“What would happen if the autism gene was eliminated from the gene pool?
You would have a bunch of people standing around in a cave, chatting and socializing and not getting anything done.”
― Temple Grandin, The Way I See It: A Personal Look at Autism & Asperger’s
World Autism Awareness Day – which falls on 2 April every year, was established by the United Nations in 2007. The theme of the day this year is : “Transforming the narrative: Contributions at home, at work, in the arts, and in policymaking.” ChatGPT defines the word autism as follows ” autism, also known as Autism Spectrum Disorder (ASD), is a neurodevelopmental disorder that affects communication, social interaction, and behavior. It is called a spectrum disorder because the severity and symptoms of the condition can vary widely from person to person”.
The original intent of establishing Autism Awareness Day was to encourage international support, compassion, and understanding for the rights of people with autism. On 2 April 2023 the Secretary General of the United Nations in his message said: “On World Autism Awareness Day, we celebrate the contributions of persons with autism and renew our resolve to advance their inherent rights. Despite important progress, persons with autism continue to face social and environmental barriers to the full exercise of their rights and fundamental freedoms, in line with the Convention on the Rights of Persons with Disabilities and the 2030 Agenda for Sustainable Development. We must do better – by promoting inclusive education, equal employment opportunities, self-determination, and an environment where every person is respected. And as we do so, we also recognize the role of families, caregivers, and support networks in the lives of persons with autism. Today and every day, let us fully recognize the active and diverse contributions of persons with autism to our societies – and let us work together with persons with autism to build an inclusive and accessible world for all”.
Last year, President Biden added more words of support and understanding to the above plethora of compassionate verbiage in his Presidential Proclamation for World Autism awareness Day. He reaffirmed his Administration’s “commitment to equity for people on the autism spectrum across all races, ethnicities, genders, cultures, and geography in access to services, inclusion of people with lived experience in research, opportunities for competitive integrated employment, and the ability to pursue their life interests free of discrimination”.
If one were to “transform the narrative” as this year’s theme goes, one has to burrow through the blizzard of conciliatory and seemingly compassionate words that have been used in the above statements that are calculated to exude an aura of profound empathy and proactive action. Words such as “inherent rights”; “social and environmental barriers”; “inclusive education”; “equal employment opportunities”; “rights and fundamental freedoms”; “respect”; “equity”; “access to services”; “inclusion of people” all cry for implementable legislative and treaty action.
In the United States, there are several pieces of legislation. For example, Individuals with Disabilities Education Act (IDEA) ensures that children with disabilities, including autism, receive a free appropriate public education (FAPE) in the least restrictive environment possible. IDEA provides funding for special education services and requires individualized education plans (IEPs) for students with disabilities. The Americans with Disabilities Act (ADA) prohibits discrimination against individuals with disabilities, including autism, in areas such as employment, education, transportation, and public accommodations. It requires that reasonable accommodations be made for individuals with disabilities. Autism CARES Act: provides funding for autism research, education, and intervention programs. It also established the Interagency Autism Coordinating Committee (IACC) to coordinate federal efforts related to autism. Finally, The Affordable Care Act (ACA) requires insurance plans to cover essential health benefits, including behavioral health treatment, for individuals with autism. It also prohibits insurance companies from denying coverage based on pre-existing conditions, including autism.
From the standpoint of treaty law, The Convention on the Rights of Persons with Disabilities is a multilateral treaty, adopted by the United Nations, which recognizes the rights of persons with disabilities, including those with autism, to live independently, participate fully in society, and access education, employment, and healthcare.,
How far have these instruments offered autistic persons relief in pursuing the key words used above to define their rights? There are some instances in the United States. In Olmstead v. L.C. (1999) The United States Supreme Court affirmed the right of individuals with disabilities, including those with autism, to receive services in the least restrictive environment possible. The case involved two women with mental disabilities who had been institutionalized for years and were seeking community-based services. In the 2009 case of Greer v. Rome City School District the parents of a child with autism sued a school district for failing to provide him with a free appropriate public education (FAPE) as required by the Individuals with Disabilities Education Act (IDEA). The court ruled in favor of the parents and ordered the school district to provide compensatory education services to the students.
More recently in 2012 in Doe v. Lakeview School District parents of a child with autism sued a school district for failing to provide their son with a FAPE. The court found that the school district had violated the IDEA and ordered it to provide compensatory education services to the student. Five years ago, in the case of Pennsylvania State Education Association v. Commonwealth of Pennsylvania a group of autistic students and their families sued the state of Pennsylvania for failing to provide adequate education and services for students with disabilities, including autism. The court found that the state had violated the IDEA and ordered it to develop and implement a plan to improve services for students with disabilities.
It was Mathew Dicks who once said: “You have to be the bravest person in the world to go out every day, being yourself when no one likes who you are.”
The first step in “transforming the narrative” would be to understand the above quote. The second step would be to be aware that autistic persons do not have “concepts” between things and the world. For instance, neuro- typical people would insert one or more concepts between a thing, idea or object and reality. A pioneer in this field was Saul Kripke a philosopher who wrote in the late 1950s on the challenges facing autistic persons. In his book “Naming and Necessity” and his paper “A Puzzle About Belief” Kripke expounded the philosophy of language where his work on autism focused on the relationship between language, meaning, and social cognition.
According to Kripke, a person who is in the autistic spectrum would have rigid designators which are the same in all possible contexts. For example, a neuro typical would identify a flautist as a “clever” or “mediocre” musician whereas an autistic person would consider him just a flautist without an intervening concept.
This makes it difficult for an autistic person to understand beliefs and mental states of others. In “A Puzzle About Belief,” Kripke argues that people with autism may have difficulty with what he calls “theory of mind,” which is the ability to attribute mental states, such as beliefs and desires, to oneself and others. Kripke suggests that this difficulty may be related to the use of rigid designators and the limitations of language in representing mental states.
The initiative of 2007 to designate 2 April as World Autism Awareness Day came from the United Nations – the world body of 193 countries. Yet, as per the World Health Organization, as of 2021, only 27 countries have national autism plans or strategies. Also, according to the World Health Organization. in 2021, about 1 in 160 children worldwide was identified with the autism spectrum disorder.. It is quite disheartening that such a prevalent condition has been proactively addressed by only 27 countries. This is despite the fact that in 2018, WHO launched the “Global Autism Public Health Initiative” to promote early detection, diagnosis, and intervention for autism spectrum disorder (ASD) globally. Additionally WHO works to promote inclusion and integration of individuals with ASD into their communities and society as a whole. Furthermore, WHO supports research on ASD to better understand its causes, prevalence, and effective interventions. WHO’s overall focus is seemingly on improving the quality of life for individuals with ASD and their families, promoting awareness and understanding of ASD, and supporting research to better understand and address this condition.
The answer does not lie in just “including” autistic persons in society or in the usual educational curriculum without planning and understanding this unique community. In the words of Paul Collins “Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that hammering is hard work. It’s that you’re destroying the peg.”
This is what the 166 members of the United Nations seem to be doing. Why are they dragging their feet?