The Way I See It: I have a terrible time communicating. Is it because I’m autistic?

Subtitle 1: Caveat: This only seems to occur when I’m trying to communicate my health issues to doctors.

Subtitle 2: My hypothesis is that most doctors do not expect the scientific dribble coming out of a patient’s mouth (mine).

Subtitle 3: Conclusion: The doctors referenced above think that they are dealing with some crazy old fool! 🙂

Subtitle 4: Introduction to ‘AusTalk’

I’ve written a couple of previous posts/op-ed’s on the importance of being one’s own Patient Advocate.

That concept is about empowering one’s self with enough medical jargon and information with the purpose of having a condensed conversation with a medical scientist, aka Doctor, in order to mutually figure out what one’s health issues might be caused by.

Why? Simple, to live a little longer with a reasonable quality of life and unfortunately most doctor’s appointments are quite brief.

I’ve been hitting a brick wall for over sixteen (16) years with doctors attempting to fine tune this approach, and I’m scratching my mostly bald head right now thinking about my failure in this process.

I have an autistic brain, and my autistic brain likes to deal in logic, facts, and reasonable conclusions based on verifiable previous research and information. This approach is sometimes referred to as ‘The Scientific Method’.

When I communicate with a doctor in the allocated twenty (20) minute consultation appointment, I generally go prepared with an agenda and bullet points to go over.

I’ve tried two different models of agendas, generic and technical. So far neither has proved to be a successful method of communicating complex health issues to qualified medical professionals.

Am I speaking in a different language?

Yes! It’s called ‘AusTalk’.

‘AusTalk’ in theory is an efficient communication language, analogous to ‘C’ Language in computer programming.

As an example, if you want to tell the computer to shut down (turn off), the ‘C’ Language code in UNIX to do this function looks like this:

#include <stdio.h>

int main() {
system(“shutdown -P now”);
return 0;

The idea for ‘AusTalk’ to work is to cram as much information and data into a set of algorithms (doctors’ heads) and expect a reasonable answer (diagnosis) based on a set of rules (established medical facts and related symptoms).

‘AusTalk’ in theory works like the ‘C’ programming language, and could be effective depending on several criteria.

1) The model of computer (Doctor)
2) The correct microprocessor and subprograms to process the data (Medical Specialty)
3) A robust database (knowledge and experience) to run the data (symptoms) against
4) And a set of rules (medical labels (diagnoses) and correlating criteria (paraclinical data (lab reports, X-rays, MRI’s, etc.))))

The reason that I keep trying to perfect ‘AusTalk’ when communicating with a doctor is the programming variable of ‘time’.

It is quite challenging for this old fool (me) to cram forty-five (45) years of symptoms into a twenty (20) minute doctor’s appointment and expect the computer (Doctor) to spit out a result!

I’m a living, breathing, biological computer just like you are and the medical professionals referenced.

The difference is that each of us use a ‘different operating system’ to communicate called ‘life experiences and stored memories’.

Those tidbits of intertwined data are extraordinarily powerful for one personally, and if we figure out a way to communicate those succinctly they can be the puzzle pieces to solve a complex problem.

And the last important concept of ‘AusTalk’ while functioning as your own Patient Advocate is using what is referred to as the ‘Team Approach’.

The ‘Team Approach’ is very simple. It requires a ‘Team Leader’ (TL), a set of ‘Team Players’ (TP), a ‘Project Objective’ (PO), a ‘Project Plan’ (PP), and apply the variable (THK).

(TL) = Patient
(TP) = Doctors
(PO) = Diagnose health issues
(PP) = Use clinical and paraclinical data together, and not independently.
(THK) = Thinking [Stop, Look, Listen, and Think before Reacting and Spitting out an incorrect answer]

One of my favorite authors, scientists, and thinkers is a man named Dr. Darold A. Treffert, ‘Islands of Genius: The Bountiful Mind of the Autistic, Acquired, and Sudden Savant’, who also wrote the introduction to another one of my favorite books, ‘Scholars With Autism Achieving Dreams’ by Dr. Temple Grandin and Valerie Paradiz.

In that introduction titled ‘Oval Souls on a Round Planet’, Dr. Treffert made a very profound statement that should be added to the current version of the Hippocratic Oath that doctors swear by when they graduate from medical school:

“Listen to the patient, he’s giving you the diagnosis” and “Never tell the patient there is no hope.”

[To be continued…]

How long does it take you to get a doctor’s appointment?

I live in Mexico, about an hour and twenty minutes south of the border with San Diego, CA.

I use two US medical systems, private healthcare and the Veterans Administration Healthcare System (VA). I also use the Mexico medical system, basically paying up front to see a doctor out of pocket.

On average, it takes me at least two (2) months to get an appointment with either my US primary care physician or a US medical specialist such as a rheumatologist. It usually takes me longer than that to see a doctor at the VA, and it’s next to impossible to see a specialist at the VA unless some lab report comes back with a major red flag or you’re near death. 🙂

Since I’m on Medicare due to being disabled, I’ve been using what they call the Medicare Advantage Program for the last five years. That program is basically an HMO type process that does have some perks, but also has a lot of downsides. My co-pay for seeing my primary care physician is $15.00 and if I’m referred to see a specialist such as a rheumatologist my co-pay is $35.00.

Over the last sixteen years, I’ve been seeing a lot of neurologists for what I thought I had, Multiple Sclerosis (MS). In October, I figured out that I probably have primary Lupus and secondary Sjogren’s Syndrome and subsequently I’ve seen two rheumatologists, one in the US and one in Mexico.

They have differing opinions from one another. The US doctor brushed me off as not being ill with anything and the Mexican doctor determined that I probably do have primary Lupus and secondary Sjogren’s Syndrome. My lab tests are the issue. I saw them both twice, a total of thirty-five (35) minutes with the US doctor, and a total of five (5) hours with the Mexican doctor.

I’m a big believer in second and third opinions, so I decided to see a third rheumatologist to get an additional opinion.

I found what appears to be a really knowledgeable rheumatologist in Tijuana, Mexico at a very prestigious private hospital. I did a lot of research on this individual, and it’s impressive.

The title of this post is “How long does it take you to get a doctor’s appointment?” I should have added, “How much does it cost you to finally see that doctor?”

I called the office of the Tijuana rheumatologist this morning and asked to make an appointment. The receptionist asked me when would I like to come in and my response was “next week.”

My appointment with this doctor is at 11:30 AM this coming Monday, January 4th.

I suspect the fee to see this doctor the first time will be the usual which is mandated by the federal government of Mexico. The usual fee for the first visit is $700 MXN pesos and subsequent visits are $500 MXN pesos.

At this very moment in time with the US dollar to Mexican peso exchange rate, that equates to $41.00 for the first visit and $30.00 for the second visit.

The co-pay for the US rheumatologist was $35.00 times two which equals $70.00, and that was for a total of thirty-five (35) minutes of not much help nor advice.

Oops! I made a boo-boo!

That US rheumatologist (she) did give me some advice. She told me to go see someone else and recommended that I spend $30,000.00 to get a thorough evaluation at the Mayo Clinic in Arizona…



“Is there anything good about being autistic?”

This was a post in one of the autism related Facebook (FB) support groups that I belong to.

My response, “Yes Dorothy there is…” [from The Wizard of Oz]

The FB group member that posted the question referenced above may have been distraught or maybe was just trying to stir up a little controversy.

Everyone that is autistic has the right to their own emotions about being autistic, whether good or bad. Even parents have the right to their feelings when caring for an autistic child.

The question is subjective but my answer when thinking about my own autistic traits is, “yes, there are plenty of good things about being autistic.”

My personal list is long in the positive column, but my favorite three autistic traits are 1) my logical way of thinking and solving problems, 2) my innate need to be truthful, and 3) my sometimes over-the-top obsessive compulsive behavior (OCD).

Are you scratching your head yet? [regarding #3]

A couple of months ago, I figured out that my autistic comorbid autoimmune disease is not Multiple Sclerosis (MS) but a combination of two other ones that manifest similar symptoms, primary Lupus and secondary Sjogren’s Syndrome.

I’ve already posted about this discovery so I’ll get to the point. And the point is that I am very thankful for my autistic comorbid OCD trait.

Over the past two months, I have spent on average five (5) hours a day researching and learning everything possible about those “other” comorbid autoimmune diseases. I even started a new Facebook pseudo-blog titled ‘The Lupus Guy’.

Why do you think that I did that? [pause and think]

The answer is complicated but the simple part is the US medical system which I do take advantage of even though I live in Mexico.

Recently I’ve posted a few times about being one’s own Patient Advocate on my Facebook pseudo-blog, ‘Autism from an autistic perspective’. I suspect that most regular individuals trust and rely on their doctor’s assessment and advice about their health.

I used to but not anymore. It’s not that they don’t want to help their patients, it’s because they do not have the ‘time’ to sufficiently analyze and diagnose a complicated medical problem.

The standard doctor’s appointment slot is twenty (20) minutes whether you are seeing your primary care physician or a medical specialist.

That’s the new paradigm of the US medical system because medical care in the US is really expensive. The more patients that you move through the ‘medical office conveyor belt’, the better the chances are of breaking even in overall operating costs to run a medical practice or a hospital.

If you (the patient) have a dozen symptoms that could be attributed to a variety of different illnesses, and those illnesses could relate to etiologies (causes) that are neurologic, rheumatic, cardiac, or dermatologic, do you think a really smart human being (doctor) could problem solve and diagnose that in twenty (20) minutes?

[pause and think]

It’s an easy answer and the answer is “No, they cannot, period.”

However, the doctors have a workaround approach to mitigate the limited time allocated to arrive at a diagnostic conclusion, and it’s called a “Paraclinical Diagnosis”.

In essence, the doctors in the US generally rely on lab reports, x-rays, MRI’s, and other diagnostic tools to do their job for them because they do not have the ‘time’ to sift through your medical history and conduct research for a differential diagnosis (a set of overlapping diseases that share similar symptoms).

The old fashion technique was called a “Clinical Diagnosis”. If you’re old like me, you probably had a GP (General Practicioner) that managed your health from the time you were born until you left home. The old fashion GP doctor was trained and skilled in all sorts of medical areas, and usually spent the ‘time’ to figure out what was going on with their patient.

Those days are gone and cheap lab reports are the “in thing”.

Consequently, today’s modern doctor has learned how to be a really good interpreter of lab reports and a pseudo-expert in genetics. That’s their method for inserting a Diagnostic Code in your medical records in order to bill either your private insurance carrier or Medicare (US).

As a result, I decided a long time ago to become a pseudo-doctor and my own personal Patient Advocate. It’s a lot of work but it’s been really interesting, and unfortunately really necessary.

[if you’re still with me on this one…]

My obsession with learning everything possible about two complicated autoimmune diseases in a short timespan is directly related to me being autistic, period.

I have fused together the autistic traits of Obsessive Compulsive Disorder (OCD), logical thinking, detail oriented, pattern thinking, visual thinking, exceptional memory and recollection of details, determination to seek the truth, objective analysis and judgement, and most importantly “original perspective on problem solving.”

“So yes Dorothy, there are lots of positive things about being autistic. And I hope that I have made my point…” 🙂

[if not, please read the attached graphic carefully]


Is it Lupus, Sjogren’s Syndrome or what?

In my About introduction, I mentioned that I have Lupus and Sjogren’s Syndrome. And then I followed that statement with “[I think]”.

I hedged that statement a bit due to the complexity of diagnosing a plethora of symptoms.

I had my first major flare-up in the summer of 1999. I was living in San Francisco at the time and it was an unusually hot day in the upper 80’s.

I took my dog for a long walk wearing shorts, a t-shirt,  flip flops, and sunglasses. I wasn’t wearing a hat nor was I wearing any type of sun block.

We were about a mile from my apartment and I suddenly got very dizzy (vertigo) and I thought that I was going to faint. I didn’t but that dizziness lasted for about a minute.

We immediately made a u-turn and went home.

Over the next few days I started getting worse. The dizziness came back but not to the point of feeling like I was going to faint. My coordination both in walking and trying to use my hands and arms became unsteady, so I immediately went to see my primary care physician at Kaiser Permanente.

He suspected an ear infection and I think he gave me some antibiotics but I don’t remember.

A few days later I was getting worse and I went back to see him. I mentioned that Multiple Sclerosis (MS) runs in my family and we both thought that the symptoms might be MS related so he put in a referral for me to see a neurologist.

That was June of 1999. I finally saw the neurologist about six weeks later. In the interim, I kept getting worse to the point of needing to use a cane to walk.

By the time that I saw the neurologist, the symptoms had diminshed substantially but he did order an MRI of the brain. A few days after the MRI, I got a call to come back for another MRI. When I went in for that one, the technician told me that they were having problems with the equipment. [red flag alert]

Around 8:00 p.m. on the night of the second MRI I got a call from the neurologist telling me that I had two small ruptured discs in my neck and I needed immediate surgery or I might become quadraplegic! Yikes!

Prior to that call I was pretty sure that I did have MS because the symptoms reminded me of what my aunt and cousin went through. Therefore I was relieved that it was something else. [red flag alert]

A few days later I had a double discectomy by a very good neurosurgeon at the Kaiser Permanente hospital in Palo Alto. He told me that I’d be fine in a few months after recovering from the surgery, and that I could return to my usual sports activities of skiing, running, roller blading, etc.

He was right! The surgery was in the first week of August of 1999 and by October I felt good as new!

In November my right side became weak and ocassionally I would need to get that cane out of the closet. [red flag alert]

The following May of 2000, I had a second flare-up and a second neck surgery a month later. [red flag alert]

[Fast forward]

Subsequent to my second flare-up, I’ve received a variety of diagnoses for my symptoms from Fibromyalgia to Conversion Disorder, but one diagnosis that made sense stuck, Multiple Sclerosis (MS).

Over the last sixteen years, I have seen close to two dozen neurologists and five of those neurologists specialized in MS. Four of the five specialists said that I had MS and the others said “no, you do not.” [red flag alert]

The naysayers offered no alternative diagnosis other than Conversion Disorder or residual effects from the neck surgery in 1999.

Furthermore, none of the naysayers ever suspected that I might be dealing with “The Great Imitator” also called Lupus nor did they refer me to a rheumatologist for an evaluation. [red flag alert]

This very long post with the introduction to my healthcare saga is posted in Patient Advocate 101.

What I left out above is that as a scientist, I did conduct a thorough research on Multiple Sclerosis (MS) mimics very early on in the course of my ill health since none of the neurologists travelled that path.

However, I really screwed up! [red flag alert]

Somehow I missed the sentence or paragraph that mentions Lupus can put someone in a wheelchair; I have a wheelchair and a few other tools to aid in mobility when needed.

In an era when there are too few doctors for too many people, and the protocol is to spend no more than twenty (20) minutes with a patient, it is somewhat challenging to problem solve a complex illness.

Consequently, when a person may be dealing with a serious health issue that is not easily diagnosable, they need to become their own Patient Advocate, and definitely get a second and third opinion when they do get a formal diagnosis.

In the subsequent posts, I will share the tools and the methods that I have used to be my own Patient Advocate.

[To be continued…]