Neuro-diversity: What you need to know about autism
Every year more and more adults will find out about her belonging to the autism spectrum, for example, singer Susan Boyle was diagnosed only in 48 years. While vaccine opponents are sounding the alarm about the "autism epidemic" allegedly provoked by vaccines, people with autism (or autistic people, as many of them choose to call themselves) are gradually becoming visible due to improved health care and new research. The spreading American statistics says that one of the 68 children has an autism spectrum disorder, two years before this number was talking about one out of 88, and at the beginning of the zero - about one out of 150 children.
Twenty years ago, autism in the United States was diagnosed only in children whose cognitive abilities were lower than those of their peers (this was often determined by tests). In Russia, it is still confused with deafness, cerebral palsy, alalia (absent or poorly developed expressive speech) and other features of development. According to statistics from the Ministry of Health, autism is observed in 1% of Russian children (the figure is generally accepted in the world community), but in fact, 9 out of 10 may not be aware of the diagnosis. Autism is a very “young” diagnosis, which is why so many rumors and sometimes fantastic hypotheses circulate around it.
Spectrum
Until the mid-twentieth century, autism did not have a name; only in the 40s did Leo Kanner in the USA and Hans Asperger in Austria describe in detail people with this peculiarity. Their research was continued by Lorna Wing - in the 70s-80s she became the author of the concept of Asperger's Syndrome, drew attention to people with highly functional autism and came up with a “spectrum”. True, the official classification of the autism spectrum disorder (abbreviated as PAC) was accepted only in 2013. Prior to this, atypical autism, Asperger syndrome and, for example, childhood autism were held as different diagnoses, although, in fact, this is the same disorder with a different degree of intensity.
“If you describe autism in a very simplistic way, this is a state in which a person’s social skills are noticeably inferior to his intellectual abilities. For example, a child of ten years old, whose intellect is absolutely not inferior or exceeds the average for his age, and social skills remain at a six-year-old, "says child psychiatrist Elisha Osin. The disorders of the autistic spectrum are manifested in two areas: in communication and the features of activity and behavior.
Communication
Since childhood, I have read much more than I have said. There were and still are problems with the perception of information at the hearing, and the high timbre of speech makes it seem like it knocks all the information out of me. I do not understand the emotional coloring of speech, in conversations I pay attention to completely different things than my interlocutor. I am still puzzled by some nonsense, such as why people say goodbye when they leave the office, although they see each other for the first time and should, on the contrary, say hello. Fortunately, I work remotely, and therefore all communication with colleagues occurs in chat rooms - I perceive the text much better.
Maria has a highly functional disorder of the autism spectrum (in the old fashion it is called Asperger's syndrome), so her difficulties in communicating with neurotypes (people corresponding to the relative mental norm) may not be so obvious. A person with high functional autism can speak easily and fluently, but it is not always necessary to listen carefully to the interlocutor or to feel badly relevant topics and statements, explains Elisha Osin. Sarcasm, jokes, social distance, secular tar-talk, gestures, the ability to look into the eyes - all this can cause difficulties.
At the same time, each person with ASD is individual: he can either not completely gesticulate, or be too zealous, not look at the face of the interlocutor at all, or not look away for a second. “For example, a person with autism may ask the waiter for water, embracing and telling him this in his ear,” Tatiana Morozova, a clinical psychologist and expert from the Naked Heart Foundation, cites the example. A person with autism may have a harder time expressing his desires and feelings, asking for something, or defending his own boundaries. That is why many children with autism often “turn into hysterics”: the point is not that they are badly brought up, but that they cannot formulate their desires calmly.
This is usually called a communicative board - there are low-tech laminated tablets with pictures and letters, but ideally you should use a tablet with a special program. “The tablet works for a person with autism as a phrase book in the world of neurotypical people. Once in an unfamiliar country, we will obviously speak the local language faster if we use hints,” explains Tatiana Morozova.
Many people think that people with autism are empathic and may therefore be aggressive, but this is not true. Elisha Osin proposes to define empathy as an opportunity to feel what the other feels - not as an ability, but as another channel for receiving information about the world: “Scientists agree that people from the spectrum can feel what the other is going through - for example, understand that a person who has just burned himself is in pain, but there may be a problem with an appropriate response. " Children with autism often pay attention to crying playmates, but instead of showing sympathy, they can start laughing, he says. “A crying child is clearly important to a child with autism, but he doesn’t know how to react properly,” says Osin. However, he also notes that some adults from the spectrum honestly admit to researchers that they are not interested in the emotions of other people.
Special interest
I can wear the same clothes for months because I like its texture. Clothing stores annoy me a lot: to change clothes several times for me is a sensory hell, so I go there no more than once every six months. I buy several identical things at once, so as not to look for the same afterwards. The same story with food - I choose it by texture. For example, I can eat mussels or drinking yoghurt every day, I used to prefer tubules with condensed milk.
The second sign of autism is considered to be the propensity for repetitive or "stereotypical" activity, but many things can be brought under this statement. As a rule, people from the spectrum have special habits, rituals and interests that make routine more predictable and understandable. “A person with autism can repeat the same phrases or sounds, constantly making unusual movements with his hands or body,” says Osin. People from the spectrum may have a bad attitude to any changes, so it’s important for them that food, the way from work to home, clothes and furnishings in the apartment do not change. And yes, a shirt of improper cut or boots with an unusual shoe can too aggressively affect the sensory system of a person with autism.
People with autism often have so-called special interests — things, topics, actions, or even people that cause the most enthusiasm and involvement. Painting, programming, insects, cosmetics, actors, tractors, garbage collection - anything can become a special interest. The difference with the neurotypical hobby is colossal. For people with autism, special interests may have a basic identity, the main topic for conversations and thoughts - therefore, it is at least inhuman to dismiss discussions that are so important for a person with ASD.
Previously, my special interest was reading by itself. I carefully read absolutely everything - from books to instructions in buses and corridors of clinics, which usually no one pays attention.
My special interest in drawing appeared at the age of twelve. Now I am a leading 3D artist in the company, in addition to this I take a bunch of freelancing. And it is always sincerely interesting to me, well, and still allows you to make good money.
I like to draw faces, I like to photograph people close up, I like to read essays about modern art and at the same time I study as a designer. From time to time it happens that due to the SI (special interest) it is difficult for me to fulfill some kind of daily obligations or routine work, but this is decided by a correctly drawn up daily routine.
My behavior pattern is switching. I can spend hours pursuing my special interests, but if I need to perform any tasks that do not include SI, the only way to be productive is to switch from one business to another every thirty minutes, otherwise I will quickly get bored with it and as a result I’ll do I won't do it.
A person with autism rarely has one thing, for example, a special interest may coincide with repetitive speech. Or habits will go along with the same type of movements and acute sensory reactions, says Elisha Osin. Here it is also important to remember about the diversity of the spectrum: some people can be immersed in work and talk about it a little more than neurotypical friends, others can walk around the room all day long or pull the same thing in their hands.
Sensory overload
It can be hard for me to be in places of large crowds of people, at parties, in cinemas. Sometimes because of this, I fall out of reality, but I try to control such states. I like to communicate with people, but sometimes it is difficult.
Many people with autism occasionally experience sensory overloads due to too bright light, a large number of people, a loud sound (some even wear special headphones so as not to provoke problems), unusual sensations on the skin, the inability to understand the interlocutor in principle. "Sensory overloads are always about the difficulties of colliding with the external environment. In a sense, they are familiar to neurotypical people as well. When we get tired and tense in unusual circumstances, we can become more irritable to some kind of stimuli. For people with autism, this manifests itself times stronger, "- says Elisha Osin.
Sensory overloads, indeed, often occur in people with autism - however, the researchers have not yet decided whether to consider them as an independent symptom of belonging to the spectrum. "Now this is one of the main problems in the diagnosis of autism, because, in my opinion, overloads can relate to the manifestation of other disorders," said Osin.
Sensory overload often causes severe reactions. In a community of people with autism, they are usually divided into shutdowns (shutdown) - stupor, silence, withdrawal, lack of response to many stimuli; and meltdown (meltdown) - screams, tears, aggression (often in relation to himself). Although researchers say that the effects of sensory overloads are similar to the typical reactions to fear - to run, strike or pretend to be dead. However, it is possible to adapt to sensory overloads: either with the help of a specialist, or, as often happens, intuitively. Usually, self-stimulation (or "stimming") is used - repetitive actions that help to distract from stress.
As a child I thought that everything was around with jambs, and I was adequate. I had the obsession to teach Grandma to stimulate, because she did not know how to calm down. It seemed to me that if she was swinging on a swing or walking in circles, she would feel better. I was lucky, since childhood my stimulation was expressed in large physical activity - more often I just walked around the room in circles, and my parents did not see anything strange about it. I still love swings and even specially chose an apartment so that there are more of them in the district. Almost every day I go out to swing at least a couple of hours. Without this, I will be restless.
I use steam when I’m nervous or focused. Unfortunately, I can not stimulate constantly, as it scares people and they can react aggressively. From deliberate stimming: I tap my fingers or palm on hard surfaces, bite my lips, pull my hands if I am very excited. Now I am trying to get rid of unconscious manifestations of stimulation and self-damaging stimulation. For example, I try not to scratch myself and not to bite my nails, but this basically happens unconsciously, so the solution of the problem requires effort.
Sometimes, a person’s preferred stimulation may not fit into social norms, because it is chosen unconsciously - for example, loud strikes on a table or walking from corner to corner in public places. And sometimes it can be dangerous to remind self-chemistry. Some people with autism scratch their skin, beat their heads against the wall - in general, cause damage to their body due to the characteristics of sensory perception.
Diagnostics
It’s quite possible to determine whether a person belongs to the autism spectrum already in eighteen months, says the expert of the Naked Heart Foundation and the children's neurologist Svyatoslav Dovbnya: “True, the first thing I send is hearing testing — autism is often confused with hearing impairment, because respond to the name ". An experienced specialist can determine the disorder in a couple of hours: children with autism usually do not engage in interactions with adults, do not focus their eyes on faces, use toys purely mechanically, without imagination, they have problems with the development of speech. Often they perceive people as objects - for example, they can climb an adult like a mountain, not considering this to be an element of an unusual game.
"Several American institutions diagnose autism quite well already at 6-8 months - they use computer technologies that track the trajectory of the eye. This method works because the child focuses on the human face even in the first minutes of life. At the head of a neurotypical person, this is the most important thing, ”Dovbnya said.
In Russia, it is considered that the majority of such cases, but it is not. Studies offer very different numbers. Statistics say that autism can be associated with the features of cognitive development in 25% and 80% of cases, says Elisha Osin. Obviously, the wider the spectrum, the less this figure will be. It is also known that people with autism have epilepsy more often. And the numbers are contradictory again. Some say that epilepsy is present in 5% of people in the spectrum, someone calls as much as 30%, adds Osin. In general, the scientific community still does not have a clear consensus on what autisms are and who probably belongs to the spectrum. Including due to the fact that high-functional autism has not been diagnosed for a long time.
The causes of ASD remain obscure, but at least it is quite clear that autism is an inborn neurological feature. Neither vaccinations (for the famous publication in the scientific journal The Lancet was excused even in zero), nor the cold attitude of the mother (as they thought for a long time in the twentieth century and ashamed women) have nothing to do with it. Researchers are studying what drugs can affect the fetus during pregnancy, whether it is important to live in ecologically unfavorable areas, and, of course, analyze the genes. It is already clear that picking up one key to all autisms will not work: scientists have identified at least 65 genes that are precisely related to the occurrence of ASD, and about 200 are supposedly, but this does not explain the overwhelming majority of cases. “The causes of autism remain a mystery, but no more than the causes of cancer or diabetes,” says Elisha Osin.
According to statistics, one of the 68 people is autistic. From my own experience, I can say that of these 68 still 5-6 undiagnosed women. This is at least one classmate, one colleague, one and more relative of each of us. Lack of eye contact and social clumsiness are considered “modesty”, meltdowns are bad manners, special interests are socially approved.
Women are less likely to be diagnosed with ASD. Studies offer completely different ratios of men and women with autism - from 2 to 1 to 16 to 1. A typical image of a person with autism is a lonely boy on a swing, while girls stand aside. Underdiagnosis of women, in fact, is largely connected with the peculiarities of socialization. Girls require modest behavior in public, so it’s easier for them to adjust, they don’t expect initiative in group games, so they can simply follow other children, and silence can be taken for shyness - this is especially true in the case of high-functioning autism.
“Often, the special interests of girls with autism are“ typical ”for their peers. They may be interested in ponies or princesses, and because of this it is more difficult to get a diagnosis. There is also an idea that autism is rare for girls, which leads to a smaller number of diagnoses. But this is hardly the case - many developmental disorders and learning difficulties like ADHD or dyslexia are diagnosed more often in boys than in girls, ”said Osin. However, the same ADHD is often expressed in women not in the same way as in men (but the classification is based on their symptoms), - medicine drew attention to the problem of underdiagnostics of this syndrome only recently. Perhaps the same gap may exist in the autism spectrum.
Not a disease
Аутизм - это не болезнь, поэтому о "лечении" не может быть и речи. Сейчас единственный действенный метод - это обучение, которое помогает некоторым людям с аутизмом стать более самостоятельными. "Таким образом можно показать человеку, как лучше выражать свои эмоции, соблюдать современные правила беседы или просто научить говорить. Это помогает не просто осваивать навык, но и возбуждает интерес к учёбе и общению в принципе", - говорит Осин.
Basically, for this purpose, applied behavior analysis (or ABA-therapy) is a separate discipline that is used even in sales organization, employee incentive system and in business in general, says Tatiana Morozova. But it gained the greatest popularity as a method of adapting people with autism to the environment.
All this is difficult and requires strength, so there are hundreds of alternative ways to "cure" autism. Holding therapy (to keep a person until he calms down), leeches, painful massage, electrophoresis, injections of untreated stem cells and extracts from bovine brains, warming up according to Charkovsky - all these methods are at least ineffective, as a maximum - dangerous, Svyatoslav Dovbnya considers. “Some people with autism have additional diagnoses that require medication or special exercises. You can treat depression and problems with the gastrointestinal tract, but this will have nothing to do with autism,” says Elisha Osin.
"Autistic" or "Autistic"
Am I carrying autism in my pocket? I am an autistic, autistic woman, this is the same part of me as the color of my eyes and the number of kidneys.
In modern Russian ethics, it is customary to say "people with autism." I prefer the "autistic person" option, since this definition is the part of me that does not make me better or worse than the rest. The wording “a person with autism” suggests serious illnesses, which high-level autism is not.
The definition of “person with autism” subconsciously I do not like, because it does not express the totality of autism. Autism is the foundation of you. Personally, I consider myself an autist, and then a man. I would not change my autism for anything, because without it I would not have realized my dream. My corrosiveness and attention to detail are very helpful in my work.
Autism is not only a medical diagnosis, but also an important word in the struggle for civil rights. The principle of inclusion itself arose largely due to the efforts of Lorna Wing and the British National Autistic Society: since the 1960s, they have demanded that the educational system be reviewed to include people with autism spectrum disorders. Accompanying programs survived even the neoliberal turn of the 80-90s, when the states of Western Europe increasingly refused social benefits and targeted assistance. At present, an inclusive environment, at least declaratively, is a world standard of attitude towards people with ASD and other features.
Later, with the advent of the Internet, there was a movement for neuro-diversity - its activists are fighting against the definition of autism as a disorder or disease. With this approach, people without autism should not be called "healthy" or "normal", but neurotypical. Judi Singer, a sociologist and advocate for the rights of people with autism, believes that the call for neurodiversity can be considered a full-fledged political statement, and people with autism the same advocacy group as national minorities, LGBT people or women. That is why autism for many becomes not a disorder or a feature, but a full-fledged identity. So calling yourself "autistic" and not "a person with autism" is an important statement. Another question is whether neurotypical people can speak in the same way, not knowing how a particular person relates to this.
Adaptive therapy is too vague a concept, and includes soft cognitive behavioral, and tin, such as holding therapy and ABA. I think that people need to be made more autistic. Absurd, right? Long mimicry under the neurotype leads to burnout. It’s impossible to make neurotypical from an autistic person. You can adapt to life in society, but society must also be prepared for inclusion.
The discourse on the topic of adaptation therapy is rather ambiguous. I am of the opinion that an autistic person should independently develop his basic life skills and excessive care and upbringing in some situations may be akin to violence. Honestly, I just have not met a single clinic where ADT would not look like something similar to eugenics. Everywhere these slogans: "We will make your child normal." I do not believe in the human norm. Given that in our country the culture of raising children is poorly developed and the carrot and stick method is still considered almost the most effective, it’s scary to think what compulsory education in the form of ADT can mean.
It seems to me, just as we explain to neurotypical children how to hold a spoon correctly, we can explain this to an autistic child. Yes, it may take more time, but at least it will not damage the psyche draw and will not affect the sense of basic security. Over time, many autistic people somehow adapt to the environment. Not because the environment mines them for themselves, but simply because it is more convenient to live this way.
You will not make a neurotype from an autistic person. Environmental inclusion is the best way to ensure peace and freedom for a neuro-distinct person with minimal losses. But more importantly, I consider it necessary to educate people on the subject of autism and neurodiversity. Only then will society cease to be xenophobic, cease to consider the word “autist” as an insult, and autism as an incurable disease.
As a child, I was taken to ABA a couple of times to the regional center - there was no effect, and I didn’t really like it, most likely just because of the situation.
Proponents of neuro-diversity actively criticize behavioral therapy for intensity, attempts to "remake" a person with autism into neurotypical, compare ABA with training, draw attention to overtly violent methods like "quiet hands", during which people with autism disaccustom with stimming, prohibiting them from moving their hands. Autism is, indeed, still trying to “cure” with dangerous methods, but, according to Aspen, modern behavioral therapy has already reworked the criticism that still sounds to her: “Experts quickly enough understood what methods discouraged children from wanting to attend sessions and becoming more sociable. Besides, people simply became miserable, and it was hard to hide. "
This criticism often comes from people with a highly functional autism spectrum disorder — often they simply don’t need special therapy. While teaching, as a rule, those who hardly integrate into society. “In the 70s, about 75% of children with autism did not speak in the United States at the time they started school, now it’s 25%, largely due to supportive therapy,” says Svyatoslav Dovbnya. Learning for many can be a chance to speak as equals, claim their rights or criticize the existing system. The world tends to be inclusive, and for this neurotypical people it is absolutely necessary to make contact with neuro-different people in order to make the environment more comfortable for everyone.
Illustrations: Dasha Chertanova