Does it sound like i may have aspergers?

[zizmarley]

Hi im new to the forum , so if this is the wrong section im really sorry and please put it into the right board section

First of all i will say i suffer from cfs/me which can effect me cognitively so sometimes my sentences may make little sense, please let me know if yu cant understand, also the odd letter will be missing because it also effects my muscles and i have troubles typing on a laptop.

 

On topic, im 20 and am begining to realise i think i suffer from aspergers syndrome. Ive always suffered since i was yung socially, i could never really get most standard social standards and norms. ive never liked people getting in my personal space. Its not a huge thing for me, but in shops i can get very anxioous when people stand too close to me in a queue. I dont like hugging people and only hug family members and very close friends because its expected of me, i hate it and pull away very quickly.

When Having conversations abut things i dont personally care abut i sort of drift away or try and steer the conversation to something i can talk about. I have what i call standard responses to people when they talk about things and im not sure where the conversation is going. For example: "oh dear" "thats not good" "oh right" "yeah maybe" and then i pretty much kill converation withut meaning to by not contributing effectively :/

I hate meeting new people, i dont know what to say, what im suppossed to say, how i should act. I cant make eye contact so it unnerves me, id rather look at the floor. When people try and force eye contact i get very distressed, i think people think im being rude by not giving eye contact but im not.

I really cant express emotions very well, i get obvious emotions that other people express. But myself i cant, if im upset i dont tell anyone.I hate new places, and dont dont like new situations.

I was forever falling out with friends at school because i was honest about my thoughts on certain subjects and would talk about my favurite things for ages and they get bored. I hate imagination games when i was younger in playgruonds and remember just seeing hoow high i could count in one breaktime rather than playing with other kids. I hated working with other people for classwork or doing time wasting creative tasks just so the teacher could mark work. I have no creativity at all so hated art. drama stressed me out a huge amount as well.

I much prefer my pets to people, alot easier to get along with and understand!

I also suffer quite alot from anxiety.

 

 

Is this sounding like aspergers syndrome? I know and understand no one can diagnose without meeting me and is something only a dr can do, but i get paranoid my dr thinks im wasting her time with my physical health problem so i try and avoid drs at all costs. Should i be seeing a dr? How do i tell a dr ?

Is a diagnoses actually necessary? I hate waiting in my doctors waiting room, there are too many people and my doctor is always late and then rushes my appointment.

So does what ive typed sound like a person with aspergers syndrome?

Im sorry i seem to have rambled alot

[LancsLad]

Hi Zizmarley and welcome to the forum, as you said I can not easily say if this does or does not sound like Asperger's.

 

As someone with a diagnosis recieved as an adult and having met a few individuals with a diagnosis here are my thoughts for what they are worth. I view my own condition as a series of elements or dots on a scatter diagram, some people would say the backround picture of that diagram is the autistic spectrum. Some of those dots might be related to for example to general developmental difficulties others are quite specific such as high sensitivity to certain things or face blindness and not being able to recognise my own son in a group of children for example. At a point in my life someone decided to place a 'label' on such traits and if they are there in sufficient numbers attribute them to a developmental condition and that is called Asperger's, High Functioning Autism whatever you want to ascribe it to, to me they are simple descriptions of elemnts in my own life. And that's how I deal with them, wearing T-shirt with "I have Asperger's" doesnt really help day to day.

 

I personally feel Asperger's is a trendy thing at the moment and is in the public eye, that may be a good thing or a bad thing. What it does mean is that there is a cliched viewpoint out there in the public domain and as such you are not the first or last person to come to the forum with similar ideas and questions about their own life, I understand why this is the case. A lot of such individuals approach the condition from this cliched perspective as they have limited information, why should it be any different?

 

What I will say therefore Zizmarley what I will say is if these things are causing a little concern but nothing more ask yourself why would you want to go out and try and seek a label? If these things are really serious issues then the thing to do is do some serious research into the condition. There are now some very good books out there which will give balanced and educated perspective on what Asperger's is about. I would personally recomend 'The Complete Guide to Asperger's Syndrome' by Tony Attwood.

 

The reality is that getting a diagnosis in my and many others opinion as an adult is not easy and there is very little in the way of support available throughout this process and importantly afterwards. Whilst I view my own condition in mainly a positive way many do not. As such it is something you need to think about carefully. I myself managed to get about 40 years into life before things started to break down in a really bad way. From such a position it has been important for me to gain a good understanding of my personal context in moving forwards. At the age of 20 would recieving this label have made a difference in my life I am not to sure if anything I think I would have felt very negative about it at the time.

 

These are personal views. In all honesty your post sounds cliched if anything and the people I have met with Asperger's are anything but alike, nor do they all follow the patterns you describe. This does not mean you do not have the condition far from it but there is so much more to it that social and anxiety issues. My advice would be in a way to spend time and write down all the elements you think might be reasonably unique in your own life far away from any bias. Then research into the condition and see what your conclusions are then. A diagnosis for AS is about ticking a number of boxes. It does not mean we have to be able to tick every one rather there needs to be enough that a pattern emerges for an objective view to be taken. There is not enough in your post to draw such a conclusion though I am not dismissing it as a potential outcome in the future if it would be in your best interests and that is the bigger question. Why would you want to find an answer to this question in the first place, only you will know that.

 

Hope this makes a bit of sense your post did, so don't worry about it in future.

 

Best Wishes.

[zizmarley]

Thankyou for your reply.

Your are probably right my post sounds cliched, i tried not to sound like that and just be honest but i do have troubles getting my thougts out properly (if that makes any sense lol) so it was easier to stick to the problems i have that are probably a bit more commonly associated with the condition. think your probably right in that a diagnoses of anything along these lines would be difficult as an adult. I know it was hard enugh for a young (about 8 years old) family member to get a diagnosis of autism. I will read that book you suggested as i do like to have a better understanding of alot of things and this will help.

I think your right that aspergers is a "trendy" thing at the minute in the media and hope ive not come across like i want a diagnosis of it or anything like that. I think i need to really think about if a diagnoses of conditions along this line, if i do have a cndition that is similar, will be helpful to me or not.

Thankyou again for your reply

[JeanneA]

Hi Ziz welcome to the forum. It sound very likely that you are aspergers. You really do need to see a dr. can you write things and read them to explain how you feel etc? it is just a thought as it may be easier then to go into the doctors surgery all prepared. I'm sure the doctor would refer you onto a professional which could lead to you getting a diagnosis of aspergers. Good luck and do let us know how you get on.

[LancsLad]

To Zizmarley and others who read this post.

I want to be clear that in expressing my own thoughts I am not being critical of what individuals say when they come to the forum exploring for themselves and asking for help in exploring elements related to the question do I have Asperger's or not? Recently Darkshine in another post brought home very strongly to me how 'reference points' can be highly influential in our lives. A lot of 'expert' opinion will say that the autistic spectrum is a very broad landscape and as such allows a great variety of individuals to comfortably sit within its features. Asperger's is one area of this landscape but it is still a broad and open expanse. This concept has been brought home to me a lot in meeting and talking with other adults with AS. Whilst there are overlapping similarities in places there is also great differences and diversity.

Asperger's is a growth area in our society at present a lot of it driven in response to parents and schools seeking responses for children. A lot of this procedural response is about matching individuals to criteria in professional diagnostic settings often significantly removed from real world contexts. In my opinion this approach based on economic and time considerations tends to compress concepts into a view of Asperger's which whilst not wrong is limited. This starts to create a reference point of 'this is what Asperger's is all about'.

 

As children's personalities develop and they have more life experiences and environmental elements start to come more and more into play then their expression of autistic traits in their own lives will start to expand. Periods in a life such as puberty which is difficult for many in our society will add new elements into the mix and as such new behaviours and traits might start to emerge as a result. I think if you took the teenage Asperger's population and created a set of reference points then there would be of course similar elements as in say a primary age profile but the overall picture will be getting more complex and associated elements such as anxiety, depression, self harm might be coming more and more into play for some individuals.

 

 

The point I am trying to draw out here is that if we take a blinkered view, and any diagnostic criteria working off a list by its nature is blinkered, we have to accept that Asperger's as a developmental condition requires us to modify our reference points if we track our own child for example through time or if we want to take a broad and balanced perspective of the condition which incorporates adults, there are people in their 90's out there with AS, I might be one of them one day.

 

 

We have had a large demand over recent years for positive diagnosis of children and teenagers which has placed many on the spectrum. This demand is on the whole based around educational contexts which has acted as a catalytic force. We have yet to see what the effect will be on this population as they move into adult life en mass and whether this diagnostic movement will prove to be a good or bad thing 20 years down the line for example, the jury is out on that one. Because of this increase in individuals on the spectrum media has picked up on this and we are see more and more in papers, lifestyle magazines and on TV and radio about autism and especially Asperger's. In my view a lot of this coverage is based on quite narrow reference points and as such is generating what I would describe as cultural clichés around the condition.

 

 

The concept of a cliché is something which is unavoidable in society this happens in almost every element of life. To give an overt example, a few young people might develop an aesthetic look on the street based on clothes, music taste, dance preference etc... this becomes an identifiable sub culture with a lot of energy to it and as such draws media attention. At this point whatever is extracted by the media becomes a reference point and is portrayed as such and a cultural fashion starts with masses in society aligning themselves with those narrow reference points, for example 'I am a Punk Rocker'. For the majority it does not really matter if this new cultural concept is a full and accurate reflection of the original sub culture, what is important is that it serves a purpose. To take the analogy further in exploring ideas why do so many cultural clichés emerge from teenage cultures? The answer to this is that teenagers are very good at emotively expressing their emotions in very clear ways and as such give off strong messages to others who are trying to read them as a means of generating identifiable concepts. Individuals in their 80's are just as capable in theory of generating new sub cultural concepts in fashion and music for example but the energy is not there, and whilst this might happen as to what's in and not in this age group media has no real interest in this age category though they are significant in numbers.

 

 

The point I am making here is twofold. Firstly media will focus on individuals whose condition has already been compressed in definition terms through a diagnostic process, their question being 'have you got Asperger's or not' before we run the article. The next point is their emphasis will often be on teenagers as a means of providing a strong picture of the sub culture. To readers, viewers or listeners they then have to sell their content through association and that is all about building a picture of what is Asperger's in a cultural psyche and to do this they use the clichés generated from existing reference points.

 

 

My feeling is that the resultant cliché and as such cultural view is not incorrect but very limited. A lot of this is teenage generated and as such my own feeling is that within this cultural view there is a massive over emphasis on 'teenage' elements such as social interaction. There is a reason to this which I hope I have explained and that is that this area is important to teenagers who have a culture dominated on the whole about trying to fit in with their peers and develop associations.

 

 

I ask a simple question, if the initial reference points were adults aged 20-25 in this cultural process would we be drawing similar conclusions about the condition I think not is the answer.

 

 

At this age as a developmental condition, individuals would have developed far more complex and refined coping strategies to many aspects of their lives. They would have also entered into a phase of life where rather than being more acceptable individuality is a desired concept for many sections of society. There would however be new issues coming into the equation. The formation of sustainable relationships and finding appropriate places in the world of work being two such areas.

 

 

As our lives spread out and as a result so do the associated elements of the condition spread on the spectrum it becomes harder and harder to define what is Asperger's. The diagnostic criteria has to change, I know this from personal experience. At this point it is harder to generate clichés which are correct and as a result there is a tendency for adults asking questions to try and push their own lives into a set of clichés which might not be even age appropriate. This might not be an issue if the condition were fixed but being developmental the goal posts are constantly moving. There is a real danger here of someone who has been able to move out of their teenage phase, albeit delayed, trying to move backwards in wanting to align to a set of clichés simply to fit a list of criteria.

 

As someone who received a diagnosis aged 44 I can honestly say I do not feel part of the current wave. I have been described by a well experienced and respected professional in the Asperger's field as having a lot of strong autistic elements, yet I do not feel any attachment to the Aspie clichés which are now emerging within our culture. I can see many elements which relate to my teenage years but not as a 46 year old adult, I have changed in so many ways over the years. Has Asperger's become less significant in my life, no it has not, the issues are different and in many ways more complex, but by seeing the condition as a broad set of reference points I have a pretty clear picture of how I can fit and operate in the landscape.

 

 

Being in this position does leave me with a number of real concerns. The first is given the perception of parental choice in our education system more and more children will be given a diagnosis as it has an influence within this school based environment, we need to appreciate what that might mean for an individual some way down the line in other environments, whilst we might for example choose not to disclose our condition to a future employer it is difficult not to disclose 'The LancsLad School for Asperger's' on a CV. Another concern is that by introducing labels as reference points we start to stop looking at people as individuals and being able to separate things such as the condition from other elements such as personality and we introduce on others and into ourselves expectations. Even as a middle aged adult I can feel this draw, the number of individuals with AS in productive work is very limited, does this mean this is what life will be like for me or can I break through the cultural stereotype, labels can be difficult.

 

I think it is also natural for many parents to want to feel part of a bigger picture, a lot of this is down to their personality type. As such if my kid had AS it would make me feel better if there are lots of other kids out there who likewise share their condition. This is an emotionally driven force and as such very potent. When you couple this up with an associated machine of professionals many focused on Asperger's what do you create. If we are not careful we create a sausage machine. The last element is who is going to provide the energy to run this machine. At present this energy or finance is coming from the education sector and is therefore age dependent as a result there is a potential element coming into play of creating the 'AS sausage' before the individual leaves the boundaries of the available finance which provides the energy supply to the system.

 

I make this point specifically to parents of children and teenagers who have received a diagnosis for them whilst in their school years. What you have experienced in your own life situations bears no resemblance whatsoever as to what it is like to get a diagnosis as an adult! I do not want to offend anyone but simply give my experience which is backed up by many adults on this forum.

 

 

I think there is a big mismatch here and that is parents who believe that a diagnosis is a good thing for their child, mainly based on the fact that it opened up a lot of doors for them mainly in educational contexts, and as such it must be a good thing for an adult too! In reality the diagnosis procedure is very difficult to engage into, there is very little if any support because there is no financial funding streams wrapped around it. Post diagnosis you will simply be at the beck and call of local mental health services which in the adult sector can be at best fragmented at worst totally misinformed and destructive.

 

 

I think it is important that we listen to and respect the views of adults who have been through this process, and many of them are available on this forum. I on the whole see my diagnosis as a positive thing and it has helped me sort out some serious issues in my life but it has not been easy and finding support has been very difficult. The emotional stresses of the process nearly cost me a masters degree, I could easily see it costing others something such as a job or a relationship. I have managed to come through this process reasonably intact there are others I have witnessed on this forum who at the moment I could not say the same thing about, my thoughts are with them and I really hope they can see things in a more positive light given time. As an adult I think timing is everything in these things and it is so important to trust our own instincts on this.

 

 

I also believe it is really important to paint an accurate picture of what the process is like and what support might be available otherwise we are selling a very false concept to people and that is simply not fair.

 

 

In conclusion as individuals we are all very different we all have unique traits. If we choose to do so we might find comfort in looking for patterns in those traits and in finding patterns we might bring some new meaning into our lives. Once there those meanings will remain be they positive or negative. In the case of Asperger's this will currently include a meaning that this is a lifelong condition and there is no cure, for some that will be very difficult to take. We have yet to see how the Aspie cultural phenomenon may develop in society. We may become highly sought after individuals as other choose to utilise out talents and abilities, we might become a long forgotten fashionable trend, time will tell. Some adults who might suspect they share these traits may choose to join the phenomenon in the near future, others may wait on the sidelines until the cultural picture becomes a bit clearer as it inevitably will as the volume of Aspies generated in the past few years move into adult life. If I had some advice based on experience it would be that we should be prepared to acknowledge and potentially incorporate new reference points given a 'developmental' condition changes. We should be wary of falling back on the inevitable clichés which will be in society as individuals closely connected to the condition be it as holding a diagnosis, as parents or as professionals we should know better than that and treat individuals as such, individuals. And finally we should be respectful of others but in doing so be open and honest about our own experiences so that we can build a better, more diverse and accurate picture of what the autistic spectrum is all about.

 

 

Just a few thoughts which have built up over the past few weeks.

 

 

Best wishes.

[darkshine]

Interesting thoughts - and based on them I have the following thoughts and questions

 

What will happen to these kids who have been given so much support through their educational years only to find that the adult level of support doesn't match - will they feel dropped by the system they have relied on for a decade or more?

 

And although I am aware that there is a child dx and an adult dx - if the condition is development (which we believe to be so) then why don't the diagnostic criteria account for that when testing people of different ages - I've already noticed that the people who are a decade older than me are in different places, as I am to the people a decade younger than me - some things stay similar but others are drastically different.

 

Also if the criteria changed too much or became too broad for different people then are they really testing the same thing any more?!?!

 

Just wanted to add that

[LancsLad]

Some very good points Darkshine. I have been aware that there have been a number of views of this post which has been hijacked in some ways by myself, and to be honest I was expecting a lot more comment much of it critical, but that has not happened.

 

I think we share a very big concern about what will happen in the future to this diagnosed generation and generations to come. In answering your points I simply do not believe the system is anything like approaching sustainability and as such it is deeply flawed.

 

The best way I can explain my views is by using an example in my own life and in my own area of expertise.

 

About 12 years ago I moved into my existing house which was a new build and as such i was presented with a large expanse of mud out the back. Most people lay down a lawn with a shallow border around it, but I wanted to create a garden. At the time I was not fully trained to the level I am at now and being a designer i decided to try and stamp my creative tallent all over the space. Some of my ideas are still pretty good there are a couple of ponds, trees, a summer house, different levels with steps and paths all good 'design' driven stuff. Having put in the built structure I then had to populate the space and so went about picking tree species, shrubs, perenials and bulbs to fill it up. Because I had not lived on the site and experienced it over a number of years I made some educated guesses about what might work. In reality well over 3/4 of the stuff I planted failed or if it survived it was not in a healthy state. I had a choice do I learn from my mistakes and go out and buy new stuff or do I work out there was a greater force out there to help me.

 

What I did was I simply recognised that our estate backs onto a nature site of designated scientific interest and beyond that more natural environments and I left everything for a few years to become overgrown and to self seed. I am now in the process of selectivly manipulating the outcome with a very light touch. The question is was it worth it. The answer is yes. My garden is not what many would expect of that owned by a qualified garden designer and landscape architect, but it is absoloutly alive with wildlife and I have to do very little in the way of maintenance because it is sustainable 95% of the time in its own right. It is like an oasis in a desert of suburban blandness, you would not know it is only about 10 years old.

 

In many ways i feel that something like the development of an understanding of Asperger's is like buying a new house and being faced with a muddy patch. We have completely lost sight of the fact that there would have been something there before the bulldozers arrived which would have given us a load of clues as to what works and what does not. In many ways I feel like a site of scientific interest which backs onto this new estate. I feel like shouting come over here and I can show you what thrives in this environment, but instead people are trying to build artifical concepts. A lot of these concepts are like show gardens, they are only intended to last for a short period of time.Its as if once these individuals pass through their teenage years who gives a toss, these people are not partiiculary worried they have another new show garden to work on for next year. To take the analogy further this shallow approach is meaning very little gets properly rooted and established because too much of its about show. When a stormy autumn comes along followed by a bad winter, these show type garden simply get destroyed. The same thing will happen with people diagnosed with AS in this trendy cycle we are experiencing. At the first signs of serious depression, when relationships break down, or the prospect of long term unemployment comes along like a bad storm is it surprising these individuals get battered and almost destroyed in the proccess.

 

I think a lot of parents are taken in by this show garden approach. It is easy to see a lot of education provision as representitive of a garden centre environment. These places will protect and nurture your seedlings and provide them with a daily dose of liquid fertilizer. The issue is where do we want these seedlings to go. There comes a point where we have to put them outdoors and start to face the elements to make them hardy and stand a chance of getting through a season or two. Once they are established they should be more or less ok. I think the problem is that if we invest too much time and energy into nurturing the perfect seedling we become afraid of putting them outside and the temptation is to keep them in the conservatory where they are nice and safe. If we treat plants like this we can never provide them with the nutrients and energy sources nature can rather we create a stunted manicured pot bound version of the species. I think a lot of the current specialist education system is doing just that with kids who might be better served getting cold feet and braving through a couple of frosty spring nights knowing the sun will come up in a few hours time.

 

For me it is all about creating a sustainable climate around Asperger's. As an individual I think I have thrived though i took a battering in my early years and as such I might not be the perfect specimine of the species but I am at least ###### interesting to look at and have a feel of something natural about me. I think we would do far better if we had the discipline to keep our hands of situations at times and not mess about with them and let scenarios develop in a sustainable way. The fact is I do not think if we carry along our current lines we are going to create a rich environment for people who match the current diagnositc criteria, instead we are creating artificial environments which are about what peoples perceptions are most of which is 'show' rather than seeing individuals as somebody who in the right environment will thrive and make a valuable contribution to the elements around them.

 

A big element in my thinking is that we are making decisions which will impact on individuals at too early a stage in their development. For me it is like looking at a three month old seedling and trying to work out what it might grow into. There are too many preconceptions flying around. We look at the seedling and put a label on it. What we then do is start to mainpulate it to fit preconceptions this is like creating a 'standard' version of the species by removing all the lower limbs so it has a singular straight trunk, we see these limbs as faults to be removed. In doing so we are destroying a lot of the character of the tree though it might look good planted in a line with others along a suburban street. In nature trees do not look like this. My favorite trees are always by the sea or isolated on a hillside where the prevailing elements have created something which is unique and very much of its place.

 

To be able to fully appreciate nature we need to respect diversity and non conformity. These are not easy things to do when your perceptions of a tree for example come from a text book with a glossy color plate showing but one version of the species and how it may look. I think the same thing is happening in many professional circles. It might even have got to the extent where parents are looking at the glossy colour plate and trying to get their own child to conform to it in their own minds, this is a very sad state of affairs.

 

In the same way a tree develops over the years so do individuals with AS. We can take a singular leaf and look at its form and draw our own conclusions about its genetic coding and what species it may be. If we are to learn to love trees for what they really are we need to take a lot of steps backwards and look at it in the whole. This has to be done in real life and not through artifical means such as photographs. What we must then do is look at the tree from all angles and oftewn we will see a very different view of the same thing. Autistic adults are also like this, we can not look at them with a fixed perspective rather we need to understand them in the whole and value their development. If we are too close to a tree we might only ever spend our time looking at leaves and draw the conclusion they are almost all the same, they are 'green'.

 

Not sure how much of this makes sense. If people disagree your thoughts are welcome, this is after all a forum.

 

Darkshine thanks for your response,

 

just a few thought in what should be an ongoing debate on the forum.

[darkshine]

Your description is very interesting and I see the points you are making - but I find your solution is not so clear...

 

People could argue that certain behaviours aren't healthy - and that other behaviours are

 

They could argue that they are driven by social expectation (as I myself have stated before) but this could appear to be more the case when a parent is raising a child - they are still aware if they are being negatively judged by other parents.

 

As such, from my observations and reading so far I would agree that a hell of a lot of work goes into these "seedlings" and this concept of your garden is familiar to me..

 

Last year I started an apple tree from a seed, to turn into a bonsai later on. I wanted to protect it so I kept it inside.

 

I have never done this before so I topped the tree at the end of last season, I kept some new branches and chopped others...

 

What I have this year after it came out of dormancy is a "trunk" and 2 branches from opposite side - it is useless. It had no exposure to outside and is weak. The root is strong but everything above soil level is absolutely useless. If I put it out now I will shock it. I have no choice other than to start again and do things properly. It takes 7 years before a bonsai is a real bonsai and I have learned much in the past year... But that urge to shelter, to protect is strong even with a seedling.

 

The thing is, I know what to do with the tree when it fulfils its potential - I know how it must be trained and clipped and potted, I can work out the location it should belong and can build enough shelter to protect it while still making it grow strong. I have a natural intuition with watering and feeding and I do learn from my mistakes (eventually!!).

 

This isn't so easy with people. Your analogy would be like me growing that tree indoors for a decade and then making a choice - I could either keep it inside where it would not grow effectively, it wouldn't be able to effectively do anything it should do by nature, I would have to do it all for it. Or I could put it outside - but after so long indoors with such a highly intensive level of care and maintenance it would have a high probability of dying from shock.

 

This is similar of course - but with people how do you work this? People may throw everything into the child or teenager - and in some ways that's right and maybe in some ways it is wrong - but the fact is that the natural thing to do (for those able to do so) is to grow up, become an adult and find our place in the world.

 

There isn't much of a place - its like your muddy field - that's already happened and can't be undone - but what should happen next to make that field a better place? What should change? Should there be more help for adults in a different way to current thinking? Or something different?

 

I'm not sure if this even makes sense

[LancsLad]

Darkshine I do not think there is an easy solution in all of this.

 

For me we are now entering the end of a period which is proving to be unsustainable. We have had government policies built on the artificial success of finances generated from the 'city' and massive borrowing under the Gordon Brown 'Golden Rule' which believed that if you threw money at anything you would create jobs and stimulate growth. I think this is very much like seeing a muddy field and believing that anything can grow in it irrespective of its location and prevailing climatic conditions just as long as you throw on some fertilizer.

 

I have always felt that when it come to politics there are two basic options we can take. The first is to provide a free market with very low taxation, this stimulates an enterprise culture where individuals learn to take responsibility and fend for themselves. Such climates i believe lead to respect towards other individuals and the progress they make in the world, it also provides a broad spectrum of expectations within society. The second option is to have a high taxation and public services model. This model tends to compress expectations with individuals feeling they want their fair share out of society. In this second option I feel there is less respect of individuality rather it is driven by collective groupthink concepts which tend to be risk averse.

 

In all honesty I have no great preference for either model which I think are both significantly better than trying to constantly tread the middle ground. The reality of politics in this country is we flip flop between two middle of the road positions which are slightly biased in their direction to the two models I have briefly described but fail to achieve either of their benefits.

 

I think that in trying to find a solution around individuals with ASD conditions we could look at it from similar extremes. The first position is to accept that this is a muddy field type environment with difficult climatic conditions for someone with AS to grow in. Where there are resources available you direct them towards supporting individuals to take responsibility for themselves. In such a scenario I believe and support is better directed at people as young adults identifying their strengths and weaknesses and directing them towards environments where they might flourish. This would mean supporting them with strong anti discrimination law and promoting employer rights to things such as flexible working conditions. In such a climate individuals with AS who took on responsibility to understand themselves better would feel more confident at taking risks in life and would crop up throughout society as they feed into their own niche areas based on skills profiles. The consequence of such an approach would be having less focus on early years interventions. Such an approach respects environments for what they are and the strong will survive.

 

The second approach is you need to prepare and protect the muddy field site. The first thing is this needs a lot of ground work over time to plought the field and work nutrients in. Once the field is prepared you focus you efforts on this small space and sow your seeds, the aim being to produce a crop of real value. Under such an approach you would focus your efforts into early years provision in specialist units and work hard to develop a crop of young people with a diagnosis. You then work hard on them in their early years of adult life to ensure they are strong and viable members of society. Under such an approach you them make a case for the value of this crop and work on the model untill it becomes financially sustainable. In this way it is about saying this might take some real investment in the mid term but the saving in respect to mental health care, unemployment or incapacity benefit as well as ancilary costs such as housing are compensated for. Once the savings are identified in real terms the finances saved are invested into the next field and you move a model on from there step by step.

 

In reality what I think we are seeing is a culture where we see a compacted muddy field and simply throw a few inches of top soil and a bit of fertilizer onto it then plant seedlings at an early age with no real understanding of what species they are, the time of year at which they are planted, and importantly the surrounding climatic conditions. They kind of do ok for a period of time but as the nutrients run out and their root structures get to the compact soil beneath they are highly vulnerable. A storm or drought comes along and we have a case of crop failure. It would be true to say some are lucky in that their roots might find an underlying crack in the sub soil and they get established, what I will say is that I think this is in spite of the system not because of it.

 

I think in trying to find a solution we need to realise that playing about in the middle ground might not be the best option. I personally think that we are trying to do too much of the work away from the realities of the real world. We are neither preparing the ground or placing people into suitable locations well informed. What I feel has happened over the past few years is we have created a nursery, or market gardening culture and it will prove to be simply not cost effective nor able to deal with the expectations of demand. The problem with these artifical environments is that many plants simply outgrow their space and as such they take up enormous resources simply potting them on every few years.

 

I think my own horticultural analogy has some very stark truth in it which might be worth considering. We are often under the mishaprehension that we are creating value in anything we do if we spend time and money on it. I think we tend to use this belief a lot when we try and evaluate the interventions we make with our children. Our belief is we are better investing time and effort early because this yeilds the greatest value. I think this might be true to some extent but we need to look at the whole life cycle. If we look at a horticultural scenario the cost of a seed or seedling produced in lab conditions is not very expensive nor is the compost we start it off in. The value or cost of the plant is dependent on time we put into it and the resources that it consumes. In horticultural terms potting on is a massive commitment and takes time and as such will double the price of a plant each time we have to undergo this opperation. The next point is that hidden resources can greatly add to the cost of plant material. A plant at the begining of Spring will have cost a lot less to produce than it does by the end of Summer simply because of water consumption to keep it going. The question is can we simply get value in real terms from a plant year on year if we keep it in these artifical nursery environments, many people would think so but it is not the case. As an expert I have seen large specimines in 100 litre pots which I would not pay a pound for. They are virtually impossible to move around and get into someones garden, I know the pot will be full of self strangulated root structures which have turned in on themselves and are in knots and they will be dead within a year or so. The same it true of nursery grown trees. When they get too big for a pot they need to be put in a field and after a couple of seasons they are too big for a lorry to transport even into a commercial planting scheme and as such something which was once worth a few hundred pounds at twice the size has not value whatsoever, they are cut down and burnt.

 

The point I am making here is that even if we take a middle ground strategy we need to get the plant material quickly once it is strong enough into a suitable site otherwise it simply eats resources becomes completely needy on an artifical environment and has no real value. I think this might be pretty close to the truth as to where we are going with the generation of Aspies we are creating. I think we are potting them on a few times. Based on intelligence and circumstances some of these individuals might do alright if they manage to get outdoors and onto a good site with the support of a keen and experienced gardener. A lot will simply be placed in an inappropriate position in a setting where they do not really get the resources they need such as sun and water but they will struggle on year after year in a sorry state with very little in the way of annual growth to show for the seasons.

 

If I have a very real concern it is for a group of individuals who are potted up one step too far and pushed due to social expectations into the FE and HE sector. Away from home and suitable resources I feel a lot of these individuals are in danger of becoming pot bound, their root structure twisted and knotted in continuous spirals with no where constructive to go except the tantilising drainage holes at the bottom of the pot which act as a draw to another environment. I think we can even convince ourselve that these individuals look good on the surface and we might clean them up a bit by removing the odd dead leaf or branch. The sad reality is they are too heavy and clumbersome for the system to pick up and it is likely that they will be left somewhere in situ hoping someone else will deal with them.

 

Of course these are just my personal thoughts. I think there are some really important issues I am trying to cover here and would hope what I write might draw out further thoughts and reactions. I am not saying I have any answers far from it, rather I am trying to simply explore the problem as I see it. I may be wrong everything might be rosy in the garden and is very sustainable.

[darkshine]

Your analogy seems to be spot on to me - I was merely providing the bonsai example to show what is probably happening - whereas your example is far more comprehensive.

 

I agree with your thoughts - but what do we do with the ones like me? The ones who need help and who have been shoved into a corner out of the way in a pot that is too small and we are so rigid in some ways that even if you did move us we'd probably metaphorically die for a while through the shock of it.

 

And even if we are pot bound and can't produce much in the way of value (whether aesthetic, creative, productive or other) that doesn't mean that we couldn't do that if we only knew how.

 

People sometimes (rarely actually) ask me where I think I am in life and I mumble out some generic answer to shut them up - when the actual answer if far more complicated than they'd want, they wouldn't understand my explanations due their vagueness, crossing lines, mixed quality and everything else.

 

But despite all that I wouldn't want to be just burnt as waste cuz I can't do what people expect me to do and I seem essentially useless - at the end of the day Lancslad all I want is for someone to give me a chance - but they won't so I have to resort top my previous diagram of "don't trust anyone, they won't help, you're on your own in life, all you can rely on is yourself" and this is a very sad and lonely world to live in - I can 100% assure you of that as I've believed that for so many years - I was told it by my parents almost 2 decades ago now and I can't help but think they were right - but I don't want them to be - you know how totally sick I am of relying on just me?

 

Your future view could well help generations of people to come - assuming anyone listened or figured it out for themselves - but what about those who are here already and the ones that will very soon be here in this position? I do take hope that people who are older than me have found a way - but it's damn hard trying to work out life with no other input - I still remember the last ten years of hell - and I wouldn't wish that on anyone - but I already know that there's scores of people out there who are going through similar battles, who have found out similar things to me, and its kinda sh**ty to say the least. If I could do anything I would help the ones here now - but that aint that simple either...

[LancsLad]

Thanks for comments Darkshine,

 

I think the post is in a way getting full circle and returning back to a position close to its starting point which is I have Asperger's what next? There might even be a deeper question is there a point to a diagnosis which would be a slighlty more contencious question.

 

I feel Darkshine you raise a really key point through your own personal observation, "and even if we are pot bound and can't produce much in the way of value (whether aesthetic, creative, productive or other) that doesn't mean that we couldn't do that if we only knew how."

 

I strongly believe that there is no point going down the route of putting in resources in reaching a diagnosis position for an individual if the process simply stops there. There have been a number of similar posts from adults like this one in my short time on the forum and they all for me see getting a diagnosis as some form of end point. I have in response always been very reticent in advocating that individuals purse this line of action without taking a number of steps backwards, take in the bigger picture and then draw their own personal conclusions. I have said before that because the diagnosis system is a child based construct, and that its primary focus seems to me for parents to get access to further educational support for their child, conclusions which might be appropriate regarding a diagnosis for a 12 year old might not be appropriate for a 22 year old. The point here is its a biased system which should be more responsive to the fact that AS along with other conditions is a lifelong issue.

 

At a personal level a system which was designed and developed around twenty year old's for example would have very different starting points in respect to diagnosistic material. The individuals here would have gone through an extended developmental process and so placing them on a developmental condition spectrum would be far easier. In respect to autistic patterns on the spectrum the picture would be clearer as to what aspects were impacting on daily lifestyles and just as importantly which where not. Other aspects of the individual such as personality would be well developed and as a result easier to isolate from other aspects such as autism. In a well structured adult system we should not therefore be concerned with developing a 'labeling' system rather creating a 'profiling' sytem. Creating a profile is a far more difficult task than giving someone a label on a subjective basis. From a political and economic aspect it is advantageous to deal with this sub section of the population by labeling them up before the age of 6 or 7 than to constructivly profile them in their late teens or early twenties, just a thought but an important one.

 

I feel the problem with a label is that there is not much you can do with it, and there is everything you can do with it, in other words it is a very subjective device. If I want to read a lot of negative things into a diagnosis for AS then I can, in contrast I could see a lot of positive benefits in it as well. For the individual concerned the reality is a mixture, but for example from an employers perspective they can be far more picky and focus on the aspects which apply to their own scenario. It is interesting that we do not have a lot of posts on the forum like this one;

 

"I think I have Asperger's what shall I do? For information I have worked in a bio chemical research facility where I do sample analysis. I find it easy to concentrate for long hours and am very consistent in my work which has an air of perfectionism about it. I am married to my husband and we both enjoy a quiet home life and prefare our own company rather than that of an extended social circle. My interests are in playing online poker, I am also a collector of music memorabilia from the 1990's ........."

 

In this example is the label important, what's going to change other than an individuals self perception? The employer will not be interested in the new label as they are aware of this individuals strengths and possibly weakness and will understand that their 'profile' is a good fit to their role in the organisation. I use this ficticious example to support someone who has a pesonal life profile as opposed to a label, and ask the question in seeking a diagnosis would this individual be risking a step backwards in her life?

 

For me personally my diagnosis was highly beneficial because it added an important level of understanding to my existing 'profile' of myself and as such it did not feel like a label and it felt like a step forwards, though I must say since my diagnosis I have become aware of others treating me like a label which has been interesting. So where did my profile come from. The answer to this was that through a wide range of life experiences and how I reacted to them I was able to look back and start to work out what type of person I may actually be. If I am honest carving out those opportunities and experiences was not easy, in fact it was highly difficult and at this point I am very carefull in ever taking the "if I can, you can line". I know I am a very beligerent, driven individual who is very much a loner by nature, these are all personality traits. I feel strongly because of my personality I was able to get myself into position where my 'profile' found an alignment position. When I found myself in this more natural position I at last felt I could be myself. In many ways I have seen this in another context. There have been a number of women I have met near the top of their profession who are greatly respected by their organisations and bring a very relaxed, respectfull and organised air to the workplace. I have talked to them and they have all more or less said that on the way up they had to act in very artifical ways to break through and get to the level they are at today, their 'profiles' fit the role they are in today so why did they have to adapt in unreasonable ways to get there?

 

The point I am coming to is do we activly set out to profile people at a key stage in their lives or is it a retrospective thing best summed up by and individuals CV at the end of a career?

 

When I was 17 I underwent a form of profiling. I was cycling at the time at a reasonable level and took part in a sports research project at Liverpool University. As part of the research I was a representitive of my sport along with a few others against individuals from football, tennis, rugby, swimming, cricket and rowing to name a few a lot at professional level. The tests involved taking blood samples, treadmill tests to measure lung capacity and efficiency and the one I remeber vividly was having a hollow sqewer pushed into my leg to take a deep muscle fibre sample which was very unpleasant, the £50 didn't make up for that one to be honest. As a sport we came a comfortable second a good bit behind the rowers in respect to fitness levels and as such Steve Redgrave and co you have my ultimate respect. At the end of the test I got my individual profile results. So what did this mean for me?

 

What they showed me was that I was well suited to ultra endurance type sports, I had good lung capacity and the right sort of muscle fibre composition, but I was good not exceptional. At the time I was thinking of going to Loughborough University to study sports science and keeping a focus on my cycling and the results showed that at the end of the day I was possibly not going to be as good as I hoped I could, to be honest the evidence was already there, but you dream don't you. I decided to make a pragmatic decision to pursue another line of action and within the year stopped cycling because I was based in London and developed my rock and ice climbing in the vacation periods. I then watched on as a previous team mate a year older than me turned professional and went on to ride in and complete the Tour de France. The important element for me was I was not jelous of him because I knew what his testing profile was and that unlike me he was not just good but had exceptional results which placed him near the top of our sport. Later in my life I have decided to return back to training for competitive sport, and the profiling I went through at 17 gives me a level of confidence, I know I might not have the best attributes to be a top, top age grouper in triathlon but I might be in the ball park to make a World Championship if I train really hard. I think this level of realism is very helpfull in taking decisions. I have set myself targets to reach each year and have said if I do not hit the benchmarks I will give up on the dream of Hawaii.

 

The picture I am trying to paint of myself here is that I feel I have a pretty strong idea of a personal profile. This is made up of test results, I have talked in the past about personality testing for example. It is based on hard evidence from the world of work and sport. A lot of it though is about understanding what I can and can't do in certain scenarios and drawing parallels in new situations. I do think as you get older we have a better chance of creating a personal profile for ourselves but by that stage it might be getting too late.

 

So how easy is it to profile someone who is young. In my experience pretty easy if you are in the right context. I have been in the past a cricket coach of a reasonable standard and as such have had kids pass through my hands around the ages of 11 to 13 a handfull of which have gone on to represent their country and counties. I would say on average I have said within 10 minutes often a lot sooner of first seeing these individulas that they would go on and reach this level, I can only think of 2 who I have said this of and have not made it. A big point here is i was never interested in seeing them playing against their peers in a comfort zone, you can only make these judjements when they are out of their depth and struggling to adapt to new circumstances. When I was involved in sixth form work I was pretty influential in developing a national scheme based on profiling individuals. In a similar way throw a dozen 17 year olds on a yacht and sail it through the night out at sea in tricky conditions on a watch system, sit back and observe and believe me you learn a lot about individuals, their strengths and weaknesses. The problem is that there is little in the way of profiling in real terms in the current system, rather it is an academic sausage machine which is far too narrowly focused on a small range of skills and attributes.

 

Because of the system I feel we are getting the cliched Aspie emerging. This cliche is of an individual who make it to university, does a science/research based course. Might through connections find an internship in a company and after 10 years or so might fit the ficticious profile I used before. Whilst this might in fact fit the profile for a number of Aspies it is a long way from being representational. I have a real concern that because this is a cliche we simply try and force too much AS material into the particular sausage machine because it has been proven to create some results in the past. There is a big issue here for a large number of adult Aspies and that is they do not fit this cliche and as such rather than see it as an alternative profile to their own they view it as a badge which brings in another set of issues.

 

When it comes to profiling the big issue is are we prepared to respect the opinions of others. When i was a cricket coach I always spoke my mind, I made calls on people, and when things run true to those calls you get a lot of respect on one level, unfortunatly you also make a lot of enemies on another. If you say someone is good for it to have meaning you have to make a call on 20 individuals and say they are not good enough, people do not like that. My defence is this is only cricket try another sport, or music or dance, or academic studies or cookery, but they will not make it as a cricketer. People ignore you carry on and their kids simply never ever make it. In many ways I feel the country is not ready for profiling there is a level of belief in our society that status somehow entitles an individual to be classified as a good all rounder and that we should work on that premesis. In contrast having been through university with some American syudent I find their overall approach to be far more refreshing, there are no god given rights to an education or any other opportunities in life. It is true you need a lot of money to get through their system but if you have talent the profiling system is there and full bursaries are available, it is not perfect but it is a far more honest system than our own. There is also a level of accountability present. If I were to make a call on akid from the slums to go to Havard, that kid would be profiled and they would spend $50,000 or more to support them, but if they did not come through reputations would be held to account. In contrast in this country we han out opportunities to average all rounders and have very little in the way of expectations on them.

 

Going back to your main point what do you do with a pot bound individual. I think the first issue here is that I feel they become pot bound because of labeling which tends to act as a restrictive container. I have seen a few posts in recent weeks where individuals seem to me to be crying out for more and more labels. This might be a cry for help saying I need a new container I am getting strangulated in my existing one. In reality the root ball is dried up and so a couple of taps and the 'brown' container easily slides of and we can slip a 'green' one on of the same volume, is this a solution. For me this is a case of the new label might be nice for a short time but everything feels the same. In a similar way I think a lot of posts are about container bound individuals who see some stainless steel chic container standing in the garden centre and think can you put me in that one as it will make me feel better and looks really good. I see this shiny new container a bit like an AS diagnosis. If the container is a bit bigger then there might be room for a little growth in the short term but then the issues will still be there. In some cases I think the container is actually smaller than the one the individual is currently in. The only option here is start to slice off elements of the root system to make it fit, this in its own right is dangerous. A secondary problem here is that the foliage above the roots is often proportionate to the root system and so the specimine becomes top heavy, and though it has a nice new shiny container it falls over in the slightest breeze. In my experience I can see no safeguard checks in the current system to stop this sort of thing happening in a diagnostic procedure, rather it is all about making someone fit a criteria.

 

The answer is that you have to get the plant out into open ground in the right sort of environment. In horticultural terms this is simply not economically viable and i think the same is true in respect to the HNS and current levels of resources. The problem is that if individuals have become 'needy' by their nature they keep returning back to the NHS looking for answers and the NHS says ok that label might not be right go away and try a different coloured pot because it is cost effective if you have do do something out of guilt. To be honest a lot of the time they say we potted you on this is the largest pot we are allowed to handle on health and safety grounds tough ######, that's your lot. I believe the answer is to get away from the label and to start to create a personal profile for ourselves.

 

Very often there is enough root structure there to support the plant the problem is it is all twisted and condensed into a tight ball. Some of this route structure is realtively new and as such soft and can be untwisted. Other root systems have become woody and hard and as a result are playing a negative role in the system and to be honest it is best if they are cut away and discarded to promote fresh growth. The issue with a plant is that there is only so much work like this you can do and in doing so there is a very great danger. In the centre of any plant system there is what we call a 'tap root', this is the main root which needs to be preserved otherwise we will kill the plant. This tap root is the one which was there when the plant was a little seedling it is the one which is the direct link into the stem and the foliage above, sever this and we disconct the whole top of the plant from the bottom and it dies. For me this tap root is our 'core personality' and is deffinatly not something called Asperger's. The problem is that this can kind of feel like the end of a Jmaes Bond movie, which wires can we cut, if we do not the bomb goes off, if we do and get it wrong then the bomb goes off. The problem is no one in the NHS fancies being 007 in real life it is too ###### dangerous a job and the pay scale is not worth it.

 

When you look at the plant and see a big hard swollen root then it is easy to think this must be the tap root and to trim everything else. The reality might be that the palnt was in its formative years sat on the outside of a block of plants in a nursery and only one side of the pot ever revieved water from an irrigation sytem, as such this is not the tap root rather the one which recieved some form of nourishment. I hope you can see where I am taking this. At times the labeling of ourselves plays such an important role in our lives often to the extent of everything else that it provides nutrition to the extent our root sytem is completely out of balance and we forget the seedling we once where. This is in many ways conterproductive when you do not transplant you specimine into nature at the right point in its life so that its tap root can re-establish and provide that important link.

 

The key I am advocating here is to go and find your tap root and then start the work on the tangled root ball. They way to identify the tap root is not to focus above ground but to look at the plant as a whole. We need to get it out of the container shake all the compost off which has no nutritional value anymore and follow the plant down top to bottom looking for clues as to what elements are close to the origonal seedling it has grown from. Some plants might look good on the surface some might not it doesn't really matter what matters is we can read the whole story of the thing. It would be great if the NHS was prepared to do this and help us in the process but again they are resource limited. Some lucky individulas might be able to do this with the help of a private therapist but for others i think we should ask close friends and family and ask their opinions on what sort of plant do they see. I think a lot of them will focus on what exists above ground, they dont understand root structures, but often we are multi stemmed and thier opinion can count in identifying our form and strengths. Given this knowledge I think we need to then profile the plant as a whole looking at its strengths and weaknesses. To go through this process and then simply try and re pot it again would be a disaster. There is no way you could get compost inbetween the root ball and get it safely back in the pot for it to continue on sadly as before. This is why I say think long and hard to people who are playing at this process as an adult, if you decide to go for it you need to go for it. I think very often therapists in the NHS system make a start but realise they have made a mess and then quickly try to shove it into a new pot to hide their mistakes and hand out a new label as a cover up procedure.

 

There comes a point in this process where we need to cut the ###### out of the root ball to open it up whilst maintaining the important tap root sytem, this is the important task. The issue then is we have an imbalance in the plant. We do not have enough root structure to support the head of ther specimine. We have no choice really in that we have to balance the plant out and that means selectivly pruning off the top of the plant, deciding what is important and what is not. The final stage of the process is understanding that through gaining a real understanding of the plant/ourselves through developing a profile we have a knowledge of where that plants natural environment should lie and it is then a realtively easy task to identify a suitable environment to relocate, though that might be a journey away but we know where we are going.

 

When it comes to digging a hole and putting the specemine into this new location it is an exciting point in lifes journey. It kinds of feels as if we have come to the right place after all, it is also a scary moment. The plant is vulnerable and a bit bare and we do not know what the seasons will throw at it. It is also quite exciting because there is that sense that whilst the next year or so might not provide definative answers in 10, 20 or 50 years time there might be a very unique yet impressive tree standing on this spot which will bear little in the way of resemblemce to what was planted today, yet all its genetic characteristics were there in the first place.

 

Darkshine I think the aim of any system should be to put down unique and strong trees into our landscape and that includes individuals from all sections of society we are after all a very diverse planet were everything has a purpose, the laws of evolution have decided that. In my opinion current systems do not have the aim of creating material for all landscapes rather they are very biased. I know for example I am no regular Cherry tree grown to sit pretty in a designer show garden with my pale pink blossom casting a carpet on a manicured lawn as a focal element, rather I am a Juniper well adapted to surviving in harsh environments, my personal choice being a limestone escarpment high on the open moors. I spent yesterday riding my bike through hordes of cyclists on a charity event, then an organised sportive and eventually through a cycling road race working hard to get across a section of the route without getting caught up in the action, up to that point I had seen possibly 100 other cyclists,about 30 helpers who shouted you are going the wrong way, and it was starting to ###### me off. After a hour or so I came to the bottom of a 5km climb, dropped it into a suitable gear rose out of the saddle and started working at a steady pace untill I broke out onto the open moors of the Pennines. Up there it was hard work the wind was gusting at about 50mph and I had to work my way back into it. I didn't see another cyclist for an hour or so rather I simply worked hard, opened my eyes and took in the landscape in isolation. I then reached a point where I sadly came to the point where the road went steeply down hill, I enjoyed the buzz of the descent but was sad at what i was leaving behind. Within minutes i was again seeing cyclists parked up in their cafes or out with friends in groups, I caught one group on a small hill and they tried to tag on behind me puffing and panting and would not engage in converstation, so I put in an acceleration and dropped them at the next climb with a 'see you around lads'. I even got caught up in the race again and at one point realised the race leaders where just behind me. I pulled over let them past and get 20 metres or so and then kept pace with then untill our paths turned different ways, quite funny to see them looking back and I was still there smilling at them. When I got home I was at first a bit frustrated I had simply wanted a quiet ride in the hills. On reflection I decided the core element of the ride was still there and as such I had achieved what I set out to do. In truth was it a good ride or a bad ride. All the events I bumped into for sure simply highlighted things I already know about myself the 'profile' was correct yet again. I am what I am, I know it, am happy with it, and as such I have my place in the world even though I might not fit into the majority of other peoples concepts.

 

There has been a time in my life where I have made a decision to transplant myself into my current environment and before doing so I did a bit of tidying up work so i was ready to make the adaptation. In truth I have never been a pot bound individual I believe because I have not had to live with labels hanging over my head and weighing on my shoulders. I suspect at the end of the day there is a feeling of security being in a pot something I have never really felt and I think this can be destructive because it is false, nature never decided that trees should live in pots no matter how big and in the same way i do not think it is right for individuals to have to live in a natural sytem once they have reached a stage of development, seeing this for yourself though might be very difficult and as such are any of these ideas a real answer or do they simply highlight the depth of the problem?

 

Just a few thoughts, comments welcome.

[darkshine]

There has been a time in my life where I have made a decision to transplant myself into my current environment and before doing so I did a bit of tidying up work so i was ready to make the adaptation. In truth I have never been a pot bound individual I believe because I have not had to live with labels hanging over my head and weighing on my shoulders. I suspect at the end of the day there is a feeling of security being in a pot something I have never really felt and I think this can be destructive because it is false, nature never decided that trees should live in pots no matter how big and in the same way i do not think it is right for individuals to have to live in a natural sytem once they have reached a stage of development, seeing this for yourself though might be very difficult and as such are any of these ideas a real answer or do they simply highlight the depth of the problem?

 

Just a few thoughts, comments welcome.

 

It simply highlights the depth of the problem to be honest and personally I have been fighting against labels of one kind or another from being a child - I had a lot of fight in my teens against this but I made mistakes and isolated myself - and then I gave up living from 17 to 24 I didn't want to live and wasted those years.

 

Now I don't know, I feel stuck with no way to go - whether that's really being pot bound or not doesn't matter - the point is that there's not much place to go - personally I swing between locking myself away or wanting to escape - that won't work - I have one hell of a mess to sort out and to be honest I don't have the first clue in some ways - its part of what makes me hard to understand, I can know so much stuff on one hand and on the other I know nothing - not many people want to hear it though

[LancsLad]

Darkshine I agree with you that there are no real answers in my posts, rather they are simply a set of personal ideas, and as such are they transfarable? What they represent for me is a thought process which I believe has led to change and improvement in my own life in dealing with issues such as Asperger's.

 

I think I have been able to make progess because of a number of factors. Firstly I feel I have been able to understand the environment in which I sit. I have had experiences of the education and care systems and as a result am able to take a reasonably balanced pragmatic approach to understanding them. These systems are based on the input of people backed up with resources and they are overstretched, under resourced and burnt out. When I rarely make contact with these systems I am often left feeling that it is the person opposite me who needs support they look drained and exhausted. I had a meeting last week with a welfare rights officer and she was honest in saying she felt I would be far better at defending myself at a future tribunal rather than using her in the local courts because in her words I was "passionate, credible, honest and intelligent", I sat there quietly thinking I came to that conclusion about half an hour ago. I am not apportioning blame on many professional services but rather I can accept why there are like they are. The result is I know the answers need to come from myself and most importantly the energy required to work through personal issues.

 

The second area which has been a key theme in these posts is I do not carry labels easily, and if i decide to carry one for whatever reason it is going to be a label I construct and place on myself. I think many of us struggle at times with self esteem and by subscribing to a label I often feel that whilst that may provide a sense of inclusion it unfortunatly gives away oportunities for others to come along in our lives and take away some of that precious self esteem through prejudiced ideas.

 

Even though I have been on the forum only a few months when I see a new post titled 'Does it sound like I may have Asperger's' my heart sinks thinking "oh no not another one". This is nothing to do with have i got the energy to answer, but is all about here is a real person who has come to a point in their life where they are asking others to pass judgement on themselves and don't really know what might possibly lie on the other side of such decisions. I think a lot of this drive might be that initial desire for inclusivity, to be part of a group of individuals who are also like me, I can understand that as a strong emotional draw. My belief however is that if your life to this point feels as if you a walking through some form of wilderness, a dense jungle or an open desert for example then there might be a reason for feeling that way, and that is it is a jungle or a desert out there, that is the reality of the environment. I think individuals might feel that if I get a diagnosis for this thing called AS then I will find a strong healthy and vibrant community opperating in this harsh environment. My reaction to this is do you not think you would have spotted it by now if it existied?

 

If I was to carry this analogy through I would say that for many seeking out and getting a diagnosis is in my experience an emotionally draining experience. It could be said it is like handing over one of your last two remaining waterbottles in the hope of recieving a human guide or at the very least a map to guide you out of this desert wilderness but insted to get a cardboard rectangle with the letters ASD written on it hanging around your neck from a bit of frayed and itchy string. Now in the short term you might feel that is a medal given in respect to your hard work in dealing with your life up to that point, but i suspect any sense of elation will wear off quickly.

 

In my personal experience there isn't an AS settlement out there in the form of a sustainable community for adults, rather we are left trying to self support each other using devices such as this forum. At times this might amount to nothing more than walkie talkie transmissions to each other saying "seeing a lot of sand and rock at the moment, feeling thirsty over and out".

 

I know I am taking things from one side of the argument here, but I do feel there is a level of honesty in these thoughts, and for these reasons my heart does sink when a newbie comes to the forum saying I think I have Asperger's.

 

I can fully appreciate why for many individuals living with AS and other related conditions is like living in a wilderness. I think I live in my own type of wilderness and that is one of the open moors if I had to draw a comparison to a desert. I get a strong sense from reading many peoples posts that my own environment might not be as severe as others and this is difficult or impossible to get a handle on. Are my symptoms a little less severe, are my experiences a little bit better or am I simply a little bit more mature given my age I really dont know and because such questions can lead to labels its a path I will not travel. What I feel for myself is that whilst my own moorland environment would feel very bleak to many people for me it is a very comforting place in which I have become atuned. It is not a very complex place but it is built upon a very strong underlying landscape form evolved over thousands of years. This landscape form is covered in a blanket of folliage of moorland grasses, bracken and heather. Again to many eyes this might appear to be drab and booring but on close inspection there is a mass of textures within its structures. At times of the year when the heather breaks out in a mass of colour or when the snow falls the environment takes on a new character and is magnificent. There is little in the way of human elements in this landscape, the odd drystone wall built from local stone which only goes to reinforce the sense of place. I stand as a tree in the open landscape with my roots firmly anchored in the underlying fissures of the bedrock. I know the storms will come they always do but my form though bent and twisted has evolved to take into account the prevailing wind directions. I might be strong but I bear the scars of previous storms on my damaged limbs but I will be here for some time yet. I will get old and my structures brittle and at some point I will fall. It will not take long for my remains to rot down in this environemnt and then i will be forgoten. There might be a legacy if my seeds by chance managed to fall in some crack on an outcrop and against the odds another example of my species became established and as such the cycle will continue, but tracing its liniage is an impossibility rather we simply accept that these things happen.

 

If I have advice it would be take a look around you and understand the landscape you are in and ask is this where I belong? I feel for some whilst the answer may be close to them the level of expectations can be a hurdle they fail to cross. I hope it comes across that I have never really had expectations on my environment being anything other than what it is and as such when it turns out to be open moorland I have been able to accept this fact. There have been times where I can see in the distance a different landscape that of the city with its artifical and manufactured elements. For sure it has its appeal but I understand that as a species I am not really suited to be there because the city is a place of human judgement. Whilst I look tall and strong in my moorland setting, in an urban environment I am dwarfed and my twisted and aesthetic lines are too much of a contrast to the sharp defined edges of built forms. If I were to find a place it might be in some pastiche of a courtyard corner sat amongst cafe culture confined in a pot or contained in a concrete tomb covered by an iron grill to stop my root structures emerging and potential causing a state of unbalance beneath a courtyard table, we can't have spilt capachinos can we! No I know my natural environment and I am happy in understanding its real value and my place in it.

 

If I am happy in this landscape does it matter as to what species I am? For the expert the idea of a label might be important but I am not sure if my location has ever been visited by a real expert. It is true to say that they have gone and studied similar environments and have defined their knowledge around these places but who is to say I do not have some rare unidentified species growing between my roots if no one has come to have a close look. I know people have been interested in me for a while. I see the ramblers ocasionaly on the hillside and they will take a bearing towards me and use me as a focal point, but they never get close. They see a further beacon in the general direction they are pursuing and so head for that, thought they might have given me a passing thought I doubt they questioned what species am I. My regular visitors are the birds who feed off me when my fruits are ripe and in sustaining them I know I am increasing the chances for propogation, but do they know what I am or rather I serve a purpose in their own lives. Importanly when I look close i realise that around my form the ecology is somewhat different, I provide shelter and stability in this environment and that enables other things to flourish around me and as such creates a very personal and intimate space.

 

Badges don't really work in my environment, you might hang one around me but because little thought and quality has gone into its creation it will not last more than a season or so before it rots, breaks and is blown away in the wind.

 

Do I have a problem living out here on my moorland landscape. No but I am a loner by nature and that is 'the' key element in my ability to make sense of my world. I can see the issues because my position is somewhat elevated but it need a clear day and the smog of the city is making it harder and harder to understand what is happening over there and i get the feeling it might not be too healthy a environment anymore. Life can be hard but I know that season by season I will get stronger though the inevitable decline will happen and I believe a storm will come to break me in the end. The key to understanding in my personal experience is acceptance and the subsequent quite period which follows. If we are really still then our senstation become more attuned and we are able to take on what is around us and see the value in it. Often this challenges existing expectations and perceptions, but for me experiences feel so real in comparison as to what has gone before and as such they reinforce the truth about my position. And that position is simply ' I am what I am'.

[Eccentric]

Going back to what you were both saying earlier about coverage of autism generally focussing too much on young people, I suspect the reason for this is a common misunderstanding, even amongst professionals who work with autistic people, about how subtle the symptoms of autism can be. I think the concept of autism in adults tends to be ignored because people wrongly assume that if you're autistic, the symptoms when you were a child were so obvious that you must have got some help then.

 

Which certainly isn't the case, especially if you were a child at a time when very little was known about autism (in my case, the 1970s). At home and at school, I was seen as merely a rather shy, nervous child who had difficulty making friends but was well behaved in class and good at my work. The first time it occurred to me that I might be autistic was less than ten years ago when I watched a documentary by Temple Grandin, an autistic woman who works with animals and has written a number of books and given many talks on autism.

 

The cliches about autism, such as being brilliant at one thing at the expense of everything else (which certainly doesn't apply to all autistic people, and not to me either) paint a misleading picture. The various TV documentaries on the subject, while reasonable informative, tend to dramatise it, focussing on the most exciting cases, simply because it makes better television than the more mundane reality that most of us experience.

Edited May 19, 2012 by Eccentric

[darkshine]

Darkshine I agree with you that there are no real answers in my posts, rather they are simply a set of personal ideas, and as such are they transfarable? What they represent for me is a thought process which I believe has led to change and improvement in my own life in dealing with issues such as Asperger's.

 

I don't think any one person has all the answers anyway - but it is interesting to discuss and new ideas develop and because it is not a simple thing it is good to think on different lines every now and then - in order to progress.

 

I don't think they are transferable as the ideas require some medium in the middle to shift people from one idea to another - and because of the way the system is some of us may get trapped into thinking we need that help.

 

The more transferable part is in assessing our own points of view and being prepared to adjust them.

 

 

 

I had a meeting last week with a welfare rights officer and she was honest in saying she felt I would be far better at defending myself at a future tribunal rather than using her in the local courts because in her words I was "passionate, credible, honest and intelligent", I sat there quietly thinking I came to that conclusion about half an hour ago. I am not apportioning blame on many professional services but rather I can accept why there are like they are. The result is I know the answers need to come from myself and most importantly the energy required to work through personal issues.

 

The bit I underlined made me laugh - I've had meetings like that

 

 

 

The second area which has been a key theme in these posts is I do not carry labels easily, and if i decide to carry one for whatever reason it is going to be a label I construct and place on myself. I think many of us struggle at times with self esteem and by subscribing to a label I often feel that whilst that may provide a sense of inclusion it unfortunatly gives away oportunities for others to come along in our lives and take away some of that precious self esteem through prejudiced ideas.

 

I think any label that could impact on our sense of self and our identity can have harmful consequences that we aren't always aware of.

 

 

 

My belief however is that if your life to this point feels as if you a walking through some form of wilderness, a dense jungle or an open desert for example then there might be a reason for feeling that way, and that is it is a jungle or a desert out there, that is the reality of the environment. I think individuals might feel that if I get a diagnosis for this thing called AS then I will find a strong healthy and vibrant community opperating in this harsh environment. My reaction to this is do you not think you would have spotted it by now if it existied?

 

In that respect I am fortunate, for I never believed there to be any healthy and vibrant community - I subscribe to your last sentence - if it existed I would have spotted it by now - that goes for any deluded ideas of a perfect place, whatever subject it relates to, but then I have often been accused of being overly negative...

 

 

 

 

My belief however is that if your If I was to carry this analogy through I would say that for many seeking out and getting a diagnosis is in my experience an emotionally draining experience. It could be said it is like handing over one of your last two remaining waterbottles in the hope of recieving a human guide or at the very least a map to guide you out of this desert wilderness but insted to get a cardboard rectangle with the letters ASD written on it hanging around your neck from a bit of frayed and itchy string. Now in the short term you might feel that is a medal given in respect to your hard work in dealing with your life up to that point, but i suspect any sense of elation will wear off quickly.

 

In my personal experience there isn't an AS settlement out there in the form of a sustainable community for adults, rather we are left trying to self support each other using devices such as this forum. At times this might amount to nothing more than walkie talkie transmissions to each other saying "seeing a lot of sand and rock at the moment, feeling thirsty over and out".

 

I know I am taking things from one side of the argument here, but I do feel there is a level of honesty in these thoughts, and for these reasons my heart does sink when a newbie comes to the forum saying I think I have Asperger's.

 

Yes there's a level of honesty - but for some its easier to say that than others. I never saw AS that way, I never had that sense of relief and elation, it was never there to wear off and my view points were at the other extreme - so maybe this is a question of finding the middle ground, or even of finding new ground.

 

As it is I can relate to the wilderness analogy - and I see a lot of rocks and sand right now...

 

Over and out

[darkshine]

Going back to what you were both saying earlier about coverage of autism generally focussing too much on young people, I suspect the reason for this is a common misunderstanding, even amongst professionals who work with autistic people, about how subtle the symptoms of autism can be. I think the concept of autism in adults tends to be ignored because people wrongly assume that if you're autistic, the symptoms when you were a child were so obvious that you must have got some help then.

 

Which certainly isn't the case, especially if you were a child at a time when very little was known about autism (in my case, the 1970s). At home and at school, I was seen as merely a rather shy, nervous child who had difficulty making friends but was well behaved in class and good at my work. The first time it occurred to me that I might be autistic was less than ten years ago when I watched a documentary by Temple Grandin, an autistic woman who works with animals and has written a number of books and given many talks on autism.

 

The cliches about autism, such as being brilliant at one thing at the expense of everything else (which certainly doesn't apply to all autistic people, and not to me either) paint a misleading picture. The various TV documentaries on the subject, while reasonable informative, tend to dramatise it, focussing on the most exciting cases, simply because it makes better television than the more mundane reality that most of us experience.

 

Its hard to piece it all together isn't it? As an adult... Its hard to find where you fit and its doesn't magically make everything better either - especially when you realise that essentially a lot of us are on our own.

[LancsLad]

Eccentric thanks for joining the discussion. I like the point you make regarding cliches and how these might relate to autism. And to pick up on Darkshine's last point of 'its hard to find where you fit', here are a few of my thoughts.

 

I think we have reached a point in society where people do not accept easily the idea of average, nor is British society comfortable with strong levels of individualism. A natural pattern of skills and attributes over all members of society would see a concentration in the middle ground where mean values lie, and with it perceptions of being average, gradually thining out in density as we move away from this natural centre. I personally believe that in the past 30 years or so we have seen a culture emerge where individuals are trying to psychologically leverage themselves past others and this has led to what I would describe as a doughnut effect as the middle ground the natural habitat for many has been vacated.

 

In many ways this process has not had much of an impact on individuals who naturally lie a long way from a central position. The people it has been a disater for are those who I feel naturally lie in the zone of the doughnut, a lot of their values have been hijacked.

 

I suspect there are a lot of individuals on the autistic spectrum who this might relate to. I suspect there are quite a lot of adults who might for example gain a diagnosis for say Asperger's if they pursued this line who in the workplace feel I am slightly different. There are some aspects to the symptoms of the autistic spectrum which seem to sit easily with me, yet there are others which might not be appropriate. The problem is when everyone starts to claim a bit of the action because it is fashionable to do so. I can remeber being in work and struggling with long periods of deep clinical depression, being suicidal at times. At that time it was starting to be fashionable to be depressed, every one was you asked, and this made things very difficult for me. I was finding it hard to talk to senoir managers and for them to take my illness seriously. The time they did was when my background health had deteriorated to such an extent I went into an office and said look I have got a bad case of shingles and lifted my shirt and the whole of my torso was a raging mass of nerve inflamation, because they couldn't mirror that they got the point and started to take me seriously.

 

I am worried that we are entering a similar period where autistic traits are seen as fashionable. When there are cliches around such as those associated with levels of intelligence it is easy for people to start to cherry pick what they want from a cliche and come out with statements such as 'oh i'm a bit autistic it's the bit where you are hyper intelligent'. By doing this they are leveraging themseleve beyond someone who might have genuine autistic traits many of them possibly negative and as such are creating a false sense of place and possibly conditions which lead to denial. In fighting against feelings of denial I think some people are naturally inclined to then try and lever themselves artificially out of the donought territory where they may naturally lie. In doing this they read up and take on every characteristic of the autistic spectrum as they see it and start to live a false life simply relating themsleves to the deffinition of the badge.

 

In so many ways I do think it is hard to find a place where we naturally fit, but once we do we should more or less stay there. Unfortunatly I feel that when lots of elements in society see fit to reinvent themselves constantly in line with media perceptions of what is fashionable and what is not then being comfortable with your place when others all around you are jumping in and out of it is very disconcerting. The issue might be individuals simply walk off loooking for somewhere quieter in trying to define their difference. I think we have been through a period where nearly almost everyone was depressed, are we going to reach a point where everyone has a deep psychological issue which makes them interesting?

 

Just a few thoughts.

[darkshine]

I've engaged in similar discussions in the past - and I don't do well at them - purely because I do not see how being on the spectrum is fashionable/popular... I just can't get my head round that. Same goes for your depression example - having continual difficulties with depression myself - I just don't see how it could be a thing that people would want...

 

Or it that the point? That they use some label cuz they get some kind of "benefit" out of it somehow?

[LancsLad]

Darkshine I think there are two elements at work here in my own mind which lead to how I see things personally.

 

The first which is related to taking on board negative aspects of something is connected to a Britsih culture of self deprecation. I could give loads of examples but can remember turning up for an exam and being outside the hall with everyone saying things like 'oh I have done no revision for this, I am bound to fail'. I am stood there thinking to myself 'I know you have done a fair bit of revision I have seen you, and you probably will not fail and get a grade B because thats what your previous performances indicate your level is at'. This sort of behaviour is all over our culture, we go out for meal and its 2 minutes off 'shall I or shall I not I have a desert, I think 'you have eaten too much so far if you are going to do it, do it, and let the waiter get on with their job'. At the core of this type of behaviour is a social game at play of feeling out what the mood is amongst the pack and trying to balance behaviours and thinking so as to fit in.

 

As someone with Asperger's the cliches would say I have difficulty in understanding this sort of behaviour. I would disagree, I have difficulty understand 'why' someone would want to behave that way as I never would myself, but I do understand it and find it very frustrating. I think with ots of people they engage in these behavioural patterns without even starting to think through the consequences. Another issue with this type of behaviour at a subconcious level it is all about removing value. In throwing around comments like a ball it is surprising as to how quickly groups can get to decisions that 'no one at all has done any revision' or that 'all these deserts are ok to eat because they are good healthy ones'. My own experiences of group conversations is that putting value into them is something which is not welcomed as in this example from my life.

 

I might be out in a group of unfamiliar people and conversation turns around to something life football hoping everyone likes football. Trying to keep a reasonably low profile when asked do you watch football I will be truthfull and say something like 'yes I do from time to time, but I would not call myself a proper fan anymore'. The rest of the group will in deciding if the conversation has millage normally rack up the intensity of their interest in the game untill they are talking as if they think they are the England manager though they are talking a complete load of ######. At some point I might throw in a comment or two which slices through their level of understanding at which point they then start to question where that came from because I had said 'I am not a proper fan anymore'. I then explain I used to follow a premiership team a lot but as I now do not hold a season ticket, or buy merchandise through the club store, I know I am doing little to support them other than paying my Sky subscription to watch the games on TV. What I am then saying is I think I am reasonably educated in the game and have seen a lot of live football at a top standard. The point I am making is that often people do not take time to assertain relative values before going into a conversation. Often this is against a desire by many to get the conversation onto a level playing filed and this can normally only mean one thing the level of the lowest contributor in the social game.

 

When you put these social dynamics for example into a work environment what happens. Someone with depression returns to work having been forced to take a week off sick with the dissease and faces a handfull of colleauge on their return in a coffee break. Where have you been last week, answer 'I was off with depression'. Within a minute or so the group has decided everyone is depressed all at the same level and this is all designed to make the idividual who has been ill to feel part of the pack, when in reality you might think 'you havn't got the faintest idea'. This would be ok if people could deconstruct behaviour and reasemble it and place value on the components but they can't. What we now have is a pack statement that we all get depressed but no real understanding about the realities of this. In maintaining a status quo in the group it might be an idea to say I am feeling a little depressed from time to time, even if the trigger is the special offer of buy one get one free has been stopped at Tesco on their favorite coffee brand.

 

The most rediculous example of this I have experienced is following a panic attack at work in front of a group of kids which resulted in me to be taken to hospital and being detained for monitoring. On returning the next day I was faced with this must be embarasing for you so we will make you feel part of the pack. The point was it was not embarassing it was a panick attack and I had worked out what the triggers were. In making me feel better I was told by a group of adults that they all had panick attacks from time to time and that was fine and not to worry about it and that I should try and be a bit more relaxed. I was thinking you should have told me that yesterday and that would have saved you the trouble of calling out an ambulance even though I told you it was a panick attack and not a herat attack and not to do so. The worst part of it because of this social discounting I do not feel they were any closer to understanding what a panick attack was and what might trigger them, insted a position had been reached where, we are all the same and that will make everything ok.

 

When it comes to what is fashionable and what is not I think the driving force is often the media. Darkshine I believe we have fashionable cycles in the media often generated by either lobbyists or individual journalists. To run a media story there needs to be a certain level of content available with which to back it up. At a more traditional level there was a strand of journalists who would work on an area for a month or so collecting information and interviewing individuals. In creating additional value this type of journalism works well in media groups who have multiple outputs so the work could be presented in different format in say the Sunday Timse and the News of the World because they were outputs from the same organisation. This approach to journalism has moved on into a new area and that is of the lobbyist. Here someone puts forward the case for running an article or peoducing a TV news segway. For a lot of charities raising awareness is a key concern and so investing in such activities has created an industry in its own right. So from a media perspective things can become fashionable for a period because their is easy content available.

 

We then have to look at how we respond as a society to information. When bird flu was a high profile media story how many common colds suddenly turned into this deadly strain of the flu virus. The answer of course is none, they were common colds after all, but in the minds of people? And I think there is an issue here for a charity raising awareness anout something such as Asperger's. Do a good job and that means for them get the Asperger's story into the media, this inevitably means more people will look at themselves and say I think these traits of mine might mean I have Asperger's. Put a positive slant on the condition to make it more acceptable to the general population such as 'there are highly intelligent individuals with Asperger's' and that can only increase the uptake of people considering the possibility. I ask a simple question here would the time and effort spent on raising media profiles not be better spent on providing more training to GP's?

 

In both cases do people really benefit from these sort of behavioural approaches I do not think they do Darkshine. What I tend to think is that as a pack behaviour they feel connected to something so that might be a help psychologically in the short term, but I do agree with you why you would want to make artificial connections to areas such as depression ans ASD beats me.

 

A few more thoughts.

[darkshine]

Darkshine I think there are two elements at work here in my own mind which lead to how I see things personally.

 

The first which is related to taking on board negative aspects of something is connected to a Britsih culture of self deprecation. I could give loads of examples but can remember turning up for an exam and being outside the hall with everyone saying things like 'oh I have done no revision for this, I am bound to fail'. I am stood there thinking to myself 'I know you have done a fair bit of revision I have seen you, and you probably will not fail and get a grade B because thats what your previous performances indicate your level is at'. This sort of behaviour is all over our culture, we go out for meal and its 2 minutes off 'shall I or shall I not I have a desert, I think 'you have eaten too much so far if you are going to do it, do it, and let the waiter get on with their job'. At the core of this type of behaviour is a social game at play of feeling out what the mood is amongst the pack and trying to balance behaviours and thinking so as to fit in.

 

Nearly 3 weeks later.... I’ve been busy as I’m sure you can appreciate – but I kept this conversation noted down as I knew I wanted to reply at some point

 

I have noted these types of behaviour.....

 

As someone with Asperger's the cliches would say I have difficulty in understanding this sort of behaviour. I would disagree, I have difficulty understand 'why' someone would want to behave that way as I never would myself, but I do understand it and find it very frustrating. I think with ots of people they engage in these behavioural patterns without even starting to think through the consequences. Another issue with this type of behaviour at a subconcious level it is all about removing value. In throwing around comments like a ball it is surprising as to how quickly groups can get to decisions that 'no one at all has done any revision' or that 'all these deserts are ok to eat because they are good healthy ones'. My own experiences of group conversations is that putting value into them is something which is not welcomed as in this example from my life.

 

But as clichéd as it is – I do have trouble understanding some of these behaviours – the one’s you detailed are quite common and as such a little easier to work out – my personal description is that they are following some convention that means you either say the opposite of what you really think, like: “I’m going to fail”

 

And the other is (in my opinion) just one of those dull conversation points that I really couldn’t give a damn about.

 

If someone said to me “why do you think that person says they will fail despite the fact you knew they revised?” I wouldn’t be able to offer much more than the opposite thing – that people do it in a self deprecating way – when they really think that they are gonna get a good grade – I base this on the fact that there was this really studious person when I was at school who said that very thing, they got an A and dissolved into a near tantrum saying “I thought I would get an A star” over and over again – which unfortunately made me burst out laughing and I got ganged up on as if it was me that had upset that person – and not their own deluded thinking and lies.

 

As for the pudding – as someone who doesn’t really care about food I assume they are either:

 

a. So boring that they feel the need to discuss desserts

 

b. They don’t feel they can have dessert unless everyone else says yes – and I’ve even been forced to order dessert for that reason once – which was stupid – either have one or don’t – as I see it if for some unknown reason you are still hungry after starters and main course then just have dessert

c. They are greedy

 

I tend not to get involved in such discussions – they bore my ###### off to be honest.

 

I am the sort of person who thinks they will fail at exams, but for very different reasons than what other people seem to say it for.

 

I never have issues with dessert because I only go to places once in a blue moon, and then I go where I know certain food is served – I only have like 3 options of dinner anyway and one of those is 2 starters instead of a main – so I can already calculate at the start whether I will want a dessert – and because I only go to places I like, I already know what that dessert is – and again its only one of about 3 options nothing like mathematics to make choices

 

I guess that’s why my responses don’t fit in then – if it is really about removing value – because when I say I think I will fail – I really do think that – and I won’t lie and say I did more or less revision just cause everyone else does. And with the dessert – I would never compromise my tastes and agree with such a judgement that “they are all equally good” cuz no way are they ever going to be that (not in my view anyway) see? That’s just 2 examples and if I think of it your way – then I have a pretty clear example of why people might find certain things about me abrasive or weird – like I’m being purposely difficult or awkward...

 

I might be out in a group of unfamiliar people and conversation turns around to something life football hoping everyone likes football. Trying to keep a reasonably low profile when asked do you watch football I will be truthfull and say something like 'yes I do from time to time, but I would not call myself a proper fan anymore'. The rest of the group will in deciding if the conversation has millage normally rack up the intensity of their interest in the game untill they are talking as if they think they are the England manager though they are talking a complete load of ######. At some point I might throw in a comment or two which slices through their level of understanding at which point they then start to question where that came from because I had said 'I am not a proper fan anymore'. I then explain I used to follow a premiership team a lot but as I now do not hold a season ticket, or buy merchandise through the club store, I know I am doing little to support them other than paying my Sky subscription to watch the games on TV. What I am then saying is I think I am reasonably educated in the game and have seen a lot of live football at a top standard. The point I am making is that often people do not take time to assertain relative values before going into a conversation. Often this is against a desire by many to get the conversation onto a level playing filed and this can normally only mean one thing the level of the lowest contributor in the social game.

 

Yes and that’s probably why I do a similar thing to you and then later end up having to justify my position even though nobody else gets called up on it.

 

When you put these social dynamics for example into a work environment what happens. Someone with depression returns to work having been forced to take a week off sick with the dissease and faces a handfull of colleauge on their return in a coffee break. Where have you been last week, answer 'I was off with depression'. Within a minute or so the group has decided everyone is depressed all at the same level and this is all designed to make the idividual who has been ill to feel part of the pack, when in reality you might think 'you havn't got the faintest idea'. This would be ok if people could deconstruct behaviour and reasemble it and place value on the components but they can't. What we now have is a pack statement that we all get depressed but no real understanding about the realities of this. In maintaining a status quo in the group it might be an idea to say I am feeling a little depressed from time to time, even if the trigger is the special offer of buy one get one free has been stopped at Tesco on their favorite coffee brand.

 

This is like sitting with an interpreter this is!!!

 

So you are saying that when I think people are not taking me seriously and I feel they are invalidating my experiences – they are really just performing some social dance to make me feel like one of them?

 

I always think people don’t care because they don’t see the effects of their judgements or of their generalisation of matters that are pretty serious. It makes me angry they don’t even try to understand.

 

The most rediculous example of this I have experienced is following a panic attack at work in front of a group of kids which resulted in me to be taken to hospital and being detained for monitoring. On returning the next day I was faced with this must be embarasing for you so we will make you feel part of the pack. The point was it was not embarassing it was a panick attack and I had worked out what the triggers were. In making me feel better I was told by a group of adults that they all had panick attacks from time to time and that was fine and not to worry about it and that I should try and be a bit more relaxed. I was thinking you should have told me that yesterday and that would have saved you the trouble of calling out an ambulance even though I told you it was a panick attack and not a herat attack and not to do so. The worst part of it because of this social discounting I do not feel they were any closer to understanding what a panick attack was and what might trigger them, insted a position had been reached where, we are all the same and that will make everything ok.

 

I’ve noticed a fair amount of “social discounting” myself – it just frustrates the hell out of me when it comes from people who I know for a fact do not have a clue what they are talking about – I don’t mind people making errors – I make enough myself – but there are minor and major errors and its the majorly blind and stupidly harmful ones that I don’t forgive very easily.

 

When it comes to what is fashionable and what is not I think the driving force is often the media. Darkshine I believe we have fashionable cycles in the media often generated by either lobbyists or individual journalists. To run a media story there needs to be a certain level of content available with which to back it up. At a more traditional level there was a strand of journalists who would work on an area for a month or so collecting information and interviewing individuals. In creating additional value this type of journalism works well in media groups who have multiple outputs so the work could be presented in different format in say the Sunday Timse and the News of the World because they were outputs from the same organisation. This approach to journalism has moved on into a new area and that is of the lobbyist. Here someone puts forward the case for running an article or peoducing a TV news segway. For a lot of charities raising awareness is a key concern and so investing in such activities has created an industry in its own right. So from a media perspective things can become fashionable for a period because their is easy content available.

 

It still seems stupid when it comes to certain problems/issues/conditions people have... I don’t see how people could even think they want certain things that are life destroying (even if only for a portion of life – some are big problems for people and making light of them is ridiculous). Maybe cuz I’ve spent so long wishing for a magic wand to fix things I understand how bad some things are and am not stupid enough to think I want to have those things in my life just cuz other people do.

 

We then have to look at how we respond as a society to information. When bird flu was a high profile media story how many common colds suddenly turned into this deadly strain of the flu virus. The answer of course is none, they were common colds after all, but in the minds of people? And I think there is an issue here for a charity raising awareness anout something such as Asperger's. Do a good job and that means for them get the Asperger's story into the media, this inevitably means more people will look at themselves and say I think these traits of mine might mean I have Asperger's. Put a positive slant on the condition to make it more acceptable to the general population such as 'there are highly intelligent individuals with Asperger's' and that can only increase the uptake of people considering the possibility. I ask a simple question here would the time and effort spent on raising media profiles not be better spent on providing more training to GP's?

 

In both cases do people really benefit from these sort of behavioural approaches I do not think they do Darkshine. What I tend to think is that as a pack behaviour they feel connected to something so that might be a help psychologically in the short term, but I do agree with you why you would want to make artificial connections to areas such as depression ans ASD beats me.

 

A few more thoughts.

 

I suppose your description is accurate enough – I cannot be bothered to sit and actually try to argue it – which would mean nitpicking to the extreme – but I don’t get how a pack mentality really works in those senses – I understand the gist of it – I know about group behaviour – but for the large part I don’t have a great deal of experience in it.

 

I also am not sure I understand how being connected to something in a false way can make people feel psychologically better. I can understand it when people delude themselves – but even with self-delusion I think to a degree people know an element of the truth...

 

The problem is this LancsLad...

 

When I am actually out and about and involved with people and things happen, I don’t understand them or why they are happening, I don’t have time in those situations to start analysing, and since I have more questions than answers it frustrates me.

 

I sometimes feel like I’m just an observer of life – I don’t feel involved in it.

 

And amongst other reasons – that is a pretty big part of why I don’t feel like I belong or I fit in – do you get that?

 

And if you do, how can I learn to understand new situations? Because even though you have given examples I am struggling to think of many more right now even though I know for a fact there’s thousands of examples – but because they aren’t happening right now I can’t think of them – which is frustrating.

 

How do you sit there and see it for what it is?

 

And how do you continue sitting there thinking you know about the stupid games they play and actually manage to carry on sitting there – or even agreeing to do it again?

 

Just a couple more thoughts

 

What we should do is a test - you (or other people) should come up with examples of social interactions like the ones in your post - and see what my interpretations are - the world according to Darkshine or something like that (I just finished The World According To Garp)

[Shnoing]

... Your are probably right my post sounds cliched, i tried not to sound like that and just be honest but i do have troubles getting my thougts out properly (if that makes any sense lol) so it was easier to stick to the problems i have that are probably a bit more commonly associated with the condition. ...

Considering the fact that there exist only two posts from the 28 april, I get the feeling that z. had a sudden idea and wanted to get some feedback to it. Idk how long it took z. to collect those points for the self-description, but I think that it seemed to be quite quick for someone who might have an ASD. Importantly: does it help to get a dx as an adult?

[darkshine]

Considering the fact that there exist only two posts from the 28 april, I get the feeling that z. had a sudden idea and wanted to get some feedback to it. Idk how long it took z. to collect those points for the self-description, but I think that it seemed to be quite quick for someone who might have an ASD. Importantly: does it help to get a dx as an adult?

 

That's an interesting question - it hasn't helped me that much - sure I have some words I can use now that explain things I couldn't before - but that isn't worth all that much to me - I still don't understand my diagnosis fully anyway because my parents and family refuse to acknowledge it and prevent me from understanding more about my life that I can't remember - but it wasn't much better not knowing what it was that made me feel this way - and then I come on here and there's certain things I say and ask and other people don't feel that way either.

 

Some people say that they feel relieved, I don't feel that way, now I just have a label that people can use against me.

 

I've spent over a year driving myself nuts learning about ASDs - for what? To speak yet another language people don't understand. It's just like proof that I'm weird. And as for the docs who diagnosed me - for all the use they've been they might as well not have bothered because they tell you what is "wrong" and then they say they can't help you. Then you find out that even though you want to learn and improve your quality of life and all that - in reality nothing has changed - its still me trying to work it all out by myself.

 

So its like, I didn't fit in with the "NT" world (and still don't) and now I don't fit in the "AS world" either - it makes me wonder where I belong, where I will fit in, where I might be accepted.... if it wasn't so depressing it would be funny.

 

Then again I'm feeling kinda low right now, so that might be coming across in my highly pessimistic and negative reply...

 

Regards

 

Darkshine

[Shnoing]

... So its like, I didn't fit in with the "NT" world (and still don't) and now I don't fit in the "AS world" either - it makes me wonder where I belong, where I will fit in, where I might be accepted....

I think that I fit "well enough" in the online AS world, even if there are some differences I still feel there's enough "common ground". In RL there are no real "meeting points" - apart from being a parent of an autistic child - so it's still a non-issue in the neighbourhood and in the wider family,e.g.

[darkshine]

Yes, at least online - people can "meet up" easier in a virtual sort of way - and there's more people too, so possibly more chance of finding people you like or whatever - finding common ground seems easier, in "RL" I know nobody with AS at all, so the online aspect of talking to people is really useful.

[indiscreet]

Over the years before I was diagnosed (before I'd even heard of autism/AS) I had a number of periods of counselling because of depression, anxiety and a general feeling of dispair at being until to "fit in", although I'd always managed to work and had a partner. Although it was comforting to visit a therapist once a week I never felt that they were able to help much. CTT did a little but the effect didn't last. One of the reasons why I sought a diagnosis was that I hoped that if I subsequently needed counselling then the therapist knowing that I am on the spectrum might make it more productive. To date I've managed without needing further help so I don't know if that would be the case.

 

My feeling is that if someone like the OP feels that they may be on the spectrum then they should go ahead and see if they can be tested. It's not easy for adults to get past the first hurdle represented by the GP but if they do manage to get a consultation with a specialist then at least they will have confirmation one way or another.

 

How you subsequently regard the dx - either positively or negatively - will have a great deal to do with your life at the present time; how old you are, whether you work, if you have a partner and maybe children, your position on the spectrum and your upbringing - whether or not you had (or do have) supportive parents - plus your own personality and basic intelligence.

 

The fact is that autism is a very new condition and in 20 years time (or maybe 10) there could well be a very different way of dealing with it, especially if it's possible to determine the severity in individual cases by, say, brain scans rather than the present testing of individuals.

[darkshine]

Wise words indiscreet

 

Now all we need is major advancements in thinking and practice - and methods for people to progress and develop - when I read what you say I realise that I lack things that it seems to me, that a few more years (or several) of a person's life can make a big difference in the way we look at things.

 

There's a few people on here that I read what they have to say and I think - even though I am scared of getting older - I wish I was ten or twenty years older and past this agonising stage I'm in where everything is - I don't know - but it's less balanced in many ways - maturity is the key to this I think - and not in a sense of having mature and immature on a black white scale - in a way where it's just being in different phases in life, phases that I haven't got to yet you know? I lack something that only experience will provide - and experience takes time.

 

But I see this as much as I see younger members going through things like what I went through at that age and I think to myself , well, if I was like this, and now I'm not, and other people are in better places in terms of thinking and stuff - well maybe I can get there too one day - hope is not a thing to underestimate I think.

 

Just my thoughts