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

I think he's severely autistic in the sense defined by Donna Williams on the other thread. I have said on here several times previously that autism is not his biggest problem. In the past I've simplified it by saying his 'compulsions' are his biggest problem- but in that I incorporate his involuntary movements, his tics and attentional problems as well as presumably sensory problems that I don't fully understand. I don't think it really matters I can guess at a lot of them by reading people like Lucy Blackman. And the problems they describe, the ones that stop them going about their daily life, that stop them living independently is not autism. It's the extent of the co-morbids.

I really believe that autism is not one condition. I honestly believe that the difficulties that are preventing functioning in severely autistic individuals is totally different from those that are affecting higher functioning individuals. And of course they may well be different from person to person. In general I think severe autism is treated as being the same thing as HFA and I think that's often why these children don't progress.

Take for example someone GM worked with. She was an adult who was thought to be severely autistic with very prfound learning difficulties. She was thought to be capable of essentionally nothing. They started working with her, nothing, she wasn't responding to anything. They then suddenly realised that she was responding but it was taking her 30 minutes to produce her response. They reassessed allowing for a 30 minute time delay and she got everything right. Imagine getting to adulthood without that being picked up. Now obviously that is extreme but when you read stuff written by severely autistic/non-verbal adults those are the type of challenges they describe. Big incomprehensible motor planning issues/ enormous processing difficulties/ inability to produce almost any voluntary behaviours. And it's that that we're trying to address with ds1 (and to an extent you can with ABA- especially if you seat the child carefully because you remove a lot of the distraction).

Are his 'compulsions' part of his autism? Possibly if they're sensory driven. I don't really think it matters. The term 'autism' isn't one thing anyway. It's a term that allows us to access services. But his difficulties are nothing like my friend's dd with say AS (who suffers enormously with anxiety) and there's no straight line between them imo. They have different issues which result in diminished social interaction. But they need help to some in very different forms.

To be really frank and I sort of feel that this isn't politically correct because she's autistic, but I read what Donna Williams said and it didn't make a lot of sense. It seemed quite confused to me. It's also interesting that Bullet who is a high functioning adult related to it which suggests that what she describes is not necessarily different in high and low functioning individuals.

I would agree with you that there are multiple causes of autism and multiple manifestations - I think RDI tries to address the net result regardless of the cause. You may not think this is a good approach, well you don't clearly.

I feel very much out on a limb here because no-one else on the board has much experience of RDI and I sort of end up in the position of trying to justify it and probably not doing a good job. Personally I feel it has a lot of potential for many different individuals with autism and a very solid foundation in research. However I think we are going round in circles a bit now and there is little else useful I can add to the discussion so I think it's probably time for bed . Goodnight!

I think the interesting point was about the difference between developing language before or after age 5 and the difference that makes to your understanding. The sensory difficulties (plus co-morbids) will be the same(ish) in some high/low functioning individuals. It's the degree to which they affect functioning that differs. So in Donna William's definition individuals with severe autism face far greater challenges organising themselves, and responding and being able to organise themselves to listen and respond or whatever.

The key part of Bullet's response is that she doesn't have the severe perceptual differences/involuntary behaviours that someone with severe autism has. I honestly believe that that is the main difference. Although like bullet I think it is often better to see each individual as having their own set of challenges rather than thinking too much in terms of HF/LF (although I like the term 'low communicating')

I suppose the question for me (even though it was often subconcious) when looking at/trying therapies was 'can I do this therapy even though ds1 has no attention/imitation/voluntary behaviour. In the case of RDI when I tried I found I just couldn't. It didn't seem to have a way of dealing with those. So we didn't do it. Now those have developed some of those skills I can see that we could access some RDI although I'm not sure how it would cope with lack of speech that isn't that likely to spontaneously develop (although I think for ds1 learning to type is likely to be more useful). I've come to that conclusion by reading stuff written by non-verbal adults and really trying to understand the nature of their problems and which of those can/can't be tackled. That isn't to say that I think that RDI is useless. Just that I think that there are some children it won't particularly benefit. Or won't benefit as much as other therapies might. I think that is true of every single 'therapy' for autism out there. And I think the same child could benefit from different therapies at different times.

But I agree this is going round in circles. And I have work tomorrow.

interesting though and its helped me to really think about the problem of seeing autism as one thing - which is good as I'm trying to make that point at work at the moment.

I can relate to some of DW's experiences, but not to everything, some of it is completely different to me.
I know that everybody is different and it's a question of finding what works for each individual.

I guess at the moment my view is that ds1 needs to be helped to communicate as freely as possible (PECS is very limited- and great though it is -i am a fan- I would prefer it not to be the only method of communication ds1 has for his entire life). I would love him to be able to communicate using typing. Although I also know it may never happen.

Although I also half wonder whether greater awareness (which is what seems to happen with typing and subsequent language development) might make him unhappier. He is very happy at the moment. He loves school, and if kept busy is pretty happy at home (although keeping him busy is hard). Although he gets frustrated and he can't access lots of things he would enjoy - he doesn't know that and he seems a happy soul.
And then I wonder whether I should be doing anything other than keeping a lid on his compulsions (which when bad do cause upset).

I'm too tired!

And the big question is whether DW is high or LF? I reckon that's how she came up with her fruit salad stuff as she's neither..... Well that's how it reads to me anyway...

OK bed - I'm an hour too late.

Thanks for the discussion all.

I am going to bed - but this is fascinating a conversation between Donna Williams and Amanda Baggs

Does Amanda Baggs answer emails? I'm really interested in what she wrote about the Parkisonian type problems as I have suspected for a while that ds1 has episodes of that - was going to ask the paed about it (having read a paper by Lorna Wing about it) (although in his case it shows itself as getting 'stuck' in a kind of jerky movement)

Hi

I had never heard of RDI before this thread but having researched it, I certainly see a lot of sense in it - in that developing emotional intent and understanding are key to promoting more than 'labelling' language. Last night my DS actually came into our bedroom where I was giving DS2 a cup of milk specifically to say 'night night'. This is a first for him but hopefully shows a development of understanding that he has to seek out an audience for his social words - something would have been very obvious at a much yougner age for an NT child. Without disclosing the trade secrets, how in practical terms does the approach engage ASD children which is the key problem that ABA tries to address?

Thanks elofant I was aware there were muttering and issues around Amanda Baggs but have never read up no them as such (apart from on the linked thread here).

She's certainly nothing like ds1! But i find her insights into movement difficulties fascinating. I also really beleive there is no one autism, no 'pure' autism and we should be treating each person individually and looking at why they present as autistic at this moment.

sorry got interrupted I think I'd finished though.

Moira. Gosh I think that was one of my key questions all along That was the problem we had with Floortime (which aslo calls itself a developmental approach) ds1 didn't have the attention to join in activities. He was too easily distracted (probably involuntarily now I realise).

I agree Yurt, about the "no one autism" and about Amanda's insights being fascinating. If I had to wager a guess, I'd wager that her diagnosis of "atypical autism" and "autistic catatonia" are probably accurate. She's been posting about having autism since 1998, when she must have been about 17:

groups.google.com/group/alt.support.autism/browse_thread/thread/28dd93c8211e98cc/1aa0bfb3bafc6448?hl =en&lnk=gst&q=galig+OR+galiganinda#1aa0bfb3bafc6448

Have you seen this, yurt?

www.iidc.indiana.edu/irca/behavior/movementcloselook.html

tea now- but thank you- that looks fascintating will read later. Print off now and read with a cup of tea! I asked the paed about some strange movements of ds1's last year. She didn't know what it was but didn't think seizures (my concern) I now suspect it could be catatonia (having read Wing's stuff on it in severe autism).

I know with Amanda Baggs some of the things she talks about I can relate to and others have no comparison with me or with my Ds1, so it does show how everyone is different.

Read that movement thing-0 thanks fascinating (and the two references are the 'missing' references I've been trying to find - so pleased there's a couple of publications on this!) So thank you for posting!

You're welcome, Yurt.

Have you seen this paper? It actually describes Amanda's history to a T, I think. Here's the conclusion:

"People with Asperger syndrome can experience a variety of mental heath problems, notably anxiety and depression, but also impulsiveness and mood swings. They may be misdiagnosed as having a psychotic disorder and it is therefore important psychiatrists treating them are knowledgeable about autism and Asperger syndrome. Conventional drug treatment can be used to treat depression, anxiety and other disorders. Behavioural treatments and therapies can also be effective. However, any treatment must be careful tailored to suit an individual and overseen by a qualified practitioner. However, any psychotropic medicine should be used with extreme caution and strictly monitored with people with autism due to their susceptibility to movement disorders, including catatonia."

"the inability of people with autism to communicate feelings of disturbance, anxiety or distress can also mean that it is often very difficult to diagnose depressive or anxiety states,"

I presume they're including Aspergers amongst that. I've identified with that aspect for as long as I can remember. When I was about 8 my dad chose to tell me two hours before the coach was due to leave that I wouldn't be going on the Brownie camping trip. I showed no emotion on the outside, but on the inside I was devastated. That inability to express how I'm feeling has continued. Of course, because I can't initiate going to the doctors without a great deal of difficulty, that means that the assumption is made that I've sailed through life with no depression, no worries, no anxiety. The truth is rather different.

Gosh that sounds hard bullet. What is it that stops you showing the emotions?

Lucy Blackman wrote about having an expressionless face and said it was because she couldn't feel/move her mouth properly. (And she had all the same signs as ds1 in relation to that, ridged adult teeth etc- apparently from poor chewing). I presume (knowing nothing) your lack of expression is for different reasons. The problems you've described over the last few days sound very similar to many of the problems described in the books I;ve read about severe autism. The main difference seems to be in degree/control so you sound as if you usually have more control over your responses than they do. I've always got the impression of a completely disorganised body when I read the stuff about severe autism.

No muscle difficulties with me, it's just the same thing I was describing with the speech. I feel things inside but can't get them out. Not all the time, just most of the time. That's why I like the internet, it's the first time I've been able to confortably express myself. Even DH, who I am very comfortable with, struggles to get me to open up and explain things. Of course, there are also times when I should feel things and I don't, which worries me, but I think that's separate to the Aspergers. For example when I was 10 my dad, who I did love, was in a car accident and I felt nothing until I saw his bruises and then just felt revulsion at the sight of the bruises.
I completely agree that it's a matter of degree of severity that matters. I can control a lot of myself and if I'm prepared I can present as nothing more than a bit quiet.

Oh that sounds like Wendy Lawson I think -the way of processing feelings. I've never read anything by her but my friend told me some stuff that she'd written or said, not sure which and it sounds really similar....

Bullet does quick google for Wendy Lawson .
Yep, there's a lot of similarities, but again not everything. For example WL says she has difficulties reading body language. Well, I never even realised that body language was important to anyone until it was pointed out to me when I was 17 or 18 and I didn't know that I was supposed to be specifically trying to interpret it when someone is speaking, so that aspect has sailed me by. If someone talks I listen to their words, not to how much their eyebrows are raised or whether their left foot is perpendicular with their right. I think the only reason I'm not good at picking up on body language clues is simply because I never realised I should be trying, I sort of block out the visual signs and just concentrate on the words. Now I know it's important, but I'm not going to struggle with trying to interpret something that makes little sense to me unless it's pretty blatant. Donna Williams had it so right when she described the autistic spectrum as like a fruit salad.

I read more about Amanda Baggs from her own posts and those who know her, and am now fully convinced that she is "for real" in all ways. Pretty much everything she has ever claimed is substantiated here in diagnoses and write-ups that back to when she was 13 and which reference periods much earlier than that, as well. You've gotta read the whole thing, though:

ballastexistenz.autistics.org/?page_id=289

And she responds personally to many of the crackpots who doubt her here:

hatingautism.blogspot.com/2007/02/proof-of-neurodiversity-fraud-amanda.html

What a difficult and complex history she has had. I can understand why some folks are skeptical...It's quite a difficult story to piece together. And I'm sorry she had to post so many personal documents in order to convince people like me of the truth of her history, but I'm glad she did. Her words will mean so much more to folks if they are not in doubt of her credibility, I think.

Hmmm bullet am pondering that as I never realised that I had to interpret body language (like most NT's I just do, but wouldn't have realised if someone hadn't told me iyswim. So although I might interpret raised eyebrows I wouldn't be aware I was doing it). Do you think there's a sensory/perceptual reason that you don't see it without looking? So for example you can't process your visual input if you're listening to words? I wonder about how widespread the mono chanelling that some describe is across the spectrum.....

Thanks for those links elofant.

Re:mono channeling. I don't have a diagnosis, but I suspect I am somewhere either side of the NT/Aspergers border. At times of stress when I have to speak (like in my counselling sessions bleuuuurgh), I would close my eyes to reduce visual input - it felt too much to be thinking about what to say and to see at the same time iyswim. Counsellor assumed I was doing this because I had a strong visualisation at the time - um WRONG!

I think so. I don't really look at people's faces and I find concentrating on the words more important. If I do try and look at the eyes especially then I lose understanding of the words. I know the obvious ones now in theory, but I don't pick up on them, or a better way would be to say I screen them out.