Do you think there really are "cures" for sn or is it all bollocks

[2shoes]

random I know, but for some mad reason I was thinking about this earlier.
you know the stuff, swimming with dolphins.......well I know young people who have done that, had a lovely time, but still the same.
oyxgen tanks or some such thing to help CP.....yeah like that will work.
people saying take victims for epilepsy.sorry you what!!
add your own.....

A cure no, i don't think so, but strategies, interventions & treatments, call it what you like to help cope with life or ease symptoms then yes thats possible.

Brain damage is brain damage ther is no cure.. its like chopping your leg off, you can't re grow another but but there is loads you can do with one leg!

i sometimes think we dont do enough for my son as he is not on any special diet thereapy or anything but he is so happy MOST of the time surely thats more important than a lot of things?

I think most of the so-called "cures" are just voodoo and nonsense - not too far off from people using leeches to cure all ills in the middle ages. The one thing I do believe is that early intervention can help as the brain is still "plastic" in the early years, and new pathways can be opened. I am sure that some autism is helped a great deal by bio-med and better diets, especially when there are clearly gut problems, but it drives me titless when people say their children are "cured" by taking gluten etc out of the diet. One couple I know who were big proponents of that theory have recently sent their kid to a school for fairly severe autistic kids, while having previously cited bio-med as having "cured" him. Cured, if that is really the right word given that autism is a lifelong condition, could be a word applied to my autistic DSD, who from being fairly severe as a toddler is now in a mainstream school, with no helper, and achieving top grades/making friends/virtually indistinguishable from any other teenager. She had virtually no formal interventions, although her mother did work hard on the language in the early years, plus stopped her from stimming very consisently. I think tbh it was just in her all along. Luck of the draw, some grow out of autism, most don't. Yet those who do grow out of it will cite all sorts of miracle cures, not wanting to believe that it could be as random as luck.

thats what I thought sickofexperts and there's lots of people waiting to take your money for brain damage. I felt hideously guilty that we couldn't afford brushing and patterning and conductive education.
But really, having talked to people who have done it, if your child has severe cp, so severe they can't even roll or hold their head up those therapies are useless. Mild to moderate CP can benefit, especially with CE but practitioners don't tell you this stuff. They take your money and make you hope.

With autism, the ketogenic diet has been found to help 'some' children. Now thats one you could start at home by going gluten free/low carb like the Atkins. It would be obvious if it worked. But therapies that cost thousands like stem cell injections or oxygen chambers just have no scientific backup. Doesn't stop desperate parents though
Henrietta Spink has a website where a lot of therapies are evaluated. Worth checking it out. She did it because she saw desperate parents being fleeced of money all the time.

Will check out that website DMRiven - sounds interesting. I am a bit annoyed that the only "reputable" monthly publication on autism, which is now sold in WH Smiths and is called The Autism File, gets much more credence than it should - it is basically only about bio-med, fails to explore the many other options around, and is run by a team who directly make money out of bio-med - a lot of money - plus they are linked with companies in the US which sell exhorbitantly priced vitamins to hapless parents, on what they call "prescriptions" to give it a fake scientific sound. I know I will get shouted down here, but I find it quite wrong that desperate and often poor parents are being encouraged to shell out literally thousands on these vitamin cures, and it must be ok as the mag is sold in Smiths!

My only experience is of ASD - but if someone told me that they had a cure for autism, I think my first question might be to ask what that person thought the cause was.

Give me an answer to that one, and I might be prepared to listen to your theories about "cures".

In terms of interventions and evaluations - I've found Simon Baron Cohen's website useful - but I can't find the link right now... erm - anyone?

well perhaps my experience is coloured by the fact that DS was quite obviously NOT ASD and then was. So the fact that he regressed into his condition makes it easier for me to contemplate that he changed and that change may be at least in part reversible. But whilst he has improved in terms of severity he remains firmly ASD - which is fine as he is happy and I love him as he is

But that is neither here nor there as I would not be trying to convince you of aything - not particularly giving a toss whether you believe my son has improved or not....

Sick, interested (and more than a bit sickened by) in what you say re that magazine which i have seen in passing. Yes, stocking in WHSmith certainly stamps it as 'official'.

we did CE and it didn't cos anything(not sure if it would have if we had done all the going to peru stuff)

The autism file has run plenty of articles on aba in the past!

I'm with pagwatch on this. My son is definitely better on some biomedical treatments (he's not having any at the moment - and it particularly shows in self injurous behaviours).

Actually think donna Williams (again) writes really sensibly about biomedical. She gets the balance right.

Simon baron cohen knows nothing about biomed and autism though - and he just doesn't do research on anyone outside the AS/HFA range.
I tend to think that 99% of the research into autism is irrelevant to kids like ds1 as it hasn't been done on children anything like him. The research community has recognized that now - or begin to- but nothing much has resulted from that recognition yet.

Saintly i am interested in your interest in biomedical approaches as you are a researcher yourself.From what I understand, the research and evidence for this intervention is sparse and patchy.

Is this so or do I not know about something I should know about?

Which biomed intervention? There are loads. Lots if research going on in the states - in good universities - the main problem us that the findings from the research gets translated (or not) into approaches which aren't tested and then if can get quickly confusing.
Google derrick macfabe Canada autism (can't link as I'm on iPod) - you should get a link to a video he presented to clinicians and patents which gives a good overview. He works specifically with the gut but he overviews a lot if the research going on and puts it in context.

Part of the difference us that in the uk most of the research is done by psychologists. In the us clinicians - neuros/geneticists/ etc do a lot of the research so it is seen slightly differently.

Ds1 finally has a neuro appointment to test for mitochondrial dysfunction after a Cambridge paed neurologist kindly recommended this course to his paed.

Apologies iPod typing crap

Oh and look at Kennedy krieger institute and mind (university California ) - lots of research there. Of have a look at the projects funded by autism speaks. Lots of biomed ones there.

These are projects which are generally nowhere near clinical trials but I think they give an insight into where things might go in the future ( and where some people try to go now - we haven't - we've just stuck to the basics).

Will do so thanks for that and interesting and v relevant point re psychs. in UK.

When the paed said that I nodded and thought yeh right.

It's interesting moondog if you go somewhere like IMFAR and read the abstracts you can guess by the content which side if the Atlantic the work is from (and if it's psychotherapy it's France ). It's even known as 'the British school'. I think it's given a great insight into as/ hfa and also things like executive function and processing - very important - but the US work gives a different angle.

I cannot read properly on this iPod but it looks as if autism speaks is now coordinating clinical trials and it might even be saying big pharma is involved. Not sure if that is good or bad! But I will read with interest on the proper computer tomorrow.

I think the best British autism researcher is francesca happe by the way. I really rate her and she is very easy to talk to. She is always worth listening to if you get a chance to hear her speak.

I think a lot of the "recovered" ASD kids only merited a PDD-NOS diagnosis to start with - so not the full triad. But there are aspects of ASD where I think show can make real progress - in USA some of the best (ABA based) programmes now getting 80-90% children develop speech when used to be 50%.

Part of that change will be the nature of the changing diagnosis though won't it? Most children diagnosed with ASD these days will speak (and I would put that figure at about 90% as a guesstimate) - whatever you do or don't do.

The children I know who have remained non-verbal past age 5ish would be non-verbal whatever.

Part of the problem I guess is not only that ASD is many different things, rather than one condition, but also that ASD 20 years ago was very different from ASD now.

think it is alsolot harder to assess any child that is non verbal.Ds shows lots of traits for asd but not enough for dx but then he also has brain damage so while he can learn ways to deal with things heis always going to be affected by language

non-verbal covers such a huge number of reasons as well. DS1 was originally non-verbal because he had no receptive language, the way he learned was completely weird because he couldn't imitate (and I think you cannot learn to speak until you can imitate). Sorted that aged 7 and so became able to work on speech sounds. Then discovered that as suspected he have v. severe verbal dyspraxia, cannot form consonants and so is likely to remain non-verbal.

biomed is used a lot in autism riven. It's a huge area though - ranging from something simple like a gluten/casein free diet to using various vitamins/amino acids etc to chelation (heavier going) to (not so much these days) a hormone given under GA. Others would include using various drugs etc.

I'm with Donna Williams - I think for some people with autism then biomed can proably be helpful, for others pointless. It will depend on the underlying issues.

'But I do loathe the way all these miracle stories simply conspire to send the endless drumbeat message that your child will never be helped because you were not persistent enough.'

I identify with this to a very great degree. Since DS2 was 3 we have done PECS, ABA, Floortime, Hanen and biomed, (with a bit of Intensive Interaction and TEACCH thrown in at school). We haven't ever done any of these things as intensively as is often recommended and as a result I've sometimes felt very guilty that we are somehow depriving DS2 of the chance (albeit slim) of 'recovery'.

Now he is at school full-time (since last April) we have even less chance to do anything intensive with him and have to admit we now do very little beyond playing with him as much as possible and continuing with his biomed regime (which is fairly 'light' - just supplements + gf/cf diet). We still use ABA and Floortime techniques, but we're not doing anything approaching a 'programme'.

I don't think it's made the slightest bit of difference. He continues to make slow progress, faster in some things than in others. When we were doing ABA he probably had a bigger 'stored' vocabulary, but he never used it, because he only uses words to ask for things he wants, and those things are limited. If he wants something new, he adds the word for it immediately. So we work on extending his range of desires!

I do think the dietary/supplement regime has made a big difference to him though - he is much calmer, sleeps better and has better eye contact when he's on it. Even so, he can be thrown right back by a change of circumstances - atm, the whole sensory onslaught of going back to school.

I have every admiration for people who maintain full time therapy programmes. We just couldn't do it - partly because I'm not cut out for it, partly because family life suffered. It doesn't stop me having twinges of guilt every time I read about a child who has made tremendous progress as a result of one regime or another though...