Prof’s privacy appeal denied by Euro court

The European Court of Human Rights has upheld a Swedish court decision to fine a former Swedish university department head for barring access to and later destroying research material.

Prof's privacy appeal denied by Euro court
Christopher Gillberg and wife Carina at Gothenburg district court, February 2002

However, it has left the door open to the possibility of Professor Christopher Gillberg requesting a new trial in a new chamber with 17 judges.

Gillberg was initially handed a suspended sentenced and fined 37,500 kronor ($5,650) in 2005 for “misuse of office” from a series of incidents from 2002 to 2004.

After the judgment was upheld by a court of appeal and leave to appeal to the Supreme Court was refused on April 25th, 2006, Gillberg turned to the European Court of Human Rights.

“It means in theory that Gillberg has an opportunity to go to court and say that, ‘This is fundamentally important and the majority have come to the conclusion that it is totally wrong, so I want a new trial by the court in full meeting,'” Sweden’s Elisabet Fura, one of the seven judges who considered Gill’s notification, told news agency TT.

Gillberg is a well known professor and the former head of the department of child and adolescent psychiatry at the University of Gothenburg. In his role, he carried out research on hyperactivity and attention-deficit disorders.

According to the case, in 2002, a paediatrician, “K,” and a sociologist, “E,” who were critical of Gillberg’s research requested access to the background material, which occupied 22 metres of shelf space. Their request was refused several times by the school on the grounds of secrecy.

From 1977 to 1992, Gillberg conducted research on children with attention deficit hyperactivity disorder (ADHD) and deficits in attention, motor control and perception (DAMP). Gillberg had promised the patients and their parents absolute confidentiality.

In April 2003, the school initially limited the use and transmission of the material. These restrictions were lifted by the Administrative Court of Appeal four months later and leave to appeal to the Supreme Administrative Court was denied.

Subsequently, Gillberg asked the relevant patients and their parents if they would be prepared to have the data released and all but one family refused.

The university dean requested Gillberg transport the material to another specified university facility in August 2003, where it was agreed that K and E could have access. Gillberg refused and the meeting was cancelled.

The dean informed K and E that he could not help them any further in September 2003, but would bring Gillberg before the Public Disciplinary Board (Statens ansvarsnämnd) on the grounds of disobedience.

The university board discussed the refusal to surrender the research material and subsequently decided to refuse access to K and give restricted access to E. The Administrative Court of Appeal nullified these decisions on May 4th, 2004.

Five days later, the research material was destroyed, apparently by three of Gillberg’s employees.

In addition to Gillberg, Gothenburg district court fined the dean 32,000 kronor on June 27th, 2005.

The European court’s seven judges found that only two of the European Convention on Human Rights’ articles provided a basis for taking up the case. The court disagreed regarding the assessment of Article 8, under which two of thejudges determined that Sweden had violated the right to freedom of expression.

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‘Everyone in my life has noticed’: How Denmark’s Covid-19 lockdown helped people with ADHD

A Danish researcher found that some people with ADHD responded positively to disruption to their daily lives caused by the Covid-19 pandemic and resultant lockdown in the country in Spring 2020. In some cases, they had coping tools that others lacked. Her findings could prove beneficial for post-pandemic working environments.

'Everyone in my life has noticed': How Denmark's Covid-19 lockdown helped people with ADHD
A deserted commuter train in Denmark in March 2020. Photo: Liselotte Sabroe/Ritzau Scanpix

For Zachary Helms, a 31 year-old American man who lives in Copenhagen, living with ADHD has meant structure and scheduling has always been difficult. Adults living with Attention Deficit and Hyperactivity Disorder often struggle to develop an innate awareness of time and an ability to track its passing.

As such individuals with ADHD often live with a phenomenon known as time-blindness, that makes sticking to a schedule and being on time particularly difficult. 

The Covid-19 pandemic brought new attention to the phenomenon of time-blindness when adults without ADHD started experiencing its symptoms. An article in New York Magazine by Bridget Read in April of 2020 titled “What is ‘Time Blindness’ and Do You Have It?” highlighted the ways that the changes in structure of time and routine during lockdown led neurotypical individuals to start experiencing time-blindness. 

“Without the usual time-marker cues we might use to divide up our days — the school bus arriving, standing on a crowded train platform, the line at the coffee shop, weekend nights spent at restaurants with friends — we’re swimming in a sea of sameness,” wrote Read. People featured in the article felt days blending into each other and began to struggle to stick to a schedule or be on time for meetings. 

It would be a reasonable assumption to think that the increasing experience of time-blindness for neurotypical adults during the pandemic would mean that individuals with ADHD who normally experience the phenomenon would have worsened symptoms. 

But new research by Danish researcher Gitte Vandborg Rasmussen of Aarhus University’s HOPE Project suggests the opposite.

In fact her conversations with 21 adults living with ADHD during the first lockdown in Denmark last year indicated that the changes in time structure during the pandemic not only relieved some adults living with ADHD of some of their symptoms, but that many of them had tools to cope with the new structure of daily life that neurotypical adults lacked. 

Rasmussen conducted qualitative anthropological research for the HOPE Project last spring through a series of interviews with adults who had been diagnosed with ADHD. The HOPE Project, based out of the Department of Political Science, is an interdisciplinary research project examining the interrelationship between the trajectory of the COVID-19 pandemic, the decisions of governments and international organizations, the decisions of media and social media landscapes, and citizens’ behaviors and well-being. 

READ ALSO: Danish enthusiasm for Covid-19 jab increases after start of vaccination programme

Rasmussen decided to conduct research on adults living with ADHD during the pandemic as an extension of her existing research focus on the role of time and scheduling in the lived-experience of ADHD. In March of 2021, the project published a work-in-progress report on her findings that several of the included adults with ADHD experienced a relief of symptoms during the first lockdown.

This finding surprised Rasmussen, who expected her subjects to really struggle with the lack of structure created by the pandemic.

“Living with ADHD, you are often challenged around your time. One of the main core treatments or coping strategies for living with ADHD is to make a plan. You have to use your schedule, you have to use your calendar for structuring time every day,” she explained.

With routines and schedules substantially disrupted, she worried her subjects’ ADHD symptoms would worsen.

“I thought, whoa, now everyone’s calendars are empty. Structure is gone. Nothing is the same. I was worried about that. I was concerned about the wellbeing of these individuals. What surprised me was that it didn’t seem to matter that much to the interlocutors. It seemed to me like they were relieved that the calendar was gone” Rasmussen elaborated.

In our interview about his experience with ADHD during the pandemic, Zachary Helms, who works at the Copenhagen-based consulting firm Voluntas, echoed these feelings of relief. He spoke positively about managing his ADHD symptoms during the lockdown and described how working from home gave him the space and time to strengthen coping mechanisms.

“Working virtually has been a huge benefit. It’s forced me to structure my time and take advantage of my calendar. My scheduling has improved, and everyone in my life has noticed,” Helms explained. 

Prior to the pandemic, structuring time was a struggle for Helms. The flexibility of the work day and the remote format made it easier for him to be on time and present during the lockdown.

“The nature of travel means that I always had to plan when I needed to leave, so I was often late. During the lockdown, meetings came straight into my home — it’s hard to be late to a meeting in my living room.”

This experience was common amongst the subjects Rasmussen interviewed for her project. Many of the adults she spoke with felt actually able to be more productive in their work lives without the pressures of having to be physically on time to different meetings and obligations throughout the day. 

“I got stories about the time being less demanding, which connects to the calendar and the schedule. The time allowed for things to be done when they fit. It’s not that the subjects didn’t want to do their routines. They went to work, brushed their teeth, and got their grocery shopping done. There was just a relief of not having to be timely, precisely, not having to schedule everything,” Rasmussen said. 

The temporal flexibility afforded by lockdown not only helped her subjects stay on top of their tasks and actually stick to their schedule, but the extra time allowed them to explore hobbies and try new things. This was interesting to Rasmussen, who expected that an increase in free time might lead to an increase in restlessness for adults diagnosed with ADHD.

READ ALSO: Expat stories: How I made my closest Danish friend

“I could see that having more time could bring more restlessness, but actually people came on the other side of that. Some of them started reading books and even doing meditation. They were like I’ve never read a book before and now I’ve read seven in the last two weeks,” Rasmussen said.

Zach Helms described something similar in our conversation, noting that he enjoyed the control he had over his time during the lockdown. The ability to choose how he spent his time was actually liberating for someone who struggles with structure. 

“The lockdown has given me opportunities to explore things that I find interesting, and my symptoms make it difficult for me to focus on things that I don’t find interesting. I’ve learned programming, something that was always on my bucket list, and I’ve had ample time to work on myself and develop better habits. For someone who never focuses, habits are essential to keeping up with everything in daily life. I don’t trust my memory, but I trust my habits. Otherwise I’d never find my keys, phone, or wallet,” he explained.

The idea that the less structured workday created by the pandemic might be beneficial for well-being and productivity has been garnering a lot of attention as many countries have been transitioning out of lockdown. But the findings of Danish researcher Gitte Rasmussen and the experience of individuals like Zachary Helms suggest that re-structuring the workday to allow employees more agency over how, when and where they conduct their work can have profound implications on the severity of ADHD symptoms.

One of the things Rasmussen considered after reflecting on the conversations with her subjects was that in times of collective crisis, it could be important to look to those with disabilities and different learning styles. People with disorders like ADHD or who struggle with mental health under “normal” circumstances might have some coping mechanisms that would be useful to the more general population when those “normal” circumstances are dramatically altered. 

Living with and managing ADHD often means you have practiced coping strategies in order to navigate insecurity and anxiety, according to Rasmussen. This is one of the reasons that Rasmussen thought that her subjects with ADHD handled Covid-19 better than she would have anticipated. 

“I think this showed that who we thought would be vulnerable, actually seemed to be the ones with some extra resources.” Rasmussen said.

“The pandemic really made people reflect on their own life, but also on politics and how we create our world and how we structure our world, which was really inspiring.”

Rasmussen’s research suggests that as we adjust back to normality it might be worthwhile to bring some of the flexibility of the pandemic work environment. Doing so might make work more accommodating and accessible for people with different ways of learning and thinking – like those living with ADHD. On the other hand, in times of crisis we might choose to look to non-neurotypical individuals for thinking creatively and adapting to new ways of life. 

READ ALSO: ANALYSIS: Why are Denmark’s politicians criticising university researchers?