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.

LeuonieD- genetically they divided 2 main groups at the conference. One - where the broader autism phenotype is found in the family - parents may show many traits for example - this one tends to be asociated with multiplex cases - so perhaps siblings with autism as well and is believed to be caused by multiple gene interactions.

The other- singletons - so one child affected and other unaffected male siblings in the family. No broader autism phentoype visible in the family- so parents did not show traits. This was described as being caused by one gene- and was more likely to have an environmental trigger (iirc that bit).

Ds1 and I fall into the former category. My dad has got lots of traits, not enough to have him diagnosed as being on the spectrum, but enough so that he falls close. My mum has some reservation and mild sensory issues. My paternal granddad apparently had some traits as well. I inherited enough to place me on the spectrum and because my DH aldo has a fair few traits (whilst not being on the spectrum as well) so did Ds1.

I haven't had time to read all of this properly but have seen the stuff about buying swings. We have an indoor Southpaw swing for Ds2. You can get these from Rompa but but but they are soooo expensive. Instead buy direct from Southpaw Enterprises in the US - phone them up - they are very helpful and ask for a quote for shipping. They are the same price in US dollars there as they are in pounds here. Even allowing for shipping and import tax they are still considerably cheaper. It really pisses me off that Rompa (who presumbably are importing in bulk and therefore getting a reduction on the Southpaw prices anyway) can then increase the price so much. .

Also Jimjams, do they have any access to the sensory type equipment at your Ds1's school? It's just that those indoor swings are a bit of a nightmare to hang in terms of bolting them into the ceiling. We were lucky that we were having a room changed so we got the builders to put in hooks for us, but they were quite nervous about it and tripled the joists! It might be easier if you could badger the school into setting one up and doing a session each day. Ds2's school does a sensory circuit each morning with pupils who need a lot of sensory input - this might also be worth investigating if your school does do it yet.

..sorry meant doesn't do it yet..

Oh that's an idea Saker- thanks.

Something I can share (I have recently discovered) if you're importing something designed for a disabled person to be used by a disabled person you can get a duty and import tax exemption.

School doesn't have the swings afaik, but I am going to bring it up with them at the annual review. It's in their interest as his challenging behaviours definitely centre around being sensory seeking.

oh wow that's great news re: duty & import tax - I was going to order directly from Southpaw but figured the tax would cancel all savings

Since we started sensory integration work with DS (a month now) he is definitely a lot calmer and less jittery and less preoccupied with running around and crashing into furniture

oh that's interesting. DS3 needs sensory integration as well.....

You need to contact the inland revenue (their website is a nightmare) then they send you a form to fill in and send you back a certificate- your sender writes the details on the package and hey ho you shouldn't be charged.

Drowning in laundry, even if you do end up having to pay the import tax etc, then it still works out cheaper than Rompa. Import tax is a right nightmare, the worst thing is that you get a great huge administration charge by the courier whatever the value of the import tax.

You will need to buy the rings,rotating things etc also to go with the swing. Southpaw should be able to advise you but if not, I can tell you what we needed.

Hi Sphil

Yes I did the workshop too and am finding it very interesting.

The floortime stuff is a lot like what we were doing with dd1 anyway (just through instinct), in a way it's nice to see it validated, for want of a better word. Like you, I find it hard to do the extending and challenging. Dd1 knows what she wants, and that is what we do. If she allows a variation, then all well and good, and we can run with the variation for a while, but if not then it's prtty pointless trying tbh. Although I have noticed that she tends to mull over any extending stuff for a while, and then offer it up of her own accord eventually...

We are hoping that ABA will do exactly that (teach her how to learn) for dd1. She is easy enough to engage, bright and eager, but she needs to see more of a reason for doing stuff, and also needs to connect things together a bit better. I suppose what I mean is that she needs an overall direction to her learning, rather than the haphazard collectoin of stuff that I've done with her - I noticed a couple of weeks ago, for example, that when she was being tested yet agian by a SALT, I was continually saying "I don't think she knows what one of those is" (as in has never seen one beofre, rather than cannot label it) when she was being asked to name common objects (and I mean really common objects - mug, egg, keys, etc) whereas she floored the SALT by calling a "monkey" a chimpanzee (and then correctly identified a gorilla later on...). It is really quite that she doesn't know more of the normal stuff...

oh that would have been a good idea -durr. I had to skip bits of the post conference workshop as I was too busy.

ABA did exactly what you are hoping- taught ds1 how to learn. It's only because of ABA that we can now use some Floortime quite easily, and do this typing thing. And I really liked that Stanley Greenspan said - 'if you need to teach imitation- use ABA - if you need to work on speech sounds etc- use ABA'. I'm really suspicious of those therapies that say 'if you do this then speech will just appear'. They tend to assume the child isn't speaking because of lack of understanding about the purpose of speech, not because the child physically can't.

WHY didn't I think of that?! I had to rush the post conf workshop too and wish I could look back at some of the stuff now. I also wanted to show some of it to DS2's TA.

Re your point about speech Jimjams - I remember Growing Minds saying (when they saw DS2's first video) that many people believe that autistic children don't speak because they don't want to /don't see the social need - but that this was clearly untrue when looking at DS2, who was trying hard to communicate. (This was when he was barely verbal - same video as you saw of him I think?) And that we had to teach him HOW - using ABA. I think that after a year+of ABA he does know 'how'- he makes an attempt to imitate most words and even some phrases, although his diction isn't great. But ABA doesn't always give him the motivation to speak - whereas Floortime activities do.

Silverfrog - I laughed when I read your comment about DD not knowing the names of common objects. I realised a while ago that DS2 knew about 30 different animals and 20 vehicles but not knife, fork, spoon, chair etc.. He has found these 'normal' things MUCH more difficult to learn - but they're the ones he retains best, I guess because he's in contact with a spoon more often than a squirrel .

Yes agree sphil- that's what I like so much about GM- happy to take what they see then fit the therapies to the child rather than the other way round.

oooh I have ethical approval now - can I send you some forms to swap for more video of your lovely boy?

ds1 has done that autistic thing of associating the wrong word with an object, so I think an open window is a 'light' in his world. Bloody hard to correct! Am hoping it will self correct when we start this work on sentences....

Imitation is what we are concentrating on first. Dd1 has good verbal imitaion (has whole sentences copied and learnt) and so we are working on her imitating appropriate words/phrases - more of a challenge for us than her tbh, as we have had to stop ALL questions (eg what shall we do today?, have you had a nice time, etc - all the questions that you use when waffling along to a toddler!) as she is far too keen to copy them.

She flicks through books, and chats away, and answers herself too, so:

"what's this?" pointing at a picture
"it's a pig"

turns page, "what's this?" "it's tree in a garden", all said by dd1...

she has also nailed the motivation thing. She has been able to ask for stuff for ages, so we are working on her using our names (has a mental block about them) to get attention, and then ask for what she wants. She is quite good at requesting things - she can go and find her beloved Maisy puzzle form wherever bad mummy has hidden it put it away and bring it up to me saying "want puzzle" for eg, or ask for something out of the toy chest (usually what I've just put away...)
The trickiest bit is going to be motor imitation. She doesn't get it at all. But she might one day.

Re the conference stuff - I CAT'd you earlier jimjams but happy to repeat here - if I can work out a way to compress, i am happy to share the videos (the files are huge - nearly 80gb in total) and have the whole lot, conf and workshop... I htought after a few hours I'd want to be able to go back and review it, and also wanted dh to be able to view it too...

If you can work out a way SF, I'd love to be in on the video sharing too. Your DD is doing really well isn't she .her speech sounds amazing!

JJ - DS2 does that all the time. Atm 'help' is 'open' and 'ana'(accidents - a Thomas video) has become the word for 'rewind'. You can see the link though, as you can with your DS1's 'window/light'. At least they're not calling apples elephants .

Thanks, sphil, dd1 is doing well - she can talk for England!Sadly, though, she is not able to show her skills off without me - she is ok with dh, but wiht anyone else, pre-school, friends etc, she is unable to do anything. so much so that the LEA has just sent a proposed statement through recommending she stays at her pre-school for another year (she is not 5 until next august), rather than the unit that she would fit in to so well, as none of the professionals who assessed her for her statement are able to state confidently that she has any skills whatsoever. Her pre-school have not been able to get ehr to do shapesorters (she's been doing them since she was 18 months old, and knows the difference between a square and a trapezium and a rhombus).

at home we play a sorting/posting game where she has to pick a picture from a choice of two (sometimes three) and post the picture into her mailbox. she loves it, and can discriminate between a wide range of pictures easily. At pre-school, she won't participate, and they report that she finds the task too difficult. we have taken on a nanny to do the ABA programme, so that she gets used to someone other than me, and that is going well so far. The nanny has been with us for a little over 2 weeks, and dd1 has clicked with her, so it all looks promising....

wrt to video sharing, I think I may have found a way, but it new to me so might all go wrong! You would need to download this programme, and then we would need to be online at the same time to file share.. sounds simple to me, but then I haven't tried to use it yet! Let me know if you want to try, and we can then arrange the details! As I said earlier, i have the whole lot, in sections, so just let me know what you want.

DS2 used to be EXACTLY like this - so much so that I'm sure professionals used to think I was making up the stuff I said he could do! ABA with different tutors (we had 3 to start with and now have 2) has really helped with this. I think it may be to do with learning to tune into different voices? He still achieves less at school than he does at home but I think that's because they don't use ABA techniques. Hopefully this may change soon - Head has asked me to do some training for staff on the next INSET day in June, and they seem quite keen to learn about it at least. How much more remains to be seen...

The videos I need most are the case studies of the children - ie all the bits where therapists/parents are working with children, in both the main conference and the workshop, especially those at Levels 1-5. It would really help my tutors and I might even use it for the school training too, as our Growing Minds programme isn't 'straight' ABA - it's a mixture of ABA and Floortime/Son-Rise type stuff. So yes, I'm very keen to try! Am a techno-numbskull though, so you'll have to explain in words of one syllable. Jimjams is computer whizz, so she may be able to help. Let me know what to do. Will download programme tomorrow as must go to bed. But thanks so much in advance!

Oh, I am convinced that everyone outside the family thinks I am delusional.

I go to paed metings and report that dd1 can't do something (eg jump) and she stands up and starts jumping. When i said that she couldn't walk downstairs unaided, she left the meeting with me and walked down a flight of stairs, while the paed who had come with us to help with doors etc (dd2 was a tiny babe-in-arms) looked at me with raised eyebrows.

I go to SALT meetings and say that dd1 loves singing, and knows a wide range of songs. They start singing Twinkle Twinkle, and dd1 looks at them as though she's never heard the song, beofre grudgingly squeezing out "tar" in a mutter (she is both word and pitch perfect at home...). The last paed meetig was particularly memorable as she tried to engage dd1 i nsinging Row your boat, and kept looking over to me as if to say "well, she doesn't enjoy this much" (dd1 loves it) and each time she looked away, dd1 would start to mouth the words, and when she looked back dd1 stopped. It was farcical. It was all I could do not to shout "Look! She's doing it now!" every time, but thoguht it wouldn't really help me be taken seriously - it feels a lot like I'm in an episode of Litle Britain at times...

I go into pre-school armed with her favourite books, and write huge long essays in her home book about what she currently enjoys doing at home, including any words or phrases I may use with her so that they can use the same language to ease her into the task. i go to pick her up, and they count it as a success if she has smiled at them, or looked at the colour of paint that she wants to use.

she does know how to keep me on my toes

I have the videos in large chunks, as just set the camcorder to run while i went to bed, but you can always edit them down to the bits you need (I say glibly, not knowing exactly how that might be possible, but surely it is possible somehow?)

We have similar problems Silverfrog, my DS is only minimally verbal and will probably never talk for Scotland but I have just discovered that he never talks at all at nursery and no one bothered to tell me until the Parents' Night on Tuesday. I have been putting in the home book all his mini milestones with speech. Do they have some sort of problem themselves with speech which renders them incapable of telling me that he is non verbal at the nursery? Or do they just look at my input and laugh 'Dear dear in denial again' ?

I think that part of the problem is that many people don't EXPECT autistic children towards the severe end of the spectrum to speak. So it's not seen as a priority (whereas sitting on the carpet nicely is ). Steven Wertz at Growing Minds warned me a year ago that this might happen with DS2 - that teachers might not set up a 'language -rich' environment for him because, even if subconsciously, it would be seen as a waste of time. I also think that many m/s teachers just don't know HOW to talk to autistic children - DS2, at least, needs to be face to face with the person, who then needs to speak in a very animated, energised way. When people speak to him 'normally' he just blanks them.

Silverfrog - I think we must be leading parallel lives. Your paragraph which starts 'I go into pre-school...' could have been written, word-for-word, by me (replace 'pre-school' with 'school'). The number of times they've come bouncing up to me, saying excitedly something like 'DS2 said 'open'!' when he's been saying it at home for a year. (And this has been at nursery, special and m/s school)
Today:
1:1: ' He's been very verbal today'.
Me: 'That's great! What has he been saying?
1:1: Oh you know, those noises he makes that sound like words but are hard to understand. But it's still great, isn't it? He's trying to communicate .
Exit one deflated mother. This is a boy who made 200 requests for 36 different things in a day last week (I had to count them for Growing Minds).

I am on my second home-school book already and he's only been at this school for 12 weeks

How do you want to run the video-sharing thing SF?

I got that a lot at DS's private nursery - (a complete underestimation/lack of acknowledgment of what he was actually capable). Like the time I was told excitedly - I said "blue" and he said "blue" back to me. Big wow NOT.

sphil - are you about? Have just tried packaging up the first bit - have oyu downloaded the programme?

will email you (I think I still have your email...)

I thought it was a very poor article and gave very little new info, help as to what to try / what not to try etc.
And this is coming from someone who admits to knowing very little about autism.
Very poor article.