The invisible disability called autism

One of the invisible disabilities that medics in the country are calling for awareness about is Autism Spectrum Disorder, which affects neurodevelopmental processes rather than physical appearance.

Since there is no physical appearance for autism, The Karen Hospital head occupational therapist Mark Nyachieo says challenges associated with the condition are not immediately visible.

The medic said autistic individuals may not exhibit outward signs that signal their condition to others.

"It is a developmental disorder that affects communication, behaviour and social interaction," he said.

Although children are expected go through all the developmental milestones, autistic ones struggle with language and communication.

Autism is a behavioural , social, sensory, language and communication disorder thus it is dubbed an invisible disability.

The medic said autism is a spectrum in nature, meaning it manifests differently in each individual, such that the symptoms range from one child to another.

"That is why we are talking of levels of autism. Right now, the WHO has come up with function or performance as a health indicator for the level of autism," Nyachieo said.

Nyachieo said there are three classified levels of autism.

Level 1 is mild autism, where the least support is needed for the child to function in society. Level 2 is where the child needs moderate support.

Level 3 is the extreme in terms of behaviour, socialising and language and communication. Those with level 3 autism require significant support.

SENSORY DISORDER

When talking about sensory neurodevelopmental disorder, there are seven senses and not five as most people know.

"There are the five senses you know, then there are two extra. One is called proprioception, which deals with body positioning and space," Nyachieo said.

"The other sense is called vestibular, which deals with balance and coordination."

He said the two senses pick stimuli from the environment, which is processed and then there is an output behaviour.

"So when you see this dysfunction, either their neurological threshold is too high or too low. It is not normal. This child thus either overreacts or underreacts. That is why we have sensory craving behaviours, and others have sensory avoidant behaviors or unresponsive behaviours,"Nyachieo said.

"You will meet an autistic child for whom a normal sound is too loud for them, and they are blocking the ears. Others want sound that is too loud for them to be able to hear. Those are some of the manifestations of autism."

Nyachieo said the manifestation age for autism is around two years.

He said one can monitor a child from 18 months and see a deviation from the norm in terms of developmental milestones.

From 18 months, a parent can notice whether their child has a communication, behaviour or social interaction problem.

Nyachieo said although the exact causes of autism are not fully understood, genetic and environmental factors are believed to play a role.

"Changes in environmental factors, such as pollution, nutrition and exposure to toxins, could potentially be contributing to the increased prevalence of autism cases," he said.

Nyachieo said genetic predisposition influences the likelihood of developing autism.

While no single gene has been identified as the definitive cause of autism, numerous genes are believed to be associated with an increased risk.

Many of these genes are involved in brain development and the functioning of neurotransmitters, which are chemicals that facilitate communication between neurons in the brain.

Nyachieo said autism does not have a blanket kind of diagnosis. Every child has very unique individual presentation of the condition.

"But in general, you will see difficulty in social interactions. This individual may have trouble understanding social cues, making eye contact or engaging in typical back-and-forth conversations. Their social interaction aspect is really unique," he said.

Aautistic children tend to have repetitive behaviours. This includes repeating certain movements and actions.

Some have highly specific interests and insist on following certain routines.

"That is why people say an autistic person is very orderly. Change in behaviour and all that is really difficult for them," he said.

The major indicator of autism is communication challenges.

"A parent would say their child is not able to talk. Many of them will face this challenge with verbal and non-verbal communication. Some may have delayed speech development and difficulty in understanding spoken language," Nyachieo said.

"Then we have sensory sensitiveness. Individuals may be hypersensitive or hyposensitive to sound, light, touch. This can lead to overstimulation or discomfort in certain environments."

Additionally, autistic children have difficulty with change. People with autism always prefer routine and may become obnoxious or irritable when in unfamiliar situations or faced with unexpected changes.

MANAGING PATIENTS

Intervention for autism is a multidisciplinary approach. The most sought intervention is occupational therapy.

"Occupational therapy focuses on improving sensory processing, motor skills and daily living skills," Nyachieo said.

Occupational therapists work with individuals with autism to address sensory sensitivities, develop fine and gross motor skills and improve self-care abilities.

In occupational therapy, an evaluation is done on how the child learns, plays, cares for themselves and interacts with their environment.

He said a number of real-life everyday skills can be developed through occupational therapy.

Another intervention for autism is speech and language therapy. Speech-language therapy helps individuals with autism improve their communication skills, including speech, language and social communication.

He said therapists work on areas such as vocabulary development, understanding and using language and improving nonverbal communication skills.

Nyachieo said the child can also undergo social skills training.

"Social skills training programmes help individuals with autism learn and practise social skills, such as making eye contact, taking turns in conversation and understanding social cues," the medic said.

These programmes often use structured activities, role-playing and real-life scenarios to teach social skills.

Another intervention is through visual support and structured teachings. Visual support, such as visual schedules, picture cards and visual cues, can help individuals with ASD understand routines, transitions and expectations.

There is also parent training and support, where caregivers are provided with strategies and skills to support their child's development and manage challenging behaviours.

"These programmes often focus on behaviour management techniques, communication strategies and advocating for their child's needs," he said.

Nyachieo said autistic children can also undergo sensory integration therapy, which helps individuals regulate their sensory processing and respond appropriately to sensory input.

He said therapists use various sensory activities and exercises to help individuals tolerate and integrate sensory information more effectively.

In a school setting, there could be educational interventions by providing individualised education and support in school settings.

RISING CASES

Nyachieo said there has been an increase in autism cases in the country over the years. Initially, it used to go undiagnosed.

"But right now, there is a growing awareness of autism spectrum globally because of the campaigns and information. This means those who ordinarily could not be diagnosed are now being diagnosed," he said.

Standalone autism centres have mushroomed across the country. Most private hospitals are also building centres either for child development or a standalone unit for occupational therapy, whose clientele is mostly the autism spectrum.

In most schools now, there are around 20 children in need of additional support in learning, Nyachieo said.

"Also, being an occupational therapist myself, I know around 100 occupational therapists and around 30 special language therapists working within Nairobi alone," he said.

"They are privately seeing independent clients every day, and every doctor is seeing three to four kids, then the numbers are on the rise."

He said even more churches are coming up with support groups for parents with special needs children.

"Personally, I know like 10 to 15 social media support groups for children with autism," Nyachieo said.

"A WhatsApp group has an average of 200 to 250 people. So if we are talking of 10 to 20 groups, then that is 2,000-plus."

Though there is no documented research done in Kenya, there are a lot of indicators that there is a rise of autism cases in Kenya.

Nyachieo called for more discussion and research on autism in the country.

"Numbers do not lie; these are the silent but sad facts, autism is on the rise. And since the major cause is genetic, as the population grows, so will the cases of autism," he said.

Nyachieo attributed the increase over the years to the increased awareness and recognition of autism, making it more discoverable.

He said there has been extensive screening for autism.

"In 2006, the American Academy of Pediatrics recommended that all children between 18 and 24 months of age must be screened for autism during routine paediatrician visits," the medic said.

"Thus, more children are now being screened for autism than before, leading to diagnosis of those children who would otherwise have slipped under the radar."

In Kenya, with the emergence of neurodevelopmental paediatricians and other child development specialists, the screening has been enhanced and early screening and interventions measures by neonatal occupational therapists have scaled up early detection rate.

Nyachieo warned that there is a form of virtual autism that affects children below three years who stare at screens for more than four hours a day. He said these children have behaviours and elements similar to those diagnosed with autism.

Additionally, he said environmental factors, such as the increasing age of parents, increases the chances of autism in a child.

"Nowadays because people are still pursuing education and careers, we are seeing many give birth when older," the medic said. 

Also, some children born prematurely end up having autism once they survive.

"What nobody will tell you is that most of the babies who survive after a premature birth end up with different health complications," he said.

The medic said exposure to environmental toxins, such as pesticides, and consumption of certain drugs during pregnancy (antiepileptics and antidepressants) can also lead to autism in children.

There has also been a broadened criteria for diagnosis and improved diagnostic tools.

"The older version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-4) did not allow children to be diagnosed with both autism and attention-deficit hyperactivity disorder (ADHD)," he said.

"The DSM-5 version, which is more recent, allows for multiple diagnoses and we now use the term Autism Spectrum Disorder."

COVID-19 IMPACT

While there hasn't been a direct link established between Covid-19 and an increase in autism prevalence, Nyachieo said the pandemic had an indirect effect on individuals with autism.

The pandemic came with disruption in routine and services.

"Individuals with autism often rely on routine and structure, and disruptions to their routine can be challenging," he said.

The uncertainty, social isolation and changes brought about by the pandemic may have increased stress and anxiety levels among individuals with autism and their families.

Moreover, with the introduction of online learning, transitioning to remote learning formats may have presented additional challenges for students with autism, including difficulties with virtual communication, limited access to support services, and challenges with maintaining focus and attention in a non-traditional learning environment.

Further, the pandemic came with reduced access to healthcare. Some families may have faced difficulties accessing healthcare services, including diagnostic evaluations and therapy, during the pandemic.

Nyachieo said some of the measures, like wearing a mask, may be unformattable for those with autism due to their sensory sensitivities.

Having practised occupational therapy for more than 13 years, Nyachieo said more boys have autism than girls.

He said with early intervention, it is possible the child can achieve the highest level of functionality.

"We are not saying the child will achieve everything 100 per cent, but our aim as occupational therapists is to have the child be independent in terms of their work, daily skills and life," he said.

"I have seen quite a good number where we have intervened and discharged much more functional."

The medic said consistent intervention yields results. He said for instance, Murang'a county has some programmes for autism, and urged more counties to emulate it.