The Investigation of Psychiatric Disorders masking an Autism Diagnosis
Introduction
Hello, my name is Caroline Munn and I am graduating senior majoring in Urban and American Studies at Trinity College which is located in Hartford, Connecticut. During the Spring of 2021, I am enrolled in a class titled Autistic Blackness, where for my final digital project I have constructed a digital exhibit which includes Instagram Posts, TikToks, and Canva Infographics which display black women who were originally diagnosed with a psychiatric condition which eventually led to an Autism diagnosis.
In this class, we focus on how Autism and blackness can be read alongside each other likewise put into conversation. By putting these identities into conversation, the space is created for more diversities in our communities and world.
My intention for this project is to ground my research of Late Autism Diagnoses in social media posts such as Instagram and TikTok as well as scholarly sources to demonstrate how social media is a platform and space certain communities and identities to reflect, educate, and advocate. The purpose of this project is to show how late autism diagnoses are being discussed in these social media channels, however, are not being researched in a scholarly setting. Throughout my research on social media, I have concluded that there is little posting about late Autism diagnoses especially from black creators. I was not able to find any black creators when searching #lateautismdiagnosis or #blackwomanlateautismdiagnosis. However, I was able to find creators on TikTok while searching #blackwomanlateautismdiagnosis. The reasoning behind choosing the following three posts is because the posts directly or indirectly discuss the creators experience(s) with a late-autism diagnosis. Furthermore, as I am focusing on late diagnoses in black women and needed to find a creator that was female identifying.
My approach to autistic blackness is to continue my previous research of late Autism diagnoses and examine how mental disorders can mask an inevitable Autism diagnosis later in life. My thought process behind the research began about a month ago when we were in class discussing the disparities of autism diagnoses in female-identifying children and how they were diagnosed considerably later than their male-identifying counterparts. Moreover, I created a digital exhibit that is linked here and examines the connection between Spectrum (the leading resource for Autism research) and a social media post to demonstrate the effect of sharing content with multiple audiences.
Following, I began in the databases by typing in “late autism diagnoses” first and then later “how mental disorders mask eventual autism diagnosis”. I decided to ground my research in supplemental materials discussing psychiatric comorbidities such as Asperger Syndrome and High Functioning Autism and how several psychiatric conditions have been documented in comorbidity with Autism. I chose to condense the research studies into infographics to demonstrate the most important information. In addition to writing descriptions of each of the elements included in my exhibit. Keeping in mind that my audience is the members of the black autist community in addition to those seeking a community, I want to make sure that my exhibit is clear and understandable for all. Furthermore, I hope that at the conclusion, the reader is able to fit my exhibit into the larger context of Black Autism and disability studies.
Methods that I have used to make this digital exhibit accessible include large fonts, a low-contrast neutral color palette option to accommodate sensitive vision, and descriptions. I have provided text explanations for visual, video, links throughout my page. In addition, I have included a consistent navigation of a constant scroll for increased ease in operation. Other designs I have incorporated include, the use of simple sentences, bullets, links to further research, and writing in plain English. No one should be excluded because of their disability and with this in mind, and I have created this page with the commitment to accessibility for all people.
On the digital exhibit, I wanted to communicate that I am creating this project highlighting the Autistic community as a neurotypical person. I understand my analysis of this work could be different than others. Please contact if a user encounters any problems.
Next, I will transition to the Social Media posts that have grounded this exhibit.
“Being overlooked”
“also women and ESPECIALLY black women are overlooked and not believed.”
caption from @audraathome0’s TikTok
This TikTok published by @audraathome0 brings up the conversation of being overlooked and not believed for having Autism. The creator identifies as an ADHD, pan person on her profile. Audra shares to their community that if you are a black female and need self-validation for diagnoses of ADHD and Autism, she will share her personal experience. Early on in life, Audra began to notice that things were not “normal” which prompted her to begin the process of an evaluation for ADHD. The evaluator alluded that she might have Autism but she said she was perfectly normal. After this evaluation, she went on with her daily life. Now, as she is going on 41 years old and this was posted on 4/22/21, she understands that her experiences are not just another “personality quirk”. She has self-diagnosed herself as Autistic and now can understand herself fully.
About @audraathome0
The bubble above brings the observer to @audraathome0’s TikTok profile.
“My Autistic Story”
The TikTok published by @austicallykofi introduces herself and discusses her Autism story. Kofi is an Autistic pansexual black woman who lives in the south and has shared when she was diagnosed and the statistics of late diagnoses for different communities and identities. Kofi was diagnosed at the age of 21 and is currently 21. The creator explains that many women live years without being diagnosed with Autism, and are not diagnosed until their adulthood. This is because they are not believed, are misdiagnosed, or people think women cannot have Autism. As many go undiagnosed for these reasons, even more women of color are misdiagnosed or are diagnosed late while also dealing with racism and sexism. Kofi first sought her diagnosis after much research that was written by autistic people, which she explains is extremely important. Koi shares on the screen:
“Do TONS of research on your own if you suspect you are autistic”
Lastly, she describes that she was diagnosed because she found a female psychiatrist who believed them. The usage of believed demonstrates that there are other woman-identifying humans that are not believed, and are not diagnosed. The stylistic choices of this post include a Girl power tee-shirt, the inclusion of words on the screen to describe what they are saying, and the usage of hashtags. Wearing the girl power tee-shirt might have a coincidence that she wore it in this video, however, the shirt speaks to the topics she is discussing. Kofi is sharing her story to empower more women to advocate for their needs. By including the words on the screen, Kofi is appealing to a community that is hard of hearing, deaf, and every other community. The hashtags in her caption demonstrate the communities that she is trying to appeal to.
About @Austicallykofi
By clicking above you can learn more from @Austicallykofi’s TikTok page.
“Neurodivergent Lives Matter”
On April 23, @diahalyah16’s shared a TikTok where she indirectly discusses the concept of late diagnoses of ADHD. At the top of the TikTok is a post which was created by the coffeebee which talks about how for many years as well as present-day, many people went/go undiagnosed with Autism and ADHD. They continue to discuss how this group was not helped and was forced to suffer through life because they were not supported because they did not have a diagnosis. Lastly, the post stated “… but sure Janice, pretend my generation invented Autism” which demonstrates how this is not discussed enough and is only discussed now. While this creator does not have an ASD diagnosis, they are discussing this topic and the late diagnosis connection of ADHD and Autism.
Behind this post, the creator is pictured with both a filter and stars surrounding her face. They look up at the post for a few seconds in admiration, then they look into the camera lens and the words “*Like, comment and follow if you agree*” appear. This post speaks louder than words because the creator is using words on the screen as well as her facial expressions to demonstrate that they agree and are prompting others to share their thoughts too. In the comment section, people share:
Comments from @diahalyah16’s TikTok
“I’m sure that that’s true! I’m too old for those diagnoses, but I wonder…
“Trying”
“very true. My brother and my cousin grew up in a house of undiagnosed adults…we’re far more well-adapted than we have any right to be”
Each of these comments demonstrates how people understand the post, are working to get a diagnosis, or are agreeing but are not knowledgeable of the subject. From left to right, the first quote discussed how they agree but believe that they think they are too old for a diagnosis. The point of this TikTok video is to demonstrate that you can be any age and be diagnosed with Autism. People have been diagnosed into their forties due to the lack of research on late diagnoses in addition to persons of color. The middle quote, “Trying” shows that the person is working for a diagnosis or working to educate others about this. Lastly, the third quote agrees with the creator by sharing that their family grew up in a household with undiagnosed adults which seems like they have been diagnosed since and because of that are more well-adapted than they should have been. Each of these comments demonstrates that the prompt on the screen for comments was successful. In addition, this video demonstrates that you do not need to actually “speak” in the video for people to “respond”. @diahalyah16 uses no words, just facial expressions, and words on the screen to prompt viewers to act about this thought-provoking post.
About @diahalyah16:
Instagram Post from a White creator- @autisticselves
“My Diagnosis Journey”
In the Instagram post published on April 28, 2021, @autisticselves displayed, “My Diagnosis Journey” which is pictured above and shows their diagnosis journey from her teen years to 44 years old. In the post, the author demonstrates when they were first diagnosed with many different mental disorders and the time period in which they occurred. @autisticselves was first diagnosed with anorexia, anxiety, depression, and chronic fatigue in their teen years and then subsequently in their twenties was identified as having Dissociative Identity Disorder.
- Anorexia Nervosa: an eating disorder which is characterized by weight loss (or lack of appropriate weight gain in growing children) in addition to difficulties maintaining an appropriate body weight for your height, age, and stature; many individuals experience distorted body image, restriction of the number of calories and the types of foods that they eat.
- Anxiety: is an emotion characterized by feelings of tension, worried thoughts, and physical changes such as increased blood pressure. People with anxiety tend to have recurring intrusive thoughts or concerns
- Depression: is a mood disorder that causes the persistent feeling of sadness and loss of interest. Also called a major depressive disorder or clinical depression, it affects how you feel, think, as well as behave which can lead to a variety of emotional and physical problems.
- Chronic Fatigue Syndrome: is a complicated disorder that is characterized by extreme fatigue which lasts for at least six months and cannot be entirely explained by an underlying medical condition. This fatigue worsens with physical or mental activity likewise does not improve with rest.
- Dissociative Identity Disorders: (DID) formally known as multiple personality disorder, this order is characterized by alternating between multiple identities. A person may feel like one or more voices are trying to take control in their head. These identities may have unique names, characteristics, mannerisms, or even voices
After sharing that the creator was diagnosed with DID, ten years passed, and alters began to appear in their 30’s. An alter is a different identity that is thought to be typical for people with dissociative identity disorder (Merckelbach et al.). Studies have been conducted which demonstrate that DID patients with alters differ in-memory performance and their psychological profile. Others believe that alters are more than just metaphors (ibid). More than ten years later, @autisticselves was diagnosed with Autism and at the moment there were no alters present. However, their alters re-emerged a year later, and at that point, they had an Autism and DID diagnosis. To complete their diagnosis journey, the creator was reassessed to find out if they had DID or Autism or both. The reassessment proved that they have both DID and Autism and do not have Anorexia, Anxiety, Depression, or Chronic Fatigue that was diagnosed multiple years before. The diagnosis journey demonstrates how comorbidities of anorexia, anxiety, depression, and chronic fatigue that were present at the beginning of her life led to her ultimate diagnosis of DID and Autism. As stated in the caption of this photo, the creator is happy to have an accurate and full diagnosis because they are able to receive therapies and supports. This post illuminates the vast time period which ultimately proved a diagnosis of Autism and DID. According to the post, it took 45 years to receive a full diagnosis and they plan to use their platform to raise awareness for their diagnosis.
About @autisticselves
To learn more about @autisticselves click above.
Analysis
The Experiences of Late- diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype
- people with ASC (Autism Spectrum Conditions) are at risk for a range of emotional, behavioral, social, occupational, and emotional difficulties
"The timely identification of ASC (Autism Spectrum conditions) can mitigate some of these risks and improve quality of life, for example by identifying needs and appropriate interventions, increasing access to services, making others less judgemental of the person with ASC and their parents, reducing self-criticism, and helping to foster a positive sense of identity" (Bargiela et al.).
- people with ASC (Autism Spectrum Conditions) are at risk for a range of emotional, behavioral, social, occupational, and emotional difficulties
- compared to males…
- females are at a considerably higher risk of going undiagnosed with ASC
- being mislabeled or missed entirely
- females require more severe autistic symptoms as well as greater cognitive and behavioral problems to meet ASC criteria
- it has been proven that teachers underreport autistic traits in their female pupils
- females are at a considerably higher risk of going undiagnosed with ASC
“Such cultural stereotypes make it particularly dangerous to be ‘autistic while black.’ Part of the reason people are quick to stereotype me is that there is no research on middle-aged black women with autism.”
Catina Burkett: ‘Autistic while black’: How autism amplifies stereotypes”
Studies have recently been conducted about late diagnoses in adults as increasingly adults over the age of 50 are receiving a diagnosis of Autism Spectrum Condition (ASC). A report was published in 2019 discusses how it was the first report to investigate this specific population (Stagg and Belcher). They investigated and interviewed nine adults over the age of 50 who were recently diagnosed with ASC to conduct a thematic analysis. Results proved that participants received treatment for anxiety and depression. Furthermore, all participants reported ASC behaviors in their childhood while feeling like they were isolated or an alien (ibid). When they received the ASC diagnosis it was revolutionary because they were able to receive supports.
In 2019, a short report titled, “Delayed autism spectrum disorder recognition in children and adolescents previously diagnosed with attention-deficit/hyperactivity disorder” was published discussing the differences in the age of autism spectrum disorder diagnosis between participants with previously diagnosed ADHD disorder versus ASD-only respondents (Kentrou et al.). The researchers argue that the overlapping symptoms between ASH and ADHD might delay a formal diagnosis of Autism by leading to a misdiagnosis of ADHD and or making it difficult to identify the presence of ASD once ADHD has been diagnosed already (ibid). The researchers share that there needs to be a multidimensional and multidisciplinary screening procedure in order to get a full assessment for ASD in children and adolescents diagnosing who already have ADHD symptoms (ibid).
Children and adolescents, but not adults, who had previously received an ADHD diagnosis were diagnosed with autism on average 1.8 years later than children without a pre-existing ADHD diagnosis”
(Kentrou et al.)
The quote and statistic that is displayed above and below demonstrate how prevalent diagnoses of another mental condition before a ASD diagnosis. Children are being diagnosed with ASD later because they were misdiagnosed as having ADHD prior to their eventual diagnosis. In addition for the adult participants category, they reported that they had ADHD diagnosis prior to ASD diagnosis.
These sources and posts illuminate the notion of the late diagnosis in addition to the idea that women can be diagnosed with Autism as well. The sources that were shared describe late diagnoses and previous diagnosed mental conditions before an eventual diagnosis, however, they do not examine persons of color. There is not enough research about black women with Autism and how common late diagnoses are for this population. The female phenotype raises questions that relate to the gender biases of Autism. In addition, the scholarly sources demonstrate the need for a more comprehensive understanding of Autism and the communities that are diagnosed with it.
The inclusion of the TikTok and the Instagram post was chosen to demonstrate how late diagnoses stories and discussions were appearing on social media. At the conclusion of my research, I could not find any Instagram posts that discuss late diagnoses and preexisting medical conditions on Instagram that were created by persons of color. I was able to find just three TikTok videos that relate to this topic, which I have included. The lack of discussions on late diagnoses by black women creators reveals the greater discussions that women are misdiagnosed, are overlooked, and are believed to not have Autism because of gender stereotypes.
Further Resources
To learn more about “masking or camouflaging click the link of a video above
Research Studies
- Looking good but feeling bad: “Camouflaging” behaviors and mental health in women with autistic traits
- The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype
- Quantifying and exploring camouflaging in men and women with autism
- “Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions
In the Ted X talk titled, “Women and Autism Towards a Better Understanding” Sarai Pahla reveals the stereotype that Autism is not just a male disorder, women suffer from it also. Sarai is a young woman who grew up in Zimbabwe, South Africa, and has been living in Germany. In the Ted Talk, she discusses the difficulties of living with Asperger’s Syndrome (a high-functioning form of Autism).
The article, ‘Autistic while black’ How Autism amplifies stereotypes by Catina Burkett highlights how neurotypical people stereotype neurodivergent people and reveals how there is no literature published about Autistic black persons. The author is publishing this article to highlight the inequities of the lack of research about this topic as a black middle-aged woman who was recently diagnosed with Autism.
Works Cited
American Psychological Association. “Anxiety.” Https://Www.Apa.Org, https://www.apa.org/topics/anxiety. Accessed 11 May 2021.
American Speech-Language-Hearing Association. “Auditory Processing Disorders (APD) in Children.” American Speech-Language-Hearing Association, American Speech-Language-Hearing Association, /public/hearing/understanding-auditory-processing-disorders-in-children/. Accessed 11 May 2021.
Bargiela, Sarah, et al. “The Experiences of Late-Diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype.” Journal of Autism and Developmental Disorders, vol. 46, no. 10, Oct. 2016, pp. 3281–94. DOI.org (Crossref), doi:10.1007/s10803-016-2872-8.
Kentrou, Vasiliki, et al. “Delayed Autism Spectrum Disorder Recognition in Children and Adolescents Previously Diagnosed with Attention-Deficit/Hyperactivity Disorder.” Autism, vol. 23, no. 4, May 2019, pp. 1065–72. DOI.org (Crossref), doi:10.1177/1362361318785171.
Mayo Clinic. “Chronic Fatigue Syndrome – Symptoms and Causes.” Mayo Clinic, https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490. Accessed 11 May 2021.
Merckelbach, Harald, et al. “Alters in Dissociative Identity Disorder Metaphors or Genuine Entities?” Clinical Psychology Review, 2002, https://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.659.8903&rep=rep1&type=pdf.
National Alliance on Mental Illness. Dissociative Disorders | NAMI: National Alliance on Mental Illness. https://www.nami.org/About-Mental-Illness/Mental-Health-Conditions/Dissociative-Disorders. Accessed 11 May 2021.
National Eating Disorder Association. “Anorexia Nervosa.” National Eating Disorders Association, 25 Feb. 2017, https://www.nationaleatingdisorders.org/learn/by-eating-disorder/anorexia.
Stagg, Steven D., and Hannah Belcher. “Living with Autism without Knowing: Receiving a Diagnosis in Later Life.” Health Psychology and Behavioral Medicine, vol. 7, no. 1, Jan. 2019, pp. 348–61. DOI.org (Crossref), doi:10.1080/21642850.2019.1684920.
