Autism 2015, a year in review

Happy New Year!

I’ve lost count on the potential causes of autism because they pop up daily.

One that resonated with me over the past year was the discovery that mothers with Lupus are very likely to have an autistic child.

The reason that one resonated with me is because I’m autistic, I appear to have Lupus, and I realized that what my mother referred to as her “eczema” was probably Discoid Lupus or Subacute Cutaneous Lupus.

That made sense to me.

This morning, the first day of 2016, I received my daily Google Alert list of autism articles and one caught my attention.

It’s by a very good writer, Emily Willingham, who writes about autism and publishes in the Forbes magazine.

This particular article was criticizing Malcolm Gladwell’s remarks about the link of autistic men and child pornography.

I’m an autistic man but I’m not into child pornography, and the thought of that disgusts me.

The connection does have some scientific merit on the surface if one considers that many autistic individuals have Emotional IQ’s (EQ) much younger than their physical ages.

As a scientist, I’ve concluded that my Emotional IQ fluctuates between 13 and 18 years old most of the time. All that means is that I am super naive and I assume that everyone is telling me the truth; at least until they prove otherwise.

The article referenced autistic men with Emotional IQ’s of around 10 years old, and the hypothesis is that those men were sexually interested in children of around the same age.

I’ve done some research in the past on childhood sexual abuse and what I synthesized is that the majority of adult sexual abusers were more into ‘power’ over their victims than attempting to have an ‘intimate relationship’ with them.

That makes sense to me.

Furthermore, if one analyzes the average sexual awakening in a young boy, it’s usually around the age of 13 when they reach puberty. And when that happens, assuming it is a heterosexual boy, he’s generally interested in big boobs of older women, not flat chested little girls! 🙂

Consequently, I think the above premise should have been raised when psychoanalyzing alleged adult autistic males who happen to be into child pornography.

However, near the end of the article Ms. Willingham cited another autism ’cause du jour’ of 2015 which I remembered reading about, ‘circumcision’.

That one had me really scratching my head when I read that pseudo-scientific report.

As I recall, the hypothesis of that over-the-top cause of male autism was the result of the pain experienced during the circumcision process which altered the genetics of the brain. Really? 🙂

In the spirit of starting off the new year, let me add my theory and autism ’cause du jour’.

The cause of autism is the interbreeding of alien lizards from an oval planet with humans on a tiny round planet.

As ‘The Story of Leonard’ unfolds, I hope to make a valid scientific case for that hypothesis… 🙂

[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]

Aspergers_Strengths_Talents_2474

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…]

 

 

 

 

 

 

Lupus ANA test, positive or negative?

 

One of the first tests that a doctor will order when a patient is suspected of having Lupus is an antinuclear test called the ANA.

That test studies serum (blood etc.) to see if there are any active autoantibodies doing battle with antigens.

There are two methods used to conduct this test, ELISA which is pretty much of an automated process, and the old fashion method called Immunofluorescent Assay. The old fashion technique involves an experienced lab technician to look for those little culprits under a sophisticated microscope.

The ELISA test is considered more sensitive and specific, and most importantly it is really quick and cheap to do.

There are two types of ELISA tests, quantitative and qualitative. The usual test that is ordered is the ‘quantitative’ which gives either a ‘positive’ or ‘negative’ result. A ‘qualitative’ test will actually list the ratio of any positive result. They both use the metric of ‘dilution’ to analyze the results.

Hence if your ELISA ANA test is negative, most doctors will stop there and suggest that you may have some other ailment in lieu of Lupus.

Unfortunately these tests are not perfect nor are they regulated per se by the FDA.

In fact, there are numerous manufacturers of ELISA Kits all vying for business with medical laboratories.

Each of the different manufacturers have their own design protocol for creating an ELISA Kit supplying the supposedly correct antigens to be used against a patient’s serum that may or may not contain autoantibodies. Remember, the goal is looking for too many autoantibodies which may be causing havoc in your body.

The American College of Rheumatology which is the pseudo-governing body of standards for rheumatic diseases recommends using the old fashion test, specifically the Indirect Immunofluorescent Assay (IIFA). They refer to it as “the gold standard.”

This test requires an experienced lab technician to analyze the patient’s autoantibodies against targeted antigens. The semi-automated ELISA test takes around 90 minutes and the IIFA test can take anywhere up to 3 hours to complete. Furthermore, most reputable labs using the IIFA will have at least three lab technicians verify the results before committing to them.

In a research paper published by the Cleveland Clinic in July of 2015, they concluded that although the ELISA test is more sensitive and specific, the IIFA test with a positive low titer ratio of 1:40 is what should be used in evaluating a patient for Lupus.

After careful analysis of varying ELISA Kits tested against a sample population of patients with a concrete diagnosis of Lupus, they discovered that the ELISA test could actually provide a false negative.

In other words, a higher sensitivity and specificity does not always provide an accurate result.

Furthermore, if one peruses the Lupus Support network and reads the comments by a multitude of individuals, many have reported that every six months their ANA test will revert to either a positive or a negative. The implication is that sometimes an ANA test is only relevant during an active disease state.

Should the reader of this post still be in the process of being evaluated for Lupus and an ANA test has been done, first check to see if it was an ELISA test, then whether or not it was a ‘quantified’ or ‘qualified’ test.

If it was an ELISA test and it came back negative, use the report referenced in this post with the link above and show it to your rheumatologist.

Ask your doctor to request an Indirect Immunofluorescent Assay (IIFA) test be conducted to see if there is a positive result at a dilution of 1:40.

In order for either the ELISA ANA test or the IIFA ANA test to be of value, it is essential that the patient is not currently taking any kind of immunosuppressant medications such as Prednisone or Aspirin.

[To be continued…]

Intro to The Story of Leonard

Leonard, the friendly vegetarian lizard from an alien oval planet, is my alter ego.

There’s an expression in the autistic world called “pretending to be normal.”

It refers to a learned behavior by autistics to assimilate into normal society without appearing too weird. In other words, the power to blend in.

When I was little I didn’t know how to be normal nor did I know that I needed to pretend to be normal in order not to be bullied and made fun of.

Instead I was just myself and somewhat locked into my own world.

I had a severe speech disorder that is technically referred to as Developmental Verbal Dyspraxia. I tried to blurt out words and sentences as fast as my brain was thinking. When I did that, the words were jumbled and out of order causing me great frustration since no one other than my mother and grandmother could understand me.

I was very clumsy and always had bandaids on my scratched up knees from falling over my two left feet. That’s called Developmental Coordination Disorder. I always wanted to go from point A to point B as fast as possible, and with two left feet I generally ended up on the ground during that process. I also think that my lack of balance while walking was part of the impetus to move as fast as possible to get to where I wanted to go.

I was expelled from kindergarten after the first two months for a couple of reasons. When it was nap time, I couldn’t fall asleep so I’d walk over to the crafts area and start fiddling with stuff. That made the teacher really angry.

We had one bathroom for the kindergarten classroom and if I needed to go pee, I’d just go in there not realizing that a little girl might be in there using it at the same time. That made the teacher really angry.

I wouldn’t respond to my name when it was called because I had no idea why the kindergarten teacher was saying it. That made the teacher really angry.

I pretty much did what I wanted to do because it was my world and I controlled it. That made the teacher really angry, and I suspect that was the main reason that I got expelled from kindergarten.

The following year I was old enough to be enrolled into first grade at age 6. Instead of sending me back to that public school, my mother enrolled me in our local Catholic grade school, St. Michael’s in the center of Los Angeles. We were Catholic so that made sense.

After the first six weeks of first grade in October of 1958, my mother took a day off work and hauled me to our family doctor. I was sitting in the examination room while my mother and the doctor were having a rather heated discussion in the hallway; the door was wide open.

I heard her tell the doctor that the school didn’t want me to come back, and one of the main reasons was that the teachers couldn’t understand a word that I was saying. I suspect my behavior had a lot to do with it as well.

That was the first time that I heard the word ‘autistic’ while coming out of the doctor’s mouth and the doctor subsequently recommending Speech Therapy, whatever that was.

When we got home I immediately went to look up that word ‘autistic’ in the dictionary; I was able to read since around two and a half thanks to all of the Life Magazines that my mother liked to buy.

Unfortunately I wasn’t a great speller yet and I assumed the word started with an ‘o’ and a ‘t’. Consequently, I couldn’t find ‘otistik’.

Since my cousins always referred to me as a ‘brat’, I assumed the word ‘otistik’ referred to my bratty behavior.

Somehow my mother forced St. Michael’s to keep me enrolled and I subsequently spent a lot of time during first grade in the ‘cloak room’ for getting into trouble or had my thumbs smacked with a ruler by one of the nuns. That was their method of disciplining a child with bad behavior.

That same year was the start of my Speech Therapy. My mother found a speech therapist that also taught singing lessons at a local theatrical school in Los Angeles. She enrolled me in singing lessons, tap dancing lessons, and drama lessons.

The singing lessons helped me to learn how to slow down and enunciate words in a more intelligible manner, at least while I was singing a song.

I liked playing games and I liked to win so I treated the singing lessons like a game to win.

When the teacher would hand me the sheet music with the lyrics, I would read the lyrics twice and imprint those words and odd looking symbols into my mind. Back then I didn’t know the term ‘photographic memory’ but that’s how I did it. Those odd looking symbols had a pattern that I could associate with each word in the lyrics. I didn’t know what they were called and it didn’t matter. There was a structure that somehow made sense to me to interpret, and in turn I could associate each symbol to a particular musical note.

The tap dancing lessons helped me to learn how to control my legs more efficiently and limit the necessity of bandaids on my knees. There was a structure and pattern to those as well, and since each dance was intertwined with music it made it easier for me to remember how to associate each leg and foot movement to a particular song.

The drama lessons were probably the most important therapy that my mother implemented. They helped me to learn how ‘normal’ people interact with each other. Each play was an alternate world mimicking some type of social interaction or exchange of emotions. It was a game to me as well, and since I liked playing games and winning, I worked really hard learning how to pretend to be one of the characters in a particular scene.

The following year while in second grade at age 7, I realized that the other kids didn’t know how to fit into my world. So I started to observe them in more detail.

I watched how they interacted with each other, both verbally and in actions, and applied my new knowledge that I learned in drama lessons to try and mimic them.

That period in my life was the beginning of my study of human behavior.

And since I was Leonard, the friendly vegetarian lizard from an alien oval planet, I needed to learn how to assimilate amongst humans…

To be continued…