Autism Advocacy: Beyond Awareness

Wow…the internet’s gone crazy this week as scores of people focus on Autism Awareness. Throughout the month of April there will be campaigns, speeches, walks, galas, telethons and blog posts trying to grab your attention to think about Autism Spectrum Disorder.

So…once they have your attention, then what?

I have heard from many parents over the last few weeks who aren’t totally comfortable with the whole spectacle and are more interested in people moving beyond awareness to acceptance, appreciation and help.

The UN declared April 2nd World Autism Awareness Day as a way “to highlight the need to help improve the quality of life of children and adults, who are affected by autism, so they can lead full and meaningful lives.”

Over the next few weeks, I will be sharing thoughts from a variety of people who have some practical ways to make that goal happen and to show us how we can move beyond awareness to real advocacy.

2015-04-01_1034The following is from a series of interviews by Steve Silberman, an investigative reporter who wrote the book, Neurotribes.

Lydia Brown is an Autistic student at Georgetown University who interns for the Autistic Self Advocacy Network. She blogs at Autistic Hoya.

  1. Accept us. Autism is a part of who we are. As sure as skin color or sexual orientation, we cannot change being Autistic. Acceptance starts by understanding that we are not broken, defective, or diseased. We do not need to be fixed or cured. There is nothing wrong with us. Yes, autism is a disability, and yes, some Autistic people are very severely disabled. Accepting our autism does not mean ignoring or denying disability; it means accepting us for who we are, as we are.
  2. Lydia Brown

    Lydia Brown

    Respect us. We are people, fellow human beings. We deserve to be treated with the same respect afforded to our non-Autistic peers. Respect starts by understanding that we are full and complete human beings, with individual personalities, life experiences, goals, and preferences. We deserve an education, access to communication, and a place in society as we become adults. We deserve to live without fear of being abused, manipulated, or hurt. We are not less than.

  3. Support us. Because we are disabled in varying degrees and in multiple ways, we need support, services, and accommodations to successfully navigate a world not made for us. Supporting us starts by understanding that we are usually the people who can best define what types of support and services we need, especially once we become adults. Some of us may need services throughout school and or higher education. Some of us need help with seeking and keeping employment. Some of us need help with living independently or semi-independently, or with activities of daily life. Without appropriate supports, we will not have equal access and opportunity.
  4. Include us. We deserve equal access and opportunity throughout the community and throughout our lifespans. Inclusion starts by understanding that we are part of the community and deserve to be included in it. As children, we may not be ready immediately for full inclusion, but full inclusion should be the ultimate goal for every Autistic child. Full integration into the community means living outside institutional or segregated settings and working outside a segregated setting. If we need accommodations or support to fully participate in the community, then provide those accommodations. We need to belong.
  5. Listen to us. Too many conversations about us and issues that affect our lives take place without any of us present. Listening starts by recognizing that we have valid, legitimate, and important things to say about our lives and about the issues that affect us collectively. Like any group of people, we are not homogeneous in opinion or ideology, and this diversity is part of the Autistic community. Yet we must be included in any conversation about us, because decisions made by policymakers, school administrators, and grant reviewers often impact our daily lives and our future outlook. We can speak (or write or sign or type) for ourselves, and it’s time to listen.

This material in this series was originally published in 2012 by from Steve Silberman.

1 Comment

  1. Rachelle Sheely

    My favorite line in this article is “Too many conversations about us and issues that affect our lives take place without any of us present” The point of RDI is empowerment, not doing to or doing for–love the way she drives the point home.

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