Self Diagnosis; Why the Controversy?

[toothless]

Dear Tumblr
^i found this post while searching for autism blogs and it was quite thought provoking for me although i didnt agree with it.

the writer thinks its a bad idea to self diagnose with anything including autism and is quite ranty and certain about it, aparently shes a pyschology student from what i can make out- typically many of them think theyre qualified shrinks when they become a student of the profession.

do you think self diagnosis of autism is wrong and causes trouble for people who diagnosed? i dont agree with her.
people who are autistic but undiagnosed are usually good researchers and have the logical mind to detatch themselves from the traits and difficulties in order to self diagnose,so i take people who self diagnose with autism in the same way i take people diagnosed,ive only come across one person in the 15 odd years of being in the online autism and disability community; who had self diagnosed and ended up diagnosed with something else that i cant remember,however he related to the ASD traits greatly so he should have stayed as it helped him;and he could still have been autistic anyway as he had the 'female presentation' rather than 'male presentation' which might have skewed his assessment, but the unfortunate guy was very upset at the diagnosis and felt like a liar to us all and disappeared.

i think the only way self diagnosis can be bad is if people take on traits they dont have or if they convince themselves they have it so much,and make it part of their identity/culture but end up diagnosed with something different-that would be a massive shock to their mental health and identity.

 

[ksheehan88]

Dear Tumblr
^i found this post while searching for autism blogs and it was quite thought provoking for me although i didnt agree with it.

the writer thinks its a bad idea to self diagnose with anything including autism and is quite ranty and certain about it, aparently shes a pyschology student from what i can make out- typically many of them think theyre qualified shrinks when they become a student of the profession.

do you think self diagnosis of autism is wrong and causes trouble for people who diagnosed? i dont agree with her.
people who are autistic but undiagnosed are usually good researchers and have the logical mind to detatch themselves from the traits and difficulties in order to self diagnose,so i take people who self diagnose with autism in the same way i take people diagnosed,ive only come across one person in the 15 odd years of being in the online autism and disability community; who had self diagnosed and ended up diagnosed with something else that i cant remember,however he related to the ASD traits greatly so he should have stayed as it helped him;and he could still have been autistic anyway as he had the 'female presentation' rather than 'male presentation' which might have skewed his assessment, but the unfortunate guy was very upset at the diagnosis and felt like a liar to us all and disappeared.

i think the only way self diagnosis can be bad is if people take on traits they dont have or if they convince themselves they have it so much,and make it part of their identity/culture but end up diagnosed with something different-that would be a massive shock to their mental health and identity.

This is the reason I seek an official diagnosis.

I knew nothing about AS before coming here, and the more I researched and read the more I related and things about my life were explained. I'm convinced I am an aspie.

But, I also feel as though I can't really refer to myself as an aspie because I haven't been told by a psychologist that I am.

My Mum believes I've invented thoughts/feelings associated to AS because I've researched it, or that its things that NTs experience too so its nothing to do with AS and she sometimes has me second guessing myself.

Once I've had an assessment and they've come to their decision, I will know for certain either way, and I then don't need to feel like a fraud.

 

[Connor Malone]

Meh there's not really any need to feel like a fraud. Think about it this site was created so that people could help each other. Yes it is meant for people with AS but it can help NT's as well. I think it's good to seek out a diagnosis if you can but if you cant, then a self diagnosis is a good indication of what you are like

 

[Mia]

I'm self-diagnosed and stumbled on it accidentally while doing research to figure out my husband's differences. While my husband has yet to accept the aspie diagnosis, I embraced it. Have so many of the traits that it explained my life from birth to the present, but I had other clues to work from, my younger sister is also autistic and my father and mother may have been as well.

For me the autism conclusion was an explanation for many sensory difficulties, for the terror I often felt when surrounded by people, from being physically touched by them. For my honesty and often, naivety in trusting everyone, believing everyone was 'good' and discovering that was not necessarily true. For my desire to be alone, always, after every work day and encounter. For feeling 'wrung out like a rag' every-time I had to eat in public, or see friends. All of it made so much sense, explained so much of the trajectory and choices in my life. As I was raised like an N/T I often felt caught between both worlds, think I still am.

There is no benefit to me for being officially diagnosed, knowing as I do in my fifties. I early retired and so can limit many of the work related interactions I had in the past, as well as the day to day. There are no dispensations for spectrum related disorders in my country or province, unless they prevent you from keeping or holding onto a job. Then you are classed as mentally or physically disabled, and I think become a ward of the province you live in. Who looks after your welfare, a bit like a 'nanny state.' It carries stigma here, for such a progressive country.

 

[toothless]

Meh there's not really any need to feel like a fraud. Think about it this site was created so that people could help each other. Yes it is meant for people with AS but it can help NT's as well. I think it's good to seek out a diagnosis if you can but if you cant, then a self diagnosis is a good indication of what you are like

i totally agree,lots of adults cant get a diagnosis for different reasons.
self diagnosis has helped so many autistic adults accept themselves and develop better mental health and confidence,plus its a useful stepping stone in psychology,i honestly cant see a bad thing about it really as it helps people to understand and better themselves.

 

[Connor Malone]

Where about's are you from? and I suppose only now are these conditions being properly looked at. I'm from Scotland so our country kind of helps, however you mostly just need to figure it out for yourself.

 

[toothless]

I'm self-diagnosed and stumbled on it accidentally while doing research to figure out my husband's differences. While my husband has yet to accept the aspie diagnosis, I embraced it. Have so many of the traits that it explained my life from birth to the present, but I had other clues to work from, my younger sister is also autistic and my father and mother may have been as well.

For me the autism conclusion was an explanation for many sensory difficulties, for the terror I often felt when surrounded by people, from being physically touched by them. For my honesty and often, naivety in trusting everyone, believing everyone was 'good' and discovering that was not necessarily true. For my desire to be alone, always, after every work day and encounter. For feeling 'wrung out like a rag' every-time I had to eat in public, or see friends. All of it made so much sense, explained so much of the trajectory and choices in my life. As I was raised like an N/T I often felt caught between both worlds, think I still am.

There is no benefit to me for being officially diagnosed, knowing as I do in my fifties. I early retired and so can limit many of the work related interactions I had in the past, as well as the day to day. There are no dispensations for spectrum related disorders in my country or province, unless they prevent you from keeping or holding onto a job. Then you are classed as mentally or physically disabled, and I think become a ward of the province you live in. Who looks after your welfare, a bit like a 'nanny state.' It carries stigma here, for such a progressive country.

mia, you are a perfect example of why self diagnosis works-it explains everything for you and has made you feel better about yourself-it is the same for my aspie sister who is in her late thirties and doesnt need a diagnosis,i cant understand why anyone would be against it,for autists in particular.

 

[Southern Discomfort]

Yeah, I have to admit that when someone says they're self diagnosed with something I do question it a little in my mind. I don't say anything out loud because really, what is the harm of them identifying with it? And what would really happen if I did? They're not going to stop associating themselves with these conditions.

But a fair amount of times I think that people can get it right themselves. Most of the time people don't need a doctor to tell them they're clinically depressed.

I actually am not diagnosed with Tourette's but I present with the symptoms of it and I have a family history of tics. They aren't quirky little behaviours, they've been physically debilitating at times and they hurt! My social worker has said that they're going to think about referring me to a specialist of some sort and that they're going to focus on this now because it is getting worse. I'm fully expecting who ever this person is to say to me, "I think you have Tourette's", and I'm going to act like I'm not saying in my mind, "You think!".

I do think that looking up and associating with autism is a little dangerous. People can connect with it and then go to a doctor and get shot down, then they can go from doctor to doctor until one of them says yes. Sometimes this is rightly done because there's a lack of understanding of how girls are affected by Asperger's or even straight up denial of there being girls with Asperger's. It it's still a little concerning.

For me though in terms of diagnosis of Asperger's even though I officially have one and it wasn't seeking for one, I'm still have trouble accepting it. I look at aspects of my behaviour and I think this isn't strictly irregular behaviour. For example there's a lot of people who spend too much time playing computer games out there who aren't autistic. I also think that I'm not bad at socialising either, the one thing that all people with autism are supposed to share. But I also know I might not be great at seeing the full picture on a matter like this and it is difficult to see these things from the view of other people on how you present to them.

Diagnoses hurt my head.

 

[toothless]

Where about's are you from? and I suppose only now are these conditions being properly looked at. I'm from Scotland so our country kind of helps, however you mostly just need to figure it out for yourself.

im from manchester/england-very differing experiences for adults on the spectrum here, especially females,is it the same in scotland? are there many shrinks experienced in ASD?

ive got easy access to shrinks, as im under the social services learning disability team, usually a couple of weeks to get an appointment, i guess UK aspies [as im autie] with a co existing mental health condition [common,such as anxiety, depression etc] could access the same quicker assessment or treatment if they requested a community needs assessment and were placed under the mental health team,im not sure how good they would be at diagnosing autism though,my shrink is autistic [undiagnosed,he doesnt want a diagnosis but he clearly is autistic to me]-he is quite possibly one of the best shrinks in the UK for autism.

 

[toothless]

Yeah, I have to admit that when someone says they're self diagnosed with something I do question it a little in my mind. I don't say anything out loud because really, what is the harm of them identifying with it? And what would really happen if I did? They're not going to stop associating themselves with these conditions.

But a fair amount of times I think that people can get it right themselves. Most of the time people don't need a doctor to tell them they're clinically depressed.

I actually am not diagnosed with Tourette's but I present with the symptoms of it and I have a family history of tics. They aren't quirky little behaviours, they've been physically debilitating at times and they hurt! My social worker has said that they're going to think about referring me to a specialist of some sort and that they're going to focus on this now because it is getting worse. I'm fully expecting who ever this person is to say to me, "I think you have Tourette's", and I'm going to act like I'm not saying in my mind, "You think!".

I do think that looking up and associating with autism is a little dangerous. People can connect with it and then go to a doctor and get shot down, then they can go from doctor to doctor until one of them says yes. Sometimes this is rightly done because there's a lack of understanding of how girls are affected by Asperger's or even straight up denial of there being girls with Asperger's. It it's still a little concerning.

For me though in terms of diagnosis of Asperger's even though I officially have one and it wasn't seeking for one, I'm still have trouble accepting it. I look at aspects of my behaviour and I think this isn't strictly irregular behaviour. For example there's a lot of people who spend too much time playing computer games out there who aren't autistic. I also think that I'm not bad at socialising either, the one thing that all people with autism are supposed to share. But I also know I might not be great at seeing the full picture on a matter like this and it is difficult to see these things from the view of other people on how you present to them.

Diagnoses hurt my head.

southern discomfort,thankyou for giving me an alternative view point on this,i understand,its a difficult subject.

i had severe physical and verbal tics up until one or two years ago-they came and go with stress especially, i hated the idea of self diagnosing myself with tourettes as it was very common back then and around the time that town in america had lots of teenagers being called tourettes 'sufferers' after a few weeks of tics,so i just said i had lifelong tics but ive not had them for a while,perhaps it was the haloperidol that helped i dont know.

i think itd be good for you to see a tourettes doc,as there might be a good medication to help your tics that they can prescribe,the label;not so neccessary i dont think?

 

[the_tortoise]

do you think self diagnosis of autism is wrong and causes trouble for people who diagnosed?

No, I don't think it's wrong. Especially when you consider that the diagnosis is a bit subjective even when an expert professional does it, because there are no physical tests.

I don't think it causes trouble for people who are diagnosed, either -- I think it's stereotyping and over-generalizing that causes trouble.

One person insisting their autism presentation is the only autism presentation and anybody who isn't exactly like them isn't autistic -- that causes trouble....I think whether they are self-diagnosed or professionally diagnosed, whether the diagnosis is right or wrong makes only a little bit of difference or no difference.

When non-autistic people decide that everyone with autism is a stereotype or a clone of the one or two autistic folk they know, that causes trouble -- especially if that person is a journalist or a doctor or a teacher or a social worker or some other person with a lot of power and/or influence in their community or in wider society.

 

[jamesaldrin]

My Mum believes I've invented thoughts/feelings associated to AS because I've researched it, or that its things that NTs experience too so its nothing to do with AS and she sometimes has me second guessing myself.

My friend did this to me and I got kind of irritated.

I told him that the reason I wear only three different shirts to the gym is because I need patterns and repetition in my life. Then I said that "We need patterns and repetition," referring to autistics. He asked me if I've been researching autism more and going on that forum (this one), and I said yes although I knew he would just blow me off once I did say yes. And yeah, he blew it off and told me to "live my life the way I want."

Now yeah, there is truth to what he's saying. I shouldn't try and conform to a list of symptoms. But I still wish he'd take me seriously when I tell him I need repetition.

 

[Southern Discomfort]

southern discomfort,thankyou for giving me an alternative view point on this,i understand,its a difficult subject.

i had severe physical and verbal tics up until one or two years ago-they came and go with stress especially, i hated the idea of self diagnosing myself with tourettes as it was very common back then and around the time that town in america had lots of teenagers being called tourettes 'sufferers' after a few weeks of tics,so i just said i had lifelong tics but ive not had them for a while,perhaps it was the haloperidol that helped i dont know.

i think itd be good for you to see a tourettes doc,as there might be a good medication to help your tics that they can prescribe,the label;not so neccessary i dont think?

Yeah. I don't know what they have planned really. I guess I might find out this Wednesday at my next psychiatrist appointment. Risperidone is a drug they can use to treat tics, I don't know if it's doing anything for that. Have these tics started it was a few months before I starts on risperidone, and they've just grown and grown with more tics being added to the vocabulary. I can handle the tics most of the time, it's just on occasion they get really bad and that's when I'd like some help. I don't know what to do.

 

[jamesaldrin]

Self diagnosing myself with Generalized Anxiety Disorder has helped because I found a help-book about it that has really helped me.

Those pictures that the blog poster put on that post looked ridiculous to be honest. People diagnosing themselves with a thousand disorders.

There must be a small percentage who got all (or most) of those diagnoses right, but surely people are overdoing it for the most part.

 

[Full Steam]

I'm self diagnosed.

I came into Aspergers through a winding path that started with multiple chemical sensitivities.

I went the official route, which helped a little in the beginning, but really only to help get me a target for further research.

From then on I've done everything myself. I've researched and tested every thing in my diet, supplementation, methylation cycle, and I've 95% got on top of my MCS issues.

I've been to see my doctor numerous times when I needed help, but even though she's the best doctor Ive had has been of very limited help as GPs are too general.

I finally came across Aspergers as there was something left afrer the MCS was gone. I was still getting suddenly exhausted for no obvious reason, when the food I'd eaten was 100% safe.

So I turned my research to Aspergers and autism, and suddenly not only my exaustion was explained, but everything else that has been different about me.

The morning after my self diagnosis, I woke up at 4am with my mind churning through past experiences, and traits for about two hours. "That's why you did that, that's why your like this, etc"

If I'd left it all to standard medicine I'd be barely able to work, fatigued every day and constantly depressed with no knowledge of the difference that is inherent in this body/mind.

So I have pretty strong opinions about this. We give FAR too much reponsibility and power away when we pass our bodies over to the medical world.

I believe everyone should keep responsibility ,and work with doctors to help themselves while doing their own research.

At the end of the day it's your life, and you who will suffer from a doctor's mistake not the doctor.

The medical world is now the third leading cause of deaths in the USA. I'm not suggest we shouldn't trust doctors, just that we should trust ourselves as well.

 

[OkRad]

I have learned that auties and aspies I know are brilliant. I have learned that many shrinks I go to are not. In fact, they are jealous and intimidated by them.

I believe aspies and auties should be part of the dx process. It would be less trauma for everyone. If they say you are not, they would be very kind about it. I have never met a person with autism who was mean or cruel. Adam Lanza may have not even had it, to be honest.

 

[Bellatrix]

People who are autistic, but undiagnosed, are usually good researchers and have the logical mind to detatch themselves from the traits and difficulties in order to self diagnose.

Yes, the ability to remain detached, impartial, and examine a problem in a manner that leaves out how one may actually feel about the problem in question, is, as I have come to learn, one of the key features of being "on the spectrum" in the first place. God knows that having the ability to do this is rare enough, with so many these days allowing their emotions to cloud their judgement, so if there is ANYONE on Planet Earth who can "self-diagnose", it is us. I myself have tried very hard to find reasons to believe that I do NOT have Asperger's Syndrome, searching for any evidence whatsoever that would discount that particular possibility, so at the very least I cannot be accused of indulging in confirmation bias, a hazard that too many all too often fail to avoid (I've noticed it is particularly striking in those who believe that the religion they happen to have grown up with is the only one that is true).

 

[Bellatrix]

So I turned my research to Aspergers and autism, and suddenly not only my exaustion was explained, but everything else that has been different about me.

Me too. Asperger's Syndrome explains like nothing else can why I am the person I am now, why I was the person I was in the past, why certain things only ever seemed to happen to me (and no one else), why I was treated the way I was by others, why they usually failed to understand me (and vice versa), why I could never grasp the concept of body language, or appreciate celebrity gossip and sport, why I hated sport in general, why I like certain things that apparently few others do, why... why I could go on forever here.

 

[NeoPhile]

I have to say that I don't trust self diagnosis. You're not necessarily autistic just because you say you are. Only a trained professional can distinguish between an ASD and other disorders. Self diagnosis is not scientific.

 

[Bellatrix]

He asked me if I've been researching autism more and going on that forum (this one), and I said yes although I knew he would just blow me off once I did say yes. And yeah, he blew it off and told me to "live my life the way I want."

You need to "blow off" this so-called friend of yours, because from what I can tell he is no friend at all. Dump him. He's a jerk. People like him aren't good enough to be friends with people like us. He doesn't deserve the privilege.