Featured photo: The Obutu Family. Credits: Facebook.
April 2, is World Autism Awareness Day. This family shares with us their journey raising an Autistic child. From the story, we learn that more needs to be done in terms of awareness, research and interventions. We also learn that people with Autism are specially gifted, from Ryan’s story.
When Ryan speaks, one had better be listening. You might get lost along the way from his many stories, but if you pay attention, you will always learn a thing or two. Today out of the blue, we are suddenly talking of the Westgate terror attack. The conversation could have been triggered by the story on CNN about the Brussels subway bombing.
I adjust myself and listen to this young man who has a photographic memory, “Westgate was attacked on September 20th, 2013”, he tells me. “It was reopened on 18th July 2015”, he adds. He actually has the memory of a calculator. Tell him which year you were born, he will tell you how old you are instantly.
Ryan is among the many Autistic people in the country. He is 21, and in college, studying to be a chef. “I aim to work in Villa Rosa Kenpinski”, he discloses with a wide smile.
Agnes Marete Obutu, his mother, could not understand why her first born son had delayed milestones. “At the age of 3, he had not spoken, could not maintain eye contact, had not potty trained and was very hyper active”, she says. All these signs did not raise an alarm because Ryan was a normal child at birth. “He scored 9/10 on the Agpar score after birth”, she explains.
Autism is a pervasive developmental disorder that involves abnormal development and function of the brain. People with autism show decreased social communication skills and restricted or repetitive patterns of behaviors or interests.
There are autistic people who are near normal, those with Asperger’s syndrome. Asperger syndrome is mostly a ‘hidden disability’. This means that you can’t tell that someone has the condition from their outward appearance. “Autism can be qualified into three: Asperger, mild and severe autism”, Agnes tells me. “It is a spectrum disorder, meaning that not every autistic person behaves the same”, she adds.
ASD, meaning Autism Spectrum Disorder, refers to a disorder with a widely varying range of severity. All people within this spectrum, however, have varying degrees of difficulty in three main areas: social communication, social interaction and social imagination. While behaviors associated with severe autism are typically superficially evident, those on the lower end of the spectrum do not necessarily have immediately identifiable symptoms. The latter may find life even more difficult, with their symptomatic behaviors misunderstood as bad behavior or aloofness.
Remember Susan Boyle the singer on Britain’s Got Talent? Albert Einstein? They have one thing in common Asperger syndrome. Word has it that the 3rd President of the United States, Thomas Jefferson, the writer of the Declaration of Independence could have been autistic.
Most Autistic children look normal as Agnes reveals. “It is a special Education Professional who pointed the possibility of Ryan being a child with special needs”, she says. This was when Ryan was almost four years old. ”
The Obutus were open minded and took their son for assessment. “The psychologist assessing him told me that there was a likelihood my son would never talk”, she says reflectively. “I developed a fighting spirit, and asked God for one favor”, she says. “That Ryan would call me mum”, she reveals.
They started the long journey of interventions. Physiotherapy, Speech therapy and pediatric appointments. “We had our challenges even with our determination”, she tells me. They could not get the recommended school which were Montessori schools. “Most of the schools refused to take him in saying he was too hyperactive”, she recounts.
They finally secured a chance at Buruburu Church of God primary school, where the headmistress accepted to have Ryan, despite it not being a special school.
Another challenge is that no house-help wanted to stay with their family. “They thought that Ryan’s behavior was due to lack of discipline”, she says. They however maintained a protective policy over Ryan in their family. “If somebody did not accept my child, then they did not accept me”, she says. Eventually, they got a house manager who understood Ryan. “Muthoni was very good with kids”, she reminisces smiling.
“There is no way I could lock my child in the house and go visiting someone”, she adds. “The world treats your child the way you do”, she explains.
She also experienced challenges as a career woman, a mother and a wife. She was at the time a teacher in Huruma Girls’ High School. “I had to balance between my work, family and Ryan’s need for extra attention”, she recounts. She even once booked herself into Amani Counseling Center. “After three sessions, I asked myself, ‘Can man fix me more than God can?’ I then developed a closer relationship with God”, she reveals.
Relatives on the other hand thought that their son had been bewitched. The indiscipline blanket judgement was also resurfacing from these quarters. “They said these things before understanding Ryan’s difference”, she explains. “Once they understood he was Autistic, they were very supportive and protective of him”, she says.
Ryan is 21, and his younger brother Nicky, is 18. “Have you brushed your teeth?” Nicky asks Ryan. “Come sit at the dining table”, again he motions to Ryan at breakfast.
“Nicky has been Ryan’s closest friend”, Agnes tells me. “He missed a lot of opportunities growing up, just to help his brother fit in”, she says. “All the while when Ryan was being rejected in schools, Nicky had to change schools with him”, she adds.
What advice does she have to parents of autistic children? “No one signs up for a child with special needs”, she says. “If God blesses you with such a child, do not deny your place, don’t look at your child as a disgrace and find time for your child”, she advises.
“Ryan is the nearest to a perfect human being I have ever come”, she says. She tells me that though he sometimes obsesses over things and routines, he is a genuine, outgoing person that is very hard to dismiss.
When his meal times reach, he doesn’t bother anyone. He simply gets to the fridge, serves himself and warms his food. This is despite the meal that is being prepared. He asks me, “Juliet, do you want to eat now?” He is not selfish, he just has to stick to his routine. After our meal, he makes sure to serve me the fruit salad.
“There was this day when his uncle wanted to read the newspaper in the morning. Ryan could not understand why his newspaper reading schedule was being interrupted”, Agnes says laughing.
Agnes says that the government should invest more on research on Autism, education and training of autistic children and intervention mechanisms.
“Actually, autism awareness should top the list of priorities”, she states. She then recounts two horrible incidences that she remembers. “The first one is when Ryan was in class two”, she recounts. “The teacher incited other children to call him a Mwenda Wazimu”- Swahili for mad person. “The second was two years ago, when he arrived home with a bleeding lip. A conductor had beat him up for having paid less fare”, she recounts. “He must have thought Ryan was drunk”, she rationalizes.
Agnes Obutu’s desire is to one day be an Autism ambassador together with her son. She desires to raise awareness on this condition that even she confesses that she has not fully understood for the last 17 years.
“The rural Autistic child suffers a lot due to behavioral attributes that could even put them at danger to self”, she says. She desires that one day she will be part of a committee developing a framework for managing Autism in Kenya.