ARCHIVED – Autism and Mental Health: A National Autism Society Conference
Posted on June 18, 2014 Leave a Comment
ARCHIVED: Please note, whilst every effort has been made to update blog posts, this blog post has been archived and may present outdated and incorrect information and terminology.For a couple of years now I have been grappling with the topic of mental illness and autism, both personally and now professionally in my research. So when the National Autism Society announced a conference on Mental Health and Autism I, very cautiously and with great planning, jumped at the chance to go, dragging my partner up to Manchester with me for support.
Despite NHS cut backs and plans for the government to reduce the social support it gives to autistic individuals and their families, there is still an encouraging number of professionals fighting for better mental health support and awareness for those with autism spectrum disorders. I should begin by saying how thoughtfully NAS sets up its conferences, and was particularly impressed with the quiet room intended for those actually on the spectrum themselves. It proved a fantastic spot to take breaks! I was also impressed by the number of clinical psychologists and team leaders in attendance, it was extremely positive to see professionals going that extra mile for a small number of the individuals they must work with on a daily basis. It was, however, noted by all the lack of psychiatrists present, a group which I believe would have benefited most from learning more and developing their understanding of this dual diagnosis. Clearly there are still bridges to be made within the mental health services, but hopefully the message will eventually get through, one Psychiatrist at a time. I will attempt to summarise the main and most interesting points here, but obviously will have to miss quite a lot of stuff out; there will be links at the bottom for more information.
The conference was chaired by Dr Tom Berney, Consultant in Development Psychiatrist. Dr Berney’s current focus is increasing adult mental health services expertise in autism. Initial speaker, Consultant Psychiatrist and Clinical Director Dr Juli Crocombe, spoke about the differential diagnosis of ASD and mental health and why it is important. The take home message was that autism spectrum conditions (ASC) are not a mental illness and that psychotropic medications can only help coexisting mental health problems and not autism itself. A lot of emphasis was placed on psychiatrists making the right diagnoses, not assuming features of autism were down to a mental illness and not assuming features of a mental illness were just down to autism. There are significant difficulties assessing individuals with autism due to problems reporting symptoms and communication problems which can lead to misinterpretation. For example Dr Crocombe explained how conspiracy theories and speaking to oneself are a common feature for those on the spectrum and shouldn’t be put down to a psychotic or delusional disorder.
Clinical Professor of Psychotherapy Digby Tantam spoke on a more specific issue, that of anxiety and the distinction between a disorder and just anxiety. Anxiety disorder is described as when arousal is discrepant of reality, it is the second most common co-morbid condition for those with an ASC. The disorder is thought to be so common is ASC because those with the condition are more susceptible to bullying and stressful life experiences. Biologically it is possible that those with ASC have more of a fear response and could be more susceptible to PTSD. Professor Tantam described how a lot of people with autism ruminate over past events more and often live in the past. Specific disorders like separation anxiety, social phobia and panic disorder are the most common anxiety conditions for those on the spectrum.
Next to speak was Associate Professor Tim Williams, Clinical and Educational Psychologist, who spoke on the comparison of autistic ritualistic behaviour and the repetitive behaviour seen in Obsessional Compulsive Disorder. This was a really interesting and lively talk. In many studies OCD is seen as one of the most common psychiatric disorders to coexist with autism, but a difference in distinguishing similar types of behaviour are often ignored. Associate Professor Williams described how he best way to distinguish OCD from ASD was to ask ‘is the repetitive action/activity causing you distress whilst you are doing it?’ those with ASD find these repetitive actions soothing whereas those with OCD are often filled with lots of horrible and compulsive thoughts alongside the behaviour. Treatment options were discussed, therapies like CBT were seen to work not very well for those with ASD and a different approach was necessary.
Bipolar disorder in young people with autism was closely examined by psychiatrist Dr Aditya Sharma. A worryingly common comorbid condition which has been a controversial topic for some time. Typically Bipolar is characterised by extreme highs and extreme lows, however those on the autism spectrum with the mood disorder more often than not experience mixed episodes of the two and are often missed. Significant autistic traits have been found in adolescents with Bipolar Disorder who do not have ASD. However, for those with autism it is hard to communicate mood so a possible diagnosis of Bipolar might be missed. A very careful approach should be made in medicating those with an ASD, most importantly the minimal dose should be used for the least amount of time.
All these talks were academically fascinating and enlightening but the most thought provoking was that by Callum McCrosson, an individual with autism and an Employment Support Worker for NAS. Callum was diagnosed at 23 after many years of incorrect therapy and drug treatments, never finding the right kind of support or support that fully understood his experience. This had massive implications on his family, work, education and social life. Since his diagnosis he has been sharing his story publicly, emphasising the importance of earlier diagnosis and more effective support.
Other talks were given on children and mental wellbeing, as well as depression and suicide risks and interventions. All these can be purchased from the National Autistic Society, and this blog post has really only touched on some of the important topics covered.
A quick stop off to Coronation Street before travelling home and I am putting together all this new information for my own research. I would love to hear of any of your experiences with mental health and autism.
You can read my earlier blog post on autism and therapy here.
ARCHIVED – “We’re all going on a (autistic) summer holiday…”
Posted on May 16, 2014 Leave a Comment
ARCHIVED: Please note, whilst every effort has been made to update blog posts, this blog post has been archived and may present outdated and incorrect information and terminology.
As an adult I have always found the concept of ‘holidaying’ a bit strange, maybe it is because the whole point of a holiday is to get away and relax, and all I see is a stressful airport, lots of new people and places and several meltdowns along the way. I have some great memories of my childhood holidays in England with my parents and two older brothers, significantly more travel sickness memories between the three of us in the back of the car I should add, but that was really our only concern at that age. I can now empathise with how stressful going on holiday must have been for my parents and I cannot understand why they did not just forgo them for 18 years. Had they done so then they would have saved us from the infamous string factory in Cheddar Gorge, which in a moment of desperation my mum swept us into to cure our boredom and shelter us all from the torrential storm happening outside. Holidays have really only become a stress for me as I have gotten older and my routine has become less and less flexible and my inability to plan anything successfully has emerged as a significant handicap; last year’s surprise weekend trip to a B&B named after its vast array of craft materials for my partner’s birthday was a real low point. Despite this I do quite like going to new places and being away from home, it is so easy to get stuck in a rut that seems unbreakable, and I always find a holiday puts everything into perspective and lets me start a fresh on my return; or more likely I enjoy the immense relief of returning home so much those stresses seem insignificant. I now also have the benefit of a partner who does her absolute best to ensure it all runs smoothly and I am not left in charge of anything too important. So two years into our relationship, and lots of small city breaks later, we decided to give a proper sun, sea and sand holiday and whirl, which is the main topic of this blog post. Two years is actually a lie because we decided to do this a year previously, but unfortunately I was inflicted with a kidney stone a week before our departure and spent the month in and out of A&E giving birth instead (giving birth is an understatement if anything).
So, an extortionately high priced health insurance policy later and we were all set to go to Crete. Having only been on one very short plane journey a year earlier to Amsterdam, naturally my main concern was surviving the flight; in my head the chances of survival were about 50/50, and what with being in the air for 4 hours this time those chances were being significantly reduced. The huge advantage to my catastrophic belief in my imminent death was that I did not need to waste any time or energy on worrying about what the other possible stresses might be should I survive. It also meant I was the most prepared anyone could physically be for a holiday. I packed a month before and unpacked and repacked several times. I can only liken this to when you are about to start back at school after summer and you have compiled all your exciting new stationary, clothing and bags – this might be something only relevant to myself. Obviously this also meant I had packed for every eventually; sun, rain, blisters, snow storm, avian flu, all the usual really. I had also begun practising mentalization, a skill which until this point I had flippantly discarded as useless self-help mumbo jumbo, but desperate times call for desperate measures. The task was to try and think outside my internal thoughts and feelings and experience the things around me. Well I find it quite hard to recognise these differences anyway, let alone separate them; in consciously trying to experience things externally I was doing a lot of internal thinking, a very vicious circle. I started by taking walks with my dog where I would be more distracted than sitting at home mentalizing my bookcase, I tried to pick out the tallest leaf on trees and counting the sounds I could hear. It was hard work but also quite refreshing. I also took to yoga in the lead up, which if anything has made me less physically flexible than I was to start with but my breathing control and patience is now superb; obviously this was lazy video yoga as opposed to a proper class, which probably meant I was doing it all wrong. I took the days leading up to the holiday off work, cut out any stressful social activities, basically I became a complete hermit; you would have thought I was in training for an Olympic event rather than a fun sea and sand getaway. This method of stress reduction has been described to me as a pond, which fills up with each added stressor until it spills over and floods. I do not like this analogy because ponds are filled with water, not floating abstract metaphors of stress, however you get the drift.
I made it to the airport after a 3am wakeup, which I thought would add to my anxiety but it turned out I was too tired to process anything other than breathing and walking. I had armed with me a travel ‘distress box’. The idea of these are that you fill it with things that cover your five senses; something you like to taste, a smell you really like, a picture you find relaxing to look at, music you enjoy listening too, and finally a texture you like to feel. With limited baggage allowance and strict prohibitions on liquids mine was a little makeshift. In my pocket I put a wad of cotton wool with nice smelling perfume on it; a great idea but in hindsight this made me look quite dodgy and I ended up pretending to blow my nose on it to make it look more normal. I forgot about the taste part so put some Lucozade sweets in instead, I figured if anything they will at least keep me buzzing. I had my iPhone on me anyway so that had pictures and music on it, and then finally my most helpful vice was my silky Milky Mouse toy; technically he has a bag inside him (do not ask, Disney Land’s most useless and impractical souvenir), so I did not look too special needs scratching a cuddly toy for the entire flight. Note to self I must invest in a bigger box for everyday use at some point.
Three paragraphs in and I am only just discussing the actual holiday, I feel your pain but in some ways this seems like the easiest part of the whole experience. I have gotten use to city breaks, I quite enjoy the anonymity of somewhere big and busy, it is sensory overload hell but it all seems to happen so quickly and fast you do not have time to stop and crash. This holiday was a different experience for me altogether. Slow and tranquil, but also enough time to flip out over the change in routine and unfamiliarity. There were new unwritten rules to learn, and so many polite conversations with vaguely familiar people you would never get to know properly, but who demanded a lot of social resources. My partner and I are great at feeding off each other and making each other feel comfortable anyway. The food buffet presented a whole new experience for me, which was quite surreal. Unwritten rules about buffet etiquette, which turned out just to be a middle class free for all. Surprisingly a language barrier was not an issue. It is often said that those with Asperger’s get along great in foreign countries, many moving abroad, because their social hindrances are less noticeable when they do not speak the language. I very patiently managed to describe what Cranberry juice was to the Greek waitress, who promptly delivered me a pineapple juice instead. I also eagerly went along with all the local touts showing me their wares, whilst my partner looked on in dismay. Things which at home in the UK would see me turning red and shy with embarrassment.
Despite the amount of anxiety did I enjoy the holiday and would I go again? Definitely, and not just because I am a masochist and a martyr. I often feel like a child experiencing things for the first time, stuff which has taken me ten years longer to learn than my peers, and at an age to appreciate it new experiences are often exhilarating. I like to document this with my camera, I take those images and experiences away in my photographs and return to them time and time again afterwards, slowly absorbing everything in piece by piece. I went snorkelling for the first time, despite being terrified of the waves and forgetting to breath, I only saw two very pale looking fish but I was so proud of myself for doing it this did not seem to matter. I rode on the back of a scooter for the first time, a petrifying experiencing to begin with after dropping the scooter into a plant point and crushing my arm whilst stationary, but once put on the back and driven around instead it was huge amounts of quite calming fun.
My main piece of advice for a successful trip is just to plan, plan, plan; you can never plan enough, from picking your best flight times to the size and location of the hotel. However, as soon as the travelling starts let go and trust you have prepared thoroughly and are safe. For more advice visit the National Autism Society’s webpage.
ARCHIVED – 14 Amazing Women with Autism: Makers’ List
Posted on April 27, 2014 Leave a Comment
ARCHIVED: Please note, whilst every effort has been made to update blog posts, this blog post has been archived and may present outdated and incorrect information and terminology.
With Autism Awareness Month coming to an end MAKERS, which hosts the largest video collection of women’s stories, has announced a list celebrating 14 amazing women with autism. A much more worthwhile compilation of individuals than Heat Magazine’s Weird Crush List. With so few women compared to males being diagnosed with Autism Spectrum Disorders, it seems remarkable that there are so many who have made such big and worthwhile contributions, and not to mention fantastic role models. The ‘Rain Man’ condition is a thing of the past. These are all independent and strong women, leading the way for autism awareness and knowledge. An eclectic mix of high-functioning women, some who even in adulthood struggle to communicate verbally, which makes there achievements even more remarkable. I am not really one for parties, but if God forbid I had to host one, these would be my ideal guests! There are many more I could personally add to this list, in particular author Rudy Simone, but here is the MAKERS pick:
27 year old, Hungarian autistic savant writer, artist and poet, introducing Henriette Seth. Refused by all the primary schools in her area due to severe communication problems, Henriette is now a world renowned and award winning artist and writer and Psychology graduate.
This is 17 year old Jessica-Jane Applegate. She has Asperger’s Syndrome and is also a Paralympic Gold medalist, setting the world record for the 200 freestyle swim.
Next on the list is Australian author Lucy Blackman. She used typed communication throughout her adolescence and has since graduated from university and is the proud author of ‘Lucy’s Story’. She now gives talks on the importance of facilitated communication and how it has changed her life.
This is Amanda Baggs, a 34 year old American Autism rights activist. She apparently cannot speak verbally but has her own blog and viral You Tube video ‘In My Language’.
Introducing Donna Williams, Australian writer, artist and singer. Donna suffered from hearing problems as a child but was not diagnosed until in her 30’s. She is the author of the international bestseller ‘Nobody Nowhere’, and is a successful artist and composer. Currently she works as an international public speaker and autism consultant.
This lady is my personal autism role model. Not diagnosed until her early 40s, Liane Holliday Willey is an accomplished author and equestrian. Her book ‘Safety Skills for Women with Autism’ and ‘Pretending to be Normal’ are popular reads for females on the spectrum.
No introduction needed, this is world famous Susan Boyle, who rose to fame on the UK’s Britain’s Got Talent show in 2009. She is a Grammy Nominated and best selling singer.
An unlikely face for autism, Phillipa Margaret Brown, AKA ‘LadyHawke’ is a New Zealand singer and song writer. Her music is award winning in New Zealand.
Lizzy Clark is the first actor with Asperger’s to play someone with Autism, most famous for her role in ‘Dustbin Girls’, a Jacqueline Wilson adaptation. Her mother has since started up the campaign ‘Don’t play me, pay me’, which promotes those with disabilities to get into acting.
Another unlikely face, Heather Kuzmich is the fourth runner up of America’s Next Top Model. She has been open about her Asperger’s during the competition and has made TV appearances and featured in magazines discussing her diagnosis.
Introducing next Dawn Prince-Hughs, anthropologist. Despite struggling with fine motor skills Dawn was not diagnosed until high schools. She believes her passion for animals, and in particular her fascination with gorrilas, has helped her develop coping mechanisms to deal with her Asperger’s. She is the author of Songs of the Gorilla Nation: My Journey Through Autism. She now works with gorillas at Woodland Park Zoo.
Valerie Paradiz was only diagnosed with autism after her son was diagnosed. She is an autistic activist, promoting support in schools and corporations for those with disabilities.
This is Daryl Hannah, recognisable to anyone who has seen the films Splash, Kill Bill, Wall Street or Steel Magnolias. She has struggled with anxiety as a result of her Asperger’s, and at one point when she was younger doctors suggested institutionalizing her. She persevered, concentrating on her passions acting, ballet and the environment.
Last but certainly not least, Temple Grandin. Her autism led her to be world-famous for revolutionizing the live stock industry. She works lecturing at a university and also writing and giving talks on autism. Her books ‘Thinking in Pictures’ and most recently ‘The Autistic Brain’, give a very unique insight into the disorder.
For more on women on the spectrum read my previous blog post The Misdiagnosis of Women on the Autism Spectrum: A Shared Story
ARCHIVED – ‘It’s just emotions’: Experiencing feelings as an Aspertypical
Posted on March 20, 2014 Leave a Comment
ARCHIVED: Please note, whilst every effort has been made to update blog posts, this blog post has been archived and may present outdated and incorrect information and terminology.
I have learnt to accept that trying to think about your emotions and work out what you are feeling to an autistic person is like trying to contemplate the size of the universe and its meaning, if not harder. The more you try and imagine the more frustratingly distant and confusing the concept seems. Whereas if you let the notion loosely drift above yourself and your thoughts, without trying to grasp hold of it, however tempting it may be, it becomes less foreign and more connected to yourself. But you don’t have to consciously understand something to experience it, it is a bit like a religion.
When I try and think about what I am feeling I draw a complete blank. Like a black blind has just been pulled down connecting thought from feeling. I can’t access it, computer says no. Yet I definitely have feelings and the ability to experience emotions. I know this because of the physical manifestations of those; I know I am anxious because I keep needing to check I have turned things off, I know that has made me sad because I feel very tired and do not want to do anything, I think I am angry as I am having fantasies of smothering that person with a pillow. It is a complicated and tiring route to access emotions, but where there is a will there is a way, and it seems like an important part of being a human to accomplish.
A kind anonymous person recently left a very interesting article on my desk at Uni, which addresses these issues. The official term for not being very good at identifying and describing your own emotions is ‘Alexithymia’, which are thought to lead to reduced empathy and an impaired ability to recognise the emotions of others. Just like someone with Dyslexia struggles to interpret works, those with Alexithymia struggle to read feelings. The review by Bird and Cook examines this condition in Autism and Asperger’s, where a lack of empathy is a typical impairment associated with the disorder. Empathy arises ‘when the perception of another’s emotional state causes the empathizer to experience that state’. So in an individual who struggles to even identify their own emotions, identifying those of others seems like a bit of a tall order. What this review proposes is that Alexithymia is in fact a separate condition to Autism, but that a greater proportion of those on the spectrum have it. As such it should be viewed as separate, something autism is associated with rather than it being a part of autism. The condition is also seen commonly in other menta health conditions, specifically Schizophrenia, eating disorders, Parkinson’s disease and social anxiety.
Emotions are abstract entities, you need more than a literal, black and white mind to interpret them. That is not to say that those with autism cannot experience and interpret them, but it is fair to say that the process of this causes a lot of anxiety and the occasional ‘meltdown’. Which is why finding ways to channel emotions and experience them ‘safely’ is such an important technique to teach a young person on the spectrum. For me I found my comfort in music, for some reason emotions are much more salient when in this form. Choosing what type of music I want to listen to is also a great indicator of how I must be feeling, as soon as Elliot Smith starts blaring out my speakers I know I am descending into a dark place. Many people find an emotional connection with animals, or even with objects. There are certainly objects in which I have invested a lot of emotion in, and sometimes it may seem I care more for those things than for people. Free form art is also a fantastic method to channel feelings, particularly ones hidden beneath the surface. Whatever hits the spot, all these methods are essentially the same tool; they transfuse emotions like a filter, creating a physical entity which are much easier to interpret and work with. The key to accomplishing emotions is really to accept them for what they are, and to tease them out, pulling the plaster off the emotional block slowly, rather than attacking your brain to give them up against their will.
ARCHIVED – The Art of Networking
Posted on January 10, 2014 Leave a Comment
ARCHIVED: Please note, whilst every effort has been made to update blog posts, this blog post has been archived and may present outdated and incorrect information and terminology.
I have entered a new episode in my life in the saga of Asperwars entitled ‘networking’. Just when I think I have grasped the intermediate level of human to human contact, 7 years late, I have been thrown a curve ball. Week one of my research doctorate course and the words ‘key skills’ and ‘networking’ have been casually thrown around like confetti, littering all over my research plans. I have already received two lectures on the ‘art’ of networking and it has become apparent that the rest of my career from this point onwards will depend on it. My first practical taster came in the form of a compulsory ‘networking lunch’; an abominable combination which as it transpired actually equates to just a sandwich and chat. Needless to say I remember no names or research projects as full concentration was required to eat said sandwiches, whilst standing, whilst pretending to be engaged in conversation, whilst not missing my mouth in front of a large group of strangers. However, rest assured I have many more courses on mastering the skills necessary to becoming the Perez Hilton of the academic world we must all be aiming to be; after all, it isn’t what you know, it is who you know.
Which brings me on to a niggling question which has been annoying me since I started this new venture: what the hell does ‘networking’ even mean and how has it become some such a substantial concept that courses can now teach it – what is to teach!? After consulting my twenty page ‘key skills’ booklet, emphasis on ‘key’, I have come to the conclusion that it is another weak concept spawn from the corporate world, which aims to make clinical work of even the most basic human interactions. The reason being? So we can all spend less time working and more time in meetings and on courses and thus more time eating free sandwiches. This should be a dream for anyone with Asperger’s, being taught how to communicate, yet instead it brings a sense of dread to the pits of my stomach.
The aim of the game is to create an impressionably good still image of yourself, like a walking talking business card that can be ready to present even when you have just be rained on, soaked through to your skin and then found yourself standing up on a crowded bus squashed between the local bum and the leery guy from your office. Create your ‘elevator pitch’, a short synopsis of your professional self which is short and punchy, or ‘sexy’ as one of my professors described it, which could be delivered in the time it would take to share an elevator ride. I don’t know about you but my elevator chat is limited to “up or down?” and “excuse me” – short but definitely not sexy. So what can I include in this ‘chit chat’? Would it be a nice touch to mention what my partner and I did at the weekend or can I go even further and mention my niggling tooth pain? The next step is to start weaving people into your networking web, selecting who to target with your schmooze and then pouncing with confidence until you can calmly walk onto the next, contact details in hand. Eventually all these links grow stronger and wider, until people starting seeking you out with their elevator chit chat.
No matter how many times I read how this works I can’t help but imagine myself in the computer game The Sims, standing on my porch waiting for neighbours to pass by so I can wow them with my excellent ‘serious talk’ and ‘joke’ combination. Ultimately, so when my career promotion demands it they are there ready in my contact list to invite over to take our friendship to the next level. So a lot like real life networking! Except it isn’t, because it is a superficial game and not a framework for long lasting real life relationships, we are not characters in a game, calling someone you’ve barely spoken two sentences with for their support. Facebook, Twitter, Tindr, Grindr and all those other instantly gratifying social networking sites and apps have replicated a very simple system of networking, but one that only has full effect when you actually meet in person who you are speaking to, know them already, or at least take the conversation past “a/s/l?”. Fortunately the internet gives you the space and time to do this, networking in real life situations seems like an altogether more bizarre concept; it is one thing being able to fool a stranger online half way across the world you will never meet, but another thing to pull off that performance in front of an actual person. It is an abstract man-made conception which really goes against our instincts and predispositions to form bonds with people and meaningful relationships which give us our worth and support. Imagine a monkey travelling around the jungle to shake hands with all the other monkeys, picking out the best of the bunch to mentally recall should he have a suitable business proposition he needs help with. No, he would have been eaten by bigger badder monkeys for entering their ‘hood’ suspicious of his motives.
On the surface it seems like something all humans do on some level every day. I go to several public places in any one day, people may say ‘hi’, someone may stop for a slightly longer chat, it is a network of sorts but not one I have deliberately orchestrated, it isn’t meeting people for the sake of meeting people. Maybe this is what is most discerning about networking for the autistic mind, its purposeful superficiality. Everyday pleasantries aren’t exactly my strong point, I do not have an exhaustive list of polite conversation, I am eager to get beyond the surface so I can breathe a sigh of relief and have a discussion that matters and is actually interesting with people I actually like. So my network is probably going to grow a little bit slower than most and I may make it into more of a circle instead, I am willing to forgo free sandwiches for that.
ARCHIVED – ‘The Curious Incident of the Dog in the Night-Time’ on the Stage
Posted on September 30, 2013 Leave a Comment
ARCHIVED: Please note, whilst every effort has been made to update blog posts, this blog post has been archived and may present outdated and incorrect information and terminology.
In 2012 the award winning bestselling novel ‘The Curious Incident of the Dog in the Night-Time’ transformed itself on stage, sweeping up an impressive 7 Olivier Awards in its first year, leading many to compare its success to that of ‘War Horse’. As an individual on the autism spectrum who very much enjoys theatre I decided to step away from my computer, fight my London daemons and go experience the story in the flesh.
Given that the author of the acclaimed novel created his main character by giving him ‘kind of nine or ten rules that he would live his life by’ and then did no further research on Autism or Asperger’s, the character sprung onto the stage does a remarkable job of conveying to the audience how it feels to be autistic. You can read all the text books and personal accounts of Autism written, but there is nothing quite like being given a chance to experience it with all your senses, because ultimately it is the senses which the disorder most affects. The play begins in darkness with a clashing whirl of light and sounds leading to the first scene: an uncannily realistic looking dead dog with a folk staked through its middle.
Christopher John Francis Boon is 15 years old. He is exceptionally good at mathematics and dreams of becoming an Astronaut. He does not trust strangers, he has never ventured beyond the end of his road and he definitely did not kill the dog, even though he is found looming over its lifeless body at the time of the incident. However, we know he is telling the truth because he also never lies. After being charged at the scene of the crime for attacking a police officer Christopher sets out to uncover who exactly did kill Wellington, because whoever did kill Wellington has committed a crime and so should be punished. Despite his father’s protests he must overcome his stranger fear and embark upon his mission just like a young Sherlock Holmes would: knocking on each of his neighbour’s doors and asking them quite matter of factly “Do you know who killed Wellington?” As truths are revealed not only about the ‘incident’ but also about the mother he believed had died, the mystery takes him beyond the boundaries of his home in Swindon and to another world entirely, more alien to him than outer space: London.
“What is it that boy’s got?” I overheard the woman next to me ask her unenthusiastic theatre buddy.
“It’s umm… oh it’s that autism but at the high end, it’s that… ummmm… Asperger’s”
“Oh yes we decided a woman in our book club had that, very inappropriate responses”. After hearing this painful exchange of conversation during the interval which led to my tongue bleeding, it suddenly dawned on me, autism is not mentioned in the play at all. I had expected a very autism biased audience, but in fact it comprised your regular eclectic West End theatre mix and people were going to watch ‘The Curious Incident of the Dog in the Night-Time’ like they were going to watch ‘Wicked’ and ‘Les Mis’. The author, Joe Haddon, has been adamant since the book was published that it is not a book about Asperger’s but about being different and that Christopher not be labeled, as this is not the most important thing about him. It is this understated reference to the disorder which makes it most accessible to such a wide audience; it allows people to see themselves in the character rather than getting caught up in the ‘Them’ and ‘Us’ mentality such labels evoke. There is no denying, however, that Autism is a significant part of the story, and to ignore it would like watching the performance blindfolded.
Where the book fell short in places the stage production dexterously and potently provokes the enervating sensory overload Christopher experiences, the audience can not only see it but feel it too. Christopher is obsessed with trains and their timetables but never having actually been inside a train station, his first experience is somewhat awakening. Crashing unexpected noises louder and louder, luminous numbers flashing bigger and bigger, people moving and switching, an endless stream. The intensity grows as Christopher begins to crumble, repeating his destination over and over to stay focused and sooth himself, he is carried around the stage as though he has been swallowed by his senses before the world goes black collapsing on the floor. His first tube experience in London is no better, the rails looming like an endless pit with electricity flashing beneath them as the wall on the stage closes in pushing him closer and closer to the line. People come and go from the trains whilst he stands by dazed by the repetition until finally being dragged into a carriage. Christopher’s explicit experience of a ‘meltdown’ following these events was performed with impeccable accuracy and attention to detail, from the twitching of his hands to the convulsion of his entire body. So good was the sensory overload experience that I found myself stimming with my own hands on the verge of a meltdown. Note to self, stick to Autism friendly viewings in the future and avoid all London public transport beforehand.
As Christopher himself explains on board the train, most people only notice one thing at a time, such as “there are sheep in that field” or “It is raining outside”, whereas people like him see it all: “there are 15 sheep in that field, 5 lambs, one black, there are two types of flower nearby, bluebells and poppies, the train has passed three crossings, the first had a red Fiat Panda car waiting and a blue Ford Fiesta… etc etc’. It is no wonder the world is a frighteningly overwhelming place to navigate with a brilliantly detailed mind such as his, and his difficulty empathising with others and his naïve literalness and honesty only makes this foreign land even more of a challenge; he would be well adept with his dream career as an astronaut in space. Lead actor Mike Noble inhabits the role with such sensitivity and precision it is hard to imagine he does not have the disorder himself, so believable was his every move, simplicity and directness. A performance very much aided by a masterminded stage set up perfectly to bring the character to life; a mathematical grid which lights up in different coloured lines across the floor, bare apart from a handful of props scarcely placed in positions around the edges, ordered and clearly 
defined.
Interwoven with the fast pace and drama were moments of heart-warming uninhibited humour which melted the audience with audible ‘Awhs’. Unable to connect with others or allow them to touch him, his parents hold out their hand allowing Christopher’s to mirror and join theirs; this provided some of the most emotive scenes on stage watching the silent connection. To top it off and kill the audience with compassion a live puppy is brought on stage at the end, Christopher’s unbounded loyalty and love shines through and unlike his rather inhibited connection with fellow humans, his connection with animals is one of pure empathy.
The play’s ending is more heartbreaking than heart-warming, as a confident and hopeful Christopher believes he can now tackle anything after going to London and completing his Maths A Level, whilst his teacher and mentor is somewhat less optimistic, and the futility of his situation is plain for all to see; a bit of a downer! The play was by no means without its flaws. The theatrical set up of a play within a play was somewhat annoying, not helped by a rather irritating narrative throughout. To be picky the story itself illustrates only a very stereotypical view of autistic spectrum disorder behaviour, and when put on the stage was not particularly ‘autism friendly’. Despite this it does a fantastic job of bringing to life a way of viewing the world not previously available to those not on the spectrum, and leaves even the most typical ‘neurotypical’ seeing parts of themselves in Christopher, bridging the gap between what is ‘disorder’ and what is ‘normal’. A must see for anyone connected to anyone on the spectrum, and pretty much everyone.
For more information watch this very interesting interview with lead actor Mike Noble, who spoke to Theatre Office reporter Rebecca Felgate.
ARCHIVED – Eating Disorders and Autism
Posted on September 18, 2013 Leave a Comment
ARCHIVED: Please note, whilst every effort has been made to update blog posts, this blog post has been archived and may present outdated and incorrect information and terminology.
Five times more girls with anorexia scored into the autism range and well over half with ‘broader autism phenotype’, meaning they have some similar traits. This was especially true on the systemising questionnaire, showing many of the AN patients had an above average interest in systems, leading the authors to suggest that eating may have become another system, concerning body weight, shape and food intake.
On the outside, however, the disorders couldn’t seem any less similar. Anorexia is an eating disorder characterised by a refusal to maintain a minimum bodyweight and an obsession with food and weight; environmental pressures, genetic predisposition, family situations and body dysmorphia are all major risk factors. However, in this research it is explained how the word Autism literally means an exclusive focus on ‘the self’, not too dissimilar from some of the characteristics of an eating disorder where an individual is very preoccupied with themselves and their body. So could anorexia in some cases be a byproduct for those with autism who have systemized their eating habits to the extreme?
Certainly both conditions share deficits in emotional intelligence, as tested with advanced Theory of Mind tests, in layman’s terms this refers to an individuals ability to infer the mental state of others and to ’empathise’. Both groups also struggle on tests of emotion recognition in faces. Whether or not this is the negative side effect of starvation for the anorexia group remains to be seem, although studies testing anorexia patients after recovery seem to dispel this theory as results remain similar.
Tony Atwood explains how concerns regarding food intake or the diagnosis of an eating disorder can be what sparks assessments for Asperger’s. Sensory issues with food seem to be the biggest problem for folk on the spectrum, but what may also play a significant role is a need for control. Food can be controlled, it can be systemised and provide routine, for an individual with Asperger’s who has become incredibly anxious and has become adept at hiding their disorder, food control may provide great comfort and is not necessarily obvious to those around them. To have an eating disorder requires an incredible amount of will power, determination and obsession, all great strengths of an Aspie! The danger is in misdiagnosing those on the spectrum as only having an eating disorder and vice versa. Clearly those with autism and eating disorders require very specialised treatment and support and may not respond as well to classic eating disorder treatment.
Fortunately for me I have a similar amount of willpower as my hyperactive West Highland Terrier, an addiction to sweet foods, and manage to gain control in other areas of my life. It is not hard to see though how easily those autistic traits could form themselves into another disorder altogether with a life of its own.
ARCHIVED – The Borderline of Asperger’s: The similarities and differences between Borderline Personality Disorder and Autism
Posted on June 12, 2013 Leave a Comment
ARCHIVED: Please note, whilst every effort has been made to update blog posts, this blog post has been archived and may present outdated and incorrect information and terminology.
Emotionally charged meltdowns, intense relationships, superficial friendships, miscommunications and incorrectly assumed intentions. A lot of autistic people could identify with this list. An equal number of those with Borderline Personality Disorder (BPD) could also identify with this list. With individual’s on both sides being misdiagnosed with the other condition, what are the key differences and how can we tell them apart?
Those with a Borderline Personality Disorder (BPD) often present with a pattern of significant impulsivity and instability of affects, interpersonal relationships and self image. This can manifest itself in an intense fear of abandonment and intense anger and irritability, particularly when others fail to understand them. Typically they flip between idealization and devaluation of others, alternating between high positive regard and great disappointment, and frequently display suicidal and self-harming behaviours**. A world apart from the often black and white mechanical thinking of an autistic person, where objects and animals often gain a greater significance than humans, and where other people’s thoughts are not even understood let alone open to manipulation. Yet the functioning of both individuals can appear the same, and frequently those with autism are misdiagnosed as having a personality disorder, particularly BPD, before their autism is recognised*; this is especially true for females.
Faced with the choice of BPD or ASD my psychiatrist precariously leant on the side of the former. BPD is most common in females and could be considered an extreme form of the female brain, in much the same way that autism has been considered an extreme form of the male brain. So of course being presented with a depressed and anxious patient, who seems to be oversensitive to all forms of treatment and a general pain in the arse (PITA), shoving them into the bracket of ‘unstable female’ would seem like an appealing option. Fortunately for me I had an imminent date with an adult autism assessment clinic to squash those BPD rumours circling my mental health records. What others should have noted was my lack of displayed emotion since childhood, my evident self directed anger, and my desperate struggle to please everyone as key signs that my personality was not disordered, my entire neuronal network was disordered and I was desperate to gain control over it. So why did they look the same in me and so many other women?
Autism expert Tony Atwood believes that this misconception of females on the spectrum comes from their ability to hide their autism better than males, resulting in behaviour patterns which can mimic those with BPD. This is particularly true if in an effort to mask social confusion and appease others, she models herself on someone else to achieve social success. This can lead to fake and forced social interactions, which can lead others to feel she is manipulative and superficial and completely divert away from autism. On the other hand the Aspie’s experience of bullying, rejection and betrayal can lead to fears of abandonment and intense and unstable relationships with others, mimicking a BPD or actually in co-morbidity with BPD.
There are some key differences between the two disorders which set them apart. Firstly, whilst autistic people do not get social cues or they misunderstand them, those with Borderline Personality Disorder are hyper aware of them, but often distort them. Whilst both can have impairments when it comes to empathy, Autistic people do not understand the social norms that go with a situation, whereas someone with BPD may exploit and manipulate the situation ( not intentionally though I must add). Manipulation can be seen in those with autism, however, this usually derives from an almost obsessive need to control their surroundings and to please themselves. In terms of self-harming behaviour both are vulnerable, typically though autistic people use it to release inner tension, whilst those with BPD may be using it as a cry for help from overwhelming emotions. Generally BPD behaviour seems to be a result of defence, usually manifesting itself in late teens and adolescence and commonly developing after a particularly unstable childhood. As we know (or should know, read more of my blog if not!), those with an ASD are born with the condition, it may only become apparent to others over time but it must have always been there.
The danger is in thinking that those with BPD are to blame for their behaviour. It was only after I researched the issue and spoke to those who have worked with them, that it became apparent that those with BPD are no more in control of their behaviour than those with an ASD. There tends to be a lack of awareness on both sides as to why their behaviour has manifested in the way it has, and actually the treatments for both disorders can benefit the other. Neither respond particularly well to medication, but therapy with an emphasis on interpersonal relationships can hold the key. Particularly work focussed on metallization, which encourages a greater awareness of the intentions of oneself and those around them. Mentalization-based treatment (MBT) was developed with Borderline Personality Disorder in mind, the object of which was to increase the mentalization capacity in patients which should improve affect regulation and interpersonal relationships**. For those autistics who lack a theory of mind (the ability to understand others mental states), this type of therapy can also be incredible beneficial, even in those like me who, on a much more mild level, just struggle sometimes to interpret the intentions of others.
So it seems that BPD is on the borderline of autism in behaviours and functions alone, the gap between the two in terms of origin and mental processing couldn’t be any wider or the two any more diverse. Deemed as ‘incurable’ however, the treatment for both is focussed on behaviours, and because of this the two are still tied together in harmony.
To read the follow up blog post click below:
The Borderline of Asperger’s Revisited
ARCHIVED – Autism Art Therapy: no artistic talent necessary
Posted on April 19, 2013 Leave a Comment
ARCHIVED: Please note, whilst every effort has been made to update blog posts, this blog post has been archived and may present outdated and incorrect information and terminology.
“A picture can paint a thousand words and bla bla bla…”, have you ever actually tried drawing your words or your feelings (what the hell are those?), without it turning into a poor attempt at a fruit bowel or Van Gogh sunflower? It is a tough task for anyone. Yet it could be the very thing to unlock that door which has been shutting you off from the world, if you can get over your personal boundaries and perfectionism that is.
As I discussed in a previous blog post “Therapy for Aspergers”, to date I have had a string of hilariously bad therapists and counsellors, my first four months of Art Therapy were to be no different. Our first session began with an exercise in ‘communicating with art’, basically she drew a squiggly line or shape and I responded to that on the same piece of paper, or at least that was the theory. Straight away I felt very exposed and would simple try and get my squiggly line as far away from hers as possible, whilst she continued to invade my metaphorical space and perfect patterns with her colour clashing unruly marks. My squiggly lines and shapes developed into lightening strikes and rain clouds; a war had begun.
I spent the next four months a closed book, drawing safe images of the solar system, weather elements and moths/butterflies/birds/anything-with-wings in flight. All derived from pictures or television programs I’d seen that week, all had very simple emotional explanations; the solar system revealing my loneliness, the weather my inner turmoil, the flying as being free. I was studying Psychology at the time, I was ahead of the game! Everything had to be drawn correctly; I couldn’t tolerate anything that didn’t look exactly how I’d imagined it. This wasn’t therapy it was an art class, except I was the only one attending it!
Finally, thanks to the formidable perseverance and patience on the art therapist in question, I got tired of hiding my feelings and worrying about my art and just let it all out. I finally started to connect the two: drawing and feeling. Once I got the hang of it, it became, and still is, a vital tool in helping me manage my thoughts and feelings. As I wrote in a previous blog post “The Creatively Impaired Autism Fallacy”, It made me realise that not everything has to have a point to it, that just in the act of creating something disorganised and irrelevant it would untie a lot of the knots in my head, and that in itself gave it a purpose.
So that is my experience, but how does Art Therapy work in broader terms for those on the autism spectrum? The research is somewhat sketchy, the benefits are hard to quantify, not least because artistic types are not known for their statistical prowess, and unlike structured therapies like Cognitive Behvaioural Therapy, Art therapy is adapted around the client’s needs; or as my art therapist likes to call it, “Bespoke Therapy” – not the sort you can make self-help leaflets on.
In general terms it is based on the belief that ‘the creative process involved in artistic self-expression helps people to resolve conflicts and problems, develop interpersonal skills, manage behavior, reduce stress, increase self-esteem and self-awareness, and achieve insight.’ For those with autism this can aid the processing of memories, recording images and visual information and expressing ideas, which can become quite overwhelming and lead to meltdowns.
Individuals with autism seem to have incredibly good visual skills but struggle with verbal communication. This can often make tradition psychotherapy a no go, but Art Therapy a great alternative. It has been reported by art therapists that children able to engage in one-on-one sessions start to show an improved ability to imagine and think symbolically, more insight into others facial expressions and a new ability to manage sensory issues. Art seems to give these children (and some adults) a means to make a bond with another person, skills which can be transferred beyond the therapy room, and in some cases it has revealed remarkable artistic talents.
Going into therapy for the first time, or after a bad therapy experience, can be a scary prospect. It is important to find someone who has experience working with individuals on the autistic spectrum, and is able to adapt their work around your needs. If you are not quite ready then start your therapy at home on your own, just start drawing and creating. It isn’t about whether or not you enjoy art or are naturally creative; the idea is to create something tangible to remove those overwhelming thoughts from your head and sort through them. A bit like Dumbledore’s Pensieve, pretend your paint brush is actually a wand and the experience will me much more enjoyable (*not guaranteed, Harry Potter atheists and agnostics excluded).
In her book “Safety Skills for Asperger Women”, Autism advocate Liane Holliday Willey discusses how she found externalising her emotions by creating something extremely cathartic. As someone who wasn’t a natural artist she used photos from magazines to create a montage of her feelings and possible resolutions; this was also my chosen method of expression in my first art therapy sessions too, and helped me ease myself into the creative process.
For more information:
“Drawing Autism” is a collection of artwork by individuals with autism coupled with interviews of the artists, with a forward by Temple Grandin. More information on the book can be found here: http://markbattypublisher.com/books/drawing-autism/
http://autism.about.com/od/autismtherapy101/a/arttherapy.htm
ARCHIVED – 4 Not So Typical Neurotypical Brothers – Does autism run in families?
Posted on March 27, 2013 Leave a Comment
ARCHIVED: Please note, whilst every effort has been made to update blog posts, this blog post has been archived and may present outdated and incorrect information and terminology.
In 2011 The National institute of Mental Health reported a 19% chance of parents with autistic children having subsequent autistic children. Upon reading this statistic I am full of psychopathic jealousy and rivalry towards my siblings moving swimmingly through their neuro-typical lives. The sort of jealousy that can only be experienced by the youngest of the sibling pact, as you remember all those times you watched on with powerlessness as you older brother stole the chocolate you had been saving for a special occasion and just inanely grinned when they were discovered, whilst you parents just chimed “it’s just what happens when you have older brothers” whenever you protested/cried yourself to sleep praying one of them would wake up in the morning a girl. You see I am the youngest of four older brothers, and I am the only one to have been diagnosed as Aspergers; pretty unfair given the official statistics. However, instead of disputing this statistic, I have taken a long hard look at each of my brothers and decided that two questionably have some autistic traits at least, and the other two are so far along the spectrum they have almost lapped me. The reason they haven’t been diagnosed? It’s never been that much of a problem for them; they’re just considered ‘typical men’.
Research has shown that the families of those with an ASC tend to have a higher ratio of male siblings to female siblings, thought to be a result of high testosterone levels of the parents at the time of conception; heightened levels of foetal testosterone has been a strong contender for the cause of autism for the last decade. This does not mean females with autism are walking around with a beard and a very deep voice (well not because of the autism anyway), but it would explain my lack of sisters.
One of the traits of autism is being good at systemising. Those with a systemising brain type have an intuitive drive to analyse the variables of a system, breaking it down into the rules that run it, and is again more typical in males. As children this can be seen in the games stereotypically boys choose to play, such as Lego building blocks, vehicles and weapons. As adults strong systemisers tend to lean towards careers in fields involving the construction of systems such as mathematics, physics and engineering. Generally there seems to be a trend with the grandfathers and fathers of autistic individuals being overrepresented in careers requiring a high level of systemising. Although two of my brothers are now engineers, my father worked in a paper factory his whole life, one of my grandfather’s was a decorator and my other grandfather seemed to spend most of his time being grumpy and occasionally mowing the lawn. I surmise from this that it’s not all about what field your career is in but how you approach it, I chose to go down the Psychology path, if I am being honest probably so I could systemise human behaviour into something much more predictable.
So, back to my main point, can it run in families? Apparently so.
Dr Hannah Louise Belcher 