A Swansea family say they reached “crisis point” after years of struggling without a clear diagnosis for their son, whose behaviour at home was markedly different to the way he presented at school.
Luke, whose name has been changed to protect his identity, is nine and was recently diagnosed with combined‑type ADHD and autism. His parents say the diagnosis and the post‑assessment support that followed has “completely changed their life” after what they describe as years of uncertainty and exhaustion.
Luke’s parents, Tobias and Marc, adopted him at 18 months. From an early age they noticed behaviours they did not know how to explain, but say they were repeatedly told these were likely connected to attachment or early‑life trauma.
At school, Luke engaged in what his parents now know was “masking” – working hard to hide his difficulties, follow expectations and blend in with his peers.
But at home, they say the emotional strain of masking throughout the school day would often become evident, with the pressure he had been holding in surfacing more visibly.
“By the end of the school day Luke was incredibly overwhelmed,” Tobias said. “He could hold everything together at school, but the moment he got in the car the pressure came out all at once.”
What began as occasional meltdowns gradually became more frequent and more volatile. Despite asking for help, the family felt they weren’t being listened to.
“We tried so many different strategies, different parenting styles and nothing made a difference. We knew something wasn’t right, but without a diagnosis nobody could offer us practical help.”
The family were placed on the NHS waiting list for assessment but say the three‑year wait was too long for them to manage.
“We were struggling. We weren’t sleeping, and Luke’s frustration was being taken out on us and our five‑year‑old son. It became an unsafe environment for us to live in, and we just didn’t know which way to turn.”
After reaching crisis point, the family sought a private assessment through Neuropathways, part of Health is One. Within two weeks, Luke had a full diagnostic report confirming both ADHD and autism.
“It was a huge relief,” his dad said. “For the first time we had an explanation for why things were so difficult for Luke.”
Importantly, the support continued after the diagnosis. Neuropathways’ psychologist arranged a multi‑agency meeting with Luke’s school, bringing together the headteacher, class teacher and the school’s emotional literacy support assistant.
The meeting helped both home and school understand that they were seeing different parts of the same picture.
Emma Davies, Director at Neuropathways (part of Health is One), said: “Masking meant Luke’s school saw a very capable and compliant child, while at home his parents were dealing with the impact of him holding everything in all day. That contrast is something many families experience, and it can be incredibly difficult without a shared understanding of what the child is coping with.”
Together, the family, school and clinician created a Transition Home Strategy – a set of realistic adjustments to support Luke at the time of day he found most challenging.
The agreed steps included decompression time, a predictable end‑of‑day routine, daily check‑ins from school, sensory regulation tools and a flexible pick‑up time.
“A needs‑based approach means we focus on what helps a child thrive, not on waiting for a diagnostic label,” added Emma. “With consistent support across home and school, children can feel calmer, more understood and more in control. Early support, followed by post‑diagnostic guidance, ensures we meet a child’s needs as they are right now, rather than relying on systems that may take years to catch up.”
His dads said the changes were “simple but incredibly effective”.
“It helped him come home in a calmer state. Something so small made a huge difference and we started to see a much happier version of Luke.”
Since receiving support, the family say daily life has improved significantly. They describe last Christmas, their first with a diagnosis and treatment plan in place, as “the calmest and most enjoyable we’ve ever had”.
“Before, everything felt unpredictable,” his dad said. “Now we understand him better, and he understands himself better too.”
Luke’s school performance has also improved. His concentration is growing, his confidence is increasing, and he is able to express more clearly how he feels.
“He’s incredibly imaginative,” his dad said. “He says he wants to design the instructions for Lego when he’s older. He can finally think about the future.”
The experience has also inspired them to write a children’s book about masking, The Boy in the Invisible Mask, to help other families recognise the signs they spent years trying to understand.
The family say they now want to speak up for others navigating long waiting lists or unclear support routes.
“We don’t want any other family to feel alone or unheard,” they said. “A diagnosis isn’t the end of the journey; it’s the start of understanding what a child needs. The support afterwards is what really changes things.”
Neuropathways said its post‑diagnosis pathway aims to create shared understanding between families, professionals and schools, ensuring every child receives practical support tailored to their needs.
For Luke’s family, the change has been “life‑changing”.
“We’ve gone from surviving to actually living,” his dad said. “That’s all any family wants.”
