More attention needed for the Neurodivergent Community

“It takes a village to raise a child. It takes a child with autism to raise the consciousness of the village.”- Coach Elaine Hall.

There remain a lot of unknown elements to autism.  As a result, autism continues to be surrounded in a culture of myths, superstition and misconceptions. Regrettably, since the start of this year we have had the deaths of a number of autistic children, one boy was found in a pit in the back of his yard and another discovered in a locked car.  Unfortunately, there is also much stigma and discrimination regarding those who are in the autistic community. Many parents of autistic children are frustrated.  Among the reasons for such frustration are access and affordability to get autistic children enrolled in schools. Evidently, there are not adequate spaces within the public education system to accommodate autistic children. The cost associated for private tuition for autistic children can be prohibitive.  Additionally, the situation in the rural areas is worse for those children with neurodivergent issues.  

Those families who are better off economically are better able to afford the therapy and private tuition for their children. This culture of division speaks to an ethnology of exclusivity and therefore runs counter to the United Nations Sustainable Development Goal #4 inclusive, equitable and quality education for all, while supporting efforts to improve learning outcomes and address regional disparities. Goal 4 remains a critical enabler for sustainable development. 

Recently, I met an autistic boy at a medical facility. It was clear that this boy was different based on his behaviour.  He had difficulty remaining still which required his guardian to run after him repeatedly. At one point his guardian turned to me and said. “He is  autistic.”  This youngster is also non-verbal. During my wait I asked the guardian whether the youngster was attending school and she said no. She added that at his last school the teachers were unable to manage him. 

I told his guardian that he should be attending school. I also gave her the address of the Special Education Unit of the Ministry of Education in order to get some assistance for him. The youngster in question is 8 years old. 

Autism typically starts during childhood and continues into adulthood.  Autism Spectrum Disorder is a developmental disorder characterized by behavioural and communicational affections that impact a person’s ability to navigate social interactions and also causes repetitive and restricted behaviour. Autism Spectrum Disorder (ASD) is a developmental disability that affects speech, social skills, learning and behaviour. The term ‘developmental disability’ means that it results from a problem occurring when the brain was developing in the early years. Typically, persons with developmental disabilities show features in the first six years of life, but these features often continue into adulthood.  The term ‘spectrum’ means that some persons will have very severe features and some persons will have very mild features. The Centers of Disease Control (CDC) statistics revealed that autism spectrum disorder (ASD) is 4.3 times more prevalent in boys than it is in girls? This is because girls “often go undiagnosed because they don’t fit autism stereotypes and they mask symptoms better than boys do,” according to the Child Mind Institute.  In Jamaica, where we have almost 40,000 births per year, this means that approximately 600 children per year will be diagnosed with ASD.  The time for a national conversation concerning Autism Spectrum Disorder is now. Too many of our children are being left behind. As a society, we can do better, we ought to do better for these autistic students who are often overlooked and marginalized.  Autism has touched every family in one way or the other. As a society we need to have special education units at all primary schools. Undoubtedly, more investment and training are urgently required in getting more teachers certified in special education to give support to these students.

Research has indicated that the earlier the intervention for any autistic children the better the outcome.  

Developmental Approaches

Students who are autistic should have access to state-subsidized resources.  Developmental approaches focus on improving specific developmental skills, such as language skills or physical skills, or a broader range of interconnected developmental abilities. Developmental approaches are often combined with behavioral approaches.

The most common developmental therapy for people with ASD is Speech and Language Therapy. Speech and language therapy helps to improve the person’s understanding and use of speech and language. Some people with ASD communicate verbally. Others may communicate through the use of signs, gestures, pictures, or an electronic communication device.

Occupational therapy teaches skills that help the person live as independently as possible. Skills may include dressing, eating, bathing, and relating to people. Occupational therapy can also include Physical therapy to improve physical skills, such as fine movements of the fingers or larger movements of the trunk and body.

All such students should be on the Programme of Advancement Through Health and Education (PATH) programme. 

A Culture of Engagement

There needs to be a sociological shift in the society where those who are labeled as different are mainstreamed and accepted into the wider society.  There needs to be a cadre of officers who are tasked to provide targeted support and assistance to families with children who struggle with developmental issues.  As a nation the time has come for us to redouble our efforts to meaningfully engage and integrate all our students. Children who are autistic have so much talent that needs to be exposed and appreciated. 

We cannot speak about fostering a culture of sustainable development without addressing the needs of those who are underserved and underrepresented. 

In the words of Ban Ki moon, 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.

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

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