Autism advocacy takes centre stage

Delfien Edwards, a senior medical social worker, believes that 10 years after concerns were raised about approximately 600 children being born and diagnosed with autism spectrum disorders (ASD) annually, enough has not been done to lower the number of those left without support.

Additionally, she believes the concerns for autism and investment into its awareness have further been reduced due to the pandemic. There has also been a pull of some funding islandwide in the usual awareness drive, especially during Autism Awareness Month, which is recognised annually in April.

“A lot of persons are not so familiar with autism. They’re really not on board. ... They really don’t get as much support for special needs and mental health, because I work in the Department of Psychiatry, which deals with a lot of mental health conditions, and the challenges are numerous and the support is limited, so while we are slowly turning, they’re not turning fast enough like you would get support for sickle cell or other illnesses [such as] HIV, you have that more supported and more funded, while you have mental health still struggling and autism falls along that line,” Edwards, who works at The University Hospital of the West Indies (UHWI), told The Gleaner.

With that in mind, instead of the UHWI hosting its usual seminar to bring awareness to the illness, on Tuesday, Edwards led a group from the hospital and other volunteers to renovate the Promise Learning Centre, one of the capital city’s preferred institutions for autistic children, to engage in a renovation project.

COSTLY PROJECT

“A project of this nature, as simple as it may seem, it cost us over $300,000 just to do the renovation, and that still does not even cut half of what needs to be done,” Edwards said.

“When we heard that Promise Learning Centre was having some challenges ... and they wanted assistance with renovating the building, we decided to take on that project to renovate their music room, the playground, the sensory room, so we decided that we are going to take on the playground this year,” she said.

She said the community outreach project on the part of UHWI was an annual calendar event, but was scrapped during the pandemic, and the group was set on having a return.

“We decided to resume this year with a community outreach project, because now we want to take it to the community. We don’t want to just limit it to the department or to the hospital, because as social workers, we’re advocates. We’re community workers as well,” said Edwards.

She hopes more people or organisations will invest in autism awareness, noting that partnerships are crucial for outreach to continuously take place, especially among young persons with children who are severely autistic.

“There’s a need for persons [to assist] persons who are struggling with autism, particularly the parents of children who are diagnosed with autism or parents who have children with some developmental disorder or developmental delays, and they don’t know what to do [or] where to turn when they hear of the diagnosis,” Edwards told The Gleaner.

“And it can be very devastating for the caregivers, because children with autism, it affects their social interaction and it’s a neurodevelopmental disorder, so they don’t function like regular persons. They learn differently, so they are differently abled, so I really want to bring across awareness to let persons know,” he said.

The UHWI has an extensive autism programme, where parents and guardians can take children they suspect of being autistic to get assessed.

ainsworth.morris@gleanerjm.com