Open access article: https://pubmed.ncbi.nlm.nih.gov/33397133/ 

Abstract

Little is known about how parents talk about autism with their autistic children, particularly among families in which both a parent and child are autistic. Using an online survey, we gathered quantitative and qualitative data from 34 autistic parents (most of whom had told their children about their diagnosis) to address this knowledge gap. There was considerable overlap between the views and experiences of the autistic parents in this study and the largely non-autistic parent samples in previous research. Specifically, parents emphasised the importance of being open and honest about the diagnosis, disclosing the diagnosis as early as possible, individualising discussions to children’s needs and framing the diagnosis positively. There were, however, areas in which the views and experiences of the current sample differed from previous research on non-autistic samples. First, our sample of autistic parents outlined the benefits of their own experiential expertise, which they felt resulted in heightened understanding and empathy with their children. Second, our sample tended not to express concerns about disclosure potentially having a negative impact. Finally, our participants did not express a want or need for professional support with disclosure. Instead, they reported feeling well equipped to support their children using their own knowledge and lived experience.

Lay abstract

Previous research examining how parents talk about autism with their children has tended to focus on parents who are not autistic themselves. We collected information on this topic from 34 autistic parents of autistic children (most of whom had told their children about their diagnosis). We found similarities, but also differences, between the views and experiences of autistic parents in this research and those reported in previous research (in studies of largely non-autistic parents). Similarities include the following: it is important to be open and honest about the diagnosis; the diagnosis should be introduced/discussed as early as possible; discussions should be tailored to each individual child’s needs; and we should not overlook the challenges associated with autism, but it is important to focus on positive aspects too. Differences include the following: autistic parents used personal experiences in conversations about autism, which was felt to result in increased understanding and empathy with their children; autistic parents overwhelmingly focused on more positive aspects of an autism diagnosis; our sample did not express concerns that discussions could have negative consequences too (e.g. making children more anxious); and autistic parents did not want or need professional support to talk about autism with their children (instead, they felt confident in using their own knowledge/experiences to guide discussions).

Citation: Crane L, Lui LM, Davies J, Pellicano E. Autistic parents' views and experiences of talking about autism with their autistic children. Autism. 2021 May;25(4):1161-1167. doi: 10.1177/1362361320981317. Epub 2021 Jan 4. 

Open access article: (https://www.tandfonline.com/doi/full/10.1080/08856257.2022.2037823 )

Abstract

This overview, or review of reviews, synthesises the contributions of influential research on education of autistic pupils to a) characterise this research and b) analyse the potential of this research to further inclusive education. The 80 most-cited reviews in Web of Science targeting research on education of autistic pupils were analysed. From the standpoint of inclusive education, several shortcomings in the research field were identified: First, the reviews very seldom explicitly address inclusion. Second, when they do, inclusion is narrowly understood. Third, only about half of the reviews concerned regular education. Finally, most reviews report positive effects but provide limited knowledge about what methods are most useful for specific sets of pupils and in which situations. The majority explores how to reduce symptoms of autism and how to foster socio-communicative skills. The Inclusive Education Model (IEM) was developed to analyse how different types of research, including research not specifically addressing inclusion, provide different forms of knowledge about how to increase inclusive schooling. The findings are discussed in relation to needs for future research on inclusion and it is argued that the field would benefit from more explicit orientations towards inclusive education. The benefits and shortcomings of IEM are discussed. 

Citation: Ingrid Olsson & Claes Nilholm (2022) Inclusion of pupils with autism – a research overview, European Journal of Special Needs Education, DOI: 10.1080/08856257.2022.2037823

Open access article: (https://eprints.soton.ac.uk/441631/)

Abstract

Involving students on the autism spectrum in decision-making about their education is good practice for inclusion and mandated by the Special Educational Needs and Disability Code of Practice in England. This article reports on two linked studies investigating the perspectives of 12 secondary mainstream students on the autism spectrum aged 11–15 years, and their teachers (n = 10), about teaching and support. Students and teachers agreed that staff members were more likely to focus on the needs of the class rather than the needs of the individual student, which could be very difficult to navigate successfully. In addition, students emphasised the importance of feeling understood and supported in school. However, differences in sensory perceptions and communication meant that students sometimes felt misunderstood by staff, leading to feelings of hurt and frustration. This suggests it is important to understand the needs of individual students on the autism spectrum, and adapt teaching and pastoral strategies accordingly, in order to promote an appropriately inclusive educational environment.

Citation: Hummerstone, Harriet Kate Mairead and Parsons, Sarah       (2021)     What makes a good teacher? Comparing the perspectives of students on the autism spectrum and staff.       European Journal of Special Needs Education, 36 (4), 610-624.       

Open access article:  ( https://pubmed.ncbi.nlm.nih.gov/31939082/ )

Abstract

Many students with autism spectrum disorders (ASDs) attending higher education drop out prematurely. The predictive value of self-reported daily executive functioning (EF) and (cognitive) performance-based EF (mental flexibility and working memory) for academic progress was evaluated in 54 young adults with ASD (Mage = 22.5, SD = 2.4, 72% male). Regression analyses showed that autism symptom severity explained 12% of variance in academic progress, which was raised to 36% by adding self-reported daily EF, and to 25% by adding performance-based EF. It is suggested that EF is a candidate marker for academic progress in higher education students with ASD and a candidate target for early intervention.

Citation: Dijkhuis R, de Sonneville L, Ziermans T, Staal W, Swaab H. Autism Symptoms, Executive Functioning and Academic Progress in Higher Education Students. J Autism Dev Disord. 2020 Apr;50(4):1353-1363. doi: 10.1007/s10803-019-04267-8. PMID: 31939082; PMCID: PMC7101287.

Open access article: (https://pubmed.ncbi.nlm.nih.gov/33567892/)

Abstract

Prior research has identified the divergence across different stakeholder groups in the semantic choice of language when describing autism, as members of the autism and autistic community preferred to use identity-first language (autistic person), whereas professionals were more likely to use person-first language (person with autism). This study explored 803 e-learners’ responses from their comments across two massive open online courses on autism education held between 2017 and 2019. Comments from members of the autistic and autism community and professionals were analysed together using thematic analysis, to identify shared opinions on what, why and how language should be used when describing autism across stakeholder groups. Learners agreed that autistic individuals should guide others on which terminology to use when describing autism and that the diagnostic label is a way to facilitate understanding across stakeholder groups and help the individual gain access to support. Semantic language choices may matter less as long as the person’s difficulties are clearly acknowledged, with adaptations made to meet their specific needs. Adding to a growing body of literature on terminology use in autism research and practice, we highlight that consideration for semantic choice of language use should focus on communicating an individual’s strengths and differences.

Lay abstract

Within the neurodiversity movement, one recent divergence is in the semantic choice of language when describing autism, as members of the autism and autistic community preferred to use identity-first language (autistic person), whereas professionals were more likely to use person-first language (person with autism). This study explored 803 e-learners’ responses from their comments across two massive open online courses on autism education held between 2017 and 2019. Learners agreed that autistic individuals should guide others on which terminology to use when describing autism, and although identity-first language acknowledges autism as part of an individual’s identity, it can also conjure up negative stereotypes and be stigmatising. Although family, friends and professionals highlighted that the diagnostic label is a way to facilitate understanding across stakeholder groups and help autistic individuals gain access to support, autistic self-advocates found the process of disclosing autism as a form of disability to conflict with their sense of identity, and broader terms such as ‘autism spectrum’ failed to capture individual strengths and weaknesses. Semantic language choices may matter less as long as the person’s difficulties are clearly acknowledged, with adaptations made to meet their specific needs. Adding to a growing body of literature on terminology use in autism research and practice, we highlight that language used when describing autism should follow the autistic individual’s lead, with the primary focus on communicating an individual’s strengths and difficulties, to foster a sense of positive autism identity and inclusivity, and enable access to appropriate support.

Citation: Lei J, Jones L, Brosnan M. Exploring an e-learning community's response to the language and terminology use in autism from two massive open online courses on autism education and technology use. Autism. 2021 Jul;25(5):1349-1367.