Getting a Diagnosis-- advantages? disadvantages?

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Hello!

I'm Lisa, a 21 year old female from Chicago, IL.

I have Asperger Syndrome, but have not been diagnosed.

I need a little help with the issue of getting a diagnosis...

Are there any negative effects or disadvantages with being diagnosed?

I know of a few benefits, but don't want to get the diagnosis if there are any bad effects.

THANKS!! !

Lisa =)

No drawbacks for me, getting diagnosed as an adult in the UK, except that I had to pay for it privately, as I couldn't persuade my general practitioner to refer me.
(And now I've got a "one up" position over him, for a while)

It has given me a better understanding of myself, cut down on alternate diagnoses (and therefore possible unfruitful therapies), and opened routes for support, should I decide to pursue that.

So from personal experience it hasn't done me any harm at all, quite the reverse.

Others may have different tales.

Benefits:
1) Getting a second opinion will take away the nagging thoughts (yours or those of other people) that you're just a hypochondriac.
2) The diagnosis is more informative than "you're an Aspie" or "you're not an Aspie". The doc will look at all the symptoms and may find other things that you haven't noticed. My diagnosis included inattentive ADHD, which is obvious in hind-sight but was a surprise at the time.
3) On a related note, the Dx will rule out other possible causes that could be worrying you. For a while (particularly before I heard of AS) I thought I might have schizophenia. I'm glad to get that thought out of my head.
4) Having an official Dx will give you the confidence to request (or demand) concessions where appropriate, whether it's in education, employment, transportation or dealing with the government. Saying "I think I have AS" won't get you anything.

Risks:
5) If the person was forced into going to the psychologist against his/her will and denies the Dx then it can cause a lot of anxiety and frustration for everyone involved.
6) If you tend to perseverate on your mental health, getting a Dx will mean that instead of thinking "I think I have AS" all day long, you'll be thinking "I have AS" all day long.
7) Some people think that getting a Dx will make you less employable or that the government will take your children away from you. Unless you live in a country where your medical records are made public, your Dx won't be shared with anyone unless you do it yourself in order to gain concessions described above in #4. Besides, if your AS is bad enough that a Dx would affect your employment then any potential employer will probably notice it anyway even if you avoid getting a Dx.

One more point that is neither a risk or a benefit but simply an observation: getting a Dx will change your relationships with other people. Most people won't like/love you any more or any less, but they will probably be curious. You will probably find yourself talking about AS with friends and family instead of the usual gossip or shared interests. It made talking to my parents about my problems a lot easier.

Thanks for the clear, concise info Jetson. I've been considering getting diagnosed, but have put it off because of concerns about potential employment, but now I realize that they won't know unless I tell them. My folks would hit the ceiling, but then they deny my daughter's dx already and tell everyone my wife and I are just bad parents. Hmmm, it could be fun to stir things up a little more.

A diagnosis will benefit people who need it[for support,residential placement if warranted or educational accomodations for example],but a diagnosis can be a hinderance to people whom are doing fine without it/and support because of labeling and expectations.

Diagnosis also helps with understanding and dealing with past.

If you are otherwise able to get by in life, I wonder if a diagnosis (especially if you are on health insurance through your employer) could cause more harm than good. I am concerned about the expense of seeking out such, the possible complications when this gets back to my employer, and whether it would really do me any good anyway. My wife and I have basically decided that there is no need for me to seek an official diagnosis until 'professionals' (Doctors, etc) start trying to tell us our kids have some sort of related 'disorder.'

In other words, do you feel like you need it? Are you in need of special assistance that a diagnosis might bring you? If simply finding out you are very likely in the Asperger's Syndrome camp answers most of the questions in your life, then I doubt an official diagnosis makes much more of a difference. I think making it official has fewer benefits in the US than in other Western nations.

We have many books and are satisfied that I am in there. It answers so many questions about my life. To that end, we don't need an 'official diagnosis' to make personal sense of how I am. It's rough that I went my first 29 or so years not knowing what made me different or just how different I really was.

I am worried about how various people in more or less official positions would regard me if they knew I have a diagnosis. Therefore, I'm not going to tell. I suspect there are more benefits available to Aspies here in Sweden (than in the US), but I'm doing OK and I don't have to go there.

That said, the diagnosis itself was very important to me. It was good knowing, instead of suspecting. It has given me another obsession, though.

getting diagnosised has been all good for me. the biggest was just the knowing for sure that i have it and not having to hesitate in saying i have it.

the other thing for me is that i was already on ssi due to ptsd/depression/panic disorder/etc. having the additional diagnosis of aspergers helps me in that when my case comes up for review i will likely not lose my ssi.

supposedly i can also eventually get a caseworker through the medicaid waiver program (but there's a long waiting list--i have yet to apply).

april

Thank you!

Your replies are very helpful. I know my final decision now, as I DO need the special assistance/accomodations/support that a diagnosis would bring. I'm not doing fine without support, in fact, I need it quite a bit. I have scarce family relationships, little support from them, and no help financially.

Thank God, by the way, for Wrongplanet. The community here is a major source of support for me.

Thanks again for the replies =)
Lisa

Being nearly twice this age (of 21) I can well remember the hardship of having AS before it was an official diagnosis (pre-94). Plus, not having social and family support, while typical of AS, made for some miserable years. With the support of my beloved spouse (in later years) and inevitable age I've begun to adapt but it was an odious task making it to my 30s.

The advantage of having an official diagnosis from a medical practictioner was that it helped explain a lot of things about who I am and why I do and think certain ways. A self-diagnosis is always a chance because the attributes may be something other than AS.

Be reminded that a teacher or MHMR case worker may suggest AS as a potential reason for certain things but AS is a medical condition. Without medical insurance a legitimate diagnosis may be a problem. Without an official diagnosis potential accommodations will not be available.

Best of luck.

That may be true for children who have no track record and are coddled by over-protective parents, but I think we're talking about adult Dx here. If you've been functioning in society without a Dx for 25+ years and then get a Dx, the whole world is not going to suddenly expect you to stop everything you're doing and go home to sit in a corner and rock and flap.... My friends and family didn't stop calling me after I got my Dx. I don't feel like anyone is hindering me. The Dx is just a tool.

Whatever happened to doctor-patient privilege?

It seems like every person on WP from the USA is afraid to get a Dx because their boss will find out, and yet I've never see a single post from anyone saying that this has EVER happened.... Do the clinics and/or insurance companies in the USA routinely call your boss and tell him the results of your medical tests? Does this EVER happen?

The only time a doctor is allowed to breach confidence is if he thinks you are a danger to yourself or others, meaning that you are suicidal or psychotic. Other than that, the only way your boss should ever find out is if you walk into his office and say "I got a Dx of AS and the doc says I shouldn't work around high-speed machinery" or something like that. You obviously aren't going to tell him unless you want your work situation changed.

The Dx is a tool. You can keep it in your (figurative) tool box until *YOU* decide you need to use it.

I live in Canada and could have had my Dx at public expense, but the waiting list for free psychological services is as much as 2 years. Contrary to our "no two-tier health care" rallying cry during elections, there is a lot of private-practise health care available up here. I paid for my own Dx and cut the wait from 2 years down to just a few months. It cost me about $500. I then submitted the bill to my employer's health insurance and they paid for most of it.

The Doctor cannot tell anyone, but for billing purposes things can be disclosed that wouldn't be legal to disclose to anyone else. It is sort of a catch-22. Unless you pay directly, you run the risk of whatever you're going for being revealed. The insurance company is not bound by the same rules/laws as the medical professionals are.

I'd normally not buy into this idea, but I've unfortunately worked with two people that were let go because of conditions that were revealed to the company by the health insurance provider. I have also worked with another person that was seeing a psychiatrist and HR was told by the insurance company. While she was not ran out of the company, she was called into HR to be told that they would work with her to accomodate her...problem is, she never ever told them and had to ask them how THEY found out.

I'll get a diagnosis if we reach a point where it will help us in some way.

WHOAAA $500?!?!?!?!
And what if you're rather poor? Oh wow I guess this is prettty bad.
I don't have an extra Five Hundred Dollars. (!)

That is the essence of the "no two-tier health care" policy that gets debated endlessly here in Canada:
1) People who can afford $500 for a Dx (which is actually quite cheap compared to what a lot of people have paid) don't want to wait 2 years to get a free examination.
2) People who can't afford $500 are upset that they have to wait for services and other people don't, and are worried that if enough people start paying for their own services then the government will cut funding for public services.

The stupid thing is that in some cases people end up losing their jobs because they are unable to get medical treatment within a reasonable time period, and end up on unemployment insurance or welfare. Had they been allowed to pay for their own treatment then they would never have lost their jobs and would still be paying taxes.

FWIW, the doc that did my Dx uses a sliding scale based on family income. The more you earn, the more you pay. Someone who can't afford $500 would probably not have been charged that much in the first place.