Labels: SPD v AS/HFA

[oodlesofdoodles]

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?

DS1 got a DX of SPD at 2.9 years old. That was changed to HFA at 4.11 after an ADOS test. He's 6.4 now.

I think the ASD is more accurate, and his sensory needs have calmed down a lot since toddlerdom (he was hypersensitive to light and noise, and hyposensitive to movement etc.) He's stopped wearing dark glasses except on very bad days (they aren't sun glasses, they are prescribed - his reaction to bright light is actually physical.) Still likes to be tightly tucked in at night, still have to limit screen time etc.

The movement thing is better this winter - thank goodness. Last winter was hellish because it was too cold/ wet for trampolining, this year he's really coped well with it.

School actually see no evidence of ASD, apparently which is interesting. Phonology is still delayed by about 2 years, and disordered. SALT doesn't think it will improve now, as he has no need to - he's intelligible, even if he sounds weird. I think it's sensory, he was terribly fussy about textures of food and NEVER did the phase of putting things in his mouth as a baby. He's lucky that he has friends - he's quite popular, because his monologue/ strong interest is Doctor Who, ALL the cool kids in Year 2 are into that! While he likes being alone, he also likes other people being around.

WRT the passivity - does anyone else has a child who doesn't seem to impact at all sometimes? E.g, you don't realise they're in the room? He's been like that since he was a baby - least demanding baby in history, although he made up for it when he hit 3!

Hi, oodlesofdoodles. Yes, it was NHS physio. We first got to see her when ds1 was 15 months old, to help with his movement (he couldn't get from lying to sitting, sitting to standing, couldn't roll over, couldn't bottom shuffle, couldn't crawl, couldn't cruise, couldn't walk, still let his head lag back if you lifted him up by the arms, sat with his head tipped back as though he had a stiff neck etc, etc). That was fantastic - she made a huge difference. Of course, once he could walk (once he was just over 2), we didn't get to see her again.... So we struggled on with trying to encourage him to do all the things we'd been told, finding it deeply annoying that you were, eg, told that swimming was good for hypermobile children with low muscle tone, but not how to get such a child to actually swim, etc, etc... and how you could get him to play about with playdough and the other inane things the OT had told us might help when she didn't even bother to do a proper assessment on him and when he avoided that sort of thing like the plague and acted like you were torturing him if you attempted to engage him with it.... I mean, honestly, in what way is it remotely helpful to suggest you get a child to play with all the things it ought to be playing with at its age when the whole point is that it can't and it won't????? He wouldn't even open his own birthday presents, let alone touch playdough. So we tried perservering with finding out why he couldn't seem to apply any force to anything he did, in the hope that a diagnosis would get us some appropriate help even if the actual symptoms didn't - ie was there actually something wrong with his muscles or joints? Eventually we got a diagnosis of Ehlers Danlos syndrome hypermobility type, which we hoped would gains us renewed access to physio, but apparently not... it was just a label for no good purpose (and it didn't really explain the low tone in the mouth and other peculiarities).

However, when ds1 was in year 1, the school raised concerns and he was eventually diagnosed with aspergers. Now, you wouldn't expect this to get you access to physio, but I decided to take advantage of the renewed bite of the cherry and get bolshy with my opinions, so I complained that we'd never had a proper OT assessment, despite asking for one, and didn't feel all ds's gross motor issues had been dealt with by his previous short burst of physio. So we got referred back and refused to get off the physio's list until she'd helped with ds1's areas of weakness, which had been identified over a year before by the neuromuscular specialist he saw (which apparently are common areas of weakness in people with connective tissue disorders, which a genticist diagnosed him with after he saw the neuromuscular specialist...). The OT was marginally more helpful this time, but the physio, whom I had liked the first time we worked with her, was great. And guess what - once we got the help we'd been constantly asking for for the last 5 years, he made huge progress in all areas of his development.

Thanks for replies everyone, really helpful. I will reply in full later.

(after two days off mn): so rabbitstew do you think that your ds problems were caused by eds but it was the asc dx and your perseverance that got him the physio? Glad he's doing well now.

crunchyfrog also glad to hear your ds is doing well (all this gives me hope). You coyld argue that your ds's doc who obsession is a clever shortcut to help him engage in imaginative play with his peers. By sticking to familiar plots and characters he doesn't need to process too much info at once.