I’m not autistic; and, you’re probably not either.

The problem with the criteria.

The criteria for diagnosing autism are based on a fundamental presumption that autistics are not able to understand another person’s perspective or notice or understand unspoken social or emotional cues. The very etymology of the word “autism” encapsulates a “morbid self-absorption.”

These presumptions are applied to autism diagnosis under “Criteria A,” in the DSM. A person is required to demonstrate deficits in social-emotional reciprocity, nonverbal communication, and relationships generally. However, it’s clear from the volume of reliable content addressing people with acceptable reciprocity, nonverbals, and/or relationships who have also been diagnosed with autism, that the elements of criteria A no longer comport with public or even clinical perception. We’re talking about some extremely empathetic, reciprocal people who can notice and understand nonverbals easily. It’s as if the category of “dinner rolls” (autism) has become the vernacular for “all bread-based products” (neurosensory/developmental issues) and is being utilized as such by consumers and bakers alike.

What’s worse, the elements of criteria A do not comport with the lived experience of many “autistics,” including non-speaking people diagnosed with level 3 autism (representing the highest level of support required for survival). For example, there is now copious, documented evidence of non-speaking “autistics” displaying their intense empathy and sensitivity to nonverbal and other social and emotional cues through spelling or typing. Clearly these people do not have a “morbid self-absorption.” No, we find just the opposite, namely, that some of these people have spent decades attempting not to bother their loved ones with their disabilities, and enduring extreme patronization in the process. As an illustration, consider a child of average intelligence. If they suffer a TBI that leaves the motor pathways for speech damaged into adulthood and then we throw in some sensory issues and OCD, would they have autism?

Additionally, as anyone can plainly observe by reviewing material made by “autistic” content creators, some narcissists and psychopaths are being diagnosed with autism. As Sir Simon Baron-Cohen explains, autistics lack cognitive empathy but possess strong affective empathy, while dark personalities display the opposite. (It is my personal belief that “Highly Sensitive People” possess strength in both cognitive and affective empathy, making them “doubly empathetic.”) I submit that it’s better for everyone if we don’t give dark personalities the
“stick” of an autism diagnosis to beat up or misrepresent either non-dark autistics or non-autistic people with autism diagnoses.

We even have three “levels” of autism now. All of this complication is because we’re simply not all talking about the same conditions or syndromes. It’s time to bust things up.

Why you would think that people like me are autistic; but, we’re not.

Maybe you or someone you know is like me, stuck between the proverbial “rock” of life-impacting neurosensory issues and the proverbial “hard place” of autism being the closest diagnosis that’s nonetheless out of reach.

Are you also “autism adjacent?”

You could be forgiven for thinking that I’m autistic because of my neurological and sensory (“neurosensory”) issues, which I provide ample examples of at the end of this article. But, because I’m “aces” at nonverbal communication and social-emotional reciprocity, I do not meet criteria A for an autism diagnosis. This is not my mere opinion – but are things that I was told by a research psychologist at a center with expertise in autism and then spontaneously brought up again by another PhD psychologist when seeking counseling for an “unrelated” issue over a decade later. Plus, I’m very good at abstract reasoning. So, no autism diagnosis for me

You are “aces” at lots of things that I stink at. But, I’m pretty stellar at cognitive empathy. That asymmetrical microexpression of disgust that leaked out when you smiled? Yeah, I caught that. The slight change in the pace of your speech, while you’re telling me that you’re not in a hurry or anxious about your interview? Yeah, I caught that too. That you slouch and find other ways of appearing smaller every time a certain person shows up? Yep. Not only did I catch those things – but, with context, I also know what they mean to you — maybe better than you do.

But wait! Thankfully for society, I also possess extreme affective empathy. I’m a “total marshmallow.” Just as I’m not able to tune out the information contained in the “background” of movies that I’m watching – I can’t tune out your emotions either. Ah, mirror neurons!! And, I’m genuinely and extremely empathetic. I easily meet Elaine Aron’s criteria to describe a “highly sensitive person,” or “HSP.” (Which, overlaps with both Autism and ADHD. Go figure.) So, I often end up feeling what others feel, for good or ill, and am highly motivated to take action. But, like many autistics, I am also direct and care little for many social norms, to the point of being impolite, which is a “fun” mix – so, some folks do find that combination confusing. C’est la vie.

Maybe you or someone you know is also “autism adjacent.”

The problems with following or ignoring the criteria.

What would happen if we strictly followed the diagnostic criteria for autism? As I mentioned, many non-speaking “autistics” turn out to demonstrably fail to meet the criteria, once they are able to communicate via spelling or typing. So, why don’t they lose their autism diagnosis if/when it’s revealed that they have strong social-emotional reciprocity and ability to understand nonverbal communication, thereby easily failing to meet criteria A?

Supports – that’s why. There’s more than an outside chance that without their autism diagnosis and the support that it affords, they would not survive or would otherwise be left to languish. GOD, please help us all.

There are a lot more supports for autistic people than folks with “sensory processing disorder,” which is a diagnosis that carries zero weight where I live. Wait. It’s actually much worse than that. It’s a credibility killer, much like a diagnosis of anxiety. It’s the same reason that I was offered an autism diagnosis by one masters-level practitioner despite the confidence of two PhD psychologists in determining that I don’t meet the criteria. He could do this in good faith, despite my obvious autistic “failings,” because PDD-NOS, which served as the highly heterogeneous backstop for the un-classifiable neurodevelopmental world, was folded into autism spectrum disorder. *face palm*

No doubt, many practitioners are using their diagnostic discretion to diagnose “autism adjacent” issues as autism to help people get support, which along with the recent criteria expansion, is contributing to the explosion of autism diagnoses. Helpful people tend to help people.

So, the label of “autism” is becoming one of those “it means whatever you want it to mean” labels. This “loosey goosey” approach to helping people, sadly also empowers dark personalities to enrich themselves by skimming resources intended for other people and to misrepresent themselves and the very people they often prey upon and who should have access to those resources. *double face palm*

What needs to happen is for us to acknowledge what many of us are already profoundly aware of – that there are multiple conditions or syndromes being addressed as autism and, on a fundamental level, they aren’t all autism – and yet, people need help.

We don’t need a “bit bucket” of meaninglessness. We need a new framework — an a la carte model.

If an autism diagnosis is going to mean anything, the criteria ought to be strictly observed. So, if someone does not have the required deficits of criteria A, then they should not be diagnosed with autism. That should bring the numbers back into a range that would be approved by the stalwarts and restore some credibility. But, (unlike my surrounding culture that rails against impaired elderly people driving but then provides no alternative for them to obtain food and society for themselves) – we must also find a way to avoid throwing people who don’t technically meet criteria A into a ditch somewhere and telling them to figure it out.

I am currently aware of three options (maybe you know some others):

Further expand the criteria for autism (which is ill-advised since many, or even most, of us are already not “morbidly self-absorbed” in the ways that motivated the name and definition of the condition in the first place),
Start formulating diagnostic criteria for the other neurological/developmental/sensory (“neurosensory”) conditions that are being lumped into “autism” and move them out into their own separate diagnoses, or
Change the diagnostic framework at a foundational level.

So as not to lose ground on all of the efforts to make the general population more aware of conditions like autism, ADHD, and motor issues, I vote for option #3.

Proposed Model

What is common to, and foundational for, the syndromes and conditions being diagnosed as autism are neurosensory problems. So, we’re going to need an umbrella diagnostic category. Let’s call it something wildly descriptive, like “neurosensory conditions.”

This umbrella category will include autism, ADHD, HSP, and sensory processing disorder. [This would require us, as a society, to move forward in acknowledgement of scientific advancements that show that sensory processing disorder does not evaporate after childhood and is a biologically based condition with sweeping effects – just like autism and ADHD. Shout out to UC Davis Mind Institute and other organizations working on this. But, I digress…]

From here it’s reasonable to define each of the sub-diagnoses based on the primacy of issues/distress in the following six categories:

Sensory seeking/overwhelm/disintegration,
Motor,
Speech,
Cognition,
Attention and memory,
Social/emotional reciprocity.

The definition of “neurosensory conditions” would specifically state that these conditions tend to affect people across all six domains (for good or ill) in accordance with reality. But, the diagnoses would focus on suffering, detriments, and deficiencies — because people don’t tend to give up their money to fix strengths — duh.

Nonverbal “autism” is renamed and classified under “neurosensory motor condition – nonspeaking.”
Classical autism keeps its label, its criteria are strictly observed, and it is organized in the hierarchy as a neurosensory condition – impaired social/emotional communication.
ADHD is renamed Dopamine-seeking Syndrome to acknowledge the science that it causes selective, rather than a uniform absence of, attention and is organized in the hierarchy as a neurosensory condition – interest-based attention and memory.
HSP would keep its label and be organized as neurosensory condition – heightened social/emotional reciprocity.
Sensory processing disorder becomes “neurosensory condition – sensory seeking/overwhelm/disintegration.”
Issues that primarily affect cognition become “neurosensory condition – reduced cognition” or “neurosensory condition – increased cognition” for those who have stupidly high IQs (see what I did there?) and that’s what’s primarily driving a wedge between them and society on top of their other neurosensory problems.

Again, it would be presumed that all neurosensory conditions are biologically based and that they all affect all six subcategories, unless otherwise stated – but, in different ways. Each person would be uniformly evaluated across all six metrics so that we can all admire their (or, in my case, our) “spiky profiles,” ultimately acknowledging both strengths and weaknesses.

Great! Let’s get on with it then. Or, if you have a better a la carte model because you understand these things better than me — good — then, go do something about it. But, keep it an a la carte model for the sake of the people with these issues.

Decide for yourself: Is this person autistic?

Take this opportunity to pretend that you’re a psychiatrist or psychotherapist for a few minutes and consider the following case description. Do you think that this person (who is me) is autistic?

Motor and Sensory Issues

Lack of ability to perceive location of extremities or sounds, or to distinguish certain touch sensations, clinically verified by specialist OT.
Unable to remember to keep mouth closed until later childhood, despite constant reminders from parent for years. Difficulty learning to tie shoes. Still struggles with typing after decades of practice.
Sensation-seeking for visual, gustatory, and olfactory senses, as well as deep pressure. Any light touch results in instant, consuming rage and at times outbursts. Intolerant to many sounds, especially at high volume – but, not bothered by own sounds at high volume. Intolerant of fluorescent lights, bright sunlight, strobe lights. As a child, risked taking on abusive parent rather than wear socks with intolerable seams.
Cannot filter out background details in visual field, images, or movies. All information “comes in” and is processed.

Lack of Habituation/Special Interests

Does not tire of foods, videos, music, or topics with extensive repetition.
Failure to habituate to touch sensations, sounds.
Strong drive to continue researching interests and gain/maintain expert-level knowledge. For example, was researching Russia and Cryogenics in early elementary school. Yay! Took Russian at university – but, had too much language difficulty to pass second-semester. Ugh.

Rigidity

Meltdowns or shutdowns following perceived or real violations of self-created routines and rules. Nevertheless, has no fear that something bad will happen if they are not upheld, as in OCD.
Does not tolerate “unapproved” changes to environment, relationships, or communication.
Inability to tolerate perceived dishonesty in self or others or cruelty in others, resulting in job loss and social exclusion. Gave examples of refusing to follow supervising attorney’s direction to complete certain documents that were not factually accurate, took on angry adult to defend dog, took on two strong boys to rescue cockroach, etc.
Will not/cannot participate in social niceties, such as informal hugging or “white lies.”

Social Issues

Does not understand certain social behaviors related to “pecking order,” “plumage,” etc. Questions why people purchase new clothing every year to “stay in style;” and, isn’t sure what that even means. Complains that corporations will just tell people that they are ugly or of low standing unless they update their wardrobe again next year. Complains of being asked how they are doing when the asker does not actually want to know.
Often accused of “taking everything too literally.” Complains that others should just say what they mean and work toward noble goals, instead of participating in jockeying for social acceptance and position, especially at the expense of others.
Preferred the company of animals to people until salvation experience by JESUS CHRIST. Described friend’s shock at ability to instantly befriend attack dog and roughhouse with it unharmed, despite history of biting.
Intolerable failure to understand why subordinates support incompetent or dark personality-type bosses, with multiple job losses as a result.
Generally flat affect, despite big feelings. Has learned how to show more on the outside what’s happening on the inside through practice.
Gets along easily with “nerds” and “softies.” Enjoyed and excelled at working with children and computer nerds. Loathes interacting with nearly all people “in the business world,” especially those in leadership.

Speech, Cognition, and Memory

Nonverbal until nearly 4 years old. Spontaneous speech acquisition after nearly dying from abuse by parent, although continues to experience distress from the act of speaking. Prefers motioning to speech. Desire and efforts to learn sign language to avoid necessity of speech. Unusually advanced vocabulary for age. Still struggles mightily with spelling and grammar into adulthood. (Yay, spellcheck, grammar check. Ugh, rewriting what I rewrote for my rewrite revision.)
Spontaneously repeats phrases from movies, songs, etc. and often has to explain for the listener to understand the connection to the present conversation.
Most speech has and continues to be in the form of questions.
Unusual cognition processes described as “thinking in pictures and video” similar to description by Temple Grandin (well-known autism advocate). Cognitive method contributes to eidetic-like memory in certain circumstances.
Very superior IQ, verified by repeated testing (5 tests total). Extremely good, “out of the box” problem solver. Demonstrated capability in multiple unrelated professions and acquisition of advanced, professional degree (law). Self-taught gardener, computer programmer, interior designer, seamstress, costume designer, teacher, and life coach.

Co-morbid Conditions

Documented, medical history of neurological problems, hypermobility, mast cell disease, GI distress, hormone disruption, lupus-like illness, and severe insomnia.

I don’t meet criteria A; and, despite all of the foregoing, I don’t think that I should be diagnosed with autism. What do you think?