On ASD: Understanding Your Powerful Brain

Words by Sigrid (she/her) 21 QLD

Neurodivergent people have a unique way of perceiving and interacting with the world that brings with it a unique set of strengths and challenges. They are not deficient, but harmful stigmas and copious misconceptions mean they are often perceived as such.

Autism Spectrum Disorder (ASD) is one of the most common types of neurodivergence, and yet it’s shrouded in misinformation. Given ASD diagnosis rates are currently the highest in recorded history, it about time we understand ASD for what it truly is, and why it’s so misunderstood.

Understanding powerful brains

Since the release of the DSM-V in 2013, ASD now describes a range of previously separate developmental differences like Autism and Asperger’s Syndrome. The spectrum of ASD is now differentiated by severity, which describes how much support an individual requires, from a little (level 1) to a lot (level 3).


Them: “Everyone’s a little Autistic, aren’t we all “on the spectrum”?”

Me: WRONG. ASD only affects about 4% of young people. It’s described as a spectrum because every person with ASD is on it, but it does not apply to non-Autistic people. Describing it this way helps us to appreciate that every person with ASD is different, with unique challenges and strengths that can’t be accurately understood using one set of criteria alone.”


While every person with ASD is different (hence the “spectrum”), there are two broad categories of behaviours that are present right from early childhood:

  1. Persistent difficulty with social interactions and communication: these can include difficulty creating or maintaining relationships, lack of appropriate eye-contact, difficulties starting or continuing conversations, and difficulty understanding nonverbal cues.
  2. Persistent restricted and repetitive behaviours and interests: these can include the use of repetitive movements like pacing, rocking or spinning as a coping mechanism (called “stimming”), insistence on routine and sameness, challenges coping with change, avoiding or seeking sensory experiences for emotional regulation, intense “special interests” and intolerance of other topics.

A flawed system

Diagnosing ASD is certainly not simple, because the system is inherently flawed. It has been damaged again and again by misconceptions, held by scientists and the public alike, that have resulted in harmful stigma.


Them: “Girls can’t have autism, only young boys can.”   

Me: WRONG. Women and girls can absolutely have ASD however, they are significantly underdiagnosed. This is because until only recently, it was assumed that ASD presented the exact same in both boys/men and girls/women. Spoiler: it absolutely does not.”


ASD often presents very differently in girls/women. While boys/men with ASD are more likely to process their dysregulation outwardly in tantrums or aggression, girls/women will often internalise this. As a result, girls/women show far higher levels of “masking”, a skill by which people with ASD chronically disguise their behavioural differences to appear “normal”, often by learning to mimic those around them. This takes a huge physical and emotional toll. Imagine how much you’d censor yourself (and how tiring this would be if) a camera crew broadcasted your every move for all of Australia to watch and critique (very The Truman Show-esque). This stress is what daily life feels like for many people with ASD, especially girls/women.

However, because the original DSM was developed from observations of only boys/men, these differences in presentation are poorly understood. Now, ASD is chronically underdiagnosed in girls/women, and many aren’t diagnosed until adulthood.

Sounds familiar?

If you resonate with the information about ASD I’ve shared so far, likely the next question on your brain is, what about diagnosis?

Pursuing a formal ASD diagnosis is a personal choice. For some neurodivergent people, the ASD assessment needed to make a formal diagnosis is simply not affordable, and because of the stigma explained above, sometimes an accurate diagnosis can be difficult to obtain. For these people, self-identification with common traits of neurodivergence can be equally as helpful as a formal diagnosis. Remember, diagnosis or not, your experiences are always valid.

Regardless of whether you are considering formal diagnosis, here are some simple steps you can take to understand more about yourself and ASD:

  1. Explore your own experiences through psychometric tests. These are carefully curated online questionnaires created by mental-health professionals based on common experiences of ASD, which can help you to understand more about how your experiences may relate to ASD. For reliable psychometric tests, see Embrace Autism.
  2. Discuss your experiences and self-observations with family/friends. Not only is support important, but many characteristics of ASD are easiest to observe in early childhood (before masking is learnt), much of which can be difficult to remember yourself.
  3. Discuss your experiences and self-observations with a trusted medical or mental-health professional. Both should have the most up-to-date, in-depth understanding of ASD and can help you understand whether a formal ASD Assessment is the right option for you. They can also provide you a referral for said assessment (although this is not necessary). For more information about services local to you, see Australia’s Autism Connect.

For more on experiences of ASD: You Don’t Seem Autistic


 

Illustration by Aileen. You can find more of her work on Instagram @aileenngstudio

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