"The Question of a Broad Inclusive Culture": Specialists on the Adaptation of People with Autism Spectrum Disorders

Director of the Federal Resource Center for the Organization of Comprehensive Support for Children with Autism Spectrum Disorders of MSUPE Artur Khaustov.

- On April 2, the world celebrates the Day of Dissemination of Information on the Problem of Autism, which was established by the decision of the UN General Assembly in 2007. Please tell us about this disease, how does it manifest itself?

- First of all, I want to draw attention to the fact that in the case of autism, we do not use the term "disease". It is appropriate and correct to talk about a disorder - a developmental disorder that is comprehensive. At the behavioral level, autism is clearly manifested in the form of communication disorders, social interaction and stereotypical (monotonous) behavior.

Communication disorders can manifest themselves in the fact that the child not only does not own speech, but also cannot interact non-verbally - with the help of gestures and facial expressions. It also happens vice versa, when the child's speech is present, but he does not use it for communication, to communicate his needs, to express emotions, feelings. If we talk about adults with "high-functioning" autism, then, of course, they use speech consciously. But at the same time, it is still difficult for them to maintain a dialogue, to start and end it correctly. The manner of communication of such a person may look unusual, awkward.

Difficulties in social interaction can be associated with a lack of interest and motivation in children with autism spectrum disorders (ASD) to cooperate with adults and other children - to play, other types of joint activities. It also happens the other way around – a child with ASD really wants to communicate with other children and with adults, but at the same time shows excessive activity or does it in the wrong way. This is often disliked by peers.

• A man with Asperger's syndrome draws in a workshop
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Stereotyped behavior manifests itself at different ages in different ways. For example, in children, this may be a desire to monotonously bang a gymnastic stick on a wall or battery, in an adult with "high-functioning" autism - in a fixation on one area of interest that does not develop or expand. Let's say a person is keen on subway schemes, he knows all the lines, all the stops. But at the same time, stereotypical fixation on specific interests does not contribute to the application of this knowledge in everyday life, for example, in order to move around the city along the chosen route. Stereotyping can manifest itself in the fact that a person with autism goes only to the same store, always travels along the same route, dresses in the same things, etc. It is very difficult for him to adapt to a deviation from these habitual ways of acting, scenarios, unlike ordinary people. This is largely due to a lack of flexibility of thinking, increased anxiety, sensory features of a person with autism.

What do you need to remember when communicating with people with ASD in order to establish communication?

- If we talk not about pedagogical work, but about communication with adults with ASD in everyday life, then you need to try not to be intrusive for them. It is better to speak calmly, measuredly, quietly than usual. Do not get too close, try to establish eye contact, if the interlocutor does not look you in the eye - this can be unpleasant and uncomfortable for a person with ASD. To maintain communication, it is advisable to talk about a topic of interest to him - then communication will be more successful.

- In recent decades, experts have been talking about a real "epidemic" of ASD. Has the number of such cases really increased or have they simply learned to diagnose them correctly?

- Yes, both in the world and in Russia, the prevalence of ASD is growing. According to WHO statistics, ASD occurs in one child out of 100. In Russia, in the period from 2017 to 2022, the number of students with ASD in the education system increased approximately threefold - from 16 thousand to 45 thousand.

- And what are the advanced methods, if not treatment, then at least correction of autism?

- Such methods are conditionally divided into medical and psychological-pedagogical. Medical is not aimed at treating autism, but at influencing its symptoms or related disorders. You can, for example, activate cognitive functions in a child, social activity or, conversely, reduce the manifestations of undesirable behavior.

A huge role in the correction of autism is played by psychological and pedagogical methods... registers of which are formed in foreign countries. These include behavioral and cognitive-behavioral interventions, a visual support system, structured learning methods, the use of complementary and alternative communication tools, and many others. Many of these methods are used in our country after the necessary adaptation. However, the range of such practices needs to be expanded. This is due not only to the specifics of the Russian education system, but also to the fact that the current arsenal of tools does not meet all the needs of students with ASD and brings only a small part of people with this developmental disorder to the level of complete socialization.

Our center is working to adapt foreign methods with proven effectiveness to Russian conditions and requirements, develops new practices for working with ASD together with regional partners, conducts research on their effectiveness. In addition, our specialists are developing and testing new diagnostic tools for the organization of psychological and pedagogical support for children with ASD in the general education system.

It is important to note that hundreds of students who receive psychological and pedagogical specialties are practiced annually on the basis of the FRC MSUPE, and hundreds of specialists from various regions of Russia are trained in advanced training courses. Naturally, the main task in the implementation of such programs is to teach the application of developed and tested practices that have proven effectiveness.

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Head of the Direction of Socio-Cultural Integration of the FRC MSUPE Evgeniya Khilkevich.

What does it take for a person with ASD to be able to adapt to social life?

The fact is that a child with autism very poorly assimilates social subtexts, the concept of subordination, social roles, etc. But he can literally learn them through repeated explanation of social situations and scenarios. In fact, the child remembers a set of social algorithms, which he then applies in real situations. It teaches what gestures, facial expressions of people, tone of voice mean. As a rule, with autism, the holistic perception of objects still suffers, but such children perceive individual details very well. That is, a person with autism can be very successful in work that requires attention to detail, even very routine and boring for an ordinary person.

- How large is the percentage of children with ASD who subsequently manage to integrate into society?

- The chances of this grow if you start working with such a child early, although, of course, all children with ASD have very different starting opportunities. But in general, studies show that when children began to study before the age of two, by school age there were up to 50% more children among them who mastered verbal speech than among children who did not receive support so early. And also among this group, who received intensive early assistance, there were significantly more children who were then able to go to school for a general education program.

- Usually, when it comes to autism, they talk about children. And what happens to such people with age? Are there any studies on older adults with ASD?

- Unfortunately, there are no such statistics in Russia yet, so it is difficult to say what percentage of people with ASD are employed. The fact is that few adults in our country have such a diagnosis at all. Until 2017, after the age of 18, patients diagnosed with early autism were changed to some other - often to some disease of the schizophrenic spectrum. Because for a long time it was believed that autism was a childhood disease, a precursor to schizophrenia or another psychiatric diagnosis. If ASD was accompanied by intellectual disabilities, then the person changed the diagnosis after 18 years to mental retardation.

However, in Western countries, complete statistics on ASD have been collected for quite some time, we can use these data. So, in the UK, 32% of people with ASD are employed, in Canada - 14%, in Australia - 28%. And this is in countries where the diagnosis of ASD began to be made in the 1980s and there is a system of support for such people. However, employment rates are still very low.

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It's too early for us to talk about the numbers. In 2012, the concept of "inclusive education" appeared at the legislative level in Russia, and in 2016 new federal state educational standards for children with ASD appeared. It can be said that it was from this moment that the education system began to take into account the interests of such children. Now children with ASD are already massively included in the education system, as the figures of the monitoring that the FRC conducts annually tell us, someone is already moving to high school. Plus, an active parental community has been formed.

Now, when in general the issue of school education for children with ASD is being solved at the system level, the issue of admission of young people with autism to colleges has become acute. They can get a specialty and be quite professionally wealthy in the future, but for this it is necessary to specially organize the learning process, as well as accompany such a person at the stage of employment. And this is a matter of a broad inclusive culture. We are now on the threshold of these changes.

Leading researcher of the scientific laboratory of the FRC MSUPE Elizaveta Davydova.

How early can autism be diagnosed? In 2020, a study was released that said that markers of autism can be detected even at the stage of intrauterine development.

It is quite difficult to describe the "mandatory" set of symptoms of autism, since they are very diverse and can be present in behavior in different combinations. The younger the child, the more difficult it is to conclude that a particular symptom is indicative of autism. At the same time, there is a set of "red flags" - behavioral features that you should pay attention to and, if there are many such manifestations or they are very pronounced, contact a specialist. Such signals are communication disorders, stereotyped movements, repetitive behavior and increased sensitivity to external influences.

Therefore, parents do not need to wait for final conclusions regarding the diagnosis, work with the child should begin as soon as some violations of sensory reactions appear, so as not to waste time.

- Thespecific causes of autism are not yet known to science. However, various risk factors are being investigated. How great is the contribution of heredity in this regard?

The contribution of heredity is very high in any disorder, be it diseases of the heart, gastrointestinal tract, etc. The field of autism spectrum disorders is no exception. In this case, it is also appropriate to talk about a genetic predisposition, which can result in a disorder under the influence of the environment, a complex of factors.

In early human development, there are critical periods associated with major structural changes in the brain. It is during these periods that the risk of developing ASD under the influence of some adverse conditions is high - it can be an infectious disease, and psychological trauma, and poisoning, and poor ecology. Therefore, it is necessary to very carefully monitor the conditions in which the child is in the first three years of life.

- On the Internet, there are mentions of attempts to treat autism with stem cells - does this practice have any medical validity?

- This is generally outside of clinical practice. Yes, scientific research of this kind is underway, but they give very diverse results - from positive to extremely negative. The use of such technologies on humans is still very, very far away, while there are not even appropriate clinical trials. So such "proposals" carry a huge risk for children.

- There is evidence of a link between autism and a deficiency of special proteins, beta-casomorphins, which are found in human milk, but are absent in cow's milk. What do you think about that?

- In this case, more detailed observations are required. There are no scientific studies convincingly identifying the relationship between artificial feeding of children and the increase in the number of cases of autism. On the contrary, now we are observing a trend towards natural feeding and a decrease in the use of mixtures, but at the same time the number of children with autism is still growing... Although for some children the transition to artificial nutrition can serve as a trigger for the development of autism, such individual reactions also cannot be ruled out.

In general, if there is a predisposition, any negative factor can trigger the development of ASD, it makes no sense to look for specific reasons. It is simply necessary to adhere to the so-called protection policy for early childhood and the period of pregnancy. This policy includes proper nutrition, the creation of a favorable psychological atmosphere and careful monitoring of the child.