Anyone know about grades of autism?

[LoveBuckets]

Just wondered, heard someone referred to as having Grade 1 autism recently and was too chicken to ask what it meant.

Absolutely. DS1 reminds me of me in Japan. I understood a lot of nouns and not much else (bit more than ds1) and would guess a lot from context. He does the same. Sometimes I would get it hideously wrong (such as the time I ended up dressed in skiwear for no reason ). But he doesn't even have the same way of thinking underneath. So no direct translation between English and another spoken language.

someone linked something about auditory (?) processing on here (I think) and the article talked about not hearing certain sounds, which I also found interesting... because my ds has had issues with certain kinds of noise - I wonder if he doesn't hear the way most nt people do - he has had his hearing checked and all was well, but I just wonder about that too - sorry getting totally off topic and doing general musing now

I've posted on here before about how the lanaguage issue with AS v HFA isn't always straightforward. Ds1 was dx'ed with HFA because his language didn't develop within a typical timescale. Ds2 was talking by 2yrs and so was dx'ed with AS. As it turned out, ds1's language caught up with and then overtook his peers. Ds2 still has language difficulties, particularly with receptive language.

Aefondkiss - your description of your ds sounds a little like my ds2. The Paed has flagged auditory processing difficulties too.

I think if they did the division as something like 'able to use typical sentences by age 5' vs 'not able to use typical sentences by age 5' they would get a more sensible and workable division.

This is a very interesting thread. We are 'caught between two camps' with DS2 who comes out as the milder end of severely autistic on CARS but is still quite passive at 6. Well, I'm not sure that passive is the right word as he is asserting himself more nowadays - compliant might be better. But his receptive language is so poor it's very hard to explain things to him and expressively he only uses single words, many of which aren't clear to other people. He is also unable to express anything new, because he doesn't have the vocabulary - so, for example, he'll use 'open' for anything he needs help with or wants you to do. All this makes communication very very difficult - but because he's so compliant it's usually very easy to get him to do stuff, even when he hasn't a clue what we're going to do or why we're doing it. It's only recently (I'm ashamed to say) that I've realised how vulnerable this makes him and how we have to work much harder at getting him to understand AND help him to be more assertive by taking more notice when he expresses his feelings. For example on the beach today I wanted to go to the loo and he didn't. I couldn't explain that it was just me who needed a wee - and I tried, lots of different ways. In the past I would have just marched him there - but today I did the 'reflecting back' thing that Hanen taught us - (" I don't need wee, I don't want to go" etc) and crossed my legs. (Thank God for Pilates...)

How well does he understand choice sphil? DS1 used to do anything I told him as he just didn't understand he had a choice not to. Once he did in some ways it was a step forward in others it was oh dear goodbye lots of places we used to go .

I think it is all very complicated imho!

sphil - good point about the vulnerability - I worry about this in a different way for my ds (in that he is not passive but vulnerable)

I do reflect back/model for my ds but because he gets frustrated/angry and I try and give him the words in the hope that that will ease his frustration - usually when dd is doing something he doesn't like... I say dd don't do that, but I ask ds to say the words too...

language is my ds's main problem atm (is it the main focus of people helping /treating children with a "mild" asd?)... so I suppose it is my main interest - he speaks/can communicate but not in an nt way

BTW I think you're right not to march him back now because physically you won't be able to in a few years. So you need to find different ways of getting him to do things. (not that I have btw- just something that I'm aware of now as being a problem).

I've had all sorts of difficulty with people who want to ensure I have 'choices'. I don't want them. I hate choices. I want there to be one answer, not loads. Put me in a situation with choices and all it does is make me want to hide somewhere. They all feel the same, until someone tells me it's the Wrong Choice and does something scary like eye contact or voice-raising.

I have various people who work with me, and a few of them still insist that 'choice' is important. 'What do you want to talk about, Amber? Which of these tasks would you like to do, Amber? We can't pick a task for you - you have to decide which one to do' Well, I don't know. That's exactly it - I've no idea at all. All they're doing is stressing me out.

I can go out alone. Frequently I get into all sorts of trouble by doing so, and end up scared sick. I'd rather be with someone else, but there isn't often a someone else to be with. But since I'm 'High Functioning', almost everyone assumes I'm absolutely capable of making the same sensible decisions as everyone else. Why would I need help, eh?

That really wasn't what I was saying Amber. Of course people with HFA need help and support. And the choice thing I'm talking about is a little different. I'm talking about having no concept of choice. So you offer someone a choice- 'do you want to play in the sand or the water?' for example and they have no concept at all of what they are being offered. It's not anxiety inducing (other than someone is demanding something and you don't know what reply you're 'meant' to give). If you live life with no concept that at this point you can do x or y then the way you process the world will be totally different in ways I don't fully understand. I think it means you have a poor concept of self and probably very little understanding of cause and effect, but at that stage the alieness of the world starts to get so confusing I find it hard to work out.

I know I always return to her, but I think she gets it spot on, so I'll just copy an email that Donna Williams sent to her email list a few years ago. I've probably copied this one before- because I think it does get to the heart of the matter in a way that very few people do (especially with the lack of understanding about the totally alien way that those who are at the 'severe' end of the spectrum experience the world). I think her use of the word 'feral' is interesting, it's one I've used to describe ds1 many times and probably highlights what is so difficult about going say shopping, I often can't get him to walk in my direction any more than I could get a passing pigeon to. I can't get him to stop and wait whilst we pay any more than I could a passing stray cat. He is truly feral.

Hi Donna,

I've just been asked by someone in France whether there is a fundamental difference between a non-verbal individual with autism who appears to be cut off from the world and a higher-functioning autistic person who is able to write articulately about his or her experiences. What is your view on this?

Hi Adam,

the question is a useful one so I'm sending my answer out to my mailing list.

non-verbal can mean infant depression with acute social anxiety and selective mutism
it can mean brain starvation and toxicity due to gut/immune/metabolic disorders
it can mean dominated with mood, anxiety, compulsive disorders till everything is too chaotic to dare build bridges through communication
it can mean lack of simultaneous processing of self and other together with oral dyspraxia
it can mean someone meaning deaf, perhaps also meaning blind who has been unable YET to learn the one word-one meaning system.

If a high functioning person has NEVER been ANY of these things, then they are psychologically, cognitively, perceptually very different
to a high functioning person who HAS once been AT LEAST SOME these things during a conscious phase of childhood (ie AFTER the age of 5)

If a high functioning person outgrew such stages before the age of 5, I wouldn't feel they had the neurological development to retain a comprehensive and cohesive memory about daily life, perception and functioning to really convey that stage in anything but glimpses.

On this basis, anyone diagnosed as a psychotic or autistic infant who was functionally non-verbal and lacked simultaneous processing of self and other, WHO OUTGREW SUCH EXPERIENCED BY AGE 3-5 will not really understand what it is to take for granted that this state is simply one's daily life as a GROWN person.

For example, I came to understand the one word-one meaning system at age 9-11.
Before this I was largely meaning deaf.
I came to hold a simultaneous sense of self and other for 45 mins, long enough to become consciously aware of this process, at age 30 (I had had moment, minutes of it previously, but not enough to become consciously aware of it enough to grasp it as a system or something to seek).
At age 9-11 one is relatively a GROWN PERSON, at age 30 one is certainly a GROWN PERSON
but at age 3 or 5 one is still a DEVELOPING PERSON so one lets go of the earlier phases.
At age 9-11 that is much harder because it is just 'what life is', 'what being a person is'.

I'm now someone who can speak fluently. But there's much of me finds this a foreign system, foreign language, and its tiring. I'm far more about BEING and DOING.
This is perhaps because I came to understand language quite late (had a massive stored repertoire of stored strings before this) or it could be the other way around, that I was late to develop functional speech because the semantic-pragmatic system was not my natural neurological strength.

Just because I can learn to do handstands doesn't mean I was designed to walk on my hands.

So I don't actually relate to those who outgrew these things by age 3 or 4.
Even though I may be in the same HFA group as them now.

Being 'feral' until such a late age changed me in fundamental ways, neurologically I'm more rusty than earlier developers, my batteries go flat quicker, my natural instincts work in other ways, my soul is geared for a more animalistic style of processing and responding and it takes more to consciously try and dominate that in order to survive in the non-autistic world.

I also think that most people with Asperger's can't grasp the world of meaning deafness, meaning blindness and a time when there was NO concept of simultaneous self and other.
Some people with HFA can (generally those who developed communication late childhood-puberty) but most if not all of the verbal HFA people I've met either began in the HFA range or outgrew all but their BEHAVIOURS by age 4.

Autism is not BEHAVIOURS
One can become attached to behaviours long after their cause or necessity has passed.
And one can dump behaviours even when the causes persist.

Some in the HFA range don't GET THIS
but in my world the issue is the perceptual and cognitive challenges
playing on behaviours is circus stunts.

pardon my vulgarity, but I'm logical and practical and I'm almost 45
and I think circus stunts and parading, cloud the gaining of understanding in the field.

Autism has become trendy, like dolphins and unicorns, and I think we need to distinguish identity/culture politics from the realities of the condition.
The cultural phenomenon is real and often useful to those who gain emotionally and socially from it.
But it is NOT where many families of severely challenged kids with autism are living and as a consultant I see this ALL THE TIME.

Yes, it IS a spectrum
Yes, there are different autism 'fruit salads'
But if verbal people are going to proclaim to have extensive experience of the perceptual and cognitive realities of functionally non-verbal people
then this is more than a bunch of flag waving of behaviours.

I suppose if you have no concept of choice then you must have limited understanding that the world is a place you can exert control over so there must be very poor understanding of cause and effect. Your whole life must just happen to you -like being stuck in a river current with absolutely no concept that you swim for the bank. I have met quite a few children who are pre-choice in late chilhood and the gabriel of the book above lives in that state. It makes for huge challenges because you're not even sharing a basic understanding how the world works.

So, Donna says: "I also think that most people with Asperger's can't grasp the world of 'meaning deafness', 'meaning blindness' and a time when there was NO concept of simultaneous self and other."

Yet, looking at the work done by Bailey et al, it's clear that those with Asperger syndrome are usually horribly deaf/blind to the 95% of communication that is non-verbal, and usually to understanding the right meaning of any word that has more than one common meaning. Being in a world where more than 95% of communication is un-seeable, unknowable, is not a behaviour, it's a mental state, and one that is disguised by us often at our peril.

I recall very clearly at age ten that I was in the garden and suddenly realised I was a person - at that moment, I was 'aware' of myself. It was extraordinary. Until that point, I'd had no clue that I was indeed a person. I did things, I'd learned to say some things, but I had no knowledge that I was something separate, or why people were any different from things.

Yes, there are many shades and flavours, but when Donna uses the word "most" in her paragraph, I think she may be overstating the number. Until we find everyone, until we find a way to ask all of them, (not just those of us who in our later years have learned to write like mad ), then I think we're can't know if it's 'most' or 'some'.

Yes, some people with Asperger syndrome can be insensitive s*ds who think they know it all. Goes with the territory. No theory of the mind of others or the experience of others until we have a big enough sample of evidence.

Are we the same as someone who is nonverbal and unable to understand any concepts, at the same age? Clearly not. There's different wiring connected in different parts of the brain, according to which way each individual brain developed. But I still think there's core similiarities in most cases of ASDs. We just need more research to see whether that's true or not, I guess.

As for it being 'trendy', I'm not sure that's ever been my experience. Normally in society a mention of it results in people either ignoring me, or actively attacking me. I've had bullying aplenty, hate mail, and some of the worst attacks have been from people in the autism field who tell me that I know nothing about the subject and have no right to try to help their child. It's been a very painful set of experiences. Trendy? No. No 'trendier' than standing up and telling people you're, say, a schizophrenic, frankly.

Most people I know with an ASD who are out in society lead very, very quiet individual lives. There is no widespread 'culture' from my experience. But goodness me, in a world where most people's reactions are to proverbially spit on us, who can blame some of us for wanting to be with people who have a clue what it's like and who aren't as threatening or such hard work for us? Yes, those without a concept of 'others' cannot join in such a group that easily, but we're not stopping them as far as I know, honest we're not. I'd welcome them with open arms if we can find a way to include them. My own autism charity sets up all sorts of groups and activities for those who are low-functioning, for example.

Present Ds1 with an immediate choice of two options and he can usually make that choice. And sometimes if I ask him what he wants to do in the immediate future he'll tell me. What he can't do is what the council sending us a leaflet asking us to fill in a survey on leisure activities for children with disabilities didn't understand. This was to look at some pictures of activities and select one as something he might like to do as a theoretical option at an unspecified point in the future. Asking him what he would like to do resulted in him saying what he wanted to do that minute, which bore no relation to the choices offered on the leaflet. I was supposed to consult Ds1 about the leaflet and get his views on board. This was impossible as he did not understand what was being asked of him. I tried just asking him whether, for example, he liked swimming, but the response was still for him to say what he wanted to do immediately. If I was to ask him the same things now I'd get a similar response.
It's this difficulty with processing and understanding language and context etc that has the most significant impact upon his day to day life. Eg every morning he likes to mash up his own weetabix. Today he was a little late coming downstairs and so the milk had sort of mashed it a little already. He got very upset, cried and asked me to make it again (I couldn't, we don't have enough milk left) and didn't understand that nobody had deliberately mashed up his cereal. He kept saying over and over "I can mash it, I can mash it".
On a different note he's learned through repetition and rememberance that if he was lost in town to go into a shop and ask a shopkeeper for help. Ask him what he'd say though, or for him to actually think at the time what to do and apply what he's been told with what's happening at the time is a different matter. It's why he now has a tag with pictures on when we go out anywhere so that if the worst happens people know of his difficulties.
And once he's been told the rules for something he can't easily understand that those rules might change in different circumstances. Eg he goes into the boys toilets at school or with daddy because he's a boy. But if he's just with mummy then he has to go into the girls' toilets with her. (The one attempt made recently to let him go in to the male toilets in a supermarket on his own met with total disaster). He doesn't understand why there should be an exception, though we've had limited success telling him there's a special cubicle just for small boys in the female toilets.
The trouble is, is he's just verbal enough for people who aren't aware of his difficulties to presume that he understands everything he's being told. His understanding has improved a lot, but not enough for him to make sense of everything around him.

I'm just talking about ds here....but i do think a person with a dx of aspergers can have no concept of 'simultaneous self and other'.

I don't think ds knew he existed untill about 8.
And some of those 'it can mean' sentences.. I ticked 'yes' to too...and then felt instantly guilty about because i am not suggesting for one moment that it's on the same level.
'Feral' struck a chord with me also tbh.

If we are talking about being able to live independently as a pointer to confirm diagnosis.I'm not sure either.
I don't think ds will be able too. He has little concept of choices and cause and effect.He will need support forever i think.I don't think he is at the level where he could make descions based on a big enough sample of evidence like Amber says.

4nomore has a point.I think the classification by onset/delay of language has a lot to answer for. It seems (to me) an adhoc thing....a temporary measure to use while they are still trying to work it out.

Ds started saying words very early...putting together words at 10 months. By about 12-13 months he was speaking in sentences. It was almost like he had learnt it from a manual...like he'd just downloaded it. I think because of this and his speech now, he got the hfa/aspergers dx.His language is a front. It ofton has little relevance to our world....he talks for himself firstly and to sort out things in his internal world.Most of the time, when pressed, he will answer the rest of the world when it intrudes.. (and because he has learnt that he must).
If we are talking about 'grades' or where someone is on the spectrum, i would probably place ds's brain quite comfortably as more 'classically autistic'...and yet he presents differently in a few sessions of assessment.
I'm guess i'm coming to the conclusion is that language was maybe just one of his specialisms at the time...and yet the value placed on it in terms of current assessment was really huge.So maybe his final dx doesn't describe him.

We are not all in the same boat ...clearly we know that...but we also know that it's not clear cut..not just a case of plotting it along a line.We are just waiting for the specialists to catch up

Has anyone done research on those with autism who have recovery or healing? There is no doubt it is possible for some and seems to happen with a variety of treatments and I think it would be interesting to try and find a common thread or pathway for improvement.
My mum went to a Son Rise presentation a while ago by Raun Koffman and sent me the dvd. I know Son Rise is not everyone's cup of tea, but I was watching the dvd again last night and he was severely autistic and is now not just recovered but so articulate and personable. Maybe these people are a big exception to the norm but it is happening.

If I am interpreting it correctly (and I know I'v written about this before) then I think it's perfectly possible for a person with Aspergers to have a degree of mindblindness and selective mutism. I think I have both. Unless I make a conscious effort (and that is very rare and normally only occurs afterwards, in hindsight) then I can not think that other people are aware of what I am doing. Nor will I think of what they are doing with the sole exception of my lads and sometimes my husband. If I go to a party it may not occur to me to mix with the other people unless someone comes and talks to me I can be sat on my own for a large part of the time. Of course this does help if I am overwhelmed with things. If I go to get Ds2 from playgroup it does not occur to me to talk to the other parents, but instead I will find myself focusing on things other than the people. It's not that I realise and don't care, it's at the time the thing is happening I am genuinely not aware of other people around me, well of course I know they are there, but I don't think that I should be interacting with them. DH did all the initating, including asking for names several weeks after we met and even today, after being together for 15 years I still can not pick up on how he is feeling or even be aware I should be doing a lot of the time. I fully believe that if he had not sat next to me and talked to me (and talked about things completely unrelated to either of us) I would still be single now. In terms of having a sense of self again if I really think about it I know I'm an individual person, but I find it so hard to comprehend that I usually give up on it and return to thinking about 18th century England. I've said countless times that I find initiating and expressing myself very difficult. Ask me to talk about the plot of a book and I can rattle away. Ask me to verbally ask someone to move out of the way or if I can have a drink and you'll usually be waiting a long time.
The difference between myself and someone more severe in these areas is that firstly I know the theory when I think about it later on. Of course at the time I'm not going to think about it. But because I'm high functioning people presume that I understand all the time and at the time what I am expected to do. The other difference is that if someone approaches me to talk I can now usually answer them. Though it doesn't mean I won't get distracted even then. A serious conversation between DH and I yesterday was rather marred by me announcing midpoint "I don't like your beard" because I kept focusing on it and that's all I could think about.

Troutpout you make a good point. I have seen roz Blackburn described as high functioning -clearly she's not-yes yes she has fluent speech but she is still in nappies and cannot be left alone or go out in the street alone. That's not high functioning to me however much speech she has.

I've just had a consultation with donna about ds1 (brilliant btw would recommend). Am still digesting it but something she talked about was ways of teaching ds1object permanence. Of course she's right and although it was clear that he doesn't understand object permanence yet I missed it because I can't quite get my head around a ten year old not understanding that things stay in the same place even when he isn't looking at them. No wonder life is difficult.

Oh, so is that why he gets upset when he misses the beginnings of sequences?

Very interesting about choices. DS2 has definitely become less passive since he (fairly recently) came to understand choices(though it's only at the level of 'do you want grapes or banana'). Or maybe it's that he can now articulate his choice - so he'll now say 'grapes' or 'banana' as a true choice, rather than just repeating the last word said. Learning to say 'no' has been very powerful for him too!

Re Donna Williams:
"it can mean lack of simultaneous processing of self and other together with oral dyspraxia"

I am sure this is why DS2's progress with language is so slow - as far as I can tell he has very little perception of himself as a separate person and I am positive about the oral dyspraxia - he often comes up to me and I can almost hear the wheels turning in his head as he works out what he wants to say.

Oh sphil we need to talk offline donna has given me such great advice that I'm sure will benefit your ds2 too I'll email you today.

Ds1 still has NO concept of yes or no. Just have not been able to teach it. I remember my other 2 getting yes and no as tinies and the difference to them having that concept made in their interaction/understanding of the world.

Oh sphil we need to talk offline donna has given me such great advice that I'm sure will benefit your ds2 too I'll email you today.

Ds1 still has NO concept of yes or no. Just have not been able to teach it. I remember my other 2 getting yes and no as tinies and the difference to them having that concept made in their interaction/understanding of the world.

Oh sphil we need to talk offline donna has given me such great advice that I'm sure will benefit your ds2 too I'll email you today.

Ds1 still has NO concept of yes or no. Just have not been able to teach it. I remember my other 2 getting yes and no as tinies and the difference to them having that concept made in their interaction/understanding of the world.

always so interesting to read these discussions, many thanks.

The "choice" thing was certainly a Rubicon for us at 3.2. Being "pre-choice" as you put it was the biggest difference between DS2 and other children I think.

agree about language at 1 or 2 or 3 or 4 being an arbitrary dividing line

for those who are so inclined and can probably explain this video to me in an idiot proof manner

High-Functioning Autism and Asperger's Syndrome: Diagnosis, Current Research, and Treatment Options

Presenters: John Brown, Ph.D., Marjorie Solomon, Ph.D., MBA, & Sally Ozonoff, Ph.D.

Affiliation: UC Davis M.I.N.D. Institute

I met a chap today who was DX'd autistic around 7, was non-verbal for much of that, late 20s now. I didn't get a chance to chat to him much as he was busy playing with my kids but his wife told me, said he trained himself into 'normal' behaviours and she says he's good at picking up her feelings. I'm guessing he must have had one of those moments of self-awareness and realised that he was separate and had some powers of his own to control the world and how he dealt with it. Will give them both a good grilling (nicely) next time I see them.

My friend met a guy who didn't talk until he was 13. Now pretty much HFA/Aspie. Such a strange disorder. I've actually met quite a few kids now who start talking in their teens (although never one who has made the progress made by the guy my friend met).