Looking Back on a Month of Autism Awareness… and Appreciation

World Autism Awareness Day

Central to the U.N. Convention on the Rights of Persons with Disabilities (CRPD) is “respect for the inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons… and full and effective participation and inclusion in society” (Article 3). This concept is reflected in this year’s theme for World Autism Awareness Day, “Toward Autonomy and Self-Determination“.

 

On March 31, 2017, the U.N. held a conference on multiple aspects of autism, which included the following:

In the U.S. and throughout the world, the rate of autism is high, affecting children and adults of all socioeconomic and ethnic groups. According to the U.N., “Appropriate support, accommodation, and acceptance of this neurological condition allow those on the spectrum to enjoy equal opportunity, and full and effective participation in society.”

In opening the conference, Cristina Gallach, U.N. Under-Secretary-General for Communications and Public Information, said “We come together to renew our commitment to raising awareness of the rights of persons with autism – to equal opportunity and full participation in society, on an equal basis, with other citizens. To achieve this inclusive society that we aspire to, we must… ensure that the fundamental rights enshrined in the CRPD are respected.” This is a right that has been recognized since the Universal Declaration of Human Rights was declared in 1948.

U.N. Secretary-General Antonio Guterres could not be present, but he prepared a statement, which was read aloud: “On this World Autism Awareness Day, let us play a part in changing attitudes toward persons with autism and in recognizing their rights as citizens who, like everyone else, are entitled to claim those rights and make decisions for their lives in accordance with their own will and preferences. Let us also renew our promise engraved in the 2030 Agenda for Sustainable Development to leave no one behind, and ensure that all people can contribute as active members to a peaceful and prosperous society.”

The keynote speaker, Simon Baron-Cohen, Director, Autism Research Centre, University of Cambridge, was gave an overview of the autism spectrum.

In regard to the “commitment to leave no one behind,” Jackie Pilgrim, a noted disability advocate spoke about dignity. In her work with NAMI Durham she spoke of her organization’s new 8-hour course for police and first-responders to replace the inadequate 1.5 hour course used previously, one for which they have shown “passion” to learn.

Barry Prizant, author of the landmark book Uniquely Human: A Different Way of Seeing Autism, summarized his philosophy:

Uniquely Human

  • De-pathologize autistic behavior (e.g., echolalia, stimming). It’s the way we deal with stress and self-regulate. They should not be repressed or otherwise “managed.”
  • Autism is not a tragedy, it can become one
  • Self-determination begins in early childhood. Children at an early age
  • Let’s look at ourselves.

In other words, “autistic behaviors are human behaviors.”  This landmark book will be covered in the next post on this blog.

Added Micheal John Carley. The best way to help is to examine ourselves and change the way we view people with autism.

An autism research and education organization, Autism Speaks, initiated the worldwide Light It Up Blue, campaign in its effort to raise autism awareness.  Among many in the autism community, both advocates and self-advocates, Autism Speaks is highly controversial, because that organization is seeking a cure, whereas many people prefer to see autism as simply another way of being: “different, not broken.”

 

National Autism Awareness Month

autism_ribbonThat ribbon made of multicolored puzzle pieces has become one the most recognizable symbols of autism in the world.  The various colors reflect the many “faces” of autism, a condition often referred to as the autism spectrum disorder (ASD) because no two people with autism are alike.  (The cognitive abilities of people with ASD range from “nonverbal” to intellectually brilliant.)  The ribbon symbolizes solidarity and hope of a happy, fulfilling life for people with autism.  The puzzle pieces remind us that the condition and the people with it are still very much a mystery.

Autism Awareness Month first came to be some 25 years ago, when the Autism Society of America undertook an effort to promote autism awareness.  The primary objective was to “promote … inclusion and self-determination for all, and assure that each person with autism  is provided the opportunity to achieve the highest quality of life.”

 

Three short films that treat autism awareness and appreciation are worth noting:

  •  “Talking in Pictures.”  This documentary dispels myths and stereotypes… at least as they apply to everyone with autism. “It’s not that we’re doing it wrong, it’s not that we’re autistic enough to fit in with the world’s idea of autism, it’s that the world’s idea of autism isn’t big enough to fit us all in!”
  • “Make it Stop.” This is a brand-new awareness video to foster understanding of people with autism.
  • “Perfectly Normal,” is a film about Jordan, a man with Asperger’s, who discusses his everyday life, of which the New York Times publicized an important excerpt.

 

Appreciating Autism with Julia

Appreciating Autism with Julia

Julia, the new Muppet with autism autistic on Sesame Street autism awareness appreciation

Sesame Street in October 2015 introduced Julia, a Muppet with autism in one of their storybooks. On Monday, April 10, Julia mad her screen debut!

 

Sunny days have become sunnier at Sesame Street with a new kid on the block, a vivacious girl with bright red hair and large, expressive green eyes. Meet Julia. And she happens to have autism. Announced October 2015Julia made her debut on the beloved children’s show Monday, April 10, as part of Autism Awareness Month. In a video to introduce the character, Julia’s friend Abby Cadabby explains, “lots of kids have autism.” And “that means their brains just work a little differently,” she continues.  As the Amazing Song proclaims, this effort by Sesame Street is to promote not just autism awareness, but autism acceptance and appreciation.

(CBS News made the announcement on Sunday, April 2; the following day, Julia was introduced in Congress.  Incidentally, Power Rangers introduced Billy, a blue character with autism.)

 

A Basis on Research and Experience

Noteworthy is that the people who create and enact the show themselves have experience with autism. Frank Campagna, the writer of the respected blog “Autism Daddy” is one of the video producers at Children’s Television Workshop. In his blog, he discusses how, after the birth of his severely autistic son, he sought to bring awareness and acceptance of the condition on the show.  And bringing Julia to life is puppeteer Stacey Gordon, an advocate and a parent of a boy with autism.

A researcher at Virginia Tech, herself a mom of a boy with autism, praises the way Julia doesn’t just talk about autism, but shows her young audience how autism is another way of thinking and being, providing the tools for them to interact with their autistic peers.

 

Resources for Parents

“Sesame Street and Autism” offers a variety of resources for parents, including the following:  Storybook image of Julia, a Sesame Street Muppet with autism

 

Sunny Day
Sweepin’ the clouds away
On my way to where the air is sweet

Can you tell me how to get,
How to get to Sesame Street

Come and play
Everything’s A-OK
Friendly neighbors there
That’s where we meet….