The spectrum of care

Autistic people are bracing for changes to NDIS eligibility under the new Thriving Kids reform. Pharmacists will play a critical role in providing care to individuals as they navigate these changes.

The diagnosis and support of autism in Australia is at a turning point, with rates of diagnosis rising and policies being fundamentally reshaped.

More than 290,000 Australians have a formal diagnosis of autism. However, experts say that figure is likely ‘substantially higher’ due to historical approaches to diagnosis, the time and cost involved in being assessed, and the fact that some people feel diagnosis isn’t the right path for them.¹

The emphasis on early intervention for autistic children has increasingly recognised that supports should be tailored to each child’s unique developmental needs rather than following a one-size-fits-all model, with evidence highlighting the role of family-centred and individualised approaches in improving outcomes for children and families.²

Historically, the categorisation of autism has focused on deficits. The term ‘neurodiversity’ moves away from this to an emphasis on neurological differences, says clinical pharmacist and neurodiversity advocate Yvette Anderson MPS, who has two sons who are neurodivergent.

‘We need to shift from the medical model, which focuses on fixing an individual with cures and treatments, to a social model of care, which focuses on neuroaffirming practices of accommodations, removal of barriers and recognising neurodiversity as human variation, not as a deficit,’ she says. 

New reforms

The paradigm shift in the perception of autism is reflected in policies that prioritise inclusion. Australia’s National Autism Strategy aims to improve outcomes across social and economic inclusion, diagnosis and services, and health and mental health.¹ The accompanying National Roadmap to Improve the Health and Mental Health of Autistic People 2025–2035 highlights persistent barriers to healthcare access and the need for system-wide reform.³

At the same time, proposed changes to NDIS eligibility and early-intervention pathways have sharpened debate about where autism sits between the health and disability systems. Children younger than 9 years account for about 23% of the NDIS’s roughly 740,000 participants, and 40% have a primary diagnosis of autism.⁴ The federal government’s Thriving Kids program, set to begin in October, will establish a ‘national system of support’ for children aged 8 years or younger with lower support needs, diverting them off the NDIS to community and mainstream support.⁵

The reform is part of a broader effort to slow ballooning annual NDIS expenditure growth from 22% to 8% by 1 July 2026.⁶

Impacts of care transformation

It’s been proposed that Thriving Kids will enable earlier connection to evidence-based services without requiring formal diagnostic thresholds while leveraging local community, health and education settings to deliver parenting supports, information, navigation and targeted allied health assistance. By intervening early when supports can have the greatest impact, the approach is designed to promote family-centred skill building and integrate services across sectors, reserving NDIS funding for children with significant disabilities.⁷

However, parliamentary inquiry evidence and sector feedback highlight several implementation and equity challenges, including workforce capacity constraints that may affect consistency and quality of service delivery, uncertainties in transitioning children from current to new systems, and the need for robust governance, data and evaluation frameworks to monitor outcomes.⁸

Stakeholders also emphasise the importance of ensuring equitable access for priority populations, such as regional, remote and culturally diverse families, and clear coordination between federal, state and territory delivery mechanisms to avoid potential gaps in continuity of support.⁹

In the face of this uncertainty, pharmacists are increasingly recognised as accessible, trusted health professionals with a role to play in supporting autistic people and their families. This support is rarely a single intervention, but about recognising patterns, anticipating barriers and providing continuity in a system that threatens to become increasingly fragmented.

The Spectrum Pharmacist

Before Bendigo pharmacist Yvette Anderson’s eldest son began to show challenges with social interaction, autism was not something she had given much thought to. Like many pharmacists, her exposure to neurodevelopmental disorders extended little beyond medicines used for ADHD.

That changed when an early childhood educator raised concerns about her son’s development and he was later diagnosed with autism. ‘My lived experience has changed my professional practice in a tremendous way,’ Ms Anderson says. ‘I am acutely aware of hidden disabilities and mental health conditions, and the significant impact they can have on healthcare outcomes.’

In 2020, she launched The Spectrum Pharmacist, bringing together her professional expertise and lived experience. The initiative supports neurodivergent individuals, their families and carers by providing evidence-based, up-to-date information – promoting awareness and understanding, fostering interprofessional collaboration, and advocating for inclusion.

This year, she will launch SpectrumRx at PSA26 – a neurodiversity foundation training program for pharmacy teams.

‘The training for pharmacy practice includes 10 modules (up to 20 CPD points), and has two pathways: one for pharmacists, interns and students and one for pharmacy assistants. It was very important to me to include all pharmacy colleagues, not just pharmacists,’ Ms Anderson says.

‘The primary objective is to cultivate confidence, enhance knowledge and reduce stigma. It was very evident there was a need – and there were no pharmacy education programs, so I wrote one.’

Barriers to access

There is no single, universally accepted definition of autism, and no two people experience it the same way. Some are able to live fully independent lives, while others need varying levels of support, which may fluctuate across their lives or increase during periods of stress, illness or change. This too has led to inconsistency in approaches to diagnosis and care, and misconceptions among the community about what autism actually is.

Autistic people face significant inequalities compared to their neurotypical peers. They are 6 times more likely to be unemployed and experience ‘poorer physical and mental health than the general population, including greater risks of coexisting conditions, shorter life expectancy and premature death’.¹

A survey commissioned by Autism Spectrum Australia in 2025 found just half of Australians believe they have a good understanding of autism, with 45% saying their understanding is limited.¹⁰ Knowledge gaps are evident within pharmacy too: a 2019 cross-sectional evaluation of community pharmacists in Western Australia found only 35% (97 respondents) were classified as having ‘good knowledge’ of autism spectrum disorder.¹¹

Accessing, navigating and receiving safe and appropriate healthcare therefore presents a challenge, with health professionals and services ‘underequipped to meet the complex and often unique needs’ of autistic people. In an Australian study, researchers found that 79% of the 263 participants who were autistic reported at least one barrier to accessing healthcare. These included ‘fear, anxiety, embarrassment or frustration’ that kept participants from receiving primary care; trouble following up on care; difficulty translating medical information into concrete steps; difficulty identifying and reporting physical symptoms; and sensory and communication differences.¹²

Many of these barriers arise in everyday pharmacy practice, says PSA Professional Practice Pharmacist Sharon Ambalal MPS, who also has an autistic child.

‘The pharmacy environment can be overstimulating for autistic individuals. Cramped spaces, prescription waiting times, noise and general clutter can be overwhelming and distressing,’ she says.

‘As a result, even getting to the pharmacy can present a challenge. For children who rely on medicines to help them concentrate at school, or medicines to aid sleep, the red tape can be difficult to navigate and can have profound effects on day-to-day functioning and quality of life.’

Off-label medicines use

For many people with autism, medicines are a regular part of daily life, used to manage co-occurring conditions suchas ADHD, anxiety, epilepsy and sleep disturbance.

As diagnoses rise and autism is recognised well beyond childhood, pharmacists are increasingly likely to encounter patients with autism at every stage of life – often with complex medicines histories and uneven access to support.

There are no medicines that treat autism. Some autistic people use medicines to manage co-occurring conditions such as insomnia. One study found that around three-quarters of young autistic people have at least five comorbidities.¹³ Polypharmacy is common, occurring in around 34% of autistic patients receiving medicines.¹⁴

A review of Australian adults with an autism diagnosis found 72% were taking
at least one medicine.¹³ Medicines may include melatonin for sleep disturbance, psychostimulants and non-stimulants for ADHD, antidepressants and antipsychotics for anxiety or behavioural distress, antiepileptics for seizure disorders, and medicines for gastrointestinal conditions.

Off-label prescribing is common for autistic patients, says consultant pharmacist and NDIS-registered behaviour support practitioner Erin Colreavy MPS, particularly the use of benzodiazepines and antipsychotics to address behaviours such as agitation or aggression, or to improve sleep.

‘Recently, I have seen the prescription of olanzapine for agitation in two clients with [complex needs], without another diagnosis that warrants its prescribing (for example, schizophrenia), and risperidone prescribed for insomnia in another,’ she says.

Although she stresses that not all off-label prescribing is bad – and in fact is sometimes necessary – pharmacists are pivotal to ensure these medicines are being used safely. ‘Where medicines are prescribed off-label, this should be made clear to the person and their supports,’ Ms Colreavy says.

‘The indication will not align with those mentioned in the Consumer Medicines Information and other resources they may look at, such as a Google search. Medicines may be withheld or ceased due to a lack of information being provided about off-label use, which may lead to a negative outcome.’

Too much ‘set and forget’ prescribing

Medicines are often managed by someone other than the patient, such as a family member or NDIS-funded support worker, says Ms Colreavy, which can lead to long-term safety concerns. 

‘Those clients with more [complex needs] often slip through the cracks of our healthcare system, with a set-and-forget mentality applied to their medicines,’ she says. ‘Medicines may have been prescribed in childhood, perhaps even by a specialist such as a paediatrician or psychiatrist, but may continue into adulthood and beyond without a clear indication and/or review by a specialist or a GP who focuses on disability care.’

The use of chemical restraint is also a significant issue and is ‘much higher’ than in the general population, Ms Colreavy says.   

Communication is key

When Sharon Ambalal MPS was working as a locum, she was asked to administer a flu vaccine to a 15-year-old autistic boy. It was his second time in the pharmacy that week.

‘The pharmacist on duty was unable to perform the vaccination despite their best efforts, citing a lack of confidence,’ Ms Ambalal says. ‘It was a huge challenge for his mother to prepare him twice for the vaccination, using visuals, videos and positive reinforcement to explain the purpose and importance.’

Before taking the patient into the clinic room, Ms Ambalal asked the mother and son the best way to support his needs. They discovered some common ground – a shared love of the same soccer team – which helped to create trust and rapport.

‘We continued to address each sensory need on the patient’s terms and I administered the vaccine,’ she says. ‘Afterwards, I sat down with the pharmacist who experienced difficulty providing the vaccination and shared some tips. Had those tools been provided during immunisation training, the pharmacist would have felt more confident addressing the patient’s needs. It’s a perfect example of how we need to improve pharmacy practice to be more accessible.’

‘[Autistic] people are often prescribed antipsychotics to manage behaviours of concern and unfortunately doses may be well above the usual or recommended doses, even in comparison to those used for psychosis. Prescribing cascades are also common, with ‘medicines added on simply to manage adverse effects rather than re-evaluation of the client as a whole’. 

Pilots show pharmacists can do more

Credentialed pharmacist Adeline Tan MPS is co-designing a consumer resource with autistic people to help them navigate pharmacy services. Funded by a grant from the South Australian Office for Autism, the project aims to raise awareness of services such as medicines reviews, vaccinations and dose administration aids.

She says pharmacist-led models of care could be expanded to help address issues people with autism face. ‘A key priority is the expansion of neuroaffirming healthcare, alongside greater awareness of and access to medicines review services to ensure medicines are appropriate, effective and aligned with the person’s goals and daily functioning.’

She points to the dementia pharmacist outreach model funded by Country SA Primary Health Network and delivered through PSA’s SA/NT branch as a potential template. ‘This model takes a holistic approach, addressing not only medicine-related issues but also the broader health and support needs of the person and those who care for them,’ Ms Tan says. ‘There is strong potential for this model to be adapted and funded for other cognitive disabilities, including autism spectrum disorder.’

Personalised medicines, personalised care

Compounding can play an important role for autistic people with sensory differences. ‘This may involve masking a flavour or changing from a tablet to a suspension due to an aversion to swallowing or diagnosed dysphagia,’ Ms Colreavy says. It can also support safer dose reduction. ‘Smaller than commercially available doses may be optimal for reducing doses slowly to reduce the risk of withdrawal symptoms,’ she says, particularly for people with communication differences who may not be able to communicate adverse effects.

But medicines are only part of the picture. For Ms Ambalal, continuity and trust are central. ‘Due to communication and sensory differences, and diagnostic overshadowing, autistic individuals may not receive access to the same care and advice that neurotypical individuals receive,’ she says. ‘And accessing services and funding under the NDIS can be confusing and time-consuming, adding to carer burden … Pharmacists who recognise and respond to the needs of autistic people will develop better relationships and deliver dignified, convenient healthcare. A little bit of understanding goes a long way.’

References

1. Commonwealth of Australia Department of Social Services. National autism strategy 2025–2031. 2024. Available from: www.health.gov.au/sites/default/files/2025-07/national-autism-strategy-2025-2031.pdf

2. National Disability Insurance Agency. Evidence review: early interventions for children with autism. Available from: https://dataresearch.ndis.gov.au/research-and-evaluation/early-interventions-and-high-volume-cohorts/evidence-review-early-interventions-children-autism

3. Commonwealth of Australia Department of Health and Aged Care. National roadmap to improve the health and mental health of autistic people 2025–2035. 2025. Available from: www.health.gov.au/sites/default/files/2025-02/national-roadmap-to-improve-the-health-and-mental-health-of-autistic-people-2025-2035.pdf

4. National Disability Insurance Agency. Quarterly report to disability ministers. 2025. Available from: www.ndis.gov.au/publications/quarterly-reports

5. Commonwealth of Australia Department of Health, Disability and Ageing. Thriving Kids. 2025. Available from: www.health.gov.au/our-work/thriving-kids?language=en

6. National Disability Insurance Agency. NDIS growth target on track to be delivered. Available from: https://www.ndis.gov.au/news/10531-ndis-growth-target-track-be-delivered

7. Australian Psychological Society. Thriving Kids inquiry final report released. Available from: https://psychology.org.au/insights/thriving-kids-inquiry-final-report-released

8. Parliament of Australia House of Representatives Standing Committee on Health, Aged Care and Disability. Report into the Thriving Kids initiative: chapter 4 – developing the Thriving Kids initiative. Available from: https://www.aph.gov.au/Parliamentary_Business/Committees/House/Health_Aged_Care_and_Disability/ThrivingKidsinitiative/Report_into_the_Thriving_Kids_initiative/Chapter_4_-_Developing_the_Thriving_Kids_initiative

9. Aspect. Half of Australians admit limited autism understanding and a third unsure how to respond. 2025. Available from: www.aspect.org.au/news/half-of-australians-admit-limited-autism-understanding-and-a-third-unsure-how-to-respond

10. Knights E, Sunderland VB, Parsons R, et al. An evaluation of community pharmacists’ understanding of autism spectrum disorder: a cross-sectional study in Western Australia. Int J Pharm Pract. 2019;28(10).

11. Arnold SRC, Bruce G, Weise J, et al. Barriers to healthcare for Australian autistic adults. Autism. 2024;28(2):301–315.

12. Lim R, Moffat AK, Young R, et al. Use of medicines in adults with autism spectrum disorder in Australia. J Pharm Pract Res. 2021;51(5):410–414. Available from: https://onlinelibrary.wiley.com/doi/full/10.1002/jppr.1745

13. Turner M. The role of drugs in the treatment of autism. Aust Prescr. 2020;43:185–190. Available from: australianprescriber.tg.org.au/articles/the-role-of-drugs-in-the-treatment-of-autism.html