Early signs of autism every parent should watch closely

 Stigma, discrimination, and pity pushed Karen Muriuki to rise above adversity and become an advocate for the inclusion of autistic children in the society.Now a champion for persons with autism and other disabilities, the 45-year-old Nairobi resident dedicates her life to sensitising communities and challenging long-held misconceptions.But her autistic journey has not been easy.

 Diagnosed with autism at the age of three in 1985, Muriuki, who is a neurodiversity consultant at Ubongo International and organising secretary at Differently Talented Society of Kenya, says her early years were marked by confusion, stigma and cruelty.

 Before the diagnosis, she struggled with delayed speech and social interaction.

 “In the 1980s and 1990s, nobody really understood what autism was. It was often associated with a bad omen or a curse and viewed as a mental illness,” she tells The Standard on Saturday.

 Occupational therapy

 A doctor recommended that she be enrolled in a  ‘slow learners’ school’ and undergo occupational therapy.But the suggestion left her traumatised.Instead, her parents enrolled her in a normal school, a decision that came with its own challenges.

 “I was bullied so much by my peers. They didn’t want to play with me, and I struggled to cope. Whenever I made a mistake, teachers would punish me harshly, as we still had corporal punishment. The world felt so cruel,” she recalls.

 At the time, schools lacked the capacity and awareness to provide reasonable accommodation for children with autism and other disabilities, further compounding her struggles.

 She enrolled to Information Technology (course, and later joined Strathmore University, where she explored neurodivergence, venturing into coding, and gained skills in design and communication.

 Her lived experience inspired her to step into advocacy, where she now works to empower others and educate society about autism and disability inclusion.

 Muriuki is a disability inclusion advocate and an alumna of the International Disability Alliance Bridge Fellowship, as well as a certified disability inclusion facilitator with Light for the World.

 Through programmes run by Light for the World, she mentors emerging autistic advocates, supports micro-entrepreneurs, and helps parents better understand autism.

 Promote inclusion

 “Parents should accept their autistic children.  They are not disordered or diseased. Do not pathologise your child or turn them into an object of pity,” she advises.The programmes also offer awareness training in both public and private institutions to promote inclusion.Despite her achievements, Muriuki continues to face barriers, including stigma, discrimination, and lack of recognition.

 “Being perceived as a child just because I am autistic is deeply hurtful. People assume atistic people are of unsound mind, which is not true,” she says.Muriuki calls for a shift in how society views autism.“We should see autism as part of human diversity, not as a disease or illness. It should not be approached purely from a medical perspective,” she adds.

 Muriuki’s story reflects the broader challenges faced by people living with the condition as the World Autism Day was marked on Thursday, and the awareness month started.

 Florence Oringe, a developmental paediatrician, explains that autism is a disorder that affects children when they are still very young.It is a lifetime condition, that presents with difficulties in social skills, difficulties in communication and tend to have repetitive behaviours.

 In real life, she says children presents with speech delay that can come in different forms, for example failure to attain language, not able to engage in a conversation, have limited words and may not be able to use common non-verbal communication like ‘bye’.

For social skills, autistic children may not respond, for instance when called or smile back.The children are also loners, where they want to be on their own, doing their own things.

 “On repetitive behaviours, commonest we see is children playing with their own bodies, you will see movements that are unusual either spin around, they clap, they jump, they climb and some grind their teeth,” says Dr Oringe.

 Restricted interests

 She adds, “At times, we see unusual verbal behaviour for instance shouting, laughing on their own, or just repeating same statements like echoing what someone has said.’’Some children according to the specialist have restricted interests for example interest in only aeroplanes, numbers and same toys over and over.

 Oringe explains that for a child to be diagnosed with autism, three criteria must be met, namely social skills deficit, the difficulties in communication both verbal and non-verbal communication, and some signs of repetitive and restrictive behaviours. Caregivers she says are key in managing autistic children. For instance if they have limited speech, caregiver must engage and speak to the child.Oringe adds that autistic children have sleep disorders, and seizures that is managed with medication.

 Sometimes they have psychiatric issues like anxiety and depression.At least 60 per cent of interventions are with caregiver.

 Alongside caregiver’s role, a speech therapist is engaged to support the child to form speech.

 Occupational therapists also work with children through play to develop speech, improving their communication skills, their attention level and tying to improve sensory processing difficulties that is common in autism. Therapists are encouraged to help manage children with difficult behaviours.

 Though with limited documentation within Kenya’s data system, Oringe says autism has become so common, with majority diagnosed at late stages.

 In the US.at least one in 31 children is autistic. Globally, according to World Health Organisation the rate of autism is one in 100, but the rates are higher in Kenya and Africa, says Oringe.

 “In 10 years ago, doctors used to see one case a month, but currently, everyday, more than 15 children are seen. Prevalence of autism is going up,” says the neurodevelopmental paediatrician. Studies done shows more than 60 per cent of autistic cases are genetic, while environmental and biological factors also trigger autism.

 “Genetics is the biggest cause of autism. A child born in a family that has say two or three autistic children risks inheriting the gene,” explains Oringe.Autism she says is most common in boys.Parents who give birth at an advanced age, also risk having autistic children.

 Other factors that risk autism include multiple pregnancies, preterm birth, children who delivered through artificial methods like vitro fertilisation.

Environmental factors that trigger autism include air polluted with toxins, and children playing on farms with pesticides and herbicides especially if they have chronic exposure.

 Uterine infections during pregnancy, such as syphilis and certain viral infections, may increase the risk of a child developing autism. 

Mothers consuming alcohol in pregnancy, smoking, and maternal problems like diabetes, hypertension and malnutrition also risk giving birth to an autistic child.

 Scientists at the Kenya Medical Research Institute-Wellcome Trust Research Programme are conducting studies including NeuroDev and SPARK —to deepen understanding of neurodevelopmental conditions like autism while directly supporting families.

 The research brings together clinicians, psychologists and community health promoters to conduct detailed assessments on how children learn, communicate and interact.

 Under SPARK, families also contribute to a global autism research network, helping shape future interventions.

 However, there are so many myths around autism which Oringe attributes to lack of knowledge.

 “Autism is not caused by vaccination. Myths surrounds vaccination because the first diagnosis of autism tends to happens at 18 months, and coincidentally, that is the time when measles, mumps and rubella vaccines are also given,” explains the child specialist.

 A section of individuals also believe excessive use of screen time causes autism, a myths debunked by specialist, who, however, maintains children exposed to TV screens will delay on speech because they have no time to play- “they struggle with attention because they are used to first movement of cartoons and stop focusing with what they should not, with such, they tend to present with autism traits.’’

 For children aged five to 10 years, specialists recommend less than two hour screen time.

 “If a child was developing autism, and they are exposed to more screens, their situation will worsen. We usually ask parents to minimise screen time for children.

 ‘‘No more than one hour screen time for any child. And it should be educational programme, with adult supervision”, she advises.

 There are three levels of autism spectrum disorder.

At level one, a child meets most of their developmental milestones, including socialisation, language, while their thinking and reasoning are normal. Such children grow up to adulthood, get into careers and marry.

 Children at level two lack functional skills, may struggle with repetitive behaviours and need substantial support to function.

 Those at level three have very low convictions whereby their thinking and reasoning is low, are non-verbal, have a lot of restrictive and repetitive behaviour, making them not be independent. They therefore need substantial support thought their life.

 With early diagnosis, the levels can be improved, says Oringe.Diagnosis she however says is done late mostly at eight years, because of lack of specialists and knowledge gap among healthcare providers.

 For instance, there are only three neurodevelopmental paediatricians in Kenya, with limited paediatricians, mostly based in cities, more so Nairobi, making it hard to diagnose children.Oringe notes different ways of managing autism namely occupational, speech therapist, and applied behaviour.

 To help the children, she encourages integrated in normal schools, to help them acquire social and communication skills.

 Oringe discourages use of complimentary treatment and micronutrients, saying they risk damaging a child’s liver and kidneys because of their toxicity combination.

 The Standard on Saturday met a team of young volunteers from Jomo Kenyatta University of Agriculture and Technology where they are creating awareness on autism.

 The students, pursuing degrees in occupational therapy. Through screening, caregiver guidance and community support, they are helping bridge gaps in autism care.

 Team leader and Rotaract member Kelsey Wangui says early identification of developmental challenges is key to ensuring children receive the right support.