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ASD - mild, moderate, severe, Classic, HFA, AS...

93 replies

lougle · 20/12/2012 15:29

Can someone clarify something for me?

I saw on other threads that HFA is ASD without language impairment.
AS is ASD without language impairment at age 3?

Is that so?

Say DD2, who is being seen in January, is dx'd with ASD, but it's taken until she's 5 for us to be sure there is something not quite right and she most likely has some disordering of language...what would that be?

Would she be likely to be classed as HFA because in many areas she can pass for NT to the untrained eye? Or would she be classed as ASD but mild, because she has language disordering? I'm all Confused

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Handywoman · 21/12/2012 11:44

ilikemy wrt classifying 'severity' I thought the aim with the DSM-5 was to move away from 'yes you have ASD - see you in a year' to a diagnosis accompanied by a full profile of strengths and weaknesses so that it dovetails with intervention. I saw that in a podcast recently from a conf. re the new DSM-5, can't remember which one. Was it the one at the Institute for Education?

Getting a diagnosis can be hard enough so I am dubious about whether or not we can rely on professionals to write a report that truly captures the essence of each ASD-diagnosed-kid's 'profile' without relying a hell-u-v-a-lot more on parental report, which seems to count for relatively little at present unless parents are especially persistent.

I am interested in the point bout supplementation being recommended across the board - what supplement(s) would this be?

Thanks, handywoman xxxx

amberlight · 21/12/2012 11:51

It depends how we define "autism", though.

No-one would doubt that a child who is incontinent, non-verbal and self-harming extensively is not mildly disabled. But is that autism? It's a very sensible question that the experts are asking.

Autism is none of those specific things on the diagnostic list.
So it's maybe severe disability - but it's not in itself autism from that list. It's other things that can occur alongside autism. There may well be autism as well . In the past, any really severe behaviour/learning difficulty/delay was often called autism, yes. And at the time that seemed like the right use of the word.

If we have a friend who is suddenly unable to walk and is now a wheelchair user, do people tell them that their disability is mild because they are nothing like that child who is self-harming, and because they can speak in sentences? If so, how fast can we duck from a handbag round the ear from them? .

Severe autism is severe lack of ability to decode and use social signalling, combined with severe lack of ability to cope with the unexpected, combined (usually) with severe sensory processing difficulties of one kind or another. That's the quick summary of the definition in the new DSM V. Many overcome those odds - but to do so often means being punished endlessly. Services withdrawn, help withdrawn, scorn aplenty if they foul up on communication. The moment toilet training happens and sentences happen, the wheels come off the support for them and their families.

Using lots of language seems like a brilliant thing. But using it without a clue of its impact on others is like saying, "my child can drive a 100mph sportscar". Great - but can they drive it safely? Can they even see where they're going? With autism meaning severe lack of ability to control social language, the net effect is "crash and burn".

Relationships? Crash
Job? Crash. crash crash crash, one after the other.
Schooling? Crash.
Friendships? Crash. Cndless crash.
Hobbies with others? Crash.
One desperate soul-destroying crash after another.
It's great to be able to use the toilet. But using it when stuck in a low-rent single room in a social housing block, tortured by noise and flickering lighting overhead, alone, isolated, with no money, no friends and no social life is not all any parent wishes for their child, I'd say. Yet that's the lot of most of the really allegedly mild cases of autism where people can speak.

It ain't often mild, in other words. It's what causes only 15% of us to be in work. It's why 75% struggle to find a single friend. It's why 80% have big problems with bullying. It's why so many are spending a lifetime on anti anxiety and anti depressant medication, why so many are at risk from running away, why so many end up homeless and destitute. The intense loneliness and desperation and inner pain can look really mild if we measure it on things like toilet training and speaking in sentences, yes. But is it?

All big questions. I don't have all the answers. I do know that I have friends and colleagues from all parts of the spectrum - verbal and non-verbal, severe, moderate and mild, with and without other disabilities - and we all agree that we could do with a world that stops causing us pain. And stops forcing parents and teams to make us sound like soulless monsters in order to get a tiny bit of help...A world that starts listening to parents and children and teachers to find out what makes a difference. I want brilliant help and support for any child who is struggling. And brilliant help and support for every parent, carer and teacher who encounters wonderful young people with so much to offer the world...if only that world will give them a chance.

willowthecat · 21/12/2012 11:54

I agree with Moondog - there is too much time wasted debating whether the angels dancing on the pinhead have got AS or ASD or HFA without or without a side serving of LD's etc etc. I've steered clear of all the autism debating after realising it was getting neither me nor ds1 anywhere in practical terms. I just go for the issues now - which for us are language and learning difficulties. The problem with overanalysing the diagnosis spectrum is that it changes so quickly you can't keep up with it anyway.

PolterGoose · 21/12/2012 12:10

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mariammama · 21/12/2012 12:10

zzzz and amberlight, thank you. The "asd 215" suggestion, and the description of the impact of poorly understood asd should be printed out and pasted on the office wall of every paediatrician and psychiatrist in the UK.

zzzzz · 21/12/2012 12:24

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zzzzz · 21/12/2012 12:33

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Handywoman · 21/12/2012 12:47

Thanks zzzzzzz

HotheadPaisan · 21/12/2012 13:37

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sickofsocalledexperts · 21/12/2012 13:38

Moving post fron Amberlight, thank you.

I am thinking that maybe we need "autsm 123" but aso something re Learning Diffs.

Sometimes I think my DS's autism is between moderate and severe (eg he is not rigid) but his Learning Difficulties, plus verbal dyspraxia and hyperactivity are really his main presenting problems. An average or high IQ is very very different to an impaired IQ, in all areas of life and especially independence.

HotheadPaisan · 21/12/2012 13:59

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Ineedpigsinblankets · 21/12/2012 14:15

amberlight, your post at 11.51 really struck a chord with me with regards to my Dd1[24].

She doesnt have a diagnosis but I have always felt that she has ASD. She was nearly given an ADHD dx when she was 9 but the proffs decided to blame my parenting instead.

All her life I have described her as a pin ball. she quite literally pings from one disaster to another. I really feel for her but am really unable to help herSad

zzzzz · 21/12/2012 15:37

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lougle · 21/12/2012 18:28

Today, she said 'Why did we call Patch (the dog) Patch?' I said 'It was Grandad's idea, because Patch has orange patches over his eyes.'

'Patches of oranges??? Where are they?'

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lougle · 21/12/2012 18:30

The idea of a 'profile' is interesting. My worry would be that Social Services departments would use it as a criterion for access. Can you imagine it? 'We do not accept referrals for ASD123, 415....or 'we do not accept referrals for children who score less than 2 in any subsection...'

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sickofsocalledexperts · 21/12/2012 18:42

Oh yes it would be a minefield, with schools saying "Bobby is 111" to avoid funding an actual 555.. But then it is all pretty much a minefield already.

Where it might help is to show what progress an intervention has led to - eg I might say ABA has got DS from 424 to 312. But then they would disagree so we'd be back to square 1.

And yes, a recent study did show IQ is way too blunt an instrument to measure human brains - but I guess it is all we have, until someone combines it with EQ and commonsense-q.

devilinside · 21/12/2012 19:02

My ds has a diagnosis of ASD (HFA). He spoke before three but it was only direct requests. No social chit chat whatsoever. He ignores questions that are illogical (ie asking him for food if he isn't hungry) he doesn't have the theory of mind to realise, I don't know that he isn't hungry. I only know this because I am like it myself, and annoy DP on a daily basis!

zzzzz · 21/12/2012 19:08

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Allonsy · 21/12/2012 21:04

I also find the asd criteria confusing. Ive suspected that ds1 may be on the spectrum but its confused me in that he definatly does not shy away from people hes very in your face wants to everyones friend its the way he goes about it thats odd. He started talking at 13 months, then stopped. Started again age 2 it came on very slowly though hes nearly 7 now and i personally think his speech is a bit behind still. Wether that would make him (if anything) HFA or AS boggles me.

HotheadPaisan · 22/12/2012 21:19

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zzzzz · 22/12/2012 21:25

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MerryCouthyMows · 22/12/2012 22:12

Hothead - here LD's mean zilch, only behavioural issues that present IN school as well as at home. Hmm

So it doesn't matter a jot that my 14yo DD who functions like a 9/10yo due to her LD's has a two-hour meltdown every flipping morning that ends in me DRESSING her to get her to school - because she GETS to school and copes just about ok there, they won't help me at all...

I think an ASD432 classification WOULD help, FWIW.

HotheadPaisan · 23/12/2012 09:52

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zzzzz · 23/12/2012 10:46

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HotheadPaisan · 23/12/2012 11:03

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