Breaking BarriersBreaking Barriers: Toward a Neuro-inclusive WorldBreaking Barriers

This piece was written by Emil Koch.

Do you have a diagnosed neurological ”disorder?” If so, you might have wondered once in a while, “Why am I not ”normal”? Why can everyone else get along in this fogged world?”. Have you felt that some invisible layer separated you from your peers? If so, you are not alone. In fact, you are not disabled; a non-inclusive environment is disabling for everyone who does not fit in. Neurodiversity is a form of human diversity that is not pathological; a disability doesn’t necessarily arise from inherent deficits. It is based on differences in the brain structures of human beings and variances in sociability, learning, and mood. 

Although natural in variation, people on the spectrum continue to face barriers, stigmata, and discrimination undermining opportunities in higher education and work, worsening their mental health condition. Ethnicity, gender, culture, social norms, and values define acceptable behavior and human competence. Stigma describes some unwanted shadow on a person because of specific human differences deemed socially unacceptable or deviating from perceived norms, often connotated with assumed flawed psychological or physical states. 

According to the American Psychiatric Association, individuals with autism exhibit deficits in social-emotional reciprocity and non-verbal communication (DSM-5). These traits considered as “disabling” reflect the cultural value of sociality and outwardness. Though introversion may not be rejected per se, a recent survey showed that 9 out of 10 people in the UK feel pressured to behave extrovertedly. Introverted adolescents worldwide seek to belong but feel out of place. Nowadays, introverts struggle with being constantly put in places such as school that stress how different they are; hence, they feel misunderstood and might be hassled by their peers. Today’s society prevents many youth from finding a secure sense of home and belonging through expectations for sociability and sharing, for instance, in social media, which hampers free personality development and the forming of true friendships due to peer pressure. Later, some might feel alienated from themselves and their interests because they mirror social conformity. This, in turn, can hinder the quest after genuine passions and reaching excellence therein. 

Unfortunately, 70–80% of young people with autism spectrum disorder (ASD) experience depression and anxiety; over 50% have two co-occurring mental health problems, likely because of externally imposed societal norms. In fact, statistical analysis demonstrated a high prevalence of mental health conditions in individuals with autism, with 20% of them having an anxiety disorder, 13% having a sleep disorder, and 9% having obsessive-compulsive disorder, and people with autism are four times more likely to have depression relative to the general population. Several studies substantiate this data; however, the precise determination of prevalence might be challenging since people with autism manifest- to a greater or lesser degree – alexithymia, which is the difficulty of describing and identifying emotions. For instance, depression is hard to spot in people with autism since the processes occur internally, and without expressing emotions nonverbally, the “outer world” might never know. Nonetheless, the consequences of depression and associated conditions are visible. One in six autistic children will contemplate suicide in childhood, and two in twenty will attempt suicide. 

In an ever-changing world centered on continuous adaptation to technological change and significant transitions in life from school, college, to job life, people with autism gradually burn out from attempting to camouflage neurodivergence. Masking, a common practice in autistic youth, involves suppressing certain behaviors, intense interests, and natural expressions in an attempt to adhere to societal norms. Learning by copying other behaviors can generally be advantageous by sparing energy through collective behavior or automated processes. Yet, autistic youth expend valuable energy sources trying to mimic neurotypical behaviors and adhere to social scripts, leading to exhaustion and stress. This energy drain hinders healthy personality development to a point where individuals feel disconnected from their true selves. The toll on mental health, the 20% of youth with mental health conditions globally, serves as a poignant reminder of the shared barriers young people encounter as they navigate societal expectations and strive to maintain their authentic identities in a chaotic world. This is critical because mental well-being determines children’s abilities to evolve into resilient citizens. 

Further research shows that autistic people have alarmingly high rates of probable post-traumatic stress disorder (PTSD), up to 45%, compared to the 5% reported among non-autistic people. Of note, childhood trauma rates and autism correlated significantly in a study by Warrier and Baron-Cohen (2021). These findings emphasize the vulnerability of autistic youth to traumatic experiences and highlight the enduring repercussions on their mental health and overall well-being. In all corners of the world, children and adolescents are among the most vulnerable groups, whereby exposure to trauma appears to be prevalent among youth, with rates between 20 and 48%, according to Saunders and Adams (2014). Disadvantaged youth in low-socioeconomic families, disabilities, political prosecution, and warfare are examples of trauma stressors and sources of discrimination in education and job search. Social and ethnic segregation can fuel trauma and group prejudices in the aftermath. 

The social environment plays a crucial role in exacerbating these challenges. In the social world, parents and caregivers often feel pressure to discourage autistic children and adolescents from engaging in stimming (self-stimulatory behaviors) or repetitive behaviors, as these actions are not considered socially acceptable. However, these coping mechanisms are vital for autistic individuals to manage overwhelming sensations and emotions. The suppression of these behaviors further contributes to the burden of masking and the challenges faced by autistic youth in navigating a world that expects conformity to neurotypical norms. In essence, caretakers’ attempts to make young people with ASD more neurotypical can infringe upon their rights to dignity, self-determination, and autonomy. These cultural, social, and traditional barriers create a non-inclusive environment and societal pressure on neurodivergent individuals and youth worldwide to fit in, often at the cost of their authentic selves. This constant pressure impairs their authentic identity exploration, addressing their needs, and pursuing their passions. As a result, developing self-awareness and personal fulfillment presents significant challenges for young individuals, especially those with autism.

On a higher legal level, Prof. Baron-Cohen from the University of Cambridge asserted that autistic people’s human rights are not being met around the world. First, the fact that the educational systems are aimed at neurotypical people unintentionally builds a system of oppression, systematically ignoring special needs and attributing diverging behavior with IQ or non-conformity. Educational systems designed for neurotypical people systematically disadvantage neurodivergent people and limit their opportunities and access to education, disregarding special circumstances or disorders. While everyone is entitled to access to quality education, one in five children with autism has been suspended at least once, and the remaining 80% experienced bullying, affecting self-esteem and identity development and decreasing the potential to live independently. Although every child has the right to learn, one in six adolescents is not in school, and over 600 million children and adolescents do not reach proficiency in fundamental skills in mathematics and reading, impacting their health and economic prospects. 

Research shows that, especially in significant development and transition periods in life, people with autism exhibit more syndromes, such as anxiety or depression. The way those with autism may suffer with their mental health at the hands of a neurotypical world illustrates the story of Mathew, a young child with autism who has been rejected by local regular high schools simply because he needed special pedagogical support. Ultimately, he ended up at a school for intellectually disabled students. However, he was not disabled in any way. As a result, he withdrew socially, missed classes at school, and stopped opening his textbooks because he believed some tragedy would happen to his family otherwise. This may sound like a new story to many, but it was real for Mathew. In addition, he received poor education and insufficient therapy and accommodation support for years. Eventually, though, Mathew was granted therapy sessions, although they focused on treating autistic behavior rather than helping him with his depression and anxiety. The professionals tackled the symptoms instead of the root causes that initiated the vicious circle in the first place: daily stressors that led to negative emotions. By doing this, they caused more stressors and, thus, more negative emotions. Essentially, many people with autism mask their neurodivergence to fit in. As a result, people like Mathew struggle with daily stressors – varying in each case – that trigger mental health conditions such as anxiety, undermining their living quality and ability to unfold their potential since they constantly remain in a conflict between a sense of belonging and seeking the support they need. Many ”trouble kids” and gifted students do not receive the support for academic success, leaving talented children behind. Poverty, family issues, disability, and lack of teacher attention build mountains to overcome for youth seeking a quality education, thereby perpetuating educational disparities globally.

In today’s modern world, adolescents and children with ASD encounter multifaceted barriers beyond educational challenges. A prevalent issue revolves around their limited access to essential public services, particularly healthcare. While precise quantification of these disparities remains elusive, various reports underscore the marked differences in healthcare access between individuals with ASD and their neurotypical counterparts. One pressing concern is that a substantial portion of adolescents and children with ASD remain undiagnosed, often due to systematic stigma and a lack of fundamental services. This lack of early diagnosis and appropriate care puts their potential for leading healthy and fulfilling lives at risk. Given the need for early intervention in autism, gender poses another barrier in the context of neurodivergence. Nearly 80% of women with autism remain undiagnosed by age 18 because of a subtly different version of the phenotype, dismissed as shy or misdiagnosed altogether. When not correctly diagnosed in childhood, sensory and psychiatric symptoms may be worsened, causing poor academic performance and fewer chances in higher education and the workplace. Gender inequality encounters everyone daily; almost 20% of girls aged 15 – 19 are neither employed nor enrolled in an educational program. Shockingly, only 22% of individuals with autism in the UK are employed, according to the Office for National Statistics, which reflects the systematic bias against neurodiversity in hiring and interview processes. Young autistics or individuals with ADHD or any other neurodivergent condition receive fewer job and interview opportunities essential for career advancement because they presumably lack empathy and the necessary “soft skills” to succeed at work. Yet, these are neurotypical, unilinear conceptions that there are only specific ways of doing and communication that lead to a smooth job experience. Ultimately, gender, ethnicity, and neurodiversity pose significant barriers to access to healthcare services and job placements. 

The dark reality shows that the law does not equally protect autistics. 20% of individuals with ASD, seven times more relative to the general population, have been stopped and questioned by the police. Many crimes committed by individuals with ASD result from a communication disability or special interest in a particular topic. However, courts frequently disregard these potentially mitigating factors, failing to provide the necessary accommodations and understanding for fair and impartial trials. Such unequal treatment within the legal system reveals the persistent inaccessibility of unique needs and perspectives of youth minority groups. Such unequal treatment within the legal system highlights the ongoing inaccessibility of minority youth to their unique needs and perspectives. For instance, youth participation in politics and NGOs and freedom of speech are too often limited by the law. 

What if the whole world plays crazy? COVID-19 disrupted many livelihoods and caused deaths and uncertainty. It was also the time when socioeconomic and ethnic disparities widened and when autistics struggled with loneliness, aggravating healthcare access and unearthing the intersections of ethnicity, culture, and neurodiversity acceptance. Neurodivergence has long been considered a ”mere” mental health condition; however, cultural values and the societal perception of ”normalcy” have significantly shaped this perspective. In this regard, Strand and Lindorff (2021) found that Black Caribbean and Pakistani school children were overrepresented, marked by social, emotional, and mental health (SEMH) divergences.

In contrast, Indians and Chinese were underrepresented. Since the effects remained significant after controlling for age and socioeconomic backgrounds, it can be reasoned that differences in culture and traditions may play a role. Evidence from Papadopoulos et al. (2013) that people in collectivist cultures, such as Asia, derive their identity from a social rather than individualist identity on account of strong group surveillance suggests that the degree of undetected diagnosis lies higher in collectivist societies. The reason is that the individual experiences more pressure to fit in and avoid shame on the family in collectivist cultures than in individualism. In addition to cultural stress factors, the intersectionality of minority stress from different identities can confer higher stress burdens. For example, autistic people are 3.5 more likely to belong to a sexual minority than neurotypicals, yet specifically disregard their sexual identity because of their autism. All of these calls for conformity and minority stressors place undue pressure on young people to fit into predefined molds. The intersections of cultural values, societal norms, and the burdens of minority stressors can create a web of challenges leading to identity disruption, hinder academic performance, create difficulties in forming friendships, and contribute to the prevalence of mental health conditions among young individuals. The reasons for unmet autistic needs are complex and begin with YOU. As you read this, you are on the track of disentangling your blindspots. Nonetheless, the majority lacks awareness. Distorted media representations of ASD on the end of the spectrum undermine the support needed. For example, in the show, The Big Bang Theory, one of the main characters, Sheldon, is displayed as a genius scientist, yet his whole character is based on his social non-conformity, on his autistic-like traits, as if his ”disability” were his entire personality. Focusing on socially awkward situations resulting from social deficits in autism ignores how people with ASD feel and think, thus dehumanizing them. Be it a savant-like trait of hyper memory or atypical social behavior, too often, the media fails to portray people with autism as the people they are with their thoughts, feelings, and everyday struggles. When youth with ASD constantly feel like they do not fit into the world and nobody genuinely cares about them, it is understandable when they are at higher risk for mental health conditions. Hence, it is the stereotypes strongly associated with autism that hinder individuals with autism from getting tailored treatments and deny access to public services. We need to end the paradigm of ”fitting into” and rather design a neurodiverse world where all individuals can flourish and unfold their potential. The environment makes neurodiverse people” disabled,” and making it more inclusive will level the playing field for all youth globally.