Children and young people with a neurodevelopmental condition caused by an alcohol-exposed pregnancy often have to wait years for a diagnosis, according to a new survey by Adoption UK. 

The study of 512 parents and carers found that almost two-thirds (64%) of families in the UK and Ireland where concerns were raised that a child may have Fetal Alcohol Spectrum Disorder (FASD) can face waiting times of up to two years for a diagnosis – and in some cases significantly longer. 

Without a diagnosis, families are often unable to access the specialist support they need, and Adoption UK is warning that the current NHS crisis could mean hundreds of families might have to wait even longer for help. 

Around 3%-5% of babies born in the UK each year have FASD, making it the most common neurodevelopmental condition in the country. The impacts of FASD on an individual can include impulsivity, impeded social skills, developmental dysmaturity and memory difficulties. However, with the right interventions and support individuals can experience positive outcomes – which is why it’s crucial that diagnosis happens as early as possible. 

In addition to lengthy waiting times, our survey revealed that many parents felt that medical staff were often unequipped or undertrained with regards to FASD. Two-thirds of those who responded to the survey told us they were more informed about the condition than health professionals, while just half received a follow-up report highlighting available support after their child was diagnosed.  

The findings also showed that over 80% of parents and carers experienced barriers to diagnosis – including 70% whose diagnosis depended on a report confirming prenatal alcohol exposure for their child, something that many families struggle to access. More than eight in 10 (84%) felt they had not been given any information to help them as parents/carers through the assessment process. 

Adoption UK is now calling for national FASD services to be established in every UK nation to ensure families seeking a diagnosis have access to expert support at every stage of their journey. The charity also wants to see improved training for health professionals and better recording of pre-natal alcohol exposure in order to speed up the diagnosis procedure.  

Barbara Ogston leads Adoption UK’s ground-breaking FASD Hub in Scotland, and has seen first-hand how important a diagnosis is to the families they support. 

She said: “FASD is the most common neurodevelopmental condition in the UK, affecting up to 5% of the population, yet there remains a lack of service provision and unnecessary challenges in accessing a diagnosis.  

“Our survey reveals that not only are barriers to a timely diagnosis commonplace, but that throughout the UK there is still a need for greater support for individuals with FASD and their families throughout their lives. The current crisis within the NHS comes at a time when families are still experiencing lengthy waiting lists post-Covid, and children, young people and adults are being left without the access to assessment and diagnosis that allow them to access the support they desperately need.” 

Read more about the report here