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Cited by 416Autism Spectrum Disorder ResearchSuicide and Self-Harm StudiesFamily and Disability Support Research

‘People like me don’t get support’: Autistic adults’ experiences of support and treatment for mental health difficulties, self-injury and suicidality

Open access
Camm-Crosbie, Louise, Bradley, Louise, Shaw, Rebecca, Baron-Cohen, Simon, Cassidy, Sarah·2019·Autism
DOI 10.1177/1362361318816053PMC PMC6625034
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Abstract

Autistic people are at high risk of mental health problems, self-injury and suicidality. However, no studies have explored autistic peoples’ experiences of treatment and support for these difficulties. In partnership with a steering group of autistic adults, an online survey was developed to explore these individuals’ experiences of treatment and support for mental health problems, self-injury and suicidality for the first time. A total of 200 autistic adults (122 females, 77 males and 1 unreported) aged 18–67 (mean = 38.9 years, standard deviation = 11.5), without co-occurring intellectual disability, completed the online survey. Thematic analysis of open-ended questions resulted in an overarching theme that individually tailored treatment and support was both beneficial and desirable, which consisted of three underlying themes: (1) difficulties in accessing treatment and support; (2) lack of understanding and knowledge of autistic people with co-occurring mental health difficulties and (3) appropriate treatment and support, or lack of, impacted autistic people’s well-being and likelihood of seeing suicide as their future. Findings demonstrate an urgent need for autism treatment pathways in mental health services.

AI snapshot

Written from the paper’s full text.

TL;DR

In an online survey of 200 autistic adults without co-occurring intellectual disability, participants described tailored treatment and support as beneficial and desirable but often inaccessible. Thematic analysis identified barriers in access, professionals’ lack of autism knowledge, and impacts on well-being, including whether suicide was seen as a future.

Key findings

  • Of 200 participants, 90.4% had a mental health diagnosis, most commonly depression and anxiety. For treatment (n = 197), 164 (83.2%) had received or were receiving treatment, while 29 (14.7%) needed/currently needed treatment but had not received it; for support (n = 198), 164 (82.8%) wanted or currently received support, and among those who wanted support and answered on support types (n = 159), 76 (47.8%) currently received none.
  • The overarching theme was that individually tailored treatment and support was both beneficial and desirable, with three underlying themes: difficulties accessing treatment and support; lack of understanding and knowledge of autistic people with co-occurring mental health difficulties; and appropriate treatment and support, or lack of, impacting well-being and likelihood of seeing suicide as their future.
  • Reported barriers included being dismissed as “coping” (26 participants), support geared towards autistic children (9), long waiting lists and lack of funding (37), lack of local treatment (12), professionals’ poor autism knowledge (89), obstacles to accessing/receiving treatment and support (34), not being believed or listened to (29), and treatment not suited to needs (38).
  • Positive and enabling experiences were reported by 63 participants, including improved mental health and well-being; 7 participants said suicide was no longer viewed as part of their future, and some described treatment/support as the reason “I am still alive” (1F) or that “I would not be alive without it” (435M).

Methods

  • A participatory online survey was developed with an autistic steering group of eight autistic adults without intellectual disability (six female, two male) across six focus groups; the steering group fed back on three drafts.
  • Participants were 200 autistic adults without co-occurring intellectual disability, aged 18–67 (mean = 38.9 years, SD = 11.5), recruited from the United Kingdom through the Cambridge Autism Research Database, charities and support groups, educational institutions, and social media.
  • Open-ended survey responses were analysed using thematic analysis (Braun and Clarke, 2006), from an essentialist, inductive, data-driven position; L.C.-C. carried out the analysis, with themes discussed and refined with S.C. and L.B.

Limitations

  • The paper states that respondents were autistic adults able to respond independently online, so results are not generalisable to those with co-occurring intellectual disability; the majority of the sample were autistic women, opposite to the gender bias in the wider autistic population; and many participants had experienced mental health treatment and may have responded because they felt the survey was important, so they may not represent non-responders.
  • The paper also states that diagnoses were self-reported, the exploratory qualitative approach cannot draw conclusions on prevalence, only a snapshot of main themes could be displayed, the broad age of autism diagnosis (2–59 years) was not analysed for delayed-diagnosis effects, and treatment and support were not distinguished because participants used the terms interchangeably.
  • Evident from the text: the sample is self-selected and predominantly female, and the findings rely on self-report and qualitative interpretation, so the frequency counts are presented as gauges of shared experience rather than prevalence estimates.

Model-written summary. Check it against the paper before relying on it.

Integrity signals

Registry

Crossref · 10.1177/1362361318816053

Cites

45 of 45 references verified0 citation errors · 0 not checkable

Statistics

Nothing to recompute.

Claims the paper makes

0 of 59 cited sources checked · 0 supported · 0 flagged

  • Findingown data

    For other participants, suicide was no longer viewed as part of their future (seven participants).

    “For other participants, suicide was no longer viewed as part of their future (seven participants):”
    Quote in the paperNot a substantial claim
  • Findingown data

    For some, the experience of being autistic and having co-occurring mental health issues seemed one of falling through a gap in available services (37 participants).

    “For some then, the experience of being autistic and having co-occurring mental health issues seemed one of falling through a gap in available services (37 participants).”
    Quote in the paperSubstantial claim
  • Findingown data

    For some, positive experiences of treatment and support made a totally life-changing difference to their lives.

    “For some, these experiences made a ‘totally life changing difference to my life’ (620F).”
    Quote in the paperNot a substantial claim
  • Findingown data

    For some participants, the absence of appropriate treatment and support was at the root of the negative impact on their lives (51 participants).

    “For other participants, the absence of appropriate treatment and support was at the root of the negative impact on their lives (51 participants):”
    Quote in the paperSubstantial claim
  • Findingown data

    Participants described how their need for support was dismissed due to non-autistic people's (mis)perceptions of 'high-functioning' ASC (26 participants).

    “Participants described how their need for support was dismissed due to non-autistic people’s (mis)perceptions of ‘high-functioning’ ASC (26 participants).”
    Quote in the paperSubstantial claim
  • May combine two claims. 48
  • The quote only partly states this claim. 1
  • Classified as probably not a substantial claim. 19

  • May combine two claims. The quote only partly states this claim.

    Findingown data

    The study included 200 autistic adults (122 females, 77 males, 1 unreported) aged 18-67 (mean 38.9, SD 11.5) without co-occurring intellectual disability.

    “A total of 200 autistic adults were included in the qualitative analysis (122 females, 77 males and 1 unreported), aged 18–67 (M = 38.9 years, SD = 11.5).”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Participants felt excluded from society and the local community.

    “Participants also felt excluded from society and the local community: ‘I miss out on my vibrant town’s many events because I can’t cope with the noise and crowds on my own’ (131F).”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    Not feeling alone made participants feel safe and provided emotional reassurance (10 participants).

    “Participants also wrote of how not feeling alone (10 participants) made them feel ‘safe’ (28F) and provided them with ‘emotional reassurance’ (7F).”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    Absent or inappropriate support caused participants to feel hopeless, isolated and alone (eight participants).

    “Absent or inappropriate support caused participants to feel hopeless, isolated and alone (eight participants):”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    With support, life had become manageable and participants were helped to cope better with life.

    “With support, life had become ‘manageable’ (181F) and ‘help[ed] me cope better with life’ (143F).”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    Many participants argued CBT was not effective (22 participants), particularly if it was not adapted to their needs.

    “However, many argued it was not (22 participants), particularly if it was not adapted to their needs”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Findingown data

    A majority (90.4%) of participants had a mental health diagnosis, most prevalent being depression and anxiety.

    “A majority (90.4%) of participants had a mental health diagnosis, most prevalent being depression and anxiety.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    Participants often felt entirely dependent on informal support, as external support was inadequate in addressing their needs, but wanted to become more independent and felt guilty (7F).

    “Participants often felt entirely dependent on this support, as external support was inadequate in addressing their needs, but wanted to become more independent and felt ‘guilty’ (7F).”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Appointments were not long or frequent enough to 'make yourself well' and were tainted by worries of them coming to an end (eight participants).

    “Appointments, however, were not long or frequent enough to ‘make yourself well’ (47M) and tainted by worries of them coming to an end (eight participants)”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Thoughts of ending life were a reality for some participants, who described suicide as an inevitability (four participants).

    “Thoughts of ending life were a reality for some participants, who described suicide as an inevitability (four participants):”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Participants identified long waiting lists and lack of funding (from the NHS in the UK; 37 participants) as reasons for there being no treatment or support available to them, even if actively suicidal (9 participants).

    “Participants identified long waiting lists and lack of funding (from the National Health Service (NHS) in the United Kingdom; 37 participants) as reasons for there being no treatment or support available to them, even if actively suicidal (9 participants)”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Findingown data

    Underneath this overarching theme, there were three themes: 'people like me don't get support', 'lack of understanding and knowledge' and 'well-being'.

    “Underneath this overarching theme, sat three themes: ‘people like me don’t get support’, ‘lack of understanding and knowledge’ and ‘well-being’”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    The overarching theme was that tailored treatment and support is both beneficial and desirable.

    “The overarching theme on which this article focuses was that tailored treatment and support is both beneficial and desirable.”
    Quote in the paperSubstantial claim
    • Rests on an assumption: When similar experiences are reported, it provides compelling evidence for a shared understanding of the issues being explored.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Findingown data

    Some participants argued CBT was an effective treatment (eight participants).

    “Some participants argued CBT was an effective treatment (eight participants)”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    Many participants gained access to the treatment and support they needed by paying for it themselves, while those who could not afford to went without (37 participants).

    “Many participants gained access to the treatment and support they needed by paying for it themselves, while those who could not afford to went without (37 participants)”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    In relation to treatment, 164 participants (83.2%) were currently receiving or had previously received treatment, 29 participants (14.7%) needed or currently needed treatment but had not received it, and 4 participants (2%) did not need treatment.

    “In relation to treatment for mental health, self-injury and suicidality (n = 197), 164 participants (83.2%) were currently receiving/had previously received treatment, 29 participants (14.7%) needed/currently needed treatment but had not received it and 4 participants (2%) did not need treatment”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    In relation to support, 164 participants (82.8%) reported that they would like to have support or currently receive support; of those who reported they would like to receive support and answered the question on types of support received (n = 159), 76 participants (47.8%) currently received none.

    “In relation to support, (n = 198) 164 participants (82.8%) reported that they would like to have support or currently receive support. Of those who reported they would like to receive support and answered the question on types of support received (n = 159), 76 participants (47.8%) currently received none”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Although participants reported experiences of being excluded from mental health services, with potentially tragic consequences for their well-being, there are also examples of participants benefitting from tailored support and treatment, which had a positive effect on their well-being.

    “In summary, although participants reported experiences of being excluded from mental health services, with potentially tragic consequences for their well-being, there are also examples of participants benefitting from tailored support and treatment, which had a positive effect on their well-being.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Assumptions were made about autistic people being 'high-functioning' and perceived as coping when in fact they were struggling.

    “Second, assumptions were made about autistic people being ‘high-functioning’ and perceived as coping when in fact they were struggling.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Positive experiences reported a connection to others, acceptance, independence, autonomy and self-understanding, and suicide no longer being an option.

    “In stark contrast to the negative experiences described previously, these positive experiences reported a connection to others, acceptance, independence, autonomy and self-understanding (to name a few) and of suicide no longer being an option.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Difficulties characteristic of autism impacted participants' ability to recognise they need help, effectively request help, and benefit from help when it was finally acquired.

    “Hence, the participants in this study described how difficulties characteristic of autism, impacted their ability to recognise they need help, effectively request help, and benefit from help when it was finally acquired.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingreasoning

    Participants described difficulty in coping with change, which meant they preferred consistent and long-term support and treatment.

    “Subsequently, participants described difficulty in coping with change (a key part of diagnostic criteria for autism, APA (2013), which meant they preferred consistent and long-term support and treatment.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingcitation

    Specific enablers identified include clinicians being both knowledgeable about mental health in autism and flexible in order to make reasonable adaptations to meet autistic peoples' needs.

    “Specific enablers identified include clinicians being both knowledgeable about mental health in autism and flexible in order to make reasonable adaptations to meet autistic peoples’ needs (Ghaziuddin et al., 2002).”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites Ghaziuddin et al., 2002

      Not checked in the free run.

  • May combine two claims.

    Findingown data

    Support alleviated pressure and gave one participant the chance to step outside having to be the good mother, good daughter and good wife and just be herself.

    “One woman wrote of how the support alleviated pressure and ‘gives her the chance to step outside having to be the good mother and the good daughter and the good wife and just be me’ (175F).”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    Participants described a lack of professionals' understanding of autism, which contributed to barriers in accessing appropriate treatment and support.

    “Participants also described a lack of professionals’ understanding of autism, which contributed to barriers in accessing appropriate treatment and support.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingreasoning

    Participants described how difficulties characteristic of autism led to challenges in recognising they needed help and successfully requesting help.

    “Participants described how these difficulties led to challenges in recognising they needed help and successfully requesting help.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    The majority of participants reported needing support with mental health, mentoring and social activities, but under half actually received this support.

    “The majority of participants reported needing support with mental health, mentoring and social activities, but under half actually received this support.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Many participants described how appropriate tailored support and treatment empowered them, gave them autonomy, facilitated their inclusion in social networks and wider society and gave them hope for a future where suicide was no longer an option.

    “In contrast, many participants described how appropriate tailored support and treatment empowered them, gave them autonomy, facilitated their inclusion in social networks and wider society and gave them hope for a future where suicide was no longer an option.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Participants in this study described that it took much longer to establish a rapport with their therapist or support worker, but there were too few sessions, which caused much anxiety when they came to an end.

    “Participants in this study described that it took much longer to establish a rapport with their therapist or support worker, but there were too few sessions, which caused much anxiety when they came to an end.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Premisecitation

    Autistic adults are at high risk of co-occurring mental health conditions, non-suicidal self-injury, and suicidality.

    “Autistic people are at high risk of mental health problems, self-injury and suicidality.”
    Quote in the paperSubstantial claim0 of 3 sources checked
    • cites Lever and Geurts, 2016

      Not checked in the free run.

    • cites Wigham et al., 2017

      Not checked in the free run.

    • cites Maddox et al., 2017

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    Mental health, self-injury and suicidality in autism are poorly understood and under-researched.

    “However, mental health, self-injury and suicidality in autism are poorly understood and under-researched”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites Cassidy and Rodgers, 2017

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    Autistic adults without intellectual disability are at highest risk of contemplating suicide (66%) and dying by suicide.

    “autistic adults without intellectual disability (ID) are at highest risk of contemplating suicide (66%, Cassidy et al., 2014a), and dying by suicide (Hirvikoski et al., 2016)”
    Quote in the paperSubstantial claim0 of 2 sources checked
    • cites Cassidy et al., 2014a

      Not checked in the free run.

    • cites Hirvikoski et al., 2016

      Not checked in the free run.

  • Classified as probably not a substantial claim.

    Premisecitation

    A participatory approach is advocated in research.

    “so a participatory approach is advocated in research”
    Quote in the paperSubstantial claim0 of 2 sources checked
    • cites Fletcher-Watson et al., 2018

      Not checked in the free run.

    • cites Pellicano et al., 2014

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    Online surveys provide privacy and anonymity, extending the potential reach further when the research question is sensitive.

    “These benefits are magnified when the research question is sensitive, as online surveys provide privacy and anonymity, extending the potential reach further”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites Braun et al., 2013

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S2 (checkable).

    Interpretationown data

    There is an urgent need for autism treatment pathways in mental health services.

    “Findings demonstrate an urgent need for autism treatment pathways in mental health services.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Premisecitation

    Mental health professionals and psychiatrists are generally not trained in recognising and understanding ASC, meaning services are unprepared to adapt support and treatment to this group.

    “mental health professionals and psychiatrists are generally not trained in recognising and understanding ASC, meaning services are unprepared to adapt support and treatment to this group”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites Raja, 2014

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Study design and conductnone given

    Themes were discussed with S.C. and L.B., who offered feedback and helped refine themes to ensure interpretation of the data was valid.

    “L.C.-C. discussed themes with S.C. and L.B., who offered feedback and helped refine themes to ensure interpretation of the data was valid.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Study design and conductreasoning

    Thematic analysis was carried out by a researcher not involved in the steering group discussions to avoid unnecessary bias.

    “Analysis was carried out by L.C.-C., who was not involved in the steering group discussions facilitated by S.C., L.B. and R.S., to avoid unnecessary bias.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationcitation

    Despite being at significantly increased risk of mental health problems and suicidality than the general population, autistic people appear less likely to be able to access support and treatment for these difficulties.

    “Hence, despite autistic people being at significantly increased risk of mental health problems and suicidality than the general population, they appear to be less likely to be able to access support and treatment for these difficulties.”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    The term 'high-functioning' can underestimate the problems an autistic person can face on a daily basis.

    “A recent study on autism language-use from the perspective of the UK autism community, found the term ‘high-functioning’ can underestimate the problems an autistic person can face on a daily basis (Kenny et al., 2016).”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites Kenny et al., 2016

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Premisecitation

    Autonomy and a sense of belonging are important in the general population.

    “Little is currently known about well-being in autism (Robeyns, 2016), but autonomy and a sense of belonging could be particularly important (Milton and Sims, 2016), similar to the general population (Pelton and Cassidy, 2017; Van Orden et al., 2010).”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites Pelton and Cassidy, 2017

      Not checked in the free run.

    • cites Van Orden et al., 2010

      Not checked in the free run.

  • May combine two claims.

    Study design and conductreasoning

    Respondents to the survey were autistic adults who were able to respond independently to an online survey, and therefore results are not generalisable to those with co-occurring intellectual disability.

    “However, respondents to the survey were autistic adults who were able to respond independently to an online survey, and therefore results are not generalisable to those with co-occurring intellectual disability.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Study design and conductreasoning

    The lack of distinction between treatment and support in this study, owing to participants using the terms interchangeably, may have reduced the ability to make specific targeted improvements.

    “The lack of distinction between treatment and support in this study, owing to participants using the terms interchangeably, may have reduced the ability to make specific targeted improvements.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Study design and conductnone given

    A key strength was the participatory approach used in the research, which ensured questions were important, relevant and clear to autistic people.

    “A key strength was the participatory approach used in the research, which ensured questions were important, relevant and clear to autistic people.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Study design and conductown data

    The mean age of autism diagnosis was very broad (ranging from 2 to 59 years) and this study did not consider whether delayed diagnosis impacted the experiences of treatment and support.

    “The mean age of autism diagnosis was very broad (ranging from 2 to 59 years) and this study did not consider whether delayed diagnosis impacted the experiences of treatment and support.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing). May combine two claims.

    Interpretationreasoning

    Results from this study are consistent with these results and provide greater detail regarding enablers for autistic accessing services.

    “Results from this study are consistent with these results and provide greater detail regarding enablers for autistic accessing services.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationown data

    The participants' experiences show that it is not only possible, but highly beneficial, to support autistic people and treat mental health problems and suicidality in this group.

    “The participants’ experiences show that this is not only possible, but highly beneficial.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Study design and conductreasoning

    A majority of participants had experienced mental health treatment and may have responded to the survey as they felt it was important, and many therefore not be representative of those who did not respond.

    “A majority of participants had also experienced mental health treatment and may have responded to the survey as they felt it was important, and many therefore not be representative of those who did not respond.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Premisecitation

    There is a lack of research, validated assessments and treatment approaches for mental health and suicidality in autistic adults.

    “Yet there is a lack of research, validated assessments and treatment approaches for mental health and suicidality in autistic adults (Cassidy and Rodgers, 2017) and knowledge of autism and mental health among professionals (Raja, 2014).”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites Cassidy and Rodgers, 2017

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Study design and conductown data

    A majority of the sample comprised autistic women, opposite to the gender bias in the wider autistic population.

    “A majority of the sample comprised autistic women, opposite to the gender bias in the wider autistic population.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S4 (based).

    Premisenone given

    This study is the first to explore autistic adults' experiences of treatment and support for mental health problems and suicidality.

    “This study is the first to explore autistic adults’ experiences of treatment and support for mental health problems and suicidality.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S4 (based). May combine two claims.

    Study design and conductnone given

    The online recruitment method meant we were able to capture a large sample, and wide range and depth of experiences compared to interviews or focus groups, which are also less accessible to autistic people.

    “The online recruitment method meant we were able to capture a large sample, and wide range and depth of experiences compared to interviews or focus groups, which are also less accessible to autistic people.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Study design and conductcitation

    Diagnoses were all self-reported, however, previous research has shown good agreement between self- and clinician report.

    “Diagnoses were all self-reported, however, previous research has shown good agreement between self- and clinician report (Daniels et al., 2011).”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites Daniels et al., 2011

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    Mental health forms a key part of well-being.

    “Participants also described how their experiences of treatment and support impacted their well-being, of which mental health forms a key part (Burgess and Gutstein, 2007).”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites Burgess and Gutstein, 2007

      Not checked in the free run.

  • May combine two claims.

    Interpretationcitation

    These results are consistent with previous research and clinical reports of lack of autism expertise in mental health and psychiatric settings and no autism mental health pathway.

    “These results are consistent with previous research and clinical reports of lack of autism expertise in mental health and psychiatric settings (Raja, 2014) and no autism mental health pathway (Crane et al., 2018).”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites Raja, 2014

      Not checked in the free run.

    • cites Crane et al., 2018

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    Given difficulties with communication, flexible thinking and adapting behaviour in many autistic people, psychological therapy is effective but takes longer and thus requires a higher number of sessions.

    “Given difficulties with communication, flexible thinking and adapting behaviour in many autistic people, psychological therapy is effective but takes longer and thus requires a higher number of sessions (Anderberg et al. 2017).”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites Anderberg et al. 2017

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Study design and conductown data

    Given the size of the dataset, it was only possible to display a snapshot of the main themes.

    “Given the size of the dataset, it was only possible to display a snapshot of the main themes.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationreasoning

    Results from this study are consistent with these findings, and suggest that appropriate support could improve autistic adults' well-being, of which autonomy and belonging are a crucial part.

    “Results from this study are consistent with these findings, and suggest that appropriate support could improve autistic adults’ well-being, of which autonomy and belonging are a crucial part.”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    Little is currently known about well-being in autism.

    “Little is currently known about well-being in autism (Robeyns, 2016), but autonomy and a sense of belonging could be particularly important (Milton and Sims, 2016), similar to the general population (Pelton and Cassidy, 2017; Van Orden et al., 2010).”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites Robeyns, 2016

      Not checked in the free run.

59 of 59

  • The paper relies on this without support.

    No studies have explored autistic people's experiences of treatment and support for mental health problems, self-injury and suicidality.

    “However, no studies have explored autistic peoples’ experiences of treatment and support for these difficulties.”

  • The paper relies on this without support.

    Little is known about autistic adults' experiences of receiving treatment and support for mental health problems, self-injury and suicidality, with a majority of studies being quantitative.

    “Little is known about autistic adults’ experiences of receiving treatment and support for mental health problems, self-injury and suicidality, with a majority of studies being quantitative.”

  • The paper relies on this without support.

    When similar experiences are reported, it provides compelling evidence for a shared understanding of the issues being explored.

    “When similar experiences are reported, it provides compelling evidence for a shared understanding of the issues being explored.”
3 of 3

Claims other papers make about this one

Each is checked against this paper’s own text: does it say what the citing paper says it does?

Self-check

Percentages, sums and reported differences re-computed from the paper’s own numbers.

  • Autism/classic autism/ASC women's percentage does not match its count

    Minor

    The table reports 11 of 121 women as 18.3%, but that count is approximately 9.1%.

    Reported 18.3 · recomputed 9.090909

  • Mentoring percentage for women does not match the stated count

    Minor

    Table 3 lists 101 women who would ideally like mentoring out of 101 women answering that question, yet reports 67.3% rather than 100%.

    Reported 67.3 · recomputed 100

  • AS/HFA total percentage does not match its count

    Minor

    The table reports 165 of 198 participants as 78.7%, but that count is 83.3%.

    Reported 78.7 · recomputed 83.333333

  • PDD/PDD-NOS women's percentage does not match its count

    Minor

    The table reports one of 121 women as 14.2%, but that count is approximately 0.8%.

    Reported 14.2 · recomputed 0.826446

  • PDD/PDD-NOS total percentage does not match its count

    Minor

    The table reports one of 198 participants as 12.7%, but that count is approximately 0.5%.

    Reported 12.7 · recomputed 0.505051

  • Zero men with PDD/PDD-NOS are assigned a nonzero percentage

    Minor

    The table reports zero of 77 men as 10.4%; zero of 77 is 0%.

    Reported 10.4 · recomputed 0

  • AS/HFA women's percentage does not match its count

    Minor

    The table reports 104 of 121 women as 80.8%, but that count is approximately 86.0%.

    Reported 80.8 · recomputed 85.950413

  • Autism/classic autism/ASC total percentage does not match its count

    Minor

    The table reports 20 of 198 participants as 16.8%, but that count is approximately 10.1%.

    Reported 16.8 · recomputed 10.10101

8 of 8

Cites

Flagged first, then by citations

Research works printed but not linked: 3

  1. Hedley D, Uljarević M (2018) Systematic review of suicide in autism spectrum disorder: current trends and implications. Current Developmental Disorders Reports 1: 12.
  2. Milton D, Bracher M (2013) Autistics speak but are they heard? Medical Sociology Online 7: 61–69.
  3. Robson C (1993) Real World Research: A Resource for Social Scientists and Practitioners-researchers. Mallden, MA: Blackwell Publishers.

Cited by

Sorted by citations

Related

Authors
Camm-Crosbie, L., Bradley, L., Shaw, R., Baron-Cohen, S., & Cassidy, S.
Affiliations
  • Coventry University (GB)
  • Coventry and Warwickshire Partnership NHS Trust (GB)
  • University of Cambridge, UK
  • University of Nottingham (GB)
Corresponding author
Cassidy, Sarah
ORCID
Venue
Autism
Publisher
SAGE Publications
Published
2018-11-29
Volume
23
Issue
6
Pages
1431-1441
ISSN
  • 1362-3613 (ISSN-L)
  • 1461-7005
DOI
10.1177/1362361318816053
PMC
PMC6625034
OpenAlex
W2902777586
Semantic Scholar
c78ac9184bbe3ee6cd4d7890322a46658be3d3cb
Cited by
415
References
45
Citations by year
2026: 62 · 2025: 79 · 2024: 71 · 2023: 53 · 2022: 69 · 2021: 46 · 2020: 26 · 2019: 8
FWCI
11.89
Type
journal article
Language
en
Open access
Licence
Locations
  • Autism (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • Repository@Nottingham (University of Nottingham) (publishedVersion, other-oa)
  • Repository@Nottingham (University of Nottingham) (submittedVersion, cc-by)
  • Pure (Coventry University) (submittedVersion, cc-by)
  • University of Bedfordshire Repository (University of Bedfordshire) (submittedVersion, cc-by-nc-nd)
  • Apollo (University of Cambridge) (submittedVersion, cc-by)
  • Apollo (cc-by)
Funders
Economic and Social Research Council (ES/N000501/2)
Topics
  • Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
  • Social Sciences › Psychology › Clinical Psychology › Suicide and Self-Harm Studies
  • Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
Keywords
autistic adults, mental illness, self-harm, suicidality, treatment access, mental health support, tailored treatment, well-being, suicide risk, lived experience
MeSH terms
Adolescent, Adult, Aged, Autistic Disorder, Mental Disorders, Female, Health Services Accessibility, Humans, Male, Middle Aged, Surveys and Questionnaires, Self-Injurious Behavior, Young Adult, Suicidal Ideation

About these checks

Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.

Claims read by deepseek-v4.1-flash under definition version 3 (extract-v3) on 2026-10-08.

Classified by jev-1.13-20260917 (gold-guideline-v0.2) on 2026-10-08.

Statistics and arithmetic are recomputed, not judged.

Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.

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