Access to early screening, treatment and education can pave the way for a better quality of life for children and adults with Autism Spectrum Disorder (ASD), but a lack of awareness, trained professionals and support limits this in especially lower-income communities in South Africa, Africa and the world.
On World Autism Awareness Day (Tuesday, 2 April), the South African Society of Psychiatrists (SASOP) highlighted that autism is found across all countries, ethnic groups and socio-economic classes, affecting about 1-2% of the global population, yet resources that can improve the lives of those affected by autism are mainly limited to those who can pay for them.
In many affluent societies, ASD is usually diagnosed by the time the child is 3 years old, as the symptoms are seen early on in a child’s development and behaviours – the ways that they play, learn, speak or behave, particularly in a social context. It is diagnosed three to four times more often in boys than girls.
There are no typical biological or physical symptoms of ASD, and so screening and diagnosis is made clinically on the basis of detailed developmental history, behavioural observation, and using specifically-designed assessment tools.
SASOP member Dr Wendy Duncan, president of the South African Association of Child & Adolescent Psychiatry and Allied Professions (SA-ACAPAP), said ASD was previously thought of as occurring only in western industrialised countries, “but we now know this not to be true”.
“ASD is recognised by the World Health Organisation (WHO) as a global public health concern, but almost all that we know about it comes from western, high-income countries.
“There is a need for more research in South Africa, Africa and the developing world, to understand the nature and prevalence of autism, so that a better response can be developed to assist families and communities, guidance be provided to public health policy-makers, appropriate diagnostic tools can be developed and resources such as support and education can be provided,” she said.
In 2015, there were just 50 specialist child and adolescent psychiatrists serving the entire population of sub-Saharan Africa, she said, pointing to the need for training for health professionals, from primary care level through to specialised professionals, in order to improve early detection of autism and assist families with access to support.
Managing ASD and ensuring a better quality of life for those affected by autism starts with raising awareness amongst parents, caregivers, teachers and primary healthcare staff, to recognise symptoms and access screening tools to provide the correct diagnosis and provide treatment, she said.
Dr Duncan said early diagnosis and intervention were the key to equipping the child and their family with the skills and resources needed to ensure the best possible quality of life, because there is remarkable development that takes place in early childhood.
Access to education for children with autism is crucial, she said, with those in the “mild” area of the spectrum often able to be included in mainstream education provided there is particular recognition of their individual needs, while children at a more severe level need more intensive intervention and specialised education.
“Education plays a critical role in assisting those with autism to develop the social and communication skills to integrate and cope as far as possible with the world around them,” she said. “On the other hand, education of the community at large is important in helping families, educators and communities to modify their expectations of the individual with ASD
What is Autism Spectrum Disorder (ASD)?
Autism spectrum disorders, often referred to simply with the umbrella term “autism”, or “being on the spectrum”, incorporate disorders previously diagnosed separately – “classic” autism, Asperger syndrome, and pervasive developmental disorder not specified (PDD-NOS).
They are developmental disorders linked to early brain development. The causes are not clear, although genetics are believed to play a role as well as environmental factors.
Mental health professionals emphasise that ASD is not a psychological, emotional or behavioural disorder – children with autism are not “just badly behaved” – it is a brain-based, neuro-psychiatric condition that requires treatment and support.
ASD results in difficulties in social interaction, verbal and non-verbal communication, sensory perception (either heightened or lowered sense of touch, taste, smell, sight or hearing), and patterns of narrow interests, cognitive (thought) patterns and repetitive behaviours.
Some of the “red flags” that should be referred to a doctor or child development specialist such as a paediatrician, psychiatrist or psychologist include:
- Little awareness of, or disinterest in others, difficulty in interacting socially, lack of eye contact
- Social interactions predicated mainly on the child’s particular interests
- Distress caused by changes in routine or environment, especially extreme distress for no apparent reason
- Non-typical patterns of play, preferring to play alone, lack of imaginative play, repetitive behaviours or unusual habits such as rocking, flapping hands or constantly spinning objects
Gross or fine motor skill development that doesn’t match the usual developmental milestones
- Rigid thinking style, that may be without humour
- A dislike of being touched or held, or a sense of touch, taste, smell, sight or hearing that seems extra-sensitive, or less sensitive than usual; may result in very rigid food preferences
- Delayed or non-typical development of speech and language, or the child appearing not to hear
- Difficulties holding the perspective of another
Management Strategies for ASD
There is no specific medication for ASD itself, although medication may be prescribed for other conditions that exist alongside ASD, such as attention deficit hyperactivity disorder (ADHD), epilepsy, anxiety or other neurological conditions. Medication responses in children with ASD may not be typical and this arm of treatment often requires the input of a specialist.
Treatment generally starts with interventions that coach parents and caregivers on how to engage with a child with ASD. Knowing what to expect and how to support a child with ASD and has been found to have positive effects on the child’s social interaction, communication and behaviour.
Because of the differences in symptoms and severity of ASD, a family would usually work with a multi-disciplinary team of professionals to develop a programme best suited to the individual child.
These would typically aim to improve communication, cognitive and social skills, reduce distress for the child/individual and make positive behaviour changes.
Where to find out more and get help
Autism South Africa (ASA) advocates for greater awareness of autism, to educate the public, educators and policy-makers; and offers information resources, support and training for parents, caregivers and community organisations working with autism. Their practical, easy-to-understand guide to autism is published in seven of South Africa’s official languages. Find out more at www.aut2know.co.za