Adult Autism Spectrum Disorder

Written by Vitalio Angula, a socio-political commentator and independent columnist.

 

When Carmen Nangolo (27) was younger she was often disorganized and easily distracted. She also didn’t get along with children her age and was considered disruptive at school. A visit to a therapist and a professional  assessment led to a diagnosis of Attention-Deficit/Hyperactivity Disorder (ADHD) but her reaction to the medication she was prescribed wasn’t addressing her condition. After similar visits to medical experts and further assessments she was diagnosed with Autism Spectrum Disorder a neurological disorder which typically presents with similar symptoms like ADHD but is nonetheless different and requires a different set of treatment.

“Neurodivergent is a nonmedical term that describes people whose brains develop or work differently for some reason. This means the person has different strengths and struggles from people whose brains develop or work more typically. While some people who are neurodivergent have medical conditions, it also happens to people where a medical condition or diagnosis hasn’t been identified”(Cleveland Clinic, n.d.).

World Autism Day 2024

The United Nations (UN) declared the 2nd of April as World Autism Awareness Day in 2008 to draw attention to the growing need for innovative programs designed to support those with autism. The theme for World Autism Day this year is ‘Empowering Autistic Voices’.

It aims at providing more support and power to individuals with autism in order to ensure they lead meaningful lives and even pursue meaningful careers.

The Circle of Hope

Victoria Joel runs the Circle of Hope (COHA) institution in Ongwediva in Northern Namibia where discrimination and stigma towards children and adults living with autism is quite prevalent. Joel’s institution stands out because although her institution is for children with intellectual disabilities she also accepts kids who do not have intellectual disabilities and neurological disorders in order to create an environment of acceptance and understanding.

“COHA is registered with the Ministry of Education and follows the national curriculum. We also train parents, siblings and relatives of children with intellectual disabilities and neurological disorders in-order to foster understanding, awareness and improve quality of life”, said Joel.

According to Joel, amongst Aawambo people who make up the majority of the population in northern Namibia myths regarding intellectual disabilities persist which makes her work difficult because she is often called names like “the teacher of the dumb children”.

“Some Aawambo believe children with intellectual disabilities or mental differences to be cursed or bewitched. Some myths include accusations that the mother of the child was involved in sexual activities with a man who is not the father of the child during the pregnancy and as a result the child was born with a mental “abnormality”. Other myths suggest the father’s family was not accepting of the child’s mother and put a curse on the child. Although these myths cannot be proven, and are definitely false, people still believe them and this furthers stigma and discrimination within society”, Joel further said.

The Autism Association of Namibia

Petra Dillman is the Founder and Director at the Autism Association of Namibia, an association made up of parents, their children and adults with Autism Spectrum Disorder and professionals who are interested in promoting the well-being of persons with autism spectrum disorder within Namibia and to provide a network between the various autism organizations worldwide.

“Our aim is to provide support and assistance as well as training in the field of autism to parents and professionals. In the current economic climate and with the diverse needs of various members of the community this is becoming increasingly difficult”, she says.

Dillman confirms Joel’s (COHA) assertion that many Namibians link autism to witchcraft and wants the narrative to change.

She says this can only be done through awareness which can foster understanding and enhance acceptance.

“Having an autistic child can lead to conflict between parents who may differ when it comes to discipline. With some couples this conflict can even lead to divorce and that is why it is crucial for parents to be open to learning about autism spectrum disorder and be equipped with the skills in raising a child with autistic spectrum disorder”, Dillman says.

Tanatswa Taruvinga(28), an adult thriving despite living with Autism Spectrum Disorder and ADHD says the condition is often undiagnosed, misdiagnosed and often diagnosed late amongst black women if they are “high-functioning” or “low-support”

This she said can be attributed to historical health disparities between white people and black people in the mental health community worldwide.

“The standard test for autism was designed for diagnosing  neurodivergence  in young white boys. The problem with that is that it didn’t take into consideration how symptoms manifest according to how a person is nurtured. So symptoms in a non-white and non-male person would manifest differently. Black women around the world often get diagnosed late if not at all. They go through life wondering what’s wrong with them and why they can’t seem to function like normal people. That’s because for autistic people social cues and habits are hard to comprehend and require extra effort to learn whereas the average person innately knows these things ”, Taruvinga says.

The World Health Organisation

According to the World Health Organisation (WHO), 1 out of 100 children have autism, in adults the prevalence rate remains the same. There are no statistics in Namibia so experts like Dillman rely on global figures in estimating the incidences of Autism Spectrum Disorder in Namibia.

Victoria Joel says children with Adult Autism Spectrum Disorder have unique challenges and needs and there is no standard manual in teaching the children. She says she teaches them according to their unique personalities and believes giving them equal opportunities can improve their lives to the extent that they can become independent adults.

Carmen Nangolo is thriving despite her diagnosis. She works as a graphic designer and has an employer who is informed about her condition and gives her the necessary structure, opportunity and freedom to pursue her career and thrive while being autistic.