"Diagnosis" vs. "evaluation","recognition","identification"
Page 1 of 1 [ 7 posts ]
19 Nov 2018, 10:06 pm
Given the recent arguments over "self-diagnosis" in the threads Have You Ever Changed Your Stance on Self-Diagnosis? and To those who take issue with self-diagnosis, I wonder if we might be able to cut down on these arguments by:
1. Replacing the word "diagnosis" (in the sense of professional diagnosis only) with the word "evaluation" (a synonym I think is more accurate for reasons I'll explain later).
2. Replacing the term "self-diagnosis" with the term "self-recognition" or "self-identification". The word "recognition" could also be applied to informal observations about people we know and from whom we get an autistic-like vibe.
3. Reserving the word "autistic" (by itself) for the outcome of formal evaluation, but agreeing that any well-informed person can "recognize" either oneself or other people as being at least "autistic-like."
4. Agreeing that, while formal evaluation is necessary for psychotherapeutic and various bureaucratic purposes, there are many other, more informal purposes for which formal evaluation is NOT necessary, and which are much better served by being inclusive of ALL "autistic-like" people -- and, most importantly, ***NOT*** just on a temporary, until-you-get-diagnosed basis.
First, some problems with the very word "diagnosis" itself:
Here, in the thread To those who take issue with self-diagnosis:
Pieplup wrote:
I said this in another thread about self-diagnosis, But I believe self-diagnosis is just a step towards diagnosis nothing more nothing less. And ofc it's not valid. I mean i can self-diagnose myself with cancer doesn't mean i have cancer
Autism is not like cancer.
As others have pointed out, autism is not a disease. The word "diagnosis" is associated with disease, and has some other problems as well:
You really do need a doctor to determine whether someone has cancer. On the other hand, just about anyone can "diagnose" another person, or oneself, as having pimples or freckles, or as being unusually tall or unusually short. Of course, in the latter case, the word "diagnose" isn't really quite appropriate, either.
The definition of "autism spectrum disorder" is all about behaviors. These behaviors, it seems to me, can be recognized by anyone who knows you well enough and who is also well-read on the topic of autism.
The only remaining questions, which actually do require a professional to decide, are: (1) whether you have some combination of those behaviors to a sufficient DEGREE to meet certain arbitrary, necessarily fuzzy thresholds that have been set by the psychotherapeutic establishment (and which have gotten changed from one decade to the next, so they have no absolute, fixed meaning), (2) whether you are deemed to be sufficiently disabled by your traits, again according to arbitrary thresholds set by the psychotherapeutic establishment, and (3) whether your particular constellation of traits better fits some other, equally arbitrary and fuzzy category (such as "schizotypal personality disorder").
In short, autism "diagnosis" is all about an attempt to quantify, as objectively as possible, both behaviors/traits and disability. None of these things really ARE objectively quantifiable (see the thread Autism spectrum has no clear cut-off point, research news), but the attempt to do so is necessary for various bureaucratic purposes, such as getting insurance to pay for psychotherapy or determining what kind of special education services a child is eligible for.
The word "evaluation" avoids some of the mystical medical mystique associated with the word "diagnosis." The point of "evaluation" is simply an attempt to quantify, primarily for bureaucratic purposes.
I am too old to benefit from very many, if any, of these bureaucratic purposes.
What I want is to do what I can to help build an autistic-friendly subculture in which both I and my boyfriend (who was formally evaluated in 2001 as having what was then called Asperger's syndrome) can thrive. I need this subculture to be inclusive of me regardless of the outcome of formal evaluation (for which I am currently on a waiting list). I know what my traits are, and I know what my needs are. Even if it turns out that my traits don't QUITE meet whatever is currently deemed to be the threshold for ASD, I still would GREATLY benefit by being part of a subculture in which my traits are welcome and accepted. So I need it to be a subculture for "autistic, autistic-like, and autistic-friendly" people, not just for "autistic" people.
Note: By "autistic-like," I do NOT mean "Broad Autism Phenotype," a much larger category. By an "autistic-like" person, I mean someone who fits an informed layperson's idea of someone who is probably autistic. Such a person could almost certainly benefit by being part of an autistic-friendly subculture, regardless of the outcome of any official evaluation.
I also have an on-and-off interest in civil rights activism. I believe that the autistic rights movement needs to concern itself with the rights of not just those who have been formally evaluated, but also everyone who has obvious autistic-like traits or who recognizes oneself as being significantly autistic-like. ASAN agrees with me on this:
Quote:
Autistic Identity
In addition, we use the term Autistic Community to refer inclusively to people who have been identified by professionals as being on the autism spectrum and to those who are self-identified. We recognize that there are many reasons why a person may fall into one group or the other, and we respect the right of individuals in our community to make their own choices in this regard. Many Autistics were given a diagnostic label in childhood or sought a formal diagnosis in adulthood to obtain services and accommodations. Others have not done so for reasons that include financial barriers, lack of qualified professionals in a locality, obtaining sufficient accommodations on an informal basis, or the political view that our community should not have professionals as its gatekeepers. ASAN believes that all of us can and should work together in solidarity to accomplish our common goals.
In addition, we use the term Autistic Community to refer inclusively to people who have been identified by professionals as being on the autism spectrum and to those who are self-identified. We recognize that there are many reasons why a person may fall into one group or the other, and we respect the right of individuals in our community to make their own choices in this regard. Many Autistics were given a diagnostic label in childhood or sought a formal diagnosis in adulthood to obtain services and accommodations. Others have not done so for reasons that include financial barriers, lack of qualified professionals in a locality, obtaining sufficient accommodations on an informal basis, or the political view that our community should not have professionals as its gatekeepers. ASAN believes that all of us can and should work together in solidarity to accomplish our common goals.
Note that ASAN uses the word "identification" to refer to both evaluation (a.k.a. professional "diagnosis") and self-recognition (a.k.a. "self-diagnosis"). I think "identification" is another appropriate synonym in both cases.
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Last edited by Mona Pereth on 19 Nov 2018, 10:32 pm, edited 1 time in total.
19 Nov 2018, 10:31 pm
I use "self discovery" with people on their journey, because it feels to me to describe a dynamic rather than a binary "yes/no" process. Most people continually accrue greater self knowledge as they get older - a small minority perhaps don't, and stay stuck in a self-perception formed at any early age. But most do start to live to a greater or lesser degree "the examined life" and reflect upon patterns, potentials, challenges, confusions and gradually unfold answers as well as the "aha" moments.
I discovered the existence of my AS self quite some time before the "professionals" did.
ASPartOfMe
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Joined: 25 Aug 2013
Age: 67
Gender: Male
Posts: 36,372
Location: Long Island, New York
20 Nov 2018, 4:49 am
I do not think WP should be setting rules about how members describe themselves
There are members who have not been assessed by a proffessional and they describe themselves as autistic or aspie not autistic like. Others say they self identify. Who are we who have not lived their lives to tell them nope don’t describe yourself as autistic.
Self diagnosis has become a fairly well recognized description.
There are people who experience autism as a disability to a curse who are we to tell them it is not?
Autistic and self diagnosed how a lot of stigmas and negative connotations with them so it is understandable to want to replace it. There is another approach called reappropriation. We are of a similar age. I remember when freak was a pejorative used to describe hippies. The hippies started calling themselves freaks as a point of pride. Now “fly your freak flag” is viewed as a prideful statement of individuality. Autstic is not there yet but for over 10 years there are a bunch of people using it in a non negative manor to describe themselves. Be it changing autistic or self diagnosed into a positive or renaming them is something that has to happen organinicaly.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
“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
20 Nov 2018, 6:10 am
Mona Pereth wrote:
Pieplup wrote:
I said this in another thread about self-diagnosis, But I believe self-diagnosis is just a step towards diagnosis nothing more nothing less. And ofc it's not valid. I mean i can self-diagnose myself with cancer doesn't mean i have cancer
Autism is not like cancer.
As others have pointed out, autism is not a disease. The word "diagnosis" is associated with disease, and has some other problems as well:
You really do need a doctor to determine whether someone has cancer. On the other hand, just about anyone can "diagnose" another person, or oneself, as having pimples or freckles, or as being unusually tall or unusually short. Of course, in the latter case, the word "diagnose" isn't really quite appropriate, either.
I think this is where things can get tricky. My mom had skin cancer when I was a kid. She caught this, and only after pestering her doctor did he see that she had it. Initially, he said she was fine. There is an attitude with some here that no doctors or specialists make mistakes, but that's not the case. There are many here who also report years of misdiagnosis.
20 Nov 2018, 9:12 am
I'll add this to the thread just to avoid any more ambiguous and subjective definitions.
diagnosis:
1a. The art or act of identifying a disease from its signs and symptoms.
1b. The decision reached by diagnosis.
2a. Investigation or analysis of the cause or nature of a condition, situation, or problem.
2b. A statement or conclusion from such an analysis.
evaluation:
1. The act or result of evaluating.
2. Determination of the value, nature, character, or quality of something or someone.
identification:
1a. An act of identifying / the state of being identified.
1b. Evidence of identity.
2a. Psychological orientation of the self in regard to something (such as a person or group) with a resulting feeling of close emotional association.
2b. A largely unconscious process whereby an individual models thoughts, feelings, and actions after those attributed to an object that has been incorporated as a mental image.
recognition:
1. The action of recognizing : the state of being recognized: such as: (a) acknowledgment (syn): especially a formal acknowledgment of the political existence of a government or nation; (b) knowledge or feeling that someone or something present has been encountered before.
2. Special notice or attention.
Source: The Merriam-Webster Dictionary & Thesaurus
20 Nov 2018, 11:06 am
Mona Pereth wrote:
Given the recent arguments over "self-diagnosis" in the threads Have You Ever Changed Your Stance on Self-Diagnosis? and To those who take issue with self-diagnosis, I wonder if we might be able to cut down on these arguments by:
1. Replacing the word "diagnosis" (in the sense of professional diagnosis only) with the word "evaluation" (a synonym I think is more accurate for reasons I'll explain later).
2. Replacing the term "self-diagnosis" with the term "self-recognition" or "self-identification". The word "recognition" could also be applied to informal observations about people we know and from whom we get an autistic-like vibe.
3. Reserving the word "autistic" (by itself) for the outcome of formal evaluation, but agreeing that any well-informed person can "recognize" either oneself or other people as being at least "autistic-like."
4. Agreeing that, while formal evaluation is necessary for psychotherapeutic and various bureaucratic purposes, there are many other, more informal purposes for which formal evaluation is NOT necessary, and which are much better served by being inclusive of ALL "autistic-like" people -- and, most importantly, ***NOT*** just on a temporary, until-you-get-diagnosed basis.
First, some problems with the very word "diagnosis" itself:
Here, in the thread To those who take issue with self-diagnosis:
Autism is not like cancer.
As others have pointed out, autism is not a disease. The word "diagnosis" is associated with disease, and has some other problems as well:
You really do need a doctor to determine whether someone has cancer. On the other hand, just about anyone can "diagnose" another person, or oneself, as having pimples or freckles, or as being unusually tall or unusually short. Of course, in the latter case, the word "diagnose" isn't really quite appropriate, either.
The definition of "autism spectrum disorder" is all about behaviors. These behaviors, it seems to me, can be recognized by anyone who knows you well enough and who is also well-read on the topic of autism.
The only remaining questions, which actually do require a professional to decide, are: (1) whether you have some combination of those behaviors to a sufficient DEGREE to meet certain arbitrary, necessarily fuzzy thresholds that have been set by the psychotherapeutic establishment (and which have gotten changed from one decade to the next, so they have no absolute, fixed meaning), (2) whether you are deemed to be sufficiently disabled by your traits, again according to arbitrary thresholds set by the psychotherapeutic establishment, and (3) whether your particular constellation of traits better fits some other, equally arbitrary and fuzzy category (such as "schizotypal personality disorder").
In short, autism "diagnosis" is all about an attempt to quantify, as objectively as possible, both behaviors/traits and disability. None of these things really ARE objectively quantifiable (see the thread Autism spectrum has no clear cut-off point, research news), but the attempt to do so is necessary for various bureaucratic purposes, such as getting insurance to pay for psychotherapy or determining what kind of special education services a child is eligible for.
The word "evaluation" avoids some of the mystical medical mystique associated with the word "diagnosis." The point of "evaluation" is simply an attempt to quantify, primarily for bureaucratic purposes.
I am too old to benefit from very many, if any, of these bureaucratic purposes.
What I want is to do what I can to help build an autistic-friendly subculture in which both I and my boyfriend (who was formally evaluated in 2001 as having what was then called Asperger's syndrome) can thrive. I need this subculture to be inclusive of me regardless of the outcome of formal evaluation (for which I am currently on a waiting list). I know what my traits are, and I know what my needs are. Even if it turns out that my traits don't QUITE meet whatever is currently deemed to be the threshold for ASD, I still would GREATLY benefit by being part of a subculture in which my traits are welcome and accepted. So I need it to be a subculture for "autistic, autistic-like, and autistic-friendly" people, not just for "autistic" people.
Note: By "autistic-like," I do NOT mean "Broad Autism Phenotype," a much larger category. By an "autistic-like" person, I mean someone who fits an informed layperson's idea of someone who is probably autistic. Such a person could almost certainly benefit by being part of an autistic-friendly subculture, regardless of the outcome of any official evaluation.
I also have an on-and-off interest in civil rights activism. I believe that the autistic rights movement needs to concern itself with the rights of not just those who have been formally evaluated, but also everyone who has obvious autistic-like traits or who recognizes oneself as being significantly autistic-like. ASAN agrees with me on this:
Note that ASAN uses the word "identification" to refer to both evaluation (a.k.a. professional "diagnosis") and self-recognition (a.k.a. "self-diagnosis"). I think "identification" is another appropriate synonym in both cases.
1. Replacing the word "diagnosis" (in the sense of professional diagnosis only) with the word "evaluation" (a synonym I think is more accurate for reasons I'll explain later).
2. Replacing the term "self-diagnosis" with the term "self-recognition" or "self-identification". The word "recognition" could also be applied to informal observations about people we know and from whom we get an autistic-like vibe.
3. Reserving the word "autistic" (by itself) for the outcome of formal evaluation, but agreeing that any well-informed person can "recognize" either oneself or other people as being at least "autistic-like."
4. Agreeing that, while formal evaluation is necessary for psychotherapeutic and various bureaucratic purposes, there are many other, more informal purposes for which formal evaluation is NOT necessary, and which are much better served by being inclusive of ALL "autistic-like" people -- and, most importantly, ***NOT*** just on a temporary, until-you-get-diagnosed basis.
First, some problems with the very word "diagnosis" itself:
Here, in the thread To those who take issue with self-diagnosis:
Pieplup wrote:
I said this in another thread about self-diagnosis, But I believe self-diagnosis is just a step towards diagnosis nothing more nothing less. And ofc it's not valid. I mean i can self-diagnose myself with cancer doesn't mean i have cancer
Autism is not like cancer.
As others have pointed out, autism is not a disease. The word "diagnosis" is associated with disease, and has some other problems as well:
You really do need a doctor to determine whether someone has cancer. On the other hand, just about anyone can "diagnose" another person, or oneself, as having pimples or freckles, or as being unusually tall or unusually short. Of course, in the latter case, the word "diagnose" isn't really quite appropriate, either.
The definition of "autism spectrum disorder" is all about behaviors. These behaviors, it seems to me, can be recognized by anyone who knows you well enough and who is also well-read on the topic of autism.
The only remaining questions, which actually do require a professional to decide, are: (1) whether you have some combination of those behaviors to a sufficient DEGREE to meet certain arbitrary, necessarily fuzzy thresholds that have been set by the psychotherapeutic establishment (and which have gotten changed from one decade to the next, so they have no absolute, fixed meaning), (2) whether you are deemed to be sufficiently disabled by your traits, again according to arbitrary thresholds set by the psychotherapeutic establishment, and (3) whether your particular constellation of traits better fits some other, equally arbitrary and fuzzy category (such as "schizotypal personality disorder").
In short, autism "diagnosis" is all about an attempt to quantify, as objectively as possible, both behaviors/traits and disability. None of these things really ARE objectively quantifiable (see the thread Autism spectrum has no clear cut-off point, research news), but the attempt to do so is necessary for various bureaucratic purposes, such as getting insurance to pay for psychotherapy or determining what kind of special education services a child is eligible for.
The word "evaluation" avoids some of the mystical medical mystique associated with the word "diagnosis." The point of "evaluation" is simply an attempt to quantify, primarily for bureaucratic purposes.
I am too old to benefit from very many, if any, of these bureaucratic purposes.
What I want is to do what I can to help build an autistic-friendly subculture in which both I and my boyfriend (who was formally evaluated in 2001 as having what was then called Asperger's syndrome) can thrive. I need this subculture to be inclusive of me regardless of the outcome of formal evaluation (for which I am currently on a waiting list). I know what my traits are, and I know what my needs are. Even if it turns out that my traits don't QUITE meet whatever is currently deemed to be the threshold for ASD, I still would GREATLY benefit by being part of a subculture in which my traits are welcome and accepted. So I need it to be a subculture for "autistic, autistic-like, and autistic-friendly" people, not just for "autistic" people.
Note: By "autistic-like," I do NOT mean "Broad Autism Phenotype," a much larger category. By an "autistic-like" person, I mean someone who fits an informed layperson's idea of someone who is probably autistic. Such a person could almost certainly benefit by being part of an autistic-friendly subculture, regardless of the outcome of any official evaluation.
I also have an on-and-off interest in civil rights activism. I believe that the autistic rights movement needs to concern itself with the rights of not just those who have been formally evaluated, but also everyone who has obvious autistic-like traits or who recognizes oneself as being significantly autistic-like. ASAN agrees with me on this:
Quote:
Autistic Identity
In addition, we use the term Autistic Community to refer inclusively to people who have been identified by professionals as being on the autism spectrum and to those who are self-identified. We recognize that there are many reasons why a person may fall into one group or the other, and we respect the right of individuals in our community to make their own choices in this regard. Many Autistics were given a diagnostic label in childhood or sought a formal diagnosis in adulthood to obtain services and accommodations. Others have not done so for reasons that include financial barriers, lack of qualified professionals in a locality, obtaining sufficient accommodations on an informal basis, or the political view that our community should not have professionals as its gatekeepers. ASAN believes that all of us can and should work together in solidarity to accomplish our common goals.
In addition, we use the term Autistic Community to refer inclusively to people who have been identified by professionals as being on the autism spectrum and to those who are self-identified. We recognize that there are many reasons why a person may fall into one group or the other, and we respect the right of individuals in our community to make their own choices in this regard. Many Autistics were given a diagnostic label in childhood or sought a formal diagnosis in adulthood to obtain services and accommodations. Others have not done so for reasons that include financial barriers, lack of qualified professionals in a locality, obtaining sufficient accommodations on an informal basis, or the political view that our community should not have professionals as its gatekeepers. ASAN believes that all of us can and should work together in solidarity to accomplish our common goals.
Note that ASAN uses the word "identification" to refer to both evaluation (a.k.a. professional "diagnosis") and self-recognition (a.k.a. "self-diagnosis"). I think "identification" is another appropriate synonym in both cases.
I feel like this is kinda unnecessary. I mean some people just like to argue let them argue and "Autistic-like" is way way to ambigous.
I mean
1. "Replacing the word "diagnosis" (in the sense of professional diagnosis only) with the word "evaluation" (a synonym I think is more accurate for reasons I'll explain later)"
- Really what is the point in this. A Diagnosis isn't an evaluation its' a doctor saying you have something and while it doesn't mean you definitely have it it means you legally have it. You can get Evaluated and not get diagnosed which therefore makes this really confusing and causes more problems. And Your right you don't need a doctor to determine if you have cancer but People are affected by bias. Which is why its better to have a doctor. I've seen people who think they are autistic who don't seem autistic at all. That's why you need a diagnosis.
"2. Replacing the term "self-diagnosis" with the term "self-recognition" or "self-identification". The word "recognition" could also be applied to informal observations about people we know and from whom we get an autistic-like vibe."
- Yeah this is absolutely pointless PC BS. Why replace terms with other terms that essentially mean the same thing. Completely pointless. Now recognition maybe that. But that really doesn't mean anything and since a lot of people try to hide the fact that there autistic. It makes it even less meaningful.
3. "Reserving the word "autistic" (by itself) for the outcome of formal evaluation, but agreeing that any well-informed person can "recognize" either oneself or other people as being at least "autistic-like.""
- Okay, First off how am i supposed to know where someone is actually diagnosed or are just saying they are. Is WP going to require scans or proof of your medical record. Like what? And second of all Is this going to be a new stat at your profile Where ti shows your diagnosis? Are you going to talk to alex about changing self-diagnosed or whatever its' called to autistic-like? How are you going to go about this?
4. "4. Agreeing that, while formal evaluation is necessary for psychotherapeutic and various bureaucratic purposes, there are many other, more informal purposes for which formal evaluation is NOT necessary, and which are much better served by being inclusive of ALL "autistic-like" people -- and, most importantly, ***NOT*** just on a temporary, until-you-get-diagnosed basis."
- List 5 of these "informal purposes". Okay who is excluding people from doing things cause they don't have an official diagnosis. Like Has wrongplanet became a club where they have to check your medical records for you to get in? I mean last time i checked it isn't. So Where are they excluding you at?
4."In addition, we use the term Autistic Community to refer inclusively to people who have been identified by professionals as being on the autism spectrum and to those who are self-identified." This is not nessicarly true there are people who are diagnosed like my brother who don't interact with people who are on the spectrum (excluding me obviously). And I woudn't consider them to be part of the autistic community. Cause you have to communicate to be part of it. Hence the term community. The problem with identifying as something is you can idenitfy as a unicorn doesn't make you a unicorn.
First of all You can always not get a diagnosis and I've met people who are even more autistic than me who don't have one it's not that big of a deal. It's just you can't expect people not to doubt you without a diagnosis and hell you can't evne not expect people to doubt formal diagnoses.
Your not to old to benefit from bureaucratic resources. You can still get social security or whatever you call it where
you from. You still can get talk therapy psychiatry and other things like that. Sure some therapies become less effective like the ones people normally think of when they think of autism like OT or ABA. But those aren't the only options. And Your entire point of needing to be included is invalidated by handful of NT people who are WP regulars. Those people are included. And While some people don't like them They still are included. anyone can join wrongplanet and post its' just that its' predominatly autistic people for obvious reasons most of them are either parents or family members or people who thought they were autistic but later found out they weren't There is also that person SocOfAutism who is neither but researches autism. You don't need to be either.
_________________
ever changing evolving and growing
I am pieplup i have level 3 autism and a number of severe mental illnesses. I am rarely active on here anymore.
I run a discord for moderate-severely autistic people if anyone would like to join. You can also contact me on discord @Pieplup or by email at [email protected]
20 Nov 2018, 11:11 am
Pieplup wrote:
I said this in another thread about self-diagnosis, But I believe self-diagnosis is just a step towards diagnosis nothing more nothing less. And ofc it's not valid. I mean i can self-diagnose myself with cancer doesn't mean i have cancer.
I'd also like to add When I said I believe self-diagnosis is just a step towards diagnosis i said that for a reason. People find out that they aren't autistic when they get formally evaluated. You can also take tests like the AQ to find out. Though those can be affected by bias obviously. That's another reason why it's important to try to seek a diagnosis. some people may not be able to but They should atleast try a test or too. Maybe even ask people irl to help them figure it out. And onto my other point. I mean i can self-diagnose myself with cancer doesn't mean i have cancer.. This might not be the best point. But Let's just say scizophrenia or some sort of psychosis or something. You can't really truely know if you have that or if it's just a delusion which is why you need a profesional diagnosis.
_________________
ever changing evolving and growing
I am pieplup i have level 3 autism and a number of severe mental illnesses. I am rarely active on here anymore.
I run a discord for moderate-severely autistic people if anyone would like to join. You can also contact me on discord @Pieplup or by email at [email protected]
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