My autistic son turned my parenting game upside down
By Milliam.Murigi, April 26, 2023When Jane Ndegwa found out that her third baby was going to be a boy, she was excited. She had a boy and a girl already and was curious how having another boy in the family was going to be.
Once the boy, Aaron Muiruri Ndegwa, was born, he became everyone’s favourite. The first two years were enjoyable. Aaron was a happy and healthy baby. At two years, he could walk, but he was not bubbly. At two and a half years, he was still completely non-verbal. However, he loved to watch cartoons. Because of this, the family thought he was just having a delayed milestone and would talk eventually.
“I realised all was not well when he started to be extremely hyperactive and couldn’t make eye contact. This prompted us to see a paediatrician. After several tests, that is when he was diagnosed with Autism Spectrum Disorder (ASD) and Attention-Deficit/Hyperactivity Disorder (ADHD). Then he was three years.”
ASD according to Lincoln Kamau, Director of Research and Clinical Programmes at Autism Lights (Boston and Nairobi) is a disorder of neurobiological origin characterised by impairments in social interaction, communication, and repetitive and stereotyped interests or behaviour.
Big blow
Autism typically appears before the age of three years, but varies in the severity of symptoms, age of onset, and the presence of various features, such as mental disability and specific language delays.
Since Jane’s family knew nothing about the condition they thought it was just a condition that would go with time. However, after research and joining several support groups, they realised that it is a lifelong condition.
The revelation was a big blow to Jane and it took a toll on her mental health. She went into severe depression for one year. However, to her husband Stephen Ndegwa, the news was more of a concern than a shock. He immediately became more preoccupied with finding solutions rather than processing the diagnosis. He read everything he could lay his hands on that shed light on autism.
“Depression made the work of parenting feel impossible. I was in denial. I always wondered, why me. I had feelings of guilt and inadequacy. However, my husband was always there for me, he was my biggest support system,” she shares.
Accepting that her son was autistic and needed her love more was the first step in her healing process. Not seeing all the negatives, but the positives made the journey even shorter.
Early intervention helps
“I also started reading a lot about this condition to ensure that I know how to handle him. I even started talking to and supporting other parents who were in denial because of having autistic children,” she says.
After getting back on her feet, she realised that there was no progress in her son’s life despite starting the interventions. She decided to take him to school at the age of five years. Though this seemed to work at first, it didn’t last long. At eight years, he started getting severe anxiety and they had to withdraw him from school and start homeschooling, something that they did until Covid-19 hit the country. The family decided to let him take a break from classwork, but continued with other interventions more so, occupational therapy. Little did they know that the break would lead to language regression as well as in other areas. Today Aaron is 13 years old. Though he has hit several milestones such as eye contact and he is now not hyperactive often, he is still not able to talk.
“It has not been an easy journey. Parenting a child with autism is not only challenging, but also exhausting. But because of intensive therapy both occupational and speech therapy, diet watch, and supplements, we have seen good progress. The good thing with autism is early intervention helps a lot,” she reveals.
Autism like most other developmental disorders is quite common nowadays. In fact, according to the most recent global count study published last year (2022), about 1 in 100 children in the world have a diagnosis of autism, which was an increase from 2012 when the global prevalence was much lower.
This increase in the rates of children diagnosed with autism may sound alarming, but on the other hand, Kamau says that the study highlight is a reflection of how countries all over the world including here in Africa have raised awareness of the diagnosis and treatment of autism.
“Diagnosing ASD can be difficult because there is no medical test, such as a blood test, to diagnose the disorder. Doctors look at the child’s developmental history and behaviour to make a diagnosis. Luckily, most healthcare centres in Kenya can provide parents with a milestones assessment and flag out any real concerns. Some pediatricians and family doctors are also trained to conduct formal diagnosis,” says Kamau.
He says obtaining a diagnosis is the first step to accessing services and support for both the person with autism and their family. Delays in receiving a diagnosis can lead to low levels of parental satisfaction and can hinder the implementation of effective support or intervention strategies.
“Due to the lack of expert opinion on autism some families, and service providers may turn to pseudoscientific treatments that often include the involvement of religious and traditional healers, “medical tourism packages,” and other non-evident therapies some of which are harmful,” adds Kamau.
Jane says one of the low moments she experienced was when Aaron used to smear his faeces on the walls. She used to get so disheartened over the mess, smell, and clean-up. However, after learning that smearing faeces is normal for both autistic and neurotypical children of a certain age and there are ways to stop this behaviour, she started paying attention to what triggers the behaviour and what types of events that lead up to an episode.
“Since this was a sensory issue, occupational therapy has helped. We also tried several activities such as colouring, and moulding, among others to know which one satisfied his sensory needs. Thank God we realised that plasticine for moulding works for him,” she says.