Did you notice anything unusual in the behaviour of yourself or loved ones? Read on!
The wrong planet syndrome
I was always feeling that I was different from those around me. On the one hand, for me some things were difficult that were easy for others. For example, openness in communication and some subjects at school (as well as some elements of my work, with which, according to the annual reviews from my managers, I do well, but sometimes at the cost of invisible super-efforts). On the other hand, I felt that my actions were somehow more logical and orderly compared to some others (I especially often noticed this in my programming work, reading code written by other developers).
I always suspected that something was wrong with me, but did not know what exactly. Recently, however, "the puzzle has taken shape", and the situation has become clear. On the eve of my 48th birthday, I unexpectedly learned that I was not the only one who was sent to this planet it's not clear from where, but there are millions of us (people with a genetically different brain structure). I saw the numbers of the diagnosed people from 1% to 2.63% (one person out of 38), but judging by my friends (based on what I see, although I may be wrong), the real number is clearly higher (and among children, it's just an epidemic!) - many are not only undiagnosed, but do not even suspect that they have something that has a name (as I did until recently).
It was purely by chance that I passed an online AQ test (AQ stands for Autism Quotient, not to be confused with IQ - Intelligence Quotient!) - be sure to take it
FYI: autism is a developmental disorder characterized by difficulties with social interaction and communication, and by restricted interests and repetitive behavior. Autism is caused by abnormalities in brain structure or function - by how neurons and their synapses connect and organize, which affects information processing. Similar conditions with milder signs and symptoms are referred to as autism spectrum disorders.
The scale of the test is 0 to 50 and consists of a few segments. The following information is taken from the video Everything You Need To Know About The Online AQ Test:
• 0-10 - absolutely no autistic tendencies.
• 11 to 21 - the average for most of the population.
• 22 to 25 - a higher than average number of autistic traits.
• 26 to 31 - a borderline score. 86% of people with this score will be correctly classified as having Asperger's syndrome.
• 32 to 50 - very high likelihood of being autistic. 80% of the adults with high functioning autism and only 2% of the non-autistic control group scored 32 or higher. 43% of autistics scored above 38. However, none of the 174 not-autistic participants scored above 38.
So, a high score rather reliably indicates that you are on the spectrum, but a low score does not guarantee that there is no autism, i.e. this is NOT an autism absence test.
I got 37. Of course, the test is very approximate, although it will most likely coincide with the official assessment if it is made. Please watch the video Self-Diagnosis Of Autism: Is it valid? It can be summarized in one word: valid!
Of course, this test is only the first step in self-discovering. If you got a high score, then the second step is to find information on the Internet and comparing you with yourself. Autists are known for collecting information about the subject of their interest a lot and with enthusiasm, "digging" the question in depth. In this case, that interest is autism itself, ha ha! It is possible that in the future you will decide to take the third step - official assessment.
The situation is clearing up
As far as I understand from the test and from many articles and videos, I have a mild or a moderate form of Asperger's syndrome. 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."
I completely share what the other person expressed in the 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."
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 person [with a typical brain - as opposed to autistic people]. I was a perfectly good autistic person."
I want to make an important clarification on my own: I'm happy that I understood what was the matter with me all these decades, not that I have autism.
BTW, the name "Asperger's syndrome" is outdated and officially withdrawn from use since "syndrome" means a disease that has a beginning, course and a definite ending, and must (or at least can) be cured, and not an innate condition that accompanies a person all his life and is his way of life, nature. In this case, we are talking about a slightly different version of the brain structure (different, but not pathological), which simply exists in a certain percentage of people, i.e. is not the norm just numerically. By the way, for the same reason, the word "diagnosis" is also inappropriate, although it is in use; the word "assessment" reflects the essence much better. Common (and very accurate) analogies for autism that I've come across are redheads, left-handers and whites: quantitatively - not the norm, but qualitatively - not something bad.
It is not easy...
However, there is still "something bad" in autism - it causes problems from childhood. Mainly because the world is tailored to the neurotypical majority which often refers to people with autism as strange, unsociable (although from the point of view of an autistic person that world itself can look strange, and sometimes unnecessarily intrusive). Even if the autistic people are not offended, many of them still feel that they are treated differently.
"If you meet a person who seems strange to you and not like most of your friends, remember that when communicating with you, he experiences a much greater "culture shock" than people experience when looking at him, because he lives in a world where his way of thinking and his natural way of behavior is not the norm, he lives among people who in his mind are similar to aliens, whose behavior seems strange and incomprehensible to him. It is quite possible that in the past he 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."
Psychological problems (bad mood, anxiety, depression, etc.) are more common among autistic people. They can be caused both directly by autism (i.e., associated with physiological characteristics), and with the difficulties that autistic people experience living in a world that is not adapted for them (especially if they constantly cling to the mask of a neurotypical in order to "be like everyone else" and meet the society's expectations, and also spend a lot of effort to continuously translate 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". 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.
People with autism are more likely 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." (source)
Now you will learn a new word!
By the way, the
"The neurodiversity paradigm is an alternative way of thinking about autism. It describes autism as a part of the range of natural variation in human neurological development. At its very simplest, autism is a different way of thinking. According to the neurodiversity paradigm, there are no right or wrong brains. All forms of neurological development are equally valid and equally valuable. And regardless of what type of brain you've got, all people are entitled to full and equal human rights and to be treated with dignity and respect."
Now let's go to the cinema
If you want more details, watch these videos:
On this guy's channel, you will find a lot of interesting things if you suspect autism in yourself or your family:
Just a fragment of the previous video transcript:
"When you've spent your whole life not being believed, to finally find people and a community that do believe you, and do validate you, and do say crazy things like, "I understand." It's absolutely life-changing to have that experience that you previously thought no one else had, and no one else could possibly understand, to have that validated, and to find out other people have had this experience as well. That is why diagnosing yourself as being autistic can be an incredibly powerful moment in a person's life to realize all of those things."
Autistic people think not wrong but differently
Those who are absolutely out of the loop often confuse the concepts of "autism" and "mental retardation/intellectual disability" (I confess - I myself was confusing them too), but these are different things. Intellectual disability is when the IQ is 70 or below. Autistic people may or may not have mental retardation in the same way as non-autistic people. I.e. these are just different dimensions - like age and height. Autistic people are not sick - they just have different perceptions, different thinking, different information processing, different priorities and different values. Watch this video: I'm NOT CRAZY! (I'm Autistic).
Autism Spectrum Disorder [or Disfunction] (ASD) is a very general and vague name for a range of social communication phenomena ("autism traits") that can occur in different people in different combinations and with varying severity, so autistic people are all different (in the same way as neurotypicals are not similar to each other). Autism is divided into low-functioning and high-functioning (they are different and sometimes quite distant from each other, therefore the use of the same term "autism" for both of them is subject to fair criticism).
• Low-functioning autists have enormous difficulties in communicating with the outside world and arranging life, and usually do not speak or speak with difficulty and very poorly (although, sometimes, they write books). They need the physical support of other people. Because my condition has nothing to do with low functioning autism, it is not the subject of this page.
• High-functioning autists (including Asperger's syndrome) are quite well adapted to life (functioning) in society, there is no question of any developmental delay or disability. Although their life is fraught with difficulties, they can exist without support.
There is also a classification according to which Asperger's is not autism at all. It uses the word "autism" only for low-functioning ("classic") autism. Another classification distinguishes between low- and high-functioning autism on the one hand, and Asperger's syndrome on the other (watch Autism and Aspergers: 5 intriguing differences). Another video explains that dividing autism into low- and high-functioning is meaningless since autism scale is not one-dimensional (higher / lower), but multidimensional (higher / lower separately for each of the many traits), which is why a person can be low-functioning according to some criteria (for example, not to speak), and high-functioning according to other traits. I agree with this very opinion, but still I am not an expert and will stick to the most commonly-accepted classification, according to which Asperger's is a type of autism in the highly functional part of the spectrum.
High-functioning autists have an average IQ at the same level or higher than neurotypicals. Many articles even say that people with high-functioning autism are intellectually above average, for example:
• ...autism is a "disorder of high intelligence" as a number of recent studies have found a positive genetic correlation between autism genes and measures of mental ability. This research indicates that alleles for autism overlap broadly with alleles for high intelligence. Evidence indicates that autism and high IQ share a diverse set of convergent correlates
• Autism IS linked to higher intelligence: People with genes related to the condition scored better in mental ability tests
• The Benefits Of Employing People With Autism
• What Genius and Autism Have in Common
I don't know if this is really so (you can find a "proof" of anything in the Internet if you wish), but in any case, it should be obvious to the readers that "autism" (at least the highly functioning one, which is discussed in this page) and "mental retardation" have nothing in common: thinking differently does not mean thinking wrong. By the way, the Israeli army recruits autistic people to the analytical department of the military intelligence service. And it was the autistic people 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", established Microsoft and Tesla (needless to say, that mister Nikola was an aspie himself, ha-ha!). I am writing all this not to the fact that autism is cool (it's not cool at all - autism comes with a lot of problems and I wish I didn't have it), but to the fact that if you find it in yourself or your child or spouse, do not rush to fall into horror, life is not ended - everything is not so bad, although it is undoubtedly fraught with problems (which you already knew about, but now you are also armed with additional information, because you know what phenomenon lies behind them). And if you dig well, then you can even find advantages in autism. I find some of the features, listed in the next video, in myself, but not all:
Reading facial language
Above I wrote: judging by my friends (based on what I see, although I may be wrong), the real number is clearly higher. Probably, you thought: "How did you know? Autism is not written on their faces!" Well, I don't even know how to describe it... Apparently, I read some barely noticeable signs, and recognize some special way of speaking. So, it is written on their faces! :-). Have you noticed how Elon Musk and Freddie Mercury behave in the video interviews? They speak with a neutral ("stone-like") "robot face", which most of the time does not express any emotions or expresses them weakly, although, according to the content of what they say is very emotional (by the way, this is the source of a common misconception that people with autism have no emotion and are incapable of empathy). They rarely smile and laugh. Sometimes they slow down a bit, stumble, look away from the camera to find words, gesticulate or perform other body movements (this is called "stimming"). One may get the impression that the speakers are not sure in what they say, which is absolutely wrong (they certainly have no problems with this!) or pretend to be "modest guys" (which is also not true - they really are as we see them). However, autistic people do not always strike the eye. I personally know a couple of aspies, in whom nothing is noticeable during a conversation (in person or on camera). By the way, now I understand why I refused video interviews, which I was asked several times to do about intermittent fasting - I would look very unprofessional, not to say ridiculous. And I'm not a video blogger who talks about autism (so viewers are aware of unusual behavior), and certainly not a genius like Elon and Freddie, who don't care what they look like. So if you have stage or video camera anxiety, it's your neurobiology!
A related topic is introverts
I once wrote on a forum in a thread dedicated to introverts:
"What struck me most was that a person's introversion or extroversion depends on physiology - the pathways of blood flow, the types of neurotransmitters involved and the means of transmitting information through them. That means, psychology depends on anatomy, and that, in turn, on genetics. And how a person was brought up in childhood does not matter in this regard, or it has a minimal effect (otherwise there was an opinion that people withdraw into themselves because of some kind of offense inflicted on them at an early age)."
It seems that I'm starting to rethink that forum topic... I understand that neurotypical people can also be introverts, but if you replace "introvert" with "autistic" in the forum tread, then everything fits together perfectly! Here are some quotes from the internet:
"Autism is the ultimate, extreme loneliness. The autist deliberately isolates himself from the outside world, avoids interacting with people."
"An extreme form of introversion is autism."
"Introverts prefer to be alone for a while, autists have gone even deeper into themselves. In America, being an introvert is considered a disadvantage. Employers and culture in general are extroverted. Extroverts integrate easily."
"Introverts and autists (Asperger's) have similarities. This is self-absorption, isolation, strangeness. Objectively, there is no difference. But it is there. If an introvert can easily interact with the world around him, achieve something, then it will be more difficult for an autistic person, he seems to be detached from this world."
Show your certificate!
Although it is more than obvious to me that I have Asperger's, I nevertheless asked the family doctor for a referral for establishing diagnosis officially (however, I did not understand for what; on the other hand, why not if the government pays for it?). The family doctor asked a bunch of questions to make sure that there were good reasons (I could just have fun out of boredom) and said that I would contacted by the organization named CAMH, which carries out autism diagnostics in Toronto.
So I'm sitting waiting for my diagnosis, and in order not to waste time, I made a detailed description of my symptoms to show the specialist who will assess me. At first the list was short, but then it grew so much that now I'm not sure that a specialist will have time to read it. But not to waste the good - I am posting it here.
My symptoms in detail
• I am so concentrated on details that sometimes don't realize the whole, "big" picture. I "see the trees but don't see the forest". When I get a technical task, I become a perfectionist in implementing the details - my program code is clear and easy to read, but many times it's hard for me to understand why I was told to do that, and what impact it will have on the business. I am a performer by nature, not a manager - I could never lead people and give them directions.
• My analytical skills are very low. I have difficulty with analyzing information and drawing conclusions from what I hear. I cannot recognize (extract) and summarize important details from the general stream, highlight the main and the secondary. Very often it seems to me that others see and understand more than I do. As a result, I tend to take other people's opinions on faith rather than subject them to critical analysis.
• I am not able to think abstractly. My co-workers, when discussing the high-level design concerns, are looking superhumans to me - how do they do that? How can they anticipate where certain actions will lead? I am absolutely stuck when I am asked open questions in business meetings if the questions require abstract thinking. I feel like a rabbit hypnotized by a python and in a panic I seek an answer. If it would be an email I would have time to find some information for the answer. In school, I had difficulty with subjects that dealt with abstraction - for example, mathematics. The situation with physics and chemistry was curious: the theoretical part was clear to me and very interesting (I even read additional popular literature purely for myself), but when it came to solving problems, I was absolutely stuck.
• I need short and precise instructions what to do, and extremely clear, definite, logical and straightforward description of the end result. Sometimes I get long and confusing technical design documents, and it takes long time to extract meaning from them - it's a pain! However, I see my neurotypical co-workers read and understand them easily. Many times, after I had great difficulty decrypting a document, I wanted to ask the author: "Why did you write 3 pages of amorphous blah-blah-blah instead of 3 lines which would convey absolutely the same idea without forcing me to spend an hour in trying to guess what you wanted to say and understand your foggy clues? Why do you MEAN something instead of simply saying that directly?". The problem is that people often write in some kind of context that is spinning in their head at the time of writing (after all, they thought before writing). But for some reason they do not understand that I am not a telepathic and cannot know what they are thinking. When I am creating business letters and documents, I am writing only what is needed, no "water", and only in plain text, without clues. People told me a few times that it's pleasure to read my code, emails and documents since they are brief and to the point.
• I feel very comfortable in a familiar, predictable situation. But if something goes outside the box, then it's a very difficult challenge for me. Тhis is not only exhausting anxiety and expectation of bad things, but also the need to make decisions, which is a big problem. It is difficult for me to make decisions, and when I have to, I am often not sure that they are correct. I read that this is a disorder called decidophobia. Nevertheless, I easily make technical decisions in my professional field, where I fully rely on my many years' experience.
Comment for those reading this page:
I found in one video a phrase that characterizes me very well: "We are not suitable for jobs where we need to make quick decisions in non-standard situations, especially if these situations are related to communication with people, interacting with them directly".
• I can build complicated system's modules from scratch if I have clear technical task, but trying to understand programs written by other developers is pain for me. Almost always I think that I would program in a different way.
• I often find it difficult to process large amounts of information. Sometimes, at work, I feel that I am in the midst of an information explosion and I want to escape to nature, look at the lake and listen to the sound of the wind. The flow of information in large quantities can lead to the situation when I "burn out" and "turn off" for a while to rest and then return to work with renewed vigor.
• I am resistant to change and have trouble moving from one activity to another - I get very upset. When I am doing something, I am very focused on the task at hand, so it's very hard and painful to be interrupted and switch to something else - I can focus only on one thing at a time. Multitasking, I hate you! If I am working on the current assignment and suddenly get a production ticket (which has the highest priority), it's a catastrophe!
• I always pay attention when other people are acting illogically. For example, when driving, or when replying my emails. If I find an imperfect technical solution in code, written by other developers, I always pay attention on that. Many times that makes me angry - why did they write simple things in so complicated ways? I don't know why people, who do things which don't make sense (and write a lot of words which are unneeded!), are called "normal", and I am "special".
• I have bad memory. Remembering a phone number is an unrealistic thing in my life, even for a moment (to say nothing of long-term memory). Sometimes, I can't remember words even in my native language (to say nothing of English!). When speaking, I am trying to recall them, but unsuccessfully, so I explain what I want to say using other words.
• I process information by ear more slowly and more difficult than written information. If people ask me to do a few things, I always request instructions in writing, if possible.
• I hate phone calls. When my phone is ringing, I wish it's a spammer, so I can cut immediately! I am convinced, that many neurotypical people just love to speak. They could write an email or an SMS (so I can answer meaningfully, with no rush - that would improve the quality of my answer), but they call, call, call like crazy. Why are they so sure that it's good timing for me? Maybe, I am busy right now!
• Dealing with other people (the outside world) is difficult, stressful and confusing, and I often have significant anxiety about having to do that. I am over-analyzing situations before and after trying to figure out what the best thing to say is (was). When socializing, I constantly make sure I am not going to say a wrong thing. At business meetings, I often prefer to remain silent because I am not sure that my words will be treated with respect, although there is no reason for this worrying.
• I have waves of high and low productivity. I can work like a horse, and then suddenly feel crushing - my batteries are empty.
• It is extremely difficult for me to work under pressure or deadlines. When I know that I have plenty of time, I can write programs which are pieces of art. Do you want to insert me into panic and ruin everything? Tell me "it must be ready next Wednesday".
• I hate "small talk", especially when people ask me "How are you?" and are waiting for an answer. I know that the interlocutor does not care how I am doing! Of course, I give a standard answer the neurotypical society is expecting, but everything is boiling inside me - why do I have to give a stupid answer to a stupid question? If the person wans to ask me something, why doesn't he ask immediately, without speaking about nothing before that? Sometimes I answer with a joke - just to hide the stupidity of the situation. "How are you?" is an absolutely normal question if, for example, somebody knows that I was sick and asking if I am better now. There is some context meant by the person - my sickness. But I was not sick! What do they mean? "How" should I be according to their expectation? Why not to just say "Hi"? Also, I hate when people wish me happy birthday. These words are useless and meaningless to the same extent as "How are you?". I wish people all the best always, on all days, not just on their birthday. That's also the reason why I hate to wish happy birthday to others.
• Sometimes I am stuck if I must perform a required action. When someone demands something, I take it as aggression, an invasion of my personal space. I want to respond to aggression with aggression. For example, when my wife is telling me to fill an online form or collect documents for something important. I understand, that it's not a big deal, and that I am looking stupid stubborn without any reason, but everything in me is resisting that, I am standing still and not able to do what is required of me. That is the second reason why the production tickets are a catastrophe - they are A MUST! Sometimes I spend 10-15 minutes at my work walking around with no ability to do anything. Of course, everyone needs rest, but this is something different - even if I would be paid a million dollar, that would not force me to do things, which are, in fact, easy to do. After a while, I calm down and start doing the assignment since I have no choice. This problem exists not only when others tell me to do something, but also when I myself realize that I must do something. Sometimes it's hard to convince myself to drive for a supermarket for grocery shopping (it's not just a required action - it's also contact with people!).
Comment for those reading this page:
I recently learned that this is an autistic trait called PDA (Pathological Demand Avoidance). In this video I came across the following definition of PDA: "Not being able to do certain things at certain times. Resisting and avoiding the ordinary demands of life". Of course, something similar can be observed in any person, but in Pathological Demand Avoidance the key word is "Pathological". This is a medical condition not related to laziness. PDA is a standalone diagnosis on the autism spectrum that is usually observed in combination with others (eg, Asperger's syndrome). This knowledge is of great importance to me! Now if I feel like I can't bring myself to work and I am taking a forced break, then I DON'T FEEL GUILT ANYMORE: this is my physiology, and I cannot do anything about it. I realized before that I would over-compensate for this break in work (later, when I would have inspiration, I would work "for three"), but now I am absolutely calm in such moments of sensory overload (which in itself contributes to better rest).
• If I like something or it's interesting to me, then the picture is opposite - I do that with pleasure, and can spend long time collecting information or working with passion. Before buying an electronic device, I do a serious research in the Internet. I created a site dedicated to my health problems which contains all the information, collected by me, and describes how I solved the issues - some readers even asked if I am a health care professional, ha-ha! At school, I had good grades in subjects in which I showed interest and poor grades in subjects that I did not like. The teachers told my parents: "Your son is smart and talented, but very lazy!" Alas, the teachers did not understand that it was not laziness, but a physical impossibility to force myself to do what was needed or other problems associated with autism.
• I know that many people with autism cannot stand loud noises and bright lights. I cannot say that I "cannot stand" them, but I observe some increased sensitivity. When we were choosing a house, my wife really wanted the rooms to be bright, but I prefer darker. On bright sunny days it is difficult for me without sunglasses. Active noise canceling headphones are my best friends. I wore them in the office to make it easier to focus on work (before I started working from home because of covid). They also saved me the rare times I took the subway (I don't understand how other passengers put up with such noise instead of buying noise-canceling headphones!).
However, there are many typical autism signs that I don't have. I have absolutely no problem to look people in the eyes, and remember faces well. I do not speak in a monotonous voice, during a conversation my face expresses emotions (although, probably less noticeable), I smile and laugh, I make others laugh and understand jokes, sarcasm and social cues. I perfectly "read" intonation and emotions, and understand body language. I do not ignore the feelings of other people, I am always polite to them and do not directly say everything I think. - I don't want to hurt them (and make them hate me for saying the truth). I have no problem with loud sound, bright light, food texture, smells and touch.