Should individuals with Aspergers be diagnosed at all?

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I strongly suspect that I have neurological differences but they haven't led to significant impairment for me. It's possible that this is because I have very successfully been able to shape my world, enough for me to get by.

I don't really care who thinks I do or do not have AS. There are so many definitions out there it's really confusing. It doesn't particularly matter to me on what side of the clinical line I fall. I'm not going to parade about telling the world I have any sort of condition or difference. Most wouldn't understand anyways.

I have always known I was different. I just never would have suspected why

My assessment made me feel even more confused as a child because no-one tried to explain it to me.

People kept saying that there was something "wrong" with me that had a name.
This made me feel angry and perhaps a little persecuted.





Oh I got these all the time, even after I was assessed.

Again, the teachers meant well but were unfortunately cluessless as to how they should help me. Like-wise I was socially clueless as to what I was doing "wrong"; why everyone had to constantly chatter all the time and why everyone was so angry/hostile towards me.

There was miscommunication and cluelessness on both sides even while I was labeled.

Some people meant really well, but honestly didn't know how to deal with me or that the school environment itself was affecting me.




So do I!

I stress this again: there was miscommunication, but some people meant well, others were horrified at my label.

I just think in hindsight, that that environment was not the best place for me at all.
I would've benefitted from different teaching styles/ways of working.

I was singled out a lot of the time and bullied by some of the teachers/kids.
The AS label made me an easy target.
Many of the kids wouldn't let me join in their games because I was "being helped".
People formed stereotyped expectations of me and excluded me from participating in certain activities.

I was also taken out to a small room and given a very general "shoe-string budget", "one size fits all" special education lesson. It made me feel stupid and unwanted, though the room was peaceful and quiet. It also held me back in my studies and made me feel resentful towards school.

People were so confused at the time though, me especially.

All the doctors, teachers, adults, seemed so afraid of this unknown label.

YES YES YES.....PLEASE we do NEED diagnosis....or at least most of us do.

I was born in 1958 to a single parent. Yes it was highly unusual and 'not looked upon favourably' back then. I had no idea who my father was, what my heritage was, where my Jewish looks came from (I was made to go to church twice a week, Sunday school, Guides and all things Christian). I was never told anything, just that he was in the US airforce.

I was different alright, a bastard in a society that at that time, could not accept the circumstances of my birth. I had nothing on my birth certificate for father and was clueless, despite asking and asking over and over. Everything was kept a secret. But not only did I have a clue where I had come from or from whom, I was different in other ways.......could never put my finger on it, but I couldn't function like my schoolmates. I was always being excused for something or other. My mother always just raised her eyebrows at my antics. For me looking back my childhood was racked with hurt and curiousity, fear and insecurities.

But it was not until my children came along that I realised that they were different too. Once I had made the discovery of Autism....I was like a dog with a bone. I wanted to know about it, what it was and how it made us different. It was soon clear I was on the spectrum too. Oh my it was such a RELIEF. I had been prescribed Antidepressants, benzo's, MAOI's and told I was a bit crazy aka Manic Depressive!! I felt mad so therefore I must be??

To discover that I was on the spectrum was to discover WHO I WAS.So for me it was LIBERATING. Now we have diagnosis (all of us), it is easy peasy, and we have NO support at all. We know WHO WE ARE! That is a basic human right......I never had that privilege. But now you will be glad to know in the last 2yrs I have tracked my dad down in California. We are not in touch now, too much time has gone by and memories are sore. But I have discovered a sister!! ! Haven't met her yet, too broke to make the journey to Longbeach, but I am working on it..slowly! And my mother?? The rift was too big, we have not spoken for 2yrs. It ripped the family apart. Every child deserves to know WHO THEY ARE.

Anyway that is my experience, just had to share it with you! The spectrum is a wonderful place to be provided you know you are there!! We love it and we wouldn't swap places with anyone!! You just got to learn. That is what Jelibeans work is all about.
www.jelibean.com/

why does "contacting a support group" = "go around telling everyone"?
The OP is obviously concerned enough to want to talk to somebody. Aren't support group supposed to be supportive? I wonder who is the one lacking empathy here? Is it the kind of groups that parents gather together ranting about the most minute incidents all day? I just don't understand why is she in a support group in the first place.

As for inflicting a diagnosis on children which adults would not want? I think the diagnosis should be about the children, not the adults. I agree that a tolerant environment is far more effective for the children, but that's because that's what I believe would work for them, not because the adults would feel better.

To go slightly off topic momentarily: When I went to an attorney to file for SSDI, somewhere during the course of the consultation, he asked me if my symptoms had gotten any worse since my diagnosis - apparently in his experience that often occurred. I was quite puzzled by the question at first - I couldn't imagine how something I'd had from birth could suddenly become 'worse' just because it now had a label.

Later, I realized there probably was something to the idea, though. I think that once I knew - once I realized how hard I had been struggling on a daily basis to 'fit in' and appear 'normal' for all those years - finally having a document that said 'You're not one of them and never were', I felt less obligated to keep up the act. I could finally breathe and be who I really was. The mask could come off. So from the outside, it might have appeared that my AS symptoms 'got worse'. Truth was, I just dropped the NT act. And feel much better for it.

Back to topic: The reason for having the label is the access it gives you to assistance. If the symptoms are not pervasive enough to warrant diagnosis, then you don't need assistance, therefore don't have a disorder.

All these replies are fascinating, thankyou all.

Jelibean, thank you for such a lovely story.

AmberEyes, your account of what it's been like to grow up with a diagnosis is so exactly how I guessed it might be... I have to admit that in spite of having had some contact with classic autism, and in spite of many people over the years asking kindly me was I autistic "or something", it never ever occurred to me that it might be useful for me to find out more about it. There are many symptoms that I don't think the general public are at all aware of, and the positive aspects are not well known at all.

I think that for a child, the diagnosis is only a start. Even where provision and expertise are comparatively good, help-providers aren't experts in every aspect of every condition and variant. My son is helped by my research, and by my insight into his POV since I've realised I have AS and have adapted.

This sounds too vague. My son's school is sympathetic and willing to help, but they still need me to explain to them that, for instance, when he says he's fine, it doesn't mean he doesn't need anything.

As an adult, it helps me a lot that I'm effective and recognised in my work. I can be unapologetic about my eccentricities because people respect my abilities. Since realising I have AS, I feel less guilt, too: I'm not defective, I'm different.

Slightly off-topic, but does tie in...

When I learned about AS from studying about my son's diagnosis, I was struck by how much it resonated in me. So I took several of the online tests to get a benchmark; then I asked several (20+) people to take the same tests so I could gather a comparative sense of their accuracy. Then I asked them to tell me how they remembered me at various stages in my life - I can't "see" myself in many situations, so I often rely on feedback from others. Then I brought it up with my doctors, who then disagreed. While not 'officially' diagnosed, I went with the doctor who was willing to research AS in adults over the one who interrupted me mid-sentence to assure me he knew what the problem was without any assessment or testing, who has AS as 'Occam's Diagnosis' for me at this stage, albeit highly adapted. (It is important to remember that adapted and successful are two different things; I function much better in some areas than others.)

It has helped me immensely, learning about it even at age 31. Yes, some problems have become more severe... but I like myself for the first time in a long time. I can accept the hows and whys without holding myself to a standard that is not only unattainable, but unsuitable for someone like me. I've been upfront about it with people; I've told some groups of my students about it, as they are able to both learn more, and it helps them to understand my 'quirks' when working with them.


M.

Yes and no. Sometimes, it can be a relief for someone to know that there's a name for what is wrong with them and that they're not simply an a**hole, messed up, whatever.

Some people on the other hand would rather not be seen as a diagnosis first and a person second, which is sadly what often happens, and I understand that too.

That sucks.

Sadly it seems to be like that for a lot of ASers. I knew someone whose younger brother had it, and they way their mother reacted to the diagnosis, you would have thought he had cancer or something. She made my friend go to counselling to "deal with the fallout". WTF? It wasn't the sister who had AS...

Asperger's should be diagnosed otherwise how do you get help with things?

I, at times doubt my self dx because I read here at W.P. that most are incapacitated by it and seem not able to self-sustain.

Some thoughts on what made me think I'm on the spectrum here:


>When younger in school(elementary) ,I was so scared , and I didn't know really why and always dreaded that 'sunday night' , the night before school.
I was so confused by it all as I just stood by and felt so awkward towards it.
My teachers never knew why I was so unhappy as they noted this on my early report cards.

>In adult life it was brought to my attention about poor eye contact and was asked "if I needed to see a pyschiatrist" about it or asking "have you been sexually abused" or hearing in a roundabout way that I can't be trusted because of this.
(At the time this offended me greatly by such questions as this evidently slipped by in school and home as this wasn't an issue there.)
M.D.

>Married at 36; my wife was one to let me know of my obssesions as " not normal" and it took a long time for me to see this a problem in our marriage as she would reference these as " the other woman".

>I played a short segment on u-tube about aspergers for my wife and it was a 10 question query.
I asked her "do I fit" and she was amazed that all 10 applied as if it was written just for me.

In the past before I was aware of aspergers : I've always thought of this as an some ' unknown syndrome' that I had , and if it was in any of the least bit worse I wouldn't have been able to function and work.
With the schizhoprenia ,suicides or just the extreme familial eccentricities ; I just thought this was a manifestation of that in some unknown way.
Eventualy worn down in this world as my nerves were a wreck; I went to see a phyciatrist a year or two before before it was known in the U.S. and we came up with nothing at the time.

These things are less intense now as I have force- adapted and I somewhat believe it would take a skilled doctor to decipher me as I don't look classic.
I recently queried my family doctor about it at a physical ,as he does have a dsm-4, but said " I dont think so" because we couldn't talk the way we are conversing.
M.D.

Informal assessment and labeling, not strictly a diagnosis.

I find it kind of disturbing and inaccurate to have aspects of my personality (especially the positive ones) referred to as "symptoms".

This is one of the reasons why I decided to study science for a while.
The whole idea of giving someone a medical condition without any physical evidence drove me crazy over the years.

I studied hard science, but found no answers there so for a while I thought that the whole thing was a "fraud" or a conspiracy.

I kept saying: "I don't understand."
Because my personality was like those in my family.
I don't understand why the school kept forcing me to be social, chatty and express my feelings, while my relatives kept telling me to be respectfully discrete, honest and quiet. That confused me for a while. Like two different cultures butting up against each other. Two different ways of doing things.

The only possible explanation I can fathom for all of this is that the western scientific method and way of thinking is AS or was devised by people with AS traits.

Therefore, any proper balanced analysis of AS is going to need a whole new method of thinking that takes into account people's different mental operating systems, and can record these in some kind of physical and tangible way. This should also take into account the mental operating system of the observer, as his/her brain own wiring and "lens on the world" will add bias to the results.

How do you study people's social interactions and emotions and record these in a systematic way?

What about introspection?

That's what I'm going to do. Hide it. An explanation for the qualities you listed will be dismissed for some other undesirable trait. That is my experience. So I choose to be weird and anti-social above a being pathetic, irresponsible, and a maker of excuses.

Aunty,

We adults with AS are not welcome in groups of parents of kids with AS. They DO NOT want us anywhere around them. The reasons have been discussed in a thread recently (I forget which).

What you experienced was an instance of "NTs do things with conversation" (see my thread of the same name) and not a sharing of the woman's true feelings and thoughts. She was trying to be purposefully outrageous to put you off so you wouldn't join the group. We Aspies tend to take messages literally, but her message was not literal at all. Don't be naive and misled to believe that she actually believes the things she told you - she was just trying to put you off the group.

My experience is very limited, as I was only diagnosed with AS last month (at 35 years of age), but I'll share my thoughts on the topic so far.

I think a diagnosis should only be sought if there's some issue that's causing an unmanageable difficulty. In my case, I suspected I might have AS a few years ago, but I could manage things in my life (aside from not having many friends) without too much difficulty. This past year, however, has been unusually stressful and I've been responding to things in ways I couldn't understand or control, up to and including meltdowns (which have been fairly rare in my life and nowhere near the intensity of my last episode). That's when I decided to get the diagnosis (of whatever was behind my issues, AS or otherwise). I wanted to try and understand what was happening and figure out a way to deal with it that wasn't counterproductive. I've since learned that the stress I was under built to a point that the different coping mechandisms I had come up with over the years weren't working. The result was that my more autistic traits started coming to the surface when before I was able to suppress them somewhat (with effort).

Another thing I had been considering is whether or not I would've wanted a diagnosis as a child (AS wasn't being diagnosed in children until I was already out of high school). Looking back I'm glad I wasn't. I knew I was different and didn't really fit in, though I tried. I think I had better opportunities to learn without the label than I would've with it, though I admit I don't fully know how special education programs work, so I could be wrong. I do think I would've liked the diagnosis as a young adult, say late teens to early twenties, as it might have made a difference in my relationships with others and may have enabled me to focus my energies on academic and occupational pursuits that fit me better, rather than trying the hit-and-miss approach.

Of course, further thought on the matter may make me change my mind about my opinions, though this is where they stand now.

You know you have people on this board who care about you. I was just crying about you not being able to relax.