What we don’t talk about when we talk about the “deficits” of autism

Most of what most people know about autism is that it’s defined by “deficits”—what autistic people can’t do, or don’t do very well. Like. Literally. Autism is literally defined in the DSM by “deficits.” (Notice, too, that the DSM diagnostic criteria is written with only children in mind.)

Screenshot from the CDC's website stating the DSM diagnostic criteria for autism. The heading reads: Diagnostic Criteria for 299.0 Autism Spectrum Disorder. The body of the text reads: To meet diagnostic criteria for ASD according to DSM-5, a child must have persistent deficits in each of three areas of social communication and interaction (see A.1. through A.3. below) plus at least two of four types of restricted, repetitive behaviors (see B.1. through B.4. below).

Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive; see text):
Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

The sentences that contain the word "deficit" are highlighted in yellow.

These so-called deficits aren’t deficits. They’re differences. We autistics don’t inherently lack humanity. We’re not less human. We just do shit differently, and have different needs. Difference ≠ deficit. Different ≠ deficient.

(Side note: Despite the specific stereotype that we’re “bad” at communication, we’re not. Research shows that we communicate differently, not deficiently. This is known in the literature as the double empathy problem. You can read an overview of the double empathy problem on the UK’s National Autistic Society website (please never ever get your autism information, news, or research from the US’s Autism Speaks—it is a pro-eugenics hate group). For those of you who prefer academic writing, there’s also this 2020 research paper that reviews the double empathy problem. Basically, the double empathy problem states that autistic-to-autistic communication is as “successful” as allistic-to-allistic communication, and in a mixed group, the trouble in understanding goes both ways. It’s akin to speaking different languages.)

The words we use matter. Language drives perception, and perception is reality. It influences how people—our family members, professional acquaintances, healthcare providers, etc.—treat us. It shapes policy and access and opportunity. It influences funding—how much money is spent, what it’s spent on, and who gets to spend it. Because the “official” language used to describe autism is deficit-based, many (most?) non-autistics think of autism and autistic people in terms of deficits—and outright failures. This harms—and, more often than you might expect, quite literally kills—us.

What we—and by “we” I mean “y’all”, non-autistics—don’t talk about when we talk about the “deficits” of autism are the actual deficits of autism.

So let’s talk about some of them.

Let’s talk about the deficit of kindness, compassion, and actual understanding in the language used to describe autism and autistic people—in the DSM, and by the world at large—and how this type of deficit-based and pathologized language perpetuates negative stereotype and stigma, and harms #ActuallyAutistic people.

Let’s talk about the deficit of non-autistics who listen to us when we tell them what language we prefer; that ABA is abuse; what resources, services, supports, and accommodations we need.

Let’s talk about the deficit of non-autistics who actively center and platform autistics instead of speaking or writing over us. Y’all think you know better. You don’t. Your experience of an autistic person is not the same thing as—or more important than—an autistic person’s lived experiences as an autistic person. You cannot claim to care about a community, or to design something for a community, without centering that community’s needs as defined by that community. We are so often silenced and spoken over by allistics, many of whom claim to be allies (“allies”) even as they refuse to let us speak for ourselves, or to listen to what we have to say when we do manage to sneak a word in. If you want to be an ally, use your resources to help center and platform us, not to speak over and silence us.

Let’s talk about the deficit of professionals—medical workers, mental health providers, educators, etc.—who actually know what autism is and isn’t, and the harm that’s caused by their constant conflation of autism with other, separate disabilities that commonly co-occur alongside autism. I’m looking at you, people who use functioning and severity labels.

Let’s talk about the deficit of professionals who understand the different ways autism can present in anyone who isn’t a young white boy (which is who the diagnostic criteria was written for), and who are skilled at and specialize in recognizing autism in these folks, especially Black, Indigenous, and brown folks, and women.

Let’s talk about the deficit of autistic folks who know they’re autistic because of the deficit of professionals who understand the different ways autism can present in anyone who isn’t a young white boy. There are so, so many autistics out there who don’t know they’re autistic for exactly this reason, and who are suffering—and I do mean SUFFERING—because of it.

Let’s talk about the deficit of providers who understand that autism is not a pathology, or a mental illness. That it can’t—and shouldn’t—be “treated” or “fixed” or “cured.” That there is no type of therapy for autism.

Let’s talk about the deficit of providers who understand that many traditional approaches to therapy don’t work well for autistics, and can actually harm and further traumatize autistic folks, and who specialize in—or are even experienced in—tailoring traditional mental health services to autistics who seek out mental health care for conditions or concerns that co-occur alongside their autism.

(To be clear: I’m not advocating for “treating” or “fixing” or “curing” autism through therapy or any other means. I’m advocating for autism-aware and autism-friendly mental health professionals—and, ultimately, mental health professionals who are themselves autistic—who can tailor mental health tools and therapies to autistics who also live with mental health conditions or other challenges for which we may seek mental health care (or at least, for which we might seek mental health care if we had a system that we could trust and that empowered and accommodated us).)

Let’s talk about the deficits in our healthcare system and the barriers to accessing care that autistic people face. Trying to find an autistic-aware, or even an autistic-friendly, healthcare provider is An Experience—one with significant potential to cause us real harm.

Let’s talk about the deficit of money dedicated to research focused on areas that #ActuallyAutistic people have spent years begging to be funded: supports and services. In both 2017 and 2018, the most recent years for which data is available, funding for supports-related research received only 6 percent of total funding and accounted for only 8 percent of total projects. By contrast, areas of research that the autistic community keeps begging to not be researched/funded—eugenics-y prevention- and cure-based research—received 73% and 72% of funding in 2017 and 2018, respectively. More from HHS’s Interagency Autism Coordinating Committee’s 2017-2018 report.

Let’s talk about the deficit of employed autistics, an issue that is largely driven by the public’s inaccurate understanding of autism and unwillingness to accommodate autistic folks in the workplace and in educational settings, and how the deficit of employed autistics intersects with the deficits we face in accessing medical and mental health care and education, and our overall wellbeing and quality of life. Education is highly valued in our society, and employment is essentially required to survive. As a rule, school and workplace environments are inherently inhospitable and inaccessible to autistic folks.

Let’s talk about the deficit of living autistic people. A lot of us don’t make it to 40 years old. On average, we die about 40 years earlier than our non-autistic peers. Suicide rates in our community are “extraordinarily high“—we’re six times more likely to attempt suicide, and up to seven times more likely to die by suicide, than non-autistics. And too many of us are murdered by our families, who see us a burdens. (Google “autistic killed by family”. You will not be in short supply of search results.)

Let’s talk about the deficit in the research re: adult representation. So little of the research is conducted with autistic adults, and that is failing and harming us in real ways.

Let’s talk about the deficit in resources and support available to autistic adults, especially older adults, because the research has failed to consider or include us and our experiences, perspectives, and needs.

Let’s talk about the deficit of social and familial support many autistics experience due to stereotype and stigma, and the trauma and abuse perpetrated against us by those who we count on to care for us. (See also the mention of filicide three paragraphs above.)

Let’s talk about the deficit of positive and accurate representations of autism and autistic people in media. Too often we see only stereotyped autistic characters, like Dustin Hoffman’s character in Rain Man and Sheldon from The Big Bang Theory. Thank fuck for Tyler James Williams‘s character, Gregory, in Abbott Elementary, which offers a positive and accurate representation of a Black autistic adult. And thank fuck for Chole Hayden‘s character, Quinni, in Heartbreak High, which offers a positive and accurate representation of an autistic teen girl. (Fun fact, the actor who plays Quinni is #ActuallyAutistic, which is why her on-screen representation through Quinni feels so real.)

Let’s talk about the deficit of visible autistic joy, and how framing autism and autistic people strictly or primarily through a negative, deficit-based, pathologized lens sets everyone up for failure. How this leads to imposter syndrome and guilt in autistics who aren’t in crisis or distress. How this leads to allistics disbelieving and dismissing autistics who who don’t match the “in crisis/distress” stereotype. How this leads to the withholding of support and accommodations. How this leads to harm.

If you want to talk about the “deficits” of autism, which a lot of y’all allistic people seem to want to do, talk about these things. These are the actual deficits of autism. These are the things that we autistics need y’all non-autistics to be concerned with fixing. Not us. We don’t need to be fixed. We need y’all to fix your understanding of autism and autistic people, and they way you treat and support and accommodate us.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s