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The following spiel is called Aspergers Syndrome - A Personal Perspective. This piece contains the views of the writer only, and should only be used as a guide, not a bible so to speak.
About me
I was born in 1965, and I live in Ballarat, a regional city about 110 kilometres west of Melbourne, the capital city of the state of Victoria, Australia. I had lived in Melbourne all my life, except for two years when I lived in Canberra - Australia's national capital, and two years in Ballan. It's important to point out that my version of AS is mild compared with a lot of others. But that doesn't mean that my experiences are any less relevant to either parents or actual AS people.
I am unemployed and will probably remain so for the rest of my life. The reason (to me) is simple. Employers expect two things, and make them what are known as "inherent requirements" of the job. The first is flexibility. To put it another way - you do whatever is needed at the drop of a hat. It totally lacks routine - essential for those with AS and an aspect it shares with Autism. The second is team environments. This is contrary to the need for autonomy - also a trait AS shares with Autism.
An example of this is what happened in my six months as a civilian employee with the Defence Department in Canberra (the reason I was there for two years). It all surrounds a discriminating bully of a Flight Lieutenant, who attacked my self esteem by denying me any form of base routine or relative autonomy. It resulted in a psychological battle in which two other people in my work area got caught in the cross fire, and as a consequence there was a drop in morale in the work area. And guess who got the blame! ME! That bully gave my condition no respect at all, and not surprisingly my work performance and general behaviour wasn't up to scratch. That's what led to a Commonwealth Medical Officer (CMO) ruling me medically unfit for appointment with the public service - a precedent setting decision.
We should be a tolerant society, and yet I'm being kept out for the sake of cost effectiveness and efficiency, which is the reason for the two inherent requirements. And it doesn't help when I have that CMO saying that I'm medically unfit for work - and the reasons behind that decision (AS) have not changed since.
So you say that this is discrimination? I agree! But due to an apparent precedent set by a previous case, it's acceptable to set any inherent requirement that an employer may want. And then they can claim unjustifiable hardship to duck the law if those requirements have to be changed to fit someone like myself into the work place. So in law, there's nothing I can do about it! The battle does go on though and I am hoping that the Federal Government can start an enquiry into the effects of AS on adults in Australia by the end of 2007.
Add to that more practical problems, like not having a driver's license, and having to avoid regular public contact because my social skills are not up to it (see other parts). Shift work is out because it's impossible to set a routine with it. Ditto self-employment.
I know about shift work because of another employer that didn't care, Australia Post. I worked as a mail officer there from 1985 to 1991 in four different locations. It was a six and a half year nightmare, especially the first two and a half years. Unfortunately at the time I didn't know what was wrong with me, even though I knew something wasn't right. Nevertheless, management treated me with no respect, and insisted that I alter my behaviour. Despite not knowing what was wrong with me, I knew I couldn't even though I tried, and I needed protection from the abuse that I was getting from fellow staff. Management did nothing, and because I couldn't prove anything, again the law was against me. There was no Disability Discrimination law in 1991 (it was introduced in 1992), and I failed in my compensation claim, being accused of wilful misconduct. I can knock that accusation back now, but the Federal Court opted to ignore the new information and backed the previous decision in rejecting an application for an extension of time to hear another case because of it!
The government needs a kick in the pants when it comes to having a heart. I asked six specific questions to the Minister for Defence, and I was told that answering those questions would be useless! HA! And it goes beyond that Department! Even the Minister for Employment won't answer a simple question, "Am I unemployable as far as the government is concerned or not?" even after being told that if I don't get an answer by a certain time, I'll assume the answer is yes. And my local member at the time was no help as well!
Even the Human Rights and Equal Opportunity Commission are a pain in the neck. I can't make a complaint unless I have a specific employer to complain about! Talk about not protecting my rights! They have however done a report on the employment of disabled people - an enquiry that I participated in.
So what do I do in the meantime? Well, I won't become a vegetable! That's what the rest of this Wiki is about. You'll already know from the main page that my top interest is Football. I can umpire in any of three capacities, I can commentate, video matches, and that's aside from my project, which is located on the football section. You would also have noticed on the main page that I also like Pro Wrestling, Rail Travel, "Doctor Who", "Star Wars", "MASH", and I take a strong interest in Politics. Add to that my interest in music (I have a keyboard), and a general interest in computers.
If you want to know more about my interests, contact me through the Contact Page. One thing I won't do though is go into my personal life. I'll keep updating the general situation as often as I can on my updates page.
As a child growing up
Referring to the features that I quoted on the front page (The Condition Itself), all of them applied to me at school - with a single exception. Science in general was not a strong subject of mine, except for chemistry, even though I enjoyed a lot of other aspects. Well, except when one of my science teachers took apart a rat. I didn't want anything to do with that! And the time another left the smell of ammonia in our class room to prove a point about our sense of smell!
Knowledge is an AS child's best friend, and lack of it is the child's worst enemy in my view. Without the knowledge it is easy to upset an AS child. Or their parents as mine found out. I was having real problems with a teacher at primary school. My parents tried to correct it, only to have the school's principal accuse them of being bad parents, because I was running away from school to escape this teacher. I didn't know at the time that my parents were trying to protect me so I blamed them for the situation as well. My parents changed my school at the end of the first term, for which I was grateful but that damage was already done. Knowing about AS in 1974 may have made a difference - although probably not with that moron! I found out more recently that the principal got into serious trouble with the Education Department over his handling of the situation, and the Department approved of my change of school for that reason.
One thing that an AS child should NOT do is try to involve other children in their fantasy world as an attempt to socialise. I made that error when I started high school, and it should be discouraged. All it does is increase the other children's teasing focus, even though it may not show instantly. With teachers it's not so bad, especially if they are informed about the child's condition. The teacher is in a position to encourage the child to focus the fantasy world toward their work if it is appropriate. A great example in my case was my attempt to write music of my own. My music teacher encouraged this as far as she could, but my perseverance towards other areas got in the way there, and my hatred of classical music didn't help. The teacher can also try to educate the child about their problem and adapting it to the subject. Every little positive helps.
Whilst the problem that I had did not have a name when I started high school, I had a terrific teacher in Integrated Studies (a class which combined English, Geography and History). I had a developing knack for writing stories, and he actually marked it when I showed it to him, even though I have no doubt that the mark didn't count in my official school grading for that subject, and quite rightly. I also had a very good maths teacher, although I got very cocky with my ability with numbers. That's another warning for AS children and their parents. Never let the child get too confident in their strengths. I excelled in simple maths but I had a habit of making careless mistakes - resulting in straight B's instead of straight A's. When things started getting harder, I fell behind.
That cockiness also resulted in me not doing my maths homework. That spread to other subjects, especially the ones that I wasn't interested in, like languages for example (and having a teacher who could hardly speak English didn't help there at one stage!). It also affected physical education, art (except when my imagination was called on), metalwork, woodwork, needlework and home economics. The parents and the school should look at career guidance for the child as early as possible, and encourage that line as early as practical. One can't wait until Year 9 - in my experience that's too late (and it's a contributor to the Action Party Education policy - see that part of the website). It may be necessary to tutor the child away from the school environment, which would have been a good idea for me except that my parents couldn't afford it.
I believe that I was subconsciously aware of my clumsiness and that led to a fear of being hurt. That affected my participation in physical education, especially gymnastics. It would be interesting to see if this fear is a common trait in AS children and indeed adults. I was also aware of a need to "get it right" (be perfect), and not be able to cope with imperfection. That affected me in the wood, metal and needle areas, although I came up with three terrific pieces of work, two of which I unfortunately don't have now. A knife in metalwork, which I accidentally left at school and never collected, and a red and black checked shirt in needlework, which I wore just once, to my grandparents ruby anniversary surprise party about three years after I made it. The third was a wooden plate, which I gave to my grandparents at Christmas the same year I made it. I think they still have it, and I last saw it only a few years ago.
It is largely the child's decision if they wish to continue school. It would depend on how much of an effect the child's fantasy world is having on their studies. The amount of time required for study in Year 11 and Year 12 is such that the child's time in their fantasy world is limited. And there is no doubt that the child would hate that. I certainly did. Whilst I felt that I had no choice in attending school at the time, when I was home I was far more comfortable in my fantasy world, because there lay my only real friends. That's a perspective that all parents with an AS child should note. Whilst I don't advocate the parents actually getting involved, a few suggestions in timing could help. The child must recognise the real world as soon as possible because whether they like it or not, it's there, and they are in it and must adapt to survive. I left school because I had run out of patience when it came to the teasing and bullying, and I'd had enough. I bear no grudges against the Education Department or the now defunct Donvale High School. They did all they could in the end and things could have been a lot worse than they were.
Generally in adolescence, the rule is for parents to become the growing adult's friend, rather than a parent. That goes for every parent in my opinion, not just those with AS children. In the case of the latter it is crucial. The trouble is that the parents have to be careful that they don't encroach on the child's time in their fantasy world. My parents did that at times and the result was a tendency to hate long conversations at the time. That may also be the result for other AS children.
As an adult
Adaptation to the adult world needs to be as quick as possible. Again, knowledge is a friend, lack of it is an enemy, and adaptation can only be successful with knowledge. Without adaptation, the AS adult would have extreme difficulty in getting a job - as I alluded to above. The biggest problem in today's society is the demand for interpersonal skills. There is no opportunity for an AS child to practice this at school, and that mitigates against them. How to adapt it successfully is something that I certainly can't see from my perspective. But then my view is clouded by two bad work experiences, which undoubtedly multiplied the environmental effects of my school experience. I can safely say the damage was as much as five times what school did to me, probably more. I can only discuss how I have coped with each of the features I described earlier.
1. Excellent rote memory: This needs no adaptation, and can be an immense advantage. But there is a frustrating side effect in my case, and that is a spasmodic short-term memory, especially when I have a lot on my mind. That's when to write things down, rather than try to remember them, and that does help.
2. Ability to absorb facts easily: This is another area that needs no adaptation, and is a big positive. But be careful. I have had to put up with people who don't believe that I have all the facts, just because I haven't been in the particular area for long. That leads to disrespect that can only be corrected with knowledge of the condition. Uncorrected, it results in criticism that an AS adult would have trouble coping with.
3. High standard of maths (and science): I put science in brackets because it was an exception in my case. Keep the practice up, even in the fantasy world. I did, although I have a habit today of mixing up my times tables with Football scores! Laughable, but a nuisance at times, and occasionally embarrassing! Generally though it is an area that needs no adaptation, and is another positive.
4. Inability to cope with criticism or imperfection: This is a tough one. If the child likes sport, and involves it in either their fantasy world or their fad/obsession (or both), I would recommend becoming an umpire or referee of that sport. It gave me an individual presence in a team sport environment, and a sense of control. I have also persevered, out of a love of the game (in my case, Football as previously mentioned), and that should also be encouraged. A good instructor or advisor will help, and I have generally been lucky there. It teaches you to ignore criticism as you'll get heaps of it from the sidelines, and the rewards are there for perfection, or as close to it as you can get. You'll develop a thick skin to help protect you from any other abuse or child like teasing that you may get in adult life in general. And that will happen. It's not a perfect method, but it helped me.
5. Withdrawal into isolated activities (as a result of school yard teasing): The only problem that may arise here is pressure from adult social environments for the AS adult to join in. Although the general rule is to get involved, it is not a good idea for an AS adult to do so. I have told people in the past that I don't have time, but I don't go into details as to why. And any queries were answered in the form of "personal requirements" or "commitments". Some may not accept that, and it is a good idea to attend some social functions, especially in areas that appear friendly. But don't mix. Just don't get too involved in anything. My social activity is limited to football functions and presentations. And I won't be pushed. I've again been lucky in that area. If an AS adult is pushed too far, I would get out of there. It's a health hazard.
6. Unusual gait or stance with a tendency to be clumsy: This is very hard because the unusual stance can create a problem. In my case there were some workers who thought I was homosexual, presumably because of my stance. That's the lack of knowledge problem again, and it can be a big issue for a heterosexual, especially on top of the lack of social activity. One should seek assistance to help strengthen their sexual identity. I had to pursue my own assistance for reasons that I won't go into, and that was trying out a brothel. It worked for me, but it's not a method that I recommend if an alternative is available. And it's definitely not on if it's totally illegal to run a brothel in your area. The clumsiness can only be conquered with concentration. I mentioned the fear of being hurt and that could also be a problem in that you are looked down on as a coward. I have learned (as hard as it is) to take that as a compliment, because that is a fair description. And besides, it's also possible that the person calling you a coward is discriminating against AS. So the response, "Coming from you, that's a compliment" (or words to that effect) is appropriate.
7. A presentation that is seen as odd or eccentric: In my case, I have also learnt to take being referred to as eccentric as a compliment, because that is also a fair description. Learning to accept yourself as who you are is a great help here, as it would be for cowardice, and that is something that goes for anyone, AS adult or otherwise. I understand that Albert Einstein had AS. I don't know whether or not that's true, but given his gift with mathematics as well as his reputation for being an eccentric it makes sense. A lot of the great inventors had a touch of eccentricity about them - so it's hardly a bad thing!
8. Appearance of good language skills but limited content: For me this shows itself in knowing what I want to say, but not getting the right word out, and a tendency to resort to slang terms that no one understands. It's a comprehension problem in a way - especially in a social environment. This can only improve with experience, and the rote memory can help here. Don't rush it. And again, knowledge helps. It also doesn't help when you tell someone that you have a condition, and they don't believe you because of the "appearance" of good skills. Face value counts for heaps in today's society. In this sense that is a pesky problem.
9. Poor social understanding: This cannot be fixed in my experience. You can only do the best that you can, and try to get the other person to accept you as you are.
10. Loud voice/hyper verbal: This can be controlled, but for me it's only if I'm in control of the situation. When I'm angry or frustrated (and also excited), this becomes much harder to control. I have tried to adapt this tendency with my umpiring, and being hyper verbal - wanting to talk heaps - actually helps as you are letting everyone know what's going on. It's my style although it's probably more suited to junior football than it is to open age. It also suits commentating, where going "troppo" seeing a great mark or goal scored is more acceptable. The same goes for wrestling commentary. In the work place this can be a big problem however, especially in a small environment like an office. In my case that is unfortunate because all the other aspects of AS suit an office environment better than anywhere else.
11. Live in a fantasy world: I've adapted this by linking my fantasy world to the real world in as many ways as I can realistically. It would take too long to go into details as to how I've done it, without actually describing my fantasy world (that would take ages). The only thing that has to be done is keep it at home, and if it has to go elsewhere, give it a real application if you can. Three examples of my fantasy world are located in the Football section, the Wrestling section and the Doctor Who sections respectively. This website is a way of making the link between my fantasy world and the real one.
12. Tendency to be disorganised: This can creep up on you, and is very frustrating. This is one feature that I've always tried to fight, as being disorganised clashes with being perfect, and interferes with one's routine or structure. I've done reasonably well, but I still have a long way to go. Even as I update this, I have a messy room surrounding me!
13. Tendency to be obstinate, callous, vindictive or insensitive: In the case of obstinacy, I've learnt to try and be open if that is the way I am treated. To treat a person the way they treat you is a good general rule but it doesn't always work as the lack of social skills can lead to some poor reading of behaviour. If the other person is stubborn, return it if they won't discuss the problem. That's the way I work. The others all go together, and you can be all of those things, provided you have a good reason. I believe the time to do so is when you are clearly being disrespected, and it is having an effect on an aspect of your life that you consider sacred, especially work, your fantasy world or your fad/obsession. Otherwise you can think it, and maybe write things about it for yourself, as I have done. I have three hate letters on my computer hard drive. But I won't be sending them. It is also helpful when it comes to fighting against discrimination, which every AS adult will have to do at some time.
14. Obsessional questioning: If the person being questioned doesn't know about your condition this can be a big problem. Make sure that you tell the person you are questioning that you don't understand fully, and they are not making themselves clear. They have the problem otherwise. The sooner they know about AS the better. (Note - This is why I hated the Flight Lieutenant with the Defence Department. She knew about AS, but she took my questioning as arguing, a major error displaying her ignorance.) Checking statements are also applicable here - something that AS also shares with Autism.
15. Restlessness: This can be dangerous in the work place. One must dedicate themselves to the job otherwise they can get into trouble. It is also a problem if there is no routine about the job, as I have found. That is a responsibility of the employer in my view. You can only do so much. And distractions don't help. That really affects me badly at home, with housework and even down to concentrating on getting this website up to date - in all aspects! AS adults hate boredom.
16. Repetitive or a strong sense of perseverance: This can be a positive, provided again that there is a routine. The best sort of perseverance is perfecting a routine that makes everyone happy, if you get the chance! (That's a remark based on personal experience. Guess where from!)
17. Fads/Obsessions: There is no real reason why this can't fit in somewhere in an AS adult's life. And this is essential to one who cannot get a job, as it appears in my case.
The six main points
Dr. Tony Attwood is one the foremost authorities on AS in the world, and certainly the foremost in Australia where he resides. He identifies six main points in the make up of an AS person in his book - "Aspergers Syndrome - A Guide for Parents and Professionals". And following is the areas that have affected me, although there are other areas as well which should be checked by getting the book - which I strongly recommend.
1. Social Behaviour
Dr. Attwood refers to five areas of non-verbal communication that have affected me;
* Limited use of gestures - This is something that has evolved over the years but it is still limited to gestures like pointing (not always at the person being spoken to) and folding arms.
* Clumsy/Gauche body language - Gauche is a word that psychiatrist Dr. Norman Rose used in a report he wrote on me in 1994, as well as his 1990 report done as a part of my legal battle with Australia Post.
* Limited facial expression - I have never really noticed a problem here specifically, except in relation to point 5 below.
* Inappropriate Expression - This is an extension of the limited use of gestures in point 1 above.
* Peculiar/Stiff Gaze - As Aspies tend to not really wish to communicate normally, this is the problem that results.
There are unwritten rules to social conduct in general, which Aspies struggle to understand due to the poor social instinct. Eye contact is also an issue, and this is something that I have had to work on with my umpiring football with a satisfactory level of success. Understanding and expressing emotions also tends to be an issue, as they need to be learnt logically rather than instinctively. This is where one's upbringing is a crucial factor.
2. Language
Dr. Attwood also referred to five areas of concern here;
* Delayed Development - There is a delaying factor in the growth of language but usually one can get by in adulthood, unless the problem is particularly bad.
* Superficially perfect expressive language - Aspies tend to limit expressions to words that they like and find useful. I certainly do this although I try to avoid it. That isn't easy at times though, especially in an ad-hoc situation.
* Formal Pedantic language - This is an extension of point 2. It could be said that I take this sort of line when I am in an "interview" type situation, such as before a committee or in a courtroom or tribunal.
* Odd prosody and peculiar voice characteristics - At one time I was told that when I spoke at length I sounded as though I was about to burst into song!
* Impairments in comprehension, including misinterpretations of literal/implied meanings - This is something that has not been a major problem for me. I do pick up the literal meanings but I am far more likely to take that literal interpretation and turn it into a joke.
There is also the issue of speaking when it's not appropriate. Interrupting is the best example of this - thinking that I can speak when in fact the person speaking hasn't finished yet. This is not an easy situation, especially when I feel that I need to say something instantly when I hear something that I don't like.
3. Interests and Routine
I don't really need to expand on this as I mention these problems at length above in the "As an Adult" section.
4. Motor Clumsiness
The two areas that affect me here are running ungainly and manual dexterity. I had no idea that my running gait was unusual until 1999 when an expert in running who was observing me train and umpire noticed it. I also discovered in 2002 that I have a problem with fluid running into my ankles for the same reason. I obtained inserts for the soles of my footwear but it cost money to do through a podiatrist. Manual dexterity was a problem for me in childhood. I was unable to tie shoelaces until I was about 8 or 9 and I wore clip school shoes until then. I couldn't ride a bicycle until I was nearly a teenager.
5. Cognition
This area is probably the biggest source of angst in society, the way the mind works. The minds of AS people work differently as there are restrictions in the flexible thinking that is based on cognition. It's all based on logic. I have had big problems with this and it has resulted in a lot of arguments on Internet forums, including my own. It is NOT simply a difference of opinion, as some people seem to think. There is also the situation with imagination, mainly surrounding the fantasy world - which I certainly have. It is also this area that causes those who hate AS people to refer to them as "brain damaged".
6. Sensory Sensitivity
This varies from person to person. Of the five senses three give me the most trouble. Taste leads to fussiness over food, preferring the bland and not wanting to try anything new if I can avoid it. Touch affects me in the area of pain, as I am not keen on it and I try to avoid it if possible. That seems hypocritical given my move into the area of Professional Wrestling! Even as a non wrestler! Smell is particularly sensitive for me when someone is smoking, especially where they shouldn't be - like on a train!
One must also take into consideration the sixth sense - instinct, which is the most common area of sensitivity amongst AS people.
Conclusions and Updates
As the condition becomes better known in Australia, hopefully the education and health systems will respond. I know there are other adults with AS in Australia and around the world, and I would like to find them, and exchange letters and e-mails with them, especially if they have interests similar to mine. I would also like to help them more directly if I can, which is the reason why I used to have a group in Yahoo and forums – and now this website.
I also believe my experiences may help develop strategies for parents to handle their AS children. They must try to show the child that they love them, and want to protect them through their school years. The school must assist, and cuts to education, especially in the public Sector, will not help. In fact I call any further cuts in the appropriate areas indirect discrimination. The child needs individual tuition at best, or something like it. Without love, suicidal tendencies are a distinct possibility. That's another area where I have also been lucky, and I have seen at least three AS adults entertain such thoughts.
The bottom line for an AS adult is this; live for yourself, those who you want to help and those who want to help you. And if you are an AS adult, and happen to want to marry, make sure that your prospective spouse understands you and accepts you as you are. If they don't, forget it. There again, I've been lucky.
And I believe that if I am unemployable then there should be support for the fad/obsession that I have, and that goes for anyone in the same situation. |
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