My feed
Premium

Please
or
to access all these features

Here are some suggested organisations that offer expert advice on special needs.

SN children

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

28 replies

jess1975 · 16/10/2013 20:15

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.

OP posts:
Report
sickofsocalledexperts · 16/10/2013 20:29

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

Report
StarlightMcKenzie · 16/10/2013 20:38

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:

Report
NameChange70 · 16/10/2013 23:31

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).

Report
Ifcatshadthumbs · 16/10/2013 23:39

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.

Report
MariaBoredOfLurking · 16/10/2013 23:54

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.

Report
mymatemax · 17/10/2013 02:05

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.

Report
Spiraling · 17/10/2013 15:17

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.

Report
Barefootgirl · 17/10/2013 16:03

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

Report
ouryve · 17/10/2013 16:31

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.

Report
Pixel · 17/10/2013 17:55

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.

Report
jess1975 · 17/10/2013 19:30

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!

OP posts:
Report
buss · 17/10/2013 20:10

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!

Report
googlyeyes · 17/10/2013 20:51

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

Report
StarlightMcKenzie · 17/10/2013 21:25

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

Report
ouryve · 17/10/2013 21:46

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)

Report
jess1975 · 17/10/2013 21:48

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!

OP posts:
Report
blueShark · 17/10/2013 22:40

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

Report
zzzzz · 17/10/2013 23:01

This reply has been deleted

Message withdrawn at poster's request.

googlyeyes · 17/10/2013 23:01

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

Report
mymatemax · 17/10/2013 23:14

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

Report
googlyeyes · 17/10/2013 23:47

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

Report
Firsttimer7259 · 19/10/2013 12:55

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

Report

Don’t want to miss threads like this?

Weekly

Sign up to our weekly round up and get all the best threads sent straight to your inbox!

Log in to update your newsletter preferences.

You've subscribed!

jackwanger · 10/04/2020 06:54

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

Famalam24 · 18/10/2020 09:59

Hello Everyone

I am writing this long post maybe to get some advices some help!
First thing is health visitor and Gp has already refused to reffer him to peads as he is 18months
And second thing i am already on medication for my anxiety under my psychiatrist care

Ok so,i have got cute bubble 18months old,who was very very laughing and smiling baby from the start everyone used to say how friendly he is and he was literally i have never seen baby like him his over friendliness concerned me many times
Anyways, when he was 8months old i had to shift home and meanwhile that i came to know i was expecting and and that was a complete surprise i was having really rough patch that time
Tbh,i put him on tv for cocomelon and i got bussy with my sickness and had to be admitted many many times meanwhile it was all lockdown and my son was on cocomelon from morning till night while my husband was bussy on netflix and i was completely on bed
When he got 16months and i had a girl i all of the sudden started to think that there is some issue going on with him he was like kinda in his own world amd very very aggressive
I turned his screentime off rightaway,after 2 months i am writing here
Well, he doesn't point not to ask not to show he doesn't point AT ALL,how he let me know his needs? He ll go to table or kitchen and if he see something he will put his whole hand there and will screm while looking at me in a particular tone, when he play or see something new he looks at me with amazed eyes, not everytime but 50% of the time
Like if i am cooking he is sitting there and will look at me and will look at stove, he ll see something on tv he ll look at there and then look at me with amazed eyes
When he do hi five with anyone he looks back at me to get appreciation
If he do something wrong he ll look at me instantly for my reaction but still he doesn't point
He is non verbal only babbling and sometimes many sounds and jargon
He doesn't do pretend play but sometimes brush her sisters hairs or my hairs with brush or try to brush his hairs, when he is having bottle he ll try to give that in her sister's mouth but doesn't do pretend play (he has rarley seen us doing anything thanks to Covid we are home restricted from march and i have just starter to let him in my world from 2 months)
He know what is coming up like if he sees bottle he ll go on his bed, if i am having jacket he ll open a door for me
His receptive language is very poor i guess he only knows about water, bubbles, shoes, ball, bear, brush, car, dodo (milk) ,
He ll go and get shoes ball etc if i ask him to bring them, in his gestures he do hooray, hi five, clapping,hugs my legs and spread his arms to ask me to pick up
He is very social, like loves people and play with cousins if they come like running with them but if they start playing something like puzzles etc he ll not join them
He has no noise issues, but hand flaps in excitement
He put his lips of sister head like kissing but will hit her suddenly as well, he takes me where he wanta me to do something for him, sometimes will hide and touch me run and hide somewhere his style of asking me to play hide and seek, he get me things to play like remote to play car, ball to play with him throwing and catching with him, bubbles to make him bubbles i know he can be using me as a tool
But i have seen other kids i feel like he is not having a conversation with me like two way communication like if he is standing and i ask something or say something he wont just stand there look at me and gesture something instead he ll look at me and pass by
He didn't recognize his name but from 2 months when i turned his tv off he is recognising his name now and ll turn back when i call him
He plays appropriately with toys,and if you ask him where is mam he wont look at me
He takes very much interes in rhyme when i say wheels on the bus of round n round he ll start doing round round with hands, if i ask him where is eyes? He ll put my finger on my eyes instead of his
He loves to play peek a boo with me, and social games


I dont know what to do now, i have called for privatr speech therapy as well but no they are not accepting him, i am at my wits end
I cry myself to sleep DAILY with all this stress i want to run away somewhere and never return, i feel too bad that why did i let him watch tv at the first place i am having a feel for ASD or ADHDH as he is kinda hyperactive as well
Please please give some advices, pour some success stories if you had or having a kid like him who is delayed

Thank you

Report
Famalam24 · 18/10/2020 10:01

Aah this wasn't was here could anyone help me and let me know how to delete this comment i wanted to make a post

Report
Please create an account

To comment on this thread you need to create a Mumsnet account.