Autism diagnosis for children: a guide

Autism diagnosis: what to expect

Diagnosis of autism is based on:

watching how your child plays and interacts with others – that is, how your child is developing now
interviewing or doing questionnaires with you or other people who know how your child interacts and behaves
reviewing your child’s developmental history – that is, how your child has developed in the past.

The National guideline for the assessment and diagnosis of autism in Australia recommends that autism diagnosis should include a:

comprehensive needs assessment
diagnostic evaluation.

If you think your child might be autistic, it’s good to act early and make an appointment with a professional. For example, you could talk to your child and family health nurse, your GP or a paediatrician.

Comprehensive needs assessment

A comprehensive needs assessment has 2 parts:

assessment of functioning
medical evaluation.

Assessment of functioning
This part of the assessment looks at your child’s characteristics, strengths and skills in areas like daily living skills, communication and thinking. To better understand your child’s daily support needs, it also looks at your child’s everyday environment, including who they live with and whether they go to child care or school.

This assessment can be done by a doctor, like a GP or paediatrician, or by an allied health professional like a psychologist, a speech pathologist or an occupational therapist.

Medical evaluation
This part of the assessment is usually done by a GP, paediatrician or psychiatrist. They’ll physically examine your child, review their medical history and might do or ask for other tests to see whether your child’s characteristics and behaviour have a medical cause.

Diagnostic evaluation

If the results from the comprehensive needs assessment suggest your child is autistic, the National guideline recommends a diagnostic evaluation to confirm that autism is the best explanation for your child’s characteristics and behaviour.

As part of a diagnostic evaluation, health professionals might want to see you and your child several times to:

assess your child’s strengths, differences and difficulties in areas like thinking, learning and communicating
ask you questions
review the information from the comprehensive needs assessment.

There are 2 approaches to diagnostic evaluation:

lead practitioner diagnostic evaluation
consensus team diagnostic evaluation.

The approach that’s best for your child will depend on their needs and the information that health professionals need to make a confident diagnosis.

Lead practitioner diagnostic evaluation
This approach is best when your child’s autism signs or characteristics are clear and another explanation is very unlikely.

This assessment is completed by a specialist medical practitioner, like a paediatrician or psychiatrist, or a specialist psychologist. The professional leads the process and makes the decision, but they’ll get information from other sources and professionals if they need it.

If a lead practitioner thinks they can’t make a confident diagnosis, they’ll refer the evaluation to a consensus team diagnostic evaluation.

Consensus team diagnostic evaluation
This approach is recommended when signs or characteristics of autism are less clear or there might be another explanation for the signs, like language disorder or anxiety. This assessment is completed by a team of professionals with a range of backgrounds.

Tests and tools for diagnosing autism

When health professionals are doing comprehensive needs assessments and diagnostic evaluations, they use a range of tools.

These tools include the Diagnostic and statistical manual of mental disorders (DSM-5-TR). DSM-5-TR uses the term ‘autism spectrum disorder’. It lists signs and characteristics and states how many of these must be present to confirm a diagnosis of autism.

Health professionals also use the following screening and diagnostic tools.

Screening tools
Professionals use screening tools to decide whether your child has enough signs of autism to go on to a full assessment. Some professionals use these screening tools together with their own professional judgment. Australian screening tools include:

Diagnostic tools
Some professionals use tools that are specifically developed for detailed autism diagnosis. Diagnostic tools include:

Other tools
Sometimes professionals use other tools to find out about your child’s strengths, differences and difficulties. These other tools include:

Preparing for an autism assessment

You can prepare for your child’s autism assessment by writing down your questions or concerns about your child, along with your observations. Include specific examples of things you’ve noticed, how old your child was when you noticed the things, and how long you’ve noticed these things.

For example:

‘Ayub doesn’t respond to his name, even when I call him many times. I’ve noticed this for the last 3 months.’ (Write date and child’s age.)
‘Stacey lines up her blocks in a very long line. She gets upset when her brother messes up the line. I’ve noticed this for the past few weeks.’ (Write date and child’s age.)
‘Sienna gets upset when we go a different way to child care. She cries and says, “This isn’t the way to child care!” I’ve noticed this for the last 6 months.’ (Write date and child’s age.)

It’s also good to include any observations or concerns that your child’s early childhood education service or school has raised.

Depending on your child’s age and language skills, you might also be able to prepare your child for the assessment by telling them what to expect. For example, ‘You’ll be meeting some new people today. You’ll be doing some fun activities and play with different toys. I’ll be there with you’.

You can also prepare your child for the appointment by using pictures or social stories.

Waiting for an autism diagnosis

You might be put on a waiting list for assessment. Or sometimes health professionals will decide to observe your child for a bit longer before they make a diagnosis, especially if your child is younger than 18 months. They might ask you to watch your child’s development and keep records. This is to see whether your child’s characteristics, skills and behaviour change with a few more months of development.

If you’re told to wait and watch, there are things you can do to help your child’s development:

Contact the NDIS. The NDIS early childhood approach supports children with developmental concerns, regardless of whether they’re diagnosed with autism.
Make another appointment with your child and family health nurse or your GP if things change and you feel more concerned about your child’s development. This can be an important way to add more information to your child’s referral.
Seek a second or even third opinion if you feel you want one.

Early intervention is the best way to support autistic children’s development and wellbeing. You can get supports and therapies while you’re waiting for an assessment or diagnosis for your child.

Funding for autism assessment and diagnosis

You can have your child assessed for autism through the public or the private health system.

Public assessment services are funded through your state or territory government and are often run through hospitals or health services. These are offered at no cost to families, but many have long waiting lists.

The other option is to be assessed privately. A private assessment can be expensive, and there might also be a waiting list.

You can claim a rebate from Medicare to help with some of the costs of the assessment sessions, but there are still extra expenses. You might also be able to claim some of the fees through your private health fund, if you have one.

When you’re deciding whether to go through the public or private system for assessment, these questions can help:

Is there a waiting list? How long will it take before you get your first appointment?
How long will it take until the assessment is finished and you get the results?
How many sessions will the health professionals need with you and your child?
Can you claim anything back from Medicare?
Can the health professionals give you an estimate of extra expenses?
Does it cost extra for the report about your child’s results?