April --- Autism Awareness Month

As a matter of fundamental rights, governments must invest in stronger community support systems, inclusive education and training programmes, and accessible and technology-based solutions to enable persons with Autism to enjoy the same rights as others.

by Ruwantissa Abeyratne

“ It is better to be a misfit than be a spare part in society”… Muriel Gray

April 2nd is World Autism Awareness Day, and the month of April is dedicated to Autism awareness. Its purpose is to affirm and promote the full realisation of human rights and fundamental freedoms for individuals with Autism, ensuring they are treated equally with others. Autism is often misunderstood, misconstrued  and misinterpreted to mean that those who are autistic exclude themselves from neurotypical society – presumably based on their introspective behavioural conduct – where in fact the exact opposite is  true.

[ Photo: Pollyana Ventura/Getty Images]

Secretary General of The United Nations Antonio Guterres, in his message on Autism Awareness Day said: “ World Autism Awareness Day is a moment to recognize and celebrate the important contributions of autistic people in every country and community.  But around the world, they continue to confront barriers to their fundamental rights to education, employment and social inclusion — as called for by the Convention on the Rights of Persons with Disabilities and the 2030 Agenda for Sustainable Development.

As a matter of fundamental rights, governments must invest in stronger community support systems, inclusive education and training programmes, and accessible and technology-based solutions to enable persons with Autism to enjoy the same rights as others. 

Scaling-up support and investment in countries and communities requires working hand-in-hand with persons with Autism and their allies. Today and every day, let’s unite to realize their rights, and ensure an inclusive and accessible world for all.”

Muriel Gray, a renowned figure in Scottish literature, broadcasting, and journalism, conveyed the idea that being a misfit is preferable to being considered extraneous within society. This viewpoint likely stems from her strong conviction in the significance of individuality and sincerity. It implies that embracing one’s distinctiveness and diverging from societal conventions can result in a richer and more authentic life. Gray’s advocacy for this concept may aim to inspire individuals to celebrate their uniqueness instead of sacrificing their identity and personal fulfillment to meet societal norms.

The idea that being an outsider is preferable to fitting in seamlessly with societal norms is commonly associated with the Italian writer and thinker Italo Svevo, also known as Ettore Schmitz. Svevo is renowned for his work “Zeno’s Conscience” (alternatively titled “Confessions of Zeno”), a novel delving into the complexities of human identity and self-awareness

Naomi Klein, in her book “Doppelganger: A Trip to the Mirror World says: “ Despite billions spent on Autism research, we do not know why some brains are wired differently.  We do have some answers, however, to the question of why there has been a dramatic increase in diagnosed cases of Autism over the last decades,  to the point that that the Autism and Developmental Disabilities Monitoring Network…reports that 1 in every 44 eight year olds was diagnosed with Autism in 2018 up from 1 in every 150 in 2000. One answer is that the clinical definition of Autism  expanded significantly in the 1990s to include many neurotypical people who would have been previously excluded”

Klein discusses the origin of the term “Autism,” noting its initial introduction in the late 1950s as a rare and extreme condition. Child psychiatrist Lorna Wing is credited with this introduction, although the symptoms were initially identified by psychiatrist Leo Kanner in 1943. Kanner described autistic children as possessing good cognitive abilities but living in their own worlds, displaying repetitive behaviors, fixating on objects, often having limited speech, and struggling with basic self-care tasks. Wing believed Kanner’s characterization was overly narrow and failed to include many neurotypical children who required support. Consequently, she broadened the concept of Autism from a specific set of symptoms to a spectrum, thereby introducing Autism Spectrum Disorder (ASD).

Wing based her opinions on the research of an Austrian pediatrician – Hans Asperger – who had studied Autism concurrently with Kanner but in Vienna. In the 1990s, largely due to Wing’s contributions, the term “Asperger’s Syndrome” was included in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders as a subtype of “high-functioning” Autism. However, this distinction would later be subject to scrutiny.

Tom Shakespeare, a leading authority in the realm of disability studies, who was recently interviewed on BBC’s HARDTALK, provides valuable perspectives on comprehending ASD. While Shakespeare primarily delves into disability within a broader context, his input sheds illumination on numerous facets of Autism, encompassing societal perceptions, identity, and the concept of inclusion.

Shakespeare’s viewpoint on Autism underscores the significance of recognizing it as a natural divergence of human diversity rather than merely a medical affliction. He champions the social model of disability, positing that disability emerges from the interplay between individuals with impairments and the societal hurdles they encounter. When applied to Autism, Shakespeare underscores how prevailing societal attitudes, biases, and lack of support can compound the obstacles confronted by those on the Autism spectrum.

A central tenet of Shakespeare’s argument is the imperative to comprehend Autism within a broader societal framework, acknowledging the varied experiences and requirements of individuals with Autism. He contests the characterization of Autism as solely pathological, instead stressing the importance of comprehending and accommodating neurodiversity. This perspective advocates for moving beyond the realms of stigma and medicalization towards embracing and integrating individuals with Autism.

Moreover, Shakespeare critiques the prevalent deficit-oriented approach towards Autism, which accentuates shortcomings rather than recognizing strengths and capabilities. He contends that this deficit-based viewpoint contributes to the marginalization and isolation of individuals with Autism from society. Instead, Shakespeare advocates for an approach rooted in strengths, which acknowledges and celebrates the distinctive talents and proficiencies of individuals on the Autism spectrum.

Additionally, beyond his scholarly contributions, Shakespeare’s advocacy underscores the significance of championing the rights and welfare of individuals with Autism. He underscores the necessity for inclusive education, employment prospects, and social support systems to facilitate the full participation of individuals with Autism in society on their own terms. Furthermore, Shakespeare advocates for heightened awareness and comprehension of Autism among the broader populace, challenging stereotypes and fostering a culture of empathy and acceptance.

In essence, Tom Shakespeare’s insights into Autism furnish a comprehensive and nuanced comprehension of the condition, underlining the significance of societal, cultural, and structural influences in shaping the experiences of individuals on the Autism spectrum. By advocating for a social model of disability and endorsing neurodiversity and inclusion, Shakespeare’s endeavors contribute to forging a more equitable and supportive milieu for individuals with Autism and other disabilities.

My Take

My experience with the “Autism spectrum” – as is now known – is that persons who are considered to be in this group want to be included in society rather than be excluded and relegated to the background.  They yearn to be independent in their own way and achieve goals like anyone else.  They are sincere to the point of embarrassing the hypocrisy that infests the neurotypical world. They are individualistic.  However, they may need a push to make them independent in the world.

Dr. Simon Baron-Cohen, Director of the Autism Research Center at the University of Cambridge is credited with having said “Autism is an example of neurodiversity… differently wired brains lead to different profiles of strengths and challenges …. They’re just different. People with Autism are asking for acceptance and respect”. 

One of the effective and acknowledged therapies in this regard is Applied Behaviour Analysis (ABA)  which  increases language and communication skills; improves attention, focus, social skills, memory, and academics and  decrease problem behaviors.  Autism Speaks Canada– a global entity for understanding and acceptance of Autism – says: “The methods of behavior analysis have been used and studied for decades. They have helped many kinds of learners gain different skills – from healthier lifestyles to learning a new language. Therapists have used ABA to help children with Autism and related developmental disorders since the 1960s”.

In an earlier article I wrote, I said  that Autism is not a “disability”; and it is not about fitting the person in in a regular education set up. They have abilities of their own.  Their education should sensitise them  to express adolescent and adult love all of us feel: the musky smell of raindrops on the face of their fiancée; the smudgy mental mist that blotches our secrets; the feel of the heavens of affection drenched in the melodious songs of angels that we encounter, and their laughter and tears should be  good fortunes of tomorrow.  They should be able to sing with  feeling – that their songs skim the river of dreams and the valley of waves, in the bliss of life.

They should feel that their sorrows of the mind are drenched in love and flowers bloom in the sands of their despair. They should have the confidence that one day, like everyone else, they would adorn the love they discover with seven sparkling necklaces that appeared  in their dreams and take her home.

They should be able to smile with their eyes when blue doe-eyes smile at them.  This should not be only in their dreams.

And this, I wish for my son.