Autism South Africa (A;SA) says that there are massive service delivery gaps in the diagnosis, treatment, and management of autism spectrum disorder (ASD). The limited data collection on the prevalence of autism in the country and research on it is an additional restriction. A concerning observation ahead of World Autism Day on the 2nd of April, 2023.

This year’s 2023 World Autism Awareness Day theme is “Transforming the narrative: Contributions at home, at work, in the arts and in policymaking”, a challenging idea to make a reality for autistic people who are public health users in SA because of the lack of support services for them. 

SA relies on statistics from 2018 that found that 2% of the population is affected by autism. A study that was conducted in primary schools in the Western Cape, published in 2020, showed that autism is increasing at a rapid rate. Although research within school systems that could inform rates and prevalence is scarce. 

From a population of just over one million learners in the province, a total of 940 children with a diagnosis of ASD were identified. Representing the rate of 0.08%.  Most of the children (83%) attended schools in the City of Cape Town and only 17% were in rural areas. 10% of these learners were incorrectly placed in mainstream schools. 

“The service delivery gap is larger for adults. There is more focus on diagnosing children because so many adults were undiagnosed in childhood. Their autism was masked by behaviour like intense interests and loss of concentration,“ says A;SA National Director Juliet Carter.

Carter’s daughter is autistic. She was diagnosed when she was fifteen. She says it is typical for girls to mask for this long. Autism diagnosis is possible in infancy. 

Children lost in education system 

Autism is a lifelong condition. It expands through to one’s social, and educational experiences. Carter says there aren’t enough specialised schools catering for autistic learners. This leads to children not getting a good education

“We also don’t have enough properly trained teachers.  This spills over into tertiary education as well.  The universities do not have proper accommodations for autistic adults on campus.”

A;SA says slight improvements are evident as a result of the department training more teachers and establishing more schools. However, Limpopo and Mpumalanga still don’t have autism-specific schools.

No communication, medication stockouts

Dr Tumelo Leeuw is a paediatrician based in Mafikeng with a special interest in ASD. She started working with autism in both the private and public sectors in 2016. 

Leeuw says there is “nothing that tells you about autism in public hospitals and clinics.” She notes that information communication around autism becomes widely available when there is a campaign. 

Leeuw says that she still sees many communities in rural areas that believe that autism is a result of witchcraft or the fault of the mother’s behaviour during pregnancy. 

Leading to problems for autistic adults who are unemployed and are seeking a disability grant. A;SA says it is an issue because autism is not a visual disability and autistic people are often discriminated against when it comes to this service. 

“Some hospitals run out of medication. We visited a hospital in Gauteng earlier this year and observed the shortage of the longer working dosage of Ritalin which is ADHD medication.”

The shortage of this medication is common.  Leeuw adds the only medicine available in the public health sector for ADHD is Ritalin LA (Ritalin long-acting). 

“There’s a whole variety of medication options in the private sector, unlike the public. If there are comorbidities or challenging behaviour, we usually prescribe Risperdal for autistic adults – but this is not available in the public sector,” says Leeuw.

Risperdal can cost between R 3000 to R 5000 for one month’s prescription. Medical aids also don’t consider autism as a chronic condition, leaving many parents under financial strain.

It is important to note there is no medical treatment for autism, however, co-occurring conditions like epilepsy, ADHD, and anxiety can be treated. 

Healthcare workers untrained in autism 

Leeuw says the country also does not have enough healthcare workers trained and educated to care for people who are autistic.  

“There is generally a waiting list of about three to six months.  When healthcare workers recognise symptoms and want to refer a child to a hospital, they have to be placed on a long waiting list to make an appointment. From then, they’re seen by a doctor. Other districts don’t have neurodevelopmental clinics that run at regional hospitals that they can refer patients to.”

The Dr Kenneth Kaunda District in the North West has to refer their patients to Baragwanath Hospital or Charlotte Maxeke in Gauteng, which is almost 200 kilometres away. Even when children do go into the hospital, Leeuw says that there is a struggle to see other specialised health providers like Speech and Occupational Therapists (OT). Not to mention the travel costs.

The Northern Cape is the most under-resourced province with autism services – currently, all the children and adults have to travel to the Free State. There is one doctor in Limpopo and two in Mpumalanga. North West and Gauteng have waiting lists between three and six months. During the lockdown, people had to wait over a year for assessments. 

“We’re a long way off from where we should be,” says Carter. 

The National Department of Health did not respond to interview questions by the time of the deadline. – Health-e News