Advantages of diagnosis?

[prof]

Some background:

 

I have just joined this forum because Aspergers makes sense of much of my life experience. I am 67, I have had a reasonably successful career in academic research largely because I don't feel social pressure to think conventionally, but I don't make friends easily and I keep them less easily, I now work from home and don't really mind the absence of direct social contact. At school I was always thought to be socially immature. Though I have been in a mostly stable relationship with the same partner for some 40 years, before that I would need to break off relationships after about three weeks. I can think of many events in my life where my reactions were clearly socially inappropriate. Though I could often understand that after the event, I was unable to anticipate the effects of what I have said and written to people. I have been exceptionally fortunate in that I went to a very tolerant school and had an academic career in which, after a long period of difficulty in several institutions, I was given support to set up and develop a small research institute which I was able to lead and manage successfully. I was not a good teacher for most students though I did seem to be able to attract and engage with the best students. I have been led to consider that I have Aspergers Syndrome as a result of having a grandson who is severely afflicted with AS.

 

I am actually pretty happy. I currently have a European-funded research project that is very important to me. I have a lot of virtual interaction with professional colleagues, a number of whom I (and I believe they) consider to be friends -- though with infrequent direct contact. The downside is that my wife would like to have much more engagement with me and, though I love her dearly, I often find it difficult to break off from my work and I am relieved to return to it. I am not ready to retire and seem still to be making progress and influencing colleagues. I would not like to lose that focus. But, at the same time, I am concerned that my focus causes some distress to my wife. So I am conflicted about any consequences (which a conventional person might call benefits) of treatment for Aspergers.

 

My question:

 

I have seen in the forum that a number of contributors have said how important it was to them to have a formal diagnosis of AS. I am wondering what they (or you) have found to be the benefits of the diagnosis. Has anybody found that treatment gave some balance to their lives that was previously lacking? Has anybody found that they made and enjoyed long-term friendships after some treatment that would not have been possible before the treatment? Is there some reason other than access to treatment to have a formal diagnosis of AS?

[justine1]

Some background:

 

I have just joined this forum because Aspergers makes sense of much of my life experience. I am 67, I have had a reasonably successful career in academic research largely because I don't feel social pressure to think conventionally, but I don't make friends easily and I keep them less easily, I now work from home and don't really mind the absence of direct social contact. At school I was always thought to be socially immature. Though I have been in a mostly stable relationship with the same partner for some 40 years, before that I would need to break off relationships after about three weeks. I can think of many events in my life where my reactions were clearly socially inappropriate. Though I could often understand that after the event, I was unable to anticipate the effects of what I have said and written to people. I have been exceptionally fortunate in that I went to a very tolerant school and had an academic career in which, after a long period of difficulty in several institutions, I was given support to set up and develop a small research institute which I was able to lead and manage successfully. I was not a good teacher for most students though I did seem to be able to attract and engage with the best students. I have been led to consider that I have Aspergers Syndrome as a result of having a grandson who is severely afflicted with AS.

 

I am actually pretty happy. I currently have a European-funded research project that is very important to me. I have a lot of virtual interaction with professional colleagues, a number of whom I (and I believe they) consider to be friends -- though with infrequent direct contact. The downside is that my wife would like to have much more engagement with me and, though I love her dearly, I often find it difficult to break off from my work and I am relieved to return to it. I am not ready to retire and seem still to be making progress and influencing colleagues. I would not like to lose that focus. But, at the same time, I am concerned that my focus causes some distress to my wife. So I am conflicted about any consequences (which a conventional person might call benefits) of treatment for Aspergers.

 

My question:

 

I have seen in the forum that a number of contributors have said how important it was to them to have a formal diagnosis of AS. I am wondering what they (or you) have found to be the benefits of the diagnosis. Has anybody found that treatment gave some balance to their lives that was previously lacking? Has anybody found that they made and enjoyed long-term friendships after some treatment that would not have been possible before the treatment? Is there some reason other than access to treatment to have a formal diagnosis of AS?

Hi and welcome

 

I am a mum of four and two have ASD. I cannot obviously give any experience regards to adult diagnosis, others will, but just give my thought and opinions. For one thing there is NO treatment or cure for ASD, it is a life long condition. With my children ,from a medical point of view there is nothing they can do other than just review how they are doing once a year to see if behaviour strategies are working and if there are any co-morbid conditions.The behaviour strategies are enforced by myself I do not get outside help with this and it is hard to know whether I am helping my child or just changing them in order to be accepted by society, only time will tell.Regards to education it has helped me get a statement for my 8 yr old and he is at a special unit and is doing well, my other son for now is doing well at a small mainstream though this may change in 2 years time when he changes from infant to junior as it is bigger and less 1:1 support and more challenging work. So that is a positive.

 

I do think having a formal diagnosis as a child or adult gives you more understanding of your self, the re-assurance that you are not alone or just weird. I definatley don't think it would be a reason or excuse for negative behaviour and you will not always get understanding from everyone you meet. Some people still have many mis-conceptions about ASD and some just think its a label for badly behaved kids or adults who just chose not to conform with society.

 

It all depends on you as a person and how you feel a diagnosis will help you. If you feel changes should be made you have to make those changes and it should not take a diagnosis to do that. If you are happy within yourself and seem to be getting on well with life, there may not be any benefit in a getting a diagnosis. It is your decision in the end.

[dekra]

I have just taken the first tentative steps on the path to adult diagnosis myself. Similarly to yourself I first seriously considered AS as a possible condition myself whilst researching my 4 year old son's problems - he is likely to be HF ASD not AS but so much rang true about my life that I felt I should get professional guidance rather than wonder "Am I?" for the rest of my life. I am a mature student studying nursing and at 36 years old I am in a stable relationsship. Hy husband is very supportive. I feel for me pursuing a dx would help me understand myself more. Just the belief I have AS has helped massively already. I have made some poor choices in my life and whilst I do not blame AS it has obviously been a determining factor in all decisions I have made in my life both good and bad. I think a dx will further help me in that I can use my previous experiences combined with my knowlesge of both myself and AS and try to avoid similar mistakes in the future. My life is good at the moment and I want it to stay that way. We are all the product of our previous experiences and if we don't learn from them then we are doomed to make the same mistakes again. That is true for NT people as well as anyone on the spectrum of course.

 

I think you need to ask yourself what will a formal dx gain you? Are you the type of person that will find some comfort in understanding or do you need the confirmation of professional dx? At your stage of life and with the success you have achieved and hurdles you have overcome I would assume you have developed plenty of coping strategies and you may not find anything helpful by a formal dx now. Personally it has become an obsession for me, I have a deep seated need to have confirmation. For my little boy however dx is much much more important as his whole education is ahead of him and I want him to have the best opportunities he can.

[bid]

Welcome to the forum

 

In many ways you are very like my dad. He had a successful academic career as a lecturer in special needs and social work, but had always been seen as extremely eccentric which did cause difficulties professionally and personally, although my parents were married for over 50 years.

 

It was when he started reading about ASD after my eldest son was diagnosed that he began to recognise himself and his difficulties. I have always said that I'm sure the railway fanatic Tony Attwood mentions meeting on a train in the foreward to his Guide to AS was probably my dad!!

 

For my dad and the rest of us, this was enough to help us all have a better understanding of him and his life. So he never felt the need to pursue a dx, although at the end of his life he was identified as having what was termed 'mild autism' during mental health assessments. He was also extremely close to my son and a huge support to us as we went throught the dx process with him.

 

At the suggestion of my younger son's paediatrician I was assessed for AS myself, and was diagnosed when I was 41.

 

I think Justine makes very good points in her post.

 

Bid

[prof]

Many thanks to all three of you for your helpful and informative replies.

 

I understand that Aspergers wasn't widely recognised until the mid-1990s which would explain why we have three reports (including Bid's father) of adult recognition of the condition. Interesting that all four of us came to understand our condition (is that an acceptable word for AS?) through experience with our children or grandchildren.

 

Personally, I don't feel the need for a formal, professional diagnosis unless that were the gateway to some sort of treatment or help that would be useful at my age to me or my family. I do wish I had had some recognition and advice as a child because that would have saved me from some bad choices and perhaps helped me to keep some friends whose loss of friendship I regret. For now, Justine's advice that "If you feel changes should be made you have to make those changes and it should not take a diagnosis to do that" seems to me to go to the heart of the matter.

 

For now, recognition that I have AS is sufficient. My obsessions lie elsewhere -- mainly at present in my work. Am I right in thinking that finding balance is a struggle for pretty much everyone with AS?

 

Once again, thanks to you all. If it will be useful to anyone for me to share my experiences with and as a result of AS, I hope to be able to do so.

[darkshine]

Hello Prof For me I see very little in advantages to diagnosis when thinking about treatment (as an adult). I am 30. I have been juggled from person to person in the MH (mental health) service for approx 10 years now. I was diagnosed officially this February. Since then treatment is non-existent for AS, I can get help for MH but not AS. All the people I see want to do is send me to AS social groups when I need to address other issues first in order to even get to these groups and as far as actual help for MH has gone so far this has been made up of appointment after appointment to no avail as yet (9 months seems a huge waste of time while they dither about).

 

I have been writing a report (not for anyone in particular just for me to let off steam) I do not believe adults are given sufficient or appropriate support before, during or after diagnosis. A lot of people talk about self help, or enabling people etc but this most definitely has not happened for me.

 

Are you rich? You might be able to pay for treatment - cognitive behavioural therapy is supposed to help some people (whether they have AS or not) - I know its rude to ask someone if they have money but in my locale at least they by far favour medication as treatment, to even be assessed has taken me at least 2 years.

 

Other than that - from what I've read and what I've seen on here the main feeling is one of relief (I did not and do not have this feeling) but many seem to, getting a diagnosis seems to help people understand why they feel the way they do, it provides an explanation for why they have felt "different".

 

Throughout this I have used the word treatment loosely. Technically whether you have AS or not you should be able to have a go at challenging areas in your life that need addressing - whether this requires diagnosis for you, or you feel that with the help of someone like a psychologist (for example) to help you work things out, I don't know, but for me, having a label has not helped resolve anything, sure, I can look at myself and understand certain things, and I can try to do things in life using this understanding to try to resolve issues (this has been largely unsuccessful so far) but as far as treatment goes I am not holding my breath.

 

Have you checked out the National Autistic Society website? It has an extensive list of treatments (which for me are either unavailable or for children) but the list is quite thorough nevertheless...

 

Best

 

Darkshine

[dekra]

I do think having a formal diagnosis as a child or adult gives you more understanding of your self, the re-assurance that you are not alone or just weird.

 

Amen to the whole "weird" thing.

 

How many years have I believed I just was not a likeable person and that people thought me weird. Maybe I am and maybe they do. Maybe I just think they think me weird and as a result I act weird so they then DO think I am weird. Oh the circles in my head!!!

[prof]

Amen to the whole "weird" thing.

 

How many years have I believed I just was not a likeable person and that people thought me weird. Maybe I am and maybe they do. Maybe I just think they think me weird and as a result I act weird so they then DO think I am weird. Oh the circles in my head!!!

 

Well that does raise an issue that is important for me and maybe for others. I, too, thought that in personal relationships I was just not very likeable. That goes back to childhood. It would certainly be interesting for me to know whether other people have found more tolerance -- seemed better liked -- if others knew of their AS. Maybe this should be a new thread -- about likeability and the effects of letting others know of our AS?

[lilnicki]

This is an interesting topic actually..... the old me before i was diagnosed or knew much about AS just thought i was unlike-able...... why else did i have no friends??...... I have just got married, and sent out an open invitation to all of my work colleagues ( roughly 50 people) to come to the evening reception......on the day not one person showed up. ( I have been working there 20 years!!).The old me would have taken it personally, and there would probably have been tears. The "diagnosed/better informed" me knows that this is most likely down to the fact that i don't talk to anyone, and don't ever engage in the usual "how was your weekend" kind of talk. I probably come across as very standoffish. If they knew about my diagnosis ( one or two DO know but the word hasn't got round yet)....i wonder how i would be treated.......an interesting debate!

[prof]

This is an interesting topic actually..... the old me before i was diagnosed or knew much about AS just thought i was unlike-able...... why else did i have no friends??...... I have just got married, and sent out an open invitation to all of my work colleagues ( roughly 50 people) to come to the evening reception......on the day not one person showed up. ( I have been working there 20 years!!).The old me would have taken it personally, and there would probably have been tears. The "diagnosed/better informed" me knows that this is most likely down to the fact that i don't talk to anyone, and don't ever engage in the usual "how was your weekend" kind of talk. I probably come across as very standoffish. If they knew about my diagnosis ( one or two DO know but the word hasn't got round yet)....i wonder how i would be treated.......an interesting debate!

[prof]

I hope you will keep us informed of the effects of people learning about your AS. There are some people I am going to share it with because I feel I have offended them for reasons I understand retrospectively but failed to anticipate with sufficient clarity to keep my mouth shut. If others are interested, I will report my experiences to the forum.

[philipo]

I feel the same as you prof about people i've offended but looking back on the whole they are people who've constantly abused me ,lied about me and took all my money and property.from where i'm standing my diagnosis is just another useful tool for my relatives to steal more from me.ask darkshine succintly put 'are you rich' ....as regards cbt because the nhs are mostly a loads of drug pushers who are in fact abusing people with asd/autisim/aspies bevcasue its much cheaper.i'm prpeared to die for what i beleive in because if i don't do the things i plan to do then their will be no help for one of my daughters and others ,becasue were working class and don't live in a health aithority that 'does' autisim.

 

 

Dr porter rochdales most eminent shrink 'we don't do autisim '

 

Top Cognitive shrink at North manchester general hostpital 'manchester does'nt recongise autisim'

 

death to the unbeleivers!!!if only mummy and daddy lived in hale barns or hebden bridge or totnes,economics and class is nearly everything.

[darkshine]

I don't think the health authority where I live "does autism" either... not for adults at least... I don't understand why there are treatments available to reduce problems and improve ability - it really does not make sense.... well it does - its cash innit?

[justine1]

I am not sure really how it works in every part of the country but where I live you can get CBT on NHS. I have a few friends who are mental health nurses (I am training to be an adult/general nurse) and they say CBT does not work for everyone and does not work for every condition, that is the reality.

 

Of course it takes time to get any type of appointment on the NHS but as the saying goes "you get what you pay for",in the sense that not everyone (like the unemployed) pay into the "NHS pot" but still take out from the pot,but that is the system. So when you work hard and struggle to get an appointment it is understandable the level of frustration but when you don't work I guess we should be grateful, many countries would love to have the level of healthcare we have here and the fact that it is free at the point of delivery.

 

As for the drugs I think it is quite normal for any professional to prescribe medication when a patient has any complaint,by doing so they can eliminate what does and does not work as bad as that may sound i.e that you a guinea pig, all medications are a bit of trial and error even basic meds like pain relief work for some and not others.You as a patient can refuse the medication and ask for an alternative it is your right.

[Kathryn]

Thankyou Justine for bringing a bit of sanity back to the discussion regarding the NHS - you voiced my thoughts. It's not perfect but there are many dedicated professionals working in it who are certainly not "drug pushers" - some of them, such as psychologists, can't prescribe drugs.

 

Free CBT is available to everyone through an initiative called Improving Access to Psychological Therapies. (IAPT). You can access it through your GP.

 

Prof, welcome to the forum and all the best with your journey of discovery.

 

K x

[indiscreet]

I, too, thought that in personal relationships I was just not very likeable. That goes back to childhood. It would certainly be interesting for me to know whether other people have found more tolerance -- seemed better liked -- if others knew of their AS. Maybe this should be a new thread -- about likeability and the effects of letting others know of our AS?

I'm not sure 'tolerance' is the right word. I found that friends and relatives who have known me a long time - and had accepted my 'weirdness' - understood much better after they knew of my AS diagnosis. However, when I told an ex-colleague and an ex-neighbour, both of whom I'd been quite friendly with but not close, they reacted with complete disbelief, basically, I think, because over the years I've become good at 'acting normal'.

 

There are some people I have to relate to who I don't like and I know there are some who find me unlikeable but I think that's true in everyone's life - not just those with AS - so I wouldn't tell them I'm on the spectrum because this might reinforce their dislike (always knew she was odd!) or come across as though I were looking for sympathy.

[prof]

I find there is a pattern to many social and work-based relationships. They start with warmth and may even develop some apparently genuine friendship. But after a while, the other party cools because, I sometimes see in restrospect, I have made some comments or observations that they find unsettling or maybe offensive. I guess there are cracks in my 'acting normal'. I am thinking at present that the problem arises because I understand the issues intellectually and from experience but not intuitively. With my lack of intuition, I really don't know whether in any one case whether a discussion of AS would help to preserve or develop a friendship. May I ask how your ex-colleague and ex-neighbour engaged with you in the longer run after their expressions of disbelief?

[indiscreet]

May I ask how your ex-colleague and ex-neighbour engaged with you in the longer run after their expressions of disbelief?

I'm still not really certain but I feel the relationships are not as good as they once were and I wish I hadn't told these people. Thinking about it afterwards I realised that when they referred to some social event where I had appeared to enjoy myself and I explained that actually I was putting on a good "act" that made me sound insincere and devious and understandably people don't like that.

[darkshine]

Of course it takes time to get any type of appointment on the NHS but as the saying goes "you get what you pay for",in the sense that not everyone (like the unemployed) pay into the "NHS pot" but still take out from the pot,but that is the system. So when you work hard and struggle to get an appointment it is understandable the level of frustration but when you don't work I guess we should be grateful, many countries would love to have the level of healthcare we have here and the fact that it is free at the point of delivery.

 

As for the drugs I think it is quite normal for any professional to prescribe medication when a patient has any complaint,by doing so they can eliminate what does and does not work as bad as that may sound i.e that you a guinea pig, all medications are a bit of trial and error even basic meds like pain relief work for some and not others.You as a patient can refuse the medication and ask for an alternative it is your right.

Its probably best to ignore my earlier comments, I totally allowed my personal circumstances to influence my posting

 

Thankyou Justine for bringing a bit of sanity back to the discussion regarding the NHS - you voiced my thoughts. It's not perfect but there are many dedicated professionals working in it who are certainly not "drug pushers" - some of them, such as psychologists, can't prescribe drugs.

 

Free CBT is available to everyone through an initiative called Improving Access to Psychological Therapies. (IAPT). You can access it through your GP.

 

Prof, welcome to the forum and all the best with your journey of discovery.

 

K x

But as part of a reality (despite my frustration)it probably is quicker to pay

 

As for drugs... they are a cheaper alternative whether we like it or not - there are several instances where medications can really help people control symptoms, but they are cheaper in terms of time especially compared to any kind of regular (even short-term) therapy.

 

As an opposite to my previously stated posts I would like to say that I have seen vast improvements in the NHS over the last ten years in mental health support especially - I'm just angry tha

[darkshine]

Of course it takes time to get any type of appointment on the NHS but as the saying goes "you get what you pay for",in the sense that not everyone (like the unemployed) pay into the "NHS pot" but still take out from the pot,but that is the system. So when you work hard and struggle to get an appointment it is understandable the level of frustration but when you don't work I guess we should be grateful, many countries would love to have the level of healthcare we have here and the fact that it is free at the point of delivery.

 

As for the drugs I think it is quite normal for any professional to prescribe medication when a patient has any complaint,by doing so they can eliminate what does and does not work as bad as that may sound i.e that you a guinea pig, all medications are a bit of trial and error even basic meds like pain relief work for some and not others.You as a patient can refuse the medication and ask for an alternative it is your right.

I totally allowed my personal circumstances to influence my posts

 

Thankyou Justine for bringing a bit of sanity back to the discussion regarding the NHS - you voiced my thoughts. It's not perfect but there are many dedicated professionals working in it who are certainly not "drug pushers" - some of them, such as psychologists, can't prescribe drugs.

 

Free CBT is available to everyone through an initiative called Improving Access to Psychological Therapies. (IAPT). You can access it through your GP.

 

Prof, welcome to the forum and all the best with your journey of discovery.

 

K x

But as part of a reality (despite my frustration) it probably is quicker to pay

 

As for drugs... they are a cheaper alternative whether we like it or not - there are several instances where medications can really help people control symptoms, but part of that is to accept that they are cheaper in terms of time, especially compared to any kind of regular (even short-term) therapy, and as such some professionals will turn to medication over therapy too much of the time IMO.

 

As an opposite to my previously stated posts I would like to add that I have seen vast improvements in the NHS over the last ten years in mental health and psychological areas especially... I guess what I find difficult is balancing appreciation for the help that is offered; with a prolonged bitterness at how long I've been passed around to even get to the point I'm at now and as such it influences my opinion.

 

Regards

 

Darkshine