Autism And Bullying

This week has been Anti Bullying Week in schools here in the United Kingdom. I therefore figured it would be timely to write a blog about autism and bullying. I have touched on bullying in other blog posts but it is such a huge issue that I felt it also deserves a blog post of its own.

In the recent publication by the National Autistic Society “B is for bullied”, estimates are that over 40% of children on the autistic spectrum have been bullied at school. My guess is that that estimate accounts for pretty much every child on the spectrum who was educated in a mainstream environment but I can’t be sure. The report details ways in which children with autism are excluded and belittled and the dreadful effects this can have on them, including attempting and committing suicide. It makes tragic but honest reading. I cannot do hyperlinks on my IPad for some reason so, if you are interested in reading the publication, Google autism and bullying National Autistic Society and it is the first link on the search results page. Of course, those statistics are only for the UK-worldwide, thousands of autistic people are bullied daily and, sadly for many, it’s not just a childhood experience.

There are a few reasons why I believe people on the spectrum are more vulnerable to bullying. Firstly, a lot of people with autism struggle to regulate their emotions and their responses to other people and thus give huge reactions when being taunted which bullies love to see. This seems to be common in people on the spectrum and I still struggle with this as an adult. For children, it is much, much worse because most of them have not yet learned that the reaction is what bullies look for. Secondly, it goes without saying that social awkwardness and social anxiety is a huge facet of our makeup and bullies love to target people who are different . Many children with autism have very unique and niche interests which can provoke bullying from other children and, sadly, sometimes adults too. Some people with autism have motor stims such as hand flapping or rocking which other people often fail to understand and instead mock. Some people with autism can be unaware of when they have said something hurtful so will unintentionally offend a classmate or a work colleague and then have all of that person’s friends turn against them.

Those are some of the reasons why people with autism are more vulnerable to bullying but what we really need to do is create an environment where these children feel safe and happy. The National Autistic Society is introducing an Autism Awareness week where children in schools across the UK, both primary and secondary, will learn about what the condition means in a practical, day to day sense. This is a good start and I hope that those children who feel able to will be able to speak out about their own experiences living with autism. People need to know that autism is not scary-it’s simply a neurological variant. Although people come across people with autism and Aspergers in their everyday lives, true awareness is still too low in my opinion. Schools also need consistent anti bullying programmes. I have read so many stories from parents on Facebook groups about children with autism who are targeted for years and, when they finally snap and retaliate, they are the ones who get into trouble. Violence is never the answer but bullying needs to be stopped before it gets to the point where violence occurs. In the ideal world, there would be no bullying at all but, sadly, in this world, it does happen so we need to be proactive in dealing with it. Some people with autism feel that the bullying is all they deserve-they need to be taught that it’s wrong and that they are entitled to be happy. A lot of people with autism, no matter what age or ability they are, struggle to communicate verbally, particularly in times of stress, so they need to be encouraged to report bullying in a different format such as letter writing if they are able to do so.

Some people sadly believe that bullying is “character building” and that it teaches the victim strength and determination to succeed. This is not true. Bullying often causes a lifetime of low self esteem, low self respect and mental health problems. The statistics are everywhere you look nd I have met many people in autism groups online who are living proof of that. Then of course there are the tragic cases where the bullying damages someone to such an extent that they commit suicide. Kennedy LeRoy, Gareth Oates and Maxwell Webb are just three cases I took from a Google search. There are hundreds more cases that never reach the news. Of course people without autism get bullied too and I am not dismissing their experiences. All bullying is wrong. People, please educate your kids about difference. If people start accepting and embracing difference during childhood, hopefully as adults they won’t feel the need to belittle those with a different outlook on life.



Growing Into Autism

Disclaimer-some of the views in this post may appear controversial but they are my views from growing up with Aspergers and from my interactions with other people on the autistic spectrum.It is not my intention to offend anyone.

One of the most common questions I hear in regards to the topic of autism is “Can you grow out of it?” It is assumed by some that those of us on the spectrum who hold down jobs, are verbal and went through mainstream education must have “grown out of” our autism. Of course we have not grown out of our autism-that implies that autism is a phase in life that you can get over, something you live with for a couple of years and then it miraculously disappears. Autism is a “cradle to grave” condition-it is lifelong. Our brains are wired differently so, from the moment we are born, we are processing information differently even if the more obvious symptoms of autism may not become apparent until the age of 18 months or 2. It may appear that some people have “grown out of” their condition and indeed I have come across people on the Internet who claim this to be the case. I would put forward the argument that, if they are genuinely autistic, they still have symptoms of autism even if the manifestation of those symptoms has changed. I would suggest that those who genuinely feel their autism has vanished were probably misdiagnosed in the first place as there’s a vast difference between learning to live with your symptoms and your condition disappearing completely.

A good example comes from my own childhood. When I was a young child, I used to run around in circles clapping over and over again. This is an example of stimming although, obviously, as a child, I didn’t know what stimming was-I just knew that I loved the sensation of running around in circles clapping. Over the years, this stimming behaviour has changed from running around in circles to pacing while having headphones in and listening to my favourite music. It offers a similar sensory feedback but is seen by other people as “less autistic” and more “acceptable”. Therefore, I probably appear to have “grown out of” this particular manifestation of my condition but all I’ve actually done is replace the behaviour over the years with another behaviour. Some people continue to stim in the same ways throughout their lives and are viewed as low functioning if these stims consist of certain movements that neurotypical people find pointless such as rocking or flapping their hands. However, people who stim through mannerisms such as clicking their fingers or playing with their hair are not viewed in the same way because their stims are seen as more “acceptable” and indeed neurotypical people usually do these things to help their concentration or relieve stress. Some of these people probably feel urges to rock or flap or hum but have had it repeated to them over and over again that they must behave in an “acceptable” way. This links in with the functioning level post I did a few weeks ago. From what I have seen, if someone with autism does not communicate verbally and is seen as low functioning, their stims are often just viewed as part of that diagnosis (although I have heard of people diagnosed with severe autism being told off for stimming in certain environments) whereas, if you have no associated learning disability, communicate verbally and are considered high functioning, stimming in exactly the same ways as someone who is considered low functioning is viewed by many as inappropriate. They don’t understand the reasoning behind why we need to stim and instead tell us over and over again how we need to change these behaviours. I know a lot of people with Aspergers who rock and flap but have to do it in private because it is not understood. The fact that this is expected of us by so many says more about society than it does about us “growing out of” our autism.

Of course, stimming is just one aspect of Aspergers and other conditions on the autistic spectrum and I have met several people with Aspergers who don’t stim, usually people who are not affected by the sensory aspects of the condition. There are other ways in which people appear to have “grown out of” their autism over time. A good example is eye contact. As mentioned on this blog before, the majority of the Western world are obsessed with eye contact. Over the years, those of us with Aspergers who realise how prized the ability to make eye contact is in our societies and know how those who don’t make eye contact are misjudged as dishonest or creepy teach ourselves ways to look at people’s faces so it appears we are making eye contact. Some choose to look at the nose, others choose to look at the forehead, others fixate on a point in the distance and some others make brief, fleeting eye contact and then look somewhere else and then back again for the entirety of the conversation. It may appear that we have “grown out of” this symptom but we still have the same discomfort at the thought of eye contact-we have just come up with clever disguises that make us appear “normal”.

Social skills improve over time in a lot of cases because we painstakingly learn them and commit them to memory. Instinctively, most of us still struggle with social skills but our learned behaviour gets us through social interactions with those we know.Every time I meet a new person, I have to remember this learned behaviour the way that someone might remember something academic-I have learned social skills in an academic way. Many of us have also been through various therapies or courses in social skills. The person with Aspergers who may appear socially confident has not “grown out of” their condition. What you see in this person is the result of years of hard work and learned behaviour.

I leave you with this statement-it is not so much that I or people like me have “grown out of” our autism. Rather, we have grown into it over the years. We have realised that it is a part of who we are and have embraced it. I am not saying that it is always positive but, once you accept your symptoms and your diagnosis, you grow into your condition rather than always feeling like it’s an awkward inconvenience. Remember that you are unique and worth something. Nobody is worthless in life.For those readers who aren’t on the spectrum, just remember that every person on the spectrum who appears to be so “normal” has worked for many years and been through a lot of pain in most cases to get to that point-please respect that.

Autism and Christmas

Firstly, I would like to apologise for not posting for a couple of weeks-I rely on a Wifi dongle to blog when I am at work as the 3G coverage is so limited and, although it might be enough to browse Facebook for 5 minutes, it is nowhere near reliable enough to write and then submit a blog post. Unfortunately my Wifi dongle ran out of bandwidth for the month earlier than I was expecting it to. I am now back at my mum’s where there is Wifi so I am back to blogging again!

As Christmas Day is almost here, I thought it would be nice if I wrote a seasonal blog post about how people on the autistic spectrum cope with Christmas Day. Christmas Day can be very challenging for many people with autism and their families. A lot of people with autism struggle to cope with changes to routine and Christmas Day is so often unstructured with extra people coming for lunch and dinner. One simple thing that really helps is pre warning your relative with autism that there will be extra people for dinner for this one day and perhaps writing a social story based on relatives coming to celebrate Christmas with you. If you will be spending Christmas Day at somebody else’s house, again warn your relative with autism that this is what will happen but remember to consider carefully when you will let them know. Some people with autism like to know weeks in advance but, for others, letting them know so early will just cause extra stress and anxiety, particularly if they have no concept of time.

Presents can also be a huge issue for those of us on the spectrum. A lot of us don’t like surprises and I remember reading a recent post on a Facebook group about a mother whose son had asked his parents to take him shopping so he could buy his own Christmas presents, help to wrap them and then unwrap them the same day because he couldn’t cope with not knowing what he might get. There are some people with autism who enjoy receiving the same gift year after year because it is predictable and comfortable. This also combines with lacking the patience to wait, something else which a lot of people with autism experience. I have read stories of parents of children with autism having to ensure that new toys that require batteries have those batteries in place before the present is opened as their children simply don’t have enough patience to wait for batteries to be found and then placed in the toy. They want to play with the toy immediately and reject it instantly if it appears to be broken, sometimes experiencing meltdowns because they don’t understand why it doesn’t work. Others on the spectrum, like myself, have no problems with waiting for presents but struggle with thanking other people for them. I will thank someone for a present and genuinely mean it but this won’t translate to my facial expression and voice which will remain deadpan and monotone. It is difficult for people to understand that actually we are very grateful for our presents, just not always very enthusiastic about it!

Christmas decorations can be a source of sensory overload to many people on the spectrum. Bright and flashing Christmas lights, a variety of coloured baubles and tinsel that gets absolutely everywhere can be fun for lots of people, myself included, but, for people on the spectrum who are hypersensitive to visual stimuli, they can be a source of great distress. I am not advocating that all households with an autistic person or people living in them never put Christmas decorations up but perhaps leave your relatives bedroom plain of decoration and only have certain rooms of the house decorated so their exposure to stimuli is limited. For some children on the spectrum, indeed young children in general, Santa can be quite frightening. Some children with autism have strong aversions to facial hair and some have a strong fear, even to phobia levels, of a particular colour. If the particular colour that causes distress is red, you won’t have much luck getting them near Santa!

Another source of stress at this particular time of year for some people on the spectrum is Christmas dinner. As mentioned on this blog before, a lot of people with autism have a limited diet and are often described as fussy eaters. Some people with autism will happily sit down to a Christmas dinner with their families-others will refuse to break their usual eating habits for Christmas Day and follow their usual diet. My advice is not to engage in any battle that will leave both of you feeling more upset and stressed. If they won’t eat Christmas dinner, don’t force them. Christmas should be about families being together, rather than everybody eating the same thing.

Overall, I would recommend trying to make Christmas as peaceful and stress free as possible for yourself and/or the person you know with autism. If you are on the spectrum yourself, respect your limitations at this incredibly social time of year. If you know that the effort of going to a Christmas party and socialising all night will leave you exhausted and unable to function the next day, consider whether it is really necessary for you to go. If you have a relative or friend on the spectrum, listen to what they are trying to communicate to you about how much they can cope with and what they can or can’t tolerate. This simple act of respecting limitations can make the Christmas period a lot less stressful for everyone.

I would like to take this opportunity to wish all my readers a very Merry Christmas if you celebrate it and Happy Holidays for those who don’t celebrate Christmas. I hope it all goes smoothly and I will be back next Monday for my last blog of 2014!

My research I did today on decision making in autism

Today I participated in a research study based in London. The study had been recommended to me by a friend of mine who had taken part in it a few weeks ago. There are two parts to the study-the first part focuses on whether people with autism have increased auditory perception and on the differences in how autistic people and people who don’t have autism respond to faces. The second part of the study focuses on the perceptual differences in autism and how these affect decision making compared to people without autism. It was a really fascinating day and I was paid for my time and my travel expenses which was a bonus!

I met the researcher in charge of the study at the local Tube station-I had requested to meet him there because my sense of direction is so poor that I don’t trust myself to navigate the streets of London even though the building was only a 5 minute walk from the station! In the first study, I had to put on some headphones and listen to some auditory recordings focusing firstly on just the women in the recording and then solely the men and answer some comprehension questions afterwards. It was really hard for me to focus on just the one group and the sounds were getting very jumbled in my head but I didn’t do too poorly on that task as far as I know. Then I had another task where I had to distinguish between a dog’s bark and a lion’s roar from a millisecond sound clip and then say whether I had also heard the sound of a car mixed in with them. I found this very challenging as, to me, the lion’s roar and the car engine sounded the same! I then had a hearing test and the results of that were that my hearing in both ears is very good. The second part of the task featured several screens of 2 playing cards with female faces on them and I had to choose which face I preferred and there were multiple options as to why I chose that face. Some were based purely on aesthetics whilst other options dealt more with how friendly the person looked. That was really interesting!

Then I went into the room next door and did an IQ test. I didn’t get the full breakdown but the second researcher told me afterwards that I had scored brilliantly on the verbal reasoning sections but my block design score was extremely poor as I only got one block design right. It was rather embarrassing being sat there knowing how the blocks are supposed to fit together but not being able to manipulate them in the right way. As I have mentioned on here before, I don’t like making mistakes and failing a task like this in front of 2 researchers was rather awkward. The researcher said at the end that my lack of ability in this task relates to my everyday problems with direction and spatial awareness and that I am definitely more skilled verbally. He said that the extreme discrepancy between scores made it difficult for him to find an exact match with someone without autism to assess our differences in decision making. Who said I make life easy? Lol! After the IQ test, I had to do a number accuracy game where I had to fixate on the centre of a computer screen and there were two boxes (one either side of the screen) with numbers flashing up too quickly to be calculated and I had to guess which box had the highest score. If my guess was correct, it flashed green and, if it was wrong, it flashed red. My accuracy for this ranged between 74% and 77% which was not too bad at all. I was able to look at both boxes at the same time and compare how big or small the figures were to try and work out which scored the highest. I then had to fill in a questionnaire aimed at finding out which autistic traits are most prominent in my manifestation of the condition and then I had another computer exercise where I had to look at a flashing circle and listen to a series of beeps and press one button if the sound and image were in sync and another button if they were not in sync. After this, I went back to the number accuracy exercise but, this time, I had to select the box with the lowest score. In the middle of this, the fire alarm went off so I was a bit distracted at this point! I then went back to the flashing circle and beep exercise and, after that, the experiment was over.

I walked back to the station with 2 of the researchers. I was having a fascinating conversation with one of the researchers, a lovely Greek man. He was telling me how he is trying to broaden autism research away from solely children and explore its impact on adults who have, in the majority of cases, learned how to socialise in what is seen as an appropriate way through learning it as an intellectual skill.

It was a fascinating day and I look forward to eventually receiving the results once the analysis has been done. I hope that it will help people understand more about the unique way in which we perceive the world. I would definitely be interested in taking part in other research studies focusing on adults with conditions on the autistic spectrum and hope to be involved in some more pretty soon.

Can Animals Have Aspergers Syndrome?

Disclaimer-this is primarily a jokey post. I do not seek to trivialise Aspergers by comparing the traits and symptoms to behaviours displayed by animals-this post is supposed to be taken in a light hearted way, as a bit of a joke. I believe this blog needs jokey posts sometimes! If you find yourself getting angry or wondering why Aspergers is getting compared to animal behaviour rather than other conditions, I would suggest that you are taking this post too seriously. It is not designed to offend-it is designed to make people laugh!

I have the book “All Cats Have Aspergers Syndrome” on my bookshelf. It was a birthday present of mine several years ago and I found it a fun read. It also struck true to my life because it was a running joke in our family that our female cat,Sasha, had the feline equivalent of Aspergers Syndrome. Sasha was always timid, shied away from interaction with humans and hated being picked up with a passion. Her immediate response was to curl herself into a ball and make a strangulated mewing sound. To put it simply, Sasha did not do interaction. I know that the stereotype of people with Aspergers shying away from interaction completely does not fit many people with Aspergers but, for the purpose of this post, I am using that stereotype. On a slightly more positive note, I have heard people with Aspergers say that they think dogs are likely to have Aspergers Syndrome because they are so loyal, a compliment to those of us with Aspergers who have that personality trait. I have my doubts. Dogs survival as a species depends on them being pack animals and therefore highly sociable, not exactly traits you’d find in 99% of people with Aspergers. I do agree with the loyalty factor though-most people with Aspergers are as loyal to their friends and family as dogs are to their owners.

There are, of course, other animals that behave in ways that, if they were human, would result in an autism diagnosis. I remember being on holiday in Cornwall with my family many years ago and the place where we were staying was near a field that had lots of cows in. On our second day there, we drove past the field and noticed a group of cows standing together and one cow standing on it’s own, completely separate from the others. I instantly felt drawn to this cow and felt it reminded me of myself, always standing on the edge of the social group. My family nicknamed it the “Aspergic cow”. All these years later and I still remember that cow vividly. It did it’s own thing, often on the other side of the field completely to the other cows. In so many ways, this cow displayed another stereotype of humans with Aspergers-it was a loner who preferred it’s own company. I have always been that way and it was comforting to know that other species experience this too.

So, purely as a joke, I would have to say that animals can have Aspergers Syndrome. Of course I do not mean this literally. I don’t believe that Aspergers exists for animals the same way that it does for humans. I do believe that some animals share some personality traits with people with Aspergers. Really all this proves is that animals have as much variation in personality types as humans do and that domestic animals need to have their personalities understood by their owners in order for them to be happiest, whether that personality may closely reflect that of certain people with Aspergers or not. Just because a pet may not be sociable or affectionate does not mean they do not deserve as much love and attention as other more sociable animals do. The same goes for us humans. I think we could all learn a lot from the unconditional love our pets give us. Never judge anyone on what’s on the outside-look at what’s inside and focus more on that.

The Relationship Between Autistic Spectrum Conditions and Music

Music features in my life so much that it is surprising that I have never thought to write about it as a topic on here before. Today, while walking back from my local shop, I had my IPod headphones in my ear as I always do when walking around and I suddenly thought “Why not write a blog post on music?” So here it is! Obviously people without autism listen to lots of music too but, for the purpose of this post, I am dealing with the way autistic people use music, particularly the ways in which I use music.

As I just mentioned, it is rare to see me without headphones in my ears. I listen to music whenever I am transitioning from place to place. Even when I’m staying at my mother’s house where there is a Tescos just over the road, a 2 minute walk there and back, I put my headphones in to go over there. I also always put my headphones in when I am walking to work-again, a 2 minute walk. People often comment on how they have tried to attract my attention but failed because I had my headphones in (I know this is something I need to work on!) Music has many functions for me, enjoyment being just one of them. Firstly, I frequently make up scenarios in my head and select specific songs to act as background music. These are often scenarios that I would love to see played out in real life but lack the assertiveness or courage to initiate myself. Who says autistics lack imagination? My mind is full of the most fantastic alternative scenarios-I just wish reality was the same!

Secondly, I use the repetition of certain songs as a stim of mine. I have an extremely high boredom threshold when it comes to repetition of songs-I think my personal record was listening to “Vindaloo” by Fat Les 200 times in a row before I finally became bored of it! My housemates at the time will attest to how relieved they were when I finally grew bored of it-at one point, they were so bored of listening to it through my laptop that they muted my laptop to get momentary peace (I am usually very considerate and listen to songs through my IPod so nobody else can hear them-I think, at the time, I was between IPods!) My friend had listened to it so many times as her bedroom was next to mine that she even started hearing it in her mind when it wasn’t even being played! I also use music to support my physical stim of pacing up and down from corridor to corridor relentlessly. I did this at boarding school and do it now in my staff accommodation at work-I regularly bump into people while pacing the corridors. Luckily I live with nice people who just know me as eccentric and see this behaviour as an outward manifestation of this eccentricity so they aren’t too bothered about it.

Thirdly, and I would say most importantly, I use music as an emotional outlet. Like most people, autistic or not, I listen to sad songs when I am going through a tough time, angry songs when something is bothering me and happy, upbeat songs when I am in a good mood. To me, the lyrics of the sad songs, in particular, seem to express exactly what I want to express so much more eloquently than I can. Music encourages my emotional energy to be expended so that I can move on from whatever is bothering me and start again. I find this hard to explain but hopefully someone reading this understands what I mean.

Finally, I like the predictability of music. I can always control my IPod, even when it seems everything else has gone wrong at that time. Music is comfortable and safe.

I know other ways in which people with autism use music. Most of them are not specific to autism but autistic people do benefit hugely from them. An example is using classical music to aid sleep, something a lot of people with autism do, in my experience. Songs can also be great transitional cues to support someone with autism onto the next activity. This technique is used a lot in my own workplace and it really does work so well! Another huge way in which music is used (and sometimes I use music in this way myself) is to regulate sensory input. It is better to be hearing controlled noise in your ears than to be hearing the multitude of unwanted noises in, say, your local supermarket. Who wouldn’t choose to eliminate distressing noises with the sound of your favourite song?

There are also people with autism who have an affinity for learning musical instruments. Sadly, I am not one of them. I appreciate lyrics more than melody and I also have zero sense of rhythm. I also have fine motor coordination difficulties that make learning an instrument tricky-I did take piano lessons in primary school for a brief period but never got any good at it.

Overall, I would say that music has huge benefits for people across all levels of the autistic spectrum. I am not talking about the loud, pounding music you find in nightclubs-I am talking about personalised music. I believe that, used properly, music promotes calm and relaxation, allows the individual with autism to express and regulate their emotions and allows them to regulate sensory input. It can also be used to support transitions. Plus it’s really fun to listen to! Please respect the way we use music and, as long as it’s not harming anyone, don’t try to change this. Music can be so healing for our emotions-it can be a true saviour! I would love to know the other ways in which autistic people use music-if there are any I haven’t mentioned, please leave me a comment-it is an area I would love to learn more about!



My views on the latest autism statistics

A couple of days ago, new autism prevalence statistics were released by the US Centre for Disease Control and Prevention indicating that one in sixty eight children have autism ( A close friend of mine who also has Aspergers Syndrome shared the link with me on my Facebook page. Being completely honest, reading that article made me quite angry and below I will explain exactly why (some of this overlaps with post content from a previous blog post “The Cure Debate” but these are issues that I feel need addressing).

Firstly, I do not see why the issue of autism prevalence in the United States is being discussed by an organisation that has “Disease Control and Prevention” in its title. The dictionary definition of a disease is “a disorder of structure or function in a human, animal, or plant, especially one that produces specific symptoms or that affects a specific location and is not simply a direct result of physical injury”. Now maybe it’s just the inner Aspergers pedant in me but the variety of conditions that make up the autism spectrum cannot be traced to a single disorder of structure or function that produces specific symptoms. As anyone who has any knowledge, either personal or professional of autism, will be aware of, no two people with autism are the same. Their symptoms are often hugely varied from each other and years of research has failed to pinpoint an exact cause for why the brains of people with autism and associated conditions are “wired up” the way they are. Also I think it may be a cultural difference but, in the UK, most people use the word “disease” to mean something contagious, not the image I want people to have of autism in any way. To me, this negative association is backed up by the words “control and prevention”. Autism is not a pest that you can eradicate and, in my opinion, nor should you seek to but that’s something I’ll get onto a bit later.

The article also doesn’t distinguish between the different conditions that make up the autism spectrum. Are they referring only to classic autism (sometimes referred to as Kanners Syndrome as it was first written about by Leo Kanner) or are they including the higher functioning variants of the condition as well? I must clarify that, to me, functioning labels matter little as I am all too aware that two people on opposite ends of the spectrum can experience the same symptoms but are separated diagnostically purely because of an IQ score or the development of language. I have met people with Aspergers who have the same sensory issues and behaviours arising from these sensory issues as people diagnosed with severe autism and associated severe learning disabilities. The only reason I am questioning this is that both Aspergers and high functioning autism are, certainly in the UK, becoming widely recognised as potential diagnoses when children are struggling socially in school and so I would guess (and it is purely a guess so may be completely wrong) that these make up the bulk of new diagnoses and the bulk of the increase in diagnosis rather than solely those with severe autism which is what some people would have you believe.

Also the article talks about treating the issues that autism causes but they write about doing this through “combating autism”. Again, this is language that indicates war-not exactly conducive for the self esteem of someone with autism (and, despite what research may show, having worked with children and adults with severe autism and learning disabilities for the past five years, I can say for sure that they do recognise attitudes in their family members and caregivers and respond accordingly). I accept that there are issues often associated with autism that do make life hard and exhausting both for the families and for the people themselves-insomnia, erratic sleeping patterns, a limited diet, associated disabilities, associated conditions such as epilepsy, immune conditions such as eczema, asthma and various allergies, stomach conditions and challenging behaviour, often resulting from anxiety and frustration. In my work, I use therapeutic techniques and administer medications that help to alleviate these symptoms as much as possible. However, I also find what helps is understanding. A lot of stress and anxiety in autism can be alleviated if the person communicating with them tries to “get inside their head” and think why they are behaving in a certain way. People with Aspergers Syndrome are often highly adept at finding coping mechanisms-we have to be to survive in this world. With people with severe autism, we need to help them find the coping mechanisms that work for them. It is a long, slow process and can be hugely frustrating because triggers for meltdowns and shutdowns can change over time so what used to bother them five years ago doesn’t bother them so much anymore because they have been taught coping mechanisms to deal with it but something they were fine with last week suddenly is a source of extreme anxiety. However, once the additional symptoms are being alleviated or dealt with, you can see their true personality and I can tell you one thing-all of the autistic people that I have worked with and met personally over the years have been huge personalities with unique and special characters. There are positive sides to autism and I know it can be hard for the parents of a child with severe autism and challenging behaviour to remember what those positives are when it is 3 am and they haven’t had any sleep for the past week but they are there. Most parents of children with autism, from what I’ve seen, would not exchange their child for anything-they just want to deal with the problematic symptoms which is something I don’t have an issue with-I just think people need to watch the language they use when they refer to this goal.

Also people have a stereotyped view of autism-as mentioned before, no two people with autism are the same. I have worked with children with autism who have not needed strict routines or who present with few sensory issues when most people would see these two things as core aspects of anyone with autism. I read in a TV magazine today that Horizon programme is going to focus on autism this coming Tuesday. In the blurb, one particular comment struck me-“Why do they often fail to understand humour?” Perhaps this question should have been phrased, “Why do they often fail to understand word based humour?” In my experience, a lot of autistic people find humour in slapstick comedy and practical jokes. I am willing to bet that every autistic person in this world, even those who are deemed to be completely in their own worlds, have something that makes them chuckle. Therefore, how can you say that they fail to have a sense of humour? What you really mean is that they don’t get YOUR sense of humour. There are also people with Aspergers and high functioning autism that have mastered sarcasm and can use verbal humour very well and understand it. I used to have a very literal sense of humour-my jokes always had the correct answers as I had worked the punchline out myself-does that mean that they were not funny to me? Not at all-I still laughed at them!

My final issue is that they seem to focus purely on the environmental factors when it is strongly suspected that autism has a strong genetic component. I remember having a conversation with someone once who said that the reason they thought autism rates were rising was because the social awkwardness that is inherent in Aspergers Syndrome is actually becoming a lot more tolerated in society compared to how it was 50 or 60 years ago and so people with Aspergers Syndrome are now seen as potential “mates” where before they often weren’t. It was an interesting point of view although a bit cruder than I would have liked. There are lots of parents of children with autism who have Aspergers Syndrome or high functioning autism themselves-would people like us to stop breeding so autism can be eradicated? Extreme view, I know, but I’m playing Devils Advocate here-where does this sort of thinking stop?

I do actually agree with the essence of what the article is trying to say-that there needs to be better support for vulnerable people with autism and that this needs to be ongoing support rather than finishing when they leave school/child health services. However, I believe this can be achieved without aggressively seeking to combat autism. Yes, autistic children are often horrendously bullied by other children, either at school or in the community. However, setting up an Autism Awareness programme and educating these children about autism and difference could make a huge difference. I know that some people, for various reasons, will never change their stance on autism and will always find it fun to taunt them but, for most people, particularly children, their behaviour is borne out of ignorance and, if they can be educated early enough, they may surprise everyone and turn out to be thoroughly nice people. Yes, there are high levels of comorbid conditions such as depression and anxiety in people on all levels of the spectrum but how much of this is down to living in a world that is insistent on changing them and forcing them to fit in? I have seen autistic people being asked to stop self stimulating when it is the only thing that is keeping them from having a meltdown due to stress. Live through decade after decade of this and is it really such a surprise that so many people on the spectrum have attempted or go on to commit suicide? I support change for people with autism but I also believe firmly, and will do until the day I die, that this can be achieved without making people feel bad about being autistic which is what statements such as “Combat Autism” do (and, believe me, even people with severe autism can feel bad about themselves when they pick up from other peoples attitudes that it is always them with the problem). I personally think that autism is definitely here to stay but that isn’t such a bad thing. Embrace it and you will see that autistic people actually have a lot to teach the world. Please, please think about the language you use and think about the lessons you could actually learn from the people you know with autism, whether verbal or non verbal. Try and get into their minds and see the beauty in their unique way of thinking.

The Blame Game

I have written on several occasions on this blog about people not knowing how Aspergers Syndrome presents itself. Today I am writing about people who know all about Aspergers but twist their knowledge in order to blame those of us with Aspergers when their behaviour upsets us. To me, these people are ten times more destructive in our lives than the ones who lack awareness of Aspergers as at least the latter group can be educated. The first group have no interest in changing their views. 

I should point out at this stage that, proportionately, the number of people who take this approach is small but large enough to cause problems. Throughout my life, I have come across people who behave in offensive and obnoxious ways only to say, when I have become upset by this, “It’s your Aspergers! You’re taking it too personally!” Or variations of the above sentence. From reading several online discussions based around this topic, it is plainly obvious that other people with Aspergers have experienced this too. 

I am willing to accept that I have difficulties interpreting people’s body language and I often struggle to get the contexts and nuances of conversation. However, I can tell when somebody is being obnoxious or disrespectful and, to me, using someone’s condition as a scapegoat to absolve yourself of responsibility for your own offensive behaviour is simply cowardly. Yes I am aware that I often take things personally but I am usually extremely tolerant of other people so, for someone to upset me, the boundaries have been pushed too far. This has nothing to do with Aspergers and everything to do with treating other human beings with respect and compassion. 

This attitude that any offence taken is the result of an individual’s Aspergers Syndrome is completely the wrong attitude to take. If offence is always blamed on our communication difficulties, it conveniently means that the onus is on those of us with Aspergers to “toughen up” rather than on the other person to behave in a respectful manner. People will never change their manner or their personality if there is a scapegoat they can lay the blame on instead. What better scapegoat than an autistic spectrum condition which causes difficulties with communication and interpretation? 

Of course there are occasions where people with Aspergers and people without the condition misunderstand each other in conversations and in daily life and that is something completely different to what I am talking about in this post. There will always be misunderstandings as the way we think and perceive the world is different but what I am referring to is obnoxious behaviour, including bullying. We have feelings and emotions like everyone else in this world-please respect that. If we are upset at something that has been said to us, speak to us, listen to our answers and try to understand why we are upset rather than just blaming our condition in a bid to dismiss our offence as not real or worthless. I would never do that to you so please treat me and others with Aspergers Syndrome with the same respect. 

“Stop taking things so literally!”

I have lost count of the number of times someone has said (often shouted, to be honest!) the above phrase in sheer frustration at the fact that I am not grasping the intended meaning of what is being said. I can appreciate how frustrating it must be to talk to someone who continually misunderstands what you are saying to them but the point that I am aiming to explain in this post is that it is equally as frustrating, if not more so, to a lot of people with Aspergers.

Without meaning to brag, I consider myself to be fairly intelligent so I get annoyed and angry with myself when I cannot understand the deeper meanings behind what someone is saying and have to ask for clarification or suffer the consequences of such a misunderstanding. Over the years, I have learned the intellectual and logical reasoning behind a lot of the nonsensical sayings that people love to use, such as, “Cutting off your nose to spite your face!” and, “Don’t bite my head off!” Indeed I do, on occasion, use statements that are not literally true and I also use sarcasm on occasion. What I tend to struggle with now are instructions that someone is giving me if they do not make them specific enough and phrases that have more than one intended meaning. I know that some people may consider me to be deliberately obtuse but this is not the case. I do genuinely want to pick up intended meanings instinctively, the way most people I know without Aspergers do. Trust me, the withering looks you get that make it plain that you are considered to be wasting someone’s time are not fun.

Of course, being literal minded has its funny side as well. One particular incident pre diagnosis sticks in my mind (you see, there goes the non literal saying!)  As a child, I was a frustratingly slow dresser, often delaying everyone else in the family when it came to being ready to go to school. On one occasion, I was standing outside my bedroom door half dressed. It was time to be leaving for school so my mother said, “Brush your teeth now and get dressed in the car!” I willingly obeyed what she had literally said. She had not said “Finish getting dressed in the car”-she had said “get dressed in the car” so, without questioning it, which, in hindsight I should have done but I was only seven, I took all of my clothes off and went to brush my teeth. The next time my mum came to check on my progress, I was standing with no clothes on ready to go and get dressed in the car. Of course, she had no idea what my thought process was at that point and got hugely frustrated with me. I remember thinking that it was very unfair that I had been told off when all I had done was follow the orders I had been given. Looking back at it now, it does make me and my mum laugh and I’m sure that it will be family legend for a long time but, at the time, I could not understand why obeying orders got me into trouble. These days, I am not so overly literal and would know to ask for clarification on what was actually expected of me but, at seven, I didn’t even know I had Aspergers let alone how to deal with the symptoms of it. That level of insight comes after years of living with a condition that gives you a totally different outlook on the world.

Please, if you know someone who takes phrases literally, don’t mock or belittle them and try not to get frustrated with them. To admit that the instruction they are being given is not specific enough for them to follow, knowing the reaction that may await them, takes courage. Would you rather they ask and complete the task to an acceptable level or that they don’t ask  and thus fail the task? A little bit of patience and understanding goes a long way.

I will not be writing on this blog until next Friday so Merry Christmas everybody. I hope your festive day is filled with fun and joy.

My review of the Curious Incident Of The Dog In The Night Time theatre production

Yesterday evening, I saw The Curious Incident Of The Dog In The Night Time theatre performance at the Apollo Theatre in London with my mother. For those who don’t know the story, The Curious Incident Of The Dog In The Night Time was a short novel written by Mark Haddon in 2003. The story is written through the perspective of a 15 year old boy with Aspergers Syndrome (although the words Aspergers or autism are not mentioned in the book at all), Christopher Boone, who, admittedly rather stereotypically, displays an extremely high level of logic and intelligence, particularly in the areas of Maths and Science, and struggles to understand other people’s communication which can lead to him lashing out at people as he hates being touched and, during the story, several policemen and concerned passers by try to move him by placing their arms on him. Christopher finds his neighbour’s dog, Wellington, dead in her garden having been killed with a pitch fork and decides to investigate who killed him. During this investigation, he also comes across letters hidden in his father’s wardrobe that were written to him by his mother, who he had been told was dead, and kept from him for 2 years. His father then admits that he had killed Wellington after an argument with the neighbour whom he had been dating. Christopher then panics and leaves to find his mother and her new partner, Roger, who was the husband of the neighbour whose dog was killed, in London. I won’t give away the whole story from that point but there is a happy ending for Christopher.

The play itself has won 7 Laurence Olivier awards and is highly praised by theatre critics. I will start with the negative point that I picked up on and will finish with the positive.

The first aspect of the performance that I didn’t agree with was that all the staff were wearing T shirts with the slogan, “I find people confusing”. This is the main phrase associated with both the book and the play and I know that it is a promotion tool to have all the staff wearing these T shirts but the logical part of me couldn’t help wondering why they were wearing these T shirts when they probably understand people ten times more than the average person on the autistic spectrum. I guess it’s my own literal thinking that makes me wonder why someone would wear a T shirt with a slogan on it that is not true to them. I liked the T shirts themselves and, if they had one in my size, would have bought one but that’s because it’s an aspect of Christopher’s life that I can identify with and understand. I guess the reason why I saw the wearing of these T shirts as a negative point can be explained by the fact that I dislike people trivialising what it means to be on the autistic spectrum and explaining away autistic traits as traits that everyone experiences at certain times (but that’s a post for another day!) It just made me feel slightly uncomfortable.

Now, onto the positives, which are many and make the show absolutely brilliant and amazing to watch.

I liked the fact that the production team use strobe lights and loud crashes and voices talking over one another at an increasing volume to illustrate to the audience, in a way that they can understand, what Christopher experiences when his senses are being overwhelmed. However, I do feel that any person on the spectrum who does have extreme sensory sensitivities (as I have mentioned before, mine are not extreme) would probably be unable to sit through the show because of those effects which would be a shame because there are so many aspects of Christopher’s life that would resonate with a lot of people on the autistic spectrum.

I thought Mike Noble, who played Christopher, portrayed someone with high functioning autism fantastically. He must have spent a long time studying autistic behaviours to be able to portray them so vividly. The constant stimming with his fingers is one example, as is twisting the tassels on his hoodies. With me, it’s constantly putting these tassels in my mouth and chewing them until they disintegrate but the reason behind it is the same in both cases-it is something to concentrate on while having to do something out of your comfort zone, such as speaking with strangers or carrying out a particularly complicated task. He also speaks incredibly literally and points out that he notices all the tiny details that most people never pick up on. Whilst not all people on the autistic spectrum will share Christopher’s traits (indeed there are some that I don’t share), a fair few of his traits will be able to be identified in the lives of other people with autistic spectrum conditions.

I also thought that his father, Ed Boone, played by Trevor Fox, was extremely realistic in his portrayal of someone bringing up a child with Aspergers as a single parent. He displayed frustration and compassion in equal measures and there was one scene where he was extremely tender towards Christopher, after Christopher had been sick down his clothes and needed to be stripped out of them. His dad explains that he needs to touch him but that it will be OK and then goes on to remove Christopher’s hoodie and T shirt with such gentle precision in order to not agitate him. My mother said that she could relate very well to Christopher’s dad, in particular, so it is a show for the parents of people with autistic spectrum conditions as well. There was one light hearted moment where Christopher is talking about his obsession with being an astronaut and his dad interrupts him, saying, “Christopher, mate, can you just give it a break, please?” That took me back to my childhood when I would talk about the same topic over and over again because I was so fascinated with it and could not understand why nobody else was until somebody would tell me to give it a rest. Another aspect that really resonated with me was when Christopher drew a face with a raised eyebrow and pointed out how it could be a sign of flirtation or that somebody finds you amusing-I understood that completely as it is so true that facial expressions mean different things in different contexts and that is why they are so hard to read accurately.

The logistics of the performance were fantastic also. Certain members of the cast passed right in front of our seats to gain access to the stage which was really good-I have never been to a show where they have done that before! The props were basic but the actions of going through doors and looking under his father’s bed were supported by people on the stage who acted as doors and held up items that were found under his father’s bed. The set itself was a depiction of how logical Christopher’s mind is with no colour other than what the cast were wearing. Christopher draws on the set with chalk to solve the mystery of who killed Wellington. Some of the seats in the audience were covered with white sheets and labelled as “Prime Number Seats” due to Christopher’s obsession with prime numbers. I was quite jealous that I wasn’t in one!

Overall, I thought the play was fantastic. Christopher is not typical of some people with Aspergers Syndrome but, as Mark Haddon himself pointed out in the programme, “I’m a little uneasy when, as occasionally happens, it is used as a textbook, and handed to policemen or social workers to give them some insight into the behaviour of people they might come across in their professional lives”. He freely admits that there are people on the autistic spectrum who cannot identify with Christopher (and I have had conversations with a couple of them about the book where they have said they hate it because the beahviour in the book is so unlike them) but points out that people assume “that there is indeed a correct representation of someone with the condition”. He does understand that Aspergers affects different people in different ways and interacts with other factors in an individual’s life to have its own unique manifestation. No two of us are the same!

To conclude, I would recommend this play to anyone but, be warned, it is highly emotional and intense viewing! I think everyone who lives with autism/Aspergers, either themselves or through a family member, friend, student etc, could probably recognise some of Christopher’s traits and begin to understand more exactly where they come from and why they occur. It is a fabulous play and I would definitely go and see it again!