Autism rarely visits on its own.
This diagnosis seems to always be paired with one or more companions. Sometimes, these companions are full diagnoses on their own, such as ADHD, Schizophrenia or an Obsessive Compulsive Disorder(OCD) . Other times, these companions are less known, almost invisible even. They lurk just around the corner, continuously just out beyond your reach. When left in the dark, they can become demons that slowly consume your energy, bit by bit. These companions often go unrecognised by many caregivers, psychologists and doctors, although most of them do have a name if you dare to speak it. I say dare, because autism on its own is stigmatising enough. Pronounce the names of a few of these accomplices in your doctors office or to your friends and you can expect a few eyebrows to be raised here and there. I like to call them 'shadow figures' or 'shadow conditions'. Let's pull a few of mine out of the dark, shall we?
Synesthesia is a perceptual phenomenon in which stimulation of one sensory or cognitive pathway leads to automatic, involuntary experiences in a second sensory or cognitive pathway (thank you wikipedia). For me, synesthesia mostly means that sounds and light very often lead to an involuntary, physical reactions. When my fingers hit the keyboard on my laptop, my ear canals start to spasm uncomfortably. Loud noises can produce a sharp pain deep inside both sides of my head. The dancing of light, reflecting off, for example, a pond, can make my eyes well up and bring cramps to my chest area. ASMR sounds, in turn, makes my skin itch in a quite painful way. But that's just me. For others, like my husband, synesthesia means that numbers are associated with their own color. The number green is blue, four is green and five is red, according to my hubby, who can't help but to associate the two. There are many forms of synesthesia, and some can be quite disabling. Misophonia, for instance, is defined as an intolerance to sound, often leading to instant aggressive thoughts and behaviours and persistent avoidance of the triggering factor. Synesthesia is attributed to an increased cross-talk between regions of the brain that are specialised for different functions. And although this phenomenon can exist on it's own, the likelihood of having synesthesia is greater in people with autism.
Maladaptive daydreaming, also known as excessive daydreaming or a daydreaming syndrome, is a disordered form of absorption by one's own mental imagery which is often very vivid and involves elaborate and fanciful scenarios. Maladaptive daydreaming can become so severe, that it can replace human interaction and may interfere with normal functioning in one's social life or work. For me, maladaptive daydreaming is the biggest crippling factor when it comes to my career. Ever since I was a child, I would lay on the floor in the middle of the living room, staring at the ceiling for hours on end. My family would have a hard time connecting with me, as I was off drifting in alternate universes. In my late teens and early twenties, I would cancel on parties and social events, just to be able to have hours to myself where I could just drift off (not to forget that social events were highly uncomfortable for my autistic self). Now, during my office days, the urge to seclude myself and submerge fully into an alternate fantasy is almost uncontrollable. And since during my daydreams, I'll stimm, have weird facial movements, murmur to myself, start laughing, jerk and twitch, it's not something I can secretly do just inside my head. People around me will notice.
These days, I see my son doing the same. He has trouble finishing his dinner because he'll be absorbed in a completely different world. He'll talk to himself, start laughing, make faces all while trying to eat his fries. I often joke to my husband that I have at least three other lives that I live inside my head. Sometimes the main characters are a version of myself, and sometimes they're the opposite. Sometimes my daydreams can lead to great insights or help me process sadness, anger or depression. Through a variety of characters, with whom I can have a real emotional connection, I explore worlds and possibilities beyond my reach, receive complete revelations or become absolutely traumatised. The trauma can last for a few days, wear off and be absent for a few weeks, only to come back during a restless dream. It's like I'm not just part of this world, but many which go unnoticed by others. It's like living in a matrix and sometimes the people closest to me say I should write science fiction novels. If only I could tear myself away from my daydreams though...
Maladaptive daydreaming is often associated with ADHD and OCD, although it is also widely reported throughout the autistic community. I theorise that as autistic people often need more time to process information, excessive daydreaming might be a very necessary way to do so.
Alexithymia is a personality construct characterised by the inability to identify and describe emotions experienced by one's self or by others or to display one's own emotions properly. It does not mean that one does not experience emotions. People with alexithymia can experience the whole range of emotions that exist, they just cannot identify them and will often describe their emotions using physical cues ('I feel tired', instead of 'I feel sad'). They will also have a lessened ability to express their emotions non-verbally.
In personal relationships, alexithymia is my biggest challenge. The connection between what I feel, and what I'll display non-verbally, is completely skewed. I can come across as angry and annoyed when I feel genuinely sad for someone, or I'll non-verbally show that I am alright, whilst slowly dying inside. Also, I can feel a great amount of emotional discomfort without being able to pinpoint what it is I feel exactly. Am I sad? Am I angry? Am I over the moon with excitement? I often haven't a clue, to be honest.
Alexithymia, for me, can lead to an array of interrelation problems.
- People get confused by my non-verbal communication. I may come across as coarse, emotionless, uninterested, angry or sad, when I myself, feel nothing of the sort.
- I might think I am displaying that I'm in distress, when in reality, people think I'm fine ('She will be alright'). It leads to confusion on my part as I think I'm clearly demonstrating that I'm upset, a feeling of loneliness and the experience of being misunderstood. Especially when autism leads to mutism in my case, it is next to impossible for me to let people know I'm not well.
- I take longer than the average person to figure out how I'm feeling about something. When someone says something painful, I might not be aware of it until hours after. However, circling back to the painful topic, is often incredibly difficult for me.
- I have a really hard time theorising about how people may be feeling. This part of alexithymia seems to be linked to autism, which is characterised by a a disfunction in cognitive empathy. As a result, I tend to be very direct, rude and unbridled un my communication. And I also expect people to be direct, rude and unbridled towards me because it sometimes seems like to only way I won't get lost in social pleasantries.
It is unclear what causes alexithymia exactly. Early studies showed evidence that there may be an interhemispheric transfer malfunction among people with alexithymia. In other words, the emotional information from the right hemisphere of the brain is not being properly transferred to the language regions in the left hemisphere, as can be caused by a decreased corpus callosum, often present in people who have suffered severe childhood abuse. Alexithymia also often co-occurs with disorders such as autism and ADHD, as well as post traumatic stress syndrome.
Cyclothymia, also known as a cyclothymic disorder, is a mental disorder that involves periods of depression and periods of hypomania. Hypomania is a mood state characterised by a lessened control over one's own emotions and impulses and an elevated or irritable mood. Hypomania differs from a true mania - as seen in a bi-polar disorder - in the sense that people who endure hypomania show no significant functional impairment. In other words, hypomania often doesn't hinder them, their relationships or their work life but some people can display inadvisable behaviour, experience hyper sexuality or a decreased need for sleep. Contrary to a bi-polar disorder in which episodes of depression and mania have to last for at least two weeks, the episodes of people with cyclothymia can last anywhere from just a few hours to a few days at most.
For me, cyclothymia means I basically want to divorce my husband once or twice a month, pack up everything and move to a deserted jungle island for... well... forever. It can also mean that all the chores I have been dreading during my depressive episodes can be taken care of within a day and I can really buckle down and do the work of two people for two or three days in a row. I've long thought that these episodes were related to my menstrual periode and of course, hormones do influence my episodes. However, the two don't align perfectly and episodes can occur separate from my menstrual cycle. I think rather, that my episodes are linked to my states of overwhelm. A meltdown can send me into a depressive episode. A hypomanic episode, on the other hand, is more difficult to predict.
Insomnia, parasomnia and sleep paralyses are common sleep disorders in people with autism. As if everyday life wasn't hard enough already. Insomnia is characterised by a difficulty falling asleep. This can happen at the beginning of bedtime or after one wakes up in the middle of the night, for instance, to use the bathroom. Without sleep medication, I can wake up at three in the morning to go to the bathroom and won't fall asleep again until 6 am. Yes, people, it is a joy to be me.
Parasomnia involves abnormal movements, behaviors, emotions, perceptions, and dreams that occur while falling asleep, sleeping, between sleep stages, or during arousal from sleep. Parasomnia involves behaviours as sleep walking, waking up in a state of confusion, night terrors and even sleep related eating disorders. Even though I often sleep walked when I was a child and had frequent night terrors, those seem to have subsided as I grew older. Related to parasomnia, I now often experience lucid dreams (where one is aware of the fact that he or she is dreaming), Hypnagogic jerks (the feeling of falling as one drifts off to sleep) and hypnagogic hallucinations (visual and auditory hallucination as one falls asleep or wakes up).
Sleep paralyses has been my bedtime partner for as long as I can remember. I often find myself waking up in a state of paralyses. I am sometimes able to move my mouth or wiggle my toe, and for several minutes, I can be struggling to wake up fully. It is exhausting, especially when these episodes happen multiple times at night. Luckily, and in contrary to many, I do not experience demons sitting on my chest, the feeling of not being able to breath, or the feeling that someone is watching me, which is quite common in people who experience sleep paralyses.
It is the experience of these sleep disorders that allow me to tell you that the movie 'Inception' starring Leonard DiCaprio is based on truth. Bare with me as I tell you about how absolutely, out of this world-weird the combination of these sleep disorders can be.
Not too long ago, my husband, my kids and myself went on a holiday to Disney land. Needless to say the experience got my brain in overdrive and I had been struggling with sleep for a good two or three nights in a row. This particular night, I fell fast asleep quickly, but even before midnight, I woke up in a state of complete disorientation. Here's what happened.
During the night, I wake up in a state of sleep paralysis. I know I'm on my own bed but I can't move anything, I can't even open my eyes. Yet, I'm wide awake. I hear my husband shuffling back of forth across the bedroom. He's probably getting ready for bed. I try to give a sign of life, hoping he'll help me wake up, but it's useless. After several minutes of trying, I finally wake up and see my husband sitting next to me on the side of the bed. Relieved, I tell him I had yet another awful sleep experience and as he gently rubs my shoulders, my attention is suddenly drawn to the doorway. For some reason, all the furniture in the neighbouring room is colliding with the wall just behind our bedroom door. It's like gravity has moved from the floor to the wall and everything is falling towards it. I carefully get up from the bed, mention to my husband that I must be dreaming and walk toward the light switch. If you've seen 'Inception' you'll know that the key player is using a spinning top to determine whether or not he's awake. If the spinning top keeps spinning, he's dreaming. If it slows down and falls over, he's awake. I have taught myself this technique ever since I was a little kid. If I flick a light switch and the light doesn't turn on, I'm still sleeping. If they do turn on, I'm awake. In my dream with the furniture crashing into the wall, I flicked the light switch and the light didn't come on. I was still dreaming and the whole conversation I had with my husband, wasn't even real. Again, I feel like I wake up in another state of sleep paralyses. And again, I try to wake myself up. But instead of doing so, I plummet into yet another dream. I'm in castle, which is bordering the water. I'm walking by some glassless windows as I see my son standing on the edge of one of them. I freeze. I don't want him to fall in, but as I manage to slowly walk towards him, he loses his balance and falls in. I dive after him into the cold, dark water and as I grab him, I suddenly see a crocodile approaching. There's no way we'll get out in time and as the crocodile launches towards us, his mouth wide open, I wake up screaming. I sit up straight in bed and try to calm myself. As I catch my breath and look around, I realise I'm in an unfamiliar room. This isn't the same room I fell asleep in. I walk towards a light switch, flick it and notice the lights don't come on. I'm still not awake! I'm starting to get desperate. I don't have long to think about though, as without warning, I fall back into my previous dream. I see my son standing on the edge of the window again and know he'll fall in. Instead of trying to grab him, I grab a weapon to kill the crocodile. I've been in this dream before, so I know what will happen. But the dream stops as soon as I realise I'm in one. The scene shifts and suddenly, I wake up in a cave now filled with crocodiles. They are crawling everywhere and there's no way to get passed them. I'm surrounded without any possibility of escape. I remember thinking to myself that this is absolute madness. There are no light switches in a cave and I must still be dreaming. The realisation puts me back in another state of sleep paralyses. When finally, after battling with my lifeless limbs for minutes on end, I manage to wake myself up, I instantly get up and walk towards the light switch.
Can you imagine the look on my husbands face as he finds me flicking the light switch on and off in the middle of the night? I must have looked like I had lost my marbles. I guess in a way, I did. After I had reassured myself enough that this time, I was finally, truly awake, I had an incredible meltdown which lasted for days.
These are just a few examples of lesser known disorders and inconveniences that can accompany autisme and/or ADHD. Do you have a disorder or condition that is lesser known to the public? Crazy dreams maybe? I'd love to hear about them. Make sure you leave them in the comments below.