This blog post forms a continuation of my dad’s post. He didn’t dare to share something relating to me because of the stigma which this has. I will do what he didn’t dare.
Trigger warning: This blog post discusses mental health subjects which some people could be sensitive to.[ez-toc]
If you’ve read my dad’s post, you will know that I have been diagnosed with several disorders and syndromes. One of which is an autism spectrum disorder, coming from a former diagnosis of childhood disintegrative disorder (Heller’s syndrome). And this is one of the disorders a lot of people believe they understand it, while the majority do not. The lacking knowledge about just autism spectrum disorders already affects me on a daily basis.
Autism spectrum disorder
When it comes to autism spectrum disorder, people always think of the 2 outer sides of the spectrum. Those with very little symptoms, those with primarily the former diagnosis of Asperger’s. And those with very severe symptoms, often combined with intellectual disability and being non-verbal. The fact it’s a spectrum disorder and there is a large part between these 2 is often seen as if you’re telling some kind of crazy story–they just do not believe it–regardless of the autism spectrum disorders being exactly like that.
And that’s not even the worst of it. As the worst is how people always think of the obsessive behavior, that previously was typical to the Asperger’s syndrome, as something all those with an autism spectrum disorder have. The truth is that this doesn’t have to be the case. And for me, it’s not the case. According to my psychologist, the symptoms which are applicable to my autism spectrum diagnosis in this category are my stereotyped use of speech (idiosyncratic speech) and my hypo- and hyperreactivity to different forms of sensory input.
But what do people really expect? I was not diagnosed with Asperger’s before! That’s also why the differences between the forms of autism spectrum disorders are so important.
Still, when I am in any sort of problem with another, I always get blamed because I am supposedly “too obsessive because of autism” or other reasons which always come down to biases about my autism spectrum disorder. And when trying to explain they’re wrong, it only gets worse. My diagnosis is used as a sort of free pass to harass, bully and treat me as less than being human. Often while not taking one look at themselves. It is like I recently got harassed by someone who has clear mental problems. But as she never got diagnosed, she sees herself as perfect. Her parents believed she was perfect as well, so why visit a psychologist for the clear problems she was having and was pointed to by 3 psychologists who were in our friends group..?
And people do not care about the consequences of their actions. They just go on and on, getting worse and worse. They literally push you to the worst acts. Which I say from personal experience. As things have become so bad for me that I have attempted to take my life. Yes, I am not going to deny it, regardless of the backlash I can get for just saying the truth. The worst part of it, the other side literally kept even saying that I should do it… I hurt a lot of people I love by almost actually succeeding, including myself looking back at it. It’s really the worst choice to ever make. I know now but I didn’t realize at that moment, my mind was clouded by the negativity others put into it.
However, unless you’re an influencer, you’re usually not even allowed to speak the truth these days. While this is the truth I just stated. You have to crop it up until you actually do bad acts by becoming too depressed and believing the negativity stated by the hateful people. And while a lot of people wish to deny it still, the high number of suicides these days are directly caused by how toxic the internet is. Which social media and video game communities are the two worst of, without any doubt. And read again if you didn’t notice, I didn’t write video games but the communities. As the reality is that video games can be relaxing, even shooters. It’s the communities behind the games where the problems exist. It’s like while trying my first game of League of Legends, a massively popular online game, I got harassed by a guy over not playing like a professional. First game and last game, as I stopped the game instantly. It’s more often the people that spoil games and cause the negative beliefs, and far less often the games themselves.
And we can make the circle round again, as the video game communities are also known for harassing by the usage of the term “autist“, which is the official recognized way to name those who are autistic. You’re not “an autistic” as people annoyingly say a lot. Autistic is an adjective, autist is a noun. Many people don’t understand what it means and use it just for anyone who is outside the expected ‘normal’ ways.
So let’s actually talk about autism spectrum disorders. Unlike a lot of people know, it’s far more than just social-communication and behavioral differences.
It’s like many autistic people, myself included, have sensory problems. And like I stated already, this could be both hyporeactive and hyperreactive. For those who don’t understand: hypo is too little, while hyper is too much. And most of these issues you probably have heard about before. It’s like a lot of autistic people are hypo- or hyperreactive to visual aspects, sound, touch, smell and taste. But less people are aware the other sensory processes that could be impacted include balance, body awareness and internal body senses. The last one is something even a lot of psychologists fail to take enough awareness of. As when interoception is negatively impacted, it could lead to conditions like bulimia nervosa and anorexia nervosa. Which is recognized knowledge. But while looking at online articles, the connection is nearly never stated. It’s always criticism about eating too much or too little, exercising too little or too much or about the medications. There is not often actual recognition of the disorder playing major parts in it, too.
And to be personal about sensory issues: my youngest brother, Aleks, and I are both hyperreactive to touch. Not often are people honest enough about this. It’s always about the touch of other people or fabrics. And it is true wool clothing are the worst. But the reality is that all sort of touch that can be bad. It’s like sitting on a chair can already be really hurtful when the sitting area is not smooth or the back area has openings. And you see these kind of chairs often, even at doctors. There is more interest in how good things look, not how comfortable they are. People might think I’m strange but factually the way average people are is way stranger. A chair is there to sit upon, not to look good. It’s not supposed to be an art piece. And when it is an art piece, you shouldn’t be sitting upon it…
But all of this is not as bad as those people who just assume they have disorders, even while they haven’t. The so-called self-dxers, meaning people who diagnose themselves. It’s a bigger problem than many might suppose.
It’s like recently I was looking up more information about non-24-hour sleep-wake disorder, the condition both my dad and my little sister have. I came across a video on YouTube in which someone self-diagnosed himself with it. Even while it was very clear to me that he didn’t have it, based on both knowing the disorder but also knowing the disorder he clearly does have. The disorder he does have is extremely likely narcolepsy, although I’m not able to say with 100% certainty because I am no doctor.
Non-24-hour sleep-wake disorder
As non-24 is a rare condition, let me explain it a bit. Non-24 is a condition in which people don’t have a 24-hour circadian rhythm, also known as not having a 24-hour biological clock. In case of my little sister, she has a cycle of about 27 hours. Not sticking to this cycle will lead to problems, especially noteworthy is sleep deprivation, but also things like hormone count and body temperature are impacted. However, sticking to the cycle can be similarly problematic. Many people with non-24 have excessive sleeping patterns (although most often explained by their longer circadian rhythm), it’s like my little sister usually sleeps between 14 and 16 hours. Think for a moment about having to go to school at 8 in the morning and needing to sleep 16 hours beforehand. You would need to sleep at 4 in the afternoon of the previous day. But seeing as she has a 27-hour day cycle, it would shift around 3 hours on a daily basis. So even if she would be able to sleep at 4 in the afternoon one day, she would sleep at 7 in the evening the next if she kept to her circadian rhythm. Add those 3 hours also for going to school and she would be 3 hours late. And this goes on every day, until she finally reaches a short asymptomatic period, after which it all continues once more. She’s lucky our school is willing to adjust to her condition so she is able to follow schooling in both a normal school and home-situational way. But as an older brother I do know I will need to help her once she is an adult. It’s unlikely she will ever be able to find any work due to her condition.
It’s expected non-24 has to do with light sensitivity, both hypo-sensitive and hyper-sensitive. The majority of those with non-24 are blind. And reportedly all sighted people with non-24 have conditions with sensory issues–meaning neurodevelopmental disorders, such as ADHD, autism spectrum disorders and social (pragmatic) communication disorder–or brain damage. There are even rare cases of combined non-24 and delayed sleep phase disorder, another circadian rhythm disorder, in which people are supersensitive to the effects of light. Normal light of a lamp is already enough to cause huge delays in their circadian rhythms. This is even worse than regular non-24 as these people are benefitted by being exposed to light as little as possible because they’re able to stick to a 24-hour circadian rhythm while doing so. This form is recognized in the DSM-5 as a form of delayed sleep phase disorder overlapping with non-24.
Coming back to the guy in the video, he shows that he does have a sleeping pattern that isn’t really the same a normal person. However, there are some hints that it can’t be non-24. For one, he tells how microsleeps are disturbing his sleep. This is weird as microsleep are similar to the absences that I have, which both usually take less than 30 seconds. This isn’t enough to effect your sleep. It seems he confuses this with what is known as micronaps, which are short naps for about 30 minutes in time and could obviously impact your sleep. The data of his sleeping even confirms that he is talking about naps and not microsleep. And he also rants about how he is supposedly oversensitive to light, as he cannot look at asphalt, windows and such when the sun is shining brightly upon it. I have to admit that I cannot either. But this isn’t what is meant by being sensitive to light in regards to non-24. The sensitive of light with non-24 has to do with how your brain processes light. And this isn’t confirmed by asking you whether you can look directly to the sun or anything like that, but is confirmed by testing the melatonin levels over a day of time. If you’re under or over-sensitive to light, you would see melatonin levels being too low or too high at certain times of the day. That’s why you need to visit a neurologist to be diagnosed with a circadian rhythm disorder, as this requires actual tests that you cannot do yourself.
Although many of the self-dxers claim it’s their right to self-diagnose, they often are unaware of how much harm they factually do. Beside of the harm they could do to themselves by taking the wrong medications, as an example. There’s also how they affect others who do have what they claim to have. Think of how people could share misinformation about something serious like depression or PTSD. Mental health disorders are always serious, they aren’t something to play with. And worst of all is the fact that professionals themselves have a hard time diagnosing people. I cannot deny that I didn’t receive the support I really needed until I finally received the ADHD-I (attention deficit hyperactivity disorder predominantly inattentive) diagnosis. But getting diagnosed with something that you don’t have is probably even worse. As I remember a doctor saying: while checking your symptoms on WebMD, many people would assume they have cancer. And that’s something I can speak at with experience: you don’t want to have cancer. Hence it’s best to let yourself be diagnosed by professionals. And if you have doubts, you are always allowed to get a second opinion. It’s like my DNA is tested currently to make sure I don’t have a genetic disorder. Both of my younger brothers do have genetic conditions but we are not related by blood.
But maybe the problem of self-dxers is that there’s kind of the belief that we all need to have something. And some things just sound better than others. It’s like how my dad told about a self-dxing friend of his that is professionally diagnosed with schizophrenia but still has the idea he has autism, just because of autism being seen as less negative than schizophrenia. We have become too focused on the conditions as a society, even though they are supposed to be there for mental health professionals to help people with their struggles, not to be judged over. Besides, what are we judging over regardless? It’s like the ADHD in my personal situation means that I have mostly problems when it comes to concentrating. Why would this make me any more or less? I would say the good part is how I am able to be honest about my struggles and get support to not affect others negatively by it. We all have struggles, there is no reason to look down upon others over theirs.
This brings us back to the start, while also making this post end. If we want better situations in regards to mental health, we need to get away from all the stigma. We should be open to talk and listen. We should understand not everyone is the same. And accept that seeking support is a natural thing to do. Not everyone has benefit of being together, not everyone lives by society’s standards. This is all just fine. It’s all about live and let live. We should focus upon ourselves and our own struggles. Improve ourselves and help others. Not condemn others for not living to our standards. At the end of the day, you’re only responsible for your own actions.
- Гурт Мелодія – Я молюся за тебе, моя Україно [English Subtitles] - October 23, 2022
- What’s truly been happening and why we’re going on hiatus - August 15, 2022
- A look into my life: mental health - June 21, 2022
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