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 testing and assessing your child – this is called a multidisciplinary assessment. When lots of 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.
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, communicating and so on. And they’ll 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 speech pathologist or psychologist first and then a paediatrician 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.
You know your child best. If your GP, nurse or paediatrician doesn’t have any concerns about your child, but you’re still worried about your child’s development, get a second opinion.
Talking to other parents can be a great way to find the right professional.
Most people find the diagnosis process quite confronting. It’s not much fun having someone point out all the things that your child can’t do, things that typical children just pick up naturally. But think of this assessment as a benchmark, against which you can measure your child’s progress once they start in an intervention program.
– Seana Smith, mother of four and co-author, Australian autism handbook
Tests and tools for diagnosing autism
When diagnosing autism, professionals like psychiatrists 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 autism signs to go on to a full assessment. Some professionals also use these screening tools together with observing your child to make a diagnosis.
Screening tools include:
- Autism Behaviour Checklist (ABC)
- Autism Detection in Early Childhood (ADEC)
- Childhood Autism Rating Scales, Second Edition (CARS-2)
- Modified Checklist for Autism in Toddlers (M-CHAT)
- Social and Communication Surveillance (SACS)
- Social Communication Questionnaire (SCQ).
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 type of 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:
- Developmental Behaviour Checklist (DBC)
- Psycho Educational Profile - Third Edition (PEP-3).
Testing for other medical difficulties and delays
Because other medical difficulties sometimes go along 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 problems 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.
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 go away 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 development difficulties, even before an official diagnosis of autism.
- Get your child checked every three months.
- Seek a second opinion if you feel you want one.
- Start exploring early intervention options.
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 early intervention (ECEI) partner to discuss your child’s needs.
Depending on your child’s needs, the NDIS ECEI partner might:
- give you information
- refer you to other services like community health services, playgroups or peer support groups
- provide or help you find ECEI support for your child – for example, a speech pathologist or occupational therapist.