Should individuals with Aspergers be diagnosed at all?

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thank you poolplayer, your comment made me feel a bit warm and fuzzy inside

I think willard hit on something when he went OT, I certainly feel like I'm acting stranger post diagnosis. I can accept my weirdness better now and I don't try to force myself to be something I'm not. I still want to be a better person, as part of my general path to enlightenment, but I try to go about it in a way that doesn't deny the fact that I am a bit different.

Funny enough, getting the Tourette's dx has made me tic more in public, because now I just think to myself: so what, I have Tourette's. And as anyone with Tourette's will tell you, relaxing about your tics will make them less severe, as there's nothing more stressing than trying to suppress them, and stress is an aggravating factor in Tourette's. So superficially it's worse, but in reality I feel better. Same as with AS I guess, although I do have a tendency to see all of my behaviour through and AS persepctive now....

I don't understand how this relates to my post but I'm trying. Normal people don't have to work nearly as hard as you do, don't have nearly as much stress about having a typical lifestyle as you so you got the diagnosis which I think is right? It's the same with me today.

I still can't do lots of things but can appear very non-autistic too, especially with the many people who don't know me 24/7. I was even called very empathic by a half-professional when actually my social skills are so severely affected by autism that they're plainly lacking. I'm also stressing myself out all the time, normal people may have a stress level of 30 for coping with their life to appear normal, mine's 70-90 from coping and trying to appear normal so that every small thing will throw me into crisis.

I mean, if you only had to look out that others like you socially (which normal people do too) but wouldn't work as hard to cope and wouldn't stress yourself as much then you would be normal wouldn't you. So, the psychologist is right in not giving people who put the normal effort in appearing normal and who do appear normal with that normal effort a diagnosis of AS. Or did I misunderstand what you said about the psychologist?

Many people believe that AS just affects males and have very stereotyped expectations of what AS looks like. Perhaps her son is severely affected and she thought, by listening to you that you weren't. Perhaps she doesn't believe that AS can occur in females because she'd just been taught about the male version.

Perhaps, mistakenly, she thought that you were some kind of "trouble maker" because of her preconceived ideas or that she didn't know any better at the time.

She may not have believed you given the limited information/misinformation that she may have been given. This was unfortunate.

Who knows, she might even be mildly affected herself, but may not have realised this yet or even thought it possible.

I don't think that the misunderstandings are really anybody's fault, I think that they're just symptomatic of the lack of information and services out there.


If you're a female, I've find that no-one believes you if you mention the AS label.
This is why I usually keep quiet about it.
The AS label has led lots of people to behave in a very hostile and fearful way towards me. If they don't know, paradoxically, I've found them to be much more accommodating of my personality.




I can kind of appreciate where the woman you spoke to is coming from.

I was told to keep my label and past a secret from people by people that were close to me too. I now believe that they wanted me to do this for my protection. Openly admitting any weakness or social foible makes you an easy target. Once people have an excuse to exclude you from activities, they will exclude you.

I think that she is just trying to protect her son from discrimination in education/employment in the only way that she currently knows how. So in short, I believe that she's doing the best that she can with the limited resources that she currently has available at her disposal.

If people don't know about the AS label they tend to give individuals more opportunities (this has been my experience any way).

She probably wants her son to have opportunities without attracting too much attention to himself. I believe that she wants her son to be happy and get the help he needs without making a "big tadoo" about it.


I agree that this situation is not at all satisfactory though: there's probably a lot on miscommunication and misunderstanding on both sides.

I actually think that if the general public were better and more accurately informed about neurological differences, some of them might actually want to help.

I believe that there are some potentially very helpful and nice people out there, but because they're either afraid, not aware, or incredibly misinformed they can't offer help.
However, I wasn't permitted to tell them anything at the time.

I think that this is a great shame.
I think that there are actually some nice NTs who'd be prepared to understand and help, if they knew.

But if these differences have to be kept quiet because of stigma, they'll never know.
The whole cycle just goes round and round.

People just have stereotyped expectations and if you violate those expectations, people become suspicious.


I'm trying to understand why that woman reacted in the way she did.
I think that she was very afraid and concerned about her son's future.
So, she probably has a very narrow view of the situation: her son and the other little boys at the support group.
I can only imagine the confusion and fear that she must being going through right now.

Perhaps she feels ashamed because of the way that other people have negatively reacted to her son's label.

That's the impression that I got anyway.


Well done for trying to contact a support group.

I think it depends on hwo well you fucntion in daily life. If I functioned alright in general and wanted the diagnosis just for validation, I wouldn't seek it out...too time-consuming, too medicalized, the possibility of discrimination, etc., and I could b eon WP without a diagnosis anyway. However, I did seek a diagnosis (or rather, I sought help and was given a diagnosis in the process) when I was falling apart first in an independent living training hoem for the disabled (I'm also blind) and then in living on my own. If my parents hadn't objected, I would also have wanted to see a professional for what I thought was AS, when I was in high school...my parents use my apparently doing well then (which was only on the surface) as an argument why I don't need the diagnosis now and it's just an excuse etc.

There is no reason to say that adults shouldnt'be diagnosed jsut because they are adults. There is also no reason why you should always try to hide it...of course if you want a job and expect there to be little trouble related to AS, you'd better hide it than tell and end up being denied and possibly pursuing an ADA case. But there is no reason to hide it from support groups etc.

And getting back to the original purpose of this topic, I believe we as AS adults owe it to OURSELVES to get the proper diagnosis, even if that is not convenient to the NT world at large; whether we actually share might be another matter.

I have shared with just one friend and also with my band mates and they are all supportive. However, I have not told my family and there are one or two who I know will just say something like: "gotta pull yourself up by the bootstraps", or "we all have it tough, grow up, stop rationalizing", or other such nonsense; but along with that I know at least three who will say: "Aha! so that's why!!" and they will welcome me with open arms and most likely think about making amends/apologies (not necessarily acting on it).

I am determined to not have a victim mentality but to set the example.

I completely agree with this. I'm very glad they weren't diagnosing AS back when I was in grade school. Who knows how such a label would have altered my perception of life and confidence in myself? If I had to have found out when I was younger than I am, I would actually say that mid-twenties would have been better for me than late teens. There's just so much personality discovery going on at that age, things are still very volatile until a little bit later.

I'm not at a point where I need accommodations for anything in my life, so I see no point in seeking a diagnosis. I do, however, believe that I am wired differently than most, and it does appear that my wiring leads to quite a few autistic tendencies, some good and some bad.

Mdyar, I think there is some circularity in the assertion that is often made that most people with Aspergers are unemployed, (that is what you mean by self-sustain, yes?) It seems that anyone who can cope well enough to get a job, or in childhood who looks like they will be employable, is not given an assessment. I do think that probably causes all sorts of distortions in research into causes and treatments. I also think it's not fair on those of us who really struggle behind the scenes. If I had known twenty-five years ago what I just learnt these last few weeks about Aspergers, then my life would have been a lot easier.

Ambereyes, I'm really sad that you were made to feel that aspects of your personality, such as quietness, were symptoms. That's not how I read the DSM criteria or Tony Attwoods "complete guide".

Greentea, I didn't think the woman was deliberately trying to put me off. To be honest, she came across as very AS, I mean, very stream-of-consciousness, not able to see my point of view, totally focussed on her own point of view. I felt that her question about why did I think I was AS was gauchely rude rather than nastily rude. As Ambereyes says, she probably is just feeling terribly anxious about her son. She did cheer up a lot when I said that I could hardly speak when I was 15. I think that it's reasonable for parents to not want AS adults around their support group, however with the right setting they don't mind meeting us and we can give them a lot of hope. One way or another I did drag myself up by my bootstraps, so I'm living proof that it can be done. The thing is, she's a volunteer who has got off her behind and set up a support group - poor lady having to field off-topic phone calls, and she did as an afterthought say I could go along to their meeting as I am a parent myself.

Could you please cite the source for that statistic?

Those were the dark old days long before Attwood's guide and the DSM.

Where I live, informal assessments were being given.

How is it the "complete guide"?

I've seen the review of it, it seems to contradict all of the negativity that was forcibly drummed into me all those years ago.

In fact if you'd had a time machine and given some of the people back then Attwood's guide, they'd have thought that you were crazy.

But (like I said in another thread) you have to draw the line between "AS" and "regular social akwardness" somewhere, and the capacity to live an independent live is a possible criteria.

I am 52 and have been diagnosed for a little over a year. I have a son with high functing autism and a daughter with aspergers. The diagnosis helped my son because he was able to access early intervention and has made an enormous difference to his development.
My daughter was not diagnosed until teens and it has helped her mother and I understand some of the behavoural eccentricities that she displays.

I always felt like a square peg in a round hole and even though have achieved post grad qualifications it has been a difficult road at times. Having a diagnosis, for me, was to answer gnawing suspicions that I might have it but not trusting my own judgement of my own thoughts and behaviour as objective. The diagnosis meant that there was a reason I thought and acted as I do.

If someone has that nagging suspicion that they may have aspergers or something on the autism spectrum then seek out a reliable professional and take the tests to answer your questions.

Also I am happy to discuss my situation with any one who may want more information.

So here is a question. Suppose you have known you are different your entire life and you have had a nagging suspicion of AS, but when you seek out a professional diagnosis they tell you that you definitely do not have it. Then what?

Being employed and being independent are wayyy different things. I have a job, but i'm far from independent. Maybe in the future. Plus, you have to take into consideration that people have different situations.. In a situation where someone has family helping them out, especially if their family is financially well-off, they're going to have a greater chance of getting on their feet despite their issues. Being independent doesn't seem like a very good indicator of impairment to me. Someone can be completely independent, pay their bills, happen to be lucky enough to have a job working from home, and at the same time have impairments that are severely affecting their quality of life. On the other hand, you could have someone who isn't as severely affected who hasn't been lucky enough to find a suitable job and whose family wasn't functional enough to help him out getting started with such things. I mean, plenty of people diagnosed with Autistic Disorder have been successful... look at Temple Grandin. So it doesn't make sense that only those who can't make a living could be clinically significant enough to have AS.

Unless you need disability money, I think getting a diagnosis as an adult is something one does for themselves. Kind of finding an answer to an old riddle. Either you want someone to affirm that answer for you, or you don't. Its a very personal thing.

As the kids ... well ... We're pretty open about it because I don't want my son to feel there is any shame in it. It has gifts and it has burdens. Everyone has their own set, and they vary, and the kids he is growing up with all know that (we are also in a very ethnic and culturally diverse area). But I've also understood that there may come a time he wants to disown the label, and that is why we've never followed up with a medical diagnosis. He has a school use label that is getting him the services he needs (we are lucky in that way) and it can be discarded when he leaves school if he chooses.

But, honestly, I think by then things will have evolved further. Already, around here, so many people "get" it, when it comes to AS and the spectrum. We've got a cluster, so that is part of it. Other areas will probably follow. We can't be sure, but it seems to be the way its all going.

I kind of like knowing when a parent feels they are AS, because that allows me to understand more of their reactions; why they might attend certain functions, or not attend. We (the other parents) have a better sense, then, of how to include that parent and make them feel welcome. Too bad the mother the OP talked to didn't see it that way; well, its her problem, isn't it?

It's on Attwood's site. Go to research studies or some such and it's there (it's actually not there now, as it's been replaced by new studies to take part in--you can trust me when I say that it was 12% as I'm good with remembering things). I could probably find it, and I'll have a look later.

It's around 16% in the UK for AS. The highest number I've found in the US is in the thirties to low forties with the highest functioning of people (even then, the jobs are usually found by their parents); it's around 0 to 12% for LFA and HFA in the US depending on the study.

I'm about 95% sure of this, as I found some info about AS 10 years ago, but was in denial that I could have it. I don't recall there being a ton of info online about AS back in 1999 (that I found), so there wasn't much to help paint the rest of the picture. FFWD 10 years and continued troubles functioning in the world, and it seems much more likely that I have it.

there is that 5% of me that worries that I don't, and I haven't a clue what to do if I don't. I'm just absolutely lost in life if this isn't it, and don't know how to fix all the problems I seem to be having...