In recent years, the term “autism” has begun to gain space in the popular imagination. This is because with the increase in awareness and the changes made to the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders), carried out in the last decade, the number of diagnoses of this condition has increased significantly.
According to data from the CDC (Centers for Disease Control and Prevention, United States) the number of children up to eight years of age diagnosed with autism spectrum disorder (ASD) was 1 out of every 166 in 2004. Today, the Report released in 2023 Estimate that this amount is already 1 out of every 36 children, according to information collected in 2020. In Brazil there are still no official data, but considering data from the CDC, experts estimate that the country has about 5.95 million people with autism.
Along with this, in 2015, the Brazilian Law on the Inclusion of People with Disabilities was established (Law No. 13,146). Since then, efforts to enforce the law have increased and so has the development of methodologies and technologies for this audience.
Even so, the understanding of what this condition is and how it is manifested in the daily lives of people with it is still in its early stages. In the words of Leila Bagaiolo, psychologist and co-founder of Grupo Gradual: “Today everything is still very embryonic. We need to discuss more, with transparency and seriousness, to understand what everyone has in terms of benefits, needs and limits, so that we could reach common ground. Services, paying sources, public agencies, schools, family members, and people with ASD need to talk more so that we can truly develop efficient, effective and sustainable practices for this audience”.
Therefore, to incite this debate, it is worth understanding what are the characteristics of people with ASD. See below.
Characteristics of autism
Understanding autism can be a bit complex. Although they have some common characteristics, each person with ASD is unique. That is, there is no pattern of behavior that allows easy identification for those who do not know much about this condition.
“Autism is a neurodivergent condition, with heterogeneous characteristics in definition and causes. It lasts throughout life and impacts various areas of development, what we call pervasive, because it covers various areas of social development, interests, and learning, since comorbidities such as intellectual disability often exist,” explains Bagaiolo.
In this sense, Claudia Romano Pacifico, psychologist and Leila's partner in Grupo Gradual, affirms that, according to the manuals for categorizing psychiatric conditions, there are two pillars for diagnosing a person with ASD.
“One of the points is having difficulties with social communication. In this case, it's more than just communication and more than just social interaction. Both were combined in this social communication term, because even if that someone speaks, they may not speak in a way that promotes adaptive interactions. Another great characteristic has to do with repetitive and restricted patterns of behavior, which can be motor or even rigid patterns of thought and behavior throughout life,” explains Claudia.
However, other medical conditions can also affect people with autism, such as anxiety, sleep disorders, seizures, and gastric problems. It is also common for some to be more sensitive to sensory stimuli, including sounds, flavors, touch, and lights.
Even so, there's still a lot to discover about atypical brains.
New research attempts to understand ASD
To help illustrate the issue, Claudia tells us about new lines of neuroimaging research, which investigate the brain responses of typical and atypical people.
It is an analysis of how people direct their eyes and which areas of the brain are activated when they watch, for example, movie scenes. “The typical person in a scene, for example, in a movie that has a dialogue. She looks at that square scene and her brain will trigger places associated with emotion. Not atypical people, on the other hand, they don't look at the scene in such a way as to scan the 'clap' of language — that when one says I look at it and when another one says it I look at it — the atypical fixates on a piece that has movement and doesn't look at the whole thing,” explains Claudia.
In this study, researchers found that, while typical people detect gaze, lip movement, and gesticulation, people with autism tend to look only at their mouths, which causes them to miss other information. This pattern of looking triggers a different part of the brain and causes the wearer to not interpret social situations so well.
According to this review study, the issue of looking is supported by most studies and suggests that avoiding eye contact is a way to reduce amygdala overexcitation.
There are also lines of research using “mini brains” to evaluate the neurons and branches of atypical brains. The Brazilian scientist Alysson Muotri, for example, is growing neurons in small artificial brains, which makes it possible to investigate what branches are being created and what signals are being transmitted.
“What we have seen in the autistic brain is a different branch of connecting neurons transmitting much more impoverished signals in the autistic brain. Then there are smaller, less powerful, and less branched connections. This is one way of working, but a lot is still being discovered”, adds Claudia Romano.
Challenges
Studies and debates have advanced, but there is still a long way to go. The experts interviewed for this article agree that among the major challenges of TEA are elements such as: pervasiveness of the condition; misinformation About the condition and the access therapies and education.
Autism Spectrum Disorder (ASD) is a pervasive condition. In other words, it requires the integrated work of several specialists from different areas to stipulate interventions.
In this sense, “there is a lack of a major dialogue, which we call intersectoriality of health and education. Autism necessarily impacts social life and also learning, one's own coexistence, and places of great coexistence. So health and education need to be more aligned and have resources on both sides. It's not health that has to pay for everything and education doesn't have to do everything, as they sometimes confuse. The fight for resources must be on both sides, but it must also be joint,” explains psychologist Claudia Romano.
In Raquel Del Monde's view, this is because “the biggest barrier is the misinformation, lack of knowledge about autism by society in general”. For the doctor, who specializes in conditions affecting neurodevelopment, social networks helped to expand knowledge about, but in everyday life the reality is still far from ideal. “When people need support at school or seek therapy, they still face a lot of ignorance on the part of people,” explains Del Monde.
Consequently, assistance in these areas is underfunded. “If the person seeks educational and therapeutic support in the public system, they will have difficulties. In the public system in particular, we see that educational support is ahead of therapeutic support, because in one way or another, with the laws of educational inclusion, schools sought training. However, it is often insufficient and inadequate training,” explains the doctor.
Even so, the public sector still showed some progress in educational assistance. On the other hand, “the services that offer therapy in the public system are very rudimentary, very primitive, they leave much, much to be desired”, reinforces the specialist.
One of the reasons for this is because there is still “a gap in the curricula of the graduations of the health professionals involved in diagnosis and treatment,” says Raquel.
She continues, explaining that “both in medicine and in psychology, speech therapy, and occupational therapy, the grids have not been updated to give the attention that autism deserves. Due to the pressure of demand for diagnosis and treatment, people have sought specializations in the area, but it is generally a demand coming from professionals already trained and inserted in the market”.
Methods and new technologies
To minimize the effects of autism on daily life, it is possible to resort to methods and technologies.
In the Gradual Group clinics, the focus is on the ABA (Applied Behavior Analysis) method, which in Portuguese means Applied Behavior Analysis. This methodology is evidence-based and focuses on understanding and modifying behavior. In the context of autism, ABA helps to acquire social, language, academic, and self-care skills, in addition to reducing problematic behaviors. In addition, the method also includes the use of structured and individualized teaching techniques, such as positive reinforcement and modeling, to promote development and independence.
For more severe cases, in which the individual does not really speak, there is augmentative and alternative communication. As doctor Raquel Del Monde explains: “Augmentative and alternative communication systems can be very simple, starting with the PECS (Picture Exchange Communication System), which can be made of simple material, with pictograms, images that symbolize actions and objects, to allow unoralized children to expand their ability to communicate, express themselves and understand other people”. These systems can also be associated with technologies, such as applications for mobile devices, which can be used in various environments, such as: at home, school, playing with friends, and others.
Still with regard to technology, Leila Bagaiolo adds that”in low and middle income countries it is necessary to have more creative options, so that we can have various types of intervention taking place. Technology may be a vector that allows this type of expansion of access, but it requires a great debate from the society involved in this,” says the psychologist.
Thinking of promoting this debate, the founders of Grupo Gradual claim to be working together with stakeholders, families, ASD specialists, and professionals from other fields to develop and evaluate the viability of an application called “TEA Diary”.
Finally, Cláudia and Leila stress that, in order to broaden the debate, it is of great importance that people diagnosed with ASD and their families “take the lead and come to the front line with us”.
Want to learn more about autism?
Health Rocks recommends the following readings:
- Romano, C., & Bagaiolo, L. (2022). Enchantment, practice, and commitment to the production and dissemination of applied behavioral science. Perspectives in Behavior Analysis, 13 (2), 288—305. https://doi.org/10.18761/CoPACaDfa5
- Hume K, Steinbrenner JR, Odom SL, Morin KL, Nowell SW, Tomaszewski B, Szendrey S, McIntyre NS, Yucesoy-Özkan S, Savage MN. Evidence-Based Practices for Children, Youth, and Young Adults with Autism: Third Generation Review. J Autism Dev Disord. 2021 Nov; 51 (11) :4013-4032. doi:10.1007/s10803-020-04844-2. Epub 2021 Jan 15. Erratum in: J Autism Dev Disord. 2023 Jan; 53 (1) :514. PMID: 33449225; PMCID: PMC8510990. https://pubmed.ncbi.nlm.nih.gov/33449225/
