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.”
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.”
On March 31, 2017, the U.N. held conference on multiple aspects of autism, Toward Autonomy and Self-Determination, which included the following:
- Supported versus substitute decision making
- Individual milestones and legal capacity
– Independent living through early intervention and college
– Managing relationships and parenthood
– Vocational training and employment
- The U.N. 2030 agenda “Commitment to leave nobody behind.”
In welcoming everyone, 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. Continued Ms. Gallach, “When [people with autism] enjoy equal opportunity for self-determination and autonomy, persons with autism will be empowered to make an even stronger positive impact on our shared future.”
U.N. Secretary-General Antonio Guterres could not be present, but he prepared a statement: “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:
- De-pathologize autistic behavior (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.
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
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 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:
- “Make it Stop.” This is a brand-new awareness video to foster understanding of people with autism.
- “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!”
- “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.
Furthermore, Sesame Street will debut Julia, a character with autism. This event will be covered in a later article.
And some noteworthy facts on autism:
- 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.
With a sincere effort of autism awareness, we will be able to treat this population with the dignity they deserve.
The late comedian Stella Young coined the phrase “inspiration porn” to describe the act of calling people inspirational solely because of their disability. The US Paralympic team, with 22 gold medals to its credit so far, is doing quite well without the disability label.
This fine piece by the Ruderman Family Foundation offers a good perspective. And an earlier piece on Salon covered inspiration porn in sports. Positive sports images of disabled athletes that do not focus on the subject’s disability “normalize” disability, as a form of inclusion. Longtime disability advocate Andrew Pulrang had three criteria, among them focusing on the good deeds of able-bodied people rather than on the abilities of the disabled person. Another way of determining whether an article or image is inspiration porn is whether its meaning would change if one left out the disability.
Inspiration porn disrespects full inclusion and everything we as an agency stand for.
Several recent and forthcoming films and television programs will be featuring people with disabilities, also enhancing public awareness of these diverse conditions. This news is noteworthy, as the TV and film industry has come under criticism for hiring non-disabled actors to play the parts of people with actual disabilities. Last month, a white paper published by the Ruderman Family Foundation found that nearly all roles of people with a disability are played by non-disabled actors.
Two noteworthy television shows and a movie are coming this fall:
- The A Word, an acclaimed TV program about a boy with autism and his family will be airing on cable this fall.
- Speechless takes on the challenge of accurately portraying a child who is nonverbal.
- Po, a film on a 12-year-old boy on the autism spectrum deals with challenges, love, and acceptance life can offer.
In addition, Megan Bomgaars, star of Born this Way, has gained international recognition. By the way, the talented young woman has Down syndrome.
And let us remember the “good guys,” namely the charming new autistic character Julia from Sesame Street and the film Finding Dory, which has earned wide acclaim among reviewers and the American Autism Association.
Apple releases a short film: The true meaning of autism awareness and acceptance: giving a child with autism a voice. “Not being able to speak isn’t the same as having nothing to say,” says Tami, the mother of Dillan, a 16-year-old with autism. Other outward appearances are equally deceptive: children like Dillan certainly do not lack intelligence.
In an effort to provide the public with important information during Autism Awareness Month, leading academic publisher Wiley has made more than 100 free research articles on autism from Autism Research and other leading journals in neuroscience, psychology, and education available for April.
A major meta-analysis: Ability and Disability in Autism Spectrum Disorder: A Systematic Literature Review Employing the International Classification of Functioning, Disability and Health-Children and Youth Version – de Schipper – 2015 – Autism Research – Wiley Online Library
In NeuroTribes, veteran journalist Steve Silberman chronicles the history of autism and Asperger syndrome, along with the lives and work of the two physicians who documented these conditions, so prevalent today but virtually unknown before World War II. Silberman argues for nothing less than the (re)consideration of autism and Asperger syndrome as different ways of thinking, alternative ways in which the human brain works. This philosophy is known as neurodiversity, one embraced by much of the disability advocacy community. The idea, however, is not entirely new. A Viennese physician by the name of Dr. Hans Asperger recognized the potential of the children in his care who presented with the then mysterious condition that today bears his name… back in 1943. That was a time when such ideas, to say the least, were considered dangerous and punishable by death under the Nazi regime. It’s a gripping history!
Equally astonishing is that Dr. Asperger remained virtually unknown for decades after his ground-breaking paper, which was not translated into English until 1991 (by Uta Frith, in the volume on the right) and has not been republished since then.
Please watch this space for reviews of both these books, along with another new book (also 2015), Uniquely Human: A Different Way of Seeing Autism, by Dr. Barry Prizant.
Though cerebral palsy is usually a debilitating condition, there are many people who have gone to accomplish great things in an equally wide variety of fields and endeavors.
Back in 1963, Marie Killilea wrote a book about her daughter, Karen. This book did much to let the world know that children with cerebral palsy are not deranged monsters or subjects worthy of a circus freak show. The author was a fierce advocate for her child, at a time when advocacy was more the exception than the rule.
Another work that has done a great deal to spread awareness and appreciation of cerebral palsy is King Gimp, an Academy Award-winning documentary on the noted and very talented artist with cerebral palsy, Dan Keplinger.
We salute all these remarkable people on September 4, World Cerebral Palsy Day.