curious to me is that often when I read a “not like my child” post, that often numbers and statistics are cited anyways. When we are statistics on the 1 in 68 piechart (1 in 45 now) we are a convenient number, when we are individuals that can communicate, then we tend to become inconvenient.

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