Autism Spectrum Disorder is a neurological disorder that impacts an individual’s social and communication skills. It is characterised by repetitive behaviour, restricted interests and non-verbal communication. Autism covers a range of spectra, as Dr. Loretta Burns, an expert in the field of neurodevelopmental disorders and CEO of ABE International Clinic and Consultancy, explains, “It was originally categorised into three parts, Autism (high functioning and low functioning), Aspergers and Pervasive Developmental Disabilities (PDD). These disorders share many similarities in symptoms, [but] differ in severity and impact for each individual. However, in 2013 The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders redefined autism, by merging Autistic Disorder, Asperger’s Disorder and PDD by the diagnosis of Autism Spectrum Disorder (ASD).
– NNEOMA EKWEGH
According to WHO, one in 160 children have ASD worldwide. In Nigeria there is no official statistical data on the number of children with ASD, but Dr. Burns estimates that thousands of children with ASD are born in Nigeria annually. According to a 2019 report presented by a group of Nigerian researchers, a main challenge for children with ASD is late diagnosis, because parents present their children for clinical diagnosis at very late stages. The fallout is that children then go through a traumatic childhood where they are mistreated, misunderstood or written off.
Remi Olutimayin, reminiscing on own experiences as an autistic child, said “I was born in the late seventies; [the concept of] autism did not exist in the seventies [or] eighties, in Nigeria. You were either slow or something was wrong with you; people did not understand. If you demonstrated a few signs [of ASD], you were on a downhill slope to being condemned. My first primary school teacher was mean to me. I think I just gave her a vibe she didn’t like. My mother [realised] something was wrong when I began to return home with my uniform smelling of urine. The reason for this was because, I think my teacher just did not believe anyone needed to go to the toilet as often as I did. So I remember the moment I decided it was better to just pee on myself than talk to this person again. So that was what I did, not once, not twice, but often.”
According to Dr. Burns, in raising awareness, certain misconceptions about autism are put to rest, and when family members and caregivers have a level of awareness, it will impact the child’s development.
Beliefs and Misconceptions
One widespread belief is that autism can be cured, even though there is no scientific backing to this. In 2019, two mothers of autistic children in the US went public when they discovered several private Facebook groups of parents who shared and discussed dubious and dangerous methods used to reverse their children’s autism diagnoses. Parents were crediting urine as the secret miracle drug to reversing autism. Others talked about giving their children Chlorine dioxide (a potent industrial bleach) orally or as an enema to cure them. In truth, when research on autism began, scientists focused on finding a cure, but over the years research focus shifted towards finding ways for people woth autistism to live healthier, happier lives, and understanding what can be done to help them. Thomas Frazier, Chief Officer of Autism Speaks, the largest autism advocacy organisation in the United States, said in a speech, “In the beginning, researchers were looking more for the magic bullet, the magic pill. We were looking for the autism gene, and we thought that would ultimately lead to some kind of cure for autism. Then we recognised that we were way off base.”
Apart from the belief in a cure, Dr. Burns says there are other beliefs about autism that continue to be touted without any medical validation, she said, “There is the belief that autism is unmanageable and individuals cannot flourish within societal norms; that autism is caused by environmental factors, and that individuals may grow out of autism over time.”
For Jebose Molokwu, whose son is on the autism spectrum, there was no time to dwell on mythical beliefs or misconceptions. Upon learning of his son’s diagnosis he got busy gathering information to better understand autism, a stance he says all parents must take. “Autism is not madness. It is not an ‘Ogbanje’ or ‘Abiku’ child; it is not an ‘evil spirit’ child. Parents and family members should focus on understanding Autism in order to support the child.”
However, even on the path to understanding, there are challenges that parents and their autistic children face.
Parenting the Spectrum
Children with ASD experience the world differently from most people, and this causes a feeling of wariness and unsafety for them. For Remi the feeling of unsafety made him wear a figurative mask just to fit in and not raise suspicion. “I kept getting rejected as a kid, so I learnt to make a mask for myself when I was out, so I wouldn’t raise suspicions. I would gauge what was acceptable to say, as part of a certain group and I would say that. I would tell them a truth that would make me fit in, but not my own truth because there was no need.”
Recent research conducted revealed that some parents felt overwhelmed, confused, angry or depressed by the day-to-day demands of being a parent to a child with ASD. According to Dr. Burns, having a diverse range of emotions is common for parents, “When a child is initially diagnosed with autism, family members/parents typically experience a range of emotions. These feelings often include fear, grief, denial, anger, guilt, and confusion. These feelings can cause diverse interactions when parents/family members first contact us. We focus on reducing as much of these feelings and anxieties through counseling, training and parent workshops. Building a positive rapport and support system is essential for the progressive work ahead.”
Elora Atim, a mother whose son was diagnosed with ASD, admitted she felt defeated upon his diagnosis. “I went into depression. This is my only male child. Finally I surrendered to God, and now I am loving my son so much.”
Reflecting on his experience with his mother, Remi said, “My mum fought hard for me, a mother whose confidence in her child’s worth is proved even when everybody is saying the child isn’t [worthy]. I could see the times I would slip up a few times in a row and my mum would be like, So you are going to start proving them right abi?” For Jebose Molokwu, learning of his son’s autism diagnosis caused frustration because he heard it through his lawyer during separation proceedings from his wife. “I was frustrated because I learnt from my lawyer that my son has autism. It is a privilege to be the father of an autistic son. I remain grateful for being [my son’s father]. He has made significant progress since his diagnosis.”
Autism Management: Early Detection and Intervention
Countless research has shown that early detection and intervention helps the autistic child immensely and studies have shown that ASD can be detected in a child as early as 18 months. With early detection there is a better chance of stopping problematic behaviour from becoming habits as they grow. Dr. Burns stresses that early intervention is key, “It is better to provide interventions sooner than later for faster progress and growth for each individual. Statistics and my research have proven that seeking assistance sooner makes a life-time difference.” However, in order to gain the advantage of early intervention, parents need to be attentive to certain behavioral traits and signs in their children. “Parents should be aware of their children’s alertness and overall spatial awareness from the youngest age. In other words, how does your child receive attention, make eye contact, smile, show emotion? Often, children begin to fall behind their peers in meeting certain benchmarks.” Jebose Molokwu agrees that there are always clear giveaway signs, he recalls of his son, “He was slow in learning, unable to make steady eye contact and verbally shy with regards to engaging in conversation or interaction. He had difficulties in social interactions and nonverbal communication, repetitive patterns of behaviour. He was also very shy and reserved.” Remi who realised he was on the spectrum in his twenties, agrees that parents need to get a diagnosis as early as possible. “I think as a child of the seventies and eighties, I did pretty okay without the diagnosis considering the time but early detection will save everybody a lot of heartache, misunderstanding and premature judgement. It will actually save time and help parents focus their energy on raising the child.”
Autism in Nigeria:
In Nigeria there continues to be a growing number of private medical entities that specialise in caring for and supporting autistic children and their parents and right now the conversation about autism is gaining momentum. Just like mental health, which was once a taboo for public discussion, autism has come out of the proverbial shadows, and Remi is very grateful for this, “The way autism has been communicated is the reason why people have such a negative disposition to it. Nigeria has missed out because people who are on the spectrum, who are on the cutting edge are overlooked in favor of what is considered normal”.
Featured image from Unsplash.