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!

Food* not good.

FWIW with the identity first thing I’m not too keen. I don’t get offended but I’d much rather be referred to as person with bipolar not bipolar person. It does not define me and I identify as a person, not as bipolar

My son would say he is a person with autism. His logic he is human being, first and foremost. His Autism is only a part of who he is and doesn’t define him. I think he has reclaimed the term

See i totally get your sons logic claw and often think that way myself as in it defines me about as much as being a red head or blue eyed does. And i'm very much a human being first. However, its so much of my daily life, my ablity to access the world. Maybe i'm a person who is aitistic. That way ots not externalised in the same way the person with autism feels and it accepts that its very much part of me but it it acknowledges that i'm a person first.
Although all that ramble i think i'm much happier with i'm autistic/i'm an aitistic person.

I love the picture you've found on FB claw

Other than that theres so much here i agree with from jan and differentnameforthis

Ime, they don’t cherry pick symptoms in adults and say you have x, so we will only treat the main presenting symptom and ignore the rest?

Yeah, sadly they do.

What was mentioned about not recognising SPD individually so they don’t have to treat it goes for heaps of other illnesses.

For example hypothyroidism: 95% of the population with a healthy thyroid have a TSH level below 2.5, which is why most countries offer treatment above this level. In the U.K., they won’t diagnose until your TSH reaches 10. That massively reduces the number of people they need to treat, and who gives a shit how much those people (mostly women) suffer until things deteriorate to that point.

Then there’s endometriosis- can only be diagnosed via surgery. So if we don’t do the surgery, you don’t have it (it’s like Schrodingers gynae disorder).

Sorry, this is way off on a tangent, but unfortunately this is the way the NHS saves lots of money on a population-wide level. It is infuriating and while on the one hand I’m deeply relieved that I don’t have to pay for mine or my children’s medical care, I also know that I and my children would be able to access far more if we lived elsewhere.

FWIW with the identity first thing I’m not too keen. I don’t get offended but I’d much rather be referred to as person with bipolar not bipolar person. It does not define me and I identify as a person, not as bipolar

I see your point about bipolar, but I think it's different with autistic and autism. Because "autistic" just another adjective, it's no different to saying a person is white for example.

See i totally get your sons logic claw and often think that way myself as in it defines me about as much as being a red head or blue eyed does. And i'm very much a human being first. However, its so much of my daily life, my ablity to access the world

I understand the logic too, I just can't agree with it. Because for me autism does define me, it's the lense through which everything else is interpreted and filtered. My obsessions (and that is the right word, what I'm obsessed with at the moment has gone way beyond a mere special interest) are so all consuming that they dominate every single aspect of my life, so by extension autism does. But of course that's not the same for everyone who's autistic.

See jan thats exactly how i feel. My autism is so much of me. Its why i know what i know, and yep my "special interests" my life too. It also dominates how much i can cope with the NT world, i find it very difficult to sit next to people on the bus. If some one sits in tje empty seat next to me i have to move and sit in tje next empty seat where theirs a space, i stim, i stim quite a lot actually, it shows my excitement, my frustration, its often my calming mechinism. If the NT world is overwhelming me you'll often find me counting my fingers (just to make sure i still have 4 and a thumb) everything i do i know its because of my autism So yeah i'm autistic rather than a person witb autism

But i'm also a person. And a the whole everyone is a bit autistic ah your just a werido. No i'm an autustic person. I guess thats why i like claws picture i describe myself as ginger, its a way of describing me, (although it doesnt define ne personality wise) i describe myself as white, (again doesnt really affect my personality) i describe myself as british -irish (that can affect my view of the world through my culture)

Isnt it funny how NT are happy to be defined by things that dont define them such as hair colour, eye colour etc but are so keen to tell people thsy can't use words that describe things that do define us. They have to tell us to use words "with autism"

My autism defines me more than your colour of your hair but your happy to say your blonde/black haired/ginger but i'm nog allowed to say i'm autistic okkkkk then

I find that SPD is fast becoming the "new" Autism/OCD. As in the "we are all a little bit..." way.

I think it is best to separate sensory issues/preferences from sensory processing disorder. Sensory processing disorder is debilitating.

It's not not liking your hands to be wet or dirty, it's having a feeling of pain communicated to your brain when you are wet or dirty.

My daughter cannot shower because it is physically painful for her. The last time she had a shower (out of necessity) she was in there less than a minute and she shut down, she's 10 and I had to hold her up and wash her.

She goes barefoot most of the time because socks (sensory ones at that) and shoes cause her to have a pain response. We are in Australia, so our pavements get bloody hot. But that is easier for her than socks and shoes

I can't touch my daughter unless I ask, so she can prepare herself for the way it makes her feel when someone touches her.

She can go days without changing clothing. She sleeps in her day clothes, and then wears them at school the next day. Changing into clothes everyday causes huge meltdowns. There is no way around this yet.

She had a bath at 6pm tonight, so it is clothing changing night. It's 10pm now, she still isn't dressed and is now refusing to dress until she can have her old clothes back. They are wet on the line. I am on here because I am at the end of my tether, and we both need a break. So I am a bit testy too.

She wears black or navy blue leggings and boy's tshirts, because girls have capped sleeves and frilly bits that she cannot tolerate. Other clothing has buttons, zips, embroidery, hoods, transfers, seems, tags that can all be felt by her and give her a pain response. She can feel buttons and zips through 2 layers of clothing. She is my modern day princess and the pea.

Her friend and myself have sensory preferences in that we don't like tags in our clothing, however, with them cut out, I can wear anything, and her friend most clothing! This is NOT the SPD that my daughter experiences.

So please. Let's not fall into the same trap with sensory issues as we do with OCD and autism. Sensory preferences are NOT sensory processing disorder.

Yes it is, my dd 12 has ASD, and SPD. She is so sensitive to having her hair brushed and kicks and screams when i try to do it, so I keep it in a short graduated bob. She hates eggs and smelly food, as the 'smell makes her sick', and does not like food with slimy texture like melon or mango.

janmeyer that’s a really interesting point. I think for my son there is still a certain amount of stigma attached.

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.

There’s a spd Facebook page. www.thesensoryspectrum.com/breakthrough-study-reveals-biological-basis-for-sensory-processing-disorders-in-kids/?utm_campaign=meetedgar&utm_medium=social&utm_source=meetedgar.com

I can't touch my daughter unless I ask, so she can prepare herself for the way it makes her feel when someone touches her. Further to that,

Imagine not being able to plant a random kiss on your child's face, give them a huge bear hug spontaneously, not being able to toss their hair.

Not being able to touch her when she meltsdown because that touch actually makes it worse. Sitting on her bedroom floor watching her screaming and crying and not being able to scoop her up as it will just last longer and become more intense. Words are also useless, she shuts everything out, so she can't be reached. So I just sit, holding in tears because then at least she knows I am there!

Then she will climb on my lap, usually naked because her clothes "feel like fire" when she is like this and shut off. And the only reason she can bear to be in my lap is because her body has stopped feeling anything because she has shut down.

As soon as she starts to come back, she starts to scratch at herself and leaps off me.

Fucking kills me every time. That is my daughter with sensory processing disorder. This is her tonight. And now I have to go back in. And it will start all over again.

Claw01 it sounds like your ds has had a tough time which sadly is not uncommon. But I'm sure you give him loads of positive and I hope things continue to improve for him.

My dd embraced her autism diagnosis because it gave her an understanding of why her life was so different and so difficult. But again, like many girls, she did not get that diagnosis until she was 9 and had already broken down completely from the stress of (unknowingly) being autistic in a NT world.

The person first or second issue is significant affected by the syntax of the english language. Adjectives come before the noun. So, my dd is a young, autistic woman and I am a middle aged neurotypical woman. In French the word femme would come first, and descriptors after.

There are some very knowledgeable people on this thread. Could I ask some questions please?

But sadly even in French I'd still be middle-aged

@Claw01 Happy to help if I can...

Ds has a diagnosis of ASD and, for example, recently threw up with pain because he had an eyelash in his eye.
DD does not have a diagnosis of anything but lives her life by a whole set of rules. Can't wear that it's too crunchy/stretchy/creasy. Can't eat that it's too smelly/chewy/crunchy/sloppy. I strongly suspect she is indeed also on the spectrum somewhere as she has all sorts of traits of autism but no one else is interested in assessing her because she's gone through 2 initial assessments and managed to pass for normal because she can do that 90% of the time. I imagine if she ever got to go through her wardrobe with a psychologist and explain her rules about crease vs stretch ratio, rate her tights by acceptable seam width and/or discuss the effects of line drying on various fabrics - well then she'd get a diagnosis of ASD with SPD.

Sensory preferences are NOT sensory processing disorder.

I understand completely what you are saying differentnameforthis but it is also important to acknowledge that spd will be different for each individual.
I wouldn't want people to think that because their experiences / challenges dont match exactly the desperately distressing experiences of your dd, that doesn't mean they dont have spd. (I hope that makes sense?)

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?

The only thing which works at the moment is ds spending a few weeks at home recovering. Then back to school and whole thing starts again.

Claw, Chris Packham describes having lists like that in a BBC programme he made about autism - he was able to articulate it very well.

@Claw01 I can't speak for my daughter, but three of my adult autistic friends certainly admit to using mental scripts/lists.

One also has to write out anything she is going to say before she makes a phone call, and have an answer prepared for almost every comment the other person it likely to say. She rarely communicates on the phone, preferring emails.

She communicates effortlessly with me, because I have no expectations/pressure but admits that she often struggles with others who do not know her well, even her parents at times.

Her husband has lists for everything, even household chores.

I have to leave lists for my dh (not dx autistic, but dd's psych thinks it's highly likely) when I am not here, with regards to our dd, and it is things he does with her everyday when I am here. Because if I am not here, his routine has changed and so he doesn't correlate the normal tasks he would usually do for her when I am home

For example, if I am out late, he will forget to put her to bed. Because he sets her bedtime by what is happening in the house (not by time), and if that is different, he loses the task from his "list" completely because his normal "triggers" are not there! So I leave a white board with step by step instructions.

Yet when I am here, he is spot on with her bedtime 9/10 times.

I don't know if it changes to be honest, hopefully someone with more personal knowledge can help, but I do recognize the need to recover before starting all over again!

Thanks Ive googled the title, I will see if it’s available to watch later

@RaffertyFair
I am not saying that my dd's experience is the only valid experience of SPD, but am asking for others to understand that SPD is more than not liking a seam or a tag or dirt on your hands.

I would never tell anyone that their experience is wrong, but just like wanting to make sure your lights are turned off is not the same as relentlessly switching them on and off and on and off and on and off and on and off and on and off and on and off etc, not liking dirty hands is not the same as the dirt causing a physical pain response within your body.

I hate being caught out in the rain. There is nothing worse for me than wearing wet clothing, however, that is not the same as clothing feeling like fire against my skin. One is a sensory preference that is annoying an can be avoided, the other a disorder that cannot be avoided at any cost.

In real life, some people have severe difficulties and this makes it very difficult to do most things that society expects.

Most of us have some difficulties with some aspects, but can either avoid the difficult bits or learn ways to compensate, and can lead almost normal lives.

Problems arise when we assume that most people can manage everything easily. Many pupils have some difficulties but they are not a major issue as long as teachers can accommodate their need to do things their way. The same is true at work - if you expect that all your employees can easily manage everything that you find easy, you are likely to be disappointed.

Often, when I have mentioned that I find something difficult- like remembering multiple computer passwords without writing them down, I find that most people have the same problem. The expectation has been set at a ridiculously high level that only people with exceptionally good memory can attain. We need to be more tolerant when people can't remember, need things written down rather than spoken over the phone, need triggers to remind us to complete tasks etc etc. Then maybe we will also cope better with the more severely impacted people.

Can i also recommend 1800 seconds on autism podcast on bbc sounds

differentnameforthis my post was not a criticism, I was just pointing it out for others reading the thread

My experience is not limited at all - but I was thinking of physical health at the time! DD1 has been under 3 professors of neurology, consultant neuro-psychiatrist, consultant psychiatrist, consultant gynaecologist, consultant neuro-surgeons, consultant endocrinologist, speech therapist, OT, speech therapist, physiotherapist, clinical psychologist, social workers (part of the Behaviour Support Team), epilepsy nurses who are also either mental health nurses or learning disabilities nurses; and consultant paediatrician (under 18). She was often under 3 hospitals at once! I told the GP once, when she was under 3 consultant neurologists, I was lost and did not know who did what - she said she was as lost as I was!

DD2 has BPD, ADD, OCD, social anxiety (or GAD), selective mutism (at school) and at times depression.....25 incidents of suicidal behaviour that I know of!