Would you ever consider having a dx removed?

[claw4]

My ds received a dx of general ASD when he was 5 and half, he is now 8.

He is high functioning (compared to most), has a high IQ, his reading, writing etc levels are above average and he scores in the above average of most assessments/tests. Although this does not describe his functional ability. Ive been told that upon meeting him, you would probably think he was just a bit 'quirky', a bit of 'geek' maybe.

When i agreed to the ASD dx, i was thinking a 'label' is only as good as the help he will receive.

He currently receives a social skill group and a sensory skill group run by a TA in school and thats it, as good as useless.

I have spent thousands, on private assessments for SA's and Tribunals and although they have identified many of the difficulties associated with ASD and stated what help he should receive, this is ignored because of his high scoring centiles and above average levels, therefore his difficulties are not getting in the way of 'effective learning'.

So ive been questioning whats the point of the dx? Is it something you would consider removing, given my circumstances?

I guess the thing is Claw if you want him to go to a unit in MS for secondary you'll only be able to do that with a dx.

Thanks Ben10, i thought to go to unit in secondary he would need a statement, not a dx?

The dx couldn't hurt the need for a statement! At the end if the day you want the best for your dc. Use whatever is in your arsenal.

Could you access an ASD unit without a dx? Here you can't. Obviously you need a statement too........

Sally, I have already been to Tribunal for a statement and lost and i dont hold out much hope of getting one. Although ds has significant needs, their opinion is ds is managing to score above average in his national levels and in assessments, so in their opinion his needs are not getting in the way of effective learning. I did argue that he was not making progress with his social skills, sensory skills, motor skills, emotional wellbeing etc and had experts to back up my opinion. But it seems if these needs were getting in the way of his learning, he would not be scoring 'above average' academically!

Ben10, yes sorry to access an ASD unit, he would need a dx. All the while he is scoring 'above average', he will never have access to a unit anyway, unless he starts being disruptive, something else i cant see ds becoming. He wouldnt say boo to a goose.

Why would you remove the dx Claw? Do you feel that it is being harmful to him in the way that he is being treated at school?

Here we have units that are for HFA and Aspergers so would be ideal for my DS I think.

Also seems around here, we have special secondary schools or mainstream, there are no mainstreams with units attached. I would therefore have to go further afield and to do this i would need a statement!

Ben, no i dont think his dx has been harmful in the way that others have treated him, just seems pointless having a label if he is never going to get any help.

I wouldnt remove the dx if it was me. When your ds goes to secondary his needs might change. There are many people on here whos dc's really struggle at secondary. Without the dx you will find even rubbish support is imposible to access.

My Dd3 is working at above average levels but socially every day at school is a stuggle and at secondary this will either continue or get worse.

Ineedalife, im finding even rubbish support impossible to access now even with a dx and the backing of expert recommendations!

Maybe im just feeling a bit helpless and down, now ive started to look into secondary schools.

I would sit tight and see what happens. You don't need to disclose the dx if you don't want to but also i don't see the point of going through more assessments to get it removed.
A dx does help in terms of DLA etc etc and may help him significantly if he ever needs to apply for benefits and support as an adult.
I often read on here than teenage years can lead to increased anxiety etc and poss mental health issues, then there is the risk of bullying at secondary.
You have a few years yet until secondary I wouldn't make any decisions yet, this may be a time when wait and see is worth it.
There may be social groups and activities run by social services etc which might help with social skills. Or a charity.
My friends son had no support at primary - partly her choice and achieved academically. In his second year at secondary he developed quite severe anxiety about death. She was able to get school to be very supportive and understanding and get him referred to CAMHS. He is a lot better now but you never know whats round the corner. The dx meant she was taken seriously.

Hi Agnes, you are right and so is everyone else on this thread, removing it probably isnt the answer.

I suppose im thinking, if ds's difficulties are not enough to get him the help in school that he needs, then let them assess him to remove the dx as his difficulties then shouldnt be enough for a dx.

Ds already suffers with high anxiety, has been assessed by CAMHS and they supported my application for a statement, they even stated social skills and school were causing his anxieties and without the appropriate help, his behaviour would esclate. Seems all schools/LA/tribunals are interested in is centiles and levels and despite him needing 1:1 therapy at CAMHS for a year and half to help him cope with his anxieties, as long as he is anxious but achieving, its not a problem.

Seems ds will only ever get the help, if he becomes disruptive or academically falls far behind. I cant see him ever being disruptive, he direct it inwards, not outwards. I can see him underachieving, not sure whether he would far enough behind though.

Its quite depressing, trying to think ahead.

I am waiting for a appointment with paed for DS1 to have his dx changed or removed. He was dx at 3 with low functioning austism (non verbal). I ceased his statement and DLA at 9 as his main obsession is to be like everyone else and he has improved so much. I waited for him to be halfway through secondary before the possiblity of removing dx. He still has autism but he copes so well (I put this down to him having hypo sensitivity and not hyper). I would not of done this any sooner and I do worry about college/univerisity but I have to respect his wishes as well. it is still a minefield but will no more after appointment.

Claw I would consider it, but not for the reasons you give.

I think you are thinking of it as you feel compelled into action of some sort, but this action is not really going to change anything and I think getting a dx is harder than removing one, plus you'll look like an idiot if you change your mind and ask for it back.

Given his age it is something I would consider doing much later with his involvement and views.

Don't do anything like this without having a goal or a reason that you are certain he will benefit from. For example, I would consider getting it removed if it was hindering his access to a SALT base for example, if I felt that at SALT base was the most appropriate placement and the ASD dx was getting in way of him accessing it.

Thanks Squid, just all seems so pointless if he isnt going to get any help, but as you and Star point out, maybe im jumping the gun.

Star, ds doesnt know that he has autism, i havent told him as i think it will upset him, i dont think anything would fall into place for him or he will have a realisation of 'oh thats why i feel different'.

Although i have just had a sudden realisation after reading Squid's and your comments, this isnt my dx, its his and my first step should be telling him that he even has a dx, maybe not today or right now, but most def before i consider removing anything. I am so used to just doing what i think is best for him, im forgetting this is not just something that should be done to him.

Thanks for that, its hard to see the wood for the trees sometimes.

Your DS is eight and whilst quirky now, it is possible that his difference will be a lot more obvious as a teen or adult. You might find that he needs to be able to understand why he is different then. If he doesn't then it won't make any difference having it there.

Once out of school, disclosure is a choice (eg FE, HE, work). He might need it then, he might not. But I would think it is a lot harder getting it back than leaving it dormant on his NHS record.

Oh Claw, ds is now just gone 12 and wasnt dx until just over a year ago with AS/ASD (high-functioning). I cant even describe how much more noticable his autism is becoming as he gets older.If I compare him now to when he was 8 it would be like comparing two different children. His anxiety etc is getting worse also. As for telling him, I think its important that he (your ds) knows about his condition and the younger the better really. Ds found it hard to accept as we had not mentioned it to him , but he is now coming to terms with it and we minimise it as best we can as in " some people have asthma, some need to wear glasses to see, you just think a little differently to others etc". As creamteas said you may find he will need to understand more as he gets older and realises he is a little 'different'. I would leave the dx as it is for the time being-you can review it again in a few years.[busmile]

Leave it to go dormant but don't remove.

My ex is his 40's and hadn't felt the need to disclose at all other than in relation to trying to get our DS help for a good 20 years (so no employers etc) until he needed a 4 day stay in hospital a few years ago after getting mugged. In his concussed state, he couldn't handle some aspects of his nursing care so got me to tell his doctor.

It made a massive difference to how he was treated (the nursing staff had been mean to him as they thought he was being rude - he just wasn't feeling well enough to remember all the social skills "rules" in his 2nd language!). He had a much more comfortable stay as a result as they were considerate of his sensory issues, gave him time to process questions and didn't take his seemingly abrupt manner personally after they knew.

I suppose I'm trying to say you just don't know the future or when it might be handy. We won't always be in a position to protect our kids and we can have NO idea what scrapes they'll get themselves into in future - possibly on the other side of the world

Claw. I have been thinking about you. Over Easter. Not that I have anything, remotely helpful to add. And you are probably full to the brim of sympathy, so I won't offer any more of that, either !!
But just to let you know that I was thinking about you. You made my heart, really sad. We are in, not dis-similar circumastances. Only that your road has been much longer, more fraught and ten times worse than mine.
But I have come to the conclusion that, sadly, there is little help available for my son. And I am sorry to see you in that positon aswell.
Sure is a sorry state of affairs, isn't it?