I IDENTIFY AS AUTISTIC AND AM PART OF THE COMMUNITY OF INDIVIDUALS WITHIN THE SPECTRUM: A SOCIO-ANTHROPOLOGICAL ANALYSIS OF AN ACTIVIST IN THE NEURODIVERSITY MOVEMENT IN BOGOTÁ

IDENTIFICO-ME COMO AUTISTA E FAÇO PARTE DA COMUNIDADE DE SUJEITOS DENTRO DO ESPECTRO: UMA ANÁLISE SÓCIO-ANTROPOLÓGICA DE UM ACTIVISTA DO MOVIMENTO DA NEURODIVERSIDADE EM BOGOTÁ

Abstract

This study reports the reflections of Andrea Quintero, the mother of a young man with autism who identifies as autistic. This person intends to promote the neurodiversity movement, which struggles for the recognition of autism as a human divergence. A socio-anthropological analysis based on post-structuralism, sociology, and ethnographic studies on autism spectrum will show the intermediate zones of neurodivergent activism, in which negotiation and dispute points occur between some autistic subjects, specialists, and parent organizations. In turn, this research describes Andrea Quintero’s criticisms of the division between adaptable and unadaptable in our time.

Keywords:
Autism; Social Anthropology; Neurodiversity; Parents; Political activism

Resumo

Este artigo traz um relato das reflexões de Andrea Quintero, mãe de um jovem com autismo e se identifica como autista e que pretende promover o movimento da neurodiversidade, lutando pelo reconhecimento do autismo como uma divergência humana. Através de uma análise sócio-antropológica, baseada no pós-estruturalismo e em estudos etnográficos sobre o autismo, mostra-se, aqui, as zonas intermediárias do ativismo neurodivergente, onde ocorrem os pontos de negociação e disputa entre alguns sujeitos autistas, especialistas e organizações de pais. Além disso, esta pesquisa apresenta as críticas de Andrea Quintero à divisão entre adaptáveis e inadaptáveis em nosso tempo.

Palavras-chave:
Autismo; Antropologia social; Neurodiversidade; Pais e mães; Ativismo político

INTRODUCTION

Psychiatry understands the autistic spectrum (AS) as a condition which produces changes in social interaction and restrictive and repetitive interests (Asociación Americana de Psiquiatría, 2014). This definition is a result of biomedical knowledge, which understands autism as a consequence of differences in nervous system. The social sciences also examine the experiences of those who have this diagnosis, which are crossed by variables such as gender and economic status (Angell & Solomon, 2017). In ethnographic work, some thinkers have described the experiences of autistic people and their relationship with labor-educational inclusion (Aydos, 2016; Rivera, 2004). Such research produces new ways to understand autism.

As a consequence of ethnographic research on autism, some anthropological approximations have investigated organizations founded by fathers and mothers in Latin America, such as Associação de Amigos do Autismo (AMA - Friends of Autistic People), and the pathway in which they internalize biopsychiatry¹. These centers also stress social modifications all citizens must carry out to empower people within the spectrum (Cabral et al., 2018; Ortega, 2018; Rios & Andrada, 2015). Thus, anthropological thinkers have showed how different epistemic positions coexist in Latin American movements, including biomedicine and the social model of disability, which aims to show the social barriers against people with differences (Oliver, 2013). The relation between biomedicine and society enables parents to internalize the postulates of expert knowledge (biopsychiatry) and fight for the social inclusion of their children (Ortega, 2018; Rios, 2017).

Despite the great contributions of these anthropological analyses, the type of activism they study focuses on fathers and mothers, leaving aside the movements of autistic people. Hence, other approaches consider the social reflections of people within the spectrum by studying the neurodiversity movement, which understands AS as a neurobiological divergence, rather than a pathology (Fein, 2020; Langan, 2011). Some Latin American studies under this perspective analyze the spectrum as a difference of human beings, criticizing ableism, a concept that describes the social prioritization of some bodies over others (Araujo, 2022; Fietz, 2020). From an ableist perspective, those who adapt to the market and the school are people with greater importance than those who are rejected by these organizations. The neurodivergent movement is critical of this division between adaptable and unadaptable and raises the need to accept neurobiological differences in schools and workplaces (Araujo, 2022).

Anthropological analyses of the struggles of people with autism have also complemented sociological studies, which study the power relations (Eyal et al., 2010; Skubby, 2012). In these works, the concepts of psi knowledge (psychology, psychiatry, and psychoanalysis) define the spectrum and the treatment of its “symptomatology” (Montero-Martínez, 2022; Vakirtzi, 2010). Post-structuralist knowledge, inspired by the theoretical-methodological tools of Michel Foucault (archaeology and genealogy), has helped to understand how autistic people emerge in various places in the world, by the historical struggles between professionals, families, and people with this condition (Montero-Martínez, 2022). Thus, the autism spectrum, beyond its biogenetic composition, can be thought by its socio-cultural factors, such as the legitimacy biopsychiatric power has acquired since 1980 and the empowerment of some parents around the world (Eyal et al, 2010).

Based on the tools of anthropology and post-structuralism, this study will show the struggles of a Colombian mother (Andrea Quintero) of an autistic youth. It will also describe the points of agreement and disagreement between her and Latin American parent organizations such as CAL (Colombian Autism League). Thus, it will understand autism as a condition that intertwine socio-historical practices and personal experiences and show how Andrea develops a socio political ties with some movements, such as the neurodivergent group, and fights for a more inclusive society in interpersonal and educational areas. Some anthropologists have understood this search for subjectivity and a sense of belonging as autistic culture (Gokh et al., 2018; Fein, 2020), complementing the term biocitizenship, which emphasizes the pathway in which our identities are constituted by biological definitions (Rose, 2007).

This study will report interviews with Andrea from 2017 to 2020. She is a 45-year-old woman who lives in an upper-class neighborhood in northern Bogotá, Colombia. Andrea Quintero studied systems engineering at the University of the Andes in the 1990s and currently lives with her two children and their father. Her daily life involves care for her children, her activism in social networks, and her professional practice. Andrea is a mother and autistic, so she is constantly reflecting on parenting and what it means to be within AS. Her autism diagnosis was not the product of a medical consultation in the first years of her life because Andrea was already an adult and a mother when she began to describe herself as an autistic².

THE BEGINNINGS OF ACTIVISM

During 2013, Andrea experienced a whole process of political introspection as she reflected on the different events that were occurring in Colombia, such as the National Agrarian Strike. This event questioned the free trade agreements Colombia had signed with the United States, which affected agricultural production. She agreed with the peasant protest but she felt buying foreign products was incoherent: “I think I am very hypocritical because, although I make an effort to buy nationally, I continue to make my purchases in a large supermarket. Sometimes I drink Coca Cola and in the last month I bought clothes “made in China”³. Andrea expressed her desire to support the peasant movement but perceived some contradictions in her actions, which made her politically uneasy “How do I find an articulation between my thoughts and my actions?” was Andrea’s question during the National Agrarian Strike.

The peasant movement of that time was not the only thing disturbing Andrea’s life. Her relationship with her eldest son, whom I will call Sebastian⁴, raised many questions. She wanted to be an excellent mother and provide all the love possible to her little one, so she joined groups of caregivers with the same expectations. Andrea belonged to online forums aimed at supporting the paradigm of attachment parenting. This position, developed by pediatrician William Sears in the United States, suggests that women can fully dedicate themselves to their children (Bustamante, 2019). Parents must be very attentive to their little ones, they must even sleep with them for several years of their lives, so the presence of a third party, such as a nanny, is inappropriate. These statements generated controversy in Argentina, the country in which Andrea lived for a few years, as some psychologists questioned parents on attachment parenting. Several healthcare providers considered this perspective as an overprotective practice since it generates dependency between mothers and children (Bustamante, 2019). Despite these criticisms, some mothers think that this paradigm as the best parenting option.

Now, Andrea found supporting the attachment parenting paradigm in its entirety challenging. Sometimes she strongly corrected her son during the first years of her life and even yelled at him. Such actions were criticized by some parents in internet forums, in which the mother shared her experiences. For this reason, Andrea began to ask herself the following: why do I educate in one way if I want to educate in another?

Her position on some political issues, such as the agrarian strike, and her point of view as a parent offered objects of permanent contradictions, which would diminish when Andrea criticized behavioral psychology. When behavioral psychologists recommended punishment as the basis of education, Andrea set out to question the postulates of behavioral epistemology. For some psychologists, Sebastian’s crying and attention-seeking behavior in his early years of life had to be managed by reinforcement and punishment. Reinforcements served to reward a desired behavior, such as paying attention in class, whereas punishments are used to reduce inappropriate behavior, such as failing to follow instructions or crying insistently (Lovaas, 1987). Likewise, for some supporters of behaviorism, parents should place limits for their children and thus show them how far their behaviors can go else children can become capricious (Troice & Verduzco Álvarez, 2001).

Andrea rejected these proposals because experts only sought Sebastián’s adaptation to family and school regulations, leaving aside his personal well-being. In turn, the mother considered that the limits behaviorists promoted masked the imposition of the desires of some over the needs of others. Therefore, she promoted the opposite, the imposition of limits that favored the weakest, such as children. From her point of view, one must limit those who seek to take advantage of us by either manipulation or abuse of authority (Vidal, 2013b). Hence, we must learn the most important limit: saying no. Andrea had difficulty saying no on many occasions because she never expressed her disagreements at school and work, which prevented her from setting boundaries with her superiors (Vidal, 2013b). For this reason, the activist wanted her children to limit others by saying no when they felt attacked by family or school authorities. This would differentiate her little ones from behaviorists, who only impose limits to control the weakest.

As the events described so far have shown, Andrea’s concerns about the national situation, as well as her relationship with Sebastian, cemented what was going to be her criticism of behavioral psychology. Before questioning behaviorism, the mother was already problematizing free trade agreements and wondering about parenting methods. Her criticism of various social, economic, and relational practices preceded her questioning of psi knowledge and her autistic identity. Therefore, I will show how Andrea questioned and dialogued with psychology and psychiatry when her son was diagnosed with autism, which enabled her to consider herself a woman within AS.

AS

Since 2005, when Sebastián turned two years old, psychology and psychiatry had tried to associate him with AS. In Argentina the boy was diagnosed with autistic defenses - although insufficient for a pervasive developmental disorder diagnosis according to the DSM-IV. In Colombia, experts classified him as within the Asperger spectrum in 2008. At first, the mother rejected these labels as she disagreed with psychiatric categories (Vidal, 2013a). However, in 2014, she accepted her child’s diagnosis as a result of her interaction with other mothers and some people with verbal autism in English-speaking internet forums, which analyzed autism as a divergence, rather than as a pathology. Andrea began deeming AS as a way of life (Vidal, 2015a). For this reason, Andrea recognized her son as autistic.

Some of the professionals in Colombia and Argentina recommended applied behavior analysis (ABA) therapy, a behavioral treatment specialized in autism. However, Andrea had to distance herself from the opinion of experts and some parents to defend her point of view, which consists of the ideal of refusing to submit to those who impose themselves on others. For Andrea, unlike those who support behaviorism, ABA fails to meet the criteria of an evidence-based treatment since this type of intervention must have three components: the client’s or patient’s perspective of values, clinical experience, and the best current evidence (Vidal, 2019a). Although ABA can comply with the latter two, the first point is incompatible with the behavioral methodology as it cancels people with autism, especially those who are non-verbal.

From Andrea’s point of view, stereotypical behaviors such as hand flapping, which are diminished by behaviorists, reduce one’s anxiety. When behaviorism ignores these facts, it neither recognize clients’ value perspectives nor meet all the criteria for an evidence-based treatment: “if ABA does not improve people’s lives, it cannot be said to be the indicated treatment” (Interview, December 2017).

In turn, her criticism of the behaviorist model was articulated with her new identity: an autistic mother. She began to describe herself as a person with Asperger’s, a term she later questioned and related some events in her life with this condition, such as not sharing with her classmates during recess at school years. By recognizing herself as a person within AS, and thanks to the knowledge of a second language (English), she was able to be part of the community of neurodivergent people on the internet: “there are many people who think like me. We are all conglomerating globally through social networks to raise awareness about autism and the neurodiversity movement” (Interview, September 2017). Since then, Andrea began using the term neurodiversity to describe her struggles.

Her affinity with the diagnosis of autism evinces Andrea’s ambivalent position on psi knowledge. Although she is critical of ABA, Andrea also accepts the use of a biomedical category (such as the autism spectrum) to define herself and her son. This type of relationship, in which the person neither rejects nor fully accepts psi knowledge, shows the constant negotiations and disputes medical anthropology evaluates as these processes cross the experience of psychiatric discomfort by a mixture of the expectations of those who are diagnosed and expert postulates (Grinker, 2020; Jenkins, 2012; Kitanaka, 2020; Ospina, 2008). Andrea’s case can be analyzed from this perspective since her expectations and the opinions of psi knowledge are in constant dialogue and discussion. Andrea is a great critic of behaviorism but she agrees with understanding autism from a biogenetic perspective⁵. Below, I will show how the negotiation and disputes with expert knowledge differ between the neurodiversity movement and parent organizations, such as CAL. Consensus and disputes often differ from each other.

DIFFERENCES

The differences between Andrea and the Colombian Autism League are shown by how they refer to people within AS. For those related to CAL, the correct thing is to say people with autism due to the precedence of the person over their condition. However, Andrea believes the correct thing is to say an autistic person since the neurobiological divergence cannot be separated from one’s identity. Autism, rather than an addition, configures an element that constitutes the entire being.

Another point of disagreement refers to celebrating dates since, for CAL and AMA, April 2 is an important day to highlight the needs of people with autism as the United Nations has declared it as the world autism awareness day (Pinedo, 2009). However, Andrea claims that parents and experts speak for autistic person on this date without considering the latter’s opinions. On the other hand, supporters of the neurodivergent movement celebrate Autistic Pride Day every June 18, when some people within AS make their condition visible as another divergence, exactly as with sexual orientation: “we prefer to celebrate June 18, just like the LGBTIQ+ community celebrates June 28” (Interview, February 2018). Andrea thus shows her identity without shame as some members of the gay community.

Likewise, the colors and symbols CAL use to celebrate April 2 stem from an English-speaking institution that opposes the neurodiversity movement: Autism Speaks. General Electric vice president Robert Charles Wright and his wife Sussane-grandparents of a person with autism (Autism Speaks, 2019)-founded this corporation in 2005. Autism Speaks aims to raise funds to research the genetic components of autism and thus find a possible cure (Rosenblatt, 2018). It also supports behavioral treatments. Autism Speaks and CAL use the color blue and a puzzle piece, symbolizing the complexity of people with autism (Montero-Martínez, 2022).

At the same time, for those related to the neurodiversity movement, the State is secondary in the struggles of autistic people. From Andrea’s point of view, “there is no point in having laws if the dynamics in the daily lives of autistic people do not change” (Interview, February 2018). For her, the most important disputes take place in schools, workplaces, and families because these spaces legitimize behavioral treatments and produce discomfort in autistic people. Therefore, social changes must take place in the lives of those on the spectrum, rather than in State entities.

CAL and AMA, on the other hand, take on the state role to promote some type of awareness for autism⁶. By coordinating with the legislative and executive branches of the States, these centers become essential to carry out government policies to include autistic people in society. As the newspaper El Tiempo (Pinedo, 2009) has shown, the Colombian State and the media consider the Colombian Autism League to promote the legal recognition of people with disabilities, such as those with autism, and increase their labor and academic inclusion. Thus, CAL makes autism visible by exercising government power.

Despite having no intention of gaining State influence, Andrea and her group mobilize on social media and online blogs to evince their criticism of the behavioral model: “through social networks I question all those who want to impose behaviorism” (Interview, January 2018). As some cyberspace studies have shown, social networks strengthen the identity of people belonging to disability movements (Cocq & Ljuslinder, 2020), which has enabled Andrea to be an online activist. Thus, the objective of gaining State influence, characteristic of organizations such as CAL, is replaced by a desire for change via social media. Twitter and Facebook constitute the spaces in which the neurodiversity movement makes its criticism of behaviorism and Autism Speaks visible.

In turn, the intermediate zones, in which disputes and consensuses with psychiatric knowledge take place, show another difference between Andrea and CAL. For the mother, dissent with experts becomes visible with ABA therapy but CAL can become more critical of the diagnoses of AS and the medication by the psychiatric authorities. The phrase “a diagnosis is not a prognosis”, which the parents of the Colombian Autism League use, shows the divergences when psychiatry speculates about the future of people with autism. It is unacceptable for a physician to try to guess what people with autism can do in the relational and educational-work fields.

Likewise, some CAL members (parents and people within AS) criticize psychiatric medication since they consider them excessive and limit one’s autonomy: “the medications make me sleepy, which is why I prefer to handle the problems without their aid. Psychiatrists go overboard when they prescribe some sleeping drugs”, said an 18-year-old person with autism whose mother was an active member of CAL (interview October 2019).

Andrea, however, understand psychiatric practices as a good option when one chooses them: “neurodiversity is not the same as anti-psychiatry, medications are sometimes necessary, as long as they are an individual choice” (Interview, January 2019). For Andrea, ABA is a social imposition, but medication helps those who freely visit psychiatrists.

Although Andrea questions behavioral models, she supports other psi interventions. She has attended Géstalt groups, in which she has reflected on the actions that have prevented her from accepting herself, such as living in fear of the authority of others at school and at work (Vidal, 2017). What she learned in these groups has reconfigured her way of seeing the world. Her goals are no longer based on excelling in the work sphere-as she did when she practiced her profession as a systems engineer for the first time-but on accepting herself with her defects and qualities.

Thanks to this process of self-acceptance, she has found peace of mind in her daily life in baking and dancing. Baking enables her to try various types of recipes, which she likes, whereas dancing offers her a means of expression other than verbal language (Vidal, 2015b). In the Río Abierto dance group in Bogotá, Andrea dances several rhythms to express her anguish, sadness, and joy without having to say a word. Her body expression helps her show the feelings she is unable to verbalize.

The activist has shared her acceptance process by dancing with other people on the spectrum, which is why she carries out virtual counseling in which she explains the importance of understanding autism and the neurodiversity paradigm. She aims to contribute to the peace of mind of people within the AS: “the process of self-acceptance is important to generate peace of mind with oneself. Companionship from someone autistic can be of great help” (Interview, January 2019). For her, an autistic person can feel a lot of empathy for another, which is why some people with autism like her advice.

In short, the differences between Andrea and CAL stem from how they refer to autism (a person with autism or an autistic person) and the means they carried out their political dispute. While, for CAL, the State is the center of the struggles, for Andrea, other spaces, such as social media, gain importance in her neurodivergent project. Likewise, the intermediate zones differ for these two movements since CAL sometimes vehemently questions the exercise of psychiatric power, whereas Andrea focuses on ABA. Now, as the next section will show, the differences with parent organizations are not the only thing that constitutes Andrea’s activism. Everyday reflections on school will also help to understand the criticism made by the neurodiversity movement of everyday life.

THE STRUGGLES OF EVERYDAY LIFE

Although all the schools in which Sebastián has studied are called inclusive and private, his mother finds a great difference between what is said and done in these educational centers. She remembers the way with which some teachers excluded her son from field trips as they understood his emotional crises as impediments to sharing with other students: “he could have had support to take academic subjects but, by excluding him from some activities such as field trips, inclusion is called into question” (Interview, April 2018). For Andrea, academic advice from schools is insufficient, people with disabilities must also participate in coexistence spaces, such as school outings. The removal of individuals from school life precludes talk of real inclusion.

Likewise, the teachers used phrases that affected their son: “you will not be able to study what you like”, “you will fail this class”, “you will be left on the street if you do not study” (Vidal, 2016a). These statements emotionally destabilized the young man as he came to feel incapable. For this reason, Andrea gave her son more affection than usual when his mood became dull, which educational psychologists deem an inappropriate reaction. These professionals sometimes treated the mother as overprotective and at the same time held her responsible for her little boy’s emotional difficulties. All these disastrous experiences motivated Andrea to rule out any type of school, so she tried to educate her son at home. For her, schools are centers that nullify difference no matter how inclusive they call themselves.

When Sebastián misses school for feeling excluded from all its spaces, fears took over him due to the idea of becoming an “undesirable”, who teachers use as evidence of school failure, such as the homeless. Sometimes these people are mentioned to account for the effects of poor grades and school non-attendance: “the homeless is used by the school staff to generate fear in those who are considered problematic and do not attend classes” (Interview, November 2018). A society in which economic success is a product of individual qualities also understand living in precariousness as a personal responsibility. Hence, street dwellers are exemplified as individual failure by those who wish to generate fear in people who miss school.

Now, unlike Andrea’s point of view about schools, other parent organizations in Colombia consider schooling people with autism as fundamental in the lives of people within AS. For these centers, equal opportunities in the educational and labor fields are achieved by school inclusion, as Alicia Rodríguez, a mother belonging to CAL, stated: “for us it is important that people with AS attend a regular school (public or private) since, this way, they will acquire tools that will contribute to their work performance” (Interview, September 2018). Alicia’s argument finds that caregivers may deem that the skills acquired at school are essential to achieve the inclusion of a person with autism since, according to these parents, academic and work adaptation constitute the most important thing in our society. However, for Andrea, mere schooling is insufficient if it continues to be divided and hierarchize between ideal and non-ideal students. Her son was often understood as a problem child who had to be controlled, which is very far from the acceptance of human divergences in the school field.

From my point of view, our social ideals build the association between school failure and lack of social recognition. The school institution is a means by which a person disciplines themselves to fulfill social productivity since these centers optimize our physical and intellectual capacities. We also internalize respect for authorities, such as teachers and psychologists. For this reason, Foucault (2009) and other thinkers, such as Sáenz Obregón (2014), understand schools as disciplinary mechanisms in which a person adapts to the regulations of society. Thus, schools are not only a space to learn mathematics or Spanish, they also offer a medium that forms our subjectivity and in which we learn to respect the rules. Absence from these spaces opposes an ideal referring to the formation of people who respect coexistence and base their lives on skills that are useful to the market. Hence, unschooling has been a difficult process for Andrea and her son⁷.

ABLEISM

Because of all her reflections on school that question control and hierarchization, Andrea has analyzed a contemporary ideal, “ableism.” It refers to the social exaltation of skilled people and the contempt of those with disabilities. Only those who are considered capable of working, earning money, and achieving outstanding grades in academic fields have value in society, others are underestimated and devalued (Chapman, 2023; Vidal, 2016b). For the activist, ableism permeates all social relationships, which is evident in the way we communicate with each other: “when we say imbecile or mentally retarded in a pejorative way, we imply that disability is something merely negative” (Interview, January 2019). Disability as an offense is present in our everyday language, reflecting our ableist ideal.

Andrea has changed the way she talks about herself to fight against ableism, so she has questioned categories she has previously used. For example, American ableist autistics often exalt the term Asperger’s syndrome. Some people with Asperger’s differ from autistic people since those with Asperger’s are misunderstood geniuses capable of adapting to the job market (Vidal, 2019b). Autistic people, for their part, are incapable individuals who require support to carry out their daily activities. Hence, Andrea refers to the term Asperger’s as a variant of ableism within the neurodiversity movement: “if there are cognitive or emotional limitations, diversity begins to be a source of shame for some people with Asperger. This is a totally ableist position” (Interview, January 2019). The Asperger concept separates the capable from the incapable since only those who can speak for themselves have the right to be respected for their difference, the rest must be treated with condescension. For this reason, it is best to include all autistic people within the same term, such as the autism spectrum.

For the mother, autism must be a universal label, regardless of whether a person has a high IQ (intelligence quotient) or verbal language. If everyone on the spectrum is considered autistic, no label would divide the able and the unable. For this reason, since 2017 Andrea stopped using the term Asperger syndrome and began to consider herself an autistic woman (Vidal, 2020a). According to her self-perception, she has autism due to her emotional hypersensitivity since it is easy for her to feel empathy for the suffering of others and difficulty in understanding double meaning and implicit norms in social interaction. Sometimes Andrea is unable to control her impulses under situations that overwhelm her, such as work pressure. All these characteristics have enabled the mother to describe herself as autistic: “autism is the term I use to talk about myself. I am not ashamed of it, and I feel proud of it” (Interview, September 2019).

Andrea is also proud of her disabled condition, which accounts for her physical and emotional limitations. She is a person with impairments, such as her lack of impulse control and sensory hypersensitivity, toward which she feels no shame. As the term autism, she finds impossible to separate her subjectivity from her shortcomings since these constitute her way of being and feeling. Hence, she calls herself a disabled woman (Vidal, 2020b). For this reason, euphemisms to refer to disability, such as differences, displease her: “I am a disabled person, not a person with differences, because we are all different” (Interview, November 2018).

Disabled people require support to be able to adapt to their social context, help getting around, and understanding of their way of reacting, as it happens with autistic people when they experience an event that overwhelms them. However, the ableist context in which we live individualizes the discomfort and provides no support that certain individuals require. For this reason, Andrea and her neurodivergent colleagues openly support the social model of disability, which questions the social barriers that are imposed on some individuals: “both the neurodiversity movement and the social models question the devaluation that disabled people have in society. Hence, they are similar paradigms” (Interview, September 2017). It should be noted that organizations such as the Colombian Autism League are also close to the social model as they deem important to account for the social barriers people with autism face.

Ultimately, Andrea questions ableism and problematizes the way in which our society hierarchize people’s lives by educational and work skills; hence her support for the social model of disability. Andrea’s position also complements critical anthropological approaches to ableism, which questions the way in which people with physical, cognitive, and emotional differences are despised by educational and work institutions and even by their own families, which causes the death of some people with disabilities (Araujo, 2022; Fietz, 2020). The contempt of some teachers, bosses, and parents toward those who fail to adapt to the educational-work context causes the invisibility and possible death of these “misfits.” Therefore, Andrea’s questions and some anthropological studies on ableism are an invitation to rethinking the ideals of capacity and productivity of our present.

FINAL CONSIDERATIONS

Some members of the neurodiversity movement come to consider themselves autistic as adults, as in Andrea’s case. These types of processes, in which autism is a product of a person’s experiences, rather than only a diagnosis by an expert, show that AS exceeds a biogenetic alteration. Hence, some anthropological thinkers speak of an autistic culture, a term that can be complemented by the sociological concept of biocitizenship, which accounts for an identity process that is beyond an opinion of knowledge. As seen in this study, her political and parenting reflections enables Andrea to feel part of the neurodiverse movement and recognize herself as autistic. In this way, autism was the product of the political and subjective reflections of the activist.

This study showed, by its post-structuralism and ethnographic analyses on autism, how the encounters and disagreements between Andrea and psi knowledge generate intermediate zones containing a consensus with biomedical diagnoses and disputes with ABA therapies. These dialogues between the participant and experts helped to show the differences between the neurodivergent movement and parent organizations. At the same time, Andrea’s problematization of ableism criticizes our society and its divisive practices between the adaptable and the inadaptable.

All these findings can be complemented in subsequent studies that analyze the subjectivity of autistic people. Some of these subjects probably reject the postulates of the neurodiversity paradigm, which must be understood by socio-anthropological approaches. The autism spectrum not only contains symptomatic diversity, but also evinces a socio-political multiplicity we can continue to investigate.

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• 1
  It should be noted that Brazil also have associations consisting of parents and autistic subjects related to the neurodiversity movement, such as Associação Brasileira para Ação por Direitos das Pessoas Autistas (Abraça - Brazilian Association for Action Toward the Rights of Autistic People).
• 2
  This study will also include interviews I had with people from CAL, which were carried out during my PhD thesis.
• 3
  The quotes that refer to Vidal are related to Andrea’s blog.
• 4
  Sebastián did not participate in this research as he was a minor (14-17 years old) during data collection. I lacked the necessary permission to inquire about his daily life.
• 5
  From post-structural sociology, Rose (2007) also describes this process of agreements and disagreements through the term biocitizenship, where there is a conglomerate of power relations where experts are accepted and rejected.
• 6
  Based on some anthropological analyses of the State (Das & Poole, 2004), this entity can be understood as something diffuse that acts by organizations that seem alien to it. Parent institutions, such as CAL and AMA, for example, are apparently distant centers of the exercise of state power but their activities are articulated with the regulatory apparatus of the State. Hence, they can sometimes be understood as part of it.
• 7
  Modern sociologists, such as Bauman (1999), and thinkers of critical disability theories, such as Stafford et al. (2019), have analyzed the relation between individuality, success, and failure. For these authors, the individualization of achievements and frustrations stem from a context that reduces everything to personal qualities and abilities.

Publication Dates

• Publication in this collection
  29 July 2024
• Date of issue
  2024

History

• Received
  24 July 2022
• Reviewed
  18 June 2023
• Accepted
  14 Aug 2023