Do self-diagnosers ruin it for the rest of us?

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I'm not actually in a position to get a diagnosis. I did the research, read what the problems are from people who have it, took tests, looked at the DSM, etc. If I don't have it, I'd be shocked, I just suffer too much from the exact same symptoms to not have it. And even if I didn't have it, it doesn't stop me having the exact same problems as a diagnosed AS sufferer has.

I can't see how self diagnosis gives people the wrong impression of AS, I've seen not one person who uses AS as an excuse to be lazy. Not one. I personally have only told one person I think I have it (my mother) and she did nothing because she believes that to be Autistic you have to be mentally ret*d. I tell many people that social activities aren't easy for me, but I don't mention Autism. Does that sound like using it as an excuse?

Really, I don't get where the self diagnosis "problem" came from, if anything it's more likely to be more people finding a name for the issues that they have. But I hate being told that I'm using it as an excuse when I genuinely have problems with the symptoms of Autism. I don't have access to somebody capable of diagnosing me and can't help that.

People with official diagnoses aren't always necessarily properly diagnosed either.

Did you mean people who aren't sincere when they say they are autistic? I noticed some parents of autistic children got quite hostile with me when I told them, at a meeting for parents of special needs kids, that I was autistic. They don't seem to like the idea that adults are autistic, I don't understand the hostility...

There are also people in my boat. In order to be diagnosed I have to go talk to a stranger. I don't like talking to most of the people I know. I really don't like talking to people I don't know. No one has yet explained to me what benefit there will be to actually getting a diagnosis that will outweigh the soul searing experience of trying to interact with this stranger.

Amen. I was professionally misdiagnosed with ADD in my mid-20's. The psychiatrist was an expert on female ADD'ers, and had an agenda. Upon doing my own research (and after the medication screwed me up) I came to the conclusion that ADD is not my problem. I have since self-identified as an Aspie. I see no point in getting diagnosed again.

Do I flaunt it? No, just on this forum. I think I've told my mom and that's it. I'm well-adjusted enough and I've worked so hard to cope with an NT world I don't need the world to be prejudiced against me any more than it does already. However, learning more about Asperger's has helped me come to terms with my past failures, and alerted me to some self-destructive or socially-unacceptable things that I had been doing. This knowledge has helped me find coping strategies that work for me. It's also given me hope, knowing that so many other people live with AS and can still lead meaningful and happy lives. I would suspect the majority of self-diagnosers fall into the same category as me. Sure, they want people to understand their "abnormal" behaviour, and sure, they want to feel accepted in a community. I doubt that is equal to "undermining the credibility of blahblahblah".

Now there are always people who abuse something they have. There are certain people with disabilities who use their condition as an excuse for not doing the best they could, or even for scamming others. I've been counselling this girl who has been deliberately rude to everyone and blaming it on her poor English (she's a foreign student). On the positive traits, what about all those people with killer looks who abuse their sex appeal to get favours and such? Anything. You name it, someone's abused it to get sympathy, attention, favours, or worse. It's not just Aspies, clinically diagnosed or not.

Anyone who without proper training and techniques available to make a knowledgeable medical diagnosis is creating a muddle of misinformation about the characteristics of people with AS.

The word diagnosis is derived from two Greek word roots which mean "through knowledge," and guessing, hoping, or believing alone do not constitute a medical diagnosis. Guessing, hoping and believing do suggest the need for a proper medical diagnosis, but care must be taken to find a physician or psychologist who can do the job competently and inexpensively.

The states of the United States must take a more proactive role in diagnosing autism spectrum disorders, especially in adults, perhaps by broadening the skills of the professionals working at county mental health clinics.

If a disorder is diagnosed improperly by an unskilled professional or by a person who believes they have a disorder how can a proper and potentially effective treatment be formulated.

Two things might help undiagnosed people get properly diagnosed:

First, many university medical centers are setting up departments of telemedicine in which all interaction between patients and clinicians takes place over the internet. This method of diagnosis and care while not ideal can be a godsend for the many people out there who want to be diagnosed but aren't.

Second, US citizens can approach their family physician or a psychiatrist at a county mental health clinic at which they have initiated care for a complication of AS like generalized anxiety, obsessions, compulsions, and sleep problems and request that the clinician write out a prescription on their prescription requesting that someone "evaluate for Aspergers Disorder" or "rule out Asperger's Disorder". Then they should take the prescription to the nearest Vocational Rehabilitation office in their state and request job searching assistance for the disability, Asperger's Disorder. Before Vocational Rehabilitation will accept your case they are mandated to verify your disability status and they will immediately schedule a consult at no charge to you with some nearby clinician who is knowledgeable concerning AS. Then you can obtain a photocopy of the diagnosis and use it to seek further services from other agencies or for whatever purpose you have in mind and you can know for certain if your belief is correct or if you are suffering from something else.

Undiagnosed people must obtain a sound medical diagnosis because including them in statistics or opinions concerning AS makes unclear that which should be crystal clear.

Are there really studies or research that includes undiagnosed people? It's hard to imagine any researcher actually doing that. And it's not as if undiagnosed people can force their way into studies somehow. Some cites would be interesting, if there are examples, though. I'd imagine most researchers use "research criteria" which are even more strict than the DSM criteria.

people all over the internet is such a mind-boggling concept it throws the rest of the argument off for me.

people(who?)... all over (how?)... the internet (where?)...

I never knew about this til I came on this site, where there is great moaning and gnashing of teeth sometimes about this.

nobody knows what aspergers is. "crazy" and "ret*d" seem to be the two interpretations people have.

I don't care, really, what NT's think. Or anyone, for that matter. Reductio ad absurdum. or something like that.

I think that all difficulties/disabilitys can and are used for an excuse for not trying.

I had an ex who was diagnosed with depression, he used it as an excuse to be a jerk. He'd give out, scream, swear and seriously insult people and always said after doing this "I don't have to say sorry, I have depression" or "I can act like this because I have depression". Even if he had no control over this, saying sorry would have said to others that he recognised that they didn't deserve to be treated like this.

It wouldn't suprise me if there were Aspies who did this kind of thing aswell to excuse bad behaviours (I'm not talking about people having meltdowns, that's different). When I say bad behaviours, I mean being rude on purpose, with no attempt to be polite. It would only take a very small number of people acting like this to make it bad for the rest of us. As the saying goes "A few bad apples spoil the barrel".

interesting thread.

i appear to have many traits of a person with aspergers . ive always had them but was only diagnosed between 3-5 years ago ( i have rubbish time line skills)

one of the primary things i rember from school , and one day in particular is that i always was an outsider. there was allways the in crowd ( as i assume there is in every school , work place etc)

i was never in it , never tried to get in it , a small part of me wished i was yet on a practical front i had no desire to listen to there in depth conversations about one brand of eyeliner versus another, or which guy looks hotter or what went on last saturday under the war memorial in town ( snogging related usually) .

so from an early age i felt i didnt fit but didnt know why. i rember feeling ( sometimes , always i don't know ) better than them . i felt my thoughts and feelings were deeper , more wordly ( no evidence to support this feeling ) .

a part of me still craved the sharing aspect , the closeness , the ability to be able to relate and to have someone special to relate too.

now i dont think i am better at all, i feel ive lost out, i feel that bond of freinship, support and closeness that other people have will never happen for me .

i was diagnosed with aspergers by a psychiatrist ( i was there because of severe depression and anxiety among other things)

he never put the notes from that consultation into my medical file.

ive seen two psychiatrists since , neither has mentioned the possibility of me having aspergers , the latest one diagnosed me with bipolar.

so i was diagnosed by one dr , does that make me more likely to have it than somone who hasn't been diagnosed ?
what about pre diagnosis ? i hit my 30s before i was diagnosed , and since i dont have it in my file .

would you say im diagnosed or not ?

My thoughts exactly...

I say I am AS... maybe I just mean "on the spectrum" and when I talk about it and my difficulties, I in no way mean to disparage people who have been diagnosed and have more way more challenges then I do.

There are CHARLATANS arousing hatred and spreading disinformation everywhere. I am recently self diagnosed. I'm also in the process of seeking a professional diagnosis. I've already spoken with my psychiatrist and will be seeing my psychologist April 1st, the day after tomorrow. I'm a quiet person but I'm very well liked by my neighbors. I'm a 47 years old women, I have learned how to be social and I'm not giving AS a bad name by using it as a crutch.

Shebakoby, where did you get your information from?

Last edited by Taupey on 30 Mar 2010, 7:28 am, edited 1 time in total.

My 2 cents....

Until competent diagnosis of ADULTS with AS is made widely available and affordable, to put down "self-diagnosing" as a bad thing is hypocritical.

I'm 99% convinced I have AS from what I've learned, but access to an affordable professional who can confirm or refute my beliefs is not available at this time.

The criticism against the practice is akin to telling someone with diabetes who can't afford the medication and regular testing that they don't have diabetes because they read up and try home remedies (diet and exercise) to keep it in check rather than take pills/shots every day.

I'd hold them down for you, no problem.

I hate that attitude. No matter what is wrong with you instead of giving you some understanding people expect you to put the idea of being normal first and just suck it up.

i have been autistic since inception. i was diagnosed as autistic at 6 months old.
autism for me means that i live only in my own world, and i can not situate my conscience in the world of any other person but me.

i see so many posts on this site that are very keenly reciprocative toward what they are replying to, and i wonder how they understand so clearly what the post they are responding to is meaning.

i just see a bunch of words and i do not know what it all means.
it is not because i am intellectually impaired.
it is because i am impaired in a way that i can not see it from the viewpoint of whoever posted it.

to join a conversation for me, is like trying to board a bus that is going 25kmh. if i try to jump onto the platform in that bus i will trip and fall back out.

to be sensitive enough to guage the inherent meaning of another posters words, and then type a multiplexed response that is cogent to that post is impossible for me.

i allow that most people who can communicate successfully do not have the degree of autism that i have, but i can not see where they derive their understanding when they reply successfully to other people to the point where the other person says "exactly!! !"

autism for me is like color blindness to the pastels of emotional meaning that others portray.

i can not in any way see what another person truly feels about what they say, and, if they are not blunt and direct, then i can not even understand what they say.

conversation tinged with emotional color is a string of words that come from a different mindset than what i can perceive.

i can use metaphors because i use them as a literal bridge to describe the link between what i perceive, and how it may not be what is intended by the speakers for me to perceive.

autism for me is very stark and final. there is no seeing color if your eyes do not have the cones. it is inherently organic and not functional.

i am lower in functional ability than most people on this site because i am organically in deficit.

i do not have a deficit of private intelligence, so i can say things that seem cogent, but they do not fit or flow with the current of the dialogue to which i respond.

i do not identify with anyone here, but that does not mean i think no one here is autistic.
it means that i can not identify with anyone including people like myself.

i think on a low level

I think my issue is not with the perception of others, but people getting it wrong. I know two females, both of which I have known most of my life. Both suddenly think they have Aspergers after I was diagnosed. Both were socially adept, fashionable, and showed no signs as children. I really think many people do misunderstand what AS truly is, and then assume they have it.

On the other hand, I know there are people who most certainly have AS, and were never diagnosed.

I think a lot of people think less of AS as a condition because of all the self-diagnoses out there. The more people out there that are self-diagnosing themselves, the more that NT's see it as making an excuse for being anti-social, weird, etc...

So yes, I do think self-diagnosers ruin it for the rest of us. It's not their fault, though - it's how others (NT's) look at AS.