Monday, October 24, 2022

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.

Monday, September 26, 2022

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. 


 

Monday, August 15, 2022

A SERIES OF HUMBLE REQUESTS #1*: Please stop saying “Everyone is a little Autistic.”


Please Stop Saying “Everyone Is a Little Autistic.”

 

Autism is an expression of the way human brains can grow. 

While the medicalization and professional gatekeeping around autism pose challenges and injustices of their own, they have resulted in a definitive description of this particular form of neurodivergence.  

Autism is officially defined as a “disorder” (lots more on this language in the third post in this series!) involving two key developmental differences, one broadly involving social communication and the other encompassing repetitive and/or intensive behaviors and/or foci, as well as sensory differences. 

EVERY Autistic person—whatever their support needs, how they refer to themselves, etc., etc.—shares these two neurological traits to a certain degree. And if you don’t? You’re not Autistic.

Sure, you may well be neurodivergent in some other way, and perhaps you’d like to explore that possibility on your own or consult with a professional. Or you may be neurotypical. We are all growing and learning about ourselves and others, so investigating aspects of language and neurology as part of that journey can be helpful for everyone.  

And there certainly is a spectrum of ways of being human, with some of us a little more awkward or smooth, quirky or conventional, obsessive or detached, introverted or extroverted, and so on. But that proves we are indeed “all on the human spectrum,” not that “we are all on the autism spectrum.” 

I’m willing to bet the majority of Autistic people have heard someone (usually, more than one someone) say a variation of this phrase. 

One reason it stinks when we hear those words is that we also often hear people referring to autism in pejorative or discriminatory ways. So it’s like you want to be in this club when it suits you, but otherwise, no thanks…If that’s the case, are you really uplifting and including Autistic people? 

Another reason is that some people will find ways to write you off because of your neurology—which would not be the case if we actually were “all on the spectrum,” right? They’ll say (or think) “Oh, they’re just saying that because they don’t get it,” or “You’re being black and white again.” These kinds of judgements allow people to devalue or dismiss your opinion as inferior to theirs (or to the mainstream viewpoint). 

Trust me, even as someone with a fancy doctorate and extensive experience teaching ethics and philosophy I still get this, even from people who are close to me. And it hurts. 

On a very basic level, if your lived experience doesn’t entail these kinds of discriminations, stating that you are/everyone is “a little Autistic” is…not helpful. 

Giving us a list of all the “weird” stuff you do (much of which typically has nothing to do with autism) to “demonstrate” your “autism”…also not helpful. 

By the way, everyone is “a little weird.” This one likes peanut butter-cheese-kimchi sandwiches; that one loves listening to Kenny G or enjoys doing interpretive dance. Some people don’t like puppies (???). Some don’t like people (more understandable). Others genuinely believe they have been injected with alien DNA. But I digress.

I’m sure many Autistic people could add to my reasons for why this phrase is problematic, but I’m going to add just one more here: Autistic people were not put on this earth to explain and define autism to others, never mind offer their “autism credentials” to every person who doesn’t know what autism entails. The latter is particularly arduous for those of us who, whether by choice or trauma, have become more adept at masking. 

I’ve taken on an “explainer” role in my blog and books in part because of my frustration over misperceptions and ignorance around neurodiversity, but even I get tired of having this role imposed on me. In brief, a diagnosis—whether via a professional evaluation or a serious, informed, deeply considered self-diagnosis (I’ll cover this topic in the second post in this series)—is probably the best way to tell if you are #ActuallyAutistic. 

I do not know why people feel compelled to tell me they are/everybody is “a little” Autistic when they are not. Are they trying to be inclusive? Kind? Are they actually ignorant? Dismissive of the very real challenges of being Autistic in a neurotypical world? Another motivation? 

Someone I was discussing this with suggested many people are eager to be exceptional in some way. So it’s also potentially part of a…special snowflake competition? 

I don’t know. 

And, to be honest, it’s exhausting to have to consider intent every time someone says something along these lines. Especially—and factually, literally—since it’s nonsense. We are not “all on the spectrum.” 

Now, obviously, neurotypical people are not monolithic. They are as different from each other as they might be from any Autistic person. What they are not…is Autistic.

And so, dear readers, if you have innocently used this phrase and/or others like it, please reconsider next time—and don’t. We know you aren’t trying to be upsetting, but…

Here’s a quick list (you know I love my lists) why we’d like you to abstain:

1. Saying “Everyone is a little Autistic” is factually incorrect.

2. It silences and diminishes the real lived experiences of Autistic people.

3. It ignores the social, professional, political, and other discriminations and personal challenges Autistic people must contend with daily that non-Autistic people do not endure.

4. It places a burden on Autistic people to clarify definitions and emphasize their own differences.

Thank you so 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 first in this series.

 

Wednesday, January 19, 2022

BOOOOOOOOOOK!

Dear Persons,

 

I hope this finds you cozy and well despite these challenging times.


As Madeline, Judy, Celeste, and I convened for the first time 10 years ago (this month!) to discuss our initial writing group submissions, we could not have imagined what we would all go through in the following decade—or the world we would live in today.

 

Nor would I have dared to dream that the wee blog I began that day would grow to have hundreds of thousands of readers interested in neurodiversity...and ultimately result in a book collaboration that means the world to me. 

 

I'm over the moon to let you know that my first book with Jenna Gensic, The #ActuallyAutistic Guide to Advocacy: Step-by-Step Advice on How to Ally and Speak Up with Autistic People and the Autism Community, is available for pre-order here

 

Please stay tuned for more release information and reach out (my email is jineffable@gmail.com) if you'd like to help spread this book's message. We believe this text will serve Autistic people themselves, as well as families, educators, therapists, caregivers, friends, partners, employers, and anyone else who'd like to know more about Autistic perspectives.

 

In addition, we've begun work on our second book, The #ActuallyAutistic Guide to Teen and Young Adult Advocacy and Activism: Step-by-Step Advice for Autistic Youth and Those Who Care About Them. 

 

We're asking all interested Autistic teens and young adults to fill out our survey. Here are the links if you fit this demographic or know anybody who does (please only fill out one version):

 

SHORT survey: https://forms.gle/qKRmuAVsCCwEAF4A9

LONG survey, for people who really like writing: https://forms.gle/FYhmxMmvoYWpcX1e7

 

Thank you so much for being a part of this journey to spread inclusion and awareness!


Love,

Full Spectrum Mama

Goodreads Book Giveaway

The #ActuallyAutistic Guide to Advocacy by Jenna Gensic

The #ActuallyAutistic Guide to Advocacy

by Jenna Gensic

Giveaway ends April 30, 2022.

See the giveaway details at Goodreads.

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