By Melissa Lushington, "Don't Cut Corners...Unless It's Cake" - Blog Series Vol. 4, Slice #3
Photo Courtesy of Doodlepeople
Yesterday, I was on YouTube, and I came across an autistic YouTuber name Angelina whose YouTube channel name is known as Navigating the Spectrum. Angelina is 24 years old and intends on sharing her life experiences as an autistic adult, but what really got my attention as well as my interest in following her journey was Angelina coming out as a self-diagnosed autistic who is currently in the process of seeking a formal autism diagnosis. The reason why this got my attention is that this is the first time I came across an autistic YouTuber that came out as self-diagnosed and was sharing her life experiences as a clinically undiagnosed autistic individual. At that moment, I felt seen, represented, and most importantly of all…valid. Why does it matter that this moment made me feel valid? Because within the autism community, there are two categories that exist under the subject of diagnosis: those who are clinically diagnosed and those who are self-diagnosed. One of these categories has been very much criticized harshly by the public, and that category is self-diagnosed. In an article titled, The Dangers of Self-Diagnosis, Author and Chief Medical Officer Srini Pillay M.D. explains how self-diagnosis is dangerous and can lead a person down a wrong path when he states, “When you self-diagnose, you are essentially assuming that you know the subtleties that diagnosis constitutes. This can be very dangerous, as people who assume that they can surmise what is going on with themselves may miss the nuances of diagnosis. For example, people with mood swings often think that they have manic-depressive illness or bipolar disorder. However, mood swings are a symptom that can be a part of many different clinical scenarios: borderline personality disorder and major depression being two examples of other diagnoses.” He continues expressing his beliefs when he states, “One of the greatest dangers of self-diagnosis in psychological syndromes is that you may miss a medical disease that masquerades as a psychiatric syndrome. Thus, if you have panic disorder, you may miss the diagnosis of hyperthyroidism or an irregular heartbeat. Even more serious is the fact that some brain tumors may present with changes in personality or psychosis or even depression. If you assume you have depression and treat it with an over-the-counter preparation, you may completely miss a medical syndrome. Even if you do not want conventional treatment for depression, you may want conventional treatment for a brain tumor.”
In another article titled, TikTok and the Dangers of Self-Diagnosing Mental Health Disorders, Contributing Writer Regan Olsson explains the dramatic increase in teens and young adults self-diagnosing themselves as autistic, bipolar, and other neurological conditions and how at its best it does bring more awareness to people about autism, bipolar, and other neurological conditions, but at its worst, its created a load of misinformation that has led people to believe that they are something that they may not. He supports his belief when he states, “As we’ve seen during the pandemic, anyone can pose as whomever they want to on the internet. A Ph.D. posing as a medical doctor. A self-proclaimed health guru posing as a nutritionist. Whatever the case or situation, younger people are quick to believe what they see and hear on the internet without doing much questioning or further research.” Statements and beliefs are harmful to autistic people who are self-diagnosed because it makes them feel less valid, it makes them feel less likely to want to tell people that they are autistic because of how they got diagnosed, and sometimes it can make a person fall into a term known as imposter syndrome, which is a condition that can cause autistic people to doubt themselves as autistic individuals due to them not feeling like they are autistic enough. People can often feel like they’re not autistic enough due to their traits not being the same as everyone else, and there were times in the past wherein I felt like I wasn’t autistic enough due to me being self-diagnosed and my traits not being the same as everyone else. What helped me overcome my imposter syndrome, is being reminded that autism is not one-size-fits-all and that everyone’s autism is different. Autism is a neurological difference in the brain that is unique to you and only you, but it doesn’t make you less autistic or valid, it just means that you are the way you are in your own way.
Another thing that helped me overcome my imposter syndrome and feel validated as I am as a self-diagnosed individual was listening to other autistic individuals explain how self-diagnosis is valid and how helpful it was when it came to discovering themselves for who they truly are. These are some of those people:
Irene Chon: Irene Chon is a self-empowered coach, who uses her social media platforms such as Instagram (Self embark) and YouTube (The Thought Spot) to create a safe space for neurodivergent individuals like myself to feel understood and represented. Irene gives advice on how autistic people can embrace their autism and empower themselves with their neurodivergence. Her videos give raw authentic honesty about her life’s journey and openly share her experiences as a neurodivergent autistic woman with ADHD. The very first video that she made on her YouTube channel, was about self-diagnosis and how it saved her life. For starters, in her video, Irene doesn’t specifically use the term self-diagnosis because of the stigma behind it. Instead, she uses the term self-identifying because this is about being able to identify your condition or illness when medical professionals are not able to. Secondly, a large portion of the video is centered on Irene’s diagnosis journey to a medical illness known as Endometriosis. Irene explained that she had been struggling with endometriosis her whole life, but her symptoms started to really take a huge toll on her to the point where her pain was just unbearably bad and the chronic pain that she was dealing with on a regular basis would cause her to suffer so much that she became bedridden every day and is filled with so much pain. At one point, Irene ended up in the emergency room because the physical pain had become so overwhelming for her. A friend of Irene’s reached out to her at the time and mentioned endometriosis which was Irene’s first introduction to the condition. Irene described her emergency room experience as being traumatic and terrible, and after several hours she went home due to the lack of service that she was being given. At this point, Irene was in a desperate state of being wherein she couldn’t get help from doctors, and she was in desperate need of answers for what was wrong with her. So, Irene decided to do heavy investigative research on endometriosis. In an instant, all the information Irene read about endometriosis made sense to her, resonated with her, and she knew that this is what she truly had. Aside from reading articles on the internet, Irene watched countless Ted Talk videos, listened to many podcasts of women with endometriosis, and took heavy notes in her notebook on what her symptoms looked like and how they transformed throughout the years. She also kept a pain journal as well as another journal to keep track of her symptoms depending on what food she ate, and she was fully committed to understanding endometriosis and how it affects her personally. So, when Irene self-identified with endometriosis, she made it a goal to receive a clinical diagnosis and get treatment for it so that she wouldn’t have to suffer anymore. Then Irene started the process of making several doctors’ appointments and was sadly disappointed enough to see that every doctor and medical professional told her that everything she was going through was all in her head and that it was normal for her to have the symptoms she was having with her period, so just take Motrin while having her period as well as birth control pills. She even had a nurse practitioner laugh at her when she mentioned endometriosis. The nurse asked Irene why she thinks she has endometriosis, and that moment was traumatizing for Irene because she felt like she wasn’t being taken seriously and that the nurse was making her feel like she didn’t know what she was talking about. Then Irene made an appointment with her primary care doctor, in which she suddenly started crying in front of her due to the stress of her medical situation, which is something she normally doesn’t do. Thankfully, the doctor was empathetic enough to recommend Irene to a physician that would show up at the clinic once a week and would have Irene scheduled with that physician. This gave Irene a glimmer of hope. Afterward, Irene made a phone call to make sure that her appointment with the physician was still happening, and someone told Irene that she was scheduled to meet with a wet nurse. So, Irene corrected them and made sure that they knew that her appointment was scheduled with the physician that the previous doctor recommended to her. When Irene went in to see the physician, she told her about her symptoms. The physician immediately validated Irene and apologized on behalf of Irene’s experiences with the other medical professionals. She then told Irene that she will refer her to an endometriosis specialist. At first, the specialist didn’t reach out to Irene during the time that they were supposed to, so Irene called back the physician and told her about it. The physician said that she will contact the specialist again, and the specialist finally reached out to Irene after a month. Irene finally went in to see the specialist for endometriosis, and the specialist gave Irene a pelvic examination and she asked her questions about her symptoms. When the exam was over, the specialist told Irene that she has endometriosis and asked her when she wanted to schedule her surgery. Irene asked the specialist how did she know that she has endometriosis, and the specialist explained by saying that she’s been doing this for years and she’s seen countless women with this condition, so she knew for sure that she had it. The specialist then apologized to Irene for her bad experiences with medical professionals and explained that doctors have a history of failing women like Irene and they never get the chance to go to her office because of the ignorance and misinformation that doctors have on endometriosis because they don’t know enough and it’s disappointing. So the specialist told Irene all the treatments that she can give her and recommended that they can schedule the surgery for November 4th and call her in October to go over all the details. Irene then explains finally that this is the importance of self-diagnosis/self-identifying because if she didn’t do her deep research on endometriosis, then she wouldn’t even know that she had it and if it weren’t for her advocating herself repeatedly to doctors about what she had and needed, then she never would have made it to the specialist who gave her the surgery for it. I know that this was an anecdotal experience that talked about endometriosis and not autism, but please consider the struggle that Irene went through just to get a proper clinical diagnosis for endometriosis and imagine someone else going through the same struggle except this is for a clinical diagnosis for autism.
Pictured Autism Infinity Symbol created by neurodiversity advocates
The Outspoken Autistic: The Outspoken Autistic is a YouTube channel hosted by a neurodivergent autistic woman that was clinically diagnosed as autistic at 25 years old. One of the early videos that she made, was about gatekeeping in the autism community and whether self-diagnosing is valid, which she says it is. In her video, she talks about how self-diagnosis is often looked down upon in the autism community. After being diagnosed as autistic herself during the year that she made the video, she looked through the autism and Asperger’s subreddits that interact with people in the community. She discovered that a large majority of individuals believe that self-diagnosis is not valid and that they have problems with self-diagnosis. While she understood the sentiments behind the remarks, she still didn’t believe personally that this is the right way to address the larger issue at hand. The larger issue is that there are still many undiagnosed autistic individuals that are knowingly or unknowingly struggling in life without getting the tools that other diagnosed autistic people are privileged to have. She explains that saying someone isn’t valid as an autistic individual because they don’t have an official clinical diagnosis is just ignorant. She also explained how people who support the belief of self-diagnosis not being valid, are most likely the ones that have adequate access to healthcare, a good support system to support their disability, and great resources that allowed people to navigate through life and not get challenged on their thoughts or views of the world. She also explained that it could be a worse situation where someone went through the struggling process of a clinical diagnosis, and now want to be on their high horse by telling people that this is the way to go about an autism diagnosis. Well, just because someone else has it easier in getting an autism diagnosis and learning about themselves doesn’t mean that everyone else will have it just as easy. As the outspoken autistic explains how there are many people in life that still have hidden autism, and they don’t have any resources to help support them. Therefore, they were always forced to heavily mask themselves to make it through the world due to not having any other option. Since they mask so well, they, unfortunately, get bullied into disbelieving their own disabilities by diagnosed autistics by saying that they don’t look autistic or seem autistic, which is ironic since many autistic people were once heavily bullied before in their lives, so it’s baffling to know that some people are willing to make the same mistake.
Then the outspoken autistic talked about gatekeeping in her video, and how disturbing the system is when it comes to autistic people. She explains how she feels like when it comes to autistic people who have a formal clinical diagnosis of autism, they don’t want to accept that there are other forms of autism and that they haven’t experienced them yet. She also explains the six reasons why people believe that self-diagnosis is invalid. The first reason is that you can misdiagnose yourself, which is true, but then she explains how doctors can easily misdiagnose people too and that it’s happened to her once herself. The second reason is that it leads to misrepresentation, but the truth is that autism is already misrepresented. The outspoken autistic explains that the common perspective of how people view autism is that it applies to only white boys/men. They don’t consider the fact that autism can also apply to girls/women, they don’t consider the fact that autism can apply to people of color, they don’t consider the fact that autism presents differently in everyone, and therefore a large portion of autistic people are being left out. If you’re truly concerned about autism misrepresentation, then be sure to be open-minded about listening to autistic experiences that are different from yours. Stop having this unrealistic standard about what you think autism is, that does more to isolate autistic people instead of including them. The third reason is that self-diagnosis leads to exploitation, meaning that a person can use social media to pretend that they’re autistic or someone from the neurodivergent community to gain clickbait views. It’s sadly true that there are people online that pretend to be autistic, bipolar, or someone from the neurodivergent community just to obtain internet fame, but why should we associate con artists with self-diagnosed autistic people? According to the outspoken autistic, there are always going to be people who will lie about anything to obtain anything, but that doesn’t mean we should invalidate self-diagnosis. Also, even con artists could receive a clinical diagnosis if they wanted to, but would that mean that con artists are suddenly more valid than self-diagnosed autistic people who don’t have the option but to self-diagnose? Situations like this just create an excuse to invalidate the experiences of the overlooked, instead of giving them a voice to speak their truth. Those are the three reasons why people invalidate self-diagnosed autistic people, according to the outspoken autistic.
In conclusion in the outspoken autistic’s video, there are many things that are widely ignored and overlooked when it comes to autistic people, and that includes women and people of color. Whenever a person of color or a female shares their experiences publicly, it’s harshly criticized by those who say that seeking treatment is not hard and doctors know more than you do, when the reality is that people lose their lives due to misdiagnosis by a doctor, mistreatment, and invisibility. So, the moral of this video is that you can get misdiagnosed by a doctor, autism is already misrepresented due to people’s lack of knowledge about what autism really is, and people will always exploit anything for money, but that doesn’t make it right or fair to invalidate a person’s life experiences that resonate with what they believe to be their truth about themselves. If you’re not a doctor with a licensed degree and if you’re not living with someone who’s self-diagnosed autistic, then you have no right to invalidate or criticize anyone’s truth when you don’t know anything about anyone else’s life but yours.
Cassie Winter: The last person I would like to talk about is a woman who’s not autistic, but her name is Cassie Winter, she is a Productivity Expert and Life Coach for Spoonies as well as the Neurospicy Founder of Accountability Muse, and The Action Navigator. Cassie is known for helping neurodivergent spoonies that are tired of feeling like failures and a burden from doing things that neurotypical, able-bodied, and toxic way to master a toolset for genuine self-care and a bias toward action, so they could finally believe and trust themselves enough to spend their time and energy the way they choose to. One of her videos was about self-diagnosis and the six reasons why it is valid and important. The first reason she gives is that you’re the authority on your mind and body. She explains that one of the things that have been so difficult in her personal journey is being gaslit by adults, authority figures, and of course medical professionals that have dismissed her experiences that have happened inside her body. It was a traumatic experience when she was a child, and she wants people to be reminded that you are the only person that knows what’s going on in your body. She also explains how rare it is for someone to pretend to have what they don’t have or pretend to be what they’re not just for attention, but she would rather believe everybody and help people get the support they need, even if it means letting a few rare bad apples get the attention their craving for, than unnecessarily and unintentionally traumatizing and hurting people who genuinely need help and support for their condition. The second reason she gives is that a clinical diagnosis is often financially inaccessible. She explains that particularly for some of us in the United States, don’t have single-parent healthcare and insurance costs a lot of money. She also makes an important point that self-diagnosis is not hurting anyone or herself, rather it is helping her to better manage her neurodivergent experience with her self-diagnosis to care for herself. She even explains that if you can’t get an official diagnosis simply because you can’t afford it, that’s no reason to invalidate your self-diagnosis. The third reason she gives is that a clinical diagnosis is inaccessible systematically. She explains that the medical system is a nightmare to navigate on your own, and even if you have a great advocate or reliable source on your side, it’s still a nightmare to tolerate. She advises people to please be kind to themselves and she explains that she’s been through the process of getting a clinical diagnosis for a certain condition just so she can get it treated for over three years. She also talks about a diagnostic procedure that went wrong in February of 2019. She had the procedure redone three years later and was still suffering from her condition but was hoping to finally receive the official proof of needing surgical treatment. She also explains that the only reason why she was able to get as far as she did, was because of her determination to receive help for her condition, and navigating this process in the medical system was a nightmare experience for her. Therefore, getting a clinical diagnosis is often systematically inaccessible due to the medical insurance system. It’s a series of jumping through hoops in order to get the right referrals, tests, and everything else that comes with it. The fourth reason she gives is that seeking a diagnosis costs a lot of spoons (energy). Cassie explains that most of her time and energy trying to get help, and not receiving it either. She explains how she didn’t have any time or energy left to live her life, and she looks back on those moments as lost years she’ll never get back and grieves for them to this day. She allows herself to be dissociated from those thoughts because if she were to ever dwell on them emotionally, she would start crying heavily. The fifth reason she gives is that doctors don’t know everything. She explains that the human body and the human mind are very complex things, and the things that always worried Cassie was that people give this impression that they think they know everything they need to know about things when there is still so much more to know about the human body and mind that we have yet to discover. Doctors can know a lot about one thing, but they still won’t be able to know about everything else that’s going on. We’ve come a long way, but we still have miles left to go. She even advises people not to put their doctor on a pedal stool. You are the authority on your body, and it’s your right to challenge their assumptions and beliefs about your experience. The sixth and final reason she gives is that it helps you avoid medical trauma. Cassie explains that she has medical PTSD from her experiences with doctors, and the two aspects that she talked about in her video is when a procedure goes wrong is traumatic trauma for the physical body and gaslighting which is when a medical professional invalidates your lived experiences. They’ll say things to make you think that it’s all in your head and that you’re not in that much pain, and they’ll use your age as a factor to say that you might be too young to be experiencing these symptoms. Cassie says that it’s common for people with chronic pain to experience medical PTSD and it takes a lot for people to be willing to jump through the hoops that Cassie mentioned earlier at the beginning of her video. So, those are the six reasons why Cassie Winter believes that self-diagnosis is valid.
In conclusion, self-diagnosis is not a social media trend, neither is it something that happens after watching a video on TikTok. It’s a serious process that requires a lot of heavy researching, heavy reflecting on yourself and your past/current experiences, talking to those associated with you, and asking them to explain what you were like when you were younger as well as what you are currently like now, and even heavy digging through school documents that might list traits you have that are related to a certain condition. I’ve been a self-diagnosed autistic since 2017, and everything that I’ve mentioned above I’ve done for myself to confirm my self-diagnosis. Even as I continue to do research about autism for the blogs I write for the Verge of Independence Project, I learn new information that resonates with me and make me feel validated as I am a self-diagnosed autistic. Hopefully one day, I’ll receive an official clinical diagnosis for autism, but for now, I’m self-diagnosed and that makes me just as valid. Also, here are some links to videos about self-diagnosis that are made by the women featured in this blog. Thank you:
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