‘Child mental health waiting lists are failing kids like mine – and leaving parents powerless’

Like thousands of parents across Britain, I read the recent revelations about the appalling wait times for Child and Adolescent Mental Health Service (CAMHS) appointments with dismay but no surprise.

Statistics from several NHS boards, unveiled in an exclusive Observer exposé earlier this month, reveal that thousands of children have been made to wait over a year for ADHD assessments, and many considerably longer than that. The investigation brought much needed attention to delays that are significantly detrimental to the wellbeing and education of these children – but it didn’t explain what it’s actually like to have a struggling child who is waiting for help. So I will.

My son – let’s call him T – has been on our local CAMHS waiting list for nearly two years. He was five when the referral was made, he’ll be eight this year and we have no idea when we might finally get some answers or any help. While a diagnosis is not guaranteed, T’s behaviour ticks almost all of the boxes: he’s easily distracted, often acts without thinking, interrupts when others are talking, can’t sit still, doesn’t seem to listen, struggles to focus and has trouble moderating his emotions. Still, we wait.

I started to see differences between T and his peers when he was still at preschool: while they would build, T would smash. He could never be occupied by an activity for long before the need to run around and make noise would overwhelm him, and I could always pick T’s artwork out from the display because his would be half-finished, his attention caught by something else while the rest of the kids were still absorbed by glitter and glue.

As first-time parents, we didn’t know any better and figured he’d grow out of it. But when T started school, he couldn’t turn down the volume of his physicality to suit the constraints of his new environment. His boisterousness, in-your-face friendliness and tirelessly inquisitive nature were embraced at nursery, but his new class teacher told me in no uncertain terms that T’s behaviour was not the norm, and that it was causing disruption and upset in class. Not a week went by when I wasn’t pulled aside at pick-up to be given a rundown of T’s latest “crimes”. I wanted to help address these issues but his teacher had no interest in identifying causes or patterns, or in looking for the good in my four year-old son. To her, T was a problem that me and his dad were to fix, and on our own. 

The onset of the pandemic brought it all to a head. While we all welcomed a reprieve from the ire of T’s teacher, the lack of routine combined with an inability to let him run off enough energy outdoors made things difficult at home. Frequent hyperactive episodes would spiral into nuclear tantrums during which T would scream at me and throw things around the room, scaring his little brother. The situation became unbearable for him and for us, but nothing I tried to get him to behave worked. In desperation, I Googled T’s behaviour hoping for a quick fix, but instead ADHD came up again and again. When I read up on the symptoms they were vividly familiar. I contacted our GP and the school, and both were happy to refer T for an assessment. It felt like we were finally getting somewhere, but when a CAMHS nurse called us three months later she apologetically told us it would be a year before T’s assessment would begin. That was 20 months ago.

As the wait for contact from CAMHS stretches on, I try to equip myself with the information I need to take better care of T and to make our homelife less stressful. I read articles, listen to specialist podcasts and buy all the books they recommend. After reading about how few of the usual parenting strategies work for children with ADHD I’m eaten up with guilt about all those pointless time-outs, the doomed sticker charts I foisted on him, and for the many occasions when I lost my temper and shouted at him for behaviours that simply weren’t under his control. For all my good intentions, I’d been making things worse. 

The books tell me I have to be unshakably calm for T, both to model positive responses to stress and to avoid escalation when he loses his cool. Because ADHD is a developmental condition, I need to acquire the patience of a Zen master while it takes T much longer than his neurotypical peers to learn social cues and develop executive function skills such as emotional regulation. While this feels like an impossible ask much of the time, remaining calm and determined in the face of resistance is essential training when it comes to advocating for your neurodivergent child.

Pre-diagnosis, you are entirely reliant on the good faith of your child’s teachers or caregivers to accept that there’s a neurological cause for their challenging behaviours and to offer appropriate support. Perhaps your school is ahead of the curve on matters of education and inclusion for neurodivergent pupils, but the majority are still playing catch-up – and if that’s the case, you will have to make a nuisance of yourself to make sure your child gets what they need, both in class and in the playground.

Too often, neurodiversity is handled by schools with token gestures like an assembly, while their behavioural policies and teaching approaches remain skewed towards neurotypical kids who can more easily fall in line. Whereas children whose learning differences are more obvious or made known to their classmates might receive greater understanding and acceptance, a struggling child who hasn’t been diagnosed will often just be labelled naughty, which gives the other children tacit license to avoid them or be unkind. Not that adults are always more understanding…

The ways that ADHD manifests itself in children doesn’t align with traditional standards of good behaviour, so tolerance for their loudness, their impulsiveness or emotional outbursts can be hard to come by. I’ve had a man yell “Control your fucking child, you stupid woman!” in a shop full of people, and as upsetting as that was, there are days when I would take the direct contempt of a stranger over the more subtly persistent ways that T and I are judged and excluded.

There have been times when T has bonded with another child and their parents and I have become friendly, but as soon as T’s behaviour has caused a problem between the kids those friendships, both T’s and mine, have been silently withdrawn. Playdates that have gone sideways are never repeated, the mothers going from friendly to passing by me quickly with tight, uncomfortable smiles on the school run.

Some of them know about T’s situation, but it hasn’t made a difference. I get that these parents are looking out for their own children, but they’re also setting the example for their kids that it’s OK to exclude other people if they behave in a way that you don’t immediately relate to or understand, which only perpetuates outdated attitudes of intolerance and ignorance for a new generation. These encounters have exacerbated my already high anxiety on the school run each day. Now, besides worrying if T will have a good day and if I’ll be pulled aside by the teacher in full view of other families, I dread being given those cold, tight smiles that remind me we are on the outside of this community.

Kids with ADHD are often told off, shamed and excluded, and this is especially true for children who haven’t been diagnosed and afforded the necessary accommodations and compassion. It takes a visible toll. I have watched my son go from an outgoing, friendly and affectionate boy to being defensive and surly around his peers, often getting the verbal jabs in first after becoming used to teasing and rejection in the playground. He’s internalised the messages he’s received from other children and adults, with “they think I’m a bad kid” becoming a defeated “I’m a bad kid” with alarming speed. Because T struggles to focus in the classroom, he is falling behind in some areas at school, and this further erodes his already brittle self-esteem. It is a frightening thing to witness in someone so little. 

Faced with an indefinite wait for a CAMHS assessment and the deteriorating mental health of their children, it’s no wonder many parents seek a private assessment, but this is no magic bullet. The wait lists for private clinics have lengthened considerably since the pandemic and resultant child mental health crisis began, with some practices even closing their lists until they can process the backlog. Even if you can get seen, the costs can be prohibitive: an assessment by a private clinic costs upwards of £1,500 and if your child is diagnosed and needs medication, you will have to pay hefty prescription fees until their dosage has been settled and their GP is happy to take on shared care, which is far from a given. Some NHS GP’s refuse to accept a private diagnosis at all, rendering a costly private assessment futile.

So, what are parents like me to do? Personally, I’m still learning to embrace the small wins and trying not to let what I can’t control get to me as much. I’ve successfully advocated for T to be treated as a pupil with ADHD in class – at least for this academic year – and this has been a positive change for him, but I’ve also had to step back from worrying about his social interactions so much and instead focus on his happiness at home. Often this approach doesn’t feel like enough, and on the days that he’s upset because someone’s told him he doesn’t have any friends or he’s not been invited to yet another birthday party, I feel furious with myself for not being able to fix it all for him. But my job as his mum, I now realise, is to meet him where he’s at and build him up. Although it’s important that I help him to develop those lagging executive function skills, it’s perhaps even more vital that I celebrate him for exactly who he is to counterbalance the negativity he often encounters when he steps out of our home.

Ultimately, all I can do is love him, and wait.