Fear, Hate, and Exclusion: It’s time to silence Autism Speaks!

screen-shot-2011-06-18-at-11-34-40-amI 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.Screen shot 2013-11-14 at 6.02.38 PM 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. 

__________________________________________________

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)

About Leah Kelley

Leah Kelley, MEd., Educator, Ed.D. Student, Parent, Activist, Speaker. Writes blog: 30 Days of Autism. Projects support social understanding & Neurodiversity paradigm. Co producer of documentary: Vectors of Autism. Twitter: @leah_kelley Pinterest: http://pinterest.com/leahkelley13/ Facebook: https://www.facebook.com/pages/30-Days-of-Autism-Leah-Kelley/154311301315814
This entry was posted in ableism, Autism, autism stigma, Autistic People Speaking, Educator, Neurodiversity, Parent, Special Education and tagged , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

21 Responses to Fear, Hate, and Exclusion: It’s time to silence Autism Speaks!

  1. Richard Green says:

    We need to find better ways to help our autistic kids relate to others and to help others become aware how best to relate and to understand how these individuals think.

    Like

    • Leah Kelley says:

      Agreed! The absolutely best resource I have found in guiding my practice and giving me insight, as both an educator and as a parent, is the perspectives of Autistic Adults. If you explore my blog roll (to the right ͢ ) you will find links to some amazing blogs and resources written by Autistic people.

      Like

  2. I wholeheartedly agree, Leah! What’s next? How can we make this happen? Autism Speaks is the reason mothers of newly diagnosed children are crying themselves to sleep at night. The fear mongering needs to stop!

    Like

  3. Leah Kelley says:

    That is such a good question…

    For me, the next step is to work to promote and amplify the voices and perspectives of Autistic people. I am convinced we will all be better off when those with the best understanding of the experience of being Autistic (those who are Autistic) are empowered… and their voices are heard and respected…

    Like

  4. Tara says:

    I agree as well. I have high functioning autism and I do just fine except for a few challenges. Last time I checked, I have not made my family go broke and my parents split up for other reasons. I wrote a poem:
    I am Asperger’s Syndrome
    I am Asperger’s Syndrome. I come in many shapes and forms. I am different things to different
    to different people. I am sometimes silent and sometimes I have a lot to say. At first I am off
    putting, but a joy once you get to know me. I am the world to two people who can’t help but love
    me. I am a variety of different things.

    I am Asperger’s Syndrome. Maybe I was created to be the voice for those who don’t have one.
    Maybe I was created to show the world that anything is possible. Maybe I was created to be an
    eye opener for some. Maybe I was created to do things that would otherwise be impossible.
    Maybe I was created to innovate. Maybe I was created to be the creative solution to the
    problem.

    I am Asperger’s Syndrome. I was created to be unique. I was created to do great things. I may
    be socially awkward but can be taught. I may not have all the solutions but may have the one no
    one has thought of.

    I am Asperger’s Syndrome. I don’t know what my life may be for but there are some things I do
    know. I am not broken. I am not inherently bad. I am not unemployable. I am not incapable of
    love. I am not incapable of empathy. I do not need to be fixed, I do not rip families apart nor do I
    bankrupt them.

    I am Asperger’s Syndrome. I am special. I am here for a reason. I am here for something far
    greater than I can understand. I am a person with a voice, a face, and a name. I am not
    something that needs to be cures.

    I am Asperger’s Syndrome and I am me.

    Like

    • colinb897 says:

      Echoing Leah Tara, your poem expresses so much insight.
      I love two themes, amongst others, in your poem. That you are “the world to two people who can’t help but love me”. That you are “here for a reason”.
      It seems to me that the safeguarding and nurturing space Leah would see secured around H and autistic others: has the loving ground you speak of; and intends the collective-world transforming unleashing of what you and autistic others (including me) are here to do.

      Like

  5. Leah Kelley says:

    ❀ Thank you for sharing your wonderful poem, Tara.

    Like

  6. suburp says:

    “I want my son (…) to be empowered to be a self-advocate. 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 ”
    me too. I don’t want my son, who is well aware of his autism, to be ashamed of it or feel guilty or see that people – in the name of ‘autism parents’ – are calling for a WAR on autism rather than promoting LIFE with it.

    Like

  7. Pingback: I am H: This is Autism | Thirty Days of Autism

  8. Leah Kelley says:

    As noted above, this post is a part of the Blog Hop hosted by Down Wit Dat in support of Autistic History Month. Please check out some of the other fabulous posts here: http://downwitdat.blogspot.ca/p/t-21-blog-hop.html

    Like

  9. Pingback: My Money $peaks: A Post Script to ‘Silencing Autism Speaks’ | Thirty Days of Autism

  10. Pingback: My Money $peaks: A Post Script to ‘Silencing Autism Speaks’ | Thirty Days of Autism

  11. Pingback: In the News – November 2013 | The PsychoJenic Archives

  12. Hiro says:

    It’s such a tragedy when ANY CHILD (or any one, for that matter) is told that their existence is a “tragedy.” I honestly cannot even comprehend what makes people think it’s okay to say such hurtful, vile things. I am not a TRAGEDY in my parents’ life because I had malformations in my brain that caused me to have brain surgery when I was 22. My boyfriend is not a TRAGEDY to ANYONE (and most of all to me) because he is an Aspie. I love him for who he is, and if he weren’t who he was… Would I even love him in the same way? Thank you for this post. 🙂

    Like

  13. Leah Kelley says:

    Exactly! Thank you for your important and powerful comment and for sharing your experience, Hiro. I appreciate that the post spoke to you.

    If you haven’t already done so, please check out http://boycottautismspeaks.com/ and the link to the petition and please share with your networks. I believe we can change things…

    Like

  14. Pingback: Rail Against Stigma: This is not a Radical Act! | Thirty Days of Autism

  15. nisha360 says:

    Powerful words by H.

    Like

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