I will begin with the words of my son, H, when he was 13: “I am not a tragedy and autism is a part of who I am. Mom – autism means I think differently… and that is a good thing. Isn’t it?!?”
As a parent of an Autistic son, and as a Special Education Teacher, I believe in the importance of advocating for diversity, seeing children (and adults) from a strength-based perspective, and working to shape our society to be a better fit for those who experience the world differently.
I want my son and my students to be empowered to advocate for themselves. I want him to have pride in who he is this very day. I want to be focused on his strengths and the positive things he brings to the table – or to a relationship, the science fair, or even the local Lego contest. Some of those positives may be because he is Autistic – or not – really I have no need to delineate this.
I realize autism is a part of what makes my child who he is, but that it does not paint a complete picture. He cannot be separated from being Autistic – and I don’t want him to feel that he should, but neither does it completely define him. The thing is, however… the VERY IMPORTANT thing… is that I do not want him to feel shame! I do not want him to feel that he is less because he processes and responds to the world differently than non Autistic people – and I think that there is a real concern that this might be the case.
I see this young man work so hard to do the things that a non Autistic child can do intuitively. I understand that this doesn’t mean that a non Autistic child will not struggle, but that is not what this post is about. I also understand that there are some families who face enormous daily stresses and challenges with their Autistic children, and it is not my intention to diminish or underplay these challenges… but comparing children and their challenges is also not my intent.
It is important for us to shift attitudes in order to lift the burden and heaviness that shame can cause – and I want to prevent that shame or potential shame from scarring my vulnerable child… or yours…
The experience of being Autistic affects my child… it affects him deeply. But more than this – my response to him affects him as well. The responses, attitudes, and judgments of other children affect him, as do the responses of teachers, relatives, family friends, neighbours, and the attitudes and judgments of strangers…
…and the messages of big autism organizations
…and the responses of government!
For him negativity about autism is an attack upon his very being – in that very moment – and likely resonating on some level and carried with him into his future. This is as much of a threat to my child as the schoolyard bully and I want others to consider how it could manifest his sense of himself as Autistic in a way that creates anxiety, pain, and a sense of inevitable failure.
I worry about the way that he was at times punished at school for his lack of social understanding and was given the message (even if perhaps it was only implied in the reaction of others) that he was bad. I worry about the lingering effects of that message on his development of a sense of self. I worry that my child may feel that he lacks worth – or that he is not good enough. I worry about the shame my child might feel, and I find myself observing H closely to try to measure and determine the depth of its effect.
I worry about the messages of the media proclaiming that autism is a curse, a burden, an epidemic, or a tragedy – and that my child hears and processes messages like these. I have to work hard to undermine the effects of this and loosen shame’s hold. This shame part really tears me down to my core… and sometimes I worry we do not have enough time – enough awareness – enough insight and understanding to mitigate the potential damage.
Part of the work we must do is to take a stand against organizations like Autism Speaks for spreading fear and hate and shame, and for actively silencing Autistic people like my son, like the students I teach, and like so many of my wonderful friends.
I am a fan of finding the middle ground, and of the process of compromise, but diplomacy does not have a place here.
We’re done with messages of fear, hate, and exclusion! It’s time to silence Autism Speaks!
If my goal is to raise my son to be a man who feels that his experience as an Autistic person is worth sharing and definitely worth listening to, and it is, then we must shift attitudes. It is this shift in attitudes, framed as an honouring combination of support and respect, that will result in a changed environment. As a Special Education Teacher – an important part of my role is adapting curriculum and environments to honour the developmental strengths and stretches of individuals.
What I am saying is that in addition to supporting the development of people with strategies and supports to navigate their way, our goal is to adapt the environment to make it a better match, and remove potential barriers. Sometimes this means changing our language, increasing response time, meeting sensory needs, supporting alternative forms of expression and communication, ensuring and protecting the space/pace/place to recharge, and a myriad of other things.
Much of my work as an educator is focused around working with other educators to increase their understanding of the experience of students who are Autistic. In this way I (along with so many others) am working to build ramps: not ramps of wood or steel, but social and emotional ramps built of strategies and understanding.
In this context, we are working to shift the environment. As a society, we are moving toward a more general acceptance that this is expected, and we support these goals within the context of the classroom and the school.
However, Autistic children grow up to be Autistic adults, and we need to extend these attitudes of acceptance and support beyond the school, to build structures and frameworks in our workplaces and greater communities.
There is no middle ground here: the messages and actions of Autism Speaks, fueled with fear and stigma, are in direct opposition to these goals.
I want my son to make a statement like I shared at the opening of this post and be able to leave off the questioning tone.
I want to surround my child with positive messages…
about who already he is…
without changing one little thing…
and then move on from there…
and I invite you to do the same…
Note: Parts of this article were previously published on 30 Days of Autism under the titles: To the Committee on Oversight and Government Reform: Autism and Reframing Tragedy (December 4, 2012) and Autism Positivity… and the motivation to reframe “tragedy” (April 25, 2012). It is my hope that in the near future the reworking of these messages will no longer be needed, and that they will be laid to rest and viewed as outdated artifacts of a no-longer-ableist society.
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30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.
©Leah Kelley, Thirty Days of Autism (2013)
Thirty Days of Autism 