Aspergers - is the label always an advantage?

[Egede]

My 5yr old ds is being assessed for ASD/ Aspergers (the specialist person who visits the school - not quite sure of his title - has offered a referral to the developmental paediatricians at the hospital). I'm ambivalent because ds, although largely without friends and not good in social situations, doesn't seem unhappy, is doing well academically and enjoying his interests (mostly in physics text-books and alternative technologies). My brother, and probably father, have ASD and it seems to me that this end of the spectrum is hard to distinguish from masculinity + a scientific mind, and I really don't want to pathologise ds at this age if he's just different but happy. Does anyone have experience of a diagnosis making a positive difference at this age/stage?

Thanks very much!

If your son is on the spectrum I think it's best to get the diagnosis whilst the supports can be put in place. He may be fine at this stage, but the gap between himself and other children his age will become more noticeable, particularly when secondary school approaches. It can often take a good while for the right help to be established, so you can think of it in terms of preparation.

Not sure.

There's never enough money or resources for a school to offer help that isn't needed, so my thought is that the diagnosis wouldn't lead to them doing things that didn't benefit him.

I'd think it was worth worrying just a little about his lack of social skills and friends, even if he seems happy. If it's his choice not to have any, then fair enough, but if he lacks the knowledge of how to interpret the social behaviour of others around him, then sadly it'll usually only be a matter of time before he finds the school bullies. 95% of us experience it during our lives, from what I read and from my own experiences. We're often SO bad at explaining when we're upset or scared or in pain, and often we can seem really content when all we're doing is blocking out the pain/distress and pretending other people aren't there because we are so scared of them.

A formal diagnosis would allow the school/LEA to put in the help he needs when he needs it (well, in theory...). If it's a good school/LEA, they will.

I think it can only be helpful for teaching staff to know the situation. For example, he may yet develop the odd seemingly-irrational 'behaviour thing' or he may just need that little bit extra patience/tolerance/encouragement in some classes (eg the ones he's not interested in) - an ignorant teacher might put it down to bad attitude and make life harder than necessary. Other kids will pick up on teachers' vibes and follow their example.

I'd always go for the diagnosis, to be honest.

Ideally, schools etc should provide support with or without a dx, depending on the child's presentation, but for so many of us that's not been the case in practice. If you have a dx you are much more able to stand your child's corner and give good reasons why certain support should be in place, whereas without it you can often be regarded as just another paranoid parent who refuses to recognise that she has a naughty child. The dx explains the behaviours and makes it more likely that schools will take notice.

I accept that your boy may be managing OK now but he's got the whole of his school career ahead of him and he is likely to find it difficult if his social development isn't in step with his peers. The earlier you get the dx the better, you have time to get your head around it and help your son to increase his self awareness about managing his condition, and the earlier you begin teaching him this the more likely he is to learn.

IMO you have nothing to lose by having the dx.

Have to agree with other, getting a Dx for my DD has been a positive thing, its ment that we are able to understand her way of seeing thing much more clearly.

Thank you for all of that. I do worry about the lack of social skills and friends, especially since it was friends who helped me survive a difficult family life, but I'm also worried by teachers who seem to have a very prescriptive idea of 'normal' (aka desirable). But we also seem to be seeing increasingly disturbed behaviour at home as ds2 (20 months) becomes more vocal and sociable, and if ds1 is usually like that at school then I can see why they think there's a problem. And you're right about inattention when he's not interested - he was telling me how his 'brain just throws away' drama/singing etc (while retaining every development in the history of navigational equipment). But he is affectionate and very articulate (sentences at 18 months) - isn't that atypical for Aspergers?

Ds2 (5) has a dx of AS. Like your ds he is doing well academically, has a range of interests, and doesn't need a lot of extra help. The dx has been very useful. Ds2 has friends but still finds social situations difficult. The dx means that his teachers are aware that his difficulties are due to more than just him being a late developer or shy etc. It has helped them to find strategies to help ds2.

I also have an 8yr-old ds with ASD and one thing I have noticed is that social skills become more important as children get further up the school. They will be expected to do things like working in pairs or in groups. Things like turn-taking also become more important as children are supervised less closely in the classroom. As ds1 has a dx the staff are aware of which situations he might find difficult and can either give him extra help during the activity or give him very precise instructions so that he knows what is expected of him.

I've also noticed that even though ds1 didn't care in the slightest about having friends when he was in Reception or Yr1, this changed as he got older. He is now keen to join in with the other children and have friends of his own.

In our case a dx has made a big difference but obviously this might not apply to everyone.

Egede on Thu 17-Jul-08 12:31:42

But he is affectionate and very articulate (sentences at 18 months) - isn't that atypical for Aspergers?

Not atall, my DD (also 5) is very very affectionate (and articulate) far more so than my NT 3 yr old DD.

The thing is with AS it is often a case of now you see "it" now you "dont" especially at this young age. To people that spend a limited amount of time with my DD she does appear very NT (if a little odd and quirky) its only when things arnt quite to her choosing or not in her routine the you see the Aspergers BIG TIME.

As she get older (shes almost 6) i can see the differance in her development in comparison to her peer. In lots of way our 3 yr old is far more emtoionally mature than she is .

I hadn't thought about working in pairs/groups, but there's absolutely no way he could do that - either he's doing something (in which case no-one is allowed to touch) or he's not, in which case he won't get involved at all. Oh dear, the more I describe him the odder he seems. And you're right that he seems to be starting to notice not having friends - I was hoping he didn't know, but he said yesterday that he hasn't been to a single birthday party this year (I hope this is because everyone is doing small groups rather than because they're inviting everyone but him). And I've tried all the inviting people round/giving parties stuff - ds plays on his own and we amuse the other child and they don't invite back.

Sounds typically AS to me, not odd at all.

Once you go for DX and you take on the SN label for your whole family, you've got access to lots of interesting stuff. Have you looked up your local National Autistic Society branch at all (via NAS website)? Also your local Children's Information Service, searching under Special Needs. There's all sorts of activity groups for the kids, support groups for siblings and parents etc. Not to mention DLA for his college fund (sounds like he'll need one.)

In fact I've just had a brainwave about a MN penfriend exchange for AS kids! Could match up by age or obsession LOL. My DS is only 3 so we have all this to look forward to.

I like the penfriend idea (though ds really struggles with writing). Anyone for alternative technologies, naval signals and navigation equipment and the physics of gravity, motion and momemtum?

OK, we had a meeting with the LEA's ASD specialist and the school's senco and they've referred him for dx - I was astonished how highly he scores on the Australian questionnaires they use. Now where do I go? Does anyone have time to give me pointers on educating myself about all this?

Oh yes, I'd talk for ages about signals, physics etc given the chance .

Ah, they're using the Australian questionnaires, are they? Good. They're amongst the world leaders.

Educating yourself...I'd start with everything you can read on the National Autistic Society website www.nas.org.uk

then try Tony Attwood's site at www.tonyattwood.com.au/

then have a look at the Temple Grandin Youtube video link at www.youtube.com/watch?v=bgEAhMEgGOQ

It's long (over an hour) but worth watching as Temple is a world famous engineer who is autistic and she explains our world so very well.

Then I'd look out for the "Freaks Geeks and Asperger Syndrome" book and the 'Asperger Syndrome and Bullying' books available on the Jessica Kingsley website, for example.

Ask anything. People here will probably know.

DS, aged 11, has just been dx'd. I see it as protction for him, especially now he's going to high school.

My dd1 is 8 years and we're just starting the process of getting her an official diagnosis. 2 years ago I would have thoroughly agreed with you but the last year has been terrible and its that that has led us to seek a psychologist which first led to us finding out about Aspergers. She knows she's different and it upsets her because she doesn't understand why nor understand how to fit in. We're also changing school to somewhere that doesn't turn around and say "We don't have to do a thing until we see the official paper telling us she has Aspergers" - nice!

Another thought- apart from being able to access help for him, and not getting on the wrong side of the teachers:

if he ever gets into trouble, say by punching out when he has been put in a situation he can't cope with, you won't have a leg to stand on if you didn't tell the school about his SN.

If they do know, then it's their obligation to make sure his needs are met, and punishing him for something he can't help would amount to discrimination. Big difference.

Remember that unless a teacher has been told there is a problem, he or she may reasonably expect a child to perform socially in a way typical of the age group and punish deviant behaviour. The onus to inform lies on you.

My dd has a totally different type of SN so not comparable, but I found when people told me not to label her with a diagnosis that they hadn't read the smallprint. Which was: if she is not diagnosed, she will be expected to perform like other children. And there was no way dd could do that.

It's not really a matter of not 'telling' school because it was his senco who suggested it - I thought any kind of ASD was marked by late talking and lack of emotional engagement so I hadn't considered it. I'm just - still - worried that he's very young and sometimes socially competent, thought admittedly only with adults, and a lot of the questions on the forms seem to relate to things that might be environmental. Yes, he 'talks like a dictionary' but I am a university lecturer in philosophy and discussions in our house are probably unusual, yes he is 'uninterested in children's crazes' but I can see why, and so was I - it seems as if we've brought him up to be slightly 'different' and are now pathologising him for being so. But, at the same time, I don't want to let my own cultural differences mask a real problem for him. Still don't know what to do.

It's worth bearing in mind that school is probably more 'social' nowadays than when your brother and father were at school. Children are expected to speak out more, work in groups and generally be more of a team than in the past. Whereas your brother and father might have been able to cope with school, your ds might notice his differences more.
If the senco has mentioned it to you, then she must already be seeing something out of the ordinary. Perhaps a deeper chat with her might let you know what is happening in the classroom. There are lots of positive characteristics to having an ASD personality and it sounds like your family has generated a lot of specialists.

Nikos, I'm sure you're right. I think I'm just worried about how you tell the difference between a future specialist (not that I mind if he goes into something less skilled) and a nearly 6 year old with ASD. I do accept that the senco and the LEA specialist teacher are probably better at telling the difference than I am, and they agree that his very high scores on the Australian questionnaire indicate the ASD they were expecting, but for that matter half of the people I know at Cambridge would score similarly and, while they may well have ASD, they've not had a label hung round their necks. I don't want us to stop expecting him to make friends. But cory's right, he's already hit a teacher who was trying to force him to make eye contact. Anyway, I've accepted the referral. I just don't want to come to terms with this.

I know what you're saying. In a way it's a shame that we do demand such social skills form children nowadays. We do need people who can focus on ideas in a very expert way.

It might be that the school can introduce some very simple helps for your ds. Things like visual timetables and helping to make transitions in the school day.

Also try and read some positive stuff about ASD. How do your brother and father cope with life? Are they happy? Interested because our ds is being looked at for high functioning ASD.

Egede -- our situation and feelings were so, so similar to yours that I couldn't let that post go unanswered.

Don't assume there has to be a difference between future specialist and ASD 6-yr-old. He could well be both!

Don't stop expecting him to make friends. After a really rough start (undiagnosed) at school, my ASD son's leaving report from primary read 'He has a small but constant group of friends, and I have never known there to be a dispute between them.' Even though they have gone to (four!) different secondary schools, they are still very good friends -- unlike his younger brother, for whom friends seem to be just enemies-in-waiting (sigh).

Incidentally, his closest friends are all bright, slightly odd, techy-minded girls, who are a delight to have around. When your boy can find just one like-minded friend who isn't a pack animal, he'll be away.

Oh god, bloody eye-contact. My boy can't concentrate on instructions if he's looking at eyes. Teach him (if he's willing to play along) to look at their nose, eyebrow or chin instead. Takes away the anxiety for the child and fools the daft adult nicely.

Oh, and my son's current phrase:
Having Asperger's IS normal.

(are you in Cambridge BTW?)

Umm, just thought of one DISadvantage to a diagnosis, as you say you're an academic. You might find it restricts your ability to work abroad if you have a dependent child with a diagnosed disability. (Yes, I know, ouch -- but worth a thought.)

Nikos that's such a good point. Perhaps the most successful older ASD adults are ones that thrived on rigid school routines and predictable teaching styles. Education is so much more touchy-feely (not literally) these days, with academic success measured in vaguer, more social terms rather than test scores.
Obviously family support helps too, my dad (specialist and we all suspect AS) has boundless self-confidence and thinks he is perfect - there was obviously some unspoken family agreement to indulge him on the subject LOL. He also married well (ie completely the opposite of him!), my mum is v empathic and brought us up to indulge him the same way (even though he drives her mad and she totally baffles him). He is such a good role model and so similar to my DS, it is a formula I fully intend to repeat.

Anyway, my point was try not to overthink it, take any help that might make family life easier and just enjoy him.

Good advice not to overthink - it's rather an occupational hazard...and at the moment I'm meant to be writing, which is much easier to get distracted from than teaching (hence sudden mumsnet habit...)

PussinWellies, that is one of the things that worries me. We have long term, much postponed emigration plans and, apart from the immigration issues, the idea of negotiating all of this in a language neither of us speaks is horrifying. Though, obviously, ds1's happiness and fulfilment matter much more and his current school are being pretty good about all this.

My brother is fine, though wasn't at all fine for several years - now married with kids and seemingly settled. My dad is the ultimate mad professor and happy enough in his own world, but hasn't done a great job of either marriage or parenthood. DH and I are also realising, the more ASD stuff we read, that he too is well onto the spectrum (and there was me priding myself on having so not married my dad...)I just wanted my son to find things easier than I did (difficult parents) or DH (doesn't make friends and career hampered by weak people skills). Oh dear, we all sound quite mad.