‘Children with ADHD are being failed’: parents share their experiences of an overwhelmed system

Attention deficit hyperactivity disorder (ADHD) is a neurodevelopmental condition that is shrouded in misunderstanding, uncertainty and controversy. There is, for example, no definitive agreement on how many people have the condition. In the UK, one survey has put the incident rate in childhood (five to 15 years old) at just over 2% (3.62% of boys and 0.85% of girls). ADHD support groups cite figures of 5%. One UK study found 11% with symptoms but 6.7% with disorder and impairment.

Even the name can be misleading. “We don’t have a deficit of attention,” says Henry Shelford, co-founder of ADHD UK, a charity aimed at raising awareness of the disorder. “It’s a lack of control of attention. And people with predominant hyperactivity make up our smallest cohort.”

If all this doubt and confusion can leave people with the condition feeling unseen or disbelieved, it also adds to the bewilderment many parents experience when dealing with the possibility that their child may have ADHD. While adults with the condition can make informed choices about diagnosis and drug treatment and going public, children are in a more vulnerable position, caught up in rapid physical and mental change, educational deadlines and normative social pressures. Whatever decisions are taken or not taken on their behalf can have a lasting impact.

The disorder, as defined by the US psychiatric bible the Diagnostic and Statistical Manual of Mental Disorders, features many different symptoms, including carelessness and lack of attention to detail, restlessness and edginess, starting new tasks before finishing old ones, poor organisational skills and the inability to focus or prioritise. In children, these may manifest themselves as excessive talking, fidgeting, trouble waiting in line and difficulty following direction.

The disorder is divided into three types: predominant hyperactivity and impulsivity (about 15%), predominant inattention (about 20-30%) and a combination of hyperactivity-impulsivity and inattention (more than half of the total). It’s the hyperactive-impulsive form that features most prominently in popular characterisations of ADHD, while inattention, unsurprisingly, gains the least attention.

You don’t see any greater event that precipitates your understanding that there’s something wrong

Lawrence Norfolk, novelist

In among this knot of information there is one fact that is beyond dispute: the rapid increase in children and adults seeking diagnosis in recent years, particularly since the Covid pandemic and its lockdowns.

Garry Freeman, a special educational needs and disabilities consultant, says that the lockdowns between March 2020 and summer 2021 left a lot of children with special needs – schools were kept open only for those with an education, health and care plan (EHCP) – without necessary social interaction and educational support. “Parents felt driven to get a diagnosis, driven to request an EHCP assessment, because they thought that was the only remedy,” says Freeman.

Earlier this year, Dr Tony Lloyd of the ADHD Foundation charity suggested there has been a 400% increase in the number of adults seeking diagnosis since 2020. The monthly average number of NHS patients receiving ADHD drugs increased by nearly 18% from 2020 to 2021. No one is sure about the figures relating to children because there is no system in operation that tracks children seeking treatment, but several child and adolescent psychiatrists I spoke to reported double, triple or quadruple numbers.


Back in March the Observer asked readers who were parents of children with ADHD to share their experiences of negotiating the educational and medical systems. The response was large, impassioned, eloquent and bristling with frustration. Nearly everyone complained about the same thing: the waiting time to get a diagnosis. Two years was the length most often quoted, but there are areas of the country in which the time is said to be much longer.

As one mother in Sussex, who waited two and half years for a diagnosis for her child, put it: “Parents complain all the time about the child and adolescent mental health services [Camhs] and the problems are caused by years of underfunding. Children are waiting ridiculous times for assessment – three years plus. In this time, they are being failed and not achieving their potential.”

It’s not necessary for a child to obtain a medical diagnosis to gain special help at school (although it often helps). Schools have the power to request a local authority assessment that could lead to an EHCP, but their willingness to do so and the readiness of local authorities to respond differs enormously across the country. Moreover, even if an EHCP is enacted, it won’t entitle the child to the ameliorating drugs that can only be prescribed as a result of a medical diagnosis – for which there are the painfully long waiting times.

In addition to this complicated institutional landscape, with its forest of acronyms, there is often also the parents’ own ambivalence and misgivings. Do they have a boisterous child, or perhaps one who’s easily bored, or is there something else, something deeper and harder to manage, that means there is no parenting fix but instead a neurodevelopment disorder in need of medical attention and educational support? Or could a medicalised route stigmatise a child or make them feel “abnormal”?

A lawyer in Oxfordshire, who is a mother to a nine-year-old boy with ADHD, wrote to say a medical diagnosis had not helped him, but rather encouraged him to “play the part of a child with ADHD to perfection”.

“Lots of young boys are being diagnosed,” she says, “and we are concerned they are being given labels when they are just immature or not very interested in schoolwork.”

These dilemmas can in turn be made more confounding by the wealth of conflicting information and advice available online and on social media. The late and influential educationalist Ken Robinson has a popular video on YouTube in which he dismisses the idea of an “ADHD epidemic”, suggesting that it is the “tonsillectomy” of this age – a medical fashion that will pass.

Shelford says people with ADHD are five times more likely to have attempted suicide

He attributed the distraction children are suffering to the rote learning and standardised tests of so much schooling. “You sit kids down hour after hour doing low-grade clerical work,” he said in a Ted Talk, “don’t be surprised if they start to fidget. Children for the most part are not suffering from a psychological condition. They’re suffering from childhood.”

Against that kind of input, ADHD support groups argue that not only is the condition underdiagnosed, especially among girls, and poorly dealt with by society at large, but that those with ADHD are at significantly greater risk of ending their own lives.

Shelford says people with ADHD are five times more likely to have attempted suicide, and studies show that the actual suicide rate is about double for those with ADHD compared with the general population.

Far from being a passing trend, the disorder, Shelford notes, was first identified in 1902 by the British paediatrician Sir George Frederic Still, who described it as “an abnormal defect of moral control in children”. But it wasn’t until 2000 that it was formally recognised by the National Institute for Health and Care Excellence for children in the UK and it took another eight years before the same thing happened for adults. “We’ve failed on ADHD for a long time,” says Shelford.

While ADHD groups acknowledge the part played by lockdowns in spurring people to seek a diagnosis, they also attribute the growing number of cases to increased awareness, helped by a host of celebrities announcing that they have the disorder, and believe that the recent upsurge still does not fully represent just how widespread the condition is.

Not all professionals in the field necessarily agree, but few want to go on record with any kind of statement that questions the diagnostic basis of ADHD.

“There is undoubtedly a flood of young people in distress,” says a veteran child and adolescent psychiatrist, who does not want to be named, “but I worry that we’re overdiagnosing young people. I think we’re missing the point that quite a lot of our mental health is influenced by relationships and other extraneous factors.”

She believes that social media exacerbate attention and concentration issues. At least one academic study has shown an association between high social media use and likelihood of having ADHD, but as the old saying goes, correlation does not equal causation. If you did have problems with maintaining attention, the rapid hit nature of TikTok and Instagram might seem especially appealing, even addictive, yet that doesn’t mean they are responsible for the condition. That said, it’s probably fair to say that the attention spans of all owners of smartphones have been noticeably shortened.

The child psychiatrist accepts that the symptoms children are experiencing are real and require treatment. Yet she would like to see a national conversation take place about where increased levels of stress, leading to a whole range of mental illness, are coming from. In the case of ADHD, she says, there is a reluctance to initiate that conversation partly because the drug that is most often prescribed, methylphenidate (better known by its original brand name, Ritalin), can be very effective at suppressing the symptoms. It is not a cure, but it, and other drugs such as atomoxetine, often help to improve concentration and lessen impulsivity.

“So that means you are pushed into that diagnostic framework, which is a bit tick-boxy,” she says.

Owing to its effectiveness, the drug route has obvious attractions, particularly for parents whose children have been struggling for many years, though it isn’t always an obvious choice.

The novelist Lawrence Norfolk says that it’s wrong to think that there is a sort of watershed moment in which a child’s behaviour announces itself as ADHD.

“From the outside, you think there will be some kind of event or catastrophe that will pitch you into a sudden understanding that you have to do something. And that’s not how it is, particularly with this syndrome.”

He describes his son as a not untypical fidgety boy from an early age, but whereas his peers gradually adjusted to the methodical demands of school, he remained unable to settle in or down. By the age of 15 he veered between “brilliant and appalling” schoolwork and was on course to fail academically.

“You don’t see any greater event that precipitates your understanding that there’s something wrong,” Norfolk explains. “Just an escalation of complaints from school, because that’s the most structured environment he’s in.”

It was in a meeting with a sympathetic teacher, he says, that he could suddenly see what had been hiding for years in plain sight. After a long conversation, she asked if he and his wife had ever thought of having their son “assessed”. He says: “You could see the terror in her eyes as she said it, because it’s an incredibly loaded word.”

It would require a revolution in education funding, perhaps in education itself, to deal with the mental health crisis

But its mere mention was enough to enable Norfolk to recognise that there was a medical issue that required further investigation. “In effect, there was no NHS provision,” he says, and despite having a number of very good medical friends and contacts, he found it difficult to find a private psychologist to do the assessment, although he was by then certain that his son had ADHD.

“I think if your child has ADHD, and there’s some shilly-shallying around this, but if your child actually has it, as soon as you start reading up on the symptoms, it’s obvious it’s an exact fit, and then our anxiety was, will anyone else recognise it?”

Norfolk says that getting the right stimulant can involve trial and error but the effect on his son was almost immediate.

“He took the first dose and went to school. At midday I received a call about his behaviour (deep breath – I’d taken quite a few such calls). Three teachers that morning had independently sought out his head of year to remark how they had never had a better and more fruitful lesson from my son. It felt like someone had lifted a camel off my shoulders.”

In the event, he went on to get stellar A-level results and is now thriving at university, although he still forgets things and fails to “read the room”. “ADHD is an ongoing story,” says Norfolk. “It’s not about an end.”

As uplifting as such stories are, not all parents want their children to be put on stimulants, especially when their children are young.

* * *

Sian Brown is a 40-year-old master’s psychology student doing her dissertation on the lived experience of parents accessing treatment and interventions for their children with ADHD. It’s an area in which she has personal experience.

From an early age her daughter had trouble sleeping and found it difficult to settle at school. But it wasn’t until her husband began to suspect that he had ADHD that she saw the signs of the same disorder in her daughter – it is believed by many experts that there is an inherited genetic component to the disorder. Her first primary school was not much help. “They just said, she needs to focus more, pay more attention.”

So Brown put her daughter in a different school, and after several visits to the GP she was referred to Camhs and unusually only had to wait a year for an assessment, which revealed that she did have ADHD.

“We were given some badly photocopied leaflets with bullet points about ADHD and suggestions of things to look out for online,” says Brown.

Her daughter was also offered drugs, but as she was only nine, Brown declined, and no other treatment was provided. The best thing about the diagnosis, says Brown, was that she “had knowledge and understanding of what was going on” for her daughter, which was “transformational, because we had a language with which to talk to teachers and to explain to family members why it was difficult for her to sit at a table”.

As much as the NHS is struggling, and often failing, to respond to the mental health demands of young people, it’s arguably schools that are in the most pressured position. They have a duty of care to their pupils, yet at the same time they are limited in what they can do by budgetary constraints and the readiness of their local authorities to respond to assessment requests.

Some schools are extremely active in focusing on struggling children, often making available resources even without a formal assessment. Others are reluctant to get involved unless forced to. One mother in Lancashire says her son’s school left her to deal with everything in terms of securing an assessment because, she says, they “do not believe in labelling”.

In theory, and indeed in law, local authorities are obliged to assess children if there is “any” evidence for concern. In practice, nearly all of them put in place higher evidential hurdles to prevent their exposure to what could be crippling financial special needs obligations.

“The law requires them to fund all provisions in full,” says Freeman, “And that could be £20,000, £30,000 or even six figures a year [for one pupil].”

The local authorities, in turn, complain of being starved of central government funds. One expert in the field told me that he had heard of cases in which the Department for Education had muscled a local authority to hand out fewer EHCPs.

It would require a revolution in education funding, and perhaps in education itself, to deal with the mental health crisis that professionals say is under way. Shelford argues that such a revolution is not only necessary but that, in the long term, it will prove cost-effective.

“In youth institutions,” he says, “it’s thought that around 40% have ADHD, and in prison it’s around 25%. And you’re also looking at people who are getting diagnosed with depression or anxiety and that makes a substantial cost to the NHS for untreated ADHD.”

Few parents want or are able to wage war on the whole medical-educational setup, but it’s often those who are most prepared to kick up a fuss or most able to deal with bureaucracy that get heard.

There is anecdotal evidence that schools and local authorities are more likely to respond to children with predominant hyperactivity rather than predominant inattention, because the former is potentially more disruptive to others, so parents of children with predominant inattention are left with a bigger struggle on their hands.

Brown says that some of the bureaucratic process she has encountered is daunting, and she believes this is one aspect of ADHD that favours middle-class parents with systems knowhow.

“I live in a nice suburb of Manchester. I’m educated. I’m able to fill out forms. And the amount of form-filling that you have to do to access resources is incredible, and I suspect a huge barrier for lots and lots of people,” she says.

In Brown’s own case, yet more form-filling was required when she decided that her daughter was ready to take stimulants in her last year of primary school. The outcome is that her daughter is able to sit still in class – “She’s not doing cartwheels” – and is fully engaged in learning.

The downside is that if she takes the drugs at the weekends, which she tries to avoid, she is subdued and not quite herself, which troubles her mother.

“As exhausting as she can be,” says Brown, “the kind of the sparky energy and frenetic activity is an important part of who she is.”

* * *

This is the neurodiversity paradox. We live in an age when different mental settings are better appreciated and celebrated, yet at the same time there is tremendous social and economic pressure to fit in. The need to square this particular circle becomes especially urgent as the exam process kicks in that Robinson believed was the cause of so much restlessness and inattention.

An EHCP can provide a more suitable and less stressful educational environment for children with ADHD, but it’s drugs that will often best aid performance within the normal educationally competitive realm of school. And unlike a local authority assessment, a medical diagnosis is effective beyond school, right through university and, in theory, into the workplace.

This is another reason why many parents are so keen to get a diagnosis. But such is the demand, prices can be as high as £3,000 for a psychiatric assessment. There are considerably cheaper alternatives, especially online with trained psychologists or nurses, with some available for £600 or £700 – still not an insignificant sum of money. Then there is the cost of the drugs: if prescribed privately, they can be about £180 a month.

Katy, a mother from Birmingham, says that her child’s school advised her against private assessments because it deemed them less rigorous than the NHS. In the school’s experience, she was told, no child had ever received a negative diagnosis, which the school attributed to the financial benefits of a positive one. This line was repeated to me by a special educational needs and disabilities coordinator.

It’s a prejudice that may grow in the wake of a recent Panorama that exposed private clinics offering cheaper online assessments that, the programme argued, were too quick and limited to provide a reliable diagnosis. All three private assessments the reporter underwent saw him diagnosed with ADHD, contradicting a longer assessment done by an NHS psychiatrist.

The programme has angered ADHD activists, who claim that it will stigmatise people with ADHD and create a false picture of a condition exaggerated and exploited by unscrupulous professionals. They also feel the way that the NHS assessment was represented as lengthy and rigorous does not match day-to-day practice. “They tarnished all private providers,” says Shelford.

A great deal of private practice is conducted by the same consultants operating in the NHS, he notes, and in any case, what choice do parents have if the NHS waiting lists are so long?

It can sometimes seem like the whole system – educational and medical – is geared to raising as much stress as possible, which of course is the last thing parents of children with ADHD or suspected ADHD need, and in turn is therefore highly unlikely to help the children themselves.

Related: No, ADHD is not a con. If that’s the message you got from Panorama’s exposé, you weren’t paying attention or watching properly | Adrian Chiles

Whether there needs to be a wholesale restructuring of mental health services and special needs provisions in schools is a question worth asking, but realistically there seems little chance in the straitened near future that either the school system or the NHS will receive the kinds of massive increases in funding that are required.

In the meantime, it may be worth looking at what is propelling gathering numbers of children towards states of debilitating mental stress – is it genetic or environmental, or some unknown combination of the two? A productive national debate will require focus and determination, openness and a readiness to listen, constructively disagree and respect different opinions.

We are not well stocked with many of those traits and there’s an argument to say that in this regard the attention deficit is society-wide. People with ADHD commonly struggle with learning from the past and taking into account the consequences of actions, or inaction, for the future. Perhaps now is the time for politicians and everyone involved with the wellbeing of young people to meet that challenge too.