Are We Failing Autistic People?

Dear Editor,

April is globally known as Autism Acceptance Month, and I have something to say. I am tired of seeing walkathons and t-shirts and whatever other superficial attempts there may be to observe and educate the public on autism spectrum disorder (ASD). Awareness is important, but in the year 2023, I am looking forward to more action and tangible resources for our neurodiverse population. I am the mother of a sweet little boy who happens to be on the autism spectrum. Unfortunately, he is living in a society that has made very little accommodations for him and it breaks my heart.

Since the age of 3, I knew my son was different. He went to nursery school and graduated. The teachers had their complaints, and back then, as a new mother, I did not know what I was dealing with. Regardless of my confusion, I began doing my own research and came to the conclusion that my son was autistic. The pandemic came and I enrolled my son in a certain private school. Instruction was virtual and during those months of working from home and giving him one-on-one attention, he did fairly well, but with a few difficulties.

Online interaction was a challenge as he could not respond to his teacher or participate in class discussions. His attention span was short, and he often had tantrums throughout the day. We painstakingly got through that first year and then it was time to return to physical classes. I decided to transfer him to a special unit within that same school. I knew he wouldn’t be able to learn or function properly in a mainstream class without special support and intervention, which is what I was promised when I enrolled him in the special unit. Without going into details, let’s just say that my expectations were not met.

This letter is not about bashing schools, it is about highlighting the lack of support and resources that exist for autistic children in Guyana. I sought help from the Ministry of Education’s Regional Diagnostic Centre in Turkeyen almost a year ago and I am still waiting for that process to be concluded. My son is going into another term at school with no Individualised Education Program (IEP) that is meant to serve as a guideline for his school concerning methods that should be used to teach him, and the support he requires in the classroom. He is very capable but he is struggling because there are not sufficient accommodations in our education system for children like him. Parents are left to find solutions on their own with no clear pathway for their children.

I respect our healthcare professionals, but there is a serious need for autism specialists in Guyana. We have too many generalists who seem to have only a basic understanding of autism spectrum disorder at best. Autism is unlike any other kind of developmental disorder in the sense that these children exist on a spectrum – no two are alike and one can be drastically different from the other. This means that persons conducting the diagnosis process should be highly skilled in observing and interacting with these children so that their reports and recommendations are appropriate and exhaustive.

The diagnosis report that I received from the centre was insufficient in the sense that my son was engaged on one or two occasions, without me present (I understand the premise), and he was noted as unresponsive for the most part. He was nervous and in a strange place, meeting strange people for the first time. He was immediately asked questions and given assessments. Of course, his response wasn’t representative of his true cognitive abilities and his challenges were also not adequately outlined. It is frustrating. I understand that autism specialists are scarce on a global scale, but perhaps we can encourage more of our doctors to become specialists in this area. Guyana has more autistic children than people realise but they often fly under the radar because Guyanese are extremely ignorant to disabilities they cannot see.

Aside from that, I really hope that the Ministry of Education is working feverishly towards inclusivity and accommodation for neurodiverse children in the public school system. I am a single parent with a job that barely allows me to pay for a private school education. I’ve been asked why not send him to public school if I can’t afford it. Where will he go? Who will support him? Will he be afforded special care and attention and extra accommodations? And what about the people who have autistic children but can’t afford to send them to private institutions? How are these children coping in public schools? What about autistic children who are non-verbal, or autistic children who are easily overstimulated and thus prone to meltdowns? Are we training teachers to recognise these traits in students so that they don’t label our children crazy or problematic?

We need more than a yearly walk and a few workshops here and there. We need urgent action lest we fail these brilliant children. My son can write, read and spell very well. He is a wonderful child, but he is also socially delayed, suffers from a speech delay, has ADHD and also sensory processing issues. So while he may be a capable child, he cannot function without the right support inside and outside of the classroom. We need more trained special education teachers and aides in our classrooms because dealing with children who have developmental disorders requires patience, understanding and an informed approach.

We need extracurricular activity instructors who are trained to deal with children who have developmental disorders because our children deserve to learn new things and be involved. They deserve to socialise and develop special interests and have fun. We need child-friendly spaces in our communities and within the city that cater to children of all backgrounds. At present, shopping malls, hotels, lounges, bars and restaurants vastly outnumber child oriented spaces where children can go to learn, play, socialise and be entertained – not just eat. We need inclusive classrooms in public schools, as well as classrooms that cater to children who require more substantial support. We need more speech therapists, occupational and behavioural therapists, child psychiatrists and psychologists, and developmental paediatricians. We need more support for parents seeking help.

It is my wish that for Autism Acceptance Month, we sit and think about how we can successfully integrate and accommodate autistic persons into society so that they can contribute in their own ways. They deserve to live full lives and that starts with education and community inclusion. Let us look at what other developed countries are doing and see how we can begin working towards that, on a smaller scale. Our children will be left behind if we don’t act fast.

Yours truly,

K. Penn