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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Helping a child with anxiety.

My eldest child, Emma (nine-years-old), had her first anxiety attack when she was just four-years-old. At the time we didn’t know it was an anxiety attack but she’s had many more since then and we now know that that’s what it was. We had spent a lovely day at the park collecting conkers for an arts and crafts activity when she suddenly started feeling dizzy and complaining that she felt sick. She went very pale and started to shake so we took her home where she sat, subdued, on the sofa refusing to move, talk or eat. By that evening she was back to her old self again. The same thing happened again a few days later…and then again and again and again…

 

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A photo of Emma playing shortly after her first anxiety attack. Even though she’s smiling, you can see the exhaustion in her eyes.

 

Emma was very interested in me writing this blog and wanted to help out by explaining how she feels when she has an anxiety attack. She has told me in the past that it makes her brain feel “fizzy” and as if she has no control over it or her emotions. Today she told me that when she is at the start of an anxiety attack it “feels like my brain is laughing at me and calling me fat and ugly. It feels really horrible and bad; like I don’t know what’s happening. Sometimes it feels like my brain is big and screaming and swearing at me.”

Over the years, with the help of Emma herself, others who suffer from anxiety or help those who suffer from it and advice from doctors and other healthcare professionals we have devised a number of ways to help Emma deal with her anxiety and I’m going to write about a few of them in the hopes that it may help other families who are just learning about anxiety.

The most important step in helping Emma manage her anxiety was her recognising, for herself, when she was feeling anxious. This is no easy task for a child and it took her a long time to realise that when she felt sick it didn’t instantly mean “bug” or “food poisoning” but it could also mean “anxiety alert!”. Emma has emetophobia which means that an anxiety attack for her is a double whammy because it makes her feel sick, which makes her anxious, which makes her feel sick…it’s a rather depressing spiral.

Once we realised Emma had anxiety we bought her a book recommended by a parent on a Facebook page, the book is called Starving the Anxiety Gremlin and is a CBT workbook aimed at children to help them identify and overcome their anxiety. Emma has really enjoyed filling in her book and it’s helped her understand her anxiety a lot more. The book introduces the concept of an “anxiety gremlin”  to separate the anxiety from the child. This gremlin is “fed” by unhelpful behaviours such as self-harm but is starved when the anxious child seeks help from an adult or practices calming techniques when feeling anxious.  It’s a great book which explains the evolutionary purpose of anxiety and doesn’t encourage the child to suppress or hide their anxiety but to face and not allow it to assert dominance over their lives.  It helps the child feel in control of their own emotions and anxiety.

Now that Emma is better able to recognise an anxiety attack before it really begins she is able to tell us that she’s feeling anxious (she uses a codeword “Lobster” to tell us she’s feeling anxious because saying the word “anxiety” makes her feel anxious!) and then we can help her calm down or encourage her to calm herself. Once Emma says, “Lobster” to me, I ask her if she needs my help. Sometimes she will say no and take herself off with her ear-defenders and blanket to hide in her tent with her sensory box or to do some drawing.  Other times she will say yes and I’ll help her by giving her a tight cuddle, talking to her or just be sitting near her until she feels calm, whichever one she thinks will be most helpful.

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

Usually, after an anxiety attack, Emma feels exhausted and needs to be left alone to recharge her batteries. She often does this by drawing, she is a very talented artist and finds drawing very relaxing and soothing.

 

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Sharing some of Emma’s work here because she’s rightly very proud of her artwork!

Emma has attended relaxation classes aimed at children, we found a group called Relax Kids which ran the sessions and in these classes, she learned some wonderful coping mechanisms for when her anxiety is getting on top of her. They teach breathing techniques and other meditation exercises, as well as promoting good self-esteem and mental wellness. Emma’s favourite takeaway from these sessions is what she calls “cat breathing”. She arches her back and flexes her hands and feet like a cat and then relaxes as she takes a deep breath in and “purrs” as she breathes out. Sometimes while doing this she asks me to firmly stroke her head and back, sometimes she prefers to be left alone.

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Emma’s Anxiety Gremlin is called Spaghetti Arms.

Without the stress of school, Emma’s anxiety has decreased greatly all by itself but the techniques described above have also gone a long way towards helping Emma and now, although she still feels anxious fairly regularly, she very rarely self-harms or feels suicidal because of it. She is much more in control of her anxiety instead of it being the other way around and is able to deal with her emotions in a very healthy and mature way. When I see Emma battling her “anxiety gremlin” I am incredibly proud of her, she handles her emotions better than many adults!

 

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!

 

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!