why are self-diagnosed aspies considered "posers?"

Post Reply New Topic

People can't "officially" self-diagnose because they're not trained to know the difference between small variances in different disorders.
You're not a doctor. You haven't studied medicine. You can't perform surgery on yourself or give yourself an accurate CAT-scan. Obviously, you don't need the CAT-scan with Asperger's, as Aspie-ness is more about symptoms and traits.

With Asperger's, people read a checklist and think they have it. Many are right, some aren't. Same with people who have depression. People tend to know they're depressed or have the symptoms, but people can't necessarily distinguish SAD vs. depression or the causes.

Many people try to google their symptoms of various illnesses, but don't have the medical knowledge to know the cause of the symptoms.
For example, a round, red face could mean a sunburn, or it could mean Cushing's Syndrome. Obviously, since you're not an M.D., you can't accurately diagnose every illness you may face. Aspie, yes. Most other illnesses, no.

People self-diagnose all the time, but for some reason there's never any community drama over "I have a migraine" or "I caught the flu" or "My allergies are acting up".

Knowing yourself is more valuable than any "official" diagnosis, I believe. No matter how good a doctor is, he would never be able to see and experience the world the way I do.

I am 100% confident in my self-assessment. My research was thorough. I examined all possibilities. I compared all available info to my own experiences since early childhood up until nowadays. Therefore, I have no doubts that my conclusion is correct. Being diagnosed won't change anything, at least for me.

Besides, I don't perceive AS as an illness or a defect. I don't believe it's something that has to be cured or corrected in any way. It's just the way I am. And I accept it

To be overly pedantic, I have seen community drama over "I have a migraine". (and been part of some, but when they gave their symptoms and the symptoms matched tension headaches instead of migraines, its unlikely to be a migraine)



This is the sentence that bothers me. There are certainly reasons people self-diagnose. I'd be confident that a majority of those people are right (not all, but certainly a majority I'd be confident about). I'm not against self-diagnosis, though I am overly precise about language in a way that will offend some people on here.

However, if there's no upside to getting the diagnosis, why do you think that you have a disorder? If you don't have the means, financially, because of biases in the area, or for some other reason, there are reasons to not get a diagnosis, but that does not mean there wouldn't be upsides to getting that diagnosis. The cost of getting the diagnosis isn't always worth the benefits, but the benefits are never nil if you have a disorder. The point of the diagnosis is to explain to you what's different about you and to open up possible avenues for help. If you don't need help, or potentially in the future need help, in any of those manners, then why do you think its a disorder and not a personality trait or otherwise subclinical?

I admit I am young, however my diagnosis has given me a huge amount of help, and some, though not all, would have been just as relevant if I was diagnosed decades later. Some of this help will be just about life-long.

I might just be being too pedantic here, but there's a huge difference between "are the costs worth the benefits" and "there are no benefits". The costs might not be worth the benefits of getting the official diagnosis (though I feel people actually underestimate those benefits often), but there are always benefits. If nothing else, the evaluation report is a huge benefit.

You're right the benefits are never nil, but depending on what benefits a person is looking for they might not be worth the effort. For me, the cost of a diagnosis is certainly not an issue. It's the effort required and my mistrust of psychologists don't outweigh the potential benefits of diagnosis. The benefits were finding out why I was different and how to react to that. I feel like I was spending my life trying to fit into what was healthy and normal for an NT and that's no longer the only model I have to go by. I can think about what's normal and healthy for me. No more trying to foce myself into social sitautions, no more beating myself up because I can't understand what people are saying and I don't know what to say back Also it's brought greater self understanding and self acceptance where before I reacted to alot of my traits, things like pacing and rocking with shame. I can take joy in my 'obessions/interests' rather than seeing it as a bad thing to be so drawn into something.

That being said, I think I am taking a more dangerous approach this way, because if I'm wrong about the self-diagnosis then I've screwed myself by going by what is normal and healthy for an Aspie when I should be trying to go by what's normal and healthy for an NT or perhaps someone with another DSM condition. Then again, I don't trust psychologists, and I think there's a subjective portion to psychology that makes me unsure of it.

I am not a psychatrist, but I have noticed in my profession, the professionals often take a very dismissive view of what their clients say and often of the clients themselves. I don't know how different the psychiatric profession is. I'm also afraid of misdiagnosis followed perhaps by being put on dangerous prescription meds. I know there is concern about the entanglement of drug companies in the profession. More than finding a psychiatrist there is finding a good psychiatrist. This seems like it would be challenging considering I don't know much about the psychiatric profession and it's hard to get good inside info. on professionals. I find in my profession, the professionals are very reluctant to criticize one another even for excruciatingly horrible work and bad professionals may sometimes be considered good because they have the right personality and manage to convince their clients they've been working hard on their file. Conversely, good professionals may sometimes be considered bad because they lack the personality. For now it seems as if the potential risks of a psych evaluation do not outweigh the benefits. I am suspicious of expertise and the reliance we put on experts. I think experts are often not working in their clients best interests but rather in their own best interest. I can attest to the overbilling, and the half-hearted dedication to cleint interest that happens in my profession. I think with the availability of info today with technologies like the internet, the relative importance of experts in society will continue to diminish.

...

Last edited by SpiritBlooms on 09 Jul 2012, 7:06 pm, edited 1 time in total.

I agree with not bothering to get a diagnosis when there isn't a benefit to be gained, but it being potentially detrimental. Many threads on this site have listed cons associated with getting a diagnosis if you can live a relatively normal life. I don't see any benefit in my case. It's not as if an agency is going to see that I function well enough in the professional world, but flounder spectacularly socially. An agency isn't going to give me a gift certificate to visit a hooker or brothel once a month if I get diagnosed. My insurance company may raise my rates (raise my employer's rates and they see who ends up costing them more), my boss might think I am less capable than I am, the government may start considering aspies as threats and it would be in the public interest to limit the rights of those diagnosed. Those are all negative consequences.

If a diagnosis could be completely private it could be a good thing.

I do need help but I don't think there is any help to be had and don't trust psychiatrists/psychologists. I went to them as a teenager and they never did anything for me.

The only help I could see it giving me is if I was able to get on ssi for it.

Why do I think I have this disorder? everything fits, including the problems I've had all my life, the way I look at things, and what seems to help. And the more I learn about Autism, the more everything fits. Even though I have managed to build a life for myself, I still have these problems, and remedies used by Aspies and Auties help greatly. . . . Have I mentioned how much I just love my weighted blanket? I'm still brainstorming designs for an adult-sized sit 'n spin.

Why is there no upside to an official diagnosis for me? Aside from the expense, which I could cover if motivated, even finding a professional who could diagnose an older woman would be difficult. Once diagnosed, there are no applicable support groups around here, and everything else is for the children only. If I need help for the symptoms, like stress, or anxiety, I could go to the doctor for that alone. I have so little respect for medical authorities in general that having one or more of them agree with me would not increase my certainty, nor would having one or more disagree with me decrease my certainty.

If I find a professional who can take my gender and advancing years into account, I'll probably go for it. Same goes for if they come up with a treatment that might help me that requires a diagnosis to obtain. I'm pretty much planning to target a diagnosis after I retire if only to stand up and be counted.

In the meantime, I'm serious as the proverbial heart attack when I say that imho, mindfulness training and acting lessons would be a better investment of my money than seeking an official diagnosis.

What I'm saying is that there are upsides for every one of you who just responded to me. It's just that those upsides aren't worth the monetary, societal, time, and other costs, in your views and values. This is not the same as their being no upsides. It is also not the same as saying that everyone should drop everything and get diagnosed at this moment.

There are benefits that you're giving up by choosing to stay undiagnosed. What those benefits are varies from person to person. The costs and benefits of diagnosis are not even throughout everyone. But it bothers me a huge amount to have people say that they are not giving up anything. It's just that they are choosing what is best for them, which might not be best for someone else.

Through high school and college my parents thought it was best to not deal with the monetary cost and hassle of getting me diagnosed. I'm not sure if this was the right decision, but it worked out acceptably anyways. After I finished college it was no longer acceptable for me to not be diagnosed. We tried to get insurance to cover the diagnosis and when they denied saying they didn't think it was necessary my parents paid out of pocket because it was without question that important. The cost/benefit ratio changed drastically between when the idea of me being autistic came up and when I was diagnosed. But we were giving up things when I wasn't getting diagnosed early on, just as we gave up $1600 when I ended up getting diagnosed.

I myself am not really certain if I have it or not. Plenty of the life experiences and thought patterns I have had seem to match those of people with AS. Most of the online tests I have taken seem to indicate that I am either AS or on the borderline of the disorder. That being said, I don't usually identify myself on here as definitely having the disorder and note that I may not in my signature. Would I like a formal diagnosis? Sure, but I doubt it would change much in my life. I am nearly 40 and my parents are in their 60's and for me or my parents to remember enough detail about my childhood to get a proper diagnosis at this point would be difficult. I could very well have it and not be diagnosed because of this or because of how I have adapted and learned to deal with people over the years. It could also be that some of the things I do or think that look like AS were defense mechanisms I developed to deal with life that seemed like a good idea at the time. It's almost impossible to separate affect from effect, nature from nurture at this point in life. The thing is though, I don't think it matters because what I need now is to figure out how to go on with life more successfully. All I am doing here is sharing experiences with others whose experiences are similar and who also are trying to figure things out. Since it is always going to be about coping mechanisms, places like this are a good fit, whether you have an official diagnosis or not. So long as I am still welcome to be here, I will stay and try to work on my own issues while hopefully helping others to deal with theirs.

Last edited by outofplace on 05 Jul 2012, 2:34 pm, edited 1 time in total.

Fair enough.

Its not. I don't understand these topics. So what if someone wants to fake having a disorder, it'll do more harm than good. No one knows what goes on in each poster's personal life. A big problem with the internet is that we're not forced to deal with a person face to face. People make friends with people online and think they know them but really don't. I think with ASD and aspergers its really something where you have to see the person and how they act and react. It really doesn't matter either way.

Because self diagnosed people are not medical professionals and AS was not meant to be self diagnosed.

Here's another way to see it... maybe... what's the point of getting diagnosed if other medical professionals deny it? I've had second, third and fourth opinions on the matter and only 3 of the four agree. And 2 of those four suggest I get tested at a specialty clinic "just to make sure" that will cost about $2,000 since my insurance won't cover it. My insurance covered the testing I had that led the clinical psychologist to diagnose me, why is that diagnosis challenged by my other doctors?

So even with a diagnosis, you are still subject to people not a) believing you, b) supporting you, c) understanding you, and d) accommodating you. With this in mind, I think it only does the individual good for peace of mind ultimately that will lead to acceptance and betterment. Further I can't imagine anyone faking something as severe as autism.... how the heck is it "cool" to be socially awkward, freak out over your senses, rigidity that drives people away.... what are the upsides? Very rare savant skills? Concrete thinking? ("I"m cool, I have autism") just doesn't sound as appealing... actually I think making light of serious things for one's own benefit is something beyond my understanding anyways.

I'm self-diagnosed and I don't care if people call me a poseur. I grew up when AS was just becoming popular and even then it was mostly only diagnosed in boys. I know that I have AS and trust me I didn't accept the fact at first but the more I learned about it, the more I saw my true self. The only doubts of me having AS was that I find that most people with AS are extremely intelligent and I don't see that in myself but over the years I've learned enough about it to say that I'm 99% sure that I have it. I mean, I have trouble with my emotions, I have horrible motor skills, I stim and I have obsessions. Not to mention that my stimming is extremely weird and unique.

I'm talking to my psychiatrist about a diagnosis next week and honestly I don't care what people think about me as a self-diagnosed aspie because they should start worrying about themselves and start accepting people as individuals. Trust me, I've never wanted to be an aspie, I just know that I'm 99% likely to have it.

Saying all this, I've found that the majority of people on WP are very open-minded individuals who usually don't judge on whether you're self-diagnosed or not. I have to say that most people on this website are amazing. I mean, we all have similarities or we wouldn't be here, right?