Why some children get a late autism diagnosis

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

This is because a new primary or secondary school environment might be overwhelming for autistic children and teenagers. The transition to it can be difficult for children to manage on their own. And if children have been hiding their autism signs until now, it might be hard for them to keep doing this in a new and overwhelming environment.

What an autism diagnosis means for older children and teenagers

You might wonder whether getting and having an autism diagnosis in later childhood or adolescence 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 strengths and difficulties.

A diagnosis describes your child’s strengths, abilities, difficulties and 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 think and learn in similar ways.

How autism is diagnosed in older children and teenagers

Autism diagnosis is based on:

• watching how your child interacts with others – that is, how your child is developing now
• interviewing you and your child
• 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.

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 an 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 is autistic, 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, differences from what’s typical 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 speech pathologist or psychologist first and then a paediatrician later.

The professionals might also visit your child’s school to see how your child interacts with the other children there. They might get your child’s teacher 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.

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 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 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 extra expenses?
• Does it cost extra for the report about my 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 older children 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.

Older autistic children and teenagers often realise they’re different in some ways from other children their age, so it’s OK to talk with your child about this. You can focus on your child’s strengths – for example, that your child has an excellent memory, is good with numbers or is very kind to animals. It’s also OK to talk about the things that your child finds challenging, like making friends.

Older children 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 as a way 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 scared. Children who were diagnosed when they were younger have grown up with their diagnoses as part of who they are. But older children can feel confused about who they are now. For example, they might feel conflicted about their newly identified ‘additional needs’.

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. These decisions are up to you and your child – but getting things out in the open can really help you and your child. It can also help others to understand your child better.