Prescriptions for Antipsychotics: Youth with Intellectual/Developmental Disabilities Compared to Youth without Intellectual/Developmental Disabilities.
European caregivers say youth with rare IDD fall off a healthcare cliff because no one plans, teaches independence, or coordinates teams.
01Research in Context
What this study did
Thom-Jones et al. (2025) asked caregivers across Europe about healthcare transition for youth with rare intellectual or developmental disabilities.
They used a survey to map what is missing when these teens move from child to adult services.
What they found
Caregivers said three big gaps stand out: no clear plan for adult services, little help building independence, and poor teamwork among doctors and therapists.
How this fits with other research
Ooms et al. (2026) asked Dutch doctors the same question and heard the same problems, so the trouble is not just the parents’ view.
Hamama et al. (2021) ran a similar survey in the United States with youth who have autism; again, best-practice transition steps were skipped.
Gauthier-Boudreault et al. (2017) first showed these gaps for profound ID in a small interview study; Sandra’s larger survey proves the pattern holds across Europe.
Why it matters
You now know the transition cliff is real on two continents and across diagnoses. Start a written transition plan before age 16, invite adult providers to the IEP meeting, and add independence goals to the behavior plan. These steps patch the exact holes caregivers keep reporting.
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02At a glance
03Original abstract
BACKGROUND: For young people with rare conditions associated with intellectual disability, the transfer from paediatric to adult healthcare providers is often complicated. European Reference Network ERN-ITHACA (Intellectual disability, TeleHealth, Autism and Congenital Anomalies) on Rare Congenital Malformations and Rare Intellectual Disability aims to develop a clinical practice guideline to improve this transition. The aim of this study was to identify which aspects of the transition to adult care matter most and to describe the current care gap as experienced by European caregivers to inform the guideline scope. METHODS: An international web-based survey was conducted by ERN-ITHACA in January-February 2023. Priorities for a good transition process and current care gaps in Europe were identified using the 'Mind the Gap' scale. The surveys were created in plain and easy-to-read language and available in nine European languages. RESULTS: One hundred fifty-seven caregivers from 15 European countries completed the survey, representing over 40 conditions, including the Phelan-McDermid, Rubinstein-Taybi, 22q11.2 deletion and Kleefstra syndromes. Care gaps were identified, particularly related to process issues such as the preparation for and adaptation to adult healthcare, supporting independence and planning for the future. Items considered essential for optimal healthcare were related to individualised approaches, information provision and coordination of care. DISCUSSION: Coordinated, specialised, individualised and multidisciplinary care is required to support youth with rare conditions and intellectual disability in the transitional age. Supporting young people's independence, orchestrating multidisciplinary care and ensuring effective communication are particularly challenging in the transition to adult healthcare for this population.
Journal of autism and developmental disorders, 2025 · doi:10.1111/jar.12286