Hello to all supporters,
Please see below the letter that I have written to send to Parliament. Thank you for all your support so far.
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The Hon. Anthony Albanese,
My name is Emily Andrews, and I am a 29-year-old healthcare worker residing in New South Wales. I am writing to you to address an urgent and growing issue: the need for more affordable ADHD and Autism assessments in our state. Although this concern is prevalent across Australia, I am beginning with NSW, with plans to extend this advocacy to other state leaders as well.
As someone who has personally experienced the challenges of both ADHD and Autism, I want to share my story. I was diagnosed with ADHD at the age of 5, which marked the beginning of a turbulent journey. Despite early intervention with medication, I faced significant struggles throughout my schooling, particularly with maintaining focus and completing tasks. At 14, I entered the workforce but found it difficult to stay in one job, frequently moving between retail and nanny roles. My life took a turn when I enrolled in TAFE to study Nursing at 19, and I quickly discovered a passion for the profession. I worked as an Assistant in Nursing across a variety of specialties, including Aged Care, Maternity, Birthing, Mental Health, Emergency, Paediatrics, Renal, Neurology, Home Care, and COVID Vaccination, testing, and accommodation.
At 25, I was diagnosed with Autism—a revelation that was both surprising and challenging, especially as I was deeply involved in nursing and two years into an undergraduate Bachelor of Nursing course at university. Although I had always been aware of my unique struggles, receiving this new diagnosis in adulthood added a significant layer of complexity to my life. My challenges at work intensified during the COVID-19 pandemic, leading to extreme panic attacks, multiple hospitalizations, and ultimately, the difficult decision to drop out of university. The pressures of working with peers, completing tasks, and avoiding burnout became overwhelming. After experiencing physical attacks from patients in Aged Care, Neurology, and Emergency, I made the heartbreaking choice to step back from nursing to mentally regroup. However, this decision ultimately led me to a role in the Mental Health Virtual Care Centre within the South Eastern Sydney Local Health District, where I have been able to continue contributing to the healthcare field in a meaningful way.
Over the past year, my work in the mental health space has fuelled my desire to advocate for neurodivergent individuals like myself. I founded an online advocacy group called Our Beautiful Brains, and I have been actively working towards delivering presentations at schools, universities, and workplaces to raise awareness about mental health and neurodivergent conditions.
Throughout my personal and professional journey, I have identified two critical issues: the lack of knowledge about mental health and neurodivergent conditions, and the prohibitive cost of ADHD and Autism assessments in our country. These assessments can cost thousands of dollars, creating a significant barrier to access for many individuals. Without affordable diagnostic services, countless people are left undiagnosed and unsupported, leading to a range of negative outcomes across various aspects of life.
To provide context, here are some key statistics regarding ADHD and Autism in Australia:
An estimated 1 in 20 Australians have ADHD, with more than 75% of children continuing to experience symptoms into adulthood (Healthdirect Australia).
1 in 3 people with ADHD have co-occurring conditions such as anxiety, depression, learning difficulties, or Autism.
ADHD prevalence is notably higher among individuals in the correctional system—5 times higher among youth prisoners and 10 times higher among adult prisoners (Australian ADHD Professionals Association, 2024).
At least 1 in 40 Australians are Autistic, equating to approximately 675,000 people (Autism Spectrum Australia).
25% of individuals in the judicial system have ADHD (ABC News, May 24, 2023).
In 2022, 414,000 Australians were prescribed ADHD medication, with this number more than doubling in the past five years (ABC News, November 18, 2023).
A national survey revealed that 83% of people felt stigmatized due to their condition (ABC News, October 23, 2023).
In June 2023, ADHD Australia conducted a survey that identified the cost of diagnosis as the primary concern among respondents. One of the key recommendations from this survey was to make funding available for ADHD assessments through mechanisms such as Medicare rebates, subsidies, bulk billing, and controlled costs (ADHD Australia, 2023).
It is imperative that we address the accessibility of ADHD and Autism diagnoses. These conditions do not merely affect attention and focus; they have profound impacts on every facet of a person's life, from sleep and nutrition to social relationships, work performance, and emotional regulation. For instance:
Sleep:
Poor or interrupted sleep
Inability to "fall" asleep, leading to insomnia
Development of other sleep disorders
Nutrition:
Forgetting to eat, which can lead to binge eating
Difficulty making nutritious or healthy choices when eating
Sensitivity to certain food textures
Poor interoception, resulting in an inability to perceive hunger
Social Relationships:
Inability to maintain friendships
Conflicts within social circles
Experiencing rejection-sensitive dysphoria
Forgetfulness surrounding social plans and events
Impulsive speech that can often offend others
Family Relationships:
ADHD places greater demands on parental time and attention
Higher rates of conflict with siblings
Disrupted parent-child relationships
Higher rates of divorce and depression in parents of a child with ADHD compared to other families
Ability to Work Effectively:
Constant distractions
Trouble prioritizing tasks
Frequent mistakes
Ability to Hold Down a Job:
Constant conflict with coworkers
Burnout leading to excessive use of sick or annual leave
Misunderstanding of delegated tasks
Missing set deadlines
Poor punctuality due to time blindness
Running a Household:
Difficulty staying motivated to clean up after oneself
Low motivation to complete tasks like washing, cooking, and general cleaning
Finances:
Poor understanding of money
Forgetting to pay bills, incurring late fees and extra charges
Impulsivity leading to debt or poor purchasing choices
Poor organization of finances
Trouble organizing financial paperwork such as bills and tax statements
Choosing short-term rewards over long-term benefits like saving money
Study:
Struggles to finish assessments and assignments
Missed deadlines
Difficulty focusing in exams or study sessions
Potential additional learning difficulties such as dyslexia or dyscalculia
Emotional Regulation:
Prone to emotional outbursts
Difficulty calming oneself in stressful or emotional situations
Quick irritation
Tendency to become overexcited
People with an Autism diagnosis also experience a range of impacts, with varying intensity depending on the level of Autism. They may struggle with managing basic daily activities, such as showering, dental hygiene, getting dressed, preparing meals, and commuting to work (The Spectrum, n.d.). Additionally, individuals with Autism often face persistent challenges in social interactions and communication, exhibit rigid or repetitive behaviours, and encounter difficulties in securing and maintaining employment or educational opportunities. They may also experience coexisting mental disorders, learning difficulties, and struggle with changes in routine or personal circumstances (National Center for Biotechnology Information, 2019). Similar to ADHD, people with Autism may have previous contact with the criminal justice system, either as victims or offenders, and it is crucial that their needs are acknowledged and addressed (National Center for Biotechnology Information, 2019).
In Australia, the cost of an ADHD assessment can range from $700 to $3,000, while an Autism diagnosis can reach up to $2,800 (ADHD Therapy, n.d.; New Vision Psychology, n.d.). The Medicare rebate, available only once in a lifetime, provides a maximum repayment of $259.40 (Department of Health, n.d.). This financial burden is overwhelming for those living on the poverty line and even for middle-class wage earners. The lack of a formal diagnosis severely impacts lives, as Neurodivergent individuals cannot access support from the NDIS, obtain prescriptions for appropriate medications, and are more likely to experience higher rates low self-esteem, depression, and anxiety.
One thought stuck with me after conducting so much research on this matter…I wonder how many individuals in our prison system might have been helped if their ADHD/Autism had been identified and managed before they turned to criminal behaviour.
Access to an ADHD diagnosis is essential for improving the lives of those affected, enabling them to understand and manage their symptoms effectively. It fosters better academic, professional, and personal outcomes, while reducing the stigma and misunderstanding surrounding the condition. Early and accurate diagnosis can prevent negative consequences such as mental health crises, legal troubles, and financial instability, ultimately contributing to a healthier, more inclusive society. Ensuring that everyone has access to an ADHD diagnosis is not just a personal issue—it's a vital public health concern.
In conclusion, the barriers to accessing affordable ADHD and Autism assessments have profound implications for individuals and society alike. The current costs not only prevent timely diagnoses but also contribute to a cascade of negative outcomes, including unmanaged mental health issues, legal troubles, and financial instability. Comparatively, other jurisdictions have successfully implemented measures to improve access to such essential diagnostic services. By adopting similar approaches, such as increased funding through Medicare rebates or subsidies, NSW can lead the way in ensuring equitable access to diagnoses for all.
Addressing this issue is not just about individual welfare; it's about fostering a more inclusive and supportive society. Timely and affordable access to assessments enables individuals to understand and manage their conditions effectively, reducing stigma and promoting better academic, professional, and personal outcomes. The ripple effect of improving access can enhance overall public health, reduce societal costs associated with untreated conditions, and contribute to a more equitable and compassionate community.
I urge you to consider these factors and support initiatives to make ADHD and Autism assessments more affordable and accessible in New South Wales. Your leadership in this matter could significantly improve the lives of countless individuals and set a precedent for other states to follow.
Thank you for your time and consideration of this critical issue.
Sincerely,
Emily Andrews
Healthcare Worker, Advocate for Neurodivergent Individuals
New South Wales