Does telling people you have AS help or hurt?

[prof]

In two posts in separate threads, very different experiences seem to have been reported concerning reactions to letting people know you have Aspergers. One was negative (http://www.asd-forum.org.uk/forum/Index.php?/topic/27404-advantages-of-diagnosis/page__view__findpost__p__315517) and one was (I think) positive. The negative reaction related to people known in a social context - a friend and a neighbour - and the other in a work context.

 

My caughter knows I have AS because her son has it. It helped her, I think, to understand some difficulties in our relationship going back to her childhood. I told a former student I now work with who seemed to dismissed it as an eccentricity and it has made no difference. I am treading carefully here and I would welcome a wider range of reports about the experiences of people with AS in telling family, social friends and acquaintances and work colleagues.

[justine1]

Hi

 

Well my boys that have ASD are 8 and 5. Firstly I would not tell people that they have ASD unless they actually have a diagnosis, with my 5 year old his diagnosis came after 8months of going from various professionals,even though I suspected ASD because his older brother aready had the diagnosis I never actually told anyone until I got his full diagnostic report.

 

I also do not tell people that don't need to know, so I work on a "need to know" basis. It is rare I tell anyone actually. With Sam (8) I have allowed him to decide who should and should not know and when.Example being that because he is at ASD unit he feels comfortable for people at school to know (outside the unit) I guess he feels protected and nobody will judge him, but with local kids nobody knows. I have had problems with my neighbours,mostly cause of my interfering ex,but also because they do moan about noise (Sam's crying and jumping)despite this I have not told them. When they made the complaint a housing officer came over and I told her that I have 2 boys with ASD and she made note of it. However where I was living before I felt more comfortable with my neighbours and they did know, one of my previous neighbours has a daughter with GDD and she was attendng special school she also got her diagnosis from the same place my boys got theirs so it helped to talk to someone.

 

My family know,well my mum and brother already suspected with Sam and knew Dan had speech problems. My mum has sensory integration disorder so she understands from that point of view and my brother has had 3 major strokes so he has processing and speech problems. My dad is understanding to a point but he has never read up on ASD so I don't think he fully understands.

 

I do think my boys should tell people they are close to but only when they are comfortable to do so. With regards to employment I would say it should only be necessary to tell the employer if their ASD would somehow affect their performance or the work would affect their ASD. Most importantly I would never let them use it as an excuse or reason for behaviour or to avoid doing certain things in life.

[darkshine]

I'm pretty sure I was the negative aspect

 

When I told my parents they went into outright denial and they still are.

 

When I told an acquaintance he was like - well that's ok, my brother has it.

 

I haven't told anyone else apart from relevant people in the MH service - no more family, no other friends.

 

I think everyone is different prof - and also maybe the way that people are told will make a difference too...

 

If you want any more thoughts I am happy to oblige - just say so - and don't let my negativity wear you down - as I said - I think everyone's experience is different to a degree

 

Regards

 

Darkshine

[indiscreet]

name='darkshine' timestamp='1321356706' post='315835']

I'm pretty sure I was the negative aspect

 

No, I think it was me!

 

Prof, after giving it more thought I would say that as far as colleagues are concerned, with those who you feel may have been puzzled, upset or offended by your behaviour on occasions letting them know that you are AS can only help.

 

Close family and friends are tricky because some will go into denial, but others may be relieved and understanding.

 

I found that telling people is very much a step into the unknown because I got such different reactions and it's made me cautious about who I tell in the future.

Edited November 15, 2011 by indiscreet

[bid]

My very personal experience was that I didn't tell anyone I had AS before I was diagnosed. A few people close to me knew I had been referred (oh, and the forum ), but I had an absolute horror of telling people I 'had AS' only to find out at my assessment that I didn't! I felt that it would be lying to say I had AS before a dx.

 

Once I had been formally diagnosed I told my wider family and my line manager and my team.

 

I have had a largely very positive experience around dx, except from my in-laws I have always tried very hard to look outwards and push myself to do as many of the things that I find difficult as possible. But that's just me

 

Bid

Edited November 15, 2011 by bid

[darkshine]

I had an absolute horror of telling people I 'had AS' only to find out at my assessment that I didn't! I felt that it would be lying to say I had AS before a dx.

 

Once I had been formally diagnosed I told my wider family and my line manager and my team.

Bid's right - its best to do after a formal dx - what a nightmare that'd be if you told everyone and then no dx!

 

I'm a weirdo and never told anyone I was even having a dx because I didn't realise what was happening cuz I was too busy in denial land - and it was at least 4 months after results of dx that I even told another 2 people that I see from service I use I sometimes wonder if I'm still in denial or just ashamed or just can't be bothered with endless discussions about things that I cannot explain - as other than this forum only about 4 people know about it (other than docs and stuff).....

[prof]

Sorry not to have come back on this earlier. I have been away for a few days.

 

First, it seems sensible to me to tell only those who have some reason to know. I am wondering particularly about people with whom I have been friendly who become more distant or even hostile. (I would probably tell the former but not the latter.)

 

As for work situations and going a little off-topic: speaking for myself (but I suspect this is true much more widely), I believe that there are benefits from AS. I do not feel any social pressure to conform in what I think or how I approach my work. It is not surprising to me that there is a strong suspicion that scientists such as Einstein and Newton were ASD. An ASD specialist in Cambridge reckoned publicly that half the scientists he knows in the university are ASD. Obviously, these are all high functioning (is that HF?). But it would be surprising to me if the benefits of being able to think with fewer social constraints were not to have benefits outside of academics.

 

I know, because I once tried, that I could never be successful in a career that involved never offending people. But we might also be good, for example, at considering plans and strategies for future action -- generally, in coming up with ideas and suggestions that are "outside the box".

 

Bringing this back to the topic, I am wondering if there is scope for making organisations value people with AS by telling them about the condition after we have made some successful (or, at least, interesting) suggestions. Might this benefit the individual? people with AS more generally? Might it help employers and colleagues to exploit the benefits of AS? Would the benefits make them and others more tolerant of the limitations of our social skills?

 

I have no answer myself. If anyone has tried anything like this, it would be good to know. As my career is winding down now -- or at least I should be winding it down -- I am minded to begin exploring the consequences of telling selected colleagues. I don't now have much to lose. I will report the outcomes as and when I know them. Who knows? It might even be possible that some day, for some jobs, a cv (resume) will be deemed to be stronger for noting that the job applicant has AS.

[justine1]

Sorry not to have come back on this earlier. I have been away for a few days.

 

First, it seems sensible to me to tell only those who have some reason to know. I am wondering particularly about people with whom I have been friendly who become more distant or even hostile. (I would probably tell the former but not the latter.)

 

As for work situations and going a little off-topic: speaking for myself (but I suspect this is true much more widely), I believe that there are benefits from AS. I do not feel any social pressure to conform in what I think or how I approach my work. It is not surprising to me that there is a strong suspicion that scientists such as Einstein and Newton were ASD. An ASD specialist in Cambridge reckoned publicly that half the scientists he knows in the university are ASD. Obviously, these are all high functioning (is that HF?). But it would be surprising to me if the benefits of being able to think with fewer social constraints were not to have benefits outside of academics.

 

I know, because I once tried, that I could never be successful in a career that involved never offending people. But we might also be good, for example, at considering plans and strategies for future action -- generally, in coming up with ideas and suggestions that are "outside the box".

 

Bringing this back to the topic, I am wondering if there is scope for making organisations value people with AS by telling them about the condition after we have made some successful (or, at least, interesting) suggestions. Might this benefit the individual? people with AS more generally? Might it help employers and colleagues to exploit the benefits of AS? Would the benefits make them and others more tolerant of the limitations of our social skills?

 

I have no answer myself. If anyone has tried anything like this, it would be good to know. As my career is winding down now -- or at least I should be winding it down -- I am minded to begin exploring the consequences of telling selected colleagues. I don't now have much to lose. I will report the outcomes as and when I know them. Who knows? It might even be possible that some day, for some jobs, a cv (resume) will be deemed to be stronger for noting that the job applicant has AS.

I am sorry but I still think unless you have a diagnosis, by a qualified professional, then you should NOT tell anyone. It is deceitful or even fraudulent. It would be the same as claiming to have any other health/medical condition when you don't for example some people claiming to have cancer to get sympathy and sometimes even freebies and money,its morally wrong.

 

As for your question regarding work,unfortunatley we do not live in a "disability friendly" world, I think most people(with ASD or any other disabilty) have to adapt,adjust and overcome certain barriers,rather than the job adjusting to them. Thats not to say adjustments cannot be made but it does depend on the job and the manager/employer. I personally prepare my boys for the real world teaching them the social aspects of life including using a phone for example,its not easy but good to start now.

 

As I mentioned I have a brother who has suffered 3 strokes he has asphasia(think thats right) is physically disabled on the right and he was right handed,he also suffers from epiliptic fits. He has worked since 2 yrs after the stroke up until a year ago (7 years) but he is suffering physically,he now is training to be a teaching assistant. He has never told any employer,he has had three in the 7 years,about his problems they just know he has a disability,therefore he has no help/support within work. Where he does practice/train now they know him because his son attends the school,and are aware of his difficulties luckily the young kids he works with are so accepting that they see beyond it all.

 

I also have a brother with bipolar disorder,he also suffers from epilipsy,he is on three different meds and sees a psychologist. He has been employed since he came to the UK a year ago and he too never disclosed his disability.

 

So I do think it depends on the person,the job and the understaning of the employer.

[BaffledOwl1970]

Hi - I suspected I had Asperger's for a long time before I was diagnosed. I had planned not to tell my mother, but she had to give information for the assessment. She and my partner were the only ones who knew until I was diagnosed, then I told people at work. Most had heard of it, but didn't know how it affects people - some said, "That explains alot".

[prof]

I am sorry but I still think unless you have a diagnosis, by a qualified professional, then you should NOT tell anyone. It is deceitful or even fraudulent. It would be the same as claiming to have any other health/medical condition when you don't for example some people claiming to have cancer to get sympathy and sometimes even freebies and money,its morally wrong.

 

As for your question regarding work,unfortunatley we do not live in a "disability friendly" world, I think most people(with ASD or any other disabilty) have to adapt,adjust and overcome certain barriers,rather than the job adjusting to them. Thats not to say adjustments cannot be made but it does depend on the job and the manager/employer. I personally prepare my boys for the real world teaching them the social aspects of life including using a phone for example,its not easy but good to start now.

 

As I mentioned I have a brother who has suffered 3 strokes he has asphasia(think thats right) is physically disabled on the right and he was right handed,he also suffers from epiliptic fits. He has worked since 2 yrs after the stroke up until a year ago (7 years) but he is suffering physically,he now is training to be a teaching assistant. He has never told any employer,he has had three in the 7 years,about his problems they just know he has a disability,therefore he has no help/support within work. Where he does practice/train now they know him because his son attends the school,and are aware of his difficulties luckily the young kids he works with are so accepting that they see beyond it all.

 

I also have a brother with bipolar disorder,he also suffers from epilipsy,he is on three different meds and sees a psychologist. He has been employed since he came to the UK a year ago and he too never disclosed his disability.

 

So I do think it depends on the person,the job and the understanding of the employer.

 

Thanks, Justine, for your candid comments.

 

I wonder if there are two issues here relating to the reasons for telling people about AS and one about diagnosis.

 

The first is in a social, non-work context. Are people more likely to, in your apt phrase, see beyond the symptoms if they know that the behaviour is part of a set of recognisable symptoms that occur together with sufficient frequency as to be a recognised syndrome? The reason for sometimes insensitive behaviour is not a lack of care or concern but rather a (possibly inherited) problem.

 

The second of these issues is in the context of work. It does seem to me that there is evidence that persons with some forms and degrees of ASD are well placed to make a unique contribution in the right sort of work. ASD undoubtedly causes problems for those who have it. My point was that it may also confer benefits and, if it does, (i) these should be exploited in a way which enables the individual to feel that the AS or other ASD is not wholly problematic and (ii) to publicise the positive aspects of the disorder or syndrome to employers. It seems to me that each of these would have advantages. I agree that 'we do not live in a "disability friendly" world'. I also note that it is sometimes hard to diagnose AS in adults because we do 'adapt, adjust and overcome certain barriers.' My question concerns whether we can help employers and others to adapt for their benefit and the benefit of (at least some) people with AS.

 

On the question of diagnosis: A syndrome such as Asberger's is a set of recognised symtoms that frequently occur together. There is no generally recognised reason for the syndrome. This is unlike cancer where, even if we don't know why cancers start, there is a clear physiological cause of observed symptoms and, in an increasing number of cases, effective means of treating them. So on the basis of an earlier discussion we had, my view is that a diagnosis is indicated in cases where the diagnosis itself opens doors to support or some effective treatment. Otherwise, matching symptoms to syndrome is really all anyone can do -- whether a professional or not.

Edited November 18, 2011 by prof

[bid]

There has been more than one forum discussion about this previously, but my personal opinion is that it is wrong for anyone to say that they have AS unless they have a formal dx.

 

A very dim view would be taken if someone self-diagnosed any other serious condtion, and then went on to tell others that they categorically had it.

 

Bid