Autism Spectrum Disorder is a group of neurological conditions that usually manifests in early childhood. These conditions are usually characterised by abnormalities in communication skills as well as deficits in social interactions. Some parents who were able to spot the health disorder early and initiated therapy spoke on the benefits of early intervention. One of the parents also shared how three schools rejected their son with ASD out of ignorance. AMARACHI OKEH reports
When a paediatrician told Mrs. Joy Ibemere that her two-year-old son, Sinobichukwu was autistic, she went cold and numb. It was difficult for her to process. When she eventually got home from the hospital that day, she fainted while just thinking about the challenge she had to face to raise the child.
She knew about the autistic disorder vaguely and never imagined it is something that she would ever have to deal with until her son was diagnosed with mild autism. What was more puzzling to her was that her son never exhibited the typical signs she would later read of.
The mother of three recounting how she felt at the diagnosis said, “It hit me badly because I was afraid for him and his future. The stigma, the lack of knowledge of the condition in the country, and then coupled with the doctor’s report that he has to live with the condition for the rest of his life.
“But the doctor was quick to reassure me that with therapy, everything would be fine if we start therapy on time.”
In no time, the family employed a therapist whose effort the mother said is now paying off.
Before the diagnosis, Mrs. Ibemere said she felt something was wrong when her son would sometimes not respond when called but was excelling at every other developmental milestone.
At 18 months, her maternal intuition kicked in. She could no longer discard the signs she was seeing in her child.
She told Reportr Door HealthWise that “At 18 months, I noticed that sometimes you’d call him and he would not respond. I thought it was him being naughty at that time and this was a bit tricky because he hit all the developmental milestones on time.
“By then, he was already reciting his alphabet. He could recite his ABCs forward and backward. He could recite up to 50 so I was a bit confused.
“He could feed himself, and climb the stairs, but my issue was that he wasn’t responding to his name. I found it weird, I thought it was him being naughty.
“Once in a while, he would utter ‘mama.’ He’d just say it and move on but it wasn’t a recurring thing for him but he recognised me as his mum but he just wouldn’t respond to his name.
“I thought it was because he is a male child, he was trying to be stubborn. Then I decided that I would observe him till he turned two years old. At least by two years, he should be able to utter some words,” she said.
When at two years of age nothing changed, Mrs. Ibemere reached out to a paediatrician friend who first told her that her son may be autistic
“I said God forbid! By this time, I knew what autism was but I didn’t understand it.”
The friend then referred her to a specialist for observation.
That was when she learned her son had a mild case of autism disorder.
Swifty and on the recommendation of the paediatrician, the Ibemeres enrolled a therapist and within three months, the mother said she could see changes in her son.
But before employing a therapist, the mother admitted that she feared for the future of her son. She was afraid he wasn’t going to live a normal life like other kids but when the therapist was employed and she began to see good changes in the boy, she realised that she had nothing to worry about and that her son is brilliant.
She had wondered how he would be treated and how he would respond to treatment.
“I can see that he can do things for himself and he has even been enrolled in a school and he is doing amazingly well.
“This autism is like a blessing in disguise. He is reading and can add his numbers. He can write. Right now, I don’t have any fears about the future. I know he can take care of himself. He is normal. That someone’s perception of life is different doesn’t mean he is abnormal,” she said.
Worried when one-year-old son couldn’t speak
Another couple with a child with ASD who spoke with Reportr Door HealthWise was Mr. and Mrs. Kehinde Asishana. They were initially not alert to the condition until the child was about a year old.
It was when his sister, at seven months, began babbling ‘mama’ that Mr. and Mrs. Asishana knew something was wrong with their first child, Onovide, who is one year older than his sister but wasn’t speaking yet.
What was more puzzling for the mother, Mrs. Asishana was that her son’s birth mate at that same age could speak both Yoruba and English fluently. She then went to a private hospital to find out what the problem was.
“We went to a private hospital where we were assigned a paediatrician who assigned a therapist to us. He had a hearing assessment and was certified perfect, then another assessment was required.
“During this particular assessment, he was throwing tantrums, turning the lights off and on, unconsciously to me, I didn’t know that those are signs of a disorder.
“When they finished the assessment, the therapist told me that my son is autistic and this is affecting his speech although it is mild. He said my son had ASD level 2.”
The Ogun state indigene said she was shocked. She recalled that her son at that period was always hyperactive, climbing the windows in addition to throwing tantrums, but noted that she never read any meaning into it.
“The therapist said if I don’t work on it on time, he may not talk. That he needs a therapist that would be with him to engage him always,” Mrs. Asishana said.
She, however, noted that before the diagnosis, people had told her and her husband that something was different about their son, disclosing that she had always brushed the concerns off because he didn’t have any other visible markers or delays until two years when he couldn’t talk and didn’t even make any attempt at it.
The school thought my son was dumb
More saddening, Mrs. Asishana said, was that even the school she had enrolled the boy into knew something was different but never bothered to share their observation with the family.
“Even in his school, they assumed he was dumb. The funny thing is that we go for open days in the school and nobody cared to tell us what they had observed in the child.
“When the teacher asks questions in class, they never bother asking him or engaging him. They only let him write and that is all.
“We go for open days, meetings and not one person from his school said anything. He was rather segregated and this is a private school that is considered very expensive in the neighbourhood we live in.
“Assuming we didn’t engage a therapist that observed him in the school, we would have been ignorant of how he was treated in school.
“In fact, the school administration said he thought he was dumb until we started therapy and the therapist was with him 24/7 in class.
“It was the therapist we employed that made efforts to integrate the boy into the school activities before they noticed that he could talk. The problem was not that he cannot hear, he could hear but he had a problem expressing himself,” the mother said.
Also speaking with our correspondent, Mr. Asishana also stressed that it was disappointing that the school did not reach out to the family about what they observed about their son.
“I found that they are not knowledgeable about the disorder. I won’t blame them totally because they don’t know,” Mr. Asishana, who is a software engineer, said.
But even after the condition was detected, allowing the therapist into the school was another hurdle for the family to cross.
The mother of two narrated that because they didn’t understand the peculiarity of their son, it was a struggle to even allow the therapist into the class. The school didn’t want to hear of it and the class teachers were opposed to the idea.
After lots of back and forth with the school, he was eventually taken out, and finding a suitable school for him wasn’t as easy as just registering in a new school and paying the fees, he said.
Three schools rejected our son because of the disorder
Three different schools had rejected him due to his peculiarity and the fact that he needed his therapist nearby.
“I felt really bad and had to ask them, ‘what happens to other children who have it worse than this and don’t know?
“How do you make their parents aware and how would their parents feel?” Mrs. Asishana asked.
“Eventually, we found a Montessori school whose proprietress understood the disorder and agreed to the arrangement of having the boy’s therapist present in the class,” she said.
With the help of the therapist, the boy is gradually becoming responsive, expressive, and immersive in classes and at home but the family admits the financial implication is quite enormous.
“If we didn’t have the resources to engage the therapist, we would still have been where we were talking not to talk of going for any assessment at the hospital.
“Those tests and consultancy cost us some money. It is expensive and he had to be enrolled in a Montessori school just to ensure that he is adequately catered for.”
Despite the huge financial sacrifice, Mrs. Asishana said the investment is worth it as the family has discovered that their child’s learning curve is quite different from others.
What is Autism Spectrum Disorder?
Autism Spectrum Disorder, the World Health Organisation says, constitutes a diverse group of conditions related to the development of the brain.
The American Centre for Disease Control further explained that people with ASD often have problems with social communication and interaction, and have restricted or repetitive behaviours or interests. They may also have different ways of learning, moving, or paying attention.
According to the WHO, one in 100 children has autism and it is often not diagnosed until much later.
The abilities and needs of autistic people vary and can evolve. Some people with autism can live independently while others have severe disabilities that require life-long care and support, WHO noted.
A Consultant Paediatrician with speciality in Neurology, Dr. Ibrahim Ameen-Ikoyi explained that the basic problem in ASD is interaction.
ASD, she said, is a disorder without a physical marker, adding that children with ASD have communication problems and problems with socialising with other people.
This, she added, can also affect their speech development and make it difficult for them to develop language skills.
Children’s behavioural specialist, Jane Aghadiuno also explained that the awareness about autism in Nigeria is really low, adding that children with the condition often face discrimination and stigma.
She noted that due to ignorance about the condition in Nigeria, parents of children who exhibit signs of this disorder usually disregard the children or even stop their academic progression believing that the child cannot attain any form of development in life.
She explained that the autism spectrum affects the way the person affected perceives things.
Children with ASD, she said, see things differently and think differently from others, adding that these signs start manifesting between one to three years of age.
She said some of the red flags associated with the disorder include when a child does not keep eye contact, self-isolates, is averse to change in routines, fails to respond to their names, and has repetitive behaviours.
But these red flags could be quite tricky, Aghadiuno, who is the founder of Ms. J Tutorial Special Needs, said, noting that not every child who exhibits any of these signs could be on the spectrum.
Another child’s behavioural expert, Mr. William Ikonoh said autism spectrum disorder specifical affects either the behaviour, speech, social communication, or sensory aspect of the child on the spectrum.
He added that there are different levels of autism, noting that it ranges from the verbal to the non-verbal autism spectrum.
He also stated that there could be high-functioning or low-functioning persons with ASD.
Children with ASD could suffer other comorbidities
Paediatric neurologist, Ameen-Ikoyi also explained that some children with ASD also suffer from other comorbidities.
According to him, it is usually at the point of diagnosing another disorder that it is often found that a child could have ASD.
Some conditions that may be associated with ASD include Attention-deficit/hyperactivity disorder, cerebral palsy, Downs syndrome, etc.
Early intervention can help a child live normal life
Speaking with our correspondent, Ms. Aghadiuno said it is important to employ the services of a therapist early, especially between the ages of 0 -3.
“When your child clocks 5, 90 to 95% of the brain is already formed, meaning the child is already like you, and it will take a long process to change things,” she said.
While there is no timeline for when the intervention of a therapist may end, Aghadiuno explained that the condition is a lifelong journey.
She, however, noted that with the assistance of an expert, and the contribution of the family at an early age, the child with ASD can go on to live a successful and fulfilled adult life.
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