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.
During these years, social and behavioural differences can become more obvious as children respond to the social and educational challenges of school and friendships.
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, or the way that you think or feel about 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. And it can help to guide therapies and support for your child and help with getting services and funding to support your child’s development – for example, extra help at school.
How autism is diagnosed in older children and teenagers
There’s no single test for diagnosing autism in children and teenagers. Instead, 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.
Diagnosis usually involves many specialists and professionals testing and assessing your child – this is called a multidisciplinary assessment. When many specialists work with your child, it gives your child the best chance of an accurate diagnosis. It also helps to develop the best plan to support your child.
A multidisciplinary team will usually include a paediatrician, a psychologist, a speech pathologist, and sometimes a child psychiatrist. It might also include other professionals, like an occupational therapist.
The professionals might want to see you and your child several times. They’ll ask you questions about your child’s current and past development and behaviour. They’ll measure your child’s strengths and difficulties in areas like thinking, moving, communicating and so on. And they’ll watch how your child interacts with others.
You might meet with all the team members 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 at a later time.
The professionals might also visit the 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.
Most children will also have a language assessment by a speech pathologist.
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 paediatrician can refer you to another professional (like a psychologist or speech pathologist) to confirm the diagnosis. 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, 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, it can help to ask:
- 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?
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 worry about what and how much to tell your child.
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 don’t be afraid 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 differently to being diagnosed.
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’.
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 better understand your child.