ASD still confused. Can you be severly autistic AND HFA?

[StarOfValkyrie]

coz that is what ds keeps coming out on on all the tests. When people want to know 'how bad is it'? I sometimes say 'well he's HFA' and sometimes 'he's severe'. These people have started to point out to me that I appear to be contradicting myself. Am I?

I think a child can be High functioning in some areas and severe in others, i think the way the spectrum is (in terms of a scale with HFA being at one end and severe at the other) is wrong, Autism is far more complicated. I find it hard to put dd2 any where on the spectrum, her pead suggests she is HFA and in many ways she is but when it comes to communication i would say she's classic Autism or severe. Her sister on the other hand has Aspergers but dd2 is so different, Dd1 is high functioning in every way (great talker, very bright, good communication if its on her terms), dd2 on the other hand is often in her own little world, was non-verbal until the age of 3.5 and has more sensory problems.

Also i think its hard to tell where a child is on the spectrum when they are so young and changing so much.

It is possible, I think, to be hf on one part of the triad of impairments and severe on another. That's true of my boy certainly. The latest research suggested hundreds of dif genes cd b involved, which explains to me why no 2 autistic kids are the same. There cd be literally millions of diff permutations of this thing we call autism.

You can be severely autistic and that can be HFA

But you can't have HFA and severe autism: it's one of the other

DS1 has severe Aspergers: tests are so basic in their definitions that they don't measure severity, only presentation.

As an example (simplified but ykwim):

Autism is triad of impairments plus language delays and IQ showing learning difficulties

HFA is language delays and triad but average to high IQ

AS is no language delays or IQ under 60 but triad

Now, is a child is very severely sensory affected, or aggressive, or even has an IQ of 62 theya re still severer but don't meet qualifying criteria for diffeent areas

Do you see?

DS1 as a child of ten needing 24/7 supervision even via a TA at breaktimes is in relaity a child severely affected by his ASD; most kids his age are able to walk home, grrab lunch and alk back and they all will do so in a year at comp....... nto ds1 though, not a chance.

Does that make sense?

Apart from straightforward 'classic' autism which requires severe LD, the dx's make no assumptions as to severity of affectation and are simply a label of description.

Oh and the concept of a linear spectrum:

it's have to be either dxd or severity, it doesn't work for both. How would a smell issue so severe that the child is unable to leave home, or phobias that eman child screams at something simple like a car, flag up otherwise?

OK an example:

friend's ds has a dx of Autism, he is fairly self caring, walks to shops, comes home and lets himself in but because he developed langugae at 4 has the dx of HF autism, correctly.

DS1 OTOH could speak at 1 but ahs real problems processing that inforrmationand actually understanding it but atm that doesn't flag up on DSM.

Friend's child on paper is mroe severe but reality is quite different- friend's child has no statement, lower rate of DLA than ds1..... the labels are at their worst simply a snapshot of a moment before the child was 3.

Right well, this is how it is for ds.

Language delay, no learning difficulties, higher than average IQ, rates severe on the CARS test. Meets every single one of the ICD-10 critera (there are 12, but only 6 needed as long as speard across triad).

I get what you're saying but can you just tell me what I tell people?

Either

'He is severely affected by autiosm'

'He has autism, he's bright and doing well but it really affects him right now'

'His aped says it's HFA but that doesn't mean he doesn't struggle a lot'

or 'He has ASD'

I always use the latter with people who don't know ds1 these days; haven't said Aspergers in donkeys actually.....

Yes!
DS was called high functioning by indep ed psych because his IQ now (after 8 months ABA) scores in the average range (just!). But he described his autism as moderate. But I would say his social deficit is severe, his play skills severely lacking, his language delay and rigidity moderate/moderately severe, behavioural issues moderate and his sensory stuff mild. So he sort of evens out as moderate with aspects at either end.

So for DS it is purely his IQ which puts him in HFA not his everyday presentation. But then he is only 3 and I hope his IQ will help him move up the spectrum when he is older

However for SA he was severe and complex!

I think your DS is similar in that is is hard to get through the autism - because its quite severe - to the bright boy underneath. So they are both.

I find this interesting, ds has a diagnosis of ASD & language delay the paed said because his language impairment is far, far greater than than the other triad impairments which she described as traits (social interaction particularly is fairly appropriate when you consider his language delay) - his language development is progressing in the normal way but slowly. He has no 'secondary' issues (routine type stuff//rigidity/obsessions) nor sensory problems (that we've come across so far) and doesn't appear to have LDs but on CARS he scores as near as dammit severe (0.5 point below). His disability is severe - I don't feel comfortable describing him as having HFA but he is not classically autistic & I avoid calling him that because ime people's expectations of him fall through the floor when they hear autism (oh Mrs Phlebas he did give me lovely eye contact today & even smiled [@@]

SanctiMoanyArse has explained it really well.

Star- my dd2 is very similar, i would say dd2 has severe language delay, high IQ, no learning difficulties (met all her mile stones other than communication), most of dd's problems are linked to communication, she has slight sensory issues (nothing major).

I tell people that dd2 has ASD and that we are not sure how severe it is, we may know more when she's older.

Its all confusing, i'm still confused .

Dd2 is dd2 and like all ASD children she is unique.

Yep. DS is bright but his autism is a real problem for him. You definately need someone almost constantly there to reach his intelligence through his autism and slowly pull him out.

I feel his ABA has done that, but he is on a spring attached to the base of his autism and if we let go he'll spring back down. If we keep the spring taut for long enough though it will lose the ability to return to base and stay up dangling in our world and no longer need anyone to hold onto it constantly.

Oh ds3 smiles and gioves eye contact- people who see a necessary correlation there are completely uninformed. The definition of social skills in ASD also covers kids like ds3 who smile all the time and are everybodies best friend and right in yttour face chatty, it's just a different presentation.

I think it can be quite hard to getb your head around teh definitions but if you can it makes sense. ASD is nothing: it is only a title. It can't predict outcome, how the child flags up, where the child's strength and issues will lie.... just a name.

Even severity is random: CARs measures severity of autism, but kids function as part of a wider world- ds3 is severely disabled in that he won't be independent, but compared to other kids he is mobile, has speech, even reads now. It all comes down to how the individual describes it tbh, and where you palce your own cut oiff. To m, any human who cant be independent is severely disabled but to many they are not.

I was very confused when DS got his dx last week.
They said the dx is dual: autism and sp & lang. disorder.

I questioned why autism? his CP always used terms like 'mild asd, possibly borderline'... well this 'mild' word kept coming back until the assessment day.

They said he meets fully the criteria for autism with his scores at the ADOS.
But his non-verbal cognitive test results showed average score, and because he has delayed but fonctional speech and language, it indicates HFA, although the dx will defo be autism and not HFA or ASD.

Can I just add out of curiosity, my son. Breifly primarily down syndrome at the severe end.
Reasearch states that downs with asd are more likely to have a heart condition and that condition is more likely to be the condition my son has, which affects 1 in 100 downs.
They are also likely to have absence seizures...he has.
They are more likely to be even more delayed than the average downs at walking....is 5 year old delayed enough.
He has severe sensory issues around all 8 areas. Is echolaliac, no imaginative play, obsessive, controlling, no social skills, no friends, I could go on and on.........
He has been done on the cars scale and on it, failed most of the m chat, failed most of the ados, however as he has other traits of adhd, odd, ocd and aspergers. There is no way this is right as he is too severe learning disabled to be diagnosed with aspergers, and because of the other concerns don't want to diagnose him with asd either!!!
What do you wonderful ladies make of all this??

Devientenigma- Dd1 has Aspergers (got a dx when she was 4), we now suspect she has dyspraxia (which often runs along side AS) but i cant get anyone to listen to my concerns, it seems dd1 has a dx (AS) and they don't want to look into any other problems she may have.

How old is he Star? I think that affects scores etc.

DS1 came out on CARS as mild/moderate when he was 3 because he is very sociable.

It because rapidly apparent over the next few years he is severely autistic and he is way down (or up number wise I guess) on CARS now.

He's still sociable. But whereas lack of language/understanding/being non-verbal doesn't make you that far behind at 3 it makes you hugely behind at 11.

And although in many areas he has no LD's (excellent memory, genius in some visual measures etc) if you can't understand a sentence then you will have massive problems learning. So he has severe learning disabilities as well.

DS1 uses all the tools he has at his disposal as best as he can and frequently. He just has bugger all tools- fewer than an NT 18 month old.

Hope that makes sense!

Fascinating thread.

Dd1 is another confusing mix. I always say ASD, severely affected.

She is bright and sociable. Chatty. Seems quite average intelligent, bit impossible to test as you.cannot get through any cognitive tests due to her need to control a situation - she starts messing around if she can't see the.point of it, or ifshe is asked something too simple, or of there is an 'r' in the month, etc etc. Out of interest, where is the line drawn for learning disability? At what point does something stop being a delay, or being due to a delay, and start being a learning disability?

Private ed psych we had recently said he was baffled too. On first meeting, she is a girl who should cope in MS - delayed, sure, but good enough language skills, reasonable grasp of the way the world works. And then somethi.g really petty set her off, and the autism shows through, and all of a sudden there is a severely autistic child there.

I think MrsT is right - age has so much to do with it. What OS a mild delay at 4 could well end up being a severe delay if no progression is made in that area. That is the frustrating thing - it always, no matter what intervention, comes back to being a waiting game.

No idea where she would be placed on the spectrum - would depend entirely on her behaviour on the day, I reckon.

"it always, no matter what intervention, comes back to being a waiting game."

Yup and it sucks. I hate being told that I'm a pessimist because he is doing well atm but I know it isn't as simple as that. When he was not talking/no understanding I secretly hoped that speech would be the cure (!). It obviously isn't & I was completely thrown last week when a friend who has a very high functioning 14yo dd (she's pretty much indistinguishable in most circumstances) said she doubted she would be able to live independently.

I am constantly holding my breath waiting for the next thing ... though we're having a spectacularly bad week this week (dog bite last week, tutor off sick this week, I haven't slept since last weds, nursery problems etc etc) & I lost my temper with ds yesterday (he has never even been shouted at) ... seriously doubting my ability to be a half decent human being.

Phlebas I am the same, and tbh I have learned it paysoff.

It's allw ell and good for professionals to be saying but things may well improve- they don't base their lives around it all.

If they make plans that involve travelling to a more diatant Uni for a year to complete training, it won't be scuppered by a lack of childcare as my career was after 3 of the 4 years training.

If I make palns about retirement or whatever that can't happen becuase of carer duties I will feel cheated: if I include the boys in my plans at worst i will be prepared and have found enjoyable alternatives; at best I will be overjoyed by the surprise uprise in outcome.

There seems to be this narrow view of ds3 that as behaviours fade we move forwards: in fact as some things fade- his language is very much better now if still far from a norm as well (always will be, pronunciation affected by scarring) it's replaced by other things; the epilepsy sc reening we are booked for, panic attacks and anxiety....

In life I am normally optimistic (I knjow it doesn't always show on MN) and of the there are always solutions mindzet; on some screenings I ahd to do years ago on a course I came our ridiculously highly as pragmatist. But that same pragmatism that meant we got through all sorts of chnages years ago in an OK manner (taking extra jobs, selling the house etc) means that I have elarned that when it comes to SN and being a carer generally, a good moptto is 'A pessimist is never disappointed' (sigh and simultaneous )

Plus, when it comes to dealing with services, they promote optimism because it lets them off the hook financially. That simple.