Jump to content
Sa Skimrande

The Danger of Late Diagnosis

Recommended Posts

Having been late diagnosed at age 42, when I received the reason for my known failures I was elated, then came buying into the diagnosis through researching this thing and then came I am limited by the diagnosis and everything I used to be able to do fills me with terror and the inevitable avoidance techniques.

 

Yes, I have come to the realisation that late diagnosis of ASD is actually damaging to one's working life as for sure the job centre's know full well employers don't want ASD workers so they can't help despite a past work record of experience in many different fields of work, it is as if the past is irrelevant with the ASD label.

 

But myself, this buying in to a diagnosis that does not reward I recognise as a problem and as I try to work through getting out of the mindset this diagnosis has created, I warn others what this thing can do.

 

The job centre erstwhile called the joke centre to most I am as a result of ATOS respondent to them as to the idea of getting back to work, they are very helpful in that they are unhelpful and the latter not through their inability but because of known attitudes in the employment sector, with ASD they sympathise, but as to getting a job through them they say really they can't help and so my only option is self employment in whatever I can find to do.

 

And so to self employment, I have two options, two things that I can do and be self employed with but there is a problem for I have recognised I need a boss of sorts, perhaps even a business mentor for one of my ASD characteristics is I need to please and if I don't please or I receive no critique I lose interest and become very stubborn to the point of self destructive.

 

What I can do the skills I have , I am self taught, one was the result of a hobby and the other was the result of an inquiring mind which kept on seeking more and more information for I always was a tinker'er in things mechanical. The former well I have always been attracted to metalworking and it was years ago when I finished school in the mid 1980's my desire was a metal working apprenticeship but the mid 1980's was when industry died in the UK so apprenticeships where they still existed went to family members of existing employees, many of whom were not interested but employment in those times doing something one was not interested in was better than no job. As it is of all those I knew who through their family got apprenticeships not one of them is anything to do with the trades today, they got out as soon as they could.

 

So I have it two things I can do and do well, were part of me knows I can excel, but there is a strong negativity around me where I do and have always done, I have undervalued by abilities which has lead to naturally excelling in jobs far below my abilities, but that was pre ASD diagnosis, now I struggle to believe in myself and this I know is the ASD negativity acting as to face it adults with this thing there is not a great deal of positive thought around is there ?

 

So after all the above useless blurb, perhaps me trying to organise my thoughts, I hope to warn those seeking diagnosis, but something else I cannot quite put my finger on is a need I have I wish to know is there any provision for, though I expect not, but will inquire just the same, is there any business help/mentorship available for those with mild leaning difficulties or ASD in getting back to work and staying in work ?

 

You see, I have a work place, I have the majority of the tools, I have the skills and have identified several different markets to serve, all fringe markets, but markets where traditional industry does not go and people that wish to purchase can't be satisfied, basically markets with little competition and I have surveyed the need within those markets by being involved with them, but I seem unable, I seem unable and perhaps this thing is common to those with ASD, as I have heard it mentioned before, but I seem ;

 

Unable to join the dots.

Share this post


Link to post
Share on other sites

I am considering going for a formal diagnosis, but only for the reason of being able to take part in research. I don't see why having an official label would make a difference to my mindset as I already believe/know I have AS. Trying to disseminate what is caused by this condition directly or indirectly is tricky. Having knowledge of it will alter my future actions I'm sure, even now I am feeling less secretive. I knew that something was wrong, but not knowing what, or even having the language to explain it, lead to avoidance and secrecy.

 

Diagnosed or not, I am pretty unemployable.

 

 

And so to self employment, I have two options, two things that I can do and be self employed with but there is a problem for I have recognised I need a boss of sorts, perhaps even a business mentor for one of my ASD characteristics is I need to please and if I don't please or I receive no critique I lose interest and become very stubborn to the point of self destructive.

 

I've been self employed since I walked out of my last job aged 22. I am fortunate that I can use my obsession, so I love my work., and the reward is the work itself. Obviously without customers, I wouldn't survive, so although I am self employed, the customer is the ultimate boss, and if the customer is pleased then so am I. Stubborness is a pre requisite, but must be used positively. It is not an easy path but it is my own.

 

I have to ask you, what is stopping you from picking up your tools just to make something for yourself?

 

Feel free to send a PM

Share this post


Link to post
Share on other sites

Hi Ska

 

Have you spoken to Prospects at the NAS? Obviously, legally no-one should discriminate against you, and they should make reasonable adjustments - but I'm sure you know that, and that in practice people are often governed by their prejudices, which is a shame.

 

Another question I would ask is whether it is up to you to decide to disclose your diagnosis or not? Or do the Job (Joke?) Centre people insist on doing it for you?

 

You sound like you have a lot of ability and a lot of skill and I hope you find a way to support yourself with them.

 

Best wishes,

Joanne

Share this post


Link to post
Share on other sites

I have to ask you, what is stopping you from picking up your tools just to make something for yourself?

 

I apologise Sa Skimrande, I have just read on another thread, that you are nearly half way through a major project for yourself.

Share this post


Link to post
Share on other sites

The problem I feel most at the moment is actually getting out of the house as I admit, I have become reclusive and that to conserve costs and not doing anything in particular I can make my food stores last as I regularly omit to eat on a daily basis.

 

 

I can make for myself and the desire is to do so, and even see working on a personal project as a springboard into working to sell as it is all in the mindset, but every time I try to sit down to make for myself in floods the panic that I should not be making for myself but I should be making to sell and that then becomes the end of my sitting down to work on a personal project as the panic reigns supreme where depression follows soon after.

 

Yes I know it is a cyclic thinking process that bears on negativity, it is just something I have got into and can't seem to find my way out as to be perfectly honest and fair, there isn't any professional help for adults with such issues is there.

 

Then as in the comparative warmth of where I live most of the time under the duvet with no heating I think about the workplace I have for free until I start earning, no running water, no toilet facilities and no heating. It is a seventeenth century smithy but because of the cost and difficulty in obtaining the fuel the fire is not lit every day and I do suffer big issues with the cold to the point I cannot feel my feet from the ankles down and my hands become unresponsive, yes, Raynauds. Further health issues I know but I have to work through them as medical diagnosi doesn't help put food on the table diagnosi actually hinders.

 

Not only is warmth or lack there of an issue so is transport, my place of work is six miles away where it takes two buses to get there and I do not qualify for reduced faires. There is my car of course, but it is most often without fuel as a petrol motivated engine, fuel is too expensive.

 

But there I am in reality if I just go for it and not consider my costs or comfort, I will be trying to get in the mind to start a business by using what I can afford of my meagre benefits allowance, an allowance that does not cover much beyond the absolute basics never mind start a business.

 

But I have done this before, last winter where I was financially more able but I lasted two months before the cold got to me and I could not find any skill in using the hand tools I was forced to use through not having any machinery as to understand making by hand is labour intensive and takes a lot of time and what one can sell the product for, does not provide any sense of as a business this is going to work, for I was forced to price at below minimum wage just to sell the products in a cash strapped economy.

 

So in conclusion the result of last winter's attempts left me financially worse off and knowledgeable that what I can do with what I have got is not enough to make a living, not when I live in a house and have to pay ever increasing energy bills and at some point you know like eat and have some reason to keep working.

 

Last year I did approach the business start up parasites and yes I did all of their seminars at my own expense and came out of it with nothing, except understanding my tax obligation. The financial award of £500 for attending never materialised and I got a lot of negativity from my personal advisor who believed I could not create a living for myself because I was an aspie. That same advisor pursued me through out this past year wanting to talk again my at last understanding they need us to have a contract with the government but I was not prepared to be raised up and smashed down again by their abusive mentality, as to remember and I reminded the advisor, I am an aspie so where has anything changed since last year?

 

I dwell in negativity as since I have been diagnosed with this thing that is all I have experienced, the needs I have go on as there is no help for adult aspies beyond anti depressant medication that really achieves little and is in fact just a sticking plaster treating a wound that will not heal.

Edited by Sa Skimrande

Share this post


Link to post
Share on other sites

Hi,

 

this was interesting reading. I just joined the forum today, became unemployed last week and have only in past few weeks come to the conclusion that Aspergers has some relevance to my life and why it often feels like I am so often crashing. I thought about pursuing a diagnosis but I think I will probably not. I understand myself a little better after a week's reflection on past disasters and the number of traits I possess that are linked to Aspergers. Enough said. I need to find employment again but this time one that is suited to the *real* me not the one I wish to project or imitate. I have coped on and off for 26 years and my CV looks like an encyclopaedia of jobs but I will not allow myself to be written (even by myself).

 

Thank you for your advice. I will take heed.

 

Gary

Share this post


Link to post
Share on other sites

I think you have answered the question about the Smithy for yourself, it is not a place to be in the winter. Like farmers or fishermen you need to adjust the work to suit the seasons.

 

Can you work on smaller items at home?

 

When I was living in a bedsit, I had a table which was sacrosanct just for my work. I kept it spotless amongst the chaos of the rest of the room. When I was at that table and working I was oblivious to anything around me. Within that small framework I was organised, efficient and happy, the outside world was just a noise. I started by mending something for a friend, no way was I making a living from it at that time, just scraping by. There was no game plan, just a day to day existence, but slowly word got around and I'm still at it today, but now I have my own workspace. There is still no game plan, just a stronger self confidence in my own survival instincts.

 

I dwell in negativity as since I have been diagnosed with this thing that is all I have experienced, the needs I have go on as there is no help for adult aspies beyond anti depressant medication that really achieves little and is in fact just a sticking plaster treating a wound that will not heal.

 

I have been through periods of serious depression, when it gets to the point of debilitation where I cannot work, the fear of losing everything I have is enough to force me to the GP for anti depressants. It is a short term fix, but enough to kick start me into action again. Over time these depressive spells have decreased.

 

Back to the diagnosis question, after the initial elation which I also felt, I am still the same person, but it has opened a Pandoras box, with even more unanswered questions. There is ongoing medical research, today's theory could be changed by some unexpected observation tomorrow. Lots of examples are given of aspie traits, but these are a very limited range which get used over and over again. I don't walk on tiptoes flapping my hands, and I'm not going to start just because that's what some aspies do. I have my own stims, I had always thought of them as bad habits, and in no way had I considered any of them to be self harm. What I am trying to say here is, a diagnosis can't limit you.

 

If you are feeling depressed to start with, the extra thought load could make things worse. I'm feeling shaky/excited at the same time as frightened/wary, but I'm not finding it is stopping me doing things I could do before.

 

The NHS is more focussed on children because they are the future, and if something can be done to help them, as an adult I am happy to take second place. I have made it thus far without the knowledge, but it is opening up a whole new way of looking at things.

Edited by raydon

Share this post


Link to post
Share on other sites

I think a late diagnosis can be really hard simply because so much water has passed under the bridge, there was in my experience a lot of stuff to reflect on, and if we are not careful it can become a distraction.

 

To address one general point there is very little if any help out there. I was fortunate to get some support at the point of diagnosis simply because I was a mature student at the time so a big thanks goes out to The University of Sheffield's services there from me. When I returned home and saw my GP who looked blankly at me at the mention of AS the answer which followed was sorry but there is nothing for someone in your position.

 

This does not surprise me in a way because as a foster carer I have worked with people age 17 moving them out of care and in adult life scenarios. Unfortunately there are dividing lines here and I don't think an Asperger's diagnosis and support is any different to other social situation, those two lines are more or less at 18 and 24, beyond that forget it. In a way I got support at university because I was pretending to be a 23 year old but they use the term student in respect to provision.

 

If I have a concern about the ASD community as a whole and organisations such as the NAS the focus seems to be very much pre 18 and is now just starting to face up to pre 24 as the 'core' community grows. Whilst that viewpoint might be valid it is from but one perspective and it is not reflective of the bigger picture, the 'fringe' is getting bigger and bigger by the day. I suspect many of the older members might find it quite hard to read posts from parents about the nature of core provision their 8 year old is getting at school and issues they are facing because things are not as how they would want them. I also have an 8 year old an might feel the same way. But I would say to those parental members, for many of us we get nothing or very little. For some of the younger adults on the forum bear in mind life will not be the same forever, you likewise get core support but it will not last. Many of us have to deal with this condition and it does feel like living on the 'fringe'.

 

In response to previous posts it took me some time post diagnosis to simply accept my life had been what it was. I couldn't go back and change parenting, school, relationships, work experiences etc... I hadn't been dishonest at any point and as such I had not lived a fraudulent life simply because I had not found out I had a condition called Asperger's. It was important that in looking back I simply did so that I might better understand myself in respect to looking forwards. The diagnosis was about learn some lessons and move on, not dwell on the past and feel disempowered. In life I had always tried my best and if that was good enough for others so be it, if it wasn't well I tried my best what more could I have done. And I believe we have to think like that otherwise we run the danger of becoming a victim of the diagnostic process.

 

At a personal level the most significant aspect of my diagnosis was an understanding not of what I was good at and what I wasn't good at. Rather it was about understanding what elements of my life gave me comfort and security and which ones were focused on providing benefits to others. In that respect I made the decision to look after my own interests for the time being at least. I am fortunate that I have a pension and so there is a level of security in that position though it is marginal when it comes to bills and stuff like that. Once I made that decision it was important that I committed to it and didn't engage in emotional games of comparing my lifestyle with others. If I do things differently I do so for a reason, not because I have no choice, rather because I do!

 

Because the nature of my autistic side has been a factor in that decision making process it sits reasonably comfortably within it. As such I can confidently say this is the most comfortable I have ever felt in my life. Some people might look at my profile and say surely you would want to go back because there were points in your life which were highly productive and successful, my answer would be no I don't I am happy where I am now. Some might take it a stage further and say but because you now know about AS you could do things differently and be even more successful again my answer would be I can't do that and even if I could the answer is no I am happy where I am now.

 

For sure it is like living on the 'fringe' of society, but I reckon the fringe is a pretty cool place to be. In fact when I look back on my life I have been on the fringe for a lot of, it was the times I wanted to get closer to mainstream thinking and beliefs is where I got into the most trouble.

 

I know life situations can be difficult and security, or social fit, acceptance, things like that can be elusive even more so as we get older. But being true to ourselves is more important and with strong self-esteem we can go a long way on our personal journeys. Again I will say comparing yourself to others is the easiest way to destroy self-esteem. I have always tried to do my best and be the best person I can be, if I work on that every day then I can look myself in the mirror and can find the strength to face tomorrow.

 

Getting a diagnosis later in life can be very difficult but I found it to be very liberating for me though there was a lot of reflection about stuff which was not easy. Just because we have AS doesn't mean we can't dream like everyone else, it doesn't make us second class in that sense or any other to be honest. It just means we might do things a bit differently and for me that is living a slightly unconventional life and following my dreams. So days are hard and some days are really hard but if we know what direction we are going in we at least know we are making progress.

Share this post


Link to post
Share on other sites

Yet one does feel they become second class when it comes to such things as applying for a job as honesty is something from my experience most aspies have to be as lying comes hard, so when a potential employer asks is there anything else which might affect your employment and you reply no and later it is found out you can be a difficult SOB you are out on your ear with most and others that seek to understand that do find you are an aspie then trott out the any other reason why etc, for I have experienced that one and although I did not lose my job I also did not progress beyond my position whereas those below me became my superiors and still relied on me to bring home the bacon as I was still the best technical mind and that has been the only thing in all the jobs I have done where I have been kept despite being a complete pain in the ass to the employer. But now jobless I can't lie if asked and the job centre know this, that is why they have said what they have said, no employer will be interested in anyone with an aspie diagnosis no matter how mild it is.

 

As to comparisons between myself and others, my ex wife did it to me and so it has become ingrained, I am flawed as she never forgot why could I not be like everyone else, my father, her ex's someone down the street etc.

 

I live in perpetual negativity, since '92 it has been my lot in life a feeling of inferiority and everything I managed to get I did so by the skin of my teeth and that is how I live expecting nothing lost in my own world of memories and negativity.

 

Oh sure just drop the past and start thinking positively, does anyone have the slightest inkling of how that can be done, because I have tried everything and I cannot shed the past, sure I have had spells of positivity, but it never lasts as to keep that positivity the mind has to be acutely focused and does anyone grasp how hard that is to maintain for mindfulness I keep practicing but it does not last for long, the slightest distraction I am again following familiar paths.

 

And there is no help as has already been discussed.

 

And so to what I can do myself, doing it is the easy bit once doing it I can focus, but it is the getting to doing it in the first place that I have the problem with as although I know once I am engaged I will excel, but the mountain seems to be the getting to doing something as if I am scared of excelling.

 

I know it is this ;

 

Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us.' We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There's nothing enlightened about shrinking so that other people won't feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It's not just in some of us; it's in everyone. And as we let our own light shine, we unconsciously give others permission to do the same. As we're liberated from our own fear, our presence automatically liberates others. ~ Marianne Williamson

 

But I cannot break the cycle, I have been trying for the last seven years and I have tried everything

Share this post


Link to post
Share on other sites

I am not stupid to believe I have any answers rather only my personal experience. What I can say is I find my ability to design, and importantly design the things that I am interested in of a great comfort to me. Within that context I think I understand the Marianne Williamson quote, and I think why should I design in that way, and then as she rightly puts it why shouldn't I, it is after all a way of expressing the 'me' that is inside.

 

Trying to get in touch with that side is a very difficult thing. I think with work many of us kind of touch it but when we do we are reliant on direction from the employer through them giving us tasks. Without that direction I fully understand that some people find motivation to be a major obstacle. You sum this up well when you say that once you get doing something it is easy to focus. Personally i can find purpose through a 'cause' and that cause is sustainable environmental and social design. At times if I can't design for myself I will design for the cause, and because I design for free I am able to explore anything I wish and there can be no real negative value judgements because what I produce is a bonus in a way because it is not tied into any form of social contract rather it is an arangement between myself and a cause I believe in.

 

All I can say is keep trying to find those elements in your life, it is not easy, and I am not going to say I had it hard or not, I just had it the way it came, and I managed to work out a life position. Sometimes we just have to pick ourselves up brush ourselves down and try another way, the ability to do so is a quality we have to develop if we are to find the answers because they don't come gift wrapped very often, if at all.

Share this post


Link to post
Share on other sites

If I have a concern about the ASD community as a whole and organisations such as the NAS the focus seems to be very much pre 18 and is now just starting to face up to pre 24 as the 'core' community grows. Whilst that viewpoint might be valid it is from but one perspective and it is not reflective of the bigger picture, the 'fringe' is getting bigger and bigger by the day. I suspect many of the older members might find it quite hard to read posts from parents about the nature of core provision their 8 year old is getting at school and issues they are facing because things are not as how they would want them. I also have an 8 year old an might feel the same way. But I would say to those parental members, for many of us we get nothing or very little. For some of the younger adults on the forum bear in mind life will not be the same forever, you likewise get core support but it will not last. Many of us have to deal with this condition and it does feel like living on the 'fringe'.[/color][/font][/size]

 

That is so true but it's something that doesn't get addressed. At least those who were diagnosed when young had the benefit of that 'core support' but those of us diagnosed in adulthood get nothing - just an encouraging smile and the words "But you've done so well in dealing with the condition, no one would know you have AS." Maybe, but because I've learned to act/behave 'normally' doesn't mean that life in many ways remains a constant struggle.

 

 

Share this post


Link to post
Share on other sites

I have recently been diagnosed as being austistic.

I was on Incapacity Benefit and I went to ATOS and I am now on Jobseekers Allowance. I am in the work related group. I have had an interview at the Job Centre and I think that the lady who I met got a realistic read on my prospects of employment. I've been out of work for a long long time and now I'm supposed to become part of Hamilton and Osbourne's solution to the debt crisis. I' m very anxious. The government talks about getting me into employment and wealth creation and is doing nothing about getting me into work. I suspect that they care more about cutting costs than employment for the disabled. I've heard stories about a soldier who'd just had his leg amputated being assessed by ATOS as fit for work. [Excuse the Chinese whisper effect.] If ATOS treats an amputee like this what chance to I have. I'm just a 'wierdo'. I don't have an obvious defect. If I have an able body, I'm expected to have an able mind. I suspect the coalition's agenda. It's about spending as little as possible, not about geting me a job. Investment? I'm a long, long way from starting my own business.

I am responsible for my own life, like pussy stuck down a well.

Share this post


Link to post
Share on other sites
...

I dwell in negativity as since I have been diagnosed with this thing that is all I have experienced, the needs I have go on as there is no help for adult aspies beyond anti depressant medication that really achieves little and is in fact just a sticking plaster treating a wound that will not heal.

I, for one, have found these forums only because of my son's dx (which preceded mine >1 year) and I think it's good to read that you're not the only one with weird problems.

(Btw, my dx was within a research project, so it's still confidential; I'm still employed, too).

 

I think that a late dx helps when you look back onto your life, but I doubt (as you do, too) how it might help when you look into the future ... which atm is more my son's problem, and mine as a parent.

Share this post


Link to post
Share on other sites

I came to this as I came out of a nervous break down where I was trying to find out what I was to cause such a break down in order to avoid the same in future, me being one in order to understand what is faulty I have to rip problems down to their basics in order to understand and take it from there. I now have my answers but there is another problem now, faced with the cold hard facts, I have lost all belief in anything else and so with belief gone, I struggle to move forward as I think, what is the point.

Share this post


Link to post
Share on other sites

As I understood it, your dx is pretty recent, so let me tell you that I needed a bit more than a year (but not much more!) to "come to terms" whith these new informations about myself. At first, I only saw the dx when I looked at myself, but later I learned (again) to see myself foremost as an individual, with some quirks, maybe, but not as a label.

 

I think you have to allow yourself a phase of "grief" before you return to "normal" life.

Share this post


Link to post
Share on other sites

As I understood it, your dx is pretty recent, so let me tell you that I needed a bit more than a year (but not much more!) to "come to terms" whith these new informations about myself. At first, I only saw the dx when I looked at myself, but later I learned (again) to see myself foremost as an individual, with some quirks, maybe, but not as a label.

 

I think you have to allow yourself a phase of "grief" before you return to "normal" life.

I remain undiagnosed and possibly always will be but this too has been my experience. There definitely has been a grief period of at least this long but I've now come out the other side and can see more of my strengths than my weaknesses. The upside of this is that I also see more of my son's strengths than his weaknesses now. It makes for an easier life all round to focus on the positives and not the negatives. You know what? I'm still standing and I'm a stronger person for having had to cope with this very difficult year and I am starting to not give a monkeys if the 'professionals' see it or not. I'm off to see my (diagnosed Aspie) pal tomorrow and we'll have a gab and a laugh and I'm going to meet her two (diagnosed Aspie) girls tomorrow and we'll have a perfectly 'normal' Aspie day :)

Share this post


Link to post
Share on other sites

As I understood it, your dx is pretty recent, so let me tell you that I needed a bit more than a year (but not much more!) to "come to terms" whith these new informations about myself. At first, I only saw the dx when I looked at myself, but later I learned (again) to see myself foremost as an individual, with some quirks, maybe, but not as a label.

 

I think you have to allow yourself a phase of "grief" before you return to "normal" life.

 

Two years I have had the diagnosis and now a diagnosis of KS and so I wonder how much of me is KS and how much is AS given the fact that there are similarities in the difficulties experienced by the two, but with the suggestion of a possible link between KS and AS, well, experts may disagree because my suspicion is not scientific, but maybe it is what KS experience in some cases is AS and the two are linked enough to be one in the same, but I don't fit the criteria regards intelligence levels for KS because my intelligence I have been told is very high, top thirty percent at least, although it does not feel like that most of the time with the amount of screw ups I make, but they are always people issues where I know I am not at my best, but with KS there is a definitive test obtained via a blood sample whereas AS is just someone's opinion.

 

But grief, I cannot afford, I am under very real pressure to get a job as living on benefits is a slow death and I am on my own, single with no family within 300 miles and friends who are quickly but surely distancing themselves from me and I have lost my confidence in anything I used to be able to do, even my arts

 

Many people have called me a survivor, because no matter what happens, I always survive, but they don't know at what cost my survival comes, because each time I survive a situation that would have friends with more resources available to them scurrying for authoritative help or wealthy parents, a chunk of me is bashed away and I become more and more cynical, I can't help the cynicism, it is what comes with trying to survive in a society that says it cares but in reality I have not found it not to be the case, what with so many 'professionals' who are about as much use as a chocolate tea pot when it comes down to the nitty gritty. Of all I have seen and tried to access since my diagnosis only the mental health charity; MIND I have any respect for, all of them volunteers, NAS, who are they, for they aren't interested I am too old.

Edited by Sa Skimrande

Share this post


Link to post
Share on other sites

I remain undiagnosed and possibly always will be but this too has been my experience. There definitely has been a grief period of at least this long but I've now come out the other side and can see more of my strengths than my weaknesses. The upside of this is that I also see more of my son's strengths than his weaknesses now. It makes for an easier life all round to focus on the positives and not the negatives. You know what? I'm still standing and I'm a stronger person for having had to cope with this very difficult year and I am starting to not give a monkeys if the 'professionals' see it or not. I'm off to see my (diagnosed Aspie) pal tomorrow and we'll have a gab and a laugh and I'm going to meet her two (diagnosed Aspie) girls tomorrow and we'll have a perfectly 'normal' Aspie day :)

 

Makes me so happy reading that. :clap:

Edited by raydon

Share this post


Link to post
Share on other sites

... But grief, I cannot afford, I am under very real pressure to get a job as living on benefits is a slow death and I am on my own, single with no family within 300 miles and friends who are quickly but surely distancing themselves from me and I have lost my confidence in anything I used to be able to do, even my arts ...

Unfortunately, that's right: while being in a stressful situation you cannot grieve as you should be able to. Does your health system offer some kind of time-out, e.g. therapy for "burn-out". That might be a start.

You mentioned KS but I found three possible meanings: Kartagener, Klinefelter, and Kawasaki.

Still, I believ that you are an individual, and not an assortment of syndromes.

Share this post


Link to post
Share on other sites

Unfortunately, that's right: while being in a stressful situation you cannot grieve as you should be able to. Does your health system offer some kind of time-out, e.g. therapy for "burn-out". That might be a start.

You mentioned KS but I found three possible meanings: Kartagener, Klinefelter, and Kawasaki.

Still, I believ that you are an individual, and not an assortment of syndromes.

 

Oh yes, I am an individual alright, a veritable oddball to many and I have had it said to me most around here refer to me as the oddball, friendly but weird, as to face it I see no problem in the fact I go belly dancing, but every other male when they find that out and I am not secretive about it, it is recoil in horror, why would I want to do that, then there is my dress sense where I am under threat of being dissociated with if I dare go down to my local pub wearing my Utilikilt and tight lacing leather corset, but I have been down there in chain mail before and it is safe to say i like adventurous modes of dress, although I should be able to get away with the corset now given the Steam Punk fashion is abound and of course I like.

 

But my health service offers little and as far as I know, I know because I have asked on a few occasions but heard there's not the funding or it's over subscribed or it goes to priority cases and so many other excuses, even a course of six sessions of CBT I am on a waiting list that is four months long so far for six sessions.

 

KS is Klinefelters, through having an extra chromosome to make XXY which some consider to be an intersex condition, which could explain some of my tastes maybe.

Share this post


Link to post
Share on other sites

i feel even wrong replying to this subject topic to be quite honest as feel like fraud cheat when see some of late ages people have been officially discovered diagnosed and got answers in loose meaning of the world after all them years am i right in that statment made or wrong!! I was offically diagnosed in my early teens which can be where starts really show its ugly head and rise unless spotted real early in childhood but i feel lucky t of some life experiences on here truly heartbreaking tragic that had to wait whole life time to find some true meaning understanding of youselves and your life! So grateful i was found when i was as many still out there who dont know still yet!o spotted when i did when heard

Share this post


Link to post
Share on other sites

my late diagnosis did cause lot mix emotions rollercoaster of them including happiness at start followed by depression anger sadness as felt missed out on so much not only service/intervention wise elt robbed but also the knowledge and understanding was missing and negatively impacted on me in many ways as a child blaming questioning myself! Which had deep knock on effect to already low aelf eateem! growing up so not good in more ways than one was so frustrating feeling something not quite right doesnt fit in with others around you and not really knowing why or having right answers to throw back! ;c

Share this post


Link to post
Share on other sites

i feel even wrong replying to this subject topic to be quite honest as feel like fraud cheat when see some of late ages people have been officially discovered diagnosed and got answers in loose meaning of the world after all them years am i right in that statment made or wrong!! I was offically diagnosed in my early teens which can be where starts really show its ugly head and rise unless spotted real early in childhood but i feel lucky t of some life experiences on here truly heartbreaking tragic that had to wait whole life time to find some true meaning understanding of youselves and your life! So grateful i was found when i was as many still out there who dont know still yet!o spotted when i did when heard

 

I think for you to come on here and stated that, it shows you are at least thinking what life must be like for others as for whether you are right or wrong in this case you are right for it has inspired me to comment. But as I have said elsewhere although us late diagnosed are at a disadvantage in the lack of recognition and care we get, you on the other hand are also disadvantaged, because you are going to find out what adult life with this thing is like and for the fact that you have been treated differently as a teen with it you will have a different experience than your contemporaries. Who knows though for what you have received maybe it is you know your boundaries where the NT of your age does not and maybe through knowing your boundaries you will do better in adult hood than the NT your age. Can you see, this is a big experiment, as to whether the results of this experiment will be heard above the industry that exists to dumb down the ASD mind and create the public perception is another matter, but make no doubts about it curious minds are watching and thinking.

 

 

You know sometimes I think of the world we have created what with all the different diagnosi the people with it are captives in a zoo where we are kept reasonably comfortable by our keepers but everyone else that is interested in the differences that exist in humanity are looking at us through the bars of the cages.

Share this post


Link to post
Share on other sites

... But my health service offers little and as far as I know, I know because I have asked on a few occasions but heard there's not the funding or it's over subscribed or it goes to priority cases and so many other excuses, even a course of six sessions of CBT I am on a waiting list that is four months long so far for six sessions. ...

Perhaps you should visit your local health service office wearing your chain mail to make clear that YOU are a priority case.

Share this post


Link to post
Share on other sites

health service/support is almost non existant.i get a smidge of help from the mental\ health teem who know i'm not looney,but you can see it on their little faces ,wishimg had a 'mental' illness.now that would open any help up easier.end of the day,be gratefull you can walk,and remember the nhs is under the delusion that asd etc is a 'mental' in 'the mind/perception' problem.....'treatable' with mind drugs.and they are mostly unaware that diet and enviroment play a crucial role.seems a lot of the drugs are about normalising an asd'rs behaviour for the benefit of their families.

NHS intervention can often prove fatal.....with little resources and knowledgbase they dump asd'rs on lock up mental health wards.......resulting in more suffering and misunderstanding......

Personally i think it's a biologicall war,like racism. we will be tolerated,as long as the nt's can dictate to us and be marvelled by our sentinent cretive bomkerness in many areas of culture and industry...and as long as we socially behave and don't have any eppys in shopping centres or use violent languauge)l......but the nhs is a no no......a` cornocopia of multi coloured drugs...each one based on promises.in desperation its easy to find yourself having a much harder time with sleep/mood/awareness when your body is adjusting to masses of neuro chemicals from the nhs........

'm 50 next month,diagniosis over 2 years ago,lifes been hard,yeah yeah but I realise that if I'd been diagnosed at 13,when i was dumped in care,then my life could have been made far worse by proffesionals,and family who would of easily filled me full of pills and tried to turn me into a great mathematician,musical prodigy etc with a deluded and incomplete awareness of asd.

Share this post


Link to post
Share on other sites

Perhaps you should visit your local health service office wearing your chain mail to make clear that YOU are a priority case.

 

Don't laugh, my old steel ringed shirt, I used to wear under my coat on a daily basis as was the fear I had due to PTSD issues, following an attempt on my life where I had failed to correctly assess a situation and got beat up for it, three broken ribs and head injuries, I was very scared of people for a good few years, the armour gave a bit of confidence when I had to go out into the population and especially where my councillor was, down the rough end of town where it is known for muggings involving sharp pointy implements, steel mail would stop a sharp pointy implement no problem, giving me time to brain the scrote, as I will not suffer what I did again, it took too long to come back.

Edited by Sa Skimrande

Share this post


Link to post
Share on other sites

I find correct assessment of situations difficult. I've avoided broken ribs and head injuries, but I've had many sickening scares. As I am too terrified to brain scrotes, I tend to avoid them, if I can. It's no use arguing with a madman.

Share this post


Link to post
Share on other sites

I'm trying to be positive about my diagnosis, however late it is, but there are times when I can't help but think what life might have been like if I'd had a diagnosis when I was younger. That said, I don't suppose it's been around as a diagnosis long enough for it to have made any difference to me at school / college etc.

 

I guess there is some grief / sadness etc that perhaps I'd not have had to experience some of the rubbish times at work etc that I have but on the other hand I can look at my life and think, 'wow, I got through it all' and without even knowing what was going on. Things can only get better right!?! ;)

Share this post


Link to post
Share on other sites

I think it is an evolving science and as time goes on I'm sure there will be new revelations as to what AS actually is. Having a diagnosis now or then just leads to different strategies of coping. The greatest difference, to my mind, is mass instant communication, which has opened up a huge debate. Having the tag AS doesn't really say that much about you, but I think it is a good base to start a rediscovery from.

 

You've made it so far and you've done it your way, that has to be a major achievement, whatever failures and pain you've suffered, and from that comes strength.

 

For me having realised I have the condition has allowed a lot of pieces fall into place, but has opened up many more questions. Coping strategies have become so automatic, that I am going to find it hard to change them, also deciding what I want to change is another challenge.

 

I think if you can stay positive, for most of the time at least, and keep it real, then things will get better,

Share this post


Link to post
Share on other sites

Having been late diagnosed at age 42, when I received the reason for my known failures I was elated, then came buying into the diagnosis through researching this thing and then came I am limited by the diagnosis and everything I used to be able to do fills me with terror and the inevitable avoidance techniques.

 

Yes, I have come to the realisation that late diagnosis of ASD is actually damaging to one's working life as for sure the job centre's know full well employers don't want ASD workers so they can't help despite a past work record of experience in many different fields of work, it is as if the past is irrelevant with the ASD label.

 

But myself, this buying in to a diagnosis that does not reward I recognise as a problem and as I try to work through getting out of the mindset this diagnosis has created, I warn others what this thing can do.

 

The job centre erstwhile called the joke centre to most I am as a result of ATOS respondent to them as to the idea of getting back to work, they are very helpful in that they are unhelpful and the latter not through their inability but because of known attitudes in the employment sector, with ASD they sympathise, but as to getting a job through them they say really they can't help and so my only option is self employment in whatever I can find to do.

 

And so to self employment, I have two options, two things that I can do and be self employed with but there is a problem for I have recognised I need a boss of sorts, perhaps even a business mentor for one of my ASD characteristics is I need to please and if I don't please or I receive no critique I lose interest and become very stubborn to the point of self destructive.

 

What I can do the skills I have , I am self taught, one was the result of a hobby and the other was the result of an inquiring mind which kept on seeking more and more information for I always was a tinker'er in things mechanical. The former well I have always been attracted to metalworking and it was years ago when I finished school in the mid 1980's my desire was a metal working apprenticeship but the mid 1980's was when industry died in the UK so apprenticeships where they still existed went to family members of existing employees, many of whom were not interested but employment in those times doing something one was not interested in was better than no job. As it is of all those I knew who through their family got apprenticeships not one of them is anything to do with the trades today, they got out as soon as they could.

 

So I have it two things I can do and do well, were part of me knows I can excel, but there is a strong negativity around me where I do and have always done, I have undervalued by abilities which has lead to naturally excelling in jobs far below my abilities, but that was pre ASD diagnosis, now I struggle to believe in myself and this I know is the ASD negativity acting as to face it adults with this thing there is not a great deal of positive thought around is there ?

 

So after all the above useless blurb, perhaps me trying to organise my thoughts, I hope to warn those seeking diagnosis, but something else I cannot quite put my finger on is a need I have I wish to know is there any provision for, though I expect not, but will inquire just the same, is there any business help/mentorship available for those with mild leaning difficulties or ASD in getting back to work and staying in work ?

 

You see, I have a work place, I have the majority of the tools, I have the skills and have identified several different markets to serve, all fringe markets, but markets where traditional industry does not go and people that wish to purchase can't be satisfied, basically markets with little competition and I have surveyed the need within those markets by being involved with them, but I seem unable, I seem unable and perhaps this thing is common to those with ASD, as I have heard it mentioned before, but I seem ;

 

Unable to join the dots. hi my hubby just diagnosed in august this year he is 51 although son 23 he was diagnosed at university at19

Share this post


Link to post
Share on other sites

my late diagnosis did cause lot mix emotions rollercoaster of them including happiness at start followed by depression anger sadness as felt missed out on so much not only service/intervention wise elt robbed but also the knowledge and understanding was missing and negatively impacted on me in many ways as a child blaming questioning myself! Which had deep knock on effect to already low aelf eateem! growing up so not good in more ways than one was so frustrating feeling something not quite right doesnt fit in with others around you and not really knowing why or having right answers to throw back! ;c

hi i do understand a bit my hubby was diagnosed at 51 just 3months ago at least in a small way i now understand why him and i never went 2 social events but we just celbrated 25 years of marriage without celebrations he cudnt do itx

Share this post


Link to post
Share on other sites

That is so true but it's something that doesn't get addressed. At least those who were diagnosed when young had the benefit of that 'core support' but those of us diagnosed in adulthood get nothing - just an encouraging smile and the words "But you've done so well in dealing with the condition, no one would know you have AS." Maybe, but because I've learned to act/behave 'normally' doesn't mean that life in many ways remains a constant struggle.

so true thats all people say 2 me about my son it frustrates me and i am nt

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...

×
×
  • Create New...