BBC 1 tonight. Tue 28 Jun, 22:35 - 23:15

[nellie]

BBC 1 - tonight Tue 28 Jun, 22:35 - 23:15

 

ONE Life

 

The Twin Who Could Only Scream

 

Twins Thomas and Aimee were conceived by IVF and both developed at a normal rate, but at 18 months, Thomas regressed. He lost the language he had acquired and slowly retreated into his own world, ceasing all communication with his family. Four years on, Thomas is severely autistic. He screams and shouts and cannot speak.

 

His parents felt there was little hope for him until they came across the Son-Rise programme, an American treatment for autism. Parents create a distraction-free play room where they can work extensively with their autistic child. By copying their child's play, parents hope to enter the child's world with the aim that the child will reciprocate and slowly enter their world. ONE Life follows Thomas' parents as they embark on the Son-Rise programme, determined to give their son the best chance they can to learn to talk.

[lynyona]

Watched the program it was really good. lynn

[Alli]

Currently trying to find out if this programme can help teenagers with A.S. who are exceptionally able. The Son-rise team say that they can help children with AS but I thought that they use ABA and that this was aimed at younger less able children. I'm v. confused about it. They have offered me a twenty minute free consultation, not sure what to do. Heard it is mega expensive too but can't seem to find out how much. My son is 15.

 

Alli

[Infojunkie]

To all who may have watched this program and be considering son-rise:

 

Please be aware that the son-rise approach involves forcibly imprisoning children in their playrooms by locking the door and refusing to allow them out during the 4-hour period everyday, no matter how distressed they become. I do not believe this aspect of the program was fairly or accurately portrayed in the documentary - there was a single shot in which you could just about see the door being bolted, but otherwise this was not mentioned.

 

I would also argue that it is possible to teach an autistic to act NT and that this is what the program does - regardless of how stressful and unpleasant that may be for the autistic individual in question!

 

There are undoubtably elements of the program which are great and totally fine, such as the idea of joining in with a child's autistic behaviours and interests. But son-rise is a profit making organisation who are now using this tv program as the excellent free advertising that it is by featuring it prominently on the home page of their website.

 

These are my personal views and I would not try to stop anyone doing what they believe is best for their child but I wanted to ensure parents considering this have access to ALL the information.

[tizzmeclare]

Hi Guys,

 

I watched this programme the first time it was aired, roughly six months ago, and I thought it funny to note this evening's screening did not show how the couple got on in America, which was shown on its first screening.

 

I've no idea why they edited it out in this viewing? or why the couple appeared on GMTV this week, which along with the presenters suggested this was the first viewing of this programme?

 

Tizz

[Lucas]

Raun Kauffman who used to say he was 'cured' by this method(now pretends he believes he's still Autistic just to hang onto any credibility) and is a vocal supporter(and salesman) of Sun-Rise, is also a jerk.

 

That is my answer to everything. If a jerk is involved, don't go near it.

 

ABA: Lovaas is a jerk.

 

Chelation: J.B Handley is a jerk.

 

Sun-Rise: Raun Kauffman is a jerk.

 

How much convincing do people need?

[caroles]

Not long ago I watch a program in teachers t.v. ,about the program,the boy Jordan was called was profundly autistic and he really make a enormous progress in just 6 months ,but is true for what is was said involved putting the child in a room,with little things so the child no get overstimulated and starting at his level of learning,it was very spensive,the trip to America for a hole week in the centre was about 2000 ,or something like that,that boy maked a hugh progress just in that first week,so then they have to have a room,where only one adult at a time stays,and follow their method,in the U.K,they said it was 8 hours a day so they have to have voluntares every 4 hours ,or something.So the involvement is hugh ,make a room,the playroom,travel expensives to america,the centre fees,etc.and you have to have volunteers ready to work with your child too,is an intensive one to one.I think the program can work,specially for children with sensory overload,as that way they only take one little bit at a time and their senses don't became overload ,so they can start learning at their own peace,but I think that the centre is trying to make a profit out of it as is so expensive,.I can't remember what learning theories is based on,but they didn't invented it,althought they said they did,so if reading the theories,etc would be O.K using that approach without having to go there,or paying them as this not their invention

[Elouise]

I too saw the program with Jordan. That is the main reason I dislike what i saw about sonrise.

 

I would fight anyone who tried to inflict that upon me, my sister or any my children.

 

All I could see was a little autistic boy who had learnt to be a performming parrot.

I did not see a little asd boy who had been taught any skills to help him survive in the big bad crazy world of unpredicatability.

 

In its pure form I consider sonrise to be abusive pure and simple.

 

I dislike the one size fits all approach *ugh* every single one of us who is off the beaten track in this house is an individual and we respond differantly to differant ways of dealing with us.

 

I think you can guarentee how we would all respond to sonrise.

I would be the one helping my kids to plot an escape and head for the hills.

*dark mutterings about the evil old holding theraphy is back wearing a more acceptable face*

 

Sorry. Anything that forces someone with ASD to pretend they are 100% normal makes my teeth go on edge. I spent years trying to do that and it drove me to the edge.

Being allowed to be 'differant' to everyone else is better far far better and I will fight anyone who tries to make me and mine into 'poodles'.

[asereht]

I watched the programme and I don't think it would be something I would have tried if I had been given the choice years ago had I known my son was AS. I would certainly not use it on my 14 yr old son now.

I thought they were trying to make the child into someone he wasn't.

 

The comment from his 4yr old twin about him forcing his autism out was praised by the mother but there is no way the 4yr old girl came up with that herself even though it was implied she did. I was shocked at that statement.

 

T

[mossgrove]

I have it taped for watching tonight but I have to admit that the trailer got my back up when it referred to grabbing the opportunity to recover from autism.

 

I remember seeing a similar documentary a few years ago when a child underwent similar therapy (I think it was ABA without the Son Rise, but it was pre-diagnosis for our own kids so my recollection of the terminology is hazy)

 

On that occasion a non-verbal autistic child (verbal as a toddler but had regressed) was given very intensive therapy for several months in a specially-build annex to the house. He resisted this treatment fiercely at first but eventually learned to speak and was integrated into his local primary school.

 

Even before I knew anything about autism the documentary made me very uncomfortable for several reasons:

 

The child evidently hated the therapy, even at the end he appeared reluctant.

 

'improvements' (if they can be seen that way) appeared to be transient and the child quickly reverted to his former self when therapy stopped for any period of time.

 

At the end, even when integrated into the local school it seemed to me that the boy lacked even the most basic skills, all he appeared to have learned was some specific responses to specific cues, and you sensed that any new situations would have sent him into meltdown.

 

I was left with a feeling that the therapy was as much for the benefit of the parents who wanted their pre-regression child back, and what they got was, as Elouise put it, a performing parrot.

 

It's not an easy subject. If you are the parent of a non-verbal child who is very difficult to communicate with then therapies like ABA and Son Rise must have considerable appeal, but careful though needs to be given to what the motivations are, and what the desired outcomes are.

 

Simon

[karin]

hi all read your posts on the programme did not want to watch it as i have twins and the trailer made me cringe by the locking up of a child someone mentioned regression can anyone help my twins are very good in school but when they come home and write or type on the computer their spellings have gone to pot and their writing do you think they are going back into aspie mode as tony attwood said in his book be aware of 2 characters the children who conform to school life but will revert back once at home does anyone think this is true? i do im sure my twins do this all the time i think thats why the school says they dont need any educational help although twin2 has gone from doing 16spellings a week to 8 as i think he cannot cope with it please e-mail me back would love your thoughts on this keep smilin luv karin xx

[Elouise]

IF I have understood what you are asking correctly (sometimes I miss what is implied)

 

Do not panic.

 

All of mine work hard at school and crash thrpough the front door in various stages of frazzled.

The oldest does a kevin the autistic teenager collapse armed with food; manga commics and lord help the person who even says hallo untill he has spun everything he can get his hands on.

 

Jo slams in screams in a cushion kicks her homework into a corner and slams upstairs and I do not see her for an hour.

 

Sam walks in like a robot insists on toast just so; the expected TV program on and do NOT talk to me; look at me be NEAR me.

Annie just comes home crying from frustration and curls up with her collection of teddies. Annie seems to have a nasty mix of dyspraxia and dyslexia and she has not learnt a new spelling even for a three letter word in over a year. poor kid.

 

If you get down to Annies level of maybe one or two spellings week after week rather than the occasional poor weeks due to say new words or tricky spellings or 'stuff' at home meaning you cannot practise with them.

 

Its not only her Annies spelling thats dreadful her handwriting is awful. It looks like a three year olds.

She can draw in detail if its a picture but resorts to a p,almer grip for writing

The words are not on any lines they float all over the page.

She will take a stab at the [age to get the first word down and its more luck than judgement as to which direction her writing goes next.

She reads the pictures and was discovered memorising the story because she could not read the actual words.

Her lingustic skills are at the level of a nine year old her written are

She cannot tell left from right; up from down; if left to dress herself looks like a scarcrow in a high wind.

I shall not even comment on her maths. She is still at one two many LOTS level.

Sam keeps trying to teach her seqencing.

 

All of mine with the exception of Annie who just keeps plodding on go thorugh phases of wanting to learn new stuff like crazy; then they hit a wall where they cease learning and shut down for a bit. This can last for a week or so or in Nathans case WEEKS; MONTHS even; then they begin again.

Its almost as if they need extra 'downtime' to process everything to date before they can begin to learn again.

My old school reports show the same sort of pattern as do my sisters. Downtimes appear as failing to learn or losing what is already learnt rather than 'sorry the body is here...mind busy elsewhere'

[lynyona]

karin this was definately the case with my son when he was at school, i always referred to the school kieran and the home kieran, while he was angelic at schoolgot on well with his work,going to the parents evenings we sat in awe that they were talking about kieran lol he did go to a special school i may add but as soon as he ihit that threshold he turned into the child from hell. He s 19 now. lynn

[Lucas]

I actually missed the programme, but someone else who did watch it says that the boy in question didn't actually scream until after the therapy started. The wonderful sensationalist media.

[caroles]

IT's clear they are doing it for the money,as is so expensive ,my son he has sensory problems and he learns the best when is quite and one thing at a time,but is not nice if the child hates it,and you are forcing the child,would be like being in prison I suppose,I think it depends on the child if is happy or not with it ,but 8 hours is just to much,maybe 2 hours a day,if the child enjoy it is o.k as it can be like playing,so the child can learn some form of communication,,as that willhelp i child enormously,sometimes the senses in the children are not working properly,dislike noises,can't make sense of what he sees ,hear,smell around them,and if they have little distraction no overload of the senses they can understand step by step,so some one to one is good but no in the same way,and starting at the child level is good,and trying to go a little step further,each time.

[Zemanski]

I don't like son-rise for all the above reasons but last week I went on a course on Intensive Interaction

 

it has been developed by a group of S&L therapists and psychologists and is being used in schools in our area

 

Intensive Interaction is used with children and adults with all sorts of learning difficulties but mainly those with social communication difficulties.

It is about entering the person's world and starting from where they are at. The idea is to let the person lead and to follow their need for interaction on their terms, slowly building their skills, mainly through play.

The person is respected, the interaction is intense one to one but not intrusive and the sessions are stopped if the person is not willing or signals (usually by withdrawing cooperation in some way) that they have had enough.

 

I have seen video of it in use both with autistic children and with children with profound physical difficulties.

The play was lovely; watching one child in a wheel chair playing hand games with her therapist with her eyes lit up was delightful and seeing another child with autism who started his first session with no cooperation or eye contact beginning to actively play with his therapist within this one session was stunning. At the end of the second session the same child, who was non-verbal, was trying to sing!

The first clip we watched was of a child I know and the next day I happened to bump into her with her mum and asked her about it - she has been thrilled with her daughter's progress and uses the method at home with her as often as she can because they both enjoy it so much. She said she now feels she has a more rewarding relationship with her daughter and that she is happier and less frustrated since she started the sessions.

 

On the course I asked about people with AS and the therapist said they have started to explore this and that as long as you can find a good starting place it should be equally applicable as it is about forgetting age appropriate learning and filling in the gaps - going back to baby hood and toddler play in some things but still respecting the high levels of progress a person might have made in other areas. For example many cildren with AS and dyspraxia don't learn to crawl, missing out a vital area in their development so to help them with their physical development you might go back to rolling around on the floor and low level play (providing they are enjoying it).

 

apparently they are finding that children using this therapy are becoming calmer and more able to cope both at home and in school. Also as they progress the class teacher or LSA takes over under guidance so that the child builds a strong relationship within the environment and feels more able to communicate their needs and fears so autistic children in particular are having fewer frustrated outbursts.

 

apparently the biggest barrier to using it in school is the paper work - you can't plan sessions and fill in IEPs in infinite detail and schools these days don't like that!

 

I think it is definitely worth looking into if you are interested in son-rise - I would say it is far less likely to inhibit the child and certainly isn't designed to impose anything on them, and it might be available through schools or S&L therapy services free.

 

It's quite a recent development so I'm not sure how widespread it is yet.

 

 

http://www.intensiveinteraction.co.uk/

 

Zemanski

[helenl53]

Hi All,

 

I am very sceptical of people who say they have been 'cured', then going on to make some big bucks out of it.

 

The whole philosophy of our forum is sharing and we all do this willingly and somehow I am not comfortable with people making lots of money out of peoples dreams. Fair enough to earn a living - but the amounts we are talking about are pretty obscence.

 

What I am staggered by though, is that my LEA fund Son Rise for a child in our borough and provide the support staff to operate the method - don't get me wrong, I would deny a child nothing - but there are no adequate training courses for ASD's for the teachers and support staff in the schools but, money for Son Rise!

Mind you, and I know someone will enlighten me, is there not more funding available for early years - maybe this is why it is being funded.

 

I only watched the last 10 minutes or so and I found it very distressing, especially seeing the father restraining his child - yes it happens - but why pay all that money and still have to be restraining your littel one?

 

Best wishes

 

HelenL

[Lucas]

On the subject of crawling as an important developmental stage: I'm diagnosed AS and I'm Dyspraxic(no seperate diagnosis though) and when no one is watching I often find the quickest way up stairs is on all fours.

[baddad]

I watched the programme minus the first ten minutes or so, and found everything i did see both infuriating and scary... Same old cr*p about a 'normal' child 'trapped' in his autism (at one point his little sister was commended for her "Good Thinking" when she commented that he was "forcing his Autism out"... Which sounded really awful, as if the child was valueless with the autism 'intact'...

Yes, the little boy did say a couple of words; but given the intensity of the program it was hardly surprising. The cost of those few words, though, in both monetary and emotional terms, was far too high - sacrificing three peoples lives to force a square peg into a round hole seems insane to me, even if two of the three are willing sacrifices.

Thing that baffled me was they kept saying how much they love their son, but seemed hell bent on normalising him at any cost. There's no doubt that the LOVE was real, or that their actions were well intended, but they seemed to have lost sight of what they had to chase something that might have been, which - for my money at least - makes them two times losers...

[Lucas]

Just wait until I'm chairman of the world's most successful company and then there will be Autism Information broadcasts on TV, featuring a video of me playing with action figures in my big office.

 

"THAT's the chairman of the most important and successful corporation in the world!?!"

 

"Yep. His unique perspective and perserverance carried the company."

 

"Didn't he get treatment for his...oddness?"

 

"WHAT! And jeopodise his discovery of portable elmotronic regulators?"

 

"HE invented them?!"

 

"Yes, and now it's impossible to imagine a person without one."

 

I KNOW this will happen; I asked my 8-ball.

 

The thing with Sun-Rise is that it doesn't do anything that can't be done anyway without the expensive doo-da. All that being in a non-stimulating room would do is make an Autistic really bored, so it will only work if the child is the kind of person who is willing to try anything just because they're bored.

 

It actually goes against any evidence of implicit learning also; an implicit learner requires an enviroment full of materials that they can learn from(which is why you sometimes get five year olds that can't talk but can program the VCR). Sun-Rise learning is actually completely incidental; it's only prompted by the fact that those interacting with the child are forced to behave consistently for once.

[baddad]

Sun-Rise learning is actually completely incidental; it's only prompted by the fact that those interacting with the child are forced to behave consistently for once.

Absolutely - which is one of the reasons for 'banning' the outside world; it corrupts that consistent envronment... given that the objective is to include them in that environment, they're teaching the 'wrong' skills from the outset.

The other reason for banning the outside world, of course, is that it holds a mirror up to the artificial one and shows it for what it is... Given four hours a day of indoctrination and an underlying 'faith' in the programme, anything can look positive provided that all opportunities for comparison are negated. Very few religious 'cults' promote interaction with the outside world before 'enlightenment' is attained, 'cos the unenlightened tend to just b****r off!!

 

Lucas, so far as the elmotronic regulators go, I think you've been beaten to it... I bought two in Petticoat Lane for a fiver and got a free Carbenium Isolator thrown in... Sorry to be the bearer of bad news, but back to the drawing board (or 8 ball!)

BD

[Lucas]

Yes, and I thought the whole point of it was to teach us to function in a world that isn't always consistent and predictable. I am willling to bet that Raun Kaufman would have severe functiioning problems if he hadn't found lucrative work promoting Sun-Rise. It's hard to pretend to be cured when you have to work in McDonald's with the stench making you blind.

 

As for my super-secret world-changing invention and it's suprising current existence: Damn.

 

Well I still have:

 

The Metaphorical Alphebet.

 

The Anti-Grav Table.

 

The Cure for Bad Luck.

 

The Never-Ending Bouncy Ball.

 

Breathable Water.

 

A New Colour.

[caroles]

I think that for sure the son-rise program is not good,specially the having to be all that time in a room,but saying that a learner needs an enviroment full of materials Is not always true,for children with sensory problems,concentrate in the activity that is going to be done,only materials /toys for the activity or play time,and not having all the toys out at the same time is so important,some children would have problems with processing visual information,and the more materials,stimulus around them,the more difficult to make sense of all.

It's true that learners need an enviroment full of materials,but some autistic children have sensory problems,visual ,tactil,noise,etc,

My son ,has sensory problems,he is not autistic,but face same problems with sensory input,when he moves about he processed little information of what is around him,people,furniture,materials,and the more thing around him the more difficult it becames for him to funtion,if less things around him,quite and calm enviroment,making him aware of what is around him,etc he can manage so much better,when to much stimulation ,specially to much noise,he will change completly,not listen,not eye contact ,not aware of people around him,talking to him,spinning,head banging,trowing himself against walls,just because there is to much noise ,to much stimulos.

He is not autistic thought,in a quite enviromment he is social,friendly,can understand feelings ,emotions,and is emotionally mature for his age.If promted about what is around him,like@carefull a bin in frnt of you,or people turn around,etc,he is o.k too.

My son can talk quite well,but visually he can't recognized familiar faces if outside,within lots pf people,he can't recognized between something moving,staying still,like when cars are park and he thinks that he has to stop crossing because the car is coming,don't know what is around him unless promted ,everyday things furniture,lampost,etc,all is comfusing,doors,the lot,if you tell him he is going to bump into a wall he would move away,because he was a normal kid before and know what I mean,when I says a wall he has a image in his brain about it because he was O.K before.

But if a child has that problems since they are born,the world would be so confussing for them and difficult to understand,would not be able to talk and explain what they see,hear,etc,

their eyes,ears,etc work O.K but the brain interpratation of that is distorted ,they can not make sense of what is around them ,

[smallworld]

Hi,

I missed this last night. It says on the bbc website that the series is repeated on the bbc1 signzone starting june 6th. I can't find out anymore about signzone. Does anyone know when this doc will be on again ?

thanks,

 

wac

[Lucas]

Caroles,

 

I know what you mean, but abudant learning material doesn't neccessarily mean a sensory overload. A book can contain a huge amount of information, but it doesn't exactly block out all the senses.

 

I remember as a child being put off by thin books. I didn't like them, but the trouble is that people assumed that small thin children's books were the best to start me off on when teaching me to read. It would have been different had they known I was Hyperlexic(and knew what it means). I instead learned from big, thick books that had a picture on the front of something I had become interested in(frogs, pandas, I liked animals). But I couldn't understand a word of it of course, I was just taking in all the symbols.

 

I learned to read by cross-referencing all the symbol pattens I remembered with what the class was shown in spelling lessons(not reading ones).

 

The kind of sensory issues going on is important to understand with every person. I liked how the school library smelled so I wanted to spend most of my time there. I was very smell-oreintated, visual stimuli didn't bother me too much.

 

It's best to say that Autistics of all ages crave information and you have to watch how each individual seeks it out and then provide it in that manner.

[Lucas]

Some dismantling of Sun-Rise and it's founders:

 

http://members.tripod.com/RSaffran/sonrise.html

[mossgrove]

Lucas

 

I just posted that link to another message board. We must have been googling in the same places!

 

It is a bit of a rant, but in the main I agree with him. There is something disturbingly cult-like about the way they do business.

 

Simon

[call me jaded]

I wasn't going to post on this as I have been opinionated enough already, but it seems to me that they are using NLP (neuro linguistic programming) in their sales pitch to parents. Surf the shopping channels until you find a Tony Robbins presentation to see what I mean.

 

What I don't like is that they are asking a lot of money for you to do all the work.

 

Write a letter to your child. Well, no thankyouverymuch. He's here, I'll just talk to him.

[baddad]

Jaded -

 

Opinionated? don't worry about it... I'm the worlds worst, and - apart from the small bomb Kris and Elefan sent me for Xmas- nobody seems to worry too much.

Nothing whatsoever to do with Son Rise, but I disagree with you about writing letters... Ben and i send them often - little notes of apology or mawkish 'loveletters' for no particular reason.

Usually they're written at night, (my end) and Ben tends to write them when I think he's watching a DVD in his room. We find them in the mornings, and one really sets you up for the day...

Soft as S***e, i know, and very 'girly', but what the hey, were both confident enough not to worry about it! Try it, you might like it

L&P

an opinionated

baddad

[oracle]

We never went the 'Options' route with our two but my eldest son now almost 18 and highly verbal, still communicate best with me by writing me letters. He finds it so much easier than doing it face to face. Often he leaves me a letter in the bathroom for me to find in the morning and then he will let me know if it's letter he is happy to talk about or if he would prefer a written reply. I do not care how he brings his concerns and troubles to my attention just so long as he does. It works for us and it's a method he found himself.

 

With Matthew it's different because he has HUGE literacy problems but he will often discuss his issues though a closed door. Again usually the bathroom door while I am bathing. Must be something to do with the water in their

 

Carole

[call me jaded]

Writing has been very therapeutic to me, as it makes me order my thoughts and think hard about what I mean.

 

Writing the letter to your child seemed unnecessarily emotive, as it seems to me to be addressed to the child that should have been rather than the one you've got. I'm probably putting a whole lot into it that isn't there, but it did come across as an act of regret. I've dealt with my loss, I don't need to address it. As a method of communication to my son it just wouldn't work. He is non verbal and non scribing (if that's the right word for handwriting), can read a bit. I talk to him a lot. He reciprocates by look and touch. We are very atuned to each other.

 

Anyhooo. Enough already

[oracle]

Jaded

 

Surely it matters not 'how' we communicate with our children just so long as we have found a method that enables us to communicate?

 

There are no rights and wrongs here - and I would not wish to write letters to a child that might of been. I am quite happy with my sons as they are. So I can fully see your point.

 

Carole

[baddad]

Writing the letter to your child seemed unnecessarily emotive, as it seems to me to be addressed to the child that should have been rather than the one you've got. I'm probably putting a whole lot into it that isn't there, but it did come across as an act of regret.

No, don't think you were reading it wrong: the letter the father read was exactly as you described, a letter of regret and an 'I wish'., and i agree 100% that that sort of letter is

I didn't make that clear in my initial post. Sorry

I was just wanting to say that the whole letter thing can be a good idea if used in a positive way; that a declaration of love, or an apology or just a shared experience is sometimes better expressed indirectly. 'cos of the added 'soppy' quotient...

It's like the chocolate on a hotel bedspread - no real 'value' apart from the fact that it makes you feel good

Ahhhhhhhhhhhhhhhhhhh

(and for anyone who shouted "Monkeytrousers!" after reading the above line; ain't you got anything better to do on a Friday night? )

[call me jaded]

I'm married to a foreigner. He has no time for any of this Englishness, as he calls it. It all gets said, good and bad. It's probably why I wade in on here. I am much more diplomatic in RL.

 

Anyway I'm probably being a bit harsh on the letter front. It just seemed as if it was done to make people cry.

[baddad]

I'm married to a foreigner.

sorry