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"Miracle cures for ASD" Do you find these stories helpful?

(23 Posts)
jess1975 Wed 16-Oct-13 20:15:44

My ds has asd together with very severe learning difficulties. He's at special school and his functional age is probably less than twelve months. Well meaning friends and relatives keep telling me about various cures sonrise etc and how children with the same diagnosis as my son are now at grammar school and doing exceptionally well. I'm sure you've all heard similar stories. I usually just nod politely as without being negative I know my ds will never improve enough to leave specialist education. I'm just being realistic! He's getting lots of one to one in school from his therapists and we hope to start ABA at some point. I'm not sure whether I'm being sensitive as it's been a difficult year but sometimes I feel that others are suggesting we should re-mortgage our house, pack up our bags and move to America! I sometimes think that perhaps these children who have been "cured" from their asd and severe learning difficulties may have been in a better place to start off than my son is. He's only three but even at his school I've yet to meet another child like him.

sickofsocalledexperts Wed 16-Oct-13 20:29:23

They are all nonsense imho

The only things that work for DS (severe, plus LD) are ABA and melatonin

For my DSD, who was mild to start with, mainstream inclusion was the key.

I increasingly think there are two elements: IQ and autism - and my DSD was high on the first and hf on the second, whereas my own boy is the reverse and low-functioning on both sides.

However, I think ABA (and a lot of hard work on my part) have got my severe son a bit closer to moderate (or was it really my hard work, could it in fact be more that he started closer to moderate and anything I did was irrelevant, as he would have got there anyway? Who knows, but I do tend to think that if I had left him in the shitty non-ABA school, he would not have fulfilled the potential in him, ie would still be severe.

Rambling now! Sorry

StarlightMcKenzie Wed 16-Oct-13 20:38:27

Nonsense. There are some evidence-based therapies that an improve outcome and like most of these things their effect is strongest in those able to engage with them the most.

But cures, nope:

NameChange70 Wed 16-Oct-13 23:31:31

My son was diagnosed in February and I still don't know where on the spectrum he sits. I've never asked. Though I'm noticing big changes in him now he is more relaxed at ss. But it's never occurred to me to look for a cure or to question too closely how he came to be autistic. I have just accepted it and like the other poster said, I am realistic (hopeful but realistic). Parents of children with ASD are very vulnerable I think to the people out there who will want to exploit their desperation to find an answer. I don't believe I will see a cure in my lifetime and I'm not sure a reason would make me any happier (though if prevention is possible I guess that would be a good thing for future generations to not go through this type of pain).

Ifcatshadthumbs Wed 16-Oct-13 23:39:59

I don't believe in a cure but I think there are lots of avenues to explore to improve outcome. What that the outcome is will also very much depend on where you started.

I don't know if all or any of the things we've done with ds can be attributed to his progress maybe he would be exactly the same if we'd done none of it. It is was it is.

MariaBoredOfLurking Wed 16-Oct-13 23:54:02

There are very, very few conditions where an external 'cure' exists. Maybe pneumonia-antibiotics, or broken arm-plaster cast. Even then, the illness might have settled by itself, or might leave longterm consequences despite treatment.

We don't even yet properly understand what 'normal' child development is, nor how to best promote it. All this cure stuff is nonsense. Helping dc to learn, achieve, and perhaps overcome some of the more difficult autism symptoms, yes.

If a dc who already has challenges gets belly-ache or eczema from gluten /dairy /whatever, this holds them back, so avoiding irritants is worthwhile. And ABA can assist some dc a lot (at base, it's just mega-effective, very structured teaching). Communication adjustments or aids, dealing with sensory differences, allowing predictability/ structure... all useful for most dc. Meds for sleep, anxiety, or hyperactivity are sometimes helpful. But 'cure'... pure snake oil.

mymatemax Thu 17-Oct-13 02:05:07

NO, its all bollocks.
My son has brain damage that caused his ASD & CP.
Yes therapy & intervention help in the same way that a NT child receives education to enable them to reach their potential.

We have to do the same as any parents, we just do the best we can for our children.

Spiraling Thu 17-Oct-13 15:17:35

My nephew, severe LD, autistic, non-verbal, challenging behaviour. Struggled so much, in the right school for him swanage came on leaps and bounds. This meant he could go out - donut ting, discos for example, theatre, visiting London, tolerate his family. Considering where he was, the development in the right place, massive. Now his in the adult world well, I hope this gets sorted.

My sister says she has never met a child like C, not miracles but life changing improvements yes, but be prepared to fully enagage yourself and fight.

Barefootgirl Thu 17-Oct-13 16:03:07

I am absolutely no expert, but I think you put your finger on it when you suggested that these children who have been "cured" from their asd and severe learning difficulties may have been in a better place to start off than my son is.

Sometimes I think all you can do is develop a thicker skin and what I call a f*ck-off smile, which you flash sweetly at these interfering people while thanking them for their concern. They dion't know the full extent of your son's impairment (is that the right word?), they don't walk in your shoes, and they can't see how hurtful it is to think you're doing the best you can, only to be told that "everyone else" is doing something better and having better results.

Maybe your son's problems will change and improve as he gets older, maybe they won't, but he will still be your son whatever happens. There aren't many 3 year olds at grammar school anyway wink

ouryve Thu 17-Oct-13 16:31:03

I find them far from helpful. Children with ASD are not one homogeneous bunch. My nephew with ASD was non-verbal at 3, but is now flourishing in secondary, taking maths GCSE early, excelling at athletics etc. He had no special interventions. His story is compelling, but not a suggestion that doing nothing special, other than typical uk publicly funded interventions is the way to go for all children with ASD. His story is simply his story.

And realistically, many of the parents of kids with ASD in the US are having similar, if not bigger battles for appropriate education and healthcare for their children , compared with our experiences in the UK. Many of those who are getting provision over and above the typical special ed programs in schools there are paying for it - and I know someone who resorted to embezzlement to fund it, such was her desperation.

Pixel Thu 17-Oct-13 17:55:21

I think you are right. When ds was first diagnosed and I was being a bit over-zealous reading everything I could get my hands on, I read lots of 'how I cured my son' books, mostly american. They invariably resulted in the family teetering on the brink of bankruptcy and divorce because it was so all-consuming (for the mother usually anyway) and they had to fund absolutely everything. For a while those books made me feel inadequate that I wasn't doing 'enough' for ds, if only I sat on the floor and forced him to play with me for eight hours a day, or plunged us into debt to have therapists in our house on a rota, he might be ok.
But then I realised living in a happy family and nice home (albeit rented) was more important for ds than anything else so he'd just have to put up with us as parents and hope for the best! And once he started at his fab sn school I knew he was in the best place and all those books went on ebay.

jess1975 Thu 17-Oct-13 19:30:46

Thanks so much for all of your responses! I feel so much better already. The skin is certainly becoming thicker as the weeks go on. We had our first meeting today at his ss who are absolutely fantastic. He's settled so well and happy to be at school which for now is all we want!

buss Thu 17-Oct-13 20:10:50

I also agree the 'cure' stories aren't helpful and can send parents off in the wrong direction.
Children can appear to 'recover'; but how much of that is subjective due to the parent's desire for a cure that they've invested time and money in to work?

I think if my ds had had appropriate intervention at an early age when he was more willing to engage he may have been able to cope with mainstream and an academic education...but I don't know.

'We don't even yet properly understand what 'normal' child development is, nor how to best promote it. '
I like this and I'm going to use it next time MIL goes off on one about SN!

googlyeyes Thu 17-Oct-13 20:51:39

I get so angry with the whole snake oil industry that had sprung up around autism

I have never seen a severely (or moderately) autistic child helped one iota by any alternative treatment. Not by any objective assessment anyhow. What I have seen is countless parents spending vast amounts of money and energy (that could be so better directed elsewhere) chasing the dream of recovery. Often involving great discomfort to the poor child. Then as someone said they have to believe they are seeing improvements because otherwise they would have to admit that it had all been worthless.

It's all very, very sad

StarlightMcKenzie Thu 17-Oct-13 21:25:08

And then LAs can make the exact same case against ABA and imply it is snake oil.

ouryve Thu 17-Oct-13 21:46:53

I don't lump ABA in with a lot of the more controversial therapies, Starlight. Firstly, I've never seen it claimed to perform miracles. I've observed the SALTs that work with DS2 using straightforward VB techniques with him and they've been effective in moving him beyod his ritualistic behaviours. Plus, I took cues from what I'd learnt about ABA to get DS1 out of nappies, once he showed the physiological signs of readiness. It's a very intensive form of good educational practice.

I think there are benefits to techniques that can help an anxious child to cope or help an anxious parent feel more confident about communicating with their child with LDs or neurological differences. I'm strongly suspicious about anything that lays the blame for their child's differences squarely at the parents' feet, though and even more so about anything that offers "cures" (eg that psychoanalysis clinic that was mentioned on here, a few months back - guilty on both fronts and even more guilty for claiming to cure something that might not even exist in the child)

jess1975 Thu 17-Oct-13 21:48:35

Agreed wholeheartedly with googlyeyes! For someone to tell me that the boy who she knew that had been cured of his asd was exactly the same as my ds made me feel like the worst parent ever. It's almost definite the boy in question was wrongly diagnosed at the outset!

blueShark Thu 17-Oct-13 22:40:23

I dont believe in cure but in some improvements and DS has certainly benefited with lots of alternative therapies, however his PDA remaines. He is gluten intolerant but if he has lots of gluten he is jumping off the walls so there a certain nutritional and biomedical imbalance somewhere

zzzzz Thu 17-Oct-13 23:01:07

Ds is hugely different than he was at 3, but cured.....hmm you could no more do that than change his eye colour.

googlyeyes Thu 17-Oct-13 23:01:44

I guess the big difference with ABA is that it is an evidence based treatment. And it doesn't involve riding with wild horses and chanting with shaman. It's a bloody hard, painstaking slog at times but even for the most severe children it can work 'miracles' such as teaching them v basic communication or reducing their endless self-harm.

I have never heard an ABA practitioner promise recovery. If they did, then that would reflect pretty badly on their individual ethics. Not those of ABA itself

mymatemax Thu 17-Oct-13 23:14:45

its no different to claiming a cure for CP, intensive phsio, stretching & exercise, use of splints does reduce the effects of ds2 CP & enable him to achieve & maintain the best possible mobility for him. He still cant keep up with his mates, he still has CP, its not a cure.
no different to SALT, sensory OT, ABA etc. Gives the child the best possible chance of improving functional ability & quality of life, has varying success depending on the child,just the same as physio for CP.

Not a cure, just a treatment

googlyeyes Thu 17-Oct-13 23:47:02

What about things like chelation, oxygen chambers, high doses of anti-herpes medication, and diets that have been reduced to red meat and vegetables? All these I have seen inflicted on non-verbal children, using them as non-consenting guinea pigs, sometimes with life-altering, permanent effects.

Not in the same ball park as SALT, OT and ABA

Firsttimer7259 Sat 19-Oct-13 12:55:48

I'm v skeptical of these claims and think there's a huge range within asd and a huge variety of factors that may be contributing to improvements none of which is captured in personal stories or studies w v low n numbers. I have terminated the few privately funded interventions we tried because the therapists claimed that progress was linek to their input, i notice our NHS therapists lack such hubris. My dd is undiagnosed and healthy - I have no sense of her digestion being difficult so I don't moderate her diet. We do try ABA techniques but her response to such things is varied and we use what helps and avoid what upsets her unnecessarily. Those calculations may change as she geté older but I want her happy and confident enjoying familylife im her own way - some interventions made her angry and frustrated and she's only 3

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