Carers’ views on autism and eating disorders comorbidity: qualitative study

Adamson, James; Kinnaird, Emma; Glennon, Danielle; Oakley, Madeleine; Tchanturia, Kate

doi:10.1192/bjo.2020.36

Cited by 27 publications

(58 citation statements)

References 34 publications

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“…The interviews were initiated using a pre-developed interview schedule, based on previous research [22,28,32] that exploredcarers needs by research team. This schedule was then revised iteratively over the course of the interviews to follow the concerns of participants.…”

Section: Data Collectionmentioning

confidence: 99%

“…This study similarly found that ASC and AN were highly interrelated and potentially associated with unique treatment needs compared to people with AN only, such as requiring support around sensory di culties and longer time in treatment. Although Adamson & Kinnaird, et al (2020) focused on carer views on treatment adaptations for their loved ones, the ndings indicated that the carers themselves experience high levels of unmet needs, a perceived lack of support from existing services, and subsequent feelings of isolation and frustration. This study suggested that this group may potentially bene t from support designed speci cally for carers of people with ASC and AN.…”

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confidence: 99%

“…Consequently, parents caring for a child with ASC are likely to experience additional challenges that may not be typically experienced by a parent caring for a child with an ED only, and so may not be addressed by existing caregiver interventions or support for ED caregivers. To date, two qualitative studies have explored the experiences of carers of children with a diagnosis of both ASC and AN [21,28]. Brede et al (2020) explored the relationship between restrictive eating di culties and ASC with carers, patients and clinicians.…”

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confidence: 99%

“…They found that ASC and AN are closely intertwined, and that women with both conditions have different needs compared to people with AN only. Adamson & Kinnaird et al (2020) also explored this area, but from the perspective of interviewing carers about treatment adaptations for people with both ASC and AN. This study similarly found that ASC and AN were highly interrelated and potentially associated with unique treatment needs compared to people with AN only, such as requiring support around sensory di culties and longer time in treatment.…”

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confidence: 99%

“…Therefore, the initial aim of this study was to use qualitative interviews to further explore the support needs of carers of loved ones with co-occurring ASC and AN, and to investigate in more detail carer views on how this population can best be supported. In the context of previous ndings indicating a perceived lack of support and alienation from existing ED services, the existing study used a peer interviewing approach, in which the interviewer was also a carer of a young person with ASC [28]. Peer interviewing is becoming an increasingly popular approach in qualitative research: it has the bene t of increasing engagement and comfort of participants who may have previously had di cult relationships with clinical services, as previously described by this population [28][29][30].…”

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confidence: 99%

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A peer interview qualitative study exploring support for carers of people with comorbid autism and eating disorders

Kinnaird

Oakley

Lawrence

et al. 2020

Preprint

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Background Carers of people with eating disorders (EDs) are known to experience a lack of support, high levels of unmet needs and resulting distress. Specific support and interventions for carers may benefit both the carer, and their loved one with an ED. Individuals with co-occurring autism spectrum condition (ASC) and EDs may present with additional needs and difficulties relating to their ASC that impact their carers. However, there is a lack of research exploring whether carers of people with ASC and EDs have specific support needs, and what kinds of support may be most beneficial for this population. Methods This study used a qualitative interview design, utilising peer interviews. Eleven carers participated in interviews about their experiences as a carer, and their views on existing support systems and potential improvements. As the study took place during the initial UK coronavirus lockdown, the impact of the lockdown also emerged as a topic during the interviews. Interviews were transcribed and analysed using thematic analysis. Results Five themes were identified: challenges associated with co-occurring ASC and EDs, a lack of existing support for carers from healthcare services, the personal impact of caring for someone with both ASC and EDs, ideas for how carers can be best supported, and the impact of the coronavirus on carers. Conclusions Carers of loved ones with both ASC and EDs described the experience as having a significant personal impact on their lives, but also experienced a lack of support from healthcare services. There was a perception that caring for someone with both an ASC and EDs presents additional challenges compared to caring for someone with an ED only, and that this population therefore requires specialised support. Recommendations for possible support options, and for further research, are outlined.

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Section: Data Collectionmentioning

confidence: 99%

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confidence: 99%

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confidence: 99%

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confidence: 99%

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confidence: 99%

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A peer interview qualitative study exploring support for carers of people with comorbid autism and eating disorders

Kinnaird

Oakley

Lawrence

et al. 2020

Preprint

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Challenges and opportunities for conceptualizing intuitive eating in autistic people

Longhurst,

Burnette

2023

Intl J Eating Disorders

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Although intuitive eating (IE) has become an increasingly adopted intervention target, current conceptualisations of IE have yet to pivot away from (neuro)normative physiology and phenomenology. Autistic individuals commonly report disordered eating behaviours and/or poorer well‐being but appear to benefit from adaptive interventions using an affirmative approach. This article uses autism as a case example to summarise challenges related to IE's prevailing conceptualisation, before proposing how future research and current practice can be extended to the autistic population. Scholars are encouraged to evaluate the full 10‐principal IE framework while utilising a participatory‐led approach. We argue that research using a mixed methods design is urgently needed to comprehensively explore the (re)conceptualisation of IE in autistic people. While IE shows promise for producing positive outcomes in the autistic population, we discuss the potential challenges for research and practice due to its current emphasis on accurate interoception, emotional awareness and processing, and executive functioning. This suggests the need for research and practice to integrate autistic needs and experiences into future developments with an affirmative approach. Public Significance: IE is an effective intervention for reducing disordered eating behaviours. Autistic individuals commonly present disordered eating behaviours and have unique nutritional needs which often require intervention. However, there is limited understanding of IE among the autistic population. Research‐informed definitions involving autistic perspectives will support translating the IE framework to this underrepresented population.

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Towards identifying a method of screening for autism amongst women with restrictive eating disorders

Adamson

Brede

Babb

et al. 2022

Euro Eating Disorders Rev

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Objective: Up to 37% of patients with anorexia nervosa score above cut-off on autism screening measures. These individuals typically have poorer outcomes from standard eating disorder interventions and could therefore benefit from adaptations. Accurately identifying these individuals is important for improving autism referral processes and clinical pathway decisions. This study's aim was to identify subscales of questionnaires measuring constructs associated with either autism or eating disorders that, when combined with traditional autism screening measures, would improve the ability to identify women with restrictive eating disorders who might benefit from a full autism assessment.Method: One hundred and sixty women with restrictive eating disorders, with (n = 42) or without (n = 118) an autism diagnosis completed a battery of questionnaires. Using conditional stepwise binary logistic regression, we attempted to improve the autism spectrum quotient 10 item's (AQ-10) ability to discriminate between autistic and non-autistic women in a restrictive eating disorder sample. Results: In a binary logistic regression model, the AQ-10 reliably discriminated between autistic and non-autistic women with an accuracy rate of 85% but had relatively low (69%) sensitivity, reflecting a high rate of false negatives.Adding three subscales to the model (Glasgow Sensory Questionnaire Auditory, Camouflaging Autistic Traits Questionnaire Compensation and Toronto Alexithymia Scale Externally Orientated Thinking) significantly improved its differentiating ability (accuracy = 88%, sensitivity = 76%, specificity = 92%). Conclusions: We have identified three subscales that, when used in combination with the AQ-10, may help clinicians understand the pattern of autistic traits in their patients with a restrictive eating disorder. This can inform

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Carers’ views on autism and eating disorders comorbidity: qualitative study

Cited by 27 publications

References 34 publications

A peer interview qualitative study exploring support for carers of people with comorbid autism and eating disorders

A peer interview qualitative study exploring support for carers of people with comorbid autism and eating disorders

Challenges and opportunities for conceptualizing intuitive eating in autistic people

Towards identifying a method of screening for autism amongst women with restrictive eating disorders

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