Written off by psychiatrist... help!!

[LemonPop]

If you're a woman, I seriously recommend going to a female psychologist/psychiatrist. They tend to listen a lot better and are less likely to talk over you and dismiss your concerns.

Yes good suggestion, I'll definitely try to do that

 

[icesyckel]

So, gonna play devil's advocate here for just a minute, but did you consider that he may be right and that, regardless of whether you liked him, he's still a licensed mental health provider? Instead of second-guessing him, you should get a second opinion.

I'm not saying this to be mean, but no amount of Internet research makes a layperson qualified to diagnose a mental/neurological condition or illness. That's not to say your research is worthless; quite the contrary, when we laypeople, as non medical experts, conduct research about our symptoms and experiences, it can lead us to discuss our symptoms/experiences with someone qualified to answer our questions and diagnose our problem.

You've described this guy as being "senior" in the field. Many people legitimately believe that they are on the spectrum; however, while some of them are, many are not. Many have a different kind of condition or issue that is diagnosed and treated differently. This is not a bad thing. Being on the spectrum is not an achievement - it's just how some of us are. Not being on the spectrum is not a failure - it's just how some other people are. Your doc has to try to help you figure out how you are and how to help you with your unique symptoms and experiences. To just place you on the spectrum because that's where you, a layperson, believe you need to be - well that's not going to be helpful in the long run.

However, docs are only human. If you feel that he did not take you seriously, or if you feel that he is misdiagnosing you, intentionally or otherwise, then get a second opinion. You could be right, but while you may have suspicions all day long about whether you're on the spectrum, ultimately you will never be able/qualified to make that diagnosis on your own. In fact, I don't believe anyone is able to be sufficiently objective to reliably self-diagnose (doctors included). Sure, self-diagnoses can be correct, but if you stop to think, you will see why even doctors should see another doctor for a final diagnosis.

He was attacking me with all these challenges and questions, I just couldn't process and collect my thoughts.

The fact that you interpreted his questions as"attacks" against you would lead this layperson to suggest you are not approaching this with logic. Any doctor will have to ask you challenging questions, especially once it becomes clear that you have researched on your own and self-diagnosed. They have to get past what you've read and are regurgitating to your actual life experiences, symptoms, and struggles. He's going to want answers you have not prepared, "processed," or "collected" after doing your own research. You know what has happened in your life, and you don't need to prepare yourself to answer such questions accurately. You would only need to prepare yourself in order to affect the outcome of the doctor's diagnosis.

If this offends you, then I apologize, but this quote above in particular makes me think you approached this with a desire (subconscious or otherwise) to get the doctor to diagnose you a particular way - on the spectrum. Any legit doctor isn't going to simply evaluate you for ASD, s/he is going to assess you and evaluate you as a person, selecting the best and most accurate diagnosis regardless of what conclusions you may have independently reached.

He also seemed to sense my dissatisfaction because he said that he was "one of the top psychiatrists in the UK" and if he said I didn't have autism then I didn't. (Felt like this was pretty egotistical posturing to be honest.)

Maybe his comments were "egotistical," but it seems to me that what matters is whether or not his comments are accurate. Is he one of the UK's top psychiatrists? I am assuming you would not have gone to him in the first place if he was not at least a reputable psychiatrist. Also, you described him yourself as being "senior" in the field.

If his statement is accurate, and if he is one of the UK's best and brightest in the field of psychiatry, then he is probably justified in stating that if he determines you don't have autism, then you don't. He would literally be qualified to make that statement. Is it egotistical for a doctor to tell you (albeit bluntly) that his judgment on this matter is definitive? Would you want a doctor that was not confident in his diagnoses?

I'm finding it hard to work up the energy to ask for a second opinion at my doctor's, especially as the psychiatrist I saw is apparently so senior.

It shouldn't be a question of energy. Again, being on the spectrum isn't an achievement. Being NT isn't an achievement either. It should be a question of getting accurately diagnosed. If you feel this "senior" psychiatrist is wrong, then get a second opinion before accepting his diagnosis as final.

However, leave it at the second opinion. I've heard of people who "shop" around until they find someone who will give them a particular diagnosis. I am not sure why anyone would want to seek out a particular diagnosis, but I've heard this happens. While baffling to me, it's not going to result in anything productive.

From what you describe, I think it may be possible your appropriate use of technical terms suggested to him some type of somatic or conversion disorder. This is a poor conclusion for accurate language, but it seems Dr. Dick may have concluded you were listing symptoms, not describing your own experience.

I went through the same thing when being evaluated myself. The doctor needed actual life experiences rather than terms. Some people on the spectrum, myself included, have a tendency to use "big words." If I learn a term, then I use it when appropriate. However, while I told my doc truthfully that I have "social anxiety," for example, that doesn't help him in his evaluation. He needed me to give specific examples. After all social anxiety is not unique to (or even always required for) ASD. They need the specific examples/life stories to diagnose a patient accurately. Being uncomfortable in social settings could be a sign of ASD, but it could also be a sign of Social (Pragmatic) Communication Disorder or even just being shy.

TL;DR:
Don't try to "fix" the game and direct your evaluation to a particular result just because you, a layperson, feel it is appropriate. However, getting a second opinion is reasonable if you have doubts about the first opinion - just don't go "doctor shopping" until you find one who will diagnose you with ASD.

 

[Fridgemagnetman]

So, gonna play devil's advocate here for just a minute, but did you consider that he may be right and that, regardless of whether you liked him, he's still a licensed mental health provider? Instead of second-guessing him, you should get a second opinion.

I'm not saying this to be mean, but no amount of Internet research makes a layperson qualified to diagnose a mental/neurological condition or illness. That's not to say your research is worthless; quite the contrary, when we laypeople, as non medical experts, conduct research about our symptoms and experiences, it can lead us to discuss our symptoms/experiences with someone qualified to answer our questions and diagnose our problem.

You've described this guy as being "senior" in the field. Many people legitimately believe that they are on the spectrum; however, while some of them are, many are not. Many have a different kind of condition or issue that is diagnosed and treated differently. This is not a bad thing. Being on the spectrum is not an achievement - it's just how some of us are. Not being on the spectrum is not a failure - it's just how some other people are. Your doc has to try to help you figure out how you are and how to help you with your unique symptoms and experiences. To just place you on the spectrum because that's where you, a layperson, believe you need to be - well that's not going to be helpful in the long run.

However, docs are only human. If you feel that he did not take you seriously, or if you feel that he is misdiagnosing you, intentionally or otherwise, then get a second opinion. You could be right, but while you may have suspicions all day long about whether you're on the spectrum, ultimately you will never be able/qualified to make that diagnosis on your own. In fact, I don't believe anyone is able to be sufficiently objective to reliably self-diagnose (doctors included). Sure, self-diagnoses can be correct, but if you stop to think, you will see why even doctors should see another doctor for a final diagnosis.



The fact that you interpreted his questions as"attacks" against you would lead this layperson to suggest you are not approaching this with logic. Any doctor will have to ask you challenging questions, especially once it becomes clear that you have researched on your own and self-diagnosed. They have to get past what you've read and are regurgitating to your actual life experiences, symptoms, and struggles. He's going to want answers you have not prepared, "processed," or "collected" after doing your own research. You know what has happened in your life, and you don't need to prepare yourself to answer such questions accurately. You would only need to prepare yourself in order to affect the outcome of the doctor's diagnosis.

If this offends you, then I apologize, but this quote above in particular makes me think you approached this with a desire (subconscious or otherwise) to get the doctor to diagnose you a particular way - on the spectrum. Any legit doctor isn't going to simply evaluate you for ASD, s/he is going to assess you and evaluate you as a person, selecting the best and most accurate diagnosis regardless of what conclusions you may have independently reached.



Maybe his comments were "egotistical," but it seems to me that what matters is whether or not his comments are accurate. Is he one of the UK's top psychiatrists? I am assuming you would not have gone to him in the first place if he was not at least a reputable psychiatrist. Also, you described him yourself as being "senior" in the field.

If his statement is accurate, and if he is one of the UK's best and brightest in the field of psychiatry, then he is probably justified in stating that if he determines you don't have autism, then you don't. He would literally be qualified to make that statement. Is it egotistical for a doctor to tell you (albeit bluntly) that his judgment on this matter is definitive? Would you want a doctor that was not confident in his diagnoses?



It shouldn't be a question of energy. Again, being on the spectrum isn't an achievement. Being NT isn't an achievement either. It should be a question of getting accurately diagnosed. If you feel this "senior" psychiatrist is wrong, then get a second opinion before accepting his diagnosis as final.

However, leave it at the second opinion. I've heard of people who "shop" around until they find someone who will give them a particular diagnosis. I am not sure why anyone would want to seek out a particular diagnosis, but I've heard this happens. While baffling to me, it's not going to result in anything productive.



I went through the same thing when being evaluated myself. The doctor needed actual life experiences rather than terms. Some people on the spectrum, myself included, have a tendency to use "big words." If I learn a term, then I use it when appropriate. However, while I told my doc truthfully that I have "social anxiety," for example, that doesn't help him in his evaluation. He needed me to give specific examples. After all social anxiety is not unique to (or even always required for) ASD. They need the specific examples/life stories to diagnose a patient accurately. Being uncomfortable in social settings could be a sign of ASD, but it could also be a sign of Social (Pragmatic) Communication Disorder or even just being shy.

TL;DR:
Don't try to "fix" the game and direct your evaluation to a particular result just because you, a layperson, feel it is appropriate. However, getting a second opinion is reasonable if you have doubts about the first opinion - just don't go "doctor shopping" until you find one who will diagnose you with ASD.

ou know what has happened in your life, and you don't need to prepare yourself to answer such questions accurately. You would only need to prepare yourself in order to affect the outcome of the doctor's diagnosis.

This is particularly difficult with people with a myriad of problems. The point with aspergers you do need to prepare a lot of the time.

 

[Amy Susan Rose]

A very well thought out perspective, to say the least, icesycel. I didn't realize that for many when they seek diagnosis it can be a very intense examination of one's very core and when looking at LemonPop's experience it almost seems like an interrogation---with the "terror" at the forefront. I still think her doc, from what she said, was intimidating and feel that perhaps this was because she apparently did go in expecting a certain diagnosis, along with being very educated regarding terms, features of those on the spectrum, etc. I believe most doctors do not appreciate this; they take their degrees and knowledge very seriously, as they should. However is it not unusual for one to approach an internal medicine specialist, for example, with, lets say, a stomach complaint and state that perhaps one has an ulcer or acid reflux. So going into a physician with a mindset towards a certain diagnosis is certainly not unusual. From reading LemonPop's post it's apparent she is an introspective woman along with being extremely educated and I would bet my last dollar that for the most part the people who go see this particular doctor do not approach him with that manner and credentials and therefore threw him for a loop. I have had experiences myself with these type of professionals and it is certainly was not pleasant and I can understand LemonPop's quote "to work up the energy" to initiate the process of finding another doctor and the fear of going through the same experience with the same results.

Women on the spectrum generally do not receive the same treatment by male physicians regarding an ASD diagnosis as males. We do present differently and the profession is just beginning to acknowledge this. Regardless of the credentials of the doctor she visited I believe he probably belongs to the male bastion of those who are set in their beliefs, "Many girls and women are going undiagnosed or misdiagnosed because the majority of the research has been conducted on males and there is a great need of research based on females compared to NT females, research based assessment tools for females and interventions for females. There is also a great need for these tools to be made readily accessible to professionals, in other countries and other languages. At present, there are few professionals in the world both trained and experienced in assessing and/or working with females on the Spectrum" (Adult Autism/Asperger Syndrome Assessment in Females). Therefore I agree with granolaturtle: "If you're a woman, I seriously recommend going to a female psychologist/psychiatrist. They tend to listen a lot better and are less likely to talk over you and dismiss your concerns." Male physicians indeed can be very condescending when it comes to female patients (not all of course).

I was fortunate that I did not have to dig so deep during my diagnosis process. I pretty much exhibited many of the symptoms associated with being on the spectrum and had family members and friends who backed up much of my history. I had been going to the clinic for twenty years prior to my diagnosis at age 40 and was considered on the autism spectrum until Aspergers was recognized in the nineties and the traits were more relevant to my conditions--- I was verbal, had received a college education, and had a higher intelligence than those labelled autistic.

I hope LemonPop does work up the energy to seek another opinion. I don't consider what she is doing doctor shopping for a certain diagnosis; I think rather she wants a professional diagnosis to validate what she already knows deep in her soul.

 

[Buzzerfly]

So, gonna play devil's advocate here for just a minute, but did you consider that he may be right and that, regardless of whether you liked him, he's still a licensed mental health provider? Instead of second-guessing him, you should get a second opinion.

I'm not saying this to be mean, but no amount of Internet research makes a layperson qualified to diagnose a mental/neurological condition or illness. That's not to say your research is worthless; quite the contrary, when we laypeople, as non medical experts, conduct research about our symptoms and experiences, it can lead us to discuss our symptoms/experiences with someone qualified to answer our questions and diagnose our problem.

You've described this guy as being "senior" in the field. Many people legitimately believe that they are on the spectrum; however, while some of them are, many are not. Many have a different kind of condition or issue that is diagnosed and treated differently. This is not a bad thing. Being on the spectrum is not an achievement - it's just how some of us are. Not being on the spectrum is not a failure - it's just how some other people are. Your doc has to try to help you figure out how you are and how to help you with your unique symptoms and experiences. To just place you on the spectrum because that's where you, a layperson, believe you need to be - well that's not going to be helpful in the long run.

However, docs are only human. If you feel that he did not take you seriously, or if you feel that he is misdiagnosing you, intentionally or otherwise, then get a second opinion. You could be right, but while you may have suspicions all day long about whether you're on the spectrum, ultimately you will never be able/qualified to make that diagnosis on your own. In fact, I don't believe anyone is able to be sufficiently objective to reliably self-diagnose (doctors included). Sure, self-diagnoses can be correct, but if you stop to think, you will see why even doctors should see another doctor for a final diagnosis.



The fact that you interpreted his questions as"attacks" against you would lead this layperson to suggest you are not approaching this with logic. Any doctor will have to ask you challenging questions, especially once it becomes clear that you have researched on your own and self-diagnosed. They have to get past what you've read and are regurgitating to your actual life experiences, symptoms, and struggles. He's going to want answers you have not prepared, "processed," or "collected" after doing your own research. You know what has happened in your life, and you don't need to prepare yourself to answer such questions accurately. You would only need to prepare yourself in order to affect the outcome of the doctor's diagnosis.

If this offends you, then I apologize, but this quote above in particular makes me think you approached this with a desire (subconscious or otherwise) to get the doctor to diagnose you a particular way - on the spectrum. Any legit doctor isn't going to simply evaluate you for ASD, s/he is going to assess you and evaluate you as a person, selecting the best and most accurate diagnosis regardless of what conclusions you may have independently reached.



Maybe his comments were "egotistical," but it seems to me that what matters is whether or not his comments are accurate. Is he one of the UK's top psychiatrists? I am assuming you would not have gone to him in the first place if he was not at least a reputable psychiatrist. Also, you described him yourself as being "senior" in the field.

If his statement is accurate, and if he is one of the UK's best and brightest in the field of psychiatry, then he is probably justified in stating that if he determines you don't have autism, then you don't. He would literally be qualified to make that statement. Is it egotistical for a doctor to tell you (albeit bluntly) that his judgment on this matter is definitive? Would you want a doctor that was not confident in his diagnoses?



It shouldn't be a question of energy. Again, being on the spectrum isn't an achievement. Being NT isn't an achievement either. It should be a question of getting accurately diagnosed. If you feel this "senior" psychiatrist is wrong, then get a second opinion before accepting his diagnosis as final.

However, leave it at the second opinion. I've heard of people who "shop" around until they find someone who will give them a particular diagnosis. I am not sure why anyone would want to seek out a particular diagnosis, but I've heard this happens. While baffling to me, it's not going to result in anything productive.



I went through the same thing when being evaluated myself. The doctor needed actual life experiences rather than terms. Some people on the spectrum, myself included, have a tendency to use "big words." If I learn a term, then I use it when appropriate. However, while I told my doc truthfully that I have "social anxiety," for example, that doesn't help him in his evaluation. He needed me to give specific examples. After all social anxiety is not unique to (or even always required for) ASD. They need the specific examples/life stories to diagnose a patient accurately. Being uncomfortable in social settings could be a sign of ASD, but it could also be a sign of Social (Pragmatic) Communication Disorder or even just being shy.

TL;DR:
Don't try to "fix" the game and direct your evaluation to a particular result just because you, a layperson, feel it is appropriate. However, getting a second opinion is reasonable if you have doubts about the first opinion - just don't go "doctor shopping" until you find one who will diagnose you with ASD.

1) i don't believe ASD is a "mental illness", and it shouldn't be treated as such. When someone's brain is, literally, made differently and functions differently than the norm, it shouldn't be called "sick".

2) What exactly makes a licensed professional professional or capable of recognizing the autistic experience? At best, he/she could be clueless with a big heart. Autism cannot be understood without its experience. I've met people who try to help those on the spectrum with certain issues (like sensory or support staff for example). Some of them seem at least sympathetic or curious about the autistic experience. Psychologists? No. They have an interest in being RIGHT, and hiding their flaws.

3) I'm going to play devil's advocate here: maybe the original poster was not actually interpreting the docs behavior as "attacking" or "egotistical". Let's assume it was so, because that was this person's experience, and if anyone needs to defend that the doctor was in fact very human-like, there's a whole construct all around us backing him up, so he doesn't need the extra defense. I had two female friends in college who became psychiatrists. They had some of the most neurotic, disturbed issues of anyone I'd ever met. But rather than stay sweet about those like they were then, they stayed in school an extra long time, got some "licenses" and now spend their days making money off of helpless people who they feel vastly superior to.

All that I'm getting at is, being any kind of professional in this world doesn't give you the right to treat others like crap, become un-human, or even automatically earn you respect. That is earned by the fruits of your labor and ability to truly recognize that things outside of yourself exist.

 

[icesyckel]

A very well thought out perspective, to say the least, icesycel.

Thank you - that's always the goal. I admit that I tend to "lurk" in these forums far more often than I actually post. Usually others have posted anything and everything from multiple perspectives, and I feel like things I post often get taken differently than I intended anyway, so it's always nice to see some positive feedback for a change.

I still think her doc, from what she said, was intimidating and feel that perhaps this was because she apparently did go in expecting a certain diagnosis, along with being very educated regarding terms, features of those on the spectrum, etc. I believe most doctors do not appreciate this

I believed her when she said the doctor intimidated her. I thought it possible that the intimidation might have been a subjective response on her part to the whole assessment process, which seems to be a pretty common reactions from what I've read of others' posts on here in the past. My own experience was somewhat intimidating. Lots of answering uncomfortable questions - it is essentially an interrogation even when done correctly.

As to whether this doctor was objectively intimidating or rude, well there's no way for me to gauge that. As I said, it was a subjectively intimidating process for me, though I don't believe the doctors were objectively and/or intentionally being intimidating. Possibly this one was. If so, then all the more reason to get a second opinion.

However is it not unusual for one to approach an internal medicine specialist, for example, with, lets say, a stomach complaint and state that perhaps one has an ulcer or acid reflux. So going into a physician with a mindset towards a certain diagnosis is certainly not unusual.

That is certainly true. However, that which is typical is not necessarily ideal.

I once read an article (on one of the med sites like Mayo clinic or something) about how even with minor colds and sore throats, it is best to avoid sharing your beliefs about the ultimate diagnosis with the physician, as physicians are human and therefore subject to suggestion, and this can lead to misdiagnoses. So, having read that, I try to just report my symptoms/experiences to my physician to avoid leading him/her to a conclusion that could be wrong.

Example: I've been prescribed antibiotics b/c I told a doctor at urgent care I thought I had strep. She didn't swab me. Later, it was ruled a virus. I went through diarrhea inducing antibiotics for nothing. Granted, the physician should have swabbed me, but you take this risk whenever you suggest a diagnosis to a physician - especially if he or she is particularly busy that day.

As someone else pointed out in response to my post, AS/ASD is not truly an illness, but to get any sort of treatment/therapy/services, it does need to be diagnosed by a professional, and so when discussing the subject of assessments and psychiatrists, I sometimes erroneously refer to it as a condition or illness. The same logic applies though. As many mental illnesses are misdiagnosed as AS/ASD, and vice versa.

At present, there are few professionals in the world both trained and experienced in assessing and/or working with females on the Spectrum" (Adult Autism/Asperger Syndrome Assessment in Females). Therefore I agree with granolaturtle: "If you're a woman, I seriously recommend going to a female psychologist/psychiatrist. They tend to listen a lot better and are less likely to talk over you and dismiss your concerns." Male physicians indeed can be very condescending when it comes to female patients (not all of course).

While I am certain there are male physicians who respect their female patients/clients, which you did allow, I tend to agree that women will be more comfortable speaking with a female doctor/clinician, just as a male would in all probability feel more comfortable speaking with a male doctor/clinician.

I'm a bit of an exception to this myself, but I see how it makes sense that she might be more comfortable getting a second opinion from a female doctor/clinician, and it is a great suggestion. Also, your point that AS/ASD presents differently in females is both accurate and well-taken. As I pointed out in my post, a 2nd opinion is probably a good idea here. I hope she tries this.

I hope LemonPop does work up the energy to seek another opinion.

Ditto.

I don't consider what she is doing doctor shopping for a certain diagnosis; I think rather she wants a professional diagnosis to validate what she already knows deep in her soul.

I don't think that she was doctor shopping for a particular Dx either, but in recommending she get a 2nd opinion, I felt it prudent to caution her against getting a 3rd, 4th, and 5th opinion until she eventually finds a physician who will ratify her self-diagnosis. I'm not saying she would do this or planned to, but it was just my intent to advise her to resist the temptation.

I know from experience what it feels like to find out about AS/ASD and to feel that condition resonates with my own life experiences.

In my area, the assessment is a multi-step process involving more than one physician/clinician. First I underwent written and verbal testing administered by a psychologist, who then consulted with some other physicians/clinicians (whom I did not meet) about the results, and then I was referred to a neuropsychiatrist for confirmation of my provisional diagnosis. The process took months.

However, when I told the psych administering the tests I had come in to be tested for AS/ASD, he refused and told me it does not work that way. He advised me that, while I might be right, in his profession they start with a general psych assessment and then progress to testing for more specific conditions/diagnoses based on the results of the general testing. My testing took 3-4 sessions. While my suspicions of ASD were finally confirmed, the assessment process also identified a couple of co-morbidities I hadn't thought to be tested for. Fortunately, the psych who did my testing did not let my suspicions/suggestions affect how he proceeded, or he'd have just tested for AS/ASD.

Anyway, TL;DR, if my post seemed mean or rude, then that was not my intent. I was just trying to offer productive advice, as I have been where she is before and believe it was for the best that I let the professionals do their job the way they have been trained to do it, without suggestions from me that might've altered the results. I did think she seemed overly eager for a particular diagnosis, but I know what that is like too and hope she gets the most accurate Dx possible.

 

[icesyckel]

1) i don't believe ASD is a "mental illness", and it shouldn't be treated as such. When someone's brain is, literally, made differently and functions differently than the norm, it shouldn't be called "sick".

I happen to agree with you that ASD is not a "mental illness," as it is more a neurological condition/mental state/peculiar way of thinking, but that takes too long to type every time. Also, I am not a doctor, so I apologize that, as a layperson, my clinical terms aren't always spot-on. I try, but I am sure I slip up from time to time.

However, I believe my point was more that sometimes a mental illness is misdiagnosed as ASD and sometimes ASD is misdiagnosed as a mental illness (or other neurological condition/non-illness besides ASD, for that matter). Accordingly, it is best not to try to control the result of a mental evaluation/assessment in order to avoid the outcome having been corrupted by lay opinions.

3) I'm going to play devil's advocate here: maybe the original poster was not actually interpreting the docs behavior as "attacking" or "egotistical".

I believe that she used those terms or terms very similar to them. Anything is possible certainly, and so she may have meant something else entirely, but I was just responding to what she wrote.

I had two female friends in college who became psychiatrists. They had some of the most neurotic, disturbed issues of anyone I'd ever met. But rather than stay sweet about those like they were then, they stayed in school an extra long time, got some "licenses" and now spend their days making money off of helpless people who they feel vastly superior to.

That's unfortunate to be sure. You seem to have some negative feelings/perceptions about psychiatrists, but I would suggest that it is best to refrain from drawing generalizations based upon a sample size of two psychiatrists. I myself went through the assessment process, and the professionals I worked with weren't perfect, but I believe they were both professional and objective. I certainly didn't have the same experiences with/impressions from them that you you describe concerning your two friends from college.

All that I'm getting at is, being any kind of professional in this world doesn't give you the right to treat others like crap, become un-human, or even automatically earn you respect.

I agree that being a professional does not entitle one to "treat others like crap." I'm not sure what it means to "become un-human," so I can't really agree or disagree. I do disagree with your point that being a professional do not entitle one to respect.

One does not become a professional in this field without extensive education and also practical experience. That's a lot of hard work, and I believe hard work should be respected. I might not like a physician's bedside manner, for example, but I still respect him/her for having undergone the extensive studying and training required to be a physician.

That is earned by the fruits of your labor and ability to truly recognize that things outside of yourself exist.

I don't know anyone who denies that things outside themselves exist, but I agree it would be difficult to respect anyone who denied this. I also agree that the fruits of ones labor can earn respect (or jeopardize it if the fruits are bad).

 

[icesyckel]

This is particularly difficult with people with a myriad of problems. The point with aspergers you do need to prepare a lot of the time.

I tend to agree that preparation is generally useful for those with AS a lot of the time. However, why would preparation be necessary in this context?

To avoid being misunderstood (which frequently happens to me for some reason), let me be clear that I am legitimately asking this question out of pure curiosity with no other motivations at all. If that was clear from the question, then I apologize for this added verbiage.

 

[Amy Susan Rose]

Such a long and winding road for so many to obtain formal diagnosis and possibly LemonPop along with many others do not realize this.

I once read an article (on one of the med sites like Mayo clinic or something) about how even with minor colds and sore throats, it is best to avoid sharing your beliefs about the ultimate diagnosis with the physician, as physicians are human and therefore subject to suggestion, and this can lead to misdiagnoses. So, having read that, I try to just report my symptoms/experiences to my physician to avoid leading him/her to a conclusion that could be wrong.

I disagree regardless of the highly esteemed source. I'm sure most docs today realizes that most of us visit the internet before the doctor. If they are proficient in their jobs they know when to ignore or pursue their patient's cyber opinions. All research I did regarding finding a diagnostician advised either finding a psychiatrist or psychologist who specializes in ASD or contacting an organization (which indicates the person strongly believes they are on the Spectrum through [most likely] a combination of information acquired on the internet along with other sources):

• Typically you need to see either a clinical social worker, a licensed professional counselor, a psychologist, a psychiatrist or neuropsychiatrist. It is important to see a professional who specializes in autism spectrum disorders or Asperger's Syndrome, who is familiar with Aperger's Syndrome in adults.
• One way to find the right person in your geographical location is to contact The Global and Regional Asperger Syndrome Partnership (GRASP), and the Autism Society of America (ASA). These organization may have chapters in your area. If not, they can provide you with the names of professionals who would know someone to refer you to, in your geographical area. I am an adult and I think I may have Asperger’s Syndrome (AS). How and why should I get diagnosed if in fact I do have AS?

While my suspicions of ASD were finally confirmed, the assessment process also identified a couple of co-morbidities I hadn't thought to be tested for. Fortunately, the psych who did my testing did not let my suspicions/suggestions affect how he proceeded, or he'd have just tested for AS/ASD.

Very true for comorbidities are not uncommon for those of us on the spectrum" Psychiatric comorbidities in asperger syndrome and high functioning autism: diagnostic challenges

Growing up in the sixties was difficult for me due to Aspergers not known or recognized by the majority of the medical establishment. Autism was considered a condition which required institutionalization. One certainly had to exhibit dramatic and profound symptoms to receive this diagnosis. However I survived despite all I missed out on due to parents and teachers who were ignorant and in denial. Later in life I came to realize that the pedantic methods used to diagnose those on the spectrum today are not written in stone and change frequently for some features of what is accepted regarding the etiology of ASD today may change tomorrow. The key, I believe, is for professionals to acknowledge that those of us considered Aspies are an extremely individual lot: "Because Asperger syndrome varies widely from person to person, making a diagnosis can be difficult. It is often diagnosed later in children than autism and sometimes difficulties may not be recognized and diagnosed until adulthood." Asperger syndrome - NAS. Like so many on the Spectrum I have researched much within this field and find it interesting that diagnosticians, psychologist, psychiatrists, and neuropsychologist/psychiatrist do not and cannot always agree on the proper methods of determining if someone is on the spectrum. Their tests certainly can be biased for one reason or another for they are only human and still much needs to be learned regarding those on the Spectrum especially when each person presents differently (as noted earlier): "Symptoms and deficit of ASD are differently expressed along the spectrum: peculiar manifestations of the disease can be seen in the most severely disabled patients, whereas other manifestations are seen in patients with a lower degree of disability [9]. The patients with the lowest expression of the disease, ‘High Function’ ASD and Asperger’s Syndrome [10], are the most frequently misdiagnosed for example as schizophrenia [11] or personality disorders [12] because they are more distant from nuclear cognitive and verbal deficits." Misdiagnosis of High Function Autism Spectrum Disorders in Adults: An Italian Case Series

Each of us possess different perspectives, backgrounds, and experiences. Albeit, I will always feel strongly that we on the Spectrum are the experts.

 

[icesyckel]

I disagree regardless of the highly esteemed source.

Well, admittedly I cannot recall with precision which source published the article, as this has been a long time. That incident with the antibiotics and the strep actually brought it back to memory only this past November (when that all went down).

I'm sure most docs today realizes that most of us visit the internet before the doctor. If they are proficient in their jobs they know when to ignore or pursue their patient's cyber opinions.

In theory, I agree with what you are saying. In practice, even the most brilliant doctors are human, get overworked, and without meaning to let things affect their professional judgment that perhaps should not. However, in ideal circumstances, they should be disciplined enough not to let suggestions from non-academic sources of information overly influence their judgment.

Of course, then there is always the risk that you may have a crappy doctor (like I did at that Urgent Care Clinic). Then perhaps the risk of affecting their judgment is not the biggest issue anyway.

Typically you need to see either a clinical social worker, a licensed professional counselor, a psychologist, a psychiatrist or neuropsychiatrist. It is important to see a professional who specializes in autism spectrum disorders or Asperger's Syndrome, who is familiar with Asperger's Syndrome in adults.

This is a good statement of how it should work. Find someone knowledgeable in ASD with a relevant degree and experience, then go see him/her. I think it varies based on where you live. Where I am, they will only do it the way I described. I tried to see a neuropsychiatrist first, for example, but they won't do testing here (probably insurance won't pay them to), so I had to start with a psychologist. All in all, it took forever just to figure out how the process works. Do it wrong, and I was told the government/insurance might not recognize it, and then I'd just wasted time and money.

One way to find the right person in your geographical location is to contact The Global and Regional Asperger Syndrome Partnership (GRASP), and the Autism Society of America (ASA).

Useful info. I don't recall running into this when I tried to get tested. I phoned different specialists in my area (none of whom would give me an appointment until I had done X, Y, and/or Z...) until someone took pity and explained the lengthy process to me over the phone. Hopefully these sites will make it easier for others.

Growing up in the sixties was difficult for me due to Aspergers not known or recognized by the majority of the medical establishment. Autism was considered a condition which required institutionalization. One certainly had to exhibit dramatic and profound symptoms to receive this diagnosis.

I didn't grow up in the sixties, but I get what you are saying (Temple Grandin I've read had a similar experience with the institutionalization issue). I grew up in a different part of the US than where I now live. No one knew jack about AS/ASD - not my doctors, and not my parents. I would have been an obvious case in a different area. Instead, I suffered a lot being an undiagnosed case, as a lot of my "behavior" was interpreted to be malicious that would otherwise have been understood as just not being neurotypical. For example, I did not like to shake hands. I did not like to be touched. I hated loud noises. I hated fluorescent lights at school and seemed to know more about some subjects than my teachers, resulting in me being constantly annoyed, harassed, and bullied. Had I been a small kid, I'd have had it a lot worse, I am sure.

I got Dx'd as an adult several years ago when trying to sort out some marital conflicts. We were trying to work things out, and then we stumbled on information on TV and the Internet about Asperger's, and it was like a light had been turned on. (Now if only getting Dx'd had solved all those problems instead of just explaining them...)

However I survived despite all I missed out on due to parents and teachers who were ignorant and in denial.

Fortunately, my parents were older when they unexpectedly had me. They were more patient than my teachers and classmates. They knew something was different about me, though they did not know quite what. I mean, for starters it was pretty obvious that I had zero interest in other children. That's apparently not normal, lol. Still, I had may share of bullies - many of whom were teachers.

Later in life I came to realize that the pedantic methods used to diagnose those on the spectrum today are not written in stone and change frequently for some features of what is accepted regarding the etiology of ASD today may change tomorrow.

Well, I certainly can't dispute that (*cough*cough* DSM-IV vs. DSM-V). Still, I don't believe human beings are sufficiently objective in their self-perceptions to allow for accurate self-diagnosis.

Doesn't mean we shouldn't do research and, based on our suspicions and research, go seek a professional evaluation. However, any reputable professional is going to want to hear not just that you have "a lack of social or emotional reciprocity" but specific examples of this from your life. People read a criterion like this and think, "Sure that's happened to me," but probably even the most neurotypical person has had isolated incidents that might be described a such (I don't know).

The physician/therapist probably has to work very hard to get around our Internet-based preconceptions and ideas in order to get the actual information needed for an objective evaluation, which probably always feels like being interrogated. I know my evaluator just came out and told me that he needed me to dispense with what I thought I knew and just answer his (written and verbal) questions. I thought it logical to do that. After all, I was paying him to do a job, and it seemed logical to let him decide how best to do it.

However, towards your points, I agree that the criteria shift, and even the best clinician has to abide by literature and tests that aren't as static or clear to interpret as a swab for strep. After all, it is know people on the spectrum often engage in stimming, but my evaluator told me that stimming, while associated with ASD, would not be something considered in the evaluation, as it was not in the DSM. Many of the things I had read about people with ASD are not considered in the DSM's description of ASD.

Like so many on the Spectrum I have researched much within this field and find it interesting that diagnosticians, psychologist, psychiatrists, and neuropsychologist/psychiatrist do not and cannot always agree on the proper methods of determining if someone is on the spectrum. Their tests certainly can be biased for one reason or another for they are only human and still much needs to be learned regarding those on the Spectrum especially when each person presents differently

I agree with you on all of this. However, it doesn't follow that self-diagnosing is more reliable simply because professional diagnoses may not be 100% accurate/reliable. If anything, this renders self-diagnoses even less reliable. If it is not simple for someone who studies neurology and psychiatry to make an accurate diagnosis, then it won't be any easier or less complex for the layperson, especially is he or she had already reached a decision and is seeking an ASD Dx. You may not be arguing that point with what you wrote, but I thought that this point goes along with it at least.

I will always feel strongly that we on the Spectrum are the experts.

In some respects this is true. We know what it is like to live a life on the spectrum in a way that no NT will ever understand.

However, let me ask you two questions:

(1) Do you believe that it possible to be misdiagnosed and be erroneously placed on the spectrum?

If you answer yes to #1, then (2) does being placed "on the Spectrum" truly make us experts?

If you answer no to #1, then (2) can anyone be on the spectrum just because s/he says it is so? (In other words, is it a subjective choice or is it biologically and objectively how you are at birth?)

Regardless, even if we are the "experts" because we're on the spectrum, our own personal opinions don't really present a very reliable, scientific test for autism spectrum disorders. I'm not saying we have a perfect test, but we work with what we have. Perhaps one day there will be a neurological scan that can pinpoint where we are on the spectrum, but until then these professional assessments are the best tools we have for people like OP and for society at large, no?

 

[Amy Susan Rose]

Again you present a very thorough, well thought out counterarguments. When I was a child I rarely spoke in sentences, rocked, avoided social situations, dropped out of high school (whereas my NT siblings excelled in their academic pursuits and social lives) and exhibited other symptoms which today would have presented red flags to educators and perhaps my parents, who lived in an era and came from families where anything considered abnormal (which autism was in those days) was not talked about or validated for those of us on the high end of the Spectrum. I remember being so alone and isolated yet nothing was done. I am so thankful that times have changed; otherwise I may have totally lost it as an adult and ended up institutionalized or if in an earlier time locked up in the attic.

 

[icesyckel]

One thing that really helped me was my wife going with me. She was able to verbalize all the ways I am different that I either have a hard time explaining or don't even notice. Having an advocate stare a psychologist/psychiatrist in the face and say "this person is not neurotypical" can be very effective. Having someone there to corroborate your experiences greatly reduces the chance that the doctor will try to push you around or think you are making it up.

I should have done this. my wife
would've sold them on it
in 5 mins or less.

 

[icesyckel]

Yeah work accommodations I guess but I didn't think there were any disability benefits that were available in the USA for people diagnosed with high functioning ASD.

depends in US on where you are and how high functioning. In US generally it is just about whether you're able to work in the judgment of uncle sam. some states have other options tho. high functioning usually means able to work but not always

 

[Amy Susan Rose]

(1) Do you believe that it possible to be misdiagnosed and be erroneously placed on the spectrum?

If you answer yes to #1, then (2) does being placed "on the Spectrum" truly make us experts?

If you answer no to #1, then (2) can anyone be on the spectrum just because s/he says it is so? (In other words, is it a subjective choice or is it biologically and objectively how you are at birth?)

Regardless, even if we are the "experts" because we're on the spectrum, our own personal opinions don't really present a very reliable, scientific test for autism spectrum disorders. I'm not saying we have a perfect test, but we work with what we have. Perhaps one day there will be a neurological scan that can pinpoint where we are on the spectrum, but until then these professional assessments are the best tools we have for people like OP and for society at large, no?

Yes, I do believe one can be erroneously misdiagnosed on the Spectrum. Also visa versa; one may be diagnosed with something else but in truth be on the Spectrum. I can certainly understand why some people who are self diagnosed would refuse to go through the rigors and/or expense of an official diagnosis; diagnosticians are human and therefore are subject to error regardless of how accurate the tests may be (and that can be subject to debate). Yes, it would be wonderful if a neurological scan of some sort could be developed to give a certain diagnosis but I believe that this will never happen for those on the Spectrum are so complex not just physiologically/neurologically, but emotionally and spiritually as well. In history there were cultures who held in honor those with Asperger traits..."Native American communities are also much more tolerant of mental disabilities and disorders because of a deep cultural belief that altered mental states bring better connections to the spirit world. This also comes with an understanding that different mental capacities bring new types of learning into a tribe community....In many different tribes disabled people were heralded members of the community, their “gift” [9] of a different reality “challenged and energized” [10] the rest of the tribe community. These members of the community were called heyoka, they “evoked the magic of chaos” and had an indescribable amount of wakan, a holy, mysterious, or incomprehensible power...Other cultural practices also make room for cognitive difference. Autism isn’t seen as an issue like in western culture. A typical symptom of autism is lack of eye contact, but in Native American culture lack of eye contact is seen as paying the utmost respect for your elders. It is common in conversation for people to be looking at the sky, the ground, anywhere but the eyes of the person you are directly addressing.[14] Much of this has to do with the child rearing practices of Native Americans—there is very little emphasis on conformity. A child is allowed to do whatever they want as long as they are contributing to the overall community in some way. The level of tolerance for “deviant” behavior is much larger because there is no real range of “good” behavior a child is supposed to emulate or conform to." “Everything in Nature goes in curves and circles”: Native American Concepts of Disability – History of Medicine in America

I should have done this. my wife
would've sold them on it
in 5 mins or less.

I doubt this if you would have visited LemonPop's physician. Spouses can be extremely subjective.

 

[icesyckel]

icesyckel said: ↑
I should have done this. my wife
would've sold them on it
in 5 mins or less.

I doubt this if you would have visited LemonPop's physician. Spouses can be extremely subjective.

I was mostly joking with that comment, but I believe my wife was persuaded before I was even tested. I didn't accept being an "aspie" until I'd been tested and the results were confirmed by a neuro-psych. Even then, I harbored doubts for quite some time. Now I've come to accept it, but my wife had accepted probably a year or more before I did.

 

[icesyckel]

Yes, it would be wonderful if a neurological scan of some sort could be developed to give a certain diagnosis but I believe that this will never happen for those on the Spectrum are so complex not just physiologically/neurologically, but emotionally and spiritually as well.

Interesting. I tend to believe the cause is genetic and that one day genetic testing may provide an objective test (I don't, however, believe any single gene is responsible for AS/ASD). Of course, that's just my belief about the future, but who knows? I could be wrong.

 

[Amy Susan Rose]

Icesyckel, I don't doubt for a moment that your wife suspected and accepted Asperger's before you did. In this case your wife is the expert; she lives with you and knows you most intimately; a doctor sees you for a limited amount of time and relies mainly on tests to determine your diagnosis. My point was that LemonPop's doc sounded as if he was a real .........and would not have given your wife's opinion a moment's thought since she could not possibly know anything regarding one on the Spectrum because she probably doesn't have a number of degrees after her name. LemonPop, on the other hand, did possesss academic prestige and obviously high critical thinking skills but yet wasn't taken seriously by this man. In my opinion it doesn't take an Albert Einstein (who most likely was on the Spectrum) to diagnose---I still believe someone who is knowledgeable, a critical thinker, and has been affected by Aspergers is an expert whether it be ourselves or a loved one. And I know you were mostly joking; I just had to be a smart ass. Sorry