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DGB

Diagnosed 5 days ago

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Hello all....

 

I was diagnosed with autism/aspergers 5 days ago and I'm over the moon with the diagnosis as it explains why my 48 years on this planet have, at times, been a bit of a struggle...... Armed with that information now. I feel like I can approach all that I do with a greater degree of confidence.... I hope this feeling lasts.. I look forward to chatting to people on the forum.

 

Dave.

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Hi, Dave.

 

It's enlightening to finally realise who you are, at least to an extent. I know it was good for me. You can finally find people with common interests and traits, and that's always a good thing.

 

Glad to hear it's helped you, and that you're on board here now. We are quite thin on numbers.

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Hello Dave

 

It's great that you've found your diagnosis to be so positive. I know exactly how good that feels.

 

I was diagnosed in my 50's - and it was an overwhelming relief. All the things that hadn't quite worked in my life suddenly had an explanation, and I saw all my difficulties in a completely different light. A 'light-bulb' moment for me.

 

That feeling of understanding has lasted, because I have now begun to live within 'my' boundaries rather than other peoples.

Although I read a lot about Asperger's Syndrome before diagnosis, I have continued to read and learn about myself, ( though I am careful to read positively and selectively.)

 

Really knowing yourself, after years of struggling to be NT, is an enlightening place to be. Welcome.

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Hello Dave

 

It's good to see you here like you I was diagnosed late in life at 47, it was a personal relief to finally know the reason behind so many things that has caused problems for me my whole life.

Now you have your answer things should be better for you and life may become better as a result.

 

Look forward to talking with you in the threads.

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Congratulations on your diagnosis.

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As a matter of interest how long did you have to wait for your assessment.

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Hi Dave

 

I was diagnosed a month ago & my feelings were exactly the same as yours.

 

The really great thing is looking on this forum & finding out that I'm not alone.

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Thank you all for your messages

 

I feel like I'm genuinely part of something for the first time ever. The person who assessed me is an aspie too and she said that there is quite an active group of aspies locally that I can now be a part of.....To be honest I think it's a little early to be meeting groups of people, aspies or not,...but I relish the thought of meeting one or two of them initially and perhaps ease myself into a larger gathering.....watch this space..

 

Thanks again

 

Dave

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As a matter of interest how long did you have to wait for your assessment.

It was about 5 months from referral to assessment.... had a few questionnaires to fill in in that time... I've no idea if that is a long waiting time or not....??

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Hi Dave,

 

Congratulations! Great news you've been diagnosed :-)

 

I'm Georgia. Like yourself, I'm new on here - only just posted my first post. It's good to see people on here who are being diagnosed late. I'm 34 and have not yet had a diagnosis. I'm trying to get one. In the past I've had referrals to a psychiatrist, CBT, counselling, anti-depressants... and I've recently been reading up on ASD and have done online tests which say I am ASD.

How did you get your diagnosis if you don't mind me asking?

 

Anyway, well done you - and may the future be a prosperous one for you now that you know! :-)

 

Georgia x

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Hi Dave,

 

How did you get your diagnosis if you don't mind me asking?

 

Georgia x

Hi Georgia.....

I have had all sorts of CBT and psychotherapy for anxiety over many years and I have been unresponsive to anything tried.... I've always thought the anxiety was a consequence of some underlying problem and not the root cause.... It was only when I was seeing a counsellor about 6 months ago that she picked up on certain things I was saying and certain mannerisms I was showing that she thought it would be worth me having a go at filling in an Aspergers questionnaire.....the results of which showed a high likelihood that I was on the autistic spectrum.... It was only the counsellors experience that picked up on these traits and got me the referral... I had personally ruled out the possibility of having Aspergers years earlier as I'd only ever read as far as the 'not understanding humour' bit and thought this doesn't apply to me..... I will remain eternally grateful to the counsellor for spotting something that many other professionals hadn't ....Good luck to you .....

Dave

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Thanks Dave - that's really interesting. Like yourself, I'm not doing very well at all with any therapy Ive had despite numerous attempts. I can't communicate with anyone close to me about what's going on (apart from my partner who I live with) as they won't understand and they won't believe me.

My CBT worker told me basically he doesn't think so when I suggested I thought I had aspergers. I'm going to make another visit to the doctors this week. He's diagnosed me with TMD (Temporomandibular joint disorder), which is stress related. He wants to get to the route of my stress. He's a new doctor, and I think he might refer me to a psychiatrist. Fingers crossed. I hope they can get through and try to see me for everything I am - not just what's on the outside.

 

How has your diagnosis changed your life? Has it all felt better for you since?

 

Georgia xx

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Why does your CBT worker deny you could have aspergers? Would showing them a list of symptoms often displayed in autistic females help? Some specialists have (ironically) quite black and white ideas of what aspergers is and isn't.

 

For me people not believing what im saying to them causes me distress but that's more related to my traumatic childhood than my pre aspergers situation.

 

If you would like to meet other spectrum folk both diagnosed and not I highly recommend autscape the autism retreat (see the general discussion forum for more details). Theres even a womens group discussion if you would like to meet other Asperger females.

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It's way too soon to know how the diagnosis will change my life.... I'm looking forward to meeting local Aspies ..If I can make a few friends who understand me and don't judge me when I find it difficult to speak that would be life changing..... It has been just over a week now since the diagnosis and I've spent a lot of time thinking back to how my life may have been had I been diagnosed earlier..... I'm not going to dwell on the past and making myself miserable.....but it's something I think I have to think about..... I should hear something from the lady who diagnosed me in a week or 2.... I can't plan beyond that as I have no idea what happens next??? I can have up to 5 sessions with the lady who diagnosed me....but I'm not sure whether that is for some sort of therapy or some sort of q&a session so I can find out all I need to know??? No matter what the future holds there is no doubt in my mind that getting the diagnosis is going to have a positive effect on my life.

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Congratulations on your diagnosis.

Many thanks.... I feel like my life can begin now.

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DGB

 

While a diagnosis can be a great help in understanding many things there will be some problems because of it. If your trying to work they will have to contact your doctor before an employer gives you a job for health and safety to ensure your safety can be guaranteed that's what they tell you. If your employed a job you have been doing for years can suddenly become not suitable for you again on the grounds of safety. They say you need a social worker but there just isn't the funding it appears it's enough to stop you doing certain things but not bad enough so you can get help where you need it. It's done me more harm than it has helped, it's good I know now and it has helped to make sense of many things but does it help in society no it doesn't.

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Livelife

 

I suppose every person who is diagnosed will react differently and the effects of the diagnosis will vary widely depending on a persons circumstances.... For me personally I don't see any immediate down sides..... I was self employed up until a few months ago when my dad died since when I've taken on the role of carer for my mum who has dementia... I am not effected financially as a result of the diagnosis....and I'm pretty sure I won't need a doctors permission to go back to working for myself once I can't or no longer need to care for my mum.. For some I'm sure a diagnosis will have a negative impact....but I can only speak for myself...and as far as I can see....the future's bright....or at least a lot brighter than before the diagnosis.

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Like the difference between all Aspies, everyone who has received a diagnosis will be different and each will have their own individual needs.

 

I went for assessment/diagnosis because I wanted to know... and for a lot of people (including myself) that knowing is all that is needed to set one on the right path.

The knowledge I had gained from years of working in Health Care/Mental Health Support/Learning Disabilities was enough to ensure I knew enough to work alone on the area's that had caused me problems in everyday life. Social workers and welfare benefits did not come into the picture.

 

I find it troubling and unfair that even if one was working before diagnosis, you suddenly might become a health and safety problem, and have to have a doctor's permission to work, after diagnosis. It is not as if you have changed into a different person - in fact having the self-knowledge that a diagnosis brings, is surely going to make you a better employee.
That sort of employment problem makes 'Self-employment' seem a very attractive alternative.

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I find it troubling and unfair that even if one was working before diagnosis, you suddenly might become a health and safety problem, and have to have a doctor's permission to work, after diagnosis. It is not as if you have changed into a different person - in fact having the self-knowledge that a diagnosis brings, is surely going to make you a better employee.

That sort of employment problem makes 'Self-employment' seem a very attractive alternative.

 

I couldn't agree more with you on this ... I'm fortunate in that I can go back to working for myself whenever I want..... I didn't realise that H&S might get involved for employees who are diagnosed and I can see how this may really hinder a persons career prospects.... Have just been watching the Autistic Gardner and I hope many employers were too..

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I was diagnosed and within a year I was dismissed due to incapacity and previously I had been employed there for nearly a decade. For me it has been an awful experience but realise that it isn't always that way for everybody I suppose it depends on the people around you and employer if you happen to be working.

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Livelife

 

I hope you manage to turn that bad experience around.

 

Perhaps a different employer would have taken different action. I think that how people (NT's) react depends a lot on how much they know about Autistic Spectrum Condition, and let's face it, not many people 'out there' have very much ASC knowledge at all.


DGB points out the value of The Autistic Gardener - it certainly shows the good things and the difficulties, associated with ASC, and the range of 'differences' between individuals. It really is a superb, informative programme.

 

Unfortunately, in opposition to that, there seems to be an awful lot of mis-information around - and people will often follow mis-information they hear from someone else rather what they have investigated for themselves. One might say that is human nature, but perhaps it is more accurate to say it is NT-human nature - something that is often very baffling to ourselves, especially in the work-place.

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I was 54 when i was diagnosed with with Aspergers, it does not help. With state benefits maybe. I would rather be of use, as I suspect so would you.

 

Ian

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Livelife

 

I hope you manage to turn that bad experience around.

 

Perhaps a different employer would have taken different action. I think that how people (NT's) react depends a lot on how much they know about Autistic Spectrum Condition, and let's face it, not many people 'out there' have very much ASC knowledge at all.

 

DGB points out the value of The Autistic Gardener - it certainly shows the good things and the difficulties, associated with ASC, and the range of 'differences' between individuals. It really is a superb, informative programme.

 

Unfortunately, in opposition to that, there seems to be an awful lot of mis-information around - and people will often follow mis-information they hear from someone else rather what they have investigated for themselves. One might say that is human nature, but perhaps it is more accurate to say it is NT-human nature - something that is often very baffling to ourselves, especially in the work-place.

 

I am continuing to change my situation as best I can and try to be fair but sometimes I am afraid my experiences do tend to affect me more than I would like them too.

Not all employers will be like this I realise that and I do hope to find one that will except me for who I am. It's not as if I was a bad employee and not able to complete tasks. In reality I did the tasks too well I followed rules completed paperwork as requires on time but for some reason there was always a problem from them and yet I didn't break any company rules or policy. Most of the time I Didn't even know what the problem was everything was done as it should be maybe it was me or them I just don't know. That's why I get frustrated and in all honesty I am scared to trust another employer.

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I was 54 when i was diagnosed with with Aspergers, it does not help. With state benefits maybe. I would rather be of use, as I suspect so would you.

 

Ian

You are so correct there I too wish to feel useful I feel a burden to everybody and have little purpose at the moment.

I was 47 at my diagnosis and understand what a late diagnosis means in relation to life before.

I've seen some of your posts before but you haven't been around for some time so I believe. Good to see you here my friend.

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I think the long stretch of time that went before diagnosis must be one of the hardest things to come to terms with, after a later diagnosis. I certainly found it so.

 

My first and over-riding feelings after diagnosis were relief and happiness at having an explanation for my nearly six decades of a life that never went right, no matter how much effort I put into what I tried to achieve. I got the all the qualifications I attempted, and was efficient in my various jobs - but I never could 'join in' properly with the social stuff, the team activities, communicating well with co-workers - and I could not, nor wanted to, be 'one of the girls', which in turn led to non-stop bullying. And then suddenly I had the answer - Asperger's - great!

 

Soon after diagnosis, on top of the relief and happiness, I began to look back at all those years of struggle. I am still trying to sort out a few of the loose-ends - asking myself if those things that can't be solved ought to be either dropped and let go of, or an attempt made at resolution. But two years on I have pretty much let go of the looking back, because it is now not constructive to dwell on it - it is done and cannot be altered, and I think I have wasted enough time thinking about it already.

'Letting go' seems to be the resolution I needed. Difficult but possible, even for an Aspie who likes to have all things finished completely and then neatly filed away in her head.

So my focus is turned towards now and the future, not the past nor the years when I did not know I had Asperger's.

 

I was in my late 50's when diagnosed, which is pretty late for a diagnosis. It makes me smile when I hear people say they have had a 'late diagnosis' at seventeen or eighteen years of age. Gosh - what I could have done with a having a diagnosis at seventeen or eighteen!!

 

As an after-thought.... I have an acquaintance in their mid-sixties who has recently been diagnosed with Asperger's. Now that is a late-diagnosis. :)

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A lot of things depend on the personality and experiences of people the stronger you are the better it is in reality some people cope better than others.

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I was in my late 50's when diagnosed, which is pretty late for a diagnosis. It makes me smile when I hear people say they have had a 'late diagnosis' at seventeen or eighteen years of age. Gosh - what I could have done with a having a diagnosis at seventeen or eighteen!!

Late 50s seems rather early to me, as mine will be just before my 60th birthday, or maybe even on it!

 

I've been aware of something not being right all my life, but never associated it with being born different. I put it down to a mix of having older parents and no one my age in the extended family I could relate to, plus some bad luck in not happening to meet the right people to have relationships or become close friends with. I experienced a little bullying at school, but never any at work.

 

It was after my mid life crisis when I was 50 that things started to change. I suddenly became able to talk about stuff I'd never been able to talk about before, saw various counsellors, started meeting different people and learned about different things and new ideas. Thinking my past was behind me and I was making good progress, I started to do new things I was confident I could handle. That eventually led to me getting into a situation that has cost me a huge amount of money, and left me very isolated with no useful support, and I don't know how to get out of it. I now realise, or think I do, that thinking differently, not being good at reading people or communicating with them, and not being good at handling difficult situations, is what got me into this situation. I made the decision to go ahead with this based on what turned out to be incomplete information. Some of it appears to have been due to lies and incompetence by people I was dealing with, but I think a big part is having absolutely no awareness that I may have Aspergers. If I'd known that, I hope I'd still have taken the same course, but that I would have done things differently, and not got into this mess.

 

I think I went from a safe life that I had adapted to fairly well, to one that has pushed me beyond my ability to cope. Maybe if I'd stayed in my old life, I'd never have discovered Aspergers, and just have gone on forever being a bit depressed and sad that I'd missed out on some of the important things in life that most people experience that I haven't. Or maybe I wouldn't, as looking back on my life, I think I can see a gradual decline in my ability to cope with life that's been going on for many years. So maybe as I start to head into old age, things would have started to fall apart anyway. That's why I think a diagnosis is so important. I know jobs and money are a big issue, but knowing a long time ago could have helped me to make big decisions that improved my life, rather than ones that got me into a mess.

 

My diagnosis is important partly as I think it's a vital piece of information that I need to help me decide how to sort out the current mess. Maybe it's the one fact that will help me accept that the only solution is to walk away from it and accept a huge financial loss that harms my future security. Or maybe it will help me find the right support to help resolve it. So I'm pretty much sitting here waiting for my appointment, to obtain a vital piece of data I can't move on without.

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A lot of things depend on the personality and experiences of people the stronger you are the better it is in reality some people cope better than others.

I think some people see me as weak, but I have a feeling that if I wasn't so strong I wouldn't have been able to keep going for so long, and would have fallen apart long ago. I remember thinking 30-40 years ago that I wish things would totally fall apart, so someone would notice, and help me, but it never happened. So I'm not sure that being strong is always a good thing.

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'Letting go' seems to be the resolution I needed. Difficult but possible, even for an Aspie who likes to have all things finished completely and then neatly filed away in her head.

So my focus is turned towards now and the future, not the past nor the years when I did not know I had Asperger's.

 

 

 

I think this is the path I will strive to follow..... There's nothing I can do about the past now... so I'll try my best not to dwell on it. I've spent most of my life soul searching and blaming myself and questioning why it was always me and why don't I fit in and why do they bully me??? ...... but all the while knowing deep down that I had done nothing to deserve the treatment.... With the diagnosis, I now feel vindicated.. and this feeling will hopefully be enough to know that it was always the others or the systems that were at fault.... and I had never done anything deserving of what I went through....I was just being me. Hopefully, this way of thinking about things will work for me and will allow me to put the past to rest pretty sharpish... I feel very positive about the future.....

Edited by DGB

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The term late diagnosis really depends on your experience. i have been bullied for my differences up until my diagnosis in my late teens ive managed to make some allowances and some adaptations to help me with my autism but all this has been achieved by hard work and commitment very rarely have local authorities helped me. ive had my gran helping me in the past and now she is too unwell to help anymore so ive only a few relatives left who feel able to advise me on life situations. i only got my home help because my gran pestered social services until they finally listened and we met a social worker who agreed to give me support on the grounds gran needed help.

 

i was then allowed to take my support with me when i moved out. Now ive got to move back to my mums and feels like a step back. im in my mid 30s and still haven't found the stability so i can find paid work or a relationship. My mental health and other disabilities are also getting in the way along with habits ive picked up to 'cope' with my mental health situation.

 

Late diagnosis but no problems at home is a better situation then earlier diagnosis but still being blamed for your disabilities years later.

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Late diagnosis but no problems at home is a better situation then earlier diagnosis but still being blamed for your disabilities years later.

 

Hi Trekster

 

'Late diagnosis' with no problems at home - would have been wonderful. But it is because of the terrible problems I had at home and at school that I began questioning what was wrong in our household and why horrible treatment was meted out to me. Of course, in the 50's, 60's and 70's there was no wide-spread knowledge and explanation for Asperger behaviour and problems.

Treatment from my mother at home included daily physical and emotional abuse, but my siblings appeal to relatives for help was met by a telling-off from those 'grown-ups' and dis-belief. My relatives still keep themselves estranged from me because of this. I am sure that had there been the facility in those days, both me and my siblings would have been removed from our family home. My school environment was just as nasty, as I was bullied constantly from starting school until leaving at seventeen.

 

Looked at in this context, late-diagnosis, doesn't mean that one has had no problems until the time of diagnosis. Like mine I am sure a lot of late-diagnoses are made after years of difficulty, anxiety, estrangement from family, and also mis-diagnosis by doctors - my catalogue of mis-diagnosis includes PTSD (for having visual thinking) and Depression.

 

This is all stuff that I am happy to put behind me now, but it has taken decades to get to this point. The recognition and approval of family seemed very, very important for years, but eventually I came to the realisation that it was not going to happen, no matter how much I wanted it. So I had the choice of spending what time I have in looking back and hoping for that acceptance from family, or with the self-acceptance my diagnosis has at last given me, I could just get on with my life. I have chosen the latter.

I have found it to be a good decision, and extremely freeing - after decades packed with anxiety, bewilderment, struggle and difficulty, the lifting of that weight is something that I had never felt before...

....and I am determined to make the most of it. :)

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Hi Trekster

 

'Late diagnosis' with no problems at home - would have been wonderful. But it is because of the terrible problems I had at home and at school that I began questioning what was wrong in our household and why horrible treatment was meted out to me. Of course, in the 50's, 60's and 70's there was no wide-spread knowledge and explanation for Asperger behaviour and problems.

Treatment from my mother at home included daily physical and emotional abuse, but my siblings appeal to relatives for help was met by a telling-off from those 'grown-ups' and dis-belief. My relatives still keep themselves estranged from me because of this. I am sure that had there been the facility in those days, both me and my siblings would have been removed from our family home. My school environment was just as nasty, as I was bullied constantly from starting school until leaving at seventeen.

 

Looked at in this context, late-diagnosis, doesn't mean that one has had no problems until the time of diagnosis. Like mine I am sure a lot of late-diagnoses are made after years of difficulty, anxiety, estrangement from family, and also mis-diagnosis by doctors - my catalogue of mis-diagnosis includes PTSD (for having visual thinking) and Depression.

 

This is all stuff that I am happy to put behind me now, but it has taken decades to get to this point. The recognition and approval of family seemed very, very important for years, but eventually I came to the realisation that it was not going to happen, no matter how much I wanted it. So I had the choice of spending what time I have in looking back and hoping for that acceptance from family, or with the self-acceptance my diagnosis has at last given me, I could just get on with my life. I have chosen the latter.

 

I have found it to be a good decision, and extremely freeing - after decades packed with anxiety, bewilderment, struggle and difficulty, the lifting of that weight is something that I had never felt before...

....and I am determined to make the most of it. :)

I am seeing what your saying here and how the diagnosis made a big difference to your life and I am very pleased that it turned out this way for you.

I still have my personal doubts maybe if I hadn't lost my job and become the object of different people's views on what I need to do to put my life in order maybe I wouldn't be feeling the way I do.

It's good to know you had a good outcome from your assessment I hope many others feel the same as you do after their results are known to them.

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Hi Trekster

 

'Late diagnosis' with no problems at home - would have been wonderful. But it is because of the terrible problems I had at home and at school that I began questioning what was wrong in our household and why horrible treatment was meted out to me. Of course, in the 50's, 60's and 70's there was no wide-spread knowledge and explanation for Asperger behaviour and problems.

Treatment from my mother at home included daily physical and emotional abuse, but my siblings appeal to relatives for help was met by a telling-off from those 'grown-ups' and dis-belief. My relatives still keep themselves estranged from me because of this. I am sure that had there been the facility in those days, both me and my siblings would have been removed from our family home. My school environment was just as nasty, as I was bullied constantly from starting school until leaving at seventeen.

 

Looked at in this context, late-diagnosis, doesn't mean that one has had no problems until the time of diagnosis. Like mine I am sure a lot of late-diagnoses are made after years of difficulty, anxiety, estrangement from family, and also mis-diagnosis by doctors - my catalogue of mis-diagnosis includes PTSD (for having visual thinking) and Depression.

 

This is all stuff that I am happy to put behind me now, but it has taken decades to get to this point. The recognition and approval of family seemed very, very important for years, but eventually I came to the realisation that it was not going to happen, no matter how much I wanted it. So I had the choice of spending what time I have in looking back and hoping for that acceptance from family, or with the self-acceptance my diagnosis has at last given me, I could just get on with my life. I have chosen the latter.

 

I have found it to be a good decision, and extremely freeing - after decades packed with anxiety, bewilderment, struggle and difficulty, the lifting of that weight is something that I had never felt before...

....and I am determined to make the most of it. :)

I was bullied until in my mid 20s. It is documented now that PTSD can be caused by school bullying. You can have both PTSD and autism as I do. I am pleased you managed to get on with your life and overcome the effect your family had on you.

 

The point I'm making is if your diagnosed late but have a supportive family that's better than being diagnosed late without a supportive family or 1 that blames you for your autism as a few of mine have. If the family and the individual can compensate for the autistics needs then a diagnosis is deemed unnecessary. However many of us really need the diagnosis.

 

I'm just about to start therapy for the mental health problems that have held me back for so long. Also about to get some post diagnostic support.

 

Ally

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Hi Ally

 

PTSD was mooted by my GP almost twenty years ago, after I was having some trouble sleeping. I did emphasize to him that I was not getting flash-backs about anything, though I had already told him that I always thought in pictures, i.e. visual thinking. Convinced that PTSD was the cause of the visual thinking, he referred me to a PTSD expert, who said there was no way I had PTSD and thankfully informed the GP that was so.

I worked in NHS Psychiatric at the time, and was certain the GP's interpretation of my visual thinking was wrong - though being aware of Aspie visual thinking was not wide-spread with GP's then. It just illustrates how people with ASC's can have their normal ways of thinking/processing mis-interpreted.

 

I had visited the GP to ask for some counselling as I was anxious about certain things that seemed to me to be strange things to get anxious about, (like a bus I was waiting for not arriving on time, or the ring of the telephone), and I wanted to find out why.

I'm happy to say that I got the three counselling sessions the NHS provided at our local surgery at that time... though I had to wait six months for them. The sessions went well and I learnt some very useful strategies which helped to reduce the anxiety.

 

I wish you all the best with your therapy. I hope it goes well and that you have a good outcome.

 

Nell

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I think some people see me as weak, but I have a feeling that if I wasn't so strong I wouldn't have been able to keep going for so long, and would have fallen apart long ago. I remember thinking 30-40 years ago that I wish things would totally fall apart, so someone would notice, and help me, but it never happened. So I'm not sure that being strong is always a good thing.

From time to time I find myself wishing I had a physical health problem, so that it would be clear to others that I had a problem. I have often been described as "strong", but really I just keep going because I don't know what else to do. (Not that I am suicidal.) I just don't know how to begin to explain what it is I find difficult, but don't know if I have it in me to let things fall apart and so I appear to be doing ok. So I agree, being "strong" is not necessarily a good thing.

Edited by gmboy

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From time to time I find myself wishing I had a physical health problem, so that it would be clear to others that I had a problem. I have often been described as "strong", but really I just keep going because I don't know what else to do. (Not that I am suicidal.) I just don't know how to begin to explain what it is I find difficult, but don't know if I have it in me to let things fall apart and so I appear to be doing ok. So I agree, being "strong" is not necessarily a good thing.

It seems as though no one believes me when I tell them I don't feel well. It's been like that for many years. I'm tall and I've been told quite slim (no beer belly, or much sign of overeating), and think I look fairly young for my age. I think I've subconsciously refined my act of being normal but a bit unsociable to the point where if I say I'm not feeling well, people tell me that I look healthy and am talking rubbish. I spend hours most days trying to think of how I can get my life sorted, and come up with some very logical and practical plans, but then I come to this huge bottomless pit that is the bit where I need to involve other people, and I have no idea how to explain that.

 

I don't want to have a physical health problem, but at least someone might actually notice. I think it would have to be pretty serious one though, otherwise I'd probably be told that's it's what to expect at my age, and still get ignored!

Edited by Confused Traveller

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...then I come to this huge bottomless pit that is the bit where I need to involve other people, and I have no idea how to explain that.

 

I don't want to have a physical health problem, but at least someone might actually notice. I think it would have to be pretty serious one though, otherwise I'd probably be told that's it's what to expect at my age, and still get ignored!

Yes, involving other people as well as acting on the plan (or information I have found out). They are the difficulties I have.

 

I remember when I was about 8 my brother broke his leg. I thought to myself "I wish I had a broken leg", although rationally I knew I didn't want to experience pain, inconvenience and potential long term effects. But it is a theme, as at different times in my life I have had a similar thought about different health conditions. I am sure a chronic health condition is not "fun" and that I don't want to acquire something - I actually like feeling healthy, eating well etc. It's just about the difficulty explaining my experiences that feels impossible.

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I've got physical health problems alongside my autism and other stuff. I have equal difficulties explaining my physical health stuff to everything else and I'm a part time wheelchair user.

 

Cheers nell

Edited by trekster

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