Autistics Speaking Day: speaking from the shadows
This is my post for Autistics Speaking Day, being hosted here this year. I don’t know if they will include my post this year or not but I am putting it here anyway. Some historical background on Autistics Speaking Day is here. My post from last year is here.
I was debating whether or not I should say anything for Autistics Speaking Day this year, because most of the time, I’m not speaking out as an openly autistic person. A few people know at work and in the community, but in most cases when I speak about autism at work or at community events, I do it without disclosure. And so I wonder if I’m a legitimately speaking autistic in the spirit of Autistics Speaking Day.
But I’ve decided to speak out. And specifically, I’m going to speak about the three reasons I’m not openly autistic at work and in my community, things I’m afraid would happen if I were. Things I have legitimate reason to fear, based on current available evidence. My fears are that I would be disbelieved, professionally discredited or tokenized.
1) Disbelief
Beliefs about autism and the lack of competence of autistics are so ingrained that people who know me professionally as a reasonably competent person may not believe my diagnosis.
I wish I didn’t think this was a likely outcome, but I really think it is.
People make flippant comments about how “soon everyone will have an autism diagnosis” and I wonder, would they believe mine?
People conjecture about the ability of autistics to understand humor or have genuine friendships and I wonder, if they think I can tell a joke or be a friend, would they believe I’m autistic?
People jump to issues such as guardianship or sheltered workshops as things relevant to autism, and I wonder if they could ever believe that a practicing physician could be on the same spectrum. If they did potentially believe I was on the same spectrum, they would likely say I was basically so far at the other end as to not have anything relevant to say on the subject of “real autism.”
2) Discrediting
Beliefs about autism and the lack of competence of autistics are so ingrained that people who know I’m autistic may then use that as reason to discount me professionally.
I wish I didn’t think this was a likely outcome, but I really think it is.
People make comments about impaired theory of mind, and I wonder if they would then think I can’t have any empathy or understand other people’s perspectives. They may then believe I can’t say anything relevant or useful about the treatment plan for a particular autistic child.
People make comments about the ability of autistics to have genuine friendships and I wonder if they would then not believe I was able to be a friend, or even discredit anything I have previously said about my friendships.
3) Tokenization
Beliefs about autism and the lack of competence of autistics are so ingrained that people who believe I’m autistic may then try to use me as a token autistic rather than meaningfully engaging with multiple autistics as whole people.
I wish I didn’t think this was a likely outcome, but I really think it is.
There’s the danger of being labeled as a “so high functioning” outlier, and I could be asked to speak at conferences as an autistic without the organizers having to recognize that there are multiple autistic people in the community who could also speak or serve as board members.
There’s also the danger of being asked to be a self-narrating zoo exhibit and to be asked to explain autism from the inside, losing the chance of getting autistic community messages of access and civil rights and acceptance out there.
And yes, I realize that some of these worries are in direct opposition to each other, so that if one happens, the other cannot happen. For example, I can’t be discredited if I’m not believed. Although I could be discredited in a different way if I am not believed, because then I would be considered someone who “thinks she’s autistic,” which doesn’t do well for one’s credibility in a professional field. But more, some of these worries are different depending on the situation. I suspect some specific colleagues wouldn’t believe me, I suspect potential employers would summarily discredit any openly autistic job-seeker, and I know several in the local parent organization who would pounce on me as a potential token in a heartbeat.
And so I continue to hide in plain sight, an autistic working in a field of self-described autism experts and engaging in autism community events that are largely parent/professional driven. I have mixed feelings. I think about being openly autistic. Then I hear some of the things people say, and I realize I can’t. Then I worry I’m being part of the problem so long as I don’t disclose. Then I worry about my credibility if my patient’s parents learn their child’s doctor is autistic, and my ability to get future employment in the field. The worry and anxiety autistic cognitive loop can get impressive.
I’ve settled on a compromise of sorts, a cognitive truce with my own brain and reality and my perceptions of my reality. I am openly disabled, and I speak about autism issues from the perspective of pan-disability advocacy. I am openly involved with the autistic community, and try to amplify and center autistic voices and perspectives when I speak up. I quote autistic people or advocacy groups whenever possible. I let people think I’m a disabled ally. I exploit passing privilege a little. I push for meaningful inclusion of autistic adults at community conversations about autism. I push against the commonly held beliefs about autism and the lack of competence of autistics whenever I can safely do so at work and the community.
Right now, I think I can do more for autistics at work and in the community if I don’t bring myself into it and have to wade through layers of disbelief, discreditation and tokenization. I can spread the message more without it being made all about the messenger.
I work to make my community and field a place where, someday, I feel I can be openly autistic.
I am speaking as much as I safely can, I am trying to open up opportunites for others to speak, and I am trying to make my environment a safer place for me to speak myself.
I don’t know if this will count towards the official Autistics Speaking Day or not, but I’m speaking here, now. And hoping for a future where I don’t have to be afraid to speak, anywhere, or a future where I don’t have to speak, at all.
I was debating whether or not I should say anything for Autistics Speaking Day this year, because most of the time, I’m not speaking out as an openly autistic person. A few people know at work and in the community, but in most cases when I speak about autism at work or at community events, I do it without disclosure. And so I wonder if I’m a legitimately speaking autistic in the spirit of Autistics Speaking Day.
But I’ve decided to speak out. And specifically, I’m going to speak about the three reasons I’m not openly autistic at work and in my community, things I’m afraid would happen if I were. Things I have legitimate reason to fear, based on current available evidence. My fears are that I would be disbelieved, professionally discredited or tokenized.
1) Disbelief
Beliefs about autism and the lack of competence of autistics are so ingrained that people who know me professionally as a reasonably competent person may not believe my diagnosis.
I wish I didn’t think this was a likely outcome, but I really think it is.
People make flippant comments about how “soon everyone will have an autism diagnosis” and I wonder, would they believe mine?
People conjecture about the ability of autistics to understand humor or have genuine friendships and I wonder, if they think I can tell a joke or be a friend, would they believe I’m autistic?
People jump to issues such as guardianship or sheltered workshops as things relevant to autism, and I wonder if they could ever believe that a practicing physician could be on the same spectrum. If they did potentially believe I was on the same spectrum, they would likely say I was basically so far at the other end as to not have anything relevant to say on the subject of “real autism.”
2) Discrediting
Beliefs about autism and the lack of competence of autistics are so ingrained that people who know I’m autistic may then use that as reason to discount me professionally.
I wish I didn’t think this was a likely outcome, but I really think it is.
People make comments about impaired theory of mind, and I wonder if they would then think I can’t have any empathy or understand other people’s perspectives. They may then believe I can’t say anything relevant or useful about the treatment plan for a particular autistic child.
People make comments about the ability of autistics to have genuine friendships and I wonder if they would then not believe I was able to be a friend, or even discredit anything I have previously said about my friendships.
3) Tokenization
Beliefs about autism and the lack of competence of autistics are so ingrained that people who believe I’m autistic may then try to use me as a token autistic rather than meaningfully engaging with multiple autistics as whole people.
I wish I didn’t think this was a likely outcome, but I really think it is.
There’s the danger of being labeled as a “so high functioning” outlier, and I could be asked to speak at conferences as an autistic without the organizers having to recognize that there are multiple autistic people in the community who could also speak or serve as board members.
There’s also the danger of being asked to be a self-narrating zoo exhibit and to be asked to explain autism from the inside, losing the chance of getting autistic community messages of access and civil rights and acceptance out there.
And yes, I realize that some of these worries are in direct opposition to each other, so that if one happens, the other cannot happen. For example, I can’t be discredited if I’m not believed. Although I could be discredited in a different way if I am not believed, because then I would be considered someone who “thinks she’s autistic,” which doesn’t do well for one’s credibility in a professional field. But more, some of these worries are different depending on the situation. I suspect some specific colleagues wouldn’t believe me, I suspect potential employers would summarily discredit any openly autistic job-seeker, and I know several in the local parent organization who would pounce on me as a potential token in a heartbeat.
And so I continue to hide in plain sight, an autistic working in a field of self-described autism experts and engaging in autism community events that are largely parent/professional driven. I have mixed feelings. I think about being openly autistic. Then I hear some of the things people say, and I realize I can’t. Then I worry I’m being part of the problem so long as I don’t disclose. Then I worry about my credibility if my patient’s parents learn their child’s doctor is autistic, and my ability to get future employment in the field. The worry and anxiety autistic cognitive loop can get impressive.
I’ve settled on a compromise of sorts, a cognitive truce with my own brain and reality and my perceptions of my reality. I am openly disabled, and I speak about autism issues from the perspective of pan-disability advocacy. I am openly involved with the autistic community, and try to amplify and center autistic voices and perspectives when I speak up. I quote autistic people or advocacy groups whenever possible. I let people think I’m a disabled ally. I exploit passing privilege a little. I push for meaningful inclusion of autistic adults at community conversations about autism. I push against the commonly held beliefs about autism and the lack of competence of autistics whenever I can safely do so at work and the community.
Right now, I think I can do more for autistics at work and in the community if I don’t bring myself into it and have to wade through layers of disbelief, discreditation and tokenization. I can spread the message more without it being made all about the messenger.
I work to make my community and field a place where, someday, I feel I can be openly autistic.
I am speaking as much as I safely can, I am trying to open up opportunites for others to speak, and I am trying to make my environment a safer place for me to speak myself.
I don’t know if this will count towards the official Autistics Speaking Day or not, but I’m speaking here, now. And hoping for a future where I don’t have to be afraid to speak, anywhere, or a future where I don’t have to speak, at all.