To DX or not to DX? (warning long)

[allytjd]

The ED-pysch is pushing us a bit (in a nice way) to get DS2(8) formally diagnosed (with AS) we have always resisted, not because we are in denial but becuase we don't think it would make much diff day to day and we don't know what consequences having it in official records could have in the future. Her main argument is that it would make it easier fro his teachers to understand him in high school, to me that means they would read ASpergers on his file and make assumptions about him rather than treating him as an individual. He is a bright, happy, increasingly sociable boy with no major eating, sleeping or behavioural problems, not rigid or inflexible in any significant way, he just has a few repetitive movement stims (that he mostly does at home) and a problem with concentration at school, even his sensory problems have diminished a lot. I'm not naive, I know this could all change later with puberty etc.
If I'm really honest I'm worried that being officially stamped with AS will hinder his love-life and friendships, although i would obviously encourage honesty in any seriuos relationship (he is a very honest boy anyway). I just don't want anyone pre-judging him.

Personally I would go for a dx. If your ds has As then he has it! They don't dx mildly and in my honest opinion I think it does make life easier for you as a parent and everyone else working with your child. Even though your child doesn't present with major issues there may be underlying things going on and it's always best to try and get as much help as possible. The EP honestly wouldn't suggest it if he didn't feel it was appropriate. Does his current school have any idea?

Go for the diagnoses without question

Ds has an official dx of aspergers. It opens doors, Disability Living Allowance for a start. His school are being hopeless at dealing with his needs - without a diagnoses they would be even worse imo.

Also he may well change
Ds didnt have eating problems a year ago - he has now

Ds wasnt excessively oppositional (a word I learnt from Knat on MN today!) He is now!

Sleeping issues also change - we have a perscription for melatonin because we have the dx

I cant see any reason why not to - many familes struggle for a dx you are being offered one on a plate!!!

Also ds feels happy about the dx - it helps him understand the issues he has

HTH

I see a diagnosis as a signpost to getting more help and in your circs I would go all out to obtain an "official" dx.

What the EP has said to you is something that not many would actually say out loud, let alone openly to the parents in question.

A formal dx will open more doors in terms of any additional assistance he may require with his educational needs. Some children with AS and on the autistic spectrum do find school and its whole social environment extremely challenging.

If he was to require a Statement a DX will give you as the parents more clout with the LEA as well. Infact if you have not already requested a Statement I would urge you to do so particularly before he gets into secondary school.

Well, I'm not a very good statistical sample, but here I am, ASD, and married for more than 20 years to a wonderful man. Any problems he has with relationships will relate to a partner not having a clue why we can't just behave differently. If there's no official 'label', then they are going to see the 'selfishness' we can seem to display as being just that, and they will be hopping mad or very distressed about it. Best thing ever for us in our relationship is realising we're ASD through the Dx. What a difference it made to us understanding each other.
Same with other people with an ASD who have nly recently been dxd - they are so relieved that there's been a logical reason why they can't handle long unexpected visits from Auntie Marjory or big parties in the house or rock concerts or choosing the right birthday present for the person (or remembering the right thing to say etc).

It's taken huge, huge pressure off me. And them.

It's not good statistics, but it's a few clues.

A long-term partner is someone who loves them for who they are, dx or no dx. But a dx helps explain who they are, and that's important, I feel.

I would also go for a dx as it would mean getting any help your DS2 may need help with in the future.

Atilathemeerkat - Im interested in what you say about the importance of getting a statement in the primary stage. We are considering a parental request for a state.ment for our ds now (in year 2), or ducjing out of the whole school thing and Home Educating him instead................

Decisions decisions

This afternoon we are taking him to see his pead to get a referral to CAMHS entirely because of the stress his current school have caused him

You've been resisting for 8 years so you are clearly not happy with the label. It sounds to me as if you query whether the downside (prejudiced reactions) would outweigh the benefits (none discernable at present though potentially some in the future). I would have thought only a change in his behaviour would change your minds now.

I wouldn't in your circumstances - but my son is only 3!

Allytjd...your description of your boy sounds a lot lot my ds .He too is happy,bright with no major eating or sleeping or behavioural probs (slightly too quiet and withdrawn if anything).Sensory problems...not sure about diminishing ...more that he can cope with them tbh (they are still there). He has become slightly more rigid in the last year or so though..but i'm thinking it could be teenage angst kicking in too (he's nearly 12)

We got the formal dx at the end of year 6.

Ds does not have a statement...he is the first child through his secondary school with funding who doesn't have one. He has funding for 15 hours a week (or equivalent). The funding was initially for the transition from primary to secondary school and the initial settling in (6 months worth)...but we have just applied for it to be maintained and have been successful. Ds's concentration and organisation are the main probs at school. He is in top sets Maths Science and English.In science his funding is used to give him challenge work (he is a science whizz). In Drama and P.E it is used to help him cope with some of the social aspects. He has a T.A who sees him every morning at form time and checks his planner and kind of sets him up for the day.The dx and funding have absolutly changed our lives for the better.It was so reassuring to read his review notes and realise that most of his teachers have a good grasp not only of his difficulties but also of his capabilities. They have training to get the best out of him. The dx and the funding means my boy gets access to this.

The dx has also opened doors for me...courses,groups and suchlike.

I can't tell you what a relief it has been.

Don't get me wrong...i know where you are coming from completely. You are worried about the label aren't you?.
All a dx means is that your boy will get the correct label ...rather than ones which people give out of ignorance. Attila is right ...it is a signpost ...a 'headsup'...especially important given the numbers of teachers who will have to deal with him ...they have so much of a shorter time to get a 'hook' on him.

I say do it

I think the question you have to ask yourself is 'can he cope without diagnosis'.

You worry that if he is stamped with a diagnosis he will be pre-judged. That is a valid concern.

The other side of the coin is that if he is not diagnosed he will be judged against the same yardstick as everybody else. If he fails to live up to that, he will be judged. Nobody will know that they need to make allowances.

That means his teachers will expect him to behave like the other children and will punish him if he can't.

So it's up to you to decide what you think he can cope with.

Just a word of warning- getting a statement can take a long time.

Thanks for your replies everyone, it didn't help listening to a program on Radio 4 about the medicalisation of 'normal' straight after the meeting.
We seem to be lucky where we live, we have never had problems accessing anything DS2 needs, never had any conflict with the school or long waits for SLT.
I have discussed Asperger's with the kids and read them the Kenneth hall book, the whole extended family is accepting and understanding. DS2 is very philosophical about the whole thing.
I jsut get the feeling that DS2 is in the 'system' and the people that work in the system, however nice, like to have things nicely tied up and boxes ticked etc. I am vaguely irritating them by leaving loose ends. I know several other kids very like DS2 who avoided being entered into the system despite being just as quirky IMO, because they kept a low profile in infants. I actually feel that if I had kept DS2 back a year (he is one of the youngest in the class) he would have got off to a much better start but I ignored my niggles about that one.
I feel we have enough information to help DS2 (lots from Mumsnet and many books) with just an unofficial DX.
Amber, DH and I are both a bit Aspie ourselves and have been together for 25 years, and yes reading up about AS because of DS2 has helped us understand ourselves and each other so that is a good thing that has come out of all this.
With DH there is definitely a political edge to his feelings, he strongly feels that DS is wonderful and just a slight variation of normal and therefore shouldn't be labeled.
DS2 is the easiest of my three boys to look after so I would feel weird about claiming DLA too.
I am a bit stubborn though .

I suppose I am more cautious than you, because I have seen how easily all help can go out the window if one official person turns negative and you are not in a position to force them.

In dd's case it was a negative headteacher, but it really managed to mess up her life. Ds is just waiting diagnosis (for the same physical disability) and at the same time his school is appointing a new headteacher: I am nervous about this, in case they get another dragon.

I'm not claiming DLA, just want a diagnosis so I can mention the Disability Discrimination Act if I ever have to.

I think there are pros and cons. My brother had not diagnosis at school as HFA was unheard of in those days. The school knew he was 'odd' and made some allowances but I don't think he would have wanted either a dx or too many experts intruding into this life - but that is just one anecdote and he was both high functioning and very withdrawn/passive.

his life

I strongly identify with what you say. Also agree about DLA.

Clearly, you have to factor in your DH's feelings (which frankly I identify with too). How does he feel about the alternative political view that ASD is a difference and not necessarily a disability? Some people embrace the idea that as many as 0.5% of the population may "have" ASD whilst rejecting the deficit-focussed medical model of ASD.

Perhaps your priority is to figure out how to get/keep teachers aware of what the underlying sensory/perceptual issues are? The ASD label in itself contains no useful details about these whereas "face blindness" or "tactile defensive" convey more precise information that teachers could note and act on. Could your son learn to express these in writing in due course?

I suspect what we may do is let DS2 take part in the decision himself when he is mature enough (unless there is a situation that makes it more urgent). Waiting lists aren't too bad here. We have been lucky with school staff, the old dragons retired early on and have been replaced with the kind of staff you feel you might be friends with in RL IYSWIM .
A planA and planB are in place for high school. I will definitely push for a co-ordinated support plan.
I forgot to tell you that the initial reason for not pushing for a DX was that it would have restricted school choice for us (as the legislation stood in scotland at the time, this has recently changed) as it affected out of area placements.
Phew, its all so complicated, but reading your opinions will help me decide eventually!

Lingle, I feel that i am becoming quite effective at being an advocate for DS2, and am working on teaching him to be an advocate for himself, he recently asked to go to drama classes so i have signed him up for some Aspie friendly ones which may help with this. I am quite upfront about explaining DS2 to people these days.

fantastic - that must be so empowering for you both - which is what we are all talking about really, isn't it, whatever angle we come from and whatever our views on diagnosis.

I find it easy to be upfront about receptive language delay - you cross a border where you don't care what people think any more....