Near the beautiful castle in Örebro, Sweden 2018, we kicked off our new network of enthusiastic researchers working in the ADHD research field. This network consists of early and mid-career researchers who work on topics related to ADHD across the lifespan and have a link with one of the IMpACT (International Multicenter persistent ADHD CollaboraTion) projects.
Our network has the aim to unite the knowledge of the individual young researchers in the field of ADHD to boost the further development of our field. Furthermore, we aim to facilitate the exchange of students and offer them international experiences in our research labs. Our final aim is to have closer ties between the members. This way it will become easier to replicate research findings, collaborate and brainstorm with researchers that work on related topics.
In Frankfurt 2019 we decided to start working towards a first collaborative project. More about this will follow soon.
Our work can be followed here on ‘mind-the-gap.live’ by our tag ‘impactnextgen’
This year’s ADHD Awareness Month was themed “ADHD myths and facts, know the difference”. As scientists, we feel that it is our role to spread the facts about ADHD. But what myths are there about ADHD? To get a better idea of this, we chose to interview people and just ask them what they know about ADHD. What are the symptoms? How do you get ADHD? Can adults have ADHD?
The people that we interviewed actually were quite well informed about ADHD. Most know that people with ADHD have problems with controlling their attention, with sitting still and that they often have a lot of energy. And about half the people that we interviewed suspect that also adults can have ADHD. But we also noticed some myths.
Myth 1: People with ADHD are always active and have a lot of energy
ADHD is not just characterised by hyperactivity and restlessness. Many people with ADHD are actually quite capable of sitting still, but suffer more from a kind of inner restlessness and mindwandering. Also problems with focussing attention are very typical for ADHD, and there are people who only have this inattentive ADHD subtype, without the hyperactivity. What many people also don’t know is that people with ADHD often suffer from emotional dysregulation such as regalting your emotions and easily getting irritable or angry.
Myth 2: Only children can have ADHD
Although ADHD is wellknown in children, adults can also have ADHD. It is estimated that around 15% of the children with ADHD will continue to have the full diagnosis in adulthood. But about 60 – 80% of children with ADHD will still have symptoms of ADHD when they are adults. Often, the hyperactivity symptoms of ADHD reduce when children get older, but the inattention symptoms often remain.
These videos were created with help of early career scientists of the CoCA project (www.CoCAproject.eu)
ADHD is classified as a neurodevelopmental disorder. This implies that ADHD starts during childhood and may, or may not, last into adulthood. According to this definition, a diagnosis of ADHD in adults requires two separate criteria to be satisfied: (i) Present diagnostic criteria must be fulfilled and (ii) ADHD symptoms must have started during childhood (before 7 years of age in DSM-IV and 12 years in DSM-5).
It’s relatively easy to evaluate present symptoms and differential diagnoses and to make a clinical decision. However, the second requirement has generated much headache and frustration. Is it really possible to evaluate childhood symptoms in a typical 40 year old patient, decades after the person left school and with limited documentation from family and peers?
Some argue that the criteria of childhood symptoms of ADHD are not satisfied unless there is a well-documented record of child developmental problems. Others put more faith in personal (subjective) recollection of childhood memories. These diverging views have culminated in an intense and heated debate about the possible existence of adult-onset ADHD and whether age-of-onset criteria are meaningful in clinical management of ADHD (1).
We all know from experience that memories tend to fade. Memories cannot be trusted. Research has shown that memories can be systematically biased and manipulated in many ways. Experimental psychology has provided a long list of well documented examples of memory bias, including mood congruent memory bias, consistency bias, positivity effect when older people favor positive over negative information in their memories, suggestibility bias when ideas suggested by the clinician are mistaken for true memories etc. (2). All of these effects and many more are well documented in forensic psychology and popular press and are experienced in routine clinical practise.
Despite of the obvious limitations of retrospective recollection of childhood experiences, a diagnosis of ADHD in adults is routinely based on retrospective reports of childhood experiences, often in the form of semi-structured interviews or rating scales. The Wender Utah Rating Scale (WURS) is the most widely used retrospective rating scale of childhood ADHD symptoms (3). The 25-item version of WURS has acceptable psychometrical properties, but its long-term stability is not known and it is also unclear how WURS scores are affected by other concurrent symptoms and conditions.
To investigate these factors, Lundervold and coworkers recently examined the test–retest reliability of the WURS in 85 adults with ADHD and 189 controls. They found that WURS scores were relatively stable over a time-span of seven years, but also that the scores were strongly influenced by present ADHD symptom severity, as well as other concurrent psychiatric disorders (4).
Based on these observations, the authors conclude that the WURS may be valuable in diagnostic assessments of ADHD, but that clinicians need to be cautious in the interpretation of the results. We all need to be aware of the many factors that can distort recollection of childhood memories. This study also demonstrates how difficult it is to strictly apply the age of onset criteria in adult psychiatric clinical settings.
Franke B, Michelini G, Asherson P, Banaschewski T, Bilbow A, Buitelaar JK, Cormand B, Faraone SV, Ginsberg Y, Haavik J, Kuntsi J, Larsson H, Lesch KP, Ramos-Quiroga JA, Réthelyi JM, Ribases M, Reif A.Live fast, die young? A review on the developmental trajectories of ADHD across the lifespan. Eur. Neuropsychopharmacol. 2018 Oct;28(10):1059-1088.
Schacter DL, Dodson CS. Misattribution, false recognition and the sins of memory. Philos Trans R Soc Lond B Biol Sci. 2001 Sep 29;356(1413):1385-93.
Stein MA, Sandoval R, Szumowski E, Roizen N, Reinecke MA, Blondis TA, et al. Psychometric characteristics of the Wender Utah Rating Scale (WURS): reliability and factor structure for men and women. Psychopharmacol Bull 1995;31:425–33.
Lundervold AJ, Vartiainen H, Jensen D, Haavik J. Test-Retest Reliability of the 25-item version of Wender Utah Rating Scale. Impact of Current ADHD Severity on Retrospectively Assessed Childhood Symptoms. J Atten Disord. 2019 Oct 4:1087054719879501.
It’s October, and that means that it’s ADHD Awareness Month again. Throughout this month people all across the globe will be raising awareness about Attention Deficit Hyperactivity Disorder (ADHD). As ADHD researchers, we of course contribute to this by sharing with you what we know – and what we yet don’t know – about ADHD.
To start off, let’s re-watch the beautiful mini-documentary that was created last year: Shine a light – understanding ADHD. In this video we see several people with ADHD as well as ADHD researchers, who all explain how they see, experience and investigate ADHD.
This year’s ADHD Awareness Month is about myths and facts. On this website you can find some very nice articles that clearly explain the facts: for instance why ADHD is not an excuse for laziness, and why about half of the children with ADHD do not grow out of it when they reach adolescence and adulthood. For this last reason, many of us are studying ADHD in adulthood. For instance in the IMpACT research consortium.
In a few weeks we will be releasing a series of videos in which some more myths about ADHD are being debunked. These videos are being created by researchers from the CoCA-consortium. The research done in this consortium is aimed to stop the spiral from ADHD into depression and obesity, as was written in this nice article by the European Commission.
Another intersting new research theme is whether lifestyle choices such as diet and exercise can influence how we behave and feel. If you want to learn more about this, I refer you the website New Brain Nutrition, which has several very interesting learning modules, as well as a nice blog.
We hope that through these websites we inspire you to learn more about ADHD. Know the facts, and bust the myths!
Do you sometimes find it difficult to pay attention? Can you be very disorganized at times, or very rigid and inflexible? Although difficulties with attention, organization and rigidity are symptoms of psychiatric disorders, these traits are not unique to people with a diagnosis. And that is very useful for studying the genetics of psychiatric disorders.
Being easily distracted, liking things to go in a certain way, having a certain order in the way you do things, these might all be things you recognize yourself (or someone you know) in, while you (or they) are not diagnosed with any psychiatric disorder. We actually know that many of these symptoms are indeed found in a range in the general population, with some people showing them a lot, some a little and some not at all. If these symptoms are also present in people without a diagnosis then why should we only study people with a diagnosis to learn more about the biology of symptom-based disorders?
Many psychiatric disorders, like attention-deficit/hyperactivity disorder (ADHD) and autism spectrum disorder (ASD) are disorders that ‘run in the family’. Using family-based and genetic studies it was found that they are actually highly heritable. However the underlying genetic risk factors turned out to be difficult to find. Enormous samples sizes (comparing more than 20 000 people with the disorder to even more individuals without the disorder) were needed to robustly find just a few genetic risk factors, although we know that many more genetic factors contribute. Even though these disorders are highly prevalent, collecting genetic data on psychiatric patients for research is still challenging. Using population-based samples – that include all varieties of people from the general population – can be a good alternative to reach large sample sizes for powerful genetic studies.
Taking together the fact that psychiatric-like symptoms are also, to a certain degree, present in the general population, and the fact that genetic studies can benefit from large(r) sample sizes to find genetic associations, it can be very interesting to study psychiatric-like traits in population-based samples. This is indeed what happened in the field of psychiatric genetics. The first proof-of-concept studies were able to show an astonishing overlap in genetic factors of more than 90% between ADHD and ADHD symptoms in the general population. Our own research group was able to show that certain autistic traits, like rigidity, indeed share a genetic overlap with ASD and that genes that were previously linked to ASD show an association to autistic traits in the population. These results show that genetic factors involved in disorder-like traits are overlapping with genetic factors involved in the clinical diagnosis, and therefore can indeed be used to study the biology of psychiatric disorders.
So next time you feel distracted/rigid/disorganized, don’t get discouraged, but consider signing up for a genetic study. Science might need you!
Janita Bralten is a postdoctoral researcher at the department of Human Genetics in the Radboud university medical center, Nijmegen, the Netherlands. Her research focusses on the genetics of psychiatric disorders.
Bralten J, van Hulzen KJ, Martens MB, Galesloot TE, Arias Vasquez A, Kiemeney LA, Buitelaar JK, Muntjewerff JW, Franke B, Poelmans G. Autism spectrum disorders and autistic traits share genetics and biology. Mol Psychiatry. 2018 May;23(5):1205-1212.
Middeldorp CM, Hammerschlag AR, Ouwens KG, Groen-Blokhuis MM, Pourcain BS, Greven CU, Pappa I, Tiesler CMT, Ang W, Nolte IM, Vilor-Tejedor N, Bacelis J, Ebejer JL, Zhao H, Davies GE, Ehli EA, Evans DM, Fedko IO, Guxens M, Hottenga JJ, Hudziak JJ, Jugessur A, Kemp JP, Krapohl E, Martin NG, Murcia M, Myhre R, Ormel J, Ring SM, Standl M, Stergiakouli E, Stoltenberg C, Thiering E, Timpson NJ, Trzaskowski M, van der Most PJ, Wang C; EArly Genetics and Lifecourse Epidemiology (EAGLE) Consortium; Psychiatric Genomics Consortium ADHD Working Group, Nyholt DR, Medland SE, Neale B, Jacobsson B, Sunyer J, Hartman CA, Whitehouse AJO, Pennell CE, Heinrich J, Plomin R, Smith GD, Tiemeier H, Posthuma D, Boomsma DI. A Genome-Wide Association Meta-Analysis of Attention-Deficit/Hyperactivity Disorder Symptoms in Population-Based Pediatric Cohorts. J Am Acad Child Adolesc Psychiatry. 2016 Oct;55(10):896-905.
If you are interested in joining a scientific study see for example:
Cocaine is one of the most used illicit drugs worldwide and its abuse produces serious health problems. In Europe, around 5.2% of adults (from 15 to 64 years old) have tried cocaine, but only 20% will develop addiction. Why? Genetics is part of the answer. Cocaine dependence is a complex psychiatric disorder that results from the interaction of both environmental and genetic risk factors. Twin and adoption studies indicate that genetic alterations contribute substantially to cocaine dependence susceptibility, which has an estimated genetic load (heritability) as high as 65-79%. Although many studies with focus on candidate genes have been performed, only a few risk variants for cocaine dependence have been identified and replicated so far.
In this study we performed a meta-analysis of genome-wide association studies (GWAS) of cocaine dependence using more than 6,000 European ancestry individuals. This approach allowed us to inspect a huge number of genetic variants distributed all along the genome that are common in the general population. We identified a gene (HIST1H2BD) associated with cocaine dependence that is located in a region on chromosome 6 enriched in genes that encode histones, proteins that combine with DNA, protecting it and contributing to the activation (or inhibition) of genes. Some of these genes have previously been associated with schizophrenia.
Several studies have shown that substance use disorders (SUD), and especially cocaine dependence, co-occur in patients with other psychiatric disorders and personality traits. Such comorbidity is associated with increased severity for all disorders, although it is unclear whether this relationship is causal or the result of shared genetic and/or environmental risk factors. We calculated the shared genetics (genetic correlation) between cocaine dependence and six comorbid conditions. For the first time we found significant genetic correlation with attention deficit/hyperactivity disorder (ADHD), schizophrenia, major depression and risk- taking behavior. We also used another approach (polygenic risk score analysis, PRS) to prove that all tested comorbid conditions are associated with cocaine dependence status, suggesting that cocaine dependence is more likely in individuals that carry genetic risk factors for the tested conditions than in those that do not.
To our knowledge, this is the largest reported GWAS meta-analysis in European-ancestry individuals with cocaine dependence. We identified suggestive risk factors for the disorder in several genomic regions and found evidence for shared genetic risk factors between cocaine dependence and several co-occurring psychiatric traits. However, the size of the sample is still limited and further studies are needed to confirm our results.
Brisk/Risks: Go on – what’s the worst that can happen? (15-minute film with BSL) from kaisyngtan on Vimeo. Freeze frame shows participants Jaye Braithwaite with BSL interpreter Jacqui Beckford.
Attention deficit hyperactivity disorder (ADHD) is popularly associated with being easily distracted. Its other features, such as out of the box thinking, hyperfocus or risk-taking seem to be less discussed beyond specialist contexts. Brisk/Risks was a fun, accessible and engaging open mic event exploring risk-taking within and beyond the framework of ADHD and mind wandering. It featured King’s College London’s Professor of Psychiatry Philip Asherson, ADDISS Chief Executive Founder and President of ADHD Europe Andrea Bilbow OBE, and Wellcome Trust-funded medical humanities scholar Dr Sophie Jones, amongst others, and was curated by artist Dr Kai Syng Tan. Brisk/Risks took place on 4 December 2018 at Bush House, London, UK. The event was part of the ‘King’s Artists – New Thinking, New Making’ exhibition, featuring Tan’s exhibition of a large tapestry from #MagicCarpet, which was her project mentored by Asherson (since 2017). The film version of the event (15 minutes) is BSL-interpreted and edited by Studio Maba. The film premiered at Birkbeck Arts Week 2019, which included an exploration by Tan of the contested term of ‘neurodiversity’. In this blog post, Kai shares 2 transcripts from the evening, of presentations by Kai and one of the participants, Jaye Braithwaite, a ‘Creative, Tourettist and Teaching Assistant’. Read Kai’s own reflections on the open-mic and film here.
TRANSCRIPT: Opening provocation by Tan
Do you take risks? Why? Why not? What’s the riskiest thing you’ve ever done? Do you regret it?
Are you risk-adverse? What could be the opposite of risk-seeking? Pragmatism? Common sense? Does survival come into play? Does courage or naivety come into play? Does play and pleasure come into play?
Flip side: Failure? Up-side: Resilience?
Risks and opportunities. Truths or dare. Live fast die young. Crime and Misdemeanours. Health and safety? Sense and sensibility? Cock and bull. A well-known university states: ‘risk-taking produces innovation. That’s why our classrooms are safe spaces for our students to take risks’. Yeah right. We call students ‘clients’ and promise them nothing less than a 2:1. How’s that for innovation?
Seeking novelty, cheap thrills or doing extreme sport because your ADHD brain is under-aroused. Stealing flapjacks from a shop everyday for four years because it gives you a kick — and you didn’t even like flapjacks. Sorry UCL. Having your film banned, tapes confiscated by the government because you’re not allowed to talk politics there. Upheavals: walking out of your family, country, relationships permanent jobs — as the norm, to work on this project for example.
If you have ADHD, your child has 25% chance of also having ADHD – congratulations.
Research commissioned by Eclipse, a black-led theatre company in Sheffield, reveals how when black artists are told that their work is ‘high risk’, it’s ‘simply an excuse for racism’.
Is humanity under threat from the rise of AI? Is democracy dead? — Do we care? Forests are burning. The earth is dying, ice is melting — and we’re put on our bikinis, sunbathing, basking in the heatwave. Heroes like Aung Sun Suu Kyi have fallen. Left standing, on centre-stage, at the far right, are jesters, cowards. Movement, a human right under Article 13 of the Universal Declaration of Human Rights, is endangered. Walls physical and invisible are erected, borders hardened, our minds closed, as we fear the other, retreat to our tribes hide behind screens. We stop taking risks, as artists, scientists, researchers, makers, citizens, and only go for tried and tested options. Work with or fund something/someone unfamiliar? Don’t be silly. We feel impotent, so we punch down, not up. We’re so busy fighting amongst ourselves, that we’ve become what Stephen Fry calls ‘illiberal liberals’ and ‘irrelevant and outdated bystanders’. The masses have shown that they can’t be trusted. So is now the time for a new profound theory, as Slavoj Žižek argues?
What if human beings didn’t go to the moon? What if, 2 million years ago, our ancestors didn’t run long distances — 6 hours, 30 kilometres, after the antelope –to hunt them down? Would the Homo erectus have died of starvation? What if migrants who risk everything to give their kids better lives give up and ‘go home’, as people around them keep telling them for centuries? What if entrepreneurs with ADHD like Richard Branson didn’t risk everything and start their businesses?
What if no one comes to my first ever – and possibly last — open mic? What if people come but no one comes up to speak? Will this spell the end of my career as an artist-curator?
It’s OK. I have a plan B. It’s our secret — that’s why I’m whispering. I’m coming up with my own brands of perfume. It’s targeted at people who think ADHD doesn’t exist. So when they use it, it makes them ‘a little bit more ADHD’: more restless, more reckless.
One is called Impulse. The other? Risk.
Would you buy it?
TRANSCRIPT: Presentation by Jaye Braithwaite
I shouldn’t be hiding
There’s no denying
That I’ve got Tourettes
I tic I shout I move all about
Let’s do adhd next
I can’t keep still
I can’t concentrate
I can’t wait
My mind races
The competition is real
I get that urge to tic …The thought, the feel
Sometimes it’s good
Sometimes it’s bad
Other times I’m happy
Other times I’m sad
The creativity I get
The way it hits me
I feel so free
Writing at 3am
Paper and pen
Ticcing at dawn
Sleeping at noon
It all just happened
Won’t be ending too soon
I like to think
Think think think
Or am I just weird
I used to be angry
But I realised I was Just scared
Scared of people
And how they would react
It would cause me to act
Act normal or whatever that is
These weird things about me I hid
Hid them well
Until my head began to swell
I couldn’t take it anymore
It was time to pour
I’ve got adhd and Tourettes
And I’m allowed
Allowed to be myself
Now I can be
I can be finally free
*See film trailer version of the film Brisk/Risks here.
*See images and feedback of premiere of the film at Birkbeck, University of London, on 21 May 2019 here. The film premiere was part of Too Much/Not Enough: Neurodiversity and Cultural Production, of the Birkbeck Arts Festival, The evening featured 2 new provocations by Kai, alongside medical humanities scholar Dr Sophie A Jones and curator Alessandra Cianetti. Listen to podcast here and read the transcript of Kai’s response to the open mic/film, on risk-taking and leadership, here, and a provocation on the contested term ‘neurodiversity’ here.
The open mic and film are part of ‘We Sat On A Mat and Had a Chat and Made Maps! #MagicCarpet (from 2017), which is an art-science exploration which gathers diverse and divergent bodies (and bodies of knowledge) to explore difference and (neuro)diversity, with ADHD and how it relates to mind wandering as a starting point. #MagicCarpet was a 2017 Unlimited commission funded by Arts Council England, with additional support by King’s College London. Thus far, #MagicCarpet has reached more than 9000 people, including through Arts in Mind and Unlimited Festivals. Venues include Science Museum, Southbank Centre, South London Gallery, Art Workers’ Guild and the Peter Scott Gallery (Lancaster). Publications include an article that was read 2000 times within 2 days of publication in The Conversation (10.6 million readers) and a top 2018 editorial on neurodiversity and women in Disability Arts Online. 100% of the feedback for an event stated that the work has challenged their understanding of how the arts and science can collide and create new insights. AHRC reviewers have described a proposal of next phase of the work as ‘exciting and innovative’; ‘already leading the way’ and ‘with an impressive track record’. #MagicCarpet was awarded a prize for ‘Cultural Change’ by the National Coordinating Centre for Public Engagement (2018). Dr Kai Syng Tan FRSA SFHEA was the project’s lead and the first artist-in-residence at the Social, Genetic & Developmental Psychiatry Centre. An artist, consultant, curator and academic, Tan is best known for gathering diverse and divergent bodies and bodies of knowledge to engineer spaces of ‘productive antagonisms’ (Latham & Tan 2016) across disciplinary, geopolitical and cultural boundaries, in what she calls an interdisciplinary ‘ill-disciplined’ approach (Tan & Asherson 2018). Marked by an ‘eclectic style and cheeky attitude’ (Sydney Morning Herald 2006), ‘radical interdisciplinarity’ (Alan Latham 2016) and ‘positive atmosphere’ (Guardian 2014), she is recognised as ‘absolutely central’ for the emerging ‘Running Studies’, and was Visual & Communications Director for the £4m Opening and Closing Ceremonies of 8th ASEAN Para Games (2015).