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Adults With Autism Speak OutPerceptions of Their Life Experiences
Abstract
Three high-functioning adults With autism participated in a qualitative research study over a 9-month period. The purpose Was to investigate and describe their perceptions of their life experiences. Methods included conducting initial visits and intervieWs, conducting folloW-up intervieWs, and reading published and unpublished material Written by the participants. It Was determined that high-functioning adults With autism Want to be considered experts in the field of autism and Want to be consulted on issues related to autism. They are proud to have autism and do not desire to be a “neurotypical.” Over time, these adults have developed opinions on a Wide variety of topics related to autism. Recommendations to parents and professionals involved in Working With individuals With autism are provided.
... Furthermore, a diagnosis of ASD is associated with a higher risk of experiencing depression, anxiety, and suicidality (Leyfer et al., 2006), issues with conflicting identity (DePape & Lindsay, 2016;Lewis, 2016) and by extension families of individuals diagnosed with ASD are profoundly impacted by the disorder both emotionally and economically (Loukisas & Papoudi, 2016). These risk factors can be mitigated through timely diagnosis during the critical developmental period of childhood when available supports and interventions may affect life outcomes for diagnosed individuals (Hurlbutt & Chalmers, 2002). Furthermore, social, and environmental changes, such as those resulting from the COVID-19 pandemic, have been destabilizing and have had a psychological impact on individuals' quality of life globally (Aki et al., 2020). ...
... This was in line with Bargiela et al.'s (2016) finding that females who were diagnosed with ASD in their adulthood had received similar misdiagnoses, and, in some cases, no diagnosis was given at all. This tendency to misdiagnose individuals with autism has been linked to its co-morbidity with other conditions, such as ADHD and anxiety (Davidocitch et al., 2015;Hendrickx, 2015;Hurlbutt & Chalmers, 2002;Leyfer et al., 2006). In addition, prior to the development in understanding and assessment for ASD evident over the past 15 years, it is likely that professionals lacked training in screening for ASD and had limited diagnostic tools for assessment thereof. ...
... They expressed how they now understand the underlying cause for their difficulties in forming relationships and other challenges they had, but most importantly, how gaining this understanding has enabled them to be more accepting of who they are. Hurlbutt and Chalmers (2002), have noted that the level of acceptance that individuals with autism have of their diagnosis is influenced by whether family and friends are accepting of the diagnosis. In this study, it was found that participants whose families and friends were accepting, and supportive following disclosure of the diagnosis resulted in participants themselves being more accepting of their diagnosis and finding adaptive ways to manage some of their challenges, including disclosure in the workplace, which then allowed for requests for accommodations. ...
Autism Spectrum Disorder (ASD) is a pervasive neurodevelopmental disorder associated with qualitative impairments in social interaction, social communication and restricted, repetitive behaviour (American Psychiatric Association, 2013). Symptoms of ASD are first evident in infancy and childhood. However, individuals presenting with less overt ASD symptomatology may only be diagnosed in adulthood, when the expectation of independence and productivity results in a growing crisis for the individual. This study applied an exploratory qualitative research design to explore first-hand experiences of ten adult males (25 years and above) who were diagnosed with autism during their adulthood. Purposive sampling was used to select participants through the Neurodiversity Centre, Cape Town, South Africa. In-depth one-on-one interviews, guided by a semi-structured interview schedule were conducted. The thematic analysis technique and NVivo 12 qualitative analysis software were used to organise the data and identify themes. Three key themes emerged: failure to diagnose ASD in childhood despite signs and symptoms, ramifications of missed/misdiagnosis in childhood and adulthood on psychological well-being and the impact of receiving a diagnosis of ASD in adulthood. Missed/misdiagnosis had serious implications for psychological well-being throughout childhood and into adulthood. Late diagnosis resulted in missed opportunities for early intervention to address impairments associated with ASD. Receiving a diagnosis provided an explanation for long standing difficulties, offered a way forward in terms of developing coping strategies and allowed for self-acceptance. The implications of these findings for the development of better early screening and assessment for ASD are discussed and future research pathways suggested.
... Autism is a lifelong neurodevelopmental condition and while those presenting with more severe characteristics are likely to have had their autism recognised at an early age [3], there is still relatively little known about the lives of adults on the autism spectrum, whether diagnosed in childhood or later life. Understanding better the experiences (including aspirations, achievements and needs) of autistic adults and family members across the lifecourse is a priority for autistic individuals, their families, policy makers, service providers and researchers [4,5]. ...
... In recent years, research has shifted to include a focus on autism in adulthood [4,[6][7][8][9][10]. Whilst a number of studies have considered adult outcomes and their predictors [5,11,12], large scale empirical research into the life experiences of autistic adults remains limited [13]. ...
... Participants were able to describe in detail the day to day challenges they experienced in communicating with others. Indeed as previously documented [4], participants wanted their voices to be heard as the 'experts on their own life'. ...
Autistic children grow to become autistic adults, and autism is increasingly diagnosed in adulthood and later life. This qualitative study aimed to understand experiences of autism throughout adulthood. A national cohort study of autistic adults and relatives of autistic adults (ASC-UK), enabled purposive recruitment of a diverse sample. Semi-structured interviews were conducted with 29 autistic adults (aged 20–71 years), mostly diagnosed in adulthood, and 16 relatives (aged 31–81 years) of autistic adults diagnosed across both childhood and adulthood (including some with learning disability). Interview topics included health, relationships, education, employment, quality of life and everyday experiences. Thematic analysis of the accounts of the autistic adults identified six key themes relating to their experiences: (1) diagnosis as validating yet limiting; (2) supportive and non-supportive social agents; (3) the “invisibility” of the needs of autistic adults; (4) health in the context of autism; (5) staying ‘outside’ the circle; and (6) multiple lives with autism. Data from relatives about autistic adult experiences gave additional perspectives on these themes. Experiences reported in other studies–of ‘difference’ from others, challenges of social engagement, and learning to ‘conform’ to society’s expectations–were evident and relevant to male and female autistic adults, across all age groups, and unrelated to stage of life when diagnosed. Some expressed disappointment with their lives, but others were proud of their achievements. Education and employment, whilst challenging for many, were also rewarding for some. Health care and social services were often experienced as inaccessible, inappropriate, or lacking understanding of the individual’s needs. We conclude that greater public understanding of autism as experienced in adulthood is needed. Key priorities are improving the availability of ‘appropriate’ health and social care services for autistic adults and families, and providing practical support to enable enhanced participation in life.
... This omission reflects a misguided societal hierarchy and leads to bias against people with disabilities (Kirby et al., 2015). Ignoring voices of autistic individuals does not enable society to understand what autistic people actually endure on a daily basis, nor does it allow for appreciation of what autistic people contribute to society (Hurlbutt & Chalmers, 2002). Using a first-person perspective in research allows autistic adults to broaden interpretation of academic findings and contribute to enhancement of quality clinical services (Angulo-Jimenez & DeThorne, 2019). ...
... Using a first-person perspective in research allows autistic adults to broaden interpretation of academic findings and contribute to enhancement of quality clinical services (Angulo-Jimenez & DeThorne, 2019). Congruent with other research studies using first-person perspectives, Hurlbutt and Chalmers (2002) found autistic adults expected to be considered experts in the field of autism. They also found autistic adults wanted to be consulted on related issues and personally educate society about autism. ...
... Clearly, strong levels of insight into lived experiences of individuals can be gained by using first-person perspectives. Hurlbutt and Chalmers (2002) interviewed three adults with ASD. The researchers also examined the individuals' published and unpublished works to explore perceptions of their own life experiences. ...
Although there is a plethora of autism-related research, research related to transition and support needs for autistic adults remains limited. The purpose of this study was to understand the hopes, dreams, aspirations, challenges, and lived experiences of autistic adults. Academic literature has largely emphasized autism as a medical deficit, and use of first-person narratives to understand needs of people on the autism spectrum is rare. To fill this gap, I conducted a narrative study through a social model of disability lens and centered voices of autistic individuals. The narrative component of this research allowed readers to understand the subjective experiences of individuals directly from the source. This study included both academic literature and autobiographies written by autistic authors. The coauthor in this study is also an autistic adult who presented his life experiences for a central narrative. In contrast to the Diagnostic and Statistical Manual of Mental Disorders (DSM), which conceptualizes autism as a list of deficits, a number of powerful themes emerged from analysis of autistic authors’ lives: Isolation, Influence of Parents, Differences in Needs: Education and Employment, Empowerment, and Relationships. By using grounded theory analysis, these themes were contextualized via theories of neurodiversity paradigm and monotropism theory to better understand autistic experiences and needs. Furthermore, Milton’s (2012) double empathy problem reconceptualizes autistic experiences as a mutual lack of understanding of other’s behaviors by neurodiverse and neurotypical people, and the appropriate form of treatment would be to work toward understanding these dichotomous behaviors. This research recognized that only someone who is autistic can be considered a true expert on autism; thus, it is imperative researchers consult with and collaborate with autistic individuals to develop the most useful support services possible. By including autistic people in research design, implementation, and support services, academics and therapists can learn from the neurodiverse about problems that the social and cultural worlds present them with, thereby moving toward a more socially just society.
... Indeed, in addition to disruptions in both internal and external information sources, autism is characterized by social difficulties. Individuals with autism often report trouble forming and maintaining social relationships, which impacts their daily functioning and quality of life (American Psychiatric Association, 2013;Howlin et al., 2013;Hurlbutt & Chalmers, 2002;Jobe & Williams White, 2007;Kanfiszer et al., 2017;Lin & Huang, 2019;Tobin et al., 2014). Individual interactions require people to accurately anticipate others' future states, and successful relationships develop through such cumulative interactions. ...
... People with difficulty communicating with others also displayed less typical emotion transitions, more difficulty understanding their emotional experiences, and impaired facial emotion perception, which was associated with lower emotion prediction accuracy. Difficulty understanding social cues and employing socially normative behaviors are challenges frequently reported by people with autism and have been linked to difficulty forming and maintaining relationships (Howlin et al., 2013;Hurlbutt & Chalmers, 2002;Jobe & Williams White, 2007;Kanfiszer et al., 2017;Lin & Huang, 2019;Tobin et al., 2014). Research aimed at alleviating social difficulties often focuses on improving access to reliable external sources of social information. ...
The social world requires people to predict others’ thoughts, feelings, and actions. People who successfully predict others’ emotions experience significant social advantages. What makes a person good at predicting emotions? To predict others’ future emotional states, a person must know how one emotion transitions to the next. People learn how emotions transition from at least two sources: (a) internal information, or one’s own emotion experiences, and (b) external information, such as the social cues detected in a person’s face. Across five studies collected between 2018 and 2020, we find evidence that both sources of information are related to accurate emotion prediction: individuals with atypical personal emotion transitions, difficulty understanding their own emotional experiences, and impaired emotion perception displayed impaired emotion prediction. This ability to predict others’ emotions has real-world social implications. Individuals who make accurate emotion predictions have better relationships with their friends and communities and experience less loneliness. In contrast, disruptions in both internal and external information sources explain prediction inaccuracy in individuals with social difficulties, specifically with social communication difficulties common in autism spectrum disorder. These findings provide evidence that successful emotion prediction, which relies on the perception of accurate internal and external data about how emotions transition, may be key to social success.
... Some individuals consider this to dismiss the claims of negative implications, as it is supported by the grammatical principles of pronouns being placed before nouns (Halmari, 2011). In addition, within the field of autism, community members who view their (or their child's) diagnosis as an accepted part of their identity (Bagatell, 2010), further believe it promoted inclusion within society (Davidson & Henderson, 2010;Hurlburt & Chalmers, 2002). In the wider notion of 'neurodiversity', there is support for identity-first language, as autism is viewed one neurological form within the diversity of the human mind (Nicolaidis, 2012;Robertson, 2010). ...
... Many respondents with a diagnosis described language that separates autism from their identity can undermine positive characteristics and reinforce beliefs that autism is a 'wrong' or 'faulty' way of 'being' (Kenny et al., 2016). This finding reiterates previous work which has been conducted (Bagatell, 2010;Davidson & Henderson, 2010), pushing against using person-first language (Hurlburt & Chalmers, 2002). ...
Surfacing the Perspective of Autistic Girls Aged Between Thirteen and Eighteen Within
a Complex Social Discourse on Autism: A Qualitative Inquiry
... Social access is necessary to observe social rules and identify and connect with potential partners, and this might be challenging for some autistic people. Factors contributing to social isolation include limited social membership (Orsmond et al., 2013), communal living circumstances (Poon & Sidhu, 2017), and under-employment, despite a high level of education in many cases (Coleman & Adams, 2018;Hurlbutt & Chalmers, 2002). For example, Orsmond et al. (2013) found that in a large nationally representative cohort study, autistic young adults (n = 620) were two to four times less likely than young adults with other disabilities to see friends, and three times less likely to be invited to social activities (where potential partners can be met, and social communication observed and practiced). ...
... As with physical attractiveness, financial resources may provide an advantage in relationship initiation by compensating for social and emotional skill challenges. However, this may not present as great an advantage for the majority of autistic adults who experience under-or unemployment and the consequent financial strain (Coleman & Adams, 2018;Hurlbutt & Chalmers, 2002;Milovanov et al., 2013). The role of personality traits, notably the positive relationship between conscientiousness and attractiveness, is also an interesting aspect, but may have limited applicability to intervention as personality tends to remain stable over time (Cobb-Clark & Schurer, 2012). ...
Autistic individuals report similar levels of interest in romantic relationships to their nonautistic peers but experience greater challenges with the initiation and maintenance of these relationships. This systematic review synthesizes the factors that contribute to romantic relationship initiation and maintenance among autistic individuals to inform relationship support programs. Both successes (e.g., ability to initiate relationships and maintain a satisfying relationship) and challenges (e.g., relationship dissatisfaction) were investigated. Out of 1403 potentially relevant articles, 11 articles comprising 13 studies met the inclusion criteria (investigated factor[s] of romantic relationship success of challenges, involved participants with a formal autism diagnosis and/or their partners, presented quantitative results in relationship factors, and was available in an English-language version). Social and communication challenges were studied to the greatest extent and were associated with difficulties in both relationship initiation and satisfaction. Several factors relating to the partner of the autistic individual were associated with successful relationships, including reciprocal liking, partner support, and the ability to meet the autistic partner's needs. Conclusions are limited by the small number of studies but provide initial indications that social and communicative factors, as well as the role of nonautistic partners, are important to the success of romantic relationships for autistic individuals. In keeping in line with the community's preference for identity-first language (i.e., “autistic individual” rather than “individual with autism”), this language has been used throughout this review.
... One autism-related factor affecting healthcare access is the atypical nature of the social or communication skills of individuals with autism, which is always unique to each person (Eades et al., 2019;Klein et al. 1999). For example, an autistic person might find it challenging to process the three streams of information: visual (ability to look at the health care practitioner), verbal (listening to information), and processing (thinking about the information given) (Hurlbutt & Chalmers, 2002). ...
Background
Individuals with autism are more likely to suffer from various physical and mental health problems and experience disparities in effectively accessing healthcare services. This review aims to identify studies that report on the experiences of autistic children, their parents/carers, and the healthcare professionals treating them; to develop an understanding of the facilitators and barriers to healthcare access in order to inform policies and practice to improve access to healthcare for autistic children in the UK.
Methods
A total of 3069 records were screened, and 24 studies were included; six quantitative, four qualitative, and fourteen mixed-methodology studies.
Results
Professional and parental knowledge about autism, sensory issues, challenging behaviour, system-level barriers, patient-provider-parent communication issues, lack of person-centred care, stigma, and culture emerged as significant barriers to accessing healthcare for autistic children.
Conclusions
Families of autistic children experience several barriers to accessing healthcare. Recommendations for those planning services and clinicians are discussed.
... The tendency for self-sacrifice also appears to be present in parents with children with autism (Attwood, 2003;Hurlbutt & Chalmers, 2002). This finding has implications for future research, which could investigate variables such as excessive self-sacrifice as a moderator between the trait of intellect and psychological well-being. ...
Caregivers of children with autism spectrum disorder experience psychological pressure, which can affect their psychological well-being. This study aims to identify the personality traits which influence such well-being. A quantitative method was employed, involving 213 Indonesian participants who were caregivers of children with autism attending special schools or enrolled at specialized therapy centers, selected through purposive sampling. The personality traits were measured using the IPIP-BFM-25 scale, while psychological well-being was assessed using the Psychological Well-Being Scale. The data were analyzed using the PLS-SEM method with SMART PLS 3.0 software, employing the disjoint two-stage estimation approach. The results show that the traits of extroversion (β = 0.222, t = 2.249, p = .021); conscientiousness (β = 0.258, t = 2.782, p = .003); and emotional stability (β = 0.302, t = 4.371, p = .000) positively affected the caregivers’ psychological well-being. However, those of agreeableness and intellect did not have a significant impact. It is hoped that the study findings will contribute to the efforts to enhance the mental health of caregivers of children with autism.
... Individuals with ASD often face the risk of experiencing a series of behavioral, emotional, social, and professional challenges, such as maintaining romantic and friendship relationships, fitting into a work environment, and adapting to the norms imposed by the sociocultural context in which they find themselves [2]. By identifying needs and appropriate interventions, expanding access to services, decreasing self-criticism, and fostering a positive sense of identity, early detection of female ASD can help reduce some of the risks and improve the quality of life [3][4][5][6][7]. ...
Introduction: The prevalence of Autism Spectrum Disorder (ASD) is four times higher in males than females; however, females are significantly more likely to go undiagnosed due to the existence of a “female autistic phenotype”, a manifestation unique to females that conflicts with conventional, masculine conceptualizations of ASD. Furthermore, subthreshold autistic traits, which exert a significantly negative impact on quality of life and represent a vulnerability factor for the development of other psychopathological conditions, may remain even more under-recognized. Subsequently, many women with ASD may never receive a diagnosis or any resulting care, with serious consequences for their health. Aims: We aimed to describe two brief cases in order to confirm the diagnostic difficulties that ASD female undergo during their clinical evaluation and the possible alternative phenotype that they can manifest. Methods: We reported the cases of two young women on the autism spectrum that came to clinical attention only after the development of severe symptomatology attributed to other mental disorders, overlooking the presence of underlying autism spectrum features and a brief résumé of the literature on this topic. Results: These cases confirm the need for a timely and proper identification of females on the autism spectrum in order to prevent complications and improve the outcome. Conclusions: Research on gender differences could lead to a reexamination of the sex ratio in the prevalence of ASD and provide a better understanding of several psychiatric conditions that are frequently diagnosed in women, supporting the neurodevelopmental approach to psychopathology.
... The current study examines autistic adults' perspectives on their experiences of being parented during childhood and the advice that they would like to offer to all parents of autistic children in the context of their own lived experience. Autistic adults want to be consulted on issues related to autism, and have opinions on a wide variety of topics (Hurlbutt & Chalmers, 2002); however, their opinions have often been overshadowed by those of neurotypical professionals and stakeholders. Thus, the current study aimed to address these gaps in the literature by asking autistic adults about their own experiences of being parented in childhood and exploring what they thought would have been helpful for their own parents to have known and done as parents of autistic children. ...
Parenting has implications for psychosocial adjustment well into adulthood. While much is known about the parenting behaviors that influence adjustment in autistic children, little is known about how the effects of parenting persist in autistic adults. Further, autistic adults’ perspectives on how they were parented have not been investigated to date. This study aimed to examine autistic adults’ perspectives on their experiences of being parented in childhood and the advice they would like to offer to parents of autistic children in the context of their lived experience.
Ninety-six Australian autistic adults responded to open-ended questions in a larger survey assessing childhood experiences of being parented, adult attachment, psychological flexibility, and adult adjustment.
A total of 10 themes were identified. Autistic adults emphasized the importance of embracing early diagnosis and that the goal of parents should be their child’s happiness rather than “neurotypical” success. They highlighted the importance of unconditional love and understanding of their autistic child, recognizing that autistic children have similar fundamental needs as other children. Participants discussed the importance of structure and predictability in the home to feelings of safety. Parents were encouraged to meet them halfway. Finally, autistic adults reflected on the role of parents in advocacy and parental well-being. Parental neurodivergence was discussed as a possible bane or boon.
Autistic adults emphasized the importance of unconditional acceptance from their parents, with the goal being their child’s happiness. Findings from this study will inform future programs for families of autistic children.
... Participants in autistic and ADHD groups expressed that thinking differently or seeing the world differently contributed positively to their creativity. This is in line with previous studies, where participants expressed that their autistic identity gave them unique worldviews and perceptions Cooper et al., 2017;Hurlbutt & Chalmers, 2002). ...
Exploring creativity within the autistic and ADHD community is important as their strengths are often unrecognised in society. The neurodiversity perspective considers autism and ADHD as variations in brain structure and function, leading to experiencing the world differently. It should then, follow that neurodivergent individuals may express creativity differently from standard expectations. However, commonly used creativity measures do not accommodate the different ways in which neurodivergent individuals process and combine external information, thus failing to capture the different and unique presentations of creativity. In light of this, we aimed to develop a novel measure to explore creativity within autistic and ADHD individuals. The sample (N=26) included 3 autistic, 5 autistic+ADHD, 8 ADHD and 10 neurotypical adults. Various methods were used, including: two storytelling tasks, the Kaufman Domains of Creativity Questionnaire and semi-structured interviews. Reflexive thematic analysis demonstrated different presentations of creativity across groups. Two themes were identified regarding factors which affect creativity in neurodivergent individuals: attention and thinking differently or seeing the world differently. Further, three themes suggested improvements for future creativity tests: time, anxiety and instructions. Findings have implications not only for developing an inclusive creativity measure, but also for designing strengths-based interventions to facilitate creativity in neurodivergent individuals.
... Feeling acceptance by parents, friends and society worked as a protective agent for individuals with ASD, which is the most significant variable for good mental health and well-being (Cage et al., 2018). Similarly, a longitudinal study by Hurlbutt and Chalmers (2002) on the life perception of adults with ASD exposed that adults with ASD have faith in supportive family and supported friends to help them establish a satisfactory emotional state of self-worthiness. ...
Autism Spectrum Disorder (ASD) is a unique disorder that
cannot be easily diagnosed; every individual with autism is different from another individual, and faces different issues in their life span such as lacking in social communication, socialization, cognition, and behavioral issues, etc. These
problems may vary from individual to individual and differ in severity level. However, adults with autism tackled more mental health problems in their adulthood as compared to their childhood. For this purpose, it was hypothesized that adults with ASD faced many more mental health issues in their social settings. This survey research used a quantitative approach and the data was collected through convenience sampling method. The sample was adults with autism (N=90), having the age ranged from 17 years and above with mild to moderate severity levels and Asperger. The Warwick-Edinburgh Mental WellBeing Scale (WEMWBS) was used to collect the data, which was analyzed
through descriptive statistics and ANOVA test to find the gender differences. Results showed that adults with ASD faced multifarious mental health problems in different areas of their lives, especially in social settings. Low scores were observed in almost all items of the WEMWBS, which indicates low mental
well-being in adults with ASD. The main reason for low mental-health and well-being is stigmatization, isolation, bullying, incantation/black-magic as treatment, etc., instead of medical or therapeutic services. It was recommended that the barrier of stigma should be removed through awareness related programs at different governmental levels, elementary level at school and start campaigns through media.
Keywords: Mental Health, Well-being, Adults with Autism Spectrum Disorder (ASD), Stigma.
... Autistic people 1 are at risk of emotional, behavioural, social, occupational and economic difficulties (Howlin & Moss, 2012). The timely detection of autism can reduce these risks and lead to improvements in quality of life due to the identification of needs, provision of support, access to services and reduction of stigma and self-criticism (Calzada et al., 2012;Hurlbutt & Chalmers, 2002;Portway & Johnson, 2005;Wong et al., 2015). Diagnosis may also help reduce masking as individuals feel more comfortable not conforming to non-autistic expectations leading to improved quality of life (Bradley et al., 2021). ...
A broadening of diagnostic criteria and increased awareness of autism has led to a large number of individuals whose difficulties remained undetected until adulthood. This systematic review aimed to synthesise empirical evidence of the experience of individuals who received their diagnosis of autism in adulthood. Eight studies met the inclusion criteria. A meta-ethnographic approach was used to synthesise the findings. Analysis revealed two meta-themes: feeling “like an alien” and the “not guilty” verdict, each with three associated subthemes. The findings indicate the need for timely diagnosis and provision of post-diagnostic support to alleviate the mental health implications of not having a framework to understand one’s experiences and to support the process of adjustment to the diagnosis.
... To capture a wide range of experiences that could affect mood, we analyzed open-ended survey responses from a large number of autistic adults using qualitative methods. We aimed to capture themes of self-reported daily life experiences that make autistic adults happy or unhappy, thus providing important information on how to identify a range of treatment targets that improve mood in autistic adults (Hurlbutt & Chalmers, 2002). ...
Purpose:
Daily mood can be influenced by a range of experiences. Identifying everyday life experiences that make autistic adults happy and unhappy holds potential to foster positive mood and tackle mental health problems amongst this group.
Methods:
A total of 293 autistic adults between the ages of 18 to 35 years old (mean age of 26.51 years old (SD = 4.62); 43.3% female gender, 4.8% nonbinary) provided open-text responses regarding everyday sources of happiness and unhappiness. Using an iterative process of inductive coding, 14 happy themes and 22 unhappy themes of mood-changing life experiences were identified based on self-report qualitative data.
Results:
Common themes across the happy and unhappy domain involved social partners, social interactions, and engagement in recreational and employment activities, with additional distinct themes specific to happy or unhappy mood. Top themes identified in the happy domain emphasizes encouraging quality relationships and positive interactions with others and cultivating supportive work/societal environments to build a sense of achievement and value. Meanwhile, emotional tolls accompanied negative relationships and interactions, underscoring the necessity to provide autistic adults with conflict resolution and coping skills to increase feelings of happiness.
Conclusion:
Overall, the wide range of sources of happy and unhappy everyday experiences highlights the importance of considering personal preferences in engagement with others and activities in treatment.
... Because of the increased number of children and adolescents with ASD, the United States has tried to develop the most advanced technologies to reduce the problems of these people. The Autism Society of America strives to provide as much perspective as possible for individuals and families with autism [72]. Therefore, studies suggest emerging technologies such as computer games have been designed and widely adopted for people with ASD in developed countries such as the United States [73]. ...
Introduction: Children with Autism Spectrum Disorder (ASD) have diferent cognitive and intelligence profles than
typical developing individuals. Some of these children need cognitive rehabilitation. This study’s main purpose is to
provide a systematic review about applying computerized cognitive games for autistic children and to determine the
efectiveness of such interventions.
Material and methods: A thorough search of the ISI Web of Science, Medline (through PubMed), Scopus, IEEE
Xplore, and APA PsycInfo databases was performed for articles published from inception to May 17, 2022.
Results: Of 1746 papers, 28 studies were found to be eligible in this systematic review. Fifteen studies (53.57%)
compared a Control Group (CG) with Experimental Groups (EGs), while 13 papers (46.42%) evaluated only the impact
of the applied intervention in an experimental group. Major domains of cognitive functions are divided into fve main
categories: 1. Executive functions, 2. Social cognition/emotions, 3. Attention/concentration, 4. Learning and memory,
and 5. Language. In 42.85% (12 studies) of the screened papers, social cognition and emotions were assessed after
cognitive rehabilitation. The highest rate of efects reported by studies were related to social cognition enhancement.
Of the total number of included studies, 17 studies reported a positive efect at all scales, of which nine were quasi�experimental, and seven were fully experimental.
Conclusion: Using suitable computerized game-based solutions could enhance cognition indexes in autistic chil‑
dren. Hence, further investigation is needed to determine the real efectiveness of these novel technologies.
... For instance, an increasing body of research around sensorimotor characteristics: sensory responsivity and motor coordination (Torres and Donnellan, 2015;Robledo et al., 2012;Hannant et al., 2016;Whyatt & Craig, 2013), motor execution and preparation (Glazebrook et al., 2006), hyper-hypo sensitivity to certain stimuli (Cermak et al., 2010;Gomot et al., 2002). Also, we now find qualitative studies surrounding the ways autistic people cope with sensory hyperstimulation by engaging differently with the environment and the objects surrounding them, for example, with motor stereotypies or self-stimulatory behavior, also known as "stimming" (Kapp et al., 2019;Conn, 2015;Bakan, 2014); and the incorporation of autistic adults and infants into the research of their own lived experience (Kapp et al., 2019;Bargiela et al., 2016;Hurlbutt & Chalmers, 2002). ...
Autism Spectrum Disorders have been defined as a group of developmental conditions that affect the capacity to interact with the physical and social environment, among others. A core feature of autism is the presence of restricted and repetitive behaviors that vary in complexity, form, and frequency throughout life history. These core features have traditionally been defined as impairments that interfere with communication competence. From an embodied approach, however, these actions could be seen as characteristic ways of interacting with the world. In this sense, we take an enactive and embodied approach to cognition in which we conceive cognitive agents as sensorimotor systems whose perception-action occurs in terms of affordances. This framework provides an integrative view of autism considering affectivity, perception, action, exploration, and interaction within a complex and dynamic dimension. Following this, we propose different applications based on embodied, intercultural, and feminist epistemologies, to understand and participate with autistic and cognitively diverse populations. The change in theoretical and methodological paradigms within embodied cognitive science towards autism and other cognitive diversities and how they engage with the world can lead to more comprehensive, integrative, and bioethical approaches.
... Correspondingly, many reasoned that person-first language should not be used as autism cannot and should not be separated from them, and such language inadvertently conveys that autism is a 'defect' to be removed. These sentiments chime with previous work (Bagatell, 2010;Bury et al., 2020;Davidson & Henderson, 2010;Hurlbutt & Chalmers, 2002;Kenny et al., 2016;Botha et al., 2021) and reflect a growing movement amongst activists and scholars arguing against person-first terminology. Rather, the autistic participants responded that language should be identity-first as autism is an integral part of who they are, just like their ethnicity, gender or sexuality. ...
Over the past two decades, there have been increasing discussions around which terms should be used to talk about autism. Whilst these discussions have largely revolved around the suitability of identity-first language and person-first language, more recently this debate has broadened to encompass other autism-related terminology (e.g., 'high-functioning'). To date, academic studies have not investigated the language preferences of autistic individuals outside of the United Kingdom or Australia, nor have they compared levels of endorsement across countries. Hence, the current study adopted a mixed-methods approach, employing both quantitative and qualitative techniques, to explore the linguistic preferences of 654 English-speaking autistic adults across the globe. Despite variation in levels of endorsement between countries, we found that the most popular terms were similar-the terms 'Autism', 'Autistic person', 'Is autistic', 'Neurological/Brain Difference', 'Differences', 'Challenges', 'Difficulties', 'Neurotypical people', and 'Neurotypicals' were consistently favored across countries. Despite relative consensus across groups, both our quantitative and qualitative data demonstrate that there is no universally accepted way to talk about autism. Our thematic analysis revealed the reasons underlying participants' preferences, generating six core themes, and illuminated an important guiding principle-to respect personal preferences. These findings have significant implications for informing practice, research and language policy worldwide.
... In the field of ASD qualitative research has generally been populated by experiences of children and their families (Phelps et al., 2009) with a smaller number of studies exploring the experiences of adults. Hurlbutt & Chalmers (2002) report that adults with ASD have their own "unique culture", views of "support systems and self-worth" and can describe factors that can help "make a difference" to their care. A small body of research has focused on the experiences of clinician's supporting adults with ASD. ...
... Moving beyond the intimacy of familial contexts, we find that numerous commentators have documented the creation of a shared Autistic identity amongst autistic adults. This identity is usually expressed as part of a joint commitment to self-advocacy situated within a neurodiversity framework (Bertilsdotter Rosqvist et al., 2013;Hurlbutt & Chalmers, 2002). Some of these studies have been authored by autistic scholars (e.g., Botha et al., 2022;Dekker, 1999;Singer, 1999) writing about "the importance of feeling a connection to other 'like-minded' people" (Milton & Sims, 2016, p. 529) preferentially fostered in autistic spaces (organised by autistic people for autistic people), which offer mutual acceptance and empathy Sinclair, 2010). ...
In this paper, we report on a participatory oral history study documenting the lives of late-diagnosed autistic adults in Australia. We interviewed 26 autistic adults about their life history and the impact of late diagnosis. All were diagnosed after the age of 35, growing up in an era when autism was not well known. Using reflexive thematic analysis, we uncovered a rich body of reflections on shared Autistic identity and identified three major themes within that data set: ‘conceptualising the Autistic family’, ‘creating Autistic community’, and ‘contesting Autistic identity’. Overall, the study provides insights into the active creation of shared Autistic identity and the importance of Autistic community to these late-diagnosed autistic adults.
... Concerns of insecurity and vulnerability are not unwarranted. Research has identified high rates of abuse of autistic girls and women (Bargiela, 2015;Cridland et al., 2014;Hurlbutt & Chalmers, 2002). Five participants disclosed instances of serious abuse during their lifetime. ...
The diagnosis of autism spectrum condition (ASC) in women is increasing, prompting research into the gendered experience and presentation of female ASC. To complement this growing body of research, the current study utilised a qualitative approach informed by a feminist disability framework to explore how the intersecting dimensions of difference, gender, and ASC influence autistic women’s subjectivity and wellbeing. Drawing on the experiences of eight late-diagnosed autistic women, thematic analysis highlighted experiences of early marginalisation, challenges of living outside gendered social norms, the psychological and emotional consequences of masking, and the impact of diagnosis on subjectivity, identity, and wellbeing. Participants developed their authenticity and personhood within a performative social context that required masking of the self, a complex process with wide-ranging consequences. Findings also highlight the importance of acceptance, representation, and community for the wellbeing of autistic women. This research challenges the dominant, masculinised construction of ASC. It highlights the need for the ontological status of ASC to be reconceptualised to incorporate diverse experiences of the condition across the gender spectrum. Future research should explore how psychology can facilitate this reconceptualisation.
... Pourtant, l'identification au TSA en tant que groupe social peut permettre une amélioration de l'estime de soi chez ces jeunes, notamment s'ils arrivent à identifier les forces découlant du TSA (Kate Cooper et al., 2017;Hurlbutt & Chalmers, 2002). Ainsi, l'adhésion à des groupes de personnes ayant un TSA, que ce soit des groupes de paroles ou des forums en ligne, pourrait permettre l'amélioration de l'estime de soi en passant par une amélioration de la perception du TSA (Brownlow & O'Dell, 2006 (Meiss, Tardif, Arciszewski, Dauvier, & Gepner, 2015). ...
Dès la première description du Trouble du Spectre de l'Autisme, Kanner (1943) a souligné la présence momentanée de manifestations dépressives chez un des cas. Aujourd'hui, l'Episode Dépressif Caractérisé (EDC) est considéré comme étant un des troubles psychiatriques les plus fréquemment associés au TSA, ayant des répercussions à court, moyen et long termes sur l'enfant ayant un TSA et sa famille. Pourtant, aujourd'hui, il n'existe pas de consensus concernant la façon d'évaluer la symptomatologie dépressive chez les enfants et les adolescents ayant un TSA. Les objectifs de cette recherche sont de créer et de valider une échelle de repérage des signes de l'EDC, d'identifier les facteurs associés aux signes de l'EDC chez les enfants et les adolescents ayant un TSA et d'étudier les manifestations dépressives dans leur fonctionnement habituel. Quatre études ont été réalisées. La première a permis de créer l'échelle de repérage des signes de l'EDC spécifique aux enfants et aux adolescents ayant un TSA. Elle est composée de 3 parties : une évaluation des douleurs et des médicaments pris par l'enfant, le listing des changements environnementaux et l'évaluation de la symptomatologie dépressive ; en deux étapes : une description du fonctionnement habituel de l'enfant puis une mesure de l'ampleur des changements de comportements. La seconde étude visait à valider cette échelle (N=153). La fidélité inter-juges est très satisfaisante mais devra être évaluée sur un échantillon plus important (ρfiabilité=0,98 ; ρfiabilité=0,02). L'échelle a de bonnes validités apparente, de contenu et de critère et une excellente consistance interne (αéchelleEDC=0,91). Elle est composée de deux facteurs : un de changements comportementaux et l'autre de changements émotionnels et cognitifs. La troisième étude visait à identifier les facteurs associés à l'EDC chez les enfants et les adolescents ayant un TSA (N=58). Des facteurs individuels, notamment liés au parcours de soin concernant le diagnostic de TSA mais aussi la santé somatique ; familiaux, notamment le vécu parental et le désir d'avoir des amis sont liés à la symptomatologie dépressive. La quatrième étude avait pour objectif d'identifier des manifestations dépressives dans le fonctionnement habituel des enfants et des adolescents ayant un TSA (N=133). Plus d'un tiers de l'échantillon exprime de la tristesse quasiment tous les jours et plus d'un quart n'exprime quasiment jamais de joie. Plus de la moitié des enfants et des adolescents de l'échantillon ne prend aucun plaisir au quotidien. Un jeune sur cinq a des comportements auto-agressifs et 28% ont des comportements hétéro-agressifs tous les jours. La moitié de l'échantillon a des difficultés de sommeil et 58% en a d'appétit tous les jours. Enfin, trois quarts des jeunes expriment de la culpabilité ou de la dévalorisation tous les jours.
... For example, our observation that living closely with others was very challenging demonstrates the value of appropriate housing long before autistic people face homelessness directly. Second, exploring opportunities for people on the autism spectrum to build positive social networks and facilitating these in suitable ways has potential value in strengthening support networks that could protect against homelessness at times of crisis, noting that some autistic people do have positive family networks (Hurlbutt and Chalmers 2002). Exploring the development and maintenance of such networks in ways that recognise the mutual challenges of shared communication instead of placing sole responsibility on autistic people could thus prove valuable. ...
Autistic people appear to have a higher risk of becoming and remaining homeless than people without autism. This article is based on a wider research study exploring diverse homelessness experiences in Oxford, UK. Using life mapping, a visual research method, we gained verbal and visual accounts of participants’ housing and homeless histories. These accounts support past evidence of higher than expected levels of autism among homeless people, while highlighting for the first time specific, additional risks of homelessness among autistic people. This group also appeared to have fewer means to reduce the risk of homelessness, and faced multiple challenges to resolving their homelessness. Our findings extend existing understandings of autism and homelessness, and of the disabling practices that autistic people may face within the diversity of homeless experiences, while adding valuable biographic detail to the factors leading to homelessness and attempts to exit homelessness. We also discuss potential policy interventions.
... Many of the employers interviewed herein also remarked on this issue. Previous research has found social difficulties with colleagues and supervisors can hinder job performance and can even lead to job termination (Bolman, 2008;Hendricks, 2010;Hurlbutt & Chalmers, 2002. ...
This research sought for the first time to identify the extent to which autistic people, and those with high levels of autistic traits, are pursuing careers in the performing arts, and to examine the experiences and support needs of this population. In Chapter 2, I determined that there are significant relationships between autistic traits, occupational self-efficacy, quality of life, mental health, and need for support in performing arts professionals, as well as qualitatively analysed professionals’ experiences of accessing support in the industry. I showed that there a significant minority of autistic professionals in the performing arts who may have unmet support needs. In Chapter 3, I found similar significant relationships between autistic traits, educational self-efficacy, quality of life, mental health, and need for support in the performing arts student population. Additionally, I compared their experiences to students studying other subjects and found very few differences, suggesting that performing arts education is not a uniquely challenging environment compared to other higher education courses. In Chapter 4, I analysed, in-depth, the support needs and views of autistic performing arts professionals on working in the industry, and the attitudes and levels of autism knowledge of performing arts employers. Some autistic professionals had access to support, but the majority felt that there was not enough available and highlighted many ways in which they could be better supported. Performing arts employers varied in their experiences of working with autistic people, many had limited knowledge about autism-specific support or relied on other professionals to provide it. In Chapter 5, I tested the feasibility and acceptability of professional mentoring as a form of employment-based support for autistic performing arts professionals. I found it to be an acceptable and workable method of support, with many participants reporting increased occupational self-confidence. Finally, in Chapter 6, I summarise the main findings from the empirical studies presented in this thesis. I discuss the contributions the studies have made towards our understanding of the experiences and support needs of autistic performing arts professionals. I describe the limitations of my research, and I outline the implications and possible future directions for this research.
... A similar protective effect may be tied to the concept of neurodiversity, which considers differences in cognitive styles and neural function as positive, integral elements of the human condition, which deserve to be valued and celebrated, rather than framed as disability or disorder (Jaarsma & Welin, 2012). Many autistic individuals take pride in identifying as neurodivergent and want to be accepted by others based on their authentic identity, i.e., for being "who they really are" (Cage et al., 2016(Cage et al., , 2018Humphrey & Lewis, 2008;Hurlbutt & Chalmers, 2002;Jaarsma & Welin, 2012;Robertson, 2009). Consistent with work in other populations showing unconditional self-acceptance is negatively correlated with anxiety and depression, studies show that autistic individuals who self-identify more strongly with neurodiversity have more positive views of ASD (Cage et al., 2018;Kapp et al., 2012). ...
While long described in anecdotal accounts of the lived experiences of autistic individuals, the phenomenon of behaving in ways that appear inconsistent with the presence of autism (or passing as non-autistic; PAN) has recently seen a dramatic increase in scrutiny in the published scientific literature. Increased research attention has coincided with a proliferation of methods, definitions, measures, and population assumptions associated with PAN. To date, however, no review has sought to systematically identify and synthesize the literature on PAN. This systematic review reflects the state of the PAN literature as of May 2020. Ninety articles were screened, 66 were identified for evaluation, and 46 met inclusion criteria and were reliably coded for study characteristics and participant characteristics. Results reveal that the PAN literature includes a relatively even mix of qualitative, quantitative, and mixed-method studies, and that a variety of terms are used for PAN (with masking and camouflage being the most frequent). Sample sizes varied widely (from one to 832 participants), with 63.06% of participants being categorized as autistic. Nearly all studies reported methods for confirming autism diagnoses, with community and clinical diagnoses being most common. The majority of studies reported participant gender, with slightly more females included than males on average, but fewer than half of all studies compared PAN across genders. Nearly all studies reported participant age, demonstrating a wide range of 2 to 79 years, with a mean age of 23.85. Conversely, only 23.91% of studies provided participant race or ethnicity data. Nearly all studies formally or informally excluded participants with intellectual disability. Finally, measures of internalizing symptoms, which are often thought to be linked to PAN, were reported in only 17.4% of studies. Implications for gaps in understanding of PAN and future directions for the field are discussed.
... This study examined understandings of autism among autistic young people, their parents and teachers, related to identity construction and school experiences. For the young people in this study, understanding what "being autistic" meant and their acceptance of it, changed and unfolded in the broader context of their early adolescent development as they "grew up" with the diagnosis (Hurlbutt and Chalmers, 2002;Huws and Jones, 2015). The extent to which "autism" was integrated into their developing identities was mediated by the responses of others in their social environments (Bagatell, 2007;Humphrey and Lewis, 2008). ...
Purpose
A key development in early adolescence is the active construction of individual identity; for autistic young people, integrating the idea of “being autistic” forms part of this process. The purpose of this paper is to explore identity development from a contextualist perspective, foregrounding young people’s experiences within mainstream educational settings.
Design/methodology/approach
A longitudinal, qualitative methodology was used: semi-structured interviews were conducted annually with 14 autistic young people, their parents and teachers between school years 6 and 9.
Findings
Young people felt different from their neurotypical peers and their acceptance of their diagnosis changed over time as they managed their developing personal and public identities. In pursuit of being treated “normally,” many camouflaged their differences at school, which sometimes involved opting out of school-based support. Adults described their own understandings of autism and discussed the responses of others in the school environment to autistic differences.
Originality/value
The influence of sociocultural discourses of autism on young people’s identity development is discussed and implications for both school based and post-diagnostic support for young people and their families explored.
... Diagnosis of autism in adulthood is recognised as a clinically significant issue (National Institute for Health and Care Excellence, 2012), with a so-called lost generation of people previously excluded from a diagnosis prior to changes in the diagnostic criteria and re-conceptualisation of autism as a spectrum condition (Lai & Baron-Cohen, 2015). Diagnosis in adulthood is crucial for increasing access to support and appropriate services but could also reduce self-criticism and foster a positive sense of identity in previously undiagnosed or misdiagnosed individuals (Hurlbutt & Chalmers, 2002;Portway & Johnson, 2005;Wong et al., 2015). Healthcare professionals working with autistic 1 people across the lifespan and in all contexts therefore play an important role in the recognition of autism and appropriate signposting to services. ...
Healthcare professionals play a vital role in identifying and supporting autistic people. This study systematically reviewed empirical research examining healthcare professionals’ knowledge, self-efficacy and attitudes towards working with autistic people. Thirty-five studies were included. The included studies sampled a range of countries and professional backgrounds. A modified quality assessment tool found the quality of the included studies was moderately good. Narrative synthesis indicated that healthcare professionals report only moderate levels of autism knowledge and self-efficacy, and often lack training. Variation within and between countries and professional background was not explained by demographic factors. The reviewed evidence suggests health professionals’ limited knowledge and self-efficacy in working with autistic people is a challenge to the provision of healthcare for autistic individuals.
... Because individuals with autism have different needs and require specific communication practices to contribute to organizational performance [23], it can be argued that the existing communication strategies generally used in the workplace context do not sufficiently address the specific needs of workers with ASD. For instance, difficulties associated with following social rules, understanding affect, reading facial expressions or the tone of voice, asking too many questions, or inability to 'read between the lines' (see: [24,25]) often mean that individuals with ASD experience problems with communication and social interaction with supervisors and coworkers [26,27]. Navigating such communication and interaction processes is often problematic, even before employment and begins, with the process of job searching and matching, through mastering the job application and interview process [24]. ...
Difficulties with interpersonal communication experienced by individuals with autism
spectrum disorders (ASD) significantly contribute to their underrepresentation in the workforce as well as problems experienced while in employment. Consistently, it is vital to understand how communication within the employment cycle of this group can be improved. This study aims to identify and analyze the possibilities of modifying the communication processes around recruitment, selection, onboarding, and job retention to address the specific characteristics and needs of the representatives of this group. This qualitative study is based on 15 in-depth interviews conducted with 21 field experts, i.e.,: therapists, job trainers, and entrepreneurs employing people with ASD. The findings of this research informed the creation of an inclusive communication model supporting the employment cycle of individuals with ASD. The most important recommendations within the model that was created include the modification of job advertisements, use of less structured job interviews, providing opportunities for mentorship, and supportive and non-direct, electronically mediated communication. To apply the above-mentioned solutions and take full advantage of the talents of people with ASD, it is also necessary to provide tailored sensitivity and awareness training programs for their direct addressees as well as their neurotypical colleagues, including managerial staff.
... There is now a robust evidence base on the health and other outcomes of autistic adults. Autistic adults without LDs experience poorer outcomes than the general population in many areas of their lives, 4,5 including mental health, particularly anxiety and depression; 6-11 social isolation; [12][13][14][15] employment; [16][17][18][19] and achieving independent living. 20 More recent evidence also points to poorer physical health outcomes and increased risk of suicide. ...
Abstract
Background
The National Institute for Health and Care Excellence recommends that every locality has a ‘Specialist Autism Team’: an specialist autism, community-based, multidisciplinary service that is responsible for developing, co-ordinating and delivering care and support. The National Institute for Health and Care Excellence recommended that this novel delivery model was evaluated.
Objectives
The objectives were to identify services fulfilling the National Institute for Health and Care Excellence’s description of a Specialist Autism Team; to describe practitioner and user experiences; to investigate outcomes; to identify factors associated with these outcomes; and to estimate costs and investigate cost-effectiveness of these services.
Design
During stage 1, desk-based research and a survey to identify Specialist Autism Teams were carried out. Stage 2 comprised a mixed-methods observational study of a cohort of Specialist Autism Team users, which was followed for up to 2 years from the assessment appointment. The cohort comprised users of a Specialist Autism Team not previously diagnosed with autism (the ‘Diagnosis and Support’ group) and those already diagnosed (the ‘Support-Only’ group). Stage 2 also involved a nested qualitative study of senior practitioners and an exploratory comparison of the Diagnosis and Support group with a cohort who accessed a service which only provided autism diagnostic assessments (‘Diagnosis-Only’ cohort).
Setting
The setting in stage 2 was nine Specialist Autism Teams; three also provided a regional diagnostic assessment service (used to recruit the Diagnosis-Only cohort).
Participants
There were 252 participants in the Specialist Autism Team cohort (Diagnosis and Support, n = 164; Support Only, n = 88) and 56 participants in the Diagnosis-Only cohort. Thirty-eight participants (across both cohorts) were recruited to the qualitative evaluation and 11 practitioners to the nested qualitative study.
Main outcome measures
The World Health Organization Quality of Life assessment, abbreviated version (psychological domain) and the General Health Questionnaire (12-item version).
Data sources
Self-reported outcomes, qualitative interviews with users and focus groups with practitioners.
Results
A total of 18 Specialist Autism Teams were identified, all for autistic adults without learning disabilities. Services varied in their characteristics. The resources available, commissioner specifications and clinical opinion determined service design. Practitioners working in Specialist Autism Teams recruited to stage 2 reported year-on-year increases in referral rates without commensurate increases in funding. They called for an expansion of Specialist Autism Teams’ consultation/supervision function and resources for low-intensity, ongoing support. For the Specialist Autism Team cohort, there was evidence of prevention of deterioration in outcomes and positive benefit for the Diagnosis and Support group at the 1-year follow-up (T3). Users of services with more professions involved were likely to experience better outcomes; however, such services may not be considered cost-effective. Some service characteristics were not associated with outcomes, suggesting that different structural/organisational models are acceptable. Findings suggest that one-to-one work for mental health problems was cost-effective and an episodic approach to delivering care plans was more cost-effective than managed care. Qualitative findings generally align with quantitative findings; however, users consistently connected a managed-care approach to supporting improvement in outcomes. Among the Diagnosis-Only cohort, no changes in mental health outcomes at T3 were observed. Findings from the interviews with individuals in the Diagnosis and Support group and Diagnosis-Only cohort suggest that extended psychoeducation post diagnosis has an impact on immediate and longer-term adjustment.
Limitations
Sample size prohibited an investigation of the associations between some service characteristics and outcomes. Comparison of the Diagnosis-Only cohort and the Diagnosis and Support group was underpowered. The economic evaluation was limited by incomplete costs data.
Conclusions
The study provides first evidence on the implementation of Specialist Autism Teams. There is some evidence of benefit for this model of care. Service characteristics that may affect outcomes, costs and cost-effectiveness were identified. Finding suggest that extended psychoeducation post diagnosis is a critical element of Specialist Autism Team provision.
Future work
We recommend a comparative evaluation of Specialist Autism Teams with diagnosis-only provision, and an evaluation of models of providing consultation/supervision and low-intensity support.
Funding
This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 48. See the NIHR Journals Library website for further project information.
... Some students perceived the label marked them to be different from their peers, and also can alter the lens through which other people perceived them at school, such that their social naïveté often made them into easy targets for bullying among peers (Humphrey & Lewis, 2008). This heightened level of self-doubt and need for acceptance by others during adolescence is somewhat in contrast to autistic adults, who are more accepting of their own differences, expressed a need to educate others about autism through self-advocacy, and challenged the ideas of fitting in and being normal as imposed by neurotypicals (Hurlbutt & Chalmers, 2002). Greater self-acceptance of autism has also been associated with lower depressive symptoms (Cage et al., 2018) and better self-esteem (Cooper et al., 2017), suggesting that autism identity can be an important protective factor against some mental health difficulties among autistic adults. ...
Lay abstract:
Within the neurodiversity movement, one recent divergence is in the semantic choice of language when describing autism, as members of the autism and autistic community preferred to use identity-first language (autistic person), whereas professionals were more likely to use person-first language (person with autism). This study explored 803 e-learners' responses from their comments across two massive open online courses on autism education held between 2017 and 2019. Learners agreed that autistic individuals should guide others on which terminology to use when describing autism, and although identity-first language acknowledges autism as part of an individual's identity, it can also conjure up negative stereotypes and be stigmatising. Although family, friends and professionals highlighted that the diagnostic label is a way to facilitate understanding across stakeholder groups and help autistic individuals gain access to support, autistic self-advocates found the process of disclosing autism as a form of disability to conflict with their sense of identity, and broader terms such as 'autism spectrum' failed to capture individual strengths and weaknesses. Semantic language choices may matter less as long as the person's difficulties are clearly acknowledged, with adaptations made to meet their specific needs. Adding to a growing body of literature on terminology use in autism research and practice, we highlight that language used when describing autism should follow the autistic individual's lead, with the primary focus on communicating an individual's strengths and difficulties, to foster a sense of positive autism identity and inclusivity, and enable access to appropriate support.
... People with ASD self-report that limitations in social skills, such as difficulties working as part of teams, not getting along with others at work, and limited involvement in workplace social relationships, may explain, in part, poor employment outcomes (Hurlbutt & Chalmers, 2002) and also identify difficulties in communicating with and relating to others as one of the most negative aspects of employment (Baldwin et al., 2014). These findings suggest a need for interventions that address the core deficits of ASD in workplace settings in order to improve employment prospects and job retention of people with ASD. ...
People with autism spectrum disorder (ASD) experience impairments in social communication, which may affect their ability to develop social skills necessary for successful employment. It is unclear which types of interventions have been used to teach specific work-related social skills to people with ASD and what the overall effectiveness of those interventions has been. This article reviewed the literature on interventions targeting improvement in work-related social skills of people with ASD. Database searches yielded 1,140 articles; 14 articles met inclusion criteria. Interventions that incorporated several common elements (e.g., modeling, rehearsals, feedback) or used visually-based, technological approaches resulted in improved work-related social skills. However, high-quality research is needed, as is research that occurs in competitive, integrated workplace settings.
... There is now a robust evidence base on the health and other outcomes of autistic adults. Autistic adults without LDs experience poorer outcomes than the general population in many areas of their lives, 4,5 including mental health, particularly anxiety and depression; 6-11 social isolation; [12][13][14][15] employment; [16][17][18][19] and achieving independent living. 20 More recent evidence also points to poorer physical health outcomes and increased risk of suicide. ...
BACKGR0UNDNICE recommends each locality has a ‘Specialist Autism Team’ (SAT): an autism-specialist, community-based, multi-disciplinary service responsible for developing, coordinating and delivering care and support. It recommended this novel delivery model was evaluated. OBJECTIVES• identify services fulfilling NICE’s description of a SAT;• describe practitioner and user experiences;• investigate outcomes;• identify factors associated with outcomes;• estimate costs and investigate cost-effectiveness.DESIGNStage 1: desk-based research and survey to identify SATs. .Stage 2: • mixed methods observational study of cohort of SAT users, followed for up to two years from assessment appointment. Users either referred for ‘diagnosis and support’ (D&S) or, if already diagnosed, ‘support only’ (SO))• nested qualitative study of senior practitioners. • exploratory comparison of D&S group with a cohort accessing a diagnostic assessment service (‘diagnosis only’ (DO)). Setting (Stage 2)Nine SATs; three also provided a regional diagnostic assessment service (used to recruit DO cohort). Participants (Stage 2)• SAT cohort: n 252 (D&S =164, SO=88). • DO cohort: n=56. Thirty-seven participants (across both cohorts) recruited to the qualitative evaluation and eleven practitioners to the nested qualitative study. Main outcome measuresWHOQOL-BREF Psychological Domain, GHQ-12.Data sources Self-reported outcomes, qualitative interviews with users, and focus groups with practitioners.RESULTSStage 1Eighteen SATs were identified, all for autistic adults without LD. Services varied in their characteristics. Resources available, commissioner specifications and clinical opinion determined service design. Stage 2: Staff reported increasing referral rates without commensurate increases in funding. They called for an expansion of SATs’ consultation/supervision function and resource for low-intensity, on-going support. For the SAT cohort, there was evidence of prevention of deterioration in outcomes and positive benefit for the D&S group. Users of services with more professions involved were likely to experience better outcomes; however, this may not be considered cost-effective. Some service characteristics were not associated with outcomes, suggesting different structural/organisational models are acceptable. Findings suggests one-to-one work for mental health problems was cost-effective and an episodic approach to delivering care plans more cost-effective than managed care. Qualitative findings generally align with quantitative findings; however, users consistently connected a managed-care approach to supporting improvement in outcomes.For the DO cohort, no changes in mental health outcomes at T3 were observed. Interviews, comparing D&S and DO individuals, suggests extended psychoeducation post-diagnosis impacts immediate and longer-term adjustment. LIMITATIONSSample size prohibited investigating association between some service characteristics and outcomes. Comparison of DO cohort and D&S group under-powered. Economic evaluation limited by incomplete costs data.CONCLUSIONS
The study provides first evidence on the implementation of SATs. There is some evidence of benefit for this model of care. Service characteristics which may affect outcomes, costs and cost-effectiveness were identified. Finding suggest extended psychoeducation post-diagnosis is a critical element of SAT provision. FUTURE WORKWe recommend:• comparative evaluation of SATs vs diagnostic-only provision • evaluation of models of providing consultation/supervision and low-intensity support.
... This is changing, with special health authorities (e.g., NICE 2012) advocating for a person-centred approach: recognizing the need to work in partnership with autistic people, and considering individual needs and preferences with respect to service provision. This positive and important development reflects how autistic adults are experts by experience, often able to provide information about what works best for them (Gotham et al. 2015, Hurlbutt andChalmers 2002). Yet, the heterogeneity of this population and their underlying commonality of communication differences pose challenges to ensuring meaningful involvement in service provision. ...
Background
Autistic people require varying levels of support at different stages of their lives. Yet, the healthcare needs of autistic adults are largely unmet. Speech and language therapy (SLT) is one healthcare service that has an important role in supporting autistic people: both with initial diagnosis, and with the ongoing support needed to navigate different communicative challenges across the lifespan. Despite recommendations for such support, currently there is no clear SLT pathway for autistic adults, and a lack of established approaches to support autistic adults’ speech, language and communication needs.
Aims
To seek autistic adults’ views on (1) their communication skills and support needs; (2) the type of support SLT could offer; and (3) how such support could be provided.
Methods & Procedures
A total of 18 autistic adults were interviewed in their preferred mode of communication (e.g., face to face, phone call, text messaging, e‐mail), expressing their views on their communication skills and needs. Interview data were analysed using thematic analysis.
Outcomes & Results
Autistic adults presented complex views on communication, identifying the benefits of communication, while also emphasizing the significant negative impact that communication difficulties can have on their everyday lives. Identifying a range of internal (e.g., personal feelings) and external (e.g., the communication partner) factors, they highlighted the need for support at both individual levels (for specific life situations) and broader societal levels (to increase awareness and acceptance of communication difficulties).
Conclusions & Implications
Considering the negative impact that communication difficulties can have for autistic adults, a need for support was emphasized. Despite recognition of this need within current legislation (in the UK) and positive steps toward providing support, more needs to be done. As experts in supporting individuals with communication difficulties, speech and language therapists could play a pivotal role in providing support at an individual level, as well as increasing awareness of communication differences more widely.
What this paper adds
What is already known on this subject
• There is a growing population of autistic adults with unmet support needs. A core characteristic of autism is difficulty with neurotypical social communication and interaction, which persists into adulthood and impacts across various life domains.
What this paper adds to existing knowledge
• Autistic adults outlined the types of communication difficulties they experience, and how these can negatively impact on physical and mental health. Results highlight how these difficulties are not just rooted within the person themselves but can be influenced by external factors (e.g., the environment and the communication partner).
What are the potential or actual clinical implications of this work?
• Some autistic adults may benefit from direct support from SLT services. However, increased awareness and respect for communication differences at a broader societal level is also needed. Speech and language therapists can play an important role in increasing this level of awareness, positively highlighting differences in communication and ways to support people with communication difficulties/differences.
This thesis explores a humanistic intervention called Gentle Teaching and how a
special residential school has attempted to embed this into its school culture. This
thesis explores a range of concepts and as such a conceptual framework has been
created to link each of these areas together. The conceptual framework is based upon
Gentle Teaching, School Culture and Symbolic Interaction. Symbolic Interaction has
been employed as a lens to explore the concepts of truth through the understanding
of various factors that influence the understanding that people how regarding the
meaning objects, interactions and words have for us. This is true still for the unique
pupils within the school who express their own understanding of the school culture
and what this feels like to them.
This thesis has a series of sub-research questions to ascertain if Gentle Teaching is a
natural ability or if this can be taught/learned, it also seeks to identify if the recipients
of Gentle Teaching are aware of the process and finally, how Gentle Teaching can be
embedded within a school culture. A qualitative methodological approach is
employed to gather data from adult staff participants and the views and opinions from
the students within the school. This thesis contributes to a modern exploration of the
Gentle Teaching pedagogy. This thesis also gains insight into the views and opinions
of an often overlooked and marginalised group of students and offers an illustration
of what Gentle Teaching can offer to other schools as both a pedagogical and
behavioural approach that could become an alternative to less humanistic
approaches.
In October 2019, two months after my 40th birthday, I received a formal diagnosis that I was autistic. I joined all those other thousands of late-diagnosed women in the UK, previously undiagnosed and overlooked. I had spent my years being mislabelled, misunderstood, or misinterpreted. I dealt with feelings I did not understand and sensory experiences I could not bear to process. I felt a need to cope with the ‘normal’ aspects of everyday life. I never knew why I experienced these troubles and troubling feelings for all those years. The discourse surrounding autism is referred to as the cost of camouflaging. In this article, I critically discuss predominant discourses on autism and gender as I reflect on my auto/biographical troubles from my newly confirmed, acquired identity and perspective as an autistic, now 40-something-year-old woman.
Autism disabilities primarily came in the form of social interaction difficulties, as well as specific interests towards any particular subject. Autism in adults is a relatively unexplored territory. It has been observed that autism is a controversial topic in society as there seems to be lacking in understanding towards them. Documentary is a form of video that captures the real-life aspect of a subject and capable of attracting audiences in order to convey a message. The purpose of this research is to spread awareness among people about the truth of autistic people and quell the negative perception towards autistic people through interactive documentary. Another aim of the research to investigate the effectiveness of using an interactive documentary as ways of spreading awareness about autism in adults. The methodology adapted in this research is ADDIE model which comprises of Analysis, Design, Development, Implementation and Evaluation phase. A user testing was carried out among target audience to identify if this study has accomplished its objectives. Based on the feedbacks, it has shown that the target audience understand the message that are being conveyed by the interactive documentary and was able to spread awareness about autistic adults.
Lay abstract:
Sensory atypicalities are very common among autistic people and are integrated in several theories and explanatory models of autism. Qualitative studies have explored these singular sensory experiences from the perspectives of autistic people themselves. This article gathers all these qualitative studies and provides original findings regarding the everyday sensory experience of autistic people, that is, around four dimensions - physical, emotional, relational and social - experienced holistically, as inseparable, and not hierarchically or in terms of cause and effect. Adopting this holistic view could improve the adaptation of the sensory environment in health care facilities and the training of professionals around this specific issue.
Purpose
Individuals with an Autism Spectrum Disorder (ASD) diagnosis often desire to be useful to society and may have the ability to work. Unfortunately, in Poland as in other countries, most remain unemployed. The purpose of this paper is to determine the factors that make gaining and retaining employment difficult for people with autism from their perspective.
Design/methodology/approach
This paper presents a qualitative research synthesis, that explored experiences of 15 individuals with autism regarding the process of seeking and maintaining employment. In-depth interviews were conducted with each study participant, and four discussion panels were held with small groups.
Findings
The difficulties described by the study participants included lack of detailed information, anxiety, high stress levels and overcommitment. Some of them also reported that they were unable to find out the reasons for misunderstanding or dissatisfaction on the part of their employers.
Social implications
The paper emphasizes the need to increase public awareness and reliable knowledge about autism spectrum disorders.
Originality/value
The paper draws conclusions regarding common difficulties from the perspective of individuals with autism. It shows how features associated with autism can be related to specific problems at work or during the process of looking for it. It also indicates changes that should be made in the employers' approach to help people with autism gain and retain employment.
Spanish:
Estudios epidemiológicos indican que el Trastorno del Espectro Autista (TEA) es diagnosticado con mayor frecuen-cia en varones que en féminas. Investigadores han propuesto que es posible que esto se deba a: subestimación y fallos en la detección del autismo en las féminas, camuflaje de síntomas en las féminas, métodos de evaluación utilizados y/o a sesgos por parte de los profesionales al diagnosticar, entre otros. Este trabajo se propone analizar aspectos relacionados a la presentación del autismo en féminas, explorar condiciones comórbidas en esta población, y examinar los retos asociados a los procedimientos diagnósticos.
English:
Epidemiological studies have shown that Autism Spectrum Disorder (ASD) is diagnosed more frequently in males than females. Researchers have suggested that these differences could be the result of several factors, including: camouflaging of symptoms in females, diagnostician biases or failure to detect ASD symptoms in females, evalua-tion methods used, among others. The purpose of this review is to present and analyze literature related to the presentation of ASD in females, explore comorbidity with other diagnoses and examine the challenges associated with current diagnostic procedures.
Social science literature has documented how the concept of diagnosis can be seen as an interactive process, imbued with uncertainty and contradiction, which undermines a straightforward notion of diagnosis as a way to identify underlying biological problems that cause disease. We contribute to this body of work by examining the process of resolving contradiction in autism diagnosis for adults and adolescents. Autism is a useful case study as diagnosis can be a complex and protracted process due to the heterogeneity of symptoms and the necessity to interpret behaviours that may be ambiguous. We audio-recorded and transcribed 18 specialist clinical assessment meetings in four teams in England, covering 88 cases in two adult, one child and one adolescent (14+) setting. We undertook a qualitative analysis of discursive processes and narrative case-building structure utilised by clinicians to counteract contradiction.We identified a three-part interactional pattern which allows clinicians to forward evidence for and against a diagnosis, facilitates their collaborative decision-making process and enables them to build a plausible narrative which accounts for the diagnostic decision. Pragmatism was found to operate as a strategy to help assign diagnosis within a condition which, diagnostically, is permeated by uncertainty and contradiction. Resolution of contradiction from different aspects of the assessment serves to create a narratively-coherent, intelligible clinical entity that is autism.
This chapter presents the narratives of some people with autistic spectrum disorders (also known as autism spectrum conditions) as well as those of their families and carers. It describes the history and development of the diagnostic concept of autistic spectrum disorders and how the clinical features impact on daily life and their families. It examines the different stages through which people progress, based on their contact with services – before diagnosis, at the time of diagnosis and their life since then. The chapter concludes with a personal account of all these stages.
The use of natural supports in supported employment service delivery has emerged as a widespread practice of supported employment providers. Though several strategies for using natural supports have evolved, detailed descriptions of the roles of the employment specialist, as well as nontraditional support resources, such as family members, friends, and co-workers, are lacking. The present investigation focused on the activities of one program's initial efforts to document the activities of employment specialists as well as nontraditional support providers in a supported employment setting emphasizing natural supports.
In this article, two young women with severe mental retardation obtained competitive employment and were supported through the use of an employment specialist and coworkers. Although neither woman had a history of work in paid employment, both were at a transition stage from public school and needed unique specialized assistance to procure and maintain employment. There are thousands of other women with severe mental disabilities who could benefit from the supports that were provided to these two individuals in the workplace. This article provides the process and design of such supports.
The purpose of this study was to determine how a group of adults with autism perceived one another's interpersonal attributes and popularity. Five female and 11 male high-functioning autistic adults, 18-45 years old, participated in a social skills group together for several years. A sociogram and a questionnaire designed to determine perceptions of best looking, most athletic, and most humorous group members were administered to group members and nonhandicapped group leaders. Independent assessments of intelligence and empathy also were taken. Results indicated that perceived attractiveness and sense of humor were correlated with popularity, but group members' assessments of these attributes differed from those of the nonhandicapped group leaders. Differences between group members and group leaders responses and the implications of the results of the study for social skills training with high-functioning autistic adolescents and adults are discussed.
This study examined the effectiveness of a social skills training program for normal-IQ adolescents with autism. Five boys participated in the 4 1/2-month treatment condition; four boys matched on age, IQ, and severity of autism constituted the no-treatment control group. In addition to teaching specific interactional and conversational skills, the training program provided explicit and systematic instruction in the underlying social-cognitive principles necessary to infer the mental states of others (i.e., theory of mind). Pre- and post-intervention assessment demonstrated meaningful change in the treatment group's performance on several false belief tasks, but no improvement in the control sample. No changes, however, were demonstrated on general parent and teacher ratings of social competence for either group.
Social skills training with autistic children
- J Matson
- N Swiezy