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If I don't have AS...then how will I define myself?

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anneurysm
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02 Jan 2011, 1:28 pm

anbuend wrote:
anneurysm wrote:
As well, I believe that although my brain is still inherently hard-wired for autistic like behaviours, that yes, I have become so efficient at un-learning them that I no longer require assiatance with the things I needed when younger, and that there is no way I could revert back to being fully autistic as many of my learned bahviours have become so natural.


There's also no way you could know this for sure at this time in your life. It may seem true for now but what about after decades of work and other responsibilities take their toll? You just can't be so sure.


I definitely agree, due to the fact that I have attempted many times to revert back into an autistic functioning and acting state and nothing becomes any different. As an example, I focus better in conversations when I don't think about where to look at a person, but when I inquire about the placement of my eyes afterwards after I try not to focus on them, people say they don't notice anything different. Sometimes I tend to think I have autistic wiring, though, due to social skills and nuances not coming as naturally to me as they do to others, but then again, it's just a hypothesis and there is no way I could know this for sure.


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Given a “tentative” diagnosis as a child as I needed services at school for what was later correctly discovered to be a major anxiety disorder.

This misdiagnosis caused me significant stress, which lessened upon finding out the truth about myself from my current and past long-term therapists - that I am an anxious and highly sensitive person but do not have an autism spectrum disorder.

My diagnoses - social anxiety disorder and obsessive-compulsive disorder.

I’m no longer involved with the ASD world.


anneurysm
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02 Jan 2011, 2:15 pm

anbuend wrote:
wavefreak58 wrote:
I would be interested to know how you behave in totally new environments. It seems to me you have found a positive comfort zone in which to operate. This is not a bad thing at all, but it could mean that you have put together a package of specific skills that work very well only for the activities that are prominent in your life. What happens if these skills don't generalize to all situations? Will you again more overtly display autistic traits?


Is it really important to get the diagnosis officially removed? What good would that do that you couldn't accomplish by ignoring it and not giving it out to people who didn't need to know? You can always form an identity without it but keep it in your back pocket in case your life changes. I'm just worried because I run a mailing list for autistic adults with daily living issues which means I see what happens to lots of people after the "front" doesn't make their issues go away in the long run. It can get really bad 10, 20, 30 years or more down the line when people find out that an autistic person who learns to pass is usually still an autistic person underneath. (I mostly avoided this issues as my autistic traits get more intense not less. But I have seen too many others..)


I've heard of this phenomenon as well, and a part of me worries about regressing later on. It's a legitimate worry, but for now I've conciously decided to put it on the back burner until I get my other issues sorted out. As for disclosure, I don't tell anyone about my AS unless they are associated with the autism field or are one of my closest friends.


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Given a “tentative” diagnosis as a child as I needed services at school for what was later correctly discovered to be a major anxiety disorder.

This misdiagnosis caused me significant stress, which lessened upon finding out the truth about myself from my current and past long-term therapists - that I am an anxious and highly sensitive person but do not have an autism spectrum disorder.

My diagnoses - social anxiety disorder and obsessive-compulsive disorder.

I’m no longer involved with the ASD world.


anneurysm
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02 Jan 2011, 2:27 pm

Mumofsweetautiegirl wrote:
I've heard that some girls and women with ASD are able to teach themselves social skills so well that others don't realise they're autistic. Females are especially good at mimicry and some women become so good at it that over time they no longer realise that they're doing it. It's for this reason that it's believed that up to 50% of women on the spectrum are NEVER diagnosed and simply fly under the radar. So it could be that you've become so socially adept that your AS is now barely detectable -- but it is probably still there. It sounds like you were lucky to get a diagnosis at all because you could have easily - like so many girls and women - flown under the radar and not had your AS picked up. Congratulations on overcoming all of your AS challenges by the way. :) I hope that my daughter with ASD ends up as lucky as you in that regard.


Thank you. :) As well, I totally agree with everything you said...in that my AS is likely still there but simply underlying everything else. The only difference is that my AS traits are no longer impairing me and that the difficulties I do have would be better explained by something else. When I initially started to suspect that I had surmounting difficulties with anxiety, this was simply dismissed as "part of AS". Thing is, not everyone on the spectrum experiences anxiety, and likely not in the ways I experience it, so I know that it cannot be explained by an AS diagnosis. Best of luck to your daughter, by the way, I am sure you are a very supportive mother...just coming on this site is indicative of that! :)


_________________
Given a “tentative” diagnosis as a child as I needed services at school for what was later correctly discovered to be a major anxiety disorder.

This misdiagnosis caused me significant stress, which lessened upon finding out the truth about myself from my current and past long-term therapists - that I am an anxious and highly sensitive person but do not have an autism spectrum disorder.

My diagnoses - social anxiety disorder and obsessive-compulsive disorder.

I’m no longer involved with the ASD world.


MathGirl
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02 Jan 2011, 2:33 pm

I strongly believe that you can't overcome AS... you probably had behaviours that appeared AS-like during your childhood, but they were not prominent enough to be pervasive. There are many, many people out there who exhibit AS-like behaviours and did so even more strongly when they were children, but they still have sufficient social awareness that they have learned instinctively, are able to hold a job, and are able to juggle social life with appropriate-age peers, school, and work. If the DSM criteria were to be blindly applied to them during their childhood by a non-professional, they would have probably been diagnosed with AS. However, everyone learns to be more flexible and more socially aware as they grow older. There are some people for whom it might take longer to learn everything, but eventually, they do. I don't think anyone on the spectrum is ever able to learn everything, but they are able to learn compensatory techniques that may mask their autistic behaviour for limited periods of time. You probably did not have AS in first place, but as you said, had many traits of it that made you "borderline" AS. So while it may have taken you longer to understand and apply the things that come naturally to most people, you were eventually able to do it.

As for your speaking endeavors, you can definitely still engage in them. You don't need to have the label in order to speak about it, IMO, because you have so much experience with the autistic community already. Although you may not understand completely what it's like to be autistic, you can at least draw on some of your childhood experiences as well as your mentoring experiences to help other people on the spectrum. Compared to the other non-autistics who speak on the subject, you have a very unique set of experiences and knowledge to draw upon. As for defining yourself in the context of your speaking endeavors, if you get reassessed and don't qualify for the diagnosis anymore, I think you should just honestly say that you were thought to have AS as a kid and don't have it anymore. You may end up being diagnosed as BAP or borderline autistic, so you can then refer to yourself that way.



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02 Jan 2011, 2:49 pm

I think saying someone can't overcome AS is too black and white. Some traits of AS can be overcome, some are a part of you that remains with you. In affirming that we are differentm, and that's not going to change, let's not forget that there are AS related things that we can over come, that some people truly have overcome. It doesn't make one magically normal. But getting better, improving, growing as a person, does happen for people with AS.


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02 Jan 2011, 2:59 pm

MathGirl wrote:
I strongly believe that you can't overcome AS... you probably had behaviours that appeared AS-like during your childhood, but they were not prominent enough to be pervasive. There are many, many people out there who exhibit AS-like behaviours and did so even more strongly when they were children, but they still have sufficient social awareness that they have learned instinctively, are able to hold a job, and are able to juggle social life with appropriate-age peers, school, and work. If the DSM criteria were to be blindly applied to them during their childhood by a non-professional, they would have probably been diagnosed with AS. However, everyone learns to be more flexible and more socially aware as they grow older. There are some people for whom it might take longer to learn everything, but eventually, they do. I don't think anyone on the spectrum is ever able to learn everything, but they are able to learn compensatory techniques that may mask their autistic behaviour for limited periods of time. You probably did not have AS in first place, but as you said, had many traits of it that made you "borderline" AS. So while it may have taken you longer to understand and apply the things that come naturally to most people, you were eventually able to do it.


To me, this sounds like circular logic. How do we know she didn't have AS? Because she overcame it. How do we know people can't overcome AS? Apparently, because we retroactively define those who overcame it as not having AS.

If someone fit the criteria as a child, then they had it. Maybe a different variation of it than those who truly can't overcome it. But, still, just as real. Their later experiences don't change the past.

There's a lot of variability on the autistic spectrum. That includes which traits we can overcome, and to what extent.


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02 Jan 2011, 2:59 pm

Mysty wrote:
I think saying someone can't overcome AS is too black and white. Some traits of AS can be overcome, some are a part of you that remains with you. In affirming that we are differentm, and that's not going to change, let's not forget that there are AS related things that we can over come, that some people truly have overcome. It doesn't make one magically normal. But getting better, improving, growing as a person, does happen for people with AS.
Yes, but that would have to occur through other compensatory mechanisms as well as experience. I don't think it's possible to change the fundamental way of thinking of someone with AS, i.e. specific to general thinking, higher awareness of patterns, a certain degree of monotrack perception, etc. I think that while it's possible to adapt certain aspects of the autistic mind to the outer environment, the general mode of perception of someone on the spectrum is preserved throughout their whole lifetime.

Mysty wrote:
If someone fit the criteria as a child, then they had it. Maybe a different variation of it than those who truly can't overcome it. But, still, just as real. Their later experiences don't change the past.
Yeah, that's what I was aiming toward. I don't think it's pure AS, but something like BAP or borderline autism.



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02 Jan 2011, 3:05 pm

Cash__ wrote:
Why don't you define yourself by who you are? Anything else would be a lie anyways.

According to Tony Attwoods book, 20% of people who are diagnosed as children, would not meet the criteria for a diagnosis as an adult. Its a developement disorder, either they developed out of it or they came up with good coping mechanisms along the way. So what your saying isn't that odd. Your part of the 20%.

So if you we're to give a talk. You can talk about this is what I was like as a child. This is what i am like today. And this is the road how I got there (whatever that is). I think people would find a talk about your journey from A to Z to be very informative.


I'm thinking about just shifting my focus to something like that. My fear is that people just won't be as receptive to my point of view...my two main contacts who assist me with my speaking have cautioned against saying that I don't have it anymore because the general consensus in the autism professional community is that there is no cure and once someone has AS then they have it forever. However, I can't lie to msyelf, and I can't lie to the people who listen to me if I no longer have it.


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Given a “tentative” diagnosis as a child as I needed services at school for what was later correctly discovered to be a major anxiety disorder.

This misdiagnosis caused me significant stress, which lessened upon finding out the truth about myself from my current and past long-term therapists - that I am an anxious and highly sensitive person but do not have an autism spectrum disorder.

My diagnoses - social anxiety disorder and obsessive-compulsive disorder.

I’m no longer involved with the ASD world.


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02 Jan 2011, 3:05 pm

MathGirl wrote:
Mysty wrote:
I think saying someone can't overcome AS is too black and white. Some traits of AS can be overcome, some are a part of you that remains with you. In affirming that we are differentm, and that's not going to change, let's not forget that there are AS related things that we can over come, that some people truly have overcome. It doesn't make one magically normal. But getting better, improving, growing as a person, does happen for people with AS.
Yes, but that would have to occur through other compensatory mechanisms as well as experience. I don't think it's possible to change the fundamental way of thinking of someone with AS, i.e. specific to general thinking, higher awareness of patterns, a certain degree of monotrack perception, etc. I think that while it's possible to adapt certain aspects of the autistic mind to the outer environment, the general mode of perception of someone on the spectrum is preserved throughout their whole lifetime.


And I think that what you say here it too black and white. People can change how they thing. It happens. People on the autistic spectrum aren't exempt from the possibility of mental change. We are capable of deep down change, not just superficial change.


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02 Jan 2011, 3:13 pm

blacksheep wrote:
Some people "just get it" and some people have to learn a way to adjust and fit in, thus I think would explain the hypervigilance. Having to scan your environment and mentally have to figure out what you should do next would be exhausting and make anyone anxious. You pointed out that you analyze others for their social mistakes, I am sure you do this to yourself also. Thus the anxiety and depression in the forever changing world. It would seem you would never get a break. Plus, I would think acquiring more knowledge and experiences would make it where you have a whole lot more information to go through and decide what is what and how to respond. So I would contribute the stress, depression and anxiety to the AS, even if you have been managing the typical traits. I would also ask myself, why am I angry at these "people"? Is it because you feel you have to question yourself? Does this contribute to your anxiety? And substance abuse I would call "self medicating". Impulsive can mean a lot of different things to other people, but I would ask if you are being "impulsive" because you are really overwhelmed and this is the way you dealing with it? Mind you, I could be WAY off base.


You have just described my issues better than I ever could. It has been hard adapting to the world, and throughout my life I have felt like I have to work ten times harder than everyone else. I have described this phenomenon...the anxiety, mistrust and frustration I feel at the world as an 'AS aftermath syndrome" where I attribute the unpredicatable nature of people and of the world at large as threatening because it has rejected me for most of my life.

These are all great questions and thoughts I should mull over...as such, I will deeply consider them.


_________________
Given a “tentative” diagnosis as a child as I needed services at school for what was later correctly discovered to be a major anxiety disorder.

This misdiagnosis caused me significant stress, which lessened upon finding out the truth about myself from my current and past long-term therapists - that I am an anxious and highly sensitive person but do not have an autism spectrum disorder.

My diagnoses - social anxiety disorder and obsessive-compulsive disorder.

I’m no longer involved with the ASD world.


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02 Jan 2011, 3:14 pm

MathGirl wrote:
Mysty wrote:
If someone fit the criteria as a child, then they had it. Maybe a different variation of it than those who truly can't overcome it. But, still, just as real. Their later experiences don't change the past.
Yeah, that's what I was aiming toward. I don't think it's pure AS, but something like BAP or borderline autism.


No, that's not what I meant.


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02 Jan 2011, 3:20 pm

autism is a developmental disorder so anyone with diagnosis with always be improving.aspergers and autism are a diferance in development,but we still develop and grow old old and mature.for instance someone diagnosed as a hfa in school might seem asperger like in there thirties.someone who was severly autistic in early childhood could be fairly high functioning by there forties.and likewise someone with asperger could fade slowly into shy withdrawn but fairly normal personality by middle ages.everyone with autism is continualy developing.if your born with as then you will always have it



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02 Jan 2011, 3:30 pm

MathGirl wrote:
I strongly believe that you can't overcome AS... you probably had behaviours that appeared AS-like during your childhood, but they were not prominent enough to be pervasive. There are many, many people out there who exhibit AS-like behaviours and did so even more strongly when they were children, but they still have sufficient social awareness that they have learned instinctively, are able to hold a job, and are able to juggle social life with appropriate-age peers, school, and work. If the DSM criteria were to be blindly applied to them during their childhood by a non-professional, they would have probably been diagnosed with AS. However, everyone learns to be more flexible and more socially aware as they grow older. There are some people for whom it might take longer to learn everything, but eventually, they do. I don't think anyone on the spectrum is ever able to learn everything, but they are able to learn compensatory techniques that may mask their autistic behaviour for limited periods of time. You probably did not have AS in first place, but as you said, had many traits of it that made you "borderline" AS. So while it may have taken you longer to understand and apply the things that come naturally to most people, you were eventually able to do it.

As for your speaking endeavors, you can definitely still engage in them. You don't need to have the label in order to speak about it, IMO, because you have so much experience with the autistic community already. Although you may not understand completely what it's like to be autistic, you can at least draw on some of your childhood experiences as well as your mentoring experiences to help other people on the spectrum. Compared to the other non-autistics who speak on the subject, you have a very unique set of experiences and knowledge to draw upon. As for defining yourself in the context of your speaking endeavors, if you get reassessed and don't qualify for the diagnosis anymore, I think you should just honestly say that you were thought to have AS as a kid and don't have it anymore. You may end up being diagnosed as BAP or borderline autistic, so you can then refer to yourself that way.


I think this is one of the reasons I am very much against getting a diagnosis unless the condition is absolutely affects functioning for the person. My difficulties never became apparent until I started going to school and teachers noticed I could hardly function in a classroom setting...other than that my parents just thought of me as a bright and quirky kid. The only reason I was diagnosed was to recieve accomodations in school...but this could have been avoided had I simply been transferred to an alternative setting that embraced my strengths instead of focusing on what I could NOT do. If that happened, I likely would have not been diagnosed at all. I feel that I really did not have the full picture of AS all along (I was also given another diagnosis of PDD-NOS) although I definitely had things that suggested it. I feel the public educational system just exacerbated my difficulties by trying to limit my creativity and unconventional methods of learning, making me more resistant and anxious.

As well, I've been going with the suggestion to just simply refer to my childhood and mentoring experiences when speaking and only elaborate if anyone asks. When I discuss my job with people I've just met, I explain that I speak about my mentoring experiences, but not that I have it. People always ask if I have it though, as if they are in disbelief that i do, or simply wnat to know why I'm so interested in autism. It is then that I am unsure of how to define myself.


_________________
Given a “tentative” diagnosis as a child as I needed services at school for what was later correctly discovered to be a major anxiety disorder.

This misdiagnosis caused me significant stress, which lessened upon finding out the truth about myself from my current and past long-term therapists - that I am an anxious and highly sensitive person but do not have an autism spectrum disorder.

My diagnoses - social anxiety disorder and obsessive-compulsive disorder.

I’m no longer involved with the ASD world.


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02 Jan 2011, 3:31 pm

Mysty wrote:
And I think that what you say here it too black and white. People can change how they thing. It happens. People on the autistic spectrum aren't exempt from the possibility of mental change. We are capable of deep down change, not just superficial change.
In The Way I See It, the first book by Temple Grandin I've read, she explained the autistic brain as being uniformly wired in a way that is completely different from the non-autistic brain. I don't remember the exact words she said, because I've read it almost 2 years ago, but the way I visualized it seemed to me like it was just an inherent way of being wired. I've been sitting here and thinking for a long time, because at this point, my brain is just overflowing with information I have learned in the past, and I can't properly compartmentalize it into words. But one thing I can say is that promoting the idea that the autistic brain can be completely changed is dangerous, because parents will start believing that their kids' autism can be cured, and will start pressuring their children to behave in neurotypical ways without appreciating their unique self. It's a sensitive issue to me because I have pressured myself to be normal for several years, trying to practice and learn ways to be socially capable, while neglecting my development in other areas I used to be considered gifted in. Now that I've reverted back to my natural state, some of the symptoms I have struggled with in the past have even worsened, and I believe that has happened as a result of the anxiety that was caused by trying to fit in.

anneurysm wrote:
When I discuss my job with people I've just met, I explain that I speak about my mentoring experiences, but not that I have it. People always ask if I have it though, as if they are in disbelief that i do, or simply wnat to know why I'm so interested in autism. It is then that I am unsure of how to define myself.
Have you ever asked them why they ask you? It would be interesting to find out the reason.



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02 Jan 2011, 4:28 pm

Mysty wrote:
I think you are still qualified to speak about AS. You remember what it was like, and you still have some traits. As far as how to describe yourself, in advertising these talks, I think it depends on who you are talking to, and what you are talking about.


In terms of a webpage or a facebook fan page advertising my services (I currently have both), I mention that I have Asperger's although I am very uncomfortable portraying myself in that fashion. Perhaps I should simply change it to "...was diagnosed at 7". What do you think?


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Given a “tentative” diagnosis as a child as I needed services at school for what was later correctly discovered to be a major anxiety disorder.

This misdiagnosis caused me significant stress, which lessened upon finding out the truth about myself from my current and past long-term therapists - that I am an anxious and highly sensitive person but do not have an autism spectrum disorder.

My diagnoses - social anxiety disorder and obsessive-compulsive disorder.

I’m no longer involved with the ASD world.


anneurysm
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02 Jan 2011, 4:36 pm

Mysty wrote:
I think saying someone can't overcome AS is too black and white. Some traits of AS can be overcome, some are a part of you that remains with you. In affirming that we are differentm, and that's not going to change, let's not forget that there are AS related things that we can over come, that some people truly have overcome. It doesn't make one magically normal. But getting better, improving, growing as a person, does happen for people with AS.


I wholeheartedly agree. That's the danger of assigning something as subjective as AS, which can take on vastly different appearances and forms, a definition. It simply trangresses beyond definition because there are so many people I know who do not fit the image of textbook AS but have been given this label for some reason. For a person who narrowly fits or is on the borderline of fitting AS criteria, they may see themselves as "cursed" or "stuck" (as was the case with me), and abandoning all hope of overcoming behaviours. It is not the most satisfying situation, which is why, again, I feel diagnosis should not be made unless it actually debilitates the individual involved and would not be better explained by something else.


_________________
Given a “tentative” diagnosis as a child as I needed services at school for what was later correctly discovered to be a major anxiety disorder.

This misdiagnosis caused me significant stress, which lessened upon finding out the truth about myself from my current and past long-term therapists - that I am an anxious and highly sensitive person but do not have an autism spectrum disorder.

My diagnoses - social anxiety disorder and obsessive-compulsive disorder.

I’m no longer involved with the ASD world.