Autism Mom Advocating For Inclusion and Acceptance
Maria Muinde, 28, is a research assistant and an autism activist on and off social media after her 3-year-old son Shane was diagnosed with the condition over a year ago.
Her pregnancy was smooth, working up to 2 weeks before birth where the umbilical cord wrapped around Shane’s neck, restricting oxygen and placing him on oxygen support for twelve hours.
He later blossomed achieving his growth milestones on time; seating at 6 months, 8 teeth by his first birthday and could say ‘mama nyonyo’ at 16 months.
Yet at 18 months, he began lining up his toys in a straight line and stacking up her spices.
“My mother and a friend also noted that he hardly responded to his name and kept eye contact to a bare minimum. I wasn’t alarmed, he had achieved all his milestones on time,” says Maria.
However, when Shane was a year and ten months old, she got her first job employing a nanny after being his sole caregiver since birth.
A month later, she discovered he was being abused and coupled with separation anxiety, no longer the cheerful boy.
“He no longer responded to his name or followed simple instructions. He regressed on potty training and the biggest blow for us was losing his speech,” she explains.
The first doctor she consulted recommended daycare, that interacting with other children would help him regain his speech. After some time, the daycare advised her to see the school doctor check if Shane was partially deaf.
“When the doctor diagnosed Shane with mild autism, my partner Tony and I were shocked. As a result, we sought a second opinion where a paediatric psychiatrist confirmed the diagnosis but also added Attention-Deficit Hyperactivity Disorder (ADHD),” says Maria.
Autism Spectrum Disorder refers to a range of conditions characterized by some degree of impaired social behaviour, communication and language, and a narrow range of interests and activities that are both unique to the individual and carried out repetitively (World Health Organization).
With no known cause, the disorder begins in childhood and affects 1 in 160 children worldwide lasting a lifetime (WHO).
While ADHD is a brain disorder marked by an ongoing pattern of inattention and/or hyperactivity-impulsivity that interferes with functioning or development.
Dr. Walter Otieno, paeditrician at Jaramogi Oginga Odinga Teaching and Referral Hospital (JOOTRH) has treated several autistic children and cites a lack of proper diagnosis as a barrier to treatment.
“If a physician has never encountered autism, they often end up misdiagnosing the child. There are also the societal myths of ‘madness’ which end up isolating the child,” he explains.
To recognize if a child or adult exhibits symptoms of autism, Dr. Otieno suggests looking out for rigid and repetitive behaviour.
“I have an autistic adult patient who carries his secondary mathematics textbooks to work, calculating the sums each day. He is adamant on this and gets upset if someone tries to stop him,” he says.
Tough as it was to accept, Shane’s parents moved on and focused on the necessary changes to manage his condition.
Too young to be prescribed medication, they changed his diet and enrolled him for weekly occupational and speech therapy.
“We dropped processed sugar and wheat and limit his milk intake. Sugar aggravates his ADHD, making him restless while wheat and milk contain gluten and casein which affects autistic people,” says Maria.
Other than his special diet, they are digging deep to pay for his therapy sessions, while saving up for the special school he will attend.
“Despite the fact that I pay for NHIF, it doesn’t cover his therapy. Kenyatta National hospital charges Ksh. 600/= with other institutions charging Ksh.3000/= upwards,” she says.
Her school of choice charges Ksh. 150,000/= per term, far beyond their means, they have since settled on a more affordable school at Ksh.30, 000/= per term.
Despite the highs and lows, she has experienced, Maria now has a nanny who loves Shane and a strong support system that includes her partner, family, and friends.
“How you treat your autistic child, will determine how others will treat them. You are their first line of defense, never be afraid to speak up for them!”
You can follow Maria and Shane’s Journey on her social media handles
Facebook: Maria Muinde
Instagram : @lovepersonified_autismmum.ke