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

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I have been avoiding this board for a while for the reasons below...I know I have some messages to respond to but more than anything I have to get the following off my chest first.

I need your honest opinions on this very tough subject.

I am going for a psychological re-evaluation soon. The reason is, simply put, that I need an updated diagnosis that refers to my current situation rather than a past one. Family, friends, and even myself no longer feel that a diagnosis of AS applies to me, and that the behaviours I display are more indicative of an anxiety disorder.

I am strongly against compartmenalizing myself by a narrowly defined label or using it to gauge my identity, and will use an updated diagnosis to do neither of those things. I am simply concerned as I am becoming well known for my speaking endeavours. Since 16, I have spoken at countless schools, sessions and conferences across the province about my supposed AS, and have even recently presented with Temple Grandin...so I have already established some pretty good ground for myself on the condition that I have AS. If I am no longer considered to have AS, how will this affect my future prospects with these presentations? My mom keeps telling me to emphasise the areas where I was a kid...even suggesting I show clips from old videos where I acted totally AS, which is a good idea. Still, I am concerned about how I should portray myself if people choose to delve further.

The things that now debilitate me are the bits and pieces left behind once I conquered AS. Due to bullying, rejection and misunderstandings of me over my childhood and teen years by nearly everyone who came into contact with me, I have serious issues with trusting people and the "real world". I feel angry at everyone and long for escape, suffering from anxiety, depression,, implusivity and even substance abuse. I'm a great role model, eh? I can't teach people to move forward and like themselves for who they are if I don't even like or take care of myself. The image of me as a successful speaker, although it exists, is a huge and horrible irony.

A part of me, however, wonders if I was even borderline AS from the start. My diagnosis letter, given at 7 when I demonstrated prominent AS characteristics, is interestingly worded. I was diagnosed by one of the leading specialists in my area at the time, and apparently he found it difficult to come to a consensus over what I had.

The letter reads:

"...I found it difficult to make a firm diagnosis on A. The best I could do was very tentatively diagnose her with Asperger Syndrome. The reason for this is that she has already made appreciable progress and I figure that in a years time she may not fit the criteria of AS. In my opinion, A. would do best with highly individualized programming in a small class setting. There should be an emphasis on developing her socializing skills, although I realize that this could be a slow and challenging process..."

Interestingly though, it took me until my last year of high school to gain the skills and confidence to overcome my AS-like behaviours...but I did it. My social skills are now fine...people have described me as outgoing, cheerful and friendly as I have been able to put on a "front" for people to make me likeable. Although I am by no means the life of the party, I can fit in...I am very socially savy, understand jokes and sarcasm and am able to talk about a wide variety of topics. I also am a very "feeling based" person. I am driven by my emotions and experience immense empathy.

As well, I no longer have any of the hallmarks of AS, such as preferences for sameness and routine and sensory issues...however, thinking back to when I was a kid and even a preteen, these things were definite issues with me. The only things I have that would suggest AS are my people obsessions and interests that are unusual in topic but not in scope or focus. (I keep these private rather than go on about them, and only my closest family and my best friend know of them).

As well, when I hear people on the spectrum talk about how they experience the world, I don`t relate to them AT ALL as the person I am today, but can DEFINITELY relate to them as I think back to myself as a six, eleven or even sixteen year old. This makes it hard for me to fit in to the autism community at large. I feel like I'm too socially skilled to fall into this category because when I do meet people on the spectrum I unfortunately pick them apart and analyse them for social mistakes...and I am not saying that these things make the person flawed in any way, but it is because I have been trained with a hypervigilance to see such things in myself. This is something I try to stop myself from doing but unconciously do anyway. It's unfair to me because I am a huge supporter of neurodiversity and when I do this I feel like I am lying to people in a way.

In short, I feel like AS was something that defined me when I was much younger. I read over experiences on the boards here and think...that was definitely me at 6 or 12. I'm a completely different person now, and the issues I have are with other things entirely.

I still speak in order to help people who have AS, as well as their families and support systems, but I don't do it because it applies to me. I want to keep helping people because I care for them, but I don't want to keep lying about who I am. Can anyone help me negotiate this? Any input is valued and truly appreciated.

You don't need labels to define yourself. But I think you know that.

You're talking about gaining skills, gaining confidence, learning things. You're talking about how you support neurodiversity, becoming a different person... etc. You've done a lot of interesting things, and you are most likely an interesting person. THAT, not some label, is who you are.

Regarding Asperger's and "growing out" of a diagnosis: It's a well-known phenomenon. What happened to you is something that happens to many people. You're on the border of diagnosis as a child. You get a good environment; you learn things; you work hard. Sooner or later, you don't qualify for diagnosis anymore because you don't fit that little criterion that says there has to be a significant impairment. You're no longer impaired; so you're no longer diagnosable. You've "grown out" of Asperger's. A diagnosis is a tool--and it's only needed when there's a problem. If there's not a problem, then there's no diagnosis.

What's still the same? Well, your personality's still the same. Your brain's still the same. You're still neurologically autistic--your brain uses those same autistic patterns it always has; only now you've learned enough that you're pretty efficient at it and don't need outside help anymore. And you're still culturally autistic, too; you support the neurodiversity movement and you hang out with autistics. You can explain that you aged out of the diagnosis, you can label yourself "broader autistic phenotype" or "Spectrum cousin". But autistic culture is not some kind of exclusive club where you have to show your neuropsychological evaluation report at the door. Diagnosable or not, you have a lot in common with autistics. And autistics are so diverse anyway that the variation required to make you non-diagnosable has less to do with your being different and more to do with the fact that you lucked out and got the skills and the friendly environment you needed to fully compensate for the gap between your skills and what's expected of the average neurotypical.

Well, don't let AS define you. I'm actually a lot different than most of the members here and I've never had a problem with that. Don't put other people on a pedestal and don't be overly dependent on others. You gotta stand on your own two feet and be comfortable in your own skin.

I'm currently in the same predicament as the OP. Ultimately I would like to spend time helping people with social problems because I used to be there myself.
However..
I try to be mindful of the fact that a single unfortunate event could send me crashing back down to earth at any point. I'm still fairly young and if the s*** hits the fan in the future I would like to still have a diagnosis of AS

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.

Is Templin Grandin not autistic because she happens to be an excellent public speaker?

I think AS is a way of processing and thinking, and I think those underlying processing will always be present. I can present as quite socially adept on occasions when I know what is expected of me but it's always a bit of a chore and my thought process is still much the same as it always was. I've learned to "do as the Romans" so to speak, but I'm still not a Roman.

The fact that you may have adapted or may have been misdiagnosed doesn't have any effect on who you are. A professional diagnosis may affect the ways you attempt to understand your own thoughts and behavior but they don't change your inherent behavioral tendencies. Removing a diagnosis would also not change said inherent behavioral tendencies. Regardless of how you may be classified, you are still the same person you were yesterday, and still the same person you were when you were six years old.

If you believed yourself to be autistic and were diagnosed as such and gave speeches based on that belief and were later found to not be, then you were acting under the most reasonable assumption at the time and you didn't do anything wrong.

Also if you actually are autistic but have adapted to the point where you can no longer be identified as such then you didn't do anything wrong.

When determining your future actions in regard to speaking on the subject, I would make sure that whoever you go to to reevaluate you is a highly qualified specialist in autism spectrum disorders, because it may be very difficult for a psychologist to differentiate a highly adapted autistic person from a neurotypical person, and if you go to a psychologist claiming that you were misidentified as autistic the psychologist may be biased in favor of agreeing with you, especially if they are not highly familiar with autism spectrum disorders. Any biases or desires of your own, or of any people who go with you to be interviewed may also influence the person doing your assessment, so it would probably be useful to bring as many people as possible who were familiar with your behavior when you were younger, from the time you were born through the time you were in school.

I would also make sure that regardless of the outcome you identify your own beliefs about your diagnosis to anyone who asks you to give a public speech. It is important to not misrepresent your own beliefs, and if you never have misrepresented your beliefs no one has good reason to fault you as if you had.

If you find out that you are autistic and are just highly adapted, you can continue to speak as you have been about the subject.

If you find out that you were misdiagnosed, then at least you have the training to speak, and you may give speeches about your new position in regard to autism spectrum disorders and possible advocacy or you may be able to expand and give speeches about some other interests.

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 think that by the time I was about 16 until recently (I will come back to this) I would not have met the criteria for AS( I just turned 26 years old). This is despite the fact that I was diagnosed at age 13 and there was no doubt in the diagnostician’s mind when at the time that I did in fact have AS. From the time I was 16 until now, anyone who I mention that I have AS to (with the exception of a friend from an ASD support group and a counsellor who I have told numerous stories about my childhood) fervently insist that I was misdiagnosed. I don't have many discernable odd mannerisms, I make eye contact and use gestures, and can have a reciprocal conversation. I can converse about several different topics as well, and although I have always had very intense interests I was able to hide them quite well (even from my mother who I was quite close to. I understand sarcasm (almost always) and have strong empathy (although I have been told that I have a "selfish empathy" i.e. imagining how I with my particular characteristics would respond to as a situation and assuming others will respond the same way). I can even give advice to friends regarding emotional/relationship problems.

As embarrassing as this is for me to admit now, I was very ashamed of this diagnosis when I got it and especially a few years later. Around the time I was 16 I was very interested in primatelogy and in Jane Goodale in particular. Anyways I read a lot about animal behaviour and I remember reading a lot of material that would claim something to the effect of "what makes us as human beings distinct from other animals is our capacity for language and our ability to empathize with other people". Since autism supposedly meant an impairment in these very things, I decided that I was an inhuman monster! I became very obsessed with not having AS and set about to systematically eliminate my symptoms I might have (any semblance of the disorder). I made myself eat a different food every single day.....I became rigid about not being rigid!! I went to noisy crowded malls and tried to desensitize myself to sensory stimuli. This did work to some extent! Soon afterwards I had a particularly severe bout of depression and subsequently was reassessed. The psychologist who reassessed me understood that I very much did not want the AS diagnosis to be reaffirmed. He wrote up a very long convoluted report that said I was diagnosed with AS at one point, and met the criteria for the disorder at that time. He said that” at this time (the time of re-assessment) I displayed very few symptoms of AS but after working with me for x length of time he could "not rule out the diagnosis of AS ".

Anyways I have struggled with anxiety and depression over the years. My skewed perception of what it meant to be autistic did not help!!
A couple years ago, after being married (very briefly) and divorced I returned to university (after having dropped out after 2 years when I was 20 due to another episode of anxiety/depression. This time I decided to major in Psychology, which I became intensely interested in. I FINALLY begun to accept and even embrace my AS as I read about it. Over the years I had become quite paranoid about things like my eye contact and gestures, and although I fit in social interaction was quite exhausting. Accepting that I had AS was such a relief. During periods of time when I experience depression or increased anxiety my repetitive behaviours temporarily return. Recently I had one of these periods in my life (of increased anxiety) and I reverted back to some off my rituals, sameness and stimming (the same stims I had as a child/pre-teen). However this time the behaviours have persisted for over a year. I now want to be assessed for the third time to see if I meet the criteria at this point. I am similarly worried about what the assessment might say. I now identify strongly with AS and have become VERY interested in it. I am doing an undergraduate thesis related to AS, and other papers on the topic. After all this time I would be very upset if I was told I did not have AS!

Sorry for my previous post rant, I have wanted to rant about this for some time!!

Anyways, anneurysm, I agree with the following and all the other posts that expressed similar sentiments as they apply to both of us:

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?

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.