Self-Diagnosis

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I meant to add, that this extends to other medical conditions too. I knew I had endometriosis, 10 years before I finally got a diagnosis. I had all the signs and symptoms, but the exploratory op showed nothing. Then I had another several years later, different doctor, different hospital and they found it (the other doc obviously didn't look hard enough). Of course, I didn't tell anyone I had it until it was finally diagnosed, but that didn't make the illness any less real. In fact, it was a lot worse before, because I thought I must be going mad, if they couldn't find a cause.

I don't understand why people get in such a snit about self diagnosis. Many who do have researched the subject more than the average practitioner. I've heard and heard about a lot of ignorance from professionals. For instance, "You can't have AS because you used the phone to make an appointment", or " You have a job and you're married" etc. Self diagnosis does not take away services from the professionally diagnosed either.

I was professionally diagnosed with Asperger's. But I respect those who say they have Asperger's based on a self-diagnosis. Who am I to judge? The WrongPlanet doesn't require a professional diagnosis. That's why there are options on the profiles for official diagnosis, self-diagnosis, NT, etc.

This is exactly what I heard too from the tester...I am married (2nd marriage), & I held exactly one job for 6 years. So I can't have Aspergers. It's true, but I was also involved with lots of abusive relationships & most of the jobs I have had lasted all of a few days to a couple of months to maybe a year. So how do I explain my working track record? So how is it that I held one job for 6 years & was bullied for all 6 by co-workers & a boss that makes it that I can't possibly have AS? I'd love to know WHAT it IS if it's not AS. The person who did the testing only works with kids....she doesn't normally deal with adults, especially one who is middle aged. I have an appt this week with my shrink. I am bringing along another list along with materials that I have used to come up with the AS assessment (online tests, etc). I didn't just wake up last week & decide this is something I so want to have because I want an Aspergers social life. Gimme a break! I was looking for a DX so I could figure out a way of working & getting some accommodations to work around some very severe sensory issues that seems to have only gotten worse not better as I have gotten older. So I guess I am now a self-describe FREAK since I can not get a proper DX. I know I am not BP. I'd have found that out 10 years ago, since I've gone through extensive testing. I do know I have depression & depending on the day, it can be mild or severe. I also have anxiety, I've known that since I was a kid. Oh wait....but that's self-DX'd too...so I can't possibly have those issues either. Really? Oh I know I have Mary the Monster syndrome...since I'm such a freak, there is no DX for someone like me...only that I am a freak & no one wants me around anywhere.

I also love that a 21 year old can tell me what I don't have....as if that person has had all the life experiences I've gone through in more than 49 years. I'd love to hear his/er explanation of why I have been bullied/abused by pretty much everyone across the board, lack of friends, hyperlexic starting at 3 years old, tops in all classes for reading/spelling/art, bottom of class for all other subjects including math, lack of appropriate social skills (this still affects me as I cannot read/understand others), have had deep special interests including Star Trek (not a typical girl interest...or so I am told), Lack of ability or understanding of normal girly activities, etc. So what is this??? Please enlighten me if it's not AS? What the Hell is it? I have been doing research since 2006 on Aspergers because that's when my oldest kid was DXd with it. All I am looking for is peace of mind...so far I have not found it.

Why should it be so hard for someone to be diagnosed with an ASD? It should be just as easy as it is to get diagnosed with anything else, from insomnia to depression. It's ridiculous that someone should have to pay an arm and a leg just to find out what they have only because it's an ASD. That's extortion, nearly, and it's proof that people are still ignorant about what ASDs are.

Well would it be better if I just told people I'm a total freak, or let them assume I am a psychopath......cause the weird quiet person who wears black must be a psychopath. Sorry some of us cannot afford to get a psychological assesment and diagnoses, I'll keep that in mind next time I think about mentioning it is very likely I have AS but am still looking to be officially diagnosed.

I am one of those self diagnosed people who feels I do have a lot of issues, hence the reason of suspecting that I have As and other mental conditions...since I have the symptoms. I see your point with people claiming to have AS but that it causes no difficulties in their lives.......that can be annoying especially when they attack others for talking about their AS related problems. But I do not think self diagnoses in general is all that bad that is all some people really have access to.

I had a assessment last week and apparently i have symptoms of asperger's syndrome but, because I want friends i can't have it so he is unsure so I am being referred to a specialist. Which has to be approved for funding so I could end up in a limbo situation of yes and no. Getting a official diagnosis is important for me as I want to do better at university and not drop out again. If it wasn't for this I'm not sure if I would seek a official diagnosis because it has been a hassle getting anyone to listen to me.

I thought that was one of the core issues with Aspergers: wanting friends, but not knowing how to get or keep them.

This seems to be another issue of people who can "officially" DX a patient: most of them don't even know all the complexities of Aspergers/Autism. They only seem to understand bits & pieces....as if they are only able to see certain symptoms as being a positive indicator of a DX, while others are completely dismissed. One will give one DX, & another will come up with something completely different. If all the psychiatrists/psychologists can't even get on the same page, then how are people supposed to understand what AS/autism is?

I thought that was one of the core issues with Aspergers: wanting friends, but not knowing how to get or keep them.

This seems to be another issue of people who can "officially" DX a patient: most of them don't even know all the complexities of Aspergers/Autism. They only seem to understand bits & pieces....as if they are only able to see certain symptoms as being a positive indicator of a DX, while others are completely dismissed. One will give one DX, & another will come up with something completely different. If all the psychiatrists/psychologists can't even get on the same page, then how are people supposed to understand what AS/autism is?[/quote]

Exactly what I thought. I am a introvert but you know what I would like to share a new joke I made with someone time to time.
I'm just glad I am being referred to a specialist but if I get denied funding I'm going to have to contact the autism charity I have talked to in the past to get help.

When I told my Doctor that I think I have AS he looked at me like I had grown two heads. Professionals seriously need to be taught about it.

Or they have another motive entirely.

I'm all in favour of people self-diagnosing, so long as they're honest with themselves and careful, which seems to have been the case for most people I've seen here.

Thank you.



How do you feel about people like Temple Grandin and Paul Dirac being representatives of AS? They make it hard for AS to be taken seriously as a disability.

My main concerns with a Self-DX are that: (1) the person's self-DX will be completely wrong, and they will try to self-medicate accordingly and do even more harm to themselves; and (2) the person's self-DX may actually be right, and they will try to self-medicate incorrectly and do even more harm to themselves.

Thus, my concern is more for the person making the self-DX than for any other factor. It's like my cousin, who thought she had "only a cold" that wouldn't go away, treated herself with the appropriate OTC medications, and died a year later from some kind of mycoplasmic/"Toxic Mold" lung infection that could have been cured if she had gone to a doctor and obtained a correct diagnosis.

So please, don't be a statistic; if you can obtain a real diagnosis, then get one.

http://en.wikipedia.org/wiki/Confirmation_bias

Also, if they agree with your diagnosis, nothing changes. But if maybe multiple professionals disagree, you would have to think about your self-perception, image of yourself and so on (or discard them all as idiots...). You kinda avoid these situations. I remember when I was diagnosed, I actually wanted them to disagree with my AS-suspicion. I was like "show me that I'm wrong", didn't want the label at all.
But maybe that's a matter of attitude towards AS. Can only speak for myself though. And a self-diagnosis wasn't enough for me. I'd rather have a psychologist tell me don't have it at all, further confusing me about my place in the world, than following an idea only based on internet-articles and self-perception( which is impaired by AS ironically thus making professional help even more necessary).
No offense, just my two cent...

Last edited by mango_prom on 27 Sep 2011, 3:26 pm, edited 1 time in total.

Are they making statements about Asperger's Syndrome that are false? I'm discussing having dealt with people who under no definition of Asperger's Syndrome had it, discussing traits that had nothing to do with AS and passing them off as AS, while removing other traits that did have to do with AS.

This absolutely doesn't happen with everyone self-diagnosed. In fact anyone I'd consider self-diagnosed rather than "self-diagnosed" (the former did research and related to it, the latter took one or two quizzes and actually didn't know what they were discussing), tends to only pass things off falsely at the same rate as people who have been officially diagnosed (which occurs as well). The problem is that it takes more than just whether someone is officially diagnosed or not to determine how much someone has actually studied the topic or identified with something that actually has entirely different symptoms than what they have.

I've dealt with this too much to be able to say that I'm sure that people who self-diagnose are right. I'm sure that it doesn't matter to me unless they do things that harm me, and that it can help them, and that a large number of them are right. I'm sure that both us and them have benefits from them interacting in the community. However, when someone, whether self-diagnosed or not, does something that harms me or people I am close to, this I will have problems with. The rate of this particular problem is much higher in my experience in people who have applied the label of Asperger's to themselves without anyone else giving another perspective and without having done sufficient research.

I wonder if this is influenced by the availability of state healthcare?

I live in the UK and have never heard of people self medicating for anything. Not that I talk to many people of course. No doubt it happens, but when doctors are free and prescriptions are free (Scotland) or highly subsidised (England), doctors are more likely to err on the side of medicating more, because it saves them money. A typical scenario here is:

1. feel slightly odd ->
2. pop to the doctor ->
3. doctor gives something very mild and says 'come back if it gets worse' ->
4. everyone is happy.

Also, with a welfare state, if you get a diagnosis it makes getting benefits easier. Delays are an issue, but if you're self diagnosing then chances are you've lived with it for many years anyway, so another six months is not big deal.

But I imagine the situation is very different in the USA. I hear scare stories about the amount of money doctors take from you - I mean no offence to my friends across the pond, but your system is seriously broken, and as far as I can see the Obama changes have been heavily diluted and loaded with pork. If I lived in the USA, had no money for a doctor, was constantly bombarded with medical TV ads, and was afraid that an official diagnosis meant career suicide, I would probably self-medicate too.

Yes our system is broken.