Fed up with other thinking they have aspergers

[kenaij]

Please be careful when focussing on struggles women and minorities have. It often times can come across as a person thinking the group of white males do not struggle with the same thing. As a commonly used example like suicide rates are apparently much higher in white males than any other sub-group. Atleast in america they are.

It might be because I take things to personal but when reading some of the comments above it seems to assume only women and minorities are misdiagnosed because of the symptoms they mask. But I can assure you. Personally, as a white male, I also mask all of the time. I know it is generally a more female trait. But there are probably plently of males like me. I`m not officially diagnosed but my assumption is backed by numerous selftests. The way I feel against the way I act. Probably 90% of my interactions with humans are fake. The only exception to this are my wife and kids where it is probably atleast lower than 50%. Whenever I tell someone I think I might be autistic the thought gets dismissed right away. Only my parents and wife seem to understand, and a colleage who has an autistic son.

But I still stand by the believe that only an official diagnosis can allow me to really claim to be autistic. The same goes for my son. I think he is autistic because he is a lot like me and my father (he is diagnosed). But I do not say my son is autistic. But I do handle his struggles as if he was. And that approach seems to work for him. Might get him tested if he ever runs into problems outside of what my wife and I have influence over.

 

[Ronald Zeeman]

I was struggling to walk a few months ago medical professional diagnosed me, I am not impressed with expert opinion. two other doctors question the first opinion took third fourth doctor to realize I may have been correct
So I will trust my own diagnosis over any professional I'm on the spectrum and not struggling, no idea what masking is unless as an extravert keeping my mouth shut is masking.

 

[vergil96]

I was struggling to walk a few months ago medical professional diagnosed me, I am not impressed with expert opinion. two other doctors question the first opinion took third fourth doctor to realize I may have been correct
So I will trust my own diagnosis over any professional I'm on the spectrum and not struggling, no idea what masking is unless as an extravert keeping my mouth shut is masking.

Well, the medical opinions are based on whether you have persistent deficits e.g. academic or very visible. At least when it comes to autism. First of all, someone might be on the autism spectrum and not struggle, this would be just a truth about them. It's not less true if they aren't harmed by autism. Second of all, someone might struggle internally, behind closed doors, and it might still poison their life, even though the deficit isn't constant.

 

[2Fragile2TakeCriticism]

I know what you mean. It seems that everybody who is shy or depressed "might have Asperger's". Then when you protest they say "well every autistic case is different, you don't have to have every symptom, and some of us are so excellent at masking that we could have all the symptoms and you just can't see it".

So let's just say everyone in the world has an ASD and the more NT someone is the more they're just brilliant at hiding their ASD.
That's what I'm beginning to believe these days lol.

Actually, I’m very much a part of “they”.

 

[Ronald Zeeman]

The only struggling I ever did was trying to get noticed when employed educational upgrades left jobs to improve position, worked whole career without career mobility really annoying despite being told numerous times I was the top performer in the various company's history. The only clue until I diagnosed myself was I was told I'm not a people person. I'm not a shrinking violet, not scared to speak truth to power. IF you're a manager and your wrong I Will let you know.

 

[LadyS]

I'd also consider "social blindness" as something that perhaps some with autism might not realize they have, partly because they lack in self awareness or lack the interest in being social therefore might not notice social cues. Instead they think others are not up to their level when it's just being on a different social wavelength than the majority. I have a particular ASD relative who thinks nothing is wrong with him but doesn't seem to get that his social skills affects those around him, often making them uncomfortable, but doesn't notice because he can't read people.

I keep thinking that ASD can be considered a social disability too, not everything has to be about the physical and intellectual parts. Humans being social species need that to survive too (unfortunately).

 

[The Pandector]

Same, but not sure the intent is always to insult. If folks knew the depth of a particular struggle, I'm sure they wouldn't be so quick to dismiss, trouble is only aspies really know and even on this forum I get a sense many people don't want to see themselves as disabled, yet regardless of our 'gifts" and "differences" our brains are very vulnerable if left to fend for ourselves in the NT jungle. If you don't know you don't know, then how can you know you don't know? Eventually someone has to take you by the hand. Friends are so important aspie and NT. Be kind and maybe don't miss the chance to connect just a little bit everyday - neuroplasticity is a thing.

Interesting post, thanks.

You say many autists don’t want to see themselves as disabled, but…. I’ve wrestled with this. Disability is a problematic word for us. There are things my condition prevents me from doing. (I have ~7 million hours of guitar practice under my belt, can’t play worth beans. But I’m learning.) But that’s a narrow view.
Examples:
Is it a learning disability that I can only learn by reading, then only remember by doing? In my day, I developed myself well beyond my peers in my technical field; hard to conclude I have a learning disability.
Is it a disability that I have little tolerance for emotional foolishness and counterproductive social constructs? By God’s grace, I stumbled into positions in life where social detachment was a great benefit.
Confession: I’m severely ‘disabled’ by autism, no doubt, and it effects every aspect of my life.
However, autism frees me to do things that others might never attempt. As well, an autistic person may have significant intellectual advantages. ‘Disabled’ might better be reserved for those things we can’t do, not the things we do differently.

 

[Ronald Zeeman]

My closest analog in TV land is "House "he was an ass I am not. Like house I can read people. like going in crowd tell wife who is doing what and why surprises her. body language easy to read just ask fellow Aspie Temple Grandin.

 

[Atrapa Almas]

I think there are some missunderstanding about the diagnose, racial and minnorities stuff.

We know race is a term not valid among humans, because the genetic differences among people of different "races" are close to zero. The melatonine levels are such an small part of the human genome that I could be gennetically closer to a black male than to a white one.

On the other hand we know that the DIAGNOSED % of autistic white males is bigger than the DIAGNOSED % of whatever minority. Included women. Included poor white males.

So we (scientifics) have concluded that minorities are UNDER diagnosed. They only have access to cheap diagnoses that only check for very clear cases (level 2 and 3), while level 1 autism and people with autists traits are not diagnosed if the dont find and pay a very good profesional (above 1000 USD).

Also, the autism diagnose is no way close in accuracy to a cancer diagnose, you can get diferent results from different profesionals with the same titles. Specially for level 1, high masking, twice exceptional and difficult to diagnose cases.

On top of that, what we know about autism is changing every day very fast, even the autism definition is not clear and the DSM 5 criteria is focused on filtering who needs state money and who not.

So its not an easy topic. The experience from a level 2-3 who may think they are disabled is very different to the experience of a level 1 or of a 2e who is autist-gifted...

Many people tend to think their autism experience is THE true autism. But its a spectrum. It may be disability for some and a gift for others.

 

[Ronald Zeeman]

I Do not trust professionals, will debate them in their own field of expertise same issue many of us have like reading stories of student questioning their professors. than professor found his dogmatic teaching was incorrect. My older brother knew more calculus in high school then the math teacher teaching him. my older brother was disabled too late now. Either way my ability to visualize is a profound gift, I Would not trade for any thing.

 

[Judge]

My closest analog in TV land is "House "he was an ass I am not.

That's how I relate to "Doc Martin". While I like the show it continues at times to pain me to see Dr. Martin Ellingham making so many bad moves while still being very much in love with Louisa Glasson.

IMO his character all too often transcends autistic traits and behaviors into the realm of simply being a mean and utterly intolerant person. But then who knows? It may be indicative of those further along the spectrum than myself. I'm no sure....

 

[Ronald Zeeman]

That's how I relate to "Doc Martin". While I like the show it continues at times to pain me to see Dr. Martin Ellingham making so many bad moves while still being very much in love with Louisa Glasson.

IMO his character all too often transcends autistic traits and behaviors into the realm of simply being a mean and utterly intolerant person. But then who knows? It may be indicative of those further along the spectrum than myself. I'm no sure....

do not much serial TV , prefer u-tube must admit liked the house episodes where he dismissed transvers myelitis.
as a possible diagnosis three different episode, maybe if the resident at the hospital after my stroke. could have got a few tips rather than giving me an epilepsy drug for kicking in my sleep. I Told the doctor I had transvers myelitis
fifty years. He should go back to medical school refresh. Error almost put me in a wheelchair. had to convince my family doctor his Colleague. made mistake then he told me my stroke was caused by high cholesterol, not the case
another dumb doctor , next visit he sort of apologized when he got my blood test results. What are they teaching these guys.

 

[vergil96]

The experience from a level 2-3 who may think they are disabled is very different to the experience of a level 1 or of a 2e who is autist-gifted...

Oh, I have met plenty of people online who are convinced they are level 1 and have not gone though the official diagnostic process who refer to themselves as disabled, and at the same time told me that I have to "not understand" or have "severe autism" to have the kind of sensory issues that I have. Even though I went unnoticed until being 26 and even asked professionals if I have autism and they said that no. While if you do see what I struggle with when nobody else than my family is around then it doesn't take someone very qualified to spot that it's autism.

 

[Ken]

Agree.

1. These sorts of comments are minimizing.
2. I think the intent, though, is more altruistic. They just want to connect with you in some way. They don't have the perspective that we have, so at the very least, it's an innocent social faux pas. Many just don't know that what they said is going to be taken as an insult.
3. There are ways to explain a "condition" (ASD-1/Asperger's in this case) to a person like this. I will often explain that many people, from time-to-time, may exhibit isolated "autistic-like" traits and behaviors. This is normal. What isn't normal, and qualifies as a diagnosable condition, is the persistence of a group of traits and behaviors.
4. Yes, there are a few people out there that disregard any sort of neurological condition as if we have full control over our behavior, and that autism, ADHD, PTSD is simply a label for "weak", undisciplined individuals who just want attention or an excuse for their lack of self-control, or worse, want to "sponge off of tax payers" like a parasite. These people do not believe in "disabilities", nor do they have any interest in understanding. Their attitude is "Quit your whining and get to work, because I'm not paying your way." Obviously, I've heard these sorts of statements before.

Reminds me of:

 

[Ronald Zeeman]

I have personally gone through the last line on the phone while rep. told me it was not possible to do, my response I don't care I already did it here is the formula just make it we need it customer waiting. I do not have the raw materials on hand to make more myself.

 

[The Pandector]

Please be careful when focussing on struggles women and minorities have. It often times can come across as a person thinking the group of white males do not struggle with the same thing. As a commonly used example like suicide rates are apparently much higher in white males than any other sub-group. Atleast in america they are.

It might be because I take things to personal but when reading some of the comments above it seems to assume only women and minorities are misdiagnosed because of the symptoms they mask. But I can assure you. Personally, as a white male, I also mask all of the time. I know it is generally a more female trait. But there are probably plently of males like me. I`m not officially diagnosed but my assumption is backed by numerous selftests. The way I feel against the way I act. Probably 90% of my interactions with humans are fake. The only exception to this are my wife and kids where it is probably atleast lower than 50%. Whenever I tell someone I think I might be autistic the thought gets dismissed right away. Only my parents and wife seem to understand, and a colleage who has an autistic son.

But I still stand by the believe that only an official diagnosis can allow me to really claim to be autistic. The same goes for my son. I think he is autistic because he is a lot like me and my father (he is diagnosed). But I do not say my son is autistic. But I do handle his struggles as if he was. And that approach seems to work for him. Might get him tested if he ever runs into problems outside of what my wife and I have influence over.

You make great points. However , your main point seems impractical. You leave too many categories of autistic people out in the cold, which is where I’d be if I paid for a diagnosis.

On this forum, I have read plenty about misdiagnoses and people who went from one diagnosis to the next before finding autism. That means that even professional diagnoses are not always reliable, therefore not granting anyone the right to claim autism.

I’m self diagnosed and will never be professionally diagnosed. What would you have me tell people that may already suspect autism is a scam? “Well, I can’t really say I’m autistic, but…”? Or, “I have a number of strange and troubling traits… can’t really say why.”?

I say it when I need to, because autistic is what I am. OTOH, it may be that I’m actually an alien pod, and this is my normal state. My home planet memories may have been erased. I’m not positive that I’m human. But I’m so close to positive that I’m going to continue to consider myself an earthling and care for myself accordingly. I even claim the right to call myself an earthling, unsure though I am.

 

[kenaij]

You make great points. However , your main point seems impractical. You leave too many categories of autistic people out in the cold, which is where I’d be if I paid for a diagnosis.

On this forum, I have read plenty about misdiagnoses and people who went from one diagnosis to the next before finding autism. That means that even professional diagnoses are not always reliable, therefore not granting anyone the right to claim autism.

I’m self diagnosed and will never be professionally diagnosed. What would you have me tell people that may already suspect autism is a scam? “Well, I can’t really say I’m autistic, but…”? Or, “I have a number of strange and troubling traits… can’t really say why.”?

I say it when I need to, because autistic is what I am. OTOH, it may be that I’m actually an alien pod, and this is my normal state. My home planet memories may have been erased. I’m not positive that I’m human. But I’m so close to positive that I’m going to continue to consider myself an earthling and care for myself accordingly. I even claim the right to call myself an earthling, unsure though I am.

That last part is a little out there..........
But I get your point. Even though I still do believe only someone that has a diagnosis can claim to be autistic. And people who are not can only claim they suspect they are autistic.

I understand misdiagnoses is a thing. But granted you have a reliable medical professional he/she will judge your diagnoses based on the information given. That information could be incomplete or there could be a misunderstanding about either the question or the answer. Which would not be uncommon between two people.

I would like to note that my opinion is mostly colored by the country I'm from. I'm Dutch and our healthcare system is pretty good. It practically does not matter whether you are really rich or poor. As long as you have an insurance. Which basically everyone here is expected to have. Most if not all of your psychological diagnosis is paid for. Depending on your insurance you are either free to choose which medical professional you go to. Only the cheaper insurances provide a smaller pool to choose from. We go to a doctor that is close to the American GP. For free. And we present our mental problems. More often than not your GP will than give a reference to a specialist. As long as your GP has made the reference your insurance will pay at the minimum 70% (I believe) to almost all of the costs to get a diagnosis.
So where I am from. There is no financial reason not to get a diagnosis. Unless you cannot convince your GP your mental struggles are real.

 

[Crossbreed]

On one hand we say Autism is not an illness, autism is a different way to percieve the world and to process information. So we are moving from the old definition of illness, dissability, under-performance towards the "neurodivergence" stuff. The neurodivergence aproach tell us that our brains work different not worse. And that most problems come from society, enviroment, trauma and so on. Fine.

On the other hand, when someone claims "Hey I percieve the world and process the info in an autistic way" we told them: YOU CANT BE AUTIST IF YOU DONT SUFFER. In other words, to be autist its neccesary to be dissabled, ill and underperform.

ASD1 makes a person odd.
ASD2 & 3 is the same oddity with real disabilities attached [i.e. severe co-morbids].
The oddity is not a disability in the sense that severe co-morbids are, but it IS disruptive.
(Gifteds, without autism, have a similar disruptive oddity about them.)
That oddity, alone, can be jarring enough that we are marginalized (and all of the problems that go with that).

 

[The Pandector]

That last part is a little out there..........
But I get your point. Eventhou I still do believe only someone that has a diagnosis can claim to be autistic. And people who are not can only claim they suspect they are autistic.

I understand misdiagnoses is a thing. But granted you have a reliable medical proffesional he/she will judge your diagnoses based on the information given. That information could be incomplete or there could be a misunderstanding about either the question or the answer. Which would not be uncommen between two people.

I would like to note that my opinion is mostly colored by the country I`m from. I`m Dutch and our healthcare system is pretty good. It practically does not matter whether you are really rich or poor. As long as you have an insurance. Which basically everyone here is expected to have. Most if not all of your phychological diagnosis is paid for. Depending on your insurance you are either free to choose which medical proffesional you go to. Only the cheaper insurances provide a smaller pool to choose from. We go to a doctor that is close to the american GP. For free. And we present our mental problems. More often than not your GP will than give a reference to a specialist. As long as your GP has made the reference your insurance will pay at the minimum 70% (I believe) to almost all of the costs to get a diagnosis.
So where I am from. There is no financial reason not to get a diagnosis. Unless you cannot convince your GP your mental struggles are real.

Now I see where you’re coming from. If it were ‘free’ (an odd perception) then I would certainly seek a formal diagnosis.

You say your opinion is ‘colored’ by your healthcare situation. I’d go so far as to say you’re not even on the same palette, comparing apples to pomegranates. In my world, that one little difference makes it an entirely different equation.

Not to put words in your mouth, but maybe you could modify your ruling to say that no Dutch citizen should be allowed to say they’re autistic without a formal diagnosis. Because, as a US citizen, if I’m in a situation where I feel I need to reveal my condition, I am not about to tell people that I ‘suspect’ I’m autistic.

To delegitimize my hard-fought self-diagnosis by disallowing my use of the word seems harsh. As others around here have often noted, the medical professions are a long way from being infallible.

I recently had a pretty severe medical issue. The area around my solar plexus was so hypersensitive that I often had to hold my shirt away from my chest. My PCP explained this in a note to a heart specialist, who began our interview by mocking me holding out my shirt; he thought it was a silly assertion. I could fill pages with stories of medical professionals who don’t understand the nature of my condition, which doesn’t stop them from making authoritative pronouncements. BTW, it was a pinched nerve, which swelled abdominal muscles, nothing to do with my heart, which they tell me is wonderfully healthy (probably have a heart attack tomorrow).

I admit that my estimation of the value of a professional diagnosis is affected by a long lifetime of just such experiences. Nevertheless, if it were ‘free’, I would allow my countrymen to provide me with a formal diagnosis.

Note:
As I reread before posting, I wonder if it sounds as though I’m angry or offended. I’m not; I tend to express myself in rather stark terms. Be well, brother.

 

[Misty Avich]

ASD1 makes a person odd.
ASD2 & 3 is the same oddity with real disabilities attached [i.e. severe co-morbids].
The oddity is not a disability in the sense that severe co-morbids are, but it IS disruptive.
(Gifteds, without autism, have a similar disruptive oddity about them.)
That oddity, alone, can be jarring enough that we are marginalized (and all of the problems that go with that).

I agree with that and I hate the way they've taken away severity/functioning labels and just call autism one thing.
I know the argument is "everyone is different" and "some autistics can be high-functioning until they have a meltdown then they become low-functioning, so where are they on the spectrum?" but there are literally some autistics who ARE one or the other extreme in their day to day functioning.
Also people on the spectrum who are mild/high-functioning (Asperger's/PDD-NOS) don't have the speech delays as toddlers and are verbal and articulate as children. And that does make sense.

I would use a math theory, like mean, median and mode, to explain how a person's autism case can result in high, moderate or low-functioning as a general overall, but I can't do math so I'll leave that down to others to work out.