So, I survived the visit to my family doctor.....

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Fluke83
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03 Aug 2010, 10:55 am

...But since I was mostly preoccupied with trying to keep myself together during the visit I was totally unable to give any intelligent answer when he asked me to describe how I felt I was experiencing my difficulties..
He said he needed me to tell him so he could formulate a good referral to the AS specialists for an assessment... I mentioned a few things I did or had difficulty with that I meant was due to AS, but he said that he couldn't go by that alone.

I actually told him flat out, between a few rogue tears and "trying not to cry"-grimaces, that I actually was not able to give any good examples or good descriptions right at that moment, and the visit pretty much ended with him telling me to try to write him a letter about it instead, that he would not let get further than his office, but that he would use to formulate his request to the specialists....

I left feeling totally wrung out and like I'd made a big fool of myself, not because I didn't think he took me seriously, which I really believe he did, but because I was unable to "make my case" properly..

Problem is, I STILL have no bleeping clue as to what to write to him..! How I feel I experience my difficulties?!? I'm confused just by the question itself!

I asked him if i should start with the diagnostic criteria and tell how I felt I fit them, or tell him about things about me I felt was due to AS, but no. "How you feel you're experiencing your difficulties".

I know, it shouldn't be so hard, in the hours I have had to digest it I think I will try to say something about how I experience conversations, various social encounters at work, home, family, my non-existent friends and such, but just a couple of weeks ago I didn't even know that wasn't how EVERYONE experienced these things... Or maybe I'm just freaking over nothing..
Or maybe freaking about for the first time I can remember trying to tell someone, anyone, how I FEEL... It's just plain scary..

Most of the time I'm not even able to analyze my feelings apart from knowing that they are generally good or generally bad, anything beyond that is foreign territory, heheh..

I don't really know what I wanted to achieve with this post, but I needed to vent some of the stress, maybe even someone has some useful tips..

At the very least I feel pretty brave having gone to my doctor in the first place, heheh (Oooh, look I just put a correct name to a feeling, GO me..!)



davethenat
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03 Aug 2010, 11:03 am

Fluke83 wrote:

I know, it shouldn't be so hard, in the hours I have had to digest it I think I will try to say something about how I experience conversations, various social encounters at work, home, family, my non-existent friends and such, but just a couple of weeks ago I didn't even know that wasn't how EVERYONE experienced these things... Or maybe I'm just freaking over nothing..
Or maybe freaking about for the first time I can remember trying to tell someone, anyone, how I FEEL... It's just plain scary..



At the very least I feel pretty brave having gone to my doctor in the first place, heheh (Oooh, look I just put a correct name to a feeling, GO me..!)


Vent away! This is exactly the place for such words. I personally think your actions are VERY brave, Fluke. Nobody wants to acknowledge things about ourselves that we may not like, and having an outside "authority" dictate what "defines" us.

You are on a journey of self-identification, and this is simply the first step of many along the way. Chart your identification progress not identification perfection. Your plan sounds excellent and should bring you some great results.

You are not alone, and you will be able to give words to what you feel eventually. Even if you feel like being hard on yourself, know that there are those of us who have gone through the same thing and we were rough on ourselves too. We also won't be hard on you.

Congrats on taking the first step. Keep it up. We have faith in you.


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MONIQUEIJ
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03 Aug 2010, 11:13 am

congrats on your new start


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03 Aug 2010, 12:14 pm

I find that very odd wording. I too would be guessing what was meant. Or else I'd have to ask for an explanation. If I had to do it without further explanation, I'd go with writing about difficulties I have, my experience of them, including if I'm frustrated, or puzzled, or whatever.


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03 Aug 2010, 1:20 pm

This is a perfect demonstration that General Practitioners know nothing about Autism.


Its extremely ignorant to ask someone to describe how they feel about their condition and its affects, when they come to you for assessment of a disorder commonly marked by difficulties expressing or describing subjective emotional states. :roll:

If you have access to a Mental Health Counselor or a Therapist, they'd likely be more sympathetic to your cause.

Give yourself some time to recuperate from the stress of the visit, and when you feel you're ready (tomorrow or the next day maybe), start jotting down notes whenever you experience or recall an example of how an AS related reaction causes you a functional problem and how you think that relates to the DSM criteria. Eventually you'll have enough examples to sit down and put it all in some kind of coherent essay. Take your time, it doesn't have to be done all at once.



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03 Aug 2010, 1:37 pm

Fluke83 wrote:
... the visit pretty much ended with him telling me to try to write him a letter about it instead, that he would not let get further than his office, but that he would use to formulate his request to the specialists....


That is exactly how I am presenting myself for examination at the moment, at least in part, and I first heard about that when Willard mentioned his having already done the same. Somewhere I have a link to a website you might find helpful here, and I will come back and post it after I find it ...

At least to get started, here is a site I have found helpful:

http://www.asperger-advice.com/asperger ... dults.html


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03 Aug 2010, 2:35 pm

Willard wrote:
Its extremely ignorant to ask someone to describe how they feel about their condition and its affects, when they come to you for assessment of a disorder commonly marked by difficulties expressing or describing subjective emotional states. :roll:


I have been asked that so many times. And that "on a scale of 1 to 10, how X do you feel", where X seems irrelevant to the situation.

You could start with a search for something like "Asperger's diagnostic criteria" to get a list of common factors amongst people with AS, like http://www.aspergers.com/aspcrit.htm and you should also reflect on your lifetime experience - whether you have always felt the odd-one-out, or different, or had few friends. Relatives might have helpful input to whether you were different from siblings or from other children.



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03 Aug 2010, 2:40 pm

leejosepho wrote:
and I first heard about that when Willard mentioned his having already done the same.


Yeah, it wasn't part of the assessment or diagnostic process for me, but I did have to do it for Uncle Sam when I filed for Disability. I agonized over it, too. As if the Inattentive ADHD didn't make it hard enough to even focus on the task...describing the dysfunctions of AS in a way that a Non-Autistic can understand how hard it makes things...its like explaining something to someone who doesn't speak the same language.

I have the same problem when writing fictional characters - dialogue and action are simple, but other than extremes of rage and despair, emotional states are very difficult for me to put into words.



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03 Aug 2010, 3:27 pm

Fluke83 wrote:
...But since I was mostly preoccupied with trying to keep myself together during the visit I was totally unable to give any intelligent answer when he asked me to describe how I felt I was experiencing my difficulties..

I think in this case he could have meant that he wanted your perspective on your difficulties, rather than your feelings, although obviously including reference to how you feel (upset, confused etc) would still be part of that.

I've been wondering myself how it would be possible to even begin to explain things to a doctor, so your post has been very helpful - thank you.

Bear in mind that unlike a medical diagnosis of, for example, blindness, where testing can determine a level of impairment, an AS assessment is more subjective.

Children are diagnosed because perceived behaviours match diagnostic traits, but for adults, even if you are on the spectrum, a diagnosis may only be given as a result of demonstrable difficulties, even though the cumulative pervasive impact you experience can be significant.
Specific examples, a general summary of your pervasive traits and the impact of any sensory issues might be what is required.

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I left feeling totally wrung out and like I'd made a big fool of myself, not because I didn't think he took me seriously, which I really believe he did, but because I was unable to "make my case" properly..

In a way, that is actually an example of communication difficulties, and it certainly concerns me that I have no idea how to make my case, and anticipate a similar situation to yours.

Quote:
I know, it shouldn't be so hard, in the hours I have had to digest it I think I will try to say something about how I experience conversations, various social encounters at work, home, family, my non-existent friends and such, but just a couple of weeks ago I didn't even know that wasn't how EVERYONE experienced these things... Or maybe I'm just freaking over nothing..
Or maybe freaking about for the first time I can remember trying to tell someone, anyone, how I FEEL... It's just plain scary..

All of the above, including the inability to describe feelings, is a good start.
Refer to any occasions where other people have commented about facial expressions, strange interactions, poor communication, work difficulties. And also things which you avoid doing, that other people might not have trouble with.
Even if you only pass on to the doctor part of what you write down, the information will also be useful for the assessment.

Quote:
At the very least I feel pretty brave having gone to my doctor in the first place, heheh (Oooh, look I just put a correct name to a feeling, GO me..!)

Braver than me so far. Well done and good luck.



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03 Aug 2010, 8:15 pm

Fluke83 wrote:

Problem is, I STILL have no bleeping clue as to what to write to him..! How I feel I experience my difficulties?!? I'm confused just by the question itself!



I got the same problem. I avoid doctors because how do you say it, where do I begin, how could I possibly explain it in under a week. I have no idea either how to word it, it is and it is so bleeping obvious if you were around me. It isn't something that comes and goes or is kicked off, it is all the time, morning until night, day after day. If anyone pays attention they learn it is never gone and sometimes it is impossible to manage and sometimes it isn't. Well that covers it.....how can you help??

:?



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04 Aug 2010, 8:56 am

Mysty wrote:
I find that very odd wording. I too would be guessing what was meant. Or else I'd have to ask for an explanation. If I had to do it without further explanation, I'd go with writing about difficulties I have, my experience of them, including if I'm frustrated, or puzzled, or whatever.
It makes sense to me. The doctor is trying to tell impairments apart from subclinical traits.

Are you better at answering specific questions? If so... here we go:

Does your level of ability in reading others' emotions cause trouble for you? If so, how?

Do you have difficulty keeping up your end of a friendship? If so, how does it affect your social life?

Do you have problems with communication? With speech? How does your difficulty with communication affect your life?

Can you read body language? If you have trouble with it, do you miss information that would be important for you to know?

Do you have repetitive movements? Do they interfere with your other activities; or do people think they look odd?

Do you spend a lot of time on a narrow or very intense interest? Does this interfere with socializing, with your filling your responsibilities?

Do you have problems connecting with other people emotionally?

Is it difficult for you to communicate back-and-forth, rather than "lecturing" at people?

Do you make friends with people your own age? If not, who do you make friends with, if anyone?

See if you can answer those; maybe that'll give your doctor a better picture.


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Fluke83
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05 Aug 2010, 12:15 pm

Thanks for the replies, people, sorry for not coming back sooner, but it until today I haven't really been able to think about the visit or the letter without getting the shakes and feeling physically ill...

In one way I think it was really good of my GP to offer me the opportunity to write a letter, since I clearly was, and clearly told him I was unable to give any elaborations or descriptions when I was in his office. I had my hands full with trying not to cry (too much), simply because I find those kind of situations so incredibly uncomfortable.

He said, and I really believe him, that he really wanted me to get an appointment for assessment with the specialists, but to get me a better chance, he needed something more to go on from me for him to write a good recommendation.

I've been "trying out" different ways to write the letter over the last few days, both when awake, half-awake and asleep.. I'm still really, really uncomfortable about it though, but it's getting better...

Callista, your idea about specific questions really was a big help, I've always been better at answering specific questions as opposed to the dreaded "Tell me about yourself" or "describe yourself". The latter always has me completely clueless..!
Not only when it comes to me, but also about others..
I still cringe when I remember the meeting I had with my daughters daycare manager, about a form to be passed on the school, since she is starting school in a few days.. at some point I was asked to point out my daughters strengths and "good sides" and I went "Uhh...". The manager cleared her throat and offered some suggestions of her own...

Anyway, the replies has helped when it comes to sorting things out and trying to make sense. Still haven't started on the letter, but I can feel it coming on.. Thanks :)



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05 Aug 2010, 12:45 pm

This has possibly been covered already, but I recommend that you use a secondary resource like a list of AS symptoms or characteristics, or more than one. Sometimes you can find lists with anecdotal descriptions, which could be helpful (for example: this, not comprehensive though). Go through the symptoms individually, figure out which ones describe you and then think of as many examples as possible for each. It should be really easy this way.