Navigating life with a Late Autism Diagnosis

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Navigating life with a Late Autism Diagnosis

5min read

In today’s environment, many autistic people go undiagnosed, or aren’t diagnosed until later in their lifetime, particularly women. A late diagnosis is possible, and it can support people to understand who they are and how they participate in life. But what does a late diagnosis look like?

Autism is not always obvious in people. It’s important to understand that autism can look different on everyone, especially when we consider gender differences.

Autism wasn’t spoken about much in the past, and many people today still hide their autistic behaviour to better fit in. However, inclusion around autism is growing, and we are becoming more familiar with it and how we, as a broader community, can support autistic people.

Keep reading to hear from Novita client Rhiannon, who shares her experience of being late diagnosed with autism and shows us that it is possible for others to learn to navigate their new life like she has.

What is autism spectrum disorder (ASD)?

In the past, autism spectrum disorder (ASD) was considered a medical condition, based on the Manual of Mental Health Disorders (DSM). But many autistic people don’t feel like they have a disease or disorder.

They see autism as just a difference or a way of being. There is a big difference between how medical professionals view autism and how autistic people experience it. Many autistic individuals see autism as a fundamental aspect of who they are, something they embrace and take pride in.

Autistic differences come from the brain and it’s important to understand how these neurological variations affect autistic people. Autistic people may experience differences in social communication, repetitive body movements, and behavioural patterns.

Many people mistakenly view autism as negative behaviour because of common misconceptions. By listening to the voices of autistic people, we can gain valuable insights into their experiences, and learn how behaviours differ between autistic and neurotypical individuals to create a more inclusive community for all of us.

Rhiannon’s experience as an autistic person

Growing up different wasn’t easy for 36-year-old Novita client Rhiannon. She felt like the world wasn’t made with her in mind. People often misunderstood her, which made things a lot harder.

Rhiannon says, “In a world that’s not designed for a square to be put into a round hole, it’s almost like you’re forced to make yourself a circle.

We get judged because we can’t look someone in the eye or make eye contact. There are so many things that neurotypicals who don’t understand what autism is, call us and do that make life so much harder for us.”

Autism was traditionally considered as a ‘male’ condition

For a long time, many believed that autism was more common in males. A lot of the research and assessment tools that detect and measure ASD traits are based on males. This has led our understanding of autism to be based on a male representation. As a result, professionals refer boys for an autism diagnosis more than girls.

Autism looks different in females, who tend to have different traits to males. Because of this, fewer girls are diagnosed with autism because their characteristics may not always fit the typical definition of autism. Research shows that 80% of autistic females remain undiagnosed or misdiagnosed at the age of 18. (Australian Psychology Society)

In the 1990s, many autistic women were not diagnosed because there was not enough research or awareness. Rhiannon says, “As a girl in the 90s, autism was not heard of. You were called weird or quirky.”

Autistic women are also more likely to mask or hide their behaviours, making it even harder for them to be diagnosed.

Rhiannon’s story

Rhiannon was late diagnosed with autism at the age of 35 and has dealt with many challenges. She says, “When you’re late diagnosed, your old self disappears and you have to re-discover who you are as a person to figure out where you fit in, what your life now looks like, and how to do life.”

Rhiannon’s diagnosis came as a surprise to her at the time, when her sister who is a teacher and works with kids living with disability suggested that she was autistic. Rhiannon’s sister noticed similarities in Rhiannon’s behaviour to autistic children, based on her experience working with them.

Rhiannon experiences sensory sensitivity to loud sounds and bright lights. One day, Rhiannon went shopping, and she had to leave because of the sound of screaming kids that hurt her ears.

Sensory sensitivity was just one sign that Rhiannon experienced, however there are many different signs that autistic people experience.

Autistic females may experience the following:

Social difficulties

Autistic people often have trouble with reading and responding to neurotypical social cues. This can make them feel anxious before or after a social situation. Autistic adults often find it hard and uncomfortable to make eye contact.

Difficulty with self-regulation

Autistic people may have trouble staying organised or completing tasks, especially if they don’t find the tasks engaging. Adults with autism may manage their emotions differently. This difficulty can result in responses such as crying or becoming angry if overwhelmed.

Intense interests

Thinking a lot about particular topics of interests or passions is common particularly for women. Knowing all the facts and details is important.

Repetitive behaviour

Autistic people may adopt repetitive behaviours such as ‘stimming’ for self-regulating. This may include things like rocking, fidgeting or repetitive words or phrasing.

Co-occurring conditions

Many autistic people often develop related disorders after living with autism for some time. This is more common in females, especially with a late diagnosis, if not treated with support as a child.

Autistic females are more likely to experience:

Anxiety
ADHD
Depression
Eating disorders
Obsessive compulsive disorder
Sleep disorders

Masking

Many autistic people spend their entire lives hiding their traits to try and fit into the non-autistic culture. With this comes the need to be liked by others, and to avoid the judgement that comes with being ‘different’.

Autistic people may hide parts of themselves or camouflage their true selves to better fit into neurotypical norms and these around them. This is what we refer to as ‘masking’.

Masking may involve suppressing certain behaviours that some may find comforting or calming, that neurotypical peers may think as strange or unusual. Autistic women learn socially acceptable behaviour by watching television shows, movies, as well as the people around them. This may include copying non-verbal behaviours, and developing complex social scripts to hide social communication challenges.

Over time, autistic people may become more aware of masking, but it begins as an unconscious response to social trauma. For autistic people, masking can become ingrained and can be harmful to their health and wellbeing.

Studies are now beginning to find how detrimental to our mental health masking can be (Bradley et al., 2021; Hull et al., 2019). Autistic people who mask more show increased signs of mental health conditions including anxiety and depression. (Cassidy et al. 2018).

Masking can also be tiring for autistic individuals and can lead to burnout. They try to fit into a world that is not designed for their unique ways of thinking.

Masking also prevents autistic people from developing their true identities. Due to the pressure faced to fit in, this results in the lack of energy to do the things they want to do or behave like their true selves.

Rhiannon experienced masking of her behaviour for most of her lifetime. When she started experiencing bullying in school, she learned that by hiding her true self, she could fit in better.

“You have to mask yourself all the time to fit into an environment that’s not designed for you. The amount of bullying you get as a kid; kids are terrified of going to school, they call in sick, and prefer to not go to school and to be home schooled instead.” says Rhiannon.

Working towards creating an inclusive environment

Rhiannon believes that as a society we are getting there, but it’s not enough.

“Neurotypicals need to have a day in the life of an autistic person and see just what it’s like to be us. We can’t make eye contact; we have to walk around with headphones on.”

Rhiannon would like to see improvement with inclusiveness and believes this needs to start from a young age. Receiving education on how to prevent bullying and intervening early on is important for non-autistic individuals. Schools can contribute by educating children on this topic. Rhiannon believes that by creating a buddy system, this will reduce some of the challenges she faced, growing up in school.

Rhiannon would also like to see inclusion in the community of autistic people. “Inclusion means to be equal to neurotypicals, to be able to do what a neurotypical does, my way.”

Understanding autism, especially in women, is crucial for creating a supportive and inclusive environment. With more research and hearing from autistic people, we can work together to create change and support those around us.

Through Rhiannon’s journey, neurotypical people can better understand how individuals navigate life as an autistic person. By educating ourselves around autism and the signs, we can end stereotypes and reduce the late diagnosis in women. Although a late diagnosis can be challenging, it can provide autistic people with an understanding to embrace who they are.

By advocating for inclusivity, and listening to the voices of autistic individuals, we can create a world where everyone feels accepted and valued for who they are, without feeling like they must mask their true selves.

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