World Autism Month: Autism in Africa

April is World Autism Month, and Autism Speaks is inviting people from around the world to come together to pledge to go blue to increase global understanding and acceptance of people with autism.

According to Autism Speaks, a non-profit which was founded in February 2005 by Bob and Suzanne Wright and grandparents to a child with autism, autism or autism spectrum disorder (ASD) is a broad range of conditions characterised by challenges with social skills, repetitive behaviours, speech and nonverbal communication.

In 2018, Centers for Disease Control and Prevention (CDC) determined that approximately 1 in 59 children is diagnosed with ASD. 

One of the most common questions asked after a diagnosis of autism is what caused the disorder. Research has shown that there is no one cause of autism. Research also suggests that autism develops from a combination of genetic and non-genetic or environmental influences. These influences appear to increase the risk that a child will develop autism. However, it’s important to keep in mind that increased risk is not the same as cause. For example, some gene changes associated with autism can also be found in people who don’t have the disorder. Similarly, not everyone exposed to an environmental risk factor for autism will develop the disorder. In fact, most will not.

Here are some basic facts about ASD (Source: CDC and Autism Speaks):

• ASD is reported to occur in all racial, ethnic, and socioeconomic group
• Because autism is a spectrum disorder, each person with autism has a distinct set of strengths and challenges.
• The ways in which people with autism learn, think and problem-solve can range from highly skilled to severely challenged.
• Some people with ASD may require significant support in their daily lives, while others may need less support and, in some cases, live entirely independently.
• Indicators of autism usually appear by age two or three. Some associated development delays can appear even earlier, and often, it can be diagnosed as early as 18 months.
• Research shows that early intervention leads to positive outcomes later in life for people with autism.
• Research indicates that genetics are involved in the vast majority of cases. 
• Children born to older parents are at a higher risk for having autism. Parents who have a child with ASD have a 2–18% chance of having a second child who is also affected. 
• A diagnosis of autism is an important turning point in a long journey to understand your child’s world.
• Applied behavior analysis (ABA) and therapies based on its principles are the most researched and commonly used behavioral interventions for autism. 
• Many children affected by autism also benefit from other interventions such as speech and occupational therapy. 

Autism doesn’t only affect the diagnosed child; it affects the entire family and many families are broken after a child is diagnosed. This is because ASD comes with so many challenges and it becomes a huge burden for the caretaker(s), resulting in negative financial, social and psychological impacts on families.

Some of the challenges of ASD include the following:

• An estimated one-third of people with autism are nonverbal
• 31% of children with ASD have an intellectual disability
• Nearly half of those with autism wander or bolt from safety
• Nearly two-thirds of children with autism between the ages of 6 and 15 have been bullied
• Nearly 28% of 8 year olds with ASD have self-injurious behaviours

Some of the medical and mental conditions associated with ASD include ADHD, chronic sleep problems, anxiety disorders, depression, chronic gastrointestinal disorders, epilepsy and schizophrenia.

Also, keep in mind that autism-associated health problems extend across the life span – from young children to senior citizens. Mothers of children with ASD, who tend to serve as the child’s case manager and advocate, are less likely to work outside the home,and consequently, they tend to suffer the most.

Autism in Africa

When it comes to ASD-related data or research in Africa, there is very little. Covering ASD and how it affects Africans in Africa and in the diaspora, Special Needs Parenting Consultant Dr Sazini Nzula points out that for Africans, autism is still largely seen as a condition that affects other races, Caucasians, Asians and maybe even some Caribbean because of their mixed heritage. Surprisingly, for such a large, diverse continent of 54 countries and an estimated 2000 languages, knowledge of autism is universally low across Africa. This issue is compounded because some Africans believe curses or witchcraft are the causes for autism, which then plays a part in the resulting secrecy and isolation. It is the reason cited for hiding the diagnosis from family members and other members of the African community. If they admit to having a child with autism, they risk being shunned for fear that their ‘curse’ might affect those close to them. For this reason, many are more comfortable discussing autism with ‘others’ but not with those within the African community.

Dr Sazini goes on to state that the collectivist African culture, with its clear rules of conformity, has difficulty with the behaviours of individuals with autism that often flout those rules. She said,

‘While it’s true that I have had plenty of judgmental stares at the grocery stores and shopping malls of suburban Canada where I live, it was noticeably higher when I travelled recently to Southern Africa with my children who have autism. Where Canadians will judge quietly, my fellow Africans have lots of opinions and love to express them loudly, especially unsolicited. Whenever I could, I tried to explain that my child was not just a spoilt, misbehaving brat from “overseas”. Each time, I failed miserably to adequately describe the complexities of autism in the limited time we would have.’

According to the non-profit organisation, Chip International USA, autism in Africa is often compounded by severe stigma, a dire need for awareness and knowledge of intervention methods, a lack of resources and a lack of community support. For example, a survey done in Nigeria had 40% of nurses citing ancestral spirits, enemies, sin or the devil as the reasons for autism in Africa. These attitudes mean that help for autism and developmental disorders in Africa is often first sought from traditional healers or religious leaders, rather than from medical clinics or practicing medical professionals, increasing the incidence of late diagnoses. Without access to early interventions or speech therapy, children with developmental disabilities in developing countries are more likely to be nonverbal.

Autism in Sudan

A study sponsored by the European Academic Research titled “Autism and its Impact on Families in Three Autistic Centers in Khartoum State, Sudan” is one of the few studies that can be found on autism in Sudan. The study sites similar issues that are faced in the US as it said:

‘Autism affects families enormously. They are challenged physically, emotionally and financially. Every day activity that most of us take for granted has to be carefully planned and executed. It was obvious that autistic children have a negative impact on their families as the families with autistic child suffered lack of sleep, had family problems related to the parent relationship, difficulty planning social occasions, siblings reporting embarrassment of having a brother/sister with autism and stopped working to care her autistic child. It is recommended to establish national awareness campaigns in all the available media about autism as well as opening governmental and private autistic centers to take care and give enough support to these needy children and their families.’

Even though autism awareness remains low across Africa, there are some encouraging signs. The first Autism in Africa Conference was held in Accra, Ghana in 2014, showing a desire for learning and developing cohesive strategies to tackle autism in the continent. It has now become an annual event. In recent years, autism organisations have begun to emerge and are active in different African countries.

Sharing Dr Sazini’s hope, as World Autism Awareness Day is observed on 2 April every year, more awareness and knowledge about autism will enlighten Africa and Africans across the world. Hopefully, stigma, shame and isolation will turn into awareness, acceptance and inclusivity. Hopefully one day, even the smallest of African villages will help raise children with autism and support their families.

If you know someone with ASD or a family member that has a child with ASD, don’t pity them. Don’t pass judgement. Show compassion and offer help as much as you can. Even if they turn you down, keep offering. Do not exclude them, especially from family and social activities or events. Invite children with ASD to a play-date, party or a day at the park.

10 things parents of autistic kids want you to know:

1. Just because a child is nonverbal, it doesn’t mean he/she has nothing to say.
2. Please don’t stop inviting us to things.
3. If you know one autistic person, you know one autistic person.
4. I’m an expert on my kid. I am an expert on what it means to be autistic.
5. We’re exhausted.
6. We don’t want your unsolicited advice.
7. If my child weren’t autistic, he wouldn’t be himself.
8. The problem isn’t that my child is autistic, the problem is that the rest of us are not.
9. We don’t need awareness as much as we need acceptance.
10. I don’t need your pity.

Terhas Berhane-Rwakaara is an Eritrean-Ethiopian, born and raised in Sudan. Now based in the US, she is currently a full-time management employee with two children. With high family and community values, faith and family are her priorities. She is also a huge advocate of civic duty and volunteerism, and is passionate about mentoring women. Diagnosed with ADHD as an adult, she feels the responsibility to do more to raise awareness and remove the stigma associated with mental illness in her culture.