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quietowl
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08 May 2015, 6:19 am

ok so after much deliberation I decided to go see my gp to see about getting referred to a specialist, or getting some kind of help for suspected asd. it wasn't a great experience to be honest.
I walked in sat down, after I finished trying to explain, I was told that I look perfectly 'normal' and that there's probably no issues. I think she took one look at me, (I'm 29, fairly well groomed and dressed etc), and decided what the inside of my head looks like from that. I didn't know what to expect, but I really thought at least I would be taken a bit more seriously.
The doctor mentioned some things about possible depression, and started reading out a list of 'Tell tale signs of autism' from a computer. Then I was given a helpline number to phone and sent away. I was in there for less than 5 minutes.
so I'm no better off, more I just feel like I at a total dead end. How am I ever going to understand myself if the professionals don't even seem to think it's worth looking into?
Is it just a case of they'll only help if they think it's life or death or something? Or if someone can't dress themselves in the morning then it's worth helping them, but until you get to that stage, you're on your own? Don't know what to think now



cavernio
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08 May 2015, 8:31 am

No, it's that you're unable to communicate properly the problems that you do have because that is one of your problems, and they interpret this as 'this person doesn't have many problems' because, as you pointed out, you're put together and could easily not have done any of the things like stimming or pointedly not looking at them, that people use as gauges.

Try again. Make a list this time. Make a list of things you DO (because they always want to know your actions, never your thoughts it seems), and then make a list of your thoughts and interpretations of yourself.


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GwinnaUnbound
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08 May 2015, 8:56 am

I would find a different doctor and go in with a written list of symptoms.



quietowl
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08 May 2015, 12:22 pm

I honestly don't think I could do that again, I feel like it was a waste of time. How am I supposed to explain how my head works to someone who can't see it, and can only see what I look like from the outside? of course I'm going to come across as fairly 'normal', I've been working for 30 years to come across that way to people!
The doctor straight away went for the idea that I might be depressed, which I think I have suffered with in the past, but the depression I have had was more as a result of the way my brain works, not just something that appeared on its own. I've had these issues as long as I can remember, I can't have been suffering from depression as a 6 year old kid surely?
it feels like my brain IS different to most people I've met, not "the same but having a few 'problems'" , I don't feel it will ever change, I just want to understand myself then I can feel a bit more settled in myself and not like I'm doing anything wrong. talking to the doctor was so pointless, I may as well have been trying to explain the colour green to someone who only sees Black and White. I now pretty much feel worse than I did before, definitely not what I was hoping :(



cavernio
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08 May 2015, 4:09 pm

That's like, every experience I have within the medical profession, disappointing.

You could potentially also just go in there when you're really riled up, make a scene, meltdown or shutdown, and then they'll know that the's actually something wrong with you. And I'm only half joking. I've heard from so many people that doctors ignore their complaints about pretty much anything until they like, break down and cry in their office.

It -was- a waste of time in that the outcome you wanted wasn't forthcoming, but that just means if you still desire that outcome that you would do well to have a different approach. That's why I mentioned the list, that's why other people are telling you to try a different doctor. Even if you have to go through it 10 times before finally getting the outcome you want, its a f*****g pain in the ass, but it's probably worth it.
I do not suggest going to another doctor actually. There's a lot to be said for going to the same doctor over and over for the same reason because what they did was entirely unsatisfactory.


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btbnnyr
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08 May 2015, 4:51 pm

You should make a list of impairments, otherwise there is no reason for referral for autism diagnosis.


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tall-p
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08 May 2015, 6:04 pm

quietowl wrote:
I was in there for less than 5 minutes. so I'm no better off, more I just feel like I at a total dead end. How am I ever going to understand myself if the professionals don't even seem to think it's worth looking into?
The professionals don't think your claims are worth looking into because there is no treatment. There is nothing for them to sell you to make you "feel better." In my opinion you are better off not being in their clutches, than being "in treatment," and taking some bogus pills from some "doctor" once or twice a month who claims to be trying to make you feel better, or understand yourself.


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RhodyStruggle
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08 May 2015, 6:17 pm

First time I went to a professional (a psychologist) with my concerns about possibly being autistic, he had me do an MMPI (which as far as I know has no validity whatsoever for diagnosing autism) and after a few sessions told me I couldn't be autistic because I had okay eye contact and I smiled at jokes.

Took me about 2 years before I tried again but the second time the person asked me if I'd tried getting a diagnosis before, I explained about the first attempt and that I fake eye contact by looking at people between the eyes or at the bridge of their nose (still difficult but not as much so), and that I have learned how to "read a social script" and recognize and react to humor appropriately. Of course the second time around I had my ADOS-2 test results to show the doctor before I even set the appointment, so she had a lot less wiggle room to dissemble than the first one did.


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AspieUtah
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08 May 2015, 6:40 pm

btbnnyr wrote:
You should make a list of impairments, otherwise there is no reason for referral for autism diagnosis.

Yes. Start with the pretty exhaustive list of characteristics by Tony Attwood ( http://www.tonyattwood.com.au/index.php/about-aspergers ). For each of the characteristics that match yours, list one or two examples with some detail.

If you have characteristics which aren't in the Attwood list, simply add them to your own list.

Showing this to your practitioner (or another) will help them to understand immediately that you have given the idea some consideration.

Good luck. :)


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08 May 2015, 6:46 pm

RhodyStruggle wrote:
First time I went to a professional (a psychologist) with my concerns about possibly being autistic, he had me do an MMPI (which as far as I know has no validity whatsoever for diagnosing autism) and after a few sessions told me I couldn't be autistic because I had okay eye contact and I smiled at jokes.

Took me about 2 years before I tried again but the second time the person asked me if I'd tried getting a diagnosis before, I explained about the first attempt and that I fake eye contact by looking at people between the eyes or at the bridge of their nose (still difficult but not as much so), and that I have learned how to "read a social script" and recognize and react to humor appropriately. Of course the second time around I had my ADOS-2 test results to show the doctor before I even set the appointment, so she had a lot less wiggle room to dissemble than the first one did.

Ugh. The MMPI (and most multiphasic tests) is about as accurate as reading tea leaves, in my opinion. And, no, it gives very little useful information regarding ASD, except maybe depression and anxiety.

Hehe. I like how you cornered the second diagnostician. I always do my homework for weeks before stepping into a professional's office. I end up usually knowing as much as they do, though I try not to show it. But, isn't the ADOS test diagnostic in and of itself? Why did you need to show it to a second professional?


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Diagnosed in 2015 with ASD Level 1 by the University of Utah Health Care Autism Spectrum Disorder Clinic using the ADOS-2 Module 4 assessment instrument [11/30] -- Screened in 2014 with ASD by using the University of Cambridge Autism Research Centre AQ (Adult) [43/50]; EQ-60 for adults [11/80]; FQ [43/135]; SQ (Adult) [130/150] self-reported screening inventories -- Assessed since 1978 with an estimated IQ [≈145] by several clinicians -- Contact on WrongPlanet.net by private message (PM)


RhodyStruggle
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08 May 2015, 7:32 pm

AspieUtah wrote:
RhodyStruggle wrote:
First time I went to a professional (a psychologist) with my concerns about possibly being autistic, he had me do an MMPI (which as far as I know has no validity whatsoever for diagnosing autism) and after a few sessions told me I couldn't be autistic because I had okay eye contact and I smiled at jokes.

Took me about 2 years before I tried again but the second time the person asked me if I'd tried getting a diagnosis before, I explained about the first attempt and that I fake eye contact by looking at people between the eyes or at the bridge of their nose (still difficult but not as much so), and that I have learned how to "read a social script" and recognize and react to humor appropriately. Of course the second time around I had my ADOS-2 test results to show the doctor before I even set the appointment, so she had a lot less wiggle room to dissemble than the first one did.

Ugh. The MMPI (and most multiphasic tests) is about as accurate as reading tea leaves, in my opinion. And, no, it gives very little useful information regarding ASD, except maybe depression and anxiety.

Hehe. I like how you cornered the second diagnostician. I always do my homework for weeks before stepping into a professional's office. I end up usually knowing as much as they do, though I try not to show it. But, isn't the ADOS test diagnostic in and of itself? Why did you need to show it to a second professional?


I got it done for free by participating in a research study. So the test results were stamped "For Research Purposes Only," so I had to get a medical professional to provide an "interpretation" of them.


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AspieUtah
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08 May 2015, 7:35 pm

RhodyStruggle wrote:
I got it done for free by participating in a research study. So the test results were stamped "For Research Purposes Only," so I had to get a medical professional to provide an "interpretation" of them.

Oooh, that's cool! Too bad the results weren't acceptable, but the information alone must have helped convince everyone that you knew what you were talking about. :D


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Diagnosed in 2015 with ASD Level 1 by the University of Utah Health Care Autism Spectrum Disorder Clinic using the ADOS-2 Module 4 assessment instrument [11/30] -- Screened in 2014 with ASD by using the University of Cambridge Autism Research Centre AQ (Adult) [43/50]; EQ-60 for adults [11/80]; FQ [43/135]; SQ (Adult) [130/150] self-reported screening inventories -- Assessed since 1978 with an estimated IQ [≈145] by several clinicians -- Contact on WrongPlanet.net by private message (PM)


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08 May 2015, 10:58 pm

RhodyStruggle wrote:
he had me do an MMPI (which as far as I know has no validity whatsoever for diagnosing autism)

I think that it's for ruling out personality disorders and substance abuse/differential diagnosis.



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08 May 2015, 11:11 pm

Several months before I was diagnosed, I remember asking my physician (during a physical) for a referral. He basically said the same thing to me. That I seemed to have 'normal' social skills.

It was around this time that I started to document all of the symptoms. At the time of my diagnosis, I provided the clinical psychologist (who diagnosed me), with a 50+ page, document that was organized by symptom.

Had I presented the physician with this same documentation, at the time of my physical, I am certain that his response would have been different.



sepikmari
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09 May 2015, 9:01 pm

Do you keep a journal?
I write a lot of stuff down when I find myself in situations that baffle me.
(If you'd like an example, I started a new thread under the Members Only section called Short Anecdotes.)
I find writing stuff down helps especially to look for common things I seem to do that people don't like.
It then helps me when I have to talk to a therapist. Just an idea....

Yeah, just because you can train yourself to do something, like make eye contact or force a laugh just because you see everybody else is cracking up, doesn't mean you're "normal" - you're just acting like a cover up.

Besides, who trained the therapist? I bet its somebody who is clueless in knowing how we FEEL or think - just what they've read in textbooks or some idiotic test some NT made up. I hate being shoved into a confining box.



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10 May 2015, 9:46 am

starkid wrote:
RhodyStruggle wrote:
he had me do an MMPI (which as far as I know has no validity whatsoever for diagnosing autism)

I think that it's for ruling out personality disorders and substance abuse/differential diagnosis.


Well yeah, but that's backward. Autism has chronological priority over a personality disorder so if anything you have to rule out autism first before a personality disorder is considered.


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