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Friday, September 30, 2011

On Joining, Understanding and Pulling Out The Knives.

This post has been edited. After sleeping on it, and re reading this morning I was unhappy with how I presented some points.

I really enjoyed a recent post at by Kristina Chew. It was written as part of the ongoing 'Dialogue' between autistic self advocates and parents of children with disabilities.  Of course Kristina's words spoke to me particularly as we both share the experience of raising a son with Autism. But more than that, her message regarding why hearing the many and varied voices of Autistic people beyond our own family members is important resonated strongly with me. Interestingly her post has generated very little response to date. And I wonder why that is?

Here's my take on why I feel Kristina's message was on point.

  • I heard her saying it is important to appreciate that parents usually know their child better than most and do want the best for them. Granted there are plenty of examples where parents have clearly not acted in their children's best interests, both within and outside the Autism community, but any parent engaged in the above 'dialogues' must be given the benefit of the doubt, or they would probably not be reading them.
  • That others outside (and often inside) your family will judge you for the decisions you make regarding your child, but you need to hold to what you know to be true. What is optimum for your child. And that happens best when we pay attention to our children.
  • Most parents want their Autistic child to find their way in the world, to achieve what it is that will bring them happiness and whatever level of independence they are capable of. Even if that does not look the same as societies ideal of success. For our Autistic children 'we go with them', to misquote Kristina's beautiful blog title. We also worry, and it's a delicate balance that we will not always get right. 
  • There is tremendous value for parents, their children (both ASD and NT children) and Autistic self advocates when we connect and work together towards common goals.
  • The voices of Autistic people are incredibly valuable when heard. Parents can choose to go through life ignoring the thoughts of others, only responding to their own family situation. But in doing so they may miss out on a more positive and insightful way of considering Autism. And more importantly they miss the opportunities to understand the position of self advocates in order to carry their message forward, and create the potential for better opportunities not just for our own children but all people on the spectrum.
  • Neurodiversity is another way of saying celebration of difference. And once we genuinely accept that difference we are better people for it.
I don't see that what Kristina is saying is all that different from what many autistic self advocates are saying. Yet the message from some self advocates seems to suggest, 'stop talking about your experiences, we have heard enough'. It feels invalidating and when you are already emotionally fragile, for a multitude of reasons I'll discuss another time, it feels like a knife in the gut being twisted. And that pain makes listening difficult to near impossible.

Do the voices of Autistic people need to lead the charge? Yes. When possible they do. But parents will always be more invested than your average foot soldier in this battle.

I will blog another time in the not too distant future about how raising Harri has impacted my own neurology, and how that now affects my capacity to engage in difficult conversations. (just ask my poor husband). I don't see this issue mentioned much, nor the issues relating to NT siblings, and I'll leave that for another time, but I mention these things as they highlight there is always so much in the background that is affecting the messages given and received in any given point in time, from any particular person. But I digress.

 I'd been close on several occasions to bowing out of the 'dialogue'. I didn't feel I had the emotional fortitude at this point in time to withstand the twist of the knife, and respond in ways that further rather than detract from what is trying to be accomplished at TPGTA. Then a couple of days ago I was contacted by two women. Both offering support and connection, and both Autistic. One refusing to get involved in the conversation at all, the other very involved. This in tandem with reading Rachel Cohen-Rottenbergs blog post pulled me back in. And truth be told made me feel some shame at my petulance for considering taking my bat and ball and going home. Particularly when I lacked graciousness in my own contributions.

When I was ready to walk away they gently and perhaps unintentionally, reminded me what these dialogues are all about. With two simple words. "I'm listening".  I dont need agreement, but to be heard. Just like every other person. So I say to all Autistic people who are willing and able to speak out. We may not always agree. But I'm listening.


  1. Fantastic post, you made a lot of vital points really well (and some I hadn't even heard before, but which are so very true).

    As for me, I've given up on that particular set of Dialogues. I actually felt them increasing my anger and frustration with "self-advocates" rather than healing any rift. (I don't have a problem with self-advocates at all, I think the suggested divide and conflict isn't actually between parents and self-advocates as distinct groups; it's between different attitudes and approaches to autism which cross other boundaries. Presenting it as between parents and self-advocates is unhelpful and distorting in my opinion.) I know that the views represented there are only a sample of a much wider, richer (and kinder) set of voices that want and need to be heard, and I'll happily seek them out in those other environments instead.

  2. THanks a&o, I completely agree with you. I think it's a polarising discourse, as I said in TPGTA forum. I think I'll just stick to what I was already doing in my little part of the world.