From a 40+ viewpoint - be officially diagnosed? or not?

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GumbyLives
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03 Apr 2012, 11:01 pm

This question is asked and answered elsewhere, but there are a lot of answers there from younger adults and teens who haven't yet spent decades as an adult living without a diagnosis and facing life with the things older aspergians face.

I'm interested in the views and experiences of midlife and older adults: Is it worth getting an official Aspergers diagnosis if you're later in life (I'm 51)?

A psychiatrist in a work group with me several years back diagnosed me but without an insurance submittal or entry into a medical record. So I have a diagnosis - but not "officially". No doctor, employer, government bureaucrat, etc has to "know" I'm aspergian because there is nothing "offical" recorded saying so. How might my life change if I DID have my diagnosis "official"?

For example, How might medical doctors treat me differently if they knew? Might I get better service from them, or even worse?

How might employers view me differently? Better? Worse?

What about insurance?

How would the world treat me differently if I had an "official" tag?


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jedaustin
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03 Apr 2012, 11:37 pm

I got a formal diagnosis at 43 because of issues with certain people at work and don't regret it.
My insurance covered it.
I forced them to do what they should already be doing via the ADA rules - sad I need an accommodation to get these people to put what they want in writing versus a vague meeting where nothing is resolved.
From medical doctors - no difference in treatment.

The world doesn't treat me differently except for those shallow souls that need the law to force them to be accepting of people that are different.



OddFinn
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04 Apr 2012, 1:11 am

I was diagnosed with AS when I was 42. It did not change much, but at least I don't have to wonder whether I am just imagining I have it.


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Mack27
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04 Apr 2012, 1:42 am

I got diagnosed at 39. It did help me keep my job of 12 years, I was going to lose it because of job changes that I was having trouble dealing with among other things.



NeuroDiversity
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04 Apr 2012, 2:14 am

I was diagnosed fairly recently. There hasn't been any benefit or detriment thus far. Contrary to the comments of a few others, I am somewhat concerned about discrimination as a result of receiving the diagnosis. For example, though I'm not facing this situation, I wonder if a court might use a diagnosis as a way of limiting a parent's custody rights? Or what if some organization were to use the diagnosis as a way of limiting an Aspie's participation in an activity they enjoy? I don't know the answer. Just raising a few questions that could conceivably be relevant to one of us one day.


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questor
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04 Apr 2012, 2:16 am

I am in my early 50s and first learned about Asperger's about 8-10 years ago. I immediately saw myself in the article. I came across other Asperger's articles over the next few years, and each time I saw myself in them. I finally started researching it online, and eventually took one of the online tests. It confirmed what I already believed--that I have Asperger's Syndrome. Some time after that my older sister contacted me, and said she had recently read about a disorder called Aserger's Syndrome, and she believed I probably have it. I told her about my own research and the test results, so this is not just me saying I have it. I am still self diagnosed. I don't see that an official diagnosis will provide any benefits, and may cause problems. There are too many people out there, including many doctors, who don't have a good idea of what Autism/Asperger's Syndrome disorders really are. This can have a negative effect on how they relate to us. So, unless I can get some benefit out of an official diagnosis, I will stay with my self diagnosis.

It's enough that I know why I am different, and why I have problems with some things that don't usually bother most other people. It was a great relief to learn why after decades of living this way without knowing why.

We each need to make our own decision on whether to go for an official diagnosis or not. I think if there is a benefit to having it made official, then it is probably a good idea. But even if you choose not to go official, I do suggest you take the online tests. It will help you see where you stand.


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NeuroDiversity
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04 Apr 2012, 2:30 am

questor wrote:
There are too many people out there, including many doctors, who don't have a good idea of what Autism/Asperger's Syndrome disorders really are. This can have a negative effect on how they relate to us.


Very true. For that reason I don't share my diagnosis outside of family and very close friends I trust. Most of my friends just think I'm an "absent minded professor" or "mad scientist", with the eccentricities that come with the territory. :wink:


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one-A-N
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04 Apr 2012, 2:36 am

I was diagnosed by a psychologist specialising in ASDs when I was in my mid-fifties (2010).

I don't know how official that is as I referred myself as a private client. I paid for it myself, not my private health insurance nor the national health insurance. It was mainly for my own peace of mind that I got the Dx.

I have informally told my boss about it and given him some literature to read, which he was happy to do. I am not convinced that he really understands (or agrees to) the implications though. He has quite a low AQ score himself and wants to make the whole workplace more unstructured, all sharing ideas with everyone else, etc - which is how he works, and the opposite to how I work. Hmmm.... may need to discuss this with my psychologist as it is stressing me out and I cannot stop thinking about it.

I should point out that my boss has been very accommodating in terms of letting me attend psychological appointments. People also tolerate my dislike of fluorescent lighting in my office - I haven't been told I must keep them switched on. I have been taking lots of paid leave (I have heaps to draw on) and that is helping me cope with work stress. I am also beginning to ponder what lies beyond work - e.g. what is my "retirement career"? Do I just retire and sit at home surfing the web (as I am doing right now?) or is there something productive and interesting I could do - perhaps even voluntarily? Hmmm, that is a tough question for an older Aspie. I am so used to being alone in my study when I am not at work that I have no idea what else I could do when I cease work. I have maybe 4 or 5 years left to figure out the answer.

I have only told a few people at work about my Dx - those I have known for many years, who I interact with the most, who I trust - basically friends who have their own psychological conditions. Most fellow staff just don't need to know - if I told them I have AS, it would only be useful provided they had a good understanding of the autism spectrum, and my experience with my boss doesn't lead me to expect that. Most people just cannot imagine how different the world looks and feels to an Aspie (yeah, "wrong planet" syndrome!).

Naturally my wife knows and a number of long-term friends (one admittedly said "I thought you might be"). I am not sure how they are supposed to act differently towards me, and most of them probably don't know either. I guess the label explains why I am uncomfortable in various social situations, including various sensory situations.



jonny23
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04 Apr 2012, 1:14 pm

I wonder about insurance. I'm occasionally self employed and I wonder if I'd be able to get life insurance or if they'd jack up the rates for health insurance if I got a diagnosis.



NeuroDiversity
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04 Apr 2012, 1:18 pm

jonny23 wrote:
I wonder about insurance. I'm occasionally self employed and I wonder if I'd be able to get life insurance or if they'd jack up the rates for health insurance if I got a diagnosis.


That's a good point. I hadn't thought about that.


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05 Apr 2012, 12:42 am

If the percentages being bounced around in the media are anywhere close to accurate, there's close to one percent of the adult population who have autistic traits but aren't aware of it. Each of them lives in a social matrix that's likewise ignorant.

Diagnosis and speaking about it are sort of political for me - I've suffered an invisible discrimination all my life and some of the strongest players in maintaining it are fellow sufferers. Here we are busily raising aware and trained young autistic adults but we can do nothing about the prejudice they'll run into. Not good enough.



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05 Apr 2012, 7:59 am

You have to remember that there can be more than just yourself impacted. If someone lost their life insurance and was a household provider and something happened to them then the family could also loose their house.

I'd be interested to know if anyone has been denied insurance of one kind or another because of a diagnosis. I've found a few people trying to get life insurance for children having problems but nothing about adults. I know the state that I live in has law requiring come coverage but I don't know how that affects premiums. Also the law does not include policies of individuals only group plans at work. So if you're self employed there may be more to think about.

I'm hoping someone with experience in these matters will chime in here. I really don't know what the deal is but it has been a big concern of mine with pursuing a diagnosis.



NeuroDiversity
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05 Apr 2012, 11:51 am

peterd wrote:
If the percentages being bounced around in the media are anywhere close to accurate, there's close to one percent of the adult population who have autistic traits but aren't aware of it. Each of them lives in a social matrix that's likewise ignorant.


Absolutely. I actually think the figures may be understated. But, I think it also depends on where you want to draw the line and say someone has ASD. If you draw the line at the (theoretical) point at which symptoms are clinically significant, then perhaps the current figures are close.

peterd wrote:
Diagnosis and speaking about it are sort of political for me - I've suffered an invisible discrimination all my life and some of the strongest players in maintaining it are fellow sufferers. Here we are busily raising aware and trained young autistic adults but we can do nothing about the prejudice they'll run into. Not good enough.


I agree. We can and should do more.


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06 Apr 2012, 7:45 pm

I'm the same age you are, and was just diagnosed about a year and a half ago. It hasn't changed much for me, but I haven't yet got the ball rolling looking for support, and that is the one thing I've learned, if you need them, is the one reason it can be worth getting other than for one's own self satisfaction.

From what I've heard, mostly here on WP, but also from local professionals, insurance won't usually cover it, but I'm in the U.S. (New England to be precise), not in Germany where you are, so this may not apply to you, because of my age, because there isn't much to be done about it from an insurance companies perspective. In other words, "too late for you" for any support to be worthwhile. I've also been told benefits would be hard, if not impossible to get since I've already been married and raising kids for almost sixteen years. I guess they assume if I've survived this long and haven't had my kids taken away, I must be doing fine. That's what I've been told anyway.

I didn't use insurance to pay for my evaluation. I paid for it myself out of an inheritance.

For me, so far it's just been self gratifying. I was convinced I was on the spectrum, and wanted validation. What it has helped with is with my kids support at public schools. Now that the schools know I've been right about being on the spectrum myself, they take my advice a little more seriously than they used to, because when I say, "I've been there," they know now that I'm NOT just making it up.


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07 Apr 2012, 5:51 am

NeuroDiversity wrote:
If you draw the line at the (theoretical) point at which symptoms are clinically significant, then perhaps the current figures are close.

What exactly is 'clinically significant'?


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08 Apr 2012, 9:10 pm

I was diagnosed in my early forties after thinking I had Lyme Disease. (Ironically, despite a diagnosis by accident, I had attempted diagnosis before. It took having an obviously autistic nephew for this married mother to be considered officially autistic.) I think it was worthwhile, even though I am now unemployed.