Autism awareness month is over, what now?

DR RADICA MAHASE

THERE is a poster on social media which says "April is Autism Awareness Month. But in my house it is also every other month of the year." Many parents/caregivers will agree with this – when April is done the fight continues. In fact, the struggles never stop.

I was quite happy to see that, this year, many more individuals and organisations came on board to celebrate Autism Awareness Day on social media. Local television and newspapers also caught on and carried various articles and stories about autism.

In the midst of all the celebrations, Support Autism T&T celebrated its fifth birthday! We’re still a baby NGO but considering that in five years we have been able to make such a deep impact on TT, we are very proud of and happy with our work! We have moved from two main events when we started to do events throughout the year, throughout Trinidad. This month we reached out to the public in areas such as St Helena, Princes Town and Felicity as well as C3 Centre in San Fernando through our autism outreach booths.

In five years we have moved from ten youth volunteers to 200+ youth volunteers between ten-to 21 years. I was always very clear that this NGO would be completely based on the concept of volunteerism and our focus has and continues to be on our youth volunteers. They make every single event a successful and fun event for those who attend. They are the ones who conceptualise, develop and implement activities for those with autism and their families, they interact with the public at our outreach booths and they are formidable youth autism advocates, capable of changing our society.

I was also always very clear that Support Autism T&T would go beyond awareness and words like "acceptance" and "inclusion" dominated my vocabulary. I want changes at a national level, in policies, in the public sector, available to every single individual and our advocacy has been about that. Today I am very happy to see that Support Autism T&T’s ideas are embraced and shared so freely by other NGOs and that they are also advocating for inclusion.

This year I am happy to see the focus on making technology accessible, the UN 2019 theme for Autism Awareness Day. Three years ago Support Autism T&T started the Angels for Autism project, distributing Ipads/tablets to children who needed them, who were not enrolled schools, with little or no access to the tools for intellectual development. Since then we have seen the impact that access to technology can have on the life of an individual with autism and we encourage other groups and organisations, and more importantly, the Ministry of Education to provide devices accessible to those who need it.

We still have a long way to go and so much work ahead of us. In recent months we have seen special needs being discussed at the level of the Senate but if the topic is shut down at that level or those in positions of power adopt a defensive stance then we will not be able to progress any further. I had hopes that discussion at that level signalled the start to the process of real change at a national level. I strongly believe that right now we desperately need a national policy and action plan on autism and I look forward to the day when that will be implemented in an effective manner so that every single individual with autism will have the opportunity to lead a fulfilling life in TT.

Because at the end of April, we have to question whether social media posts have created any lasting changes for those with autism. In fact, what happens now that April is coming to an end? Have we put anything significant in place at a national level, to help those with autism? As much as NGOs like Support Autism T&T can try to help those with autism and advocate for change at the end of the day we need the government to implement policies. I anticipate that day when the Office of the Prime Minister or the Office of the President will issue a statement stating that it will take the lead in policy development and implementation for those with autism/special needs. Until that day, Support Autism T&T will continue to work towards making TT an autism-friendly country.

Dr Radica Mahase is founder/director, Support Autism T&T