ABArrrrrgh! Shocked at cost - help!

[WorrierPrincess]

Well if I wasn't pissed off enough about DS having asd, I'm now seriously fuming about the cost of therapy.

I've been looking into setting up an ABA programme via consultants, and have been astonished to learn the initial cost of assessment and training is spiralling into thousands of pounds. WTF?

Part of me feels so overwhelmed by having a DS I so desperatly want to help that it's tempting to say "oh just take the money and fix our son!!"'(yes I know, it's not a cure).

But seriously... thousands just to set up some unregulated, unaccountable programme? Needless to say DH's reaction was: forget the ABA altogether and pin our hopes on the LA's preschool nursery for ASD kids (DS might get five sessions a week from September in a small group, using TEACH of course)

Well that's filled me with despair. From what I can see, the LA's help might stop him falling further behind his peers but it's hardly going to help him catch up.

So is there a halfway house? Naively I thought we could just take on somebody already experienced in ABA to work with DS two days a week, and also train us so we can make it part of our parenting. I was expecting to have to pay somebody experienced a reasonable rate but upwards of £100/hr....

Do you need a "case manager"? A "supervisor"? All this effin paperwork? I want to help DS, not run some sodding bureau.

Heeeeelllllppp! (please) x

oh dear, I come back to this to reply to your post Pipin (thanks btw for answering me) and see a rash of deletions! I didn't report the thread. for the sake of fairness, I will ask MNHQ to delete my post last night as well.

today's another day Pipin, and it's all calmed down now, hope you don't take too long a break

I'm fairly certain my posts didn't warrant deletion but perhaps MN wanted to be seen as being even handed!?

Whoah... had a couple of days in MN-free zone and just seen how frayed this thread got! For what it's worth we've made our minds up already to do ABA so all advice on how to go about it has been gratefully received. Whether we end up spending thousands (or just popping to WHSmith for a shiny new pack of pencils) the main thing is we want to try to do the best we can for DS and this to us lo

.... Gah, trying to post on iPhone! Anyway was trying to say ABA looks the best option to our minds. Yes there are good and bad practitioners, and no there are no guarantees (as with pretty much any medical therapy, far as I can tell). But we'll have tried. That's the main thing. And god knows i wasted thousands on completely pointless things before kids came along so even if it turns out I've wasted my money on ABA, I'll have wasted it on something that counts.

we've just taken on an A level student for the summer - she wants work experience so it will cost us very little. She has a good rapport with ds, we'll do a couple of training sessions (ABA & the OT programme) & she can be an extra pair of hands for me. She probably wouldn't have been up to it when ds was very young & hard work but I think she'll do fine now.

Hi

I haven't had time to read any of the posts apart from the OP but just wanted to say that we are doing ABA (well more like VBA) with no tutors, just a consultant. Our consultant is training me and while it was all very daunting to begin with, DS has come on in leaps and bounds since we started this in November.

We see our consultant about once every 6 weeks at a cost of £250. It also cost about that for DS's programme.

If you are really skint, I do honestly believe that you can make a huge difference without consultants and tutors if you buy some ABA/VBA manuals. There is a really good one by Catherine Maurice and someone else - I will look it out at home and PM you with it if you like. This is a bit old fashioned but you can adapt it to suit. Another brilliant manual is Motivation Towards Recovery which you can find on Amazon.

If you can afford a consultant at least initially then of cours that's better but you are the people who know your child the best and who spend the most time with him. You don't need to get tutors in for 40 hours a week. Peach told me that when I first looked into the ABA thing and I remember putting a post up on here much like yours.

Whereabouts in the country are you?

soutty cheers for the reply. We're London way.

soutty keep posting stuff without finishing (cursed phone). Great to hear youve made great progress on yr programme. How do you organise yr sessions throughout the week? I think in a few months time DH and I will be able to take a lot more charge of DS's programme but for now I just feel really stressed out by looming dx and a bit too overwhelmed by even the thought of doing something so scary and grownup as an autism intervention i don't reckon I could do a good job of it without some serious hand holding. So a consultant it will be.

soutty keep posting stuff without finishing (cursed phone). Great to hear youve made great progress on yr programme. How do you organise yr sessions throughout the week? I think in a few months time DH and I will be able to take a lot more charge of DS's programme but for now I just feel really stressed out by looming dx and a bit too overwhelmed by even the thought of doing something so scary and grownup as an autism intervention i don't reckon I could do a good job of it without some serious hand holding. So a consultant it will be.

Felt like you at the beggining....How much??!!!! Still feel a bit like this now but I don't regret a penny of it.
My consultant has trained me to be lead tutor so it is only her cost. I approached several provider telling them exactly my budget, and that that was that and not a penny over. I rely so much on her now; she has an answer or at least a suggestion to everything, whilst I found it wasn't necessarily the case in other therapy. The pride you feel when your child start doing things you did not think he would! And once you are a confident tutor, call for volunteers (most are psychology student; you offer them experience with an ASD child plus free training with your consultant: usually win-win. Got bit repsonse!). My advice. Go for it! Good luck

Just looking at your comment; applying the therapy once you have been trained is not difficult, honestly. For me, it was amazing; my DS is sevrely autistic and yet he is doing so well. He has maximum support by LEA, but trust me, ABA, that's what made a difference.

We did it ourselves, part time after school with some distance consultation (after a training course) and some experienced and inexperienced tutors. Doing it that way still costs thousands (that we didn't have) although it was pretty cheap by ABA standards.

If I'm completely honest give my time again I probably wouldn't do it at all. (I know that's heresy on here, but it's my view).

Although having said that, an understanding of reinforcement is essential when you have a child with an ASD.

There were (are) a lot of weaknesses inherent within home based intensive programmes.
As in most professions, things have moved on a great deal.
Although I am a huge advocate of ABA, there are programmes I know of and have heard about that I wouldn't go anywhere near.

A home based programme requires huge sacrifice and invasion for a family and unless positive developments in communication and independent living skills are at least commensurate with that, it isn't worth it.

I know one family who have had their lives lived like this for over 12 years and the differences in the child are (in my opinion) negligible, bar the fact that he will sit for hours doing table top activities.

One of my closest colleagues spent 10 years working on programmes like these.It's interesting to hear her opinions and how they have changed, now that she has an MSc in ABA and like me uses ABA in the public sector, thus always knowing it is an integral part of evertyday life, and not some weird add on in a 'therapy room'.

I don't think that ABA was bad as such or negative. There were positives - ds1 for example learned to imitate aged 8 via ABA which is a huge positive. But directives became an issue, really quite a bit issue (of course we still use NET - all the time) and the financial cost has been enormous. For us the benefits have not been worth the debt it led to and the amount of work I am now having to do to clear that debt. Or rather we could have got the benefits without spending the enormous sums of money we did.

TBH in our case surfing has had a bigger, more positive impact on ds's life and changed it more profoundly than ABA.

Certainly properly understanding about reinforcement is essential in dealing with ds1. Particularly because he is not reinforced by 'typical' items and it was helpful to understand why people blowing bubbles repeatedly in the early days was having zero effect. It's also been enormously helpful to understand reinforcement when working with ds1's challenging behaviours.

And we did ABA more cheaply than anyone I know. It was still way more than we could really afford.

If we'd had money to spare then my views would be slightly different.

I also think my aims at the beginning with ds1 were misguided. We sort of put life on hold for a few years thinking we had to get ds1 talking/understanding/waiting/whatevering before heading out to do fun stuff - if that makes sense. When that happened and we got on with life anyway we found that ds1 made huge strides.

It wasn't quite as extreme as it sounds written above, but there were elements of that and I think I thought ABA could deliver more in terms of developmental gains than it can to someone like ds1.

Yes and issues such as the importance of reinforcement and the issue of imitation shoudl be at the heart of provision for children with ASD in particular. The scandal is that they aren't.

The provision of s/lt (fro example) for children with ASD chills my blood because, despite the best intentions in the world, most of them have no understanding whatsoever of these issues.

With regards to the surfing, it sounds as if you finally identifies his biggest reinforcer.

I am always reading books on ABA for parents in a quest to identify appropriate reading matter to recommend. Motivation and Reinforcement is one that would be at the top of my list.

It's fantastic and so warmly and simply written.

Sorry when that didn't happen

Agree that the lack of work on imitation is missing from pretty much most mainstream teaching with ASD kids (yet present in every ASD specific therapy!). We worked on imitation in many ways and I can remember the day ds1 got it. It led to profound cognitive changes and changes in understanding as well.

I'm not so sure that surfing acts as a reinforcer tbh. Well not in a reward type way. It's just an activity - I say 'just' but that's a big thing. Until we found surfing every activity ds1 did would last seconds. Except horse riding which lasted 10 minutes on a good day before he'd get off. And sometimes he'd go hiking on the moors, although it was a bit hit and miss. But everything else was fleeting - seconds or minutes. He'll surf, and remain focussed surfing for hours given the chance (usually drag him out after an hour).

So partly it's given his life a meaningful activity (which happens to be fun) and also - another big one- access to a very accepting mainstream community for the first time ever.

Oh that book looks good, will have a look at that...