What are the ramifications of an Asperger's diagnosis?
June 18, 2013 11:11 AM Subscribe
So, a few professionals have informed me that they’re pretty sure I have Asperger's. Everyone agrees (including me) that I’m high-functioning. But apparently everyone also agrees that a positive diagnosis is very likely. Should I get the official diagnosis?
Of course this has plenty of personal consequences that I’m starting to work through. But I also have to figure out whether to get an official diagnosis. What are the implications of getting an official diagnosis? What happens when insurance companies learn something like that? (I’m in the U.S.) Does anyone have experience of other’s attitudes towards you noticeably changing after learning about something like this? Any other unexpected ramifications?
I trust the professionals who have unofficially diagnosed me, so I’m not looking to the official diagnosis as confirmation. I think I can integrate this information without the official diagnosis. So the decision to get an official diagnosis is largely based on the practical implications.
Any insight would be appreciated.
Throw-away email: aspieundertheradar@gmail.com
Thanks!
Of course this has plenty of personal consequences that I’m starting to work through. But I also have to figure out whether to get an official diagnosis. What are the implications of getting an official diagnosis? What happens when insurance companies learn something like that? (I’m in the U.S.) Does anyone have experience of other’s attitudes towards you noticeably changing after learning about something like this? Any other unexpected ramifications?
I trust the professionals who have unofficially diagnosed me, so I’m not looking to the official diagnosis as confirmation. I think I can integrate this information without the official diagnosis. So the decision to get an official diagnosis is largely based on the practical implications.
Any insight would be appreciated.
Throw-away email: aspieundertheradar@gmail.com
Thanks!
It depends where you are in the US, but in a lot of states, an official diagnosis means that insurance needs to cover any treatment pertaining to the diagnosis, regardless of age.
So one "consequence" is that you would be eligible for behavioral support programs like social skills groups and ABA therapy -- should you want it or think you could benefit from it.
But put this way, it's not going to change who you are to have the diagnosis. And you don't have to disclose it to anyone you don't want to, especially as an adult.
So the question you should be asking --- were you seeking this out to understand more about yourself because something about you is upsetting/distressing/or doesn't make any sense to you? And do you want that upsetting/distressing/nonsensical thing to change? Or are you good?
If the former, get the diagnosis because it opens up treatment options. If the latter, then you're good.
posted by zizzle at 11:33 AM on June 18, 2013
So one "consequence" is that you would be eligible for behavioral support programs like social skills groups and ABA therapy -- should you want it or think you could benefit from it.
But put this way, it's not going to change who you are to have the diagnosis. And you don't have to disclose it to anyone you don't want to, especially as an adult.
So the question you should be asking --- were you seeking this out to understand more about yourself because something about you is upsetting/distressing/or doesn't make any sense to you? And do you want that upsetting/distressing/nonsensical thing to change? Or are you good?
If the former, get the diagnosis because it opens up treatment options. If the latter, then you're good.
posted by zizzle at 11:33 AM on June 18, 2013
I'd do it because for YOU there would be benefits you could take advantage of.
The cynic in me says that you may find that you become MORE employable because you identify as 'handicapped' and can tick the box on employment forms for diversity.
I wouldn't advertise though.
posted by Ruthless Bunny at 12:01 PM on June 18, 2013
The cynic in me says that you may find that you become MORE employable because you identify as 'handicapped' and can tick the box on employment forms for diversity.
I wouldn't advertise though.
posted by Ruthless Bunny at 12:01 PM on June 18, 2013
What do you want from the diagnosis, and how would you act differently if you had one?
Attitudes can and will change. Some people will think 'oh, so that's why he does that..' and might make more allowances for your quirks. Others will - particularly with mental disabilities - react poorly. I wouldn't advertise it.
That said, attitudes towards an unofficial diagnosis tend to be rather poor - because it can be rather frustrating to hear other people say things like 'oh I'm depressed today' or 'oh, just being a bit retarded today', who do not truly have the same problems, and have no idea what it's like. Particularly with mental health, there's also an attitude towards 'oh, everyone is like that sometimes, so it's not a real disability', making people somewhat defensive. If you do choose to tell people, I would strongly suggest getting an official diagnosis.
One main reason to get a diagnosis is if you want to access disability services/official resources in some way. This is far more useful in say, college where they are legally obligated to help you. This can be less useful in the workplace where discrimination does exist, whether it's legal or not. Note that as far as I am aware, you do not have to disclose a diagnosis of this type to anyone, including employers and insurance.
Another reason to get an official diagnosis is if you're seeking any kind of medical treatment, including insurance funded support programs and/or medication should that apply to you.
For some people, getting an official diagnosis makes them feel better about themselves, particularly if they've struggled with something in the past. Your question doesn't imply this, but it's worth thinking about.
posted by Ashlyth at 12:21 PM on June 18, 2013
Attitudes can and will change. Some people will think 'oh, so that's why he does that..' and might make more allowances for your quirks. Others will - particularly with mental disabilities - react poorly. I wouldn't advertise it.
That said, attitudes towards an unofficial diagnosis tend to be rather poor - because it can be rather frustrating to hear other people say things like 'oh I'm depressed today' or 'oh, just being a bit retarded today', who do not truly have the same problems, and have no idea what it's like. Particularly with mental health, there's also an attitude towards 'oh, everyone is like that sometimes, so it's not a real disability', making people somewhat defensive. If you do choose to tell people, I would strongly suggest getting an official diagnosis.
One main reason to get a diagnosis is if you want to access disability services/official resources in some way. This is far more useful in say, college where they are legally obligated to help you. This can be less useful in the workplace where discrimination does exist, whether it's legal or not. Note that as far as I am aware, you do not have to disclose a diagnosis of this type to anyone, including employers and insurance.
Another reason to get an official diagnosis is if you're seeking any kind of medical treatment, including insurance funded support programs and/or medication should that apply to you.
For some people, getting an official diagnosis makes them feel better about themselves, particularly if they've struggled with something in the past. Your question doesn't imply this, but it's worth thinking about.
posted by Ashlyth at 12:21 PM on June 18, 2013
Why does anyone get diagnosed with anything? I have a sleep disorder. I sought a diagnosis because I wanted to receive treatment for my sleep disorder. I'm being treated and it's awesome - hooray! What is the treatment for Asperger's? I don't know. It looks like some symptoms can be alleviated with anti-depressants but you can take anti-depressants for almost any reason.
Diagnosis is also helpful because it confirms or reaffirms something about ourselves. Before I was diagnosed with a sleep disorder, I thought I was a lazy bad person. After I was diagnosed, I felt like a weight had been lifted from my shoulders - I'm not a lazy bad person! It's not my fault that I'm exhausted all the time!
But. I've learned that the various problems I have, including my sleep disorder, are my responsibility even if they are not my fault. Getting prescribed the medicine I take for my sleep disorder was an ordeal. I still occasionally have to brawl with my insurance company to get the things I need to function. It isn't my fault that I have to deal with the insurance company but it is my responsibility. What might that responsibility mean to you? Are you prepared to deal with it?
Also, you seem concerned about telling people. You don't have to tell people. You don't (AFAIK) have to wear an armband or anything. But you may want to tell people with whom you are close. It's not something to be ashamed of but it's not necessarily something that you want to broadcast, for the same reasons that I don't announce when it's my period (hope that's not a gross comparison).
I've told a few people about my sleep disorder, mostly because I was happy about it and relieved. But there isn't much of a stigma (that I know of?) with sleep disorders. There may be with Asperger's. That might work to your benefit ("but you seem so normal!") or not ("that explains so much!").
Just a few thoughts. YMMV.
posted by kat518 at 12:24 PM on June 18, 2013
Diagnosis is also helpful because it confirms or reaffirms something about ourselves. Before I was diagnosed with a sleep disorder, I thought I was a lazy bad person. After I was diagnosed, I felt like a weight had been lifted from my shoulders - I'm not a lazy bad person! It's not my fault that I'm exhausted all the time!
But. I've learned that the various problems I have, including my sleep disorder, are my responsibility even if they are not my fault. Getting prescribed the medicine I take for my sleep disorder was an ordeal. I still occasionally have to brawl with my insurance company to get the things I need to function. It isn't my fault that I have to deal with the insurance company but it is my responsibility. What might that responsibility mean to you? Are you prepared to deal with it?
Also, you seem concerned about telling people. You don't have to tell people. You don't (AFAIK) have to wear an armband or anything. But you may want to tell people with whom you are close. It's not something to be ashamed of but it's not necessarily something that you want to broadcast, for the same reasons that I don't announce when it's my period (hope that's not a gross comparison).
I've told a few people about my sleep disorder, mostly because I was happy about it and relieved. But there isn't much of a stigma (that I know of?) with sleep disorders. There may be with Asperger's. That might work to your benefit ("but you seem so normal!") or not ("that explains so much!").
Just a few thoughts. YMMV.
posted by kat518 at 12:24 PM on June 18, 2013
Sometimes, and I think oftentimes, information is worth knowing simply for its own sake. Like absquatulate said, an diagnosis of having Asperger's, or something else, or of neurotypicality, can help with self-knowledge. Please bear in mind that an "informal" diagnosis such you describe is not a diagnosis. It is possible that a formal diagnosis comes back as neurotypical.
As to how and if you should share it, see below. I am a rather private person so I do not think it is something I would tell someone you just met at a party.
The cynic in me says that you may find that you become MORE employable because you identify as 'handicapped' and can tick the box on employment forms for diversity.
From an employment law standpoint, the handicapped have seen their employment chances decrease because a disabled job applicant is often seen as a future ADA plaintiff. I would recommend that OP not disclose any non-neurotypicality to an employer. More generally, I think this sort of thing is "need to know" information that would only be shared with close relatives and friends.
posted by Tanizaki at 12:25 PM on June 18, 2013 [1 favorite]
As to how and if you should share it, see below. I am a rather private person so I do not think it is something I would tell someone you just met at a party.
The cynic in me says that you may find that you become MORE employable because you identify as 'handicapped' and can tick the box on employment forms for diversity.
From an employment law standpoint, the handicapped have seen their employment chances decrease because a disabled job applicant is often seen as a future ADA plaintiff. I would recommend that OP not disclose any non-neurotypicality to an employer. More generally, I think this sort of thing is "need to know" information that would only be shared with close relatives and friends.
posted by Tanizaki at 12:25 PM on June 18, 2013 [1 favorite]
I'm wary of armchair diagnosticians. That said, I have a close friend who has described himself as probably having Asperger's, and it makes sense. He has assessed his way of relating to people, and worked on strategies for improving his skills very successfully. So, read up and find out what aspects are affecting your like, and learn coping skills.
If you find that it's affecting you at work or school, a diagnosis will get you accommodation for it as a disability. Also, someone who is a trained to diagnose Asperger's can help you identify any areas where you would benefit from learning skills.
posted by theora55 at 12:40 PM on June 18, 2013
If you find that it's affecting you at work or school, a diagnosis will get you accommodation for it as a disability. Also, someone who is a trained to diagnose Asperger's can help you identify any areas where you would benefit from learning skills.
posted by theora55 at 12:40 PM on June 18, 2013
Do you have a specific goal in mind? For example, do you need it to get referal to services? If not, you might want to hold off. If you can self accommodate, life may be easier without a stigmatizing label.
My ex likely qualifies for a diagnosis of Asperger's (which I think is being removed from the DSMV). He did well in the military, where they tell you exactly what to wear and everyone wears a name tag, etc. He made it to a fairly high rank and apparently now,has a civilian job doing something similar. Being married to me helped him with some of the social stuff. He probably would not benefit from a diagnosis and mught find his career harmed. He is very intelligent and does well with arranging his life so it works for him.
I casually mentioned to someone yesterday that my kids are ASD and then wished I hadn't. They were promptly all up in business with suggestions on how to handle it. I know what I am doing, "thank you for your concern and all", but really it wasn't helpful. I get a lot of dumb assumptions from folks who hear the label. So unless you need the formal diagnosis for a specific purpose, labels like "shy," "introverted," or "socially awkward" might be more useful to you.
posted by Michele in California at 1:41 PM on June 18, 2013
My ex likely qualifies for a diagnosis of Asperger's (which I think is being removed from the DSMV). He did well in the military, where they tell you exactly what to wear and everyone wears a name tag, etc. He made it to a fairly high rank and apparently now,has a civilian job doing something similar. Being married to me helped him with some of the social stuff. He probably would not benefit from a diagnosis and mught find his career harmed. He is very intelligent and does well with arranging his life so it works for him.
I casually mentioned to someone yesterday that my kids are ASD and then wished I hadn't. They were promptly all up in business with suggestions on how to handle it. I know what I am doing, "thank you for your concern and all", but really it wasn't helpful. I get a lot of dumb assumptions from folks who hear the label. So unless you need the formal diagnosis for a specific purpose, labels like "shy," "introverted," or "socially awkward" might be more useful to you.
posted by Michele in California at 1:41 PM on June 18, 2013
One possible point of interest-- as of the release of the DSM-5, Asperger's is no longer a diagnosis. If indeed you were to fall within the diagnostic criteria, you would be diagnosed with autism spectrum disorder. There's a new set of indicators (including intellectual disability, language ability, and regression) along with severity markers (a scale of 1-3).
There's some more information in this Slate article.
posted by charmcityblues at 1:47 PM on June 18, 2013 [1 favorite]
There's some more information in this Slate article.
posted by charmcityblues at 1:47 PM on June 18, 2013 [1 favorite]
Everyone has tinges of most mental illnesses, and those tinges aggravate under stress. The one you're most susceptible to is the one you get identified with. It's like a weakness or fault line underpinning your existence. Unless it's severe, it needn't define you. In other words, there's a spectrum. And Aperger's is a spectrum-within-a-spectrum. And it sounds like you're not very profoundly affected.
Asperger's happens to be trendy, which makes it more catchy and interesting than it would ordinarily be. And reading up on it may prove illuminating - i.e. draw together some previously unconnected issues for you, and show you life and social aspects that may require extra attention for you. Fine.
But I'd suggest you avoid getting too involved in this, or in self-defining. It's not like learning you're diabetic or myopic. It's not even like learning you're bipolar or schizophrenic. IMO (and it's an educated opinion, though I'm not a professional in the field), this is more akin to learning you're mildly allergic to grapefruit or that your knee goes out when you run too much. It's really more of a "type" issue than a "disease" issue.
So the sort of thing you can learn upon finding out you may (or may not) fit this type is all good insightful stuff, but in the end, it's not something you need to hammer home and act upon. Take the insight of this categorization for what it's worth. Whether someone says you "are" this thing or not is really quite irrelevant.
I hope that's clear. I could write 75 pages on this, and offer much more basis for what i'm saying, but I'm hoping the gist conveys ok (if not, I'll be glad to follow up).
posted by Quisp Lover at 2:31 PM on June 18, 2013 [2 favorites]
Asperger's happens to be trendy, which makes it more catchy and interesting than it would ordinarily be. And reading up on it may prove illuminating - i.e. draw together some previously unconnected issues for you, and show you life and social aspects that may require extra attention for you. Fine.
But I'd suggest you avoid getting too involved in this, or in self-defining. It's not like learning you're diabetic or myopic. It's not even like learning you're bipolar or schizophrenic. IMO (and it's an educated opinion, though I'm not a professional in the field), this is more akin to learning you're mildly allergic to grapefruit or that your knee goes out when you run too much. It's really more of a "type" issue than a "disease" issue.
So the sort of thing you can learn upon finding out you may (or may not) fit this type is all good insightful stuff, but in the end, it's not something you need to hammer home and act upon. Take the insight of this categorization for what it's worth. Whether someone says you "are" this thing or not is really quite irrelevant.
I hope that's clear. I could write 75 pages on this, and offer much more basis for what i'm saying, but I'm hoping the gist conveys ok (if not, I'll be glad to follow up).
posted by Quisp Lover at 2:31 PM on June 18, 2013 [2 favorites]
Also, this test may be interesting. Not necessarily for diagnostic purposes, but because some of the symptoms revealed by the questions may ring true and tie together issues for you.
For instance, the symptom of difficulty with shirt sleeve buttons really struck home for me. I'd never really thought about it, but, yeah, that's something that's never quite come easily to me. So now I either take more time with that, or get help (girlfriends, I find, LIKE to help out with buttons, and I find it charmingly intimate/sexy), so it's not like this perpetual "goddamit!" event in my daily life. I.e. I learn to gently compensate. That's useful - more so than any attempt to self-label or self-define from this diagnosis (formal or not) - which lots of people do, and which I find foolish and self-defeating.
posted by Quisp Lover at 2:42 PM on June 18, 2013
For instance, the symptom of difficulty with shirt sleeve buttons really struck home for me. I'd never really thought about it, but, yeah, that's something that's never quite come easily to me. So now I either take more time with that, or get help (girlfriends, I find, LIKE to help out with buttons, and I find it charmingly intimate/sexy), so it's not like this perpetual "goddamit!" event in my daily life. I.e. I learn to gently compensate. That's useful - more so than any attempt to self-label or self-define from this diagnosis (formal or not) - which lots of people do, and which I find foolish and self-defeating.
posted by Quisp Lover at 2:42 PM on June 18, 2013
My assumption is that your 'unofficial diagnosis' was that you saw a qualified professional for some other reason and they said 'I think you probably have Asperger's, but it's not my area of expertise, so go see an expert for a real diagnosis.' Which seems not to be the scenario other people are imaging.
I did have the above situation occur (someone qualified on paper to make a diagnosis preferring that someone who specialises in ASDs do it). I ended up not pursuing it out of a combination of laziness, because it would have required making phone calls and because the office of the person it was suggested I see was a long bus ride away (and I had no idea how to go about finding someone else closer). That was maybe two years ago and I've thought about whether I should have pursued it or should pursue it now one the grounds that having a 'yes' or 'no' rather than a 'I think so, but you should ask someone else' would somehow enhance my life. But the 'opportunity to learn more about myself' that a firm diagnosis might be isn't really speaking to me at the moment.
IIRC there was also some concern that obtaining a diagnosis would involve testing insurance might be reluctant to cover, but I didn't pursue it far enough to figure out what costs would be involved. Insurance companies are much less willing to cover autism-related services for adults than for children, as far as I know, so that may not be a advantage to obtaining a diagnosis. (On the plus side, if you're confident you can hang on to insurance until January, at least it couldn't be held against you as a pre-existing condition.)
posted by hoyland at 3:34 PM on June 18, 2013
I did have the above situation occur (someone qualified on paper to make a diagnosis preferring that someone who specialises in ASDs do it). I ended up not pursuing it out of a combination of laziness, because it would have required making phone calls and because the office of the person it was suggested I see was a long bus ride away (and I had no idea how to go about finding someone else closer). That was maybe two years ago and I've thought about whether I should have pursued it or should pursue it now one the grounds that having a 'yes' or 'no' rather than a 'I think so, but you should ask someone else' would somehow enhance my life. But the 'opportunity to learn more about myself' that a firm diagnosis might be isn't really speaking to me at the moment.
IIRC there was also some concern that obtaining a diagnosis would involve testing insurance might be reluctant to cover, but I didn't pursue it far enough to figure out what costs would be involved. Insurance companies are much less willing to cover autism-related services for adults than for children, as far as I know, so that may not be a advantage to obtaining a diagnosis. (On the plus side, if you're confident you can hang on to insurance until January, at least it couldn't be held against you as a pre-existing condition.)
posted by hoyland at 3:34 PM on June 18, 2013
I'm going to advise heavily against.
A few years back a friend's children were all being assessed for ASD.
She stated doing some heavy research including for herself. After reading a few ASD and Aspergers bio's and some more informative-type books, she decided it would be interesting to have an adult assessment done on herself.
Two places in our city did diagnosis, one being a psychiatrist that specialized in it, and the other being a university. She contacted both places, and as part of the intake questionnaire they both asked, "Why are you seeking a diagnosis and what do you hope it will accomplish for you?"
After a brief discussion about that, they both concluded that unless she was hoping to seek out specialized treatment (which simply wasn't available given her age, the fact that she had competed school, reached adulthood, married and procreated without major struggle --all which conclude high-functioning), that any diagnosis would actually be a poor label to have stuck to her for the rest of her life.
They both cited reasons such as stereotypes, society's attitude towards ASD and disabilities and the potential for that to change in either direction, and even such things as how it could negatively affect her should she need schooling, long-term care, or potential future legislation that cannot be predicted.
They also asked her to consider future judgement against deeming herself 'fit' as a parent in court in the event of a divorce, or even the ethics of having more children in the future when she is labeled with something that has genetic ties.
In addition, the testing cost $2200 and would take several days of intense study and require multiple references and interviews from family members to confirm a long-standing pattern of ASD-like behaviors. In other words, it would also be a huge pain in the ass for herself and everyone around her, and could very possibly limit her life in various ways should she go through with it.
So ask yourself, does the benefit of having this diagnosis for yourself outweigh the potential risks?
Also: You might not actually have it. I personally know of 3 examples where the person in question was assumed to have Aspergers by all health professionals and close friends and after diagnosis was in fact OCD/GAD.
posted by tenaciousmoon at 3:38 PM on June 18, 2013 [5 favorites]
A few years back a friend's children were all being assessed for ASD.
She stated doing some heavy research including for herself. After reading a few ASD and Aspergers bio's and some more informative-type books, she decided it would be interesting to have an adult assessment done on herself.
Two places in our city did diagnosis, one being a psychiatrist that specialized in it, and the other being a university. She contacted both places, and as part of the intake questionnaire they both asked, "Why are you seeking a diagnosis and what do you hope it will accomplish for you?"
After a brief discussion about that, they both concluded that unless she was hoping to seek out specialized treatment (which simply wasn't available given her age, the fact that she had competed school, reached adulthood, married and procreated without major struggle --all which conclude high-functioning), that any diagnosis would actually be a poor label to have stuck to her for the rest of her life.
They both cited reasons such as stereotypes, society's attitude towards ASD and disabilities and the potential for that to change in either direction, and even such things as how it could negatively affect her should she need schooling, long-term care, or potential future legislation that cannot be predicted.
They also asked her to consider future judgement against deeming herself 'fit' as a parent in court in the event of a divorce, or even the ethics of having more children in the future when she is labeled with something that has genetic ties.
In addition, the testing cost $2200 and would take several days of intense study and require multiple references and interviews from family members to confirm a long-standing pattern of ASD-like behaviors. In other words, it would also be a huge pain in the ass for herself and everyone around her, and could very possibly limit her life in various ways should she go through with it.
So ask yourself, does the benefit of having this diagnosis for yourself outweigh the potential risks?
Also: You might not actually have it. I personally know of 3 examples where the person in question was assumed to have Aspergers by all health professionals and close friends and after diagnosis was in fact OCD/GAD.
posted by tenaciousmoon at 3:38 PM on June 18, 2013 [5 favorites]
I would be worried about getting anything officially diagnosed and on your medical records for life right now, because if you lose your insurance it'll make it probably nigh-impossible to get insurance on your own this year. Hell, if you had a cold they can and will reject you for private insurance--having something major on your record will probably doom you there. If you wait until 2014 and the new insurance laws kick in, it might be better. I don't know how safe and secure your insurance is, but I would be worried about that--and if at all possible, I'd avoid going official until 2014.
And as tenaciousmoon points out, what is it going to do for you to be officially diagnosed? Is there any advantage to it? I suspect I have ADD/ADHD, but I am definitely high functioning and I wouldn't take drugs for it at all and I just plain don't want the black mark on my medical records if I don't absolutely have to have it. So I'd think of it in those terms. If it's not interfering with how you live life, does it matter, really?
posted by jenfullmoon at 5:47 PM on June 18, 2013
And as tenaciousmoon points out, what is it going to do for you to be officially diagnosed? Is there any advantage to it? I suspect I have ADD/ADHD, but I am definitely high functioning and I wouldn't take drugs for it at all and I just plain don't want the black mark on my medical records if I don't absolutely have to have it. So I'd think of it in those terms. If it's not interfering with how you live life, does it matter, really?
posted by jenfullmoon at 5:47 PM on June 18, 2013
I am fairly certain insurance pre existing condition rules are only for the specific condition. And if you DO have a condition, AND need to change insurance, AND get denied for that specific condition, THEN you can decide whether to delay or defer treatment.
If you are having trouble relating to ASD types of behaviors or thoughts, then of course you should get evaluated.
If you feel like you are fine and the rest of the world is nuts, you should get evaluated.
If you feel like you are fine and have healthy relationships and don't have a history of friends disappearing for seemingly no reason, there is no need to be evaluated.
If you want to, go ahead and get tested. Life isn't a rehearsal, and there is no final grade at the end. If you think you could improve your life by knowing, then you should. It's only a label if you tell people about it or you feel ashamed by it. But I'd rather be labeled as someone with a problem that he is working on, then be known as a chump going through life unaware of his problems.
posted by gjc at 8:24 PM on June 18, 2013
If you are having trouble relating to ASD types of behaviors or thoughts, then of course you should get evaluated.
If you feel like you are fine and the rest of the world is nuts, you should get evaluated.
If you feel like you are fine and have healthy relationships and don't have a history of friends disappearing for seemingly no reason, there is no need to be evaluated.
If you want to, go ahead and get tested. Life isn't a rehearsal, and there is no final grade at the end. If you think you could improve your life by knowing, then you should. It's only a label if you tell people about it or you feel ashamed by it. But I'd rather be labeled as someone with a problem that he is working on, then be known as a chump going through life unaware of his problems.
posted by gjc at 8:24 PM on June 18, 2013
I knew a psychiatrist many years ago that told me that diagnosis to him was a matter of what services became available to a patient versus what limitations got placed on a the patient.
I sometimes wonder about how much data about my health gets to corporations that say they are only interested in aggregate but which can create individual consequences for me.
MIB group is an example of what causes me concern at times.
So I guess my best stab at this is, does the diagnosis open up any tangible benefits? If so I'd likely go for getting the diagnosis. If there aren't tangible benefits I'd weigh things against the possible implications of being labelled in databases which might or might not have implications about insurance, maybe even employability in certain areas.
ADA protection from getting a diagnosis might turn out to be a lot less benefit than one would think. If it gets litigated you will have to prove an employer knew you needed special accommodation and that such accommodation is reasonable. Also you could try to prove that hiring or other decisions were specifically related in some way to one's disability. All of that might be more complication than you need, especially if you are already valued and perceived as competent.
Do you need any accommodations you aren't already receiving?
posted by logonym at 10:53 PM on June 18, 2013
I sometimes wonder about how much data about my health gets to corporations that say they are only interested in aggregate but which can create individual consequences for me.
MIB group is an example of what causes me concern at times.
So I guess my best stab at this is, does the diagnosis open up any tangible benefits? If so I'd likely go for getting the diagnosis. If there aren't tangible benefits I'd weigh things against the possible implications of being labelled in databases which might or might not have implications about insurance, maybe even employability in certain areas.
ADA protection from getting a diagnosis might turn out to be a lot less benefit than one would think. If it gets litigated you will have to prove an employer knew you needed special accommodation and that such accommodation is reasonable. Also you could try to prove that hiring or other decisions were specifically related in some way to one's disability. All of that might be more complication than you need, especially if you are already valued and perceived as competent.
Do you need any accommodations you aren't already receiving?
posted by logonym at 10:53 PM on June 18, 2013
Experienced evaluators of Aspergers in adults are hard to come by -- and given that, as an official diagnosis, it only existed for about 19 years, and was focused almost exclusively on children, that's not surprising.
As of the release of DSM V, there is no such thing as Asperger's, as some above have noted. If diagnosed, it would be as an autism spectrum disorder (and I'd like to note, please, that it is not a mental illness, but a cognitive dysfunction).
The purpose of having an official diagnosis, truly, is to use it to seek help and resources under a country's disabilities acts and services. If, like me, you came to discover your place on the spectrum as an adult, after many years of having found ways of living around and beyond your differences, and are not significantly affected, then a diagnosis tends to have less practical value.
Self-diagnosis can set people's teeth on edge, but it's important to remember that there's absolutely no litmus test for any cognitive diagnosis: any clinician will merely do the best they can based on their experience, their time with you, and official guides.
I'd recommend reading Tony Atwood's book on Asperger's Syndrome, to start.
posted by gsh at 6:52 AM on June 19, 2013
As of the release of DSM V, there is no such thing as Asperger's, as some above have noted. If diagnosed, it would be as an autism spectrum disorder (and I'd like to note, please, that it is not a mental illness, but a cognitive dysfunction).
The purpose of having an official diagnosis, truly, is to use it to seek help and resources under a country's disabilities acts and services. If, like me, you came to discover your place on the spectrum as an adult, after many years of having found ways of living around and beyond your differences, and are not significantly affected, then a diagnosis tends to have less practical value.
Self-diagnosis can set people's teeth on edge, but it's important to remember that there's absolutely no litmus test for any cognitive diagnosis: any clinician will merely do the best they can based on their experience, their time with you, and official guides.
I'd recommend reading Tony Atwood's book on Asperger's Syndrome, to start.
posted by gsh at 6:52 AM on June 19, 2013
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I am kind of curious of these professionals who have unofficially diagnosed you... I presume they are friends? Colleagues? I wouldn't forge ahead on any sort of remediation based on that. I'm certain they mean well, and they presumably have the authority to make such a diagnosis, but that's shaky ground for starting to better understand your social communication abilities.
A good reason for getting an official diagnosis and full work-up is that you can learn more about your strengths and weaknesses; something that an 'informal' assessment by a friend will not tell you. For example, there are different profiles of social communication abilities that might inform you about what you're good at and what things you need help with. But you would only get that from a full evaluation from a psychologist and, probably, a speech-language pathologist that specializes in Autism and social skills/social communication.
You do not say how old you are but I am presuming you are no longer in schools or college, so accessing services that way may not be an issue for you right now. If you do decide to return to school, it might be handy to have the diagnosis so you can access services if you need them. Having an official diagnosis will also help if you decide to seek treatment and submit it through insurance, e.g. a social skills group or individual social skills training. Getting insurance to cover that without an official dx will be very tricky.
I would highly recommend, if you haven't already done so, that you read John Elder Robison's books. He describes what it was like growing up without the diagnosis, how Asperger's affected his life, and how getting the diagnosis at age 40 helped him better understand why he was the way he was and gave him new insight into why he was different. If you ever get the chance to see him speak, do! He's fantastic.
OP, if you'd like more info, feel free to MeMail me.
posted by absquatulate at 11:33 AM on June 18, 2013 [3 favorites]