1. Pukki H, Bettin J, Outlaw AG, Hennessy J, Brook K, Dekker M, Doherty M, Shaw SCK, Bervoets J, Rudolph S, Corneloup T, Derwent K, Lee O, Rojas YG, Lawson W, Gutierrez MV, Petek K, Tsiakkirou M, Suoninen A, Minchin J, Döhle R, Lipinski S, Natri H, Reardon E, Estrada GV, Platon O, Chown N, Satsuki A, Milton D, Walker N, Roldan O, Herrán B, Cañedo CL, McCowan S, Johnson M, Turner EJ, Lammers J, Yoon w-h. Autistic Perspectives on the Future of Clinical Autism Research. Autism in Adulthood;2022 (2022/06/01);4(2):93-101.

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2. Dunn D. Accepting the Monsters. Autism in Adulthood;2022 (2022/06/01);4(2):102-103.

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3. Jones SC. Measuring the Wrong Thing the Right Way? Time to Rethink Autism Research Tools. Autism in Adulthood;2022 (2022/06/01);4(2):104-109.

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. Community brief ?Why is this topic important?? Research into the experiences of autistic people is used to inform policy, practice, and community understanding. It is important that autism research respects and reflects autistic voices. Current research often uses scientific instruments that are not consistent with our lived experience of autism. ?What is the purpose of this article?? This article explains why the current approach to research?encouraging the use of existing measures and incremental change?is harmful to autism research and to autistic people. It provides examples of commonly used tools and explains why they are problematic. The article aims at encouraging a discussion into why the findings of autism research are often inconsistent with the experiences of autistic people. ?What personal or professional perspectives do the authors bring to this topic?? I am an autistic adult, the mother of two autistic adults and an autism advocate. I am also an autism researcher with a background in public health and communication. ?What is already known about this topic?? Academic journals aim at publishing papers that present the best and most accurate research projects. Researchers are encouraged to use tools that have been developed and tested in previous studies, because these are considered to be ?reliable? (consistent) and ?valid? (accurate). Researchers are discouraged from developing new measures or making major changes to existing ones. So, it can be hard to publish community-driven research that uses tools developed by autistic people. ?What do the authors recommend?? I recommend that autism researchers ensure that the tools they use to study autism actually measure the experiences of autistic people. I also recommend that we stop relying on existing measures that do not make sense to autistic people and work with autistic people to develop better tools. ?How will these recommendations help autistic adults now or in the future?? These recommendations will help autistic adults by making autism research more relevant and useful. Research that reflects our actual experiences will improve community understanding of autism. It will also lead to better policies and practices that meet the needs and aspirations of autistic people.

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4. Byrne K, Sterrett K, Elias R, Bal VH, McCauley JB, Lord C. Trajectories of Seizures, Medication Use, and Obesity Status into Early Adulthood in Autistic Individuals and Those with Other Neurodevelopmental Conditions. Autism in Adulthood;2021 (2022/06/01);4(2):110-119.

Background: Physical and psychiatric health conditions affect the lives of many autistic adults. However, relatively little is known about individual trajectories in autistic individuals’ physical and mental health from adolescence to adulthood. Methods: This study uses a well-characterized longitudinal sample (n?=?253) to investigate rates of seizures, medication use, and obesity, from early adolescence (age 10 years) into adulthood (age 30 years). Within this sample, 196 participants were diagnosed with autism spectrum disorder (ASD), whereas the remaining 57 participants never received an ASD diagnosis, but, rather, were diagnosed with other neurodevelopmental conditions. Data were collected through parent report questionnaires and in-person interviews and assessments. Results: Seizure onset continued well into adulthood, with two individuals experiencing their first seizure at the age of 25 years. Seizures and neuropsychiatric medication use were both higher for those with lower intelligence quotient (IQs). In addition, medication use increased over time for these individuals, whereas those with higher IQs saw a reduction in medication use with age. Between the ages of 15 to 30 years, the predicted probability of medication use increased from 82% to 88% for those with lower IQs and decreased from 37% to 13% for those with higher IQs. Collectively, almost 70% of all participants in this study were classified as either overweight or obese. Body mass index (BMI) increased throughout adulthood, especially for those with higher IQs. The steepest increase in BMI over time occurred for those with higher IQs who also took antipsychotic medications. Conclusion: Overall, continued risk for developing seizures, high rates of neuropsychiatric medication use, and significant and increasing rates of obesity from adolescence to adulthood underscore the importance of monitoring health issues in autistic individuals and those diagnosed with other neurodevelopmental conditions throughout the lifespan. Community brief Why was this study done? Autistic individuals and those diagnosed with other neurodevelopmental conditions are at risk for many physical health issues from adolescence to adulthood. This includes, but is not limited to, seizure disorders, high rates of medication use, and obesity. Yet, not much longitudinal research exists measuring these health issues throughout the lifespan and, especially, in adulthood. What did the researchers do? The researchers analyzed data from a sample of 253 individuals who lived in North Carolina, Michigan, and Illinois. This sample was recruited almost 30 years ago, beginning the study when they were roughly 2 years old. Some participants had an autism spectrum disorder diagnosis, and some did not, but instead had other neurodevelopmental conditions. The researchers measured changes in medication use, height, and weight beginning in early adolescence (age 10 years) into adulthood (age 30 years). The researchers also tracked seizure occurrences across the life span (beginning at age 2 years up until age 30 years). What were the results of the study? In adulthood, this sample showed high rates of obesity and medication use. For example, almost 70% of this sample was classified as either overweight or obese. In addition, 55% of this sample was taking at least one neuropsychiatric medication in adulthood, and 22% of this sample was taking three different types of medication at the same time. Individuals with higher and lower intelligence quotient (IQs) had different findings over time: obesity increased throughout adulthood for those with higher IQs and medication use increased throughout adulthood for those with lower IQs. Seizures first developed for a group of individuals in adolescence and adulthood. Two individuals experienced their first seizure as late as 25 years of age. What do these findings add to what is already known? Research, and especially longitudinal research, on physical health in autistic adults is limited. Although we know that autistic individuals generally experience h gh rates of obesity, seizure disorders, and medication use, less is known about how these physical health issues change over the lifespan. This study has provided useful information regarding how certain physical health issues change over time, and who these physical health issues impact the most in adulthood. How will these findings help autistic adults now or in the future? The findings in this study identified that, in adulthood, autistic adults experience high rates of physical health issues, including increasing rates of obesity and medication use for certain populations. These findings confirm how important it is for autistic adults to have access to quality health care across the lifespan. We hope that, with these findings in mind, caregivers and health professionals will work to ensure that autistic individuals, from childhood through adolescence and adulthood, will have access and assistance in monitoring these ongoing and persistent health problems.

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5. Pellicano E, Lawson W, Hall G, Mahony J, Lilley R, Heyworth M, Clapham H, Yudell M. “I Knew She’d Get It, and Get Me”: Participants’ Perspectives of a Participatory Autism Research Project. Autism in Adulthood;2021 (2022/06/01);4(2):120-129.

Introduction: Autistic advocates and their supporters have long argued that conventional research practices provide too few opportunities for genuine engagement with autistic people, contributing to social disenfranchisement among autistic people. We recently described one attempt to develop and implement a participatory study in which a team of autistic and nonautistic researchers worked together to gather life histories from late-diagnosed autistic people. In the current study, we sought to understand the impact of this participatory approach on the participants themselves. Methods: We spoke to 25 Australian late-diagnosed autistic adults (aged 45?72 years), who had been interviewed by an autistic researcher using an oral history approach. We asked them about their experience of being involved in that project and the research process more broadly. We thematically analyzed participants’ interviews. Results: Participants responded overwhelmingly positively to the opportunity to tell their life history, considering it illuminating and empowering. While recounting their life history was often described as ?exhausting? and ?draining,? participants also reported feeling ?supported all the way? and agreed ?it was made easier because I had an autistic researcher interviewing me.? One participant went so far as to say that they ?probably would have dropped out [of the project] if it was run by people who weren’t autistic.? Conclusions: These findings demonstrate that the benefits of coproduction to researchers and community partners extend to study participants and to the quality of the research itself. Involving autistic partners in the research process, especially in its implementation, can play a crucial role in enhancing autism research. Community brief Why is this an important issue? Autistic people are often left out of decisions that affect them, including in research. We wanted to change that. We, a group of autistic and nonautistic researchers, worked together to come up with a research project. In that project, we wanted to know more about autistic people who were diagnosed late in their lives. What was the purpose of this study? We wanted to know about their experiences of taking part in the research. We also wanted to understand what it was like for our study participants to tell their life story to another autistic person. What did we do? We spoke to 25 autistic people about their experiences of telling their life history. We asked questions like, ?Can you tell me a bit about why you wanted to share your life history?? and ?What was your overall experience of taking part in this research project?? We interviewed participants for about 25 minutes. What were the results of the study? We found that participants felt good about taking part in this project. They felt supported and were pleased that the project was being run by autistic people. They also told us that telling their story was often painful. However, it was made easier because they had an autistic researcher interviewing them. They also felt that they could share more with this person than with someone who was not an autistic person. What do these findings add to what was already known? This study shows that research that is done together by autistic and nonautistic researchers has a positive effect on participants. What are the potential weaknesses in the study? Most of our participants were well educated, White, and were in some form of work. We do not know if participants’ positive experiences would also happen with other autistic people, including those from different cultural groups. This study was also unusual because it allowed participants to tell their own stories in their own way. That might have made participants more positive about it. How will these findings help autistic adults now or in the future? These findings show how important it is to include autistic people in research. It makes a real difference to the participants and to the quality of the research.

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6. de Broize M, Evans K, Whitehouse AJO, Wray J, Eapen V, Urbanowicz A. Exploring the Experience of Seeking an Autism Diagnosis as an Adult. Autism in Adulthood;2021 (2022/06/01);4(2):130-140.

Background: Emerging research suggests that seeking an autism diagnosis as an adult is usually difficult and time-consuming but brings relief once a diagnosis is made. This study explored the experience of the pathway to an autism diagnosis during adulthood for adults living in Australia. Methods: We conducted a qualitative phenomenological study and interviewed 13 adults who identified as autistic about their pathway to autism diagnosis in their mode of choice. Spoken interviews were transcribed verbatim, and transcripts were analyzed by using a thematic approach. Results: Data analysis resulted in 6 themes and 20 meaning units that described the experiences of adults seeking an autism diagnosis in Australia. These themes involved two interwoven journeys that spanned before, during, and after the diagnostic process. The personal journey involved feeling different, considering autism, and living as autistic, whereas the clinical journey involved missed opportunities, varied diagnostic experiences, and absent supports. Conclusions: Given the potential benefits for adults obtaining a formal autism diagnosis and accessing post-diagnostic supports, it is important that health professionals and governments collaborate to reduce access barriers and ensure adequate services are available. The findings from this study informed the development of Australia’s national guideline for autism diagnosis. Community brief Why is this an important issue? The experience of being diagnosed as autistic as an adult is not well understood, particularly in Australia. Research from other places, such as New Zealand and the United Kingdom, suggests that receiving an autism diagnosis in adulthood is difficult and time-consuming, but brings relief. We do not know whether this is the same for adults in Australia. What was the purpose of this study? This study aimed at exploring the experience of seeking an autism diagnosis during adulthood in Australia. What did the researchers do? We conducted interviews with 13 adults who identified as autistic about their pathway to an autism diagnosis. Three sets of interview questions were used, depending on whether they had already obtained an autism diagnosis, were going through the assessment process, or were self-diagnosed. Adults completed the interview in their mode of choice. Spoken interviews were transcribed word-for-word, and the transcripts were analyzed to identify common themes. What were the results of the study? We identified six themes that described the experiences of adults seeking an autism diagnosis in Australia. These themes involved two related journeys that spanned before, during, and after the diagnostic process. The personal journey involved feeling different, considering autism, and living as autistic. The clinical journey involved missed opportunities, varied diagnostic experiences, and absent supports. Before starting the diagnostic process in adulthood, participants described always feeling different and many missed opportunities to receive an autism diagnosis in their younger years. During the diagnostic process, participants described beginning to consider whether they were autistic and the varied pathways they underwent to confirm this. After the diagnostic process, participants described their experiences of living as autistic and a lack of post-diagnostic supports tailored to their needs. What do these findings add to what was already known? Our findings were similar to previous research findings from other countries, including the complex journey to diagnosis, relief and understanding on identifying as autistic, and lack of post-diagnostic services. However, to our knowledge, this is the first qualitative study to explore the experiences of adults seeking an autism diagnosis in Australia. Further, we included participants who did not have a formal diagnosis of autism. This group of people is often excluded from autism research, and their experiences of seeking an autism diagnosis are largely unknown. What are potential weaknesses in the study? The weaknesses of our study included recruiting a relatively small sample of mostly Caucasian females, and we did not consult with our study participants or other autistic adults to see whether our final themes aligned well with their experience. However, no new findings emerged in later interviews and our findings were similar to international literature. Future research should recruit more diverse groups of autistic adults and involve greater levels of autistic input. How will these findings help autistic adults now or in the future? Our findings informed the development of the ?National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorder in Australia,? a first step toward improving autism diagnosis in Australia.

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7. Pearson A, Rees J, Forster S. “This Was Just How This Friendship Worked”: Experiences of Interpersonal Victimization Among Autistic Adults. Autism in Adulthood;2022 (2022/06/01);4(2):141-150.

Background: The victimization of autistic people by familiar others (interpersonal victimization) is an understudied phenomenon despite suggestions that prevalence rates may be disproportionately high. We know very little about the way autistic people perceive these experiences, and how to support them. The aim of the current study was to explore experiences of interpersonal victimization among autistic adults from their own perspective. Methods: We recruited 43 autistic adults to take part in a qualitative online study, and asked about their experiences of being victimized or taken advantage of by people they know in the past. We analyzed their comments at the semantic level using inductive thematic analysis, from a critical realist perspective. Results: We identified two key themes in the data. The first theme, ?cycles of victimization? highlighted the occurrence of polyvictimization in the sample. The second (?perceptions of victimization?) focused on how these experiences were related to difficulties with trust (of both self and others), the recognition of victimization, and heightened compliance. The participants expressed difficulty with saying no to people, and found it difficult to identify when someone had negative or manipulative intentions. Conclusions: Our findings suggest that autistic adults experience victimization from a range of close others, and may find it difficult to recognize when someone is acting in an abusive manner. Many participants had experienced heightened compliance in response to unreasonable requests from others, however, reasons for this were varied (e.g., fear and desire to avoid confrontation) and require further investigation. These findings have implications for developing supports that enable autistic adults to recognize their own boundaries and advocate for themselves, in addition to helping them to recognize what a healthy relationship looks like. Community brief Why was this study done? We think that many autistic people experience being hurt by people they know. This can include both physical harm such as hitting, and emotional harm such as being called horrible things. We currently know very little about these experiences, even though we think it happens a lot. What was the purpose of this study? The purpose of this study was to find out more about the experiences of autistic people who have been hurt by someone they know, from their own point of view. What did the researchers do? Using an online survey, we invited autistic adults who had been hurt by someone they know to write about what had happened to them from their own point of view. Forty-three autistic people wrote about their experiences and we analyzed these data by reading what they had said and looking for patterns (themes) across people. What were the results of this study? Many of the participants told us that they had been hurt more than once, by different people (e.g., their parents, and people they thought were friends). Some participants said that they found it difficult to tell whether someone is treating them badly, and to trust their own judgment about other people’s behavior. Some people said that they felt like they had do what other people told them to do. Some did this to avoid getting other people into trouble, whereas others did it because they were scared of what would happen if they said no. What do these findings add to what was already known? Previous studies have shown that lots of autistic people have been hurt by people they know, and that this has a negative impact on their mental health. Researchers have also asked autistic people what might put them at risk of being hurt by people they know, and how to prevent it. To our knowledge, this is the first study to directly ask autistic people about their own experiences of being hurt by people they know, and highlights what they feel is important for us to know about it. What are potential weaknesses in this study? We do not know very much about the people who took part aside from their age and gender (e.g., what their race or ethnicity is), nd we do not know much about the people who victimized them (e.g., whether they were neurotypical or autistic themselves), or exactly when it happened. How will these findings help autistic people now or in the future? The findings from this study could be used to think about how we can support autistic people in saying no if someone tells them to do something they do not want to do. They can also be used to find ways to help people to recognize when other people are being hurtful. Finally, we hope that reading this study will make other researchers and practitioners interested in learning how to support autistic people who have been hurt by people they know.

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8. Hume R. Show Me the Real You: Enhanced Expression of Rogerian Conditions in Therapeutic Relationship Building with Autistic Adults. Autism in Adulthood;2022 (2022/06/01);4(2):151-163.

Background: Research in psychotherapy and counseling theory has shown the importance of a strong therapeutic relationship. However, in the context of working with autistic adults, the relationship appears to be de-emphasized, or ?different approaches? are recommended without specifying these. Neglect of relationship building may contribute to autistic adults’ negative experiences with health care professionals identified in previous studies. Methods: I interviewed 17 autistic adults about their relationship building experiences with a wide range of professionals primarily from mental and medical health backgrounds. I also interviewed two mental health counselors and one psychologist who had experience working with this client group and had been recommended by autistic participants. I elicited best practice recommendations from all participants. I analyzed the data in an interpretive?interactionist framework and present them through creative analytic practice. Findings: I address one major theme in this article: the importance of Rogerian/person-centered relationship conditions. All had to be practiced in an enhanced way: (1) Enhanced congruence could be demonstrated through therapist self-disclosure and refraining from phony relationship building ?techniques? such as vocal adjustments. (2) Enhanced empathy could be demonstrated through genuine listening and accurate interpretation; however, interpretation needed to be phrased tentatively. (3) Enhanced unconditional positive regard could be demonstrated through explicit verbal expression, practical demonstration, and remembering. Conclusions: Results largely mirrored research with non-autistic populations: different approaches were not needed for relationship building. Participants emphasized the importance of Rogers’ person-centered conditions and described pivotal relationship building moments associated with enhanced expression of these conditions. Community brief Why was this study done? Previous studies have reported that autistic adults often do not experience good relationships with their mental and medical health care professionals, feeling misunderstood or patronized. This is a problem, as strong relationships are essential for good outcomes in many settings. Limited resources exist for professionals to improve their relationship building skills with this client group. The few texts that address this question at all do so only briefly. They either recommend different approaches (but do not specify these) or suggest that relationship building is too hard to be worth the effort with autistic adults. No research has yet engaged autistic adults to ask their recommendations for best practice in this area. What was the purpose of this study? This study sought answers to three main questions: 1.What makes a good working relationship from the point of view of autistic adults? 2.How do successful professionals establish relationships with their autistic clients? 3.What do autistic adults want professionals to do to improve relationships? What did the researcher do? The researcher asked 17 autistic adults and 3 non-autistic mental health professionals with expertise in autism about their experiences and recommendations for improving relationship building. What did the researcher find? Several aspects were important, but this article discusses only one aspect due to a lack of space: using the same relationship building approaches as with non-autistic clients, but in an enhanced way. 1.Professionals had to be authentic in all their interactions with autistic clients. If they were ?fake,? many participants became confused, as they could tell something was wrong. They could only trust professionals who genuinely cared about them. 2.Professionals had to show empathy by listening to their clients without trying to advise or ?fix? the person. Participants also appreciated if professionals showed understanding of their experience by interpreting it correctly. 3.Participants needed to feel liked by their professionals. Professionals could show this liking best by: expressing t verbally, demonstrating it in a practical way (such as offering a cup of tea, putting clients in touch with support networks in the community, or finding extra resources for them), or remembering client details (such as access needs or interests). How will knowing this help autistic adults? Many of those in the health care workforce want to learn how to engage better with their autistic adult clients. This study aims to lay the groundwork for a future resource for professional development. If professionals are empowered to build better, more trusting relationships with their autistic adult clients, health care outcomes may be improved. What are the weaknesses of this study? This study had a relatively small number of participants. Therefore, the experiences they discussed may not reflect the experiences of the larger autistic community. Professionals should adjust their relationship building approach to each client’s preferences.

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9. Mason D, Stewart GR, Capp SJ, Happé F. Older Age Autism Research: A Rapidly Growing Field, but Still a Long Way to Go. Autism in Adulthood;2022 (2022/06/01);4(2):164-172.

Background: There is a paucity of research involving older autistic people, as highlighted in a number of systematic reviews. However, it is less clear whether this is changing, and what the trends might be in research on autism in later life. Methods: We conducted a broad review of the literature by examining the number of results from a search in three databases (PubMed, Embase, PsycINFO) across four age groups: childhood, adolescence, adulthood, and older age. We also examined the abstracts of all the included articles for the older age group and categorized them under broad themes. Results: Our database search identified 145 unique articles on autism in older age, with an additional 67 found by the authors (hence, the total number of articles in this review is 212). Since 2012, we found a 392% increase in research with older autistic people, versus 196% increase for childhood/early life, 253% for adolescence, and 264% for adult research. We identify 2012 as a point at which, year-on-year, older age autism research started increasing, with the most commonly researched areas being cognition, the brain, and genetics. However, older adult research only accounted for 0.4% of published autism studies over the past decade. Conclusions: This increase reflects a positive change in the research landscape, although research with children continues to dominate. We also note the difficulty of identifying papers relevant to older age autism research, and propose that a new keyword could be created to increase the visibility and accessibility of research in this steadily growing area. Community brief Why is this topic important? Autistic children grow into autistic adults, and autistic adults grow old. However, there is very little research about older autistic people. This is important so we know how to support older autistic people. What is the purpose of this article? We wanted to examine how autism research activity has changed over time with respect to four life stages: infancy, childhood and adolescence, adulthood, and older age. We then more closely looked at older age autism research to point out important gaps where more research is needed. What did the authors do? We conducted a broad review of the literature on autism and described what life stages are studied in published research. We looked at how the amount of research on different life stages has changed over time. We further examined studies focused on older age and summarized the topics covered. What did you find about this topic? Our review estimates that only 0.4% of autism-related publications over the past decade are about older autistic people. We identify 2012 as a turning point since when the number of studies has markedly increased year-on-year. Encouragingly, the percentage increase in autism research over the past decade is greater for older age research (392% rise) than childhood/early life (196%), adolescence (253%), or adulthood research (264%). What do the authors recommend? We suggest that there are many research areas that need addressing. Specifically, more research is needed on social isolation and the practicalities of living arrangements for older autistic people, as well as more studies including older autistic adults with intellectual disability. How will these findings help autistic adults now or in the future? We do not think that our findings will immediately benefit the lives of autistic people. However, we do hope to draw attention to topics where research is needed to improve the lives of autistic older people. We also suggest that a new keyword could be created that researchers could then include in their articles to help autistic people and those interested in autism and aging find relevant writings.

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10. Rose K, Michael C. Re: Older Age Autism Research: A Rapidly Growing Field, but Still a Long Way to Go by Mason et al.; DOI: 10.1089/aut.2021.0041 (Previously titled: The Rising Tide of “Gerontautism”). Autism in Adulthood;2022 (2022/06/01);4(2):173-175.

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11. Mason D, Stewart G, Capp S, Happé F. Response to Rose and Michael; doi: 10.1089/aut.2022.0023. Autism in Adulthood;2022 (2022/06/01);4(2):176-176.

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12. Correction to: Advancing the Personalization of Assessment and Intervention in Autistic Adolescents and Young Adults by Targeting Self-Determination and Executive Processes by Shogren, et al. Autism Adulthood 2021;3(4):289-299; doi: 10.1089/aut.2021.0010. Autism in Adulthood;2022 (2022/06/01);4(2):177-177.

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