In 2022, the National Board of Health and Welfare estimated that 5-7% of children in Sweden had a formal ADHD diagnosis, and 1-2% of the adult population had an autism diagnosis. The number of undiagnosed cases is likely to be significant.
“We can assume that autism and ADHD are quite common among researchers and teachers, but most people mask it,” says Hanna Bertilsdotter Rosqvist, a professor of social work at Södertörn University and a researcher on autism and ADHD.
“This is a problem,” she continues. “If it’s common, maybe that means that academia is quite inclusive. We have always been here and will always be here. But if no-one ’comes out’, people might think that’s not the case.”
Hanna Bertilsdotter Rosqvist
Professor of social work at Södertörn University Kristina Sahlén
Bertilsdotter Rosqvist explains that all brains work slightly differently. That is why she uses the term neurodiversity – recognising that there is a natural diversity of brains with different strengths, challenges and needs.
ADHD and autism are neuropsychiatric diagnoses that are based on the extent to which a person displays a range of symptoms that have made it difficult for them to function in everyday life. Categorising symptoms can be helpful for a person’s self-understanding. But such categorisation is also limiting, she believes, because it focuses on deficiencies, and functional variation is considerable, even within groups.
“The diagnosis provides a very basic self-knowledge, but then an enormous amount of self-exploration is required for individuals to understand things like ‘Why don’t I get this?’ and ‘Why does this make me so tired?’”
Most people do not know much about these diagnoses, so they can often have false and negative expectations.
“If I say I’m autistic, I might get a reaction like ‘Well, you can look me in the eye.’ Or my colleagues may think it means that I can’t do this or that. It is very challenging to have to explain yourself in contexts where people actually don’t understand, and don’t understand that they don’t understand. This causes many people to choose to mask their autism or ADHD.”
However, to illustrate the difference between how an ADHD brain, an autistic brain and a neurotypical brain might work, she tells a story of three people standing on the bank of a river they need to cross. The autistic person solves the problem by sorting grains of sand until they find a pattern and use it to build a new kind of bridge. The person with ADHD takes a bird’s eye view and uses the resources at hand to create a new way to solve the situation. The neurotypical person reuses old ideas to build a bridge.
All these approaches can come into their own in academia, where successful research requires you to be systematic, rigorous, analytical and innovative.
For collaboration between colleagues to work, it is important that those involved have an awareness of how they themselves function and what their needs are, regardless of whether they have a diagnosis or not, says Bertilsdotter Rosqvist.
“Sometimes when I work with a colleague who first needs questions to be able to work further with data, friction can arise, because I have to work from the bottom up and sort all the data before I can see the pattern and thus formulate questions. We might therefore approach the process differently.”
Hanna Bertilsdotter Rosqvist realised she had autism when she was conducting ethnographic fieldwork on autism in 2008. It was her research subjects who told her “You are autistic, like us!”
Until 2013, the healthcare profession diagnosed people with either ADHD or autism. We now know that it is relatively common for people to have a combination of both conditions, and more and more people are being diagnosed with both.
“One problem, however, is that ADHD and autism can mask each other. This can make it difficult for society and investigators to ’see’ autism or ADHD, because they are looking for more stereotypical expressions of either autism or ADHD.”
People with ADHD or autism are over-represented among students who do not gain qualifications for upper secondary school. One contributing factor is that education and teaching are adapted to the learning styles of neurotypicals, and school environments can be sensorily inaccessible for people with autism and ADHD, for example because of high noise levels, poor structure and clarity in the teaching or a lack of formative assessment.
Bertilsdotter Rosqvist is critical of how using neurodevelopmental disorder diagnoses as a starting point leads to a focus on functional deficiencies rather than how people function, and she believes that this is because the research has been conducted with an outsider’s perspective.
As she sees it, people with ADHD do not have an inability to concentrate, but an ability to concentrate that is varied and interest driven. If a teacher were to say that a student with ADHD has difficulty focusing, she might turn that around and say “Yes, because you speak in an unstructured way, your lecture is too long and it doesn’t capture the student’s interest.”
She points out that the difficulty a person with ADHD has is how to regulate their focus and to focus on what they are expected to focus on at that moment.
“There are many things that can interfere with their concentration, but once they actually focus, they can do it 200 per cent. That hyper-focus is a golden grail.”
One thing that people with ADHD and autism have in common is a greater risk of burnout. Bertilsdotter Rosqvist describes it as two kinds of brains that consume extra energy – a processor that handles large amounts of data simultaneously and a typewriter that produces the words letter by letter.
Moreover, these brains do not always rest in the same way as neurotypical brains. A coffee break in the workplace, for example, can involve energy-intensive social interaction and sensory overload. It is therefore particularly important for people with ADHD and autism to be allowed to use the recovery methods that work for them.
Åsa Samuelsson is a senior lecturer in occupational health science at the University of Gävle and has suffered from exhaustion at times. She was diagnosed with ADHD last year and believes her ADHD has contributed to her fatigue. She now realises that her energy levels are naturally uneven – on some days she can work for 11 hours, while on other days she cannot do much at all.
Hybrid working allows her to adapt her work more easily according to her energy levels, and the resting room at work allows her to sleep for half an hour when she needs to. Since telling her manager about her diagnosis, she has been granted more flexibility in her work schedule. ”But I need a more long-term solution for how it will work for me. I think I have taken responsibility by telling my boss about my diagnosis, but a lot has been left up to me to sort out by myself,” she says.
Åsa Samuelsson
Senior lecturer in occupational health science at the University of Gävle
She needs to be able to shut herself away and choose when she will be sociable. She is easily disturbed by some sights and sounds and by some forms of light. She is prone to making mistakes when doing administrative tasks, but she now gets some support from a teaching assistant. She has asked her manager for clear instructions and deadlines for her work.
After receiving her diagnosis, Samuelsson realised why she has never felt like she could really fit in.
“I think differently, see things in a different way and often lift things to a higher perspective. I question, dare to say what I think, lose interest quickly and want to move on.”
Her intellectual strengths have not always been well received socially.
“You’re the annoying one who doesn’t just accept how things are but wants to do things differently.”
As a child, she initially enjoyed school and found it quite easy. Secondary school and high school were tougher.
“I had trouble focusing, lost things, missed information and daydreamed. But I could get help from others. At university, social life took over, but I studied hard the night before exams and passed.”
Her years as a doctoral candidate were also tough. She found it easy to come up with ideas, but more difficult to continue and complete work. And she was always late for supervisor meetings.
“I got so angry with myself. How hard could it be? I would get up two hours earlier but still arrive late. I was also sensitive to negative feedback and could start crying, which may be linked to ADHD.”
Despite the challenges, she completed her PhD.
“I was determined that I was going to do it. I really wanted to get a doctorate. And I think it helped that we were several co-authors. That pushed me.”
One important consequence of her ADHD diagnosis is that she has become more forgiving of herself.
“It’s hard being labelled as lazy, uninterested or nonchalant, when there are other underlying reasons that the individual has difficulty controlling.”
She can now also use this understanding when she herself supervises doctoral candidates. She can create a model that works for her own supervision, and she can more easily identify difficulties that the doctoral candidate may have.
“It’s up to the doctoral candidate to tell you if they have been diagnosed, but you can open up for such conversations. Summarise the difficulties you see and ask what the doctoral candidate needs to be able to succeed.”
Samuelsson has chosen to be open about her diagnosis, both to colleagues and students. “If I, who teach occupational health and discrimination, can’t be open about my disability, then who can?”
Together with her colleague Åsa Hedlund, she is now planning a research project on how flexible working life works for individuals with neurodevelopmental disorders. One important perspective they want to include is whether their research subjects also have children with neurodevelopmental disorders. This is common, and it is another factor that impacts health and the ability to work.
“We need to gain a better understanding of this,” says Samuelsson.
Her colleague, Åsa Hedlund, is a senior lecturer in health sciences and was diagnosed with autism four years ago, at the age of 38. She had previously worked as a nurse. She just scraped into university through the university entrance exam. During high school, she had a lot of unauthorised absence. She was bored and thought she was not very smart.
When she was just over 30, she took the entrance exam for Mensa, an organisation for people with an IQ of at least 131.
“I had to check whether I was stupid or not.”
When she scored full marks in the test, it was a turning point in her life.
“I thought, okay, I’m obviously not stupid, maybe I have potential. It gave me the courage to grab hold of my life and do a doctorate.”
Åsa Hedlund
Senior lecturer in health sciences at the University of Gävle
Now work is her main interest and she can perform at a high level. The understanding she has gained about her autism has improved her quality of life.
“I can be more relaxed in the knowledge that some things are difficult and that it’s okay. It’s not that I’m a lazy and bad person.”
Hedlund describes herself as very analytical, logical and structured.
“But I’m not a visionary, so maybe I shouldn’t have that kind of role, but analyse and maintain order instead.”
She enjoys her role as a teacher. She feels that she remembers what it was like to be a student and that she can explain things in a logical way so that people understand her.
“I enjoy seeing people develop and I am working with a subject that I find interesting.”
She finds it difficult, however, to spend time with people just to socialise. Making small talk without exchanging information. Like at coffee breaks, parties, dinners or group development activities at work. She finds such situations under-stimulating and energy-sapping.
“I panic and don’t know how to behave. I don’t think that develops relationships either.”
She builds her relationships by working with others.
“I may not be interested in forming and developing relationships, but I am interested in people and ask questions to get to know them. I find it easier to use a chat than to talk, because then I don’t have to worry about facial expressions, tone of voice and chipping in with words and comments.”
Hedlund explains that people with autism do not always automate things in the same way as most others. This means that even normal everyday tasks can require mental energy, and routines become important to ensure that they have enough energy for other things. For her, therefore, travelling for work means that she needs extra space for rest and privacy, not more socialising outside work.
She therefore prefers not to travel together with colleagues and does not participate in social activities. She would like to see more widespread understanding of these needs. “And working lunches are an abomination! For some, a working lunch is normal when there’s not enough time, but I need to be left alone at some point in the day. In our organisation, nobody minds if you go off and eat alone, and that’s nice. At my previous workplaces, that would have been regarded as really weird.”
In group work, group discussions and brainstorming, it can be challenging for Hedlund to contribute. There are too many stimuli. She needs to sit and think in peace and quiet. In such contexts, it is easier for her if the work is at least structured, that she has the opportunity to think about the questions in advance and contribute ideas afterwards.
As people with autism can have a heightened sensitivity to stimuli, the sensory environment is an important factor, and the ability to sit in privacy can be crucial for work performance.
“I have trouble with bright overhead lighting. It can make me feel a bit dizzy. And I have trouble with certain sounds and patterns.”
Åsa Hedlund thinks it does not make sense that there is so little awareness of neurodevelopmental disorders in academia.
“Autism or ADHD are probably just as common as left-handedness, especially in academia, but employers know nothing about it.”
She thinks the issue should be discussed at workplace meetings and in staff dialogues. The goal should be to make the workplace accessible to the whole spectrum of neurodiversity. “Maybe you don’t need to talk about diagnoses, but about characteristics, because everyone is different. How do you deal with stimuli? Do they bother you? Are you able to plan your work according to your energy levels?”
She thinks that colleagues should question their own preconceptions and realise that what is obvious to you may not be obvious to others.
“If someone chose to do research because they are interested in a subject, they may not also be a genius at collaborating. But people can work in teams and complement each other. And you don’t have to be the best at collaborating, but you can do your best.”
Your manager is responsible for your work environment
Employers have a general obligation to prevent ill health at work. When the general design of the work environment is not sufficient for an employee to perform their duties, the employer must make individual adjustments. If the organisation does not have the expertise required, it must seek expertise externally.
Source: The Swedish Work Environment Authority
