ATHENA BARWOKE Living with autism

 Thirty-year-old Athena Barwoke suffered discrimination, stigmatisation and bullying for the better part of her life. Unable to cope and understand why she was different, she attempted suicide twice. It wasn’t until she accepted her condition that the world opened up for her. She shared her experience with MWAURA MUIGANA.

“Growing up was very hard. I was never quite like other kids my age and did things differently. I didn’t understand why. I had problems with communication, social skills and behaviour. Although I wanted to have friends, I always got into arguments whenever I played with them and ended up having none. Nobody seemed to play by my rules. That was very upsetting.

Although my parents were very supportive, they too didn’t understand my behaviour or why I was different. Mum bought many medical books and journals in search of information on my condition but they didn’t help much. While they anticipated when my next episode would be, they didn’t know what to do about it. And so when I went into an episode, they just sat back and hoped that I would either get over it on my own or outgrow it.

The several high-cost schools I attended didn’t know either how to handle my special needs. Often I became very agitated and withdrawn and would yell at everyone who tried to talk to me. I felt like everyone hated me because I got into arguments with anyone I attempted to play with.

Children and adults alike appeared very mean to me. Many branded me insane and a retard. Eventually this started getting into me. I felt rejected and depression started building up. I was often picked on in school and outside, bullied, taunted and called names. I didn’t know how to stand up for myself and the school did little to help. Slowly, I became withdrawn.

My parents consulted several doctors and asked many questions that went unanswered. It was very frustrating because they knew I had a problem and couldn’t wish it away. Some doctors thought I was deaf, I thought so too because whenever someone called out my name, I just didn’t know where to look or where the voice was coming from. Others thought I had cerebral palsy because of my poor motor skills, such as running or walking. I guess due to lack of knowledge about my condition at the time in Kenya, medical practitioners couldn’t help me.

A name to my behaviour…

In 2006 when I was 13, my mother and I went to UK to seek specialized medical help. Dr. Lorna Wing at the National Autistic Society in the UK diagnosed me with Asperger syndrome (a high functioning form of Autism). When we returned home, my parents and doctors still didn’t understand the condition and no one explained it to me. However, at least there was a name to it – autism

My quest to learn as much as I could about the condition began. The problem was that there was very little or no information on Aspergers syndrome. I devoured mums medical books and journals but they were boring and too technical for my young mind. Indeed it’s after the diagnosis that I started to really notice how different I was. Depression hit hard at teenage in addition to the stigma I encountered with some peers telling me that I belonged to a psychiatric ward at Mathare Mental Hospital. I didn’t want to accept that. I hated it and thought that having autism made me stupid.

Because of the bullying that went on for several years, in a sense I lost my ability to be a part of the world around me. The peer abuse took away my ability to see myself as a person in relation to others. The terrible psychological and life changing negative effects that bullying can have on a child happened to me. I had low self-esteem, was prone to depression and at only 18 years attempted suicide, not once but twice!

Despite enrolling in college in Nairobi, I was uncertain about what I wanted to study and become in future. In late 2006 I went to South Africa and studied childcare because I love kids. After two years of study and a bit of working there, I returned home and took up freelance photography for a while. I was still in denial and in 2010 I went to Australia where I ended up doing different jobs in addition to traveling all over the country.

When I returned home a year later, I felt I really needed to understand my condition. I couldn’t talk to anyone about it because no one seemed to understand what it was and no one with the condition was brave enough to talk about it. I was very embarrassed about it myself.

Online research about Asperger syndrome informed me a lot of things about the condition and things began to fall into place about my behaviour. I connected with support groups and survivors online who helped me understand the condition. They understood and accepted me and they became like a family to me. This knowledge helped to boost my self-confidence after realising that autism is nothing to be ashamed of but something to be accepted and appreciated. It was nothing to hide and should be accepted anywhere.

Later on, I connected with Autism Awareness Kenya (AAK), an umbrella organisation formed by professionals and parents from both private and public sector to create awareness about autism in the country. It is a forum that brings together parents and professionals to share and learn from one another as well as to continue increasing awareness about autism and help reduce stigma. During its annual Autism Awareness Week, the organisation holds autism awareness events in towns across the country.

I attended their fundraiser days and also volunteered with them. I began to understand that any form of disability or challenge is often associated with a lot of stigma. Autism was even much less understood hence very stigmatised and consequently there was very little support system for people living with the condition. Indeed, it was apparent that autism was still relatively unknown and less talked about, due to lack of awareness, education, support and understanding. Though there are centres today and schools that work with people living with autism, they are very few and often too expensive for majority of the people.

I learnt that in many rural areas, children and adults who display the typical autistic signs are often stigmatised, denied education, labeled as bewitched and victimized, and in extreme cases even murdered. Because of this association with witchcraft, many families would rather take an autistic child to a traditional healer, who has no clue what autism is.

At Autism Awareness Kenya, I interacted with parents and other affected people who told me of incidents of their loved ones living with autism or other disabilities, who had committed suicide because of lack of support. Some in the rural areas especially are hidden away from the public or tied with ropes to contain them. Even among the middle class families in urban centres autism has yet to be accepted and is considered an embarrassment, which shouldn’t be the case. Autism is just a different way of looking at things.

Walking autism…

I have been encouraged to do what I can to improve autism awareness in Kenya in particular and Africa in general. I want to use my example as a person living with Asperger syndrome to help in a project called Walking Autism to create awareness and education on autism, encourage acceptance, reduce stigma and discrimination, and reinforce the need for services and support for autistic people.

The project involves walking around the country first and then to some parts of Africa, right into the villages and urban centres talking about all issues concerning autism. I have embarked on a long distance walk to various parts of the country talking to people about autism. The first walk starts from Laikipia in Mount Kenya area to Mombasa and back by April 2014.

By walking I can easily interact and identify more with people within the communities, in clinics, barazas, youth groups, women groups, and community development groups, among other forums. The aim is explain to people what autism is and why it happens. I will also be advocating for children with autism not to be locked up in the house but allowed go to public places where they can get support, as this helps to reduce stigma and helps those living with autism to live productive lives.”

(Side bar)

More about Asperger syndrome…

Asperger syndrome (AS) is one of a group of neurological disorders known as autism spectrum disorders (ASDs). People with AS have difficulty in social interactions, engage in repetitive behaviour, are rigid in thinking and focus on rules and routines.

Some people with AS are classified as high functioning.

High functioning autism (HFA) means that these individuals do not have the delayed language acquisition and cognitive development that is typical of many people with autism spectrum disorders. Often, they have normal or above normal intelligence. In addition, they are frequently able to be educated in mainstream classrooms and hold jobs. AS cannot be cured, but early diagnosis and intervention can help a child be less socially awkward, achieve his or her potential, and lead a productive life.

What causes it?

Changes in the brain are responsible for many of the symptoms of this disorder. However, doctors have not been able to determine precisely what causes these changes. Genetic factors and exposure to environmental toxins such as chemicals or viruses have been identified as potential contributors to the development of the disorder. Boys are more likely to develop AS than girls.

What are the symptoms?

Children with AS often have an obsessive focus on a narrow topic of interest. This interest can be the subject of one-sided conversations with peers and adults. A person with AS is oblivious to the other person’s attempts to change the topic of conversation. This is one of the reasons that children with AS may be considered socially awkward.

Published in December 2013