I’m Autistic: Here’s why I’m Avoiding Diagnosis

tl;dr, It’s about Britney Spears

When I was a child, despite mounting evidence to the contrary, autism was understood to be a developmental disorder that only presented in boys. When I first learned about it in school many of the symptoms resonated with me, but because I am female I figured it was just an odd little coincidence.

As I grew up I have been given a number of explanations for my varied awkwardness. I’ve been diagnosed with depression, there’s been speculation I have obsessive compulsive disorder, and on occasion it’s been suggested I have high anxiety. Cool.

Same, Abed. (Community, Sony Pictures Television)

My story is pretty similar to that of a lot of female high-functioning autistic adults. We run about being terribly awkward and uncomfortable for most of our lives, often but not always having very messy houses and advanced degrees and accruing a number of diagnoses which do not fully explain our suite of symptoms. Then we hear about autism and a lightbulb goes off.

In women and girls autism often goes undetected because of how girls are pressured to socialize. One of the diagnostic criteria — if I can be so formal — is inability to make eye contact. Others are selective mutism and inability to naturally make or understand facial expressions. Another big one is inability to communicate … full stop. But a lot of women with autism are actually quite skilled communicatively. Some are writers.

I actually had a very frustrating conversation with a man who presented himself as a psychiatrist who really didn’t understand this concept. He wasn’t my doctor, I met him in the before times when my partner was playing tennis. I tend to be very open about being unable to recognize faces because I find that if I’m not people get offended. Can’t imagine why. But I told him and explained it was likely due to autism.

So he asked more questions and I told him that because I am aware I have these difficulties with understanding neurotypical facial expressions I have taught myself to make eye contact and be very attentive to faces and facial movements. I now know that a smile is a smile but only if certain muscles around the eye are activated and I know that if I make a similar motion with my face people will feel more comfortable around me. Anyways, he just completely dismissed the fact that I had taken years to learn what most people learn by apparent osmosis as evidence that I’m not actually autistic because “people with autism can’t understand facial expressions.” Thanks neurotypical. Thanks.

Self-Diagnosis! Yay!

So, okay, I recognize that there is an unfortunate thing where people try to use neuro-atypical self-diagnosis or claims of various disabilities to be jerks. There was and maybe still is that fake placard that Americans have been using to try to get out of wearing masks during a pandemic.

There’s apparently a similar thing in the UK but I have seen more of the American example so here you go. If someone presents something like this to you they are full of it. (Photo courtesy of the U.S. Department of Justice)

I can’t really prove to you I’m autistic, but let me lay out my symptoms a bit better.

  1. Prosopagnosia: I’m terrible with faces. I wrote a whole thing on it. And while not all people with prosopagnosia are autistic it does seem to appear more in people on the spectrum than in neurotypicals. Movies are my bane because I just can’t keep track of all these people particularly when they insist on changing costumes.
  2. Eye contact: I hate looking at people’s eyes. Maybe it has to do with the prosopagnosia, but it just feels way too intimate. I’ve trained myself to do this sort of counting thing while I’m speaking to look into people’s eyes and just deal with it, then look to another person or away for a bit and then go back and so on, but it’s just advanced mimicry. I’m not doing it naturally.
  3. Hyper-sensitivity: I can smell everything. EVERYTHING. If an animal poops a block away there is a good chance I’ll smell it. I recognize friends and family by smell. If you’re experiencing strong emotions sometimes I can smell the change in your hormones or blood or whatever it is that chemically create emotions. I know it sounds like a joke that “I can smell fear,” but yeah. I actually can. Sometimes I can do this with sound too.
  4. Hypo-sensitivity: Honestly, either I’m autistic or I’m a werewolf because I do randomly find serious bruises and scratches on myself that I don’t remember getting. I suppose it would be fun to be a werewolf.
  5. Self-soothing: I have a few motions and repeated phrases and little rituals that I kind of have to do to feel okay in certain situations. Some of them are probably not that disturbing, but I totally get why people might freak out when I start frantically mumbling to myself. And several of them involve scratching and … well see number four on this list …
  6. Magpie: My PhD supervisor was actually one of the first people to point this out and she didn’t do it as a, “what the hell is wrong with you,” so much as a, “could you please focus.” This is sort of one of the advantages to being autistic but people with autism do tend to get interested in a thing that isn’t relevant or useful and then get really really into it. A neurotypical might need a formal setting in which to learn but an autistic person will just dive straight in and teach themselves the subject. The issue is, it’s not always something useful. My tendencies in that area were derailing my thesis and my supervisor was trying to get me to refocus.
  7. Adherence to schedules and rules: This is something I do that I know bothers other people but I just can’t not do it. I need to be on time. To everything. For transportation and work that’s great, but I do it for parties. It took me years to realize that when there’s a milonga (Argentine tango dance party) I a) am not required to take the class in order to participate in the milonga and b) can show up an hour into the milonga and leave whenever I damn well please. Guys, I did not know this. And it took ages before I could actually do it.
  8. Inability to Lie: I can’t do it my dudes. I can’t even do it to be nice. If you look fat in that dress and ask me if you look fat in that dress, I will tell you that you do indeed look fat in that dress. It’s not that I don’t love you, I just can’t lie to you even if it makes you feel good. And unfortunately I have a great deal of difficulty telling of other people are lying and I get really mad if I found out they did even if they had a pretty good reason for doing so, like they were conducting psychological research and couldn’t tell me the entirety of the study before conducting the test.
  9. Literal interpretation of Literally everything: This folds into number eight above. I’ve figured out sarcasm but I figured it out in the same way I figured out facial instructions. British people thought I was just being terribly American, because Brits use considerably more sarcasm than Americans do, but no. It’s just me. There’s a scene in Veep where Senator Doyle is threatening to withdraw Party support, but instead of saying that he says that the Party leadership is stuck in traffic. Selina’s character instantly understood it but it took me three watch throughs to figure out that it this fictional world didn’t just have really bad traffic.
  10. Meltdowns: For me these are rare, but if you were say to take me to a dance club, I would have one. And it’s just neurological overstimulation. If you give me too much input all at once I can’t filter it out and it causes pain and panic. Again, they’re rare for me but they can really screw up my day and they’re triggered by unexpected overstimulation that I can’t escape.

Advantages to Diagnosis

As you can see, I’m pretty sure I’m on the spectrum as it were, but I’m also pretty clearly highly functioning. My partner does have to take care of me in various ways, but I could survive — and have survived — without him and I do reciprocate. In the UK there are relatively decent services available to people with various disabilities and I could possibly get therapy, I could access training designed specifically for me, and if I were worse and really needed it I could also get a carer. That would be someone who comes to my house and helps me do tasks that I can’t really do for myself.

The other thing a diagnosis would allow me to do is check the little box in job applications that says I’m disabled. I probably could do that now but even with a diagnosis to be honest I don’t consider this a disability and I’d really rather not claim considerations that are better allocated to people with more severe obstacles for inclusion.

It is possible that a diagnosis would help a therapist give me tools for getting around my various hang-ups and better blending in with you strange and inscrutable neurotypicals, but I really have no compunction in properly hiding my apparent autism. I get that I’m weird, but I rather enjoy it.

Autism doesn’t have a cure and it really shouldn’t, but there are in some countries services that can help people with autism in the areas of their life that are a bit more difficult.

AAAAAHHHHHHHHH!!!!!!! (Photo by National Cancer Institute on Unsplash)

My Fears

As I’ve said repeatedly I am high-functioning. I’m old enough to be President and I did it without formalized care so I can probably make it the rest of my life without intervention. While a diagnosis could open up support structures and care options for me these are not necessarily advantageous to me. In my case autism is not a disability; it’s just a different neurological arrangement that causes me to think differently from the majority of people.

But, while I understand this other people do not. There is still a pervasive idea that autistic individuals do not have empathy or really even emotions. I’m actually pretty mad at the Sherlock show with Benedict Cumberbatch because despite being clearly autistic his character repeatedly calls himself a “high-functioning sociopath.” I’ve been called a sociopath myself and honestly while sociopathy is apparently under the umbrella of “neuro-atypical,” issues it is rather distinct from autism. I do not wish to characterize sociopathy because I do not understand it and do not have it but people who do have said that they actually don’t have normal emotions and don’t have empathy whereas autistic individuals like myself not only do, but we experience emotions probably at a far greater intensity than neurotypicals. We just can’t communicate it.

I do have difficulty modulating my emotional reactions such that they can be understood by neurotypicals and I will err on the side of no visible emotional reaction because I realize how off-putting it would be if I let you see the entirety of what I experience. But my inability to communicate entirely obviously authentic joy, fear, annoyance, love, contentment, or hate does not negate the existence of those emotions. And while autistic individuals to tend to lack in “theory of mind,” which means basically we don’t really understand the inner thoughts and motivations of other people in the intuitive way a neurotypical might, that doesn’t mean we don’t care. I can be alone without suffering any ill effects, but I do care deeply for my friends and if I see a complete stranger in trouble I will go out of my way to care for them.

Literally no one’s going to get this joke, but I’m still terribly amused. Well, maybe not no one. George RR Martin might.

This makes me quite interested in the “unreliable narrator,” in fiction because the idea that a story could be told only from a narrow and fundamentally flawed point of view is really fascinating to me. But we’re getting off topic. Per usual. Per autism.

Just like the possible psychiatrist I was chatting with who was happy to dismiss my experiences because they didn’t match his conclusions, there are a lot of people in the world who might see the label of “autism,” on me and make harmful assumptions based on preconceived and incorrect ideas of what autism really is. I’m happy to be forthright with my neurological difficulties especially because while they are advantageous I am unlikely to recognize even close family members if I only have their face to go on. But it’s useful to me to be able to control the dissemination of that information. If people know me before they know I’m autistic they are less likely to make harmful assumptions.

In the UK where I currently live getting a formal diagnosis probably wouldn’t be all that bad at all. There will always be discriminatory fools, but the UK also provides care for disabled individuals and even with the looming threat of Brexit I do believe this applies to people on residence visas. There remains the labyrinthine and non-Euclidean bureaucracy of the Home Office, but after hiring a lawyer and doing more paperwork than was necessary in the founding of most constitutional democracies, it may be navigated.

But if I do decide to return to the United States all bets are off. Under the ACA, assuming it survives, I’m relatively well protected. Sort of. Financially. But at present the American system doesn’t really have proper care for people with disabilities and without the ACA if I were diagnosed even if I didn’t seek care the cost of my health insurance would skyrocket. Just being a woman of childbearing age caused my insurance to skyrocket before the ACA became law so adding what would be considered a disability on top of that would be unwise.

And then there’s Britney Spears. No, I promise you I’m not magpie-ing again. I’ll explain. Basically everything relevant to my life happened in 2008, but back in that year Britney Spears had a sort of hugesque and very public break-down. And honestly it was fair. She was in her twenties, a mother to two children, making scads and oodles of money as a pop star, but known for being camp, risqué and a little trashy. Her husband kinda leveraged her to try to start a music career of his own which failed hilariously and they then had a very public and apparently rather messy divorce. Because she spent her entire childhood being groomed as a pop star and not much else she had no idea how to care for her children with or without their father present and all of her kind of honest mistakes were publicly excoriated for content via a media that clearly did not care for her wellbeing. The night of her breakdown she drove to a salon trailed per usual by paparazzi and told the hairdresser to shave her head. When the hairdresser refused Britney grabbed the razor and did it herself. Apparently, somewhere in here she also attacked one of the paparazzi with an umbrella.

This video by Jessica Kellgren-Fozard is what initially alerted me to just how crazy this issue is. And also: Jessica’s fabulous.

So, clearly she was having some difficulties, and a lot of this could be classified as “a cry for help.” But honestly, at least one of my friends regularly radically changes her hair every time she has a break up and honestly if I was being harassed by paparazzi while I was already stressed I too would likely be seen brandishing an umbrella at them. Yes, she was acting erratically, but honestly she had every reason to be. Anyways, she was put under a 5150 hold for evaluation. That part isn’t great, but given how public all this was and who she is there wasn’t really a way around it and temporary though I believe this breakdown was she did need some care.

The issue though and the thing that terrifies me is the conservatorship that followed. Britney’s father was granted control of … well … everything in her life from her finances to her contract to her will. It might be a bit dramatic, but there’s some talk that Britney can’t even get a cup of coffee without his permission. And yes, I appreciate that people with bi-polar disorder — it’s largely agreed that that’s what Britney has — can be incredibly impulsive during manic episodes, but Britney is a world renowned superstar and rich beyond imagination. If she wants to pop off and buy a $100k purse then that is her business. You can argue that there are more worthy purchases or uses for money, but its her money and while I don’t earn that in a year she can make several times that in a single concert. Again, I don’t really have a lot of love for pop music, but she did work hard to learn how to dance and she is a pretty incredible performer so … let her spend her money as she chooses. It’s fine.

I know the Christie’s Auction House for their Edo and Meiji period Japanese artwork, but evidently they sold this bag for $379,000. I cannot even. Can you even? I cannot. (Photo Courtesy of Christie’s)

But conservatorships don’t just cover financial matters. A conservator can sell one’s house right out from under them, but they’ve also been known to do things like take beloved pets away and euthanize them. Legally. One would hope that a conservator be a responsible family member but this is not always the case and can easily lead to an abusive situation. And once in a conservatorship it’s quite difficult to get out. It’s sometimes difficult to get out even when the conservator themselves agree that the conservatorship is no longer necessary. Britney’s been fighting her father on this apparently for years with limited success. But again she is a bit older than me and worth ohmigod so much money. If she had access to her fortune she could hire out multiple firms if she really wanted to.

Bipolar disorder is actually pretty darn manageable once you figure out what it is. Assuming that’s actually her issue, she’ll have manic and depressive episodes but there is medication available and she could easily hire a team that included a therapist or psychiatrist to just be there for her when she needs the extra care. And the thing is we don’t actually know if she is bipolar. One, it’s not really our business, and two given all the pressures in her life and how weird her life was even in her formative years it’s honestly a bit surprising she didn’t have a much bigger freak out much earlier. So if Britney Spears can be more or less enslaved for life just because she had one little slightly questionable episode back in 2008 what the hell chance do the rest of us have?

AND IN CONCLUSION ….

Your mileage may vary on whether or not you think I’m being paranoid or whether or not you actually believe I’m autistic, but at the end of the day it’s not really about you, is it?

I can function just fine without a diagnosis and actually without treatment so based on that you could reasonably argue that I do not have a disability at all and therefore have no business talking about autism or disability rights. And on the first point I would agree. Autism does cause me a few difficulties in my day to day life and because of it I do take longer to complete certain tasks, but I am really textbook high-functioning. I have better focus than neurotypicals, I have better pattern recognition than neurotypicals, and I am more perceptive than neurotypicals. For the most part for me this is a super-power rather than a disability.

Being a redhead makes costumes super easy because honestly I just have to don black spandex and a clunky belt and I’m either Jean Grey, Black Widow, or Mara Jade. (Jean Grey in New X-Men by Phil Jimenez and Andy Lanning)

To be honest I’m not a huge X-Men fan, but I do feel very seen by that series. There are people who think I need to be “cured,” and find my very existence frightening and problematic, but I can easily pass for normal when I need to, and I have all these extra neurological advantages over you silly normies. (I’m kidding, genuinely love you guys. I just understand the world in a very different way and don’t always get what you’re trying to tell me.) I mean, I can’t lift things with the power of my mind, but I am able to perceive really complex patterns that can be mathematically proven that no one before me saw. So, do with that what you will.

Knowing that I am autistic helps me explain myself to people who find me off-putting because I can’t really regulate emoting in a natural way and I get the impression to a lot of people I come off as a bit uncanny valley. But at the same time a diagnosis is not going to help me and may actually put me at risk. So, despite how funny I find it to do the contrary, I have decided to use my powers for good rather than evil.

I’m pretty sure even without a diagnosis most people will be fine with me advocating for disability rights particularly for neuro-atypical individuals. I’m relatively okay with people knowing that this is my thing, I just don’t want it formalized because that could limit my civil and human rights in the future.

Doctor of Palaeopathology, rage-prone optimist, stealth berserker, opera enthusiast, and insatiable consumer of academic journals.

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