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 you
- 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 spectrum disorders recommends that autism diagnosis should include 2 standard assessments:
- 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 strengths and abilities in areas like daily living skills, communication and thinking. It also looks at your child’s support needs, health, medical history and family history. This assessment can be done by a doctor, like a GP or paediatrician, or by an allied health professional like a psychologist or an occupational therapist.
This part of the assessment is done by a GP, paediatrician or psychiatrist. They’ll physically examine your child and might do other tests like a hearing test to see whether there’s a medical cause that could explain your child’s behaviour.
If the results from the comprehensive needs assessment suggest your child is autistic, the National guideline recommends a diagnostic evaluation to find out whether autism is the best explanation for your child’s behaviour.
As part of this evaluation, health and child development professionals will:
- assess your child’s strengths, differences from what’s typical, and difficulties in areas like thinking, learning and communicating
- ask you questions
- review the information that was collected in the comprehensive needs assessment.
A paediatrician, psychiatrist or psychologist might do the evaluation, or the evaluation might involve a team of professionals including an occupational therapist or a speech pathologist. When a team of professionals is involved, it’s called a multidisciplinary assessment.
The professionals might want to see you and your child several times. You might meet with all the professionals on the same day, in the same place. Or you might see one professional at a time. For example, you might see a paediatrician first and then a speech pathologist or psychologist later.
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 spectrum disorder.
Health professionals also use the following screening and diagnostic 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 to make a diagnosis. Australian screening tools include:
- Autism detection in early childhood (ADEC) 2nd edition
- Social attention and communication surveillance, revised (SACS-R).
Some professionals use tools that are specifically developed for detailed autism diagnosis. Diagnostic tools include:
- Autism diagnostic observation schedule, second edition (ADOS-2)
- Autism diagnostic interview, revised (ADI-R)
- Monteiro interview guidelines for diagnosing the autism spectrum, second edition (MIGDAS-2).
Sometimes professionals use other tools to find out what strengths and difficulties your child has. These tools might not identify every autistic child, especially those who have milder signs of autism. 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 what you’ve noticed, how old your child was when you noticed the things, and how long you’ve noticed these things.
- ‘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. Try not to see this as a period when nothing happens. If you can, look for other options – you might be able to get an assessment sooner.
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 behaviour and keep records. This is to see whether your child’s behaviour changes 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 can support children with developmental difficulties, even before an official diagnosis of autism.
- Get your child checked every 3 months by your child and family health nurse, GP or paediatrician.
- Seek a second or even third opinion if you feel you want one.
How the NDIS can help before an autism diagnosis
Early therapy is the best way to support autistic children’s development and wellbeing.
If your child is younger than 7 years, they can get support through the NDIS’s early childhood early intervention approach without an autism diagnosis.
You’ll meet with an early childhood partner to discuss your child’s needs.
Depending on your child’s needs, this support might be referrals to services in your area, like community health services, playgroups or peer support groups. It might also be therapies to help your child develop everyday skills like eating, washing, dressing, going to the toilet and so on.
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 we get our first appointment?
- How long will it take until the assessment is finished and we get the results?
- How many sessions will you need with me and my child?
- Can I claim anything back from Medicare?
- Can you give me an estimate of extra expenses?
- Does it cost extra for the report about my child’s results?