Ros Blackburn

[mandyque]

Just got back from a seminar by this lady and it was fantastic! She is severely autistic like my dd, but has been able to talk since around the age of 13. She is still in nappies in her mid 30s but can deliver talks and go on for hours about what autism is to her and what she sees of our world.

 

It was so fascinating and informative, I felt guilty as hell when she ranted that she HATES the current policy at theme parks (which I wholeheartedly embraced ) of queue jumping passes - oops! She said it is far better for parents to endure the tantrums and tough times because autistic kids NEED to learn that queuing is essential in life and they can't always go to the front of the queue. She said we should approach it thinking 'yes you have to wait and no you don't like it, but this wait will end and you will get a treat at the end of it which is worth the queuing, i.e. the ride. She said it's the perfect situation to use to help train those thoughts into an autistic child because of the great reward at the end, those sprouts you have to buy at the supermarket aren't half as enjoyable as a fairground ride after all, but at least the groundwork is done that they need to learn to tolerate queuing!

 

I was reassured that another thing I do with dd is right though, she said in real life we NEED to learn to talk, to express our needs and feelings, and PECS and sign language won't satisfy that need in most situations. I already believed that so the confirmation was good, once dd knows the word for something I MAKE her say it before she gets what she wants, signs and PECS are good to a point but what she needs is the words. DD is lazy sometimes and will just hand me her cup but I wait and ignore the cup until she says what she wants, because she needs to learn that not everyone understands that she wants a drink if she hands over an object. Ros said that she has experienced times when she didn't know how to ask for things, has handed over a PECS symbol and was handed it back with the comment 'oh thats a lovely picture'.

 

She also made us think about how they see things, autistic people have the same feelings as we do and can learn love and emotions, just they don't understand that we show them in different ways. She said if she is afraid or angry or happy, she will jump and make noises and wave her arms, because each of those emotions has a similar physical reaction, adrenalin rushes, heart beating faster etc. and a person with autism doesn't recognise the need to show each emotion in certain 'socially acceptable' ways which make others understand what she is feeling. She also made us realise that what she does is just the same as we do, just in different situations, for instance, what do people do at football matches? They get excited, they jump up and down and make noises and wave their arms around! If we go out clubbing, we dance around doing similar things!

 

So much of what she said made perfect sense and I totally related what she was saying to my life with dd, I've definately got a LOT to think about now!

[Brook]

Hi,

 

I've been to see Ros Blackburn talk a couple of times, I agree she certainly gives you alot to think about. I found her talks very interesting and alot of it helped me to understand things better.

 

Brook

[alibaly]

I think the important bit here is that she talks about what 'her' autism is. Maybe she can wait in line at theme parks, what about the children with sensory issues who can't? My son would be very uncomfortable if someone stood behind him especially if there was a danger of them coming into contact with the back of his neck, in fact he'd do a fantastic impression of a turtle but it wouldn't be funny. If she doesn't want to use the special passes then she shouldn't but she should accept that for some they are a god send. I can understand that those on the more able end of the spectrum do not want to be seen as 'disabled' for want of a better way to put it but those who are at the severe end of the spectrum are disabled and deserve special concessions.

 

How does she feel about the likes of 'blue badges' for parking?

 

Re your last paragraph Mandy I'm surprised she felt the need to explain those things and as parents shoule we really need them explained? I think its thekind of stuff you suss out for yourself very early on into things.

 

I'm glad you enjoyed it though

Edited September 28, 2005 by alibaly

[lil_me]

alibaly - I think you also have to remember its not only parents who attend these seminars, and not all parents have the knowledge or understanding yet, I didn't at the first seminar I attended and my son was 5 then. The basics are as important as the rest.

Edited September 28, 2005 by lil_me

[alibaly]

you're absolutely correct

[lil_me]

I must agree my son would detest having to wait in queues with other people, but without working through these issues I feel he will always have a problem with it. We are working through the queue issue now and we get some funny looks for going to the till in the supermarket with more people waiting, but he's improving every time.

 

Saying that I also disagree with the 'severe' 'mild' 'moderate' grading people try to give autism as they all have specific difficulties, it is a disability regardless of the labels of how severe, they should all be entitled to the same support where required and have the choice if they wish to use it or not. Some parents will choose to, some won't.

[mandyque]

I understand what you are saying alibaly but this was indeed from her point of view. She was talking about how her parents persisted with her despite the tantrums and distress because they believed she needed to learn to tolerate these things and she was grateful to them for teaching her that sometimes she simply has to cope whether she likes it or not. I couldn't do without the fast track passes and blue badge because I can't cope with her behavioural difficulties and of course it makes life easier for us, which is why most disabled friendly measures are in place.

 

The seminar was attended by a wide range of people, professionals, parents and other interested parties, some of them didn't have the understanding that we do, and even after over 6 years of knowing my daughter with her diagnosis I am still learning every day. This kind of insight is invaluable to me, to make sense of what is going on in the 'autistic mind' and understand more about what my own child may be going through.

 

She also explained the differences, in her mind, between autism and aspergers syndrome, that there are many similarities,but that people with aspergers tend to want to fit in, to want to be sociable and have friends and the like, where people with autism tend to find being alone makes them happier, to be able to focus on their own interests. She did warn that some of her views were seen as controversial so people may or may not agree with what she says, but in the end she is an individual with her own opinions and told it the way she sees it.

 

Finally, she recommended that we all read Mark Haddons 'The Curious Incident of the Dog in the Nighttime' and if we have already read it, go and read it again!

[Brook]

When I heard her speak she also mentioned the fast passes, she said 'obviously these things wont happen overnight, they take steps at a time, but that these things which her mum taught her, have been invaluable to her.

Also her mum took her into different situations ie.. the cinema and the cinema again to see the same film, only the next time she deliberately took her when the film had started, so she could teach her what signs to look for if you arrive late, ie.. its dark, the people are quiet, they are sitting down etc.. as Ros says it takes her a lot lot longer to sus out a situation in a room than it does for us, she is amazed at how we can sus a situation out in seconds, she says she has to piece it together, hence, the reasons her mum took her into the same situations at different times, this is why she mentions the fast passes, she feels that it does not teach the dreaded 'waiting'.

 

I do see her point and it makes very good sense, but I also know that it's certainly not an easy task.

 

Brook

[smallworld]

I can understand the point about needing to learn to wait, and my son (5) is getting the idea of queueing gradually. My big problem is not queues but waiting rooms, he's got the idea of waiting in line (school do a lot of this !) but sitting in a place with lots of other people is too much.

I was contemplating ringing the docs and asking how we could avoid this situation (it's a turn up and wait set-up) I know that this is one place where I can't introduce 'waiting', he's sat in a room as far as he's concerned. Any suggestions ?

Sorry, yet again I've hi-jacked a thread, feel free to ignore me !!

 

wac

[bid]

I think I may have heard Ros Blackburn speak about 10 odd years ago??

 

Does she love ice-skating??

 

If it is the same woman, I remember I felt very uncomfortable at the time with some of the things she said her parents had done

 

Of course, it could have been a completely different person!

 

Bid

[alibaly]

Bid, thats exactly how I feel about some of the things the parents did. I haven't been to one of the ladies talks but have, over the years, come across her story being discussed on many lists.

 

My son is very good at waiting but it wasn't always like that , in fact he is really patient but if I had subjected him to a 2 hour long line in a theme park in order to teach him how to wait, I'm sure it would be a very different story. For me that would have been bordering on cruelty, its almost as if the line itself is being used as an adversive, and I must stress I'm talking about the lines in theme parks.

 

I do however take my hat off to her parents for introducing her and teaching her how to 'be' in as many different situations as possible, its what we have always done and it has worked really well.

 

Hello Brook lol

[madmooch]

I saw her a while back and alot of what she said I totally disagreed with like when she said autistic poeple should not claim disability, they should go out and get a job yeah right, how many poeple with autism can cope with life never mind a job hers isn't a proper job, A few talks now and again

And I hope all the professionals listening to her dont take what she says as gospel.

[katkin]

Waccoe, some docs will put you on the "home visit list" so you do not have to go to the surgery at all. It's worth asking as can save a lot of stress both for you and small person.

I too have been to hear Roz Blackburn speak. It was very interesting but I did feel vaguely voyueristic - almost as though she was an exhibit (sort of elephant man thing) I had vague feelings of all people there trying to get an insight into the autistic mind as though it was some kind of phenomenon. I comforted myself that she must like what she does or she wouldn't do it but I don't think I would go again.

Credit to her parents but obviously some of the strategies they employed would not work with a lot of children. I think the majority of professionals recognize this - I don't think we will see people being forced to queue in all theme parks next summer!! love kat

[lil_me]

Waccoe, have you tried a WAIT card ?

 

My friends son has a WAIT card we introduced a while ago, it has WAIT written in a circle on an amber background (I say amber but its orange, used as its like traffic lights as he has one for STOP that is red). Every time he's in a situation where he must wait his turn he is given the card and he holds it in his hand, when its his turn his Mam or whoever is with him takes the card off him, to signify the waiting is finished. They started using this with games, then small queues, when waiting for food anything he has to wait for, and now she doesn't have to use it as often, just in places like waiting rooms, shop queues etc etc.

[smallworld]

Thanks for your ideas,

I was told our docs no longer do home visits unless you are physically housebound,really I'd just like to be able to ring and forewarn the surgery that we're on our way, and could they make an exception and put my son on the docs list over the phone. It's problems like this that a HV would be a help with, we no longer have one cos youngest is 5.

I will definitely try the 'wait' card, he has pecs at school so they may already have the right symbol.

 

wac

[mandyque]

Bid, yes it is the same person, she loves ice skating and trampolining.

 

I did wonder whether she is ok about doing the talks when she was talking about her leisure time and she said she would say to her carer 'no auti talk no auti talk' but that of course could be just her making sense of what day it is, it's not an 'auti talk' day ie work day, it's a day for her to have fun.

 

She was very determined that she had to overcome some of the things which bothered her, at the end of her talk she said that she hated clapping but that she had to learn to endure it so she warned us that it was ok to do it and she would cover her ears and learn to get through it. I think it is good that she realises that some of the things which we do must be tolerated by her so that she can cope with the world, although it was obvious the audience were waiting for a cue as to whether they were allowed to clap and would have not done so if she had said she preferred it if we didn't.

 

She didn't talk about the DLA thing yesterday, that is one thing which I don't agree with, people with autism are disabled and are entitled to DLA. There are things in place such as Disability Working Allowance for those who are able to work but it needs to be understood in society that a lot of autistic people can't work.

 

For me, taking away the fast passes would mean that we didn't do theme parks any more though, I really couldn't endure the meltdown attached to waiting in queues! Sometimes it's nice to just have a lovely day out without having to deal with the more difficult aspects of autism and without feeling obliged to give therapy or teach them something all the time. Kids are kids in the end and they are all entitled to have fun, relax and play as well as learn.

[oracle]

I attended the same talk that Madmooch attended and I felt most uncomfortable about the comments Ros made, because 80% of the people attending were professionals from our Service Providers While I understood that she was talking from her own view point how many of the professionals who have a very limited understanding of ASD would realise this?

 

I did find her entertaining and wonderful to listen to but very worrying. If everyone with an ASD decided that they would make their living from talking about themselves then how many would actually be employed?

 

I know that quite a few parents in our group who attended left the building feeling inadequate and that they were doing it all wrong. Because like has been said parents who are new to ASD were also unable to see that it was the point of view of one person with autism.

 

Ros is inspirational but we also have to be realistic to when we listen to anyone giving an account of anything.

 

Carole

[Kathryn]

Agreed with everything said so far. I have never heard RB speak but I know she ahas been to a venue near us and I have been sent info about her talks by the senco from my daughter's old school.

 

It's interesting that she is assumed rightly or wrongly to be a mouthpiece for all people with ASD. Would we make the same assumptions about a blind person, or someone with cerebral palsy if they chose to speak about how they cope with life?

[UltraMum]

I'd just like to be able to ring and forewarn the surgery that we're on our way, and could they make an exception and put my son on the docs list over the phone. It's problems like this that a HV would be a help with, we no longer have one cos youngest is 5.

Waccoe - I went to a seminar y'day in Wakefield run by Special Abilities and they mentioned that if your child has a disability and is over 5 you can still enlist the services of an HV.

 

The NHS Careers site says this under 'Health Visitor'

 

As a Health Visitor, you will undertake a range of work.

You may be working with mothers of young babies - advising on such areas as feeding, safety, physical and emotional development and other aspects of health and childcare.

You might also work with people of any age who suffer from a chronic illness or live with a disability. Your role here will include helping them to overcome difficulties they may face in coping with their illness or disability.

 

Worth ringing them up?

[mandyque]

Agreed with everything said so far. I have never heard RB speak but I know she ahas been to a venue near us and I have been sent info about her talks by the senco from my daughter's old school.

 

It's interesting that she is assumed rightly or wrongly to be a mouthpiece for all people with ASD. Would we make the same assumptions about a blind person, or someone with cerebral palsy if they chose to speak about how they cope with life?

Good point! I don't know two autistic children who are the same so that is worth remembering.

[baddad]

Just a thought, but for most of us our life's ambition is to meet just ONE person who will really know and understand us...

Seems odd, then, that we try to understand something as complex as ASD from the testimony of one (or a few) individuals, and that many seem comfortable to accept that the experiences of one person with an ASD will be relevent or pertinent to all.

We are all individuals, ASD/AS/NT notwithstanding, and that's what makes the world go round...

Can't comment whatsoever directly on Ros, 'cos i know beggar all about her. What I would say, though, is that her story may be helpful to some and totally irrelevent to others. To those in the latter group - well it's no biggy, but for those in the former it may be life changing.

Not sure what I'm trying to say: think it might be another varient on that old chestnut 'walk a mile in my shoes'...

Laters

BD

[Lucas]

I wonder if Ros Blackburn has had a 'real' job ever? I suppose I could make a lot of money myself going on the road, talking about Autism and contradicting everything she says.

 

I at least do try to make an effort to seperate what I know from what I believe. I hardly ever prefix a claim with 'I think', for the reason that I KNOW. I have very few grey areas after all I have read. Examples,

 

What I know:

 

Vaccines do not cause Autism.

Social/Biological enviromental triggers do not cause Autism.

The impairment in Autism is not known but assumed.

Autism causes no involuntary behaviours, but causes other responses to be atypical giving the illusion that Autism is causing them.

Autistics do not 'switch off', we must always be thinking about something otherwise our sensory input multiplies to fill in the space and prompt thought(a bit like how meditation works, the sensory rush stimulates greater thoughts when normal thoughts are absent).

The spectrum does not exist.

 

What I believe:

 

The cause of Autism will never be known. The answer most likely leads to God or the meaning of life itself.

The cause/cure will be repeatedly 'discovered'(as it has already) and promoted, with a brief period following where many people think Autism has been cured up until the point one 'cured' person regresses.

There are different phenotypes of Autism, however the way they seperate Autistics is so trivial as to have no effect on how they are treated.

Ros Blackburn has had less than two real jobs and will likely never have one again. I would not trust her to raise an Autistic child unless she acknowledges she doesn't know as much as she thinks and broadens her experience.

 

Now I need to actually read up on Ros Blackburn because some of the things she seems to have said are vulgar and bound to ruin the lives of some people. Thank you Ms Blackburn for your contribution to harm.

[baddad]

Lucas -

Just a quickie, but around half of the things you know to be true i know to be wrong. That's what's called a diference of opinion. Opinion is subjective (and so, come to that, is 'truth'). you can argue til you're blue in the face that autism causes no impairment, and 'co-morbid' those effects right out of the ballpark as much as you want, but the issue of cause and effect is largely irrelevent... we're all here trying to deal with the consequences.

Please don't accuse people of causing harm because they hold a different opinion to you: that offends me. She's speaking her 'truth'...

For what it's worth, I'd defend your right to your truth equally. There's only ONE person who knows the whole truth - IF He/She/It exists! - and He/She/It isn't telling... [NB: If you are making any claims in that direction, I'd really rather not hear about them!!]. The 'truths' that each of us hold are the sum of many parts - we sift the evidence and decide who's evidence we choose to accommodate. For every piece of 'evidence' there will be at least one person who either challenges it, or who interprets the 'meaning' of it in a different way. History has shown us that often that challenge arises from one voice alone, which is vilified and rejected in it's own time but becomes the voice of reason in some subsequent era. often, it takes another lone voice and several more decades for that 'new' voice of reason to be over written...

L&P

BD

Now I've got to go and do the shopping; possibly the only other 'certainty' next to those old chestnuts 'death and taxes'.

[mandyque]

I can see how Ros's comments could be seen as wrong by a lot of people, like I said earlier the fast pass thing to avoid queuing is essential to many of us, and probably completely irrelevant to others. Like you say Baddad, she is giving us HER reality, what SHE thinks, HER opinions and of course she has learned everything she knows from her very strict parents and carers who she trusts to always have her best interests at heart. Some of the things her parents and carers do with her would be completely unsuitable for another person with autism. Some of the things she is obsessed with could frighten another person, for instance she loves feeding ducks, some people would be afraid of ducks.

 

I'm not sure if there will ever be a cure for autism, or whether autism should be cured in fact. To me that would mean reprogramming the whole brain to think and work differently, therefore changing the person you are. I don't want my daughter to be different to what she is, I love her as she is. If I can help her cope with her problems, some of which are caused by her autism, then yes I will try to do that, but curing.... no I don't think so. Can you imagine the consequences of changing someones mind? Post traumatic stress? Mental illness due to suddenly being thrust into a world you don't understand, a world you never knew before?

 

I don't think Miss Blackburn is trying to do harm doing what she does, maybe some of her opinions are wrong, misguided, misinformed or simply just badly thought out, but I believe she genuinely wants to involve herself in autism awareness, to help those of us who don't know what it's like to understand, and also help the people with autism who can't express themselves.

[Lucas]

Apparently science disappeared some time today around one o'clock; as truth no longer exists and is now an entirely subjective concept. Rubbish. Reason ceases to exist when obvious, self-evident premises of truth do to.

 

I seperate what I know from what I believe based on the fact that what I know has overwhelming evidence to support it which has always been ignored and never effectively challenged objectively, what I believe is something which can't be proven either way as the evidence doesn't exist.

 

I'm tired of argueing with ambigious, relative and contradictory bull which can't be argued with(as an arguement is defined by being a set of logical counter-statements leading to a definitive conclusion). "Any excuse will suit a tyrant" comes to mind. We'd still have a flat-earth society keeping us in the dark ages if what Baddad said was actually true; an arguement would never be won by a person who is right, just the person who is most popular.

 

Grr! Panda smash!

[baddad]

The 'truth' tends to be whatever the majority of people believe at any given time. it may not be the absolute truth, but that ceases to matter if everyones treating it as though it is...

Truth is relative:

If four people witness the same accident at the same time, and are then immediately taken off to give an account of what they've just seen, it is likely that you'll get four different interpretations of the same event. None of them are 'lying', it's just that their interpretation of events will be based on a personal perspective, both at the time of the incident and the sum of their experiences up to that point. If a camera was filming you might see exactly what did happen, but depending on the angle you might not see all of what happened. By cobbling all of the accounts together you get an 'accepted' truth.

If you look at, say, Darwinian theory, you see a good example of this. When he first put forward his theories the accepted truth was big G, J.C., and old spooky...

Years later, big G.'s hold over the masses had slipped somewhat, and Darwin was teacher's pet... Then someone said 'But what about the bat?' he couldn't have evolved by natural selection, because each of the component parts of his navigation system was useless without the other ones. There must have been either a quantum leap, or he just popped up fully formed"...

There are fundamentalist out there, Lucas who will still tell you that big G. is the only truth; and that any dinosaur bones we dig up are just there to test our faith. That's their truth. It's not mine. What I can say, is that I cannot tell you with 100% certainty that they are wrong: I can only say that I am 100% convinced they are wrong. Either way, I would not want them to beat me over the head with a stick for not agreeing with them, and i certainly wouldn't go out of my way to convert them to my philosophy either (mainly'cos I aint got one!).

One thing history has seemed to show is that today's 'truth' is tomorrow's bin liner...

Really, I guess what i'm trying to say is disagree with Ros (or me, or anyone else) by all means, but challenge what they say, not their right to say it...

"Thankyou Ms Blackburn for you contribution to harm" does not help me to understand your POV whatsoever. It just sounds like a personal attack.

L&P

BD.

And as for that 'Panda Smash' - shame on you!!

[Lucas]

I already said that I don't want ambigious, relative and contradictory statements. It's a shame I'll never be able to escape it.

 

Truth is NOT relative. If something is relative it cannot by definition be true. Opinions are ancedotal evidence, but if they are elevated to the status of some form of truth, it demeans and reduces actual truth.

 

If anything you just said was true, then you wouldn't have been able to write it because the laws of mathematics, conductivity and electricity would not be able to make your PC run unless the majority of people were of the opinion that they are true.

 

"Thankyou Ms Blackburn for you contribution to harm" does not help me to understand your POV whatsoever. It just sounds like a personal attack.

 

What I mean is that I want Ros Blackburn to come wipe my ar*e when I get to the stage where I can't do it myself because everything she says will influence how I and others are treated.

[smallworld]

mathematical 'truths' are just that, isn't 2 +2 always 4 ? (just stopped typing to check !)

You can't apply 'truth' in the same manner to society, there is no absolute truth, it's all subjective.

Lucas, you'd have a ball in a philsosophy class, I think the logic module or semantics would be good starting points.... or maybe leave the best bits 'til last.

This is only my opinion of course

Edited October 2, 2005 by waccoe