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.

My DS is 16, bright and has Asperger's. He's heading off to college and A levels next week, having left mainstream without support.
His dx has been nothing but an asset to him, used to obtain reasonable adjustments for him when he needed them in school and when exams were taken.
What does your friend fear, and is it based on any actual knowledge or just a vague assumption that people won't want your ds if 'there's something wrong with him' ?
I'd keep the dx, but it is entirely up to you and him whether you go for disclosure or if it's just there as a key if you need it.

A dx is really owned by the person that has it, to use as needed. I think insurances etc ask Have you ever been dx with, rather than have you a dx too.

My db has all kinds of problems because he was dx with a terminal illness once that thankfully was treated.

He may well still need it in later life. My experience of autism is some weeks/months are great and we get by ok, but others it just falls apart.
I guess the thing is it will always be on his medical files, but you don't have to tell education about dx if you don't want it.

I can't see how it would cause him a problem - but if you are getting to the end of his education (ie at least 16) and feel he doesn't have ASD and want the dx removed I'd ask for an apptmnt with a paed and I guess they could remove it....

Do you think he used to have Autism and now doesn't?

And if so, what made it disappear?

It's possible he was wrongly diagnosed in the first place?

Thank you to all for your kind replies. I never imagined so many mums would respond!

Goblin: I see your point but maybe having a dx of Aspergers is different from moderate autism. Also, does your ds still have Aspergers? My ds does not score on any ASD scale, as he is.

lisad: my experince is that he was the kind of same while we were here (yes, there were better days and worse ones, but frankly, all were pretty awful, with a nonverbal kid screaming and soiling himself... :( ) but we haven't had any problems for years.

Mango: I don't know, but they said "moderate, possibly severe" - do you think they could have made a mistake on such a scale?

Indigo: If I said he used to have autism and now he doesn't, wouldn't that be against all western medical science? So I am very reluctant to say this . On the other hand, well, DH and I actually think... well... we think that that is the case. (I apologise if this offends anyone, please disregard if so. ) The short answer to what made the difference is that we moved to rural China. 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. Let's just say that in rural China there is little room for being different - and as none of us are ethnic Chinese and we could not speak Chinese, this was already way too much and DS could not "afford" to be any more different and had to just get on with it. :) (It was a bit embarrassing though, when he started speaking on the 2nd day of his schooling and we did not understand his very first word as it was in Mandarin. ) But the most interesting stuff is what he himself says about the time just before going to China and his first months there. Now and then he suddenly comes up with things, out of the blue, like "Mum... you know before China?" Me: "Yes?" DS: I thought I was the most important... but I am as important as everybody else, not more". (Mum goes: He also adores all the teachers he had in China (and before you ask, they use the cane) - actually, we go back to China every summer, all our children adore China and we have a complicated reward system (incorporating everything from school results to chores) and the end reward is "one more day in China" (we actually have to tweak it every year so we don't end up with half a year in China, we couldn't affor that, lol ) So... what I'm trying to say is that yes, we believe that the (admittedly quite extreme) change of being thrown into rural Chinese culture (which includes diet, oriental medicine first before western one, daily tai chi and lots of other things) somehow... well... made him not autistic any more. But again, I do not want to offend anyone, sorry if this sounds too... I don't know...

I think it may be an idea to make contact with the original Paediatrician who made the diagnosis and ask for a review appointment. It is good to hear that you son is doing so well now.

I'm not offended - I'm always happy to hear of things that work. It's great to hear a story like this!

Tell us as much as you can about what helped!

(I do believe ASD and a lot of other things can be cured)

I think if you really honestly think he's cured then it would be lovely to hear that officially from a paed.

I'm really glad to hear your DS is doing so well. Our DS has a communication disorder and doesn't hit all of the thresholds for ASD, despite having ASD traits. Our pead's advice to us was a 'watch and see' approach - as life gets more socially complex at key points (around 10 was one I remember, as was entering secondary school) she felt that there was a potential for his DX to change - what I think she was basically saying was 'he's not ASD, he's touching the fringes of it, there may come a time when the things that we expect of him increase further than his skills and that wider gap may lead to an ASD DX.' (I hope that makes sense)

So what I'm saying is that things may change for your DS in the future (obvs I hope not ) and having a previous DX on file may help you access help more quickly if he needs it. So I would wait till he is out of eduction, myself.

And I don't think anything 'bad' is going to come out of him having the DX on file. Hard enough to get people to read files when they're dealing with current issues.

Wow that is a truly lovely and amazing story. I wish you well x

Eviebaby: thank you for the idea: I will try to find the original paed.
Wilson: thank you for your reply: I see your point. However, DS is so different from what he used to be that I hope it was some fundamental change that happened.

Indigo - I've never thought I'd find someone else who thinks ASD can be cured! I thought that was a big no is the UK. I am happy to tell stuff - but I am still scared people will scream "child abuse" :(

I think part of the driving force was that in China respecting your parents is the foundation of life. Literally, because there is no pension system for the great majority of people and parents in their old age will be supported by their children. Generations still live together and for example my adult Chinese friends would still bow to their parents in the morning with reverence. Children see this (i.e. dad bowing to granddad) and talking to him with the utmost respect, so it's no rocket science that the same is expected of them. For example if a Chinese toddler is playing and mum wants him to stop, then this is what happens: Mum says toddler's name. Then waits until child makes eye contact. This is because the child may be lost in his play etc. Mum will say the name several times if necessary but most Chinese children look up on hearing their name immediately. Then mum keeps eye contact and says what she wants the kid to do, e.g. "put away toy, wash your hand". She says it only once, holding eye contact. Then the child is expected to do it immediately. And will be punished if he doesn't. Now this is very different from Western mothers walking into a room and repeating "time to ...." umpteen times, while the child may not even hear them and because everything is repeated many times anyway they have no reason to respond quickly. In the beginning we lived with another family, where we were to treat the man as DH's "older brother", his parents as our grandparents etc. Our twins were only 1 and did not need much "tweaking" :) but "older brother" and wife were appalled at DS1 and set to the task of giving him a proper upbringing and did not give him any leeway for ASD, or not knowing any Mandarin. By that time we had had 1.5 years of pure hell with ASD, so we stood back, although of course it was very hard and I cried a lot at night when DS got punished (let me not expand...). We always said I cried because I was homesick... To our utmost amazement, however, DS far from taking offense, started bowing to "older brother", did as was told (as older brother's children did) and sat quietly gazing at "older brother" when he was telling old Chinese tales to the children in Mandarin (at which even the 1-year-old twins were required to sit quietly).

The same is true for school and they take things seriously, 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.

(Sorry, this is getting so long...) There is also this philosophy that is present all the time: that community is more important than the individual. We are trying to cultivate a lot of this here in the UK, too: for example we have a 3-bed house but all our children sleep in the same room. This is because this way they have to all take care not to disturb each other and they have to keep the place tidy.

On a funnier note: the twins bow to DH and me every morning DS1 now only does it in phases and mostly when we are in China...

Thank you, Chundle!

It definitely wouldn't be the first time. My ds is 2 and has been given a "working" diagnosis as because of his age and some other things, they can't be sure. But right now he is moderate too. Just an idea as I don't believe personally that you can change the way a person ticks only help them adapt. Glad that all your efforts have been rewarded. Lovely story.

Actually I'm with indigo and yin - no one can tell me how this happens, medical science freely admit they know little about the brain and so I think all things are possible including cures. I think what yins case shows is that there is no one method for treating. As to dx removal if possible gi for a private appointment - I think you'll get a fairer assessment, nhs always so careful about litigation

Equally, you say that you believe he had asd and no one knows better than you. Sorry, hope my comments aren't offensive, just thinking out loud and probably wishing the same for my ds.

Never mind private appointments, if you really do want an 'undiagnosis' that trumps the original, you could get the original paediatrician to refer you to great ormond street high functioning asd clinic. Or even to baron-Cohens team in Cambridge.

Given this amazing story, I think their professors would be really interested and it's so unusual that I'm sure your local Nhs would agree you need a specialist clinic team for a tertiary opinion.

You might end up being told he still just about has aspergers, which would be a positive asset in many societies (China, Silicon Valley, some branches of academia) but in a uk mainstream state high school might mean he needs some additional nurturing.

Our consultant said he prefers to just say autistic spectrum disorder since children can slide so far along the spectrum in early years. And I'm sure a few slide over the border and end up as 'quirky' or 'traits'.

From your descriptions of normal Chinese child rearing, it seems quite asd-friendly ie structured, clear and immediate. The close attention to desirable v undesirable child behaviours and the conscious use of techniques to modify them is unusual here, unless a family is choosing to use aba or similar. Ideal for teaching a bright autistic child the rules of social interaction!

And don't fret about child abuse... If a child abroad is treated normally for their culture and age then it only counts as abusive if the old-fashioned treatment is carried on when they move to the UK. Though that guidance specifically excludes female 'circumcision' done on holiday or taking an underage companion to somewhere with a lower age of consent.

Obv your diet was also very different in China. Do you think that had any part to play? Have you made any dietary changes here in the UK?

What you described is how Chinese children are brought up. Have you read 'battle hymn of the tiger mother' - it got a lot of press over here. She wouldn't let her daughter finish her piano practice (or go to the toilet or eat) until she had mastered a piece...... And this book is set in America. So it still def happens here in Chinese families that live in the UK.

On this board a lot of us have had success at 'vastly improving' our ASD kids. Some with behaviour modification (ABA), some with diet, some with other alternative therapies. Loads of people here either claim their DC is cured, or vastly improved.

Well the closest we have here to what you describe is ABA and that is described as barbaric by many who don't understand it.

I agree, if you wrote a book about your experience I would buy it. It sounds utterly facinating.

Doesn't sound that different to our values in our family. We have strict rules, it's about respect and threats are followed though. We have a religious belief which helps alot and tbh it works well for us and other children that attend and have asd.
I believe that we have to teach our children that allowances can't always bemade for them and they have to learn to fit into nt world.
I know
Personally of one girl who was dx as classically autistic at two bit recently had it changed to asbergers.

lisad123

I believe that we have to teach our children that allowances can't always bemade for them and they have to learn to fit into nt world.

Well this is where from my perspective you have got it all very wrong. There is no such thin as normal, we are all different, and some are more different than others and we all have to make accommodations to meet all of the differences of others otherwise you are talking about a dictatorship like the Libyan people have just overthrown were all have to conform to a so called norm or be tortured until they are submissive. Which is not really about understanding our different needs of our fellow mad at all.

What you call the nt world has to make all of the accommodations to help the least able, and to understand their differences, otherwise you are preaching disability discrimination and promoting nt world bullying.

So who are you helping the children and others who need to be understood, or those in society who do not want to understand, as it is too much like hard work.

dolfrog, you are unfair to make those accusations.

Lisad does a lot to promote awareness of disabilities. But we do not live in a disability friendly society and to teach our children how to survive it as far as they are capable to learn to is essential. Only by becoming a part of the NT world do they have any chance of changing perceptions and education.

How could you ever do what you have done if you had not used the NT English language for example?