Chapter 3Barriers to assessment and diagnosis
3.1Throughout this inquiry the committee has heard how peoples' 'experiences of accessing an attention deficit hyperactivity disorder (ADHD) medical diagnosis are generally long, difficult, expensive and time consuming, causing significant stress, anxiety and pressure on family relationships and school systems'.
3.2In contrast, one of the submitters to the inquiry explained the life-changing benefits of early ADHD assessment and diagnosis, saying:
… if children can be diagnosed early and treated, they are much better able to adapt and learn strategies to manage and work with their condition, and treatments have greater impact while the mind is more malleable. Treatment from a young age is irreplaceable, and will yield ongoing benefits for the rest of their life.
3.3This chapter primarily considers the challenges of obtaining an ADHD assessment and medical diagnosis, including the quality of a diagnosis, diagnoses for diverse communities, and alternative models of care.
3.4While this chapter has considered a range of barriers to assessment and diagnosis for people who have ADHD, the committee repeatedly heard that a formal diagnosis does not guarantee people will receive the support they need. Forexample, members of the Australian Psychological Society reported that:
… there is a large gap in continuation of services for clients when a diagnosis of ADHD is provided, and that there is often a lack of smooth transition between assessment, potential referral to other professionals for treatment (i.e., a psychiatrist or paediatrician), and ongoing support through psychological intervention. Indeed, APS members expressed concern that once a diagnosis is provided clients often choose not to return for ongoing support services, despite this being a key recommendation for treatment.
3.5The widespread presence of these access barriers is emphasised by the small number of respondents to the inquiry who shared positive experiences of ADHD assessment and diagnosis. Many attributed their experience to luck or to individual support people who helped them to access services, 'such as an "amazing" doctor or psychiatrist, or a "fantastic social worker"'. As one person explained:
Thanks to an understanding GP [general practitioner] who said: 'let's look into it' instead of 'oh, everyone thinks they have ADHD now' (like my psychologist did) I was able to finally understand myself. After lost jobs, years of incorrect medications, a stay at a mental health hospital and so many changed jobs I could finally understand myself.
3.6Mrs Mel Lawrence from Disability Advocacy New South Wales (NSW) explained the life-changing personal impacts of an appropriate diagnosis:
Getting a diagnosis, medication and suitable supports will help me to achieve further success and reduce the constant shame and guilt I feel for not being or doing enough. I can see the value I have. I have so much of myself to give to helping others and achieving my goals instead of just doing my best to get by in life as nothing significant.
Avoiding a formal diagnosis
3.7The committee heard that in some instances, people who suspect they have ADHD avoid seeking a formal assessment and diagnosis because of the availability and cost of services, as well as other barriers outlined in this chapter.
3.8The committee heard a variety of reasons why people may avoid pursuing a formal diagnosis, including:
misperceptions of ADHD;
being dismissed by healthcare workers or families; and/or
perceived stigma about an ADHD diagnosis.
3.9People with undiagnosed and untreated ADHD often miss 'opportunities for early intervention and support', which can result in significant lifelong functional impairment, as well as 'significant costs to the individual, their family and, more broadly, to society'.
3.10Edward, a witness with lived experience of ADHD, explained that 'diagnosis for this condition occurs through people finally breaking after decades of not responding to the wrong treatment, at the expense of their lives and the lives of people around them'.
Difficulties in accessing assessment and diagnosis services
3.11Overwhelmingly, the committee heard that Australians have difficulty accessing ADHD assessment and diagnosis services. In 2020, an ADHD Australia survey found that nearly one in three people confirmed that getting a diagnosis was difficult. This result was loudly reaffirmed by a 2023 survey in which the majority of the 664 respondents said that:
… an ADHD diagnosis was long, difficult, inaccessible, expensive and time‑consuming for people living with ADHD. Many people explained how the ADHD assessment and diagnosis process negatively impacted their mental health and well-being, describing it as 'traumatic', 'terrible', 'horrific', 'shockingly bad', 'disgraceful' and 'a nightmare'.
3.12The committee heard that delays or decisions not to pursue diagnosis was 'incompatible with evidence supporting the need for early intervention' and delays and difficulties were causing 'significant distress', coexisting conditions, mental health issues, and lifelong negative impacts which were explored further in Chapter 2.
3.13The committee was also told that Australia has some catching up to do—with the Australian College of Mental Health Nurses saying we are 'far behind the rest of the developed countries with assessment, diagnosis and treatment of attention deficit hyperactivity disorder therefore limiting access to funding and programs to provide supports'.
3.14The Canberra and Queanbeyan ADHD Support Group went further, contending that 'access to timely assessment, diagnosis, interventions and management of a significant condition such as ADHD should be a fundamental right for all Australians in a first world wealthy country like Australia'.
Access to public services
3.15Most public sector mental health services do not provide ADHD services to adults, in effect pushing people to private sector care and support. TheCanberra and Queanbeyan ADHD Support Group noted in any case that the public health system is 'overwhelmed'.
3.16headspace National also noted there was limited public services available to young people, with 'no guarantee a young person will be seen for an assessment, even with a referral'. Dr Michele Toner from ADHD WA similarly observed that children and young people have difficulty obtaining help in the public system because it is so overstretched.
3.17Dr Andrew Leech from Royal Australian College of General Practitioners (RACGP) WA ADHD Working Group explained the impact on families trying to access paediatric services:
… we've basically got to the point where there is no access. We've got no capacity. I've got most of the patients I've referred returning quite frustrated, emotional and overwhelmed by the response that they're getting from the referrals that I've sent-very good referrals. They've explained to me that the phones just ring out when they call up to try and make a booking, or they're told to send an email and they'll be put onto a waitlist.
3.18In other instances, the committee was told that some public community mental health services and psychiatrists are reluctant to, or do not currently, diagnose ADHD or prescribe stimulants for ADHD, 'despite being qualified to do so'. Itwas suggested this may stem from a mistaken belief that treatment of ADHD is not within the remit of community mental health services and/or that perceived drug‑seeking behaviours or the coexistence of other conditions would complicate treatment.
3.19 The ADHD Foundation called on the Australian Government to:
… recognise ADHD as a primary mental health condition because currently ADHD for adults is not recognised or treated in the public health system. Consequently, psychiatrists are unable to treat ADHD. This forces adults to seek treatment in private facilities, where they are often subject to non‑regulated fees and long wait times. Policy change is required to enable psychiatrists working in the public mental health system to diagnose and treat ADHD.
3.20A range of other witnesses also called for improved access to ADHD services through the public system, including for children.
Long wait times
3.21A large number of submitters to the inquiry explained that low availability of specialist healthcare professionals—and publicly funded psychiatrists and paediatricians in particular—has meant that they and their families had to wait for long periods to access ADHD assessment and diagnosis services. It may also take several appointments before a diagnosis can be confirmed.
3.22Ms Dympna Brbich from the ADHD Foundation told the committee 'we have to work with these families that are in distress. They've tried 20 or 30 psychiatrists. Nobody will help them'. At the inquiry's Melbourne hearing, Maddi told the committee about their distress trying to access services:
I was just knocked back constantly, constantly, constantly. So as someone with rejection sensitivity dysphoria, it's really hard and really triggering to do. Like it wasn't just they was saying, you can't have an appointment now. They wouldn't even put me on a wait list. They just had no availability whatsoever. Just no, no, no, no, no.
3.23Submitters, including the Australian Association of Psychologists Inc. (AAPi), advised that the numbers of mental health professionals have not kept up with the demand for services. WA Health highlighted that demands for paediatric services in the public system have increased dramatically—123percent over 10years—with around 64percent of the caseload including 'children with attention, regulation and concentration concerns or an ADHD diagnosis'. Demand has also increased for children with specific attention related concerns, rising from 11percent of referrals three to five years ago, to 21per cent of referrals in 2021.
3.24The committee heard that wait times are 'significant'—typically between six and 18 months for an initial appointment—and that a number of specialists are closed for new referrals, forcing some people to be turned away.
3.25The committee was advised of the wait times in specific jurisdictions:
The Institute for Urban Indigenous Health told the committee that wait times for children in south-east Queensland can range between four to twelve months, or up to two years in the public system.
In central and eastern Sydney wait times of 'up to 12 months for public or low‑cost assessments by paediatric, psychiatry, or psychological services are common'.
In WA, WA Health reported that public sector wait times for children are around 24 to 29 months, with a 12 month wait in the private sector.
3.26In reality, it was made clear during this inquiry that it takes some people years, if not decades, to access an assessment and diagnosis of ADHD.
High costs
3.27Almost all adult assessment and diagnosis of ADHD is done through the private sector. Private health specialist costs can be high, with significant out-of-pocket costs and very limited financial support. The committee heard of a $500 charge for an ADHD assessment then referred to a GP for management, another patient paying over $700 for a diagnosis, and up to $950 for a psychiatrist consult. The ADHD Foundation advised it was aware of some professionals charging up to $5000 for assessments:
As we see in the private system, there are no regulations around costings at the moment. As a consequence, the private operators are charging whatever they feel they can get away with, which is unacceptable.
3.28ADHD WA advised that costs are high for families, where multiple family members may have ADHD:
We're looking at families that are looking beyond $20,000 … they're having to make decisions on which member of the family will have the treatment. We have stories of parents, when they've been able to access the medication, having to share the medication, which obviously is not best practice, between the family members.
3.29For ADHD in children, NursePrac Australia advised that 'access to supports after assessment are virtually non-existent unless families can afford private services. Even then, few services offer ADHD-specific support'. In one instance a headspace client said:
I was very surprised that neither Medicare nor our Private Health insurance covered any part of the assessment costs. I think the costs necessarily limits access for individuals and families. I was informed that my son could go on a waitlist at one of the universities to get the assessment done cheaper, but there would be a considerable time delay. We chose the private option.
3.30ADHD Australia indicated these costs are prohibitively high for some people—especially young people—preventing them seeking assessment and diagnosis. For others these 'very expensive' costs often result in thousands of dollars of out‑of‑pocket expenses. The ADHD Foundation also advised that 'certain providers require payment in advance and holding deposits for future appointments'—putting services further out of reach for some patients.
3.31It was made clear to the committee that these high costs mean that people on lower incomes are unable to access diagnosis and care and as such are disproportionately affected by poor access to care. The Australian ADHD Professionals Association (AADPA) also noted that high costs are a significant barrier to care for some people with ADHD, 'who, because of their ADHD, are often less well off than many of their peers'. In some cases people are having to choose whether to wait longer for more affordable care, or in other cases no care at all, with 'serious social and economic implications'.
3.32Given ADHD's recognised heritability, the committee heard from the HealthCare Consumers' Association that some families were having to make difficult decisions about care in their household. Ms Jessica Lamb said families:
… are having to triage their children and say, "Who needs access to support first? Who is the most urgent? That is the child I can pay for now. The others have to wait". That is even though they know that everybody probably needs that support. It's a significant issue.
3.33Henry told the committee about his experiences with high-cost services:
… a friend told me about a psychiatrist who was meant to be excellent for ADHD. I phoned and made an appointment. They told me the initial consultation would be $830, and I hung up the phone at that point. I don't know who's worth $830 an hour. People make that in the world—I understand that—but my time isn't worth that. Their time isn't worth that, regardless of the amount of training they have.
3.34Another respondent to the ADHD Australia survey commented on high costs being a barrier to care:
It was tough. I went for years without seeing anyone mainly due to the exorbitant cost of seeing a psychiatrist AND the availability of a good one. The waiting lists are ridiculous. It was hard enough to get there in the first place let alone deal with all the roadblocks.
3.35It was suggested to the committee that this raises significant concerns about equity of access to healthcare in Australia.
Insufficient coverage under Medicare
3.36Evidence was received about the intersection of ADHD diagnoses with the Medicare system, with the committee being told that the 'absence of bulk-billed mental health services' and 'the current MBS [Medicare Benefits Schedule] rebate schedule is an impediment to comprehensive ADHD care in primary care'. Furthermore, headspace National and the RACGP advised that providing appropriate care is time consuming and not adequately funded.
3.37The RACGP explained that 'patient rebates are lower per minute for longer consultations, disadvantaging people who require more time with their GPs, including patients with ADHD'. The RACGP WA ADHD Working Group, compiled of collaborating practitioners from the RACGP WA, ADHD WA and the WA Primary Health Alliance agreed, stating:
ADHD medicine involves taking a careful history, getting collateral histories, screening for other commonly occurring conditions, mental state and physical examinations, psychoeducation and shared decision-making. All of these are vital but time-consuming. Spending longer in a GPconsultation is not economically viable for GPs.
3.38This is clearly demonstrated by 2022 research from the Grattan Institute, illustrated in Figure 3.1, which shows that visits for patients with chronic disease, social issues, mental health conditions and neurodevelopmental disabilities (such as ADHD) take longer, with GPs receiving less funding.
3.39The Grattan Institute further found that specialist fees, such as those charged by paediatricians and psychologists, 'are a major cause of high out-of-pocket payments'. It recommended that the government make this care more affordable, including by establishing co-located bulk-billing specialist clinics, making it easier for GPs to get advice about patients directly from specialists to:
reduce the number of specialist appointments;
reduce pharmaceutical costs by making changes to some prescriptions and PBS co-payments; and
by reducing out-of-pocket payments for allied health services.
Figure 3.1 The GP payment model promotes shorter consultations
Source: Peter Breadon, Danielle Romanes, Lachlan Fox, Jonathon Bolton and Lauren Richardson, Grattan Institute, A new Medicare: strengthening general practice, December 2022, p. 47.
3.40This view was shared by the AAPi, which explained that the current MBS rebate for ADHD assessment (up to three hours) is $90, whereas 'the recommended hourly rate is $300'. It recommended the rebate be increased to $150 'to allow for higher rates of bulk billing and increased affordability of sessions for assessment and treatment'. Ina 2022 survey conducted by the AAPi, over 80percent of psychologists responding said they would bulk bill more if the rebate was raised to $150.
3.41The Australian College of Mental Health Nurses also argued that MBS funding is too low. It advised the committee that 'due to inadequate funding and very low Medicare rebates', as well as short consultations under the MBS, services to the public are limited. Nurse practitioners have even lower levels of rebates—lower 'than any other health professional in primary care'.
3.42Advocacy groups and service-users likewise noted the inadequacy of Medicare subsidies, particularly for people with complex ADHD. Data compiled by headspace National shows substantial reductions in bulk billed services over time, with the proportion of young people receiving MBS services through headspace nearly halving over five years. It fell from 41 per cent in 2018 to 23percent in 2022. There were higher declines for new clients with falls from 31percent to 12per cent over the same period. Falls in the numbers of providers of MBS-funded services have been particularly high for psychologists.
3.43The Australian Psychological Society (APS) also recognised the limitations of Medicare funding for ADHD-related allied health services:
The APS notes that while ADHD interventions may be accessed and partly funded under the 10 sessions of psychological services available through the Medicare Benefits Schedule (MBS), the assessment of ADHD does not appear to be specifically recognised or funded through Medicare. This results in a significant gap and disconnect between assessment and intervention for ADHD within the MBS.
Inaccessible processes
3.44ADHD Australia also discussed the inaccessible processes associated with assessment and diagnosis, noting that processes are not 'ADHD friendly'. Evidence to the committee explained that processes can be frustrating and require a lot of mental energy, there are multiple forms to be completed, complex booking processes, fragmented care models and processes, and it can be difficult to find out essential information like how to access a streamlined assessment process. Forty per cent of the more than 570 respondents to a Yellow Ladybugs survey advised that 'the process of seeking an assessment was overwhelming for them'.
3.45Poorly designed processes, in addition to unclear referral pathways between GPs and specialists, place barriers and cause delays for people seeking ADHD assessment and diagnosis. Square Peg Round Whole wrote:
It is unclear and inconsistent exactly what is required for a diagnosis. Some people are made to jump through many hoops and others get a caring, experienced and sensible professional who listens to them and diagnoses without requiring the same number of expensive assessments.
3.46This was supported by the experiences of submitters, with one writing about their experiences with children post-diagnoses:
For children diagnosed with an ADHD assessment, there is also no roadmap on what to do next, apart from try to network to find the name of a Psychiatrist who is specialised in ADHD to prescribe medication.
3.47NursePrac Australia agreed that the system is complex for families to navigate, writing that families who experience challenges with personal agency, navigating unnecessarily complex systems and confident advocacy, 'struggle a great deal and need a lot of assistance and support'.
3.48The effects of these processes on people with ADHD are significant, with one person writing that:
… the amount of admin and having to remember to take the next step/do the next thing was completely prohibitive. Sometimes it felt like it was deliberately complicated to make it harder for people to get diagnosed.
3.49Another submitter to the inquiry also highlighted the challenges of convoluted processes for people with ADHD:
The specifics of interaction with government forms, applications, fees, and obligations feel almost like they are designed to home-in and press down on the very worst pain points that are inherent to the condition of ADHD. The people who design these systems surely cannot understand the concept of executive dysfunction.
Requirement for repeat diagnoses
3.50The committee heard of numerous instances in which clinicians would not accept an existing formal diagnosis of ADHD, and instead, forced people to undergo ADHD screening and assessment multiple times by a range of health professionals. Evidence showed this unnecessarily added to the wait times and costs of diagnosing ADHD. For example, Ms Jessica Lamb of the Health Care Consumers' Association pointed out:
Often we hear anecdotally that psychiatrists won't accept another psychiatrist's diagnosis. They will insist on stepping through those steps again. You pay for a new diagnosis with your new psychiatrist to access the medications that you were previously on in your previous jurisdiction.
3.51The committee also heard about the negative impacts this process can have on an individual's health, with one writing:
The doubling-up makes you feel as though the psychologist diagnosis must be wrong, which is confusing. The doubling-up of assessment and the explaining of everything, has a destabilizing effect on identity and the sense of self. It feels manipulative and reeks of coercion for their financial gain. But there is no other option, because psychiatrists are the gatekeepers to treatment, so you have to play the game.
Access in regional, rural and remote Australia
3.52The Royal Australasian College of Physicians (RACP) advised the committee that issues relating to long wait times and high financial costs are exacerbated in rural and regional areas, where it is even more difficult to access specialists. WA Health also outlined the structural barriers to ADHD diagnosis and treatment in these areas, advising these are:
… particularly apparent in rural and remote regions where no services exist for the diagnosis and treatment of ADHD. Distance to treatment providers, timings of appointments and cost of accessing services are widespread barriers with public services as well as a significant lack of private providers in rural and remote catchments.
3.53Submitters were of the view that there is a lack of trained psychiatrists and paediatricians able to diagnose ADHD in rural, regional and remote areas of Australia, with thin markets impacting the accessibility of services. TheAADPA also drew attention to the particular challenges accessing services for people in regional and rural areas, arguing 'the cost of ensuring equitable access to services must be balanced against the wider societal cost of not doing so'.
3.54Mr Paul Schwerdt from the Canberra and Queanbeyan ADHD Support Group was more emphatic, stating:
Access to assessment services and accurate assessment and diagnosis of ADHD is exceedingly poor to almost non-existent in regional, rural, remote and Indigenous communities in Australia. Current public and private mental health services and supports have not kept pace with demand for services related to ADHD and its comorbidities.
3.55It was observed that a lack of access to specialists has resulted in many patients needing to travel long distances—sometimes interstate—to see a specialist, at considerable cost.
Quality of diagnosis
Lack of recognition of symptoms
3.56It was explained that in some cases, individuals and their families, as well as their healthcare professionals, education providers and/or employers fail to recognise the signs of ADHD—from lack of awareness or because of the particular presentation of ADHD. This can prevent people from seeking an early assessment and diagnosis of ADHD, thus delaying treatment and support.
3.57Yellow Ladybugs noted that outdated attitudes about ADHD only occurring in children have created additional barriers for adults who suspect they have ADHD. It observed that 'many of these adults report being the same ADHD child but that due to a lack of understanding around ADHD at the time, ADHD was never discussed with them or their parents'.
3.58These observations were reflected in many of the experiences of people with ADHD who made a submission to the inquiry. As one submitter explained:
For me the greatest barrier to accessing a diagnosis was gaining the knowledge that I may indeed have ADHD in the first place. I did not have the opportunity to recognise my symptoms for myself.
Over the years I had seen numerous clinical psychologists to help me address various issues that I felt were holding me back … Yet not one psychologist identified that I might have ADHD, it was never mentioned, and so I received no help.
3.59The apparent lack of awareness of the heritability of ADHD also means that parents supporting a child or children with ADHD are not given sufficient support—the committee was told that this is particularly challenging where parents themselves may have a diagnosed or undiagnosed neurodivergence.
Misdiagnosis
3.60In other cases, the committee heard that people with ADHD are being misdiagnosed with other conditions. The committee heard that in some people, ADHD can present in ways that may overlap with a range of other disabilities like autism and fetal alcohol syndrome disorder, as well as trauma. Complexity and/or masking of ADHD symptoms could result in inaccurate assessment and diagnoses that deny people with ADHD the support they need and can cause harm, and difficulties having ADHD and mental health conditions recognised.
3.61The RACP noted that 'poor understanding of comorbidities and contributing factors can lead to poor quality assessment, relevant assessments not being undertaken, no assessment of learning ability, or alternative issues not considered in referrals'. Furthermore, these factors can result in higher caseloads for health professionals, and further delays in assessment and diagnosis.
3.62The committee was also told that gender bias in ADHD assessment, support and research has particularly impacted girls, women and gender-diverse people, resulting in under- and misdiagnosis of ADHD. Further, it was submitted that it is 'common for this cohort to initially experience misdiagnosis with other mental health conditions', as discussed further later in this chapter.
Professionalism and continuity of care
3.63The committee heard of instances where professional healthcare workers failed to meet expectations of professionalism in their diagnosis and care of people with ADHD. Submitters explained how the 'dismissive, ignorant and invalidating attitudes of many of the practitioners they have encountered'. Nat,for example, wrote:
I have been seen as lazy, disinterested, non-compliant, rude, a liar, and all sorts of disrespectful things because people don't understand what I'm going through, and that has messed up my self-esteem. It's not seen as a result of disability, it's seen as a personal fault of me as a human.
3.64The predominance of poor experiences with healthcare professionals reported by people seeking ADHD assessments, as well as other factors such as patient relocation, practice closure and retirement or death of a clinician—can compel them to seek support elsewhere, thus unnecessarily straining existing health professional workforce shortages and expanding long wait times. Thecommittee heard the impact of this is that people with ADHD cannot always secure continuity of their care, with significant personal impacts.
3.65Dr Nicole Higgins from the Royal Australasian College of Physicians emphasised the importance of continuity of care, telling the committee:
We know that we need to make sure that we have continuity of care and that we mustn't fragment care and have little bits of people and their diagnosis and their knowledge scattered around everywhere. It's really important that we pull those threads together. People have much better health outcomes if we have continuity of care.
The role of telehealth
3.66Access to telehealth services were shown to be helpful to a number of people with ADHD, with Mrs Mel Lawrence of Disability Advocacy NSW reflecting that:
… due to living in a regional areas, I'm not able to access a local psychiatrist, so my only option was to use telehealth, which came with a nine-month waiting period. I'm still in it at the moment.
3.67Some healthcare professionals expressed concern at the potential risks associated telehealth assessment and diagnosis. The Australian College of Mental Health Nurses warned that increasing ADHD awareness and demand for services has also driven up risks associated with 'inadequate assessment and misdiagnosis'. The college claimed that short consultations with inappropriately qualified staff who may not conduct a comprehensive assessment can lead to poorer outcomes for individuals. This view was reiterated by the AADPA, who advised that it 'does not support increased access that comes at a cost of reduced quality'.
3.68The Canberra and Queanbeyan ADHD Support Group likewise raised concerns about telehealth appointments and called for government regulation. Ithighlighted that:
… a number of clinics only offer telehealth appointments, with exceedingly high fees delivering a quick turnaround for patients seeking an ADHD diagnosis. There is no follow-up or support. This is clearly price gouging with an unacceptably high risk of misdiagnosis, most likely inappropriate consequent treatment and further harm causation.
Diagnosis for diverse communities
3.69While there are barriers to ADHD assessment and diagnosis across many sectors of the community, there are some specific groups within the community that face additional obstacles. Some of the specific issues faced by these cohorts are detailed in this section.
Women and girls
3.70The committee heard from numerous women with ADHD as well as healthcare professionals that women are 'being diagnosed late, ignored or experiencing gendered bias around whether they had ADHD'. The Institute for Urban Indigenous Health observed that in the United States it is predicted 'that ADHD in girls goes undiagnosed between 50 and 75 per cent of the time'.
3.71Ms Stephanie Dowden, Children's Nurse Practitioner with NursePrac Australia pointed to reasons as to why there may be underdiagnoses in girls, saying:
At the moment, you would think it's maybe 90 per cent boys who have ADHD and only 10 per cent girls. I suspect it's probably equal. But it presents differently. Children are socialised differently. Girls are less allowed to be naughty and act out, so it's not so obvious. They internalise more. Boys are allowed to act out, so it becomes very obvious.
3.72Submitters agreed, saying that the stigma arising from this gender bias often forces women and girls, in particular, to learn to adeptly mask and internalise their ADHD symptoms. They also agreed that women and girls are more likely to be socialised to behave in ways that are perceived as less needful of intervention. Responses from a survey conducted by Yellow Ladybugs indicated that 86 per cent of the more than 570 survey respondents tried to mask or hide their ADHD at school or work to fit in. As the committee heard, this response can result in burnout.
3.73Yellow Ladybugs relayed the personal experiences of one woman with ADHD:
As a high masking woman it has been extremely challenging to get support. It continues to be challenging because of the stigma and lack of awareness about ADHD and its many presentations. I may look fine, but I am not, and if I get to the point of asking for assistance it is because things are extremely dire. My story is not uncommon, unfortunately.
3.74Additionally, parents and teachers are less likely to recognise ADHD behaviours in girls and therefore are less likely to pursue diagnosis and treatment for ADHD. The Institute for Urban Indigenous Health stated that the current tools used to assess and diagnose ADHD 'do not account for masking strategies' and do not:
… provide guidance on variation in common symptoms based on sex. Whilst women and girls can have any of the common presentations, they are more likely to have the inattentive presentation.
3.75In addition to the inadequacy and gender bias of current assessment tools, it was argued that ADHD presentation in girls and women is poorly understood by some healthcare professionals. Yellow Ladybugs affirmed that 'the outdated stereotypes that inform this gender bias can be found in [the] screening process, access to referrals for diagnosis, the assessment process itself, and in accessing supports and services post diagnosis'. These factors combined have resulted in 'a backlog of adult women who were undiagnosed in childhood'.
3.76One of the submitters to the inquiry explained her late diagnosis, despite exhibiting symptoms in childhood:
ADHD was diagnosed only in hyperactive young boys when I was in school. ADHD was not diagnosed in young girls, who often present as inattentive and unable to focus. This led to me not being diagnosed, despite having difficulty focusing and applying myself to my work. It was never suspected because a dreamy student was not the picture of ADHD at the time.
3.77This has gendered impacts on Australian families of people with ADHD—and particularly impacts on women—in relation to employment, income, and overall health. One submitter wrote:
Misdiagnosis in women is a huge issue. My life has been a nightmare of poor mental health being diagnosed with bipolar and trying every single medication with no improvement … Women in their 30s and 40s have been through the wringer of misdiagnosis with bipolar, borderline etc. Do not let this keep happening to younger generations and seeing lives go to waste. Iattempted suicide many times because nothing worked and I believed my life would never get better.
Gender-diverse people
3.78Numerous submitters explained that similar gender bias has also led to significant challenges in gender-diverse people obtaining an accurate ADHD diagnosis, with misdiagnosis and late diagnosis common.
3.79The AAPi and Yellow Ladybugs, amongst other submitters, also noted that ADHD is not well understood in gender‑diverse people and that further research is required. This is discussed further in Chapter 8.
First Nations peoples
3.80The AADPA and Institute for Urban Indigenous Health advised the committee that ADHD in First Nations peoples (as well as culturally and linguistically diverse (CALD) communities) is also not well understood. Moreover, First Nations peoples are over‑represented among demographics known to have a higher prevalence of ADHD, 'including: children born pre-term, with a low birth weight, or with prenatal exposure to [substances] including alcohol, children in out of home care, people who are imprisoned or in the correction system and people … with neurodevelopment disorders'. The committee heard that other disabilities, neurodevelopmental and physical health conditions can also complicate diagnosis.
3.81The Institute for Urban Indigenous Health advised that the impacts of trauma alongside the abovementioned neurocognitive impairments can make ADHD diagnosis difficult. Based on its experiences, the institute advised that there 'may be there may be a higher prevalence of ADHD among Aboriginal and Torres Strait Islander peoples' and that 'ADHD may be under-recognised among Aboriginal and Torres Strait Islander adults'. The challenges appear to be compounded for First Nations women and girls.
3.82This observation is supported by the AADPA Australian evidence-based Clinical practice guideline for Attention Deficit Hyperactivity (ADHD) (Clinical practice guideline) which states that screening and assessment tools need 'careful consideration for First Nations people' given their validity 'is generally not well established in most Aboriginal and Torres Strait Island groups'. The Clinical practice guideline further acknowledged that adaption of existing tools likely to be insufficient.
3.83At the same time, the Institute for Urban Indigenous Health highlighted that it is concerned that First Nations peoples 'who attend mainstream GP appointments may be over-diagnosed' as a result of factors that may influence a diagnostician's beliefs about ADHD presentation—such as trauma, discrimination and chronic health conditions—'resulting in misdiagnosis and overdiagnosis and/or inappropriate medication interventions'.
3.84The National Aboriginal Community Controlled Health Organisation (NACCHO) told the committee that First Nations peoples are less likely to access services than other Australians due to 'limited availability of culturally safe services, marginalisation and lack of trust in government'. The RACP agreed, advising that 'many services lack cultural accessibility' and are 'not acceptable or appropriate for children and families who do not identify with the dominant culture'.
3.85Significantly, NACCHO and the Institute for Urban Indigenous Health reported that perceptions of disability are different amongst First Nations peoples. Theinstitute highlighted that:
… it is important to note diagnosis of ADHD is based on the perception of someone's behaviour, which is influenced by culture, important for our Aboriginal and Torres Strait Islander clients, who have a different perception of behaviour.
3.86NACCHO noted that 'disability is a socially constructed concept arising from western culture and society'. Further, that First Nations peoples often focus on holistic health and 'celebrate the strengths and differences of an individual rather than focussing on deficit' and that this can result in 'under-recognising and responding to specialist needs of people … particularly those with less visible disabilities such as ADHD'.
3.87The AADPA acknowledged that 'for Aboriginal and Torres Strait Islander peoples, mental health interconnects with numerous domains including spiritual, environment, country, community, cultural, political, social emotional and physical health' and that the provision of appropriate and competent care urgently requires further research.
3.88The committee heard about the importance of an intersectional approach to ADHD assessment and diagnosis for First Nations peoples, who experience disproportionate socio-economic disadvantage, lower life expectancy and systemic, structural racism and discrimination. In their submission, SquarePeg Round Whole elaborated on the experiences of First Nations families, including the impacts of intergenerational trauma, saying:
… it is clear that a service provider who is not well-trained and practiced in trauma-informed approaches could do a lot of damage. If you add socioeconomic disadvantage into the mix, for Indigenous and non‑Indigenous families, accessibility becomes very difficult indeed because of the costs associated with accessing timely diagnosis and ongoing support.
3.89The committee heard a first-hand account of how the health system does not meet the needs of First Nations peoples, with one mother sharing that:
… the experience of getting an ADHD diagnosis is bordering on abusive. There is no room for cultural safety in a system like that, which could be triggering for Indigenous people due to it feeling like institutional abuse.
Practitioners need to be aware of power imbalances that exist in their systems, that they benefit from, and start to validate the lived experience of Indigenous Australians, before cultural safety will be achieved. The guideline mentions vague cultural safety principles, but I have never witnessed this. I suspect that many people who identify as Aboriginal are largely living with undiagnosed ADHD due to lack of access, awareness and affordability. The unreached potential and intergenerational trauma of undiagnosed ADHD is devastating. More research is needed into the prevalence of ADHD in Indigenous communities. The benefits of treatment need to be promoted to Aboriginal communities to counteract stigma.
3.90The RACP recommended improved consultation with First Nations health groups, greater emphasis on culturally safe diagnosis and treatment, and capacity building in the Aboriginal Community Controlled Health Sector to improve outcomes for First Nations peoples.
Culturally and linguistically diverse communities
3.91Several witnesses highlighted that ADHD assessment and diagnosis for people in some CALD communities can be challenging, due to factors including cultural beliefs and attitudes towards mental health, neurodevelopmental conditions and disability.
3.92Additionally, people from CALD backgrounds may experience language barriers and lack appropriate access to translated information when seeking an ADHD assessment or diagnosis. Cultural gender roles may also influence an individual's propensity to recognise and/or seek support for ADHD. These factors, combined with high costs and a health system that is often inaccessible to diverse populations, significantly increase the barriers to appropriate diagnosis and support for people with ADHD in CALD communities, particularly those in regional areas.
3.93Submitters and witnesses suggested that more nuanced and specific tools and services are required for people with ADHD from CALD communities to take account of cultural and linguistic differences, as well as improved 'community education, awareness campaigns and advocacy services'.
Different views of diagnosis
3.94The committee received information from a small number of healthcare professionals that, in particular for children and adolescents whose brains are still developing, over‑medicalising and applying a label of ADHD to a range of symptoms and prescribing medication may be harmful.
3.95Dr Denborough explained to the committee:
I think labelling of challenging behaviour such as ADHD and treating with drugs seems to provide a relatively simple solution. But this is a very complex problem. In addition to long term work to address systemic issues like poverty, inequality and effects of social media, we believe that professionals need to work with children and their families to understand the reasons behind these problems and create solutions tailored to the individual situation.
3.96The Medical Consumers Association also warned of the over medicalisation of the mental health sector, and the need for society to allow for individual differences in attention.
3.97Dr Martin Whitely suggested that using funding to identify and tailor support, including behavioural support, to meet the diverse and complex needs of these children and their families would be more beneficial.
AADPA Clinical practice guideline
3.98The inquiry's terms of reference include consideration of 'the viability of recommendations from the Australian ADHD Professionals Association's Australian evidence-based clinical practice guideline for ADHD'.
3.99This section briefly discusses what the guideline is, and how it is intended to improve the care, and consistency of care and support of people with ADHD, by providing guidance and recommendations to clinicians and policy makers. This section also the levels of support for the guideline and the effectiveness of its implementation to date, as well as updates which could be made to improve care.
About the Clinical practice guideline
3.100The AADPA released its Clinical practice guideline in July 2022. The guideline 'aims to promote accurate and timely diagnosis, and provide guidance on optimal and consistent assessment and treatment of ADHD'.
3.101The guideline outlines a 'national standard for identification, diagnosis and treatment of people with ADHD', 'with a focus on everyday functioning and quality of life'. The recommendations for clinical care included in the guideline draw on best available evidence, multidisciplinary clinical expertise, extensive consultation, and the preferences of people with ADHD.
3.102While it is intended for clinicians and other people who are involved in the professional support of people with ADHD, the AADPA recognises that it will also be used by people with ADHD and their families and carers.
3.103The AADPA developed the Clinical practice guideline with $1.5 million grant funding from the Department of Health. The clinical care recommendations in the guideline were developed by the AADPA's multidisciplinary Guideline Development Group comprised of 'people with experience living with ADHD, caring for people with ADHD, and academics with experience in ADHD' across a range of disciplines including healthcare clinicians, clinical pharmacology, nursing, allied health and education. Members of the group also represented a range of backgrounds including people from rural areas, and diverse ethnicity, culture and gender, including the involvement of First Nations peoples. Formal processes were also put in place to manage conflicts of interest.
3.104The Guideline Development Group followed a structured process to identify existing national and international ADHD guidelines, identify clinical areas for inclusion, locate supporting evidence, and then draft the recommendations. Where insufficient evidence was located clinical consensus recommendations were drafted by an expert sub-group. The guideline was developed 'in accordance with NHMRC [National Health and Medical Research Council] standards for clinical practice guidelines'.
3.105The guideline was approved by the National Health and Medical Research Council as meeting the required standard for Clinical practice guidelines. Thisapproval remains valid for five years. Of the 132 recommendations, 21are for government and are under consideration at the time of writing.
3.106The guideline has been endorsed by the Australian Psychological Society, RACP, RACGP, Speech Pathology Australia, Occupational Therapy Australia, Australian Clinical Psychology Association, AAPi, ADHD WA, ADHD Foundation, the Royal Australian and New Zealand College of Psychiatrists, ADHD Australia, and the World Federation of ADHD.
3.107In 2023 the AADPA released the Australian evidence-based Clinical practice guideline for ADHD: consumer companion guide (consumer companion guide) to make information in the Clinical practice guideline more accessible for people with ADHD, their families and carers.
Support for the Clinical practice guideline
3.108There was broad, although not universal, support for the Clinical practice guideline, with the RACP viewing it 'as a positive and essential step to provide people with ADHD and their families best-practice diagnosis and evidence‑based treatments in Australia'. The AAPi also recognised the good standing of the Clinical practice guideline, advising that is 'in line with international standards and are tailored to the Australian population'. WAHealth likewise noted that the Clinical practice guideline 'remain[s] best practice nationally'.
3.109In relation to First Nations peoples, the NACCHO supported the recommendations of the Clinical practice guideline. At the same time, it advocated for the implementation of recommendations 'in keeping with the Priority Reforms of the National Agreement', cultural safety training for healthcare professionals, and adequate support and resourcing for First Nations community-controlled services.
3.110However, not all healthcare professionals supported the Clinical practice guideline. Dr Martin Whiteley, and the Critical Psychiatry Network Australasia, represented by Professor Jon Jureidini, submitted that the Clinical practice guideline has 'serious shortcomings' and was not sufficiently supported by evidence. Dr Whitely warned that 'only three of the 113 recommendations are based on evidence of an acceptable quality' (i.e. with moderately robust supporting evidence).
3.111Furthermore, the clinicians stated the guideline developers were not sufficiently independent, given their public links to the pharmaceutical industry. ProfessorJureidini also submitted that important, strong evidence was ignored in the preparation of the guideline, including:
… relative-age effect, whereby younger children in a classroom are more likely to be diagnosed with, and medicated for, ADHD than their older classmates; serious adverse effects, such as the increased risk of suicidality associated with atomoxetine; and the lack of long-term and substantial benefits from treatment.
3.112Dr Whitely recommended that the Clinical practice guideline be 'ignored' while the Critical Psychiatry Network Australasia recommended that the NHMRC withdraw approval for the guideline.
3.113Mr Paul Schwerdt from the Canberra and Queanbeyan ADHD Support Group also noted that professional concerns about the Clinical practice guideline had been raised:
We note that there has also been professional disputation during the development of the guidelines, but this has not been noted. Assessment and diagnosis of ADHD and its accuracy still relies on behavioural observation of a neurodevelopment or neurobiological issue. Some neuroscience appears to have not been entertained or excluded in the development of the guidelines.
Areas for Clinical practice guideline improvement
Role for other health professionals
3.114The Clinical practice guideline recommends thorough assessment by an appropriately trained medical professional, and deliberately does not designate which professional should be responsible for diagnosis. This was done purposefully in order to be inclusive of a range of professionals. The AADPA indicated:
… what we are trying to do with the guideline is to really put forward the best way to diagnose and treat ADHD in Australia. Therefore, we did not designate any particular discipline areas that should be responsible for that. In fact, we wanted to be inclusive, so we went to great strides to actually not designate the professional areas that should be involved in the diagnosis and treatment.
3.115Given that the Clinical practice guideline does not specifically mention MentalHealth Nurses and Practitioners, or Nurse Practitioners in the comprehensive care of individuals with ADHD, the Australian College of Mental Health Nurses and the Australian College of Nurse Practitioners felt that this was 'hindering the delivery of assessment and support for people living with ADHD' and resulting in delays and inadequate support and care. NursePrac Australia likewise noted that:
… no nursing peak bodies endorsed the guidelines, and it is unclear if feedback was sought from any, which is a significant oversight. The guidelines also demonstrated a limited understanding of the nursing role, with an assumption that only mental health nurses or mental health nurse practitioners would be involved.
3.116Ms Sonia Miller from the Australian College of Mental Health Nurses contested that because they are not adequately recognised in the Clinical practice guideline, nurse practitioners do not receive funding and are therefore disadvantaged:
I continuously get told, 'Nurse practitioners are not in the guidelines, so we can't give you funding' - despite my clinical practice allowing me to provide the clinical service. Therefore, it is disadvantaging people in the community that they can't access me, because a funding group says, 'I can't see that you are listed in the guidelines.' So, with all due respect to all the work that has been done - it is a very thorough guideline - we understand that you weren't aware of the mental health nurses group when the work started to develop the guidelines. You did let us know that it is another five years or so before it will be reviewed, but that is five years of impacting a large group of health professionals who are not able to access funding for our clients.
3.117The Australian College of Mental Health Nurses further explained how mental health nurse practitioners with appropriate training could help people with suspected ADHD obtain an assessment and diagnosis:
I don't think everyone with a mental health presentation or ADHD needs to see a psychiatrist—psychiatrists are really there to work at the pointy end of services—when there are options like a mental health nurse practitioner who can do the full assessment, recommend medications, or start medications, and can work together with the GP. And if it is out of my scope of practice or more complex, I can also do a referral to a psychiatrist.
3.118Occupational Therapy Australia also thought that the Clinical practice guideline could be expanded to further consider the role of occupational therapists in ADHD care.
Implementation of the Clinical practice guideline
3.119The committee heard that the Clinical practice guideline is really a 'first step' to improving and getting consistency in ADHD diagnosis and support. Adissemination and implementation plan exists, however the AADPA advised that 'what we lack is funding for the large-scale implementation that is required', to ensure that integrated care models are developed and put in place.
3.120Multiple submitters called for faster and more active implementation and promotion of the Clinical practice guideline in order to improve outcomes for people with ADHD. WA Health called for more information on how the Australian Government will support the Clinical practice guideline's implementation, while the RACP recommended the development of a fully funded strategy to ensure that the Clinical practice guideline is implemented and that all Australians can access appropriate diagnostic and other services.
3.121Orygen also called for investment in the implementation of the Clinical practice guideline, writing:
The Guidelines now need to be actioned. Coordinated action that integrates schools, primary care and specialist care across public and private services is needed. A Federally funded implementation project is required to provide leadership and support the balanced roll-out of workforce training and service integration. An evaluation project is the third stage of implementation and would enable evidence from implementation to inform an improved, ongoing service model.
3.122The RACP observed that lack of resources has meant that the Clinical practice guideline has not yet been fully implemented, noting 'many medical specialists are not aware of the guideline'. The ADHD Foundation likewise observed that 'the lack of awareness of a definitive set of diagnostic procedures, has led to widely different practices which are confusing to service-users and has led to excessive costs'.
3.123The Institute for Urban Indigenous Health called for more active promotion and uptake of the Clinical practice guideline, as well as the uptake of specific recommendations on First Nations peoples, supported by appropriate training.