Link to US video

[zaman]

http://www.snotr.com/video/4667

 

What do people think of this? It was posted on another forum that I belong to and I can't get my head round it, so need some input from you.

 

Thanks

[Enid]

OMG, it made me cry, if its true it incredible, wasnt the dad lovely, will watch it again more objectively, will also be interested in others views.

[JsMum]

OMG, it made me cry, if its true it incredible, wasnt the dad lovely, will watch it again more objectively, will also be interested in others views.

OK, off to watch it now, your post has intreaged me.

 

JsMumx

 

[justine1]

I am a little annoyed because it is clear she has learnt how to spell and recognise letters on a keyboard,yet they dont say how.They just say they dont know how,she would have had to be taught this somehow They said she just walked over to the computer and started typing,it may be possible but I dont know.She must have been taught how to do this in my opinion.

 

My son prefers to type than to write,the ed psych even put this in her report, but he has to be told the correct spelling etc,and learn through reading and practising on the computer as well.

[call me jaded]

See very many similarities to my DS, although he's not so hyper nowadays. He cannot use a remote to change over the TV channel but this year he just started using i-player completely out of the blue and will find exactly what he wants on it. It has made my life so much easier. Have plans for the summer with an i-pad. Maybe I should withhold food

[spottydog]

Totally amazing - Is it too good to be true???

My DS is able to spell pretty much any word you give him without being taught (can't explain what the words mean though) and he also just seems to 'know' where correct punctuation goes. I remember his yr2 teacher showing me all this correctly punctuated work ( with speech marks, apostrophies, semi-colons etc) all in correct places, and he said yr 2 children just don't produce this sort of stuff (he's our oldest so we did not know it wasn't 'normal'). Mind you, just found him trying to dry himself with saturated towel that fell in the bath (bathroom and bedroom flooded!)

[JsMum]

 

 

I thought it was amazing and did some research she has her own website and twitter if your interested to see if this girl did for real learn to communicate via typing.

 

http://carlysvoice.com/

 

I persoanlly believe she has found a way, due to the intense therapy she recieved, she could of picked up the words used in her daily therapies and then when had access to a keypad started to type.

 

I think what ever the spectics, its a real achievement that this girl is able to communicate.

 

JsMumx

 

[JsMum]

The thing about todays techno, for some reason My J just knows how to work it out and if he does get it wrong he isnt bothered, where as me, im scared stiff to press a button on the pc incase it doesnt like it and switches off and never on again, J got an ipod for his birthday and within hours he knew how to use it fluently, give him a remote control and he knows what the buttons do, if I want anything on sky now he is the one who tells me what to press, well actually he presses it because he has taken the control off me in total disabelife I dont know what to press, he has always been very apt on techno, especially pulling them to bits and then reasembling them.

 

I dont know why these kids know how to do it.

 

JsMumx

 

[Enid]

mines the sames jsmum!!!!! cant wash his own hair but got an iphone and worked the whole thing out straight away, I am always asking him how the sky remote works now we have sky plus!!

[baddad]

Somebody else posted this a few days ago, and, sorry, i'm very sceptical...

Firstly, it reminds me far too much of the documentary about the whole touchpad thing that happened in America, the 'breakthrough' that enabled autistic people to communicate and turned out to be their carers typing what they thought the autistic people might want to type, and that was that they were autistic because they had been sexually abused. I can never remember the name of it, but CMJ pointed me in the right direction last time. Obviously no sexual abuse this time, but the news report is very unclear about the 'method' and we don't actually see the girl typing very much at all - the edits are all rather, erm, unclear; close up on girl one finger typing, close up on screen with letters on, but no shots of a girl typing while the screen is also in shot.

The other thing is that it perpetuates the long held NT 'Myth' that autistic people are nt people somehow 'trapped' in a reluctant mind/body - the messages 'help me' etc. It could be that this, if real, disproves the idea that the 'myth' is a myth' or that it is some exception to the rule, but it does fly in the face of what autistic people who can communicate generally tell us, and all of the medical evidence that seems to back up what they tell us. There's a t-shirt slogan that says something like 'a cat is not a confused dog' or some such - the point being that an autistic person isn't a 'lost neurotypical'. This report has all the hallmarks of 'confused dog' assumptions, and includes an opening sequence championing expensive intensive therapy programmes that are popular with American parents (and - IMO, sadly - increasingly over here) but far less well received among the autistic community itself.

Finally, her conceptual understanding, according to the text she is said to have written, sounds not only 'nt' but 'adult nt'... 'I am not what I appear. I am cute, funny, intelligent - please don't judge me'(?) So much theory of mind in there, so much empathy regarding the ways that other people might perceive her, and, er, so much what so many parents want to believe, especially the ones investing in hugely expensive intensive therapy programmes and 'cures'...

That said, if my scepticism is misplaced i'd happily eat the above words. But I honestly doubt that's going to happen

 

L&P

 

BD

[keith1]

Finally, her conceptual understanding, according to the text she is said to have written, sounds not only 'nt' but 'adult nt'... 'I am not what I appear. I am cute, funny, intelligent - please don't judge me'(?) So much theory of mind in there, so much empathy regarding the ways that other people might perceive her, and, er, so much what so many parents want to believe, especially the ones investing in hugely expensive intensive therapy programmes and 'cures'...

 

How should she sound? Should she have angry defensive walls like so many autistics? "Theory of Mind" is a myth, btw. It's an approximation, a trick to use if your direct perception of the world is misfiring. And autism is just extreme sensitivity, nothing more or less. In the right environment with no dodgy pressures, any autistic will appear perfectly healthy. Because they are. We're just sensitive and reactive to an extent that almost nobody is ready to accept yet. The truth is truly mindblowing.

[trekster]

I am a little annoyed because it is clear she has learnt how to spell and recognise letters on a keyboard,yet they dont say how.They just say they dont know how,she would have had to be taught this somehow They said she just walked over to the computer and started typing,it may be possible but I dont know.She must have been taught how to do this in my opinion.

 

My son prefers to type than to write,the ed psych even put this in her report, but he has to be told the correct spelling etc,and learn through reading and practising on the computer as well.

 

She could have picked it up through observation. My gran used to live in a big old house, she bought a BBC Acorn PC (man im old lol)

loaded it and left me to play with the game. A week later my family came back to grans and i somehow wandered off. They looked all

over the house only to find me playing on the pc. i had managed to switch on the pc (shift-break-break-shift) and load the game. i was happily

playing and no one had intentionally shown me how to do this. i was 3.5 years at the time.

 

If autistics can echo speech, what's to stop them from echoing actions?

[trekster]

I thought it was amazing and did some research she has her own website and twitter if your interested to see if this girl did for real learn to communicate via typing.

 

http://carlysvoice.com/

 

I personally believe she has found a way, due to the intense therapy she received, she could of picked up the words used in her daily therapies and then when had access to a keypad started to type.

 

I think what ever the spectics, its a real achievement that this girl is able to communicate.

 

JsMumx

 

Agreed it is an achievement, amanda baggs communicates via typing and is unable to talk in the conventional way. But she has a voice.

 

[trekster]

The thing about todays techno, for some reason My J just knows how to work it out and if he does get it wrong he isnt bothered, where as me, im scared stiff to press a button on the pc in case it doesnt like it and switches off and never on again, J got an ipod for his birthday and within hours he knew how to use it fluently, give him a remote control and he knows what the buttons do, if I want anything on sky now he is the one who tells me what to press, well actually he presses it because he has taken the control off me in total disbelief I dont know what to press, he has always been very apt on techno, especially pulling them to bits and then reassembling them.

 

I dont know why these kids know how to do it.

 

JsMumx

 

i think our practical thinking is more advanced than NTs but the social thinking is less advanced than NTs.

[trekster]

 

shows a non verbal autistic and her typing.

[keith1]

i think our practical thinking is more advanced than NTs but the social thinking is less advanced than NTs.

 

NTs have social thinking, that Theory of Mind kludge. But social stuff was never meant to be thought about at all. That's where we have access to a purer form of interaction. We can sense everything. In the next century I would like Aspergers people to step up and let go of all these rigid forms, words, systems, tricks. At the moment you're all desperately trying to copy something that's fake to begin with! We have access to the real stuff, if we dare to know it.

[call me jaded]

Somebody else posted this a few days ago, and, sorry, i'm very sceptical...

Firstly, it reminds me far too much of the documentary about the whole touchpad thing that happened in America, the 'breakthrough' that enabled autistic people to communicate and turned out to be their carers typing what they thought the autistic people might want to type, and that was that they were autistic because they had been sexually abused. I can never remember the name of it, but CMJ pointed me in the right direction last time. Obviously no sexual abuse this time, but the news report is very unclear about the 'method' and we don't actually see the girl typing very much at all - the edits are all rather, erm, unclear; close up on girl one finger typing, close up on screen with letters on, but no shots of a girl typing while the screen is also in shot.

The other thing is that it perpetuates the long held NT 'Myth' that autistic people are nt people somehow 'trapped' in a reluctant mind/body - the messages 'help me' etc. It could be that this, if real, disproves the idea that the 'myth' is a myth' or that it is some exception to the rule, but it does fly in the face of what autistic people who can communicate generally tell us, and all of the medical evidence that seems to back up what they tell us. There's a t-shirt slogan that says something like 'a cat is not a confused dog' or some such - the point being that an autistic person isn't a 'lost neurotypical'. This report has all the hallmarks of 'confused dog' assumptions, and includes an opening sequence championing expensive intensive therapy programmes that are popular with American parents (and - IMO, sadly - increasingly over here) but far less well received among the autistic community itself.

Finally, her conceptual understanding, according to the text she is said to have written, sounds not only 'nt' but 'adult nt'... 'I am not what I appear. I am cute, funny, intelligent - please don't judge me'(?) So much theory of mind in there, so much empathy regarding the ways that other people might perceive her, and, er, so much what so many parents want to believe, especially the ones investing in hugely expensive intensive therapy programmes and 'cures'...

That said, if my scepticism is misplaced i'd happily eat the above words. But I honestly doubt that's going to happen

 

L&P

 

BD

 

 

Facilitated communication BD. I didn't hear the word 'cure' BD, think you might have made a bit of a leap there. I saw one very proud dad who had been through a rollercoaster of emotions and a journalist doing his best to expose that! Trapped inside a non-functioning body makes a very good storyline in a Daily Mail kind of way.

 

I also assumed there was a bit of slick editing becasue the actual process would be very slow. It's obviously a frequently expressed doubt as there's a page on her site called And YES I can type on my own with some film of her doing it.

 

My other thought was that it was probably not the therapy other than a motivator had been found. You don't need an expensive SLT to do that.

 

However I could identify entirely with the sensory overload description. We definitely live with that. When he was younger I couldn't touch him at all, he flinched; he has this thing about large open halls - he can't actually stay in them; and supermarkets make him lie down, can predict quite accurately how long he'll last - can we do a pint of milk, or will we be able to get some baked beans too.

 

Overall it seemed like the kind of autism we live with - all the comments about not sitting up or walking when she was young rang true, and many other remarks. It wouldn't surpise me in the least if DS could learn to type - we're on the edge of that I think. Debating whether I could use home made chocolate brownies as the motivator

 

 

 

 

[justine1]

She could have picked it up through observation. My gran used to live in a big old house, she bought a BBC Acorn PC (man im old lol)

loaded it and left me to play with the game. A week later my family came back to grans and i somehow wandered off. They looked all

over the house only to find me playing on the pc. i had managed to switch on the pc (shift-break-break-shift) and load the game. i was happily

playing and no one had intentionally shown me how to do this. i was 3.5 years at the time.

 

If autistics can echo speech, what's to stop them from echoing actions?

Not that I want to get into a debate over it but..... Playing on a PC is very different to actually typing out words and sentences perfectly first time around. I am not saying she is'nt capable of doing it,she clearly is. What I am saying is she would have had to know letters and words,like Jsmum pointed out,it may have been part of her therapy,like PECS/ flashcards something!!!

 

If someone is cut of from the world(pysically,like in the middle of nowhere) and couldnt talk,it would take years for them to be able to type or write simple words as they would have to be taught from scratch.This is clearly not the case here,its america after all,she would have been taught this,maybe the typing is copied but even that in a sense is a learnt behaviour by constantly watching others type.How else do we learn but by watching others?

 

Bottom line is they make it sound as though she never saw a computer in her life and never knew a single word,and they mention her therapy but dont seem to acknowledge that this could be why she can now type not that it suddenly came to her,how does that make her a genius????

 

BTW I think it is great she can now communicate with her family.

[call me jaded]

Bottom line is they make it sound as though she never saw a computer in her life and never knew a single word,and they mention her therapy but dont seem to acknowledge that this could be why she can now type not that it suddenly came to her,how does that make her a genius????

 

Did we watch the same film? lol. I got the message that you too could have a child that can type if you spend lots of money on therapy. Must watch again.

[justine1]

Did we watch the same film? lol. I got the message that you too could have a child that can type if you spend lots of money on therapy. Must watch again.

I will also watch it again but the title says it all!!!

[justine1]

I will also watch it again but the title says it all!!!

Watched it!So the narrator/journalist guy says "a light switched on" and that at 11 she just walked over to the computer and typed "hurt" "help"

The father says about the intense therapy and the thousands of pounds spent,they still(unless I have totally missed something )dont say what methods they use and the dad said it was year after year of very slow progress.

 

Lastly the therapist says they "hadnt specifically taught her the words" to me this clearly says she "just knew" the words?????

This is understandable with speech especially because like with my son he can hear something once and can say it,I can say I never taught him that but he must have heard it somewhere like the telly.

Writing/typing is sooooooooooooo different from speech it has to be taught,maybe not by therapy but someone must have been showing her words like "cat" "dog" etc.

I do believe there are genius' in the world but I cant get my head around this one sorry!!!

Edited July 5, 2010 by justine1

[call me jaded]

Strike out profound and it's a bit more accurate.

[Lynden]

I was the person who posted this the other day.

 

I found it interested because of the stage L is at at the moment having become newly verbal 6 months ago and he is so much more intelligent than we ever knew, because now he can tell us. Already he has a wide vocabulary, and can also read lots of words, many of which he wouldn't have heard from us although he has been obsessed with books since age 2-ish so is read to a LOT.

 

He uses my iphone a lot lately for talking books and simple games (thomas, matching animals etc) which has been great as it really helps with waiting, and he figure out how to use it incredibly quickly so I wondered if he could also type (he can't hold a pencil properly yet due to lacking fine motor strength) so I let him loose on the laptop and safe to say he couldn't automatically type the words He did have a great time typing out his alphabet though

 

If it's genuine I do think it's fantastic she found a way to communicate. I'm with Baddad in that I'm not a huge fan of this current trend towards expensive intensive therapy, but I did like that at least on the clip they didn't purport a cure for autism, or say that she was better, like so many videos do, just that she'd found her voice.

 

A friend commented to me that she was surprised that her thoughts were so 'normal'. However look at the likes of Ros Blackburn - she's very autistic but also very eloquent so could come across as normal if you were to read what she wrote.

 

Lynne

Edited July 5, 2010 by Lynden

[baddad]

Facilitated communication BD. I didn't hear the word 'cure' BD, think you might have made a bit of a leap there.

 

Hi again all -

 

Delia - I didn't mean the video makers (father?) were claiming it as a 'cure', just that the ideas being presented - an nt intellect/mindset somehow 'caged' and tragically thwarted by autism - are ideas that remain hugely popular with cure-hungry parents and those pedalling intensive therapy's like the ones that are being championed. I thought i'd expressed that quite clearly, but apologies if that's not the case.

I'm not sceptical of the idea that someone who struggled with verbal communication could find other ways to communicate, I am sceptical about the idea that when they found a way to communicate there would be no evidence of that struggle whatsoever, and that what they said would align perfectly with what many people with a vested interest, desire, dare I say need wanted to hear. It's convenient, in the same way that 'facillitated communication (thanks for that, BTW) boards' offered precisely what the people responsible for their use wanted to hear. Facillitated communication proved just how dangerous such conveniences can be.

The one phrase we did see her type - after a huge amount of prodding and poking and badgering - was 'Is hhe cute', which regardless of how slowly she might type and/or any other explanation for the editing, was miles-away different from the syntax/context/conceptually perfect prose offered as examples of her wider writing. Coming back to the cat/dog analogy which I know you'll have heard before: I have no doubt that some dogs can make a catlike sound or that some dogs can make a catlike sound. Ask me if the dog-that-can-sound-like-a-cat thinks like a cat (or visa versa) and the answer would have to be no. I also don't think the-dog-that-can-sound-like-a-cat's first words in 'cat-speak' would be 'Help' or 'Hurt', with the kind of implications they carry here.

 

I think maybe we did watch different films (I know that wasn't directed to me, but it seems to apply) or at the very least looked at them with different mindsets. While the expensive therapy was certainly 'linked' it wasn't as casually as 'if you spend money your child could type', or as expressly as 'the therapy paved the way for this amazing breakthrough', and somewehere i'm sure it did claim that they typing was spontaneous rather than taught. While shying away from the word 'miraculous' itself, the presentation all comes across that way. ..

Doing a bit of further research of my own, the consultant interviewed, Nicole Walton Allen, is the joint founder of 'The Behaviour Institute' which offers ABA and IBI services, training, teching, consultancy etc etc. The other professional seen Barbara Fenton Nash appears more in google as Barbara Nash-Fenton, a 'speech and language pathologist' (?) working with Nicole-Walton-Allen.

In this interview it's clear Carly's typing was/is anything but spontaneous:

 

http://andrewjohnpublishing.com/CASLPO%20/...yFleishman.html

 

the 'breakthrough' actually facillitated by a voice output device using pecs-like symbols to produce phrases rather than typing, and after intensive training with an alphabet version of the same hardware on which she rote-learned a small number of 3-4 letter words like 'dog' and 'cat'. Nothing like what's being described (and marketed - BNS is currently 'lobbying' for support online to get carly interviewed on a major tv network chatshow etc ) in this clip. Carly now uses 'predictive text' software on her pc, but the bit I've underlined in this extract from the interview has me wondering who 'fine tuned' the programme for her(?) the text I've underlined is exactly what was happening with facillitated communication boards. I wonder if carly also needed a 'steadying hand' and just how often she 'refused to type' and therefore needed the prompts?

 

Communicating in longer sentences brought new complications. “Typing was laborious,” Barbara says. “We needed to come up with other options to make her more comfortable as a communicator and meet her needs. One of the things we did was to create a page with the relevant words she would need to ask questions, without having to type every word. And so she started to ask questions. She didn’t have that option before. Now she had the opportunity to direct the conversation.” At times when she refused to type, workers were encouraged to write out possible options of things she may have been wanting to communicate and allow her to point to her choice .

 

As I say, I'd be happy to have my scepticism proved wrong on this one, but don't think it's gonna happen. That won't stop a huge amount of investment in the ABA/IBI programmes offered by NWA or Speech Pathogoly offered by BNF (or the books that will undoubtedly be written by them) by parents eager to replicate this success story, or similar seeming 'breakthroughs' from occurring, but I suspect it will all be anything but conclusive.

If my scepticism is well-founded I hope at least that Carly's parents motivations are completely non-commercial, and that any communication from Carley reflects her needs/wants/desires rather than those of the other people involved.

 

L&P

 

BD

 

 

 

[KezT]

Haven't watch the film, but reading the comments I doubt that I really want to

 

However, my son was hyperlexic- wet aught him his letters and the sounds they make, but one day he just picked up a book and started reading it! It was a kids book, but still- we never taught him to put the letters together to make words..... He can also spell almost any word perfectly - I remember having an argument with his reception class teacher who said he had to work his way through the reading/spelling in order and standing outside his classroom saying "spell jumpng, spell school, spell hospital" etc and he got every one perfect (if I'd known then that he was AS, I might have trid words that I didn't think he knew LOL). Like one of the posts above, he can't explain what most of the words he reads/hears mean, but he can write them!

 

Still, on the whole I am very dubious of "miracle" treatments or cures that have worked for one single (usually American) ASD child.

 

[baddad]

 

 

PS: Lynden - just seen your post! (my post got interrupted so took AGES to get written!). Good to hear the successes you're having with your son Things do tend to happen in 'quantum leaps' for our kids, be they regarding speech, theory of mind, reading, maths whatever, and in my own experience a big jump forward in one area often means a temporary step backwards in another area - sort of like the central processor switching priorities on two different tasks, iykwim.

I see your point regarding Ros Blackburn, but I don't think, other than communication per se, that there's a great deal of similarity. I don't think R B would accommodate the idea of being 'trapped in a reluctant body/mind' or even conceptualise it unless asked to do so for theoretical reasons - she'd be more interested in having a bounce on her trampoline! It's not so much a question of the ability to communicate but what is being communicated, iyswim.

 

Hope that makes sense.

 

L&P

 

BD

Edited July 5, 2010 by baddad

[Sally44]

We were shown an Amanda Baggs video by Wendy Lawson during one of her talks about autism some years back. She played it in response to a caregiver who worked with severely autistic adults who said something like "although these adults are non-verbal and severely autistic she felt that there was some intelligence there". So Wendy played the video of Amanda Baggs who is similar to this girl and it really made all of us examine our 'assumptions' on appearance.

I think the difficulty we have is that we judge intelligence on language and communication abilities. If a child is non-verbal we automatically think they must have cognitive impairment and if they suddenly begin to talk or type they are genius. If that were the case then where does Stephen Hawkins fit into this assumption.

How did she learn to type? I dont know, I'll have a look at her website sometime. But hyperlexia is known with children with autism and those children maybe able to read and write language way beyond their comprehension. And many autistic children learn in 'chunks' and learn to read/write using whole words rather than learning the alphabet and phonics.

There is also the other severely autistic boy, Tito, whose mother taught him to write and who has written several books. He learnt words via kinesthetic movement. He too is highly intelligent and yet extremely autistic.

At 2.5 years old my son managed to have worked out the keys on my keyring and unlocked the front door and opened the car and got inside and started the engine!

Regarding theory of mind etc. My own son does have this. But many times it is the processing of all the simultaneous information to get to the conclusion that he struggles with. He can do it fine when watching a tv programme because all the information is presented to you via the TV. Put him in a real life social situation and he will invariably be repeating TV dialogue to himself most of the time and miss what anyone is saying or doing.

[baddad]

We were shown an Amanda Baggs video by Wendy Lawson during one of her talks about autism some years back. She played it in response to a caregiver who worked with severely autistic adults who said something like "although these adults are non-verbal and severely autistic she felt that there was some intelligence there". So Wendy played the video of Amanda Baggs who is similar to this girl and it really made all of us examine our 'assumptions' on appearance.

I think the difficulty we have is that we judge intelligence on language and communication abilities. If a child is non-verbal we automatically think they must have cognitive impairment and if they suddenly begin to talk or type they are genius. If that were the case then where does Stephen Hawkins fit into this assumption.

How did she learn to type? I dont know, I'll have a look at her website sometime. But hyperlexia is known with children with autism and those children maybe able to read and write language way beyond their comprehension. And many autistic children learn in 'chunks' and learn to read/write using whole words rather than learning the alphabet and phonics.

There is also the other severely autistic boy, Tito, whose mother taught him to write and who has written several books. He learnt words via kinesthetic movement. He too is highly intelligent and yet extremely autistic.

At 2.5 years old my son managed to have worked out the keys on my keyring and unlocked the front door and opened the car and got inside and started the engine!

Regarding theory of mind etc. My own son does have this. But many times it is the processing of all the simultaneous information to get to the conclusion that he struggles with. He can do it fine when watching a tv programme because all the information is presented to you via the TV. Put him in a real life social situation and he will invariably be repeating TV dialogue to himself most of the time and miss what anyone is saying or doing.

 

Hi sally -

Again, as with Ros Blackburn, the similarities with Amanda Baggs only go so far. Amanda Baggs is very militant on the whole 'cat vs dog' line of thinking I mentioned - she would certainly disagree (if the clips i've seen of her are representative') with the ideas being expressed here about being 'trapped in her own body' and 'lost in another world' etc.

At the risk of being jumped on, I'm also somewhat cynical about Amada Bagg's motivations (or should that be motivators) as she seems to push a political agenda/view that endorses perfectly the ideologies of those surrounding her. [* NB Please understand I am not saying Amanda Baggs is a ventriloquists dummy or some sort of inverted 'Uncle Tom' character. I'm just saying that she is aligned with and held up as an example by a fairly militant autism 'lobbying group', that has much to gain from her representation of autism)Of course, it is perfectly natural to be influenced by the opinions/motivations of those around you and significant to you (some argue this about Ros B, too, and her 'hardline' views about discipline, a point I fully acknowledge despite the fact that she is speaking 'my language'! ), but i do find it more worrying when people being held up as 'extraordinary' are held as representative models for the wider autistic community, or when they are seemingly endorsing policies/interventions beliefs that are 'on the fringe'. Another example that comes to mind is that guy who was 'cured' (and they do use that word) by DAN and regular speaks on their behalf. As I said, I'm not cynical about the very real communication barriers that exist, just the 'messages' that emerge when those barriers are apparently removed and the methods used to remove them.

 

Stephen Hawking is a poor example to use, because his intellect etc was well established before he became disabled. In many ways his disability may have 'spurred him on' because his academic results prior to being diagnosed were less than outstanding. Theoretically, the understanding that he had a degenerative illness may have led to a more single-minded approach to dsitinguishing himself while he 'still had the time' (which turned out to be far more than was anticipated)...

 

Christy Brown is a slightly better comparison, but again it's flawed because he demonstrated that Cerebral Palsy didn't necessarily imply a learning disability or intellectual impairment, something that is already well established in autism and Asperger's syndrome. Also, though he, along with others with cerebral palsy was 'locked in a disabled body' that's not the situation for most autistic people, especially at the 'HF' or 'AS' end of the spectrum.

 

L&P

 

BD

[call me jaded]

As I say, I'd be happy to have my scepticism proved wrong on this one, but don't think it's gonna happen. That won't stop a huge amount of investment in the ABA/IBI programmes offered by NWA or Speech Pathogoly offered by BNF (or the books that will undoubtedly be written by them) by parents eager to replicate this success story, or similar seeming 'breakthroughs' from occurring, but I suspect it will all be anything but conclusive.

 

 

Not in the least convinced that this is any different from 'you too can have a child that can type if you spend lots of money on therapy'. Semantics or pragmatics?

[Lynden]

PS: Lynden - just seen your post! (my post got interrupted so took AGES to get written!). Good to hear the successes you're having with your son Things do tend to happen in 'quantum leaps' for our kids, be they regarding speech, theory of mind, reading, maths whatever, and in my own experience a big jump forward in one area often means a temporary step backwards in another area - sort of like the central processor switching priorities on two different tasks, iykwim.

I see your point regarding Ros Blackburn, but I don't think, other than communication per se, that there's a great deal of similarity. I don't think R B would accommodate the idea of being 'trapped in a reluctant body/mind' or even conceptualise it unless asked to do so for theoretical reasons - she'd be more interested in having a bounce on her trampoline! It's not so much a question of the ability to communicate but what is being communicated, iyswim.

 

Hope that makes sense.

 

L&P

 

BD

 

Yes makes perfect sense BD - I don't think Logan would come out with the kind of stuff that girl is supposedly coming out with

 

The whole speech thing has been exciting - nothing at all for 6.5 years. Then in Nov we took a (very stressful) trip to the US to visit my hubbies parents and one day he sat and counted his chocolate raisins (one of the only things he would eat there!) 1 through 10!! I expected it would be like when my daughter learned to talk, a few words at a time, but he's obviously been soaking things in the past 6.5 years He's definitely a lot less frustrated than he was. We still use PECS etc for times when he's stressed as he responds to the visual prompts more quickly but he's fun atm - you can really see his personality coming out and he has a real boyish sense of humour - bottom and burp are his favourite words.

 

However, as you said, and as he's shown in the past, you never get the whole package His eating and sleeping have gone to pot again. Ah well - keeps us on our toes!!

 

Lynne

 

 

 

[baddad]

Not in the least convinced that this is any different from 'you too can have a child that can type if you spend lots of money on therapy'. Semantics or pragmatics?

 

?

Really lost now!

I agree that (what you say) is what the video appears to show, but the point I was making is that that's not what the video is saying it shows! No idea whether that's semantics or pragmatics - I just think it's misrepresentation! What they are saying it shows is someone 'lost in their own world/trapped in their own body' escaping that 'prison' by some sort of miraculous typewriter induced voyage of discovery! I reject that what we are seeing is a miraculous 'typewriter induced voyage of self discovery', and more emphatically that autistic people are people 'trapped in their own bodies' and desire escape. I think they're just different, and mostly want to be accepted as different but would appreciate losing some of the frustrations they encounter because of reactions to their 'differentness'. I think they, and we, have to compromise to find something that works for all parties involved. the messages this girl types seem to me to be messages many NT people would type if they were trying to 'think what it would be like to be autistic' - there's a whole level of 'NT' conceptualistation in the mix that I don't think autistic people would share (or perhaps want), and most autistic people who haven't spoken to me through the medium of typewritten messages from 'the other world that is inside' haven't indicated exists.

 

I don't know if that's any clearer or even more muddled, so I'll bow out of this particular semantics/pragmatics debate because it seems a bit wooslum-birdish!

 

L&P

 

BD

 

Lynne - hope the sleeping/eating come back online soon... stick to your guns about them and they will, and the speech and other aspects of the 'quantum leap' will be the icing on the cake. Two steps forward one step back is frustrating, but it's also one step in the right direction!

[keith1]

I reject that what we are seeing is a miraculous 'typewriter induced voyage of self discovery', and more emphatically that autistic people are people 'trapped in their own bodies' and desire escape. I think they're just different, and mostly want to be accepted as different but would appreciate losing some of the frustrations they encounter because of reactions to their 'differentness'. I think they, and we, have to compromise to find something that works for all parties involved. the messages this girl types seem to me to be messages many NT people would type if they were trying to 'think what it would be like to be autistic' - there's a whole level of 'NT' conceptualistation in the mix that I don't think autistic people would share (or perhaps want), and most autistic people who haven't spoken to me through the medium of typewritten messages from 'the other world that is inside' haven't indicated exists.

 

You're projecting.

 

The story is plausible, though I agree it's probably fake.

[call me jaded]

Would dearly love Baddad's powers of perception.

 

I've not been able to discern from a 10 minute film whether what has been reported as being written by Carly actually has. From doing a little further research I see it is obviously a much-doubted ability, so much so that the family have put a film of Carly typing on her website. The inference is that people with LFA couldn't possibly have such NT thought processes. It seems slightly presumptious to dismiss such a concept on the basis that it's not how LFA people think. I'm willing to suspend disbelief and be open to the possibility that maybe she can type. After all she's had hours and hours of therapy and if therapists have been telling her she's cute and funny etc, why wouldn't she believe it?

 

[baddad]

Would dearly love Baddad's powers of perception.

 

I've not been able to discern from a 10 minute film whether what has been reported as being written by Carly actually has. From doing a little further research I see it is obviously a much-doubted ability, so much so that the family have put a film of Carly typing on her website. The inference is that people with LFA couldn't possibly have such NT thought processes. It seems slightly presumptious to dismiss such a concept on the basis that it's not how LFA people think. I'm willing to suspend disbelief and be open to the possibility that maybe she can type. After all she's had hours and hours of therapy and if therapists have been telling her she's cute and funny etc, why wouldn't she believe it?

 

?

I don't have to suspend my disbelief to be open to the possibility that she can type - whatever gave you that idea? I'm perfectly willing ot accept that... I'm just not quite so ready to believe on the basis of what I've seen that she's typed what we're being told she's typed entirely on her own and without prompting or to not be open to the possibility that the 'story' isn't all that it's being presented as. That's not 'powers of perception', it's deduction based on weighing up all the other 'models' of autism I've seen and making a comparison. Perhaps the alternative to 'powers of perception' is powers of 'self-deception'? Who knows - not I! I'm nowhere near perceptive enough!

 

The inference isn't that people with LFA couldn't possibly, it's more that, IMO it seems unlikely, and given the years of struggle that many autistic people have put into dispelling the idea that they are not 'NT thinkers' being stopped from nt thinking by that nasty ol' autism thing they happen to have been saddled with and that that is more of an 'nt take' on what autism is, it doesn't seem presumptious at all to voice that opinion... Of course, I've argued several times that the people who can talk about it are not, more often than not, 'LF' autistics and that it somewhat presumptious for 'HF' autistics or 'AS' peeps to speak on behalf of LFA's (or, for that matter, to align themselves with or appropriate the difficulties of them) - and I stand by that! But i am willing to accept that if many HFA people say they don't 'think in an NT way' then that is probably more likely for LFA people too, unless their 'lockedinedness' somehow makes them more like NT people in their thinking than like the HFA or AS people who say they don't think in an NT way...

 

Anyhoo, shall we agree to differ

 

L&P

 

BD

 

Sorry - just popped back 'cos I realised this was open to misinterpretation as me saying that anyone who didn't think this film was not all it appeared would be delusional:

Perhaps the alternative to 'powers of perception' is powers of 'self-deception'?

That's not what i meant at all... I meant that, in the context of 'polarised views' seeing what you want to see rather than what is in front of you might be interpreted as 'perception' or 'deception' depending on the nature of the evidence and the wider interpretation of it.

Edited July 5, 2010 by baddad

[call me jaded]

Sorry did anyone say they'd done it without prompting? They're therapists, that's what they do (my son's sessions come back with notes on whether physical, gestural or verbal prompts have been used) and I thought they said that a lot of hard work went into every word.

[baddad]

Sorry did anyone say they'd done it without prompting? They're therapists, that's what they do (my son's sessions come back with notes on whether physical, gestural or verbal prompts have been used) and I thought they said that a lot of hard work went into every word.

 

Yes, quite clearly, at about 3 and a half minutes in... 'when suddenly, for the first time, she ran too a computer and started typing'...

Completely different 'story' to the one I linked to by the speech therapist where it was a symbol activated vocalising unit or whatever... but that's not what I meant anyway. By 'prompting' I meant coached in what to say rather than prompted to communicate, but i suspect you knew that anyway! .

Honestly Delia, I am more than happy to agree to differ, I really, really am.

But just for the sake of clarity, do you believe that all LFA's are 'trapped in their own bodies','perpetually swimming under water, lost in (the(i)r own world', or that it may not be all of them but perhaps a significant percentage, or do you think carley is an exception?

 

 

L&P

 

BD

Edited July 5, 2010 by baddad

[call me jaded]

My son has huge sensory issues. If I was trying to convey what I perceive those to be to someone who'd never met him swimming underwater might be a useful phrase. I would be loathe to generalise or presume that is how other people are.

 

By prompting I also meant suggesting what to write about and that would include emotions, so I'm saying the therapists have taught her that she is whatever it was she said. The process is prompt and response, and even for the first two words the therapist said she pushed her to finish.

 

So in other words you're saying she couldn't have done it, I'm saying she was prompted to do it. In the hours and hours of therapy.

 

Either way there's a young girl pretty pleased with herself as she's now off to mainstream high school.

 

 

[baddad]

Either way there's a young girl pretty pleased with herself as she's now off to mainstream high school.

 

Which is fantastic

 

L&P

 

BD

[lollypopz]

She could have picked it up through observation. My gran used to live in a big old house, she bought a BBC Acorn PC (man im old lol)

loaded it and left me to play with the game. A week later my family came back to grans and i somehow wandered off. They looked all

over the house only to find me playing on the pc. i had managed to switch on the pc (shift-break-break-shift) and load the game. i was happily

playing and no one had intentionally shown me how to do this. i was 3.5 years at the time.

 

If autistics can echo speech, what's to stop them from echoing actions?

heehee trekster,I used to have an Acorn Electron(so guess im just as old then)lol,they werent exactly the easiest things to load&

my tape recorder thingy always seemsed to eat the tape&make silly 'ding..pinggg.duuurr' noises lol

I thinks its ace u mastering it at 3.5 years..I couldnt at 8yrs old&i bet I couldnt even do it now lol

[Sally44]

Regarding feeling "trapped inside your own body", my son has said some things about this feeling. He does have other dx, so i'm not saying that necessarily 'autism' makes him feel like that. But he does get very frustrated with his ability to recall words/letters and will hit his head and say "what is wrong with my brain, I can't find it". So (probably due to dyslexia type difficulties), he does have problems retrieving information on some days and not on others, which is typical of a SPLD. That must be very frustrating to experience and to feel that your brain or body is letting you down.

My son also has muscle or movement problems which have not been given a label (as the OT says he doesn't need another one). And anything involving physical activity also gets him very frustrated because he 'knows' what he has to do mentally, but physically his body just doesn't/can't do it. And from how he reacts to that and what he says I know he feels like his body is letting him down and gets very upset at what other children do 'automatically' or 'with ease' is impossible for him.

So I think to some degree he does feel limited and maybe even trapped.