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

An Important Message

Something occurred to me very recently, dear readers and YouTube viewers, that I felt was important to share both here (my blog) and on my YouTube channel.

Although I try to make it clear in every video and blog piece that I publish, all opinions expressed by me on the subject of Autism and Aspergers are just that: opinions, based on my experiences.

I cannot claim to speak from the perspective of a non-verbal low-functioning Autistic person who requires assistance in every aspect of their life. I have no idea, even as somebody on the spectrum, of what difficulties such a life might entail. Can I act as an ambassador for other Autistics and help to raise awareness of the condition by any means that are available to me

Absolutely.

And I will always  continue to do so.

Inspirational Autistics I Have Known: Part III

In this series of posts, I will be writing tributes to a number of autistic people I have known throughout my life who have inspired me in some way.

The individual I’m writing about for this piece is one of the few women on the spectrum I have had the privilege of meeting: a very intelligent and inspiring lady.

We’ll call her Ellen. One of the hobbies I enjoy in my spare time includes communal camping which is how I met Ellen about four years ago. At that time Ellen had joined the group mainly because her partner was also a member.

To begin with, I wasn’t quite sure what to make of Ellen. My ability to recognize Aspergers is not as fine-tuned when it comes to females seeing as there are, on average, far more (known) cases of males being on the spectrum than females. As I previously stated, I have met maybe two to three diagnosed autistics in my life (thus far) who were female.

Nonetheless, once I put two and two together it became quite clear that Ellen was indeed autistic. Not knowing whether it was a subject she wanted to talk about, I kept quiet about Aspergers and never raised the topic with her until many years later, although I knew for certain (from what others had told me) that she was affected by the condition.

I slowly learned that Ellen had a number of special interests, one of which (her interest in the music of the band RUSH) I also shared.

It’s always taken me a long time to get know people, and consequently, it is only recently since I have started writing and speaking about Aspergers, that Ellen and I began to talk about our experiences. She was very excited to hear about the book I am planning and I hope that some of her insights will eventually feature within its pages.

Unfortunately, Ellen’s difference in the way she socializes has led to public confrontations in the past. Sometimes her words have caused offence where none was intended, due simply to her not picking up on another person’s tone of voice or conversational intent. In many cases, this greatly upset Ellen, who did not understand what she had done wrong and was not sure how to remedy matters. It is a fact that our lack of social skills as autistics can lead us towards the path of unforeseen and often unnecessary conflicts.

Since these events, Ellen and I have spoken about our shared experiences and she is in full support of what I do in regards to Autism Awareness. I will be showing her my book about Aspergers upon completion before it goes on general sale.