Being Different.

[Mountain Goat]

I am different. I have had a different upbringing. But what if ones differences are such that the enviroment in which one lives is set up in such a way where one may not cope or have the same quality of life to someone who is not so different?
You see the world we live in is set up for Mr and Mrs Average. Mr and Mrs Average generally cope well. They have their ups and downs but they usually ride through them without needing too much help.
Now most people who are different are different by choice either due to a chosen lifestyle or a different upbringing. But what happens if the whole way in which one thinks is different, and how does one know? Because lets face it. As we grow up we learn what is acceptable and what is not. But thinking different, one may be aware of the rules or laws of the land, but the hidden rules to enable one to fit in socially are another thing entirely.

Now thinking in different ways can be an advantage. One is less susceptible to general brainwashing techniques of society so one can notice things that the average person may not. However, the dissadvantages are that because we live in an enviroment designed with average thinking people in mind, someone who thinks in very different ways can be constantly needing to adjust which means they will likely to daily have mental strain and need more time to relax.
If the brain does not have sufficient time to relax, then problems start to occur.

Some of you already know what I am describing here, and I am over simplifying things.

What am I talking about?
Autism.

So why do I write about autism on a model railway site? Well. Do you remember me talking about the advantages of thinking differently? Well... One ability of individuals on the autistic spectrum have (And it is a very wide and broad spectrum) is the ability to hyperfocus on individual subjects. Where one would normally have a hobby, those on the autistic spectrum will take these hobbies to another level. The autistic community describe this as their "Special Interest".
Now you may be surprized to hear that the most popular special interest by far is our hobby of Model Railways.

So does this mean that we all could be on the autistic spectrum? Of course not! Haha! But I will say that you are more likely to have people on the autistic spectrum on this site and others like this then you are on other sites, with the exception of autism sites of course!

I don't know if I am on the spectrum or not. I am on a list to be assessed and I may share my story another time. It is a bit of a long story which started out with trying to get to the bottom of a certain health condition that I have had since a child, where I had for years assumed it to be related to some sort of allergy, only to recently discover that the symptoms seemed somehow related to a description I heard about an autistic meltdown, but not quite the same. To cut a long story short, I had found this out by a link when researching about faceblindness (Which I have) and the lady describing the condition on youtube happened to be autistic, and she said that 60% of people who have faceblindness (Prosopragnosia) are on the autistic spectrum. I had then watched her other videos on youtube and saw some vague connection between my experiences and meltdowns.
So to find out more and ask some questions, I decided to join an autistic site called Wrong Planet.
There some very tallented people gave me links, and one of these links was a list of autistic shutdowns (Known as an inward meltdown. Both are results of a brain overload to the enviroment one is in. It could be too much stress or anxiety, or it could be the individual is hypersensitive in certain ways and the enviroment they find themselves in is too much for ones brain to handle so one either has a meltdown which is a very outward form of having a brainoverload, or ones brain starts to shut down like a computer may shut down into standby mode if it can't cope which is known as a shutdown).
When I read this link about different forms of autistic shutdowns, one paragraph described my symptoms so accurately that I scrolled back to the top of the page to check that I was not the author!
Since then I have discovered a few more traits that I was not aware were autistic traits. I assued they were all part of my unique character which I assumed was caused by my upbringing where I was percieved as being different....
The main readon why this all came to me as such a surprize was that my concept of autism is one that is often portrayed on the television where they always show the most severe cases.
Now like I said. I may or may not be on the autistic spectrum myself. I do have traits, but this does not mean I am classed as being autistic. But my time onthe autistic site has been a real eye opener which has totally changed my perception and understanding of what autism is. There are so many really tallented people on there. Many joined just to ask questions. Others joined because they know they have autism and want to feel they are part of something they can relate to. But regardless of why they joined, I have been amazed and surprized at how many are really tallented with several ending up being successfully wealthy owning and running businesses. One highly intelligent member I had been talking to said something that I could not believe. The person said that they were completely mute. They could not speak!

What causes autism? Basically it is where the brain has connections missing. Nearly all autistic people have been born this way. While the brain is developing, the brain often compensates by overdeveloping another area, hence why autistic people can be narrow minded but can go into extreme detail in the areas they are stronger in. The brain could also make new connections instead and cause someone to be hypersensitive in a certain area. (Which could trigger off a brain overload triggering off a meltdown or a shutdown).
Now the missing connections can show up in many different ways. Like the individual who could not speak. Think of a computer with a circuitboard with a missing connection. One may not know until one day the computer needs to use the connection and it either shuts down, or someone may have wired it wrong and something else takes place instead! (Can cause involuntary movements etc).

How does one know if one is autistic? The short answer to most people is that you dont. You may find yourself struggling in life. Somehow your greatest efforts seem to miss the mark and you may find that you are either a loner and hardly know what socializing is, or you may be always trying to socialize, but somehow you may overdo things somehow and end up in trouble!

I find it such a fascinating subject and I have learnt so much about myself, that it almost does not matter if I am on the spectrum or not. I mean... Just understanding how I think and why has answered a great many questions for me about my past. Why I was often unable to fit in. Why I hated the school halls during lunchtimes if it was raining and just sat or stood in a corner with my hands over my ears...
Why I am a bit of a social recluse. Why I had developed masking as a means to fit in, and when in recent years when I have hit some sort of burnout and so am not able to mask like I used to.... Why I currently face so many problems and I reached the point where I could no longer keep myself in work.
I am not saying I am on the autistic spectrum myself as it depends how many traits I have. But I do know I am different. And being different may not neccessarily be a bad thing!

[keef]

Well done for that post MG. Great read. Progress in many fields of life start from somebody thinking "differently". Cheers to all those that are different.

[Mountain Goat]

It is a bit of a long post, I know. For me, I have been having partial shutdowns and shutdowns since the age of about six or seven. Prior to that age I used to get uncontrollable tempers caused by frustration. My Dad would discipline me, and fair play, I needed it, but then the tempers went, but it all turned inward.
I never knew what these shutdowns were until this May when I finally found out what I was dealing with. I have passed my mid 40's! Think how many doctors visits I have had over the years to try to find out. I think I have been tested for just about everything! (And I hate blood tests because I tend to have a hard time. I have since found out why. I am hypersensitive to the bleach type smells that hospitals have along with the panic of going through all those long corridors and then being stuck in a crowded waiting room for an hour (Anything from 30 minutes to almost two hours wait). So I am on the fringes of a partial shutdown by the time I go in (If I have not slipped into a partial shutdown before this).
I rememer the last but one occasion, I was in hospital for six hours, because while they had me in the chair I totally shut down after they took my blood. Now to me, some of my feelings can get mixed so I can't tell the difference between the shutdown experience and fainting. I only know when I start to recover because after fainting I welcome the attention. I am glad of it. But coming out of a shutdown... Well. Put it this way. The nurse kept asking me questions. "What is today's date? What is your date of birth? What is your name?"
I had to think hard to even remember my name, as my mind was shut down, and because I was trying to think to answer, my mind kept shutting down, as the nurse just didn't give me the chance to recover before asking the standard questions. I had two or three hours of this where every time I started to recover she went into the same proceedure. Inbetween each recovery I kept saying "Don't ask me questions", and eventually she got the message which allowed me to start to recover though I almost recovered and the smell of bleach shut me down again. When I was recovered enough to sit up (No way could I walk), they put me in a hospital chair and took me to A&E and put those monitor things on me and left me to recover. I just was able to leave just after the 6 hour car parking limit (Pay and display. It is now free) had run out, so I had to make a quick exit.
Funnily enough, while in A&E the man who saw me (Doctor?) asked me if I had autism. I said "I don't think so". He said it was not normal for fainting to last long and it was why he asked me.
The next time I had to have a blood test, the doctor said there were apointments available at a drop in centre where they hire a room at a local church to take my blood. When I went in there, I was expecting to be out on the floor and I warned them it might happen, but nothing. I was ok. Walked to the car park. I even was fine to drive off straight away! I was puzzled. I never knew back then that it was shutdowns and I never knew the triggers... Then the last time, I asked my doctor if I could go to the same place I went before instead of the hospital (I believe it was the stand in doctor I asked?) I was told "No. You have to have a dissability to be booked in there", so it was back to the hospital. I was shutting down again... After the blood test, I only just made it off the chair and down those long hospital corridors. I needed the whole width of the corridor to walk in! Once I was outside, I started to recover. I had to lie back in the car for half an hour. So I was only about three hours that time I think!

A full shutdown I am on the floor and my body is limp. I have no control of my body. I am in a vegetable state. My eyesight has turned to black as I get a loud tinitus sound which starts at a lower mid tone which lowers in pitch as my eyesight blackens. My hearing can shut off too but I am not in a state to try to hear over the internal panic I am having and the loud tinitus sound. When I start to recover, my hearing is effected. I can hear every word plainly, but not make sense of what I am hearing. It is as if english is a foreign language, so if people talk to me, I will ask them to say it again and again, but because trying to think will take me back into another shutdown, I often automatically pretend I know what they have said or if they say "Do you understand?" I say yes just to get rid of them so I can avoid another shutdown.
Partial shutdowns vary. I always get the stages of first having a partial shutdown and then slipping into a shutdown if I have not recovered from a partial shutdown.
Partial shutdowns... I can be on the fringes where the first thing that I notice is that things I am doing start to become hard work. My judgement is effected and then my balance as the shutdown deepens. Every movement I make feels like I am wearing a heavy iron suit of armour. I start to make attempts to recover by ceasing what I am doing and going to sit down or preferably lie down somewhere quiet. If I can't remove myself I will start shutting down.
With the help of advice on the autism forum, I tried stimming, and it does delay or prevent me fully shutting down... If I remember to do it, as it is the opposite to how I feel at the time I am in a partial shutdown.
If I am relaxed and doing nothing that requires great strength, I can go for a while in a partial shutdown, and not even get a full shutdown.
I rarely ever get partial shutdowns if driving, and I can go miles while in one and drive ok, as I am very relaxed while driving, but I will look for a suitable place to pull in and take a break as I do not want to risk fully shutting down. Once I have a break and I feel myself pulling out of it, I can carry on with no issues.
The main issues I get are when I am in a work enviroment. The last time I was in work I was in such a mess. I was working through strings of partial shutdowns. I only had short shifts of 4or 5 hours a day and every other day was a day off, but working through strings of partial shutdowns when it is all I can do to stand up... At the end of the shift I am so exhausted it feels like I have runa marathon, and then at night my body is tired, but my mind becomes very active and re-lives the entire day and I only get a few hours sleep. Then the day off is not enough to recover... Then the next working day I am worse, and it all esculates from there.... So I end up in such a mess and I am a nurvous wreck. Externally I must look and act normal as rarely does anyone notice which makes it soo frustrating for me!
Each successive time I took on a temporary part time job I hit burnout, and though I had a good four to six months to recover between jobs, I had not fully recovered from the previous burnout so I ended up burning out again. Each time I sunk lower from the time before.
For the first time in my life I find myself on sickness benefits and I am concerned that I can recover enough because if I have to go through looking for another job and then start to work, I can't see me surviving without a total breakdown. Last time I wrote down all my passwords to all sites I was on as I was in such a mess that I greatly feared that I would lose my memory entirely.
My big problem is, that I keep trying to push through and I won't quit when my body and mind is screaming at me to stop. I am too much of a people pleaser so I end up laboured with all the work... Which does not help as it adds to the stresses I already have. And I have pushed myself and pushed myself over so many years that it has all boomeranged back on my these last few years.
I could easily write a book!

But something I will say through learning about autism from the many people that have it. They have a saying. "If you have met one autistic person, you have met one autistic person". Why? It is a spectrum. Everyone is different. Roughly 40% experience meltdowns. Roughly 40% experience shutdowns. Some who experience shutdowns also experience meltdowns. Others have never had a shutdown or a meltdown and yet are on the autistic spectrum.
There are many who live their lives not knowing they are on the spectrum until things start to fall apart later in life.
There are much higher suicide rates amongst those on the spectrum.
The most difficulties I often hear those with autism have are being missunderstood by those who don't have autism, and don't understand what they are experiencing, and assume they are trying to be awkward, or they have ideas where they try to mould the autistic person to become more like them.
One of the largest problems in the medical field that causes so much stress for autistic people, is programs to teach autistic people to be like everyone else. Now to do this is called masking. You mask your traits or symptoms. This takes a great deal of mental energy to do. For example, when I was in school, and I was either nurvous or concentrating, I would be turning my head to the side slightly (Not looking directly at the teacher) and I would be rapping my fingers on the desk or bouncing a leg up and down. It helped me concentrate or overcome the nurvousness. Now doing these things, makes the teacher assume I am ot concentrating. The teacher would ask me to make eye contact and to stop figiting. However, to do this takes a constant monitering of all my movements every day I was i school, and I would turn my head towards rhe teacher but have to gaze just to rhe left or the right. The teachers who insisted I do this with... In there classes my schoolwork started to deteriate. Now to most school children, they would have no issues looking at the teachers directly, and if they were doing something and were told off they would just stop.
Now I have been masking for many years. Another form of masking is where one learns to react to situations in a manual way. For example, if someone says a joke an autistic person will have learnt to laugh regardless if she or he got the joke or not. They are masking to fit in because they naturally react in different ways to various social situations to other people.

[IanS]

Long posts - but a very interesting read and take on Autism.

I have a friend who I will be showing this too, his wife keeps saying he is on the autism spectrum (they were both teachers) and I have a cousin whose grandchild (aged 9) is constantly undergoing tests at present to determine the level of autism.

[Mountain Goat]

On the autism site, I heard a rather interesting story of a guy who was a psycologist. He had assessed countless people, but when he touched into middle age he had a breakdown. He was assessed himself and he was found to be on the autistic spectrum and he didn't know.
It is surprizing how many people get diagnosed later in life after they hit a crisis in their lives. Why does this happen?
Someone who is unknowingly on the spectrum may not know, and may not show signs because they have developed ways to mask their symptoms. Most (Especially if they are natural introverts) would have a hard time in school, but may not know why. Now while ones mind is young, masking is easier to maintain. As one gets older, masking starts to take its toll as one starts to hit burnout. It is important that if one hits burnout, that it is taken seriously as if one ignores mental burnout, one can end up having a mental breakdown.

Now there is something that is a common trait of autism, though not everyone who gets this is on the autism spectrum, and not everyone who is classed as autistic has this trait, and that is prosopragnosia. In other words faceblindness.
Now certain types of faces I have issues with, but others I can pick out and not forget them. I can't tell when I get it because it is only when straners come to me and tell me who they are, that I realize I have not recognized them.
While we could say that at times we all may not recognize the odd individual that one has not seen for many years... But this goes slightly beyond that for me.
Let me give an example. I was on my lunchbreak so I walked into my local town to go to the bank. I turned the corner where the bank was at the other end of the street, and I saw a lady and a little boy. The little boy was tugging at his mothers hand and he seemed to know me. Somehow I felt I knew them, so I said "Hello", and the lady said "Hello" and we both carried on walking. The little boy kept looking back, but eventually he carried on walking with the lady.
I was puzzled. Who were they? I started to go through all the people I could remember that I knew in my mind. I continued to do this all the way to the bank.
I went in the bank and joined the long queue. I was still trying to remember who it was. The queue had gone forward slightly and then I recalled where I saw them before. It was my mother and my youngest brother (He is 18 years younger). I lived with them. I saw them daily!
My mother was also puzzled as she knew that somehow she knew me as well but as she also has faceblindness, she couldn't think who I was.

Due to prosopragnosia, when I was a child I was very clingy to my parents, especially to my Mum. I would absolutely panic if we were in a shop and someone walked inbetween me and my Mum. Why? Well. Most children could just look for their parents if they parted with them in the shop, but for me? If I lost touch with my mother, I would struggle to find her again due to the faceblindness. While in school, I was very very quiet and withdrawn, especially in the first few years. Playtimes I would stand in the corner of the yard and not move. I would just watch everyone. It took a few years for me to connect with other classmates. It did not exactly come naturally.