What Families Tell Us Part 1 - Transitions from Child to Adult Services

Introduction: The Stories Behind Better Care

Families who support autistic young people and those with learning disabilities often have profound experiences moving through our healthcare system. What becomes clear is that children's services excel in many areas, but the transition to adult care reveals significant gaps. Rather than offering abstract analysis, this blog series will share real family experiences, anonymised and told with sensitivity, that illuminate what works, what doesn't, and what we can all learn.

Today we begin this series with insights from a family whose journey through diagnosis and hospitalisation teaches us essential lessons about communication, continuity, and compassionate care.

The Long Road to Diagnosis: When Five Years Changes Everything

One of the most striking themes in this family's story is the five-year delay in autism diagnosis. The young person was eventually diagnosed at 11 years old, but the path could have been so different. If diagnosis had been missed just a few years longer, this individual would have fallen through a critical window, missing support during formative years and potentially facing the adult system unprepared.

This experience speaks to a broader issue in our healthcare system. Children's services typically have stronger screening protocols and specialist involvement. Yet delays still happen, with consequences that ripple through education, mental health, and family dynamics. For this family, the eventual diagnosis brought clarity and, finally, access to appropriate support. But those five years raise a vital question: How many young people are we missing?​

What strikes us most is this family's resilience. They persisted in seeking answers. Not all families have the knowledge, time, or confidence to advocate as effectively.

Admission to Adult Wards: Sensory Chaos and the Absence of Routine

When this young person was admitted to an adult hospital ward, the contrast with their previous experiences became starkly apparent. Here, we see where adult services, despite the best intentions of hardworking staff, often fall short.

The Sensory Overload: On the ward in a bay of 8 patients, another patient was in their final days of life. During end-of-life care, patients may experience significant distress, agitation, or vocalisations as they near death. For an autistic person or someone with learning disabilities, sensory sensitivity can make this environment uniquely overwhelming. The sounds, the emotional atmosphere, the unpredictability, all converge to create genuine suffering for patients who cannot escape it. When asked about the experience the response was "I cried daily as the sensory overload in hearing the other patient dying was too much."

Children's wards often have quieter environments, fewer emergency situations visible to other patients, and more predictability. Adult wards, by necessity, are busier and more complex. Yet this does not mean we cannot do better.

Lack of Routine and Consistency: The ward had different nursing and medical staff each day, with no consistent point of contact and minimal continuity of care. For any patient this can be unsettling; for autistic people and those with learning disabilities, it can be deeply distressing. Predictability and routine are not luxuries, they are clinical necessities that reduce anxiety and enable better compliance with treatment.

Moreover, there was no clear daily schedule that was communicated, explained, or adhered to. This family was not alone in noting this; it is a theme we hear repeatedly.

The Absence of Explanation: Why Communication Matters Clinically

As a clinician early morning bloods can be extremely helpful as by the 8am ward round we can have vital information that helps the consultant make key decisions to help improve patients outcomes. In our young persons case there was a communication gap as the rationale for the early morning blood tests at 6 AM was not explained and was documented as "patient refused".

From a clinical perspective, explaining procedures is not just courteous, it is protective. When a person with autism or learning disabilities is woken without warning and a procedure is performed without context, their system goes into fight-or-flight mode. They cannot understand why this is happening, and from their nervous system's perspective, it may feel like an attack.

Compare this to an alternative approach: "We need to check your bloods this morning to see if the fluids we gave you yesterday are working properly. That's why we're taking blood from your arm. It will take about five minutes, and then we'll get you back to bed." Suddenly, the same procedure becomes a shared, understood experience rather than an assault on autonomy and after this explanation they consented for bloods and there was no harm in this case due to delay in bloods being taken but this may not be the reality of many around the country.

The family noted that these explanations were often absent. Staff were busy, this is not about blame, but the cumulative effect is that the young person felt unheard, anxious, and disconnected from their own care.

Being Heard: The Cost of Not Listening

Perhaps most poignantly, this family's overarching experience was feeling unheard throughout their hospital stay.

In children's services, staff are typically trained more extensively in neurodiversity and communication difficulties. They ask questions like: "How does this person communicate? What do they need to feel safe? What matters to them?" In busy adult wards, this questioning sometimes does not happen with the same consistency.

When a patient or family member raises concerns, about noise levels, about the need for routine, about feeling anxious, these concerns need to be treated as clinical data, not as preferences to be accommodated if convenient. They are signs of distress that affect healing.

What This Teaches Us: Building Better Adult Services

This family's experience is not unique, and it should not be inevitable. Several principles emerge:

• Transitions matter: The move from child to adult services is a vulnerability point. Better handover protocols, continuity planning, and explicit communication about how adult services work could smooth this transition.

• Communication is clinical: Explaining procedures, sharing information about routine, and maintaining consistency of staff are not luxuries. They are evidence-based interventions that improve outcomes.

• Environment affects everyone: The sensory environment of a ward, noise levels, visual stimulation, the presence of distress, is a clinical consideration for autistic patients and those with learning disabilities, not an afterthought.

• Families are partners: When families raise concerns, listen carefully. They know their loved one better than anyone, and their observations are invaluable.

  
  

Closing Reflection

Children's services have lessons to teach adult services, and adult services are learning. But change requires visibility and conversation. By sharing these stories, with anonymity and sensitivity, we hope to highlight what good care looks like, and where we can improve.

At Dr MJ's Harmony Haven, we are building on these lessons. We are designing care that maintains continuity, that communicates clearly, that respects sensory needs, and that listens to what families tell us. Because better care is not complicated. It starts with seeing each person fully and responding with skill and compassion.

#SupportedbySkillSurroundedbyHeart