Why parents of autistic people are afraid that their children will outlive them. “70% of people with autism are forced to live under supervision Children with autism in adulthood

One of the most annoying arguments in the ongoing Internet debate about whether autism is a “vaccine-related epidemic” (it is not) is “where are all the older people with autism?” It is invariably put forward by fake advocates for autistic people (meaning Age of Autism and their sponsors) who do nothing to help find the true answer to this question. Have they funded attempts to research autistic adults, their needs, what they did, what went wrong in their lives? No.
Well, fortunately, the autism community and the autism research community consider the issue of autism and adults to be important. Sufficient research in this area has not been carried out anywhere, but some have been carried out.

The title of a recent study on this issue says it all: “Premature mortality in autism spectrum disorders.”

Doctor's Notes: Why do people with autism die so young?
Well, a large study out of Sweden is opening up a broader view of premature mortality among people with autism. Neuropsychologist Tatja Hirvikoski and her colleagues from the Karolinska Institute compared the mortality rates of people with autism and the general population over two decades. Reporting from Stockholm, Dr Hirvikoski said she was "shocked and horrified" by the results. Her team found that the average age of death for people with autism was 54, compared with 70 for the general population. For a person with autism and a learning disability, the average life expectancy was only 40 years.
Read that again—the average life expectancy for autistic people like my son is 40 years.

Some might argue that I am using this work to criticize those who promote “the idea that autism is a vaccine-related epidemic.” First, they deserve criticism. They wasted 2 decades of propaganda in pursuit of an untenable idea. It is possible that some small portion will read Dr. Fitzpatrick's article and heed the wake-up call that we need to put our efforts into advocating for a better life for autistic adults. By “we” I mean parents of children with autism. Thank God we have autistic adults who are fighting for this now. And instead of dismissing them with the usual “you're not like my child” arguments that we as parents of children with autism throw around, it's time to join forces with people who are working to change the situation.

I can already write the responses to this study that will come from the fake autism advocates and anti-vaxxers: “Look at the high mortality rate among autistic adults. This is the damage caused by vaccinations!”
If you still think this way, you are part of the problem, not the solution.
And if you're thinking, "This problem only affects autistic people with intellectual disabilities," here's a line from Dr. Fitzpatrick's article that's worth considering:

“For people with autism without a learning disability, the leading cause of early death is suicide, which is nine times more likely to occur (than the rate of suicide in the general population).”

According to John Elder Robison (an autistic adult), suicide is a threat to people without intellectual disabilities.

What kind of support—housing, employment, day programs, medical support—do autistic adults need? What contributes to their early death rather than a long and happy life? These are the real questions. These issues deserve our attention. And the entire story of “autism as a vaccine-induced epidemic” is built on the denial that there is a large group of undiagnosed autistic adults. It is built on the diversion of human rights activities from the active movement to improve the lives of people with disabilities in favor of anti-vaccination campaigns.

We've only spent a couple of years here in California trying to re-fund the disability system. You would never know this from reading sites focused on vaccinations, such as the Age of Autism blog or Robert "Dr. Bob" Sears' Facebook page. You could see a lot of wasted effort putting pressure on California's vaccine bill (along with Dr. Bob's claim that he represents my child as well as other autistic students in California - hey Bob, where the hell were you when you really were do we need?).

The message is simple and clear - autistic adults die much earlier than the general population. If things don't change, my baby probably won't live to be my age. Very active propaganda activities are focused on the fight against vaccinations. Okay, even if you don't agree with me that I think you're wasting your time, you need to make real efforts in areas that will change the way we support autistic adults.

For those – I'm thinking first of Anne Dachel from Age of Autism – who keep saying “where are the older people with autism”... Keep saying it. And watch how nothing changes. And blame it on someone else. For those who truly want a better life, now is the time to start working for change.

Unusual and strange, gifted child or adult. Among boys, autism is several times more common than among girls. There are many causes of the disease, but all of them have not been fully identified. Features of developmental deviations can be noticed in the first 1–3 years of children’s lives.

Who is this autistic person?

They immediately attract attention, be it adults or children. What does autistic mean? This is a biologically determined disease related to general disorders of human development, characterized by a state of “immersion in oneself” and withdrawal from contacts with reality and people. L. Kanner, a child psychiatrist, became interested in such unusual children. Having identified a group of 9 children for himself, the doctor observed them for five years and in 1943 introduced the concept of EDA (early childhood autism).

How to recognize autistic people?

Each person is unique in its essence, but there are similar character traits, behavior, and preferences in both ordinary people and those suffering from autism. There are a general number of features that are worth paying attention to. Autism - signs (these disorders are typical for both children and adults):

• inability to communicate;
• impairment of social interaction;
• deviant, stereotypical behavior and lack of imagination.

Autistic child - signs

Attentive parents notice the first manifestations of the baby’s unusualness very early, according to some sources, before 1 year. Who is an autistic child and what features in development and behavior should alert an adult in order to promptly seek medical and psychological help? According to statistics, only 20% of children have a mild form of autism, the remaining 80% have severe disabilities with concomitant diseases (epilepsy, mental retardation). Starting from a young age, the following signs are characteristic:

With age, the manifestations of the disease can worsen or smooth out, this depends on a number of reasons: the severity of the disease, timely drug therapy, learning social skills and unlocking potential. Who is an autistic adult can be recognized already at the first interaction. Autism - symptoms in an adult:

• has serious difficulties in communication, it is difficult to start and maintain a conversation;
• lack of empathy (empathy) and understanding of the states of other people;
• sensory sensitivity: a simple handshake or touch from a stranger can cause panic in an autistic person;
• disturbance of the emotional sphere;
• stereotypical, ritual behavior that persists until the end of life.

Why are autistic people born?

In recent decades, there has been a surge in the birth rate of children with autism, and if 20 years ago it was one child in 1000, now it is 1 in 150. The numbers are disappointing. The disease occurs in families with different social structures and incomes. Why autistic children are born - the reasons have not been fully elucidated by scientists. Doctors name about 400 factors influencing the occurrence of autistic disorder in a child. Most likely:

• genetic hereditary anomalies and mutations;
• various diseases suffered by a woman during pregnancy (rubella, herpetic infection, diabetes mellitus);
• mother's age after 35 years;
• imbalance of hormones (in the fetus the production of testosterone increases);
• poor ecology, mother’s contact during pregnancy with pesticides and heavy metals;
• vaccinating a child with vaccinations: the hypothesis is not confirmed by scientific data.

Rituals and obsessions of an autistic child

In families where such unusual children appear, parents have many questions to which they need answers in order to understand their child and help develop his potential. Why do autistic people not make eye contact or behave emotionally inappropriately or make strange, ritual-like movements? It seems to adults that the child ignores and avoids contact when he does not make eye contact when communicating. The reasons lie in a special perception: scientists conducted a study which revealed that autistic people have better developed peripheral vision and have difficulty controlling eye movements.

Ritualistic behavior helps the child reduce anxiety. The world with all its changing diversity is incomprehensible to autists, and rituals give it stability. If an adult intervenes and disrupts a child’s ritual, aggressive behavior and self-injury may occur. Finding himself in an unusual environment, an autistic person tries to perform familiar stereotypical actions in order to calm down. The rituals and obsessions themselves are varied, unique for each child, but there are also similar ones:

• twist ropes and objects;
• put toys in one row;
• walk the same route;
• watch the same film many times;
• snapping fingers, shaking their heads, walking on tiptoes;
• wear only clothes that are familiar to them
• eat a certain type of food (meager diet);
• sniffs objects and people.

How to live with autism?

It is difficult for parents to accept that their child is not like everyone else. Knowing who an autistic person is, one can assume that it is difficult for all family members. In order not to feel alone in their misfortune, mothers unite in various forums, create alliances and share their small achievements. The disease is not a death sentence; a lot can be done to unlock the potential and sufficient socialization of a child if he is mildly autistic. How to communicate with autistic people - first understand and accept that they have a different picture of the world:

• take words literally. Any jokes or sarcasm are inappropriate;
• tend to be frank and honest. This can be annoying;
• don't like to be touched. It is important to respect the child's boundaries;
• cannot stand loud sounds and screams; calm communication;
• it is difficult to understand spoken language, you can communicate through writing, sometimes children begin to write poetry in this way, where their inner world is visible;
• there is a limited range of interests where the child is strong, it is important to see this and develop it;
• the child’s imaginative thinking: instructions, drawings, diagrams of the sequence of actions - all this helps learning.

How do autistic people see the world?

Not only do they not make eye contact, but they actually see things differently. Childhood autism later transforms into an adult diagnosis, and it depends on the parents how much their child can adapt to society, and even become successful. Autistic children hear differently: the human voice may not be distinguished from other sounds. They do not look at the whole picture or photograph, but select a tiny fragment and focus all their attention on it: a leaf on a tree, a lace on a shoe, etc.

Self-injury in autistic people

The behavior of an autistic person often does not fit into normal norms and has a number of characteristics and deviations. Self-injury manifests itself in response to resistance to new demands: he begins to bang his head, scream, tear out his hair, and runs out onto the roadway. An autistic child lacks a “sense of edge” and traumatic and dangerous experiences are poorly consolidated. Eliminating the factor that caused the self-injury, returning to a familiar environment, talking through the situation allows the child to calm down.

Professions for autists

Autistic people have a narrow range of interests. Attentive parents can notice the child's interest in a certain area and develop it, which can later make him a successful person. What autistic people can do, given their low social skills, are professions that do not involve long-term contact with other people:

• drawing business;
• programming;
• repair of computers, household appliances;
• veterinary technician, if you love animals;
• various crafts;
• Web design;
• work in the laboratory;
• Accounting;
• working with archives.

How long do autistic people live?

The life expectancy of autistic people depends on the favorable conditions created in the family in which the child, then the adult, lives. The degree of impairment and concomitant diseases, such as epilepsy, profound mental retardation. Accidents and suicide can also be reasons for shorter life expectancy. European countries have explored this issue. People with autism spectrum disorders live 18 years less on average.

Famous autistic personalities

Among these mysterious people there are super-gifted ones or they are also called savants. World lists are constantly updated with new names. A special vision of objects, things and phenomena allows autistics to create masterpieces of art, develop new devices and medicines. Autistic people are increasingly attracting public attention. Famous autists of the world:

Just a few decades ago, autism was an unexplored and mysterious disease that was most often associated with the feature film Rain Man and Savant syndrome. This disease was diagnosed extremely rarely, approximately in a ratio of 1:5000.

But modern medicine and science have gone further in this matter. And society, thanks to the dissemination of information, today understands more about the characteristics of these people. Strange and unusual, gifted, talented, and at the same time lonely, asocial and not adapted to life - these are some of the main descriptions of people with ASD.

Major autism factors that may affect lifespan

Two years ago, Swedish scientists and employees of the British charity Autistics were interested in the question: “Does having autism affect life expectancy? How long do people live with autism? About 27 thousand Swedes with autism took part in the research, of which 6.5 thousand subjects had learning disabilities. Scientists also analyzed about 2.5 million neurotypical people in parallel.

As a result of the research, scientists came to disappointing conclusions:

• patients with ASD in adulthood die 40 times more often than ordinary people due to the development of neurological conditions (for example, epilepsy);
• people diagnosed with autistic disorder live 30 years less on average;
• Suicides among autistic people are 9 times more common.

The reduction in life expectancy of patients with autistic disorders, according to scientists, primarily depends on the following factors:

• metabolic disorders and adherence to a limited diet;
• minimal physical activity;
• social imbalance;
• depressive states.

Examples of long-livers and famous personalities with ASD

Leo Kanner first described autism almost 75 years ago, in 1944. Before this, it did not exist at a medical level, and therefore its official prevalence was zero. There were obviously people with autism, but they were simply considered crazy or unscrupulous.
Who is the most famous person with autism? Einstein is on a list of historical figures suspected of having autism. It is believed that he had ASD because he had language and educational barriers. Other historical figures believed to have had autism include Charles Darwin, Isaac Newton and Mozart.
Here are a few.

Wolfgang Amadeus Mozart

They say that Mozart repeated facial expressions and needed constant movement of his arms and legs. His hearing was very sensitive. By studying letters between the musician and his family, historians learned that one day Mozart was a little bored, so he jumped up on the table, meowed like a cat and did a somersault.
James Durbin

James was a hero to many when he competed on Season 10 of American Idol and spoke openly about his Tourette's and Asperger's syndromes.
Daryl Hannah

The actress said her diagnosis with Asperger's nearly ruined her Hollywood career. “I’ve never been on a talk show, I’ve never gone to a premiere,” she says.
Tim Burton

Tim's wife, Helena Bonham Carter, began to suspect her husband's diagnosis of Asperger's syndrome after watching the acclaimed film "Rain Man" - many of the symptoms of the disorder began to line up with the traits she loved in her husband.
Helena says: “We were watching a film about autism and he said he felt like a child. Autistic people have application and dedication. You can say something to Tim while he's working and he won't hear you. But this quality also makes him a fantastic father, and he has an amazing sense of humor and imagination. He sees things that other people don't see."
Andy Warhole

A simple repeating pattern defined an entire era of art. Dr Judith Gould, director of Eliot House, the UK's leading diagnostic center for autism and Asperger's syndrome, suggests that Warhol's love of repetition was actually a symptom.
Dan Harmon

Dan is the creator and writer of the popular television show. While developing one of his show's characters, he began researching ASD and realized that it was also related to the character's pathology. In a fantastic interview with Wired Magazine, Dan shares his self-diagnosis of autism: “I started looking for these symptoms so I knew what they were. And the more I looked at them, the more familiar they seemed.”
Lewis Carroll

Lewis Carroll had? Historians aren't entirely sure. Professor Michael Fitzgerald of Trinity College Dublin compared the behavior of his patients with Asperger's syndrome with the facts described in the biographies of several famous men and decided that this syndrome also applies to them. Lewis was on his list.
Grandin Temple

“The thing is, when you have autism, you gradually become less and less autistic because you keep learning, you keep learning how to behave. It's like a game. I'm always in the game,” says Temple Grandin.
Dan Aykroyd

According to a 2007 article in The Guardian, actor Dan Aykroyd was expelled from two schools as a child due to behavioral issues and was diagnosed by a psychiatrist as having Asperger's syndrome with features of obsessive-compulsive disorder.
And these are not all famous people who have lived or continue to live full, albeit peculiar, lives with autism.

Olga Azova

– There is an opinion that the diagnosis of “autism” is made only here, and there is no such diagnosis abroad, is this true?

- No, that's not true. ICD-10, which we all use, and DSM-5 are international classifications of diseases. They, however, like us, began to write ASD (autism spectrum disorder) more often. There are different types of autism. When communicating with parents, I use ASD more - it seems to sound softer, but in everyday life I like “autism” more as a term, and it’s easier to understand what we’re talking about.

It seems to me that there are many issues in the area of ​​tolerance in this. No two children are alike. Even our own children, who are very similar to us, are different. Naturally, no two people with autistic conditions are alike. But if there is no logic in anything, then we will beat around the bush all the time and will not begin to help, we will drown in demagoguery.

I like terms that are clear, but we will still work individually with a specific child.

Correspondence table between DSM-IV and ICD-10

DSM-IV	ICD-10
299.00 Autistic Disorder	F84.0 Childhood Autism
299.80 Rett's Disorder	F84.2 Rett's Syndrome
299.10 Childhood Disintegrative Disorder	F84.3 Childhood Disintegrative Disorder
299.80 Asperger's Disorder	F84.5 Asperger's Syndrome
299.80 Pervasive Developmental Disorder – not otherwise specified (PDD-NOS) (including Atypical Autism)	F84.1 Atypical Autism
	F84.8 Other pervasive developmental disorders
	F84.9 Pervasive developmental disorders, unspecified
-	F84.4 Overactive disorder associated with mental retardation and stereotypical movements

This is what we really don’t have abroad, but we still have. There, if a child with autism grows up, he remains with the same diagnosis. In our country, the diagnosis can be changed to schizophrenia. But, fortunately, less and less often.

– Why have we heard almost nothing about autism before, but now it seems like there’s an epidemic?

– Autism was described in 1943, which means that this problem has existed since at least this year. Another thing is that the world has changed since then. Statistics are inexorably growing towards an increase in the number of people diagnosed with autism. If we take the rate of one case of autism per 88 people (the data for the last two years is 1:65, some sources even call the figure 1:45), then this is already more than 1% of all living people, that is, the epidemiological threshold.

Scientists are constantly searching for new treatments

– Is there anything new and encouraging in the study of autism today?

– You can’t tell us everything, let’s focus on several thematic areas. Conventionally, I will divide them into three groups: studies related to nutritional deficiencies, aimed at studying the microbiota and the connection with autism, as well as studies on the connection between the level of development of motor skills and the treatment of autism. Moreover, different studies are being conducted in parallel in each direction.

The first area is research related to nutritional deficiencies.

Thus, in a 2015 review of the Journal of the American Society of Nutrition on the nutritional status of individuals with ASD, there is evidence that decreased levels of folic acid, vitamins B6 and B12 can be considered as a biomarker in identifying ASD in the early stages of development.

Japanese specialist scientists from the La Belle Vie laboratory in Tokyo searched for the cause of the development of autism in children and came to the conclusion that by adding zinc to the diet of children, the risk of developing the disease can be significantly reduced. And other work by other researchers on the same topic has shown that even genetically altered cells associated with autism can respond positively to zinc supplementation.

And research from the same direction reports findings that relate to the causes and treatment of autism, namely that social interaction in children with ASD improves after taking vitamin D.

In the second direction of intestinal microbiological research. Perhaps these are the most extensive, one might say, even large-scale studies, which are carried out in several countries at once. Last year, at the 2nd Congress on Autism, which was organized by our center, a report was presented by Professor Prasad Dhuryati of the University of Delaware.

The research data at that time was only partially made public, that is, we received it first-hand. A professor is creating a computer model of the human gut microbiota to establish a link between bacteria that live in the gut and autism. Dr. Prasad's research confirms the idea that other researchers have come to that problems with the intestines (in the microbiota) trigger the mechanism of autism (the problem is in the genes of the microbiota themselves, and not in those that we inherit).

Previously, this problem was viewed exactly the opposite. That is, harmful substances penetrate from the gastrointestinal tract into the bloodstream, and then into the brain, causing autism. I can say that these are amazing, one might even say sensational, studies. Professor Dhuryati is working on creating a computer model, which in turn will create a diagnostic system for selecting treatment options.

Holard Winter, head of the American Association of Pediatric Gastroenterology, also says that children with ASD have a fundamentally different microbiota from healthy ones. True, the studies that the doctor talks about report that the frequency of gastrointestinal diseases is approximately the same as in healthy children.

But research by geneticist Ruth Ann Luna, initiated by Autism speak, on the contrary, suggests that gastrointestinal problems are more common in children with autism. Dr. Luna is also looking for new diagnostic tests using a subset of children whose microbiota could identify problems. This would also allow us to find new ways to treat autism.

– At what age can autism be diagnosed?

– In Russia, only a psychiatrist has the right to make a diagnosis of ASD. Until recently, I said that psychiatric counseling is possible only from the age of three, and classes for autism should begin from a year and a half. But at the end of 2016, a large-scale reform of psychiatric care was launched in Moscow. Now even one-year-old babies will be examined by a psychiatrist. A year and a half is the most favorable age for diagnosing autism. Then you can do a lot of things.

Physical education and craft for a leap in social development

– Is it important to start teaching a child with autism earlier, including physical education?

– I just wanted to talk about the third direction of various research. One of which, by the way, has something in common with research in the second direction. The journal Immunology and Cell Biology recently published the results of a study that confirms that if parents begin physical education with their children at the very beginning of life, this can affect the change in the microbiota. She will become, so to speak, healthier.

Thus, Tomsk scientists are developing ways to treat autism with the help of specially selected physical exercises. They have been studying proteins that are produced in muscles during exercise for several years.

The results of these latest studies are very important for me personally and because in our center we distinguish a number of procedures into a whole separate block in rehabilitation and empirically, over the course of several years, we can confirm that, in addition to motor skills themselves, exercise therapy, massage, cerebellar stimulation , trampoline and climbing gym activities can improve communication, cognitive function and help with sensory and behavioral problems.

– So, do children with autism still have a chance to adapt?

– First, it is important to answer two questions:

• Whose data will we rely on: domestic or foreign?
• Does the child really have autism or not? (Is this autism?)

Domestic authors are very “strict” towards children with autism and believe that more than half of children with autism require care in a hospital setting. Thus, many scientists believe that a significant proportion of patients, after many years spent in the hospital, develop signs of chronic schizophrenia; most children with autism remain disabled for life.

In our country there is a tradition according to which autism is entirely within the realm of psychiatry and is considered a type of mental illness. Although it must be said that there is progress on this issue as well. More and more specialists attribute autism problems to neurology.

Foreign authors provide more optimistic data: 1-2% of children with autism achieve a normal level of intellectual development and do not differ from ordinary children, approximately 10% of children study and work, they have a normal level of speech development and social behavior.

About 20% of children, despite a significant delay in speech development, learn and adapt socially. But nevertheless, 70% of people with autism cannot live independently and are forced to be supervised. Thus, in approximately 30% of people the initial diagnosis is transformed.

But I want to say that I gave more or less official figures, but it seems to me that with the development of science, and most importantly, targeted assistance, things are even better.

For about ten years now, the Israeli army has been recruiting people with autism into its ranks, they spend the whole working day studying data on a monitor from satellites. The characteristics of the disease make it possible to realize one’s potential.

Specific positive examples are also important. Of course, many are already familiar with the names of famous autists: American zoologist professor Temple Grandin, a film was even made about her, the president of a large IT company Sarah Miller, artist and member of the Order of the British Empire Stephen Wiltshire (he paints pictures from memory, conveying every little detail , without any initial sketches), US physicist Jacob Barnett, who defended his Ph.D. thesis at the age of 15.

I follow several Russian bloggers who have been diagnosed with autism. What they write about is important for understanding autism and the behavior of autistic children.

I will also give examples from the experience of our center. Among children with autism, there are many children with absolute pitch. It is very important when there are additional reserves: music, drawing, crafts. It's good when each of us has it. I often, following the Armenian proverb, echo: “He who knows a craft sits hungry until noon, he who does not know it sits hungry until the evening.”

Every school year gives us talented children. I'll only tell you about two. Maya is drawing. In addition to her ability to draw, Maya also has perfect pitch. About Maya.

I think that this little girl is already an accomplished artist.

Maya's drawings

There is also Slava. His talent was discovered during classes with a teacher at our center. Slava studies at a school at the conservatory.

He quickly learns quite complex melodies from notes and sings, almost without hesitation. I am sure that musical abilities are part of his future profession.

As I already said, the percentage of children with autism is now quite intelligibly stated as 1%. Such a number of people cannot be left behind, which is why medical research is being conducted in many countries, and recently issues of social adaptation of people with autism have been especially raised.

Not to isolate, but to accept into society

– How to recognize autism?

– I will briefly list the neurological markers and biomarkers of autism (including nonspecific ones): impaired communication, stereotypies (repetitive movements, postures, vocal reactions), sensory impairments, behavioral disorders – hyperactivity – “field behavior”, autonomic disorders, metabolic and immune disorders processes, disorders of the gastrointestinal tract, epilepsy, etc. I once asked myself a question: I started listing and counting the signs of autism, I stopped when I counted 150.

– What is especially important when correcting autism?

– The correction must be multi-stage. When discussing rehabilitation issues, the emphasis is always on treating the nervous system. In fact, the coordinated work of all systems is important, both because the body is a living system, and because the functioning of a child with ASD is only productive when both proper nutrition and toileting are established. The life of a living organism depends on the coordinated work of its organs and the conditions in which it is located.

Children with autism need to establish the basic vital processes of the body: nutrition, breathing, excretion, metabolism, development, and so on.

You need to start with examinations and consultations with doctors: a neurologist, gastroenterologist, immunologist and others.

Next, priorities are set. If a child has serious behavioral problems, then the correction is based on behavioral analysis, which is paralleled with other types of rehabilitation. If there are strong sensory problems, then you need to start by creating sensory comfort.

Most often, one child has everything disrupted at once: problematic behavior, sensory features, and no speech. Therefore, I am always in favor of a set of rehabilitation measures that will be aimed at restoring sensitivity and will help to cope with all behavioral issues and speak. But the procedures themselves will also be different for each problem.

– When is it too late to change something in the adaptation of a child with autism? At what age can you say that everything is lost?

– There are so-called sensitive periods of development. All basic functions, skills and abilities are formed by puberty; by the same age many final diagnoses are determined; before that there can only be a preliminary one. Parents also make every effort to rehabilitate in preschool age, well, maybe even during elementary school, then the vector changes. But nevertheless, we know that, for example, the vocal apparatus is formed by the end of puberty, and the full growth of the larynx by 36 years.

I have examples from life. A child with multiple lesions was born into a family of artists. At the time we met, the child was 18 years old. All the sensitive symptoms passed, but the parents did not stop; their son continued to pick up the pace of development and drew very well.

Sensitive period of development (also found sensitive) is a period in a person’s life that creates the most favorable conditions for the formation of certain psychological properties and types of behavior.

– By the way, what should we do about the impending puberty of a child with autism?

– This is a topic for a separate discussion. In our country, autism began to be actively studied approximately seven to eight years ago. As those kids grew up, the issues of puberty became more relevant.

And an ordinary child has many questions about the changes that occur to him during this period, but a child with autism develops phobias from misunderstanding and fear of new things.

We will outline important topics: issues of personal hygiene, self-defense, ethics in behavior when intimate topics arise, awareness of growing up and changes in the body in an accessible form, for example, using social stories, support from parents. A parent must keep their finger on the pulse.

– Autism: what should you be afraid of?

– Of course, there is nothing to be afraid of. When we created the center, and the main stream of non-speaking children unexpectedly turned out to be with ASD, then it was difficult. It is precisely in terms of the profile of the disorder that domestic science and practice have offered little to such children. In fact, we are one of the few who have undertaken to actively solve the problem. We were trained in many countries, participated in conferences there and conducted them ourselves, bringing methods and various instruments.

Now it is important to learn how to transfer this knowledge - this is the first thing. The most important thing is that at least outpatient medical personnel, starting with the district nurse and pediatrician, need to have sufficient information about the manifestations of autism and inform parents in a timely manner.

And second, you need to understand that a child or adult with autism is a special person or a person with special needs. It can be disharmonious in one way and completely preserved or even outstanding in another. While outwardly ordinary, have problems with social adaptation. It is important not to isolate such a person, but to accept him into society. I think this is the biggest problem right now. Having understood these people, even having already learned to help them, we need to give them the opportunity to learn to be like us.

children with autism spectrum disorder (ASD). It is more difficult for such people to socialize in society, communicate with others, and in the most severe cases they cannot speak, read or write. People with ASD and their relatives told Snob how to live with a person who doesn’t like touch, doesn’t understand jokes, doesn’t read emotions well, and why it’s time to forget stereotypes about autism

“Kisses and touching make me gag.”

Tatyana, 27 years old, Ufa:

As a child, I did not have any developmental delays: I read from the age of two, I speak normally. When I got a little older, I couldn’t sit through a lesson at school, I couldn’t write accurately with a pen and paint, I constantly wanted to spin around my axis. Studying was easy, but sitting in class/auditorium is still torture for me. I became hysterical from crowds of people and noise, and couldn’t stand being touched or wearing too-tight clothes.

Psychotherapists and psychologists gave stupid advice that doesn’t help ordinary people. They unanimously spoke about the need for socialization, taught them to break themselves, get out of their comfort zone, analyze and correct their behavior. I couldn't do it. My difference from others became more and more clear. By the age of 19, another problem appeared: all relationships with young people were like torture and ended quickly, I had no sexual desire. Psychologists repeated again: “You will meet the one and only one, you will love him, you will begin to trust him, you will want him.”

I found out that I have Asperger's syndrome by accident: a year ago I was admitted to neurology with a nervous breakdown, where I was prescribed a consultation with a psychiatrist. He gave me tests to take and got hooked on what most people call “having my head in the clouds”: I can, out of the blue, withdraw into myself and not hear what the other person is saying. I also don’t like to make eye contact and move away if they come too close to me.

One person close to me says that every day he meets much more inadequate people who buy iPhones on credit with their last money

On the one hand, it became easier for me: all the i’s were dotted. On the other hand, it’s not oncology, of course, but also a kind of death sentence. I still can't stand noise and crowds. Sometimes I can focus on some small detail for a long time. Well, I have a unique vision of the world: I may not see a building, a store, or anything else at point-blank range if I’m not looking for it purposefully. I have certain food preferences: I love chalk and charcoal, in my teenage years I still chewed erasers and expanded clay, washed, dried and ate, but now there is no such need. Before I started traveling abroad often, I was terribly afraid to try something new, but now I’m happy to experiment. I don’t have obvious repetitions of actions, but it is vital for me that interior items and clothing match each other in color and style.

Social contacts are a real challenge. I can easily ask for directions or resolve an issue at a municipal office, but I cannot be the first to start talking to a person on informal topics. If they come up, I’ll keep up the conversation and even pass for normal.

I work remotely - this is the only way out; I won’t be able to work in a team. The main work is related to geographic information systems. For fun, I write SEO articles and sell travel photos on stock.

Romantic relationships in the usual format are disgusting for me. Kissing and physiological odors cause an irrational gag reflex; I have already spoken about tactile contact. I also hate it when people force me to do something. I can’t stand being subordinated, but I don’t want to subordinate myself to anyone either.

I have friends, although not many, they are quite ordinary people. One person close to me, a scientist, says that every day he meets much more inadequate people who buy iPhones on credit with their last money.

“My wife said she won’t raise our son”

Sergey, 41 years old, Nakhodka:

Photo from personal archive

My wife and I began to understand that something was wrong with Nikita when he was 2 years old: he did not speak, did not respond to his name, and he also had uncontrollable falls on the floor and tantrums; it was impossible to calm him down. We then lived and worked in the Philippines and met tourists. Our friends had a girl the same age, and they noticed that the children were very different. We thought it was just a developmental delay, but friends suspected something else. Soon we returned to Russia, and in the provinces everything is very difficult with making a diagnosis.

At first, neurologists also spoke about developmental delay, and then they advised us to take Nikita to Vladivostok for examination. There it turned out that the child has atypical autism without mental retardation: he has a non-verbal intelligence that can be reached. We don’t have specialists in our city, so the family has to do this. Nikita at that time was 5 years and 7 months old.

When it became clear what was wrong with our child, my wife gradually began to move away from him, and a year and a half ago she said that she would not raise him. The last time we saw my mother was five months ago. Well, on his birthday, she called and asked him to kiss Nikita on the cheek for her, although she lives nearby and could have come.

Coaches I know said that Nikita was not made for sports because he did not understand commands and did not follow them. But I'm a fan of my child and believed in him

Now I am raising my son alone. At the municipal rehabilitation center two years ago, psychologists asked me how to understand my child, how to communicate with him. And the first thing they suggested when my wife left me was to send Nikita to a psychoneurological boarding school. But he is the meaning of my life!

I had to give up my permanent job. Previously, I was engaged in commercial video filming on a full-time basis, but now I switched to part-time work. I sometimes film and edit not only for money, but also through barter. Volunteer at a local charity for children with disabilities.

Now Nikita is 8 years old. He does not speak, cannot draw, read, write: fine motor skills are impaired. When he wants something, he takes my hand and shows it. We have a special school, but it is designed for mild forms of autism. Nikita is completely non-verbal, it is very difficult to teach him anything.

But recently we learned to roller skate. Coaches I know said that Nikita was not made for sports because he did not understand commands and did not follow them. But I am a fan of my child and believed in him, so a week later he went.

Children with autism have moments of overload when a lot of information accumulates in their heads and needs to be thrown out somehow. This results in uncontrollable hysteria

At first he didn’t understand that he needed to push off the asphalt with his skate in order to go. Then I took my son by one hand and began to lead him along the dead sidewalks with holes and bumps. After a couple of days, something turned on in Nikita’s head and, in order not to fall, he began to put his leg forward. Then we got onto a flat road, by the end of the first week the child was driving more or less, and now he goes around all the bumps on his own. We trained every day for 3-4 hours.

We'll be skating soon. You just need to agree with the coach so that the ice is free, because Nikita is scared of large crowds of people.

Children with autism have moments of overload when a lot of information accumulates in their heads and needs to be thrown out somehow. This results in uncontrollable hysteria that cannot be stopped. You can only be close and hold the child’s hand. Sometimes this happens on the street. People around me often don’t understand what’s going on, they come up and make comments, but I try not to pay attention. One day, on the playground, a woman asked Nikita something. I said that the child would not answer her because he had atypical autism. “Is it contagious?” she asked. Many people think that all autistic people are geniuses, and when they find out what’s wrong with Nikita, they ask if I let him solve a Rubik’s cube. And I would teach him to recognize danger, to understand what a traffic light and cars are. Nikita has no sense of fear, so he needs to be monitored 24 hours a day. I'm thinking about him learning to understand the world around him, not to mention speaking.

“I felt like a stupid, useless creature”

Daniil, 17 years old, Moscow:

At the age of 3 I was diagnosed with autism, although my intelligence was intact. I did not have standard childhood interests, I did not like fairy tales. At the age of 3, I learned to read, write and count - this, according to my mother, was almost my only hobby. My parents didn’t intend to make me a child prodigy, I just liked doing it. Mom says that once at a psychoneurological clinic I almost destroyed the entire office looking for a calculator. From the outside it looked like I was poorly brought up.

I didn't go to school right away. Several of them turned me down, even though they were private schools. During interviews, I would withdraw into myself and not listen to what they said. I ended up going to school at age 8, but straight into second grade. For the first few months, my mother sat with me in class. I couldn’t remember that I should address the teacher and other adults as “you”; it was hard to understand social norms. I had no friends, I hardly talked to anyone.

By the age of 11, I began to slowly realize that I was not like my peers, and in my essays I wrote that I had a difficult character. I started asking my mom why I wasn’t interested in what my classmates were interested in, and she said that I had autism. I didn't believe it. I told her that I would prove that I was not autistic, and that these were just flaws in my character that I would work on. Admitting my autism was very painful. By the age of 13, I finally admitted it and fell into depression. I felt like a stupid, unhappy, useless creature. After talking with a psychotherapist, I felt a little better.

The girls treated me better, sometimes they even felt sorry for me and called other boys fools

My self-esteem at a more or less normal level was supported by good studies. I let them copy: it seemed that because of this I had authority among my classmates. Studying was not so difficult, it was difficult to force myself to do my homework due to my psychological state.

When I moved to fifth grade, “A” and “B” were combined into one. This is how I ended up with some not-so-kind classmates. I was not only bullied, but mocked. They said “Kiss the wall!”, but it was difficult for me to refuse, or they asked me to dance the cha-cha-cha. I thought I was dancing well, but in fact I was dancing poorly, they laughed at me. I suffered greatly from bullying because I lacked communication. The girls treated me better, sometimes they even pitied me and called other boys fools. The boys respected my intelligence, but considered me socially retarded. I wanted to prove that this is not so.

My parents didn't allow me to play computer games, but my grandmother did. I felt relieved: others were playing, and so was I. At the age of 15, I realized that games would give me nothing, and I stopped playing them. I met people like me on VKontakte, but this brought temporary relief. Then I went into myself. Severe headaches prevented me from studying. I spent some time in the Mental Health Research Center and was in a sanatorium, after which I didn’t want to go back to school, I went to college after the ninth grade, but dropped out. Now I'm finishing school as an external student. I have become more or less “even”, I study normally, only my mother is unhappy that I do not complete all the tasks. But there is something else in my life besides studying! Since childhood, I wanted to earn money. Now I buy things in bulk at the market and sell them online. After graduating from school, I want to enter the Faculty of Business and Business Administration.

I feel resentment towards others and myself for what I had to go through when I found out about my diagnosis.

Another thing that bothers me is that I can’t tell if my friend is real or fake. One treated me rudely, did not appreciate gifts, and because I didn’t have a girlfriend, he said that I would be alone all the time. I felt offended and removed him from my friends list. I tried to meet girls on the Internet and on the street, but then I stopped communicating. It wasn't interesting. Once I had an attachment to a girl, but she used me: she cunningly begged me for a gift, borrowed money and did not return it, I did not feel cared for, when I was sick for a long time, she was not interested in my well-being.

I periodically experience attacks of loneliness and thoughts of suicide, and often have nervous breakdowns. I take sedatives because I yell at my relatives, I can yell at the whole house and I can’t control myself. Sometimes you want to cut your hands or drink. I am resentful of those around me and myself for what I had to go through when I found out about my diagnosis. I also get upset when they yell at me, consider me a child, when they underestimate my work on myself: my mother thinks that all my changes are her merit. My parents did a lot for me, that’s what my mother basically says. I don’t have a very good relationship with her, unlike my dad. I’m angry with her because I don’t feel like a happy person: she did a lot for me until I was 11-12 years old, and then she made a bunch of mistakes.

“I explained to my husband that it’s okay to cry.”

Yulia, 44 years old, Moscow:

Photo from personal archive

Niko and I met five years ago in an online gaming community. I thought he was strange: he was not like the rest of my friends, he spoke a lot, in detail and somehow wrong. One day there was a scandal in the community, everyone quarreled, but Niko not only remained calm, there was a feeling that there was a robot among us: he blew people’s brains out for three hours, and in a completely even voice stuck to his line. If someone yelled or started insulting him, he pressed mute so as not to hear the interlocutor. It was a fascinating sight! Everyone behaved emotionally, but he behaved rationally, and thus he resolved the conflict. You could say that I fell in love with him then, in some way because of his autism. Then another conflict occurred in the community: someone was offended by someone else, and difficulties began. And Niko always turned out to be “guilty” because he did not understand people’s emotional arguments, he answered in the wrong way and about that.

Then something clicked in my head. I thought about autism, started reading about it, and it helped me understand Niko’s behavior. As a result, we began to communicate more often, and at some point I took him to be tested for autism. Tests showed the presence of ASD. Before this, Niko, as he himself says, considered himself an alien. They always reacted to him like he was a freak. He saw that people were building relationships, but he was not. When Niko realized that he had ASD and there were many such people, he began to watch lectures online to understand himself.

If it were up to him, he would only eat rice and chicken for breakfast, lunch and dinner

We began to communicate closer, not only on gaming topics, but also on personal topics, we met, started visiting each other, and eventually got married. Niko finds it difficult to get used to new things; a new task seems to lead to a glitch in the program, because when he needs to learn a lot of new information, he freezes. When Niko came from Greece to Russia to get married, he fell into a stupor because he did not know what to expect. He tried to apply the models of Greek weddings to ours, but it didn’t work. I explained that we were having a secular wedding, not like what he saw in Greece: no crowd of relatives, only two friends for moral support, we sign and leave. I see he doesn’t understand. I went online, found a video from an ordinary Russian wedding and showed it to him. The panic has passed. At the registry office, the employee said that we should follow her into the hall and in the center, but she herself went not in the center, but to the side. Niko stopped, not understanding how to go after all. Now, when we watch the video from our wedding, we roar with laughter: Niko walks as if to an execution and begins to smile only when he realizes that it’s finally over.

Niko is inclined to act according to the scheme: as he is used to, so it will be. Every morning begins with a certain sequence of actions, from brushing teeth to squeezing cats. It takes an hour and a half to do everything. If the scheme is violated, it is very difficult for him. Previously, he was completely inflexible, but gradually the situation is changing: communication with me taught Niko that the scheme must be adjusted to reality, and not vice versa. Niko has certain food preferences: if it were up to him, he would only eat rice and chicken for breakfast, lunch and dinner. But again, a lot has changed in 5 years: before, new dishes came in with a squeak, but now if you turn away, my kimchi is no longer there.

Niko doesn't read emotions and hints. If I am offended by him, he will never notice in his life. I need to say straight out: that’s why I was offended by you. And Niko will tweak the scheme - he is very negotiable. And he, in turn, speaks calmly, without aggression, when he doesn’t like something.

I am generally a harsh and hot-tempered person. When I broke down for the first time, Niko was in a panic: his wife was yelling, what should I do about it?

We share household responsibilities, but at some point everything happens for the first time. And now Niko had to clean the bathroom for the first time. He asked what needed to be done there. I said: well, wash the sink, toilet, bathtub. He washed strictly according to instructions: the sink, toilet, bathtub - but did not touch the floor, mirror, etc.

I looked and asked: “Well, how did you clean up? There’s cat litter lying on the floor!” He says: “You didn’t say that you need to wash the floor.” Sometimes I just laugh until I cry. I say: “Well, you have your own head, don’t you? Okay, let’s change the scheme: look carefully at what’s dirty and clean it up.”

I am generally a harsh and hot-tempered person. When I broke down for the first time, Niko was in a panic: his wife was yelling, what should I do about it? I explained to him that it’s normal to yell or cry sometimes. People do this because they have quirks and emotions. That is, with Niko, I learned to say some things that I had never said in my life, and even see them from the outside. After all, something that seems obvious to you may not be obvious to another person.

Niko is the sweetest person, but completely different. And he greatly expanded my understanding of the world. Over the years, Niko himself has realized that people rarely act according to a pattern, and the norm is a very loose concept, and as long as people are comfortable and do not bother anyone, these are all thousands of variants of normal.