The Lost Generation
Undiagnosed, Misdiagnosed, and Having a Missed Diagnosis
Many of us late-diagnosed autistic ADHDers are part of a group called, “The Lost Generation.” According to a 2020 study, the lost generation is,
“A population segment of autistic adults [who] are under-identified due, in part, to historic changes in criteria for diagnosing autism and diagnostic biases related to gender, socioeconomic status, and other individual characteristics such as intellectual functioning.1”
In fact, many individuals may go undiagnosed or also be misdiagnosed with other conditions prior to receiving an autism diagnosis. Authors of a second 2020 study entitled, “Missed diagnoses and misdiagnoses of adults with autism spectrum disorder,” write:
“Adults on the autism spectrum may remain unrecognized for different reasons. First, they may have never referred to child or adult psychiatric services (i.e., missed diagnoses). Second, they have been incorrectly diagnosed with other psychiatric disorders over the course of life; in fact, symptoms of ASD overlap with those of other psychopathological conditions, such as personality disorders, psychoses, anxiety disorders, obsessive–compulsive disorders (OCD), and intellectual disability (ID), thus making ASD less identifiable by clinicians who are not familiar with the condition (i.e., misdiagnoses). Third, the psychiatric disorder in question may be present in comorbidity with the autistic condition, thus partially covering ASD core symptoms (i.e., psychiatric comorbidity)...Original studies have reported that adults who were seeking a first ASD diagnosis had been frequently diagnosed with other psychiatric disorders, such as anxiety, attention deficit–hyperactivity disorder (ADHD), mood disorders, and personality disorders.2”
Unfortunately, all of this is compounded by the fact that the prevalence of co-occurring or comorbid conditions such as anxiety and depression “...are more common in people with ASD than the neurotypical population.3” That is, in many instances, neurodivergents may have multiple diagnoses. However, in other cases, they are simply misunderstood and misdiagnosed.
This can lead to people receiving inaccurate diagnoses and receiving improper medical care and support. For example, in an interview for The Insider, Bree Conklin shares that she was initially diagnosed with borderline personality disorder (BPD) at the age of 27 and was given medication for this condition. However, the medication did not help but instead created “frightening side effects.4” It wasn’t until five years later when a different doctor who was puzzled by Bree’s BPD diagnosis suggested that she be evaluated for autism.
“It took her two years of being on a waitlist to get a formal [autism] diagnosis. But Conklin described that time in between as life-changing. ‘For once in my life, I felt like being kind and compassionate to myself,’ she said. She even encouraged another friend who was diagnosed with BPD to seek out another opinion — and that friend learned that she actually had [an] autism and ADHD [diagnosis too].5”
Bias in Research
Part of the reason for both misdiagnosis and a missed diagnosis is the fact that the original research on autism is biased. For starters, did you know that the clinical research used to design the current medical diagnostic criteria for autism was conducted primarily on White, male children and does not truly represent the experiences of the wider autistic community?
In a 2022, Journal of the American Medical Association (JAMA), article, the author writes:
“Notably, the prototypical behavioral manifestations of ASD (on which existing diagnostic criteria and standardized diagnostic instruments are based) were derived from samples of children who were predominantly White and male, and, thus, systematic biases in the diagnostic tools used to evaluate individuals with suspected ASD could theoretically contribute to observed diagnostic disparities.”
Because awareness of healthcare disparities has been increasing over the last decade, more research studies are beginning to take into consideration the experiences of marginalized people who were previously excluded. For example, females may experience and express autism differently from males. This is one reason why they may have been historically underdiagnosed and misdiagnosed with other conditions.
According to a 2019 study entitled, “A Qualitative Exploration of the Female Experience of Autism Spectrum Disorder (ASD),” the authors write in their implications and future research directions:
“Future guidelines could include information for clinicians to aid understanding of barriers to diagnosis for females, such as the misconception that autism is a solely male diagnosis…Finally, for autistic females, having the opportunity to share their experiences and perspectives contribute towards viewing autism with a gender balanced lens, rather than the current male focus. It’s hoped that a greater understanding of female autism will allow autistic individuals to receive better recognition and understanding, and thus have a more positive experience.”
Personally, I’ve gained a lot of insights from female autistic advocates including YouTubers such as Taylor Heaton from Mom On The Spectrum, Olivia Hops from Wired Differently Autism + Females, Yo Samdy Sam, Charlie Rewilding, and others. Their stories, personal insights, and experiences have helped me to see autism through new eyes. In fact, even though I’m not a female, many of their experiences which go against the stereotypical view of autism including topics of empathy, being in relationships, and masking resonate very much with my own experiences. I am so grateful to each of these female autists for having the courage to share their stories.
Additionally, people from racially, ethnically, and socioeconomically diverse communities have historically been left out of autism research as well. In a 2021 published study entitled, “Biases, barriers, and possible solutions: Steps towards addressing autism researchers under-engagement with racially, ethnically, and socioeconomically diverse communities.” The study abstract states:
“Autistic individuals who are also people of color or from lower socioeconomic strata are historically underrepresented in research. Lack of representation in autism research has contributed to health and healthcare disparities. Reducing these disparities will require culturally competent research that is relevant to under-resourced communities as well as collecting large nationally representative samples, or samples in which traditionally disenfranchised groups are over-represented. To achieve these goals, a diverse group of culturally competent researchers must partner with and gain the trust of communities to identify and eliminate barriers to participating in research.”
For example, in a 2023 article entitled, “How Black autistic women and girls are excluded from conversations on resources and research,” the article tells the story of Bria Herbert who
“After 19 years of never feeling like she belonged, always wondering why — and blaming herself — absolution came in the form of an autism diagnosis. ‘It’s weird, but I felt … relieved,” Herbert said. “Getting the diagnosis was vindicating.6’”
The article goes on to share how the lack of inclusion of Black girls and women in autism research and autistic community dialogue contributes to alienation, and health outcome disparities, and ultimately contributes to limited community involvement leading to stigmatization and missed diagnoses.7
Finally, some studies have suggested that in comparison to the neurotypical population, those on the autism spectrum may be more likely to experience gender dysphoria or identify themselves as part of the LGBTQ+ community as well. However, the authors also note that “Members of the LGBTQ + community frequently experience notable barriers, discrimination and prejudice.” They also state that
“The majority of autism-related research has focused on children with much less attention paid to adults, particularly around issues of sexuality and gender diversity.”
So What?!
So, why am I pointing all of this out? Why is it important to know that there is a lack of research on autistic individuals who also identify as a female, a person of color, a person from a lower socioeconomic strata, or part of the LGBTQ+ community, or any other marginalized community? Here’s why. Without the inclusion of all these various autistic voices and experiences, we continue to marginalize groups of people and hold onto a narrower and more limited view of autism and the autistic community. This limited view does not take into consideration other people’s experiences and can lead to undue suffering, misdiagnosis, or having missed diagnoses. Additionally, this limited view contributes to the perpetuation of stereotypes and myths which can lead to further stigmatization of all autistic individuals.
Ironically, having a broader understanding of autism that includes everyone’s voice can not only benefit those who are marginalized but also assist those who come from more privileged backgrounds.
My Own Experience
While in college, in my early twenties, I was diagnosed with major depression and prescribed Prozac. Despite weekly counseling sessions and daily use of the antidepressant, I continued to experience high levels of anxiety, depression, and even suicidal ideations. The only response I received from my healthcare team was that the medication takes time to “kick in” and that I need to attend more frequent counseling sessions. At one point, I was scheduled for counseling twice a week.
Within counseling, my depression, anxiety, and social challenges were all easily explained away as a result of my being an adult child of an alcoholic (ACOA) and being a trauma survivor. That fact was used over and over again to explain the reason I was also having so many challenges. I was encouraged to attend ACOA and other twelve-step programs–-which I attempted, but found them to be very triggering and emotionally disregulating. To this, I was told that it just takes time and patience. And, I was encouraged to “fake it until I make it.” However, I ended up not attending any additional twelve-step meetings because I felt worse after the meeting than I did before attending. More specifically, it took me several days to recover from the aftermath of attending these meetings than it was worth for me. This isn’t to say that these groups aren’t helpful to others. They certainly can be. But, they weren’t for me.
In fact, despite all the talking, attending various groups and meetings, and taking the prescribed medication, I ultimately did not feel better. In fact, my symptoms persisted.
Today, as a healthcare provider myself, I believe the reason none of these tools worked well for me is that I was misdiagnosed and had a missed diagnosis of both autism and ADHD. Much of what I was experiencing and expressing as depression, anxiety, and social challenges had more to do with my neurodivergence, sensory processing challenges, and inherent communication differences than it did with any other mental health issue. That is, my nervous system was dysregulated on a daily basis and I did not have the proper language, tools, or resources to assist me.
After being on Prozac for over a year, I told my psychiatrist that I wanted to get off the medication. When asked why, I responded,
“I feel like I’m wearing a mask. I have a perma grin smile on the outside, but inside I don’t feel that anything has changed. I don’t like this feeling. It feels fake; I don’t feel like myself. I want to feel integrated and whole.”
Once I was weaned off the medication, I never took another antidepressant. Again, I have nothing against medication. Many people have positive benefits from their treatments when they have a correct diagnosis. Unfortunately, I didn’t. Again, the reason the medication didn’t work for me is because my signs and symptoms of depression were based on my undiagnosed neurodivergence, not as a result of major depression.
Over time, I did notice that in my experience better self-care including improved sleep hygiene, diet, nutrition, and exercise made a difference in how I felt physically, mentally, and emotionally. But, most importantly, a proper evaluation and diagnosis of both autism and ADHD made the biggest improvement for me.
Once properly diagnosed, I finally had answers to why my experience in life was so different and painful compared to others I knew. I also could finally understand why social communication, sensory issues, motivation, emotional dysregulation, and executive function tasks had been so challenging for me throughout my life. Knowing this gave me a starting point to find appropriate tools and other supports to assist me in my daily life and healing path.
Today, I recognize that twenty-five years ago there were few options for a more proper diagnosis because both autism and ADHD were not yet very well understood. In reality, we know much more about both neurotype presentations today than we’ve ever known; however, we still have a ways to go to change some old stereotypes and paradigms.
Where Do We Go From Here
In order to demystify outdated myths and stereotypes about autism, we need to hear and acknowledge different voices especially marginalized voices from the autistic community so we can expand our understanding of autism and the autistic experience. This will help those of us who are undiagnosed, misdiagnosed, or have a missed diagnosis to better see ourselves within the diverse and varied expressions along the autism spectrum. Then, for the first time, we can feel that we belong and are part of a like-minded community. Through this process, I believe we individually can better understand our own story and ourselves. This can help us uncover the truth of our neurotype and assist us in moving toward better self-understanding, self-acceptance, and self-love.
Endnotes
1. https://www.liebertpub.com/doi/10.1089/aut.2019.0069
2. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8866369/
3. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8866369/
4. https://www.insider.com/she-was-diagnosed-bpd-had-autism-2023-8
5. https://www.insider.com/she-was-diagnosed-bpd-had-autism-2023-8
6. https://19thnews.org/2023/06/black-women-and-girls-autism-data/
7. https://19thnews.org/2023/06/black-women-and-girls-autism-data/