If you are officially labeled as an autist (or anything else), some people or institutions may use this information to discriminate against you.
Perhaps the risk is extremely low given the current British law and culture; I don’t know. But how much you are willing to bet that the law and culture will remain the same 20 years later? Once you get the official diagnosis, you might be later legally required to disclose it, so this step is irreversible.
I have checked the situation in Slovakia (which of course has a very different law and culture), and there are institutions that quite openly discriminate against autists. Like, medical schools that require you to declare that you do not have any mental condition mentioned in a list (autism included), or internal rules of police departments not to hire autists. I wasn’t aware of that previously. I am not really interested in police work, and I am already too old for school, but this made me update strongly against seeking formal diagnosis for my children, should any autistic symptoms manifest at them. I want to keep their options open; and I also worry about what else may happen 20 years later.
In 2019 there was a scandal in Czechia, where a high-status psychiatrist Jaroslav Matýs said in an interview for a newspaper (article paywalled) that autists are “unable to distinguish between good and evil”. He then proceeded to talk about psychopaths in politics, which kinda implied, although he didn’t say that explicitly, that the conditions are kinda related. (The topic of the interview was Greta Thunberg, and as we all know, politics is the mindkiller.) There was a public outrage, and the guy resigned from his position as a chairman of a child section of Czech psychiatrist association. He still insists that the only mistake he made was “talking publicly in a manner accessible to lay audience” (source). Okay, the guy was punished for his idiotic opinions, but the fact that he was previously able to hold such position while having such opinions, is disturbing. (Imagine a parallel universe, where instead of giving a public interview, he just kept writing expert reports on people like you or me.)
To address the other things you mentioned:
A formal diagnosis means you can ask for special consideration and usually get it, even if you don’t strictly need it.
Do you have detailed information about what specific accomodations would actually be available for your diagnosis? (Maybe you are too optimistic.)
Many people seem to find a formal diagnosis helpful for understanding themselves (are there advantages over a self-diagnosis?) and for explaining themselves to others.
I think it is relatively easy for an intelligent and sane person to correctly diagnose themselves as having “autism or something similar”. The problem is, you probably have no idea what exactly “something similar” involves. An expert could potentially tell you that you have “X, which is similar to autism, but not the same thing”, or perhaps that you have “autism and X”. I hope you agree that such diagnosis would be even better for understanding yourself. (An example of X could be ADHD.)
I could just explain to people that eg I don’t like last-minute changes of plans. Is there an advantage to explaining to other people that it’s because I’m autistic, rather than just saying it’s part of my personality?
The diagnosis implies a difference between “mere preference” or “just something you never tried to overcome”, and “something that is really difficult (maybe impossible) for you to overcome”.
Because, in general, it is sometimes good to tell people “you know, if you overcome your dislike for X, it will allow you to get all these things that you may like a lot”. (I don’t like exercising. But I do it anyway, because of health concerns.) But if I know that X is simply not an option for you, I won’t waste your time talking about how useful it could be. Though, different people will react differently. Some believe that any diagnosis can be overcome by sheer willpower.
Is it socially responsible to seek diagnosis for borderline cases?
Yes. Suppose that autism is on a spectrum from 0 to 10, where 0 is “obviously not an autist” and 10 is “obviously an autist”. Your worry is that it is socially irresponsible for a 3 or a 5 to seek diagnosis, because they are obviously not a 10. But if this becomes a norm, then tomorrow a 6 will also feel guilty for seeking diagnosis. And after tomorrow, so will a 7 and maybe an 8; which is probably not the outcome that you want.
Also, consider the fact that you are (I assume) highly intelligent, which means you are better able to cope with your symptoms. You can partially overcome your missing social instincts by reading literature that explains human behavior explicitly, and then applying the lessons to specific situations; sometimes you get things right. Imagine a person with the same degree of autism, but IQ 100. Their situation would be much worse, do you agree? So maybe instead of “not too autistic” you are “intelligent enough to overcome or alleviate some symptoms of autism”. You may think of yourself as 3 on the autistic scale, but you might actually be a smart 6 who is able to function at the 3′s level.
You don’t have to be a “perfect autist” in order to be an autist; not all autists have all symptoms. Leave the diagnosis to an expert.
Conclusion: I think the best way would be to get diagnosed (also for adjacent disorders) by an actual expert, so that you can benefit from the self-knowledge… but somehow without leaving a written record of the diagnosis, so that you can deny it later. Not sure how difficult it would be to arrange that.
The flip side of being able to discriminate against is that also discrimination for is also blocked.
I did not access the paywalled article but I want to make more explicit about what is and is not problematic about comparing to psychopaths. There can be a pretty standard “monstrous criminal” kind of association which is handy for demonizing segments of populations (and when you take the term “psychopath” as “psycho” and “path” it means “mentally pathological”). However if some hedge fund manager can become very efficient at numbers running economical games because they can ruthless crush the numbers and make drastic actions because they disinclude/never include their impact on the lives of others that can be away for a psychopath to exist in a society constructively. In this sense it need not be a prejorative.
I shouldn’t really guess what someone else is meaning but one explanation for higher fraction of LGBQT+ people among autist population vs not that has been raised is that autists are more ready to believe in their own experience and are less sensitive to the kind of cues that would express social shame. The term “gay” used to mean happy and one can imagine that the contrast would be that instead of feeling sad and shamed for their sexual deviancy a person flourishes as something other people want to look down on. For a neurotypical such emotions might be at the core of morality making for a kind of “When in Rome do as the romans do” or “bad is everything that makes the herd attack and abandon you” kind of attitude. Even if this was meant or that I can recall things in that direction “the popularization” seems to have rather critically failed (with the underlying beliefs being hateful a likely mechanism why). It is not surprising for psychiatry as a field to be tempted to view variation and divergence as pathological. In this way this can be a systematic issue as the kind of wrong exhibited might not be selected against but selected for.
In order for the ruthless game to be socially productive the rules around the game need to be robust enough that adverse effects to other systems can be managed. The limits will be tested to the extent that there is constant grinding against them. So all possible states are relevant to be visited in great magnitude.
You need supervisors and referees that independently and actively respond to shady / socially undesired things (or structural limits to the same effect). This is the accommodation this kind of person needs. Otherwise there is going to be constant “This is why we can’t have good things”. The ethics board that is a joykill about canceling a lot of very revealing science experiments.
Concepts previously used in the old parent comment refressed by recent events. The downturn of “drastic actions” is from this perspective a lot more clear.
Thank you. The tail risks of some kind of future discrimination are the thing that most worries me about seeking a formal diagnosis, so the examples of professional bodies which are committing discrimination are very helpful. You’re right that the future is uncertain and British culture could change for the worse, or I might want to emigrate to a country with a different culture. The idea of an unrecorded diagnosis is interesting, but I’m not sure how practical it is. Perhaps I’ll just hang out on autism websites.
If you are officially labeled as an autist (or anything else), some people or institutions may use this information to discriminate against you.
Perhaps the risk is extremely low given the current British law and culture; I don’t know. But how much you are willing to bet that the law and culture will remain the same 20 years later? Once you get the official diagnosis, you might be later legally required to disclose it, so this step is irreversible.
I have checked the situation in Slovakia (which of course has a very different law and culture), and there are institutions that quite openly discriminate against autists. Like, medical schools that require you to declare that you do not have any mental condition mentioned in a list (autism included), or internal rules of police departments not to hire autists. I wasn’t aware of that previously. I am not really interested in police work, and I am already too old for school, but this made me update strongly against seeking formal diagnosis for my children, should any autistic symptoms manifest at them. I want to keep their options open; and I also worry about what else may happen 20 years later.
In 2019 there was a scandal in Czechia, where a high-status psychiatrist Jaroslav Matýs said in an interview for a newspaper (article paywalled) that autists are “unable to distinguish between good and evil”. He then proceeded to talk about psychopaths in politics, which kinda implied, although he didn’t say that explicitly, that the conditions are kinda related. (The topic of the interview was Greta Thunberg, and as we all know, politics is the mindkiller.) There was a public outrage, and the guy resigned from his position as a chairman of a child section of Czech psychiatrist association. He still insists that the only mistake he made was “talking publicly in a manner accessible to lay audience” (source). Okay, the guy was punished for his idiotic opinions, but the fact that he was previously able to hold such position while having such opinions, is disturbing. (Imagine a parallel universe, where instead of giving a public interview, he just kept writing expert reports on people like you or me.)
To address the other things you mentioned:
Do you have detailed information about what specific accomodations would actually be available for your diagnosis? (Maybe you are too optimistic.)
I think it is relatively easy for an intelligent and sane person to correctly diagnose themselves as having “autism or something similar”. The problem is, you probably have no idea what exactly “something similar” involves. An expert could potentially tell you that you have “X, which is similar to autism, but not the same thing”, or perhaps that you have “autism and X”. I hope you agree that such diagnosis would be even better for understanding yourself. (An example of X could be ADHD.)
The diagnosis implies a difference between “mere preference” or “just something you never tried to overcome”, and “something that is really difficult (maybe impossible) for you to overcome”.
Because, in general, it is sometimes good to tell people “you know, if you overcome your dislike for X, it will allow you to get all these things that you may like a lot”. (I don’t like exercising. But I do it anyway, because of health concerns.) But if I know that X is simply not an option for you, I won’t waste your time talking about how useful it could be. Though, different people will react differently. Some believe that any diagnosis can be overcome by sheer willpower.
Yes. Suppose that autism is on a spectrum from 0 to 10, where 0 is “obviously not an autist” and 10 is “obviously an autist”. Your worry is that it is socially irresponsible for a 3 or a 5 to seek diagnosis, because they are obviously not a 10. But if this becomes a norm, then tomorrow a 6 will also feel guilty for seeking diagnosis. And after tomorrow, so will a 7 and maybe an 8; which is probably not the outcome that you want.
Also, consider the fact that you are (I assume) highly intelligent, which means you are better able to cope with your symptoms. You can partially overcome your missing social instincts by reading literature that explains human behavior explicitly, and then applying the lessons to specific situations; sometimes you get things right. Imagine a person with the same degree of autism, but IQ 100. Their situation would be much worse, do you agree? So maybe instead of “not too autistic” you are “intelligent enough to overcome or alleviate some symptoms of autism”. You may think of yourself as 3 on the autistic scale, but you might actually be a smart 6 who is able to function at the 3′s level.
You don’t have to be a “perfect autist” in order to be an autist; not all autists have all symptoms. Leave the diagnosis to an expert.
Conclusion: I think the best way would be to get diagnosed (also for adjacent disorders) by an actual expert, so that you can benefit from the self-knowledge… but somehow without leaving a written record of the diagnosis, so that you can deny it later. Not sure how difficult it would be to arrange that.
The flip side of being able to discriminate against is that also discrimination for is also blocked.
I did not access the paywalled article but I want to make more explicit about what is and is not problematic about comparing to psychopaths. There can be a pretty standard “monstrous criminal” kind of association which is handy for demonizing segments of populations (and when you take the term “psychopath” as “psycho” and “path” it means “mentally pathological”). However if some hedge fund manager can become very efficient at numbers running economical games because they can ruthless crush the numbers and make drastic actions because they disinclude/never include their impact on the lives of others that can be away for a psychopath to exist in a society constructively. In this sense it need not be a prejorative.
I shouldn’t really guess what someone else is meaning but one explanation for higher fraction of LGBQT+ people among autist population vs not that has been raised is that autists are more ready to believe in their own experience and are less sensitive to the kind of cues that would express social shame. The term “gay” used to mean happy and one can imagine that the contrast would be that instead of feeling sad and shamed for their sexual deviancy a person flourishes as something other people want to look down on. For a neurotypical such emotions might be at the core of morality making for a kind of “When in Rome do as the romans do” or “bad is everything that makes the herd attack and abandon you” kind of attitude. Even if this was meant or that I can recall things in that direction “the popularization” seems to have rather critically failed (with the underlying beliefs being hateful a likely mechanism why). It is not surprising for psychiatry as a field to be tempted to view variation and divergence as pathological. In this way this can be a systematic issue as the kind of wrong exhibited might not be selected against but selected for.
In order for the ruthless game to be socially productive the rules around the game need to be robust enough that adverse effects to other systems can be managed. The limits will be tested to the extent that there is constant grinding against them. So all possible states are relevant to be visited in great magnitude.
You need supervisors and referees that independently and actively respond to shady / socially undesired things (or structural limits to the same effect). This is the accommodation this kind of person needs. Otherwise there is going to be constant “This is why we can’t have good things”. The ethics board that is a joykill about canceling a lot of very revealing science experiments.
Concepts previously used in the old parent comment refressed by recent events. The downturn of “drastic actions” is from this perspective a lot more clear.
Thank you. The tail risks of some kind of future discrimination are the thing that most worries me about seeking a formal diagnosis, so the examples of professional bodies which are committing discrimination are very helpful. You’re right that the future is uncertain and British culture could change for the worse, or I might want to emigrate to a country with a different culture. The idea of an unrecorded diagnosis is interesting, but I’m not sure how practical it is. Perhaps I’ll just hang out on autism websites.