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, most people in the LEA would regard this thread as having a cult following of deluded parents throwing money at america cowboys who promise them their dream of a cured child.

Any attempt at a protest is met with a knowing smile and an absolute refusal to engage with any of the ideas of that parent less they become indoctrinated themselves (or potentially have all they have ever believed in challenged to their discomfort).

'You will (ABAists) note that an ABA private practitioner was recently sued for damaging children in the usa - why cant we sue them here (LEA) for damaging our children out of neglect?'

I'd like to know more about this. Any references?
There are good, not so good and bad in every field and ABA no exception but accessing a board certified behaviour analyst is the best chance you'll ever get at finding someone who understands the science of learning.

Re whether or not to sue, there is a great quote in one of my favourite books of all time which should be essentail reading for anyone interested in effective learning on there being more comeback for seeling a bad hamburger than there is for ruining a child's education.

So bloody true.

slinky you might want to listen to the talk by the khanacademy geeza that Moodog linked to on a thread in SN (free resources or something).

This shows a very ABA-like model of education where the teachers are freed up to be creative and nuturing and god forbid 'accepting' whilst ensuring that essential skills are mastered.

Yes, quite Star which was the resason I put it up. Effective teaching such as Direct Instruction and Precision Teaching and Discrete Trial Training (all ABA) happens very very very quickly.

So there are then vast swathes of time to bugger about with mud and clay and 'sensory' experiences. Difference is that peopel don't pretend that this is the educational bit.

Khan stuff is exactly what one can do with Headsprout (more ABA) for example, keeping track of many children quickly and easily, thus maximising quality of pupil/teacher interraction.

All of this kind of stuff will be discussed in detail at the EABG conference (and at the ABA International conference in Colorado in May in which I shall be taking part.

Yes Lenin.
That is essentially it.
RThere is no punishment or coercion.
You look at what makes the individual in question 'tick' and make getting those reinforcers conditional to the individual doing what it is you want them to do.

PDA
Pathalogical Demand Avoidance yes?

I don't 'do' labels.
I just look at presenting difficulties.
If you had someone who knew what they were doing, then yes. It's the art of learning so you can use it to learn anything-in most cases, the target would be socially useful behaviour.

justa, I use ABA with PDA-probable dd2 (well, i would, really, wouldn't I, given our history in it? )

the thing about ABA is that it is not one thing - as Star said earlier, it does whatever you want/need it to do for a particular child in a particular situation (and then works on generalising parts of the "lesson" as appropriate)

Slinky: I am coming late to this (sorry - abroad at the mo).

dd1 is in an ABA school.

to get her there, we had to:

fund our own home programme for 2 years (part time)
move house, put d1 into a TEACCH based ASD pre-school and let her fail for a year (most of that year self funded - cost of £20k or so).
self fund her initially at the ABA school (annual tuition £50k) while we took the LEa to Tribunal, as well as funding legal help to (try to) ensure we won. And then move back across the country to lessen the commute I had taking dd1 to/from school, which had been imposed due to previous move for ASD preschool. I was taking her 40 miles each way to ABA school.

In the end, our LEA settled before Tribunal, but not before considerable cost to us, as you can see. we are now stuck in a county we don't want ot be in, as d1's statement is issued by that county. her school is in the next county (we now live on the border between the counties) - ironically where we first lived. we no longer live in our house, but cannot sell it (thankfully it is rented out) and rent instead, 25 miles away. overall, to get dd1 ino ABA school (she is 6, has been there for just over a year) has easily cost us £100k, if you take into account the home programme, the legal fees, the TEACCH pre-school to prove she owuld fail, and the ABA school fees initially, plus 2 house moves.

as others have said - Early intervention pretty much consists of referrign children left right and centre, but not actually DOING anyhting. lots of bits of paper chase dd1 around, but nobody other than her school actually does anything even approaching useful.

and, although dd1's school is excellent, they have their limitations. they are a very small, new school, and cannot provide much by way of outreach. but the nhs consider it covered by her school.

we are abroad now because we have come to the USA to consult with some people re: dd1 (and dd2 to a certain degree) and to gain some insight into how to handle our home life - we are muddling through well, but it could be smoother. but it is costing us another wodge of cash (which thankfully we can afford). trying to balance dd1's needs vs dd2's needs is tricky, but we get no support at home for this.

Everything useful we have doen has been done privately.

Bolody Hell Silver.
Bloody Hell.

It's so shameful that people have to suffer like this.

oh, i thought everyone knew our story Moondog - it has all been played out on here!

the bit I resent the most is the impact on dd2 - we had to uprrot her when she was 18 months old to prove to nameless, faceless people who had never met dd1 that she would not learn using their methods (ie put her into a TEACCH school).

we stayed there for 18 months, but could not access toddler stuff as dd1 would not have been welcomed (above age, disruptive etc - beofre the move she still came ot baby groups, but with a group of people who had known her since she was a baby, and who she had known for years too, so allowances and understanding in place)

then we moved again.

I am not the best at making frineds (and it is isolating when you have achild who does not integrate with children!).

and we now live tantalisingly clse to where we used to live (20 miles or so - too far to be part of that community, but close enugh to feel the loss, iyswim?) - where dd2 would have gone to school, at my old school - where I grew up (in part), etc etc.

and I hate the fact that we cannot move back there - the commute to dd1's school woul be the same (about 15 miles now, the closest we can get), but we woudl be living where we want to live, rather than where is dictated by those same nameless, faceless people at the LA. but we cannot move over the county border, as dd1's statement woudl be reopened, and we woudl be unlikely to get the same result again - because school LA are complete and utter tossposts who have a (previously pro-ABA) lawyer on retainer to fight ABA cases.

aside form the money (which of course, we are very lucky to be able to afford), the thing I really really resent is the way I can no longer make free choices about my life, as provision, intervention and statementing is such a postcode lottery.

dh was saying yesterday he woudl really love to do another overseas posting - all very possible with his job. and I would jump at the chance to come to the US, or Canada for a bit. BUt then we woudl have to return to the Uk at some point, and we woudl have lost dd1's school place, no guarantee of getting it back (school woudl be ok with it, but LA not) - how can I give up the balance of dd1's schooling for 3, maybe 4 years overseas? impossible choices....

oh, and the other thing that gets me is how you (one) play "well, it could be worse" - ie, yes, we have spent over £100k. but compare that to not winning vs the LA - that is actually "only" 2 years of schoolign for dd1

we got the LA to agree the school, and they didnt contest her annual review. they will now have a huge fight to ge ther out before transition to secondary (her school continues into secondary. whether dd1 will still need it then we will see..) so, overall, that will be another £250k.

look at it htat way (entirely the wrong way, i know full well), and we got off lightly.

the whole system makes you look at things form a skewed perspective - there is no way I should eel grateful that my dd is getting an education that enables her to learn (i couldn't give a stuff what qualificatins she ends up with - the ability to learn has been her biggest achievement, and the most far reaching)

but I bloody well do.

Staggering.
I knew you'd had a rough ride, but was not aware of the extent.

You should write about this stuff and submit to educational press.

If it is any small comfort, know that not everyone is like this. Where I work, input form both NHS and LEA using principles of ABA is offered without one even having to ask for it or know what it is.

I am so proud of that.

silverfrog, I have no idea whether you intended to be a SAHM, but I literally CAN'T work and keep on top of the school and LA on behalf of my ds, as well as compensate for them after school. (if ds was in a school that was catering for his needs, without the huge requirement for input from me I could actually work)

That represents hundreds of thousands of pounds in lost income and a much downsized lifestyle which, given we have to privately fund everything ourselves is ill=afforded.

We are now selling our house and moving into rented.

Lenin, you need to do a calendar with him |(unless you already do)?
I've explained elsewhere here how to use one.
Vital to give people a sense of order and control about their lives, irrespective of age or ability.

Slinky, Are you in education yourself?

An angle that the teachers often are encouraged by LA's who like to ensure ambiguity take, and may well be a good angle for your work is that collecting data and evidence is akin to 'form filling' and removes the 'teaching'. There is also a well loved idea of some teachers that not all things learned can be documented or evidenced.

Evidence-based practise can sometimes be seen as undermining the teachers professionalism and expertise. (I expect this argument is also used by the son-rise people)

If you watch the Khan Academy talk you'll see why this isn't so.

Star - yes, i was always going to be a sahm while the children were small. (yet another thing that SN has buggered up - would *definitely have had more than 2 without ASD; we are still debating no.3, but ooking less and less likely tbh)

BUt of course, now I am faced with 2 children going to school 20 miles apart from each other. Knowing how transport is in the county I now live in, I will not leave dd1 to their mercy. so no, I cannot go back to work (just on this one fact - as you say, keeping on top of everything dd1 needs - and dd2 as well - plus keeping on top of LA, cannot be done around work. well, it could. but dd1 would suffer - it's a bit like the going-abroad scenario I mentioned earlier. I could do it, but I would know from th eoutset that it wasn't in dd1's best interests)

on top of not being able to work, we will at some point need a nanny, just to ensure I can attend eg dd2's school functions - I have already missed her class assembly, a volunteer's day, and she is in wrap around care, as a pre-schooler with a mum who doesn't work! madness.

moondog -it is fab that your area does this. you should rightly be proud.

but it angers me that there is no cohesion on what to do/how to deal with SN. It infuriates me that there are different outcomes on even applying for a Statement depending on which area you are in.

We shoudl not have spent 3 years getting a Statement for dd1 (severe ASD). We should not have spent nearly 2 years getting a dx (I first saw a hv when dd1 was 10 months old, as it was clear that somehting was not right. I was angry at the time when I was clearly fobbed off ("isn't she beautiful" "oh, she's lovely - what a good girl to give mummy a break from the constant entertaining" etc) - when I had dd2 (who has a whole heap of issues herself, but is obv far nearer the NT end of things) and it was clear just how obvious it was that dd1 had had exactly the issues I was pointing out at 10 months old, I was enraged - how can those people live with themselves? how can they belive it is ok to tell a concerned mother that it is "normal" for her 10 month old to not play with anyhting (literally)? how can they say it is ok for a 14 month old to play with one brick for 45 minutes (as dd1 did while I spoke to them - I was made to feel as though I was looking for somehting to be wrong, as "dd1 is playing so nicely - most mums wouldn't get the chance to chat like this" - err, yes, that was my point exactly!).

I was told at one point in the dx process I should consider myself lucky, because dd1 was obv not severe - because she was not rocking in a corner, or headbanging. this was just after I had describd how the only thing that interested my daughter was sitting by the door of her bedroom, scratching the wall with her right hand (newly discovered right hand at that - until she was 16 months or so, dd1 only used her left hand. literally. you could have amputated ehr right arm and she woudl not have noticed. then overnight, she switched, and did the reverse. not a problem apparently ). she woudl scratch (if left) until her fingernails turned back, and her fingertips bled. and wouldn't notice, and carry on scratching. but that too was ok, and she had no problems, just a "late starter"

she mad e a hole in that wall. went through the plaster, right down to thte brick. and carried on scraping. but it was still at least 10 months after that until we saw a paed that took what I was saying seriously.

dd1 was dx'd at 2.7ish. "good and early" I am always told.

except I was reporting issues with her form as early as 10 months old. there is something seriously wrong with a systme that gives no support to a parent for that long, on top of dismissing their fears, and belittling their thoughts and feelings. as well as implying that the only problem is that the child is not "good enough" for the parent - wtf? all I have ever wanted is the same as any parent - to make sure my dd is as happy as she can be, and has the ability and opportunity to reach her potential.

SilverFrog - :( :( :(

Once again words fail me.