Written by the Reframing Autism Intersectional Advisory Committee
Autism diagnosis is often viewed as a privilege due to the various barriers individuals face in obtaining a formal diagnosis. Time is a significant factor, with many experiencing lengthy delays and exhaustive processes in accessing assessments. The process can also be financially burdensome, as there is currently no specific funding support for Autism diagnosis in Australia. Many advocates argue that Medicare funding should be provided to make diagnosis more accessible to all who need it, as requiring a diagnosis for support services exacerbates existing inequalities.
Despite these calls for reform, diagnostic inequities persist, especially based on race, ethnicity, culture, gender, wealth and socioeconomic status. The impact on health and wellbeing of undiagnosed Autistics is profound and lifelong, and underscores the need for improving diagnostic equality and ensuring that everyone – regardless of gender, culture, economic means or intersectionality – has access to timely and accurate diagnoses.
Females and gender-diverse individuals often face distinct challenges in accessing an Autism diagnosis due to gender-specific barriers. Autistic girls can appear shy or become skilled at mimicking social behaviors, which can mask their difficulties. This makes it harder for doctors to recognise their traits and can delay parents from seeking support. Additionally, some girls only exhibit pronounced Autistic traits later in life, particularly during adolescence when social demands increase, further delaying timely diagnosis.
Furthermore, women tend to have a harder time during the diagnostic process compared to men because the behaviours used to diagnose autism are based on how autistic traits present in males, more specifically, white male Autistic children upon which diagnostic criteria were established and are still based. As a result, women, gender diverse, and culturally diverse adults who show significant Autistic traits might not fit these limited criteria, leading to either a delayed diagnosis or a misdiagnosis. This bias stems in part from the historical view of autism as a predominantly male condition.
The risk of misdiagnosis is particularly high for girls and gender-diverse individuals whose Autistic traits overlap with mental health issues. Conditions like anxiety, mood disorders, or eating disorders frequently co-occur, making it difficult to distinguish Autistic characteristics. This complexity often leads to confusion and delays in getting an accurate diagnosis.
Different cultures may see behaviours differently, affecting how Autism is diagnosed in adults across different communities.
Culturally and linguistically diverse (CALD) families also face disproportionate challenges in accessing accurate diagnoses due to race, language and cultural differences that are unaccommodated. These barriers are rooted in historical, ideological, economic, and political biases, as well as the oppressive treatment of disabled individuals from Black and Brown communities.
Many Autistic Aboriginal and Torres Strait Islander (ATSI) individuals encounter inaccessible healthcare services and education, which hinders getting accurate information and support. They can face long waiting lists, expensive services, complex administrative procedures and have trouble securing financial help. Government rules can be inflexible, making it hard to obtain necessary care, whilst impacting the work and health of carers. These barriers create significant obstacles for Indigenous families trying to support their Autistic children. Indigenous children are diagnosed less often than non-Indigenous children due, in part, to these barriers, and to the greater acceptance of differences that exists within some Indigenous communities.
Another major challenge ATSI families face is racism and disrespect from some service providers, who may not take the time to understand their cultural backgrounds or listen to their concerns during consultations. Families from CALD communities, in particular, report that doctors often disregard their input or fail to appreciate their values, perpetuating experiences of marginalisation and discrimination. This systemic bias can lead to ongoing mistrust in healthcare services.
Furthermore, healthcare providers may not recognise Autistic characteristics in children of colour and may have biases that influence how they communicate and gather information. Children of colour, including Black and Latinx children, are more likely to be diagnosed with conditions like ADHD or conduct disorder before getting an autism diagnosis.
These challenges highlight the need for more culturally sensitive and accessible diagnostic processes for CALD families.
Seeking an autism diagnosis at different life stages also comes with its unique set of challenges. Not all adults have access to professionals who are well-versed in diagnosing autism. For many adults, especially those with difficulty understanding or expressing their emotions, describing their Autistic experience can be difficult. This can make it challenging to communicate their traits and symptoms effectively to healthcare providers.
Many doctors and healthcare professionals have limited knowledge of autism in adults, which can result in missed or incorrect diagnoses. Moreover, healthcare providers often need childhood information to diagnose autism, yet not everyone has someone in their life who can accurately provide this history. Women seeking late diagnosis, in particular, often worry that doctors may not believe them or fully understand their unique Autistic characteristics, which can lead to hesitation or further delay in seeking a diagnosis.
Additionally, the diagnostic tools used for identifying Autism in adults may not be sufficiently sensitive, particularly for women or individuals who have learned to mask or hide their Autistic traits. As a result, many adults face significant challenges in receiving an accurate and timely diagnosis.
The privilege of diagnosis extends beyond adults; children also experience delays, misdiagnoses, or lack of diagnosis altogether.
Autistic individuals with overlapping mental health presentations, such as anxiety, depression, and/or eating disorders, often face additional barriers in getting their Autistic identity formally recognised. Clinicians may focus on these co-occurring conditions without recognising the Autistic traits that co-exist. This intersectionality can delay proper diagnosis and treatment, further complicating the lives of those seeking answers.
It’s crucial for clinicians to consider autism alongside co-occurring mental health conditions to ensure accurate and comprehensive evaluations.
Recognising autism as a diverse and intersectional experience is essential for improving diagnostic equity and ensuring that everyone, regardless of background or identity, has equal access to timely and accurate diagnoses.
Current diagnostic criteria require significant impairments, implying that thriving Autistic individuals do not exist. Even after a diagnosis, support often remains focused on the diagnosis rather than the person, reflecting the ongoing influence of clinical labels on research and services.
Requiring a diagnosis for support services can worsen existing inequalities, and the diagnostic process itself can be long and exhausting.
Getting an autism diagnosis can be a challenging experience, even when the process is handled well. Unfortunately, many individuals report negative first responses to their diagnosis, which can contribute to a sense of great distress or trauma surrounding the experience. Therefore, we want to emphasise the importance of making the diagnosis process as empowering and affirming as possible for individuals.
Clinicians involved in an autism diagnosis face several challenges. One is the lack of lived experience or affirming attitudes among some assessors and diagnosticians. This can lead to a disconnect between the professional’s perspective and the lived realities of Autistic individuals. Additionally, ingrained biases, assumptions, and misconceptions about Autism contribute to diagnostic difficulties. There’s often a tendency to focus on a narrow profile of Autism, overlooking the diverse ways in which Autism can manifest in individuals.
Accountability is another concern, with calls for addressing non-helpful clinicians who may not adequately support Autistic individuals during the diagnostic process. Misdiagnoses are also prevalent, with some Autistic individuals being told they’re not Autistic while others receive an incorrect diagnosis. The diagnostic process itself may not fully capture all aspects of an individual’s experience, leading to incomplete assessments. A lack of support and skills of clinicians can prevent Autistic individuals accessing the healthcare services they need most. This lack of support can leave individuals feeling isolated and overwhelmed.
Healthcare services play a crucial role in how individuals access the support they need and cope with their diagnosis. Lack of understanding or support from healthcare service providers can further exacerbate the negative impacts of a badly handled diagnosis, adding to the emotional burden already experienced by individuals navigating their Autism journey.
Overall, addressing these issues requires a holistic approach that not only focuses on the diagnostic process itself but also considers the support structures and resources available to individuals before, during, and after receiving an autism diagnosis. Creating a more supportive and affirming environment can help to remove the negative impact of poorly handled diagnoses for Autistic people, their families and carers.
At present, autism diagnostic access and accuracy remains skewed in favour of more privileged groups. Recognising autism as a diverse and intersectional experience is essential for improving diagnostic equity and ensuring that everyone, regardless of background or identity, has equal access to timely and accurate diagnoses.
Reframing Autism’s Intersectional Advisory Committee consists of a diverse group of people who represent some of the most marginalised communities within the Autistic population. Its members have lived experiences of complex communication needs, LGBTQIA+, CALD contexts, adoption, financial disadvantage, co-occurring psychosocial and physical disabilities, among others. IAC members have worked in ways that are accessible to them to produce resources for Reframing Autism, including the much-acclaimed Welcome Pack, and the position statement on diagnosis. We are indebted to their invaluable contribution to Reframing Autism’s work.
The Reframing Autism team would like to acknowledge the Traditional Owners of the lands on which we have the privilege to learn, work, and grow. Whilst we gather on many different parts of this Country, the RA team walk on the land of the Amangu, Awabakal, Bindjareb, Birpai, Whadjak, Wiradjuri and Yugambeh peoples.
We are committed to honouring the rich culture of the Aboriginal and Torres Strait Islander peoples of this Country, and the diversity and learning opportunities with which they provide us. We extend our gratitude and respect to all Aboriginal and Torres Strait Islander peoples, and to all Elders past and present, for their wisdom, their resilience, and for helping this Country to heal.
Donate
