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Zinnia86
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23 Jan 2019, 12:33 am

Hi. Sorry if this is the wrong part of the forum to post this but I wasn't exactly sure where to put it. For the sake of context, I am a woman in my early thirties and I have suspected for years that I might have some Asperger's tendencies. I recently read the book Aspergirls by Rudy Simone and I never imagined that the book would so closely describe my life experience! I identify with 90% or more of what was in there (my main points of disagreement were the fact that I do like to do handicrafts and cook, but I think that's because those things are like art for me rather than just socially acceptable womanly pursuits). I am feeling...I don't know...a lot about it, I guess. It's kind of messing with my head to think that this "syndrome" may define all of the things that I love best and hate worst about myself. I keep hearing that other people feel comforted by the diagnosis but I'm definitely not there yet.

Two questions: 1. Should I bother getting a formal diagnosis, or have you found that it's enough to just believe that you have Asperger's (or ASD) tendencies? Looking back, I think that my Asperger's-ness probably has negatively impacted me at work in the past, but I'm not sure that it would have made any difference if I had had the diagnosis anyway. Has it made a difference for any of you? 2. When and in what context do you tell other people? I've been thinking and feeling a lot of different things since I read Aspergirls, so I've tried telling some people I know about it, with mixed results. Today I happened to tell a whole group of people (9 or so) at once and now I'm feeling really exposed and regretting it, but it's been weighing on me and I don't know if I would feel even worse if I hadn't said anything...blegh. If anyone has advice it would be appreciated.

Thanks.



ASPartOfMe
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23 Jan 2019, 3:45 am

Professional diagnosis can validate one's suspicions and possibly make one eligible for disability benefits or accommodations at work.

A professional diagnosis is often expensive and difficult to obtain for an adult female due to the "traits" used to diagnose are based on boys. If you go that route it is of utmost importance to find a clinician who understands how Autism presents in women. These clinicians can be hard to find.

Many self diagnose before getting a professional diagnosis.

Based on reading posts from people on wrong planet who have disclosed the reaction to these disclosures has varied widely. People disclosing self-diagnosis are less likely to be believed then those who disclose a professional diagnosis but disclosing a professional diagnosis is far from a guarantee that you will be believed.

The realization that one is autistic often provides an explanation of why things happened in your life the way they did. Knowing you were "born this way" is often better for one's self esteem than the belief that one's problems are solely the result of being a "jerk" or a "retard". Knowing yourself better can help in preventing you from making mistakes


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Piobaire
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23 Jan 2019, 5:43 am

Quote:
1. Should I bother getting a formal diagnosis...

If there is some tangible benefit; e.g. a student diagnosed with ASD gets additional tutoring or counseling, sure. I was diagnosed when I was over 50, incidental to treatment for other mental health disorders. While it explained much of my life experience (particularly childhood and adolescence), it didn't provide any actionable information or additional accommodation or benefit, therefore while interesting, I didn't find it useful.

Quote:
2. When and in what context do you tell other people?

I limit such discussions exclusively to my mate, and mental health professionals. I learned long ago not to try and explain myself to the rest of the world. It's generally been my experience that when someone hears words like "depression", "PTSD", or "Asperger's", they immediately stop hearing anything else I'm trying to say; rather than listening, they're busy recalling some idiotic made-for-TV movie they've seen, and now considering themselves experts on the subject, leap to all sorts of thoroughly erroneous conclusions; usually as deeply prejudicial as they are ill-informed. Rather than try to explain my experience to those who have no frame of reference for understanding it, I could save myself a great deal of time, aggravation, and embarrassment by simply taking an indelible black marker and writing CRAZY across my forehead in 3" letters. With the vast majority of people, this would have precisely the same effect.



Benjamin the Donkey
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23 Jan 2019, 7:09 am

As I'm high-functioning enough these days to "pass" most of the time, I tell almost no one. My family and a couple of very close friends (who already had a high opinion of me) are the only ones so far. Most people regard me as merely eccentric.


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Piobaire
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23 Jan 2019, 11:20 am

Benjamin the Donkey wrote:
As I'm high-functioning enough these days to "pass" most of the time...Most people regard me as merely eccentric.

You must be quite wealthy to be thought eccentric. In my income bracket, I'm simply regarded as weird.



Benjamin the Donkey
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24 Jan 2019, 6:38 am

Piobaire wrote:
Benjamin the Donkey wrote:
As I'm high-functioning enough these days to "pass" most of the time...Most people regard me as merely eccentric.

You must be quite wealthy to be thought eccentric. In my income bracket, I'm simply regarded as weird.


No, I'm just over 50, so people usually call me eccentric to my face. Behind my back I'm sure they refer to me as weird. As they did to my face when I was a kid.


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SharkSandwich211
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04 Feb 2019, 2:54 pm

For me, getting a DX has been a mixed bag.

On the one hand, it gave me the reasons why I have struggled. So through the lens of retrospect I could at least make sense of those situations. I have had my dx for over two years now, and I am having difficulty accepting the idea that there is something that I cannot change about myself. I agree with the dx, but it took watching other people talk about Asperger’s and how it effected their lives to really drive it home, because I have struggled in the same ways and still do.

What my dx has taken away from me is the convienience to dismiss problems or differences in my thinking compared to others as “oh it’s just them” or “ this guy is an idiot”. It has destroyed what confidence I did have in my abilities, because I am constantly now wondering .... am I perceiving this the right way, what am I missing, am I trying to control the situation, maybe I really do work a little slower, ahh this is why I have to read things 3 times before it sinks in, or this is why it takes me 3 times as long to learn a drum part or bass guitar part, the list goes on and on. I am consumed with the daily reminders of what I now know to be attributed to AS. When you don’t know, you don’t know and there really is a bliss in that. Regardless though, it still causes challenges in your life, but the “not knowing” allowed me to be dismissive. (But after a lifetime of bad social interactions, I finally figured out that the common variable in all of my challenges, was ME!)

Once I found out I tried to get various therapies such as social skills help, and OT for sensory issues. My experience with a Psychologist on the social skills front boiled down to him trying to teach me to be NT. He suggested taking in current news topics and sports stats, etc. So basically I either had to forfit who I was to relate to others or I could just not relate to others and be true to myself. I chose to be true to myself and not become “the actor” in those situations. OT in not available to me, my insurance wont cover it. (Although Virginia has just passed a law removing the age cap for ALL individuals with ASD). So there is hope on that front.

As for telling people, I do about 90% of the time. Here is why I do... I feel most peoples points of reference as to what Autism truly represents is limited. I know there are other adults like me that struggle day in and day out, and don’t know why. I feel if I can help someone update their point of reference then that is a good thing. I have gotten the “you don’t look autistic” and “but you are so well spoken” etc, etc. But what they don’t see is the dysfunction of my life, and the co-morbids that go with it, and my sensory issues, and troubles with theory of mind. I think most people are used to the idea that disabilities are visible. Unless I am having a meltdown, I pass as normal.

What I have experienced in the disability community for me has been the saddest. As a parent advocate, adults see me as that at first, when I tell them that I am also a self advocate there has been a noticeable shift in how people have talked to me. My perception is that they almost automatically expect less of me or they have seemed really surprised that I have done some of the things that I have done. Not just with other parents with children on the spectrum, just adults in general too. It makes me less inclined to disclose it because in my mind, I have done more than most people have done in a lifetime and I am the one with a disability. (Sometimes it makes me wonder what their excuse is). But I have felt judged by other adults within the autism community, and that was the last place that I expected it. I :(

As for work situations...that would be a case by case basis. Currently unemployed...so not really an issue at the moment.

Sorry this is so long. I feel a strong urge to share my experiences with other adults that are coming to or have already come to the conclusion that they might have Asperger’s. It helps me feel connected in some way, which is the complete opposite of how I feel with every other facet of my life.

Kind regards
Shark



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04 Feb 2019, 5:25 pm

SharkSandwich211 wrote:
For me, getting a DX has been a mixed bag.

On the one hand, it gave me the reasons why I have struggled. So through the lens of retrospect I could at least make sense of those situations. I have had my dx for over two years now, and I am having difficulty accepting the idea that there is something that I cannot change about myself. I agree with the dx, but it took watching other people talk about Asperger’s and how it effected their lives to really drive it home, because I have struggled in the same ways and still do.

What my dx has taken away from me is the convienience to dismiss problems or differences in my thinking compared to others as “oh it’s just them” or “ this guy is an idiot”. It has destroyed what confidence I did have in my abilities, because I am constantly now wondering .... am I perceiving this the right way, what am I missing, am I trying to control the situation, maybe I really do work a little slower, ahh this is why I have to read things 3 times before it sinks in, or this is why it takes me 3 times as long to learn a drum part or bass guitar part, the list goes on and on. I am consumed with the daily reminders of what I now know to be attributed to AS. When you don’t know, you don’t know and there really is a bliss in that. Regardless though, it still causes challenges in your life, but the “not knowing” allowed me to be dismissive. (But after a lifetime of bad social interactions, I finally figured out that the common variable in all of my challenges, was ME!)

Once I found out I tried to get various therapies such as social skills help, and OT for sensory issues. My experience with a Psychologist on the social skills front boiled down to him trying to teach me to be NT. He suggested taking in current news topics and sports stats, etc. So basically I either had to forfit who I was to relate to others or I could just not relate to others and be true to myself. I chose to be true to myself and not become “the actor” in those situations. OT in not available to me, my insurance wont cover it. (Although Virginia has just passed a law removing the age cap for ALL individuals with ASD). So there is hope on that front.

As for telling people, I do about 90% of the time. Here is why I do... I feel most peoples points of reference as to what Autism truly represents is limited. I know there are other adults like me that struggle day in and day out, and don’t know why. I feel if I can help someone update their point of reference then that is a good thing. I have gotten the “you don’t look autistic” and “but you are so well spoken” etc, etc. But what they don’t see is the dysfunction of my life, and the co-morbids that go with it, and my sensory issues, and troubles with theory of mind. I think most people are used to the idea that disabilities are visible. Unless I am having a meltdown, I pass as normal.

What I have experienced in the disability community for me has been the saddest. As a parent advocate, adults see me as that at first, when I tell them that I am also a self advocate there has been a noticeable shift in how people have talked to me. My perception is that they almost automatically expect less of me or they have seemed really surprised that I have done some of the things that I have done. Not just with other parents with children on the spectrum, just adults in general too. It makes me less inclined to disclose it because in my mind, I have done more than most people have done in a lifetime and I am the one with a disability. (Sometimes it makes me wonder what their excuse is). But I have felt judged by other adults within the autism community, and that was the last place that I expected it. I :(

As for work situations...that would be a case by case basis. Currently unemployed...so not really an issue at the moment.

Sorry this is so long. I feel a strong urge to share my experiences with other adults that are coming to or have already come to the conclusion that they might have Asperger’s. It helps me feel connected in some way, which is the complete opposite of how I feel with every other facet of my life.

Kind regards
Shark


I think you should drop any psychologist that tries to make you into an NT. Not that learning social skills is a bad thing. These skills are tools, no more, no less. They should not be a goal.

You have run into a phenomenon that has been noticed, that there is a difference between the greater Autism community and the Autistic community. Although non autistics are allowed to be members of Wrong Planet is an autistic community. The Autistic community consists of off and online support and meetup groups, Bloggers, and vloggers(video bloggers), Autistic rights organizations such as ASAN and more.


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My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person. - Sara Luterman


Prometheus18
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04 Feb 2019, 5:33 pm

I would never share my diagnosis or any other personal details except on a need-to-know basis.



JPER1980
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14 Feb 2019, 10:44 am

I received a diagnosis fairly recently. I think the most useful thing about pursuing a diagnosis was actually that (in the run-up to the assessment) I was trying to write a sort of 'case history' for myself and this made me think about myself in more detail than I have before (e.g. some of the things I find easier/harder, some of the more structured way approach things, etc).

The main difference since it becoming clear that I have Asperger's is that I am trying to be kinder to myself about the things I find harder in life, or about some behaviour which is not completely 'normal' but that makes life feel nicer. However a person doesn't need a diagnosis to be kinder to themselves. Everyone has things they struggle with and it seems we all beat ourselves up (unnecessarily) over our 'imperfections' at times.

Getting a diagnosis can give clarity (confirming what someone already thinks), but can be very unsettling (as they see aspects of their life in a new light).

I didn't need a diagnosis for myself in a practical sense (as my life is quite settled in practical terms). However my oldest child was diagnosed a while ago and I began to feel that I needed to have some clarity about myself in order to know how much of my own experience I could draw on when advising them.

I think my main piece of advice at this point would be don't feel you have to rush. Maybe read some more books (so you have some more perspectives on common AS features), think about what you would want to get out of a diagnosis (and whether a diagnosis would actually give you that), and above all be kind to yourself.



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14 Feb 2019, 5:21 pm

Zinnia86 wrote:
Two questions: 1. Should I bother getting a formal diagnosis, or have you found that it's enough to just believe that you have Asperger's (or ASD) tendencies? Looking back, I think that my Asperger's-ness probably has negatively impacted me at work in the past, but I'm not sure that it would have made any difference if I had had the diagnosis anyway. Has it made a difference for any of you?


For someone in their early thirties getting a diagnosis has limited advantages. The main one would be for confirmation that you are in fact on the spectrum. This can help give some validation and relieve some guilt you may have felt from not being quite like others. It may not be an instantaneous feeling though and that's okay. When it was first mentioned to me that I may have Aspergers I looked into it, thought it was me but I wasn't otherwise ready to deal. So I dropped it for a while. When I came back to looking into it again I was ready to embrace it and that's when I realized so much of what I had gone through was not my fault. That gave me comfort, and anger at other people but that's something else lol

Depending on where you live getting diagnosed could present some difficulty. There really isn't a set universal test for Aspergers. You could go to a couple places and receive a little bit different test. A place I went to ran me through things but covered virtually NOTHING of my past. Another hiccup is that much of the criteria is still set on the male example. I believe the UK testing is a bit more comprehensive but getting a diagnosis is more difficult (hoops to jump through).

There is another route though (in the US anyway). This would be to attain a mental health professional if you don't have one already. To have enough visits with them to establish a baseline, and engage in discussion about the possibility and likelihood of being on the spectrum. That profession may be willing to give you a diagnosis without tests - to be willing to say that you do have Autism. This is how I got my diagnosis.

If I had gotten a diagnosis earlier it probably would have made some difference, I would have been entitled to a certain amount of help in school instead of having to fight tooth and nail for anything. Schools in particular can be really suborn that's when having the testing results can be a help. But once in adult hood *I* don't find it (having testing results) necessary.

Quote:
2. When and in what context do you tell other people? I've been thinking and feeling a lot of different things since I read Aspergirls, so I've tried telling some people I know about it, with mixed results. Today I happened to tell a whole group of people (9 or so) at once and now I'm feeling really exposed and regretting it, but it's been weighing on me and I don't know if I would feel even worse if I hadn't said anything...blegh. If anyone has advice it would be appreciated.


I told some I'm friendly with about it when I was going through the identifying of it. It was sort of an extension of a conversation of "What have you been up to?" I make no secret of it on FB, though I suspect some people might just think I'm advocating for it vs having it, heh. Times I've talked to people that may be struggling with something, I often us my own experiences as examples when I'm trying to offer advice or just give them some solidarity - I will often disclose that I have Aspergers then. People ask me questions as to why I do or don't do something. For instance someone once commented that they always have to say high first, that I never would do it first. So at that time I explained I believed that had to with my Aspergers and the fact that it's not a social etiquette thing that comes naturally to me (After that I have tried to make more effort to say it first.); I'm more of speaks when spoken to person. I typically don't tell other people, only when needed. I don't have a job but I expect if I were to interview for one it's something I would likely include also. But a random co-worker? or service person? I don't feel any reason they'd need to know unless they wanted to take a genuine interest in getting to know me.


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Jennadesigns
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16 Feb 2019, 6:34 pm

I just discovered I'm autistic, at the age of 40. I have spent my entire life being weird/different/odd and struggling socially despite being very intelligent. I have struggled with executive function my entire adult life and it has only gotten worse as I've gotten older. I have been in treatment for treatment resistant depression, anxiety and ADD for 25 years, with only relatively good "control" of my symptoms since six years ago when my psychiatrist and I stumbled on a combination of medication that seems to work well for me. It helps me mask my autistic traits, but during times of stress, they come right back even with medication. I recently relocated out of state and since moving have had a number of stressful events happen, including my family being threatened by a psychotic neighbor and having to get a restraining order against him and go to court and testify (still ongoing) and my house burned down, a total loss two weeks ago... needless to say, I am having a huge autistic issue with change, and sensory overload being cooped up in a hotel room with my husband, two young daughters and large dog. It was in the middle of all of this that it dawned on me that I was on the spectrum. Everything I've read and the online tests I've taken put me on the severe end right now. I have an intake appointment with a psychiatrist next week to pursue a formal diagnosis. Having that will give me a sense of understanding about myself that has alluded me my entire life. It will validate me and that alone is worth it.

I have blogged for the last 11 years, sharing my story about being a survivor of childhood sexual abuse and my mental health struggles, as well as day to day life ... and I am debating sharing this publicly with my readers (I have a following of about 2,000 visitors a day). Still undecided about when to do that.