Children with neurodevelopmental disorders concentrate higher levels of emotional suffering

How does having one or more neurodevelopmental disorders (NDD) affect children emotionally? According to the study Emotional well-being in children with neurodevelopmental disorders and their families, funded by the Social Observatory of the ”la Caixa” Foundation, these children are more likely to experience emotional suffering, which manifests through symptoms of depression and anxiety or aggression. In cases where at least two neurodevelopmental disorders are present, problems in social relationships and attention difficulties are particularly aggravated, an effect that is especially prevalent in girls.

"Following the pandemic, various pieces of evidence pointed to an increase in the prevalence and incidence of mental illnesses, which made us wonder how this distress could be impacting children with neurodevelopmental disorders and their families," said Mari Aguilera, one of the researchers behind the study. This was the main focus of the research, which also addressed an innovative and little-studied aspect: the well-being of not only the children themselves but that of their families.

The study, conducted by two principal investigators, Dr Nadia Ahufinger, from the Universitat Oberta de Catalunya (UOC), and Dr Mari Aguilera, from the University of Barcelona (UB), with the collaboration of the Catalan Association of Dyslexia (ACD) and the Association of Families with Learning Difficulties in Catalonia (AFDACAT), involved nearly three hundred families with children aged between 6 and 12, with or without a diagnosis of neurodevelopmental disorders such as developmental language disorder (DLD), dyslexia, dyscalculia or attention deficit hyperactivity disorder (ADHD).

Comorbidity and gender

One of the study's key contributions is the joint analysis of four areas of development – reading, calculation, oral language and attention-behaviour – which has allowed for the detection of high comorbidity: almost half of the children with neurodevelopmental disorders present two or more of them.

"This indicates to us that the situation for children with learning difficulties and neurodevelopmental disorders presents a high level of complexity, with more than one difficulty, and the system must take this into account," said Nadia Ahufinger, who is a member of the GRECIL Cognition and Language research group at the UOC's eHealth Centre. It therefore constitutes a set of interacting factors that can amplify their distress.

The study also warns of a more severe emotional impact on girls, especially in cases of comorbidity. They present more symptoms of anxiety, depression and somatization, as well as more rule-breaking behaviours. "A lot of girls tend to camouflage their difficulties to adapt to highly demanding social expectations," said Dr Ahufinger. "This sustained effort can end up aggravating their emotional suffering."

Emotional distress also falls on families

The study also incorporates an innovative perspective focused on the emotional well-being of families, a dimension that has been little studied until now. The conclusions indicate that families who have children with two or more neurodevelopmental disorders are those who present higher levels of depression and difficulties in their emotional regulation.

"The families not only provided us with information about their children, but they were also the subjects of our study," said Dr Ahufinger. "Many explained to us that no one had ever asked them how they felt emotionally."

The profile of the participants also reveals a strong gender bias: 88% were mothers, underscoring the emotional and caregiving burden that continues to be mostly assumed by women.

Furthermore, in their interviews the families expressed difficulties in managing their own emotions and significant emotional overload, an aspect highlighted by the researchers. One such example is Ivana, the mother of a teenager with dyslexia who was not diagnosed until the second year of primary school. Years later, she was also diagnosed with developmental language disorder and dyscalculia. These disorders have different impacts on her daily life: "Academically, she has many difficulties, especially with languages, spelling, and history, and it also affects her in the social aspect, as she often prefers to make herself invisible for fear of being judged," said Ivana.

In her case, once they had the diagnosis, they were able to face it with re-education, but she knows that "not all families can afford it and this is also a comparative disadvantage."

Prior to being diagnosed, her suffering was constant: "These are children with very damaged self-esteem, who question why they cannot be like the rest. Until she knew what was happening to her had a name, my daughter suffered terribly."

Furthermore, families feel abandoned: "As a parent, if you don't know anything about these disorders, you don't know what you can do to help either. Families need tools and emotional support to be able to give their children the support they need."

In this regard, the researchers agree on the need to rethink interventions because the data clearly indicate that these children are suffering, "but we also have to incorporate families into the treatments because, without that support, the emotional burden is unsustainable."

Read the full study here.

This research falls under the UOC's Planetary Health and well-being research mission and supports UN Sustainable Development Goal (SDG) 3, Good Health and Well-being.

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