EditorSWANSEA: Parents’ long fight for answers after son’s hidden ADHD and autism battle
Tobias and Marc, who adopted their son Luke at 18 months, said they reached “crisis point” after being placed on a three-year NHS waiting list for an assessment.
They described how their son, now nine, would “mask” his difficulties at school, only to release the emotional strain in volatile meltdowns at home.
“He could hold everything together at school, but the moment he got in the car the pressure came out all at once,” Tobias said.
“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’s struggle comes as Senedd Research reveals an 87% rise in the number of children and young people in Wales waiting for an autism or ADHD assessment, with 45% waiting more than a year.
After reaching breaking 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.”
The support that followed the diagnosis, they say, “completely changed their life.”
Neuropathways’ psychologist arranged a multi-agency meeting with Luke’s school, helping both home and school understand they were seeing different parts of the same picture.
Emma Davies, Director at Neuropathways, explained: “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.”
A “Transition Home Strategy” was created, with simple but effective steps like decompression time, a predictable routine, and sensory regulation tools.
“It helped him come home in a calmer state,” his dads said. “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, describing last Christmas as “the calmest and most enjoyable we’ve ever had”.
Luke’s school performance has also improved, and he is now able to think about his future, saying he wants to design the instructions for Lego when he’s older.
The experience has inspired Tobias and Marc 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.
“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.”
#ADHD #Autism #HealthIsOne #mentalHealth #NeurodevelopmentalServices #NHSWaitingLists #parenting #Swansea
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