This study explored how adults with autism1
experience low mood and depression. Depression is a broad and heterogenous diagnosis characterised by lowered mood, loss of pleasure in most activities and somatic or intellectual changes that affect an individual’s ability to function in daily life (American Psychiatric Association 2013
). Depression has been identified as a major public health concern because of its chronic, reoccurring nature and impact on physical health (World Health Organisation 2018
Individuals with autism are more likely than the general population to experience co-occurring mental health difficulties (Joshi et al. 2013
; Smirnoff et al. 2008
; Kanne et al. 2009
). Depression is the most common mental health condition experienced by autistic people (Ghaziuddin et al. 2002
), and compared to typically developing individuals, autistic people are 4-times more likely to experience depression in their lifetime (Hudson et al. 2019
). Evidence indicates that the presence of depression may worsen the degree of ASC (Autism Spectrum Condition) related impairment (Roy et al. 2015
), negatively impact on support networks (Gold 1993
) and increase risk of suicide (Cassidy et al. 2014
). Additionally, individuals with ASC have an increased risk of suicide attempts compared with those without ASC (Chen et al. 2017
The emotional processing and communication difficulties that are typical for people with autism make it challenging to accurately diagnose depression in this population (Leyfer et al. 2006
). Symptoms of depression may also present differently for autistic people, with increases in social withdrawal, aggression and crying being more common (Ghaziuddin et al. 2002
). Furthermore, depressive symptoms overlap with behaviours typical to ASC (Mazzone et al. 2012
). Prevalence rates have therefore been inconsistently reported to range from 5 to 82% (Shtayermman 2007
). Further understanding of depression, when experienced by autistic adults, is needed to improve assessment procedures, interventions and support for this population (Wigham et al. 2017
Previous research has explored the aetiology of depression in the ASC population. Sterling et al. (2008
) examined the relationship between severity of ASC symptoms, level of cognitive ability and the occurrence of depressive symptoms in adults with ASC. It was concluded that individuals with ASC, who have an awareness of their social difficulties, are more likely to experience depression than those without awareness. Additionally, it was reported that individuals who have an interest in social interaction, but do not have the skills to execute successful social relations, are at increased risk of experiencing depression (Ozonoff et al. 2002
). It is therefore possible that having the motivation to form social relationships, and an awareness of an impaired ability to do so, contributes to negative affect (Sterling et al. 2008
; Vickerstaff et al. 2007
Hedley and Young (2006
) investigated social comparison processes and depression in children and adolescents with autism. The perception of differences between self and others was reported to be related to depressive symptoms, and it was concluded that social comparison is a prominent factor related to depressive symptoms in this group. Sterling et al. (2008
) supported this finding and reported that depression is more common in autistic adolescents as they develop an awareness of societal expectations to establish significant relationships, increase independence, and gain employment. Awareness of a developmental gap between themselves and their peers may therefore be part of the experience of depression for this population. However, this research focused on depression in children and adolescents and therefore lacks generalisability to the adult population.
) explored experiences of four adolescents diagnosed with ASC and co-occurring depression, as well as those of their parents. The participants discussed school related issues, prevention of victimisation and mental health issues. Findings indicated that significant teasing from peers, and an awareness of difference, contributed to the experience of low mood. Additionally, depressive symptoms, such as becoming increasingly withdrawn and losing interest in favourite topics, were reportedly dismissed by professionals as being part of ASC. The young people and their parents therefore felt left to navigate mental health issues on their own, with little support from professionals. As this study focussed on the experiences of adolescents further research is required to develop an understanding of the experiences of adults with ASC and depression.
Capps et al. (1993
) pointed to a lack or absence of emotion in people with ASC. However, Jones et al. (2001
) used a thematic approach to analyse first-hand accounts of five autistic people, who had published their experiences online, and found evidence to the contrary. This study reported that emotional issues were important to this population and depression was communicated as a significant emotion. Within these accounts, depression was related to a sense of not belonging, difficulties understanding why they were different and being ridiculed by others. As analysis was conducted on accounts that were published online, it was not possible for the researchers to further explore the individuals’ experiences of depression.
Research has uncovered a relationship between social difficulties, awareness of these difficulties, social comparisons and depression. However, research in this area has left the subjective lived experiences of adults with ASC poorly understood. This study therefore seeks to explore how autistic adults experience depression and low mood.
All interviews were audio-recorded and transcribed verbatim. Following transcription, the interview transcripts and diary entries were analysed using IPA. In line with the procedure set out by Smith et al. (2009
), the primary researcher began by listening to the first audio recording and reading the corresponding transcript multiple times, whilst writing freely in the margins about initial thoughts, emotions, and interpretations of the content. This technique, ‘free coding’, allowed for the recognition of any preconceptions, and their impact on the researcher’s understanding of the data to be minimised (Elliott et al. 1999
). Next, the researcher annotated each transcript line by line highlighting objects of concern; things that mattered to the participant. The focus was on experiential content and on identifying what the objects of concern meant to the participant, to allow for the identification of emerging themes. This process was repeated for each individual transcript and diary entry. The emerging themes were then clustered together, given labels, and the relationships between them were considered. At this point themes that had not been supported by evidence were eliminated.
One participant opted to draw in their diary to communicate regarding their experience of low mood. The participant was invited to discuss their drawing during interview, and a copy of the image has been included in the results to supplement the findings.
Validity and Credibility
To increase validity of the initial coding, a second researcher provided peer validation by coding transcript extracts. Additionally, themes were co-developed by three members of the research team. Relevant transcript excerpts have been included in the results to validate the emergent themes.
This study was conducted to explore the lived experiences of autistic adults who experience low mood and depression. The participants’ accounts revealed new insights regarding experiences that negatively impact mood for adults with autism.
Nearly all participants reflected that they were different from their peers, and that awareness of their differences negatively impacted their beliefs about themselves and their mood. This finding supports previous research that concluded that the perception of difference between self and others, and a sense of not belonging, is related to depressive symptoms (Hedley and Young 2006
; Jones et al. 2001
). Previous research also highlighted how experiencing feelings of difference, without a real understanding of why, causes individuals to internalise the negative attitudes of others and develop low self-esteem (Davies and Neal 1996
Punshon et al. (2009
) reported that accommodating a diagnosis of ASC is a process that may take several months, if not years, and highlighted how important receiving a diagnosis was to provide an explanation of behaviour. The current study supported these findings, as nearly all participants expressed (1) the belief that being diagnosed helped contextualise their difficulties and contributed to improved self-opinions and (2) a period of readjustment was required to come to terms with the news. Moreover, participants reported pride in their unique abilities and personality characteristics, supporting previous research which highlighted that autistic traits can be helpful, depending on context (Russell et al. 2019
Acting ‘normal’ was a feat that most participants felt was important. These findings highlighted that engaging in a way that is not authentic can contribute to a sense of lost identity. Additionally, attempting to ‘mask’ or hide difficulties appeared to perpetuate low mood. Furthermore, several participants described withdrawing from social interaction when their ability to ‘act normal’ was impacted by low mood, perpetuating their difficulties. This finding further supports Hedley and Young (2006
) who concluded that a sense of loneliness, driven by poor social relationships, contributes to levels of depression. However, two participants, who were both diagnosed during childhood, did not narrate the need to ‘act normal’. For them, having a diagnosis of ASC served as an explanation of their differences for others, thus mitigating the need to ‘act normal'. Participants that were diagnosed later in life however described the need to try and fit in, as they did not yet have an explanation for their differences.
All participants reflected on the impact of interpersonal difficulties on their mood. Common amongst participant narratives was the belief that they did not have a good enough understanding of relationships. As a result, many participants chose to be self-reliant and experienced feeling alone and isolated. These findings support the assertion that increased levels of negative affect may be related to poor quality social relationships for people with ASC (Whitehouse et al. 2008
). These findings also support Gable and Sheen (2000
) who highlighted that lower self-perceived social competence predicts depression.
Several participants made connections between their perceived limited capacity to read social situations, employment difficulties and subsequent negative affect. This finding supports Hurlbutt and Chalmers (2004
) who reported that many people with ASC experience difficulties gaining and maintaining employment. Analysis of these accounts indicated that high levels of shame, and consequent withdrawal from social situations, can accompany difficulties maintaining employment. These findings corroborate previous research which asserted that employment difficulties negatively affect the wellbeing of autistic adults (Blustein et al. 2013
Regarding emotions, participants described a very cognitive experience whereby they attempt to develop insight into how they feel by analysing their thoughts and the context around them. Several participants also identified a desire to understand their emotions, but an inability to do so. Many people with ASC report difficulty identifying and describing their emotions (Bird et al. 2010
). Within this research, the inability to recognise and communicate emotions was understood as a barrier to seeking support. Similarly, participants within Camm-Crosbie et al. (2018
) study reported that having poor emotional literacy made it difficult for them to recognise and communicate that they needed support.
It was evident that several participants experienced difficulties when accessing therapeutic support. It was felt that there is not enough mental health provision, and that clinical staff do not have a good enough understanding of autism, contributing to negative outcomes and perpetuating negative self-beliefs. These experiences are not unique to the participants included in this study; previous research highlighted that receiving support that is not tailored to individual needs contributes to feelings of disempowerment, isolation and hopelessness for autistic adults (Camm-Crosbie et al. 2018
However, regarding low mood, nearly all participants described a very physical experience. It was reflected that having an inability to control their own physiological reactions increased feelings of self-consciousness and fears of being judged by others. This finding offers new insights into how low mood is experienced for this population.
Additionally, previous research highlighted that depression in ASC is associated with increased suicidality, with up to 72% of cases reporting suicidal ideation (Zahid and Upthegrove 2017
). A history of depression has been identified as a significant risk factor. However, Cassidy et al. (2014
) reported that more individuals in their study reported suicidal ideation than had a history of depression, indicating that it is possible that there may be a different route to suicidality for persons with ASC. No themes concerning suicidality were derived from this study, supporting the notion that there may be a different route to suicidality for this population.
Limitations and Future Research
It is noted that the topic of suicidality was not attended to by participants who participated in this research. As adults with ASC without intellectual disabilities are at highest risk of contemplating suicide (Cassidy et al. 2014
), and of dying by suicide (Hirvikoski et al. 2016
), it is imperative that future research investigates the route to suicidality for this population.
The findings presented here are based primarily on the experiences of males. It is recognised that the autism phenotype is altered for females, and that females with ASC are typically under-represented in research. Further research is required to explore how autistic females experience low mood and depression. Additionally, three individuals were excluded from this study because they had a diagnosis of bipolar disorder. Although bipolar disorder is being frequently diagnosed amongst adults with ASC (Magan-Maganto et al. 2018
) there is a dearth of research on the experience of living with bipolar disorder (Proudfoot et al. 2009
). A need for further research in this area is therefore indicated. Future research would also benefit from investigating the role that awareness of one’s own autistic condition has on autistic symptomology, and experience of low mood and depression.
Experts by experience were consulted during the design stage of this study but they were not involved in the data-collection or data-analysis stages of this research. The exclusion of individuals with ASC from meaningful involvement, in all stages of the research process, is problematic and constitutes a barrier to research impact (Milton and Bracher 2013
). Further participatory action research, in which people with ASC engage as equal partners throughout the research process, is required (Nicolaidis et al. 2011
This study indicated that achieving a late-in-life diagnosis can be valuable for adults; it can improve self-awareness and access to limited support. The need for tailored post-diagnostic support, to ensure individuals positively accommodate the diagnosis and identify their individual skills and strengths, is also evident.
Additionally, this research highlighted the need for specialist services that cater to the diverse needs of autistic adults. Clinicians working within mental health services require training to ensure they are knowledgeable about mental health and autism and are able to make reasonable adaptations (Ghaziuddin et al. 2002
; Camm-Crosbie et al. 2018
Furthermore, as many people with ASC have difficulty identifying and describing their emotions, they may benefit from support with emotional literacy prior to engaging with psychological therapies (Camm-Crosbie et al. 2018
). Psycho-education regarding emotions, and the link between feelings and physiology, may also reduce the difficulties experienced by individuals who describe embodying their emotions. Moreover, several participants reported that they found the visual aid included with the mood diary incredibly helpful when attempting to identify and describe their emotions. Having access to visual aids may support communication regarding emotions, both inside and outside of therapy.
Finally, participants in this study described difficulties with establishing rapport with their therapist and with completion of in-between session tasks. These findings indicate that more long-term therapy is needed (Anderberg et al. 2017
) and that assigned therapeutic tasks should be small. Recruiting a family member to support the individual with therapy may also be beneficial.
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