Published on 12, July, 2020
Hello, my name is Steven and I am 15 and have asperger syndrome. I am here because I am having sense problems but am not sure what is causing them.
one day about october or november in 2015 I woke up and my left eye felt weird. A few days before I got a sensation that my left ear lost some hearing and sometimes still get that sensation. My peripheral vision felt sensitive and bright lights and vivid colours in my left peripheral vision would be annoying. This would also cause the area around my eye and left cheek to have a painful kind of pins and needles.(the kind of pain autistics get when they are sensitive to light touch). My actual eye doesn't hurt though. This problem has not gone away although now I get periods for a few days where the eye problem almost disappears completely but comes back again. if i hold my eye socket and left cheek this problem lessens a lot. so maybe it is a nerve/muscle issue. Now very rarely this switches to my right eye and my left eye becomes normal. So it affects one eye at a time. Anyway a few months ago I realised I started getting that same pins and needles sensation all over my face, neck and shoulders, but not usually below that. And light touch against my face and neck now leaves a painful tingling that I have to brush away. However the painful tingling around my left eye can not be brushed away. I realise a lot of autistics have problems where light touch leaves a tingling. A couple weeks back, tinnitus started in my left ear(ringing in ear) which I would rate mild but it got close to moderate at one phase. I also sometimes get tingling in my left ear too now. I have no idea if these are caused by autism. But lets go back to october before this started. I was at school playing football and i got kicked in the head. I didn't get knocked out or anything but I got kicked nonetheless.Anyway I went back to the changing rooms and started to get a vertigo/panic attack sensation. Ever since then at school I would get these sensations. They would normally start after stopping suddenly after doing exercise or they would start in class if i thought about them. I could normally control them but have had to go to the medical room a few times. This rarely happens at home though I still sometimes get these sensations. So I am wondering if these are caused by a brain/nerve injury? Anyway the only anxiety I had at school really was worrying about losing football matches. Now that I have left school I feel more anxious and depressed. One day I felt really depressed, and then the problem switched to my right eye soon after so this could be linked to anxiety. I am really worried about this. What if they start affecting more senses or they get severe? The only sense problem that is linked to autism is the tingling. I realise autistics might have light sensitivity but how can that only affect one eye? And why in the peripheral vision? And why does my actual eye not hurt? Or might I have a brain tumour or something affecting me? there are 3 causes i think it might be. 1. a brain tumour 2.anxiety/depression and 3. just side affects of autism. But if it is autism then how come I haven't had these my whole life? I never really even had sensory problems. Is it possible for sensory problems to start later in life? I spoke to an asperger once and he told me he has this eye thing and that it will soon develop in the other eye but maybe he misunderstood me. This post was long but I am really worried. Someone help please. PS I have been to the doctor about the eye problems and the optician and everything came back normal apart from slight short sightedness. Please don't post 'go to the doctor' because I haven't written this long post for someone to give me a generic answer like that. I am not asking you to be a medical expert but am asking for guidance on whether this is caused by autism or what else it could be so I can suggest it to my doctor when I go.
'I currently have tinnitus which for me is a practically constant high-pitched whistling in my head (I hear it but it doesn't seem like it is coming from my ears if you see what I mean). It is loud enough that I have just asked to be referred for hearing checks. I believe that this is stress related - I resigned from a job recently and am struggling to get another job.'
Did you have this your whole life? And would you classify this is as a sensory issue? or rather just a hearing disturbance?
'I am sensitive to touching hot things. I can't pick up hot dishes like other people.'
I find it easy to pick up hot things if I know they are hot. Or I normally drop them in a surprise. I think this is simple survival instinct.
'If I don't put up blackout curtains then I get woken by the sunrise at 5 in the morning.'
I don't really get woken up easily by the sun because sometimes I sleep through the day. Sometimes I wake up early and go back to sleep. This happens whether or not the sun is up. What I find especially during hay fever season is the sunlight aggravates my symptoms. At night it is not usually bad but in the morning I find the sun makes the dust affect me more. Also I am hesitant opening my eye(usually the left one) first thing in the morning because of the visual problem and I feel like the morning light makes it worse. I don't know whether you would classify this is photophobia but one day i actually walked with my eyes closed until I was away from the window so i didn't have to look at the sunlight.
'Sometimes I get extra sensitive hearing so that going into a coffee shop becomes very unpleasant - the noise of the espresso machines can seem unbearably loud. This seems to come and go and I have not really found what triggers this.'
I don't think I have had this. I might have in the past but I don't recall it so I'll say no I don't have it. But if it is a sensory problem then why does it come and go?
'I hate it when a fire engine goes past with its siren going. The noise seems unbearable but I know that it won't last and sometimes I cover my ears.'
Everyone hates those sounds including me. Does it break you down or overwhelm you? I don't really have a problem with them apart from hating loud noises just like everyone else.
'I can get very distracted by people talking near me at work so I use noise cancelling headphones and listen to music whilst working. The headphones reduce the intrusive sounds enough to let me concentrate.'
This only distracts me if I am interested in the conversation. But it is probably because of ADHD as I get distracted by things that interest me. If I am not interested, I normally just zone everything else out.
'I have had visual disturbances sometimes that I think are like migraines - they never developed into real migraines (i.e. crippling headaches, nausea etc) so I never went to the doctor about that.'
Can you please go into more detail about the visual disturbances and describe how they feel to you in great detail?
'Other issues I have are problems recognising people - I noticed over the years that I get confused between people and I cannot follow films unless there are only a couple of main characters. (this is known as prosapognosia and some people are completely blind to faces.'
No I don't think i have experienced this, but speaking of TV, I have this problem I noticed last sumer where when characters are talking to eachother I can't register what they say and I have to repeat everything they say in my head. Most of the time I can't keep up and keep having to rewind. This problem usually happens when watching on demand tv or videos where I know I can rewind. When watching normal TV my brain seems to register thing automatically but not every single word. So it could just be an obsession to understand every single word or it could be a processing issue, I don't know. I find this issue doesn't affect me as much when there is a single person talking into the camera. Just mainly when they are decribing something or talking to someone else.
'I'm also prone to fainting out cold if people talk about operations and such. I used to be really bad but have been mainly cured by going through the experience of falling off my bike and breaking my leg. I ended up having two operations and found it to be nothing like as bad as I imagined.'
I don't experience fainting when subjects are talked about although recently I have had an issue where standing up causes slight faintness and holding my breath while standing up makes me black out and nearly faint and then makes my head tingle. I also have breathlessness and panic like symptoms sometimes(similar to the ones I described happened in school) and heart palpitations. I don't know if this is related to fainting but they could be related.
'Some foods can make me have a bad night's sleep and can disturb me for a few days so I am avoiding curry (I never liked hot curries in any case) and a few things like apples and tomatoes - I have a slight intolerance which I think is called pollen fruit syndrome - there are theories that your diet can affect autism but the evidence for this is not great at the moment.'
Eating a curry results in an explosive episode on the toilet for pretty much everyone. That's normal. About the diet, yes I have heard it is all in the gut and GAPS diet can fix this. I am starting to believe this since it would explain autism sensory problems starting later if my gut got worse. I also had a lot of bowel problems and diarrhea as an infant. Scientists how found a drug that prunes the brain of excess of synapses by reducing levels of a molecule in the immune system. Apparently normal healthy kids brains get rid of excess synapes but autistics don't and their brain is a cluster basically. This explains why autism isn't apparent as a baby because all babies have the same number of synapes but as the kid grows to adulthood the difference of synapses compared to normal kids grows and so the autism becomes more apparent. They tested the drug on rats and it worked. But apparently they have deemed the drug unfit for human use because it causes symptoms of diabetes,asthma, and heart problems. This REALLY REALLY angered me because autism is worse than all these combined plus these diseases can be treated and controlled individually but that is not the case with autism. I am going to see if I can aquire this medicine in 'other manners' but recently I have been taking vitamin supplements that studies have found reduce the severity of autistical behaviours in some individuals. Although I have stopped those recently because I have diarrhea.