Do you ever have times when you question whether what you're doing is having any effect at all?

[sphil]

Am going through a very down period about DS2 atm and need some wise words. Bear with me - this is likely to be a long one...

As some of you know, we're doing an ABA/VB programme with DS2 at home (about 18 hours a week). Within the programme - ie when he's at the table in the playroom - he's making good progress. But the amount of stuff he learns in there that he then uses in the wider environment is tiny. We seem to have been stuck at the single word request level for ages - attempts to get him to use two words have largely failed so far. He just uses the minimum amount of speech to get what he wants and isn't in the slightest bit interested in doing more. He resists anything outside the playroom that smacks of 'testing' - even though he's perfectly happy to work for long periods at the table during programme time. And I've just started thinking - what is the point of him knowing 200 names of animals, foods, vehicles etc if he never uses them in real life? We do quite a bit of Natural Environment Training in our programme (but maybe not enough or we're doing it wrong?) Our supervisor at Growing Minds seems to think it's a bit early for spontaneous comments atm and we should concentrate on requests. But DS2 only likes a handful of things, he can ask for them all already and so we're stuck. It's exactly the point we got to in PECS last year. It's making me wonder whether I'm too stuck on speech and we should be focusing more on other things.

I suppose, if I'm really honest, I've been guilty of a secret hope that DS2 would be one of those children who would make really rapid progress with ABA - even 'recover' . And despite the fact that he's come on a long way in the last ten months the fact remains that he is still severely autistic. That doesn't change, iyswim. He can 'know' lots of stuff but he's still autistic. It doesn't help that the severity is hidden from most people because he's so compliant, cheerful and flexible. When I take him into m/s once a week he's better behaved than many of the children in Reception - but he can't do ANYTHING that they can do.

Bugger bugger bugger

Your DS sounds very similar to mine in that we are still more or less at the one word request stage though he can say phrases like 'car gone' 'Train going by', 'down the steps' and escalator broken' although with very poor pronuciation. The last phrase would sound like 'escussus boken' or something like that. He also is better behaved than most children in that he is very compliant and rather formal in social settings but can do very little compared to the most badly behaved NT child. The phrases he does have are not by chance, they all come from his interests. Is there something your son really likes that you could focus on to get him to say a phrase?

He can say some phrases eg.'lie down', 'night night', 'change nappy', 'Fireman Sam' and 'Bang Chitty'. However he uses them all to ask for those things rather than to comment. It sounds from your Ds's phrases as if he's commenting on the things he likes, describing them - we almost never get that.

Hi sphil, I've seen your name on MN lots, but don't think I've ever had a conversation with you IYKWIM. I'm sorry to hear you're feeling down, and I guess "stuck" with your DS2's development. Its a feeling I can empathise with, with my DD3. She's also got ASD along with DS. She is now 7 and doesn't have any speech at all. Someone once told me that if a child with ASD is not speaking by the age of 5, then its unlikely to happen at all. Now I don't if that's a reliable rule of thumb or not, but I have in my head that developmentally DD3 is about 18months to 2 years so predictions like this won't work for her. But like you, I wonder where it's all going to lead ultimately. You try to stay positive as we all know that development is not smoothly linear, but happens in fits and starts. But then on the other hand there IS a severe SN, about which you have to be realistic. Its hard and at times its just plain crap.
So no real words of wisdom from me, just wanted to post to say I think I know where you're coming from
{{hugs}} from theheadgirl xx

Electra - yet more stuff I've never heard of... Tell me more about Vince Carbone. Also I've heard of ABA, but assumed it was appropriate for a child who purely had ASD and nothing else going on.
DD3, because she has Downs and ASD, and I'm told is atypical for both these conditions doesn't seem to have any sort of real programme going on. She goes to a school for SLD, and is one of only 3/4 children with DS there.
The things that you are all doing with your children - have they been recommended by professionals, or other parents, or have you been left to find things out yourself?
Sorry to hijack, sphil, I know your OP is more about your frustrations over whether your programmes are actually working...

My DS is still only at single words sphil, so I know where you are coming from. But to cheer myself up now and again I count up how many single words he knows, or can name in books - it is a very long list and could almost be 100. When we started ABA he only had two words - "go away" (pretty apt for an ASD child!). I know what you mean about feeling down, and when you hear about other ASD kids doing ABA who are now saying sentences, it makes you sad/envious. It is hard sometimes to keep plugging on, but I guess there is no choice (for my DS, nothing except VB worked, not PECs, not TEACCH, not makaton). Big hugs to you, I think you are doing the right thing but progress can seem so slow, unless you do a list of all he's learned since he first ever began ABA? That might cheer you up? Big hugs anyway.

Thanks for that Electra - will read some more about it and be in touch.

Thanks everyone. Electra - I think you may be right about the mand training. One of my tutors is going on the Carbone course in March, so will get her to ask lots of questions. We do get him to mand for everything, which he does willingly. He also mands spontaneously a lot during the day - very forcefully! (At home, but not at school)But it's difficult to extend because he doesn't want that much - or it's the same things over and over again. We had a breakthrough with this recently where I discovered that he is equally happy to listen to the theme tunes of his favourite TV programmes on a CD as he is to watch them on the screen. I did a choice board of about 20 different tunes with the idea that he could first point and then ask for the ones he wanted. He only needed the choice board for a day and within 48 hours had mastered the mands for five or six favourite tunes. So if the motivation is there he can do the speech! How did your tutors work on finding new things for your DD1 to ask for?

Theheadgirl - thanks for your understanding. Our supervisors firmly believe that the 'won't talk if not talking by 5' theory is a load of rubbish btw. They argue that the brain stays 'plastic' throughout life - they tell a wonderful story of an elderly lady they met in an institution who they taught to speak. Her first word when asked 'What do you want?' was 'Men!' which makes me and at the same time.

Ama - I know if I did that list I'd realise how far he's come. Have just cheered myself up a bit by watching some video of him working with a tutor here - stacking 7 blocks independently when 9 months ago he could only do 2 and you had to hold the bottom one for him. I think sometimes we're to close to see the progress iyswim.

Good to hear the "wont talk if not by 5" theory rubbished!
I predict then, to paraphrase Joey from friends if you ever watch it, that DD3's first words will be;
"Sandwiches. No, Men. No, Sandwiches. Hell, I want Men On Bread!!"

I think it's really hard to make that transition to realising that your child isn't going to suddenly become high functioning (unless they do of course). I went through that when ds1 was your ds2's age. And my friend with a ds the same age as ds2 has just/is going through the same now.

I think the most helpful thing for dealing with all of that was Kaitryn's stuff at GM, about how you don't know the future and understanding how executive function improves with age- we're really seeing that with ds1 now, but he's almost 9. Perhaps you could ask for one session with Kaitryn to replace a Steven session to go through it. I really found it helpful.

GM base their stuff on Vince Carbone- that's who Steven worked with a lot. They say they like to make it slightly more fun than Carbone, a bit more energetic- but it's basically the same.

DS2 is a sweety you know. I'm hoping he might end up published in Autism (although he won't be identifiable- I have to change the photos to line drawings and you know his name ha changed etc) I'll send you a copy when I submit. And you know 200 words sounds pretty amazing to me. Even if they are only used in the room at the moment. DS1 has none as you know and your ds2 had very few on the videos I've seen- he must have come on massively.

Sphil

I don't normally do this and I will probably get shot down in flames by everyone, so sorry in advance. But I really think you should consider going to the RDI workshop in May and consider switching to RDI.

I do totally sympathise with how you feel and in many ways with RDI we are in a similar position that we feel haven't progressed very fast - but what Ds2 has learned he uses in everyday life - he monitors his environment better, he looks at faces more, he expresses feelings spontaneously, he is starting to problem solve much better. And in the end as you say, this is more important than being able to name 200 animals - (although in Ds2's case he often can unfortunately - bit too keen on his animals).

I started typing a lot more but I have just deleted it all, because I know I will offend people. Please don't think I am trying to do ABA down or anyone that does it and I wouldn't say this to everyone, but I do think you would get on well with RDI and would see more progress in the areas that you would like.

Sorry that probably doesn't make you feel better. In the end we are all doing what we feel is best - and none of us have a glass ball for the future.

I have a friend who has switched to RDI from ABA, then VB. We meet up quite often and compare the 2. And have analysed what it does for various children. The only thing I would say against RDI for sphil's ds2 is that like ds1 he is actually pretty good at the stuff RDI focuses on and that VB may well serve his needs better.

We had a chat with our tutor (who works with my friend's son and ds1) and asked her whether she thought RDI would be good for ds1 (she's quite enthusiastic about RDI) and she thought no, that VB was better for ds1 at this stage.

We do some minimal RDI type activities in daily life (such as getting ds1 to walk at my speed when we're away form cars and traffic).

oh and I meant to say that if you ask Steven he should be able to incorporate RDI type stuff into your program as well.

Your dd is lovely too electra. I think all 3 of us have passive children (although ds1 is shrieking like a banshee tonight).

I think it's always worth checking out things as your child grows as well. My friend who moved from Lovaas to VB to RDI probably needed to do it in that order. the ABA years taught the skills that can now be modified through RDI.

Another firend locally uses Sean electra.

Thanks Electra.

Yurt, to be honest you really can't combine RDI and ABA - and RDI just isn't a pick and mix approach - it is incorporated into everything you do with the child and a lot of its principles are opposite to ABA. RDI doesn't really "focus" on specific skills - it is taking a child through development again at a pace at which they can cope with it (extremely slowly in our case though that's possibly because that's the pace at which we can cope with it ). Ds2 is quite sociable and really wants to interact so I rather arrogantly assumed that he would be ahead of a lot of autistic children coming into RDI. But when you actually analyse what he could do - he was showing most of the stuff that the RDI people say are the core deficits in autistic kids, and I would be willing to bet that most autistic children are the same.

These would be things like -
share an experience by smiling at you or laughing with you, borrowing your perspective (eg are they soothed by a reassuring look from you?), co-ordinating with you (walk side by side, converse reciprocally), reflect on past experience and anticipate future experiences, can they respond flexibly, e.g. come up with multiple right answers?

Sorry to go on but whilst I don't want to push RDI down people's throats, it does tend to get classed as a therapy just designed to teach social skills and it's not - it's aimed at addressing all the key deficits in autism - and if a child doesn't have those deficits they are not autistic.

I really think that there are certain skills that need to be in place before you can do RDI though - it won't teach language for example. It doesn't have a way of teaching imitation. For some children that happens in their development, for others it doesn't.

So for example from your list, yes ds1 does share an experience very well (and so does sphils' ds2 from the stuff I've seen- he's very connected), ds1 does borrow perspectives, he seeks permission for example, he often checks me out to see my response before doing something. We do the walking side by side thing- which he can do away from distractions. On the road letterboxes etc are far too big a pull, he obviously can't converse as he can't talk, so reflecting on past experiences etc is out and can't be worked on until he has the language to do so (although we do use photo albums and diaries at lot). He does have problems with flexible thinking- but some of that is due to executive function problems- which can be addressed by fast trials etc

My friend who is using RDi has a child who is very different from ds1. He is a lot more able in terms of what he can do, but she says, a lot less able to relate and be aware socially. My main objection to RDI is that Gustein says it can be used with any child with autism and is the best therapy for every child with autism. I don't believe him. His publications are on children with high functioning autism and it doesn't teach severely autistic children the basic skills that they need to learn- such as imitation or vocabulary. That said, I think it is a very good therapy for some children who have particular problems. I don't think its is good for children who have very large language deficits.

Saker - I am really interested in RDI, but though I've read the big green book on it, I still can't quite get my head round it. Is it possible for you to name one or two simple easy exercises we could start with to get him doing the eye contact and reciprocation? The big green book (sorry, can't remember name but it's on RDI) seems to start with games that involve 10 bean bags and 4 people, neither of which I have! Any advice most welcome.

There are lots of videos on the connections centre website ancientmiddlemum- they are a useful resource. You could have had my RDI DVD but I flogged it a while ago

thanks yurt, what a great site!