Swedish climate activist Greta Thunberg describes herself as having Asperger’s while others on the autism spectrum, such as Australian comedian Hannah Gatsby, describe themselves as “autistic”. But what’s the difference?

Today, the previous diagnoses of “Asperger’s disorder” and “autistic disorder” both fall within the diagnosis of autism spectrum disorder, or ASD.

Autism describes a “neurotype” – a person’s thinking and information-processing style. Autism is one of the forms of diversity in human thinking, which comes with strengths and challenges.

When these challenges become overwhelming and impact how a person learns, plays, works or socialises, a diagnosis of autism spectrum disorder is made.

Where do the definitions come from?

The Diagnostic and Statistical Manual of Mental Disorders (DSM) outlines the criteria clinicians use to diagnose mental illnesses and behavioural disorders.

Between 1994 and 2013, autistic disorder and Asperger’s disorder were the two primary diagnoses related to autism in the fourth edition of the manual, the DSM-4.

In 2013, the DSM-5 collapsed both diagnoses into one autism spectrum disorder.

How did we used to think about autism?

The two thinkers behind the DSM-4 diagnostic categories were Baltimore psychiatrist Leo Kanner and Viennese paediatrician Hans Asperger. They described the challenges faced by people who were later diagnosed with autistic disorder and Asperger’s disorder.

Kanner and Asperger observed patterns of behaviour that differed to typical thinkers in the domains of communication, social interaction and flexibility of behaviour and thinking. The variance was associated with challenges in adaptation and distress.

Between the 1940s and 1994, the majority of those diagnosed with autism also had an intellectual disability. Clinicians became focused on the accompanying intellectual disability as a necessary part of autism.

The introduction of Asperger’s disorder shifted this focus and acknowledged the diversity in autism. In the DSM-4 it superficially looked like autistic disorder and Asperger’s disorder were different things, with the Asperger’s criteria stating there could be no intellectual disability or delay in the development of speech.

Today, as a legacy of the recognition of the autism itself, the majority of people diagnosed with autism spectrum disorder – the new term from the DSM-5 – don’t a have an accompanying intellectual disability.

What changed with ‘autism spectrum disorder’?

The move to autism spectrum disorder brought the previously diagnosed autistic disorder and Asperger’s disorder under the one new diagnostic umbrella term.

It made clear that other diagnostic groups – such as intellectual disability – can co-exist with autism, but are separate things.

The other major change was acknowledging communication and social skills are intimately linked and not separable. Rather than separating “impaired communication” and “impaired social skills”, the diagnostic criteria changed to “impaired social communication”.

The introduction of the spectrum in the diagnostic term further clarified that people have varied capabilities in the flexibility of their thinking, behaviour and social communication – and this can change in response to the context the person is in.

Why do some people prefer the old terminology?

Some people feel the clinical label of Asperger’s allowed a much more refined understanding of autism. This included recognising the achievements and great societal contributions of people with known or presumed autism.

The contraction “Aspie” played an enormous part in the shift to positive identity formation. In the time up to the release of the DSM-5, Tony Attwood and Carol Gray, two well known thinkers in the area of autism, highlighted the strengths associated with “being Aspie” as something to be proud of. But they also raised awareness of the challenges.

What about identity-based language?

A more recent shift in language has been the reclamation of what was once viewed as a slur – “autistic”. This was a shift from person-first language to identity-based language, from “person with autism spectrum disorder” to “autistic”.

The neurodiversity rights movement describes its aim to push back against a breach of human rights resulting from the wish to cure, or fundamentally change, people with autism.

The movement uses a “social model of disability”. This views disability as arising from societies’ response to individuals and the failure to adjust to enable full participation. The inherent challenges in autism are seen as only a problem if not accommodated through reasonable adjustments.

However the social model contrasts itself against a very outdated medical or clinical model.

Current clinical thinking and practice focuses on targeted supports to reduce distress, promote thriving and enable optimum individual participation in school, work, community and social activities. It doesn’t aim to cure or fundamentally change people with autism.

A diagnosis of autism spectrum disorder signals there are challenges beyond what will be solved by adjustments alone; individual supports are also needed. So it’s important to combine the best of the social model and contemporary clinical model.

Andrew Cashin, Professor of Nursing, School of Health and Human Sciences, Southern Cross University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Aged care financing is a vexed problem for the Australian government. It is already underfunded for the quality the community expects, and costs will increase dramatically. There are also significant concerns about the complexity of the system.

In 2021–22 the federal government spent A$25 billion on aged services for around 1.2 million people aged 65 and over. Around 60% went to residential care (190,000 people) and one-third to home care (one million people).

The final report from the government’s Aged Care Taskforce, which has been reviewing funding options, estimates the number of people who will need services is likely to grow to more than two million over the next 20 years. Costs are therefore likely to more than double.

The taskforce has considered what aged care services are reasonable and necessary and made recommendations to the government about how they can be paid for. This includes getting aged care users to pay for more of their care.

But rather than recommending an alternative financing arrangement that will safeguard Australians’ aged care services into the future, the taskforce largely recommends tidying up existing arrangements and keeping the status quo.

No Medicare-style levy

The taskforce rejected the aged care royal commission’s recommendation to introduce a levy to meet aged care cost increases. A 1% levy, similar to the Medicare levy, could have raised around $8 billion a year.

The taskforce failed to consider the mix of taxation, personal contributions and social insurance which are commonly used to fund aged care systems internationally. The Japanese system, for example, is financed by long-term insurance paid by those aged 40 and over, plus general taxation and a small copayment.

Instead, the taskforce puts forward a simple, pragmatic argument that older people are becoming wealthier through superannuation, there is a cost of living crisis for younger people and therefore older people should be required to pay more of their aged care costs.

Separating care from other services

In deciding what older people should pay more for, the taskforce divided services into care, everyday living and accommodation.

The taskforce thought the most important services were clinical services (including nursing and allied health) and these should be the main responsibility of government funding. Personal care, including showering and dressing were seen as a middle tier that is likely to attract some co-payment, despite these services often being necessary to maintain independence.

The task force recommended the costs for everyday living (such as food and utilities) and accommodation expenses (such as rent) should increasingly be a personal responsibility.

Making the system fairer

The taskforce thought it was unfair people in residential care were making substantial contributions for their everyday living expenses (about 25%) and those receiving home care weren’t (about 5%). This is, in part, because home care has always had a muddled set of rules about user co-payments.

But the taskforce provided no analysis of accommodation costs (such as utilities and maintenance) people meet at home compared with residential care.

To address the inefficiencies of upfront daily fees for packages, the taskforce recommends means testing co-payments for home care packages and basing them on the actual level of service users receive for everyday support (for food, cleaning, and so on) and to a lesser extent for support to maintain independence.

It is unclear whether clinical and personal care costs and user contributions will be treated the same for residential and home care.

Making residential aged care sustainable

The taskforce was concerned residential care operators were losing $4 per resident day on “hotel” (accommodation services) and everyday living costs.

The taskforce recommends means tested user contributions for room services and everyday living costs be increased.

It also recommends that wealthier older people be given more choice by allowing them to pay more (per resident day) for better amenities. This would allow providers to fully meet the cost of these services.

Effectively, this means daily living charges for residents are too low and inflexible and that fees would go up, although the taskforce was clear that low-income residents should be protected.

Moving from buying to renting rooms

Currently older people who need residential care have a choice of making a refundable up-front payment for their room or to pay rent to offset the loans providers take out to build facilities. Providers raise capital to build aged care facilities through equity or loan financing.

However, the taskforce did not consider the overall efficiency of the private capital market for financing aged care or alternative solutions.

Instead, it recommended capital contributions be streamlined and simplified by phasing out up-front payments and focusing on rental contributions. This echoes the royal commission, which found rent to be a more efficient and less risky method of financing capital for aged care in private capital markets.

It’s likely that in a decade or so, once the new home care arrangements are in place, there will be proportionally fewer older people in residential aged care. Those who do go are likely to be more disabled and have greater care needs. And those with more money will pay more for their accommodation and everyday living arrangements. But they may have more choice too.

Although the federal government has ruled out an aged care levy and changes to assets test on the family home, it has yet to respond to the majority of the recommendations. But given the aged care minister chaired the taskforce, it’s likely to provide a good indication of current thinking.

Hal Swerissen, Emeritus Professor, La Trobe University

This article is republished from The Conversation under a Creative Commons license. Read the original article.