OUR NEW BOOK IS OUT!!!

 

PLEASE READ AND REVIEW!

Review links: 

Barnes and Noble

Amazon

Goodreads

THANKS AND LOVE,

FSM

STOP WHINING AND LEARN TO HANDLE DIFFICULTY!

Dear Persons,

Over the last few years, as I’ve had more books come out and gained a variety of speaking engagements, including two recent keynotes (watch here and here), a podcast (listen here), and other related work experience, I’ve started to expand my efforts into consulting. 

As part of that effort, I connected with a powerhouse corporate consultant and whipped up two proposed workshops to help corporations integrate neurodiversity and neuroscience into their environments and cultures.

The descriptions (* see full text below) were packed with hyper-positive reasons to embrace neurodivergent (ND) employees and extolled the benefits and advantages of a neurodiverse workforce. 

But I’m not sure anyone read through the proposals, since my distinguished professional collaborator was met with mutterings of DEI backlash rather than wild enthusiasm. 

Apparently, one charming fellow even suggested we “stop whining and learn to handle difficulty.” 

This gave me some ideas!

Never mind pesky topics like neuroscience, disability, neurodiversity, and intersectionality. 

I’m going to pivot! Circle back to the populations that TRULY need a strong advocate. 

Take people who sense that their advantages are slowly draining away from them. How about one-on-one coaching around “Staying Positive While Attempting to Forge a Path Back Toward More Privilege”? 

Or a workshop for individuals facing an onslaught of diversity in their community. This one could be called “What to Do When Homogeneity Is Challenged.” 

Consider a seminar tailored to address the downtrodden, angry leaders of corporations (or governments) that prefer to boldly eschew the legal, corporate, financial, ethical, and other advantages of actually including disabled people in their workforce (citizenry).

These inspiring workshops will help the many, many people who need to stop whining and learn to handle difficulty, or SWALTHD. 

No unimpeded access to exactly what you want all the time? 

No problem. 

The SWALTD Method© will teach you how to “Get what you get, and don’t get upset!”

The SWALTHD Method© can be deployed to help a variety of people such as: 

• Angry citizens who don’t think fancy drag queens should read books aloud in libraries.

• Individuals confused by linguistic progress. 

• Rich people grappling with a tiny bit of their money being unfairly taken in taxes for anti-poverty programs and education.

• Those who struggle with the way their cat ignores them.

• White men dealing with people of other genders and ethnicities sneakily stealing the opportunities that belong only to them. Because they are white. And male. 

• Anyone peeved by those pesky climate change-y people who want to not destroy the world. 

Please join me in considering the plethora of ways the SWALTHD Method© might be deployed to create positive evolution. 

Thanks and love,

Full Spectrum Mama

* Here is the full text of the proposed workshops:

Neurodivergence Training for HR/Welcoming Neurodivergent Employees/The Neurodiverse Workforce of the Future

Today’s constantly evolving, complex organizations need new ways of thinking if they are to thrive into the future. Neurodivergent people, who experience a range of brain differences including autism, ADHD, and bipolar, are our most iconoclastic and original thinkers. Yet most work environments and cultures are not set up to include, affirm, and welcome this vital population. An informed HR function can cultivate a range of neuro-affirming mindsets and practices, from sensory-positive materials and spaces to genuinely inclusive attitudes and clear, explicit expectations. Supporting leaders in welcoming the Neurodiverse workforce of the future will be key to this approach. Participants will collaboratively develop tools to improve workplace environments and cultures for the benefit of stakeholders [NOTE: I have subsequently stopped using this word] of all neurologies. This workshop is facilitated by Autistic author Jennifer Elizabeth Brunton, Ph.D., co-author of The #ActuallyAutistic Guide to Advocacy and The #ActuallyAutistic Guide to Building Independence.

Neuroscience and Leadership/Five-Brain Leadership/Full-Capacity Leadership/Leading With Your Whole Self

Neuromanagement strategies arise from the productive intersection of neuroscience and daily life in the business world. We will explore leadership based on a deeper understanding of all five of our interlocking brains—reptilian, emotional, rational, heart, and gut [incorporating a holistic understanding of Neurodiversity]. Through practical tools and exercises, you’ll learn how to build your capacity in each of these control centers, and to recognize all the ways they are at play in how humans operate, interrelate, and react to change. We’ll look at ways to improve not only executive function, focus, and project/time management, but also interconnection, communication, empathy, insight, and inclusivity. This interactive program will help managers deploy innovative, tailored approaches, and enable them to continue to reflectively hone their brain capacities at work and beyond. This workshop is facilitated by Jennifer Elizabeth Brunton, Ph.D., co-author of Five Brain Leadership: How Neuroscience Can Help You Master Your Instincts and Build Better Teams, The #ActuallyAutistic Guide to Advocacy, and The #ActuallyAutistic Guide to Building Independence.

 

A VINDICATION OF THE RIGHTS OF AUTISTICS

 

“I don't like using the terms ‘invisible’ or ‘hidden’ disability. You absolutely see my autism—you just don't code it correctly and instead you see everything about me as a character flaw.”

          - Kelly Bron Johnson

Dear Persons,

For years I’ve been thinking about using Mary Wollstonecraft’s brilliant feminist arguments about equality to make a parallel case for not only Autistic rights but also to contend, in line with her philosophical process, that the ways of thinking and “character flaws” that Autistic people are typically criticized for may actually be both correct and valuable. 

In Part I below, I echo Wollstonecraft’s archaic, academic language to make my case. In Part II, I state my case very briefly and simply, in plain language. Part III quotes the most relevant part of Wollstonecraft’s work for our purposes here. 

VINDICATION OF THE RIGHTS OF AUTISTICS

(with apologies/gratitude to Mary Wollstonecraft, c. 1792)

I. The 1792-Style Version

In our present state of geopolitical chaos and unrest, it seems useful to look at what human qualities and behaviors might actually further the progress and peace we so desperately seek. To do so, we may well need to question the social-ethical status quo that has brought us here. 

As we will see, I’ll build my argument logically, disregarding justification based on the claim that ‘that is just how humans are.’ Like Wollstonecraft, I’ll ask straightforward questions to get to fundamental truths. 

As always, I cannot speak for all Autistics by any means, but I can quarrel with stereotypes and misperceptions, and reason from my own experience and observations to “dispute with some prevailing prejudice” (MW).

What makes humans special? 

Wollstonecraft argues that they are so because they can reason, possess virtue, and develop knowledge born of experience, i.e., wisdom. 

Yet we can all agree that it is common to see contradictions between 

• what is known to be true and right via reason, wisdom, and virtue, on the one hand,

• and what is conveniently (however subconsciously) believed or desired, and then borne out in action, on the other.

The former may be seen in rare shining examples, and exemplifies what is best in human beings; the latter, what is common in their actions. 

Are Autistic people typically as likely as the average Neurotypical person to deploy the “use of reason to justify” (MW) their self-centered behaviors in this way?  

My personal experience indicates that they are not. To wit, again and again I’ve been told things like “You don’t get complexity” or “This is a grey area,” when to my mind it’s more like I’m not willing to excuse myself or anyone else for building their thinking around rationalizing what they want. Almost invariably the gray area argued for by the gray-area advocate falls in favor of said advocate, e.g., such and such a clearly moral yet inconvenient choice is something that would be a good thing to do, but isn't actually necessary. 

Or someone will tell me I "don't get" something. Occasionally, that's true. Usually, though, I understand, but I don't accept the status quo. Think Greta Thunberg.  

Our generally shared quality of being literal tends to prevent these common types of reasoning and behavior. This is but one of many ways in which a Neurodivergent mind may differ from a Neurotypical one. 

Are Autistic people likely, then, likely to think in iconoclastic and/or highly innovative ways? 

But of course. 

Thus, I contend:

• that whereas both in their disregard for convention and the taken-for-granted, and in their lack of self-justification in conducting themselves as they wish (as is most convenient, easy, desirable, and so on) because they see the inherent contradictions in doing so, Autistic people indeed tend to be more ethical and more original;  

• that the very things they are lampooned for are in fact precious traits that not only further human progress, they further human goodness; 

and

• that their failed efforts to fit in fail because the structures of Neurotypical culture are inherently harmful—not just to we Autistic people, but to all people and to the planet;

the prevailing prejudice that Autistic people are lacking or less-than is patently false. 

Given the current ubiquity of horrible prejudices (in the face of reason), environmental-corporate devastation (against all wisdom), and spurious societal-political-personal phenomena (versus virtue), rational, logical, incontrovertible reasoning combined with original thinking may be our only recourse. 

In Wollstonecraft’s immortal words, “The mind must be strong that resolutely forms its own principles.” Such minds, such worthy human beings, must be cherished and nurtured for the good of all humanity.

Wollstonecraft holds that the apex of our rights and duties involves the “perfection of our nature and capability of happiness.” Autistic people must have opportunities to be their whole selves, and to be happy, if we are to contribute desperately needed new perspectives and ideas. 

Only with genuine equity and equality enabling full participation and self-realization will honoring the rights of Autistics bring these vital contributions to the world.

II. The Plain Version

We can use lots of completely solid philosophical arguments to come to the conclusion that not only are different ways of thinking valuable and often more logically and ethically correct than mainstream ways of thinking, but they may also be the only thing that can save this crazy world right about now. 

As likely Autistic person Albert Einstein said, ““You cannot solve a problem with the same mind that created it.”

This means basic goodness, civil rights, and social justice are not the sole reasons for furthering the human rights and improving the lives of Autistic people. We might even help save the world. 

III. The Original [from Vindication of the Rights of Woman, Mary Wollstonecraft, 1792]

 

In the present state of society, it appears necessary to go back to first principles in search of the most simple truths, and to dispute with some prevailing prejudice every inch of ground. To clear my way, I must be allowed to ask some plain questions, and the answers will probably appear as unequivocal as the axioms on which reasoning is built; though, when entangled with various motives of action, they are formally contradicted, either by the words or conduct of men.

In what does man's pre-eminence over the brute creation consist? The answer is as clear as that a half is less than the whole; in Reason.

What acquirement exalts one being above another? Virtue; we spontaneously reply.

For what purpose were the passions implanted? That man by struggling with them might attain a degree of knowledge denied to the brutes: whispers Experience.

Consequently the perfection of our nature and capability of happiness, must be estimated by the degree of reason, virtue, and knowledge, that distinguish the individual, and direct the laws which bind society: and that from the exercise of reason, knowledge and virtue naturally flow, is equally undeniable, if mankind be viewed collectively.

The rights and duties of man thus simplified, it seems almost impertinent to attempt to illustrate truths that appear so incontrovertible: yet such deeply rooted prejudices have clouded reason, and such spurious qualities have assumed the name of virtues, that it is necessary to pursue the course of reason as it has been perplexed and involved in error, by various adventitious circumstances, comparing the simple axiom with casual deviations.

Men, in general, seem to employ their reason to justify prejudices, which they have imbibed, they cannot trace how, rather than to root them out. The mind must be strong that resolutely forms its own principles; for a kind of intellectual cowardice prevails which makes many men shrink from the task, or only do it by halves. Yet the imperfect conclusions thus drawn, are frequently very plausible, because they are built on partial experience, on just, though narrow, views.

QED. 

Thanks and love,

Full Spectrum Mama

P.S. Here's a video of a recent talk I gave on The #ActuallyAutistic Guide to Advocacy!

SCHOOL TESTING, 2023

When my co-author and I committed to writing back-to-school posts as part of our #ActuallyAutistic book outreach with Jessica Kingsley Press/Hachette, I literally could not think of a better back-to-school message to uplift families than one about the glories of schools welcoming and celebrating our children exactly as they are. 

This post was originally meant to apply to the kinds of testing that children undergo during the U.S. IEP (individualized education plan) process, but it has resonated over the years with parents, educators, and students from all over dealing with standardized testing in general.  

And so, without further ado, here is "School Testing," a personal favorite--and my most read post of all time...:  

Dear Persons,

This spring, I received the voluminous results of a huge barrage of testing for my son G’s three-year evaluation for his IEP (individualized education plan). Among many, many, many other outcomes, I was informed that G had scored under the first percentile in “Irony.”

Although we have had him on a strict Monty Python/Austin Powers program for some time, and the kid has a fantastic sense of humor, we realize that perhaps he may well be lacking in “Irony.” Like many individuals who don’t fit the typical “norms” or test “average” in many areas,   G excels (sometimes extraordinarily) in some areas and is less skilled (sometimes remarkably so) in others.

In my experience, these sorts of test results--lower than expected, very uneven--are actually “normal” for many people on the autism spectrum, people with ADHD, people with sensory processing differences, people who are neurodivergent and/or disabled and/or differently-abled and/or quirky and/or don’t care about testing...

Just once, though, I’d like to receive some test results along the following lines:

Dear Dr. Full Spectrum Mama,

Here are our test results for your accepted-just-as-he-is child.

G scored in the 70^th percentile for “Telling Bad Jokes.” Although we found that his jokes were generally pretty lame, and noted, significantly, that he was almost always the only one laughing at said jokes, his score was slightly lower because he at times did in fact stop telling jokes, especially when asked to “stop repeating that joke which we have already heard seven times.” Still, this is a respectable “Telling Bad Jokes” score, and something he should feel good about.

We noted several areas of growth. G’s “Confidence in the Face of a Lot of Really Daunting Obstacles” outcome has improved by 50 percentage points – to the 88^th percentile - since he was last evaluated in his former school where he was getting bullied. Also improved were his ratings in “Zipping Pants” (up by 20, to 61^st percentile), “Blowing Nose Rather Than Just Letting Snot Drip Down” (up by 15, to 56^th), and “Overall Executive Function” (up by 3, to 4^th).

His “Amazing Metaphorical/Metaphysical Insights Not Necessarily Appreciated by Peers but Mind-Blowing for Adults” score remains very high (92^nd percentile), as corroborated by many of his teachers in the narrative portion of the evaluation; while the closely-related “Willingness to Write It Down According to Assignment, Dangit” score remains alarmingly low (5^th percentile).  

We would also like to raise some concerns around the fact that G’s “Remembering School Stuff” score of 8^th percentile does not seem to match his remarkable achievements in the areas of “Remembering How Many Days I Have Been Dating ___ “ (98^th percentile), or “Remembering the Tiniest Details About Every Pokemon, Ever” (99^th percentile) -  even with a 10% margin of error.

His IEP should reflect the need for accommodation in the former area, yet also take into account the possibility that G may have an asymmetrical range of priorities specific to his own...priorities.

Some of his strongest scores were in “Wonderfulness” (85^th percentile; this score was mitigated by “Teenage Rote Sullenness” [45^th]); “Interest in Girls” (98^th percentile; this test is administered according to self-reported sexual preference and controls for Trying-to-act-like-you-are-not-thinking-about-____-All.The.Time); and “Thinking About Pokemon” (90^th percentile; down nine points from previous score - possibly offset by “Interest in Girls”). “Knowing the Names of Pixies, David Bowie, Nirvana, and Red Hot Chili Peppers Songs,” at 65^th percentile, was also solidly above average. 

He should continue to build on these strengths.

Although he scored just above average in “Teenage Boy Flatulence” (58^th percentile), when measured against the general population G’s gassiness was easily in the top 10%.

Most importantly, for being unfailingly kind and polite (even thankful!) to our extensive testing staff, and for countless other reasons, G scored off the charts (above the 99^th percentile!) in “Being Himself.”

Congratulations,

The Testing People

Love,

Full Spectrum Mama

A SERIES OF HUMBLE REQUESTS #3*: Please stop calling autism a disease.

 

Please stop calling autism a disease.

Disease is defined variously as “(an) illness of people, animals, plants, etc., caused by infection or a failure of health rather than by an accident” (Cambridge), or “an illness affecting humans, animals or plants, often caused by infection,” (Oxford). Some broader definitions talk about genetic defects or abnormalities, but all of them refer to a problem.

 

Similarly, consider definitions of the term “syndrome”: “a group of signs and symptoms that occur together and characterize a particular abnormality or condition” (Merriam-Webster), or “a group of symptoms that together are characteristic of a specific disorder, disease, or the like” (Dictionary.com)—“symptom” meaning, of course, “a physical or mental feature which is regarded as indicating a condition of disease” (Oxford). 

Even the word “diagnosis” is problematic. After all, if we sidestep its medical implications, it still directly refers to something negative. 

Do these sound like great ways to characterize a substantial portion of the population? 

 

I personally would like to disease-ify and stigmatize discrimination, cruelty, greed, selfishness…—things that cause harm. Or what about those people who cut in front of elderly people in grocery lines because they’re “too slow,” or wear shirts that say “Y’all are wrong, but Jesus loves you anyway,” or don’t pick up their dog’s poop? Can we pathologize them?

 

But frame Autistic people as fundamentally (medically/physiologically) compromised or flawed? Not so much. So let’s say, for the many reasons outlined above and below, that we agree to stop referring to autism as a “disease” and the like (e.g., a “syndrome” or “disorder”). What, then, is it? Is it a personality type? A genetic and/or epigenetic difference? A disability? Is it a debilitating condition, a superpower, or simply a way of being human…or perhaps all of the above, sometimes? 

There are a lot of ways to approach this question, some uplifting, some harmful, others more neutral. But there are many, many reasons to stop using such terms in interpersonal interactions, even before we’ve definitively decided how to define autism. As just one example, autism is sometimes referred to by medical and other professionals as a “disorder” because, as determined/judged by neuro-normative methods, we Autistic people can sometimes be “out of sync” with what is considered “typical” or “normal.” Yet we ourselves may experience the neurotypical world as disordered! 

For many of us, autism is an identity. It’s what helps us make sense of ourselves and of the world. 

If we are to be literal—and hey, you know me—autism is a neurological difference. 

But despite these basic facts, there is a prevailing stereotype among many people that Autistic people have a (presumably chronic) disease, and/or that there is “something wrong with us.” And commonly used pathologized language reflects this bias. 

To be clear, I’m trying to address approaches to Autistic neurodivergence in mainstream culture and personal relationships. I do understand that the current medical-professional model holds that autism is a “disorder,” and that (regardless of my opinion on the matter) this model helps some specialists conceptualize their work and may at times help them help the people they are working with. 

But I am in here. In this body-mind. And I know who I am. 

I am a person with a particular kind of brain. A brain that may not be “typical,” but one that gives me what I have come to see as great strengths, including moral, ethical, intellectual, and other gifts that to me far outweigh the “deficits” NT norms foist upon me. There is nothing wrong with me.

There is nothing inherently wrong with any Autistic person. 

Again, I get that there are contexts in which a medical perspective can be helpful, even necessary. Everyday conversations and interactions, human to human, are not those contexts. And yet the disease-ification of autism is disturbingly persistent in daily life.

The medicalization of this neurodivergent way of being is in large part driven by the autism industry—mostly well-meaning, mostly neurotypical people who are in large part trying to teach Autistic people how to not be Autistic (or, at least, to be less Autistic). In some cases, preying upon parents, especially of the newly-diagnosed. Sometimes inflicting pharmaceutical treatments, quack “health” remedies, invasive therapies, and more, with the goal of “fixing” Autistic children, youth, even adults. 

This enterprise directly shapes public perceptions of autism.

Much of the autism industry would indeed have us believe autism is not only a sort of disease, but one that can be both prevented and cured.  Except insofar as parents who fit certain autism-“causing” criteria can indeed decide that they don’t want to reproduce, both groups are incorrect.** 

Of course, there are countless ways we can improve our lives, by, for example, tweaking our sensory environments, evolving our ways of interacting, developing technologies that allow nonspeaking people to communicate if they choose to do so, or promoting more inclusive schools. And professionals can certainly sometimes play a role in these beneficial changes. 

That doesn’t mean we need to be “fixed.” 

It means we need certain changes so that the NT-designed world isn’t disabling to us. 

But addressing autism is a many, many billion dollar industry, from diagnosis to treatment. Professional gatekeeping alone (diagnosis, evaluation, development of treatment standards and academic, federal, state, and other protocols) accounts for billions.

Most parties involved are truly trying to help people. But good intentions do not necessarily make for good actions. The interventions on offer run the gamut from scaffolding healthy growth in the direction of each individual becoming their best self (and hey, that’s wonderful—we all need that!) to discriminatorily and cruelly forcing people to undergo experiences and act in ways that actively harm them as unique beings. 

Do these latter interventions work? Generally, no, although masking and other “passing” skills can sometimes be learned—usually at great personal cost.

It can be disturbing to look at the numbers—the glut of autism professionals, the enormous quantities of money generated—in the autism industry and then consider how few #ActuallyAutistic voices are represented in it. In my outreach to promote our first advocacy book, I have had an extremely high response rate for consulting and speaking…except with for-profit autism organizations led by neurotypical experts.  

Gripes about the autism-industrial complex notwithstanding, people in general, in day-to-day life, need to know that people are involved here. We are not sick. We are whole, growing, human beings who want you to understand that Autism is not a disease, it’s a difference, a somewhat common expression of humanity. 

So, family, friends, partners, educators, professionals, please join Autistic people who hope to be seen as fully valid, equal, worthy human beings just as they are in refusing to use disease-oriented language that mischaracterizes and degrades us. Here’s a quick list why:

1. Calling autism a disease or insisting it is a syndrome or disorder (please see above explanations of how the latter term arises, as well as when it might be provisionally appropriate) intrinsically marginalizes—and often hurts and demeans—Autistic people, especially when such language is used in interpersonal interactions.

2. Imposing a disease framework on Autistic neurology pathologizes a common neurological difference. This medicalized perspective inherently indicates a need for treatment, thereby implying, incorrectly, that Autistic people can and should be “cured.” 

3. Referring to autism as a disease (or similar) implicitly supports branches of the lucrative autism industry that oppress, marginalize, and discriminate against Autistic people.

4.Choosing to use inclusive, respectful, non-pathologizing language as a default does not preclude deploying medical (or other) terms when requested based on personal preference or mandated for access and/or equity. 

5. Removing the “disease” designation puts the onus on the public—including governments, schools, universities, organizations, and other institutions, as well as NT individuals—to look at ways environments and cultures can include and uplift people of all neurologies, rather than expecting us to justify and change ourselves to suit the "normal" mold. 

6. Replacing the assumptions underlying such language with an inclusive, pro-neurodiversity mindset creates space for unconditional acceptance and contributes to a culture that encourages and celebrates the unique, diverse strengths of all humans.

 

Thank you so very much!!!!

Love,

Full Spectrum Mama

* A SERIES OF HUMBLE REQUESTS:

After my book came out and I began to be a bit more in the public eye, I realized there were three recurring issues I wanted to address in this safe space so that I could refer people to my opinion on the topic without having to go into it on the spot. Like many Autistic people (and others, too, I am sure), I have a hard time thinking AND feeling AND speaking at the same time. 

There are certain questions and uses of language put forth mainly by neurotypical people—in my experience, not just via media outlets, but also audiences and, actually, friends—that the vast majority of neurodivergent people find extremely offensive even when they are not meant to be hurtful. In this series of three posts, I’m going to focus on three of these: saying “Everyone is a little Autistic,” asking about our diagnosis, and referring to autism as a disease, or similar. 

My book with Jenna Gensic, The #ActuallyAutistic Guide to Advocacy, is full of positive, proactive ideas, but sometimes I do get frustrated—and this blog has been known to contain a vent or two. Jenna and I used to feel really anxious, and sometimes defensive, when people would call us out on mistakes we’d made (with language, assumptions, etc.), but we eventually came to genuinely see such interactions as learning opportunities. Now we explain—in our books and to our audiences, as I am doing here, now, at Full Spectrum Mama—that we are always discovering how to communicate and act in more uplifting ways. 

While first writing this series of posts, I was going to call it “Stop it!” And please do stop, if you are doing any of these three things. But I took some deep breaths and changed my wording to be a bit friendlier, in hopes that lots of people will take in this guidance as helpful and heartfelt, as it was intended. After all, we are here together on this planet to learn and grow!

The above is the third and final offering in this series.

Next up: I’m digging into two different trains of thought: 

for one, a series of three essays on employment:

·      Seeking welcoming work environments

·      Disclosure and asking for accommodations

·      Dealing with corporate and institutional environments; 

and for another, a long piece or series on Autistic biologically born female humans. 

I’m not sure when these will be done—there is a lot going on in the Full Spectrum family!—but I am working on them. Thanks a bunch for reading!

** Last spring, instead of publishing a ready-to-go article on our advocacy book, Columbia Magazine (citing space issues for the topic of autism) chose to publish an article about autism-prevention research. Literally. The original subtitle was “How to prevent autism,” but there was plenty of outcry over that and they changed it. They also graciously included my rather frank opinion on the prior piece when they did publish a profile of me focused on The #ActuallyAutistic Guide.

A SERIES OF HUMBLE REQUESTS #2*: Please stop asking about our diagnosis.

Please stop asking about our diagnosis.

 

I received an autism diagnosis in my late 30s. It was a non-event. I literally don’t think I told anyone. 

I already knew I was Autistic. 

I was, at the time, being diagnosed and treated by a psychologist for CPTSD (complex post-traumatic stress disorder, stemming from long-term and varied trauma), and did not then (or ever) view my neurodivergence as something to “fix.” I was also going through a divorce, move, autoimmune disease diagnosis, and career change…as a single mom. So just getting through a day without a family disastrophe felt like a win.

As well, a professional diagnosis meant less to me than it might to others: Like many Autistic people, I tend to not respect authority or pay attention to hierarchy. This tendency has done wonders for my career!**

The diagnostic process my son went through with a pediatric neurologist around the same time was much more intensive. It was also way more important because, as an elementary school student, his specific diagnosis would impact his life immensely as far as school learning, social development, and more over the entire course of his education.

As it turned out, those school years required an enormous amount of advocacy on my part, during which I came upon many things (information, Autistic activists) that enabled and empowered me to think critically about the role the neurotypically-designed/-oriented world plays in the success—or lack thereof—of neurodivergent people in all their endeavors. 

The diagnostic process, for example, is fundamentally grounded in neuro-normalized values and skills; that is, the measures and tools used for evaluation are determined and shaped by neurotypical standards, which may not be shared, understood, or considered worth aspiring to by the neurodivergent human being evaluated. 

A diagnosis can thus be potentially demeaning and marginalizing, even as it may feel like a clarification or open certain otherwise-closed doors for the Autistic person. 

Such diagnoses are officially required for people to officially qualify for certain public/insurance/government/medical/employment/educational accommodations and/or services that exist to create equity. 

But the diagnostic process is often extremely grueling for the human being getting diagnosed, as it very much was for my son. Worse, those official designations typically require further evaluation and corroboration at designated intervals or during transitions (say, from the public school system to adulthood), so that the process is partially or fully duplicated, thereby repeatedly reinforcing differences and, at best, making the humans involved feel like laboratory specimens.

I was already cooked. I had seen and made sense of myself through the lens of autism for more than a decade already, proudly considering myself self-diagnosed all along. So I didn’t expect my autism diagnosis to change anything (I did hope my therapist could help me heal some of the devastating and debilitating effects of my PTSD). I also—thinking a full neuropsych evaluation was the only way to “legitimately” diagnose autism by NT standards—didn’t feel a need to share my “new” “status.”

For many, a diagnosis feels like a validation, a structure on which to rest big feelings. Armor, in a way. For others, though, it can be a burden. Something to hide—or avoid in the first place. For most of us, it’s a mixed thing, carrying as it does all the public and private positives and negatives of any label that represents difference. 

But, in contrast with the aforementioned exceptions—in which disclosure and “proof” are deemed necessary in order to receive equity-promoting services or accommodations—sharing a diagnosis (or lack thereof) is not a given or required part of the social sphere. It’s fundamentally a private matter.

Furthermore, asking us to explain, define, discuss, or defend our diagnosis (or, again, lack thereof) is just a step too far—unless we offer. 

So while curiosity and the desire to better understand a person or their neurology (or neurodivergence in general) may fuel your desire to ask about our diagnosis, that interest would be better spent in doing your own research and/or just practicing plain old acceptance. 

Trust me, if we want to share, we will. 

Here’s a handy list of reasons why asking about our diagnosis might feel upsetting, invasive, inappropriate, or offensive, even if your intentions are good:

1. Another person’s diagnosis is nunya. What’s nunya? Nunya business. I understand that I, as a “public figure” have some responsibility to share my diagnosis, but in my personal life? Not so much. And others not in my position have no obligation to disclose their diagnosis except where personally, professionally, medically, and/or educationally necessary.

2. People make assumptions about who people are, as well as what they need and are capable of, based on almost any diagnosis or label, but especially this one. For this and many other reasons, it should be up to us to choose disclosure—or not.

3. Autism, while framed as a medical condition by some (please see the next post in this series, coming in October 2022), is actually an identity for many. You don’t ask me to prove I’m a yogi or a writer or a mom or queer or politically progressive…Why would you ask me about the corroborating details of my neurology? 

4. Not everybody can afford, access, or handle (emotionally, sensorially, physically, psychologically…) the diagnostic process. 

5. Putting a lot of weight into diagnosis amplifies and perpetuates the disease model of autism (again, please stay tuned for the third post in this series). Also, although it may have its uses, the word “diagnosis” itself (especially when used in interpersonal interactions) can make it seem as if there’s something “wrong” with us.

6. Self-diagnosis is largely affirmed and respected among Autistic people. Insisting on a professional gatekeeper’s opinion diminishes this neurodivergent community’s authority, as well as the validity of personal insight. 

7. Asking about our diagnosis can feel othering. This is especially hard because many of us already feel like we are on the wrong planet. 

8. Corollary to the statement “We are all a little autistic” is the accusation or “compliment” (from this Autistic’s perspective, both angles are equally messed up) “You don’t seem [look, act…] Autistic.” Biologically born female Autistics are underdiagnosed, and often experience and express their neurodivergence very differently from the common stereotypes of the “typical” Autistic person. Furthermore, all biologically born Autistic females—along with biologically born male, trans, nonbinary, and, in short, all Autistic people—are unique human beings, and therefore may or may not represent your vision of autism. That doesn’t give you the right to explore, never mind question, their identity and/or diagnosis. 

Now, if you want to ask us—person-to-person—who we are and what we care about as a fellow human being in this challenging, beautiful, crazy, neurotypically-oriented world, go for it. 

Thank you!!!!

Love,

Full Spectrum Mama

 

Labels: diagnosis, stereotype, labeling, awareness, acceptance, biologically born female Autistic, Autistic, #ActuallyAutistic, neurodiversity, privacy, curiosity, burden, chocolate,

 

* A SERIES OF HUMBLE REQUESTS:

After my book came out and I began to be a bit more in the public eye, I realized there were three recurring issues I wanted to address in this safe space so that I could refer people to my opinion on the topic without having to go into it on the spot. Like many Autistic people (and others, too, I am sure), I have a hard time thinking AND feeling AND speaking at the same time. 

There are certain questions and uses of language put forth mainly by neurotypical people—in my experience, not just via media outlets, but also audiences and, actually, friends—that the vast majority of neurodivergent people find extremely offensive even when they are not meant to be hurtful. In this series of three posts, I’m going to focus on three of these: saying “Everyone is a little Autistic,” asking about our diagnosis, and referring to autism as a disease, or similar. 

My book with Jenna Gensic, The #ActuallyAutistic Guide to Advocacy, is full of positive, proactive ideas, but sometimes I do get frustrated—and this blog has been known to contain a vent or two. Jenna and I used to feel really anxious, and sometimes defensive, when people would call us out on mistakes we’d made (with language, assumptions, etc.), but we eventually came to genuinely see such interactions as learning opportunities. Now we explain—in our books and to our audiences, as I am doing here, now, at Full Spectrum Mama—that we are always discovering how to communicate and act in more uplifting ways. 

While first writing this series of posts, I was going to call it “Stop it!” And please do stop, if you are doing any of these three things. But I took some deep breaths and changed my wording to be a bit friendlier, in hopes that lots of people will take in this guidance as helpful and heartfelt, as it was intended. After all, we are here together on this planet to learn and grow!

The above is the second in this series.

** Irony.