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)

Actually we found it fairly easy to get a dx, but in the context of this discussion no-one made a home visit and Greenspan emphasises the importance of home visits so that one can truley see the range of the child. We're not talking here about a NT child getting wrongly diagnosed. But that a child who has some sort of delay being classed as autistic when they may be something else.
I'm riding the dx as ds has quite a lot of asd type thinking but not the behaviours. It has also brought us a lot of help.

We had home visits by OT, SALT, and someone from the CDD manyb years ago when he was first referreed- a CDC nurse IIRC

The Paed said on our first appointment that she thought he was ASD (esp. taking into account family history) but that she needed to be sure.

Another two times she diagnosed then pulled at last minute to wait and see as ds3's speech delays were so amrked they could have beemn a severe SLD.

Each time that happened it was heartbreak for DH: hope for a DX, hope even for recovery, another wait for actual support.

Obviosuly we ony witnessed the system here- other NHS Trusts might be very different- but here I have absolute faith.

I don't know, but coming from the other side, DD ticks three very clearly, two to some extent, and one not at all.
Hence she is NOT autistic and will never get a dx as such, in UK or here in France. Doesn't mean she doesn't need a lot of help, though!
However, I have heard of paeds giving autism dx out in UK as kids with that dx get more access to services (when there are any!) Here the specific dx doesn't really make a difference to what services are available.

Well, we also had no home visit at all - the DX was based on 2 clinical assessments(with OT/SALT) plus a short visit to school by the OT. But apparently this is only what is carried out for children under 5. For those over 5 any DX is apparently made on the basis of a 20 minute clinic consultation and then either a yes or no. Which to me, I'm sorry, sounds utterly crazy. You could diagnose a raft of NT children as autistic if you observed them for 20 minutes in a doctor's surgery!

I would tend to agree with the view that it depends on your local authority and NHS trust; I would imagine some are incredibly rigorous, and others rather less so. I can quote from my chat with our SENCO this morning "I find that they do tend to fling these diagnoses around rather a lot." So perhaps rather less rigorous in our case, and I have no faith!

As to the child having to fit a very strict criteria...again, I am sure in some NHS trusts that is true. But if I showed you DS's actual report you'd be hard pushed to work out exactly what the criteria were or exactly how he fitted it

Well Amberflower your trust was lacking but there's a worse alternative

A child identified with ASD isn't sent away to no mans land or anything, they often get help though. Better to plough in with the help then relaise a mistake later than what we encountered at ds1's first assessment before we moved:

Pead watched ds1 for 20 minutes chatting to us on request of school:

'Well he does show signs of AS and could well be but I can't cure it som I may as well discharge you'

Fabbo.

Better too much input than zero. labels dont change children and are not, IMVHO, to be scared of.

Blossom i'd noticed that also

Strange huh?

Peachy the negativity towards asd??? is that what you noticed???

we're back to bibic next month woohoo

how are you anyway??? i don't come on here that much anymore......

It was, Bh yes

We're OK- ds3 has settled well into his SNU, and seems happy. DH is part time atm due to a redundancy (he set up part time self employed) but is starting the Uni course he could never justify in September sop hopefyully a positive long term LOL

How's you?

strongly agree Peachy that "Better too much input than zero. labels dont change children and are not, IMVHO, to be scared of.". In a perfect society children with language/social issues would get the support they need regardless of DX - but sadly in this society to get educational support and therapies the D X tends to be a slight help. I suppose I am at the flip side of this, in that DS didn't get diagnosed with ASD, despite having language delay, echolalia, and "subtle social communication difficulties", so I'm not seeing any evidence of DX's being dished around willy nilly...

Yikes ? all I intended by starting this post was trying to understand exactly what asd is!!! I?m new to this, im trying to learn. When a doctor tells you that your son has something, I think it is only right that parents research it themselves? I certainly don?t mean to be negative! I also couldn?t give a flying if my son is labelled ASD, ADHD, PPwhatever?. Bottom line is that -he?s got problems, he needs help! What DOES matter to me is what that label means, because I need to understand that in order to move forward in the best way possible.

Similarly I?m not debating the validity of my dx ? rather trying to understand what traits in my son caused it to be made. It is no secret on here that many struggle to get a dx, I think we all appreciate that. I think it is pathetic that people need some specific form to be entitled to help they obviously need (especially when it is regarding an area which is pretty murky as this thread shows? I digress). But on the flip side, I think we should absolutely support people who think they got one wrongly ? we don?t know their whole story and doctors are certainly not infallible, regardless of what testing criteria are used!! I firmly believe that parents know their children best and are entitled to be informed and connect dots themselves.

As for dx being dished out willy-nilly ? it seems that some are quite swift and some are very considered. We each have our own story, that isn?t to say someone elses is wrong. I personally would say that mine was done on the swift side of things - My ds is only 2.5 and exhibits only a small amount of secondary characteristics. After a referral from a non-specalist, a clear dx was made off the back of a 2 hour specialist consultation where the doctor had his back to my son for all but 10 mins, (seriously. that was it). I do wish we had been given more than one person to look at him and some more explanation on why the diagnosis was made

However whether it is correct or not is not something I'm actually fighting at this point because I dont really know enough. Because I appreciate that he's the professional, I'm not (yet!).

What is really important to me is to understand what is at the core of ASD and how that links to my son and how I can help him.

no offence intended blossomhill. There is just a lot to talk about.

I agree, and think it bears repeating, that incorrectly withholding an ASD dx is a bigger problem than incorrectly giving one.

My apologies too, I did not mean to offend anyone either.

I thought this was a forum to express views...I was expressing mine.

I have actually found the insinuating comments on here very upsetting and distressing, if I am absolutely honest. The ASD label is a huge issue to me. If it is not an issue for other mothers, then good for them. But for me, it's massive. I was only trying to put across my point of view, and I'm sorry if that came across as overly negative about ASD, as that was never intended.

So, as useful as this SN forum is in so many ways, I think this could be my cue to depart it. It really did appear to be a valuable 'refuge' and support from the pressures and difficulties of parenthood...not somewhere where members indulge in playground-style sniping...and I have no desire to take part in that, so I think I'll avoid contributing to threads in future.

I'm sorry, but try as I might I can't see any negativity towards ASD on this thread. Simply a discussion of what might constitute that broad collection of traits and behaviours that are grouped under the umbrella term 'autism'.

I have absolutely no doubt that DS2 is autistic as defined by the diagnostic criteria used here - he was diagnosed by Lorna Wing, and I wouldn't presume to argue with her! But I have wondered, on reading Greenspan, whether he would give the same diagnosis. It's hypothetical - I'm not about to jet off to the States to get DS2 re-diagnosed. What would be the point? He is who he is. But because it's hypothetical doesn't make it less interesting to discuss.

Ah well that's made me sad now. Hope you'll come back soon Amberflower.

Going back to the OP....

I haven't read "engaging autism" mum2fred but my impression from other Greenspan literature is that if you are showing warmth and intimacy at the time of diagnosis his team don't diagnose ASD.

amberflower - there's a lot more to the SN forum than "political" debates as to whether or not ASD is always correctly diagnosed. Those of us whose kids were diagnosed (or not diagnosed) after many years of frustration will naturally feel somewhat differently to those who feel the DX was given too quickly and easily. I think it would be a shame if you feel unable to seek support on here, particularly as you are finding people to chat to on here with a similar scepticisim.

In that case Lingle, Greenspan WOULD have dx DS2 as autistic, because he wasn't showing much warmth and intimacy age 3. It's only since we've been doing Floortime that he's 're-found' his ability to relate - which shows it works, even if we are stuck at Level 2!

Greenspan did a study where he said that 96% of children with alternative disorders like sli were able to enter into complex interactive gestrual communication and social problem solving strategies prior to age 2.

Ds2 usually wanted his brother. So he would call him by name "DS1!" or "wait DS1!". But he didn't point till later.

Anyone seen my head? It exploded 30 minutes ago and may be on your lawn.

So I thought "ok DS2 is autistic then because he would tantrum without pointing to get what he wanted at 2"

And then I thought. "But DS1 didn't point either I don't think, and if he has ASD, well frankly it's the kind of ASD that lots of parents would queue up for and could not be described as a disability without causing people to burst out laughing"

And then my head fell off and I logged out.

amberflower - i find it upsetting also, those comments which pop up here and there treating those of us who were not particularly happy with the dx process as though we are ins some sort of denial. it makes you feel stupid and puts you back a few steps hey? But hope you do stick around and I am particularly interested in seeing how things go for you.

i think people need to be mindful that there are just so many different stories out there that are all valid regardless of whether they are diametrcally opposed.

NOW. Back to the thread!

What is very apparent is how little consensus across trusts and countries what autism actually is what fits into it. I'm finding it overwhelming trying to sift through it all to be honest. There are obviously different schools of thought - Greenspan's books are certainly not the bibles of the NHS!! But all this debate is great. There is no doubt in my mind that in 10 years time we will have different parameters, different criteria, different schools of thought to what we have now. Such is academc evolution. A few years ago i completed a doctorate in australia in a psychology related area, and at the beginning of it i was told Plato's allegory of the cave which essentaily explans ths process, how in seeking truths we make inferences from the obvious, but as we move 'towards' the light, more nad more truths are revealed. Hmmm. Not sure why im burdening y'all with this other than to say it resonated with me to try to be objective when looking at research (AND that the stuff that i had been taught the previous 3 university was potentally all bollocks!!)

Greenspan does seem to believe that it is essential to look at the 'top end' of the behaviour. Eg. He says that if a kid can walk some of the time (but falls down at times or needs support etc) we should judge that they CAN walk - the potential is there. Which is what it is all about. Accessing those small little glimmers where our chld is lacking and opening it wide through engaging in it.

i suspect that if dx'd in greenspans world or in austrlaia, my son would have a dfferent prognosis. however im happy for it as it has opened my ignorant door to Greenspan and his ideas on helping kids develop. Since starting these books 2 weeks ago and putting some of the simple ideas into place (sooo exhausting) we feel our ds1 has come in leaps and bounds, particularly in regards to engaging with our child nad getting him to take hte inititive.

OH - and btw - i have a trip planned to oz later in the year nad am in the process of setting him up of a diagnosis there (as in long term we hope to move back and want to get him in system there) so will be interesting to see what the result is!!!

lol lingle. is THAT what happens to my head every time i try to take ten minutes to read something?

that is a good example of why im so interested in Greenspan's '3 core characteristics' - the secondary ones could indicate anything!!

AND as i read on through the book (i try to do 20 pages a day.... well 10 at the very least ) ive decided that my ds1 is (at this stage) very much a NO for the 3rd characteristic. he does not invest emotion - erbal or no-verbal in his words to the degree I think he should be doing.

flips forward to the chapter on how to deal with that

Sorry if I offended anyone, I though BH as referring to a general negativity? Not just this thread. It was a diversification into chat with someone i've not seen in a while, no more.

However I still do believe that labels are painted as far more harmful and scary than theya re and that the overriding best putcome is to maximise support reagrdless of abel: a great many of the approaches suitabe for asd kids are actually excellent teaching standards for all- such as vuisual timetables, behaviour analysis, dietary mopdification etc

It shouodn't be that you need a label for help (and Heaven knows we have none with several labels!0 but it seems to work that way

Sorry not even this thread

as an aside though there is a flip side to everything: wheras you may well feel that Greenspans system offers the best for your child, I find that it may be detrimental to mine and that's my POV and equally as valid.

i think some comments on here were at best petty and I was about to leave MN also but then thought bugger it, many viewpoints we shoud listen to them all and noy just be offended when poeple disgaree

And perhaps accept that sometime people thread hijack briefly for a minute from time to time