Autism Knowledge Research Articles

“There is beauty in diversity in all areas of life including neurological diversity” (Bella): A mixed method study into how new thoughts on neurodiversity are influencing psychotherapists’ practice

The term ‘neurodiversity’ describes the idea that, throughout the human population, different brain developments and structures exist. Neuronal variances, such as autism, are not seen as disorders but as variations, different from the neurotypical brain. Instead of being considered ill and cure-worthy, neurodiverse people should be included and integrated into society. The aim of this study was to explore psychotherapists’ knowledge of current trends in the understanding of autistic people i.e. the Neurodiversity movement. It wanted to identify the sources psychotherapists gained their knowledge of autism and whether terminology impacts on psychotherapists’ approach to therapy. Data was collected using a mixed method online questionnaire and analysed using thematic analysis. The results showed that participants were acutely aware of the potential negative impact of language and terminology on ‘the other’, including shame and judgement. Participants explored the purpose and usefulness of labelling and how using client-preferred terminology was helpful. Most participants felt that further knowledge and training in neurodiversity would benefit their practice. Implications for psychotherapy practice and the profession are discussed, including identifying sources of knowledge and training on neurodiversity. The opportunities, and barriers, needed for psychotherapists to support the autistic community in positive self-understanding and advocating are considered.

Sex/gender differences in children with autism spectrum disorder: A brief overview on epidemiology, symptom profile, and neuroanatomy.

Autism spectrum disorders (ASD) are a heterogeneous group of neurodevelopmentalconditions whose shared core features are impairments in social interaction and communication as well as restricted patterns of behavior, interests, and activities. The significant and consistent male preponderance in ASD prevalence has historically affected the scientific knowledge of autism in females as regards, inter alia, the clinical presentation, the genetic architecture, and the structural brain underpinnings. Indeed, females with ASD are under-investigated as samples recruited for clinical research typically reflect the strong male bias of the disorder. In the last years, the study of the various aspects of sex/gender (s/g) differences in ASD is gaining increased clinical and research interest resulting in a growing number of investigations on this topic. Here, I review and discuss evidence emerged from epidemiological, clinical, and neuroimaging studies in the last decade focusing on s/g differences in children with ASD. These studies are the prerequisites for the development of assessment and treatment practices which take into consideration s/g differences in ASD. Ultimately, a better understanding of s/g differences aims at improving healthcare for both ASD males and females.

Spotted around the web: Autism knowledge in Russia, brain imaging peer review, neuro-advocacy

Spotted around the web: Autism knowledge in Russia, brain imaging peer review, neuro-advocacy

Understanding Parent's Knowledge and Perception About Autism Spectrum Disorder (ASD) in the City of Jeddah, Kingdom of Saudi Arabia

Background Autism spectrum disorder (ASD) has shown a dramatic rise in the past few years. It is one of the most common chronic neurodevelopmental disorders with strong genetic basis. As patients’ outcomes are implicated by their parents’ knowledge and perception about ASD. This study aimed to assess the knowledge and perception of childhood autism among parents in Jeddah, Saudi Arabia. Methodology This is a descriptive cross-sectional study that targeted all parents with at least one child in Jeddah, Saudi Arabia in 2020. An electronic self-administered questionnaire was distributed online. A total of 413 participants were included. To describe our study participants, we used frequencies for the categorical variables. Chi-square test was used to determine the presence of associations. Results A total of 413 respondents were included, most of them were females. The mean age of the sample was (41±11.35). After assessing the knowledge about ASD among our sample of patients, most of the participants showed good level of knowledge asthe majority were able to identify ASDs’ early symptoms and believe that early identification of the disease will improve the therapeutic outcome. The perception was also acceptable in our sample since more than half of the participants were able to define ASD and were aware of the possibility of early diagnosis. It was also remarkable that most of the participants in our sample were able to identify the features of a child with ASD. Conclusion The study demonstrates an acceptable fund of knowledge and perception among parents regarding facts and myths about ASD among parents in Jeddah, Saudi Arabia. Males answered better in both sections covering knowledge and perception about ASD. We also found out that the level of education had a significant positive influence on the level of knowledge and perception.

Awareness and Knowledge about Childhood Autism among Family Medicine Residents in Al Madinah Region in Saudi Arabia, 2020

Background: Autism spectrum disorder (ASD) refers to a range of conditions characterized by some degree of impaired social behavior, communication and language, and a narrow range of interests and activities that are both unique to the individual and carried out repetitively. Objective: To assess knowledge of Family Medicine residents in Al Madinah Region regarding childhood autism. Methods: This cross-sectional study was conducted to assess knowledge of 103 family medicine residents about childhood autism in Al Madinah Region, Saudi Arabia. A structured self-administered web-based Healthcare Workers (KCAHW) Questionnaire was used to assess knowledge of childhood autism among participant residents. Results: Residents’ total score (Mean±SD) was 13.18±2.80 (out of 19, 69.4%). The highest attained mean scores were for the first and second domains (6.36±1.64, 79.5% and 0.78±0.42, 78%, respectively), while the lowest was for the fourth domain (2.62±1.10, out of 6, 43.7%). Highest mean knowledge scores among participants were among those aged 35-39 years (13.33±0.58). However, knowledge scores did not differ significantly according to residents’ age groups. Male residents had significantly lower knowledge scores than females (12.56±2.53 and 14.21±2.95, respectively, p=0.003). Mean knowledge scores were highest among R4 residents (13.66±2.91). However, knowledge scores did not differ significantly according to residents’ training levels. Participants in Yanbu Residency Program had significantly lower mean knowledge scores than those in AL Madinah (12.26±2.70 and 13.45±2.79, respectively). However, knowledge scores did not differ significantly according to residency programs. Mean knowledge scores about autism did not differ significantly according to attending workshops or conferences about autism. Conclusion: Knowledge of family medicine residents regarding childhood autism is suboptimal. Correlates of KCA may help in selection of healthcare workers who would best provide health education and management for caregivers of children with autism. It is important to update the knowledge gaps of healthcare workers who have limited knowledge regarding childhood autism and to train them to be able to provide healthcare service that would ensure early diagnosis and interventions for management of autism. Key words: Autism spectrum disorder, children, Family Medicine, Knowledge, Saudi Arabia.

A Critical Realist Approach on Autism: Ontological and Epistemological Implications for Knowledge Production in Autism Research.

The ontological status of autism has been a subject of considerable debate and philosophical approaches of it have been recent and sparse. On the one hand, from its conception, autism has been historically heavily located in the fields of psychiatry, psychology and neuroscience, which often assume access to an “objective,” neutral and infallible reality that is external to the research process and is based on the autistic person’s biology and behavioural characteristics, which can be scientifically observed and studied. On the other, proponents of the neurodiversity movement argue against medicalised and pathologising approaches to autism and toward approaches that consider social constructions of autism and relations of power. The Critical Realist philosophy can help reconcile the two positions. Critical Realism conceptualises objectivity as a statement about an object, rather than a neutral and infallible reality. Consequently, Critical Realism suggests that access to reality can only occur through fallible theories. It also suggests that effective theorising goes beyond appearances and phenomena and may even contradict them, which can help challenge dominant behaviourist approaches on autism. I then explore how the tenets of Critical Realism can help strengthen autistic-led theories of autism, the arguments they make, as well as how they support the importance of community autism knowledge. Finally, I present how Critical Realism’s approach to knowledge itself as well as the process of knowledge creation can strengthen autistic theorising, autistic participation in autism research and autistic emancipation. In the last part of the article, I explore how the concepts of Critical Realism apply to autistic sociability. I start with the debate between structure and agency, how Critical Realism reconciles this debate and the implications for autistic emancipation and autism research. I then present Critical Realism’s process of critique and explanation, how they connect to human emancipation and how they can lead to impactful change in autism research by requiring clear links from research to practice, enhancing practices with strong theoretical underpinnings and thus aiding the aims of emancipatory autism research.

Brief Report: A Brief Video Intervention for Increasing Autism Knowledge in a General Population Sample.

As many individuals in the general population will likely interact with autistic persons in various contexts, ensuring adequate autism knowledge and awareness is important. Increased knowledge of autism has been linked to positive outcomes such asa reduction in explicit bias against autism by non-autistic adults and an increase in service quality for autistic individuals provided by indirect professionals. For this study we developed an informational video about autism and employed a randomized control trial to evaluate its effectiveness at increasing autism awareness in a general population sample. Participants were randomly assigned to the intervention (n = 80) or active control group (n = 72). Results from a repeated measures analysis of variance indicated that the video intervention was effective at increasing knowledge about autism. Results from this study can be applied to future educational efforts aimed at increasing awareness about autism among the general population.

Brief Report: Training New Zealand Well Child/Tamariki Ora Nurses on Early Autism Signs Using the Social Attention and Communication Surveillance-Revised.

Universal developmental surveillance is considered best practice for early identification of autism. We analysed data from 175 New Zealand Well-Child/Tamariki Ora nurses who attended a 1-day training in developmental surveillance for autism using the social attention and communication surveillance-revised (SACS-R) tool. We used a survey to measure nurses’ knowledge of typical development, knowledge of early signs of autism, general autism knowledge, and confidence in identifying and discussing early signs, prior to the workshop, after the workshop, and at follow-up. We measured perceived acceptability of the SACS-R after the workshop and at follow-up. Nurses showed improvements on all measures from pre-workshop to post-workshop and pre-workshop to follow-up. Implementation of the SACS-R across different contexts appears feasible and acceptable.Supplementary InformationThe online version contains supplementary material available at 10.1007/s10803-021-05344-7.

How can psychiatrists make mental health services more accessible for people with autism?

Unrecognised psychiatric and medical conditions can lead poorer health outcomes, lower health-related quality of life and increased mortality in people with autism, compared with the general population. A reasonable adjustment required in mainstream services is patient prioritisation by clinicians with knowledge and understanding of autism. Developed as part of the revised autism strategy, the recently developed autism competency framework lists the range of capabilities that psychiatrists who treat people with autism should have. Psychiatrists could lead the workforce transformation required to make the reasonable adjustments to mainstream mental health services needed to improve outcomes for people with autism.

Autism in Higher Education: dissonance between educators’ perceived knowledge and reported teaching behaviour

ABSTRACT This study explores the autism knowledge and awareness of educators in Higher Education (HE) as well as their attitudes towards accommodating autistic students within their teaching. Semi-structured interviews were used to allow for in-depth investigation of this topic. Thematic analysis uncovered a striking dissonance between educators’ positive attitudes towards accommodating autistic students and their actions in the classroom. A range of additional themes and subthemes interacted with the concept of dissonance. Even though participants self-described as having expert knowledge of autism, an attitude-behaviour gap was evident. Impact on inclusivity for autistic students is discussed, alongside recommended directions for future study and practice.

Academic, Activist, or Advocate? Angry, Entangled, and Emerging: A Critical Reflection on Autism Knowledge Production.

There has been a focus on autistic-led and participatory research in autism research, but minimal discussion about whether the field is hospitable to autistic involvement. While the focus on participatory and/or autistic-led research is abundantly welcome, a wider conversation should also happen about how autistic people are treated in the process of knowledge creation. As such, I present a critical reflection on my experiences of academia as an autistic autism researcher. I open by questioning whether I am an academic, an activist, or an advocate before discussing my journey through academia, and my exposure to dehumanizing, objectifying, and violent accounts of autism. I highlight how the construction of objectivity has resulted in a failure to question the validity of these dehumanizing accounts of autism, which are regarded as “scientifically-sound” by virtue of their perceived “objectivity.” Furthermore, I discuss how the idea of objectivity is used to side-line autistic expertise in disingenuous ways, especially when this knowledge challenges the status-quo. Despite claiming to be value-free, these dehumanizing accounts of autism embody social and cultural values, with a complete lack of transparency or acknowledgment. I then discuss how these dehumanizing accounts and theories—entangled in values—reverberate into autistic people's lives and come to be ways of constituting us. Following this, I discuss the rationality of the anger autistic people feel when encountering these accounts, and instead of urging people to distance themselves from these emotions, I discuss the value of “leaning-in” as a radical act of dissent in the face of research-based violence. I then make a call to action urging all those who write or speak about autism to engage reflexively with how their values shape their understanding and construction of autistic people. Lastly, I conclude by answering my opening question: I have emerged as an advocate, activist, and academic. For me, belonging to the autistic community, acknowledging our marginalization, and recognizing our suffering within society means that hope for a better and just future has always, and will always underpin my work.

A qualitative exploration of autistic mothers' experiences II: Childbirth and postnatal experiences.

Navigating childbirth and the postnatal period may pose additional challenges for autistic people, who can face communication and sensory barriers to accessing healthcare. However, research exploring autistic experiences of parenthood is scarce. Semi-structured interviews were conducted with 21 autistic and 25 non-autistic women 2–3 months after giving birth. Interviews concerned experiences of childbirth, postnatal healthcare and parenting. Thematic analysis revealed that sensory aspects of childbirth could be challenging for autistic participants; participants highlighted the need for sensory adjustments. Autistic participants stressed the importance of clear, direct communication from professionals during the birth. During childbirth and the postnatal period, autistic participants sometimes felt that professionals lacked knowledge of autism and this could hinder receiving appropriate adjustments. Both groups reported several parenting strengths and challenges. The findings indicate ways in which childbirth and postnatal healthcare can be improved for autistic people, including sensory and communication adjustments. They also indicate a need for greater autism-related training for professionals involved in childbirth and postnatal care.Lay abstractVery little research has looked at how autistic people experience childbirth and the first few months of parenthood. We interviewed 21 autistic and 25 non-autistic women 2–3 months after their baby was born, to find out how they experienced giving birth and being a parent. Some autistic participants found sensory aspects of giving birth difficult, such as noise and being touched. They also wanted healthcare professionals to give them clear information while giving birth. Participants sometimes thought that healthcare professionals did not know enough about autism. Autistic and non-autistic participants both found parenthood difficult at times and autistic parents sometimes had extra difficulties, such as with planning and organising. Autistic participants also felt good at understanding their baby’s needs. This research suggests that autistic people would benefit from changes to childbirth and postnatal healthcare such as being communicated with more clearly. It also indicates that healthcare professionals should receive more training about autism.

Job Seeking and Daily Workforce Experiences of Autistic Librarians

Anecdotal accounts suggest that librarianship is a rewarding career for some autistic adults, though no empirical evidence exists to support such claims. Additionally, barriers may exist for autistic librarians, both in job seeking and in on-the-job experiences. As autistic adults are un- and underemployed more than their neurotypical peers, it is important to understand the role that libraries can play in supporting their employment. In this qualitative study, ten librarians with graduate degrees, who self-identify as autistic, describe their experiences in job seeking and daily working experiences in the library field through interviews in multiple formats. Results indicate issues around disclosure and accessibility, and that librarians thrive when their skills are prioritized and when they feel like they are helping or doing meaningful work. Additionally, these librarians find their way into the profession through exposure to libraries and take comfort in working with like-minded people. Finally, autistic librarians in this study describe the hope that hiring managers and library supervisors have at least some knowledge and understanding of autism, along with the willingness to learn more.

If you want to develop an effective autism training, ask autistic students to help you.

Autistic university students are often left out because people do not understand autism. We wanted to help people understand autism. Most autism trainings are not made by autistic people. Autistic people know what it is like to be autistic. So autistic people may be the best teachers when it comes to teaching about autism. Autistic students and non-autistic professors made an autism training. The students made videos for the training. They also helped make questions to see what people learned from the trainings. Professors who are not autistic made a training on their own. Students in New York City tried out the trainings. After they answered questions, they did either the training the autistic students helped make or the training made by only professors. Then, they answered questions again. We learned from the students how to make our trainings better. Then, students from two universities in the United States and one university in Lebanon did our trainings and questions. Both trainings made hidden feelings about autism better. The training autistic students helped make taught students more than the training professors made on their own. The autistic-led training also helped students accept autism more. These studies show that autistic students can make autism research and trainings better. At the end of this article, autistic students share their ideas for how to make autism trainings even better in the future.

It’s who you know: Caregiver social networks predict service use among under-resourced children with autism

BackgroundNumerous studies have shown that racial/ethnic minority and under-resourced families face barriers that delay timely access to autism services. These barriers include lack of resources and information about autism, financial hardship, mistrust in the service system, cultural and language mismatch, and other factors that have yet to be identified. MethodThe current study aimed to examine additional caregiver and system-level factors that could be associated with early service access using a diverse sample from four study sites (Los Angeles, CA; Philadelphia, PA; Sacramento, CA; and Rochester, NY). Partnering with community agencies that serve traditionally underrepresented groups, the research team recruited 118 caregivers of young children with autism who were low-income, English, Spanish or Korean speaking and had not accessed autism-specific services. ResultsRegression analyses revealed that the total number of services accessed were associated with caregiver social network size (p = 0.011) but not by race, autism knowledge and caregiver agency. Among families receiving at least one non-autism specific service, a marginally significant interaction effect of site and primary language on total services received was observed (p = 0.06). ConclusionFindings suggest that caregivers’ social network connections are crucial in early service access, and future interventions could target increasing social networks to improve families’ service engagement. More attention for non-English speaking families, especially those living in areas with few supports in their native languages, is needed.

Is autism stigma higher in South Korea than the United States? Examining cultural tightness, intergroup bias, and concerns about heredity as contributors to heightened autism stigma.

Misunderstandings about autism may be more common in South Korea than the United States. Koreans often have clear ideas about how people should act. Another way of saying this is that Korea has a tight culture. Americans are looser, meaning people are freer to act as they like. Autistic people often do not act as people expect them to. This makes autistic people stand out. Autistic people may stand out more in tight cultures like South Korea. We studied how people in South Korea and the United States feel about autism. We wanted to see why Korean people might reject autistic people more than people in the United States do. American and Korean people did online surveys. Koreans said they did not want to get close to autistic people more than Americans did. People who understood autism and had met and liked autistic people wanted to get closer to autistic people. We were surprised to learn that Americans said having an autistic brother or sister makes it harder to find a romantic partner more than Korean people did. People who believed that autism makes it harder for family members to find love did not want to get very close to autistic people. Koreans said people should act as expected more than Americans did. People who believed that acting as expected was important did not want to get very close to autistic people. Teaching people that there are many ways of being a good person may help them understand and appreciate autistic people.

Mental health Project ECHO Autism: Increasing access to community mental health services for autistic individuals.

Despite the high prevalence of co-occurring autism spectrum disorders and mental health condition(s), there exist substantial barriers to mental health treatment for autistic individuals. These barriers are exacerbated by a lack of mental health provider training and self-efficacy in providing adapted services to autistic individuals. One method which has been effective in mitigating similar service gaps is the Extension for Community Healthcare Outcomes (Project ECHO) Autism model, a tele-mentoring platform that connects primary care physicians to autism spectrum disorder experts to improve physicians’ knowledge, self-efficacy, and practice. This study developed and implemented a pilot mental health version of Project ECHO Autism designed to increase mental health provider knowledge, self-efficacy, and problem-solving. Community mental health providers (N = 51) participated in the 6-month Project ECHO Autism including mental health–focused didactics and provider case presentations. Analysis of pre- and post-measures revealed improvements in all domains, including significant increases in provider knowledge of autism spectrum disorders, self-efficacy, and problem-solving. Participants additionally reported high satisfaction with their experience. Taken together, preliminary results indicate that Project ECHO Autism may be a feasible, accessible, and effective method for increasing mental health provider competence and ultimately increasing access to services for autistic individuals who have co-occurring mental health diagnoses.Lay abstractAlthough many autistic individuals have additional mental health conditions, most have a hard time getting services from mental health providers. One reason why these services can be hard to access is that many mental health providers do not feel confident in their ability to provide services to autistic individuals. To share autism expertise with local community providers and boost their confidence in working with autistic individuals, we created a mental health version of the Extension for Community Healthcare Outcomes (Project ECHO) Autism virtual teleconsultation program. In this pilot study, we recruited 51 community mental health providers to participate in Project ECHO Autism. During each biweekly session, providers received information from autism experts about how to tailor mental health interventions (e.g. attention-deficit hyperactivity disorder or anxiety interventions) for use with autistic individuals. They also had the opportunity to ask questions and get advice on their current cases. At the end of the 6-month study, mental health providers showed improvements in their confidence, in their knowledge of autism, and in their problem-solving skills. Nearly half (45%) of these providers participated from rural counties, suggesting that the Project ECHO Autism teleconsultation model was able to reach mental health providers who might not have been able to get training otherwise. This study supports the feasibility of using Project ECHO Autism to share autism knowledge with mental health providers, consequently expanding mental health service options for autistic individuals with co-occurring mental health conditions.

‘I'm Not Even Bothered if they Think, is that Autism?’: An Exploratory Study Assessing Autism Training Needs for Prison Officers in the Scottish Prison Service

AbstractPrevious studies indicate that autistic individuals can experience increased distress in prison, leading to significant disruption in the prison regime and difficulties in rehabilitation (Allely 2015; Allen et al. 2008). This exploratory study investigates autism knowledge and training needs among prison officers. Current understanding, possible training content and a strategy for implementation of autism training for officers are all explored. Methods utilised include a survey and interviews/focus group. Themes identified include specific vulnerabilities, staff skill, training needs and implementation barriers. Participants showed some awareness, but lacked understanding of autism in a prison setting. This article explores whether focused training on one condition is problematic, due to limited resources within the prison system. A wider focus on practical skills to supporting people with neurodiverse conditions and links with non‐prison‐based local health services is seen as more effective than focusing on individual diagnosis within a prison setting.

A Model of Practice for Improving Autism Knowledge in Teachers of Mainstream Students on the Autism Spectrum in Australia

AbstractAustralian mainstream school teachers report a severe shortage of accessible autism-focused resources, strategies, and professional development (PD). This 2-part mixed methods study investigated the effect of using a web-based model of practice (MoP) for PD. The MoP contains evidence-based, autism-specific educational practices and resources designed for mainstream teachers of students on the autism spectrum. The aim was to examine teacher responses to using the MoP and the impact of the mode of delivery. In Part 1, 3 PD delivery conditions for using the MoP were trialled (8 weeks): face-to-face support, online support, or web-based access to detailed resources only. Support was provided by expert autism educators. Teachers (N = 15) reported that the MoP was an accessible, comprehensive, and practical support for educational decision-making, and that support encouraged implementation of the MoP practices. Part 2 trialled a hybrid PD model in 6 regional schools. Limited face-to-face and online support plus access to the MoP was trialled. Interview data indicated that a hybrid model can be an effective method of providing immediate support for teachers.

AUTISM AWARENESS IN PARENTS IN THE AGE OF DIGITAL MEDIA (A CRITICAL STUDY)

Autism is a developmental condition marked by difficulties with social contact and speech, as well as confined, repetitive behavior. This disease manifests itself at birth or the first two and a half years of existence. While the afflicted children look entirely average, they indulge in puzzling and troubling activities that are noticeably different than those of regular children. Autism is becoming more prevalent globally. Due to the fact that parents are typically the main providers, their willingness to understand the signs and effects of autism and react accordingly is critical if we are to offer the best treatment possible to autistic persons. The aim of this research was to assess parents' knowledge and understanding of autism with the help of social media.