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!

 

Why ABA is harmful and nobody ever “recovers” from autism.

Despite increased understanding and acceptance of autism, there are still people (mostly neurotypical) who push for a “cure”. Most people on the spectrum do not want a cure; they are happy being who they are, those who do want a cure often do because of a lifetime of being made to feel inadequate by the neurotypical people in their lives who profess to love them.

What is ABA?
ABA (or Applied Behaviour Analysis) uses positive reinforcement (and sometimes punishment) to reinforce what it sees as “good” behaviours, whilst eliminating “bad” behaviours. Advocates of it tote it as an autism “cure” or “treatment”.  They claim its use can bring “meaningful and positive change in behaviour.”

It is a very intensive “therapy” and often requires the “patient” (read “victim”) to undergo a gruelling 40-hours per week of “therapy” in order for it to work. For many people, alarm bells should be ringing loudly right now that any child should be expected to spend 40-hours per week going through intensive behaviour modification but, unfortunately, many parents believe the lies spread by advocates of ABA and certain “autism charities” and truly believe that they’re doing the right thing and that putting  their child through ABA is done out of pure love, in the hopes of transforming their poor, lost autistic child into a “real person”.

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I won’t name names, but ten points to the clever person who guesses which “charity” most advocates ABA?!

So, what’s the problem?

The largest problem is that these sessions do not cure autism at all, what they do, in fact, is teach the child to mask their autistic behaviour so that, to a neurotypical outsider, they appear to be magically cured of their “evil” autism. But these children are not “cured” or “doing fine”, they, like the proverbial swan, may appear to be gliding through life but beneath the surface they are paddling furiously, internally chanting horrible mantras such as, “calm hands!” to remind themselves not to stim lest the unseemly sight of hand-flapping upsets the delicate sensibilities of any unfortunate neurotypical people lingering nearby.

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The proverbial swan…maybe.

Hopefully you can hear the sarcasm dripping off many of the words used in the above text by my use of inverted commas but, if not, please let me clarify: autism is not evil, it is not some beast which snatches children away from their families in the middle of the night and it is certainly not a disease to be cured. Autism, like all neurodiversities, is merely a difference in the way an individual thinks and experiences the world. People with autism are not puzzles to be solved or burdens to their families; they are people who have every right to live as themselves without being forced to act differently just to avoid offending some person who can’t see the world from the perspective of anybody but neurotypical people.

Many autistic adults who were forced to go through ABA or other “behavioural therapies” as children have grown up with conditions such as PTSD as a direct result of ABA and being forced to mask.

I’ve been lucky enough to have very accepting, loving parents, so I was never subjected to the horrors of ABA. I’ve read about it though and have friends who have had their lives destroyed by it. In order to write this article, I have read through many articles, both by parents who think they can “cure” their child and by autistic adults who were put through ABA as children. Below I would like to address some of the issues raised in the things I have read.

But, autism is “bad”!

Seriously, I’ve seen this postulation posted in one way or another on many different forums and groups when I’ve tried to explain that autism just is what it is and, just like being neurotypical, it is neither good nor bad. The trouble is that people often confuse autism with the comorbid conditions that can go hand-in-hand with it (anxiety, depression, OCD and a plethora of sleep conditions, to name a few). The issue here is that many of these problems are a direct result of desperately trying to fit into a neurotypical world which is not friendly towards neurodiversity. Other comorbid conditions (sensory issues, gender dysphoria and so-called “learning difficulties”) wouldn’t seem so prominent if the world were more autism-friendly. Just as a deaf person need not feel disabled if only everybody could use sign-language, an autistic person need not have a hard time if the world was willing to make small compromises for them. To address sensory issues alone and how hard a place the world can be for autistic individuals, I will recount a story of a recent experience in our local bowling alley:

I had decided to take my children bowling, all three were very excited at the prospect of a fun day out.

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When we arrived at the alley, disaster struck. I had forgotten just how awful those places can be for a person who is sensory-avoidant as my eldest child and I are. Bright, flashing lights; nasty-sounding, flickering fluorescent lights; booming music; loud noises; strange smells: the place was awful! My eldest child had one go at bowling and couldn’t take any more. Her younger brother and sister were having a grand time though so leaving wasn’t really fair on them. I bought my daughter a drink from the bar and suggested she sat on the balcony, away from the lights and noise (or so we thought) while the younger children and I finished our game as quickly as we could. As we stepped onto the balcony my poor daughter who usually tries to mask in public (despite me reinforcing that she should always be herself and honest about her feelings) was on the verge of a very large meltdown, we stepped outside expecting relief from the sensory onslaught but, no, outside there were still flashing lights and booming music. I re-entered the alley and asked a member of staff if she would mind turning the music down outside, I explained my daughter’s situation and thought she would be happy to oblige as it was mid-week during term-time, we were the only family using the bowling alley at the time and my daughter was the only person sat outside. Unfortunately, the staff member was not so accommodating as I’d hoped and refused to turn the music off or down. I tried to argue but it was futile so I went to apologise to my other children and to tell them we would have to leave as by this point Emma had started to shutdown in order to avoid a meltdown and I knew that the short-term psychological damage from a shutdown could last a week or more. At this point, the staff member sauntered over and informed me that she would turn the music off, but only for a little while. The way she said it made me feel as though she was deeply put-out by turning off the music and was doing me a huge favour. I wondered if I should get on my hands and knees and kiss her toes(!)

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If the alley had simply turned off the music and lights for one session, my daughter need not have felt disabled that day. A shutdown could have been avoided and she would have been able to enjoy bowling with her family. Imagine a facility refusing to be wheelchair accessible, people would be up in arms! But because this is “just” autism, people assume the autistic individual should be able to “get over it” and cannot see how they are not being inclusive by having such a busy environment.

When I got home I wrote to the alley explaining what had occurred that day (I left out the staff member’s attitude as I didn’t want to get her in trouble) and asked them if they would please consider running autism-friendly sessions during their least busy period so that children like my daughter could enjoy their facilities. They failed to respond despite me sending another message a few weeks later. Please feel free to spam their Facebook page with pleas to change their mind. index

“No person has been cured of autism and regrets it!”

Hmmm…well, the lady who posted this (I won’t link her blog) is half right I suppose: no person has ever been cured of autism! Those who were forced to go through behaviour modification therapy have been left with a myriad of mental health issues, but, hey! At least they don’t make their non-autistic counterparts uncomfortable by stimming and at least they can talk without using echolalia, who cares if they’ve attempted suicide multiple times because of what they’ve been put through, they can look you in the eye and talk about the weather(!)

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“ABA is hard for me too! I hate seeing my child go through it but am doing it for their own good!”

This one is heartbreaking, these parents clearly love and care for their children very much, the suggestion that ABA is abusive is abhorrent to them, why would doctors suggest something harmful?! The problem is that many of the people who suggest ABA are not autistic and have never been subjected to it. ABA is taught in colleges and universities as a miracle cure and why should a doctor not believe what they are taught by their professor and why should a parent not believe what they are told by their doctor? This creates a vicious cycle of endless autistic people being put through harmful therapies under the name of progress with nobody really understanding what they’re doing wrong. ABA was first developed in the 1970s by Ivar Lovaas and Robert Koegel at UCLA, it was adapted from methods used by Dr Sidney W. Bijou in the 1960’s which he had formed using Skinner’s theories of operant conditioning. The reason I’m giving you this little history lesson is to point out that Skinner himself, who developed operant conditioning, eventually conceded that “punishment, unlike reinforcement, works to the disadvantage of both the punished organism and the punishing agency”.

Long story short, ABA does not work to “cure” anybody but can ultimately lead to the psychological destruction of the autistic individual. If you are a parent or carer, considering ABA for your loved one, I implore you to explore other options. Speak to autistic adults: both those who were put through ABA and those who were not; strive to understand your child more so you can see where behaviours you’re struggling with come from; look at other ways to help your child, including helping them to overcome any comorbid conditions (such as anxiety and depression) that may be affecting their behaviour and, above all, love them and empower them to be themselves and to be happy being themselves, don’t suppress their personality or coping mechanisms just to make other people comfortable.

 

We don’t need behaviour modification; we’re awesome!

 

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.

Living with hypersensitivity and hyposensitivity.

“No two autistic people are alike…” just as no two any people are alike. In my household of five, there are at least three autistic people: myself, my eldest daughter and my son but our needs as people on the spectrum are very different, most notably in that my son is hyposenitive, whilst my daughter and I are hypersenitive. My youngest daughter is also hyposensitive. This makes for an “interesting” living situation to say the least!

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There are three children in this photo: bonus points if you can spot the hypersensitive child!

What does hyposensitive mean?

When I say that my son is hyposensitive, I mean that his sensitivity is greatly reduced compared to the experience of a person who is typically sensitive.

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Playing in the snow without a coat or hat because he can’t feel the cold.

He likes life to be fast and loud and he doesn’t seem to feel pain much, this combination means that he is often running into things or jumping/falling off things.

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Dylan showing off one of many injuries.

In six short years, we’ve had so many trips to A&E to have bones looked at and cuts glued up that I’ve actually lost count of the exact number of times he’s been.

In Dylan’s daily life he needs a lot of noise, touch and other sensations to help him feel grounded. His little sister (Heather, three years old) is the same and constantly wants to be in my arms or on my back. She needs lots of tight cuddles and is always making a racket.

 

What does hypersensitive mean?

As you can likely imagine, hypersensitivity is the exact opposite of hyposensitivity. My daughter and I experience noise and touch to such a degree that it is almost too agonising to bear. We are not huge fans of cuddling (in fact, my daughter despises cuddles!) and clothing labels, fabric running through our fingers and loud noise can cause us pain. A trip to the supermarket can be overwhelming with all the bright lights, noise, smells, colours, people and other sensations. It takes my daughter and I a while to recover from such a trip. We usually need time to alone, away from anybody or anything after being out in public for a while to recharge our proverbial batteries.

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This is how we cope with trains.

Our chaotic household.

Having two hypersensitive and two hyposensitive people living in the same house is not always easy. My younger children always want the TV on full-blast, my eldest daughter and I like it on quiet; my two younger children enjoy being loud and moving about at the dinner table, my eldest daughter and I would sooner eat in virtual silence, away from other people; my younger children want the lights on full, my eldest daughter and I would sooner have low lights…you get the idea! While the little two want everything to be loud, bright and busy, my eldest and I want things to be quiet, muted and understated.

We try to counter this by giving my eldest daughter a room to herself while the little two children share (we only have a three bedroom house). That means that the younger children can have toys scattered everywhere, bright lights and lots of colourful decoration in their room while my daughter can have a more sparsely decorated space with an empty tent to decompress in after a long day of people and sensory input. This also means that the little two can be as loud as they like, climbing, running and jumping in their bedroom as they feel a need to do while my eldest can sit quietly in her room reading or drawing as she feels the need to do.

 

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Part of my daughter’s room is full of sensory input but she also has an empty tent to retreat into when things get too much.

 

Mealtimes can be tricky to navigate in our house, the smaller children bounce up and down and talk loudly and gleefully as they eat while my eldest sits quietly, shooting daggers at the smaller children and telling them to “shut up”. We get around this by arranging the seating very carefully, the little two children sit next to each other while Emma (my big one) sits away from them. Sometimes if we go out for dinner she will even find a little single seater table close to us and sit there instead of at the table with the rest of us, this draws some funny looks from strangers who probably think we’ve banished her from the family table! It’s what she needs though and the judgement of strangers doesn’t worry her or me; when you live in a neurodiverse household you learn to grow a thick skin and ignore the people who want to pass judgement.

Just to complicate matters.

Of course, life never likes to make itself too easy for us and a person who is one day hypersensitive can be hyposensitive the next. Humans, by their very nature, are fickle beings so it stands to reason that our sensory needs would fluctuate from time to time. My older daughter and I do have occasions where we become sensory-seekers and my younger children also have occasions where they become sensory-avoidant. I suppose this is positive in that it gives us a chance to see life from the other perspective, thus making us more empathetic towards each other’s needs. We muddle through in our household of varying needs, trying our best to accommodate each other where we can, even when we need very different things.

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The usually hypersensitive Emma showing us that sometimes even sensory-avoidant children make a lot of noise!

 

 

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!