By Emma Hinze, Professor Tony Attwood and Dr. Michelle Garnett
Research highlights a startling reality: approximately 40% of autistic individuals experience depression at some point in their lives (Hollocks et al., 2019). This number is not just a statistic; it represents a significant portion of the autistic community who face profound challenges. The impact of depression on autistic people is far-reaching, diminishing their quality of life (Oakley et al., 2021), heightening the risk of suicidal ideation and attempts (Cassidy et al., 2018; Hirvikoski et al., 2016), and increasing feelings of loneliness and employment difficulties (Hedley et al., 2017). Additionally, the ripple effects extend to caregivers, who face increased stress and challenges (Cadman et al., 2012).
What is Depression?
As defined in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5-TR; (American Psychiatric Association [APA], 2022), Major Depressive Disorder (MDD) is diagnosed when at least five symptoms are present for a minimum of two weeks, including either a depressed mood or a loss of interest in enjoyable activities, and these symptoms must significantly impair daily functioning. Additional symptoms include changes in appetite or sleep patterns, psychomotor activity alterations (reduction in movement or purposeless movements), feelings of worthlessness or guilt, diminished concentration, fatigue, and recurrent thoughts of death or suicide (APA, 2022).
The Diagnostic Problem
It can be challenging to recognise depression in autistic individuals due to the intricate nature of the condition. One issue lies in the shared similarities between autistic traits and depressive symptoms, such as social withdrawal and challenges with sleep and appetite, which may be observed in both conditions. This can lead to misdiagnosis or underdiagnosis of depressive disorders (Cassidy et al., 2018; Chandrasekhar, 2015), a phenomenon called diagnostic overshadowing, where symptoms of depression are mistakenly attributed to autism itself, obscuring the presence of a co-occurring depressive disorder (Oakley et al., 2021).
Presentations of Depression
Autistic individuals may share many common depression symptoms with non-autistic individuals. However, the manner in which they express and communicate these symptoms can significantly differ, influenced by their unique cognitive and sensory processing. These symptoms include:
- Depressed Mood: Feeling sad, unhappy, or distressed.
- Anhedonia: Loss of interest in activities once found pleasurable.
- Feeling worthless and guilty: Engaging in negative self-talk, harbouring feelings of guilt, and experiencing low self-esteem.
- Changes in appetite: Experiencing a significant decrease or increase in appetite, which may lead to weight loss or gain.
- Sleep problems: Difficulty falling asleep, staying asleep, waking up too early, or sleeping too much.
- Difficulty concentrating: Struggling to focus on tasks, make decisions, or remember details.
- Feeling tired and lacking energy: Experiencing low motivation and fatigue, even when doing little to no activity.
- Psychomotor changes: Experiencing either an increase in restlessness (psychomotor agitation) or a slowing down of thought and a reduction of physical movements (psychomotor retardation).
- Thoughts of self-harm or suicide: Having recurrent thoughts of death, suicidal ideation, or suicide attempts.
However, depression might present differently in autistic people:
- Irritability or frustration: Feeling more frustrated or angry than usual, especially if unable to explain or understand one’s feelings. This may be directed towards themselves or others.
- Heightened Needs for Camouflaging and Social Withdrawal (‘Double Masking’): Autistic individuals frequently engage in ‘Double Masking’—concealing both their autistic traits and signs of depression to fit in and avoid the stigma or negative judgment associated with depression, leading to considerable mental and physical exhaustion. This dual layer of camouflage aims to smooth over social interactions but at a significant cost to mental and physical health. This fear contributes to reduced social engagement, with individuals withdrawing from friendships and social activities to avoid revealing their struggles. Such withdrawal is compounded by concerns over altering others’ perceptions or inadvertently damaging relationships due to their mood variability.
- Changes in autistic traits: Increasing self-soothing behaviours like stimming (repetitive movements or sounds), which may be more pronounced during periods of stress or depression. Such behaviours are often a sign of trying to cope with overwhelming emotions or sensory input, serving as a mechanism to manage distress and provide a sense of comfort and stability.
- Loss of learned skills: Encountering difficulty with tasks that were previously mastered, such as toileting, personal hygiene, or dressing.
- Reduced interest in special interest: Losing interest in topics or activities that were once a source of joy and engagement, which can significantly impact well-being.
- Expression through physical symptoms: Expressing emotional distress through physical symptoms like headaches, stomach aches, or other somatic complaints.
- Externalising behaviour: Exhibiting agitated or externalised depression through actions like the destruction of property or physical assault. These actions often reflect deeper emotional struggles, where irritations and frustrations are misdirected towards family members or activities, signalling a heightened response to depressive states. This can be particularly challenging to recognise as a sign of depression in autistic individuals, especially if there is an intellectual disability, where anger and aggression may not be readily identified as linked to depressive feelings.
Where to from here:
Our online course Exploring Depression and Beating the Blues offers a ten-stage programme to treat autistic adolescents and adults who are suffering from depression. The course was designed by Tony and Michelle and is based on their deep understanding of how to treat autistic individuals who suffer depression, as well as current research. Exploring Depression can be delivered as an individual or group therapy programme or can be utilised as a self-help guide at home, with the assistance of a carer or family member. The course is designed to be beneficial for clinicians, parents and partners but would also be useful for an autistic teenager or adult. Reasons an autistic person can become depressed are described, each of the stages of the programme are presented, and strategies for how to implement each stage are shared.
References:
Association, A. P. (2022). Diagnostic and statistical manual of mental disorders : DSM-5-TR (Fifth edition, text revision. ed.). American Psychiatric Association Publishing. https://dsm.psychiatryonline.org/doi/book/10.1176/appi.books.9780890425787
Cadman, T., Eklund, H., Howley, D., Hayward, H., Clarke, H., Findon, J., Xenitidis, K., Murphy, D., Asherson, P., & Glaser, K. (2012). Caregiver burden as people with autism spectrum disorder and attention-deficit/hyperactivity disorder transition into adolescence and adulthood in the United Kingdom. J Am Acad Child Adolesc Psychiatry, 51(9), 879-888. https://doi.org/10.1016/j.jaac.2012.06.017
Cassidy, S. A., Bradley, L., Bowen, E., Wigham, S., & Rodgers, J. (2018). Measurement properties of tools used to assess depression in adults with and without autism spectrum conditions: A systematic review. Autism Research, 11(5), 738-754.
Cassidy, S., Bradley, L., Shaw, R., & Baron-Cohen, S. (2018). Risk markers for suicidality in autistic adults. Molecular Autism, 9(1), 1-14. https://doi.org/10.1186/s13229-018-0226-4
Chandrasekhar, T., & Sikich, L. (2015). Challenges in the diagnosis and treatment of depression in autism spectrum disorders across the lifespan. Dialogues in clinical neuroscience, 17(2), 219-227.
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