Autonomy and self-determination

April 2nd is World Autism Awareness Day. Mst. Maleka Pervin reveals the various strategies that may work against the disorder that is becoming more rampant across the globe with every passing year

autism

Tocelebrate the World Autism Awareness Day on April 2, there will undoubtedly be unique fundraising and awareness generation campaigns. These can provide us with focus through which a voice can be raisedfor the millions of individuals worldwide who are undiagnosed, misunderstood and looking for help.

 

The term ‘Autism Spectrum Disorder (ASD)’ describes a range of conditions classified as neuro-developmental disorders in the fifth version of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, published in 2013 characterised by impairments in social interaction, problems with verbal and non-verbal communication and restricted, repetitive behavior, interests and activities. These signs all begin before a child is three years old.

 

However, not many children with autism live independently after reaching adulthood, though some become successful. An autistic culture has developed, with some individuals seeking a cure and others believing autism should be accepted as a difference and not treated as a disorder. It is estimated that approximately 1 per cent of the global population is autistic.

 

On December 18, 2007, the United Nations General Assembly adopted resolution 62/139 thus declaring World Autism Awareness Day on April 2 of every yearin a bid to encourage all member states to take measures and raise awareness about autism in their societies as well as to emphasise on early diagnosis and early intervention. While concerned at the prevalence and high rate of autism among children worldwide and the consequent developmental challenges, World Autism Awareness Day shines a bright light on the unique talents and skills of persons with autism who are warmly welcomed and embraced in community events across the world.

 

The theme for World Autism Awareness Day 2017 is ‘Toward Autonomy and Self-determination’. The motive is tofocus on policies and approaches being implemented with regard to guardianship and the path to self-determination and legal capacities of persons with autism on the basis of The Convention on the Rights of Persons with Disabilities (CRPD) in Article 3 and Article 12. First of all, Article 3of CRPD recognises the right of persons with disabilities to independence of person and to individual autonomy. Accordingly, Article 12 highlights the right of persons with disabilities to ‘legal capacity on an equal basis with others and in all aspects of life’where legal capacity is instrumental to the recognition of a person as a human being of full personhood, with the right to take decisions and enter into contract.

 

The realisation of rights for children with disabilities in Bangladesh is quite uneven due to prevalent stigma. In spite of, the good news is that positive change is remarkable, along with numerous opportunities to improve the situation. The children with disabilities including Autism in Bangladesh are increasingly speaking up for their rights and finding support from advocates, ranging from the highest levels of Government, to a group of committed professionals and dedicated parents, to a strong and vibrant mass of civil society actors. Consequently, at present the government of Bangladesh is pledge-bound to include the people suffering from autism and other physical disorders into the mainstream of development. As a result, an education policy integrating disability affairs and policy for disability supports and services centrewas passed in 2011 for ensuring the rights and welfare of the children with autism. Also, the Neuro Developmental Disabilities Act and Disabled Persons Right and Security Act was adopted in 2013 respectively. For a new direction to the awareness, research and services for children with autism, SaimaWazed Hossain, daughter of the prime minister of Bangladesh,played the role as a chairperson of the National Advisory Committee on Autism of Bangladesh. She organisedtheInternational Conference in Bangladesh on Autism Spectrum Disorders and developmental Disabilities in Bangladesh and South Asia held in 2011for increasing and sharing knowledgeabout Autism.

 

Children with Autism Spectrum Disorder often have difficulty building and maintaining social relationship due to lack of proper services from the family and the schools as well. Therefore, there is a need to understand best practices for supporting the development of autonomy and overall self-determination for children with autism. People experience autonomy when they perceive themselves as the initiator of their own actions and when they are self-governing. In this situation, parents and teachers have the ability to facilitate or hinder the development of self-determination through autonomous support. On the grounds, they can encourage their children to solve their problems and create a supportive environment to take the right decision through rational consequences that has been positively associated with self-determination leading to better school grades and academic competence.

 

The important characteristics of children with ASD affect their socialisation, verbal and nonverbal communication that may lead to specific areas of instructional and support need as it pertains to promoting self-determination. Applied behaviour analysis techniques, highly contingent environments and exclusively teacher-directed activities are the best techniques for increasing skills like self-regulation, decision making and other actions that lead to enhanced self-determination.

 

With the emergence of the self-advocacy movement for people with ASD, led by people with autism and Asperger syndrome and their families, and the availability of advanced interactive communication technology, greater self-awareness and more positive social and cultural values have emerged within the autism community. These values have shifted education and supports beyond the medical and social control model of human functioning towards a broader ecological perspective, resulting in the emphasis on meaningful social involvement and opportunities to learn and exercise self-determination. As such, promoting self-determination has become an increasingly important element in the education of students with ASD, although more knowledge is needed to better understand the factors that improve the selfdetermination of all people with disabilities includingchildren with ASD.

 

Finally, a concrete understanding of the role that autonomy plays in the academic and social domains of life for individuals with ASD will help determine how parents and teachers can better provide autonomy support and promote self-determination in the group of individuals with autism.

 

The author is an assistant professor at the department of Psychology from University of Dhaka