No increase in number of children with autism, but…

Patron of the Jamaica Autism Support Association Professor Maureen Samms-Vaughan says she is now diagnosing “many children” at the high school level with autism who had been under the radar because they had no significant symptoms.

She, however, emphasised that there is “no evidence to support an increase in the prevalence of autism in Jamaica”.

Samms-Vaughan, professor emeritus of Child Health, Child Development and Behaviour, was responding to concerns raised by a participant during a virtual presentation by help group Choose Life International “about what seems to be a dramatic increase in children being diagnosed with autism spectrum disorder”.

Presenter Dr Ganesh Shetty, consultant child and adolescent psychologist, responding to that concern said, “Yes, it is so, and the reason for it is so many genetic and environmental factors which perpetuate the occurrence of autism spectrum disorder and also, it is about awareness; more parents are aware, more teachers are aware, so they find early signs and refer them for assessment and treatment.”

“Before, I think they would just be seen as some weird and crazy, lazy, stupid people who are not doing well in school, but now we see that these kids are really struggling with a neurodevelopmental disorder which needs assessment and treatment,” he stated.

When contacted by the Jamaica Observer, Dr Shetty, however, said he was speaking from just experience and had no formal figures to substantiate the claim.

But Professor Samms-Vaughan, delving into the issue with the Observer on Monday, said, “We have no information in Jamaica about the prevalence of autism in Jamaica. There is no data for Jamaica because prevalence studies are extremely expensive, and despite my best efforts to get someone to fund that kind of study — not just autism, but the prevalence of developmental disabilities in Jamaica — we have not been able to get that done.”

She said Jamaica, given this deficiency, estimates from the best figures that have come out of the United States.

“They do this assessment every three years,” she said, while pointing out that “a lot of persons with autism are not diagnosed”.

“I tell everybody that they went to school with persons with autism, they work with persons with autism, they just don’t know. The research suggests that what is happening with autism is that we are getting better at diagnosing it. So persons who you would not have diagnosed years ago with autism, now we understand better and milder presentations,” she told the Observer.

“We have absolutely no evidence to suggest an actual increase,” the veteran said, adding, “The information we have to date is that we are better at diagnosing and we are diagnosing more milder cases.”

Asked what milder cases looked like, she said, “Children who have more severe autism get diagnosed earlier because their language doesn’t develop, they don’t respond to their names, they are slower in developing the typical milestones than we would expect, but there are children with autism who develop appropriately, so the average person cannot detect and sometimes we don’t diagnose until they are in their adulthood or in high school.”

“I am diagnosing so many children now that are in high school, where their diagnosis is being made for the first time. Those children, what happened to them is that they are able to kind of stay under the radar with no significant symptoms until they get to the teenage years when social pressures, social interactions are greater, where you are meant to conform with your peer group, and children with autism tend not to have the same level of social skills as their teenage peers and so they stick out a little like sore thumbs,” Professor Samms-Vaughan told the Observer.

She said children with mild autism often have “writing problems”.

“Their fine motor skills [are underdeveloped], so they write slower, they write later, they tie their laces later and, sadly, many of these children get beaten at school because teachers consider them lazy to write rather than understanding. It happens too often that children get beaten when they have an underlying problem. It’s such a sad thing. I have to write letters all the time to explain the children’s behaviour,” she told the Observer.

“Now that we look back on the behaviours of a number of people who we now revere for their skills, it is being suggested that people like Mozart (legendary composer of the Classical period), Michelangelo (revered sculptor and painter), and Albert Einstein (theoretical physicist), that all of these persons were on the spectrum. We can’t know for sure, but based on some of the behaviours they displayed they would now certainly be referred for an evaluation at this time,” she said.

Evaluations, the professor said, can be conducted by psychiatrists.

“Children need to be diagnosed by qualified professionals. It always concerns me that sometimes people can just say your child is mild, your child is moderate, or your child is severe, but there are very specific tests to make these kinds of distinctions and it shouldn’t be bandied about … and schools sometimes say we will only take your child if they are mild or moderate without understanding what that means,” she pointed out.

In the meantime, Professor Samms -Vaughan said, “One in 36 children are affected.”

“It’s like one child in every class in every school in Jamaica. It used to be one in 2,500 many years ago,” she shared.

The child and family clinic at University Hospital of the West Indies is the main public sector location for diagnosis.

Professor Samms-Vaughan, in noting that children are screened for indications of autism through questions incorporated in the Jamaica Child Health Passport when they are taken for their 18-month visit, said the document is being revised for a more in-depth instrument.

She, in the meantime, noted that the long waiting lists being seen in Jamaica are not unique and exist in the United States and the United Kingdom as well.

In referencing the various risk factors for autism, Professor Samms-Vaughan is imploring parents to refrain from exposing children below the age of two to screen time.

“Tablets, anything with a screen, absolutely not recommend for children under the age of 2 years, zero to 2 years, the only screen time recommended is video calls with a familiar party, that is all,” she stressed. In noting that parents might get excited when their babies are able to detect numbers, shapes, and colours early and associate this with the educational value of devices, she said, “Children with autism have an affinity for numbers, letters, shapes, and colours.”

“They learn them quicker than other children and sometimes teachers think they are absolutely brilliant. People send me videos of kids who know all kinds of things early and I am usually a little concerned. Outside of autism, screen time has been shown to be associated with delayed development,” she said.

In addition, Professor Samms-Vaughan said women who conceive after age 35 risk having a child with autism.