No longer having AS = Identity and social issues.

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(apologies if this is long)

Sixteen years ago, when I was 7, I was given a diagnosis of AS because it was the closest thing the psychiatrist thought I had, even though I clearly displayed the whole picture of traits, and this was later changed to PDD when I was 9. However, over the past few years, professionals I have met with have said that I don't have it...but these people had only known me from a range of a day to two weeks, and they can't possibly make a judgement call on me without knowing me for long.

Now, my current psychiatrist who has been seeing me for half a year insists that I no longer have it, though I do have some traits. I came to her for a reassessment, and she keeps saying that it would not benefit me because I obviously don't have it. This is proving very difficult for me to deal with, even though I know myself that I don't fit the AS profile. People have been saying to me, screw functioning labels, be yourself, etc, but it really isn't that simple, and here's why:

I can't relate to almost everyone on the spectrum I meet, and it gets tough because I present sessions about AS and meet a ton of people on the spectrum, and these people assume that I am just like them. But because of my high level of anxiety and self-conciousness, I have been mercilessly correcting myself since the age of 9-10. I am so focused on the 'right' body language, eye contact, things to say, etc. that I have no idea what the 'wrong' ways are anymore. People told me to look them in the eyes so much in the primary years that i began to force myself to look in peoples eyes by the age of 10.

When I hang out with people on the spectrum...as much as I enjoy learning about them, I feel embarrassed for them because they are socially awkward and can clearly see what their 'mistakes' are. This is not something I can easliy change though. It stems from seeing my former self in them...and feeling an urge to 'correct' everything, just like I did with myself. I also can't make the emotional connections with them that I make with my NT friends, so I don't have as much fun with them.

I love hanging out with them from an intellectual standpoint where we discuss issues related to AS itself, as I enjoy learning about it and exploring issues related to it. The problems occur when they don't want to talk about it...and when some of them think that I am their best friend and want to spend all this social time with me, but I find it draining because when we do, they are clearly having fun and see it as a genuine emotional connection, but I don't.

I feel downright horrible even thinking this way, though, since I am all about tolerance and acceptance. My psychiatrist says that I shouldn't beat myself up over it and that is a logical normal response to this situation, but I can't help it.

However, when I am with my NT friends, I am more likely to be scrutinized and picked on. I am extremely upset and obsessing over this one situation where this one friend...one of my closest and one who I thought I trusted, said some nasty things about me. I have also been ditched as a friend and even bullied by tons of other NTs as recently as around this time last year.

I have been looking everywhere for people in my same situation, and I haven't found anyone. There are a few NTs who I hold close to my heart as they have had problems with anxiety, and they get me completely. I can't see them all of the time though.

I feel so alone. I wish I was very clearly aspie or very clearly NT for me to fit into one of these groups comfortably. But I am neither, and I don't.

Just looking for someone who understands this.

I understand it. I'm the same way. I was diagnosed at age 10, but by the time I was 16 I had grown out of it, or at least shedded the diagnosis. I'm not quite accepted by NTs or by people on the spectrum. I've come to terms with being different than most people. In fact, I see myself as more normal than the majority of people. I went through the phase you are describing, but that was about 3-4 years ago, and I never fully accepted AS as an identity. This doesn't mean you can't help the kids, in fact, you can help them even more now. I realized that the last time I helped out with an AS community. I can bridge the gap better than anyone else there, so they see me as a valuable asset. They don't see me as a fraud.

The reality is that you still have AS, which is why you have trouble making friends with NTs. True, you have made adaptations that make it difficult for doctors to diagnose AS, but the reality is that your brain functions just like those of us with AS--it is just that you now have a decent ability to translate between the AS and NT worlds. But, an acceptable translation doesn't give one the same confidence level as understanding something in the language in which it was spoken or written.

One concept that helped me a lot is that Aspies are quite literal and exacting, while NTs have a much more flexible interpretations. Often, when an NT asks a question, he either wants to be reassured or not be answered at all. Telling him he is wrong is not a valid option!

It is a good thing that you learned these skills. You are very valuable. To have someone that understands the spectrum and problems with NT's first hand.

So glad to see that you can relate to this and really seem to know what I'm describing here...the fact that you have described this as a phase gives me hope as I would do anything to get away from all this questioning. And I am so glad you are seen as an asset...my only concern is that people are obsessed with there not being any end to having AS, and think that once I have it, I will always have it. I have tried to explain this point of view at my past sessions, and the people in charge prevented me from doing it. What are your experiences with this?

I don't have trouble making friendships with NTs...in fact, I have a few very good NT friends as I described above. I can make emotional connections with people, and read social situations very well. All of the recent falling outs with my friends were due to their inability to cope with my anxiety disorder rather than having poor social skills, and people judge me based on my emotional instability and low self-esteem...issues that are not exclusive to AS.

And yes, my brain may still be wired for AS, but how can I have it if my social skills are fine? It's all about if the behaviours are there or not...and to get a diagnosis you have to be impaired The only part of AS I still relate to is having obsessions and a one track mind, but my psychiatrist says the way this presents in me is more OCD-like than ASD-like.

Then there is the point of my behaviour around other aspies. I can logically understand their behaviour by seeing it as similar to the way I acted as a kid, but I can't really relate to them today.

Last edited by anneurysm on 31 Jul 2011, 11:08 am, edited 1 time in total.

I doubt that any of us really fit. I enjoy talking to people on forums like this and in local support groups, but I know what you mean. We're all individuals, and having Asperger's in common isn't everything.

As for your diagnosis, it only matters if you are applying for funding for services or disability. The label of no use beyond that and gives people no practical, useful information. You'll still need to spell out what it means in your case. Socially and in most situations, it works against you because it lets people think they know something when they don't.

Unless you need funding, your self-diagnosis is all you need. The shrinks I've met are useless and clueless. You are the only one in there, and the only one who can possibly know what's happening.

It is unfortunate, but sometimes ASDs are misdiagnosed. I do not know what happened in your case: either you had it and still have it but with fewer noticeable symptoms due to learning coping strategies. Or you did not have it and was misdiagnosed from the beginning. Anxiety can produce asperger-like symptoms in some people. Coupled with OCD, I can see how that could look like Aspergers. You said the psychiatrist originally gave you this diagnosis because that was the only thing he could think of that matched your symptoms. Perhaps it was anxiety to begin with. It is a matter of "which came first...." Have you spoken to your parents about this, asking them what you were like when you were really small, likely a time you cannot remember. If the symptoms existed prior to the anxiety, then your first psychiatrist was likely on to something. If the anxiety existed and the symptoms soon followed, then your current psychiatrist is the one who is probably correct.

If you train a monkey to walk, talk, and use a toilet, does he suddenly become a human?

The way I see it, you've trained yourself to be able to handle social situations. That does not mean you necessarily see these social situations the same way your NT friends do. So you could very well simply have Asperger's but trained yourself to cope with it. That's what you get when you have a diagnostic criterium which is dependent on the subject "suffering". I have never seen a doctor say that a friendly tumor isn't cancer, but psychologists do not keep to that kind of standard.

If you feel that you do not qualify as Asperger's, does it matter? You seem to understand people with Asperger's, and if you have overcome the social issues with Asperger's, maybe you can help others do the same. I would not worry if I were you.

I agree it could be that you are still on the spectrum, but have gained sufficient coping skills that currently, you can't be diagnosed under the formal criteria. I think this can happen, especially if you started off on the milder end of the spectrum. You don't "grow out" of ASD. It is something that remains with you for life.

I have learnt a lot of coping strategies regarding social skills over the years, to the point where it was a battle to get health professionals to take the concept of me having Asperger's difficult. I remember raising this topic to my former psychiatrist and he basically laughed in my face and said no, because my social skills were "too good".

Yet, there are issues with my social skills. It's just that they aren't immediately apparent. I don't read people well [which becomes obvious the more you observe me], I don't really know how to carry on conversations with people and I have problems with empathy.

I think your position can do some good because you can show other people on the spectrum that their social skills can improve in time, as well as their relations with their peers. I think a lot of people would benefit from that sort of advice.

I feel like a water-bird that to survive had to Learn to be a land-bird......v lonely living such an in-between existance. Thank god i am a writer

Or it could be that you are simply not on the spectrum and never were.
Some would call you a "cousin." An undefined category that's kinda like but not exactly.
What do YOU believe? What constructs are most helpful to YOU?

No Autism is in my genes, my biological father has AS as does my son who has less but clearly AS traits. Being a quaker connects me to many outsiders and excentrics, here is where i feel most at home.

What i found of great value, which was so much more useful than my formal dx with AS was my CBT at the maudsley hospital ASD clinc, for it was here I could clearly see how impared i have always been by my executive function and emotional regulation.

The doctor i saw over a period of 3 months helped me to use Mindfulness stratigies to manage my difficulties which has been v useful

Yeah, I am in this situation too. I am really, really sure that I could have been diagnosed with autistic disorder up to age 7 or so. Now I seem more like I have Asperger's except that I had early language delays, so my counselor semi-formally diagnosed me with PDD-NOS. But I have been getting the impression that she doubts that I am on the spectrum at all, because I have learned so much and compensated so well by this point in my life. I'm 29.

I just hate it when people don't take me seriously or think they know better than me who I am. And this puts me in a very uncomfortable position. People who have known me for years already have me defined as shy and don't want to believe I'm autistic, because 'autistic' is some horrible, horrible thing. But it's killing me to live like I have a secret.

My counselor said you can't outgrow autism, but I DID! Not all of it, but if you would have seen me as a young child, you would have seen an autistic child. I don't think the professionals know everything.

My experiences are pretty bad. Most conference type things I've been to are presented by so called "experts" who actually don't know a damn thing about autism and say things like "We need to think about such and such" instead of offering anything worth of value. The last one I went to (I'm never going to these things again) had some douche giving a presentation where, among other things, he mentioned vaccines in his presentation, and one of the people in the audience kept bringing up mercury poisoning. After the big slideshow, there were 5 speakers there, including me, and only three of them were on the spectrum, and we got about 2 minutes each, and the other 2 people (one was a doctor/professor academic guy, and the other was some social worker woman) got about 10 minutes. I started off by saying "OK, first of all, I just want to point out to you that Asperger's isn't a disease. It's not a disease any more than being a narcissist is a disease. Just because you put some fancy name on a pattern of behavior and include medical jargon in the description doesn't make it a sickness. Diseases kill you. Autism does not. So enough with this mercury poisoning horses**t. I've about had it with this fear campaign nonsense. Don't you people realize that using fear to promote something is the ANTITHESIS of teaching and educating??" Of course, after that, I essentially lost my speaking privileges, and I was rightfully pissed. There was some good ol boy sitting next to me that was at a four year university, majoring in Average Joeness, some aw shucks loser that made me want to puke. I'm sure he was a nice guy, but it wasn't him I was mad at, it was the whole "Awwww, look, it's a token Aspie!" attitude from the audience there, thinking he's really cool because he does what he is told and nods his head at all the right times. You either want to solve the problem or you don't. I mentioned to them that putting the burden on educators is a horrible idea because they have enough crap to deal with in the modern school system. Naturally, I was the most popular guy in the room. I got the sense that the majority of people in the audience wouldn't know what AS was if it sucked them off.

You sound like a somewhat socially awkward NT, who needs to pick better NT friends. Since NTs are basically "everyone else", you're going to find a wide variety of behaviors and skills in the way they socialize. (Also, I'd say that most NTs feel a little socially awkward, even if they don't make it apparent).

Your statement about making better emotional connections with NTs suggests you "get" them...and not on some superficial level. That would make me think you're probably an NT.

Being weird, even as an NT, is okay. People who can relate to you on some level will tend to not focus on the things that make you different. Most of these mysterious "social rules" that all NTs are supposed to follow are nonsense, as long as you're not creeping someone out, most other NTs will overlook the quirky behaviors. The only NTs who nitpick about quirks are usually NTs who are incredibly insecure about themselves (because they too, are afraid someone might expose them as "different").



People tend to hate in others what they hate in themselves. Don't judge yourself too harshly about it, that's pretty much human nature.



NTs sometimes have trouble making friends with NTs. NT's social maturity differs with each individual. "Normal" development is the result of averaging, not an exact scale that is applicable to all NTs that are expected to happen like clockwork. And someone who's a little behind in one area of development may be compensating in an area of development where he's advanced for his age or peer group.