I want to "assess" where DS2 is before the SALT assessment tomorrow

[lingle]

A SALT more specialised in receptive language delay (probably from an ASD unit? who knows) will come to assess DS2 (3.2) at nursery tomorrow. I know it will be more negative than how I think about him and that's ok - doing her job, etc.

Is there any accessible information that would help me find out what kind of place on the speech centile charts he would now be on if my "mum" assessment is right? I'll probably be a bit down after the assessment so want to think it through now.

This is how I would see DS2 in a "snapshot" right now, (sorry so long). If you remember my first posts you'll see how much things have changed....and I really do think that depriving him of recorded music has made part of the difference. It's like a drug for him!

receptive speech:
DS2 understands everything I say to him about our daily routine. He understands my 3-word sentences ("give a banana to DS1")in context. He can understand simple instructions from a different room ("DS2 come back to the kitchen and put your plate away please" REPLY "ok"). Have told DS1 he no longer needs to use 1 word at a time (DS1 did this instinctively to help) but can use sentences.

expressive speech:nearly 150 "real" words now (I said 200 on here in July - I was so wrong! I was just coaching him! but now it's qualitatively different). About 20 of them verbs with 20 other more "not quite consistent" verbs coming.

combining spontaneously into 2-word sentences with more fluency and variety every day (DH noticed a difference after being away for a week). These are increasingly natural-sounding eg "whatsthematter DS1" when DS1 burst into tears or "mummy got hurt" when I say "ow!" after being jumped on by DS1.

still uses a single word to represent the word he can't think of eg when tired he will use the word "open" instead of "cut". Many examples of this. Many overgeneralisations still. eg his water words are "water" "bath" "sea" "puddle" but all other bodies of water such as rivers, waterfalls, streams, etc are described as one of these or as "splishsploshsplash". So doesn't have a word for everything in his life yet (we live by a waterfall, stream, pond etc)

names family members spontaneously with ease ("hello daddy!"). Starting to do the same for other children. But if DH says "hello DS2" will still say "hello mummy" in reply (overgeneralising again - he used to just repeat and it was hard for him to learn to say my name instead of his own). Uses own name in sentences.

Echolalia fading - appears when tired or insecure or doesn't understand someone. Rare now with me but still uses assertive tone + repeat language instead of "yes". Starting to say "yes" before the assertive repeat but this is very much learned not natural to him.

Understands the basic "who" "where" and "what" questions. Just starting to understand answers to where questions that involve "school" "work" or other places that he can't see. Progressing fast here. Always answers "what can you see?" appropriately. Nearly there with "eat" "hold" and "wear" but still muddles them when tired.

No "why"or "when" questions yet. Progressing but not there yet with "shoes on first THEN park" and other two-event sequences. Understands "it's time to" but still doesn't always understand the description of where we're going next.

Just starting to get to grips with under/over on/off etc. Good with up/down.

Lastly, the grandma test: my mum says "this child talks just as you would expect a two-year old child to" (ie she found his speech pretty "normal" but a year or so behind other kids his age when we spent a week with her).

Other areas. Doesn't initiate socially with (new)nursery peers yet. Passive and quiet there. But joins in any physical game initiated by others (involving bouncing, falling, giggling, etc) with great skill, great care for others' space and excellent turn-taking. Visited "old" nursery friend and they trotted off together up to the bedroom after 10 minutes' hesitation (it was his first time in that house) and did about 10 minutes cooperatively on the train track.

Initiates socially with family and especially brother all the time.
When alone, "role-plays" conversations with brother (hardly sings now! poor thing! his cruel mother wanted him to talk instead! My psychotherapist neighbour thinks I'm terrible!)

Understands all my tones of voice and facial expressions. Understands when I'm joking, cross, playful, teasing, etc from either of these. Switched on and engaged with me at pretty much all times even if engrossed in trains or listening to music. There is no activity I can't join in. Not in a bubble. Not in "own world"

Not the most imaginative child but happy to play along with "doggy" going to sleep, waking up, etc. Pretends objects are other objects. Now pretends to be a "monsta" by holding out arms and making monster noise. Wants me and others to look scared and scream in response. It doesn't matter if we don't run away so he understands the meaning of the game is more than physical. When DS1 is a "monster", DS2 pretends to be scared and runs to me to pretend he needs protecting from DS1 but also laughing.

Fascinated by numbers, loves looking at the second hand on the clock, identifies speed limit signs and traffic light colours all the time. Since the days got shorter, adores turning the lights on and off. Lights on and off is the obsession. Does it about 50 times a day if nothing else is going on . Also flushes the loo about 20 times a day. Will pester to be allowed to do this at other people's houses.

Apologies and thanks to anyone who got this far....

blub.

I'm sorry to hear you're feeling down. Try to focus on the positives for now and don't be rushed into conclusions. It's very common for nursery assessments to give a much harsher view than what is seen at home. The issues should become clearer as time goes on and do remember that the current dx criteria allow high level diagnosis on the spectrum. There are 12 families on the Hanen course I go to and some of the children (ASD) are very able as well as being very verbal - I hope that makes sense.

Thanks Guys

Love the mums are always right comment - thank you.
Thanks Cyber.

just another little thought, look how far your little man has come in the last few months, whats to say that he wont continue to amaze even the most cynical of 'professionals'... hes got a wonderful mum, and he IS going to be fine and do great. {{{HUGS}}}

hi lingle, so sorry you've had a rotten day. Coincidentally, we had our long overdue salt appt today, it started wonderfully with ds1 lying down on the floor and refusing to do anything. Thankfully he perked up and co-operated or it would have been a total waste of time.

It's really really hard when they're analysing your ds to such an extent. I know exactly how you feel. Got a report on ds last week which knocked me for six. It took me a good few days to re-read it and realise that actually there were an awful lot of positives in there, and the SENCO who wrote it told me they'd deliberately tried to push ds out of his comfort zone and see how he reacted, so that had showed up a few quirks I didn't realise he had...

I think you have to hold on to the fact that you know your ds1 was so similar at the same age, and is thriving now, and also how rapid your ds2's improvement has been recently. And it really has. The two and three word phrases are great, they're spontaneous and relevant. I can't tell you how similar I think our ds' are, even down to identifying traffic light colours, "it's a green, go go go!!!" at every light across town drives me insane (no pun intended!) Keep your chin up.

Right. Sod them. lingle is back in action. I think the SALT is probably technically good but she is the kind of expert who likes to have the last word. And, as I am the kind of mother who also likes to have the last word, I think there was some powerplay going on between us.
DH pointed out that she seemed to think DS2's "nursery self" is somehow his authentic self and was completely uninterested in our account of him. Why? Does she think I am deluded? That I don't know my own child?

It has galvanised DH a bit which is good.

Hmm, am rereading your posts on this thread T. whilst calming down. Very helpful. I do think that I threw the SALT with my own list (but I'm glad I gave it to her )

Nursery teacher is good and she wants me to visit the paed as it may get her extra resources so I'll do it for her (ie for DS2). But I am absolutely determined that my account of my child will be the definitive one. He's my child, not their case.

I see what you mean T about wishing you'd gone to the paed earlier. But then think about jimjam's experience - the paed sent her down the wrong track altogether and that could have happened to you too. So we can't really trust any of them!

So many of the parents on this site just "know" there's something wrong and so diagnosis is bittersweet but incredibly helpful. I don't feel that way about DS2 at all except in the odd moment when I'm really low- and I haven't felt that way since early September, when I cried (and picked him up and he said "it's alright" spontaneously for the first time). I also have learnt a lot about autism from the autistic people and parents of autistic children on this site, but I have learnt nothing that makes me respect the diagnostic criteria used for autism as it would apply to a family like mine, though I respect the fact that others find HFA a helpful concept. I have no doubt this SALT would have wanted to ask her "three questions" about DS1 so will refuse any diagnosis unless DS2's developmental path shows clear divergence from that of DS1.

Bugger'em all.

awww... i don't know how i missed this thread last night, otherwise i'd have been thinking about you and ds today, lingle.

i think it's natural to feel some initial antipathy towards the pros who are looking at our dc's difficulties/differences - i know i did! i could barely look at the hv who referred ds to salt at first. i was still in shock at what they were telling me and, i think just transferred a lot of that hurt towards the hv.

it is frustrating if you feel that the salt did not get the full picture of your ds. one reason for focussing on how he copes in the nursery rather than at home though, is that nursery is likely to throw up a whole lot more challenges for your ds than home, where he is surrounded by love and understanding.

hopefully what seems like a negative focus at the moment will lead to serious considerations about how to adapt the learning environment to help your ds make the most of his time at nursery.

((((lingle and ds)))))

lingle - it wasn't a paed who sent me down the wrong track- it was an autism specialist SALT who said he wasn't autistic so we couldn't get near a paed and it was this that delayed us.

If you're referred to a paed then you can relax a bit and let the diagnosis (if there is one) take its own time. The problem really comes when you're not referred because then you cannot guarantee that you will receive the correct support before school starts.

Being a few years down the line (and I spent a lot of time with Thomas Sewell's books so I understand why you are reading them) I don't think the diagnosis really matters other than a gateway to support and services. It doesn't alter the child remotely nor is it a slur on the child.

I think telling them what your child can do at home is really useful and if you were doing something like Floortime they would want to see that to incorporate those abilities into a program but - even very severely autistic children act very normally at home. This is a repeated finding in my research. Put the child in charge, don't put too many demands on them, let them interact and- well you might have to work a little harder to keep an interaction going but a lot of the time interactions are very, very normal indeed. Even with very severely autistic children (such as my son) you only really see the problems he has when you sit him down and put demands on him in a 1:1. For example recently I started working 1 on 1 with my son again. Now if I say to him 'go and get your shoes I think they're in the bathroom upstairs' (no gestures/normal speed) he will go up and get them no problem and put them on himself. So I was absolutely staggered when I started working with him to discover that he had almost no understanding of verbs at all. 'Give me the cat' fine. "Give me the cat and the car' fine. "Turn over the car", nothing. And we sat and taught verbs hand over hand. He was obviously working out the sentence about shoes in the bathroom from the two nouns. Shoes -bathroom.

So the point of that ramble being- yes its worth telling the SALTS etc what he can do - and if they're drawing up a program it's helpful if they a) believe you and b) take those competencies into account, but they will only ever be interested in what a child can do in front of them. From a diagnostic point of view this doesn't matter. An NT child will perform in pretty much any environment. If a child doesn't that is in itself notable. I think it's George and Sam where Charlotte Moore talks about Sam being assessed with bricks or something. And he wouldn't do it for the HV so Charlotte said something like 'oh he can do this he just doesn't want to' and the HV said 'yes but he should want to' - which I guess is what I see a lot in my research. It is when you start with 1 on 1 demands that you see the difference. When I show people my videos of children with severe autism I have had quite a few comments along the lines of 'gosh if you hadn't told me that he/she was autistic I wouldn't have known'.

It can be frustrating when you think the pros aren't seeing the 'good side' of your child. And generally they don't. They are often quite stunned when I present my research to them. That's why I'm doing this research- to demonstrate 'real' autism that isn't some deficit driven model which impacts in some ways on services that can be accessed (because the children are seen as not capable hopeless cases and therefore not worth spending money on).

JJ - that's a great post. I'm thinking that (maybe) DS2 was one of the children in your mind as you wrote it . I can absolutely identify where Lingle is coming from - I remember struggling so much with the difference between official assessments of DS2 and how we saw him at home. And I still do this, where school is concerned. When he started we both filled in the P Scales assessment (using B Squared, which breaks down the P scales into smaller chunks - have you seen this btw?) and DS2 was a whole level higher in most things at home than he is at school. But your post has clarified something I've been thinking about in the last few weeks - when he's at home he is mostly in charge, with a predictable routine which he understands, and with people he knows understand him. School is a very different place - he needs to have adult directed attention most of the time - and so it's hardly surprising that his interaction is different there.

Having said all this, school have never appeared sceptical when I've told them what DS2 can do at home (well they can't really, as they've seen a DVD!) I remember being driven completely barmy by an Early Years worker who used to visit us at home - she used to make her mouth look like a cat's backside when ever I reported something DS2 could do, but she'd never seen.

very interesting and useful post jimjams. I think that SALT does have to place importance on how a child interacts with their peers, and the nursery assessment is the easiest way for them to look at that.

I strongly agree with jimjam's point about getting in the paed system in case he needs help when he starts school. I don't entirely think your SALT handled things brilliantly with the 3 questions approach - as it's putting a level of accuracy on diagnosis at 3 that doesn't always exist - as there can be an overlap between language delay and ASD. IME of the diagnostic process - noone is desperate to slap a "label" on a child - in DS's case the conclusion was - language delay, probably not ASD, keep an eye out though for whether social communication etc improves once language improves.

'George and Sam' was the first autism book that I read when I started to realise DS1 really was ASD (after suspecting almost since birth). I'd read Tony Atwood's book on Aspergers earlier on but that was more to understand my brother. I could not see any similarity whatsoever between George or Sam and DS1 ( and I still can't) but I was struck too by the line that 'That's not the point, he should want to'. It made me realise how fundamental DS1's disengagement from social purpose was at that time. We had a similar problem at nursery in that he was much less capable there than at home - for all the reasons listed by jimjams and others. You won't be able to sense if your child is ASD by looking at other ASD children but by comparing with a wide range of NT peers (which is what professionals do). Comparison is everything, DS1 looked 'bad' at mainstream nursery and dld very little there. At the hospital therapy program, he is judged by ASD standards, where he is seen as making good progress with language and cognitive skills.

sphil - I showed someone very experienced with autism a video of your ds (when he was younger and you were doing the signing animal game) and he fired me with questions about his diagnosis afterwards And he is very like ds1 in that in back and forth interactions it can all be very normal indeed. Lack of language can be dealt with quite easily (I know your ds has a lot more now) - it doesn't really hinder. But 1 on 1 with adult directed demands and you begin to see the problems- and what seems to be a pretty common resistance to learning/being instructed. Bloody frustrating when you're doing the therapy as well - I'm very aware of it with ds1. Sometimes it is so easy to communicate with him (usually when he's showing me his books or photos of things that interest him- there we go- sharing interests - very easy and he does it a lot) but as soon as I sit him down at a desk and give him a direct instruction it's like 'hey ho here comes the autism full on'.

"Having said all this, school have never appeared sceptical when I've told them what DS2 can do at home (well they can't really, as they've seen a DVD!)" I always use video to demonstrate what I mean otherwise people don't believe you and assume you're in denial. It was helpful for school to see what ds1 was doing at home, although it doesn't mean it can be reproduced in school (but they do different stuff with him anyway). However, it has allowed them to get an overall picture of his abilities and they've stretched him a little more. They've also started writing down choices when he's unhappy (are you poorly or sad) after seeing him respond to me doing that (which kind of surprised me that he did respond so well) so that dialogue is certainly useful.

One problem with my research is that when I present it I have to be careful that people don't think I'm trying to say that these are children who are misunderstood and don't have many problems. That's not what I'm saying at all. These children can have very big problems (ds1 certainly does- he's 9 and understands bugger all except nouns if stripped of context - operates at a much higher level with context- that's a fairly huge problem) but but but, those big problems do not stop these children interacting very normally in familiar situations with familiar adults and children - the environment can be enabling and life can still be fun and full and interesting. Another thing I like about Floortime is that it aims to work at both the highest and lowest performance levels.

Agree TC about diagnosis. IME if paeds etc are unsure they don't dx ASD (there are good financial reasons not to dx ASD!) but they might say 'ok we need to watch out for a year or 2 and see what happens in the meantime we can provide support in the form or x, y and z'.

Well one positive thing is that the SALT and I both feel he has a real problem with processing streams of verbal information. I feel this may or may not be reinforced by habit. So I can concentrate on that when I see the paed.

: this fits with everything. It fits with his helplessness before music (complex speech just turns into rhythm for him I think). And it fits with virtually daily progress using basic Hanen-style techniques both at home and at one-to-one sessions in nursery. Can anyone with more knowledge comment on the plausibility of this tentative idea? (irrespective of "cause").

I have a strong gut feeling that language is the root of his problems because of the way he plays with other children in situations where he doesn't have to talk even if an adult is not there to "interpret" (which is what he gets on playdates I guess). It was very unhelpful of the SALT to start on the "have you thought about the causes" issue and to be such a dog with a bone about it. She definitely felt the need to be in control. When I said "I want to concentate on techniques not on causes" she could have accepted that. Instead, she regaled me with anecodotes about families who refuse diagnoses because "they aren't ready" and how that is "allowed".

What I wanted from her was what I got from a midwife in my first labour. I was lucky enough to go into hospital when the senior midwife was starting her shift and it was nice and quiet. I remember so clearly the questions she asked me. On the face of it, the question was "how do you feel about an epidural?". But that wasn't the real question. The real, silent, question was: "what kind of person are you and how do I help you to feel empowered so you can do your job most effectively?" And my answer was supposedly something about pain relief but she heard the "real" answer and acted accordingly. Maybe there aren't many professionals like her around.

You would like DS2's therapist at Growing Minds Lingle. He is of the opinion that a diagnostic label is only worth having because/if it gets you services and support. The most important thing is to look at each individual child's neurological differences and assess the difficulties they bring, then work out ways to help the child overcome those difficulties. It sounds to me as if you're already doing that - the issue with streams of verbal info for example.

You would like DS2's therapist at Growing Minds Lingle. He is of the opinion that a diagnostic label is only worth having because/if it gets you services and support. The most important thing is to look at each individual child's neurological differences and assess the difficulties they bring, then work out ways to help the child overcome those difficulties. It sounds to me as if you're already doing that - the issue with streams of verbal info for example.

The problem for the SALT may be that without a diagnosis the support that can be given is limited. This varies from area to area. Locally for example children can access 15 hours of support a week without an official diagnosis, but that is a new project. Previously a diagnosis was essential to access anything really. It can be the key to a whole lot of extra (and sometimes more experienced and appropriate) support. This does vary from area to area though.

I think the idea of a problem with processing streams of verbal information is quite likely. I would say that is probably ds1's major problem and if we could sort that then many of his problems would disappear or at least be a lot more manageable. But it sounds as if you're on the ball with using visual aids etc.

JimsJams descriptions remind me so much of Ds1's interaction. The easiest way of describing how he interacts is that a lot of the time it is either very much on his own terms, or he is following a very familiar routine that he is prepared for. He will love now to say what he is doing or what he can see, or he will now talk about something in the past (though can't place it into context, so he'll say "T turn off lights" to refer to an incident that happened weeks ago). But he's not bothered if you respond or not, or at least can't show he's concerned. He won't ask questions beyond "what's that?" and "where are the?" It's as though he presumes that there's no need to ask the questions, which is familiar with myself as there were (and are) loads of times I was curious about something that wouldn't think to ask someone. He also doesn't/can't want to say how he feels about something or what he thinks about something. He might say "I run with W", but wouldn't be able to say "W made me laugh today" or "I'm not happy with W today". If you ty to have a conversation with him though, try to direct him away towards telling him something or asking him something then it is very difficult without either signs or visual contextual clues and persistence. Not just because of his difficulties in understanding, but because he still struggles with language being used as a two way interaction thing. I have to word things in a certain way to let him know that I want us to talk together and I have to keep things very simple.
He'll be 5 and a half in January and if you ask him about Christmas and ask what Santa does he will either say "Santa bring presents" or "Santa bring reindeer". But that excitement that most 5 year olds whose families celebrate Christmas have is not seen in Ds1. And whilst it could be argued it's just too early in the year, he was the same last year. He loves the presents when he sees them and he loves the trees when he sees them and he likes looking at Santa, but being able to link them all together and understand he's waiting for a special day, he's either not there yet, or he doesn't mind.
In terms of playing games, this is one of the hardest things to explain to people who don't know him well or see him often as he will look as though he's happily joining in. But with the exception of running round, in which case he will follow the other children, games are on his terms as well. He will watch and get his own assumptions and then it is very hard to divert him if those assumptions are wrong. His perspective on the games can differ from what the main purpose is. EG, in "What's the Time Mr Wolf?" dS1 considers the main purpose to be counting the steps and then running round shouting "dinner time". Which is obviously right in one way, but the idea that he should be doing it to either sneak up on the wolf, or be the wolf and chase after others does not matter to him, or he doesn't understand it. He needs an adult, or patient older child, to be with him each time and guide him in the game.
So, in both speaking and in other interactions with people, if you see him for a short while you would think he was a very lively, active, happy lad (well, when he's not upset at something obviously) who was quite happy to be round other people. And it's quite true. But place him in a situation where his routines change or he has to speak or play in a way that takes into account directions or words that he is not familiar with and the interaction becomes very hard.

She does sound a bit patronising if she was talking about things being 'allowed' and it is annoying when a professional thinks they know it all because they have seen your DC for an hour at nursery or whatever. Even with a label of ASD, it's not going to tell you much about the actual 'cause' of the problem your child has with language so yes it's definitely better to focus on techniques to address the problems. Did she say what help would be available with or without a 'label' ?

I suspect she said 'allowed' because sometimes a refusal to accept a dx can lead to a child missing out on help they need. It depends how access to services is organised in a particular area.

I agree a functional approach is a better approach but it's not really one used by local authorities, although there are private practitioners who do.

Personality clashes with professionals can be frustrating, you want to shout that you may not have their medical qualifications but you have done enough research and observation of your own to be credited with some kind of educated opinion on your ds.

You have to get past it if you can and work with your SALT. Can you request a different one if you really feel you're not going to be able to work together? The SALT only has an hour or so to observe your ds, but she has to go on what she sees during this time. Hopefully if the first appointment showed him in an atypical light, the next few will help her build up a clearer picture.

It is so difficult when people seem to be looking for the worst in your child, but ultimately exposing his "weaker points" at this stage should lead to him receiving the correct help. I absolutely dread and hate appointments for ds, but really try to put my own feelings aside, agonising though it may sometimes be.