Autism and Vocabulary

One of the things I often read about whenever I find articles discussing autistic traits is the fact that many of us are known to use too many words, or sometimes not enough, when attempting to explain things.

This very much applies to me. When at school, I was much-praised for my ability to turn a phrase and was top of the class when it came to spelling and written English. Writing at the time was and still is a special interest. I did, however, sometimes use words inappropriately.

When I discovered words that I deemed to be impressive, usually from books or dictionaries, I would often casually drop them into my speech, failing to realise that the use of these words would confuse others due to their general lack of use in everyday spoken conversation.

Case in point: I might have said something like ‘That’s a gargantuan lorry’, instead of ‘that’s a huge lorry’, which would seem to others an odd choice of words. I’d also use words without thinking about context, leading to some moments of confusion for others.

Adults were usually impressed by my wide vocabulary, but even they were sometimes a little perplexed and occasionally gave me gentle pointers to make me aware of how I might be perceived by others, especially other children.

Having said all of this, there have been other times in life where I have been rendered completely incapable of speech, usually because of Anxiety. When in a situation requiring a spontaneous explanation, I can quickly find myself on the back foot.

This is because it takes time for me to formulate exactly what I want to say; putting thoughts into words is one thing, but putting words into direct speech, at least in a social setting, is not as instinctual to me as it is to most people.

I don’t understand non-verbal social cues, sometimes misplacing the true intent behind what somebody is saying. As a result, I may sometimes fail to pick up on signs that somebody is unhappy with me or perceive offence from people’s words where none was intended.

When in situations where quick explanations are needed, I struggle to get my point across in a few words or to explain things in a way that is satisfies others. I have a deep-rooted dislike for having to explain myself, harboured over years of (often) unnecessary criticism.

I also find because of the delay forming words & putting them into spoken language, I’m likely to be interrupted. I find interruption rude, but it’s a normal component of quick-fire talk for many & not necessarily dismissive or arrogant, just that person’s way of talking.

What also slows me down in these situations is the endless list of other factors that social interaction entails. Making eye contact is difficult for me at the best of times, but when nervous I may lose the ability to look at the other person altogether.

This leads to misunderstandings as the other person may believe my intentions false or take my lack of eye contact as a sign that I’m lying. When given time to think about what I’m saying and how, my ability with spoken and written language can astound, impress and enchant.

If you would like to learn more about autism and some of my own experiences living with it, you can subscribe to my YouTube channel by following the link below:

https://www.youtube.com/channel/UCotuCdv8AAuKTRRbnL3ki-A

The Challenge of Making Eye Contact: Autistic Social Studies

When I was younger, one of the first things that made me aware that my brain was operating with a slightly different programming system than the considered norm was my ability to maintain eye contact.

Of course, I did not immediately recognize it as being a common autistic trait until later discussions with my parents and interactions with other autistic people.

Making eye contact is one of the standard practices associated with good social etiquette. It is also, alas, one of the ways in which many people determine whether an individual is an honest, trustworthy person. This is where one of the first major problems arises. While not necessarily a hard and fast rule, it is well-known that a notable number of autistic individuals have an aversion to lying, either because they believe in always being truthful or because they are unable to tell lies convincingly; for many autistic people even telling ‘white lies’ presents a huge challenge. However, with eye contact being an immensely uncomfortable (in some cases even a painful) experience for many autistic people, it is very easy for others to perceive our lack of engaging in eye contact as an indication of dishonesty. In most cases, this is a fundamentally incorrect conclusion to reach.

Speaking from personal experience, the reason eye contact can be so difficult for me is often a result of the other social hurdles that the majority of neurotypical (non-autistic) people do not have to contend with, certainly not to the same degree. An example to prove a point: Let’s say that I have just started a new job and the employer has a task that they want me to carry out. Let’s assume that they are telling me what they want me to do in person. I’m relatively new to this work environment and am still learning how the company operates, as well as gradually getting to know all of the other employees. New things are on the whole pretty frightening for me, so it takes me longer than the expected average to get used to the place, the various elements associated with the surroundings (e.g. customers, noises, areas of work etc). It also takes me longer to adapt to the different tasks expected of me. Even when I am used to everything associated with the job, unexpected changes on a day-today basis can be a minefield for an individual like myself who thrives on established routine.

By now, you are probably beginning to understand some of the difficulties I have to contend with in any given situation, this scenario in question being the workplace. Where does eye contact fit into all this? Well, let’s add that into the equation. The employer is explaining to me the various steps of the task they would like me to complete. During this time I am looking at them in order to convey several things: firstly, that I am interested in what they are saying (whether I am or not, I am of course expected to pretend that I am). Secondly, that I am taking in all of the information they are giving me. Unfortunately, in a rather ironic state of affairs, I find that the more energy I put into trying to look as if I am taking in all that is being said, the less likely I am to actually succeed in doing so. Because of the way in which my mind operates, I respond much better to instructions and am much more likely to complete them to a satisfactory standard if they are broken down into smaller, well-explained chunks. It is very important for somebody to be specific when talking to me and explain what they want me to do in exact terms rather than general ones:  Other people usually read between the lines, whereas I will likely not if any ground for potential confusion is given.

I am also very anxious by nature. Anxiety Disorders are the daily reality faced by a disproportionately large number of autistic people, an unfortunate by-product of living in a society that does not fully understand us. It is very common for me to worry about how other people are perceiving me and consequently this also detracts from my ability to concentrate.

If it were socially acceptable for me to listen to somebody without looking at them, even to have your eyes closed in order to focus purely on what was being said, I would be in a much better position to accurately carry out instructions and take in more of the information given to me.

Added to this, I seem to have developed an aversion to looking at people who make me feel ‘uncomfortable’ for whatever reason. This may be a result of their personality, which I might find intimidating, or because of a certain quality of their eyes. I find it nigh-impossible to explain this conundrum, but there is something about certain people’s eyes that immediately makes me feel comfortable, and something about other people’s eyes that makes my skin crawl, meaning no disrespect to them. This judgement has little to do with a person’s character and may be (seemingly) ludicrous, but it can also come about as a result of a difficult social encounter with a person that has led to considerable embarrassment or other negative feelings.

There are a few people who I can look at without feeling the slightest amount of discomfort, certain people who I deem to have ‘nice eyes’. I myself do not necessarily understand how I judge this- the closest I can manage in terms of a description is along the lines of me feeling welcome to look at someone. I do believe that the idea of eyes being a window into a person’s soul is no exaggeration, even if my own assessments are sometimes inaccurate. Generally if somebody smiles at me or makes an attempt at humour during our first meeting, I feel far more comfortable around them and can generally manage eye contact without much trouble.

With others, I find that eye contact to be tremendously painful. Again, I struggle to describe this feeling, but the closest I can manage is saying that some people’s gazes seem more piercing than others, which gives me a feeling that I am being judged, or that said person can see something about me that I would rather keep a secret. Such thoughts are perhaps ridiculous, but arguably this very instinct has helped us to survive as a species, whether autistic or neurotypical!

My assessment of this can work both ways. I remember an individual in my class at college, a very kind, compassionate individual who was very popular. Unfortunately I found her gaze very piercing and as a result did not speak to her much as I found eye contact with her difficult. Any fear I had in this instance, regardless of any instinctive intuition coming into play, was entirely unfounded. In another instance, at university, I had a particular tutor who, if I’m honest, actually subjected me to what might be considered borderline bullying. Usually this was in front of other people which made me even less capable of maintaining eye contact and constantly on edge when around him. From the first, before any of the bullying started, I found eye contact with him immensely difficult. On a side note, you’ll be pleased to know that this particular experience had a silver lining: I have become much more proficient at standing up for myself.

Over the years I have thought about many alternatives. If I’m feeling very uncomfortable, I won’t necessarily force myself to make eye contact these days, although I generally try my best.

I have known a number of autistic people who have used dark glasses and/or sunglasses as a way out of making contact, seeing as the lenses often hide your eyes completely, meaning that the person you’re talking to remains unaware that you are not looking at them.

Recently I tried another tactic that I long been aware of. In truth, I had never had the courage to try it before, for fear of being found out. I wasn’t sure if it would actually work. I tried it on my own dear mother who was completely unaware of what I was doing and, until later on when I asked her about it, did not realise that I had not been looking her in the eye during conversation for the best part of an hour. Instead I had been looking at her forehead, specifically at the very top of the nose just above the gap between the eyes. From the other individual’s perspective, it can appear as if you are looking directly into their eyes, whereas in fact that is far from the truth.

 

 

 

My Next Project

Aspergers has brought about many blessings as well as challenges throughout my life.

This is why, for my next series of YouTube videos, I have decided to team up with the generous members of the Reddit Aspergers group to bring you a wide range of stories from those affected by the condition. These will be brought to you through a series of videos accessible from both my YouTube channel as well as across my other social media platforms.

I wanted to give something back to the Reddit community, to acknowledge the fact that their generous support provided me with my first viewers and subscribers, as well as feedback. Now over 600 subscribers strong, my channel continues to grow as I produce more content with the goal of educating the world about Aspergers and Autism.

A Tale of Autism and Unemployment

I begin every Saturday morning with a pleasant, albeit long, drive to Hay-On-Wye, Wales, where I work in one of the town’s many bookshops (Frequently voted among the best!) It’s honestly one of the highlights of my week and I thoroughly enjoy my time there.

The rest of my employment history has been, alas, a tale of woe.

In some ways it is immensely painful and perhaps even risky to write this; but after over two years of chronic unemployment, something has to give. This is not okay. My voice and story need to be heard. Needless to say, this led me to research the topic of autism unemployment a while ago – and I was shocked by what I found.

Back to me, for a moment. I find myself at a fork in the road from which I cannot move on. I am in desperate need of a job, but so tired of every attempt I have made to hold down one that slowly (but inexorably) the fight has been driven out of me. Every time I have tried I have been shot down.

This is not a ‘rant’ post. If anything this post is meant to be an eye-opener. So many others are going through the same struggles. I am one of the luckier members of the autistic community: that is to say that I am part of the 32% of autistic adults in the UK who are in any kind of paid employment, according to National Autistic Society statistics. Four in ten unemployed autistic adults have never worked. Of those unemployed 77% say that they want to work; but only 16% of adults with autism are in a full-time position. (These are UK figures).

Recently I came into contact (via the internet) with a 49 year-old man with Asperger’s Syndrome who, still living at home, has started to volunteer in a local shop, after swearing that he would never work again following the way in which he had been treated by previous employers.

If you know anything about autism and Asperger’s, you will know that many on the spectrum possess qualities that may be put to good use: qualities that may be considered special gifts. This is why the current state of autism employment is such a tragedy. So many of us have talents that are being overlooked by employers, who are unwilling to support autistic people in the workplace, in spite of their claims that they are ‘Equal Opportunities Employers’.

The unfortunate but unsurprising truth is that the majority of mainstream work environments are not suited to autistic individuals, nor are many workplaces capable of catering to the needs of those on the spectrum. Work is, for most people, an intensely social experience and the social skills of an employee often play a part in their workplace success and career progression. Socialising on a regular basis and reading social cues, even for those of us who are experts at ‘masking’* our autistic traits, can be an immensely difficult experience. Many of us take the words of other people very literally. It is not uncommon for us to misinterpret unspoken messages in conversations, which can cause confusion, disruption, work delays and even conflict. Workplace bullying is, unfortunately, encountered by many autistic individuals who are victimised due to their differences.

The work environment is often a busy one, fraught with noise, people bustling about and constant demands upon an individual, whether that be personal performance goals and deadlines, etiquette required when working with the public and other expectations placed upon the worker by the employer.

Many autistic people experience heightened sensory perceptions and may exhibit extreme reactions (that can manifest themselves both internally and externally) to sounds, sights, smells, tastes and feelings. Some like myself may have difficulty working quickly and/or under pressure due to poor, underdeveloped motor skills (hand-eye coordination). We may also struggle to take in complex instructions and might need these to be explained to us very clearly in order to avoid embarrassment and confusion.

A number of us, myself included, have developed mental health disorders such as Anxiety and Depression. Given the difficulties faced by us as autistic individuals growing up in a predominantly neurotypical (non-autistic) world, this is hardly surprising. In my case, Anxiety is my greatest enemy. Whilst I am not officially diagnosed with an Anxiety Disorder, my daily use of prescribed anti-depressants indicates just how much of an impact Anxiety has upon me living my life. My Saturday job aside, the last paid employment I undertook was a full-time position sorting books in a warehouse. On paper, it seemed as if it was ideal: I would be able to put my wide knowledge of books and authors, as well as what I had learnt about unusual books from my Hay-On-Wye job, to good use. In reality I lasted three days in the position.

Unfortunately many of the excellent skills I could have applied to the job because of my autistic traits were overlooked due to an unwillingness to compromise on my employer’s part. (Continue reading for for information on the positive aspects of autism in the workplace).

The environment, which was noisy, cluttered, enclosed, dull-grey in colour and busy as a hive of hornets was sensory hell for an autistic person. Then there were the performance demands. After only a very short time in the role I was being asked to work at speeds I simply wasn’t capable of. For every time I did something right, something new and unexpected set me back three paces in the wrong direction.

I began to experience what I now unfortunately associate all too regularly with the mainstream work environment: panic attacks.

I find myself, at 23, feeling burnt out. I just don’t care anymore. Anxiety is a natural response created by our mind to help us avoid harm and danger. An Anxiety Disorder, whilst being a nightmarish, compromised  version of basic human instinct, does have a basis for existence in the daily lives of many of us. Going into the workplace means going into an environment where I am looked upon differently to others, where I struggle to deal with the people, let alone the workload. I must work in a manner that pleases my non-autistic employers, all the while knowing that we on the autistic spectrum should be encouraging both ourselves and others to ‘drop the mask’ as understanding of autism increases in our society.

If my body is telling me not to put myself in a situation that is likely to cause me stress, embarrassment, panic and depression, why should I ignore what it is telling me? Whilst it is true that the best way to deal with many fears is to face them, this is not a fear that I can ‘defeat’ or ‘overcome’ through the act of facing it. I will always be different, no matter what I think of that fact and no matter what I do to hide or change it. Luckily for me, I am wise enough to not only accept my autism, but to appreciate the many gifts that it grants me. For those reasons I would never wish to change it in spite of the many difficulties it brings.

I am not going to end this picture I am painting with a big ol’ dark, brooding sky, however: I am going to end it with some ‘happy little trees’ to quote Bob Ross. I am justified in doing so, because autism brings with it many skills that some employers have recognised. Others are gradually seeing the light as well.

Take me, for example. I have the ability to focus on particular tasks with immense attention to detail. I once heard autistic focus described thus: where a neurotypical might take in all that they see and then form an overall idea or opinion, an autistic person is very likely to work in the opposite way, taking in one or two small parts of the whole and focusing intensely on these details, before coming to an overall conclusion. This, for obvious reasons, is an incredibly valuable skill to possess in a work environment. Autistic people have the capacity to see problems from an entirely different point of view, making them invaluable teams members. After all, a group comprising of a wide variety of people with alternative approaches to a task will increase the chances of overall success.

Then take into account what I mentioned earlier: my interest in books and authors. People with autism and Aspergers obsess over certain subjects that are referred to by us as ‘special interests’. Often these interests are all-consuming to us to the point where little else matters beyond them (at least in a relative sense, we care deeply about our loved ones and other aspects of our lives, of course). Needless to say, the more a person knows about a particular subject, the more likely they will be able to talk about the subject with conviction or put their knowledge to practical use. When the subject of these special interests contain areas of professional importance, the sky can truly be the limit for an autistic person working in the right environment with the right people and the correct adjustments made for them in the workplace. There was a very good reason why Hans Asperger often referred to the children he studied as ‘little professors’.

Also worthy of note is the fact that autistic people are known to be (on the whole) very loyal and routine-orientated. Most take matters of time-keeping and similar formalities very seriously, making them, in many respects, model employees.

Thank you for reading. Peace and love to you all.

Joe

*Masking is the term used among members of the autistic community to denote somebody trying to ‘hide’ their autistic traits in order to better fit in with mainstream society.

 

 

 

Shock, Shame and Self-acceptance: A Tale of Autism Diagnosis

Being diagnosed with with an autism spectrum condition is a hugely personal experience. Each individual will react differently to the news of the diagnosis.

I myself, being only seven years old at the time, remember very little concerning the circumstances of my diagnosis. I vaguely recollect being asked a number of questions that at the time seemed strange to me. Following this assessment my parents later came to tell me that I had a condition known as Asperger Syndrome, which at the time meant nothing to me. Even though I had few friends and indulged excessively in the same repetitive interests, I most certainly did not identify myself as ‘different’ growing up.

When I asked my parents about what having Aspergers meant, they told me that I saw the world ‘through a different lens’. It was, in spite of its lack of detail, a good answer for a young child to hear. It made me aware that I was a bit different without making me feel inadequate in any way, encouraging me to take an interest in learning more about my condition when I was old enough to understand the implications.

Because I was diagnosed at a relatively young age, support was put in place during my time at school and I was able to receive some recognition from staff.

Others, however, have not been so fortunate as to have access to an early diagnosis. Many live for a significant amount of time unaware of their diagnosis. It is not uncommon for people on the spectrum to be unaware that they are autistic until well into adulthood and later life. Some live their entire lives without ever being recognised as having an autism spectrum condition.

For many, news of a diagnosis may bring about a huge sense of relief. Suddenly things begin to make sense for the individual: there is both a reason and a name for their ‘different’ behaviours and approach to the world. They can now live a more fulfilling life with the new understanding of self that they have attained. A diagnosis may also elicit understanding and support from others, affecting a relationship with a boss, colleague, family member, friend or partner in a positive way. So many questions are answered with one word: autism.

In other cases, however, a diagnosis may result in grief and/or an unexpected shock for the individual. Often the person diagnosed may feel frustrated knowing that problems throughout their earlier life might have been prevented had they known about their condition sooner. To others it may come as an entirely unwelcome surprise: they may never have associated themselves with autism and they might have some very false ideas about what autism is, based on what they have seen or read from the media. They may also fear the supposed stigma which (unfortunately) exists in some places in society, worrying about whether the people in their life will accept them or view them in a new, unwanted light.

Because the autism spectrum encompasses such a wide range of people with different abilities, it is easily misunderstood, with higher functioning autistic people (or people with Aspergers) sometimes being labelled as awkward geniuses and those who are lower functioning being viewed as people who are in constant need of care and special attention. Whilst there is some basis in fact for these stereotypes, in reality there is a very large ‘grey area’ , since every autistic individual is affected differently. Alas, this very blessing, which is part of what makes autistic people so interesting, is one of the reasons why autism is often so hard for neurotypical (non-autistic) people to understand.

Regardless of whether they are happy or not, eventually the diagnosed individual has to face the facts: they are autistic. Armed with this knowledge, they must make the best of their circumstances. Knowing who to tell and when to disclose their condition is a key issue. An individual’s own discretion and personal preference are of paramount importance in this situation, and I believe it should be left to them alone to decide who receives the information (provided, of course, that they are of an age where they are capable of making their own adult-level decisions).

A diagnosis of autism can be life-changing and I believe that it is a step in a positive direction. The world is more aware of autism than it has ever been, but raising acceptance levels for autistic individuals is crucial.  Notably, many females (far more so than males) go undiagnosed because of the cliche of autism being primarily associated with men. Furthermore, it is believed that autism affects females differently. Many females are more skilful when it comes to ‘masking’* their autistic traits than their male counterparts. There is also a disparity in the amount of people diagnosed with autism in non-western cultures, perhaps due to a lack of awareness of the condition and or/resources.

If you are autistic, it is important to remember that you are not alone. Autism brings with it a range of talents which, in many cases, outweigh the problems that can accompany the condition.

Peace and love to all my autistic and non-autistic friends,

Joe

*Masking is a term used in the autistic community to describe a person who is attempting to hide what they consider to be their ‘obvious’ autistic traits. They may be doing this as a way of trying to fit in, and may not even be aware that they are doing it or that they are on the spectrum.

 

The ‘Asperger’ Controversy

Recently I spoke to a man named Quinn (also known as Autistimatic on YouTube and Twitter) regarding our various experiences as people on the autism spectrum. He shared some valuable insights and during our discussion we touched upon the current debate among the autistic community over the usage of the term ‘Aspergers’ and whether it is currently acceptable to use the word to describe individuals with an autism spectrum condition.

The debate in question began when recent evidence came to light identifying Hans Asperger, the man responsible for a great deal of what we know about Aspergers today and the man after whom the condition is named, as a Nazi sympathiser. Furthermore, Aspergers has now been removed from the Fifth Diagnostic and Statistical Manual of Mental Disorders (the DSM-5), with the diagnosing of Aspergers being discouraged by a number of professional practitioners.

I must admit that I am stubborn to give up the word. Aspergers is what I was diagnosed with and is, for better or worse, the word I have identified myself with for the past sixteen years (I was diagnosed when I was around age seven.) I do not believe in this case that a label is in and of itself harmful; rather we should be focusing on what the label means as opposed to the actual label itself.

Let me explain further. Society is now largely aware of the term Aspergers and possesses a reasonable amount of understanding in regards to what it is. I disclosed my Aspergers when being interviewed for my current job and my employers not only knew what is was but possessed an understanding of how to help me work at my optimum level. The word ‘autism’ from my personal experience has, in comparison with the use of the term ‘Aspergers’ elicited a wider range of responses from the non-autistic members of general public, many of whom are still misinformed and many of whom, alas, still associate autism with the classic ‘Rain Man’ cliche.

As a YouTuber I find myself in a dilemna. I intend to keep using the term Aspergers to describe myself and others for the foreseeable future, as many of my viewers identify with the term much as I do myself. I also have viewers who identify as solely autistic, viewers who use both of the aforementioned terms to describe themselves, and those who are undiagnosed but who suspect that they have the condition. All are welcome on my channel including Neurotypical (non-autistic) people, some of whom may be watching to educate themselves or because they have people in their lives who are affected by the condition.

Whilst I worry that using the term Aspergers may be a turn-off for some viewers, I take consolation in the fact that many successful and well-informed YouTubers (such as The Aspie World) continue to use the term.

Joe