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

oh it does sound like the same sort of problem but in a much less intrusiive form than that found in lower functioning individuals. Thanks! Really interesting.

I've been thinking more about ds1 and vision- he can pick out details amazingly quickly (which is why I always assumed that he was a visual learner) but I wonder if he is processing everything as a series of details rather than an overall 'one'. I know one big problem is that he can't settle in an unfamiliar place for hours - he has to check out everything. I suppose that makes sense in terms of needing to make sure that he has a picture of the place- if he's having to process each detail separately.

Might make sense of some compulsions as well. The recent car problem has had to be rethinked- it does seem to be a compulsion where certain cars have to be in certain places (and others he doesn't give a stuff about). THat's how the windo broke yesterday- I took his favourite car out. ((he saw it go- he just wanted it to stay).

I haven't had time to read the latest part of this thread but wanted to respond to Moira's question about RDI.

When you do RDI you usually get a consultant who is trained by the Connections Center and therefore adheres to standards that they set themselves and keeps up-to-date with the therapy. He or she assesses the child and based on that set appropriate objectives for you to work on. He or she then suggests ways that you can work on them and you keep in contact with them to report how it's going, send them video clips and get help when it doesn't work out as planned. In terms of actually engaging the child, they don't necessarily have to be willing or interested to start with, one of the things they have to learn is that it is enjoyable and rewarding to do something with someone. Particularly early on you concentrate a lot on "framing" an interaction to make it as successful as possible - so you might actually physically frame it so the child can't easily get away - e.g. in a corner of the room. Often you might only try to keep them with you for a minute or two at a time and work at building that up. Activities can be very simple like walking along, or the child can play a very passive role to start with- one we used to do with DS2 was to sit next to him and pretend to bring cushions down towards his head. The idea is to establish a rhythym so the child comes to expect a cushion. After a while he started to join in lifting his hands up to bring the cushion down. I don't know if that helps to answer your question at all.

I have no experience of ABA and what it is that is with that that keeps an unwilling child with you in the first place. Is it just the idea of reward? I'm not Ds2 would have got that concept - isn't that the case with a lot of autistic children? What I am trying to say is that I would have thought that if you are able to engage a difficult child in ABA I would have thought you also could with RDI, it's just with RDI the reward is the interaction itself.

Thanks Saker !

I realise now I actually skipped over a lot of the earlier parts of the thread so did not realise how much ground had been gone over already with Yurt1's posts.

The RDI approach reminds me bit of the child psychiatrist who visited us at home prior to diagnosis. She brought a DigiCam to film DS1 then on the next visit would discuss times on the film when he was engaging with us and explaining how we could expand on it. The nursery he goes to does ABA with him but it is ABA lite with no rewards or incentives. The therapy is structured to break tasks down into small steps but his teacher works with him rather than with the re inforcements so I suppose it is a hyrbrid approach I suppose

MOst ABA wrks towards using 'interaction itself' as a reward tbh. We use tangible rewards when introducing something new as ds1 will not engage with any new task without it. Once learned he tends to enjoy it so the interaction or the activity itself becomes the reinforcer. Sometimes backed up with tangible reinforcers at the end of sessions, sometimes not. I think this is pretty widespread. Certainly all the ABA videos(of well established programmes) I saw for my last research project used interaction itself as reinforcement, a lot and is some cases, all, the time.

There's an interesting experiment here which suggests that one difference in those with ASD is a lessened sense of "self". This is interesting, as it is often a lessened concept of "other" that presumed to be lacking, instead:

www.technologyreview.com/Biotech/20167/

I've read that a difficulty to initiate intentional actions, especially one involving several components, is a core issue in ASD. For me this jives with the idea of a lessened self of self: Surely unless one can easily initiate actions at will (not just on impulse), one must be slower to develop a concept of self. (And the other way around, as well.)

Does ABA work because the rewarding of subcomponents of a complex action turns the subcomponents into 1) easier tasks to complete, as well as 2) acts performed (intially at least) "on impulse" (for the reward) rather than "at will"?

And do RDI and Floortime and Sonrise work because the parent creating a relationship in which the child is obviously an integral part, regardless of their ability (or lack thereof) to execute intentional behavior?

And do PECS and RPM help because they reduce the complexity of the intentional action required to communicate?

And is this why language can be lost in a regression in late infancy? Is it that the speaking of words goes at some point from impulse to intentional action, and with this development is lost the ability to initiate language?

Maybe autism is indeed ALL a case of sensory disruption, which leads to both difficulties in perception (input) AND difficulties in intentional behavior (output), and these differences lead to the whole complex spectrum of behavioral and developmental differences that we see in ASD.

I can easily see how someone who must expend huge amounts of "extra" (compared to an NT) energy to interact with the world would be perceived to be "in a world of one's own" even if that is nowhere near the case. Maybe living with ASD should instead be described as "living firmly in THIS WORLD in a state in which perception and intentional behavior both demand much more effort than that required of the typical inhabitant".

INteresting and will ponder. I have been thinking about sense of 'self' since ds1 learned to imitate as it seemed to totally changed the way he viewed our actions in relation to him. I was watching the 3 boys playing together yesterday- he was very much part of his brother's games (very simple chasing game) and was thinking that before he learned to imitate that game would have been impossible for him as he had no way of relating their actions to him. It was as if everyone else's actions were totally irrelevant. Because he learned to imitate so late (aged 7) the change it made to him was very obvious.

I think ABA works in the sense that because the tasks are so small the voluntary activity needed to complete the task and get the reward is minimal. And that can be trained to some extent so you can get longer periods of voluntary activity (helped by shoving a child in a corner where necessary etc ). Growing Minds had a big thing about placing demands on children to respond on demand on time and said it got better with practice (and age). "Demands' here being things like 'give me X' not major stressful things. I don't think ABA is rewarding the impulses as their normally interfering!

In DS1's case doing the informative pointing method allowed me to realise the extent of his difficulties of staying on task. To do IP he has to concentrate long enough to spell out a word on a letterboard. Most of the time he can't- but when he occasionally can- my god the difference. It's like his body is working together and it's all very much more 'lucid' than it usually is. IP includes quite a few tips about cutting out the involuntary behaviours.

I think PECS and RPM work differently. SO PECS does reduce the complexity, but with RPM the child is constantly prompted 'come on' 'do it' 'now' 'quick say it' etc etc so in effect you are trying to outpace the involuntary behaviours. I think Soma calls it 'outpacing the stim', but I don't think it's a stim as such, at least not in the ways the word is sometimes used. I find it exhausting to do RPM/IP tbh because as soon as I stop my chorus of 'come on, do it' etc then he's off. BUt that might come with practice (and is the reason I think it takes so long to learn with a new person- the new person has to find the 'right pace' and has to be an extremely active participant in the interaction.

Growing Minds also do 'Son Rise'. (they;ll do a mixed program. They didn't suggest any Son Rise with ds1 as they said he didn't need it but I think from the little I've heard them say about it it is more about establishing a relationship when a child is very unconnected to who you are. MY view of Son-Rise is that it can work well providing a child is developing under their own steam a bit (by which I mean developing imitation themselves, and some speech/language themselves). It doesn't seem to have an answer for children like ds1 who get 'stuck' developmentally eg by not developing imitation. I guess it will work if you do have some independent development as it will expose the child to lots of interactions, from which they can learn plenty iyswim.

I think elOfant from reading bullet's posts here that you are almost certainly right about sensory and perceptual problems (and I have a paper to hand that I've read the title of and not much more- which I think links the severity of sensory disruption to the severity of autism).

I do believe that if a child doesn't get to practice 'normal' interactions then that will have a knock on effect on theory of mind etc. I'm not convinced that theory of mind deficit comes first. Although I know little about HFA and wouldn't pretend to. There's a good paper by Stuart Shanker linking sensory difficulties with later TOM difficulties. I thought it made real sense.

oh elfofant- regarding the living in this world. It reminds me of Georgie Stehl (spelling??) who had very severe auditory integration problems and was dxed as severely autistic (she could hear toilets flushing 3 doors away). AIT 'fixed' her auditory problems and because the rest of her senses seemed pretty intact effectively 'cured' her autism. Her mother said she realised the Gerogie hadn't been crazy, but had been crazed.

Had a quick look at RDI 'core deficits' and they do recognise self awareness. They provide lots of opportunities for co-regulated interactions as well which will help with TOM deficits etc. Can't see much on sensory/involuntary behaviours but have skim read.

Might be of interest to some - have just come across SPotlight. A programme that has been developed specifically for AS and uses quite a few RDI ideas (and combines a bit with DIR-floortime).

here

Yurt, be sure to check out some of the following, available here. The "Language is more than speech" case study is especially interesting:

GERNSBACHER, M. A. (2003). Is one style of autism early intervention "scientifically proven?" Journal of Developmental and Learning Disorders, 7, 19-25.

GERNSBACHER, M. A. (2004). Language is more than speech: A case study. Journal of Developmental and Learning Disorder, 8, 81-98.

GERNSBACHER, M. A. (2006). Toward a behavior of reciprocity. Journal of Developmental Processes, 1, 139-152.

GERNSBACHER, M. A., & DAWSON, M., & MOTTRON, L. (2006). Autism: Common, heritable, but not harmful. Behavioral and Brain Sciences, 29, 413-414.

GERNSBACHER, M. A., DAWSON, M., & GOLDSMITH, H. H. (2005). Three reasons not to believe in an autism epidemic. Current Directions in Psychological Science, 14, 55-58.

GERNSBACHER, M. A., DISSANAYAKE, C., GOLDSMITH, H. H., MUNDY, P. G., ROGERS, S. J., & SIGMAN, M. (2005). Autism and attachment disorder. Science, 307, 1201-1203.

GERNSBACHER, M. A., & FRYMIARE, J. (2005). Does the autistic brain lack core modules? Journal of Developmental and Learning Disorders, 9, 3-16.

GERNSBACHER, M. A., & STEVENSON, J. L., KHANDAKAR, S., & GOLDSMITH, H. H. (invited). Why is joint attention atypical in autism? Child Development Perspectives.
GERNSBACHER, M. A., GEYE, H. M., & ELLIS WEISMER, S. (2005). The role of language and communication impairments within autism. In P. Fletcher & J. C. Miller (Eds.), Language disorders and developmental theory. Philadelphia, PA: John Benjamins.

GERNSBACHER, M. A., SAUER, E. A., GEYE, H. M., SCHWEIGERT, E. K., & GOLDSMITH, H. H. (in press). Infant and toddler oral- and manual-motor skills predict later speech fluency in autism. Journal of Child Psychology and Psychiatry.

el0fant- pls can you email contactus with your latest email address? THanks MN Towers

oh I really like Morton Gernsbacher. We think in similar ways (and have very similar children).

El0fant

That's interesting what you posted about sense of self. In the slides that Steve Gutstein presented to us when I attended the RDI training course a couple of years ago the first few are about this and form the whole basis to his ideas about autism. He proposes that autism has a common pathway beginning with neurological impairment (which may be triggered by many causes including sensory integration problems). This disrupts the normal feedback system between parent and child ie. the intersubjective relationship (IR).

Quoting from the slide "In the IR, each participant in the dialogue strives to grasp the subjective perspective of the other, an effort that results in a "meeting of minds" in which the partner's thoughts make contact, connect and coincide." Then he quotes Peter Hobson "By missing out on having meaning first pass through other's minds, people with autism never discover that they are mental beings with the capacity to function in their personal mental space in a creative and flexible manner."

The ability to realise that you are separate person from others is part of normal development which begins with the child realising that the parent is separate from them, then moving on to seeing that though separate they can relate to the same external thing together, then moving on to relating to an internal thing together (basically theory of mind), and at the highest level relating to each other's emotional state in a context of past, present, future. In most children with ASD they don't get as far as the first stage, and the aim with RDI is to go back to the beginning and take them through these stages one by one, extremely slowly and in tiny pieces until they do get them.

I've just moved to London from America and was looking for mums groups, which is how I found the website. But I'm also a consultant for ABA/VB and was wondering what services were like in England. I'm not really planning on working here, but i'd still like to know anything you can tell me about services, such as is it hard to get a dianosis, what services are available to your children. Are there lots of support groups. I've thought about doing some volunteer work if possible. I'm a mom too. I have a two year old and another on the way.