Late autism spectrum disorder diagnosis: older children and teenagers

Late autism spectrum disorder diagnosis: older children and teenagers

Why some children get a late autism diagnosis

Many children with autism spectrum disorder (ASD) are diagnosed in early childhood. But for others, the signs might not be as clear. It might not be until they're at primary school or even secondary school that the question of ASD 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.

Signs of ASD in older children and teenagers can include having very strong or unusual interests, or having difficulty taking turns in conversations or making and keeping friends. Teenagers with ASD might also have difficulty coping with schoolwork or feel anxious.

What an autism diagnosis means for your child

You might wonder whether getting and having an autism spectrum disorder (ASD) 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 her. But it might help you and your child understand why she's having difficulties.

A diagnosis describes your child's abilities, difficulties and needs. And it can help guide treatment and intervention for your child and help your child get services and funding to support his development - for example, extra help at school.

How autism spectrum disorder is diagnosed in older children and teenagers

There's no single test for diagnosing autism spectrum disorder (ASD) 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
  • 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 lots of specialists work with your child, it gives your child the best chance of an accurate diagnosis. It also helps to develop the best treatment plan.

A multidisciplinary team will usually include a paediatrician or child psychiatrist, a psychologist and a speech pathologist. 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 what your child does and how she is now, and how she's been in the past. They'll measure your child's strengths and weaknesses in areas like thinking, moving, communicating and so on. And they'll watch how she 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 your child's school to see how he 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.

When diagnosing ASD, professionals like psychiatrists and psychologists use the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). This tool breaks down the signs and symptoms of ASD into categories and says how many of these signs must be present in each category to get a definite diagnosis of ASD for your child. DSM-5 also ranks the severity of symptoms.

Funding for assessment and diagnosis of autism spectrum disorder

You can have your child assessed for autism spectrum disorder (ASD) 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 a long waiting list.

The other option is to be assessed privately. A paediatrician or psychiatrist 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 for four assessment sessions. This rebate helps with some of the costs of the assessment, 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 your child about an autism diagnosis

If your child is in the process of being diagnosed, or has a new autism spectrum disorder (ASD) diagnosis, you might worry about what and how much to tell her.

Your child will probably have questions about what's going on. His questions can guide what you tell him - just answer them as honestly as you can, at a level he'll understand.

Older children and teenagers with ASD 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 she has an excellent memory, is good with numbers or is very kind to animals. It's also OK to talk about the things that she finds challenging, like making friends.

All children are different and will react differently to being diagnosed. Your child might feel relieved that he has a diagnosis. He can use the diagnosis as a way to understand parts of himself and to help with the things he finds difficult. Or your child might need time to come to terms with the new information. He might even feel scared.

Some older children and teenagers might find it difficult to adjust to having a diagnosis. Children who were diagnosed when they were younger have grown up with their diagnoses as part of who they are. But an older child can feel confused about who she is now. For example, she might feel split between a new 'additional needs' culture and her 'old' self.

Talking with other people
Talking about your child's 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 - but getting things out in the open can really help you and your child.

There are lots of books about explaining ASD to children. Your state or territory autism association should be able to give you a list.