“No I do not have ADHD, I am just busy!”, but still very interesting for genetic studies!

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.

Further reading:

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:

https://www.ru.nl/donders/vm-site/proefpersonen/engelse-versies-centers/participants/donders-centre-cognition-en/

or

https://www.impactadhdgenomics.com/patienten/nl/deelnemen (Dutch only)

Cocaine dependence is in part genetic, and it shares genetic risk factors with other psychiatric conditions and personality traits.

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.

https://www.
flickr.com/photos/30478819@N08/24042216187

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.

Read more at: https://www.sciencedirect.com/science/article/pii/S0278584619301101?via%3Dihub

Judit Cabana-Domínguez and Bru Cormand

Judit Cabana Domínguez is a Postdoctoral researcher at the Genetics, Microbiology and Statistics Department at the University of Barcelona.

Bru Cormand is Full Professor of Genetics at the Genetics, Microbiology and Statistics Department at the University of Barcelona.

Risk-taking and ADHD?

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.

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Andrea Bilbow OBE with BSL interpreter Jacqui Beckford. Photograph by Alessandra Cianetti.

 

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?

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Some of the comments for the evening.

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

Absolutely

Disorganised

Happily

Daydreaming

 

I can’t keep still

I can’t concentrate

Easily distracted

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’m unique

So unique

 

I like to think

Think think think

 

I’m unique

I’m special

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

Show myself

Be proud

I’ve got adhd and Tourettes

 

And I’m allowed

Allowed to be myself

No filter

Just me

Now I can be

I can be finally free

 

 

LINKS

*See film trailer version of the film Brisk/Risks here.

*See gallery and feedback of 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.

* Find out more about #MagicCarpet here

The Conversation article by Tan and Asherson: On the salience of high quality art in mental health

*BMJ medical humanities article: On thought-leadership of arts & philosophy inculture change (review of Mohammed Rashed’s book on mad activism)

*Disability Arts Online article: On neurodiversity & women

*PsychART article: On #ADHD women making #ADHD art

*A-N Artists’ Information article: On mind wandering: Best Friend/Worst enemy

*KCL Culture story: On being the first artist-in-residence, Social, Genetic & Developmental Psychiatry Centre

ABOUT #MAGICCARPET

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).

2018Dec4_MagicCarpet_OpenMic_KingsArtists_6_KaiSyngTan
Audiences, including Professor Philip Asherson in the front row, enjoying the open mic. 4 December 2018, Bush House, London, UK.

 

10 Years of progress in Adult ADHD

This year will celebrate 10 years of the UK Adult ADHD Network. During that time we have seen a rapid advance in our understanding of ADHD across the lifespan, the availability of diagnostic services and access to effective treatments. Advances seen in the UK are also seen in many other countries across the EU and worldwide.  The meeting will highlight key advances in our understanding of course and outcome; genetic, environmental, and neuroscience of ADHD; and topics relevant to the diagnosis and treatment of ADHD from adolescence to early and late adulthood.

Aims of the Conference

This meeting aims to raise the level of knowledge and expertise among health care professionals about adults with ADHD and provide a better understanding of the persistence of the disorder, the development of comorbid mental health problems and the delivery of effective treatments. The program will be delivered by prominent opinion leaders, clinical experts and internationally recognised investigators.

Speakers

The selection of speakers is important so that the audience can hear directly from the most experienced professionals working in this rapidly developing area of clinical psychiatry.

Speakers will include : David Nutt, Eric tayor, Anita Thapar, Alexandra Philipsen, Ian Wong, Samuele Cortese,  Philip Shaw, Jessica Agnew-Blais and Pravina Rudra.

Welcome Reception – Art with Heart

There will be a welcome reception hosted by UKAAN on the evening of Thursday 12th September. This will be preceded by a Performance of ‘Declaration’ by Art with Heart. Developed in consultation with medical professionals, ADHD and mental health support groups, ‘Declaration’ examines when we want, need or are forced to declare our differences, and the faces we wear to fit in. Numbers are limited, so early booking is advised! 

Click here to register and for further details.

 

 

Pay Attention to ADHD – Podcast with prof. Stephen Faraone

Professor Stephen Faraone – professor in Psychiatry at SUNY Upstate University and expert on ADHD – was interviewed by dr. Therese Markow for the podcast series ‘Critically Speaking’. In this podcast they discuss myths about ADHD and the scientific evidence that debunks these myths. Stephen Faraone explains why it is so important to diagnose and treat ADHD early. He also explains why ADHD is often undiagnosed in girls, and why sometimes adults are diagnosed with ADHD who have not sought treatment earlier in their life.

Critically Speaking is a podcasts series hosted by dr. Therese Markow who interviews experts to discuss in plain language complex issues that concern our health, society and planet.

You can listen to the podcast here: http://criticallyspeaking.libsyn.com/002-pay-attention-adhd-with-dr-stephen-faraone

 

Can virtual reality help in the treatment of ADHD?

Virtual-reality (VR) can be defined as an interactive computer-generated experience that can be similar to the real world or fantastical1. For instance, in a VR environment, a person is able to virtually live in the artificial world by looking and moving around it, as well as interacting with virtual characters or items2. Nowadays there are different kinds of VR environments, mainly used for entertainment purposes (e.g. video-games) or professional training (e.g. aviation, military training etc.)3. VR tools usually  range from a headset  (head-mounted displays with a small screens in front of the eyes), to proper full-scale rooms with bigger screens and special equipment  to increase the augmented reality experience.

Virtual reality head-mounted display. Image by Gerd Altmann from Pixabay.

VR has been recently investigated as a potential treatment for different metal health problems or psychiatric disorders such as social anxiety4, specific phobias5, post-traumatic stress disorder (PTSD)6, or persecutory delusions7. The key assumption behind the use of VR tools in mental health practice, relies in the fact that, in VR settings, individuals can repeatedly experience and learn appropriate coping strategies in a controlled environment8,9. For instance, knowing that the exposure is not real, allows people to face difficult situations and learn therapeutic strategies which they can then adopt in the real world.

..but how those VR tools can be used for the treatment of ADHD?

Recent evidence shows that VR can help enhance some of the core therapeutic challenges of ADHD such as attention, problem solving and managing impulsive behaviours10. For example, using VR can create virtual scenarios that can reward and empower skills such as response inhibition and emotional control10. One of the most commonly used scenarios is the class-room environment, which can introduce life-like distractions to asses children’s behaviour in an ecologically-based setting 10-11. In this virtual environment children with ADHD may be more able to use the trial-and-error instructional strategies to train learning skills11. For instance, in these VR settings, children with ADHD can also learn strategies to use in the real world without experiencing failures due to their experiences at school, making them more willing to accept the private feedback of the VR teacher.

Although VR ca be potentially used in ADHD treatment, is still an experimental procedure that needs more research to assess its validity. Also, there are still some concerns regarding potential side effects of long-term VR exposure, such as headaches, seizures, nausea, fatigue, drowsiness, disorientation, apathy, and dizziness10. Overall, despite its therapeutic potential, more studies are needed to assess its long-term treatment efficacy as well as the efficacy of VR environments compared to other non-pharmacological treatments already available for ADHD.

Isabella Vainieri and Jonna Kuntsi

Isabella Vainieri is a PhD student at the Social, Genetic & Developmental Psychiatry Centre at King’s College London.

Jonna Kuntsi is Professor of Developmental Disorders and Neuropsychiatry at King’s College London.

References

  1. Burdea, Grigore C. and Philippe Coiffet. Virtual Reality Technology. John Wiley & Sons, 2017.
  2. Rizzo AA, Buckwalter JG, Neumann U. Virtual reality and cognitive rehabilitation: a brief review of the future. J Head Trauma Rehabil. 1997;12:1–15.
  3. Johnson D. Virtual environments in army aviation training; Proceedings of the 8th Annual Training Technology Technical Group Meeting; Mountain View (CA), USA. 1994.
  4. . Maples-Keller JL, Bunnell BE, Kim SJ, Rothbaum BO. The Use of Virtual Reality Technology in the Treatment of Anxiety and Other Psychiatric Disorders. Harv Rev Psychiatry. 2017;25(3):103–113.
  5. Roy S, Kavitha R. Virtual Reality Treatments for Specific Phobias: A Review. Orient.J. Comp. Sci. and Technol;10(1).
  6. Rizzo A’, Shilling R. Clinical Virtual Reality tools to advance the prevention, assessment, and treatment of PTSD. Eur J Psychotraumatol. 2017;8(sup5):1414560. Published 2017 Jan 16. doi:10.1080/20008198.2017.1414560
  7. Freeman, D., Bradley, J., Antley, A., Bourke, E., DeWeever, N., Evans, N., Černis, E., Sheaves, B., Waite, F., Dunn, G., Slater, M., & Clark, D. (2016). Virtual reality in the treatment of persecutory delusions. British Journal of Psychiatry, 209, 62-67.
  8. Sanchez-Vives M, Slater M. From presence to consciousness through virtual reality. Nat Rev Neurosci 2005; 6: 332–9
  9. Slater M, Rovira A, Southern R, Swapp D, Zhang J, Campbell C, et al. Bystander responses to a violent incident in an immersive virtual environment. PLoS One 2013; 8: e52766.
  10. Bashiri A, Ghazisaeedi M, Shahmoradi L. The opportunities of virtual reality in the rehabilitation of children with attention deficit hyperactivity disorder: a literature review. Korean J Pediatr. 2017;60(11):337–343.
  11. Bioulac S, Lallemand S, Rizzo A, Philip P, Fabrigoule C, Bouvard MP. Impact of time on task on ADHD patient’s performances in a virtual classroom. Eur J Paediatr Neurol. 2012;16:514–521

Light therapy and its influence on ADHD: An interview

 

Nina (27 years, Dutch) participated in the PROUD-study and followed our light therapy. In this interview she describes the influences light therapy had on her ADHD symptoms.

What is it like to live with ADHD?

Please describe your main symptoms.

The symptom I experience as the most troublesome is making new friends. It is harder for me to make new friends, knowing I have fewer emotional and cognitive skills than peers. I am more sensitive to persons and situations and I experience them as more severe.

Besides, it is harder for me to see things in perspective and my perspectives change a lot over short periods of time. This makes it harder to look further in the future when making decisions. I also have less patience and it is harder for me to concentrate on a task. 

How does ADHD influence your life?

As I explained in the question before it can be tough to make friends. Concerning work, my ADHD has positive and negative effects. The negative effects are my lack of concentration, sometimes a job has to be done at a certain moment when I have no concentration, which can be a real struggle. The positive side is that I am creative and my spatial development is good. These are qualities that come handy at my job. Also my intelligence helps me. Because I am smart I can work fast at the moments my concentration is good, in order to compensate for the moments where my concentration is lost.

Do you think ADHD has any positive influences in your life?

It sure has, but these influences often last for a short period of time. I can be really enthusiastic and I am good at identifying people. This quality makes me a really good friend. Also my creativity is a positive effect of ADHD.

How have you been treated (medication/ psychotherapy)? What are the effects?

For a year and a half I have lived internally in a group especially for adolescents with ADHD and/or autism. Here I followed a training to improve my social abilities, how to engage in relationships with others and to be more independent.

From my 16th I take medication. I have switched a lot and tried different kinds of medication. Much of them did not work well for me, I even tried anti-depressants which made me feel sad. I am currently taking Stratera (short acting) and this works well for me. I don’t take it regularly but only at moments where I think I need it.

Study and intervention

How did you learn about the study?

I am regularly searching the internet to learn more about ADHD. This time I was searching information about comorbidity and neurodiversity and this is how I found your website, by chance.

What motivated you to participate?

It is a good thing that more research is done and I find it important to contribute. The more research is being conducted, the better others with ADHD can be helped. It is of great importance of me to be able to be a part in this. As long as we do not contribute to this kind of research, nothing will chance.

What were your expectations about the study before you started?

To be honest I did not have any expectations because I did not want to be affected by them.

What intervention did you participate in? When?

I participated in the bright light therapy from the 18th of October (2018) until the 10th of January (2019).

What did you like about the intervention? What did you dislike about the intervention?

At the beginning it was kind of hard, I found it really hard to be sitting still half an hour in the morning. Normally I rush through the mornings and do not really sit still at all. My solution was to put the lamp at my nightstand and sit in bed for half an hour in the morning, waking up next to the lamp. You can adjust the brightness of the lamp so I started with dimmed light and increased brightness step by step. Important is to sit upright because otherwise there is a chance of falling back to sleep!

In the beginning I had not realized what an impact this therapy has on your daily life, you really need the motivation to sit through, every day. After some time I got adapted to a new rhythm which made it easier to follow the light therapy for 6 times week. Only on Saturdays I skipped the sessions because of the weekend.

Was the intervention helpful?

It definitely has positive influences. The biggest change I have experienced is the adaptation to a more natural day/night rhythm. I was hoping a side effect would be falling asleep faster but unfortunately this was not the case for me.

The first days I experienced some negative side effects, which are explained in the bright light manual. Maybe it would be better if I had not read the manual because I was so focused on the experience of these side effects. What I felt was a really grumpy mood in the mornings. Luckily it only lasted for a few days.

Are you planning on continuing the intervention?

No, I have no plans of buying a lamp myself. Looking back at the intervention I think I would benefit more by participating in the aerobic exercise intervention, because sitting still for half an hour without a clear purpose is tough. Of course I did adapt to a better and more natural day/night rhythm because of the bright light therapy, but I think this could also be accomplished by going to bed at the same time every day.

Was it difficult/easy to use the App?

Definitely not difficult. The researches informed me about the sensor and how it might be inconvenient in the beginning but I only had to get used to it during the nights. The app was really clear and straight-forward, easy to use. I did forget the phone a few times, making me drive back home, but if you wear pants with pockets this should not be a problem.

Would you recommend other people with ADHD to participate in the study? Why?

I would definitely recommend it to people who are interested in this study and are motivated to participate. You really have to do it because you want it, not only because you want to help others.

Any suggestions/ways that the researchers could improve the experience for people in this study?

In my experience the study is set up well. Sometimes something went wrong (system was not installed right so they had to send me a new set, this set came without a wristband, red.) but the researchers handled it well and professionally. The researchers were cooperative and I liked participating in this study.

Lisa Bos, MSC works at Karakter Child and Youth Psychiatry and Radboud UMC (Nijmegen, the Netherlands) where she works as a researcher for the TRACE project and the PROUD-study. Both studies focus on additional treatments for ADHD and a healthy lifestyle which are also her main interests. She finds importance in studying socially relevant topics and improving the quality of care for ADHD patients.