Sensory processing disorder?

[pucca]

Is this a recognised diagnosis? as you read conflicting things, some sites say it is (mainly OT sites or American sites) others say its another word for other problems.

I also read something they are trying to get sensory issues added into the assessment for ASD etc... For example SPD + language delay could mean the child is ASD.

Any thoughts on this?

my DD was diagnosed with SPD when she was 7, but to be honest, i didnt really understand what it meant

Now that she is older, and i have more knowledge i can see the link. She did have quite a language delay as a youngster, and had various input from SALT. She still has communication difficulties, and is waiting on assessment for ASD.

But, i think a lot of professionals dont seem to recognise it in its own right, which makes for a confusing diagnosis IYSWIM.

(sorry if that didnt make much sense, i am illing)

Jetcat...Thats what i mean, is it taken seriously? its a confusing one isn't it?

I also read that it is linked heavily with ASD.

justabout - DD has dyspraxia, and her consultant actually stated that there were a lot of crossover points - hence the massive delay in her assessment i think. They have got the dyspraxia dx, and dont seem to be in any hurry for anything else

Dyspraxia is coordination problems isn't it?

My ds is ok with fine and gross motor etc, he is delayed in every other way though. He has got GDD, and now OT has said SPD.

yup, co-ordination mainly, though consultant thinks that maybe her communication problems (very very slow speaker, lots of pauses, repetition etc) maybe part of that, or could be ASD - i think it depends on what kind of day he is having She does have other ASD traits as well though, i think as she is now 13, we will be very lucky to ever get a definitive dx for her

Not so much of an issue for me really, but its hard trying to work with school, as they are saying "well, if she has this then we could do that" - or "if she has that, then we can do this" - when in reality, she is kind of somewhere in between. I sent a letter in today with her though, asking about an IEP, so we shall see!

DId the SPD come as a shock, or were you kind of expecting it?

Jetcat...Sorry my last post came across quite blunt, i was replying to Justabout.

I understand a little how you feel, you just want some sort of answer don't you? then you can face it head on and help as much as possible as you know then what you are dealing with.

What other ASD traits does your dd have? does she not have any funding in school to help her?

It wasn't a huge shock tbh, ended up paying privately for a OT to see ds, and alot of it made so much sense. He is on sensory overload all the time, he eats odd things, smells every morsel of food before eating, will retch at smell of others food, he hates wearing clothes, smears, he spins and jumps off everything...the list is endless really. The problem is, is the pre-school he attends is pretty rubbish and they report that he is sociable, the OT observed him yesterday there and said he seems sociable but he doesn't communicate with others he just mimicks them and tags along. His speech is terrible! he has lots of routines etc too.

So all in all i am at a bit of a loss, and getting no-where really, still waiting on getting seen at CAHMs...been attending child development centre for the last 15mth.

My son was diagnosed with SPD when he was 2 1/2, some three months ago. I knew from him been approx 12 months that things weren't right. He was very late with his speech - didn't have 20 words by the time he was 2. Health Visitors kept fobbing me off saying that he was little and to give him time - I felt like I wanted to stand on the roof of my house and scream.

SALT eventually saw him but could not give any definites - they said it didn't matter what it was - it was making him better that mattered - I wanted to know.

I found a private Special Needs Educational Expert - she diagnosed DS with SPD on first visit. He is sensory seeking - he loved to jump off the settee, off the bed, jump up and down - any movement really. He would run around in circles and could not tolerate new things. He also played on the floor laying down so that as much of his body was on the floor as was possible - I now know so that he could get the deep sensory input which he clearly needed. Our Expert, also known as Mary Poppins in my house - gave us a Sensory Diet to do with DS. We have now been doing it for three months - I can honestly say that he has developed more in the last three months in terms of talking, engaging and interacting thgan he did in the first two and a half years of his life.

We still have a long way to go but I feel hopeful. He has started a nursery one morning a week which has made him come on even more. THis will increase to three mornings from Sept.

Lots of people do not appear to accept SPD as a condition - my view - abolsute rubbish. At one time people questioned whether autism and dimentia existed. I could tell any of them that SPD does exist. With a diagnosis and treatment the person effected can change dramtatically.

I feel like I ought to do something to raise awareness but don't really know where to start?

Sally

Sally...That is brilliant news! the OT that saw ds is organising a sensory diet for him so after reading your post i am really hopeful

I also knew with my ds, it was me who approached my H.V when he was 2, to help him from him being 2 i paid for him to go to nursery 3 morns a week, and then since last Sept he has gone to pre-school 5 morns a week, he starts reception this Sept...it didn't really help my ds he has got worse not better, but i am hoping this OT helps me to help him.

Pucca

I am sure that when you get your Sensory Diet and you start implementing it that you will see changes. We used to be so specific with DS's to the extent that we would say its time for your exercises now. That has stopped now and the Diet has become part of everyday life which we simply do as a matter of course.

At one point we were thinking about whether DS would need statementing before school but now I am thinking maybe not.

My Council's special needs co-ordinator has been good and has seen DS at nursery and is going back soon. They have said that they will get funding for some 1 to 1 if they think DS would benefit - will have to wait and see.

DS still struggles with his understanding sometimes and can stil babble but his speech has really come on enormously - he can say 4 word sentences whereas three months ago he could hardly speak. Some of his words are still not the clearest but I have no doubt that he will get there.

Its is such a shame that some people don't recognise SPD as a condition - in my area there is not one NHS OT that deals with SPD. If a child has it you have no choice but to either pay private or not get that key diagnosis. It is so wrong - all of these children been misdiagnosed and been let down by the system. What they don't think is that some inout now could mean no statement at school etc etc.

Please keep in touch and let me know how you get on. I don't know anyone else whose child has been diagnosed with SPD - sometimes I can feel quite isolated as its nice to share stories/concerns etc.

Sally

Sally...That is amazing and you are right it is so nice to be able to chat to someone who is in a similar boat, you do feel quite isolated at times.

I will definitely keep in touch

Justabout...I didn't know that, thanks i will take a look at that website

I am sometimes a little suspicious that SPD isn't more widely recognised because it is usually treated and recognised by OT's rather than 'proper' doctors. If you have 'therapist' in your job title, you are lower in the political pecking order than if you are an 'ologist'.

Also proper treatment of SPD's would involve employing many,many more OT's and buying lots of equipment. It is cheaper not to diagnose it.

sally, that sounds really interesting, well done your son

I will pop back later, when i am feeling a bit better (am illing at the mo)

We have just come back from the Waddinton Air Show - it is about 1 1/2 hour drive from me. We ensured that DS had lots of deep sensory input before we left. He was fantastic - am so chuffed! This is the first day we have gone out with him without any meltdowns, sensory overload moments, or just sensory seeking moments. For once I wasn't the one with with a "handful" child.

For me it just goes to show how far DS has come on since starting the Sensory Diet - am so hopeful. As I'm typing this about how positive everything has been a part of me can't help but think when will it go wrong?? God so hope it doesn't.

Sally

Sally...That is really good, i know exactly how you feel about being the mother of a "handful" child, ds was full throttle the other day in Argos - it was awful.

My ds is getting worse by the day, he now won't wear pj's to bed, and he is obssessed with his nappy (bedtime) it has to be tucked in a certain way at the top, infact tonight he wanted to take it off (no way is he ready).

He smells everything and licks everything, "hyper" all the time, he also still smears (poo)...just a total nightmare for him

He also has an impacted bowel (soiling all the time and now wetting), which the OT said could be linked too (muscles) any one else's lo have this problem?

I just still can't believe he will be starting in Reception in September, they are already applying for funding and eventually a statement but i just can't see how it will work at the mo.

DS2 has ASD, ADHD and SPD in a hyposensitive manner.... DS1 has Aspergers, Tourettes and a completely different SPD which is hypersensitive!

Two boys on the spectrum, couldn't get more difference!

Glitter...What made them give you a ASD diagnosis for your DS2? I am stuck in limbo at the min, apparently my ds is a complex case.

Zero eye contact, lining up toys, non verbal until age of 3 even now has big communication problems, hand flapping, ritualistic behaviour, meltdowns.... pretty textbook stuff.

Pucca, I was convinced, properly convinced that DS1 had "just" got SPD, and a SAL delay, oh and a few social problems... I was merrily posting on here, oh, my son doesn't have ASD, oh no. The paed was a little brutal about it, tbh. She was the third we had seen, the first said he thought it was something else, not ASD, the second did the provisional DX that I didn't believe, and the third just went, well, it's ASD, that's just it.

Anyway, yes to the impaction, although DS doesn't smear he witholds and tends to go at night. Messily. Sorry for TMI. The vast majority of his problems are IMO caused by sensory processing issues. It would be a more valid DX to my mind, purely because DS1 would not, IMO have the ASD DX if he had been helped with the sensory stuff sooner in his life.

Thanks to all who have replied...

BigWeeHag...Yes i think majority of ds's probs are sensory, he also eats strange stuff, has issues with clothing and seams in socks. He doesn't "do" hugs or kisses, or touch.

He has really bad S&L delay, infact pead has said (OT agreed) that he has GDD. He also has some social issues, paed has really struggled to assess him as he won't interact at all, he won't with any adult really. His eye contact - paed has reported that although my ds comes across as not having bad eye contact he isn't really "looking", almost like he looks through you. He makes towers out of everything, inc food.

In pre-school the OT observed him and said he doesn't interact with any staff or kids, but he does kind of tag along with a couple of boys and will copy them. He also sticks to the same area.

He has some ritualistic behaviour too, which i won't go into (i am prob boring you to death already)....He is also on melatonin fast and slow release as he didn't sleep.

I am going slowly mad with it all really, and getting no real answers at all.

Has he seen Ed Psych? DS1's verbal score is 32nd percentile, which reflects his delay/ disordered speech, but his non-verbal scores were 98th centile - so top two percent. That spiky profile is part of what caused the DX I think. But DS1 cannot speak clearly, because he cannot hear the difference between sounds.

He's a bit older than your DS - 5 next month. He started to interact with peers about 9 months ago, and although he doesn't seek them out, he likes spending time with them (he just thinks they all hit him - have to watch that as he gets upset - just means a light touch.) He is rule and routine bound, but we are very flexible as a family, and he has to slot in and generally doesn't does.

He doesn't make eye contact unless he wants to, but it isn't that he can't, he just hates it, so fair enough.

BigWeeHag...Yes he has seen Ed Psych a few weeks ago, not had the report yet though, hopefully it should come any day now.

How is your DS getting on at school? Does he like going?

I don't know what makes a dx?

I would say that DD1 has a SPD, simply in that her Sensory profile scored her as having 'definite difference' in all areas except 2. Also, the 'school companion' sensory profile backed up our home questionnaire.

But she doesn't have SPD on her list of Dx, so perhaps when you get a few, they don't bother diagnosing it specifically? Or perhaps it is just seen as an integral part of her brain malformation? Who knows?