• Shraddha Datta

Being Autistic

Updated: Jun 25

The negligible support for disabled people is what leads them to burnout during college. The impacts of burnout can be devastating on their mental and physical health. However, disabled people encounter many barriers to accessing resources that can aid in their recovery from burnout or help prevent burnout in the first place. Structural ableism silences any conversation about the struggles of disabled and neurodivergent people or even acknowledging their presence on campus. The absolute loneliness that disabled people are made to feel reinforces a negative feedback loop of burnout that is very easy to slip into.


The system is not designed to accommodate disabled people. Getting a diagnosis itself can be a lengthy, pricey—not to mention traumatic, if the doctor is uncooperative—process that is inaccessible to most. This makes accommodations at most institutional settings inaccessible. Thus, to survive in a discriminatory and intolerant world, disabled people are made to adapt themselves to a system that does not forgive any single misstep on their part.


Self-diagnosis is a tool neurodivergent people can use in lieu of a formal diagnosis when they do not have the means to acquire one. Most medical practitioners, including psychologists, do not consider self-diagnosis to be well-founded and thus the public may not consider self-diagnosis very seriously either. However, in my experience, the neurodivergent community accepts self-diagnosed individuals because they are fully aware of the difficulties many face in accessing legitimized medical diagnostic tests.


People do not self-diagnose themselves with conditions such as ADHD or autism without reason. They most likely have endured hardships in day-to-day life that cannot be simply caused by isolated incidents. It is extremely difficult to continue living life without any reasonable explanation for the cause of these hardships. For instance, in Grade 11, I fell sick a total of four times over the course of a year, grew extremely thin and experienced chronic fatigue. I conducted several blood tests to find out if there was any physical cause, but there was none. I just constantly experienced more stress than the average high school student.


It is true that many of the definitions of mental disorders and illnesses in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) can overlap with each other. It is also true that an individual knows their own experiences and hence knows themselves best. Before self-diagnosing, many in the community conduct thorough research and still hesitate to label themselves in fear of incorrect assessment. However, self-diagnosis is not ticking boxes off a checklist of symptoms found in the DSM-5 by yourself. It is giving yourself the space to look at your lived experiences in a different light, without which one can end up spending their whole life invalidating themselves.

Self-diagnosis can be used as a tool to find community among those who share similar struggles and to create new strategies towards tackling problems that respect your boundaries as a potentially disabled person. Thus, if self-diagnosis harms no one else, then there is no reason why it should not be considered an appropriate practice in the neurodivergent community. This is especially true given that even the bare minimum for healthcare services and mental health support is usually not met on campus. Personally, I underwent a massive shift in perspective of myself after having found a possible explanation for my mental and physical health issues. Instead of belittling and berating myself for not living up to neurotypical standards of work and productivity, I gradually became more compassionate and forgiving towards myself.


In more ways than one, most of us cannot afford the privilege of having the potential explanation for our struggles be legitimized in institutional settings. Given that there are racial disparities in the identification of autism spectrum disorder (ASD), people of color often end up with inaccurate diagnoses. Since there is a higher rate of diagnosis for boys than girls with ASD, and thus most researchers end up focusing more on how boys experience autism, there may have been a systematic distortion in measuring the true frequency of ASD among girls.


Still, I find myself scared to claim that I self-diagnose as autistic. Even with a formal diagnosis, autistic people face barriers to living as their authentic selves because of stereotypes shared by the public. Many casually use the r-word, which is relegated to something as seemingly trivial as “idiot” or “loser”. When thinking about autism, caricatures such as Maddie Ziegler’s character in Music, Sia’s directorial debut, come to mind. Such unrealistic portrayals in the media and otherwise negative connotations associated with autism do not make it easier to openly identify as autistic. Claiming to be autistic might put you in the spotlight for ridicule and invite others to dehumanize you. Or, on the other hand, they may not believe you because you don’t seem autistic enough, and thus invalidate you. Either way, I can no longer stand this dehumanization of the autistic identity whilst othering myself from it.


It is important to note that there is a power imbalance between autistic individuals and medical professionals who give out diagnoses due to their position of authority in the field. Such professionals often do not have the lived experience of being autistic, and if they do not listen to autistic people, are completely cut off from the realities of autism apart from what is defined in the DSM-5. For instance, most autistic adults claim that Applied Behavior Analysis (ABA) therapy was traumatic for them. Still, Autism Speaks, a well-funded organization that advocates for ABA, is considered to be the sole spokesperson of the autistic community within most institutional settings, especially in the field of psychology, even though most who are actually autistic claim that Autism Speaks does not speak for them. Thus, with or without a formal diagnosis, most autistic people are made to feel as though they have no ownership over their own identity.


Most students on campus find it difficult to arrange for accommodations with professors by themselves, even with a diagnosis. Supporting yourself entirely without adequate mental health resources can be frustrating, apart from it being exceedingly draining. I am tired of giving constant deliberate effort into taking care of myself, even if it is necessary to my daily survival on campus. I have tried talk therapy, I have written to the Dean of Accessibility, I attempted to get in touch with a psychiatrist through the Counseling Center—whenever and wherever I try to reach out for help, I always end up facing a dead-end.


I thought that if I continued to excessively organize my schedule, pace myself for assignments and monitor my energy levels every day, I would be able to debunk the “myth” that those characterized as “high-functioning” are inevitably on the path to burnout due to their support needs never being met. I thought that if I was maintaining and respecting my own boundaries just enough, while also somehow molding myself to be a desirably productive member of my college community, I would somehow be able to make it to the finish line of the year without experiencing severe exhaustion.


My friends tend to tell me that I “overthink”, and they’re not wrong. Overthinking is how most would describe my normal thinking process. I put conscious thought into every single activity that I take part in, just so that I don’t end up making a wrong decision that could put my mental and physical health into jeopardy. I’m constantly analyzing myself and pushing towards better strategies for self-care. But if my self-understanding has been severely impacted by society’s neurotypical standards, then how long can I continue supporting myself like this? If I have issues such as emotional dysregulation that can be extremely difficult to navigate alone, how long can I continue like this?


With an effort to better organize resources, disabled people’s support needs could potentially be met without taking away their right to autonomy and dignity of self. Everyone deserves to be treated like a human with their own thoughts and feelings. Structural ableism silences self-advocacy of disabled people against their own dehumanization. Here, it is important to note that independence is different from individualization. Looking at mental and physical health struggles as individualized phenomena can lead to passing around band-aids as a temporary cure to bleeding wounds, or otherwise leaving individuals to resort to their own devices for somehow stitching themselves up. We cannot support each other within the college community if we are struggling in complete isolation owing to our individual circumstances that are exacerbated tenfold by the lack of support on campus.


It is important to understand that many cannot afford the costs of diagnostic procedures that may or may not lead to accurate diagnoses, and that even after being diagnosed, many struggle to receive accommodations that meet their support needs. A lot of us have come to college to study what we love and pursue our passions, but it is not just that we run out of all our batteries before we even begin our journey as independent young adults. It is thus imperative to recognize the struggles of the disabled student body on campus and bring attention to the necessity for equitable access to adequate mental health support and healthcare services for improving the quality of life for disabled students, and other students who also require such support, on campus.






311 views0 comments

Related Posts

See All