Daily Mail article - "The Great Autism Rip-off"

[TotalChaos]

www.dailymail.co.uk/health/article-1023351/The-great-autism-rip---How-huge-industry-feeds-parents-de sperate-cure-children.html

Interesting but rather one-sided as written as an "expose" of alternative practitioners and "treatments" for ASD. A shame that they didn't present information about the less controversial therapies/ideas that are primarily not available on NHS.

Oh sure some progress, but for some these interventions can be just what they need - the problem is the assumption that what works for child A will also work magically for child B.

Staying with the example of AIT it has worked really well in some cases- such as Georgie Stehli and Lucy Blackman (although both had it delivered by very experienced practitioners) but that of course doesn't mean it will work for all kids with ASD.

Which is where it would be helpful if the pros were more open to guiding parents through this stuff. Lets face it they offer bugger all else (not even stuff like OT - which delivered in a Jean Ayres type way would probably help a lot of kids on the spectrum).

My child is 9 and non-verbal, if someone tell me that X will get him speaking then if it looks possible, is affordable and is unlikely to do any harm then we'll give it a go. He has made it pretty clear to me that he wants to speak so I owe it to him to look into this stuff (the advise we got from the NHS was that 'he;s not capable of anything so its not worth trying to do anything with him'. I suppose that's the 2000 equivalent of being advised to put him in an institution and forget about him. He already done a lot better than that prediction )

Interesting about the volume Tclanger.

a poster on here felt her child's behaviour deteriorated after doing the listening programme.

oh yes I remember that. I suppose that reinforces the need for it to be done properly by people who know what they're doing.

I paid £2200 for my son to attend the Dore group not only did it not make an ounce of difference but once they realised that they wouldn't give me any more appointments

I am still paying for it as I had to sign a loan agreement !!!!

Oh yes Dore is/was (aren't they in administration) ridiculously overpriced.

And again - if there was decent OT available then people wouldn't be going to Dore.

are tehy in administration I hope not I will never get back my money!!!

they're hoping to find a buyer peanutbear but they've stopped trading!

I actually have had some phone appointments with an NHS OT- who is excellent - and rarely for the UK has a good understanding of autism. He said he'd love to take ds1 into a gym and work with him but he can't - he doesn't have time to work 1:1 with children.

I've just completed a couple of courses on sensory processing and ds1 really needs OT input. He is sensory seeking the whole time- most of his challenging behaviours are centred around sensory seeking. But once again we're having to fund it/do it. So if anyone knows where to buy decent OT type swings (indoor probably best) please let me know!

I so agree with the need for decent OT (I've just done the same online course on sensory processing as Jimjams).
Ours has just put DS2 on a form of AIT called Therapeutic Listening - has anyone heard of it? He's been doing it for two weeks - haven't seen any changes yet BUT he is much much more relaxed physically when he's listening. He also seems more able to process spoken language when he's got the headphones on - I wonder if it's because the music blocks out distracting environmental sounds?

I'm positive enough to ant to continue anyway, though the reports of it causing deterioration do worry me. There are three children doing it at DS2's school - all with totally different SENs - yet they all seem to be using the same CD! I thought AIT had to be tailored to the individual child?

cyberseraphim, there is a statistic about children with ASD who will "recover" regardless, something like 5%. Can't remember and nae doot its out of date anyway.
One thing that may sound silly to most of you, at least without the "establishment" professionals involved you can try what you want when you want (cost allowing of course) which can be a good thing or a bad thing.....

Yes that's true Davros. Although lots of stuff I want to be able to access (like the great sensory processing OT type stuff) seems to be in the States. Mind you if I lived there knowing my luck it would be the other side of the states or something.

Davros - that last comment makes perfect sense to me. Particularly after having a GP wittering on at me about the dangers of labelling when I told her how worried I was about DS after being nearly a year on the joint clinic list without having seen a paed. With support like that.....

My dd hasn't been the same since doing the listening program. £300+ down the drain imho. If anything dd is more hyper and more sensitive to noise. I am so angry as we did it for 3 months and what a waste of 3 months that was. Be careful is all I am saying. I am now very wary of trying anything like this and have a half used kit that I can do nothing with!!!!

Sell it Ilovehousemusic.

My friend was looking at buying TLP (she did it before and it helped her dd a lot) - we were discussing going halves. I could run it past her.....

J has had the sensory integration stuff, on the swings and whatever, for a term with 2 NHS OTs. It has worked wonders for his dyspraxiay traits, esp. balance and co-ordination, but the only things that they could do with him there that we couldn't do with him at home were the swing things and the giant squashy rolling pin things. The rest of it was stuff like scooting/ cross-overs/ skipping (or possibly that was just gross motor skills stuff?)

I don't think ds1 could do the cross over stuff etc very easily.

In the videos we (including sphil here) saw there were things like huge fabric nets that children could climb in and out of or that could be filled with balls suspended from the ceiling. And lots of swing type things.

jimjams - is this the sort of thing you mean by OT type swing (bloody expensive though..)

www.jako-o.com/produkt/en/produkt_detail.mb1?mb_f020_id=GVDIAXmVzkALWDWLz6&fag=eu&lang=en&set=suche& subset=suche&suchtext=swings&detail=on&gid=&sid=&pid=5025902&kid=&mbv301s=1&mbv301g=9&backs id=&backgid=&groupsortiment=32439&wmnr=92&mbv301_ch=78039

or there's these which are cheaper

www.jako-o.com/produkt/en/produkt_detail.mb1?mb_f020_id=GVDIAXmVzkALWDWLz6&fag=eu&lang=en&set=suche& subset=suche&suchtext=hammock&detail=on&gid=&sid=&pid=5023971&kid=&mbv301s=1&mbv301g=15&back sid=&backgid=&groupsortiment=&wmnr=92&mbv301_ch=6e2b6

or a page full of hammocks here

www.jako-o.com/produkt/en/produkte.mb1?mb_f020_id=GVDIAXmVzkALWDWLz6&fag=eu&lang=en&set=suche&subset =suche&mbv301ch=ba245

No...it wasn't easy and we could only attempt it because the OTs set it up as 'you have to do this with Mummy this week'. He was bloody hard work for the OTs too - he's just soooooo not into doing what others want him to do. But he quite enjoyed all the swing stuff. Hasn't cured his autism, surprisingly enough, but has alleviated some of the dyspraxiay stuff. Sorry. Was just trying to say that some of the stuff doesn't need specialist equipment.

jimjams

for Sensory integration therapy equipment

www.rompa.com

www.southpawenterprises.com, the clinic DS goes (Hopscotch) for his OT uses these

I looked into getting the horse swing myself but balked at the cost.

TFH do a cheaper swing frame that folds but I'm not sure that it is strong enough..... Somewhere I saw some metal type frames that you could hang various stuff from, but cannot find it again.

givemesleeeeep- sorry I didn't mean to sound negative- it's just that ds1 can't really sequence or copy (or probably a bit of both) movements that are that complicated. Clapping and jumping is about it. Probably its something we should work on really given that cross-overs and skipping are relatively easy compared to stuff a child might need to do each day. (But I think a massive % of his severity is explained in terms of motor planning difficulties).

We used to roll him in a duvet but he won't tolerate it now.

Now I did find an el-cheapo do it at home Dore type thing the other day. That could be a good way to work on that basic motor skill stuff.

(But again- this is my point really- ds1's motor planning difficulties are incredibly complex, massively contribute to his disability - I think motor planning is the biggest contributor to keeping him non-verbal- and we can't even access OT- shocking really).

I think I did the same online course as jimjams and sphil (the Greenspan one?) and it was definitely very interesting. dd1 is another one who would benefit so much.

We do the rolling in a duvet thing too, and bibic gave us some other sensory stuff to do with her, and she has responded so much. I wish she could have decent OT too (has never even been mentioned to us - when we brought it up at the last paed meeting it was blanked!)

Would love to have an indoor swing type thing for her (although god knows where we'd put it!) - she too spends most of her time sensory seeking.

We have just started some ABA/VB with her, and so hopefully we will see some progress there.

Hi Silverfrog! Didn't know you were on the course as well. Did you do the post-conference workshop? - That was probably more relevant for DS2 than the main one, though both were good. Are you going to do some Floortime with DD as well as ABA/VB? One of the most interesting things for me about the course was the distinction Greenspan makes between internal motivation and external reinforcement. Though ABA/VB has helped DS2 tremendously - it's taught him to learn - I've come to realise that he doesn't generalise anything away from the table unless there is some internal motivation to do so. For example, like JJ's DS1, he has huge difficulties with motor-planning. He can copy a sequence of two actions at the table (just about) and his movements are very imprecise. But he has learnt to operate the internal mouse on the laptop having been shown it a couple of times - because then he can access his beloved Youtube Thomas clips without having to ask .

I'm finding the Floortime quite difficult though - DS2 is very engaged but tends to want the same game over and over. Very hard to do the extending and challenging thing.