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.

 

Advertisements

When I Am Big Again: A Friendship Spans Several Generations

Janusz Korczak was famous for his ability to connect with children, his most poignant example being his treatise, When I Am Little Again.   This time, in a heartwarming recent article, it was a four-year-old girl whose empathy for seniors led her to connect to Mr. Dan, who in turn was ready to open his heart to someone several generations younger.  Their bond grew strong and life-changing, for both.

840c1ebf931fd103b3677ce2ab5ede849caeeb33Two strangers, a little girl and an elderly man, at least two generations apart, open their hearts and find companionship.

 

The Refugee Crisis: It’s About Mending, Not Building Fences

When I created this blog, it was not my intention to use it as a political mouthpiece.  Recent events in the political arena, however, have been anything but typical.  I’ll come back to that in a moment.

Even where there are walls, there should be open doorways.

Even where there are walls, there should be open doorways.

Last week, a heart-rending photo of a little boy washed up on the beach received tremendous exposure, thanks to the power of the social media.  There is no need to display the photo here; I am sure most readers know exactly which photo I am referring to.  As with all warfare, children are disproportionately affected.  Among huge numbers of refugees fleeing the despair that is Syria, Iraq, Iran, and parts of North Africa are more children than anyone can count, on which the UNHCR has reported.  That little Syrian boy – here is who he was.  At least that once innocent child from Syria on the beach now has a name, Aylan Kurdi.  Beyond the love of his parents, he had little else.

About those recent political happenings… The ones I am referring to are the insidious and pugnacious remarks by Donald Trump in his quest for his presidential nomination.  He and his GOP counterparts are racing to score political points, ranting about the dangers “Mexican rapists” pose (as the true ignorant bigot he his, Mr. Trump wraps up Mexicans, Hondurans, Salvadorans, Guatemalans, and other Latinos in a single stereotyped adjectives), while a genuine crisis looms across the Atlantic, one not seen since the dark days of Nazism.  Their diatribe trivializes the unfolding tragedy of the refugees, the families, and their children, of which that little Syrian boy is an example.  The whole spectacle is sickening.  What we now confront is no less than moral catastrophe.  For now, a growing number of Democrats in Congress are urging the US to do its part.

Individuals are also being called on to do their part.  After all, says New York Times columnist Nicholas Kristof, these refugees are people who could be us and probably were our parents or grandparents.  “Love the stranger, because that stranger could be us,” extols Rabbi Jonathan Sacks.  Rabbi Sacks brought up the Kindertransport during an NPR interview, when Nicholas Winton organized the transfer of more than 10,000 Jewish children to England, saving their lives from the maws of the Nazi monster.

Hideous cartoons such as this are what follow when solipsistic individuals hijack important social issues to serve their own narrow ends.

Hideous cartoons such as this are what follow when solipsistic individuals hijack important social issues to serve their own narrow ends.

For political games in the US, it needs to be “Game Over.”  As Nobel Laureate Malala Yousafzai urged, we need to call on our leaders, our representatives.  And Charity Navigator has set up a page to help donors decide on a charity that would put funds to best use.  “Tear down that wall!”  Now is the time for people to come together for all of humanity and mend fences, not build them.