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Met my first DAN-Style parent...

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I had the misfortune yesterday of meeting a DAN (Defeat Autism Now) style parent who was very vocal in his belief that Autism could be cured and that it had ruined (he used much stronger language I won't repeat here) his and his son's life. :tearful:

 

I felt a mixture of shock - I couldn't really believe what I was hearing :blink: - anger :angry: and also concern for his son as he was so adamant his son was a complete blight on his life. I did suggest 'accidentally' tripping him up with my crutch :whistle::fight: but this didn't go down so well!! :lol:

 

Now I've had some time to reflect on this, I'm actually more bemused than anything else I was feeling yesterday. I'm wondering what it is that leads some parents to feel this way about their children and what leads them into such a dogged belief in cure that they will believe things that are so obviously 'snake oil' (is that correct? :unsure:) cons to anyone looking in from the outside? :unsure:

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Hi

 

In honesty I can at times understand why some parents may feel autism has blighted their/their child's lives. I think that very much depends upon the extent of the issues. My son is 9 and he can been a lovely lad. However, he can be very unpredictable, abusive, challenging, etc etc. I actually feel for him - he wonders why no one wants to play with him, why he doesn't get invited to parties/sleepovers, etc etc. It saddens me that whilst I see the best of him, I also see the worst of him. He appears to some degree to be oblivious as to how his behaviour can affect others, but mre importantly him. Whilst he has some amazing qualities, life generally is far from easy. Just to be clear, I'm in no way making a generalisation, but rather trying to offer an explanation as to what you may have witnessed – a dad at his witsend and struggling to cope. In such circumstances (going through a particularly batch patch), it can be difficult to be positive.

 

Caroline.

Edited by cmuir

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Since we don't know what causes autism, I don't think you can dismiss proposed 'cures' as 'obviously' snake oil.

 

And autism can be a challenge that some families rise to admirably, and can destroy others. Depends on the child, the parent and the family circumstances.

 

cb

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Some of them have a different idea of "cure" to what you might think. They don't necessarily mean they want the child to stop having autism. What they sometimes mean by "cure" is for the child to learn coping skills and independence. I came across some people like this on the internet once and they all said I was cured, and that my current situation is what they want for their autistic children.

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I had the misfortune yesterday of meeting a DAN (Defeat Autism Now) style parent who was very vocal in his belief that Autism could be cured and that it had ruined (he used much stronger language I won't repeat here) his and his son's life. :tearful:

 

I felt a mixture of shock - I couldn't really believe what I was hearing :blink: - anger :angry: and also concern for his son as he was so adamant his son was a complete blight on his life. I did suggest 'accidentally' tripping him up with my crutch :whistle::fight: but this didn't go down so well!! :lol:

 

Now I've had some time to reflect on this, I'm actually more bemused than anything else I was feeling yesterday. I'm wondering what it is that leads some parents to feel this way about their children and what leads them into such a dogged belief in cure that they will believe things that are so obviously 'snake oil' (is that correct? :unsure:) cons to anyone looking in from the outside? :unsure:

 

 

Hiya.

 

What a shame that he doesn;t know it's possible to autistic and OK :-( Seems really illogical doesn't it. I think it comes from desperation to help our kids.

 

People trying to help their kids will even do things which defy clear logic and common sense if someone says it will help - or - if a 'professional' (real or not) tells them they are doing it wrong and they should do it like this, or they are deliberately making their kids life worse. I tend to blame the professionals who lead them to this rubbish, not parents, who usually are just trying to do what they have been told is best for their kid. Every parent wants thngs to be as good as possible for all our kids.

 

Parents NOT doing what professinals suggest can lead to anything from the disapproval of people with power over our kids lives, all the way to being accused of abuse. For example when my eldest was two I was told teaching her some sign language to support her spoken communication was abuse (!) Of course I just replied that *I think* it's abusive to deny a child a method of communication which could work for them - but what happens to parents who fall for this ######? Desperation. More medicalisation. more normalisation. More snake oils.

 

We live in a country where we think the 'best' thing for disabled fetuses is to kill them off before birth 'for their own good' - working from this basis, snake oil sellers are making a mint from the 'terrible' lives of disabled people, including autistic people (I mean disabled as in the social model sense, not as in that we are personally defective in some way ;-) )

.

 

Mamabear

Edited by mamabear

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And Mumble gets misunderstood again... :rolleyes: I was just trying to discuss what I witnessed and think about these opinions, that's all. I'd heard about people holding these opinions, but hadn't come face to face with them.

 

Since we don't know what causes autism, I don't think you can dismiss proposed 'cures' as 'obviously' snake oil.

Maybe I've used the term wrong. I though 'snake oil' referred to something that had been shown to be a scam/not work but was marketed to people's sense of fear and desperation.

 

And autism can be a challenge that some families rise to admirably, and can destroy others. Depends on the child, the parent and the family circumstances.

I wasn't saying it's not a challenge. But can you prove that it is the autism alone that has, to use your term, destroyed families?

 

Some of them have a different idea of "cure" to what you might think. They don't necessarily mean they want the child to stop having autism. What they sometimes mean by "cure" is for the child to learn coping skills and independence. I came across some people like this on the internet once and they all said I was cured, and that my current situation is what they want for their autistic children.

No, not in this case. He wanted to get rid of Autism, eradicate all autism, and autistic people, in all shapes and forms.

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I think he could be still stuck in the anger/denial stage of the process of coming to accept having a child with special needs. I think it is very hard for other people to understand the huge shock it is when you have a child with special needs...you have to grieve for the child you 'thought' you had and get to know and accept the child you have in reality.

 

Or he could be the sort of parent who is never satisfied with anything short of excellence (top school grades, top uni, top career).

 

Bid :)

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Maybe I've used the term wrong. I though 'snake oil' referred to something that had been shown to be a scam/not work but was marketed to people's sense of fear and desperation.

 

 

It does mean that, but some therapies have been shown 'not to work' with autistic people in general, when there is evidence that they do have an effect on some individuals. Since autism can have different causes in different people, we need to be pretty clear about what makes an intervention 'obviously' snake oil.

 

cb

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It does mean that, but some therapies have been shown 'not to work' with autistic people in general, when there is evidence that they do have an effect on some individuals. Since autism can have different causes in different people, we need to be pretty clear about what makes an intervention 'obviously' snake oil.

 

cb

 

I'd agree that some things help some children with autism (things like PECs etc), but there are other things where some see 'evidence' of things working when the perceived benefits and the connection between the intervention are very questionable.

 

Put it this way, if I was a parent and I came up with the idea of, say, 'eating chips therapy', and gave my son lots of chips to eat I could perceive 'results' that actually weren't there purely and simply because I was looking for and anticipating results. I could, in fact, unconsciously (or even deliberately, as 'part of the treatment') modify my behaviours in ways that were condusive to new behaviours (modifications in old behaviours) emerging in my child that were perceived as beneficial advances, but were in fact in no way connected to his increased consumption of chips. This doesn't apply only to 'behaviour' but academic achievement and all other aspects of a child's development... Certainly, academically, I know from experience that my own son often makes quantum leaps in understanding, and I've anecdotal evidence that this applies for many other autistic children too. Were I to introduce 'chip therapy' at around the same time that he achieved one of those leaps, it would be very easy to draw the conclusion that the leap occured as a direct result of 'chip therapy'. There could be other changes that occur not as a direct result of chip therapy, but because of new expectations implied by chip therapy - I might apply more rigid 'portion control' which resulted in him eating less, or by restricting his diet maybe provide him with the impetus to try different foods purely to avoid chips. table manners generally might improve as a result of introducing rules regarding chip eating.

 

None of these things would make chip therapy anything other than 'snakeoil', but if I could convince people they did, I could charge huge amounts of money for my 'secret', weaving more and more BS around the 'theory' to disguise the fact that it really wasn't verty much at all and to justify the workshops and seminars and training and etc etc. The more anecdotal evidence there was that chip therapy worked (and there would be, because other people would replicate the accindentals and incidentals I created accidentally and incidentally and perhaps add more of their own) the bigger my chip therapy empire would get. If it didn't work for some, I could either blame them - "you're not doing it right" - or the child - "there must be something else going on here, has he/she been checked for..." - or just say "well, there's no guarantees, it doesn't work for all and, no, you can't have your money back". Any of those, or combinatiion thereof, sound familiar to anyone?

 

There is one thing that is absolutely established about human psychology - you'll find it in any psychology text book, in any book about methods of 'con- artists' or snakeoil peddlers, or exposition of 'woooo' salesmen/women - The more an individual invests in something in terms of time, money and resources the more likely they are to 'see' results that aren't real, to reinvest further, to promote and endorse the product to others and to deny/be in denial about any negatives that might come to light. In that respect, Chip therapy could be a very succesful product - but its success would not prove it was valid, or that the results attributed to it were real. Spending five years intensively indoctrinating and 'normalising' a child and then claiming that any improvement in the child can only be attributed to the intensive indoctrination and 'normalising' is not evidence that intensive indoctrination and normalisation work, especially if the 'results' are being judged by the people who have invested their time, energy and money directly, or have profited from the time energy and money those people have invested.

 

My son has achieved far more than many 1000's of children who have had thousands of pounds, hours and energy invested in them under the guise of various therapies and interventions. You could say that's 'luck' or whatever, or even give him and/or me some credit for it, but one thing nobody with a vested interest in these therapies would do would be to accept it as evidence against the efficacy of these snakeoil therpaies. Which is odd, because statistically there are probably more kids like my kid, who have achieved sans snakeoil, than there are who can be conclusively shown to have achieved as a direct result of them.

Oh no, actually, that's not odd at all... it's what the psychology books tell us is perectly normal. :unsure:

 

L&P

 

BD

 

PS: My book on chip therapy will be available from 'Lulu' as soon as I've typed it. Just £19.99, and every copy comes with a voucher redeemable at iceland for a free 1kg bag of oven chips. If tyou really care about your child, pre-order your copy TODAY... :whistle:

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PS: My book on chip therapy will be available from 'Lulu' as soon as I've typed it. Just £19.99, and every copy comes with a voucher redeemable at iceland for a free 1kg bag of oven chips. If tyou really care about your child, pre-order your copy TODAY... :whistle:

 

I'm sure Macdonalds would be more than happy to sponsor its publication. :D

 

Mumble - did you get a chance to tell this parent what autistic people can achieve? Did you tell him about yourself?

 

Wouldn't swop my daughter for the world - I love being with her, I'm tremendously proud of her, even though life with her is a bit of a roller coaster ride at times! I have to say though that I've probably been in a similar position to this parent - especially in the couple of years after her dx. I think as Bid says, parents go through stages - in another couple of years this parent may feel differently.

 

Although I never went as far as seeking a "cure" - I would have wished an easier life for my daughter - still do. I have two children and I can see how one just sails through life and takes all the challenges in his stride and the other is in a state of continual low level anxiety and has to expend so much effort just to negotiate through one challenge, and that at the expense of something else.

 

As a parent you're continually having to readjust your dreams for your kids and that involves disappointment along the way. Statring with birth, for example: you had a boy when you wanted a girl. Or you wanted a ballerina and you get a child with two left feet. You wanted a professor and you get a plumber - and so it goes on. But as a parent of a child with a disability orlearning difficulty I think the adjustment is a lot longer and harder - depending on how that child measures up against the accepted norm.

 

K x

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My favourite snake oil story was told to me by Paul Shattock. He said the original snake oil was part of Chinese herbal medicine and came from Chinese water snakes. In the US it was made from rattle snakes. He swears that analysis of rattle snake oil shows very little of value whilst water snake oil is packed full of Omega 3s. He's a very plausible snake oil salesman, lol.

 

I would do anything to improve my son's life. He is far, far too vulnerable. We still work at things to help, won't ever stop.

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baddad.... Sooooo well put!

 

I left a forum a few years back... A DAN advocate basically told me point blank that because I had given my son the MMR shot, it was my fault he was autistic, and then basically told me that I was Abusing my son, literally and should have him taken from me because I had not taken him to a DAN doctor and started him on their highly restrictive diet ( never mind he was self limiting anyway due to hypersensitivity to smell/taste and textures).. and everything else they claim "cures" Autism...

I never received such a tirade of abuse from someone who was "autistic-ally Aware" as it were, normally that kind of abuse comes from the ignorant..

 

it was a real wake up call. A complete shock.

 

I now avoid anything to do with that side of it all. ( I see no reason to even debate it as it often can turn So nasty because of the emotions involved)

Do not even get me started on Jenny McCarthy and the whole "age of Autism" brigade...( the lovely DAN advocate loved and pushed the website and group Constantly)....

I do not see the "epidemic" that is being claimed....(having researched the history of autism, I have a better understanding now)

I do not see my son as a tragedy, my life was not destroyed when he was diagnosed. He brings me a whole new way of looking at the world and the best sense of humour... I wouldn't change him for the world... I am here to help, support, guide and make his life a little easier if I can, navigating the world.. but more importantly to raise awareness, to make the world He lives in a better place... so he can have a fulfilled life, like any one else...

Edited by mortisha69

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As a parent you're continually having to readjust your dreams for your kids and that involves disappointment along the way. Statring with birth, for example: you had a boy when you wanted a girl. Or you wanted a ballerina and you get a child with two left feet. You wanted a professor and you get a plumber - and so it goes on. But as a parent of a child with a disability orlearning difficulty I think the adjustment is a lot longer and harder - depending on how that child measures up against the accepted norm.

 

K x

 

Katherine,

 

 

I respect your honesty, I'm sure a lot of parents feel this way.

 

I know my mother did. she had many expectations of me and I felt them growing up.. I also didn't think I could meet them..

I was also adopted as a baby so therefore growing up felt it was almost " OK" that I couldn't meet my mothers expectations and in fact gave me the courage to go my own way...

so when my husband and I had children, maybe it was because we were both adopted or my feeling my mother's expectations growing up, but I can honestly say we had No expectations..

while pregnant, I honestly never had a gender preference for our children. We used to joke that as long as the baby sorta looked like us, it didn't matter and honestly only wanted healthy children.

So when our youngest was diagnosed, again, there was no "grieving" as some parents experience. we were actually revealed to know so we could then go out and get the support and knowledge to help him. He was healthy, he just has a condition and needs support....

I also think because my own disability "came out" , as it were( I have ehler -danlos syndrome) while I was pregnant, it prepared me a bit for his diagnosis.. and led me to have little to no expectations other then I want them to have happy and fulfilled lives, as every one else.. who they chose to be, what they chose to do- is up to them... Because I can't even compare to the "norm" myself, I guess it's not even a consideration to me in regards to my children.... plus, what's "normal " anyway!! LOL!!

 

I just wanted to thank you for your honesty... again, I'm sure many many parents feel the same and couldn't say so...

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