[-jimi-]

Something weird I notice in the aspie community and outside it, when someone thinks they might have aspergers/autism they oftentimes get met with the argument, why do you need a diagnosis, isn't it better that you just go on with your life? That labels are bad and you actually don't need a label for autism, that that label is actually harmful.

With any other diagnosis represented on this forum, would you say the same thing? It is better that you don't know you have depression, anxiety, dissociation, PTSD, bipolar etc? In most cases people would be shocked if I suggested it is better never to have a label with these things. But with autism... it is different.

Why IS this? It sounds really ridiculous. I understand the aspie community is afraid of being watered down with people with just mild autistic traits, even if the most verbal people within it, usually are pretty mild themselves. But the rest of the world, how the heck do they think? Do they think we GET autism if we get diagnosed? That we will just be lazy and terrible and abuse our label when we just need to straighten up and snap out of it?

What is the deal? Please explain.

[TheStrange]

Good question..I have been wondering about these things myself too, in fact I said pretty much the same thing to myself, which is why it took me a long time to take the step to even ask for testing to be done.

Maybe some people actually think a label simply is some kind of 'bad' excuse. Especially if you wouldn't really see anything about a person that strikes as being odd, or they be like, oh well everyone has some 'weird' traits, or like isn't everyone a little autistic, or they have this image of extremely low functioning people and your 'case' wouldn't be bad enough... Also if you are functioning well, despite thinking or knowing you might be autistic/have autism (whichever one prefers) a label can be stigmatizing in some way.

Personally I think if you really need help in understanding yourself and learning to deal with it, a label is like a tool to reach that, or at least understand why things don't work out despite trying very hard. About abusing labels, I have this very strong sense of needing to do everything everyone else does, that's despite having both autism and a metabolic disease label, so I try even harder instead, which often leads me to becoming severely overwhelmed. I like to one day be able to just accept I need to let go of pushing myself too much and don't feel so ashamed when things don't work out.

[BrowseAfterMidnight]

I think it's because for a high-functioning adult (my perspective), getting a diagnosis won't get them any help (or very minimal help), so people don't see the point in getting a diagnosis. What they then don't understand is that having a diagnosis allows one to understand and accept themselves.

Another prominent reason is that people think the label will prohibit you from getting a job. I think this is just a myth because no one requires you to disclose your diagnosis for the vast majority of jobs.

[PsychoPhil]

However, a high functioning adult can equally not expect much help (from the public system) for other diagnoses, such as personality disorders, especially not if the issue cannot be remedied by medication. And still people seem to be more inclined to dismiss an autism diagnosis as useless than other conditions around the way the brain works.

I think this has to do with confusion about diagnostic terms. For instance, I told a relative who is an elementary school teacher about my suspicion of being on the autism spectrum. Her instant reply this couldn't be the case for me because I'm not severely disabled.

Never mind Einstein had Asperger's.

I would have thought teachers for young children in Germany had some training these days to recognize the condition, even if relatively mild, for specialist referrals. But no, the presence of the word spectrum in ASD completely eluded her. Same for a German social worker friend. My theory why autism assessments are deemed useless for (high functioning) adults there's a common misbelief the only purpose of them was to claim disability benefits. I find this totally illogical. I have been plagued with social and mental issues all my life, ostracized and fired from jobs, and if indeed I am on the spectrum frequently beaten by my parents for being invisibly handicapped. Most people would consider it helpful for someone with a long history of crippling back pain to get diagnosed, even if the condition is unlikely to warrant disability benefits. Both back pain and autism are invisibe, yet perceived very differently, probably because people know physical pain can well be unbearable, whereas those with issues related to brain function are supposed to just get over it or worse, labelled psychopaths.

In short, it appears opinions on the value of autism assessments are largely based on ignorance.

[Talthybius]

How is high-functioning Asperger's the same as a depression?

And yes, in a sense you literally get a mental disorder the moment you get diagnosed with it. They are just human made up boxes of symptoms that seem to be a pattern. Two people that both share a mental disorder may share nothing in terms of pathology. We just don't understand the brain. Let alone the personalities the brain is capable to project.

So in the same sense Einstein could have never had Asperger's. Einstein died in 1955. Aspergers was officially recognized as a disorder in 1994. And it was eliminated in 2013 (at least under the DSM-5).

I am not against the idea of diagnosing disorders. The advantage is that you have some idea about what treatment will be effective based on people with the same symptoms. So you hope that all people with the same diagnosis benefit from exactly the same treatment.

[eskielover]

It is so important to get a DX, especially for older people who grew up before ASD was even known about. I can see where if my ex had the correct DX, he would get the help he needs

[yagr]

Originally Posted by Talthybius

How is high-functioning Asperger's the same as a depression?

I simply can't find this in the thread and there's no way for me to tell whose post you were directing this to. Can you help?

Originally Posted by Talthybius

And yes, in a sense you literally get a mental disorder the moment you get diagnosed with it. They are just human made up boxes of symptoms that seem to be a pattern. Two people that both share a mental disorder may share nothing in terms of pathology. We just don't understand the brain. Let alone the personalities the brain is capable to project.

So in the same sense Einstein could have never had Asperger's. Einstein died in 1955. Aspergers was officially recognized as a disorder in 1994. And it was eliminated in 2013 (at least under the DSM-5).

This is a way to look at it, but I have to stretch to see it. Da Vinci had an extraordinarily large corpus callosum, but since we didn't recognize the corpus callosum at the time he was alive...then he didn't? Is that the same thing?

Originally Posted by Talthybius

I am not against the idea of diagnosing disorders. The advantage is that you have some idea about what treatment will be effective based on people with the same symptoms. So you hope that all people with the same diagnosis benefit from exactly the same treatment.

Agreed.

[eskielover]

So you hope that all people with the same diagnosis benefit from exactly the same treatment.

No, actually because ASD is a spectrum disorder I hope treatment is individualized for the specific individuals needs.

[PsychoPhil]

Originally Posted by eskielover

It is so important to get a DX, especially for older people who grew up before ASD was even known about. I can see where if my ex had the correct DX, he would get the help he needs

Thanks for saying this. No matter what little time older persons may have left to live, it's all they have and spending it less miserably still makes all the difference to them. Or me. Something has been causing me issues all my life, and I'd finally like to know what. Even if any diagnosis will just be a human made up and inherently imperfect box of symptoms.

[Talthybius]

Originally Posted by yagr

I simply can't find this in the thread and there's no way for me to tell whose post you were directing this to. Can you help?

The OP thinks Aspergers should be treated the same as any other mental disorder.

This is a way to look at it, but I have to stretch to see it. Da Vinci had an extraordinarily large corpus callosum, but since we didn't recognize the corpus callosum at the time he was alive...then he didn't? Is that the same thing?

How? People have the brains they have. They have the neurology they have. They have the personality they have. There is no dispute there. But think about how many degrees of freedom there are in the human brain. Take all neurons and all possible connections. No brain is exactly the same. As a very small difference in brain structure can have big effects in what kind of mind the brain produces.
So in that sense, a brain isn't the same as a muscle or a bone. Yes, muscles or bones or the heart, they are also not all completely identical. But small differences in general do not matter. We have absolutely no good idea about how the brain works. So a mental health diagnosis says nothing about what is happening in the brain. Only what kind of behavior a person exhibits. The way we define mental disorders is completely arbitrary You can take all symptoms in the DSM-5, shuffle them around randomly, and you can start diagnosing people that way. And for sure, there will be positive diagnosis. Yes, maybe there will be less diagnosis, as the symptoms we link together are indeed correlated and occur more commonly.

Professionals try the best they can. So that is why they have diagnosis. But we have no idea if something like BPD actually exists, is completely made up, or somewhere in between.

Until a genetic or neurological aspects enters a diagnosis, it is completely a human invention. What is needed for an actual disease is to be able to scan someone's brain. And people with Aspergers should have some brain structure that is with few exceptions only found in people with Aspergers. And likely the same will be true for a genetic component.

Now, we are moving towards this now. But we aren't quite there yet.

All this by the way doesn't mean the problems people experience aren't real. They are very real. But the question is if there is a neurological pathology. And if this is something shared by many people.

I suspect that the pathology of mental illnesses can be so diverse and complex, you there is no point in giving the same person the same diagnosis.

[Talthybius]

Originally Posted by PsychoPhil

Thanks for saying this. No matter what little time older persons may have left to live, it's all they have and spending it less miserably still makes all the difference to them. Or me. Something has been causing me issues all my life, and I'd finally like to know what. Even if any diagnosis will just be a human made up and inherently imperfect box of symptoms.

I do not get this argument.

How does having a diagnosis make your life better? You say that even made up incorrect diagnosis are helpful?

I would say that even if we know 100% what a diagnosis is, in the case of mental health, it may still be better not to give a patient a diagnosis. A diagnosis can hugely damage the self-image of a person. I see here also often people who claim they have the wrong diagnosis and experience all kinds of stress about that. So how do people not think it can be dangerous, even for professionals, to come up with a label, act like it is an actual pathology, and stick it on a patient?

If your personality is causing you issues, it is you, the personality. It is not some third agent. Maybe that is something people like about a diagnosis? They can blame the diagnosis when something goes wrong, not themselves. Now, they may not have to blame themselves in the first place.

So why get a diagnosis when you are old, when we know there is no scientific or even medial objective way to determine a diagnosis? Why make something up and burden the patient with it if we have absolutely no good reason to believe it is actually based in reality, or that it will benefit the patient?

[ThunderGoddess]

Having a diagnosis helps you find a treatment and the right treatment helps you live a happier healthier life. People who go undiagnosed suffer silently. In my opinion, a person doesn't go to a doctor just get a label they are going because they feel something isn't right in their life and they are seeking help to end their suffering.

[Talthybius]

How does it help treatment? The only treatment for Asperger syndrome is treating the symptoms. So what does the diagnosis add? You need to know the symptoms to do the treatment.

How do you have to suffer silently without a diagnosis? Not all people that would be diagnosed with Aspergers are suffering. And how do you have to suffer in silent without a diagnosis, but not with one?


I find it strange people make all these claims and seem to think there isn't even a need for a argument. It really gives me the feeling people didn't even think this through themselves.

[ThunderGoddess]

Originally Posted by Talthybius

How does it help treatment? The only treatment for Asperger syndrome is treating the symptoms. So what does the diagnosis add? You need to know the symptoms to do the treatment.

How do you have to suffer silently without a diagnosis? Not all people that would be diagnosed with Aspergers are suffering. And how do you have to suffer in silent without a diagnosis, but not with one?


I find it strange people make all these claims and seem to think there isn't even a need for a argument. It really gives me the feeling people didn't even think this through themselves.

I think you answered your own question.

[Talthybius]

That's absurd.

[yagr]

Originally Posted by Talthybius

How does it help treatment? The only treatment for Asperger syndrome is treating the symptoms. So what does the diagnosis add? You need to know the symptoms to do the treatment.

For the entirety of my childhood and a good portion of my adulthood I was a g*d d*mn, worthless idiot, with no common sense who can't do anything and had a host of behavioral issues that were easily explained with a diagnosis. You wouldn't ask a one armed man to use both hands when trying to lift something and then get mad at him when he used the only hand he had, but that's effectively what happens to someone without a diagnosis. That does significant damage to ones self-esteem. Getting a diagnosis made much of my early life understandable to me and gave me the confidence to address challenges that I had simply avoided, and the knowledge - by seeing what tools others with my diagnosis used to accomplish those challenges, of how to succeed without having to re-invent the wheel.

Treating symptoms without understanding the underlying causes of those symptoms can be unproductive at best and dangerous at worst. I would go in to sensory overload as a child and my mothers solution was to bombard with more sensory overload to desensitize me. What she did instead was to exacerbate an existing dissociative disorder. As an adult who plans on returning to college (hopefully in the Fall), I can ask for a reasonable accommodation with a diagnosis that I wouldn't be able to get without one. The university that I plan on attending has a autism support group made up of students. With a diagnosis, I can make use of that resource - without it, I am without a helpful resource.

Originally Posted by Talthybius

How do you have to suffer silently without a diagnosis? Not all people that would be diagnosed with Aspergers are suffering. And how do you have to suffer in silent without a diagnosis, but not with one?

Though much of the answer to these questions I answered above, but I have discovered things that I have had trouble with that I didn't even realize before the diagnosis - much the same way that people with dyslexia didn't realize that everyone didn't struggle like them. I've struggled with things that there was an easy solution for, but I didn't even know to look. I wasted a lot of time, and suffered a great deal of frustration and self-recrimination because I tried to do things the way others did, tried to think about things the way they did, etc. Understanding how I think and experience the world differently has allowed me to make adjustments accordingly.

For instance, I struggle with any change in routine due to my placement on the spectrum. There are others who struggle with a change in routine, but for entirely different reasons. As a result, the ways of minimizing our struggles are often different.

[Talthybius]

But having only one arm is a symptom. It doesn't explain why the person only has one arm.

You say that the diagnosis easily explains behavioral issues. But how? You have the diagnosis because of behavior.

I do understand the point about using tools that others with the same diagnosis can help. That is what I pointed out myself. It seems to be the only valid argument that I have ever heard. But it still isn't a given that what works for one person will also work for another just because they have the same diagnosis.

I don't really see how the example of your mother is an example of someone treating the underlying symptoms without understanding the cause. A diagnosis of Aspergers or autism doesn't say anything about if trying to desensitize someone is valid or not.

The one about the bureaucracy of requiring a diagnosis to get additional help, that is also the result of having diagnosis in the first place.

[eskielover]

You wouldn't ask a one armed man to use both hands when trying to lift something and then get mad at him when he used the only hand he had, but that's effectively what happens to someone without a diagnosis

This is actually very true....without the diagnosis a person is EXPECTED to behave in a neurotypical way & if they don't they are looked at as an incapable idiot that can't even take care of themselves & people say...."you have a high IQ....what in the world is wrong with you....you have NO common sense."

I lived for 33 years with a H like this & without understanding that there was something that was really causing those problem behaviors for running a household it just caused fights rather than understanding. Most if those years were before Aspergers was even diagnosed & I'm not saying I would have wanted to live like that rven if I knew BUT at least I would have known what I was dealing with & not just thought he was being a total jerk.

I left & needed good therapy to recover from all those years of not understanding what I had been going through. With good therapy & tons of research all the behaviors fit into the ASD descriptions. I urged him to get a DX because his inability to be able to financislly care for himself became more obvious after I left. Sadly he refused & will end up homeless after the foreclosure on the house is final...he refused to get the help I tried to get him & they said eithout a diagnosis if he is able to make decisions it is his problem whether they are bad.

A diagnosis is important especially when it comes to relationships. The other person has a right to know what they are dealing with.

[yagr]

Originally Posted by Talthybius

You say that the diagnosis easily explains behavioral issues. But how? You have the diagnosis because of behavior.

Shutting down because of being over-stimulated is not the willful act of a disobedient child who is choosing to ignore their parents. Without the diagnosis, I continued to get screamed at, berated, beat, etc. With the diagnosis, perhaps there might have been understanding and patience.

Originally Posted by Talthybius

I do understand the point about using tools that others with the same diagnosis can help. That is what I pointed out myself. It seems to be the only valid argument that I have ever heard. But it still isn't a given that what works for one person will also work for another just because they have the same diagnosis.

Correct, but it's a good place to start. Even if it doesn't work, a diagnosis rules out certain 'solutions' avoiding wasting time at best, and traumatizing a person at worst.

Originally Posted by Talthybius

The one about the bureaucracy of requiring a diagnosis to get additional help, that is also the result of having diagnosis in the first place.

Yes it is, which is one reason having a diagnosis is helpful.

Let's step away from autism for a moment to give you another example from my life. I have dissociative identity disorder. My therapist is an EMDR specialist. Without a diagnosis of DID, she would have gone right ahead and done EMDR with me. Problem is, EMDR can be dangerous for people with DID. It can be done, but additional protocols need to be implemented before it can be done safely. Had I not been diagnosed, I could have been harmed by the 'solution' to my behaviors.