AIBU to be annoyed at SALT report?!

[mummyplum]

This is becoming an extremely frustrating process in which I am feel like I am being portrayed as some mad cow who thinks her child has something worng when she is presenting as 'normal'. DD was referred to SALT ages ago, but was seen in March. She was excellent, wrote everything down and seemed to be listening to the concerns which were "stammer, echolalia and developmental progress"
Have just recieved the report......

Pen Portrait the Salt outlines there are some difficulties with childs behaviour at home. "Mother stated that child likes to go home a certain way, repeats conversations and uses repetitive phrases". I actually told her that my daughter is extremely difficult to manage, compulsively HAS to do things in a set order and clings to a routine. I also described how violent my daughter will become if she is removed from this routine/compulsive activity. She also has clear echolalia IMO as I described the constant repetition of phrases and whole chunks of material from TV, books and old conversations.

Social Interaction: the Salt outlines that the child uses appropriate eye contact and understands personal space. DD does no such thing and avoids eye contact wherever possible at home. The repetitive behaviours that mother describes were not observed, but then lists one of the phrases that DD says all the time as using language effectively!
Attention & learning the Salt said the child could follow adult direction and did not require re-focusing - this is not true, the Salt actually had to re-focus DD at least twice as she didn't want to play with the toy that she had given her for the task.
Play the Salt states that DD did not demonstrate spontaneous play - I agree here - but then says this is not the case at nursery, and is a mild difficulty, the only recommendation fr this was using a Salt Technician within the nursery for a few session to observe her play skills again.
Understanding of language Salt states that the child understands everyday situations, whereas I explained that this really does depend on the task. DD understood "finished" but then refused to come home.

Salt describes DD as delightful, a pleasure and very lively. Childs social communication skills will continue to develop - the report goes on to report a conficting scene at clinic, nursery and at home... the Salt does agree that the play skill delay had not been observed at nursery but was observed in clinic, so the issues with social interaction may be too subtle to see at nursery.

She did outline in clinic (not on the report) that the SALT service they offer is really only a pre-school screening service - so DD does not need to be on the list or need any support as she presents as normal despite the delay, but she will need to see the Salt Technician and a feeding specialist (for the food aversion) That does not make sense to me - surely its one or the other?

I feel so frustrated!

I was thinking of writing a letter.

I have to agree that the "mother says" style of reporting is horrible, I thought I was used to it by now though tbh.

I get this feeling because DD is looks very sweet and comes as across very sweet (at first) then sometimes people just don't consider that she is infact a child with challenging behaviour!

You can also ask for a second opinion from the trust by phoning the SALT department and asking to speak to the Manager. Ask specifically for a specialist in disordered language and/or communication.

Private doesn't necessarily mean better. I have met fantastically thorough private SALTs and ones that are, well, rubbish. And the same is true on the NHS.

It is quite often the case that the SALTs screening have the least experience. Not always, but often. In terms of the SALT not recognising a phrase that your dd uses all the time as being echolalia, well.. you can't recognise it as echolalia without the repetition. If she used it functionally and in context, this is quite a strength for your dd. It is atypical to rely very heavily on "chunked" and repetitive language, but in some respects it is a strength if it is being used well (this is called delayed mitigated echolalia, e.g. using chunks in context that are functional and make sense). At preschool level, if she is going to have a language disorder or be on the spectrum, this level of verbal ability is a strength vs a weakness (even if it is unusual).

It sounds like you had a short screening assessment. It can be incredibly hard to spot subtle language and/or communication difficulties on a one-off screening difficulty. If it's not being picked up on in nursery, it does sound like her difficulties are presenting in subtle ways depending on the environment she's in. This does not mean that it's not a difficulty, not worthy of attention or that you are being weird or OTT for knowing that something is wrong.. you must trust your instincts on this, of course. However, even though I have quite a lot of experience and knowledge in ASD and language disorders, I know that it is very easy to "miss" subtleties in the type of assessment session this sounds like. At preschool level, many of the children we see may not be talking at all and/or with very limited attention (where refocusing practically means wrestling a child who is bouncing off the walls to the ground), and the contextual variables you need to spot the social communication difficulties of a child who is verbal just aren't present in clinic. I suspect that the reason the SALT technician is being involved is to gather further information in a different context?

In terms of language understanding in everyday situations, I would read from what she is saying that she means the same as you.. that your daughter's language understanding depends on the task e.g. contextual understanding - when a child puts a banana peel in the bin after lunch because every day they are asked to put something in the bin after lunch, but appear to understand "put the banana peel in the bin".

Good luck!

Thanks so much for your replies. Working that reply was so helpful. I have quite a bit of ASD experience, but not in such a young child. Just to be clear on one point as I didn't post it clearly. I was annoyed at the echolalia being missed out after I had explained that the phrase was something she said all the time, but the SaLT then put it into the report as an effective use of language, and omitted my comment. She did say in clinic that it was a delayed echolalia - is this considered normal? This was definitely a shorter assessment. The Salt tech is being used to gather information on her social interaction at nursery, which is no good to me really as I know she is fine at nursery, although she does prefer to play alongside children rather than with them IYSWIM. I know that Salt will be at the TAC, not necessarily the same one so I will be outlining a few things with them.

Well, that was maybe naughty of her, but she may have misunderstood you..

Delayed echolalia is, well, tricky. It's not strictly speaking typical but I hear anecdotally that there is more and more of it being seen in clinic. In my moments of random musing, I do wonder whether the experiences of young children have changed in a lot of ways and there is more scope for it to develop. Every time we see a digger in this house I launch into: "diggers were made for dig, dig, digging, scooping up the earth and lifting and tipping, they make big holes with their dig, dig, digging, they can work all day"... ds is only 18 months but already jargons this sometimes. In 2-3 years time, he may very well be able to "parrot" it, but it would not necessarily be a problem iyswim?

I am not saying that your dd has delayed echolalia of this type.. but I think it has become harder to just see echolalia clearly as a red flag. Things like "Dear Zoo", the "Gruffalo", certain phrases from certain television programmes (with American accent! Ben10, Dora etc) seem to be part of the "repertoire" of many preschoolers now. I used to automatically raise my eyebrows if a child demonstrated this type of linguistic behaviour but more and more, there are children who are presenting with this.

There is a point in language development where formulaic language use is quite typical. I think the easiest example is "whatdat?" for "what's that?" or "uh oh" or a half-said/half-sung nursery rhyme like "twinkle twinkle". Snatches of language used in context but which the child doesn't really understand but uses communicatively? For a textbook child, this is confined to the very early stages of language development.. e.g. the beginning stages. For some children, this formulaic stage lasts longer and for some, it can become a crutch. For others, it may be that they just process and learn language in a different way to that "textbook" child - they are processing language "top down" vs "bottom up", or are a "gestalt" language learner. Many people who are on the autistic spectrum process language differently, for example, and many are "top down" processors.

However, it is worth saying here, I guess, that what I guess we have to remember is that there is not a very substantial body of literature on individual difference in language development. We know a bit about how language typically develops (and this is pretty consistent across languages and cultures) but not enough, and what we definitely don't know enough about is those children who appear to be developing atypically who spontaneously resolve. I have seen some kids in clinic who appear to have absolutely DIRE language/speech/communication at 2.5 or 3.5 who have no outstanding issues at 5.. and these are the ones that actually make it to clinic. Many don't.

Generally speaking, delayed echolalia that makes sense/is in context/is appropriate to the communicative function is really not as much of a worry as the type of self-stimulatory echolalia that the phrase "delayed echolalia" brings to mind e.g. just randomly reciting a television script out of context, at least not in the preschool age. However, it is not typical and is something that needs to be monitored/kept an eye on. To coin a phrase, it may be something or nothing, and it may be too early to tell.

In the preschool years, subtle difficulties are very, very difficult to pin down. And there is cautiousness because of the variability in how it can progress, particularly in very verbal kids.

What I guess you need is support and help on how to deal with the behaviour and develop her language now, right? I don't work with this age range so much anymore so I am not so "up" on what's out there (I work mainly with secondary kids). What are your main concerns about her language?

You've some valid points there of course justabout, it's more the financial aspect from my POV. Also have recently had an experience with a Private therapist writing an absolutely naff report with no substance and was just appalled by the cost of it and the lack of professionalism displayed, when there was much better info coming from the public system/much more thorough assessment (in this particular instance, I know there are many many cases where the opposite happens but this is fresh in my mind).

In terms of a second opinion etc, I've seen this happen a few times in my career and have seen mixed reactions to it. I know of a case recently where a parent I had worked with a few years back was with a new therapist, and then she went on mat leave and the parent asked for a different therapist as she felt that the new one wasn't gelling with her son and that she wasn't really finding her advice easy to follow. It was all fairly amicable.

Where there's been a serious/written complaint or there's been a lot of upset, I think the "follow up" person can end up trying to make up for it which can just seem a bit like dismissing concerns/justifying etc. I know this happened to me in my midwife care (as a patient) - I asked to switch midwife due to a serious mistake being made with test results and her colleague was a bit defensive of her.. but I just smiled and nodded and said: "well if we could just get on with what needs to happen today and leave the past in the past, that would be best for me".

The colleague may be defensive (which is irritating) but on a second opinion in the NHS people are usually very careful to be comprehensive and dot i's and cross t's, in my experience.. so a cheaper initial alternative? And I've never know a child suffer because of it (though there can be awkwardness initially between the adults with both sides being cautious but if the new person is worth any cop that usually doesn't last).

It doesn't matter what our SALTs think, they are only 'allowed' to recommend certain things in certain ways by the LA.

There is a formula to determine no. of sessions and duration required and they have to use this template:

DS will receve up to x sessions of direct and indirect therapy of approximately y duration to include 1:1, observations, report writing, liason, meetings and supervision.

This of course means nothing at all and gives the parents no protection that their ds is going to receive anything at all, whilst not actually causing the SALT to be unprofessional. Grrrrrr.

The LA aren't allowed to influence SaLT or even the EPs employed by them.

Starlight that seems to be the case with alot of professionals here - they are only 'allowed' to do certain things in a certain way.
The only reason DD does not remain on the list is because the SALT I saw told me they are solely there to monitor pre-schoolers in the community before entry to school - children with additional needs are moved onto other services. So i guess IABU in hindsight, DD just doesnt come under her jurisdiction in our case.

Thanks for all the replies :) I can't afford any private assessments for DD at the moment - I have been considering it but only through health insurance, which seems a waste of time if the result will be the same.

working your POV on echolalia was really helpful. DD has been this way for as long as I can remember, we have kept an eye on it.
Sometimes it is in context i'm not sure how coincidental it is though. At the moment alot of it is not. Mainly randomly reciting things as you mention and using alot of scripting IYSWIM - She will say something and expects a certain response from the other person. I guess it could be a strength somehow as she is ahead of her peers in alot of other areas.

Justa Yes, she gets Mid Rate Care - not for these issues, for the medical side. It certainly helps, but doesn't take away the problem.

Oh I know, I would far rather be able to have a more 'regular' day with DD. It is appeasment I guess, to keep us all quiet.

I feel for you mummyplum. The only professional I have had issues with over my DS is the SALT. Like you, when we first saw the SALT she did some tests with DS and listened to what I had to say on his difficulties. When the report came back it was completely at odds with what I saw. She had marked him down on the tests and I did wonder at the time whether or not she was paying attention properly because she was recording his response before he had even had time to make it. He wasn't even particularly slow in responding. Also what she said was at odds with what all the other professionals said about DS. She marked him behind with some things that others said he was ahead on - his vocab for example. Not the same as your issues I know but all the same not an accurate reflection of his ability.

I was going to let it go but she put together a programme for him to work on which he really didn't need and which ignored what really were his difficulties. In the end I wrote to the SALT unit manager with my concerns and she actually phoned me up. Some of what happened she was able to explain to me (although I wasn't convinced but I wasn't in a position to argue). Some things she agreed with me but not obviously - she never said the SALT had done anything wrong as but working said earlier, they can be defensive on behalf of their colleagues. Anyway, upshot was when he next saw the SALT, she didn't say anything but her opinion had completely changed. So did the programme of therapy. That is fine but we wasted a few months there. I think what I am saying is speak to the SALT manager first and tell her your concerns. She may be able to explain why things are as they are but if not, she would be the person to ask for a second opinion anyway.

What are her medical problems, if you don't mind me asking?

Also just spotted your question re: the feeding specialist/SALT tecnician.

Feeding specialists have an additional qualification at postgrad level - there are usually only 1-2 on a paediatric SALT team so it's an internal referral. The screening SALT doesn't have the skills to really advise if the food aversion is behavioural or if there is an actual feeding/swallowing problem so is advising the involvement of someone else (or at least a discussion with that person to see if a referral is appropriate - it isn't always).

As you are on the "path to diagnosis", it's hard to view echolalia as a strength because you will most likely be in that situation where you see "strength" as something that's typical and "weakness" as something that's not because you are, if you like, having to "build a case" that there's something wrong as that's how it happens in our system, sadly. However, echolalia that is being used functionally (even in the context of a diagnosis of a developmental difficulty/language disorder) is still something I'd consider a strength because it's a way to communicate and demonstrates that the child has some grasp of how to match language to social context. This is a foundation that can be built upon. Language use that relies on echolalia is a more rigid, less efficient way of communicating than "typical language" so the leap from non-functional to functional use is significant (even if it's incosistent, as in your dd's case). It's a leap that not all children achieve. IME it's usually a bridge to more flexible language use overall - it's a sign that a child is working out the constraints of language and "playing around" with what you can do with it, how you can use it to make things happen etc.

ASD Traits - probable ASD/AS: loves spinning, licking, hand flapping, repetitive speech pattern (but does have normal speech), obsessive-compulsive behaviour, loves routine & does not cope with change, would rather play with adults than children, delayed play skills, query delayed social skills, often violent (hitting, spitting, scratching, screaming), is hypersensitive in some ways but could throw herself into a wall without any reaction, texture aversion - the list goes on.

Medical mostly since birth: Chronic constipation with overflow- has never done a normal poo wthout the aid of Movicol, urinary incontinence/urgency & frequency. Excema, Low immunity, Recieves physio & long term anti-bs for chronic chest infections & URTI, poor hearing due to repeated ear infections, hypermobility, easy bruising & joint pain in several areas, heart/circulation issues- limbs turning blue intermittently, heart murmur BUT nothing on echo/ecg, Seizures - has had documented absences, drop fits, single afebrile tonic clonic, and myoclonics but nothing on last EEG - the list also goes on!

Just C&P from my old thread. Basically she has alot going on. The feeding specialist will hopefully do the trick for another niggling issue that I have tried and tried with. We have been to a food group run by Surestart, informal messy play, Mini-Mend but nothing has made any difference. DD had a narrow/floppy airway and also had really really really bad reflux as a baby so she has a food aversion and cannot/will not touch or eat alot of foods.

Sorry if I missed this working but I take it you are a SaLT or similar yourself? :)