How are young people diagnosed with autism?

Seeking a diagnostic assessment

Many children on the autism spectrum are diagnosed in early childhood.  But for others, the signs during these early years might not be as clear.  It may not be until the middle years or even later that autism is suspected; when social and behavioural differences become more obvious and difficulties arise.

The following video discusses diagnosis in children beyond early childhood.

Sourced from the Raising Children website, Australia’s trusted parenting website. For more parenting information, visit raisingchildren.net.au.

The assessment process from initial referral to formal diagnosis can be a time of stress and uncertainty for both the individual undergoing assessment and their care givers.  A diagnosis in the middle years can elicit mixed feelings. It can bring a sense of relief and purpose to individuals with autism and their care givers when it confirms long held intuitions of difference. However care givers may also experience a sense of grief and loss. Seeking and receiving current and reliable information combined with positive social support have been demonstrated to boost the resilience of caregivers of children with autism.

Information and support at all stages of the diagnostic process can be accessed by contacting the information team at Autism Tasmania.

Information relevant to care givers whose child has just received an autism diagnosis is also available on the Australian Raising Children’s Network website. Along with a wealth of useful information, this website also has an interactive Autism Services Pathfinder tool which is an especially helpful source of information on:

  • where to start with autism services
  • which professionals you might need to see
  • when you might need to plan for the future
  • names, addresses, websites and phone numbers

Best practice assessment and diagnosis

There are several aspects of best practice for assessment and diagnosis of autism. Assessment for autism is best conducted by a multidisciplinary team of clinicians with appropriate training and familiarity with the condition, for example a developmental paediatrician, psychiatrist, psychologist, speech and language pathologist and occupational therapists. The process should involve:

  • interviews with individuals who know the child from a variety of perspectives
  • observation of the child in a number of different settings
  • a history from the family, school and other relevant settings
  • Evidence based screening tools should be used during both natural and structured observations

The experience of seeking and gaining a diagnosis can vary from person to person. Diagnosis of autism is made on the basis of observed behaviour. 

When seeking a diagnostic assessment, parents/carers and individuals in Tasmania have a choice of services.

Diagnostic Pathways in Tasmania

Obtaining a referral from your GP is the first step towards obtaining an assessment.  This referral can be for your child’s paediatrician, psychologist, psychiatrist or to Tasmanian Autism Diagnostic Service.

What is the DSM-5?

Since 2013, diagnosis of autism in Australia is made in accordance with the American Psychiatric Association Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition – also known as the DSM-5. Sometimes the International Statistical Classification of Diseases and Related Health Problems, Tenth Edition (ICD-10), is also referred to. Prior to this time, previous editions of the DSM were used.

Extensive research into autism has led to an increased understanding of its characteristics.  This knowledge base contributed to the revised description of autism found in the DSM-5.  The DSM-5 describes autism as having two main areas of impairment: “social communication” and “restricted, repetitive patterns of behaviour, interests and activities”. Differences in sensory perception are included in the second domain.

‘Dimensional elements’ – level 1, 2 or 3 – were also introduced in the DSM-5. This rating system indicates the level of support required by the individual in each domain and reflects the broad spectrum of ways in which autism affects different people.  Level 1 indicates that the individual “requires support”, level 2: “requires substantial support” and level 3: “requires very substantial support”.  These levels are a guide for planning only and should not be used as an assessment indicator for long term support needs. Levels of support indicators are attributed to each of the two main domains, so it is possible for an individual diagnosed under the DSM-5 to have two different ratings of required support.

Other assessment tools

Alongside the DSM-5 and ICD-10, screening and assessment tools that may be used during the assessment process for autism include, The Child Autism Rating Scale (CARS), The Autism Diagnostic Observation Schedule (ADOS), Autism Detection in Early Childhood (ADEC), The Autism Diagnostic Interview – revised (ADI-R) and The Social Communication Questionnaire (SCQ). In addition, diagnosing professionals often administer cognitive assessments and other tests to gather information about the child’s development.