SALT question, am I wasting my time chasing help for my AS ds?

[Peaceflower]

ds is 9, with no obvious language difficulty, apart from speaking in an pseudo american acccent, and sentences tailing off into mumbles . He only spoke a few words at two but was speaking in sentences by 4.

He had a SALT assessment and hearing test when he was 4, hearing was deemed ok, and speech okay apart from a lateral something which I forget.
However he finds communication very very difficult. He does not know how to respond to eg a friend running up to show him something - he will respond by saying "yeah, so what" and is oblivious when the friend runs away feeling hurt. He does not know how to ask for anything, eg if I forget to put cutlery out for him, he will sit in front of his meal quietly and not say anything until I ask why he is not eating! At school recently, he missed the lunch bell and did not eat or drink anything all day. He did not think to say this to his teacher or anyone else, but was in distress when I picked him up at the end of the day . He does not seem to be able to say/ask when he needs something.

There also seems to be a delay processing what's said to him, and he compensates with strategies like "oh, that's easy", "oh, what was that again", etc.

I spoke to a friend who is a SALT who says she helps children like him. But my local NHS trust say they can't help him, as they don't work with children with social communication difficulties. Through an FOI I received information that in fact they were treating a number of children with social communication difficulties only, but they have said this was in fact a clerical error.

As part of his CAF, I requested a SALT assessment but the SALT only spent 20 mins with him and discharged him. I repeated the request through my GP but the SALT would not carry out another assessment. Apparently ds would need someone with him full-time to be helped, and the school SALT only visits once a term! They say it's the school's responsibility.

Am I wasting my time chasing SALT help, should I be looking at something else? The school does not appear to be capable of helping, only offering a 10 mins of play with a "friend" a week to help with social skills.

Not sure. Am in similar boat with DS1 (4.4) who was dx ASD in November. He was supposed to get SALT, but it hasn't materialised. Also am chasing up Physio / OT for poor balance. At the ADOS results meeting we got a leaflet. And that was that.

I have made official complaint to NHS about their failure to provide treatment. Dunno how far it'll get me, but I know they have SALTs as he has seen about 5 or 6 so far - so if GPs and Paeds (separate referrals at different times) can make referrals then it follows that there must be some service to refer to. I think?!?!

PF thanks for replying. It's all so hard, isn't it, esp when you know when your dc could be helped, there are people qualified to do so, and for whatever reason, prob financial, don't .

DS has had about 5 or 6 SALTs in total, first via a GP referral (so there must be a service?) then later on as assessment via Dev Paed, culminating in HF ASD diagnosis.

If they have money to chuck about on assessments then why don't they have money for treatments? DS was assessed virtually weekly (during term time) for his issues by various professionals. Now I am met with deathly silence. SALT isn't thru the school here (Scotland) it's via NHS.

If he wasn't ASD I wonder... would he get SALT? I feel he's been written off sadly. His Preschool Visitor says there definitely is SALT, he was meant to have group therapy (which is cheaper isn't it?) during summer holidays, but it hasn't materialised yet.

If they can't give therapy, why can't they just be upfront about it? I'd accept that, I like honesty and transparency. Instead I am just getting blanks from everyone. Why do we have to do all the running to source medical care? I am currently pg, and I get appointments sent out for everything as a matter of course for DS3 - nothing for DS1 tho.

Such indiscrepancy...

You can apply for a £500 grant here www.familyfund.org.uk/ incidentally. I am told I shouldn't have to apply though, as this really is NHS stuff...
Hope this helps.

I think you have hit several nails on the head. It annoys me too when I look back on all the time wasting, the pointless assessments, the many roads to nowhere and nothing - why not just admit up front that the cupboard is empty for ASD children?

Could you afford a private SALT? I have pretty much assumed very early on that ds will only receive meaningfull therapy if we pay for it. We are managing at the moment but I worry what will happen if our financial situation gets anymore difficult.

I agree that so far it's been lots of meetings, assessments and reports but no one is actually DOING anything

It's NEVER a waste of time chasing help for your child - just be realistic about what you might achieve. I hate the way parents expectations are raised at all these initial assessments as it causes a lot of unneccessary anguish. I know it would have been far more helpful to me to have been told the truth about what help as really available years ago via the state system. .

The local salts may not have the expertise needed to help with asd issues. Many are really speech specialists with not much clue on language I think. I've won weekly sessions via tribunal but suspect it will have to be augmented a little with private asd expert salt advice as receptive language issues are often glossed over in nhs salt training. Hopefully if I approach the nhs salt with a little sensitivity she'll take it in the spirit it's meant and not get huffy.

Our pct has only on OT with sensory expertise and so service is not good even at the assessment level as she's just drowning in cases. So even when the expertise is there doesn't mean you'll get help iyswim. DS has been waiting on his complete assessment report for over 6 months and not even the lea's legal bod could get it out of the ot team. (He waited 2.5 years for the OT assessment in the first place btw).

Chase ALL sources of help from charities like family fund and the cauldwell childrens charity or the bankers fund to DLA to the NHS/statementing process. I'm still in shock at recently winning weekly SALT sessions via tribunal for my son after a 3 year fight. I found a charity to help with the cahms stuff my son needed this year and am applying this holiday to cauldwell for help with the OT stuff my lad needs.

Cats - I'm sick to the back teeth with meetings about meetings and pointless "reviews" too. Chatting over a cuppa and shuffling bits of paper does not qualify as "help and support" in my book. It does however annoy the hell out of employers if you are cheeky enough to work while trying to raise an asd child.

Thank you for the replies, I will carry on trying to get help for ds. If nothing, it will hopefully create a meaningful paper trail if I go for a statutory assessment. I detect some bitterrness and who can blame you, I didn't even know to ask for these assessments with my dd, who completely crashed at secondary school. I went through tribunal and she now has a placement at an independent school where all these therapies are timetabled .

willow your comment about the pot being empty for ASD children is so right

I have had a similar problem with S&LT and chasing provision is something I have become sadly too used to.

However, I have also learnt that you can chase for provision only to find that you would rather have these people out of your child's life because they don't know what to do and the level of provision is poor.

People who don't work with children with ASD are not going to suddenly know what to do because they are compelled to be involved.

You can get vouchers from Cerebra vouchers - see here and it might be worth seeing if you can get them and instruct someone who knows what they're doing

AT Thank you. Going to have a look at Cerebra now.

Unfortunately, most state sector s/lt is ultimately pointless, due to a combination of bureaucracy, a focus on 'contact's as opposed to concrete outcomes and the sheer weight of children referred to the service (most of them unneccessaily by over zealous HVs).

People fight for s/lt but the next hurdle then (assuming people aren't exhausted by this stage) is the issue of whether the s/lt they get is of any real benefit.

Parkinson's Laws, sum up the situation quite well

Parkinson's First Law: Work expands to fill the time available.
Parkinson's Second Law: Expenditures rise to meet income.
Parkinson's Third Law: Expansion means complexity; and complexity decay.
Parkinson's Fourth Law: The number of people in any working group tends to increase regardless of the amount of work to be done.
Parkinson's Fifth Law: If there is a way to delay an important decision the good bureaucracy, public or private, will find it.
Parkinson's Law of Sience: The progress of science varies inversely with the number of journals published.
Parkinson's Law of Delay: Delay is the deadliest form of denial.
Parkinson's Law of Data: Data expands to fill the space available.
Parkinson's Law of Meetings: The time spent in a meeting on an item is inversely propotional to its value (up to a limit).
Parkinson's Law of 1000: An enterprise employing more than 1000 people becomes a self-perpetuating empire, creating so much internal work that it no longer needs any contact with the outside world.

I speak as an s/lt and as the parent of a child with communication difficulties. I choose to have as little as possible to do with the 'helping professions' as I can. I do/arrange it all myself but I have knowledge, energy, discipline and orgnaisational skills to a degree that most othewr people don't (and nor shoudl they be expected to).

It is all a mess-a huge 'special educational needs' industry which costs millions, emplys thousands and most emphatically does not achieve its purported aim.

My words will be of little comfort to you but it seems as if you have an accurate assessment of the situation already.

Having said that,. there is something very odd indeed about this part of your post, assuming this is really what they told you.

'But my local NHS trust say they can't help him, as they don't work with children with social communication difficulties. Through an FOI I received information that in fact they were treating a number of children with social communication difficulties only, but they have said this was in fact a clerical error. '

Thanks, Moondog, I value your input. The part you quoted is completely true. I made the FOI request as the school SALT told me the local trust did not treat children with SCD only, contrary to what a source who worked there told me. The FOI did indeed confirm my source's information but when I spoke to the school SALT, she told me this was down to a clerical error. She referred me to the Head of Service who confirmed they did not treat children with SCD only. I have requested a copy of their care pathway.

Sorry, my answer probably wasn't much help.
It's all a big mess and I am utterly disillusioned with it and feel great pity for parents who are fobbed off and messed around with.
As you say, probably better just to be honest with people from the start.

"It is all a mess-a huge 'special educational needs' industry which costs millions, emplys thousands and most emphatically does not achieve its purported aim."

I think I will have a T shirt made with that printed on it !

Do one for me too!
I'm currently feeling about as demoralised as is humanly possible with the whole damned thing.

We sound similar, DS has been signed off SALT and OT because he apparently meets age-appropriate thresholds now. I would differ, and it's all around the social communication - in fact, that is our dx, not ASD.

If you can afford/get a grant for private SALT you can do a lot yourself once you've been pointed in the right direction - which tbh is often all the NHS SALTs do anyway.

The other thing to look at is ABA, particularly if you can find someone who has experience in HF / SCD. We're doing ABA just now and it's more holistic (that word makes my teeth itch but can't think of a better one) so it's about developing a strategy for the entire situation, rather than just focusing on the speech/language element of it. We've been focusing on behavioural stuff, then we have a school transition, but our block after that will be social interactions.

The reason we've gone for ABA is just the paucity of ambition for DS in his current school. I mean, they're lovely, they are great with him, but 2 x 20 mins 'talking groups' per week (as long as the CA isn't off) talking about a bear and taking turns, with no real, quantifiable, targets or outcomes - nah, I want more than that.

Moondog if you don't mind me asking (sorry to hijack) what role can an I dependant salt play in providing meaningfully therapy for a child with ASD? De has been seeing I dependant salt for a year for speech delay(with positive results) but has only just received ASD diagnosis. Other than improving his speech and understanding will there be any merit in continuing this type of therapy to help overcome over aspects of communication and social skills that may be affected by his ASD? Sorry if that doesn't make much sense. We only got the diagnosis on Monday so am a bit all over the place trying to understand the best way forward

Cats good question, how can a SALT actually help with SCD? Would the SALT need to be there "all day" to make any difference, according to my school SALT?

WF I'm interested in what you say about ABA; the thing about my ds is he has always needed tasks broken down into little steps, then each of those steps taught to him, one at a time until he puts them all together into the whole task. Eg cleaning teeth:

1. Put toothpaste on toothbrush.
2. Clean top row of teeth. Remember left and right.
3. Clean bottom row, remember LR.
4. Stop cleaning (very important, has been known to clean for an hour if not reminded to stop!)
5. Spit out in sink (sorry)
6. Fill beaker with water.
7. Rinse.
8. Run toothbrush under water to clean.
9. Replace toothbrush in beaker.

10. Dry face with towel

He can only remember 2/3 steps at a time, but over time he has learned all the steps so needs little prompting. This is only one example, I have had to do something similar with things like unwrapping and eating a chocolate bar!

I know very little about ABA, is there a good reference source that anyone can point me to? I have a feeling that at the end of the day, it's all going to be down to me .

Currently our salt is working on attention and listening skills, turn taking, responding to adult led activities. Ds struggles massively in this area which in turn has delayed his speech and understanding. I can understand how these activities are currently the way forward for ds but am curious to know where the salt will go from there?

So much to learn!

Is it just me, or is this just one vast empty process of assessing, note taking, referring elsewhere for further assessment / note taking, and then 6 months later reviewing a large collection of notes.

I am also waiting for SALT input. I hope DS1 doesn't die of old age first....

If the pot is empty for ASD children, but other, NT, kids get SALT - is that discrimination?

Does the trick lie in getting a GP referral for SALT rather than a Paed who will shuffle more papers and do nothing?

Just a thought...

GP referred us still took six months to see salt, ds didn't have his diagnosis at this point, still told he wouldn't get any therapy despite a 2 year speech delay but they will review his progress in six months and I can have another lovely letter telling me where his speech is at. (still delayed Probably).

If they can't deliver SALTS due to cost then why bother wasting money employing them to do fuck all? WTF?

To be fair, I did get a photocopy of a leaflet from one SALT

Peace I'd start by doing a thread search on here, that's where I got most of my information and there's also some good info on the NAS site. ABA does tend to split the MN massive though, but I've found it very useful.

Just reading your other post, there's also a Hanen course and book that may be useful to you? I did a course called More than Words, which was ran by a SALT but was for parents and I found it invaluable. The 'run a course, teach the parents then leave them to it' approach hopefully means Hanen courses will still be available!

Finally - no SALT is 'there all day'. That just doesn't happen. Your child may or may not need 1:1 support, but it would never be from a SALT. A SALT may be involved in training a support person (she says hopefully) or for setting out strategies which are practised in small groups or individual sessions, but they don't do 1:1 support.

Do you think your child needs 1:1?