Down’s Syndrome Regression Disorder

Andrew Cooper Excerpts

Tuesday 8th July 2025 Westminster Hall

[Andrew Cooper (Mid Cheshire) (Lab)]

It is a pleasure to serve under your chairmanship, Sir Jeremy. I declare an interest as co-chair of the all-party parliamentary group on Down syndrome, along with the right hon. Member for East Hampshire (Damian Hinds).

I congratulate my hon. Friend the Member for Thurrock (Jen Craft) on securing this important and timely debate on Down syndrome regression disorder—a subject on which she always speaks with authority. I thank her for so eloquently explaining the devastating impact it has on families, the difficulties around its diagnosis, and the need for greater awareness and action.

We have already heard that Down syndrome regression disorder is a heartbreaking condition that affects around 1% to 2% of young people with Down syndrome, typically during adolescence and early adulthood. Despite the profound effects it has on many families across the country, it remains largely in the shadows and is widely under-recognised in our healthcare and support systems.

Down syndrome regression disorder is marked by a sudden and often severe loss of previously acquired skills—language, mobility, self-care and social interaction. Imagine a young person who once spoke fluently, dressed themselves and engaged joyfully with others suddenly becoming mute, withdrawn and dependent. For many families, this is not a nightmare: it is their reality. For them, it is like watching their loved one vanish before their eyes.

The emotional and psychological toll on these families is immense. A recent study published in the Orphanet Journal of Rare Diseases found that the caregivers of individuals with DSRD experience significantly higher levels of depression, financial strain and social isolation compared with the caregivers of individuals with other neurological conditions. Many parents described the experience as traumatic, grieving the loss of the child they once knew while navigating a healthcare system that often lacks answers. That is because in the UK awareness of DSRD is limited.

We have excellent support networks for individuals with Down syndrome, but DSRD falls into a blind spot. There are no standard diagnostic criteria in current NHS guidelines, research funding is scarce, and few clinicians are trained to recognise or treat the disorder. The referral pathways are often unclear, leaving families in limbo during what may be the most frightening period of their lives.

We must recognise that this is not just a medical issue; it is a human one too. One of the greatest challenges with DSRD is the difficulty in diagnosing it. For many parents, their first concern is dismissal by medical professionals. When a young person with Down syndrome begins to show signs of regression, the common response is often that it is simply part of their developmental journey—a phase that will pass. Concerns are too often brushed aside, leaving families feeling unheard and helpless. This dismissive attitude can delay proper diagnosis and treatment, worsening the young person’s condition.

Medical professionals, although experts in their field, may not be aware of this specific disorder and, as a result, may not recognise the signs when they appear. For parents who already face the complexities of raising a young person with Down syndrome, having their worries minimised is an additional burden. Their instinct is to protect and advocate for their child, yet they find themselves in a constant struggle for acknowledgment.

But there is hope, if we act. We need more research in the UK that investigates how this disorder presents in our healthcare and social environments. We must also push for clinical trials in the UK, because similar trials in other countries, particularly the US, have shown that with the right interventions it is possible to help children with this condition to return to their baseline level of functioning.

We need clear diagnostic and treatment pathways to be developed by the NHS and the National Institute for Health and Care Excellence, in collaboration with experts in Down syndrome. Doctors and mental health professionals must be trained to identify the early signs of regression and respond with urgency and compassion.

We must listen to parents. When they voice concerns, we need to take them seriously. They are experts on their children, and dismissing their worries can delay crucial intervention. Families deserve real support, not dismissal. They need practical guidance, better access to care and peer networks that they can turn to during moments of crisis.

The public need to hear more about this condition, because the more we talk about it, the closer we get to funding solutions and saving futures. Every person with Down syndrome deserves the chance to thrive without fear of losing the progress they have made, and every family deserves to be believed, supported and empowered when regression strikes. Let us give Down syndrome regression disorder the attention it desperately needs before more voices are silenced, more smiles fade and more potential is lost.