"We know that addiction is complex [...] It’s important to try to be as holistic and inclusive as possible, in research as well as in practice."
Dr Raffaella Margherita Milani is a BPS Chartered Psychologist and course leader for addiction studies at the University of East London. She recently completed a research project titled ‘Understanding Neurodiversity in Substance Use Services: From Insight to Action’. The study was funded by the Sir Halley Stewart Trust and was conducted at two Cranstoun drug and alcohol services, one in Sutton and the other Windsor, Maidenhead. She spoke to Performing Recovery about the intersection of addiction and neurodiversity, and the benefits of arts-based approaches in service settings.
This interview was conducted in January 2022, and was originally printed in Performing Recovery Issue 13.
Alex: What’s your main area of study?
Marghe: My background is psychology. I’m a senior lecturer at the University of East London, and my area of expertise is addiction and mental health.
I’ve been working in this field for over 20 years. Previously, I was at the University of West London, where I served as a course leader and module leader for a range of professional courses in the health and social sectors. We had a wide range of professionals, including police, social workers, midwives and mental health nurses, who came to study addiction from different perspectives. We looked at different treatments, drug effects, awareness and harm reduction.
My research in the last 10 years has focused mainly on the intersection between substance use and addiction, mental health and multiple needs, and my most recent work focuses on addiction and neurodiversity. I am also working with Cranstoun Drug and Alcohol Services on the development of an AI predictive tool to assist clinicians in identifying risks of overdose.
We know that addiction is complex, it doesn’t happen in a vacuum, and it’s never in isolation. As complex human beings, it’s important to try to be as holistic and inclusive as possible, in research as well as in practice.
Together with mental health, neurodiversity and addiction, I’ve also been doing projects around social determinants of addiction, and how factors like ethnicity, social status, and financial status and disadvantage affect the way people access treatment, as well as treatment outcomes. We’re looking at the broader ideas of inclusion and social justice, and at the intersections among different dimensions.
Alex: I’ve been in addiction recovery for 17 years, and I’ve recently been diagnosed with both ADHD and autism spectrum disorder (ASD). In my experience, there seems to be a lot of crossovers between people who are in addiction recovery and who identify as neurodivergent. Is this accurate, and why do you think this is?
Marghe: There was a meta-analysis published in 2023 that looked at all the research into the overlap between ADHD and substance use, and they found that 20–25% of people in treatment for alcohol or drug dependence met the criteria of ADHD. So, it’s three to five times higher than the prevalence in the general adult population. They found that having ADHD is linked to the early onset of substance use, so people who have ADHD tend to start earlier. They are more at risk of developing severe dependence and psychiatric comorbidity, and there’s lower treatment retention and higher relapse risk.
So yes, ADHD comes with a number of challenges.
There’s less research around ASD linked to substance use, and there may be an under-identification of ASD within this population, although we know that there is an overlap between the two conditions. That’s why the research that we just completed included screening for both ADHD and ASD. Why is there this overlap? Again, there isn’t only one explanation – we know that it’s complex. We need to look at biological, social and psychological factors.
From a biological point of view, we know that both addiction and ADHD, for example, are linked to the regulation of dopamine. So, in both cases, there’s a downregulation or dysregulation of the dopamine reward system. The dopamine reward system involves the frontal lobe, which is the part of the brain that deals with impulse regulation. It also regulates executive function, which is the ability to hold information in your mind and use it to plan and make decisions. Any stimulus that is recognised as a reward (this could be food, sex or drugs) activates the ventral tegmental area, which is a region in the midbrain, to release dopamine to the nucleus accumbens. This is also in the middle of the brain and regulates reward processing.
Neuroimaging has shown that individuals with reduced or dysfunctional dopamine transmission often require more stimulation to experience the same dopamine release, or reward, that other people may get from ordinary tasks or pleasant activities. This often leads to difficulties in sustained motivation. This is one
explanation for why people with ADHD tend to move from one activity or interest to another. This is also why they are more likely to get “hooked” on a variety of behaviours. It’s not just substance use; it could also be online activities like gaming or any other kind of activity that releases dopamine.
From a biological perspective, this may explain why someone might have difficulty regulating the intake of substances or any behaviour that requires them to moderate or stop at a certain point. The involvement of the frontal lobe functioning and increased impulsivity lead to difficulties in delaying gratification.
There’s also an element of emotion dysregulation. People with ADHD may have extreme emotions, going from feeling very low to really excited or frustrated. Engaging in some behaviours is a way to regulate these emotions. Playing a lot of games online, watching YouTube or using substances helps a person control emotion dysregulation. Having an instant reward, meaning you instantly feel better in the short term, reinforces this behaviour.
This links to the self-medication hypothesis. In our study, we interviewed 22 people who were in treatment at a drug and alcohol service. They reported that using substances was often an answer to their discomfort. It helped them calm down and cope with anxiety. It slowed down their thoughts and increased focus.
Another issue is trauma. Again, our study confirmed a very high prevalence of trauma among people in general who are in addiction treatment. For those with neurodivergent traits, this is even higher.
It’s a catch-22 situation, because we know that those who experience trauma can develop similar behaviour to the symptoms of ASD and ADHD, for example. Sometimes it’s difficult to diagnose whether the trauma comes from the symptoms or the symptoms come from the trauma.
I don’t think it’s always important to understand what came first. What is important is that we know these two are linked, and that we need to address both at the same time. Trauma might trigger neurodivergent behaviours, but also people for whom these behaviours cause difficulties can also experience trauma.
For example, difficulties in managing social interactions might mean people are more likely to be bullied at school. People with neurodivergent behaviours are also more likely to be the victims of trauma as adults. In our study, we found a very high prevalence of adult trauma in those who had scored higher on ADHD and ASD screenings: 95% of those who screened positive or high for ADHD, and 86% of those positive on ASD screening had experienced trauma as adults.
We should recognise that this information was self-disclosed, so we don’t know the details of individual trauma. For some people, what they experienced might not be strictly classified as trauma. However, what counts is that for those people, whatever the experience, it was traumatic for them – it’s their definition of trauma.
With regard to ASD, the connection to addiction is similar to ADHD but has less to do with dopamine reward. It’s more to do with communication ability, social skills, anxiety and emotion dysregulation.
Alex: What you’ve said really reflects the complexity. I often talk with my therapist about whether my neurodivergence has caused trauma or if some of my neurodivergent behaviours are safety mechanisms in reaction to trauma.
You mentioned high relapse rates. Do you think more traditional addiction treatment models are unable to accommodate neurodivergent people, and if so, where do these models fall short?
Marghe: Neurodivergence, or neurodiversity, has become more prominent in the research narrative and in early treatment, and funding has increased. Addiction services are trying to catch up, but they aren’t necessarily set up to help people with neurodivergence traits yet.
One interesting finding of our study was that staff also wanted to be screened for ADHD and ASD. Many will have lived experience of addiction, so it’s understandable that there may be a high prevalence. Inclusivity isn’t only about making the service more inclusive for clients, but also for staff and volunteers. There’s a need to understand what kinds of adjustments are needed, as well as what awareness and training are needed for people working in this sector.
"Our study confirmed a very high prevalence of trauma among people who are in addiction treatment. For those with neurodivergent traits, this is even higher."
One main issue is the long wait for any kind of diagnosis. Diagnosis is not an answer in itself. In our study in Cranstoun, we didn’t focus on diagnosis; instead, we tested people using standardised screening tools recommended by the NHS. This should be the baseline for identifying individuals’ needs, regardless of a clinical diagnosis, which is more complicated and can take a long time to get. Screening tools can be a useful way to identify those experiencing challenges and indicate which measures should be put in place to support them.
A lot of participants that we interviewed said that they often felt dismissed when they raised the issue of being neurodivergent. They weren’t listened to by their GP, or they were told that they just weren’t. These experiences of being rejected or not listened to are a re-traumatisation and make individuals even more reluctant to ask for help or seek support.
Ultimately, if we make services and organisations more inclusive, assuming that everybody who comes through the door may have some form of neurodivergence, it will be better for everyone.
We’re not talking about doing something too big here. It’s about making communication clearer, increasing flexibility, and offering different treatment and support options. For example, some people may feel uncomfortable attending groups, especially if they have autistic traits. It’s important not to assume that everybody benefits from groups.
We’re considering the idea of a neurodivergence passport that people can carry with them, and be included in service case records, so they don’t need to repeat the same story each time they join a service. This passport could be individualised to specify what helps them, when they may feel overwhelmed, and what they may have difficulty with.
Alex: I like the passport idea. For me, it’s such a new experience to say what I need or ask for accommodations. It’s difficult to talk about these things a lot of the time. I also like that you’re saying it’s not just about diagnosis, it’s about needs. Even for people who might not necessarily see themselves as neurodivergent, it’s nice to be able to say, “I don’t like big groups” or “If there are three or four people talking to me at once, I can’t process that information”.
Marghe: Yes, at different stages in life, we struggle with different things, depending on our situation. We all become neurodiverse at some point in life. I am extremely neurodiverse now that I’m going through pre-menopause, you know. I find that I have a foggy brain, and I struggle to get organised. I forget things and suddenly feel emotional.
Services need a universal system that is inclusive, increases compassion and ensures accessibility, providing a wider range of choices for people. It needs to help individuals to be open about what helps them, what overwhelms them and what can be done to support them.
Alex: When I was first speaking to someone, a medical professional but not a doctor, about the titration for my ADHD medication, I mentioned that I was in recovery for 15 years and wanted to know how addictive the medications would be. What are the risks? The only answer I got was “Well, if you’re concerned, you could lock your medications up and give your partner the key to unlock them each day”. I know they wanted to help, but I felt it was a bad solution to a question I hadn’t even asked.
Marghe: That’s still a bit of a grey area, where more training and a better understanding of how these medications work and how they can be prescribed safely are needed. Medical practitioners are anxious about prescribing medication that might interact with other drugs or reinforce addiction. More training is needed in this area.
I’m not a prescriber, I’m a psychologist. But some research has come out from Prof. Adam Winstock based on what he has seen in his practice, showing people who are using illegal substances often reduce this behaviour after they start taking controlled medications. There’s increasing evidence of this.
It’s always a bit worrying because you think, “Oh, I’m leaving one drug for another”, but for any medication – medication for diabetes, for instance – if it works, it works. If you feel better and more confident, it can help reduce addictive behaviours.
It’s an interesting situation. Sometimes people who have used drugs for many years are then reluctant to take medications for other reasons. Where does this come from? Maybe you can tell me more about this from your perspective?
Alex: When I joined a 12-step programme to stop drinking, I also stopped using any other recreational drugs like amphetamines or ecstasy. I’d been abstinent for 15–16 years when I got my ADHD diagnosis. I wasn’t even expecting to be recommended medication, and so first of all, that was a bit of a shock. Then I looked up the medication they recommended, and it’s so close to methamphetamine. It’s meth! It’s this stuff I used to buy behind an arts centre when I was a teenager. Coming from a 12-step background, my sobriety is all based on just not taking anything, so it felt like I was breaking a rule that had saved my life. Firstly, if I’m taking this medication, am I still sober? Secondly, will I get addicted to this medication?
Marghe: You raise this very important point about 12-step programmes and the abstinence-based approach, and also the fear of becoming addicted to medications.
There’s also a concern when it comes to treating children. More kids are being diagnosed with ADHD or at least reported as showing symptoms. Working in this field highlights the potential risks, which raises understandable questions about how best to support a child. The idea of using prescription medication can feel uncomfortable, especially knowing they involve amphetamines. At the same time, there’s the worry about what might happen if a child tries to manage their symptoms independently. It can be a difficult balance, particularly with the known side effects of these medications, such as changes in appetite and sleep. There needs to be a careful assessment and careful consideration of risks and benefits.
There’s a programme called Dual Diagnosis Anonymous (DDA). It’s basically 12 plus 5 steps. It was developed
in Oregon in the 1990s by Corbett Monica, an army veteran, after he and his friends had been turned away from AA because they had mental health issues. The organisation does amazing work. One of the differences is that they allow people to talk about medications without feeling uncomfortable.
DDA is a broad church. People can go with any kind of addiction – substance and behavioural – as well as mental health concerns and talk about it all.
Alex: That sounds like a great initiative. I take medication now, and it helps in my day-to-day life so much. It’s slow-release medication, so I don’t feel a buzz. It doesn’t feel like speed!
Marghe: Does it affect your sleep, your appetite or other things?
Alex: It’s about getting the balance. I’ve always been a binge eater, and I’ve never had very good sleep, so it’s complicated. But if my day is easier because I’m able to concentrate on my work and regulate my moods, then it reduces tension, it lowers anxiety, so I’m less likely to binge or sleep poorly. But it’s only part of things. I also do therapy and have community arts groups.
Marghe: It would be interesting to do a study on this to understand more about the experience of people who have experienced addiction and are now on medications.
"At different stages in life, we struggle with different things, depending on our situation. We all become neurodivergent at some point."
Alex: Beyond medications, what are the potentials for using creative approaches in recovery environments with people who are neurodivergent?
Marghe: Absolutely, I’m a fan of any creative approaches. I strongly believe that they are very important for everyone, but even more for some people. If we think about ASD, one characteristic is a focused attention on particular activities or incredible talents in specific areas, for example, music. These activities are a healthy way to regulate emotions and express yourself. It also gives a sense of purpose and helps people bond with others who share similar interests, creating a network of support. It’s also a way of having fun!
There needs to be more opportunities and accessibility.
Alex: With neurodivergence and especially ASD, there’s often difficulty with communication or expressing yourself. Peer-support programmes rely a lot on the kind of communication that some neurodivergent people find difficult.
If you’ve spent your lifetime masking, it can become a habit even within 12-step groups because you’re used to expressing or reacting in ways people expect, rather than in ways that reflect your own emotions, feelings or needs. Do you think more creative storytelling approaches can help people in those situations?
Marghe: That’s interesting. Masking, of course, creates a lot of pressure and stress. A person in work, school or social situations might spend a lot of energy just trying to fit in and then might burn out when they’re on their own. It also affects how a person perceives themselves – if you aren’t able to be yourself and can’t accept the way you are, it can impact self-esteem.
Creative spaces allow you to experiment with your identity in different ways and express yourself in ways that you may not be able to in ordinary settings.
Many years ago, I was volunteering in psychiatric units in Padua, while studying Psychology at Padua University, in Italy. There was an organisation doing theatre with psychiatric patients, and this enabled them to act out an identity they wouldn’t be able to in real life.
It also helps with self-esteem and confidence, being able to be good at something that’s not normally valued in other settings, like work or school. There’s so much emphasis on subjects like maths, for example. Why? I mean, there are so many other abilities in life.
Especially for people who are neurodivergent, but also for everyone, being part of a creative group is a space where one can develop as a person. They can become more in tune with their own identity and abilities, increase their self-esteem and bond with other people.
For more information on DDA, visit: https://www.ddauk.org/
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