"There is nothing"-Exploring diagnostic and service access for autistic individuals in Uruguay: A qualitative study.

Awareness and risk factors of autism spectrum disorder in an Egyptian population

Background:Awareness of autism spectrum disorder (ASD) may impact early diagnosis, intervention, and developmental outcomes the disease.Objective(s):To assess the awareness and knowledge regarding ASD among mothers of children with ASD in the State of Qatar.Methods:We conducted a cross-sectional study on 600 mothers of eligible children at 10 main primary health care centers (PHCCs) in Qatar. A qualitative approach through a pretested questionnaire was used to collect data.Results:Around 91.2% of the mothers were aware of ASD, of which 32.7% had good knowledge of the common disease features. Mothers’ satisfaction with the delivered healthcare was variable with regard to health education, support and interventions.Conclusions:Although mothers’ awareness of ASD was high, their actual knowledge about the disease features was poor. Mothers’ experience with ASD is vivid expressing emotional and social aspects, together with satisfaction about relevant services.

Pharmacists can play a role in enhancing treatment outcomes of autistic people, but they must possess sufficient knowledge and awareness of autism spectrum disorders (ASD). Current evidence is scant among Nigerian pharmacists. The objectives of this study were to: (1) Describe and compare Nigerian hospital and community pharmacists' ASD knowledge, awareness, and perceptions; (2) Determine if there is a significant correlation between ASD knowledge, awareness, and perceptions; (3) Determine if demographic and practice-related factors are significantly related to pharmacists' ASD awareness. Hospital and community pharmacists were administered a self-report survey to assess ASD knowledge and awareness, as well as confidence in caring for autistic people, and perceived benefits of ASD training and care. Data were collected from August to December 2021 and analyzed using inferential and descriptive statistics. Cronbach's alphas were used to assess reliability. Of respondents, (Total N = 383; N = 201 hospital pharmacists from various states) and N = 182 community pharmacists in Lagos state) community pharmacists had significantly higher mean knowledge than hospital pharmacists (58.10% ± 19.00% vs 53.20% ± 20.10%; P = .016). Overall mean awareness score was 2.90 ± 0.80, with no significant difference between community and hospital pharmacists (P = .096). Perception regarding ASD continuing education (CE) was strongly correlated with the perceived benefits of pharmacy services to autistic people in Nigeria (r = .69; P < .0001). Additionally, awareness was positively correlated with knowledge (r = .47, P < .0001) and perceived confidence in ASD medication counseling (r = .54, P < .0001). Multivariate analysis revealed that being a hospital pharmacist, having courses on ASD during pharmacy degree programs, undergoing ASD CE, and having <5 years of practice experience were significantly (P < 0.05) associated with higher ASD awareness. Respondents had suboptimal knowledge and awareness of ASD. Including ASD in the pharmacy curriculum and providing CE programs may help improve pharmacists' ability to provide more optimal patient care services for autistic people.

Objective:Examine the awareness of autism spectrum disorders (ASD) in our community which would help in early recognition and improved support of affected families.Methods:A focused 20-item questionnaire was designed to survey the public awareness and knowledge of ASD. Personal interviews were conducted during an ASD awareness day, which was organized in a major shopping mall on February 20, 2015 in Jeddah, Kingdom of Saudi Arabia.Results:A total of 259 individuals participated in the study with 47% being <30 years of age and 57% being females. Most participants (60%) were married, educated (68% university level), and employed (54%). When asked if they knew what autism is, 88% responded positively. However, when asked to rate their degree of knowledge, 41% felt that it is weak. Females and those older than 30 years of age were more likely to feel knowledgeable (p=0.04 for females and p=0.013 for those >30 years of age). Females were more likely to think that autistic children can be employed in the future (p=0.008), whereas males were more likely to think that autism is similar to mental retardation (p=0.005).Conclusions:The public awareness of ASD needs improvement. Areas for targeted education were identified to help improve the quality of life of autistic children and their families.

Morality is important for how humans treat each other and non-human animals. Differences in moral thinking have been found between autistic and neurotypical individuals. This research has relied on ways of thinking about moral psychology that suggest that mature morals develop as individuals learn to take the perspectives of others. Yet, even autistic individuals, who sometimes differ in their ability to take others' perspectives, make moral judgements that are similar to neurotypical individuals. Moral foundations theory suggests that moral psychology is not hierarchical but differs depending on culture. This theory could therefore help make sense of similarities and differences in autistic and neurotypical moral thinking. Moral foundations theory has not yet been investigated among autistic individuals. In this study, we interviewed autistic adults as a first attempt at understanding how moral foundations theory fits with autistic moral thinking. We found that all five moral foundations of moral foundations theory were represented in the interviews, yet certain foundations appeared more prominent than others. The autistic adults interviewed in our study discussed issues of care and fairness more than of loyalty, authority or purity when prompted to discuss moral transgressions. Future research should use quantitative methods to compare groups of autistic and neurotypical individuals to clarify similarities and differences in moral thinking between the groups.

The study aimed at identifying Autism Spectrum Disorder (ASD) awareness level among Saudi society members. ASD awareness scale applied to (888) individuals. Results showed that most participants have no information about ASD, derived from their work in Special Education. There are no statistically significant differences in ASD awareness level among participants from different districts. There are statistically significant differences in the level of ASD awareness between male and female participants, favoring females, and between young and old participants, favoring young. The highest ASD awareness level was among PhD holders, and the lowest was among holders of moderate and lower qualifications. In profession terms, the highest ASD awareness level was among participants practicing Special Education and the lowest was among unemployed.

This dissertation study focuses on the underexplored area of autism spectrum disorder (ASD) and aging, recognizing the increasing number of individuals on the spectrum reaching older adulthood. Despite the lifelong nature of ASD, most of the research has been centered on children, leaving a significant gap in knowledge regarding the experiences and needs of aging individuals with ASD. Furthermore, the impact of the COVID-19 pandemic on this population adds an additional layer of complexity and importance. To address this gap, a concurrent nested mixed methods design was employed, utilizing both qualitative and quantitative data collection methods. Semi-structured interviews were conducted with aging autistic adults and their family members, while quantitative data from the 2018 Pennsylvania Autism Needs Assessment (PANA) provided additional context. This approach allows for a comprehensive understanding of the experiences and perspectives of this population, incorporating both subjective narratives and statistical data. The qualitative interviews were guided by an interview guide and focused on various aspects such as the challenges faced by aging autistic adults and their supporters, service access experiences, community participation, and the impact of the COVID-19 pandemic. The results of this study contribute to the limited literature on ASD and aging, shedding light on the unique needs and experiences of aging autistic individuals and their families. The findings provide valuable insights into topics such as stress, trauma, service access, community participation, and the impact of the COVID-19 pandemic. By integrating qualitative and quantitative data, this study offers a comprehensive understanding of the multifaceted issues surrounding ASD and aging. The insights gained from this study can inform the development of interventions, services, and policies tailored to meet the specific needs of this population. Additionally, it underscores the need for increased awareness and understanding of ASD beyond childhood, challenging prevailing myths and stereotypes and recognizing the valuable contributions that autistic individuals can make to society.

An earlier diagnosis of autism spectrum disorder might lead to earlier intervention. However, people living in Latin American and Caribbean countries do not have much knowledge about autism spectrum disorder symptoms. It has been suggested that the older a child is when diagnosed, the fewer opportunities he or she will have to receive services. We asked 2520 caregivers of autistic children in six different Latin America and Caribbean Countries, the child's age when they noticed some developmental delays and their child's age when they received their first autism spectrum disorder diagnosis. Results indicate that, on average, caregivers were concerned about their child's development by 22 months of age; however, the diagnosis was received when the child was 46 months of age. In addition, older children with better language abilities and public health coverage (opposed to private health coverage) were diagnosed later. On the contrary, children with other medical problems and more severe behaviors received an earlier diagnosis. In our study, children were diagnosed around the time they entered formal schooling, delaying the access to early intervention programs. In summary, the characteristics of the autistic person and the type of health coverage influence the age of diagnosis in children living in Latin America and Caribbean Countries.

As an information-bearing auditory attribute of sound, pitch plays a crucial role in the perception of speech and music. Studies examining pitch processing in autism spectrum disorder have produced equivocal results. To understand this discrepancy from a mechanistic perspective, we used a novel data-driven method, the reverse-correlation paradigm, to explore whether the equivocal findings in autism spectrum disorder have high-level origins in top–down comparisons of internal mental representations of pitch contours. Thirty-two Mandarin-speaking autistic individuals and 32 non-autistic individuals undertook three subtasks testing mental representations of pitch contours in speech, complex tone and melody, respectively. The results indicate that while the two groups exhibited similar representations of pitch contours across the three conditions, the autistic group showed a significantly higher intra-group variability than the non-autistic group. In addition, the two groups did not differ significantly in internal noise, a measure of the robustness of participant responses to external variability, suggesting that the present findings translate genuinely qualitative differences and similarities between groups in pitch processing. These findings uncover for the first time that pitch patterns in speech and music are mentally represented in a similar manner in autistic and non-autistic individuals, through domain-general top–down mechanisms.Lay abstractAs a key auditory attribute of sounds, pitch is ubiquitous in our everyday listening experience involving language, music and environmental sounds. Given its critical role in auditory processing related to communication, numerous studies have investigated pitch processing in autism spectrum disorder. However, the findings have been mixed, reporting either enhanced, typical or impaired performance among autistic individuals. By investigating top–down comparisons of internal mental representations of pitch contours in speech and music, this study shows for the first time that, while autistic individuals exhibit diverse profiles of pitch processing compared to non-autistic individuals, their mental representations of pitch contours are typical across domains. These findings suggest that pitch-processing mechanisms are shared across domains in autism spectrum disorder and provide theoretical implications for using music to improve speech for those autistic individuals who have language problems.

Purpose Autism spectrum disorder (ASD) is characterized by deficits in social communication and interaction, restricted interests and repetitive behavior. Humor appreciation in autistic individuals has been examined from the perspective of incongruity-resolution theory but not fully examined in terms of benign violations. Therefore, this study aims to examine the benign violation theory of humor appreciation among autistic individuals. Design/methodology/approach In total, 38 and 462 autistic and non-autistic participants rated the degree of humor appreciation, violation appraisal and benign appraisal of 12 humorous stimuli. Furthermore, participants completed the Social Responsiveness Scale 2 Adult-Self Edition. Findings Restricted interests and repetitive behavior had significant positive effects on humor appreciation, violation appraisal and benign appraisal. Focusing on autistic traits, especially restricted interests and repetitive behavior, is important when considering humor appreciation in autistic individuals because differences in the degree of restricted interests and repetitive behavior are considered a gap in sharing humor. Originality/value This study focused on autistic traits such as deficits in social communication, restricted interests and repetitive behavior and examined their relationships with humor appreciation from the perspective of benign violation theory. The findings suggest that these three autistic traits are involved in the gap in sharing humor between autistic and non-autistic individuals. Therefore, identifying the association between autistic traits and humor appreciation offers a new perspective to support the formation of humorous relationships between autistic and non-autistic individuals.

The Editor, Autism Spectrum Disorder (ASD) is an umbrella, constructed to describe difficulties in social communication, with a very confined range of interests and fixed patterns along with atypical sensory-motor behaviors beginning in early childhood. It is estimated that over 350,000 children are on the spectrum in Pakistan, and the prevalence continues to rise(1). Research and studies have shown that early intervention has a positive effect on the later development of children on the spectrum (2). In a child’s life, a sensitive stage of development called the critical period is the time when new connections (synapses) are made that are influenced by environmental stimuli and personal experiences of the child (3). Established diagnosis and intervention in this period influences the brain’s neural plasticity. Hence filling the gap between the child’s growth margin and typically developing peers and supporting their way into adulthood with the competencies necessary to live an independent and carefree life. In underdeveloped nations like Pakistan, there is inadequate knowledge and awareness of ASD. Children are misdiagnosed and caregivers are deluded into the thought of a cure of autism due to the existence of various superstitions and necromantic beliefs(4). Different oil mixtures, herbal medicines, and several other home remedies are practiced: some to elude over-sensitivity or under-sensitivity, some to magically make the child speak etc. However, these practices have no effect, other than losing precious years of the child’s life (5). Parents and caregivers of autistic children should be counseled that ASD is not a disease to cure but a way to adapt. They should be convinced that being autistic is not because some pathogen invaded the brain; rather it is because the brain is wired differently and functions at its own pace. Seminars and webinars should be held for caregivers to help them deal with the psychosocial issues and the social stigma surrounding ASD. There is also a need to create awareness at the government level to better equip people, professionals, and healthcare systems to better cater for the needs of children with ASD. Moreover, efforts should be made to make ASD screening a part of universal pediatric screening so that intervention is provided as early as possible. There is a growing need to understand that ASD is not a curse manifested but an individuality to celebrate.

Training programs for the awareness of autism for professions are supported under the leadership of the United Nations. Misinformation can cause socially destructive results as that which is incorrect is assumed to be known correctly. This study included a total of 308 participants comprising 226 (73.4%) preschool teachers and 82 (26.6%) school counselors. The basic questions related to the awareness and knowledge of autism spectrum disorder (ASD) were selected based on the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) and the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2). It was attempted to categorize the questions into four fields: (1) social interaction, (2) social communication and speech, (3) limited interest pattern with stereotypical and ritualistic behaviors, and (4) comorbidities, etiological characteristics, and the relationship between vaccinations and autism. The results of the study indicate that the awareness of ASD, including core symptoms, was extremely lacking in preschool teachers and school counselors. Moreover, they had extreme prejudice to information known to be incorrect.

AIM:Autism spectrum disorder (ASD) is a common neurodevelopmental disorder in children. Family physicians with the first medical contact of children are among the most frequent physicians with ASD. We aimed to investigate family physicians’ awareness of ASD.METHODS:This study was carried out family physicians in between September 25-October 15, 2018. The questionnaire form on autism awareness prepared by the researcher was delivered to family physicians electronically and in printed form, and it was filled out by volunteers.RESULTS:Forty-eight family physicians with an average professional experience of 16.9 ± 8.8 years participated in the study. A group of 66.7% of the participants had not previously received education on ASD, and 70.8% of them did not refer any child to child psychiatry with suspected ASD in the last 6 months. The participants stated that the most common clinical features in children with ASD were the inability to make eye contact (72.9%) and repetitive movements (47.9%), and 56.3% of them stated one or more features that are not observed in ASD. The compliance of the participants’ answers about the clinical features observed in children with ASD with the DSM-5 criteria was determined to be 54.6 ± 18.4%. Significantly higher compliance rates were observed in the participants with education on autism and those working as a physician below 15 years.CONCLUSION:In our study, family physicians’ awareness of ASD was not found to be adequate. Education programs on autism awareness should be applied to family physicians who are probably the most frequently encountered physicians by children with ASD.

This study aimed to examine the attitudes of sports science students towards Autism Spectrum Disorder (ASD) in the context of various variables. The research was conducted in a survey model. To determine the participants' attitudes towards Autism Spectrum Disorder, the "Autism Spectrum Disorder Attitudes Scale (ASDAS)" developed by Flood et al. (2013) and adapted to Turkish by Batum (2019) was employed as the data collection tool. Additionally, a 9-item personal information form was included in the data collection tool, addressing participants' gender, academic class, major, the presence of individuals with autism in their immediate surroundings, willingness to work with individuals with autism, participation in programs, seminars, or courses related to autism, knowledge about the educational settings and processes for individuals with autism, awareness of Autism Spectrum Disorder in society, and preferred educational environment for individuals with autism. The data collected from the participants were analyzed using SPSS-25 software. A total of 239 students, consisting of 89 females and 150 males, participated in the study. The results indicated significant differences in the attitudes of students towards Autism Spectrum Disorder concerning the gender variable and the knowledge sub-dimension of ASDAS, the desire to work with individuals with autism and the social attitude and personal distance sub-dimensions of ASDAS, knowledge about the educational settings and processes for individuals with autism and the personal distance sub-dimension of ASDAS, awareness of Autism Spectrum Disorder in society and the total score and knowledge sub-dimension of ASDAS, the major variable and the personal distance sub-dimension of ASDAS, and the preferred educational environment for individuals with autism and the social attitude and knowledge sub-dimensions of ASDAS. In conclusion, it was observed that attitudes towards Autism Spectrum Disorder are not solely determined by individuals' educational level or knowledge but are also influenced by social, cultural, and individual factors.

Photo ID 117847165© Mohamad Faizal Ramli|Dreamstime.com INTRODUCTION In our cosmic narrative, for centuries we believed the Earth held the universe's center, a belief that shifted with evidence and transformed our understanding of our cosmic place. Correspondingly, paradigms surrounding autism have been shaped by medical assumptions that label it a condition, a disorder, or even a tragedy. Just as our understanding of celestial perceptions evolved, that Earth was not at the center of the universe, it is time for a seismic shift in how we perceive and address autism. ANALYSIS Venturing into autism research, we see the prevailing medical paradigm that defines Autism Spectrum Disorder (ASD) as a developmental disability caused by neurological differences.[1] Social communication, repetitive behaviors, language, movement skills, cognitive abilities, and emotional reactions—all cast as deficits.1 This narrative, embraced by researchers, medical professionals, and society, serves as the foundation of our current understanding. Yet, delving deeper unveils a counter-narrative—one not etched by researchers but articulated by those living with autism. This narrative introduces us to the neurodiversity paradigm, a revolutionary lens that sees autism as a part of the rich tapestry of human neurological development, fostering a stable cognitive landscape.[2] It posits that there is no singular "healthy" brain; and no definitive way of neurocognitive functioning.2 Shockingly, although this perspective is more inclusive, portraying autistic people as crucial contributors to humanity, it remains the more controversial model in society. Contrasting with the classical medical view that treats autism as a disease to be eradicated, the neurodiversity paradigm challenges the notion of normalizing society and underscores the importance of recognizing autism as an advancement. Without it, we would lose invaluable perspectives, strengths in attention to detail, visual perception, creative and artistic talents, mathematical and technical abilities, and expertise in ‘niche’ areas.[3] Asserting that every form of neurological development holds equal validity, deserving of respect and human rights, the neurodiversity paradigm counters the deficit mindset perpetuated by the traditional medical view. The repercussions of our medical-centric assumptions extend beyond perception; they infiltrate the very fabric of societal structures. Autism is labeled a disability. But is it autism that disables individuals, or is it the societal environment that excludes and alienates cognitive diversity? The traditional medical model points fingers at individuals, placing the onus on the differently abled person, not the disabling environments. For example, our societal perspective on disability is largely framed by the medical model, which views disability as an individual problem. According to this model, the disability is located within the person experiencing it—within individuals like me.[4] For instance, I often find myself becoming excessively overstimulated in places like department stores. The bustling environment—loud, brightly lit, unpredictable, and crowded—is a sensory challenge. Following the medical model attributes my struggle in department stores to a perceived problem with the way my brain processes sensory inputs, attributing it to my autism. The consequences of the medical model are far-reaching and profound, particularly in shaping our understanding of autism. This perspective places undue blame on those with autism and directs the focus of research toward "curing" autism rather than addressing societal structures that contribute to exclusion and alienation. One glaring example of this misguided approach is the predominant focus of autism research on finding a cure, as seen in 2020 with a major research theme centered around gene therapies aimed at altering the genetic factors associated with autism-related conditions.[5] Even influential organizations like Autism Speaks, until 2016, subscribed to the notion of seeking a cure.[6] Their evolution, acknowledging the need to listen to the lived experiences of autistic individuals, led to a shift in their mission—from searching for a cure to promoting advocacy, support, understanding, and acceptance.6 This shift highlights the importance of moving away from the medical model. Instead, we should adopt more inclusive models like the neurodiversity or social model of disability, which are rooted in the idea that neurological differences, including autism, are natural variations of the human brain. Listening to the voices of those with autism and embracing the social model of disability allows us to recognize that disabling factors often reside in societal structures, not within the individuals themselves. This paradigm shift is crucial for fostering an inclusive society that values and accommodates cognitive diversity. For instance, when we enter the social model of disability—an alternative lens that shifts the blame from the individual to the environment, it views disability not as a characteristic but as an action done to individuals by society4. In this model, going to a department store is not a struggle for me because there is something inherently wrong with me, but it is a struggle because the environment around me does not cater to my diverse needs. Imagine if our world, including department stores, were designed with neurodiversity in mind—quiet, dimly lit, predictable, and spacious. Neurodivergent individuals would still be cognitively different, but their surroundings would not disable them. Adopting the social model of disability would catalyze shifts in research and attitudes toward autism, reflecting the transformative changes observed in the department store examples. Rather than focusing on changing autistic individuals to fit societal norms, the emphasis would shift to enhancing the lives of neurodivergent people by advocating for structural changes in society. This shift aims to foster inclusivity while preserving individuals' authenticity and embracing their unique differences. Autistic individuals are not seeking a cure for autism because our neurodivergent way of thinking is integral to our identity. Yet, the considerable funding directed toward researching autism's causes for prevention or a "cure" underscores a lack of consideration for our voices in deciding how research funds are utilized. The emphasis on normalization, a cornerstone of the medical model's view of autism, prioritizes societal desires over the well-being of autistic individuals already part of our society. It is imperative to recognize this flaw in research that aims to cure autism, as it risks genetic research for eugenic purposes, necessitating regulation by the autistic community.[7] Redirecting resources from the pursuit of an unwanted cure to research supporting and empowering autistic people to lead fulfilling lives is essential. This redirection involves investing in communication research, offering tools such as communication boards, picture exchange communication systems, speech-generating devices, or sign language for nonverbal or speech-challenged autistic individuals, giving them a voice in our society.[8] Community living research, centered on community inclusion programs, not only provides services but also educates and reinforces accommodations for daily activities such as in schools, workplaces, or even in department stores as stated in the example.[9] Attention to support services for autistic individuals and their families, including residential and day support programs, respite, recreation, and transportation, is crucial.[10] A commitment to promoting lifelong support for autistic individuals necessitates advocating for caregiver support, home and community-based services, financial planning resources, and more.10 Additionally, research aiming to identify qualitative results of adaptation and modification strategies to support inclusive education for autistic students is paramount at school and classroom levels.[11] Research to improve healthcare quality and the healthcare system for autistic individuals is also essential, as they face shorter lifespans and worse health than non-autistics.[12] All these research initiatives align with the principles of the social model of disability. However, as a society that does not follow the social model; the bulk of our understanding of autism is rooted in research driven by medical assumptions and paradigms. In 2022, the United States allocated $306 million to autism research[13]. However, a considerable portion of this research approaches autism as a problem to be solved. An examination of a comprehensive study focused on the allocation of NIH autism research funding from 2008 to 2018 reveals a striking trend. In this distribution, 49.7% of the total funds were allocated to treatment development and evaluation, which represented 53.6% of all projects.[14] This statistic underscores a predominant emphasis on genetic and biological research. However, the goal of such research is not only to understand the underlying reasons for autism so we can cure it. But this research also explores ways of prevention or management of autism through pharmacological treatment or behavioral therapies like intervention or Applied Behavioral Analysis, both of which are intervention models focused on changing the external behaviors of autistic individuals, with the goal of making an autistic person look and act non-autistic.14,[15] Contrastingly, only a minimal fraction of NIH funding—9.1%, approximately $225 million out of nearly $2.5 billion dedicated to ASD research—was channeled towards services-related research.14 This includes critical areas such as improving accessibility and quality of services in the community, characterizing understudied groups, policy development, dissemination, and implementation.14 This glaring discrepancy highlights a dimin