Autism and a meaningful life

Autism and a meaningful life

We’ve come leaps and bounds in our understanding of autism in the last few decades, but there are a number of important questions we still need to answer. For instance, how can early diagnosis promote better outcomes? How can we increase the well-being of people with autism by opening access to employability? And what does a meaningful life look like for somebody with autism?

We spoke with Professor Cheryl Dissanayake, founding Director of La Trobe’s Olga Tennison Autism Research Centre, to hear her answers to these essential questions.

La Trobe’s Professor Cheryl Dissanayake: “One of the earliest things we try to do is to get children with autism to attend to other people, so they can learn from them.”

Can you tell me a bit about detection of autism in children?

The most common sign that gets children into a diagnostic pathway is delay in language development which becomes really evident at around 24-months. Children start saying single words from about 12 months and by 18 months their words really comes through.

When a child isn’t speaking by that age, people might say ‘oh he’s a boy’ and think he’s just a bit slow in developing speech.

Then by 24 months when language hasn’t developed, children begin to get referred, but it’s already pretty late. And then parents go on the trail of seeing different clinicians who may or may not recognise what’s going on. Often it’s not until about 3 or 4 until the child gets a formal diagnosis.

Is childhood diagnosis of autism a recent phenomenon? How did it work a generation ago?

Well, in many cases there was no diagnosis, and in other cases there was a late diagnosis. When I came into the field there was a mean age of around 6 or 7 for diagnosis. Now we’re at 4 years. But the mean age really should be around 24 months.

Do children with autism learn differently?

The way that a typically developing child learns is from other people. That’s why children learn so fast – the typically developing child is all eyes. They look at all of the social things that are happening in their world.

Say you give a baby an object. Then you give them a second object, but this one is labelled. As early as 12 months, the baby will play more with the labelled object. They already know that the object you’ve labelled has more meaning. They know that you think that object is more important. That’s how socially clued in they are.

They come into the world hardwired to respond to social stimuli like faces and voices. So if a baby is born without that preference to respond to people, they’re behind the 8 ball.

Early intensive behavioural intervention is about getting that child learning, catching them up, making the social world relevant so that the child can begin to learn from other people. One of the earliest things we try to do is to get them to attend to other people, so they can learn from them.

What might a meaningful life look like for someone with autism?

I think we, as a community, need to ask that question! What does a meaningful life look like for someone on either end of the spectrum? What is a meaningful life? It may or may not be very different for someone with autism. Either way, how can we open access for that person in the community? How can we find a place for that person so they can contribute?

When you think about someone who is in a wheelchair, a ramp will solve access problems. But what if someone’s disability is more hidden? If someone is non-verbal, it doesn’t mean they’re not intelligent! Some might have impaired cognition – there are lots of varied levels of ability across the autism spectrum.

We should all feel like we can contribute. It’s about creating opportunities so that everyone can contribute to the best of their ability. With early diagnosis and early intervention, we’re just trying to increase that capacity to be able to participate more fully and contribute which has knock on effects on well-being.

Well-being is very important. You need meaning in your day to day life. You can’t have well-being without feeling useful in some way. It’s a huge question.

It’s also about the ability to allow people to participate and challenging views on that. The inclusion of autistic people in mainstream settings is important.

Inclusion can be a double edged sword – we’re talking about including differently abled children and people, including people with autism, in our schools and workplaces, but they can have a hard time there. Sometimes they can be targets of bullying.

But that’s the benefit of intervening early and getting children into inclusive settings early. This also means that typically developing children at 2 or 3 are learning about difference. Toddlers can learn this. There are no easy answers though.

What’s the one thing you want people to know about your research at OTARC?

The target of our research is to promote better outcomes. For people with autism, for families, for society. As you know, the best reflection of a civilized society is how you treat your most vulnerable. That means your young, your disabled and your aged.

We want our research to impact the quality of people’s lives.

Learn more about La Trobe’s autism research through our Olga Tennison Autism Research Centre, which celebrates its 10th anniversary in 2018.