Autism: The role of the family
The theme of World Autism Awareness Day - which is observed on April 2 every year and aims to increase awareness about people, especially children, with autism - for 2016, is "Autism and the 2030 Agenda: Inclusion and Neurodiversity.
Autism affects approximately 1 out of every 150 children around the world. It refers to a neuro-developmental disability defined by a number of behavioural features that ranges in severity levels, from mild to moderate. Children with autism typically have a markedly abnormal or impaired development in social interaction and communication and a markedly restricted repertoire of activity and interests.
The Centre for Disease Control (CDC) released report on the prevalence of autism in the United States. This study identified 1 in 68 children (1 in 42 boys and 1 in 189 girls) as having autism spectrum disorder. In addition, the CDC offers data from numerous studies in Asia, Europe and North America, showing an average prevalence of Autism Spectrum Disorder (ASD) of about 1 percent (CDC, 2012). A culture has developed around autism, with some individuals seeking a cure and others believing autism should be accepted as a difference and not treated as a disorder. No definitive answer or specific cause has yet been scientifically linked to the onset of autism. However, there could be different factors that make a child more likely to have autism, including genetic, environmental and biological factors. For pregnancies conceived with Assisted Reproductive Technology (ART), for example, the increased risk for autism is in large part due to the higher likelihood of adverse pregnancy and delivery outcomes. On the other hand, using ART may lead to factors that are known to put children at risk for autism, such as being born too early or being born too small.
Awareness about autism in Bangladesh is the demand of the day. Many people living in rural Bangladesh carry false conceptions about autism, and hence a stigma is attached to this mental condition, thereby acting as a barrier in promoting the scientific management of ASD. In the last four years, the Government of Bangladesh has made tremendous progress in reducing the stigma related to autism, and has taken necessary measures to address concerns related to ASD.
As a part of an awareness campaign, the Centre for Neurodevelopment and Autism in Children (CNAC) was established in 2010 as a nationwide paediatric neurodevelopment and autism related management, training and research centre in Bangladesh. In 2011, Bangladesh hosted the international conference titled "Autism Spectrum Disorders and Developmental Disabilities in Bangladesh and South Asia". In this conference, the Dhaka Declaration on ASD was ratified by seven regional countries, which highlighted the need for awareness, treatment, research and legislative framework for children with ASD. Resolution 67/82, which builds on the principles of the Convention on the Rights of the Child (CRC) and the Convention on the Rights of Persons with Disabilities (CRPD), was unanimously adopted by the UN in 2012. The major goal of this resolution is to enhance support for individuals, families and communities affected by ASD, all over the world. In 2013, the Bangladeshi government passed two laws. The Neuro-developmental Disabled Persons Protection and Trust Act allows for a trust fund to be set up for the benefit of people with neuro-developmental disabilities, including ASD. This Act also seeks to ensure the rights and safety of people with neuro-developmental disabilities by providing them physical, psychological and financial assistance. Secondly, the Disabled Persons Right and Security Act was formulated to ensure the rights and security of children with ASD.
Many children with autism also have different ways of learning, paying attention, or reacting to things. As a whole, there is no single impairment, behaviour or ability that can be attributed to autism. Autism is a lifelong disability that presents multiple challenges for families at each stage of the life course. It is acknowledged that parents play a vital role as a primary actor in the education of their children, so the aim is to support kids with autism in exercising their skills and competences, and to bring together all the actors who work with families. Moreover, the daily functioning of a family, and the way each member of the family perceives the situation is important for interactions between children with disability and their parents. In addition, parents of children with autism play multiple roles in their kids' life. They are often the first people to recognise a developmental problem. Parents are typically active partners in their child's education to ensure that skills learned in the educational programme transfer to the home setting; they are also responsible for teaching their children the norms and mores of society that are best mastered at home and within the community.
Parents often have to confront a sea of emotions - ranging from sadness, anger, disappointment – when they first discover that their child has a significant developmental problem. Most families cope effectively with these demands, but some may encounter substantial stress when raising a child with autism. It is important to keep in mind that throughout childhood, parents must be recognised and valued as the key elements of any intervention. Information, training and support, always within the context of family values and culture, should be the common denominator of any professional intervention. Other important sources of support - such as babysitting services, respite care, short breaks or tax benefits - should be available to avoid the discrimination that many of these families face. Adequate support for social, medical and educational services is necessary to ensure that these families are able to enjoy the same quality of life as everyone else. We need to understand that autism is not the same as portrayed in media or popular culture. Families with an autistic child often find it challenging to deal with this condition. There are, however, some effective strategies and approaches to support the teaching and learning process for children with autism. A decision to use a particular approach should be based on an in-depth knowledge of the child, what one wishes to teach and what the child needs to learn. A child's autism diagnosis affects every member of the family in different ways. Parents/caregivers must now primarily focus on helping their child with autism. The needs of a child with autism can sometimes complicate familial relationships, especially in a family with more than one child. However, parents can help their family by informing the rest of their children about autism and the complications attached to this condition; they could help their kids understand the challenges their sibling faces. Moreover, they could involve members of the extended family to create a network of help and understanding.
Children diagnosed with autism often follow specific routines in their everyday life. Parents can rearrange their daily routines to accommodate to the child's timetable, as children with ASD can be unpredictable, and are often unable to regulate their behaviour. Although raising a child diagnosed with autism can be extremely stressful and life changing, it's not necessary for families to have a negative experience when dealing with this condition. Parents can find resilience in their child's autism diagnosis, and can even recognise positive ways in which autism has impacted their lives.
The writer is Assistant Professor, Department of Psychology, University of Dhaka.