Is Technology Hurting the Neurodiverse?

Source: Courtesy of: Forum at the Massachusetts Institute of Technology

The following is an edited interview with communications and disability expert Meryl Alper. She is the author of the books Digital Youth with Disabilities (MIT Press, 2014), Giving Voice: Mobile Communication, Disability, and Inequality (MIT Press, 2017), and Kids Across the Spectrums: Growing Up Autistic in the Digital Age (MIT Press, 2023). I wanted to know her thoughts about my son's apparent digital addiction.

Erik Raschke: We just got my son a VR headset and I was looking for something that would help him with social skills or learn how to help him practice skills in everyday life. The apps that label themselves as “for people with autism” are not really interesting for my son and they are often glitchy as well as expensive.

Meryl Alper: You're absolutely right. The quality is not there. Those apps are often not updated or glitchy, and the claims that they have around being actually helpful aren't really backed by research. Some of the most useful technologies are unfortunately just prototypes. There are a couple of great studies on collaborative games for school-age autistic kids, and games for autistic and non autistic kids. (See here and here).

When you create a piece of software, you have to ask yourself, is it part of some broader program, is it something that you know that there's additional supplemental materials that go along with it? A standalone app on its own can be really hard for kids to get the maximum benefit.

ER: My son spends hours listening to music and then going through the samples. He uses his camera to identify things, GPT to ask questions, etc. However, the minute I take his phone away, he becomes very, very angry, like an addict might. So, where do you where do you see technology working and not working for people who are disabled?

MA: In some ways, TikTok is connecting young disabled people to other young disabled people in ways that were unimaginable. Before, you had to go out and physically find a certain community. Now, you can connect easily. At the same time, if you’re young and disabled, you don't cognitively understand privacy controls, or how to block people or other people’s posts. In that case, TikTok is the worst thing ever. TikTok can be for some people one of the best things ever and for others the worst possible thing imaginable.

A big missing part of a lot of conversations around technology has to do with the sensory aspect—the way they physically feel, the visual stimulation, the auditory components. Media can serve as a way to block out unwanted stimuli or let certain stimuli in. Does your son hold the screen up close? Does he prefe that full wraparound experience? The additional stimuli can help him feel more regulated.

I am doing some research right now actually looking at XR [extended reality] and neurodivergent populations. What I'm really interested in is what the researchers are doing and the ethical implications of their choices. What are the medical or therapeutic benefits? What kinds of data needs to be collected from from young people to make that happen? And what are the ethics of the collection of that data? Could it be misused in particular kinds of ways? Neurodivergent kids need settings that might require additional protection. So I’m trying to map out and talk to different stakeholder groups like parents, teachers, and therapists, and then also people who are neurodivergent. I want to get a sense of what is fair or not fair use, and what kind of language is appropriate. People who are designing these technologies need to reflect on the worst-case, not just the best-case scenarios.

ER: What's an example of something that you have come across that you thought was really interesting?

MA: There are a lot of autistic kids making cool stuff, for one another, on Scratch. They do it in a moderated way, with social functions built in, but in ways that might be more gentle or less aggressive and less commercial, and less data-intrusive. So that's something that I talked about in my book. That's something that I saw in my research as a sort of alternative, like as a non-commercial space for that kind of exploration and that messy expression.

There are some technologies that exist in these very, very rudimentary ways, but are immersive like existing in a physical space. It’s not just a headset, but something that physically wraps around you, something you can use to practice different kinds of social situations like paying at the cash register. If you’re ever going to be independent, you need to go out in the world, and not everybody has the ability or the access to do that right away.

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There's also certain media coming out, mostly from public broadcasters for kids, that model the variety of social intelligences that exist out there. Not just social skills, but also neurodivergent people's way of communicating and expressing themselves. So it's kind of a two-way street. Media can make an impact not just on neurodivergent kids or their families but also the neurotypical population as well.

I think that the most impactful stuff will be stuff that is thinking about all sides, all parts of conversation and communication and relationships, and that considers that there are multiple parties involved.

ER: What are the top three most important things for parents of neurodivergent teens to know in relation to technology?

MA: One, sleep is most important. Sleep impacts everything from metabolism to concentration. Is technology making sleep harder?

Two, really know how technology is affecting your child’s behavior. It can be hard to be a detective around why your child behaves the way they do and we are quick to blame something they saw or read in social media, but maybe there is something more beyond technology. It might not have anything to do with technology at all.

Three, emotional well-being. If you took technology away from your child, would you be taking a very important tool away from them in terms of how they express themselves? It can be a double-edged sword because while they might be expressing themselves they also might be interacting in negative ways.