"It seems really random..."
I don't think it was meant to be harsh; I think it was honesty meant to help. I know someone who was SO CERTAIN what he had was Aspergers. He told EVERYONE he could. He was definitely not ashamed of saying it. He could have sworn he completely identified with it. Several months later he had an assessment and was told he did not have it. He was given another diagnosis, and his psychologist explained why this diagnosis fit him when the Aspergers label didn't. They were different labels, but both had some similar symptoms. With the explanations from his doctor, he understood why the real diagnosis fit him more, and completely embraced that one instead. There are a lot of people out there who are CERTAIN they have it, but they really do not.
An official diagnosis will make people take you more seriously. And on top of that, when you claim to be on the spectrum, you are representing people on the spectrum. People will base their opinions on the rest of us based on how you (or whoever else they might know) behaves. If you (or whoever else) is not on the spectrum, then their opinions of people really on the spectrum are tainted. Those opinions are based on something that isn't real--as a result, they can be MISLEADING (aka. harmful). It is not a harsh thing to say, but a realistic thing to say.
If you AND your doctor have identified it, then it is very possible. While you are waiting for your official diagnosis, I don't see any harm in saying that you SUSPECT you are on the spectrum, as the person before me mentioned.
_________________
Diagnosed with classic Autism
AQ score= 48
PDD assessment score= 170 (severe PDD)
EQ=8 SQ=93 (Extreme Systemizer)
Alexithymia Quiz=164/185 (high)
I do think people should really be sure, but I can't decide whether or not they're sure. In my case, I'd started talking to people, and several told me either "I thought you were" or "that makes sense." The people who told me they didn't think it could be true had reasons that didn't actually make sense (mostly that I wasn't like autistic children that they'd known, or used too much sarcasm and too many idioms, or bantered).
I do think people should really be sure before they say it, and I do think people should do what feels correct to them. I do not believe there is 100% certainty ever, and I think no one knows you better than you know yourself, so it's pretty much a judgment call. The big deal here is picking the wrong thing and thus assuming that there's no treatment for you (say having ADHD and thinking you are autistic - ADHD treatment can be very effective), thus not getting treatment. Seeing a professional may still be a good idea even if you can't get or afford one to evaluate you for AS.
Also, the thing that makes it difficult for me to agree with "You should not say it unless you have been officially diagnosed" is that it creates stratification, and in the US that stratification may mostly be along economic lines, as diagnosis may be inaccessible for people who can't get access to medical care. I think that if most self-diagnosed people with AS are accurate about their self-diagnosis - as Attwood says, and I think I saw someone once say Baron-Cohen also said something similar - then it is perhaps better to go with all of the people who could benefit from claiming the label for themselves and understanding themselves better than focus on the possibility of harm if a few people misdiagnose themselves.
I sort of understand your last paragraph, but not exactly. I'm sorry.
I don't have ADHD, though. The testing for ADHD is what led to the testing for AS.
_________________
What, were you expecting a witty quote or something?
I don't think it was meant to be harsh; I think it was honesty meant to help. I know someone who was SO CERTAIN what he had was Aspergers. He told EVERYONE he could. He was definitely not ashamed of saying it. He could have sworn he completely identified with it. Several months later he had an assessment and was told he did not have it. He was given another diagnosis, and his psychologist explained why this diagnosis fit him when the Aspergers label didn't. They were different labels, but both had some similar symptoms. With the explanations from his doctor, he understood why the real diagnosis fit him more, and completely embraced that one instead. There are a lot of people out there who are CERTAIN they have it, but they really do not.
An official diagnosis will make people take you more seriously. And on top of that, when you claim to be on the spectrum, you are representing people on the spectrum. People will base their opinions on the rest of us based on how you (or whoever else they might know) behaves. If you (or whoever else) is not on the spectrum, then their opinions of people really on the spectrum are tainted. Those opinions are based on something that isn't real--as a result, they can be MISLEADING (aka. harmful). It is not a harsh thing to say, but a realistic thing to say.
If you AND your doctor have identified it, then it is very possible. While you are waiting for your official diagnosis, I don't see any harm in saying that you SUSPECT you are on the spectrum, as the person before me mentioned.
That comment I left was about the whole someone without AS marrying/having a baby with someone who does have AS. I understood where he was going from, but it merely felt as if he were saying that it would be horrible for a "normal" person and a person with AS to do that. .-.
_________________
What, were you expecting a witty quote or something?
Verdandi
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I don't have ADHD, though. The testing for ADHD is what led to the testing for AS.
I mean that if you say you are required to have a diagnosis to say you're autistic, then you have stratified tiers: People who have been diagnosed, people who can't afford to access diagnosis but need it, and people who do not wish to access diagnosis and may or may not need it.
Is it really appropriate to say that one's ability to identify their lifelong difficulties should be dependent upon their pocketbook, or their insurance, or in the UK if they got lucky in the postcode lottery? Or equivalent barriers in other countries? Is it really appropriate to say someone can only be genuinely autistic if a medical professional confirms it?
I don't have ADHD, though. The testing for ADHD is what led to the testing for AS.
I mean that if you say you are required to have a diagnosis to say you're autistic, then you have stratified tiers: People who have been diagnosed, people who can't afford to access diagnosis but need it, and people who do not wish to access diagnosis and may or may not need it.
Is it really appropriate to say that one's ability to identify their lifelong difficulties should be dependent upon their pocketbook, or their insurance, or in the UK if they got lucky in the postcode lottery? Or equivalent barriers in other countries? Is it really appropriate to say someone can only be genuinely autistic if a medical professional confirms it?
It's that magical piece of paper at work again... doctor signs paper and 'POOF' you are NOW officially ASD...like magic...
I am also a blogger. I would just say that "I'm quirky" or something like that. It's hard enough to get some people to take blogging seriously without them trying to figure people out. It seems like it would be a hindrance unless it was an autism related blog. I have been told in my comments that I wasn't explaining things enough and people who didn't know everything that I was referencing wouldn't catch it. At first I didn't have any interest in changing my writing style. However I now write abut certain topics in certain ways because I want as many people as possible to benefit from what I'm sharing.
Sorry if it came across as trying to be harsh, I just meant to point out one of the hidden dangers.
I also forgot that outside the uk you need insurance to get anything diagnosed, if it is for financial reasons I'd be ok as long as it was made very clear in any post or discussion that you are self diagnosed.
As for saying that most people who self diagnose are correct, you must remember that there is going to be a significant sample bias here, in truth it's something like most people who self diagnose, and then seek a diagnosis are correct, as a large number of self diagnosed people will never be tested to be included in the statistic.
Simply put it's because as far as I am aware there has been no formal studies on the validity of self-diagnosis, so the odds are that it is merely an observation based on the experiences of Tony Attwood, and his colleagues.
So in reality it the quote should be most people who are self diagnosed, and then seek diagnosis are correct, rather than most people who are self diagnosed are correct.
I'm not disputing it as much as saying that it isn't solid enough evidence to verify a self diagnosis.
I do believe that the majority of people who self diagnose will be correct, but at the same time I think that there is a large
enough risk of wrong self diagnosis that it is worth seeking a professional opinion, partly as there is some overlap
in symptoms between Aspergers and other disorders.
Verdandi
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So in reality it the quote should be most people who are self diagnosed, and then seek diagnosis are correct, rather than most people who are self diagnosed are correct.
It is possible to extrapolate from existing data. If a majority of clients who self-diagnose before seeking official diagnosis are correct, then it is not that much of a stretch to conclude that a lot of people who self-diagnose without seeking an official diagnosis are very likely correct.
I guess I do not understand why anyone needs to display this much burden of proof to anyone else?
enough risk of wrong self diagnosis that it is worth seeking a professional opinion, partly as there is some overlap
in symptoms between Aspergers and other disorders.
Is there a way to propose this reasonably while acknowledging:
* The economic difficulty of getting a diagnosis
* The difficulty adults have getting a diagnosis
* Dealing with stereotypes about autism that many professionals espouse
* Professional opinions that do state that self-diagnoses are likely to be correct
* People tend to know themselves best
As far as it goes, I do agree people should be open about having self-diagnosed.
If you are in the process of getting a diagnosis you should probably wait for it.
Personally, I have no intention of getting a diagnosis as I don't see any benefit to me. I've only told a couple of people and when I do I only say "I believe ..." not that it's a fact - even though there's no doubt in my mind.
I don't think it is easy to extrapolate as you have 2 different data sets, people who self diagnose and seek diagnosis, and people who just self diagnosed, but only the first set is being commented on, without a proper study on this (which may be useful) it lacks evidence.
I think the reason that many self diagnosis are correct is because aspergers is a relatively new diagnosis still, and is a developmental disorder, so
the only way to get a diagnosis for many adults, is to acknowledge that you may have it.
I don't dispute a persons right to self diagnose, but the burden of proof is yours should you choose to speak about it, as once you speak about it, it is inevitable that people will listen, some of those people may also be in the process of self diagnosing, so i think for informational purposes it is the individuals responsibility to make sure that it is clear that they are self diagnosed to avoid "watering down" the criteria that people self diagnose on.
I too went through the process of self diagnosis, the difference is, is that I waited 3 years, until I had a diagnosis, to actually speak about it, this didn't stop me from reading about aspergers and applying what I'd learnt to myself.
Again I forgot about other difficulties in getting a diagnosis, the issue is clearly not a simple one, I think ultimately I would just like to see people clarify if they are self diagnosed, or officially diagnosed as aspergers is a disorder, not a personality type.
This can only go so far. People know themselves yes; however, the average person does not have training in psychology. Many people who are self-diagnosed know of a handful of disorders and have come to identify themselves with the autism spectrum from the disorders they know about. In reality, there are many disorders out there that could be mistaken for the autism spectrum but are still not part of the spectrum. A psychologist--while some have made wrong diagnoses before--still knows more about the variety of disorders out there than the average self-diagnosed individual and may find something that individual has not yet explored. It could be that, for the average self-diagnosed person, out of the disorders they KNOW about, the autism spectrum seems closest to their issues. It does not mean that in every case autism IS the reason for their issues, it just means they have no found another disorder that quite as closely matches what their issues are. I do think many self-diagnosed people will have it, but just because they think they do does not mean that none of them will be wrong for this precise reason.
_________________
Diagnosed with classic Autism
AQ score= 48
PDD assessment score= 170 (severe PDD)
EQ=8 SQ=93 (Extreme Systemizer)
Alexithymia Quiz=164/185 (high)
Verdandi
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Well, do you think that the risk of being wrong is unacceptable or bad?
The thing is that I have seen people who self-diagnosed later change their minds, and say "I think this is better accounted for with this other thing that makes more sense to me." And what I have seen happen is that other people in those particular communities basically said "That's fine." and I've never seen any expressed hard feelings.
The other thing is, as a community instead of warning people off, we can actually help - I know there are several conditions that can have similar outward symptoms (avoidant, schizotypal and schizoid PD, schizophrenia, complex PTSD, depression, ADHD, social anxiety...just to name a few), and I know there are likely others. Would it be worse to put together a list of conditions that can be mistaken for autistic spectrum disorders than it would be to caution people that they can't possibly know all of these things?
When I was researching whether or not I could be autistic, I looked up most of the above and read accounts by people who had them to see if I had those as well. I read about them as extensively as I could. The thing is that no matter what I did, the only people who described thinking in a manner that was familiar to me were other autistic people. Even if I feel I fit some of the criteria for schizoid personality disorder, there are a lot of things it simply does not explain.
I guess my experience is that a large number of people I have encountered online tend to be fairly proactive, educated about their conditions, frequently self-diagnosed before seeing someone, and had their self-diagnoses professionally confirmed (for what it's worth, I've had every single self-diagnosis I have ever made professionally confirmed). I don't just mean autistic spectrum disorders, but a variety of conditions physical, psychological, and neurological. To me, the possibility of being wrong is something that we all risk whenever we make a decision or get into an argument. I think anyone who self-diagnoses should be aware of that possibility and take responsibility for it, but I do not think it is necessary to decide who gets to call themselves properly autistic on the basis of a piece of paper that can cost hundreds or thousands of dollars to obtain.
I tried to say something like this in my post - I agree completely. I think people should be clear that they are self-diagnosed and not present themselves as if they are officially diagnosed. I do not think there is a problem if they say they are autistic, but they should be honest about how that label came about.
There was a point probably two or three months before my diagnosis where I felt like saying "I think I might be autistic" was equivocating far too much. I already knew the answer, and that answer was reflected back to me by numerous people online and off. But I was open about the fact that I was not officially diagnosed.
AardvarkGoodSwimmer
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I like this!
And a good doctor does not want to hold a monopoloy on truth or information or anything like that. I mean, it is not a priesthood. And let's give ourselves some credit. Taking our time, looking at things in different ways, using a variety of sources, we might be able to understand things pretty well. I mean, if we can understand things from a science documentary about the transition from prokaryotic to eukaryotic cells or the 'Fermi Paradox,' yes, we might be able to understand about autism spectrum. And obviously, I think we can.
My response to this would be a repitition of a couple of my previous posts. I do not feel like repeating it.
I never implied that this was the problem. I certainly do not have any hard feelings toward people that are mistaken. Looks like I do have to repititive: I said it is more about going around saying you definitely are autistic when, although you might feel certain you still do not know for sure, you might not be, representing a people that you might not have the right to represent. Then if you are given a different diagnosis, you've portrayed the people incorrectly and have given false impressions to other people who are already ignorant enough. THAT is the problem, IMO.
Just because I said a self-diagnosed person should say something like, "I SUSPECT I have autism" rather than "I know for sure I definitely have autism", does not mean I am "warning people off". I have never told any self-diagnosed person that they were not welcome or wanted. Whether or not their feelings are hurt because I think they should only say they suspect autism until it is confirmed, is beyond my control. That won't make me change my opinion. I still value their input and welcome their presence.
And you were proven to be correct. There are other people who say this and they are proven to be incorrect, and ultimately agree with this decision.
Funny...I implied the same sort of thing, but you disagreed with me.
_________________
Diagnosed with classic Autism
AQ score= 48
PDD assessment score= 170 (severe PDD)
EQ=8 SQ=93 (Extreme Systemizer)
Alexithymia Quiz=164/185 (high)
And yet I still know very intelligent people who did the research, were "certain" they had it, and then were diagnosed with something else instead. Average people might not know as much as they think. Sometimes psychologists get it wrong yes, but it is also true that sometimes self-diagnosed people also get it wrong as well!
_________________
Diagnosed with classic Autism
AQ score= 48
PDD assessment score= 170 (severe PDD)
EQ=8 SQ=93 (Extreme Systemizer)
Alexithymia Quiz=164/185 (high)
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