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!

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.

I was quoting someone else when I said that, but I guess that wasn't clear. Anyway my point was pretty much the same as yours. And that's exactly why I hate the term "person with autism". Because it makes it sound like it's something seperate to the person, rather than an integral part of them. I mean that's kind of the defintion of pervasive developmental disorder, that it affects everything. Whereas the term "person with autism" makes it sound like an optional extra, some weird little quirks that can be switched off whenever they annoy the NTs.

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

I just wanted to say SinkGirl that not all autistic adults think that way, and not all of us would lecture a parent about saying such things. Because that's exactly what autism is, a disability. I don't really see why people get offended by that, I mean if autism wasn't a disability then why would a person even have a diagnosis?
It's a very frustrating topic, even more so when you have autistic people who are very able lecturing everyone else about how "you shouldn't see yourself as disabled."
Ugh, some people even think it's like the next step in human evolution, some kind of human 2.0.
I just wanted to say though that just because an autistic person is posting online and is as you put it "eloquent" that doesn't mean they are functional in day to day life. It just really ticks me off that people assume because an autistic adult posts online that you are a) verbal b) that articulate in real life and c) a fully functional independent adult - yeah, I wish.

It’s really interesting reading this as I’ve heard very little about SPD. DS was diagnosed with SPD and dyspraxia last year when he was 12 and up till then i’d never heard of SPD. The diagnosis explained so many things that I had just assumed were DS’s ‘quirks’; extreme reactions to sudden noises, to smells, to temperature, hair cutting, nail cutting etc. We also really struggle with suntan lotion and at nearly 13 I still have to apply it and last week he refused swimming which he really loves because he had to wear a vertical sock and hated the rubber against his skin.

Helix1244 for suntan lotion try either the one with the roller ball or apply it to your hands first rather than directly to the skin.

Oh yes, I’m sorry if I was unclear. I understand that for many autistic people it is neither debilitating or a disability, which is fantastic and gives me hope for my childrens’ future lives. What angers me is when people state that my clearly disabled children are not disabled - if it were any other condition causing their individual issues, there’d be no issue calling them disabled. By saying that my children are disabled because they are autistic, that doesn’t mean that I am saying that autism is always a disability, if that makes any sense.

I am trying to be the best advocate for my children - I don’t know how they’ll choose to identify because they don’t yet talk or have any concept of what autism is, or even any concept of being a person as far as I can tell. If that changes, I will respect their choices entirely, but until that time I will label them as disabled children who need intensive additional support in order to develop.

It's a very frustrating topic, even more so when you have autistic people who are very able lecturing everyone else about how "you shouldn't see yourself as disabled."
Ugh, some people even think it's like the next step in human evolution, some kind of human 2.0. angry
I just wanted to say though that just because an autistic person is posting online and is as you put it "eloquent" that doesn't mean they are functional in day to day life. It just really ticks me off that people assume because an autistic adult posts online that you are a) verbal b) that articulate in real life and c) a fully functional independent adult - yeah, I wish.

I completely agree with you - it is frustrating when very able people police your use of terminology, but I also agree that being eloquent and able to post online doesn’t mean they don’t have other difficulties. I’m sorry if that’s what my comment implied, it was unintended. It’s more that I find it frustrating because my children can’t even recognise a single word, and it seems a real possibility to me that they’ll never be able to make their voice heard in any online discussion about autism, but I will do my best to make sure they can, and be their voice if they can’t.

NaughtToThreeSadOnions
I completely agree you should be able to call yourself what you want.
What is it about autism that makes NT need to inforce the twee 'person with'
People do say "person with Downs Syndrome"...or "Sarah has Phelan McDermid Syndrome" and people do say "Frank has diabetes".

Definitely a thing. My friend, who is autistic has it.

People do say "person with Downs Syndrome"...or "Sarah has Phelan McDermid Syndrome" and people do say "Frank has diabetes

On the diabetic one most people don't - diabetic is most common. "Are you diabetic?" "I can't have cake i'm diabetic" "it sounds like you might be diabetic"

I suspect however, its you've unwitingly hit the nail on the head with the having down syndrome. Because, and i do understand why, Downs child, or that person is downs is offensive. So NT's think that autistic is offensive. No its what we call ourselves. And as other posters have pointed out it rather suggests that its an optianal extra we can switch off when we annoy you NT'S to much. In fact is that it? Does it make you all feel better? You can't cope with it being part of us so you have to make yourselves feel more comfortable with our behaviours by making it something external to us you can chose when our autism affects you?

even more so when you have autistic people who are very able lecturing everyone else about how "you shouldn't see yourself as disabled

I'm autistic, very able, but very very much disabled. You can't see my disablity. But there is so much i can't do. It limits my life.

just really ticks me off that people assume because an autistic adult posts online that you are a) verbal b) that articulate in real life and c) a fully functional independent adult - yeah, I wish.

Again this with knobs on times 1,000,000 i wish i was.

I am not being confrontational, Naught. I have a son with a genetic condition, it is very much part of who he is, it literally runs through his DNA. At the moment, as he is young, I advocate for him and help him learn to use his voice and learn about his condition. As he gets older he will advocate for himself as much as is possible.

The language is tricksy, someone may say, "I have learning disabilities"...."I have Noonan Syndrome"....these aren't "optional extras" things that can be "switched off". I don't think that if some one says, "Bob has autism" it means they think Bob can switch his autism on or off.

havey not all of my post was directed at you.

Thats why there was a seperation between the two things.

Pretty much the only bit that was directed at you was the bit about diabetic and has dibetitis.

The rest about it NT wanting it to ve switched off was a more general thing about, NT, irl and on here, that in my experience rather patronisling say "with autism" autistic is offensive. And do actually hate the idea that autism isnt something that can be switched off. I've encountered it many many times. I've even been told to stop being autistic because its "embarressing" and then when the NT has wanted consessions or whatever has very clearly and tbh quite loudly decared 'i'm a carer for some ons with autism' (sm if you or your daughter are reading you've never cared for me in your entire damn life) (see hazey i don't think your my stepmother)

Its not about the language so much as the attitude that goes with the language hazey

@TattiePants

You can now get a suntan lotion that sprays like water - my daughter much presets that rather than the cream.

toomany which sun cream is that? We struggle to get it on DS2 - full on “I’m being murdered!” screeching here.

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

He does correct people who use ‘high functioning’. “please don’t refer to me as ‘high functioning’, there is no such thing! I have AUTISM, not a little bit, not a lot, it’s not about intelligence, a spectrum isn’t a line from better to worse, it’s about how autism affects me”

I completely agree with you - it is frustrating when very able people police your use of terminology, but I also agree that being eloquent and able to post online doesn’t mean they don’t have other difficulties. I’m sorry if that’s what my comment implied, it was unintended.

No, your post didn't imply that. It just reminded me of other people who don't just imply that, they state it outright. I've gotten into arguments with parents of autistic kids before because according to them being able to post online means a person can't possibly be disabled, that being able to do that automatically makes a person "high functioning" which of course some people take to mean mildly autistic and not at all impaired. Like I said it's a very frustrating topic to discuss. It doesn't help that I have a tendency to rant about these things, and that doesn't always go down well with other people.
But some of the wording used on this thread has been like a red rag to a bull. Reading/hearing people use phrases like "we're all on the spectrum" somewhere is guaranteed to get me ranting.

You can't cope with it being part of us so you have to make yourselves feel more comfortable with our behaviours by making it something external to us you can chose when our autism affects you?

I wish I had written that part myself, damn, I wish I could put into words why I like that sentence so much. I feel like you've articulated something that's really important, important enough for me to save your post and add it to my autism quotes list anyway

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!

If there is no such condition, that immediately cuts down the number of parents clamouring for OT! Ditto saying it’s just a part of autism; and CAMHS saying they don’t treat anxiety in children with ASD!

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? DH has coronary artery disease - nobody gave him a stent, and said you are sorted now! They gave him statins and aspirin for life; and a proton pump inhibitor to cut down the damage aspirin might do to his stomach. He also gets cardiac rehab - lectures on diet, stress and exercise!

@Soontobe60 There is no need to shout at me in order to address me. The @ before my name would have alerted me to your post.

Just because Many child psychologists do believe that everyone is somewhere on the spectrum. doesn't mean they are right. Again, saying so IS offensive because NT people (and I include myself and my other daughter in that) DO NOT struggle in the way autistic people do. In order to be autistic you have to have that triad of impairments. Not one, not two, all THREE.

It is NOT when those impairments become significant to affect life that it becomes a diagnosis. It is when you have ALL THREE of those impairments. These days they label the severity of those impairments as Lvl 1 through 3. And believe me, all THREE levels affect life significantly! In a way that being NT doesn't.

And yes, it does negate their struggles.

However, using the term 'autistic people' is very offensive to many people with autism A lot of autistic people prefer autistic, rather than "person with autism". Look up "actually autistic."

My daughter doesn't "have autism" in the same she has a cold, or a scrapped knee! Autism is part of who she is, and will always be.

To say that all of us struggle to the degree that autistic people IS offensive to me, and many many autistic people I know.

Uk and NZ are way behind the eightball with this type of thing And Australia!

@Homefireburn1ng Diagnosis, not label.

My sons SPD was diagnosed alongside his autism.

I know we're all on the spectrum somewhere.

No we are fucking not

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.

You either meet the criteria or you don’t. If you don’t it doesn’t make you a little bit autistic or somewhere on the spectrum.

To say that all of us struggle to the degree that autistic people IS offensive to me, and many many autistic people I know.

Just wanted to say I agree with every single word of your post.

When it comes to the "we're all on the spectrum somewhere" crap I remember a really valid point someone else made on another forum. The comparison they made was all people know what it's like to sit in a chair, right? But that doesn't mean we all know what it's like to be in and use a wheelchair. And no right thinking person would think they do, because that's patently absurd.
So why then do people think they can do the same with autism? That because they might struggle to pick up on humour for example, or they like routine and all things orderly, that it means they know what it's like to be autistic. It makes me really mad that they reduce the disability that prevents me (and other people) from being a functional adult to being a bit weird and socially awkward.
I don't know what it is about the autistic spectrum that makes people think they can identify into it just by having a few quirks or being a little socially awkward.

I don't know what it is about the autistic spectrum that makes people think they can identify into it just by having a few quirks or being a little socially awkward.

It’s the same with depression and OCD! How often do people say “I’m depressed!” when actually they are a bit down! Or, they like to keep their desk tidy, and they say “I’m a bit OCD”, when that is nothing like the impact of OCD on life!

Just saw this on FB.

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?

Then your experience is very limited. In mental health that's exactly what they do. Not only that, they'll use that one label to actively block you from getting help for anything else. Look at all the women who are misdiagnosed with BPD and then refused any other diagnostic assessment or support as a result.

I’m sure there is a website that sells clothes that are specially made to be non irritating. I’ll have a google and try and find it for you.

My son has it but is slowly getting better. Pretty sure I have it too I don’t like being wet at all. Hate swimming and I can’t lay in the bath for long at all. I dry my hair immediately and I hate having anything on my hands like wet, glue, paint, mud, dirt, good anything!