The A to Z of Aspergers

I got the idea for this blog post from a blog that I follow on here. This blogger wrote a blog post on the A to Z of beauty guidelines and, at the end of the post, said they would like to read an A to Z from other bloggers on any subject that fascinated them so I decided to write an A to Z of my personal experience of Aspergers. This blogger follows me on here so I hope they like it and I hope the rest of you do too. As ever, this is my personal experience of Aspergers so it may not be the same for everyone but I hope it helps to explain more about the condition.

A is for anxiety. This is one of the biggest issues inherent in Aspergers, particularly in my case. If there is something to be anxious about, you can bet that I will be anxious about it. Some things I worry about would worry anyone, such as job interviews, but other things I worry about would be dismissed by most as trivial such as an honest mistake I made years ago which still has the power to keep me awake at night all these years later. Most people have felt anxious in their lifetime over certain circumstances but I live with a different, more pervasive form of anxiety, which sometimes, though far less regularly than it used to, climaxes in panic attacks over things that most people would dismiss as not worth bothering about. I have been dealing with and managing my anxiety since childhood and I understand it logically very well now but that doesn’t always translate into being able to keep it down to a manageable level although, as said, it is so much better than it used to be.I can now make routine telephone calls such as booking a taxi or a GP appointment without having to encourage myself into doing it for half an hour beforehand.

B is for biting. One of my more problematic mannerisms (and we will come on to more of those in the next letter) is biting. I don’t bite other people (which you will be pleased to know) but am constantly biting my nails and, when someone says or does something that annoys or angers me or if I am very anxious about something, my first instinct is to bite my fingers or knuckles (although I do pick at my skin a lot when I’m anxious as well but not when I’m annoyed). I distorted my teeth when I was younger through constantly pushing my thumb behind my top front teeth and pushing my thumb forward leaving the indents of my teeth on my thumb. The biting progressed on from this. This is something I am trying to work on as I know that it’s not a healthy behaviour and I know that I need to find a way to let people know I am unhappy with them verbally rather than taking it out on myself.

C is for compulsive mannerisms. These are physical mannerisms that I feel compelled to carry out. My most longstanding one is that, when I am reading or having a conversation with someone and numbers are mentioned, I have to count the numbers that I see/hear on my fingers, no matter how high they are. Sometimes it makes my fingers ache but I feel ill at ease if I cannot do it or am prevented from doing it. Another physical mannerism that a lot of people don’t understand and see as time wasting is that, after I have read my daily newspaper, I like to read the articles again and circle each line. I find that this helps the information to stay in my mind but I also like the feel of the repetitive wrist motion I make when doing this. These mannerisms are things I find it very hard to explain to people who aren’t on the spectrum but the compulsion behind the mannerisms is shared by many people on the spectrum, even if the mannerisms themselves are different.

D is for depression. A lot of people with Aspergers live with depression. There is a lot of debate as to whether the difference in neurological wiring that causes Aspergers also causes someone to be more susceptible to depression or whether the depression is purely a symptom of living in a world that we are not suited to and that we struggle to understand and vice versa. I personally think it is the latter-I think the reason why so many people on the spectrum suffer with depression is because we strive for acceptance but struggle to get it because society has so many rules and boundaries that we get wrong. The loneliest feeling in the world is wanting desperately to fit in but knowing that you don’t.

E is for executive functioning issues. These are the issues with planning and preparation that can make a lot of people with Aspergers appear very disorganised or leave people baffled as to why someone can hold a university degree but not be able to cook a meal with more than one component as they struggle to time every ingredient to be ready at the same time. A very frustrating aspect of Aspergers for a lot of people and not helped by people assuming that we are just stupid or lazy.

F is for fixations. Some may say that fixations are the same as obsessions but, to me, fixations are more negative whereas obsessions are very enjoyable. I tend to fixate on one thing that someone has said, which is usually negative, even if the rest of the conversation we had was positive. I then mull this over and get stuck in a repetitive circle of remembering it, becoming anxious about it and then over thinking it far more than I need to.

G is for gastrointestinal issues. A lot of people on the spectrum suffer with gastrointestinal issues such as constipation, diarrhea, stomach aches and nausea. Sometimes this is due to a limited diet but I believe a lot of it is down to anxiety and stress. I always feel anxiety in my stomach and, as I am almost never completely relaxed, it makes sense to me that I have a lot of stomach issues from this.

H is for honest. The first positive aspect of Aspergers to be included in this blog. I am a very honest person. I don’t see the point in lying or deceit. I think the world could do with a lot more honesty and would be a lot nicer and a lot easier if everybody was honest with the people in their lives.

I is for insomnia. A lot of people on the spectrum experience insomnia of different types. My form of insomnia is struggling to get to sleep in the first place. It can take me several hours to get to sleep but, once I am asleep, I tend to sleep through until my alarm goes off or until I wake up naturally if it’s not a work day. I know that I don’t get enough sleep. I usually get about 5 hours a night when I’m working. During the holidays, I get quite a bit more and can sleep up to 12 hours at a time!

J is for jealousy. It may not be a popular view amongst people on the spectrum who like to focus on the positives of their diagnosis at all times but I believe that a lot of people with Aspergers are jealous of people without the condition. I know I certainly am as they appear to be able to achieve in social situations as naturally as they breathe whereas I have to work extremely hard to cope in these same situations. I know that jealousy is a highly unattractive trait in a person but I can’t always help it.

K is for being knowledgeable about ourselves. If you have a friend or family member who is on the spectrum, please listen to them, whether this is listening to what they are saying to you verbally or listening to what they are communicating via their behaviour. Like a lot of people with Aspergers, I am very self aware and I know what works for me and what doesn’t. Please know that we are the experts on how our autism affects us and it is different for each person. Listen to what we are communicating to you and trust us. We know our autism-please respect that.

L is for literal thinking. This is pretty self explanatory and I don’t believe it needs much explaining other than to say that most people on the spectrum are literal thinkers so be careful how you phrase instructions!

M is for mood swings. I don’t mind admitting that my mood tends to swing a lot more than most peoples. I watched a documentary recently about people living with bipolar disorder. One of the men featured on the documentary had Aspergers too. I found it fascinating watching him explain how his mood was so heavily influenced by the attitude of the people around him. I am the same. I can go from very, very happy to extremely low in the space of seconds based on the people around me and it’s good to know that there are other people the same out there.

N is for the nagging internal voice that most of us have. The voice that comes in when you are feeling happy about surviving a social occasion to remind you that you were bound to have made some horrific social faux pas which everyone was simply too polite to point out to you. I read a book several years ago by a woman who has severe depression. One of the chapters focused on her “chatterbox”, the internal voice that is determined to bring you down. This really touched me as I have my own “chatterbox” which I frequently have to fight against in order to prevent a downward spiral of negative thoughts.

O is for OCD, something which a lot of people on the spectrum live with, although not always to a diagnosable level. There are different forms of OCD but I do believe that our obsessive natures make us more susceptible to OCD.

P is for perfectionism. A lot of people with Aspergers are perfectionists. I am a perfectionist myself when it comes to certain areas, such as my paperwork at work. I like everything to be very detailed and clear and I like to make sure everything is spelled correctly. I feel very uncomfortable when I read something with spelling mistakes even though I know there are many reasons why someone may struggle with spelling and that it is the content that matters most-I just can’t stop myself feeling uneasy.

Q is the only letter I couldn’t couple with a trait. If anyone can think of one, I would love to know!

R is for ritualistic. This couples together with obsession and also crosses over with OCD traits. Rituals and routines keep me sane and keep me functioning. Without this structure, I don’t know what to expect and can’t cope.

S is for strengths. This blog post may be more negative than positive but everybody on the spectrum has a lot of strengths too. My main strength is my fantastic long term memory. My colleagues at work constantly point out how I remember the tiniest details in life and I wouldn’t have it any other way. Celebrate your strengths-you wouldn’t be you without them!

T is for terrific. No matter how low you may feel, you are terrific and special. Focus on that, no matter how hard things get-better times are ahead.

U is for unique. A lot of people use the term “unique” in relation to me-I take it as a compliment. I know that my mind works differently to most and sometimes that causes me a lot of stress but I wouldn’t have it any other way!

V is for versatile. A lot of people on the spectrum are highly versatile even if we may not seem it when you first meet us-we have to be to survive in this puzzling world!

W is for watching others constantly. I am constantly watching people in social situations and trying to learn from this. It doesn’t always work but I do believe that, over the years, this method has helped to greatly reduce the amount of people I offend through social mistakes.

X is for X ray attention to detail. I mentioned this when I wrote about strengths. A lot of people on the spectrum notice the tiniest details. Life needs people who notice the small details that others overlook.

Y is for yo yoing self confidence. This couples with mood swings a lot. When I am in a good mood, I feel very confident and can recognise how much I have achieved over the years. I hold a university degree when it was once thought that I would be better off in a special school, I have held a job for the past six years when I was once thought unemployable and my blog has been read in 100 different countries. When I am in a low mood, I can’t recognise these achievements at all and just focus on the disappointments I have experienced in life. I think this is common with everyone-everybody is more inclined to dwell on the negative when their general mood is low so it’s not a trait specific to Aspergers but it does begin with Y so I thought it was worth mentioning!

Z is for zeal. If there’s one thing lots of people on the spectrum have, it’s zeal-sheer determination. I am a very determined person and I know that, no matter how long it takes and how many disappointments I experience on the way, I will eventually achieve everything I set out to do.

Well that concludes my A to Z of Aspergers. A mixture of positive and negative but always honest. I hope you have found it interesting.

My Aspergers Radar

Like a fair number of people with Aspergers, I have a very effective radar for spotting other people with Aspergers. This is most evident when I am watching programmes on TV. There was a documentary last year which featured several teenagers who were approaching their fourteenth birthdays and had been followed from birth to see how their lives progressed over the years. There was one boy on the documentary whom I could instantly tell had Aspergers before he mentioned that this was his suspected diagnosis. It wasn’t just the fact that he spoke about his history of poor social skills and not knowing how to play with other children in the school playground-it was his physical awkwardness too and his mannerisms. Sure enough, he mentioned that Aspergers was his suspected diagnosis although his family had never gone down the formal diagnosis route. While he may not be officially diagnosed, it was clear to me that he has Aspergers. I have also watched programmes following families on the route to a formal diagnosis and been able to tell instantly that the professionals were going to give an Aspergers diagnosis.

I am also very good at spotting other people with Aspergers in my daily life too. I guess this comes from being so self aware about my own manifestation of the condition and the mannerisms it gives me that I recognise those same mannerisms in other people. However, sometimes I have had suspicions that I am talking to someone with Aspergers Syndrome even when they present very differently from me. I used to attend a support group for students with Aspergers when I was at university and, in my first week there, I would often see students around campus and suspect that they had Aspergers and then see them at the first meeting.

I am not sure what exactly has made my radar so strong and why so many other people with Aspergers also have effective Aspergers radars-maybe it’s a survival mechanism which draws us towards other people who also have trouble fitting in. Everybody needs to feel they belong somewhere and, for a lot of people with Aspergers, the only setting in which they feel they truly fit in rather than merely being tolerated is with other people with Aspergers. Therefore, on a subconscious level, we are drawn towards other people with Aspergers. This happens before we even know what Aspergers is. We often realise we are different many years before diagnosis-I knew I was different from my first day at primary school, three and a half years before I was diagnosed and I was lucky to be diagnosed in childhood. I have read stories online of people who have not received a proper diagnosis until mid adulthood but have always known they are different and seek out similar minded people. I believe it’s an instinctive process but I would be very interested to hear from other people with Aspergers whether they also have a radar for spotting other people with the condition, whether diagnosed or undiagnosed.

I leave you all with one thought-are these radars innate or have they developed as a consequence of the level of isolation most people with Aspergers experience in society? I personally believe mine is innate-I’ve always been drawn to other people on the spectrum but perhaps it is also due to needing that setting where, for a brief period of time, I can actually feel like I’m not different at all. It’s an interesting debate and I would welcome my readers thoughts on this topic.

Aspergers and Fear of Authority

After a little break to get some more ideas, I am now back blogging but will be doing so on a fortnightly basis.

Recently, in the UK, there was a tragic case involving a teenage boy on the autistic spectrum who inadvertently opened a link on his computer which turned out to be a scam which locked his computer and demanded £100 before it could be unlocked or the police would take action as illegal pornographic sites had been accessed. The email appeared to have been sent by Cheshire Police and Joseph became so anxious and distressed over this email believing that he would be arrested that he committed suicide. The full news article is here

This is the sort of case that people who aren’t familiar with how people with autism think fail to understand. They don’t understand how anyone could fall for such a scam or how anyone could believe that detectives would email them or demand money. As someone with Aspergers, I can understand exactly what went through Joseph’s mind that tragic day. Most people on the spectrum have a fear of authority. To Joseph,it’s highly likely that the idea of having to speak to the police would have felt like the scariest nightmare he could think of. I can guess that because I know how I would feel if I were to ever believe I was in trouble with the police. Most of us are also very honest and don’t understand why people would scam others and how people can be so dishonest so it would have been perfectly feasible for Joseph to believe that the email was genuine. People might say he should have looked at it logically but people on the spectrum don’t think logically when they are anxious. Furthermore, in one article I read, it had claimed that Joseph, like the majority of teenage boys out there, had accessed soft pornography websites in the past so, in the spiralling anxious thought processes occurring in his mind that day, he could have easily thought that the police were referring to these websites. Like most autistic people, Joseph had a tendency to take language literally so it wouldn’t have occurred to him that the email was fake. Another article I read spoke about how his family were in financial difficulties which he was taking a job to help with so, in this context, a demand for £100 is even more anxiety provoking.

Several years ago, I experienced intense anxiety around the idea that I would be arrested for benefit fraud. I was in receipt of Jobseekers Allowance at the time but had a 2 month travelling trip organised which would have obviously taken me out of the UK. Unlike Joseph, I had not received any emails or been told anything of this kind by anyone-I just wildly assumed that, as my holiday was booked, they would imprison me for claiming benefits at a time I wasn’t entitled to. This sounds foolish looking back at it now but, at the time, despite several people telling me that nothing of the sort would happen and that the claim would simply be cancelled if I didn’t turn up twice in a row, I was utterly convinced that I would end up in prison to the point where I attended my local gym once and couldn’t stop thinking about whether there would be any gym facilities in whatever prison I was going to end up in! I was anxious enough without any encouragement-if I had received a letter or email telling me the police would be investigating my circumstances, I don’t know what I would have done so I understand how distressing it must have been for Joseph. Eventually I got a job to start just after returning from travelling so I cancelled the claim before I left the UK and it all worked out fine which was a huge relief! This sort of intense, illogical anxiety is very difficult for people who aren’t on the spectrum to understand particularly as, in a lot of cases, this anxiety doesn’t respond to reassurance, no matter who it is from or how it is phrased. I can look back now at forum posts I wrote at that time and see how illogical the anxiety is and how frenzied my writing was because of how frenzied my thoughts were but, at the time, my mind had convinced me I was going to go to prison, just as Joseph’s mind had convinced him he was going to be arrested.

The most tragic thing about this case is that Joseph took his own life whilst the people that orchestrated the scam in order to get some easy money are unaware that he committed suicide and have most likely targeted lots more people since that fateful day. I hope that Joseph rests in peace and my thoughts are with his family. I leave you all with one reminder-although our anxiety may appear illogical to you and indeed is often illogical, please understand that, for us, at that time, it is taking over our every thought process and that is the scariest thing we have ever experienced. Yes it will fade eventually but, while we are in the throes of our anxious thought spirals, we can’t see that so we need someone to guide us through that without judgement. Joseph’s tragic story illustrates just how all encompassing such anxiety can be in autism.

Touch Sensitivity and the Autistic Spectrum

As I have mentioned before, sensory sensitivities and processing problems are common in autism. This basically means that either a combination of the 5 senses or all 5 senses are processed differently leading people with autism to either avoid or seek certain sensations, noises, textures, tastes and smells. The sense that is sensitive in me is that of touch.

Like a fair number of people on the autistic spectrum, I am very sensitive to light touch. It gives me the same sensation as an insect crawling on me. I prefer deep, firm touch as this is much easier for me to process and deal with. I have always had spots on my body which are very ticklish. The one which I was best known for when I was a child was a spot on my left hip which, at one time, was so ticklish that even someone sitting next to me on that side would set me off laughing and squirming. As I have matured, this area has become a lot less ticklish for some reason. My main ticklish areas now are the soles of my feet (like 99% of people, autistic or not!) and, more unusually, the backs of my legs. The latter one I only discovered last year when having a full body massage (I can tolerate massage because it uses firm touch which my brain finds easier to process) and I couldn’t stop kicking and laughing when the therapist started massaging the backs of my legs. She told me I was the first person she had ever known to be ticklish in that area!

Touch is very complex in my life. I don’t mind being touched by people I like and trust but I absolutely hate being touched by strangers or by people who I don’t get on particularly well with. My friends at university were shocked when I went to the Summer Ball there in my final year and was getting so wound up and angry with the amount of people who were bumping into me! Like a lot of people on the spectrum, I avoid crowds wherever possible. I travel on the London Underground occasionally and always feel like I have taken 10 years off my life by the time I’ve finished because of how stressful I find it! What really winds me up about touch is the fact that so many people don’t even consider that maybe not everyone likes to be touched by someone they’ve only just met and will insist on touching someone on the arm or shoulder within minutes of meeting them. I understand that some people are tactile and like to express themselves through touch but that touch can make the recipient feel deeply uncomfortable sometimes.

The other area that touch really affects but is not that well known about is textures. There are certain foods which I will never desire to eat because the texture feels wrong in my mouth. I know autistic people who avoid fizzy drinks because the sensation of the fizz in their mouths feels wrong to them. The texture of sand on wet skin feels horrible to me and, when I am abroad on a beach holiday, I will try and do anything to avoid having to walk on the sand with wet feet. Similarly, I cannot tolerate wearing clothes made from certain textures. I have only just, in the past year or so, been able to tolerate wearing woolen jumpers with another top underneath them-I still can’t tolerate wool against my bare skin because the itching is all I can focus on. I also have a real fear of static shocks-I hate the feeling of them and, if I fear coming into contact with something that will give me one, I will pull my sleeves up over my hands before I touch the item I fear. Pulling clothes made out of nylon out of a tumble drier and getting the static from that gives me a similar feeling. I have always wondered whether my low pain threshold is related to my touch sensitivity but I don’t think they are related because I know some autistic people who are just as sensitive to touch as I am, if not more so, but who have extremely high pain thresholds.

Over the years I have got a lot better with touch. I will give and reciprocate hugs now which I wasn’t able to do for years because the touch felt too smothering. I no longer get angry when people bump into me (except if I am really tired but I think everyone gets more moody when they are tired). I will, no doubt, continue to develop even more coping strategies than I already have in order to deal with touch (an example is touching myself firmly if I have just been touched lightly and it is making me feel uncomfortable). I am sure the same is true for many people with autism, no matter where they lie on the spectrum. However, I also think that people need to consider how touch feels to someone who is sensitive to it and begin to understand why they display certain reactions. Don’t attribute it to a lack of emotion-most of the time, it is purely neurological and a sign that our sensory processing system is struggling. Please understand this and respect that we are trying our best.

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!

The Functioning Label Debate

The functioning label debate is one that occurs pretty much daily in the online autism communities I belong to. It is a complex debate but I feel it is worth discussing on here in order to enlighten people as to just how complex the autistic spectrum is and how separating it into two distinct functioning labels is not helpful.

The majority of people, including health professionals, view autistic people as either “high functioning” (which includes those of us with a diagnosis of Aspergers) or “low functioning”. They see it as a helpful way to describe how we “function” in society. However, one of the biggest issues with these labels is that it shapes in a very narrow way how people view us. As one person in an online group for people on the spectrum wrote recently, “All it does is dismiss the weaknesses of those who are seen as high functioning and, with people who are seen as low functioning, it dismisses their strengths”. I thought this was a very succinct and accurate way of putting it. What a lot of people who aren’t on the spectrum and don’t have a lot of experience with people on the spectrum don’t understand is that actually a lot of instinctive behaviour in autism is very similar, whether someone is classified as high or low functioning. The difference is that those of us who are labelled as high functioning display learned behaviour which those who are classified as low functioning cannot always learn in the same way because they often have severe learning difficulties. Almost all of my behaviour is learned-the only time you will see my instinctive behaviour is when I am stressed or very tired. Most people on the spectrum who can get by socially do so because they are essentially “parroting” the behavour that they have learned people want to see. To me personally, there is no gaping chasm between myself and my students who are classified as “low functioning” in terms of the way we process things and the way we perceive our environment-the only difference is that I have years and years of learned behaviour and I don’t have learning difficulties whereas they primarily display instinctive behaviour and have severe learning difficulties.

I can imagine people thinking now, “But it’s about more than that! You can speak and type-that makes you high functioning”. Yes, in your terms, it does. I am thankful every day for my verbal ability-it allows me to explain myself and to explain how I perceive the world to other people. However, just because someone with autism may not communicate with speech, it does not mean they have nothing to say. There are lots of autistic people out there who type extremely articulately and eloquently but who are classifed as “non verbal”. Speech is not the only method of communication. Yes it is the easiest for most people to understand but there are so many other ways of communicating-sometimes you just need to look for them. I would also like to point out one thing-just because someone with autism has the ability to speak, it does not mean they can be understood. People continually misunderstand what I say when I am speaking to them verbally-it’s like there’s a block between the thought in my mind and what comes out of my mouth. I can speak but I can’t always communicate in the way that people expect me to be able to. Also, like a lot of people on the spectrum (and probably quite a few people not on the spectrum), I lose the ability to speak during times of extreme stress or emotional turmoil. When this does happen, those of us who are described as “high functioning” get no understanding for this temporary loss of verbal ability. Most people seem to be of the opinion that, as we can usually speak, we are choosing to be awkward and should just get over it and speak.

This brings me nicely onto the other problem with functioning labels. As mentioned before, being labelled as “high functioning” leads people to dismiss your weaknesses and being labelled as “low functioning” leads people to dismiss your strengths. I have come across so many people online and in real life who have been told that, as they are intelligent, they should find a way to “grow out” of their autism. This to me highlights a real ignorance as to what autism is. It is not an intellectual disability although a lot of people with autism can have learning difficulties too-it is a difference in our neurological wiring. It comes back to instinctive behaviour again-I can learn so many coping strategies in order to live my day to day life but I cannot change my instinct. Similarly, those people with autism who are labelled “low functioning” are so often simply seen as a list of negative symptoms and weaknesses when they have so many strengths. When eloquently written books and blog posts are authored by such individuals, people are amazed. They assume that, because someone presents with severe autism, they are incapable of communicating or of sensing the world around them when, in fact, it has been proven that most people with autism are highly observant people who notice everything and particularly pick up on people’s attitudes towards them. All of us are so much more than a functioning label and these labels can really damage us. When people who are seen as “high functioning” fail to get or keep a job because of their communication difficulties or fail to pay their rent on time because they have executive functioning issues, we are offered no understanding. If we try and explain where it went wrong, people accuse us of using autism as an excuse. Their belief is that, because most of the time we can function in society, we should be able to function at exactly the same level as they do. Unfortunately, the autistic spectrum is a lot more complex than that. Someone can be “high functioning” in one environment with the right level of understanding where they are at their most comfortable and that same individual can be “low functioning” later that same day in an environment that is not suited to their comfort, such as a busy supermarket or crowded train station. People with Aspergers are just as prone to meltdowns as people who are diagnosed with severe autism. The only difference is that we are often simply viewed as being awkward when we can’t cope with circumstances any more because people fail to grasp the difference between learned behaviour and our instinctive coping mechanisms.

Please remember that the person with Aspergers who you know is often simply acting in order to be socially acceptable. We do this because we know that that’s what society expects but, over time, it takes its toll and is exhausting because it doesn’t come naturally to us. Please let us have our coping mechanisms at the end of a long day trying our best to fit in. We are all more than functioning labels. They may be useful to certain sections of society in order to target services but, when it comes down to it, we are not labels-we are humans and, like all humans, we differ on a day to day basis. What we come across like in one situation is likely to be completely different to how we come across in another situation, like everyone. Please don’t assume that those of us with Aspergers don;t have our own issues and struggles. We may not have learning difficulties but our ability to function in academic terms has no bearing on how much stimuli we can tolerate in everyday life. Conversely, please don’t assume that someone with severe autism has nothing to offer. Respect their methods of communication and you will get a lot back. You need to try and view autism through our world, not yours. I know it’s very difficult which is why I set up this blog in the first place. I hope that people can see just how complex the spectrum is and not to take someone’s functioning label as a be all and end all. If you google “I am Joe’s Functioning Label”, it will take you to a fantastically written blog post detailing just how damaging these labels can be. I hope this post has made people think about how complex a topic this is-please see us as us, not as functioning labels.