The Way I See It: “Wizard, why do scientists continue to search for that illusive ‘cure’ for autism, and what difference does it make if I’m different?”

Subtitle: “Dorothy, that’s hard to answer, but I think the main goal is to help you assimilate into society and reach your fullest potential.” – answered the Wizard of Oz

The article attached provides an assessment of autism therapy and current research at a very high level.

Oddly enough, it provoked a lot of thought in my ancient autistic brain, reflecting on my own pseudo-childhood therapies, and my own concoction of Behavioral Analysis Therapy which I performed on myself as an adult.

One of the key words in the article was ‘plasticity’ as it relates to the brain. The concept is that as a child, our brains are considered to constantly change from both environmental input as well as biological changes of an emerging living creature.

In reality, our brains demonstrate ‘plasticity’ for as long as we are living, attempting to cope, modify, and re-emerge with new synaptic connections in order to adjust to a constant changing world.

The flip-side to this concept is when our brains and the patterns created get stuck in an endless loop or software program, and we subconsciously or biologically stay static.

There is much debate on how, when, and what therapeutic interventions are needed to help an autistic child or adult, and the big question is why!

One of the debated therapeutic interventions is making eye-contact. Why is it important to make eye-contact?

In reality it isn’t important but social humans use that semi-innate capability as part of their communication methods, and I’ve trained myself to do it just like Dr. Temple Grandin did, but it still feels foreign and uncomfortable, and frankly just plain silly as a critical need.

However, social communication is important because that’s how we humans integrate amongst each other, learn to coexist on a very tiny round planet, and eventually use that tool for becoming contributing members of society.

And probably the most important aspect of social communication is the ability to make friends, establish personal relationships, and maybe one day fall in love with another human being, attempt to coexist together, and share lives which may include raising a family.

Therefore, whether you’re for or against therapeutic approaches, including Applied Behavioral Analysis Therapy, sometimes it makes sense and is needed.

And the connection of scientific research looking for those illusive genetic combinations that ultimately affect our neurology and behavioral manifestations are an adjunct process to identify which genes affect which behavioral manifestation so that individualized treatment can be more effective.

Will we ever ‘cure’ or eradicate autism? I certainly hope not, I’m perfectly happy just the way that I am, and based on historical anecdotes much of the great science and art created over the centuries are a result of someone being on the autistic spectrum.

However, as primarily social beings needing other human connections in order to feel a sense of belonging and as equal partners sharing a small space, we do need to figure out what tools might help achieve that, and unfortunately the dreaded notion of behavioral therapy and psychometric drugs are part of that equation, at least until 99% of the planet is populated by autistics in my humble autistic opinion of course. 🙂

I hope you glean something from the attached article, preferably a more objective viewpoint on the heated debate regarding treating autism, and why this subject should still be discussed.

Excerpt: Ultimately, the question is not, “What is the best autism intervention?” but “Which method is the best match to this child’s profile of skills and needs?”

Article: Autism therapies blur boundary between clinic, everyday life

The Way I See It: “Wizard, what does the term ‘twice exceptional’ mean?”

Subtitle: “Dear Dorothy, that’s complicated but the basic idea is that whatever challenges seem to rule our lives, there is often something very special about us which enables us to be a bright shining star.” – answered the Wizard of Oz

Article excerpt: Dr. John looked up at me and said with a chuckle and disbelief, “In all the years I have been testing people, not one person has ever solved this last puzzle. Not only did Jack solve it, he did so in 62 seconds, breaking the record of 90 seconds.”

In my previous post, I included an article about gifted children and talked about the time when I also took the mandated IQ tests.

So when I saw this article, it resonated with me, not because an autistic child was suddenly found to be gifted, but because the mother understands that it’s important to find that special something in their child, help that child develop it, and flourish it in whatever ways that they can.

“It’s time to think differently!” that’s the theme of the article and the words of wisdom by a mother sharing the story of her child.

I always start my posts with the words “The Way I See It…” and the reason that I do that is to pay homage to another autistic that is often praised and often criticized, Dr. Temple Grandin.

She’s written several books on autism, I have read them all, and I have also watched many of her talks via YouTube videos.

One main pearl of wisdom that she always reiterates is “Find that special something in your child that they are good at and help that child build on that to reach their fullest.” For the record, I’m paraphrasing her remarks.

Whether you’re a parent of an autistic child or an autistic adult that is still trying to find your path in life in order to reach your fullest potential, my advice is never give up, search for that special gift or skill, find it, and make the most of it.

I hope you find the attached article worth reading, I did…

Article: Autism: It’s Time to Think Differently – Your Child’s Future Depends on It

“Wizard, why are some autistics geniuses and others barely able to learn to tie their shoes?”

Subtitle: “Dorothy, God only knows! But all autistics are special human beings, each have their own stories, and each are capable of fulfilling whatever capacity they have to be equal partners and contributors to society.” – said the Wizard of Oz

[Trigger Warning: You might find this post too long and quite boring, however I do recommend reading the attached article. It’s interesting…]

When I read the story attached below, it reminded me of my first 4 ½ years in elementary school.

After first grade and the first two months of that episode of nearly being expelled again as in kindergarten, the teacher in second grade realized that I might be one of those special kids with a brain. 🙂

Consequently, for the next three years while attending my first elementary school, I was put in a special class of students that showed unusual aptitude. And this occurred in a very basic Catholic school where the concentration was on Reading, Writing, and Arithmetic also referred to as the three ‘R’s.

After the first trimester of fifth grade we moved and I had to change schools, another Catholic parochial school. I was an unknown entity at the new school albeit with my favorite teacher of all time, Mrs. Zinnert, one of the few non-nun’s teaching there.

As an unknown entity who came off rather “weird” due to my language disorder and behavior, the kids immediately focused on that and I quickly became the principal kid to “bully” incessantly.

Life was hell for the next three and half years and I did everything possible to avoid going to school, pretending to be sick was my favorite excuse and my mother gladly accommodated me with phone calls to the school that I wouldn’t be there today and provided me with a written note to take when I eventually had the courage to return.

There’s a significant storyline set of episodes that occurred during that three and a half years of hell, but as it relates to this article grade 7 and grade 8 are pertinent.

This was the late 60’s in Los Angeles and back then it was customary to dish out IQ tests and aptitude tests to students. I hated taking any kind of test due to the anxiety that it caused me, and consequently I would rush through any test that didn’t appear to be a fun game to play.

In the first trimester of seventh grade at the “school from hell” we were given two IQ tests along with a couple of other rather well known aptitude tests that complement those. The infamous IQ tests were the Wechsler Intelligence Scale for Children (WISC) and the original brain teaser, the Standford-Binet IQ test, the granddaddy of them all! 🙂

Fortunately these tests were sort of surprises and I didn’t have to remotely worry about studying for them; for the record I rarely studied for any test due to my distaste of them.

Around a month after taking the first one, the Weschler IQ test, we were individually called into the classroom of our home room, and privately shared our test results formerly. At the time my home room teacher was Sister Cristina Marie and she hated me, or at least I thought that she did. I did terrible in most subjects except for math and English, and I assume that she thought I was either just lazy or a problem child. The latter gives me a chuckle because she had no idea that I was autistic. 🙂

There I sat behind that big wooden desk of hers glancing up at her wearing that typical nun’s habit and her frameless glasses showcasing her piercing eyes with a tad bit of fear in my throat. Since I’m autistic, she didn’t like the fact that I would rarely look her in the eyes and she was constantly scolding me about that. 🙂

As I was glancing at her, she was peering down at my test results with the usual scowl on her face so I had no idea what to expect! I assumed that I probably [insert here] again and she was about to ridicule me for my lousy test results.

That didn’t happen but something worse did!

Apparently I scored in the top 99% of all US kids, and my test results we’re “off the charts”! I put that last bit in quotes because those were her exact words and the reason she said that was because I scored higher than their test algorithm could calculate! 🙂

For the next few minutes Sister Cristina Marie was screaming at me about those results, and now as an adult I suspect that she was just so aggravated with me that I had this potential but was such a lousy student! 🙂

Back to the worst part! Unfortunately one of my classmates was standing by the slightly open door, heard everything, and knew what those tests were about; I didn’t!

Consequently, when I was eventually permitted to leave the chaos of her ranting and return to recess in the schoolyard, my test results were common knowledge to all the kids.

That’s when one of the worst days in my life occurred.

As I entered the schoolyard, almost of all of my classmates were grouped together and immediately started yelling “David’s a freak, David’s a freak, etc., etc., etc.” It must have lasted for at least five minutes but it feels like a lifetime.

For the record, over the remaining two years when we were given those tests, my results were always around the same, “off the charts!” And maybe the worst part is that those teachers never shared that information with my mother nor explained to me the significance of those tests.

If I had understood that I might have had some potential God given brain power as a child and an adolescent, I might have made some different choices going forward.

However, I have no regrets because I am extremely grateful to God, to nature, and to fate to end up exactly where I am at the age of 64. And fortunately, I did make the most of that brain power while not realizing what that was until later in life.

This is a snapshot into the life of an autistic savant who happens to be one of the rarer ones with a way above intelligence (IQ score) verses what most people assume, an autistic savant is somebody with unusual capabilities but a way below intelligence level and needs constant care or supervision.

Guess what? There are a lot more of us than what are known or written about in the world, and there is a database kept by the ultimate guru on this subject that maintains those records.

I hope you enjoy the attached article.

Article: How to raise a genius, according to a 45-year study on extraordinary kids

The Way I See it: “Happy Birthday (autistic) Juanita!” said the Wizard of Oz

Subtitle: Autism and heredity, a snapshot of my story…

Today is August 28, 2016, and if my mother Juanita was still living, she would be 104 years old today!

Therefore, “Happy Birthday Mom wherever you are!”

However, Juanita did live to the ripe old age of 90 and did surpass many of the reported statistics about autistics tending to die young.

Juanita was never diagnosed as being autistic, but I have spent many hours analyzing my family, and concluded that she was on the Autistic Spectrum and would have probably been given the diagnosis of Asperger’s Syndrome which is still in vogue outside of the United States.

In fact, Juanita was not the only autistic sibling of five, her younger brother Tommy and her younger sister Carol were far worse or more autistic like I am.

What is interesting to me is that each and everyone in my family who is or was (deceased) on the autistic spectrum, managed to have a reasonably normal life in spite of their neurodiversity and any accompanying physical or mental disabilities that often results as a comorbid condition.

However, there were two exceptions. My mother’s brother Tommy, the youngest of the five, made it to adulthood, married young, had two children, but quickly regressed into a more severe autistic state in his twenties, resulting in living off and on in either a mental institution or a half-way house for the rest of his life.

His story was pretty sad because when this happened, his wife divorced him and never permitted his children to know him, and when his children became adults, they made no effort to contact him nor check on his well being. He died at the age of 57.

The other exception is my female cousin Nancy who is three weeks younger than me and is also an autistic savant.

In fact, growing up we always considered ourselves twins and often wondered if either her mother or my mother gave one of us up to the other. 🙂 [I’ll save our savant stories for another post if anyone is remotely interested]

Her mother Carol was an easy one to figure out as being on the autistic spectrum, because I’m just like her, a little on the crazy side 🙂 with the dreaded habit of thinking out loud, i.e. having conversations with one’s self :), and potentially appearing as a flaming schizophrenic who thinks there is actually someone there listening to their opinions or rants. 🙂

[for the record, I am not schizophrenic and neither was Aunt Carol, we’re just quite vocal with our thoughts 🙂 ]

However, this segues back to Nancy, the second exception in my family of autistics that had less of a normal life than most of us.

There is a comorbid condition with autism called Scoliosis and many are unaware of that. In essence, that is a curvature of the spine, shared by Nancy, her brother Michael (also on the autistic spectrum), and myself.

Fortunately, scoliosis is a minor problem for Michael and me, but Nancy’s was far worse requiring several spine surgeries and body casts all the way into adulthood, but that’s not the worst comorbid condition that Nancy developed. Like many on the spectrum, she developed a subtype of schizophrenia which often interferes with her life.

To be fair and accurate, Nancy did become a Special Education Teacher and from what I know, was very good at it. She was unable to have children of her own due to the several back surgeries and frequent spine X-rays, but this career gave her the opportunity to be a pseudo-mom while the real mothers were at work trying to support their families.

Above I stated there were two exceptions in my family that had less than a normal life as an autistic, and maybe one could assert that there were actually three, my mother Juanita.

Like a lot of autistics, my mother had difficulty with relationships, both in marriage and just having friends in general. Her first marriage was the longest, around eight years, but her subsequent relationships lasted less than two years, including that with my father Mel, who was also on the autistic spectrum; look up “assortative mating” if you’re interested.

Prior to my birth, I only know things about my mother Juanita that were either shared by her, by my grandmother, or by my aunts. But what I do remember as observations was that my mother had maybe two friendships of short durations during my entire life. To me, that is very sad and another example of how many of us autistics are clueless in making and keeping friends.

On the flip-side, my mother dedicated the first eighteen (18) years of my life to me, taking care of an autistic child, and trying all sorts of things to help me improve and survive.

And it worked because I did survive a tumultuous childhood of illnesses and bullying, and learned how to be a strong individual based on her example.

Therefore, we autistics may have a variety of deficiencies based on a non-autistic’s point of view, but we make up for it by being resilient, innovative, creative, and honing in on a basic trait shared by most mammals, the innate instinct of survival no matter what!

My mother Juanita gave me all of those and taught me to be a strong individual with character and honesty, and those gifts are priceless.

“Happy Birthday Mom, I miss you…”

Juanita

The Way I See It: “Wizard, am I just an ordinary autistic?”

Subtitle: “Dorothy, there are no ordinary autistics, each and every one are very special in their own way.” – replied the Wizard of Oz

If you’re autistic like me, most of us look for others like ourselves to connect to and relate to, hoping to find that mystical “normalcy” of life as humans.

Each day we’re bombarded with new scientific discoveries, most of the time related to some specific new gene combo that tries to explain why we exist, just like religion does.

My theme for this post really has nothing to do with the latest revelations in science nor the latest news byte by a celebrity mom of an autistic young adult like Toni Braxton who made quite an impact a few weeks ago about her son miraculously being cured of autism and becoming a “social butterfly.”

I actually intended to write a post about her 15 minutes of sensational news because one of the articles by a reputable news source mentioned that she had Lupus, an autoimmune disease that is known to spawn autistic children.

Toni Braxton’s contention was that her teenage son is now cured of autism. He might have overcome some of the more severe aspects of autism, but an autistic is always an autistic and we simply learn how to adjust in order to either fit in or “overcome” some of the more severe aspects such as a language disorder like Developmental Verbal Dyspraxia which I did at the age of 13.

When I read that she had Lupus, an autoimmune disease, I was ready to pounce on that one to continue my posts about the relationship of autoimmune diseases as the “smoking gun” of causes to add to the flurry of ’causes du jour’ of autism.

But tonight that’s not important. What is important to me as an autistic is the magic of ‘music’ as an antidote to a crazy world where I usually feel like ‘an alien from an oval planet’.

As a somewhat ancient autistic, I’ve spent the last sixty plus years trying to navigate a foreign world.

And the one constant in my life that has helped me traverse this foreign maze is the magic of music, both the melodies and often the lyrics as well.

Many of us use other tools to cope with life such as connecting with others on Facebook to either share our stories or ask questions from others on how they handle being an alien, and I’m often one of them. And at other times we look for the stories of other autistics in order to identify and formulate a justification for our existence.

In essence, we’re looking for a reason to love ourselves as we are, a human being with what is referred to as neurodiverse brain that appears different to “normal” earthlings.

I have finally past that stage and I’ve accepted myself as anything but “ordinary”. I have learned to love myself as I am, and to be grateful to nature, genetics, my parents, and to God, if he or she exists, that I was created this way, and I do as much as possible to take advantage of my autistic gifts which are bountiful.

If you happen to read this post and you are autistic like me, I pray that you will reach that stage in life where you no longer question why you exist nor wish that your were “normal”, and relish in the thought that you were born different, anything but ordinary, and make the most of your autistic talents which often become more apparent as you grow older.

I have a gut feeling that there is more to autism than just a different brain wiring!

Subtitle: “Dorothy, go with your gut instincts!” – said the Wizard of Oz

The other day one of my very close Facebook friends who I love and respect dearly asked for my thoughts on an article that she posted on her Facebook Page from PsychCentral about co-occurring disorders with ADHD. My friend had a provocative thought related to the topic which I find very intriguing, that co-occurring disorders might be a form of societal Post Traumatic Stress Disorder (PTSD) from systemic bullying and abuse.

My first mental reaction was to mention that I pay very little attention to psychiatric labels primarily due to the ambiguity of descriptions, and the overlapping of symptoms with a variety of those labels.

The label ADHD is one of the most controversial labels introduced into the psychiatric lexicon, and most psychologists and psychiatrists cannot agree on a definitive and concrete set of characteristics, and it may be masking a biological or neurological difference such as autism.

In fact, often an autistic child that is verbal is first diagnosed with ADHD, and if he/she is lucky, a knowledgeable professional will eventually realize that the child is on the Autism Spectrum and change course regarding therapy.

One of the main co-occurring disorders mentioned in the PsychCentral articles was Anxiety Disorder. There are various sub-classifications pertaining to that label, and the principal generic one is Generalized Anxiety Disorder. That particular label was added to my Autistic Label when I was eleven years old, note after the autism diagnosis.

The main problem that I have with psychological or psychiatric labels is that most of the time the professionals that dish those out are focussing on the behavior of the individual and ignoring any environmental or biological components that might be involved in manifesting that behavior.

Consequently, I prefer to dissect the problem down to the cellular level which I did in my comments on my friend’s Facebook post but I attempted to do that at a high level assuming the reader may not be either interested nor knowledgeable in the nitty gritty. 🙂

The gamut of psychological labels pertaining to disorders and my thoughts:

There are three primary core stimuli that result in these perceived labels or disorders, 1) cellular makeup that affects both the brain and the gut, 2) brain synapses that are either not connected, misconnected or over-connected, and 3) conditioned mental responses that are programmed in the brain based on the experiences of a person over the course of their lifetime.

One could posit that PTSD is a result of the latter of the three stimuli, a learned response that is triggered based on a previous shock to the mental system.

Most neuroscientists refer to the brain as being plasticized meaning that it changes constantly as a result of a variety of causes. However, as with PTSD, a traumatic event can cause a permanent mini-software program that is difficult or impossible to reprogram.

When we talk about ADHD, what is really going on is an abnormal amount of electrical impulses being fired by neuronal cells, and often short-circuiting synapses. Think of sticking your finger into an electrical socket and that’s sort of what is going on in the brain.

Regarding mood disorders, the majority of those are a result of a predisposition caused by the core DNA genetic profile of a person. In fact, they have identified certain genes that result in some of those conditions, and the ones identified to date that are shared by those with autism are Bipolar Disorder and Schizophrenia.

The actual cellular makeup is at the root of most psychiatric and neurological disorders, and there are two primary occurrences that affect that.

The first being the de novo mutations of cells just prior to birth, and the physical state of the mother during the gestation period.

The autoimmune system of a woman during pregnancy can go haywire, and as a result an abnormal amount of inflammation can affect a fetus.

That inflammation in turn affects the cells of the fetus, often causing abnormal responses resulting in a myriad of potential illnesses including autism.

It’s a big complicated systemic mess, and science to date has only scratched the surface in trying to figure it out. If they ever do, then epigenesis will be a viable and scary option.

When we consider “systemic bullying and abuse” upon autistics, the results of that often leads to the label of PTSD which characterizes my description of the brain being reprogrammed to adjust to that stimuli. I was a victim of that in childhood and adolescence, and I still suffer occasional PTSD episodes as a result even in my old age. As I postulated, that type of programming is very difficult if not impossible to reprogram.

To elaborate a little more, many in the psychiatric community consider ADHD a bogus diagnosis and label. I’m on the fence regarding that one because technically I fit the profile.

The real issue from both parts of the article is attempting to tie in ADHD with other psychiatric labels.

Statistically the author is correct, the majority of the time anyone diagnosed with ADHD will probably have one or more comorbid psychological disorders, and General Anxiety Disorder is somewhat universal with anyone given the ADHD label including Autism.

My impression is that the author was trying to tie those disorders together in some fashion, when in reality they may be totally discrete with varying causes.

Often the psychology professional focuses on the mental state of a patient and rarely investigates a biological or an environmental component as a root cause for a condition or disorder.

As an example in respect to autism there are many reported cases of positive changes in an autistic child once their diet has been modified via trial and error to identify certain food groups that may be affecting their digestive system.

With this example, what has really occurred is a change in the gut flora and the gut neuronal cells of that child.

The human body is probably the most sophisticated system on the planet and the most complicated simultaneously. With that said, all stimuli needs to be taken into account when attempting to either diagnose, diffuse, or alter a person’s makeup, both physically and mentally.

To wrap up this verbose post, my friend triggered a lot of thoughts on a convoluted and intertwined set of possibly related disorders, hypothesizing that ADHD may in fact be a form of PTSD induced by bullying and psychological abuse caused by society in general. I find that theory quite plausible and interesting to think about.

In fact, it just may be that humans have an innate need to bully and abuse others as a defense mechanism for their own perceived inadequacies. Some humans overtly and deliberately do it, and others may subconsciously do it without realizing it.

And maybe they all do it because they have a tummy ache, and the tummy brain is sending nasty “do this” messages to its cousin, that three pound glob between one’s ears.

If you’re still with me on this one, the next time someone tries to explain to me that 1) autism is just a different brain wiring or 2) a PsychCentral author attempts to postulate mental disorders without exploring the biological or neurological causes, you may get a really long mouthful from an old autistic. 🙂

To be continued…

Article: Think Twice: How the Gut’s “Second Brain” Influences Mood and Well-Being

Article: New neurons reveal clues about an individual’s autism

Article: Co-occurring Disorders and ADHD Part One

Article: Co-occurring Disorders with ADHD Part Two

 

OMG! Paracetamol aka acetaminophen aka Tylenol in the US causes Autism!

Subtitle: Let’s all yawn together for another silly autism cause du jour…

In case you missed it over the past few days, there were about a zillion website articles citing a recent study done in Spain that Paracetamol taken by pregnant mothers can increase the likelihood of autism, mainly in boys. I found one article that basically disagrees and debunks that premise, and personally I disagree with it too; that article is attached.

Paracetamol has been around since 1877, and it is a combination of chemicals derived primarily from aniline which is a toxic compound. The word ‘toxic’ is a red flag and actually there are some people with certain conditions that should avoid taking it. However, other than those individuals, it is a reasonably safe over-the-counter medication.

What it does not do is reduce inflammation, i.e. act as anti-inflammatory medication such as Ibuprofen, a Non-steroidal Anti-inflammatory medication which is also an over-the-counter available medication.

Since humans are averse to pain, we’re always looking for a “quick fix” such as a cheap tablet that is easily accessible, preferably without seeing a doctor and available at our local pharmacy, drug store, or supermarket.

Both Paracetamol and Ibuprofen are reasonably inexpensive and easy to acquire. However, I would recommend to a pregnant woman in pain to consider using Ibuprofen opposed to Paracetamol.

And the reason for that if you’ve read any of my earlier posts is that there is strong scientific evidence related to inflammation and the autoimmune system that may very well be the “smoking gun” as part of the real cause for autism.

If one accepts that premise as potentially valid, then controlling inflammation and quieting the autoimmune system might be a good strategy if one is concerned about having an autistic baby.

Personally, I’m glad my mother had an autistic baby, me, and I’m even more grateful that I do not have that infamous comorbid Intellectual Disabilty that often accompanies autism; however, I do have a serious Autoimmune Disorder related to autism.

If scientists want a real challenge to undertake, let’s stop trying to figure out the latest cause du jour of autism, and focus on the comorbid conditions that are often far worse, i.e. Intellectual Disablility and Autoimmune Disorders.

To me that makes sense but unfortunately I think logically and it appears that most scientists don’t. 🙂

To be continued…

Article: Link Between Autism and Paracetamol Dismissed by Scientists