Getting a diagnosis for an autistic child

The assessment and diagnosis of autism is complex and so are the emotions and issues that arise with it.

Getting an accurate diagnosis for your child is a great first step towards understanding and supporting your child and family. In this section we will explore how to best get a diagnosis and discuss the feelings and issues that often arise during this period.

Diagnosing children

Who can diagnose autism?

An Australian national guideline for the assessment and diagnosis of autism spectrum disorders (ASD) was introduced in 2018, aiming to standardise autism assessments and diagnoses nationwide. This guideline represented the first unified approach to autism assessment in Australia. In 2023, a second edition was released, incorporating new evidence and perspectives alongside those from the original, resulting in updated and new recommendations where necessary.

The diagnostic evaluation may be conducted by:

A multidisciplinary team will typically include a paediatrician (or child and adolescent psychiatrist), a psychologist, and a speech pathologist, but other health professionals may provide input if required.

A single health professional may be able to diagnose a child with obvious signs of autism. A team approach is necessary for children with less clear symptoms or who have other conditions that make the diagnosis more complicated.

The guideline recommends the following steps to diagnosis:

1. Assessment of function: A health professional will ask you and/or your child questions about their thinking and learning, speech and language, daily living skills, friendships and school. This will assess their abilities and any support needs they have and identify if they have any developmental delays.
2. Medical assessment: A doctor will examine your child and conduct tests to see if there could be a medical cause for their developmental delays.
3. Diagnostic assessment: This step is necessary only if doctors can’t find another cause for your child’s behaviour. You and your child will be interviewed, and your child will be observed for signs of autism. You can read more about what’s involved here.

Where can we get a diagnosis?

Services vary from state to state and from city to rural locations. In the first instance, it’s best to talk to your primary health care provider, usually your GP, who will be familiar with what’s available in your local area.

There are several state government-funded services that specialise in the assessment and diagnosis of autism.

These have the advantage of being free but are often in high demand, with waiting lists stretching to several months. Many services now need a referral letter from a paediatrician, although some may accept referrals directly from your GP. For state and territory based diagnosis centres please scroll to the bottom of the page.

There are also private health professionals and teams who conduct assessments on a fee-paying basis. If you can afford this option, it is usually the fastest way to get a diagnosis.

For patients aged 25 years or under, Medicare rebates are available to help cover at least some of the cost. These Medicare items cover:

• Assessment and diagnosis by a paediatrician or child and adolescent psychiatrist.
• Up to 4 allied health professional assessments to assist with the diagnosis. (Eligible allied include psychologists, speech pathologists, occupational therapists, audiologists, optometrists, orthoptists or physiotherapists)

If you have private health insurance ‘extras’ cover it’s worth checking if this can help cover the cost of autism assessments too.

Some state autism associations offer multidisciplinary assessments (at a cost). You will need a doctor’s referral for these. Other state associations will be able to direct you to assessment services in your local region.

For children who live in rural and remote locations, options are more limited, but thanks to modern technology, things are improving. Some government services, state autism associations and organisations like Royal Far West offer telehealth services where families can consult with health experts over a secure video link.

Royal Far West also offers a residential multidisciplinary assessment program for children who live in regional and remote NSW. For localised services like these please check in with Autism Connect.

*but could also be a nurse, allied health professional or an Aboriginal health worker.

Health professionals your child may see during the assessment process

• Paediatrician: A medical doctor with special training and skills in children and their diseases. A developmental paediatrician specialises in child development and behaviour.
• Child and adolescent psychiatrist: A medical doctor with special training in treating children and teenagers with mental illness.
• Psychologist: An allied health professional trained to assess and treat mental health and behavioural problems.
• Speech pathologist: An allied health professional who assesses and treats speech, language and communication disorders.
• Occupational therapist (OT): An allied health professional trained to assess and support people with physical, sensory, or cognitive (thinking) problems and help them regain their independence.
• Social worker: An allied health professional trained to assist people and families manage difficulties. This could be through a combination of counselling and practical support.

What to do while you’re waiting for an assessment

It can be a stressful time waiting for your child’s autism assessment. The good news is your child doesn’t need a formal autism diagnosis to access support.

The NDIS’s Early Childhood Early Intervention (ECEI) approach is available to all children younger than 6 with developmental delay or children younger than 9 with disability.

The first step is to meet with an NDIS Early Childhood Partner to discuss your child’s needs. They can give you information about the supports and services available in your local community, provide some short-term early intervention support where appropriate, and request access into the NDIS if this is required.

Getting a diagnosis when your child is already at school

While autism is a condition of early childhood, some children will not be diagnosed until they reach school or, in some cases, high school.

In most cases, these children and young people have less pronounced symptoms of autism. They may speak well and have no obvious learning problems. Some may even be considered gifted and talented because of their wide vocabularies and mature interests.

Other children may be from different cultures and backgrounds where autism is less well recognised.

Only when these children reach school and start mixing with teaching staff and other children, do their social and educational challenges become clear.

Signs of autism in primary school aged children and teenagers

• Talking too little or too much, with their speech dominated by their favourite topics
• Talking in a monotonous tone and using unusual expressions
• Talking ‘at’ others rather than having a two-way conversation; not good at ‘small talk’
• Difficulty interpreting and using facial expressions and gestures
• Being less aware of socially expected behaviour, for example criticising the teacher, or refusing to join in a classroom activity
• Being easily overwhelmed in social situations and needing time alone
• Not enjoying situations that most children like, such as school excursions
• Trouble with cooperative play;  wanting to play the same way every time
• Having no or few friends
• Sometimes displaying unusual physical movements, such as touching, biting, rocking or finger flicking
• Having unusually intense interests
• Having a strong need to follow rules and routines and becoming upset when these change
• Being over or under-sensitive to sensory stimuli (e.g. textures, sounds, smells, taste)
• Sometimes displaying aggressive behaviour to avoid stressful situations
• Anxiety is common, especially in adolescence

Problems with learning can also become apparent. Children may have uneven mix of skills, being advanced in maths and/or reading but having poor motor skills. This may mean they struggle with handwriting and sports. As schoolwork becomes more challenging, they may have trouble keeping up with the workload.

All these things added together can make school a hard time.

Gender differences

While autism is more common in boys, we now recognise that autism can get overlooked in girls. This is especially true for girls with normal or high intelligence.

This is because girls are better at camouflaging their problems, by imitating other people when they’re socialising. Unfortunately, this can be exhausting. Their restricted interests often don’t stand out as unusual too (e.g. celebrities, pop music, fashion, horses, pets, and literature).

Girls with autism may only have one or few close friendships and be intense and possessive about those friendships. By high school, they may become victims of bullying.

How autism is diagnosed in school-aged children and teenagers

• It’s common for children with autism to act differently at school than they do at home. For parents of first or only children, their behaviour at school may be the first real sign there’s a problem.
• You may notice your child is unhappy at school or has few friends.
• Alternatively, a teacher or a school counsellor may be the first person to raise concerns regarding your child’s development. Teachers are not qualified to diagnose autism but are qualified to observe children and know when a child is not behaving in a typical fashion.
• Your child’s school may recommend your child undergo a diagnostic assessment.  Try to look at this as a way to identify your child’s strengths and difficulties and any supports they may need in the classroom.
• It’s best to work positively with the school as this will bring the best outcome for your child. The school should always treat you and your child with respect, too.  
• While an assessment may turn up autism, it could as easily turn up other treatable issues, such as speech delays or hearing problems.
• The school may offer to arrange a diagnostic assessment, or you could organise this yourself. Talk to your GP about options.

Undergoing a diagnostic assessment

The process for getting a diagnosis when your child is school-age is similar to the process for a younger child. You can read about this here. Some differences may include:

Receiving the news

Discuss with the assessment team how you would like the diagnosis communicated. Depending on your child’s age and maturity, they may or may not wish to be present at the meeting.

An autism diagnosis can provoke many emotions. You may be concerned about negative stigma and the reaction of family and friends. Or else you could feel relief that you finally have an explanation for your child’s difficulties.  

A diagnosis is important, as it leads to funding and interventions to help both your child and your family. It can often lead to greater understanding and inclusion at school.

Your reaction to the diagnosis will influence your child’s reaction. If and when you plan to tell them, wait for a time when you feel calm and in control.

As your child grows, learning about their own diagnosis can lead to having a better understanding of who they are.  It can also open the door to a community of other people on the autism spectrum.