When the world sounds different: how specialists work with ASD in children
Childhood autism is often surrounded by understatement, which is why parents are often left alone with their worries. The behavior of such children may seem unusual or incomprehensible: someone avoids eye contact, someone goes into repetitive actions, and someone, on the contrary, impresses with the depth of interests and attention to detail. Understanding these features is the beginning of the path to acceptance, support, and development. For more information, see the Izvestia article.
When the world sounds too loud
Daria Pereverzeva, a leading researcher at the FRC RAS MGPPU, told Izvestia that autism spectrum disorders represent a group of neuropsychological developmental disorders. They are characterized by qualitative deviations in social interaction and communication, as well as a limited, stereotypical and repetitive range of interests and activities.
— The International Classification of Diseases of the 10th revision described several separate diagnoses — childhood autism, Asperger's syndrome and atypical autism, — the expert notes.
However, over time, researchers and clinicians abandoned this differentiation and combined these conditions under the general concept of "autism spectrum." This decision is due to the fact that the clear criteria for differentiation turned out to be blurred, and the clinical manifestations were too diverse. Pereverzeva emphasizes that the term "autism spectrum" itself turned out to be more accurate and productive.
"It highlights the diversity of clinical manifestations and allows us to identify different profiles of disorders, overcoming the problem of heterogeneity of the clinical picture," she explains.
Speaking about the so-called severe forms of autism, Raisa Romanova, a junior researcher at the FRC RAS MGPPU, notes that difficulties in such cases are usually noticeable from an early age and are comprehensive.
According to the expert, children may not use gestures, do not respond to names, avoid eye contact, and social interaction is often minimized. Motor stereotypes, rigid attachment to routine, and strong reactions to any changes in the environment are often observed in behavior.
Romanova calls Asperger's syndrome a separate profile, which is characterized by a different combination of features. The main difficulty is not related to the presence of communication as such, but to its social quality.
— A child can speak in a monologue without noticing whether the other person is listening, without understanding jokes, irony and hidden meanings. At the same time, the desire to communicate remains, but the implementation looks strange and one—sided," the specialist explains.
In atypical autism, Romanova continues, the symptoms are often milder or appear selectively.
"A child may have serious difficulties in social interaction and flexibility of behavior, but at the same time relatively developed speech, or, conversely, delayed speech development and sensory features while communicating well," she explains.
It is this unevenness and non-obviousness of the manifestations that often cause a later diagnosis. The expert emphasizes that such descriptions should be considered only as conditional guidelines.
"Two children with similar external manifestations may have different reasons for this behavior and need completely different help,— Romanova notes.
Polina Tolstova, director of the Anton Resource Center, told Izvestia that the situation around autism in Russia has changed dramatically over the past decade, and in two different directions at once — in public perception and in the systemic availability of care.
According to her, one of the key shifts has been the process of removing stigma.
— Autism has emerged from the shadows: they talk about it in the media, it is shown in films and TV series: "The Outsider" and "The Other". This is no longer a "rare and shameful disease," but part of the spectrum of neurodiversity, Tolstova emphasized.
She added that parents began to notice the developmental features of children earlier and actively seek help. In recent years, the level of public knowledge has also changed: most people already understand that autism cannot be contracted and that it accompanies a person throughout life. Now, according to her, there is a growing interest in the topic of autism in women and girls, as well as in evidence-based care practices.
Significant changes have also taken place in the field of early care: early intervention services have emerged that can detect autism spectrum disorders at an early stage; a generation of specialists has grown up who understand what autism is and use evidence-based methods of care, including AVA therapy, sensory integration, cognitive behavioral therapy, communication and skills training.
Tolstova highlights the changes in the education system separately. According to her, the law on inclusion has begun to work: children with ASD are increasingly attending regular schools and kindergartens, are being accompanied by tutors, and parents have become more informed and better guided in their children's educational routes.
She called another important achievement the fact that over the years a powerful parental and professional community has developed, which creates services, shares knowledge and defends rights. According to her, foundations and non-profit organizations have become real competence centers around which a support system for people with autism and their families is being built.
Another language of communication
Artur Valerievich Khaustov, director of the FRC RAS MGPPU, and Olga Dukhanina, a teacher-psychologist at the FRC RAS MGPPU, told Izvestia that specialists use functional behavior analysis to work with difficult behavior of children with ASD.
Work with difficult behavior begins with its accurate and observable description, after which an analysis is carried out to identify the function of behavior: for example, avoiding pain or striving to control the environment when the child is trying to make what is happening more predictable. After determining the function of behavior, an intervention plan is developed: adaptation of the child's conditions, the formation of skills, the deficiency of which provokes the appearance of difficult behavior.
—Dealing with a symptom without understanding its cause and developing important functional skills that a child lacks is often ineffective and sometimes harmful," the experts emphasized.
Experts pay special attention to self-stimulating behavior. It is considered one of the most difficult to correct, because it is supported by the inner feelings of the child, and its direct suppression can lead to the emergence of new, less acceptable forms of behavior.
A separate issue is the difference between the everyday concept of "caprice" and reactions associated with sensory overload or the inability to report discomfort. Because of this, a conscious choice of "bad" behavior is not applicable to children with ASD.
— Children behave well if they can. If a special child cannot behave "well", this is not a choice, but a signal of a lack of skills. It is important to teach a child communication skills, including using alternative communication tools, to train his tolerance for expectation or rejection, and to develop self—regulation skills," they recalled, quoting psychologist Ross Green.
Hypersensitivity to sounds can upset a child, and tactile, gustatory, and olfactory sensitivity can lead to highly selective eating. Experts separately pay attention to the problem of reducing the pain threshold in children with ASD.
"Situations where a child has been injured but has not reported it can be life—threatening, so it is very important to teach a child to report bumps and falls, including using alternative means of communication," the experts added.
Early help is a great future
Raisa Romanova, a junior researcher at the FRC RAS MGPPU, said that the critical importance of early diagnosis and initiation of classes in autism is explained by the unique state of the child's brain in the early years of life.
— This is a period when neuroplasticity — the ability of the brain to form and rebuild neural connections — is as high as possible. Between the ages of two and about seven, the brain is actively developing neural networks," said Romanova.
According to her, we are not even talking about academic knowledge like understanding letters or numbers, but about the basic prerequisites for development: pre-speech skills such as pointing, eye contact and making requests, as well as understanding spoken speech and developing one's own speech, the ability to share interest in one object with another person.
At the same time, behavioral regulation skills are being formed: the ability to wait, switch between classes, cope with rejection, as well as the basics of self-service. All this together creates the very starting platform on which further knowledge of the world, education in kindergarten and school, and ultimately the ability to live independently, will be built.
— A child who cannot express his needs with words or gestures inevitably faces frustration, which often results in problematic behavior: tantrums, aggression, or complete self-isolation. By giving the child a means of communication, we provide him with a tool for interacting with the world, thereby reducing anxiety and creating a basis for learning," explained Romanova.
Everyone has their own route.
Daria Pereverzeva noted that in Russia, the diagnosis of ASD falls within the competence of a psychiatrist, but in practice, a team approach is increasingly required.
—A competent assessment of the condition requires an integrated approach, and then psychologists with standardized diagnostic tools come to the aid of medical specialists," she stressed, adding that this allows avoiding both hyperdiagnosis and underdiagnosis and making a more accurate prognosis of development.
According to Pereverzeva, at the diagnostic meeting, the specialist evaluates a whole range of parameters — from the features of eye contact and verbal and non-verbal communication to understanding the social context, emotional states and sensory characteristics.
"This results in an assessment of three main domains specific to races: communication, social interaction, and features of interests and activity," she notes.
The expert draws attention to the fact that a psychiatrist is rarely a first-line specialist, therefore, the general awareness of parents, pediatricians and educators is crucial for the early detection of ASD. The difficulty of diagnosis is also related to the fact that different developmental disorders may have similar manifestations.
— Often, the same child may have symptoms of two or more disorders, then we are talking about the problem of comorbidity, — explains the expert, noting that combined disorders aggravate the course of autism and worsen the prognosis.
In the professional environment, according to her, the terminology itself is also changing. The focus is shifting from the concept of "treatment" to support, correction and adaptation, since autism is considered not as a disease, but as a feature of the development of the nervous system. The purpose of the help is not to "cure", but to help a person realize their potential and develop the skills necessary for independent living, the specialist explains.
According to Khaustov and Dukhanina, in practice, experts often recommend about 20 hours of comprehensive correctional and developmental work per week, and the amount of assistance increases with the severity of the developmental delay. Special attention is paid to setting goals.
Experts noted that the goal of "talking" is considered incorrect today and it is much more accurate to formulate the task as the development of specific communication skills.
Not isolation, but concentration.
Polina Tolstova notes that today there are vibrant foundation projects, active blogs and forums, but there is no single, official and scientifically verified information campaign designed for the whole society — neighbors, teachers, doctors in clinics and employers.
"Educational assistance is on the rise, but it is "insular," Tolstova emphasizes, which is why myths do not disappear, but "survive and mutate into new interpretations," which leads to the emergence of unproven and expensive methods of "treating" autism.
Tolstova calls tutoring one of the most vulnerable points of the inclusion system. A tutor is a key figure for the successful education of a child with ASD in school, but in practice this role is often performed by student trainees or parents of other children without special training.
— There is no career path, decent pay, supervision. Schools don't understand how to work with a tutor, and parents have to pay extra for him. The system works on enthusiasm, not on system solutions," she explained.
According to the expert, serious issues remain in the field of psychiatric care.
— Firstly, many psychiatrists in the regions still have a "punitive" model: isolation, severe antipsychotics as the first line of help. Secondly, there is a catastrophic shortage of specialists working with adults with ASD. Concomitant conditions — anxiety, depression — often remain without help or are treated incorrectly," Tolstova added.
Separately, she draws attention to the most dangerous myths that continue to influence attitudes towards autism. One of them is the idea that autism is a disease that needs to be cured, although the task is not to "cure", but to adapt the environment and learn skills.
No less harmful, she calls the myth that the absence of oral speech automatically means intellectual disability.
"The absence of speech is not equal to a violation of intellectual development," the expert emphasizes, adding that this stereotype often justifies paternalism and the refusal of education and development of an entire group of people.
The third persistent myth, according to Tolstova, is related to the accusation of parents.
— "The problem of insufficient education" is still mentioned in clinics and playgrounds. This shifts the blame onto the parents and blocks the path to early help. The myth has transformed from a "bad" upbringing to an "insufficient" one. This traumatizes parents even more and feeds feelings of guilt," says the director of the center.
Polina Tolstova added that the ideal trajectory for a person with an autism spectrum disorder is the opportunity to live according to their own choice in the most inclusive and supportive community, where there is timely help from competent specialists.
According to her, the contours of this trajectory may be different, but they are always based on the right to choose — assisted living, where it is essential that we are not talking about neuropsychiatric boarding schools, but about an environment that preserves human dignity and autonomy, employment: in IT, analytics or design, and protected workshops, and flexible forms of employment — and leisure time with tutor support or in adapted groups.
— The main gap for the implementation of this trajectory is the lack of a state system of transition and support in adulthood. All the infrastructure, benefits, and techniques come to an end at the age of 18. There is no interagency interaction to build an individual route for an adult. There is no funding for assisted living and employment programs at the state level. An adult with ASD is faced with a choice: to be a burden to aging parents or to get into the PSNI system, which most often cripples rather than develops, Tolstova said.
Summing up, the director of the center notes that in recent years the society has passed an important stage.
— We have gone from "autism does not exist" to "autism exists". Now we have to go from "helping children" to "living a decent life throughout our lives." And this requires not only parental initiative, but also systemic government decisions," she concluded.
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