New autism diagnosis guidelines miss the mark on how best to help children with developmental problems

Autism has become a default consideration for any child who struggles socially, behaviourally, or with sensory stimuli. from

The first national guidelines for diagnosing autism were released for public consultation last week. The report by research group Autism CRC was commissioned and funded by the National Disability Insurance Scheme (NDIS) in October 2016.

The NDIS has taken over the running of federal government early intervention programs that provide specialist services for families and children with disabilities. In doing so, they have inherited the problem of diagnostic variability. Biological diagnoses are definable. The genetic condition fragile X xyndrome, for instance, which causes intellectual disability and development problems, can be diagnosed using a blood test.

Autism diagnosis, by contrast, is imprecise. It’s based on a child’s behaviour and function at a point in time, benchmarked against age expectations and comprising multiple simultaneous components. Complexity and imprecision arise at each stage, implicit to the condition as well as the process. So, it makes sense the NDIS requested an objective approach to autism diagnosis.

Read more: The difficulties doctors face in diagnosing autism

The presumption of the Autism CRC report is that standardising the method of diagnosis will address this problem of diagnostic uncertainty. But rather than striving to secure diagnostic precision in the complexity and imprecision of the real world, a more salient question is how best to help children when diagnostic uncertainty is unavoidable.

What’s in the report?

The report recommends a two-tiered diagnostic strategy. The first tier is used when a child’s development and behaviour clearly meet the diagnostic criteria.

The process proposed does not differ markedly from current recommended practice, with one important exception. Currently, the only professionals who can “sign off” on a diagnosis of autism are certain medical specialists such as paediatricians, child and adolescent psychiatrists, and neurologists. The range of accepted diagnosticians has now been expanded to include allied health professionals such as psychologists, speech pathologists and occupational therapists.

This exposes the program to several risks. Rates of diagnosed children may further increase with greater numbers of diagnosticians. Conflict of interest may occur if diagnosticians potentially receive later benefit as providers of funded treatment interventions. And while psychologists and other therapists may have expertise in autism, they may not necessarily recognise the important conditions that can present similarly to it, as well as other problems the child may have alongside autism.

The new autism diagnosis guidelines expand the types of health professionals who can ‘sign off’ on a diagnosis. from

The second recommended tier of diagnosis is for complex situations, when it is not clear a child meets one or more diagnostic criteria. In this case, the report recommends assessment and agreement by a set of professionals – known as a multidisciplinary assessment. This poses important challenges:

  • Early intervention starts early. Multidisciplinary often means late, with delays on waiting lists for limited services. This is likely to worsen if more children require this type of assessment.

  • Multidisciplinary assessments are expensive. If health systems pay, capacity to subsequently help children in the health sector will be correspondingly reduced.

  • Groups of private providers may set up diagnostic one-stop shops. This may inadvertently discriminate against those who can’t pay and potentially bias towards diagnosis for those who can.

  • Multidisciplinary assessments discriminate against those in regional and rural areas, where professionals are not readily available. Telehealth (consultation over the phone or computer) is a poor substitute for direct observation and interaction. Those in rural and regional areas are already disadvantaged by limited access to intervention services, so diagnostic delays present an additional obstacle.

A diagnostic approach reflects a deeper, more fundamental problem. Methodological rigour is necessary for academic research validity, with the assumption autism has distinct and definable boundaries.

But consider two children almost identical in need. One just gets over the diagnostic threshold, the other not. This may be acceptable for academic studies, but it’s not acceptable in community practice. An arbitrary diagnostic boundary does not address complexities of need.

We’re asking the wrong question

The federal government’s first initiative to fund early intervention services for children diagnosed with autism was introduced in 2008. The Helping Children With Autism program provided A$12,000 for each diagnosed child, along with limited services through Medicare.

The Better Start program was introduced later in 2011. Under Better Start, intervention programs also became available for children diagnosed with cerebral palsy, Down syndrome, fragile X syndrome and hearing and vision impairments.

While this broadened the range of disabilities to be funded, it did not address the core problem of discrimination by diagnosis. This is where children who have equal needs but who for various reasons aren’t officially diagnosed are excluded from support services. Something is better than nothing, however, and these programs have helped about 60,000 children at a cost of over A$400 million.

Yet the NDIS now also faces a philosophical challenge. The NDIS considers funding based on a person’s ability to function and participate in life and society, regardless of diagnosis. By contrast, entry to both these early intervention programs is determined by diagnosis, irrespective of functional limitation.

Read more: Understanding the NDIS: will parents of newly diagnosed children with disability be left in the dark?

While funding incentives cannot change prevalence of fragile X syndrome in our community (because of its biological certainty), rates of autism diagnoses have more than doubled since the Helping Children with Autism program began in 2008. Autism has become a default consideration for any child who struggles socially, behaviourally, or with sensory stimuli.

Clinicians have developed alternative ways of thinking about this “grey zone” problem. One strategy is to provide support in proportion to functional need, in line with the NDIS philosophy.

Another strategy is to undertake response-to-intervention. This is well developed in education, where support is provided early and uncertainty is accepted. By observing a child’s pattern and rate of response over time, more information emerges about the nature of the child’s ongoing needs.

The proposed assessment strategy in the Autism CRC report addresses the question, “does this child meet criteria for autism?”. This is not the same as “what is going on for this child, and how do we best help them?”. And those are arguably the more important questions for our children.

This article was co-authored by Dr Jane Lesslie, a specialist developmental paediatrician. Until recently she was vice president of the Neurodevelopmental and Behavioural Paediatric Society of Australasia.

The Conversation

Michael McDowell has received funding from the NHMRC, and several pharmaceutical companies for research and speaking engagements. He was the Foundation President of the NBPSA, the Australasian professional society for Developmental Paediatricians, and remains affiliated with this organisation.

More cyclists are ending up in hospital with serious injuries, so we need to act now

Serious injury rates are rising in cyclists, and are associated with significant disability and economic costs. from

Cyclists are suffering more serious injuries in road crashes than ever before, leading to significant disability, our new study shows.

But what is less clear is what’s behind these injuries, which are occurring as the number of people who died in road traffic crashes has fallen.

In our study published today in the Medical Journal of Australia, we investigated deaths and serious injuries after traffic crashes in Victoria from 2007 to 2015.

We looked at whether deaths and serious injury rates for all road users changed over time. We also looked at the disability and economic costs of these injuries.

Read more: People take to their bikes when we make it safer and easier for them

The total number of deaths from road traffic crashes fell over the study period. But rates of serious road traffic injuries did not.

There were 10,092 road traffic deaths and serious injuries over the course of our study. This led to over 77,000 disability-adjusted life years (a measure of overall disability burden, expressed as the number of years lost to disability or early death).

The estimated health costs associated with these road traffic injuries (known as “health loss” costs) was more than A$14 billion.

The rates of crashes resulting in serious injury in cyclists rose 8% a year. from

Most concerning was the rise in serious injury rates in cyclists, which increased 8% a year. In fact, the absolute number of cases more than doubled over the nine-year study period.

These injuries are often severe, including head injuries, spine injuries and fractures of the pelvis and limbs. They often lead to significant disability.

Over the course of our study, a rise in such serious injuries led to a 56% increase in disability-adjusted life years; health costs for cyclists were more than A$700 million.

Why are cyclists’ serious injuries rising?

However, it is not clear what’s driving these increases in serious injuries.

In a previous study, we interviewed cyclists admitted to hospital after a crash. Of the crashes that occurred on the road, 52% involved another road user, most commonly a motor vehicle.

A total of 22% of all on-road crashes also occurred while cyclists were riding in a marked bicycle lane, demonstrating they are not sufficient to completely protect cyclists. While these on-road bicycle lanes provide dedicated space for cyclists, riders remain close to motorists, and people in parked cars opening doors.

A total of 48% of on-road crashes only involved a single cyclist. While we need more research to better understand the single cyclist-only crashes, researchers have previously found the condition of road surfaces, distraction, mechanical issues and speed are possible factors.

Are more people cycling?

One of the limitations of our study was that we couldn’t adjust for the amount of time or distance cyclists travel each year. Unfortunately, we have very limited data on this in Australia.

The National Cycling Participation Survey is a telephone survey that asks how many times people cycled in the past week, month or year. The 2017 results showed the proportion of people who had cycled in the past month declined from 27% in 2011 to 22% in 2017.

While cycling participation overall may have declined, there may be an increase in the overall time spent riding, or the number of cyclists riding on the road, compared to on bicycle paths, for example.

So, what does this mean for cyclists?

So, is the message from our study, “don’t cycle”? No, not at all. The health and economic benefits of cycling are well established. A recent UK study demonstrated that cycling to work was associated with a 41% lower risk of early death compared to commuting by car or public transport.

Read more: Better health is only a short bike ride away

And while cycling-related injury rates are on the rise, they made up only 11% of serious road traffic injuries.

It is clear we need greater investment in cyclist safety. We know being concerned about safety is one of the biggest barriers to people cycling.

Interactions with motor vehicles – not just collisions, but also being in the presence of and close proximity to motor vehicles – and the absence of appropriate cycling infrastructure are some of the most common barriers people mention.

Read more: Cars, bicycles and the fatal myth of equal reciprocity

Dedicated bike lanes that are separated from traffic are an effective way to reduce serious injury.

While we need to invest more in cycling-specific infrastructure (like bike lanes and bike paths) it is often not feasible to have this across an entire road network. So, we need a multi-faceted approach to improving safety for cyclists.

Reducing the speed limit in residential streets to 30km/h has been proposed as a way to improve safety for vulnerable road users, and a trial has recently been announced in inner Melbourne.

We also need to improve the culture around cyclists as legitimate road users, through changes in legislation, education and training for all road users.

Given the rising injury rates in cyclists, we need government and road safety organisations to act now to provide a safer environment for cyclists.

The Conversation

Ben Beck receives funding from the National Health and Medical Research Council. The Victorian State Trauma Registry is funded by the Department of Health and Human Services, the state Government of Victoria and the Transport Accident Commission.

How the NDIS is using the market to create housing for people with disability

The Grocon-built 77-apartment Greenwich Fairfield development in Melbourne includes ten apartments for people with disability. Artist's impression, Grocon, Author provided

Housing for people with disability is being transformed from grants-based funding to a market-based system where people with disabilities control their own funding. This market has the potential to grow in size by around A$5 billion over the next five years in the National Disability Insurance Scheme (NDIS).

PwC and the Summer Foundation recently released a paper called NDIS Specialist Disability Accommodation: Pathway to a mature market. The paper provides a vision of a mature, properly functioning disability housing market and outlines the pathway to reach it.

Further reading: NDIS housing rules for people with a disability could be life-changing

The importance of getting this market to work

Creating housing is one of the most important tasks for the NDIS. It’s especially important for the young people living in aged care and the adults with disability living with ageing parents.

More than 6,200 young people are living in aged care, with 2,000 young people entering aged care annually. In some parts of the country, young people occupy more than 20% of all aged care places.

The NDIS has the resources and mandate to fix this problem through the Specialist Disability Accommodation (SDA) payment policy. The NDIS has an annual recurrent budget of $700 million for SDA. This housing funding is designed only for people under 65 with very high disability support needs. This equates to around 6% of NDIS participants – 28,000 people.

Author provided

Further reading: To get young people out of nursing homes, we need to back up the NDIS with housing – here’s how

The SDA policy is ambitious. The value of all SDA properties across Australia is expected to total around $11.5 billion. The breakdown would be:

  • $2.5 billion to create housing for the 6,000 young people in aged care;

  • $2.5 billion to create housing for others with unmet needs for SDA; and

  • $6.5 billion to replace, refurbish and manage disability housing stock that existed prior to the NDIS.

How this market works

The PwC and Summer Foundation paper provides a vision for how this market will operate once it is mature.

The report shows how funding for housing provided directly to people with disability creates a user-driven market. People with disability will be empowered to decide where they live and who they live with.

NDIS participants with high support needs will receive annual funding to pay for the cost of their housing. The SDA payment is calculated based on the dwelling’s location, size and level of accessibility. The housing payments are designed to cover the costs incurred in providing the bricks and mortar and offer a return on investment at market rates (5-12%).

Critically, the provider bears the vacancy risk should they fail to find a tenant – only when the dwelling is occupied are SDA payments made. In this competitive SDA market, housing providers will compete to deliver the best outcomes for tenants, which include being close to shops and transport.

Progress over the past year

The government and the National Disability Insurance Agency (NDIA), which oversees the NDIS, have done a tremendous job in setting up this new funding stream. The new SDA rules under the NDIS Act took effect in March 2017. We are moving from policy design to implementation.

We now need to make sure that this well-funded and well-designed SDA payment delivers new housing on the ground.

The market is responding, with NDIS housing being built in cities across Australia.
Large retail banks and superannuation funds are reviewing SDA transactions. Large developers are including SDA builds in some new developments.

Summer Housing (Summer Foundation’s sister entity) opened ten new SDA apartments in the Hunter Region of New South Wales in mid-2016. Contracts were recently signed for another ten apartments designed for people with disability throughout a 77-apartment development built by Grocon in Fairfield, Melbourne.

Summer Housing aims to build 300 apartments through SDA – meeting the needs of less than 5% of all young people in aged care.

Summer Housing has opened ten new SDA apartments in the Hunter region.

What will it take to meet the need more quickly?

Over the next five years, 16,000 new or refurbished SDA places are needed. Around 650-700 new SDA places were created or commissioned in the past 12 months. Only 250-300 of these are for unmet demand. The remaining 400 are to rebuild existing, outdated government disability housing stock.

The market needs to reach scale more quickly. The NDIA and government need to listen to and actively steward this fledgling market.

The government sector can do three things to accelerate progress toward a mature market:

  1. The federal government can provide certainty to the market about how long these prices are guaranteed for and how any price reviews occur.

  2. The NDIA can provide regular and good-quality information on demand for SDA.

  3. Local and state governments can mandate targets for SDA in major developments.

Beyond these actions, there is the potential to link SDA with the federal government’s commitment to support a strong Social Impact Investing market in Australia. Social impact investments generate measurable social outcomes, while delivering a financial return to the investor.

Robust evaluation and evidence-based decision-making are integral to social impact investing. The NDIS approach will provide solid evidence that well-located housing with accessible design and technology will increase the quality of life and independence of NDIS participants, thereby reducing the NDIS’s lifetime care costs and liability.

The SDA market has the potential to demonstrate how government can leverage large amounts of capital from superannuation to fund other forms of affordable housing.

Further reading: The forgotten 660,000 locked out of home ownership

Laying the foundation for a revolution

For people with the highest levels of disability, the NDIS housing payment will bridge the gap between what people with disability can reasonably afford and the cost of building highly accessible housing.

This policy lays the foundation for developing the range and scale of housing needed to resolve the issue of young people in nursing homes in Australia.

The next step is for government to work with stakeholders in the market — including investors and the housing sector — to create the revolution in housing that Australians with a disability and their families have been waiting for.

The Conversation

Di Winkler is the CEO of the Summer Foundation Ltd and a director of Summer Housing Ltd and Livable Housing Australia.

George Taleporos is the Policy Manager at the Summer Foundation Ltd.

Luke Bo'sher is the Head of Policy and Strategy at the Summer Foundation Ltd.

Think disability is a tragedy? We pity you

Disability prejudice in the classroom can teach children early on that some lives are more worthy than others. (Shutterstock)

You pick your child up at school and see her hanging out with a child with autism. Your reaction is: A) pride, B) confusion, C) concern, D) pity. If you said yes to any of the above you could have ableism.

In schools, disability prejudice impacts opportunities for connection and learning for all children. Another word for it is “ableism” — a form of discrimination that favours able-bodied people. It has long permeated our culture through stereotypes — from hunchback movie villains to the idea of the “supercrip” that defies all odds.

Ableism contributes to the isolation of children with disabilities. It encourages students without disabilities to see relationships with their disabled peers as helper-helpee relationships, rather than reciprocal friendships. Worst of all, ableism teaches children early on that some lives are more worthy than others. This can have deadly consequences — evidenced by the eugenics movement of the early 20th century, and by more recent events such as the 2016 massacre in a home for the disabled in Japan.

As a society, we need to say no to ableism. We must see disability for what it is — a natural part of human experience, rather than something to be feared.

We are two university professors, working in disability ethics and in education, who met in high school. Our friendship was very nearly destroyed by ableism. We offer our story as an illustration — of how disability prejudice can afflict all kids, and how to avoid it, in the classroom and at home.

A “normal” friend

We were both giving mainstream education one last chance when we met in Grade 11 English at Alberta College. What brought us together was our mutual (warped) sense of humour and bewilderment over why some people thought being just like everyone else was a good thing.

So, how did ableism almost destroy our friendship?

Well, there was the explicit ableism. A few months after we met, a nurse of Heidi’s told her, “Michelle’s just helping you because she feels sorry for you. You can’t have a normal friend.” Heidi started to pull away. Michelle felt like she had done something wrong. Eventually, Heidi told Michelle what the nurse had said. That was the first of many close encounters we’ve had with ableism.

Doctor Loveless in the TV show The Wild Wild West is a villainous dwarf. (Wikimedia Commons)

Then there were people who didn’t bother to ask Heidi to repeat herself when they did not understand her. Others would simply ignore Heidi and talk to Michelle. When we’d go to restaurants, servers asked Michelle what Heidi wanted to order. Most memorably, there was the shopping mall Santa — who asked Michelle what Heidi’s name was.

But there was also the implicit ableism. Michelle went from being seen as poorly behaved to being seen as angelic, just because she’d befriended Heidi, the disabled kid. Yet Heidi was given no credit for getting Michelle to school on time every day.

Michelle knew she needed to take Heidi’s coat off and take her books out. (This was the 1980s; Heidi didn’t have an aide at school.) Heidi developed her very own behaviour modification program. She ran over Michelle’s feet with her very heavy power chair if she was late. She offered her a coffee or cookie from the cafeteria if she was on time.

Learning together

Heidi had an amazing occupational therapist that worked with both of us. She booked us an independent living suite to learn how to take care of each other over a week. We learned how to cook together (which did result in a visit from the fire department). Michelle learned how to dress Heidi, feed her and take her to the washroom.

Heidi learned to tell Michelle to drink her coffee before she attempted to help her with anything. “It’s not safe before your coffee. I can wait. Go drink your coffee.” By the end of Grade 11, we flew to Vancouver and spent five days on our own.

The blindness of superhero Daredevil, from Marvel Comics, has enhanced his other senses to superhuman levels. (Shutterstock)

We grew together and encouraged each other to do what many did not expect us to do — go to university and eventually become academics. We are in different fields but have a similar commitment to expanding research-based public conversations and policy aimed at creating more equitable and inclusive societies.

Today, 33 years after we met, we see some changes in attitudes, but we still often encounter deeply entrenched ableism. This is not surprising given that from earliest childhood, we are inundated with disability stereotypes, such as telethon kids whose survival depends on the charity of able-bodied people. As we get older, we watch news stories about burdensome disabled people or the “supercrip” who achieves remarkable things. And many of the insults in the English language are based on disability.

How to de-ableize yourself

Approximately 15 per cent of the world’s population has a disability, and that number is increasing as the population ages. Most people will acquire disabilities at some point. Signatories of the Convention on the Rights of Persons with Disabilities agree to foster respect for the rights of people with disabilities from early childhood on.

But how realistic is it to expect able-bodied people to have the capacity to implement non-ableist policies and practices?

If we want to educate children about the harmfulness of ableism, we need to start with de-ableizing adults. There are many strategies teachers can use in the classroom — to promote inclusion, learning and relationships between students with and without disabilities. But this is not just the job of teachers. It starts at home.

Think about fears you have about disability and where those fears come from. Think about what values are at play in deciding what makes for a good school, workplace or community. How might the values be different if people with disabilites were at decision-making tables?

The Conversation

The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.