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TalksToCats
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12 Jun 2012, 6:01 am

I know this discussed a lot on WP so if you think there's already been a good thread on this pleas point me at it...

I am still very much uncertain on seeking a diagnosis below are some of my reasons for and against. I have more reasons against than for but I think my reasons for might be really good ones - I'd welcome comments / you're own reasons for and against.

For diagnosis
--------------------
I'm really really curious (currently close to obsessed and it's currently distracting me from what I should be doing) as to whether a I'm on the spectrum / have AS - finding out one way another would give me some peace of mind.

If I'm on the spectrum, I'm definitley at the higher iq, higher functioning end, I'd be assessed at a local autism centre, maybe if am diagnosed this will help their research into autism in older women, and because I can be quite eloquent help understanding of those who can't express themselves as well

Sometimes I get very stressed and overwhelmed, a diagnosis (or not) might help me understand the triggers of this better.

Against diagnosis
----------------------------
Diagnosis for older women seems difficult / sometimes poorly done -would they get it wrong

I can get the diagnosis for free on the NHS but should I be using up scarce resources that someone else needs more than me?

If we're all on the spectrum somewhere, and I'm high clearly functioning, is finding out really necessary, is it not just perpetuating labelling odd/weird/different people when what we should be doing instead be fighting bigotry in all its forms

I'm not sure I need want any more labels - I'm currently trying to get rid of most of the existing labels I have

When I'm not depressed I generally do ok

Maybe it's just depression / anxiety due to stuff that happened when I was young,maybe I should just accept this, forgive where necessary and move on

Just because I'm weird, quirky, seem to think more like a man, don't like socialising, am not good with emotions, etc does not mean I need a label, I should just accept / embrace the good and bad things about the fact I'm different and move on...

I'm coping, kinda, most of the time...

-----

Any thoughts? comments?



bnky
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12 Jun 2012, 6:19 am

Just a few quick comments if I may.

There is a common misunderstanding that "since autism is a spectrum, everyone must be on it somewhere". This is not true.

It seems to be a common thing for people on the autistic spectrum to discount their need for perceived greater need of someone else. The NHS will not fund your diagnosis unless they feel it would benefit you. So, if they've agreed to funding, I'd suggest you take up the offer. - maybe it will help you, or maybe you will help them to help others.

yes, It's a label, but a label you don't need to disclose to anyone else... not even insurance companies



Max000
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12 Jun 2012, 6:32 am

TalksToCats wrote:
I know this discussed a lot on WP so if you think there's already been a good thread on this pleas point me at it...

I am still very much uncertain on seeking a diagnosis below are some of my reasons for and against. I have more reasons against than for but I think my reasons for might be really good ones - I'd welcome comments / you're own reasons for and against.

For diagnosis
--------------------
I'm really really curious (currently close to obsessed and it's currently distracting me from what I should be doing) as to whether a I'm on the spectrum / have AS - finding out one way another would give me some peace of mind.

If I'm on the spectrum, I'm definitley at the higher iq, higher functioning end, I'd be assessed at a local autism centre, maybe if am diagnosed this will help their research into autism in older women, and because I can be quite eloquent help understanding of those who can't express themselves as well

Sometimes I get very stressed and overwhelmed, a diagnosis (or not) might help me understand the triggers of this better.


Thats enough good reasons right there. Just do it.



squarepegroundhole
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12 Jun 2012, 6:38 am

I agree with bnky if you have the opportunity to seek assessment then I would.

I am middle aged and have only been diagnosed this year however have known for a long time that I was a square peg in a round hole ... I just didn't not know why till recently....

I believe knowlege is a powerful thing and that with diagnosis you can better cope and understand why you see the world the way you do.

As bnky said that it is up to you who you share this information with however you may find from time to time that it is helpful having a formal diagnosis.

I believe diagnosis does not fundamentally change who you are - you are still the same person as you were prior to diagnosis but it allows you to be more self aware of why you tick the way you do...



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12 Jun 2012, 9:01 am

As for me, I hadn't heard of AS before my 1st diagnosis last year (since confirmed 2 more times through additional testing) while at first I felt vindicated to my family who thought I was wasting my talents.

On the negative side, I have found it easier to embrace the fact that some things are more difficult for me than others. I hate to admit it, but I am less functional now because allow myself to be. I tried harder to have a job, and be social before my diagnosis. I wish I hadn't found out.


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Juliana
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12 Jun 2012, 10:13 am

I have no profound words of advice, but just wanted to let you know that I'm just as conflicted as you. I don't do well with ambiguity. I appreciate, heck, I need, definitive answers. And I think that is about 95% of why I scheduled an evaluation. As it gets closer though, I keep wondering if I should cancel it. I worry that a diagnosis will set me up for discrimination or higher insurance costs. And I wonder how necessary it really is. I know that I have faults. And whether or not it is due to AS doesn't matter much, I suppose. I can work to improve regardless of the underlying cause. Despite all that, I'm pretty sure I will go through with the evaluation myself because I want to know one way or the other. But I do worry that I would be better off not knowing.

I wish you luck in your decision. I don't think it is an easy choice.



drgoodietwoshoes
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12 Jun 2012, 10:52 am

I am also in the same boat. I *need* to be able to label things. I feel like if something is labeled then I can understand it because I can research it to death. I also have been perseverating on whether or not I am diagnosable. Over the last week or so I have decided that I may not want an actual diagnosis, but I do want to be treated by a therapist that understands the spectrum (which, I suspect might not be an option for those of you who don't have the freedom to choose your healthcare provider). I figured that since I live in a rural state and I'm a highly educated woman, it would be hard to be diagnosed anyway simply because of the lack of experts. However, it turns out that my husband cycles with a women who (he just found out) is one of the few child therapists in my state who specializes in asperger's and autism spectrum disorders and so sees a lot of the adults with asperger's. So I've made an appointment with her.
Also, at this moment I am at a scientific meeting and and I recently met a fellow colleague who actually spent a good deal of time working with people on the spectrum prior to obtaining his PhD. After a group of us post-docs spent the evening chatting and hanging out, he said, "I gotta tell ya, I'm thinking you are on the spectrum." So yeah, as many people have said before if you think you have it. . .you probably have it. I guess it is a matter of what you want to do with that knowledge. . .


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wokndead
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12 Jun 2012, 11:25 am

drgoodietwoshoes wrote:
I am also in the same boat. I *need* to be able to label things. I feel like if something is labeled then I can understand it because I can research it to death. I also have been perseverating on whether or not I am diagnosable. Over the last week or so I have decided that I may not want an actual diagnosis, but I do want to be treated by a therapist that understands the spectrum (which, I suspect might not be an option for those of you who don't have the freedom to choose your healthcare provider). I figured that since I live in a rural state and I'm a highly educated woman, it would be hard to be diagnosed anyway simply because of the lack of experts. However, it turns out that my husband cycles with a women who (he just found out) is one of the few child therapists in my state who specializes in asperger's and autism spectrum disorders and so sees a lot of the adults with asperger's. So I've made an appointment with her.
Also, at this moment I am at a scientific meeting and and I recently met a fellow colleague who actually spent a good deal of time working with people on the spectrum prior to obtaining his PhD. After a group of us post-docs spent the evening chatting and hanging out, he said, "I gotta tell ya, I'm thinking you are on the spectrum." So yeah, as many people have said before if you think you have it. . .you probably have it. I guess it is a matter of what you want to do with that knowledge. . .


I agree completely. I sometimes think I should try and get diagnosed, but then I wonder what the point would be. I'm a functional adult, who has a successful (enough) career and a family. I do see a therapist who has experience with AS and ASDs, so I feel like I'm doing what I should. I don't feel like I need a doctor-assigned label to know I'm an aspie. I know how I am, how I feel, and how I grew up, and it all points to me having AS. There's nothing that any "system" can do from here that would be of any use to me, so why waste my time?


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TalksToCats
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12 Jun 2012, 11:42 am

Just wanted to say thanks for all these really thoughtful replies so far.



mike_br
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12 Jun 2012, 11:47 am

nike: just do it!



Blownmind
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12 Jun 2012, 12:33 pm

I guess there is the issue of health insurance that you cant get if you get a diagnosis..?


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Mummy_of_Peanut
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12 Jun 2012, 1:57 pm

Blownmind wrote:
I guess there is the issue of health insurance that you cant get if you get a diagnosis..?
That's not really an issue in the UK, unless the OP specifically wants private health care.


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12 Jun 2012, 3:50 pm

Do you need help from social services or allowances at school/work? Perhaps people can understand you better if you have a label?

They're the practical reasons.



TalusJumper
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12 Jun 2012, 7:15 pm

I was in exactly the same place you are now a year ago. I am 95% certain that I have AS according to DSM-IV, my past history and many years of studying AS. So after much thought, time and money, I went and got an assessment. After the diagnosis, I was more confused than before- the final report conflicted in several areas and I ended up with a diagnoses of PDD-NOS. I am convinced that to get accurate, comprehensive test results, you either need a superior doctor/ therapist or at least 2-3 assessments.


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TalksToCats
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13 Jun 2012, 4:19 am

Thanks again for all the replies.

Whilst help from social services and health insurance issues may be very important for some people they are not an important issue for me.

I don't need any help with day to day functioning, I can do all of that just fine. I pretty much manage the household finances and between me and my SO our skills / lack of them complement, I can organise stuff, he can fix things, we often shop together to provide moral support. My SO also currently has a good job.

Although I'm currently a full time student, I have managed to hold down jobs continuosly for several years at a time in the past - all be it on occasion I have got very stressed out, and I've found it easier working 4 days rather than 5 /part time so work adaptions might be an issue.

As I said insurance isn't an issue either for me, I'm not seeking private health care, and I have other existing and potential health problems that are far more likely to cause issues for other types of insurances than a diagnosis of autism / aspergers would.

The label or not IS a key thing for me. While I do think it could really assist my self understanding, I could just see if things that help other people on the spectrum manage stresses and strains would also help me...just give some of these techniques ideas a go and see if it helps.

I'm not too bothered about labelling myself to others on a social basis, my current tiny circle of close friends wouldn't care either way. qAquaintances don't need to know as I can act out in a sufficiently social way to get by. As far as work socialising goes as I'm hoping to get a job in academia you're generally allowed to be eccentric, obsessed with special subjects, absent minded and not too keen on socialising, at least to some degree!!

I do worry that a poor attempt at diagnosis will just confuse me. If I want a free diagnosis via the NHS I won't really be able to choose who does it - it is sometimes possible to ask for one organisation over another but difficult. I can't afford to pay for a private assessment just now, plus, my personal experience of having battled through the mental health support system to get help for anxiety and depression is that going private:
a) can take you off the waiting list for NHS help - not good if you later need more urgent help -and
b) finding really good professionals in the private sector is very difficult and can be very expensive; for example most fully qualified clinical psychologists, at least in my area, seem to work in the NHS not privately, and it is really difficult to tell what the qualifications / experience / expertise of private counsellors is.

This means I actually trust the NHS more to give me a good diagnosis than the private sector even it meant I had to wait a while.

There is a regional autism charity, I've briefly been in touch with, who may be able to tell me about what the reputation of the centre I'd be referred to i.e. how good they're meant to be at diagnosing older women (I'm 40 so don't feel old at all :) but understand I would probably categorised as older). I'll think about this more and if on balance I'm considering diagnosis I'll try and find out more about the local centre's reputation for adult diagnosis before I seek referral.

In the meantime if anyone has any further comments please do chip in.



bnky
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13 Jun 2012, 8:18 am

TalksToCats wrote:
This means I actually trust the NHS more to give me a good diagnosis than the private sector even it meant I had to wait a while.

I'm waiting on confirmation of my diagnosis. Although I could have just gone private, the psychiatrist who first diagnosed me told me it would actually take LONGER going private. Apparently there's a lower diagnostician:"patient" ratio in private. Well, in Kent at least.