Autism – a complex neurological condition – is recognised as a global public health concern by the World Health Organisation.
But lower-income countries like South Africa are not able to meet the large and growing needs of children, families and communities affected by autism, Prof Petrus de Vries told Africa Check. He is head of the Centre for Autism Research in Africa.
Here we answer frequently asked questions about autism.
1. What is autism?
Autism is best understood as a group of developmental disorders that together make up autism spectrum disorder, known as ASD. People with autism tend to have difficulty with social interaction, communication and behaviour.
The scientific community does not know all the causes of ASD. Both genes and other influences, such as the environment, appear to affect crucial aspects of early brain development. Autism is found in every country, among every ethnic group and in every socioeconomic class. There is no difference in what autism looks like in different parts of the world or in different cultures.
Autism is more frequently found in boys than in girls. The ratio often quoted is four to one, or four boys diagnosed for every one girl, but most recent studies put it at three to one. One explanation for the difference is that while boys have one X and one Y chromosome, girls have two X chromosomes, and these may protect them against autism. This is known as the female protective effect.
However, Dr Neil McGibbon, a Cape Town-based clinical psychologist who works with teenagers on the spectrum, told Africa Check “there have been some recent indications that [girls] might have been overlooked in error and as a result not sufficient research done”. This is because the autism spectrum looks different in girls.
In most cases, you can’t tell if someone has autism by their appearance. But those on the spectrum tend to communicate, interact with others, behave and learn in ways that are different to most other people. This means they may need lots of help in their daily lives. Most of them struggle to fit into a society built for people who do not have the disorder.
2. How many people in South Africa have autism?
“We don’t really know,” said De Vries, a professor at the University of Cape Town who focuses on child and adolescent psychiatry. He explained that no study has yet been done to determine the total number of cases in South Africa, or anywhere else in sub-Saharan Africa.
“However, the global rates are in the region of 1% to 2% and we have no reason to believe that it would be any less here,” he said.
Vicky Lamb, the national education facilitator of Autism South Africa, estimates that about a million people in South Africa have autism, based on global statistics. However, she added, there are not “enough professionals in the country who are able to make a diagnosis”.
This shortage of trained professionals means only some of the South Africans with autism will actually be diagnosed. In 2015, there were only 50 child and adolescent psychiatrists serving the population of sub-Saharan Africa.
Differences in language and culture also lower the rate of diagnosis. Some of the tools used to diagnose autism in the English-speaking world are not ideally suited to diagnosis in South Africa and elsewhere on the continent. De Vries and his colleagues are working to translate and adapt these tools to the African context.
3. Is there an increase in the number of cases?
The number of people diagnosed with an autism spectrum disorder is rising. But this is because more people are being diagnosed, not because the disorder itself is spreading.
“Yes, there is a clear increase in numbers,” De Vries told Africa Check. “People are more aware, doctors are better at diagnosis and so forth. There seems to be a steady increase of children referred to autism spectrum disorder schools and clinics.”
According to Lamb, as more signs of autism have been identified over the years, so more people have qualified for an autism diagnosis. She added that greater awareness of autism could also explain the increase in the number of cases.
A 2015 study in the United States argued that autism rates had probably remained unchanged since at least the 1990s. It pointed out that as autism diagnoses had increased, diagnoses of “intellectual disability” had decreased at almost exactly the same rate. This indicated that autism had previously been misdiagnosed.
4. Do vaccines cause autism?
The incorrect idea that the vaccine against measles, mumps and rubella – known as MMR – causes autism has prompted some South Africans to refuse to have children in their care vaccinated against the diseases. This puts these (unvaccinated) children at risk, especially those with weak immune systems, such as premature babies.
The idea came from a study conducted on 12 children, published in the prestigious journal The Lancet in 1998 but later completely retracted. Lead author Andrew Wakefield was scrapped from the UK’s medical register for his serious ethical breaches and dishonesty.
One breach was that Wakefield failed to disclose to The Lancet that he was being paid by a lawyer hoping to mount a lawsuit against the MMR vaccine manufacturer. Another was that he was patenting a new measles vaccine and so would benefit from an alternative to the MMR vaccine.
However, the vaccine is currently only available in the private sector. Of the three diseases, South Africa’s public hospitals and clinics vaccinate against only measles. (Part of the reason is that South African women have a high rate of natural immunity to rubella. Introducing a rubella-containing vaccine in childhood may actually increase the number of girls reaching childbearing age who aren’t properly protected against rubella, which can cause birth defects.)
5. Vaccines don’t cause autism. What does?
De Vries explained that autism is probably caused by lots of different things. “A bit like epilepsy, we are likely to find hundreds of possible causes,” he said. Studies have found some strong family links, suggesting that the disorder is partly genetic.
But De Vries believes the causes of autism should not be the priority of researchers and academics in Africa.
“The priority needs to be to make parents and carers know what it looks like so they can seek help,” he said. Next, primary healthcare providers should be trained to screen for autism and related disabilities. After that, ways to improve the lives of children with autism, and their families, must be found, De Vries added.
We must “make sure there are adequate educational opportunities for all children with autism spectrum disorder, not just the few who have funds”.
As a snapshot of the challenges facing those on the spectrum, data from the Western Cape Education Department for 2016 found 1,684 children on the spectrum. Only 940 of them were enrolled in school.
And, of course, autistic children become autistic adults, with even less assistance available. The most recent statistics for unemployment among autistic adults in the United States found only 14% in paid employment, and only 20% of those were college graduates.
Autism can affect anyone from any group or social class. Correct diagnosis of the disorder is increasing, but in low- and middle-income countries such as South Africa, more needs to be done. We need better tools to diagnose autism here, and more support for children and adults on the spectrum – and their families – once they have been diagnosed.
Researched by Karen Jeynes, Patrick Ngassa Piotie & Ina Skosana
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