HOW TO IMPROVE WELL-BEING OF AUTISTIC PEOPLE WITH THE HELP
OF NEURODIVERSITY PERSPECTIVE
Nergis Efsun Yıldız
University of Bergamo
Clinical Psychology for Individuals, Families and Organizations
Prof. Igor Sotgiu
CONTENT
INTRODUCTION
Chapter 1 AUTISM AND NEURODIVERSITY MOVEMENT
Chapter 2 EMOTIONS IN AUTISM
Chapter 3 OTHER PEOPLE AFFECTING THE WELL-BEING OF AUTISTIC INDIVIDUALS
3.1 Family
3.2 Clinicians and Researchers
3.3 Staff Members
3.4 School and Teachers
3.5 Peers
Chapter 4 SOURCES FOR WELL-BEING
4.1 Solidarity
4.2 Acceptance
Chapter 5 HUMOR IN AUTISM
Chapter 6 WHAT WE NEED FOR WELL-BEING
Family
School
Environment
Chapter 7 SUSTAINABILITY AND INCLUSIVENESS
7.1 Sustainability
7.2 Inclusiveness
Chapter 8 INTERVIEW WITH PARENTS OF AUTISTIC CHILDREN AND AUTISTIC ADULT
Barış
Murat
Gamze
CONCLUSION
LAST NOTE
REFERENCES
INTRODUCTION
It can be said as a start that there are some groups that have been left at a disadvantage in the world’s societies. These groups have been subjected to constant discrimination, violence and marginalization by other groups and their rights have been severely violated. Animals, children, women, LGBTIQ+s, some races are at the forefront of these groups, but also disabled individuals and individuals with neurodiversity. The common features of these groups are that they differ from the majority or groups that have seized power due to their characteristics from birth, and that they have been exposed to severe rights violations by these groups for this reason.
These groups have been left in the minority due to their various characteristics and have difficulty in protecting themselves. It is not desired to integrate these individuals in world societies and these individuals are wanted to be excluded from society due to some of their innate characteristics. Although the rates of this discrimination and violation of rights differ in the countries of the world, these individuals are exposed to discrimination and violations of rights, albeit at different rates all over the world. This study will be related to autistic individuals, one of the groups exposed to discrimination and violence. “How can their goodness increase, can be improved?” The possible answers to the question will be searched and emphasized.
The aim of this thesis is to establish solidarity with autistic individuals, a group that is exposed to discrimination, violence and violation of rights in neurotypical society, and to react to these violence, rights and border violations and to raise awareness about autism.
While doing this, neurodiversity advocacy will also be done.
In fact, the issue is that in addition to the difficulties experienced by autistic individuals and the discrimination and rights violations they are exposed to by society, the system and governments, the main reason for these difficulties is not they, but the discriminatory and unempathic society and system. The aim of my thesis is to raise awareness on this issue and to be a voice for autistic individuals and their families. Therefore, in addition to the literature review, I will also include interviews with family members of autistic individuals. Because I want their presence and experience to be more visible. I want them to be considered more.
According to Pellicano & den Houting (2022), autism is currently listed as a neurodevelopmental disorder ‘Autism Spectrum Disorder’ in both the Diagnostic and
Statistical Manual of Mental Disorders (DSM-5) and the International Classification
of Diseases (ICD-11). In both guidelines, Autism Spectrum Disorder is defined as a set of “persistent deficits” manifested by autistic children, adolescents, and adults, including deficits in social communication and interaction as well as rigid, recurrent, and constrained behavior patterns, preferences, or activities. This is the definition that many people accept and are commonly known. There are also opinions and groups that oppose the idea that autism is a disorder that needs to be corrected. Some autistic individuals engage in activism to defend their own rights and the rights of people diagnosed with autism. In this activism process, autistic activists also state that the source of the problems experienced by autistic individuals is society. In other words, according to this view, the sorun is not the autistic individuals and their behaviors, but the exclusionary and discriminatory society and violating the rights of autistic individuals. And instead of changing this discriminatory mentality and behavior, society demands and expects autistic individuals to change. Although it can be explained briefly in this way, there are many more things to be written about the concept of Neurodiversity and the rights -based
advocacy of autistic activists.
Actually, the autistic self-advocacy movement is still very new. The voices of autistic rights defenders and autistic individuals have been heard for a very short time. As specified by Leadbitter et al. (2021), the early autistic social groups of the 1990s turned up the autistic self-advocacy movement and the autistic culture that claimed autism as a viable mode of existence. Autistic individuals, who want to be accepted as they are, continue to act in this context since then. With each passing day, their voices are heard more and they reach more supporters. The widespread use of the internet and social media is one of the reasons why autistic activists and neurodiversity advocates are able to raise their voices to a wider audience. At the same time, the number of researchers and clinicians working on neurodiversity and publishing articles has also increased. Thanks to the internet, these researches can be accessed by more people and they can have information about neurodiversity. In addition, autistic individuals can reach various groups and platforms through social media and cooperate with other autistic individuals. Families of autistic individuals can also reach the families of other autistic individuals and form a solidarity network. All of these developments have happened over time, thanks to autistic activists and neurodiversity advocates and researchers. Developments continue to
increase.
Now, neurodiversity movement and the activism of autistic individuals will be examined in more detail and some factors and situations that affect the well-being of autistic individuals will be examined in more detail.
Another aim of this thesis was to give a voice to autistic individuals and their families. Since I could not come across autistic individuals who could answer the questions directly, they do not have their statements, but I wanted to include the experiences of their parents and family members. In addition to academic articles and literature review, I think it is necessary to give them a word. In this thesis, I wanted their voices to be heard. I asked some questions to parents and family members of autistic individuals. My aim was to make the experiences of autistic individuals more visible. I asked some questions to parents and family members of autistic individuals. My aim was to make the experiences of autistic individuals more visible.
To summarize, I am against the violence and discrimination that autistic individuals are exposed to in society. I think that states, governments, lawmakers and law enforcement are also partners in this discrimination and produce discriminatory policies. At the same time, they do not take precautions and studies to protect autistic individuals from violence and violations of rights. Governments and states do not grant autistic individuals the rights granted to other neurotypical individuals in society. I am also against these policies and I want them to produce policies that are inclusive, against violence and violations of rights.
This discriminatory policy of the government and the state is actually based on a mentality.
It is possible to say that individuals in society generally carry this mentality.
They view autistic individuals as “incomplete”, “wrong”, “flawed”, “sick”, or “worthless”.
They blame autistic individuals when there are situations in society where they can not
adapt. What I am advocating is this: The sorun is not with autistic individuals. The sorun lies in the state, the system, and the discriminatory mentality of the society that produces discriminatory policies. Society violates the rights and boundaries of autistic individuals. And they have an attitude of accusing autistic individuals.
At the same time, I tried to emphasize that this mentality is wrong in my thesis. And at this point, I also support the neurodiversity movement. I find it wrong to label autistic individuals with adjectives such as “sick”, “wrong”, or “incomplete”. These labels cause discrimination and cause autistic individuals to be isolated from society. And doing so is violence, violation of rights and violation of borders.
There is a group (autistic individuals) whose rights have been violated, and it is necessary to focus on those who engage in acts of discrimination and violence, not on autistic individuals. I support the neurodiversity movement because it seems to me that autistic individuals want to be changed by society in general, and this is not wanted for their well-being or safety. I think this is a strategy used by the neurotypical society to not make room for them and not recognize their rights. They do not want to accept them as they are in society and try to change them. And in doing so, they put pressure and stress on autistic individuals. This is violation of rights, violation of boundaries and violence. I think they want to change autistic individuals not for the sake of autistic individuals’ well-being, but for themselves.
For example, they try to limit and change the body language or facial expressions in which autistic individuals express themselves and their feelings, or the sounds they make. And they do this under the pretext of “adapting to society”. However, this is not “adapting”. Society should not interfere with their existence. After all, why is such an imposition being made? Because the harming party is the neurotypical society, and the harmed party is autistic individuals. To me this is very clear. And the “adaptation” they talk about never happens. Because their eyes are on autistic individuals and they cannot create the individuals they are trying to create. Although they do not have such a right, they do not question their own behavior and mentality. They feel entitled to the domination and control they have established over autistic individuals.
The purpose of writing this thesis is not just to explain autism. Including the neurodiversity movement, the aim is to touch on the rights violations, violence, discrimination and border violations that autistic individuals are exposed to in the family, school and all aspects of society. While addressing these, it is also to touch on the discriminatory mentality and behaviors of the neurotypical society that are the cause of them. In other words, the sorun is not the existence of autistic individuals. They are not “incomplete”, “wrong”, “flawed”, “mindless,” “wrong” or “sick”, or “disrespectful.” The reason for their problems is the discriminatory mentality and behavior of the society.
While the neurotypical society exclude them, it also violates their existing rights and boundaries. Autistic individuals are one of the disadvantaged groups in society and are seen as “vulnerable” or “powerless” by other individuals in the society. They can not get enough support from the state either. The basic human rights such as security, housing and education are not provided by the state and are even usurped. They experience many problems because of the discrimination and violence they face in their families and in all areas of society. And they also experience many psychological difficulties. Such as depression, anxiety, panic attacks, self-confidence problems. They may also experience psychosomatic problems.
At the same time, many parents with autistic children do not or cannot form secure bonds with their children. Children who cannot get trust in life from their families become more vulnerable and insecure when they are exposed to bullying, violence, violation of rights, violation of borders and discrimination in school or on the street or in any area of society. In order to protect children against rights violations and violence in the outside world and to create resilience, it is very important for parents to be able to form a secure bond with their children. Thus, children feel safe in the outside world. Express themself comfortably and confidently, know their own rights and the rights of others. When they experience violence and violation of rights, they do not have any difficulty in explaining this to their parents, and they want to tell their parents comfortably. They tell about the events that upset, disturb and scare them to their parents, but they also tell it when they are happy. In other words, they know that they have a parent or parents that they can tell about what happened to them and their experiences in the outer and inner world. They know that their parents won’t be angry with them when they tell them what’s going on outside and inside. They also know that their parents will be there for them. They know that their family will not let them down and will protect them.
It is very likely that children whose parents do not or cannot establish a secure bond with them also have problems in their relationships with other people in the future. This is even more prominent for neurodiverse and autistic children. Because the way they express themselves is different and they are not generally accepted by society. So, in addition to not making an effort to understand and communicate with them, society also excludes and discriminates against them. And, society responsible for that.
All these violence, violations of rights and borders, discrimination, bullying and disrespect are conditions caused by the neurotypical society. And it is solely responsible for the neurotypical society, government, state and politics. Autistic individuals cannot be held
responsible.
Autistic individuals are not responsible for the discrimination, violence, rights and border violations they are exposed to in society, but these situations affect them psychologically very badly and have negative consequences. In other words, they are badly affected by these situations, which are not even their own responsibility. And although the neurotypical society does not take responsibility for changing these negative consequences, it puts this responsibility on autistic individuals. In other words, it is the mentality of the neurotypical society and state policies that actually harm and cause negativities and violations of rights in the lives of autistic individuals and their families.
These discriminatory and violent policies are not met with reaction by the public and are adopted instead.
In this thesis, possible answers are sought to the question of how to improve the well-being of autistic individuals. This thesis also advocates for the neurodiversity movement. It is aimed to raise awareness about autistic individuals, the behaviors done to them, the perspective of society towards them, discriminatory policies and behaviors in people who
read this thesis.
At the same time, family members of autistic individuals were interviewed and the feelings, thoughts, actions of autistic individuals and the attitudes of the society towards them were tried to be better understood and shown in that way.
And what is meant to be explained in this thesis is to emphasize the violence, discrimination, violations of rights and borders that autistic individuals are exposed to due
to the state, system, mentality and behavior of neurotypical individuals in society.
Because they harm autistic children and adults physically and psychologically. There are prejudices against autistic individuals in the neurotypical society, and people with this prejudice harm autistic individuals with their behaviors and discriminatory attitudes. Autistic individuals are exposed to discrimination, violence and marginalization in institutions such as family, school and workplace. The meşru and judicial system is also inadequate and indifferent to the discrimination and violence inflicted on them. Autistic individuals exposed to many forms of violence may experience self-confidence, self-esteem problems, psychological problems and/or psychosomatic problems. They may have trouble regulating their emotions. And this can be even more challenging for autistic individuals who have difficulty expressing their emotions.
This thesis also addresses the social difficulties and psychological disturbances that autistic
individuals already experience or may experience. I do not think that there is sufficient
knowledge and awareness in the society about these issues ans problems of autistic people. And the sorun of empathy combined with this ignorance of the neurotypical society and
the motivation to exert authority/pressure cause serious harm to autistic individuals.
Chapter 1
Autism and Neurodiversity Movement
Although many people have heard the concept of autism in daily life, even in popular media, TV series and movies, books, or social media, many people do not have accurate and sufficient information about autism. Not everyone has come together or communicated with children or adults diagnosed with autism. Even many neurotypical people who have communicated or have tried to communicate cannot communicate correctly and healthily with autistic individuals. Autistic individuals who can express themselves and want to act for their own rights formed and advanced the neurodiversity movement and tried to explain themselves and autism, and they are still in this effort.
Before the neurodiversity movement, and still, there are other views and “methods” applied to autistic individuals, which are especially advocated by the parents of autistic individuals and which they deem necessary and important for their children. One of these views is that autism is a disorder that needs to be treated. So much so that parents who have this idea argue that there are some methods and behavior change studies that are “suitable” for their children and will “integrate” them into the society, and that some of the problems their children experience can be solved in this way.
Unfortunately, in the majority of society, autism is still seen as a disease, disorder, disability, a wrong and abnormal condition that needs to be corrected. Parents and family members of autistic children may also be among those who hold this view. While there is an opinion that wants to “cure” autistic individuals with medication and argues that they should be treated, there are also those who argue the opposite.
As explained by Kapp et al. (2013), while the medical model advocates causation and treatment, the neurodiversity movement celebrates autism as an integral part of one’s identity, and this is how the neurodiversity movement challenges the medical model. Autism as a treatment-free positive identity is linked to self-identification as autistic and neurodiversity awareness, revealing key distinctions between the medical paradigm and the neurodiversity movement. At the same time according to the results, significant intersections were found in these approaches to autism. Adressing of the disadvantages of autism and approval of parenting methods that celebrate and improve but do not remove autism did not differ in relation to autism or awareness of neurodiversity. These results support a deficit-as-difference view of autism in which neurological conditions may be seen as equally valid paths in the diversity of human
beings.
Although all these developments are very important in terms of accepting the rights and existence of autistic individuals, the neurodiversity movement and the view that autistic individuals are not “sick” or “defective” but “different” is still quite new. The words “autism” and “disease” or “autism” and “disorder” come together in the everyday language of common people and neurotypical people.
Neurodiversity perspectives declare the need to encourage social education, acceptance and adaptation of individuals with neurocognitive differences. In the previous years, there has been a broaden divide between autism intervention proponents and neurodiversity advocates, whose efforts to accommodate or mediate differences often result in antagonistic exchanges or stalemates (Shuck et al., 2022). In fact, the demands of neurodiversity advocates are for society to make more space for autistic individuals and people with neurocognitive differences, and to change the discriminatory and violent behaviors present in the neurotypical society. These demands may seem difficult or strenuous to individuals and institutions in the neurotypical community. Because it is seen that the vast majority of neurotypical individuals in the society do not want to make an effort to change the existing discriminatory and violent perceptions and behaviors. It seems that neurotypical individuals and institutions try to place the responsibility of “adapting” into society on individuals with neurodiversity. It is seen that society does not accept and strive to change perceptions and behaviors that include discrimination and violence, and force autistic people and people with neurodiversity to resemble neurotypical people. It can be seen that they are disturbed by the criticism directed at them by neurodiversity advocates and the perspective they take on autism, and instead of taking responsibility, they have a negative and even aggressive attitude towards neurodiversity advocates.
As mentioned by Schuck et al. (2022), clinical deterioration is a crucial precondition for diagnosis under the medical model, and such impairments are considered primary intervention targets to be addressed with clinical treatment. The “clinical deterioration” mentioned here should be handled very carefully. Are all perceptions and behaviors different from neurotypical individuals within the scope of this “clinical deterioration”? Are all behaviors of autistic individuals that do not harm themselves or others and that help them express themselves, but that are different from neurotypical individuals (for example, clapping hands, talking loudly, or repetitive movements) are also included in this definition? In other words, when the behaviors that are thought to be medically treated are “treated”, will this benefit autistic individuals? In other words, do the perceptions and behaviors that are tried to be changed by giving medications really harm autistic individuals or other people? Neurodiversity advocates and autistic activists oppose medical intervention and say it is a violation of rights. They state that the behaviors of autistic individuals that are tried to be suppressed and changed are functional for autistic individuals. And if it is taken into consideration that medication is taken in case of a disorder, if autistic individuals do not suffer from discomfort and their behavior does not harm anyone, it is necessary to think about why one would like to intervene. And at the same time, it is necessary to think about what bothers autistic individuals. Is autistic behavior bothering them or is it society’s attitude towards them? This distinction should also be made well.
As mentioned at the beginning, in world societies, we often see the grouping of individuals with similar characteristics and the exclusion of those who are different. Autistic individuals are also generally distinguished from neurotypical individuals with their perceptions and behaviors and are exposed to exclusion by neurotypical individuals in society. The majority of society characterizes and stigmatizes autistic individuals as disabled or ill. Within the rigid social model of disability, while individual differences may be associated with impairment, a person’s impairments do not cause an experienced disability if these people are accepted, incorporated and accommodated
by society (Schuck et al., 2022).
Autistic individuals face difficulties in many areas of life because they are not accepted by society. They are exposed to insults and labels such as “disabled, retarded, sick, flawed, incomplete”. While many people directly violence and discriminate against autistic individuals by expressing these, there are many people who think this way but do not express them in words. Even if they do not express these thoughts, these thoughts are reflected in the behavior of people and they feed the discrimination and violence against autistic individuals. And even if these discriminatory attitudes and behaviors are not clearly done, autistic individuals may notice and this affects them badly, and they can have traumatic experiences for them.
While considering the concept of disability, it can also be considered whether people are uncomfortable with the situation they are in, whether this situation harms them or whether it negatively affects their daily lives. Do the characteristics and socially unacceptable behaviors of autistic individuals harm them or others? If it doesn’t harm, why are these features being asked to change? Or will changing these traits really benefit autistic individuals? According to this view why are autistic individuals required to exhibit behaviors that are considered appropriate for society? Is it because the neurotypical individuals in the society want it, or is the “adaptation” they mentioned really demanded because it will increase the well-being of autistic individuals?
Opinions about autism and autistic individuals have also changed over time. According to Schuck et al. (2022), in the United States, cultural and societal norms changed from the mid-to-late twentieth century, resulting in changes in views on autism and autism intervention. In the 1940s, autism was gradually introduced as its own separate diagnostic category. Although there are scientific research and studies on the causes of autism, there have also been different non-scientific ideas, and unfortunately these thoughts have continued until today. Among these considerations, the factors that cause autism are the attitudes and behaviors of parents, especially the mother. Because of this wrong assumption, the number of individuals in the society who have a blaming attitude towards parents, especially towards the mother, is too high to be underestimated.
This blame is also seen among the parents themselves. So one parent can blame the other parent. Parents who think their children are autistic because of their own behavior or “mistakes” or who are exposed to this pressure from society or their own families also blame themselves. As a result of blaming themselves, they may experience many psychological problems and this can lead them to a sense of guilt. They may reflect their negative mood to their autistic children as a result of the psychological problems they experience due to the feeling of guilt and subsequent negative emotions. In addition, these negative moods they enter will also be reflected in their behaviors and their behaviors will negatively affect their autistic children. In addition, children who see, realize or feel that their parents’ relationship is impaired will be affected negatively. According to Schuck et al. (2022), in autism, the person or their family is no longer held responsible and instead autism is seen as part of biology. In other words, autism is not caused by the behaviors or attitudes of the parents. This innate and biological situation is not seen as the fault of the parents. According to the neurodiversity movement, autism is not “wrong” or “deficient”, nor is the autistic person or their parents “guilty”. Therefore, being autistic or having a autistic family member is not something to be blamed for. This attitude does not blame people and does not make them feel bad and guilty because their relatives are autistic. This attitude is very important in order to protect the psychological health of autistic individuals and their parents and their families. At the same time, it is very important for autistic individuals not to be negatively stigmatized.
The neurodiversity movement argues that autism is not a disorder or disease, and that autistic individuals are not sick or defective. The first thing that comes to mind when talking about neurodiversity movement is usually autism. Schuck et al. (2022) point out that the neurodiversity movement, which extends beyond autism to capture multiple domains of neurodevelopmental difference, differs primarily from the Autistic advocacy movement in its broad scope. On the one hand, while the neurodiversity movement opposes changing the behavior of autistic individuals (if it is not harmful to the person or the environment) and does not limit neurodiversity to autism, on the other hand, there are people who try to change the behaviors of autistic individuals.
Efforts and studies to change the behavior of autistic individuals are not carried out only by parents of autistic children. There are also some methods put forward by some researchers and clinicians who predict that behavioral change can be applied in addition to drug “treatment” or separately from drug “treatment”.
On the other hand, autistic activists oppose society focusing on and changing their behavior. They claim that there is no sorun in their own perceptions and behaviors, the sorun lies in the discriminatory perspective of the society and in the system developed for neurotypical individuals. They want to be accepted and respected with their autistic existence, rather than trying to change their own behavior to “fit” into society. They reject the obligation to behave in the ways society wants, and they oppose methods to change their behavior. They see this as a violation of their rights. While autistic activists think so, interventions for the behavior of autistic individuals appear as some practices. These forms of intervention have become known and applied in many countries. ABA (Aplied Behavior Analysis) is also a method of behavior intervention.
According to Schuck et al. (2022), although neurodiversity advocates generally want to supply sufficient support to raise the quality of life of autistic individuals, the outright negative experiences of many autistic individuals have fueled strong opposition to ABA interventions in many quarters; so much so that even the ABA discussion is seen as triggering or prohibited in some online groups (e.g., Ask me, I’m Autistic (24 h rule!), n.d.).
However, there is also the accepted view and practice of ABA in many parts of the world. Many institutions and private education centers in Turkey still use ABA and speak highly of ABA. They feature ABA on their websites and promotions as “a useful method that has proven to be scientifically effective.” Some even refer to it as the “best and most effective” method. At the same time, they claim that this practice is very effective in increasing the education and welfare of autistic individuals. It is seen that people working in many institutions and private education centers record videos of autistic children and adults while ABA is being applied, and they share this with praise on their social media accounts. Here, it is necessary to mention the ethical problems caused by the fact that videos of autistic children, as well as adults, are shot and shared during education, and that ABA is praised and institutions or individuals are promoted in this way. In the aforementioned case, it is seen that autistic individuals from all age groups, especially autistic children, are used to promote ABA methods and these images are shared on public platforms.
Methods for changing the behavior of autistic individuals are very controversial. Autistic activists and neurodiversity advocates strongly oppose these interventions and state that they are a violation of rights and harm autistic individuals. As reported by Schuck et al. (2022), before attempting to extinguish the behavior of autistic individuals, interventionists need to decide whether the behaviors are truly harmful (for example, potentially or actually self-harming, aggressive or destructive). If the behaviors of autistic individuals are not harmful to themselves or others, why do neurotypical individuals want these behaviors of autistic individuals to change? If these behaviors have a function for autistic individuals to express themselves, these behaviors are important for the well-being of autistic individuals. This pressure and desire to control that neurotypical individuals and neurotypical society exert on autistic individuals is a violation of rights and is violence against autistic individuals.
Autistic activists and neurodiversity advocates argue that these behaviors to be intervened are functional for autistic individuals. They state that it would be harmful for autistic individuals to try to change or destroy these behaviors. In addition, it is necessary to know and spread the neurodiversity movement for this purpose.
More precisely, neurodiversity-informed pedagogy should be incorporated into current clinical programs to improve the training of professionals and to empower professionals to work with autistic people and their families as “neurodiversity advocates”. By recognizing these issues, clinicians are in a position to present a more balanced perspective that incorporates discussion of personal strengths and supports acceptance (Schuck et al., 2022).
It is a known fact that autistic individuals are exposed to discrimination and marginalization in all areas of society. Most neurotypical individuals in the society are unaware of the neurodiversity movement or do not deva whether autistic individuals are visible in the society or not. While this is the case, the fact that professionals who communicate directly with autistic individuals do not respect the rights of autistic individuals will cause serious harm to autistic individuals. The attitude of professionals and clinicians is very important for autistic individuals to feel empowered and accepted.
Professionals and clinicians can also be role models for individuals in society. Their behaviors towards autistic individuals and the information they give about autism and autistic individuals will affect the attitudes of individuals in the society and autistic individual’s families towards autistic individuals. It can be predicted that people who can understand autism and autistic individuals within the scope of the neurodiversity movement will reduce the rate of discrimination and violence against them, and autistic individuals will be able to take their place in society more easily. Attitudes and discourses of professionals and clinicians can be very useful in raising the awareness of the society.
Most autism researchers are trained to acknowledge autism as a brain development disorder, an unwanted deviation from the norm (Pellicano & den Houting, 2022).
The terms “disorder” and “unwanted deviation from norm” need to be discussed here. Neurodiversity advocates oppose seeing autism as a disorder and state that the “disorder” label increases the stigma applied to autistic individuals in society. In addition, if the concept of illness is handled as situations that disturb the person and make their life difficult, is it autism and autistic characteristics that make the life of autistic individuals difficult, or is it the “norms” imposed by the society and the discrimination and violence it applies? For example, clapping or shouting in class is considered out of the norm and not appropriate by society. However, when society and neurotypical individuals do not try to understand why autistic children do these behaviors, and these children are exposed to discrimination and violence due to these behaviors, the situation that is tried to be changed and focused on is the behavior of autistic children and autism. Perhaps at this point, it is necessary to think about power and control mechanisms. Unfortunately, autistic children and autistic individuals are left defenseless against neurotypical individuals and are in the minority. For this reason, it seems easier for society to try to eliminate their behavior and
to comply with the “norms” they have determined and to maintain “order”. Trying to correct the violent and discriminatory behaviors of neurotypical individuals who are in the majority and hold power mechanisms against autistic individuals and creating spaces where autistic individuals’ needs will be met and they will feel safe becomes a more undesirable situation for a neurotypical society.
Autism and autistic individuals are generally regarded negatively in society. They are defined as individuals who are wrong, incomplete or unable to do things as they should.
Or, it focuses only on the negative situations that autism causes in the lives of individuals. The good features of autistic individuals are ignored. Of course, the definitions of good and bad here can also vary. Or, the positive features that autism brings to individuals are ignored, and the features that do not fit the social and neurotypical perception and are described as negative are given priority.
As reported by Pellicano & den Houting (2022), the traditional medical approach that explores impairments and functional deficits in autistic people and often seeks to divert attention from certain strengths of autistic people has unintended consequences, such as concentrating solely on restrictions, whether real or perceived. In other words, it is far from telling what autistic individuals can do and emphasizes what they cannot do. Autistic individuals may have many skills that neurotypical individuals can or cannot do. The concepts of success and talent have also been determined socially and culturally and have been shaped according to the perspective of neurotypical individuals. From this point of view, it is likely that neurotypical individuals will tend to ignore the abilities and skills of autistic individuals.
It is thought that autistic individuals are behind neurotypical individuals in many areas. One of these thoughts is that cognitive capacities are less than neurotypical individuals. As stated by Pellicano & den Houting (2022), there are many cases of traditional autism research explaining that autistic people perform better on scientific tasks than nonautistic people, but interpret these achievements as somehow revealing a sorun. This interpretation shows that there is a state of disapproval against autistic individuals, as well as among researchers. In other words, the opinion that autistic individuals are deficient, inadequate and defective in the society composed of neurotypical individuals prevails, and even though autistic individuals perform better in tasks, this situation has not been accepted by the researchers and has been interpreted as seeing autistic individuals as unsuccessful. In other words, the competencies of autistic individuals in any subject were not accepted and they were exposed to prejudice. This actually makes people question the results of researches involving autistic individuals and the studies on this subject.
While the situations and issues in which autistic individuals are successful, their abilities are ignored, in addition, the neurotypical society puts the responsibility of the difficulties they experience on them. Thus, the neurotypical society does not take responsibility and ignores the real sorun and blames autistic individuals. According to Pellicano & den Houting (2022), adopting the individualistic starting place implies that the “fault” of difficulties in life lies with the individual, and the burden of “repairing” perceived difficulties also lies with the individual. According to this view, autistic people are perceived as somehow “defective” or “faulty” and individual treatment is thought to be necessary to correct these deficiencies. It is clear from autism research and practice that autistic people are generally expected to overcome their “impairments” to reach a typical level of ability. So treatments and interventions are designed to change, reduce or improve the behavior of autistic children to achieve these core goals. This view demands a change in behavior from autistic individuals under the name of “treatment” and places the responsibility of the difficulties experienced by autistic individuals in society on autistic individuals. This perspective imposes neurotypical behavior patterns on autistic individuals and does not respect autistic individuals’ unique characteristics and being as they are. This view sees the non-neurotypical behaviors of autistic individuals as faulty and disordered and argues that these behaviors should be corrected. It argues that autistic individuals should also be “treated” and that they can adapt to society in this way.
Ne’Man (2021) point out that, the neurodiversity movement argues that autistic traits inherently do not need correction and that the purpose of autism service delivery and research is not to make autistic people non-autistic, and autistic adults have criticized the promotion of this indiscernibility through this movement. Neurodiversity advocates criticize interventions that try to suppress autistic features in favor of “passing” for example, trying to hide stigmatized identity by pretending to be a member of the unstigmatized majority. Passing has been linked to significant harm in both disabled and non-disabled contexts. Attempts to pass have been one of the identified risk markers for suicidality in autistic adults. This kind of “camouflage” is also linked to other mental health issues.
While not accepting autistic individuals as they are, trying to change them causes great harm to them psychologically. If the autistic traits that enable autistic individuals to freely express their feelings and thoughts are wanted to change so that they behave like neurotypical individuals and because neurotypical individuals want it, they will have difficulty in expressing themselves at this point and they will lose their motivation to communicate with neurotypical individuals and society. Because they are not accepted as they are and their existence is not respected, they will have problems with self-esteem and self-confidence, and they will not be able to feel belonging to society and will feel lonely.
In fact, these psychological problems can become so great and serious that they can even lead to major depression and suicide.
It is very important for autistic individuals to be able to express their feelings and thoughts comfortably so that they can express themselves, form relationships and regulate their emotions. They do this through their behavior. Trying to suppress and change their behavior can cause stress, feelings of worthlessness and inability to express their feelings, resulting in self-confidence problems, feelings of loneliness, feelings of not being accepted, and many other psychological problems, even psychosomatic problems as a result.
Different thoughts and questions may arise about accepting the autistic characteristics of autistic individuals. If autistic individuals have behaviors that are harmful to themselves or others, one may wonder whether these behaviors are also included in the “acceptance” advocated by neurodiversity advocates. As specified by Ne’man (2021), those who think that neurodiversity’s emphasis on acceptance is incompatible with severe disability argue that this acceptance should only appeal to autistic individuals with less disabilities. This perspective misinterprets the claims of neurodiversity. Neurodiversity advocates often support autistic people to improve their adaptability. In other words, according to this view, neurodiversity advocates do not support autistic individuals if they have harmful behaviors to themselves or others. This perspective also cares about the physical and psychological health and safety of autistic individuals. It gives importance to the safety and health of both autistic individuals and other people around. It advocates to prevent possible harm and danger to anyone.
Just as it is now recognized that it is barbaric to surgically reshape the eyes of individuals with down syndrome so that they appear olağan, neurodiversity needs us to regard as unethical measures to impose typical appearance simply to keep away from stigma. Regardless of the severity of the impairment, it is problematic to suppress autistic traits in order to promote the typical appearance of autistic people, but it is not problematic to do so while reducing personally upsetting or damaging behaviors or improving skills (Ne’man, 2021).
In other words, the neurodiversity movement opposes changing the appearance or behavior of autistic individuals just because the society wants it. Such an intervention would be a violation of rights, violence and abuse. Unfortunately, autistic individuals are frequently exposed to such interventions. While these interventions violate the rights of autistic individuals, they also cause great harm to them psychologically. These interventions can cause autistic individuals to feel unaccepted, inadequate, unimportant, worthless, and alone. They are likely to feel under intense stress due to these interventions. They may feel compelled to distance themselves from society and be isolated. In addition, they cannot express themselves comfortably in a society that tries to suppress their feelings, thoughts and the way they express them, and this brings along many psychological problems, self-confidence and self-esteem problems.
But that may not always be the case. Changes to be made and intervention in behavior may be necessary for autistic individuals or may be to their advantage. This distinction should be made very well. As explained by Leadbitter et al. (2021), a balanced assessment of neurodiversity acknowledges that, that although diversity confers fundamental collective advantages, individual weaknesses are often inseparable partners of strengths in any neurodifference, and people may want things to change while yet wanting to be themselves. It comprises the opinion that certain variations are disadvantageous, either inherently or in interaction with the environment, and might benefit from intervention that is appropriately targeted. Accordingly, some features of neurodiverse people and autistic individuals may be disadvantageous for them and they may want these features to change. But they may also want to protect their identity. And it is in the context of the concept of neurodiversity that appropriate interventions can be made to change the traits they consider to be disadvantaged. That is, the neurodiversity movement argues that if an intervention is to be made, it should be done without trying to suppress and prevent the identity of autistic individuals. In other words, it is clear from here that the aim of the neurodiversity movement is to facilitate the lives of autistic individuals and to increase their well-being.
According to Leadbitter et al. (2021), it is stated that there is a third implication for interventions related to the disadvantageous features of autism in itself. A balanced view of neurodiversity states that certain features of autism should not be viewed as pathological if these features do not harm or disturb the individual or violate other people’s rights. The fine line between supporting a child’s development and trying to change the essence of autistic individuals complicates autism interventions. Additionally, it is linked to the fine balance between adapting autistic behaviors and mitigating actually or potentially harmful cognitive or behavioral phenomena. This balance appears to be questioned by different views, due to differing views on what constitutes pain and the cause of pain, and difficulties in determining individual children’s views due to their young age, difficulties in communicating, and inability to understand potential future consequences. There is no simple solution to solve these complex situations. The neurodiversity movement is expected to be very careful about interventions that should or should not be done in the behavior of autistic children.
If necessary, the behavior of children should be intervened without harming their selves and without suppressing them. This requirement was not easy to detect. Taking deva of the child’s wishes and needs should be a priority. Even if the behavior is to be intervened, it must be harmful to the child or the people around. It is necessary to dwell on the concept of “harm” here. For example, if suppressing these behaviors of some autistic children who speak loudly or scream to express their feelings harms those children, why is this pressure being applied by the society? Children may be under stress or in an environment where they cannot express themselves comfortably. Or even if it’s not, doing this behavior makes them feel good, happy, or they may be expressing themselves through this behavior. In this case, focusing on this behavior of autistic children mentioned here and trying to change this behavior will harm autistic children. And is it really hurting other people around when these autistic children are talking and screaming loudly? Or is this a pressure created by society’s indifference towards these children? It will be very important to dwell on these
questions.
Chapter 2
EMOTIONS IN AUTISM
Expressing emotions is very important for human relations and self-expression. At the same time, for a healthy emotional state, it is necessary for the individual to be able to define and express their emotions in a healthy way.
Being able to identify and express emotions is also extremely important for autistic individuals. Autistic individuals may differ from neurotypical individuals in expressing their emotions. Researchers have been curious about how autistic individuals feel and how they express their emotions, and some research has been done on this subject. There are studies on the emotions of autistic individuals.
Many individuals are raised from childhood without being encouraged to express their feelings, even fearing or hesitating to express their feelings. Although we see that this situation is more common in some cultures, education systems and social expectations around the world prevent children from expressing their emotions. This situation is more intense for some groups than for other groups. It is more common for girls compared to boys in places where patriarchy is intense and in fact worldwide. Girls are more likely to encounter external obstacles in expressing their feelings and thoughts. (Like society expects them to remain silent and unresponsive or “kind”) This is related to sexism, another form of discrimination that is prevalent around the world. These barriers are also more pronounced for individuals with neurodiversity and autistic individuals. They express their emotions in different ways than neurotypical individuals, and their emotions and related behaviors are more difficult to understand and accept by society.
The inability of a person to express or accept their feelings can bring along many psychological problems. Children may be unable to express and suppress their emotions because of their family or society. This situation can be traumatic for them. And it is predicted that autistic children will be more likely to be exposed to this trauma than neurotypical children. Children cannot express their emotions in a healthy way unless they are encouraged to express their emotions. This creates an obstacle for them to develop a self-confident and healthy, cohesive self. Children who cannot accept their own feelings and are prevented from expressing themselves in a healthy way have difficulties in expressing themselves and have self-confidence problems. This has a negative impact on their personality development. They may experience many psychological problems such as depression, anxiety, panic attacks in this time of in the future. This situation reflects negatively on their relationships with other people and they may not be able to express themselves. Children who feel that their feelings are not accepted cannot feel safe with their families and in society.
Emotion regulation is equally important to all children and is a skill they can acquire from their parents. At this point, the families of autistic children have a very important role to play. Because they themselves are often under stress due to their children’s situation and the discrimination and violence their children face in society, and they may be more likely to reflect this stress on their children than neurotypical parents.
2.1 Happiness and Fear
Happiness and fear are the basic common emotions that people feel. Emotion recognition and empathy skills are very important for understanding other people’s emotions. Being able to understand the feelings of other people is also very important in order to establish a healthy communication and relationship.
There is and continues to be research on these emotions in neurotypical individuals. There are also studies conducted for autistic individuals. There are studies on emotion recognition of autistic individuals. These studies seem to have found different results.
Uljarevic & Hamilton (2013) reports that, the findings show that emotion detection is difficult in autism, and the average effect size decreased from 0.80 to 0.41 when publication bias was taken into account. Autism slightly impairs the ability to recognize happiness, while the ability to recognize fear is slightly worse. This result may not seem positive for autistic individuals, especially in terms of happiness and fear recognition. But the reasons for these results need to be investigated. These studies can be evaluated as supportive in terms of communication to be established with autistic individuals, education and psychosocial support that should be provided to them. Of course, every autistic person and every autistic person’s autism is unique and the results cannot be generalized for everyone.
According to Uljarevic & Hamilton (2013), individual emotion recognition was analyzed across 16 studies that provided ample veri, and it was found that individuals with autism had trouble recognizing the five core emotions but not recognizing happiness. Temporary evidence has been found to suggest that fear is worse recognized than happiness, but no difference was found between happiness and sadness, surprise or disgust. According to the results of the studies mentioned here, it was mentioned that autistic people have more difficulty in recognizing fear than other basic emotions. There was no difference in the difficulty between recognizing other emotions.
As mentioned by Uljarevic & Hamilton (2013), there was a hint of certain difficulties in comparing the recognition of happiness with the recognition of fear, with a marginally significant difference. Various theories predict poor fear processing in autism rely on neurological and behavioral descriptions. Identifying the factors that reveal the results of these studies may be beneficial for autistic people. These results can be usefully used to produce more appropriate and beneficial communication methods, education and psychosocial support studies for autistic individuals, rather than stigmatizing them. But intent is very important here. Interpreting these results to label autistic people as “deficient” or “defective” will be very harmful. Abusing these results will harm autistic
individuals.
2.2 General Emotions
Autistic individuals are seen as “deficient” in many areas by society and it is thought that they do not have many skills that neurotypical individuals have. One of them is emotions. In addition to being seen as cognitively “deficient” in society, autistic individuals are also thought to be emotionally “deficient”. But research and studies show that this is not so.
As mentioned by Mcgee et al. (1991), when preschool-aged children with autism were compared with children who had mental retardation and typical children, research has revealed that children with autism displayed no less affect than their mental- aged matched and typical peers. Moreover, children with autism exhibited more negative emotional reactions and maladaptive emotional blends than these two groups, and differed in their emotional display patterns. According to the results of this study, the “more negative emotional reactions and maladaptive emotional blends” of autistic children does not make them lacking in emotions. There can be several reasons for these “more negative emotional reactions and maladaptive emotional blends” to occur. These reasons may also be social. Also, what are the “maladaptive emotional reactions” to the neurotypical community? There is a reality that autistic children and individuals often find it difficult to adapt to society. And although the responsibility of this difficulty is intended to be placed on autistic children and individuals, the responsibility actually belongs to the society. In fact, it is not their sorun, as autistic children and individuals find it difficult to adapt to a society designed for neurotypical individuals, where there is a lot of discrimination and violence for them, and which ignores their own needs and wishes. The fact that the “Emotional display pattern” differs does not make them any more incomplete or flawed. It just makes them different. Just as autistic activists who advocate the neurodiversity movement have pointed out.
Mcgee et al., (1991) states that the differences found in the research are relatively complicated and contradict the traditional assumption that there are significant and direct differences between the nature of the nonverbal behavior of children with autism and that of typical children. In fact, children with autism do not differ from typical children in some essential ways in expressing their basic emotions such as happiness, sadness, and anger, but large discrepancies were seen between the nonverbal behavior of children with autism and typical children in terms of specific nonverbal displays. The particular prevalence of certain facial expressions does not help much in identifying children with autism. This is noticeable given that basic emotions such as happiness, sadness and anger occur at a comparable level between children with autism and typical children. Opposite to anecdotal clinical observations, no proof was found that children with autism show inappropriate levels of facial emotionality. But significant differences were found in situational contexts in which children with autism and typical children displayed various facial expressions. Typical children appeared to show happiness when communicating with a teacher or peers, while children with autism showed happiness when playing the on their own. There were also differences in the expression of anger; it was found that for typical children, anger is particularly common in the presence of other children, but for children with autism, anger is seen in situations where adults are present. In this study, it was observed that autistic children were able to perceive and express basic emotions. Autistic children and individuals are alienated and marginalized by society and are thought to have low perceptions. However, these studies show that autistic children are not deficient or inadequate in understanding and expressing emotions. Only their expressive nonverbal behavior differs from neurotypical children, but this does not make them inaccurate or incomplete. In addition, it has been observed that they differ from neurotypical children in the environments and situations in which they express their emotions. In other words, autistic children can understand emotions and express their own emotions. It was stated that “inappropriate levels of facial emotionality” were not observed in autistic children. It is also necessary to examine the definition of “inappropriate levels of facial emotionality” here. What is meant here is important. However, it has been observed that autistic individuals do not show this “inappropriate levels of facial
emotionality”.
It was found that children with autism could identify all six emotions with different intensity levels as well as children in the control group and made the same type of erros as the control group (Castelli, 2005). Autistic children also have emotions like neurotypical children and they show these emotions in various ways. For all children, whether autistic or not, some emotions can be more difficult to distinguish, perceive and make sense of than other emotions. It is thought by many people that autistic children have more difficulties in understanding, interpreting and distinguishing emotions than neurotypical children, and it is predicted that they are less able to distinguish emotions compared to neurotypical children. It is even thought that the perception level of autistic children is low. Autistic children are exposed to definitions and insults such as “deficient”, “faulty”, “flawed”, “failed” or even “stupid” by people with this wrong and discriminatory perspective. However, studies have shown that this is not the case.
It is also necessary to consider that studies on emotion recognition of autistic individuals are carried out by neurotypical individuals from a neurotypical perspective. Studies that deal with autism in the context of the neurodiversity movement or that are conducted jointly with autistic individuals or researches directly conducted by autistic individuals are unfortunately very new and limited in number. However, it is seen that this number is increasing and this is a positive development.
Castelli (2005) indicates that, in each of the three experiments; surprise, fear, anger and disgust were predicted to be the most complicated emotions, while happiness was predicted to be the easiest emotion to detect. As in the earlier naming task, it was observed that children with autism did not perform in another way than children in the control group, and expressions of surprise and fear did not appear to be a verbal barrier at any level of intensity for either group. It is assumed that the level of perception of emotions in autistic children and individuals is lower than in neurotypicals.
This assumption may feed into discriminatory perspectives in which autistic children and individuals are stigmatized as “deficient” or “defective”. However, there is research
showing that this is not the case.
These scientific studies are very important in terms of showing and making the public accept that the labeling and stigmatization against autistic individuals in the society has no scientific basis. Along with autistic children, families of autistic children can also be adversely affected by these prejudices of the society. The results of these scientific researches should be shared with parents and parents should be informed so that they are not affected by these prejudices and establish more positive relationships with their children. Having parents’ awareness will also have a very positive effect on their mental health. And when they have a healthy mood, this will positively affect their children’s mood and communication with them.
There is a thought and prejudice in society that autistic children and individuals “cannot perceive people’s emotions”. There are many people who assume that they have low perceptions. This assumption is again based on the idea that autistic children and individuals are more “deficient” or “defective” than neurotypical individuals. As mentioned by Castelli (2005), the outcomes of the studies revealed that children with autism can identify all six central emotions from people’s facial expressions as well as children in the control group. This was demonstrated not only when asked to match images of emotional expressions with different levels of intensity, but also when asked to cat
