Autism Experience Research Articles

A Systematic Review of Sensory Interventions for Children With Autism: The Effects on Attention and Self-Regulation

Abstract Date Presented 04/01/2022 Many children with autism experience attention deficits that limit their participation in daily occupations. Sensory interventions are commonly used to improve self-regulation and attention in children with autism. This systematic review summarizes current sensory interventions used by OT practitioners and determines the quality of evidence for these interventions. This analysis allows practitioners to use best evidence when choosing intervention strategies for their clients. Primary Author and Speaker: Nicole Roberge Contributing Authors: Jewel Elias Crasta

Access for autistic student-actors: interrogating the role of empathy within actor-training methods

In this paper I, as an autistic actor-trainer who was once an autistic student-actor, explore some of the access issues faced by autistic student-actors. I look at the practices commonly taught on actor-training programmes, and uncover what exclusionary ‘dominant narratives’ they hold, and why these create issues for autistic students. This paper focuses specifically on the example of empathy, asking how it is used within the practices of Stanislavski and Meisner, among others. This research moves away from the deficit model of autism. Instead, I look to autistic experience – my own and that of others – to investigate what acknowledging, welcoming, and maximising upon these experiences can contribute to these actor-training practices. The result is an example adaptation, where I reframe actor-training exercises to be more accessible for autistic students and consider what benefits these changes might have for all actors within the space. This paper is timely as it follows on from other research into training actors with dyslexia and dyspraxia, and moves to address the absence of writing on training autistic actors. By positioning itself within the neurodiversity paradigm it questions what contributions autistic experience could make to the field of actor-training, if disabling barriers were removed.

The autistic experience of homelessness: Implications from a narrative enquiry.

Recent research suggests many autistic people experience homelessness. However, little is known about the types of homelessness autistic people experience and what barriers autistic people face when trying to exit homelessness. This study involved gathering life stories of autistic people who had experienced homelessness. Ten autistic participants talked about their pathways through homelessness and the difficulties they had in accessing support. After first becoming homeless, participants tended to experience rough sleeping and sofa surfing. When participants approached housing and homelessness services, they were often told they were not eligible for support. This could happen when support workers were not aware of autism, or when autism was not considered 'severe' enough. Overcrowding, confrontation and lack of control over routine and environment were particular issues for participants when they entered homelessness hostels. Some participants chose to sleep on the streets rather than stay in environments which increased social anxiety and sensory difficulties. This study discusses ways in which homelessness and housing services can increase accessibility and improve engagement for autistic people. It is important to increase awareness of autism while understanding that autistic people who experience homelessness may have complex needs. In addition, services need to listen to autistic people with lived experience of homelessness to decide what changes will have the most impact.

Integrating the Autistic Experience Into Existing Models for Disordered Eating.

Integrating the Autistic Experience Into Existing Models for Disordered Eating.

Autistic Adult Perspectives on Occupational Therapy for Autistic Children and Youth.

The Autistic community values neurodiversity-positive approaches rather than behavioral interventions for Autistic children; however, little is known about what that would look like in occupational therapy. Frequently, researchers seek parent perspectives for understanding Autistic children's preferences, while to date insufficient attention has been paid to Autistic adults as valuable informants on the Autistic experience of Autistic children. The objective of the study was to understand Autistic adult perspectives on pediatric occupational therapy for Autistic children. We sought and thematically analyzed data from a large Facebook group and an occupational therapy podcast on Autistic values, needs, and experiences in pediatric occupational therapy. Participants described wanting therapy that supported Autistic identities rather than trying to "fix" children, changing environments or tasks to promote participation, and setting goals that address self-advocacy and autonomy. Occupational therapy practitioners should critically reflect on their practice's alignment with Autistic values and start to shift their practice as needed.

Attitudes and Experience of Autism and Learning disability(LD): A Survey of Mental Healthcare Staff

AimsTo establish a baseline of staff experience and confidence in autism/LD. To inform how we deliver training going forward. To collect good practice examples of reasonable adjustments. To ascertain knowledge about the appropriate recording for information related to Autism/LDMethodsAll clinical and non-clinical staff of Leeds &York Partnership Foundation Trust(LYPFT), Bradford District Care Foundation Trust(BDCFT), South West Yorkshire Foundation Trust(SWYFT), Voluntary sectors, Local authority and Leeds Community Health Care NHS Trust (LCH)were invited to take part in the anonymised “Staff Autism and LD Survey” through the various trust wide email bulletins. Smart Survey was the platform used. It took about 5–7 minutes to complete, and the survey period was from 21/09/21 to 01/11/21ResultsA total of 225 members of staff across six organisations took part in the survey.76% (170) were from LYPFT, 16(7%) from Voluntary Sector Organisations, 6%(14) from Local Authority and 3% from LCH 3%(7), Missing 14(6%), BDCFT 1%(2), SWYPFT 1%(2)The majority were nurses 23% (52), followed by psychologists 10% (22).18% (41) stated they would be interested in becoming an autism champion for their team/service.Although 89% (200) had heard of the term “reasonable adjustments”, 36% (81) had never seen a ‘hospital passport’ for an autistic or learning-disabled service user.Only 24 (11%) said they knew where to record reasonable adjustments on the electronic patient recordIn general staff were marginally more confident in making reasonable adjustments for people with autism than those with LDMajority of staff preferred : face-to-face training, followed by e-learning and then videocall.ConclusionGenerally, respondents reported feeling neutral or confident with respect to their confidence in recognising, diagnosing, and working with patients with autism. The number of staff that have indicated interest at becoming Autism champions is a testament to the growing interest and increasing awareness about Autism.Regarding learning disability, respondents generally reported feeling neutral or confident across the three areas of recognising moderate to severe learning disability, recognising mild learning disability, and managing/treating mental health problems in service users with learning disability.The very high number of staff (89%) that have heard of the term “reasonable adjustments” is quite commendable and is useful to know when planning what level to ‘pitch’ training in this area.It is interesting however that staff feel more confident at making reasonable adjustments for people with Autism, rather than for LD. One wonders whether it is due to the increasing media publicity about Autism.

Psychosocial Burden of Mothers’ Care of Children with Autism Attending Federal Neuro-Psychiatric Hospital Yaba Nigeria

Autism spectrum disorder (ASD), or simply autism, occupies an extreme position among childhood pathologies due to its severity, duration, and impact on the family. This descriptive study assessed the psychosocial burden of care on 60 mothers of children with childhood autism. The instrument consisted of socio-demographic characteristics, 12-item General Health Questionnaire (GHQ-12), and the Zarit Caregiver Burden Interview (ZCGI). Data were analyzed using SPSS version 23. Results indicated a significantly high level of psychological distress (51.8%) among mother of children with autism, and (30%) thirty percent of mothers of children with autism had a low burden. Bivariate analysis revealed factors that were associated with psychological distress in mother of these children were the presence of social type of impairments and a high number of impairment in the child having to cut down or give up work and a high burden score on these women believed to be a spillover from the care burden. Results also showed the number of impairments at various periods: 12 months (51.79%), 6-12 months (30.36%), and less than 6 months are (17.86%). Mothers’ employment rate was cut down to 51.9%, while 25.9% gave up their job completely. These were significantly and independently associated with psychological distress. Conclusively, the study revealed that mothers of children with autism experience significant higher levels of burden. Hence, an urgent need for the implementation of intervention programmes to reduce the burden of care among this group of mothers in Nigeria with social support and governmental assistance and approaches.

Hyper-Sensitivity to Pitch and Poorer Prosody Processing in Adults With Autism: An ERP Study.

Individuals with autism typically experience a range of symptoms, including abnormal sensory sensitivities. However, there are conflicting reports on the sensory profiles that characterize the sensory experience in autism that often depend on the type of stimulus. Here, we examine early auditory processing to simple changes in pitch and later auditory processing of more complex emotional utterances. We measured electroencephalography in 24 adults with autism and 28 controls. First, tones (1046.5Hz/C6, 1108.7Hz/C#6, or 1244.5Hz/D#6) were repeated three times or nine times before the pitch changed. Second, utterances of delight or frustration were repeated three or six times before the emotion changed. In response to the simple pitched tones, the autism group exhibited larger mismatch negativity (MMN) after nine standards compared to controls and produced greater trial-to-trial variability (TTV). In response to the prosodic utterances, the autism group showed smaller P3 responses when delight changed to frustration compared to controls. There was no significant correlation between ERPs to pitch and ERPs to prosody. Together, this suggests that early auditory processing is hyper-sensitive in autism whereas later processing of prosodic information is hypo-sensitive. The impact the different sensory profiles have on perceptual experience in autism may be key to identifying behavioral treatments to reduce symptoms.

Autism and Trans Identity

Much discussion of the documented link between autism and transgender identity focuses on identifying a reason behind this link, with the implication that if a cause were to be identified, this would justify disregarding or questioning the trans identity of autistic people to a greater extent than is already the case. I focus instead on the commonalities between the trans and autistic experiences, including pathologisation, medical gatekeeping and a lack of representation in public discourse about both autism and trans identity, which tend to be dominated by non-autistic and cisgender people respectively.

Elevated symptoms of executive dysfunction predict lower adaptive functioning in 3-year-olds with autism spectrum disorder.

Executive functioning (EF) deficits co-occur frequently with autism spectrum disorder (ASD) and have a long-term detrimental impact on quality of life of children and their families. Timely identification of risk for EF vulnerabilities may hasten access to early intervention and alleviate their long-term consequences. This study examines (1) if EF deficits are elevated in toddlers with ASD compared to nonautistic siblings of children with ASD, typically developing (TYP) toddlers, and toddlers with atypical developmental presentation; and (2) if EF deficits have a detrimental effect on adaptive functioning in ASD. Participants were recruited between September 2014 and October 2019 and included 73 toddlers with ASD, 33 nonautistic siblings of children with ASD, 35 toddlers with atypical development, and 28 TYP toddlers matched on chronological age (M=39.01 months, SD=3.11). EF deficits were measured using the BRIEF-P; adaptive skills were measured using the VABS-II. Whenever appropriate, analyses were controlled for MSEL verbal and nonverbal developmental quotient, ADOS-2 autism severity scores, and sex. Analyses revealed that toddlers with ASD exhibited elevated BRIEF-P scores across all domains compared to each of the three comparison groups. Higher BRIEF-P scores were associated with lower adaptive social, communication, and daily living skills while controlling for symptom severity, verbal and nonverbal functioning, and sex. In conclusion, marked vulnerabilities in EF are already present in 3-year-old toddlers with ASD and are predictive of the level of adaptive functioning in ASD. EF vulnerabilities in toddlers should be targeted for intervention to improve long-term outcomes in ASD. LAY SUMMARY: Many children with autism experience vulnerabilities in executive functioning (EF), which may include challenges with inhibition, working memory, cognitive flexibility, and planning. The study shows that these vulnerabilities can already be detected at age three and that their presence is linked with lower social, communication, and daily living skills. Screening children with ASD for EF challenges and helping those who have difficulties may improve their long-term outcomes.

Autism in science - 'through the looking glass' and the role of empathy in the equation.

Autism in science - 'through the looking glass' and the role of empathy in the equation.

Exploring Extracurricular Clubs for Building Social Competence of Students With Autism.

Individuals with autism experience challenges in social communication that directly impacts in-school and post-school performance. A growing number of these students are taught in general education settings in public high schools, where creating opportunities for practice of social communication skills is frequently a challenge. This exploratory, mixed methods pilot investigation explores existing and potential opportunities for high school students with autism to practice 21st century skills, including communication, in extracurricular club environments. Findings indicate that extracurricular club settings are rich environments in which all participating students, including those with autism, have opportunities to practice critical 21st century skills in a context related to their interests.

"We couldn't think in the box if we tried. We can't even find the damn box": A qualitative study of the lived experiences of autistic adults and relatives of autistic adults.

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.

Measuring the Wrong Thing the Right Way? Time to Rethink Autism Research Tools.

Awareness and understanding of autism are increasing, sometimes in small incremental steps and sometimes through paradigm shifts. Much of this is driven by autistic advocates, whose voices are increasingly recognized as experts in their own lived experiences. The growing presence of autistic people in autism research-as participants, advisors, and (co)researchers-has brought about changes in the quality and relevance of autism research. We are seeing more studies by autistic autism researchers, more studies on issues of importance to autistic people, and more studies utilizing methodologies that resonate with autistic people. However, there remains a reliance on measures that are technically "valid" and "reliable" rather than relevant. As long as this is the case, we will continue to see studies published that "explain autism" in ways that do not reflect autistic experiences. Autism research is still making incremental changes and it is time for a paradigm shift.

"A Group of Fellow Travellers Who Understand": Interviews With Autistic People About Post-diagnostic Peer Support in Adulthood.

Receiving a diagnosis of autism in adulthood can be a life changing event, impacting identity, relationships, and mental health. A lack of post-diagnostic support has been highlighted by autistic adults, their allies, clinicians, and service providers. It can be a source of distress for autistic adults, reinforcing feelings of social isolation and rejection. Peer support could be a cost-effective, flexible, and sustainable model to provide community-based support for autistic adults. However, there is little research on the value of peer support, despite calls from the autistic community. This qualitative study explored autistic experiences and needs post-diagnosis, identifying specific ways that peer support may benefit them, and exploring the limitations of peer support. Twelve autistic adults who had all received an autism diagnosis in adulthood completed a semi-structured interview focussing on the diagnostic experience, post-diagnostic support needed and provided, engagement with the autistic community, and post-diagnostic peer support. Thematic analysis of interview transcripts resulted in four themes: (1) Mismatch in support needed and provided; (2) Community connection; (3) Flexible and personalised support; and (4) Sustainability. Participants indicated that peer support may be a useful mechanism to support autistic adults’ post-diagnosis and offers unique opportunities not available through other support channels. Though informal peer support exists, it could be more sustainable and effective if well-supported and funded.

The Development of Psycho-educational Module of Dental Management for Primary Caregivers and Teachers of Autism Children: A Qualitative Study in Special Region of Yogyakarta, Indonesia

BACKGROUND: The prevalence of autism increases globally and in Indonesia. Children with autism experience intellectual, behavioral, and anxiety disorders, including fear of dental care. These children often experience difficulty brushing teeth and are reluctant to visit dental care facilities. The poor oral and dental cleanness in children with autism may increase the risk of dental and oral diseases such as periodontal disease and caries. One preventive effort is providing psycho-education to the child and the people surrounding them (parents or caretaker and teacher). Psycho-education modules should be adequate and based on the client’s needs. AIM: The aim of the study was to explore the contents of the psycho-educational module as a guide for primary caregivers and teachers to prevent dental and oral health problems of the child with autism. METHODS: We conducted a qualitative study using focus group discussions (FGD) and in-depth interviews from 12 November to 26 December 2020. This study involved 11 primary caregivers and 14 teachers of the autism-special school in Yogyakarta, Indonesia. The FGD and in-depth interviews were recorded and verbatim transcripted and were analyzed by thematic content analysis. RESULTS: We found three topics required to maintain the dental and oral health of a child with autism, namely: Management of behavior in autistic children, oral-dental treatment, and nutrition management in dental-oral health in autistic children. Available materials used practical and straightforward language. CONCLUSION: The study findings provide an important information as a new approach contained in the module on maintaining oral health to improve the health status of autistic children.

The lived experience of autistic teachers: a review of the literature

ABSTRACT To date, discussion regarding autism in education has been primarily concerned with autistic students, and research usually relates to pedagogical practices that can be implemented by neurotypical teachers to support them. Seldom does the conversation around autism in the classroom consider autistic teachers, which automatically negates lived experience which could provide critical insights into inclusive education. This review examines literature which is concerned with the lived experiences of autistic teachers in education settings from early childhood to high school, with the purpose of illuminating the understanding of autism in schools. This study finds that autistic teachers are more prevalent than traditional ideas about education have suggested, with many teachers deciding to hide their autism due to negative stereotypes and discriminatory behaviour. This study focuses on the range of strengths and challenges that autistic teachers experience and highlights a gap in the literature exploring lived experience of autistic teachers, conducted by autistic researchers. The study concludes that autistic voices are essential for addressing disconnects between inclusive education theory and practice; a disconnect which creates barriers to success for autistic people in society.

Autism through cinema: co-creation and the unmaking of knowledge

This article discusses the methodological approach of a collaborative research project situated at the intersection of autism and cinema. The Autism through Cinema project stages an encounter between the titular terms in order to challenge the neurotypical assumptions that underpin cinema as an apparatus, and to mobilise new cinematic potentialities. Structured over a period of four years, the project undertakes a series of collaborations between different disciplines (Film Archaeology, Film Practice, History, Psychology, and Sociology) and between autistic and non-autistic thinkers and makers, as well as in partnership with institutions external to academia. Methodologically the motivation for the project is to reverse engineer research methods used historically in film history, film making and psychiatry to produce inversions of perception, power and classification, and furthermore to explore what kind of cinema is possible if it is reconfigured through autistic experience.

Mental health screening in pediatric primary care for children with autism.

Children with autism experience high rates of co-occurring mental health conditions like challenging behaviors and anxiety. However, these co-occurring mental health needs are often not identified when they first become problematic. Pediatricians and their care staff are in a good position to identify mental health needs early and support families to connect to needed services. This study describes a project focused on mental health screening for children with autism in pediatric primary care clinics. Over half of eligible patients were screened using the Pediatric Symptom Checklist-17. Many children with autism had clinically elevated scores, suggesting the need for mental health assessment or services. In particular, children with positive screens had clinical elevations on the challenging behavior and attention subscales of the Pediatric Symptom Checklist-17. This finding is consistent with typical trends in co-occurring challenging behavior presentations in children with autism. Mental health screening in primary care is feasible and offers a promising opportunity to identify co-occurring mental health needs for children with autism early. Screening rates varied between clinics, suggesting tailored to improve routine screening in pediatric primary care for children with autism.

Disruption to the Core Self in Autism, and Its Care

ABSTRACT This article offers a neuroscientific explanation of the experience of autism as a disruption to the embodied experience of the Core Self. It recognizes human experience is integrative by nature. Attending to the insights of Penelope Dunbar (Pum), who has lived with autism for decades, we explore an affective neuroscience understanding of autistic experience as a disruption to embodiment and coherence of the Core Self, and how to work creatively with its impulses for health and personal development. Pum describes her autistic disruptions to the intra-personal coherence of her basic states of being, moving-with-feeling in self-awareness, and how this disturbance to her internal subjective coherence of mind challenges her capacity to self-regulate arousal, and communicate with others. By examination of the source of her problems in childhood and ways of working with them, Pum has clarified fundamental elements in the development of her capacity to regulate self-care in creative efforts that facilitate both affective embodiment and sensory-motor coherence in growth of understanding in her mind and body. With her advice, we explore how current neurobiological insights in autism as a disruption to the regulation of affective embodiment and sensory-motor integration leads to new recommendations for therapeutic care to relieve autistic distress and restricted modes of being. Although particular to her circumstances and cultivated habits of autistic expression, this analysis offers insight into the fundamental nature of autism, and ways of positive working with one’s autism for creative gains.