Evaluating a new supported employment internship programme for autistic young adults without intellectual disability.

LAY ABSTRACT: Internships designed for autistic people can help them to find employment, but there is little research about the experiences of those involved with internship schemes. To learn more about a new paid internship scheme in the United Kingdom, the Employ Autism network, we interviewed 19 interns, who were autistic young adults without intellectual disability taking part in one of eight different internships. We also interviewed 22 employers (who worked with the interns), and 10 parents (who supported their children in the internship). The interns, employers and parents told us that the Employ Autism network was a valuable experience that helped the interns become more confident. Also, the parents said it helped the interns become more independent. All the groups said the Employ Autism network removed common barriers to employment, and interns and parents said it would help interns get a job in future. Employers and interns said they understood each other better during the internship, and employers said the internship made them think about how their organisations might have accidentally had barriers in place that could stop autistic people getting employed (barriers that they wanted to address in future). However, all groups said some expectations of the internship were not met. These findings suggest the Employ Autism network is helpful for autistic young adults without intellectual disability and employers, but that there are ways that the internships could be improved in future. We discuss the lessons we can learn from the Employ Autism network that might help others who are thinking about setting up, or getting involved in, similar internship schemes.

Evaluating the online delivery of an autistic-led programme to support newly diagnosed or identified autistic adults.

Background & aims: Exploring Being Autistic is an autistic-led group-based programme providing psychoeducation and peer support to newly identified/diagnosed autistic adults. In 2020, due to social distancing measures implemented following the coronavirus pandemic, Exploring Being Autistic was adapted for online delivery. Here, we aimed to replicate previous research into the in-person delivery of Exploring Being Autistic, to determine whether similar results were obtained when the programme was delivered online. Further, we aimed to identify the unique opportunities and challenges that online delivery afforded. Methods: We used a community-based participatory research (CBPR) approach, whereby the autistic developer and facilitator of Exploring Being Autistic worked collaboratively with a team of academic researchers throughout the research process. Together, we evaluated two iterations of the online Exploring Being Autistic programme, involving 16 attendees. Attendees completed questionnaires before, during and after the programme. Attendees were also invited to participate in two post-programme (group or individual) interviews: one following the completion of the programme (time one) and another 6-8 months later (time two). Attendees were included in the research if they completed at least one questionnaire or interview. Data were analysed qualitatively, using reflexive thematic analysis. Results: Experiences of participating in the programme tended to be positive. Participants appreciated the autistic-led nature of the programme, found unity in the diversity of the group, and developed a positive and practical outlook as a result of the programme. Further analyses of our data revealed mixed views regarding the online delivery of the programme. Opportunities of online delivery were noted, such as this mode of participation reducing cognitive load, enabling the programme to be accessible to more participants, and fostering meaningful social connections among participants. However, technology and practical issues were felt to cause barriers, and some human aspects of participation were felt to be 'lost in translation' (e.g., in breakout groups). Conclusions: The online delivery of the Exploring Being Autistic programme yielded similar results to previous, in-person evaluations of the programme. While we identified positive aspects of online delivery, this mode did not entirely suit everyone's needs. Implications: From the current findings, we can make several recommendations to develop online support for autistic people. First, flexibility is key. To make support accessible and inclusive to a broad range of autistic people, the option for attendees to engage in-person, online or in hybrid formats should be considered. Second, if delivering support online, the use of breakout rooms should be carefully considered. While participants appreciated the opportunity to meet different people, some participants found the unpredictability and lack of scaffolding associated with breakout rooms challenging. To mitigate these challenges, groups could be pre-determined and shared with the attendees in advance (although consideration should be given to how the groups 'fit' together, and whether groupings should be changed at set intervals). Gentle warnings should also be given to those in breakout rooms, to alert them of the need to re-join the main group. Finally, support with technological aspects relating to engagement should be prioritised.

All views my own? Portraying the voices of children with complex neurodevelopmental disorders in statutory documents.

Portraying the voices of children with complex genetic neurodevelopmental disorders about their health, care and education needs in their statutory documents is a challenging task. This study examined the ways by which the perspectives of children diagnosed with Down Syndrome (DS) and Williams Syndrome (WS) are portrayed in their statutory documents, namely the Education Health and Care plans, in England. Using the International Classification of Functioning Disability and Health for Children and Youth, we analysed the content of Section A of the Education Health and Care plans of 52 children and young people with WS and DS, between 5 and 26 years of age. A minority of statutory documents (7.7 %) explicitly reported the children's voices, and many failed to document how the children's voices were accessed. Only a few specific or evidence-based tools to access their voices were reported. Most statutory documents portrayed parental rather than children's voices concerning aspects of their health, care, and education. This study highlights the need to establish the use of evidence-based tools for ascertaining the voices of children with complex neurodevelopmental disorders and including them in decision making about their health, care and education needs.

Toward Empathetic Autism Research: Developing an Autism-Specific Research Passport.

Autistic adults sometimes report negative experiences of research participation. People have developed passports or toolkits in other areas where community members report dissatisfaction (e.g., health care, criminal justice). We created a Research Passport that autism researchers and autistic adults could use to support the inclusion of autistic adults as research participants. We designed and developed the Research Passport via an iterative design process. First, we gathered ideas for a Research Passport via focus groups with autistic adults without an intellectual disability (ID) (n = 9) and autism researchers (n = 6; one of whom was autistic). We found that the Research Passport (1) was a useful idea, but not a panacea for all issues in autism research, (2) needed to be universal and flexible, and (3) could have a broad remit (e.g., to record scores on commonly used standardized tasks that could, with permission, be shared with different researchers). Next, we conducted a preliminary evaluation of a prototype Research Passport via usability testing in three ongoing research projects. Nine autistic participants without an ID provided feedback on the Research Passport (via a survey), as did three nonautistic researchers (via interviews). We found that the Research Passport (1) promoted positive participant-researcher relationships, (2) provided a structure and framework to support existing practices, and (3) needed to be adapted slightly to facilitate usability and manage expectations. Overall, the Research Passport was useful in promoting empathetic autism research. Further design and development of the Research Passport are warranted. Lay summary: Why was this research developed?: Autistic adults taking part in research do not always have good experiences. An autistic member on our team thought that a Research Passport could help improve people's experiences. This idea was inspired by "passports" or "toolkits" that autistic people can use when visiting professionals such as doctors (so the doctor knows about the person and how to support them).What does the Research Passport do?: The Research Passport lets autistic people tell researchers about themselves before taking part in a research study. Autistic people can decide how much, or how little, they tell the researcher. Autistic and/or nonautistic researchers can use the Research Passport to try and make sure that their autistic participants have good experiences when taking part in research.How did the researchers evaluate the Research Passport?: First, nine autistic adults (who did not have an intellectual disability) and six autism researchers took part in group discussions. We asked what they thought about our Research Passport idea and what it should include. We made a Research Passport mock-up based on these discussions. Nine autistic participants who did not have an intellectual disability used the mock-up in one of three university research projects. Autistic participants completed a survey to tell us good and not-so-good things about the Research Passport. Also, we interviewed three researchers about using the Research Passport (asking what they liked and what could have been better).What were the findings?: Autistic adults and researchers involved in designing the Research Passport thought the Research Passport (1) could be useful but could not solve all problems in autism research, (2) needed to be suitable for many different people, and (3) could have many different benefits (e.g., collecting participants' scores on tests that researchers use a lot, so participants do not have to keep doing the same tests each time they take part in a new research study).Autistic adults and researchers used the Research Passport in ongoing studies and told us that it (1) led to good relationships between participants and researchers, (2) helped researchers make sure that the way they did their research was acceptable, and (3) was useful. However, participants need to be told what the Research Passport can/cannot help them with.What were the weaknesses of this project?: This study involved a small group of autistic adults and researchers, and the results may not be the same with autistic adults and researchers who have different needs. Also, participants said the Research Passport was not very easy to complete, and a bit long. We need to change the Research Passport so that a wider range of autistic people (like those with intellectual disability) can use it.What are the next steps?: The Research Passport needs to be professionally designed so it is easier to be used by a wider range of autistic people. A bigger evaluation of the Research Passport could allow us to test it with more participants and in more research studies.How will this work help autistic adults now or in the future?: Using the Research Passport could, with some changes and alongside other supports, improve the experience of autistic adults taking part in research.

Supporting Newly Identified or Diagnosed Autistic Adults: An Initial Evaluation of an Autistic-Led Programme.

Sixteen adults (diagnosed or self-identified as autistic) participated in one of two iterations of a ten-week autistic-led programme, aimed at helping autistic adults learn more about autism within a peer group context. Motivations for taking part in the programme included a desire for: (1) exploration of autism; (2) empowerment; and (3) the development of practical strategies and coping mechanisms. Interviews were conducted upon completion of the programme and again 6 months later. Using thematic analysis, three themes were identified: (1) appreciation of the autistic-led nature of the programme; (2) unity in diversity; and (3) developing a positive, practical outlook on autism. These promising initial results highlight the value of autistic-led peer support for those recently diagnosed/identified as autistic.

The Underreporting of Vision Problems in Statutory Documents of Children with Williams Syndrome and Down Syndrome.

Vision problems can lead to negative developmental outcomes. Children with Williams syndrome and Down syndrome are at higher risk of vision problems, and these are less likely to be detected due to diagnostic overshadowing and difficulty accessing eye-care. Education, Health and Care (EHC) plans are statutory documents, introduced by the Children and Families Act 2014 in England, with the intention of integrating provision across these domains. Vision issues should be reported in these plans, and recommendations made about appropriate adjustments for them. We analysed the EHC plans from 53 children with Down or Williams syndrome. Our results showed significant underreporting, especially for children with Williams syndrome, and little explanation of what adjustments should be made. We also report pockets of good practice.

Online and Face-to-Face Performance on Two Cognitive Tasks in Children With Williams Syndrome.

There has been an increase in cognitive assessment via the Internet, especially since the coronavirus disease 2019 surged the need for remote psychological assessment. This is the first study to investigate the appropriability of conducting cognitive assessments online with children with a neurodevelopmental condition and intellectual disability, namely, Williams syndrome. This study compared Raven's Colored Progressive Matrices (RCPM) and British Picture Vocabulary Scale (BPVS) scores from two different groups of children with WS age 10-11 years who were assessed online (n = 14) or face-to-face (RCPM n = 12; BPVS n = 24). Bayesian t-tests showed that children's RCPM scores were similar across testing conditions, but suggested BPVS scores were higher for participants assessed online. The differences between task protocols are discussed in line with these findings, as well as the implications for neurodevelopmental research.

Views of professionals about the educational needs of children with neurodevelopmental disorders.

BACKGROUND: Professionals play a key role in supporting children with special educational needs in schools. However, the views of those working with neurodevelopmental disorders are less known. AIMS: This study examined the views of professionals (including teachers, teaching assistants, educational psychologists, speech and language therapists, physio and occupational therapists etc.) working with children with Williams Syndrome (WS), Down Syndrome (DS) or with Autism Spectrum Disorders (ASD) in terms of how informed professionals are about the disorder and their views about the type of support these children need to be receiving. METHODS AND PROCEDURES: Professionals working with 77 children with ASD, 26 with DS and 38 with WS completed an online questionnaire. OUTCOMES AND RESULTS: Professionals in all three groups highlighted relevant areas of difficulty for these children, but they did not recognise some of the less phenotypical difficulties that children with a specific disorder may experience. In addition, there was a disconnect between the difficulties identified by the professionals and the type of specialist support that may be necessary. CONCLUSIONS AND IMPLICATIONS: Although professionals have a lot of knowledge about the specific neurodevelopmental disorders, further evidence-based training would allow more effective support for children with neurodevelopmental disorders in the classroom but also equip professionals better and raise their confidence in meeting these children's needs.

Comparing parental stress of children with neurodevelopmental disorders: The case of Williams syndrome, Down syndrome and autism spectrum disorders.

BACKGROUND: Although parental stress is higher for children with neurodevelopmental disorders (NDs), it is unclear how this stress compares to more common NDs. The current study compared stress in parents of children with Williams syndrome (WS), Down syndrome (DS) and autism spectrum disorders (ASD). The impact of individual and contextual factors was also explored. METHOD: Parents of children with WS (n = 107), DS (n = 79) and ASD (n = 79) completed a background questionnaire, a parental stress questionnaire and a satisfaction with life questionnaire. RESULTS: Although all groups displayed similar levels of parental stress, the factors that influenced this stress differed between the groups. There were also differences for life satisfaction and relationships between parental stress and individual and contextual factors. CONCLUSIONS: Although parents of children with NDs are not at an increased risk of parental stress, the results suggest that interventions should be syndrome-specific.

Parental views on special educational needs provision: Cross-syndrome comparisons in Williams Syndrome, Down Syndrome, and Autism Spectrum Disorders.

BACKGROUND: The current study examined parents' views about their child's educational provision for children with Williams syndrome (WS), Down syndrome (DS), and Autism Spectrum Disorders (ASD). AIMS: This cross-syndrome comparison explored the specific and general difficulties that parents of children with neurodevelopmental disorders experience about their child's educational provision. METHODS AND PROCEDURES: Parents of children aged 4-18;11 years old, including 99 with WS, 88 with DS, and 82 with ASD completed a survey. OUTCOMES AND RESULTS: Children with DS were more likely to access mainstream settings and 1-to-1 support compared to those with WS and ASD. Parental satisfaction was lowest for those with ASD but all parents mentioned concerns about professionals' knowledge of how to support children with special educational needs and disabilities (SEND). There were also group differences for access to specialist support but overall access to occupational therapy and mental health was low. CONCLUSIONS AND IMPLICATIONS: In contrast to previous studies, educational provision and satisfaction with educational provision are syndrome-specific. These results also highlight the need for training and raising awareness about the specific needs of children with neurodevelopmental disorders. In addition, our findings suggest improved communication between parents and the school is required about the type of support children with SEND are receiving.

Addressing the Educational Needs of Children with Williams Syndrome: A Rather Neglected Area of Research?

Williams syndrome (WS) is a rare neurodevelopmental disorder associated with physical health problems, limitations in cognitive abilities and increased risk of mental health difficulties. This profile of complex needs may make it challenging to support children with WS in schools. Surprisingly, in the current international move for inclusion, limited research exists on the educational provision and academic achievements of children with WS, including the non-existing literature on their voices and the perspectives of key stakeholders. This letter calls for additional research on the risk and protective factors associated with the educational outcomes of these children, the perspectives of the children themselves and the development of the evidence-base about the effectiveness of education intervention programs.