Mums and dads with children who are in the process of being assessed for attention deficit hyperactivity disorder (ADHD) are being advised to “hold on in there” by parents who have been in that position themselves.
The diagnosis process can be slow and complicated – a report organised by ADHD charities and experts found that nearly a third of children with the disorder had waited for two or more years to receive a diagnosis.
But diagnosis is vital, as the report’s authors warn that: “if ignored, ADHD brings consequences that can range from school exclusion and increased risk of anxiety and depression through to selfharm and even suicide”.
Dr Tony Lloyd, CEO of the ADHD Foundation, who worked on the report said: “Ignoring ADHD is a potential time bomb for these children, placing them at risk of severe problems that may well burden them for their entire lives.
“Early diagnosis and treatment is proven to reduce anxiety and the risk of depression and other mental health problems later in childhood.
“Treatment will also improve your child’s experience of school and they will more likely achieve their potential.”
ADHD is a group of behavioural symptoms that include inattentiveness, hyperactivity and impulsiveness. It affects just over 300,000 children in the UK – or around one child in every classroom, on average.
Yet, many people questioned as part of the A Lifetime Lost, Or A Lifetime Saved report felt the disorder wasn’t recognised as a real condition by some GPs and school staff.
This lack of belief can cause parents to question whether they want to get their child diagnosed at all.
But Dr Lloyd stresses that getting a diagnosis is the only way to access official support and two parents who have been through the process have told HuffPost UK they are very glad that they did.
Angela Samata’s 17-year-old son Benjamin was diagnosed with ADHD when he was four years old.
“I remember feeling as if it was my parenting that was being scrutinised as well as Benjamin’s behaviour,” recalled Angela who is a freelance arts professional from Merseyside.
“But I was prepared to go through that because I knew it would mean that Ben would eventually be able to access the help he needed… and I was right.
“My message to any parent waiting for their child to be diagnosed is to hold on in there.
“I know it’s extremely difficult and very stressful for both parents and children, but in our experience Benjamin’s diagnosis was the trigger that allowed us to ask for help he needed.”
What are the ’signs my child may have ADHD? “Children who display signs of ADHD will have a number of indicators as they are growing up,” explains Dr Lloyd. “Frustration at not being able to remember what they are learning in school and in life; they can be quick to anger and display an overly impulsive behaviour. “There are also children who retreat into day dreaming and have poor concentration – homework can be a major cause for distress at home. “Sometimes but not always a hyperactivity and poor sleep patterns can add to stress.”
Sheila Keeling, development manager at ADHD support and action group Add Up, concurred that the diagnosis process can be quite daunting for parents, but it is worth seeing it through.
It took years for her to get a diagnosis for her son Martin (now 27), after she grew concerned at his lack of vocabulary.
“There’s a lot of guilt,” said the mum from Havering. “And you may question why did it happen to me? Because there’s a lack of understanding and belief that ADHD exists.
“But diagnosis is fabulous, because it does give you a pathway of how to proceed and support your child.”
“When my son was little he didn’t talk,” Sheila explained. “He could gesture and make noises but he had no language.
“When he went to school he didn’t know colours or numbers. But I was told it was because he was the youngest of my four children and the others were doing things for him and one day he would just come out with a long sentence.
“When he was six years old, I said to my GP: ‘You need to find me somebody who can help my son’.
“She referred me to a specialist and he finally diagnosed my son with ADHD.”
How are children diagnosed with ADHD? “The NHS ‘pathway’ to get a diagnosis varies in different areas but first thing is to speak to your GP and ask for a referral for an assessment,” advises Dr Lloyd. “Speak with your child’s school and find out if your child is struggling with learning. It is a myth that all children with ADHD are poorly behaved so the school may say they are having no problems – based on the assumption that ADHD means poor behaviour. But many children with ADHD behave perfectly well in school – what you need to find out from the school is whether there is any learning delay or learning difficulties”
After being diagnosed, both Angela and Shelia’s sons were put on medication – which they both came off at the age of 16.
Angela’s son Benjamin was also supported by regular sessions with Child and Adolescent Mental Health Services and Orrets Meadow outreach services, which came into his primary school to deliver one-to-one sessions to help to bring his reading and writing up to speed.
He has now successfully gained 8 GCSEs and is currently doing A Levels.
Shelia learnt how to support her son outside of school through her work with Add Up – a small charity in Essex that has been going for 20 years.
“We developed a programme – it teaches parents how to think differently and get inside their children’s head,” she said.
“It also teaches children to take responsibility for their actions. It teaches them their ADHD is their ‘monster’ and when their monster is big, they’re angry.
“We teach them to think about what makes their monster big and what they do that makes it smaller. It makes them think: if I do this, then that happens, and do I want that to happen? No. So I won’t do that.
“It teaches them to be responsible for their anger.”
She said the medication and understanding turned her and Martin’s lives around.
“After he started on the medication Martin gained skills in language,” she explained.
“He even started to talk to me about things that happened to him when he was three.
“Everything started to fall into place.”
After finishing school Martin went to college and then signed up to become a police officer.
“I’m really proud of him,” said Shelia. “In that environment he has to manage his ADHD. He can’t be impulsive, he has to write reports, so it’s an environment that really works for him.”
But support for families of children with ADHD is patchy across the country and Shelia feels all too often families get little help beyond medication.
“The medication is just one part of the package,” she said. “Everybody around this child needs to be singing from the same hymn sheet, the parents and the school need to know how to support them too.”
The new A Lifetime Lost, Or A Lifetime Saved report backs up her view:
“An analysis conducted between 1999 and 2004 found that around half of children with ADHD had not been provided with access to specialist healthcare services,” it states.
“Despite National Institute of Health and Care Excellence (NICE) guidelines recommending that suspected cases get referred to specialist services who can perform diagnostic assessments and, if necessary, initiate pharmaceutical treatment.”
Dr Lloyd said: “We urgently need to look at policies around ADHD and ensure that it starts to be recognised as a vital part of mental health reform moving forward.”
NHS England confirmed to the BBC that there has been increased investment in children’s mental health services.
“The NHS is implementing new best practice guidance to improve care for young people with ADHD which will include better and faster diagnosis,” they said.
For further information and support relating to ADHD: There are parents information resources on the ADHD Foundation website, which can be downloaded. Visit UKAP for details of national and local support groups. Or for information on local support groups, contact Attention Deficit Disorder Information and Support Service (ADDISS) or call 020 8952 2800.