Undiagnosed AS in adulthood

[Tez]

Reading Bid's post about "exploring the possibility" that she has AS and her earlier posts about the difficulties she was having with her dad's healthcare because he was undiagnosed, I was wondering what others felt about seeking diagnosis at a time when you are coping relatively well. If you felt you had undiagnosed AS would you seek an official diagnosis? If you wouldn't, what would your reasons be for not doing so? Could an official diagnosis hinder as well as help?

[mossgrove]

I would place myself firmly in the 'Dont Know' camp about whther or not I have AS.

 

I can see a great many similarities between my son and myself, and can I identify with much of what Claire Sainsbury writes in her book 'Martian in the Playground' and many things that I do/have done make sense now I am aware of Aspergers behaviours.

 

Set against that my coping skills have developed to the point where the difficulties I face are relatively minor, and I do think sometimes that I would be finding things harder than I do if I did have AS.

 

As far as a diagnosis goes I am content twith the knowledge that I may have AS, anf to listen and learn from thise around me, but I have not felt the need to get formally diagnosed.

 

Simon

[DaisyProudfoot]

Thinking back to our childhoods in particular both me and my husband reckon we have some AS traits but we've managed to get into adulthood and cope OK so neither of us would going looking for a dx.

[baddad]

I think diagnosis as an adult could be a double edged sword, on the one hand offering some enlightenment about events/personal responses that may seem to place an individual at odds with the world, but on the other perhaps inviting unwelcome and inaccurate 'assumptions' from others that all people with ASD seem to suffer...

Mossgroves position seems a fairly comfortable one, offering some of the reassurances mentioned above, but without any support needs going unmet, because he doesn't feel the need for such support.

I think the main criteria to consider are whether the adult does have needs that aren't being met (i.e. feeling socially isolated or disenfranchised and not having the personal resources/understanding to deal with that - it doesn't have to be a need for 'physical' or self management support as such), and - more importantly if they are in the role of a main carer to other(s) with an ASD - whether there are 'overlaps' in symptoms that create bigger problems...

L&P

BD

[ceecee]

I have undiagnosed aspergers but it is very mild.I have got to where i am today with no support and feel i am copying ok.If I ever felt I wasn't then maybe I would seek help.But I am a mother of two, happily married and work in an office.So at the moment everything is fine.i think it depends on if you are struggling or not and how severe the as.

[littlenemo]

I think the main criteria to consider are whether the adult does have needs that aren't being met (i.e. feeling socially isolated or disenfranchised and not having the personal resources/understanding to deal with that - it doesn't have to be a need for 'physical' or self management support as such)

This is sort of where I'm at, becoming increasingly socially isolated over the last few years, but I can't see what use an official diagnosis would be. Is there any help given to adult AS?

As far as I can tell, other than having an official label, all it would mean would be that my GP would be more likely to prescribe anti-depressants (which I wouldn't take anyway).

Don't take this the wrong way, but the idea of joining the local Aspergers Adults group to socialise with others with social communications problems isn't tempting, which is why krism is so useful: relearning to socialise in a safe place with people who understand AS but have 'normal' responses seems the best help I could get.

 

That and having a partner who is understanding and supportive helps enormously.

[Canopus]

An official diagnosis could mean having to give up driving. Insurance companies want to know about all disabilities and disabilities vastly increase premiums. If someone with AS isn't diagnosed and needs to make a claim then they have the benefit of the doubt as legally they don't have AS. If someone diagnosed with AS doesn't tell their insurance company then the insurance policy is invalid and the insurance company won't pay a penny.

[littlenemo]

An official diagnosis could mean having to give up driving.

Poverty did that already, thankfully I always hated it, far too nerve-wracking.

[bid]

Interesting thread, Tez!

 

I think that if you feel happy with who/how you are then you probably have little to gain from a formal dx.

 

If on the other hand you have struggled all your life with various things, then I think it could help enormously. To understand your difficulties within the context of having AS has to be better than thinking it is because you are inadequate all your life

 

I am also painfully aware that my dad 'managed' all his life (not sure about the fall-out on his family though!), but that not having a formal dx made things very difficult this summer When he was diagnosed with Vascular Dementia, they also finally described him as having 'mild autism' too.

 

I'll keep you all posted on my journey...

 

Bid

[ceecee]

I understand the difficulties i have because of my aspergers without a diagnosis

 

Bid

I suspect my father of having aspergers and if he didn't have it I might of actually had a dad.

Not being funny sometimes it is worst for the people around the person who has aspergers, than for the person who actually has it.Aspergers can badly affect the lives of other people.totally sympathise with you Bid.

My father is an alcoholic, struggles to maintain contact with people and is completely unaware of how to be a father.Trains are more important to him than people!!!If he didn't have aspergers he would be a totally different person.

[baddad]

An official diagnosis could mean having to give up driving. Insurance companies want to know about all disabilities and disabilities vastly increase premiums. If someone with AS isn't diagnosed and needs to make a claim then they have the benefit of the doubt as legally they don't have AS. If someone diagnosed with AS doesn't tell their insurance company then the insurance policy is invalid and the insurance company won't pay a penny.

Are you sure on this one, Canopus, 'cos it sounds discriminatory to me?

If somebody is diagnosed with AS prior to learning to drive, then certainly there would seem to be a need for the insurers to know about it, though I can't see any way that this could effect an Insurance premium unless there is statistical evidence to show that drivers with ASD fall into some sort of high risk catergory. I've never heard of any such evidence, and any attempt to impose a premium based on an assumption that this might be the case would surely be discriminatory?

In the case of an adult being diagnosed AFTER learning to drive, then any impact of the disabilty (if there actually was any) would be reflected in their driving history - and their performance during the driving test - the same as anyone else, and effect their (ie) no claims bonus accordingly. You can't 'catch' or acquire ASD: if it was there but undiagnosed, the diagnosis wouldn't have any impact whatsoever on their post diagnosis functioning...

I'm certainly not challenging what you say, 'cos i know daft rules do get overlooked until challenged, but i would have thought if a test case was ever brought before a judge the Insurers would be told to take a running jump.

The other thing I'd have thought relevant was a medical report: If somebody had driven without incident for years, and was regarded as medically fit to do so, how would a new diagnosis of ASD undermine that?

 

Interesting Thread!

L&P

BD

[Zemanski]

To understand your difficulties within the context of having AS has to be better than thinking it is because you are inadequate all your life

If you can get that understanding without a diagnosis (by your child being diagnosed and your partner doing a PGCE in AS, for instance ) is there any other reason why you should go for diagnosis?

As baddad and Canopus said earlier, there is also the down side of being labelled AS. There are a lot of unenlightened people (and institutions) out there, and I suspect that a label can be as (or more) disabling than the AS itself.

 

nemo

(broadband problems)

[Lynden]

We are pretty sure my hubby has aspergers, and knowing this does help us understand his ways/our differences better but we dont see the point of an official diagnosis because it would affect his life as it is at the moment at all.

 

Lynne x

[bid]

Nemo,

 

As I said, if someone is happy not to have a dx then that's fine.

 

But I think it's just as valid to want a dx.

 

It's a personal decision, and as such should be respected. Why do you feel able to question another person's choice? I wouldn't question your decision not to go for a dx. You have absolutely no knowledge of my life. And I have no knowledge of your life, which is why I wouldn't question your right to choose.

 

Bid

 

And not everyone is as lucky as all of you who have a good insight into your difficulties without the need for a dx.

[oracle]

Are you sure on this one, Canopus, 'cos it sounds discriminatory to me?

 

I'm afraid he is correct Badad. There was a HUGE debate not so very long ago on Aspergers UK - A Yahoo Group. AS is one of those disabilities whereby if you disclose that you have a dx of AS - and it's illegal not to - they will write to your doctor(s) to see how it would affect you if you were driving. It is sort of viewed as a personallity disorder. Now do not shoot the messenger it's not me saying this. There are not actually stopping someone with an ASD from driving but there is talk that they will have to sit an additional test. More like an aptitude test to see how they will react in stressful situations. I am told that it is also to see how they would react if provoked. We are not there yet and there has been lots of representation to NAS and other organisations but I am afraid that the hoops required to jump through are getting increasingly smaller

 

Carole

Edited November 24, 2005 by carole

[Kathryn]

Reading Liane Holliday Willey's account of her earlier life there were a few electrifying moments where I recognised myself. I'm pretty sure I have some traits but not enough for a dx. I don't feel for myself, there is a need.

 

I struggle with many things that seem to come easily to other people. I think I understand why now, I've learned to accept who I am and I've stopped beating myself up for not trying harder.

 

Ironically, I think this is why my daughter went undiagnosed for so long. I could see that she was very like me in many ways: she had the same strengths and weaknesses and her development was similar to mine. I did OK in the end and I suppose I just assumed she would too.

[nellie]

My husband was diagnosed with AS a couple of years ago at the age of 52, my son was diagnosed with AS in June this year at the age of 24.

 

Seeking a diagnosis is very much a personal choice. It was a huge relief to my husband and son to have an official diagnosis after many years of personal struggle. They both needed it to be ?rubber stamped?.

 

My husband spent 5 hours relating his 'differences' to the psychologist during diagnosis and was very annoyed when he was told time was up, as he had lots more to say.

 

Nellie xx

[Tez]

If you can get that understanding without a diagnosis (by your child being diagnosed and your partner doing a PGCE in AS, for instance  ) is there any other reason why you should go for diagnosis?

 

I think that is what I'm trying to clarify in my own mind. I have without doubt got AS. I have struggled all my life to fit in and to cope. I do not need the diagnosis for understanding. However, I am currently in a position where I can limit the interaction that I have with others and I do not feel socially isolated by being at home and not socialising and engaging with the world.

 

I can also see the downside to diagnosis and to be quite frank, I would find it very difficult to go through the diagnosis process, to the point where I think it might be counterproductive. However, I am very aware that because my son was undiagnosed when his problems escalated there was a long delay before he started to get the support he needed, despite it being asked for when his troubles began, he needed a diagnosis before it was provided. This delay meant that his problems escalated beyond control. Bid had similar concerns when her father was in hospital earlier this year. She was concerned that some of his "normal" behaviours would be misconstrued because of lack of diagnosis and it is these issues that have made me think about diagnosis with a more open mind.

[bid]

I also wonder if the people who have enough insight to understand their difficulties and cope with them would actually meet the diagnostic criteria?

 

I have struggled every day of my life with the things I find difficult. I have a Higher degree (with a distinction), but I've never even been able to cope with the kind of job that would pay enough to get a mortgage. At the moment I am having real problems at work because I've been given an NVQ2 assessor who is someone I don't know, and nearly all of my evaluation is through talking to me and observing me. I find all of this so difficult it's making me ill and I'm thinking about leaving my job, even though I love it I've tried to explain my problems, but why should they make an exception just for me...perhaps if I had a dx they would help me more?

 

As for asking for help...I know from all the trouble with my poor dad over the summer that it does no good at all just to say 'I have AS'. You are immediately asked who gave the dx..and when you reply that 'you just know', the idea of having AS is dismissed, or you have to start fighting for a dx when you don't have the time to do so...

 

So, if you are fortunate to have the insight to understand and cope with your AS, good for you...but don't criticise the people whose lives have been marginalised and constrained by their difficulties for seeking professional help and a dx.

 

Bid

[oracle]

Hi Bid

 

You sound very down at the moment This is very easy for me to say and I do believe that you have always had problems with the things that you are telling us about. BUT please do not let them weigh heavy on your mind having been told that you may have AS yourself this week.

 

You are a truly lovely lady who gives of herself to others. That makes you a special person in my book. Especially to us here on this forum. My Dad was a great believer that we all had a path to follow and so what if that path does not pay the mortgage, neither does mine and it never has. But that does not mean that we have not lived a worthwhile life. You have an inner strength that AS or not not many of us have.

 

If you do have AS then you also have an amazing inner strength that many with AS do not have. That has got to be a positive hasn't it

 

<'> Carole

[Zemanski]

Nemo,

 

As I said, if someone is happy not to have a dx then that's fine.

 

But I think it's just as valid to want a dx.

 

It's a personal decision, and as such should be respected. Why do you feel able to question another person's choice? I wouldn't question your decision not to go for a dx. You have absolutely no knowledge of my life. And I have no knowledge of your life, which is why I wouldn't question your right to choose.

 

Bid

 

And not everyone is as lucky as all of you who have a good insight into your difficulties without the need for a dx.

Bid. I apologise sincerely if that's how it came across, but that was not what I intended at all . I'm very sorry it upset you. It was not aimed at you personally, but was supposed to be a general question. If you replace the word 'you' with 'one' throughout, does that make more sense?

 

I would never question anybody else's decision to go for a DX, in fact quite the opposite. Com's diagnosis changed all our lives for the better. Since Com was diagnsed, and further since Zemanski started her course, AS is the main topic of conversation in our house - we discuss theories/symptoms/strategies on an almost daily basis.

Your earlier post mentioned the benefits of knowing you have AS in terms of information and understading. I have more information on AS at my fingertips than any GP, and a wonderfully understanding family.I was just wondering if there were any practical benefits to DX as an adult. That was all.

 

Very sorry to have offended you

 

nemo

[Flora]

bid, I'm totally with you on this one. I could never get a dx because my mum is adamant that I am fine and have always been fine (they often want someone who knows you well to be part of the dx process for adults). However, I know for a fact that I'm on the spectrum. I have always had difficulty with social situations, relationships with colleagues at work etc; I've also always suffered from debilitating depression (as far back as I remember). I regularly become focussed on something to the exclusion of all else. I am very sociable but regularly go through periods where I don't want to see anyone or face the world. My partner often complains that he can't get near me, I find physical contact unbearable at times. I also have loads of sensory issues with labels on clothes, certain fabrics, light sensitive etc. I just used to think that I was stupid or incompetent. I've always compensated by 'acting' a part which I find really hard and stressful and is probably why I am so tuned in well and understand exactly what my poor son goes through.

 

I was so glad to read your recent post regarding your referral for assessment (and amused by the comments of your husband and other folk on here ). If someone offered this to me I'd take their hand off, but I don't feel up to seeking it out for myself.

 

I'll be watching out for updates when your referral comes through etc.

 

Lauren X

[Canopus]

I'm afraid he is correct Badad. There was a HUGE debate not so very long ago on Aspergers UK - A Yahoo Group. AS is one of those disabilities whereby if you disclose that you have a dx of AS - and it's illegal not to - they will write to your doctor(s) to see how it would affect you if you were driving. It is sort of viewed as a personallity disorder. Now do not shoot the messenger it's not me saying this. There are not actually stopping someone with an ASD from driving but there is talk that they will have to sit an additional test. More like an aptitude test to see how they will react in stressful situations. I am told that it is also to see how they would react if provoked. We are not there yet and there has been lots of representation to NAS and other organisations but I am afraid that the hoops required to jump through are getting increasingly smaller.

 

It's the insurance companies I am most concerned about. Insurance companies are nasty ###### that only exist to make a profit and will do anything they can to increase premiums and refuse to pay out. All insurance companies now have access to a central computer database so any shenanigans with one insurance company will be found out by all others.

[bid]

Thank you, Nemo

 

And thank you Carole and Lauren for your kind thoughts.

 

Bid

[Kathryn]

Bid,

 

Sorry to hear about your problems at work. <'> <'> . It's an extra stress you don't need.

 

love

 

K x

[baddad]

I'm afraid he is correct Badad. There was a HUGE debate not so very long ago on Aspergers UK - A Yahoo Group. AS is one of those disabilities whereby if you disclose that you have a dx of AS - and it's illegal not to - they will write to your doctor(s) to see how it would affect you if you were driving. It is sort of viewed as a personallity disorder. Now do not shoot the messenger it's not me saying this. There are not actually stopping someone with an ASD from driving but there is talk that they will have to sit an additional test. More like an aptitude test to see how they will react in stressful situations. I am told that it is also to see how they would react if provoked. We are not there yet and there has been lots of representation to NAS and other organisations but I am afraid that the hoops required to jump through are getting increasingly smaller 

 

Carole

Hi Carole -

certainly wouldn't dream of shooting the messenger, and i hope that isn't how it came across in response to Canopus' original post...

The point I was making is that an ASD is a lifelong illness, it's not something you can 'catch', so any implications in (ie) a driving test or as a road user would have existed throughout your driving career, and would be reflect accordingly on your insurance premiums... You're not suddenly going to start driving into trees, running over old ladies just because of a dx, 'cos - in terms of your driving ability, the dx doesn't change anything. There already IS an aptitude test, it's called the driving test! It doesn't come more stressful than that!

It is my personal observation (and I think there might have been some research to back it up in theory at least - something to do with brain hemispheres/visual accruity etc) that many asian people are less confident/skilled drivers than whites (and, yes, I know that Silicon Valley is full of Asian computer geniuses with Aspergers, so that might be a bad example!)... i think any Insurance company would have a difficult time justifying a levy based on ethnicity, though, without some SERIOUS research being undertaken!

Surely this would be the same thing?

[Another observation: I have two sisters (both NT) who passed their driving tests YEARS ago. One only drives an automatic, 'cos she's not confident about gear changes, neither of them can park to save their lives and BOTH will drive miles out of their way to avoid driving even for short stretches on motorways! Now, i wouldn't dream of saying that applies to all women (even in my most ish mood!), but it is a fact that women drivers are generally regarded as a lower insurance risk... On the two occassions that MY car has been hit by women drivers, both were covered as second drivers on their HUSBAND's insurance ...]

If you've got any more info on this, I'd be glad of it, purely and simply because this does seem so discriminatory. If the NAS are aware that Insurers are trying to create such a clause, they ought to be challenging it with an (intellectual) test case BEFORE the event, not wait until a real situation develops...

Sorry to hijack this thread over such an unrelated issue, but if there's one thing guaranteed to get me on my soapbox it's the nasty whiff of discrimination!

 

I should have been a judge !

L&P

BD