Drawn picture of a crowd walking with the person in front being the only person in focus

'Diagnosis of a mild intellectual disability describes a lot but explains nothing'

27 March 2025 Research news item

You probably know someone with mild intellectual disability (MID), even if you don't recognise it right away. In the Netherlands alone, over a million people are diagnosed as such, requiring personal care to help them engage more fully in society. This is why researcher Daan Hulsmans focused his PhD thesis on personalising research and care for this group. How? By utilising a diary app.

Lower intelligence and difficulty with practical, social and communication skills are roughly the conditions by which mental health services assess whether someone has a mild intellectual disability. At first glance, this sounds straightforward. 'And yet I don't know at all what kind of behaviour to expect when someone with a MID diagnosis walks into the room,' begins Hulsmans, also a researcher at care institution Pluryn. Some are eloquent and polite; others struggle to express themselves and suddenly get angry, while others struggle to communicate and may suddenly erupt in anger. Some tend to be very reserved and anxious, and a few may find themselves caught in addiction. Then, some individuals cope by resorting to self-harm. Each person's struggle is distinct, reflecting various emotions and behaviours. Why should we help these people based on general tests and standard treatments? The truth is, we know very little about the specific issues and requirements of those diagnosed with MID. It's time we shift our focus toward more personalised research and care to truly address their needs.

"Not so savvy...?" Don't jump to conclusions

The initial step involves constantly evaluating the situation on an individual basis. In research and treatment, we should focus on describing the problematic behaviour rather than viewing the MID diagnosis as the sole explanation. 'We frequently jump to conclusions too hastily in a field where much remains unclear,' Hulsmans points out. This rush to judgment can lead to a negative self-image regarding the MID diagnosis; for instance, those affected may be labelled as 'not so savvy,' which frustrates Hulsmans. 'We miss this group's nuances and complexities if we don't personalise their care'. Pluryn created the "Take It Personal!" treatment programme, which Hulsmans examined for effectiveness. This treatment explicitly targets alcohol and drug issues within this particular group.

This method provides us a clearer picture of when specific behaviours tend to spike of each individual. That insight is crucial for making this care more personal

Personalisation: how do you do it?

You can imagine it like a cardiologist reviewing a patient's pacemaker data. The cardiologist can see the moments when the pacemaker had to work overtime and connect these instances to the patient's behaviour. This is similar to how the diary app functions: clients log their feelings daily, note any setbacks, and record their daily activities. Each week, they discuss these entries with their counsellor. 'This approach doesn't pinpoint one overarching cause for everything, but it does provide a clearer picture of when specific behaviours tend to spike for each individual. That insight is crucial for making this care more personal,' explains Hulsmans. The app's questions are carefully crafted with input from practitioners and clients to ensure they are helpful and engaging for everyone involved.

Self-insight

How does this process work? Hulsmans shares an example from his doctoral research involving a client who faced significant emotional challenges and exhibited self-harming and aggressive behaviours. 'Each week, she would discuss with her therapist the entries she made in the diary app. This alone boosted her self-awareness. As researchers, we could analyse the data collected from the app to identify which situations and patterns influenced her daily behaviour. For instance, when her freedom was restricted, there was a greater chance she would engage in problematic behaviour the following day, whereas attending a therapy session decreased that likelihood. This was new information for her counsellors', explains Hulsmans. You can only draw such conclusions when you have comprehensive daily data, something a diary app can provide.

MID? It's just a name, not an explanation

Hulsmans' doctoral research reveals that tailored research and care for individuals with mild developmental disabilities are both possible and paramount. 'Those labelled with MID exhibit a wide range of challenges and requirements. Therefore, while a MID diagnosis can encompass much, it ultimately fails to clarify anything specific. However, we can genuinely assist these individuals,' Hulsmans concludes. This, once again, reinforces the notion that the average person does not exist.

Check out the video on 'Take it Personal' (in Dutch)

Literature reference

Studying change in young people with a mild intellectual disability

Contact information

Contact: Dr D.H.G. Hulsmans (Daan)
Organizational unit: Behavioural Science Institute, Faculty of Social Sciences
About person: Dr D.H.G. Hulsmans (Daan)
Theme: Behaviour, Health & Healthcare