Most people are aware that Autism sits on a spectrum, with a range of potential symptoms which also vary in their severity. As explained here by Autism Awareness Australia, previous diagnoses such as Aspergers were replaced in 2013 by a single ‘umbrella’ diagnosis of autism spectrum disorder (ASD), with three severity categories (level 1, level 2 and level 3). We explore why this changed and what it means for diagnosis and support options for families in Australia today.
Today, a diagnosis of autism is very different to what it did 15 years ago. What hasn’t changed however is the fact that for each individual, autism, or ASD, will look different. The support that they will need will depend on a range of factors such as co-diagnosis, which are specific to that person.
A lot can also change as families make the journey from initial diagnosis and discover what support works for their child. Mable client Arahni talks about the lessons she’s learned since her son’s initial diagnosis almost 20 years ago – describing how he now lives independently with the support of eight different support workers on the Mable platform who work with him in different aspects of his life.
How is ASD now diagnosed?
As explained here by the Raising Children Network, a diagnosis of ASD is determined on the basis of difficulties in two areas – social communication, and restricted, repetitive behaviour or interests.
Social communication can include difficulty understanding and responding to non-verbal communication, challenges responding appropriately in social situations and difficulty developing and maintaining relationships with others.
Repetitive or restrictive behaviours might include repetitive use of speech or movement, narrow or intense focus on limited areas of interest or being easily upset by changes to routine or the familiar.
The severity categories (Levels 1, 2 and 3) are now used by professionals like speech pathologists, psychologists and paediatricians to determine how much support a family might need.
Why did the diagnosis of Autism change?
According to Spectrum News, the DSM-5 (the authoritative guide for clinicians in the USA and much of the world on the diagnosis of mental disorders) adopted the idea of a continuous spectrum following studies throughout the 90s which aimed to identify specific ‘autism genes’. The difficulty in doing this led experts to conclude that it would be best to characterize autism as an all-inclusive diagnosis, ranging from mild to severe.There was also concern about the lack of consistency in how clinicians arrived at a diagnosis of autism, aspergers, or pervasive development disorder, after seeing a spike in autism diagnosis around the 2000s.
Here in Australia, the DSM-5 is one of the two manuals used. The other, published by the World Health Organisation, is the International Classification of Diseases: Classification of Mental and Behavioural Disorders 10th Revision (ICD-10). As reported by The Conversation, in June 2016, NDIA and the Cooperative Research Centre for Living with Autism (Autism CRC) commissioned the development of Australia’s first national guidelines for autism assessment and diagnosis which draws from these two manuals.
What do the levels of ASD indicate?
US-based organisation Autism Speaks uses the following examples to provide greater clarity on what the severity categories of ASD might mean for an individual.Someone diagnosed with Level 3 will generally require very substantial support. In relation to social communication, they may for example, have few words of intelligible speech and rarely initiate interaction. They may also only respond to very direct social approaches. They may be highly distressed changing focus or in coping with change.
An individual with Level 2 will still require substantial support. With regards to social interactions they may speak in simple sentences, interact around limited special interests and display unusual nonverbal communication. Restrictive and repetitive behaviours will appear frequently enough to be obvious to the casual observer and can interfere with functioning in a variety of contexts.
Someone with Level 1 will need some support; they might be able to speak in full sentences and engage in communication but have difficulty with to-and-fro conversation with others. They may have challenges making friends and inflexibility of behaviour can hamper their independence.
What is social communication disorder (SCD)?
While SCD is similar to ASD, with the former, someone might display fewer repetitive behaviours. If a child displays at least two repetitive behaviours, it could point to a diagnosis of ASD.
Finding the right support for your family
As a parent, a diagnosis of ASD can be both a relief and a shock and every family will respond in different ways. Autism Awareness Australia recommends trying to see diagnosis as a positive step forward and a way for you and your child to receive greater understanding and support. Listening to others who have been on the journey can also be helpful. The Parenting Spectrum podcast is a frank, touching and personal account of one family’s experiences through diagnosis and beyond.
Mable works with a number of clients who have found flexible, professional support from a team that they’ve chosen directly. We spoke with independent support worker Mike who currently provides social support to a number of clients with ASD, about how he discovers what works for his client.
“I find it important to build trust with your clients and find out what they like. If they like the Wiggles, I create activities to do with the Wiggles!
I build up trust by listening and building a rapport with my client. For example, one of my clients, when I first started supporting him, did not like going to shopping centres. In August I started talking about how we should buy Christmas presents for Mum and Dad. In December we went to the shopping centre for the first time. By making it a game and warming him to the idea in August, by December he was ready to give it a try.”
If you’re interested in learning about how you could use Mable to support someone living with ASD, learn more about our disability support options here