Autism from a Biblical Perspective. Will we defeat autism? What is the treatment of autism in Orthodoxy
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Practical theology
Shulman M.S.
Every person, regardless of age, gender, race, nationality, mental or physical ability, should have a chance to learn about the love of God that He pours out on us. We, as churches, have a responsibility to bring the Word of Heavenly Father's great love to all people on earth. Whether you are teaching a child who lives nearby with his family and goes to a regular school, or a child with a severe mental retardation from a boarding school, your students need God's great love.
Statistics
More and more Sunday school teachers around the world are dealing with students with autism. Much more is known about this condition now than just a few years ago. Research, teacher reports, and the media are talking about an increase in autism cases. It has gone from a rare disorder to a common one.
The incidence of autism is very high, with US statistics for 2013 showing one in every 88 children. On the eve of World Autism Awareness Day in 2015, epidemiologists from the United States released data for 2014: scientists now say that one in 68 elementary school students has the disease. Moreover, among boys, the prevalence is even higher - 1 case of autism per 42 people. This is hundreds, even thousands of times more than in the past decade. It is not yet known whether this is due to a real increase in the number of autistic people or to improved diagnostic methods.
In Russia, there are currently no reliable figures on the number of children with autism. Most recent reviews agree that the incidence rate is 1-2 people per 1000 for autism and about 6 people per 1000 for autism spectrum disorders, although due to insufficient data in the latter case, the real number may be much higher. In the 1990s and early 2000s the number of reports of new cases of autism has increased significantly. For a long time, autism was diagnosed as early childhood schizophrenia; at present, specialists, especially in the provinces, also do not have sufficient tools to make an accurate diagnosis. Therefore, the exact number of autistic people in Russia is unknown, but it is in the tens or even hundreds of thousands.
There is evidence that the real picture is this: children suffer from autism more often than diabetes, AIDS, cancer, cerebral palsy, muscular dystrophy and Down syndrome combined. More than 2 million people in the United States have autism, and tens of millions of people around the world suffer from the disease.
Despite the improvement in diagnosis and the development of new methods of correction, there is an increase in the incidence of autism. This threatens to create a whole layer of people with disabilities who society does not know how to take care of, and the church does not know how to reach, because these people themselves are not able to make contact.
Autism is a disorder of mental development, which is characterized by a number of specific manifestations, namely: violations in the field of social and communicative interaction and limited interests and actions. The causes of autism are still not known. Scientists believe that the disease occurs during the early development of the brain. However, the most obvious signs of this disease appear around the age of two to three years.
Although the nature of autism has a biological origin, there are cases of successful non-drug overcoming of autistic tendencies in personality development through activities and social communications.
In addition to the term "autism", the following terminology is also used:
1. Pervasive developmental disorder PDD - this term is used if the child has autism, but the picture is not sufficiently pronounced for a diagnosis of autism. It is also called atypical autism. A child in a weakened form exhibits autistic features and symptoms.
2. Asperger's syndrome - children with autistic behavior, but with good speech skills and average or above average intelligence.
3. Childhood disintegrative disorder DDD - such children developed normally during the first years, then began to lose skills and show signs of autism.
4. Rett syndrome - such a child has uneven brain development, seizures, autistic features. Rett syndrome occurs only in girls.
All these disorders are included in the group of Autism Spectrum Disorders - ASD.
The perception of the surrounding world by an autistic child is fundamentally different from ours.
As the mother of one autistic boy said:
“With a naked soul, they feel all the pain of the world at the same time, as they simultaneously perceive all sounds, all colors, all movements. Well, how can one not hide here, not close behind an impenetrable glass wall.
The problems that an autistic child has when interacting with people are due to the demanding nature of relationships. His behavior seems strange, interferes with the usual sedate course of meetings, which leads to his rejection by other people, including in the church. This interferes with the socialization of the child and impairs mental health, as well as depriving them of the opportunity to learn the Good News, worship in church and have Christian fellowship.
In addition to impaired communication skills, an autistic child may have intrusive stereotypes and inflexible behavior. So, for example, a child can eat only a few foods, from a certain plate and at a certain time. Such a seemingly small thing makes it impossible to eat in any other place. Stereotypes are repetitive behaviors that an autistic person tries to calm himself or drown out his exhausting sensory environment; so, they can continuously shake their hands in front of their eyes, spin in place, wave their arms like birds, sway, etc.
All this is perceived in the church as undesirable, disturbing, inappropriate behavior. Unfortunately, there is even an opinion that children are obsessed and therefore cannot withstand the course of the meeting.
A child with autism radically changes the entire lifestyle of the family. It is difficult for such families to get out of the house: going to the store can be a test, going to visit is an impossible obstacle, sometimes even taking a child for a walk seems impossible. It is even more difficult to organize a trip to church. Parents of autistic children are at risk for burnout. Working 24 hours a day without a shift, they often do not withstand the stress and give up, not trying to "fight" with the problems of the child. They spend at home day after day, being isolated from society, because they cannot invite people home: this causes irritation in the child, seizures, panic, mom and dad are embarrassed by their child, his behavior, strange habits, features. For example, many autistic people prefer to walk around the house without clothes because the touch of fabric on the body causes too much sensory stimulation for them. Such families need communication, acceptance, answers to the questions that the parents of a disabled child have from the very birth: “Why did God allow this in my life?”, “How does God treat my child?”
Unfortunately, many fathers of disabled children leave their families in the first three years of a child's life, unable to withstand the trials, psychological and financial stress, and the wife's preoccupation with the child.
Most of the moms in our club have been divorced in the past.
It is difficult to study the intelligence of an autistic child, however, according to various sources, more than 60% of autistic children have intact intelligence, and some have genius traits. These autistic people are called savants. Among the famous autists are: Doctor of Biological Sciences Temple Grandin, about whom the film of the same name was made, Bill Gates, presumably Albert Einstein and Wolfgang Amadeus Mozart, Isaac Newton, Leonardo da Vinci, Vincent Van Gogh.
There is indisputable evidence that autistic people understand a lot, in particular, they are able to comprehend spiritual truths.
Here is just one verse from an autistic girl:
For some reason I can't get enough
No food
No pleasant things
No meetings.
I'm not at all capricious
I have luxury and continuous holidays
No need.
I would like to eat only three times a day -
Not pickles, no, simple food.
But it's also not enough!
I would like to communicate
With good people.
But I can't -
Autism gets in the way.
With ridiculous behavior, with fears, dumb -
Who is interested in me?
Who needs me?
And the hands are inept, and the will is deprived -
Did you feel sorry for me?
No need!
The Lord is with me, I am not alone!
With me and my mother and sister,
And even dad helps
Although he does not always believe.
Father told me:
- your disease
It's good for you now.
Sonya Shatalova wrote this verse at the age of 8, a girl who was diagnosed with severe mental retardation at all commissions, could not speak and communicate, often repeated stereotypical hand swings and screamed, at the age of 7 she took a pen in her hands for the first time and began to write poetry. Thanks to her work, we can lift the veil into the world of autistic people and understand how they feel and how they respond to spiritual truths.
Church and autism
The church can and should take care to bring the gospel to such children, allow them to worship with others in the church, and support their families.
The view of the church on such and similar children changed over time: in Rus', almshouses were opened for them, where they were kept away from the people, or, on the contrary, they called them blessed, miserable, seeing in them a kind of prophets and listening to their mysterious babble and oddities, looking for they have a prophetic meaning. In Protestantism, the attitude towards mentally retarded children was ambiguous. So, in the records of Martin Luther's table conversations, there is a mention of a twelve-year-old boy, possibly suffering from a severe form of autism. Mathesius, Luther's colleague and author of Table Talk, writes that he considered the child a soulless mass of flesh possessed by the devil, and advised him to strangle him.
The modern view of the church is more humane. The therapeutic effect of the church community on mentally ill people has been known since ancient times. However, in our time, the church in Russia is not doing enough in this direction. It is difficult for today's congregations to accept people who are not like everyone else, who disrupt the flow of the meeting.
The Church can not only bring the Gospel to autistic children and their environment, but also provide real assistance in the form of socialization of these children through church clubs. There are cases of a significant improvement in the condition of children with autism, without medical intervention, only through socialization.
By providing your child with Sunday school, you can minister to their parents so that they can worship weekly and have Christian fellowship.
Statistics say that there are on average 20 people surrounded by a child with disabilities. This number includes parents, relatives, friends of parents, medical staff. All of them are interested in the problem of the child and ways to improve his condition. What a vivid testimony the improvement of the child's condition through the church club will be for them!
In Russia, in the Union of ECB, only a few churches are engaged in this ministry. Basically, this is a ministry to disabled children with various types of disabilities, autism is just one of the diagnoses.
Also, autistic children are engaged in Orthodox communities.
According to the ROC social service database, 6 organizations provide assistance to autistic people, including two full-time social and pedagogical rehabilitation centers in Yekaterinburg and Samara. The centers exist under the patronage of temples, children and parents, in addition to psychological and pedagogical assistance, receive spiritual guidance.
There is an attempt in America to centralize ministry to children with special needs. Thus, the American program for working with children with special needs "Nathanael's Hope", originated in a Baptist church in Florida in 2002 thanks to the parents of a disabled child Nathanael Kaka, has spread to 13 states and is already being reproduced in 64 churches in America. The highlight of the program is a weekly event called the Buddy Break. Parents have the opportunity to leave their child in the church for 4 hours under the supervision of volunteers and take a break, go on a date, and go about their business. For 4 hours, children are engaged in sports, developing and creative activities, as well as listening to a sermon and participating in joint worship. This program requires a large number of trained volunteers. The ratio of employees to children is approximately 2 to 1, that is, there are two employees for each child.
But this service is promising.
Possible forms and methods of church assistance to autistic children and their families:
Church visit
A class for autistic students in the School "Friend" for an autistic person during church events
Family visit at home
Providing financial assistance, gifts and attention on holidays "Nurse" for the child during the visit of the parents to the church or Bible group "Nurse" for the child during the visit of the parents
Club for autists and their unbelieving parents as a way of evangelism
Ministry to autistic people in Ufa
The ministry for children with special needs began in Ufa in 2011, in the summer of 2012 a summer camp was held for children and their parents, and in September 2012 a church club for children with special needs, their brothers and sisters and parents began for these families. During this time, the number of families has grown from 8 to 30 people.
The vision of the club: evangelization of children with special needs and their families in Bashkiria and replication of the model in other cities of the republic.
The club unites children from 5 to 18 years old with different diagnoses:
Cerebral palsy, ASD, Down syndrome, epilepsy, mental retardation, cleft lip. Among them are 5 autistics (Amina, Dilara, Miras, Kirill, Angelina) aged 9 to 16 years with a rather different clinical and psychological picture of autism. In most cases, these are the third and fourth groups of RDA, in one - the first. When combining children into a group, we include a child in it together with an individual leader who worked with him.
At first, a thematic holiday was chosen as a form of club work.
Permanent elements: family gathering, food, games, singing, craft, Bible story, edible craft.
In parallel, there is a sensory room, a Bible study circle for parents.
Variable elements: sports, physiotherapy, zoo room, water games (bubbles, foam), competitions, solo concert numbers, theatrical performances, amateur performances.
During the existence of the club, applied experience has been accumulated in training volunteers, counselors, Bible teachers, leaders of the circle for parents. This paper provides practical recommendations for all these categories.
When working with autistic people, competent organization of space and control over the sensory environment are extremely important:
It is necessary to check the flashing lights (may lead to seizures);
Noise level (for example, the sound of chairs being pushed back can cause a seizure in a child. Put tennis balls on the legs of chairs);
The presence of new circumstances (repair, noise from the street, etc.).
It is also necessary to organize a sensory room for unloading an overexcited child or a mobile sensory board.
It is better to zone a class for classes, and in each zone to carry out a separate action: do crafts in one zone, drink tea in another, sing songs in the third, listen to a Bible story in the fourth, etc. Zones should be clearly marked - with lines, colored tape on the floor, multi-colored carpets, or something else.
The time sequence helps to clarify the schedule M.S. Shulman "Ministry to Children with Autism"
niya, covering the sequence of actions in each specific lesson of the student, and his entire day, week, month and year.
The sequence of ongoing events and their own actions is presented to the student in the form in which it is easiest for him to perceive it: in verbal or visual form - with the help of pictures, photographs or even objects. The transition from one action (occupation) to another is presented materially: the page is turned over, the picture, the object is removed, a tick is placed in front of the completed point of the plan, and the child's attention switches to the next stage.
A thoughtful organization of the workplace also actively shapes the behavior of the student.
Since autistic people do not learn through natural imitation, many instructions need to be literally rewritten for them. The photo shows what the instructions for making crafts for a Bible lesson look like.
Individual maps and social stories are also helpful in engaging autistic people in the process.
Social stories are a learning tool for autistic people. You describe actions and behavior in a social place.
Through the story, you tell the child what to expect and how to behave. Make a visual schedule for it. “I will sit on the bench” - a picture of a bench and the behavior you expect from it. "I'm listening to a Bible story from the pulpit." Most of the words they hear while preaching have no meaning to them. It's good if they at least know what's going on now and that the preacher is telling stories from the Bible. So you can tell the child a completely social story about going to church. In the pictures it is better to draw objects, not people, because they do not pay much attention to people in church. It is better to laminate the pictures and make several sets so that the parents and the assistant have the same stories.
When reading a Bible story, visualization is essential.
It is desirable to use all the senses, illustrating the material for children. So, you can prepare a sensory board specifically for the lesson.
Outcome
The problem of autism is becoming more and more urgent both in Russia and in other countries. In the US, 1 in 42 children are diagnosed with autism. The number of autistic children in this generation is growing inexorably. And it is better to convey the Gospel to them at an earlier age, since later they can completely “close” from interaction with this world, and a whole layer of hard-to-reach people is formed.
The problem with autism is that it doesn't take hospitals, medicines, and detention centers to improve a person's condition, but communication. The church, being a loving and open community, through the competent organization of ministry to families with autistic children can significantly improve their condition and help them take the most important step in life on the path to socialization. Often families with autistic children do not meet support and acceptance anywhere. The Church has a similar resource.
Orthodox women's magazine "Slavyanka", No. 10, July-August 2007.
- Dmitry Alexandrovich, why do children have mental disorders?
There are a lot of reasons and provoking factors. Fortunately, the child's psyche has significant recovery reserves to help cope with a variety of stressful factors. Therefore, many forms of mental disorders go away in a child on their own, without treatment. However, there are disorders that, if not treated on time, can degenerate into stable anomalies of character, and in extreme cases, into severe mental illness.
In the origin of neurotic reactions in children, most authors emphasize the negative role of improper upbringing. A well-known specialist in childhood neuroses, Professor Alexander Ivanovich Zakharov, highlights the following aspects of it:
- The demands of parents exceed the capabilities and needs of children.
- Rejection of children by parents, expressed by an irritable-impatient attitude, frequent censures, threats and physical punishments, lack of necessary tenderness and affection.
- An inconsistent approach to parenting, which is manifested by a contrasting combination of strict restrictions and prohibitions in one parent and an indulgent-permissive attitude in the other.
- The inconsistency of education, its unevenness and inconsistency.
- Instability in dealing with children: increased tone, screaming, general emotional unevenness.
- Anxiety, constant anxiety about the child, the presence of unnecessary fears and protections.
Thus, it becomes clear that psychological problems and mental deviations in a child are largely associated with incorrect methods of education.
Manifestations of childhood neurosis are varied: emotional instability and hypersensitivity, tearfulness, easily changing mood, capriciousness, excitability, difficulty falling asleep, restless sleep, fears, sucking fingers, biting nails and the skin around them, stuttering, enuresis, nervous tics. Each age has its own symptoms.
Very often, neurotic manifestations in children are found in the form somatic (bodily) complaints and ailments- for example, the temperature rises, abdominal pains, headaches and the like appear, which often indicates a child's mental distress. Often, in response to adverse psycho-emotional circumstances, children can develop various diseases.
I'll give you an example. A grandmother came to the reception about her nine-year-old granddaughter. Her parents often quarreled, scandalized and finally divorced, her father left the family. Against this background, the girl developed bronchial asthma, and neither allergies nor changes in the broncho-pulmonary tissue were found, the fact of frequent colds was not established. It turned out that this is a neurogenic variant of asthma, that is, the cause of asthmatic attacks was a neurotic conflict. In other words, the cry of the child's soul burst into the light in the disease.
Another feature of childhood nervousness (neurotic, psychopathic) are behavioral disorders. Some children run away from home, skip school, others start smoking, try alcohol. Most of these guys are drawn into the street and brought up in their own way. Who is to blame? Parents. We must love our children, educate, pray for them. Improving the mental state of the child largely depends on the parents, their spirituality, relationships with each other, on what they will be able to create an atmosphere in the house.
Many modern families, living on their own and rejecting God's help, experience instability, various kinds of psychological and moral problems. These disruptions are fraught with scandals, and often end in divorce. How does this affect children?
A troubled family is a supplier of neurosis, illness, drunkenness, and now drug addiction.
But even in those families where things are better, spouses often do not know who to be the leader in the house, in the name of what to raise children and what to strive for. It hurts to see how irritation with each other, anger, dissatisfaction with life accumulate between spouses. Marital fidelity, Christian family life, examples of pious family life for a considerable part of people are only relics of the past, archaism. Dozens of articles, books, dissertations are written about family neuroses. The facts are crying out: every third or fourth family is “bursting at the seams”.
A family cannot build good relations without God's help! Only by walking towards God, loving each other through love for the Creator, the family acquires true happiness and fullness of being. This is proved by life, confirmed by history. Through faith, repentance, joint prayers, Christian upbringing of children and mutual love, spouses go to the main goal - the Kingdom of God.
Children must be protected from any pernicious influence, since a whole stream of various kinds of indecency is being poured onto their fragile souls today. Parental piety is an effective example for children to follow. Drunkenness, lack of spirituality, immoral behavior, which are opposite to it, are, alas, also an effective example, but a disastrous example. His Holiness Patriarch Alexy II very accurately remarked that "If there is no consciousness of the sacred in the soul, the abomination of desolation is affirmed in it."
Spouses should understand that the health of the child is laid already during pregnancy, in utero. And how the expectant mother carries the child largely depends on his health, including mental health.
- What kind of neurotic disorders are children prone to?
The greatest number of children's neuroses is observed in the senior preschool, younger school and adolescence. This is a feeling of mental tension, anxiety, anxiety in anticipation of upcoming troubles in everyday life; and the manifestation of intrusive images, thoughts and ritual actions; and various phobias; and neuropathy, characterized by increased irritability, capriciousness of the child, instability of mood, severe fearfulness.
One of the specific developmental disorders of school skills is dyslexia. This pathology occurs in approximately 5-6% of school-age children and the degree of its manifestation varies. Dyslexia is 3-4 times more common in boys than in girls. With dyslexia, it is difficult to translate alphabetic characters into sounding words. This is not just a slowdown in reading, but also its qualitative change. There are gaps, additions, replacement or distortion of letters.
For hyperkinetic syndrome motor disinhibition, excessive (useless) activity are characteristic. The child is whimsical, hysterical, acts without considering the circumstances, is not able to follow the accepted rules of behavior. Usually it is difficult for such children to adapt at school, they are extremely restless, absent-minded, they constantly strain everyone and provoke other children to misbehavior. Feeling their inferiority, they seem to do "evil" to others - a vicious circle mechanism arises. Hyperkinetic syndrome in its development has two trends. In one case, with God's help, with the competent tactics of parents, psychologists, teachers, doctors, by the age of 12-14, it weakens and disappears. In another, it transforms into psychopathy, and the personality becomes even more maladjusted. This trend is very unfavorable.
May develop during early childhood school neurosis. Its cause is the psychological unpreparedness of the child for school, rejection by his peers, humiliation, beating, excessive severity and inexperience of the teacher. A child suffering from this neurosis appears depressed, refuses to go to school, imitates (often unconsciously) various illnesses. Parents should be attentive, be able to recognize his mental difficulties in time and help him. A medical consultation or the advice of an experienced psychologist will also be useful. If a child is sick, then parents should understand that his well-being and mental state will largely depend on their piety.
I also note such a mental illness as anorexia nervosa. This disease is caused by refusal to eat in order to lose weight. At the same time, especially in the initial stages, the appetite is preserved and abstinence from food is given by a stubborn struggle with oneself. The peak incidence occurs in adolescence. As a rule, girls and girls become victims of this disease. The debut of anorexia often coincides with stress, unrequited love, rejection of feelings by young people or rejection of one's own appearance. And then the behavior of the girl is determined by this obsessive or overvalued idea - to lose weight, which is achieved by refusing food. Eating behavior is sharply perverted. In severe cases, cachexia, amenorrhea are observed, serious metabolic disorders occur, the psyche and the whole organism suffer, and the prognosis of the disease is not always favorable. Sometimes anorexia is a consequence of a mental illness. Therefore, you should definitely consult a psychiatrist for help.
As if the opposite of anorexia is the condition bulimia nervosa, in which stresses and troubles are "jammed". In this case, medical and psychological correction is also needed.
Among mental developmental disorders in children, special mention should be made of childhood autism. The diagnosis of "infantile autism" is made when the child reaches three years of age (although specific disorders, of course, are noted before this). The central symptom of this pathology is a violation of social behavior. Such children do not ask for hands, do not show interest in the sounds of speech and do not respond to speech addressed to them. Unlike, say, ordinary children, they are not afraid of strangers, they are not afraid to be alone in the room. The child is emotionally cold, indifferent to loved ones, he speaks little, sometimes refuses to communicate at all, and is prone to stereotypical movements. In infants with this pathology, there is no "complex of revival" in response to emotional impact. At an older age, autistic people in every possible way avoid social contacts, show no interest in friendship, communication. Intellectual defects can be significant, or they can be subtle. However, if psychologically suffering from autism is not treated and helped, then as adults they cannot adapt to realities and often become socially maladjusted. Let me emphasize the fact that in this case we are talking about a disease, and not about a silent character.
TO conduct disorders in adolescence includes an extensive group of states, the main manifestations of which are a hostile attitude towards others, towards established rules and orders. Usually such children, mostly boys (although recently there have been quite a few girls with similar deviations), having low self-esteem, compensate for it with a kind of game of "superman". Punishment does not correct them, but on the contrary, it only increases the level of internal aggression and leads to new behavioral disorders. Sometimes truly titanic efforts, pedagogical talent are required to return these children to normal behavior, to re-educate them.
In the group of disorders of social functioning in children, one can distinguish selective mutism. This disorder is characterized by the fact that the child has confident, correct speech in some situations (usually with relatives, relatives) and, on the contrary, the inability to speak, for example, at school. This disorder is different from ordinary shyness and requires qualified medical intervention.
Neurotic disorders that usually begin in childhood and adolescence include tics- involuntary, fast, non-rhythmic movements of limited muscle groups (blinking, twitching); inorganic enuresis Age-inappropriate involuntary daytime or nighttime urination. Enuresis is found in 7% of boys and 3% of girls under the age of ten. Enuresis is diagnosed in children older than five years. That is, until this age, doctors do not talk about the disease.
Stuttering is usually formed between the ages of two and five years, during the formation of speech. Therefore, preventive measures are very important. Since the fear of communication, often inherent in children at this age, can be fixed. And then the muscles of the face are kept in tension. And then a vicious circle is formed: tension - stuttering - tension - stuttering.
Currently, the diagnosis is often made, such as minimal brain dysfunction. Minimal brain dysfunctions are characterized by a delay in the rate of development of the functional systems of the brain that provide certain higher mental functions responsible for speech, writing, reading, counting, as well as the regulation and control of mental processes. The intelligence of such children does not suffer, but they experience significant difficulties in schooling and in social adaptation. Currently, therapies for minimal brain dysfunctions are well developed.
Separately, I will say about psychopathy. Psychopathy- This is a personality anomaly, which is characterized by disharmony of the mental disposition of the individual. Alas, our reality is often a "supplier" of psychopathic personalities. Psychopathy occupies, as it were, an intermediate position between psychoses and neuroses. So, if a person suffering from a neurosis, relatively speaking, harms himself, then a psychopath harms others with his behavior. The treatment of psychopathy is a long, complex and not always effective process. The same can be said about the spiritual rehabilitation of psychopathic personalities. However, what is impossible for man is possible for God.
This is not a complete list of mental disorders that can occur in childhood and adolescence. More pronounced painful mental disorders (children's type of schizophrenia, mental retardation, and others) require timely diagnosis and qualified psychiatric care.
Many children experience various kinds of fears. How serious is this? Is it worth taking any measures, or will these fears disappear on their own with time?
Perhaps there is no person on Earth who does not know what fear is. Fear is inherent in the nature of fallen man, which instinctively fears a threat from without. Numerous scientific studies have been devoted to the topic of fear. There is also a theological argument about this.
What is fear? Psychological literature refers to fear emotion that arises in situations of threat of an individual. If, say, pain is a consequence of the real impact of some dangerous factors, then fear arises when they are anticipated. Fear has many shades or degrees: fear, fear, fright, horror. If the source of danger is uncertain, then in this case one speaks of anxiety. Inappropriate fear reactions are called phobias.
There are fears from cowardice, cowardice. Cowardice can, unfortunately, be vaccinated. If, say, a child is told something like this every five minutes: “do not touch”, “do not climb”, “do not come near”.
In no case should children be locked in a dark room or closet for the purpose of punishment. And also to scare children with an “evil uncle” or someone else, to threaten that “we will hand you over to other parents” or “you will live on the street” and the like. In addition to fear, these pseudo-pedagogical methods will not bring anything.
Psychologists distinguish the so-called parental fears that "migrate" from parents to children. This, for example, is a fear of heights, mice, dogs, cockroaches and much more. This list can go on and on. So these persistent fears can often be found later in children. Distinguish fear situational that occurs at the moment of threat, danger, and personal, the occurrence of which is associated with character traits.
Speaking of children's fears, one can even single out some regularity or stages.
The main time for fears is at night. Therefore, it is very important that the child's sleep is strong and calm. Before going to bed, stay with him for a while, cross yourself and bless the coming dream. Speak softly, softly, calmly. Sing a lullaby or say something interesting and useful. Hug him, kiss him, make him a cozy “nest”, let him take his favorite toy with him to the crib.
If during the day there were some omissions, if you punished the child, then you need to explain why he was punished, forgive everything. In a word, by the evening the situation should be resolved.
Orthodox parents teach their children to pray, the sign of the cross, and the baby will not go to bed until he crosses himself. He knows that he is protected, that he is not alone: the Lord is with him, the Most Holy Theotokos, the Guardian Angel; a host of saints pray for him, for mom, dad and for all Orthodox Christians. God's and parental blessing will protect him.
What to advise parents whose children are lethargic, or vice versa, overexcited? How to help a child, a teenager find peace of mind and maintain mental health as long as possible?
You need to start with the simplest and, at the same time, very significant - the daily routine. If it is not marked at all, then the child, and even the teenager, will undoubtedly suffer from this. Confusion, disorder, lack of system are always fraught with various problems. The absence of a regime often leads to idleness, ignorance of what to do, what to do. One of the main "diseases" of the younger generation is lack of will, volitional disorders. The mode organizes the personality.
For parents and children, in this case, I cite life in a monastery as an example. The monastic charter leaves no time for idleness at all. Prayer, obedience, work, study of the works of the holy fathers.
Along the way, I will add that children, especially urban ones, lack movement, fresh air. But there is an excess of tension: psycho-emotional, informational. One television is worth something.
For myself, I made this conclusion a long time ago: nervous parents - nervous children. Unfortunately, there are few happy families, but there are more than enough problem ones. Quarrels and conflicts of parents, constant “showdowns”, of course, neuroticize the child. During the consultation, I always tell such parents that their home can become a paradise for children, or it can become a hell. So choose which is better.
As treatment and preventive recommendations for neurotic disorders in children, it is possible to suggest the use of baths with the addition of sea salt, coniferous extracts. It is advisable to take vitamin preparations. But the consumption of stimulating drinks (tea, cocoa, coffee, etc.) should be limited. An important role is played by feasible physical labor, hardening of the child, his sufficient stay in the fresh air. Hiking, trips out of town to nature are good, especially with the whole family.
Calm, warm relations of all family members to each other and, of course, to the child are very important, which will create an atmosphere of love in the house. It is necessary to temper the will of the child, accustom him to work, teach him to endure hardships, sorrows, and illnesses. Education is, first of all, love and a worthy example. And most importantly, be always with Christ. Then the child will grow up as a morally healthy person.
interviewed by Polina Melnikova
Autism can't be from stress or vaccinations
Stress and vaccines do not cause autism
Who can diagnose autism?
– In Russia, psychiatrists do this. And in other countries, those who can do it - a pediatrician, a clinical psychologist or a psychiatrist, if he is trained in diagnosing a developmental disorder, do it. In our country, only psychiatrists are taught to diagnose developmental disorders in children.
– If autism is not a disease, then is it a consequence of something?
- We know for sure that this is not because of upbringing, not because the child started playing with gadgets too early. It's not a stress or fear problem.
- But what about the well-known story that mom and dad went on vacation, they left the child with their grandmother, and then the child fell silent?
There are a million of these stories. It's not about autism.
- What was it? Autism has always been, and at this time it manifested itself?
– Each specific case should be considered separately. We must also look to see if there is autism or not. What do you mean, said? I've always wondered what happened before? "He could call our mother mother." The man is 2.5 years old. At 2.5 years old, children build sentences! It seems that it was at this moment that attention was paid to the delay in speech, and not that the child stopped talking.
- That is, autism cannot be provoked by some kind of illness or stress?
- No. Usually, one or another autistic symptom can be traced from 10-11-13 months. Most often, when they talk about “provoked”, something simply appeared that was not noticeable before. Or it became obvious that the child was not developing - he moved, moved, reached a plateau and stood up.
– The scientific community has long ceased to argue about vaccinations: vaccines do not cause autism, they do not cause developmental disorders.
When you don't know the reason, you start looking for it. Usually people are very bad at assessing the risks of inaction. Not to vaccinate is inaction. Inoculation is an action, and people tend to always blame themselves for action, not for inaction.
- Can you name the most striking symptoms of autism?
“The most classic symptom of autism is a reaction to a name. A name is not just a word, it is an invitation to communication. When babies start turning their heads when they are called at 10 months old, the only reason why they start doing this is because they are wildly interested in what their parents want to show them, to say. They are instinctively attracted to interact with their parents.
The essence of autism is when an adult calls, but the child does not turn his head.
Not because he is not interested, but because he is not used to paying attention to it, because he does not have the motivation to study it.
Autism is not a disease or a gift
What surprises you the most about people with autism?
– You know, the only thing that surprises me lately in connection with autism is how important effective social interaction is for the development of people. When I see people with autism, I see distorted, slow and ineffective development, a huge amount of deficit, bewilderment, inability to solve their life needs. I marvel at how complex people without developmental disabilities are because of this social interaction that they have effectively. That's what amazes me.
It would seem, what is social interaction? This, it turns out, is the most important thing that has the deepest impact on us, on our whole life. It's amazing how much a person means to another person.
Here is an example of how the brain of an ordinary person and an autistic person differ.
The video shows luminous dots that move in a certain order, but our brain is designed in such a way that it notices some kind of pattern in the movement of these dots and even guesses from it that, for example, a person is jumping up or climbing somewhere. Our brain is very good at finding these kinds of patterns and sequences in the world around us. It's like people see all kinds of images in the clouds.
Our brain not only manages to do it very well, it also loves to do it very much, it loves to find social things in the world, explore it, think about it, study it, look at it. Our brains are very, very social.
Autism is a violation of this process, when the social world interests a person less, carries less. If this happens to a child from a very early age, then the skills that he should get in the process of interaction are formed much later and more slowly.
This is not a test, this is an illustration of how the brain works. Autistic people can guess all these movements and understand them well, but they do it somehow differently than people without autism. They are bad at finding and distinguishing social signals in the world around them.
Is autism still a disease?
– There is such a thing as “developmental disorder”. This is an inborn problem when it is difficult for a child to acquire various skills. Autism is a developmental disorder, not a disease. Cerebral palsy can also be attributed to developmental disorders, and mental retardation. Developmental Speech and Language Disorder and Attention Deficit Hyperactivity Disorder are developmental disorders.
With autism, the development of the socio-communicative sphere is disrupted. It is wrong to talk about autism not from the standpoint of a developmental disorder, but from the standpoint of a disease or some special giftedness.
- But one of the types of autism - Asperger's syndrome - is precisely giftedness, isn't it? ?
- I adhere to the position and I am ready to justify this, that there are no different types of autism, just the same problem manifests itself in different ways in different people.
The division into separate types of autism - typical, Asperger's syndrome, Kanner's syndrome, childhood autism, and so on, is already outdated. In the European classification, this is still there, in the American no longer. This division is bad, because there are very blurry, fuzzy boundaries. For example, if we take the criteria for Asperger's syndrome that we have now, then the children that Hans Asperger described would not receive this diagnosis, but would receive a diagnosis of childhood autism.
Better to say - autism spectrum disorder. You can clarify about the severity of symptoms - with great severity, with low severity, moderate severity or with intellectual impairment, or, for example, with savant skills. This does not mean that it is some special form of autism, it is a common autism spectrum disorder plus savant skill.
Do not look into the eyes, do not understand humor - myths about autism
They say autistic people don't make eye contact.
- This is wrong. There are those who watch, and there are those who don't. Everyone has a hard time with social interaction. Some autistic people have this look - he just stares. And this is a manifestation of the same problem of disruption of social interaction, but from the other side.
Is the lack of a sense of humor among autists also a myth?
“It's part of the lack of social and emotional reciprocity. It is a problem of responding correctly to social interaction, on the other hand, it is one part of social weakness, because humor is a social thing, it is understood only in the context of interaction with other people. But at the same time, of course, there are people with autism with a great sense of humor.
- Is an autistic person without intellectual impairment able to orient and adapt in such a way that in adulthood he almost does not differ from the norm?
- Yes, it would be easier for him in his life, in his communications with other people, he would do a lot of things, but he would not stop being a person with autism.
- What does it mean - he will always communicate with people through effort?
One option, yes. Or not through effort, but clumsily - to interrupt, not to look at other people during a conversation, not to understand jokes very well; or it's good to do it with one person, but get very lost in communication with the company.
Is he still able to get close to someone?
- Yes, sure. There's a lot of variety here. Have you watched The Big Bang Theory? The creators deny that the main character is a person with autism, but he behaves like a person with autism. It is interestingly shown there that he builds relationships with people differently than usual. And in the series, half of the jokes are related to the fact that the hero is socially awkward and does not really understand sarcasm. He tries throughout the series to understand what sarcasm is. However, he is a very loving and caring person.
Frame from the series “The Big Bang Theory”
A child with autism does not live in his own, but in our world
- A child with autism lives in some kind of his own world - maybe he is comfortable there, why should he be taken out into the ordinary world?
No, he doesn't live in his own world. He lives in our world, in which there is his father and mother, there are his toys, there are children who surround him. In this world there are kindergartens, schools and so on. Autism is not when you live in your own world. This is when you live in this world, but do not know how to interact with it.
Does that mean he needs help?
- Of course, when a child does not develop skills that will allow him to interact with this world. In particular, the most commonplace skill is speech. When a child wants to explain something, tell, ask, in the end, for a chocolate bar or make the sound quieter, then if he has autism, it will be more difficult for him to do this. Because of this, he begins to yell, hit himself on the head or run away.
People with autism give the impression that they live in their own world, but this is primarily because they do not know how to live in the outside world. They lack the skills to make contacts. Their world, in fact, is exactly the same as that of ordinary people.
- If the parents quickly turned on, understood everything, found excellent specialists, they have enough opportunities to implement all this, then how much is it possible to bring the child to the norm?
- There will be development, it happens in 9 out of 10, on the one hand. On the other hand, we do not know the final point of this development. For some, it never stops and moves very actively. Some slowly, slowly approach their ceiling and cannot move on.
Is it completely impossible to understand this in advance?
– In two, in three, in four years in any way.
- How does puberty affect here? Are there always complications at this age?
- Not necessary. Puberty is just one of life's crises, one of the important periods, serious and intense. Like any crisis, it has good and bad sides. For some, this is due to remarkable improvements in the development of organization and attentiveness, with breakthroughs in social skills, because when there is a desire to make friends with a girl, the boy begins to wash and take care of his appearance. Some may have problems with emotional regulation.
– What can be the consequences if a child with autism is not developed?
– This is best understood in terms of human terms, rather than medical ones. It is very hard to live when you are a 30-year-old man with the communication skills of a 1.5-year-old, with the desires of a 17-year-old, with the strength of a 20-year-old and with everyday skills like a 4-year-old. You are locked into yourself and you cannot communicate with others.
You want to live, walk, you want to go to your grandmother. You are 30 years old, you have not seen your grandmother for a long time, you love her madly, but you cannot go to her without mom and dad. This, of course, is a crisis for a person; as a result, it leads to breakdowns or depressions.
When they do not help, then a person is very, very poorly developed, it is very, very difficult for him. And those around him are also hard.
Therapy is not training
- If a child with autism begins to show aggression, is it possible to help him?
- There are technologies that can wean him from this and replace this behavior with the correct, socially appropriate. A friend of mine, a wonderful behavioral analyst, has some interesting cases of this kind of behavior.
For example, she worked with a young man with an autism spectrum disorder who had very difficult behavior: he did not cooperate at all with adults, on the contrary, he constantly sought to control and manage adults, on the street he could approach any person and climb up to to him in personal belongings, pockets and bags, get items from there. It was almost impossible to stop him. Because of this behavior, he did not leave the house for several years, the apartment was divided into two parts.
First of all, specialists established guiding control over his behavior, that is, taught him to cooperate, if necessary for protective purposes, and in accordance with certain rules, applying physical blocking. When control became better, behavioral contracts began to be used with the boy, when for performing certain actions he got access to something very pleasant.
This pleasant - motivational stimulus - for the boy was just bags filled with something, later he was allowed to check the pockets of other people, tear up magazines, study certain brochures that he liked.
All this was hidden until the boy fulfilled certain conditions, and rewards were given to him when these conditions were met. So the boy was taught self-control. Of course, in the beginning it was very difficult and was built by behavioral specialists who literally lived with the boy for a week.
What is remarkable about this story is that the family was able to actively get involved in this work and support it, and now the young man calmly goes out into the street, traveling with his parents. This is an example of the use of such technologies.
- There is an association that a child is brought up like a puppy, the necessary reflexes are developed.
- No. Still, when we train puppies, we teach them to do things that are unnatural for them - we teach them to pee in a tray. What animal in the world pees in a tray? None. Animals pee on a tree or under a bush, wherever it suits them, and then they go.
We teach people to do what they should do - this is not training, this is therapy. Another thing is that with those who find it difficult to understand what they want from them, we work for a long time. We actively praise and encourage them for what they do. This is learning what they should have learned a long time ago.
- And when such a child begins training, he may not even be aware that something is wrong with him? And then, when he succeeds, he probably feels good?
- A holiday, of course. Here is that young man with the bags - he left the house. Previously, due to the fact that he ran, took away bags, he was locked at home, and he did not see the white light. And then he walks like a man, with everyone nearby - and there is a huge sense of self-worth.
Main and secondary
- Are there any autistic traits that a neurotypical child has in a fairly obvious form? Should parents be concerned or is this a common occurrence?
"Do you know what's in there?" A person with autism is likely to have all the problems that people can have: anxiety, bad mood, behavior problems, learning problems, attention problems, hypersensitivity, hyposensitivity, and so on. But these are not specific problems, absolutely anyone can have them, but they are more likely to be in a person with autism.
Often people with autism have a special sensory sensitivity - they do not feel pain, but they feel hot. But the same thing can happen in a person without autism or with other neuropsychiatric diagnoses.
Photo: Timothy Archibald / timothyarchibald.com
Do you know what the topic is? If we see a 4-year-old child with normal development, and he knows the alphabet and numbers, we will not be surprised at all. Well, well done, very good, well, he knows the numbers, he will be smart. We'll forget in 30 minutes that he knows these numbers. But if we see a child who can't speak and yet knows the alphabet and numbers, oh, let's say that's cool! Often these achievements look global in the absence of speech.
The same story with sound sensitivity. If we see a child who is afraid of loud noises and open spaces, but he is perfectly developed, goes to kindergarten, we will not pay attention to this at all - that's unusual, how interesting. And if we see the same thing in a person who does not speak, does not understand, we begin to give this phenomenon a lot of attention, as if it is something important. In fact, it is important that he does not speak, does not understand that it is impossible to negotiate with him.
I like this metaphor: if you cut a clearing in the middle of the forest, then trees, shrubs, and grass will first grow on it, but then the same large trees that surround the clearing will grow, and all other trees, bushes, grasses will die or not grow. But if you cut down a clearing and make it so that neighboring large trees do not grow there, then anything will grow there, and all this will be noticeable only because these large trees did not grow there.
It's the same with social interaction and communication. When there is no good and effective social interaction, there is no communication, everything becomes noticeable: a good memory for numbers, a wonderful memory for dates of birth, for example. We would never attach much importance to this if the person behaved in the usual way. But he doesn't behave like that, and we notice these things.
The Orthodoxy and the World Charitable Foundation is helping the Communication Space project to raise money for renting premises and salaries for teachers. Let's help people with disabilities not to lose such a valuable and unique space in which they can feel comfortable and always get help.
"This is your salvation!"
How to live with a child diagnosed with autism? How to take it? Is the life of such families really a continuous tragedy, cross or punishment (as many people who are not familiar with autism think)?
– In our case, everything began to manifest itself before the age of one: the child was lagging behind in development, demonstrated unusual behavior, and his general state of health worsened. But this became clearly noticeable in the second year of life, when we realized that the child would not “grow out”, as experts told us. Unfortunately, our health care system for monitoring a small child is built in such a way that at this stage doctors are not yet sounding the alarm, mechanisms to help such children (from one to two years old) are not connected. Only by the age of three parents are announced the diagnosis, when it is practically formed, and enhanced rehabilitation begins, but the prognosis worsens.
How to live with such a child? - Very simple. This is not a tragedy, not a cross and not an event after which life immediately goes downhill. It all depends on how people perceive their fate: if they accept what is happening to them and are ready for everything new, then the appearance of such a child is another opportunity to open some kind of door in life.
There are a number of related areas that you get to know, you meet new interesting people. Of course, this does not happen without loss, but if you are ready for a new life, then you quickly accept this situation.
When we first heard the diagnosis, we were told this: your child will have developmental delay or mental retardation at best, autism at worst. I used to read about autism, I was interested in this problem, and I didn’t understand why there would be autism in the “worst case”, but my husband and I were definitely scared at first, there was some shock. Autism was diagnosed in a daughter, our second child (four children in total). We had bright plans for several years ahead, and now we are being told that everything is bad with you and will be even worse. And we began to look for ways out - it took months and years: trying to help our child and others with a similar problem, research activities and trying to teach society to accept people with autism.
It turned out that there are more and more such children, parents, as a rule, have a hard time accepting the condition of their child, society is initially not ready to contact autistic people, there is practically no more or less intelligible system of assistance.
Olga Povoroznyuk:
- Everyone has different stories, on the one hand, but on the other hand, they are quite typical. I have a second child diagnosed with autism, a 13-year-old boy.
By the age of one, you begin to expect communication skills, flashes of intelligence from the child, what we are used to with the first child (the age difference is small). We all waited for that, but by the age of one we realized that our son was behaving somehow strangely: he was looking either at you, or through you, it was impossible to catch a glance, there was no speech. The word "autism" I first heard in the summer of 2004 from my husband. He started typing our symptoms into an Internet search and said, “You know, it looks like we have autism.” The child was then one and a half years old.
Psychiatric care at this age is not provided at all, from the age of four only an examination by a psychiatrist, so at that moment we were only at the neurologist, who confirmed our assumptions. Neurological drugs were offered and nothing more. At the age of two, we had a tomography and, on our own initiative, went to a psychiatrist.
Some doctors absolutely do not feel sorry for their parents - and this is bad: even speaking the truth, one must do it tactfully. And some (either from indifference or from unprofessionalism) inspire hope so much that “everything is fine with you”, that because of this, a whole period of time is lost in inaction.
Our option was the second: we were told that everything is fine with us, it’s just that the child has disharmonious development (although, as I later realized, this is one of the signs of our disease: when simple things are not given to the child, but some complex things, unusual for this age, the child does easily). For example, our son was already working well on the computer at the age of two, although he had not yet spoken at all, there was no dialogue with him. And they told me that I have excessive demands on the child, I must calm down, everything is in order with us. Of course, like any mother, I was delighted to hear this. But six months later I realized that something had to be done. At the age of about four years, we went to the hospital, and there we were diagnosed with early childhood autism. I asked: “What to do next?” And I was honestly answered that there is no help system.
And then this question arose: how to live with such a child? Now I understand this: the fewer questions you ask, the easier it is. But the process of this realization is very complex, it has its own stages, and they are the same for everyone. And the first stage for me - yes, it was a tragedy, because no prospects were visible. And I went into depression, because my husband is at work, the eldest child is in the kindergarten, I am alone with the youngest, he does not communicate, and you serve him all day and think, think about him, and by the evening the brains boil.
This period of acceptance is different for everyone in duration and intensity. I can’t say that I have accepted this situation even now. Unfortunately, I realized late that I had to do something myself - I was waiting for someone to give me an algorithm of actions. And I, like many parents, was terribly indignant that this was not the case. And then I realized that we need to help ourselves: if not us, then who will do it? It is we who are motivated to create this system of help, a system of rapid response at a time when everything is still plastic, when there is the greatest chance to make adjustments.
Americans came to our city, who, however, are dealing with a different disease, and so they told us: “You are now planting and cultivating a tree, the fruits from which your children may no longer get, but still this is a big deal.” We do not know what kind of children our children will have, what great-grandchildren will be, so if you do not have this problem now, but you can help solve it, then this must be done.
As for what some call life with an autistic child a cross or a punishment: I like the words of one priest who told me: “You don’t even understand what a gift God has given you: this is your salvation! He will save you here." If you have been given such a child, it means that you are able to raise him, to help him. That is, to have such a child is an honor.
- We constantly communicate with parents and see that an adult can be considered the person next to whom such a special child can calmly and serenely exist, unable to stand up for himself, really realize where he is, unable to plan his future. If this is possible, then you are an adult and are not in vain trampling the ground.
I, like Olga, believe that it is wrong to call it a cross or a punishment, because people who are waiting for punishment for something think so.
– I read one story where parents came to Israel with an autistic child, and there, at the embassy, they were congratulated with a smile that they had such a child. And the author of this story writes that she has never encountered such a thing in Russia. Why do we have a wary attitude, and parents take their fate very hard?
– Because parents who have a child with a disability do not have sufficient support either from the state or from society. There is no adequate system of assistance to people with mental disorders and their families. A mental disorder is not the same as a physical one. If, for example, a leg is torn off, then over time a slow but sure process of rehabilitation begins, and in case of a mental disorder, the entire body, the entire nervous system, everything that makes the child a person will be affected. The further the child grows, the more problems are added - like a snowball, if left unchecked. The disease itself cannot be cured, but some of the problems that accompany this mental illness can be solved. There is no such system of assistance, it is only in its infancy.
Therefore, in a family where such a child appears, a “black hole” arises that absorbs all resources: material (because commercial medical care is very expensive now), mental (because parents are very worried), temporary s That is, labor - the balance of power in the family is completely changing. Intra-family resources are quickly depleted, unless the family is able to rebuild (and this rarely happens, because the family is not initially ready that they will have a disabled child). This affects relatives, the whole environment: a kindergarten, a school where they try to attach such a child - a problematic focus is formed.
- Doctors are starting to look for the cause in genetics, in parents: didn’t you drink? Thus, parents are indirectly blamed - and many parents are ashamed that they have such a child. Many shock: why me?! And many hide the fact that they have such a child. Only recently, some famous people began to discover that they have children (often already adults or teenagers) with autism or Down syndrome - something has changed in society, it is starting to change. And it pleases.
The state exists in order to have social protection. Now we are taking on its functions, but we want the state to fulfill its obligations.
"Thank you film producer!"
- Have you personally encountered an unpleasant, hurting attitude towards yourself and your children from those around you?
- I probably belong to the category of mothers who are lucky. When Yegor was three or four years old, it happened like this: they say, “the child needs to be raised” - literally a couple of times. But from other families, I know a lot of blatantly tactless, incorrect cases of moral ugliness shown in relation to their children with mental disabilities. Such people have always existed. “You can’t explain to a fool, but a smart one will understand.”
But for me it's still a test when I walk with a child. Maybe there were no negative cases, because something like that is written on my face.
- We know how to build a defense - not everyone can do it.
- My child is always in sight, I keep him in mind: I know where he went, what he does.
Negative situations are sometimes provoked by the parents themselves or those accompanying them. Therefore, I try to always keep the situation under control so as not to provoke others. Because of this, there is a constant internal tension. My husband goes for a walk with his son quite calmly - although, perhaps, he simply does not show his attitude.
“But it didn’t start like this: when my daughter was little, before I left the entrance, I inhaled and exhaled several times, and immediately went to the playground, to the swing, to the sandbox to all the other children. Of course, the child behaves unusually, but the mother completely takes over the function of control: the mother knows what to do, knows how to prevent unwanted forms of his behavior. Over time, she learns to do something such that one day she goes out with the child quite calmly: she is ready, the child is ready - and society begins to change.
- What is the “strange behavior” manifested in: for example, recently we went to the cinema with my husband and Yegor. My son wanted to see this film for a long time, and I saw what motivation is in its purest form: in the morning everything was done quickly and without problems, the first time. During the film, he kept squeezing my hand, because he was overwhelmed with emotions, whispered - he tried to comment on everything that was happening. And after the movie we leave, and I ask:
- Egor, are you happy?
He exhales:
- Yes! I must say thank you to the film producer!
At first I did not understand what he was talking about - well, I must have seen this word somewhere. We go out to the box office, there is a guy from whom we bought tickets. And Yegor suddenly comes up to him:
- Thank you very much!
And the guy's eyes become big ... Of course, he was confused and said nothing.
- My nine-year-old daughter in a cafe goes straight to the waiter and says: “Aunt, give me a salad!” Can cuddle, take the hand and try to kiss. People usually look inquiringly at their parents: if we look serene and say the right words (I usually say: “She doesn’t understand”), then they relax.
I don’t burden people with explanations of what our diagnosis is: it’s enough to make it clear in simple words that the child’s unusual behavior is under the control of the parents, that everything is in order.
And our organizations are doing this: they are trying to explain to society that there are such people with such diagnoses, we know what needs to be done, and we need a little: not to condemn us, to understand that our children will not interfere with anyone, they will not harm.
The load crushes the man
– What is the role of a father in a family where there is a child with a mental disorder? Statistics, especially Soviet statistics, say that in most cases the father left the family. What is the situation now?
- The father is still the head of the family, and the main burden is on him. Men are more worried, because the Soviet system of education laid in them: men should not cry, they are responsible for everything, they protect. The load presses down on a man - they get the most.
Indeed, now men more often stay in families - and not only in those where there is a disabled child.
- My husband showed himself so steadfastly that I, in caring for the child, did not even think how hard it was for him. I had no thoughts that my husband could leave - he loves his son very much. When I had depressive failures, it was my husband who reassured me, saying: “But I’m sure that we will still be proud of him.” The husband takes an active part in the education of his son, accompanies him in some lessons.
But, of course, I know many families where an autistic child is raised by a woman alone.
– Brothers and sisters: how do they live with such an autistic child, how do they interact? Do parents have to build relationships between children or does everything happen by itself?
“Several books could be written about this, several social studies could be done. For a child with a disability, this is definitely good. He immediately receives the whole set of that happy childhood, which many lack. He receives powerful support from the family, receives a set of social roles that he can equal - the adaptive potential is launched, this helps him to integrate into the social relations in which he will have to function in the future.
For brothers and sisters, this is, of course, difficult. They face all the problems that adults have: disapproval of others, condemnation, material problems, emotional problems - tension, parental fatigue. But I would not consider this a punishment or a punishment: we are all placed in different conditions from birth, everyone must overcome them.
When a special child grows up in a large family, this is a powerful rehabilitation factor for parents: they do not get hung up only on this child, as they would if he was alone.
Brothers and sisters, when they are small, do not think that one of them is not like that, they just play with each other - they pull themselves together together, get the necessary experience, grow up as prepared people. (I also had a thesis on this topic: “Rehabilitation of a disabled child in a large family.”)
- Today's teenagers (judging by my daughter, who will soon be 16) have a different attitude towards the presence of a special child in the family. If I tried to dispense information about my son in society (it’s no secret that people often perceive him as a “fool”), then my daughter’s friends and classmates know about her brother. It didn't even occur to her that he should be embarrassed. She invites friends home, and Yegor can behave strangely: he runs out - new people have come! He knocks on the door, asking to be let in. And the daughter normally treats everything as if she were an ordinary brother. I quietly leave them alone at home since she was eight years old, no problems arise.
Foundation, "School of Parents", "Resource Class" - what are they for?
“Our foundation is trying to help the family at an early stage. We are trying to ensure that parents become full-fledged participants in the rehabilitation and adaptation of the child. We think about how to help older children in vocational guidance, arrange their independent or accompanied living. We communicate with specialized organizations, ministries, which react quite vividly to our problems, support us, which gives us hope that our children will still live their lives with dignity.
We invite parents to our "School of Special Parents": we tell what is happening with their child, why it is happening, what forms of assistance exist today, we provide psychotherapeutic assistance, we consult ...
- When parents have young children, they still hope for a full rehabilitation, they believe in the possibility of bringing the child back to normal, so they are engaged in various commercial structures. And they come to us with teenagers and adults who are already over 20.
"DORIDA" is a Voluntary Society of Parents and Children with Autism. We worked on a whim, without any "business plan". And now I sit down and think: what do I need? If I need it, then other parents probably do too.
An important layer of our work is socio-cultural rehabilitation. We arrange cultural and leisure events, cooperate with the Youth Theater, Cultural Centers, and various artists. Every month we go to the cinema, visit the temple.
DORIDA and friends. Olga and Yegor Povoroznyuk - bottom row, far left
For example, we visit Gosfilmofond, they provide us with a whole hall. This is necessary so that the child finds himself in a new situation - a natural environment is created for practicing behavioral skills. My son and I go to the cinema, but we still try to go to an early screening, when there are fewer people, so as not to disturb them, because my son likes to comment on the film aloud. And when we are provided with a hall, mothers can relax and calmly explain to their child the rules of behavior in the cinema.
– Our organizations are jointly working on the “Resource Class” project, in a school with a wonderful principal. Since September of this year, several children with autism have already started learning in a special environment. There will be a separate program and support for such children. World practice shows that most of the children with autism in such a special environment can get an education in order to subsequently function in society independently. We started this joint project a year ago, we are the first in Yekaterinburg to move this process forward.
The resource class is such a resource of opportunities, not only for children with autism, but also for training young professionals: they learn to work with the vast majority of disorders in the mental development and behavior of children. This school with a resource class will become an internship platform where young professionals will have an internship. According to WHO, up to 30% of children in the world have mental or mental developmental disorders, so this experience for teachers and parents will be of great help.
From September 1, 2016, each school or kindergarten must have adaptive learning programs, that is, a parent can come with their child to any kindergarten, any school, and they must build the educational process there as the child needs. Therefore, where a center like ours appears, both children and specialists ready to work with such children appear there.
– Today, the resource class is the only possible way for our children to exist in schools. We have playgrounds not only in correctional schools, but also in secondary schools: personally, for example, I can go to a school according to my residence permit and leave my Egor there, and they don’t have the right to refuse me.
It is very important to make it clear to the parents of other children that a special child is not a disadvantage for learning, since he is under the supervision of an adult tutor. And talk about the pluses: the presence of special children among neurotypicals contributes to the development of those moral qualities and values that make a person a person.
Therefore, if parents want their children to be more tolerant, merciful, to gain additional life experience, then inclusion is the most suitable situation.
- And when the parents themselves become old and sick, then their children will be next to them, who already have experience of communicating with those who need help, on whom you can rely.
Sometimes parents with autistic children are asked to leave the temple
- Why do your children attend the temple in the city of Berezovsky (a suburb of Yekaterinburg - ed.)? Why not any other? It would seem that believers should be tolerant of special children?
– This is such a stereotype: “believers should”. People, even believers, are all different, there have been cases when parents with autistic children were asked to leave the temple. So we decided not to train our nerves. God brought us to the church of the martyr John the Warrior in the city of Berezovsky. There they organized adapted services for us - these services are shorter, after we are always invited to the refectory: for many of our children this is a particularly pleasant moment, they are waiting for it. We communicate with the priest there, among ourselves.
Of course, not all children understand what they are doing there, what kind of place it is, but the condition of the mother is of great importance here. I myself confessed for the first time two months ago in this church, it was difficult for me, I was not a church person, but thanks to this cooperation I began to go regularly with my child and with my husband - this unites. You can’t tell everything to your mother or husband, but there are things that oppress you - we already have several mothers who constantly go and confess, and take communion. I think they need it.
Ordinary parishioners also come to these services, they know about the peculiarities of our children. Father Vadim Zhurilin works with us: when April 2 was the day for the dissemination of information about autism, he held conversations with parishioners on this topic, our leaflets about the disease were quickly distributed among the parishioners. And now the attitude towards us is different: the mothers have relaxed, because the parishioners are used to our children, and I think that when they leave the church, they will endure this tolerant attitude towards the child they see in the store, on the bus, they will tell about it at home. And it diverges like a wave from a pebble thrown into the water, and the attitude in society changes.
Changes in society begin with the family: when the parents themselves accept their child not as an outcast, not as sick, but as a child with special needs, but no worse than others, then changes will begin in society. And visiting the temple contributes to this - they don’t condemn there, they give spiritual support: you are not guilty of anything, what is the punishment? - this is your salvation!
- I appeal to all parents who have children diagnosed with autism: come to us, unite with each other, get involved in this work to create a system to help such children - and you will not have time for depression, you will always be busy with interesting work everything will change around you!
I'm not a fan of wandering around the elders, but we still went to Father Vlasy once, fortunately, not far away. What can you do to help a child?
It was about five or six years ago. Father Vlasiy treated him to sweets and reproached my husband and me - they say, there was nothing to conceive a child in fasting. The husband was surprised - he knew for sure that in those days there were no fasts.
- So, on Wednesday or Friday, - Father Vlasy confidently stated.
The husband tried to object (THAT day was neither Wednesday nor Friday), but nothing came of it - Father Vlasiy was convinced of his own rightness. I didn't even want to hear anything.
I have long forgotten about that trip, but yesterday a friend called me and told me that her friend went to see Father Vlasiy with her son, who is autistic. I tensed up.
- And what did he say?
- He said that the problem is that the boy was conceived on Wednesday. But, imagine, he definitely was not conceived on Wednesday! This family is more than pious, they keep all the posts, on Wednesdays and Fridays they have no intimacy!
- She told Father Vlasy about this?
- I tried. She was at a loss, because she observes all fasts very strictly. But Father Vlasy did not listen to her.
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That's why I don't follow the elders.
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I also remember how "kind people" strongly advised me to take Ephraim for a reprimand, to the TS Lavra. Let's go with the whole family - what if it helps? Asking was just born then. I fed her, left her in a stroller with the elders, and decided to stand in the temple with Ephraim (for the good of the cause, just in case, so that they would “chastise” me, otherwise you never know))).
There were a lot of people in the temple, there was simply nowhere to stand. Some shook, some howled, some grunted and screamed. But my Ephraim stood calmly and looked in bewilderment at what was happening, from time to time looking inquiringly at me. Next to us stood a young woman in a long sundress with bare shoulders (then it was summer, hot). Some especially righteous ones gave her scornful glances, but she courageously did not react to anything. The woman was with a boy, a little older than my Ephraim. The boy stood and methodically shifted from foot to foot, occasionally observing what was happening from under his brows, and I asked in a whisper: "autism"? She nodded.
A little later, we got to know her better. Her boy was less "heavy" than ours, but the behavior was more complicated. She, like us, tried everything that was possible, and decided to take him to a reprimand. But no miracles happened - our boys only shuddered from the wild cries of people standing in the hall and were even more nervous from the malicious and contemptuous looks that they were "rewarded" by the pious standing next to them, who came to the reprimand. The children huddled up to us in fear. We defended this and the next "sessions" to the end, but neither Ephraim nor the other boy had any changes.
Some time later, I raised this issue with other Orthodox mothers of autistic children who also went to a reprimand, after which the behavior of their children did not change at all, so I can say with confidence that for autists, the reprimand is of no use.
Neither a scolding in the temple, nor "chastising" the parents of an autistic child for allegedly having conceived a child at the wrong time, will not help an autistic person.
Only love will help. But love is a luxury these days. Like the parishioners, so do the priests, or even the modern elders - a luxury. Which one does not want to waste on the poor or the sick. After all, it is much more pleasant to reproach, teach, express indignation or even contempt for sinners to an innocent autenka and his parents ...