Aahil painting. PHOTO/JOAN SALMON
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Coming to terms with an autism diagnosis
What you need to know:
- Accommodative changes. Every autistic person is unique in their own way. However, there are classical signs of autism that can lead you to a diagnosis.
- After the diagnosis, there are several changes that must be made to accommodate the child
Autism, a lifetime condition and the narrative about it has to be transformed with a focus on contributions at home, work, in the arts and in policymaking because people with autism interface with these spheres and they affect them differently.
Autism spectrum disorder (ASD) is the clinical definition for autism and it is a developmental disability caused by differences in the brain. Claire Murungi Mbabali is a mother of a child who was diagnosed with ASD at three years.
READ:Facts about autism
At 18 months, the couple suspected that there was something wrong with their child because he delayed to hit his milestones especially speech and movement. The chewing movements were also not developed.
Autism varies from one person to another. According to centers for Disease Control and Prevention (CDC), the abilities of people with ASD vary significantly. For example, some people with ASD may have advanced conversation skills whereas others may be nonverbal. Some may need a lot of help in their daily lives while others can work and live with little to no support.
“Every autistic person is unique in their own way. However there are classical signs of Autism that lead you to a diagnosis,” Mbabali says.
How do you know?
Signs of ASD are varied but can be grouped into three categories according to Julius Oyeyo, an occupational therapist at Tunaweza Children’s Home:
Difficulty with communication and interaction with other people. A child with autism avoids or does not keep eye contact, does not respond to their name by nine months, does not play simple interactive games by 12 months of age, does not share interests with others by 15 months.
Restricted interests and repetitive behaviours. For example, the child lines up toys or other objects and gets upset when order is changed, repeats words or phrases over and over (called echolalia), plays with toys the same way every time, gets upset by minor changes, has obsessive interests, and must follow certain routines.
Some symptoms like delay in speech, movement, and cognitive or learning skills, hyperactive, impulsive, and/or inattentive behavior, epilepsy or seizure disorder, and unusual eating and sleeping habits as well as mood or emotional reactions, anxiety, stress, or excessive worry, and a lack of fear or more fear than expected affect their ability to function in school, work, and other areas of life.
Like many parents, coping with an autism diagnosis was hard for the Mbabalis. “We went through denial, first we thought it might just be delayed milestones. Some relatives gave examples of people known to us who apparently spoke after four years,” she recalls.
Claire Murungi Mbabali, mother to a child who was diagnosed with ASD.
They lept on the false hope that it was just a delay but it was not. They hoped to different prayer centres in until they accepted that their son needed help.
“We finally accepted the condition, sought help and got him into therapy,” she says. This acceptance was followed by several changes to accommodate the needs of their baby.
Changes
Mbabali says every child on the spectrum has different needs and in their case, there was a lot of adjustment to make. “It was akin to a 360 degree change because this happened daily. Therefore, consistent and collaborated therapy helped a great deal, and we followed through everything that the therapists recommended,” she says.
His diet also changed drastically where there was no gluten, no artificial sugars, and no dairy products for four years “Dietary restrictions have sometimes been associated to helping children who are very hyperactive and have sleep disturbances,” Mbabali says.
ALSO READ: Music therapy for autistic children
The Murungis also talked to family and friends about his condition and needs and they have been great support. “You need a support system to help you go through the tough times, and to hold your hand when you cannot hold it up any longer. It could be with getting a grip on the new diets, or having someone to talk to when feeling down, which happened a lot in the start,” she says.
Challenges
While they struggled to find what exactly was wrong with their child, it took the couple some time to take it in the results of the diagnosis. “As if that is not enough, society is not fair either with the many questions and quizzing eyes,” she says.
Mbabali says parents of children with autism struggle to have their children understood and accepted in society. “Many a time, people will refer to your child as one with kyejo (brat) because they are still eating mashed food at three years or is going through a meltdown at a gathering. There were countless times my son was locked out of neighbours' houses because he was deemed ‘destructive’,” she says .
Cost of therapy
Therapy is necessary for most children with ASD to cope and appreciate their environment better. “However, it is very expensive. My son saw five therapists a day which cost us millions per quarter but we could not afford a one off. Therefore, we got a therapy centre where we could pay on a monthly basis,” she says.
Aahil at home painting. This is one of his favourite activities. PHOTOs/JOAN SALMON
Finding an all-encompassing school comes at a high cost because finding therapy centres and inclusive schools is very hard. For about four years, their son attended therapy at Tunaweza Children’s Centre.
“Our son went through occupational therapy, special needs education, speech and language therapy, music and aqua therapy, consistently from Monday to Friday. Whatever they recommended at school, we did back home however tough it was. It got easier with time,” she says.
He was weaned off therapy and is now in an inclusive school. His parents are happy to see him thrive in his own way.
The disorder also comes with dietary restrictions which also comes at a cost. “Substituting dairy with almond milk or soy milk and the like can be hard on the pocket,” she remarks.
Advice to other parents
Mrs Mbabali urges parents of children having special needs to accept them, seek help that caters for the needs of your child. “The earlier the better. Pray, and identify your support system because it is harder doing it alone. It gets easier with time,” she says.
She also advises parents to expose their children to everything that can help. If they can swim, play an instrument, draw, sketch, and paint, Mrs Mbabali remarks, they will eventually show you the direction of their strength. “You cannot figure out who they are if you hide them, isolate or delay therapy,” she says.
Prejudice
Society is not fair. They look at such children with many questions and quizzing eyes. Many of them refer to such children as brats becasue they eat mashed food or go through a meltdown at a gathering. They are always deemed destructive.
