Suicidal Mind Reassigned: Female with autism, 27. Missed Signs & A Late Diagnosis
- TRIGGER WARNING -
The second part of this article contains resources, information and a memoir about sexual assault, mental abuse, depression, hospitalisation and medication, including images, which may be triggering to see and read for survivors. This part of the article will be introduced with a second trigger warning.
I received my Autism Spectrum Disorder (ASD) diagnosis late in life. At 27 years old, to be exact.
I was diagnosed with ASD while I was voluntarily committed on a psychiatric ward for people with depression. I was hospitalised there for acute stress disorder and depression, after rape and abuse (and a working relationship/ romantic relationship gone bad).
My autism diagnosis came out of the blue. I hadn't been seeking a diagnosis at all. I was hospitalised for my own mental health, to fight the metaphorical demons inside my head, and the ones outside in the real world. I was hospitalised for 7 months total, so things could calm down (inside my mind, and outside).
I didn't expect that my psychologists and psychiatrist would let me go with something new to think about: that I was on the autistic spectrum. And had been, my entire life.
Autism Spectrum Disorder (ASD), or simply Autism, is a neurodevelopmental disorder characterised by impaired social interaction, impaired verbal and non-verbal communication, and restricted and repetitive behaviour.
See the DSM-5 Diagnostic Criteria for Autism.
Autism affects information processing in the brain by altering how nerve cells and their synapses connect and organise; how this occurs is not well understood, and many studies are, as we speak, researching the disorder. There is no cure (yet).
My disorder specifically, would formerly be called Asperger Syndrome (AS), also known as Asperger's.
AS includes all other criteria ASD has as well (although symptoms in every person with autism may vary and show in a different way), but lacks delays in cognitive development and language (unlike 'classic' autism) as criteria.
The diagnosis of Asperger's Syndrome was removed in the 2013 fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), and people with these symptoms are now included within the autism spectrum disorder in general (just like PDDNOS for example).
The professionals who assessed me, tested and observed me thoroughly for 3 months, before giving me the autism diagnosis. They included my parents in the process, and talked with them about my childhood, puberty, and adolescence as well, to get an idea about how I developed, processed emotions, and which struggles I had faced in life, and how I had dealt with them.
Autism? It's different in girls, apparently. Autism is frequently misdiagnosed in women (e.g. women with autism get misdiagnosed with OCD, Anorexia or BPD instead), or not diagnosed at all. Psychologists suspect it might be because autism often shows in a different way, in women (especially women with what formerly would be called Asperger's Syndrome).
My own son (T.J, not his full name, he's 7 years old now), was diagnosed with autism early in life. He has what people before would refer to as classic autism - every 'type' of autism is now simply called Autism Spectrum Disorder (ASD) however. My son has autism with speech- and language delay. Problems with speech and language are very common among people with autism.
Around 30-50% of people with autism, don't develop enough natural speech to meet their daily communication needs.
This is referred to as non-verbal autism. I actually made a video featuring this fact once (see above), and the risks surrounding it when it comes to accidental drowning and children with autism.
I was diagnosed as autistic at 27 years old. My son, at the age of 4. It was much easier for doctors to diagnose him, because the difficulties he faced came to surface at an early age.
When a child finds it hard to pronounce words with more than two syllables, at the age when other children are speaking and telling wild tales, everyone will tell you 'something is up', and your child needs to be investigated. So at the age of 4, my son already had had his first EEG, MRI scan and blood and genetic research done.
Next to speech and language delay, my son showed repetitive behaviour, and fixated interests at an early age, with letters and numbers for example. He was able to recite the alphabet and could count to 20 at age 2, but only if you confirmed every single letter or number he said first. Otherwise, he wouldn't say the next one.
He was also interested in making puzzles, and could make a 70 piece puzzle at the age of 3, but it was difficult to get him interested in other things than puzzles, letters and numbers. While he was able to name numbers and letters wherever he saw them, much more simpler things like naming animals, or using daily communication to communicate his needs, he found much more difficult.
In the images below, you can see how my son marked letters in books or drawings with a marker, at the age of 3. You can also see an example of how he'd like to organise things, and would pull labels off of shampoo bottles (he still likes to take stickers off of anything. Tags always have to be cut out of clothing too).
When nothing peculiar came up in all the medical tests the doctors did with him, and his speech didn't improve much, and his repetitive behaviour and social interaction didn't show much progress either, the diagnosis was clear: autism.
What if your child, shows no obvious sign of struggle though, while growing up? This is what happened in my case. Nothing pointed to me being autistic, because there didn't seem to be any problems. No obvious ones, at least, not until I was much older. When there seems to be no problem, nobody will investigate it. There still were signs however, that I was autistic, even at an early age. Signs that were missed. If they hadn't been missed, my diagnosis might have happened much sooner. An early diagnosis, could have led to more guidance and help, and better tools for me to understand myself and the world around me.
Because of what my psychologist told me about specifically women with ASD being misdiagnosed, and the scientific research I read about it, I decided to write this article. To give those interested in autism in women and girls (specifically in those with autism who are able to speak and live independently), an insight into signs that were missed in my case; in a woman diagnosed with autism, at a later stage in life (27). If you wonder if you or someone you know might be autistic (your daughter for example): I tried to include as many resources, studies, awareness articles and videos in this article too, so I hope it will be of use to you.
I've taken a few months to write this blog and research the topic, so I could discuss it with my family and friends, and have a good look at myself and my own life, before writing it. So I had time, to find patterns myself. Signs, that were missed, in my case.
Like I mentioned before, I didn't seem to struggle much as a child. Whenever I was bored with school, my mother liked to remind me of the fact that I was able to sing about 50 different songs from memory, by the age of 2,5. Which to her, was a sign I had a good memory (and should just be able to get through school easily). So, I wasn't exactly a silent kid. I was talkative, social and curious according to her. It had never occurred to my mother either I was on the spectrum.
She found out I knew so many songs during a vacation in Czechoslovakia, when my family and I were on a long walk, and my parents tried to motivate me so I would keep on walking. They did so, by encouraging me to sing every song I knew, since I enjoyed singing. After some time, my mum started to realise I knew quite a lot of songs, and started to count. The number 50, stuck with her.
Being able to sing many different songs at an early age, looking back, was a missed sign. People with autism may get lost into hyperfocus, and can really obsess over their hobbies. A child being able to sing 50 songs before the age of 3, is a bit unusual, so I'm counting it as a missed sign. It's understandable my family didn't see it as a symptom of something else; they probably hoped it was a sign of intelligence, and didn't look into it further due to this hope. Especially because I was a kid that asked many questions.
My mum likes to joke about how crazy it made her, but that she tried to keep answering my questions to nurture my curiosity. For every answer, I had a new question. 'But how' or 'why' was the first thing I'd usually ask after receiving an answer. This could go on and on until I was finally satisfied and completely understood the subject we were talking about (which frankly didn't happen usually).
In a DSM 5 Autism Spectrum Disorder Guidelines & Criteria sheet by Laura Carpenter, highly restricted, fixated interests that are abnormal in intensity or focus, are mentioned as an autism-criteria. Everybody has hobbies, but when your hobbies completely consume you (and there are other symptoms pointing to ASD), and there's very little room for other interests, it could be a sign you're on the spectrum.
I was obsessed with nature and animals when I was younger, collected rocks, fossils and minerals, and was a member of the WWF and liked doing things for charities relating to nature or third world countries. Hurt animals I found, I would bring to the local animal shelter. I was a big fan of the Efteling, a Dutch fairytale theme-park, and a member of their club. I especially liked the elves and witches in the park. A CD from the Efteling with songs from the rides, gifted to me by my parents, I played for hours, week after week, just for fun. I did the same thing with audio cassette tapes with children's music when I was younger. I carried around a radio cassette player from an early age, and listened to tapes on it on repeat.
I still listen to music on repeat for hours, until this very day. It's normal for me to listen to 2 or 3 songs on repeat, 10 hours a day, for days in a row. It helps me to focus, write and work; having a familiar musical pattern to listen to. Every few days or weeks, I update my 2 or 3 songs with a new song I discover.
Self-stimulatory behaviour, also known as stimming and self-stimulation, is the repetition of physical movements, sounds, or repetitive movement of objects common in individuals with developmental disabilities, but most prevalent in people with autism spectrum disorders.
I stim by listening to music on repeat. Or, by moving back and forward on my chair, or my moving my body-parts in certain way, and through that crack my bones (I usually do this a couple of times per hour). While smoking is an addiction, it's something I do while working behind a computer while listening to music as well. I feel most urged to smoke in this setting, or when stressed or when I'm driving a car. It could be considered a stim. I can go a week without smoking on a holiday if I'm not working or driving during the holiday (and if there's no stressful situation).
As a kid, I was also member of a mineral-collecting-club, and an animal-encyclopedia-club at some point. Through these club's I'd get new minerals or pages for my encyclopedia sent to my home-address, to collect. I made self-made magazines at 9 about animal rights, and participated in fundraisings. Until I was 10 I was convinced I'd do something with animals one day, when I was older. Until it started to dawn on me that my allergies would make this impossible. My lifelong dream of living in the jungle, didn't seem logical anymore with my fish and nut allergy, and animal allergies.
I liked reading books (especially about history, archeology, animals, minerals and nature). Once I discovered fantasy and sci-fi movies, and fantasy novels like Philip Pullman's His Dark Materials and J.K Rowling's Harry Potter series, my focus on animals started to switch, and I started to get more interested in fictive worlds and fantasy. I probably reread every book in the Pullman and Rowling series at least 14 times, both in English and Dutch. If I found something I really liked, I would play with it, watch it, listen to it, read it, research it and/or talk about it, all the time. (Browsing Wikipedia, is something I do for fun.) With all my interests, my main focus was researching said interests. I was less interested in 'collecting' specific items concerning a specific interest (except for the minerals and encyclopedia pages), but more interested in learning everything about the interest.
I remember at 13, I was reading a Harry Potter book, with a Latin-Dutch dictionary next to me, so I could research the last names of the characters (many have Latin names). Around this time I also ran a Harry Potter club online, and I was moderator at another online Potter club called Zweinstein (Hogwarts). A few years later, I was an online moderator at an art chatroom and community, devoted to sharing and discussing artwork. This was when my interest in photography and art started to develop more.
I started to use the internet at the age of 9 (1999). Using the internet helped me to gather information on the topics I was interested in. It also helped me with social communication. Around 85% of my friends, I met through the internet, before meeting them in person. Communicating online with people through communities about similar interests, made it much more easier for me to meet people. I actually met the father of my son (my ex husband) online as well.
In my early twenties, I started to get interested in glow science. For a few years, my life started to revolve around make UV reactive glow food, glow experiments, and light painting and blacklight photography.
I would obsess over these hobbies, and work on them until 6 in the morning at times, if I was researching them, learning about them, or trying a new experiment.
From as long as I can remember, I saw visual snow. Visual snow, also known as visual static, is a proposed condition in which people see white or black dots in parts or the whole of their visual fields.
I was 5 when I asked my father why it was raining on the ceiling; a question he didn't really have an answer to, except for that it 'wasn't'. So I decided to not bring it up anymore. Neither did I mention that I had other visual disruptions bothering my eyes and brain. Light for example, really annoys me. So much, as from the age of 13, I pretty much started to wear sunshades non-stop, whenever I went outside. Even in winter. Especially in winter, when there are many bright white clouds in the sky, taunting my eyes, causing me to tear up the moment I come outside.
I couldn't hide from bright sunlight reflecting on the white classroom walls though, because wearing sunshades in class, would be weird. I asked a teacher about it once, but he didn't give me permission to wear the sunshades. So, whenever I had a class on the side of my schoolbuilding where the sunlight was ever present, I would fall asleep, in the middle of class. Looking at a teacher while he or she was moving in front a bright, (visual) snowy background, felt like trying to follow a constant spotlight aimed at me, which caused after images and blurred vision for me, and made me really tired.
I get the same thing with patterns. Simple patterns in a carpet or the stone wall. Patterns in windows, buildings, clothing, in the street, everywhere. They wiggle, jiggle, beam and bounce, whenever I set my eye on them. Contrasting colours seem to beam too. Black and white are the worst though. These 'colours' never appear like two colours to me. It always looks like there's some kind of wind flowing over black and white, making it beam and breathe. As if I can see every single pixel that hits my eyes, as if it glows and hits me, at different times. A dark room does not feel dark and quiet to me at all. It's filled with circulating 'wind' and 'visual snow'. Always beaming.
In my teens I started to research my visual problems, and found out more information about visual snow. When I brought it up to those around me, the first worried question I received was: you're not doing drugs are you? ;).
Because I was focussed on translating what I saw (= my problem), instead of describing the specific problems it caused to me (sleeping in class, getting distracted, losing focus, headaches), again, a sign was missed.
Visual-perception problems and sensitivity is a symptom of autism, but due to miscommunication it was not noticed in my case. The sunglasses must have been quite obvious to other people, right? Those were probably seen as a sign of me being dramatic. I was regularly told I was 'too sensitive' because I didn't take them off. I kept wearing them whenever I went outside, until this very day. In the second image below in the grid, you can actually see I'm tearing up behind the sunglasses due to the light outside.
In the Autism Guidelines & Criteria sheet by Laura Carpenter, Carpenter mentions regarding the Sensory Sensitivity symptom in people with autism as well:
B4. Hyper‐or hypo‐reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).
Coincidentally, I've always had a thing with smell. I tend to smell everything (except other people, I know that's socially not acceptable ;)) because smells are fascinating and strange to me. Usually I try to hide it.
When it comes to sound, I have a hard time understanding human voices, when there are other sounds around me, especially when these sounds are closer to me than the people who are talking to me. When multiple people are talking at the same time, it becomes quite the task to understand what's being said. It's why I always watch movies with subtitles, because if there are other sounds (background music, action sounds, etc), it's difficult for me to make out what exactly people are saying. I regularly have to ask people to repeat themselves in conversations, because I didn't catch a word, or want to check if I heard what they said correctly.
When I was younger, my parents thought I had hearing problems, so my mother took me to the doctor to have my ears checked. I remember sitting there, feeling very ashamed while the doctor was checking if my hearing was alright. My mum said she felt like I didn't listen well to her and sometimes didn't seem to hear her, which made me feel like a naughty daughter. Especially when the doctor said there was nothing wrong with my hearing.
Funnily, a friend of mine who has autism as well and was diagnosed a few months before me, experienced a similar situation with his family. He was sent to the doctor to have his hearing checked as well. There was nothing wrong with his hearing either. Him and I, were both diagnosed late in life with Asperger's Syndrome (Autism Spectrum Disorder). So the hearing check? A missed sign.
Unusual Fears, Rituals and patterns
School was no paradise for me as a teenager. I suffered from allergies, and eczema in my face as a teen, a lot. So I skipped school and stayed home, because I was afraid of what people (bullies) would say. Even when I didn't suffer from allergies though, I was still scared of going to school, due to the large crowds of people. They seemed dangerous (and had proven to be dangerous, due to the bullies). I would hide in toilets or at the library during lunch breaks to avoid people/conflicts, regularly.
In the Guidelines & Criteria sheet by Laura Carpenter, a fixated interest that's mentioned in it as well, could be an unusual fear as well, such as being scared of people who wear earrings. I've been no stranger to unusual fears.
I never try to touch doorhandles in public locations. I always pull my sleeves over my hands when I do. The same I have with copper objects. The smell copper leaves behind, is not a smell I like, so I try to avoid touching copper when I can.
When I was 7, we did a science project in school. Our teacher required two rings from two different students. We would dip these rings in petri dishes with some kind of substance in them; so we could grow the bacteria from the student's hands/rings in them. Our teacher showed us what the final result should look like: a creepy close-up of bacteria in a dish. While the project in class failed for some reason, I couldn't shake the connection my brain made with hand+rings+bacteria. Even though I never saw real evidence of the bacteria (in class), and never had the urge to compulsively wash my hands 20 times since that day, I was disgusted by the idea of rings since it happened. Even while I was married, I never wore a wedding ring due to this silly and unusual fear. So no.. Don't put a ring on it!
Another unusual and silly fear, one I did grow out of, was coincidentally related to jewellery as well, and can be linked to another criteria from Laura Carpenter's ASD sheet: 'Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change'. An example: Overreaction to trivial changes (moving items at the dinner table or driving an alternate route).
When I was 9, I spoke to a family member about a rude person. This family member mentioned very shallowly that I should 'watch out for men with golden earrings or golden chains', because they were more likely to be 'anti social'. A very not-so-2017-mindset, I must say.
A few weeks after this conversation, it was my nanny's husband's birthday. I called him uncle, like I called my nanny aunt. I was quite close with them, and visited their home regularly, so we were celebrating his birthday with the three of us, in their place. On this day, my uncle was wearing a golden chain he had never worn before. It immediately put me off, and I didn't know how to respond to the situation. I remember that my aunt tried to encourage me to clap and sing the happy-birthday song for my uncle, but I just, couldn't. I was fixated on this golden chain, and felt confused, irritated and anxious, but also ashamed, because I felt all those emotions. It was a strange sensation, what I felt. But I knew, that whatever I felt, was ridiculous, and that due to that, I couldn't communicate what I was feeling. My uncle had been nothing but kind to me in my whole life, so why did I feel so uncomfortable he was wearing a golden chain? It made no sense.
My emotional reaction was based on wrong information I was given; information that someone I trusted, handed to me. This annoyed me even more. It taught me something about prejudice and shallowness, luckily. As for the strange mixed up feelings I experienced due to a sudden change? It came back to bite me, many times.
When I did my communion, the weeks and days before the big day, I had spent by watching my brother's communion tape, over and over again. I had seen all his pictures, so I knew what the ritual would be like. During my communion, my mother appeared at church in a brown suit. On my brother's communion she had worn a white-pearl suit instead, so when she suddenly appeared in a dark brown suit, itwasn't what I had been expecting at all. I felt physically sick, confused, anxious and irritated due to it. And ashamed, because I knew my feelings were irrational. I couldn't shake the brown suit from my memory; it stayed with me the whole day.
I enjoyed planning things. A day after a birthday, I would start planning next year's party. I wanted to know what was going to happen, what I could expect, and when. Sudden change was not a huge problem when it came to my environment (e.g. things being moved), but it was when it came to events that were confirmed to happen in a certain way.
Going to bed when I was younger, meant turning the light switch on-and-off, three times, before running towards the bed. Before I would climb in it, I would look under the bed, and stick out my tongue (at the invisible monsters, to scare them).
While sitting in a car, I would softly grind my teeth when the car passed a lantern or sign. Or anything in the landscape that showed a pattern; an objects that happened more than once.
I've always been intrigued by patterns. The video I made below, about posing for photography, is all about patterns. It's a pretty autistic teaching approach to modeling huh ;)?
Moral Codes & Empathy
I started to really dislike liars and shallow people from an early age on, because the information they provided me with, caused for( emotional) conflicts in my own mind, that didn't make sense rationally. The golden-jewellery story I mentioned before, is an example of an experience that really made me dislike shallowness and prejudice, along with going through high school being judged and bullied for my eczema.
I became more stubborn about moral codes and social rules I decided to follow given I was exposed to different types of moral conflicts and situations where I was shown (a lack of) empathy when I was younger. Later in life, this stubbornness concerning my own moral codes, became both my greatest strength and greatest weakness.
Strength: it means I'm able to persist, focus and fight for a cause, and not lose sight of the goals or morals that should be achieved or followed.
Weakness: I have a very hard time, accepting that bad things happen to good people, and that justice does not always happen naturally, organically, and that one sometimes has to fight really hard to get there, or, give up.
Giving up has never been an option I could accept due to my nature, because as long as I see a flaw in the system, injustice, something that needs to be fixed, balance that can be restored, I'll try to cancel out the noise causing it. I'll try to understand it first, and then, try to fix it. Meaning, I'll go above and beyond to reach that point - even if it hurts me. Even if I put myself in dangerous situations. I can become completely oblivious to danger, when I'm trying to follow my own moral codes.
Once, my dad and I witnessed a drunk man who had punched his wrist through a glass wall, who had cut his radial- and ulnar artery by doing so. While the guy's girlfriend was hysterically screaming on the street but doing nothing to help him, and the blood seemed to be everywhere, my dad grabbed his arm, and I grabbed his open bleeding wrists to stop the bleeding, while I had cuts on my hands due to my eczema. It wasn't until the ambulance arrived and the paramedics gave me disinfectant spray, until I realised that what I had done, could be dangerous. I was glad to find out the guy didn't have HIV and I didn't catch anything from helping him.
Stubbornness, hyperfocus and limited interests can't be assigned to autism alone - many people can have all these traits, and not be autistic. However, if your logic-based nature and all traits I mentioned above start to hurt you and work against you, it becomes a problem. When it becomes a problem, it could be noticed as a sign of autism (if there are other signs as well).
- TRIGGER WARNING -
When I told my rapist with whom I was in a working- and romantic relationship with, that I was going to the police to press charges against him, my empathy and moral stubbornness, became a weakness.
I knew what was right and wrong. Abuse and rape was wrong, and I knew I had to report it. According to the law, I need to report crimes committed, when I'm a witness. Which, was incredibly hard for me, because I had been in a relationship with my rapist. I knew I did not need to testify against someone I was in a relationship with, or someone who's family. When that relationship was gone, I knew I couldn't justify staying silent anymore. I had to do the right thing, and report him.
The moment I communicated this to him, my rapist (Exurb1a) said he wanted to talk and apologise, and take me to a restaurant to talk. I agreed. The road there wasn't fun.
He casually 'joked' his friends were waiting to kill me, while we were in a remote area at nightfall, walking towards the restaurant. To make things worse, while we were at the restaurant, he confessed a horrible personal story to me, which made me pity my rapist. In fact, the story was so upsetting, I suddenly felt so horrible, I didn't know what to do. Hours later my rapist cried about it. Did I really want to press charges against my rapist, who just confessed this horrible memory? At that point - I believed him. It wasn't until much later, when more lies he told came out, and after he started to harass and blackmail me too, I started to doubt the story he told. When other people said: Pieke, maybe he only said that so you wouldn't press charges the next day, while you were there, in Sofia. Maybe he tried to make you feel sorry for him.
Interestingly, the only person (except for my healthcare professionals) who ever suggested I could be autistic, was my rapist. He once mentioned it, that he thought I was on the spectrum. And yes, people with autism, do feel empathy. It's a myth that we don't. Some of us on the spectrum have more difficulties with social interaction and empathy, but when it comes to Asperger's (all called ASD these days), 'aspies' are usually finding it less difficult to socially interact and show empathy.
I can feel empathy, understand empathy, and can rationalise empathy. I've been rationalising it all my life, understand the cause and effect of it, and the patterns you can find leading to empathy, or lack of it. I was raised by a mother who had very strong ideas about what was right and wrong. My mum taught me strong morals concerning many different topics, and through observing social interaction with people all my life, I had developed a strong opinion about it. What was right - and what was wrong. And my rapist's story? It influenced me indeed.
Originally, I flew back to Sofia (Bulgaria) to press charges against my rapist, who is an Englishman studying philosophy at a university in Bulgaria. I tried to press charges at Sofia Regional Police Station 04. Due to a language barrier, I failed to press charges.
Later that day, my rapist took me for dinner to talk and told me the story. The next day, he went to a festival in Croatia, leaving me alone and confused in Sofia. Because my first experience with the police there was so horrible, and because I suddenly had a moral conflict in my mind, I decided to fly back to the Netherlands. Once back, I went to the UK to the funeral of my friend who committed suicide (which I found out the morning after the abuse and rape), and once again back in the Netherlands, after having an ultrasound and finding out I miscarried, I was committed to a psychiatric ward for people with anxieties and depression.
I was committed because I was suicidal. I was suicidal, because my autistic brain didn't know how to handle the situation. I knew I had to press charges against my rapist, because I was taught to go to the police in case of a crime. However, I had feelings of empathy towards my rapist due to his story, causing a moral conflict. The idea something horrible had happened to him too (which he never told me about, until I told him I was going to press charges against him), broke my heart, a second time. How could I press charges against someone who was hurt, like me too?
My brain tried to logically solve the problem: if I killed myself, there would be no problem. The only two people who knew what happened, were my rapist, and me. I and I alone had the moral obligation to report him. And I suddenly 'couldn't' anymore, because of the story he told me. So the problem in this situation, was me. To solve it, I had to get rid of me. If I was gone, nobody could press charges, because there was no problem. My logical, stubborn autistic brain that was going through acute stress disorder (later diagnosed at the hospital) and depression, my sick brain that tried to follow the rules, became my own enemy.
Sometimes, you can be blindsided. An obsession with doing the right thing, and following your own moral codes, can work against you. Especially when you meet manipulative people, and liars, who use your weaknesses against you. It wasn't until much later, until my rapist started to harass me, threaten me, and blackmail me while I was hospitalised, until I realised he had been doing this.
When I 'fell' into acute stress disorder and depression, I started to get convinced by my own 'logical' brain, that I was the problem. That I had to end my own life, to protect someone else. While this person deserved no protection at all.
It didn't stop there. The moment that thought settled in my mind, I started to rationalise why everybody would be better off without me. If I was depressed, I was useless to my son. He'd be better off with a happy mother. I couldn't see the light anymore. During this time, my rapist started to become really hurtful and mean as well. It almost felt (looking back), as if he was trying to push me over the edge.
New studies suggest that people with autism, or those with autistic traits, are more likely to commit suicide, or have suicidal thoughts. Self-injury is also common among children with autism. The psychologist who diagnosed me, told me that many people who are diagnosed with ASD late in life, get the diagnosis after being diagnosed with depression first. He mentioned that in my case, the depression was one of the symptoms why he wanted to assess me.
When I was hospitalised after the miscarriage, my rapist left me to rot for 12 days, while he had promised he'd fix 'everything that happened and would restore my trust, and prove me he was really sorry about what happened'. The moment he found out I was hospitalised, he said he'd come to see me and talk. Mind you, we were still working together at this point. He didn't come however. Instead, he didn't get in touch for 12 days. After those 12 days, I started to realise what had been happening. I called him out for being a liar, an abuser and emotional bully, and when I started to doubt him more and more, my rapist tried to bribe me, to keep me silent. When this made me question him more, he started to attack me. He tried to convince me I was insane. I became so confused and scared, I told him I was going to speak out against him: about his manipulative ways, and what he had done to me. I didn't ask anything for my silence. I just said I was going to speak out.
I addressed his manipulative ways, and the result was multiple phone calls in which my rapist screamed at me and accused me of everything he had been doing instead. Before, as long as someone continued to speak in a phone call, I felt like I couldn't hung up the phone (that's changed now fortunately). I found it really difficult to set boundaries and ask for help. (Later, my nurse would help me with it and actively intervene when my rapist called me and wouldn't leave me alone.)
I felt so hopeless and scared because my rapist was suddenly accusing me of blackmailing and threatening him, while he had been doing this to me, I tweeted about what was going on, as a call for help, in the hope other people would pick up on it and tell my rapist to stop.
I tried to ignore the next calls from my rapist, until this conversation below happened.
He was threatening to put out a statement online to thousands of his followers, a statement filled with lies. A Skype conversation followed after this chat conversation, in which he said he was going to say I was threatening him and blackmailing him. He said I was psychotic, and that the abuse never happened. He tried to gaslight me. He said he had audio recordings of me, recordings on which I knew I confirmed the medication I was prescribed at the hospital, an antipsychotic called Seroquel, which in my case was prescribed off-label as a mood stabilizer and to help with sleeping, to replace my Xanax (I have written evidence from my doctors I didn't get it prescribed for psychosis - because I'm not psychotic).
The Skype call happened after I had just received a higher dose of medication again. I was blurry, feeling high, incredibly drowsy and confused. During it, my rapist asked me to repeat the medication I was on again. I remember most of the conversation as a blur, but this moment I could remember clearly. When I heard him ask it, all alarm bells went off, and it finally hit me with what kind of person I was dealing, and what his plan most likely was: he wanted to paint me like an insane person, to save face. It felt like thunder in my heard, when he asked the question. He knew I was drowsy due to the medication and not fully conscious, and he tried to make me say incriminating things about myself, so he could potentially use it against me.
My rapist knew I wasn't psychotic and knew that I didn't blackmail him, but he said he would say this to people if I would continue to speak out about what happened. He said he would tell people I was committed to a psychiatric institution (instead of being hospitalised at a psychiatric ward due to what he did to me).
The idea that my rapist could pitch a 'crazy person' story to thousands of people, with an earlier audio file as 'proof' where I said myself I was being given an antipsychotic (for other purposes, not psychosis!), with the lie that I was blackmailing him, was terrifying. Especially because I could barely defend myself where I was: there was no proper wifi, and because I have the compulsive need to listen to music all day on Spotify to feel calm, my phone's internet plan ran out of data all the time, and at this point, I couldn't upgrade it anymore because I had done so too many times. So my access to the internet was very limited. Not enough, to defend myself from character assassination, from someone who was able to reach over 300.000 people in a minute, if he wanted to.
When my rapist asked me to repeat the medication I was on again, I froze. Instantly, I tried to accommodate all his wishes. I did what my rapist wanted me to do, to protect myself: I deleted the tweets, and went offline. In return, he said he would come over to talk about what had happened. I said okay to this, because I was terrified of him at this point; of him assassinating my character.
While I deleted my tweets, in a moment of clarity the next morning, I made notes on my phone about what had happened:
I regularly made notes since that moment about what was going on, since I didn't trust my rapist anymore since then. I tried to stay polite to him however, so he wouldn't suddenly spread a bunch of lies about me online, while I was still hospitalised (and I couldn't defend myself well).
Because the calls didn't go unnoticed on the psychiatric ward, other people finally slowly became aware of what was happening. I hadn't told specific details to anyone close to me about what had been going on, because I was ashamed, and terrified of my rapist, and also still had mixed up feelings about the whole situation. Fellow patients (who became my friends) started to pick up conversations that happened over the phone, and started to listen in, and started to point out the manipulation that was happening from his side. Nurses started to monitor calls and cut them off, and slowly I started to talk to them about what had been really happening. It took months before I told everything - so a few weeks later after the Skype phone-call threat, when my rapist came over, the hospital ward wasn't aware who my rapist was when he came to visit.
I thought I could handle the situation when he came to visit because I was very naive. My rapist took me outside the hospital to talk - which I was allowed at this point for a few hours, under companionship - and we went to a cafe that was across the hospital's hostel. At the hostel I knew two fellow patients I was friends with; I asked them to keep an eye out and stay at the hostel, in case I needed to leave the cafe and talk. I felt like I had protected myself this way, but this was an illusion.
When I told my rapist I couldn't be his friend anymore, his direct reply was (no joke): "Did you know I once set fire to a woman's computer?"
It felt like a threat, and I communicated this to him, due to which he got 'upset'. Not much later we fought outside the cafe, and screamed at each other, which my patient friends witnessed from the hospital's hostel (they watched us from the first floor window).
Eventually, my rapist and I went back inside again to talk. During this time I felt really unwell, due to the conversation, the medication, and all the noise inside the cafe. We moved the conversation to the first floor of the cafe, where my rapist had rented a room, so we had a more quiet place to talk. This was a really stupid idea, and I regret I put myself in this situation until this very day, because what happened next still gives me nightmares.
I had a panic attack while I was alone with him, and a pretty severe one I might add. I couldn't breathe, was shaking and crying, and felt like I was going to die. My rapist tried to calm my when it happened, by grabbing me and hugging me. Soon after, he started to stroke my body, while I was still crying in his arms and shaking. He touched my butt, boobs, and even in-between my legs, and said I was 'wet', all while I was crying still. I was so confused due to what happened, I didn't know what to do. Everything was a blur and he then stated we probably 'shouldn't do this' and soon I ran to the hospital's hostel to see my friends. I instantly told them what happened.
In this study about late-diagnosed women with ASD, experiencing sexual abuse was something found to be an experience linked to many women (with ASD) in the study:
It's not a symptom of autism, experiencing sexual abuse, but this study could be an indication that women with ASD are more vulnerable when it comes to experiencing sexual abuse, so for anyone reading who has a daughter with autism: take this study into consideration when teaching your child about consent.
Sadly I can add my experiences to these statistics. Not just my experiences I wrote about already; I have many more sadly. Both happened with strangers, and people I knew.
I did press charges against my rapist I wrote about. Not only for the original rape and abuse that happened, but also for the sexual assault that happened while he took me out of the hospital. My rapist took advantage of me while I was in a vulnerable state, and sexually assaulted me a second time, while I was in a state of reduced consciousness. To give you an idea of what a combination of Seroquel, Zoloft and Xanax can do in the beginning when you start with these medication treatments (after a while you get used to the medication, and side-effects like this usually disappear), below two examples of things I wrote after receiving higher doses of my medication. (I'm bilingual; I speak and think in English and Dutch, but I write in English mainly).
As you can see, most of it doesn't make sense, and/or is extremely chaotic and disturbing. It's not hard to see these things were written by someone not mentally well and under influence of strong medication.
After what happened when my rapist visited me at the hospital, he tried to use it against me. He actually claimed I tried to have sex with him in a phone conversation, of which I made a recording because he kept harassing me (which I made public).
I stayed silent and didn't go online for 6 weeks total, while receiving anti-depressants, mood stabilizers, anxiety medication and sleep medication to get me in a better and stronger mental place, while receiving therapy. When I finally felt strong enough, and when I was moved to a different ward in the hospital because the one I stayed at closed; a ward with good internet, I broke all contact with my abuser, and instantly spoke out online.
I shared every personal detail about myself, everything my rapist said he'd use against me, everything I was afraid he could use against me, to break his power over me. To make sure, he couldn't blackmail me anymore.
The result was that his fans started to attack me. That people called me a liar. A whore, a slut, a psychotic bitch, a cunt, a drama queen, a psycho. People sent me messages that I should kill myself, while I was suicidal and hospitalised due to what my rapist did to me. It led to my rapist's sister threatening me, and me having to press charges against her as well. I'm currently in the process of pressing charges against some of my rapists friends as well, for slander and spreading lies about me.
However, in a way it has also set me free. Because I felt forced (out of anxiety) to share every detail about what had happened, and due to how I was shamed for doing it, my skin thickened. Before, I had been quite private about my life. Now, it was on the internet. My whole village knew. My whole social network knew. I had admitted on social media everywhere I was hospitalised on a psychiatric ward for depression, because I was terrified my rapist was going to spread lies about me and say I was in a mental institution due to being psychotic instead (which I'm not). At random times I would walk into people, parents of former classmates for example, who would suddenly confront me with this information. Sometimes by giving me a hug out of nowhere, or kindly asking me about it.
People had seen me in an incredibly vulnerable state. At one point while hospitalised, I livestreamed on Facebook while crying in front of the police station, because the police told me I couldn't press charges there.
This livestream video happened while I was incredibly emotional, on medication, and not in a great place. People on my social network, were quite kind to me about what was going on. Outside my social network, fans, friends and family of my abuser, were not.
After months of therapy and medication to deal with the shaming, and my privacy having disappeared due to my own fault (but to me it felt like I had had no other option), I started to write again, and realised, I could write more easily and open now. People had seen me at my worst, so I decided I might as well use my bad experiences regarding different topics (sexual violence, mental health, experience with pressing charges, online bullying) for something good. Turn those experiences into useful information. That's what I've been doing ever since.
Female with autism, Diagnosed at age 27
I didn't embrace the diagnosis at first. When I started to realise the specialists might be right, I had a severe panic attack at the psychiatric ward, in my own room. Another patient found out and warned a nurse, who helped me through an hour of tears and asphyxiation.
What worried me the most was my psychologist's remark about my depression being a sign that led them to research if I was autistic. That my brain had been rationalising suicide, and that the conclusions it used to rationalise it were so dark and ridiculous. Around the time I was diagnosed, I had been on anti depressives, anti anxiety medication and mood stabilizers for a couple of months, so I finally started to realise what had been going on in my brain the months prior. How sick and depressed I had been.
I cried this to my nurse, and how it terrified me that I could be autistic, if my autism brought me here (voluntarily hospitalised for depression and acute stress disorder). The idea of being diagnosed as autistic made me feel hopeless and even more vulnerable than I already felt. I had previously screamed it at my rapist in anger; that they were thinking about diagnosing me with it, but that moment, on the bathroom of my own room in the hospital, it really hit me. Finally, I also started to really talk, about everything that had been happening. To the nurse, to the people around me. Specific details I had kept out for long finally came to surface.
So originally, the diagnosis felt like a death sentence. The idea I needed pills to feel healthy again, because my own brain worked against me, didn't make it sound to me like I should be alive at all. It sounded like I had a brain made for self-destruction instead. As if I didn't belong in this world.
Feeling like your brain is set-up for self-destruction is not an amazing feeling. It took a lot of conversations with my family, friends and healthcare professionals, to realise this wasn't the case. To realise, that something bad happened to me, something someone else did to me, and that it turned my world upside down. That I couldn't have prevented it, and that it wasn't a rule for how my mind would react to new situations, for the rest of my life.
I started to receive help based on my autism diagnosis. Since I left the hospital and hospital's hostel, once a month, I have an autism specialised social worker who visits me, to discuss social situations with me. We talk about conversations or interactions I've had with people, and he helps me to recognise manipulative and bad behaviour in people. He's my 'back-up check'; someone outside my family and friend circle (whom I now ask their opinion more as well regarding similar situations) I can talk to.
I was offered help in other areas as well (thanks to the great healthcare system in the Netherlands), but my social worker and I soon figured out I didn't need much help regarding other things. The biggest problem I have personally, is that I can be quite gullible. If I'm in a friendship or relationship with someone, I trust people blindly, and don't expect them to lie, manipulate or use me, until I have crystal clear evidence they do.
I'm not naturally paranoid. After 2016-2017, I can say that has changed, luckily. I'm far more cautious now, and speak more to my social network about what's going on in my life. Previously, I believed I had to keep everything friends or my significant other told or did, private, out of respect for the relationship and someone's privacy. Now, if people do strange things or tell me questionable stories, I talk to my social worker, psychologist, family or friends about it. It helps me to get other perspectives, and make better decisions.
I've started to embrace my autism diagnosis now. My most autistic traits, like documenting information, analysing patterns, and restricted interests and hyperfocus, I've started to use for activistic activities. The glow experiments phase has passed. The last 12 months, made me think about my childhood a lot, and also my roots in activism. Only this time, my interest has changed from animals into human beings.
Due to being hospitalised, a friend of mine and a brother of a friend of mine committing suicide between 2016-2017, and my own experiences with sexual violence and mental health, and all the friends I met through the hospital.. I'm now writing information about all these topics, and collecting information others have shared about it before, to share with you as well.
And that, is a good thing. In a way, I have found a new purpose in life. I'm planning to spend a lot of time on activism regarding mental health and sexual violence, and am currently collaborating with different people to start projects about these subjects. Being autistic, might just come in handy when you're an activist, when you want to expose injustice, faults in the justice system, and in society in general. So I'll be focusing on the good sides of being a woman with autism, who's raising a son with autism, and will keep learning how to navigate this strange world, we're all part of.
I hope you enjoyed reading this article.
Below, a compilation list of (possible) autism symptoms I described in the article that were missed in my case, along with some other characteristics of my personality, body and education info, some things I didn't mention before.
I am an ENFP personality type.
I am an autodidact. I only have a high-school diploma. Everything I make/share on my blog I taught myself. I found I could study better when studying alone, while not being distracted by many other people.
I am bilingual. I think, dream and speak in English and Dutch. I mainly think in English however, even though I was raised Dutch. Apparently I speak English when I wake up from sedation for example (after a medical procedure).
I became a mother at 20 years old. My son has classic autism, with speech and language delay.
I have auto-immune diseases like (food)allergies and eczema. My allergies can cause anaphylactic shock and asthma. I may get eczema under severe stress.
Social Interaction and communication
No problem keeping eye-contact, but I prefer to watch away, and back again frequently, while talking to someone. It helps me to focus.
No problem reading or understanding emotions.
My psychologist mentioned that maybe one of my autistic traits was my obsession with emotion in my work, and due to this obsession, I learned to identify emotion very well at an easy age.
Met most friends online first, before meeting them in person.
Prefer to be 1-on-1 with someone, or to be with a small group of friends.
I do not like parties, unless I'm with a group of friends attending one. I rarely go out. I prefer to meet with my friends at our own places and hang out.
Difficulty detecting abusive, manipulative or harmful behaviour in others, especially when having an emotional relationship with people involved.
Difficulty to detect lies
Asking a lot of questions to understand what people mean or think, to verify their intentions of my understanding of their behaviour and/or intentions.
Blunt, open and honest when people ask personal questions
Due to my need to understand other people, and my own bluntness and honestness (this is something my psychologist pointed out to me), I'm more vulnerable and a potential target for malicious people. It's something I've been working on since I figured this out.
Sensory Sensitivity and rituals
Sensitive to bright light and patterns (direct sunlight on white walls being too bright already).
Hurts eyes, causes tearing, headaches and sleepiness.
Wearing sunshades at all times outside due to this.
Patterns are distractive, wiggle jiggle, hurt eyes.
Sensitive to sound
Difficulty understanding human voices when other sounds are present or closer to the ear than person speaking.
Need to listen to music on headphones on repeat when working (+8 hours a day). Not able to work without headphones with music on due to distraction.
Need to listen to music on headphones when alone outside 'in the real world' without family or friends, at all times, to feel comfortable.
Once I had a car accident on my bike while wearing headphones in traffic (very stupid, don't do it). The driver and I both made faults in this situation. He actually took off and left the crime-scene, police had to chase him. My bike was completely ruined and I in shock, but luckily I only had a small concussion. I never cycled in traffic anymore with headphones on since that day. In fact, I rarely cycle since this day.
Visual snow in visual field.
I stim when I'm anxious, uncomfortable, or when I need to focus.
Moving forward and back on my chair to calm myself, cracking body parts.
Applying hand-cream on my hands or face cream below my nose.
I always carry hand-cream and/or face cream with me and apply it multiple times a day. If I accidentally forgot to bring the cream with me somewhere, I feel extremely uncomfortable, and when I can, I will instantly buy a new cream if I'm able to at that moment.
I used to have eczema under my nose as a child. Even though I haven't had it anymore for years, I still apply facial cream on the area multiple times a day.
Wearing headphones, listening to the same song on repeat for hours.
I bite on blankets when I'm under one or blow warm air into one while my mouth is pressed against it, to feel the heat intensify in the fabric
As a child (until I was 12) I used to munch/bite my sleeves and do the same thing.
Smoking. (Some people might argue this isn't a stim)
Only wearing clothing or things that feels comfortable (except for bras, can't get around those with my cup-size).
Trousers (especially jeans) feel very unnatural to me. I never wear them and disliked it when my parents tried to get me to wear them. when I was younger It's skirts and dresses for me. Preferably dresses.
I don't wear jewellery because it feels unnatural as well and I dislike metals (I'm trying to get over this though). My ears are not pierced.
At the hospital ward, I started wearing bonnets for some reason.
My autism-psychologist pointed it out, and asked me why I did it. I couldn't answer except for that it was comfortable, until we started to map my daily behaviour at home. Then my psychologist linked it to the fact that I normally wear headphones all day while working behind the computer. Then I realised it might be because I like to have my head and ears covered.
If I find clothing that fits really well, I buy it in different colours or multiple times.
Currently I have the exact same dress 7 times in 4 different colours for example, my favourite top I own 12 times in 5 different colours, and my 3 favourite vests I have twice in two different colours.
Mentioned as obsessions, because really, I spent hundreds of hours on these interests, at different times in my life, not doing many other things except for occasionally seeing my friends. These hobbies would consume me, and often keep me up late until the morning.
If there's something to pop, I will pop it (zit or blackhead wise). Skin irregularities fascinate me. My friends let me clean their faces (blackheads and zits) regularly. After doing it, I feel amazing, and my friends like how happy it makes me (and how clean it makes their faces). I have the most disgusting stories about horror zits and blackheads from my friends :-).
Obsession with singing and lyrics.
Able to sing 50 songs at age of 2,5
Able to repeat lyrics to pretty much every song I've heard a couple of times. Even if I haven't heard the song in 10 years.
I still know phone-numbers of most of friends from junior high.
I don't have a photographic memory, but my memory is pretty good. I never forget a face or place, and can usually recite conversations & what was said, and unimportant details or facts about things.
Obsession with animals, nature and animal rights (7 years total).
Fundraising, making 'magazines' about animal rights, being a regular visitor to animal shelters to bring hurt animals.
Obsession with fantasy.
fairytale park (9 years total).
elves (8 years total).
witches (12 years total).
Harry Potter series and His Dark Materials series (10 years total).
Obsession with theatre (6 years).
This taught me a lot about emotions and expressing myself.
Attended theatre school for a few months. Dropped out because I didn't like the jealousy between students, and because I was more interested in filmmaking.
Obsession with moderating online social communities.
Ran a Harry Potter fanclub online (4 years total)/
Moderated a second Harry Potter fanclub online (3 years total).
Moderated an art-community chatroom and community (10 years with pauses in-between).
Obsession with art and photography (19 years).
I started doing photography at the age of 9, when my faster gave me his first digital camera to play around with.
I quit fashion photography because of moral conflict. After this, I also quit photography in general as a hobby and started focussing on film more.
Obsession with glow experiments and blacklight (4 years total and counting).
Getting justice. (1 years and counting)
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