By PJ Hughes
Key Themes: autism, Asperger syndrome, self-help, mental health services, activism
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Autism is a condition that affects the way an individual relates to the world around them. Its diagnosis is based on, amongst other criteria, social interaction and communication. It also affects each individual differently, which is why it is often called the autistic spectrum. Many in the field refer to the autistic spectrum as either ASCs (Autism Spectrum Conditions) or ASDs (Autistic Spectrum Disorder. Within this spectrum is a condition called Asperger Syndrome, which lies at the intellectually high functioning (this relates to an IQ that is average or above average) end of the spectrum. - PJ Hughes
'Reflections..' is a highly informative book about Autism and Asperger Syndrome, which, uniquely, is written by someone who has been diagnosed. This book is essentially autobiographical. PJ looks at the field of autism by casting an Asperger eye over the various terminologies used and the various diagnostic criteria. He also looks at the autistic traits and how he perceives they relate to him. He makes notes of his own life and makes observations of the world in general.
About the Author
PJ was born in Woolwich, London in 1968 and moved north in 1988 to go to polytechnic, as it then was, and has stayed there ever since. He currently lives in Sheffield. He was diagnosed with Asperger Syndrome in 1999 and is actively involved in activities relating to the Autistic Spectrum. Not only does he give talks, but also writes about the subject and takes part in research. Other activities include being a member of the National Executive Committee of the Home Office Disability Support Network (HODS), member of the disability subgroup in Sheffield and Autism Buddy Network leader at the Home Office. One of his long-term ambitions is to work full-time in the disability field, particularly in autism.
Autism: order or disorder
The use of the word disorder comes from psychological terminology to describe anything that is not considered to be neurotypical. In a way it is also a rather negative term; sometimes I feel it is offensive. I view the autistic spectrum as a particular type of order because of how the autistic brain works. I do, however, recognise that disorder is part of medical terminology and usage of this word is rather confusing. The autistic brain intuitively systemises (Baron-Cohen, 2003) rather than intuitively empathises. This idea about the usage and potential confusion of using the word disorder has come from an email discussion I had with a psychologist many months ago. This is because the autistic brain naturally tends to head straight for a systemising approach. This is why, I believe, that certain subjects such as mathematics and computers are more autism friendly. It has also been noted that there are people on the autistic spectrum who are good at visual thinking. This means that visual thought is processed through working on geometrical information even if relevant equations are not used in a more blatant manner. Thus, it can be taken that the autism described is a (different) type of order.
During the email discussion I have just mentioned with the psychologist, we spoke about the use of the word disorder. We were looking at the types of words that would be more appropriate as the word disorder is a negative one. Between us, groupings included order and phyla. This is because the autistic spectrum can be described as one way of how the brain works. Personally, I often call the overall condition the “autistic spectrum”, whilst the Autism Research Centre at Cambridge University, of which Simon Baron-Cohen is co-director, for example, use the “autistic (or autism) spectrum conditions”. Furthermore, people with autism often tend towards a certain, individual sense of routine and structure. Therefore, I believe, there is a tendency towards a microcosmic order and, consequently, referring to autism as a disorder is very confusing.
I would, however, put forward another possibility using autistic spectrum conditions (instead of autistic spectrum), which is often shortened to ASCs. This is because abbreviations are often used. Another problem arises because some people on the autistic spectrum don’t like using the word condition. This means there will be endless debates over terminology. Personally, I just use the “autistic spectrum”. When using abbreviations, I tend towards ASC rather than ASD because, firstly, if I shortened my preference of autistic spectrum to AS, there would be confusion with Asperger Syndrome, which is usually shortened to AS. Secondly, I prefer the usage of Autistic Spectrum Conditions to Autistic Spectrum Disorder. It feels a little grammatically strange to me to use Autism Spectrum Conditions because autism is a noun and autistic is an adjective. Here, we are describing a range of similar conditions on a spectrum, so I feel the adjective is more appropriate, i.e. Autistic Spectrum Conditions.
As I have just mentioned, some people don’t like using the description of condition. I respect this viewpoint even though I don’t find it offensive myself. This kind of disagreement demonstrates how difficult it is to use words that describe autism, or any other disability for that matter, without someone finding something offensive. This is why I firmly believe that wherever possible word usage should be individual led. For this book I shall be using the words “autistic spectrum” if I am referring to the subject by name and the “condition” if I am not.
What is different and how does the difference affect autism?
I have attended many lectures, talks, conferences etc. about autism. A common thread has been to describe the condition as a difference. That is, we have different ways of doing (some) things. Often, the speakers would look at the many positive aspects of the condition as well. The question that I suspect you might be asking is: why am I discussing this? The reason is this: what am I different from? I hope I can give an insight into this.
I note that most of the speakers are neurotypical and give their understanding and experience of the subject from the objective point of view. Quite obviously, from their perspective we are different. However, there are also quite a number of personal perspective speakers, of which I am one, who talk about our own experiences of the condition. In effect, I believe, the difference is inverted. The argument is that we are all different in both an individual and group sense. To all intents and purposes, we all have our own ideas of what “normal” is. I suppose that difference and normality both have a strong subjective element to them.
I do also think there are problems with using the words difference and normal. This is most apparent in bullying, particularly while at school. They come in the form of “argh, you’re different” or “argh, you’re not normal” and so on. These are issues that need to be tackled by the relevant experts in the area of the bullying. I shall be looking at my own experiences of bullying later and, hopefully, giving some ideas on how to eradicate these situations. I shall, however, note one important thing at this juncture: Talking positively about autism and disability in general should reduce such problems. With the right education and support, those on the autistic spectrum can make valid contributions to society because the nature of the condition means that we can do quite complex things because only the “autistic nature” can push such things forward. By “autistic nature”, I am referring to areas like obsessions and social disconnection which achieve good results and not having them will not get us anywhere. Unfortunately, I feel this may take time because there is still a lack of understanding of disabilities in general. Despite this, I do think there is increasing understanding. I do agree with a fellow personal perspective speaker, Luke Jackson (2002), who suggests “Different is cool”. This is a good philosophy to take, even though we could debate the meaning of difference all day! After all, how could a sports team win if sports teams were all the same?
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