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AIBU?

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Original poster

AIBU to think this is child abuse

153 replies

hipposarerad · 28/04/2018 15:59

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?

OP posts:
Smeddum · 29/04/2018 11:19

While I agree with that somewhat, we do have a problem with "higher functioning" or Asperger voices being heard over "lower functioning" or Kanner's people. The media has become almost totally representative of one part of the community

I also agree with that, but unfortunately the voices of those claiming to speak for them are heard over actually autistic people. Sometimes the agendas concern me greatly.

Original poster
hipposarerad · 29/04/2018 11:23

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.

Smeddum - ditto everything you've said about autistic voices being pretty much absent from debate. I'm NT (probably) and I don't feel comfortable holding forth about what's best for autistic people in general because I really don't know shit about it from the inside. But when my kids start to express their opinions I'll take my cue from them. Not to mention the focus of so many interventions being to create a person who can present an NT 'front' in public, only for them to shut down/meltdown when at home.

UpstartCrow - yep. In the same way as a fraught parent with a teething toddler might get an amber teething necklace out of sheer desperation. They put the necklace on the kid, immediately their perception changes because of the unconscious expectation that it will help.

OP posts:
Gilead · 29/04/2018 11:27

I also agree with that, but unfortunately the voices of those claiming to speak for them are heard over actually autistic people. Sometimes the agendas concern me greatly.
Autism Speaks do not and will never speak for me or mine. I will never 'light it up blue' and get very angry that people mindlessly follow these things with little comprehension There is not one Autistic person on the board of Autism speaks. There was at one point, they were ignored and hounded out.

Smeddum · 29/04/2018 11:30

But when my kids start to express their opinions I'll take my cue from them. Not to mention the focus of so many interventions being to create a person who can present an NT 'front' in public, only for them to shut down/meltdown when at home

This! I agree wholeheartedly with this. I cannot abide the definition of “success” as an autistic person as being able to present as NT.

I can mask beautifully under the right conditions, but it is mentally, physically and emotionally exhausting. I struggle enormously with it, and find myself desperate to get home, where it’s “safe” where I can be me without judgement.

Smeddum · 29/04/2018 11:30

God I despise Autism Speaks, they are disgusting.

allthatmalarkey · 29/04/2018 12:48

Saw the article myself and have shared as much as I could to warn people away. The bit that is definitely abuse is where the child had to be put on Imodium because the parents were worried by what 11 days of diarrhoea had done to their child.

My son has preverbal ASD with SPF and if there's something that evidence says could make his and our lives easier, then I'm interested, but this is sheer quackery. Vaccines are one thing we can be sure are not linked to autism. Plus the rate of chicks mortality and infection-caused disabilities would be far higher without them.

As for ABA, despite its beginnings it can be very helpful - there are different kinds and approaches. My son gets some ABA along with other therapies and it has helped him AND done him no harm. The completely biased and uninformed moment in the Chris Packham documentary was the only thing bad about it.

allthatmalarkey · 29/04/2018 12:48

Spd not spf

Davros · 29/04/2018 14:46

As a parent, I had to make informed choices for my children, they now make those choices
Well that's not going to happen for my DS or for many others I know. That's why I, and many other parents I know, are concerned about the vocal "high functioning" and the media. People think they know lots about autism because they are seeing much in the media about people like Chris Packham who is unable to represent the other parts of the spectrum, not just because it isn't his personal experience but very much due to his own form of autism. I was on the Council of the NAS for some years and they bent over backwards to support people with autism on the Council. However, it could be tricky precisely because of their type of autism. Catch 22

Original poster
hipposarerad · 29/04/2018 14:52

allthatmalarkey it baffles me how the vaccine=autism myth endures, it's caused so much trouble.

I confess I don't have any direct experience of ABA but I gather there's the quite aggressive forcing of patients to conform as practiced in the past and seen on Chris Packham's documentary (and I think still might happen in other countries), and there's a gentler version that is more about helping patients to cope... I think, but as I said I don't know so am happy to be corrected.

OP posts:
Davros · 29/04/2018 15:03

I'm rather surprised to see such misinformation about ABA in this day and age. It did start out, in relation to autism, using aversives but that had all changed by the time we were using it in the 1990s. We started a home programme because Gillian Baird, highly regarded Autism consultant, suggested it. t's a shame this is resurfacing from what sounds like distorted practices and agenda of other sorts

WibblesWobbles · 29/04/2018 15:41

Channel 4 ran a recent documentary on autism and had an online quiz so people could check if they might be autistic, nothing surprises me anymore Hmm.

Smeddum · 29/04/2018 15:42

I don’t know anything about ABA so I’m not able to comment, could someone fill me in please?

NaughtToThreeSadOnions · 29/04/2018 16:24

davos chris packham went to an ABA school in the states very reaently for his documentry and the founder allied not 7sing ABA to not giving a child with Cancer Chemo and when chris asked if would cure autism he answered yea thats the panacoea. To me that kind of view is very very scary

I know what is used as ABA in the uk and ireland is not the same as prehaps in the states but the theory vehind Aba is worrying sorry i

greathat · 29/04/2018 17:13

Any mention of homeopathy makes me think of Tim minchin's song m.youtube.com/watch?v=RFO6ZhUW38w "if you open your mind too much your brain will fall out".

DGRossetti · 29/04/2018 17:16

It's easy to demonstrate homeopathy is a crock. Pay your homeopathist with homeopathic money. It's a piece of paper that can "remember" being a note. Mysteriously, they won't accept it ...

Original poster
hipposarerad · 29/04/2018 17:39

WibblesWobbles I pulled the same face at the 'Are You Autistic' programme. I think that would have been better as the first episode of a series - it was very oversimplified for a stand alone thing.

OP posts:
Gilead · 29/04/2018 17:51

Davros, I did point out that there are others able to speak. I have no problem with parents advocating for their children providing it is done with the best interests of the children in mind. I can see you have some concerns about those of us who are vocal in the community, but most of us try to be inclusive. I'm afraid I can't help with regard to the media, there are very few people with a real understanding of the Autism Community.
As for ABA I did start with pointing out that it in most cases it's different here than in the US. The Judge Rotenberg Centre, among other places needs closing down.

Davros · 29/04/2018 20:24

Chris Packham or his producers must have gone out of their way to find that abusive-sounding ABA setting. ABA originated in the USA and Norway in universities and slowly became a service more widely available. It is a teaching method using positive reinforcement that progresses according to data that is taken on the responses of the child. Nearly all SEN settings now use "behavioural methods" but the authorities won't acknowledge that they've cherry picked from ABA and sometimes come up with a woolly version. Having said that, a good ABA setting should include other activities that make sense and may have benefits, e.g. physical activity, community outings, down time - ours did

Gilead · 29/04/2018 20:36

Davros, that's not the case. Packham didn't need to go out of his way. This is common in the US. the Judge Rotenberg Centre is one of many, as is the one Packham found.

Davros · 29/04/2018 21:05

It must have been massively bastardised and distorted then. In fact probably not recognisable ABA.

Gilead · 29/04/2018 22:12

It's called ABA in America, Davros. It's grim, it's abusive, it's cruel. What we do in Britain is very different, as I keep saying. Seriously, look up the systematic abuse that goes on at Judge Rotenberg.

NaughtToThreeSadOnions · 29/04/2018 22:16

No Davros what is used in Britain and Ireland and labeled as ABA is not recoinsable as ABA

sharkirasharkira · 29/04/2018 23:33

Because unless you are actually autistic, or your autistic child has said they want a cure, you’ve no right at all to call for one. It’s that simple

Sorry, but I don't agree. It's not simple at all. I fully appriciate that there may be lots of autistic people, or parents of autistic children, who would not want a cure and that is completely their decision. But that is some, not all. Not everyone with autism is able to express themselves or what they want.

My DS cannot ask for a cure. He can't ask for food, a nappy change, or tell me when he is in pain. He is not just 'wired differently', he is profoundly disabled, and as such is completely unable to access a huge part of the human experience. He is cut off from a lot of the things that make life so enjoyable. No amount of the world changing to become more accepting of autism will change that for him.

If I could give him a cure I would in a heartbeat.

Davros · 29/04/2018 23:43

The ABA that we used, and many other parents used in the UK in the 90s and ongoing, is based on American ABA. But I mean "real" ABA, not some new distorted version. Our programme was even supervised by someone from an American university. Look at the book "Behavioural Intervention for Young Children With Autism" by Green and Luce. This is a fairly academic guidebook to ABA and most programmes, here and in the USA, were based on it. Whatever has happened since then and calls itself ABA cannot really be ABA if it is cruel or abusive. It goes against all the principles of positive reinforcement and capitalising on what the child enjoys and is interested in. Even in my day there had started to be a lot of bandwagon jumping and "branding" but, as with the snake oil treatments, you had to stand firm and follow the path of evidence-based interventions which included ABA.

Davros · 29/04/2018 23:45

sharkirasharkira agree 100%