difference between HFA and Asperger's?

[thisisyesterday]

Can anyone explain the difference/s to me?
ds1 has just had his second appointment with a paediatrician as part of his assessment process. The first paed said likely diagnosis of Asperger's, second one said HFA.

is there a difference or is it just 2 names for the same thing?

You have obviously thought it through, thisis. I can see that their flexibility, small class sizes and fewer transitions will be positive. My own experience of child led education wasn't very positive as my DS struggled with the lack of structure and tended to monopolise his favourite activities. He was very reluctant to try anything he didn't like. It tended to pander to his obsessions.

You sound quite switched on so I hope you will be able to avoid these issues.

yeah i've been thinking of little else recently lol

it's a "free school", so state funded, but independent iyswim? so there are no fees and we were very lucky to be offered a place

but i still have my moments of "argh, is this the right thing to do"

worst case scenario, it doesn't work and he has to go back to his old school. disruptive (esp for a child with asd) but not the end of the world.
have fingers firmly crossed tho that it will work out well for him

the teacher (who is also the headmistress) does seem very switched on with regard to ASD so hopefully will be good :)

want2sleep, that's the idea, yes. DSM V doesn't take official effect until 2013 but many countries are starting to use its findings, because they're based on the new research that's happening from fMRI scanning etc.

Autism can occur alongside any other type of disability, so we can have autism plus...
Epilepsy, CP, MS, learning disability, visual impairment, hearing impairment, Speech and language delay etc, dyspraxia, dyslexia, ADHD, and so on.

But for some reason we'd focused only on those who have autism plus learning disability plus speech and language difficulties....and called that "low functioning autism". When they re-looked at it, it didn't make any more sense than focusing on (say) people with autism and hearing impairment and dypraxia and calling that "low functioning autism". All we'd proved is that if you have more than one disability at a time, it's usually tougher than having just one. I have multiple disabilities and now cancer myself. I know how tough it gets. But society still expects me to cope, because I can talk.

Plus when they looked at the life outcomes for those with a high autism score (who often also have a high IQ and good language range) they found the outcomes were often worse than for those with a low IQ. Not least because society is so used to having good social skills and an ability to cope fairly well with change that they have no idea what happens to people who don't. Generalising - for many many years we're unable to make friends, get jobs, get healthcare, get housing, or persuade people to do anything at all to help us, in fact. If we try, it comes across as rude and we get a mouthful of abuse and scorn, or ostracism, for our trouble. Or we can't fit the 'help' offered into our routine needs, and find it more stressful than doing without. So we stop asking, and sink without trace into a world of in our own imaginations. That's where I was for many years, and it's the worst feeling in the world to want to show caring and be unable to get it right. Still happens sometimes when I'm too exhausted by life to keep coping. The fear of showing that we're not coping can be terrible, because we know that a percentage of people will kick us verbally and indeed physically sometimes, until we shut up. Easier to do that than to guide us or provide us with a way to do it better, I guess.

So I'm delighted that they're stopping the pretence that "high functioning" is a meaningful term for those who are struggling to survive alone.

here here well said Amber

We need a multi agency approach to Autism whatever level it is...like you say housing/health/socialcare/workfocus etc and wouldn't it be nice that the person with asd would just go to one 'key' person who will help/assist it all rather than be thrown from pillar to post like NT people do, except they can (or even can't) cope with the stress of it all to live independantly as possible with fullfilled life!

I have and will always say that although the person dx as 'higher' functioning doesnt always have the best outcome! My ds going from a low functioning to high functioning yes will have a better reception from society but more expected when it doesnt actually mean ds will cope better long term. If anything the now 'awareness' of self/others/environment and reactions to environment etc can cause even larger barriers including anxiety and depression....which is showing already and wasn't their in the early days! Suicide in AS is very high risk. It is all so worrying and asd/as should not be viewed as a 'neurological' condition but a multiple of needs (as every individual has different needs) and from the start 'multi professional 'response ...health/social/education together...this will never happen as each one NHS/LA's/SS trying to spend the least per person....esp in early days when it is crucial.

You are an insiration Amber

>EllenJane1:The latest diagnostic criteria (DSM 5)
DSM-V will be published in May 2013. We are currently still on DSM-IV. :)

what did awmidlands say????

Dunno, missed it!
Specialmusic, thanks, I do know that, though. (sigh) What I was saying was that paeds are already starting to follow DSM 5 and are often no longer DX AS but are DX HFA instead, under which AS comes anyway. The newer thinking is to remove the individual and maybe confusing and pretty meaningless different DX and lump them together. One of the problems with this is that Aspergers is often seen as a more socially acceptable DX than (scary word) autism. And as Amberlight so eloquently puts it, there are so many varieties of autism, lumping them together seems an easy option. Maybe there is so much lack of understanding of what makes it such a spectrum that one DX is all they want to commit to! I still think if your DC could be DX with AS a dual DX of AS/HFA is most useful at the moment.

The old roman numeral convention for labelling revisions of DSM has been changed for DSM 5.

I wonder if there are different forms of autism...or whether we've been adding in other disabilities accidentally, thus making it look like there's different sorts? On the DSM V proposed lists, it says autism is social cluelessness, great need for routine/predictability, and often sensory behaviours too. (basically). Those are true for everyone on the autism spectrum and are autism. Other things are different disabilities that can occur with it to make it look or sound or appear different, I think. So the new diagnostic process will list them separately and ask for the help for that person to be tailored to their exact needs. I think it'll be good if they get it right.
People can still have mild autism - or severe autism, but it'll be measured on the core criteria, not on other disabilities as well. So for example a score above 42 on the AQ test is 'severe'. Just my interpretation of what I read.

Hadn't thought of it like that, Amberlight. I think I should read your posts more carefully! Trouble is my DS isn't much bothered by predictability or routine but he's so autistic! Perhaps in him the need for sameness shows in his obsessions. He is gorgeous, though.

Well it's all a circus isn't it?

My ds was assessed as having classic autism, rated 'moderate-severe'.

Two independent EPs have told me he will have aspergers in a couple of years time, but he hasn't got it yet because of his language delay.

Then the SALT (a very experienced one wrt autism) suggested that his autism would disappear altogether and he'd be left with a language disorder akin to pragmatic-semantic, and one EP kind of agreed that that would be possible too.

However, both were extrapolating his rate of progress into the future, but since we have run out of money and lost the tribunal, his rate of progress has slowed, so perhaps we are heading for LFA after all or who knows...........

See, that's really confusing, Starlight. My understanding (shoot me down if I'm talking bull) was that if there was (in the past) speech delay, the you could never be DX with Aspergers, it could only be HFA (if HF of course). So although my DS is of average intelligence he will never have Aspergers. Are they saying if he was DX now and you didn't let on about any speech delay?

(part of me suspects that social clumsiness and routine needs are two separate disabilities as well...but I'm keeping that thought to myself! )

If the brain scientist is to be believed, our brains don't stop growing when they should, so bits of them end up bulging into layers they shouldn't be in, and connecting with bits they shouldn't touch/not connecting to the bits they've just passed by. Then they keep growing so they lose those connections and form new ones again, which is why it keeps evolving and changing characteristics (he said). If so, diagnosing exactly what's autism and what isn't could be more a matter for the brain scanner than a checklist of symptoms. Interesting stuff.

Ellen I understood that aspergers meant you didn't have a language delay at the age of 3, but that was decided to be nonsense as lots of people were diagnosed a lot later than 3 and their parents couldn't remember when they started talking, so the dx really is given wrt the presenting symptoms at the time of dx.

I 'think' this was one of the reasons for the whole deletion of aspergers thingy.

Then they started banging on about IQ, but that got all in a muddle because LFA don't necessarily have low IQs but for certain you are unable to measure it.

But I'm not really an expert in this and there are others on this board that have studied it in more detail.

My overall belief is that ds has got 'ds ASD' and that is all there is to it. I have high expectations for him and have concerns about life-limiting labels. I would love however, a much more detailed dx or analysis of his strengths and weaknesses in order to stop generic 'treatments' that have no merit for my ds and enable him to access more targetted support.

I do find it all fascinating, Amber. If I wasn't so closely affected it would be just that, a fascinating study. And you are even more personally affected! Though 'affected' no longer seems the right word for my DS. He is who he is and that's fine by me.

Affected is a good word for me, I think. There's positive and negative effects, definitely.

Sorry Star, crossed. (hmmm star-crossed?) You may be right. I'm sticking to HF ASD for my DS ATM, it seems more accurate than AS as he is less self aware than those I know with AS and is happier for it. (As if changing to an AS DX will give him more anxiety! It's like not wanting to jinx it. Stupid, but...)

I've found this thread facinating as we're currently looking at DS as being dx'd with AS.

When I've tried to explain to people about what is going on, only a handful knew what Aspergers was, but as soon as I said HFA they did understand better, even if they didn't understand properly what the disorder is.

I wouldn't mind if there was one term as its confusing enough as it is!