Text taken from the page of the Federation of Croatian Autism Associations and translated into English https://www.autizam-suzah.hr/o-autizmu/
ABOUT AUTISM
The definition and our understanding of autism have developed and changed over time, and they continue to develop to this day. Diagnostic changes, progression towards earlier diagnosis and support and understanding that autism can manifest in girls and women too, and that autistic children grow up to be mature adults and elderly autistic people, have significantly contributed to a better understanding of heterogeneity in the autistic population.
BASIC INFORMATION ON AUTISM
What is autism?
Autism – clinically known as a disorder on the autism spectrum – is most commonly defined as a neurodevelopmental condition that is characterized by difficulties in social communication, or interaction, and by limited and repeated patterns of behaviour, interest and activity. Autism is a neurodevelopmental condition, which means that it occurs at the very beginning of the child’s development, but also that the way autism manifests itself in a particular person changes throughout the life. Autism has a comprehensive impact on the development and permeates a greater number of developmental areas, and can, in different ways and to different extent, affect each of them (the National framework for the screening and diagnostics PSA, 2015).
Autism is not a condition that can be considered “curable” or “incurable” because there are no physical symptoms and it is not treated with medication. The contemporary approach to autism dictates that we take a break from the clinical picture and view autism as a normal variation within human diversity, which should be acknowledged and appreciated (KAPP et al., 2013; Smith and Jones, 2020). Therefore, autism can also be defined as a neurological difference that changes the way a person thinks, communicates and interacts with others and experiences the world around them (Walker, 2021).
Why do we talk about the autism spectrum?
When we talk about the autism spectrum, it actually means that there are several ways in which autism can be manifested and experienced. In other words, although autistic people may function differently in certain areas, these differences will not be the same in all persons (Happé and Fritith, 2020).
In addition to there being a big difference between areas in which a person is successful and areas where support is needed, these differences can also vary significantly depending on the day and the specific situation in which the autistic person finds themselves. All autistic people develop, but the order in which they develop their individual skills, the scope to which they develop them and the way they develop them will significantly differ from one person to another (Whitehouse et al., 2018).
Taking into account the above stated facts, the use of functional labels should be avoided. The term highly functional autism is usually used to describe those people who possess a certain degree of functional communication, average or above average intelligence and who are able to function in daily life with minimal or no level of support. On the other hand, the term low functional autism is most commonly nonverbal autistic persons with intellectual disabilities and with significant support needs. In addition to the social implications of the labelling of someone as “low functional” and possible connotations that result from such labels, such functional categorization does not offer an accurate representation of the spectrum of autism (Whiteley et al., 2021).
Autism – disability or neurodivergence?
The ubiquitous influence of the medical continues to be visible and autism is still most often considered to be a disorder or handicap in the sense that there is something inherent in the individual, which has an unfavourable effect on its possibilities to participate in society to the greatest extent possible. According to the medical model of autism, it is viewed as a set of defects that in themselves disable an individual, not taking into consideration numerous social factors (e.g. discrimination, stigmatization, insufficient services) that significantly limit the person in the realization of an independent life and complete involvement in the community (Chown and Chown Beardon, 2017).
These views have been disputed in recent years by the advocates of the neurodiversity paradigm. Starting from the mentioned paradigm, the world is witnessing the start of a social movement for neurodiversity that emphasises the value of neurological differences and advocates the idea that it is not necessary bad to be autistic because many advantages arise from the differences in communication and the way of achieving social interactions. The paradigm of neurodiversity moves away from the medical views of autism as a disorder that must be cured and puts focus on autism as socially produced disability and dimension of human diversity (Van Den Bosch et al., 2018).
While autism is first and foremost a different way of experiencing and understanding the world, it can also be considered a disability, that is, a difference that represents a disability in the context of the demands of the neurotypical world (Happé and Frith, 2020). Not only in the sense that certain features of autism can make it difficult for a person in everyday life, but that the functioning of a person will also be conditioned by certain environmental factors, such as a physical and sensory environment, a sense of acceptance and involvement of the autistic person in the society, if they have access to services and support, what are the attitudes of society towards autistic people and such. A balanced view of neurodiversity acknowledges that autistic individuals can want some things to change for them, and at the same time want to be what they are. This includes accepting that some neurological differences are unfavourable, whether inherent or in interaction with the environment, and that they may benefit from appropriate targeted interventions (Leadbitter et al., 2021).
Autism and disability are not derogatory or offensive words. They must not be viewed as a taboo, a negative aspect of a person or as an obstacle to overcome. It is absolutely possible to be successful in life and achieve great things, and yet be an autistic or disabled person (Asiam, 2022).
How to talk about autism?
Although autism has been more recognized and accepted in recent years, some may not be sure how to speak properly about autism and the experiences of autistic people. The language and terminology used to describe autism are complex and are the subject of many disagreements (Boué, 2022). Disagreement is mainly caused by significant changes in the way autism has been recognized, understood and described over the years (Ripamont, 2016). Autistic people themselves and their parents, even the experts who work with them, have a very different experience of autism. As a result of these unique experiences and views, there are different perspectives in the community on various topics, including language and terminology. This is an important topic for many autistic people and their loved ones because the language used to describe autism has a strong effect on the shaping of people’s perception of autism (Kenny et al., 2015).
While the use of expressions focused on the person (a person with autism) was advocated before, more recent recommendations propose the use of expressions focused on the identity (autistic person) (Gernsbacher, 2017; Bury et al., 2020). Proponents of expressions focusing on identity often consider autism an important part of their identity that cannot be separated from them and should, therefore, be observed as specific to a person and accepted as such (Kenny et al., 2015).
Asking an autistic person how they would like to be addressed is a great way to express the respect for the person and their preferences. If an autistic person is nonverbal and/or uses a different form of communication, try to respect their communication preferences whenever you can. If you are not sure, ask family members or other people who provide support to the autistic person (Boué, 2022).
What causes autism?
It is natural to want to know what causes autism, but it is likely that there is no single cause. Research continues to deepen our understanding of potential etiological mechanisms in occurrence of autism, but no unique cause has been identified to this day. Most cases include a complex and variable combination of genetic and non-genetic factors that affect the early brain development (Van der Gaag, 2017). In other words, in the presence of genetic predisposition for autism, non-genetic influences or environmental impacts may further increase the possibility of autism (Hodges et al., 2020).
And while the etiological and epidemiological mechanisms of autism emergence have still not been fully clarified, children are known to be born autistic. Autism cannot be acquired later in life under the influence of external factors, such as a vaccine or watching television (Kronke et al., 2016).