OHSU evaluation tool aims to diagnose extreme social isolation

Hikikomori is an extreme form of social isolation first recognized in Japan in the 1990s. It’s distinct from similar conditions like anxiety or agoraphobia and is characterized by sustained physical isolation, often at home. The condition is still gaining traction in mental health spaces, but a research team led by Oregon Health & Science University has developed a new evaluation tool to help providers diagnose hikikomori.

Alan Teo, associate professor of psychiatry at OHSU, joins us with more details on the first-of-its-kind tool, and how the pandemic exacerbated conditions related to social isolation.

The following transcript was created by a computer and edited by a volunteer:

Dave Miller: This is Think Out Loud on OPB. I’m Dave Miller. Three and a half years ago, we talked to a psychiatrist at the Portland VA and Oregon Health and Science University. He was working to spread awareness of something known as Hikikomori. That is an extreme form of social isolation, first recognized in Japan in the 1990s. We talked just a few months before the COVID-19 pandemic shut down nearly all of public life all over the world. Now, that researcher, Alan Teo, has developed a new evaluation tool to help providers diagnose Hikikomori. He joins us once again. Alan Teo, it’s good to have you back.

Alan Teo: Likewise. Nice to join you.

Miller: Can you remind us what Hikikomori is?

Teo: Yeah. Hikikomori is a form of social isolation or severe social withdrawal, and the core defining feature of it is physically isolating yourself in your home. It’s not doing that just for, as you alluded to, COVID. We remember lockdown, but this is a sort of extended period, and six months is the threshold that we use to define this sustained isolation in one’s home.

Miller: How is this different from agoraphobia, or extreme anxiety?

Teo: It’s absolutely true that a number of psychiatric disorders have isolation as one of the symptoms, but the difference is really that the isolation in one’s home, the emotional distress from that isolation, is really the defining core feature. In other words, other conditions we see, my patients with depression or my patients with post-traumatic stress disorder, they have isolation as a feature, but it’s usually a side feature to the condition, not the central piece to it.

Miller: This condition, as I noted, was first recognized in Japan in young people. Is there an age component to this that researchers have identified more recently?

Teo: Yeah, there is absolutely an age component in the sense that we usually see it first detected, or the onset of the condition is often in adolescence or young adulthood. Some of that really may have to do with our social development as humans. Social lives are important at all phases of our life, but it’s really particularly challenging, for folks that are in that adolescent and young adult period.

Miller: We talked right after you’d published a new simplified definition of Hikikomori a few years ago. Have you seen more providers, or patients, recognizing this condition in the years that have followed?

Teo: Yeah, absolutely. There’s, I think, more awareness and identification of this condition. One example, I helped write and publish a screening tool, a scale that can be taken by you or me or anyone - I’ve put that publicly available on my website - and we saw a big trend in more downloads and use of that.

I’m really heartened by this other thing, which is I’m getting more and more contacted by psychologists, clinicians, other people really from all over the world. These are individuals that are trying to understand Hikikomori or Hikikomori-like conditions in their own community, from not just Tokyo but all the way across to Turkey. We’re seeing it all over the globe. I’m heartened that people are looking into this in their own communities.

Miller: Anecdotally, it was super clear that the pandemic was a period of extreme and ongoing social isolation for people all over the world, but in a lot of ways, we were talking about physical isolation. What’s the important distinction here, when it comes to Hikikomori?

Teo: When we think about conditions that have a mental health component, I often think about the behavioral component to it as well as the emotional and psychological component. Hikikomori does have both of those features. The withdrawal into one’s home, that is literally the behavior. Some might call it a defense mechanism, withdrawing into one’s home, but there’s clearly, surely, a lot of emotional problems that are tied in with it. I have to also add in the social components, too. For example, we often see that this may begin with a lot of difficulty in school, dropping out of school, having challenges in a person’s social environment, and then that behavior of withdrawing occurs. The emotional distress, the mood problems, are all layered on top of it.

Miller: Let’s turn to the recent announcement, the diagnostic tool that was recently published. What is it?

Teo: This is quite simply a sort of structured interview form. It’s designed to help professionals, clinicians, other people that are in health care, evaluate and assess their patients, so if they’re thinking that there’s suspicion or concern that a patient might have Hikikomori, this is meant to be a tool to help them. It’s meant to be something that can be used consistently across different settings. As we were talking about earlier, Dave, people are studying this now all over the globe, so one thing that I think is important is to make sure we’re talking about apples to apples. You have an interview form, interview questions, that allow the same type of queries, whether you’re a psychologist in Russia or a psychologist here in Oregon. That consistency is really, really important and helpful.

Miller: What are some of those questions?

Teo: One thing we ask about is just the frequency of going out. How often do you go outside? How often in a week would you go outside, and for how long? Because we’ve seen again, in some of the origins of this research in Japan, that some individuals would count going out to the mailbox as getting out of the house. As we’ve learned more about this condition, we’ve determined we need to ask about it again, we need to really dig deep and find out how often people are going out, in what ways, in addition to how chronic and how consistent. Does this ebb and flow, or is it a persistent problem? These are all the types of questions that we include in this sort of rating process.

Miller: How different are some of these questions from what clinicians might already ask if they were trying to get at something like depression?

Teo: If we’re talking about something like depression, it is different because, quite frankly, the clinical diagnoses like major depression are really based on different criteria. For example, if we’re talking about depression, I’d be talking to my patients, asking them about how low their mood is, whether they’re having trouble enjoying themselves. These things can relate, but they’re definitely different questions than we’re asking.

Miller: Because the heart of the behavior here that you want to zero in on is not leaving your home.

Teo: Correct.

Miller: And then the extent to which that is leading to major problems in your life?

Teo: Exactly, and so we want to detect it. I would say that again, this is not a tool to be used unto itself or alone. In other words, after establishing someone has Hikikomori, we also want to do a full psychological assessment. For example, if there is depression that’s co-occurring, that’s super helpful information to guide treatment. The reality is, in psychiatry, we have lots of interview tools, but social withdrawal has really been given scant consideration. People are aware of it, but there haven’t been structured tools to look at it. So to me, it seemed like a no-brainer to develop something like this.

Miller: You’ve pointed out that, until there was an agreed upon diagnosis - for your example, different clinicians in different countries asking the same kinds of questions - and until you had an established evaluation tool, you couldn’t move on to exploring treatment in a rigorous way, in an apples to apples way. But now, here you are. So what are your strategies for studying treatment?

Teo: This is a brick by brick process, Dave. For studying treatment, there just haven’t been studies. There have only been one or two on treatment, so the process for studying treatment is, can we assemble, in a research study, patients that meet a consistent definition? Can they undergo a professional diagnosis? And then, can we compare how people do to receiving one treatment, versus not receiving it? Receiving a placebo, or an alternative treatment. But until you know that you have people that meet the definition, until you can really follow them and see how they do over time with treatment, we just don’t know what works [and] what doesn’t work.

Miller: It seems like one of the challenges that you and others could run into is just the hidden aspect of this. If, by definition, the people that you want to help are self-isolating, they’re at home. How are you going to find them to help them?

Teo: Typically the first point of outreach is a family member. We do know, in mental health, it can be incredibly helpful to educate, and do more than educate but really empower, family members. How I communicate with my daughter or my wife in my home, these things have a direct impact on our mental health, so engaging loved ones, family members, helping them learn how to connect and help their family member who might be suffering from this, these are helpful tools to indirectly support the treatment.

Miller: What options are there? We’re talking about future work, to have rigorous research into treatment, but we also talked about the fact that this was first identified in Japan, more than three decades ago. Are there any treatment options that seem to have worked already?

Teo: Yes. I can’t give a two thumbs up to any. I can say that, again, things that have been used in routine practice in Japan, include things like support centers where, again, affected individuals or family members can come in for consultation. It includes what we call vocational rehabilitation; that’s providing training in work skills that would allow them to engage in their community, other things like even home visitation programs. There was just a piece published by a journalist in Canada that I interacted with, who was studying this sort of home visitation approach.

There are a lot of approaches out there, and the last thing I’ll say is, I think we can learn from community members. We can learn from what practitioners and providers are doing. That’s one of my interests going forward, is developing a community of practice where we look at what are people testing on the ground? What are they learning? We need research studies, sort of the rigorous research studies that I try and work on, but we also need this sort of community of practitioners sharing in their experience.

Miller: We’ve been talking about an extreme form of social isolation, but one of the themes that’s just come up here and there in a number of conversations we’ve had on this show just in recent weeks, is a kind of lower level of isolation that might, that probably would not rise to the level of what you’re talking about clinically, but still could be damaging to individuals and to society. I’m just wondering how much you think about those lower levels, but still serious versions, of a maybe increasingly isolated public?

Teo: I think about it all the time, Dave. Hikikomori is one piece that I study, but I’m very devoted to trying to work on things like loneliness, which may be lower grade, but it deteriorates our health. There is abundant data on the fact that that feeling of isolation, that loneliness at a lower grade, it really eats at us. It’s a social pain, and so we do know that that has health effects, and many of us are trying to address making people more socially connected, and understanding that more social connection is good for our health. It’s good for our happiness, but it’s also good for our health.

Miller: Alan Teo, thanks for your time again. I appreciate it.

Teo: Thank you.

Miller: Alan Teo is an associate professor of psychiatry at Oregon Health and Science University.

Contact “Think Out Loud®”

If you’d like to comment on any of the topics in this show or suggest a topic of your own, please get in touch with us on Facebook, send an email to thinkoutloud@opb.org, or you can leave a voicemail for us at 503-293-1983. The call-in phone number during the noon hour is 888-665-5865.