Guttentag | 23-30




Positive Approaches Journal - Volume 2 Title

Volume 11 ► Issue 4 ► February 2023



The Complicated Language of Autism Advocacy: Learning to Use Our Words

Rachel Guttentag


I am a self-advocate. I am on the spectrum. I am autistic. I am disabled.

These are the words, the labels, I choose to use for myself.

Though person-first language (person with autism) was long thought to be the most sensitive way to phrase things and remains the recommended phrasing in some circles, the rise of identity-first language has become an undeniable hot-button topic. It is a growing preference among autistic self-advocates to be referred to as an autistic person (or just autistic) rather than a person with autism. Unlike others, I don’t stringently hold to this phrasing. You will sometimes find me switching between the two when I write depending on what flows better. Still, I resonate with the idea that autism cannot be separated from me the same way you would want to separate a person with cancer from the disease killing them. We may not say “cancerous person,” but the reality of autism is more complicated than a disease infecting its host. Unlike the attention deficit hyperactivity disorder (ADHD) I also struggle with, I cannot conceive a version of myself if I did not have autism. I cannot envision it being neatly removed. I would not be the person I am without it, for both better and worse. There is no clear way to separate its symptoms from simply me being me. It is the lens through which I have always viewed my reality. I have lived with it my whole life, and it has shaped me accordingly, even in the ways it has made that life harder.

So, I choose to call myself autistic.

I call myself disabled because, to me, it is empowering. As many so-called “high functioning” (another term on the outs) autistic people were once handed the now defunct label of Asperger’s (aka autism-lite), the idea that I may not “seem” disabled or that I am indeed not “truly” disabled has been used against me. It has been used to push me past my limits until I burn out, to convince me I should be able to behave like a neurotypical and fill me with guilt when I do not.

Sometimes, after wondering for so long what is wrong with you, it can be a relief to realize there is something “wrong” with you. That you are not just lazy, clueless, childish, or hysterical. I have a disability. Just because others may not understand the ways in which I struggle does not mean those struggles are not real. Some things are hard for me, even impossible, that may seem trivial to other people. That is okay. There should be no shame in knowing my limitations and refusing to let others push me past them when I know it will not help me. I find power in being able to say, “I am disabled, I need help” just as much as in saying “I can do this on my own”.

And yet there are others on the spectrum who have completely different preferences than me. There are still plenty of self-advocates I encounter regularly who prefer person-first language. They do not want to be defined by their disability, which they feel identity-first does, and balk at being called disabled for similar reasons. A common argument I hear from them is that they want to be seen as “more than my disability” and so resist identifying too strongly with said disability. They are a person, not a diagnosis. They also point to the negative public perception of autism, usually based on the very limited and stereotyped media portrayals of it, as a reason not to want to be called autistic. It can sound more like an insult to them, and indeed some may have experienced the word being thrown in their face that way by ignorant people. For similar reasons, some originally diagnosed with Asperger’s are unwilling to give up the now outdated label for the far more stigmatized autism. At the other extreme, there are those who are enraged by autism being referred to as a disability at all. They maintain that autism is only disabling in a society not built to accommodate it and that calling autistic people disabled only serves to unfairly stigmatize those who simply have a different way of thinking. Similarly, these people may decry overly clinical language when discussing autism. They would undoubtedly object to my using the word “symptoms” in this essay. Their argument is that autism should not be talked about as a disorder or disease, and any language that implies as such is alienating and ableist (i.e. discriminatory against people with disabilities).

Even things one might imagine to be neutral terms have hidden discourse lurking around them. The term neurodiversity is something I have seen used more and more as a catch-all term for conditions like autism and ADHD that can be employed without causing much fuss from any side of the various label debates. And for the most part, this is true. I find it can be a useful term, especially when paired with its counterpart of neurotypical. It makes it easier to discuss how “normal” people think and behave vs. “abnormal” people without using either of those extremely loaded words. It is a way to talk about people who are different without the implication that those differences are bad. However, I feel some discontent around the term when it is used too much in autism support and advocacy spaces. I was surprised some months ago when other self-advocates I was with on a panel discussing that very term felt the same. The shock was mutual all around, all of us assuming we would be the odd one out. In short, the term has become so broad (beginning to encompass almost everything found in the Diagnostic and Statistical Manual (DSM) in some circles) that using it in spaces specifically for autism can feel pointless. Or as if the actual condition being discussed is obscured. It sanitizes autism for those ill at ease with the diagnosis, putting it under the umbrella of a bigger term even when that umbrella is not needed. The consensus that day seemed to be “if you mean autism, say autism”. Even so, I understand why it is so widely used, and I doubt that will change anytime soon. This is only one example. Many times, I have encountered people objecting to terms I think of as neutral or harmless, sometimes even positive. I recently heard objections to the term self-advocate, which I admit left me confused. Especially since the person who initially mentioned those objections to me may have thought these reasons were self-explanatory and so did not offer much follow-up. The moment stuck with me, and I’ve tried to piece together why such a term may be objectionable since. Like many things, I am sure there can be multiple reasons. The one I understand best is perhaps the way in which such a term automatically “outs” the person it is applied to as autistic. I myself have lately started referring to my job simply as “disability advocate” in situations where I would rather avoid the potential ableism  self-identification can bring. I have also seen articles and lists attempting to compile the “correct” wording to use for everything related to autism. In them, I see terms facing the axe that I would never have before considered. Things like “special interest” or even the “low/high support needs” terminology I and others have been championing as a replacement for “functioning” labels have their objectors. Honestly, I could likely point to any term or label used or seen and discuss objections raised against it. Fortunately for both of us, I have a page count limit.

Ultimately, there is a futility in attempting to compile an exact list of words that everyone should use to describe the autistic experience. What speaks to one person may alienate another. It can be frustrating for me when it feels like other self-advocates fail to recognize this. I have dealt with another self-advocate brushing off wording I have approved as “stigmatizing” or “ableist” without thought to the fact another autistic person saw those words and was fine with them, or even that I might object to the wording they prefer. I think we would all benefit from learning to articulate “I do not like this wording” or :this wording makes me uncomfortable” without resorting to declaring it ableist and unacceptable in all contexts just to have our concerns taken seriously. There are nuances to be found outside of attempting to exorcise our vocabulary of any and all language that may have problematic implications.  Just using the right words will not erase ableist attitudes on their own, or even stop the people using them from being ableist. Ableism takes a far more damaging form in people’s actions and attitudes than it ever can in just their words alone. It is true that the words people use can often betray or influence their attitudes but focusing only on changing their language is merely wallpapering over those attitudes instead of truly challenging them. I am tired of hearing advocacy organizations fret about their image more than they seem to think about their actions. Whenever I hear endless talk about updating logos and banners and whatever other branding to make sure they have an infinity symbol instead of the dreaded puzzle piece or making sure it is “autism acceptance” month now where we must wear red instead of blue, I want to gnash my teeth. “What does it matter?” I want to shout. Oh, I am sure it does matter a lot to many people, don’t get me wrong. They want at least surface-level proof that these organizations recognize that the much-maligned Autism Speaks is not a group to emulate. But I have seen at least one organization do this and yet still entertain discussions about “curing” autism. I would rather see slightly tone-deaf good intentions than the same ableism being covered up with top-notch public relations. I want these organizations to do the hard work of changing their priorities to reflect what the autistic community wants and needs from them before they start worrying about infinity symbols and puzzle pieces.

From all I have written so far, you would probably assume I am driving toward the argument that these language debates are pointless and that we should focus on things more important than trying to police what everyone says. But that is not the whole story, not for me. People who know me and have worked with me have heard me voice my opinions on what words I think should and should not be used. It would be hypocritical of me to pretend otherwise. Though I have tried to go along with and push the attitude of “let people use whatever language feels right to them,” I still find myself chafing against this at times. While it is an important sentiment that I think is ultimately beneficial to autism advocacy discourse, it can be used as a “get out of jail free card” when examining our own biases. It can shut down potential discussions and explorations of internalized ableism, which does not go away if we all pretend it’s not there. Or even just ableism in general, when interrogating why some neurotypicals want to talk about autism in certain ways. There is always value in questioning why we use the words we choose to use. It is an important step towards actually challenging deep-seated ableist attitudes. It is just a question of carving out appropriate times and places to have these discussions, instead of just constantly squabbling with each other over word choices. I will never stop trying to urge people to consider why they feel uncomfortable around certain words while preferring others, and whether their reasons are as black and white as they want to believe.

This goes double for those who are not on the spectrum. Just because I have spent this entire essay arguing that reality is more complicated than choosing between “good” and “bad” words, that does not mean there is no such thing as ableist language. Words can be used in hurtful ways, but the attitude behind those words is even more hurtful. While intra-community discourse is complicated enough, it can admittedly become even uglier when non-autistic voices weigh in. An autistic person not wanting to be referred to as disabled is a different scenario from a neurotypical parent objecting to that word due to their own negative perception of disabilities. And while I think overall it is better to leave squabbles over small language choices at the door when we can, neurotypical advocates are as much responsible for the creation of a healthier discourse around language as any self-advocate. Partially in response to how heated these debates can get, I have seen neurotypical parents and experts become (however unintentionally) outright cruel in their defensiveness when challenged. A big tactic I have seen lately is dismissing the struggles of outspoken self-advocates who argue with them, downplaying their experiences as “not severe enough” to speak on the topic of disability. Even lately pushing the label of “profound autism” which seems designed to separate these (presumed low support need) self-advocates from those on the spectrum who “suffer more” and thus preventing them from being a part of the discussion when it comes to autistic people with very high support needs. Muscling self-advocates out of spaces they belong in is not the answer, however much you disagree with them. This should not be the next step in the language of autism advocacy. We are all capable of treating each other better than this. 

There are some who will see this essay as unfair and biased. I cannot deny that it unavoidably is. I can only speak for myself, for my opinions and experiences, which is a big part of the issue I am attempting to tackle here. I have seen more harm than good come when attempts are made to speak broadly for others. Yet that is the whole point of advocacy, isn’t it? There are those unable or unwilling to lend their voice. Or even just uninterested, wanting to live their lives as their own person instead of being forced to represent a greater community. But activism requires some of us to speak, and so we are forced to speak for these unheard people in order to advocate for them. It is an imperfect and messy situation, so the words we use are often doomed to be imperfect and messy. What matters is why we use them, and how they are heard.





Biography

Rachel Guttentag graduated from Temple University with a Bachelor’s in Psychology in early 2019, participating in the first-ever community autism peer specialist (CAPS) training cohort later that year. Currently, she works with the Philadelphia Autism project on their board of advisors and on other projects, hoping to lend her voice and perspective as a self-advocate. Additionally, she works freelance with other organizations and researchers looking for that same voice and perspective. She hopes to complete a Psy.D. program in the future and use her personal experience and academic training combined to help bridge the gap between experts and the greater autism community. You can find more of her writing in her blog posts published by ASDNext.

 


Contact Information

Rachel Guttentag

Philly Autism Project

Autistic Self-Advocate 

ryerguttentag@gmail.com