Mentioned Asperger's/Autism to Doctor...

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ezbzbfcg2
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11 May 2021, 1:41 am

I went to see the doctor about a month ago for a physical. Hadn't been since 2019. 2020 physical was cancelled due to COVID.

The doctor's office is a group practice attached to a university hospital and has a revolving door of resident doctors. So, for my physical, this doctor barley saw me; instead he had a doctor-in-training do most of the work. (Technically, they're both still doctors-in-training). The main doctor then determined my blood pressure was high and the solution was a month's worth of diuretics / water pills (HCTZ pills).

I took the pills for two weeks, didn't like them, and stopped. I figured I'd tell the doctor when I saw him again.

Okay, so monthly follow-up:
Nurse checked my blood pressure and it was fine. I think diuretics are essential for people who have persistent catastrophically high blood pressure. In my case, I think it was a hyper-correction. People who NEED diuretics are on them every day for life. I went 2 weeks without taking them and no problems. Unless all I needed was 2 weeks worth to bring my blood pressure down.

REGARDLESS - MAIN POINT: I went for the follow-up and it was just the main doctor this time. At first, he didn't even recognize me. Anyway, I inquired about Asperger's/Autism (I used BOTH terms). I told him I'd never been diagnosed, but have been aware of it for over 15 years and how I can relate.

He said, "You can't have Asperger's, you have a job. You make eye contact. If you have Asperger's, it would have been caught years ago."

I told him there are plenty of people with Asperger's/Autism who hold jobs, make eye contact, don't get diagnosed until later in life.

He said, "But you seemed fine a month ago," even though he didn't even recognize me at first this time, and had an assistant doctor ask most of the questions last time.

I know he's not a shrink, he himself can't diagnose me, but I told him I often have interpersonal problems with people, it makes me anxious sometimes. I worry about future interactions with people, as they tend to be less favorable for me than the average person. He said I was being paranoid, which, in his mind, ultimately meant schizophrenia. I told him I don't have any hallucinations or delusions, but he wanted to prescribe my an antipsychotic. I refused. This was the same clown who prescribed me a diuretic when my blood pressure was just a little too high that particular day. I don't want to go on some medicine that could make me worse, especially prescribed by someone who *had an idea of what Autism is* but had the wrong idea.

To him, it seems, Asperger's/Autism = CLASSIC Autism
Anxiety and paranoia about social situations = Schizophrenia

It's frustrating because I feel I can't trust a medical professional. And even if I don't have Asperger's, his generalizations about Asperger's were patently false.

I know this is the Haven, but feel free to respond however you see fit. I wanted to share this. Frustrating.



ezbzbfcg2
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11 May 2021, 1:43 am

Also, I'm not opposed to medication in general, just don't want to be prescribed something I don't need, and felt this guy couldn't be trusted with the RX notepad.



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11 May 2021, 4:09 am

ezbzbfcg2 wrote:
I know he's not a shrink, he himself can't diagnose me, but I told him I often have interpersonal problems with people, it makes me anxious sometimes. I worry about future interactions with people, as they tend to be less favorable for me than the average person. He said I was being paranoid, which, in his mind, ultimately meant schizophrenia. I told him I don't have any hallucinations or delusions, but he wanted to prescribe my an antipsychotic. I refused. This was the same clown who prescribed me a diuretic when my blood pressure was just a little too high that particular day. I don't want to go on some medicine that could make me worse, especially prescribed by someone who *had an idea of what Autism is* but had the wrong idea.

To him, it seems, Asperger's/Autism = CLASSIC Autism
Anxiety and paranoia about social situations = Schizophrenia

It's frustrating because I feel I can't trust a medical professional. And even if I don't have Asperger's, his generalizations about Asperger's were patently false.

If you can afford it, and if you don't have a problem with doing tele-health via Zoom, you might want to look into GRASP's Autism Assessment Service. GRASP is a nonprofit organization that has been around for almost two decades. Recently they've put together a network of psychotherapists who are qualified to diagnose ASD. This service is not covered by insurance, alas, but it costs less than an ASD evaluation typically does.

Unfortunately, at least some of the other providers I'm aware of who were doing adult autism evaluations before the pandemic have simply stopped doing them until after the pandemic is over with, so they have a humongous waiting list.

Whoever you get your diagnosis from, you should probably ask for a referral to an autism-aware psychiatrist as well, so if anyone ever again tries to prescribe you anti-psychotics, you can get a better-informed second opinion.

I'm also wondering if there's someplace you should report the guy who tried to prescribe you anti-psychotics. Technically he might be legally allowed to do so, but he really shouldn't, given that he's not a psychiatrist.


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11 May 2021, 11:05 am

I've been most successful with doctors when I assert from the start that I will be an equal (or even senior) partner in my health care decisions. Oh, that and not having a rotating crew of novices. In short, the primary care relationship isi very important in patients getting the right type of care, and that relationship is what you make it be. Obviously, it takes two to tango, so you keep shopping until you find someone you can work with them, and then stay with them.

OP, do you have any other options on your health insurance where you can see the same person year after year?


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kraftiekortie
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11 May 2021, 11:12 am

This doctor seems like he/she prescribes antipsychotics like candy.

Get away from this doctor.

Antipsychotics are not like aspirin, Tylenol, or whatever. They are serious drugs.



kitesandtrainsandcats
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11 May 2021, 11:18 am

ezbzbfcg2 wrote:
It's frustrating because I feel I can't trust a medical professional. And even if I don't have Asperger's, his generalizations about Asperger's were patently false. ... Frustrating.


Indeed it would be frustrating.
And disappointing.
And a number of other things.

Well, remember, though it sometimes seems not, doctors are human beings,
and just like some human beings are not to be trusted, some doctors are not to be trusted.

I'm with Kraftie and Bea, looks like time to find another doctor.

I've had to do that a couple times.
Didn't like going through it.
Did like the doctors which were found.


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ezbzbfcg2
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11 May 2021, 1:02 pm

Thanks for the replies. As far as finding a new doctor, or practice in general, I agree. I went with this practice about 8 years ago because it was attached to a hospital. (Essentially, I see a new doctor every year or so at this same location.) I figured it would be above-and-beyond a regular doctor's office, but now see it's mostly a boot camp for doctors-in-training.

I'll have to wait until next year to find a new doctor though; as far as insurance is concerned, I've had my yearly physical, can't start anew until 2022.

I asked the doctor flat-out what kind of drug it was, like a benzo or SSRI. It was only then he said antipsychotic and every bone in my body told me it was a terrible mistake and refused them. But, of course, his diuretic pills I feel were a major mistake, but I took them out of faith that he knew what he was doing. Again, maybe the two weeks I took them helped, but further research show diuretics are designed for long-term use for people with SUPER high BP. Mine was a little over the limit that day, and he rushed to make a diagnosis and prescribe pills.

The main take-away isn't so much the meds, it was his ignorance of Autism. Not just ignorance. If he had no idea, I'd be more forgiving. Rather, he had an IDEA in his head and determined on the spot it wasn't possible for me to even possibly be autistic, while simultaneously deciding I must be schizophrenic. How any doctor could diagnose someone with either (or deem they don't have it) after only 10 minutes is mindblowing and scary.

It's like he was following a textbook: Blood Pressure range is over X, prescribe water pills.
Patient seems anxious and a little paranoid, assume schizophrenia and prescribe antipsychotics.

I know doctors are human, but this was really snap judgement. I looked up schizophrenia. It's "positive" (manifesting) outward symptoms are things like hallucinations, delusions, incoherence in speech. I don't have those things, and he didn't see enough of me to determine whether I had those things. The "negative" or internal effects are things like paranoia, anxiety, withdrawal (which can also apply to a myriad of things, not only to Aspies, but to someone mourning a loved one. Can't make a diagnosis based on "negative" traits.)

Unless he's saying all of my social struggles with NTs that I was alluding to are purely a delusion and imaginary on my part because I seemed "normal" to him...which is very insulting. I wouldn't care if some random Joe had that opinion, but to see it from a doctor is disheartening.

And even if I don't have Asperger's in the end, no one should dismiss the possibility based on a limited first impression, IMO.

Many people here talk of friends and loved ones saying things like, "You can't be Autistic, you can dress yourself and string a sentence together! Austism is Rain Man." To hear it from a doctor...not simply ignorance but actual erroneousness, is disheartening.

I want an accurate diagnosis. And, yes, I am a bit paranoid. Paranoid a doctor will dismiss me or misdiagnose me based on his own limited understanding. What to do?



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11 May 2021, 1:17 pm

General practice doctors/physicians are basically low level mechanics who's job is to do routine checks and maintenance. It's pointless to expect them to have any idea about something beyond that.

Since health became my interest I found out majority of doctors have a lot of knowledge in terms of some insignificant details in their field, but just as little as understanding of health, how the whole system works as general public. They are not stupid, healthcare system, pharmaceutical industry and medical education are fundamentally flawed. Health of a patient is never a real priority at any stage.



kitesandtrainsandcats
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11 May 2021, 1:19 pm

ezbzbfcg2 wrote:
The main take-away isn't so much the meds, it was his ignorance of Autism. Not just ignorance. If he had no idea, I'd be more forgiving. Rather, he had an IDEA in his head and determined on the spot it wasn't possible for me to even possibly be autistic, while simultaneously deciding I must be schizophrenic. How any doctor could diagnose someone with either (or deem they don't have it) after only 10 minutes is mindblowing and scary.

It's like he was following a textbook: Blood Pressure range is over X, prescribe water pills.
Patient seems anxious and a little paranoid, assume schizophrenia and prescribe antipsychotics.


Indeed it is scary.

And I kind of want to say, what else can they do but follow the textbook, there are so many diseases with so many variables, and then those so many diseases with so many variables get mixed with so many humans with so many individual variables, it sometimes strikes me as a miracle anyone can ever diagnose anything.

But ...

If that doctor's view of autism is what is in the text book ... Houston, we have a problem.
And it's a big one.

Quote:
I want an accurate diagnosis. And, yes, I am a bit paranoid. Paranoid a doctor will dismiss me or misdiagnose me based on his own limited understanding. What to do?


Yes, though a diagnosis does not solve the problem, it lets me know what I'm working with, and that goes a long way itself.

That paranoia about dismissal and/or misdiagnosis is a legit fear, there are a lot of us in the chronic illness, incurable illness, autoimmune disease, communities who did or still are living through it.

What to do?
Only thing I can offer is encouragement to keep swimming against the tide on this epic quest to get safe and accurate health care.
And then offer commentary that it shouldn't have to be an epic quest.
But it is, and that is the effect of the causes.


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ezbzbfcg2
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11 May 2021, 1:49 pm

badRobot wrote:
General practice doctors/physicians are basically low level mechanics who's job is to do routine checks and maintenance. It's pointless to expect them to have any idea about something beyond that.

Since health became my interest I found out majority of doctors have a lot of knowledge in terms of some insignificant details in their field, but just as little as understanding of health, how the whole system works as general public. They are not stupid, healthcare system, pharmaceutical industry and medical education are fundamentally flawed. Health of a patient is never a real priority at any stage.


Even before this incident, I've felt modern medicine is great for obvious PHYSICAL problems. In regards to mental health, we're still very much in the days of leeches for bloodletting.

Good analogy with the general mechanic vs. general physician.

It's almost like if you had a rare, specialty car. And you happened to find a general mechanic whose brother also owned that rare, specialty car. He might not be an expert, but he'd also be more understanding than his fellow mechanics as to what unique problems that unique car might have. Otherwise, it's guesswork by-the-book. Perhaps if this doctor knew more about Autism from personal experience, he'd be more understanding. As it stands, it was a little too judgmental.

I don't think he's stupid by any means. Moreso ignorant and quick to make a diagnosis on the spot based on ignorance. I think that's where the problem lies. Maybe doctors, ideally, should be more humble and say, "I want to help, not 100% sure, here's what knowledge I have and what my opinion is," as opposed to "I'm the expert because I went to school for it, I know what I'm doing, you know nothing. Have blind faith in me."

In a way, doctors behave like unquestionable priests in the sanctified healthcare system/pharmaceutical industry/medical education church, treating their interpretation of their textbook like the infallible word of God.



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11 May 2021, 1:52 pm

Doctors are educated, not necessarily smart or correct. You're right, it sounds as if the doctor has a very small amount of outdated information and is working from there. Changing doctors would seem like a good idea.

The observation that they might have been thinking of Kanner's Autism (severity 2 or 3?) seems plausible.

There are quite a few examples on WP of folk who got a diagnosis late in life. The doctor is wrong about that. I got my diagnosis at age 64 and there are others here who were even older when they got their's.

There are also examples of folk on WP who hold jobs. The doctor is wrong about that. I did and have the pensions to prove it. (And, with hindsight, a better understanding of why I was often so unhappy.)

When you change doctors, AASPIRE's web page might interest you, especially: "How Autism Can Affect Healthcare". Though the most important thing in there, for me, is wanting to get stuff in writing--I was asking for that before I knew I was on the Spectrum and seldom got it, and now I share "How Autism Can Affect Healthcare" and still seldom get stuff in writing.


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ezbzbfcg2
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11 May 2021, 1:53 pm

kitesandtrainsandcats wrote:
Yes, though a diagnosis does not solve the problem, it lets me know what I'm working with, and that goes a long way itself.

That paranoia about dismissal and/or misdiagnosis is a legit fear, there are a lot of us in the chronic illness, incurable illness, autoimmune disease, communities who did or still are living through it.


Were you diagnosed as an adult? If so, what led to the diagnosis.

I feel like a lot of the adults who were diagnosed got their diagnosis by accident. Like, they were talking to a doctor or shrink about general problems, and the good doctor had the wherewithal to recognize and diagnose them with Asperger's/Autism, or refer them to another doctor who could. Many adult diagnoses got there with a little bit of luck, so it seems.



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11 May 2021, 2:01 pm

Double Retired wrote:
There are quite a few examples on WP of folk who got a diagnosis late in life. The doctor is wrong about that. I got my diagnosis at age 64 and there are others here who were even older when they got their's.

Thanks for the links. What led to your diagnosis? Did you seek it out, or did an adept doctor spot it?



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11 May 2021, 2:19 pm

Oh man. I'm sorry this has happened for you. You must feel very frustrated and invalidated, to say the least. I hope you can find a new doctor eventually because even if you aren't autistic, he shouldn't be making snap judgements or pushing medications that you don't want.

It's very common for general physicians or even some mental health professionals to misunderstand autism. It's shameful, but happens all the time. When I first asked my Psychologist (an old man with a PhD in Trauma / Holocaust victims), he said that I couldn't be autistic because I didn't flap my arms like a bird or walk in circles. He said autism was for little boys. I was pretty shocked by that given his level of expertise in Psychology and my great esteem for him, but I understand that his autism education was very limited / outdated. I asked my trauma psychiatrist who is a younger woman only a few years into practice. She said that I was "too articulate" to be autistic. This, despite the fact I have degrees in English (I know big words), and I spent most of our sessions entirely mute without eye contact or relative social ease.

Long story short but I referred myself for assessment without asking my GP. I didn't want to wait any longer. I contacted my University's neuropsych department and was put on a short wait list of approx 5 months, for a woman with a PhD specialising in adult ASD identification. She was eager to see me and I had a thorough assessment which concluded I am Level 2 with significant support needs. I've posted bits of my report here before. I gave the report to my GP as well as both of those other doctors to show their error in judgement.

Please don't let the turkeys get you down. Try and try again until you're treated with respect!



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11 May 2021, 6:01 pm

ezbzbfcg2 wrote:
Double Retired wrote:
There are quite a few examples on WP of folk who got a diagnosis late in life. The doctor is wrong about that. I got my diagnosis at age 64 and there are others here who were even older when they got their's.

Thanks for the links. What led to your diagnosis? Did you seek it out, or did an adept doctor spot it?
No doctor ever suggested it to me and I'm certain no doctor ever suggested it to my parents (Asperger's was added to the DSM in 1994--the year I turned 40). In 2012 my suspicion that I might be medically different was strong enough I expressed my suspicions to my Primary Care Physician--but we learned nothing and neither my suspicions nor his response went anywhere near Asperger's or Autism. (I knew so little about it at that point I would've rejected it if someone had suggested it!)

In 2018 Reality decided to drop me a hint.

My still-alive-and-quite-old Dad lives a little over 700 miles (a little over 1100 km) from us. One of my sisters lives near him and works as a nanny for special-needs children. Sometime during 2018 she had one of the kids with her on a visit to Dad. Later, around New Year's Day 2019, I learned that Dad several times said something along the lines of that kid was doing the same kinds of "weird" things I used to do.

I have not been able to get a clear report as to what the weird things were but I must have made quite an impression on Dad because I was that kid's age during the Eisenhower administration!

When I was told about this I probably got a strange look on my face as I remembered my sister had mentioned that kid and that there were suspicions he might "have" Autism.

Even though I didn't expect it to come to anything I started reading about the Autism Spectrum on the Internet. And I recognized myself! Then I got my bride to read up on it and she agreed with me, there were indications I might be a "High Functioning Autistic". Then I found and took the Autism-Spectrum Quotient Test and it said my score (40) was in the range that indicated "significant Autistic traits (Autism)".

Still nothing definitive. At this point I believed I was likely somewhere near the "low" end of the Autism Spectrum but I didn't know whether I was almost on the Spectrum or barely on the Spectrum. That's when I began seeking an Adult Autism Assessment.

Which ended with the diagnosis that I met the criteria for a diagnosis of Autism Spectrum Disorder, Level 1 (Mild). The psychologist further noted that I displayed many of the qualities of individuals diagnosed with high functioning ASD, or "what was previously known as Asperger's Syndrome."

And that revelation explained so much!! !


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13 May 2021, 12:42 pm

Good choice you refused to take antipsichotics! They made a vegetable of me when I was misdiagnosed.
Antipsychotics can be a salvation for psychotic patients but they can very seriously harm others.
I didn't have any idea about me and AS back then, I was just experiencing something really distressing with my mental health and ended up at a psychiatrist who, apparently, believed every severe mental illness was some kind of schizophrenia :/


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