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QuirkyCookie
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18 Jan 2016, 5:14 am

Hello!

I have talked to a few people close to me about the possibility of having AS and have tried to show them some charts of traits that I have found on the internet (one written by a person who has AS and another written by a psychologist (or seems to be that way)). I did this because it felt like such a relief when I found out about the female traits in AS because it helped me to understand myself and it made my life and everything that has happened in my life make a lot more sense! Now I understand a ton of things that I didn't quite understand before, and I felt so much relief from that! I am currently waiting for the discussion with the therapist to look into things and so on.

Anyway, my question is: I told my close people about possibly having AS and they did not believe me (and refused to look at the charts I printed off). Does anybody have a similar experience? How does one deal with knowing in your heart that you are right and seeing the people you love not wanting to listen to you or believe in you (when you would have listened or believed in them in the first place if it had been the other way around)?


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EzraS
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18 Jan 2016, 8:12 am

Well it sounds like what you are describing is a very personal perspective thing for you, that may not be at all recognizable to those who know you well. A lot of people view autism as an unmistakably severe condition. I mean maybe to them it would be like you telling them you suddenly just discovered you are "mentally ret*d" or whatever. Do you have anything from your childhood to show them? I mean like tests made for neurological issues, behavior issues recorded in your school records, need for special education etc? I mean I have a file that's like 6 feet thick.



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18 Jan 2016, 8:30 am

Nobody believed me at first. It was assumed by all whom I had told, including a therapist, that I was imagining I had it or was a hypochondriac.

It's immediately obvious to almost everyone that I'm odd. I do poorly in social situations. I'm blunt, do or say inappropriate things. Almost no eye contact. One or two people have admitted these things to me, otherwise I wouldn't have realized how bad I am. Everyone else has known me my whole life and is used to my eccentricities.

My sensory issues are terrible, my obsessions, perfectionism, poor executive functioning, and need for routine interfere greatly with my life. Yet I wasn't taken seriously at first.

But I was diagnosed regardless of what those others believed. So if you think you have it, try getting a diagnosis. Then you'll know, at least.



Lupine12
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18 Jan 2016, 8:35 am

Yes Quirky that is my experience and therapy was a huge mistake!! The man did not listen to me at all !



Lupine12
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18 Jan 2016, 8:40 am

What would diagnosis do? That therapist accused me of trying to get disability which was not the case at all!! I worked then for a company and work now on my own! I am not on any assistance of any sort and if I don't have the money then I just go without ... That includes food! I don't want any government help ever! I do it on my own or I don't . There is no help for me as I will not yield to all the misdiagnosis and the consequences of those when it comes to my career! They say they can not discriminate but be real it happens every day!



black0441
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18 Jan 2016, 8:52 am

QuirkyCookie wrote:
Anyway, my question is: I told my close people about possibly having AS and they did not believe me (and refused to look at the charts I printed off). Does anybody have a similar experience?


That's what happened to me too. I told them I was going to get diagnosed, and in the meantime, they could either accept what I was saying, or wait until I had the diagnosis and accept it then.

Honestly, I couldn't really blame them-I've been faking being NT for my whole life, hiding every autistic behavior wherever possible. It was a strange experience that they believed the lie for so long, but when I finally came clean and told them what was going on-THAT was when they decided I was losing it.

I really have no idea what they think now that I've actually been diagnosed. As long as they don't tell me they know what's going on inside my head better than I do, I'm OK with that.


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Mobers
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18 Jan 2016, 9:03 am

Without you actually being diagnosed, why would people believe you?
As far as they are concerned, you have decided you have a neurological difference based on a couple of things you read on the internet, plus this difference could be something that would potentially require them to excuse behavior that they would otherwise hold you responsible for. Announcing that they should take your inexpert opinion as sufficient support for the "fact" that any failures on your part to hold up your end of the social contract have a medical origin was unlikely to be met with any benefit to you.

They probably don't believe you because to them you are functional/"normal" enough, and they think you'd have more obvious impairment if you were on the other side of any line that mattered.



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18 Jan 2016, 9:23 am

QuirkyCookie wrote:
Now I understand a ton of things that I didn't quite understand before, and I felt so much relief from that! I am currently waiting for the discussion with the therapist to look into things and so on.


That sounds like a very positive thing for you, no matter what people believe or how you are ultimately diagnosed. I would focus on whatever benefit this research is bringing you, regardless of people's reactions.

QuirkyCookie wrote:
Anyway, my question is: I told my close people about possibly having AS and they did not believe me (and refused to look at the charts I printed off). Does anybody have a similar experience? How does one deal with knowing in your heart that you are right and seeing the people you love not wanting to listen to you or believe in you (when you would have listened or believed in them in the first place if it had been the other way around)?
If the close people are your family or an intimate partner, then they may have powerful reasons to want to believe that it isn't true. In any case, you while you can be certain the insights into your behavior are helpful to you, you can't force other people to accept your self-diagnosis. You won't even be able to force them to accept an official diagnosis from a licensed professional--though that is the only way to get accommodations from work or school if you need them.

If you don't need accommodations, then I would relax about the response of people around you. If they love you, the will recognize the importance of this to you and engage with it for that reason. Otherwise, let it go--you can't change the thoughts in other people's heads!

I hope you find peace with this and continue your research and self-discovery in a productive way. :D



QuirkyCookie
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18 Jan 2016, 9:44 am

Yigeren wrote:
Nobody believed me at first. It was assumed by all whom I had told, including a therapist, that I was imagining I had it or was a hypochondriac.

It's immediately obvious to almost everyone that I'm odd. I do poorly in social situations. I'm blunt, do or say inappropriate things. Almost no eye contact. One or two people have admitted these things to me, otherwise I wouldn't have realized how bad I am. Everyone else has known me my whole life and is used to my eccentricities.

My sensory issues are terrible, my obsessions, perfectionism, poor executive functioning, and need for routine interfere greatly with my life. Yet I wasn't taken seriously at first.

But I was diagnosed regardless of what those others believed. So if you think you have it, try getting a diagnosis. Then you'll know, at least.


Hi Ezra,

I am too "old" to have been diagnosed as a child or youth. When I was a kid/younger there was no diagnosis for autism or Aspergers! there were kids with it everywhere,but they were not known to have anything at all. Basically the only thing I have felt is that I am weird, odd and don't fit in, and that I see and hear everything etc, have no friends IRL, friends leave me for no reasons, have a high education but problems finding job, have a job I love that is special needs friendly (I have a particular diagnosis besides Aspergers/whatever), etc.

I felt sad that those who are supposedly my close ones, do not believe, when I saw the fact sheets and understood instantly why I had felt like an alien my whole life. I cannot change their mind, but I will try to get a diagnosis officially. In my heart I really know it, but I would like it to be on paper too, simply because next time somebody tells me I am weird, I can say no, I am not weird, I have this...and then there is finally an explanation for all the social mistakes etc that I have made (and still make) in life.

Kinda hard to explain, but I hope you get what I am trying to say :)


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QuirkyCookie
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18 Jan 2016, 9:47 am

Yigeren wrote:
Nobody believed me at first. It was assumed by all whom I had told, including a therapist, that I was imagining I had it or was a hypochondriac.

It's immediately obvious to almost everyone that I'm odd. I do poorly in social situations. I'm blunt, do or say inappropriate things. Almost no eye contact. One or two people have admitted these things to me, otherwise I wouldn't have realized how bad I am. Everyone else has known me my whole life and is used to my eccentricities.

My sensory issues are terrible, my obsessions, perfectionism, poor executive functioning, and need for routine interfere greatly with my life. Yet I wasn't taken seriously at first.

But I was diagnosed regardless of what those others believed. So if you think you have it, try getting a diagnosis. Then you'll know, at least.



Thank you, I am so glad to know I am not alone. I have some issues with sensory stuff, like going to the supermarket OMG every sound and person is in my ears/eyes...and so much to see and hear and everything Gosh!! !!

Plus I think one thing in my head and then another thing comes out my mouth...for example a friend saw me outdoors once and (since it was Christmas at the time) said Happy new year (because we were closing in on new years eve) and I said Merry Christmas when in fact I had meant to say Happy new year (I actually said the words happy new year in my mind but the others came out my mouth)...I felt so very stupid....Things like this happens all the time, unfortunately.


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QuirkyCookie
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18 Jan 2016, 9:58 am

Thanks everybody for your responses!! !

I am sorry to hear of those who had a bad experience with therapists! I have no idea how my experience is going to be, because we have not talked yet (therapist and I). Will let you know once the therapist has been in touch, at the minute I have a few days to wait until that happens. But, I hope they can hear me out.

I hope that I have a good experience with the therapist, but thanks for the heads up, will definitely keep this in mind.

I do not have any formal diagnosis, have just realised it seems to be AS or could be AS from what I have read regarding female traits of Aspergers. It fits very well with me! In fact, the first time I read it it felt like they had known the story of my life since childhood, all the things that happened to me when I was a kid. I am 36 years old, too old to have been diagnosed as a child, because there was no such diagnosis when I was little. So, I have only got diagnosed with OCD and GAD (which apparently are co-morbids of AS) and then have been told that I am being silly or hypochondriac by those who are close to me.

I cannot make people believe, online or offline, of course. The point is not to make anybody believe in me, I just wanted to know if others have had that same experience. Even with a diagnosis I might never make anybody believe me. However, that is not the point of getting a diagnosis either. I just want to know that what I saw in the female traits of AS that fits so well with me is an actual diagnosis. I am doing the diagnosis discussion for myself first and foremost.

If I get any help out of it, then great, and if not, then great too. I am not out to get benefits or whatever. I have a job and I can do it fairly well, but I would just like to be able to explain to my boss about why I get so tired from social interaction, why I can't do all the tasks really fast and why I sometimes miss some things while I have done other tasks (miss some details) and why I feel like an alien all the time, why I have always felt like I did not fit in and why when I go to the store I see every person there in detail and why I hear every conversation, jingle and you name it...and why it makes me feel extremely overwhelmed to go out with friends, why I love staying at home and so on.

I don't want anybody's money, because I have a salary of my own. So, I can take care of myself. However, I just want to know on a piece of paper that what I know in my heart is also real, that the things I felt and experienced in my childhood and in my youth and also every other day of my life regardless of my age have been real. Basically that is what a diagnosis would do, to let me know that these experiences of mine were based on having something.

When I went to see a doctor at age 12 because I was fainting every day in school from all the sensory overload (does not happen too much anymore), the doctor just said I had hormones and wanting to get attention (NO!). Since then, I have not dared to talk about this with anybody. That was ages ago, but now there is more information out there and also more understanding (to some extent) so that makes it easier to find info and to feel more OK after reading that everything you have felt in life might be because of AS (a real thing, rather than just want attention like the doctor was saying back then).

I do my social stuff fairly well, I am good at one on one talks, group presentations but suck at group talks (social interaction with many at once), can hold eye contact so-so, feel overwhelmed with too much sound/sight, love to touch everything and so on.

So, that was the reason for this post, to see if I am alone in not being understood by others or believed by others because I have been so good at hiding my issues for so long! :D hehe it seems from your responses that this is the case.

Anyway, thanks for all your responses :) I will let you know what happens whenever I get diagnosed and what the actual diagnosis is. I am learning towards AS from reading these fact sheets that so well mirror my life experiences, but who knows maybe the doctor can find something else too or instead? We will have to wait and see.

Take care :)

QuirkyCookie.


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Last edited by QuirkyCookie on 18 Jan 2016, 10:04 am, edited 1 time in total.

BeaArthur
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18 Jan 2016, 10:03 am

My very fine therapist was startled that I was planning to pursue this, and did not think it applied to me. However, I was not allowing her to be my gatekeeper - I started my journey to diagnosis with my primary care doctor and my insurance company for referrals.

And then when I discussed my results with her, she was more accepting.

This was the same therapist who just retired, so you see, her training occurred quite long ago and before Asperger's became a household word (mid 1990s on).

She was still a very fine therapist with whom I had a great rapport. But I point this out to show how not every therapist knows bupkis (doodlysquat) about autism. So if your therapist pooh-poohs it, don't write the therapist off if they are otherwise satisfactory to you... instead, educate them!


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QuirkyCookie
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18 Jan 2016, 10:06 am

BeaArthur wrote:
My very fine therapist was startled that I was planning to pursue this, and did not think it applied to me. However, I was not allowing her to be my gatekeeper - I started my journey to diagnosis with my primary care doctor and my insurance company for referrals.

And then when I discussed my results with her, she was more accepting.

This was the same therapist who just retired, so you see, her training occurred quite long ago and before Asperger's became a household word (mid 1990s on).

She was still a very fine therapist with whom I had a great rapport. But I point this out to show how not every therapist knows bupkis (doodlysquat) about autism. So if your therapist pooh-poohs it, don't write the therapist off if they are otherwise satisfactory to you... instead, educate them!


Thank you! Yes indeed, I will do that.

I think the main people that cannot believe right now are those close to me (not therapist). That's probably because I seem too NT for them (I learned to hide a lot of my issues or pretend they are not there and never talk about it). However, I will definitely keep it in mind!

Thanks so much for all the comments, I really am glad to hear what you all say :) xx


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18 Jan 2016, 11:11 am

Huge misinformation by posters here. First of all the OP did not self diagnose, she told people she POSSIBLY has AS. A formal diagnosis maybe helpful in getting some people to believe you, it is far far from from a guarentee that you will be believed. As I mentioned in a bunch of other threads there are a whole bunch of labels these days for what used to be considered charactor flaws. So people think doctors and drug companies are making these labels up for profit and that people who use these labels are using them as an excuse. Because of the skyrocketing of Autism prevalence rates and Autistic and Aspie becoming widely used as colloquial terms autism/Aspergers has become symbolic of the perceived use of labels as an excuse.

The above bieng said it should not matter if a person is exploring the possibility they are on the spectrum, have self diagnosed, or have been proffessionally diagnosed, they should be be supported and believed until proven otherwise, not automatically suspected of fakery or using the Aspergers as a crutch.

To the OP, you got to do what you got to do to find out who you are or get an explanation. Obviously this is going much more difficult if you are not believed but it has to be done.


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QuirkyCookie
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18 Jan 2016, 11:24 am

ASPartOfMe wrote:
Huge misinformation by posters here. First of all the OP did not self diagnose, she told people she POSSIBLY has AS. A formal diagnosis maybe helpful in getting some people to believe you, it is far far from from a guarentee that you will be believed. As I mentioned in a bunch of other threads there are a whole bunch of labels these days for what used to be considered charactor flaws. So people think doctors and drug companies are making these labels up for profit and that people who use these labels are using them as an excuse. Because of the skyrocketing of Autism prevalence rates and Autistic and Aspie becoming widely used as colloquial terms autism/Aspergers has become symbolic of the perceived use of labels as an excuse.

The above bieng said it should not matter if a person is exploring the possibility they are on the spectrum, have self diagnosed, or have been proffessionally diagnosed, they should be be supported and believed until proven otherwise, not automatically suspected of fakery or using the Aspergers as a crutch.

To the OP, you got to do what you got to do to find out who you are or get an explanation. Obviously this is going much more difficult if you are not believed but it has to be done.



Thank you so much! Yes, I am doing this for myself first and foremost, and whatever other good stuff comes from it, then hooray. The main good stuff that came from it so far has been understanding myself more, and stop to feel like an alien because finally I understood myself and why I react like I do and so on.

In my heart I felt the information that was provided regarding females on the spectrum was definitely about me, but I also want to have an official diagnosis because I want to know that it was not just in my heart, but also a reality.

I have been told when I was a kid that I have to grow up, stop being sissy and stop being a little girl and act like a woman and so on, many years people have told me that my way of being is wrong etc etc, so I just want to understand why I am the way I am, and to be able to give a response to people who act rudely towards me, rather than just saying nothing.

Whether they believe or not is actually less important in the end, but I wanted to see if others have similar experiences with other people. It seems that many do and it is both sad and good at the same time. Sad because others have that experience and good because it means I am not alone. Same as a possible AS diagnosis means I am not alone in being me, there are others out there like me.

Yes, I know what you mean, I have noticed too that many people today are getting diagnosed with AS, but I think that is because many of us have been around for a long time, but in a time when there was no such diagnosis! So of course there was no way to explain what was going on inside us! However, now we have more information, more diagnosis chances and more knowledge in therapists, so we hope that means people can get a correct diagnosis.

So far, I am half AS, because I believe it in my heart, and have seen myself in the description of the female Aspie. I just hope the therapist can see the same thing as well.

I will let you guys know what happens :)

I have come to the conclusion that whether people believe or not, I still have to do this for myself. It saddens me that those who do not believe are close to me, but in the end, there is nothing that can be done about it. I still need to find out that what my heart has felt when reading these AS traits things is real also in a logical way, not just an emotional understanding.

Hopefully this makes sense.

Thanks to all =)


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ASPartOfMe
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18 Jan 2016, 12:06 pm

It makes a lot of sense. You are in a relatively good place. This did not happen by accident, you got yourself here. I wish continued success in this journey of self exploration.


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