Unseen and Unheard: The Unique Challenges of Diagnosing Autism in African Women and Girls

Autism Spectrum Disorder (ASD) is a condition that impacts how people behave, communicate and interact with their environment. It is part of a group of conditions called neurodevelopmental disorders which affect how the brain develops, and symptoms usually appear within the first 2 years of life. In many African societies, ASD is often misunderstood and consequently people with autism can be stigmatised against due to different sociocultural factors including the sometimes-negative perception of people with disabilities and a general lack of awareness.

There is a gender bias in ASD diagnosis, where girls are under diagnosed and often misdiagnosed because they tend to exhibit different symptoms that are less recognised as the ‘norm’ for the condition. This article aims to provide an overview of ASD and discuss the gender bias in autism diagnosis. 

Autism Spectrum Disorder (ASD)

Autism is a spectrum disorder, meaning that there is significant variation in the symptoms and severity of the condition. People with autism are not all the same, as some require little to no support while others may require round-the-clock care. The current diagnostic criteria for ASD include:

1. Difficulty with social communication and interaction with other people
2. Restricted or repetitive patterns of behaviour
3. Symptoms present in early childhood and cause significant functional impairments (for example, affecting ability to function in school, or other areas of life)

Signs and Symptoms of Autism

There are many signs of Autism, that can differ in intensity and presentation in different people. A few examples of ASD symptoms include:

1. Difficulty making or maintaining eye contact
2. Repetitive movements like flicking fingers or rocking back and forth
3. Unusual speech patterns like repeating phrases or words
4. Becoming upset when there are slight changes in routines 
5. Being less or more sensitive to sensory input like sound, clothing or light, than other people
6. Overly focused interests in certain objects and/or an intense interest in specific topics. 

Causes of Autism

The specific causes of ASD remain unknown, but it is thought that both genetic and environmental factors can affect brain development in ways that lead to ASD. 

Autism in Women and Girls

Over the last decade, the increase in awareness of neurodevelopmental conditions like ADHD and ASD has led to a higher number of adults being diagnosed with these conditions. Among those adults diagnosed, are women, many of whom had been previously misdiagnosed or signs of their ASD had been missed in childhood. Many women report feeling dismissed by healthcare professionals when seeking a diagnosis, or their concerns ascribed to other conditions. It is estimated that about 80% of women with ASD are misdiagnosed, usually with conditions like anxiety, borderline personality disorder or eating disorders. ASD research remains limited in sub-Saharan Africa, but many case reports involving ASD published in Nigeria, reflected late diagnosis of ASD.

There are several reasons why ASD is often misdiagnosed or missed in females, one of which is that many people’s understanding of the condition is limited by outdated stereotypes and misinformation. Moreover, ASD characteristics tend to present differently in females than in males, and the knowledge that people tend to have of ASD, and the current diagnostic tools used can fail to recognise symptoms as females experience them.

For example, autistic women and girls are less likely to have obvious social difficulties than autistic males. This is largely because females are more likely to ‘mask’ their autistic traits more than males. Masking is a coping mechanism used by neurodivergent people (people whose brain works and processes information in a way that’s different from what is considered typical). Masking can be used consciously or subconsciously to help neurodivergent people to fit in and avoid stigma or discrimination. Examples of this include forcing yourself to make eye contact, changing the tone of voice, suppressing or hiding repetitive behaviours like hand flapping, not sharing interests due to being concerned that they may be seen as unusual. For autistic girls who are doing well academically, their academic success might overshadow difficulties in other areas, or some may even be part of a friend group so difficulties in social communication may be missed.

“I was told on many occasions that I was over-sensitive, selfish, overreacting or too serious, whether it be in a school, work or family situation. ... I felt like a pain and a burden, so I started masking, bringing out those traits of mine that I thought were the most likeable … while trying to hide the anxiety or squash all the reactions that would be considered over the top. This did not always work so well for me, and the mask would be dropped when things got too much.”- Ursula from Now I know Campaign

Stereotypical examples of repetitive behaviours and highly focused interests include repetition of the words or phrases and a fascination with objects like trains. In girls and women, these behaviours can be considered normal, like interest in unicorns or reading books and repetitive hair twirling. Often, girls might also be quieter about their interests. 

Studies have shown that autistic women tend to get lower scores in questionnaires that assess some autistic characteristics, and most mental disorders that autistic women tend to be diagnosed with like borderline personality disorder and social phobia often result from autism-related causes. 

Misdiagnosis or missed ASD can be a heavy mental burden for women. Many grow up feeling confused and sometimes isolated, leading to mental health difficulties, burnout, and low self-esteem. They may grow up being told that they have character defects or feeling isolated. 

ASD Diagnosis and Research in Africa

Many autistic people live in low-middle income countries, with very high numbers of children with neurodevelopmental disabilities in sub-Saharan Africa. However, only about 1% of autism research is emerging from sub-Saharan Africa, and this poses a large barrier to support, awareness and the resources available for autistic people and their families. The lack of adequate research, awareness, stigma and misinformation around autism and a shortage of trained healthcare professionals that specialise in neurodevelopmental disorders all contribute to the need for culturally sensitive and appropriate interventions that factor in socioeconomic differences between first-world countries and the African continent. As a result, African children usually get limited access to developmental support services, owing to several other factors including cultural beliefs attributing more severe autistic traits to witchcraft or omens.

Conclusion

Autism is a complex condition that is often misdiagnosed or missed in girls, owing to several factors including a lack of awareness, and the signs usually exhibited by autistic girls being different from the stereotypical presentation of the disorder. There is increasing awareness about autism in girls, and awareness around ASD in African countries is slowly increasing as more people are calling for better research on neurodevelopmental conditions and to build African expertise in ASD care. 

Written By Yasmin Sani