Autism diagnosis: what to expect
There’s no single test for autism. Instead, autism diagnosis 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.
Diagnosis usually involves many specialists and professionals assessing your child – this is called a multidisciplinary assessment. When many specialists work with your child, it gives your child the best chance of an accurate diagnosis. It also helps to develop the best plan for supporting your child.
A multidisciplinary team usually includes a paediatrician, a psychologist, a speech pathologist and sometimes a child psychiatrist. It might also include other professionals, like an occupational therapist.
The professionals might want to see you and your child several times. They’ll ask you questions about your child’s current and past development and behaviour. They’ll measure your child’s strengths and difficulties in areas like thinking, moving, socialising, communicating and so on. And they’ll ask about or watch how your child interacts and plays with others.
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 first at a later time.
You might need a referral to see these professionals, so your GP or child and family health nurse are great places to start if you’re concerned about your child's development.
You know your child best. If your GP, nurse or paediatrician doesn’t have any concerns about your child’s development but you’re still worried, get a second or even third opinion. Talking to other parents can be a great way to find the right professional.
Tests and tools for diagnosing autism
When diagnosing autism, professionals like paediatricians and psychologists refer to the Diagnostic and statistical manual of mental disorders (DSM-5). DSM-5 uses the term ‘autism spectrum disorder’. It lists signs and symptoms and states how many of these must be present to confirm a diagnosis of autism spectrum disorder.
Professionals also use standardised tests or tools to help them diagnose autism.
Professionals use screening tools to decide whether your child has enough signs of autism to go onto a full assessment. Some professionals also use these screening tools together with their own professional judgment to make a diagnosis.
Screening tools include:
- Autism Behavior Checklist (ABC)
- Autism Detection in Early Childhood (ADEC)
- Childhood Autism Rating Scales, Second Edition (CARS-2)
- Modified Checklist for Autism in Toddlers (M-CHAT)
- Parents Evaluation of Developmental Status (PEDS)
- Social Attention and Communication Surveillance, Revised (SACS-R)
- Social Communication Questionnaire (SCQ)
- Social Responsiveness Scale, Second Edition (SRS-2).
Some professionals use tools that are specifically developed for detailed autism diagnosis. Diagnostic tools include:
- Autism Diagnostic Observation Schedule, Second Edition (ADOS)
- Autism Diagnostic Interview, Revised (ADI-R).
Sometimes professionals use other tools to find out what strengths and difficulties your child might have. These tools might not identify every autistic child, especially those who have milder signs of autism.
These other tools include:
Testing for other medical difficulties and delays
Because other medical conditions sometimes occur with autism, your paediatrician might also do other tests, like a physical examination and history, and a hearing test. These tests:
- check for signs of other conditions that might explain your child’s symptoms
- help to identify any other medical conditions that might need treatment.
It’s also good for you and the professionals you’re working with to know more about your child’s strengths and difficulties in thinking and learning. Professionals assess these strengths and difficulties differently depending on your child’s age:
- Developmental assessment – this is for children under four years old.
- Cognitive assessment (IQ test) – this is for children over four years old.
These assessments can help professionals understand whether your child’s difficulties are caused by development delays or intellectual disability rather than autism.
Most children will also have a communication and language assessment by a speech pathologist.
Some children might also have their daily living skills, like feeding themselves and dressing, assessed by an occupational therapist.
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.
Occasionally, the outcome of your assessment might be a recommended period of ‘watchful waiting’, especially if your child is younger than 1-2 years. This means your health professional wants to see whether your child’s symptoms change with a few more months of development. It’s possible the symptoms might reduce over time or become more pronounced.
If you’re told to wait and watch, again the key is to be proactive:
- Contact the NDIS. The NDIS can support children with developmental difficulties, even before an official diagnosis of autism.
- Get your child checked every three months by your child health nurse, GP or paediatrician.
- Seek a second or even third opinion if you feel you want one.
- Start exploring early intervention options.
Autism assessment can be expensive, particularly if you’re seeing private specialists, but you might be able to get help with covering your costs. If you have private health insurance, you can ask your insurer whether you can use it for an autism assessment. You can also ask your GP or paediatrician about access to Medicare rebates for sessions with allied health professionals like psychologists and speech pathologists as part of getting an autism diagnosis.
How the NDIS can help before an autism diagnosis
If your child is aged 0-6 years, your child can get support through the NDIS’s early childhood early intervention approach without an autism diagnosis.
You’ll meet with an NDIS early childhood partner to discuss your child’s needs.
Depending on your child’s needs, this support might be information about and contacts for mainstream supports in your area, like community health services, playgroups or peer support groups. It might also be short-term early intervention supports.