Have dx removed - how? And do I need to? Advice please.

[YinLi]

I need a bit of advice and I hope someone here could help me.

DS, now 8yo was diagnosed with moderate ASD at the age of 2.5 (and we were warned that it could be upgraded to "severe" later). He was non-verbal, wasn't toilet trained, had constant meltdowns etc. Then when he was 4 we all moved abroad (I also had DS2 and DD, twins by then) and we lived outside the UK until 2 years ago. Now we are back (in a different town), DS1 is in mainstream school with no support, he is academically bright, popular, we have no problems. But a friend of ours who knows his history commented a week ago that I should have his dx removed so it does not stay on his records and does not cause him problems in later life.

Does anyone know how to do this? Or if I really have to? Do I have to hunt down all the people who were involved in assessing him etc? Or should I just leave it? Can it cause him problems later? I'm a bit worried... any help is appreciated.

gosh what a thread, i dont have much to add ,only that it must be very hard to get the dx correct in a toddler, surely there is a vast difference in what is "normal" for children of that age, it must be common for mistakes to be made.or perhaps the dx of autism should have been a dx of aspergers. my ds has aspergers and is a stickler for rules. his problem at school was always other children not behaving in the way they were supposed to.He would have flourished in a school that was very strict about behaviour etc.it would not have been a cure but the routine,control of other children and everyone abiding by the rules he already went by, would have meant he would have fitted in (or perhaps everyone else fitted in with him then iyswim) but he would still have had aspergers.

Nope, if you're non verbal at 2.5 you're unlikely to qualify for a dx of Aspergers, as for Aspergers you have to have normal speech by 3.

It certainly is not normal for a child to be non-verbal at 2.5

Newsflash: beating a child who won't comply makes them comply ...think that's how they did it in the old days; that, and putting autistic people in asylums etc.

Complying isn't happiness. Physical punishment isn't being cruel to be kind; it's just cruel and (having seen this in my own family), I struggle to work out how a mother can allow a child to be 'punished' by someone against their own instinct. Also, a bright child who can learn to behave in a socially acceptable way, and even lose a lot of autistic characteristics on the surface by learning how to seem NT isn't 'cured'. That artist (Steven Wiltshire?) who went on TV claiming that he was misdiagnosed and 'wasn't autistic anymore' was an example of a very high-functioning person who had been taught and worked hard to remove some signs of autism. He's still (very clearly) autistic.

Sorry, but I don't get how your story is inspirational. It is great that he's made so much progress and I'm sure that the strictness, structure and close family aspect was very helpful (as it is for all autistic children) but I find the punishment aspects of your story quite scary, actually.

And "there is little room for being different" hasn't really got a place in modern, civilised society.

LOL as well at China, with its well-known record at respecting human rights, being the place to take our vulnerable children to be 'cured' .

pleasestoplying..i agree with everything you have said.i re-read the thread last night and found it all a bit disturbing .i could never allow anyone to punish my child (physically or otherwise) in order to make him fit in.

physical punishment is one thing, but i would totally be happy to learn how to be a more strict parent.

i know what the op was alluding to earlier, but i'm sure she wouldn't have consented if it was abusive.

"I cried a lot at night when DS got punished" doesn't actually sound like someone consenting so perhaps I should be feeling sympathy but it sounds to me like OP allowed random stranger (fake brother) to hurt her son for being autistic (at which fake brother was appalled ) and also allowed teachers to use the cane to hurt her son for being autistic.

A massive difference between being strict (which I am) and abusive. Hurting a child to beat the difference out of them is fucked up; allowing someone else to do it isn't much better.

Let's not turn this story into proof of the bullshit idea that autism disappears if you're strict enough. Otherwise we're just justifying the 'bad parenting = autism' crap.

pleasestoplying, that's the reason I'm not contributing to this thread.
I feel that you can train a child of average or above intelligence to comply if you frighten them and punish them into compliance. They learn to obey through fear. They tried it in the States with electric shocks used on autistic children, and the results encouraged the perpetrators to defend their cruelty as effective treatments.
I don't believe you can cure an individual of their ASD, but often with detailed unpicking of what the issues are for an individual, support, then working on resolving them, teaching, you can enable them to understand the NT world and what is expected. Give them a key to unlocking it.
My son is a lot less Aspie in his behaviour, manners and responses now.
He has learned many of the skills and knowledge that he needs to interact effectively with the world. He is still on the spectrum, it is hardwired into him. It is a veneer of NT that is getting thicker as the years go by.
I'm not being dismissive or looking for an argument, but I disagree that it is morally acceptable to use many of the things the OP mentions as a way of actively 'curing' an individual of their ASD.

Guys - please stop judging!

The SN board is not about judging other people!

The OP asked a simple question - should she get a dx removed. That's all she asked.

She didn't ask for your opinion on her life in China. Kids certainly sound happy to me if they keep on asking to go back to China.

Now you've probably frightened her off.

No one is asking you to do anything you don't want to your DC. But supporting the OP, offering advice, or keeping quiet is what you're meant to do on this board.

This is not AIBU.

And equally, those of you who said the dx must be wrong in the first place - that's so rude! You've never met the kid. And you certainly never knew him when he was 2 and got his dx. So you have no right to say that.

I've stayed away from this one but I absolutely agree Indigo

Now you see this is what confuses me with this thread. No this is most definately not AIBU this is a whole different section with understanding and morals.

If I posted on AIBU that my autistic son had a meltdown so I gave him a good hiding and locked him in his room (which I dont) or I beat him with a stick till he learnt to comply, I would be lynched and quite rightly so. Also in RL I would be locked up.

But on here we are expected to ignore silently and accept that ppl beat their kids??? It is allowed to be put in print??? very odd and very disturbing.

The OP asked a question about dx removal. Ok so that is a normal request for advice or help. But she mentioned curing autism and of course was asked how it was done or what methods/diet was used......she left herself open to a whole different discussion than the original dx query. One which is very very difficult to keep quiet on for moral reasons.

My post is not for the sake of an argument but I have to say if it is ok to put such things down on this board not just here but anyware on mumsnett...........well if I read more threads like this I would be gone. Infact I think I am going to give it a miss for a while.

'What interested me was that the host family/set up, seemed to be full of the expectation that her ds COULD conform/learn to get on in school. I personally think that the biggest challenge our kids have is the ridiculously low expectations people have of their capabilities'

This is what I took from the OP's posts too. I do not agree with corporal punishment. I have, perhaps preferred not to think about the type of 'punishment' and perhaps should have asked.

But I do think it is a very interesting post in terms of the expectations.

Expectations, and determination seem to have contributed to the OP's child's improvements. That underlies the methodology, which I 'probably' disagree strongly with. I say probably, because it isn't actually clear from the OP what the methodologies are.

I don't think that expectations to be NT are reasonable or even desirable, but it is SO refreshing to hear something other than that which I have been hearing for the last two years which is that my ds will never be able to do x, or can't do y, and that my expectations are too high when I KNOW and have demonstrated that they are wrong.

I (obviously) agree with Goblin and Coffee. Your 'veneer' description is spot on, Goblin.

To those who I've offended with my outspoken views, sorry, but I really believe in that quotation about evil flourishing when good people sit back and do nothing (not calling OP evil but that principle is something I really stand by). Just as I challenge racism and sexism when I hear it, I think that letting this thread's implications go by unremarked implies agreement with or condoning abuse. I am judging, absolutely; I'm not ashamed to be judgmental about physically abusing a disabled child for his disability. I'm also feeling pretty judgmental about those who've validated this as OK.

I don't think that I agree that we should only ever be hugs, hun and support on this board; we thrive from challenge and I agree with Coffee about a moral responsibility to speak up about something not being OK. I am much more concerned about vulnerable children's welfare and creating a society where abuse is not ok than in sparing the feelings of an adult.

I think I'll also step away now, though, as I've been pretty clear! We can all agree and disagree about things but, imo (and experience, in a family with all sorts of messed-up crap going on, including physical abuse), there are lines that shouldn't be crossed.

pleasestoplying...you have voiced my feelings far better than i could. thank you for posting.

Yy pleasestoplying

Another thank you for posting as you did

PleaseStop So you are saying is that what the OP has alluded too is barbaric?

Perhaps. I have to admit that I am not all that clear about what the OP means in terms of punishment. The naughty step is acceptable 'punishment' in this country, as is smacking (for some) and even withdrawal of benefits or toys etc.

But I also feel that some of what is delivered in the name of 'understanding and acceptance' in this country is barbaric and paves the way to misery, mental health issues and suicide in our SN children.

Meant to add, that just recently the stories on thsi board of abuse and neglect the first days of term on this board makes my blood turn sour and imo is akin to torchure.

well she states they use a cane, i would call that barbaric :(

'I am a bit reluctant to talk about the details because some of it would sure make people think of, well, child-rearing methods of eras long gone by.'

'I cried a lot at night when DS got punished (let me not expand...)'

' i.e. if they say you won't get lunch unless you do whatever (recite a poem), then they won't and you will go without food even if you are only 6.'

I'd like more details of what exactly the punishments and training involved before I decided whether I would be happy to subject any child to the experience. The evasiveness of the OP worries me.

Methods of 'dealing' with ASD have chnged over time.

20 years ago we were instructed by a Clinical Pyschologist to use the 'holding technique'. Basically, when the child refused to make eye contact or was having a meltdown we were told to hold them very securely and force eye contact - no matter how long it took until 'resolution' was reached, i.e. they calmed down, became passive and made eye contact.

We stupidly followed that advice. On one occasion ex-H and I held DS in a tight grip for over 2 hours while he struggled, screamed and spat at us, until he became passive.

Looking back that was completely barbaric. We stopped doing it very quickly even though he had been told by a 'professional' that this was the way to deal with our Ds's problems.

You can't cure ASD. Most children learn by copying their peers. ASD childrenm don't - they have to be proactively taught. A professor of developmental delay disorders explained to us that most children will naturally acquire social skills but even when these are taught to an ASD child they will have to learn to get through life by 'acting' the expected response to situations as this will never come naturally to them. He explained that the energy required to constantly 'act' your way through life can be exhausting.

You can't get a dx changed. A dx is simply the qualified 'opinion' of the person who has made that dx. I went into this in great detail as son was misdiagnosed with a very damaging dx and I was concerned that if he had to disclose it in later life he would be severely disadvantaged when it came to employment, insuranve etc. All you can do is to get a more recent dx that effectively overturns the original dx. I therefore obtained 2 later dxs from people with higher qualifications that rubbished (yes rubbished) the original damaging dx.

As a result DS no longer has to state that he was dx's with the damaging condition as I have documents stating it was a misdiagnosis.

Ypu know just wroting this has made me realise that we have been through the mill

At least these days ASD is more widely recognised and children are being diagnosed earlier in their lives which enables them to benefit from the help that my own DS was denied in less enlightened times.

I grew up in a family where punishment with a cane was normal. I went to a school where cane was used to punish children for disobedience, for not doing homework etc. So far, none of my brothers or sisters have shown any disturbing sign from the truma of getting beaten as a child (may be we are lucky). We all grew up to be successful individual. And sometimes we got beaten by our family members for just playing too loudly, or laughing too loudly. I look back and think-'why did I got hit then'? I actually did nothing to deserve that. Do I think it was barbaric? Yes, definitely to be beaten by an adult with a cane for not doing homework. It was normal practise everywhere, all my friends got beaten, the teachers beat us if we made a single sound at the classroom.

When I first looked at op's thread, I could somehow relate to it. I know a lot of children with behavioural issues behaved well because of the fear of punishment. I sometimes look at DS specially when he knows he is being naughty and still continues with things just to get a reaction out of me and think that if he got beaten with a cane like I did, he would never do this. I know for sure he would not do it because he got one slap from me in his life when one day I lost it ( I still feel guilty about hitting him) and he has never done the same thing again. He was so shocked about me slapping him that he did not even cry, but the emotional trauma of it was so huge that he actually was down with high fever for 3/4 days. We (me and my sisters) got beaten pretty much everyday, it did no lasting emotional harm to us. But because in our household, we don't use hitting as a punishment, it was a huge shock for DS just to get a slap.

Although I got beaten for little things growing up as a child, I don't look back at it as what a barbaric childhood I had. Because it was norm in every household, it did not occur to me that it was not right. Living in the western society, because it is not the norm, my dh gets horrified about how I was beaten as a child and infact would not talk to the people beat us if he meets them. Whereas I have forgotten all the beating and moved on, and talk to the people responsible all the time (it was normal to get beaten even by your uncles if you did not behave in my culture).

I am on Indigo with this one that we should not judge other cultures just because we live in western society. I have decided as a child that I would never hit my child like the way I got hit, but I dont' feel bitter about it. If you see my ds who is boarderline ASD (he has a dx of classic autism at 2.5 and has improved enough to fool people about his asd), you know that he would benefit from the somewhat strict discipline of my home country where we would not put a foot out of norm because of the fear of getting beaten. But I would rather teach him with love, and would rather him learn because he wants to, not out of fear.

I have just got back and been saddened by what some people have said. But also thank you for the kind words from several posters.

DS1's dx was not Asperger's or HFA. (As you say it's not easy to get a dx at 2.5 ys - do you think they would have dxed him with Asperger's or HFA at that age?) We were told moderate and were warned that it could be "upgraded" to severe later.

I am sorry but I will not be more elaborate on punishments (or in fact possibly about our life in China at all, maybe with the exception of diet and "light" things like that) as some responses on this thread have justified the reasons why I had not wanted to in the first place.

I would like to repeat what others have kindly already done for me: I came here to ask how to have a dx removed. I only told about China because people asked and I was not interested in propagating a cure for autism.

I would also like to reiterate (and this, too was mentioned by some kind person here) that all my children love China, we go back every year. All rewards in the house are geared towards "1 more day in China" and the children love their (ex-)teachers there and our friends. "Older brother" sadly died about a year ago - DS1 (who used to be disciplined by him) was devastated. We have kept a lot of customs from China which we practice here at home. The children periodically ask if we can move back there (in fact we have a rule that this is a forbidden request for birthdays and Christmas, we have had it so much) and DS1 has asked if he could have his Chinese name on the school books (we were all given Chinese names). DS1 also insisted that we call our rescue lurcher cè suo (I was away for 4 days and DH did not realise it means "toilet" ; unfortunately the otherwise incredibly stupid dog learnt it immediately and now answers to it much better than the official tái feng (which means hurricane).) Because of this we believe that the China experience has not damaged DS1 or our family as a whole and in fact now and then, late at night in bed DH and I still talk about moving back again for a while.

I apologise again if I have upset anyone with anything I said - this was not my intention. Again, thank you for the answers to my original question; and for the kind words on this thread.