Notice any unusual behavior in yourself or your loved ones?
Find it hard to do what others do with ease?
Do with ease what others find hard to do?
Perhaps this site will give you an explanation and change your whole life for the better!
Discovering myself
I always thought I was somehow different from other people.
On one hand, some things were difficult for me that seemed easy for others—like being open and relaxed in conversations, certain school subjects, and some parts of my job. There have been times at work when I didn't understand what people wanted to say, even though others understood them perfectly - as if we were communicating in different languages. On the other hand, I often felt my actions were more logical and organized compared to those around me. The results of my work also tended to be more “perfectionist” (I noticed this especially in my programming job when reading code written by other developers).
I always suspected that something was different about me, but I didn’t know exactly what. Recently, though, “the puzzle came together,” and everything became clear. At the age of 48, I suddenly realized I wasn’t the only one who felt like they were “sent to this planet from deep space.” There are millions of us—people with a genetically different nervous system and brain structure.
I’ve seen estimates ranging from 1% to 4% of the population, but based on the people I see around me (though I could be wrong), the real number seems much higher. Many people are not only undiagnosed but don’t even suspect they have something that actually has a name (just like I didn’t until recently). Some go through life never realizing they simply belong to a different category of people—and that they’re not flawed versions of the only “normal” category. They don’t even know these categories exist (did you know about it a minute ago?).
Contents:
• AQ test
• The situation became clear. I saw my life in a completely new way.
• "But you don't look autistic!" ©
• Let's be classified?
• Let's be... not classified!
• And more about self-diagnosis
• Not a pathology, but an alternative way of being
• Introduction to ableism
AQ test
It was pure luck that I took an online AQ test (AQ stands for Autism Quotient—not to be confused with IQ, Intelligence Quotient!). Take a few minutes to try it yourself. Your score will give you an idea of whether you're likely or unlikely to be on the autism spectrum. You might learn a lot about yourself! What you think autism is may be far from the truth if you've never explored this topic. The test "is published in a peer-reviewed scientific journal and has been statistically validated for sensitivity and selectivity" (source in Russian).
Autism is a neurotype (a developmental difference) considered a hidden disability. It affects how people experience the world and interact with others. Autistic people process information differently, which makes them see, hear, and feel the world in unique ways.
You can't "get" autism—you can only be born autistic. It's lifelong: autism isn’t an illness and can’t be "cured." Many autistic people feel that being autistic is a fundamental part of their identity. Autism is genetic and is caused by differences in the structure and functioning of the brain, which affect how people perceive the world.
Autism (along with conditions like ADHD) falls under the umbrella of "neurodiversity," and autistic people are considered "neurodiverse." Together, they form a "neurominority." In contrast, non-autistic people are "neurotypical," forming the "neuromajority." Neurominorities are similar to sexual minorities in that both represent natural, healthy variations of human diversity. But here, we’re talking about differences in how the mind works, not sexual orientation or gender identity. You’ll soon notice that both communities use multicolor symbolism.
But I’m getting ahead of myself. Let’s go back to the test and the potential life-changing realization it could bring—explaining difficulties you may have faced all your life.
The test scores range from 0 to 50, with different ranges indicating varying likelihoods of being on the spectrum. Here’s a breakdown from the video Everything You Need To Know About The Online AQ Test:
• 0 to 10 – absolutely no autistic tendencies.
• 11 to 21 – the average for most people.
• 22 to 25 – above-average autistic traits.
• 26 to 31 – a borderline score; 86% of people in this range are correctly identified as autistic.
• 32 to 50 – a strong likelihood of being autistic. 80% of autistic adults and only 2% of non-autistic participants scored 32 or higher. 43% of autistic people scored above 38, while none of the 174 non-autistic participants did.
So, a high score strongly suggests you're on the spectrum, but a low score doesn't completely rule it out—this isn’t an "absence ofautism" test.
I scored 37. Of course, this is only an approximate tool, but in many cases, it aligns with professional assessments. [ADDED LATER: That’s exactly what happened for me, 1 year and 3 months later, when I was officially diagnosed with autism.] I highly recommend watching the video Self-Diagnosis Of Autism: Is it valid? In short—yes, it is!
A friend of mine, whose autism is more noticeable and who has an official diagnosis, scored lower than I did. He explained: "I got 34, but I think it’s because the test focuses more on social stuff than sensory stuff."
Another test is here.
Online testing is just the first step in self-discovery. If your score is above average, the next step is to dive deeper—research online and compare the information to your own experiences (this page is a great starting point). Autistic people are known for developing "special interests," diving deeply into topics they care about. Often, after someone realizes they might be autistic, autism itself becomes their special interest, at least for a while.
As you keep learning, you might find that the AQ test was wrong in your case (though it wasn’t for me). You may even decide to take the third step: seeking an official diagnosis.
The situation became clear. I saw my life in a completely new way.
As far as I understand from the test and from many articles and videos, I am undoubtedly on the autism spectrum (level 1, previously known as high-functioning autism or Asperger's syndrome). How much better certainty is than the unknown! Many previously confusing problems now have an explanation. Some peculiarities in perception and thinking that I always saw as shameful flaws—things I believed I was responsible for—turned out to be completely natural for certain kinds of people. Trying to change or overcome them isn’t just pointless, it’s impossible—they’re beyond the control of my desires or willpower. It’s simply how I’m built; it’s in my genetics.
After feeling different for so many years, facing countless challenges, and painfully not knowing why, I’m still the same person. And yet… I’m also different. Nothing has changed, but at the same time, everything has changed—discovering that I’m autistic was a turning point. I reframed my self-identity and found a completely new version of myself. Suddenly, it became clear that I wasn’t a broken neurotypical person, but a normal neurodiverse person. There was no longer any reason to blame myself for anything. This realization felt like being acquitted by a court, finally cleared of a wrongful conviction after decades. Why wasn’t I told this when I was a kid???
The experience of the guy from this video is very similar to mine:
"Asperger's put a name to something that I felt like I'd been struggling with my entire life. From as early as I can remember, I've had this feeling that I was different and that difference was bad, so you can imagine that finally putting a name to that and embracing that difference was incredibly liberating."
The girl from this Russian video is just reading my mind:
"I reacted to the diagnosis with great relief. When all your life you don't understand what the hell is going on with you, why you are different from others, and then they say to you: "That's why!" - it is such a relief, it changes everything so much, it gives you answers to so many questions! It really became a very big push towards a better life. I began to understand what to do, how to arrange my life, how to build interactions with people."
From here (in Russian):
"I am 37 years old, and now I have received the answer to the question that has puzzled me all my life - why I have such a hard time doing things that other people take for granted. This diagnosis put an end to a lingering personality crisis. For the first time, I realized what explains my special talent for being so smart and so stupid at the same time."
I completely share what the other person expressed in another Russian video:
"My first reaction was that I understand that some issues cannot be resolved, i.e. I can never become like everyone else. All my life I suffered from the fact that I could not become like everyone else, and because of this I tried to become better than others. This caused problems. And then I finally found out that I couldn't do it, because I am not like everyone else essentially. I quickly realized that since this cannot be achieved, then - ok, I don't have to worry about this anymore, I can proceed from what already exists. I am not like everyone else, so I will be what I am now. And I suddenly stopped worrying about it. So, in fact, it was such a good discovery, as I soon realized."
From a Russian forum:
Why does knowing my diagnosis make it easier? Now I don’t get so upset if something doesn’t work out like it does for everyone else. And I don’t push myself to the point of being depressed. If someone really wants something, they will make extra efforts and look for creative ways and solutions. But if they fail, they will know, “I did everything I could, but I can’t go against my nature.” If someone is short and isn’t picked for the basketball team, they will understand why. Before, I blamed myself and felt a strong sense of guilt, but now I’ve found an excuse: “I am just who I am.” It’s become easier to accept things, and many of my actions make more sense now. I had to spend quite a lot of time to: a) understand that if I can’t do something, it doesn’t mean I’m worse than those who can; and b) get rid of the feelings of guilt and inferiority that were deeply ingrained in me and learn to defend my right not to be able to do something—so that others take this into account and don’t demand it from me. In return, I can usually offer something that I can do."
A comment in the discussion of this page on FB (in Russian):
"My son is 10 years old. He read your story and cried. He said that he recognized himself and that it was good that he had read. Now he knows that he is not the only one like this, and it became easier for him. And there is no need to die or be afraid to live."
The thoughts and the feelings of the lady from this video are very close to mine too:
"...when I was 25 years old, I was diagnosed with autism, and it wasn't a tragedy. It was the best thing that's ever happened to me. Finding out that I'm autistic brought me an overwhelming sense of relief. My whole life, up to that point, finally made sense. My paradigm about myself shifted. I wasn't a failed neurotypical perso. I was a perfectly good autistic person."
From Telegram (Russian):
"...the diagnosis helped me validate many of my oddities and allow them to coexist with me. For example, I no longer suspect myself of stupidity and do not get upset when I remember that I like to process the relationship in writing, because verbally I have too little time to think how to say."
From the book Asperger Syndrome, the Universe and Everything (oh, I wish I'd known all that 40 years earlier!):
From the video Autistic People Aren't Broken NeuroTypicals:
"I was often setting myself to impossible neuro-typical standards, unfairly to myself for many years, when I didn't have the information that I was autistic. I didn't know I was a "square peg", trying to squeeze myself into a round hole, and I was damaging myself."
And here is what my virtual acquaintance Anna Deryuga, who does a lot to spread knowledge about autism in Ukraine, writes:
"Autistic people, regardless of ability or inability to speak, regardless of current developmental level, are neither "sick" nor "special."
They are normal, normal in the sense of their, autistic, norm, and being autistic is no more painful or shameful than being curly-haired, albino, or intersex. It may be many times more difficult, many times less comfortable, less "promising" in terms of education, career, or domestic independence than being someone else - but it's not shameful. Neither is the word "autism" shameful to anyone, and especially to yourself, because it's just the best "box" to date - a generalization of everything you were born with.
Many people with obvious problems that would be solved by knowing about autism are not ready to even start reading a popular article or take a test because "it's a disease", "it's a label", "I'll be in the same line with some retarded people, and I've spent my whole life trying to think of myself as NORMAL"....
It is necessary to change the narrative and the actual situation in society in the direction that recognizing yourself as autistic will not alienate you from society, will not devalue what you have achieved, will not "dehumanize" you to a "wild animal". You will just have a convenient name for your traits and experiences that did not fit into the previously known "boxes"."
I'll end this collection of quotes with a quote from... myself (FB):
"One day I came across a woman from Ukraine in a video chat. As it often happens, at first we were looking for a topic to talk about. I immediately realized that she was on the autistic spectrum (my internal "spectrometer" worked perfectly), but this had happened before—of course, I didn't say anything. She talked a lot about herself (it turned out she was 47 years old), and then asked if I was tired of her monologue. Then, without giving me a chance to answer, she "switched the TV program" and started a story about how she, when communicating in a company of friends, often rambles for a long time without a break before she notices that she has bored the listeners, but they say nothing out of politeness. This phenomenon, called info-dumping, sometimes occurs in autistic people, which is what I reported in the heat of the moment. The woman was offended—she thought that I wanted to insult her because autists, as we know, are plants that do not react to others, make inarticulate sounds, and bite. I immediately said that I myself am a diagnosed autist, so this could not be an insult. Seeing that her anger had subsided, I told her several typical autistic traits that I clearly saw in her. For example, I explained why she practically doesn't look at the camera but instead glances around, like an air defense radar or Elon Musk—many autistic people have difficulty making eye contact (which also applies to a video camera) because they are afraid of the evaluating gaze of others due to their rich life experience of negative evaluations of their words and actions. I also talked about her slow, slightly unnatural, and intermittent speech. At the same time, I explained that thinking slowly does not mean thinking poorly, and that many autistic people want to construct their speech perfectly so that they are better understood (a kind of perfectionism—again, based on personal experience of not always being understood). But there are not enough resources for that. My interlocutor was just petrified! I even thought the chat was frozen. I told her about some other typical things in the lives of many autistics (including "concrete" thinking, the need for precise instructions, executive dysfunction, and the problem with multitasking)—with full explanations of the reasons behind some of these phenomena. At one point, I noticed that the woman was crying. She was listening to my long story and crying! Then I heard what I had read and heard many times before on YouTube. All her life she considered herself "defective" because she was so different from others. When I quoted to her the well-known phrase that "everyone around seems to be playing a game, but they forgot to tell me the rules," she completely burst into tears—I hit the sore spot. Then she calmed down and said that she didn't even suspect there were other people like her. She always thought that she was the only one of her kind on the whole planet. It was her personal tragedy and a big intimate secret, and she never expected to hear from a stranger in chat-roulette a complete and accurate description of what was only in her innermost thoughts. So, in search of entertainment, I accidentally changed a person's life dramatically and completely."
BTW...
The Israeli army recruits autistic people to the military intelligence service. And it was the autists who discovered the law of gravity, created the theory of evolution and the theory of relativity, wrote the US Declaration of Independence and "Alice in Wonderland", composed "Turkish March" and "Bohemian Rhapsody", deciphered the "Enigma" secret code used by German submarines during WWII, established Microsoft, Apple, Facebook, and Tesla. I am writing all this not to say that autism is cool (it’s not cool at all, and it’s not true that most autists are smart or gifted), but to point out that if you find it in yourself, your child, or your spouse, don’t panic—life isn’t over. Things aren’t as bad as they might seem, although there are undoubtedly challenges. You were aware of them before, but now you know the phenomenon behind them and are armed with additional information.
"But you don't look autistic!" ©
"Autism spectrum" is a very general and vague term for a range of social communication phenomena ("autism traits") that can appear in different people in various combinations and to varying degrees. Autistic people are all different—just as neurotypicals ("NT") are not all alike. The stereotype that all autists are either severely disabled and unable to communicate or formidable computer geeks is nothing more than a meaningless cliché.
Within the spectrum, there can be people with obvious signs, as well as people you would never suspect are autistic.
There have been many cases where autistic people "came out" and heard in response: "No, you don’t have autism, you don’t look autistic at all!" (as if there’s some clear portrait that all autistic people should fit into). Never say this—it sounds like, "This is all in your head, don’t slander yourself!" Can you imagine how it feels for someone who IS autistic to hear that after years of struggling? You might not realize what you’re saying because you haven’t lived a day as an autistic person, but they’ve lived their entire life that way.
Invisible disabilities always involve more than what others can see. When someone says, "You don’t look..." in reference to a disability, what they’re really saying is, "I don’t see your struggles, so I doubt your claim." Maybe you don’t notice anything unusual because the harshness of life has taught the person you’re speaking with to camouflage their differences.
The "You can't be autistic, there's nothing wrong with you!" reaction is even worse because it assumes that autism is an abnormality.
From 5 Sensible Guidelines For Interacting With Disabled People (The Forbes):
"Don't try to minimize someone's disability.
One of the most common ways non-disabled people try to be kind to disabled people is to tell us in some way that our disabilities aren't noticeable or important.
Most disabled people want to be noticed and known for more than just their disabilities. But most of us don't want our disabilities ignored, overlooked, or minimized either.
Comments like, “I don't think of you as disabled,” “It's great how you don't let your disability hold you back,” and “You have overcome your disability so beautifully,” simply don't ring true for those of us who live with our disabilities every day. It doesn't matter how sincerely you mean the compliment –– these types of comments simply aren't what most of us need or want to hear."
Also, never say things like, “Oh, everyone is on the spectrum these days!”, “Who doesn’t have autism at least a little?”, “It’s fashionable now!”, or “Autism is a convenient excuse for the lazy.” Comments like these only show your ignorance and dismiss the daily struggles many autistic people face. Yes, non-autistic people might have certain traits typical of autism (like anxiety or difficulty in social situations), but that doesn’t mean “everyone is a little autistic.” It’s like saying everyone is “a little pregnant” just because they experience nausea, cravings, or back pain. You either are autistic, or you’re not.
Here’s another example: being 10 kg overweight isn’t the same as having morbid obesity and weighing 200 kg. Both are forms of being overweight, but only one is classified as a disability. Having 10 extra kilograms doesn’t make someone “a little morbidly obese.”
The presence of autism traits above average—referred to as the broader autism phenotype (BAP)—is not enough for an autism diagnosis. BAP usually involves minor difficulties in social and communication skills. It’s more common among family members of autistic people, reflecting the genetic roots of autism. A BAP test is here. I recommend watching this short video: But we're all on the spectrum somewhere!.
And finally, one of the most frustrating phrase: “suffer from autism.” Autism is not something people suffer from—it’s not a disease. People simply ARE autistic. What they suffer from are the demands and expectations that don’t align with how they experience the world. Just like LGBTQ+ people don’t suffer from being who they are but can suffer from homophobia, autistic people don’t suffer from autism itself, but from society’s misunderstanding and prejudice.
Let's be classified?
Autism is traditionally (which does not mean "correctly" at all!) divided into low-functioning (LFA) and high-functioning (HFA). Functioning refers to the physical ability to function in society and life in general (including self-care skills) with less or more need for support. It is not at all about the quality of brain functioning or the level of suffering (as some people mistakenly perceive this terminology).
• Low-functioning ("deep", "profound", "severe", "classic") autists "live in their own world," have enormous difficulties communicating with the outside world and managing daily life, and usually do not speak or speak with great difficulty and very poorly (although, sometimes, they write books and make millions on Wall Street). The fact that such people appear aloof and poorly responsive to external signals does not mean they don’t understand what is happening or are intellectually less developed than you. They need substantial or very substantial support from others.
• High-functioning ("mild") autists "live in a common world, but in a special way." They are better adapted to life in society. Although their life is full of challenges, they require less support (this is what the official classification says, though it is not always accurate). From the article Asperger Syndrome: 50 important facts about having "mild" autism: "If you have it 'mildly,' you're at the awkward midpoint of being 'normal enough' for everyone to expect the same from you as everyone else, but 'autistic enough' to not always reach those expectations".
Asperger's syndrome has always been considered a type of autism at the highest-functioning end of the autism spectrum.
"People with Asperger's Syndrome tend to develop speech in the same way as typically developing children, but they have significant social difficulties. These difficulties become more evident as they mature and social expectations rise. Because people with Asperger Syndrome are often quite intelligent but also “quirky,” the disorder is sometimes referred to as “Geek Syndrome” or “Little Professor Syndrome.”" (the source)
From the video Aspergers In Society - The Hidden Mental Health Crisis (Autism Documentary):
"Those with Asperger's Syndrome are generally indistinguishable from an average person. They often go without the social support that others on the autistic spectrum receive. They are given special education to help them fit better into society but they stand as some of the most vulnerable individuals at all stages of life. At school they are bullied, socially isolated. In adulthood 70% of autistics receive a significant lack of support from social services and at least one in three live with severe mental health difficulties."
According to the North American diagnostic criteria adopted in 2013, the diagnosis of Asperger's syndrome has been phased out. However, the term continues to be used in articles and blogs. Autism is now divided not into two, but into three levels (note that the terminology "High-functioning" & "Severe" is not official, but has remained in use since the time when it was used in diagnostics):
The critical point is that Level 1 ("high-functioning") autistics still need support.
Let's be... not classified!
In the autistic community itself, the opinion is quite different. Many people reject the idea of classification al all. They say that every autistic person is equally, 100% autistic. People struggle in different ways, but that doesn’t make them more or less autistic than someone else.
People with greater or lesser support needs do exist. However, the main problem with the current classification is that it focuses not on the actual need for support but on how visible that need is from the outside. For example, if someone is working but constantly suffering and struggling in ways that no one can see, they are still officially considered high-functioning, even though their struggles are very real.
The autistic identity is an entire universe. That identity is too complex, too unique, too infinite to be put on a single line.
There are at least five serious reasons to question the legitimacy of the existing classification.
• Dividing autism into low-functioning and high-functioning/Asperger is meaningless since the truth is much more complex. The spectrum is not one-dimensional (from "A little bit autistic" to "Very autistic"), but multidimensional (higher/lower scale separately for each of the many parameters which also can manifest themselves in different ways). Every autistic person has their own unique mix of traits, strengths, needs, sensory systems, interests, and personality. It can also be the case that if you compare two people, they have no coinciding traits at all. They may be the exact opposite of each other, but they are both autistic.
Many people have what is called a "spiky profile," which means the same person can have both pronounced abilities and disabilities—regardless of whether they require full-time support. A person can be high-functioning according to some criteria and low-functioning according to others. One day on Instagram, I came across descriptions of two completely different autists—one was typically "mild," and the other was typically "severe." At the end, there was one phrase: "Both of these people are me." Someone might seem "high-functioning" but struggle with basic everyday tasks, while someone considered "low-functioning" might excel in skills used daily. Moreover, the intensity of different traits can change over time—even within a single day.
• The existing diagnostic criteria are unreliable. They don’t "look inward" but focus on external behaviors. Autism is, first and foremost, a way of thinking and perceiving the world, while outward signs are secondary and may not be present in everyone. Specialists observe neurodiversity from the outside, without truly understanding what’s happening inside a person’s mind, which often leads to misinterpretation. What the diagnostician sees doesn’t always reflect how the person feels or thinks and doesn’t tell the full story. Many autistic people have become so skilled at masking their traits that they continue doing so automatically, even during assessments. These individuals may go undiagnosed simply because they’ve spent a lifetime perfecting the art of appearing "normal." From the video Autistic Communication - The VERBAL Spectrum: "The trouble with current diagnosis guidelines is that they're not based on the way a mind works but on opinions of how we express ourselves externally. If the diagnostician cannot understand the way we communicate, or they think we express ourselves too well, it will impact their assessment. This wouldn't be a problem if those assessments didn't shape peoples' futures, determining what opportunities and services will be available to us and the way others will interact with us, possibly for the rest of our lives."
• The diagnostic methods are subjective. There have been cases where one specialist has classified an autist as LFA, while another labeled the same person as HFA.
• Autism comes with both challenges and strengths. However, the diagnosis focuses entirely on the negative half—it’s even labeled as "Autism Spectrum Disorder."From the video We Don't Have a Definition for Autistic Success Because We Only Talk About Autistic Struggles & Pain: "Autistic people are so defined, especially by the medical industry, by our struggles, pains, deficits, and the hard parts in life. Often the joys, positive experiences, and our skills are completely ignored. We don't even, really, have a good understanding of what autistic success looks like, because, by definition, autistic people are often described by our failures. In order to receive an autism diagnosis, I had to be able to show the ways in which I was struggling to live up to expectations in neurotypical society and in the neurotypical world. If you look at the medical criteria for autism, it is written around our weaknesses. It talks about our deficits. In order to meet the criteria for an autism diagnosis, you must be struggling, or in crisis, or have your deficits on display, easy for someone else to see. If you are masking, camouflaging, good at compensating for your weaknesses, or are just well supported in life, it's much less likely you'll get a diagnosis; because you can be autistic and still managed to thrive in the neurotypical dominated society that we live in. ... Our current definitions of autism, and autistic people, have been written by non-autistic people, who have observed us from the outside, with little to no insight on the inner workings of the autistic mind, or why we do the things we do. They have written down a list of things that they found annoying, or inconvenient, about those of us whose minds work differently, and completely ignored the fact that autistic people, just like non-autistic people, are whole, full, and complete people. We are more than just our struggles and our weaknesses. We are also our strengths, our joys. ... What the current medical definitions of autism has done is taken everything that is different about autistic people, and spun it into a weakness, or a problem. Even some of the things that, actually, if looked at from another angle, can be part of our biggest strengths."
• Functional labels of any kind are used against us. They disadvantage us because they are based on how our autism affects those around us, rather than what being autistic means for us. These labels mainly exist to categorize and package us for easier processing by a largely neurotypical society, but they don’t actually help us. The labels don’t mean anything beyond describing more or less recognizable autistic traits. Worse, they can lead people to believe that "more apparent" means "more severe" or "more suffering."
Just because someone seems to be coping or masking doesn’t reveal the internal struggles they’re facing. What traditional labels often overlook is the difference between "high masking" and "low masking." "High functioning" is essentially code for "masks well enough to mostly pass as neurotypical." When autistic people are labeled "high functioning," their needs—and even the fact that they have a disability—are often ignored. Some autistics miss out on necessary support simply because they’re officially labeled "high functioning."
On the flip side, a "low functioning" person is often automatically viewed as incapable or lacking intelligence, especially if they are non-speaking. This can lead to a lack of respect and autonomy. Labels limit the opportunities for those considered "low functioning" and reinforce harmful stereotypes that prevent them from being treated with the dignity they deserve.
From the video High Functioning Autism (It's NOT what you think!!):
"High-functioning literally means invisible struggle. What it does not mean is reduced level of difficulty, reduced level of challenges. People talk about mild autism. And when you think about it in those terms, it sounds as though high-functioning means your challenges are less. Now that's sometimes true, but what it really means is whatever struggles I'm going through, you can't see them. It's like a duck paddling under water, putting in a huge amount of effort behind the scenes to appear to be doing really well. And we often do do really well. The key here is the amount of effort that it takes to do really, really well. And because of that increased amount of effort, we are often at our limit all the time."
From a FB post (in Russian):
"The idea of mild and severe forms of health limitations and disability is often not about how the person experiences condition, but about how those around experience it. If a person interferes with others, and makes their life difficult, then he or she is low-functioning: lost to society, a tragedy for the family. Such a person is unlikely to receive adequate accommodations that will allow him/her to unlock their potential and find a sense of comfort and happiness. Efforts will be directed to help those around such person, to compensate for THEIR discomfort. Sympathy is also directed to them. And if difficulties are visible only to the person who experiences them (like chronic pain), then he/she is high-functioning. Don't let him/her fool around and count on help. That person is doing just fine. And anyway, how is he/she not ashamed to ask for some kind of support with a mild disability, when there are people who are much worse off.
This is the cannibalistic model, in which the person with a physical condition is always the loser. Either you are "too disabled" - you are not beneficial to society and therefore society denies you, or you are "not disabled enough" and society is ready to accept the benefit you bring to the table, but is not ready to support you where you need."
So, saying "low functioning" leads to dismissing a person's abilities, whereas saying "high functioning" dismisses their disabilities. For that reason, try to avoid using any functioning labels. Just say "autist", "autistic", "autism" as well as "high need for support" and "low need for support". If you want to describe a particular person, list specifically their autistic strengths and areas where they have a disability and need support. This is a much more practical approach than using ambiguous labels.
And more about self-diagnosis
We have just made sure that official diagnostics are flawed, to say the least. This means that the role of self-diagnosis, which is sometimes skeptically discussed, is far more important than it might at first seem.
People often ridicule those who have "self-diagnosed via the Internet." While self-diagnosis can be dangerous for certain illnesses, autism is not one of them. As someone who has both self-diagnosed and received an official diagnosis, I believe that if you have thoroughly researched autism, your conclusions may be more reliable than those of a specialist who meets you for the first time and asks only the standard questions found on any online autism test.
Can self-diagnosis be wrong? Absolutely. However, the likelihood of an incorrect self-diagnosis is no greater than that of a specialist arriving at the wrong conclusion — and it is probably even lower if you have devoted sufficient time to studying the information.
From the video You should know this about autism (in Russian):
"Self-diagnosis is OK. Again, going back to the fact that autism is not an illness. Accordingly, you don’t need a doctor’s confirmation to know that you are autistic. That’s as silly as needing a doctor’s confirmation to know you’re gay or lesbian. Or needing a doctor’s confirmation to know if you’re an extrovert or an introvert. It’s just a characteristic of your personality, and it’s up to you to decide whether it applies to you or not. And it’s unshakable if you’ve studied the topic. The main thing is to study it deeply—you don’t have to decide based on a first impression. But if you’re autistic, you will likely study it deeply. And if you don’t want to dive deep into it, if you’re just like, “ahh, well, I could be autistic” and move on, it’s probably not about you. And that’s OK too. Even if you make a mistake—if you first decide you’re autistic and later realize you were wrong—it’s not a big deal. It won’t hurt anyone that you were mistaken. It’s OK to examine yourself, and it’s OK to make mistakes. It happens to everyone. Just know that no one knows you better than you, and only you can decide what kind of person you are, what group of people you belong to, how you feel, and what kind of thinking you have. Only you can understand this. And if you conducted a self-diagnosis, studied the topic carefully, and realized that this is about you, then it is. No one can reproach you for this, and no one can say otherwise. "
The page you are reading right now is a great starting point for a serious dive into this issue. This page contains many quotes I found online over several months after taking an online autism test and decided to compile in one place to make it easier for those who, like me, happen to discover their autism.
From https://www.facebook.com/livedexperiencecounsellor/posts/306976381163733:
"self-diagnosis is NOT seeing something on the internet and diagnosing yourself because you can relate.
self-diagnosis IS knowing you're different and spending countless months and years researching, learning and doubting and exploring both internal and external experiences before even making a decision.
self-diagnosis is NOT reading a Wikipedia page once and deciding you're autistic after relating to a single trait.
self-diagnosis IS connecting with the community and other autistic people, reading and reading about the internal autistic experience rather than just the criteria and connecting the dots from all those years living as an autistic person.
so in that case...
if you are against an autistic person self-diagnosing themselves with autism then it means you believe autistic people need permission from neurotypical people to talk about their own damn lived experience and identity.
you know, the lived experience that they are living every single day? you know, the identity that is THEIR neurology and who they are?
if you only listen when a professional has confirmed it...
that's called ableism."
From https://www.facebook.com/livedexperiencecounsellor/posts/304688588059179:
"Let's quit with the shaming of individuals learning about ADHD or autism from TikTok or IG and self-identifying or self-diagnosing, okay? It doesn't mean it's a phase or a fad or trendy nor does it mean it's actually inaccurate or something everyone does either. Individuals who learn about autism and ADHD from social media are probably getting a more accurate and informed understanding than most professionals. Learning from other autistic individuals and ADHD-ers through social media should be respected. Neurodivergent individuals should be considered the experts and voices for our own experiences."
In any case, the role of self-diagnosis remains very important, if only because it is not easy to find a specialist who diagnoses "autism" in adults. For a long time, autism was thought to be a "childhood disease" (as you can see, both words in this phrase are wrong). Science categorically refused to answer the question "Where do disappear autistic children when they grow up?".
Not a pathology, but an alternative way of being
Those who are completely out of the loop often confuse the concepts of autism and mental illness (such as mental retardation/intellectual disability or schizophrenia), but they are not the same. Autistic people may or may not have mental illness in the same way as non-autistic people. I.e. they are simply different, unrelated dimensions - like weight and height. Nonetheless, the percentage of autistic people with mental retardation is higher than among neurotypical ones. There are many causes of mental retardation, and the impairment of developmental mechanisms in autism is one of them. To be more precise, among autists, there is a greater spread in both directions from the area of average intelligence values. That is, a larger percentage of not only the mentally ill, but also very talented people. Those who support the classification of autism would say that for HFA / Level 1, the rate of mental retardation is 0% by definition, because it's recorded in the diagnostic criteria. Watch this video: I'm NOT CRAZY! (I'm Autistic).
The name "Asperger's syndrome" was dropped because both the words in it are problematic. Firstly, the Austrian pediatrician Hans Asperger was a Nazi. Secondly, the term "syndrome" implies a disease that has a beginning, course and a definite ending, and must (or at least can) be cured. The definition of "syndrome" says it's "a group of symptoms". Now, let's find the definition of "symptom": "a physical or mental feature which is regarded as indicating a condition of disease". So, "syndrome" means that the person is sick. However, autistic people are not sick - they just have different perceptions, thinking, information processing, priorities and values. Different is just different - it doesn't have to mean bad or abnormal. Autism is not like a runny nose or a broken leg - it's an innate condition that accompanies people all their life and is their way of life, nature. You can't take an autist, give them a cure and make them non-autistic. In this case, we are talking about a less common expression of the human genome: an alternative (but not pathological) variation in the structure and function of the brain and nervous system, which simply exists in a certain percentage of people, i.e. is not the norm just numerically.
(You might be wondering - then why is "asperger" in the URL of this page? The answer is simple - when I created it, I was just starting to dive into this topic and didn't know the ins and outs of it yet. Later I wanted to change that address but decided not to, because the backlinks to it already existed.)
Recognition of differences is about moving away from labelling our differences as deficits and instead, recognising the diversity in how we function. According to the neurodiversity paradigm, there is no such thing as normal because normal is a social construct - there is no standard/right or non-standard/wrong mind or brain. If neurotypical people are not the benchmark for functioning, neurodivergent people do not have deficits. This, after all, on the same grounds can work in the opposite direction: if neurodivergent people are the benchmark for functioning, neurotypical people have deficits.
Common and very accurate analogies for autism that I've come across are redheads, left-handers, homosexuals and whites: quantitatively - not the "norm", but qualitatively - not worse than the majority. Rather than viewing the differences as handicaps, experts urge recognizing and respecting neurodiversity as just one of many human variations.
Terms such as "disease" and "disorder" suggest a deviation from the normal state of a particular body. If a disease is cured, the person is still themselves and their personality is unaffected. Autism, on the other hand, is part of the personality. It's a normal condition for the autist, their natural state, so any attempt to "cure", "correct" or "modify" autism in any way is devastating. It's absolutely as ridiculous as medical treatment of neurotypicality, or curing a dog in an attempt to turn it into a kangaroo. Deciding autism is a medical condition eases the minds of those who profit from it. Unfortunately, the multimillion-dollar autism treatment business is booming. Of course, not a single autistic person has yet been "cured" (the only effective method would be a brain and nervous system transplant), and treatment refers to forced "dog training" in order to make an autist more comfortable for the surrounding neurotypical world, which is primarily concerned about its own comfort, hypocritically presenting the "medical services" as a kind attitude and desire to help autistic people. Remember the infamous ABA therapy, which replaces inner motivation with outer motivation, teaches obedience, suppresses attempts to assert one's own interests, and violates the child's personal boundaries: the child must follow the therapist's instructions, ignoring their own needs and emotions.
A professional trainer can make a dog jump on its hind legs, but it will not turn into a kangaroo. ABA therapy tries to "fix" behavior in extreme ways. But there is nothing wrong with the behavior of autistic people, it is simply the judgment of neurotypical people who do not understand us and therefore want us to change according to their demands. The fact that the industry like ABA has managed to convince the world that their abuse is the only way an autistic individual will ever have a future has to be one of the most insidious con jobs of all time. It is very painful to watch parents drag their autistic children to "specialists" who treat these kids like metal parts being filed down, shaping them into forms that are convenient for others. Mothers who share the "successes" of their abused children in Facebook groups are under the influence of societal stigmas and don't realize what they're doing. They love their children and believe they are doing something good, but in reality, they are committing a crime. Leave the children alone, let them be who they are, stop trying to "pull them out of the clutches of autism" (a bizarre phrase I encountered in a comment)! If your child doesn't speak—don't force them, they will speak when the time comes, or they won't, if that's their nature. No psychologist can change their genetics, nor is it necessary—they are part of natural diversity. Yes, life will be harder for them than for the neurotypical majority, but it will be even harder to constantly pretend to be someone else. I know what I'm talking about because I've spent my whole life doing just that.
The neurodiversity paradigm is not against teaching skills. However, it is against teaching skills in a way that suppresses or ignores one's differences, needs, and traits which comes at the cost of their well-being, and against "therapy" that imposes neurotypical goals, standards, and expectations on autistic people that are inapplicable to them.
The diagnosis I officially received was "Autism Spectrum Disorder, Level 1, Without Intellectual Impairment". This contains a contradiction: if "without intellectual impairment", then why "disorder"? That promotes the sadistic idea that there is the only right way to function, the only right way for the mind to be, the only right way to be human.
The full name of the medical document that defines autism in North America is "The Diagnostic and Statistical Manual of Mental Disorders". So, just another way of thinking is officially considered a mental disorder. In 1973, the American Psychiatric Association removed the diagnosis of "homosexuality" from the mentioned Manual which promoted the idea that there is the only right way to love and experience sexual desire. Today, just try to say that LGBT+ is a mental disorder! I am truly happy for the sexual minorities community which was able to achieve the de-pathologizing of homosexuality, and I don't give up hope that the neuro-minorities community will be able to do the same and remove the autism "diagnosis" someday.
Nevertheless, the term "diagnosis" is in wide use even among autistic people - perhaps because it sounds more convincing and "irrevocable" than the vague "assessment". Of course, no one should forget that what is actually meant is not a diagnosis of pathology, but a determination that a person is autistic (made by themselves or by a specialist).
Autism and autistic people need to be de-pathologized. Blind, deaf and many other disabled people get the services and accommodations they need without being labeled as having mental disorders. We don't have to call autism a a disease to acknowledge that autistic people are disabled and can need help.
From Why requiring Autistic people to be diagnosed is a betrayal of the Neurodiversity movement:
"Being Autistic is an identity based on a specific neurology. It is not inherently good or bad. There is nothing to be fixed or cured, so why force people to acquire a diagnosis? Should we not have accepted by now, in the 21st century, that neurodiversity is a natural phenomenon, and not a collection ailments requiring intervention."
However, some changes for the better are beginning to appear. Read the article Autism Treatment Shifts Away from ‘Fixing’ the Condition.
Somebody could ask: "If it's 'only' an identity, why should autistics get any accommodations or help?" Because the world, adapted for people with another identity, has forcibly made us need support. If there were as many autistic people as there are neurotypicals, the world would be a completely different, and autistic people wouldn't need any special help.
HOW TO TALK ABOUT AUTISM
Language matters! Medical terminology pathologises the characteristics and experiences of autistic people as deficient and abnormal, and implies that autism is negative and possibly preventable or remediable. Your choice of words has the power to make an autistic person feel like they're damaged and need medical therapy (which is a popular myth) – or that their neurodivergence makes them perfect the way they are.
| PATHOLOGISING, STIGMATISING LANGUAGE | NEURO-AFFIRMING, DESTIGMATISING LANGAUAGE |
| Autism spectrum disorder (ASD), Asperger's syndrome | Autism, autism spectrum |
| Cure, treatment, correction, fixing, intervention | Specific support or service |
| Symptoms, impairments | Manifestations, traits, characteristics, experiences |
| To suffer from autism | To be autist(ic) |
| At risk of autism | May be autistic, likelihood of being autistic |
| Normal | Non-autistic, neurotypical, allistic |
| Co-morbidity | Co-occurring |
| Person with autism, person with Asperger, aspie | Autist, autistic person |
| High/low functioning, mild/moderate/severe | Specific support needs |
| Restricted interests, obsessions | Specialised, focuses, intense interests |
There is an illusion that there are more and more autistic people, but that is only because autism diagnoses have become more common in recent decades (starting in the 1940s and especially since the 1980s). In the age of the Internet, lots of people are realising that they are autistic through posts by other autists on social media. Many of these people manage to get a formal diagnosis, which they never would have gotten otherwise. Also, the diagnostic criteria has changed to include more different presentations of autism.
From Is Autism An "Epidemic" Or Are We Just Noticing More People Who Have It?:
"The disorder [I would rather use the word "feature"] hasn't actually become much more common — we've just developed better and more accurate ways of looking for it. Another strong argument against the specter of an emergent autism epidemic is that prevalence of the disorder is notably similar from country to country and between generations. Because of greater awareness of autism and the flexibility of the diagnostic tools used, we've recently been diagnosing people with autism who previously would have received other diagnoses or gone unidentified."
As you see, autism is not a recent phenomenon. Both the variations have existed in parallel for centuries and millennia. Despite this, it is not neurotypicality that is considered a disorder worthy of curing, but autism, simply because it is more convenient for the majority. What is this if not the idea of neurotypical supremacism?
From Creating Autistic Suffering: Neuronormativity in mental health treatment:
"Psychological therapies start from the position that there is one correct way of experiencing the world, this in itself is neuronormativity. It assumes that the neurotypical experience is the standard that all should be trying to achieve. So when the Autistic patient enters the room, the therapist will first attempt to understand the Autistic person through the lens of neuronormative thinking, and then try to force the Autistic mind into a neurotypical box, and in turn apply their understanding of neurotypical mental health, onto a neurodivergent mind. This is a fundamental problem because Autistics simply do not think and experience the world in the same way as a neurotypical.
This medical neuroprovincialism creates gaslighting. Applying neuronormative standards to Autistic people regarding emotional and mental health creates further suffering by further traumatising us, creating more masking, and in turn lowering our ability to cope and manage our mental wellbeing. Thus, we have the vicious cycle of patient-blame perpetuating itself around the premise that Autistics have an incorrect experience of the world, and that cycle makes our mental health worse more often than it improves it.
In truth, nobody experiences the colour green in the same way, at least not that can be proven. Experience of emotion is entirely subjective, two people rarely even look the same, let alone having an identical experience of their inner worlds. Solipsism [the philosophical idea that only one's mind is sure to exist - your own existence is the only thing that is real or that can be known, and the self can be aware of nothing but its own experiences] tells us that we can not ever experience the world through another's eyes or mind, yet here are the neurotypical masses telling us what we should or shouldn't be feeling based on their own prejudiced standards of what they consider "normal". Labelling us disordered when we can not fit into that restrictive worldview. To add insult to injury, they're not even interested in asking us about our experience. They just push us through therapies..."
There are autistic and neurotypical people in the world, and the neurotypical majority has decided for their own convenience that autism is a disorder. This is as absurd as if the autistic minority had declared neurotypicality a disease. The topic is covered in an ironic article All About Neurotypicalism: A New Pathologised Condition, The Neurotypical Wife FB page and in the following pictures (ironic as well, of course):
Introduction to ableism
The world was created by neurotypicals for neurotypicals and is tailored to the majority. That neurotypical world acts on the principle "if I can do it, then you can too", although it is not so from the physiology's perspective. When an autistic person is treated like everyone else, that sounds great, doesn’t it? Isn’t that what all fighters for justice and equality strive for? Unfortunately, that can be a serious problem too - autists are faced with demands that are not applicable to them in principle.
Equality is not when when everyone is treated in the same way - it's when everyone is treated with the same regard for their particularities and special needs. For example, people in wheelchairs are not treated like everyone else - ramps and special restroom are built for them. Autists have special needs in the same manner. When features of neurotypicals are taken into account, while features of autists are ignored, then this is discrimination.
I’m talking about study and work environments, where everything is designed for neurotypicals. It would be helpful if others considered the specifics of autism, but who is aware of it? Even autistic people themselves often don’t understand who they are, so what can we expect from others? As a result, many teachers and bosses bully disabled people—not because those teachers and bosses are evil, but unintentionally - because those teachers and bosses have no idea what they’re doing.
From Instagram:
"I am absolutely exhausted from this. I am a teacher and there is a very specific way teachers are 'supposed' to act. It's absolutely soul crushing. Not to mention having to combat all the ableism that goes on when teachers are talking about what kids 'can't' do and what they're going to 'have to learn'. Autism is not a shell for allistic [non-autistic] people to crack open or a disorder to fix. It's a disability, yes. And some people need support to complete activities of daily living. Many aspects of autism are disabling because of intense ableism. Society abuses and traumatizes autistics every day by forcing us to deny ourselves."
Judging by the laudatory annual performance reviews from my managers (as well as the fact that I have never been fired for poor performance in my two-decades career), I do just fine with my professional duties, but sometimes at the cost of invisible super-efforts, struggling and even suffering. This happens a lot when I do work that does not directly belong to my profession of a software developer - for example, investigate bugs of other programmers (especially if those guys weren't very good at the art of programming) or receive vague instructions directly from business users or analysts (instead of developing according to a clearly formulated detailed design specification). Often times, I go to work as if I'm going to war, and wage a real fight to meet performance expectations - my job drains me. At the end of the working day, I am often completely exhausted. Therefore, it is difficult for me to be on the side of those who argue that autism is not a disability. However, it must be said that it's not always difficult for me at work: if I have a well-articulated technical task (even if it is very complex), I adore my job and time flies by!
From How I Came Out About My Disability:
"High functioning autism isn't an empty label just because it includes the words “high functioning.” It means I might have the ability to function under “neurotypical” demands — but only for a while. It means that not only do I need to rest frequently, but I also limit how I engage with people and I am mindful of where I am to reduce stress and overstimulation."
From Help autists who live near you! (in Russian):
"If you meet people who seem strange to you and not like most of your friends, remember that when communicating with you, they experience a much greater "culture shock" than people experience when looking at them, because they live in a world where their way of thinking and their natural way of behavior is not the norm, they live among people who in their mind are similar to aliens, whose behavior seems strange to them. It is quite possible that in the past they had to endure the bullying of these people. Before judging another person for strange behavior, imagine how you would feel if you had to pretend and behave in an unusual way all your life."
Imagine a society where all the people were deaf. It would probably be a very noisy world. Houses without noise insulation, cars without mufflers, fridge and other home appliances rumble like tractors, neighbors make repairs until midnight, people around are constantly making various sounds. And if some people suddenly, in a strange way, developed the ability to hear (due to a genetic mutation), then they would become disabled, because their experience would be incomprehensible to most people, and the environment would not be suitable (they would grow from birth in terrible conditions and will not be able to study normally at school, which is why they would be considered inferior, and doctors would advise to pierce their eardrums to make them normal). But this does not mean that hearing is a disease.
If you are a neurotypical person, then imagine yourself in a world in which everyone is autistic. Your sociability seems to others an alarming sign of your mental illness, the habit of looking into the eyes of your interlocutor is considered defiant behavior, the volume of your voice seems inadequate. You can neither understand what people want from you, nor convey your needs. When you create professional documents and conduct business correspondence, you are told that it is absolutely unacceptable to write so much, undefined and vague (nobody understands what you are trying to say), and that you should write briefly, precisely and concretely (but it's a huge problem for you!). It is hardly possible to maintain mental health in such an environment.
Now you understand that there is no contradiction between the fact that autism is not a disease and the fact that autistic people need support in the context of the existing society.
From A letter from the autistic colleague you didn't know you had:
"Not all disability is visible
I don't perceive the world the same as all other autistic people though - we really are all different. There's a range of characteristics of autism that we have to varying extents. For me, the main things are that I find being around people tiring, loud noises or background noise overwhelming and impossible to ignore, and a very deeply ingrained sense that I need to hide who and what I am. That last one is what comes from spending my whole life, until I was diagnosed three years ago, feeling that the ways I was different were my fault. I came to believe that if only I tried harder, if only I was less lazy, if only I was less selfish, I could be normal. But I can't. What can happen is that autistic people experience such trauma from others' reactions to their autism that they learn to hide it. That's what happened to me - but it's not any sort of "cure". It makes the situation worse, because the person learns that not to hide who they are is to be rejected and ostracised."
Psychological problems—bad mood, anxiety, depression—are more common among autistic people (they have a rate of depression nearly 4 times higher than the general population). For example, typical social anxiety includes fear of rejection or judgment in social situations. Autistic people may also be anxious about not having access to their special interests or about disruptions in routine. These problems can be caused both directly by autism (i.e., associated with physiological characteristics) and by the difficulties that autistic people experience living in a world that is not adapted for them, especially if they constantly put on the mask of a neurotypical in order to "be like everyone else," and also spend a lot of effort continuously translating external signals of the world from neurotypical to autistic language. Most likely, these two sources of problems overlap.
In one article, I found a very correct definition: "Anxiety often takes on unusual forms in people with autism, turning any uncertainty into constant fear". Autistic people tend to have repetitive behaviors and obsessions with something. Now imagine that such a person is focused on negative thoughts! Of course, anybody can become anxious sometimes, but autists approach this "professionally," making disturbing thoughts their "special interest." This topic is well covered in the article What is anger rumination and how does it affect individuals with ASD.
I got rid of my general anxiety with zinc and caffeine removal, i.e. my problem was at the biological level. I do not know whether it is associated with autism - it may well be. BTW, getting rid of obstructive sleep apnea has also greatly contributed to the reduction of psychological problems. Note that there is a link between autism and obstructive sleep apnea.
Be sure to read the articles Autistic burnout, explained and ‘You don't look autistic’: The reality of high-functioning autism!
Autists are more likely to die prematurely. I think that the reasons are both in psychology ("software") ("all diseases are from the nerves") and in different physiology ("hardware"). Note that autistic people are much more likely to commit suicide:
"The researchers found that people with autism died 16 years earlier at an average age of 54. Adults with the condition and learning disabilities died more than 30 years earlier than people without autism at an average age of 39.5 years. Adults with autism and without a learning disability died on average 12 years earlier, at 58." (The source)
Autism (Part 1) • Autism (Part 2) • Autism and job • ADHD • Monotropism • Questions to AI