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SALT assessment opinions needed

34 replies

maddiemo · 13/06/2004 21:26

Ds4 is 2yrs 7mths. He has three older brothers one of which has autism.

I have had mild concerns about some aspects of ds4s development. He has many behavious which are on the autistic spectrum but does not seem to have an autistic personality( by which I mean he sems fairly switched on and with it as opposed to ds3 who often seems blank.)

He was referred to SALT and we luckily got a cancellation. At the assessment he refused to look at the toys and took off his shoe and played wuth the buckle. It took a long time for the SALT to get him to interact in any way. She feels that his comprehension is at a two year level and also his language. What concerned her was that his communication, listening and attetntion skills are considerably more delayed. I did not ask as I was shocked at how poor he seemed. She feels he only uses language on his own terms, which is true. He can say "want biscuit" and other two word phrases. However he mostly just whines or screams for things and we have to say to him "out swing" or whatever and he will then repeat it but will not spontaneously use it. He is not consistent on namimg common animals and seems nowhere near recognising colours. When she did get him to interact he would not follow her instruction even if he could understand it. Everything he does is on his own terms. For example he could understand "Give me the fish" but would pick up the bird instead. He could not follow "Put dolly on chair" etc.
He spent a large part of the session trying to escape and whining and saying "lets go". He acn use longer phrases but I can tell these are learned. The SALT said he has good eye contact (but so does autistic ds3). He has been referred for some SALT sessions.

To be honest this appointment was him at his best. We have been seen by audiliogy twice where he has been so distressed they had to open the door and let him out of the room as they were afraid he would injure himself (throwing body against door, banging head on it way beyond calming down). He has also been seen by ds3 paed who could not get him to interact so I had to carry out the tasks. Ds4 was also very distressed at this appointment. The paed did not seem too worried but noted that he had some behaviours and will review at three.

I am not really sure what to make of ds4. He says hello and bye unprompted. He seems with it and perky. He recognises people. He imitates well but cannot yet extend this. When playing with trains he makes choo choo noise. He goes to mother and toddlers, he seems fine but will shy away from children if too noisy and always spends part of the session laying on the floor staring at ceiling.

On the down side he spins objects, lines up and flaps (although the flapping may be copying ds3). His speech shows no sign of becoming conversational. He often lays his head on the floor sideways or upside down and runs cars or trains through his line of vision. He has a lot of routines although these seem about dominance rather than security(for ds3 routines are definately about feeling safe). He has masses of tantrums although they are pretty much over not getting his own way. He is very repetive and will say "want biscuit" over and over until biscuit is in mouth. He gets very distressed when the hairdresser comes to our house,she is unable to cut his hair. He will not allow GP etc to touch him. He will only look at books on his terms.

I could go on and on ( in fact already have).

Any opinions or advice welcome. My head is spinning.

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BlossomHill · 13/06/2004 21:41

Hi Maddiemo

I have a dd who has a speech and language disorder, who also has mild autistic traits. The only real bit of advice I can give is to see the paed. At least that way your mind will be put at rest! Is there any way they can fast-forward the appt. I know when my dd was seen at first by the SALT she was immediately referred to the paed and seen within 2 months. I was worried about autism at that stage but was told that although dd did have some traits the problems were more langauge related and def. along the lines of language disorder!
Good luck with whatever you decide, I know that feeling! BHxx

Jimjams · 13/06/2004 21:45

I suppose (hard though it is) it may just be a case of watching and waiting. Have you tried doing the same sort of stuff with him as you do with ds3? Do you have another pead appointment lined up?

maddiemo · 13/06/2004 21:51

Thanks Jimjams and BH

We are due for a paed appointment around Nov. I guess it is just watch and wait, I have gone from being convinced that everything is fine to thinking that he does have problems but maybe not autism. I am going to try some of ds3 activities with him, the SALT said ds4 would benefit from signing. TBH I have not tried before as it almost feels like labelling him.

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Jimjams · 13/06/2004 22:07

Hmmm I know what you mean. I use lots of ds1 techniques with ds2 though just because I think they're quite good for any child. And his second favourite video is makaton dave! FWIW I think you d get a better idea of what is going on as they get towards 3......

DS2 almost certainly has verbal dyspraxia btw (told on Saturday) so we're going to have to do appointments with him sometime..... (he's 2 and 5 months). I'm starting to do exercises with him, but also watching - and seeing 3 as the kind of "then we will know" age......

coppertop · 13/06/2004 22:14

I guess "wait and see" is probably the most practical advice at the moment. It's not easy though, is it? We're still at the is he/isn't he stage with ds2 so we're on that same kind of rollercoaster.

maddiemo · 13/06/2004 22:18

Ds4 loves the makaton video as well. Agree, things seem to become much clearer at three. At two I did not think for sure ds3 was autistic but by three I knew for sure he was somewhere on the spectrum.

Both waiting for the magic three then

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maddiemo · 13/06/2004 22:20

Coppertop Have read your worries about ds2. It is not easy waiting and wondering. It seems better to know even if it is not the best outcome.

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Davros · 14/06/2004 11:39

Agree that you should try some of DS3's strategies on him and I would definitely try signing, maybe picture schedules or some form of visual prompting. I'm afraid I would be worried from what you've said. If you can do something while you're waiting for the paed appt that will make you feel better and maybe make the picture clearer when you do get to the appt. I must say, at 2 it was very clear that my DS had ASD, although they still ummed and aahed, so if its not very clear yet it may not be too severe and poss lang disorder or something.

maddiemo · 14/06/2004 13:21

Thanks Davros He is very different to autistic ds3, much better language and comprehension.

I have decided to get to work on signing and visual aids and treat him as SEN. It will help him either way and its true that it will make me feel better.

I will just have to wait and see if he has traits of problems or any condition worthy of a diagnosis.

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coppertop · 14/06/2004 21:58

It's definitely the waiting that's the worst bit. Ds2 is at least in the system now. After talking to our portage worker the Paed has agreed to put him on her list for a referral. He's also to be put on the SALT's list. In the meantime we'll probably do the same as you and use SN methods for him too.

Jimjams · 15/06/2004 21:22

coppertop.

Any idea how long you will have to wait maddiemo/coppertop?

maddiemo · 15/06/2004 21:38

Hi coppertop and Jimjams.

JJ We were referred to SALT in March and had a cancellation appointment. SALT reckons we should only have to wait a couple of months for block of therapy. That sounds a bit too good to be true. Has your ds2 been referred to SALT? I recieved the LEA/PCT new criteria for priority for SALT. It is so strict hardly anyone qualifies, but it does seem to have reduced the waiting lists. Ds3 had to wait an awful long time despite having greater needs. As for the paed we are due to see him around Novemember.
I am glad your ds1 review went well.

Coppertop I guess it is better to be on the lists than wondering if you should be on them. Hope your appointments go well.

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Jimjams · 16/06/2004 18:29

DS2 was referred 4 months ago- I think the waiting list is currently around 7 months. In a way I'm not too fussed as I know that the possible dx is verbal dyspraxia and we are treating him as if he has it anyway iyswim.

Do they still do the Hanen programme out of the Phoenix centre. We should have been referred with ds1 - weren't and then got caught in a massive waiting list for the 3 month follow up ("August children? no we're not seeing august children until March". Glad things have improved a bit- when we were there we couldn't get anywhere near a SALT and yet I knew people who were getting 8 weeks of therapy to help them pronounce a couple of sounds (and I mean a couple- I honestly couldn't tell that there was anything wrong with their speech). It seemed to have a real problem with prioritising according to need. Down here no-one gets anything

coppertop · 16/06/2004 18:36

Ds1 has got a SALT visit tomorrow so I should find out then about the waiting list for ds2. I know that when ds1 was referred there was a 6mth wait for an assessment and then another 6 months for the SALT itself. I may even be able to get an unofficial about ds2 when I take him with me tomorrow.

coppertop · 16/06/2004 18:41

An unofficial opinion, that is!

maddiemo · 16/06/2004 20:32

Jimjams Is that seven months to get an assessment? So much for early intervention.
The Phoenix does still do Hanen. I was on the waiting list for it for a year. In the end we got offered early bird which was more suitable anyway. I know what you mean about the SALT. The provision does not go where it is needed and I think my LEA is trying to deal with that. Altough the criteria are so strict I can see a lot of children with genunine needs will lose out.
We have just got back from a protest march (regarding the LEA proposals to reduce unit places) through the town centre. About 150 people turned up. The poor newspaper photographer was trying to get all these autistic kids to stand stiil, hold their placards and smile at her. After we went into the library where the LEA were holding their final consultation meeting. By this time a lot of the kids were so hyped, running up and down hitiing eachother that the LEA may have second thoughts about mainstream being so great for them. My ds3 just sat there staring at the ceiling and looking a bit spacey.

Coppertop Hope the SALT assessment goes well. The SALTs here always say they are not qualified to give an opinion (even an unofficial one). They then have to refer to a specialist SALT who you have to wait forever to see.

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Jimjams · 16/06/2004 21:20

ROFL maddiemo! I\d love to d that to our LEA.

Yep 7 months for an assessmnet and as verbal dyspraxia needs SALT 3 times a week min - ha ha ha - yeah like that's going to happen.

Or in my case maddiemo you see the specialist SALT (fast tracked to her) who tells you that your child " is definitely not autistic or if he is its so mild it won't be a problem" and you then get referred onto an 8 month waiting list for a normal SALT who then can't do anything as your son is clearly autistic. Oh the joys of the phoenix centre!

maddiemo · 16/06/2004 21:33

Jimjams Which specialist SALT did you see? Could it have been MF or MB ( trying to be discreet here) by any chance.

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Jimjams · 16/06/2004 21:36

MF!

maddiemo · 16/06/2004 22:11

Guess who was one of my earlybird trainers?. She also diagnosed my ds3 at his specialist SALT session. We had made a complaint to our MP about waiting lists and I think the team had received a kick up the bum. I knew that ds3 had problems and was thinking along the lines of language disorder or mild asd. She said "He is not asd you know, he is autistic and quite classic, what do you say to that then?" "I can get my job done quickly sometimes".

Actually she was pretty good after that, she was shocked my son had not been offered more support. I think he found her a bit overwhelming. I am amazed she missed your son. Having said that I know that other people have had problems (no/mis/diagnosis)though there have been other factors.

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Jimjams · 16/06/2004 22:44

I'm kind of amazed she missed my son as well. To be fair to her he has always been sociable and has always tried hard to communicate- and he has always showed me things of interest. So because his main problem is an almost total lack of language, rather than a lack of interest in people and being sociable it would have been easier to miss at 2.

However I did tell her all the autism signs - in a kind of "well he's not pointing but he does have some signs of shared attention" type way (after which she out her pen down - peered at me and said "what do you do?" -er read a lot!) So I listed for her very clearly all the signs he was showing. I was also ammeniable to being given the bad news iyswim. He also lay down on the floor and did "funny eyes" through a toy box- "does he do that a lot" she said "yes" I replied "oh well ha ha that's a sign" she said.

Anyway she diagised him with "mild langauge delay" (and added- "although recently he has begun to show improvement in all areas". So yes I'd say she well and truly missed him!

Can't believe what she said to you! These people!

Jimjams · 16/06/2004 22:45

She also said "ummm shall we send on the Hanen programme- um er hmmm no I don't think he's going to need it"

I think she'd be shocked to see him now.

maddiemo · 21/06/2004 19:47

JimJams Thats worrying. I feel that the cdc team here are not always very thorough. They have such long waiting lists that I think the emphasis is on shortening it by passing people through the system without in depth assessment.

The SALT phoned re ds4 and said she would like to refer him to portage to have his social communication and sensory integration skills looked at. I still am not seeing asd in his personality and wonder about the sensory integration. If anyone has any knowledge of sensory integration that would be helpful.

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Jimjams · 21/06/2004 20:00

I think you'll find the BIBIC visit really helpful- and will probably be able to use the programme on both boys.

blossomhill · 21/06/2004 21:23

Maddiemo - What does sensory integration mean? I know what sensory problems are but not the integration. As mentioned to Jimjams on a different thread like to find out what all the terms mean!
Thank you BH