Seven things I wish I would not hear as an autist

Photo by Annie Spratt on Unsplash

• 1: Being neurodiverse is a superpower
• 2: You do not look like an autist
• 3: You could be normal if only you tried harder
• 4: You behave this way because you enjoy hurting people
• 5: You are a psychopath
• 6: You do not belong here
• 7: Autism is exaggerated these days, everyone says they are on the spectrum
• Summary

Among all the health conditions, diseases, disabilities and neuro-developmental challenges, it seems that Autism Spectrum Disorder is notorious for giving everybody a solid headache, no matter how they came to interact with it - as researchers, diagnosticians, autists ourselves or people who just are there around us as our family members, partners, friends or acquaintances.

First of all, there are not a lot of conditions I heard of that would have spectrum in their official name, and this already tells a lot. Have you ever heard of flu spectrum or sexually transmitted diseases spectrum, or have you been diagnosed with depression spectrum disorder? Me neither, so far, and the reason why autism is one of the few exceptions I have ever encountered is how ridiculously diverse and varied our lot is:

• One may have some over- or under-sensitivities to various sensory stimuli, but this is not exactly mandatory, and both the intensity and type of those sensitivities are a highly individual matter.
• One develops their own coping mechanisms to deal with stress and over-stimulation, which may range from innocent and unnoticeable, through awkward, creepy to even outright illegal.
• The list of deficiencies that can be present or absent in an autist is quite long, and again the intensity and way they manifest themselves varies.
• Even if two individuals act similarly, they may do it for different reasons. Likewise, two autistic individuals may do one particular thing differently, even though they both arrived at their solutions quite rationally and starting with similar assumptions.
• It is not always visible, and this can be due to milder symptoms and/or due to coping mechanisms and masking strategies an autist adopted to better fit into the society.
• Even when some autistic traits are visible, they can be easily confused with other conditions - and vice versa. It is also not impossible for an individual to both be autistic and have that other condition.

Before getting officially diagnosed with Autism Spectrum Disorder, I have seen plenty of these traits in myself and I was left wondering for multiple years - is it true, or have I gaslit myself into believing I am autistic? It did not exactly help, too, that diagnosing autism in Poland is far from developed, especially for adults. This, combined with all sorts of prejudice about autism and how it should or should not look like, led to not being diagnosed until adulthood, and attributing my difficulties to not trying hard enough or outright malice.

1: Being neurodiverse is a superpower

I will start with my most recent observation - that autism happens to be advertised as giving us superpowers, like unparalleled problem-solving or perseverance - perhaps in an attempt to be more inclusive and/or soften up the still popular narrative of autism being an end-of-the-world life sentence.

Reality is, as always, more complex, and at least in my case autism makes me neither a superhero, nor a person who cannot take care of themselves in everyday life. A more accurate analogy to an autist could perhaps be a glass cannon - capable of punching well above my weight if the conditions are right, and if I can leverage my strengths to their fullest, yet at the same time just absurdly helpless and confused in some everyday situations or when expected to act like a non-autist. To give an example:

• I am born a problem-solver, and consider problem-solving activities as one of my fundamental needs - which means that given time and autonomy, I will keep pondering and tinkering until given problem is solved.
• What is problematic, though, is that it sometimes turns out the problem was not supposed to be solved, or the privilege of solving given problem belongs to someone in particular, say, a Software Architect and not a mere Software Developer. Or that as an intern, I was expected to be stuck with this problem indefinitely, and since it is already solved I need to be given something else to do.
• Either way, perhaps I could realize all of this before it is too late if not for one of my challenges - namely, I do not really read between the lines. Unless I am explicitly told that something should be left as-is just to avoid drama, I will likely fail to spot it if the drama would start right in front of me.
• As if it weren’t enough, I am not only poor at reading between the lines in terms of social cues or non-verbal communication, I can also miss the signals entirely. Ask my wife how long it took me to realize we were dating and that she genuinely shown romantic interest in me. Frankly, I trust her simply because she explained it to me multiple times, though I still cannot get it how and why…

2: You do not look like an autist

Well, what does an autist look like, then? As mentioned before - it is not about having shaking hands and twisted eyes - at least, not always and not exclusively.

There are sometimes those visual indicators that you might be talking to an autistic person - for instance, avoiding eye contact and clumsiness - though these arguably have the least impact on my everyday life, and can be practiced - to get more comfortable with making an eye contact, or to improve coordination. Things that have the most profound effect on who we are are those that often cannot be easily seen - you can readily observe I might struggle with interpreting your suggestions or miss the entire context of why you feel upset at me.

What you cannot see, though, is me not being able to figure out what do you expect of me, or what did you actually try to tell me, why do you feel the way you seem to feel, and becoming increasingly stressed out, because attempts to apply my logical-mathematical skills to resolve this situation only make it worse.

3: You could be normal if only you tried harder

No. My - and probably everyone else’s - autism stems from factors that cannot be fixed by trying harder, cannot be undone, and as of 2024 the advances in medicine still do not allow to cure autism. Unless it becomes possible to undo or fix what genes you inherited - yes, autism seems to run in families, too - or somehow re-wire your brain so that it works like that of a neurotypical person, my traits cannot be fixed.

Best I can do is:

• Having honest conversations with you to improve mutual understanding,
• Developing some coping mechanism here and there, mostly to deal with stressful situations and avoid ones that could get me in trouble,
• Focusing on things I am good at, and ask for help in areas that are problematic for me.

Still, even with all the support, coping mechanisms and masking strategies in place, I cannot be normal as in neurotypical - mimicking and emulating certain patterns and behaviors in particular contexts, though sooner or later I am going to make another mistake. Being neurotypical or not is kind of hardwired into your body, and is not a matter of learning or choice.

Would you try to teach a color-blind person to see all the colors, or ask them if this can be fixed with some color-blind glasses? No, because seeing the colors depends on having all three types of cones in your retina, having all of them working properly, and then having them connected to the nervous system in the right way, and the nervous system also needs to be wired properly to make all of it work. Otherwise, you end up with a problem that cannot be easily fixed. Coping mechanisms and visual helpers may be useful - for instance, using signs and geometric shapes to help color-blind people distinguish elements of distinct colors, or remembering the order of traffic lights. One of my color-blind friends did exactly this to cope with European traffic lights, only to be welcomed by horizontal traffic lights on his trip to Slovenia a few years back…

4: You behave this way because you enjoy hurting people

I heard this and similar statements multiple times throughout my life, especially from closest ones. Let me put it this way - 80% of negative consequences of my awkward behaviors is that they backfire at me. You can roll your eyes when I say something totally out of place and move on, or feel utterly insulted for a few hours because I failed to spot the non-verbal hints you gave me. I am going to live with a label of a trouble-maker who does nothing but insults people by my sheer presence.

To make it clear - I do not think autists are born angels, incapable of being jerks and deliberately hurting people, and I acknowledge I keep getting myself into trouble, and that some people genuinely feel bad while being around me. What I strongly disagree with, though, is attributing this to some deliberate, evil intent I am supposed to have. The thing is, if I were genuinely inclined to make someone feel miserable, I would be neither willing to nor capable of concealing that.

5: You are a psychopath

This is an extreme variant of the previous point - and perhaps stems from assumption that autists must reason similarly to neurotypicals, and that we act with similar motives and sense exactly the same things that neurotypicals do. Sure enough, dealing with an autist may be just as exhausting as dealing with a psychopath, and end results may be similar, too, but the way autists and psychopaths end up hurting people around them are entirely different, if not opposite.

For your convenience, I assembled a table to help highlight the key differences there:

6: You do not belong here

Unsurprisingly, as an autist I barely belong anywhere, and there were very, very few places and communities where I felt I belonged at least moderately:

• University, and some student research circles in particular,
• Internet communities e.g. Discord servers,
• IT forums, such as 4programmers.net - at least while we still had discussions other than those about abortion.

These sorts of environments were ones where I did not stick out like a sore thumb that much, which is not to say I did not stick out at all. School and workplaces are a completely different league, however, and here I have invariably struggled to fit in throughout my life. Frankly, the only moderately effective coping strategy to survive in those I managed to learn is to become as absurdly productive and useful as I possibly can to somehow justify my existence.

You do not belong here is a theme I kept hearing and seeing virtually everywhere, in various forms:

• Rejection from the group at pre-school and school,
• Being told things like “you know, it’s good you are leaving” after handing in my resignation,
• Making remarks such as “you should not participate in the meetings, stay low and do not talk to people” at a workplace,
• Giving genuine feedback that in order to be able to stay in a workplace, or get a positive annual review, I need to change because I cannot be accepted as who I am.

7: Autism is exaggerated these days, everyone says they are on the spectrum

According to WHO, the prevalence of autism is estimated at 1%, however this number may not be accurate - WHO themselves report varying results being measured by different studies, the data is not representative of all groups and nationalities, and moreover there are signs males are more likely to be autistic, and females are better at masking autism - with the ratio of autistic males to females being approximately 4:1. This means that less than 1% of females, but more than 2.5% of males are reportedly autistic.

To make things worse, some autists, including myself, do not get diagnosed until adulthood. Submitting oneself to medical examination in Poland is a rather bumpy ride - I spent considerable time to figure out whether I can do this via public healthcare system - I pay the taxes, after all - only to find out specialists are few and far between, and it would actually be more convenient to pay out of pocket for private examination. Moreover, while some of us are able to keep a job and remain part of the society - even as an outsider and weirdo - some are not. Social withdrawal, combined with discrimination and rejection when one actually tries to integrate into the society, and the fact that autism is most visible in individuals whose autism is most severe and/or combined with other conditions - and who thus need to be cared for - may suggest these numbers could still be underestimated.

That being said, remember that autism is defined as a spectrum - so any numbers on autism prevalence would apply to individual with autistic traits profound enough to meet diagnostic criteria, which have been changed over the years. After all, not so long ago Autism Spectrum Disorder was classified into several separate categories, depending on presence and intensity of particular traits, as well as the level of intellectual development - hence, my DSM-10 diagnosis states Asperger’s Syndrome. What this means is that an individual may be somewhat autistic, presenting only some of the traits and/or only mild intensity, and while today this level of autistic traits would not be considered as an disorder or disability, it might change, and regardless of diagnosis it is going to affect one’s life - one way or another.

Besides, why would anyone want the world to believe they are autistic if they are neurotypical? There is a lot of stigma and prejudice associated with autism, and the few benefits it is associated with is usually the ones you are either born with, or develop them due to your inherent traits. You will not become a better problem-solver, or start seeing patterns simply because you self-identified as autistic, you either have these skills and/or potential to develop them, or you do not, and autists have no monopoly on them. Surely enough, you could apply for reasonable accommodations at work, but those could include things like ensuring a quieter workplace. An extroverted neurotypical could possibly even perceive these accommodations as a torture, as they would not truly cater to their needs.

Summary

I hope this post gave you a hint of how the reality looks like from an autist’s perspective, and will help you better understand how some of us navigate the reality around us. Keep in mind, however, that what applies to me may or may not apply to other autists, and thus needs to be taken with a grain of salt.