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UCT hosts international congress to highlight child and adolescent mental health and autism in Africa

8 November 2017

The University of Cape Town’s Division of Child and Adolescent Psychiatry hosted the first ever International Meeting for Autism Research (IMFAR) on African soil – in conjunction with the 19th Congress of the South African Association for Child & Adolescent Psychiatry and Allied Professions (SA-ACAPAP).

The congress, which took place in early September 2017 at the Spier Conference Centre in Stellenbosch, brought together international experts in mental health and autism, with a particular focus on Africa. It was a milestone get together aimed at tackling the needs of the millions of Africans suffering mental health disorders or autism spectrum disorders (ASD).

World-leading clinical researchers scheduled to address the conference included Prof Simon Baron-Cohen (Cambridge, UK), Prof Geraldine Dawson (Duke, USA) and Prof Helmut Remschmidt (Marburg, Germany).

Prof Petrus de Vries, who is the Sue Struengmann Professor of Child and Adolescent Psychiatry at UCT and Chairman of the Congress, said: “I was delighted to have about 300 participants from more than 25 countries. We had over 150 presentations submitted from all over the world. It is proof of worldwide interest in the needs of the African continent, and of growth in African research in child and adolescent mental health, autism and related neurodevelopmental disorders.”

Prof de Vries added that they have also joined forces with the African Association for Child and Adolescent Mental Health, the Paediatric Neurology and Developmental Association of Southern Africa and the South African Institute for Sensory Integration.

“We really wanted this meeting to be as joined-up as possible. One of the highlights was an African autism stakeholder event to bring together professionals, families and individuals with ASD,” he said.

Prof de Vries concluded: “I sincerely hope that this congress was the start of an African movement to improve mental health care for children and adolescents, and to develop appropriate ways to support children, adolescents and families who live with ASD.”

Report: South African children with autism may lack access to schools

Only about 0.1 percent of children in the Western Cape province of South Africa have autism, according to a review of school records. The unpublished results were presented today at the 2017 Regional International Meeting for Autism Research in Stellenbosch, South Africa.

The worldwide prevalence of autism is at least 10 times higher, at 1 to 2 percent. “I have no reason to believe [autism] is less common here than in the rest of the world,” says lead investigator Petrus de Vries, Sue Struengmann Professor of Child and Adolescent Psychiatry at the University of Cape Town.

Instead, de Vries says the rate could be artificially low because some children are undiagnosed, and others are not in school.

He and his colleagues arrived at their estimate by mining the province’s Centralized Education Management Information System, a database that includes diagnostic information for students. They also scanned the Consolidated Waiting List, a log of children who are waiting for school placement.

Focusing on records from 2016, they identified 1,684 children with autism in the province; 940 of the children attend schools, and the remaining 744 are on the waiting list.

South Africa has failed to enforce the right to education for many children with disabilities, according to a 2015 Human Rights Watch report. In the United States, by contrast, the Individuals with Disabilities Education Act (IDEA) grants children with autism the right to public education.

“Until I came here [to South Africa], I didn’t realize that so many of the children with autism are not in school,” says Geraldine Dawson, professor of psychiatry and behavioural sciences at Duke University in Durham, North Carolina. “It’s like the United States in the 1950s, before IDEA.”

Education estimates:

Of the 940 children with autism enrolled in schools, about 90 percent attend schools for children with special needs; only 10 percent attend mainstream schools. About 83 percent go to schools in metropolitan areas, and 57 percent speak English as their primary language.

De Vries says he suspects many children with autism are not in school or are undiagnosed, particularly if they live in rural areas or speak languages other than English.

Of the 744 children with autism on the waiting list for school, 89 percent are waiting for schools in urban areas. “The kids on that waiting list wait an average of three years,” de Vries says. “They wait at home, and they get nothing” in terms of education or treatment.

The need for access to schools is becoming more urgent. Although the proportion of children with autism in Western Cape schools grew 76 percent between 2012 to 2016, that of children on waiting lists increased 276 percent during the same period.

Autism diagnoses recorded in school records are sometimes reported by parents and teachers rather than child psychiatrists, says Sarosha Pillay, a graduate student in de Vries’ lab who presented the findings. Some of the diagnoses in the study may, as a result, be unreliable.

Report by Nicholette Zeliadt

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