Digital Art by Hanlie Wentzel
I recently became aware of the concept of the neurodivergent version of “Autistic Anxiety” versus it’s more neurotypical cousin “GAD: Generalised Anxiety Disorder”. Both may present with similar symptoms and look alike in appearance but they come from 2 very different places and therefore need to be understood and supported differently. Autistic Anxiety is often misunderstood and misdiagnosed as Depression, although it may co-occur with Depression and GAD since these co-occuring conditions often overlap.
Image credit: @SensoryStories https://www.nicolefilipponeauthor.com/
Like all autistic people I struggle with high levels of anxiety, problems with executive functioning, exaggerated threat response, mood dysregulation and sensory dysregulation, on a daily basis. But it is masked and mostly invisible to others, in fact people often comment on how calm and peaceful my personality is. Little do they know about the internal battle and the focused effort I put into achieving a mindstate of (the ever elusive) calm groundedness. Most days I succeed in wrestling the black dog down into submission. But often I don’t succeed and it may lead to a shutdown, a meltdown or recurring autistic burnout over time. I’ve heard it being compared to feeling like you are digging yourself out of a mountain and I think that is a very apt description.
To quote my fabulous autistic teen, Ruby, the main difference between Autistic Anxiety and GAD seems to be that:
1. Autistic Anxiety’s origin is external. It comes from living in a predominantly neurotypical environment that seems to mostly be at odds with our neurodivergent nature. Add to that years of ableism and autistic trauma, gaslighting, sensory overload and dysregulation, misdiagnosis and mistreatment. Anyone would feel a little anxious and the exaggerated threat response comes from a real threat in our environment and serves to protect us from harm. Therefore it is not dysfunctional but actually very functional. It can’t be fixed but it can be relieved and supported. To address the problem the main focus should be the environment.
2. GAD’S origin is internal. It is thoughts and feelings about a perceived threat that is not congruent with reality and grounded in the material world. It may also be caused by past trauma but the threat response does not match the threat or perceived threat. Therefore it is dysfunctional or a mental illness. It can be treated and in many cases recovered from. To address the problem the main focus should be the person.
Let’s hear what other autistic voices have to say about this topic:
Uncertainty, change, and interpersonal conflict. My personal kryptonite. A potent trio that has the ability to sap my strength and send me spiralling into an anxiety-ridden tailspin. Like many other Neurodivergent thinkers, anxiety has become a key part of my life but I hope that by stepping into the shadows to understand my kryptonite I will be able to tackle the anxiety that threatens to unhinge me. – Helen Needham from Me.Decoded
Why might autistic people experience anxiety?
Even though it is not part of the autism diagnostic criteria, many autistic people experience high levels of anxiety.
Research varies but the consensus suggests that it might be common for around 40-50% of autistic people to receive a clinical diagnosis of anxiety:
•A recent National Autistic Society survey found 47% of autistic people fall into the severe anxiety category based on GAD diagnostic criteria. •A recent National Autistic Society survey found 59% of autistic people said anxiety had a high impact on their ability to get on with life.
Reasons that autistic people may experience anxiety include:
○ A change to routine, particularly an unexpected change. ○ Difficulty to identify, understand, verbalize and regulate emotions (also known as Alexithymia). This often co-occur with high empathy, also referred to as double empathy, which adds to our emotional burden and mood dysregulation. ○ Difficult social situations and sensory overwhelm in environments can increase stress and increase anxiety for autistic people. ○ Being misunderstood and/or not accepted by non-autistic people. ○ To ‘fit in’ and not be seen as different, autistic people might mask or camouflage. This can increase anxiety and have a negative effect on their mental health.
Experiencing such high levels of anxiety can lead to exhaustion and meltdowns. It may also lead to autistic fatigue and burnout. This can significantly affect a person’s quality of life, such as their physical and mental health, work/school and social life.
How do I know if I am anxious?
Everyone has feelings of anxiety at some point in their life. You may feel worried and anxious about a change to your daily life, sitting an exam, or a job interview.
Signs that you might be anxious include:
○ feeling restless or worried ○ a churning feeling in your stomach ○ a fast, thumping or irregular heartbeat ○ faster breathing ○ sweating or hot flushes ○ nausea (feeling sick) ○ problems sleeping ○ panic attacks.
If your anxiety is constant, hard to control and affecting your everyday life, then you may have Generalised Anxiety Disorder (GAD). Read more about anxiety and GAD on the NHS website: https://www.nhs.uk/conditions/generalised-anxiety-disorder/
What is Anxiety
“Anxiety at appropriate levels is important for adaptive functioning. There are many environmental hazards that must be avoided and these are often learned through the process of anxiety induction. The resultant anxiety response is learned through the association of certain stimuli with unpleasant consequences.” (from “Autism and the Physiology of Stress and Anxiety”, Romanczyk and Gillis)
Anxiety, like fear, protects us from danger. It raises our guard and makes us wary. In this way, it’s healthy. Without it, we might be less motivated to get an education, to work, to care for our loved ones and ourselves.
Anxiety is a state of worry, concern or dread related to something that hasn’t yet happened and may, in fact, never happen.
When you feel anxious about an upcoming event, you spend more time thinking about it and preparing for it than you would for a more mundane activity. You examine the possible consequences and give extra attention to your actions to ensure the best possible outcome. Anxiety heightens your awareness; heightened awareness sharpens your focus, increasing your safety.
An appropriate level of anxiety is one that is manageable. I feel nervous in the days before giving an important Powerpoint presentation, but I manage my anxiety and complete the presentation to the best of my ability.
An inappropriate level of anxiety is one that prevents a person from completing a necessary or desired activity. For example, if I got so anxious about the presentation that I ended up sick in bed, fainted in the conference room, or lied to avoid presenting.
Not all anxiety is healthy and it’s important to recognize where your anxiety falls on the healthy/unhealthy continuum.
The Function of Social Anxiety in ASD
So that’s how anxiety works in the typical brain. But what about in the autistic brain?
From childhood, autistic people know that we’re missing key information in social situations. We often have difficulty interpreting facial expressions, tone of voice, body language, and non-concrete speech. Some people also struggle with auditory processing and sensory overload in public or group settings.
The results of our social communication challenges can range from inconvenient (missing a joke or not following a conversation) to dangerous (being bullied, taken advantage of or assaulted).
There are also negative health consequences–many autistic people need hours or days to physically recover from prolonged or intense social interaction.
Over time, “through the process of anxiety induction,” we realize that certain social situations are “environmental hazards that must be avoided” (as Romanczyk and Gillis described). In other words, because of a very real hazard, we develop anxiety that for us has a very real cause. It isn’t disordered. It’s a defense mechanism, developed through “the association of certain stimuli with unpleasant consequences.”
Social anxiety is, therefore, not only “important for adaptive functioning” in autistic people, it’s essential.
Autistic social anxiety is not the same as neurotypical social anxiety. If a person with intact social communication abilities has severe anxiety about social situations, then they have a disorder because their fear is irrational.
When a person with impaired social communication abilities has anxiety about social situations, they are like a poor swimmer who is anxious about boarding a boat. The perceived risk is real and rational.
If fear is a red light–a glowing “stop” signal in our brain–then anxiety is a yellow light. It’s the feeling that says, “slow down, caution, stop and pause a moment before continuing down this road.”
We should heed this feeling, not cure ourselves of it.
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