Towards A Neuro-Inclusive World For All

“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 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 percent of the world’s population has Autism Spectrum Disorder; over 75,000,000 people. In 2022, 1 in every 100 children was diagnosed with Autism Spectrum Disorder. On a recent visit to the supermarket I saw a mother and her son in a verbal encounter. This exchange between mother and child drew a small crowd. The child was probably about 5 years old and was throwing a fit of temper. Other shoppers whispered that the boy was autistic and that the mother should not reprimand him in that manner. The boy was screaming and yelling on top of his lungs for a food item which was in his mother’s hand to be cashed. However, he was adamant not so much in words that he wanted the item now. After much to and fro between mother and child the mother gave in and handed her son the item while she waited in the queue. The mother was clearly frustrated. It must be challenging to deal with an autistic child especially in a society with little support systems to cater to this vulnerable group. A few months ago a family was interviewed on local television about what life was like caring for an autistic child. The mother in this instance had to give up her paid job to be home full time with her son. This is perhaps one of the more privileged families meaning 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 exists 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 where special needs are available they tend to be independent institutions and the school fees are often prohibitive for the average Jamaican. The United Nations (UN) states that the rate of autism in all regions of the world is high and the lack of understanding has a tremendous impact on the individuals, their families and communities. The stigmatization and discrimination associated with neurological differences remain substantial obstacles to diagnosis and therapies, an issue that must be addressed by both public policy-makers in both developing and developed nations. Background Throughout its history, the United Nations family has celebrated diversity and promoted the rights and well-being of persons 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 persons 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 United Nations General Assembly unanimously declared 2 April as World Autism Awareness Day in order to highlight the need to help improve the quality of life of those with autism so they can lead full and meaningful lives as an integral part of society. 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. Autism is mainly characterized by its unique social interactions, non-standard ways of learning, keen interests in specific subjects, inclination to routines, challenges in typical communications 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 for and attend to the needs of one who is autistic. What is Autism? The Centers for Disease Control and Prevention (CDC) states Autism spectrum disorder (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 behaviors 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 from other people. The abilities of people with ASD can vary significantly. For example, some people with ASD may have advanced conversation skills whereas others may be nonverbal. 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 3 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 children with ASD become adolescents and young adults, they may have difficulties developing and maintaining friendships, communicating with peers and adults, or understanding what behaviors are expected in school or on the job. They may come to the attention of healthcare 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 people without ASD. Signs and Symptoms People with ASD often have problems with social communication and interaction, and restricted or repetitive behaviors or interests. People with ASD may also have different ways of learning, moving, or paying attention. These characteristics can make life very challenging. It is important to note that some people without ASD might also have some of these symptoms. Diagnosis Diagnosing ASD can be difficult since there is no medical test, like a blood test, to diagnose the disorder. Doctors will examine the child’s behavior and development to make a diagnosis. ASD can sometimes be detected at 18 months of age or younger. By age 2, a diagnosis by an experienced professional can be considered reliable. In Pursuit of Neuro-Inclusive World The global focus this year for World Autism Awareness Day will center on the contribution of autistic people at home, at work, in the arts and in policymaking. World Autism Awareness Day (WAAD) aims 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 autism spectrum disorder (ASD). On World Autism Awareness Day, the international community celebrates the contributions of persons with autism and renew their 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. Clearly much more can be done at the various levels including State, private sector and non-governmental organization (NGO’s) in order to promote inclusive education, and equal employment opportunities to foster an environment where 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 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. waykam@yahoo.com @WayneCamo © #WorldAutismAwarenessDay #WAAD