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John L
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08 Aug 2016, 5:43 am

A bit of context: I believe I've been misdiagnosed with aspergers. I just don't see the symptoms, I never have, this became especially clear after doing some research on the subject.

Here's the problem though: Alexithymia is known to present in people with aspergers, so how do I know I'm not feeling anxious? How do I know I'm not feeling depressed? How do I know I don't have the symptoms if I can/can't recognize my feelings?

It always seemed very obvious when I was feeling something, but maybe I'm completely delusional and honestly have no idea what I'm feeling? For the past 8 months I paid particular attention to the things I was feeling, both emotionally and physically, while also noting my behavior. Nothing seems to be off, so I'm pretty sure I know what I'm feeling, but like...? Idk. I have no idea anymore.

How do I know if what I'm feeling is really what I'm feeling?



goatfish57
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08 Aug 2016, 6:08 am

You are asking a very difficult question. Emotions are a problem for me, as well. I have a limited emotional vocabulary and have trouble understanding,recognizing and responding to them.

What I do is pick specific emotions that I want to understand and seek them out. Some people like to read novels, watch movies, listen to music, .... Working on facial expressions to project emotions is another good exercise which can be helpful.

The range of emotions is very large and needs special attention to understand. There are times when I take my blinders off and try to experience emotions. This can be overwhelming and I do it with limits and caution.

I spent a life time building up walls to keep emotions out. Letting them resurface is frightening.

Good luck and let us know how you succeed.


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creepycrawler
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08 Aug 2016, 8:51 am

Questioning your perceptions can be a very dangerous thing, and also supremely unhelpful. If you start seeing yourself as an unreliable narrator, it can lead you to invalidate your experiences - even if they're perfectly genuine.

From my observations, no one experiences emotions exactly the same way. But different does not mean deficient.

My advice is to meditate on emotion and practice mindfulness as you engage in the day to day. Look for patterns in your reactions. Start with happiness, because that's really the goal of all this self discovery. Do things you enjoy, especially with people you care about. Be attentive to your mental state while, of course, fully being aware of the joyful thing you're experiencing.

That's really all mindfulness is: being fully aware of the present, and including yourself things you're paying attention to.

Sadness again is best sought out with people you care about. Reminisce with friends, share with them your trouble and listen to theirs. You can even find happiness in this, because you are connecting deeply with someone you care about.

It can be hard finding someone to explore this with. I'm lucky enough to have someone I can confide in fully, yet i still hold myself back when interacting because I'm such a control freak. Video games have allowed me to explore emotion in this way to an extent, I imagine TV shows and movies can too. But there is no complete substitute for real human contact.

Another thing is emotions are really hard to describe for anyone! Don't get hung up on finding the perfect word choice or on analyzing if what your feeling really counts as 'happiness'.

For me happiness is a light feeling. I feel a pleasant wave radiate through my body from my head. I feel the urge to smile, and when I do it feels good. Sometimes I feel like running around, or jumping up and down.

Other people would describe it differently, and they might experience something completely different. But many people would recognize what i describe as happiness, even if it's not exactly what they feel.

So, in short, experience things, preferably with people you care about, pay attention, and describe your internal experience in your own words. That's my advice.


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08 Aug 2016, 8:57 am

When were you diagnosed?

One thing that I think most of us who were diagnosed as children go through is an ongoing back and forth with whether we like or even need the label. This is true even in cases where people are very affected by autism.

I know one young woman who acts as autistic as they come, she's dressed very differently, has little eye contact, struggles in school because the other students bother her, speaks in unique patterns and only becomes animated over one subject. She has an extremely hard time describing anything that is going on with her, and uses the word "angry" to describe every not-nice emotion. I asked her once about getting rid of her autism, and she replied that she's not sure that she has it! And that's totally normal and fine that she's thinking about these things. I think its just part of the maturation process for people with cognitive disabilities. Since no-one can ever know how other people think, its natural to wonder if we are all that odd, or if its all a big mistake.

The thing about autism is that a lot of us don't really see ourselves clearly. So, if you are autistic, and you aren't getting the reactions from people that you desire, its really important to know this about yourself - you may be putting out social "vibes" that don't correspond with how you really feel. My friend that I used in the above example, is going to ask why she's not included in social circles at some point. And that's the right time to understand that she sees the world differently. Its a time when her label is useful.

A relevant fact here is how much we don't understand the human brain, and human cognition. These diagnoses are really pretty "soft," meaning that they don't have a lot of hard evidence that Autism is actually a thing - much less decide for sure who has it or who doesn't. Its not like we can take a blood sample and see that you have autism in your plasma, or take a brain scan and see the autism center light up.

Because of this, the label autism is just a label, and it should only be used as much as its helpful. If its not helpful to you right now, I would explore abandoning it. See what its like to think of yourself as a NT. You might find that you do need the label and you might find that actually, you are fine without it.



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08 Aug 2016, 12:04 pm

Everybody has a right to a second opinion. If it is doable, get to an autism specilist and express your reservations about your diagnosis.


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John L
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08 Aug 2016, 10:58 pm

ASPartOfMe wrote:
If it is doable, get to an autism specilist and express your reservations about your diagnosis.

I am meeting with an autism specialist in a few days, but I've had a rough history with specialists. I lack trust in their ability to be objective and see things in a broader light, as opposed to looking at it through a narrow lens.

e.g. He says something and I end up misunderstanding. This might be considered normal, but if you're seeing someone as Autistic you might say, "He misunderstood that, suggesting he has Autism." I admit that I'm being a little cynical here.

somanyspoons wrote:
When were you diagnosed?

It was about 10 years ago, and I was also ~10-years-old at the time. Near that time, Autism/Asperger's was trending and becoming a more commonly known disorder.

somanyspoons wrote:
One thing that I think most of us who were diagnosed as children go through is an ongoing back and forth with whether we like or even need the label. This is true even in cases where people are very affected by autism.

I had no issue with the label, I even wanted it at first, but not because I thought it described me. Truthfully, I had absolutely no idea what Asperger's was, at first my parents only told me I had a mental disability. They tried to make it sound like it was an advantage, maybe they didn't think I could read their expressions, or maybe they were just careless, but it was obvious that it wasn't.

I never had issues making friends and I was even moderately popular. I could move from group to group easily and have many fond memories with those friends. I even asked them if they thought there was anything wrong with me, or they thought I was 'weird' - all but one person said no (that one guy was a bit of a prick though). I had no special interest, I was great at sports, average grades, I actually loved change and disliked continuity (as soon as something became repetitive I lost interest) and yeah.

Then we moved and changed schools. It was easy to make friends because I had something unique to offer (being from the country, and they the city), but it was around this time my parents dropped a bomb shell on me.

Being told that you're mentally handicapped can be...upsetting. I was told that I couldn't read facial expressions, I couldn't understand tone, I couldn't understand what people were thinking, I couldn't see when I'd said something inappropriate, and worse of all, I lacked the ability to know when I did any of this...and I would be like this for the rest of my life. I didn't believe it at first, but as time passed I tried observing and being careful, but as most of us know, the more you try not to do something, the more you end up doing it. Each mistake accumulated until gradually I doubted my reality.

I slowly stopped talking to people, I stayed in at lunch time and waited for class to resume. I asked if people thought there was anything 'weird' about me; they said no. I didn't know whether to believe them, after all, I can't recognize when people are lying to me, or so I'm told. I began to shut off and isolated myself from people. What am I doing wrong? How can I fix myself? What is the appropriate way to interact with people?

It obliterated the world I knew. I wanted to be fixed, and I'd been told that a diagnosis might lead to help. So to ensure that happened I mimiced the symptoms my parents had told me about. I deliberately took things literally and even started a habit or two leading up to the diagnosis. I made sure I got a few answers wrong on the tests as well.

ASD basically became my 'identity', that was what I'd been told I was. I even believed it for a while because I couldn't figure out what I was doing wrong, so in my mind that confirmed that I had it because I couldn't see where I was going wrong. It didn't occur to me that there might have been nothing 'broken' about me.

After about 6 months I came to the realization that there was nothing wrong with me. I was like other people, but that lingering doubt never went away. It's the shadow that follows me.

somanyspoons wrote:
The thing about autism is that a lot of us don't really see ourselves clearly. So, if you are autistic, and you aren't getting the reactions from people that you desire, its really important to know this about yourself - you may be putting out social "vibes" that don't correspond with how you really feel. My friend that I used in the above example, is going to ask why she's not included in social circles at some point. And that's the right time to understand that she sees the world differently. Its a time when her label is useful.

A relevant fact here is how much we don't understand the human brain, and human cognition. These diagnoses are really pretty "soft," meaning that they don't have a lot of hard evidence that Autism is actually a thing - much less decide for sure who has it or who doesn't. Its not like we can take a blood sample and see that you have autism in your plasma, or take a brain scan and see the autism center light up.

Because of this, the label autism is just a label, and it should only be used as much as its helpful. If its not helpful to you right now, I would explore abandoning it. See what its like to think of yourself as a NT. You might find that you do need the label and you might find that actually, you are fine without it.

I got the reactions I desired almost all the time, there are a few times I didn't, but I think most people have at least a few of those. But I always worked out why I might not have in a couple of seconds, it seems fairly intuitive. Maybe I'm being delusional again.

Even if I'm just walking by people, I automatically imagine things from their perspective. What I look like, how they might think of me, etc. While I'm talking to people I'm, at least on some level, thinking about it from their perspective. I seek out the opinions of others when I doubt myself, which is why I'm posting here. I frequently talk to people and ask for their viewpoint on me/other things.

I doubt myself a lot, it doesn't impact my self esteem or anything, I just think it's useful to question things.

Why can't I just move past and get over my diagnosis?
I don't know. I think it's because I don't want to, even if the possibility that I have autism is slim, I don't want to discredit it in case it will make me ignorant. What if I do have it, and by being ignorant of it I end up making mistakes? I know that's not true, but I can't seem to get rid of that thought.



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09 Aug 2016, 12:05 am

Hum. I really think its good that you are exploring this question more.

Age wise, this is all perfectly normal for all young adults to go through what you are going through right now. At 20, I had decided that my learning problems all stemmed from bad teaching techniques. I was working on my degree in special education and I was learning all about right teaching, so it became a thing. 20 is an age where we are exploring what kind of adult we want to be. We are testing our limits and we are questioning our identities as they were formed around our parents. We have the ability to understand that our parents/teachers/childhood authority figures are people and are fallible, and we spend a lot of time exploring that.

A couple of things to ask would be to see your original paperwork. Its going to hurt to see that kind of stuff written about you, but it would be good to start to understand where they were coming from. You might also ask your parents what their perspective was on why they sent you in for testing in the first place. The hard thing about doing that is that you then have to listen to what they say - let them talk, don't get defensive.

Testing is expensive (around $4000,) and scary for parents to put their kids through. They would not have done so if there wasn't a really good reason. Unless you think that your parents have Munchausen by proxy syndrome (a VERY rare disorder where the parent gets off on making the kid appear ill) your parents certainly had really good reason to be concerned.

You might also spend some time exploring some tropes about austism. For example, the fact that you had some friends in school doesn't mean that you can't be autistic. Autistics being completely friendless is just a steriotype. Boys especially, if they excel in sports or something "cool" like robots can actually fare pretty well in social circles. The challenges for these boys come when things don't go their way, or when an authority figure tries to redirect them.

In your writing, there is evidence of one big typical autistic trait. You ask other people if they think you are weird and accept it to be true when they say no. This is not a question usually asked by NT, and frequently asked by autisic people. Also, NTs lie about this kind of stuff all the time. It would be socially weird for them to say to your face that they think you are weird. So you can't trust people to give a honest answer to this question. That doesn't mean that you have to be autistic. A lot of NTs have a few traits of autism. But it does mean that there is some evidence even in our short interaction that label wasn't completely unwarranted.



John L
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09 Aug 2016, 5:45 am

Sorry about the novel.

somanyspoons wrote:
At 20, I had decided that my learning problems all stemmed from bad teaching techniques. I was working on my degree in special education and I was learning all about right teaching, so it became a thing. 20 is an age where we are exploring what kind of adult we want to be. We are testing our limits and we are questioning our identities as they were formed around our parents. We have the ability to understand that our parents/teachers/childhood authority figures are people and are fallible, and we spend a lot of time exploring that.

What a coincidence - I have a sticky note on the wall opposite me that says, "Do you have a limit? Why should you find your limit?" It's a reminder to see what I'm capable of.

somanyspoons wrote:
Testing is expensive (around $4000,) and scary for parents to put their kids through. They would not have done so if there wasn't a really good reason. Unless you think that your parents have Munchausen by proxy syndrome (a VERY rare disorder where the parent gets off on making the kid appear ill) your parents certainly had really good reason to be concerned.

I may not have been very clear with the way I worded things. I was doing quite well until they told me that I had a mental disability and described what they thought was 'wrong' with me. My 'degradation' occurred over the following 1-2 months.

It's a bit complicated, so for clarify these are the main events in the order they occurred:
- Parents tell me they think I may have a mental disability.
- Moved houses and schools.
- Parents voice their concern again, but this time they describe the symptoms.
- I gradually break down over the following 1-2 months.
- Diagnosed.

The first time they told me about it they didn't describe the symptoms, so I just thought "Well, I seem fine and I'm enjoying life, so it doesn't matter." then forgot about it soon after. I did ask a few friends if they thought anything was wrong with me, they said no, so I didn't press any further.

We move houses and schools a few months later. Change never bothered me - I was actually excited to move because I got to live in the city and meet new people. So I went to the new school, interacted with people, did my work, no problems at all. Then one day, seemingly out of nowhere, my parents speak to me about me having a mental disorder, but this time they describe the symptoms and told me what was wrong with me (spoiler: they listed almost every symptom). It would take a while to explain what happened to me, if you're interested in hearing what it did.

somanyspoons wrote:
A couple of things to ask would be to see your original paperwork. Its going to hurt to see that kind of stuff written about you, but it would be good to start to understand where they were coming from. You might also ask your parents what their perspective was on why they sent you in for testing in the first place. The hard thing about doing that is that you then have to listen to what they say - let them talk, don't get defensive.

I read over my original paperwork quite a few times and asked my parents about it. If anything, I've done nothing but hear their perspective over the past decade. I have a bunch of notes with all the 'examples' my mum listed.

When I was 10 I tried talking with them and explaining my side of things, but they were more interested in talking to me. I was afraid of pressing further because my mum would became very angry when she perceived you as 'challenging' her. My dad seemed to just follow along and agree with whatever my mum said.

My replies and examples that demonstrated my understanding were rendered useless, because they just said I couldn't understand the difference, so how do I know I interpret the situation correctly? It's like saying someone is manipulative, so when they try to convince you they're not, they're just trying to manipulate you. It's unwinnable.

It's frustrating.

somanyspoons wrote:
The challenges for these boys come when things don't go their way, or when an authority figure tries to redirect them.

I understand that not all people with Autism are bullied.

somanyspoons wrote:
In your writing, there is evidence of one big typical autistic trait. You ask other people if they think you are weird and accept it to be true when they say no.

Allow me to clarify. When I say I asked them if I was weird, I didn't literally ask them "Do you think I'm weird?"

I knew that some people might lie or have some fun with me if I came off in a certain way. That's why it was important to craft different ways of asking the same question and framing it in a way ensured the greatest chance of an honest answer. If they were the sarcastic and joking type, it was important to cut through that and frame them in a way that restricted their responses, increasing the chance of a response 'worth' more.

I picked people who knew me best and were more likely to give a serious response, or at least people I could frame in a way that might give a somewhat reliable answer. I didn't believe any of the responses -I have trust issues- but I did assign each response a 'value' based on how true I thought it might be. I crafted different ways of wording it for each person and waited until it felt 'right' to ask. I only asked them in private and no-one else was within earshot. I didn't bother with people who didn't know me well or were unlikely to give a reliable answer.

Beside the way I worded my questions, I just did what felt natural. That involved constructing a 'dummy' of the person in my mind, then tested the different ways it interacted with stimuli until I achieved the desired outcome. More or less. It was all done by what I felt would work and what wouldn't. That produced consistent results. On the rare occasion something didn't work, I worked out why it didn't.



Last edited by John L on 09 Aug 2016, 5:59 am, edited 1 time in total.

goatfish57
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09 Aug 2016, 5:54 am

I am guessing that you are a young adult and have an entire lifetime waiting for you to enjoy. Getting past our childhood demons is part of becoming an adult. You are lucky, the social impairment common with autism is not an obstacle for you.

Ask a counselor for advice on how to proceed with putting your diagnosis behind you.

PS: SoManySpoons, your question example reminded me of when a girlfriend asks about how she looks in her favorite jeans.


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09 Aug 2016, 6:29 pm

John L wrote:
Sorry about the novel.

somanyspoons wrote:
At 20, I had decided that my learning problems all stemmed from bad teaching techniques. I was working on my degree in special education and I was learning all about right teaching, so it became a thing. 20 is an age where we are exploring what kind of adult we want to be. We are testing our limits and we are questioning our identities as they were formed around our parents. We have the ability to understand that our parents/teachers/childhood authority figures are people and are fallible, and we spend a lot of time exploring that.

What a coincidence - I have a sticky note on the wall opposite me that says, "Do you have a limit? Why should you find your limit?" It's a reminder to see what I'm capable of.

somanyspoons wrote:
Testing is expensive (around $4000,) and scary for parents to put their kids through. They would not have done so if there wasn't a really good reason. Unless you think that your parents have Munchausen by proxy syndrome (a VERY rare disorder where the parent gets off on making the kid appear ill) your parents certainly had really good reason to be concerned.

I may not have been very clear with the way I worded things. I was doing quite well until they told me that I had a mental disability and described what they thought was 'wrong' with me. My 'degradation' occurred over the following 1-2 months.

It's a bit complicated, so for clarify these are the main events in the order they occurred:
- Parents tell me they think I may have a mental disability.
- Moved houses and schools.
- Parents voice their concern again, but this time they describe the symptoms.
- I gradually break down over the following 1-2 months.
- Diagnosed.

The first time they told me about it they didn't describe the symptoms, so I just thought "Well, I seem fine and I'm enjoying life, so it doesn't matter." then forgot about it soon after. I did ask a few friends if they thought anything was wrong with me, they said no, so I didn't press any further.

We move houses and schools a few months later. Change never bothered me - I was actually excited to move because I got to live in the city and meet new people. So I went to the new school, interacted with people, did my work, no problems at all. Then one day, seemingly out of nowhere, my parents speak to me about me having a mental disorder, but this time they describe the symptoms and told me what was wrong with me (spoiler: they listed almost every symptom). It would take a while to explain what happened to me, if you're interested in hearing what it did.

somanyspoons wrote:
A couple of things to ask would be to see your original paperwork. Its going to hurt to see that kind of stuff written about you, but it would be good to start to understand where they were coming from. You might also ask your parents what their perspective was on why they sent you in for testing in the first place. The hard thing about doing that is that you then have to listen to what they say - let them talk, don't get defensive.

I read over my original paperwork quite a few times and asked my parents about it. If anything, I've done nothing but hear their perspective over the past decade. I have a bunch of notes with all the 'examples' my mum listed.

When I was 10 I tried talking with them and explaining my side of things, but they were more interested in talking to me. I was afraid of pressing further because my mum would became very angry when she perceived you as 'challenging' her. My dad seemed to just follow along and agree with whatever my mum said.

My replies and examples that demonstrated my understanding were rendered useless, because they just said I couldn't understand the difference, so how do I know I interpret the situation correctly? It's like saying someone is manipulative, so when they try to convince you they're not, they're just trying to manipulate you. It's unwinnable.

It's frustrating.

somanyspoons wrote:
The challenges for these boys come when things don't go their way, or when an authority figure tries to redirect them.

I understand that not all people with Autism are bullied.

somanyspoons wrote:
In your writing, there is evidence of one big typical autistic trait. You ask other people if they think you are weird and accept it to be true when they say no.

Allow me to clarify. When I say I asked them if I was weird, I didn't literally ask them "Do you think I'm weird?"

I knew that some people might lie or have some fun with me if I came off in a certain way. That's why it was important to craft different ways of asking the same question and framing it in a way ensured the greatest chance of an honest answer. If they were the sarcastic and joking type, it was important to cut through that and frame them in a way that restricted their responses, increasing the chance of a response 'worth' more.

I picked people who knew me best and were more likely to give a serious response, or at least people I could frame in a way that might give a somewhat reliable answer. I didn't believe any of the responses -I have trust issues- but I did assign each response a 'value' based on how true I thought it might be. I crafted different ways of wording it for each person and waited until it felt 'right' to ask. I only asked them in private and no-one else was within earshot. I didn't bother with people who didn't know me well or were unlikely to give a reliable answer.

Beside the way I worded my questions, I just did what felt natural. That involved constructing a 'dummy' of the person in my mind, then tested the different ways it interacted with stimuli until I achieved the desired outcome. More or less. It was all done by what I felt would work and what wouldn't. That produced consistent results. On the rare occasion something didn't work, I worked out why it didn't.


Neurotypicals telling autistic people about themselves without asking or considering input from autistic people is a near universal problem. Although this is changing, describing what is "wrong" with autistics instead of giving a non sugercoated balanced picture is another problem.

I am a outlier with this view but unless a child is really struggling I would not tell them they are autistic. I used to have the opposite opinion. Having parents tell in a balenced way with input with the child is much better then your parents did but with the internet and real world stigmas and misconceptions running rampant it is often too much for non mature person to handle.


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“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


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10 Aug 2016, 5:29 pm

There is a problem with you - but I wonder if its autism related.

You don't know for sure you are autistic (past diagnosis could be wrong or at least exaggerated) but you are mimicking the symptoms and start to believe you are? And what's worse - you think you have Alexithymia despite knowing your feelings? Just because you are unsure if you understand them properly? And think thats the reason why you dont see autism in you? Medicine student disease much? Mixed with an actual mental disability...

You can't fit to everything people tell you about yourself or what you read. Step back and look at yourself, try finding your real you without all those opinions. Noone can tell you who you are but yourself.
You can be autistic - who cares? It's not like autistic people can't have friends and successful life.

Focusing on problems is a trap. I also realized I am getting into it so I am feeding my brain with "I can do anything I want and my diagnosis doesn't describe me". And it helps. Even sensory issues are easier to stand when I focus on "I can stand it" instead of "I am going to shutdown if it keeps going!".

And about Alexithymia - it often happens in people with Aspergers but not with everyone. I am one with it, but I learned to recognize my feelings past 2 years so its pretty much cured now. I can recognize when I am happy, sad, frustrated, tired, confused, disappointed, curious, impatient, scared, anxious, surprised and much more. 2 years ago I could only say if I am feeling good, bad, "nothing" or "something in the middle". I still remember the confusing times when psychologists asked me how I am feeling about something and I just didn't know what to answer. Now the only thing that bothers me is my stomach sometimes getting "scared" for no reason.
My psychologist taught me how to do it.
He was saying random words describing emotions whenever I said I don't know how I feel and together we were looking for the right answer, it was pretty hard "Happy?", "No. I don't think so?", "Sad?", "No, not really", "Confused", "A bit, maybe?", "Disappointed?", "That might be it! It seems I was disappointed back then!".
He also explained that "Felling like I couldn't do it." is not a feeling/emotion and I need to focus more on what emotion I actually felt.
I also got better with recognizing feelings in others since then. I can read some facial expressions - and I became skilled in using facial expression myself to communicate how I feel(although my learning material is anime so my facial expression are quite odd :lol:).



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10 Aug 2016, 7:14 pm

goatfish57 wrote:
I am guessing that you are a young adult and have an entire lifetime waiting for you to enjoy. Getting past our childhood demons is part of becoming an adult. You are lucky, the social impairment common with autism is not an obstacle for you.

Ask a counselor for advice on how to proceed with putting your diagnosis behind you.

PS: SoManySpoons, your question example reminded me of when a girlfriend asks about how she looks in her favorite jeans.


The answer, in case you are interested, is always "GREAT! I love those jeans!" No matter how awful they are. :wink: <- that wink is because this is a little funny. Not because you shouldn't follow that advice. Always follow that advice. Your life could be altered by failing to do so.



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10 Aug 2016, 7:34 pm

John L wrote:
It's a bit complicated, so for clarify these are the main events in the order they occurred:
- Parents tell me they think I may have a mental disability.
- Moved houses and schools.
- Parents voice their concern again, but this time they describe the symptoms.
- I gradually break down over the following 1-2 months.
- Diagnosed.

The first time they told me about it they didn't describe the symptoms, so I just thought "Well, I seem fine and I'm enjoying life, so it doesn't matter." then forgot about it soon after. I did ask a few friends if they thought anything was wrong with me, they said no, so I didn't press any further.

We move houses and schools a few months later. Change never bothered me - I was actually excited to move because I got to live in the city and meet new people. So I went to the new school, interacted with people, did my work, no problems at all. Then one day, seemingly out of nowhere, my parents speak to me about me having a mental disorder, but this time they describe the symptoms and told me what was wrong with me (spoiler: they listed almost every symptom). It would take a while to explain what happened to me, if you're interested in hearing what it did.



Well, we don't know each other. I can't tell what's really going on from just forum posts. Even if I knew you personally, it sounds like it would take a while to sort it out.

What you are saying here, is that you think your parents, mostly your mother, labeled you as mentally disabled out of some kind of internal need of their own. That you were fine and that she hurt you by branding you with a label that was completely inappropriate. Then she spent a few months grooming you and your father and teachers to believe her label. Then she spent thousands of dollars (and probably a good bit of manipulation of doctors) to get medical reinforcement for her self-diagnosis. And that the doctors where wrapped up in this deceit and diagnosed you with a developmental disability when really what you were was traumatized by your mother's abuse.

That is Munchausen by proxy syndrome. Its extremely rare, but it is possible. By far, the simpler scenario is that there was something that was really going on with you as a kid. It might not have been autism, but something was going on with you that made your parents concerned. You didn't really like what happened next, and it caused you more pain, because you didn't get the support you needed when you moved.

If you happen to be a survivor of child abuse, and not a kid who had autism, I hope you get some help to sort it all out. That's a pretty big deal.

In the mean time, as I said before, you are pretty normal to want to spend some time exploring an identity that doesn't include being disabled. I, for one, totally support you in that. Just remember that non-disabled people need help, too. There's no shame in going to talk to someone about all this childhood stuff.



John L
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10 Aug 2016, 11:38 pm

somanyspoons wrote:
it sounds like it would take a while to sort it out.

I agree - what I hope to get from here is insight and perspective into the condition. It's a stepping stone.

somanyspoons wrote:
What you are saying here, is that you think your parents, mostly your mother, labeled you as mentally disabled out of some kind of internal need of their own. That you were fine and that she hurt you by branding you with a label that was completely inappropriate. Then she spent a few months grooming you and your father and teachers to believe her label. Then she spent thousands of dollars (and probably a good bit of manipulation of doctors) to get medical reinforcement for her self-diagnosis. And that the doctors where wrapped up in this deceit and diagnosed you with a developmental disability when really what you were was traumatized by your mother's abuse.

I don't think she was aware of what she was doing. My dad tends to agree with anything she said, there was not much convincing needed. I was crying throughout the diagnosis so I rarely said anything. It was conflicting - I didn't want the diagnosis, but I wanted it because it meant getting fixed, so I tried to make sure that happened. It's a bit like trying to escape a burning building, but in order to do so you need to get burned.

I was afraid to 'challenge' my mum when she was talking to the pediatrician about all the things 'wrong' with me. So when I was asked a question I answered just loud enough that the pediatrician could understand, but not my parents. My mum told me to speak louder, so I say "Never mind" because I know the pediatrician heard (I just realized that I'd need to recognize facial expressions to discern this), but unfortunately she then told my parents what I said. I tried changing the topic several times because what my mum was saying was untrue, but I was afraid to challenge her.
Do you want to know the funny part?
In my diagnosis it says: "Some verbal problems" and "Tangential to the conversation" that's just priceless

I think she never felt connected with me because she wasn't home for longer than a few days each month, even then I was frequently off playing with friends. A mental disorder may have been appealing as it offered her the illusion of understanding and connecting with me, and suggests why she's so rigid with her interpretation (I mentioned before how she got angry when I tried sharing my perspective). There were some behavioral issues -though they never left the household- but they did not stem from a lack of Theory of Mind. That might have contributed to the appeal of a diagnosis - it's the "We're not at fault for his behavior. There must be something wrong with him." My 'degradation' following them informing me of everything wrong likely led to a confirmation bias.

According to my parents I struggled with friends, didn't know how to socialize, was bullied, couldn't handle loud noises, easily distressed by changes, and bunch of other crap. Recently I contacted some childhood friends who knew me really well. This is what my childhood best friend said:
"You were very social and seemed to get along with everyone and never had any issues. You were fun and competitive and just a great person to be around. Always there for your mates when ever they needed it."

It was nice to have that confirmation.

somanyspoons wrote:
because you didn't get the support you needed when you moved.

Just remember that non-disabled people need help, too. There's no shame in going to talk to someone about all this childhood stuff.

I dislike asking for help because I see it as a sign of weakness. I don't feel troubled by my past or hold any ill feelings towards my parents or anyone else - that seems like an exhausting way to live life. I haven't forgotten what they did, and it will play into future decision, but there's no hatred or whatever.

My diagnosis just annoys me because I frequently wonder if I'm doing things correctly. For example, "You are now aware of your breathing and blinking." That probably made you consciously breath or blink for a moment. It's like that, but with other things like swinging my arms, if I'm walking correctly, etc. They have never been a problem, but I become aware of them and wonder if I'm doing it right, even though I know there isn't a problem. I can't let go of it because there's that lingering doubt in my judgement.


Kiriae wrote:
You don't know for sure you are autistic (past diagnosis could be wrong or at least exaggerated) but you are mimicking the symptoms and start to believe you are? And what's worse - you think you have Alexithymia despite knowing your feelings? Just because you are unsure if you understand them properly? And think thats the reason why you dont see autism in you? Medicine student disease much? Mixed with an actual mental disability...

Even after ruminating for years, reading about the disorder, and asking old friends for their view of me I just can't seem to move on. Nearly all the evidence points towards my diagnosis being incorrect. But no matter how hard I try I can't let go of the diagnosis - it's frustrating.

I haven't been told I have Alexithymia, but it's a possibility I want to rule out as it may impact my perception, hence this thread. I'd like to understand Alexithymia so I can either rule it out or factor it in - if it's the former, which is likely is, then it may chip away at my inability to move on.

If I do have Asperger's, then I don't want to be ignorant of how it impacts my life. Cognitively I know I don't have it, but it's the fear of ignorance that stops me from moving on and forgetting about it. If I do have it, what damage could it do to my life if I ignore it? Ironically, by hanging onto the slim possibility it's true the quality of my life is still reduced (not implying it does for others).

Then there's the issue of doubting my own memory. I questioned if I'm remembering things correctly, or if in some delusion I'm choosing to remember things a certain way. My mind is all about seeking different ways of seeing things. I need to see the bigger picture and make sure what I'm seeing is the reality of things or something very close to it.

Kiriae wrote:
He was saying random words describing emotions whenever I said I don't know how I feel and together we were looking for the right answer, it was pretty hard "Happy?", "No. I don't think so?", "Sad?", "No, not really", "Confused", "A bit, maybe?", "Disappointed?", "That might be it! It seems I was disappointed back then!".
He also explained that "Felling like I couldn't do it." is not a feeling/emotion and I need to focus more on what emotion I actually felt.

I can recognize when I am happy, sad, frustrated, tired, confused, disappointed, curious, impatient, scared, anxious, surprised and much more. 2 years ago I could only say if I am feeling good, bad, "nothing" or "something in the middle". I still remember the confusing times when psychologists asked me how I am feeling about something and I just didn't know what to answer.

I've researched emotions and the variety of physical symptoms that might accompany them. I also spent months self-analyzing and picking apart what I feel. So I'm fairly sure I know what I'm feeling and seemed to have a pretty good grasp on that throughout my life. Though I can't help but wonder, "Am I overlooking something obvious?" (this is probably the doubt I mentioned before).

Part of the issue is that my emotions are really turned down. They used to be slightly higher when I was a child, but near the start of puberty (a year or two after my diagnosis) they dulled quite a bit. A similar thing also happened towards the end of puberty. I still care about things, but it's far less than it what it used to be; it's rare and fleeting. So I'm not entirely sure if that's just an inability to detect emotion, or if they're dulled.



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11 Aug 2016, 8:46 am

John L wrote:
I was afraid to 'challenge' my mum when she was talking to the pediatrician about all the things 'wrong' with me. So when I was asked a question I answered just loud enough that the pediatrician could understand, but not my parents. My mum told me to speak louder, so I say "Never mind" because I know the pediatrician heard (I just realized that I'd need to recognize facial expressions to discern this), but unfortunately she then told my parents what I said. I tried changing the topic several times because what my mum was saying was untrue, but I was afraid to challenge her.
Do you want to know the funny part?
In my diagnosis it says: "Some verbal problems" and "Tangential to the conversation" that's just priceless


It's all wrong, you should be able to speak with the doctor face to face and what you said should be kept behind closed door, without your parents interfering. A proper psychiatrist should be aware that people often act differently in company of parents than when they are seeing a doctor face to face, without outsiders.
And that diagnosis is a process, not a single meting...

I myself slipped under the radar when I was 17 because I went to Asperger diagnosis with my mom and I put on my "a good child" mask, saying for example that my lack of interest in opposite sex is because "I am focused on studying and think that the proper time to date guys is yet to come" - despite not being able to imagine myself ever loving anyone (first time I feel in love was when I was 20 and it took me another 2 years to realize what I feel is probably love although I was still not sure). After that meting doctor said I probably don't have Asperger but he would like to met again make sure. And I said there is no way we come because every meting was worth 110PLN and I didn't want mom to pay for looking up some weird mental disorders in me and I though the doctor just wants to get money from us. I didn't know what Asperger is back then. I only knew my grandma was sure I have it because she read about it in some newspaper and she convinced my mom to get me assessed. I thought they just want to make me crazy. I was not feeling crazy. I had trouble with social interaction but it was not enough reason for me to go to "psychiatric hospital"(I thought that having an diagnosis means they send you to mental hospital and lock you up).
I was diagnosed 8 years later, after I did my own research on Asperger and realized grandma was right.


Anyway - proper diagnosis requires a few meetings, both with parents and face to face. You could probably say a lot about yourself if parents were not there. And what you say would give psychiatrist an idea about whats going on with you. Even if you happen to be in the spectrum(which I doubt) there is another, stronger issue with you. The dependency on others opinion and inability to speak for yourself. Being unable to trust own feelings and memory... Those are not really traits on ASD. Can be ASD comorbids - but can also be totally unrelated.
Also your emotions degrading at puberty is unsettling - they usually go wild at that time and get hard to control.
It it time when most personality disorders start and poor affect is a sign of many of them.
I didn't understand my feelings but then and I was restricting them with logic but I definitely had feelings and they were even stronger than when I was a kid. I was often crying back then and wanted to kill myself yet it was also the time when my special interest were the strongest and I loved them(I didn't kill myself despite my miserable social life because it would mean I won't be able to read my favorite book anymore, lol). I was depressed but extremely happy at the same time and it wasn't a contradiction.



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11 Aug 2016, 10:12 pm

Some years ago, while I was in therapy, my therapist would ask me how I was feeling, and I had a lot of trouble answering those questions because my ability to know how I was feeling was very restricted. I could identify anger easily, and fear, but beyond that the territory was pretty murky for me. I conflated excitement with terror, for instance.

I wrote down on paper a long list of "feelings" words, like joy, sadness, elation, curious, trepidation, anxious, happy, relief, guilty, ashamed, eager, excited, delighted, calm... and so on. I carried that paper in my back pocket for months, taking it out when I knew I was feeling something but didn't know what. I'd go down the list and look for things that I could identify with. (My list wasn't as long as this one, but here's a list with a lot of words that one could choose from: http://www.psychpage.com/learning/libra ... lings.html )

That helped me a lot with being able to identify my own feelings. I'm a lot better at it now. I don't carry the list any more, but sometimes I still look up feeling words, and I often ask people bluntly about their feelings when they tell me about events that they are obviously feeling strongly about. I ask straight up, "So that makes you anxious?" or "Did that scare you?" or "Did that give you a feeling of accomplishment?" I might have to say something to make it clear that I'm sincere in my question because I am really interested, but I think people can tell that I'm doing it because I really want to know how they feel, so they are good about clarifying for me.