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MushroomTacos
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09 Jan 2022, 9:20 pm

I was diagnosed with Asperger's syndrome when I was 12 years old, but I'm having doubts about my diagnosis. I'll note that my ASD was described as "particulatly mild" by the doctor who diagnosed me. I will be refeerring to "Asperger's" as "ASD" from this point forward.

I was diagnosed with ADHD as an adult, and I've discussed it at length with psychologists and psychiatrists and I am in the 99th percentile. It has been untreated until about a month ago. My other diagnoses include Tourette's syndrome, PTSD, BPD (which has been described as severe), OCD, Generalized Anxiety Disorder, Major Depressive Disorder, and I am prone to panic attacks. I am also non binary and queer, and assigned male at birth.

The symptoms I've had that align with ASD include or have included social difficulties, meltdowns, sensory issues and verbal communication issues. What makes me question my diagnosis are the roots of the behaviors attributed to my ASD diagnosis. I was very socially withdrawn as a child and I seldom fit in with my peers. I fit in with girls quite a bit better than boys in primary school because I had more in common with them and I understood them quite a bit more. I began to socially isolate around the age of 10 because I had developed a fear of social interaction. I was abused and emotionally neglected at home, so I began acting out in school, crying a lot when it wasn't appropriate. This was attributed to autistic meltdowns, when I was doing so in order to get attention from teachers and counsellors, who showed me significantly more care and compassion than my parents ever did.

I was bored in school, and started failing classes around seventh grade when I was diagnosed with ASD, along with OCD, anxiety and depression and I was put on medications that made me extremely tired and unable to focus in school. I used to get by with straight As because I already understood the material, so I could skate by without paying attention, studying or putting any effort whatsoever, but when I started coming across material I didn't understand and had zero interest in, I started failing classes. I normally pretended to may attention in class while just drawing instead because I could not sit and focus on one thing for an hour straight.

I have never had a routine if I had a choice and I've always disliked routine. I loved when there were changes to the daily routine because I was bored otherwise. As an adult, I have struggled to have any sort of routine or structure. Abiding by routine has always felt restrictive to me. I never had restrictive play as a child. I had accomodations in school for ASD that didn't help me at all and I didn't understand how they were supposed to help. They didn't meet any of my needs.

There are quite a few things that come naturally to me that other autistic people I know. I don't really take things literally, I'm not a blunt or direct person and I can feign interest pretty well. I can tell if somebody is hinting at something or if somebody isn't being truthful with me, but the way I react to it depends on the situation. For example, when I was 16, a good friend of mine lied to me about having cancer. I could tell she was probably lying to me, but I played along with it and expressed concern and sympathy because on the off chance she actually did have cancer, I knew it would be really messed up if I questioned it. I wasn't worried and I could tell by her tone she wasn't being truthful with me. I also hint towards things with people which has caused confusion with autistic friends of mine. I've tried to change that with them because I know it's frustrating, but it's hard to turn off.

Being in autistic groups online and talking to autistic people, I've come to understand why a lot of social rules are arbitrary and don't make a lot of sense, but I do those things anyway. I get why certain things come off as weird to neurotypicals because they tend to come off weird to me. That has changed as I've interacted with the autistic community over the years, but I understand why. I don't really have to remember specific things to navigate the world socially. When I was a kid, I was a loner and afraid of having to many eyes on me, so I withdrew, but I became a lot more social as an adult when I got to be around other LGBTQ people and realized that my social difficulties were not rooted in inability, but rather fear and trauma. I has criticized harshly growing up and I assumed that I was a burden on everybody, so I isolated myself. I was hurt a lot by the people I loved, so I put up walls. I was bullied for being effeminate, and when I realized I liked boys instead of girls, my anxiety and depression worsened. I tried to ask out girls in middle and high school but that never panned out because I was never really interested in them romantically. I wanted to prove I wasn't gay and that I was a masculine straight guy, so I did some pretty cringey things to create this masculine facade and fit in with guys, which did not go over well, so I struggled quite a bit socially in that regard.


So, I don't know. I'm in an intinsive outpatient therapy program and I can speak to a psychologist easily, but I haven't told them about my ASD diagnosis. I've never had a therapist who wasn't surprised when I told them about the diagnosis, especially given the fact that I understand my emotions deeply and how connected I am to them. The tone always tends to change when I bring it up and sometimes a clinician will start talking to me in subtle ways that feel patronizing, so I avoid it. I'll likely bring this up with them, but I'd like to hear some of your thoughts on the matter as well. I hear a lot about the underdiagnosis of autism, which, don't get me wrong, I KNOW exists, but I never hear anything about people being misdiagnosed with it.



timf
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10 Jan 2022, 8:04 am

People used to go to a doctor to get information they would use in making decisions. Today most go to a doctor to be told what to do. A diagnosis may be wrong or off. If you look at it as a medical opinion of one person, it might allow you to consider other possibilities and find what will actually be helpful.



Double Retired
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11 Jan 2022, 11:02 am

Obviously we can't diagnose you. But it might be worth noting that ADHD and ASD share some traits...might that have been a source of confusion when you got your diagnosis?

Possible sources of additional info:
-=-Autism-Spectrum Quotient Test
-=-Aspie Quiz Registering is optional!


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MushroomTacos
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26 Jan 2022, 7:51 am

Double Retired wrote:
Obviously we can't diagnose you. But it might be worth noting that ADHD and ASD share some traits...might that have been a source of confusion when you got your diagnosis?

Possible sources of additional info:
-=-Autism-Spectrum Quotient Test
-=-Aspie Quiz Registering is optional!


I think there was some confusion with certain ADHD symptoms that had some similarity to ASD. I was diagnosed when my grades slipped from straight As to failing most classes. This happened because suddenly, I found myself not immediately understanding what I was being taught. I had skated through my first 7 years of schooling because I already knew all of it or could figure it out quickly. I was suddenly faced with the realization that I had no idea how to just sit down and study something or put effort into anything. I also had interests that I enjoyed more than whatever was being taught in school. Not obsessive interests, just interests that I engaged in instead of school because school was so boring to me. I could hardly stay focused on those interests, either. I was given accomodations typically given to autistic students that really didn't help. I didn't need a quiet room to take tests, for instance, I needed help focusing on what I needed to be focusing on.

Also, just took those two tests.
AQ score is 10
Aspie Quiz: Neurotypical score 178, Autism score 52
Interestingly, the Aspie quiz asked multiple questions specifically about synesthesia, which I have multiple forms of lol
Image



nca14
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26 Jan 2022, 8:20 am

MushroomTacos wrote:
I have never had a routine if I had a choice and I've always disliked routine. I loved when there were changes to the daily routine because I was bored otherwise. As an adult, I have struggled to have any sort of routine or structure. Abiding by routine has always felt restrictive to me. I never had restrictive play as a child.(...)

I am rather the same!

And I was diagnosed with Asperger's syndrome when I was nearly 17 years old. I also rather do not take things literally. But I think that I definitely have certain sort of autism, but obviously not "stereotypical" like Kanner's syndrome (childhood autism, early infantile autism, "rigid" autism). I have severe mental disorders, I am in some way markedly "asocial" since I remember, but I have "expansive personality" and I am definitely not asexual or aromantic despite having seriously atypical sexual inclinations. I am generaly significantly disabled due to my pervasive developmental disorders and mental illness (but my disability is not as bad as having no sight), I have social pension and care allowance.



Double Retired
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26 Jan 2022, 2:18 pm

MushroomTacos, what kind of doctor "diagnosed" you when you were 12? Did you get a formal diagnosis or was it just the doctor's impression? Sigh. You were 12. You might not know!

When my bride and I were trying to decide if I might be a high-functioning Autistic (turns out the correct diagnosis ended up being Autism Spectrum Disorder, Level 1 (Mild)) she was surprised to discover she had many Autism traits, too! The confusion was because the high-end of ADHD shares many traits with the low-end of Autism. She is ADHD and I persuaded her to go back to her disorder and leave mine alone by showing her this chart:

Image


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nca14
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26 Jan 2022, 6:41 pm

I have "varied narrow interests" (rather not useful in earning money). I do not like boring routines, although I can rigidly adhere to some activities. "Stereotypical autistic sameness" is boring for me! So I am not autistic and maybe have just ADHD (or even do not have ADHD and even more I do not have ASD)?



Double Retired
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26 Jan 2022, 7:22 pm

MushroomTacos and nca14,

Apparently it is possible to be both ASD and ADHD. I don't know how the distinguishing traits apply in that case because they would seem to me to be contradictory. So, I guess that is why an assessment should be done by a professional, not me.


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MushroomTacos
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27 Jan 2022, 6:42 pm

Double Retired wrote:
MushroomTacos, what kind of doctor "diagnosed" you when you were 12? Did you get a formal diagnosis or was it just the doctor's impression? Sigh. You were 12. You might not know!

When my bride and I were trying to decide if I might be a high-functioning Autistic (turns out the correct diagnosis ended up being Autism Spectrum Disorder, Level 1 (Mild)) she was surprised to discover she had many Autism traits, too! The confusion was because the high-end of ADHD shares many traits with the low-end of Autism. She is ADHD and I persuaded her to go back to her disorder and leave mine alone by showing her this chart:

Image

Apparently it was an official diagnosis, but I can remember some things that could've skewed their assessment. My "meltdowns" were cries for attention because of emotional neglect at home, and I can remember one instance when I was 12 in which I kinda froze up when a girl talked to me (I'm AMAB). I was embarrassed and told the doctor that I do that with everybody. I'm also emotionally walled off from my family because of the abuse, but I'm extremely emotionally vulnerable and open with my friends. I have severe BPD, so that comes with it's own set of issues. I understand my emotions intimately and I have a great deal of insight into my emotions and trauma. I've had therapists tell me I've basically done half the work for them lol

Also, with that chart, I'm certainly ADHD instead of ASD, if I go off of that. I've never had a routine before and I can't stick to one for more than a few days. I have a variety of interests, some stronger than others, but they're varied. Languages, History, Biology, Psychology, demographics/ demography, urban planning, and quite a few more. I'm not fixated on one thing very often. I can also attribute most of my social struggles to inattentiveness. Like, I've missed social cues because I got distracted by something, then when I bring my attention back to the social interaction, I pick up on it.



nca14
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27 Jan 2022, 8:10 pm

I even constantly or even constantly did not think about making eye contact (especially looking at someone's eyes) before I read that poor eye contact is a symptom of mental disorders when I was about 16 years old. I do not remember having emotional need of being loved by someone (not in sexual and/or romantic way) and I did not care about making friends (especially close friends), not in sexual and/or romantic way, since pre-school times to now. I was not sad due to that. Despite it I am generally happy and can feel pleasure (for example from eating, drinking or interests). So I had no close friend(s) in my life.

I am very poor in dealing in difficulties or discomfort (especially physical discomfort). I have problems with dealing with unpleasant sensory feelings despite having normal or relatively normal sensory processing (without or almost without indiosyncratic hyposensitivity or hypersensitivity).

I think that people with autism can have multiple interests, but they rather tend to be obsessive, narrow in themselves, peculiar or not useful in "normal" life (especially occupational, such a person can do not think about earning money "seriously" and can live "in own word").

Doing the same thing all the time, especially in specific time, looks boring and unpleasant for me, it looks like OCD or something similar. Surprises can be very nice for me. But I have "obsession" about safety and comfort.

I had period when I have "severe stims", really exciting, "euphoric", which could be associated with loud behaviors (which quite often were problematic for others :( ), I have many different stereotyped, autostimulating behaviors during them. I like to walk "without purpose" and "think pleasantly". I like to fidget with "plastic" things (sometimes even disgusting ones :( ) since childhood. This fidgeting could be long, maybe for example for some hours.



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27 Jan 2022, 10:24 pm

MushroomTacos,

We can't diagnose you. But you seem to have a valid case for investigating further.

nca14,

What can I say? We can't diagnose you. But you seem to have a valid case for investigating further.


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MushroomTacos
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27 Jan 2022, 11:03 pm

Double Retired wrote:
MushroomTacos,

We can't diagnose you. But you seem to have a valid case for investigating further.


Not expecting anybody here to diagnose me. At this point it's an interesting discussion, if anything.



Foxibus
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30 Jan 2022, 7:50 am

MushroomTacos wrote:
I have never had a routine if I had a choice and I've always disliked routine. I loved when there were changes to the daily routine because I was bored otherwise. As an adult, I have struggled to have any sort of routine or structure. Abiding by routine has always felt restrictive to me.


This is me. It's not that I don't like routines, but I can't learn them - even when doing something I've done for years I have to stop and remind myself what comes next - and I keep thinking I can see a better way and changing them. I've been self employed most of my working life because I drive employers crazy.

I also can't be orderly in my work, and I can never, never remember to clear up as I go along. Just cooking a simple meal I leave the kitchen a disaster zone.

My wife, who is a neat freak, poor woman, says wryly that if she had to marry an aspie, why couldn't it have been an obsessively tidy one? :?


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nca14
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30 Jan 2022, 2:34 pm

Double Retired wrote:
nca14,

What can I say? We can't diagnose you. But you seem to have a valid case for investigating further.

So I do not have autism? I have "obsession" about it (if I really have autism or I was misdiagnosed with a pervasive developmental disorder). I would name my condition as a serious case of autism, but not as a case of "stereotypical" autism, I noticed that my PDD is not so similar to Kanner syndrome. It is very, very bad that the word "autism" is associated only with Kanner syndrome and other autistic disorders can be misnamed as learning disorders (like NVLD), ADHD, personality disorders, emotional disorders, "psychotic disorders which are not PDDs" etc. I function much worse than many people with mild, but "stereotypical" autism! I have ruling of disability not only due to mental illness, but also due to pervasive developmental disorder. It looks good that I have ruling of disability due to PDD also, not only due to "normal" mental disorders.

Severe ADHD is rather less disabling than ASD level 1? I would say that I have PDD level 2. Not just level 1.



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30 Jan 2022, 4:02 pm

@MushroomTacos I’m sorry about the abuse and neglect at home. I’m sure other people are as well. But I’m guessing they think, it goes without saying. I think it’s better to go around and say it!

Okay, about autism spectrum . . .

The fact that you didn’t find school accommodations helpful is a pretty good line of evidence that you’re not spectrum.

You may be what I call a “bridge person” — meaning having some spectrum traits but not others. And I personally very much welcome a person who’s a bridge person here at WP :jester: , and think they can be a part of some great conversations.

I don’t think it has come up. Do you stim, like a poker player rhythmically fiddling with chips? Or like a baseball player who has stereotypical movements? Or like Steph Curry of the NBA who likes to chew on his mouth guard during brief stoppages of play? The purpose of a “stim” can be to channel stress and/or to help maintain concentration.



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01 Mar 2022, 12:45 pm

nca14 wrote:
So I do not have autism? I have "obsession" about it (if I really have autism or I was misdiagnosed with a pervasive developmental disorder). I would name my condition as a serious case of autism, but not as a case of "stereotypical" autism, I noticed that my PDD is not so similar to Kanner syndrome. It is very, very bad that the word "autism" is associated only with Kanner syndrome and other autistic disorders can be misnamed as learning disorders (like NVLD), ADHD, personality disorders, emotional disorders, "psychotic disorders which are not PDDs" etc. I function much worse than many people with mild, but "stereotypical" autism! I have ruling of disability not only due to mental illness, but also due to pervasive developmental disorder.

Sounds like you were diagnosed under ICD-10, which is similar to the American DSM IV. The upcoming ICD-11, which is similar to the DSM 5, will define "Autism Spectrum Disorder" (ASD) to include most of what was previously called "PDD-NOS" (pervasive developmental disorder, not otherwise specified) or "Asperger's syndrome," as well as "Kanner's syndrome." (See this Spectrum News article about ICD-11. See also this Autism Europe page.)


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