Time for autism inclusion is now

DR RADICA MAHASE

Yesterday was Autism Awareness Day and April is Autism Awareness Month.

What does this mean? It means that social media will be flooded with autism flyers, some autism "success stories" will be highlighted in various ways and the word autism will be mentioned more.

This might not sound like much. Indeed, Autism Day/Month celebrations in TT doesn’t even start to address the real issues and lead to any significant changes for people on the spectrum in our country.

Yet for me personally, it is heart-warming to see more individuals and businesses even mentioning autism. The naysayers will argue that many of them just jump on the bandwagon, as Trinbagonians have a tendency to do. I still feel that small joy seeing all the flyers, etc, because about 15 years ago, when I started this autism journey with my nephew, Rahul, autism was not a word that many people had even heard about.

So yes, in the past ten-15 years we have come a long way in recognising autism and little by little, people are starting to pay attention.

The thing is, autism awareness, one day or even one month every year, is simply not enough. Awareness is important, especially if it can help to educate people; get rid of the misconceptions about people with autism and bring about some kind of positive changes in society. However, a much deeper level of change is needed in our country.

As one parent said, “People being aware of autism and knowing what is autism is good, but I need more for my child. I need to find a school with teachers who will understand and work with my child. I need to be able to access all the different therapies in a health centre or a hospital.

"I need to know that there are laws and policies that are working, that will make sure that my child is treated in the same way as every other child in TT, not like a second-class citizen.”

In his address on Would Autism Day 2023, UN secretary-general António Guterres said, “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. We must do better – by promoting inclusive education, equal employment opportunities, self-determination, and an environment where every person is respected.”

As I have written many times before, it is not that we do not have laws in place in TT; the problem is that laws are not effectively implemented.

On paper, TT looks like a country where persons with autism and all types of disabilities, have equal access to opportunities. We look like a country that is keeping in line with the Convention on the Rights of Persons with Disabilities and the 2030 Agenda for Sustainable Development.

In reality, we are nowhere near to catering to the needs of both children and adults on the autism spectrum. Guterres says we need to do better, in education, employment and by creating an inclusive society.

These are the three areas that are most lacking in TT. Making positive changes in these areas is a mammoth task, but not an inconceivable one. For us to get to that point, though, we need to tackle the various issues at different levels. Change must happen at a national level, within the walls of Parliament and government institutions. New laws, policies and actions plans are desperately needed, especially addressing areas like skills training, employment and housing for adults on the autism spectrum.

Existing laws and policies need to be effectively implemented. What good is an inclusive education policy when it is tucked away collecting dust?

It is simply wrong to say that every child has a right to an education when schools are blatantly not accepting children diagnosed with autism or when the entire education system is not structured with special-needs children in mind.

The Ministry of Education has one of the biggest roles to play and needs to wake up and do its part – access to a good-quality education, adapted to the individual child’s special needs must begin from early childhood education. When teachers at the ECCE centres are trained in special-needs education, they will be able to recognise the early signs of autism and other developmental disabilities, where parents don’t know or have missed these signs. Early intervention is a major key in the development of a child.

The Ministry of Health continues to make no serious efforts to address the extremely long waiting periods for diagnosis and the lack of therapy services within the public health care system.

While it is important that a parent is aware of the signs of autism and can recognise some of these in their toddlers, what happens next? There must be structures in place within the public health care system to address their concerns, to diagnose their children and to offer counselling and therapy services.

As a country, TT needs to be more committed to inclusion. Government must be willing to work with advocates and other stakeholders to create real change.

Year after year it cannot be the same modus operandi. It should not be the case where the autistic child grows into an adult, still without any intervention or equal access to resources. As Guterres said, we must do better. The time for inclusion is now.

Radica Mahase is the founder/director of Support Autism T&T