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Ichigo Kurosaki

SPD/OCD and a weird experience (Sorry, I think I might have put it in the wrong section)

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Sorry, I think I might have put this thread in the wrong section before, I hope this is the right place, :unsure: . My mind couldn't settle until I was sure it was in the right place, :unsure: .

 

My SPD and OCD affect my life in so many different ways, half the time I can’t work out the difference between them. They coincide with each other all the time. I sometimes wonder that if OCD is tackled then the chances are my SPD would only recreate new OCD traits in a different form.

 

Food is one of the hardest subjects for my SPD. I am vegetarian because of my SPD, it took time but eventually in McDonalds, I kept trying the burgers, and slowly over time I got more and more uncomfortable with the feeling of the texture, focusing on the texture made me think of cows, and well you can guess the rest, :unsure:. My SPD can make me very picky with foods, it annoys mum something terrible, and me, but I can’t help it. Most fruit I cannot stand, for example I find bananas, plums, grapes and oranges too fleshy, pears to be too grainy, raspberries too hairy, pomegranates, most melons, kiwi and strawberries to be too bitter. With vegetables if I see a brown mark on them then I cannot eat them. Mushrooms look a lot like fleshy overgrowths and some can really smell bad. I hate it, it makes choices of what to eat extremely few, I have a very small choice of foods, :unsure:. When it comes to food, it has to look right, smell right, feel right on my tongue, and taste right, if it doesn’t pass all of that, I am unable to eat it. I have tried apples, they are reasonable, the only problem is that it is difficult to get used to the fact that it changes colour so quickly. I have also tried watermelon, that is a little better, I have gotten used swallowing the seeds along with it, and the fleshiness of it is not too bad, the look of it does kind of remind me of steak though, which is disconcerting since I am vegetarian. I have tried smoothies but I have to gulp it down as I don’t like the feeling of the fruit bits on my tongue. Tomatoes by themselves are very bitter. Food is an extremely difficult subject due to my SPD, argh, it’s annoying, :unsure:. It is hard for everyone around me, including myself to deal with, but it is part of my SPD. That I can’t run away from. I want to try recipes to try other foods other than, tomato soup, soft rolls, breakfast muffins, pasta and pizza, but the problem is our kitchen is so very small and chaotic, making it claustrophobic, that it can be draining cooking in there, :unsure:. I feel I need to add a lot of spices to most dishes to increase the flavour of the foods, which also includes breakfast muffins. There have been several occasions in my past when I was much younger there was a dinner put in front of me to eat in amongst other children, the same happened once during primary school. I just stared at it and tears started to well as I knew I couldn’t eat it, but I didn’t want to make the situation awkward, as that is often the case if you can’t eat the food. It was horrible when I was asked to eat the food prepared for me but I couldn’t eat it, I didn’t want to be ungrateful at all, but I had no control over it. I also remember when I was younger and used to eat meals that my Oma (grandma in German) prepared; I had to eat them on separate plates. That was a clear sign of SPD, but mum and I didn’t know it at the time. What gets me the most is that I want to eat healthily but my SPD is preventing me. All I can do is take vitamins for vegetarians.

 

That is not all. Being sensitive to touch is another major difficulty to my SPD, I get a tingly uncomfortable feeling whenever someone touches my arms and I cannot shake people’s hands. The smell of metal in my hands from coins, door handles, and such creates a real irony smell in my hands which is irritating, thankfully I have found a strategy to tackle this and light touch. If someone was to accidently touch me or I had that irony smell what I do is wash my hands, it gets rid of the feeling and the smell in one fell swoop. If I need to open a door, I tend to use my t-shirt to cover the door handle. If I travel I take a hand gel so that I can use that instead of washing my hands, it is also much quicker. That is why I am never sure if it is my OCD affecting me here or SPD. For everyday tasks I find cotton gloves have helped me. To me, it cuts off the direct contact to surfaces and makes it easier to do various tasks like making a cup of coffee. I can’t hold most knives, forks or spoons unless I wrap them in tissue. I even have my own selection of knives, forks, and spoons to combat the problem to some degree.

 

At night I feel I must bring a torch out with me to check the floor as I hate to step on slugs, snails, and everything slimy or gooey. If I did I can hear the noise it makes, the feeling it creates and my mind will not settle until my shoes are cleaned. It is awful. I don’t know how else to tackle this other than with a torch.

 

Sight is more focused on my OCD, I think, but to be honest, I have no idea. I am not worried over sleeping because of my eyes at all; it is not like that at all. What I have the problem with which is why this is perplexing me is that if I see the slightest stain or hair on any surface, be it mug, plate, bowl, sink, bath, anything that I could have direct contact with, I need to wash it to get rid of it. I cannot use it otherwise. That has got to be my OCD surely. I keep seeing crossovers between my SPD and OCD that I cannot easily tell the difference.

 

Smells do affect me as well. I like the smell of fresh bread, coffee, candles, and even washing powder. When I go to the supermarket the aisles containing those items can get quite overpowering. I have a lot of air fresheners around so that I can combat the bad smells around the house.

 

I can hear much better than my mum. I can hear a phone ring upstairs from downstairs in the living room at times; it is not a major issue to my SPD though. What is a major issue with my hearing side of SPD has got to be loud noises. My family sometimes have an unfortunate habit of raising their voices when tensions become high. I find this horrible, and it makes me feel worse, the best thing I think that was invented for this is earphones. I just plug them in turn my music up and it cuts it off. That has been my strategy for tackling this problem.

 

Something has also perplexed me about my SPD. I am not sure if this is because of my SPD or AS but I have noticed that I can sense my family’s moods. Personally, whenever I sense someone is feeling bad I can tell, it is either that I sense the awkwardness of the situation, can sense their tone of voice, see their reaction, like sinking into a chair and covering their face. I immediately feel extremely uncomfortable; conflict is something that makes me feel really awkward about. I tend to feel bad if they feel bad, I guess it is like a mirror image.

 

I have noticed something very strange that only happened once a while back. I got up one morning walked to the window then I suddenly got this picture in my head of a cat with an exaggerated scared expression. A few seconds later I heard a dog bark from far away and then a couple of seconds later I noticed a cat cry. I found that weird, I have never experienced that before. It shocked me and I didn’t know what to think. I am not sure what it is. Is it my SPD, AS or what?

 

So the questions I ask are: Where does my SPD affect me and where does OCD? Also, has anyone found any strategies to tackle some of these SPD or OCD traits? And what happened when I got that pre-emotional reaction from the cat before it occurred?

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Hi Ichigo Kurusaki

 

A very interesting story but as I don't personally have SPD, I cannot speak from first-hand experience. But I picked up in Para 8 about the hearing side. This condition is called hyperacusis which is basically oversensitivity to loud sounds. I find if I'm stressed, overtired or been in a noisy place for too long, I get acoustic sensory overload and I just have to go and find a quiet room and either plug my ears or like you, put headphones on and listen to something quiet and calming. Usually though, I prefer complete silence. I am a professional with ears so know a thing or two...

 

There are ways to treat hyperacusis. The main emphasis is retraining the brain in how it perceives and processes sound and this can include white noise or music therapy.

 

Can't help with the rest I'm afraid...

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Hi robert7111a, I have never heard of hyperacusis, but thank you, I’ll do some research and see what I can find. I don’t know if it is related to stress levels in me as I hadn’t really thought about it. I tend to listen to music I am interested in; it tends to drown out the sounds with pleasant ones. I didn’t realise it could be separate from sensory processing disorder. I forgot to mention, when it comes to people chewing food, or sucking fingers, the sound always intensifies to me and that plays on the hearing and the touch difficulties I have. How would white noise and music therapy help?

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Sally44   

My son is on medication for the OCD fears about contamination and germs [sertraline]. And for the SPD he has a Sensory Integration Programme with an Occupational Therapist. He also has listening therapy which is supposed to help with the sensory system. There are things you can do to help your SPD, which an OT could advise you on.

 

As you say, I think the SPD and the OCD cross over alot. But I think the difference is probably that SPD is about what you 'experience' or 'process', whereas the OCD part is how you react to that eg. having to wash, wipe, wear gloves, etc and that it is a 'compulsion' ie. not something you can reason yourself out of. It is something you MUST do otherwise you never recover from it.

 

Do you have any associated fears about getting ill, injured or dying, or of family members getting ill etc if you don't complete the compulsions? IE. If you didn't carry out the compulsions, what is your brain saying will happen to you?

Edited by Sally44

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My son is on medication for the OCD fears about contamination and germs [sertraline]. And for the SPD he has a Sensory Integration Programme with an Occupational Therapist. He also has listening therapy which is supposed to help with the sensory system. There are things you can do to help your SPD, which an OT could advise you on.

 

Sally44

 

Thank you for your reply, :).

 

Personally, I am not on medication to sort out my OCD, but in some senses, I get very conscious over the long term effects and side effects that might occur in taking them. So, I get very indecisive over it, as I don’t want to risk a chance of getting something worse to try to alleviate the OCD.

 

When it comes to SPD, I haven’t actually been diagnosed as such; however, when I was 14 I had a professional assessment by an Occupational Therapist (OT) and I know that there are many elements within that assessment report that touch on many issues to do with SPD. The OT suggested I have therapy once a week but, although I had a statement of special educational needs, the Local Authority said that they wouldn’t pay for the weekly therapy, and unfortunately my mum, being a single parent, wasn’t able to afford to get the therapy privately. We think that as a consequence of that I may have suffered in the process. The more I see myself and the way I am towards touch sensations and such the more I can make a connection with SPD. I am 21 years old; my mum asks doesn’t OTs mainly only treat those up to 19?

 

As you say, I think the SPD and the OCD cross over alot. But I think the difference is probably that SPD is about what you 'experience' or 'process', whereas the OCD part is how you react to that eg. having to wash, wipe, wear gloves, etc and that it is a 'compulsion' ie. not something you can reason yourself out of. It is something you MUST do otherwise you never recover from it.

 

I have noticed my OCD affecting me in that if I feel I said or thought something offensive in any way, even in the slightest possible way, I feel I must whisper under my breath; “Excuse my language, or thoughts, I didn’t mean it, I’m sorry”, because inside I fear that if I don’t I may be looked upon unfavourable.

 

I am also very conscious over how I save Microsoft Word documents, I feel that I have to click the save button several times to confirm that I have saved it, as I get overly conscious over whether I may miss the save button and think I saved it but didn’t and I could lose the file.

 

My mum has noticed sometimes in the past that I have had these nervous twitches, sometimes I don’t really notice that I do them as they are second nature to me, but sometimes I have a couple of anxiety ticks, one where I blink if my anxiety is high and another where I have noticed that I cringe; basically squeeze my hands together, or jaw in a certain way when I get high levels of anxiety or when I get excited. I don’t know if this is SPD, OCD, or AS in general though.

 

Do you have any associated fears about getting ill, injured or dying, or of family members getting ill etc if you don't complete the compulsions? IE. If you didn't carry out the compulsions, what is your brain saying will happen to you?

 

Well, I don’t really feel to the extreme of people will die, get injured etc. but I do feel that if I don’t wear the cotton gloves then I will be exposing my heightened senses to each service I touch. It does happen and therefore I wear the gloves to prevent it.

 

When I travel outside in the dark, I feel I must bring a torch with me in case I step on a slug or snail, and I do not want that to happen. I notice the squishing noise, and the feeling of stepping on one, and I cringe and I don’t want to experience that again, and so, I take precautions with a torch.

 

When it comes to washing hands, I can constantly feel the sensation of the touch, it irritates me, and I know that washing my hands alleviates that feeling, and so I feel that I must wash the affected area as quickly as possible, or else, I won’t be able to touch that area again until I do. There have been times where I have pushed my hands away from me and kept them away from my face until I get to a hand gel or wash my hands. If the area that I touched, thing, object, or whatever that I have touched is really bad, like, I accidently brushed my hand against a spider or fly or something gruesome, I feel I must wash my hands about three or four times to alleviate it, and mask the feeling and smell. I also cannot lift the toilet seat without a tissue as I don’t want my hand to come into contact with the toilet.

 

If one of my family members sucks their fingers, and I hear it and see it, or puts bare feet or legs somewhere I may come into contact with, then I cringe and my anxiety rises and I start getting agitated and can get a bit angry sometimes.

 

I suppose they are compulsions, but in another way they are also precautionary measures as well. I don’t know what to think, it is not necessarily about germs as such, though in some cases it might be, it is more the feeling than anything else, either the prevention of or the counter for them.

 

As for me whispering to myself, well I suppose that could be my OCD, but as for the cringing, I’m not sure.

 

Best wishes

Ichigo

Edited by Ichigo Kurosaki

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Sally44   

I'm no professional, but I think your behaviours are more SPD, with anxiety about certain things. But I don't think you've necessarily got full blown OCD because when you have OCD it is like there is an extremely abusive partner living in your head that is nagging and threatening you ALL THE TIME to do things otherwise x, y or z will happen to you or your friends/family. It is like your brain has taken you hostage, and you cannot resist what they are making you do. It is not at all enjoyable and very upsetting and frightening.

 

My son cannot touch his shoes, or let his feet touch the floor. He cannot touch door handles, or walk on ground where there is the possibility that any animal may have wee'd or poo'd on that ground. His first thing when returning from school is to get into the bath, and he is in there for hours, and after the bath he has to have a 'final rinse' shower to rinse off any germs he may have washed off into the bath water. then he has to get out the bath in a certain ritualistic way, and positions bath mats and towels so that he can get to his bedroom without contaminating himself again. And if he makes one mistake he has to go through it all again. And his anxiety level if really off the screen. He is absolutely terrified, hence the medication. Which as you say may have side effects, but thankfully we have not seen any. But without the medication I think he would have to be hosptialised.

 

And if a fly gets in the house, or lands on anything, he practically faints with fear, and everything has to be cleaned.

 

So I don't want to belittle what you experience. But I think the intensity of it is not what is experienced with OCD. Although OCD can happen to anyone.

 

Sensory Processing Disorder is for life. The question about treatment up to age 19 is probably relating to your Statement. Because a Statement is up to age 19. Local Authorities often refuse to pay for OT input, especially sensory integration therapy because the NHS does not fund it. But it is a recognised condition, and some children [including my son] have got this therapy included on the Statement, but it was delivered via my son being at a special independent ASD specific school for children with around average cognitive ability. It took two tribunals, and alot of money to achieve that. So it is outside of the reach of many parents - although I would always advise parents to go to a Tribunal whether they have all the evidence or not because a SEN Tribunal can Order an LA to provide what the child needs, and it does not cost anything to go to Tribunal. It is when you have to pay for independent assessments/reports and ask those independent professionals to attend the tribunal as your expert witness. That is what costs the money.

 

As an adult I still think you could be seen by the Community OT. You would need referring to them. They should be able to give you a sensory diet, which if you can follow, may over time help you to become less sensitive to things. Or you maybe able to get some independent OT advice about how you could help with your sensory processing disorder.

 

For OCD, I would recommend that you have a look at www.ocduk.org website as that has some useful information on the condition.

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Sally44

 

Thank you for your reply, :), and sorry for my late reply, :(.

 

I'm no professional, but I think your behaviours are more SPD, with anxiety about certain things. But I don't think you've necessarily got full blown OCD because when you have OCD it is like there is an extremely abusive partner living in your head that is nagging and threatening you ALL THE TIME to do things otherwise x, y or z will happen to you or your friends/family. It is like your brain has taken you hostage, and you cannot resist what they are making you do. It is not at all enjoyable and very upsetting and frightening.

 

Yes, I think I mainly display SPD, and I have heard that SPD can show OCD-like traits, I can’t confirm though if I just have SPD, as I am not a professional either, :unsure:, then again with most “professionals” over here, I wonder how many are actually trained in ASD, :unsure:. I was diagnosed with OCD in the beginning, though I definitely think that the SPD is by far stronger.

 

I swear when it comes to OCD my oma (grandma in German) has it in heaps and bounds, :lol:. In the beginning, she flat out denied it, but as time has gone on we think she began to see that she might, but I think it is touch and go, :unsure:. Oma said that when she was young, her mother, my great oma, saw how she and her sister cleaned the kitchen floor, but when she saw it, she said it was unclean and tipped dirty water on the floor and asked them to redo it, as she said that it wasn’t as clean as she thought it should be. My oma isn’t as bad as that, but I think that she probably got it from her mother but in a slightly smaller form. She is so precise with everything from the curtains, to her bed sheets, to checking the taps are turned off, she is also so concerned about how clean things are, like her net curtains. She is also worried over where those across the road can see her and are spying on her. Time, position, cleanliness and such all play a big part for her.

 

I am not THAT bad with OCD, :unsure:, it is definitely at a lower amount than SPD. I’ve probably got more of the hoarder side of OCD than anything, :unsure:; my room is always cluttered with lots of games and books and such, :unsure:. I do fret over touching and treading on things, but I think it is a fear of the textures and such than anything else. As for the toilet, well, I think that could be a heavy mixture of SPD and OCD.

 

My son cannot touch his shoes, or let his feet touch the floor. He cannot touch door handles, or walk on ground where there is the possibility that any animal may have wee'd or poo'd on that ground. His first thing when returning from school is to get into the bath, and he is in there for hours, and after the bath he has to have a 'final rinse' shower to rinse off any germs he may have washed off into the bath water. then he has to get out the bath in a certain ritualistic way, and positions bath mats and towels so that he can get to his bedroom without contaminating himself again. And if he makes one mistake he has to go through it all again. And his anxiety level if really off the screen. He is absolutely terrified, hence the medication. Which as you say may have side effects, but thankfully we have not seen any. But without the medication I think he would have to be hosptialised.

 

And if a fly gets in the house, or lands on anything, he practically faints with fear, and everything has to be cleaned.

 

Sorry, when I explained my difficulties with SPD and OCD, I never mentioned all of it, :unsure:.

 

I can understand your son’s worries with touching shoes, but I can touch my shoes, just not the underneath of them.

 

I don’t worry about my bare feet touching the floor, but I do worry if other people do so, :unsure:, so I can certainly understand where he’s coming from.

 

I can’t touch door handles either, the only door handle I might be able to touch, at a push, would be my bedroom door, for everything else, I use my t-shirt, :unsure:. I prefer wearing long sleeved t-shirts as it makes grabbing a hold of door handles a lot easier, and can act as a guard against the accidental brush against skin.

 

I can understand why your son wouldn’t want to go anywhere near where a dog may have wee’d or poo’d. I tend to get a little iffy when I approach a lamp post and such, :unsure:, so I can understand where he’s coming from.

 

As I said, I take a torch out when it is dark to spot out for anything slimy, that goes for snails, slugs and dog poo.

 

As for baths, don’t get me started about that, ah, I used to remember screaming in the bathroom when I had a bath when I was young, due to my hair being washed and the feeling of soapy water dripping over my eye lids. My mum thought that other people must have thought that someone was being murdered, :unsure:. My mum had to buy a special ringed head guard so that the water wouldn’t go into my eyes when my hair was being washed. As time went on I started to hate baths more and more, until eventually I changed to showers. I always need to have an old sheet on the bottom of the bath before I have a shower in the bath, if not, then I can’t go in there. I have always checked the bottom of the bath to make sure it is clean; no hairs and such, I have had arguments with mum over me checking how clean and clear it is. It was only a few years ago that I built up the courage to try washing my hair without a guard of some kind, now that doesn’t bother me as much as it used to. Baths were and now showers are not easy things for me at all. I can’t even go in my family’s baths/showers, as it is somewhere where other people have washed in, ah, I get worried over ours enough, never mind about other peoples, :unsure:. My worry with baths or showers doesn’t come from germs on me, more the condition of the bath/shower itself, but I can understand where it came from for him. I can also understand not wanting to touch the floor until your son gets to his bedroom, lol, I can see where it came from, though I am not as bad as that. I do have my own towels separate from the hand towels in the bathroom so that I don’t have to dry my hands or face with something other people have used, I keep them in my bedroom so that no one else sees them to make sure they don’t use them.

 

I do go over some things over again, but not to that extent, more things like saving my document several times more than necessary and whispering under my breath to avoid disfavour.

 

Yes, I can understand with the seriousness of your son’s condition then medication is definitely a good thing to keep it under control. As for myself, I am always so indecisive, :unsure:, I am also very cautious over everything too. I think I need a lot of confirmation first before I make a decision.

 

Yeah, about a fly landing on something in the house, yes, I’m not as bad as that. I do understand where he’s coming from though.

 

So I don't want to belittle what you experience. But I think the intensity of it is not what is experienced with OCD. Although OCD can happen to anyone.

 

Yeah, I have noticed the dominance of the SPD, and yes, I can see that your son is affected much more with OCD. I think I knew that my OCD wasn’t that severe, but I think when it comes to things such as the toilet, or stepping on slugs, snails, or in dog poo, it could be heavily in both OCD and SPD. I strongly feel the need to wash my shoes if I trod on snails, slugs, or on dog poo. I also have a certain ritual about the toilet as well. So, I think there is a greater influence of SPD but when it involves certain areas the OCD tends to get a lot bigger.

 

Sensory Processing Disorder is for life. The question about treatment up to age 19 is probably relating to your Statement. Because a Statement is up to age 19. Local Authorities often refuse to pay for OT input, especially sensory integration therapy because the NHS does not fund it. But it is a recognised condition, and some children [including my son] have got this therapy included on the Statement, but it was delivered via my son being at a special independent ASD specific school for children with around average cognitive ability. It took two tribunals, and alot of money to achieve that. So it is outside of the reach of many parents - although I would always advise parents to go to a Tribunal whether they have all the evidence or not because a SEN Tribunal can Order an LA to provide what the child needs, and it does not cost anything to go to Tribunal. It is when you have to pay for independent assessments/reports and ask those independent professionals to attend the tribunal as your expert witness. That is what costs the money.

 

My mum had gone to a tribunal and IPSEA had paid for two independent assessments, one by an educational psychologist and another by an OT who said I should have sessions every week, but as I said before the LA would not pay. The IPSEA representative wanted to call a consultant psychiatrist as a witness to demonstrate that the psychological elements of my autism would affect my education. He refused to attend. It also appeared to my mum that the judge at the tribunal had an issue with the IPSEA representative. In other words, my case was at a disadvantage because of this representative. My mum wasn’t aware that you could have another tribunal at the time. Also, my mum was looking after my oma, who just had a triple bypass operation at the time. Things were very difficult and very hard.

 

She really had no independent support, and to be honest that has continued no matter how much she has fought. My mum and I had two supposed independent advocates who promised the earth, but just before my statement ended, along with my education, one of them came to my mum and told her that she was being paid by the LA to shut her up, and both advocates disappeared without fulfilling their promises. My mum has made two complaints over the lack of support I was given and neither of them were addressed. Also the professionals never listen to mum, :unsure:.

 

I completely understand where you’re coming from; it is disgusting that we have to pay out such large sums of money to prove the truth. It is reasons such as this that I wonder how in the world an individual with ASD would cope, :unsure:.

 

As an adult I still think you could be seen by the Community OT. You would need referring to them. They should be able to give you a sensory diet, which if you can follow, may over time help you to become less sensitive to things. Or you maybe able to get some independent OT advice about how you could help with your sensory processing disorder.

 

Thank you, my mum and I will try pursuing that, :); however, we do have problems where we live as the LA is not cooperative with my mum. I very rarely see a GP as I have difficulties with that. The surgery itself is also not very understanding or supportive and the GPs keep leaving and changing. Neither my mum nor I seem to be able to build up an understanding relationship with a GP as they keep leaving. They’re very young and have no interest in ASD, and it’s difficult to switch to other surgeries. From what we hear, the other surgeries are no different.

 

For OCD, I would recommend that you have a look at www.ocduk.org website as that has some useful information on the condition.

 

Thank you for telling me about the website about OCD, I shall look it up to find out more, :).

 

I hope your son is coping alright with his OCD, I can understand why he is having such difficulty. Although I am not affected as bad in OCD, as it is my SPD that I think takes dominance, I can still see where he’s coming from.

 

Best wishes

Ichigo

Edited by Ichigo Kurosaki

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