My thoughts on people claiming children can grow out of autism

One opinion I have come across rather a lot lately in autism groups online is that children can grow out of their autism once they become teenagers or young adults. This opinion is mainly held by parents who claim that their children have grown out of their autism. The most famous recent example of this was Toni Braxton claiming that her 13 year old son Diezel no longer displays symptoms of autism (my IPad is funny about hyperlinks but Google Toni Braxton autistic son and you’ll get several articles about it come up). However, I have also come across a couple of adults online who claim to have grown out of their autism and say that, if they were to go through the diagnostic process today, they would not get a diagnosis of any autistic spectrum condition.

Let me clear something up before we go any further-autism can not be grown out of. It is a neurological condition which means our brains are hard wired in a certain way that gives rise to the symptoms of autism. Every individual is different but, while outward manifestations of the conditions on the autism spectrum will differ from person to person, the neurological make up is similar. I do maintain that people who do not have the associated severe learning disabilities that can be co morbid with autism can learn social skills the same way that someone without autism can learn regular skills. This is how I learned the social skills I have-through years of hard work and many mistakes. This does not mean that I have grown out of my Aspergers though. It doesn’t take much for me to forget these social skills-if I am tired, stressed, anxious or not feeling well, my brain cannot access these as they are not natural to me and so people who haven’t seen that side of me before where I am unable to communicate verbally or blurt something out impulsively find it hard to match that person with the person they normally know me as. I am constantly working at 100% to be socially acceptable and the irony with that is that, when you work so hard to fit in with the world, people can be very unforgiving when you do have a bad day and suddenly, as the quote goes, “my autism starts showing”. It worries me that these children who have apparently grown out of their autism are putting themselves under immense pressure to fit in socially and, as such, are not given enough recognition that they do still struggle and, from experience, this can lead to a vicious cycle of low self esteem and self loathing because it feels like they can never truly be themselves. I feel a lot happier when I have an outlet for my stress, such as stimming. After a long day at work, I usually stim for at least 30 minutes uninterrupted and, after that, I feel calm enough to attempt to sleep. I know some autistic people who have been shamed out of stimming, either by relatives or by professionals such as teachers, and feel like they have no outlet for the stress that comes from having to constantly monitor your behaviour in order to fit in as best as you can with society.

I also maintain that people usually grow into their autism rather than grow out of it. Autism is a lifelong condition and, like any lifelong condition, over the years, you learn to live with it and you learn coping strategies. Many people with autism who are sensitive to noise, for example, really struggle as young children and can have very public meltdowns due to over stimulation but, by the time they become adults, they have learned which steps to take to avoid over stimulation such as headphones or ear defenders or ordering shopping online rather than going to busy supermarkets. People who have severe learning disbilities alongside their autism also learn, over time, how to regulate the auditory input they receive from the environment. A lot of autistic people make their own unique vocalisations which often serve to block out other auditory input by making that noise the loudest input they are receiving. We need to respect other people’s coping strategies. As long as it is doing us no harm, why force them to stop, creating more anxiety and distress? If someone flaps their hands to calm themselves down after holding it together all day, respect that and don’t try to stop them from doing it. I have never seen personally why hand flapping is considered so socially unacceptable by some. I can think of so many things that I would consider socially unacceptable but wider society deems perfectly fine but they can’t tolerate seeing someone flapping their hands. It’s one thing I really don’t get.

People with autism also benefit from extensive support (where available). This support can enable them to fulfil their potential but it doesn’t mean they are no longer autistic. I benefited hugely from the social skills sessions I attended in secondary school but I am still autistic. Yes, as a child, in home videos, I came across as very noticeably autistic (lots of hand clapping and running around in circles) and now, as an adult, I just come across as shy and socially awkward to most people (unless they work in the autism field) until you get to know me a bit better but that’s down to years of hard work. Another thing I find ironic is that, with the recent Government cuts, a lot of autistic children in both mainstream and special schools are having their support reduced precisely because they have benefited so much from that same support. It just doesn’t make sense to me.

I find it interesting that most people believe that the people who have grown out of their autism are the extroverts. Toni Braxton claims that her son is now a “social butterfly”. Whilst there are a lot of people with autism who do present as socially awkward, conversely some of the most charming and sociable people I know are autistic. The media has done a lot of damage by portraying autism as introversion. Yes, a lot of people on the spectrum are introverts but there are lots of extroverts on the spectrum too and also a lot of introverts who are not autistic. It is not impossible for people with autism to make friends or to keep them. It is stereotypes like this that can do so much damage to our community. I have read accounts from women who have gone for a diagnostic assessment only to be told that they cannot be autistic because they made eye contact with the psychiatrist who was assessing them or because they are married. One man was told that he cannot be autistic because he works full time as a highly paid professional. Prejudice is still very much in existence when it comes to autism. There are still far too many professionals who believe that autism is a childhood condition and that, if you weren’t diagnosed before your 18th birthday, you’re obviously not autistic. People whose autism is not picked up until adulthood often have mental health issues such as depression from working so hard to fit in and never feeling like they can truly be themselves.

Lastly, misdiagnosis can and does happen although it is nowhere near as common as some people would have you believe (mainly the people who believe autism is just an excuse for poor parenting but that’s a whole other topic!) I once came across someone on an autism forum that had never experienced a meltdown or shutdown, never had obsessions, was very adept at reading body language and social cues, had no sensory issues, did not have any urges to stim and strongly felt that they had been misdiagnosed which we all agreed with but I think he was a very rare case. If anyone truly feels they have a diagnosis of an autism spectrum condition but do not have any of the symptoms any more, I would suggest speaking to your Doctor or the person who diagnosed you as you were most likely misdiagnosed. Although I have changed a lot since my initial diagnosis, I know that I would still receive the same diagnosis today if I went for a reassessment because my brain hasn’t changed since my last assessment. Well actually I would now be given a diagnosis of Autistic Spectrum Disorder Level 1 given that Aspergers has now been absorbed into the spectrum as a whole which, in my opinion, was the best thing that could have happened but that’s for another day!

So Toni Braxton’s son, unless misdiagnosed in the first place, is still autistic. Given that I don’t think she ever accepted her son’s condition in the first place (she was quoted as saying that his autism was a punishment from God for a previous abortion-it’s pretty distressing to know that some people still consider autism or other disabilities as punishments), I think her eagerness to assert that his autism has now vanished is related to that. More than likely, Diezel, like most teenagers on the spectrum, has devised his own coping strategies and grown into his autism. I am sure he will grow into a fine young man who hopefully accepts his condition and works with it to achieve his full potential.

 

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.

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

http://www.mirror.co.uk/news/uk-news/autistic-schoolboy-hanged-himself-after-5025351

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.

Autism and Stomach Issues.

This topic is one that I find is discussed in the autism community online a lot. It is an area I am fascinated in and I have read a lot of articles about it. I also have stomach issues myself-in the last seven years, I don’t think there’s been a week where I’m free of stomach pain and nausea for seven consecutive days. I have been diagnosed with Irritable Bowel Syndrome but medication does not do much for me in this regard. I am a lot better than I used to be. I used to be kept awake for nights on end with intense bouts of nausea but now it may only be one night in every fourteen that I actually can’t settle at all because of it. I will come back to this point later when I discuss reasons for these issues.

From my own personal experience and from the experiences of other people on all levels of the autistic spectrum who I know personally, I would estimate that the majority of people on the autistic spectrum suffer with a variety of gastrointestinal issues. Constipation and diarrhoea are the main ones along with reflux, indigestion, stomach cramps, bloating, nausea and vomiting. Some suffer with gastroparesis, a condition which affects the rate at which your stomach digests food, meaning that meals remain undigested for sometimes as long as 24 hours afterwards and inevitably get vomited back up again (although, like any of these symptoms and disorders, it affects people without autism too). I don’t think anyone with close knowledge of autism can deny that stomach issues are a huge part of it but what a lot of people fail to agree on is why these issues occur.

I believe there are several reasons why stomach issues are common in people with autism at all levels on the spectrum. Firstly, it is well known that people with autism can often have limited diets which are often low in fibre and this can often lead to constipation in particular. Some medications for co morbid conditions such as epilepsy can also cause constipation as a side effect. Some autistic people also eat extremely quickly and have a tendency to swallow without first chewing which is not good for the stomach. Another reason is gluten intolerance. A lot of children with autism in particular follow gluten free diets due to gluten intolerance. Gluten intolerance is not specific to autism, of course. There are a lot of people out there who suffer stomach issues when they eat foods which contain gluten and have to follow a gluten free diet-my brother is one of them. Some autistic children are on diets that cut out certain foods because their parents or caregivers have noticed that cutting out these foods helps with decreasing behavioural issues. This may well be related to stomach issues-if you are a person with autism who cannot communicate with words, how are you going to communicate to those around you that you are experiencing intense stomach cramps and feel uncomfortably bloated? As someone who works with children with disabilities who cannot communicate verbally, I know that pain is often expressed through behaviour such as hitting or scratching.

One medical theory which often makes it’s way around autism sites online is that autism is actually a gut based disorder rather than a neurologically based one. If you Google “autism and stomach issues”, some of these articles are bound to appear on the first page of search results. This theory I don’t believe on a personal level but I know there are a lot of people out there who do believe it. I think that the biggest reason for stomach issues in people with autism is anxiety. In fact, I can’t believe how many people have never come forward with this idea in the many discussions I have read about this online.

It is a fact that the majority of people on the autistic spectrum suffer with anxiety. For those people with autism who don’t communicate verbally, it is often expressed in forms of challenging behaviour when the person has to finish an activity or transition to a new environment. It’s not just a dislike of change-it’s a fear of change. For those of us who are lucky enough to be able to communicate verbally, we can sometimes verbally identify to people that we are anxious although some of us have difficulty in labelling emotions and may not be able to pinpoint anxiety as our current emotional state but can feel in our stomachs that something is bothering us. It is also a non disputed fact that anxiety is often expressed physically in the stomach and bowels. Nausea is common in people who are feeling nervous-indeed, some people who experience panic attacks vomit during or immediately after them. A lot of people, autistic or not, have a physical reaction to stress that includes vomiting and diarrhea. This seems to be accepted widely as a reason for stomach issues in the general population but, for some reason, it’s neglected a lot as a reason for stomach issues in autism. Perhaps it is because of the narrow way in which society as a whole views stress and anxiety. If you consider the outward manifestation of anxiety to be something physically obvious such as a panic attack involving hyperventilation (which not all of them do), it’s probably not crossed your mind that the person with autism who is hitting themselves and banging their head against a door or wall is doing so because they are extremely anxious. It simply doesn’t cross most people’s minds to equate challenging behaviour with anxiety unless they are closely involved with someone with autism who expresses their anxiety in such ways. Most people with autism live with high levels of anxiety on a daily basis-the next logical step is that any bowel issues may be associated with this.

Perhaps what is needed the most to help stomach issues in people with autism are measures to decrease anxiety levels first and foremost. Yes, food intolerance of various types may also be behind their stomach problems and special diets will also help in these cases but I genuinely believe that a large number of digestive problems in people with autism are anxiety related. A little understanding can work wonders-please remember that.

Travelling abroad when you have Aspergers Syndrome

I would consider myself a fairly seasoned traveller. I used to go on family holidays abroad regularly as a child and try to go abroad at least once a year. I have a fascination with learning about other cultures and experiencing these first hand and holidays help me to experience this. 

When I left university in 2008, I went travelling with a close friend of mine from university. We travelled around Thailand, Hong Kong, Australia and New Zealand. I loved every minute of it and my only regret is that unfortunately, due to finances and the fact that I had a new job to come back to in the January, we only spent 2 months abroad. I could have easily done with six months travelling time. Last February. I experienced flying on my own to Trinidad for the first time to meet friends out there.

I know that, for most people, travelling abroad poses no problems but, for me and doubtless also for other people with Aspergers, it is a concept that fills us with anxiety. One example is my paranoia around security controls at airports. I know on an intellectual level that there is nothing criminal or illegal in my suitcase or hand luggage and that nobody else could have gained entry to it (I always padlock my suitcase) but that doesn’t stop me wondering whether something will have magically found its way into there and get me into serious trouble. I am always relieved when my bags are given the all clear even though I know that they will be. When something on my person sets off the metal detectors and I get bodily searched by security staff, I absolutely hate it. I don’t like being touched by strangers especially at such close range but, of course, there is no justification to my knowledge of refusing to be searched without sparking off suspicion. Immigration officials unnerve me too even though, again, I have no reason to believe that I will run into any trouble with them. I am always relieved when I am finally sat on the plane and all of the nasty experiences are behind me.

Last October, I experienced a horrendous time when my boyfriend and I flew to Prague. Despite assurances from Czech Embassy officials that he did not require a visa, when we got to Prague Airport. my boyfriend was refused entry due to not having a visa and we had to fly back again, My anxiety was at ridiculously high levels that day but we got through it and we eventually got our weekend break in Prague this February. It is a day in my life that I will never forget though! I was surprised that we survived the ordeal without me being reduced to a nervous breakdown!

When it comes to the holiday destinations themselves, I am not spontaneous at all. I am not the sort of person who can turn up in a country and ask for the nearest cheap hotel (as a lot of people I met on the travelling circuit did)-I need to know before I travel exactly where I am going to be staying, how far it is from the airport and I need to know that it is already paid for. If possible, I book excursions before I go away too so I know my itinerary. I envy people who can just fly somewhere and pick a hotel when they get there but, for me, it’s impossible as I would spend the whole flight to the destination panicking that I wouldn;t be able to find anywhere that suited my needs and desires.

Once flights and accommodation have been sorted, I would actually say I am quite relaxed when I am on holiday. I have issues with heat and sunlight which can often make me feel quite ill but, if I avoid the times of the day when the sun is at its hottest and always try and find some shade, I am OK. I love sitting on Mediterranean marinas looking out to sea while having my dinner or a drink. I love meeting the local people too.

I would recommend travelling to anyone with Aspergers but make sure you have a precise planned itinerary first to make sure that you keep your anxiety level as low as possible. Make sure you always have enough money and means to contact people in an emergency and then try and relax and enjoy your holiday. I never thought I would be able to fly Trans Atlantic on my own but I did it! We need to push ourselves at times to see just how much we can achieve.

As for me, I’m now thinking of where to go next!

 

“Doesn’t everyone do that?”

First of all, I hope everyone had a great Christmas and I wish you all a Happy New Year as my next blog post will be in 2014!

My blog post this week was inspired by a post on another autism blog which is fantastically written and hugely touching (see here-http://autisticchick.blogspot.co.uk/2013/12/smaller.html). Reading this blog post was like reading the story of my life. I empathise completely with the frustrations this girl feels and I often feel the same as she does when people dismiss Aspergers as insignificant. Reading the post made me realise that the time was right for me to write about this issue on my own blog. I had been debating writing about it for a while but this finally inspired me on.

I know that this post is one of my more controversial ones but I feel that it is an issue that needs exploring. I will start by saying that I understand the reason behind why many people explain away traits of Aspergers Syndrome as something that everyone experiences-it is the way that a lot of people attempt to understand the complexities of the Aspergers mind. People have a tendency to rationalise everything that they come across in terms of their own experiences-they meet someone with Aspergers who explains about their social difficulties and make the comparison to a time when they felt shy and awkward at a social occasion-to them, that is similar but, to someone with Aspergers,it’s an insulting comparison. Just because I understand where the phrase “Doesn’t everyone do that?” comes from, it doesn’t mean that I don’t find it hugely frustrating. As Autistic Chick mentioned in her blog, the key is in the words “frequency” and “severity”. To return to the social difficulties scenario, there is a huge difference between feeling shy and ill at ease for a brief period of time at a social occasion (which happens a lot to everybody but the most socially extroverted people) and feeling so anxious around other people that you feel physically sick, have anxiety attacks and count down the time until you can retreat into your own safe environment once more. This, of course, is not to say that everybody with Aspergers has such a sense of dread at social occasions (indeed, I always try and attend social gatherings so that I have shared experiences to reminisce about with friends but I still struggle in environments where I don’t know people and tend to stick to the people I do know at such occasions) or indeed that everybody who isn’t on the spectrum does not experience anxiety at such occasions but it serves as a good highlighting point for how extreme our difficulties can be, It is hugely frustrating when I explain to people about Aspergers only to be met with platitudes such as, “Oh, but everyone does that!”. It is an insult to everyone on the autistic spectrum to be told that our difficulties are not worthy enough of a diagnosis.

Aspergers is a difficult condition to live with and classic autism even more so. Everyday life can be very confusing and frustrating and I often feel like challenging those people who believe that autistic traits are shared by everybody and so aren’t worthy of any understanding or special consideration to live inside my head for 24 hours. I believe that they would understand at the end of that 24 hour period just how extreme my symptoms can be and how hard I have to work to appear “normal” so that I maintain a successful career and relationships. They would understand that there is a difference between being slightly apprehensive and nervous about doing something they find difficult and the sort of anxiety I experience where I cannot focus on anything else, become increasingly emotional and tearful and end up picking compulsively at the skin on my hands with both my fingers and, on occasion, my teeth as well. They would understand that there is a difference between being a little socially awkward and not being able to read the body language of someone stood right in front of you and therefore missing social cue after social cue. They would understand why my emotions fluctuate so much and why I need solitude on a daily basis, even if the only time I can achieve such a state is at night once I return from work and can have 30 minutes of uninterrupted reflection time before bed. Most of all, they would be able to see just how much I think over things and analyse them all the time. My mind is constantly thinking and analysing and I find it hugely difficult to completely relax. I understand the importance of socialisation and I am blessed to have very special friends who understand the way in which I interact but I also understand the need that a lot of us with Aspergers have for “alone time”. It is this part of society that frustrates so many people with Aspergers-why are people so concerned about the way we socialise? We would be fine if we were allowed to interact in our own way instead of being urged all the time to “be more social”. Society seems to favour the extroverted and those who are more introverted in nature, whether they have Aspergers or not, are often made to feel like they need to improve the way they interact with other people when, in fact, the world needs all kinds of people to function. 

I believe one of the positives about having had people claim that Aspergers traits affect everyone so many times over the years since Aspergers has been publicised in the United Kingdom is that I know how it feels and therefore would never say anything like that to people with other conditions such as Obsessive Compulsive Disorder (another condition that seems to attract the good old phrase, “Oh, I do that too!”). I know that my Aspergers has given me the traits of rigidity and obsession alongside a love of and indeed craving for routine but I also know that my experience with these traits in no way relates to someone with OCD and I know that to suggest such a thing would be insulting and dismissive of the problems that it causes them on a daily basis, the same as it is for those of us on the spectrum when people claim that our symptoms are nothing to worry about and that they are not worthy of a diagnosis.

My final statement is this-please, please consider how it might make someone with Aspergers or OCD or depression or anxiety feel to hear that their symptoms are experienced by everyone. I know that people may think that it is comforting for us to hear that our traits are shared by a lot of people in wider society but it feels incredibly dismissive and it also feels like we are being accused of over dramatising our symptoms when that is the last thing that we would think of doing. I don’t want my mind to be a tumultuous roller coaster of emotions and neuroses but that is (metaphorically) the card that life has dealt me so I have to deal with it as best I can. We need understanding, not dismissal and we need compassion, not rejection. 

The internal battle between anxiety and self loathing

This post was prompted by something which took place earlier this week which made me reflect afterwards on how it made me feel and the complex internal battle that was taking place at this time. Before I start this post, I want to make it clear that I am fully aware that both anxiety and self loathing are not solely the preserve of those on the autistic spectrum but, to me, it is an important topic and one I wish to educate people about.

As mentioned briefly on this blog before, I have struggled with anxiety for many years. One of my key sources of anxiety is asking questions of authority figures that may cause them to think badly of me . I know that, in general, people are brought up to respect people in positions of authority but, in my case, it goes beyond that into a pervasive fear of these figures in certain situations. When I have to ask them something for which I cannot predict their answer, I get reduced to a state of extreme nervousness. I start trembling, lose my ability to speak clearly (and often lose my ability to speak at all) and lose my ability to even look in their direction. Whilst all this is happening to me, another part of me understands that getting into such an anxious state is completely irrational and it is this part of me that then deteriorates into self loathing. At the same time that my stomach is tightening and I am experiencing all these other physical symptoms of intense anxiety, the other part of my mind is continually ranting about how I am stupid to be getting so anxious and that my inability to control my anxiety at that time is pathetic. It is this part of me that makes me distressed as I can be so harsh with myself.

Earlier this week, I was in a position where I had to ask an authority figure at work a question which, to me, was a difficult subject to broach. I needed to know the answer to this question by a certain date as it involved visa requirements for a holiday (long story and one that I won’t go into here). As I went into work that day, I already had the warning signs of anxiety because I knew that I had to ask this question. I kept attempting to pluck up the courage to ask it and, every time, my courage would fail me. My hands started shaking and the part of my mind that wasn’t consumed with anxiety began taunting me with thoughts such as, “You’re letting everyone down!”, “You’re letting your boyfriend down! He’s relying on you for this!” and, “Just stop being so pathetic and ask the question! Man up!” These thoughts made me distressed which, in turn, made my anxiety spiral even further. My mind was consumed by these thoughts and, although I managed to still complete the work related tasks that needed to be done, the continued negative thoughts at the back of my mind made me feel like I was worthless. The person I needed to speak to then left for a work related meeting. I was  furious with myself that I hadn’t yet plucked up the courage to ask him such a simple question that should take two minutes to ask. I then emailed him, letting him know that I needed to discuss something with him. This is something I should have done a lot earlier. I find typing a lot easier than speaking, particularly in situations where I am feeling anxious or nervous. I eventually did ask the question but it was extremely hard for me to do so. I can’t bear the thought of someone that I respect thinking badly of me and the anticipation that they may think badly of me makes me fearful of asking them anything that may make them think this way.

I had a similar experience with a member of security staff at the accommodation where I live a few weeks ago. I was locked out of my flat and needed to get back in but I was utterly convinced that this security official would berate me for being stupid and leaving my keys in my bedroom. I keyed the number into my phone and sat there staring at it for 20 minutes, willing myself to call it but terrified that the consequences would be severe. Of course, in the end, it turned out well, as these things have a tendency to do. I always feel embarrassed and humiliated afterwards when I reflect on what happened and think about how I must have come across to others at the time. I know, in my mind, that it is not “normal” for a 27 year old woman to be so scared of asking a simple question or making a simple request that she loses her ability to speak but I can’t work out how to prevent the anxiety from spiralling when my normal coping strategies don’t work.

Living with the internal battle between anxiety and self loathing is exhausting. It is bad enough going through it at the time that you are anxious but then your mind helpfully decides to play over the event afterwards and then you feel horribly embarrassed even when the rational part of you knows that everyone else involved has long since forgotten about how you appeared, if not forgotten about the event itself.

I urge you-if you know someone who becomes anxious easily, please don’t use the phrase, “There’s nothing to worry about! Just chill out!” or variants of that phase. People living with anxiety know that, in most cases, it is irrational and out of proportion to any actual threat. Often part of their mind will be telling them furiously that they are pathetic for getting so stressed out over something which, in the grand scheme of things, is tiny. They have enough self criticism to last them a lifetime-they don’t need criticism from anyone else, even when it is well meaning and said with good intentions.