NHS Speech Therapy for ASD

[Mannah]

Our 2.5 years old DD has been having ABA for the past 6 months. We have just completed the diagnostic assessment process, and expect to have the ASD label in the very near future.

The SALT who assessed our child for suitability for speech therapy has advised that it is not indicated at this point, despite the fact that she is entirely non-verbal. We were told that we were doing everything that SALT would suggest already in terms of language promotion - essentially we are getting no help because she is having ABA.

Naturally we are disillusioned and furious, and will ask the paediatrician to arrange a second opinion.

Has anybody out there been in a similar boat but had positive experience with NHS speech therapists for their ASD child? We would like to be able to provide examples of techniques they could potentially employ in response to their refusal to help. Can anybody recommend any private speech therapists and/or courses which may help? We can't afford it, but will have to scratch up the resources somehow it seems..

Honestly, you will already be doing much more than NHS SALT is likely to provide by doing ABA. DS does ABA he is nearly 6 and now at about 4 key word sentences having had 2 words at 2.5. You could fight for SALT but it would just be 'advice and support' that is less qualified that what you already have. We have had NHS SALT throughout and they have yet to come up with a single idea we have not had already. Our ABA staff are so much more experienced than them, in 3 years I have not even met a NHS SALT who can engage my child - they are like rabbits in the headlights when it comes to children with autism, they haven't got a clue. Apparently 1 day of their training covers autism.
I would actually prefer not to have any contact with our NHS SALT dept (they are anti ABA and a PITA and went against us at tribunal), but the Tribunal kept them on the statement.
You could end up with someone who works against you / ABA or that the LA use as a witness against you if you ask for ABA at tribunal. Ours acted as LA spies.
While your instincts that it is wrong your child is being denied help are justified, I have learnt to pick my battles and only fight for stuff which actually has some value. My hunch is that if you succeeded in getting NHS SALT you would wonder why you bothered.
I trust our ABA team to tell us if and when they need SALT input. They do have private SALT they bring in sometimes but we have not reached the point where ABA is asking for extra advice.
If you do want to get a SALT opinion then Cerebra (charity) may still offer private SALT vouchers - it may be worth buying in private SALT with autism expertise and who is pro ABA to work with your ABA staff - it may give you reassurance whether your ABA team has it covered.
Are you seeing progress with ABA in areas other than speech?
Are you happy with the ABA team?

The ONLY benefit of getting NHS speech therapy for a child with ASD is because if you can put up with it for 6 months or so and it is on the statement, you can request that you get the provision with direct payments, and you can use that money to buy in someone that actually knows something.

It also raises the profile of your child in terms of complexity which is also good for evidence for a statement.

For these reasons I would try hard to get SALT involvement, even though it will be rubbish.

Well actually, LAs will probably fight hard against it (both getting it quantified in the statement and providing as DPs) but you're at least halfway up the mountain if it is there in writing.

Agnes also does make good points though. Having these professionals involved is a double-edged sword. They can claim that your child is suddenly 'cured' to prove both their effectiveness and lack of need when you ask for alternatives to them (happened to me when trying to get Independent SALT school instead of NHS SALT), and they have some credibility because there is a record of their contact with your child.

However, there is no way on earth we would have won the fight for a SALT school if ds had never had SALT iyswim.

We have learned nothing from our NHS SALT that we couldn't have picked up on websites such as 'teach me to talk' etc. Some interesting points above tho r.e direct payments. Do have a look at Cerebra-they kindly granted us a voucher that we used for private salt whilst waiting for the nhs.

Our NHS SALT (although DD has no diagnosis, just non-verbal at 2.5 and a 'bit odd' according to the speechie) have been basically useless. At the moment we're stuck doing PECS. DD has (off her own bat basically) started making 3 word sentences now at 3.3 but they're insisting we complete the PECS course before we move onto something like Colourful Semantics. I'm trying to be compliant, because I'm hoping that we'll get something a bit more useful eventually, and maybe an extra TA in DD's nursery class. SALT has been limited to one annoying woman insulting my parenting and being horrible about DD, and two really nice ladies trying to do PECS with DD, while she just reads the words off the cards, and corrects their spelling.

It depends on the SALT really. In our area, we had a team of SALTS, some of them were trained to implement PECS and had ASD training. We had to have an assessment with normal SALT who referred to ASD SLT. When we did get an appointment with her, she was good. she only saw us once a month and we were given help and advice to implement the strategies she proposed.

Because you are already doing ABA, I would echo what others have said that you are probably doing everything already what she is going to tell you, but it is useful to stay in the system.

The best thing we ever did was to see a very experienced SLT who was able to give us more useful advice to us in an hour than we had from NHS SLT over the course of months.

I should clarify the last paragraph that we saw that SLT privately.

Thanks everyone for your advise.
Agnes I do feel it is pointless to pursue speech therapy with the NHS as I dont believe the SLT that assessed my child thinks that my little girl is worth treating.

I am in shock that they can deny her and the SLT could so patronizing and rude to me. From the moment I said that I was doing ABA she became grumpy and dismissive. Kept dropping little on liners about bad ABA. She had made up her mind before I was even assessed. If I went to see a doctor who treated me this way I would demand and be entitle to a second opinion. However it seems with Speech therapy that can actually say you are not getting any treatment if you don't like it speak to PALs but you will still not get any treatment (It says this in the letter for my invitation for assessment)

I think my only hope is a private SLT who has some experience of ABA and hopefully some help from Cerebra.

I have just given up a good paying job to set up this programme for my child, I really didn't expect to be judged by the health professionals who are suppose to be helping me. I had better toughen up. It seems it will only get worse!

I would complain whatever you decide to do particularly if they have put those comments in writing.

Public bodies like the NHS cannot have 'blanket policies' which say they will not treat whole groups of children. They must consider each case individually.

I would echo what is said about SLT being a double edged sword.

It is not that easy to get DPs for statemented provision though. At present, this possibility is limited to pathfinder authorities under a pilot and most take the view that they will reject provision which costs more than their own.

Does anyone have any info on how to get DP's? Anything in writing I could keep in my back pocket for our upcoming annual review?

I have a cunning plan bubbling away in the back of my mind for OT & we are a pathfinder authority.

You may well find that you have no need for a private SALT either.

The main thrust of our ABA programme was developing speech and for the life of me I cannot see what a SALT could have added. I guess we were lucky in that ds doesn't have verbal dyspraxia, obviously that complicates things. But in our case (and this is obviously very usual in children with ASD) the key is to work on the desire to speak/ communicate. Something that was entirely absent in my son at first. At nearly 6 he has made huge strides (particularly re speech) but motivation to communicate anything but his needs/ wants will always be a challenge.

I still wake up in a cold sweat after nightmares re our NHS SALT. She was so appallingly ignorant about ASD, constantly telling me to pause and give him the chance to speak. Oh, not forgetting to keep the nursery rhymes coming. I found it all incredibly insulting tbh. I would have waited forever for him to ever utter a single word as he had no desire to whatsoever. He had to be very highly motivated, over many many hours, in order for the penny to drop that speaking was worthwhile.

Most insulting of all, when ds failed to chatter away in response to her bubble blowing, she concluded that he would likely never speak, and urged us to drop that notion completely and work only on pecs. If she could see him now! She was so violently anti-ABA it was almost comical. She had every ignorant and outdated prejudice that it was possible to have. And the day we told her about our home programme she refused to work with us again.

And this woman was and still is revered in our LEA as she has been in the job so long. She goes around the country giving talks on ASD!