My attempts to blaze a trail for neurodiversity rights in America largely consists of me awkwardly introducing myself to key people, online and in person, who might prove to be valuable allies. I tell them my backstory and then present my neurodiversity-positive perspective to them. If they see the light, they see it; if they don’t they are just awful to me.
At the college I graduated from (finally, with no accommodations whatsoever), a new class is being taught by two women, a psychologist educator and a clinician, on autistic psychology. I contacted them to have a sit-down to see if they were on the same page as me and therefore willing to be resources and allies.
It didn’t go quite like I’d hoped.
I introduced myself as an autistic rights advocate. The Educator was friendly and welcoming, if a bit maternalistic, and perhaps this is because she has an autistic son. However, she invited her teaching partner for the class, the Clinician, to sit in on our conversation. I’m not as good at speaking with more than one person to keep track of, but what I have to say is important so I agreed. After going along in my spiel for a while, the Clinician interrupted me as I was finishing up the grittiest part of my tale, and in a voice dripping with condescension, preceded to ask me, like I was a dumb neophyte, what I thought I was really going to do to advocate for autistic people.
In fact, her tone was so acid, I had difficultly understanding for a moment what she was getting at. What she was “getting at” was confirming the power imbalance between us by trying to insult my efforts and enthusiasm. I admit, I had criticisms of how her profession has harmed people like me and how clinicians frequently don’t listen to women who come to them with a suspected autism diagnosis. I spoke of how clinicians are prone to over-pathologizing people with neurological differences rather than working with us to figure out how to navigate our cognitive profile and cultural variance.
If you are a professional who balks at this, I think you are the one who has developmental difficulties. An important aspect of growing as a professional is being willing to heartily consider the perspectives of the very people you purport to study and help. Clinicians, researchers, nonprofits, and parent organizations have been belittling, nay fighting, the ideas and concerns of autistic adults for quite some time – intellectual disability or not.
In addition, I’ve spent the last couple of decades living as a person people took to be a normally developed adult woman. Now that I disclose my diagnosis to certain folks, I am amazed at how differently I am addressed and spoken to. Some people take on a parental tone and some speak to me as if I have an intellectual disability. Some are sarcastic or pandering, not understanding that I can easily pick up on this, but not react to it immediately. In truth, I’ve been independently navigating the adult world with no accommodations or mercy for over 25 years and I think out my actions and projects to an insanely meticulous degree.
[Note: Please speak to all developmentally disabled adults, whether their intellectual abilities are compromised or not, as if they are adults you respect and value. Always. Even when we say things that might seem uncouth or too blunt. Doing otherwise is ableist. If we screw up and insult you, a simple “Hey, I didn’t like this thing you said because it implied this and made me feel thus” is perfectly adequate. We value this kind of feedback because being able to get along with others is important to our survival, assimilation, and self-advocacy.]
However, when it comes to speaking the truth about the urgent issues that autistic people face in America, especially in the deep South, I’m not going to sugar-coat our perspective and its validity. Sorry if it makes you uncomfortable, but people like me are accustomed to being uncomfortable all the time. Welcome to our world.
Sadly, these condescenders are the same folks who ought to be the ones advocating for our perspective. Ableism runs deep, however, especially in the medical profession. When the patient is cognitively or socially different, the patient is always wrong, mistaken, or misperceiving the situation. There are many phrases and euphemisms to express to someone that you don’t value or believe them, and maybe even think they’re crazy and misguided.
What gives me confidence in my perspective is the chorus of voices I have encountered since taking up this cause for myself and others like me. Women in the autistic community write beautifully about their experiences, both internal and external. We have a style that transmits clarity, grace, and a heaping helping of blunt-force truth. We are consummate communicators, given the right method, and this is one of the major differences between autistic males and females. [Interestingly, the two women didn’t even directly cover gender differences in an entire semester.]
We know how to spell shit out for normals is what I’m saying.
Problem is, no one is deigning to listen. No one is seeking us out for our opinions. No one is giving us any funding, marketing, or nonprofit money to further our cause. We all know now that women and minorities have a hard time getting people to believe what they experience. Imagine how having a stigmatized brain condition and being female complicates this. Add on not being white and/or being queer and you can understand why our suicide rate is shockingly high.
After explaining to the Clinician the various direct actions and programs we need in our community to mitigate our suffering and how I’ve been avidly building a network and platform for three years, I hope her misgivings were assuaged. But, boy, it left a bad taste in my mouth. I hope they heed my words and give my ideas a bit more study . . .
One mean-ass old white woman down; a bazillion to go.