My autism imposter syndrome self-pep talk

Whenever I doubt whether I’m autistic (classic autistic move, Btdubs), I remember one of my diagnostic sessions back in 2011.

But first, I want to point out that autism as a diagnosis came at me in such a spooky way. Some of you know this story and some of you don’t, so I apologize if this is not news to you.

There I was, miserable at 31 and unable to understand why I didn’t fit in and why nothing that was supposed to make me feel fulfilled ever did, crying on the couch in Tucson I was glued to and watching “It Gets Better” videos all night.

And then I just happened upon a Bollywood movie about autism. Seriously…signs come in very strange ways. By the end of the movie, I had already begun a Google search about autism in women. There was hardly anything back then. And what did exist was scary and filled with doom. I was reeling from the realization and the bad news. I managed to find one e-book and download it.

By the end of that night I’d read Aspergirls by Rudy Simone. And I was convinced that she was describing me. But how to know? How to figure out if I was just looking for a convenient excuse or being a hypochondriac? For five years I’d been failing at living with bipolar disorder…taking every drug under the sun and getting no relief. I’d lost all credibility and any hopes of ever working as a lawyer. I had no identity except FAILURE in big red blinking caps, even though I had accomplished a whole lot.

I needed a diagnosis. But I had no idea how to get one.

The book mentioned a single diagnostician who worked with adult women. One. Barbara Nichols. I googled her hoping I might find additional resources on diagnosis. Instead I found her LinkedIn profile. Of all the places on God’s green earth for her to exist, it happened to be in Tucson.

I was right to think no one would believe me without a diagnosis. Not my doctors. Not my husband or my family. What most people currently know about autism could fit in a thimble. Imagine what it was like 11 years ago. I didn’t even think I really had it. I was hoping, honesty, to rule it out. Autism wasn’t something I wanted to have.

The session that reminds me that I am truly autistic involved linguistic tests asking me to explain idioms and jokes. It also involved flash cards with just the upper halves of faces drawn on them. I had to guess the emotion associated with the facial expression.

I FAILED. Hard. Like clear cut failure. Like “can you see the number in these dots” colorblind test failure. I took it hard. I felt ashamed.

You see, when you’ve been living a lie for 31 years, you get pretty good at faking things you’re bad at. You’re never good enough to pass all the time. Just good enough that you can recover when you flop. It comes from decades of embarassing yourself. Embarrassment is people laughing at you, talking behind your back, asking you why you’re so dumb or lazy or thoughtless. You don’t know why you’re so bad at all these things and how everyone else seems to know them and be good at them. You just feel certain that something is wrong with you and you have two choices: fake it fake it fake it or go live in a cave in Serbia with goats for the rest of your life.

Societal pressures on women have us choosing the former anyway, so I didn’t know what was real. Does everyone get this but me or are we all as miserable as I am and I’m just worse at hiding it?

The answer was neither. The answer was that I am autistic. I am different. I’m always going to perceive the world in a different way. Sometimes these perceptions will overlap with neurotypical people and sometimes they won’t. Sometimes the way I perceive the world makes me feel lonely the way it used to when I didn’t have a word for what I am. Sometimes it makes me laugh and it makes you laugh, too, because no one has pointed out how weird things are that we take for granted.

When you’re autistic, you want other people to understand. You have to play this fine line in saying, “Here’s a thing I do because autism. It’s probably something you might have some familiarity with. That doesn’t make you autistic. It doesn’t make everybody autistic. And it can’t be reduced to ‘everyone does this so you’re not autistic either, Vene.’”

I have to help people understand in ways they can connect to while also helping them understand that autism is not just a list of symptoms like some cafeteria menu. It is a profound difference regardless of how I appear on the outside. Give me the benefit of the doubt, not because a diagnostician gave me the autistic seal of approval, but because I have no reason to make this up.

If the things I said were lies, I’d have a novel on the New York Times bestseller list and I’d be spending Christmasses at Oprah’s Santa Barbara compound. I’d be flush with cash.

But I don’t. Partly because I’m autistic. Partly because I’m an altruist and my main motivation in life is to help. It doesn’t make me a good person. I struggle with being good most days. I struggle with kindness vs. truth.

I struggle with reality. I have a diagnosis and I still wonder if I’m making the whole autism thing up 11 years into it. It eats up emotional energy. I don’t know if that ever goes away because there aren’t exactly a lot of previous generations of autistic women to guide the way. They’ve always existed. But they didn’t live in the “autism” paradigm. I’m on the forefront of this in many ways. It’s the great unknown. And it can be scary sometimes.

But it’s also liberating to know that I can make my own rules and live by my own code and never feel beholden to a neurotypical society. I can keep pushing the envelope. And doing so benefits a lot more people than just me.

Next time

Precocious kids are lonely kids. We try saying the things we feel to see if anyone else feels them and we get weird looks and silence. We bottle it up and try to play along and wonder why everything that was ever meant to be satisfying just isn’t.

We’re wrestling with a lot and (unless we’re really lucky) there usually isn’t anyone to share this stuff with.

So when you meet someone who gets it…any of it…and you both put down the masks you wear to protect this vulnerable side of you that no one ever seemed to understand before…a lot of feelings come forward. You can get greedy for this. You can even resent the person who gets it and then pulls back. Becuase you don’t want to have to go back into that pretend world all by yourself.

I think in these weird dimensions of time. They’re all happening at once. The present isn’t usually overwhelming unless I’m sick or lonely or grieving. Then the present can feel oppressive.

I got lucky enough to find a therapist who got it. I found a life coach who helped empower me to own myself and feel less afraid to inhabit what that was.

After that I found a handful of people who were autodidacts, iconoclasts, polymaths who got it. I can get needy around these people. I think that’s understandable. I don’t want to be the loneliest whale who communicates at a different frequency (I think that whale found a buddy). But it doesn’t have to be my whole reality. I can recognize my neediness, give it space, and not let it turn into resentment.

In the future, when I come across the next one…and there will be a next one…I think it would serve us both well for me to understand that they are just as limited as I am. And we are all broken in unique ways.

I could tell you things about my current self that are coming up in negative ways. I’ve been leaning into vanity and outside affirmation because I’m not in touch with my authentic self all the time. Sometimes I am and sometimes I forget and I go I to automatic behaviors. I’m not going to beat myself up about it.

I need to be aware of tendencies that I have to fix people. It’s not my job.

I need to be aware of intuition that requires contemplation. When I think something’s off, it usually is. But I jump to conclusions about what exactly that is when I might not have all the information yet. I need to slow that process down.

I need to be aware of having to be right. Having to be perfect. Having to dominate.

I need to stop being mean to people just because I find them insufferable. I need to stop proclaiming from the rooftops how insufferable they are. It doesn’t matter that it’s true. It doesn’t serve a purpose.

What is it I want to do with all the remaining time I have in this life? I want to cook great food. I want to catch buses for old ladies trying to make a connection. I want to laugh at silly things. I want to discover truth in unlikely places. I want to be kissed by someone who gets it and just appreciate it without needing more.

I don’t look talk like I’m from around here

So part of the journey of self-exploration has been in getting to witness the autistic diaspora.

When autism is discussed in a vacuum, rarely does ethnicity come into play. Like most things, autism is discussed from a white place. A male place. A privileged place. A parental place. A neurotypical place.

But the great thing about social media is that communities can rise up and speak directly to one another and amongst themselves that would not have been possible but for the Internet. We can compile experiences to build a sense of what really goes on in situ rather than from a clinician’s viewpoint or diagnostic criteria. It’s a democratic process that fills out the picture of what it is to be autistic.

I’ve learned so much about how we communicate differently than neurotypical people down to linguistic differences and humor. Also that non-verbal communication is just as, if not more, important to a group of people whose speech is disrupted by everything from auditory processing issues to missing social cues to neurotransmitter deficiencies and stress.

There are times when it physically hurts for me to have to say words out loud. My peak talking hours are 10 p.m. through 4 a.m. Outside of those hours I have to make a concerted effort. On days when I’m tired, I can force out words but there will be huge mistakes. My English starts to go. And while I am much much much less proficient in any other language, I speak in Spanish when I’m in pain, in French when I am anxious and, eventually, when I am physically exhausted, I just spell out words in American Sign Language that I taught myself from a Girl Scout handbook when I was eleven.

And then there is coded language. I’ve now heard a few Black women’s experiences about not feeling or sounding Black enough. It made so much sense to me because I got called out a lot as a kid for not talking like everyone around me. And, as an adult (I didn’t really interact with other ethnic minorities until college), I’ve been called out by people of color for acting “White.”

But here’s the thing: autistic people tend to have literal comprehension of language. They parse meaning differently. Slang is harder for autistics to incorporate. So, yeah, we talk like the Windows 95 manual reads because we say what we literally think and feel and slang works on different brain pathways.

Also, we don’t try to hide our meaning, so figurative flourishes lack importance. We’re not sugar coating anything. You can see this as a social deficit but for me, when I finally experienced directness, it felt incredibly freeing. If anything I can’t stand talking to passive aggressive people who hide the ball with their words and then grade you on how good you are at reading between the lines. It’s exhausting.

But these differences take their toll. I’m sure I wasn’t the most pleasant kid, but I straddled several different cultures as a kid (Mexican, Mexican-American, white American, and different classes within these groups that add furrher nuances) without the benefit of self-awareness that comes with an autism diagnosis. I was never going to master in-crowd talk with a single group let alone many or all of these groups. So I learned to observe and mask. Just go with the flow until the puzzle pieces came together enough that I could decode the communication and engage to a limited extent.

It meant always being an outsider. But it also meant that I built skills that allowed me to mutate to fit the needs of the situation. Stick me anywhere and I will float…eventually.

I got used to being an outsider in Nogales. I got used to going to Circle K or Food City and being asked “where I was from” when I have no other answer than Nogales and the people asking me clearly were not from Nogales. I got used to white teachers dismissing me because I had a Mexican name and then coming to the realization that I was the smartest kid in the class and that I couldn’t possibly be just another kid from Nogales.

That I have to have more compassionate for others’ ignorance and rejection when I’m supposed to be the one with social deficits is ironic and tiring. But then again, stick me and a typical person who fits “in” to their home environment in a completely foreign place and I’m going to integrate better. It’s why NYC is ultimately the best environment for me because it’s full of distinct cultures, strangers, people who are not from this place and people who have lived non-linear lives.

We’re all just weirdos trying to survive at this thing called life here. It’s the squares who find this place off-putting. And somehow, we manage to be kind to them because we know what it is to live in the absence of kindness.

What’s the frequency, Kenneth?

On Monday morning, Andrea and Mikey did something that happens to me with regular frequency.

I told them there was no way I could ever waitress. I wouldn’t be able to hear people or take orders or make eye contact. They dismissed it out of hand and said I’d probably be really good at it.

The problem is this: I don’t get taken at my word.

There are things I cannot do. And not because I don’t want to try. I worked in a bread store one day and the smell of the bread was so overwhelming, I couldn’t take orders. It took a week for me to get over the one day I worked.

Shift work is also not a good idea. I need routine because it takes too much effort to plan out weeks with irregular schedules. I will mess up.

But even in the bigger scheme of things, having an invisible intellectual disability means that people measure me with a neurotypical yard stick and I will never measure up. It will just look like I’m not trying. Or I’m being obstinate. Or deceitful. Or exaggerating. Or stubbornly stupid. Willfully ignorant.

And, maybe, if I just applied myself I could reach my potential.

But this is me trying. This is me swimming against a powerful tide that no one else can see. This is me succeeding. This is me thriving. I’m earning a gold medal in getting by and a badge of honor in righting wrongs. I’m imperceptibly influencing people in ways that will alter the course of their entire lives.

I’m a tectonic shift whose change will be registered in the very ground for future generations to behold.

You don’t get paid a salary for that. The reward is when you see that you have broken through to someone. When the stigma recedes. When they start living more authentically.

I am happy to be paid in karma. Just as long as I can keep a roof over my head.

Steady, as she goes

To contextualize what I’ve been battling these past few months, I guess you’d have to know how bad things can get. Neglect, illness, physical and mental deterioration, and suicide attempts.

I’m an adult autistic who wants to live independently. I’m walking on a high wire without a safety net. I do it well enough to make most people around me think I’m capable and just a little lazy and ditzy when really it takes all my faculties to operate at this level.

Having anemia and depression and autistic burnout on top of other physical health issues is enough for anyone to find overwhelming. I’ve had to advocate for myself over and over, sometimes pushing personal relationships. Sometimes just posting blood test results on Facebook and crowdsourcing for solutions.

I’ve been doing this on Medicaid. It’s been a full time job taking care of myself. Many times the examinations have been extremely painful even after the medical professionals claimed they wouldn’t be. I faced them alone. I came home alone. I had to feed myself, dress myself, shower, etc. That on top of memory loss, skill loss, financial strains, and trying to maintain friendships only made life harder.

But to the medical establishment my problems weren’t a big deal. They fundamentally don’t understand autism and how bad things can get. They don’t know what it takes to function at the level of neurotypicals.

I look normal. I speak well. I make eye contact. I’m intelligent. But that doesn’t mean I can take care of myself. I don’t know who could have helped. I don’t think the system has people to help people like me. But it should. There’s a huge gap in care.

During this time, I’ve gone without food, without medicine. I’ve burned myself. I’ve forgotten to take out tampons, diva cups. I’ve lost things. Dates have passed. I’ve broken down more times than I can count.

But I also gave a talk to Amazon. I cut Emily’s hair. I helped J through his legal issues. And Mikey with his dad’s eulogy. Taught people about autism and Covid. Taught myself about enough medical issues to be dangerous. Survived in NYC.

It’s amazing how much of me I lost in the past six months. It should be just as amazing that I came out the other end.

If what I’m learning could help others have more compassionate care and a kinder world, I’ll do whatever it takes to make that happen. Maybe that’s apparently what I’m here for this time around. That’s what gets me through when things get too hard and feel like just too much.

Because otherwise it’s just me on my bed alone, trying not to cry, wondering what the hell I’m going to do with the rest of my life. Intuitively it doesn’t feel like that’s the case.

The struggle, she is real

When I was still a little kid, some people in my family started showing signs of illness and my mother drove herself insane looking for answers. I worry about going off the edge the way that she did.

She started reading the Bible. Then keeping a prayer candle lit 24 hours a day, unattended. Then keeping the prayer channel on TV. Then prayer cloths in our pillow cases.

There were photocopied medical articles laying around, tabbed and highlighted. There were a lot of doctors’ visits and expert consultations. Precautionary measures constantly taken. The smell of Clorox disinfecting things.

Fear just hovered over the house. My mother checked me once over meticulously for signs of the syndrome. Afterwards I went to the bedroom I shared with my sisters and collapsed in bed, crying. I was 10 or 11 and terrified all the time. But there was no comfort. No hugging. No reassurance. Not even any mention of love. Just…fear.

I don’t know what was really going on because all I have are little kid memories and talking about it just brings up unprocessed trauma. All I know is that the threat of illness was always around.

And I always felt sick. I was a sickly kid. There were all these little things that would happen to me. Not textbook worthy. Just that I got sick and injured a lot and it was always a little bit out of the ordinary. I always had rashes and bruises and colds in the winter and weird pains I couldn’t describe. The question was never if I was ok. The response to me saying I felt sick was, “What now?”

I always felt like I had to prove how sick I was but I didn’t have the ability to describe what I felt. Just that I felt something wasn’t right. And it wasn’t just the stress of living in a very scary household. It was real. Like the time it took two weeks to get anyone to believe I had something in my eye and extract it. It was a microscopic sliver of wood from my bunk bed. When the opthamologist finally showed it to my mother, I wanted to frame the damn thing.

I came down with walking pneumonia the first day of Christmas break in sixth grade. My mother wouldn’t believe I was sick. It was the day of the Christmas parade and I begged my mom not to make me march with the band because I couldn’t keep up. I can’t remember if I did, only that we drove from downtown Nogales, where the parade was held, to my pediatrician’s office next to the hospital. It was a place I knew all too well.

He listened to my lungs and diagnosed me. My mom got me Long John Silver’s (a Nogales novelty at the time) while we waited for my prescription to get filled at Walgreens. I ate a bit at the dining room table. And then I went to bed and slept for the better part of a week. My mother told me she loved me while I was conscious sometime during that week. That I remember it, and she as well, tells you that it was a remarkable occurrence.

I’m conditioned to ignore what’s going on with my body. It’s all in my head. And I’m discredited, so I don’t even believe me.

Right now, I know something is wrong. Not wrong enough to land me in the hospital. Not a burst balloon that captures everyone’s attention. More like a slow leak.

Part of me has been ignoring it. Part of me has been terrified I can’t take care of myself. And part of me feels like I’m going insane and can’t trust myself. And part of me wants to give up so badly because I have very little objective proof to show how bad I feel. There’s no test anyone could give me that would show what it’s like to always feel like you’re drunk without the euphoria. Or like you’re on a tall mountain, gasping for air.

It’s not enough to call anyone’s attention. Just enough for me to suffer and feel unable to take care of myself well. So I look for answers. And I worry I’ll alienate myself from everyone because of the way I act when I’m sick. I worry that I will undermine everything I have worked towards for years. Any bit of dignity and respect I fought for could be gone. I’d be left with nothing.

The only thing I can do right now is tell myself that my brain is weak. And the thoughts that come might not be reliable. And as long as I know that, I can’t be lost completely to madness. But I wish I didn’t have to do it alone. I wish I could just take a back seat to my own care and let someone else call doctors and go to visits and read articles and order groceries and respond to voicemails and keep track of appointments and vitamins and medication and on and on.

But it’s mostly just me. Fighting not to lose me. The best parts of me. And any credibility I might have. I’ve seen how little my life is worth when the chips are down. I don’t want to end up in a home or a hospital. Dismissed and forgotten and collecting dust.

So I tell myself to rest. And wait. And pray. And hope. Because, really, there’s not much more I can do.

I don’t pity myself. I’m just angry. I have things to accomplish. People to help. I don’t have time or money to spend on this misadventure. This big, beautiful brain that is capable of so much. It just feels like such a waste.

Limited friendships and self-care

I am so grateful for friends. I know what it’s like to not have them. I know dark times.

So treating friends well is important to me. I’m going to be good. I’m going to give. And I try not to take too much. I’m very aware of all of this all the time. And I’m autistic. This isn’t supposed to be my strong suit.

2020 was what it was and it taught me a lot. Value people for what they bring and who they are. No one person fills the slot of friend. Everyone brings something different.

2021 is teaching me to respect myself a lot more. I will give and put my needs in the backseat and justify it for a million reasons: they’re young, they have no relevant experience, they’re hurt, they’re scared, they are using what they learned in survival times.

I can do that, but it doesn’t mean I have to give friends 100% me. Drop me to tend to them. Things have been hard this year but I made them harder by letting people slide when they’ve been greedy or careless. I haven’t been respecting my own boundaries.

Why haven’t I been respecting my boundaries? Because I like to pretend I’m not sick. I like to pretend like I’m not disabled. Who wants to hang out with a disabled sick person? Who’s going to invite that person out?

That’s self-hate. And it stops today. I have a lot to offer. And if people can’t appreciate my limits, even when I vocalize them, I have to accept that.

I can start enforcing boundaries today. And if friends can’t be there for the real stuff, that’s ok. They can still be friends. But they don’t get 100% me. They get 15%. They get what I am willing to give. They are good time friends.

If they mature…if they become more realized people, then we can reevaluate at that time. But I can’t be fun time Vene to everyone to make them comfortable. They get fun time Vene when I have the energy to be her. When I feel like being her.

I don’t need to apologize for going through a really hard time or being autistic. And I shouldn’t have to show stigmata to prove that I actually am. If they can’t grasp how hard it is because they have nothing to compare it to…ok…they get put into “Fun time Vene” rotation.

The people who do get it, who’ve been so supportive, who’ve been patient with me, who’ve shared their experiences, who’ve modeled empathy and compassion: Thank you. Thank you. Thank you.

I know you go through hard times to and don’t always share them publicly. I see you. I honor you.

I have to start distinguishing the two. Not resenting the green ones because they’re ignorant. Not resenting the limited ones because they’re not capable of more. But also, I get to decide what I give. And if I’m hurt, it’s because I was expecting more from people who don’t or can’t be more. At least not yet. That’s on me.

I’ll melt with you

I woke up this morning from my second dream about being a secret fighter in a revolution that takes place somewhere in Southeast Asia. I keep seeing a globe. But it’s drawn with the Indian Ocean as the center. I keep hearing the world Colombo but I know it’s not Sri Lanka. More like Singapore if it were bigger and had agricultural land. I don’t even know when these dreams take place because the clothes can’t be dated.

I wake up and a song is playing in my head: Lean On by Andy Shauf.

Winter is coming in through the closed doors
I have been waiting for this
Summer will go and will make room for snow
Start getting ready for the cold

If I am the wintertime, then you are the spring
You’re always full of new colors
I’ll take the leaves off of every single tree
And you’ll always beautifully recover

If I was stronger than I’ve ever been
Would you stay here by my side?
Or would you think since I’m now stronger a man
That I don’t need someone to lean on?

Well I think the strong man needs somewhere to lean
I think he gets a little tired
Then we emphasize strong, and we leave off the man
Strong is only part of the title

And so winter is coming in through the closed doors
I know you’ve been dreading this
We’re losing our warmth
And we’re losing our freedom
But we can get by if we’ve someone to lean on

I’ve been feeling unloveable this week. Not like people will never love me. I know they do. But I think I’m friend loved. Not loved by someone in a romantic way. Maybe this is good because I’d run away from anyone who showed romantic interest in me. But I feel incomplete. It’s ridiculous.

I feel like an ice queen. And I just want to be able to melt into someone for a little while.

I can’t imagine being loved like that. Letting my guard down. I wouldn’t know how to let down my guard anyway.

I read last night about Liliths or black moons. Mine’s in Leo. Like I needed any more confirmation that I’m a narcissist in constant search of external validation.

My birth chart reads like a cliché: ambitious, charismatic, witty, distaste for the superficial, creative, no ability to handle money, doesn’t seek the spotlight, likely to become famous, difficulty in love.

Also, Elon Musk came out on SNL last night saying had “Aspergers.” Uuuuuuuugh. And that he is the first Aspergian host. Uuuuuuuuuuuuuuuuuuugh.

No he’s not. It’s Dan Aykroyd. There are lots of funny autistics. I wish Elon would do what his self-driven Tesla’s won’t, and stay in his lane.

Tired to death

More medical stuff today.

I’ve been trying out a concierge medical service that doesn’t do much called Forward. I have an HMO, which means about all Forward can do is act on top of that.

I messaged Forward using the app today because the anemia is pretty bad and I can’t get into my PCP until the end of the month to even get a referral to a hematologist. The anemia makes it almost impossible to function. Emily had to order food for me because, even with a stocked kitchen, I couldn’t cook. I couldn’t even order food for myself. And I could barely make it down and up the stairs to pick up the delivery. This is real. I don’t have to make it up.

Their advice was to go to the ER. When I was in Tucson, I went to my private osteopath and paid out of pocket for iron IVs. This worked for me for about seven years to regulate my iron. It would work now if I could find someone who would help. I know the solution. I just can’t get anyone to listen to me, believe me, or help me.

Why isn’t the ER a solution? Because I can’t even handle being in a doctor’s waiting room for an hour without the potential of a meltdown. I certainly can’t advocate for myself in an ER. I’d get there, decompensate, wait forever, get poked and prodded, wait some more, get treated like cattle and maybe a hypochondriac, and then have to come home after treatment (optimally) and stop talking for a week.

ERs are very scary places for autistics like me. ERs are very scary places for everyone. But I can’t go. At least not without some kind of patient advocate who knew my medical history and would help. That doesn’t exist.

The nurse practitioner from Forward got upset with me because her two options were: 1. go to the ER or 2. come into Forward so we can tell you to go to the ER. When I said those were the same thing…and were there any other options, she started calling me ma’am, which is never a good sign. Long story short, Forward can’t do anything for me except take more tests and charge my insurance company.

I don’t care how frustrated the nurse practitioner was with me. She wasn’t presenting solutions and however frustrated she was, I’m 10x more frustrated because I can’t get to a simple solution of dignified care. I just need someone to read my blood test results, listen to me, and stick a needle in my arm and pump it full of iron.

The only way I can get quality care in this country is to pay out of pocket and go around the existing systems. That takes a lot of thinking. It takes a lot of money. It takes strategy and self-advocacy. I don’t always know what’s wrong. I live in a body that doesn’t act the way others’ do and I have to try to explain things to people in a way that doesn’t make sense to them because all they ever learned was how to memorize common symptoms.

Autism isn’t just an intellectual disability. It affects everything about me. And no one teaches autistic patient care. Everyone just expects autistics to have parents to advocate for them. It’s unrealistic and it contributes to the shorter lifespans autistic people can expect to live.

We die younger. We die younger. We die younger.

I don’t know what else to say.

Franco unAmerican

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:

Hi XXX,

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:

Hello everyone,

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.

Veneranda Aguirre

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.