PARENTS’ EXPERIENCES WITH AUTISM – GhettoRadio 89.5 FM

In summary

• Researchers indicate that early intervention can improve a child’s development in future independence.
• When you look up what autistic people and family have talked about in their journey, the most important piece of Advice you will see again and again is to remain calm.

“Ever heard of Asperger’s?” A line in Eminem’s track ‘Wicked Ways’ where he hints at being autistic throughout his legacy. During his school years Eminem was known for pretending to be ill to stay at home and he says that he was ‘shy and awkward.’ He got bullied at every school he attended but later got revenge by dissing the bullies in his track.

Did you know, according to the centres of Disease Control and Prevention (CDC) about 1% of the world’s population has autism spectrum disorder over 75,000,000 people. The prevalence of autism rates varies significantly across different countries. Kenya however has an autism rate of 402.57 per 100k people and is ranked number 46 in the whole world. Autism rate in children in Kenya is about 438.03 per 1000k and it is ranked number 52 in the world.

Autism Spectrum Disorder (ASD) is a developmental disability caused by differences in the brain. It impairs the ability to communicate and interact. Autism is present at birth and some of the early signs that parents/guardians needs to note include:
Limited or no eye contact
Few or no smiles or facial expressions
Limited sharing sounds
Not looking at objects being pointed to.

Researchers indicate that early intervention can improve a child’s development in future independence.

They say it takes a village to raise a child, that is especially true for parents with autistic children taking into consideration that finding a community of not just medical experts but people who intimately understand the unique challenges of parenting an autistic child can make all the difference.

Parents Experience with Autistic Children
Many Kenyan parents have had their fair share of hardships and according to Walter Njoroge who is a parent to Nyawira an autistic child says it has been a long journey. He further states that autism cannot be resolved but it can be managed to a point where the child gets to live an almost normal life. “I had to give up my job and career to stay at home and take care of my daughter,” says Wambechi Njoroge who is Nyawira’s mother. “I decided to stay home full time after I realized my house help could not handle the scope of Nyawira’s condition.’’ She continues.

Further into the interview Nyawira’s mother says that she was forced to go to school and explain to the teachers that Nyawira needs special attention 24/7. “Our child was born normal according to us but when she got to 3years she was not talking. She was not responding to being called and we were worried she might be deaf.” Walter Njoroge opens up.

Walter Njoroge took Nyawira to hospital and after a series of tests she was diagnosed with autism. According to the interview conducted by ‘your voice’ Nation Tv, Nyawira’s parents stated that the biggest challenge they face is understanding their autistic child. “I am very involved in school,” Nyawira’s mum says.

In a video on YouTube a parent with an autistic child gave her side of the experience and she said that the mother of the child is the informant in the case of diagnosis. She went ahead and said that her immediate reaction when she realized her child was autistic was to move them from a mainstream school to a special school.

Stigma Attached to Autism
According to experts, many parents are ashamed of their children being different and end up hiding them from the society. However, there are many theories and misconception surrounding autism and some Kenyans do not have enough knowledge about Autism. Some went ahead and said that autism is spread through another child who has it as well.

Some parents follow recommendation from teachers and they can hardly strike a balance between living their lives and taking care of their autistic children and it is even harder for the children because of the discrimination they face.

In light of world Autism day which is 2nd of April, the theme this year is; Transforming the narrative; Contributions at home, at work, in the arts and in policy making. In line with the theme World Health Organisation has recognized the need to strengthen the country’s abilities to promote the optimal health and well-being of all the people with autism.

When you look up what autistic people and family have talked about in their journey, the most important piece of Advice you will see again and again is to remain calm. Many people with autistic patients have not been able to get the best care and treatment because not all hospitals are equipped with the necessary equipment needed. Another stumbling block is that therapy is quite costly.

Felicity Nyambura who is a founder of Autism Society of Kenya says that she started the society in 2003 because his grandson was born with autism. She further says that many people have mistaken an autistic person having a meltdown to throwing a tantrum. She says that autistic patients are either branded mad or cursed because many believe there is no disability known as autism. Felicity says that the government is not seemingly interested to understand how autism has affected the society and those living with it.

According to Doctor Lincoln Kamau a Kenyan autism expert who is based in the US explained that Autism has always been in Kenya but many people are never identified or even diagnosed.

World Autism awareness day observance is specifically aimed to explore the contributions autistic people make at home, at work and in policy making. It aims to put a spotlight on the hurdles that people with autism and others living with autism face every day. Autistic people have unique talents and a focus should be put across to embrace and welcome these skills deserve through community events in Kenya

With proper care, therapy and attention autism can be managed properly and those living with it can live a normal life despite experiencing hardships and some even neglect. Research demonstrates that early intervention can improve a child’s development and future independence.

WHO comprehensive mental health action plan 2013-2030 and world Health Assembly Resolution WHA73.10 for “global actions on epilepsy and other neurological disorders” calls on countries to address the current significant gaps in early detection, care, rehabilitation for neurodevelopment conditions. Similarly, WHO calls for counties to address the social, economic, educational and inclusion needs of people living neurological disorders and their families, and to improve surveillance and relevant research.

Autism Care Places that you need to know
Nile Road(Off Joggo Road) Eastland’s- you can visit their Facebook page: http://www.facebook.com/vulnerablechildren/
Kenya Community Centre for Learning (off Thika Superhighway, exit behind Thika Road- you can reach them via email [email protected] or their website http://www.kccl.ac.ke
Kenya Institute of Special Education (Kasarani, thika superhighway)- visit their website; www.kise.ac.ke