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Mild intellectual disability -- Diagnostic outcome aspects

In this edition of the Researcher’s Corner we meet psychologist Ida Lindblad, who in December of 2013 put forward her dissertation “Mild intellectual disability - Diagnostic outcome aspects”.

I would like to start by asking you about how your dissertation came about and what influenced your choice of research questions?

- In my clinical work as a psychologist within school health services I encounter children with various difficulties. In this context I would meet children attending special school (with mild intellectual disability (ID)), who often displayed additional difficulties than “just” those associated with the ID. In many of these cases one had settled for an ID diagnosis without further assessing the possible comorbid difficulties. When assessing children with difficulties I would also encounter children with ADHD, another group with major difficulties with adaptive functions. This raised questions about the adaptive functions in children with ADHD compared with children with ID. In my clinical work I met Professor and Chief Physician Elisabeth Fernell, who had similar thoughts.
- In the initial stages of my PhD studies I came in contact with Dr Börje Bager (Senior Consultant within the field of child habilitation), who had conducted a study on mothers with mild ID. This raised further questions about how individuals with mild ID cope with parenthood and, more importantly, how their children experience growing up with a parent with mild ID.

The dissertation consists of four articles. Would you like to describe the purpose of your first study? What did you set out to study and what where the main results of this study?

- I wanted to examine and describe the whole range of ESSENCE-related problems, with a special focus on ADHD, in children with mild ID. I also wanted to estimate the prevalence of mild ID in schoolchildren in Sweden.
- Children with mild ID often have coexisting neurodevelopmental/neuropsychiatric disorders, i.e. ESSENCE-associated problems. We were able to show that 55-80% had considerable difficulties within the entire ESSENCE field, for instance deficits in motor, attention, language, social and emotional functioning. About 50 % of the children displayed indications of pronounced executive problems/ADHD. The prevalence of mild ID in the studied population was 0.85 % (regarded as a minimum prevalence since not all children with mild ID attend special school or have been assessed yet).

What was the focus and findings of your second study?

- In the second study the aim was to compare the adaptive functioning, i.e. functioning in everyday life, in children with mild ID with that of children with ADHD. The reason behind this aim was twofold. Firstly, children with ADHD have been described as functioning at a considerably lower age level (about 25-30%) compared to their chronological age. Secondly, the adaptive functioning constitutes an important part of the diagnostic process and is low in children with mild ID. There is hence a potential risk when assessing children with suspected mild ID, to interpret low adaptive functioning as unequivocal support for the diagnosis of mild ID, in cases where the child’s main problem is ADHD.

- Both groups proved to have low adaptive functions and the group with ADHD had lower adaptive functions than the group with mild ID. When comparing adaptive functions across children with mild ID and children with ADHD without ID, those with ADHD had even lower adaptive functions than individuals with mild ID. This was especially clear for those above the age of twelve years. We also found that boys with ADHD had significantly lower results than girls with ADHD, but we found no gender-based differences in the group with mild ID.

Study 3 and 4 focus on the childhood, upbringing and current life situation of young adults born to mothers with ID. Could you tell us about the aims and findings of these two studies?

- The aim was to gather information about the experiences of children – now young adults – of mothers with ID: how they describe their childhood, upbringing and current life situation. In total the group included 42 individuals, now young adults, of mothers with ID.
- The group of young adults born to mothers with ID was difficult to reach. Fewer than half of the targeted group was possible to make contact with at all (45 %). While we suspected that this group could be difficult to reach, we were not anticipating this level of difficulty. For this reason we chose to carry out a register study, including the group that could not be reached for the interview study. The interview study, which included ten individuals, showed that a large portion had not been primarily raised by their biological mother, more than half reported abuse and/or neglect, almost half reported that they had had no support and no person of importance during their childhood and only one reported having had an unproblematic childhood.
- Taken together, the interview study and the register study revealed that 7 % had died before the age of seven years (the causes of death were prematurity, severe heart malformation and cerebral tumour, respectively) (to compare with 0.7 % in the general population). Furthermore, just over 1/3 of the studied population had mild ID and almost 1/3 had ADHD. More than half were not primarily raised by their biological mother and 1/6 had been sexually abused. Of the individuals in the register study 1/5 were registered within the Prison and Probation Service (PPS) due to various types of crimes. All of these individuals had diagnoses of ADHD and drug abuse.

What would you say are the most important overall findings of your dissertation?

- Children with mild ID often have coexisting ESSENCE-related problems. For this reason they need assessment that includes other areas of functioning than just the general cognitive/intellectual ability. Furthermore, children with mild ID are in need of follow-up and support throughout the lifespan – not just during the school-age years.
- The results indicate that the level of adaptive functioning cannot be used to differentiate between mild ID and ADHD and that those children with the combination of mild ID and ADHD need special attention and intervention.
- Another important finding is that children of mothers with mild ID are exposed to “double hazards” – i.e. constitute a vulnerable group. Hereditary factors put them at greater risk of mild ID and other ESSENCE-related problems, and they are also at increased risk of being socially disadvantaged. Establishing a national consensus and developing guidelines for the provision of support to these families and the children must be made a priority.

How can the knowledge produced by your dissertation be used in practice?

- Assessment of children, with suspected mild ID, must be conducted from an ESSENCE-perspective that takes into account other areas of functioning than merely the general cognitive/intellectual ability. This will allow pedagogical and other interventions to be better tailored to the individual both during the school years and throughout the lifespan. Follow-up is necessary to allow support to be properly adapted throughout the lifespan.
- As the level of adaptive functioning does not seem to work to differentiate between mild ID and ADHD, this is important to take into account clinically in assessment and diagnostic work-ups.
- Children with ADHD should be given special attention with regard to the need for support and planning of interventions. Today these children have no legislative right to support in or outside school in the way that for example children with mild ID do. This is anomalous given their low adaptive functioning and it is an important issue for the school system as well as LSS and habilitation services.

In light of your research findings, what kind of research would you like to see in the future?

- It is important to follow up on the reasons behind the adaptive functions being lower in children with ADHD compared with children with mild ID. Could there be a correlation between children with mild ID having received training of adaptive functions in, for instance, special school, that could have resulted in their adaptive functions not being as low as in children with ADHD? This should be followed-up by looking at the effects of the school reform on special schooling. According to the reform of 2011, schools, including special schools, should focus more on knowledge and less on adaptive training. How will this reform alter the difference in adaptive functions between children with mild ID and children with ADHD? Furthermore, studies examining the effects of pharmacological treatment in children with ADHD on the adaptive functions should be conducted.

- It is important to continue to focus on the situation for children of parents with mild ID when evaluating parent training programs and other interventions. Research so far has been focused on measuring the outcome from a parent perspective, without focusing on how the training affects the children. Continuing to shed light on these issues focusing on the children’s living conditions is important as research in this field remains sparse.

What research questions and areas would you like to work with next?

- Clinical relevance is important to me and this criterion will continue to guide my research. I would like to do a follow-up of the children with ADHD in the study on adaptive functions, to examine whether pharmacological treatment has affected their adaptive functions. Research within the ESSENCE field is important and interesting for further research, for example children with borderline intellectual functioning (BIF) where research is lacking. Research related to school or conducted in the school environment is another area of interest to me.

By Nanna Gillberg




Page Manager: Anna Spyrou|Last update: 1/15/2014

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