Welcome to the information page for the Special Interest Group at IMFAR 2015 on the topic of Technology and Autism.
The 2015 SIG meeting was the third and final on this topic. The SIG Chair was Sue Fletcher-Watson and the organising committee comprises Alyssa Alcorn, Renae Beaumont, Ouriel Grynszpan, Mari Cris MacFarland, Helen Pain and Katharina Spiel.
What’s the Special Interest Group about?
The SIG started out at IMFAR 2013 on the topic of Technology and Autism. It was designed to complement the existing IMFAR Tech Demo session by considering some of the theoretical, methodological and ethical issues around work in this field. In 2014 we returned to continue this process and 2015 was our third and final meeting at IMFAR. Our hope is that the SIGs have resulted in a more strongly connected international community of researchers in autism and technology, and promoted high standards of scientific innovation and methodological rigour in this work.
What happened in 2015 at the SIG meeting?
The SIG took place on Saturday 16th May, during IMFAR and theme of the 2015 SIG was be dissemination.It was attended by about 45 delegates of whom 22 left feedback. Of those, 86% found it Quite or Very Useful, 82% found it Quite or Very Informative and 86% found it Quite or Very Valuable.
We started with a very brief review of activities of the SIG so far, and you can download the slides from that introduction here. As the slides hopefully show, the first ever SIG meeting in 2013 identified a number of key themes, which have been reiterated many times in later discussions. Therefore all the subsequent activities of the SIG have been focused on addressing these themes.
In 2015 main part of the meeting was a chaired expert panel discussion. The multi-disciplinary panel responded to a few questions planned by the committee, followed by open comments from the floor.
The panellists were:
- Shannon Des Roches Rosa, parent of an autistic teen, award-winning blogger at squidalicious.com and senior editor of the Thinking Person’s Guide to Autism. Shannon is an advocate for the benefits of technology, especially iPads, and regularly speaks on the topic, as well as reviewing technologies for consumers.
- Ofer Golan , Bar-Ilan University, creator of two technological interventions: Mindreading and The Transporters, partner in the ASC Inclusion project
- Dan Smith, President of DELSIA, (Delivering Scientific Innovation for Autism), an affiliate of Autism Speaks dedicated to funding technological innovation projects, and vice-president of Innovative Technologies at Autism Speaks.
- Oliver Wendt, Purdue University, expert in the field of augmentative and alternative communication (AAC) and co-founder of an AAC software company SPEAK MODalities LLC, which recently won the Best in Education Tech award at the MIRA awards in Indiana.
The panel was chaired by Sue Fletcher-Watson, University of Edinburgh, Chair of the ASDTech SIG at IMFAR 2013-15, creator of a best-selling iPad app for young children with autism, FindMe, and expert reviewer of autism technologies.
Before the SIG we sketched out the following list of discussion topics:
- how and what to disseminate between researchers to permit replication and develop evidence of effectiveness
- international dissemination issues: language, culturally appropriate content, available global dissemination routes
- open source dissemination: why, when and how? What about long-term consumer support and technology updates?
- keeping researcher-developed and/or evidence based technologies up to date with latest commercial developments
- other challenges to, and guidelines for, successful tech dissemination
The debate was wide-ranging and effective. In response to questions from the Chair and the floor, the panellists and audience identified the following key issues:
- Filtering: There is much too much tech out there and it is hard to find reliable, effective filters to identify what’s good quality.
- Snake oil: The probem of filtering is exacerbated by the fact that there are many poor quality technologies which aim to exploit the needs and vulnerabilities of the autism community without delivering real benefit
- False advertising: App developers may be offered the opportunity to be reviewed or to collect markers such as ‘Mom approved!” but these often come with a charge, and are therefore not independent, objective evaluations. In fact, it is not clear whether these so-called quality markers involve any genuine review process at all.
- Marketing: Researchers who work in this field value research evidence but this doesn’t necessarily translate into better sales, marketplace penetration or commercial support.
- Commercial pressures: the panel recommended partnership with business mentors, but recognised that their advice (e.g. never share a free version of your product) might conflict with the researcher / practitioner’s desire to provide real, accessible support to the community.
- Intellectual property: when putting together a new technology it is essential to think from the start about protecting your IP rights and registering a patent.
- Evidence: It remains unclear what consitutes evidence in the context of technological supports. While randomised controlled trials remain the gold standard it is not generally reasonable or practical to expect this level of evidence, especially from a commercially-developed app. Lack of RCT evidence doesn’t necessarily mean the app can’t deliver any benefit.
- Design: An overlooked aspect of technologies for autistic users is the design quality. A game intended to provide a learning or therapeutic support also needs to meet a high standard in design to be effective.
- Humanity: the world of technology support, like the world of autism intervention more generally, needs to remember that the autistic person requires support to be themselves, not to become someone else. Another overlooked aspect of the tech quality judgement process is what the technology is aiming to do. Technologies are rarely developed in partnership with autistic people and in direct response to their needs.
What can we do about these issues?
Consumer needs: It is clear from the summary above that one important service for the SIG members is to try to share recommendations about quality technologies which either have good research evidence or have been personally tried and tested by someone with relevant expertise. To this end we will be circulating a greatest hits Digest to the mailing list which will briefly review all recommended resources for filtering technologies by quality. In addition we will be using the ASDTech mailing list to explore ways to create better ways to filter available technologies, for parents and practitioners.
Developer needs: our autism and technology map of expertise will be going live on this website shortly. This provides a way to locate people working in the field, from all sectors – commercial tech developers, researchers, and practitioners. We hope the map will provide a way for people facing hcallenges in their tech development work to find mentors, and get specific questions answered. The Quick Questions section of the ASDTech digest is another way to source this kind of support.
Researcher needs: It is clear that a major challenge for researchers is how to gather the right level of evidence for their technology which is both rigorous and scientific but also affordable and produces timely results. Members of the SIG have already put together a proposal for funding to develop a technology-specific evidence-based framework for evaluating technologies, including internal features (e.g. design, build) and external effectiveness and efficacy.
As this was the closing meeting of the SIG we also invited specific suggestions from those attending about how to build on the work of the SIG, drawing on existing tools such as the mailing list and international expertise map and identifying further opportunities for meetings. The SIG mailing list in particular means that the community of those with a special interest in autism and technology can continue to work together even in the absence of opportunities to meet at IMFAR conferences.
- Investment by all SIG members in existing quality resources for reviewing and recommending technologies for autism. Examples include the Autism Speaks app list; reviews on the Thinking Person’s Guide to Autism website, and app reviews on the DART site.
- Development of potential new routes to technology filering, such as requesting an Autism section on new website Psyberguide or developing technology review activities for undergraduate students (e.g. students learn about autism and technology through a review activity, and the finished review is then published online)
- Offering topical webinars and online live chats as a way to share training and continue discussions
- Creation of an (open access) journal on autism and technology and / or developing published conference proceedings from the IMFAR Tech Demo session
- Having a presence at the biennial ITASD conferences
What happened in 2014 at the SIG?
The SIG in 2014 was attended by 51 delegates from a wide variety of nationalities and professional backgrounds. It opened with a short review reporting on aforementioned novel data, and signposting resources for finding out more about specific technology types and usage. You can download the pdf of that presentation here and this page has a list of useful online resources for autism & technology.
Thereafter the SIG was divided into small, interdisciplinary groups to consider research questions identified in advance, building on the outcome of the 2013 meeting. Each group was asked to construct, in note form, a project to address their given research question. The goal was to inspire further collaborative research incorporating interdisciplinary perspectives and excellence in methodology. You can download the completed proposals here – please note that these were constructed by sometimes quite large groups at 7.30am so they’re not polished or complete..:
- Developing a framework to reconcile a time-consuming rigorous evaluation process with the fast-paced development of technological intervention
- Is the value of technology enhanced by combination with interpersonal interventions or other traditional methods?
- Creating tools to guide families, teachers or practitioners on how to use technology with users with autism.
- What are the most appropriate instruments and meaningful variables for measuring the outcomes of technology based interventions? Group 1 proposal and Group 2 proposal
- Maximising the impact of continuous data collection during technology-based intervention, education or recreation studies.
- How can we evaluate the benefits and costs of technology use in order to define best practice at home, in the classroom or in clinical use?
- Developing or using technology to support people with autism in rural communities.
- Can technology be used to support people with ASD as they grow old?
- Using technology to support the needs of teenagers and adults with ASD.
- Is it necessary to design technologies for users with ASD with specific autism-friendly features?
In the last segment we reviewed the mentoring process, canvassing for suggestions on effective support for early-career researchers in the coming year. After the SIG, attendees completed a short questionnaire to collect feedback, and also to collect information on their current projects, research methodology, the type of data used for evaluation and the type of technology they develop. This is currently being developed into a global, interactive digital map of autism and technology expertise. However in the meantime, we can share that of 31 participants who left feedback 77% found it Quite or Very Useful, 87% found it Quite or Very Informative and 97% found it Quite or Very Valuable.
What happened in 2013?
The Autism & Technology SIG in 2013 took place , as part of the International Meeting for Autism Research, in San Sebastian, Spain. The main issues raised at the 2013 SIG were:
- the difficulty of appraising the volume and variety of technologies available for people with autism;
- the lack of guidance for families and practitioners on how to use it;
- the need for stronger research methodologies;
- the need to share both data and technologies between researchers.
In response to these, the Chair instigated an Autism & Technology Digest – a monthly email circulated to a list of over 130 international subscribers from clinical, educational, commercial and academic backgrounds. This summarises news, research findings, online resources and examples of best practice in autism and technology worldwide. The committee also published an online SIG report (with early-career co-authors) and has completed a new research project using a survey (in Spanish and English) and interviews to explore families’ use of technology at home.
How can I get involved?
- if you want to sign up to receive the monthly ASDtech digest – an email round up of news and developments in this field – then please get in touch.
- download a copy of the SIG 2013 report and a copy of the original SIG handout from 2013 which includes the topics discussed
- find out about a previous event on autism software held in 2012 at the University of Edinburgh
- Have a look at the work of some of the SIG organisers at the LaerLab website