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Reema: More must be done on autism

Published: 
Wednesday, December 11, 2013
Reema Harrysingh-Carmona, wife of President Anthony Carmona, taking part in the UWI Spec International Half Marathon in October. PHOTO: ABRAHAM DIAZ

Autism is one of the causes that Reema Harrysingh-Carmona, the wife of President Anthony Carmona, will be supporting. 

 

In an interview with the T&T Guardian at the Office of the President, Queen’s Park Savannah, Port-of-Spain, Harrysingh-Carmona explained that last August, on the invitation of the wife of the UN Secretary General, Mrs Ban Soon-Taek, she attended the Sixth Annual World Focus on Autism at the 68th United Nations General Assembly. 

 

“I received the invitation from Mrs Ban Soon-Taek and felt this was a cause with which I could become involved,” Harrysingh-Carmona said.

 

She went with Dr Natalie Dick, an internationally certified specialist developmental behavioural paediatrician who manages people with autism.

 

The delegation of two made history, as it was the first time that T&T had been invited to the conference.

 

For Mrs Harrysingh-Carmona, advocating for the disabled is just an extension of her interest in health and wellness issues. The public became aware of the President’s wife’s athletic abilities when she participated in the UWI Spec Half-marathon in October. 

 

“I have been running for years and I got other members of staff to join me and we participated in the marathon as a team,” she said.

 

Also, back in June, while giving the feature address at the opening of the 23rd symposium of the Diabetes Association at the UWI Tarouba Campus, she pleaded with parents to deal with the scourge of obesity by eliminating junk food from their children’s diet. And while she said she hopes to do some work in that area, for now her focus is autism.

 

“Dr Dick has been toiling in the trenches within the public health system, trying to get childhood disabilities, including autism, on the front burner of various administrations as far back as when John Rahael was health minister,” Harrysingh-Carmona said. She said she feels it is time for those efforts to bear fruit.

 

Autism, Dick explained, is “a brain-based developmental disorder which affects any colour, class creed or race of people.” She said it is generally discovered during childhood and those affected have challenges communicating with language and also socially, and usually display very odd and repetitive patterns of behaviour.

 

“At face value, the person may look normal or average but on interaction you will discover that something is wrong. 

 

“With a very young child, parents may not even realise something is wrong, they may simply think the child is just late in talking or stubborn, odd, or even unusually well behaved,” Dick said.

 

She said, however, that a child who goes off and plays for long periods alone, quietly, may not be exhibiting appropriate behaviour, depending on his or her age.

T&T way behind

 

So where are we in T&T in terms of autism? 

 

According to Dick, we have no epidemiologic data.

 

“We are not where we should be in terms of making the diagnosis or collecting data or even allocating resources towards research and data collection as we should. Most of the times we have to make estimations based on our clinical experience or just rely on small studies with less than robust methodology.”

 

So in the absence of facts, one would have to hazard a guess, based on international statistics, which say some ten to 15 per cent of the world’s population suffer from a disability. How does that translate for autism in T&T?

 

“No one can responsibly say. We just do not know the figures,” Dick said. 

 

Even Prime Minister Kamla Persad-Bissessar, speaking at a cocktail reception at the UN Consulate General of T&T which coincided with the conference, conceded that T&T, “while possessing the wealth, lacked the sustainable and comprehensive policies and programmes to benefit persons with autism as well as other disabilities.”

 

Harrysingh-Carmona wants this to change. The conference, she said, served to enlighten her about the disorder and the challenges faced by those affected. 

 

“You hear of it, but I never knew it was so widespread on an international level. I was also struck by how developed countries were so far ahead of us in terms of treating with autism-related issues,” Harrysingh-Carmona said.

Legislation key 

 

The president’s wife wants more focus to be placed on the T&T situation and wants this to be done from a governmental level. She wants to see policy put in place to govern and manage the many problems and concerns linked to disabilities, especially autism—and she may well get some support from her husband with this. 

 

One of the short-term action items for T&T arising out of the conference, is “for a public statement to be issued from the Office of the President advocating for greater emphasis and meaningful action to be placed on the major issues relevant to persons with disabilities, including the pressing need for T&T to ratify the UN Convention on the Rights of Persons with Disabilities (UNCRPD).”

 

It is projected that ratification, as a consequence, would include “relevant legislation to facilitate equitable access for all people with disabilities (not just autism) to appropriate education, evidence-based appropriate therapeutic intervention, equitable access to appropriate and relevant skills building, academic and vocational training, equal access to employment and access of caregivers to respite care,” according to a conference document. 

 

Her Excellency has also been asked to endorse the Global Autism Public Awareness Initiative, specifically Light it up Blue 2014, when landmarks, buildings, hotels, bridges, commercial and corporate enterprises, as well as individual homes and communities, are illuminated with blue lights to spread autism awareness for International Day for Autism on April 2.

 

While Harrysingh-Carmona was in New York, she also attended the Fashion for Development (F4D) First Ladies luncheon and fashion show, which was billed as “a celebration of diversity and global economics through fashion.”

 

According to F4D’s web site, “the goal of F4D is to achieve a partnership between diplomacy and fashion, using the UN Millennium Development Goals and another UN initiative, Every Woman Every Child. The medium-term goal is for Harrysingh-Carmona to participate in the development of a similar fund-raising project in T&T. 

 

Such projects are intended to raise funds to support research, the creation of a multi-disciplinary centre for diagnosis and treatment and sustainable funds for interventions and training, parenting/caregiver workshops and sibling support groups—not just to benefit people with autism but for disabilities and disorders across the board, Harrysingh-Carmona pointed out.

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