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!

Uk and NZ are way behind the eightball with this type of thing. Yes it is a thing, but the powers that be are evasive because if they proclaim it’s a “thing” then they’ll have to fund it.

@Helix1244

Last year I found a Suncream lotion which is in a spray bottle and goes on like water - life changer!

Thanks again all. I think this is so helpful. Regarding my saying everyone is on the spectrum, this was said to me years ago by a friend who is an SLD teacher, who said that's why it's called a spectrum! I think it was meant to be an inclusive statement, but if it now seen as offensive, I will certainly stop using it.

SPD does not have a medical diagnosis. It is a series of manifestations very closely linked with autism. Whether there is or is not a formal diagnosis is actually irrelevant. There is no 'treatment' in that it cannot be 'cured' but it's more a case of understanding an individual's sensory issues and helping them manage those.
Giving something a label can be very unhelpful as for many people it implies that there is something 'wrong'.

Why are posters trying to push autism onto this child? You don’t need to be autistic to have sensory issues. You can have SPD on its own and it can overlap other conditions.My dd is dyspraxic and ticked very high on the SPD assessment. There was an attempt to push autism on her st school which was quite upsettung. Yes I get girls can be undiagnosed but I think pushing the label when you’re not qualified to do so is just as damaging. We have an child with autism in our family and a member of the family who is well qualified in the field. My dd sounds similar to the child in the op, she is not autistic.

We did all the OT things op. Go to your GP op and get a referral.

It must be a thing, as I have quite severe dyspraxia and sensory issues along with it. It's really hard to explain unless you've experienced it.
Clothes/shoes are a huge issue for me (although I have discovered men's clothes in a size small/extra small can be a lot more comfortable)
Eating is another issue. Can't have crunchy toast etc. texture is a massive problem, can't have anything strong tasting, and VERY bad at trying new food things which I tend to overreact to or point blank refuse to try
There are lots of other things that I can't think off the top of my head!

I think what the OP means about it not being a ‘thing’ is that it’s not generally recognised in the UK as a condition on it’s own, but rather a symptom of other conditions such as ASD.

DIFFERENTNAMEFORTHIS SPD is recognised when a person has many sensory issues that impact significantly in their lives. So what you are saying isn't strictly true. Something only becomes a disorder when it has a massive effect on everyday life.
Many child psychologists do believe that everyone is somewhere on the spectrum. Again, it's when the triad of impairments become significant enough to impact on a persons life that a formal diagnosis of ASD is usually made. That isn't negating the challenges someone with a diagnosis of ASD faces, nor is it offensive.
However, using the term 'autistic people' is very offensive to many people with autism.

People aren’t “pushing autism on to this child” - they are suggesting that the OP has her child assessed for ASD as several issues she has mentioned warrant further investigation.

I have twin toddlers with ASD - they are 2.5, both diagnosed since their 2nd birthday, and I’ve already had people ask me why I’m allowing doctors to push labels on to my children. Unless you live with this you simply cannot understand.

With one of the twins, I knew something was very wrong when he got to 18 months old and had a massive regression. I didn’t notice that the other twin was also autistic as it was far more gradually apparent, so many signs in retrospect but I just thought it was his personality developing.

Both of my twins have sensory issues, one much more so than the other, but he is constantly sensory seeking. It prevents him from focussing on anything and OT say they can’t do anything at his age and cognitive level. It’s so hard.

Soontobe60 - Oh you are so wrong its laughable. First of all its autistic people who tend to prefer the term "autistic people." Its parents and professionals who tend to like to say "person with autism", "ASD/ASC" and "on the spectrum."
Second of all "many child psychologists might believe we are all on the spectrum somewhere."
But they're dead wrong, as are you. Having traits doesn't make a person on the spectrum. Because a person can have a few traits but not come even close to meeting the triad of impairments.
As a previous poster said only autistic people are on the AUTISTIC Spectrum 😡
And it does negate the real challenges autistic people face, having our disability and the problems it causes reduced to a trite "oh, well we're all on the spectrum somewhere" 😡

Could she have a problem with the detergent that you use for washing clothes and bed linen?

It is quite common if she does. Several people in my family cannot wear something unless it is washed with a particular product for sensitive skin. I think they use Fairy non-bio washing powder....

I don't believe they have any other associated issues. I'm a bit more tolerant of different products but they have to be non-perfumed.

I have Autism. My DD shows traits, I believe she at least has SPD, possibly Autism too but if she is she is ‘high-functioning’ (her verbal communication skills developed as expected) so at 6, it’s probably too early too tell. I wasn’t diagnosed until my early 30s when I self-referred.

SPD is still a stand-alone diagnosis, it’s also very common to have Sensory-processing issues when you are Autistic (I do).

I would suggest you have a look at Tania Marshall’s information on ASD in girls preschool here and see if it fits with your DD. There’s also a Facebook page for Sensory-Processing Disorder - called Sensory Processing Disorder UK - there are many people there who’s children have had a stand alone diagnosis - where you may find support. I would suggest you ask for an appointment with the school SENCO - do the issues spill into school? With a view to getting an OT assessment for sensory issues to see if there’s anything they can do to help, that may also trigger other referrals for assessments if they feel ASD is possible.

many child psychologists might believe we are all on the spectrum somewhere

What tosh! My dd isn't a 'person with autism' . It's not an illness! She is autistic. It effects every part of her life.

childmind.org/article/sensory-processing-issues-explained/

Might be helpful

We are not all on the spectrum. Although it’s a spectrum, you have to be autistic to be on it.

You can have traits.

This comic is my favourite way of explaining why we’re not all on the spectrum. To be fair, we have ‘experts’ like Simon Baron-Cohen (note, I dislike the patronising so and so for his superior attitude) saying ‘We are all on the spectrum somewhere’. Everyone has autistic traits - things they can’t stand, liking certain things their way, but not everyone is on the spectrum. You are or you aren’t.

Agreed moomoo.
I’ve already been told off by eloquent, online-posting autistic people for referring to my autistic sons as disabled.

They’re completely non-verbal. We are having to try and teach them to use PECS. They don’t understand any words. They don’t recognise themselves in a mirror. They don’t notice when we leave or come back. They still drink from bottles. They don’t know when they’re weeing or pooing. They can’t get down stairs. They can’t use cutlery. One can’t play with toys or do any activity because he’s so in need of constant sensory stimulation. They take at least three hours to get to sleep.

They’re 2.5 FFS. They are disabled and our whole lives revolve around the support they need, which is fine but if one more person tells me that autism isn’t a problem, I’m going to lose my shit.

It's definitely a real issue - although getting a formal diagnosis of it is absolutely a pain in the UK. Can also run quite strongly along with dyspraxia/DCD as well as autistic-spectrum conditions. DD2 has diagnosed dyspraxia but is undersensitive to some types of stimuli and seeks a lot of sensory stimulation but is also oversensitive to other stimuli - which takes some bloody explaining to people who don't really want to have to understand (like her flipping teacher this year)!

Homefireburn1ng people are suggesting that OP might push for an ASD assessment.
If the features are part of autism it is vital that the autism is identified. Many autistic girls are missed because the focus is placed on one presenting feature e.g. anxiety, eating disorder, spd etc. and the central Neurolodevelopmental difference is missed.

@sinkgirl my dd is hf and doesnt think of herself as disabled even though she needs support in every area of her life and parenting her has left me on ads. So if one more person says 'we are all on the spectrum somewhere' I'm also gonna loose my shit!

sinkgirl personally I would describe myself as ‘having a disability’ but not ‘disabled’ because I am able to have a job, have lived independently (albeit with some family support), however because Autism is such a wide spectrum, I think it’s really an individual thing as to whether you’re disabled.

I agree with FaithInfinity and suggest you look into an OT assessment. Use the websites and links here to find an OT specialising in spd. Their assessment will give you information and help specifically tailored for your dd and will also signpost and contribute to the wider assessment process.
Good luck.

However, using the term 'autistic people' is very offensive to many people with autism

No what is offensive to me as an autistic person is you as a NT think you can dictate what i call myself

I'm not a person with anyithing i don't bring my autism with me. It is me. Its who i am, its how i process the world.

I'm very pleased for you thag in yoyr NT brain you need to put me down as quirky, or nerdy or a bit of introvert

I'm autistic as i am blue eyed, i'm autustic as i'm white.

We dont say person with deafness we say DEAF

we don't say person with blindness we say BLIND

We don't say person with Diabetitis we say DIABETIC

What is it about autism that makes NT need to inforce the twee 'person with'

if you look in to the autistic community you'll see we're actually quite proud to be who we are we've shortened our diagnosis to things like Autie and aspie.

You do not have to be autistic to have sensory processing difficulties.

My ds struggles with bathing, hair washing, nail cutting, eating (extremely restricted diet), toileting, certain sounds and noises, certain 'touches', clothes, understanding warmth and cold, smells....and other things that I can't even think of now! He is hypersensitive to some tings and hyposenstive to others. He seeks out certain smells and the feel of things, he responds to deep pressure and squeezing and swinging, he spins and bobs his head. He doesn't seem to feel pain - he crushed his finger in a fire door and didn't scream, they only realised when blood was pouring through his pocket, the nail had come off, but if you try to put a plaster on him or some cream, he will scream like he is being murdered.

He can't get any support from OT for his sensory issues (although CAMHS did a sensory profile with a list of recommendations) He doesn't have ASD (we think he probably does, but he had an assessment which said he had '...many autistic traits but did not fulfil criteria for a diagnosis')

My DS has had sensory issues from around 1 yr old, practically as soon as he could effectively communicate preferences. There have been intense periods (years) of difficulties with many every day tasks and situations impacted. Last year the community Pediatrics team agreed to put him on the pathway for an ASD assessment. I was surprised as only ever suspected SPD but understand why they would go down the wider diagnostic route.

They closed the current pathway and all children who had not already begun the assessment are now on hold for 12 months, when they will re-open under a new process. DS will be 8 by the time they start the assessment. Since the acknowledgement that there is enough going on beyond the scope of neuro-typical, it seems as though things have calmed down a lot.

DH is more supportive of my view now, I'm not just trying to 'put a label' on him. I think I understand triggers and transitions better, so maybe we are all just coping better. Not wishing to hijack the thread, could I ask if you think it's still worth pursuing the ASD assessment?

Life doesn't feel on the verge of crisis any more, not like it used to. Can a diagnosis be a hinderance in future? If we are able to help DS effectively manage with a few of our own adjustments.