What are the benefits to getting a diagnosis?

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zen_mistress
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10 Jun 2009, 10:46 pm

I am talking tangible benefits, and others.

I can see the clear benefit of being able to get disability if I am unable to work, but What are the other benefits?

Will be interesting to read what you guys have to write :) .



jawbrodt
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10 Jun 2009, 11:54 pm

One for me, was "peace of mind". Some family and friends had their doubts as to whether i was lying about having AS or not, so it was nice to have some real proof. That might not sound very important, but to me it was. I hate when people think I'm lying, especially people close to me. :ncool:


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millie
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11 Jun 2009, 1:16 am

as jawbrodt states, "peace of mind," also in my case.
Mysteries solved in terms of a mismatch between potential and outcome in the career field.
Explanation regarding inability to connect emotionally with others.
Answers for my ex-partner and for my son.
Implementation of ASD cbt strategies to help with good quality of life.

Discard of many previous prior dx'es which I KNEW were not applicable or correct.
Discard of traditional emotions based therapies which only stuffed me up more.

Greater self-acceptance.
a much more tangible and clear understanding of my strengths and weaknesses and a forgiveness of myself for those areas I struggle in. (i used to berate myself.)

A fuller sense of identity.
An acceptance that it is ok to be me and that I do not have to try so hard.

A sense of peace.
An understanding of the co-morbids of clinical depression and anxiety - that they are part and parcel of my issues and related to my ASD, and do not have to be viewed as traumatic in origin - as was the line i was spun by various therapists for years.

i could go on.....



BadPuddle
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11 Jun 2009, 2:29 am

Millie-
I agree totally. Everything you mentioned there makes perfect sense and was put far more eloquently than I could do.



cyberscan
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11 Jun 2009, 2:55 am

Many of these things can be had for taking a free, informal test online. Here in Florida, U.S.A., having an official diagnosis of Asperger's, PPD-NOS, or Autistic Disorder mans that you will not be eligible for private health insurance. It may also open you up to other forms of discrimination. The only benefit I see in getting an official diagnosis (at least here in Florida) is the fact that you can use the C.A.R.D. library.


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Dianitapilla
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11 Jun 2009, 3:22 am

millie wrote:
as jawbrodt states, "peace of mind," also in my case.
Mysteries solved in terms of a mismatch between potential and outcome in the career field.
Explanation regarding inability to connect emotionally with others.
Answers for my ex-partner and for my son.
Implementation of ASD cbt strategies to help with good quality of life.

Discard of many previous prior dx'es which I KNEW were not applicable or correct.
Discard of traditional emotions based therapies which only stuffed me up more.

Greater self-acceptance.
a much more tangible and clear understanding of my strengths and weaknesses and a forgiveness of myself for those areas I struggle in. (i used to berate myself.)

A fuller sense of identity.
An acceptance that it is ok to be me and that I do not have to try so hard.

A sense of peace.
An understanding of the co-morbids of clinical depression and anxiety - that they are part and parcel of my issues and related to my ASD, and do not have to be viewed as traumatic in origin - as was the line i was spun by various therapists for years.

i could go on.....


Totally!

I would also add self-recognition. My own being was a mistery to me, so now that I recognise my self better, I can decide what to improve or even if it's a good idea to try, if I'm gonna make it or not.


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zen_mistress
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11 Jun 2009, 4:04 am

millie wrote:
a
Discard of traditional emotions based therapies which only stuffed me up more.

An understanding of the co-morbids of clinical depression and anxiety - that they are part and parcel of my issues and related to my ASD, and do not have to be viewed as traumatic in origin - as was the line i was spun by various therapists for years.

i could go on.....


These 2 points are interesting to me as I have been going through therapy and it is frustrating to have emotional reasons attributed to my sensory and neurological differences,

ie therapist thinking that I dont make eye contact because I am afraid of people, or that I must have social anxiety because I dont like going to shopping malls etc...

jawbrodt wrote:
I hate when people think I'm lying, especially people close to me. :ncool:


That is also an issue with me as I have been told by some people I couldnt possibly have it. An official diagnosis would help this situation.

One thing that is in issue is though that i have suspected I had AS since I read about it in 2003. I have joined groups, met people.. so I dont find diagnosis so important to me on a personal level as I went through the self discovery bit in 03.



Last edited by zen_mistress on 11 Jun 2009, 4:16 am, edited 1 time in total.

zen_mistress
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11 Jun 2009, 4:12 am

cyberscan wrote:
Many of these things can be had for taking a free, informal test online. Here in Florida, U.S.A., having an official diagnosis of Asperger's, PPD-NOS, or Autistic Disorder mans that you will not be eligible for private health insurance. It may also open you up to other forms of discrimination. The only benefit I see in getting an official diagnosis (at least here in Florida) is the fact that you can use the C.A.R.D. library.


That is kind of a concern, though I would love to go to the C.A.R.D library, whatever that is. I dont think it interferes with the insurance in my country. I have health insurance it costs about $45 per month or something.

I have thought about the discrimination thing though.



Danielismyname
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11 Jun 2009, 5:14 am

House says I can say what I want and not get in trouble for it because I have a label. :) The thing is, I've said what I wanted to my whole life, no matter the consequence (way before the label); I didn't and don't care.

I get cheap drugs and psycho/psychic visits with my label (basically free), so score.



zen_mistress
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11 Jun 2009, 5:26 am

Free psycho visits would be an advantage.



general_piffle
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11 Jun 2009, 5:38 am

Simply peace of mind. An online diagnosis wasn't good enough for me because there was always that lingering thought of 'hmm, but what if I'm just a bit of a miserable git who doesn't like socialising that much and was just an awkward kid at school who didn't really have many friends was very bookish and didn't like sports'.

Now a whole heap of things from my past and presnt make a lot more sense as they now have a context and this means I can actually relax a bit. However, I am VERY selective about who I share my diagnosis with as the one thing I do not want it to be is a label - I've done pretty well the past 40 years without knowing I had AS thanks very much :-)



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11 Jun 2009, 5:44 am

One diagnostician in the UK I corresponded with claimed to have recently filled in a Disability Living Allowance form for a client who has AS. The client gets a lot of social anxiety problems and so can't do job interviews or stand to be around people very much. I expect that without the DX, the State would be telling him not to be such a baby and they'd be stopping his Jobseekers Allowance and leaving him to starve. Doesn't mean he can't work, if a suitable job is offered that doesn't invade his privacy.

The other tangible benefit in the UK is the legal requirement for employers to make reasonable adjustments for disabled employees. That means that in principle an employer would have to tailor the job expectations around the Aspie's impairments (to a reasonable extent). The snag is that I hear many employers are reluctant to bother, and of course Aspies aren't reknowned for walking up to the boss and politely demanding things, especially if the boss is wilful and doesn't want to know. So unless you're prepared to really push your claim (which can always be done on paper, as face-to-face agreements don't need to be obtained), the benefits here might amount to nothing. But the law would be on the Aspie's side as long as the Aspie didn't expect too much - the key word is "reasonable," which means that making zero adjustment is not acceptable, but equally the firm doesn't have to totally restructure itself around one person. Having a sympathetic advocate or two (trade union convenor or solicitor for example) could help to oil the wheels of any attempt to make the job bearable.

There's also said to be resources available from the NAS to anybody with a DX - though I don;t know what they offer exactly. And maybe the NHS would be willing to give a bit of cognitive therapy, though no doubt it wouldn't be much.

I also think that just "knowing" you have AS (if indeed you see a DX as likely to clinch your suspicions of your suspected condition) could be of value - self-diagnosis in the world of psychology and neurology is a dangerous thing, because the individual with whatever "mental disorder" is highly likely to allow ego and self-validation issues to get in the way of objectivity. That's not to say that the diagnostician is always right and the client always wrong - but where both client and diagnostician come to agree, that's a more rigorous result than a simple self-DX. It can be very confusing to have nothing but a high score on the AQ test, and to have to go through life's problems thinking "if I'm an Aspie, then that could explain this problem, but if I'm not, then maybe it's X or Y that's causing it" - i.e. self-analysis can get so complicated and inconclusive that corrective strategies may never be found.

Certainly since first suspecting AS in myself, and learning about how the impairments operate in real-life situations, I've been able to calm down a little and make "repairs" by using my Aspie eyeglasses when looking at my problems......e.g. my pathological honesty isn't such a problem now, because I've begun to see that NTs really don't expect total candour. Similarly, if I'm 5 minutes late for work, I don't have to worry that I'll be sacked for it. I can leave bits of forms blank without worrying that the world will collapse as a result. I can screen my thinking for excessive "black-and whiteness" and adjust it to a more realistic appraisal of reality. I suspect that clinching my self-diagnosis with an external DX could allow me to pursue this kind of "self-therapy" with more confidence, as well as enhancing it with external CBT, assuming I can find a suitable teacher.



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11 Jun 2009, 7:49 am

1. Personal edification (that my self-diagnosis was correct...but this is not the best reason in my mind to get one).

2. Access to government assistance (only worth while if I can not work/can't get hired...not an issue so far).

3. Protection in the workplace (only worth while if I have a great job and intolerance/harassment from others is jeopardizing my employment security...not applicable at this time).



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11 Jun 2009, 8:35 am

zen_mistress wrote:
Free psycho visits would be an advantage.

That might depend on the personality of the psycho who was visiting.......some "health visitors" are a pain in the butt, in my experience. Anybody seeing themselves as any kind of authority figure would NOT be welcome in my "castle." On the other hand, well-thought-out advice given respectfully in an "it's entirely your decision whether you agree to this or not" kind of way might be good.



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11 Jun 2009, 10:16 am

ToughDiamond,
DLA is allowed to be got without official diagnosis of anything as long as the support needs are there,as the benefit is based on care and mobility needs,rather than a label itself.
some DLA staff are useless and not trained enough or biased [it took staff two years to get am high rate mobility under the sev/behavior and sev/mental impairment criterias because DLA staff kept saying high rate mobility only existed for people who were wheel chair dependant/had physical disabilities,completely denieing the non physical criteria] for those who are refused it based on lacking a label,they are experiencing the very common ignorance found amongst the DLA staff.
Best thing to do if they dont sort it out and keep refusing the application,is to go to tribunal-those guys are neutral and know how to judge a persons need of DLA fairly and non discriminatively,very rarely does someone not get the right result after one.


As for benefits of getting a diagnosis,it would depend on what level of autism,functioning and support needs have got,and it also depends on each borough or state of a country because they all offer different things.
If are low functioning enough to qualify for social services [or equivilent in own area] or learning disability services,it opens up a lot of services available to the autie or aspie,including specialist autism services and general LD/DD.
It also opens up education chances as an adult,whether in special or mainstream.

For some of us,[though,am not sure if any other countries offer an equivilent] the combo of label and needs gets us a car through motability,and blue badge.
It gets some a travel pass of some sort [free travel on public transport],it gets some a 'carers pass' as well,depending on area and country.

For those who like going to cinema/films,it gives access to a pass which allows someone with the person to get in free [think thats right,some sort of discount anyway].

For those who like holidays,it gets them access to certain holiday villages/centres which are only accessible to people with disabilities [bendrigg and chrysalis are two UK based ones].

And for those in the UK,a diagnosis gets them access to the NAS [in areas that have an NAS HQ] ,whom offer many services for people anywhere on the spectrum,there's also various other autism specialists in the UK but are more limited than NAS.

Even if got a big group from all over the same country,each area wouldn't be good for judging anothers services on because they can be very different,depends on local funding.


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ToughDiamond
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11 Jun 2009, 3:23 pm

KingdomOfRats wrote:
ToughDiamond,
DLA is allowed to be got without official diagnosis of anything as long as the support needs are there,as the benefit is based on care and mobility needs,rather than a label itself.

That's very interesting - the diagnostician I was talking about is not a psychologist and uses the ADOS test. I asked whether their DX would be as legally valid (from the point of view of getting employers to make reasonable adjustments to working conditions). The DLA form-filling was their reply. And according to the standard email I got some time ago from the NAS, only a psychologist or psychiatrist can give a DX for Aspergers Syndrome. Yet ADOS is supposed to be the "gold standard" diagnosis, and anybody can administer the test as long as they've passed the training......I'll have to ask the NAS whether they really mean that only a psychologist can diagnose AS. Perhaps the qualifications of the diagnostician - and the method - make some difference to the benefits of the DX?