Recently Diagnosed

I agree, True Colors, something seems to happen to those who weren't picked up when younger.

It would be useful to have more understanding of those whose AS appears mild in later life through having coping strategies and ways of passing off as NT. Is this because they are "mild" or because circumstances have had an ameliorating effect on the AS.

There is a danger of dividing people having "real" aspergers because they are not coping and having secondary problems such as depression, and people who are coping and managing their lives. I emphasise that many people with AS have comorbid and secondary conditions that greatly limit their lives as well as having more marked symptoms related to AS diagnostioc traits. But like for like, similar levels of underlying limitations, research is urgently needed to understand what might enable some people to cope better.

Those nearer my generation "had to keep their heads down" (whether on their parents' part or their own), and had to learn to cope on their own (given symptoms were often treated by GPs as immaturity or inadequacy if not marked enough for worse consequences).

Is that conditioned survival significant?

Flutterby said:

I've been wondering for a while whether adult Asperger's is different in kind from childhood AS. It seems that those whose AS is not detected until they are well into adult life, who have been in gainful employment, who may be academically qualified, are - for various reasons - less impaired than those who are detected in childhood. I'm wondering what is the reason for this. Is there a 'cutoff' point? Are they distinct conditions? Is it a question of raw intelligence, so that adults have been able to work out various coping strategies and their problems simply haven't been noticed? Something else? Any thoughts, anyone?

I've sometimes wondered whether it was the fact that in  the years before AS was recognized mental problems were feared since the 'treatment' often meant going into a lunatic asylum (i.e mental hospital) and parents wouldn't voluntarily bring the attention of a teacher or doctor to any oddities in their child's behaviour,  concentrating instead on persuading the child to act normally.   Obviously the better the raw intelligence the more successful an individual would be in working out coping stratergies and the ability to fake reactions in certain situations as he/she moved into adulthood. 

This is an interesting question Flutterby. I think how far AS affects people is very individually specific, so some adults diagnosed with AS will have profound problems while  others will have mild difficulties, will be coping very well, but still feel different and need answers for their current or previous problems. So it is not the case that people with late diagnoses are necessarily 'mild', just that teachers and other professionals were not aware of AS as a possible cause behind the persons' difficulties. Even today many parents struggle to get their (even quite severely affected) children diagnosed and this is after autism has entered the public consciousness in a way that it had not  done in the 1990s or before. It is also the case that more children are being diagnosed who are quite 'mild' because it has become more acceptable to be diagnosed with various mental conditions.

I  have had a range of difficulties since I was a toddler. I was slow to pick up fine-motor skills such as building towers with plastic bricks; could not do the most basic  jig-saw puzzles due to a visual-spatial learning difficulty; did not know the alphabet until I was over 7 years; was very slow to learn basic numerical and geometric skills; could read fiction books really fast but did not understand the content etc. I was hyperactive; restless; walked on tiptoes; had prolonged tantrums if I was made to sit in my pushchair and still had tantrums well into adolescence (I still have them sometimes, but not so much now); was socially and emotionally immature; confused by loud, noisy and chaotic social situations, which made me retreat into myself and gave me the appearance of being very shy; and yet I was noisy and loud in the classroom whenever I got bored and thought I could get away with it; was only ever interested in one subject at a time to an extreme degree; was very anxious and phobic (I still am).

The school got me assessed when I was 10, and this was the schools' decision, and I got a statement and one-to-one support with things like comprehension and coordination. But no diagnosis was given and nothing was done to sort out my social difficulties, so I went through secondary school feeling increasingly isolated and simply relied on my academic abilities, and intense interest in the actress Kate Winslet,  to get me through this time. My OCD got worse and eventually I hardly left the house, which made my parents persuade me to seek help. I received CBT, but it did not help me, and I read about asperger's and realised that it was likely I had this condition (my parents agreed) and this insight led me to get a referral on the NHS to the Autism team, and I finally got diagnosed in March 2009. Since diagnosis I have received the support I need and I have made a lot of progress.

I've been wondering for a while whether adult Asperger's is different in kind from childhood AS. It seems that those whose AS is not detected until they are well into adult life, who have been in gainful employment, who may be academically qualified, are - for various reasons - less impaired than those who are detected in childhood. I'm wondering what is the reason for this. Is there a 'cutoff' point? Are they distinct conditions? Is it a question of raw intelligence, so that adults have been able to work out various coping strategies and their problems simply haven't been noticed? Something else? Any thoughts, anyone?

I find humour is helping me cope with my AS although at times it is just a front as inside I am in turmoil with it. I think many people with AS, of our generation, feel that their lives would have been easier if they had known earlier but I try not to dwell on this myself and I am just glad I have answers to my questions at long last.

Some of my relatives know about my AS status but most are quite ignorant of the issue and how it affects people like us. One thing I have decided is that I will take responsibility for my AS and ensure my autistic identity is recognised by the state and all it's many sub divisions.

I was diagnosed three years ago at the age of 58. I'm female, and married, with two adult sons. For me the diagnosis answered about 50 years' worth of questions; it was a very positive and helpful experience.

JDW, you sound a lot like my husband .. he jokes about us 'Asperging' together.. he hasn't been formally diagnosed, so I'm not sure; but he doesn't seem to have many problems with it. We are both electronics engineers, so there's a lot of common ground.

I do wish I had been diagnosed much earlier; I might have had fewer problems at work - I might still be *in* work, instead of taking an early exit package three years ago, before diagnosis. That said, the diagnosis has been largely ignored by relatives and friends, who are still convinced I'm a nutter  

My own reactiion to diagnosis, and I accept this is personal to me and may not reflect other people's reactions, was 1 - closure, and 2 - refinement of coping strategies. I suddenly had an explanation for all my past struggles and I could off-load a mass of emotional baggage around feeling deprived and hard done by. I had coping strategies of a sort but they were cumbersome and complex - lots of avoidances and absurd rules to minimise adverse consequences, and strategies to fend off problems etc. Getting the diagnosis meant I could mine the literature for explanations that meant I could dump the silly coping strategies and work out what is really necessary.

Diagnosis, for me at any rate, was a release. It has enhanced my self confidence and self esteem, shed a lot of the spiralling anxiety, and I've started doing many things a lot better. ..

...I agree that's one life, one reaction to diagnosis. But I wondered if people are looking for problems with diagnoses that aren't really there. You are surely the same person before and after diagnosis. What you should look forward to is improvement.

I realise that the diagnosis identifies you as needing interventions, and may have implications for work etc., but does having the diagnosis make you into a helpless person whereas previously without the diagnosis what was different?

Longman, I've quoted your post because that's the way I felt as a result of my diagnosis earlier this year and I couldn't have put it better.

On how it affects others I've found some useful insights in the individual experiences recounted in "Asperger's Syndrome and adults...... Is Anyone Listening? Essays and Poems by Partners, Parents and Family Members of Adults with Asperger's Syndrome" Collected by Karen E. Rodman  Jessica Kingsley Publishers 2003.

HI

Your experience is broadly similar to mine and perhaps many others. Having a question mark hanging over one's life is difficult to live with and the solution when it comes can be liberating. Personally I have been diagnosed with all sorts in the past due to abusive parents and because I am what they call really high functioning so I always just about managed to get by. No end of counselling has helped until now, as luck would have it my present counsellor is a consultant clinical psychologist and she has made all the difference.

My diagnosis has given me hope and i'll take that over the past 41 years and day.

Regards

James

Hello John,

I think our wives struggle more than we do at times. My wife is struggling with being the centre of everyones universe right now, although a big part of her needs it because it makes her feel needed. My father has alzheimer's and my mum has struggled with a sense of loss ever since he was diagnosed. I recognise something similar in how my wife is dealing with my diagnosis. According to many accounts this is a common experience for the spouses of people with Asperger's. 

I have been married three times now and my relationships usually prove unsustainable and end bitter recrimination but my present wife has a lot of experience with people on the spectrum and it is through her that I have go this far. I know its is hard for them and whilst they can often be the most forgiving and understanding of all the people we met sometimes perhaps our need for them to understand is overpowering for them.

I agree with you, I am the same person as I was the day before my diagnosis and to me the diagnosis has made little or no difference at all. 

Thanks 

James

I cannot comment on relationships because that's an area my aspergers doesn't seem to accommodate, but I am puzzled by the reponses to a diagnosis in later life. I know that situations vary widely from person to person, but I sense diagnosis as a kind of "death sentence" the way some people respond to it.

If you've lived forty years with aspergers not knowing you've got it, then discover you have it, in what sense have you changed?

If something has changed it may be diagnosis practice. When I was diagnosed 6 years ago at 55 I was told that some people weren't told their diagnosis if it was felt they would react badly. They had to judge whether the person could handle it or not. One justification was that diagnosis removed hope - where before you hoped things would get better, being diagnosed had a finality about it implying no change no hope.

My own reactiion to diagnosis, and I accept this is personal to me and may not reflect other people's reactions, was 1 - closure, and 2 - refinement of coping strategies. I suddenly had an explanation for all my past struggles and I could off-load a mass of emotional baggage around feeling deprived and hard done by. I had coping strategies of a sort but they were cumbersome and complex - lots of avoidances and absurd rules to minimise adverse consequences, and strategies to fend off problems etc. Getting the diagnosis meant I could mine the literature for explanations that meant I could dump the silly coping strategies and work out what is really necessary.

Diagnosis, for me at any rate, was a release. It has enhanced my self confidence and self esteem, shed a lot of the spiralling anxiety, and I've started doing many things a lot better. Diagnosis may have been timely as within three years I hit cancer, and very nearly died because of secondary problems before the cause was identified. I am certain having the diagnoses and new strength got me though the chemo and the surgery.

I agree that's one life, one reaction to diagnosis. But I wondered if people are looking for problems with diagnoses that aren't really there. You are surely the same person before and after diagnosis. What you should look forward to is improvement.

I realise that the diagnosis identifies you as needing interventions, and may have implications for work etc., but does having the diagnosis make you into a helpless person whereas previously without the diagnosis what was different?

Maybe I'm placing too much on my own experience but perhaps, are there any positives to build upon?

Hey James

Sorry for the late reply. My wife says that she does sometimes feel lost and lonely as she doesn't want to burden me with her day to day problems as she is always trying to support me. She says that she isn't going to change herself for me i.e somethings she does do bother me but if she changes herself completly to accomadate me then she feels like then she won't exist in herself she will only exist for me. We have known each other since the 6th form at school so we have had a long time to get used to one another and getting diagnosed I am still the same person but she is very happy that it now opens up avenues for us both to get some help coping and forming new stratergies to make our lives together easier.

I hope this helps a bit?

John

all the stories I read on here are giving me hope for the future as I know I am not alone anymore. I told my wife yesterday that I am comfortable with my autistic identity and whilst I am trying not to let it define me I firmly believe that I need to accept it and work with it not against it as I have done for these past 40 years. 

My wife struggles as she feels she is losing a companion, someone who gave her support and is seeking help with that issue. I find this confusing because I am the same man I was when we met and the same man I was the day before and after my diagnosis, frankly I feel no different. 

Does your wife feel remotely similar or have a sense of loss?

James

Luckily for me it was my wife who started to notice how different I was after a long bout of depression that I went through and also talking to a friend of hers who's husband and daughter have Aspergers and son is Autistic. I happened to mention to her that on my way to Tai Chi one night I wasn't able to cross the road where I normally did due to some road works and how that had upset my whole evening. She sat me down and told me what she had been talking about with her friend and I agreed to let her phone and chat with our gp about her concerns. It was strange for me because even though for years I have known that i was different in some ways to others I had got used to it being me and thats how I was. A few years earlier I had been diagnosed as having Episodic Dyscontrol due to all the angry and violent outbursts I was having at work etc and then gone through countless therapy sessions and CBT but actually getting nowhere and never feeling any better in myself. It is not easy on my wife living with me as so much planning has to go into something as simple as going out for the day with our kids although I am happy to say I can at times now do that as for years I couldn't as my anxiety etc would have effect on them and ruin the whole day so I used to stay at home out of the way so at least they had a good day.

My wife has been contacted by a care advisor and she will be getting some help and support from the people who diagnosed me. The most important thing that is happening now though is that I am talking about what I am feeling and thinking etc, it is hard to explain at times as you well know but it is definately helping and has improved our day to day relationship. I told her some signs of when I am feeling anxious or my mood is changing and she has also noticed some things that I didn't know that I did and it is agreed that I take a timeout from the situation to either go upstairs or to my computer room.

I have to admit I am a very lucky man to have her and my kids and for thier understanding and support. Like you said it will never be ok but it will get eaier with time and unserstanding.

John

Hi thanks for the reply and it is so much better knowing that I am not alone in the big world after all these years. You mentioned our long suffering wives and was wondering how your wife is coping? My wife really struggles even though she has plenty of experience having two autistic children of her own. She sees me as an adult and part of her brain just feels that I should be ok now when, as you well know, it will never be ok. My wife began some form of support counselling today to help her make the adjudgements needed to move forward and I am soon to embark on some kind of focussed therapy to help me adapt to life.

James

Hey James.

I'm 38 and have just recently been diagnosed with Aspergers over the last couple of weeks and after reading what you had written apart from a few things we experience exactly the same things day in and day out. My occupational Therapist reccomended this site but I never joined untill I got my diagnosis but since then it has been a wealth of infomation and a real therapy in it's own to read about what other people experience and not feel quite so alone as I have for the majority of my life. I'm real happy for you that you got your diagnosis and that we can now both start a new chapter of learning and understanding how to make life a little easier for ourselves and those around us especially our wives!!

All the best to you.

John

Hello James 

Welcome to the forum and thanks for posting.  I am really happy to read your post and that you don't feel so alone and isolated.  I hope that you will find lots of information and support here.

Best wishes 

Colinthe cat - mod