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Restricted accessEditorialFirst published February, 2025pp. 275-283
, Anne Lindblom, Jon-Are Masternes , [...]
Open accessReview articleFirst published February, 2025pp. 284-309Autism diagnoses in adulthood have risen substantially over recent years. While providing potential benefits, many autistic adults struggle to navigate their new diagnosis. Our review aimed to synthesise the evidence for post-diagnostic support for autistic adults without intellectual disability diagnosed in adulthood in the UK: investigating availability, efficacy, and autistic adults’ experiences. A systematic search of four biomedical and three grey literature databases was conducted to identify UK-based studies published since 2012. A total of 27,581 records were screened in duplicate, with 19 studies regarding post-diagnostic support included. A narrative synthesis was undertaken due to anticipated heterogeneity. A service mapping exercise also provided a summary of post-diagnostic service provision currently available across the UK. Findings indicate that many services across the UK provide information and signposting as their primary form of post-diagnostic support, whereas autistic adults desire low-level support services, psychoeducation, and peer support. Evidence regarding the efficacy of post-diagnostic support was unavailable. This review highlights the need for adequate support to alleviate post-diagnostic challenges and improve autistic adults’ quality of life. Low-level support services, psychoeducation, and peer support appear acceptable and feasible, with a preference often indicated for autistic-led support. Future research should develop manualised post-diagnostic support programmes and assess their efficacy.
More adults than ever before are seeking an autism diagnosis in adulthood. While receiving a diagnosis may be beneficial, many autistic people struggle to navigate their new diagnosis, and require support. This study conducted a systematic review of previous research on the support available after diagnosis (post-diagnostic support) for autistic adults without intellectual disability who were diagnosed in adulthood in the UK. A systematic review is a pre-planned method of searching for all relevant studies, before combining these to answer a larger question. The study aimed to investigate the availability of such support and its effectiveness, and to explore autistic adults’ experiences of accessing support. We also used publicly available information to create a map of the post-diagnostic support services currently available across the UK. A systematic search of seven databases was conducted, to identify UK-based studies published after 2012. Nineteen studies were eligible to be included in the study. Although some form of post-diagnostic support is available across most areas in the UK, this mostly consists of providing information and ‘signposting’ the person to other services. These options may not meet the needs of autistic people, who want services such as psychoeducation (therapy whereby an individual receives education about their diagnosis to improve understanding and self-management), and peer support. Findings highlight the need for adequate support to alleviate the post-diagnostic challenges autistic adults face. The study could not evaluate the effectiveness of support options in the UK due to a lack of information about this in published research. Research shows that autistic adults would like low-level support services, psychoeducation, and peer support, and may also prefer autistic-led support. Further research is required to develop and evaluate post-diagnostic support programmes which include these elements.
Open accessReview articleFirst published February, 2025pp. 310-328The International Classification of Functioning, Disability, and Health is a biopsychosocial framework of health-related functioning designed to provide a unifying system for health care, social services, education, and policy sectors. Since its publication in 2001, the International Classification of Functioning has been used to guide clinical practice and research in autism and attention-deficit hyperactivity disorder. More recently, to promote its practical application, shorter versions of the International Classification of Functioning, known as Core Sets, have been developed for autism and attention-deficit hyperactivity disorder. This scoping review explored the application of the International Classification of Functioning and the International Classification of Functioning Core Sets in autism and attention-deficit hyperactivity disorder. Electronic database searches were conducted, resulting in 78 studies meeting the inclusion criteria. The results demonstrate a wide-ranging application of the International Classification of Functioning using different methods across various contexts. However, the majority of the research conducted focused on autism and primarily involved children. The review highlights that although the research implemented the International Classification of Functioning, it did not necessarily align with the underlying philosophy of the International Classification of Functioning framework, as the impact of the medical perspective still seems to influence research methodologies and interpretation. Nonetheless, the International Classification of Functioning presents opportunities to facilitate a shift from a strictly medical viewpoint on neurodevelopmental conditions to more comprehensive approaches.
The International Classification of Functioning, Disability, and Health (ICF) is a framework designed by the World Health Organization (WHO) to help different sectors, such as healthcare, social services, education, and policy, understand how people with health-related issues function (do the things they want to and need to do) in their daily lives. This framework has also been used to guide clinical practice and research in autism and attention-deficit hyperactivity disorder (ADHD). To make it more practical, shorter versions of the ICF called Core Sets have been developed. We wanted to explore how the ICF and the ICF Core Sets have been used in research relating to autism and ADHD. We looked at the research that had been previously published on this topic by conducting a systematic search and review. Seventy-eight studies meeting our criteria were included in our review. Results show that the ICF has been applied in many ways across various contexts. However, most of the research has focused on autism, mainly involving children. The review highlights that although the ICF was used in some studies, the underlying philosophies of the framework were not always followed. The medical perspective still influenced the way research was done and interpreted. Nevertheless, using the ICF in the right way can help shift research on neurodevelopmental conditions like autism and ADHD toward a more holistic approach, moving away from solely focusing on medical aspects.
Open accessReview articleFirst published February, 2025pp. 329-343There is increasing interest in the use of games to scaffold social skills training for autistic children and youth. However, there is no consensus on how to best approach their design, so that learning opportunities are maximised. This article presents a systematic scoping review of empirical studies that use games as social skills training for autistic children and youth. We set out to describe the different types of game-based interventions observed, to identify those that typically bring successful outcomes (while noting the social skills targeted in each), and to highlight the psychological intervention approach taken. Through a search of five databases, 3070 studies were identified and reduced, through screening, to a sample of 17 studies. Each study reported that their game successfully promoted social skills training for autistic people. Although not a part of the criteria, all studies included a technological element. However, across the sample, there was also a lack of specificity in how ‘social skills’ were defined and in which skills were chosen as the focus of the intervention. Moving forward, we recommend a more theoretically driven approach to defining behavioral targets for game-based interventions, as well as the inclusion of autistic voices earlier and more centrally in the design processes.
There is growing interest in using games to help autistic children and youth learn social skills. However, there is no clear agreement on the best way to design these games to ensure they are most effective. In our research, we reviewed studies that used games to teach social skills to autistic children and youth. We aimed to describe the different types of games, identify which ones were most successful and understand the psychological methods used. We searched five databases and found 3070 studies, which we narrowed down to 17 that met our criteria. Each of these 17 studies reported that their game helped improve social skills in autistic children. Interestingly, all these studies used some form of technology, even though this was not a requirement. However, we noticed that many studies were not clear on what specific social skills they were targeting or how they defined ‘social skills’. For future work, we suggest that game-based interventions should be more clearly based on established theories. In addition, it is important to involve autistic people in the design of these games to ensure they meet their needs effectively.
Restricted accessResearch articleFirst published February, 2025pp. 344-354This study evaluated the comorbidity rates of autism spectrum disorder (ASD) with functional neurological disorders (FNDs). A systematic review was conducted in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A subset of data was suitable for meta-analysis of proportions. Studies which assessed either the prevalence of ASD in patients with FNDs, or the prevalence of FNDs in patients with ASD were considered. Critical appraisal was conducted using Joanna Briggs Institute Critical Appraisal Tools. Fourteen studies met the inclusion criteria. Three cross-sectional studies which reported the comorbidity of ASD among children presenting with functional seizures met inclusion for meta-analysis. The pooled comorbidity rate of ASD in this group was 10.26% [3.92, 18.95], with an
Autism spectrum disorder (ASD) and functional neurological disorders (FND) are relatively common conditions, and there has been recent interest in the overlap between them. Both conditions share core features of alexithymia, impaired interoception and deficits in attentional focus. To date, relatively little is known about the comorbidity rates between ASD and FND. This is the first meta-analysis and qualitative synthesis on the subject. We found that around 10% of children presenting with functional seizures have a comorbid ASD diagnosis. People with ASD are more likely than the neurotypical population to have functional somatic disorders, and there is also evidence that ASD rates are higher for other FNDs such as functional motor disorders. Since FND comes with risks of unnecessary medical procedures and investigations, it is important to recognize the potential for people with ASD to have an FND comorbidity.
Open accessResearch articleFirst published February, 2025pp. 355-366Autism has been linked to difficulties within the social domain and quick decision-making. The Dual Process Theory of Autism proposes that autistic people, compared to non-autistic people, tend to prefer and perform in a more deliberative and less intuitive reasoning style, suggesting enhanced rationality in autism. However, this theory has not been systematically explored across social and non-social domains. In total, 24 autistic adults and 24 age-, gender- and non-verbal cognitive ability–matched non-autistic counterparts completed subjective and objective measures of reasoning. A scenario-based comparison task was employed, covering both social and non-social domains, to assess whether participants consistently used the same strategy across domains or alternated between strategies for their forced-choice judgements. On a subjective measure of reasoning, compared to their counterparts, autistic participants self-reported lower intuition. However, there was an opposite pattern on an objective measure, in that autistic participants responded more intuitively. No significant group differences were identified between autistic and non-autistic participants on self-reported deliberation, objectively measured reflectiveness or forced-choice moral judgements across social and non-social domains. There might be a discrepancy among autistic people for their subjective preferences and objective performances in reasoning, decision-making and judgements.
Autistic people often experience challenges in social contexts, and when decisions need to be made quickly. There is evidence showing that autistic people have a tendency for greater deliberation and lower intuition, compared to non-autistic people. This has led to the researchers’ proposal that autism is associated with an enhanced level of rationality. However, these theories have been mostly explored through the lens of either only non-social domain or only social domain. To address this gap, we recruited autistic adults and carefully matched them with non-autistic adults for comparison. We used a task representing both social and non-social interactions in a comparison structure and asked participants’ moral judgements on scenarios’ main characters. This was complemented by subjective and objective measures of reasoning. Our findings did not reveal meaningful differences between groups in terms of deliberation. However, we did observe that autistic participants self-reported lower levels of intuition, compared to non-autistic participants. Autistic people consistently rate themselves as less intuitive than their counterparts. Nevertheless, objective evidence supporting this across tasks and studies is inconsistent.
Open accessResearch articleFirst published February, 2025pp. 367-381Caregivers can experience significant challenges following their child’s autism diagnosis and often seek informational, relational and emotional support. Post-diagnostic support for caregivers has received relatively little research attention and represents a significant gap in the international evidence base. We used an iterative codesign process to develop a manualised group-based post-diagnostic programme, Empower-Autism, with associated theory of change, to address the diverse needs of caregivers and improve caregiver mental health. Empower-Autism blended evidence-informed autism psychoeducation with psychotherapeutic components grounded in Acceptance and Commitment Therapy. Three feasibility groups (two in-person and one online) were delivered with 29 clinically referred, socioeconomically diverse caregivers. We evaluated feasibility and acceptability through quantitative attendance and satisfaction data, and thematic analysis of detailed interviews with 17 participants and 5 facilitators. Attendance was satisfactory (76% participants meeting prespecified criteria) and programme satisfaction was good. Qualitative analysis suggested the programme was acceptable and accessible, and highlighted the areas for improvement. Caregivers described perceived benefits from the programme, including improved wellbeing, social connection, autism positivity and more attuned parenting. Empower-Autism is being evaluated within a large randomised controlled trial and, if shown to be clinically and cost-effective, this programme will fill an identified evidence gap in the United Kingdom and global provision.
Parents and carers face many challenges following their child’s autism diagnosis. They often look for information, and social and emotional support. There has been relatively little research into how best to provide this support and this means that there is no evidence to guide the delivery of services. Studies have suggested that an approach called Acceptance and Commitment Therapy can help parents and carers with their adjustment and emotional wellbeing.
This article describes the development of a new group-based programme to address the diverse needs of caregivers after their child’s autism diagnosis. The new programme was developed with caregivers, autistic people and professionals. It was called Empower-Autism and contained lots of information about autism and strategies to support autistic children, alongside therapeutic aspects based on Acceptance and Commitment Therapy. The programme was delivered to 29 parents/carers in three groups. Attendance at the groups was satisfactory. Both parents/carers and facilitators liked and valued the programme and found it accessible. They made suggestions for improvements. After the programme, parents and carers described improved wellbeing. They felt more positive and more connected to other people. They also described parenting their child in a more informed and sensitive way.
The new programme is being tested within a large clinical trial. If there are positive results, the programme could be recommended for delivery and this would address an important gap in evidence-based practice.
Open accessResearch articleFirst published February, 2025pp. 382-394Tabletop role-playing games (TTRPGs) are increasingly used in therapeutic and educational settings to improve the well-being of autistic people. This study investigated the potential of TTRPGs to provide a safe space where autistic adults could develop relationships with others while also engaging in character and world-building. Eight autistic adults were split into two groups and taken through a 6-week online Dungeons and Dragons campaign run by one of the researchers. Semi-structured interviews were then conducted to discuss how participants felt interacting in and out of the TTRPG. Several key themes were identified as important aspects of why autistic people could benefit from role-playing environments. The analysis showed that the participants felt a strong level of enjoyment from engaging in tabletop role-playing and, in many ways, experienced better social interactions during the TTRPG. The results suggested that TTRPGs can provide a safe space for autistic adults to engage in meaningful social interactions with like-minded individuals. Role-playing may also allow autistic participants to rewrite their own life stories through their characters’ adventures, leading to improved self-esteem.
Tabletop role-playing games (TTRPGs) are popular hobbies that may offer specific social benefits for autistic people. This study investigated the ability of TTRPGs to provide a safe space where autistic adults could develop relationships with other autistic adults while engaging in character and world-building. A group of eight autistic adults were split into two groups and taken through a short-form online Dungeons and Dragons campaign over 6 weeks run by one of the researchers. The researcher then led a series of individual semi-structured interviews discussing how participants felt interacting in and out of the TTRPG. Several key themes were identified as important aspects of why autistic people could benefit from such an environment. Analysis showed that while real-life interactions could be challenging, in TTRPG play, they felt they experienced significantly fewer struggles. Results suggested that TTRPGs can provide a safe space environment where autistic adults can engage in productive social interactions with like-minded individuals. It also may allow autistic participants to experience ‘bleed’ or the ability to take on a new character that changes the way they feel about themselves outside of the game. Future directions for this work are discussed.
Open accessResearch articleFirst published February, 2025pp. 395-407, Niall Caulfield, Sinéad O’Doherty , [...]The quality of life of autistic children and their parents is impacted by the stress they experience, their coping strategies and the availability of professional health, social and educational support services. Recent changes in the structural organisation of child disability professional supports in Ireland mean that in-depth knowledge about current experiences of parenting autistic children is necessary. This qualitative study explored parents’ perceptions and experiences regarding their challenges, stress levels, coping strategies and professional support services. Semi-structured in-depth interviews were conducted with six parents of autistic children aged 4 to 16 years. Thematic analysis identified three core themes: ‘The Autism Journey: Challenges and Rewards’, ‘Navigating a Flawed Support System’ and ‘The Importance of Social and Professional Supports’. Findings emphasised that parents face endless challenges in caring for autistic children. Dealing with autism-based support services, however, is the greatest stressor experienced by parents. It revealed that the system to access services is experienced as difficult and parents consider it is operating inadequately. This reveals a pressing need to improve systems that provide professional support services to autistic children and their families.
Parenting an autistic child can be a challenging experience. Parents of autistic children often require social and professional support to cope with the various stresses they encounter and to ensure their children achieve their optimal potential. Recently, the way professional supports are organised in Ireland has changed. Very little previous recent research has investigated parents’ experiences of raising an autistic child in Ireland. This study interviewed six parents asking them about their challenges, stress levels, coping strategies and their perceptions regarding professional support services. The data from these interviews were organised into themes. A major finding was that parents felt the healthcare system was failing to provide help for their children, and that support services in Ireland can cause more parental distress than dealing with their child’s difficulties. Other causes of parental stress included the child’s behaviours that they found challenging, stigma, a lack of awareness about autism and isolation. This study shows that both autistic children and their parents are at increased risk of developing mental health problems due to a flawed healthcare system that requires improvement urgently.
Open accessResearch articleFirst published February, 2025pp. 408-423Vocal imitation in English-speaking autistic individuals has been shown to be atypical. Speaking a tone language such as Mandarin facilitates vocal imitation skills among non-autistic individuals, yet no studies have examined whether this effect holds for autistic individuals. To address this question, we compared vocal imitation of speech and song between 33 autistic Mandarin speakers and 30 age-matched non-autistic peers. Participants were recorded while imitating 40 speech and song stimuli with varying pitch and duration patterns. Acoustic analyses showed that autistic participants imitated relative pitch (but not absolute pitch) less accurately than non-autistic participants for speech, whereas for song the two groups performed comparably on both absolute and relative pitch matching. Regarding duration matching, autistic participants imitated relative duration (inter-onset interval between consecutive notes/syllables) less accurately than non-autistic individuals for both speech and song, while their lower performance on absolute duration matching of the notes/syllables was presented only in the song condition. These findings indicate that experience with tone languages does not mitigate the challenges autistic individuals face in imitating speech and song, highlighting the importance of considering the domains and features of investigation and individual differences in cognitive abilities and language backgrounds when examining imitation in autism.
Atypical vocal imitation has been identified in English-speaking autistic individuals, whereas the characteristics of vocal imitation in tone-language-speaking autistic individuals remain unexplored. By comparing speech and song imitation, the present study reveals a unique pattern of atypical vocal imitation across speech and music domains among Mandarin-speaking autistic individuals. The findings suggest that tone language experience does not compensate for difficulties in vocal imitation in autistic individuals and extends our understanding of vocal imitation in autism across different languages.
Open accessResearch articleFirst published February, 2025pp. 424-434, Ailsa RussellAutistic people experience high rates of mental health problems. A tendency towards behavioural repetition in autistic individuals could contribute to repetitive negative thinking, which is a transdiagnostic risk factor for mental health problems. Our research aimed to add to the literature by using transdiagnostic measures of both mental health symptoms and repetitive negative thinking. We explored the relationships between insistence on sameness and depression-anxiety, via the mediating role of repetitive negative thinking, operationalised as rumination and obsessing. Three groups of adults were recruited; autistic clinical cohort participants (
Autistic people are more likely to have mental health problems than non-autistic people. We know that having repetitive and negative thoughts can contribute to multiple mental health problems such as depression and obsessive-compulsive disorder. Autistic people often do the same behaviours repetitively, and they may also have more repetitive thinking styles. This could contribute to higher rates of mental health problems in autistic people. In this research, we wanted to find out if higher rates of repetitive behaviours contributed to depression and anxiety, and whether this relationship was because of repetitive negative thinking. We asked three groups of autistic adults to take part in the research. Sixty-seven
Open accessResearch articleFirst published February, 2025pp. 435-446, Fionnuala LarkinAvailable research suggests autistic mothers experience greater dissatisfaction with maternity care compared to non-autistic mothers. Limited research exists exploring autistic mothers’ experiences of maternity care, and no research to date has considered maternity care professionals’ experiences of delivering care to autistic mothers. This qualitative study aims to explore the experiences of receiving and providing maternity care for autistic mothers. Data were collected using semi-structured interviews with four autistic mothers and four midwives. Data were analysed using Multi-perspectival Interpretative Phenomenological Analysis. Three overarching themes emerged: ‘challenges faced within maternity care, ‘the importance of the caring relationship’, and ‘the challenge of navigating competing demands and priorities’. Findings highlight the unique challenges experienced by autistic mothers during labour and birth, the need for increased autism awareness in midwifery, and further suggest universal changes to the delivery of maternity care which would benefit autistic women.
Autistic mothers may experience unique challenges when accessing maternity care. A better understanding of the experience of autistic mothers and maternity care professionals would help to create opportunities to support better maternity care. In this study, we interviewed autistic mothers and professional midwives, living and working across the United Kingdom and Ireland. In the interviews, the autistic mothers recalled challenges they faced in the hospital settings, difficulties in communicating their needs, and distress when being physically examined. The midwives we interviewed brought their personal experiences of autism (some were autistic themselves, while others had autistic family members) and made efforts to accommodate autistic mothers where possible. This included paying attention to potential sensory issues, trying to establish a relationship with the mothers and communicating what was going on without medical jargon. However, the midwives were limited in their ability to fully attend to the needs of autistic mothers due to time and resource restraints. Both the midwives and autistic mothers felt that midwife-led births were more attentive to the needs of mothers. Based on our findings, we recommend further training and awareness on autism in midwifery and suggest that changes relating to sensory and communication challenges would benefit both autistic and non-autistic. Our study provides important insight into this experience of maternity care from two perspectives and emphasises the need for greater inclusivity in maternity care services.
Restricted accessResearch articleFirst published February, 2025pp. 447-461, Aaron J Fischer, Chathuri R Illapperuma-Wood , [...]A growing body of evidence supports the applicability of reusable menstrual products for non-autistic menstruators; however, only a few studies have investigated menstrual product preferences for young autistic persons with a uterus. With recent research indicating greater menstrual challenges for autistic menstruators, this study aimed to (1) assess the impact of product features on caregivers’ decisions when purchasing menstrual products for their autistic children and (2) discern which menstrual product(s) young autistic menstruators prefer. The authors used a cross-sectional design, developed two MaxDiff surveys, recruited 99 caregiver and youth dyads, and analyzed survey results using hierarchical Bayesian estimation and latent class analysis. Caregivers chose sensory impact as most important when selecting a product for their autistic child, and youth preferred period underwear. Autistic youth and caregivers may consider study results when managing or preparing for menses to reduce anxiety and unnecessary costs. Clinical service providers and companies may utilize this information to better support menstruators’ comfort and confidence with their menstrual care.
There is little research exploring the menstrual product preferences of autistic youth, especially those who recently started their period. Study authors surveyed caregivers’ choice of menstrual products for their autistic children. They provided popular menstrual materials to autistic youth to try, then asked them which product(s) they preferred, did not try, and why they did not try it. Caregivers selected sensory impact as the most important feature they consider when choosing a menstrual product for their child, and youth participants preferred to use period underwear. Therefore, autistic youth may benefit from purchasing and using period underwear, and caregivers, clinicians, and companies should consider the impact of menstrual product features, like sensory sensitivities, on young autistic menstruators and how best to support them.
Open accessResearch articleFirst published February, 2025pp. 462-475, Gregory S Young, Sally OzonoffIdentifying infants at elevated likelihood for autism and other developmental differences in the first year of life remains a significant challenge. This study explored associations between behavioral differences in infancy and developmental outcomes in toddlerhood. We conducted a secondary data analysis of 256 infants with an older autistic sibling followed from 6 to 36 months of age. We defined conceptually driven cutoffs for three behavioral measures collected at 6, 9, and 12 months and examined the utility of these measures, individually and in combination, in predicting 36-month outcome classification (typical development or developmental concerns, including autism). Overall, relatively few infants met multiple measure definitions (range: 5 to 43 infants across ages). However, infants meeting multiple definitions had a higher likelihood of developmental concerns outcomes at all ages. Positive predictive values for meeting all three measure definitions combined ranged from 0.67 [0.22, 0.96] at 6 months to 0.95 [0.75, 1.0] at 12 months. These findings suggest that while majority of infants ultimately classified with developmental concerns do not show significant behavioral differences in the first year, when early differences are present, they have predictive value. Combining behavioral tools may help to improve identification of infants most in need of early supports.
Many families have concerns about their infants’ development in the first year of life. Current screeners cannot tell whether these differences might be related to autism, developmental delays, or likely to resolve on their own. As a result, many families are told to “wait and see.” In this study, we looked at whether combining multiple behavior measures can improve prediction of outcomes in toddlerhood. This could help to provide families with more information about the significance of early behavioral differences. We assessed 256 infants with an older autistic sibling at 6, 9, and 12 months. We created three markers of behavioral differences at these ages. We looked at whether infants who had two or more markers were more likely to be on the autism spectrum or have other developmental differences than to have typically developing outcomes at 36 months. We found that very few infants had more than one marker at any age. However, infants who showed two or more markers were more likely to be on the spectrum or have other developmental differences at 36 months than infants who showed only one marker. These findings suggest that when behavioral differences are present on multiple measures, there is no need to wait and see before referring for services.
Open accessResearch articleFirst published February, 2025pp. 476-489, Pascal Rahlff, Hannah König , [...]Autistic adults frequently show increased physical or mental health conditions and impairments in social, occupational, and other life domains. Accordingly, they often report reduced health-related quality of life. Yet, numerous barriers prevent effective healthcare for autistic adults. To date, the impact of healthcare barriers on health-related quality of life in autism has not been investigated. We, thus, sought to investigate the health-related quality of life of autistic adults without intellectual disability in Germany and analyze previously reported and novel predictors of health-related quality of life including healthcare barriers using multiple linear regression. Within a nationwide online survey, 311 autistic adults completed the Short-Form Health Survey and the Barriers to Healthcare Checklist. Demographic, clinical, and healthcare-related predictors were also assessed. Participants showed below-average mental and significantly reduced physical health-related quality of life compared to a German normative sample. Several independent variables differentially predicted mental and physical health-related quality of life. Healthcare barriers resulted as the only predictor, which explained variations in both domains: the more barriers autistic adults experienced, the lower their mental and physical health-related quality of life. Barriers emerged as the strongest predictor for mental health-related quality of life. Our results raise awareness for the barriers autistic adults experience in getting appropriate healthcare and the possible consequences for the individual. Improved healthcare access might contribute to better health-related quality of life in autism.
Health-related quality of life reflects a person’s perspective on their well-being in physical, mental, social, work-related, and other aspects of health or life. Autistic adults typically report difficulties in many or all of these domains and, thus, often experience their health-related quality of life being reduced. Nonetheless, they do not obtain the professional support they need and report barriers to accessing or receiving appropriate healthcare. We know little about the impact of barriers to healthcare on health-related quality of life in autistic adults. In the present study, 311 autistic adults without intellectual disability in Germany completed an online survey on their current health-related quality of life and the number of barriers to healthcare they experience. In addition, they were asked about their personal and clinical background as well as about the amount of healthcare and support they recently received. We investigated how this information and, particularly, barriers to healthcare explained variations in individual levels of health-related quality of life. We found that barriers to healthcare, compared to most other variables, were a strong predictor of health-related quality of life: The more barriers autistic adults reported, the lower their experienced psychological and physical well-being. To our knowledge, this is the first paper to examine the relationship between barriers to healthcare and health-related quality of life in autism. Our results suggest that healthcare providers need to become aware of the barriers individuals with autism have in seeking and getting healthcare. Improved access to services might contribute to better health-related quality of life in autistic adults.
Open accessResearch articleFirst published February, 2025pp. 490-503Participatory methods are having sweeping effects on research across the globe. To facilitate transparency around these methods,
There has been a growing push for the Autistic and autism communities to be more actively involved in autism research. From January 2021, the journal
Open accessResearch articleFirst published February, 2025pp. 504-517An increasing number of studies are investigating the links between autism and borderline personality disorder. Studies report overlapping differences and the challenges in differentiating between these two diagnostic labels. In practice, there are many people, especially autistic women, who feel that they were misdiagnosed with borderline personality disorder. This study aimed to explore the experiences of autistic adults who were previously diagnosed with borderline personality disorder. This is an interpretive phenomenological study. Data were collected using one-to-one, semi-structured interviews. Interview audio-recordings were transcribed and analysed using an interpretive phenomenological analysis. Ten people participated. All recalled autistic differences since childhood that went unnoticed. In most cases, borderline personality disorder was felt to have been a misdiagnosis. This misdiagnosis carried stigma, introduced diagnostic overshadowing and led to harmful experiences for our participants. While they did not identify with the diagnosis, they felt powerless to challenge it. In contrast, receiving an autism diagnosis was ‘life changing’. While this did not solve everything for them, it was deeply validating. It also allowed them to be their true authentic selves, shifting the focus away from ‘treatment’ and changing who they are to suit others, towards acceptance of their differences and neurotype. This significantly improved their mental health.
Autistic people face many barriers to receiving an autism diagnosis. Often, they may be misdiagnosed with borderline personality disorder instead. For our study, we interviewed 10 autistic adults who had previously been diagnosed with borderline personality disorder. This helped us to better understand their experiences. They explained how borderline personality disorder is quite stigmatised and may suggest that people are to blame for their differences in behaviour. They found the treatments they had to try for borderline personality disorder to be harmful. For example, these treatments promoted ‘masking’. Previous research showed that masking can be harmful for autistic people, linking it to risk of suicide. This diagnosis also led to healthcare professionals neglecting them and discounting their beliefs. Once they were diagnosed with borderline personality disorder, it was hard to access an autism assessment. When they did receive their autism diagnoses, this was much more positive. This diagnosis was validating. It also improved their mental health, as they were no longer expected to mask – their differences were now accepted. They still felt that autism was stigmatised in society. However, this was very different to the stigma around borderline personality disorder. They felt autism stigma was more about their competence as people, whereas borderline personality disorder stigma was about how they were broken and might be harmful to others. This study is important because it allows their stories to be heard by researchers and healthcare professionals alike. Adding their voices helps to humanise them, promoting positive change in mental health services. More research is now needed.
Open accessResearch articleFirst published February, 2025pp. 518-535 , [...]Shared family meals are associated with family functioning and thought to protect against disordered eating in families with neurotypical children. Limited research, however, has examined the mealtime structure or experience in families with children with autism (Autism spectrum condition) and/or attention deficit hyperactivity disorder, despite eating behaviour differences in these populations. This study sought to compare children’s eating behaviours and caregivers’ mealtime experiences between families with neurotypical children and those with Autism spectrum condition, attention deficit hyperactivity disorder and dual diagnosis (Autism spectrum condition + attention deficit hyperactivity disorder). Think-Aloud methods established validity for the Children’s Eating Behaviour Questionnaire, Meals in our Household and Perceived Stress Scale measures (
Children with neurodevelopmental conditions like autism and attention deficit hyperactivity disorder may experience eating difficulties and related health issues later in life. Sharing family meals can help prevent these issues developing, but most studies have looked at families with neurotypical children. Our goal was to learn more about how families of children with autism, attention deficit hyperactivity disorder and both conditions (autism + attention deficit hyperactivity disorder) experience mealtimes. We developed an online survey asking caregivers about their child’s eating, mealtime experience and if they experienced stress. We tested it with nine caregivers and made improvements based on their feedback before recruiting 351 caregivers to complete the main survey. We found that families of children with neurodevelopmental conditions experienced greater food fussiness, emotional undereating, ‘problematic’ child mealtime behaviours, dietary concerns, higher stress for caregivers and spouses and less frequent conventionally structured mealtimes compared to those without these conditions. Families of children with attention deficit hyperactivity disorder and autism + attention deficit hyperactivity disorder reported greater appetite, ‘problematic’ mealtime behaviours and increased stress for caregivers and spouses compared to families of children with autism. Meanwhile, families of children with autism and autism + attention deficit hyperactivity disorder reported less enjoyment of food and less structured mealtimes compared to those with attention deficit hyperactivity disorder. Our findings highlight that families of children with neurodevelopmental conditions, particularly those with autism + attention deficit hyperactivity disorder, have different mealtime experiences and eating behaviours compared to those with neurotypical children. These families may benefit from support at mealtimes. Learning why people do or do not participate in shared family meals will be crucial to developing improved mealtime support in the future.
Open accessResearch articleFirst published February, 2025pp. 536-543, Robert Balogh, Hannah Chung , [...]Recognizing higher rates of co-occurring health conditions in autistic adults and the frequent use of hospital-based health care services, this study compared rates of repeat emergency visits, repeat hospitalizations, and delayed discharges in autistic adults to other adults with and without developmental disabilities matched for age and sex, living in Ontario, Canada. Returning to the hospital emergency department within a month, being readmitted to hospital within a month and experiencing a delayed discharge from hospital were each more likely to occur in autistic males and females than their counterparts without developmental disabilities, with the risk ratios being the highest for delayed discharges. Males and females with other developmental disabilities were more likely to return to the emergency department within a month than their autistic counterparts, and males with other developmental disabilities were more likely than autistic males to be readmitted to hospital, but the likelihood of delayed discharge in the two groups was similar. These findings suggest that more needs to be done to both improve hospital-based experiences of autistic adults and adults with other developmental disabilities, and to strengthen community-based care to reduce the likelihood of repeat and extended stays in hospital.
We know that autistic people have more health problems and are more likely to go to the emergency department and get hospitalized than other people, but we know less about the problems they have once they get to the hospital. In this study, we looked at all autistic adults in Ontario and compared them to adults who were not autistic and to adults who had other kinds of developmental disabilities to see who came back to the emergency department in the month after an emergency department visit, who got re-hospitalized in the month after being sent home from hospital, and who stayed in the hospital longer than they needed to because there was no place appropriate for them to go to. We found that both autistic males and females were more likely to have these things happen to them than the same age- and sex-matched adults who did not have developmental disabilities. We also found that adults with other kinds of developmental disabilities had similar problems to autistic people. This makes us think that we need to work harder to improve health care for autistic adults and adults with other developmental disabilities when they come to hospital. We also need to make community services work better, and work more closely with hospital services, so that people only come to hospital when they need to and that they can go home when they are ready.
Open accessResearch articleFirst published February, 2025pp. 544-548Meaningful gestures enhance degraded speech comprehension in neurotypical adults, but it is unknown whether this is the case for neurodivergent populations, such as autistic individuals. Previous research demonstrated atypical multisensory and speech-gesture integration in autistic individuals, suggesting that integrating speech and gestures may be more challenging and less beneficial for speech comprehension in adverse listening conditions in comparison to neurotypicals. Conversely, autistic individuals could also benefit from additional cues to comprehend speech in noise, as they encounter difficulties in filtering relevant information from noise. We here investigated whether gestural enhancement of degraded speech comprehension differs for neurotypical (
Our study explored how meaningful hand gestures, alongside spoken words, can help autistic individuals to understand speech, especially when the speech quality is poor, such as when there is a lot of noise around. Previous research has suggested that meaningful hand gestures might be processed differently in autistic individuals, and we therefore expected that these hand gestures might aid them less in understanding speech in adverse listening conditions than for non-autistic people. To this end, we asked participants to watch and listen to videos of a woman uttering a Dutch action verb. In these videos, she either made a meaningful gesture while speaking, or not, and speech was clear, or noisy. The task for participants was to identify the verb in the videos. Contrary to what we expected, we found that both autistic and non-autistic individuals use meaningful information from hand gestures when understanding unclear speech. This means that gestural information can aid in communication, especially when communicative settings are suboptimal.