Why is Speech and Language delay in ASD children treated different to SLD children?

[blueShark]

In desperation to find different/supplementary way to help my DS develop his speech and language further (with the lack of SALT), I got in touch with a friend who works in ICAN unit.

DS (4) was initially treated with SLD for a while until given ASD with speech and language as a primary issue this summer. At the beginning the SALT sessions seemed to be very frequent until he was dx with ASD and although in special unit no sign of SALT to do an assessment nor provide the visits every 2 weeks as per statement (which is another battle I now and school SENCO and I are taking action).

The friend that teaches at the ICAN unit is telling me she cannot give me any specific tips since her expertise is not ASD and speech delay in ASD children is treated different.

She also told me that kids that are in her unit are progressing beautifully with speech but when given ASD dx are moved to different unit. Also the SALTs are busier to deal with SLD children rather than ASD.

Anyone that is a bit more tuned in to explain why? Do I have to search for a private SALT specialising in ASD? Current SALT still recommends attention and listening games (turn taking, object passing etc) but DS started combining sentences with I want, I see, Give me etc and using them in context so what is wrong in asking for a guidance to extend the language whilst I still do the attention and listening exercise which I think he also benefits from?

I have found some excellent tips from you people here on MN which have been a great help and also read both Hanen books and any book I find recommended here.

Thanks for reading and sorry for the long post.

I dearly wish I was going to Maggie Johnson's study day in Bristol which:

"...illustrates that often children with diagnoses of language disorder, autistic spectrum disorder, dyslexia and dyspraxia appear to have as much in common as they do distinguishing characteristics...."
(Afasic's courses/conferences)

Someone who sees the connection, the continuum, would be interesting to listen to - especially with regards to appropriate assessments/support.

9-5, your post is fantastic. This bit so resonates with me.

This bit especially

'Really, I don't get paid to do therapy at all. I get paid to assess children within a very tight time frame, keep waiting lists down and put some cut and paste suggestions at the end of a report... and more or less, that is what therapists like me do (usually working in their own time to make up for general NHS inefficiencies that slow things down further like computers that never work!).'
It's what I inwardly rail against but of course as a public secotr employee i have to do what is expected of me.
Some SALTs are also quite happy i think to have as little as possible to do with the nitty gritty. I've known a few in my time who seem to do anything but actual therapy.

As an independedn,t you can cut out a lot of this stuff but what you lose is easy access to schools and multi-disciplinary meetings and, as Nixon said, instead of being in the tent pissing out, you are outside the tent, oissing in.

'However, the annual cost per child in this unit (with 2-3 sessions of therapy a week and assistants etc is about £7K a year, so still much less than many ABA programmes).'

Hmm. Whilst I agree with you that this is how things are. I don't think it HAS to be this way. £7k could go a long way on an ABA programme if it was standard, integrated and the benefits of the longer-term were factored in.

ABA DOES cost a lot and this is why LA's rally against it. But it ONLY costs a lot because LA's rally against it!

Also, it costs quite a bit TO rally against it, as well as the expense of the longer term non-ABA.

MY LA are idiotic enough to have a 'hit list' of ABA people going to tribunal for ABA over the next year. What the parents have asked for that they didn't win is totalling up as 'savings' and turned into a performance indicator

I know there are lazy people in every profession, but I think the reason that a lot of SALTs don't want to do therapy is because they don't get to do a lot of it, so their confidence levels and ability in this area are low as a result. I have certainly had sessions where I have chosen a particular therapy approach and found myself absolutely flailing and cringing when it didn't come off in a session, and I have had a lot more instructional training than most.

Also, if you do clinic-based therapy (as we have done in my trust FOR YEARS - we were VERY slow to move to a consultative model and still haven't fully), you realise that the infrequency of it renders it practically futile. In our trust, working with a largely multilingual disadvantaged population/white urban underclass, the majority of even very, very basic therapy (I am thinking of early interaction approaches, word level stuff etc) requires an awful lot of adaptation and handholding that just doesn't happen in the timeframe. It is very disheartening. I would love to have parents who wanted to discuss research and to challenge my thinking, discuss it as equals.. but in reality, parents like these come around once in a blue moon.

There are also two types of SLT in my experience: the believers and the sceptics. The believers have convinced themselves that it "works", sceptics tend to feel terribly disheartened by the whole system and wonder what the point it. In terms of the therapists I know, I know very few believers (truth be told). As public sector professionals, we all need to act like believers but we're often not. I wonder sometimes if the experiences parents have of therapists being "flustered" come about because the therapist themselves questions the service delivery model/what they are saying but is bound to pretend to believe it. Classic cognitive dissonance. I am sure I have seemed "defensive" sometimes but the reality is that if I was completely open about my thoughts with my cients, I would most likely lose my job.

That's a bit depressing!

In terms of being independent, I am very much afraid of being on the outside of the tent pissing in. Also, on a completely personal level, I can't imagine being "out on my own" with no colleagues to call at the end of the day if it was all going pear-shaped, no one to keep me informed of all the boring changes in legislation that I really need to know. I would miss being part of a team. We spend a lot of time discussing service delivery and how to change it in our trust, trying to work out the best way possible to do things etc.. if I were independent I would feel one-step removed from being able to facilitate any change. I've settled for a middle ground of being in a specialist setting that affords me more time to do my job (but still not enough). There is still woefully little planning time and of course, working as a professional in a school, there are all sorts of levels of politics and bureaucracy to wade through on top of those in an NHS setting.

I think I might have forgotten how far I've come actually. I look at that SALT session I was able to observe just last week and compare it to a session I had over a year ago before I started to be very noisy and it is quite startling to think about the difference.

I have to give my new SLT the credit for that. She's a bit all over the place but she does appear to be more open to parents (or just me I don't know) suggestions and input. She has given me an open invitation to observe any session without notice and has agreed to fill in a short form (it IS short I promise) that says the date, what she worked on, as suggestion for the TA, a suggestion for the parents and the date of the next sessions. She agreed to try the form but if it was too much she'd simply photo copy her case notes instead.

Really, I'm hopeful.

When I think back to the first SALT. I'm not sure I could even apply any of your difficulties of the system to her. She was just lazy and crap and said things like ds can't do things because he has autism and introduced PECS when he was sentence verbal, just so she could once learned, stick him into group therapy where they were all using PECS so she could get rid of the indvidual sessions.

Another great post 9-5 that exactly reflects my view.
I don't want to be outside the tent pissing in either so I will stay within the system and do what little I can on my own to change things. Despite its faults, I liek the hurly burly off the office and the school visits and having a laugh in the classroom and seeing the Christmas concerts. Actually, I really love most of it, for all its faults. I look forward to going to work every day of my life.

I think a lot of people in the field of SN don't actually think these kids can improve thier skills (they wouldn't say so) and deliver ineffective intervention knowing quite well it will do nothing but it gets another box ticked.

I can't live like that.

In my darker moments I also consider the possibility of a more sinisiter movement where 'SN' is perpetuated because it keeps a lot of people busy. It's also big business. Look at all thr glossy brochures full of extortionate resources. My pet hate is the dreaded sensory room. Costs £££££ and is little more than an escape facility for kids and staff.

9-5 - what you have said exactly describes the niggling impression I have got from my experience of dds SLTs.
The comment you made about parents discussing research & challenging thinking has made me realise that I have to do that. I have not done so because I thought to myself that this is not my area of expertise, so I kept my thoughts and personal research to myself. But I've also realised that dds language difficulties are also not these SLTs area of expertise either.
From now on I'm stepping forward because dd IS my area of expertise and I will in future voice my opinions.
So thanks for that.

I just wrote an uber-long response and lost it!

I don't agree that people don't act because it suits them. They act as they do due to lack of appropriate training (which some of them don't even realise) and/or resource constraints.

I think that the financial aspect applies to all SN provision. I certainly have some ethical qualms about the cost of ABA provision (despite its efficacy). The cost of a programme in our area is £50K a year. That is is prohibitive in terms of the public purse strings. I see that.

The children I worked with on ABA programmes are now of a similar age to my secondary students with autism who have never had ABA. All were quite challenging and with highly disordered language and communication profiles as young children (e.g. not Asperger type profiles). They have had very different educational experiences and expectations etc.

There are differences in "outcome" at 15/16, definitely. The students on ABA programmes have very good basic literacy and numeracy skills and while some of those in the m/s system do too, it is more hit and miss. Self-help skills are better among the ABA group etc.. and I'd go so far as to say that vocabulary and language levels are better.

However, all of them still have substantial challenges related to their autism. The kids I worked most with on ABA programmes would not seem that different to my students in secondary.. and some of my students in secondary are what you might call "indistinguishable from their peers". Three in particular, I think, would be very difficult for a non-specialist to "spot" and one of them had a very "classic" presentation of autism as a preschooler (with dyspraxia, too!).

If my son had autism, I would definitely choose ABA and fight for it with all my might as evidence-based practice. However, I would want that autism to be taken into consideration e.g. I wouldn't want him to be expected to do things that were highly stressful or beyond his current skills level just because no one understood it was different for him. Expectations are a funny thing in this regard. With the right support and structures in place, I would expect the sun, moon and stars.. but I wouldn't want him to have to just fit himself in with the expectations of the setting as though it weren't challenging for him and be labelled "naughty" and troublesome.

It's a tricky thing, isn't it? The public services cannot provide the level of individualisation and support that an ABA programme can because of financial constraints. Realistically, most provision in the public system does not involve "big money" if you consider a sum like £460 a year for "provision". That's paltry. There are business men who spend more than that for one night's accommodation on expenses! Moondog, do you actually know SLTs who you think would rather their clients just carried on in the system for years to keep them in a job? I think most professionals would give their eye teeth to partake in interventions that brought about real change. We dream of it even when we are jaded.

I do see that, realistically, the public purse strings just don't cover a £50K a year provision.. but I wonder why there isn't scope for more corporate sponsorship of programmes that work, like in the States. I suppose this is what David C wants with the Big Society? Money is definitely needed to plug gaps, but at present that cost is being met by parents which is just wrong. Society should take more responsibility rather than assuming that paying taxes is all they have to do as "their bit".

I will return later and write about what the expectation is in terms of what SLT's can do but here is what CQ3 says:

Speech and language therapy value
To contribute to the diagnosis of ASD as a key member of the MDT.
For children, the core team consists of a paediatrician/psychiatrist,
clinical psychologist and an SLT. For adults, the core team consists of
a psychiatrist, clinical psychologist and SLT.

• To provide individuals with a means to make free choices, express

their feelings, to learn, and to increase their independence.

• To provide an environment which maximizes opportunities forindividuals to develop their receptive and expressive communication

skills.

• To provide carers and educators with the means to support

individuals. - This includes ensuring that carers and educators are able to use appropriate systems and levels of communication when interacting with individuals, eg use of AAC, communication aids, communication methods such as PECS, comic strip conversations and social stories, narrative therapy and systems to support routine and structure involving an appropriate level of reference (eg objects, photos, pictures, gesture, symbols, etc).

As you can see, it's all about environmental support and AAC.. I would question how well we "provide carers and educators with the means to support individuals" but more on that later.. I think it reflects the fact that they assume that things like visual supports/EarlyBird do when they are not enough.

Got to go now!

I do agree about the "comfortable nests". I also think you are onto something when you say that people don't realise that they are crap so keep repeating the cycle. The underlying belief they are great is a HUGE issue. I know some SLTs like this but I suppose it is a bit different - we all went into the profession assuming we would be doing oodles of 1:1 and can get frustrated at the fact the job is so different to what we might have imagined.. autism adviory people chose to gravitate towards a consultative role to get away from classroom teaching, usually. Different motivations there I think..

In terms of the strategy, I see what you are saying is that this would be overwhelming and a sensory overload for your ds. It seems pretty inconsistent to me and not really appropriate for an autism advisory service. I wonder do they think that this is "challenging" him and this is what you want? Do they have a fundamental lack of understanding about what ABA involves e.g. think that you want him to be able to do is to do it independently with recourse to support only if he fails? Essentially, it's like badly construed backward chaining, isn't it? It isn't a strategy really, more of a "throw everything you can at the problem" which might work better for a student with a different type of difficulty e.g. a child with S&L delay might get quite a bit of language info out of these multiple presentations - they might take a bit of info from each and put them together to build a more comprehensive picture. This, of course, is precisely the opposite of what a child with autism is likely to do.

They will see it as giving him every opportunity to achieve vs every opportunity to fail.. which is why I wonder do they think it's a strategy they think will please you? Not defending that, it's shoddy.. just wondering aloud?

The lack of openness to change is crazy. It frustrates some staff as well as parents. The issues I have with ABA being unrealistic in the current system aren't meant to imply acceptance of the status quo. I'd like to see a way forward for improved provision and accountability all around.. but adequately resourced and financially feasible. I also know that some kids really do benefit from strategies that an ABA person would balk at e.g. I've found some of the "using a calm, consistent voice" and being very precise in my language and backing things up with visuals work well for some students as a conduit to teaching other skills.

I have been trying to grapple with these questions in my mind for 10 years this year.. and I tend to swing more towards ABA or more towards my SLT training periodically and then back again. What I really want is a hybrid.. not an "eclectic" approach, but one that merges a high emphasis on skills with empathy and understanding of what it must be like to be autistic vs viewing behaviours as "controlling" or "manipulative" when adults with autism tell us they are really intense states of distress.

You are dead right in those circumstances of course.

I suppose I must remember that "ABA" is used to describe a wide range of practices and in the same way that some here have had woeful experiences of SLT which make them question its validity, I had (some) bad experiences of ABA.

If you take it as being merely Applied Analysis of Behaviour, then we should all be bloody well doing that, as you say - how can you teach without analysing behaviour and applying that knowledge to informing your practice? That I have no issue with, and that is why I am very keen to do PT in my setting and get it up and running. We need to be data-driven and accountable, that's a minimum. We need to strive to improve practices and take on new info etc.

The types of things I object to are those that disregard signs of distress on the basis that we can't "know" internal experience e.g. rigid and non-functional "compliance" programmes or "bootcamp" to "break in" kids etc, involving restraining a child to ensure they carry out some bizarre punishment for "not complying" with some non-functional task e.g. being forced to match and fold socks because they wouldn't recite the capital cities of Europe. These are all things I experienced "on my travels" and they have coloured and prejudiced me as much as some of the incompetence some of you have experienced may colour and prejudice perceptions of SLT.

In the end of the day, these dodgy practices are not SLT or ABA, they are opposite ends of a spectrum of incompetence and arrogance - from "do nothing in case it may be damaging" to "do something even if it is damaging."

I really do believe in behavioural approaches.. I just can't throw the baby out with the bathwater and dismiss models of processing or first-hand accounts of the experience of autism. That's where I find myself at this point in my career, I guess. I still think there is so much to learn about the spectrum.

Absolutely.. but again, there are differences of terminology here.

In one ABA programme I did, this would go a little bit more like this:

"[Name] go and line up by the door" (no response).
"[Name] go and line up by the door" (no response).
"[Name] go and line up by the door" (no response) -> remove child to corner and throw out a bunch of bricks and hand-over-hand prompt them to put bricks back in box. If there is any resistance, throw bricks back out again. If it proceeds to total meltdown, ensure child stays in the area and when they have calmed slightly, hand-over-hand prompt them to put bricks back in the box. Do not, under any circumstance, allow them to go elsewhere until all bricks are in the box. When they are "ready to be compliant", reissue the instruction. If they do not comply, repeat above.

Pretty stressful. in terms of success/expense. This is my point, really. I have no issue with what you suggest. I do have an issue with "programmes" like the above. In all honesty, the programme I describe above would not have been carried out in school and I know the team leader advised that this strategy not be carried out at school in view of other teachers but only at home or "in private" .

As I said, it has prejudiced me. I think ABA is hugely powerful technology and it has to be judiciously applied. That doesn't mean I support haphazard, ill-thought out and unscientific approaches: merely that I am not a blind advocate of ABA any more than I am of SLT or any other approach. No method, no guru, no teacher and all of that..

Incidentally, I am very careful about what I say about ABA to colleagues with no experience of it, because I don't think sharing the horror stories is fair. I have also advised several parents to look into it and have put a few in touch with a parent who does ABA in our area. So I am not "anti-ABA". Just cautious about viewing it as "the answer", even with such good evidence to back it up.

All of these things I describe I saw with my own eyes in 2004-2005 from a reputable international provider with a good reputation. At the time, I was finishing my SLT training and had - prior to these programmes being put in place - been seriously considering doing an ABA-SLT split e.g. looking for a part-time SLT job and a part-time ABA job. When these programmes came on-stream, I walked away from one family and told another that I would only continue to work with their son if they were happy to allow me to do so without taking part in these "response cost" programmes which effectively did me out of a job, as I then only took him out on trips at the weekend. Incidentally, the team leader was doing her MSc on "response cost" programmes at the time so all the programmes in the area involved these components .

I am pleased to hear that this isn't something that went on to become common practice and as I said, I always wondered if it was peculiar to this professional. However, it did give me a lot of cause to think twice about just assuming something was great because the whole profession had good research behind it. I am a huge fan of positive behavioural approaches and I do appreciate the need to set boundaries which will sometimes cause distress etc.. but this type of stuff just never sat well with me.
I am not sure it would sit well with many people who work with kids on the spectrum, regardless of training or perspective.

Cross-posted with you there. I have posted before about this here, and I am careful about sharing it because I don't think it is duly representative of ABA at all.

As I said, really I see it as: "with great power comes great responsibility". Ethics is obviously a huge part of behavioural training, and rightly so. I just think you have to keep your eyes open and your wits about you in this game and not just assume that x is brilliant or y is rubbish because of what you hear or read etc.

More BCBA's needed too, and regulation for ABA professionals out there at local levels, not just allowing people to sell themselves as experts because they are under the umbrella of one they only see once in a blue moon.

I suppose in terms of my 14/15 year olds, the thing to take away from it from your point of view is not that ABA won't make a huge difference in the long-term equation, but that there is far more spontaneous development than I think many people working with kids with autism like to pretend. I have been saying this to Stark, recently.. I suspect that there are stages in the development of people with autism that appear more problematic than they (in fact) are. I hope that research is able to work this out more precisely as time goes on.
I think this is really heartening, regardless of what is happening with a child's educational programme.. it means that the effort that you make now will combine with their natural development trajectory in a positive way, which is fantastic! Rather than a negative, see it is as something to reassure on those days when it seems that there's so much to target and not enough time. Or when that classic "two steps forward, one step back" lull in development happens before a leap.

In terms of nearly every single self-help skill, the majority of concrete language skills (and some abstract ones), academic skills, concepts etc, I know ABA is the best approach for children with autism. I agree that an "eclectic" approach is not a viable "second best" and is often ill-informed and poorly evidenced. Shoddy, really.

When it comes to the more nebulous stuff, I think there is still a lot we need to learn about how social skills "work": about the underlying stuff of language pragmatics that is so hard to define and operationalise. I think ABA offers some pretty powerful social skills approaches but as you say, the work isn't done. Cognitive-behavioural approaches are the key here, IMO. So there needs to be a willingness on the part of HCPs/LEAs etc to embrace behavioural technology, and on the part of some behaviourists to see that there is more than operationally defined behaviour. In both instances, you are asking people to sometimes be their opposite, which can be challenging for all. Team work can be a bitch when people won?t open their eyes and their minds to what works just because it doesn?t fit in with their original training.

I suppose when you say that you are angry at having to justify ABA, sometimes I feel tired that I have to explain that just because SLTs are poorly trained and utilised in this country etc doesn't mean that knowing about language development is an entirely pointless thing, that there is no value in joint working or that some of the programmes that seem so non-functional are entirely useless.

To give you an idea of the role I think SLT should be taking in ABA programmes, I?ll have to make reference to my own type of work and hope it makes sense to you with a younger kid. I have recently been sent a list of 20 words that have been chosen by Year 7 teachers as key to curriculum understanding for my Year 7 students with language disorders (not ASD). They are:

Verb
Total
Height
Nucleus
Century
Fiction
Between
Evidence
Population
Conversation
Vertical
Soluable
emphasis
foetus
opinion
calculate
habitat
disaster
data
vertebrate

One look at this vocabulary set and immediately, I can see that there are many, many more words that need to be taught to allow these to be understood and used. So many subskills.. With the kids I work with there are also all sorts of speech and literacy aims related to these words. There all sorts of analyses that need to be done to make these "learnable" for the specific students who will be asked to learn them. I look at them and my heart says: ?load of twaddle? but my head knows that if my kids are to perform in class, to be able to understand and participate and put their hand up and fill in the homework etc that they need to know these words and all they imply. It?s not within my sphere of influence to determine the National Curriculum, so I must work within this framework and ensure that these are targeted.

So those things that can be done and seen as ?mastered? in an ABA programme need to continue e.g. just because you?ve done a load of programmes on receptive labels, naming, sentence construction, classifying and sorting etc doesn?t mean you can see them as ?done?. It just needs to get harder and harder. I think an SLT could be quite valuable in selecting words and suggesting all the knowledge needed to ground these in memory.. which could then be taught behaviourally in nice, easy programmes that any LSA would do and take data on. In the list above, I would ditch the word ?emphasis? for example. Pointless, low-yield word that won?t make a functional difference. Vertebrate, on the other hand, is crucial as it is a key concept in Year 7 science.

If I was a parent doing an ABA programme and had a school SALT, I?d be asking them to help with finding out curriculum key words and giving strategies to teach these. For my students, the above words will need to be targeted on phonological and semantic levels ? so I want them to be able to see, segment and say them (vert-tuh-brate), read them, write them, classify them, sort them (vertebrates/invertebrates), label examples, sort examples, say as many vertebrates as they can in a minute, understand and tell me their features and what they can do etc etc, draw a picture, label a diagram, put them in a sentence, fill in a cloze definition etc. All very amenable to ABA techniques but if I wrote all this down, you might think I was being eclectic. Really, I?m not. I?m using what I know about word ?storage and retrieval and targeting words that will be high-frequency in the classroom. Once you have the basics of language in place and your child is comfortably communicating at sentence level with appropriate conjunctions/prepositions etc, targeting vocabulary (both functional and curricular) is the next big task. In secondary school alone, it?s estimated that the average student will be exposed to tens of thousands of words which they will mostly have to deduct via inference from a spoken speech stream. Giving them the tools to do this (which also might involve trying to work out meaning from context, answer specific types of questions etc) is a huge task? so this is my plea for retaining some sort of SLT stuff in even highly functioning kids programmes (where they will often learn all this by osmosis for topics that interest them and blithely ignore topics that don?t ). With ABA drill work/PT, you can easily target this kind of thing in 30 minutes to an hour a day and do all the other stuff the rest of the time..

In terms of social skills, there is a good explanation of what I would like to see here

It shouldn?t be a ?my way or the highway? kind of equation. The hybridisation I referred to in earlier posts is really seeking a recognition that there are times that you need to teach things that don?t seem that obviously important, in order to cater for the long-term. I really admire the immediacy of ABA programmes responsiveness to ongoing issues and most of the curriculum, but would like to see these types of suggestions incorporated even when they go against what some team members believe. I hope that explains my position more comprehensively!

Starlight thank you so much for this:

"The autism advisory service could have done the same but paid lip service, miss out boxes and generally frustrate me, but their arrogance is such that they have point blank refused to do anything other than their own format which is basically a 'report' that is just a stream of consciousness of the Autism outreach person"

Such validation. The ASD-trained SALT's initial and only "report" is also like this (PECS plainly not suitable for DS so she is washing her hands of him monitoring him apparently. No analysis at all. My DD aged ten could write them.

I wouldn't even mind but the Family Support Worker's observations always seem to completely gloss over the extreme behaviour DS exhibits so they aren't even any use for the DLA appeal.

Sorry to interrupt the thread but I had to mention it because over the last few months I've been wondering if I being too demanding in my expectations