It's not a "thing."

My assertion:  Autism is not actually a "thing."  

As you may or may not know, I have various family members of various generations, clinically diagnosed with various autism spectrum disorders.  In the last couple of years I have spent quite some time reading about heritable neurodivergence, reading a bit of the shockingly little scientific research out there, combing through people's lived experiences of all sorts, and hearing very strong opinions spouted by opposing factions on the internet.  

(I, myself, in the name of research and out of intense curiosity, have also taken every internet autism test out there, and my results are vary between the borderline and Aspergers level, vaguely inconclusive, as I am taking them without a professional guide.  I honestly think that ambiguity is accurate. I have always felt I was a bit "different," but I have always found my way through.  One of the main reasons people go to get a clinical diagnosis is because they or their families are really struggling, and they need help at some level, and that hasn't been a defining thing in my personal life.)  

Little by little, over time, I have been formulating my own unifying theory of neurodivergence/autism, which, sadly, I have no actual research-based way to follow up with.  I doubt I am the first person to hold this theory, but I have not seen it articulated anywhere else.

So many opposing and diverse ideas about autism are floating around out there amongst autistics and those close to them:

You're either autistic or you're not, just like you are pregnant or you're not.  You can't be a little bit pregnant, and you can't be a little bit autistic.

Everyone is a little bit autistic.

All these traits exist outside of autism, but you have to have all of them to be autistic.

Autistic traits are human traits.

If you've met one autistic person, you've met one autistic person.  No two people have the same profile. 

Beyond clinical autism, there is an autistic phenotype.

My child's Aspergers diagnosis got changed to social pragmatic communication disorder after a lot of therapy.

Autism is a lifelong neurobiological difference and can't be cured. 

Most of the autism traits listed in the DSM are trauma symptoms and are based on seeing autistic people in distress. 

My child with an Aspergers diagnosis never told school and never needed any supports there.  However, my child with social pragmatic communication disorder, which is considered 'not quite autistic', has needed lots of therapy and supports.

Functioning levels are useless, because they don't actually tell what sort of support an autistic person needs.

The difference between level 1 and level 3 autism is obvious.  Level 1s get married, raise families, hold jobs.  Level 3s need around-the-clock support for life and may be nonverbal and incontinent as adults, unable to feed themselves or sleep without support.

Level 1 hides the fact that although we seem like functional people who are just a bit quirky, some us have very high hidden support needs and are not able to stay employed or live independently long-term.

Severe autism is not different from high-functioning autism.  It's just the comorbidities that define it.

Intellectual disability is the most common comorbidity with autism.

Here is a checklist comparing Aspergers with giftedness...  There are many clinical overlaps.

I was diagnosed autistic as an adult.  I was in one of those gifted programs as a kid, and it was full of undiagnosed autistic kids. 

Giftedness is a specific neurodivergence.

 In past generations, the autism was there, but it showed up as quirkiness or learning disabilities or substance abuse...

'Highly-sensitive person' is just a way of saying autistic without saying autistic.

'Highly-sensitive person' is a neurodivergence separate from autism.

I got my autism diagnosis when I was in crisis, and it explained so many things.  I am still the same person, but I have changed the supports in my life, and I don't think I could get that diagnosis if I went back in today.

Now that I know about autism, I understand why I always felt out of place with my peers.

Gifted children can feel really out of place with their peers.

ADHD can cause emotional regulation issues and make friendships difficult for these kids. 

People think that autism means no empathy, but for some people it means hyper-empathy.

Autistic people have spiky profiles. 

So many females missed getting an autism diagnosis due to autistic masking.  Females are socialized differently from birth.

Autistic masking is an over-used idea.  Truly autistic people aren't capable of masking. 

Our idea of autism is based on young, white, middle-class boys.  It can look so different in other genders and people of color.

So many women who finally felt understood when they received an autism diagnosis, were mis/diagnosed along with the way with BPD and/or depression and/or anxiety.

Scientists are starting to think that autism and ADHD are on the same spectrum.  Some large percentage of autistic people also have ADHD, and they often show up in the same families.

Autism and ADHD in the same person combine to make a new and different neurotype, so it's best referred to as AuDHD.

Sometimes it is hard to tell the difference between autism and ADHD, because so many traits are overlapping. 

ADHD is over-diagnosed; it can easily be mistaken with trauma or people not keeping up with the hectic pace of modern life or too much screen time. 

Clinicians are just starting to realize that SPD can exist outside of autism, but there is no DSM code for SPD alone yet. 

Autistic and neurodivergent people always find each other and cluster together, because they recognize each other, diagnosed or not. 

No one knows exactly what genes cause autism.

Women with endometriosis were diagnosed with 'hysteria' in the 18th century.  Autism is the catch-all phrase now...

To meet the diagnostic criteria for ASD according to the DSM-5, a child must have persistent deficits in each of three areas of social communication and interaction... plus at least two of four types of restricted, repetitive behaviors...

The DSM is just a code book for billing insurance. 

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This is a story of bell curves, genes, epigenetics, and, in the background, health insurance.

Our brains are built from so much DNA coding, still mysterious to us at every level.  If we imagine genes, or groups of genes, for some specific traits, a survey of human brains might show a bell curve for each of these.  We may inherit a specific trait from a parent, or one trait may be some combination of what our parents and other ancestors had to offer us genetically.  Or we may have a random genetic mutation or deletion or transposition all our own. In addition, we may operate as if we are on as if we are on a different part of that bell curve than we were born with, due to circumstances (positive or negative) or training (positive or negative).  Or due to prenatal or early childhood experiences or the expression of other genes or health factors, the expression of that potential genetic trait may be altered when it "comes online" during development.

Some examples of the sort of things I am imagining...

Rigid Opinions

Using myself as an example, I was probably born fairly far left on "rigid opinions" - having fairly strong opinions about a lot of things.  Not all the way left for sure - maybe just at the left edge of "most people."  But in a lot of areas of my life I have spent a lot of time acting as if I am pretty far to the right, i.e. very flexible and have few opinions, because I learned that is a way to avoid interpersonal conflict, to which I have observed myself to be abnormally sensitive.

Or how about...

Interoception (the ability to feel what is physically happening inside our bodies)

Interoception is the ability to notice feelings in our bodies, such as hunger or tiredness or needing to use the bathroom.  Some people have naturally very poor interoception, which if they are far enough left on the curve, may mean they will need to wear diapers their whole lives, because they are unable to notice when they need to go to the bathroom.  Or it may mean they are not able to feel full and need to develop an intellectual plan for how much to eat.  Those two interoception difficulties could be two separate genes.  Someone on the far left could also be the woman who shows up at the hospital feeling pain and finds out she is in labor, never having known she was pregnant.  Someone on the far right could be someone who identifies tell-tale morning sickness the morning after.  It could be the individuals who can actually feel the electricity in their synapses when they are engaged in thought.  There are apparently ways for some of us to improve our interoception if it is poor, so someone could be born all the way at the left of the bell curve but find a way to function on the left end of "most people."  

Alexithymia (subclinical difficulty defining or describing personal emotions)

Most people wouldn't be described as alexithymic, so maybe we'll put that label on the far left of this graph.  But many people diagnosed autistic are born with alexithymia.  If you have that difficulty, you will likely be challenged in learning to understand the emotions of others since you cannot map that on your own emotional understanding, creating relationship problems.  Some alexithymic people who have decent interoception may find a work around, as they learn to identify certain inner physical feelings as intellectual hallmarks of certain emotions; thus, by going through other channels, they may operate within the "most people" paradigm.  Others may be born in the "most people" part of the curve, but due to certain cultural values, they never tie their language development into their feelings and wind up appearing alexithymic.  Or perhaps someone is "typical" in this area, but due to abuse, learned that ignoring their own feelings was safer, so they operate as someone who is alexithymic.

Stimming

"Stimming" is a symptom talked about a lot with autism, although not all autistics do it, and it is not required for a diagnosis.  It can also happen with ADHD or anxiety and also in "neurotypical" people, and really, I am not sure it should be seen as a specific trait, but really the body's reaction to inner realities.  Stimming is defined as a repetitive motion which may start unconciously and can include jiggling a leg, chewing on a lip, flapping arms, rocking, pick at skin, compulsive whistling, blinking, clearing the throat, cracking knuckles, clicking a pen cap, pacing, staring at running water, etc. etc. etc.  Some people stim to help regulate an intense negative emotion.  Some people stim because they have a lot of physical energy and are stuck in one place.  Some people stim to express a positive emotion.  Let's just imagine that on the far left are people who naturally are drawn to repetitive movements and on the far right are people whose bodies are naturally more quiet.  Some people who have learned "odd" stims on their own may have been taught to do something more discreet, or they may have realized they looked out of place in society and have trained themselves to do something more socially acceptable.  Thusly, some on the far left who might be inclined to do really "autistic" looking things may appear pretty normal.  And someone on the right, whose body is more quiet, may be responding to intense pain due to chronic illness, for example, and end up doing things that look really "autistic," like rocking.

Monotropism/Obsession/Compulsion

I am not sure whether to group these traits or not...  Someone on the left side of the bell curve has a huge capacity to think about the same thing for a long time and obsessively research it.  It may show up in one person as watching the same cartoon literally thousands of times for days on end and having no interest in watching or doing anything else.  It may show up another person as a researcher in academia becoming a world-renowned expert in their field.  It could also show up as someone who is a band groupie and collects all the stuff and has all the lyrics memorized.  People identified as autistic or gifted, or sometimes also as ADHD, may be on the left-er end of the bell curve.  People whose interests seem to be fleeting or shallow might be on the right side of the bell curve.  

...Intelligence, is also more complex, and more of a social construct than a specific trait.  As a teacher, I have worked with so many students over the years, and it is amazing how some students who are excellent in school, for example, really struggle with some aspect of violin playing, and it's not always the same ones.  Someone can be highly intelligent in maths and audiation, but quite poor in coordination.  Another can be highly developed in reading and literature and fantasy, but quite poor in translating written music to audiation.  Another can be excellent at following directions and understanding what the teacher is looking for but not be able to imagine musical colors.  Another can be quick to learn new notes and get the general outline of the music and the practice techniques but be unaware of the tone they are creating in real time.  

It is well known in the field that popular intelligence tests used by psychologists, such as the Wechsler, are culturally biased, don't account for variety in processing speeds, and ignore many valuable types of intelligence in their assessments.

Sensory processing

On the far left of the sensory processing bell curve are people who are incredibly sensitive - people who are in extreme physical, mental, and emotional distress over a smell or texture or sound, because it overwhelms their processing system.  On the right end of the curve are people whose systems are not receiving enough input so their bodies are in motion, whether subtly or quite obviously.  On the right side there may be those looking for more sensory input, because their senses are so dulled they cannot smell anything at all when there is a strong odor or who do not feel pain when they are injured.  This is probably more complex, again, than I make it out to be here, because one person can be on different ends of the bell curve regarding different senses or even with the same sense at different times, so I would imagine this to be a whole set of complex interacting bell curves.

Or how about...

Apraxia

Someone identified as apraxic on the far left may not be able to control their bodies at all, and could be unable to speak or walk or feed themselves.  Someon of the far right might be like the 6-year-old whose coordination was so supreme she could play the Bartok Violin Concerto, something the current concertmaster of the New York Philharmonic described as "not sight-readable" while in graduated school.

*********************

My point in illustrating just a very few human traits here is to say that each person is born with a myriad of sliding scale traits - perhaps hundreds or thousands.  Some people have a majority of their traits in the middle of the bell curve.  Some people may have the majority of their traits at the margins.  Some people may have different mixtures of places all over the bell curve.  When people have a couple of specific traits on the margin, we identify that with a specific label.  When they have a whole cluster of traits at one margin or the other, we often identify that as "autism," although what that specific set of traits is, differs from person to person.  Some people have a number of very-margin traits but have some opposite very-margin traits or middle-traits which make it possible for them to function fairly typically in society.  Some people have just a few margin traits, but they are so far to the side and in particularly crucial areas, that it makes "normal" life nearly impossible for them.  Some people have fairly typical traits, but due to exceedingly difficult circumstances both past and present, are operating as if they are in the margins, and are not able to do "normal" things.  

Also, there is the matter of heritable vs acquired....  

There are neurodivergencies that one is born with, and there are those which are acquired through trauma.  (By trauma, I mean difficult circumstances which have not been fully resolved by the one who experienced them.  For one person it could mean being the only survivor in their family of a gruesome war.  For another it could mean a very sensitive person who never felt appreciated by a parent whose love they really needed to feel.  Not all trauma is the same, and it may affect the recipient in ways that seem disproportionately large or disproportionately small due to other factors.) ...And there are some neurodivergencies which are apparently a mix of heritable and acquired.  I have read that one may have a genetic predisposition to OCD or bipolar disorder, for example, but it requires certain circumstances for it to develop from that predisposition.  

It is believed most of what we refer to as autism is made up of traits one is born with.  Most of what we refer to as borderline personality disorder is made up of traits acquired through circumstances.  These two different ways of moving through the world, however, are apparently often hard for clinicians to sort out in adults, and, of course, a person could have both inborn and and later-developed traits which cause disability.

There is a clinical boundary to autism, the disability, as defined in the DSM.  However, it is open to the perceptions and interpretations of the diagnosing clinician, and I have heard many stories of individual people receiving very different diagnoses from different clinicians.  There may be people outside that boundary whose minds work very much like people inside that boundary, but their behaviors look more middle-of-the-curve.  There may be people inside the boundary of autism who are struggling with something else, perhaps chronic health issues or intellectual disability, without which, they may not have fit inside the diagnostic autism box.  I understand the need for the diagnostic box - it really is a book of codes for billing insurance and the "ticket" to getting supports or therapies when they are available (which is often less than needed.)  

However, from an intellectual and humanistic standpoint, I sort of wish we could throw out the box and the terminology completely.  They are rather imprecise, because each person is totally unique and has different support needs, even including "neurotypical" people.  I am putting "neurotypical" in quotes, because I honestly doubt that there is anyone who isn't on the edge of the bell curve, by heritage or circumstance, in some area. I wish we could just look at each person with compassion and understanding and see what sort of help that person needs without inventing artificial labels and applying generalized solutions.  We are a social species and every one of us needs support and community without judgement, and I suspect that is very much true, even of people I know who seem to have it all together.  Plus I wish we were better at banding together to provide the huge amount of understanding and support that some people need which is beyond the capabilities of their families to provide.  We need more love and justice, and less judgmentalism.

People Math

Today is mathematically significant in that Laurel is the age today that Anne was on the day Lazarus was born.

I have been doing People Math like this all my life.  My brother was born twelve days before my second birthday, and my mom said I immediately started telling her things like, when he is one, I will be three.  When he is two, I will be four.  (I was obviously just at the cusp of two and could do absolutely no other math at all. I felt a bit behind/stressed in math when I was in first grade.  People Math was different.  But when I got to algebra a few years later, I loved it, and I still use it to solve daily issues several times a year.)

I have tried to pick apart People Math for myself, and I don't quite understand all the details yet.

I have a fairly decent mental database of birth years/months/dates of people who I have been significantly connected to at some point.  But there are also gaping holes.  The entries in the database seem to be predicated on my inner connection to the person (regardless of our actual relationship), and whether their birthday mathematically connects to another birthday in my database.

For example, a close preschool friend of mine (whom I haven't heard from in nearly three decades) was born precisely one month after me.  And then one of my college roommates (whom I am still in regular touch with) was born one day after that but two years earlier.  I know their birthdays precisely to this day.

Another example: my stand partner one year in youth orchestra happened to have the same birthday as another member of the orchestra, except one year apart, and the stand partner mentioned they had had joint parties when they were young.  I haven't heard from that stand partner in twenty years, but I have run into the other musicians professionally on the internet until this day, and I know their precise birthdays.

However, there are some birthdates I have wanted to track which seem to have vaporized.  Two cases I am thinking of... one I know the season and the year, but the month and day elude me for unknown reasons.  For the other, I know the month, but lost the week and have a range of five years, which occasionally irks me, although there are no external consequences to this loss.

Also, this does not mean I am able to send cards in advance of said birthdays.  That is a separate item where I have lagging skills.

Sometimes when I am walking alone or lying in bed and am feeling fairly neutral, my brain will compulsively dip into an exercise where I list names and birthdates of sibling groups and advance their ages through various months of the year.  It's sort of in the same category as listing Indo-European language families in the distant past and listing active volcanoes in Washington in the present, although it probably sounds more stalker-ish.