SABAA project and the overlap between autism and addiction: Julia Sinclair talks to the SSA

SABAA is an SSA funded project looking at the overlap between autism and addiction. The project aims to identify research gaps and priorities as well as to provide guidance for future work. The SSA caught up with Professor Julia Sinclair to find out more.

SSA: What do we know currently about autism and addiction?

Professor Sinclair: “We know remarkably little give the potential severity of the problem. There are over 700,000 autistic people* in the UK, a recent systematic review suggested that the rates of substance use among autistic people could be as high as 36%. The challenge that we have is that we know very little about the overlap between autistic people and their mental health and addiction needs.”

And are there common traits between autism and addiction?

“Autistic people often have challenges in communication and interaction with others, with recognising and regulating emotions, and with anxiety. So, you’d perhaps anticipate that they may also have higher levels of substance use in order to help manage that.”

“When we think about behavioural addictions, far less is known. On the one hand autistic people often have restricted and repetitive patterns of behaviour and you could say that that would overlap with some forms of behavioural addictions. However, behavioural addictions are still relatively new in terms of their definitions as disorders. This is particularly true for things like gaming and internet use disorder; they are still quite early on in terms of their evolution. At the moment, very little is known about where that overlaps with some of the behavioural traits of autistic people and particularly about whether it is something to be concerned about or not.”

“The whole thing about an addiction is that it’s ego dystonic it’s something you’re not enjoying doing. Whereas an autistic person might enjoy spending their time on the internet, therefore that wouldn’t necessarily be an addiction and could be something that’s not yet very well understood.”

What first interested you in this area of looking at autism and addiction?

“One of the first things was when I met with Janine [Robinson], so the great advantage of collaboration really. I met with Janine when both of us were new national speciality advisers in our respective specialities for NHS England. Janine for autism and me for alcohol dependence. We had a conversation about how there must be an overlap between autism and addiction, but that nobody knew much about it. That was really that seed that germinated into our wishing to explore this further.”

You then formed SABAA project, can you explain what that stands for what the project plans to do.

“So, SABAA stands for Substance use, Alcohol and Behavioural Addictions in Autism. It’s a priority setting partnership bringing together a full range of experts including people with lived experience in order to really explore what is not known and what is known and to come up with a list of priorities for researchers, clinicians and policy makers for how to move this field forward.”

How will you achieve this?

“A priority setting partnership has a number of steps towards it. First, we’ve set up an international steering group involving people from a wide range of disciplines and people with lived experience. We’ll then review the literature looking for what is known and use this to start to define those gaps where very little has been written.”

“We will then ask for further questions through an online survey on what people think is important in terms of what we don’t know about the overlap between addictions and autism. We’re then going to bring together several groups of stakeholders to explore the nuance of that and really get to understand where those gaps are, and which ones are important to people.”

“From that point on we’re going to then have a Delphi process; so, a consensus group bringing together key people from across the stakeholder groups who will then go through an iterative process to gradually whittle down to ten priorities that everybody feels are really key in terms of taking this field forward.”

“There will also be obviously other priorities that we identify that don’t make the final ten but what we put out there will help the field to define the next steps so that people don’t just go off and continue working in silos. We aim to bring people together so that we can make the most of the shared expertise.”

What other outputs will you have?

“At the end of this we will also produce a toolkit for priority setting in addictions. There are already very well-respected organisations like the James Lind Alliance that do priority setting partnerships for the NIHR and other groups, but those are very clinically focused. This will be more about the wider addictions field, so, including social science, criminal justice and broader policy questions.”

“There’s a far broader range of stakeholders engaged, so we’re hoping that, using this process and being able to offer it as a toolkit, other people in the addictions field, across a range of disciplines may chose to then use that to do something similar in their own area.”

“We hope to achieve all of this over the next 18 months. We’re hoping to link in with dates around world autism day next April, and obviously at the SSA conference in November where we’ll be having one of our stakeholder meetings.”

Which other organisations or people are already involved in SABAA?

“It’s an open and inclusive process, so if people have an interest in autism and where it overlaps with behavioural addictions and alcohol and other substance use disorders, they are very welcome to be part of this. And I’d really encourage everybody to do that.”

“So far in our international steering group I’m really pleased that we have the following:

• Roberta Agabio; from Cagliari in Sardinia who is an expert in systematic reviewing and alcohol use
• Qiana Brown; Assistant Professor in Rutgers University with expertise in substance use disorders and maternal health
• Sam Chamberlain; Professor of Psychiatry at the University of Southampton
• Marica Ferri; the EMCDDA Head of Sector Support to Practice, based in Portugal
• Chelsey Flood is an author and a lecturer in Writing at Falmouth University
• Jon Grant; Professor of Psychiatry and Behavioural Neuroscience, and expert in compulsive behaviours and addictions from the University of Chicago
• Andrew Misell is Director for Wales at Alcohol Change UK
• Janine Robinson; National Speciality Adviser for Autism in NHS England
• Chris Torry, a Community Charge Nurse working in substance use disorders and who is himself an autistic person”

Where should people look for more information about autism or about SABAA?

“For this particular project, information is on the SSA website. Also, if anyone wants to know more information, to be involved or to be on our mailing list, there is the sabaa@soton.ac.uk email address and you can follow us on twitter @pspsabaa”

The SABAA team

Professor Julia Sinclair is a Professor of Addiction Psychiatry and the University of Southampton and co-lead of the SABAA project.

Dr Janine Robinson is a Clinical Psychologist and National Speciality Adviser for Autism for NHS England.

Professor Sam Chamberlain is a Professor of Psychiatry at the University of Southampton and an expert in impulsive and compulsive disorders and behavioural addictions

 

*We have chosen to use identity-first language but understand there is no universally accepted way to describe autism

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