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!

Some occupational therapists are brilliant at working with it. Could you make a private appointment to see one and see what they suggest. It doesn't really matter what you call it: it's getting the help that's important.
My dn has this. He would literally bring the house down when he had to have hair cut as he couldn't bear anyone touching his head. Also can't bear any clothes up around his neck.
It's sometimes due to their birthing experience, l think.

Vegematarian what made you wonder about yourself?

They don't diagnose it in the UK yet.

But they provide courses to help you understand it and help the person(s) suffering with it.

I have it and so do my kids and one of.my parents.

Because of my eldest I was recently referred to this course through the occupational therapy department of the hospital.

It's worth pushing for an assessment with them.

It is definitely a thing. D's has lots of sensory issues. We have been told the do not diagnose spd in our area. There is also very limited support from OTs for sensory issues (if you can get an OT at all!)

Yes - it dominates my son's life. He had an O T assessment for it. It affects every bit of his life.

It sounds like she could use an autism assessment (ADOS) but you'll have to push hard to get one.

Only autistic people are on the autistic spectrum.

Or else there would be no need for a diagnosis....if eveyone had it to some degree.

Don't be fobbed off by GP and cahms. SPD is very real and debilitating.

Clankboing, yes it affects our lives very deeply too. All clean clothes have to be stretched and often ripped before wearing. She has long, sharp, dirty fingernails. She is very quiet at school but saves up her frustration for home and takes it out on me. Very draining and depressing.
Offallycheap, I have always had problems with friendships, oversharing, misjudging situations! If I get overloaded by sensory stimulation in social situations I have to escape and am sometimes ill the next day. I imagine my DD must have inherited some of those traits.

Unfortunately in our borough if you have an ASD diagnosis, you won’t get much help with SDP, or even a separate diagnosis. As it’s recognised as part of autism under DSM5, they feel they have dealt with it with an autism diagnosis. Very frustrating because it is so very real.

Mmm, ever such a lot of women realise that they are also on the spectrum when their child goes through the diagnostic process. It may be worth looking into for both of you. It may be that you look into it and discard it as not relevant, because nobody on the internet can give you a definitive answer, but worth considering.

If you look at it and think you may also be, then the Facebook group Mums on the Spectrum is extremely good and you don't need an official diagnosis to join.

Have a look at the notes from this lecture on SPD, given by Louise Williams, an OT to the SOS!SEN 15th anniversary conference:

www.sossen.org.uk/admin/resources/02.lw.pdf

Thanks, Samoture and all the carers going through similar! This has been a real eye-opener for me.

I know we're all on the spectrum somewhere

No, we are absolutely not. It's offensive to suggest that everyone has any medically diagnosable condition. We don't all have diabetes or arthritis, why assume (without knowing what it really is) that we all have autism?

The diagnostic criteria are "autism spectrum disorder [is defined] as “persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests” (this includes sensory behaviour), present since early childhood, to the extent that these “limit and impair everyday functioning

For Sensory Processing info, have a look at this.
www.falkirk.gov.uk/services/social-care/disabilities/docs/young-people/Making%20Sense%20of%20Sensory%20Behaviour.pdf?v=201507131117

The beginnings of recognition of Sensory Processing "Sensory Integration and the Child" by A. Jean Ayers

a more modern approach "The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder" by Carol Kranowitz

Jean Ayres is the OT who first put forward a theory of sensory integration. There is a very good book, the out of sync child which is well worth reading, carol kranowitz.
Some professionals believe its part of other developmental co-ordination disorders, ASD being one of them. Others believe its a stand alone disorder which is misdiagnosed. Whatever the over arching facts or diagnosis, it can impact on every area of development and ability to engage in day to day life and activities. An OT specialising in sensory integration can be a big help but hard to find.
Your local asd support groups could really help you with this OP irrespective of whatever is underlying. All the best and happy to be PM'd any time

Cross post with blanktimes 😳

Thank you all - lots to read and investigate. Sad that there doesn't seem to be a joined-up strategy for dealing with what sounds like a not uncommon situation.

Totally a thing! My ds was diagnosed 4 years ago in a private assessment, which we had to do because he isn't on the spectrum at all, so the school didn't recognise it. He is at secondary now, and he is much better at coping strategies, but it is difficult because it isn't a recognised disorder, so he doesn't receive any accomodations.

Definitely a thing, I can't stand certain fabrics or tight clothes. There's only a few people I'll let touch me, only two I'll let touch my hair, sometimes even the colour of something can affect how it feels (for instance I had a red shawl and a pink shawl, exactly the same but I loved the feel of the pink one and couldn't stand the red one). Some noises I freak out about, like if a noise is disorganised (for example in a restaurant with lots of people talking at once or if someone's whispering and I can't quite hear it, freaks me out). If I'm stressed my brain can't process speech so I have to ask things to be repeated over and over, I have no hand eye coordination and very poor balance. I'm sure there are other things that bug me, but it really does affect my whole life.

Yes, it's definitely is a thing, as part of the broader diagnosis of Autistic Spectrum Condition. You might read a fair bit about Asperger, now part of autism, as it is nothing like the simple stereotypes people know of. You may not relate to it yet, but if your DD has ASC, it might affect her socially and in turn emotionally, and in turn would affect her learning in later years. So you really want to get the ball rolling with the Paediatrician. Keeping a diary of everyday behaviours and events could help. You might see the pattern and show to the GP as evidence for the referral.

It’s a thing!

DS has a diagnosis of high functioning autism, but we still had to get a diagnosis of SPD through a private, sensory integration specialist OT for his particular sensory issues to be taken seriously and accommodated for in his EHCP.

He has issues around clothing, food, noise and touch.

It sounds as if she has autistic traits, and it can often be overlooked in girls. It is worth pushing for an assessment.

Great minds noodledoodler
Useful info is much better repeated than not posted at all.
As an aside, it's quite surprising in all sorts of forums where two people have the same info and cross-post.

The NHS used to diagnose SPD, I don't know why it's not done any more. My relative was dxd with it as a child 16 years ago by a brilliant Paediatric Sensory OT when it went by the ghastly name of Sensory Integration Dysfunction. Then it changed name to Sensory Integration Disorder, then I think Sensory Processing Deficit, deficit was definitely used for a time as I thought that was quite ghastly as well, Sensory Processing Disorder seems to be widely used now.

No, we are absolutely not. It's offensive to suggest thateveryonehas any medically diagnosable condition. We don't all have diabetes or arthritis, why assume (without knowing what it really is) that we all have autism?

^ this with bloody knobs on. I really really hate this "oh well we're all on the spectrum aren't we guv" understanding of autism. Autism is a develmental neurological condition. People with autism aren't just a little quirky, they're brains have devoloped in a different way. It is a medical condition, and life long. Your not on the spectum cos ypu have a mild interest in something nerdy or you aren't partically interested in beimg social.

I'll also adress why some one said it was quite offensive to ask wether SPD was a "thing" again because its a diagnosiable medical condition. Neither SPD or Autism are "things" as in "oh i think i'm a bit quirky i'm going to give myself a label and tell everyone i have it". They are medical conditions that are very very complicated.

Sorry, i actually see why people are a bit upset by your wording.

Hope your GP listens to you about your daughter.

Agree with the railing against "We're all on the spectrum" comments. Yes you might like order and find small talk uncomfortable but it really isn't autism. I don't eat chocolate. I'm not diabetic.

SPD is definitely a thing. Unfortunately it isn't recognized as stand alone disorder, so recognition isn't what it should be. Drs/paed etc won't diagnose it! Without it's inclusion into the DSM-5, it's just seen as a "symptom" of autism etc by many

My daughter struggles massively, and her paed will/can only diagnose "severe sensory difficulties" yet her OT KNOWS she has severe SPD

She wears nothing but plain leggings and plain t shirts (and they have to be boys - because they don't have the stupid ruffles/cap sleeves etc that girl's t shirts have), even at school and probably will always wear that. She also wears them as pajamas for bed.

My daughter also hates showers, as she cannot stand the way the water feels when it hits her skin, so she has baths, and to be honest, even that is hit and miss because the water makes her skin itch!

TBH, it’s a lot more involved than sensitivity to clothes, though that can be one symptom. To be fair, it depends on the severity of the condition, not the amount of symptoms.

Also, let's not confuse sensory sensitivities (can't tolerate tags/seems) with sensory processing disorder. They are not the same. SPD is debilitating.

@Vegematarian I know we're all on the spectrum somewhere NO! We are not. That's is actually a very offensive thing to say, and goes to diminish the struggle that autistic people face. Please do not say that again!!