Parents of children with ASD, Is ABA the answer?

[Slinkysista]

Hi everyone

Doing some research work for university on the pros and cons of ABA in the treatment of ASD.

Was wondering what the general mood was towards ABA amongst parents of children with ASD on this site. Amongst the parents I know personally and from what I have read there seems to be two very distinct camps those who can't praise it highly enough and those who think it is overrated and have ethical concerns about implementing an ABA program ( as in ABA is trying to change their child and is totally unaccepting of what some parents feel are their child's little personality quirks as the Son Rise program, for example, would).

Where do you stand?

No you can't, so the sad fact is that most of it is completely pointless.

9-5 you can't deny that many professionals are genuinely outraged when a parent questions what is on offer.

What I learnt to apply in my own work as a result of my own horrendous experience (which noone would believe if I related it here-which I won't) is this:

If people are pissed off, there is usually a very very good reason why and the least we can do is listen and try to resolve it.

I also learnt that my job is to serve the families i work for, not to make them meet our perception of what should be on offer. I am a public servant.

SWC, on the other hand, may I say that the average parent is not anything like the kind of people who post on MN and obviously go to huge lengths to seek out the best for their children.

The lack of engagement and interest most people take in their children's needs never ever fails to amaze me.
When I started working as a salt 15 years ago it literally took my breath away.

SWC, how did they react to that? Did they go and see him?

To be honest, moondog, we don't work in an area where many parents question provision.. so it's not something I've had to deal with a lot. On the rare occasions that it comes up (I can think of only two and neither of these involve kids on the spectrum), I always try to advocate for the parents' experience and strip away the professional egotism about what is/isn't on offer... but it hasn't been something I've had much cause to deal with as an SLT.

I think there are also many professionals who do strive very hard to improve, improve, improve.. even when it seems completely pointless. The school that employs me (via the NHS) work bloody hard to maximise their students' potential (in the context of a very deprived area with extremely poor parental engagement and literacy) but the director of inclusion is very aware that are a long way off where we need to be and is in no way clapping himself on the back for a good job done... even if the school has been rated outstanding etc.

There is a massive supply and demand issue. Comparing ABA with public sector services is not comparing like with like, let's be honest. I suppose I just don't believe that if ABA was offered as SALT is that it would necessarily be 100% better.. if all you could offer was 45 minutes once a half-term and the people offering that had no hands-on experience and you had to keep the same records/do the same mandatory training and see it and apply it with every possible imaginable condition.. in fact, it couldn't be, could it.. because then it wouldn't really be applied behavioural analysis, would it? SALT was once about a full assessment, isolating a target and working on that target.. the numbers are too high on caseloads to allow for quality work. Even where caseloads appear low, usually it is because of mechanisms built into the system that belie the true extent of need e.g. discharge with strategies. I suspect that the type of work done by SALT where there are 3 hourly sessions a week with a team etc is very, very different. You only have to look at the strategies and types of targets discussed in a book like "Language Disorders" (Rhea Paul) to see that lots of what we ignore here in the UK in SALT provision IS targeted elsewhere e.g. syntactic intervention at high school. Collaborative work in the US in schools consists of things like guest teaching and joint teaching with the teacher, not sending in a sheet that has meaningless phrases like "use simpler sentences and gesture".

I do understand what you are saying re: parents who are not interested, moondog and working - but it then mystifies me all the more as to why, when a parent comes along ho clearly has done some research, does know a bit about the subject, clearly knows their own child, etc - why on earth is this parent made to feel like an utter moron for even wanting their child to be educated?!

My dx experience was horrendous - and I am certain I was not the only one. Post dx, when services were supposed ot kick in, we were pushed form pillar to post, fobbed off from one department to another.

When we finally spat the dummy out and complained, we were given the Earlybird course (despite us knowing more than the course was going to teach us). When we threatened to give up that (it counted as dd1's SALT entitlement fgs, as a SALT was on the delivery team), we were given a reasonable SALT package (well, reasonable compared ot the sweet FA we had had before!) - dd1 saw the SALT once a week at home for 90 mins, and SALT went into pre-school once a fortnight to monitor her there.

But stil this amounted to FA for dd1, as the SALT was quite staggeringly hopeless, and only interested in pushing her own agenda, and slating ABA (and trying to prove that ABA was at the root of some of dd1's langugae issues ) - she certainly did not seem too interested in helping dd1, or even picking up on cues provided by dd1 as to what she might like (and by cue, I mean somehting like:

SALT: "dd1, tiem to choose - what would you like to do?"

dd1:

You have answered your own question there, silverfrog.

The service typically consisted of no 1:1 input and then when your dd was given the input, there wasn't sufficient hands-on expertise to deliver on it. As a goal, choosing from a closed category (e.g. following someone else's agenda) is not in and of itself terrible or inappropriate.. but in the case you describe, it's spotting the problem but not knowing the steps to take to resolve it. And probably having no time to plan the therapy and certainly no time to build up sufficient rapport. If everyone had been having 90 min home sessions, perhaps it would have been better.. because the therapist would have some trial-and-error knowledge. As it was, she had none.. So your dd1 showed an opening in terms of a reinforcer but because the SALT was fixated on an "end product" target and didn't have the know-how of how to use this to meet the objective, it was.. well.. rubbish.

If people aren't allowed to work with kids, they don't develop any practical skills. It makes sense, when you think about it. How could you possibly know what to do with a child if you've never done it? Theory can only get you so far. It's a disgrace and a crying shame and it should never have been allowed happen!

I

How depressing Silver, how uterly depressing.

9-5 I am hopeful that something better can be achieved actually.If one has a fairly static caseload (as I have) then you can work with staff on training them. That is what I spend 90% of my clinical time doing, via a mixture o mass training and more individualised small group training within classrooms where, as staff grasp the concept of data collection and appropriate decision making, I fade myself out until I am just hovering and monitoring (in the real sense of the world. I get a lot of data sent to me electronically which means we can make decisions quickly and as my main method is Precision Teaching, I have only to glance at a standfard celeration chart (that I have taught a member of staff to use) to come to a decision in seconds.

It works like a dream.

Lenin, whilst i fully appreciate there are certain procedures one has to go through to have a full assessment and diagnosis (if that is what is needed), the idea that a paediatrician or a clin. psych or even a SALT has any meaningful input into day to day educational provision is a nonsense. They will write a vague report, much like hundreds of others which noone will really bother rerading. least of all the people that really matter, that is the extremely poorly trained 1:1 takewn on to look after your child. (Chances are, she won't even ber invited to the review.)

My generic advice to any parent with a child with comm/educational needs would be to think very carefully about the purpose and worth of the mishmash of support you will be offered, none of which will be joined up (it may be in extremely rare cases). If the hassle of receiving a service outweights its benefits, cut it out of your life. I hear stories of people who claim they can't work because of their kids' appointments and therapies.It's madness (unless child has life threatening illness) putting your life on hold to attend some vague 'support' group or routimne appointment.

I would advise to keep numbers involved with your child to an absolute minimum, go into meetings armed with bullet points of points to discuss and a scribe to take notes and to always always ALWAYS leave a paper trail.

Parents who write proper coherent letters are taken very very seriously indeed. People know not to mess with them.

Lenin- the best thing you can do to help him is exactly what you are doing - readign up on different interventions, asing questions, and tryign stuff out. you are in the best position to see if somehting is working, has drawbacks, is being implemented properly etc.

I am the same as swc - I can count on the fingers of one hand the numbe rof people who have actually listened to us, taken time to understand what dd1 wants/needs, and acted on this. rather than push their own agenda (which primarily seems to be "pigeon hole her in the same box as all other SN children"), and promote a form of education which actually would result in dd1 playing all the time (in sand, shaving foam and sensory rooms)

it is utterly bewildering being in the SN world. it can seem like being in a bizarre sci-fi series, where all is not quite as it seems - poeple say one thing, but mean another. they tell you one hting in person, but state the opposite in a report. they agree face to face, but undermine you behind your back. and all of it, for no apparent reason, other than they do not want ot actually do anyhting beyond push paper around, shuffle caseloads, and get dc signed off their services as soon as possible (apologies to those on this thread who are nothng like this, btw - but we hear it time and again on the SN boards; I know (sadly and horrifyingly) that my experiences are not isolated ones)

Lenin: I would say - identify posters who seem to know what they are talking about - quiz them mercilessly about how/why/when they chose the intervention they did. research it yourself. if it seems like it would suit, has a back-up you can live with (not all of dd1's interventions are as scientifically backed as ABA - she did Sensory Integration for a while, adn it really had a positive effect for her. but I knew enough to be able to take a baseline, knew enough to not work on/change other things while seeing if there was an effect, and knew enough to try it out). then try it out. return to quiz posters as necessary - we are all usually happy ot help out when we have the time, and god knows there is a breadth of experience on the boards.

if it works - brilliant!. if not, deicde whether to stick with it (with maybe some tweaking) or try somethign else.

I would say: do NOT rush into everyhting willy-nilly. this is a marathon, not a sprint. but do not be afraid to try stuff either. we are all just feelign our way through all of this.

The thing that depressed me the most was the blind hatred of ABA exhibited by every professional we ever came across. And it WAS blind, because, to a man or woman, none of them had the slightest clue what ABA actually was, and what an ABA session involved. The fact that they tried so ferociously to dissuade me from even looking into it will make my blood boil til the day I die. Especially considering the almost-laughable shit they offered as an alternative. Following DS around copying his stims, telling me to sing to him and, this one's a blinder, telling me to speak to him more, but this time allowing him the chance to respond. And that was pretty much the sum of it.

I can't even find words to describe the icy terror I felt when I realised that they were deadly serious. That he would never have any intensive help, he would never be given any specific targets to work towards, that he was already being written off as permanently non-verbal (at 24 months) and that they had already plotted his future path...fuck all until age 4, then a year at the TEACCH nursery, before settling into an 'education' at the nearest SLD unit for the next 14 years. And then what? I shudder to think.

I'd rather believe that it's brainwashing on a grand scale than believe that all these people are wilfuly spreading misinformation and lies that could sever a child's life chances.

I have heard parents dismiss ABA as the work of the devil too, but again not one of them had ever seen ABA in action. I believe with every breath in my body that no parent who saw a well-executed ABA session would ever feel anything but wowed. Especially if they'd swallowed the party line up until that point. I reckon they'd be mad as hell too

I highly recommend this readable and inexpensive book by anyone wanting to think about an alternative approach to ASD than the one routinely dished up by public sector workers.

Fedup, you are right.
Icy terror just about sums it up.
I know that feeling.

Silver, are you willing to share your US experience here?

Silver, yes, that's exactly how it feels, Twilight Zone sprang to mind many a time! Or maybe it's more a case of Emperor's New Clothes...we all pretend our provision is great, and it will be so!

Actually 9-5 I would not start by targeting the SALTs, but rather the thousands of SEN/ autism teachers in our shiny mainstream units and state ASD schools. It's a massive infrastructure which already exists, but is simply facing in the wrong direction.

Just replace their (woefully inadequate) 5 day TEACCH training course with an equally basic 5-day ABA course. It wouldn't cost much to do so, and hence might gain faster political support.

I reckon the changes in outcomes in the schools would be startling, and certainly the research would back that up. Then tackle the SALTs next, once front-line staff are done. It's a bit like the argument about sexual equality : we will know we have true gender equality when there as many mediocre women in positions of power as there are men. In the same way, a mediocre ABA-trained teacher would still trump a mediocre TEACCH-trained teacher, as ABA is the more robust methodology.

I wish the govt education bods, or the Autism Education Trust, would read this thread!

yes, happy to, moondog.

we went to see Growing Minds

they are predominately ABA/behavioural based, but with a backgorund in SOn-Rise, via all sorts fo other training. they rule nothing out, basically, but follow everyhitng form a behavioural perspective (much as I do, I suppose).

they are a small outfit - all is as you see it on the website. but very well set up. we needed some help with home life with (severely) ASD dd1, and (probable) PDA dd2. it was all getting a bit hectic - if (and that is a big if ) one dd was quiet for a moment, the other certainly wasn't, and what the 2 of them needed seemed to confict a LOT, and it was imppossible to see a way through that suited everyone (including dh and me).

I went to a conf last November, and was interested. We wanted to take the girls to Disney, so combined the holiday with seeing them.

Was a busy, exhausting week. Bt very informative. they have a great set up where they have a sitting room which leads to a playroom, with an observation corridor in between, with a one-way window etc. dd1 sussed the window in about 5 mins , but it was a really helpful set up, as we could get on and do stuff with the dds, nd they would react far more naturally because there wasn't someone else in the room - or they could ge ton and demo stuff, and the dds woudln't act up because we werent in the room, etc.

they asked for a lot of info beforehand, to try to get a flavour of the dds (lots of video to show interactions etc), so we could get straight on with it when we arrived.

within the 5 days they:

had dd1 reading new words, and decoding phonically
had dd1 beginning to play the piano
had dd2 modulaitng both tone and pitch of voice, as well as thinking about what she said, and talking nicely (her biggest issue), as well as taking turns, playing nicely, and being a good sport (ie congratualting and being genuinely pleased for the winner ) = sounds like small stuff, but dd2 is only just 4, and has issues with regulaitng her voice (shrieks everyhting), as well as had learnt that shouting got the result she wanted as dd1 would walk away (noise sensitive)
had dd2 tellign the time (we weren't hothousing, honest - she was interested!), and beginnign to read too.
worked on some DI stuff with us, and helped us out with some tips to head off creating tantrums on either one of them.

we arrived after a packed week at Disney - dds were hyped up to the eyeballs , which gave them some good examples of stuff to work with .

the biggest thign they worke don is the girls' dependence on me - they both crave me constantly, and will sit on, next ot, use my hands as tools, my space and even my own body is not my own - always happens with small children, but mine are 6 and 4 now, and still at it! and they worke dwith us both on how to manage this without me climbing the walls, to great effect.

I had a feelign they woudl have been great on the solid educational stuff, but we only wanted/needed to fiddle around the edges of that, as dd1 is in a great place - we needed the family/whole round support more, iyswim?

Yes, I know about Growing Minds.

Sounds as if you got a lot out of it.

is this a new you, moondog? - have seen you politely agreeing on another thread or two, where you clearly want to type "oh ffs, noooooooo!" (am not being sarky, btw - but oyu have been known for your ahem, clear views before, and I detect a change in style)

Wow, that is one enlightened SALT you met swc! Yes, Daphne Keen was lovely , though I wish she would stop recommending the much-lauded but (imho) useless TEACCH pre-school nursery for autistic kids, which she recommended to us. Though I guess the sad truth is that, when presented with a 3 year old autistic kid, there really is no other nursery-level pre-school for ASD children in the Greater London area for her to recommend. Let's start an ABA pre-school ladies!

And Silverfrog the Growing Minds sounds fab - is there anything equivalent over here, probably not?