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.