Shedding light on ASD
“To measure the success of our societies, we should examine how well those with different abilities, including persons with autism, are integrated as full and valued members.— Ban Ki-Moon.
Autism is a lifelong neurological condition that manifests during early childhood, irrespective of gender, race, or socio-economic status. The term autism spectrum refers to a range of characteristics. Appropriate support, accommodation, and acceptance of this neurological variation allow those on the spectrum to enjoy equal opportunity and full and effective participation in society.
People with autism are mainly characterised by unique social interactions, non-standard ways of learning, keen interests in specific subjects, inclination to routines, challenges in typical communication, and particular ways of processing sensory information.
During a conversation earlier this year a parent shared that his autistic teenage son is non-verbal and spoke of some of the challenges. Undoubtedly, it takes patience, cash, and time to cater to and monitor the needs of one who is autistic.
Autism has become more common than at any other time in our history. Almost all families have at least one member who is autistic. The Centers for Disease Control and Prevention (CDC) says 1 per cent of the world’s population has autism spectrum disorder (ASD), that is over 75,000,000 people. Alarmingly, in 2022, 1 in every 100 children were diagnosed with ASD. Everyone, including people with autism, has the right to enjoy the highest attainable standard of physical and mental health. However, very often autistic people are subjected to stigma and discrimination, including unjust deprivation of education and opportunities to engage and participate in their communities.
A few months ago a family was interviewed on local television about what life is like caring for an autistic child. The mother, in this instance, had to give up her job to be home full-time with her son. This is perhaps one of the more privileged families as, in most cases, a single mother could not afford to give up her economic means of support to care for an autistic child. During the interview, the parents shared that a significant number of their friends and associates with autistic children had migrated in recent years to the United States of America and Canada, where more State support and resources exist for autistic children.
Autism appears to be a growing problem; however, much stigma and discrimination remains surrounding this developmental disorder. Unfortunately, even in the education system a significant number of the teachers are clueless regarding how to effectively address the needs of autistic children. It is not uncommon for autistic children to move from school to school as their parents and guardians try their best by ensuring that their children have access to a holistic education.
In Jamaica, there are not enough special needs schools to accommodate these students. In instances in which special needs students can be accommodated, these tend to be independent institutions and the school fees are often prohibitive for the average Jamaican.
The UN states that the rate of autism in all regions of the world is high and lack of understanding has a tremendous impact on the individuals, their families, and communities. The stigma and discrimination associated with neurological differences remain substantial obstacles to diagnosis and therapies, an issue that must be addressed by both public policymakers in both developing and developed nations.
Throughout its history, the UN family has celebrated diversity and promoted the rights and well-being of people with disabilities, including learning differences and developmental disabilities. In 2008 the Convention on the Rights of Persons with Disabilities entered into force, reaffirming the fundamental principle of universal human rights for all. Its purpose is to promote, protect, and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all people with disabilities and to promote respect for their inherent dignity. It is a vital tool to foster an inclusive and caring society for all and to ensure that all children and adults with autism can lead full and meaningful lives.
The UN General Assembly unanimously declared April 2 as World Autism Awareness Day (WAAD) to highlight the need to help improve the quality of life of those with autism so they can lead full and meaningful lives as integral members of society.
The Centers for Disease Control and Prevention (CDC) states that ASD is a developmental disability caused by differences in the brain. People with ASD often have problems with social communication and interaction and restricted or repetitive behaviour or interests. People with ASD may also have different ways of learning, moving, or paying attention. It is important to note that some people without ASD might also have some of these symptoms. But for people with ASD, these characteristics can make life very challenging.
People with ASD may behave, communicate, interact, and learn in ways that are different from most other people. There is often nothing about how they look that sets them apart. The abilities of people with ASD can vary significantly. For example, some people with ASD may have advanced conversation skills, whereas others may be non-verbal. Some people with ASD need a lot of help in their daily lives, others can work and live with little to no support.
ASD begins before the age of three years and can last throughout a person’s life, although symptoms may improve over time. Some children show ASD symptoms within the first 12 months of life. In others, symptoms may not show up until 24 months of age or later. Some children with ASD gain new skills and meet developmental milestones until around 18 to 24 months of age and then they stop gaining new skills or lose the skills they once had.
As they become adolescents and young adults, they may have difficulty developing and maintaining friendships, communicating with peers and adults, or understanding what behaviour is expected in school or on the job. They may come to the attention of health-care providers because they also have conditions such as anxiety, depression, or attention-deficit/hyperactivity disorder, which occur more often in people with ASD than in those without.
Diagnosing ASD can be difficult since there is no medical test, like a blood test, to identify the disorder. Doctors must examine the child’s behaviour and development to make a diagnosis. ASD can sometimes be detected at 18 months of age or younger. By age two a diagnosis by an experienced professional can be considered reliable.
The global focus this year for WAAD will centre on the contribution of autistic people at home, at work, in the arts, and in policymaking.
The pupose of the day is to put a spotlight on the hurdles that people with autism and others living with autism face every day. As a growing global health issue, owing to its increasing exposure in the press and common knowledge, autism is an issue that is only gaining more understanding and WAAD activities are planned every year to further increase and develop world knowledge of children and adults who have ASD.
On WAAD the international community celebrates the contributions of people with autism and renews its resolve to advance their inherent rights. Despite important progress, people 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.
Clearly much more can be done at the various levels, including State, private sector, and non-governmental organisations (NGOs) to promote inclusive education and equal employment opportunities to foster an environment in which every person is respected and valued. A diagnosis of autism is not the end of life, it is a chance to reset one’s life.
In the words of author Kathleen Seidel, “Autism is as much a part of humanity as is the capacity to dream.”
Wayne Campbell is an educator and social commentator with an interest in development policies as they affect culture and/or gender issues. Send comments to the Jamaica Observer or waykam@yahoo.com.