Digital divide in autism technologies

New research by Professor Petrus de Vries, Aubrey Kumm and Marisa Viljoen of the Centre for Autism Research in Africa (CARA) explores a phenomenon that was already well established before the global pandemic struck: the adoption of digital technologies to help empower, diagnose, educate and provide clinical care for those living with autism spectrum disorder (ASD). In particular the research examines six emerging technologies and the widening digital divide between those with access to them in contrast to the 95% of people with ASD who live in low- and middle-income countries.

Petrus de Vries is Professor of Child and Adolescent Psychiatry and founding director of CARA. He explains that people living with ASD (including autistic individuals, those who care for them and those who provide them with healthcare and educational services) can utilise technology to aid screening, diagnosis, rehabilitation, training and education.

“Video telecommunication technology for example, can transport specialists from hundreds or thousands of miles away into a local community centre to provide skills training to parents, carers, teachers and healthcare workers who may never have had access to these experts otherwise.”

Other examples include text messaging apps like Whatsapp that can provide a voice for those who are unable to speak, as well as provide instantaneous support for parents and carers in the form of online chat groups.

Marisa Viljoen, a research project coordinator at CARA and co-author of the recent paper published in Journal of Autism and Developmental Disorders, explains how other emerging technologies can use digital biomarkers for screening and assessment of children with ASD.

“Scientists are developing mobile apps that can track whether a child spends more time looking at non-social things, like toys, compared to social things such as people’s faces. Caregivers can download an app, do a simple task with their child and identify if their child is high risk for ASD. This is a new technology, but I think it holds a ton of potential.”

The switch to online meant that wealthier families could adapt easily; but poorer families with very limited data, usually on a smartphone, were left further behind than they were before the pandemic.

While this provides exciting opportunities for new diagnostic tools and clinical treatment, the majority of people living with ASD in low- and middle-income settings are often unable to access such technologies due to cost, low connectivity, unreliable electricity and a lack of access to devices.

How COVID-19 widened the digital divide

According to Aubrey Kumm, a member of CARA with a background in neuroscience, the move towards telemedicine and online education accelerated due to COVID-19 restrictions.

“Access to the world wide web, be it from desktop, laptop, tablet or phone, has made it possible for parents and children to access education, training and therapy from their living rooms and on demand.”

De Vries agrees but points out that this can lead to a widening digital divide: “During the pandemic everyone around the world said ‘let’s switch to technology’ for clinical work, teaching and research. Some clinical centres in rich countries now do 100% of their clinical assessments for ASD online. And many researchers have simply transferred their research to be online.

“On the one hand that’s great because it meant clinical work, teaching and research could continue. But, as we pointed out in the JADD article, this switch meant that wealthier families who already had high-speed internet and lots of data could do this switch easily; but poorer families with very limited data, usually on a smartphone were left further behind than they were before the pandemic.”

According to de Vries, technologies are likely to play a very significant role in provision of healthcare in the coming decades.

“Digital disparities will lead to healthcare (and educational and economic) disparities in the future unless we make very specific efforts to reduce the digital divide.”

Is mHealth the answer?

In order to evaluate the feasibility of emerging technologies in LMIC settings, de Vries explains that all three researchers independently rated six technologies that the ASD community is currently testing: personal computers, robotics, virtual reality, shared active surfaces, sensing technologies, and mobile devices.

“We evaluated each one according to how feasible it would be to use such a technology in poor countries. Our findings showed that mobile Health (mHealth)/smartphone-based technologies had the best chance to be implemented in poor countries. However, we also pointed out that almost no mHeath solutions for ASD had ever been studied in poor countries.”

Kumm points out that the paucity of ASD-related research in general, and technology for ASD in particular,  gives rise to a significant research gap between rich and poor countries.

“In our paper we make the point that technologies developed for people living in high-income western countries may not be useful, usable or appropriate for the very culturally and linguistically diverse global autism community. It is important for those researching and developing these assistive technologies to consider not only who and what the technology is for, but also the broader socio-economic,  cultural and language environments of the target end user. If the technology is not affordable, accessible, scalable or acceptable to the user, it will be neither usable nor useful.”

Better research, better tools

According to Viljoen the challenge of creating digital tools that are affordable and useful in low-income settings will require a multi-disciplinary approach.

“We need to approach the challenge of lessening the digital divide from a few different angles if we really want to see a difference. People need affordable internet access. We need technologies that have been developed or adapted for LMICs. We need to think about implementation and scalability. Simply having a technology available does not mean people will use it – we can spend many hours and thousands of rands on developing the perfect technology to only have it sit on the shelf for years.”

Looking to the future, de Vries believes that a positive outcome would be to see that lots of high-quality research had been done to make sure we have mobile health tools that can support all families and all communities across LMICs for screening, diagnosis, training, intervention and support. And that all this is available in ways that are affordable and acceptable to all.

Read the full paper.