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Too high-functioning?

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Atomsk
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02 Apr 2012, 2:38 pm

Callista wrote:
lundygirl wrote:
Trouble is, although I am 'high-functioning', that's only because I am so practised at acting NT and fitting in - and that comes at a high price for me, leaving me exhausted and emotionally drained. I withdraw from social interaction and become reclusive, then become depressed and lonely.
Exactly. Just because you are good at the NT act doesn't mean that your disability isn't real. But they often don't think of it that way. It's more like this: You and a profoundly autistic guy are both trying to buy a gallon of milk. It costs $3. You have $2.50. The other autistic has only 50 cents. Neither of you are going to be able to buy the milk--but because his problem is bigger than yours, somebody hands him $2.50 and he gets his milk. You're left standing there for want of fifty cents, wondering what you're going to put on your cereal.

That's exactly what happens, metaphorically. If you don't need a lot of help, people often think that you can get on without the help you do need. But however big the gap between your ability to cope and the world's expectations of you, if there's a gap, then you're still facing a barrier, and that barrier is just as real as the barriers facing people who are trying to deal with bigger gaps.


Very good way to phrase it.



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02 Apr 2012, 3:12 pm

lundygirl wrote:
I'm a 43 year old female...


43 year old male here, exactly the same experience. I went back again a year later, and that time they did refer me. Still waiting. Last time I checked they lost my records.


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Halligeninseln
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02 Apr 2012, 5:07 pm

lundygirl wrote:
I'd really appreciate your comments please. I'm a 43 year old female and have been having therapy to deal with anxiety and depression. During this we explored the question of whether I am high functioning autistic. I'd done the online screening tests - AQ, EQ, etc plus the aspie quiz, and my results suggest that it's highly likely I am on the autistic spectrum/an aspie. This makes sense to me and answers a whole lot of questions I had about the way I am and the way I behave etc.

My therapist encouraged me to request a referral via my doctor, as I felt I needed to have a formal diagnosis - I'm the sort of person who needs answers! The referral went forward, but my doctor has just told me that the Community Adult Asperger's Team won't be pursuing it on the basis that I'm too high functioning and they cannot offer me any support services etc. The service is apparently vastly over-subscribed.

I'm now thoroughly confused, and also very upset. Does this mean they acknowledge that I am on the spectrum, but can't help me? Or that they think I'm wasting their time perhaps? Comments please.


The psychiatrist I was referred to wasn't interested in deciding whether or not AS was the real cause of my lifelong AS symptoms or not. She just asked what concrete problem I needed help with and once I said that I didn't need help with a concrete problem because I'd learned (by age fifty-eight) to live within my (obvious and otherwise inexplicable) limits she just sent me away, saying dismissively how was she supposed to know whether AS was the cause. It is a problem and I can empathise with your situation. It's not as if one wants access to services, just the objective, expert evaluation that one would hope is out there somewhere. And one only wants that because honesty to oneself seems to require it.



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02 Apr 2012, 6:52 pm

You may not need any help and they may be getting paid through a company that sponsors help and thats why they aren't interested. If you have the money, then see if you can find someone and take care of it private pay. I'm almost 48 and didn't find out until a few years ago. I'm married 25 years, with four kids and a grandbaby. I've worked, I've done what I want to do, I had trouble as a kid but I learned to do what I had to do. I still have trouble with certain things, but I always thought it was selfishness, stubborness, overreacting, etc. I thought I had problems with self control, but I don't. Hell, I keep a lot of my stress and things I want to react to inside. It's only when I get to a certain point. Again, I thought it was lack of self control. Knowing what it is, and how it works, and why certain things make me so mad I could spit, and why I do like things a certain way (called "your way" by others who want to say I'm selfish) or why I keep on until I get an answer I can understand, helped me to know why I'm like this in these ways, and what causes it, and what I can do to handle it better.

I don't need services, or help, or disability or anything like that. I tell my dx on pretty much a strict need to know basis. I've had doctors who I didn't tell because it had nothing to do with the physical problem.

Knowing has really helped me more than any therapy could. I would urge you to check around and get a final answer for this, because a dx can really help you even if you are very high functioning (looks and acts NT in public, most of the time at home, etc). It can help you help yourself.

Just because we don't need services doesn't mean we can't benefit from knowledge.


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mushroo
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03 Apr 2012, 9:24 am

Is it worth getting a diagnosis in 2012, knowing the definitions are going to change in 2013?



OJani
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03 Apr 2012, 9:50 am

mushroo wrote:
Is it worth getting a diagnosis in 2012, knowing the definitions are going to change in 2013?

Maybe not. I could have avoided the issue I have with the label I was given, the PDD-NOS, which I hate to bits. On the other hand, it seems likely that the overall criteria for ASDs are going to be stricter (narrower).



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03 Apr 2012, 10:26 am

This kinda crap is why it pisses me off so much when people tell those who have no diagnosis to go get one and act as though they're just lying for sympathy or something by saying they're on the spectrum. I mean, I'd certainly LIKE to get diagnosed, but I don't know what good it would do me if I could even get it, and that's highly doubtful based on the experiences I've read about from other wrong planet members. I'm 26, I've held jobs, I've always been pretty intelligent, but I never understood and I still don't understand a lot of social things.

I analyze the ever living s**t out of everything, and I have this incredible natural curiosity that I can't ignore. And if someone tells me to do soemthing, and I don't understand it, I have to ask why. People have always thought I was weird, and I know I AM weird. I have trouble relating to a lot of idiotic social things, like the need to constantly upgrade your electronic gadgets and be on facebook 24/7, constantly telling everyone about every damn peanut butter jelly sandwich you ate... I never understood the whole rat race thing. I don't care if I'm "successful" or not. I just care that I can make enough money to live comfortably and not have to worry about whether or not i have enough money to pay my bills this time. There are many behaviors exhibited by a majority of people that simply baffle me. I don't know with 100% certainty that I have aspergers, but I know I'm sure as hell not NT.

People acknowledge that I'm weird, but then a few times when I tried to tell those same people who can't stop reminding me they think I'm weird that I think I have aspergers, they tell me I'm too normal, not dumb enough, not ret*d, etc. I explain to them the difficulties I have, and they just say "oh, we all have that." And according to one of my friends, I lived a sheltered life, and that's why I suck at being social. Whatever...

All a diagnosis would really do for me is answer a lot of questions. But I feel I've already found the answers without the diagnosis. I'm almost certain that if I tried to get diagnosed, I'd get turned away and told I'm too high functioning or something like that. And regardless, I have no health insurance, so I can't afford to see a doctor anyway.



lundygirl
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03 Apr 2012, 10:44 am

Thank you all for your feedback, it's helpful to hear other people's experiences and views.

OliveOilMom - I think what I find so frustrating is that I don't want additional support or access to services, I just want to know whether I am on the spectrum. It's about finding an answer - I know that my problems go beyond social anxiety, but have only recently realised that they may be because I have asperger's. But the diagnostic service available through our NHS seems to be aimed specifically at idenfitying those who need access to services.

Halligeninseln - your experience seems to reinforce this idea that diagnosis is purely to enable access to services. I'm sorry you didn't get the diagnosis you were seeking - it sounds like the psychiatrist you saw wasn't very interested in you as a person, but just wanted to see if you needed referring on elsewhere?

Trappedinhell - I hope they sort out your referral for you this time and that you progress through to diagnosis.

Mushroo and OJani - I hadn't thought of the context in terms of upcoming changes. I simply wanted to know if I do have asperger's - it's the need for answers that drove me on. But I understand what you're saying about the timing. Perhaps that's why the service is so oversubscribed at present?



lundygirl
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03 Apr 2012, 10:52 am

DerStadtschutz wrote:
This kinda crap is why it pisses me off so much when people tell those who have no diagnosis to go get one and act as though they're just lying for sympathy or something by saying they're on the spectrum. I mean, I'd certainly LIKE to get diagnosed, but I don't know what good it would do me if I could even get it, and that's highly doubtful based on the experiences I've read about from other wrong planet members. I'm 26, I've held jobs, I've always been pretty intelligent, but I never understood and I still don't understand a lot of social things.

I analyze the ever living sh** out of everything, and I have this incredible natural curiosity that I can't ignore. And if someone tells me to do soemthing, and I don't understand it, I have to ask why. People have always thought I was weird, and I know I AM weird. I have trouble relating to a lot of idiotic social things, like the need to constantly upgrade your electronic gadgets and be on facebook 24/7, constantly telling everyone about every damn peanut butter jelly sandwich you ate... I never understood the whole rat race thing. I don't care if I'm "successful" or not. I just care that I can make enough money to live comfortably and not have to worry about whether or not i have enough money to pay my bills this time. There are many behaviors exhibited by a majority of people that simply baffle me. I don't know with 100% certainty that I have aspergers, but I know I'm sure as hell not NT.

People acknowledge that I'm weird, but then a few times when I tried to tell those same people who can't stop reminding me they think I'm weird that I think I have aspergers, they tell me I'm too normal, not dumb enough, not ret*d, etc. I explain to them the difficulties I have, and they just say "oh, we all have that." And according to one of my friends, I lived a sheltered life, and that's why I suck at being social. Whatever...

All a diagnosis would really do for me is answer a lot of questions. But I feel I've already found the answers without the diagnosis. I'm almost certain that if I tried to get diagnosed, I'd get turned away and told I'm too high functioning or something like that. And regardless, I have no health insurance, so I can't afford to see a doctor anyway.


I can feel the frustration coming out in your words, and I think can understand why you feel that way. You know that you are different and think you know why, and then when you put a name to it people say, but that can't be so, you function so well... I guess they don't see or appreciate the effort that goes into 'acting NT' and controlling the emotions etc. Or understand that it's something you cope with on a daily basis.

Your comment about those who've been diagnosed encouraging others to get a diagnosis raises another issue, I think. I get the impression that some people feel that you need to have got a diagnosis in order to say that you are on the spectrum. Without that, the implication is that you are just pretending or claiming something you don't have. I haven't worded that very well so I hope it makes sense. It's the old 'self-diagnosed' issue, which seems so very controversial. My therapist has said that 'if the cap fits then wear it', and my doctor has said that it is highly likely that I have asperger's. That should be enough for me really, but I feel that I need an official diagnosis for it to be valid.



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03 Apr 2012, 11:37 pm

Callista wrote:
It's more like this: You and a profoundly autistic guy are both trying to buy a gallon of milk. It costs $3. You have $2.50. The other autistic has only 50 cents. Neither of you are going to be able to buy the milk--but because his problem is bigger than yours, somebody hands him $2.50 and he gets his milk. You're left standing there for want of fifty cents, wondering what you're going to put on your cereal.


More like they give him $2 and you're both left standing there, begging for someone to spare you some milk. Or decide you'll eat dry cereal. Unfortunately, there is only so much that can go around. If 1 in 88 people need services for autism, along with all the other disabilities and costs of society...the money tree isn't big enough. Really, not much you can do except make do.