By Dr Shabina Ahmed
April 2nd marks the celebration of the 14th anniversary of the UN World Autism Awareness Day (WAAD). It was instituted in 2007 to increase global awareness of the prevalence and relevant issues of Autism, to stimulate one to learn more about the problem, thereby upholding and standing for the rights of these children for a right-based existence. WAAD is one of only 4 specifically health related UN Observance days, which serves as a powerful advocacy tool.
Autism as a condition was mentioned way back in 1911 by the Swiss psychiatrist Eugen Bleuler, and it was thought to be a psychiatric problem but over the years we have come to the understanding that is a social emotional disorder as expressed by Leo Kanner in 1944. Then Hans Asperger, an Austrian pediatrician, found that most of the children are intelligent, differentiating them from schizophrenia. Today we know it as a developmental problem. Their main areas of deficit are in social behavior, communication, cognition and imagination.
Autism may present as a delayed speech in some cases as early as two years of life, but as they get older, they begin to speak but we need to be aware that this is not a cure-level of autism. What we need to look into, is the long-term development consequences of the applicability of speech and thinking. They begin functioning at a time much behind the normal age of their peers.
They have streaks of abilities and interests and have peculiarities of motivation and joint attention that keep them isolated from their peers. Just as we are all different individuals, so is every child with Autism. They have varied presentations and levels in the symptomatology in social communication development. This led to the term Autism Spectrum Disorder (ASD). Amidst this umbrella term lies the children labelled as high-functioning or low-functioning. But the question is: what is the deciding criteria ? Is being verbal a high-functioning child? But he may have sensory challenges and may not like to stay in school. Is it low-functioning if the child cannot use spoken language, but may be successful if we nurture him as per his interests and skills? It is now time to ponder that neither of the functioning levels describes the level of ability or function across multiple tasks. There is no optimal criteria to measure autism as a unitary construct.
The children, and adults too, with autism have long faced many inequalities, further exacerbated by the pandemic. This includes discriminatory employment practices, giving rise to under or unemployment of this population. The theme of ‘Inclusion in the workplace’ thus resonates more. The present trend of management is focused on, that people with autism must change, in order to accommodate to the so called, non-autistic world. This is indeed very stressful and often we need to deal with anxiety, sleep problems, plateauing in their development and becomes withdrawn, which often is recognised as an abnormal behaviour. Research has shown that older persons with autism have expressed that they want subjective wellbeing and adaptive skill assistance rather than neurotypical functioning. If we have a right based approach in keeping with the United Nations convention, it is time to listen.
The Sustainable Development Goals give us a format, among others, to productive employment for all, including those with disabilities. Article 27 of the UN Convention on the Rights of Persons with Disabilities also recognizes the right of persons with disabilities to work, on an equal basis with others, in an open inclusive environment. The pandemic has thrown up new ways of working, especially with remote-based technologies, giving boost to an inclusive hiring practice, away from a traditional workplace milieu. The latter is less stressful for them, and also to teaching and stimulating in a naturalistic environment, as evidenced during the pandemic where teaching was home-based and naturalistic. This again is a sustainable methodology.
Autistic persons have a different ‘brain wiring’ within the normal variation in humans, giving rise to the concept of being ‘neurodiverse’. Neurodiversity proponents believe that autism is caused by biological factors, celebrate it as a part of natural human variety (Armstrong 2010). They regard atypical neurological development as a normal human difference and this gives us three ways of responding ; do we work to prevent this happening ,or work to ameliorate or to celebrate? The question that arises is why we cannot negotiate a place for them amidst the neurotypical? A strength-based focus counteracts the deficit view, as a large group of children have unique positive traits and they are very passionate about their interests and spend a lot of time, energy and imagination, this certainly calls for channelization.
Further, one advantage we have is they are not tied to social expectations, they are methodical in their work, and often seen to be technologically oriented. They have an innate skill in pattern recognition, logical reasoning and picking out irregularities in data. Seeing these qualities some IT companies are now employing them, thus highlighting the importance of harnessing autistic traits in developmentally beneficial ways.
We have sketchy data on the exact extent of autism in India, but none on their employment. Many NGOs, especially EnAble India, has training programs for autistic individuals geared for employment, and though we have many Indian IT companies, it is SAP Labs India that has had an encouraging recruitment of autistic individuals. Globally, a very successful move has been the Danish model of recruitment of high-functioning adults to the IT based Specialisterne Foundation, that has a collaboration with the UN Department of Global Communications and UN Department of Economic and Social Affairs.
Learning about neurodiversity may serve as a turning point towards a more holistic concept of autism, and may represent convergence of social and medical models. Positive framing often helps parents and child interaction to improve.
The 2021 World Autism Awareness Day observance give us all an opportunity to look at the talent pool of autistic persons that we have denied to be part of the labour market.
About the author: Dr Shabina Ahmed is MD., FIAP and is the founder and director, Assam Autism Foundation, Guwahati