Fighting for attention

Ben Upton
Science Journalist for ACAMH

Posted on

To present a more complete picture of a highly heritable disorder, The Bridge has spoken to two parents of children with ADHD about the challenges and concerns that it can present.

Case Study 1

Gretta Schifano’s 14-year-old son was diagnosed with ADHD in June 2017 after years of struggling at school. She had fought for many years to have him assessed by an educational psychologist, but said that her concerns were dismissed by the school.

“I was quite upset when he got the diagnosis” said Gretta. “To find out what it was and  to think why did nobody ever mention this before or refer him?” she said. “One thing that’s muddied the water a little is that he’s adopted, he came to live with us when he was two.”

“From when he was first adopted I’ve been reading a lot about attachment,” said Gretta. She said she understands the majority of young people seeking adoption in the UK are victims of abuse or neglect, and this led her to believe her son may have had attachment issues.

“The reason he actually got diagnosed was through adoption support” she said, explaining that a local education authority adoption support psychotherapist referred him to Great Ormond Street Hospital, where the trauma team diagnosed him, not with PTSD, but ADHD. “I think things were easier at primary school because it’s more nurturing and they’re a bit more forgiving” said Gretta “but when you get to secondary school and you have to remember your green pen for maths and tuck your shirt in he finds it really hard to organise himself.”

Gretta thinks teachers are in the best position to raise concerns and that educational psychologists should be empowered to intervene earlier, before their statutory threshold is met and without first having had to create an Education, Health and Care Plan. “People are going through life with ADHD and having loads of problems, causing loads of problems, ending up in prison – so much of it could be avoided,” she said.

Case Study 2

At first, Fabian Fry was unhappy when his eldest son was diagnosed with ADHD, but after realising how much it explained his behaviour, his feelings changed.

He himself was diagnosed with dyslexia at a young age and had always struggled in school, following his son’s diagnosis with ADHD, he decided to seek assessment himself. He has since been diagnosed with both Adult ADHD and autism. Although he empathises with both his sons’ difficulties at school, his eldest son’s decision to stop taking his medication and self-medicate with illegal drugs has left him at a loss.

“I’ve reported him to the police, social services, the lot,” he said “no one seems to take any responsibility.”

Fabian said he was told his youngest son would be referred for further assessment, but due to the closure of his local paediatrics department, his youngest has now been discharged from the service. The family situation is also complicated by the side effects of Fabian’s own medication.

“When I take the medication for one thing it counteracts the other, so when I take my medication for ADHD it makes my autism worse and vice versa,” he said.

“I’ve got the choice of being able to write an email or go out in public,” he said. “If I take the ADHD medication today I can respond to emails, read and write. But if I go out to a shop I can’t cope, I get panic attacks.”

“Even getting my medication balance is hard work for me, so following a complaints procedure is an absolute nightmare,” said Fabian.

Fabian’s Poem
When a child hasn’t a clue, gets distracted by movement & lost in noise too,
Overwhelmed by signals that constantly attack, distraction is my battle that holds confidence back,
I’m not shy or lazy, not stupid nor crazy, feel attacked by a system too underfunded to see, the distress it causes – disconnection indeed.
Bullied by society and professionals too, why make me conform and jump through a hoop?
No room for investigation, no time to persist, can’t you leave me alone or truly help me exist?
Now as an adult I still try my best, but then comes kids and guess what comes next?
I’ve passed on my power, it’s not all bad though, just the system is the failing and that prevents growth.

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