One of the things that I struggle with the most being autistic, is knowing that the majority of people think that I am lying about everything I say. This is the most hurtful thing that I have been exposed to my whole life, as I am one of the most honest people anyone will meet. I struggle to even "white lie."
Not being believed is the foundation for most of my trauma. That trauma guides my life to this very day. The amount of shame I feel surrounding my own experience and the constant belief that I need to have undeniable evidence that I can show to people before speaking about something makes it difficult for me to connect with other people or defend myself to doctors or my employers, or get the help and support I need. I've been writing this blog trying to just reflect on the experiences of my past that I can recall in my mind rather than making sure of its accuracy with my 20+ journals because I am trying to write those events as how they are affecting me and how I see them now. This has been incredibly difficult for me to do because I am constantly terrified that someone is going to say I'm lying and I will have to go back to my sources. It shouldn't be this way, but it is.
Not knowing I was autistic and that my special interest was in knowledge itself, being the youngest in my family I was constantly belittled, dismissed and not believed. I was constantly called a "know it all" and this made me ashamed to speak up when I knew something, saw something, or understood something that my family around me did not. The worst outcome of this silencing of myself came when my sister's friend slandered our family to the point where we lost the ability to see my dead sister's children, our only link to her continued existence in our lives. Had I not experienced the chronic belittling of my knowledge or opinion, I might have been able to speak up sooner and told my sister that from what I saw of her friend she was manipulative and couldn't be trusted.
I understand that my family is not perfect, was extremely loving, and some of them had trouble with shame themselves for not knowing information that I shared, but it doesn't change the effect that their dismissiveness had on me.
The other immensely impactful disbelief in me was regarding my health. My teachers and my doctors all thought I was lying. I know from reading extensively about women with autism, that there is a a high prevalence of comorbid (co-occurring) illnesses, more than the average person, and even more than autistic males. This knowledge was only explored and discovered by what I could find, within the last 4 years. Medical doctors are not up-to-the-minute up-to-date on research so the fact that I have so many health problems at the same time seems like I am a hypochondriac, in other words, a liar. The fact that most doctors don't know how to properly interact with an autistic patient due to average doctor's not doing the research and thus influenced by media biases as their examples (white males are the only autistic people), the way that I present makes me look like a classic liar. My normal behaviors are what neurotypical people see as evidence of a person lying.
The article 10 Top Signs That Someone Is Lying 8/10 "signs" are all common autistic traits:
1) A change in speech patterns. Autistic people have unusual speech patterns, too loud, to soft, sing song, picking up the accent and patterns of the person talking, slowed down, or pausing when they need more time to think. Our normal speech pattern to a neurotypical person screams lying.
2) The use of Noncongruent gestures. Autistic people stim to self regulate. This can be in a lot of different forms, all of the gestures can seem incongruent with their speech. Our stimming screams lying.
3) Not saying enough. Autistic people have a communication disorder. I know personally I will give one word answers or take a long time to process what is being said, sometimes I will answer incorrectly if I don't understand what was said, but I am trying not to make my communication difficulties look as bad as they are. Our communication disorder screams lying.
4) Saying too much. Autistic people are usually hyper-observant. We catch details that most people often miss. I have a tendency to want to speak in chronological order, and will make sure to include all details in my explanations of things (I also am often not believed, so I make sure to include as much detail to emphasize the truth of my words). This screams lying.
5) An unusual rise or fall of vocal tone. Refer to 1.
6) Direction of their eyes. Autistic people find eye contact to be extremely difficult to maintain. Personally if I am staring at your eyes, I'm not paying attention to what you say. This is because I have learned I need to look people in the eye, I then spend the entire duration of the conversation trying to figure out when I should be looking away, if I am staring too long, on and on and on. Autistic peoples lack of eye contact screams lying.
7) Covering their mouth or eyes. Refer to 2.
8) Excessive fidgeting. Refer to 2.
If our normal autistic behaviors are all seen as lying by neurotypical people, it should be obvious how I have not been believed about anything I've said my entire life. Even knowing this overwhelming belief by everyone, that I am a liar, is because I am autistic, doesn't make people suddenly change their view of me. In fact, a lot of the times I've been treated like I am lying about being autistic, even by my employer, telling me that despite my disabilities they have no baring on how I feel or do my work. This attitude has dropped me in a constant cycle of burnout. Just when I think I am ignoring the people calling me a liar and move on with my life, I'm blindsided by an abrupt change or attitude and the burnout cycles starts all over again.
Growing up, gym teachers didn't believe my knee injuries or sprained ankles because they knew I hated gym. Not knowing how autism relates to klutziness, or that I even was on the spectrum, I was always treated as a liar, even with notes from parents. This was exacerbated by my difference in pain response. Autistic people do not exhibit the same pain response as neurotypical people. Depending on if we are hypo or hypersensitive to stimulus, we either feel pain less or more than average. As a hypersensitive autistic, my pain is acute, and as such I feel more pain all the time. If I were to exhibit the same pain response as a neurotypical person, my 7/10 daily pain would have me crying all day and unable to get out of bed. I don't have the luxury of spending my life depicting my pain to those around me, so I just chose not to. That means, if I am exhibiting pain, it's probably the worst pain you have ever felt in your life. This same belief I am lying about my pain that my teachers had towards me is the typical response that I receive from medical professionals. When asked to rate my pain, if I am not screaming and crying and give the response of 10/10, I am a liar.
This was acutely seen when I was at work and my fibromyalgia flared so bad that my pain levels was beyond something I could process and I was at work having a hard time staying conscious. An ambulance was called, but I was in so much pain I was nonverbal lying on the floor. No one really thought I was in pain because I wasn't hysterical, but I was experiencing the worst pain of my life. After having to get myself down to the ambulance on my own power, while barely being able to get out the words, 'don't touch me' and everyone ignoring the card I produced to tell them I was autistic, I was finally taken to the hospital, only to be left out in the hallway propped in a chair (when I needed very badly to lay down) for 3 hours. It was only after 3 hours when I finally had enough energy to start moaning that a medical person came into the hallway to ask what was wrong (only because I was annoying the patients around me). When I told her I just wanted the pain to stop, she told me it wouldn't be much longer and left me for another 20 minutes. When I finally was able to lay down in a hospital bed, the doctor barely talked to me about my pain, asked if I wanted opioids (which I refused for reasons), then gave me a shot of anti-inflammatories, some oral ones and told me I needed to leave. As I was waiting for the pain meds to kick in, the nursing staff came and asked why I was still there, I had been discharged, and I had to tell them I was waiting until the pain lessened so that I could get dressed and move. There was no concern, just annoyance that I was taking too much time to get out of the hospital. At no time did I feel anyone believed me that I was in extreme pain. This is just one of the many times I have felt this way when dealing with medical professionals.
If one more doctor tells me that I have to reduce my stress, I am going to tell them they will have to be responsible for funding my adherence to their medical advice in this capitalist world that is completely built to cause me stress.
I just want to live in a world where the majority of the people I interact with believe me, instead of believing me a liar. The problem is, even when people believe me, this cycle of trauma has made me incapable of believing they believe me.
References:
Health profiles of adults with autism spectrum disorder: Differences between women and men. Leann Smith DaWalt [and others]. Autism Research (2021), 14:1896–1904. https://doi.org/10.1002/aur.2563
Autism and chronic ill health: an observational study of symptoms and diagnoses of central sensitivity syndromes in autistic adults. Sarah Grant [and others]. Molecular Autism (2022) 13:7. https://doi.org/10.1186/s13229-022-00486-6
Medical symptoms and conditions in autistic women. Tslil Simantov [and others]. Autism (2022) Vol. 26(2) 373–388. https://doi.org/10.1177/13623613211022091
“Life is Much More Difficult to Manage During Periods”: Autistic Experiences of Menstruation. Robyn Steward [and others]. Journal of Autism and Developmental Disorders (2018) 48:4287–4292.