Autism Awareness Month: This is why girls and women get diagnosed later in life if at all

Over the years, there has been more progress and outreach in terms of raising awareness and educating the public about ASD. However, there is still a way to go. Picture: Pexels

Over the years, there has been more progress and outreach in terms of raising awareness and educating the public about ASD. However, there is still a way to go. Picture: Pexels

Published Apr 14, 2024


April is Autism Awareness Month, a period where activists and communities advocate for and raise awareness about autism spectrum disorders (ASD).

“The abilities and needs of autistic people vary and can evolve over time. While some people with autism can live independently, others have severe disabilities and require life-long care and support,” said the World Health Organization (WHO).

“Autism often has an impact on education and employment opportunities.”

WHO said ASD are a broad set of conditions. They are distinguished by some level of difficulties in social engagement and communication.

Importance of language

Because language matters when approaching sensitive subjects, there is often differing views on what the correct terminology is.

“Many diagnosed with autism prefer using the term ‘autistic’ to describe themselves – this is known as identity-first language. For example: ‘I am autistic’,” Amazing K Therapy and Remedial Academy - Autism School Randburg, Johannesburg said.

“They also feel that with autism, as with all things, how people speak about it reflects how they think or feel about it, their priorities in relation to it, and what they believe to be the truth of it.”

Conversely, others choose use to utilise person-first language, for example, ‘my child has autism’.

The South African Society of Psychiatrist (SASOP) emphasised that access to early diagnosis, treatment, and education can help children and adults with ASD live better lives, but a lack of knowledge, educated experts, and support hinders this, particularly in lower-income communities in the country, Africa, and around the world.

“In many affluent societies, ASD is usually diagnosed by the time a child is three-years-old, as the symptoms are seen early on in a child’s development and behaviours – the ways that they play, learn, speak or behave, particularly in a social context. It is diagnosed three to four times more often in boys than girls,” SASOP said.

Girls/women with autism compared to boys/men

According to Psychology Today, it is becoming increasingly obvious in studies and the public discourse that women with autism differ from men with autism.

This is because the criteria for diagnosing autism evolved primarily on the presentation of boys, leading to a gendered perspective of autism.

“Autistic females are under-diagnosed, particularly in individuals without an intellectual development disorder. Gender bias leads to fewer referrals for females, later diagnoses, missed diagnoses, and misdiagnoses,” said the psychology and human behaviour media outlet.

The Interactive Autism Network at Kennedy Krieger Institute suggested that girls with autism seem to have fewer severe symptoms than boys and are better able to mask their social issues at school.

In environments where the whole spectrum of neurodiversity is not recognised or appreciated, people with ASD frequently feel compelled to display or execute neurotypical social behaviours.

Some people may believe they must hide/mask their neurodiverse behaviours in order to be accepted.

Scientists believe that girls are better at masking than boys. Based on the Child Mind Institute, girls with autism can sometimes regulate their behaviour in public more effectively.

This is because they may have learned to smile or make eye contact from a young age. And they may be more interested in making friends than boys with autism. All of this can lead to a more mild variant of autism, which a doctor may not recognise.

But what does this lack of a diagnosis mean for girls or women with ASD?

Without a diagnosis, girls can be often ‘disciplined’ harshly in schools or not even have access to proper education and resources which can lead to low self-esteem and mental health issues.

Women with autism and mask said that maintaining a social façade can be hard and unpleasant, reported Autism Parenting Magazine.

They grin regardless of whether they want to smile, and they engage socially, even when they don’t want to. Adults frequently express feeling unwelcome and rejected for who they truly are. As a result of always being inauthentic, they lost what it was like to be authentic.

Remaining issues

Parents of kids with autism still face challenges when finding adequate schools that can accommodate those with ASD. Additionally, these types of schools can be expensive and so inaccessible to South Africans who are disadvantaged socio-economically.

Awareness may have grown in the public conscious about ASD but, educating people must persist as there are still those who face stigmatisation due to lack of knowledge or outdated belief.

Progress in awareness

Over the years, there has been more progress and outreach in terms of raising awareness and educating the public about ASD.

This is mostly thanks to activist groups, social media and Autism Awareness Day and Month. Popular media has also played a role.

Historically, in film and TV, people with autism have been overrepresented by who are savants (those who have an exceptional aptitude in one particular field) or those who have extreme social anxiety or have difficulty with other people.

However, shows such as Love on the Spectrum have been a hit with audiences worldwide due to their accurate or authentic portrayal of ASD.

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