Autism spectrum disorders - ASD

It is not possible to determine the exact number of people with ASD, but it is estimated that in the general population their percentage is about 0.002%, of which 4 out of 5 are men. For women, ASD manifests itself quite unusually and is difficult to diagnose. The disorder is diagnosed as early as in children under the age of 3. The Observation Protocol for the Diagnosis of Autism Spectrum Disorders (ADOS-2) and the Screening Test for Autism (STAT), combined with developmental assessment and parental information, can be used as early as two-year-olds. They allow testing of skills such as the ability to imitate movements. Also used are a standardized clinical interview designed to diagnose autism spectrum disorders in children, adolescents and adults - the Autism Diagnostic Interview - Revised (ADI-R) and the PEP-3-PL (Psychoeducational Profile) test. Trained and experienced psychologists are authorized to conduct the tests. Diagnosis is confirmed by using the CARS Childhood Autism Rating Scale. It is also used to determine the degree of the disorder and monitor it over time.

In younger children, it is possible to identify certain behaviors that may indicate ASD, such as: the child does not point objects with his fingers, does not show his gifts to others, does not respond to his name, does not follow with his eyes objects that a parent shows, for example, does not imitate - does not reciprocate a smile, does not operate with facial expressions, and does not maintain eye contact with anyone. If you observe worrying symptoms in your child, it's not worth putting off consultation with a specialist. You can also take the M-CHAT-R screening test, which is free and available online. It can be used to test children from the age of 16 months. It allows you to quickly catch worrying signals, but you should bear in mind that it can give a false positive result. The final diagnosis is always made by specialists [1]. The causes of ASD are unknown, so there are no strategies to prevent the disorder. Current knowledge indicates that genetic and environmental factors influence the onset of the autism spectrum. Currently, experts are grappling with many issues regarding the diagnosis of autism spectrum disorder. They disagree on the criteria for distinguishing subgroups of the disorder and whether it makes sense to create them at all. They also cannot come to a consensus on who should make the final diagnosis [1].

ASD impairs verbal and non-verbal communication, and negatively affects social interactions. Symptoms can appear at different ages, and their number and severity vary considerably. The diagnosis is usually made before the age of 3. People with ASD do not like change, either in their environment or in their established daily routine. They manifest unusual reactions to the environment and sensory experiences, and may constantly repeat aimless or ritualistic movements, body postures. If rigid, established behavior patterns are disrupted, tantrums may be the response [1].

Most people with ASD use speech, but some children send verbal messages - echolalia, that is, they repeat sounds they have heard before. Those that do speak often have problems with the correct choice of sentence parts, as well as the use and pragmatics of language. They may also give the impression that they live in their own world. They do not initiate social situations - the presence of other people is completely unnecessary to them. They only use them for their own purposes such as getting food and treat them in an instrumental way. They do not understand that in order for communication to occur, it is necessary to exchange information, including giving non-verbal signals and expressing personal views. The range of cognitive abilities of people with ASD is very wide and includes both low and high functioning individuals. The latter, despite demonstrating normal levels of intelligence, also experience many difficulties, such as in understanding non-verbal communication, other people's feelings, their mental state, and jokes [1].

People with autism spectrum disorders have a limited range of interests, but often extraordinary ones. There is one special group of people among them - geniuses. They possess extraordinary talents, such as musical, mathematical or artistic. These isolated abilities are amazing and attractive to observers, but they have little meaning to the person with ASD. Despite their talents, they go on to have difficulty sustaining conversation or understanding social cues [1].

It is important to be aware that some people may develop autism spectrum development disorders at a later age. For at least the first 2 years of life, the child develops normally, just like his peers. Around the age of 5-6, his developmental regression begins. It loses acquired language and social skills, and often adaptive, motor and play skills. Problems with control over urination and defecation also appear. Functional abnormalities develop, such as qualitative impairments in social integration and communication, restricted, repetitive and stereotyped patterns of behavior, interests and activities, including motor stereotypes and mannerisms. Eventually, their behavior becomes similar to that of people with autism spectrum disorder [1].

All people with ASD have varying degrees of problems with communication, which is integral to life and central to human experience. It enables the exchange of ideas, the acquisition of skills and, above all, thinking, experiencing emotions, expressing desires and experiencing. For healthy people, it usually comes naturally, with little effort, while in ASD communicating is extremely difficult. Although they hear sounds, they do not understand them. Often they can't speak them correctly or communicate the content through other forms, such as body language. Therefore, just being with people is uncomfortable for them [1].

We gain insight into the inner lives of people with ASD through high-functioning people with autism spectrum disorder who spread the word about the disability, such as Temple Grandin. She describes the overwhelming sense of isolation and being different, as well as the frustration of not being able to speak, despite knowing the language. She also points out the hypersensitivity of the senses - for example, ordinary sounds are too loud, and traditional light bulbs glaring in the eyes, which cause withdrawal from social interaction, as well as tantrums. He also mentions difficulties coordinating complex motor activities. He feels emotions more like a child than an adult, and does not grasp emotional nuances. She explains that she understands what awe of nature means, for example, but she doesn't feel it herself - her life is ruled by her intellect. She feels as if she is often daydreaming and disengages from her environment. She believes that an autistic child left to his own devices will remain in his alternative worlds and completely shut himself off from social contact. Despite all these differences, Temple Grandin notes, she feels valuable and is aware that it is autism that has allowed her to achieve much. She went on to become a doctor of animal science, a professor at Colorado State University, wrote a number of best-selling books and became a consultant to the meat industry on animal behavior. She points out that people with ASD also have a sense of identity, which they have often been accused of lacking [1].

This is what life is like for many people with autism spectrum disorder. They can function in society with support. However, most do not do so well. To improve their quality of life and help them build it more independently, teaching them important communication skills is key. However, there is no universally accepted treatment for autism spectrum disorders. This is due to the lack of a thorough understanding of them. Therefore, scientists are conducting research to discover the causes of ASD, which will enable the development of effective therapies. A variety of methods are currently being used to improve the quality of life for people with these disorders. These include applied behavioral analysis (ABA), speech therapy, occupational therapy, music therapy, auditory integration therapy (AIT), art therapy, aquaterapy, hippotherapy, dolphin therapy and many others [1].

The lack of an established treatment path frustrates those dealing with these disorders, as well as parents of children with ASD. The latter often have to search for therapeutic methods on their own, as they are deprived of support. They understand that even for people with ASD whose intelligence level is close to the average of society, the prognosis for independence, professional life and life satisfaction is unfavorable. Therefore, they experience a great deal of mental strain, because they know that their child's future depends on their determination. However, a structured and supportive environment can create the conditions for learning important communication skills and building a more independent life [1].

People with autism spectrum disorders face many difficulties in their daily lives. To this day, they and their families still face the consequences of erroneous theories about the disorder. In the 1960s, Bruno Bettelheim suggested that autism is caused by mothers' cool attitude toward their children. Through this, even subconsciously, parents are blamed or parents blame themselves for causing ASD in their children [1]. Other problems faced by people with ASD include feelings of loneliness, negative experiences of contact with the outside world, dependence on family, and a lack of therapeutic support and support based on peer involvement [3].

Children with ASD grow into adults with these disorders. Improvements in functioning from childhood to adulthood in all spheres of life occur in only 10-15% of people with these disorders. Often after leaving the school system, people with ASD stop making progress and begin to function worse. This translates into deterioration of mental and physical health. They continue to depend on their families and are often unable to find work. People with autism spectrum disorder and their loved ones are overtired, experience severe stress, social isolation and lack of support. ASD can also be accompanied by other behavioral symptoms - hyperactivity or slowing down, aggression, compulsions, self-injury, and affective mental disorders. Epilepsy, allergic respiratory and gastrointestinal diseases may also occur [3].

People with ASD are not distinguished by any common physical characteristics. This is why autism spectrum disorders are referred to as "invisible" disabilities. Although it cannot be seen, it significantly affects the quality of life, preventing full participation in society. Often because of this "invisibility," those around them do not understand and tolerate the behavior of people with ASD [3].

Increasing awareness in society is one step toward improving the quality of life for people with ASD. Understanding the behaviors that occur and being sensitive to the needs of such people can positively affect their functioning in everyday life. However, for this to happen, we should all turn the judgments that appear in us into curiosity and a desire to help. When automatic judgments about (un)raised children arise in us, let's stop for a moment and think: "How can I support children and then adults? How can I support their parents?" If we don't have the space for that, let's at least ask ourselves, "How can I not get in the way and make it difficult, because I see that they have a lot of challenges anyway?"

It is extremely important that people with ASD receive lifelong support in a coordinated and holistic manner. Consistency must be created in the health care, education and social welfare systems, and the causes of ASD must be accurately determined, medical and educational and behavioral therapies developed. This will enhance the quality of life of people with these disorders and increase their independence. Let's remember that although the world of people with ASD is unimaginably different from ours, it is just as real.

At the Paley European Institute, we do not diagnose autism spectrum disorders, although in the process of treatment we also see patients who live with ASD in addition to orthopedic or neurological/orthopedic difficulties. Working with them requires specialized knowledge and experience, which is why it should be coordinated by educators or psychologists who specialize specifically in this area. Their valuable guidance and experience derived from daily work with people with ASD (whether in the classroom or at home) can improve the quality of life not only for children, but also for their parents.

Sources of knowledge and inspiration that led to this article:

[1] Deutsch Smith D, Special pedagogy, vol. 1. transl. T. Holowka, AP Zakrzewski, Warsaw 2008.

[2] Childhood disintegrative disorder, ICD-11 (foundation) [accessed 2021-04-23].

[3] Szafranska, A. Social networks and social support networks of families of adults with autism spectrum disorders. Disability, 2018 (30 (2018)), 207-221.