By Oringe Florence Nafula
NAIROBI, Kenya, April 27 – Since the description of the first case of autism 70 years ago, there has been exponential research over the years addressing better understanding of Autism Spectrum Disorders.
While the cause remains poorly understood, current evidence indicates that multifactorial factors play a role, with environmental factors interacting with underpinning genetic factors.
Autism is a neurodevelopmental disorder characterized by restricted and repetitive behaviours, attitudes, and interests, as well as impaired social interaction and communication. Early symptoms may usually be apparent before a child reaches the age of two years, but most children do not receive a diagnosis until after 5 years.
Beyond the core symptoms, many affected children also present with co-occurring conditions including other neurodevelopmental conditions such as Attention Deficit/Hyperactivity Disorder (ADHD), intellectual disability or developmental motor disorders, medical conditions such as allergies and gut problems, neurologic conditions such as seizures and sleep problems, and sometimes psychiatric symptoms such as pica, rumination and behavioural issues.
Global data indicates a rising prevalence of ASD in the last decade, with recent data from the Centre for Disease Control (CDC) in the USA reporting a prevalence of 1 in 36 children under 8 in the USA.
Though the local data on autism prevalence unavailable, it likely to be very similar. It is even scarier to think that more children are getting diagnosed with autism than with cancer, AIDS, and diabetes combined.
Public awareness and understanding of this disorder in our local settings remains very limited. There are a lot of myths and misinformation around ASD in our communities.
Some have associated it with being possessed by evil spirits, curses, works of God, or witchcraft. These myths contribute to high stigma, leading to isolation and discrimination of those affected.
In some cases, children on the autism spectrum have been beaten, hidden away, or even killed because it was thought that they were possessed by demons.
There is need to educate the public on these disorders. The spectrum encompasses children with a wide variety of functioning and behaviours, who demonstrate varied cognitive functioning, with some demonstrating exceptional skills in limited areas such as music, math, and art.
Diagnostic capacity remains a big challenge in our settings. There is need for capacity building of our health care providers, early childhood educators, and social workers, alongside community sensitization to enable early diagnosis and linkage to early interventions.
To date, no cure for ASD has been found. However, early intervention therapies including occupational therapy, speech therapy, behavioural therapy, psychotherapy, pharmacotherapy and education supports have been found to offer the best hope of improving outcomes.
Unfortunately, recent years have also witnessed an explosion of all manner of purported ASD cures on social media, mainstream media, research bodies, and other forums by all manner of people.
The challenge has been that most of these interventions are not evidence based, may be toxic or cause harm to the child. Some are very costly, increase the burden on already scarce household resources without offering tangible results.
To mitigate this, the medical community must lead the charge in public information and autism awareness in ways that promote accurate representations of ASD in the real world and recommend accurate management methods to families.
Such an approach will be invaluable in providing families with the tools they need to seek early detection and management assistance from health professionals.
This year’s World Autism Day, celebrated on April 2, demonstrated that there is a strong desire among various health sector stakeholders to raise awareness of ASD and assist families in obtaining the services they require.
Development organizations, the private sector, individuals, and the government have all spoken out in support of raising autism awareness in Kenya.
It is now time to put words into action. On our part, and in a bid to contribute to these efforts, Gertrude’s Children’s Hospital is hosting an autism awareness medical camp at the Mali Therapy Centre in Kibera.
We will bring the expertise of our Centre for Child Development closer to some of the families who may require it the most.
As part of the camp, we will raise awareness among Kibera residents, which will hopefully help them identify cases of ASD when they arise and give them the courage to seek professional help when necessary.
In conclusion, we must continue to work together to raise awareness about the condition while also encouraging those living with it to be the best they can be while making the most of their lives.
The Dr. is a Consultant Developmental Paediatrician at Gertrude’s Childrens Hospital.
