I originally posted this in June of 2008, over 6 years ago. While I might change one or two things, specifically, replace the word ‘remediate’ with the word ‘teach’, this describes so much of how I still feel.
Fluffy and me, walking along a Cape Cod Trail; August, 2002, taken by Dave.
I’m not sure where I fit in.
I’m not an autism expert. I’m not an autism activist. I’m not an autism panelist. I’m not called for interviews or quoted in newspapers.
I’m not willing to stand up and say, vaccines have never played a role in autism. I can’t say that. I don’t believe they played a part in Fluffy’s Asperger’s but that is all I can say with certainty.
I'm not going to say, autism needs a cure. Cure is a loaded word. Those with autism are not suffering an illness.
Am I a straddler?
Am I straddling by not finding myself willing to topple over here where they say autism is a disease that ought to be vigorously researched in order to discover its cause and thereby, step closer to wiping it off the face of the earth?
Or to topple there where they say autism is a joy, a difference to behold and honor, something parents ought not speak about in terms of difficulty, concern, or worry of any kind?
Is it because I am mother to a boy with so much language? The ability to express himself with clarity and metaphor that sometimes takes my breath away? Is it because he washes and bathes himself, dresses, feeds, laughs at my jokes and fills our house with unimaginable life? Or is it because I have worked hard to change what needed changing in me in order to meet him where he was to find the best path to his learning?
Do I just not know what it’s like to have a child who has more profound disabilities that interfere with a parent’s ability to feel and be effectual in providing what their child needs to learn and grow?
Is it because I believe that remediation is possible and happening right now? In this house? In other houses?
Is it because Fluffy's autism may be remediated to the point where he is able to make meaningful connections in the world and feel safe and make a contribution and have meaningful work, and then I won’t give a damn whether or not he still can be said to have autism or Aspergers?
Is it because I think the issue ought to be: Is the world willing to see all people as valuable and capable of learning? and not: Is autism good or bad?
Autism is. That’s it. Autism is. And there are teaching methodologies that are powerful and respectful and child-centered and they ought to be common-place and available to ALL.
Autism is neither good or bad. It brings with it many challenges, some mild, some profound. It is right and good to work toward alleviating those challenges and if possible, eliminate them. Is this radical to say? For some reason, yes.
Is it okay for parents to express their sadness and concern when they see their autistic child struggle with not being able to make meaningful connections in the world, feel safe, and contribute? Why is that seen as against acceptance?
Why is there this drive to decide ahead of time who is able to learn what and how much?
I use to want to get rid of the autism. I felt it was a tic that was ON my son and I wanted it OFF. I was scared of it.
But I’m not anymore.
The change in me came from casting off what I heard and what I read and tuning in to what I felt and what I saw.
You know, I put myself in the neurodiversity camp. I’m for the wide embrace. I'm not sure if founders of that camp would consider me one of them…
I guess I’m for the wearing of slippers AND the carpeting of the world. I’m for both.
Am I a straddler?
A few years ago, I would say, “Fluffy is the kind of guy who…” and fill in the blank with any number of things that are now, no longer true. Is he still the same child? Or did he, fundamentally, change? Things that I and a number of autism specialists would have identified as expressions of his autism have changed and even disappeared.
Fluffy his Aspergers? No. Am I trying to get rid of his Aspergers by teaching him? No. Will he still have Aspergers if he, one day, behaves in ways that are not Aspergian? Who knows. Does it matter?
Well, only if the goal of clearing away the confusion and fear that the Aspergers brings to his interactions in the world becomes synonymous with what is required in order to be accepted.
In other words, what if Fluffy grows up extremely Aspergian? Is that going to be okay with me?
There is nothing that Fluffy could do or say that would diminish my love, admiration and delight in him. But motherhood has brought with it this passionate preoccupation for my son’s happiness. I don’t care if he’s as particular and unusual as they come, as long as his life is working for him, or as long as he feels he’s got a reasonable hold on how to move in that direction.
That's what parents want for their kids. And when that doesn't happen, there is pain.
Somehow, when you have a child on the spectrum, this has become not okay for parents to talk about. Why not?
I think fear drives the need to simplify. If we take away the fear, we can allow for much more complexity in the conversation.
I work towards a world that makes a place for everyone, that seeks to shine the light on discrimination, cruelty, ignorance and intolerance. I’m not out there, working in the public eye but rather in here, the micro-community of our own home and neighborhood, a very small circle of family and friends.
I don’t like or dislike autism. I’m very interested in it. Fluffy’s version of autism is an everyday part of my life. I’m better for my experience with our version, not just for the obvious fact of my son's precious presence in my life but for what I’ve learned over the last few years, specifically about narrow places within myself that needed widening.
I guess that’s where I fit in, walking alongside my son, straddling the lines in the talk of autism.