Consequences of a Wrong Diagnosis

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Hello, all. I'm a neurotypical, but I have known the feelings of people with Asperger's Syndrome for several years. It was like living in another world or something: I didn't have Asperger's, but thought I did, which really says something about the power of suggestion. So I'd like to share my experience.

When I was a little girl, my parents knew there was something the matter with me. I went to kindergarten and then to school, but didn't talk to any of the kids there. I only talked to and played with my two younger sisters, who have been my best friends for a long time. My parents, however, were concerned and took me to therapist after therapist. Nobody was able to figure it out until I was taken to this "brilliant" woman, who told my mom that I may have a very mild form of Asperger's. My parents, who I believe were desperately hungry for a diagnosis, pounced on the idea and turned the uncertain semi-diagnosis into an incontrovertible fact. Since then, life = hell for me.

My first reaction after my mom told me was immense shock. I always thought I was just quiet and eccentric, I didn't know I had a form of autism. Then I cried for a long time because I believed that having such a stigma put on me automatically doomed me to a hopeless, friendless existence. My parents began treating me as a case study, not an individual. They'd talk to each other about me as if I wasn't there. Every little quirk I had, every time I yelled at my dad or had a mood swing, the explanation was "Asperger's Syndrome."

By then I was in high school and started feeling the first pangs of loneliness. My sisters started to make friends of their own and I wanted that too, so I began to approach people, for the first time in my life, and ask how their weekend was, what their families are like, what hobbies they have, etc. But that was just it: I was stuck at that level. I had no idea how to progress to the next level: friendship. I was confused and frustrated about why other people do it naturally and I can't. My mom would tell me how to show interest in people and would say that I should join a support group for people with Asperger's, but I rejected the idea. Somewhere, deep in my heart, there was a hope that the diagnosis was a fluke and that I'm really "normal."

This went on for several years. Then during sophomore year of college, I became paranoid that I'd spend the rest of my life without friends (because I heard that college is where the closest, most long-lasting friendships are formed) and developed gastritis. My doctor said that it may be from nerves and sent me to a psychiatrist and psychotherapist. The psychiatrist prescribed Paxil and the therapist talked to me and revealed what I've always wanted to hear: I'm a normal person, who is just shy, and I can learn to make friends.

From then on, I began life anew. I followed my therapist's tips to a tee and soon found myself with a wonderful group of girl friends, who are huge Harry Potter fans, like I am. And all this because I had faith in myself. Now, some of you guys may be misdiagnosed as well, which could be holding you back from an amazing experience. I joined this forum because I have lived as an Aspie and therefore may be able to understand your feelings and concerns. I'll be on this forum in order to give you tips and help you lead better lives.

Good luck to all of you and don't let Asperger's hold you back.

You sound kind of similar to me actually. I'm diagnosed but not certain it was correct. ("Mild" Aspergers) My few friendships have been initiated by the other person (i.e. my friendship-initiating skills are absent) and I am not close to anyone right now, but I haven't been trying to make friends for a while. I'm not lonely, so it's no problem.
It was my mother that was convinced I had Aspergers after reading about it, and she soon convinced my father. I thought it was a silly idea, though I noticed that I had a significant amount of traits. Unlike you though, I didn't react to the diagnosis emotionally but by developing an interest in the syndrome and learning all that I could about it. It really is a fascinating condition, whether I have it or not. I had some neuropsychological testing done recently, and the results will be interesting.

That is very annoying. I can sympathize.

I'm glad you were able to get past that! That is very encouraging.

You sound like broader autism phenotype... you know, the kind of NT who is just on the line to Asperger's, or else the kind of Aspie who is just on the line to NT, depending on who's looking at it or how stressed you are. Not learning to socialize until high school or so means either extreme introversion, social phobia, or difficulty with social skills.

You do have strong AS traits. The fascination with Harry Potter, the initial disinterest in other kids, and then the formulaic interaction, look rather Aspie to me. Maybe not strong enough for a diagnosis, but enough to get that psychologist to stick one on you anyway. Maybe she tends to be overly generous in her diagnostic labeling, who knows.

The way your parents treated you was wrong. Blaming everything on Asperger's... no. Not even if you have AS so obvious it's diagnosed when you're two is that ever true. People with AS are more than just walking AS stereotypes, and their behavior has to do with their choices and their feelings and the people and things around them, not just with their AS. It seems like your parents were reasoning along the lines of, "Well, this annoying thing is all due to AS so it can never be changed, because autistic people can't learn and autism never changes without a miracle." BIG misconception. Of course autistic people can learn. Your parents seem like they were just looking for a label they could use to write you off, and not blame themselves that you weren't the perfect child they wanted.

Aspies can learn to make friends. Your parents' reasoning--that if you're Aspie that means you can never learn and will never learn--is just way off base. Asperger's, or the social part of it anyway, is a little like dyslexia; it's a learning disability in the social area of life. But dyslexics can learn to read; they may always have a hard time with it, or do it more slowly, but they can and do learn to read. Same with Aspies and socializing.

Hello and welcome.

Interesting to hear your perspective.

Replace the words "parents" with "Primary School" and you've pretty much written the story of my life. The other kids used to avoid me because I was labeled. I went through the therapy, some of the help was less than helpful.

As for whether I am clinically AS or not, the jury's still out. I've still got the dx on record though. I personally think that the subjective "qualitative" criteria themselves could be interpreted slightly differently by different professionals. I think that the category of AS itself is too broad and imprecise. Perhaps several degrees of severity would be a better system?

What about the really mild cases?
Is it worth labeling at all?

I do meet some of the criteria. I definitely still have social processing issues but I am a caring person, caring in the practical sense.

Mind you, I've only had social issues in very crowded group-work orientated environments. I think that some people are just better adapted to quiet solitary work. Put me in the right stable environment and I'm brilliant.

Many people have said that I have detailed way of perceiving the physical environment: that I am sure of. They also say that I can see things that others can't. Some people have said that they wouldn't want to change me. Definitely something different about me though: otherwise I'd have never had all those comments. When will people learn that different doesn't always equal bad?

I was "misdiagnosed" alright. I was "misdiagnosed" as being "completely useless".

Yes we can make friends.
We're not completely hopeless.
Sometimes it's still a struggle for me. I can follow, but conversation initiation and behaving in a cliquish way are things I have difficulty with. I'm out of sync and like to do my own thing. Not that I think that's a bad thing.

I am willing to subscribe to the whole Geek culture thing though whatever my brain structure, because I definitely am a Geek.

Funnily enough, when people said that I "suffered" from AS, I suffered because they ostracised me and stigmatised me for having the label. In the right environment, I can thrive on my character traits and have jolly good eccentric fun. I only "suffer" if people expect me to suffer! I only "suffer" if people expect me to hyper-socialise in exactly the same way that they do. I thrive when I'm accepted and included as I am.



Very wise words indeed.

I've found these forums useful because many of the people on here have similar socialising issues to me. Some of our experiences do match whoever I really am and whatever's really going on. It's almost scary. There must be something to all of this and I'm intrigued by it all.

Last edited by AmberEyes on 29 Jan 2009, 6:47 pm, edited 1 time in total.

I'm very curious, did or do you have some of the other common symptoms associated with AS?
Poor fine or gross motor skills?
Food aversions, sensitivities to light, sound, touch or other sensory difficulties?
Difficulty understanding jokes and figures of speech?
Difficulty with eye contact?
Formal or unusual speech patterns?
Rigidity (disliking changes in routine etc.)?

Just curious about what lead your parents to believing "the uncertain semi-diagnosis as an incontrovertible fact"? It is unfortunate that they did, and that you felt stuck with an AS label.

I have 2 sons who have been diagnosed with AS. I would hate for them to ever end up feeling like you do now.

From what you described, it DOES sound like mild AS or high-functioning PDD-NOS.

I think for people with AS (especially mild AS), socialization has a lot more to do with your attitude, and less to do with whether you have AS or not.

A person who spends their entire childhood unaware that they have AS will have some rocky parts, no doubt. But they will eventually learn to control their more overt behaviour. They will eventually make friends. They will eventually enter into relationships. They will eventually work. All because they were never told that they COULDN'T.

But the people who I've met in real life that have AS, and were labelled as teenagers or younger; have all developed a defeatist attitude towards society in general. Their teachers and parents told them that they were incapable, and as a result: they are incapable. And for people like these, maybe it WOULD take someone telling them "No, you don't have Asperger's. You're perfectly normal" to get them to come out of their shell. Because they've equated "Having Asperger's" to "being incapable of learning how to interact with society". That seems to be what's happened with you. Your attitude improved, so you finally made friends.

You sound like an aspie in denial. Of course we can learn to make friends. We are normal. That word is just over rated. Even my own doctors say I'm normal but have never said I don't have AS. They can all see I have it. Maybe that's what your therapist meant. She didn't mean you were NT or don't have AS.

Making friends and learning how doesn't mean "Hey congratulations, you don't have Aspergers anymore, you are now normal."

I have an aspie friend who has made lot of friends and hangs out at a bar and they all know he is different and can tell. He just doesn't want to be defined by a label and let it control his life and be isolated. Lot of aspies get on his nerves and will not go to any of the aspie forums because there is "too much whining and complaining and they don't do anything about it to change."


BTW, your profile says Male and you said in your post, "When I was a little girl."

I don't know what it's like to be young and having a diagnosis of AS. Although, I can sympathize because I was very lonely at school, especially high school. I was not diagnosed then but I still had problems with socializing and doing schoolwork.
I'm with Spokane Girl though. My mum once said to me 'you're not different than the rest of us', or something along those lines, meaning that yes I do have AS but it doesn't mean I'm not normal.
My AS can impair me at times, but I don't give up just because a few things are a lot harder for me to do that others have no problems with.
People can get misdiagnosed. I was misdiagnosed with severe depression, fortunately my mum and I were too skeptic to agree to put me on medication. Maybe you are misdiagnosed or not. You really need a second opinion by a specialist in ASD to know for sure.

There's much more we have in common with the rest of humanity than what's different, anyway. I mean... the basic human desires are all there; it's just colored a little differently. You're a human being more than anything else. AS is a different sort of brain but it's more like being Siamese instead of Persian--they're both cats.

I agree.

If you're told you can't do something, you wind up thinking you can't.
If no-one tells you you can't, then you believe you have the potential to do anything!

Who knows how many millions of people (especially older generations) are out there doing okay for themselves and having careers working with their special interests?

Because they were:
A) Lucky with their situation (e.g. their parents having contacts, money, equipment)
B) Accepted for who they were and were in a supportive environment where they could pursue their interests



Exactly.
That's exactly how I view the situation too.

It's like a self fulfilling prophesy.
For example,
If you're a teacher and you tell the kid that s/he is "useless" then guess what?
You're expectations will be fulfilled: s/he will fail every class.
The kid will carry these beliefs with them for the rest of his/her life.

If, however, you give the kid clear expectations and positive, helpful encouragement by saying "you can" instead of "you can't", guess what?
The kid's behaviour and grades will improve.
The kid will be grateful, thank you and remember your words of wisdom forever.
It's called positive reinforcement: sports coaches use it a lot.

Just saying to a kid:
"I believe in you. You're good at... You can do this. I'm here for you. This is what we have to do to get there."

Is so powerful.
Why don't adults say this more often?
Instead of all the counterproductive negativity.

I'm not saying that everyone doesn't have difficulties or issues to overcome, but even so, surely a constructive and supportive approach to these problems would be better than treating someone on the same level as dog excrement?

People would often ask me: "How does it make you feel?'
When perhaps I should have been asking them:
"How would it make you feel if you were talked down to in a condescending way everyday?"

It took someone telling me that I was "normal" and that there was "nothing wrong with me" to motivate me to get off my backside and actually try to take control of my life.

Actually if I'd been told in a balanced, clearly scientifically explained way that AS was a genetic set of traits with advantages and disadvantageous. I'd have cooperated and listened more!

Because everyone (teachers, doctors, aides etc.) were so shocked and afraid when they mentioned the term AS, I mistakenly equated it with having some mysterious incurable disease, as did my classmates. It didn't occur to me until much later that they were just looking at things like my personality traits from the wrong angle. They just didn't or weren't prepared to understand.

That's a good plan to inform people, but I think you should know a few things in return too.

For one, AS of any severity does not make friendships impossible. I, for example, have a lot of friends that I did not get because of common interests or opinions, but because... well, no idea. I just started being friends with them and we've been for several years.

People with AS and other forms of autism are all so different that despite severe impairments some can learn to be better at social interaction - even be real good at it. I've started out moderately bad but I'm currently acing huge parts of social interaction.

Wow, so many replies in one day; I'm impressed!

Poor fine or gross motor skills? No.
Food aversions, sensitivities to light, sound, touch or other sensory difficulties? Don't think so. I don't like loud parties with blaring music, but I don't have a panic attack if I'm at one. As to touch, I love hugging.
Difficulty understanding jokes and figures of speech? Not usually, but sometimes it takes me a while to figure out if someone's being sarcastic.
Difficulty with eye contact? Nope.
Formal or unusual speech patterns? No.
Rigidity (disliking changes in routine etc.)? Kind of. I don't have a cow if I can't sit in my favorite seat, but major changes (like the transition from high school to college) do upset me.

I believe my parents were just looking for an answer to what was wrong with me. And if you think about it, it's very easy to find evidence that confirms our beliefs. I learned this in psychology class; it's called belief bias, I think. Once my parents believed that I have Asperger's, they gathered all these scraps of evidence, like "Oh, when she was 4, she had poor eye contact" or "When she was a toddler, she cried when her favorite toy was lost and her routine was disrupted."

Sorry to hear about your sons, btw. But lucky for them, you don't think about AS the way my parents do.

And yes, I also believe that mild forms of Asperger's should be left undiagnosed. If it's a mild form (like the one I may have), then the person can learn social skills and be fully functional, while remaining blissfully ignorant. There's no need to stick a label on them, which may not be true, and just cause them pain. Severe forms, however, require a diagnosis because people who have full-blown AS will need a lot of help.

Pensieve, that's a great idea (about seeing a specialist in ASD). I forgot to mention that after the therapist, who first came up with the idea, I went to a couple more therapists. One of them said that I don't have it, but I have anxiety and depression. The other one said that at most, I'm borderline, like Callista said. So I don't know, really.

Label or no label, if you aren't sociable, you just aren't sociable.

Label or no label, if others think of you as different, they may treat you differently.

Label or no label, if children think of you as different, they may pick on you.

With a label, for some people it gives a better understanding, for others it gives ammunition to treat you in ways you don't want to be treated.

Having a label lifted from you doesn't change you just as having a label shouldn't change how others should treat you.

Also, welcome to the board.

One thing about therapists though,

most of them only know the bare-bones of AS. Either through just reading the DSM once, or going off of stereotypes.

Since many of them see so many college-aged women with anxiety and depression, it's much easier for them to believe that any given college-aged female patient has anxiety and depression, rather than AS. Some just automatically assume that a patient has disorder X, just because they 'fit the profile' or have a family member that has it.

When I told my own family doctor about my suspiscions, she said "No, you probably don't have it. But here's a place that you might want to check out." And then handed me a link to a website that helped people with AS and various other disorders...but ONLY focused on anxiety, depression and learning disabilities. So I don't know if she thought that I was mistaking anxiety and depression for AS, or that if I thought that I had AS, then it must mean that I have anxiety or depression. For the record, I don't have anxiety, depression, OR a learning disability.

So in conclusion: Take the words of general therapists and general physicians with a grain of salt. They might be great at helping you deal with stress, or diagnosing an ear infection, but don't expect them to know much about ASDs.

I agree with a lot of what blacktea is saying. Social difficulities (in all its varities - social phobia, social anxiety etc.) and strong shyness are not Aperger's syndrome traits per se (they can come about comorbid). Yes, these traits/disorders can lead to difficulty in life tranisitions, a possible need for a routine (to keep familiarity with surroundings, otherwise you have to go through the painful process of making sense of a new world and confusing environment again)...but this is different than the autisitic need for routine and familiriaty of an evironment.

If you have the above and fit most of the INTP characterisitics e.g. difficulty in shifting attention, over analytical + obsessive thought patterns, poor executive functioning, detachment from surroundings, cannot express emotions and feelings (finding them difficult to express), pacing and other tics, strong interests, lack of 'common sense', cannot keep consistent and 'normal' eye contact when in coversation, over stimulated by surroundings [to the extent where the surroundings can be surreal (especially when lacking enough sleep)] ... it can be lead the observer to view a possible case of asperger's or at least a phenotype...

Let's start a discussion, how is asperger's different from INTP+social anxiety+social phobia+OCD? Could the key difference be in the way the diagnositic aspie traits are triggered, rather than the trait itself?

Maybe I am being a bit rhetorical with that question, but I still want to see what everyone thinks...

Certainly not all people with AS have Social anxiety/phobia and OCD. I have no anxiety when approaching people, it's just that I'm not very good at making friends and most people remain at the 'acquaintance' level for me. Because when I DO try and make 'friends' officially, some people think I've come on too strong and they back away. I lack the instinct of knowing when and how to do that, and I'm also fairly bad at social reciprocation. So, even if a person gives me their phone number, I often forget to give them mine unless they prompt me.

OCD is much more 'abnormal' in nature than AS desire for routine. While an AS person might prefer to do things a certain way, the routines tend to be understandable from an NT point of view. Something like: "I get up, have a shower, brush my teeth, eat breakfast, brush my hair, put on clothing, make coffee, get out the door, catch the subway to work" seem very normal. So what if the person really doesn't like brushing their hair before they've brushed their teeth?

OCD is much more precise, repetative in nature, patterned and is usually accompanied by feelings of paranoia or guilt. For example, a routine for an OCD person might be: "Get up, take a shower, step out, get back in to take another shower, wash my hair twice in the second shower, get out, wash my hands 5 times, brush my teeth 4 times, comb my hair 3 times, get dressed, take off clothing and put on another set, eat breakfast, check the oven 4 times before I leave, go out the door, come back in to double-check my apartment, take the elevator downstairs, come back up to double-check the oven another 4 times, go back downstairs, take the subway to work. Because if I don't do this, I'll get sick and my apartment will catch on fire."