Mother Advocates for National Autism Screening for Premature Infants

The mother of a child diagnosed with autism and ADHD after a nearly five-year delay is advocating for a nationwide screening initiative for all prematurely born children. Born in 2016, Freddie arrived at slightly over 29 weeks’ gestation, weighing under 4lb, and required six weeks of intensive care. Studies indicate that premature birth is associated with an elevated risk of developmental issues and disorders. Nevertheless, Rosea Poynter, Freddie’s mother, stated that following his discharge from early years support, he experienced a prolonged wait before receiving his diagnosis in July, at the age of eight. She contends that a specific health pathway for children born prematurely, such as Freddie, could facilitate earlier diagnoses of neurodevelopmental conditions. While National Institute for Health and Care Excellence (NICE) guidelines exist for care providers, Mrs. Poynter is urging for their strengthening. Freddie had previously participated in a support program at the local child development centre, from which he was discharged at two and a half years old. Consequently, when he began exhibiting symptoms of ADHD and autism approximately five years ago, Mrs. Poynter and her husband Craig found themselves needing to “go back to the beginning.” Mrs. Poynter commented, “We no longer had access back to that service, despite being told at birth that he would be at higher risk of neurodiversity.” She explained that she had to take her son to a GP for a referral to the appropriate pathway and subsequently waited in that “queue with everybody else.” Mrs. Poynter asserted, “Quite often premature children are having to manage with a whole range of additional conditions that make their lives more challenging. But if we can screen for something that can help to make their lives a little more different, then why wouldn’t we?” Following Freddie’s diagnosis, Mrs. Poynter reported that they now have access to services tailored to his specific requirements. She mentioned that his school is currently in the process of organizing his Education, Health and Care Plan (EHCP), a document designed for children and young people requiring greater assistance than that provided by standard special educational needs support. However, for an extended period, Mrs. Poynter stated that she and her husband felt they were “blind parenting.” A child born prior to 37 weeks’ gestation is classified as premature. The National Institute for Health and Care Excellence (NICE) advises that infants born before 30 weeks’ gestation, who consequently face an elevated risk of developmental issues or disorders, should receive “enhanced developmental support and surveillance by a multidisciplinary team for up to two years.” Additionally, it recommends that all infants born before 28 weeks’ gestation undergo a face-to-face developmental assessment at four years of age. This NICE guidance, however, was issued in 2017, one year after Freddie’s birth. Mrs. Poynter indicates that, had this guidance been effective earlier, Freddie would not have met the criteria for a four-year-old assessment, as he was born after 28 weeks. Samantha Johnson, a professor of child development at the University of Leicester, commented, “We don’t know the exact reasons why pre-term children are at a higher risk, and it’s actually likely to be a multiplicity of causes.” She further noted that it was “very difficult” to forecast at a very early stage which premature children would develop such disorders later in life. She concluded, “So for that reason, the developmental follow-up that very pre-term children are offered at two and four years old up is really important to identify these children who need long-term support.” Earlier in the current year, NHS England established an ADHD taskforce with the objective of enhancing service delivery. An NHS spokesperson stated: “We established the ADHD taskforce earlier this year to understand more about the issues impacting those with ADHD and their families, and how service provision can be better joined up to meet people’s needs today, and in the future, to ensure people, including children and young people, have access to early support.” The spokesperson added, “We have also published new national guidance to help local partners to deliver high-quality autism assessment services for people in their area and manage the 140% increase in referrals over the last four years, while providing enhanced autism training for psychiatrists.”