Is it better to be officially autistic rather than openly strange?
August 22, 2012 6:43 PM Subscribe
Is it useful for me, as someone in my late forties, to seek a diagnosis as a high-ish functioning autistic (which, after some research, I'm fairly sure I am) in order to have a clear identity rather than being "that creepy old man". Which isn't terribly good for my self-esteem among other things.
I'm nearly fifty years old. I've known for almost all my life that I'm a freak and strange person. A few months ago, I read the AQ test for autistic spectrum stuff. To begin with (just reading the questions, before I got on to scoring) I though "huh", then "that's odd", then "what the fuck, so that's a symptom?" Then I scored over 37 (I did the test several times to make sure). Then, after some reading around the subject, the structures that I'd built to try to pass as human fell apart, though I'm still alive and functioning, so it's not exactly panic stations. I'm fairly certain I am, as they say, on the spectrum (as my entire life so far supports the hypothesis, not just the test). It would be handy for employers and aquaintances to know that, and to know that I'm not a creepy weirdo deliberately.
I realise that people on MeFi are fairly dismissive of "self diagnosed Aspies", but I have well over forty years of track record dealing with this shit, and I find the term "Aspie" too twee to be true, so believe me, that's not how I want to manifest.
Question: Is it of use to be diagnosed and Out about this sort of thing in this day and age or does it lead to further difficulties? Particularly employment difficulties - in my case it will be the choice between being a "creepy eccentric weirdo" rather than someone with a medical condition, but I'm wondering whether the vaguely strange person is more employable.
Wrinkle:
I don't like the idea of going through my GP: To be honest, it's how I've always been, and I find it difficult to consider it as a medical condition, whatever the learned literature says. I can't think of myself as ill as I'm never going to get better, and can't see myself arguing my case with my GP to get a diagnosis (they're very good about prescribing pills as needed, but they do have a need to be right about everything - I wonder whether this might not be an argument zone, GP-wise).
I think of it rather like being a short person - never going to be able to fetch things down from the top shelf without a stepladder, but that doesn't mean they're ill, just short. Similarly, as long as I have reliable structure and colleagues who tell me what they want rather than expecting me to guess, I do fine, but many social occasions leave me completely adrift, and now that I know that I'm adrift, it's become more difficult. So is it possible to go direct to a professsional organisation who deals with this stuff rather than negotiating with a GP? Basically all I want is a diagnosis. If I can say "I'm X type of person and A MEDICAL PROFESSIONAL SAYS SO and PEOPLE LIKE ME need x, y and z", I think it might carry more weight than saying "I'd prefer it if x, y and z", because people are wise to my whining by now. Sad but true. I don't even care if it's a fairly obscure diagnosis, as long as it sounds good.
Frankly, I'm used to not getting x, y and z, but it would make my life easier.
So, I'm a bit of hypocrite: I'm quite prepared to represent my state of being as a medical difficulty if it will help me in my life, but to be honest I just think of it as what I am.
Are there people out there who, at an advanced age, have done this? Does it help? Does it hinder? Is it worse to be officially autistic rather than just a weirdo?
Only really interested in responses from people who are officially on the spectrum, their relatives or professionals who deal with this stuff: people with direct experience. I have Googled it and read quite a few books, so anything you turn up by Googling is probably going to be old news to me. But people speaking from their experience rather than their imagination are gold.
I've probably not put this very well, as I'm trying to be off-hand about it. I don't feel off-hand. I feel like I'm playing poker for my life, and I want to make sure I lay the cards in the best possible way, but have not idea what the rules of the game are.
I'm in London, UK, by the way.
I'm nearly fifty years old. I've known for almost all my life that I'm a freak and strange person. A few months ago, I read the AQ test for autistic spectrum stuff. To begin with (just reading the questions, before I got on to scoring) I though "huh", then "that's odd", then "what the fuck, so that's a symptom?" Then I scored over 37 (I did the test several times to make sure). Then, after some reading around the subject, the structures that I'd built to try to pass as human fell apart, though I'm still alive and functioning, so it's not exactly panic stations. I'm fairly certain I am, as they say, on the spectrum (as my entire life so far supports the hypothesis, not just the test). It would be handy for employers and aquaintances to know that, and to know that I'm not a creepy weirdo deliberately.
I realise that people on MeFi are fairly dismissive of "self diagnosed Aspies", but I have well over forty years of track record dealing with this shit, and I find the term "Aspie" too twee to be true, so believe me, that's not how I want to manifest.
Question: Is it of use to be diagnosed and Out about this sort of thing in this day and age or does it lead to further difficulties? Particularly employment difficulties - in my case it will be the choice between being a "creepy eccentric weirdo" rather than someone with a medical condition, but I'm wondering whether the vaguely strange person is more employable.
Wrinkle:
I don't like the idea of going through my GP: To be honest, it's how I've always been, and I find it difficult to consider it as a medical condition, whatever the learned literature says. I can't think of myself as ill as I'm never going to get better, and can't see myself arguing my case with my GP to get a diagnosis (they're very good about prescribing pills as needed, but they do have a need to be right about everything - I wonder whether this might not be an argument zone, GP-wise).
I think of it rather like being a short person - never going to be able to fetch things down from the top shelf without a stepladder, but that doesn't mean they're ill, just short. Similarly, as long as I have reliable structure and colleagues who tell me what they want rather than expecting me to guess, I do fine, but many social occasions leave me completely adrift, and now that I know that I'm adrift, it's become more difficult. So is it possible to go direct to a professsional organisation who deals with this stuff rather than negotiating with a GP? Basically all I want is a diagnosis. If I can say "I'm X type of person and A MEDICAL PROFESSIONAL SAYS SO and PEOPLE LIKE ME need x, y and z", I think it might carry more weight than saying "I'd prefer it if x, y and z", because people are wise to my whining by now. Sad but true. I don't even care if it's a fairly obscure diagnosis, as long as it sounds good.
Frankly, I'm used to not getting x, y and z, but it would make my life easier.
So, I'm a bit of hypocrite: I'm quite prepared to represent my state of being as a medical difficulty if it will help me in my life, but to be honest I just think of it as what I am.
Are there people out there who, at an advanced age, have done this? Does it help? Does it hinder? Is it worse to be officially autistic rather than just a weirdo?
Only really interested in responses from people who are officially on the spectrum, their relatives or professionals who deal with this stuff: people with direct experience. I have Googled it and read quite a few books, so anything you turn up by Googling is probably going to be old news to me. But people speaking from their experience rather than their imagination are gold.
I've probably not put this very well, as I'm trying to be off-hand about it. I don't feel off-hand. I feel like I'm playing poker for my life, and I want to make sure I lay the cards in the best possible way, but have not idea what the rules of the game are.
I'm in London, UK, by the way.
That's really not being hypocritical-- the point of a diagnosis shouldn't be to make you think someone's wrong with you, but to get help in ways that will make your life easier (and which other people won't necessarily anticipate if they're not like you). The language around ability/disability is difficult for that reason-- it's "just the way you are," even if it can be helped. I am speaking as someone who was friends for several years with an older man with diagnosed Asperger's. I have never been tested and don't believe that I have Asperger's, but we talked about our personal lives often, and it seemed that one thing that his diagnosis helped him with was to feel supported by someone else with authority on the matter (in this case, his therapist). It's up to you whether that intangible benefit is worth it or not, I would think. Also, learning more about Asperger's helped him to think of his difficulties as a direct result of problems with cognitive/executive function, rather than immutably "creepy" or "weird" attributes. He never wrote off bad behavior (in a shady way) in the time that I knew him, but it seemed healthy for his self-esteem. The thing is, you need to be evaluated to know that you have Asperger's. I think whether you have it or not, it could help you with your self-understanding.
posted by stoneandstar at 7:08 PM on August 22, 2012 [1 favorite]
posted by stoneandstar at 7:08 PM on August 22, 2012 [1 favorite]
I was diagnosed when I was nearly 30.
I wouldn't say it's been life changing. It was helpful on some level - mostly, it just allowed me to put a finger on the general weirdness that I experience relative to everyone else.
I will say that having a diagnosis from an actual doctor gave it (to me) an imprimatur that it didn't have before. That said, it still takes the diagnosis and a buck fifty to buy a coke and socks go one one foot at a time, same as before.
You're right about defining the disability as a non-character flaw and more as a simple reality. Once you discover how broken almost everybody is, you'll revel in the fact that being aspie is a great sort of brokenness to be sometimes.
If you think it will make you feel better, or gain you something - if you have some goal you are working towards (greater self understanding, or something) - then you should pursue a diagnosis. With a good professional, I think it could be a big help.
If you just want to feel better about yourself.... well, get a dog or something. I dunno. And anyway, finding a good therapist/psychologist/psychiatrist/shrink/whatever is sort of a challenge in and of itself. Maybe it's not worth it to you if you can help yourself.
Being diagnosed was sort of Dumbo's Feather for me - it just allowed me to reframe the question in a way that was "official" - if that makes sense. But even with that, at the end of the day, I still had to put in the same work to relate and not be weird that I had to before. I just had a good, official, reason for having to work harder at it.
posted by Pogo_Fuzzybutt at 7:21 PM on August 22, 2012 [3 favorites]
I wouldn't say it's been life changing. It was helpful on some level - mostly, it just allowed me to put a finger on the general weirdness that I experience relative to everyone else.
I will say that having a diagnosis from an actual doctor gave it (to me) an imprimatur that it didn't have before. That said, it still takes the diagnosis and a buck fifty to buy a coke and socks go one one foot at a time, same as before.
You're right about defining the disability as a non-character flaw and more as a simple reality. Once you discover how broken almost everybody is, you'll revel in the fact that being aspie is a great sort of brokenness to be sometimes.
If you think it will make you feel better, or gain you something - if you have some goal you are working towards (greater self understanding, or something) - then you should pursue a diagnosis. With a good professional, I think it could be a big help.
If you just want to feel better about yourself.... well, get a dog or something. I dunno. And anyway, finding a good therapist/psychologist/psychiatrist/shrink/whatever is sort of a challenge in and of itself. Maybe it's not worth it to you if you can help yourself.
Being diagnosed was sort of Dumbo's Feather for me - it just allowed me to reframe the question in a way that was "official" - if that makes sense. But even with that, at the end of the day, I still had to put in the same work to relate and not be weird that I had to before. I just had a good, official, reason for having to work harder at it.
posted by Pogo_Fuzzybutt at 7:21 PM on August 22, 2012 [3 favorites]
I have two sons and an ex husband who likely all qualify as somewhere on the spectrum. I doubt my ex will ever get diagnosed. It most likely would hurt him professionally rather than help. He has a spiffy title and apparently makes good money in a setting where his issues are not a big problem. He once told me that being married to me helped him with the social piece of it, and thereby made him better at his job in that regard, so perhaps that was enough for his needs.
I considered getting an official diagnosis for my sons at one time in hopes it would get insurance coverage for a referal to the Gifted Development Center in Denver Colorado. It turned out I could self refer and then the trip fell through amyway for other reasons. I homeschooled my sons and I have long told them to plan on being self employed. I did not need a formal diagnosis to accommodate their needs while homeschooling and most likely a formal diagnosis won't help them become successful businessmen. If we had a specific goal which a formal diagnosis would help with, I would not be averse to getting it made official. Without that, I think it is generally better to avoid the label and simply make lifestyle choices which suit their needs.
I would suggest you research policies at your place of employment and research applicable disability laws for the U.K. If you determine that you are legally entitled to accommodation for your handicap, you can consider getting a diagnosis. But I would caution you to do some additional research and try to discern if it would really help. Labels often do more social harm than good. There is always a difference between your de jure rights and de facto results.
I have to go. If I think of anything else, I may pop back in later.
Best of luck.
posted by Michele in California at 7:23 PM on August 22, 2012
I considered getting an official diagnosis for my sons at one time in hopes it would get insurance coverage for a referal to the Gifted Development Center in Denver Colorado. It turned out I could self refer and then the trip fell through amyway for other reasons. I homeschooled my sons and I have long told them to plan on being self employed. I did not need a formal diagnosis to accommodate their needs while homeschooling and most likely a formal diagnosis won't help them become successful businessmen. If we had a specific goal which a formal diagnosis would help with, I would not be averse to getting it made official. Without that, I think it is generally better to avoid the label and simply make lifestyle choices which suit their needs.
I would suggest you research policies at your place of employment and research applicable disability laws for the U.K. If you determine that you are legally entitled to accommodation for your handicap, you can consider getting a diagnosis. But I would caution you to do some additional research and try to discern if it would really help. Labels often do more social harm than good. There is always a difference between your de jure rights and de facto results.
I have to go. If I think of anything else, I may pop back in later.
Best of luck.
posted by Michele in California at 7:23 PM on August 22, 2012
If you can find Tim Page's book on his relatively late-in-life diagnosis of Asperger's Syndrome, Parallel Play, I think you might find it relevant to your experience (I don't know if it had a UK publication, so it might be difficult to track down).
You also mention two options: not pursuing evaluation and diagnosis and having unchanged behaviors, and pursuing evaluation and diagnosis and having the potential stigma of a diagnosis. I would suggest that there is another option, of pursuing therapy specifically related to improving your ability to recognize social cues from others, and inappropriate behaviors from yourself, without focusing on a diagnosis. On the other hand, that may not be an option for you financially.
Best of luck to you!
posted by Sidhedevil at 8:02 PM on August 22, 2012 [5 favorites]
You also mention two options: not pursuing evaluation and diagnosis and having unchanged behaviors, and pursuing evaluation and diagnosis and having the potential stigma of a diagnosis. I would suggest that there is another option, of pursuing therapy specifically related to improving your ability to recognize social cues from others, and inappropriate behaviors from yourself, without focusing on a diagnosis. On the other hand, that may not be an option for you financially.
Best of luck to you!
posted by Sidhedevil at 8:02 PM on August 22, 2012 [5 favorites]
Eh. I got a 46, and I'm not on the spectrum.
Having some diagnoses (avoidant personality, bipolar, ADHD) has helped me; others have been less useful. The biggest help has been when the diagnosis led to either a) validation ("I'm not crazy - well, I am, but in a way that they totally study and treat") or b) access to help (prescription meds, specific therapy techniques, time off work when my symptoms flare up.) Autism-spectrum diagnoses are a heck of a lot more useful when you're three years old than when you're fifty.
I would really caution you against going and seeking out a particular diagnosis, in any case. It's not really the right spirit, and it also annoys the heck out of doctors.
Also, there is plenty of stigma attached to the word "autistic;" people have in mind something like Dustin Hoffman in Rain Man, or expect you to be a Very Serious Problem, or whatever. It's a bit like "borderline" or "bipolar" in that it can buy you trouble to carry the label around; I still only "out" myself very selectively she says as she replies via a sock puppet account to a guy who felt the need to post anonymously. Even doctors treat you differently, when they see you for totally unrelated things.
This is the part where I tell you about the internist who asked me about suicidal ideation from ten years previous when discussing the results of a recent MRI. It was literally "hi, nice to meet you, I'm Dr. So-And-So, I read this random thing in your charts that is kind of funny, oh how's that suicidal thinking going." I'm not going to blame him for how things started melting apart for me a few months later (after a long period of stability,) but it's not like he did me a service there, either. He also quite obviously didn't understand how to deal with someone with that kind of diagnosis in their charts, but tried his hand at it anyway. I'm reasonably confident the medical team suspected my symptoms were actually all in my head, and I know they put me through some unnecessarily painful testing before believing me.
Knowing I'm avoidant and get panic attacks and suffer from bipolar disorder hasn't changed many of my symptoms or any of the underlying biological or (historic) environmental causes behind them, also. I still get intractable depressions. Now I just know I'm supposed to fight off negative self-talk, and that negative self-talk is totally normal in these situations, and I should probably refrain from trusting my own feelings on pretty much every subject known to mankind. Whee.
I guess... go for it if you feel like it, but be aware it's probably not the big basket of whoohoo (or social acceptance) that you're looking for.
posted by Fee Phi Faux Phumb I Smell t'Socks o' a Puppetman! at 8:24 PM on August 22, 2012 [5 favorites]
Having some diagnoses (avoidant personality, bipolar, ADHD) has helped me; others have been less useful. The biggest help has been when the diagnosis led to either a) validation ("I'm not crazy - well, I am, but in a way that they totally study and treat") or b) access to help (prescription meds, specific therapy techniques, time off work when my symptoms flare up.) Autism-spectrum diagnoses are a heck of a lot more useful when you're three years old than when you're fifty.
I would really caution you against going and seeking out a particular diagnosis, in any case. It's not really the right spirit, and it also annoys the heck out of doctors.
Also, there is plenty of stigma attached to the word "autistic;" people have in mind something like Dustin Hoffman in Rain Man, or expect you to be a Very Serious Problem, or whatever. It's a bit like "borderline" or "bipolar" in that it can buy you trouble to carry the label around; I still only "out" myself very selectively she says as she replies via a sock puppet account to a guy who felt the need to post anonymously. Even doctors treat you differently, when they see you for totally unrelated things.
This is the part where I tell you about the internist who asked me about suicidal ideation from ten years previous when discussing the results of a recent MRI. It was literally "hi, nice to meet you, I'm Dr. So-And-So, I read this random thing in your charts that is kind of funny, oh how's that suicidal thinking going." I'm not going to blame him for how things started melting apart for me a few months later (after a long period of stability,) but it's not like he did me a service there, either. He also quite obviously didn't understand how to deal with someone with that kind of diagnosis in their charts, but tried his hand at it anyway. I'm reasonably confident the medical team suspected my symptoms were actually all in my head, and I know they put me through some unnecessarily painful testing before believing me.
Knowing I'm avoidant and get panic attacks and suffer from bipolar disorder hasn't changed many of my symptoms or any of the underlying biological or (historic) environmental causes behind them, also. I still get intractable depressions. Now I just know I'm supposed to fight off negative self-talk, and that negative self-talk is totally normal in these situations, and I should probably refrain from trusting my own feelings on pretty much every subject known to mankind. Whee.
I guess... go for it if you feel like it, but be aware it's probably not the big basket of whoohoo (or social acceptance) that you're looking for.
posted by Fee Phi Faux Phumb I Smell t'Socks o' a Puppetman! at 8:24 PM on August 22, 2012 [5 favorites]
To pursue your "short person" metaphor. It sounds like where you're at currently is that you're short, and you're building stepladders for yourself. But you're not a carpenter; your stepladders do the job, but you don't know if they will last, if they're safe, if it's actually the easiest way for you to reach things.
Getting a diagnosis/doctor is the equivalent of getting a carpenter there who can build a step-ladder. But even better, they know all about step ladders; they've built dozens, they can recommend one just for you that will do all the things you want and none of the things you don't want. They can make sure it's safe, see when you need a new one or a different type etc. This is not about pretending you're not short, or making you wear stilts all the time; it's just about getting a better step ladder.
If you don't feel comfortable with your GP, no big deal. Get another one, get a referral to a psychiatrist, or a counsellor, or any type of professional you think would work. Also consider that your antipathy towards getting a professional involved probably reflects your personal comfort levels about any condition/s you may have, and may also be a manifestation of those conditions.
Also consider that it may be involved with a fear of invalidation (you don't have X!) or discrimination (You do have X! Get away from me!).
In some respects, yes, it's just a name. Maybe you'll get that name, maybe you'll get a different one, maybe you won't get a name at all. What you will get are questions about your needs and what you would like, and efforts to meets those needs and preferences - name or no. And that's a good thing. You're very experienced at being you, but a professional is very experienced with people like you, who have found different kinds of step-ladders that work for them.
In this respect, a singular focus on the diagnosis is unhelpful. The diagnosis only exists as a lever to help understand and meet your needs. In and of itself, it's not really anything.
posted by smoke at 8:40 PM on August 22, 2012 [2 favorites]
Getting a diagnosis/doctor is the equivalent of getting a carpenter there who can build a step-ladder. But even better, they know all about step ladders; they've built dozens, they can recommend one just for you that will do all the things you want and none of the things you don't want. They can make sure it's safe, see when you need a new one or a different type etc. This is not about pretending you're not short, or making you wear stilts all the time; it's just about getting a better step ladder.
If you don't feel comfortable with your GP, no big deal. Get another one, get a referral to a psychiatrist, or a counsellor, or any type of professional you think would work. Also consider that your antipathy towards getting a professional involved probably reflects your personal comfort levels about any condition/s you may have, and may also be a manifestation of those conditions.
Also consider that it may be involved with a fear of invalidation (you don't have X!) or discrimination (You do have X! Get away from me!).
In some respects, yes, it's just a name. Maybe you'll get that name, maybe you'll get a different one, maybe you won't get a name at all. What you will get are questions about your needs and what you would like, and efforts to meets those needs and preferences - name or no. And that's a good thing. You're very experienced at being you, but a professional is very experienced with people like you, who have found different kinds of step-ladders that work for them.
In this respect, a singular focus on the diagnosis is unhelpful. The diagnosis only exists as a lever to help understand and meet your needs. In and of itself, it's not really anything.
posted by smoke at 8:40 PM on August 22, 2012 [2 favorites]
Just because you have a diagnosis does not mean that it *has* to affect your professional opportunities. As the patient, it is your right to determine who receives this information. If you want a nuanced diagnosis, a psychologist who specializes in/is familiar with adult autistic spectrum disorders is your best bet. My personal experience working with clients has resulted in my impression that most GP's are not the best at discriminating the AS disorders from plain old quirkiness or other issues.
I do think this could be tremendously useful for you with regards to your self-identity and allow you to seek out additional coping skills to allow you to live more comfortably in the so-called "neurotypical" world. It might also allow you to communicate more effectively your needs in social situations and resolve any miscommunications you may run into. I'm so sorry to hear that you've been labeled as creepy. While it is true that people with Asperger's do think differently than many other people, there are a lot of tremendously amazing and successful people out there. Just as an adult with ADHD has had to learn to accommodate their attentional difficulties, you've likely learned ways to interact more successfully with others than you did as a kiddo. Keep in mind, too, that this truly is a spectrum, and who knows where on the spectrum you lie. I'm a bit of a nerd, so YMMV, but I can't see how finding out more, at least for yourself, can cause you problems.
IANYP (I am not your psychologist) but feel free to MeMail me if you have some more questions, adult Apsergers is something I've had an interest in and worked with to some extent, so I may be able to answer a few questions you might have or point you in the direction of some readings.
posted by gilsonal at 9:43 PM on August 22, 2012
I do think this could be tremendously useful for you with regards to your self-identity and allow you to seek out additional coping skills to allow you to live more comfortably in the so-called "neurotypical" world. It might also allow you to communicate more effectively your needs in social situations and resolve any miscommunications you may run into. I'm so sorry to hear that you've been labeled as creepy. While it is true that people with Asperger's do think differently than many other people, there are a lot of tremendously amazing and successful people out there. Just as an adult with ADHD has had to learn to accommodate their attentional difficulties, you've likely learned ways to interact more successfully with others than you did as a kiddo. Keep in mind, too, that this truly is a spectrum, and who knows where on the spectrum you lie. I'm a bit of a nerd, so YMMV, but I can't see how finding out more, at least for yourself, can cause you problems.
IANYP (I am not your psychologist) but feel free to MeMail me if you have some more questions, adult Apsergers is something I've had an interest in and worked with to some extent, so I may be able to answer a few questions you might have or point you in the direction of some readings.
posted by gilsonal at 9:43 PM on August 22, 2012
My opinion is it is better to be thought strange than to deal with the label to whoever considers it a meaningful distinction to be a diagnosed Autistic.
Gonna be a bunch of paperwork in the latter case which might be avoidable if you have the option of not going that route. I don't have any idea how you feel about government and insurance and employer forms but that shit might drive you far more bonkers than your bio condition ever will.
Also Fee Phi Faux Phumb I Smell t'Socks o' a Puppetman!'s comment above about seeking a specific diagnosis deserves attention. The process is something like: I am messed up; here is why I think so. You may presume the gatekeepers will readily connect your symptoms to Autism but your doctor might be barely competent and write you down for restraints or shock treatments or tardive dyskensia meds. Psychiatry is not an exact science. More like a healing art.
If you need treatment you should seek out an expert and let them deal with a question like this.
posted by bukvich at 9:55 PM on August 22, 2012
Gonna be a bunch of paperwork in the latter case which might be avoidable if you have the option of not going that route. I don't have any idea how you feel about government and insurance and employer forms but that shit might drive you far more bonkers than your bio condition ever will.
Also Fee Phi Faux Phumb I Smell t'Socks o' a Puppetman!'s comment above about seeking a specific diagnosis deserves attention. The process is something like: I am messed up; here is why I think so. You may presume the gatekeepers will readily connect your symptoms to Autism but your doctor might be barely competent and write you down for restraints or shock treatments or tardive dyskensia meds. Psychiatry is not an exact science. More like a healing art.
If you need treatment you should seek out an expert and let them deal with a question like this.
posted by bukvich at 9:55 PM on August 22, 2012
Is it of use to be diagnosed and Out about this sort of thing in this day and age or does it lead to further difficulties?
It can lead to further difficulties at work. Many people have a preconceived notion about people on the spectrum so if you disclose you have HFA they may just pigeonhole you as an other.
It also depends on the "flavor" of your HFA. One of stereotypes of Aspie's is that they are socially clueless.
But not everyone on the spectrum is a social misfit. There are Aspie's who do not have a problem with interpersonal interactions per se -- for example, in a conversation they can be quite aware of social cues, body language, word selection, et cetera. But how they convey their understanding of all the information they are taking in can be off. They may be slow in displaying a reaction or display a muted reaction or no reaction at all.
Obviously, this can be a problem in a conversation. The other person may think you are slow or don't understand something when in fact you are a few steps ahead of them.
(One thing I have heard from many Aspie's is how difficult text based communication is. When you are used to assessing peoples body language, voice tone, et cetera, exchanging emails is like operating without your radar. Just something to keep in mind.)
So, if this is your "flavor", it would be very helpful to disclose to people in your personal life.
posted by mlis at 9:56 PM on August 22, 2012 [1 favorite]
It can lead to further difficulties at work. Many people have a preconceived notion about people on the spectrum so if you disclose you have HFA they may just pigeonhole you as an other.
It also depends on the "flavor" of your HFA. One of stereotypes of Aspie's is that they are socially clueless.
But not everyone on the spectrum is a social misfit. There are Aspie's who do not have a problem with interpersonal interactions per se -- for example, in a conversation they can be quite aware of social cues, body language, word selection, et cetera. But how they convey their understanding of all the information they are taking in can be off. They may be slow in displaying a reaction or display a muted reaction or no reaction at all.
Obviously, this can be a problem in a conversation. The other person may think you are slow or don't understand something when in fact you are a few steps ahead of them.
(One thing I have heard from many Aspie's is how difficult text based communication is. When you are used to assessing peoples body language, voice tone, et cetera, exchanging emails is like operating without your radar. Just something to keep in mind.)
So, if this is your "flavor", it would be very helpful to disclose to people in your personal life.
posted by mlis at 9:56 PM on August 22, 2012 [1 favorite]
On a practical basis, you would not get this diagnosis from your GP, you'd simply be getting a referral to a clinic from him or her. The only clinic I know of does not take self-referrals but there must be one or two, which would give you the option of paying privately.
posted by DarlingBri at 2:15 AM on August 23, 2012
posted by DarlingBri at 2:15 AM on August 23, 2012
I'm not on the spectrum as far as I know. But I have a story that might be relevant to you.
I have always wanted to be considered a hard worker. When someone calls me lazy, it hurts a lot. But I have idiopathic daytime sleepiness. I have had nighttime and daytime sleep tests that confirm I don't have sleep apnea or restless leg syndrome. For some unidentifiable reason, the sleep I get at night isn't restful enough for me.
About a year ago, I started having a really hard time getting restful sleep and I started needing to take naps after work. I usually nap on the weekends but it started getting to the point where I wasn't even napping - I was full-on sleeping during the day for several hours in addition to night. The idea of visiting family, taking a day trip, even going to the mall just sounded exhausting to me.
My husband convinced me to see a sleep specialist because he thought I had sleep apnea. I talked to the doctor and told him how being tired all the time was affecting my life - I was too tired to spend time with friends and do things I enjoy, I was anxious about driving because I have fallen asleep behind the wheel. He looked at me with sympathy and said, "You must be really tired."
Just having a doctor affirm that that wasn't normal and that I wasn't a bad or lazy person made me feel a lot better about myself and my situation. But also, I felt better because I knew that he was a professional and he could help me deal with this.
Getting a diagnosis might be affirming for you that you're not a creepy person. It might help your self esteem in ways that you can't imagine right now. And the doctor might be able to help treat the problem. Worst case, you're not on the spectrum and nothing changes. Best case, you get a diagnosis and a doctor can actually help you. I think you should give it a shot.
posted by kat518 at 6:53 AM on August 23, 2012 [3 favorites]
I have always wanted to be considered a hard worker. When someone calls me lazy, it hurts a lot. But I have idiopathic daytime sleepiness. I have had nighttime and daytime sleep tests that confirm I don't have sleep apnea or restless leg syndrome. For some unidentifiable reason, the sleep I get at night isn't restful enough for me.
About a year ago, I started having a really hard time getting restful sleep and I started needing to take naps after work. I usually nap on the weekends but it started getting to the point where I wasn't even napping - I was full-on sleeping during the day for several hours in addition to night. The idea of visiting family, taking a day trip, even going to the mall just sounded exhausting to me.
My husband convinced me to see a sleep specialist because he thought I had sleep apnea. I talked to the doctor and told him how being tired all the time was affecting my life - I was too tired to spend time with friends and do things I enjoy, I was anxious about driving because I have fallen asleep behind the wheel. He looked at me with sympathy and said, "You must be really tired."
Just having a doctor affirm that that wasn't normal and that I wasn't a bad or lazy person made me feel a lot better about myself and my situation. But also, I felt better because I knew that he was a professional and he could help me deal with this.
Getting a diagnosis might be affirming for you that you're not a creepy person. It might help your self esteem in ways that you can't imagine right now. And the doctor might be able to help treat the problem. Worst case, you're not on the spectrum and nothing changes. Best case, you get a diagnosis and a doctor can actually help you. I think you should give it a shot.
posted by kat518 at 6:53 AM on August 23, 2012 [3 favorites]
I have done what you sound you want to do: get a diagnosis and stop right there; no pills, no therapy. I haven't done it late in my life, but at the earliest possible time; in the case of a personality disorder, that is well beyond childhood/youth. I went on my own terms as a young adult, still for the same reason: to have a name for "whatever it is that makes me different from other people". I never felt "ill" or that I needed to change, but I did feel I needed something to tell people to explain myself. It sounds like this is the main goal for you, to have a shortcut to explain why you prefer x, y and z without telling the story of your life each time.
If that is what you're after, a diagnosis will make you feel better. You don't have to tell everyone, but you can. Even if you never bring it up, it will give you some peace of mind to know you could. I'd say it's an emergency thing to pull out if needed. You say "high functioning", so I assume you wouldn't need it much, if at all, and it is just something you do for yourself, not to justify quirks to employers. A diagnosis would help you understand yourself better, and that is nothing that results in being "less employable". If anything, it helps you to see your weaknesses and strengths better and find work where your quirks won't matter.
posted by MinusCelsius at 9:27 AM on August 23, 2012
If that is what you're after, a diagnosis will make you feel better. You don't have to tell everyone, but you can. Even if you never bring it up, it will give you some peace of mind to know you could. I'd say it's an emergency thing to pull out if needed. You say "high functioning", so I assume you wouldn't need it much, if at all, and it is just something you do for yourself, not to justify quirks to employers. A diagnosis would help you understand yourself better, and that is nothing that results in being "less employable". If anything, it helps you to see your weaknesses and strengths better and find work where your quirks won't matter.
posted by MinusCelsius at 9:27 AM on August 23, 2012
It all depends on what you expect a diagnosis to do for you. My partner turned 50 this year and pursued and got a formal diagnosis because of problems at work. Over the course of his adult life he has lost several jobs because of AS.
In the UK a formal diagnosis offers some measure of protection from what was happening and the team who saw him agreed completely with his reasoning. It was a long process which included interviews with his surviving parent, you will have to get the referral through your GP if you are in the UK.
The thing about your GP is if you go to them with a cogent argument for referral they pretty much should respect your request. Otherwise you change your GP.
In a era of shrinking health budgets be prepared for a bit of toing and froing though.
There aren't many people who pursue a formal Dx at this age so lots of the services the unit runs weren't as helpful to us, but there were some very good books and links that gave us lots of things to think about.
I also informally mentor a young medic who was diagnosed in his 20s who again find the formal Dx gives an element of employment protection.
Feel free to Memail if you need more specific advice.
posted by Wilder at 2:25 PM on August 24, 2012 [1 favorite]
In the UK a formal diagnosis offers some measure of protection from what was happening and the team who saw him agreed completely with his reasoning. It was a long process which included interviews with his surviving parent, you will have to get the referral through your GP if you are in the UK.
The thing about your GP is if you go to them with a cogent argument for referral they pretty much should respect your request. Otherwise you change your GP.
In a era of shrinking health budgets be prepared for a bit of toing and froing though.
There aren't many people who pursue a formal Dx at this age so lots of the services the unit runs weren't as helpful to us, but there were some very good books and links that gave us lots of things to think about.
I also informally mentor a young medic who was diagnosed in his 20s who again find the formal Dx gives an element of employment protection.
Feel free to Memail if you need more specific advice.
posted by Wilder at 2:25 PM on August 24, 2012 [1 favorite]
This thread is closed to new comments.
posted by unknowncommand at 7:03 PM on August 22, 2012