Autism spectrum disorder

Learn about autism spectrum disorder, diagnosis and support options.
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Found in: Mental Health Conditions
Date: September 2022

About autism spectrum disorders

Autism spectrum disorder (ASD) is a life-long condition that influences the way people make sense of the world.

People with ASD will communicate, interact, behave and learn in ways that are different from people without ASD (who are sometimes referred to as “neurotypical” - those with ASD can be referred to as “neurodivergent”). As a result, for those with ASD, everyday situations that neurotypical people may find straightforward can be difficult to make sense of.

Because there is such diversity in the way that autistic traits present, the term “spectrum” – meaning a space between two points – has been adopted, and traits can be thought of as falling somewhere on the spectrum.

Some people on the autism spectrum may have significant learning disabilities, while others may be highly skilled academically. Some may present with significant difficulties with social communication, which is often noticed early on in development, while others may present with social difficulties that are more subtle, and therefore not recognised until later on in life (if at all).

A person with ASD may have certain traits that fall to one end of the spectrum (such as excellent communication skills) and others that fall towards the opposite end (such as high sensitivity to stimuli).

Some people with ASD need a lot of help in their daily lives and a high level of appropriate support. Others may benefit simply from understanding their condition and identifying both their strengths and what situations may cause challenges.

We use the term “ASD” in this article, but you may prefer other terms, such as “person with autism” or “autistic person”. In te reo Māori, the word for autism is “takiwātanga”, meaning “my own time and space”.

Who typically receives a diagnosis of autism spectrum disorder?

ASD is often noticed from an early age, from birth to three years old. If you suspect your child has ASD, early identification is important to ensure they receive appropriate assessment and support as soon as possible.

Special education programmes and support of family/whānau play an important part in helping the child achieve their full potential as they grow into teenagers and adults.

For those who are not diagnosed at an early age, difficulties often become more apparent during adolescence and early adulthood. Social difficulties, stress related to sensory sensitivities and difficulties with achieving grades that accurately reflect a person’s level of intelligence can all contribute to an increase in distress for a young person with undiagnosed ASD. As a result, they may report an increase in anxiety and mood difficulties.

What causes ASD?

Even though a lot of research into ASD has gone on around the world, the exact cause is still unknown. It’s known that genes somehow play a part, with certain gene patterns making it more likely that a child will have ASD. Vaccinations, environmental toxins and diet are not causes of ASD.

Studies have also shown that people with ASD have a greater chance of having a sibling or parent with ASD as well. Sometimes parents or siblings of someone with ASD may not meet criteria for an ASD diagnosis, but show some similar traits and thinking styles. 

Symptoms

Signs to look for (symptoms)

Signs of ASD can vary widely from one person to another. There is no single feature that defines ASD. An overall picture or pattern of behaviour needs to be built, because a child with ASD may occasionally behave just like any other child. 

Likewise, both children and adults with ASD have often learnt to mask their discomfort and do things they are “supposed to”, such as make eye contact. It’s important to understand what happens most of the time, not what happens occasionally, and to be aware of when the person is enduring discomfort in order to behave in a certain way.

Key areas of difference for those experiencing ASD are in the ways they communicate and interact with others, and, for children, the way they play and engage in make believe.

A child with ASD will have some or all of the following behaviours:

  • prefer not to be held or cuddled, or cuddle only very occasionally
  • appear to be unaware when people talk to them, but respond to other sounds
  • have delayed language skills for their age and use language in unusual ways, such as speaking very formally or repeating words
  • have an incredible memory for words and phrases they have heard
  • not look at objects when another person points to them
  • prefer to play alone, and not be drawn to playing with others
  • not make eye contact
  • ignore greetings, such as hello or goodbye
  • not respond to children’s games such as peek-a-boo or hide and seek
  • not play “pretend” games (for example, pretending to “feed” a doll)
  • display intense interest in certain things – these may be age-appropriate (e.g. dinosaurs, toy cars) or unusual for their age (e.g. the mechanics of toys or cars, or seemingly random topics)
  • react strongly to loud noises or dislike intensely some tastes, textures or smells
  • have difficulties with fine motor skills or coordination.

Teenagers or adults with ASD may:

  • repeat actions over and over again
  • find direct eye contact uncomfortable
  • have difficulty displaying appropriate emotions through facial expressions
  • prefer to be alone and find social situations draining or, alternatively, want to engage in social relationships but find it difficult to do so, or find that friendships often end unexpectedly
  • have trouble understanding other people’s feelings or responding to their expressions or emotions – this often means that they will respond inappropriately, apparently missing the “tone” of a conversation
  • have a very set routine and feel excessive distress at any changes to their routine 
  • prefer things to be done or placed in a very particular way
  • appear to get stuck doing the same thing over and over, and find it difficult to switch focus to something else
  • have some intense, excessive interests – sometimes this is in specific, unusual topics, and other times it is an age-typical topic but the interest is more intense than it is for others
  • have unusual movement patterns (such as hand flapping or walking on toes) – this is known as “stimming” and is a more noticeable version of the behaviours that all people do at times to stimulate their senses, such as foot-tapping or hair-twirling 
  • have trouble expressing their needs using typical words or motions
  • not respond to or appear to understand requests
  • have “meltdowns” when in a situation where there are a lot of social demands, or sensory input, or at the end of the day when they feel that their energy has been drained
  • find it difficult to understand or follow instructions and guidelines of assessments, or to organise themselves effectively to work on a task – as a result, their marks at school may not reflect their level of intelligence.

ASD in women, girls and those assigned female at birth

Historically, it was thought that girls, women and those assigned female at birth were less likely to be autistic. However, recent research has highlighted the challenges in identifying autism in women, girls and those assigned female at birth. It is often said that the differences that these people experience are more subtle, or may appear so to others. Some autistic women, girls and those assigned female at birth feel they are “masking” their autism to try and hide the fact they feel different. This can result in misdiagnosis, late diagnosis, or some people not being diagnosed at all.

It is not unusual for girls or those assigned female at birth on the autism spectrum to be identified during the high school years, when social and academic demands make it difficult to cope. “Masking” works for a limited time but becomes too effortful, and even simple tasks can feel completely overwhelming and lead to increased anxiety and “meltdowns”. 

Strengths you may notice in a person with ASD

There are a number of strengths associated with ASD that are important to recognise. People with ASD often have subjects they are extremely interested in, will learn as much information as they can about, and can dedicate lots of time to without getting tired or bored. They may then become an expert or highly skilled in that area. Some have a remarkable memory for numbers or dates as well as other things related to their special interests. 

Furthermore, those with ASD are often detail-oriented, honest and fair. Those with ASD often also have an excellent sense of humour and are sensitive and compassionate people.

How a doctor determines if you or your child your child has ASD (diagnosis)

A GP may refer you or your child for an assessment by a specialist (usually a psychiatrist or clinical psychologist) if there is evidence of some or all of the typical symptoms of ASD, and if they have been prevalent throughout development and across different situations. For this reason, it’s important that your doctor spends time with you/your child to get a full understanding of your experience.

The specialist in ASD will talk with you or your child and other important people, such as family members or teachers. It is common in young children for an audiology assessment to take place, to rule out hearing loss as an explanation for some behaviours. After this, if ASD is still considered likely, formal assessment takes place, which may include questionnaires and an observation assessment such as the Autism Diagnostic Observation Scale (ADOS-2).

If ASD is confirmed, a treatment plan will be tailor-made for you or your child.

In addition, your doctor or mental health professional can provide you a referral to agencies that can offer financial support, respite and assistance with interventions; sometimes this can be done even without a diagnosis.

Intervention options

ASD is not something to be “cured”. Instead, increasing understanding about ASD for those who have been diagnosed and those close to the person (such as whānau and teachers) is one of the most helpful interventions. Furthermore, being aware of and supporting any difficulties that may arise related to ASD can have a significant positive effect on a person with an ASD diagnosis. For that reason, it’s important that children with ASD get help early in life so they can develop the skills and confidence they will need to lead a happy and fulfilling adult life.

However, if ASD is not identified early in life, there is support and help available for those who are diagnosed later in life so they too can flourish. A team of specialists, under the guidance of a mental health professional with experience in ASD, will develop a plan for you or your child which may contain the following components.

Therapy, such as talking therapies

Therapies that provide structure, direction and organisation are very helpful for a person with ASD, and can also help families develop strategies to best support a young person on the spectrum. Social skills training can also be a helpful form of talking therapy to support those who want to improve their confidence in social situations.

Talking therapies can also help to address other mental health symptoms that may occur alongside an ASD, such as anxiety, OCD or mood difficulties. Your specialist will explain what is available locally and which type of talking treatment is most suitable for your or your child. 

Education

Education about ASD can be extremely important to help you, your family/whānau and your supporters. There are websites listed in the resources section below, and your health specialist will provide information to you as well.

There are numerous well-designed programmes for children and families that can help. These can be found through your local branches of Autism NZ and the Children’s Autism Foundation.

At school

If your child has an ASD diagnosis, it’s best to keep up with their school programme and inform teachers of any changes in behaviour or treatment. Following an assessment, the person who conducted the assessment or who is supporting the intervention may be able to guide suggestions and support for the school. 

Talk to the school about getting assistance from the Ministry of Education’s Learning Support Service for help with your child's classroom behaviour and learning needs.

In secondary school, special assessment conditions may be useful, such as allowing extra time, allowing assessments to be completed on a computer, or holding the exam in a space with fewer sensory stimuli that may otherwise cause distress. The learning coordinator at school can assist in this process. 

Medication

Some medications may assist in improving difficulties that exist alongside ASD. These may help you or your child concentrate better, be less impulsive, feel calmer and be able to learn and practise new skills.

It’s important that the progress of a child on medication is checked and the treatment reviewed regularly with your doctor.

If you or your child is prescribed medication, you are entitled to know:

  • the names of the medicines 
  • what symptoms they are supposed to treat 
  • how long it will be before they take effect
  • how long they will have to be taken for and what their side effects are (short and long term).

Thanks to Madeline Dykes, clinical psychologist, and Sophie Jackson of the Mental Health Foundation's lived experience group for reviewing this content. Date last reviewed: September, 2022.

Thanks also to Sutherland Self-Help Trust for making the 2022 updates possible.