I can talk about this now because the threat is temporarily abated. I couldn’t talk about it before because the implications were both personal and professional.
Last year, after I showed my video for the first time, a man representing a physics lab in Idaho approached me to speak to his organization. He was really excited. So I gave him access and let him show it to the decision makers at this lab.
After what seemed like an unnecessary amount of courting, he came back to me and said the lab passed because they wanted a more “scientific” take on autism. They’d be making their own in-house video. He also asked me if I’d been “officially” diagnosed.
The conversation sat wrong with me, so I emailed him the next day:
I took some time to think about your question yesterday about official diagnosis. I want to give you some more information because I think the issue deserves some thought if you will be touching on the issue through your organization.
I don’t focus on my official diagnosis because it’s a huge problem in the autistic community. There aren’t nearly enough diagnosticians who understand autism in women. Not in the U.S. or in anywhere around the world really. Most women come to their diagnosis through self-discovery or when one of their children is diagnosed.
It’s very expensive to pursue an official diagnosis. For a group that is so vastly chronically underemployed, $2000 is a lot to spend to get a stamp of approval that only confirms what you already know. If you look at any autism support group on Facebook, you’ll see the agony these women are in. It’s heart breaking. We know who we are. It’s part of the autistic sensibility. No one goes looking for an autistic label for sympathy or a false identity. There is no reward attached to this label.
Science is not the end. It is discovery by means of observation and repeated testing proving universal truths. How many things have been done under the banner of science that have hurt women, damaged them, diminished them and dismissed them? Currently we are underrepresented in all facets of medical knowledge. And the things we know to be intrinsically true are rejected out of hand because the existing science out there doesn’t support it. At least not yet. Waiting for science to catch up is the cruelest thing we can be asked to do.
Being a writer, I know the limits to words. Scientists should know the limits to science. As an advocate for autism, I have to tell you how very hurtful it is to be asked whether I was officially diagnosed because it is the jugular that people (mostly men) go for to exclude women from the community and the conversation.
Thanks. If you have any further questions, please don’t hesitate to ask. These are important questions that deserve considered answers.
This man came back months later with a new proposition for a disability talk. I’d be a panelist on a virtual talk, along with two execs from major international corporations. It made zero sense for me to be sharing air space with these men. But, I am always up for a challenge. The lab scheduled a conference call to discuss the opportunity with me.
The call started out very complimentary. And then they asked me what I would say to a hypothetical question. I answered frankly about the need to support autistic children and adults in a world not suited to them.
The woman in charge of the call said that my comments could be construed as implying Americans were unkind. They would need to pre-screen all my answers to make sure nothing I said would offend their mostly white, cisgendered male audience.
I took a breath, kindly thanked them for the opportunity and then declined the invitation, saying it was not for me. They seemed a little stunned.
The original guy called me up and said I did the right thing. That everyone on the call was in fact stunned.
I knew what was going on. Trump had just announced that he would pull funding for any federally-funded organization that provided diversity training that was “anti-American.” This lab was scared of getting their funding pulled.
I never said anything remotely anti-American. I talked about kindness and compassion. Well, maybe that is anti-American if you think about it. But the fact that this lab would have censored me or even intimated that what I’d said was wrong really pissed me off.
They were cowards. Plain and simple. This country has already been through enough witch hunts. I sent them a final email:
After today’s conversation, I’m going to have to demand that the INL and any of its employees and affiliates cease and desist from accessing venerandajade.com, further screening the video that was shared with you in good faith, or disseminating any information gathered from venerandajade.com.
It is with some well-measured consideration that I am justified in being extremely uncomfortable with any insinuation that I or any part of my message of kindness and compassion be construed in any way as un-American or derogatory of Americans or my country. I do not have to justify my patriotism to anyone. While you may not understand the implications of what transpired during our phone conference today, there is a well-documented and quite ugly history of denouncing people that leads to ruined careers, ruined lives and worse.
I am hereby demanding that you delete any copies of the video you may have and promise in writing not to circulate the video any further. Failure to comply with these demands may expose INL to claims of defamation and tortious interference among other causes resulting in monetary damages and injunctive relief.
I expect your response shortly.
I wasn’t fucking around. If they were only motivated by money, I would happily motivate them a little. They’d wasted my time, said patently ignorant things about autism, and tried to censor me.
I can’t imagine how many people felt threatened by Trump’s executive order. But if it reached all the way to me, a person with zero government affiliation, then is must have touched thousands if not hundreds of thousands.
I could have capitulated and been involved on a very big talk for big time dollars. But that wouldn’t have been me. And, knowing myself, I would have probably gone off script and said how I felt anyway. I’m not a jerk. I just don’t respond well to authoritarianism. No one should.
Well, unless I’m the authority. But at least I’d make it fun.
So yeah, that was a thing that happened.