- People with ASD often have problems with social communication and interaction.
- Caring for them needs patience and understanding.
- The community needs sensitization to understand the condition and its misconceptions.
April is World Autism Month, with the conversation being around raising awareness about autistic individuals globally.
While the cause of the disorder remains unknown, increasing general awareness can lead to earlier diagnoses, more effective interventions and improved access to services and support for individuals affected by Autism Spectrum Disorder (ASD).
According to World Health Organization, Globally, one out of 100 children and out of 160 adults has ASD.
The Centers for Disease Control and Prevention points out that “ASD is a developmental disability caused by differences in the brain. People with ASD often have problems with social communication and interaction, and restricted or repetitive behaviors or interests. People with ASD may also have different ways of learning, moving, or paying attention.”
Mercy Mmbone is a radio presenter at Milele FM, which points more to her eloquence and full-blown confidence.
She’s passionate about children with disability and runs Almasi Guardians.
This organization creates awareness in society and empowers parents taking care of children with disability, giving them access to a quality life.
They also educate society on the importance of differently-abled children.
Recently, Almasi Guardians collaborated with other initiatives pursuing the same cause and held a Special Parents Hangout Vihiga County Edition, aimed at supporting parents of children with autism.
In an exclusive interview with Scholar Media Africa at Mbale town in Vihiga County, Ms. Mmbone explains to us why she came up with Almasi Guardians.
“It started with my own job as a sports journalist for people with disability while working with Special Olympics Kenya.
I learned that a person with a disability has the ability not only to change their life but also society. They are capable of achieving their dreams regardless of their conditions,” she says.
Ms. Mmbone explains that PWDs can also participate in sports excellently, putting our nation on the global map like any other person, as many of them have brought medals to our country Kenya.
Dr. Anita Atemo, an Occupational Therapist at Vihiga County Referral Hospital, says it is a condition that affects children in that they have a different perception of information coming into their brains; hence they cannot sieve and act on one piece of information.
“Every person with autism has an issue dealing with one task at a time.
They have attention deficit in social communication and the presence of restricted interests and repetitive behaviors and inability to function effectively in school, work, and other areas of life,” Dr. Atemo explains.
What causes autism?
From time immemorial, some communities have considered Autism as a curse in the community.
It is a disorder that has been very much misunderstood in the past.
Misconceptions can lead to some autistic people feeling isolated and alone. In extreme cases, it can also lead to abuse and bullying at school or even at home.
Many large scale, gold-standard scientific studies have been done, and there is simply no scientific evidence to support the myths and misconceptions about ASD.
Dr. Vitalis Juma, a medical superintendent at Vihiga County Referral Hospital, says autistic children are normal children; as they grow, there is always a change in social behavior.
“ASD is a neurobiological disorder influenced by both genetics and an environmental factor affecting the development of the brain as the child grows,” he says.
The expert explains that children who have autism should be treated just like other normal children.
“They should be allowed to go to school so that they may get occupational and sensory stimulation which include school tasks such as coloring, cutting and possibly handwriting, toileting, buttoning and social participation,” the expert explains.
Challenges for parents of children with ASD
Families having children with ASD face many challenges as the disorder is associated with disruptive antisocial behavior.
They face extreme difficulties in dealing with their children’s challenging behaviors, teaching them to communicate, teaching them basic life skills, guarding them against danger, and preparing them for adult life.
Besides, such families also experience high levels of stress, high recurrence risks, misconceptions and assumptions, and feelings of guilt and blame regarding their child’s diagnosis.
The social stigma attached to the disorder causes a lot of discrimination not only against the autistic child but also against the family as a whole because the family is seen to be a part of the illness.
Having a child with autism in the family may have adverse effects on various domains of family life, including marital relationships, sibling relationships, adjustment, family socialization practices, and the running of normal family routines.
Colleta Adisa has been caring for Fenny Musimbi, her daughter, for more than 26 years after being diagnosed with ASD at the age of two.
The mother of four chose to leave her career job and bear the burden of caring for her daughter after their father neglected his family.
“I have washed people’s clothes to ensure my daughter gets enough basic needs since she is an adult.
She needs sanitary towels, food not just food but sweet food. I am supposed to make her hair to ensure she’s equal to the other children in the family,” she says.
According to Ms. Adisa, raising a child with such a condition was an eye-opener for her.
“I had to engage myself in many activities to ensure my daughter gets the best especially from a community that considers her as a curse. Her well-being and medical access mattered to me,” the mother recounts.
It takes so much courage and strength to be a responsible mother to a child with a disability.
Many mothers feel helpless and frustrated because ASD children demand daily care.
Moreover, uncertainty about the child’s education and job opportunities, living conditions, and ability to adapt successfully to adulthood contributes to intense worry.
A lot has to be done to ensure autistic children are living a normal life just like the other children, both at home and at school.
Everyone handling the child, be it a teacher at school, a parent at home, and the government at large, stands accountable.
First, teachers must recognize that they may not be able to teach children with autism the same way they teach neurotypical children.
While teaching a child with autism may seem daunting, doing so can often prove to be one of the most rewarding parts of a teacher’s career.
Secondly, parents should explain autism to siblings.
This helps them understand their autistic sibling, strengthening their relationships with their sibling, which is good for all your children.
Thirdly, parents should make special time for their autistic children and this can be done by setting aside regular time for your autistic child.
It might be a bedtime story or 10 minutes together at the end of each day.
Lastly, the government should create awareness for communities in marginalized places so that they learn to love and care for such children – instead of casting out the mothers and children, thinking the family is cursed.
Dr. Isaac Manyonje is the chairman of the National Council for Persons With Disability (NCPWD) in Kenya.
He appeals to the county governments to invest more in enough personnel and equipment that can enable parents to access services for their children.
“County governments should begin to put in structures and systems that can bring services especially for therapy on level three hospitals,” says Dr. Manyonje.
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“Parents should ensure their children have the disability card and the National Identification Card as it ensures easy access to services. A child with a disability has a right to a national Identification Card,” he explains.
He urges medical doctors to ensure services and medical reports for such people are made free.