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SN children

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Original poster

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

79 replies

YinLi · 03/09/2011 14:51

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.

OP posts:

eandz · 04/09/2011 15:33

YinLi

is there anyway I can go live with them with my DS for a year or two? I'll do anything. I'm desperate.

StarlightMcKenzie · 04/09/2011 15:55

eandz If you truly want that I suspect there are ways to arrange it or something similar.

But, - I suspect, knowing you that some of the childrearing ways that are used are ones you have had some experience of and ruled out as unacceptable for your ds.

Not saying they are unacceptable ways, just that you might find them so.

lisad123 · 04/09/2011 17:36

Thank you starlight
I do teach my girls who both have autism, that there are certain ways to behave in this world, autism or not they need to learn. It's hard work but I am not always going to be here to make allowances an no matter what we do the world has standards which they have to live by. When it's a hidden disability (I have two myself) people are even less understanding, and so if I can help male it easier for my girls by working hard while they are young I bloodily well will!!
And for your information, I run a support group, am a trustee of a autism charity and also work as a mentor for a young man with ADHD, so don't assume I hide disability, am at all embarrassed by my wonderful girls, or dare suggest I help others get away with being disablist

Jodianna · 04/09/2011 18:06

I'm not sure I'd be happy with a lot of this. I suspect an original misdiagnosis.
I don't like the idea of ABA. Rewards are fine, punishments are not.
As for fitting into the NT world, I see absolutely no reason why NTs should not learn to adapt to the way of Autism, as with everything else, it's about getting a balance.

lisad123 · 04/09/2011 18:11

well when my 3 year old gets to 18years old and still thinks acting as a dog when shes in stressful situations is acceptable I willjust say "well she has autism and so i didnt think i needed to teach her this wasnt acceptable"

dolfrog · 04/09/2011 19:33

StarlightMcKenzie

But we do not live in a disability friendly society

So we have to make it a disability friendly society, so that they do not discriminate against our differences, and making sure that they understand our needs and provide the accommodations we need.
So we have stop working to their discriminatory standards, and teach them so called (NT) how to live in an inclusive society.

I have to live with the discrimination from NT every day, as do most who have an invisible disability, but we need to stop accepting this discrimination and start to educate the ignorant, who live in the worlds of NT to hide their own differences.

lisad123 · 04/09/2011 19:38

Sorry but I'm not willing to offer my children as a sacrifice to the NT world so they can learn how to accept it. I will teach my girls how to fit in in this world however possible. We all have things we would rather do or not do, but we don't as we learn it's not acceptable, and while it takes longer and is harder as a person with Asd, it is possible to learn these skills.

dolfrog · 04/09/2011 19:43

StarlightMcKenzie

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

Each society has its own communication system, and each small group have their own vocabulary, peculiar to them. Which best suites their needs. So it has been about learning to communicate using their form of communication which for me can be very stressful, and demeaning. Because they are not communicating in or refuse to communicate using my communication needs.
This is why the APDUK web site uses multi-colured text so it is APD friendly and why my own web sites use pictures graphics and a few words to be more me friendly. But waht other web site uses ,y preferred type of layout, and the formatting options on this forum is appalling but that is all part of the society we live in, and those who need the most support and help are ignored. So we have to use their systems to fight our corner, while not falling for their marketing myths and hype.

Jodianna · 04/09/2011 19:53

erm, I'm sure I said it was about getting a balance. Turning them into 'fake' NTs isn't going to help anyone, NT or otherwise.

Teaching coping strategies is great, I'm really proud of my kids for the way they cope most of the time. I don't punish them when they don't cope or display Autistic traits. I talk them through it, and help them. Not to fit into the NT world but to be able to cope with whatever it is that they are having difficulties with. I don't think a little NT education goes amiss either. If there is a bit of understanding, maybe there would be a lot more help for those times when things do go pear shaped.

silverfrog · 04/09/2011 20:03

jodianna - I have been doing ABA with dd1 for over 4 years now. A home programme, followed by one ABA school, and sh is about to start at another ABA school next week. She has never been punished while on her ABA programme, and absolutely certainly not for "being autistic" or showing traits/stimming. I do wish that this negative association was not always brought up - dd1's school nver used punishment, nor does ehr new school (nor did/does another school I have viewed). the consultant we use does not use punishment - it is not somehting that is intrinsically linked to ABA.

AlysWho · 04/09/2011 20:11

Gosh I'm a bit shocked at what I've read on this thread- the (yawn)aba debate aside- Do you really think we can discipline autism out of children? aren't most of the progressions discussed here fairly predicatble with increasing maturity, eg a growing awareness of others, an understanding of societal rules and expectations, mimicing of behaviour- monkey-see-monkey-do, etc etc..?
YinLi has an interesting experience to share for sure, I'm fascinated in the same way I always am to hear of how people live in different countries/cultures. Thats it though. x

StarlightMcKenzie · 04/09/2011 20:40

Rural China seems to have some stricter requirements that can be helpful for children with ASD. Most of us would probably agree with them and wish that our society/culture could implement them into our school system.

A 'one ask' requirement for example is something that would help a lot of children on the spectrum. You are asked ONCE and you do it, not twice, not repeatedly, otherwise how does the child know which time they REALLY are required to respond to. It is certainly unsafe if that 'ask' is 'stop'. This system worked fantastically in ds' nursery btw.

Our culture is not understanding of children with SN I have found, just excusing of them, lowered expectations etc etc. If ds doesn't learn something then it is his ASD and he isn't capable apparently. In Rural China they would never give up making the child learn it. I say MAKE because that, in reality is probably how it is done and I think there is a very interesting argument about whether this is in the best interests for the child in the short term, long term or even at all.

Rural China probably has lots of things that we would find unacceptable here.

But the above is NOT ABA. I just want to make that quite clear.

Jodianna · 04/09/2011 20:52

Silverfrog, glad it's working for you and dd1. It's not what I would choose for mine, but each to their own. I guess it's brought up a lot because there are a fair few who use it on a reward and punishment scheme.

AlysWho · 04/09/2011 21:04

I'm sad to hear your experience of the SN world Star. Its certainly not ours, DD has relatively low abilities, but no-one has ever stopped trying to help her learn things. The opposite in fact, its made us all the more interested in finding an approach that works! And I say WE, everyone that I've ever witnessed working with her. Today we've been skiing, very proud moment for me to see her come down the slope after 2 hours introduction only!

silverfrog · 04/09/2011 22:28

JOdianna, once again: punishment is not an integral part of ABA. reward and reinforcement is, yes. punishment is not.

this does not, of course, mean that there is no one doing ABA who also uses punishment. but they are not using punishment because ABA tells them to - they are doing so becasue that is their preferred parenting style.

silverfrog · 04/09/2011 22:28

oh, and sorry if the mention of ABA is boring you, Alys.

nightcat · 04/09/2011 22:29

YinLi, really enjoyed reading about your experience, would love to hear more about diet when you have a moment..

StarlightMcKenzie · 04/09/2011 22:37

I don't know if ability makes a difference, AL. Perhaps so.

DS may be able to live independently, work and have a relationship. The 'may' is wholly influenced by the provision he gets now and the expectations of those around him now. But people don't want to put in the effort or resource because he isn't bothering anyone and can survive albeit not learn anything. He is in the high risk 15% group of those who have attempted or succeeded suicide by the age of 25, and I have no doubt why that might be.

StarlightMcKenzie · 04/09/2011 22:40

And Jod, there is no punishment in ABA, except perhaps of the tutor who will realise that if the child is not learning or doing things how they are supposed to then it is the tutors fault and they have to make it more fun and work harder at engaging the child on the child's terms.

coff33pot · 04/09/2011 22:40

Amazed at what I have read here over the last couple days.

Diet....I would seriously be interested in.

Punishment for being autistic or showing a trait of autism in a non accepting society......by starving without food (re tiger book), and I am also reading between the lines on the types of other punishment and wont put it in print...........barbaric.

Sorry I probably sound harsh but thats is my thought and I cant say its acceptable wether its in another country or not. Its upsetting and unsettling to me and makes me go cold.

I would like to see my son "cured" who wouldnt and it would be wonderful should someday that happen and science has a breakthrough. But for now it wont be. I am willing to try a lot of things but what I am aiming for is to put the autism to sleep inside him as best I can. But I wont punish.

zzzzz · 05/09/2011 09:47

This reply has been deleted

Message withdrawn at poster's request.

cornsylk · 05/09/2011 10:14

what an interesting thread
very much agree with this comment by starlight 'Our culture is not understanding of children with SN I have found, just excusing of them, lowered expectations etc etc.'

Original poster

YinLi · 05/09/2011 16:57

Hi everybody and sorry I'm not here more but we were away for the weekend and now school is beginning so hectic...
In case I don't get here much in the next few weeks, again thank you to everyone who replied to my original questions and for everybody's kindness. Now I'll try to quickly answer questions - sorry, I don't remember who asked what and I have just a few minutes now... aplogies.
diet: lots of rice, no milk or cheese, lots of weird vegetables, very little meat, some fish, some insects :)
Sorry, I cannot arrange you and dc living where we did. Yes, I have read Battle Hymn of the Tiger Mother, great book imho. Why we let the host discipline our child: because it worked from the first day. Sorry have to run, thank you again to everyone....

OP posts:

nightcat · 05/09/2011 21:18

Thank you YinLi for coming back :) your diet is +/- consistent with what I have been doing (well, except insects ), I also like other cultures that rely on basic family based communities/interactions and I think fragmented/lost family connections can't be replaced by facebook.

I grew up in more family oriented environment and feel my ds is missing out on being more isolated than I was. Hoping to read the book as sounds interesting. Just curious, will you be maintaining the diet here?

Good luck with removing dx, whichver way you decide to go about it.

oodlesofdoodles · 06/09/2011 20:43

Very interesting post YinLi. The close extended family aspect of your experience sounds very interesting. Having the other kids and the adults model appropriate social behaviour must have been very helpful for a bright ASD kid. I feel very frustrated by our frantic/fractured urban social life. Too much choice. DH and I have considered (not very seriously) moving to a hebridean island where a slower pace and more limited social life might help ds.

2.5 is quite young to get a dx in this country. You must have been well on the case. Sorry I can't help you decide whether to erase the dx. We are on the brink of dx and wondering whether we want it on ds's files or not. I've heard from a friend of a friend that it can be hard to get rid of one once it's there.

Not sure whether you've found a publisher or whether I and other mnetters are just wishing you would. Do put it all in a book - I would love to read it.

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