Lack of mental health services in the UK.

 

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Fake smiles. For years Emma did nothing but hide, scream and self-harm but she would smile beautifully for the camera.

 

Below is parts of a letter I wrote to a local councillor in the Summer of last year regarding the complete lack of mental health services for children in many parts of the UK:

“My eldest daughter, Emma, is eight-years-old and diagnosed with autism (Asperger’s). She also struggles with anxiety, insomnia and many intense phobias. We first made contact with our GP about our concerns regarding Emma’s behaviour and emotional health in 2013 (when she was four). It took until September 2016 (when Emma was seven-years-old) to receive her diagnosis. During those three years I battled constantly to get some sort of support for Emma to help her deal with her powerful emotions which often led to extreme outbursts where she would cry and self-harm for hours, screaming at me to kill her and eventually falling into a catatonic state where she would lie prone on the floor not talking or moving. I approached CAMHS numerous times but was always knocked back. First I was told they wouldn’t help because they believed she has a neuro-developmental delay and they don’t deal with children with them, this was before her diagnosis and the paediatric psychologist told us that without a diagnosis they could not get involved either. We were left feeling as though we were trapped in Limbo screaming for help that never came. When I contested CAMHS’s decision to not provide support for my daughter I was told (amongst other things) that they “didn’t have a magic wand” and that “I seemed like a competent mother and [they were] sure I could cope” (this was during a phone call where I explained how my five-year-old was asking me to tie rope around her neck to kill her).

When we received Emma’s diagnosis, ten months ago, we rejoiced. Finally, here was the diagnosis we had been waiting for, now Emma would get the help she so desperately needed! Not so. Around Christmas, we believed Emma was coping well and the paediatric psychologist discharged her from his clinic (having provided a diagnosis but no psychological help or support at all) promising me that if we ever felt we needed support again I only needed to call or get a referral from the GP and Emma would be seen again. In January I noticed self-harm marks at the tops of Emma’s arms, on her tummy and on her thighs. When I questioned her she admitted that she’d been hiding her anxiety from me and self-harming in private. Worried, I took her to the GP and asked for a referral back to the psychologist’s clinic. I also called CAMHS once again and asked if they’d take her on, the answer was no, she has autism, they can’t help. We waited months and finally, in April, a letter arrived from the paediatric psychologist. I recognised the letter the moment it landed on the doormat from the stamp on the envelope. My heart skipped a beat as I snatched it up and opened it, excited to see when my little girl would finally be offered the help we’d been begging for for four years. Reading the letter crushed me: the psychologist would not help Emma; as she was self-harming he felt CAMHS would be more appropriate. We were back in Limbo. Refusing to give up on my little girl I called the psychologist’s secretary myself and begged her to at least take my number and pass my details onto the doctor so that I could explain our situation, she refused. Undeterred, I called CAMHS again, it took them a while to get back to me but finally, in May, they called and said they would see her! In June I took her to her first appointment at CAMHS. The meeting was a positive one. The doctor there seemed annoyed by how we’d been treated and promised that CAMHS would provide occupational therapy (OT) for Emma and that he would also contact the paediatric psychologist for me as he felt that she needed an autism specialist working alongside CAMHS if the OT was to work. Fast forward to July and, following a meeting at school which the CAMHS doctor attended (and hinted heavily that he would be withdrawing the help from CAMHS), a letter arrives through my door discharging Emma from CAMHS and snatching away the tiny glimmer of hope they had given us. The promised OT never materialised and I never heard anything from the paediatric psychologist regarding CAMHS contacting him. They told me to try a charity for support and to try the paediatric psychologist again myself. The charity informed me that they no longer operate in my area so they could not be of assistance. In tears I called the paediatric psychologist’s secretary again, she was icy. She told me that he would not help in cases where there was self-harm, telling me to try CAMHS. I explained how CAMHS had snubbed us and pleaded with her to just take my phone number, telling her how the psychologist had promised that by discharging us, he was not locking the door on us but, as she had done in April, she refused. I called CAMHS once again and begged them to take Emma back on. Over the next few days, I called three more times and eventually, they agreed to see me without her. I have an appointment to see the same doctor as before again on August 1st. I can’t imagine it will go well. (My predictions were correct, the meeting in August did not go well. I went in ready for a fight and I fought and argued as much as I could but the CAMHS doctor was no use what-so-ever, simply passing the buck onto the paediatric psychologist who, in turn, -I had them call each other to discuss who should take Emma’s case while I waited in the office- passed the buck back to CAMHS. )

I am tired of fighting these services. My little girl is crying out for help and I’m at her side, desperately trying to get somebody to notice her before it’s too late. My daughter is getting older and stronger. She is becoming more inventive with her self-harm and it’s terrifying. When she was little she only punched, scratched and bit herself but now she runs into roads, ties ligatures around her neck, tries to hang herself and tries to cut herself with scissors. Life for an eight-year-old shouldn’t be like this. She should believe that she in the centre of the universe and should care only about toys, books and television. Instead, she is battling demons in her head and, what’s worse, she is battling them alone because none of the services who should care about her do.

I can’t watch her slip through the cracks. For all her problems Emma is a vivacious, intelligent and hilarious child. I know that if she is allowed to grow up she will change the world for the better.”

I wrote that over a year ago and still, Emma has had absolutely no help from any mental health services. Luckily for us, I have been able to pull her out of school to home-educate her and am using my own personal experience and knowledge of psychology and mental health issues to employ a sort of CBT to help change her thinking and improve her emotional health. For the most part, it’s working well and reading that back I’m thrilled to see how far Emma has come since we pulled her out of school, started using the techniques described in my previous post and worked to improve our own understanding of her behaviours.  But that doesn’t make it right, we never should have had to do that and for many families home-education and employing your own brand of CBT is simply not an option so they are left with a child screaming for help and never getting anywhere.

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Now that she’s coping better, Emma shows her true emotions and smiles for the camera are genuine!
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Taking off the Mask.

Growing up, many autistics, particularly girls, quickly learn to mask their autistic behaviours in order to fit in with societal norms and to not stand out. This masking is usually detrimental to their mental health. Harmful therapies such as ABA teach masking and try to pass it off as a “cure” without any regard for the mental wellbeing of the autistic individual.

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I can’t credit this picture because it came from an unknown source. If you know the person who made it, please tag them in this post (and tell them to take out the extra apostrophe; it’s driving me mad!).

When I was a child I was lucky enough to never be subjected to the horrors of ABA, yet I still masked my autistic behaviours for fear of bullying from my peers or being sent to live in an institution (a fear I made up in my own head after watching Rain Man). I learned to only stim in the privacy of my own bedroom (my favourite way to stim was -and still is- to flick and twiddle my hair for hours); I could never bring myself to make eye contact, it induced far too much anxiety, but I did learn to carefully watch a person’s mouth and nose while they were talking in the hopes that it would give the appearance of eye-contact;  I was mostly mute at school unless I was alone with my friends because I always felt that my voice sounded “odd” compared to my peers so I was self-conscious of talking and besides, I wasn’t so stupid that I missed the rolled eyes and sniggers when I tried to talk about things that interested me, I decided that it was best to just keep quiet and pass myself off as shy.

As I grew up I masked more and more, trying my best to speak about subjects that seemed to interest other people and to appear as “normal” (read: neurotypical) as possible. When I started college I decided I wanted to try and increase my social circle so I stopped passing myself off as shy and tried to make friends with people. I found it surprisingly easy to slip into one role and then another, I had many large groups of friends but I was never truly myself when I was with them. I would hang around with one group of people at morning break, acting and talking like they did, then sit with an entirely different group at lunch, again taking on their values and social habits as my own, before walking home with a completely new bunch of people and imitating them as I went.

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Having such a mixed social life led to some interesting fashion choices. This is me aged 16, if you’d asked me back then I would have told you I was a “goth”! (I think it’s safe to say, I wasn’t!)

I’ve since found out that this social mimicry is called being a social chameleon and is relatively common amongst autistic teenagers. I don’t think I was fully aware that I was copying the people I spent my time with, I truly believed that each personality I tried on was really me. This had a massive knock-on effect on my mental health and today, at almost 30 years old, I am still struggling to figure out exactly who I am and whether or not the things I like are really things I like or if I just think I take pleasure in them because the people I spend time with enjoy them. It’s a very confusing thing to not really know yourself and causes me a great deal of upset and anxiety. I regularly feel like I really don’t belong in this world.

After having my daughter and realising that she was autistic I began to notice how much I masked and I could see how damaging to my health it was: I took stock of my anxiety, crippling depression and insomnia and realised that all of them, to an extent, could be credited to me constantly pretending to be somebody I wasn’t, just to make the people around me comfortable. I didn’t want my daughter growing up thinking that masking was the norm so I began slowly taking off the mask that I had spent my entire life perfecting. It’s been four years since I made a conscious effort to stop masking, and I still find myself doing it more often than not. It turns out being yourself after a lifetime of pretending to be somebody else is not easy!

 

Hidden Autistics.

Until very recently, autism was a rarely heard of diagnosis, believed to be an exclusively childhood disorder, primarily found in boys. Even as understanding of autism improves and more people are being diagnosed, myths remain. Many still believe that autistic people are unempathetic, it is still widely thought of as an extreme male brain disorder and, indeed, the 16:1 male:female diagnosis rates suggested by some studies  would certainly seem to back these claims, however, as thousands of autistic women know, those studies do not reflect the truth. There are many autistic women, but we do not meet the stereotypical autism profile so, often, we are left undiagnosed. (I do not currently wish to get into the male/female autism differences but I have written an article in a free online magazine which you can find by clicking the link above and turning to page 16.)

I am one of many undiagnosed autistic women. I first read about autism in a psychology textbook when I was eight-years-old and I was amazed by how much it sounded like me, with one crucial difference: according to the text, autistics lack empathy. I knew that certainly wasn’t the case for me, I feel other people’s emotions to such a degree that a story told to me in passing over a decade ago, can still keep me up at night, feeling anguish for that person. I’ve never been great at expressing the concern I feel though and perhaps, to the untrained eye, that could look like a lack of empathy. For example, eight years ago, a colleague of mine turned up at my house, sat on my sofa and burst into tears because her ex was being horrible to her and her children. It was a horrific moment, I felt so badly for her but had no idea how to communicate that feeling: should I hug her? Pat her shoulder? Tell her it would be okay? Insult the man I’d never met? Offer her a cup of tea?! the options seemed limitless and, unable to work out the correct course of action, I simply stood, staring at her in abject horror until she pulled herself together and left. She didn’t speak to me much after that. I expect she thought I was a  horrible person but it still hurts me and makes my heart do that weird leaping painful thing when I think about how upset she was that day and how I couldn’t make it better for her.

As I got older and learned more about autism, I identified more and more with the diagnosis, but the only popular portrayal of autism I had seen was Rain Man and I had visions of being locked away from my family if I was discovered to be autistic so I kept my mouth shut and my head down; desperately masking and trying to “fit in” to a world that never quite seemed made for me. At school I would watch, with interest, groups of children laughing and playing easily together, I always felt like a visitor from another world, observing the strange fauna of this little blue planet but not a part of it. Most of the time I was a model child: weirdly obedient, always quiet (unless you got me started on a subject of interest and then you couldn’t shut me up!), always did my homework, ate my vegetables and never rebelled; even as a teenager. I was just boring, quiet, little Hayley who liked collecting bugs and hiding in trees to read my books. My best friends, besides my sister, were my border collie, my budgie and my snake.

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Young me at my happiest: cuddling Sammie the garter snake.

I, as many autistic girls did back then, flew under the radar. Some autistic girls were labelled “violent” or “difficult” but some, like me, were just too quiet to be noticed. I was like a perfect little robot who never raised any suspicions because my behaviour never caused an issue for my parents or teachers and I never spoke up about how much I was struggling socially for fear of reprisal.

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Me – age 17, teenage rebellion clearly in full swing(!)

It wasn’t until I was in my twenties and seeking a diagnosis for my eldest child that I really began to explore my own autism in depth. I could see so much of myself in my daughter except where I’m introverted and suffer primarily from shutdowns when I get overwhelmed, she is extroverted and suffers from big loud meltdowns when she gets overwhelmed. Her being extroverted means that her autistic behaviours stand out much more and, with autism being more understood and recognised these days, we were able to get her diagnosed. Although even that was no easy task, it took four years of continuous fighting and nearly completely destroyed my mental health. My psychiatric health was a total mess by the time my daughter was getting the support she needed and I’ve no wish to go through all that again just so I can have my own diagnosis, especially since I’m not entirely sure what benefit gaining a diagnosis this late in life could bring me. At least my daughter being diagnosed now means she won’t go through the anguish I did through my childhood and early twenties, believing she’s weird or subnormal when she doesn’t fit it, she will know it’s just because of her neurodiversity and hopefully will be able to seek out other neurodiverse people who will understand her. It also means that if she ever goes back into a school or college, they will understand her behaviours better and be able to support her. I’m past all that now and, over the years, have developed my own coping mechanisms for when things get too much.

Reactions to the undiagnosed autistic.

There is a strange contrast between the reactions of neurotypical people and autistic people when you tell them you’re an undiagnosed/self-diagnosed autistic.  Neurotypical people who have had no autism experience often get somehow defensive and sometimes even cross, assuming you’ve come to the conclusion of your own neurodiversity after ten minutes browsing the internet and not from a lifetime of feeling different, speaking to people, meeting autistics and (in my case) seeing your own children go down the diagnostic pathway. They often throw their hands up and yell that everything is pathologised “these days”, totally ignorant to the thousands of hoops that autistic people and their parents/advocates must jump through in order to obtain a diagnosis.

Autistic adults know how it is to live your whole life never quite fitting in but not receiving a diagnosis because you’re female or because autism wasn’t recognised in your area when you were a child. They understand the struggle of gaining a diagnosis on the NHS and many autistic adults simply accept diagnosed and undiagnosed autistics into their flock. Most support groups on Facebook actually have the tagline “Self-diagnosed welcome” just to ensure that people who, for one reason or another, haven’t got a diagnosis know they can join and feel included. Being in these groups often gives people the confidence to seek their own diagnosis if they feel it will help them and their friends and families better understand them, others are happy to remain undiagnosed, content to finally have found a safe space where, at last, they feel they fit in.

A Sort of Imposter Syndrome

Of course, being undiagnosed often makes me feel like an imposter in the autistic community. Even though most of my autistic peers are happy knowing my undiagnosed status and don’t judge me for not having a piece of paper confirming my neurodiversity, the scorn of neurotypical people can hurt a lot and leave me feeling like maybe I am just, as they suggest, pathologising typical behaviours. It goes without saying that one should always be careful when trying to diagnose oneself and that online tests are hardly comparable to official medical tests but there are some great tools and tests online for people to take if they feel they may be autistic (a quick Google search for “autism test” turns up around 150,000,000 results). Perhaps these tests could be used as an aid to take with you to the GP if you do go to seek a diagnosis. I have taken many such tests over the years when I’ve been feeling like an imposter and they always flag me as having “moderate to strong” Asperger’s or autism traits and suggest I see my GP for an official diagnosis. I do think I will seek a diagnosis one day, but for now, I know that I am not mentally up to the challenge so I will remain undiagnosed.

Understanding Behaviours.

  The biggest problem a lot of parents of neurodiverse children have isn’t truly their child, but that they can’t understand their child’s behaviours or where they come from because they simply cannot see the world from their point of view. (Ironic really that so many autistic people are accused of having “mindblindness” when often their neurotypical caregivers experience that same mindblindness regarding their autistic children.)  I have three children, my eldest daughter is nine and is diagnosed with Asperger’s. She is essentially a little me, I can easily empathise with her and see where all her behaviours are coming from, why she is displaying those behaviours and how, if necessary, to help her navigate her emotions and behaviours. My seven-year-old son (under assessment for PDA and ADHD) is a different kettle of fish altogether, I often find myself looking at him and thinking, “Wow! Where did that come from?!”

Recently I was speaking to an autistic (naturally!) expert in autism and he gave me some wonderful tips for helping me understand my son’s more baffling (to me anyway!) behaviours. I will share those tips in this blog in the hopes that they will help other parents who are left scratching their heads over their children’s behaviours.

Understanding the child’s point of view:

The most important tool in any parenting toolkit is probably empathy. Empathy is what helps us soothe a screaming baby at 3am, even when we’re exhausted ourselves; it’s what makes us cuddle a teething toddler instead of getting cross with their endless noise-making; it makes us run to our children when they fall and helps us to understand how a teenager is feeling when they have their heart broken for the first time. It is undeniably a very important part of human bonding, but what happens when a child and parent have very different worldviews? This upsets empathy and makes it very hard for parents to see where the child’s behaviour is coming from and so, a behaviour borne of anxiety will be called “naughty” or “stubborn” and parent and child end up locking horns, seemingly trapped in what the parent sees as an endless “power struggle” and the child sees as “unfair”.

In order to understand your children’s behaviour, you need to see the world from their perspective. An example from my own life of what I found baffling behaviour is my son ignoring me and then screaming at me, hitting himself and kicking furniture when I tell him to come and get his dinner.  To help me understand what was causing this behaviour I drew an iceberg with the observable behaviour written in the tip of the iceberg, above the water. Below the water, in the body of the iceberg, I wrote all the thoughts and feelings that might be occurring “below the surface” of my son and around the edge of the iceberg, in the water, I wrote ways that I could help him navigate these feelings to make dinnertime a little less stressful for him (and us!). Dylan's iceberg profile

Using this model has really helped me see why my son gets so upset when I ask him to come for dinner and has made it possible for me to change our routine in order to make life easier for our entire family. I have used this model several times to understand a whole host of behaviours that my son displays which I previously had trouble understanding and have found it incredibly useful at gaining deeper insight into what is going on in his mind.

Giving the child the tools to understand and regulate their own emotions:

It goes without saying that the role of the parent in helping children regulate their emotions is incredibly important but it is also essential that children learn to identify their own emotions and know how to react to these feelings in an effective way by themselves. For neurodiverse children, this self-awareness and control can be a little harder to attain than for neurotypical children so it is vital that the parent provides the child with all the necessary tools to do this.

I have spoken about emotions and effective ways to deal with them with my children from the moment they were born, I have always told them how I am feeling and how I am managing those emotions as most children learn best by mimicking what they observe.

My eldest daughter is very good at recognising how she is feeling and always has been. In her bedroom, she has a tent with nothing at all in it so she can go and sit in there when she is feeling overwhelmed by too much sensory input. She also has a “Sensory Basket” which contains lots of things to feel, chew, smell, listen to and look at, including fidget toys etc. so that when she is in a sensory seeking mood she can use those toys to fulfil her needs.

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A selection of sensory items, fidget toys and music boxes from Emma’s Sensory Basket.

She has another box in her bedroom called the Happiness Box, which contains laminated (so they can’t be destroyed when she’s angry or upset) photographs of her favourite things, people, places and biggest achievements; drawings; certificates; a few small souvenirs from special trips and holidays; a music box which plays her favourite tune and other small items to remind her that she is loved and important when her depressed or anxious brain is telling her otherwise.

She also has ear defenders and drawing/art supplies dotted around the house as she finds hiding away with ear defenders on creating pictures and books a great way to handle anxiety attacks.

My son finds recognising and dealing with his emotions a little harder than my daughter does and needs a fair amount of support to identify what he is feeling, why he is feeling it and what he can do to change it.

In the iceberg diagram above I mention the “I feel; I choose” board, this is a tool which has really helped my son to understand himself and regulate his own emotional response to situations. He usually needs reminding that it is there when he starts to feel intense emotions but once he’s been reminded of it, he finds it fairly easy to change the labels to the appropriate emotion and action.

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Each card made for the board is laminated with a Velcro sticker on the back so it can be added to or removed from the board as often as Dylan needs and all the emotion cards have a simple picture and single word to describe different feelings while the action cards mostly have pictures of real things from his life (picture of his favourite teddy, his trampoline etc.) to help him quickly identify what may help him.

My youngest daughter is only three, pictured below is the most useful tool she has for recognising and regulating emotions:

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Daniel Tiger.

 

Happier home:

With good emotional understanding from both the parent and child, a happier home can be created and obstacles overcome. It is taking me a long time to recognise why my son behaves the way he does but I like to think that we are getting there slowly and hopefully one day I will be able to have the calm and happy home I dream of!