The Disability Support Guide to discussing autism spectrum disorder behaviour

Key points:

• Autism Spectrum Australia revised its autism prevalence rates from one in 100 during 2014 to an estimated 1 in 70 people in Australia on the autism spectrum by 2018

• The revised rate is an estimated 40 percent increase of approximately 353,880 people

• There are now over 313,000 National Disability Insurance Scheme participants under the age of 18, accounting for more than half the Scheme population and a fifth of Scheme costs — 75 percent of whom have a primary disability of autism or developmental delay

 

This edition of Disability Support Guide contains a wide range of terms and definitions that will assist people living with autism spectrum disorder, their parents, friends, carers and support workers when discussing associated behaviours.

In December, the National Disability Insurance Scheme Review proposed 26 recommendations and 139 actions to improve the lives of participants and ensure that the NDIS will be sustainable for people with disability.

 

The Australian Government is set to respond to the 329-page report in 2024 and potentially address the removal of ‘access lists,’ which have prevented people with psychosocial disability or those who live with a mental health condition, from receiving NDIS support — yet, make others automatically eligible.

 

If implemented, this change could impact the eligibility of a person living with an autism spectrum disorder throughout a five-year transitional period, as the prevalence of ASD in Australia has continued to increase and analysts have reported a potential link between the national cost of the NDIS and ASD eligibility.

 

Due to Australia’s sharp increase in the rate of people living with an ASD, compared to the prevalence rate of ASD in other countries, advocates have called for greater national awareness of autism spectrum disorder.

 

This Disability Support Guide is intended to clarify behaviour that is commonly associated with people who have been diagnosed with autism spectrum disorder and define terms that are used in the neurodivergent or disability community.

Definition of terms

Anxiety

People with autism spectrum disorder may experience anxiety, which is a sense of stress, uncertainty and discomfort. This may be brought on through sensory overload, social interaction, disruptions in day-to-day life or an overwhelming pressure to overcome symptoms of their ASD.

Both neurotypical and neurodivergent people can experience anxiety and may not experience anxiety to a severe extent that would be symptomatic of an anxiety disorder, however, certain triggers may be more likely to induce anxiety in someone living with an ASD.

 

ASD

‘ASD’ is an acronym for autism spectrum disorder, which encompasses a wide variety of different autism-related diagnoses, such as ‘autistic disorder,’ ‘Asperger’s syndrome’ and ‘pervasive developmental disorder — not otherwise specified.’

The aforementioned subsets of ASD are widely considered to be outdated and phrases, such as ‘an autistic,’ ‘autistic person’ and ‘person with autism’ may be considered inappropriate or derogatory.

When speaking to a person who lives with ASD, it is important to clarify their preferred terminology and respectfully adhere to their preferred language.

 

Asperger’s syndrome

Asperger’s syndrome is generally considered to be an outdated diagnosis for people with neurodevelopmental disability on the autism spectrum. People with Asperger’s syndrome were previously categorised as ‘high-functioning’ members of the autism spectrum and were diagnosed based on their difficulty with socialisation and self-expression.

Since approximately 2013, people with Asperger’s syndrome are now considered to fall under the umbrella of autism spectrum disorder.

Some people who were diagnosed with Asperger’s syndrome may prefer to retain the label and identify with the diagnosis when speaking about their symptoms with others. Similarly, the term ‘aspie’ was adopted by people with Asperger’s syndrome, as a short-hand way to express their lived experience with others in the community.

 

Compulsions

Compulsions are a common symptom of many different psychosocial disabilities, anxiety disorders — such as obsessive-compulsive disorder — and attention-deficit disorder.

Compulsions can materialise in the form of routine among people who live with ASD, as they may be accustomed to doing a certain activity at a certain time or acting on impulse, even if a situation may not require them to do so.

Compulsions can manifest in many different ways for people with ASD and are not indicative of a person’s intellectual capacity or malicious intent. People living with ASD may not recognise how others perceive their compulsions in a social context.

 

Disability

The legal definition of ‘disability,’ as outlined in the Disability Discrimination Act 1992, is available online through the Attorney-General’s Department website.

 

Early intervention

Providing high-quality early intervention for a child with ASD in their early years is critical to achieving the best outcomes. Effective early intervention should be tailored to your child and family’s needs and include evidence-based strategies and supports.

Under the National Disability Insurance Scheme, the approach that supports children up to the age of six who have ASD is called ‘Early Childhood Early Intervention.’

 

Eye contact

People with ASD may experience difficulty or discomfort with making and maintaining eye contact during social interactions.

 

Flat affect

People with ASD may experience difficulty modulating their voice or facially expressing their internal feelings, which is known as a ‘flat affect.’

People who live with psychosocial disability, such as schizophrenia, may also be assessed for having a flat affect.

 

Food aversions

People with ASD may experience an aversion to or immense discomfort with trying new foods, particularly if they appear to be texturally, visually or culturally unfamiliar. Neurotypical carers, family or friends may perceive this disruption to familiarity and social anxiety for a person with ASD as ‘fussiness,’ without the added context of sensory overload or panic.

 

Hypersensitivity vs Hyposensitivity

People with autism spectrum disorder may present with hypersensitivity which can occur in countless situations and may be increased by stress. For example, a child who finds the sound of a train to be overwhelming may place their hands over their ears until the sound subsides or they are removed from the situation. 

However, a different individual with autism spectrum disorder may not find this distressing and may enjoy the louder sound, perhaps even adding to the sound by clapping their hands. This second example could be explained by the child exhibiting hyposensitivity. 

This is not a trait exclusively associated with children; adults with autism spectrum disorder may also demonstrate such behaviours. 

Additionally, hypersensitivity and hyposensitivity may also include other aspects such as texture, light and smell.

 

Terms related to hypersensitivity and hyposensitivity include:

• Tactile sensitivity

• Sensory overload

 

Masking

People with autism spectrum disorder may be described as exhibiting ‘masking’ when trying to mimic neurotypical people in social situations. Forcing eye contact, rehearsing conversations in anticipation of a social situation and mimicking gestures of the opposite party are examples of ‘masking.’ An individual with autism spectrum disorder may ‘mask’ to ‘fit in’ with their peers, even if this makes them feel incredibly uncomfortable. 

While the action of ‘masking’ may be perceived as positive by some people to increase social acceptance, the negative repercussions of an individual imitating such behaviour can be exhausting and negatively affect the mental health of the ‘masker.’  

 

Non-verbal

In their diagnosis, some people with autism spectrum disorder may be ‘non-verbal’, which means they use no spoken words to communicate. There is some confusion with this term as it’s not the same as not communicating at all. People who are ‘non-verbal’ may use different methods of communication such as sounds, gestures and/or sign language and communication aids. Any of these methods fall under a larger category which is called Augmentative and Alternative Communication (AAC). 

 

Occupational therapy

Health professionals work in this field to assist people including those with autism spectrum disorder to increase their participation through various assessments and interventions. This may include adapting cutlery to make it easier for someone to hold during meal times.

 

Repetition

As with many traits associated with autism spectrum disorder, the types of repetition vary between individuals. This may include lining up objects constantly, rewatching the same movie on repeat for days or weeks and saying the same word over and over (echolalia).

Repetition is also related to ‘special interests’ whereby the individual has a fixation on certain topics such as trains, a certain cartoon character, etc, regardless of their age. 

 

Ritual

As the term implies, rituals are completed and must be done the same way every time. Examples may include:

• asking and requiring the same answer, repeatedly;
• dressing and redressing in the same clothes;
• drying oneself with a towel in the same motion and order each time.

While there may be various reasons for rituals, depending on the individual, one is that people with autism spectrum disorder may strongly dislike change or unpredictability. By ensuring that certain daily tasks are completed with utter certainty through order, people with autism may feel more in-control and able to manage their anxiety or stress more easily. 

 

Speech pathology

Like occupational therapists, speech pathologists work with individuals to help improve their communication, whether it be verbal or non-verbal. This can include introducing their clients to augmentative and alternative communication, improving articulation of sounds and improving language use, depending on the client’s needs.

Stimming

A term often used to describe behaviours in people with autism spectrum disorder is called ‘stimming.’ Examples of this include rubbing hands together, arm-flapping, rocking and headbanging. While this list is far from exhaustive, people with autism spectrum disorder may engage in such behaviours for many reasons, including as a self-regulating mechanism, according to one study. 

Even people without autism spectrum disorder may stim at times through actions like finger tapping and foot twirling. 

 

Tantrum vs meltdown

The difference between a tantrum and a meltdown is that a tantrum is often utilised to reach an end goal, such as not going to bed when told, whereas a meltdown is an involuntary response to stimuli such as a hypersensitivity or a hyposensitivity, e.g. if a sound is too loud or too quiet, respectively. While meltdown behaviours and durations can vary between individuals, one example is:

1. Someone talking too loudly on the phone (with other stressors mounting, such as loud music and traffic)
2. Individual feels like they need to escape: leaving the area quickly
3. Individual holds hands up to ears to reduce sound and becomes rigid, non-verbal, crying, unable to return to original area

It’s important to note that both adults and children can have meltdowns.

 

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