AIBU to ask if Sensory Processing Disorder is really a thing?

[Vegematarian]

My 11 year old DD has always been really fussy about clothes and prefers to wear the same thing until it disintegrates. She wore her school skirt and shoes at weekends when she was tiny and won't let me wash things as it makes them 'itchy and smaller'. I have just managed to wash her bed clothes today as her bed was a pit and I knew it would lead to a massive meltdown when she went to bed. She shouted at me when she realised everything was clean! There are American websites and help groups but it doesn't seem to be a thing in the UK. She has worn the same vest for weeks now and also hates nail-cutting and haircuts. Not sure how much to force the matter as obviously don't want her to be bullied or get scrofulous skin disease!

This is only my opinion, but I suspect that the NHS does not recognise SPD in some areas, as a way of managing the OT budget, when children’s services have always been the Cinderella of the NHS and an easy target for budget cuts!

This is 100% true and is happening in many local authorities as well. I work in an Independent specialist ASD school where most children have SPD and we have a large team of OTs that treat it. This year several local authorities who have children placed with is have said they will no longer recognise SPD as a diagnosis and will remove it from their EHCPs (and with it the funding for OT and a school like ours.) Its not about whether they think it's a 'thing' or not - it's all a mo way saving exercise as LAs have a £300+ million deficit for SEN funding and can't afford it anymore.

@RaffertyFair Thank you. As I said, I was definitely a bit testy when I was posting as dd was still awake after her bath earlier this evening. As it is, she calmed at 11pm ish, finally falling asleep at 11.30pm. This is unusual these days, as she has melatonin to help her sleep, but as I said, it was time to change clothing and the only thing we can do is work through it.

@MontStMichel

differentnameforthis I really hope you can get some sleep now too. You are clearly an awesome mum!

I let him read your comment. He is 15 now and has begun to ‘own’ his diagnosis more. He is starting to feel more empowered. I think since meeting others with autism (apologies if my terminology is incorrect, I’m so used to using the terminology my son prefers!) when attending MS school he was bullied severely for being ‘different’ and has spent the best part of his life, trying to ‘fit in’ and hide his autism. His views and terminology might change with time.

I can certainly relate to that, I experienced a lot of bullying in school too (at all of them) and I spent a lot of time trying to "fit in and pretend to be normal." As I grew older I started to feel differently about it, because I realised people picked on me whether I tried to pretend to be normal or not. And eventually I came to the conclusion it wasn't worth the huge effort required, that I have to put on a act to get through social situations that can't be avoided, it sure as hell wasn't worth doing it in other situations.
As I've gotten older I care less about "looking normal" and I don't hide behaviours that I worked really hard to suppress when I was a teenager. Even though I know I stim in front of other people now, I don't feel self conscious about it, it makes me feel more self confident, if that makes any sense. I probably wasn't doing as good a job at pretending as I thought anyway, not if the insults I used to get were anything to go by.
I guess after a while you start to wonder for whose benefit you're putting the act on for, because it sure as hell didn't benefit me in any way.

As for views changing over time, that's possible. I wasn't diagnosed until after I left school but everyone was aware I had "issues." I was very sensitive about the whole thing and about anything that might mark me out as different. Which in hindsight is absurd, because it wasn't the extra help at school that made me stand out, it was me - just me being me. I'm a lot less self conscious about it now, about needing help.

My son describes to me using mental lists and scripts for every interaction outside of home. These are absolutely exhausting for him and lead to breakdowns. Does anyone else use lists/scripts of how to interact? How do you manage them? Can you reduce them?

I do this a lot, for practically every interaction, not just with people I don't know but with people I do know. I script everything in my head before it happens, and as you say it's exhausting. I don't even mean to script sometimes, it just happens, I think that happens when I'm anxious and I kind of get stuck in a loop rehearsing the same conversation or scenario over and over again. You can see the obvious flaw in scripting this way, namely that if anyone deviates from the expected script, I have no freaking clue what to do.

Sorry, none of that answers your questions about reducing them. I guess I wouldn't mind knowing how to do that myself.

SPD is a separate condition that used to be ascribed to ADHD, it is now believed they are separate conditions that can, but do not always, overlap. There are a lot informative websites, education yourself.

Educate

Thank you to the posters for suggestions of things to watch and comments. I’m sorry for the derail! Hopefully it is kind of relevant to the thread and others might be finding it useful too, then I won’t feel as bad for derail!

janmeyer that is exactly what my son does. He will not accept any support in school or anything which he feels make him look ‘different’. He attends a specialist school, 7 in a class etc, which helps a bit. He has OT input, however refuses any strategies, other than theraputty in 1:1, for his handwriting.

And yes, he has a script for each person too. Literally every last detail of ‘nt’ interaction. Remember to stand up straight, don’t lean on things, eye contact, show an interest in what they say, think of a reply, remember to stop talking, remember what’s been said, have I given even too many details, not enough, is the convo finished now and so and on and on!

His verbal processing is slow, which I think is a big part of relying so heavily on scripts. Do you have difficulties with audio processing too?

My son ‘manages’ the school day by trying to avoid interaction where he can and spending all his time at home, alone in his room. He is either sleeping for long periods or engaging in his special interests.

This usually translates to ‘outsiders’ as home is the problem 🙄 as I should make him practice his social skills!

His verbal processing is slow, which I think is a big part of relying so heavily on scripts. Do you have difficulties with audio processing too?

Yep, I have a lot of problems with that. You're right, that is connected to relying on scripts. Listening is so much work, and it doesn't help that I find it difficult to admit to people I've not heard or understood something. Of course it doesn't help that people aren't always that understanding about such things either, but that's a rant for another time. I think maybe by scripting and memorising responses it makes it easier to mask the fact that I'm not "hearing" all of the conversation.

When it comes to difficulties with auditory processing I wonder if people find it hard to understand when the person is very articulate yet still struggles to process information verbally.

My son ‘manages’ the school day by trying to avoid interaction where he can and spending all his time at home, alone in his room. He is either sleeping for long periods or engaging in his special interests.

That was pretty similiar to how I dealt with school too. I have to say when it comes to social interaction I think I'm my own worst enemy. Social interaction is exhausting for me anyway, but the over thinking and the constant scripting and preparing makes the exhaustion much worse. The problem is, I find it hard to envision being less anxious about socialising to the point where it's not needed.

@ RaffertyFair Thank you. That means a lot on days like this.

janmeyer thank you for sharing with me, very helpful x

Different name for this

Thanks. I forgot the 999 calls up to 3 times a week, the 6 years under CAMHS from age 4 - 10, and again age 17 - 18; and 4.5 years counselling in specialist schools.

As her third professor of neurology said

“She mixes with the BEST!”

@Claw01
I'm a bit late to the party, but if it's still of use to you I also heavily use scripts, though not quite to the extent of your DS. I can have a conversation without them, but if I'm making a phone call or meeting someone like a lecturer or GP receptionist (someone "up the chain" as I think of it) I have to know what I'm going to say first, I can usually carry on the conversation from there but that first few lines is always terrifying for me.
I doubt it will be any reassurance to him, but some of the things he has to think about are things a NT would never even notice like the leaning on things, my NT friends do that all the time.
If you'd like to talk a bit more about it feel free to PM me, I kind of have my own "terminology" that helps me think about it, but I don't know how much sense it makes to anyone else and explaining it would definitely count as a derail

DS (5yo) is constantly sensory seeking, with the exception of loud noises which send him into meltdown, and one or two other things he will obsessively avoid.

He runs into walls deliberately, will throw himself about on the floor/furniture. He had finger prick tests for his blood glucose when they queried diabetes due to his excessive drinking (I believe to be SPD related), and instead of getting upset with the pain,he asked the dr to do it on the other 9 fingers. He licks things he shouldn’t, eats spicy food you wouldn’t normally give to a 5yo.

As I’m typing he’s sitting watching a cartoon with his legs in the “w” position (knees bent outwards so his feet are next to his hips - something the OT said features with some with SPD). He’s constantly bruised as a result of his flinging himself about, and I’m sure it’s a matter of time before he winds up breaking something.

He confuses hot and cold all the time and prefers to be naked because that’s more sensory input for his skin - rags and seams do bother him if they’re not in the right place and he’ll scream and rip the clothes off. He can’t bear being kissed by anyone bar me (and even then timing is everything), and now will actively avoid certain relatives because they cannot grasp this and keep wanting goodbye kisses, despite him, and us, telling them. Then when he lashes out we’re expected to tell him off 🙄 - I now say “you were warned not to push for kisses”.

We’re still going through the asd assessment process, and not long had the OT input that identified SPD,so we’re still working out how best to deal with it all and help him. The hardest part for us has been getting family to understand how badly he is affected and how to help him with his needs. As far as they’re concerned, he’s in mainstream school so mustn’t be “that bad” 🙄 Frankly they know fuck all.

blueglassesframe thank you x