Although autism can be reliably diagnosed by age two, in practice, Dr Birgit Schlegel, a paediatric neurologist at Mediclinic Constantiaberg in Cape Town, says most children are only diagnosed around the age of five – and some not until adolescence or adulthood. “Later diagnosis often means the individual has lived for years with emotional, behavioural and social difficulties that were not properly understood or supported.” And, research suggests that an adult autism diagnosis is common among women. That’s because girls with autism spectrum disorder (ASD) are more likely to camouflage their symptoms than boys. This further delays a diagnosis.
Globally, one in every 100 children is diagnosed with autism spectrum disorder (ASD). In the United States, however, this figure has risen sharply to one in 31. Boys are more likely to be diagnosed than girls – a pattern that holds true for South Africa as well. In South Africa, no data exists that points to how many people receive an adult autism diagnosis. But emerging research suggests that almost 80% of autistic females remain undiagnosed by age 18.
Even based on the likely conservative estimate of 1% of the population being affected, hundreds of thousands of people in South Africa are likely living with autism. Many may be undiagnosed due to limited resources, stigma, or lack of awareness. As prevalence rises worldwide, so too does the need for accessible screening, informed care, and support for families. Here’s what to know about an adult autism diagnosis, and how ASD manifests for women.
What Is Autism Spectrum Disorder?
Autism is a neurodevelopmental disorder characterised by challenges in social communication and interaction, as well as restricted and repetitive behaviours. “This means that there are differences in the way the brain develops or in the way brain connections are made and maintained. This, in turn, affects the way that information is processed, or skills are acquired,” explains Dr Mwanja Chundu, specialist psychiatrist at Mediclinic Crescent Mental Health Services in Cape Town. “These [symptoms] are impairments in reciprocal social communication and social interaction, and restricted, repetitive patterns of behaviour, interests, or activities.”
Some individuals may also be highly sensitive to everyday sensory experiences – such as loud noises, bright lights, certain textures or strong smells. These can feel overwhelming or even painful. [People with ASD] may also struggle with communication, both in speaking and in understanding body language, facial expressions, or tone of voice.
As Dr Schlegel points out, the term “spectrum” in ASD refers to the wide range of symptoms and also severity. “While earlier diagnostic frameworks distinguished between separate types of autism, the disorder is now classified based on severity. And, more importantly, on the level of support required.”
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How Is ASD – And An Autism Diagnosis – Different Among Women?
“Women are more likely to mask their autism symptoms by compensating for any deficits, or mimicking expected social behaviours,” explains Dr Chundu. “This makes the social challenges they face more subtle. Their special interests may be less focused on inanimate objects or solitary activities.” Because of this “masking”, women can go years before being screened for ASD. Their neurology also differs from boys. A Stanford University School of Medicine study compared the brain structures of boys and girls. They found motor-related differences, which means that girls are less likely to visually display repetitive motions, like hand-flapping, than boys.
“Women often don’t seek a diagnosis until they wear out their ability to compensate for the deficits. They’re also not picked out for further evaluation in childhood. This is because their compensatory strategies keep them from standing out,” says Dr Chundu. “Over time, they become emotionally and mentally depleted as these strategies require constant vigilance and adaptation in social, work and school settings. This is often when they finally present for assistance with coping with their burnout out and the underlying autistic symptoms become apparent as the cause of the burnout.” As to an adult autism diagnosis, a later-in-life diagnosis doesn’t mean you’ve acquired ASD 30 years into life. Rather, it’s a symptom of other factors. “Lack of adequate screening or the presence of subtle symptoms with minimal impairment leads to late diagnosis. Autism, like other neurodevelopmental disorders, is a lifelong condition,” clarifies Dr Chundu.
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How To Get Screened For ASD In South Africa
In South Africa, screening opportunities do exist. A formal diagnosis involves a clinical assessment with a qualified psychiatrist, psychologist or occupational therapist (or another clinician) makes an evaluation using the DSM-5 diagnostic criteria. “This is the only way to be sure about a diagnosis,” says Dr Chundu. “However, there are many freely available online screening questionnaires that can be helpful in determining if further assessment would be helpful.”
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How Is ASD Treated?
Effective treatment for autism depends on a highly individualised approach. “No two individuals with autism will have exactly the same needs,” Dr Schlegel explains. “The most effective interventions combine behavioural, developmental, educational and psychosocial elements – often alongside speech and occupational therapy to help with communication and daily living skills.”
Treatment or assistance for ASD might involve any number of healthcare providers, from “clinical, counselling, educational and neuropsychologists, occupational therapists, speech therapists, social workers and other health care providers who specialise in working with this patient population,” says Dr Chundu. Don’t discount support groups, either, she adds, “Social media hosts several online communities for neurodivergent women.”
“We need broader awareness and earlier identification,” says Dr Schlegel. “We must understand the spectrum for what it is – a diverse and lifelong condition requiring compassion, expertise and personalised support.”
