Autism and inclusivity
Autism continues to be shrouded in mystery, and some argue that environmental factors and genetics are the root causes.
Almost every family has at least one member who is autistic. According to the Centers for Disease Control and Prevention (CDC), about one per cent of the world’s population has autism spectrum disorder (ASD) or over 75,000,000 people.
In Jamaica, where we have almost 40,000 births per year, approximately 600 of those will be diagnosed with ASD.
One of the best known advocacy groups for autism is Autism Speaks, which encourages everyone to join the autism awareness campaign.
We know that the diagnosis of autism is becoming more frequent in the world, and it is not uncommon for siblings to be autistic. It appears that once a mother has one autistic child the likelihood of having another increases.
The CDC statistics have revealed that ASD is 4.3 times more prevalent in boys than it is in girls. And, according to the Child Mind Institute, girls often go undiagnosed because they do not fit autism stereotypes and they mask features better than boys.
Thankfully, we are now at a juncture where more information concerning this developmental disorder is available.
The Word Health Organization (WHO) states that ASD are a diverse group of conditions. They are characterised by some degree of difficulty with social interaction and communication. Other characteristics are atypical patterns of activities and behaviour, such as difficulty with transition from one activity to another, a focus on details, and unusual reactions to sensations. The abilities and needs of autistic people vary and can evolve over time.
People with ASD have behaviour or interests that can seem unusual. These set ASD apart from conditions defined by problems with social communication and interaction only. Examples of restricted or repetitive behaviour and interests related to ASD can include lining up toys or other objects and getting upset when order is changed; repeating words or phrases over and over; delayed language and movement skills; delayed cognitive and learning skills; avoiding or not maintaining eye contact; not responding to name by nine months of age; not displaying facial expressions, like happiness and sadness, by nine months of age; and using no or few gestures by 12 months of age.
People with ASD tend to have a heightened sensory skills, such as that of smell, and they oftentimes have visual impairment and require glasses.
Students who are impacted by ASD prefer a set pattern, and tend to dislike changes to their environment. They often require behaviour therapy, speech therapy, occupational therapy, and early intervention or special educational services. Additionally, some children may require medication or a shadow teacher, who will provide one-on-one support to help in the development of their academic, social, and behavioural skills. He or she will play an important role in the development of much-needed confidence in autistic children.
A significant number of public schools do not cater to autistic students. As a result, some parents opt to homeschool out of fear that their child/children will be teased for being different. It should be noted that the Ministry of Education (MOE) facilities homeschooling in Jamaica, so parents of autistic children may want to take advantage of this option.
While some people with autism can live independently, others have severe disabilities and require lifelong care and support. Autism often has an impact on education and employment opportunities. In addition, the demands on families providing care and support can be significant. Societal attitudes and the level of support provided by local and national authorities are important factors in determining the quality of life of people with autism.
In the US, on average, autism costs an estimated US$60,000 per year through childhood, with the majority of the costs in lost wages related to increased demands on one or both parents. And costs increase with the occurrence of intellectual disability. Additionally, mothers of children with ASD are less likely to work outside the home.
It would be interesting to find out the cost to care for an autistic person from childhood to adulthood in Jamaica. Perhaps parents who have children who are autistic should obtain some tax relief, given how costly it can be to adequately care for these children.
More lobbying is required to urge the Government to build more public schools to cater to the abilities of autistic students. But, regrettably, many teachers are not equipped to handle students who are autistic. Going forward, the MOE should require that all teachers be exposed to special education training to better prepare them to assist students who are on the autism spectrum.
There is an urgent need for more research as well as more funding to be channeled into this specialised developmental disorder.
In Jamaica, the Jamaica Autism Support Association (JASA) provides parents with some level of support. Among the goals of the JASA are to raise awareness about autism in Jamaica as well as to advocate for an education system that is inclusive. Currently, parents are finding it extremely difficult to identify educational institutions which cater to the needs of children of all abilities.
Children who display signs of autism have the right to an education and opportunities just like anyone else.
Parents or guardians who suspect that their child is autistic should speak to their child’s paediatrician and get some advice.
If you have an autistic child or family member spend some time and do the research to better prepare yourself to assist them in realising their full potential. There is no need to be ashamed of autistic children.
In the words of United Nations Secretary General António Guterres, many people with autism still live in isolation, discriminated against and disconnected from their communities and even their own homes. We must reaffirm our commitment to an inclusive, equitable, and sustainable world for people with autism.
Wayne Campbell is an educator and social commentator with an interest in developmental policies and their impact on culture and/or gender issues. Send comments to the Jamaica Observer or waykam@yahoo.com