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Labels: SPD v AS/HFA

29 replies

oodlesofdoodles · 15/01/2012 21:57

I'm reading the Out of Sync Child ('the sensory processing disorder bible'). It all rings sooo true about DS that I'm wondering whether SPD would actually be a more accurate and helpful label than mild austism.

What do others here think?

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PurplePidjin · 15/01/2012 22:01

Does he function as NT when his sensory needs are met?

coff33pot · 15/01/2012 22:04

I have only just started to read the first couple pages yesterday. I dont know wether it would be more helpful than a dx of mild autism but I do think it would be helpful to link SPD along with it separately :)

I do know and have battled with camhs/school etc that DS sensory issues were by far causing the most problems for him and that if this could be looked into and improved then I feel it would open his path a bit to concentrate on learning coping strategies for anxiety and learn social skills.

Schools are not fully aware of sensory problems and there is a total lack of understanding with it. At least this was the case for DS school who have fortunately had a wake up call from an OT :)

oodlesofdoodles · 15/01/2012 22:09

Good question. He functions better when he's moving around in the fresh air. His functioning has generally improved since I've tried to improve his sensory diet. I had no idea I was improving his sensory diet until I read that book; I just had a hunch that working on balance and co-ordination might help social skills.

An awful lot of people on here with asc/asc type children seem to be talking problems with low muscle tone/hyper mobility/ poor motor and motor planning skills.

I wonder if the autism industry is coming at it from the wrong end? I wonder if the autism label is just wrong. My ds is very caring and compassionate when he's not flustered.

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coff33pot · 15/01/2012 22:09

But then I suppose we would be looking at a whole load of separate labels as there are so many overlapping.

oodlesofdoodles · 15/01/2012 22:12

My DS is undersensitive coffeepot, so he seems like a docile space cadet a lot of the time. But I now see that his sensory issues impede his development as much as for a highly sensitive child.

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oodlesofdoodles · 15/01/2012 22:13

I mean I didn't used to think he had sensory issues...
Time for bed!

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appropriatelytrained · 15/01/2012 22:22

This is an interesting point and I think the new diagnostic criteria for ASDs are to include sensory problems.

I think sensory problems are also key. For DS, (he is a bit like your space cadet oodles!), who has low muscle tone, hypermobility and a sensory processing disorder, it is hard to see how he would develop social skills and communication skills in a peer appropriate way if these difficulties were left unsupported as they overwhelm him leading effectively to shut down.

He is at his most 'autistic' (he has a diagnosis of Asperger's) when his biomechanical/sensory problems are most challenging.

Chicken and the egg and a whole lot of labels - I think. Treat the child not the label is the key.

coff33pot · 15/01/2012 22:35

DS is the oposite oodles. If his auditory issues are troubling him and he cannot understand anything he runs and hides out. If the room walls are chaotic and loud with pictures at school he is too visual and it plays havoc on his concentration. If it is crowded and noisy then he overloads and starts charging and jumping. If people touch him or paw him lightly he is agrivated and shrinks away.

All these things stop him learning how to speak correctly to people instead of blunt just to get the hell out of there! He cannot sit still long enough to even learn a turn taking game at school let alone read and write. Although at home if you help meet his sensory needs then he can calm enough to have a go at things but there are other autistic issues that still stand out along the way.

At first they thought ADHD combined with AS but myself and then the OT agrees its SPD along with AS/ASD traits.

I know they like to put everything under the same unbrella but its trying to help others like schools learn that all ASD children are all so different and its hard to do without defining things more I think.

hyperotreti · 15/01/2012 23:14

oodles my son is also hypersensitive & I'm convinced a huge part of his difficulties come from motor planning issues (including his speech delay - his speech is very good now but sentences often come out with all the words there (complex ideas) but in the wrong order). He's 5.5yo & has no fixed hand dominance & major midline problems despite months of work.

He's never looked particularly 'autistic' iykwim - he doesn't really stim but had so many absences that we (& neurologist) spent a year convinced he had epilepsy. We massively increased OT input - an hour a day at soft play, swimming, running, climbing, jumping - & they've all but gone. Except now, after a month of not doing enough (Christmas etc) his behaviour & attention are horrendous.

oodlesofdoodles · 16/01/2012 08:20

I agree/have experienced what everyone is saying above.
Coffeepot if things are too hectic ds 'shuts down', if he's not stimulated enough he shuts down.

hyperot yes my ds is also trying to express complicated ideas now, but doesn't have the language basics laid down. He has quite sophisticated verbal stims now. Eg telling a long rambling story about an epic car race between him and class mates. He has to work through the story or song or whatever before he comes back to us.
He also lacks hand dominance and doesn't cross the mid line.

AT one of the many unhelpful assumptions about asc's/spd is that they're all hyper sensitive and the hypo ones go ignored.

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oodlesofdoodles · 16/01/2012 08:29

I do wish ms schools/teachers could get over the idea that plastering the walls with stuff (especially drawings by the kids with great fine motor skills) creates a good learning environment.

I put as/hfa in the title of this thread because that's my ds but I suspect that more severe 'autistics' could be labelled severe spd plus a co-morbidity.

My gripe with the autism label is that its just so inaccurate. Eg, he prefers to be on his own. My ds is very social, but he needs

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PurplePidjin · 16/01/2012 08:41

Dniece who is at the lower end of asd functioning doesn't come close to an nt appearance at any time in any environment.

Many kids and teens with as that i've met have been well able to 'fake it' for a few hours.
in fact, one of the differences i've observed (so not very scientific!!) between as and hfa is that ability to not only appear nt for a while but to see the point of doing so. See a point, any way, it may not be the same point an nt adult would use Wink

rabbitstew · 16/01/2012 09:37

I 100% believe my ds's greatest issues when he was younger were with his muscle tone, hypermobility, and some sensory sensitivities. If you feel threatened by your environment, it stands to reason you aren't going to want to go out in it and socialise with anyone and are going to display an awful lot of anxiety-induced behaviours.... Alleviate the worst of the effects of the sensory issues and you may well find the social issues were more of a by-product of that than a whole, big separate issue.

I think the biggest problem with a diagnosis of HFA or aspergers is the assumption by most people that the biggest problem is the social side and that therefore, where resources are limited, attention should only be paid to that. That is just wrong in many cases and can result in a lot of banging heads against brick walls, since you are working on the icing on the cake, there, without paying attention to the cake. But the problem with a SPD diagnosis is that people probably don't take it seriously, because they don't understand it at all (as opposed to thinking they understand a bit, but not really understanding much at all....).

TheLightPassenger · 16/01/2012 09:39

Interesting discussion. My child's only DX was ever language delay with subtle social communication difficulties, and now his language tests within formal range not quite sure where that leaves him! But am pretty sure he is slightly hyposensitive, the docile space cadet description does ring a bell - except mine is very boingy and bouncy too! I agree with AT, that there's such a huge crossover between the diagnoses, that the priority has to be getting the right individual support rather than the exact right "label"

oddgirl · 16/01/2012 10:02

Interesting thread...would agree that my DS principle issues are sensory...in fact I am pretty sure that if you removed his constant need for sensory input, he would appear NT. His language is now age appropriate and we are discharged from SALT...he is sociable and engaged except when his sensory environment overwhelms him...I have often wanted to remove sensory problems and see which autistic traits remain...very few I would hazard a guess..

oodlesofdoodles · 16/01/2012 10:35

purple maybe dniece has other factors as well as spd?

rabbit and oddgirl I think you've hit the nail on the head. I think working on language is helpful though for child who needs to catch up.

TLP I completely agree re treat the child not the label. That's why I have such a problem with the asc label. It's all about symptoms. Or the other extreme: mri and genetic markers. None of which help my child progress.

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LeninGrad · 16/01/2012 10:55

This reply has been deleted

Message withdrawn at poster's request.

PurplePidjin · 16/01/2012 12:35

Quite possibly she does, oodles - i stick to supporting sil as much as possible and leave it at that Grin

I do like autism as an umbrella term. I have developed a vair icy raised eyebrow to use when people get catsbum at dn's behaviour. I pinpoint the person asking sil stupid questions and say "she has autism" then mentally dare them to keep asking. They don't Wink

Told you I'm supportive

PurplePidjin · 16/01/2012 12:41

Oh and to bring that back to the discussion on here Blush

The actual label ime is only important in helping parents access support and making outsiders back off. If Autism is the word that stops people asking my sil stupid questions then that's what i'll call it. As long as dn has room to be dn tbh Smile

oodlesofdoodles · 16/01/2012 16:46

So if spd is the underlying problem what do you do about it? We've done a tiny bit of aba tutoring which has been helpful; but not sure how to take things to the next level. Do things like RRT actually work? What is sensory integration therapy? Maybe I should get ds to crawl on the floor for an hour a day?

rabbitstew, if you're still reading, how is your ds now? What made the difference?

Hyperot how are you tackling mid line crossing?

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coff33pot · 16/01/2012 19:03

oodles does your ds have an OT?

DS is currently under an OT who gave me a sensory profile to complete. It was scored then had appointment to assess. They visited school and observed ds there and also took in the schools surroundings. Gave the school a report with ideas of sensory integration and explained his sensory issues to them. Is going back to complete a Teacher/TA sensory profile check and then is going to give them training as she herself said they didnt have a clue. OT can advise school of a complete sensory diet to put in place and advise you what you can do at home too. :)

oodlesofdoodles · 16/01/2012 20:26

Hi coffeepot yes we have NHS OT. I saw her the other day at team meeting and asked her about spd. She said she'll send me questionaire.

Ds is at montessori nursery which is great for sensory diet fine motor. I would like to do more gross motor stuff too. Dh made a teeter totter on Saturday as per the out of sync book. I'm wonder if we should get a hammock chair, or maybe even let him sleep in a hammock.

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rabbitstew · 16/01/2012 20:57

(Warning, long post on my favourite subject!...).

Ds1 is now nearly 8 and is a sociable, happy, imaginative, talented little boy who loves new experiences, runs around the playground joining in with the other children, talks confidently in class, is willing to try new physical skills, but who doesn't know when to stop talking! Or at least, he doesn't at home (he never gets into trouble at school) - he'll even tell everyone else to be quiet so that he can keep on with the flow! He's a very different little boy from the repetitive, obsessive, rigid, anxious little boy who started school at 4 terrified of other people, with a selection of little grimaces and other tics, unwilling or unable to tell people his needs, with limited skills of independence and no desire whatsoever to be independent.

Most definitely, what made the most dramatic and colossal difference was intensive physiotherapy. Until he had the muscle strength in the appropriate muscles to use his body efficiently, no amount of attempting to keep him active was going to particularly help his motor or self-help skills and until he could move about without feeling threatened or inadequate, nothing much was going to help his social skills, either. It was a big fight to get him the attention, though - apparently being able to walk is the only requirement in life...

The physio exercises I think also to a certain extent helped with his hypersensitivity to touch. He is still extremely ticklish, still wets the bed, still needs a bit of encouragement to experience new textures on his hands, but he no longer avoids activities because he thinks they are painful and certainly wouldn't freak out being asked to do something even if he does find it a little bit yucky... I suspect it did also help that he was taught to crawl when he was 17 months old, that however slowly he appeared to be progressing, I perservered with teaching him to dress himself, swim and to ride a bike and to hop and to skip, to balance on beams, to do forward rolls, etc. Once he had sufficient upper girdle strength, we also made significant progress teaching him to throw and catch and enjoy throwing, catching and kicking - there is actually nothing wrong with his balance and co-ordination, except for the motor planning side of co-ordination, in that he is not good at working out how to do new motor activities so needs to be taught how to use his body to do them. Now that he has reasonably strong muscles and knows where they are to use them in the first place, he is much more willing to try to work things out for himself, though, and his unbelievably good memory means he doesn't need to be reminded how to do something once he's been taught!

We did also do some retained reflexes therapy with him, but we started this after he'd already made huge improvements from conventional physio, so there was quite a lot of overlap (the form of retained reflexes therapy we did was based on physio-like exercises). However, I think they did help with the progress, as they were a useful addition to what he was already doing, and as we were paying for that, rather than relying on advice from the NHS, he was also regularly reviewed, so it was lovely to see the improvements in his skills and attitude.

Learning to play the piano was also turned out to be a brilliant idea. It helped hugely with his hand strength but also with his self esteem as it's a fantastic activity for rapidly seeing how a bit of effort can bring big and positive results, unlike intensive physio, which is uncomfortable hard work on the basis of a promise it will help with other things in the future, making it a hard sell for a young child...

I also got some advice from a behavioural optometrist, who said his visual skills were about a year behind (which didn't stop him being able to read fluently when he was only 3...), which was what you would expect from a child who was about a year behind in moving about and about a year behind the average for walking. For example, there was a simple exercise for speeding up the process of learning to move his eyes to look at things, rather than tending to move his whole head when he didn't need to. Also, we were advised to encourage him to learn to read maps and try things like tangrams, and this did help with his basic presentation at school and also with his ability to interpret 2D represenations of 3D images, which prior to that wasn't brilliant.

These days, he is doing extremely well academically at school. He is noticeably less good at strategy and forward planning than his db, which I guess may become noticeable at secondary school, but he is basically a very happy, confident little boy these days who feels like he fits in. Long may it continue. He goes to a lovely school and hasn't been bullied at all, which I think has helped hugely, as has having a best friend since the beginning of year 2 - so I hope nothing happens to sour that, either, because self esteem is very important to positive development!!!!!!

oodlesofdoodles · 16/01/2012 21:36

Wow thanks for that rabbitstew. Was that NHS physio? What route did you take to it? We are going to see Rheumatology soon.

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auntevil · 16/01/2012 21:41

I've often wondered with the SPD HFA/Aspergers crossover is a situation created by delay. For years the professionals say developmental delay - during which time a child who has SPD, possibly dyspraxia, hypermobility and co-ordination issues etc, struggles to work out their own strategies to 'fit in'. Learning by rote - whether speech, or facts, having an elephantine memory - so that they don't have to mark make. Sticking to things that they can be good at - computers etc, so they don't have to play sports. Keeping quiet company, as they don't like the noise. Sensory tics to keep motivated etc.
Perhaps if sensory issues were given support early on, whether, diet, retained reflex therapy, sensory integration therapy or whatever you PCT will offer, there might not be such a blurring of SPD/HFA/Aspergers - and each would be easier to dx?