Purpose This study aims to examine how intervening social factors influence autism spectrum disorder (ASD) diagnosis in Latin American migrant families living in the Netherlands. Focusing on social support, language proficiency and perceptions of discrimination in health care, the authors adopted a socioecological perspective. Design/methodology/approach Using a narrative design guided by content analysis, the authors conducted 13 semistructured qualitative interviews with parents representing several Latin American countries. Findings The findings reveal that these families face considerable challenges accessing diagnostic assessment services for their children, primarily due to language barriers, nationality differences and cultural disparities. These barriers lead to misdiagnosis, delays in care, scrutiny, provider transitions and feelings of abandonment, in line with previous research. Importantly, migration itself is not an inherent risk factor for ASD. Research limitations/implications This qualitative study provides in-depth understanding of parental experiences but is limited in its transferability due to its sample size (13 interviews) and context-specific recruitment. As is common in qualitative research, findings are not intended to be statistically generalizable, but rather to offer analytical insights into processes and meanings within a defined group. Data reflects participants’ self-reported experiences, which are interpreted within their social and cultural context. Despite these considerations, the study generates valuable knowledge on barriers to ASD diagnosis and informs future research and service development. Practical implications The findings highlight the need to strengthen culturally and linguistically responsive pathways for ASD diagnosis in migrant populations. Health-care services should improve access to professional interpreters and culturally competent practitioners to reduce communication barriers and misunderstandings during diagnostic assessments. Training for clinicians on migration-related social determinants of health may help reduce delays, misdiagnosis and fragmented care. In addition, clearer referral pathways and stronger coordination between primary care and specialist services could improve continuity of care. These improvements may support earlier identification of developmental concerns and reduce inequalities in access to ASD diagnostic services among migrant families. Social implications This study highlights how social determinants such as language barriers, cultural differences and perceived discrimination shape access to ASD diagnostic services among Latin American migrant families in the Netherlands. These findings underscore the broader impact of migration on health-care equity and the importance of inclusive public health systems. Addressing these challenges may contribute to reducing social inequalities and improving trust between migrant communities and health-care providers. Greater recognition of cultural diversity in health-care interactions can also support social inclusion and empowerment of migrant families, ensuring that children’s developmental needs are identified and addressed in a timely and equitable manner. Originality/value This study provides original insights into the diagnostic pathways of ASD among Latin American migrant families in the Netherlands, a population that remains underrepresented in the literature. By adopting a qualitative and socioecological perspective, it captures the interplay of language, cultural and structural factors shaping access to diagnosis. The study adds value by highlighting migration-related barriers that are often overlooked in ASD research, particularly in European health-care contexts. Its findings contribute to a more nuanced understanding of inequities in developmental health services and offer evidence to inform culturally responsive policy and practice improvements in early childhood care.
Purpose This study aims to examine how young athletes with autism spectrum disorder (ASD) are represented in media discourse and how parents and coaches perceive these portrayals, with particular attention to framing, inclusion and stereotyping. Design/methodology/approach A mixed-methods design was used, combining a content analysis of 63 media articles on young athletes with ASD with a survey of 442 adult respondents, including 284 parents and 158 coaches. The content analysis examined dominant narrative frames, emotional intensity and narrative complexity, while the survey assessed perceptions of emotional-inspirational framing, realism, inclusion and stereotyping. Findings Media portrayals of young athletes with ASD were more often framed through emotional and inspirational narratives than through performance-oriented and cognitively complex narratives. Higher emotional intensity was associated with lower narrative complexity, and international media were more likely than national media to use inspirational framing. Parents and coaches likewise perceived these portrayals as predominantly emotional and inspirational rather than realistic and performance-oriented. At the same time, they associated them with both greater visibility and social inclusion and the reinforcement of stereotypes and unrealistic expectations. Research limitations/implications The study is limited by a purposive media sample, reliance on self-reported stakeholder perceptions and the use of exploratory and confirmatory analyses on the same survey sample. The findings therefore cannot be generalised without caution. Nevertheless, the study highlights the need for more balanced media representations of autistic young athletes that move beyond simplified inspirational storytelling. Future research should include autistic athletes themselves, examine broader cross-platform media environments, and validate the measurement instrument across independent and culturally diverse samples to strengthen the evidence base on media representation, inclusion, and stereotyping. Practical implications Media professionals, sport organisations and autism inclusion advocates should move beyond simplified inspirational narratives and promote more balanced portrayals of autistic young athletes, including their agency, performance and everyday sporting participation. Social implications This study shows that media visibility can support public awareness and social inclusion while simultaneously reproducing stereotypes and unrealistic expectations. More balanced representations of autistic young athletes may contribute to broader cultural recognition of autism as compatible with competence, participation and belonging, rather than reducing it to inspiration or exceptionality. In this way, the study has wider relevance for media ethics, disability inclusion, and public understanding, because the quality of representation shapes how communities interpret difference, value participation, and respond to autistic children and young people in everyday social contexts. Originality/value This study combines media content analysis with stakeholder perception data and shows that media visibility may simultaneously support inclusion and reproduce reductive portrayals.
Purpose Masking, the suppression of autistic traits to meet neurotypical expectations, is widely reported among autistic women and linked to adverse mental health outcomes. However, less is known about how masking relates to identity development and internal experience. This study aims to examine the question: what internal “voices,” defined as distinct narrative positions, are present in autistic women’s experiences of masking, unmasking and advocacy? Design/methodology/approach In-depth interviews with eight autistic women were analysed using the Listening Guide to identify patterns of relational and emotional positioning across narratives. Findings Three interrelated categories of voices were identified: voices of masking (shame, exhaustion, disconnection), voices of unmasking (self-acceptance, empowerment, connection) and voices of advocacy (resistance, anger and action). These voices co-occurred and were context-dependent rather than sequential. The findings conceptualize masking as a socially embedded survival strategy shaped by gendered and ableist expectations, with unmasking and advocacy emerging as relational responses to safety, recognition and constraint. Originality/value The study advances a neurodiversity-affirming framework that situates autistic identity as dynamically negotiated within structural contexts and highlights implications for reducing environmental demands that necessitate masking.
Purpose Given the paucity of research on neurodiversity within paraphilic populations, this study aims to examine the prevalence of formally diagnosed and self-diagnosed neurodevelopmental conditions and social anxiety disorder in a large community-based sample of individuals identifying as zoophiles. Design/methodology/approach The current study adopts a community-based participatory research action framework to explore the prevalence rates of formal and self-diagnosis of neurodevelopmental disorders in a sample of 2,197 adults identifying as zoophiles. Findings Participant’s ages ranged from 18 to 82 years old (M = 29.39, SD = 9.79), coming from more than 50 countries, notably the United States (43.2%), Germany, Canada and Australia. Results revealed high rates of attention deficit hyperactivity disorder (ADHD) (23.8% and 14.4% formal and self-diagnostics, respectively), autism spectrum disorder (15.7% and 16.2%, respectively) and social anxiety (17.7% and 16.5%). Only a third of participants did not report any neurodevelopmental disorder. Participants reported a wide variation of functional impacts of these disorders with ADHD and social anxiety showing the most uniformed distribution across all levels of support needed. Originality/value To the best of the authors’ knowledge, this community-based participatory research study is the first of this scale to document neurodiversity in this marginalized population. It highlights the importance of understanding the link between neurodevelopmental disorders and zoophilia to adapt interventions.
Purpose Autistic adults navigate transport, housing and recreation daily, yet their first-hand accounts rarely reach the planning processes that shape these domains. This paper aims to examine how autistic adults experience transport, housing and recreation and how the process of involving them in city planning shapes whose voice is heard. It aims to bring autistic adults’ first-hand accounts into planning practice and to contribute evidence on making public participation genuinely inclusive. Design/methodology/approach The study used a qualitative, participatory design with three linked components: a focus group with 19 autistic adults, a design charrette workshop with 10 autistic adults and a campus-based tactical-urbanism field study with 7 autistic adults. The focus group transcript was analyzed using reflexive thematic analysis, organized across the three planning domains. The charrette and field study provided participatory corroboration. Access was mediated by a clinical and community partnership and the analysis attends reflexively to how this shaped data collection. Findings Autistic adults relied heavily on others for mobility, citing a cluster of distinct barriers to independent travel rather than a single cause. Participants framed the built environment as a problem of intelligibility and predictability: unorientable maps, unclear transit information, at least as much as one of sensory overload. Housing was described as conditional, supported by independence rather than full autonomy. Participants valued outdoor recreation and specified concrete design conditions for it while rejecting design features that visibly marked them as different. A planning-led, clinically mediated participatory process was found to reframe participants’ accounts into professional categories, illustrating that including autistic adults does not by itself secure planning with, rather than for, them. Practical implications Planners and policymakers should treat public participation itself as something to be made accessible, using open-ended, participant-led and self-paced formats. Built-environment priorities include legible wayfinding, orienting transit information and continuous pedestrian routes connecting homes to services. Social implications Autistic adults’ needs cut across transport, housing, recreation and services simultaneously; a coordinated, cross-sectoral policy response is required, particularly around the loss of support at the transition to adulthood. Originality/value To the best of the authors’ knowledge, the study is among the first to examine autistic adults’ experiences across transport, housing and recreation together, from their own accounts and from within city planning. Its distinctive contribution is reflexive: an empirical account of how the institutional conditions of participation shape autistic adults’ voice in planning.
Purpose Language, Theory of Mind (ToM) and Executive Functions (EF) are interrelated core cognitive domains that co-develop during early childhood. In samples with Autism Spectrum Disorder (ASD), wide individual differences in language, ToM and EF performances are observed; however, findings regarding how these variables operate within an integrated model, particularly in the 4-6 age range, remain limited. Based on the developmental model of Astington and Jenkins (1999), this study aims to examine the hypothesis that language skills support children's mental state representations (ToM), thereby providing a foundation for EF performance (inhibition and working memory (WM)). Specifically, the operation of the Language (Independent Variable)? ToM (Mediator Variable)? EF (Dependent Variable) model was comparatively tested in children with Typical Development (TD) and those diagnosed with ASD.Design/methodology/approach Forty-four children with TD and 44 children diagnosed with ASD (ages 4-6), matched for non-verbal intelligence scores (Raven et al., 1998), participated in this study designed with a relational survey model. The Mann-Whitney U test was used for intergroup comparisons. Mediation analyses were conducted using Hayes (2018) PROCESS Macro Model 4 (X: General Language Score (G & uuml;ven & Topbas, 2011), M: Verbal False Belief (VFB), Y: EF components [inhibition and WM]). To avoid masking developmental differences, analyses were conducted separately by age levels (ages 4, 5 and 6) and the results were interpreted at an exploratory level.Findings In the analyses conducted by age levels, a statistically significant indirect path through VFB was identified in the relationship between language score and inhibition in the TD group (especially at ages 5 and 6). Conversely, in the ASD group, the indirect path through VFB in the relationship between language score and inhibition was not supported across the examined age cross-sections. Regarding the relationship between language and WM, findings suggested that VFB played a partial mediating role in both groups, particularly at the age 6 level.Originality/value The results suggest that in children with TD, language, ToM and EF components function as an integrated mechanism that nourishes one another, where language strengthens mental representations to support behavioral control (inhibition). In the ASD group, this mechanism appears to operate in a more fragmented manner, with limitations in the transfer of language skills to behavioral control through ToM. These findings should be tested in future research using longitudinal designs where age is a moderator.
Purpose The purpose of this study is to gain a deeper understanding of the diagnostic process of autism spectrum disorders (ASD) in girls from the perspectives of parents and professionals. It seeks to identify factors that facilitate or hinder diagnosis and to describe the role of gender expectations and symptom camouflaging in clinical practice. The broader literature on autistic girls and women is used to contextualise the empirical findings, but the study itself is based on parent and professional accounts rather than direct accounts from autistic girls or women. Design/methodology/approach This study uses a qualitative research design based on nine semi-structured interviews with three parents of girls with ASD, four special educators and two psychologists. Data were analysed using grounded theory procedures, including open, axial and selective coding, to capture the complexity of the diagnostic process. Findings The findings reveal a “systemic invisibility” of autism in girls, resulting from an interplay of individual adaptive strategies (camouflaging), gender-insensitive diagnostic frameworks, the inherent complexity of autism assessment and systemic fragmentation. Results indicate that the inconspicuous nature of difficulties often leads to a diagnostic blind spot, causing delayed diagnoses that may carry significant psychological costs, such as increased anxiety and exhaustion. More specifically, the findings suggest that diagnostic visibility is reduced through the interaction of inconspicuous presentation, compensatory social behaviour, gendered interpretations, variable professional experience and fragmented assessment pathways. Research limitations/implications The study is limited by its small qualitative sample size, specific institutional context and the absence of direct accounts from autistic girls and women. Future research should incorporate the voices of autistic girls and women themselves, include a broader range of clinical and educational settings, and examine how gender intersects with age, intellectual and language profile, socioeconomic position, ethnicity, family resources and school context in shaping diagnostic trajectories. Practical implications The results underscore the need for a gender-sensitive and context-sensitive approach to ASD assessment, while also recognising the genuine complexity of differential diagnosis. Effective diagnosis requires thorough developmental history, interdisciplinary collaboration between families, schools and professionals, careful consideration of symptom overlap with other conditions and systematic accounting for camouflaging strategies. Clinicians should compare behaviour across settings, attend to discrepancies between public coping and post-social exhaustion and avoid relying solely on standardised scores without integrating broader contextual information. Social implications By addressing structural gaps and coordination challenges in current diagnostic practices, this research advocates for more responsive support and improved quality of life for girls who may otherwise be misunderstood or isolated due to delayed diagnosis. The findings also have relevance for understanding the later experiences of women who receive an autism diagnosis in adolescence or adulthood, although women were not directly included as participants in the present study. Originality/value This study contributes to the field by offering an integrated process-oriented model of diagnostic invisibility that brings together individual, relational and service-level factors. It conceptualises late or complicated diagnosis not as an individual failure or as a simple failure of professionals, but as a complex interaction between subtle presentation, compensatory behaviour, diagnostic uncertainty, gendered expectations and fragmented assessment pathways. The study extends existing camouflaging-focused accounts by showing how these factors interact across the diagnostic process to reduce recognition of autism in girls.
Purpose With a growing focus on autism in adulthood, reexamining how and from whom information is collected is critical to ensure autistic adults receive adequate and appropriate care across the lifespan. Accessibility to autism assessments, services for co-occurring mental health conditions, and identifying service needs in adulthood is challenging. Mental health outcomes for autistic adults remain relatively poor compared to nonautistic peers. Increased incorporation of autistic self-report will ensure researchers and clinicians capture the profiles, concerns and needs of autistic individuals from their perspective. However, reliance on a single reporter, regardless of diagnosis or condition, comes with limitations. Using multi-informant approaches provides additional information through examining convergence and discrepancy between informants. Design/methodology/approach This viewpoint paper aims to consider the use of multi-informant approaches, as they pertain to autistic adults through a neurodiversity-affirming framework from the perspective of researchers, clinicians, family members of autistic adults, and autistic self-advocates. Drawing on discrepancy research, adult diagnostic guidelines and clinical expertise, the authors outline considerations for informant selection, contextual interpretation, and ethical management of discrepant reports. Findings The authors highlight adult-specific challenges in applying multi-informant models, including autonomy, masking, relational dynamics, recall limitations, and post-diagnostic disagreement and provide recommendations for selecting informants, interpreting divergence, and communicating assessment decisions transparently. Originality/value Whereas existing guidelines recommend collateral information in adult autism assessment, limited guidance exists on how to systematically interpret discrepancies or manage informant-related complexities in adulthood. This paper extends current guidance by offering perspectives and recommendations for ethically and contextually integrating multi-informant data when working with autistic adults.
Purpose This study aims to compare cognitive functions and narrative speech abilities in Persian-speaking adolescents with autism spectrum disorder (ASD), attention-deficit/hyperactivity disorder (ADHD) and typically developing (TD) peers. It also examined the relationships between these cognitive functions and narrative speech within each group.Design/methodology/approach A cross-sectional comparative design was used with 90 children aged 12-14 years (25 ASD, 25 ADHD, 40 TD). Cognitive assessment included the Stroop task for attention and the Auditory Verbal Learning Test for memory. Narrative speech was evaluated with a standardized Persian test.Findings Significant differences were found in memory recall, narrative speech and memory recognition, but not in attention. The TD group outperformed both clinical groups. The ADHD group performed better than the ASD group in these domains. Attention did not differ between clinical groups. No significant correlations were found between cognitive functions and narrative speech within the clinical groups.Research limitations/implications Findings indicate narrative deficits in ASD and ADHD stem from disorder-specific factors beyond basic cognition, emphasizing the need for tailored, multidimensional assessment and intervention.Originality/value This study contributes to limited Persian research on narrative abilities in neurodevelopmental disorders. It shows distinct cognitive-linguistic profiles in ASD and ADHD, where narrative impairments are not solely due to basic cognitive deficits. The results advocate for personalized intervention approaches based on each disorder's unique profile.
Purpose Positive well-being is often understood as resulting from a combination of individual strengths and physical, social and psychological environmental characteristics. Limited research has explored the impact of environmental factors that promote high levels of well-being from autistic youth perspectives. The current study aims to identify the environmental characteristics that support well-being among autistic youth.Design/methodology/approach The current study used secondary data from a study of therapeutic photography with autistic youth. Participants aged 16-25 (n = 20) captured photos of environments that supported their well-being, reflected on each photo and participated in a qualitative interview. Data were analysed thematically within a social constructionist framework, supplemented by qualitative photo analysis.Findings Seven resulting themes emerged. Thriving is found within environments that enable self-determination, identity affirmation and reflectivity; provide an optimal level of challenge and sensory comfort; and present opportunities to pursue interpersonal connection and personal interests.Originality/value The results of the current study emphasise the importance of adapting environments to the individual preferences and needs of autistic youth to best support their well-being. These findings provide guidance for researchers, caregivers, educators and health service providers to consider how best to facilitate neuro-affirming environmental spaces.
PurposeThis study aims to examine the lived experiences of mothers of children with autism spectrum disorder (ASD) enrolled in mainstream schools in Kosovo and how they navigate the challenges and possibilities of inclusive education.Design/methodology/approachA qualitative phenomenological design was adopted. Semi-structured interviews were conducted with 10 mothers of children aged 8-10 years with formal ASD diagnoses attending mainstream schools implementing inclusion policies. Interviews (45-70 min) were audio-recorded, transcribed verbatim and analyzed using Braun and Clarke's (2006) six-phase thematic analysis.FindingsFive themes emerged: (1) emotional labor and resilience; (2) limited institutional support; (3) advocacy as a daily necessity; (4) hope through teacher collaboration; and (5) the critical role of assistants for students with special educational needs (SEN). Trained, integrated assistants were viewed as essential mediators of participation, learning and emotional regulation. Inclusion frequently depended on sustained maternal advocacy rather than system design, though consistent teacher-parent collaboration noticeably improved experiences.Research limitations/implicationsSmall purposive sample from three municipalities; fathers, teachers, assistants and leaders were not interviewed. Future work should triangulate stakeholders and assess longitudinal outcomes.Practical implicationsProfessionalize assistants for students with SEN (qualification, role clarity and team-based work); embed autism-inclusive pedagogy in teacher development; and formalize two-way family-school communication.Social implicationsReducing hidden emotional and advocacy burdens on families, especially mothers, can enhance equitable participation and community trust in inclusive schooling.Originality/valueBy centering maternal voices in an under-researched low- and middle-income countries /transition context, this study highlights how inclusion can become symbolic without structured supports. It offers practice-ready insights for strengthening assistants for students with SEN provision, teacher preparation and family-school partnerships.
PurposeThis paper aims to examine how processes of developig independence among autistic adults can illuminate broader pathways of personal and community development. What began as research into how autistic adults develop and maintain independence evolved into a profound exploration of community transformation through safety and authentic self-expression. This participatory study emerged from conversations between academic researchers and three autistic men - Harry, Jackson and Jared - who transitioned from struggling students to community leaders at The Jacob's Ladder School.Design/methodology/approachThrough collaborative analysis of their lived experiences, the authors discovered how communities can shift from scarcity-based thinking to abundance-based design, where supporting individuals in bringing their natural, authentic selves enables them to address areas they wish to develop while contributing their unique strengths.FindingsThe findings reveal how communities designed around radical acceptance enable individuals to work on personal growth areas from a foundation of safety and belonging, creating sustainable pathways where behavioral diversity becomes a source of collective wisdom and strength.Originality/valueCentral to this transformation is the Interpersonal Whole-Brain Model of Care (R) (IWBMC (TM)), which recognizes each individual as "a soul ready to be cared for" rather than a collection of deficits requiring correction (O'Dell et al., 2025a, 2025b). The IWBMC (TM)'s emphasis on Spirit & Will - the core identity and driving force for change - creates safety for the authentic self while fostering intrinsic motivation for growth. This strength-based approach contrasts sharply with behaviorist models that focus primarily on correcting observable behaviors without addressing underlying needs or honoring individual processing styles.
PurposeAutistic people and their families sometimes have difficulties that require help from the police, but little is known about their contacts with police. This study aims to examine first contacts from autistic people and their families with the police.Design/methodology/approachIn this study, in one typical city in England, a database that records all calls to the police (over a period of approximately two months) was analysed to examine the extent to which the calls concerned autistic people.FindingsIt was found that 2% (n = 78) of the total of 3,654 calls concerned autistic people and their families. About half of the cases related to autistic children and half to autistic adults, with family members being the most frequent callers to the police. In over a quarter of the cases, the calls concerned missing persons, and in about one sixth, they involved the need for support and a similar number involved disputes (usually within the family). The calls were significantly different from non-autistic calls to the police.Research limitations/implicationsDespite some limitations, for example that the authors were not able to interview the autistic people and their families, these data provide the first snapshot of autistic people's initial contacts with the police.Practical implicationsThere was clearly unmet need in the community for support for autistic people and their families, which the police were doing their best to provide.Social implicationsMore community-based support is needed for autistic people and their families when urgent events occur (such as the autistic person going missing).Originality/valueTo the best of the authors' knowledge, this is the first study to investigate autistic people and their families calls to the police, and it indicates considerable unmet need.
Purpose Research shows that autistic individuals often experience stigma and discrimination in various areas of daily life, which can lead to the internalisation of stigma by concurring with the stereotypes and prejudices attributed to them by society. Discrimination can also manifest through subtle and often unintentional forms of microaggressions (e.g. statements, actions or thoughts). This study aims to explore the experiences of adults with autism from Slovenia – a largely overlooked population – with discrimination, self-stigmatisation and microaggressions. Design/methodology/approach The research was conducted through an online questionnaire completed by 49 adults with an autism diagnosis, incorporating items adapted from established scales measuring discrimination, self-stigma and microaggressions. The collected data were statistically analysed using appropriate non-parametric methods. Findings Preliminary findings suggest that in Slovenia, adults with autism most often experience microaggressions, mainly in the form of minimisation of autism. Participants also reported occasional experiences of discrimination and unfair treatment in personal relationships and in education and work. The most influential factor across experiences of discrimination and microaggressions was the timing of diagnosis, with individuals diagnosed as adults reporting negative experiences more frequently. Overall experiences of self-stigmatisation were less common; however, they were most often reported by those who first recognised signs of autism themselves. Originality/value To the best of the authors' knowledge, this research is the first in Slovenia to examine the experiences of discrimination and self-stigma in the population of adults with autism, and the first overall to study microaggressions in relation to people with autism.
PurposeThis study aimed to investigate special education teachers' familiarity with, perceptions of and recommendations for evidence-based practices (EBPs) and complementary and alternative practices (CAMs) for autistic individuals.Design/methodology/approachA descriptive research design was employed, and data were collected from 100 special education teachers across T & uuml;rkiye through an online survey. The survey measured teachers' familiarity, credibility perceptions and recommendations for EBPs and CAMs. Quantitative data were analyzed using nonparametric tests, while qualitative data were examined through descriptive analysis.FindingsTeachers were significantly more familiar with, found more credible and recommended EBPs more frequently than CAMs. However, some teachers still perceived CAMs as credible and recommended them, despite the lack of scientific support. Familiarity and credibility were highly correlated with teachers' own knowledge and skills. Teachers with graduate-level education rated EBPs and CAMs as more credible compared to those with an undergraduate degree. The most common reasons for recommending practices were perceived effectiveness, knowledge and scientific basis, while nonrecommendation reasons included lack of knowledge and concerns about ineffectiveness.Originality/valueThis study uniquely highlights not only special education teachers' knowledge and perceptions of EBPs and CAMs but also their reasoning processes. The findings emphasize the urgent need for systematic, evidence-focused training to bridge the research-to-practice gap and reduce the dissemination of unsupported practices in special education.
PurposeThis study looked at the impact of socio- demographic factors on the waiting times for children and young people waiting for neurodevelopmental assessments in a region of England. Neurodevelopmental conditions are defined as Autism, ADHD, Foetal Alcohol spectrum disorder, Intellectual disability and Tics/Tourette's 2019. This study aims to consider what influences wait times to manage demand.Design/methodology/approachThis retrospective cohort study was conducted on all Children and Young People (CYP) (aged 0-19) in Cheshire and Merseyside between September 2021 and October 2023. Individual-level data on CYP was captured from routine health-care datasets from NHS Digital Emergency Care Data Sets (ECDS), Secondary Uses Services (SUS) and Mental Health Services Data Set (MHSDS). All data was processed in R (version 3.6.1) for statistical analysis. The relationship between referrals to mental health services, patient demographics and variables (as described above) was evaluated to determine potential risk factors on wait times and additional mental health planned and unplanned events.FindingsGirls were found to be referred at a later age for neurodevelopmental assessmentcompared to boys. Those living in a less deprived area and being refeered to a neurodevelopmental team (rather than an autism team) were significantly associated with a shorter waiting time to assessment. Being referred by Local Authority and Public Health Services was found to be associated with being less likely to be seen within 91 days. Of interest is the finding that a higher number of A and E attendance for mental health emergencies was significantly associated with a shorter time to autism or ADHD assessment.Research limitations/implicationsLimitations include the data quality and access. The code for neuro-developmental team was used differently in different places/ local government areas across the wider health region ICB.Practical implicationsThere were major issues with data quality and diagnoses coded as ID and FASD, which are largely underrepresented in health data sets. While CYP with an ID diagnosis are coded within the primary care LD QOF, the authors found no CYP coded with an FASD diagnosis in the data set included in this work.Originality/valueThis study has found that socio-economic factors such aslevel of deprication in a specific area, type of assesment, type of team refer to (autism team vs neurodevelopmental team), assesment and the number of presentations for mental health need in A and E departments are significantly associated with having shorter or longer waits for neurodevelopmental assessment.
PurposeThere is scant evidence for the treatment of complex emotional needs (difficulties consistent with a diagnosis of personality disorder), when an autism spectrum condition is also present. However, this is an increasingly common clinical picture for mental health services.Design/methodology/approachThis paper reports two case studies in which Structured Clinical Management (SCM) was offered to two clients with these co-occurring difficulties.FindingsFor these clients, following detailed collaborative formulations including informal sensory profiles, evidence-based adaptations were made to standard SCM treatment. This approach resulted in positive quantitative outcomes, and similarly positive qualitative feedback. These case studies provide promising preliminary support for offering SCM, with appropriate adaptations, to this client group.Originality/valueThe authors understand that these are the first case studies to explore the use of SCM with clients with co-occurring autism, adding to a limited evidence base considering the use of psychological treatments for clients with complex emotional needs and autism.
PurposeAutism is a complex neurodevelopmental condition thought to affect 1 in 100 children globally. More commonly diagnosed in males, and during childhood, diagnoses are increasingly being made throughout adulthood. This study aims to establish what age autistic people receive their diagnosis, and whether the age of diagnosis was influenced by their sex and by the presence of intellectual disability.Design/methodology/approachA quantitative, cross-sectional, retrospective study. Data was collected from the Primary Care records of six GP Practices covering Ellesmere Port, a large town in Northwest England with 71,210 people registered. Mean age of diagnosis was calculated for the group then for each subgroup, to allow comparison between males and females, and those with and without a documented intellectual disability.FindingsData from 1,130 autistic participants were analysed. Age of participants was between 3 and 81 years with an age of autism diagnosis of 1-72 years. In total, 85.6% of participants were diagnosed with autism by the age of 25 years, most commonly at 3 years of age (11.9%). The average age of diagnosis was 2.48 years later for females diagnosed across the lifespan. Average age of diagnosis was 5.05 years later for those with a learning disability.Practical implicationsThis study highlights the importance of healthcare professionals, educators and care givers recognising autistic traits in people across the lifespan, including the potential for diagnostic overshadowing. There are implications for commissioning autistic services, to ensure adequate assessment pathway capacity for adolescents and adults as well as children.Originality/valueThis study used Primary Care records from all the practices covering a large town, aiming to reduce recruitment bias and allowing a snapshot of a large sample size with a common referral pathway.
