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Hi - please advise on seeking diagnosis

Kusan38

My self portrait ^
I'm a 30-year-old female who has been thoroughly fascinated with Aspergers for months (with at least some superficial interest over the last few years).

I see some traits of it in myself, while other traits do not fit. This causes me a lot of uncertainty and fluctuating opinions of whether this diagnosis would suit me. This state is irritating-to-painful because, in general, I feel like I do not fit any category, but I want one.

Here are some of my traits that seem consistent with descriptions of Asperger's, followed by some traits that do not. (This is condensed from a 20-page Word document of my thoughts on the subject. Lol.)

Would anyone be willing to advise me on whether to seek a diagnosis?
I don't want any special services. I just want to understand myself.

--

Traits that may be consistent with Asperger's:
  • When I am trying to work/focus, I have a hard time filtering out background noise and can get very tense or even angry. I can be irate when too many people are talking at once. Sometimes I cover my ears during loud noises. (Then again, I turn my favorite music up to high volumes, so my sound sensitivity is mainly about things I can't control - especially people talking.)
  • I can have at least the appearance of a lack of empathy. A girl in college once said I had "no" empathy. This is not true, but I do find it challenging to truly put myself in others' shoes unless I've had a similar experience to one they're describing. I also have trouble feeling for people far away and unfamiliar to me - e.g. the victims of a tragic accident in another state.
  • I am asexual (no sexual desire). I've not yet done the necessary tests to rule out various physical causes. I'm having some reproductive hormone levels checked as a start.
  • Sometimes I react negatively to touch, especially unexpected touch. My best friend in middle school noticed how I seemed to feel awkward with friendly acts like hugging. Sometimes I startle when people touch me, and other times I simply find it distracting. I do know that I allowed my mom to touch me as a baby (she rocked me and nursed me). However I remember at least one or two occasions during childhood when she jokingly called me "touch-me-not." I can tolerate the touch of hair stylists. But with pedicurists I can feel ticklish and become tense. It's mostly social touches that feel awkward.
  • I'm somewhat routine. If something doesn't happen the way I expected, I can become worried or angry. E.g. if my roommate disrupts my habitual alone time at the end of the day, it can be distressing.
  • Did I ever have meltdowns? I am unsure. Sometimes I felt upset for a prolonged period over something that might not seem too significant. As a child I had these four glass sculpture things that formed a set, and my mother accidentally broke one while cleaning. I went into my closet and cried for... I'm not sure how long - 15 minutes? It seemed disproportionate to the trigger, in retrospect. I don't remember exactly how frequent such behavior was. However, if I was really upset and crying, I think I was just as likely to isolate myself as to seek an adult or peer. As an adult, I behaved awkwardly with a VIP at work, and she gave me a backhanded compliment that described my behavior as scatterbrained. I went home and cried and felt hopeless.
    From adult life: When my last landlady said I had five weeks to move because she had to sell her house, where I was renting, I cried myself to sleep.
  • I took the AQ test online a handful of times at different periods. My scores ranged from 32 to 38. Those scores suggest the possibility of Asperger's.
  • I have color-grapheme synesthesia (seeing letters and numbers as having specific colors). I also have irritable bowel syndrome and a generally anxious temperament. Some say those traits may occur more in people on the spectrum.
  • My mother said that some of my teachers were “amazed” with my ability to read and write early. Some mention "hyperlexia" in children with Asperger's. I don't know if I qualified as having that.
  • My parents and I can be unusual in our gestures of love and support. We don't say "I love you" most of the time. I have a hard time verbally expressing love. Sometimes I am supportive in awkward ways. One time my friend Jimmy’s dad died. At the funeral I gave him some Reese’s peanut butter cups, which I knew he liked, but realized belatedly was totally awkward. I mean, it was a funeral.
  • Some of my interests are very strong. I have played the piano and taken lessons since childhood, and first started experimenting with that skill by trying to copy music from videogames and Disney movies. In college/grad school I wrote 24 songs. I've always liked to draw and have lately become fairly good at realistic drawing - I had to practice at sketching the whole image rather than moving from one piece to another. As a child I was interested in animals, especially giraffes and butterflies. I wouldn't necessarily call myself a "little professor" on those interests, but they really pleased me. I would flip through an Audubon guide on butterflies and sometimes be able to name one near my house. I had preserved butterflies in boxes. I raised some butterflies with a kit. I knew the state butterfly of Florida, where I lived. I visited many butterfly gardens.
  • Eye contact seems to require too much energy. I wish I could experiment with not having to look at others' eyes for a day.
  • Do I stim? In grade school a fellow student once remarked that I was nodding my head to "music that isn't there." I still may do this when concentrating. As an adult I look at the ground while walking and try to step in line with tiles, carpet squares, sidewalk cracks or doorways. It's not out of a fear of something specific, or really fear at all. In my car I listen to my favorite music and make bizarre, interpretive gestures with my hand that isn't on the wheel. It must look odd to others but it's fun to me. When angry I may hit a wall (not hard enough to hurt myself) or pound my desk or do something else that is a physical expression. Also, I very frequently wiggle my toes in an alternating pattern (e.g. curl the toes on one foot, then the other, back and forth).
Traits that may be inconsistent with Asperger's / caveats that make it hard to know:

  • I do well on tests of reading facial expressions, including "reading the mind in the eyes." This doesn't necessarily mean I know how to respond. I'm not nurturing or maternal. But I do seem to recognize facial and body cues.
  • I can stand some busy places like malls, festivals and concerts. I do get frustrated with people in my way or too close surrounding me. But I will purposefully go to busy places if there's something there that interests me.
  • I wouldn’t consider myself exceptionally talented at some of the things many Aspies are supposed to do well – like gathering and memorizing an endless list of facts and statistics. I don’t know that I ever really do that. However I do feel gratification from having a “complete set” of something - I collect things, from a list of my favorite characters and a "life soundtrack" of songs since age 14 to the objects of my childhood, like crystal prisms and beanie babies.
  • While I might have been late in some things developmentally (my dad said I was late sitting up as a baby) and wasn't ever good at sports, I wouldn't say I was truly impaired. Not that I know of.
  • I was a good student who got good grades. I didn't show signs of a sensory or social-related inability to interpret the material.
  • My brother bullied me time and again, but there was never anything chronic or traumatic with school bullies. Mostly I felt somewhat disregarded by popular people. I usually had a few friends, who were usually a bit misfit-like themselves. I was not alone. But sometimes I felt odd or misunderstood.
  • I have worked in a public communications department at my job and dealt with people for years – however I’ve often felt ill-at-ease, even panicky, and ineffective about many of the interactions – and face-to-face interaction are NOT the reason I took the job – it was more about writing and making complex topics more public-understood in print. I went to school for biology and then a grad program for science journalism. I apply that education where I work, a marine lab. I'm not sure an aspie could handle my job. At the same time, I recognize all the pain it has caused me and my unwillingness to leave, regardless. After 7 years, my position has changed and I'm doing less face-to-face work, so it's gotten much better.
  • While I have heard that some Aspies do not show emotion well, and have a "flat affect," I have had a friend tell me he could see my emotion expressed – said I seemed to wear my heart on my sleeve. I think I actually have trouble containing emotion at times. But other times I can go quiet
  • Some say people with Asperger's are strong systematizers. I took a systematizing vs. empathizing test and got a systemizing quotient of 17 and empathizing 13. Both were considered below average. Lol. What does that mean? It was this: http://personality-testing.info/tests/EQSQ.php
  • It is hard to isolate possible Asperger's traits from those that might have arisen due to irritable bowel syndrome (IBS). IBS is part of the reason I am somewhat isolated in my time off. The presence of others can exacerbate it. I've had it since age 17. I likely became less social after getting it, but I was never a broad socializer. At most I usually have a few close friends.
 
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I had a similar attitude as you have toward Asperger's before I was diagnosed; I seemed to have some characteristics but not others. My son was diagnosed and my ex-wife kept urging me to get an evaluation. Sure enough, I was diagnosed as being on the spectrum. That is the key: it is a spectrum. There is high variability among us on which autistic behaviors we each have and how these behaviors affect our lives. Based on your list you share many of our traits.

I am profoundly thankful for my diagnosis because it explained my social difficulties. I had always been puzzled about why I had trouble communicating. Since my diagnosis four years ago I have made many changes. I finally understand the source of my social problems and am much happier. I interact differently and more effectively now but I also understand my limitations and accept them.
 
I went to school for biology and then a grad program for science journalism. I apply that education where I work, a marine lab. I'm not sure an aspie could handle my job.

I also studied biology and worked as a scientist. Some aspies can function pretty well in the world in spite of our discomfort.
 
Every section was over 70%, with a couple of 90's for me...gonna take this with me when I get assessed...Thanks! that was fun! I love calculating scores.
 
I tried it as well. One thing about scoring it confused me. Sometimes a given statement applied strongly to me in certain situations and not others. When that happened, I gave it half a point, and when it applied strongly in a more overall sense, I gave it one full point.

Scoring in that manner, it came out like this for me:

A – Deep Thinkers: %90
B – Innocent: %85
C – Escape and Friendship: %75
D – Comorbid Attributes: %75
E – Social Interaction: %70
F – Finds Refuge When Alone: %60
G – Sensitive: %75
H – Sense of Self: %78
I – Confusion: %70
Optional – Executive Functioning: %65
 
She didn't give a scoring template, the 89% was the number of questions which applied to me. Maybe we should have some NT friends take it and create a baseline!
 
If you don't need services I think it's usually better not to get a diagnosis or tell anyone (except totally trusted friends/family). That doesn't mean you shouldn't figure it out however. The knowledge is very valuable if you are trully HFA. But you are limited then to self diagnosis.

Autism has much stigma attached to it, negative stereotyping, etc. You don't want to go there if you don't have to.
 
I have scheduled a formal diagnosis appointment. I have two therapists involved who agree it can give me job protection, and insurance can pay for a weighed blanket, which is on the expensive side, and I think would be good for me.

I think if one is going to be open about it, one needs a formal diagnosis. At least in my case, where I have social skills and people are not going to believe it, if I need them to, otherwise.

It was a struggle to find a place that I felt comfortable with. Diagnosing an adult woman is a rare skill, and it took a while to find a place that asked me the right questions. It is 3 1/2 hours away, so I have to pay for a hotel room for 2 nights, since the testing takes a full day. And I am getting my insurance to pay for the test, so I am still ahead.

But that's my situation. If going through all this just gives you added stress with no benefit, there might not be a reason.

Regarding the stigma, I am not in any position to speak, since I went to school before autism was recognized, much less Asperger's. I was bullied as "the weird kid" and didn't really make friends until high school when I found an art crowd who valued intelligence and creative thought. I did okay with social skills, until the present, when I think it drains my energy in a frightening way.

Which is another reason to seek help, if needed.

As far as the stigma, I debated signing up here under an alias and new email, but decided against it. This is who I am, and I'm also out of the closet regarding certain family and my closest circle of friends. Work might be a tricky place to reveal, but then again, it might not be; I haven't decided about that yet.

But there are lots of situations where it would be an advantage, like job interviews. People will actually accept all kinds of UN-typical behavior if they can't put a label on it.
 
Well the question is: If one is diagnosed does one HAVE to tell anyone? Isn't it up to the person with the diagnosis?

This may be a naive question.
 
Well the question is: If one is diagnosed does one HAVE to tell anyone? Isn't it up to the person with the diagnosis?

Of course!

I'm not seeking a diagnosis for ME. I have no doubt in my mind that is what explains ME. I am getting it to reap the small crumbs of benefit it gives me, since I have health insurance AND they will pay for certain things I think I need. Like a weighted blanket and therapy.

But I'm still not sure who I will tell beyond some of my friends, who will probably feel better if I add, "It's official." My husband and brother have been "oh, yeah, that makes so much sense" and have been totally on board.
 
I suppose getting a diagnosis is not so much the issue, as long as it is kept confidential. The main factor with society is who you tell and who knows. Really it is no one's business but your own, unless you will need to identify it for some services or accommodations. Once the cat is out of the bag you can't put it back in.

Some people do accept it reasonably, but it is common for people to change their behavior (negatively) towards you once they know. This can even happen with close friends and family. Monitoring the overall public's perception of autism I would have to say it is mostly uninformed and sterotype laden or not good. And it and not improving. In fact in recent years it has gotten erroneously associated with nutjobs shooting places up. Such perceptions once established are hard to change.
 
I suppose getting a diagnosis is not so much the issue, as long as it is kept confidential. The main factor with society is who you tell and who knows. Really it is no one's business but your own, unless you will need to identify it for some services or accommodations. Once the cat is out of the bag you can't put it back in.

Some people do accept it reasonably, but it is common for people to change their behavior (negatively) towards you once they know. This can even happen with close friends and family. Monitoring the overall public's perception of autism I would have to say it is mostly uninformed and sterotype laden or not good. And it and not improving. In fact in recent years it has gotten erroneously associated with nutjobs shooting places up. Such perceptions once established are hard to change.

Much of what you say is valid, however, I always tell my closer friends that I am on the spectrum because it helps them understand me better. Sometimes I do things that are off-putting that give the wrong impression. if they know I have autistic tendencies my friends can more easily overlook these behaviors. For example: once I was helping a friend fill out some financial forms and I made some quick gestures combined with a short, curt statement. My friend said to me "if I didn't know you so well I would think you were angry."
 

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