Is it always better to 'label' Aspergers?

[NomDePC]

I have wondered for a long time whether DS1, who's just turned 4, has Aspergers. From the reading I've done online, he displays pretty much all of the main traits (hypersensitivity, social awkwardness/inappropriateness, advanced literacy/numeracy for his age, obsessive behaviour). The main reasons I have held back from investigating are that 1) these traits seem to me to be at the milder end of the scale, and 2) they have generally got significantly better as he's got older. So that now, although he's an unusual little boy, with some problems managing social situations, he generally copes pretty well (going to pre-school at age 3 helped him immeasurably).

Last night, however, I came across an article on the net here (in case you're interested) which frankly could have been written by someone who sat down specifically to describe DS, and I'm now wondering again whether perhaps he is on the spectrum. The other reason I've held off doing anything before is that I was wary of 'labelling' DS when his difficulties are relatively mild. However, this article emphasises how helpful it is to get therapy during the 'crucial' 4-7 years. I'm also thinking ahead to when DS starts school next September; obviously I want to make the transition as easy for him as possible.

So - what I want to know is whether other parents think that an official diagnosis is always helpful? Or can the 'label' be unhelpful in making other children and adults view Aspergers children differently, if they are otherwise coping reasonably well?

I would be very grateful for any advice. Thanks.

"But I guess that might not always remain the same, once he's in a more challenging environment at school (though luckily he will be going to an 'outstanding', very small village school, where he will already know most of the children in his year)".

Exactly and this is why I suggested you apply for a statement. I would go all out now to get extra support put in place for him. I would establish a relationship with this school now and ask them exactly how they are going to help your son with his additional support needs. Presumably this school has a SENCO on site?.

Atilla - there is no indication at all that he needs a statement.

Most children with ASD do not need, or qualify for, a statement.

I never asked for a label the label came with the needs both my boys had. I knew both were on the spectrum and in my case both were dx early but this was due to very evident needs. It can be very difficult to get a dx esp if others do not see what you see. I never worried about the label as it was more important to get help that my boys need and needed. My eldest would rather not have a label but I honestly believe he would not be where he is without it, he is now a teenager.
I suppose it is gut instinct ( with regard aspergers/hfa) not ever knowing if you made the right call. I would also keep a close eye on his mental health as that is my biggest worry for my son with HFA.

"Most children with ASD do not need, or qualify for, a statement".

Really?. Such an assumption is exactly why I have seen children fall apart when they hit school.

The only "criteria" for a statement should be need of one.

The only "criteria" for a statement should be need of one. - exactly.

Having ASD does not mean you need a statement.

ASD is a huge spectrum. Huge.

Some children with ASD will be fine with only minimal help at school. ie they don't require a statement.

Other kids with ASD cannot attend MS at all.

You can't make any generalisations about kids with ASD, because the spectrum is so wide.

stillhere sorry, I didn't mean to imply that Aspergers children are all 'naughty', or that I thought DS didn't have the condition because he's not 'naughty'; I just meant that I hadn't really thought about an assessment before because his behaviour is not generally problematic at the moment, so I hadn't thought of him as being in need of support. But I'm beginning to think that if I get an assessment now, then if he does need support at school, he can access it more quickly and easily.

As for the school, Attila, I don't know much about their SEN provision as yet, because I'd never thought of DS as potentially having SN. But I'm going to an Open day in a few weeks' time, so I can investigate further then.

Sorry, took about an hour to finish that last post because of making the kids' lunch! Indigo that's interesting about a wide spectrum, because it chimes with what I'd been feeling (about DS1 being at the very mild end). Although I'd suspected for a while that DS1 might have some form of HFA, I'd never really thought about a dx in terms of getting support, because I'd never thought in terms of him needing or qualifying for support (it had never even remotely occurred to me that he might not go to a mainstream school). As I've said, if I do get a dx now, it will be more a) to make the school aware that his social skills are not great and he might need a bit more understanding in that area, and b) to be in a position to access support quickly if he doesn't settle well at school.

Incidentally, I think one of the reasons I'm thinking about this more now is that my second son is now 1, and he is so spectacularly different from DS1 that it's reminded me/made me realise just how 'unusual' DS1 is (and has been since the day he was born).

I can't agree enough with Justabout. IF he needs support, and hopefully he won't ever, the ability to access it quickly without having to wait YEARS in some instances could make all the difference. A molehill will never become a mountain iykwim. Any issues can be quickly and easily resolved.

Understanding and kindness towards our children can make all the difference. He's only 4, will a little bit of extra tlc as he settles into school & a close eye kept just for the first few weeks as he settles into school do him any harm? Hopefully he never need more "support" than that.

Hi NomdePC

Certainly go along to the open day and if you can talk to other parents whose children are already at this school

Do ask school now about the resources they have to put in place re your son's additional support needs. Ask them exactly what they are going to do to help him; after all you are your child's best - and only - advocate here.

Re this comment made by Justabout:-

"IF he needs support, and hopefully he won't ever, the ability to access it quickly without having to wait YEARS in some instances could make all the difference".

Would agree with this comment; early intervention can make all the difference. I do go on about statements but this is also because I have seen too many good kids languish on plans like school action plus for too long where the support offered on it is very limited and that support can be withdrawn or curtailed. Your son may not need a statement now but it is something that could be considered subsequently. Apart from anything else, the overall attitude of the school is extremely important; do sound out his proposed school very carefully.

Clearly, opinion is divided on the usefulness of having a "label" and obviously you are the one who is best placed to decide what will help your DS. In my case, DS2 was diagnosed this year (aged 7), although we had known for years. He doesn't need any major support at school, although he has a bit of 1:1 for literacy. However, it is certainly helpful for his teachers to know that he sometimes sees things a bit differently - that he finds it very difficult to organise himself, that's why he's always the last to get changed for PE, that he takes things very literally, that he likes things explained in a visual way etc. I love this little book which really explains things clearly www.amazon.co.uk/Can-Tell-About-Asperger-Syndrome/dp/1843102064.

A label doesn't change anything about your DS, and if you DO get a diagnosis you don't have to tell everyone, but it might get you a bit of help if you need it.

Hello NomdePC

Hmm you're right I do seem to be at odds with everyone else here! I noticed that in this thread as well.

I probably shouldn't be contributing to this thread as DS is more HFA than AS - he doesn't have that streak of genius. He's an averagely intelligent person who also struggles with language and motor skills.

We're not in England so we don't have statements. I am applying for DLA though and have been urged to put a dx on the form.

I just hate the label Austism/autistic - it means literally 'selfish' and I don't think he is. In fact I know plenty of selfish people who are wildly sociable and articulate.

DS is now 4.5 and I've been pursuing a dx tooth and nail for about a year. As we've gone through the process I've become more and more disillusioned with statutory SN provision. He's been to see numerous experts who tell me how useless he is but don't have any practical advice on improving his situation.

I've also noticed that people make assumptions about your child, eg he doesn't want to socialise - actually he would love to socialise and gets upset that he makes such a mess of it. Or eg he has sensory issues that can't be challenged - actually he has behavioural issues that can be improved.

I'm still hoping that he can make progress and one day be too borderline to make a concrete dx. In the meantime I'm trying to smooth things for him by telling people about his specific problems and how to counter them.

Anyway the OPs on here are far more experienced than me - they're probably right.

our ds was diagnosed with Aspergers last week, he is 4 years old (nearly 5).
I could have written your post this time year ago - in fact i started a thread asking people whether they thought it sounded like AS..
we have been really suprised and pleased with the way we have been taken seriously from day one of going to the GP, the the Paediatrician etc..
and last when we were given the dx (which was a suprise to us, we thought he was maybe too young for that), it was REALLY clear that the Paed. and co all could see that early intervention at the beginning of ds's school career was going to make all the difference, and already I am SOOOOO glad that we sought help when we did. This is his first year at school and although he is mostly coping, some things are proving more of a challenge than we had anticipated (things like he can't remember how to find the toilets and so gets lost or wets himself which obviously really affects his day) but already the school staff are primed to give him the help and support he needs.
One week post dx we are feeling a bit overwhelmed by it all, and sad for our ds that life may be more of a challenge for him than for others, but we are very glad that at least we are giving him the best start by having sought help.
All the best to you.

Thank you all again so much for your help. You are unbelievably kind. fairylights I read your previous thread as well, and it's very interesting to see how you've travelled from there to here. You've also added another reason for me to think that DS might have ASD, which is the whole issue of control, which I hadn't realised was linked to Aspergers. DS can be extremely controlling (though, as with all his traits, he seems to be going through a more mellow phase at the moment); I vividly remember how, a year or two ago, he used to emphatically demand that DH and I sang along to certain nursery rhymes on the CD we had in the car - he had designated some of them as DH's songs, and some mine - and god help us if we tried to sing along to the wrong ones.... Anyway, I'm so glad you've found the dx helpful, fairylights, though like you I'm already feeling fearful for DS's future and hoping against hope that everything turns out ok for him (stillhere he's incredibly kind, like your DS - he's moved me to tears several times by how lovely he is to his little brother).

Incidentally, another question for all you lovely people (sorry!). You said to ask the prospective school about their SEN provision, but I'm not quite sure what I'm looking for (I'm sure most schools could talk a fairly good game to the uninitiated - ie me). In a nutshell, is there anything in particular I should be asking about or looking for in response??

I have just this evening had a brainwave and the word aspergers popped into my mind, so here I am googling away. He eats a very limited range of food (cereal, dry biscuits, toasted bread), he is obsessed with drawing specific drawings and he has very poor social skills, hitting is his way of saying hello, and apparently he doesn't chat/talk to other children. I think having started school has been very stressful for him too.

Thanks for that article OP, it was very interesting. For my DS, I want to get him help if possible because he has always had poor social skills and I try daily to teach him how to talk to other children with no results. What do I do? Will anyone be able to teach him to talk to/play with other children and not just hit?

Well, I just wanted to let you know that, after much soul searching, we have decided to pursue an assessment (largely on the back of this thread). My immediate next step is to speak to DS's lovely key worker at preschool to get her view. DH (who happens to be a secondary school teacher) is also going to have an off-the-record chat with their SENCO to see if he can find out anything about the support available in this area, and also any specifics about the school DS is likely to go to next year. Then I'll book an appt with the GP to get the ball rolling. It probably sounds crazy, but one of my worries now is how/when to discuss it with my family; the grandparents are all lovely and completely adore both my sons, but I suspect they're also in the 'this special needs stuff is all just a bollocks excuse for bad behaviour' camp (like many of their generation, I imagine), so it might not be an easy conversation to have.

Anyway, thank you all again SO MUCH for your help. I have a feeling I may be spending a fair bit of time on the SN message boards on MN in the weeks, months and years to come, so I will no doubt see many of you around .

BTW acrunchieandacupoftea I'm sorry to hear you're having difficulties with your son. I'm clearly not the person to answer your questions, but I'm sure MN can help you out! Maybe post a new thread if you don't get the answers you need here?

Tbh I have been trying to get a diagnoses for my ds for 4 years, I need a label for him so that I can help him in ways that may be beneficial to him before its too late (he's 9 btw) I have had all sorts of suggestions and aspergers, adhd and asd pop up a lot, along with dyspraxia and D.A.M.P. on occassions, also when he's older, like fourteen and people are wondering why my very tall teenager needs me to walk him to school everyday, or wonders why I'm having to try and calm him while he's having a tantrum in a park because he wants to play on a swing I can then say to them, he's got this dx and he has no sense of danger/doesn't need spectators. Even his school friends have asked why he does or says this, walks or runs like that, I'd like to tell them but I dont have a dx and ds isn't aware of it either.

Best to get a dx IMO, you dont know if his traits may get more severe.

Nom - just came back to this thread and just wanted to mention something about talking to the grandparents. My parents have been supportive from the start (my mum is an OT and i think had suspected something but not said anything!) but my in-laws initially were REALLY annoyed with us for "getting him checked out". They were terrified that he would be labelled (and labelled wrongly) and because they are close to him and adore him (and he adores them beyond anything in the world!) they really were turning a blind eye to all the things that we were questioning. They are also of the ilk that any kind of "problem" should be kept "in the family" (can't get my head around that one!!).
Anyway we kept very quiet about it through all the assessments with them making very pointed remarks when they were with us about how "FINE" he was and "NORMAL" - it really annoyed me but kept my counsel. Anyway, fast forward to getting the dx and although my MIL was initially devastated they have actually been GREAT since, I had an amazing conversation with my FIL who phoned to say that they just wanted us to know that they would do anything at all to support us and ds. He even broke down in tears, and this is a very stiff-upper-lip, old fashioned kind of guy. Somehow, having lots of professionals tell us that ds did have AS (rather than it just being us being deluded!) helped to shift their thinking. It has totally suprised us but been a great relief.
I hope that you have a similarly positive reaction in the long term, and all the best with the next steps..

Thank you so much for sharing that, fairylights - our families sound very alike. I'm of the opinion that it's kind of inevitable that the GPs will have to know (quite apart from anything else, we might need some logistical help in babysitting DS2 during the assessment programme, as I'm assuming we're likely to have some fairly lengthy appointments where a rampaging toddler wouldn't be terribly helpful, and it's very difficult for DH to get time off work). But DH is extremely reluctant to tell them. I think we may decide to keep it from them for as long as possible - ideally until we get a dx (or not), but otherwise at least until the process is underway. I agree on that front at least - I really can't be doing with the endless 'I really don't think this is a good idea' conversations that we'll have to put up with otherwise. I'm pretty sure that, in the end, the GPs' adoration of DS would trump all else - but it might not be pretty in the meantime.