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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.

    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 have autism, it’s good to act quickly 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 medical practitioner, like a GP or paediatrician, or by an allied health professional like a psychologist or occupational therapist.

    Medical evaluation
    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.

    Diagnostic evaluation

    If the results from the comprehensive needs assessment suggest your child has autism, 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 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 at a later time.

    You can prepare for an autism assessment by writing down your concerns about your child, including examples of things you’ve noticed. It’s also good to include any concerns that your child’s early childhood education service or school has raised.

    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. Screening tools include:

    • Autism Behavior Checklist (ABC)
    • Autism Detection in Early Childhood (ADEC)
    • ASDetect
    • 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).

    Diagnostic tools
    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).

    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:

    • Developmental Behaviour Checklist (DBC)
    • Psycho Educational Profile - Third Edition (PEP-3).

    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 diagnose anything, especially if your child is younger than 1-2 years. 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.
    • Start exploring early intervention options.

    Funding for assessment and diagnosis of autism

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

    How the NDIS can help before an autism diagnosis

    Early intervention is the best way to support autistic children’s development and wellbeing.

    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.

    For more information on autism and early intervention options, you could attend a free Early Days workshop in your area. Another option is contacting your state autism association.

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    Raising Children Network is supported by the Australian Government. Member organisations are the Parenting Research Centre and the Murdoch Childrens Research Institute with The Royal Children’s Hospital Centre for Community Child Health.

    Member Organisations

    • Parenting Research Centre
    • The Royal Children's Hospital Melbourne
    • Murdoch Children's Research Institute

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