What is autism?

There is no one experience of autism.

The clearest definition is that autism – clinically referred to as Autism Spectrum Disorder (ASD) – is a different way of thinking, a neurological developmental difference that changes the way you relate to the environment and people around you.

Put simply, autism changes the way that you see, experience and understand the world.

What is the autism spectrum?

You might have heard people referring to autism as a ‘spectrum’. This just means that there are a number of ways that autism can be experienced.

While people on the autism spectrum share a bunch of similar traits, there are an equal number of differences between them, so the experience of living with autism varies greatly from person to person.

Dr Stephen Shore an autistic professor of special education at Adelphi University, New York, put it best when he said:

“If you have met one person with autism, you have met one person with autism.”

The spectrum can range vastly from people who experience significant difficulties with cognitive function and have no or limited speech, to those who have developed a range of functional skills to support their everyday life.

Some of the key strengths identified in people on the autism spectrum are:

• being detail oriented;
• identifying irregularities;
• being a logical thinker;
• maintaining a focus on a task; and
• seeing things from a different perspective.

If you’re on the autism spectrum you’ll generally enjoy routine and predictability, and might also find yourself focussing on a specific area of interest, or following a particular passion. This can mean that people on the spectrum are highly successful in their chosen careers.

There are of course challenges that people on the autism spectrum face, these can include:

• difficulties in communicating their needs and desires;
• social interaction and interpreting other people’s behaviour;
• processing sensory information; or
• processing cognitive information.

All individuals on the spectrum are able to develop skills, but the order in which they develop skills, the extent to which they develop skills, and how they develop skills, will vary significantly from individual to individual.

What are the signs and characteristics of autism?

The developmental differences, signs and characteristics of autism can vary widely in nature and severity from person to person, and can also develop, change and improve over time.

Age, gender and cognitive ability can also have an impact on how the signs or characteristics of autism present themselves in different people, which is something that should also be considered.

While much of the diagnostic process is related to behavioural attributes, it can be difficult to diagnose autism until they are between 18-20 months. For some, the signs of autism may not become apparent until school years, or adult years when demands exceeds capacity.

Nevertheless, if you feel as though you, your child, or someone you love is on the autism spectrum, you may want to start the diagnostic process.

As autism is a varied spectrum of characteristics it can be difficult to identify if a person is autistic. To help you better understand the signs and characteristics here is a summary of what to look out for, according to the latest diagnostic guidelines, the DSM-5.

Signs in developmental period

• In order to be diagnosed with autism, symptoms must have been present in the early developmental period of a person’s life. It can be difficult to pick up on signs and characteristics of autism for many parents, as raising a child in something that is very new to most people. For parents that already have a child diagnosed with autism, they may be more aware of the signs of autism so they pick up on these earlier. Or for other parents that have an older child that is typically developing, they also may pick up on the signs of autism earlier as they have a child to compare development with. See our signs and checklist for children with autism page for more information.
• For many adults, they many only become aware of the signs or characteristics of autism in relation to their own behaviours later in life. When they then think back over their life they may start to identify how autism may have impacted their life at different moments such as realising that others seemed to know what others were thinking when they found it difficult to read people’s emotions. Many adults with autism have learnt strategies to support their challenges throughout their lifetime. It is therefore important to think about what signs or characteristics were present at a young age when seeking a diagnosis as an adult. See our signs and checklist for adults with autism page for more information.

To be diagnosed with an Autism Spectrum Disorder an individual does not need to have difficulties in all areas but rather must meet a specific combination of criteria across two domains. It is important to keep in mind that this is just a short summary, and that only trained, accredited professionals can make an autism diagnosis.

Domain A: Social communication and social interaction

Differences or challenges relating to language and social communication and social interaction across multiple contexts, both currently or historically. These include difficulty or differences in:

• Social-emotional communication and personal exchanges.
• Non-verbal communicative behaviours used for social interaction.
• Developing, maintaining and understanding relationships.

Domain B: Repetitive or restricted behaviour, interests or activities

Restricted, repetitive patterns of behaviour, interests or activities in at least two of the following:

• Repetitive motor movements, use of objects, or speech.
• Insistence on things being the same, inflexible and insistent on routine, or ritualised patterns of verbal or non-verbal behaviour.
• Highly restricted, fixated interests that are uncommonly intense or focussed.
• Extremely reactive or not reactive at all to sensory input, or an unusual interest in sensory aspects of the environment.

Functional impact of autism on a person

For some people autism can impact all areas of life significantly, while for others it can impact certain aspects of life to a lesser degree. Because of this, autism is referred to as a “spectrum” and diagnosed based on both signs and characteristics, and the impact that these differences may have on a person’s life over time

If the signs or characteristics shown by a person are causing significant challenges in social, personal, family, occupational or other important areas of a person’s life then it is likely that the person will be diagnosed as having autism, or being on the autism spectrum.

If the signs and characteristics are not having a major impact on a person’s life or relationships, and they are able to function in all social and interpersonal settings, it’s unlikely that autism will be diagnosed.

The specific behaviours that capture the criteria listed above and the degree to which they affect daily life differ between individuals and can be influenced by factors such as age, learning and available supports. Due to this variability, the DSM5 provides severity levels 1 to 3 for each of the two domains to reflect the degree to which the behaviours they capture interfere in the individual’s daily life requiring support.

NOTE: It is important to remember that these severity levels are a snapshot of functioning at the time of diagnosis and may change over time as skills develop and/or demands change.

These three levels, and the characteristics and support needs that define them, are listed in the DSM-5 as:

• Level 1: “Requiring support”
• Level 2: “Requiring substantial support”
• Level 3: “Requiring very substantial support”

While Asperger syndrome and pervasive developmental disorder not otherwise specified (PDD-NOS) are no longer diagnosed as a separate disorders under the current diagnostic criteria (DSM-5), a person with a pre-existing diagnosis under the previous diagnostic criteria (DSM 4) can still use that diagnosis.

What is Asperger’s syndrome?

In 1994 Asperger’s Syndrome appeared as a separate presentation of a pervasive developmental disorder in standard diagnostic manuals, characterised by many as a “milder type” of autism.

The key characteristics of Asperger syndrome identified at the time were:

• Difficulties with social interaction and social communication
• Restricted and repetitive behaviours
• No intellectual disability
• No delay in verbal speech development

However, the idea that Asperger’s is milder than autism has proven to be problematic, because it implies that living with Asperger’s is “less challenging” than living with autism.

In May 2013, the diagnostic criteria for autism changed with the release of the latest diagnostic manual (the DSM 5).

Since then “Autistic Disorder” and “Asperger’s syndrome” are no longer differentiated as separate presentation of pervasive developmental disorders, but are now included under the single diagnosis of Autism Spectrum Disorder (ASD) or referred to as autism or the autism spectrum.

Positive self-identity and self esteem

While a diagnosis of autism can lead to a number of challenges in a person’s life, and for those around them, people with autism can also achieve great things, for themselves, their community and our world.

For some people a diagnosis of autism can enhance their self-identity and further develop their awareness of what makes them unique –  autism becomes a positive part of their identity.

Many successful people in our community are autistic, some significant discoveries, developments and achievements have been made by people with autism, and without this neurodiversity in our society we certainly would not have achieved some of our greatest leaps in understanding about our culture, societies, communities and our world.

The neurodiversity movement

There is a movement gaining momentum around the world, particularly among adults on the autism spectrum, who celebrate their neurological differences.

The term was first coined in the mid-1900s by the Australian Sociologist, Judy Singer who recognised that “neurologically diverse (people) needed a movement of their own”, and that voicing “differences in neurology should be recognised and respected.”

What is the prevalence of autism?

The exact prevalence of autism in Australia and internationally is unknown.

The Australian Bureau of Statistics (ABS) reports that there were 205,200 Australians with autism in 2018, which is around 1% of the population or 1 in 100.

Internationally this rate varies significantly, from 1 person in every 59 people in the USA, to the average prevalence across Asia, Europe, and North America is between one and two percent.

Statistics also show that:

• the number of Australians diagnosed with autism increased by 42% between 2012 and 2015;
• three out of four people diagnosed with autism are young people, aged between 5 and 24 years; and
• 1-2 out of 4 Australians diagnosed with autism are female.

While the reported prevalence of autism varies around the world, there has been a clear increase in the number of people diagnosed on the autism spectrum in recent years, but this doesn’t necessarily suggest that there are more autistic people in the world than there were ten or twenty years ago.

Evidence suggests that the increase is the result of a number of cultural and clinical factors, including social influences driving greater awareness of autism, and improved diagnostic procedures and changes in diagnostic criteria allowing more people to access a diagnosis.

According to Professor Whitehouse, from Australia’s Autism CRC, research shows the majority of the increase in autism prevalence over this period was due to an increase in diagnosing children with less severe behaviours.

“We now recognise that the condition presents along a spectrum. It is critical that we are all aware of the full range of presentations, as well as the considerable strengths that individuals on the spectrum bring to our community,” Professor Whitehouse said.

Autism in australia

Autism is a nurological difference, a different way of thinking. The word ‘spectrum’ reflects the diversity of people with autism and how characteristics present. There is not one single cause of autism. The following is an overview of autism in Australia at the time of publication.

Sources:

• Heylens, G., Aspeslagh, L., Dierickx, J. et al. J Autism Dev Disord (2018) 48: 2217.
• Disability, Ageing and Carers, Australia: Summary of Findings (2015) ABS.
• Australian National Survey of Mental Health and Wellbeing (2007) ABS.
• DSM-5

What is the history of autism?

The understanding of autism has developed over a number of decades. While the term ‘autism’ was defined by Kanner, there is varying evidence that other professionals, including Grunya Efimovna Sukhareva and Paul Bleuler, had recognised the unique presentation of symptoms much earlier than this. Since the 1940’s the diagnostic criteria has evolved and shifted as we learn more but now autism is widely understood as a spectrum of conditions with wide-ranging degrees of impairment

1943

Leo Kanner, child psychiatrist at Johns Hopkins University School of Medicine in Baltimore, MD, USA, wrote a seminal article in which he described 11 children in his clinic without the social instinct to orient towards other people. He described these children as mostly focused on, or even obsessed with objects, a need for sameness and a “resistance to unexpected change”. To give a name to this new psychiatric condition, Kanner coined the term “infantile autism”. The word autism comes from the Greek word “autos,” which means “self.”

1944

A year later, Hans Asperger a paediatrician, at the University of Vienna in Austria, wrote an article describing a group of children in his clinic who shared many of the same features but on a wider spectrum than Kanner’s description. Asperger had already designed a school for these children that suited their differently wired cognitive style, and playing to their strengths rather than focusing on their difficulties. Asperger’s group of patients were diverse, ranging from one child who was mute to another child who was articulate to the point of pedantry; from the boy who flapped his hands repetitively to the child who obsessively collected minutiae about astronomy. Asperger coined a term to describe these conditions: autistic psychopathy. He often referred to individuals with Asperger’s as ‘little professors’. Unfortunately, Asperger’s discoveries were made during the Nazi regime in Austria and for nearly 40 years the article remained untranslated and his discoveries virtually unknown.

1981

Lorna Wing, child psychiatrist at the UK’s Institute of Psychiatry in London published (for the first time in English) an article that referred to autism as a continuum which included Asperger syndrome, in recognition of Hans Asperger’s work.

1989

Asperger syndrome was first diagnosed in children in South Australia by Autism SA.

1994

Asperger disorder was first included in the DSM-4 (Diagnostic and Statistical Manual of Mental Disorders, 4th Edition) published by the American Psychiatric Association (APA). Other diagnoses under the Pervasive Developmental Disorder umbrella included Autistic Disorder, PDD-NOS, Childhood Disintegrative Disorder and Asperger’s Disorder.

1996

Lorna Wing coined the phrase Autistic Spectrum Disorder (ASD) to describe a range of neurodevelopmental differences, including autism and Asperger syndrome. Children diagnosed with ASD needed to have met criteria for difficulties in communication, social interaction and restricted and repetitive patterns of behaviours, interests or activities. A complete diagnosis relied on these characteristics being experienced from early childhood and at a level which limited or impaired daily functioning.

2013

The release of the updated DSM-5 manual redefined the Autism Spectrum Disorder to encompass the previous diagnoses of autism, Asperger syndrome, pervasive developmental disorder not otherwise specified (PDD-NOS). The new definition no longer includes communication as a separate criterion, but incorporates it in the other two domains. Diagnosis is made on the person meeting the required criteria in two areas: social communication and social interaction, and restricted and repetitive behaviour. If a person has been diagnosed previously with Asperger syndrome, this generally is maintained.

What causes autism?

Significant research is being conducted all over the world into the causes of autism, and while studies have suggested a number of possible associations and correlations, the causes of autism are still largely unknown.

While research into the causes of autism is continuously evolving, we do know that it’s likely there is not one single cause of autism, but rather autism is heterogeneous, meaning there are a number of causes for autism. Research also has shown that there is likely to be a number of contributing factors that lead to the neurological differences we recognise as autism or the autism spectrum.

Genetics

Researchers have found many possible genes that might play a role in the development of autism, leading to a belief that autism is in fact a number of different conditions that all have relatively similar behavioural signs and characteristics.

Research supports that for groups of people with autism, there are genetic differences across a range of genes or specific genes that cause neurological differences, which means that they display autistic characteristics.

Research into family genetics and the prevalence of autism has supported this finding, showing that if there is one person in the family diagnosed with autism, it can increase the likelihood that others in the family will also be on the autism spectrum, at the following rates:

• Aunts, uncles, cousins (2-3%)
• Siblings and non-identical twins (10%)
• Identical twins 80% if one is diagnosed

For some groups of people with autism, it appears that the genes are passed on through families directly, for others genes passed on combine are likely to cause neurological differences resulting in autism, while for other individuals there may be genetic differences that have not been passed on, but have arisen during fetal development.

For a number of autistic people there are clear genetic variations that have shown to be the cause of their neurological difference, while for many other people diagnosed with autism there appears to be no significant genetic differences.

Ultimately this means that while genetics seems to be the clear cause for some types of autism, they are not the cause of everyone’s autism.

Other possible contributing factors that are currently being researched because of their ability to influence neurological development include:

• Lower birth weight, and premature birth
• Advanced paternal age at time of conception, particularly for males
• Long term, Vitamin D deficiencies in utero
• Increased testosterone during utero development

Research has identified that every individual on the autism spectrum has different neurology to each other, further supporting the notion that autism is a spectrum of conditions. Some areas that research is looking at includes:

• Under-connectivity and over-connectivity: some individuals with autism may have under-connectivity in long-range connections, but over-connectivity in short-range connections.
• Head circumference: A systematic review and meta-analysis conducted in 2016 showed that ‘head circumference was significantly larger in autistic compared to control individuals’.

While there have been a range of research studies into these areas, more research is needed.

The facts about autism and common misconceptions

Are you finding that well-meaning family and friends, media commentators even some health professionals are making you more concerned and confused about your own or your child’s autism or suspected autism?

Misinformation and mixed messages can lead to feelings of guilt and isolation and can work against a proactive diagnosis and support program. Although the global understanding of autism is constantly evolving, here are some of the commonly understood facts, to help you put some of these misconceptions about autism to bed.

What are the causes of autism?

It’s natural to want to know what causes autism, however it is likely that there is not one single cause. While genetic differences are known to cause some types of autism, the causes of autism are largely unknown.

We do know that autism is a neurobiological difference, meaning that the brain processes information differently for people with autism, than it does for people who do not have autism.

We also know that parenting styles do not cause a child to develop autism.

Autism is not caused by vaccinations during or before pregnancy, and the falsely-reported link between the measles-mumps-rubella (MMR) immunisation and autism has been retracted from the paper it was published in, and completely discredited by the research, scientific and medical community.

For more information about the current studies being undertaken into the causes of autism, visit our what causes autism section.

How is autism diagnosed?

Fortunately, the way autism is diagnosed has changed and improved over the last 80 years.

We now recognise a wider range of signs and characteristics as forming part of the autism spectrum.

As awareness increases, parents and professionals are getting better at identifying early signs of autism and are more likely to seek an autism assessment.

This explains why people think autism is more prevalent today than it was ten or twenty years ago.

For more information about diagnosis go to our How to get an autism diagnosis page.

Do people with autism all look and act the same?

People with autism are part of the diversity that is humanity, where no-one person is the same as another.

Research completed as far back as the 1940s revealed that autism is a spectrum of behaviours and skills.

People with autism have difficulty with social communication and social interaction and can act in a restricted and repetitive way but how this is expressed varies significantly.

For more information about the behaviours relating to autism, visit our signs and characteristics page.

Are people with autism physically or intellectually disabled?

People with autism do not look different to other people and are usually physically healthy.

Autism is not an intellectual disability although some people with autism may also be diagnosed with an intellectual disability.

Do people with autism communicate?

Everyone communicates. Many people with autism communicate using speech. For some people the way speech sounds may be a bit different including using a mono tone, very formal language or use an accent. For others, verbal speech might be delayed or many not develop.  It is important to develop ways that a person can communicate their needs to those around them.

Some people use alternative communication systems such as sign language, picture exchange systems, or assistive technology to communicate with those around them.

Do people with autism have emotions?

People with autism feel the same emotions as their parents, family or friends – they can just find it more difficult to express feelings sometimes, or they might express and feel them in  different ways.

Some people may shout or hit out when distressed but this is usually a reaction or last resort when there is a difficulty in communicating.

It is common for people with autism to have difficulty recognising and interpreting the emotions of others, but they do develop strong bonds with important people in their lives such as parents and siblings like everyone else.

For some people, typical means of showing affection can be more difficult, such as maintaining eye gaze and physical contact.

For more information about the behaviours relating to autism, visit our signs and characteristics page.

Do people with autism make friends?

Most people with autism often do want to have friends, but have difficulty engaging socially with others or knowing how to recognise and respond to the intentions and emotions of others.

The social understanding and skills required to form friendships often need to be taught explicitly to children with autism. Planned activities around shared interests are often the key to supporting friendships.

For more information about the behaviours relating to autism, visit our signs and characteristics page.

Can autism be cured?

Autism can no more be “cured” than eye colour, pitch of voice, your height or the shape of your feet.

Early diagnosis and intervention can help to teach children skills necessary for a full, productive and satisfying life.

People who say they or their children were ‘cured’ may have been particularly successful in acquiring skills which enable them to function more effectively through their everyday life.

Many people who have a diagnosis of autism are concerned about the concept of “curing” autism, as they feel it is their autism that makes them, them. Many people contribute their successes to being able to think in a totally different way then the vast majority of people that are developmentally typical.

This celebratory perception of autism led by people on the autism spectrum is called the neurodiversity movement.

Broaching the subject of autism

With an increased awareness of autism in our society you may start to recognise the signs and characteristics of people you know or love as “on the spectrum”.

While it’s exciting that people are becoming more aware of the full spectrum of autism, it’s important for people to also be sensitive about the language they use surrounding it, and when approaching people who may be on the autism spectrum.

Before you raise the subject of autism with a person who may be autistic (or their families), it’s important to consider the following:

• Why do you believe it’s important to raise the subject with a person?
• What are the potential positive outcomes e.g. support and understanding, or improved self-awareness and identity?
• What are the potential negatives e.g. denial, confusion, a recognition of a setback in the person’s development.
• You may need to be prepared to accept a negative response and to be supportive and non-judgemental.
• Who might be the best person to raise the subject – for instance it may be better coming from a family member or trusted friend.
• What tone will you use? Certainly, you will need to be respectful and sensitive.
• Avoid giving specific advice
• Find out about support services that might be helpful before having the conversation.
• Remember that you are NOT in a position to diagnose. You can raise the topic, and suggest the person or family member seeks more information on autism from a recognised and qualified professional.

To find out more information about the autism spectrum, see our signs and characteristics page.