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….

Meet Julia, Who Happens to Be Amazing!

Julia autism autistic Sesame Street acceptance awareness

Julia, the new Sesame Street character with autism, has already made friends on this wonderful children’s show, offering an example of acceptance of our differences.

Ah, yes – I am old enough to remember when Big Bird, Bert and Ernie, Cookie Monster, Oscar the Grouch, and all of Jim Henson’s other beloved Muppet creations were brand new, resplendent in their Technicolor glory on my aunt and uncle’s RCA color television set, the one big enough to be a bedroom dresser and, like one, encased in warm wood.  However, even my younger readers would have also grown up on Sesame Street.  In fact, young and very young audiences in more than 150 countries around the world watch this all-time classic show, nearly a half century after it first aired in 1969.  Back in the year in which Neil Armstrong first set foot on the moon, Sesame Street was a champion of inclusion.  And in that proud tradition, the highly respected show on October 21, 2015, launched “Sesame Street and Autism.”  This far-reaching initiative has opened to considerable acclaim.  The timing is also notable, in light of the astonishing new book NeuroTribes, which not only counters the stigma of autism, but also presents the case for full acceptance of people with this different kind of mind.

Through the catchy “The Amazing Song,” Sesame Street raises autism awareness and, and more important, acceptance of our differences.    Christine Ferraro, who wrote the lyrics to the song, explains her connection to autism, in that she has a brother on the autism spectrum.  This fact inspired her to feature siblings in the video and other instructional materials, as amazing children have amazing brothers and sisters, who may need a little reassurance.  “Every kid is an original; we’re all one of a kind   We’re all as different as can be, but in some important ways, we’re all the same  – we can all be friends, because there’s so much we can share.  We all have feelings     We all need a friend who can understand.”   Oh, by the way, one of the children conveys his messages via an alternative and augmentative communication (AAC) device, while another uses American Sign Language.

In the highlight reel, Julia says, “Lots of kids have autism.”  And, she adds, “That means their brains just work a little differently.”  Julia then introduces us to her “real-life” friend Nasaiah.  She points out that his mom helps him learn how to play with other boys his age.  Later on, we meet Jasmine, who with her parents, help her younger sister, Yesenia, with everyday self-care activities.  And there is Louie’s father, who explains how his son made him “so much a better person, a better father.”    Further on, the mom of another child says, “I just think he looks at the world in a very different way than we do.  I don’t think it’s a bad way…. I think it’s amazing.”  According to Sesame Street executive Sherrie Wilson, “Families with autistic children tend to gravitate toward digital content, which is why we created Julia digitally.”

In “Sesame Street and Autism.  Family Time with Grover,”  the beloved blue Muppet introduces us to Angie.  Angie, like many other children, a very special way with her younger brothers.  Although they are twins and both have autism, they are very different personalities.  This is perhaps the best testament to the well-proven adage, “When you have met one person with autism, you have met a person with autism.”

Frank Campagna, the writer of the popular and highly respected blog “Autism Daddy,”  is one of the video producers at Children’s Television Workshop.  After the birth of his severely autistic son, he sought ways in which to spread autism awareness through the award-winning children’ show as well.

Christopher Jackson, one of the writers and artists of Sesame Street and Autism, has a son with autism.  He talks of his “beautiful struggle.”  His son’s loving nature inspired him to partake in this endeavor.

The Autism Self Advocacy Network (ASAN) assisted in the creation of Sesame Street and Autism.  In its policy statement, the advocacy organization states, “Sesame Street should be commended for reaching out to and focusing on the many voices of the autistic community… aimed at ending stigma and increasing understanding and inclusion of autistic children.”

Sesame Street and Autism offers resources for everyone – children with autism, their parents, and children and parents of children who do not have autism:

Even children who are limited in their ability to express their thoughts and feelings verbally can sing along:

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….

World Autism Awareness Month & Day: A Call for Advocacy and Understanding

A ribbon made of multicolored puzzle pieces.  It 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 (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.

 National Autism Awareness Month is a public call for greater understanding, appreciation, and advocacy for persons with autism.

     Autism Awareness Month first came to be about 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 ASD is provided the opportunity to achieve the highest quality of life.”  This year, the Autism Society seeks to go beyond awareness and encourage the public to play an active role as advocates, to speak out for inclusion of people with autism in school and community, embracing acceptance and engaging in an appreciation of their talents and gifts and for what these children and adults are capable of.

In addition, April 2 is designated World Autism Awareness Day, as a result of a 2008 U.N. resolution (first proposed by Qatar).  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.”  These advocates and activists prefer the completed puzzle over the single puzzle piece that is a trademark of Autism Speaks.

An astonishing video from a television documentary has recently made the rounds via the social media.  It shows how a Carly, a teenage girl with autism, who grew up nonverbal, was finally to express her inner voice that had been captive for over a decade.  It proves how much there is inside children like her.  Her message would be one we should all listen to.

Early Signs of Autism
According to the U.S. Centers for Disease control, early signs of autism include the following, and early intervention is urged:

  • Does not babble or coo by 12 months
  • Does not gesture (point, wave, grasp) by 12 months
  • Does not say single words by 16 months
  • Does not say two-word phrases on his or her own by 24 months
  • Has any loss of any language or social skill at any age

World Autism Month is a call for all of us – and society at large – to understand and appreciate children and adults on the autism spectrum and, according to one blogger, to advocate for their parents as well.

Did You Know?

  • In 2014, the U.S. Centers for Disease for Disease Control estimated the prevalence of autism as being 1 in 68 births.
  • Autism comes from the Greek autos” meaning “self.”   Swiss psychiatrist Eugen Bleuler in 1910 used the New Latin term autismus to describe schizophrenic symptoms of children; US psychiatrist Leo Kanner first used the term autism in 1943.
  • Asperger’s syndrome is named after Austrian pediatrician Hans Asperger, who in 1944 first described the symptoms in children he was observing.
Asperger Asperger's syndrome advocate psychiatrist physician

Asperger’s syndrome is named for Hans Asperger, who was the first to describe the condition. He did not live to see this honor.