Autism and cultural diversity

A brightly coloured logo in the style of a jig saw puzzle for Autism Awareness.People with autism are speaking out, and we are learning more about neurodiversity through practice and research. Consequently, it’s time to look at who is doing the practice and research. Is the family’s cultural background taken into account? If so, do researchers and practitioners know how to adapt? A journal article from the UK sheds a little light on the subject. It’s open access, but you have to request a copy of the paper. The title of the paper is, Autism in Black, Asian and Minority Ethnic Communities: A Report on The First Autism Voice UK Symposium

Abstract:  Little is known about the way autism is interpreted and accepted among the Black, Asian and Minority Ethnic (BAME) populations in the United Kingdom (UK). This report summarises a symposium on autism in the UK BAME community in 2018 or-ganised by Autism Voice UK, Participatory Autism Research Collective (PARC) and the Critical Autism/Disabilities Studies Research Group (CADS) at London South Bank University (LSBU).
The stance a family or community take about a condition like autism is influenced by their cultural background. The aims of the symposium were to highlight different perspectives about autism in BAME communities and to preserve the cultural digni-ty of the community in supporting autistic members. Beliefs about autism, diagnosis, acceptance and support for autistic people from a specific cultural perspective of BAME communities must be cautiously interpreted by autism professionals because beliefs vary among different cultural groups.
Thematic analysis of feedback from participants yielded the following foci. Firstly, cultural, ethnic and religious sensitivities were important to participants who felt that these were often ignored by non-BAME professionals. Secondly, the need for col-laboration to improve autism awareness within the community and understanding by professionals of the intersectionality between autism and identity in BAME fami-lies was prioritised. Thirdly, issues around feelings of stigma were common, but del-egates felt that these were not well understood beyond people identifying as BAME. An action plan was created which highlighted raising public awareness through community engagement, improving access to information for parents, and culturally aware autism education for professionals and BAME communities.

Designing inclusive surveys

Picture of a hand holding a pen and filling in boxes on a survey formWe all know that no matter how objective we try to be, biases exist. Researchers try to avoid them when they design surveys. But it isn’t easy as bias is by nature invisible to the owner. So a bit of help is handy. Using a screening survey to hire people can disadvantage people from diverse backgrounds for several reasons. Most researchers know the usual pitfalls, but perhaps not those relating to ethnic diversity and cognitive differences. Or for people with disability. A really helpful part of this short article is the reference list. Here are just two items:

A Catalog of Biases in Questionnaires includes sources of bias, issues with questionnaire design, and problems with wording, language use, and formatting, plus more. There’s lots of examples too. By Choi, B. C., & Pak, A. W. (2005)

Another good one is about integrating universal design into questionnaires. The focus is on people with learning disabilities. Of course, this also suits people who find reading English as a second language difficult as well. So the authors recommend that instead of making accommodations for people with learning disabilities, the questionnaire should be designed to suit all participants. Lots of good information here. By Goegan, et al, (2018). 

The title of the article is,  Removing Bias from a Hiring Survey for a Diverse Applicant Pool.  

 

Going outside for inclusion: An education perspective

Four people paddle their brightly coloured canoes .The current theory and practice of outdoor environmental education is failing to include the voices of marginalised people and communities. So writes Karen Warren and Mary Breunig. In a thoughtful paper they argue that the historical background of white privileged males in this field still underpins current thinking. The arguments and thinking in this paper could be applied in other educational settings and the broader community. At the end of the paper they advise that instructors should use the language that students use to self-identify:

“Critically conscious use of language in educational environments can prevent the othering of students who self-identify outside normative boundaries. Asking all participants to share their preferred gender pronouns can prevent the misgendering of students. Mirroring the language that students use to name their identity allows the educator to advocate for inclusion. In a canoe trip for queer students one author recently led, participants were given an opportunity to self identify if they chose to. Even within the queer community, there was a diversity of identity – gender non-binary, lesbian, questioning ally, and trans- and cisgender gay were some of the responses. Educators aware of the power of language to oppress by renaming, disnaming, and misnaming participants will consider adopting the words students use to refer to themselves.”

The title of the easy to read paper is, Inclusion and Social Justice in Outdoor Education. It covers gender, race and ability from a social justice perspective.

Interacting with Interaction Design

Two men in dark suits stand in front of an interactive whiteboard showing a webpage with lots of information.Higher education institutions teaching interaction design are not producing graduates skilled at producing accessible interaction experiences. An article from Norway reports on the investigation of study programs to see what level of interaction design is included. Few programs include universal design expertise. And graduates are not necessarily conversant with legal and ethical accessibility responsibilities. This is a concern given that we live in a digital world and we all need accessible user experiences. An important finding and it would be good to find out if this is the case in higher education institutions in other countries.

In a nutshell, interaction design is about shaping software so that the end user understands where to find information.

Abstract
The interaction designer plays an important role in facilitating high-quality interactions and accessible user experiences. Currently, interaction designers have diverse and often interdisciplinary backgrounds, in which may create recruitment challenges for the industry. It is also a likely contributory factor to reported challenges on student recruitment to interaction design (IxD) programs – and consequently the reported industry shortage for IxD skillsets. Thus, we need to better understand the interaction designer’s expertise and skills. Facing this fact, the present study provides analysis of Norwegian higher educational (HE) programs within IxD. We investigate in-depth what characterizes the programs, and describe their current content, focus and organization. Overall, the programs educating interaction designers are quite heterogeneous. One of the main finding is that few programs include adequate universal design expertise, and graduates are as such not necessarily conversant with their legal and ethical responsibilities as IxD professionals. We also find a discrepancy between online program presentation and actual content. The paper concludes that added work is needed to alleviate an inadequate articulation of IxD expertise, graduates skillsets, and better support academic and industry recruitment.

 

This is Universal Design

Architectural drawings and a laptop.Making universal design standard practice is something the Center for Inclusive Design and Environmental Access (IDeA) has been pursuing for  almost 40 years. But there is still a way to go. To improve acceptance and application of UD, IDeA has a new research-backed assessment and certification program. It takes you through the entire process, from planning the project, through building design, and including facility operation. 

Design solutions and best practices gathered over the life of IDeA underpin the course units of a program called isUD™, or innovative solutions for Universal Design. Ed Steinfeld said, “This is the first recognition program to provide a comprehensive approach to user centered design, including attention to usability, wellness and social relations”. You can read more from the University at Buffalo Media release, which has links to more information.

 

Weaving for inclusion

A woman is in a power wheelchair. She is discussing with three other people.Being with, and watching users is the best way to understand how to design software. This is particularly important when focusing on making designs inclusive. A university in Scotland weaves concepts of inclusion and accessible design throughout students’ undergraduate degree gradually introducing them to more complex inclusive design factors. This model could be used in any design discipline. The difficult part is likely to be having teachers who are confident interacting with people with disability and able to support students as they interact with different user groups. The title of the article is “Weaving Accessibility Through an Undergraduate Degree” available from ResearchGate.  

From the conclusion:  “Across all years of our undergraduate programme, we support students to interact with a wide range of users, with a wide range of abilities. Students’ communication with the end users is important, to build confidence on both sides. Students engage with older adults first, as they can typically relate to them more easily and are encouraged to engage in a relaxed environment, e.g. only one note-taker is required. As students progress, they work with users with increasingly complex communication challenges. For students not familiar with disabilities, this can be a difficult experience, and so the communication is supported by teaching and research staff. Students may have personal perceptions of what they expect from this group, but as they build a relationship with the users these initial perceptions are adjusted. This gives our students motivation for the inclusion of accessibility in software development and we aspire for them to champion accessibility within industry and develop inclusive software as a result.”

Abstract: Globally, increasing numbers of people experience accessibility issues related to technology use. At the University of Dundee, we have developed a degree programme that aims to graduate socially-aware computing scientists who can develop for a range of access needs. To achieve this, we engage our students on a supported pathway of exploration, empathy and understanding. Students collaborate with user groups of older adults, adults with aphasia, and users of Alternative and Augmentative Communication (AAC). This practical experience leads to an understanding of the needs of the end-user and the need to develop for ‘people who are not like me’.  

Voices of people with autism in a book

Front cover of the text book.The autism research field has changed a lot in the last 20 years. One of the key findings is the impact the research process has on people with autism. So including the voices of people with autism is really important. With this in mind, a new version of a text book has sections written by autistic contributors from all walks of life. Neurodiversity is a relatively new concept and area of study. There is still much work to do in understanding the diversity of ways autistic people navigate the world around them. 

There is a separate link to the discussion on how the authors went about including people with the lived experience of autism. This link also gives a short chapter by chapter review of the book’s content.

The title of the book is, Autism: A new introduction to psychological theory and current debate. It’s by Sue Fletcher-Watson and Francesca Happe. 

If you want a more personal approach to autism, you can read a transcript of an interview with Louis Scarantino – an autism advocate.  

The Autism Research Council has published its research priorities for 2019.

Highlighting the ‘Dark Side’

young people sit at a table which has a large sheet of paper and writing implements. They appear to be discussing something.Critical Design is a way of challenging stereotypes and prejudice. It is a way of looking at the world from the “dark side” of design thinking. A paper presented at a recent engineering and product design conference explains how design students responded to a series of workshops using the critical design method. The process does not focus on designing solutions. Rather, it focuses on designing to highlight the problem. The idea is to get the participants to think about the problem in greater depth. This is where satire and irony can be used to convey the message of stigma and exclusion. Students were also challenged to consider user empowerment, or how they might reshape societal and cultural stereotypes.

The authors explain, “it is essential that they are armed with design methods for tackling the challenges of stereotypes, prejudice, and discrimination. Furthermore, they must gain valuable experience of interdisciplinary work in order to be prepared for the ‘real’ world, outside of university”.

They conclude the article with, “Whether CD alone can help in battling stereotypes, prejudices, discrimination, and stigma – in so doing achieving a more diverse and inclusive society – we don’t quite know but are sure that it’s a good way to start!

The title of the paper is, Addressing the issue of stigma-free design through critical design workshops.  

Abstract:  Stereotypes and prejudices are a ubiquitous cultural phenomenon that can impinge on peoples’ wellbeing. Moreover, the power of public stigma can make users of certain products experience discrimination, alienation, and inequality. Such experiences increase the likelihood of individuals rejecting products, services, environments, etc. altogether, often depriving them of e.g. safety, efficiency, and independence. In a worst-case scenario this can lead to a stigmatised condition that triggers further inequality and exclusion. In an increasingly complex world, it is imperative that those responsible for addressing future needs, challenges, and demands, i.e. the next generation of designers, architects, engineers, etc., are adequately equipped as regards methods and tools for battling existing stereotypes and prejudices related to social growth and development in society. Through this, they will ensure that stigma-free design is a priority when initiating, planning, and executing future projects. The purpose of this paper is to describe what happens when critical design is used to explore the stigma associated with existing products, services, environments, etc. in the context of interdisciplinary workshops, and to discuss the results so far. Furthermore, the paper examines whether and how this upside-down way of thinking about and performing design is a good contribution to the fields of design, architecture, engineering, etc. as a method of both teaching and learning about equality, diversity, and inclusion.

Learning through experience

A scene of the station showing people near the ticket barrier gates. Claremont College students from different disciplines joined the EnviroLab Asia 2019 Clinic Trip to Japan. A short video shows them checking out accessibility at Umeda train station and Ogimachi Park. The trip included time with Osaka Institute of Technology’s Robotics Department working on a project. They explored robotic technologies and universal design and created a model high tech recreational space for older people. The students conclude that barrier free places are not just for people with disability – it’s about including everyone. 

Abstract:  Studying Accessibility in Japan shows the research project led by Professor Angelina Chin (history, Pomona) with students who studied universal design and accessibility in Japan during the EnviroLab Asia 2019 Clinic Trip. The group also worked with the Osaka Institute of Technology’s Robotics Department.

Editor’s note: This is a video only publication – I couldn’t find any written material other than the abstract. The download button takes you to a high definition of the video, not a document. It is a very large file.

Autism Research Starter Pack

Front cover of the starter pack with cartoon faces.Want to involve autistic people in your research? Well now there is a Starter Pack to help guide you through the participatory process. 

“This Starter Pack is for participatory autism research and is for anyone involved in autism research – in any discipline, in any capacity and in any stage of their lives. It describes how you can begin to genuinely involve autistic people in your research – in such a way that it promotes trusting relationships, is built on mutual respect, and involves listening to, and learning from, one another – that is, being empathetic researchers.” The starter pack is published with Issuu and is a set of slides with key information.

There is also the Participatory Autism Research Collective that is about promoting autistic involvement in autism research. 

A related open access research paper reports on the outcomes from a seminar series, identifying topics relevant to building a community of practice in participatory research. The title of the article is Making the future together: Shaping autism research through meaningful participation.

Another, more dense publication, On the ontological status of autism: the ‘double empathy problemdiscusses the issues as contested social realities.

And a free online course, Understanding Autism  from Future Learn and the University of Kent