Self-diagnosis of Autism doesn’t work for Black People
Exploring the negative impacts of self-diagnosis on people of color within the autism community.
I recently came across a TikTok video featuring an autistic content creator—a white woman and an engineer—who was in a dramatic chase with the police. The trend was perfectly accompanied by the evocative background music of "Died in Your Arms Tonight" by Cutting Crew. The caption indicated that when the police described the suspect as looking autistic, she turned around, seemingly flattered, and approached them. As a person of color, I was shocked by the insensitivity of the piece, but I can't say I was completely surprised.
Why? You ask?
The perception of autism often leans towards a predominantly white representation: folks who are high-masking, and low-support needs. A group of skilled communicators shares their experiences with autism, connecting with diverse audiences, including myself. Many individuals, particularly late-diagnosed or self-diagnosed 'white women,' are joining forces to reshape the narrative surrounding autism.
Women are frequently overlooked or misdiagnosed when it comes to autism spectrum disorder (ASD). This discrepancy occurs because diagnostic tools mainly focus on ‘white’ male behaviors and overlook how autism uniquely appears in women. For example, women frequently demonstrate greater social motivation alongside internalizing issues, such as anxiety and depression, rather than displaying the more apparent externalizing behaviors commonly linked to the disorder.
This also holds true for people of color, particularly within the Black community, where children are significantly underrepresented. Fewer Black children are diagnosed with Autism Spectrum Disorder (ASD) for the first time compared to White children as they grow older. I am currently undergoing the diagnostic process and have observed numerous biases, even in the way questions are being handled.
Many questions have been asked about whether I played with blocks or lined them up. I find these questions hard to relate to because I grew up in a poor family that didn’t have access to many toys.
Additionally, I was raised in a Caribbean family where expressing emotions or having meltdowns was not acceptable. For instance, I used to walk on my tippy-toes, and I was told that only sissies did that. This shows a completely different cultural perspective on autism, one that the white community might not share.
I grew up internalizing many of my sensitivities because I was afraid of being spanked or severely punished. Much of the parenting I experienced was driven by fear. We grappled with the fear of disappointing our parents and the daunting uncertainty of navigating a predominantly white world. We must also consider the intergenerational trauma that is passed from one generation to the next.
Within the Black community, we often react to triggers unconsciously, a result of the enduring impacts of trauma. When someone shows even mild signs of intellectual or developmental issues, they are often mocked, ignored, or pushed away by the community. The hypermask worn by Black people hides the traumas of white supremacy, highlighting the extra effort needed for progress. We adjust our behavior and use code-switching to make others comfortable, responding to the effects of racism in a post-colonial society.
While conducting my diagnosis, the doctor inquired about my childhood experiences and assessed my behaviors by referencing the severity levels outlined in the DSM-5. The levels are used to calculate an overall average for the diagnosis. The doctor observed my behaviors as typical of autism level one but failed to realize the extra effort I exerted to manage them, overlooking the added challenges of being judged more for my race than my diagnosis.
Women, POC’s, and LQBTQ+ communities often mask their true selves to fit into society due to marginalization. I observed that masking is frequently ignored and even misused against adults, making it harder for us to access essential resources. Masking our symptoms can prevent us from being recognized as level-2 or level-3 autism and even from receiving an official diagnosis. In my experience, my doctor overlooked the measurement of masking and its detrimental effects on my physical and mental health. He described level-1 as ‘suck it up’, suggesting that we should endure our sensitivities. This notion moved me to tears during the interview because, in reality, I struggle to cope with these symptoms. As I grow older, their impact on my life only intensifies.
Many in the autism community face similar challenges such as masking, burnout, and comorbid issues, yet non-marginalized groups often fail to grasp the concept of intersectionality and the diverse manifestations of autism. Dominant groups on platforms like TikTok and Instagram, now mostly white females (no longer white males), have shifted the public perception of autism, sometimes misrepresenting the broader community.
This issue has been very problematic within the autism community. Individuals with higher support needs, who are nonverbal and low masking, find their voices overshadowed. This happens because certain privileged individuals, who have access to resources and may even live in their mom’s basement, do not fully grasp the true hardships. They engage in reductionism, simplifying the impact of autism on people’s lives. Many of these individuals are self-diagnosed.
There has been significant criticism from autistic people with formal diagnoses and mothers caring for autistic children. They argue that these self-diagnosed individuals should not speak for the entire community, especially since they haven’t experienced some of the more severe challenges others face.
On the other hand, many argue that self-diagnosis is the only option for some, as it can be a matter of life and death. Without self-diagnosing, the lack of resources could lead to severe depression or even suicide. It’s often said that self-diagnosing autism can save lives, highlighting society’s failure to bridge the gap between autistic individuals and the resources needed to help them lead normal lives.
Another criticism of self-diagnosis is its inherent bias. Many people display symptoms of schizophrenia, ADHD, and personality disorders such as Cluster A, B, or C. However, due to the overlapping nature of these conditions, it’s challenging to accurately identify who actually has a specific disorder. For instance, while few might admit to narcissistic traits, many are likely to take an autism assessment.
Additionally, another point of criticism is that many behaviors might stem from complex post-traumatic stress disorder (CPTSD). Individuals might report experiencing autistic burnout or meltdowns when, in fact, they are dealing with dissociation. These symptoms often appear similar, but based on my analysis and opinion, it seems many are actually suffering from CPTSD. This is not to say they do not have autism, but it’s important to recognize that many symptoms they describe could be attributed to CPTSD, often resulting from late diagnosis or traumas experienced in childhood or the workplace.
I recall a doctor once shared with me that he supports self-diagnosis because it allows health professionals to initially address the trauma. After managing the trauma, they can then focus on any underlying conditions. However, it’s important to note that discussions about trauma are currently overshadowing the conversation about autism. At its core, autism is characterized by repetitive and restrictive behaviors along with social deficits.
Many individuals active in the social media space are not doing enough to bridge the gap between resources and autistic individuals. They are not contacting policymakers or clarifying which resources are available and which are not. Instead of self-advocating, they use their platforms to create content that relates to their experiences living with autism. This often includes discussions on comorbid issues like Alexithymia, pathological demand avoidance (PDA), and rejection-sensitive dysphoria, but rarely addresses how these issues negatively impact their lives.
What we’re observing is the use of the Forer effect, based on the Barnum effect. This is a psychological phenomenon where people accept vague and general personality descriptions as uniquely applicable to themselves. This trend is widening the divide between resources and autistic individuals, as more people self-diagnose with autism and promote a more social model of the condition, rather than seeking a formal diagnosis.
I understand there are barriers to obtaining a formal diagnosis. However, if these influencers used their platforms — which receive millions of views — to address these issues and raise funds, it could help everyone in the community obtain their formal diagnoses. This would significantly help close the resource gap.
Unfortunately, these individuals often use their platforms to portray autism almost as a means to avoid privilege and shirk the responsibility of advocating for those who are truly marginalized, when they have the majority of the market share.
One concerning trend I’ve noticed in the online space is the concept of aspie supremacy, which has roots in Nazi Germany. Many people in the community are framing autism not as a disability but as a gift or an evolution of mankind. They claim to be starseeds from another planet, suggesting that we are an evolved species. This implies that all autistic individuals are intellectually superior, despite autism being a developmental, not intellectual, disorder.
Research on Asperger’s syndrome and autism highlights complex social and cultural dynamics. Some individuals previously diagnosed with Asperger’s — a term now rejected due to its historical associations — adopt the ‘aspie’ supremacy ideology. They consider themselves superior to both neurotypical and other autistic individuals, often aligned with notions of whiteness, and economic value.
‘Aspie’ supremacy is highly problematic due to its eugenics undertone. It assumes that a specific race of humans is superior to all others. If this were the case, parents and individuals with autism might consider gene editing or selective breeding in an attempt to eliminate autism, seeking a cure for a condition that may never truly be cured.
It seems that social media companies, specifically Instagram and TikTok, are contributing to ‘aspie’ supremacy. They do this by promoting content from highly dependent autistic, which can sometimes infantilize autism rather than raise proper awareness about its diverse manifestations. On the other hand, these platforms’ algorithms favor individuals with level one autism who appear normal and meet the conventional standards of neurotypicality.
These individuals are often portrayed as white, female, and attractive. They feature engaging backdrops displaying their special interests, and they might be seen cosplaying, discussing their hobbies, or even styling their hair on camera. This portrayal appeals to many because it aligns with internalized ableism, where people prefer to identify with an attractive representation of autistic individuals.
These favored groups, amplified by social media algorithms, often do not recognize their privilege. They may not understand their responsibility to represent the broader autism community effectively. This is crucial because many in the community, whose symptoms are more pronounced, will never achieve the same level of outreach on their own.
I started noticing this issue in October last year when I became unhoused. Despite creating content daily and garnering millions of views, many people overlooked my repeated statements about feeling unsafe every day. I couldn’t understand why there was little response to my homelessness or efforts to help others in similar situations. This lack of support was evident in our community, where many share my struggles but receive little backing.
Whenever I asked for donations through my GoFundMe or encouraged visits to my monetized Facebook and YouTube channels, most people ignored me. This was frustrating, especially as a single father with a 15-year-old, facing dramatic life changes after a diagnosis. It felt like my voice was being silenced, and as an autistic content creator, while I was told I enriched others’ lives, I was the one needing support.
Despite the solidarity needed in our community to advocate for inaccessible resources, my efforts to raise awareness, including going on a content strike, were met with resistance. People criticized my tone, unfollowed, and censored me, sending messages that autistic individuals shouldn’t have to support me and suggesting I simply get a job. This was disheartening as I was dealing with over a year of burnout and dissociation.
I had hoped the autism community would support me, but instead, I gained followers who learned from me without using their platforms for advocacy. Self-advocacy is crucial in raising awareness about autism, which varies greatly among individuals. Yet, many believe change is impossible, criticizing me for using AI images or certain songs in my advocacy efforts, not understanding the challenge against the status quo I was attempting.
I also noticed hypocrisy in advocacy, where some would promote causes like Palestine but ignore my GoFundMe or others in similar situations. Additionally, self-advocacy seemed more prevalent among content creators of color; I rarely saw white creators doing the same. This led me to realize that many who claim to be marginalized aren’t significantly affected.
Currently, I’m staying in someone else’s home with uncertain tenure, which is frightening. Suggestions that Buddhism could cure my autism are misguided. Observing other social justice movements, I see potential for significant change if popular content creators choose to address the real issues holding us back. Many people, especially mothers and those severely struggling, could benefit from their influence.
However, there’s a lack of responsibility among these influencers, making it particularly unsafe for POC’s to rely on self-diagnosis, as it requires validation from others. When we discuss racism or unique experiences of POC’s, these influencers often unfollow or censor us, ignoring our reality. It’s almost we don’t have autism at all because a lot of these folks don’t idenitfy the unique cultural experiences.
Reflecting on the video, where that woman was running from the cops, it was promoting a view of autism that ignores the dangers POC’s face, including police brutality — a reality I and my friends have personally experienced — it’s clear that many white content creators are tone-deaf to how autism impacts people of color differently.
Before I started the assessment process, I shifted from identifying as a self-diagnosed autistic to an autistic pending diagnosis. This change was partly to challenge the community and to encourage POC’s to seek a formal diagnosis, even if it means saving for a lifetime to afford it. I wanted to highlight that this community is not entirely safe for us until content creators recognize and genuinely accept how autism manifests in people of color and how we unmask.
It’s crucial to push for a formal diagnosis. This is because when you share that you’re pursuing a diagnosis, people tend to offer more support. I’ve experienced this increased support myself. Initially, I didn’t feel the need for a formal diagnosis. However, my interactions within this community have shown me the importance of having official validation. All it takes is a paper, not a consensus of ‘white’ people.
If someone chooses to unfollow me because my expression doesn’t align with their cultural perspectives and standards, I’m left vulnerable without any protection. As a POC, who articulates well, my autism might not be recognized or validated by others. Having a formal diagnosis provides a level of protection and peace of mind that peer-to-peer diagnosis doesn’t offer. In this community, where many hold strong justice-oriented beliefs, lacking a formal diagnosis means I could be dismissed or canceled at any moment if I don’t align with their values.
Many individuals who are Black are disproportionately targeted due to their cognitive abilities and frequently face severe consequences, such as imprisonment or fatal encounters with law enforcement. These critical issues are often overlooked within the autism community. It’s important to recognize that Black people do not have the same freedoms when it comes to expressing distress, such as having meltdowns or other intense reactions.
I’ve been ostracized by my family and friends. I’m very much alone and lack protection. I’ve had to find creative ways to overcome burnout. Thankfully, I received some free therapy sessions that helped me manage dissociation. I’m trying to recover from this situation while dealing with mountains of debt. It feels like I’ll never get out of this because no one truly understands my situation. That’s why I’ve been pushing to get a formal diagnosis. However, I’m struggling with my assessor who fails to recognize that my ability to mask is not a trait of autism but something that is harming me.
When I discuss these issues, members of the white community and the autism community often tell me that I matter, my voice matters, and my diagnosis is valid. However, they don’t realize the extent of their privilege in being able to validate me. If they have the power to validate, they also have the power to revoke it.
Unfortunately, I cannot afford to lose that validation. When I began my movement and started gaining followers, having validation boosted my confidence. It helped me navigate difficult situations. But as I began to lose followers due to my expressions, I felt compelled to mask my true self. Without validation and awareness, I risk facing unsafe situations.
Whenever I raise these concerns, some people feel targeted or blamed. But my intention is to call for a change in the discourse. We have spent many years discussing autism on various platforms. It’s time to focus on closing the gaps rather than widening them and maintaining the status quo. We need both a social and a medical model of autism. People are struggling, and not everyone has access to the same resources or acceptance. Self-diagnosis is only valid in inclusive environments. Outside these environments, convincing others to provide necessary accommodations can be challenging, and it often doesn’t work out as hoped.
Self-diagnosis is a starting point for managing symptoms and seeking resources, aiming for a formal diagnosis. It involves learning about oneself through assessments and research, but it’s crucial not to stop there. Moving forward, measuring other conditions, and self-advocating are essential to signal to the medical industry the need for better resources.
Content creators, especially those with large followings, must responsibly represent their communities. They should help challenge platforms to prevent misinformation and ensure fair algorithmic representation. Social media is a vital tool for self-advocacy, offering insights into personal experiences with conditions like autism, which is often misunderstood as merely an intellectual disability. Otherwise, it’s unsafe to self-diagnose, at least in online spaces.
If all people cannot be accepted without prejudice — then self-diagnosis isn’t valid. If people cannot get help with these respective online communities — self-diagnosis isn’t valid. It's important to acknowledge that autism can have a significant impact on an individual’s life. If your symptoms are worsening rather than improving, seeking a formal diagnosis is a prudent step forward.
If this option doesn't align with the desires of the community, we must reevaluate our approach to content creation in this area.
