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Ros Blackburn - see her if you get a chance

(22 Posts)
baka Sat 30-Apr-05 08:31:12

Saw her speak yesterday. Amazing. Before going i thought she had HFA/AS but she's actually severely autistic. Still in nappies, cannot be left unsupervised (as she does things like climb on roofs, or trashes the place), cannot cross the road by hersef, can't cook or care for herself at all and cannot read. And yet despite that level of disability, she is clearly highly intelligent and gave a very funny, well delivered and very insightful (is that a word) talk.

Absolutely incredible. Autism is so weird.

onlyjoking9329 Sat 30-Apr-05 11:18:55

i have never heard her speak, think she was on the tv she likes brick walls and takes her ice skates to bed, its amazing this autism, new boy in my DD's class he is 5 has autism he is A Level standard but wears pampers baby drys, i know this is true cos my DD can spot and name the brand of nappy at forty paces

mizmiz Wed 04-May-05 18:22:59

Baka, I saw her a few years ago and was fascinated, but what I (and other colleagues) didn't understand was how she could rationalise and explain and extrapolate and present things to people with radically different points of view yet couldn't apply the same logic or indeed modification to her own (purported) behaviour.

Just seemed really really odd....

baka Wed 04-May-05 20:14:59

weird isn't it mizmiz- but she was similar to lucy blackman- who is also severely autistic (pretty much non-verbal) yet has taken an english degree/written a book. I think a lot of the problems are sensory or processing. for example lucy blackman only really unravelled language when she learned to type- to learn to type she needed her arm to be steadied- similarly ros, when she first started talking needed to hold her box- now she needs it near her to return to. She also talked about processing speed- unravelling what someone is saying takes ages. lucy blackman talked about getting stuck sometimes when out and about- eg not being able to step off a curb- something my son does sometimes. interestingly they both see autism as a disability- not a difference.

ros talked about not always being able to queue- having to rush forwards, and lucy talked about having to touch things- needing to connect with an object before being able to see it, or being unable to be separated from that object. my son is like that too.

baka Wed 04-May-05 20:14:59

weird isn't it mizmiz- but she was similar to lucy blackman- who is also severely autistic (pretty much non-verbal) yet has taken an english degree/written a book. I think a lot of the problems are sensory or processing. for example lucy blackman only really unravelled language when she learned to type- to learn to type she needed her arm to be steadied- similarly ros, when she first started talking needed to hold her box- now she needs it near her to return to. She also talked about processing speed- unravelling what someone is saying takes ages. lucy blackman talked about getting stuck sometimes when out and about- eg not being able to step off a curb- something my son does sometimes. interestingly they both see autism as a disability- not a difference.

ros talked about not always being able to queue- having to rush forwards, and lucy talked about having to touch things- needing to connect with an object before being able to see it, or being unable to be separated from that object. my son is like that too.

maddiemo Wed 04-May-05 20:32:03

I missed her when she came to our area. I heard that her talk is a prepared speech as such and does not reflect very well how she actually is. I don't know if that is true though.

baka Wed 04-May-05 20:36:40

i'm sure it doesn't reflect well- it was so well delivered that you would never guess the level of difficulties she has. even that was amazing though- talked for over an hour- with lots of tangents (which impressed me- as she's autistic) and no notes (she can't read).

mizmiz Wed 04-May-05 21:07:58

I still feel baka, that if you can explain at length why you do things that other people find odd/inappropriate (and know that other people find them bizarre), then surely you then have the insight to actually suppress/change those tics/habits?

I mean, given the choice, wouldn't we all barge to the front of the queue,tune out when something is boring,become engrossed in something which is not strictly relevant?

I'm not sure that high functioning autistic people like this do anyone any favours...feel it's a bit of a freak show to be honest.

baka Thu 05-May-05 12:45:41

but she's not high functioning- that's the point- she's severely autistic with speech as a savant skill.

Lucy Blackman's book explained it better than Ros' talk (more time I guess) but no they can't control it- because their senses and body are very much not under their control. That's the whole point.

I think it makes more sense having started to watch the RDI video. Gutstein the psychologist who started all this collates all the research into autism. He said that all the neurological research has shown that in people with autism, all the individual bits of the brain are working fine. So they can learn language, they can learn to recognise things, they can learn to recognise emotions, but they cannot attach meaning to what they are seeing and processing. The reason they can't is because the limbic system (processes emotions and meaning etc) and the neo cortex (recognises shapes/delas with language- all the higher function) do no pass information properly. He described it as being analagous to NT's having superhighways running between the neo-cortex and the limbic system, whilsts autistics have country lanes. From everything I've read by autistics referring to their sensory system it makes sense to me.

For example Lucy Blackman learned to recoognise that a circle, 2 dots and a line meant 'face' when she was about 10- but she had no idea whay it meant face. It wasn't until she was ovber 20 that she dicovered that that meant face as that's how other people see faces- eyes, nose mouth, in a round shape. To her a face was just a series of shadows. You ghave to remember how bizarre the snesory processing is in an autistic.

I'm sorry you found her a freak show tbh, as she gave me real hope for my son. Even knowing that level of self analysis is possible in severe autism (and both her and Lucy Blackman have it) made me think that one day I may be able to see the world through his eyes, rather than having to reply on people like Lucy and Ros (who have done me a real favour- as without them I wouldn't have a clue how completely upside down the planet is for him). For example at the moment he is big into throwing things- now I could just think he's being naughty- (he knnows he;s not allowed to), but actually watching him throw I realised that he's actually following the moving object out of the corner of his eye- he's visually stimming with it- he's seeing it in a way I never will. Doesn't mean I don't try and redirect him, but at least I have had an insight into his world (Lucy Blackman writes at length about visual stuff- for example she was wary about choosing one university becasue the roads and pathways were all straight and she thought there was no way she could get into the buildings because once she's on a straight road she can't stop- she knows where she should be going, but alll the straight lines overwhelm her sensory system and she can't get off ther path). She also did me a huge favour with trees- my sono will often slam the brakes on during a nice family walk and run screaming off back to the car- we worked out it was to do with trees- but didn't know why- then I read Lucy's book and she described finding herself under trees and losing the plot- major meltdown- it was to do with the angle of the sun and the shadow- meant it looked like the ground had huge spikes coming out of it, and she lost all sense of where she even was and was terrified to move.

I doo hate the idea that if he achieves as much as either of them (and he would still be severely autistic- and it is highly unlikely to happen-if it happened I woould be so amazed I would be on a permanent high for the rest of my life) that he would be seen as a freak!

The sensory system (or more accurately processing) contunually lets autis down- it's a theme they return to again and again, and knowing that I think makes a huge difference in understanding them. If you forget that you do any autistic in your care a huge disservice (sorry but I think you do).

baka Thu 05-May-05 12:46:40

I think what your saying mizmiz is equivalent to saying to a paraplegic- "you've got legs- what's wrong with you- you should be using them".

dinosaur Thu 05-May-05 13:19:27

baka - thanks for a fantastic post - really insightful.

mizmiz - what's your connection with autism?

baka Thu 05-May-05 14:10:22

dino - I'm still digesting the information that the neurological problem in autism is a connection problem between the limbic system and neo-cortex. I knew it was to do with connection problems but hadn't realised that it had been so well observed and pin pointed (which it has apparently- although only recently). It makes a lot of the problems described by adult autistics make sense (eg seeing someone's lips move but not hearing what they are saying until later etc).

I suppose it reallly is like the ananlogy of the paraplegic. If you are paralysed because of a spinal cord injury you can't move because the messages aren't getting from the brain to the limbs, even though all the relevant bits can work perfectly. Same with autism, all the relevant bits of the brain can work (which is something I also hadn't realised), just not in co-ordination with each other. I'm going to have a browse round some neurology papers soon (if I can understand them) as I really hadn't realised what a strong concensus there is on autism and its neurology.

mizmiz- I think you are perhaps thinking of autism as a behavioural disorder, and not realising it is neurological.

mizmiz Thu 05-May-05 14:11:26

Thanks baka for taking the time to write at such length. I did not pose the question to sneer or disparage,merely to seek further inside into the puzzling dichotomy between this woman's insight into her behaviour and her actual behaviour.
It is intriguing and you have made me think a great deal more on the subject, so thanks for that!

Dinosaur, I am a salt working primarily with augmentative/alternative communication and I deal with many people with autism (most not high functioning however.) I have spent the last few years fighting to have PECS introduced as a matter of course in the special schools in my area (and am very proud to say that thanks to much foot stamping, the ed. authority to date has paid for over 200 people to be PECS trained-parents,teaching staff,therapists and so on!)

One of the highs of my career!!

Baka,it is great that you ha ve been so inspired by this. I am confident that your son will never be perceived as a freak.
Merely wonder who helps Ros Blackman put her talk together. Is this her means of supporting herself?

I hope you understand that my queries are just that;queries.

One of the things I love about this field is the dizzying pace at which things much. Ideas which are cutting edge now,will be old hat once your son comes of age.

(Incidentally, about to start an MSc in ABA)

mizmiz Thu 05-May-05 14:13:25

Jusr rereading...
How exactly would you define 'high functioning' then,baka?

baka Thu 05-May-05 14:24:27

Ros Blackburn only gives one talk- she has been doing it for years. Initially it was very wooden, but she has always asked for feedback and used that to improve (dramatically appparently) her presentation.

My definition of high functioning is someone who can pretty much function with minimal support. Ros can't go out in the street by herself, can't prepare a meal for herself, can't go shopping, can't read. Lucy Blackman is non-verbal- but I would say more high functioning than Ros as she was able to go to university with a support worker . Lucy requires a lot of support, but not 24 hour supervision which is waht Ros needs. Ros started her talk by saying she was definitely not high functioning- she was severely autistic with her greatest gift (her speech- her savant skill as she described it) being her greatest disability.

Ros gives her talks in order to get money that she can spend to go trampolining. She said she wished people didn't bother to pay her, but just paid her trampoline instructor. I obviously have no idea aboutnher personal finances, but I would assume that she doesn't support herself, she will be under the care of social services and supported by a care plan (haven't got that far, don't even want to think about it so have no idea how it works).

mizmiz Thu 05-May-05 14:30:44

I remember her talking about the trampolining now you mention it.
I imagine her presentation has become quite polished over the years, which in one way is great,but in another causes difficulties as it often leads people into assuming a person is more'capable' (for want of a better word) than they actually are.

I have a daughter with a lang. disorder and am aware that a lot of people think she is being silly/shy/lazy or at the very least misjudge her capabilities and confidence.. Yesterday a woman came to my house and spoke to her,and dd turned away as she often does. The woman said loudly and rudely
'Come on, I'm sure you can say XXXXXX in English!' (We don't speak English at home.)

Felt like punching her!

dinosaur Thu 05-May-05 14:35:26

Thanks mizmiz - wow! - fantastic on the PECS front!

Baka - the stuff about neurological problems is fascinating. My DS1 is high-functioning - very - but heh stillhas difficulties with processing what people say to him, responding to question etc.

Fio2 Thu 05-May-05 14:39:34

a bit off topic but I had builders in a few weeks ago and the one chaps son is severely learning disabled and autistic and he was pouring his heart out because social services were being difficult about proving day care for their son. if not provided his wife would have to give up work to look after him. I dread those times tbh

Davros Thu 05-May-05 14:42:02

I can understand some suspicion about someone who can explain their difficulties so clearly but still not function. However, these peaks and troughs in ability are typically autistic aren't they? I would query whether Facilitated Communication was at the root or some other sort of "assistance". However, if that were the case then I think it would have come out long ago and she wouldn't be able to do what she does at all. I have no problem with FC if it leads to independent keyboard use and/or writing but if it continues to be facilitated then...... Not that I'm saying at all that this is the case with Ros Blackburn.
The other thing that comes to my mind is that my DS's greatest difficulties are due to his learning disability imo. He has classic autistic behaviour, possibly tourettes and big sensory issues. But his learning disability makes all those things so much harder.

baka Thu 05-May-05 15:06:08

davros- Lucy Blackman started with FC (with a lot of support I think) but now types completely independently. Before reading her book I hadn't realised that that could happen- I thought once FC always FC (and therefore a bit dodgy). I don't think there are many peolpe in Lucy Blackman's position though. She didn't reach "sentence stage" of language until she was 13 though.

baka Thu 05-May-05 15:07:07

Davros- ros blackurn doesn't use FC (can't read/write) she "just" talks.

MotherEve Tue 10-May-05 22:31:12

What follows is pretty self explanatory but might give some insight into the world of autism:

Brian has some other writings on his blog

*_What is it Like to be Autistic?_*

^As a way to try and convey what autism and the autistic spectrum means to those within it, I will try to describe an analogy that has been with me, as a person on the autistic spectrum, for years.

This will require a lot of time and patience on the part of the reader.

Imagine yourself in a totally enclosed room, of comfortable size, and two large screens or monitors before you, one slightly on your left, and the other slightly on your right. To the far left and far right are two large speakers.

In front of you is a giant desk with tens of thousands of control buttons that vary the views from the monitors and the sounds from the speakers, as well as being the manipulative controls for a huge malleable machine called a "body", which contains the room that you are in.

With these controls, you can move this giant machine forward by manipulating the lower supports known as the "legs" and "feet", manage a huge number of manual controls on what we call the "arms" and "hands", and do so many other things with these controls of this machine that you are sometimes lost in this metaphorical maze.

You get to know the controls very thoroughly, over time, in how to turn the "body" around, sit it down or lay it down, and even turn the monitors and speakers off while the "body" is relieved of its burdens that you put through it every day.

However, there's one basic problem with this giant machine: You cannot control very precisely the amount of input you get via your monitors or your speakers, and often you feel as if you are starting to go either blind or deaf or both. Also, you get messages from outside sources constantly telling you (not asking you) how to handle your controls on this giant machine.

As you place this machine in an upright, but relaxed position, known as "sitting", you have the machine pick up a book containing a picture that you would like to study through the monitors, and you have your audio receivers tuned to some melody that gives you comfort.

Suddenly, a message comes through the speakers: "Put that book down right now, and get back to your assignment!"

This throws you into a tailspin, as you feel that you are exercising your own self-control, when this outside source is attempting to take away this self-control.

Why should you get back to what this outside source says is your assignment when you have to search through your database to determine just what was spoken to you, previously to this, in determining your assignment? This altercation with this external source cuts off the picture-viewing that you were just doing.

You are lost, and to add insult to injury, the monitor control is taken away from you, momentarily, as two large video cameras (know as "eyes") that some other giant machine has, are placed right in front of your monitors, one camera for each monitor.

You ask yourself: "What do these cameras have to do with my picture-viewing or getting back to my assignment?"

You try to turn your monitor control to the left, right, down, or on some angle, so that you can have some other, albeit, scattered view to let you get off the subject of these cameras and on to what you were doing previously (looking at a picture), or even to what the outside sources told you to do.

This leads the speakers to get into a much higher decibel rating, with words coming though them that say "Look at me when I am speaking to you!"

"Look at these 'cameras'?", you wonder. Again, you see no connection between these cameras and the pictures that you were looking at, or the assignment that you were told to do. You start to turn on your screen saver to keep your monitor from having the steady outline of these cameras moment after moment. You have no idea of how long this might continue.

With the screen savers on, you still are overwhelmed by the sounds coming through the speakers, and try to turn the volume down. This only leads to more problems, in that you were listening to that comforting music, but cannot hear it with the lower volume.

You have no idea of what to do next, and start to hammer at the control panel. This might result in moving the "arms" towards the room you are in, to see if this is a problem in the "imagination" of your computer resources. Also, you might turn on a control that alternates your left (or right) hand up and down, repeatedly, to try and show that you are attempting to "fan" away the intimidation that seems to be surrounding you.

With things only getting worse, you are ready to open up your own sound box, and issue words to your environment that say, in fact more than fantasy, "Leave me alone!"

Many times, this does work, but many times it does not, and your empirical responses are lost as to whether to do this again, or to try something more emphatic next time.

One thing is certain: You would rather have this giant box, that you are in, have full self-control of its manipulative and malleable features, rather than have outside sources tell it what it must do; when you have, seemingly, no say at all in how other giant machines around you are controlled (however common or "normal" the controls might be in these other machines).

Finally, one day, because of the methods you used to express your own machine's autonomy over those who were constantly trying to take control of your machine away from you, you are told that your autonomous position resulted in a description of your machine by these other machines. That description was called autism.

You are probably saying to yourself, "What has self-control got to do with autism? I was only trying to control my own machine as best I could. Should I take this new label, of autism, as a criticism or as a compliment?"

That is where you are today, still searching for your place in this non-autonomous region of life where you still have one main purpose: to exercise your autonomy with your own self-control.

Do you have any hint now, of what it is like to be autistic?^

Brian Henson ©2004

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