I'd like some views on the pros and cons of getting a formal diagnosis of Aspergers.

[earthtomummy]

for DS. He is 5 and we are certain - as is inclusion Support - that he has mild Aspergers with dyspraxic traits. We are part way through the process of getting a diagnosis, which we thought might help get him support at school. This has been a struggle as some of his needs are quite subtle and school doesn't seem able to acknowledge them. However, DH proposed that we don't seek a diagnosis. He thinks the school's attitude won't alter and it won't mean anything to the teachers anyway and that a label would be very fixing and negative for him. I hope it would enable us to push things at school. By the way DH works in schools in a CAMHS capacity and this is his experience. Is there any MN with Aspergers themselves with a view on whether or not the label was helpful or not. Or anyone with a child with Aspergerds who has a diagnosis and found it helpful or regretted it? I'd be really grateful for your views.Thanks.

In general it is easier for a child to get higher levels of support in school (if needed) if there is a formal diagnosis. At least this is the case in the secondary school where I work.

in some cases it can make it easier to get outside intervention in the move from school action, to school action plus.

I think if your child has Aspergers then it is worth getting a full dx.
My dd certainly has traits of it but as of yet doesn't have a dx. Although dd has a language disorder as well and gets lots of support in and out of school.
If it's there it's there and it can only help your child.
If your child doesn't receive this dx then things can and do change as children get older. Aspergers generally becomes more apparent as they develop and without any dx I doubt your child will get the help he needs.
Remember it is only a label, which infact is a signpost of your ds's needs. If anything doors will open.
Good Luck

my son is 7 and sounds similar to yours. he has been on school action plus for over a year, and we are only going through the statement process because i applied for it.

the school sn teacher suggested aspergers but the rest of the teachers involved with him (who all freely admit they have never taught a child with aspergers and have no idea what it is) are adamant that is not the problem. i have asked for some really basic things to help him and they just wont do them (stuff like changing wording, letting him know in advance if a supply teacher is coming in, moving his desk so he is away from the other kids).

i am applying for a diagnosis but tbh i dont care if he gets one or not because i am moving him to a school who have more idea what they are doing and are willing to implement the strategies without the diagnosis. i want a school who is happy to help, not one who is forced into it by a statement.

i talked to my hv and she told me her son has AS, she ummed and ahhed about moving school and it was the best thing she ever did. im not saying it is guaranteed to work, but my son is now being frequently excluded beacause school cant (wont) cope with him. i hope things dont go that far for your son, but if school are not cooperating i would urge you to take it very seriously and consider all your options before he is in the situation my son is in

When ds1 was dx'ed with HFA the Paed also told dh that he (dh) almost certainly has AS too. Dh found this to be an incredible relief. He finally had an explanation for why he has always felt different to other people and why he has been unable to 'get' all the rituals and rules that go with the social side of things. Since then he's been on a mission to raise awareness of AS/ASD especially in the workplace.

Ds2 (3yrs) was first assessed at the age of 2yrs. The Paed felt that ds2 had all the traits of AS but wanted to leave it for a year before making an official dx. During that time he was given all the help that he would have received if he'd had an official dx. This was great but the problem was that without the dx there would have been no guarantee that the help would continue when he left pre-school. The Paed officially dx'ed ds2 with AS when ds2 was 3yrs old. It has actually been a relief to finally have it in writing. It will hopefully make his transition to school next year a lot easier too.

As someone on here said a long time ago, a dx is more like a signpost than a label.

I think a dx is definitely worth having. Partly to protect your DS's rights and recognise that he does have AS. Whether it affects what the school does or not and whether you access more services or not, I feel that it can only do good in the long run. I know a few kids with AS and/or HFA and they seem to feel it helps them a lot to have some explanation, however simple, of being different to other people. As someone gets older I'm certain it make a difference to them, to how they feel, to how they cope. There is a high incidence of mental health problems in older people with AS and no support or AS and no dx (sorry to sound alarming!). My older sister who has AS would have had a much happier and relaxed life if it had been understood and me and my other sister would not have disliked her so much or so often when we were growing up. We basically have almost no relationship with her now as she just carries on the same, knowing she has AS but not getting a dx or doing anything about it and certainly not trying to understand herself and why things always go wrong for her. I think it would be a big mistake not to get a dx now or at least during your DS's childhood. Once he's an adult it may be too late to make a difference. Its interesting to read CT's DH's experiences and how its made him feel. It doesn't sound like he feels that he's "worse" or "inferior" to other people at all, but "different".

yes and yes.

I was dx,d last year and i wish that it had been sooner, i recieve help (counselling etc) and DS has been dx,d recently and now the LEA are having to take notice, i dont agree with the "its just a label" brigade because speaking as a person with AS and the mother of AS its very important that we are recognised and unfortunaltey the only way to get help at this present time we have found is with a dx.

HTH

I'm on a strange side in this. I have an As kid for whom I struggling to get a DX (more general hold ups than anything else), and I know it would help because there are places and services we cannot yet access. However, I also have - I am certain- AS. I have decided not to follow the dx route. It would have helped me a lot to ahve a dx as a teenager, I struggled to hold down a job and with friendships. I had bad self esteem as a result, and eating disorders. Understanding why I was different would ahve been so valuable. However, now I have learned to eal with tings, and what my strengths are, I don't think there is massive va;ue- I know myself well enough to know I don't need to go abck to the old days, it owuld do more harm than good.

However, with a ittle one- if you can help him avoid all the teenage crap I ahd to get through to get to this point in my life- yes, go for it and good luck.

• HAD eating disorders!

Thankyou so much for your thoughts. It is really helpful to hear what other people think. To be honest, I would like to get a dx for DS because I see it only as being useful. DH is just woried that it will follow him and label him unhelpfully. I think that it would help DS and our 2 others if we had a dx and a clear understanding of his needs and also our families. i also think it would help him as he grows up to understand why some things are so difficult. I've struggled a bit with this all, but now I'm getting to the point where I need some confirmation - not sure why. Maybe it is because school - or at least the head - is saying that there is nothing wrong , - except that he might be 'mildly autistic but we all are' and he doesn't need to have an IEP.. I just don't understand their problem with acknowledging his needs. He's on action plus. I never envisaged such a battle. And this is a good school. Disheartening isn't it.

This is an excellent book about (and by) a teenage boy with AS that wasn't told until he was 11 or so (I forget). It's a good read for families of kids with AS, and an even better AS kids who are teens. I recommend it to all.

\link{http://www.amazon.co.uk/exec/obidos/ASIN/1843100983/qid=1150735573/sr=8-1/ref=sr_8_xs_ap_i1_xgl/202-8177620-7370222\Freeks, Geeks and Asperger's Syndrome}

Do be careful what you tell your LOl though:

quote- DS1 on camping trip at whitsun to complete stranger:

'I have aspergers. It means I can't eat cheese'

DOH!

(He also has been known to clobber poeple and say 'I can't help it , I have AS)

LOL at ds PeachyClair (sounds like when i told my ds that he was more mature than his dad and he told the childminder "mum says i'm more intelligent than my dad" - he is in both cases by the way).

I agree that a statement is more of a signpost than a label - it certainly has helped my ds and myself in understanding him as a person. The school still have certain issues around it but they are way better than his old one. I moved him from there as they didn't understand SNs and no desire to learn, so he was just branded as naughty and kept on school action plus.

From reading some of the other posts on here, you will see how upsetting it can be to initially receive a dx, but i for one felt a dx really helped. It's interesting that your dh works in a CAMHS capacity though, a different angle.

jenk - what I meant by that it is a label that describes a child/person's difficulties. I hope you don't think I was belittling the dx at all :).
As a mum of a child with complex/hard to dx special needs I have tried not to get too hung up on a label and concentrate more on dd's needs.
I do believe that a label does sign post particular needs and was trying to reassure earthtomummy of that.
Getting a dx can be very daunting and when a professional told me about the sign post and doors opening I did find it very reassuring.

Sorry guys, just checked this thread and saw new messages and have just posted on Essbee's re. diagnoses. DH and I had a really long chat last night and we have v. differing views on diagnosis. I wonder if I'm being selfish - I want a diagnosis because I think it will help school understand him and to facilitiate his learning and handle him sensitively - also may need OT/physio input. For myself I need an end to these months of what is the problem, is it Aspergers, is it this or that. DH holds the view that why should it make any difference with a dev. paed. telling us it's Aspergers and that that is pretty much what she will say. Also that we can influence her diagnosis by what we say and how we present it, so it's not truly independent and objective. DH thinks DS is too young to be labelled. I feel so tearful and drained and upset because I just - inexplicably and poss. selfishly - need independent confirmation of my suspicions - which I can't spell today it seems! I somehow feel that then I can just get on with life again. I have had a hard week with DS being q. aggressive with our 3 yo DD and v. hypersensitive to others and to clothing. I just want DH's support and he said he'd go for a diagnosis if I really needed it, but how can I when I know how opposed he is to labelling DS at this pt.

Sorry, also meant to ask, when did you share diagnoses of Aspergers with your children? Peachyclair, you did make me laugh - 1st smile today!

I was in denial for a long time that there was something not right with my son although my dh knew all along and when I look back I realise so did I but I felt that if I acknowledged(sp) it, it would be definate and with a dx it would no longer be something I could think of as a phase.

Everyday I feel guilt that i did'nt do something sooner. My son is 3.4 yrs old with autism DX'd and has the language and understanding of a 6-9 mth old and I feel great sadness to think if only I had snapped out of the denial sooner and got all the help and stratagies now in place maybe now he would be further along, even if only alittle I would not think 'if only' everytime i see a child of his age and see the incredible difference.

I know it is not my fault he is autistic but if i had'nt left it to get help until he was 2.5 things could be different now, maybe they would'nt but i will NEVER know and that is what hurts the most.

I love my son with every ounce of me and the DX made no difference to that whatsoever i just wish i had'nt kept saying 'it will come' and 'everything will be ok'.

get the DX because otherwise this could be you in the future, always wondering if only you had done something sooner.

HTH

also I think that even though you dh knows and accepts your sons needs, seeing it in black and white and having it confirmed by a professional make it so much more real and maybe this is what he is affraid of