getting a diagnosis made me sad, not what I expected
And I believe the RAADS-R uses the observation of a professional rather than self observation. But correct me if I'm wrong on that.
Yeah, the RAADS-R she had me take on my own. Then I got to her office and she asked me the questions and wouldn't tell me what I had put before. So it's partly professional observation. However, taking it online gave me a really good idea that I could pursue diagnosis and likely get it. The other test mislead me for years that I wasn't quite on the spectrum.
Fair enough. They are very useful in that way, I won't doubt that. Am I also correct in thinking that wasn't all there was to getting diagnosed? I'm not (yet?) diagnosed but they've asked me way more than online tests ever did. Sorry for going off topic.
But anyway, on topic. Undergoing diagnosis has given me mixed feelings too. But the ones where I think "am I really that bad?" it did leave me feeling I guess a bit sad that I wasn't aware I was doing something.
And I believe the RAADS-R uses the observation of a professional rather than self observation. But correct me if I'm wrong on that.
Yeah, the RAADS-R she had me take on my own. Then I got to her office and she asked me the questions and wouldn't tell me what I had put before. So it's partly professional observation. However, taking it online gave me a really good idea that I could pursue diagnosis and likely get it. The other test mislead me for years that I wasn't quite on the spectrum.
Fair enough. They are very useful in that way, I won't doubt that. Am I also correct in thinking that wasn't all there was to getting diagnosed? I'm not (yet?) diagnosed but they've asked me way more than online tests ever did. Sorry for going off topic.
But anyway, on topic. Undergoing diagnosis has given me mixed feelings too. But the ones where I think "am I really that bad?" it did leave me feeling I guess a bit sad that I wasn't aware I was doing something.
I've read in some places people being given a few tests, and an IQ test as well. I just had to fill out a form with open-ended answers. My mom filled one out too. And then we did the RAADS-R. That was it. We talked about the first one on our first two hour visit. Then we did the RAADS-R at a one hour visit. Then I got my diagnosis at the next visit. It was all so much easier than I've read in various places that it left me doubting. But I am starting to come to terms with it all. I think part of it is just always being taken by surprise by my emotions. If I think something is a logical decision I don't expect to also have emotions about it.
The_Face_of_Boo
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and why this is in the women's section?
Anyway, rude or not, if she's very pro, she would notice signs right away; she probably was dismissive because she really noticed that you aren't aspie from your eye contacts, body language ...etc.
Are you willing to accept the the possibility that you might NOT be an aspie, and that you might be simply a very introvert or socially inept typical person? I have seen threads of people who try too hard to get an AS diagnosis, like endlessly going from one doctor to another until one gives them a diagnosis.
Note that AS has been removed the DSM 5 by the same elite DSM psychiatrists who had originally put it in the previous DSM, and they put instead only Autism diagnosis in order to make the diagnosis process more strict and less vague, because these same psychiatrists said in several interviews that the AS had went out of control and it was over-diagnosing every quirky and introvert person.
The_Face_of_Boo
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I took this RAADS-R right now, twice, the second time was with the help of someone who knows me.
And I got a 154.5 score as average.
http://www.aspietests.org/raads/questio ... cale=en_GB
That's weird, because I have no sensory issues at all, no textures bothers me insanely, I don't get frighted by sounds or birthing light, I never closed my ears to regular sounds, I don't have the whole 'sensory overload' thing ; there was certain food made me nauseous when when I was a toddler but who didn't? And yet I scored above the threshold in sensory, it makes no sense.
As if the test is made in away to make any introvert to get a Aspie-level score.
A few reasons: I'm a middle aged woman, women on the spectrum present very differently than men so when talking about getting a diagnosis it makes a difference, and honestly I didn't see any other suitable area to put this. I have seen a lot of diagnosis discussion here, so I felt it was appropriate to the section.
A lack of eye contact is not required in the diagnostic criteria, nor is a certain type of body language. These are cited as examples of something that may be impaired, but it doesn't have to be specifically these things. If someone can diagnose autism just by looking at you, then why did I have to go through hours of evaluation? I am not aware of any diagnostic assessment where the professional just requires you to show up so they can see if you look autistic.
Of course, did you not read my opening post? That is why I posted here because I'm questioning if the diagnosis is accurate. However, I definitely fit the diagnostic criteria from the DSM-5. I did not go from doctor to doctor to try to get a diagnosis! I went to the local autism clinic that deals with adults as well as children and I told them I wanted to see where I was on the spectrum. If I was on the autism side or part of the broader autism phenotype. I have not, or have I ever been, just introverted or socially inept. I also have a lot of sensory issues, some stims, a lot of problems showing emotion, etc. that would line up with autism much better.
Do you have some evidence to back this statement up? I thought that was speculation on why they did it, I didn't know anyone had said that. No matter why they did it, I didn't have any difficulty getting a diagnosis at all under the ASD umbrella.
And I got a 154.5 score as average.
http://www.aspietests.org/raads/questio ... cale=en_GB
That's weird, because I have no sensory issues at all, no textures bothers me insanely, I don't get frighted by sounds or birthing light, I never closed my ears to regular sounds, I don't have the whole 'sensory overload' thing ; there was certain food made me nauseous when when I was a toddler but who didn't? And yet I scored above the threshold in sensory, it makes no sense.
As if the test is made in away to make any introvert to get a Aspie-level score.
Well, remember you are a sample size of one. I don't know who gave you a diagnosis or if it is even valid. If you are doubting this test as accurate I feel you should actually research the test first. It's been studied and validated as a diagnostic tool. It's not a fun quiz, it's meant to be used clinically to assess for autism.
Some facts about this test from here: http://musingsofanaspie.com/2012/12/11/ ... ds-r-test/
- Its validity as a diagnostic instrument was assessed in a 2010 study in which the RAADS-R was administered to 779 people at 9 different clinics in the US, UK and Australia.
- In the 2010 study, the scores for those previously diagnosed with ASD range from 44 to 227. The scores for control group members ranged from 0 to 65. The researchers set a threshold of 65, meaning that a score of 65 or greater “is consistent with a clinical diagnosis of ASD.”
- It’s interesting to note that only 3% of the people with ASD had a score below 65 and 0% of the control group participants had a score of 65 or higher. There is very little overlap between the two groups, unlike the AQ study results.
So if you are trying to say that the RAADS-R isn't a valid assessment tool, I would need some more evidence showing that. Not just, you know, you taking it and getting an autistic score and then telling me that somehow means it won't work for me. Over 700 people took it with very little overlap - NT's scored lower than 65 in every case. I could have scored a 66 and still been diagnosed, yet I scored more than double the allowable score. I think that means I'm on the spectrum, based on the information about this test alone. However I also filled out other forms, and my mom did as well.
ASPartOfMe
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Do you have some evidence to back this statement up? I thought that was speculation on why they did it, I didn't know anyone had said that. No matter why they did it, I didn't have any difficulty getting a diagnosis at all under the ASD umbrella.
Why Claim Asperger's is Overdiagnosed? Psychology Today November 21, 2012
David Kupfer, chair of the task force charged with the DSM revisions, blurted (link is external) to the New York Times in January: “We have to make sure not everybody who is a little odd gets a diagnosis of autism or Asperger Disorder. It involves a use of treatment resources. It becomes a cost issue.” (This was startling to those who’d missed the memo that declared costs and treatment resources the responsibility of the APA. Which was everyone.)
Catherine Lord, the director of the Institute for Brain Development at New York-Presbyterian Hospital, and another member of the workgroup, told (link is external) Scientific American in January, “If the DSM-IV criteria are taken too literally, anybody in the world could qualify for Asperger's or PDD-NOS... We need to make sure the criteria are not pulling in kids who do not have these disorders.”
Paul Steinberg, a D.C. psychiatrist, declared in a New York Times op-ed (link is external) in January that “with the loosening of the diagnosis of Asperger, children and adults who are shy and timid, who have quirky interests like train schedules and baseball statistics, and who have trouble relating to their peers” are erroneously and harmfully labeled autistic. He blamed a 1992 Department of Education directive that “called for enhanced services" for children diagnosed with autism spectrum disorders: “The diagnosis of Asperger syndrome went through the roof."
Dr. Bryna Siegel, a developmental psychologist at the University of California, San Francisco, told a Daily Beast reporter (link is external) in February that she “undiagnoses” nine of out ten students with so-called Asperger’s. Siegel was a member of the panel responsible for the inclusion of Asperger’s in the DSM-IV, which the reporter cited to me in a phone call as evidence of Seigel's objectivity: implicitly, Seigel is critiquing her own work. But that same journalist made no mention in the piece of Dr. Seigel’s history as an expert witness for school districts fending off families’ claims for those “enhanced services,” and the obvious conflict of interest (as well as the selection bias in her client pool) this represents. In October, she told New York magazine (link is external) that she undiagnoses six out of ten. That's quite a shift in eight months. Hope it was evidence-based.
_________________
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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
Do you have some evidence to back this statement up? I thought that was speculation on why they did it, I didn't know anyone had said that. No matter why they did it, I didn't have any difficulty getting a diagnosis at all under the ASD umbrella.
Why Claim Asperger's is Overdiagnosed? Psychology Today November 21, 2012
David Kupfer, chair of the task force charged with the DSM revisions, blurted (link is external) to the New York Times in January: “We have to make sure not everybody who is a little odd gets a diagnosis of autism or Asperger Disorder. It involves a use of treatment resources. It becomes a cost issue.” (This was startling to those who’d missed the memo that declared costs and treatment resources the responsibility of the APA. Which was everyone.)
Catherine Lord, the director of the Institute for Brain Development at New York-Presbyterian Hospital, and another member of the workgroup, told (link is external) Scientific American in January, “If the DSM-IV criteria are taken too literally, anybody in the world could qualify for Asperger's or PDD-NOS... We need to make sure the criteria are not pulling in kids who do not have these disorders.”
Paul Steinberg, a D.C. psychiatrist, declared in a New York Times op-ed (link is external) in January that “with the loosening of the diagnosis of Asperger, children and adults who are shy and timid, who have quirky interests like train schedules and baseball statistics, and who have trouble relating to their peers” are erroneously and harmfully labeled autistic. He blamed a 1992 Department of Education directive that “called for enhanced services" for children diagnosed with autism spectrum disorders: “The diagnosis of Asperger syndrome went through the roof."
Dr. Bryna Siegel, a developmental psychologist at the University of California, San Francisco, told a Daily Beast reporter (link is external) in February that she “undiagnoses” nine of out ten students with so-called Asperger’s. Siegel was a member of the panel responsible for the inclusion of Asperger’s in the DSM-IV, which the reporter cited to me in a phone call as evidence of Seigel's objectivity: implicitly, Seigel is critiquing her own work. But that same journalist made no mention in the piece of Dr. Seigel’s history as an expert witness for school districts fending off families’ claims for those “enhanced services,” and the obvious conflict of interest (as well as the selection bias in her client pool) this represents. In October, she told New York magazine (link is external) that she undiagnoses six out of ten. That's quite a shift in eight months. Hope it was evidence-based.
Wow, that's crazy. I don't think their vision is coming to fruition though, thankfully. I've been told by the actual clinicians who diagnosed my son and then the ones who diagnosed me that they can still diagnose a former Aspie under the new guidelines.
The_Face_of_Boo
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Thank you ASPartOfMe, I did read few sources saying similar stuff, and those are not the only DSM psychiatrists who said such stuff.
Note that a such significant change in DSM requires an almost consensus of the assigned psychiatrists.
jennica, you won't find such news in the "Pro-Aspie" websites/sources because .... I dunno why, but there are radical non-objective and cult-like people within the aspie communities who imagine a NT world conspiracy against aspies and deny anything that isn't for their liking.
ASPartOfMe post's source is Psychologytoday, you should read in such sources for a more objective view.
I am personally not diagnosed, and I am not sure if I have it or not.
Note that a such significant change in DSM requires an almost consensus of the assigned psychiatrists.
jennica, you won't find such news in the "Pro-Aspie" websites/sources because .... I dunno why, but there are radical non-objective and cult-like people within the aspie communities who imagine a NT world conspiracy against aspies and deny anything that isn't for their liking.
ASPartOfMe post's source is Psychologytoday, you should read in such sources for a more objective view.
I am personally not diagnosed, and I am not sure if I have it or not.
I don't understand why you are dwelling on this aspect of my comment to you? I replied to all your points and you are only commenting back on the one thing that was totally irrelevant to the discussion? That makes little sense to me. This change in the DSM didn't affect me. I got a diagnosis just fine. And I call myself an Aspie even though that isn't technically accurate because the spectrum is vast, and I'm carving out my little place on it.
But what about the things you said about me not having autism? You don't even have a diagnosis, what qualifies you to say such things and to call into question the RAADS-R diagnostic tool?
The_Face_of_Boo
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Note that a such significant change in DSM requires an almost consensus of the assigned psychiatrists.
jennica, you won't find such news in the "Pro-Aspie" websites/sources because .... I dunno why, but there are radical non-objective and cult-like people within the aspie communities who imagine a NT world conspiracy against aspies and deny anything that isn't for their liking.
ASPartOfMe post's source is Psychologytoday, you should read in such sources for a more objective view.
I am personally not diagnosed, and I am not sure if I have it or not.
I don't understand why you are dwelling on this aspect of my comment to you? I replied to all your points and you are only commenting back on the one thing that was totally irrelevant to the discussion? That makes little sense to me. This change in the DSM didn't affect me. I got a diagnosis just fine. And I call myself an Aspie even though that isn't technically accurate because the spectrum is vast, and I'm carving out my little place on it.
But what about the things you said about me not having autism? You don't even have a diagnosis, what qualifies you to say such things and to call into question the RAADS-R diagnostic tool?
I have never said that you don't have autism, and I agree with the other user here who said that the RAADS-R alone isn't enough especially if it's taken alone and not within the assessment.
What I've said: You might have it or not, when you go for a ASD diagnosis, you shouldn't expect a 100% certainty that you will be diagnosed as one, there are people who have autistic-like traits (ie. NT siblings of autistic are more likely to be like this) without being eligible for the ASD diagnosis, you should go with the two possibilities (or maybe more) in mind and without hoping for a one single certain outcome.
Note that a such significant change in DSM requires an almost consensus of the assigned psychiatrists.
jennica, you won't find such news in the "Pro-Aspie" websites/sources because .... I dunno why, but there are radical non-objective and cult-like people within the aspie communities who imagine a NT world conspiracy against aspies and deny anything that isn't for their liking.
ASPartOfMe post's source is Psychologytoday, you should read in such sources for a more objective view.
I am personally not diagnosed, and I am not sure if I have it or not.
I don't understand why you are dwelling on this aspect of my comment to you? I replied to all your points and you are only commenting back on the one thing that was totally irrelevant to the discussion? That makes little sense to me. This change in the DSM didn't affect me. I got a diagnosis just fine. And I call myself an Aspie even though that isn't technically accurate because the spectrum is vast, and I'm carving out my little place on it.
But what about the things you said about me not having autism? You don't even have a diagnosis, what qualifies you to say such things and to call into question the RAADS-R diagnostic tool?
I have never said that you don't have autism, and I agree with the other user here who said that the RAADS-R alone isn't enough especially if it's taken alone and not within the assessment.
What I've said: You might have it or not, when you go for a ASD diagnosis, you shouldn't expect a 100% certainty that you will be diagnosed as one, there are people who have autistic-like traits (ie. NT siblings of autistic are more likely to be like this) without being eligible for the ASD diagnosis, you should go with the two possibilities (or maybe more) in mind and without hoping for a one single certain outcome.
First, I was given the RAADS-R in a clinical setting. Second, I was diagnosed with ASD, so I don't have any feelings about not being diagnosed, because I WAS diagnosed. I guess I'm lost as to what you are trying to tell me.
The_Face_of_Boo
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Joined: 16 Jun 2010
Age: 42
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Posts: 33,042
Location: Beirut, Lebanon.
Note that a such significant change in DSM requires an almost consensus of the assigned psychiatrists.
jennica, you won't find such news in the "Pro-Aspie" websites/sources because .... I dunno why, but there are radical non-objective and cult-like people within the aspie communities who imagine a NT world conspiracy against aspies and deny anything that isn't for their liking.
ASPartOfMe post's source is Psychologytoday, you should read in such sources for a more objective view.
I am personally not diagnosed, and I am not sure if I have it or not.
I don't understand why you are dwelling on this aspect of my comment to you? I replied to all your points and you are only commenting back on the one thing that was totally irrelevant to the discussion? That makes little sense to me. This change in the DSM didn't affect me. I got a diagnosis just fine. And I call myself an Aspie even though that isn't technically accurate because the spectrum is vast, and I'm carving out my little place on it.
But what about the things you said about me not having autism? You don't even have a diagnosis, what qualifies you to say such things and to call into question the RAADS-R diagnostic tool?
I have never said that you don't have autism, and I agree with the other user here who said that the RAADS-R alone isn't enough especially if it's taken alone and not within the assessment.
What I've said: You might have it or not, when you go for a ASD diagnosis, you shouldn't expect a 100% certainty that you will be diagnosed as one, there are people who have autistic-like traits (ie. NT siblings of autistic are more likely to be like this) without being eligible for the ASD diagnosis, you should go with the two possibilities (or maybe more) in mind and without hoping for a one single certain outcome.
First, I was given the RAADS-R in a clinical setting. Second, I was diagnosed with ASD, so I don't have any feelings about not being diagnosed, because I WAS diagnosed. I guess I'm lost as to what you are trying to tell me.
I mean, it's possible that you got misdiagnosed - looking back at your opening post back, I wouldn't trust her diagnosis much if I were you.
But if you have trust in the RAADS-R's score (which you did in a clinical setting) then probably you don't have to seek diagnosis elsewhere.
I felt sad - or something, depressed maybe? - when I found out because up to that point I still figured I was different because I was "just quirky" or "extremely creative"...along those lines. Being told I am autistic sorta crushed those concepts for me. But only for a little while! I now realize that I am *still* quirky and creative *and* I have all these traits that when lumped together are called, "autism". I haven't actually changed, nor have my dreams of the future except that I now know that it's intrinsic to who I am, so I can't hope to "learn how to not be this way". But I'd rather know the truth and as both my mom and daughter are too; knowing all this helps me be a better mom to my child.
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