Son-Rise Autism "Cure"

[Stephanie]

Has anyone got any comments to make about the Son-Rise programme from the Autism Treatment Center of America.

 

Anyone tried it?

 

Anyone doing it?

 

Does anyone believe in it?

 

The CEO of the company, claims he was "cured" of his autism (he was the guy on Richard & Judy a while back if anyone saw it).

 

I presume it is very very very expensive. I have just requested a brochure.

 

I would just be interested to learn more about it from any comments you may have.

 

Thanks.

[mossgrove]

The CEO of the company, claims he was "cured" of his autism (he was the guy on Richard & Judy a while back if anyone saw it).

 

I presume it is very very very expensive. I have just requested a brochure.

 

Those two comments say it all I'm afraid.

 

Autism is not curable in the sense that someone with autism can become neuro-typical. 'Cures' have been peddled for years but there isn't a shred of evidence to suggest Autism isn't a lifelong condition. And you're right, they are a business, there to make money out of Autism.

 

As you can see from the top of the home page only the first 25 min conversation is free, then you have to pay. They also don't quite any prices anywhere.

 

This makes me suspicious before they have even started selling their wares.

 

Most of these behaviourally intensive programs are aimed at getting your child to behave in a more Neuro-Typical way often by intensive intervention the child can find stressful.

 

The plain facts of the matter are that the child is Autistic, i.e. different.Many autistic people take exception to the idea that Autism is a disease to be cured, they are proud of being different.

 

The whole sales pitch is based around the fact that if you aren't trying to make your child more Neuro-Typical by spending a lot of money on their programs you are failing in your duty towards them "We won't give up on your child' is emotive and cynical at the same time.

 

Sorry if this has turned intio a rant, but I don't like it at all, and I find their marketing manipulative and offensive.

 

Simon

[barefoot wend]

Have to say I have no 'first-hand' experience although I know someone who works at the one near us and thinks it's 'brilliant' (they don't live with it 24/7 though).

 

My main problem with it is the huge insistence upon eye-contact which most people with asd find very difficult. I'd hate to force it on my son.

 

It's also very expensive and hugely intensive which would leave me vitually no time with my other 3 children. My son goes through patches where he makes huge strides and patches where he regresses. I always wonder about 'miracle' cures - is the child just going through a 'good' patch?

 

Yes, I'm a cynic.

 

Barefoot

[oxgirl]

Has anyone got any comments to make about the Son-Rise programme from the Autism Treatment Center of America.

 

Anyone tried it?

 

Anyone doing it?

 

Does anyone believe in it?

 

The CEO of the company, claims he was "cured" of his autism (he was the guy on Richard & Judy a while back if anyone saw it).

 

I presume it is very very very expensive. I have just requested a brochure.

 

I would just be interested to learn more about it from any comments you may have.

 

Thanks.

 

I worked with a little girl for two years on the programme. She did make some progress and some things did improve, but she was in no way cured.

 

Good luck.

 

~ Mel ~

[Jadensmum]

I have to agree with Simon. I don't like the idea at all.

 

I have dealings with a woman who is setting up a school near us who has been over to America to see thse people ( I think she was also on the TV programme about it) and she wants to use the techniques in this school.

 

There is no cure for Autism (as yet) and I think it's very sad when people / organisations use the word "cure"

 

It actually makes me quite cross

[baddad]

From the sound of these 'training programmes' etc and new schools opening it's starting to sound a bit like a McDonalds franchise, or pyramid selling or something...

What's your opinion of McDonalds? What's your opinion of pyramid selling? Mine's not particularly 'good' in either case!

I think the concept behind SonRise ('cure', 'reprogramme', whatever you want to call it) is inherently flawed, and that trying to force square pegs into round holes - no matter how well intentioned - will ultimately do more damage to the square peg than it will do good... A square peg is a square peg, and the only way of making it fit a round hole is to chip bits off the peg or make the hole more accommodating. the latter makes much more sense to me!

This forum has many users who have been dx'd as adults, and without exception ( I think) they have all struggled and suffered through trying to appear normal while feeling fundamentally different... That's what (IMHO) SonRise promotes - a denial of the 'self' for a more socially acceptable pretense, regardless of the consequences for the individual...

Rather than making autistic people acceptable I think we should be working toward making society more accepting - and SonRise undermines that...

 

L&P

 

BD

[oracle]

I am someone who has doubts that Raun Kaufman (whose parents invented Son Rise) is actually autistic. There I have said it now - but I have said it before to on many occasions. If you look at Son Rise it's a mixture of common sense and cruelty, in my opinion, because I do not believe that locking yourself and your child in the bathroom for hours and hours so you can programme them is a very good idea. This is what Raun's Mum did with him, or so I have read.

 

The common sense part is just that and I don't need to pay mega bucks for that. These things play on the word cure which I hate. I also feel they are very hard sell and in your face - just like McDonalds really - which may well make food but it's never going to win a Michelin Star for cooking is it? And you can't cure autism either.

 

Oracle

[mbrown]

There was a program last year about the son-rise program and ever since then I have been opposed to it. Not so much the techniques involved but by the course itself. Massively expensive and way out of normal peoples reach.

 

The papers are full of people who have raised x000's of pounds to go on a two week course. Granted many parents come back singing the praises of the son-rise programme.

 

Parents are encouraged to exagerate the tiniest little incidednt as a major breakthrough.

 

I believe in intensive therapy in certain cases, the floor time, sensory input etc but this could be acheived much more easily and cheaply than heading off to the US.

 

I can't deny there are many people that claim it is brilliant but there are a lot of very desperate parents that will pay and do anything for the slightest hope of improvement.

 

Along with everyone else I am critical of the 'cure' claims associated with this programme. I believe that this raises false hopes, in desperate parents.

 

The son rise techniques aren't a secret. I think it follows regular therapeutic practices and magnifies it to the nth degree. If it is so great and it works. why are they only based in Massachussetts? Why not open up a centre over here? Is it because they wouldn't get away with their claims over here? It would make it considerably cheaper and easier for UK parents to be trained in the programme if that is what they desire.

 

Just my tuppence worth

Mike

[LizK]

I am dubious of anything that is bandied about as a 'cure' and of anything that involves parting with a lot of money. If the boy in question is no longer autistic I would query whether he was autistic in the first place.

 

The problem with any of these programmes like Son-Rise or at the other extreme ABA is that is it simply because someone is spending 40 hours a week or so locked up with the child doing 1-2-1 that is having the effect rather than the programme itself. When my son got 15 hours funded 1-2-1 time at nursery he came on in leaps and bounds and we didn't have to convert a room, wheel in therapists or isolate him from the world to achieve that.

 

Like many of these programmes I like some aspects and some parts make a lot of sense. However I do think they take a fairly one dimensional approach and don't really seem to understand autism in its entirety nor focuses on maximising development which I think is different. I don't like the idea of 'fixing' a child and worry that it is just superficial for the benefit of the parents or society rather than the child itself.

 

Have you read about Intensive Interaction? I think that is along the lines of Son-Rise but not so extreme

 

Liz x

[Bullet]

I agree with mossgrove as well. I want Ds1 to be able to communicate his needs and yes, I would love to eventually have a conversation with him. But if/when that happens he'll still have ASD. I can talk to people, go to the shops on my own, put forth my own opinions about things, raise two children, basically pass for neurotypical. I'm probably not though and those who know me do pick up on my differences.

[kinky j]

excuse me while i go off on one.........

 

 

i passionately hate the son-rise programme, my son, regardless of his dx, is the most perfect little boy i know (and i'm sure you all feel the same about your own children) i find the idea of forcing him to fit into a world too prejudiced to allow for him to be his own unique self distatesful and quite disturbing!

 

i had an arguement with someone i know about this quite recently, as a couple in my town have had the local newspaper raise money for them so they could go do the course in america and have an exstension built on their home for this purpose, and he couldn't understand why i got so upset about it,

 

the way i see it, if somebody is in a wheelchair, you don't intensively bully them to start walking, you adapt their homes and lifestyles to reflect their needs and most importantly, you respect them for the person they are, why should it be any different for our children?

 

children with asd's grow into adults with asd's, and thank god they do, who wants to all be the same anyway!

 

(sorry stopping now)

 

kj

[bid]

With you all the way, Kinky!

 

I find it scary, scary stuff

 

Bid

[Lynden]

I looked into this - got sent all the information and got the phone call - I didn't take the call after reading the information though. I basically figured that to spend the 70 hours (I think they recommend 40 hour minimum) recommended one on one time would be detrimental to the rest of my family. I also didn't see the point in spending �000s to go to the US to learn what they teach. I agree with LizK - if you are spending lots of one on one time with your child they are going to come on in leaps and bounds - you dont need programmes like Sonrise to tell you that.

 

I'm also leaning towards agreeing with Oracle re Raun Kauffman - they claim at 3 he had an IQ of 30 - when at the minute I daresay Logans is no higher than that - but thats no indication of what his intelligence may be in 15-20 years time.

 

Lynne

[Suze]

I saw the programme last year , the family converted a shed into a therapy room for their son, who did show an improvement of sorts .What I really disliked though was the jargon and ###### the people "plugging" this came out with at the meeting they had it made me want to puke.There was a room crammed full of parents listening to this american woman spouting a cure, it made me sad and angry.Most autistics hate things like this "cure"............so do I

[CarerQuie]

They are peddling their programme in our area shortly.I shall be washing my hair that day!!!xx

[Flora]

I saw the tv programme a while back where the parent's had converted a shed into a room for the 'son-rise' programme.

 

TBH I didn't like it at all. It was promoting the idea that it was child led; ie, that whoever was with the child should follow their lead and get 'in there' with them. On observation of this in practice, this is not what was happening. Basically the child, from my perspective, was being coerced to interact via a process of playfull stimulation, ie, being forced 'nicely'.

 

Also, any programme which encourages to push for eye contact is wrong, IMO. I know from both my boys, and myself, that there is a very good reason why eye contact is avoided. Personally I find eye contact physically, mentally, and emotionally painful, but if I'm in a situation where I know eye contact is expected I can do it of sorts but it means that I'm exhausted with the stress of it afterwards.

 

Also, many autistic children will make some progress as they grow up and mature. Neither of my boys have been put through the son-rise programme, but they've both made specific progress which I'm sure if they'd been put through son-rise would have been attributed to that when in fact they would have made that progress regardless.

 

Finally, if the integrity of this therapy/programme had been proved then surely it wouldn't be so expensive to purchase/implement as the bulk of the work is done by parents and carers, why should it be so pricely?

 

Sorry if this comes across as ignorant. I'm very cynical and suspicious of any of the programmes availabe which try to sell themselves for such a huge financial cost.

 

Flora

[Melinda]

I am sat on the fence as far as the Son-rise program is concerned. I have read the book and last year attended Raun Kauffman's lecture. (Free!) I have also had the 25 minute phonecall! I was very impressed with both of these and pleasantly suprised that there were no claims of a cure. Instead, they were just extremely positive about my children for who they are. There is nothing amazingly different about the son-rise program's methods - just the amount of time put in and that they use a play room. (Though they were less prescriptive about the playroom than I thought they would be). I do think Raun Kauffman was autistic as a child, the descriptions of him are amazingly similar to my own children as are the photos of him. He appears not to be now. What no one will ever know is what progress he would have made if his parents hadn't embarked on the program they did.

 

My reservations are about the costs and implications on family life. Personally, I would have not hestitated to start an intensive program based on son-rise techniques had I only had one child, but, I have twins both of whom are autistic and an older child to think about and I just didn't see it working!!! I seriously considered it when I was looking at special schools and was not happy with the one in our area.

 

I think my main concerns about the costs are that it is a lot to pay out to learn the basic methods which are very similar to Hanen which I attended locally for free and that they insist you do the first course before the later ones. I have attended Intensive Interaction training through work and would say there are some similarities, although Intensive Interaction is based on work with adults who have missed out on early stages of development (as far as I remember, might be wrong!).

 

Son-rise do run their courses over here now and a UK Charity (can't remember which offhand but you will find it on the son-rise site) was offering funding.

 

I am not sure - like I said I am sat on the fence! I don't agree at all that it is the sort of program that forces children to do activities they don't want to do. It appeals to me precisely because it emphasises following the child's lead rather than imposing set tasks. I have used these techniques a lot with my own children (I can regularly be seen spinning round the living room!) and I do think they help to develop connections with very remote children which mine were. They are not now. Just because you put in a lot of time with a program it doesn't mean the child is being bullied into doing things they don't want to do. As I said, I don't do the program but I do use the methods and my children really enjoy people interacting with them like this.

 

Oh.............I don't know!! I have reservations about the way courses are run but not with the actual program I suppose.

 

Melinda

[something vague]

OOOOHHH this is the fifth try at answering this. I've had an excellant experience as a volunteer for son-rise. I dont do it now - dont think there are any families in the area doing it.

 

I find it an extremely positive, nurturing way of helping a person with ASD develop to their full potential. Its not a cure, though i do think that Raun was autistic. I dont know much about the cost so cant defend it really. I find it really fun to do and I learned to be much more accepting and understanding of ASD through doing Son-rise.

 

Intensive interaction has similar principals and is well worth looking at if you dont want to be doing an intnsive home ed program. You can fit II in when the feeling takes you.

 

SV

[hedders]

a friend of mine who son is autistic believes in the son rise programme, she has attended all the courses and is going to her third in december, apart from how expensive it is, i havent seen an improvment he seems to continue along his own path.

she has a rota with family of doing one one in his room now for 2 years, she cant get the school to follow in her beliefs and puts some blame on the school. i notice that his sister resents all the attention he gets on the one-one, and feel for her.

i attended one of the talks in bristol explaining the son rise programme by the family themselves, it was interesting but i knew most of it from courses i done in my job (nvq111 in care)

on her 1st sonrise programme was alot to do with the parents it seemed abit like a councilling service she said lots of people were crying as they had to explain their child in group activities.

i think the 2nd programme was about one-one interaction and getting into their world to try and bring them out, you have to be 100% commeted to a programme and son rise believe in home teaching and not going to a school.

the 3rd programme in november (i think) not sure what that involves yet?

good luck if you go down this road.

the sonrise programme also likes for families to go to america for the intenstive programme but this is many thousands

[CarolJ]

I personally wouldnt follow this programme, the idea smacks of brainwashing! With my son he needs to be shown repeatedly in order to learn a skill.

 

There are also the metabolic issues with autism which must be addressed too, the sensitivity to foods, immune system questions which have to be addressed (thats why so many parents follow diets).

 

To claim a "cure" is wrong.

 

All I want for both my children is for them to learn skills in order to cope better with life.

[curra]

The principles of the Son-rise programme, acceptance, love, parents joining in to child's interests, stimming and games in order to develop better interaction, are things that I have always done with my son without having to pay thousands of pounds. The programme sounds good, but I dislike the idea of making a business out of it. I think that better understanding and accetance of ASD would help more. My son will never be NT and I would not place him in a programme that aims at changing him so that he can be "cured". He's got enough problems trying to be accepted for who he is. In order for him to achieve his full potential there should be appropriate schooling for ASD children IMO.

[snowman]

This is a very controversial subject so please hold fire whilst I put my 2p in.

 

We have been doing Sonrise with our son since nov 2005 and I think it works. He has hfa and is home educated. He is much less controlling and more outgoing with people at our home. Still shy away from home but he is greatly affected by sid.

 

There are free introductory lectures in the UK and a free 25min call - if you prepare questions they give you useful techniques to try. The startup course is expensive (�1,300 for 5 days) but very helpful. I had always thought I was very accepting of ds but startup really makes you examine your feelings (and they do not force you to do this in public). Those on low incomes can be funded by the Caudwell trust. Yes the talk of a cure and the hard sell is offputting but I have found it greatly improves my communication with ds. We are booked for the intensive next year and are using all our savings. I don't look on it as a magic cure, more training of us parents to grow with ds.

We do Sonrise part time as I also home ed our 2 other kids. We have 7 volunteers who love playing with ds.

 

I would recommend anyone to go to one of the free lectures coming up in the UK and have an open mind. As for whether Raun was autistic / not - that's irrelevant to us.

[Stephanie]

Thanks for your comments everyone. It is obviously something you feel passionate about.

 

It seems that the people with experience of the program mostly favour it and the people who haven't done the program are more sceptical.

 

I think the cost is irrelevant if it works, but I hear your comments on the time thing, I do not think that commiting to that kind of schedule would be fair on my youngest son.

 

I will wait for the brochure and go with the telephone conversation - well you have to take it if it is free! and then go from there.

[oxgirl]

I hear your comments on the time thing, I do not think that commiting to that kind of schedule would be fair on my youngest son.

 

 

It is an enormous commitment and probably a lot easier to manage if you only have the one child I would have thought.

 

Best of luck. <'>

 

~ Mel ~