Getting A Diagnosis

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.

Key Points

First step – seeing a GP for a referral

Autism can be diagnosed from 12-18 months, but it’s usually from around 2 years of age. If you think your child may have autism, it’s vital to get a full assessment and diagnosis from a qualified professional or team of professionals using recognised autism assessment tools.

A good first step is to visit your GP or other family healthcare provider to get a referral for an autism assessment. GPs aren’t qualified to make an official diagnosis but they can give you the requisite referral to see someone who is. This might be a child psychologist, psychiatrist or a paediatrician who is experienced in the diagnostic process. The GP will also 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.

A trusted GP should take your concerns seriously, but if not, seek a second opinion as your GP is unlikely to be an expert in autism. Research shows that parents are often the best judges of developmental concerns in their own children.

What are my options?

There are several routes you can take to get an assessment. They largely fall into two categories – public or private. Accessing them depends on a variety of factors including time, money and where you live. Whatever option you take you will run into the roadblock of waitlists. This can be terribly frustrating and parents recommend getting on multiple waitlists if you can.

Note: It is important to remember that you don’t need a formal diagnosis to begin early intervention services. You may get access to some funding from the NDIS (ECEI).

Who can diagnose autism?

The diagnostic evaluation may be conducted by a single individual such as a Paediatrician, Child Psychiatrist or a Psychologist. 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.

Commonly a Multidisciplinary Team will include a paediatrician (or child and adolescent psychiatrist), a Psychologist and a Speech Psychologist but other health professionals may provide input if required. The guideline recommends the following steps to diagnosis:

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.

Medical assessment

A doctor will examine your child and conduct tests to see if there could be a medical cause for their developmental delays.

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.

Autism assessment

A psychologist and a speech pathologist talk about what happens in an autism assessment. As part of the assessment, health professionals use activities like puzzles, games and pretend play to observe your child’s behaviour, social skills and communication. They also talk to you to find out about your child’s early development.

Tests and tools for diagnosing autism

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

These tools include the Diagnostic and statistical manual of mental disorders (DSM-5). DSM-5 uses the term ‘autism spectrum disorder’. It lists signs and behaviours 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 tests and 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 also use these screening tools together with their own professional judgment to make a diagnosis.

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 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:

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. In NSW, the Children’s Hospital Network and various NSW Health child development units provide public diagnostic services. Your GP or Paediatrician will be able to provide more information and refer you to your nearest location.

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.

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

For children aged 13 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.

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 my out-of-pocket expenses?
  • Does it cost extra for the report about my child’s results?

What to do while you’re waiting for an assessment

It can be a stressful time waiting for your child’s autism assessment. Try not to see this as a period when nothing happens. 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.
  • 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 aged under 7 who have been identified with a developmental delay or 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.

  • Start exploring Early Intervention options. You could also attend an Early Days workshop. These are free workshops for parents and carers of young children with autism but are also suitable for parents whose children have not yet received a diagnosis.
  • PlayConnect Playgroups are designed for families of children aged 0-6 years who have unique needs associated with having an Autism Spectrum Disorder (ASD) or autism-like characteristics in communication, behaviour or social skills. Children do not require a formal diagnosis or referral to come and enjoy all that PlayConnect has to offer.
  • 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.