Not sure if I have Aspergers. Would it help to know?

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fruitloop42
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14 Nov 2017, 1:04 pm

I'm wondering whether I have Aspergers and I really don't know. I have a few problems in my life which *might* be explained by Aspergers and I feel like knowing might help me know what to do about them? But an official diagnosis is so expensive. I can't afford it. And the online tests just don't seem that valid, I feel like I'm not sure if I'm answering the questions properly and the questions never seem to match somehow.

The problems I have are:

- Serious problems with executive functioning. I can't seem to be organized. I can say I will try, but it feels like it's not a choice I can make. I'm always losing things, forgetting to do things, not caring about things I'm not focused on - I don't know how to make myself not do this. And it does cause problems, other people find it funny but it's not always that funny to live it. I've read that Aspergers can be linked to executive functioning issues so it seems this could be an explanation.

- I have trichotillomania, an addiction to looking through my hair and pulling it out. I can waste huge amounts of the day doing this and it's really hard to stop. I have to keep it tied back so I can't do it but I still find myself taking it down and starting all over again. I have wondered for a long time whether this is some kind of stereotypy. If I'm not doing this with my hair then I'm often clicking my teeth in time to imaginary music. Or picking my nails. Or something.

- Sometimes I don't recognise people, or I just don't notice they're there and I ignore them completely. It's because I get focused on just one thing, and everything else just kind of goes past like scenery passing through a train window. So people can think I'm being rude, or that I don't like them, or just that I'm super weird. When I'm concentrating, or 'with it', my social skills are fine though - at least I think so. Although I've had friends describe me as 'awkward'.

- One of my biggest problems in relationships is that the person I'm dating feels they don't know whether I like them (I also can't flirt, so nobody knows I like them unless I say so). I don't do PDA. I don't understand it, I don't see the point and I would feel incredibly uncomfortable trying to force it. I don't instinctively 'know' when someone is expecting physical affection and sometimes apparently I can be 'cold'. Which is sad because I like people to feel appreciated, so now I try to tell people how I feel a lot. Which can maybe come across as odd sometimes.

- I have anxiety attacks, I always called them anxiety attacks but they could be meltdowns. I have quite a lot of social anxiety.

- And things which seem to fit but aren't really problems - I don't like hugs from friends - the kind of casual "hi" hugs. They feel really awkward, as does kissing people on the cheek to say hi. I do like hugs when I'm in a relationship though, but then they are proper hugs. When I was a child my classmates used to chase me round trying to hug me and I really hated it. I don't think I have a lot of sensory issues, but I do walk on my toes when I don't have shoes on because I don't like the way it feels to walk with my full foot on the floor.

So I wanted to ask - does having a diagnosis and a reason help with overcoming problems? Is there any value to getting one? I feel like I would just like to know, do I have Aspergers or not? I know nobody on the forum can tell me, I just wonder how people reach the point of kind of accepting it fits and how that acceptance helps.



kraftiekortie
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14 Nov 2017, 1:19 pm

In my opinion, unless you want some sort of "confirmation," or you need the diagnosis for some sort of "accommodation," I don't believe it is worth it to seek an Autism Spectrum Disorder diagnosis in the United States. In Europe, it would be easier---but it would require a long wait. In other places: it would probably be more difficult than for an adult in the United States.

What you have written doesn't "scream" autism. It's more like you're an introverted person who doesn't like to be touched. There's nothing wrong with that. You're still, most definitely, welcomed here even if it turns out you're not "autistic."

Then, I got to thinking: there is a notion that a "female" presentation of autism is somewhat different than the "male" presentation. That a female, through "social conditioning," is able to "mask" her autistic symptoms. However, I have seen a considerable amount of "frank" autism in females as well as the more "subtle" form of autism.

What's important, really, is: what was your childhood like? Did you have any delays in development? Did you have trouble making friends in school? Were you thought of as being a "little professor," or just "odd?" For one to have autism/Asperger's, one has to have the "symptoms" since at least early childhood, if not toddlerhood. With relative frequency, people with autism develop symptoms around the age of 18 months to 2 1/2 years.

If you really feel like you want a diagnosis, go for it. But it will, usually, cost quite a bit of money in the United States. If you happen to be in Europe, it's usually free---but you have to wait a long time, and have a GP willing to refer you to a psychologist/psychiatrist for this diagnosis.



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14 Nov 2017, 1:31 pm

You need an official diagnosis to go on disability. In the USA, the Social Security Administration will have its own doctor confirm your doctor's diagnosis. You really need two diagnoses.

Other than that, there isn't anything that really requires a diagnosis. If you need meds for anxiety, you can get anxiety meds without being diagnosed for Aspergers.

I wouldn't expect a diagnosis to change the opinions of people around you. Autism is too complicated for most people to understand unless you are just like Rain man or some other fictional character that everyone knows about. And denial is very strong in some people

If you do have autism you can often find useful hints on how to deal with various issues on this forum.

Saying you have Aspergers is preferable to launching into a 30 minute Sheldon Cooper like monologue on how you did that, but you don't need an official diagnosis if you routinely act like Sheldon Cooper. Lots of people will just take you at your word.



rowan_nichol
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14 Nov 2017, 1:49 pm

Thank you for your post and welcome to Wrong planet.

You have made an interesting post here, quite a lot to think about and from some less common angles.

A personal view first. I found getting an assessment and all the research I did beforehand was useful. It does not make the difficulties go away. Autism is lifelong, there is evidence it is in the connections within the brain. I appreciate having been assessed because it has been like finding the missing pages from the isntruction book or the specification. An example is I now get less up tight in unstructured social situations. I no longer believe it is hard because i am not making enough effort or could not be bothered to learn how to do social stuff properly, it is going to be hard because this function is not implemented in hardware so I can stop worrying and with the worry out of the way things do become a bit easier.

Taking the more general view now, it is important to stress that there are very few people on Wrong Planet qualified to assess, and also assessment cannot sensibly be done in discussions on an internet forum. However, the forum is a powerful tool to compare experiences.

A number of Autistic people report that they do not recognise faces, "Face Blindness" Sarah Hendrickx recounts amusing stories about her and her partner (both on the spectrum) in a number of her ;lectures which are available on YouTube and elsewhere.

Many autistic people also report sensitivity to touch etc which seems different from the population at large. For example, to many light touch is actually quite unpleasant. A contrast is deep pressure. I love deep pressure with a passion, to the extent that I made myself some kit to give me that deep pressure.

While it does not occur explicitly in the core diagnostic criteria, some of us are a bit rubbish at executive function stuff. It is an area an assessor may explore with someone in the face to face interview(s) which are part of diagnostic procedures.

Pulling ones own hair, caressing it, enjoying could be one of many things which we refer to as Stims. theses are actions where we give ourselves sensory input, feedback etc and which we find can be calming, soothing, or dissipate nervous energy, anxiety etc. Stims are part of the core traits in the diagnostic references, being refered to as "Stereotyped and repetitive behaviours "

"Awkward" I feel that way on occasions too. If I am tired my social skills take bit of a nosedive.

I have had one former partner tell me "I don't feel as if I am attached to anything" when feeding back difficulties we had found.

Reading or giving non spoken information (of which Flirting is an example) is something which does not come naturally to most of us on the spectrum, Difficulties with non verbal stuff are mentionned in the diagnostic references. This has left women is sometimes incredibly vulnerable positions. Men as well on occasions. I ended up in a quite ill advised relationship from missing unspoken hints that the lady concerned had intentions towards me, at the same time what I did simply out of concern for someone in the same church in a difficult situation were incorrectly interpritted as me having intentions towards her. it was all a bit of a mess so it was.

Anxiety is very common. Sarah Hendrickx gave a lecture on this subject to a conference organised by the the National Autistic Society which is available on YouTube. Anxiety in social situations is a common occurence for those of us who are Autistic. For the world at large, a social situation is something they regard as a good thing, why would anyone get anxious in such a situation. But on the spectrum, such situations are not comfortable ones, so anxiety and social anxiety are signs which are worth following up.

Online tests are an interesting area. Some of those tests have evidence behind them and form parts of diagnostic procedures which are approved by a number of countries' health systems. The Autsim Quotient and the Empathy Quotient questionaires are part of the Cambridge Autism Research Centre's Adult Asperger Assessment tool which was the tool my assessor used in my autism assessment last year. You are right to exerciser caution around these tools outside a formal assessment process. They are used as Screening Tools in the assessment. They cannot by themselves diagnose any part of the Autism Spectrum, They can screen out people unlikely to be autistic. Scores around the threshold remind the assessor to take special care in the face to face interview to ensure nothing is overlooked.

Imediately after my assessment I started a project I should not have taken on as I did not have enough time to service it properly and my heart was not in it. It was a time of very high stress. Every stress point was consistent with being on the spectrum. In that respect the assessment was useful.

I was fortunate all those years ago that my passionate aspie interests landed me work in a large and generally decent organisation. That meant I did not need the assessment in order to have any accommodations made. however if we have a big change in the job requirements which hit those autistic tress points I can use the report to hold some meetings with my manager, HR and union rep to work out some reasonable adjustments and extra training as required, and do so in confidence and with the protection of the law and the organisations own policies.



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14 Nov 2017, 2:57 pm

Understanding that you have Aspergers is central to your life. I only understood Aspergers when it started to be discussed after most of my life was finished. If I had known and had some advice when I was young, my life would have been different. It did help me understand many things about my life.
I never understood why I had so few school friends and why the normal interaction between people was a mystery. I seldom "dated" and usually not successfully. I never understood why I didn't recognize people I had met the day before. I now understand that I physically look away from faces. I understand that I am bad at non-verbal communication and don't recognize that I sometimes talk too much. For work, I now understand that jobs with interaction between people are to be avoided and this is simply because I was born without the skills needed to succeed in social situations. My best job was a government job where I was responsible to see that laws were properly applied to imports. I saw only paperwork. When asked, I explained the law to be followed. I was highly rated and well-paid. When I left the government to do the same work but representing importers, I suddenly had to relate to people who hired me and convince them of my talent. This was a major challenge and I was not successful. Lesson: avoid work where personal interaction is central to the job. There are jobs (like I had) where college degrees can get you major work and you are not limited to mail carrier or bus driver. If you just graduated with a medical degree, go into research rather than open a practice, for example.
In gym class, when baseball teams were being selected, I and a skinny kid with glasses (a "loner") were always last. I always got left field but even there sometimes I had to catch a ball and usually didn't. I always hold the hand rail when going down stairs and marvel at the guys who read a newspaper when going down stairs.
Aspergers does not prevent you from having a normal married life. Your partner will understand your "personality" after a while and you can enjoy evenings with the friends they have.
Get a diagnosis, get books and read about Aspergers. Understand you have a "condition". You can avoid negatives and embrace the positives and that will make life much better.



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14 Nov 2017, 3:36 pm

You have a number of traits associated with Aspergers(as well as other conditions).

Some universities conduct studies in which they give low cost or free ASD assessments.


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fruitloop42
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14 Nov 2017, 6:31 pm

Thanks so much for all of the replies, I really appreciate them!

kraftiekortie wrote:
In my opinion, unless you want some sort of "confirmation," or you need the diagnosis for some sort of "accommodation," I don't believe it is worth it to seek an Autism Spectrum Disorder diagnosis in the United States. In Europe, it would be easier---but it would require a long wait. In other places: it would probably be more difficult than for an adult in the United States.

What you have written doesn't "scream" autism. It's more like you're an introverted person who doesn't like to be touched. There's nothing wrong with that. You're still, most definitely, welcomed here even if it turns out you're not "autistic."

Then, I got to thinking: there is a notion that a "female" presentation of autism is somewhat different than the "male" presentation. That a female, through "social conditioning," is able to "mask" her autistic symptoms. However, I have seen a considerable amount of "frank" autism in females as well as the more "subtle" form of autism.

What's important, really, is: what was your childhood like? Did you have any delays in development? Did you have trouble making friends in school? Were you thought of as being a "little professor," or just "odd?" For one to have autism/Asperger's, one has to have the "symptoms" since at least early childhood, if not toddlerhood. With relative frequency, people with autism develop symptoms around the age of 18 months to 2 1/2 years.

If you really feel like you want a diagnosis, go for it. But it will, usually, cost quite a bit of money in the United States. If you happen to be in Europe, it's usually free---but you have to wait a long time, and have a GP willing to refer you to a psychologist/psychiatrist for this diagnosis.


Thanks for your reply, I really appreciate your thoughts and they have made me think. I have read that autism/aspergers can present differently in females due to the fact that women often have higher social skills in general than men, which can lead to later diagnoses for women. It's interesting. I am in the US at the moment, so yes, diagnosis would be prohibitively expensive.

My childhood was fine. I don't think I had delays in development. I was considered odd though. My school kept sending me for hearing tests because the teachers thought I couldn't hear properly. I came back with really good hearing scores every time, so my parents decided I just wasn't trying to listen to the teachers. Teachers generally found me annoying because I did well in exams even though I didn't really listen to them, participate in classes or remember to give homework in. I just knew how to pass exams. My parents had to go into school at one point to discuss my "attitude problem". But luckily my parents were just happy I was doing well grade-wise.

I'm trying to think of stuff from my childhood now - I did have friends. A small number of close friends though, and people did consider me weird. When I was younger I didn't talk much, so people including the teacher teased me for that. Then I tried being the class clown but that didn't work very well. So I was mainly friends with more outcast kind of people. I did have obsessions too, I was really obsessed with wolves, which people found weird. I feel like I was kind of tolerated as a weirdo but I didn't really mind that. I do remember people being irritated when I got better grades than them because people often thought I was a bit stupid.

And thank you for saying I would still be welcomed here :). I have been reading some of the forum posts and I do identify with certain things and have found a lot of useful information.



fruitloop42
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14 Nov 2017, 6:39 pm

rowan_nichol wrote:
Thank you for your post and welcome to Wrong planet.

You have made an interesting post here, quite a lot to think about and from some less common angles.

A personal view first. I found getting an assessment and all the research I did beforehand was useful. It does not make the difficulties go away. Autism is lifelong, there is evidence it is in the connections within the brain. I appreciate having been assessed because it has been like finding the missing pages from the isntruction book or the specification. An example is I now get less up tight in unstructured social situations. I no longer believe it is hard because i am not making enough effort or could not be bothered to learn how to do social stuff properly, it is going to be hard because this function is not implemented in hardware so I can stop worrying and with the worry out of the way things do become a bit easier.

Taking the more general view now, it is important to stress that there are very few people on Wrong Planet qualified to assess, and also assessment cannot sensibly be done in discussions on an internet forum. However, the forum is a powerful tool to compare experiences.

A number of Autistic people report that they do not recognise faces, "Face Blindness" Sarah Hendrickx recounts amusing stories about her and her partner (both on the spectrum) in a number of her ;lectures which are available on YouTube and elsewhere.

Many autistic people also report sensitivity to touch etc which seems different from the population at large. For example, to many light touch is actually quite unpleasant. A contrast is deep pressure. I love deep pressure with a passion, to the extent that I made myself some kit to give me that deep pressure.

While it does not occur explicitly in the core diagnostic criteria, some of us are a bit rubbish at executive function stuff. It is an area an assessor may explore with someone in the face to face interview(s) which are part of diagnostic procedures.

Pulling ones own hair, caressing it, enjoying could be one of many things which we refer to as Stims. theses are actions where we give ourselves sensory input, feedback etc and which we find can be calming, soothing, or dissipate nervous energy, anxiety etc. Stims are part of the core traits in the diagnostic references, being refered to as "Stereotyped and repetitive behaviours "

"Awkward" I feel that way on occasions too. If I am tired my social skills take bit of a nosedive.

I have had one former partner tell me "I don't feel as if I am attached to anything" when feeding back difficulties we had found.

Reading or giving non spoken information (of which Flirting is an example) is something which does not come naturally to most of us on the spectrum, Difficulties with non verbal stuff are mentionned in the diagnostic references. This has left women is sometimes incredibly vulnerable positions. Men as well on occasions. I ended up in a quite ill advised relationship from missing unspoken hints that the lady concerned had intentions towards me, at the same time what I did simply out of concern for someone in the same church in a difficult situation were incorrectly interpritted as me having intentions towards her. it was all a bit of a mess so it was.

Anxiety is very common. Sarah Hendrickx gave a lecture on this subject to a conference organised by the the National Autistic Society which is available on YouTube. Anxiety in social situations is a common occurence for those of us who are Autistic. For the world at large, a social situation is something they regard as a good thing, why would anyone get anxious in such a situation. But on the spectrum, such situations are not comfortable ones, so anxiety and social anxiety are signs which are worth following up.

Online tests are an interesting area. Some of those tests have evidence behind them and form parts of diagnostic procedures which are approved by a number of countries' health systems. The Autsim Quotient and the Empathy Quotient questionaires are part of the Cambridge Autism Research Centre's Adult Asperger Assessment tool which was the tool my assessor used in my autism assessment last year. You are right to exerciser caution around these tools outside a formal assessment process. They are used as Screening Tools in the assessment. They cannot by themselves diagnose any part of the Autism Spectrum, They can screen out people unlikely to be autistic. Scores around the threshold remind the assessor to take special care in the face to face interview to ensure nothing is overlooked.

Imediately after my assessment I started a project I should not have taken on as I did not have enough time to service it properly and my heart was not in it. It was a time of very high stress. Every stress point was consistent with being on the spectrum. In that respect the assessment was useful.

I was fortunate all those years ago that my passionate aspie interests landed me work in a large and generally decent organisation. That meant I did not need the assessment in order to have any accommodations made. however if we have a big change in the job requirements which hit those autistic tress points I can use the report to hold some meetings with my manager, HR and union rep to work out some reasonable adjustments and extra training as required, and do so in confidence and with the protection of the law and the organisations own policies.


Thank you for your feedback!

"An example is I now get less up tight in unstructured social situations. I no longer believe it is hard because i am not making enough effort or could not be bothered to learn how to do social stuff properly, it is going to be hard because this function is not implemented in hardware so I can stop worrying and with the worry out of the way things do become a bit easier."

I feel like this explains why I might like to know whether I'm correct in Aspergers suspicions or not. Not so much so that I can explain to other people (although understanding myself might help me to explain my behavior in relationships to people), more so I can just explain to myself. I also find psychology and the brain very interesting.

I'm going to look up Sarah Hendrickx on Youtube, thank you. And thanks also for your other points, I'm going to read and continue to think about them.



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14 Nov 2017, 6:47 pm

fruitloop42 wrote:
My school kept sending me for hearing tests because the teachers thought I couldn't hear properly. I came back with really good hearing scores every time, so my parents decided I just wasn't trying to listen to the teachers.


Way back in the day many Autistic people were misdiagnosed with deafness because they did not react as expected to people talking to them.


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kraftiekortie
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14 Nov 2017, 7:46 pm

Froot Loops was my favorite cereal growing up.....



fruitloop42
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14 Nov 2017, 7:47 pm

ASPartOfMe wrote:
fruitloop42 wrote:
My school kept sending me for hearing tests because the teachers thought I couldn't hear properly. I came back with really good hearing scores every time, so my parents decided I just wasn't trying to listen to the teachers.


Way back in the day many Autistic people were misdiagnosed with deafness because they did not react as expected to people talking to them.


Ah wow that's interesting. I didn't know that.



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14 Nov 2017, 7:49 pm

fruitloop42 wrote:
I have been reading some of the forum posts and I do identify with certain things and have found a lot of useful information.


Welcome, Fruitloop.

My advice to you would be to carry on doing the above for the time being. Although I do now have a formal diagnosis, which has sometimes been useful for practical reasons, when it comes to understanding myself and getting some perspective on my traits and behaviours, there's nothing better than communicating with other folk who are on the autistic spectrum.

When I first showed up for my assessment, one of the things that the psychologist made clear at the start was that she was qualified to tell me if I fitted the diagnostic criteria, but that her ability to offer any great insights into the workings of my mind would be extremely limited - simply because she was not autistic herself (sadly, I fear that few of the 'white coats' out there are quite so humble!)

I think that the way you broke down the issues that concern you in your original post show that, like a lot of us who are diagnosed relatively late in life, you have a pretty clear and detailed view of your own traits, and where exactly they cause friction with the world around you. I have no complaints whatsoever about the result of my assessment or the way it was conducted, but I still came away kind of thinking; "so all I get is this 'certificate' then?". There was a sense of relief at having a definitive answer, for sure, but there were no major 'aha' moments that changed anything about how I view myself or how I view the world and the people around me.

Whether you are on the autistic spectrum or not, the actual traits you describe are all things which at least some of us here have in common with you. If the subjects here seem familiar, and talking with folks who understand and can maybe offer some advice helps you, then it just does, whatever your 'condition' (if any), and regardless of whether you have an official diagnosis. I've also found that taking it 'trait-by-trait' makes it much easier to stay focused on the day to day issues that I'm trying to deal with, rather than getting lost trying to unravel every last little detail of what being autistic all means.

Once you've joined in with the sharing of experiences and advice for a little while, you most likely will know whether or not you identify as autistic with much more confidence, and can then decide if a more formal diagnosis would benefit you at all, either for practical reasons or just for your own peace of mind.


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14 Nov 2017, 7:53 pm

It's true what ASPartofme said.

Kids who had trouble speaking or "listening" often were referred for hearing tests.

Have you ever read about the Broad Autism Phenotype?



fruitloop42
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14 Nov 2017, 7:58 pm

kraftiekortie wrote:
Froot Loops was my favorite cereal growing up.....


Oh cool! It was actually a nickname someone had for me but I do love the cereal too :).



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14 Nov 2017, 8:00 pm

Welcome frootloop42!

So, are you here to discuss the answer to life, the universe, and everything? :)

When I first read about a woman with Asperger's syndrome, I thought that could never be me, because when she got home from work, she crawled into a large cardboard box to decompress. Okay, I've always been eccentric, but not that extreme ...

During middle age I discovered I was an Aspie. It wasn't so much me diagnosing myself or getting a doctor's diagnosis ... it was people at work taking me into a room, going down a whole list of traits I had that other people didn't like (including being as smart as Einstein). I Googled these traits and Bingo ... a whole bunch of autism websites came up. It was at once shocking and comforting. Definitely explained a ton about my life.

I had always wondered why I was so different. (Think Sheldon, Spock, Q from Star Trek.)

As for "would it help to know?"

I'm glad I didn't know when I was a child.
I'm glad I know now.
I've learned to mostly keep the information to myself ...
most people respond negatively if you tell them,
and I sure wouldn't want to lose a job over it.