How Many People Here Are actually Autistic or have Aspergers

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While it's true that mis-diagnoses are made by professionals, the rate of misdiagnosis is much lower with professionals than with an average person who knows nothing about medicine or psychology (depending on what they're trying to diagnose). There's a big difference in accuracy between a person using wikipedia or webmd to make a diagnosis and a person using 8-12 years of higher education plus more years of career experience to make a diagnosis.

Another reason why self-diagnoses are so unreliable is because they're made with a large bias. Often people who come up with a self-diagnosis had a motivation to do so. They're hypochondriacs or they perceive some sort of benefit in having a certain condition or disease (this is especially common with psychological self-diagnoses where a people often see having a disorder as an excuse for certain behavior). Or they may just naturally blow up small problems into big ones and automatically assume the worst case scenario. This is why physicians and psychologists rarely treat themselves but rather have their own physicians/psychs that they see for their health care, and it's also why clinical psych and medical students are warned against coming up with self-diagnoses as they learn about various disorders, diseases, and conditions and their symptoms. Put simply it's important for the person making the diagnosis to be removed from the patient so that their decision making is unbiased.

I stand by my comments (which make no reference to ratios of mis-diagnosis).

All of which falls down when the physician concerned has insufficient education coupled with insufficient experience in some particular sub-field of practice, and yet insist on practicing in that area none the less. Keep in mind the patient usually has more knowledge about and understanding of self than someone they met an hour ago does.

Also keep in mind that if a patient mistakenly diagnoses themselves, this does not give them the authority to write a script out for themselves. When doctors mis-diagnose, they do so in the context of the potential to follow this up with potentially harmful medicines/drugs.
Physicians are people so they have biases too. Particularly relevant to the membership of this board is the extent to which so many physicians are apparently only too happy to dismiss any suggestion of an ASD in patients, purely on the basis of their biases and prejudices about ASDs.

Perhaps, but surely most people have motivation to do most things they do, else why do them?


Doctors have egos and these do not magically disappear when they step in the clinic door, so they do not loose their bias when they step in the door either. On the contrary, experience working in a particular area, day after day, year after year, most usually results in the formation of biases based on the experience.

You have some pretty warped perceptions medicine. In order:

- A physician doesn't practice outside of their area of expertise. You do realize there's a lot more to becoming a doctor than just med school, right? There's residencies and internships, which typically double the length of a doctor's education and ensure that they're well experienced in their area of expertise. See, a cardiologist can't just wake up one day and decide to start practicing neurology. In order to do that they'd have to go through a 2-5 year residency and internship in neurology to be able to practice as a neurologist. Now granted there are quacks out there but they're rare (you're making it sound like every other doctor is a quack). And yes, sometimes good doctors do misdiagnose. That's why you're supposed to get a second opinion when you get any serious diagnosis.

- I've never heard of a doctor dismissing the idea of a patient having ASD. In fact, ASD diagnoses have skyrocketed over the past 20 years so obviously professionals are becoming a lot more liberal with handing out those diagnoses.

- When I say "bias" I meant a bias that would cause a person to lean toward making a diagnosis despite there being no reason to do so. While a doctor might be biased in their self-image and perception of their abilities, they aren't biased about handing out a diagnosis (although they tend to be hesitant when it comes to handing out life changing diagnoses like anti-social personality disorder for the reason that a false diagnosis can have some really bad consequences). Also, I LOVE what you said here:

"On the contrary, experience working in a particular area, day after day, year after year, most usually results in the formation of biases based on the experience."

I can't believe what I'm reading. You're actually saying that experience is a bad thing. Perhaps this is why you seem to think that so many doctors don't know what they're talking about. When searching for a physician or psychologist you choose the one that has the least experience, so it's no wonder you've had some bad experiences.

I did not make any particular comment about medicine other than that some medicines have the potential to be more harmful than beneficial when given needlessly or inappropriately as a result of mis-diagnosis. This seems rather obvious to me.

For the rest I commented about people, some were people who happen to be doctors.


I know otherwise.

II do know of such cases.

Based on this definition of bias, I reiterate my earlier comments.

No I am not. The world is a complex place. Often things which are more beneficial than negative are not wholly beneficial, nor completely non-negative. To point out some less than positive implications of something is quite a different thing from suggesting that the something in question is "bad".

A number of others, including myself, have had doctors dismiss the idea that we might have ASD. In my case it was two PhDs, this Fall, at a major university autism center that studies and diagnoses children. They were not familiar with how ASD or PDD appear in adults and admitted as much to me. They suggested that I find a place that diagnoses adults. But after spending $$ on the non-diagnosis, I couldn't afford to go someplace else for a second opinion. Why did they dismiss a diagnosis for me? In their words, "Even though you had red flags for the three main areas of ASD when you were a child, your communication is too good to be diagnosed now." They also said that I am intellectually gifted. I asked if it is possible to learn to compensate for ASD difficulties. They said, "There is nothing in the literature that indicates individuals can compensate to the level of communication you have." I asked about the special interest that I have singularly pursued since the second grade. They said "You've been too successful to have ASD or PDD. Your difficulties are in no way related to ASD or PDD" In the end they said that I'm a socially anxious, panicky, and depressed smart guy. Their experience with diagnosing children is not a bad thing, but perhaps they should be more cautious in applying that experience to adults.

My psychotherapist disagrees with the autism center evaluation. She commented that I'm on the spectrum, but that I'm able to look out over the edge of it. The difficulty I have maneuvering through life with a degree of ASD wiring causes the social anxiety, panic, and depression.

There is only one study that I've found that looks at people who can be categorized as intellectually gifted as well as having Autism Spectrum Disorder. Called the Javits Twice-Exceptional Study, it will be published next year by the Belin-Blank Center at the University of Iowa. When I compare my psychological and IQ test results with the preliminary results of the Javits study, they match. Performance and Verbal IQ are high, but with a significant gap between the two. Working memory and processing speed are average. Communication, Daily Living Skills, and Socialization are the lowest scores. The only significant difference is, through 40+ years of trial and error and hard work, I've raised my Socialization score 33 percentage points above the average score of the 6 to 17 year-old students who participated in the study.

The reason that some are denied diagnosis is that there are too many variables when it comes to brain function, and all of the variables haven't been studied. There is still much work to do on how ASD behaviorally appears in discreet groups of people, and to what extent adults can compensate. Much like biology is re-classifying life forms based on genetics instead of appearance, in the future ASD diagnoses will most likely be based on brain function through imaging rather than stereotypical "autistic" behavioral traits that those with ASD may or may not overtly show.

Z

That wasn't them dismissing the idea though. They stated it was a possibility, but in their opinion your symptoms weren't clear enough to warrant diagnosis (even your psychotherapist said that you were on the borderline for not qualifying) nor were they knowledgeable enough to responsibly make a diagnosis. This is called being a competent professional. It would have been bad if they had diagnosed you considering everything they stated. A diagnosis is never just a few words on your record. It becomes a label that can affect your behavior. how you view yourself, and how others treat and view you. Furthermore, chronic diagnoses like AS will get you denied coverage by insurance companies. Honestly it's best to not go seeking an AS diagnosis as an adult unless you *need* treatment. If all you want to be diagnosed for is to say "I do have it after all" don't even bother, or at the most just bring it up with a psychologist you already see to get an unofficial diagnosis (ie one that won't go on your medical record).

You even admitted in your post that this is what they should have done when you said "Their experience with diagnosing children is not a bad thing, but perhaps they should be more cautious in applying that experience to adults". They were being cautious, hence the reason they didn't hand out a diagnosis.

Also, if a person isn't showing any of the behavioral signs of AS then do they really have the disorder? Sure, you may have the biology of an aspie, but if you aren't displaying the behavior then there's really nothing wrong.

As for pandd, I'd respond to your post but it looks like we're just starting to go around in circles now.

You misunderstand. They categorically said that what I experience is in no way related to ASD or PDD. I disagree with that assessment.

You might be interested in reading Shadow Syndromes: The Mild Forms of Major Mental Disorders That Sabotage Us. There is a section on ASD. I have been in contact with one of the authors who indicated to me there is a group of diagnosticians who have a "hardening of the constructs." It seems that in focusing on the deficits and difficulties that ASD can bring, these folks ignore and disregard those who don't have a stereotypical "presentation" of ASD traits. The author said that this rigidity of thinking is a "dehumanizing impediment to understanding."

And, the reason I have been exploring ASD is because of the developmental, social, emotional, and learning difficulties that I continue to experience. Neurological development and the Autism Spectrum explain the unique cluster that I experience better than anything else. ASD is still causing problems for me.

Z

I have aspergers

I was diagnosed in July.

Your stance here (and in the rest of your post) rather bothers me.

So far as I am concerned, my own, initial self-diagnosis is the only accurate one.

You seem to suggest that people should shy away from getting an official diagnosis. I would never say that. The more adult diagnoses, the better to prove that AS does not magically vanish when you leave school.

As for: " if you aren't displaying the behavior then there's really nothing wrong." There's just soooo much wrong with that statement.

Learning to present a 'normal' behavioral front does not mean that person has 'nothing wrong' or that they are therefore not autistic/AS. It's that kind of attitude which blocks people like us from getting the support we need. "Oh, he/she seems to act normally - therefore he/she doesn't need any support" can quickly turn into even "he/she acts normally - therefore he/she is simply making up his/her problems!". NOT the kind of attitude that's productive.

I'm saying that adults should shy away from diagnosis. The reason I say that is because with adults the damage is pretty much all done and there's not really much effective treatment to be had, at least nothing that you couldn't get for free by joining a social group or going out and forcing yourself to socialize. With children there are effective treatments that, when done early enough, decrease the severity of the symptoms and generally those treatments are only going to be available to kids diagnosed with the disorder. So for kids there's a benefit to getting diagnosed. For adults, however, there is little benefit but a lot of drawbacks. Also, I don't think the scientific community believes that AS magically vanishes after childhood since they're considered to be chronic disorders. Even your medical insurance company would agree with you that AS doesn't go away, hence the reason they'll be more than happy to deny you coverage after you get your diagnosis.

And I don't think there's anything wrong with my statement you quoted. Think about logically for a second. We're talking about a behavioral disorder. What does that mean? It means that the disorder's symptoms are all relegated to your behavior. If your behavior is fine and normal then you don't have the disorder, at least not at that point in time. Yes, you may have the biology of the disorder, and thus technically would have the disorder, but if you aren't showing any symptoms then there's nothing to diagnosis. Psychological disorders are not like medical illnesses, they don't require treatment if there are no symptoms (indeed they can't even be treated if a person isn't showing any symptoms). You can't diagnose a person with major depression if they've been happy and cheerful for years. You can't diagnose a person with schizophrenia if they've never had any delusions or hallucinations, even if looking at their brain makes it obvious that they have the brain of a schizophrenic. You can't diagnosis a person with AS if their only matching symptom is social awkwardness.

What you're suggesting we do, diagnose people with a disorder after a screening, is ridiculous. That's like saying we should diagnose people with cancer if they get a gene screening for it and it's found that they probably will develop it at some point in the future. While they may have everything in place for the condition, they still don't have it yet, and as a result there's nothing to diagnose or treat. It's just "well, you're probably going to want to stay mindful of the fact that this could very well pop-up in the future".



I'm not talking about people who merely learned how to present normally. I'm talking about people who are, in fact, normal.

I would argue that there is one distinct benefit for adults - peace of mind. Knowing at last that your problems stem from a recognized condition, and that you're not simply crazy. Knowing, after years of blaming yourself and thinking, "Should I have just tried harder at doing X and Y? Was I just stupid/lazy?" that none of it was your fault.

Actually I think that adults getting diagnosed benefits everybody who comes later down the road as it provides the professionals with experience (sorely needef) dealing with all age ranges of the condition. Most doctors have never even talked to an adult with the condition so they have no idea what we're like or what we think or what we do.

Others have mentioned benefits and I will add to them. A main benefit to being diagnosed is validation that there are neurological reasons for difficulties that we experience. That validation brings peace-of-mind as well as (hopefully) empathy from others who either understand or can assist us in maneuvering through what is often an uncomfortable and stress-producing world of people.

Validation and understanding can also lead to being able to make positive decisions on where to go from here. I'm in my 40s and had no idea why I have struggled as much as I have until someone described Asperger's to me and I immediately saw a similar pattern in my family and in myself. I'm tall, good-looking, and have had a successful career in my "special area of interest." But I also recently quit my job because the pressure of dealing with people left me with social phobia, panic, and depleted focus. I've never been married and I live with my mom. So I can either think of myself as an unemployed relationship avoidant looser, or I can proactively search for answers as to why I am the way I am.

I have been diagnosed with social anxiety, panic, and low grade depression, but I don't accept that those are explanations for what I experience. I see them as unfortunate but not necessarily inevitable side effects of having brain wiring that is categorized as "on the spectrum."



ASDs are primarily behavioral disorders/differences, not solely behavioral disorders/differences. If you spend enough time on WP or read a few of the many books on ASDs, you will find related symptoms that have nothing to do with behavior. Some people have neurological and physical sensitivities, allergies, learning difficulties, etc. that are common to those on the Autism Spectrum. Even though the Diagnostic and Statistical Manual has narrowed the main autism criteria to a few main and mostly behavioral characteristics, ASDs aren't that neat and tidy.

Z

I didn't realise how off-track you were.

I disagree.

What damage?
Waffle.

Treatments for symptoms... no. Treatments for comorbids, yes. Methods of concealing/internalising symptoms, yes. The symptoms don't actually go away. The person become better able to control them, and less likely to exhibit them as behaviour.

but of course
I disagree.
Why introduce this statement, inaccurate as it is. The support vanishes.
I don't have medical insurance. I live in a civilised country. I do feel sorry for the woeful lack of medicine suffered by people in America.
Yes. That's immoral, of course, but good business practice, for the insurance companies - they don't want to actually risk paying out, do they?

I do.
No. We are not. We are talking about a neurological difference that is currently diagnosed by a syndrome of behaviours.

I've no idea what this sentence is intended to suggest.

No. If you do no overtly display sufficient of the symptoms, it may be more difficult to obtain a correct diagnosis. The current means of diagnosis is only effective up to the point where an autistic succeeds in concealing those behaviours that are used for the diagnosis.

Wrong.
Which is not what we are talking about. We are talking about a neurological difference.
None of the above is relevant, as we are not talking about psychological disorders.

You must be talking to someone else at this point, as I made no such suggestion.

See above.

So, I guess that is the end of any possible discussion, if you are stating that AS is all in the mind/behaviour, and not neurological?