A project led by Dr Alice Montanaro has found that combined neuropsychological-cognitive behavioural therapy (nCBT) for young adults living with FXS benefits them more in their everyday life due to its multi-dimensional approach. 

Meet Alice Montanaro. She is not your ordinary FXS clinical researcher. She works as a cognitive behavioural therapist at the University of Bari Aldo Moro, where her research is based. Alice first stumbled across the term “Fragile X” when she met Lucrezia, a young woman living with Fragile X Syndrome, who made Alice smile and laugh with her unique sense of humour. Thus began Alice’s fascination with researching on how cognitive behavioural therapy can be adapted into a multifaceted approach for young adults living with FXS. 

In delivering CBT to her patients, Alice soon began to realise that the method was desperately needed to take multiple factors into consideration especially in terms of life with FXS. “What I realised was that you cannot improve one area without improving areas that are connected to it. There were no guidelines to develop a CBT system that would combine several aspects of what it means to live with FXS to prepare patients for an independent life,” says Alice. 

Working closely with her patients, their families and carers, Alice put together a version of CBT that combined several strategies, integrating them with cognitive reconstructions and psychoeducation. In doing so, she was able to challenge a long existing stereotype-that people living with intellectual disabilities cannot participate in CBT. “Intellectual disability always represents an exclusion criteria in the clinical trials”, Alice explains. “We have to adapt CBT to suit the ways in which people with intellectual disabilities think. By working with my patients, I have learned that FXS manifests itself in a unique way of thinking and multiple strengths. We dream of a world where everyone is embraced for who they truly are. Everyone deserves the chance to live independently, in a way that respects their personal vision and capacity for independence.”

Alice’s revolutionary nCBT alternative for young adults with FXS combines neuropsychology with behavioural, cognitive and reconstructional training. She also incorporates occupational therapy because she values the happiness and autonomy of her patients. In this multifaceted approach, educators play a vital role. They serve as a bridge between the clinical setting and everyday life, helping to translate therapeutic goals into real-world progress. Educators actively participate in the monthly nCBT sessions, and they maintain ongoing contact with Alice and her team to support them during daily challenges faced by the individuals in their care. “This is a lifelong approach.” she says. “I live my patients’ lives with them. Sometimes, we do fun things like going out and dancing together. This helps me understand what they feel.”