CW: Gaslighting, medical trauma
This Is Not My Story
I was lucky. This story isn’t about me. But it really could have been.
I found out I was autistic before ever being misdiagnosed with anything. One year before I found out I might be autistic, I thought I had social anxiety disorder, or generalized anxiety disorder. I considered going to a therapist due to how stressed out I was. It was my 2nd year of graduate school, and the change in environment had particularly exhausted me. However, I was too nervous to contact a therapist. I just didn’t think it was going to help anything.
I was lucky. In another life, I may have been only diagnosed with an anxiety disorder and put on medication (which may have helped short-term, but not long-term), or gone through cognitive behavioral therapy (which would not have helped my sensory sensitivities and hyperacusis that I didn’t know I had). I am so so glad I did not go, and I am so much less anxious now because I know how to accommodate my sensory needs. Although I still have anxiety (not officially diagnosed) in certain situations, it’s not nearly what it used to be. I had previously assumed I was an anxious neurotypical who just couldn’t do anything right. Turns out I was an anxious autistic person. But because I am a non-binary AFAB* person, and also mask heavily, I likely would not have been diagnosed as autistic if I didn’t find out for myself first.
Autistic Misdiagnosis – 228 Autistic Lives
This post is about the hundreds and thousands of autistic people who are misdiagnosed everyday by psychiatrists, psychologists, and other professionals. Just from a casual twitter poll alone over 5 days, 228 autistic people out of 295 responses said they were misdiagnosed, 77% of respondents. This post is for those autistic people. Their stories need to be heard. Medical professionals have an obligation to do no harm, yet many of them continue to harm autistic people. This needs to stop. Patients should be listened to, not gaslighted, and not forced into treatment they don’t want and don’t need in the first place.
Many autistic people were gracious enough to tell me about their experiences with being misdiagnosed and gaslighted by medical professionals. This post consists of 46 quotes from autistic people. If you can, please read them all. Please listen to autistic voices.
Playing the Diagnosis Lottery
From listening to a lot of other autistic people (some cis men, but especially autistic women and AFAB* people), misdiagnosis of borderline personality disorder, bipolar disorder, anxiety, and depression is quite common. Some autistic people have been misdiagnosed for decades, or were put on medications that didn’t help, or even made them worse (most commonly lithium or anti-depressants). Many autistic people do and can have other co-occurring conditions, but real harm can occur when therapists and psychologists don’t realize, or sometimes outwardly refute the idea that their client is autistic.
The Misdiagnosis List
- Bipolar disorder
- Obsessive compulsive disorder
- Borderline personality disorder (BPD)
- Narcissistic personality disorder
- Avoidant personality disorder
- Schizoid personality disorder
- Schizo Typal disorder
- Major depressive disorder
- Psychotic features
- Oppositional defiant disorder
- Cyclythemic disorder
- Attention deficit hyperactive disorder
- Generalized anxiety disorder
- Complex post-traumatic stress disorder
- Borderline Personality Disorder or Bipolar Disorder Misdiagnosis
“I was misdiagnosed with borderline personality disorder, bipolar I and bipolar II, major depressive disorder, clinical depression, ADHD, and mild OCD. I now have a diagnosis of Complex PTSD with Dissociative Disorder, but I see a lot of autism on both sides of my family, and my son is ASD. I’m 99.9% positive, if I sat down with someone that actually knew what they were doing, I would have an official diagnosis of ASD/Aspergers. Pretty sure my Dad was an Aspie.” – Anonymous
“I was diagnosed bipolar in my early 20s and that was changed to ASD at 43. I’m raising my non-verbal autistic grandson and he’s the reason I went for an ASD assessment. He was diagnosed at 33 months. I was diagnosed when he was about 7.” – Anonymous
“I was diagnosed bipolar at 15. Docs have thrown around more ASD and anxiety. I don’t have a formal ASD diagnosis. It’s more that my doctors (and my kid’s docs) are saying ‘yep, you probably are as well’” – Anonymous
“I’ve been diagnosed with BPD and three of my children are autistic, but I’ve sometimes wondered if I could be autistic. I have significant sensory sensitivities and ocd compulsion. I was also diagnosed GAD. Previous to BPD, they said bipolar type II” – Anonymous
“BPD at 30, autistic at 41” – Anonymous
“major depressive disorder, psychotic features; bipolar; schizotypal” – Anonymous
Some people have been actively harmed by medical professionals due to their misdiagnosis, particularly from a misdiagnosis of borderline personality disorder. (No one should be treated this way or gaslighted, regardless of what diagnosis one has, but a BPD diagnosis and a schizophrenia diagnosis seem to have a particular stigma within the medical field, and many autistic people find themselves harmed by this stigma. The stigma for people who are correctly diagnosed with borderline personality disorder and schizophrenia should also be fought against.)
“I was diagnosed BPD! They had me so drugged I couldn’t function for 15 years” – Anonymous
“I was diagnosed schizophrenic and heavily medicated for years before having that replaced with autism.” – Anonymous
“Misdiagnosed for nearly 30 years. I was so heavily medicated after the birth of each child, I have no actual memories of the first years of their lives. Diagnosed Asperger’s age 39. Changed to ASD age 41. Now I have only 2 meds for mental health. Reboxetine and Pregablin. The other meds actually made me mentally ill. When I wasn’t! I was Autistic!” – Anonymous
“I was given Lithium at 17 with a tentative bipolar diagnosis. It screwed me up, I got off it at 18 and didn’t go back to a psychiatrist until 31. Turns out I have some depression, lots of anxiety, and autism. I am very sensitive to rejection and was being abused.” – Anonymous
“Misdiagnosed with Bipolar and thrown on lithium” – Anonymous
“Diagnosed bipolar. I of course researched it and came back asking why I only fit some symptoms but fit ALL autism symptoms. She said it didn’t matter and pressured me to try all these medications. Made life awful, got a second opinion and was told I was right I’m not bipolar.” – Anonymous
“Although I was in a mental hospital as a child, I wasn’t diagnosed as autistic until my 60s. But I do also have severe depression.” – @simon_brooke
The BPD/Autism Overlap From Professionals
Another autistic person was diagnosed with ADHD and bipolar disorder, but not autism. One autistic person even has a potential ASD diagnosis from a psychologist and a potential BPD diagnosis from a psychiatrist at the same time:
“I have a psychiatrist who thinks I’m BPD and a psychologist who thinks I’m ASD and ADHD and OCD. It’s gonna be interesting trying to get an assessment referral” – Anonymous
Another autistic person’s current psychologist does not agree with their previous BPD diagnosis:
“Bpd as a teen.. I have an autism diagnosis but my psych says I don’t have bpd at all. I was BPD, PTSD, GAD, ADHD in my teens. Now I’m Autism OCD ADHD CPTSD” – Anonymous
Bipolar Disorder Misdiagnosis
“I’m 42 years old and only just realizing I’m autistic. I’ve been diagnosed with major depression and bipolar 2 (a definite misdiagnosis).” – Anonymous
“I was hospitalized because of major depression, left the hospital with bipolar diagnosis and prescriptions for 3 different meds to take. Had exactly one symptom that was supposed to be the manic state: bursts of energy that lasted a few hours and during which I acted unusually.” – Anonymous
“I was misdiagnosed as bipolar at 37, got my autism diagnosis at 50.” – Frank Ludwig
“I was diagnosed with bipolar and anxiety at 20 and autism at 22.” – Alexander Reeves
“Incorrectly diagnosed as a child as bipolar but correctly diagnosed with trichotillomania and OCD.” – Anonymous
“I’ve been diagnosed bipolar and I’ve been told by professionals that I probably have BPD..I believed I was bipolar for years, but over time I did more and more research. Particularly researching Autism and masking in women and girls, thinking back to all the things that didn’t quite make sense throughout childhood…I’m emotionally unstable for sure. And I can definitely see why people would assume I’m bipolar, even professionals. And BPD too…But in reality, I have been studying psychology for about 6 years now…I think I know myself better than anyone else, regardless of formal education. And yes, the symptoms are there, but I know the root causes are distinct. All the sensory stuff, low stress tolerance, problems with food, relationships, tendency for being over trusting, maybe even emotionally dependent, easily manipulated and frequently abused & bullied. I’m not diagnosed Autistic yet, but it’s part of the plan. I also hope to get the bipolar DX removed as it has prevented me from getting DX/treatment for ADHD in the past.” – Anonymous
Professional Misinterpretation of Autistics
The person quoted directly above perfectly illustrates the problem with diagnosing disorders based on external behavior. Misdiagnoses can be actively harmful, especially to autistic people whose body language and tone of voice may be misinterpreted by a neurotypical as a “problem” to be solved. For example, many autistic people have said they were misdiagnosed with depression when they actually have had autistic burnout. Not making eye contact, or talking with a different tone of voice, or having a flat affect may be assumed to represent sadness rather than genuine autistic body language.
Personally, most people who don’t know me assume I am either sad, angry, or tired most of the time, even when I’m happy. Many autistic people are on anti-depressants when they don’t need them, or when the anti-depressants have not helped them, as therapists sometimes assume they are depressed rather than autistic.
Many autistic people articulately explain how they were misinterpreted, and how they came to be misdiagnosed and came to a correct diagnosis on their own:
“I had a really inaccurate working dx..It wasn’t given to me formally but did inform the way they treated me. (I didn’t need to be on the med they gave me and had intense side effects). The inaccurate working dx was bipolar disorder type II. I remember it coming up after I was befuddled at a lot of their questions at around age 18. I probably gave confusing answers. I think a lot of my confusion arose from autism and how I was interpreting sensory stuff at the time. I have a slight, not direct, family history (of bipolar I). That was the primary reason for the working dx… but I always felt it was something else. I do have depression, as it happens (and later, PTSD)” – Anonymous
“If they’ve just met me (for ex. hospital docs) they zero in on self-harm and decide I have BPD, whereas pros that work with me longer (for ex. outpatient therapists) eventually realize I’m actually autistic” – homo qui vixit @endeverstar
“The psychiatrist suggested a working diagnosis of bipolar disorder admitting it didn’t 100% fit even. I’m not bipolar and the therapist even questioned them over it (was only a 30-45mins appt.).” – Anonymous
“Yes, bipolar II for 17 years. Diagnosis only effectively revoked once I’d worked out I’m autistic & got that diagnosed.” – Anonymous
“Long term depression is definite but masked autism for a long time. Generalized anxiety disorder diagnosed at 14, probably correct. Had BPD/bipolar thrown about a lot running up to diagnosis, and once or twice after.” – @geekinoverload
“I got depression, then anxiety, then I got assessed for bipolar disorder but diagnosed with borderline personality disorder. If the first two were not absolutely wrong, I was depressed and I’m still suffering from anxiety, the last one was a hell of a mistake… no wonder they missed the autism and the PTSD. I saw at least 12 different psychiatrists/psychologists /therapists over 24 years total. At 34, I finally have the answers I desperately needed.” – Anonymous
Depression or Anxiety Misdiagnosis
“Unfortunately I was misdiagnosed as just depression and anxiety for ten years first. I have literally tried every antidepressant that exists – because none of them have any effect on me! Because I am not depressed.” – Anonymous
“Depression diagnosed in my twenties. Bipolar in my thirties. Autism at age 46.” – Anonymous
“I was misdiagnosed with anxiety and depression. 15 years for me. They never bothered checking further so I didn’t get the BPD diagnosis either. Got my ASD diagnosis at 31.” – Anonymous
“Yes. BPD at 16, depression since 13, Cyclythemic disorder in my early 20s. Lots more that you’ve not mentioned. With my dx I’ve kept comorbid MDD, GAD and a couple other but the personality disorders are described as ‘no longer relevant’” – Anonymous
“I was misdiagnosed with anorexia, depression and anxiety disorder before I was correctly diagnosed as autistic” – Hanny M @Hannahmomi
“First referral to Psychiatry at age 11, prescribed anti anxiety meds. Next at 14, 17, 23, have managed a few wee breaks from it over the years though, diagnosed 34 years later.” – Anonymous
“I was misdiagnosed with depression (before I was actually depressed) in elementary school, my isolationist tendencies, anger, and self harmful stims were mistaken for depression after I yelled out something during a meltdown.” – Anonymous
“I was misdiagnosed with OCD at six years old. This was revoked when I was fourteen and changed to autism. OCD was what the psychologist believed at the time due to the compulsive, routine habits that existed as part of my autism.” – Anonymous
“I was initially misdiagnosed as OCD, and I can see where there are some features of that that overlap with my later diagnosis of Asperger’s Syndrome. #actuallyautistic” – TheAspieResistance @AspieGirl83
“While I wasn’t officially diagnosed with it, a therapist I was seeing was convinced that all my problems stemmed from anxiety and obsessive compulsive personality disorder. Later I was diagnosed with autism and adhd, which all actually makes sense.” – Anonymous
Schizoid Personality Disorder/Schizophrenia Misdiagnosis
“My therapist says that I am so intelligent and skilled at masking that I “slipped through the cracks” and was diagnosed as ADHD with anxiety. I was later misdiagnosed with Bipolar disorder, Schizoid personality disorder, Schizo Typal disorder.” – @Dyslexson
“Before my autism DX, at one point in my life or another, I had one or more: anxiety, depression, passive-aggressive personality disorder, narcissistic personality disorder, schizotypal personality disorder, avoidant personality disorder, ADHD, major depressive dis[order]” – Anonymous
“I was diagnosed schizophrenic (20 years ago) and bipolar. The former because I said people were always looking at me and I didn’t like it; the Dr assumed I was hallucinating and called me a ‘very sick little girl’. I was 24.” – @Andosia_Fair
It’s Still Happening
Unfortunately, even while I was in the middle of writing this blog post, another autistic person experienced a blatantly obvious misdiagnosis when trying to get an autism assessment. Misdiagnoses for autistic people are still happening, especially in the US. Autistic people, most often autistic women, AFAB people, and BIPOC people, are not being listened to or believed about their own experiences.
“I am SO upset right now. Just walked out of my appt with a new psychiatrist… right away he said ‘I know I’ve seen you for less than 5 min but I can guarantee you’re not autistic.’ then after going off this huge list of traits I wrote down..he told me I have a lot of autistic traits but that’s just my personality. Then he said he’s going to diagnose me with anxiety, adhd and bipolar (I’ve looked into bipolar and that’s definitely not me). I told him most women who masked are diagnosed with those before finding someone schooled in adult female autism and he started reprimanding me that I’m lying and full of lies…I can’t stop crying and want to totally meltdown now.” – Anonymous
Two other autistic people had a similar experience to this person after receiving a referral for an autism diagnosis. Even when coming in armed with knowledge of autism in AFAB people, some professionals still do not listen to their clients about their own experiences and refuse to understand how biased autism assessments are currently, as the assessment was created only from autistic cis white boys. Autistic people are not stereotypes. You cannot decide whether someone is autistic within 5 minutes of meeting them, especially if you’re supposed to be evaluating them for said diagnosis.
Because of professionals like these, many people have to wait decades to either find out they are autistic themselves through books or social media, or try their luck at the professional lottery.
Privilege as Diagnosis
Do you know how long it takes to find a psychologist or therapist who works with autistic adults? What about autistic AFAB adults? It took me six months of looking (and a call from my mother, because they didn’t understand my phone call apparently) to find someone who worked with autistic AFAB adults and women, and they were in my parents’ state which I had to fly to. Not many people have the privilege, time, or resources to do that. And if I were any more diverse than an AFAB person who is often publicly perceived as a cishet white woman? Then good luck. I have no idea if that person had diagnosed autistic women of color before, or autistic openly trans people. I was whole-heartedly only diagnosed as autistic because of my white/class privilege. And a correct diagnosis should not be limited by anyone’s identity, even though it currently is.
The “You Can’t Be Autistic” Diagnosis
“I was told I have significant traits of both autism and adhd but she said as neither one was “over arching” she wouldn’t diagnose me! Why autistic women are treated so badly is beyond me! My son is formally diagnosed and he’s like my twin!!” – Anonymous
“I went to the doctors and talked to them, they told me I had all the traits of an autistic person but I wasn’t autistic” – Anonymous
“Diagnosed as bipolar as a teen (I’m not sure I agree?), then bpd + dyslexic in my 20s. Entering my 30s I was curious about adhd for myself. I am trying to figure things out.” – Anonymous
“Yes. [I was misdiagnosed] all my life until my early 40’s. All it took was my own research (to know) and then a follow up battle with some very ignorant & condescending professionals until an outstanding one, and two, and three. It’s all pot luck & it shouldn’t be.” – Clara MdB @Clara_MdB
“I was diagnosed bipolar at 7/8 years old, then they retracted that to diagnose me with ASD at 23 after a neuropsychology exam. I was always told it was an “atypical” presentation of bipolar. I was diagnosed with SPD as a young kid and so I joined SPD Facebook sites and started learning more about adult women with autism. I did as much research as I could, printed it out, annotated it with notes about my life experiences, and had my mom give me input from when I was a kid, too. My psychiatrist was slightly skeptical in the beginning but was impressed and swayed by my research… Nine months later I was able to be seen, and though it cost two thousand dollars, I was diagnosed with autism, generalized anxiety, and major depression. I did not hit the criteria for ADHD/ADD, though I was only 1-2 points away and I’m certain I have it (or that autism affects me very similarly) based on adult women ADHD groups that I’m in. The only diagnosis that changed was bipolar to autism (makes so much more sense than bipolar)” – Anonymous woman in the US
Adult Misdiagnosis – The Default Path to an Autistic Identity
Misdiagnosis should not be this common. I should not be able to ask the autistic community whether they have been misdiagnosed and get such a very, very high response rate. 228 people out of 295 responses said they were misdiagnosed, 77% of respondents. We don’t need to put autistic people through eight different incorrect diagnoses over a 20-year span, with an excel spreadsheet of over 30 medications tried, in order to correctly diagnose them (yes, that was a real response – “Of those [11 diagnoses listed], the only ones that are correct are major depressive disorder, a mild case of dissociative identity disorder, and autism spectrum disorder. I do have OCD tendencies but they’re more related to sensory issues and routine in terms of ASD.” – Anonymous).
Medical professionals have a responsibility to not harm their patients. This includes misdiagnosing them. And further, this includes not gaslighting or coercing patients into taking medications, whether they are correctly or incorrectly diagnosed with a mental health disorder that society stigmatizes (BPD, schizophrenia, bipolar, etc.). There are plenty of autistic people with mental health disorders due to society’s treatment of us, especially things like anxiety and depression, and even some with accurate bipolar or BPD diagnoses. For autistic people to get the right support, we need less gaslighting. We need less assuming, less biases based on race/class/gender by our mental health professionals, and more listening to autistic voices. Professionals need education. Anyone can be autistic. Due to how borderline personality disorder presents, especially in AFAB people, an autistic person can easily be misdiagnosed as having BPD, rather than being autistic.
BPD and Autism: Similar External Behavior For Very Different Reasons
For example, this article about Borderline Personality Disorder actually overlaps a lot with autistic people. The only one that doesn’t seem to overlap is #2 (“threatening suicide or self-harm”):
- “Needing Constant Reassurance or Validation”
- “Threatening Suicide or Self-Harm” – (only one that isn’t necessarily related to autistic people)
- “Having Intense Emotional Reactions”
- “Being ‘Too Clingy’ or ‘Too Distant’”
“Needing constant reassurance or validation” may be a common trait in autistic people due to being raised in an NT society. I often asked for validation as a child because I wasn’t sure what the definition of “good” was. Many autistic people are often subtlety told that they are doing things the wrong way, even though it might just be a different way. The third point is “having intense emotional reactions.” Many autistic people, especially AFAB people, have a lot of affective empathy, and feel emotions very deeply. It is also common for autistic people to have alexithymia, which means some may have trouble recognizing or verbally expressing their emotions, which may lead to intense emotional reactions due to not realizing they were annoyed or upset beforehand. The fourth point is “Being too clingy or too distant.” Autistic people are often called “cold” because they may use facial expressions differently. However, sometimes simultaneously, many autistic people are told they are “too much” or “too annoying” or “too clingy” when they are in an environment where they can unmask, especially when talking about something they’re passionate about. Somewhat ironically, I found that many of the tips in the above article were helpful for understanding neurotypical social interaction. For example, one tip even says to “pay attention to your posture, tone and volume.” This is autistic masking 101.
Clearly, much of the criteria for Borderline Personality Disorder overlaps with an Autism Spectrum Disorder diagnosis, though the reason behind these external judgments of behavior are entirely different. For autistic people who do not have BPD, it is because they have a different neurotype, and naturally act differently to neurotypicals. It is not because of past experiences, though many autistic people do carry trauma with them due to abuse or experiences of being bullied or othered by neurotypical society. It is also telling that many autistic people have experienced a diagnosis of both BPD and bipolar disorder because even different mental health professionals seem to have different ideas of what autistic people should be (mis)diagnosed with based on external behaviors. Professionals can often misinterpret autistic body language, tone of voice, word choice, and general “behavior” in completely different ways. As one autistic person noted, autistic people may answer questions differently. One person was misdiagnosed with schizophrenia because of the way a question was worded (“can you hear things other people cannot?”). The professional assumed this person was having hallucinations, so instead of asking them about auditory sensitivity, the professional simply diagnosed them with schizophrenia. Unfortunately, because of the stigma of specific mental health diagnoses, these misdiagnoses can have dire consequences for autistic people. Another autistic person has a misdiagnosis which prevented them from getting assessed for ADHD by mental health professionals.
The impact of a misdiagnosis on autistic people is real. The gaslighting of people accurately diagnosed with these mental health disorders is also real. Mental health professionals need to stop treating patients as if they can have no autonomy in their own healthcare decisions, regardless of their diagnosis. They need to stop gaslighting people, and stop assuming that the mental health system is flawless or 100% accurate. When diagnoses are only based on human judgment, written guidelines, and the perception of a patient’s external behavior through a professionals’ own biased brains, diagnoses will never be 100% accurate. And this means professionals will not always be right.
Making eye contact, having empathy, and being able to have a conversation with a stranger are not reasons someone cannot be autistic. Read about autistic people’s experiences, especially autistic women’s, AFAB people’s, and BIPOC people’s experiences.
If you are a mental health professional and are considering a Borderline Personality Disorder or Bipolar Disorder diagnosis for a patient, you need to assess your patient for an Autism Spectrum Disorder diagnosis, especially if they are specifically asking you to, and especially if they are an AFAB, femme, and/or BIPOC person. Stop invalidating autistic people. Anyone can be autistic.
Caveats: I am no way trying to say that having a diagnosis of bipolar, schizophrenia, or borderline personality disorder is bad. I believe the stigma surrounding these diagnoses is terrible, and people who have these diagnoses shouldn’t be treated as scary or ill – they should be treated as people. I am also not trying to say that medication is bad or unhelpful. Plenty of autistic people do have depression and anxiety, and other co-occurring diagnoses such as bipolar disorder, and medication can be very a useful treatment for people. The problem I am addressing here is that autistic people are receiving misdiagnoses which can further harm their mental health, through medication or gaslighting by professionals. Professionals tell them that they cannot possibly be autistic, or misinterpret autistic people’s answers to screening questions and misdiagnose them. People who are accurately diagnosed with bipolar, schizophrenia, or borderline personality disorder should not be gaslighted or treated this way either. Gaslighting from medical professionals needs to end.
*”AFAB” means “assigned female at birth.” More than just cis women are affected by biases from psychologists, diagnostic tests, and other mental health professionals. For example, trans men and non-binary people are also affected by this bias. This is why the term “women and AFAB people” will be used in this post. Trans women are by default included in women, who are also affected by this bias. This is not to say that cis men do not get misdiagnosed or harmed (many men were quoted). But I’m particularly focusing on borderline personality disorder and bipolar disorder, which are both most commonly diagnosed in AFAB people and women.]