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

Innovation, inclusion and leadership

Students and teachers in a lecture room.“Inclusive design can help all human beings experience the world around them in a fair and equal way”. This is the definition on the Global Disability Innovation Hub website. Their blog page is titled,  “Why inclusive design matters and how we are leading change”.  The blog leads up to their new Masters course Disability, Design and Innovation. The course design process included people with disability.

This multidisciplinary course is run in conjunction with the University College London, Loughborough University, University of the Arts and London College of Fashion. International students can also apply. There are bursaries available for UK and EU residents (submission dates closed for this year).  Here is a video with a brief overview.

The Global Disability Innovation Hub has more information on their website on research, education and practice.

The Disability Innovation Summit will be run alongside the Tokyo Paralympic Games. Call for papers will run between October 2019 and March 2020. Priority will be given to submissions with: a passion to collaborate globally; products and ideas that are ready to go to market, or have the ability to be scaled; and tangible solutions that can impact lives around the world.  

Principles for Accessibility Studies

Brightly coloured graphic figures of all sizes and colours merged together.‘Poietic Design’ is about re-imagining everyday designed objects in ways that reconnect us with our everyday experiences. Objects should not just be useful; they should be intrinsically meaningful both philosophically and emotionally. In his paper, Gian Maria Greco discusses the move from particularist approaches based on disability to universalist approaches. This takes it from one person’s problem to a solution for everyone.

Greco follows on from the philosophical work of Rob Imrie and his discussions on the quest for universality. The title of the paper is, Accessibility Studies: Abuses, Misuses and the Method of Poietic DesignGreco concludes the article with a list of principles for design:

    1. The Principal of Universality: accessibility concerns all, not exclusively specific groups or individuals.
    2. The Principle of Personalisation: one size does not fit all. The design should be able to respond to the specificities of individual users.
    3. The Principle of User-centrality: design should focus on users and their specificities.
    4. The Principle of Epistemic Inclusivity: users and other stakeholders, including experts, are bearers of valuable knowledge for the design of artefacts.
    5. The Principle of Participation: design should be carried out through the active participation of the stakeholders involved.
    6. The Principle of Pro-activism: accessibility should be addressed ex-ante, not ex-post.

You will need institutional access for a free read, or try Google Books. 

Abstract: Over the past several decades, accessibility has been increasingly pervading a vast range of fields, producing a large number of new ideas, theories, and innovations that have already proven to be quite fruitful. A closer look at how accessibility has entered and developed in various research fields shows that said fields have experienced fundamental changes: a shift from particularist accounts to a universalist account of access, a shift from maker-centred to user-centred approaches, and a shift from reactive to proactive approaches. Through these processes, accessibility has birthed new areas within those fields, that have been gradually converging to constitute the wider field of accessibility studies. The nature and position of accessibility studies has now become a central topic. This ongoing progression of conceptual clarification may bear some misunderstanding and misinterpretations along the way. In the paper, I first briefly review the principal traits of the process of formation of accessibility studies; then address some possible misconceptions; and finally, introduce a first, very general sketch of poietic design, a method proper to accessibility studies.

UD and the interior design curriculum

A glass walled foyer of an office building with planter boxes and black seating.Inclusion will remain a futuristic concept if we continue to train design professionals without including UD in the curriculum. This was highlighted in a recent survey of interior design students.  It showed the majority had no idea about universal design and of those who did, most only vaguely understood it. Students who had exposure to UD were in favour of having the topic in the curriculum, while others said it would interfere with the technical nature of the course and dilute rigour. They also claimed UD would be an unnecessary addition to an already full course. The results were similar to previous studies showing UD awareness is missing in design studies. 

The first part of the paper covers the background to UD in detail and will be known to many. The second half covers the method, the results and important discussion. This paper comes from the U.A.E. where most of the universities in the region are run by either American, Canadian or British institutions. The title of the paper on ResearchGate is, Concept Awareness of Universal Design in Interior Design Program in the U.A.E.

To disclose or not to disclose

A distance view of Miami University where the study was carried out.How likely are university students to disclose their disability? The answer is related to whether the disability is visible. The concern of being stigmatised is real and is a form of exclusion. Of course, if the disability is visible then stigma is already part of the student’s life. A recent study found students with invisible disability will be less likely to make use of the institution’s accommodations for disability. However, if the teaching staff were helpful and accommodating anyway, the need for seeking institutional support was reduced. An interesting and relatively easy read for a thesis

The title of the thesis is “Effects of Institutional Factors on College Students’ Self- Disclosure of Disability Status and Their Utilization of Disability Services“. Here are two excerpts from the discussion section.

“Students with invisible disabilities in the current study were less likely to use accommodations and self-disclose their disability status to the institution, and students with visible disabilities had used accommodations more often than their peers with invisible disabilities. Research has indicated that students with invisible disabilities perceive revealing one’s disability status as an important decision because it moves the person from a non-stigmatized identity to a stigmatized one.

“This study also found that when professor knowledge and understanding were well-received, students were less likely to self-disclose. This is consistent with research that has indicated students who did not disclose said they felt they didn’t need accommodations because their professors were helpful and accepting of their disability without needing institutional documentation (Cole & Cawthon, 2015). When students do not feel supported by professors, they are more likely to advocate for their rights and self-disclose to the institution, which occurs more regularly for students with invisible disabilities (Marshak et al., 2010).

 

Advances in Design for Inclusion

Front cover of the publication.A new book covers several topics in design: universal design; design for all; digital inclusion; universal usability; and accessibility of technologies regardless of users’ age, financial situation, education, geographic location, culture and language. It especially focuses on accessibility for people with auditory, cognitive, neurological, and visual impairments, ageing populations, and mobility for those with special physical needs.

The title of the book is Advances in Design for Inclusion. It is an academic text, published by Springer, from the proceedings of the International Conference on Design for Inclusion held in Washington DC in July 2019. The chapters are diverse and specific. For example, yacht design;  automated vending machines; prisons; parking meters; garden objects; housing; city maps, built environment and much more. Chapters can be purchased separately if you don’t have institutional access.  

Design-for-All: Transferring knowledge

Graphic of four criteria based on How, What, Why, Where.Design-for-All / Universal Design studies are often discussed from a theoretic point of view or from a user participation standpoint. Few studies look at the practical tools architects could use to help them apply the principles of inclusive design. 

A literature review from Europe sought to identify how to transfer design information to architects so that they could do more than just comply with access standards. Four criteria for translating user needs into design strategies were found. These will be developed into a tool in the next stage of the research.  See the full paper for the criteria which are also neatly shown in a graphic above.

The title of the paper is, Inspiring architects in the application of Design-for-All: Knowledge transfer methods and tools. The research team is E. Mosca, J. Herssens, A. Rebecchi and S. Capolongo.  
Note that Design-for-All (DfA) is mostly used in Europe, Inclusive Design in UK, and Universal Design elsewhere. As they are all based around the same ideas, the terms are used interchangeably. The term universal design is in the UN Convention for the Rights of Persons with Disability. This Convention came into being after the other terms were well established.