Monday, April 29, 2019

The Importance and Power of Autistic Self Diagnosis

White person with blue eyes and a Freddie Krueger sweater taking a selfie in a mirror,  except a smaller circular mirror is inverting their face where their head would usually be.
Image © Stig Andersen | Flickr / Creative Commons
[image: White person with blue eyes and a Freddie Krueger sweater taking a selfie in a mirror,
except a smaller circular mirror is inverting their face where their head would usually be.]

Solveig Standal

We autistics need to have a serious talk about autism and self-diagnosis: what self-diagnosis means, and what effects it will have on us when inevitably both autistic and non-autistic people attempt to gatekeep our own autistic identities.

Ultimately, we know that it’s not autistic people who dictate who we allegedly are and what is allegedly best for us. Neurotypicals continue to dominate the conversation and speak over autistic voices, which ultimately reinforces a pathologizing viewpoint about us, and centers around the idea that somehow we fundamentally cannot speak for ourselves, purely because of our neurology.

The medical community continues to ignore people who do not fit the white cisgender male stereotype of autism—something that more closely resembles the cultural images of Rain Man or Sheldon Cooper. The medical community, as well as charities run on our behalf by non-disabled people, frequently overlook autistic girls and people of color. In the United States, the CDC does not even publish prevalence rates of autism in adults. Effectively, this means that the needs of most autistic people continue to be ignored, and the accommodations that are provided have a tendency to drop off as we reach adulthood.

We know what it’s like to see autism charities run by neurotypicals, whose primary focus is to paint a picture where we are the burdens that they must endure. At best, we are inspiration fodder intended to make neurotypicals feel better about themselves. At worst, we are portrayed as the driving wedge that ruins otherwise-healthy marriages. We are portrayed as highly disruptive, problematic, unteachable. We are portrayed as literal puppets, and given no autonomy whatsoever.

We know what it’s like to have our needs constantly ignored by the people who are supposed to be supporting us. Personally, I have sat in countless meetings centered around my disability accommodations in public school, where teachers and counselors discussed my situation as if I were not even in the room. Where so many people were very eager to tell me who I was, and what I needed, and how I felt, and where they all seemed to insist that they knew me better than I could possibly ever know myself. And as hard as things were for me, I know I would have been abused even worse if I were not white. Racism and police brutality is an inextricably critical part of understanding the dynamics of abuse we face every day.

I grew up in the 1980s in a very rural setting, and our access to information about autism was extremely limited. One of my earliest memories was a television news special about autism, where they asked questions about whether or not we were really people inside, or just walking automatons. At a later date, my parents were interviewed about me. I very distinctly remember the news channel interviewer describing the "emptiness" in my eyes, as if there was nobody inside of me. As if I were not a real person.

This was also during a time where Bruno Bettelheim and Andrew Wakefield’s beliefs were so widespread; they argued that autism was caused by vaccines, or by cold and unloving mothers. Self-proclaimed autism professionals preyed on parents of autistic children, demanding them to go to extreme measures in false hopes that they could cure us of our autism. They also pressured parents into therapies that were designed to make us look less autistic, probiotic diets, gluten-free diets, and more. One doctor, after spending less than five minutes with me, suggested that I should immediately be institutionalized. Finally, seeing no other options, my parents contacted the only autistic self advocate they knew of—Dr. Temple Grandin.

Dr. Grandin wrote back and explained autism to my parents in a way that only an autistic person could. She explained to them how I was not broken, I didn't need to be fixed, and I didn't need a cure. Ultimately, the best thing for them to do for me was to learn to accept me for exactly who I am, and focus on improving quality of life as best they could. And because of her lived experience as an autistic woman, she was able to impart better knowledge to us than all the other medical professionals put together. It was this step—connecting with another autistic person who had first-hand experience of what being autistic was like—that resulted in a bigger, much more profound improvement in my life than years spent with neurotypical professionals.

Many years later, as an adult, I came to realize that I needed to be able to emotionally process everything that happened to me. I needed to find a better understanding for myself in terms of what it means to be autistic, based on my own experiences—not based on what the "experts" see from the outside. I knew the only way to do this was to find other autistic voices to compare notes with. It started out by finding books written by autistic authors like Loud Hands, finding the Autistic Self Advocacy Network, and eventually making my way onto online autistic communities through Twitter.

I have found solace and comfort within our autistic community. I found other autistic people with common experiences and understanding of what it really means to be autistic… and I found people with substantially different experiences and understandings, too. I found a place where my interests aren’t looked down on.

This is a place where autism isn’t described in clinical terms with symptoms and conditions and treatment plans and other pathologizing things. Instead, we are a community of self-advocates who are fighting hard to claim our place as the real experts of what it means to be autistic. As the real experts of autism, we are in a better position to help others recognize their own autistic identities, and we’re in a better position to support them as they figure out what that means to them. In doing this, we are shifting away from a pathologizing clinical narrative that describes us as broken, and moving towards one that allows us to celebrate who we are and recognize our own strengths and our own needs.

Self diagnosis, at its core, is all about recognizing our own neurodivergence and reclaiming our role as the experts in our own lives. Understandably, there are limitations to what we can do with a self diagnosis. We cannot write our own prescriptions for medication, and we would not qualify for the kind of public assistance that requires a formal diagnosis. Self diagnosis does, however, give us better access to that autistic community support I was talking about earlier. It strengthens our network with other people who have shared experiences with us. Self-diagnosed people can access tips on what to expect from those of us who have gone through the formal process, weigh the costs and benefits of a formal diagnosis, and decide whether or not to pursue one in the first place.

Despite all this, there is a movement to restrict autistic community to those who receive a formal diagnosis, and this becomes a problem for a number of different reasons. First, so many of us don’t even know to pursue a formal diagnosis until we recognize in ourselves that we might be autistic, or others start to point things out to us. The process of self-discovery then takes time, and it only stands to benefit when people around us believe that we probably are actually autistic.

Yes, ultimately some of us will come to realize that they are not really autistic, but the exploration still helps them find answers about themselves, and no one is harmed in the process. However, when we deny someone’s autistic identity, we shut them out of the whole process, deny them access to the tools they need to better access the health care system, and potentially deny them their formal diagnosis altogether.

When we deny the validity of self diagnosis, we fail to recognize how broken health care systems can be. We effectively restrict our support to those privileged to afford a formal diagnosis. We ignore the fact that doctors notoriously ignore the needs of patients who aren’t white cisgender males. We pretend that autistic people of color are seen as potential threats who are sent into the juvenile justice system, and not seen as neurodivergent students with accommodation needs that are being unfulfilled. And worst of all, when autistic people find themselves neglected, ignored, and belittled by the very professionals who are supposed to be supporting them, they are neglected, ignored, and belittled by their neurosiblings as well. This cannot be allowed to happen.

As we continue to claim our rightful place in leading conversations and crafting policies about autism, we need to remember that self diagnosis is one of our strongest assets. We need to remember our own process of self-discovery and everything that we struggled with along the way. We need to ensure that future generations of autistic people do not have to suffer through the things we suffered through, because it’s the right thing to do.