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What is Asperger's Syndrome?

What does Asperger's mean?

What does autistic mean?

What are Aspies and NTs?
How common is it?
How can you tell if someone has Asperger's Syndrome?
Is there a test you can take for Asperger's Syndrome?
How is Asperger's Syndrome diagnosed?
Is Asperger's Syndrome just a  fancy way of describing people who are very intelligent?
Is Asperger's Syndrome just a  fancy way of describing people who can't make friends?
Is Asperger's Syndrome just a fancy way of describing sci-fi geeks, train spotters, and computer nerds?

What Causes Asperger's Syndrome?

Do you recommend any form of treatment for Asperger's Syndrome?
What is the prognosis for people with Asperger's syndrome?
Why have I never heard about Asperger's Syndrome before?
Where are people with Asperger's Syndrome?
Are there women / girls with Asperger's Syndrome?
Where can I get help and support?
Where can I get more information?
Where can I make contact with people in a similar situation?
What are your credentials?

What is Asperger's Syndrome? Asperger's Syndrome is a neurological condition on the autistic spectrum that affects the way a person relates to others. It is characterised by difficulty in social relationships, differences in the way a person experiences and interacts with the world, and a different style of learning and communicating. Neurological means it is to do with how your brain works... you are just born that way. It is not something you can catch or pass on to other people like a virus. Neither is it mental illness... it cannot be induced by trauma or neglect and it cannot be cured with therapy or a change in lifestyle or attitude.  It is more common in males than females, but anyone of any race or gender can have Asperger's Syndrome, and it is a lifelong condition, so age makes no difference either. Having Asperger's Syndrome does not mean you are sick or unhealthy and it does not shorten your life in anyway. Having Asperger's Syndrome just means you are different in ways that can sometimes make life difficult.

What does Asperger's mean? Asperger's syndrome is named after Hans Asperger's, the doctor who first recognised and described the symptoms back in the 1940's. It is sometimes just called autism or H.F.A. (High Functioning Autism) and sometimes it is called A.S. for short. The more widely known, rarer, and more severe autistic spectrum condition commonly referred to as autism is sometimes called Kanner syndrome, after the doctor that discovered it also.

What does autistic mean? The word 'Autism' is derived from the Greek word meaning 'self' and is believed to have been first used in the English language as recently as 1912, by a man called Eugene Bleuler, who was using it to describe the self absorbed or those escaping from reality. In theory you could describe anyone as autistic, in practice though the word has taken on a new and extended meaning since it was simultaneously used by both Kanner and Asperger's to describe the syndromes they were separately identifying during the 1940's. Kanner's work was the most well publicised until very recently, so to many the word 'autism' is still synonymous with retardation and severe disability, but is in fact legitimately used to describe any condition on the autistic spectrum... which includes people of widely varying levels of ability.

What are Aspies and NTs? Aspie is a popular informal term for describing people with Asperger's syndrome, though there are many others. Some people prefer to use terms like this so they can say they are an Aspie rather than that they have Asperger's Syndrome, thus emphasising that the characteristics Asperger's Syndrome describes are part of who they are rather than something separate from them that can be cured. While I agree with this sentiment, I also feel that to say I am an aspie implies that it is some special category I belong to in much the same way as saying I am British or I am female. Asperger's Syndrome describes certain aspects of me, but it is not something I am. Therefore I prefer to say 'I am person with a diagnosis of Asperger's Syndrome' or simply 'I am person with Asperger's Syndrome', not because I see it as something separate to me but because I don't want it to define me. NT is short for neurotypical. It is a term used to describe people with more common or typical neurology (brains). Many people prefer to use it instead of words like 'normal' because there is no such thing as 'normal' really, just majority and minority.

How common is it? In the UK the best estimates are that just under 1% of the population is diagnosed on the autistic spectrum... That's over 500,000 people, about a third of which will be children.  Therefore it is fair to say that Autistic spectrum conditions are not rare and Asperger's syndrome is not rare. In fact, in the case of Asperger's syndrome there are many people who don't get diagnosed, either because they have always assumed other reasons for their problems and are not aware of the condition or because they choose not to be diagnosed for fear of discrimination, so in reality the numbers may be even greater. Asperger's Syndrome is the most common autistic spectrum diagnosis, being around 40% of the known autistic population. Kanner Syndrome / Autism makes up just 5%. More detailed statistics can be found on the National Autistic Society website.

How can you tell if someone has Asperger's Syndrome? Not very easily. Asperger's Syndrome is what they call an 'invisible' disability. That is firstly because there is nothing physically distinguishing about people with Asperger's syndrome. Superficially, we look and sound just like everybody else, and will be of at least average intelligence and able to talk. Secondly, the problems that people with Asperger's syndrome experience are quite often something they are experiencing on the inside but not something that other people can see happening... people just see the consequences, such as someone appearing to be rude or weird,  and jump to their own conclusions as to the reasons. Thirdly, as people with Asperger's syndrome go through life, many learn to compensate for some of the difficulties they have and try to hide their problems, so it tends to become less easy to spot as people get older.

Is there a test you can take for Asperger's Syndrome? No. There is no pass or fail test. They may be able to test genetically in the future, but genetics alone may not hold all of the answers and other factors could still be involved as well. There are identifiable differences in the way people with Asperger's syndrome use their brains which can be measured in experiments, but there is still too much variation in peoples brains normally for it to be of use in diagnosis. There are quizzes and questionnaires where people with Asperger's syndrome will on average score higher or lower than the rest of the population, but in themselves they are not adequate for a diagnosis used alone either.

How is Asperger's Syndrome diagnosed? Asperger's syndrome is diagnosed using lists of diagnostic criteria. These are being reviewed and changed as more about Asperger's syndrome is understood, and there are various different sets of criteria available. A professional will want to see evidence that an individual has the characteristics described by the diagnostic criteria, that they have been present throughout their whole life, and that there is no other reason why they might be that way. They may use different techniques to establish this, such as interviews, observations, questionnaires etc. but at the end they give their professional opinion as to whether a person should be classified as having Asperger's syndrome or not.

Is Asperger's Syndrome just a  fancy way of describing people who are very intelligent? No. There are lots of highly intelligent people in this world who have none of the social and communication problems that people with Asperger's syndrome do, and having Asperger's syndrome does not automatically mean that you must be very intelligent either.
Is Asperger's Syndrome just a  fancy way of describing people who can't make friends? No. There are lots of reasons why a person might have trouble making friends or keeping them. Some people with Asperger's syndrome have more luck with friendships than others, but are generally at a disadvantage because we lack some of the key skills and abilities that are an important part of making and maintaining relationships with other people. So, not all people with Asperger's syndrome lack friends, and not all people who lack friends have Asperger's syndrome.
Is Asperger's Syndrome just a fancy way of describing sci-fi geeks, train spotters, and computer nerds? No. People with Asperger's syndrome can have all sorts of different interests, and there are lots of people who don't have Asperger's syndrome who like those sorts of things too. Certain subjects do seem to attract people with Asperger's syndrome just because they appeal to the way our minds think, but they do not define us. Asperger's syndrome is a serious condition which causes people real problems with coping and functioning, it is not a lifestyle choice.

What Causes Asperger's Syndrome? They don't really know. There is a lot of research going on, and lots of possibilities are always being identified. It might be that there is more than one cause or even a combination of causes. Current research suggests it is, at least in part, genetic.

Do you recommend any form of treatment for Asperger's Syndrome? I am not a medical professional, I do not use any treatments myself and have never had any, so I am not in a position to recommend anything and would not presume to do so. I can only tell you my own personal opinions. If an individual is suffering and they want to be alleviated from that suffering and they are aware fully of the risks and implications of that, it is their right to choose what treatment they feel is appropriate for them, if any. When that individual is a child and adults are making that choice for them I think sometimes the child is forced to try and change in order to please other people and fit in, without their long term best interests being considered. It is my personal opinion that children with Asperger's syndrome must learn how to be people with Asperger's syndrome because that is what they will always be, and I believe that some forms of so called 'treatments' interfere with that. That doesn't mean that they shouldn't have any help, and where a change in lifestyle or extra support and information would be beneficial I see nothing wrong in that either, and of course, behaviours that are a real problem should be addressed, but the error should not be made of confusing the needs and wants of the child with the need and wants of the people around them. Behaviour that differs from the norm is not inherently bad just because it is embarrassing or mildly inconvenient or fails to meet peoples expectations for a person. I am all for making life better for people with Asperger's syndrome... but it has to actually be doing that.

What is the prognosis for people with Asperger's syndrome? Most importantly it is not something you can die from and it does not make you feel sick or ill. There can be other associated problems which may affect your health, but there is no reason why you should not be expected to live out a full and healthy life. Part of the definition of Asperger's Syndrome is that you be of average or above intelligence (the minimum IQ required for a diagnosis is 70) and are verbal. Most of the impact of Asperger's syndrome is on a persons social and professional life... their relationships, friendships, education, employment, and their ability to fully participate in society. The degree of this impact is varying. Some people struggle in mainstream education and some are unable to work, while others may excel academically and others may have very successful careers. Some remain single, some do have relationships, and some marry and even have children. For some Asperger's syndrome is a personal and private struggle that other people rarely glimpse, while for others it may be an insurmountable obstacle to successfully functioning in day to day life. While most greatly benefit from extra support and understanding as children, as adults the vast majority become either semi or fully independent. People with Asperger's syndrome are people just like everybody else, and all have different personalities and experiences.

Why have I never heard about Asperger's Syndrome before? Asperger's syndrome was first identified back in the 1940's but was not followed up any further until the 1970's. It didn't officially appear in the Diagnostic and Statistical Manual of Mental Disorders until 1994. It is quite widely heard of these days, but the chances are unless you know someone with the condition or watch documentaries about this sort of things on TV you might not have heard of it. There is also a lot of bad information out there, some of it fictional, some of it just unrepresentative, that leads to people thinking they know what Asperger's Syndrome is when they don't.

Where are people with Asperger's Syndrome? Everywhere. You can see some of us over at the Autistic Adults Picture Project. Even if you do not know it, it is very unlikely that you have never met a person with Asperger's syndrome. Some of us, particularly those good at hiding or coping with our differences, prefer not to announce that we have Asperger's Syndrome to everyone we meet. It's not easy to explain to people and most people aren't interested anyway.

Are there women / girls with Asperger's Syndrome? Yes, lots. It is true that the number of people being diagnosed who are female could be anywhere between only 1 in 5 or 1 in 10, so we are outnumbered in that sense, but with millions of people on the spectrum worldwide that still means there are quite a lot of us.

Where can I get help and support? This is an almost impossible question to answer because this site is visited by people from all over the world, but even just within the UK services available vary greatly from place to place. The only thing that you can say with certainty is that overall there are not the services and support there should be, but then that is the case for a great many things. My best suggestion is to get in contact with a national, regional, or local autism/Asperger's charity or organisation. Even if they can't help you themselves, they might be able to put you in touch with people who can or who know where to go in your area.

Where can I get more information? If you can't find what you are looking for on this site then the resources section is where you will find a link to it... websites, books, organisations etc.

Where can I make contact with people in a similar situation? There are numerous chat rooms, forums, discussion groups etc. that you can join. I have listed those I know of in the community section. I also run a pen pal list, a chat room, and several discussions boards of my own through this site.

What are your credentials? I am just an ordinary person with no specialist knowledge or qualifications and I share my opinions and interpretations freely. Most of what is written here comes from my own experiences, though I do speak to others and read about this subject widely. I was diagnosed with Asperger's Syndrome by Dr Mary Myers F.R.C. Psych., Consultant Psychiatrist in Learning Disabilities, Sheffield, in May 2002. She had "absolutely no doubt" that I have Asperger's Syndrome, and that's good enough for me. This site is about me and for people like me who are receiving this diagnosis, of which there are many, and I make no claims beyond that. I used to think that I was the same as other people, but somehow more stupid, bad or lazy, and that is what other people thought about me too. My diagnosis helped me to understand that I am actually just different and in what ways, so now I can slowly re-build the life and the personality that was almost destroyed by the ignorance and arrogance of others. I don't care what you want to call it, I just want to help people understand it.
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