AS the rest of the world come together to mark International Autism Day on Saturday, April 2, Doreen Kunihiira and her husband Stephen, recall the trauma they went through when their son was first diagnosed with autism.
“The problem started when my son began failing his milestones as a baby – sitting, crawling, etc. Then he began to withdraw from people including us,†she laments.
“We went to a paeditrician who suspected it was autism. We contacted our parents who told us to perform all rituals associated with twins. My son is a twin;.the girl is fine. We contacted specialists and they confirmed our fears,†she says.
This ailment has brought the family closer, considering the fact that the divorce rate of parents with special needs children is high.
“These were our first children born in 1999. We chose to devote most of our time and resources to giving our boy quality care,†Kunihiira says.
They have failed to find a suitable school because some special needs schools treat the children like prisoners. Some schools have no equipment and no speech therapists, and are extremely expensive.
Normal children stigmatise the autistic children out of ignorance and in some cases on instructions from parents and teachers. “We seek acceptance from fellow human beings,†she says.
Educating a special needs child is costly and intervention is non existent.
“We call upon policy makers to appreciate the fact that these children too are Ugandans. Their parents too pay taxes and the children are entitled to affordable education and healthcare,†Kunihiira says.
Some parents of autistic children formed support groups, but many have resigned to their fate and opt to isolate the children.
Some organisations are taking advantage of our adversity to make money.
“As parents, we need to come out and fight for our children with one voice,†Kunihiira says.
Understanding autism
Many parents with autistic children do not know their children have the problem and that the problem can be handled by trained teachers and therapists. It is out of the desire to inform parents and caretakers about the condition that Frederick Sembatya, a special needs specialist, highlights the following issues about autism.
What is autism?
It is a disorder of neural development characterised by impaired social interaction and communication, and restricted and repetitive behaviour.
Sembatya, who trained in Cuba and the US, says: “Autism qualitatively impairs children’s development and communication. This affects the child’s learning system.â€
There are many cases of autism in Uganda though there is no data about its prevalence.
“I handle other cases like epilepsy, dyslexia, down syndrome and cerebral palsy. But parents usually call me and I attend to their children,†says Sembatya, who has handled at least 30 cases of autism in since 2007.
He says some children have multiple disorders and since they are not medical conditions, doctors cannot detect them by merely carrying out medical laboratory tests. Parents spend lots of money treating a condition they do not know.
Sembatya says autism is a neglected disorder and many patients live in denial.
He says the signs of autism like impaired social interaction begin at a tender age of three and four years. Autism affects information processing in the child’s brain by altering how nerve cells and their synapses connect and organise this information so that a child can interpret it and effectively communicate.
The United Nations declared April 2 World Autism Awareness Day, to increase and develop world knowledge of autism. The day aims at bringing together autism organisations so as to give a voice to the individuals worldwide who are undiagnosed, misunderstood and looking for help.
Studies done at the US’ Centers for Disease Control and Prevention show that autism has a strong genetic basis, although the genetics of autism are complex and it is unclear whether autism spectrum is explained by rare mutations, or by combinations of common genetic variants.
In rare cases, autism is associated with agents that cause birth defects. Sembatya says one can notice autism signs in the first two years of their children’s lives. The signs usually develop gradually, but some autistic children first develop and then regress.
On early detection, behavioral or cognitive intervention can help autistic children gain self-care, social, and communication skills. Although there is no known cure, there have been reported cases of children who have recovered.
Some warning signs that may indicate your child falls somewhere on the autism spectrum;
Autism: Grim condition commonly misunderstood?
