The Disclosure Dilemma

I have read several posts on Facebook recently concerning disclosure of Aspergers Syndrome to others. It is a topic I have always found fascinating so I thought I would also discuss this on my blog.

Personally, I have noticed among the Aspergers community two opposing but equally as prevalent attitudes regarding disclosure. Some people will choose never to disclose their condition, even to their own relatives sometimes, whilst others, usually people who have received their diagnosis in adulthood, like to disclose their Aspergers to everyone. I fall in the middle of these two extremes. I don’t make a point of telling everyone I meet that I have Aspergers but all of my friends and most of my work colleagues know I have Aspergers and I do make reference to it on my Facebook page so I don’t make a point of hiding it either. I did go through a phase when I was at university of making it the first thing I spoke about whenever I met someone new. I think this was because it was the first time in my life that I was responsible for deciding when to disclose and I thought everyone should know about it. This lasted for around a year and then I calmed down and took on my current stance of accepting my Aspergers but not making it my main talking point with everyone I met.

I can understand both sides of the disclosure argument. I can understand people who want to tell everyone about Aspergers. As I have mentioned previously, I have noticed these people tend to have been diagnosed in adulthood, sometimes as late as their sixties. Many of them have lived lives of isolation and withdrawal, constantly being rejected by society but not knowing why. Most of them have been misdiagnosed with various mental health conditions such as schizophrenia, bipolar disorder, borderline personality disorder and various personality disorders. For them, finding out they actually have Aspergers Syndrome is a massive relief. They are fascinated in finding out as much as they can about Aspergers and, for lots of newly diagnosed people, it becomes an obsession. They are so relieved that finally their symptoms have a name that they become fixated with Aspergers and want everyone they come into contact with to know all about their Aspergers too. This forms part of their process of accepting the diagnosis. They may be furious that their condition has remained undiagnosed or misdiagnosed for so long. They need to express their relief at finding out the truth before they can settle. There are also people who are extremely proud of their Aspergers and like to disclose it to encourage other people on the spectrum that there is no shame in being autistic. We are people like everyone else and we should not have to hide so much of our personalities. I understand this viewpoint and agree with it, to an extent.

However, I can also understand why some people refuse to disclose their Aspergers. Unfortunately there is still a lot of prejudice surrounding Aspergers and autism in general. I have heard so many stories of discrimination, particularly when applying for jobs. Given that discrimination on the grounds of Aspergers is so hard to prove, I could not find any cases where an employer had been found guilty of refusing to employ someone with Aspergers Syndrome or other forms of autism solely because of their condition but we all know it happens (and this is not including the social expectations of the interviewers which mean that, a lot of the time, people with Aspergers come across as strange in interviews and won’t get the job even when there is no discrimination on the part of the interviewer). One of the most common questions on the main Facebook Aspergers page I post on is “Should I mention my Aspergers on my application form/after I have been offered an interview?” The overwhelming majority of replies advise not to disclose Aspergers until you are in post and find that it is causing you issues in some way. A few people have even been advised by recruitment agencies not to mention Aspergers on an application form. I personally do disclose my Aspergers on job application forms and have got 2 jobs with that on my application form so I don’t think it’s always a bad idea. In my mind, it comes down to honesty. I would not want to work for a company or individual that would not take me on just because they misunderstand Aspergers and, also, only disclosing when you run into trouble because of it runs the risk of you not being believed and people thinking you are making it up to avoid a disciplinary or being sacked. I think it is far better to be honest from the start. I know that it is extremely frustrating when people look at the word “Aspergers” and make all sorts of judgements based on how the media portray us but, eventually, you will find an employer who will either not be bothered by your Aspergers or, even better, see it as an asset, such as in the case of certain IT companies or universities.

Outside of the world of work, there are also attitudes that people experience that make them wary of disclosing their Aspergers. As I have mentioned on this blog before, I know of one young man in America who was banned from attending a dance club he loved following the Adam Lanza case because he has Aspergers and his dance teacher thought he may display violent behaviour, even though he had never displayed this sort of behaviour before. Another article I have linked to previously on this blog was about people protesting about having a six bed residential house for adults with autism and learning disabilities in their estate. A lot of peoples attitude towards autism seems to be, “I don’t mind autistic people unless they’re down my road/in my children’s class/living next door to me”. Discrimination against people on all levels of the autistic spectrum is a daily occurrence. However, to me, this illustrates so clearly the need for more people to be open and honest about their Aspergers. The more people see that it’s nothing to be scared of, the more accepting they will be. Ignorance is born from fear. If we take the fear away through education, we are helping not just ourselves but everyone else on the spectrum. I know that it may take an incredibly long time for the message to get through to people that we have feelings, emotions, needs and desires like everybody else, no matter where we are placed on the spectrum, but once it does get through, our lives will improve so much.

Of course there are people out there who have no interest in becoming more tolerant towards and accepting of people with autistic spectrum conditions. That’s unfortunately a part of life. I find that Aspergers is our radar for these people. The people that can see past the Aspergers are truly worth knowing and making friends with. The people that can’t see past it and have no interest in seeing past it aren’t the sort of people that are worth our time. To end today’s post, I will point out that, obviously, it is everyone’s individual decision as to whether to disclose their/their child’s condition but, before you make that decision, please think about the advantages that educating people can bring to the world. The world needs more compassion and more understanding-I try to contribute to that in any way possible and I truly believe one day, widespread discrimination against people with autism will be a thing of the past. I hope to be alive to see that day.

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The Relationship Between Autistic Spectrum Conditions and Music

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

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

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

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

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

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

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

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

 

 

Aspergers and “Black and White” thinking.

This topic was suggested to me by a friend of mine who also has Aspergers. I have touched on the tendency of people on the autistic spectrum to think in terms of absolutes-what other people call “black and white thinking”, but this is the first time I have dedicated a whole blog post to it.

Personally, I have always thought in absolute terms and this has an impact on my whole life. Things are either right or wrong-there is no middle area for me. There is a very fixed and rigid way in which I think. I am frequently accused of being pedantic, particularly in terms of language. I sometimes find myself unable to resist correcting someone in their speech if I know that they have not said something in the correct way. I have cut down on this particular habit a lot because I know that it annoys people and I don’t wish to intentionally annoy anyone but sometimes it just slips out. It also affects my morals (in a good way, I hasten to add!) I have very absolute ideas of correct versus incorrect behaviour and I still struggle to comprehend why other people behave in ways which can be so cruel and, in my view, morally incorrect.

This type of extreme thinking also affects my emotions. I am always liable to assume the worst in any given situation because, in my mind, if something is not the best outcome it can be, it is automatically the worst outcome. My mind doesn’t seem to recognise the so called “middle ground”. As a result, my life is an emotional roller coaster a lot of the time because, if something isn’t the best outcome it can be, I am dealing with my own emotional fall out about it for a long time afterwards. I believe this is also why a lot of people with Aspergers identify as perfectionists-that personality type seems to lend itself to “black and white” thinking. Of course, it is also a personality type that I believe lends itself to depression a lot of the time too and a lot of people with Aspergers also experience intense depressive episodes, whether they have diagnosed depression or not. The connection between “black and white” thinking and certain mental health conditions is an interesting one and I would like to see more research into it.

Of course the majority of the world does not think or work in absolutes. There is lots and lots of “middle ground”-something that is not allowed in one situation is then allowed in an ever so subtly different situation. This really confuses us and means we have to learn ever more complex social rules which can then change on a whim. To me, if something is illegal, it is illegal. I have never been on illegal music or video sharing websites, something which I think puts me in the minority of people my age. I have a love for rules and would never knowingly break these, which is probably one of the biggest reasons why I was considered a “teacher’s pet” during my school years.

I know that this type of rigid thinking can make us come across as very irritating-I have heard people with Aspergers referred to as “precocious” and “insufferable” due to the way that we think. I would ask anyone who is reading this who doesn’t think in the way that we do to imagine just how exhausting life is for us when we view everything in such extreme ways and struggle to see the “middle ground”. Please try and support us through the emotional roller coaster that this type of thinking can cause and please try and appreciate that this type of thinking does have it’s advantages too-we are often incredibly loyal and honest because of the way in which we view things.

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.