A study by the Social Observatory of the “la Caixa” Foundation indicates that children with neurodevelopmental disorders (NDDs) present higher levels of emotional distress, which can be expressed through symptoms of anxiety, depression, or aggressive behaviors, and that it may also have a significant impact on their families.
The investigation, titled Emotional well-being in children with neurodevelopmental disorders and their families, adds that when more than two neurodevelopmental disorders accumulate, difficulties in attention and social relationships intensify.
The work has been carried out by researchers Mari Aguilera, from the University of Barcelona, and Nadia Ahufinger, from the Open University of Catalonia, with the collaboration of the Catalan Association of Dyslexia and the Association of Families with Learning Difficulties in Catalonia. The sample includes nearly 300 families from Catalonia with children between 6 and 12 years old, both with and without a diagnosis, in relation to disorders such as DLD, dyslexia, dyscalculia or ADHD.
Mental health and gender
“After the pandemic, different evidence indicated to us that the prevalence and incidence of mental illnesses had increased, and that is why we asked ourselves how this discomfort could be impacting children with neurodevelopmental disorders and their families,” states Aguilera.
The study starts from the analysis of four areas of development, reading, calculation, oral language and attention-behavior, which has made it possible to detect a high comorbidity: almost half of the children with neurodevelopmental disorders present two or more of them.
“This indicates to us that children with learning difficulties and neurodevelopmental disorders have a complex reality, with more than one difficulty, and that the system must take it into account,” emphasizes Nadia Ahufinger. Therefore, it is a set of interacting factors that can amplify discomfort.
The study also highlights gender differences, as girls show a more severe emotional impact, especially when comorbidity exists. In these cases, they present more symptoms of anxiety, depression, and somatization, in addition to norm-transgressing behaviors. The researchers point out that many girls tend to camouflage their difficulties to adapt to social expectations, which can increase their emotional suffering.
The families
Regarding families, the report points to higher levels of depression and difficulties in emotional regulation when they live with children who present two or more neurodevelopmental disorders. Significant emotional overload is also detected.
“The families have not only been informants about their sons and daughters; they have also been protagonists of the study. Many explained to us that no one had ever asked them how they felt emotionally,” Ahufinger emphasizes.
The participation profile reflects that 88% of the people interviewed are mothers, which shows the main weight of caregiving. Families also express difficulties in managing emotions and a feeling of lack of support.
The investigation concludes that it is necessary to rethink interventions, also incorporating families into care processes, since the emotional impact is shared and sustained over time.
“Until she knew that what was happening to her had a name, my daughter suffered a lot”
Ivana, one of the mothers who participated in the study, is an example of this situation. She is the mother of a teenager with dyslexia, who was not diagnosed until 2nd grade. Years later, she was also diagnosed with language disorder and dyscalculia.
These disorders have different repercussions in their daily life: “Academically, he has many difficulties, especially with languages, spelling, and history, and socially it also affects him and he often prefers to make himself invisible for fear of being judged,” states Ivana.
In their case, once the diagnosis was obtained, they were able to face it through re-education, although he acknowledges that "not all families can afford it and this is also a comparative grievance".
Before the diagnosis, the suffering was constant: “They are creatures with very low self-esteem, who question why they cannot be like the rest. Until she knew that what was happening to her had a name, my daughter suffered a lot”.
Furthermore, families point out feeling abandoned: “You, as a father or as a mother, if you don't know anything about these disorders, you also don't know how to support them. Families need tools and emotional support to be able to support them as they need.”
On this line, the study by the Social Observatory of the “la Caixa” Foundation emphasizes the need to rethink interventions, as the data clearly show that these children are suffering, “but we also have to incorporate families into the treatments because, without that support, the emotional burden is unsustainable”.