Article in Daily Mirror - can you ever cure autism??

[westie]

There is a 2 page article in Daily Mirror with title given above, mentions a group called "treatingautism" and seems to imply that by using specific diet you can cure autism. The article has been written about a mum who has twins who were previously diagnosed autistic but after following advice of the group in terms of diet and supplements that they have been reassessed and are no longer on the autistic spectrum....

 

Has anyone else heard of this group, or of this idea that people are/ can be cured??

 

I have heard of behaviours etc improving as a result of changes in diet and this makes sense to me, but it doesn't necessarily mean you are cured....

 

saying that whatever the reason it is positive news for this lady and her children who seem to have made great progression (apparently they still need intense speech and language therapy, but only a yr behind academically and greatly improved behaviour/ reduction in autistic symptoms)

 

If I can find it online I will post a link...

 

[westie]

http://www.mirror.co.uk/life-style/real-li...15875-21164151/

 

link as promised

[cmuir]

Hi

 

Interesting top. It's one that I feel quite strongly about - I personally don't believe for a minute that anyone can be cured of autism. Autism is a lifelong neurological disorder. However, I do believe that in time people can learn to get through life/cope. A combination of maturity/experience that comes with that, good diet, good support services, caring family/support network, medication, etc can all help.

 

Caroline.

[lynne]

 

 

I also tried my son on enzymes and although they improved his condition he is definately still Autistic.

 

 

But food intolerance and food can play a big part with out children.

 

 

If my child has a "M" meal than we get problems with him. During this time his behaviour is less desirable and the tendency for him to have an meltdown increases.

 

 

There are lots of things we can do to help our children, not all approaches will suit every child.

[Special_talent123]

yes i have heard of them they are coming down here soon. even though u cant even cure autism it is rather silly.

[westie]

Hi

 

Interesting top. It's one that I feel quite strongly about - I personally don't believe for a minute that anyone can be cured of autism. Autism is a lifelong neurological disorder. However, I do believe that in time people can learn to get through life/cope. A combination of maturity/experience that comes with that, good diet, good support services, caring family/support network, medication, etc can all help.

 

Caroline.

 

That sums up how I feel as well!

[westie]

also it took me a while to figure out what an "m" meal was, but think I sussed it now!

[Flibs]

To suggest someone would want to be cured sounds awful ,you cant "catch autism" but you do have to live with it

[gavpedz]

Articles like this just make me angry as you have all said Autism can not be cured but can be improved upon etc all these articles do is give those narrow minded people something to give you and tell you your child can be cured.

[florrie]

Jenny Mc Carthy says she managed to pull her son out of autism by using diet , yeast control and sensory integration so he improved so much he no longer fitted the criteria for autism. It did cost her around 4000 dollars a week and she did have many different doctors and speech and language therapies, and other integrative therapies. She says there is a small window of opportunity where people can be pulled out of autism if they get the right help when young. I believe because my son did not get the speech and language therapies and auditory integration therapies that are available now he would have done better. Although I know some things do not work at all for many autistic people. Everyone with autism is different

 

http://www.amazon.co.uk/Louder-Than-Words-...4567&sr=8-2

Edited March 9, 2009 by florrie

[DJ With Aspergers]

Just read the article and my blood is boiling .... how can anyone say that the children are off the spectrum, there is no way this is possible in my opinion - they may be at the High Functioning end, but once on ... always on.

[lisac]

you know, jenny mc carthy could be right, regarding there being a small window of opportunity where children can be pulled out of autism. I can see this. If it is true it would be down to having all right experts, therapies, and everything in place at that time and a hell of a lot of money at that time to fund it. It is so easy for her to say. Talk about making the rest of us feel a failure though!

[lisac]

sorry, meant to say, make 'some' of us feel a failure. Im not generalising, even though it was tongue in cheek.

I do think she may be right though, and its down to timing . Interesting to see what others think.

[cmuir]

you know, jenny mc carthy could be right, regarding there being a small window of opportunity where children can be pulled out of autism. I can see this. If it is true it would be down to having all right experts, therapies, and everything in place at that time and a hell of a lot of money at that time to fund it. It is so easy for her to say. Talk about making the rest of us feel a failure though!

 

 

Hi

 

I believe that autism is a lifelone neurological disorder. Whilst I don't believe there's a cure, as I've already mentioned, I think that a combination of things eg good diet, tuition, experience that comes with age/maturity (ie learning management strategies for things that are difficult), etc can help to minimise the more obvious 'symptoms'. I therefore think that people who are regarded as being high functioning may be able to disguise autistic traits because they've been taught and managed to cope with things, hence the reason that some may fall just short of continuing to meet the diagnostic criteria than previous.

 

Caroline.

[Diane]

I believe that those who say their children were cured of Autsim through any means are wrong. There children obviously did not have it in the first place. As I explained to someone the other day just because someone who is Autistic can learn coping skills it does not mean they stop being autistic and have Aspergers instead and the person with Aspergers does not become NT because they outwardly seem to be doing okay. The diagnosis given is for life and you learn to live with it,

 

If I could find an easier way to teach my son about the nuances of life than what we go through at the moment I would be first in line. It would be knowing that I could never cure his AS.

 

 

[pookie170]

I'd be rather more interested in finding out how the 'miracle cure' kids feel they cope in day-to-day life. I wonder if these children will continue to be monitored, or be reassessed at regular intervals through their childhood?

I can't say I find the whole idea of curing autism (in the manner mentioned) plausible- if it were so, I doubt autism would be as prevalent as it is at the present moment.

I agree with lisa with regards to intervention-the earlier, the better, I say. Not just because it's more efficacious (IMO!) but I reckon its less invasive and traumatic for the child concerned. I imagine it must be rather a shock to the system to have new and intense interventions thrust upon you if you've spent years without having your behaviour challenged. Actually, that rings true for many other conditions too- I wish to goodness my son had never attended mainstream at all and have often pondered over where we'd be now had he attended an ASD unit from P1. (Having said that, he was not assessed late by any means- some stories I've heard are shocking..)

I read the article about the twins and I dunno......I don't feel I can really judge as I've never tried Cal on a GF/DF diet, or anything like it.

Has anyone else, who has implemented a change in their childs' diet seen a huge change like the one this Mum describes? (Not knocjing anyone here, I'm just interested...)

 

 

[Special_talent123]

Articles like this just make me angry as you have all said Autism can not be cured but can be improved upon etc all these articles do is give those narrow minded people something to give you and tell you your child can be cured.

 

I have heard of treatingautism company they are coming down to us this year and i dont like it when its to do with cure there aint a cure

[CEJesson]

Sorry I do not believe very much of that tripe.

[sesley]

people who keep asking for cures for autism are people who can't accept that autism is a different disability that is a life long condition. its a cure they are trying to find its because they are people who look for something or someone to blame, rather thatnaccepting the difference for what it is.

[florrie]

I don't understand why anyone would be offended at someone who wrote a book explaining all the things she tried for her autistic child and the things that helped, it resonated with me because they are similar things that I found helped too. I read everything there is on autism, I have hyperlexia and asperger syndrome and my son autism. I thought it was a really good book, she went through hell as well. Yeah she had the money and I do believe the therapies that work are not on the NHS. They are better in the US at understanding the sensory problems and other issues too. Sensory integration therapies do help many autistic people. Ihad to go privately to get my dx. The only reason my son got dx was he was fortunate enough to have a paedatrician who understood the difficulties

 

I think the book should be read and therapies tried before criticized, Everyone is different though, an individual, no one with autism has the same constellation of symptoms. I agree it is neurological and biological but that doesn't mean there aren't things that can be done to improve functioning people's quality of life.

 

I do wonder though that people who get completely better on just CFGF probably do not have true ASD but an allergy to those products as many people do. I feel better on CFGF but still have auditory and visual integration difficulties.

Edited March 12, 2009 by florrie

[bid]

I think what offends some people is the use of the word 'cure', because the implication from that is that autism is some kind of illness or disease.

 

I also feel this puts pressure on parents, and can make some people feel guilty that they don't try every new therapy or 'cure' that appears, many of which cost a lot of money...which I think is very unfair as most parents are crippled by stress and guilt as it is

 

Unfortunately, articles/books like this are often written in a very evangelical way, rather than a more low key 'here are some things that worked for us' tone.

 

I know when my son was little I felt huge guilt that we couldn't afford the treatment that was in vogue then (brushing I seem to remember)...yet I haven't heard of it for years, so assume it wasn't the great success it promised.

 

Bid

 

 

[chris54]

My wife found an article in a magazine just yesterday about a dog curing their our sons autism".

 

Having read the article I have no doubt that having a dog helped this boy but as far as I could see from what was said he still had autism. It would seem that the dog was the catalyst for him to start speaking.

 

I will have to go back and see if I can fine what it was that triggered my sons leap from no speech to speech at the age of 4. Then I can write an article about it and get it in the papers. (I'm being cynical)

[gavpedz]

These people that are talking about a CURE just can not except there child has Autism!

Yes one day may be there will be some amazing cure but i doubt it, it just really gets my blood boiling.

While these parents are franticly hunting for a cure etc etc there child is just getting dragged along or even wors ignored while the parent searches for some sort of reason or peace of mind. Its just mad yes there are a few that do with a lot of help and support learn to manage there behaviours well and can come across as "normal" for want of a better word.

 

This hoverer should not be broadcast as "my child was cured it is false and untrue!

[Squirrel]

It doesn't really seem as if the twins are 'cured' anyway - they are still having intensive therapies. Just that they no longer tick enough boxes to fulfil an Autism diagnosis - and if I've learnt anything on here it is how difficult it can be to get an Autism diagnosis even if your child shows many of the signs, difficulties, whatever.

 

I don't think my son will be diagnosed as Autistic, there are too many contra indications, but I am exptremely grateful that the Autism team here (Lund, Sweden) are interested in him because he does have some clear difficulties that are common to ASD conditions ..... any help we can get to enable him to cope successfully in the NT world will be gratefully received!

 

Where should I go for more info on the dietary stuff? I'm reading the references here as gluten free and dairy free .... I don't think Robin has any intolerances or particular reactions to gluten or dairy

(His reaction to certain fizzy sweets has to be seen to be believed - he turns into a 'happy drunk' and knows he is acting strangely but just can't help it)

 

Obviously I am in nowhere near as sensitive a situation as many of the people on these boards - the experiences you describe make my difficulties feel very humble indeed - but I would suspect in this case that the mother has been amazed by the twins' progress, and the journalist has indulged in a bit of drama-speak with some sweeping generalisations to catch headlines ...

 

Helen

[Squirrel]

It doesn't really seem as if the twins are 'cured' anyway - they are still having intensive therapies. Just that they no longer tick enough boxes to fulfil an Autism diagnosis - and if I've learnt anything on here it is how difficult it can be to get an Autism diagnosis even if your child shows many of the signs, difficulties, whatever.

 

I don't think my son will be diagnosed as Autistic, there are too many contra indications, but I am exptremely grateful that the Autism team here (Lund, Sweden) are interested in him because he does have some clear difficulties that are common to ASD conditions ..... any help we can get to enable him to cope successfully in the NT world will be gratefully received!

 

Where should I go for more info on the dietary stuff? I'm reading the references here as gluten free and dairy free .... I don't think Robin has any intolerances or particular reactions to gluten or dairy

(His reaction to certain fizzy sweets has to be seen to be believed - he turns into a 'happy drunk' and knows he is acting strangely but just can't help it)

 

Obviously I am in nowhere near as sensitive a situation as many of the people on these boards - the experiences you describe make my difficulties feel very humble indeed - but I would suspect in this case that the mother has been amazed by the twins' progress, and the journalist has indulged in a bit of drama-speak with some sweeping generalisations to catch headlines ...

 

Helen

[Lucas]

Ok, about a third of children diagnosed early have the diagnosis removed. But this is not done because they are no longer Autistic but because they never were. The diagnosis removal is retrospective because the differences between some Autistic and non-Autistic children at that age are not disparate enough. Diagnosis is only made this early as a kind of 'on the safe side' pre-emptive.

 

This is why I'm very suspicious of the attempt by North American Autism organisations to shift so much emphasis toward early diagnosis: the more children diagnosed this early, the more diagnoses get removed and people claim that this is because X and Y therapies are working when it isn't the case at all.

 

The US *does not* understand Autism or sensory issues any better; it's simply that their de-regulated health system allows quackery greater leeway. There is very little evidence about how Autism actually affects the senses and even less on therapies centred on assisting with those issues. Whilst happy to use this topic to push all kinds of therapies, US organisations couldn't possible show any less interest in research on the matter which would in all likelihood debunk most of the therapies.

 

Articles about "I tried this and this and it worked" are infuriating because they advocate a complete abandonment of ethics and evidence in deciding how decisions should be made about Autism and Autistic people. Big pharma has enough problems even with the considerably higher regulation it gets compared to little pharma, so just imagine the amount of predatory fraud that goes on in the alt-med industry. Despite vast amounts of evidence to the contrary, people still see snake-oil salesmen as 'heroes' or 'mavericks'. Even if it were all perfectly safe placebo there is still harm; the justifications for these therapies involve categorically misrepresenting what Autism is. If you took your information about Autism purely from them, you'd think bowel disorders, food intolerances, allergies, seizures, hair falling out, rashes and late onset were recognised symptoms. Of those features which are symptoms, there's a failure on the part of non-Autistics to empathise with Autistics and this failure is not recognised whilst the apparent lack of empathy from Autistics is exaggerated. The idea that a person might have a good reason for doing something if they are Autistic and what they are doing can be described as 'autistic behaviour' is hardly even entertained. When the alt-med movement targets Autistics and features of Autism, they act with utter prejudice, dismissing any possible reasonable explanation that reveals some action as actually being a reasonable one in the circumstances from the Autistic point of view.

 

People do not know what they want most of the time. They do not know what they are even thinking or feeling most of the time. But they try anyway to create the impression that they are more confident and have more self-control than they really do, when actually they are ambivalent, indifferent and confused most of the time. Everyone is disabled, but their success in society apparently seems to depend on their ability to hide it. As an Autistic I always knew I was disabled in this way, but it's simply in my nature to not disguise something like this. People take advantage of it and this seems to happen on a massive scale in regards to Autism treatments. We're often convinced too that these confident and secure people can make us just like them. Harsh experiences have taught me that they can't make me like that because even they are not like that; it's an act they put on in the same way I put on a "I'm a typical person" act when ever I go out the house. They can just do it longer and it's less interesting. You can tell what kind of person someone thinks you are by the kind of person they try to be with you. I wonder if they know we're all just pretending?

 

Autism treatments invariably focus on the inability or refusal of Autistics to be actors, or act a certain part, rather than their actual skills or development. When they finally make a proper commitment to evidence and ethics like any other medical intervention or educational method, I'll have no problem with them.

[florrie]

Thanks for explanation everyone, yes I can see why the word "cure" aggravages, especially if people are also on the autism spectrum and take newspaper sensational headlines literally which I do too sometimes but just not that one. It is probably more to do with newsaper having to have a sensational headline. Of course people should not feel guilty if things don't work, or can't afford them, I don't feel guilty I sometimes feel angry because I think every ASD is an individual and they have the right to the kind of help and support that they feel helps not that someone else says helps and it should be free or affordable.

 

one of my obsessive interest is holistic health in everything, not just asd, the obsession/interest in it helps me even if not all things work. I get frustrated with it someimes too, but I absolutely loathe allopathic medicine due to the amount of abuse we received from the NHS, all the NHS have ever done is made things so much worse I nearly did not survive by covering up and blocking 3 referals to adult asd specialists this was not just over asd but physical health too and educational people did the same with my son which started almost 20 years ago where there was even less known, he was one of the first to be dx by good fortune to see someone who had knowledge and who saved our lives,so as a resultI don't believe much I'm told by mainstream I read everything and am interested more in people's personal experiences many of who are not selling anything such as me, than research that is funded by pharmaceutical companies and those who also have a vested interested in pushing their products,

 

I do try many things and many do not help at all and it does get discouraging I feel that too. But I disagree lucas I feel that sensory processing difficulties can be helped especially when young, I read and studied montessori and sensory processing years ago before I was dx or I even had children, young children's brains under 3 are not yet fully developed and are more malleable to absorbing information around them they have what montessori described as sensitive periods where they have the ability to absorb information on a scale we cannot as adults, that is how they learn so much by the time they go too school, one example is that is why most children (neurotypical)learn to talk fluently by 3 or 4 but most adults cannot learn to speak a foreign language fluently in that period of time. I originally ended up getting my dx in asd by having the sensory processing problems or weak central coherence which leads to uneven cognitve profile tested, and I am pretty extreme although on presentation my symptoms appear subtle but my difficulties are not, which this is how Iunderstand autism I can see what is causing the difficulties rather than just looking at the symptoms. I guess that is because my constellation of symptoms as a female appearing on presenatation subtle as they are masked which is how I learnt to cope and also were not typical. I then had to find a clinician who understood it, all the professors understood it as asd but the clinicians in the NHS I came across can't even get too first base. I was dx by a famous world class expert who I better not name and the staff psychiatrist in the NHS would not acknowledge it and rubbished it as he didn't understand it. The only reason I am here though is Ijust kept going, Ihad to borrow money and go without even basic stuff like food and fridge to get assessments.

 

Where is the research that shows sensory integration therapies don't help and who was that funded by? I've read plenty of people say they do, they tend to be mostly people with young children though, and the difficulties are that many kids with aspergers or high functioning autism do not get dx until a lot later sometimes teens or even adulthood. The place I went too has been given awards by congress for there work in this area.

 

I didn't think you could get a diagnosis removed, are you sure? once you have been diagnosed you have been diagnosed, even if is true someone improves so they no longer fit the diagnostic criteria, they have still been diagnosed, you can't take that away. I can see why that is alarming as it is often so difficult to get diagnosis in the first place, Ihad not thought of that...

Edited March 18, 2009 by florrie

[ian stuart-hamilton]

I have but one thing to say to any proclaimed cure for ASD - show me the results of a controlled blind study and I'll listen. Show me the results of replicated controlled blind studies and I'll believe.

 

I'll explain this by example. Let's suppose that I tell you there's a cure for ASD, and I know this cure works because children who have had this new treatment (let's call it Treatment X) 'get better'. There are several obvious questions:

 

(1) who says the kids 'got better'? If it's parental judgement, then the parents could be expecting the kids to improve, so they will look for signs of improvement. Likewise, if the inventors of Treatment X are doing the testing, the same thing applies. Note that neither the kids nor the inventors have to be dishonest for this to happen. They can be scrupulously honest, and there still will be a potential biasing effect.

 

(2) maybe the kids improved not because of Treatment X, but simply because they were doing something out of the ordinary. In other words, Treatment X could be anything at all and you'd still get the same result. This is called the placebo effect.

 

(3) maybe the kids got better simply because they were growing older and the same results would have occurred whether they were given Treatment X or not.

 

The only way to get rid of these problems (and believe me, they are major problems in testing the effectiveness of treatments) is to run a controlled blind study. What this means is that you have at least two groups of kids. Before treatment starts, you create these two groups from a larger sample of kids with ASD and you make sure that the members of the two groups have the same level of ASD and are similar in age and any other measures you think are important. This is called creating matched samples.

 

You then give one of these groups Treatment X and the other another treatment. At the end of the study, if the kids with Treatment X show more relief of symptoms than kids who received the other treatment, then this is evidence that Treatment X works. You can't say that this is because of a placebo effect, because both groups of kids received some sort of treatment. And similarly, you can't say that it's simply because the kids were getting older because both the groups got older at the same time. This is the so-called controlled part of the study.

 

However, you still need to be sure of your measurements. And to be certain you're getting accurate unbiased measurements, the people who test the kids before and after treatment must have no idea which kids belonged to which groups. Thus, a psychologist or pediatrician sent to examine the children can't be biased by knowing whether the children belong to one group or another. They simply must report on what they see. This is the so-called blind part of the study.

 

If you run a controlled blind study and you find a result, then and only then can you be certain that a treatment works. Until then, there will always be a question mark over whether there are errors in the measurements, potential bias, etc. Please note that I am NOT suggesting any wrong doing in the case of parents etc who report that there kids did wonderfully well following treatment. I believe them and am happy for them. BUT: for results to be accepted by the scientific and clinical community, we have to adopt rigorous standards of assessment.