AIBU to think this is child abuse

[hipposarerad]

www.theguardian.com/society/2018/apr/27/more-than-120-homeopaths-trying-to-cure-autism-in-uk

Homeopaths are offering a treatment which involves inducing diarrhoea, fever and other symptoms in autistic children order for them to eliminate 'toxins' and 'vaccine damage' in a bid to 'cure' autism. They advocate not doing anything to alleviate the effects of the treatment (which includes higher than recommended dose of vit C, among other claptrap).

I have never had much respect for homeopathy, but have thought that if people want to spend their money on placebo then fine, it's their money. But this is another level of disingenuity and exploitation.

I've tweeted this to the NSPCC, I hope they respond to me with their thoughts.

I'm feeling very upset by this. Am I, as parent to autistic children, being oversensitive? Is this OK?

That is horrific!
I am totally appalled.
And as for the poor child who's "autism came back after taking medicine to stop the diarrhoea"
No. He was probably just so lathargic and ill feeling his autistic traits couldn't been seen.
I honestly am shock this is allowed.

I was alerted to this thread thanks to this tweet: twitter.com/UKHomeopathyReg/status/990717262792417280

Snappymcsnappy asked "Are we sure it's homeopathy...?"

This is a good question. Only "qualified" homeopaths are allowed to go on the CEASE therapy course at the moment (events.r20.constantcontact.com/register/event?llr=nupaa7pab&oeidk=a07edu9lw7l4988d6ec), so it is currently only offered by homeopaths. The intervention uses homeopathy alongside other non-homeopathic treatments.

As far as I'm aware the majority of CEASE therapists possibly aren't members of the Society of Homeopaths (SoH) - so reporting them separately to the ASA, Trading Standards or the MHRA may well be worthwhile. The article in the Guardian references the fact that the SoH has a register of members which is accredited by the Professional Standards Authority (PSA). The SoH and PSA should be ensuring that homeopath members abide by the society's regulations concerning misleading advertising.

The PSA has re-accredited the SoH's register (goodness knows why) but they were made aware last year of the problems with CEASE therapy (being offered by some of the SoH's members - "RSHom"s) and have now taken action. Maintenance of accreditation requires the SoH to keep a better eye on the claims made by their members offering CEASE, there are a few other provisos as well. The PSA's report on the reaccreditation is here but I've excerpted some bits in my blog post linked at the end www.professionalstandards.org.uk/docs/default-source/accredited-registers/panel-decisions/annual-review-panel-decision-soh-2017.pdf

The Westminster Commission on Autism published (March 2018) their findings on harmful interventions for autism which may also be of interest westminsterautismcommission.files.wordpress.com/2018/03/a-spectrum-of-harmful-interventions-web-version.pdf. A few of us are keeping an eye on CEASE therapy, I've blogged about it myself here brodiesnotes.blogspot.co.uk/2018/02/better-monitoring-of-homeopaths.html - it's a nonsensical 'treatment' and a waste of money.

I reported 5 RSHom members offering CEASE to SoH, nothing much happened so I raised it with the PSA. Didn't realise at the time that others had already made contact and things were moving along anyway so I don't think my report made a great deal of difference. It's been several months and still the website make the same claims, but the SoH has to respond to the PSA within the next few weeks or so, hopefully there'll be some changes.

Sorry if I've hijacked the thread a bit but I hope the addition is helpful :)

Jo

@sharkirasharkira I stand corrected, clearly there are some cases where what I said doesn’t apply. You’re right, and I’m sorry.

For anyone a bit mystified, ABA deserves and probably has its own thread. There are various ways it is done. See https://en.m.wikipedia.org/wiki/Appliedbehaviorr_analysis
Some claim you can virtually train the brain to be less autistic and advocate doing drills for lengthy periods of time (there's a consultancy in the U.K. advocating 6 hours a day 5 days a week - although that could mean typical school hours for a school age child). This claim is difficult to prove or disprove, but sounds hokey in terms of neuroscience. To parents still reeling from an autism diagnosis or the suspicion of it this claim can sound like a cure and if you've been through early years with a low functioning autistic child, you are desperate for anything that will make it a bit better for them and for you. I would not have gone down this route, but I know of people who have.
My own DS's experience is that using ABA for specific things like being able to give up lining things up to move over to his workstation in class has been really effective and no different to all kinds of parenting techniques where you offer a reward, but insist that the end result is achieved.

Thank you for saying that Smeddum, I know you weren't trying to be offensive or anything

Sometimes it is a bit frustrating because you feel like not only are you up against the rest of the world but also the rest of the autism community in a way, because being at the severe end of the spectrum is so different from being in the middle or at the high functioning end. Even those who know autism and what it's like don't really know. I went on a course once and the difference between my experience and all the others was stark and extremely disheartening. It was almost like it's not even the same condition!

I've commented on posts about cures before and been absolutely ripped to pieces by autistic people and parents of autistic children who find the idea abhorrent and say they would never take a cure because it's who they are. Fair enough, but that is their choice! That's the whole point! They can express that, whereas there are many who can't and it's those people that a cure would be helpful for. No one is suggesting (I think) that every single person with ASD be force fed a 'cure' they don't want.

Virtually everything you see in the media about autism is about or by high functioning people (for obvious reasons). Severe/low functioning autistic people don't have a voice.

Anyways, I don't want to derail the thread - yanbu op, I appreciate that parents who are desperate may have to make unpleasant choices sometimes but there is a point where it becomes detrimental rather than helpful. Causing pain or distress is not on.

Coyoacan I'm sorry that you feel the need to go on the defensive and speak up for homeopathy, but this isn't an attack on the practice of homeopathy in general. This issue is about a 'treatment' that is being offered by some homeopaths in the UK - some of whom are not even members of the Society of Homeopaths. So to answer Snappymcsnappy, I'm sure this definitely isn't homeopathy at all.

seems to contradict your Op, where you say:

Homeopaths are offering a treatment which involves inducing diarrhoea, fever and other symptoms in autistic children order for them to eliminate 'toxins' and 'vaccine damage' in a bid to 'cure' autism. They advocate not doing anything to alleviate the effects of the treatment (which includes higher than recommended dose of vit C, among other claptrap).
I have never had much respect for homeopathy, but have thought that if people want to spend their money on placebo then fine, it's their money. But this is another level of disingenuity and exploitation.

Homeopathy can indeed cause problems if wrongly used. However, there seems to be a lot of confusion on this thread.
"It's a placebo, just sugar pills and it doesn't work" or "it causes diarrhoea, fever and other symptoms, it's child abuse and should be banned".

Which is it? Because it can't logically be both.

For Tanith and anyone else other wondering - CEASE involves homeopathy, high doses of vitamin C and other supplements and dietary restrictions, so it's not just homeopathy by itself. The intervention is offered only by homeopaths though, some of whom are RSHoms (members of the Society of Homeopaths) and some who aren't.

While homeopathy by itself is pretty much 'just sugar pills' unfortunately many homeopaths promote some harmful and wrongheaded ideas (including the notion that autism is caused by vaccination) and as a sector they make a lot of wildy inaccurate misleading marketing claims.

Homeopathy can also be indirectly harmful if someone chooses to take this (a non-treatment) when real medical advice is needed. Rarely, homeopathy can also be directly harmful if the process used in making the 'remedy' is poor - this recently happened in the US where manufacturers had to withdraw teething products that were found to contain inconsistent amounts (indicating problematic processes) of harmful compounds.

Jo

Tanith ill try to clarify: the CEASE treatment is being offered by some homeopaths who may or not be members of the Society of Homeopaths. Therefore, just because a homeopath is offering the treatment it doesn't automatically make it a homeopathic remedy - it might include a bit, but it also includes high dose vitamins and other things, which I don't think is a typical homeopathic approach.

So, many here (including me) feel that homeopathy is mumbo jumbo, but essentially harmless... Whereas the CEASE therapy as offered by some people who call themselves homeopaths is not only not really homeopathy, but is also causing harm.

Or to be more succinct, what JoBrodie said

sharkirasharkira I know there are people who would jump at the chance of a cure for those autistic people who are suffering and unable to communicate their distress. There's nothing I can say that won't sound like empty platitudes, but for what it's worth my heart goes out to them and you.

This makes the fact that nonsense such as CEASE and other treatments are being peddled off the back of the heartache of others all the more repugnant.

JoBrodie hijack away - im happy that there are people who are better informed than me who can supply good information.

Last one from me for a while:

NAS responded to my message. The person who responded said that as an autistic person they agreed with me, and also that the issue was under discussion.

It may have been a "yes we know now please bugger off" response, or maybe not. I'll keep my eye out for updates.

thats frightening i hope noones taken in by it.

Homeopathy can indeed cause problems if wrongly used.

You could drown, I guess ...

Thank you for saying that Smeddum, I know you weren't trying to be offensive or anything

I wasn’t but I wouldn’t have blamed you for being annoyed or upset with me so thank you for explaining. FWIW I wouldn’t ever argue with someone in your position who wants to alleviate their child’s suffering and distress and in fact feel very angry about people targeting parents in your position to make a quick buck.

The people I take issue with are the ones shouting for a cure because they wanted a “normal” child and aren’t happy they got an autistic one instead. Sadly this isn’t an uncommon thing, and it’s entirely selfishly motivated, whereas I read your posts to be completely about wanting what is best for your child which is the total opposite of selfish.

Autism is not a condition that can be 'treated' in this way. Homeopathy is largely discredited.

YABU to still believe that vaccines don't have any link to autism whatsoever...inshapetoday.com/now-official-fda-announced-vaccines-causing-autism/

YANBU that some of these cures are not safe etc.

Regardless of any of this, shouldn't we, as a society, be asking a lot more questions as to why so many children are autistic now? And it's bollocks to say it's just better diagnosed etc.

Homeopathy is largely discredited.

Not really .

That said, whilst it's obviously a crock of shit of the highest order, it's not impossible that it might do some good via the placebo (or nocebo) effect ... we wouldn't want to throw the baby out with the bathwater, would we .

It's when charlatans convince people that all they need is a few drops of (eye wateringly expensive) water instead of those nasty cancer drugs (or whatever) that if can do real harm.

Regardless of any of this, shouldn't we, as a society, be asking a lot more questions as to why so many children are autistic now? And it's bollocks to say it's just better diagnosed etc.

Why ?

My DW has Multiple Sclerosis which appears to have increased in the past 30 years. But the reality is very much that a better understanding and technology (such as MRI scans) has enabled doctors to diagnose it much early in it's course. It used to be people could go many years without a diagnosis, as MS can mimic a lot of other conditions. (DW was initially diagnosed with carpal tunnel).

So unless there is proof that something is "causing" autism, it seems perverse to just decry improved diagnosis.

(Many years ago, I read an interesting suggestion that MRI scans caused MS, as so many people seemed to get diagnosed after having one ...)

StarUtopia - Nope. Here's a credible article explaining a piece of information regarding voluntarily reported, anecdotal information .

www.acsh.org/news/2017/11/20/another-false-vaccination-autism-linkage-fringe-12174

Please don't hijack the thread with antivax superstition.

Regardless of any of this, shouldn't we, as a society, be asking a lot more questions as to why so many children are autistic now? And it's bollocks to say it's just better diagnosed etc.
Hmm, MMR didn't exist when I was young and yet I have a diagnosis, as did my father (b1932) and my Uncle (b1938). So let's not go there.
Of course it's better diagnosed now, and there's been a huge population increase, put the two together and what you have is a logical increase in diagnosis. hmm

And it's bollocks to say it's just better diagnosed etc

Someone who equates autism with vaccines has an absolute cheek to say anyone else is talking bollocks

And there was autism before, it just wasn’t recognised and supported (even now there’s a long way to go) but people like my grandad, my dad and uncle, and I struggled. I’m pleased my children don’t have to.

Someone who equates autism with vaccines has an absolute cheek to say anyone else is talking bollocks
^
This!

I'm another one with an undiagnosed relative. My late father was born in 1946 and was described by most people as 'eccentric' or a 'bit of a character'...He was probably also described as a 'weirdo' or 'oddball' - In any case (and admittedly with no qualifications whatsoever) I have posthumously diagnosed him.

Given the similarities I see between my dad and my boys, and what I know now about autism (still not much but more than previously), I'm certain he would have been diagnosed had he been alive today.

MMR vaccine was once blamed for an autism 'epidemic' - well my dad never received that as it wasn't available before the 1970s. So now that's been discredited it seems there are many who would blame vaccines in general - all of them I presume, I mean, he could have had been immunised against diptheria, whooping cough, maybe polio, so I guess it was one of those then

Going back, some people were convinced that mercury fillings caused MS. No doubt about it. Anyone who said otherwise was part of the "cover up".

The problem with that was my DW had never had a filling in her life. (Apparently she was either lying, or didn't remember them ) When she showed people her teeth, she was then accused of "not having MS".

It's entirely possible that I've had my fill of quacksters and idiots ...