Currently Getting Tested and... Afraid?

Page 1 of 2 [ 19 posts ]  Go to page 1, 2  Next

Dan_Undiagnosed
Veteran
Veteran

User avatar

Joined: 18 Jun 2011
Age: 35
Gender: Male
Posts: 639

11 Jun 2019, 1:59 am

Hey everybody,
I joined in 2011 after a friend joked I might be one of those "stupid geniuses" and suggested I get tested for an ASD. I didn't see how a diagnosis would really help. Once I found WP from google searches it seemed enough for a long time to just have a place to talk when I needed to and I also took a lot of reassurance from having things in common with people here.
But after having a bad year last year I decided I'd finally do it along with counselling for other issues. So now I've sat down with a specialist and we went over my personal history. Then in the second appointment we got through as much of the autism diagnostic questionnaire as we could (a lot of it relates to childhood stuff I don't remember though so she's going to call my Mum later in the week). Then next Saturday I have to go back and take an IQ/cognition test.

So why am I scared? I've been acting under the assumption I'm probably on the spectrum for almost a decade now. 8 years is a long time. I've been foolish enough, without a proper diagnosis, to let this become a part of my identity. Autism wasn't just a great potential explanation for a lot of questions I've had in my life, it was one I could even be happy with because it also had upsides and some positive aspects too, depending on severity.
So if autism is ruled out it will feel like having a piece of myself that I've nurtured and cared for ripped out unceremoniously, leaving a gap in my identity that will need to be replaced in order to answer those questions that still haven't been answered. And then there's the alternative possibilities. Oh god. I might as well just say it.

I have a deep abiding fear of having anti social personality disorder (think sociopath or psychopath). Part of that probably relates back to mean things people have said to me or about over the years. But even before I can remember being seen as or called a weirdo, at least to my face, I'd break out in a cold sweat while my Mum would watch TV shows like Law and Order or anything with crazy rapists and serial killers in it. It would make me feel uncomfortable and think, for some reason, what if I'm like that? And it's like it just snowballed from there. I second guess and judge myself as being sneaky or deceitful, even with this autism testing I catch a part of myself thinking "Oh you're just trying to trick them into diagnosing you!". It really sucks and makes me feel bad enough that, without my girlfriend seeing, I've even wept a little when alone or having my back to her in bed. It makes me wish I never even heard of ASD. Maybe I'd have just been better off knowing I was weird but just accepting it as a brute fact and getting on with life. Too late now.



Mona Pereth
Veteran
Veteran

Joined: 11 Sep 2018
Age: 61
Gender: Female
Posts: 1,730
Location: New York City (Queens)

11 Jun 2019, 3:38 am

I too began identifying strongly with the autistic community for a little over a year before I finally got my official diagnosis this year. (And I had begun strongly suspecting ASD back in late 2008.)

This is one of the reasons why I think the autistic community should explicitly include/welcome "autistic and autistic-like" people.

The diagnostic criteria are somewhat arbitrary, and change from one version of the DSM to the next. And many people simply do not have access to anyone qualified to diagnose adults with ASD, and/or cannot afford it.

So I don't think we should define our community based solely on decisions by external gatekeepers. We need, in my opinion, a way to explicitly include people who might or might not be "autistic" according to the psychotherapeutic establishment's still-evolving definitions and diagnostic procedures, but who do know enough to know that they have many issues in common with autistic people.

The very first autism rights organization welcomed "autistics and cousins." See Autism Network International: The Development of a Community and its Culture by Jim Sinclair. See also Reviving the concept of cousins by Mel Baggs. I personally think the term "autistic-like" is more obvious in meaning than "cousins."

Anyhow, what makes you think you might be like the "crazy rapists and serial killers" rather than like the rest of us here? If I correctly understand what anti-social personality disorder is, people who actually have it probably wouldn't worry about it all that much; they tend to be fearless are much more likely to be bored than worried.


_________________
- Finally diagnosed with ASD in May 2019, after having suspected it for over ten years, and after having deeply explored the autism community for over one year while waiting for and obtaining diagnosis.
- In longterm relationship with boyfriend who was diagnosed with Asperger's Syndrome in 2001.
- Long history of participation in various oddball subcultures.
- My "Getting to know each other" thread: Hello from NYC.


magz
Veteran
Veteran

User avatar

Joined: 1 Jun 2017
Age: 34
Gender: Female
Posts: 3,534
Location: Poland

11 Jun 2019, 8:03 am

One of the defining trait of psychopathy is inability to feel remorse. You don't sound like one.
Do you commit crimes being fully aware that they're crimes and feel good about it? That's antisocial.

The diagnostic criteria for ASD are still changing and have not crystallized yet. DSM is symptom-based, not mechanism-based, so it is inevitably flawed.
Keep calm and inform us of the result!


_________________
Keep calm and choose your battles carefully.


Teach51
Veteran
Veteran

User avatar

Joined: 28 Jan 2019
Gender: Female
Posts: 780
Location: Where angels do not fear to tread.

11 Jun 2019, 8:10 am

Mona is right. Sociopaths don't worry about being sociopaths. More likely you have an atypical way of processing emotions and have been told that you are unfeeling when you perhaps express caring in a different way.


_________________
My best will just have to be good enough.


jimmy m
Veteran
Veteran

User avatar

Joined: 30 Jun 2018
Age: 71
Gender: Male
Posts: 2,575
Location: Indiana

11 Jun 2019, 8:28 am

Good luck on the latest round of testing. Just answer the questions honestly. It sound like you have the jitters. Jitters are fairly common especially before a test. Be calm!

This reminds me of something I once read. One of the problems many Aspies experience is panic attacks. Someone with panic disorder may engage in the distortion known as "catastrophizing", by predicting a negative outcome for an event that they don't yet know how it will turn out, this negative prediction can actually make it more likely that what you fear will happen. "If I go to the store I know I am going to have a panic attack". You don't know that. For any situation that you do not know what the outcome will be, there is always a positive, neutral and negative possible outcome. Sometimes with Asperger's, you tend to focus on only the negative possible outcome.



IstominFan
Veteran
Veteran

Joined: 25 Nov 2016
Age: 54
Gender: Female
Posts: 10,860
Location: Santa Maria, CA.

11 Jun 2019, 9:58 am

I have resisted a formal diagnosis because I fear that I may jeopardize my employment and my friendships that I worked so hard to make. I fear I may be rejected or treated like a child, rather than as an emerging person. I fear that romantic love may be out of the question when it becomes known how much life experience I lack.



kraftiekortie
Veteran
Veteran

User avatar

Joined: 4 Feb 2014
Gender: Male
Posts: 62,809
Location: Queens, NYC

11 Jun 2019, 4:59 pm

It wouldn't jeopardize your employment. Your HR at the library, I'm sure, doesn't have access to those sorts of records; they are protected by HIPAA.

And you don't have to inform your friends of your diagnosis. It's not like you have a contagious disease.

I have a formal diagnosis of "schizoid personality disorder" from the time I was 15. I got this job when I was 19. They never knew about it.

I was diagnosed by a psychologist back about 1964-1965 with "infantile autism." I had a poor prognosis. It was recommended I be institutionalized.



dyadiccounterpoint
Velociraptor
Velociraptor

User avatar

Joined: 31 Jan 2019
Age: 28
Gender: Female
Posts: 438
Location: Nashville

12 Jun 2019, 9:28 am

I relate to almost everything you have stated.

I can't deny this notion of ASD is becoming attached to my identity. It would be nice to say it is simply a practical examination of strengths/limitations and behaviors so I can adapt proactively and with knowledge, but it's not that simple.

I suspect a lot of people feel that way. Otherwise, why bother with seeking diagnosis as an adult? There's not a lot that can be done by that point other than practicing executive functioning, social reading, and sensory soothing. You don't technically require professional opinion to realize this and make adaptations.

I've asked myself "why do you want to seek diagnosis?" and the answer is inevitably "emotional validation of my experiences." It is expensive for me to seek it. The expense is not conductive towards my short term or long term goals. Yet I will likely end up doing it.

I've also struggled with wondering if I was antisocial. I eventually decided I wasn't because I had a behavioral pattern of kindness and honesty as opposed to bullying and manipulation. I also feel high levels of fear and anxiety, which antisocials are not known for.

I hope you get the peace of mind and validation you're looking for :)


_________________
We seldom realize, for example, that our most private thoughts and emotions are not actually our own. For we think in terms of languages and images which we did not invent, but which were given to us by our society - Alan Watts


TinyHat
Butterfly
Butterfly

Joined: 12 Jun 2019
Age: 40
Gender: Female
Posts: 11
Location: New York

12 Jun 2019, 2:11 pm

I don't know what advice to offer, I bad with advice. But I recently went for an evaluation. Got a diagnosis which didn't totally fit and I'm kind of reeling from it now. I hadn't built up an identity much. If someone had told me a few years ago I was an Aspie, I would have laughed at them, but I spent the last year seeing all the similarities.

I've wondered if I was a sociopath, a psychopath, had NPD, and so on, and I got a diagnosis of SCD with an "If it was DSM-IV, I would diagnose you with Aspergers." It is disconcerting, to say the least.

I think though, you know yourself (and I should follow my own crappy advice). It's weird when you have an expectation and it isn't met. Especially when you are so sure. And in some cases, I say, just because the expectation isn't met doesn't mean yours was wrong.



Dan_Undiagnosed
Veteran
Veteran

User avatar

Joined: 18 Jun 2011
Age: 35
Gender: Male
Posts: 639

13 Jun 2019, 1:59 am

Hey everyone,
Thanks for your kind words and input. What I'm really taking away from this is;
1. Antisocial personalities wouldn't give 2 s***s about being antisocial.
2. I'm definitely not the only one to have felt that way about myself (in fact, the first person I ever heard admit that was John Elder Robinson in his book 'Look Me in the Eye' which caused me to burst into tears, pretty unusual for me).
3. There maybe be people with variants of autism that the current DSM is missing, which wouldn't be anything new I guess.

Mona Pereth wrote:
Anyhow, what makes you think you might be like the "crazy rapists and serial killers" rather than like the rest of us here?


I don't even know Mona. It was just like a hot, scary panic I used to experience. One thing that kind of helped overcome it somewhat was exposure therapy (not that I knew that's what I was doing at the time). I waited until I was alone and watched the first episode of season 1 of Dexter. I know this is ridiculously stupid but I was sitting there the whole scared and sweating as if I was watching porn and waiting for someone to burst in and catch me. Then when it was over I was just thinking more about the cinematography, the latin food and music that the show displayed and just how well written and original it was. Next thing I know I've watched all 8 seasons and became a fan lol. But in a lesser, everyday way I still just have this feeling. I would describe it as being dark, wet, clammy and clingy. Like I have this dirty old damp cloak of self doubt over my shoulders. I do have some other unrelated obsessive thoughts so maybe this is just another one I'll have to deal with. It just sucks that logic and rationale only abate it so much.

Thanks Jimmy M, I definitely have that negative catastrophising thing happening for sure. And yes, I've realised with time that sometimes it can actually lead to a self fulfilling prophecy. Dyadiccounterpoint, I can definitely relate to most of that as well. Especially the questioning of my motives for seeking diagnosis. It's not so strange that people should want to understand themselves better. But Tinyhat, your experience kind of summed up what I'm worried will happen. I don't know how I would take that but I'm now resolved to just find out one way or the other. And yes guys, I'll definitely post back here once I get my answers.



y-pod
Veteran
Veteran

User avatar

Joined: 16 Apr 2010
Age: 47
Gender: Female
Posts: 1,326
Location: Canada

13 Jun 2019, 4:06 am

I remember being rather scared of my tests, too. The thing is I'm the kind of person who always want to give the right answers. Of course it's impossible for autism testing. I don't know, I remember one of the tests was incredibly stupid and I had no idea what's going on, until the last page, when I realized I have misunderstood the whole thing. I was upset that I messed up so badly. My husband assured me that it must be an autism filtering rest, so failing it so badly meant I passed with flying colors. :D Anyway I was glad I got tested, but I still feel ashamed about some of the test results that I refuse to share the report with anybody. I paid extra for the psychologist to type up a one-page summary in case I need it. I still don't want anyone to know how I did in those tests. :o

Even if you don't "pass" the test, you probably belong here. If this forum feels like home to you then that's all that mattered.


_________________
AQ score: 44
Aspie mom to two autistic sons (17 & 15 )


PaperTrails
Butterfly
Butterfly

Joined: 13 Jun 2019
Age: 43
Gender: Female
Posts: 14
Location: England

14 Jun 2019, 8:49 am

dyadiccounterpoint wrote:
I've asked myself "why do you want to seek diagnosis?" and the answer is inevitably "emotional validation of my experiences."


I am newly diagnosed, just a couple of days ago, and I was absolutely terrified that they would say I'm not autistic for just this reason. Bullying caused me a lot of trauma in the past and I guess I had the idea that if I was not autistic it would somehow be my own fault all the sh**ty things happened (even though I know it's not, really). I can with my diagnosis look back and wonder if at the age of 4 it was that obvious to everyone but myself that I was different?

Before I got the result, however (had to wait 4 months after test), I just had to try to accept that I am who I am, diagnosis or not. Maybe the professionals might get it wrong, or maybe I just really relate to autistic people. Happy to be finally diagnosed though after wondering for 6 years.



ASPartOfMe
Veteran
Veteran

User avatar

Joined: 25 Aug 2013
Age: 62
Gender: Male
Posts: 19,608
Location: Long Island, New York

14 Jun 2019, 12:24 pm

PaperTrails wrote:

I am newly diagnosed, just a couple of days ago, and I was absolutely terrified that they would say I'm not autistic for just this reason. Bullying caused me a lot of trauma in the past and I guess I had the idea that if I was not autistic it would somehow be my own fault all the sh**ty things happened (even though I know it's not, really). I can with my diagnosis look back and wonder if at the age of 4 it was that obvious to everyone but myself that I was different?

Before I got the result, however (had to wait 4 months after test), I just had to try to accept that I am who I am, diagnosis or not. Maybe the professionals might get it wrong, or maybe I just really relate to autistic people. Happy to be finally diagnosed though after wondering for 6 years.


Congratulations

Yes is very common to be nervous about an assessment of any type but especially one with so many implications as an autism one.


_________________
Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

"The lunatics have taken over the asylum" - The Specials


Aspie1
Veteran
Veteran

User avatar

Joined: 7 Mar 2005
Gender: Male
Posts: 5,603
Location: United States

14 Jun 2019, 6:03 pm

One thing to be cautious of is unqualified or unscrupulous shrinks deliberately setting you up to get a bad test result. Most often, they'll do this by destabilizing you---acting in ways to unsettle or intimidate you, in order to skew the test result. The most important thing is: DO NOT let yourself get unsettled or intimidated, no matter how the shrink treats you. If you notice your shrink setting you up to fail on a particular test, there's a laughably easy way to get out of taking it: tell the shrink you already saw the answer keys somewhere. Since no shrink wants you cheating, they'll exempt you from that test. Check and mate!

I had a horrible experience myself, and I was getting tested for ADD too (not ADHD). The shrink looked like a 21-year-old bimbo, as opposed to someone older and wiser, which was a red flag in itself. She started off by trying waaaay too hard to pretend to be my friend; I caught on to the fakery even at a naive age of 12. Then, while administering the test, she refused to let me see what she was writing about me, ignored me when I asked her for clarification on the test prompts, and acted really pushy and aggressive.

On top of that, she talked in a flat, psychopathic tone. You know, like the famous line: "It rubs the lotion on its skin, or else it gets the hose again." Looking back, I wouldn't have been surprised if she said: "It draws its family with a set of colored pencils," rather than "Aspie1, draw your family with these colored pencils."

Very quickly, I became terrified of her, and felt like a cat alone in a room with a rabid pit bull. In the end, I got a result of "immature emotional development". At least the ADD result was negative. Read more about my experience here: viewtopic.php?t=375461.



Dan_Undiagnosed
Veteran
Veteran

User avatar

Joined: 18 Jun 2011
Age: 35
Gender: Male
Posts: 639

23 Jun 2019, 7:48 am

Just a quick update, my third appointment with the specialist was postponed by a week so I only ended up going this last Saturday for the IQ/cognition test. Now it will be a 2 week wait until I go back for her findings. I guess if I stay busy with work that will help pass the time a bit quicker. Now that I've unburdened myself here to you guys I do feel better about not getting an ASD diagnosis. I do think she's starting to lean towards some sort of generalised anxiety disorder. Especially after talking to my Mum for an hour on the phone and hearing how my selective mutism also included physical freezing (not walking in front of people until about 18 months but I would when I was alone). Apparently that's a big indicator of anxiety in children. She did to say to me "regardless of whether or not there's an ASD at play, you are anxious" so yeah, I can't deny that.

Once we were done with the cognition test on Saturday though (which included verbal arithmetic problems that I could only ask to hear repeated once :wall:) I was surprised to hear her say "you're really smart!" I told her I did feel comfortable with some aspects of the test (like the ones where you have to change shapes around in your head to figure out which piece is missing etc) but I knew I was pretty bad at maths. So some areas would be good but others would bring me back down to average. And she was like "No, I think you're better at maths than you think you are. You were quite good across the board" then she showed me, without doing a proper tally yet, that most of my scores were looking above average so that "you might end up showing as gifted".
I really don't know what to make of that. Especially after she herself saw that my school grades were nothing to write home about. I sure as hell don't feel gifted. What good is that type of intelligence if it isn't applicable to life in general?

Anyway, 2 more weeks and I think I'll at least get a diagnosis of an anxiety disorder which will at least give me some answers and ideas for moving forward. I hope everyone here is well. Take care.