Engaging Autism - Greenspan's 3 Primary Characteristics. ..... need help understanding :(

[mum2fred]

I?ve started a new thread here (sorry) cos I didn?t want to hjack the other one with my very specific query! In Greenspans ?Engaging Autism? He writes:

^The core, or primary components of autism involve difficulties in the areas of relating, communicating, and thinking. Parents and professionals should consider the following:

? Is the child having trouble establishing true intimacy and warmth; seeking out those adults they are really comfortable with like the mother, father, or key caregiver? Can he show some warmth in that relationship?

? Can the child communicate with gestures, with emotional expressions? Can she get into a continuous flow of back-and-forth emotional signaling with smiles, frowns, head nods and other interactive gestures?

? When the child uses words, can he use them meaningfully in emotionally relevant ways? In other words, are the words invested with emotion or affect so it?s ?Mommy, I love you? or ?I want that juice please? rather than ?This is a table?.

If these three components are not present ? the capacity for intimacy, the capacity for exchanging and reciprocating different types of emotional gestures in a continuous way, and the capacity for using emerging words or symbols meaningfully with good emotional intent, then we should consider that the child may be showing a form of an autistic spectrum disorder.^

MY CONCERN: is that for DS1 (2.5 with a dx of ASD) we can answer ?Absolutely!? for the first 2 primary components. The third one is harder as he is very limited verbally. I would lean towards saying ?no? at this stage. What I don?t understand is that if 2 are present and 1 is not ? is he still (by greenspans definition) ASD? Or much he have all 3?

We have been struggling with understanding all the ?grey? in ASD, struggling to understand how exactly the dx was made,and what are the key underlying issues that we need to address are (NOT knocking the dx as we are estatic to be in the system and know that time will be the greatest indicator)

HI I posted earlier in the week about the triad which if you google it on the website for NAS you will find out more info. Or look up my earlier post I can't remember which one it was on but I am sure there was discussion around it. I'l go back and see if I can copy and paste it here.

I would post this also on the other Greenspan thread.

sounds very interesting!

Found it

" That it's Social & Emotional, Language & Communications and Imagination, they call it the triad of impairment. Some children may have problems in one or all three areas. In each of those areas there may be a rating of one to ten and some children will hit ones in all three and others a ten in one and twos in the rest. Typically Aspergers children have different Language and Communication problems than say High Functioning or Autistic children ie no speech delay but they do tend to talk at you and about the subject they are interested in."

Basically if there is any communication problems it can be language through verbal or non verbal. Not sure if that helps.

V. interesting. My son was not pointing or waving much until about 3 so was very frustrated at 2 for expressing basic wants. BUT he could carry out long intimate involved turn-taking games with me, his father, his brother, his nana - and one of his earliest phrases was "your turn mummy!" We used to say "he can speak boy" when we were rolling around together doing games like "tickle monster".

was always ok with 1 and 3.

Hmmm. So NAS saying that one (or more) of the 'triad' can be low and the other(s) high in a dx of autism. I sort of got the idea from Greenspan that all three needed to be low.

so confused

will post on other thread

Hmm - I know Greenspan's definition of autism differs slightly from the triad - and I think he would probably not diagnose some children as autistic who have been given that diagnosis here. DS2 is fine with 1 and can do 2 but with a much more limited range than an NT child. As far as 3 is concerned, he really only speaks to request - but those words are certainly invested with emotion (desire!)

My gut feeling is that Greenspan probably wouldn't diagnose your DS with ASD - at least until his language develops enough to be able to tell whether he uses it with emotion.

Just to help you my daughter has an Autism diagnosis and I would say that she didn't have any problems in two of Greenspan's areas of criteria. I think what he is saying is that if the child has problems in all three then there is little doubt the child is Autistic, but they can still be Autistic with problems in just one or two of the areas. There is also a massive difference between classic autism and HFA.

I would definitely agree with sphil's first sentence! We've just received the written confirmation of my DS's DX ('fits criteria for diagnosis of autistic spectrum disorder with an asperger's type presentation'). Now, as regards my child we have issues in NONE of the three areas of Greenspan's criteria! In Greenspan's eyes, he would most definitely not be considered autistic. DS is just about to turn 5 and can, absolutely, do all of the things outlined above. Yet still a DX of ASD.

Our DX as far as we can understand it is based on his issues in establishing close peer friendships at school plus a couple of minor 'secondary' characteristics identified during assessments. HOWEVER according to Greenspan (quoting from a document lingle posted a while ago on another thread, to which I am far too incompetent to attempt to link )

difficulty with peers is not the same as lack of intimacy with caregivers. We see clearly that the primary characteristic of autism is not difficulty in peer relationships; it is difficulty with
the primary caregiver who you trust and know well. Almost all children who have warm
and intimate relationships with primary caregivers, over a period of time we can help
them become comfortable with peers if we give them enough practice, particularly in
calm, supportive settings with some facilitation initially....So while the inability to play with peers, the inability to adapt to the preschool environment, the inability to carry out a ten step action plan and instead get involved in repetitive actions, or the inability to cope with high pitched noises or a busy visual environment ? yes, they are all challenges, but they are challenges of a different kind and
require specific interventions. But they are not characteristic in a core manner of autism. Again, it is the ability to engage, interact, and communicate meaningfully and creatively that are the core characteristics

So there we go. Based on that, I would imagine one hell of a lot of children who have an ASD diagnosis in the UK would NOT be DX'd as autistic by Greenspan...

Sorry, that quote appears in a very non user friendly fashion. I SOOOOO wish Mumsnet had some kind of 'modify' function, I really can't understand why it doesn't in this day and age! The quote was supposed to be in bold too. Sorry....

Hi Amberflower (by the way, I think a couple of people might be mixing you up with another well-known poster called Amber).

Will you still be going for that second opinion shortly?

I had a bizarre conversation with our headmistress today during which she made it very plain that she thinks she can meet DS2's needs without a statement by treating him as an individual. She expressed very strong support for the stance DH and I had taken in January at our meeting with the learning support teacher - she seemed very concerned about labelling.

Hiya lingle

no, not the other Amber, I just like the name as a user name!

I have drafted a response to the team who assessed DS and am discussing this with school SENCO tomorrow. Have already approached our GP to make referral for 2nd opinion which he is more than happy to do...just want to get SENCO on side (if possible) before we get the ball rolling.

To me that sounds really reassuring that your DS's headteacher is concerned about labelling and believes the school can potentially meet his needs without statement etc....I am all for statementing where it is clearly necessary but not for the sake of it IYSWIM. As I think we have discussed before - we accept DS's special needs, just not the label at this stage of proceedings - will keep you posted.

amberflower - here is a bit more greenspan which might take your fancy - it is regarding what he believes to be hte misdiagnosis of autism (eg. not basing it on the core 3 characteristics)

MYTH: ?Children who exhibit certain autistic-type behaviors, such as perseverating (e.g., lining up cars over and over again), self-stimulating (e.g., staring at a fan or spinning), or repeating words in a scripted way (e.g., echoing what someone else says) necessarily have an autistic spectrum disorder.?

FACT: These symptoms are secondary symptoms in autism and should not be used as the primary criteria for making a diagnosis. These symptoms are seen in a number of other kinds of developmental challenges, not simply autistic spectrum disorders. They are not specific to autism, and therefore do not characterize the disorder.

not specific to the secondary characteristics you dx seemed to be based on, but re-inforces the idea.

Since our dx a couple of weeks ago we have really been trying to get our heads around what autsm is. Greenspan certainly seems to be one of the leaders in the field, and I love his positive approach.

An intersting aside is that in Australia (where my family is from, though have lived in london for 6+ years)these are the current rates of dx:

• autism occurs in approximately 1-2 in every 1,000 people
• Asperger syndrome occurs in at least 1 in every 500 people

... which seems a bit lower than the 1 in 100 NAS states for the UK. My MIL is involved in SN in Aus and is somewhat shocked that a dx was made under the age of 4. Not to say they dont have early intervention programs for kids flagged-up at early ages, but rather that they wait to formally put a label to it until kids are (typically) around 6, in order to see how the kds develop up to that age with help.

Its interesting that the US, UK, AUS and have such different methods/rates of dx - perhaps it is something to do with funding, i dont know.

im rambling - its nether here nor there really. My ds1 has some signfcant problems in speech and creative play so im happy with the dx to get the attention he needs. i guess we all just find the actual dx, the actual reports so harsh to bear. to read these words from people who dont see all the wonderful stuff and potential there is in the short time they have with our babies

sorry off topic there

Hmmm, interesting topic.
My ds who has 'mild asd' is ok with point no.1. But i would say he is not overly mad of cuddles and kisses, it is me and dh who ask him for cuddles most of the time.
For point no.2 , he can communicate non verbally to an extent , he can point and can show facial emotions and gestures , but it is a bit basic, limited to quite obvious signs like excited, happy , angry, crying.
For point no.3, most of his words have a meaning a purpose but he has tendancy to repeat himself a lot, to repeat what is said to him, to use the same phrases about his interests and constant questioning revolving around his obssessions with vehicles and noises. But he sure show emotions when he says "look mummy a police car!" he gets overly excited and shivers with excitement when an ambulance goes past not far.

Personaly i think a child may be able to perform in all the 3 points mentioned and still be ASD , i reckon it is the QUALITY of the capacity to perform/interact in all the 3 points that should be looked at. I mean my ds show some ability in the 3 points but he shows some mild difficulties or some delay in doing it and this in all the 3 points mentioned. This is of course based of how i perceive my ds'autism, he doesn't lack totally social skills , communication and imagination, but instead shows some difficulties and delays in doing so.

"Almost all children who have warm
and intimate relationships with primary caregivers, over a period of time we can help
them become comfortable with peers if we give them enough practice, particularly in
calm, supportive settings with some facilitation initially.."

This fits DS2 to a T. When we first became worried about his development (at about 2) the withdrawal from engagement with us was one of the major things we noticed. We started doing Floortime and this was quickly reversed, though he would still disappear upstairs if anyone outside the family came round. He stopped doing this at about 4, but up until a year ago (when he started mainstream school) he took no notice of peers at all, except, fleetingly, his brother. Over the last year he has become increasingly comfortable with other children, to the extent that he now recognises his particular friends and will initiate contact with them. School have played a major part in facilitating this.

As far as we're concerned, he becomes more engaged and loving every day. Which is lovely. But would Greenspan say that this makes him not autistic?

mum2fred, thanks for that additional info from Greenspan. I too love his positive approach...

I wouldn't be at all surprised if a lot of the DXing here is funding related. Which is really sad. I mean, in an ideal world, if your DC needs speech or occupational therapy or whatever, surely there should be funding and support for that available without the need to slap a diagnosis on them when the child in question is if anything borderline. But then we don't live in an ideal world...

Yes funding must be a big factor.

Amberflower, I briefly joined a forum called "naturallatetalkers". Whilst I believe your lad has few real language problems, the forum is full of people whose children have, they believe, been misdiagnosed as autistic, mostly in the USA but some in the UK. I stopped posting fairly quickly as I felt more at home here because it is more thoughtful. BUT you would quickly find other people in the UK with similar stories to yours....

I do think that the dx of autism is becoming very lightly given. My ds has it because he tested in that range for the ADOS test and the paed also used evidence gathered from observations by others in a childcare setting. But in a recent home visit by an ed psych, she mentioned that at home it was hard to see our ds as on the spectrum.
We've always been a bit unsure if he was asd and feel sure he would be PDD in the US. He has no repetitive behaviours and only really has problems with interactions, imaginative play and reading body language from his peers. for example, on holiday he interpreted kids splashing in the pool as an aggresive act when they were being playful.

there is something different about him, but it is his rate of improvement and his strong interactions at home which make it difficult to see autism. That's why i like Greenspan, he tends to look deeper.

Sphil, yes, can you grow out of it? is the question. To the extent that you are laying solid foundations of development rather than just coping, then I would say you are.

There does not seem to be any cross referencing or overall guidance on how the diagnostic criteria are applied. It's a bit like a statute with no case law to show how to interpret it. Paeds and their teams may look only at the DX criteria and their own clinical experience. In some ways, I've got bored of the autism label as I rarely come across much that applies to DS1 other than a language disorder (serious one)
Blue sky thinking might involve the autism dx being abolished and a child centred approach brought in ? It annoys me at times that there are so many people making careers out of talking waffle about 'autism' but not really doing much on the ground to help children with problems.

And DS1 has more empathy than DS2 who is a typical NT 2.6 years old who screams 'Mines's' whenever you look near his food or toys. DS1 loves sharing his stuff with me.

I do think if you can get treatment early you can alter the course of autism. Things that seem to work all have in common the kind of 'dragging' children out of their world into yours. Constant interaction so that people become enjoyable.

lingle thanks for that info re the other forum, I will have a look

nikos I agree, I think the ASD DX does seem to be handed out rather lightly these days. Interestingly I had a catchup with the SENCO at DS's school today, just to discuss our strategy for getting a second opinion for DS, and her view seemed very similar. She has also confirmed that the school will provide the support for DS regardless of our asking for a second opinion on the DX which I am delighted about.

cyberseraphim I agree with you completely! My main issue with the whole ASD thing is that although we, who have as parents researched it, know there is a huge spectrum there is just such ignorance about that generally. People assume autism means you fail to interact, self-stimulate constantly and make no eye contact which of course is rubbish in many many cases! And the support that is offered by the supposed 'experts' is not always that great anyway.

My DS (nearly 5 and supposedly ASD) has loads of empathy, very affectionate and loving, and very very in tune to peoples' emotions, facial expressions, tone of voice etc in the 'real world'. He can pick up on changes in my mood before I've realised them myself if you know what I mean! But because, when he was shown pictures of faces during his SALT assessment, and struggled to differentiate between the 'angry' face and the 'sad' face, they concluded he can't interpret emotions and 'struggled to describe how people are feeling' .

I think even if a child is quite genuinely and severely autistic then yes, interventions can make a huge, huge difference. They will still be autistic but they develop and learn coping strategies.

Hmmm

I don't hink allapeds give a dx of autism lightly, ours took ages BUT she absolutely worked with a different diagnostic criteria than greenspan, as do paeds generally in the UK. There is a new IT absed opackage doing the final rounds of testing now that we helped to test and that doesn't use Greenspans criteria, but I think does DX well In a british understanding of the term.

DS1 and ds3 both fit the first point to a degree: both have intimacy but exert absolute control over when and who with (usually just me, very occasionally DH). I couidnt imagine either doing the second but not certain I could do it myself- i'd have to withdraw very quickly as would be uncomfortable to an extreme. POint 3- not ds1 at all (AS diagnoses don't need any speech delay ehre for diagnosis anyhow) though there is usually a functional feature to his choosing to talk- certainly outside the immediate family. But he can do it. He says I love you etc but not so often. DS3 can say I love you etc but didn't until he was 4 and his language is functional yes, to gain attention or get things. That's the full point of it as far as he is concerned.

DS1 has shown no sign of growing out of it- rather as he ages it becomes more obviously asd rather than anything else. DS1 has grown into it more than anything, as he gains ability in some ways he uses that to cage himself into his asd world more and mroe- removing himself from poeple,dictatinga ctivities etc. Before he was so passive, increasingly he is reactive.

But they are what they are. I'm more of a work with the presentation rather than theDX sort anyway.

I agree with Peachy. You are more likely to not get an asd dx than get one lightly. I don't think people realise how hard it is to actually get dx. Your child has to fit a very strict criteria. If you get one then I would say 99% of the time the right dx has been given.