Why some children get a late autism diagnosis

Many autistic children are diagnosed in early childhood. But for others, the signs of autism might not be clear until they’re at primary school or even secondary school.

This might be because a new primary or secondary school environment involves more demanding schoolwork, more responsibility and more complex social relationships. These things can be challenging for autistic pre-teens and teenagers, and the signs of their autism become more obvious 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. Autistic pre-teens and teenagers might also have challenges coping with schoolwork and can have feelings of anxiety at school.

What an autism diagnosis means for pre-teens and teenagers

You might wonder whether getting an autism diagnosis in their pre-teens or teens will make a difference to your child.

The diagnosis itself won’t change your child. But it might help you and your child understand your child’s characteristics, strengths and differences.

A diagnosis can describe your child’s characteristics, strengths, skills, differences and support needs. This can help to guide therapies and supports for your child. It can also help you get services and funding to support your child’s development – for example, extra help at school.

A diagnosis can also help your child explore, understand, and embrace their autistic identity. It can also help your child find and make friends with people who have similar interests or who think and learn in similar ways.

How autism is diagnosed in pre-teens and teenagers

Autism diagnosis is based on:

• watching how your child interacts with others – that is, how your child is developing now
• interviewing you, your child and other people who know your child in different environments, like classroom teachers
• 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 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 and 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 whether they go to school.

This assessment can be done by a medical practitioner, like a GP or paediatrician, or by an allied health professional like a psychologist, a speech pathologist or an occupational therapist.

Medical evaluation
This part of the assessment is usually done by a GP, paediatrician or psychiatrist. They’ll physically examine your child, review their medical history and might do or ask for other tests to see whether your child’s characteristics and behaviour have a medical cause.

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 want to see you and your child several times or visit your child’s school to see how your child interacts with the other children there. They might also get your child’s teachers to do a questionnaire so they can get a sense of your child’s behaviour in the classroom, in the playground and with school peers.

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, or a specialist psychologist. 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 still 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 language disorder or anxiety. 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.

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 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.

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 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 any concerns that your child’s school has raised.

Talking with pre-teens and teenagers about an 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.

Your child will probably have questions about what’s going on. These questions can guide what you say – just answer them as honestly as you can, at a level your child will understand.

Autistic pre-teens and teenagers often realise they’re different in some ways from other people their age, so it’s OK to talk with your child about this. You can focus on your child’s strengths – for example, their excellent memory, their mathematical abilities or their kindness to animals. It’s also OK to talk about the things that your child finds challenging, like making friends.

Pre-teens and teenagers will react in various ways to having a diagnosis of autism.

Some might feel relieved to have a diagnosis. They can use the diagnosis to understand parts of themselves and to help with the things they find difficult.

But others might need time to come to terms with the diagnosis or find it difficult to adjust. They might even feel worried or uncertain.

When you help your child to feel comfortable with their identity and confident to be themselves, they can advocate for themselves and the supports they need.

The idea of neurodiversity can help your child adjust to their diagnosis and view autism positively. This is the idea that there’s natural variation in how people’s brains work.

Talking with other people about your child’s autism diagnosis

Talking about your child’s autism diagnosis with other people might feel strange or hard at first. You might wonder who to tell and what to say. But when other people know about your child’s diagnosis, they can understand your child better.

When you’re deciding who to talk with and what to say, it’s important to think about your child’s privacy and preferences. It’s probably best to ask your child what they want.