The Stigma of Self-Diagnosis

[Spinosaurus kin]

Has anyone else observed a stigma associated with being a self-diagnosed Aspie? Such as people saying things like:

"You're just looking for attention."
"You're just making excuses."
"You don't really have Aspergers."
"You're just hopping on the bandwagon."
"If you haven't talked to a psychologist, it's not real."
"You want people to think you're a tortured genius. You're really just annoying and socially awkward."

I don't tell people that I'm an Aspie for this reason. I see people posting comments like these on boards and articles online and I'm afraid of receiving this reaction should I ever "come out". There's a genuine difference between being a run-of-the-mill hypochondriac and actually having the disorder.

This crap is what i get from my parents whenever I bring it up. It really makes me wonder how much they know or care about me.
My mother, who is always flip-flopping on the whole idea of me being autistic, believed that an autistic person can't cry.

WHAT THE ****.

If you excuse my arbitrarily bad language, that was the point where I lost all respect for my mother's opinion on the matter. My parents wanted to label me as just an immature little kid because that was changeable.

Strangely, kids at my school are more accepting than my parents. I go to a grammar school, and am currently in sixth form, and most people there are pretty understanding about the whole thing. There is some level of issue when I suspect my friends, but one of them knew about it before me, so he's clear. The other friend is on the border, but has the most noticeable "quirks" so it confuses me as to why they think that he has the lowest likelihood.
Oh well, maybe my unprofessional opinion is not enough. But nobody shall dispute I have the symptoms and that means i have the condition. Simple really.

 

[Turk]

This crap is what i get from my parents whenever I bring it up. It really makes me wonder how much they know or care about me.
My mother, who is always flip-flopping on the whole idea of me being autistic, believed that an autistic person can't cry.

WHAT THE ****.

If you excuse my arbitrarily bad language, that was the point where I lost all respect for my mother's opinion on the matter. My parents wanted to label me as just an immature little kid because that was changeable.

Strangely, kids at my school are more accepting than my parents. I go to a grammar school, and am currently in sixth form, and most people there are pretty understanding about the whole thing. There is some level of issue when I suspect my friends, but one of them knew about it before me, so he's clear. The other friend is on the border, but has the most noticeable "quirks" so it confuses me as to why they think that he has the lowest likelihood.
Oh well, maybe my unprofessional opinion is not enough. But nobody shall dispute I have the symptoms and that means i have the condition. Simple really.

Yep, unfortunately my mother was the same. She use to think, to accept that I was broken, was a failing on her part. Her denial of my condition, only secured her belief that SHE hadnt failed me. However, in my eyes, she confirmed that fact. Im not sure why, but many parents feel somehow responsible, and just dont know what to do with this information. Denying it drives a wedge between trust and respect, forever changing an love that should be unconditional

 

[amiami96]

I agree with you! I was almost labeled ADD until I looked more into AS and found out I'm on the spectrum. My mother and I watched a movie where the character was AS and it was a huge wake up call to her.

I had constant meltdowns in elementary school and when she asked my doctor(MD) about autism she said "it's kids who would've just been 'quirky' decades ago." So my mother didn't think too much of it and that I would outgrow it.

I brought it up lightly in school and my classmate insisted I can't be on the spectrum because her 8 year old brother is and he has a lisp and I don't.

Also being a girl who dresses fashionably , I think makes it harder. I'm just seen as "strange" and actions that would be endearing if I was a male are now "Endearing" and "adorable".

I'm getting an official diagnosis in a couple of weeks though, only to make an IEP while in University. I'm a pretty successful aspie so far.

 

[Ylva]

Hmm… the logic of NTs. What would a lisp have to do with it?

A friend of mine has a wife who behaves aspergically, but she denies it and his main arguments are that she changes tones when she speaks (although I've never heard that) and that she dresses fashionably. In any case, I've decided to just believe him; I don't deal with her that much, and it's really not that important to me.

 

[Kuribo]

The way in which self-diagnosed Autistic people are treated in the online community is absolutely disgusting at times. I've seen people post an innocent question and be treated with total hostility.

I asked someone who is often hostile towards the self-diagnosed why he did what he did, and his piss-poor attempt at justifying his behaviour was "it can be used as an excuse". Once I and a few others had ripped his argument to shreds, he didn't return, but nevertheless continued in other areas of the site.

It's sad that such prejudice exists within a sub-culture of people oppressed by it. To anyone who has been victimised by this pathetic behaviour, I'm sorry.

 

[Dirtdigger]

The way in which self-diagnosed Autistic people are treated in the online community is absolutely disgusting at times. I've seen people post an innocent question and be treated with total hostility.

I asked someone who is often hostile towards the self-diagnosed why he did what he did, and his piss-poor attempt at justifying his behaviour was "it can be used as an excuse". Once I and a few others had ripped his argument to shreds, he didn't return, but nevertheless continued in other areas of the site.

It's sad that such prejudice exists within a sub-culture of people oppressed by it. To anyone who has been victimised by this pathetic behaviour, I'm sorry.

Not only those who self diagnosed has hostility thrust upon them, but some unusual questions aren't taken seriously either. I bet I will never post another question of the unusual kind after the answers I got from some of the members the last time. It is sad when one Aspie/Autistic picks on another Aspie/Autistic on this forum making it not a safe haven for some Aspies and Autistics if they are a little too different such as myself. Of course there are trolls on this forum bent on causing trouble too.

I've had two diagnoses by professionals and I have taken the on-line Aspie or Autism tests which always indicates Autism. One test even said I was a bit severe. Of course I didn't need a test to tell me that but it did confirm it. But, can psychiatrists do any better in getting an accurate diagnosis? I've read about too many misdiagnoses from these so-called experts who really know very little about Autism.

Actually there are some pretty good on-line diagnosis tests because they are based on the DSM-IV for mental disorders and I think they can be a very useful tool in pinpointing certain symptoms as long as they can be answered as honest as possible with a lot of thought to each question. I hope a test comes out based on the DSM-V. It is the criteria in this book that I go by.

 

[Spinosaurus kin]

Not only those who self diagnosed has hostility thrust upon them, but some unusual questions aren't taken seriously either. I bet I will never post another question of the unusual kind after the answers I got from some of the members the last time. It is sad when one Aspie/Autistic picks on another Aspie/Autistic on this forum making it not a save haven for some Aspies and Autistics if they are a little too different such as myself. Of course there are trolls on this forum bent on causing trouble too.

Hey, don't let a few ***holes on the internet stop you from asking questions. We all get hate from time to time.
What sort of questions would you have asked that got so much hate? Some questions might have never been answered if we kept them to ourselves. Like "why am I so weird?" If a HUGE NUMBER of us had not asked that, and searched for an answer, we may not be here right now.
From one self-diagnosed aspie to another, never shut up because other people don't like what you say. Here should be a place where it is practically just text against you.
You might get a few stupid comments, but on the same side, you might get even one reasonable answer that helps further your understanding. And that makes the criticism worth it.

 

[Carlos]

This is a timely topic for me, having lived on both sides of the issue. I fully accept and support those who are self-diagnosed. In fact, I needed that "self-diagnosed" category to gain entrance to the Aspie community. And official diagnoses can be expensive and not easily obtainable by many. So what I say now is only about my own experience and I speak for no one else but me.
I got my official diagnosis just this week. The doctor said I am "textbook Aspergers." And I was shocked to find what a difference the diagnosis made to my sense of identity. Yes, previously I took three online Aspie tests and scored positive on all three. But there was always this nagging doubt in my mind: Am I just kidding myself? Am I really one of these people? Do I want it too much? An unexpected need arose in me to go for an official diagnosis.
I was a nervous wreck for three days before my appointment. What if I turned out to be an NT after all? Then I'd have no explanation for my social clumsiness, meltdowns, all that kind of stuff. So when the diagnosis came down it was a tremendous relief. It gave me an explanation that unlocked countless mysteries of my life.
For this very reason Michael Carley in his book strongly encourages getting the diagnosis. In my case he was right. But everybody is different. Others may have different needs. So I respect and cherish the diversity, and I hope the "undiagnosed" route becomes an entry for many anxious new members as it was for me. The official diagnosis has changed my life forever. But the bottom line is: this is a personal decision.

 

[Jordan]

When I was diagnosed with AS, it was a sigh of relief. A whole weight got off my shoulders and I felt that the questions I have been asking have been answered. However I still get the odd person saying "I didn't know you had Aspergers", or "You are just using it as an excuse to get what you want".

These phrases crop up in conversations A LOT. And then people questioning every move I make. It's almost when an NT finds out about it, they can use it to their advantage. It can be mental torture at times. And often I would feel anxious in social situations. I would just "try" to fit in with the conversation of others, but it'd never work out for me.

Before the diagnosis I never heard of Aspergers. I have heard of autism though and I did used to feel like I had autism. I used to go on message boards about it, and everyone agreed.

Also, the diagnosis was referred to me as a college mentor picked up on it a couple of years back. The diagnosis last year has explained the social barriers I have been having with people, and it explains my behavior towards people. It's more of an explanation towards my behavior, it's never an excuse. Although when I try to confide in others about it, they say it's just an excuse.

Because people know I have Aspergers (some are accepting, others who are arrogant are not). Especially family members when they say it's just an excuse for bad behavior. And I often get brought up by tone-of-voice, and how I am perceived to a NT. It can almost strike as mental torture for me because people question it everyday.

I need to know my family is accepting on it and to not keep bringing up my tone-of-voice, and what I say. It can be a social barrier for many people who have autism. It also makes me want to go into a meltdown because I feel isolated from others. After all, I see the world differently to others.

My father is coming more accepting of it. So is my Grandma. I'm not sure about the rest of my family, but it's often a relief that they accept me for who I am!

 

[Carlos]

Hi Jordan,

Because of the kind of experiences you have been through I am very hesitant to tell other people that I have Aspergers. I sympathize with you because I feel an urge to tell people, to help them understand me and know what I deal with. But I'm afraid that the word "Aspergers" won't mean the same to them that it means to me. So right now very few people know. I have not told my mother. Only my sister, my wife, and the one other friend I have know about my status. I have felt strongly tempted to tell colleagues at work, but fear the results would only make me feel worse. I'm afraid that if I tell people I work with, they will use it to dismss me.

But I am still very new at this, just trying to take it slowly.

 

[Jordan]

Hi Jordan,

Because of the kind of experiences you have been through I am very hesitant to tell other people that I have Aspergers. I sympathize with you because I feel an urge to tell people, to help them understand me and know what I deal with. But I'm afraid that the word "Aspergers" won't mean the same to them that it means to me. So right now very few people know. I have not told my mother. Only my sister, my wife, and the one other friend I have know about my status. I have felt strongly tempted to tell colleagues at work, but fear the results would only make me feel worse. I'm afraid that if I tell people I work with, they will use it to dismss me.

But I am still very new at this, just trying to take it slowly.

Of course, I agree with you totally! The outcome of people knowing about my Aspergers, has caused a lot of anxiety in group work. A diagnosis to an aspie can have an affect, either good or bad. I guess it's more to the case of "acceptance" than anything. In my case, I thought I would be accepted, now I know it's not the case, I won't bring it up in conversations.

I am so glad that you are finding it easy to tell a select few people. - Otherwise for me, I tell people I have it because I feel safe that they'd understand me.

 

[Dirtdigger]

Such a great message, Jordan. My brother who lives next door renting from me didn't think I had Autism accusing me of self diagnosing and stuff. The reason I told him I have Autism in the first place is because he is always picking on me even during my childhood and he is the same age as I am. Not only did I tell him I was professionally diagnosed twice at 5 or 6 years old but again in my mid 30s and told him about almost being put in a mental hospital and being taken out of the first grade, I was also ready for him with the severest of my systems by starting out "Have you ever wonder why I never wanted a relationship with a man, never wanted to get married?". Before I got my next symptom out which was a preoccupation with parts of toys or objects he shut me up and said he didn't want to hear anymore. I was going to tell him about every symptom that he was aware of when I was younger and remind him of some of them. But at least I didn't have to remind him about my severe social issues which I still have to this day since he was already aware of them and how different I was.

So people need to realize that intelligence and looks don't have anything to do with being on the Autism Spectrum which you are since Aspergers is on the Spectrum. You are proof of that because I can tell you are very intelligent as I read your post. Of course with the DSM-V Aspergers no longer exist and folks are diagnosed as having Autism. Jordan I feel your pain when it comes to relatives. I would sure love to hear more from you in a private message and I can go into more detail about me and the challenges I face.

 

[Jordan]

Such a great message, Jordan. My brother who lives next door renting from me didn't think I had Autism accusing me of self diagnosing and stuff. The reason I told him I have Autism in the first place is because he is always picking on me even during my childhood and he is the same age as I am. Not only did I tell him I was professionally diagnosed twice at 5 or 6 years old but again in my mid 30s and told him about almost being put in a mental hospital and being taken out of the first grade, I was also ready for him with the severest of my systems by starting out "Have you ever wonder why I never wanted a relationship with a man, never wanted to get married?". Before I got my next symptom out which was a preoccupation with parts of toys or objects he shut me up and said he didn't want to hear anymore. I was going to tell him about every symptom that he was aware of when I was younger and remind him of some of them. But at least I didn't have to remind him about my severe social issues which I still have to this day since he was already aware of them and how different I was.

So people need to realize that intelligence and looks don't have anything to do with being on the Autism Spectrum which you are since Aspergers is on the Spectrum. You are proof of that because I can tell you are very intelligent as I read your post. Of course with the DSM-V Aspergers no longer exist and folks are diagnosed as having Autism. Jordan I feel your pain when it comes to relatives. I would sure love to hear more from you in a private message and I can go into more detail about me and the challenges I face.

Sure! I'd love to be able to discuss about the problems you face. I'll even tell you about the problems I've faced, and been part of social barriers that most people take for granted. As I am socially awkward, I do find it troublesome when in awkward social situations and I often struggle to read between the lines. And it's almost a social problem when I find out other people use it to their advantage and force myself to do things that I don't want to do (that's not my special interest).

My over-thinking and knowledge of things, can often get me into trouble in a lot of situations.

 

[Dirtdigger]

Some of the other symptoms I have besides severe social issues, lack of empathy, abnormal eye contact or no eye contact, my voice either go real low or really loud which cause people to accuse me that I'm screaming at them. not being able to interact socially, not wanting to share my interests that are very personal to me along with what I mentioned in my previous post, are:

1. Me repeating words and phrases over and over. I'm much more aware now and I'm not quite as bad. Also reading the same thing about 20 times before I can move on. This seems like it is a little worse now.
2. I have very intense and restrictive interests which cause me many times to make me not even aware of the world around me.
3. Just one little thing can disrupt one of my routines that sends me into meltdowns where I hit things, kick things, curse and cry. I have even hit my head against the wall and threw things. Though these aren't quite as bad now days they still occur and I have the broken bones to prove it. It's kind of like I'm a Dr. Jekyll turning into a Misses Hyde during these meltdowns.
4. I have extreme sensory issues with low frequency sounds and bass music, especially drums and guitars as well as a bunch of high pitch yapping little mutts that live across the street which also cause meltdowns and it starts all over again. Earplugs don't help because the low frequency sounds go right through them and I can feel the sounds as well. Sometime these meltdowns get so bad that I may cry for 2 or 3 days in a row.

I just wonder if you have any other symptoms besides the social issues and whether your family was ever aware of them like my brother was with me?

My preoccupation with objects/toys or parts of objects/toys is the biggest problem for me. As much as I love this one symptom I dread the thought of going anyplace overnight. I will get on the computer, but I'm always near my special objects and only go to the store when I have too because of this. I know this is really strange to even other Aspies, because the Doordoctor didn't even understand how all I want to do is be with my special objects. It was really hard being away from them when I worked which I also had a lot of social problems because I couldn't get along with co-workers and management. I was OK as long as I got to work by myself though.

I have to admit at least 3 of my symptoms are as severe as they get which you won't see in the majority of those on the Spectrum. That is probably why I'm not taken seriously or have smart remarks made because I am so different from everyone else.

 

[Jordan]

Some of the other symptoms I have besides severe social issues, lack of empathy, abnormal eye contact or no eye contact, my voice either go real low or really loud which cause people to accuse me that I'm screaming at them. not being able to interact socially, not wanting to share my interests that are very personal to me along with what I mentioned in my previous post, are:

1. Me repeating words and phrases over and over. I'm much more aware now and I'm not quite as bad. Also reading the same thing about 20 times before I can move on. This seems like it is a little worse now.
2. I have very intense and restrictive interests which cause me many times to make me not even aware of the world around me.
3. Just one little thing can disrupt one of my routines that sends me into meltdowns where I hit things, kick things, curse and cry. I have even hit my head against the wall and threw things. Though these aren't quite as bad now days they still occur and I have the broken bones to prove it. It's kind of like I'm a Dr. Jekyll turning into a Misses Hyde during these meltdowns.
4. I have extreme sensory issues with low frequency sounds and bass music, especially drums and guitars as well as a bunch of high pitch yapping little mutts that live across the street which also cause meltdowns and it starts all over again. Earplugs don't help because the low frequency sounds go right through them and I can feel the sounds as well. Sometime these meltdowns get so bad that I may cry for 2 or 3 days in a row.

I just wonder if you have any other symptoms besides the social issues and whether your family was ever aware of them like my brother was with me?

My preoccupation with objects/toys or parts of objects/toys is the biggest problem for me. As much as I love this one symptom I dread the thought of going anyplace overnight. I will get on the computer, but I'm always near my special objects and only go to the store when I have too because of this. I know this is really strange to even other Aspies, because the Doordoctor didn't even understand how all I want to do is be with my special objects. It was really hard being away from them when I worked which I also had a lot of social problems because I couldn't get along with co-workers and management. I was OK as long as I got to work by myself though.

I have to admit at least 3 of my symptoms are as severe as they get which you won't see in the majority of those on the Spectrum. That is probably why I'm not taken seriously or have smart remarks made because I am so different from everyone else.

When I often go into a meltdown over the smallest thing that irritates me, I can find myself shouting at a person for no reason.

When out on a busy road, I am so anxious to the point that I need to get where I need to be and no more. Travelling is a hard thing with aspies, because we are expected to travel on our own. This can then induce unwanted pain if we are rejected a lift from another person. This can also cause a meltdown. Rejection and loneliness can revert me to become either mute, or rapidly reciting of information.

I've have had a history of being bullied. The not knowing of what to say causes increasing anxiety, and my anxiety can induce certain behavior that I don't mean. My behavior can be seen as others as over-the-top when I try to prove a point.

It's also depending on the stress I am under, and the tolerance of those around me. Often I find myself missing strings of information that is simple to an NT. I can also misread someone's mental state, thus causing confusion and anxiety. I also do not recognize when to speak, and this creates social isolation.

My manual dexterity is generally okay. I can walk, stand, bend reach. The only exception to this was if I was put into a situation which is unfamiliar to me, my manual dexterity can suffer.

If I have to organise several things at once, I may be prone to dropping things, given that the area in that social setting is very stressful.

Also, my information intake can be effected in the way I process information. I remember things better if I see them, rather than just hear them.

Also, I use language in a very literal way. If in pressured circumstances, this can affect my ability to make eye-to-eye contact.

When in a quiet area in a workplace, I am able to understand and retrieve information from peers. I don't tolerate touch of others, unless I know them well. The only exception to this would be if someone needed comforting, I'd try and give them a hug. Otherwise I try to avoid it.

In brightly lit areas, I can't work well. I wouldn't be comfortable in a crowd.

When ficscated in things that I enjoy doing, (technology,gaming) I often loose sight of other things. I am also often distracted by noise and movement coming from peers.

With my coursework, I find it difficult to know when something is done good enough. Therefore, I do what I am told and no more. Often, my tutor checks on me to make sure that I am doing the work that I am set. Otherwise, I can just sit there and not ask for help.

Also, I have a love for routines, so if something effects me emotionally, I can often slip out of my routine and daily hygiene. There has been times where I have locked myself in my own flat for days, and not made contact with anyone. Also if there are current changes to my day, like change of coursework. I often find it difficult to apprehend. I often prefer to plan and predict my day ahead and follow routine.

I am also target to abuse from peers. I hate following inexplicit rules made by other people. It can cause me to go into depression and anxiety. However, when I am with people I know well, I can make good conversation without feeling anxious.

 

[Carlos]

Of course, I agree with you totally! The outcome of people knowing about my Aspergers, has caused a lot of anxiety in group work. A diagnosis to an aspie can have an affect, either good or bad. I guess it's more to the case of "acceptance" than anything. In my case, I thought I would be accepted, now I know it's not the case, I won't bring it up in conversations.

I am so glad that you are finding it easy to tell a select few people. - Otherwise for me, I tell people I have it because I feel safe that they'd understand me.

You're right and I am so glad I have these groups to share experiences with. Going through a crisis at work right now which i'm sure being an Aspie makes it harder. So it's good to have this. My sister, whom I trust, wants me to tell my mother about it, but I know it would only create complications and would not be worth it. I'm still being very careful right now.

 

[Dirtdigger]

There are some great posts I'm reading and this is what I like to see because I learn even more about myself. There are some issues I didn't mention but have that Jordan has mentioned such as being too literal about things, and fluorescent lights bothering me to the point where I had to do something such as take a couple of tubes out of the fixture when I worked as an inspector. But, I notice that no one has any really bizarre symptoms of Autism like I do. It's probably best that 98 % on the Autism Spectrum isn't saddled with the one symptom that I have, because this one symptom has impacted me more than my other symptoms.

 

[Jordan]

There are some great posts I'm reading and this is what I like to see because I learn even more about myself. There are some issues I didn't mention but have that Jordan has mentioned such as being too literal about things, and fluorescent lights bothering me to the point where I had to do something such as take a couple of tubes out of the fixture when I worked as an inspector. But, I notice that no one has any really bizarre symptoms of Autism like I do. It's probably best that 98 % on the Autism Spectrum isn't saddled with the one symptom that I have, because this one symptom has impacted me more than my other symptoms.

Light fixtures would annoy me to the point, if someone purposely turned of the lights in the class, it'd cause sensory issues. Because I am used to it being light in that room, it causes problems for me such as dexterity issues. I can never know why it happens, it just does.

I'm sure that Sensory Integration is common for people with AS and autism. It was just never mentioned to me in full detail. I am more prone to sensory issues when I'm in a chaotic area. If a door slams, or a pin drops, I am quick to know what it is. If someone opens a door to the work area, then I am quick to turn my head to see what's going on. I can never concentrate on tasks because of sensory overloads.

 

[Jordan]

So with regards to the Stigma of self-diagnosis, It can be either way. I get stigma when I am fully diagnosed.

So the question is, does everyone with Aspergers get stigma from other people whether you are self or officially diagnosed?

 

[CupcakeQueen]

well ive never heard those things said to anyone but im sure people have encountered that. i can admit to being wary of self-diagnoses because i wonder how reliable they are, but the same could be said about psychologists overdiagnosing a particular condition as well. besides, who are other people to judge? if they wont believe that you've done extensive research and thought hard about it then they aren't being supportive.