Open access article:  (https://journals.sagepub.com/doi/full/10.1177/13623613221077721 )

Abstract

In this systematic review, we examined quantitative, qualitative and mixed methods studies on loneliness in autistic adults. A total of 1460 articles were identified, and 34 of these met inclusion criteria. Results demonstrated that (1) there is a paucity of qualitative data providing first-hand descriptions of loneliness from autistic adults; (2) few empirical studies have used reliable/valid measures of loneliness developed specifically for autistic adults, and in just one study was a measure of loneliness developed for, and validated in, autistic adults; (3) the collective dimension of loneliness (i.e. belonging in society) has been described by autistic adults, yet has not been investigated as frequently as the intimate (i.e. romantic relationships) or relational (i.e. friend/family relationships) dimensions of loneliness; (4) the factors associated with increased loneliness in autistic adults include autistic characteristics, anxiety, depression and suicidal ideation, negative experiences and learned helplessness, a lack of autism understanding and acceptance, sensory avoidance, camouflaging and unemployment; and (5) the factors associated with decreased loneliness in autistic adults include having relationships, participation in social skill interventions and/or experiencing fewer difficulties with social skills, positive views and acceptance of oneself, being female and time spent engaging in activities (e.g. online gaming). Directions for future research are considered.

Lay abstract

Recently, researchers have been interested in how autistic people experience loneliness. Yet, most of this research has focused on loneliness in autistic children and young people. We present the results of a systematic review on loneliness in autistic adults. A systematic review is a rigorous way of searching for all existing research on a topic and summarizing the findings about specific questions. We searched for all research published on this topic until 9 April 2021. We found 34 articles that investigated loneliness in autistic adults. This research showed that (1) there is fairly little research that has involved directly asking autistic adults about their first-hand experiences of loneliness (e.g. what loneliness feels like for them); (2) few research studies have used loneliness questionnaires specifically developed for autistic adults (this was attempted in just one research study); (3) collective loneliness (i.e. loneliness associated with how much an autistic person feels they ‘fit in’ to society) seems important to autistic adults but has not been investigated as commonly as other aspects of loneliness (e.g. loneliness associated with romantic relationships or friendships); (4) things that might increase loneliness in autistic adults include anxiety and depression, and a lack of autism understanding and acceptance, for example; and (5) things that might reduce loneliness in autistic adults include having relationships and self-acceptance, for example. In our article, we discuss the kinds of future research on loneliness in autistic adults that might be useful.

Citation: Umagami K, Remington A, Lloyd-Evans B, Davies J, Crane L. Loneliness in autistic adults: A systematic review. Autism. 2022 Nov;26(8):2117-2135. doi: 10.1177/13623613221077721. Epub 2022 Mar 8. PMID: 35257592; PMCID: PMC9597154.

Open access article: (https://acamh.onlinelibrary.wiley.com/doi/10.1111/jcpp.13534 )

Abstract

Since its initial description, the concept of autism has been firmly rooted within the conventional medical paradigm of child psychiatry. Increasingly, there have been calls from the autistic community and, more recently, nonautistic researchers, to rethink the way in which autism science is framed and conducted. Neurodiversity, where autism is seen as one form of variation within a diversity of minds, has been proposed as a potential alternative paradigm. In this review, we concentrate on three major challenges to the conventional medical paradigm – an overfocus on deficits, an emphasis on the individual as opposed to their broader context and a narrowness of perspective – each of which necessarily constrains what we can know about autism and how we are able to know it. We then outline the ways in which fundamental elements of the neurodiversity paradigm can potentially help researchers respond to the medical model’s limitations. We conclude by considering the implications of a shift towards the neurodiversity paradigm for autism science.

Citation: Pellicano E., den Houting J., (2021). Annual Research Review: Shifting from 'normal science' to neurodiversity in autism science. J Child Psychol Psychiatry, 63(4):381-396. doi: 10.1111/jcpp.13534.

Open access article: ( https://pubmed.ncbi.nlm.nih.gov/34514874/ )

Abstract

Diagnostic criteria for autism are relatively vague, and may lead to over and underdiagnosis when applied without clinical expertise. Indeed, autism is best reliably identified by experienced clinicians who take into account qualitative aspects of the condition. When assessing for autism in women, little guidance exists to support clinicians deciding whether to attribute adaptive difficulties to autism, a psychiatric condition, or both. The purpose of this study was therefore to propose guidelines for clinicians assessing for autism in women. To do this, we aimed to describe the clinical expertise involved in making positive and differential diagnoses of autism in adult women of typical intelligence. We interviewed 20 experienced clinicians from seven countries. We then elaborated Delphi statements summarizing participant views on the topic, which our participants rated. We obtained a final list of 37 suggested clinical guidelines to improve specificity and sensitivity of autism diagnosis in women. Participants had developed individual assessment strategies, although much overlap existed across participants. Participants provided insight to differentiate autism from post-traumatic stress disorder and Borderline Personality Disorder, and underlined the importance of being able to make differential diagnoses particularly in cases where non-autistic people had strongly self-identified with the spectrum.

Lay abstract

The diagnostic criteria for autism are relatively vague and can lead to both under- and over-diagnosis if applied as a checklist. The highest level of agreement that a person is autistic occurs when experienced clinicians are able to make use of their clinical judgment. However, it is not always clear what this judgment consists of. Given that particular issues exist when assessing for autism in adult women, we wanted to explore how expert clinicians address difficult diagnostic situations in this population. We interviewed 20 experienced psychologists and psychiatrists from seven countries and discussed how they conducted autism assessments in adult women. We then came up with a list of 35 statements that described participant views. Our participants completed an online survey where they rated their agreement with these statements and provided feedback on how the statements were worded and organized. We obtained a final list of 37 suggested clinical guidelines. Participants agreed that diagnostic tools and questionnaires had to be coupled with judgment and expertise. Participants felt that trauma and Borderline Personality Disorder could be difficult to differentiate from autism, and agreed on some ways to address this issue. Participants agreed that self-identification to the autism spectrum was frequent, and that it was important to provide alternative support when they did not ultimately diagnose autism.

Citation: Cumin J., Pelaez S., Mottron L., (2022). Positive and differential diagnosis of autism in verbal women of typical intelligence: A Delphi study. Autism, 26(5):1153-1164. doi: 10.1177/13623613211042719. 

Open access article:  ( https://pubmed.ncbi.nlm.nih.gov/33588579/ )

Abstract

This study explores autistic women’s experiences of eating disorder services. Estimates suggest that 20%–30% of women in treatment for anorexia nervosa display diagnostic features characteristic of autism. Research suggests that autistic individuals’ needs are not being met by standard anorexia nervosa treatments. In the current study, in-depth interviews were conducted with 15 autistic women with experience of anorexia nervosa, 12 parents of autistic women with anorexia nervosa, and 11 eating disorder healthcare professionals. Using thematic analysis, three overarching themes were identified: misunderstanding autism and autistic traits, one treatment does not fit all, and improving accessibility and engagement within services. We found that there were diverse barriers facing autistic women when in treatment for anorexia nervosa, and these were accentuated by a lack of autism understanding within eating disorder services. Future research should focus on developing interventions that are tailored to the specific needs of autistic individuals with anorexia nervosa.

Lay Abstract

This study explores autistic women’s experiences of eating disorder services. About 20%–30% of people with anorexia nervosa are also autistic, and current treatments seem not to work as well for them. We interviewed 15 autistic women with experience of anorexia nervosa, 12 parents of autistic women with anorexia nervosa, and 11 healthcare professionals working in eating disorder services. We asked autistic women and parents about their experiences of eating disorder services, and we asked healthcare professionals about their experiences treating autistic women with anorexia nervosa. Participants’ views were represented by three overall themes: misunderstanding autism and autistic traits, one treatment does not fit all, and improving accessibility and engagement within services. We found that autistic women face many barriers when in treatment for anorexia nervosa, often because of a lack of autism understanding within eating disorder services. Future research should look at developing anorexia nervosa treatments that can specifically help autistic individuals.

Citation: Babb C, Brede J, Jones CRG, Elliott M, Zanker C, Tchanturia K, Serpell L, Mandy W, Fox JRE. 'It's not that they don't want to access the support . . . it's the impact of the autism': The experience of eating disorder services from the perspective of autistic women, parents and healthcare professionals. Autism. 2021 Jul;25(5):1409-1421. doi: 10.1177/1362361321991257. Epub 2021 Feb 15. PMID: 33588579; PMCID: PMC8264634.

Open access article: (https://www.ej-med.org/index.php/ejmed/article/view/1156 )

Abstract

Introduction: Autism spectrum disorder (ASD) is a set of neurodevelopmental disorders characterized by a deficit in social behaviors and nonverbal interactions onset in the first 3 years of life. Therefore, the present study aimed to study the clinical features, nutritional status, risk factors, and behaviors of children with autism.

Methods: Across section study involved a total of 100 subjects 74 (76%) male and 26 (24%) female. The ages of the children were ranging from 3-17 years old. The self-administration questionnaire containing questions on behavior, health problems, nutritional status, and risk factors was also completed. Bodyweight and height were measured to calculate the BMI percentile. Laboratory tests such as blood glucose and HbA1C, vitamin D were included. Clinical and behavioral information is also involved. All samples were analyzed through either mean ±SEM or Chi-square to determine significant differences.

Results: The present study shows that the majority of the children have age 7 years old, and autism increased significantly at ages between 6-10 years (P<0.05). In comparison to females, a male has three times more affected by autism (P=0.000). There were many points identified in the study including autism onset started between 1-3 years, blood groups of parents O+ significant resultant in offspring with O+ blood groups, 20% of subjects have positive family history and consanguinity for each. The behavior of autistic children shows that children like playing with electronic IPAD, dislike hearing crying, and less sleeping hours than normal people but they have similar food attitudes and consumption compared to normal counterparts. Impairment in communication was the most common sign of autism and less like hours for play. Obesity was a common nutritional disorder and food behavior has been seen toward some foods. The common health problems reported were epilepsy, respiratory diseases, constipation, and UTIs.

Conclusion: The present study revealed that some behaviors, risk factors, health problems, and abnormal levels of calcium, hemoglobin, and vitamin D were determined. Furthermore, increase body weight some behaviors toward certain types of foods have been identified. This study suggested that routine monitoring of children with autism should include assessment of blood groups, dietary habits, as well as anthropometric measurements.

Citation: Childhood Autism: Clinical Characteristics, Nutritional Status, and Psychosocial Features, European Journal of Medical and health sciences, (2022), Sara Almsmary, Waala Alwarfaly et al.