This post isn’t really about Brexit. I only mentioned Brexit because I was recently interviewed on Radio 4’s PM programme by Evan Davis. The interview was sandwiched either side of the ongoing debate around Brexit. In fact, there’s so much about Brexit in the news right now, I’m surprised PM managed to fit me in at all!
So, how did I end up on Radio 4? Well, over the last few weeks, the PM programme has been looking at anti-depressants, specifically around the difficulties some people face when they stop taking this medication.
As I’ve saidpreviously, I believe anti-depressants were key to Nora’s recovery. I don’t know how she could have come out of that dark and empty place without medication.
Before Nora fell ill, I believed – like almost every parent I’ve ever spoken to on this subject – that medicating a child with anti-depressants is ‘a very bad thing to do’. I had no scientific evidence to back up this opinion. My views were based purely on what I’d read and heard in the mainstream media.
I was wrong. And I wanted to join the ongoing debate on PM to share our (largely positive) experiences with anti-depressants.
I wasn’t trying to say that prescribing anti-depressants to children is always the right thing to do. I know that too many children are being prescribed anti-depressants in the UK today. I also know that this is happening because of the shocking lack of resources available to treat children with mental health problems.
In an ideal world, every child with a debilitating mental health problem would be referred to CAMHS, where they would be assessed and get the treatment they need. This isn’t happening, because CAMHS are woefully under-funded and under-resourced.
GPs are having to fill a gap they’re simply not equipped to fill. They are being forced to make shortcuts and prescribe medication in the absence of more suitable forms of treatment. This is a dire situation that will only change when the government start to properly address the lack of funding and resources for children’s mental health.
But…despite the fact that too many children are being prescribed anti-depressants, sometimes medication is the right thing to do. It was right thing for Nora, and it’s the right thing for thousands of other children too.
Nora’s psychiatrist called me this morning, after hearing PM last night. She told me she never prescribes anti-depressants unless she’s absolutely certain it’s the right thing to do. She said she felt ‘humbled’ and ’emotional’ hearing me talk. And she said that treating children like Nora, and being part of their recovery, is what makes her job worthwhile.
We recently said goodbye to Nora’s CAMHS* counsellor. This wonderful woman first met us when Nora was at her worst.
She was no longer speaking, had stopped eating and wasn’t able to do many of the normal day to day tasks most of us take for granted. She was self-harming and suicidal. She had been hospitalised on several occasions, and was assessed by CAMHS every time she ended up in hospital.
Despite the well-documented stories of how difficult it can be to access children’s mental health services, this wasn’t our experience. From the outset, CAMHS were available and willing to help Nora.
However, as we were already paying for Nora to be treated privately, we had to make a choice: stay with the private service or move to CAMHS. Initially, we chose to stay within the private sector.
What changed our mind? A number of factors, including an afternoon of confusion following one of Nora’s terrible ‘meltdowns’. Normally, I was able to manage these episodes. On this day, things got so bad I ended up dialling emergency services, who sent an ambulance to the house. The paramedics immediately decided that Nora needed to be hospitalised. There was just one problem…
Because Nora was being treated privately, the paramedics didn’t know what hospital Nora should be taken to. They called our nearest NHS hospital, who told them Nora needed to be taken to the private hospital where she was being treated as an outpatient. But when I called the private hospital, they told me they couldn’t see her as it was an emergency and they didn’t deal with emergencies.
Several phone calls later, we ended up at an NHS hospital in a nearby town. We stayed there for several nights, where Nora was – once more – assessed by CAMHS. It was at this point that we decided to switch from the private sector to the NHS.
In retrospect, I’m pretty sure this decision saved Nora’s life.
The care we’ve had under CAMHS has been second-to-none. During the worst of Nora’s illness, we had mental health workers calling to our house daily, providing much-needed support. There were people I could call, twenty-four hours a day, when I was worried about my daughter. We had a team of caring, dedicated people, all doing their best to keep my daughter alive.
This was very different to the private sector where I had one phone number for one psychiatrist. In all the time we were under her care, she never once returned any of my phone calls.
Since that first meeting with our CAMHS counsellor, Nora’s recovery has been remarkable. This is largely thanks to her dedicated CAMHS carers, who do one of the most important jobs there is.
Lack of access to children’s mental health services has been widely document. I’ve blogged about it here previously. Understandably, parents who cannot get help for their children feel angry and frustrated.
These parents are right to be angry. In the UK today, three in four children with a diagnosable mental health disorder do not get access to the support they need. For those lucky few who do get allocated a service, the average waiting time is almost two months (and far longer in some parts of the country).
But we can’t blame CAMHS workers for the woeful state of children’s mental health services. Instead, the blame lies with the people making decisions around how public funds should be allocated.
Today in the UK, only 0.7% of the NHS budget is spent on children’s mental health. Without adequate funding and resources, CAMHS are simply unable to support the growing number of children and adolescents being referred to them.
This time last year, Nora’s illness was only beginning. We had no idea how bad things would become. We never could have imagined that our eleven-year-old daughter would reach a point where she was so ill she wanted to die.
For some time, I’ve wanted to write about how Nora’s illness progressed, but I’ve never been able to get the words down. It’s always been too painful.
But…I want other parents – who are going through something similar – to know that they’re not alone.
So, I’ve finally written something. I hope it helps.
Nora’s anxiety has become unmanageable. The only way I can get her into school if we go for long walks beforehand. This means getting up early and walking for up to two hours before school.
I know that Nora’s already in a dark place, and she needs help. Through our GP, we’ve got a referral for a private consultation with a psychiatrist. Apparently, Nora isn’t ill enough for a CAMHS referral.
The psychiatrist thinks Nora may be suffering from depression, although this condition is – apparently – extremely rare with children as young as Nora (she is eleven).
Because of Nora’s age, the psychiatrist rules out anti-depressants, and recommends a ten-week course of CBT counselling. My husband and I are relieved. It seems inconceivable to medicate our eleven-year-old daughter with anti-depressants.
The CBT sessions aren’t helping. Nora continues to deteriorate and I suspect the counsellor doesn’t really know how best to treat her.
Nora’s school have suggested that trying – and failing – to keep Nora in school is counter-productive. The counsellor disagrees and thinks we should keep sending her in.
We take the school’s advice, because it feels like the right thing to do. Nora stops going to school.
By now, Nora is self-harming and suicidal. More than once, we’ve ended up in hospital, where we spend nights on ‘suicide watch’. Nora undergoes several psychiatric evaluations. These confirm what we now know: Nora is suffering a severe depressive episode.
Nora’s psychiatrist prescribes anti-depressants. We are relieved. It’s clear Nora needs more than weekly counselling sessions to get her better.
Nora has stopped speaking. Completely. The only time I hear her voice is during her terrible meltdowns, when the weight of what she is enduring simply becomes too much. These happen several times a day.
Following one particularly bad episode, we end up back in hospital. We are given a private room, because Nora’s meltdowns are so upsetting to the other children on the ward.
For the third time, Nora is assessed by CAMHS, who tell us they can’t treat Nora while she’s being seen privately.
We have to make a choice. The psychiatrist’s secretary calls me and tells me Nora will get much better treatment under CAMHS. I take her advice and we end the private treatment.
We are now under the care of CAMHS. We now have a team of people looking after us. There are people I can phone at any time of the day and night. Mental health professionals visit us at home several times a week. We have a new psychiatrist and a brilliant counsellor.
Time and again, these professionals tell me they have never encountered a child with symptoms as severe as Nora’s. This is frightening, but also oddly reassuring because I know she is – indeed – very, very ill.
This month is Nora’s birthday. Her friends come to visit with presents. She can’t speak to them, but they all give her hugs and I’m glad they’ve come. They cry, because they haven’t seen her since she fell ill.
She is pale, gaunt and silent. She has lost so much weight, her friends look like giants beside her.
Nora’s CAMHS team tell me they are ‘flummoxed’ and simply don’t know how to treat her. If they cannot come up with a plan soon, the next step will be to admit her to a psychiatric unit. This is a specialised unit for teenagers with severe mental health problems. Typically, children in this unit are aged from fourteen to eighteen. Nora is twelve.
We are told Nora will have to be fed through a tube if we cannot get her to eat.
We have a care plan! It’s pretty basic but it feels like a huge step forward. It involves Nora doing things like getting out of bed by herself, eating regularly, getting dressed and getting fresh air each day.
Nora doesn’t think she will be able to do any of these things. She locks herself in the bathroom and tries to cut her wrists. Luckily, with the help of a neighbour, I’m able to knock the door down before she cuts herself too badly.
Although this is awful, it’s also a turning point. Gradually, we see tiny signs of improvement. And then something wonderful happens. Nora starts speaking again. Whispers at first, just a few words every now and then.
But every single word is precious. Over the course of her illness, I’d forgotten what her voice sounded like; I would watch videos I’d recorded before she fell ill, simply so I could hear her speaking.
Today (one year since the beginning of Nora’s illness)
Nora is speaking, eating, exercising and engaging with life. She sees her friends. She goes to the gym and goes for long runs most days. She writes poetry, and takes acting classes. She is rehearsing for the lead role in a play.
We don’t know what the future will hold but, then again, none of us know that.
Four months ago today, I wrote the Nora’s story page of this site.
Re-reading this now, it seems extraordinary to think how ill Nora was, and how rapidly she is recovering.
Four months ago, my beautiful daughter was in the grip of a crippling depression. She had stopped speaking (she was completely mute for several months), she was unable to get out of bed or get dressed without help, and she had lost so much weight we thought she’d have to be fed through a tube.
Nora’s anguish was so unbearable she didn’t want to continue living. More than once, she was admitted to hospital after serious suicide attempts.
It was a terrible time for our family but, even during the worst of it, we never stopped believing Nora would get better.
Four months on, and Nora’s recovery has been nothing short of miraculous. She is no longer suicidal or self-harming. The symptoms of her psycho-motor retardation are gone. She is speaking again, having fun and engaging with life.
Since I started this blog, I’ve met so many parents taking care of children with mental health problems. Parents, like me, who are struggling to deal with the challenges of supporting a child with a mental illness. Parents who desperately need help that simply isn’t available.
It’s no secret that the lack of resourcing and funding for children’s mental health in the UK is disgraceful. This is something I’ve blogged about previously, and it’s a topic I’m sure I’ll come back to again.
The problem isn’t just with children’s mental health, either. One in four people in the UK are reportedly suffering from some form of mental illness. Yet, all too often, these people are not getting the help they need.
It’s left to mental health charities to fill the gaps in mental health provision. Yet these charities, too, are stretched to their limits.
That’s why I am asking all readers of this blog to support this year’s Telegraph Christmas Charity appeal, which is raising much-needed funds for three mental health charities:
Changing Faces – which provides advice and support for people with a visible difference through counselling, networks and skin camouflage services.
Young Minds – a charity that offers a vital lifeline to thousands of parents and carers to prevent young people from coming to harm.
You may not have suffered mental health problems yourself, but I guarantee you know someone who has. Mental health charities offer an essential service to families and individuals who desperately need help.
Please help these charities to carry on doing the great work they do.
Over the last year, I’ve learned a huge amount about mental illness in general, and childhood depression in particular. I’m not an expert, but I know a hell of a lot more than I did before my daughter’s illness.
So, to mark World Mental Health Day, I’ve decided to share the five things I wish I’d known earlier about mental illness.
Depression is a terrible illness
Before Nora fell ill, my knowledge of depression was limited. I knew it was an illness caused by a chemical imbalance in the brain. I vaguely understood that depressed people ‘felt down’ and ‘lacked energy’ and sometimes needed medication to help get their lives back on track.
I had no idea it could be a life-threatening illness that, in extreme cases, literally sucks the life out of its victims.
I hadn’t heard about psycho-motor retardation, a terrible depression-related condition that slows down your mind and body, making even the simplest thoughts or movements seem impossible.
At her worst, Nora lost the ability to speak. But she was always able to communicate, using pen and paper to tell me what she was experiencing. This post about depression, captures how she described the illness.
Children with depression hear voices
Did you know this? I sure as hell didn’t.
By the time Nora told me she was hearing voices, she was already very ill. We didn’t know what was happening, or why she’d got ill so quickly.
Like, I suspect, many parents who don’t know much about mental illness, I assumed hearing voices was a ‘very bad thing indeed’. Turns out it’s not half as bad as I imagined.
Of course, it’s very scary for the child who is hearing the voices. But, according to Nora’s psychiatrist, 90% of the children she sees hear voices at some point during their illness.
I know some people have concerns about giving anti-depressants to children. At one stage, I might have been one of those parents. I’m not now.
It’s okay to talk about suicide
What parent wants to discuss suicide with their eleven-year-old child? Not me, that’s for sure. Or so I thought until the first time Nora tried to take her own life. Since then, I’ve learned a lot about what you should – and shouldn’t – do when your child has suicidal thoughts.
The most important thing to know is this: if your child tells you they wish they were dead, take them seriously. Speak to them; find out exactly what they’re thinking. Don’t be afraid to ask questions.
Being open – and pragmatic – about suicidal thoughts might just save your child’s life.
You’re stronger than you think you are
As the wise man, Kevin Bacon once said, you’re only ever as happy as your least happy child.
Like most parents, I’ve always assumed I would simply fall apart if something terrible happened to one of my children. In fact, this didn’t happen (well, it hasn’t happened so far…).
Yes, it’s been a terrible year. Over a few months, we watched our daughter change from a happy, confident, cheeky girl to someone who was so ill she was no longer able to speak or dress herself or do any of the basic tasks we take for granted.
We didn’t understand what was happening to our child. And we weren’t alone. The mental health experts working with Nora were also at a loss. We were repeatedly told they had never encountered a child with such severe symptoms. She was so ill, it took a team of mental health experts two months to agree the best way to treat her.
It was the worst of times for our family. But, somehow, we got through it. As Nora gets better, we are stronger as a family than we’ve ever been.
For that, and so much else, I am immensely grateful.
Rant alert: if you’d rather not listen to me having a good old rant, stop reading now.
When your child is too ill to go to school, your local authority is obliged to offer you alternative access to education. In Nora’s case, she gets ten hours of online learning each week, and two one-to-one hour-long sessions with a tutor .
Ten hours of online learning probably doesn’t sound like a lot, but it’s a challenge for Nora. She is severely dyslexic so trying to concentrate on a screen-based lesson for two consecutive hours is exhausting. And she is still recovering from a debilitating illness, which means she gets tired very easily.
The pressure of having to log on for two hours a day has added to her general anxiety. Clearly, this isn’t ideal. Her CAMHS counsellor has told us that putting too much pressure on Nora at this stage could be detrimental to her recovery.
So, I contacted the learning provider. Our conversation went like this:
Learning Provider (LP):She really should try to log on to every class.
Me:Well, CAMHS have strongly advised this isn’t a good idea and I need to ease her back into learning slowly.
LP (slightly dismissive):Oh, CAMHS always say that.
LP:They only care about the child’s mental health.
That was yesterday. I’m still speechless. Surely Nora’s mental health is all that matters?
To add insult to injury, I’ve since found out that Nora’s usual English class has been cancelled for the next two weeks and she will have to join an older class. I only realised this when we tried to access her usual class and it wasn’t available. When I questioned why this was, the provider told me that Nora’s English teacher is on jury service so Nora’s class will have to join an older class for the next two weeks.
This morning, I emailed the provider to ask how it will benefit Nora to spend two weeks in a class designed for older students, discussing a book she’s never read. So far, I haven’t had a reply.
The whole experience has left me pretty dispirited. It’s made me question whether the alternative support we’re getting is less about Nora’s education and more about ticking boxes.
Is the number of times Nora logs on to an online class – even one not aimed at her age or ability – really more important than her mental health? Apparently some people think it is.
It’s four and a half months since Nora was diagnosed with severe depression and anxiety. Without doubt, these have been the worst four months of my life.
Despite being terribly ill, Nora is now making a remarkable recovery. I have already written about this so won’t bore you again with the details.
At her very worst, I always knew Nora would get better. She is, without question, the most single-minded and determined person I know. It’s not just me who thinks this. Her father, brother and CAMHS care workers are all in agreement. She is a force to be reckoned with.
Caring for a child with a mental illness is scary and lonely. You will need as much help as you can get. Here are some of the things that helped me through the worst of times. They may not all be relevant for you, but one or two might help you along the way.
Friends and family
I am immensely proud of how our little family pulled through this together. Nora’s brother, four years older than her, has done so much to help and support her. From spending time with her when she was at her very worst, to cracking jokes and having fun with her as she recovers, he has been the best big brother she could ask for.
Miraculously, my husband and I seem to have dragged ouR way through this relatively unscathed. We really dug in and got each other through each day. We were there for each other and our kids when we all needed it most.
As for my friends, I have simply been stunned by people’s kindness. Many of you will be reading this and I want you to know your help, love and friendship were never more appreciated or more needed.
Soon after Nora fell ill, I discovered a singer I hadn’t heard of before. Her name is Camille O’Sullivan, and her music got me through some of my darkest moments. One song, in particular, resonated with me. I still can’t listen to it without weeping. It is raw and powerful and full of love.
It’s important you know this. I’ve spoken with parents who are put off getting help after one bad experience. Please don’t let that happen. Your child has an illness that requires professional help. Don’t fool yourself into thinking you can do this alone. Your child deserves more than that.
I know getting help isn’t always easy. In a previous post, I’ve listed some of the ways you can push to get the right help for your child. I hope it helps.
Having a care plan and sticking to it
A key part of your child’s recovery is their care plan. This is a schedule, put together by your child’s mental health team, that your child has to follow in the early days of their illness.
In Nora’s case, her care plan consisted of carrying out basic tasks such as getting out of bed each day, getting herself dressed and eating a certain amount of food. If this seems extremely simple, it’s not. When someone is severely depressed, carrying out even the most basic tasks can seem too daunting.
Having a bespoke care plan was hugely important. It gave Nora – and me – a structure for getting through each day. Over time, it gave her confidence to believe she could carry out basic tasks that she’d thought were too difficult.
Reading about other people’s experiences of depression
I read – and reread – Matt Haig’s brilliant Reasons to Stay Alive. I read blogs detailing people’s experiences of depression and mental illness. I learned as much as I could about Nora’s illness.
I knew almost nothing about depression before Nora fell ill. I’m still no expert but I’ve learned enough to – hopefully – support her as best I can.
The resources section of this blog lists all the books and online resources I found most useful.
I am not a religious person. When I talk about faith in this context I mean faith in my daughter. I never once, not even at her very worst, believed Nora wouldn’t get better.
This wasn’t always easy.
Several times, we were told by mental health professionals they had never encountered a child of Nora’s age with such severe symptoms. At one point, her CAMHS counsellor told me they were ‘flummoxed’.
It took over a month for CAMHS to put a care plan in place for Nora. They simply didn’t know how to treat her when she was first referred to them.
Yet somehow, through all of this, I always believed she would be well again.
Of course, I don’t know what the future holds. I’m not naïve. I know that depression may be part of her life forever. I know she may get sick again. If that happens, I will hold onto the faith I have now.
Because I believe in my daughter. I believe in her strength and her determination. More than anything, I believe she deserves to live an incredible life, with or without ongoing mental health issues.
There’s a widely accepted belief among many parents that giving anti-depressants to a child is ‘a very bad thing’. Before Nora fell ill, I was one of ‘those’ parents.
I believed that the medical profession routinely over-prescribed anti-depressants to children who ‘didn’t really need them’. I believed this on the basis of no real evidence. I believed it because other parents believed it. I believed it because I read opinion pieces in broadsheet newspapers about the damaging effects of proscribing anti-depressants to young people.
I believed it because I was incredibly ignorant about mental health problems and the devastating effects they can have on young people and their families.
The purpose of this post isn’t to debate the pros and cons of giving anti-depressants to young people. I’ve had my fair share of negative reactions from other parents who ‘don’t think it’s wise’ for my child (yep, my child not theirs) to be taking drugs that can help her get better again. Quite frankly, I’m tired of trying to explain to people that if Nora wasn’t taking anti-depressants, she would very possibly be dead.
If you’re a parent wondering whether or not anti-depressants are the right choice for you child, I can’t help you make that choice. But I can tell you this: I absolutely believe that anti-depressants saved my daughter’s life.
This post is for parents who made the same choice we did.
Based my experiences with Nora, here are the five things I wish I’d known earlier. If I had, it would have saved me a whole lot of heartache and far too many hours searching the internet for answers.
They take time to work
When Nora was first prescribed anti-depressants we had unrealistic expectations of how quickly they would work. We watched her, day after day, for any signs of improvement. For the longest time, nothing changed.
It doesn’t help that it took time to get her dosage right (see below), but the waiting really was tough.
Nora’s been taking anti-depressants for five months now. During that time, her recovery has been remarkable. She’s still not ‘better’, but she is significantly different from the mute, withdrawn, suicidal child she was a few short months ago.
I know that her recovery isn’t only down to the anti-depressants, but they’ve certainly helped.
So, if you and your child are at the start of your journey with anti-depressants, hang on in there. It takes time, but the wait really is worth it.
You may not get the dosage right first time
Because mental health is so complicated, and children’s brains are still developing, finding the right level of the right kind of anti-depressant for a child can take time.
Nora is taking an SSRI (selective serotonin reuptake inhibitor) anti-depressant called Fluoxetine (commonly known as Prozac). We had to try the drug at three different levels before we saw any effects. Because the side effects are so horrible in kids, increasing the level of medication has to be done gradually.
Again, all of this takes time. Again, it’s worth hanging in if you can.
The side effects are horrible, but they pass quickly
One of the (very valid) reasons parents are reluctant to give anti-depressants to their children is because of the side effects. They are horrific.
Nora’s depression meant she was extremely suicidal and unable to eat. She tried to kill herself several times. She was self-harming. She lost so much weight we thought she might have be fed through a tube.
Two of the most common side effects of Fluoxetine in children are increased suicidal thoughts and nausea. If your child is already suicidal, and already struggling to eat enough food to survive, you really don’t want her taking something that’s going to make this worse.
Did we see any side effects? Yes. Nora threw up for several nights after she first started taking Fluoxetine. And she was extremely suicidal (although, if I’m honest, I couldn’t say whether this was because of the drugs or part of her general illness).
However, the side effects pass. In Nora’s case, they passed relatively quickly (I would say they had disappeared completely after three weeks).
They won’t ‘cure’ your child but they will help
I really wish I’d known this earlier. Somehow, I believed anti-depressants would miraculously ‘cure’ my daughter. I read other people’s experiences of taking anti-depressants. They spoke about waking one morning and feeling as if a cloud had lifted from them. I thought this was how it would be for Nora, but this wasn’t our experience.
Nora’s recovery was gradual. Day by day, we started to notice small improvements. Taken together, those improvements are dramatic. But they are still only part of her recovery.
The really key part from now on will be the work she does with her CAMHS counsellor, helping her to manage her feelings and build the resilience she needs to navigate her way through her teenage years.
When they start to work, it’s the best thing ever
This is why you have to hang in there when your child starts taking anti-depressants. For all the reasons listed above, it’s not easy. But it’s worth it.
My child was so very ill. She had stopped talking. She wanted to die. She had developed psycho-motor retardation, a condition that slows down your thought processes and body movements.
Today, she is engaged with the world again. She can fall asleep without needing me to be with her. She speaks and laughs and cracks jokes with her brother. She sees her friends. We go swimming in the sea. She is alive and embracing life.
All of this means more than anything. My girl is coming back to me.
We chose to give Nora anti-depressants, exactly as we would choose to give her life saving medication if she had cancer or any other illness. I am very glad we did.
I have just watched this deeply moving video and wanted to share it. This poor woman expresses the deep sadness and feelings of helplessness a parent feels when their child tells them they want to die.
If you’re the parent of a child with severe depression, you quickly learn that you will spend time in and out of hospital. There will be occasions when either you or your child know that hospital is the only safe place to be right now.
Nights spent in hospital with your sick child are no fun. If you’re lucky, you’ll get a bed to sleep in. Otherwise it’s a chair beside your child’s bed. If your child is a suicide risk, you have to spend the night sleeping by the nurse’s station. Sorry, did I say sleeping? I meant ‘trying to get some sleep, despite the bright lights and the constant noise’.
After one of these nights, Nora and I were waiting to be seen by CAMHS (Child and Adolescent Mental Health Services). We were exhausted. By now, Nora was very sick indeed. She was extremely suicidal, withdrawn and desperately in need of help.
Midway through the morning, a woman approached Nora’s bed and introduced herself as the ‘community paediatrician’. I had never met this woman before. Neither had Nora.
Here’s what happened next
Community Paediatrician (CP) shouts at Nora: ‘Hello, how are you this morning?’
When Nora doesn’t respond, CP looks at me: ‘Have you considered…?’ Her voice trails off as she whispers the final part of her question.
Assuming she’s going to suggest something helpful, I ask her to repeat her question.
She raises her voice, shouting again to make sure I hear this time: ‘Autism,’ she roars. ‘Have you considered your daughter might be autistic?’
Me: ‘Um… no actually. She’s under the care of a psychiatrist and her diagnosis is anxiety and depression.’
CP, holding her hand up to prevent me saying anything else: ‘It’s autism. I see this in young girls all the time. They do okay in primary school by pretending. But then they start secondary school and their strategies don’t work. Their autism becomes apparent. You need to get her screened for autism. I will speak to CAMHS about this.’
Me: ‘She’s been seeing a psychiatrist for two months. Wouldn’t her psychiatrist have mentioned it if she thought Nora was autistic?’
CP: ‘They always miss it. Me? I see this all the time. You need to get her screened for autism.’
I glance at Nora, and see she’s listening intently to this conversation. I want to say something. I want to tell her not to worry, I’m sure she isn’t autistic. But I can’t because, in my befuddled state, I think this person – who is a doctor, after all – must know what she’s talking about.
When I look up, the doctor has already left. Nora and I are alone. Only we’re not. Because the nurses in this children’s ward are incredible. Without me realising it, one of the nurses – Sandy – has appeared. She takes one look at my face and calls for another nurse – Joyce – to come in.
Sandy: ‘Nora’s mum, you come with me. Joyce will stay here with Nora.’
Sandy takes me outside. We walk around the hospital grounds.
I am not making much sense. I keep saying things like: ‘I don’t understand. Can someone suddenly become autistic? That’s not how it works, is it? If she was autistic, wouldn’t I have realised it before now?’
All the while I’m muttering like this, my mind is going back over the last eleven years of Nora’s life, looking for signs my daughter is on the spectrum. I can’t find anything specific, but then I think maybe – to a greater or lesser degree – we’re all somewhere on the spectrum.
When I say this to Sandy, she smiles and says: ‘You’re absolutely right.’
‘But she has lots of friends,’ I say. ‘And she’s really socially aware. Too socially aware. That’s what got her into this mess in the first place. I mean, surely I would have guessed something was wrong?’
Sandy gives me a sympathetic hug and asks: ‘When was she first diagnosed with autism?’
Me: ‘Oh just now. Well, not diagnosed but the doctor thinks that’s what’s wrong with her.’
As I say this, for the first time I start to wonder how someone who has never met my daughter before could reach such a conclusion so quickly.
Meanwhile, Sandy takes one of my hands in hers, squeezes it and says: ‘Ah. I probably shouldn’t say this, but I’d take what that doctor tells you with a pinch of salt. You see, she doesn’t believe in mental illness.’
She doesn’t believe in mental illness
I replay these words inside my head, looking for the joke. Then I realise, Sandy isn’t joking. The paediatrician – a medically trained doctor whose job it is to take care of sick children like my daughter – doesn’t believe in mental illness.
That doctor wasn’t speaking to me as a medical expert. Instead, she was choosing to share her uninformed, and unforgivably ignorant opinion on why some adolescent girls ‘appear’ to have mental health problems.
Now, you might be reading this and wondering why I’m sharing this story with you? Well, I’m NOT sharing it with you because I think a diagnosis of autism is ‘worse’ than one of severe depression. I don’t know what it’s like to have an autistic child, so I cannot make that comparison.
Nor do I think the doctor was wrong for wanting to explore autism as a possible cause of my daughter’s symptoms.
This doctor had never met me or my daughter before. She had no right – none, whatsoever – to assume it was okay to discuss Nora’s health in front of her the way she did. One of the key things you learn when your child is depressed is the importance of creating a safe environment which reduces your child’s anxiety levels.
Telling a depressed child she quite likely has other health problems is not a very clever way of reducing her anxiety.
Whether they like it or not, doctors are part of a profession which treats all aspects of people’s health – mental, as well as physical. It is simply unforgivable to ‘choose’ not to believe in some illnesses.
Would we trust a doctor who ‘didn’t believe in cancer’? I don’t think so.