Why do some children get an autism diagnosis in primary or secondary school?

Some children get an autism diagnosis during the primary or secondary school years. This is because children are often handling more demanding or complex responsibilities and relationships in these years, and their autism signs become clearer as a result.

Signs of autism in pre-teens and teenagers can include more intense or special interests, communication differences and challenges with making or keeping friends.

What are the benefits of an autism diagnosis in primary or secondary school?

An autism diagnosis might help you and your child better understand who they are and why they might experience things differently from other people.

A diagnosis can describe your child’s characteristics, strengths, skills, differences and support needs.

For you and your child, this can help with:

• deciding on the right therapies and supports for your child
• getting services and funding to support your child’s development and learning.

For your child, it can help with:

• exploring, understanding and embracing their autistic identity
• making friends who have similar interests or see the world in similar ways.

How is autism diagnosed in young people (9-18 years)?

When autism professionals diagnose autism in pre-teens and teenagers, they usually do the following 5 things.

Talking with your child

Professionals will talk with your child about their friendships, social experiences, communication, learning, routines, interests, sensory preferences and school experiences. They’ll encourage your child to talk about difficulties they usually mask or hide.

Observing your child

Professionals will observe your child to understand how your child is developing and how they communicate, play, interact with others.

Talking with you and other people

Professionals will talk with you and other people who know your child well, like classroom teachers. This will help them understand more about your child’s communication, interactions and behaviour.

Reviewing your child’s developmental history

Professionals will look over how your child has developed and what they were like when they were younger.

Assessing your child

The National guideline for the assessment and diagnosis of autism in Australia recommends that autism diagnosis should include 2 standard assessments:

• comprehensive needs assessment
• diagnostic evaluation.

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 characteristics, strengths and skills in areas like:

• daily living skills
• communication
• thinking.

To better understand your child’s daily support needs, it also looks at your child’s everyday environment, including who they live with and where and how they learn – for example, at school.

This assessment can be done by:

• a medical practitioner, like a GP or paediatrician
• an allied health professional like a psychologist, a speech pathologist or an occupational therapist.

Medical evaluation

This is a physical examination of your child, including a review of their medical history. It might also include tests to see whether your child’s characteristics and behaviour have a medical cause.

This part of the assessment is usually done by a GP, paediatrician or psychiatrist.

Diagnostic evaluation

If the results from the comprehensive needs assessment suggest your child is autistic, the National guideline recommends a diagnostic evaluation to confirm that autism is the best explanation for your child’s characteristics and behaviour.

As part of a diagnostic evaluation, health professionals will:

• assess your child’s strengths, differences and difficulties in areas like thinking, learning and communicating
• ask you questions
• review the information from the comprehensive needs assessment.

They might:

• see you and your child several times
• observe your child at school or in another learning, community or support setting
• ask teachers, educators or other people to do a questionnaire about your child.

There are 2 approaches to diagnostic evaluation:

• lead practitioner diagnostic evaluation
• consensus team diagnostic evaluation.

The approach that’s best for your child will depend on their needs and the information that health professionals need to make a confident diagnosis.

Lead practitioner diagnostic evaluation

This approach is best when your child’s autism signs or characteristics are clear and another explanation is very unlikely.

This assessment is completed by a:

• specialist medical practitioner, like a paediatrician or psychiatrist
• psychologist with expertise in autism.

The professional leads the process and makes the decision, but they’ll get information from other sources and professionals if they need it.

If a lead practitioner thinks they can’t make a confident diagnosis, they’ll refer the evaluation to a consensus team diagnostic evaluation.

Consensus team diagnostic evaluation

This approach is recommended when signs or characteristics of autism are less clear or there might be another explanation for the signs, like a learning disability or mental health condition.

This assessment is completed by a team of professionals with a range of backgrounds.

When professionals are diagnosing autism, they use the Diagnostic and statistical manual of mental disorders (DSM-5-TR). DSM-5-TR uses the term ‘autism spectrum disorder’. It lists signs and characteristics and states how many of these must be present to confirm a diagnosis of autism.

How much does autism assessment and diagnosis cost?

The cost of autism assessment and diagnosis depends on whether your child is assessed through the public or the private health system.

Public assessment

Public assessment services are funded through your state or territory government and are often run through hospitals or health services. These services are free or low cost, but many have very long waiting lists.

Private assessment

A private assessment can be expensive, and there might also be a waiting list.

You might be able to claim a rebate from Medicare to help with the costs of the assessment sessions, but there are still extra expenses, and you’ll need to cover the full cost of any more assessment sessions. You might also be able to claim some of the fees through your private health fund, if you have one.

How to decide on public versus private assessment

These questions can help:

• Is there a waiting list? How long will it take before you get your first appointment?
• How long will it take until the assessment is finished and you get the results?
• How many sessions will the professionals need with you and your child?
• Can you claim anything back from Medicare?
• Can the health professionals give you an estimate of extra expenses?
• Does it cost extra for the report about your child’s results?

You can prepare for an autism assessment by writing down your questions about your child, including examples of things you’ve noticed. It’s also good to include things that teachers, educators or other people involved in your child’s learning or care have noticed.

What to say to your pre-teen or teen about their autism diagnosis

If your child is in the process of being diagnosed or has a new autism diagnosis, you might wonder about what and how much to tell your child. Talking with your child early about their autism diagnosis will help them think more positively about themselves and their autistic identity.