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Key points
- Autistic people are facing a mental health crisis.
- Traditional ways of working with autistic people are often not working, potentially exacerbating the issue.
- The medical model has viewed autism like a disorder that needs to be cured, when autism is not curable.
There is a mental health crisis among autistic people. A meta-analysis reviewing close to 100 studies revealed that most psychiatric conditions are significantly more prevalent in autistic individuals (Lai et al., 2019). Traditionally, the medical model has pathologised autism as a disorder needing a cure. In contrast, the neurodiversity-affirming movement, underpinned by the social model of disability, challenges this viewpoint by viewing autism as a natural variation of the human brain. This post aims to demonstrate why shifting our approach to autism toward a neurodiversity-affirming perspective is vital in addressing the mental health crisis autistic people face.
The mental health crisis among autistic individuals is marked by significantly higher rates of psychiatric conditions compared to the general population. Research indicates a stark prevalence of anxiety, depression, and suicidal ideation among autistic people. Autistic individuals are nine times more likely to experience suicidal ideation (Cassidy et al., 2014), and the mortality rate is 2.56 times higher across all causes of death for autistic individuals (Hirvikoski et al., 2016). Contributing to this crisis are systemic barriers to health care access, including diagnosis challenges and a lack of inclusive, adaptable services that meet the unique needs of autistic individuals, particularly for those with co-morbid diagnoses or from culturally diverse backgrounds (Malik-Soni et al., 2022). These barriers exacerbate the risk of psychiatric illnesses and compound the mental health crisis for autistic people.
Medical Model Versus Neurodiversity-Affirming Practice
Within the medical model framework, the approach to treatment for autistic individuals has focused on reducing symptom severity. However, research has highlighted that depression symptom severity, not the severity of autistic traits, was the most reliable predictor of quality of life for autistic people (Oakley et al., 2021). Therefore, if we are to tackle the mental health crisis faced by autistic people, it is imperative to consider a shift in the framework for working with autistic people. We must move away from focusing on reducing "symptoms" of autism to understanding what it means to live meaningfully for autistic people.
Neurodiversity-affirming practice, at its essence, is about person-centred and strengths-based care. The neurodiversity movement emerged in the late 1990s, primarily within online autistic communities, and represents a paradigm shift in understanding neurological differences. The neurodiversity movement views autism as a natural variation of the human brain, not a disorder requiring a cure. This perspective challenges the traditional medical model of disability and advocates instead for a focus on creating supportive, accommodating environments for autistic people.
It is crucial to acknowledge that the neurodiversity-affirming movement does not intend to diminish the challenges faced by autistic people or their necessity for services and support. It does not seek to negate the reality that autism is a disability, which is in itself a neutral term. The label "disorder" insinuates an inherent flaw or pathology, potentially leading to stigma and an emphasis on interventions that seek to "cure" or "treat" autism. Considering autism is a difference in neurological makeup and cannot be cured, one may argue what the value is in pathologising this form of diversity.
Autism, like other neurological differences, is still considered a disability because autistic people experience challenges in social communication and sensory processing (amongst other things) that make it difficult to navigate the world. However, by embracing a neurodiversity-affirming perspective, we can appreciate that the difficulties autistic people face are further compounded by the person/environment mismatch. Autistic people are living in a world not designed for them. We are shifting away from the medical model, which asks us, "How can we change the person to suit the environment?" and moving toward, "How can we change the environment to accommodate the person?" This perspective empowers autistic people to identify and cultivate their unique strengths, facilitating their feeling of inclusion and value within society.
The ethical principle of "do no harm" is foundational in psychology, and, therefore, providing neurodiversity-affirming care is arguably an ethical imperative. Given what the research has indicated about the mental health crisis faced by autistic people, it demands a shift in approach. The approach to care for autistic people has not been working in a way that contributes meaningfully to the quality of life of autistic people. It has failed them, and the evidence is in the statistics. To address this crisis, we must strive to understand the autistic experience and how we can reduce the barriers they face to accessing care.
It is essential to begin by recognising our own biases and understanding that autistic people come in all shapes and sizes and with different support needs. Our approach needs to be focused on providing person-centred care that aims to address the barriers autistic people face to thrive in an environment not designed for them. Some practical ways psychologists could consider adapting their work include the following:
- Qualitative analysis: This approach values personal narratives and focuses on subjective reality, highlighting the importance of learning from autistic people and research led by the autistic community to better understand the autistic experience.
- Collaborative treatment: Develop collaborative treatment and support plans with autistic clients, respecting their autonomy and acknowledging them as experts on their experiences. This involves modifying therapeutic approaches, communication styles, and environmental factors for a more supportive therapeutic environment.
- Respecting autonomy and consent: Ensure autistic clients are fully informed about their care options and actively involved in decision-making processes. This ethical stance respects their right to choose the support that aligns with their preferences.
- Implementing environmental interventions: Adjust environments to accommodate autistic individuals' sensory and communication needs, such as modifying lighting and tactile environments and providing structured information to reduce anxiety and support engagement.
In conclusion, the shift toward a neurodiversity-affirming approach represents a critical step in addressing the mental health crisis among autistic people. By recognising autism as a natural variation of the human brain and focusing on strengths-based, person-centred care, we can create more inclusive and supportive environments. This paradigm shift not only challenges societal and clinical perceptions but also ensures that the dignity and well-being of autistic individuals are upheld. Embracing these principles is an ethical necessity and a bridge to fostering a society where every autistic person can thrive. As psychologists, our commitment to adapting our practices to these insights will be instrumental in leading this change, marking a move toward a more understanding, accommodating, and supportive world for all autistic people.
If you or someone you love is contemplating suicide, seek help immediately. For help 24/7, dial 988 for the 988 Suicide & Crisis Lifeline, or reach out to the Crisis Text Line by texting TALK to 741741. To find a therapist near you, visit the Psychology Today Therapy Directory.
References
Cassidy, S., Bradley, P. A., Robinson, J., Allison, C., McHugh, M., & Baron-Cohen, S. (2014). Suicidal ideation and suicide plans or attempts in adults with Asperger’s syndrome attending a specialist diagnostic clinic: a clinical cohort study. The Lancet Psychiatry, 1(2), 142–147. https://doi.org/10.1016/s2215-0366(14)70248-2
Cherewick, M., Matergia, M. Neurodiversity in Practice: a Conceptual Model of Autistic Strengths and Potential Mechanisms of Change to Support Positive Mental Health and Wellbeing in Autistic Children and Adolescents. Adv Neurodev Disord (2023). https://doi.org/10.1007/s41252-023-00348-z
Hirvikoski, T., Mittendorfer-Rutz, E., Boman, M., Larsson, H., Lichtenstein, P., and Bölte, S. (2016). Premature mortality in autism spectrum disorder. BJPsych 208, 232–238. doi: 10.1192/bjp.bp.114.160192
Lai, MC. Mental health challenges faced by autistic people. Nat Hum Behav 7, 1620–1637 (2023). https://doi.org/10.1038/s41562-023-01718-2
Malik-Soni, N., Shaker, A., Luck, H. et al. Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood. Pediatr Res 91, 1028–1035 (2022). https://doi.org/10.1038/s41390-021-01465-y
Oakley, B. F., Tillmann, J., Ahmad, J., Crawley, D., San José Cáceres, A., Holt, R., Charman, T., Banaschewski, T., Buitelaar, J., Simonoff, E., Murphy, D., & Loth, E. (2021). How do core autism traits and associated symptoms relate to quality of life? Findings from the Longitudinal European Autism Project. Autism, 25(2), 389–404. https://doi.org/10.1177/1362361320959959
Pantazakos T and Vanaken G-J (2023) Addressing the autism mental health crisis: the potential of phenomenology in neurodiversity- affirming clinical practices. Front. Psychol. 14:1225152. doi: 10.3389/fpsyg.2023.1225152
