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!

But very very interesting though

Ah yes, but would you rather your children were sane or interesting?

(Discuss with reference to at least three eighteenth century philosophers. I mean, recent threads on mumsnet.)

Totally agree with Nikos. Besides, I often wonder how many millions of people there are out there with undiagnosed ASD who've led perfectly fulfilling lives? Since I've become aware of it, it seems to be everywhere!

In the UK, there are estimated to be around 300,000 adults who've never had a diagnosis of an ASD. Most, though certainly not all, do not live perfectly fulfilling lives, and that's because they've never had a scrap of help in order to do so. They could have done, but were never given that chance.

Many struggle with friendships and relationships, many turn to drink as a way to cope with the nightmare of social events, about a third end up with depression or anxiety bad enough to need help with that.

Some are misdiagnosed with OCD or anorexia or schizophrenia and given entirely wrong treatment and drugs, because the docs have no clue what adult ASD looks like. None at all. There's only a handful of specialists in the whole of the UK who do.

I know that getting a diagnosis was, for me, something that helped me SO much, because I was able to pace myself, be kind to myself, learn to do things in ways I could actually cope with, and realise why so many things were scarier than heck.

As for eye contact, I'd want to slap a teacher who forced me to do it too (though I wouldn't actually slap them!). It hurts. It actually hurts to look into someone's eyes. It fries our brain circuits. It's a form of child cruelty to do that to someone with an ASD, but alas people think they're doing the child a favour in teaching them to withstand the pain/distress from it. Nope.

Higher functioning people with an ASD may well go on to be good scientists/musicians/artists/specialists of some sort. I did. So did my husband. We have a great family life, because we understand each other perfectly because we know why on earth we behave this way.

Can't tell someone what to do, but I'd say it's worth knowing for sure, one way or the other.

Just to add if it's any help to anyone (and convenient distance), there's a new centre for adult Aspergers diagnosis opened in Southampton earlier this year.

Sorry, was typing without properly engaging brain, didn't mean to sound flippant. Fulfilling was the wrong choice of word to use, I think I meant to put functional (or outwardly seeming so, in terms of being self sufficient, having a family, job etc.)

DS1 (now 9) has had a dx of HFA (very similar if not identical to Asperger's) since he was 3 and I have to say that on balance I think it has been helpful in that I think it would have been difficult for him to access the extra help that he has had at school without a DX.

DS1 still doesn't know about his DX tho/

PussinWellies - just curious - why does having a dependent child with a disability restrict your ability to work abroad? This is an isuue thay may affect us and of course I've worried about tapping into services in another country - is there something else I haven't thought of. Sorry if it's a stupid question

I was thinking more of long-term than short-term work. For migration to Australia (don't know if it's universally the case) if you have a child with a disability, they may well be semi-automatically excluded on 'health' grounds. The onus is then on you to demonstrate that they will not necessarily be a net cost to the country -- that they can be expeted to make a net positive contribution, or that the skills of the other family memebers more than offset the cost of supporting this child. Like I said, ouch.

Thanks PussinWellies. Hmmmmmm

Have to say, I suspect this is against all their own anti-discrimination laws...

Hi Egede,

I found this article when we were going down the assessment path with our DD. It explain alot of the differances of being either just a mad proffesor type or a mad professor with an ASD.

www.gt-cybersource.org/Record.aspx?NavID=2_0&rid=11381

Twocutedarlings, thank you, that's a really useful article about exactly what's worrying me. And it makes me think part of the problem here is that he's still so young it's hard to tell what's slow development and what's congenital, but I suppose our assessment (whenever it happens) should clarify that.

PussinWellies, may I ask if your son was bullied or really unhappy before diagnosis? Mine has phases where he seems fine and others when he gets really upset and cowers behind the sofa screaming when it's time for school, usually for reasons he can't really explain. And when did he make friends? And (sorry, lots of questions) how did you explain the diagnosis to him? I'm worried about what to tell my son about being assessed because he's not easy to fob off (understatement of the week).

It's Iceland we fantasize about moving to - mad I know - and their education system is among the best in the world and very inclusive, but even so, I don't speak much Icelandic and we'd be asking ds, who is v enthusiastic about this idea, to acquire and function in a second language, which I begin to think may just be a bit much on top of his other challenges.

OK, let's see:
Bullied: yes, a bit. More just surrounded by baffled kids who would stare at him saying, 'Why does he always cry? Why does he run away? Why is he under the piano? Why does he scream at school....?'

Unhappy: particularly in retrospect, yes, very. At first he was only unhappy (miserable/desperate) at school, quickly forgetting it in the holidays. Then I suppose he gained more sense of time, and SCHOOL loomed over the whole holidays as well. And (also in retrospect) we really didn't help by assuming he needed to get used to it, and would if we were firm about it.

Things he hated about school (not an exhaustive list): crowds, the (red) uniform, assembly, the smell of lunch, the smell (sorry, scent) of some of the staff, the moise, baffling playtime games, the lighting, being asked to speak in front of others, being told to STOP talking, doing things on other people's terms, the feel of the chairs....

Friends: he did better with newcomers to the school, presumably because they weren't part of the mob, or because they hadn't yet seen him under the table screaming. He had one sort-of friend in Reception, one genuine self-chosen friend the following year. It used to take hours of visits both ways before he could relax and really play -- usually they were just about starting a game when I was trying to leave for home. It's taken years for him to visit them without me.

Diagnosis: I told him after various extra assessments when he was about 9 and was starting to question it himself. He was quite pleased and intrigued to learn that though he was unusual, there were enough other children with similar operating systems (techy computer kid here!) for it to have its own name. He knows that he's 'quite like Uncle T but more so' (insert suitable much admired relative here).

Could probably do a PhD in Obscure Things about DS1 by now, but I need to check where they all are. I hope some of this helps.

Oh yes, your final point about moving: in our family, if DS1 is keen on something, it's altogether more likely to be possible than not. He also might stand out LESS in a class where he's not expected to know the language and norms. Some adults with Asperger's would say that school was a foreign country to them anyway.

...on re-reading that (god I do go on), it's the kids I've mislaid, not the Things About DS1.

DX has helped ds1 (or rather us) with lots of things but in all honesty those are things your ds may not need such as statementing, dla etc (ds is a very aggressve as and actually is dx'd as / asd as Aapart from lack of language issues- which he now has but can I be arsed to get a dx review? hell no- he's more hfa with lots of needs)

PussinWellies thank you, very much. Your idea about moving is interesting, I hadn't thought about it that way, and it's true that one of the things that appeals about Iceland is that it's not a culture that much values herd instinct or pack animals, which I think might suit all of us.
Ds would also like the operating system idea, he keeps talking about the 'computer in his brain' which I find unnerving.

Sorry, another qu, but do tell me to find a proper source of info if you like - how do you tell what 'bad behaviour' is ASD and what requires a normal sanction? Really struggling with this at the moment because excitement about imminent going away plus change of routine now term's over is giving us some horrible aggressive behaviour and my usual response would be to get very cross, but if one reason we need a dx is so 'people' (I?) don't think he's 'just being naughty', what do we do when he is being naughty, if you see what I mean?

It's a hard one this - I've posted on this before. My speech therapist takes the view that all aggressive behaviour is unacceptable and should be disciplined. Is he hitting out at you? I do let some things go, but have a zero tolerance for aggression to me. I know this isn't always possible with some children on the spectrum.

I went on a More that Words course run by my local NHS speech therapist. It helped me to understand why ds did some of the things he does and therefore I don't get nearly as angry as I used to. I get irritated but not as blind rage angry as I did. You also speak to other parents and realise their children do the same.
We haven't got a dx yet but close family know that ds is going through the process. It has really helped in the area of them understanding why he behaves the way he does. They are much more gentle with him and as a result his behaviour around them is better.
We've also found that Eye-Qfish oils (get from Boots) have helped with ds's aggression but they don't work for everyone.

I usually manage to divert him before he hits me, though sometimes by physical restraint, but he hit both ds2 (20 months) and dh yesterday and then dh lost it and slapped him to get him off ds2. All my instincts are to protect ds2 and I know that alienates ds1 even more but I'm finding him really hard at the moment and rather dreading the holiday (I work full time usually and can bear the hours at home on bad days because I know I can go back to work in the morning). Sorry, I'm a crap mum but good at my job.

You are not crap, you're bloody human!

My ds1 is renowned for his aggression; he has been seen by anyone and everyone and just ends up being given up on- indeed we just go through the motions really but we do still discipline even if we don't believe he cares.

Our house is kitted out in alarms so I know where he is at night!

So I can agree that discipline has to be done, and also thati dread holidays with him but not the others sadly, much as I love him.

Where does bad behaviour and asd..... hmm, I think when a child is asd all behaviour is asd in that it needs to be handled in an asd appropriate manner; I try to handle (or react to) anything that is socially unacceptable which I think is right with AS; even if it makes sod all difference

Hi, Egede,

I can't offer any advice, but am in a similar position to you in that my son is clearly gifted in many ways, but also displays many features that I think are rather more aspergers than gifted. I still haven't done anything about it, because he's only 4 and is currently being reviewed for possible hypermobility syndrome/Ehlers-Danlos syndrome, so I didn't want to overload him or me with specialists (and my husband gets annoyed when I talk about it)!

I'm basically waiting until he starts school in September, to see whether his current differences iron themselves out to a large extent, or get worse. I just hope this isn't setting him up for misery that could have been avoided... If the teachers at school mentioned he had problems, though, I think that would push me to have him assessed.

I sometimes wish school were still a bit more like it was in the '50s.... he would thrive in a more structured environment.

Thank you! I phoned the NAS who gave some very useful advice about working out what the triggers are - seems, on reflection, to be anything that presents incontrovertible evidence that the world is not taking place in his mind. We're in this weird limbo at the moment where everyone agrees that he probably has ASD and needs further assessment but there's very little support for us until he gets a diagnosis. And really, compared to what lots of you here are dealing with the aggression is very minor - he throws things and hits/kicks/bites when he's stressed (which is rather often atm) but he does stay in his bed at night and is consistently capable of age-appropriate risk assessments when he's not upset. Interesting about schools - I wonder if the change in educational styles is one reason for increased ASD diagnoses - because the kids who are borderline stand out now in a way that they might not have done 50 years ago?