Sorry McK been off but going back to ask what books about ABA is good...only read Catherine Maurice about a mum sitting outside the room whilst the tutors did the ABA...this gave me huge motivation before I started ABA with ds. Other that that research ...to check how great it was...is!

Electra I did the 70hrs cause I was stressed for 2 years ds not talking and getting worse by the day (behaviours) it did give me control back and built our relationship to a level closer than I never imagined...Ed Psych said he never saw such a good relationship bond...it was all down to ABA. ABA is a 24/7 thing now just do it all time to maintain behaviours etc but I don't do it as part of hours now. I attend workshops/supervise/discuss/communicate between tutors/ resources/ put programmes together/ pay sheets/HR/meal preparer/taxi driver/extra for three group sessions verbal communication etc/cleaner and of course tealady . SO I can do the ironing now I just choose not to

Trouble is also, until now, people with BCBA have been charging people who want to take BCBA exams an arm and a leg for compulsorty supervision.

My fantastic academic supervisor does not charge as he considers it a moral issue (and foregoes about £25 00 a year because of it).His hope is that we will achieve a critical mass who will in turn supervise others for nowt in the next few years.

He is a depply honourable man.

Yes, moondog I agree.

You're right about that, moondog! I remember when we started ABA someone telling me that unqualified people with not nearly enough experience were advertising themselves as consultants - I am glad to hear that is changing. Actually a good consultant will tell you if they think a potential tutor is not suitable...

Electra, re this comment

'But cyberseraphim - I think ABA, more than anything else has research to show that it does actually work'

It's not just that you tihnk, it is in fact the truth.Nothing else (SALT, SIT, music therapy, Portage, blah blah blah) has such a strong evidence base for this population.

Fact.

mum2fred - don't worry, you will find good tutors. Having said that, I don't believe that everyone is suitable for ABA teaching. But you get to know whether someone is going to work out or not and a lot depends on how reinforcing your child finds that person. If you are recruiting your own tutors and not using a provider, then do be careful though. Some time ago a parent on ABA-UK gave me specific advice on how to screen effectively.

The gold standard is having someone in charge who has either an MSc or PhD in ABA or is a BCBA (Board Certified Behaviour Analyst).

The field has been poorly regulated until now but this is changing fast.

''So a lot depends on quality of tutors''

eek!

But cyberseraphim - I think ABA, more than anything else has research to show that it does actually work. I don't know anyone running a program who isn't happy with the results....but having said that an ABA program will be less effective, or in the worst instance actually damaging if the staff applying it are no good. So a lot depends on quality of tutors.

Also, the fact a child is non-verbal does not mean that they aren't making any progress - receptive language is, imo most important. Some children will never be verbal however much intervention they receive, but that doesn't by itself indicate that they are not progressing...

Oh Moondog, I can give you a running commentry if you like. Mine spent the whole session getting my ds to say 'more', which was his first word and one that he has been using for over a year.

No need to apologise.
I agree.
I don't think the vast majority of SALTs have appropriate skills to deal with this population so looking for specific examples to back up my theory.

Sorry maybe that was too sweeping - i know some SALTs are very good Just the one I have now although a great improvement on the last one is still a bit vague and 'oh well that's just autism for you' in her remarks about DS1's language development.

yber, I am very interested in what you say here

I am finding VB very useful esp the VB - Mapp as it shows you how to assess your child's language development, which as we all know is information you cannot get from an NHS SALT for love or money...

Can you elaborate further?

I agree Electra - an ASD child who receives no help at all compared with one who gets good 1-1 (whether ABA or something else) is likely to have a much poorer outcome. Equally an NT child left in the desert won't do that well compared to one that goes to school. It's just that I sometimes get the impression that some ABA providers over stress the positive outcomes to parents. When DS1 was dxd, I spoke to 2 parents who did intensive ABA (but in both cases child was still effectively non verbal) whereas I have since met other parents who have done nothing specific or very intensive but whose children are doing fairly well. But that's hardly a conclusive survey and personally I am finding VB very useful esp the VB - Mapp as it shows you how to assess your child's language development, which as we all know is information you cannot get from an NHS SALT for love or money...

cyberseraphim - although I know what you mean about the various factors affecting outcome, I think you can conclude that someone who has received no intervention at all would have had a better outcome if they had had intervention. Early intervention is very important for young children with ASD, especially those who present as 'severe' and are 'hard to reach' and who can't learn from their environment like NT children do. I remember after my dd was diagnosed with autism, the report from the paediatrician said 'the task now is to find an effective teaching method for L' She had to be taught how to learn.

And Cyber, exactly.

Exactly.

<nods head furiously>

Starlight, sounds terrific!

mummy2fredandpudding Thanks for your confidence boost. You wouldn't be saying those things if you'd just seen my terrible attempt at some table-top exercises. It left both of us very cross.

Don't speak to the council. Just send the template letter. You don't have to through with it, but they have to respond within 6 weeks to say whether or not they will assess, so you've got all that time to do your research etc.

lol, - it's good you and I are doing things the opposite way (you ABA, me Council), hopefully it will mean in somethings we we'll be able to share our learning.

sounds great starlight. every bit helps. i find it so hard to put into practse, i admire your ability to find occasions.

re: books, ive got it on order from lulu.com so cant ouch for it myself, but a mother doing ABA/VB right now said that robert schramm's Turning the Tables on AUtism is her ABA bible.
]]http://www.knospe-aba.com/cms/en/home.html]] is his website which has a great section on ABA info.

our situation has changed a little in that the more nad more feedback we get from Oz, the more the sugestion from the professionals s how much better the access is to help here in hte uk

so we are now thinking that we are going to stay here for 6 month - 1 year and get a good whack of therapy under our belts so that we feel more confident about transferring it to australia

(how MUCH are our lives turned over by a dx?!? amazing.)

So we have organised a starting session with Duncan Fennemore from the end of hte month and im madly trying to source tutors.

(if any of you lovely lades doing ABA have great tutors who are looking for some more work in london....)

Have also started hte statementing process by speaking with my council and im already lost Perhaps it is just Friday brain (and the fact im madly packing boxes for a move in a few days which looks like being a painful one)

Electra No, I haven't started ABA. Still lost in the confusion of organising it, but in the meantime I have been on PECS training and seen a lot ABA videos and so much makes sense that I have been using it 'spontaneously' pmsl.

For example, we spent the whole day in the garden yesterday, and every time a train passed I said 'what do you hear? I hear train', and then letting him bounce on his trampoline for a few minutes, until he was saying 'I hear train' all by himself (we get around 10 per hour). The we moved on to helecopter. i.e. I hear helecopter. I was trying to get him to understand 'hear'

These 'learning' situations happen when and as it occurs to me, so it isn't systematic and I don't have any formal assessment to demonstrate his gaps, but as a parent I intuitively know what he can and can't do, and don't see the harm in doing 'something' whilst waiting/researching etc.

However, I realise I should probably be recording these things to inform the 'formal' therapy when it happens.

I agree that we should not be frightened of formal learning for any child whether ASD or not - what is wrong with rote learning anyway? I learned x tables by rote and can't think of any other way to do it. Of course the higher level stuff, relationships between numbers leading to maths etc is the real learning but the foundations have to go down before the building. But I don't think that you can conclude that if a certain adult had been on a certain program, that the outcome would have been different. There are so many unknown factors in this equation.

Well said Electra.
I agree with you whole-heartedly, particulalry this bit:

'Of course, a toddler running around who clearly has ASD is just as cute as any other, but people don't think the behaviours are so cute at 7,14,21 etc...'

I work with adults too so see very clearly the results of the 'let them be' approach.
Not pleasant in many cases.

You might find these links useful, which show discrete trial training and NET being done effectively.

SM - have you started ABA yet? If not I would think you dh will change his mind when he sees how beneficial ABA is. Even I (having a child who very obviously had a pervasive developmental delay) had this problem when dd was little. At 2, it was clear to me that she had pretty severe autism (and no functional language at all!) but a lot of people still thought I was mad to want to do something so intensive (some people still question me about whether it's 'fair' for a child to have to work so hard from the age of 3). Of course, a toddler running around who clearly has ASD is just as cute as any other, but people don't think the behaviours are so cute at 7,14,21 etc...

My dd would still be stimming all day if she had not done ABA imo. I think that leaving her like that would have been cruel. As it is, she has learned how to function better in the real world and we don't have many limitations on what we/she can do. We still have difficult times and she still very much has ASD but she has good quality of life and that's all that matters to me.

Before we started ABA I knew it would help dd. Maybe your dh doesn't yet have a full understanding of your ds's particular profile SM - do you think that's possible? The whole thing is certainly a learning curve in that respect...

electra I'm VERY new to this, but just yesterday DH upset me by saying

'why can't you just let him choose his own blocks and build his tower, why does it always have to be about him asking and learning his colours?'

'why does everything have to be an education exercise?'

Thanks for the book recommendation

We have a male tutor at the moment - he's one of the best we've ever had (and we have had A LOT over the years). He has the whole package - good technically, good at reinforcement, his administration of the therapy really flows and he has the theory really well too. It's rare to find a tutor who has all these things in abundance - I would say we have only had about 3 or 4 altogether who are like that.

'Don't Shoot The Dog' is supposed to be a good ABA book...

PipinJo - you did 70 hours a week? Crikey - I'm full of admiration - you must be a saint (and very good at doing ABA!)

I don't currently work with dd but I did when YAP were our provider, because it was a requirement that parents do one session a week (dd's program was part of their replication study). I really enjoyed it but found it totally exhausting. I do think it is a good thing though because it means your child is more compliant for you, as well as the tutors. Perhaps one slight downside for me was that I had to learn to detach myself emotionally as a parent (a skill that comes in handy when filling in DLA forms), which has meant that I find it easier to apply the interventions but does also mean that my parenting of her can appear to be a bit 'clinical' -- it's very hard but sometimes I feel I can't do right for doing wrong.

pipinjo DO you have any book recommendations that you used to help you do the ABA yourself?

pipinjo - i should hope some do. being passionate about and committed to my son is something I hope all my tutors are.... and what cute little boys to bond over

(ps LOVE the idea of having a male tutor, but suspect they are few and far between )

Well if you want to come and be a tutor for ds Moondog for ABA experience, I'd welcome you or any SALT with ABA combo with arms wide open ...The Greek was a God and a good friend....

That's another thing guys these 'tutors' whom come into your home/life can become good friends...some you have to treat as 'employees' but sometimes you do really get pure gems

Moondog thats breed NOT BREAD

Electra ds goes through this with VI also, but not all the time and not always for an hour thankfully

Pipin, this sums it up wonderfully

'he felt he did not have the skills before this to manage ASD children to achieve best outcomes and he is so confident now'

My feelings too. Traditional SALT trainig does not prepare you for this population at all.

Pipin, I am doing my level best to make sure that our numbers grow.
The Greek SALT sounds great!
A man too!

mum2fred - I did 70 hrs a week 6months then 40hrs for 4 months until I won funding....it was at this time he made his greatest improvements in a short space. I didnt have to do loads of paper work/handover to other tutor just got up every day and worked 8am-6pm as I would have with a job....mind you I didn't have anyone else to look after and no husband meals to cook etc so the ironing went a bit crazy/when I needed it at those times

Electra thats fantastic 50%, ds is 6 hours which has increase 80% from first year. School pushed for ds to be in more after 1 year they hate ABA and ds is moving school Sept to a friendly ABA school. He is a different child at home to school though still needs to learn better generalisation and language really poor in school. SALT works the same for us too! SALT pro ABA thankfully

Moondog I had a SALT with ABA MSc for 8 months as a tutor, he has gone back to Greece but my son's language came on so much since he joined, he wrote me home work programmes to do which ds thrived on but he is going back to SALT and theexperience ofbeing a tutor and knowledge of MSc he is looking forward to it...he felt he did not have the skills before this to manage ASD children to achieve best outcomes and he is so confident now I will truly miss his expertise but ds will miss his male "friend"....I wish their was more of you around Moondog, a rare bread

whoops!!!! dropped a word in that sentence. - and what a bad word to drop! meant to say 'it's not UNUSUAL for mums to do this!' Sorry!!

i get the feeling that in most ABA programs a parent is heavily involved. I sort of want to know that me (who always gets the poor behaiour from DS1) taking on a good portion of therapy myself is just as effectove as anyone else. (In which case hope to take the lead roll.)

Like a lot of SN mums and dads, when faced with helping the people they love most in the world... well...it feels very important for me to be instrumental in this. I feel like ds developing well is my thing, my goal for the next fe years. THe most imporant thing i've ever done.

Just want to know other mums take on being involved in a program.

mum2fred Why isn't it for mums to do this? That seems a bit odd. Some of us won't have a choice in any case. Perhaps it's just that it isn't 'ideal', but I honestly can't see why with the right set up and support you can't do some of it yourself.

hiya - new question!

one of hte things we are thinking of doing is taking on some of the ABA hours ourselves. Well, myself anyway. I know that it's not for mums to do this. Does anyone have any experience of this?

im worried that ds's behaious might be dfferent wth me/dh and less productive. any thoughts

Electra, I don't think you need to apologize.
I think what you say is sopt on re SALT.
The examples you give regarding your own child show how ABA and SALT can work together briliantly.

I often say that SALTs know what needs to be worked on but lack the skills needed to teach, reinforce and maintain that behaviour.
Which is where ABA comes in.

In the right hands, it's a match made in heaven!

im just so lost as to how to go forward with Fred. I dont know how ot discipline him, dont know exactly how to encourage his very few words or even what types of words i need to push. I just want a really good teacher to come into my life and give me a game plan to stick to. can do that. I'm good at plans.

ANyway - thanks for all the info above. your experence nad thoughts are so invaluable to people like me.

Interestingly the two places that offer ABA in Adeliade (australia) both offer the VB program... so guess not much choice at this point. ALSO the person I am talking to who runs htis companywww.keyearlyyears.com has an interesting thing where they not only offer hte home-based ABA therapy, but have a dedicated ABA centre/daycare. Unfort it only takes on 8 kids at a time, but down the track should be able to do a combintaion of hte two.

will try to get access to some sessions. i have already watched every ABA video available on youtube!

i just heard back from Duncan Fennemore who is based a half hour drive from me, and get a really good feeling from him (as well as him coming recommended from a few. He has told us that if i had tutors in place we could get a program started within the month. Problem is, no tutors..... Well, that's not the biggest problem

At the moment I have so many things on complex decisions on my shoulders that i dont know where to begin. As I have mentioned, we are thinking about returing ot Aus to get DS1 close to family and in a stable environment that we will live in for hte long-term. DH's work told him yesterday that they would be happy to accommodate a move to Australia if he felt that is what we needed to do for our family Which is great news. However this puts us in limbo for a few months as this sort of move takes time. And I really wanted to start things here, but wonder if there is any point. We were thinking of maybe not worring about hiring the tutors, but getting an assessment and training made up that DH and I can implement on a very minor level for the next couple of months and then take the program to australia to get implemented. (and hiring a supervisor/tutors over there). Mind you, if we are going to pay for the training, might as well get a few people to watch. Argh. DOnt know.

On top of this we are losing money on a one bed flat that we own and cant rent out. The house we are currently renting was sold and we are due to move... next monday... and hte house we are going to move into has fallen through. the last thing is not the worst thing to happen becuase in light of moving back to aus soon, a 12 month contract is hardly the way forward. Howeve the upshot is that it looks like we might have to move into a tiny open-plan (cue no sound or light restrictions) one bed flat at the top of 5 flights of stairs for hte next few months. With no phone or internet. Plus we need to sell our car. Orgnaise a house to return to in AUs. Get boxes packed for not only move in a week but shipping ot oz in a month or to. We need to figure out nursery and whether we een bother ot settle him in one. Plus i will have no phone or internet access as of monday.

in the middle of a sheetstorm at moment.

However what pains me most is that in all this upheaval, DS1 is going to be stuck in crappy conditions for a couple of months and we wont be moving forward with therapy. I am so anxious to get it started.

DO you htink it is worthwhile to get ABA up and running now if only for a month or two?

PipinJo she is currently in school for 50% of her funded ABA time, although the school are pushing to increase this - they are very keen for her to be in full time. I'm quite wary!! The problem is that her teachers don't realise that her progress is not linear and that we have peaks and troughs and difficult phases which may crop up - I wouldn't expect them to though as it's a mainstream school.

PipinJo - the thing about VI is an observation of mine and it may not be true for all children but I noticed that when dd was little, of all the programs on acquisition, this was the one which would usually end up with non-compliance, spiraling downwards into screaming behaviour and it would sometimes take up to an hour to get compliance back - I also don't think it was at all effective to increase dd's 'utterance' (how many words she would use in a sentance).

Actually, perhaps I appear to be dismissive of SALT and I apologise if this sounded rude. But if you are running a full time program (I'm thinking particularly when a child is pre-school age), you probably don't have time to fit SALT in and a good ABA program should address language issues well anyway.....however my dd does have SALT input when she is at school, which is very helpful now that she's older and her program is at a different stage. It's a good way for the school to see that she is making progress and that ABA is enabling her to. The SALT sets her targets which our tutors then work on and then hopefully when the SALT comes in again, she has mastered these and new targets are set. She also formally assesses dd once a year.

I'd like to just add that SALT and ABA can and do work together very well indeed.
I'm a SALT who is near completion of my MSc in ABA and it has improved my abilities as a SALT no end and I am happy to be quoted on that!

Trouble is that most SALTs misunderstand ABA.
I doubt there are more than a handful in the UK who really get it (the same is true of ABA therapists understanding SALT to a certain , if significantly less extent).

Guys thats a good idea about visiting families who do ABA, it can be hard to explain, but if your really stuck U tube has examples of kids doing ABA for you to just see it.

That's great how well your daughter is doing Electra! How many hours is she in mainstream now a week? I can imagine how much she has come on if on it 4 yrs, ds been on it 2 yrs and he was different child back then with very black future(well according the Paed,SALT etc...I refused to listen, thankfully)

Electra, what do you mean by VI causing behaviour problems? Is it that it becomes rigid or something? Need to know to look out as well!

Ds became "no no" dependant so we only use "no" or not at all (if attention).

Its funny cause ds if given that break from ABA will regress into stimmy behaviours within week! He still seeks stimming behaviours whilst in ABA. Reinforcers often stim based. He still needs the very structured approach even though becoming very verbal (thankfully). He too used to just stim all day before ABA started.

Just one thing I would do, is keep NHS SALT as they could use (LEA) it against you at tribunal for turning down services and UKYAP will clearly state they are not SALT providers and work with SALT/OT/PHYSIO to achieve the persific skills the dc needs to learn ie ds low muscle tone OT say ds needs to do XYZ and it is incorporated into ABA programme. MY LEA were slaughtered at tribunal for stopping SALT when ds was non verbal becasue they said SALT and ABA dont marry!

Thank you electra

I would contact Peach or ask on ABA-UK if there are any families in your area running programs. There will always be receptive parents - I always let people view our program if they want to. Davros put me in touch with a family when we started ABA....I don't think she uses mumsnet as much as she used to but she is expert on ABA so I would suggest searching for her posts in the archives...

electra How would you go about doing that?

Have you been to visit any programs in your area? I would really recommend that to help you look at what would be best for your ds.

Oh, one other thing I should mention is that in my opinion VI programs (verbal imitation programs) which form part of the Lovaas curriculum can sometimes cause problem behaviour imo...

mum2fred - well our Lovaas program was completely descrete trial training when we started - almost all table top based. But we had a child with no skills, who stimmed literally all day long. It would have been impossible when she was 3 to get her to comply, sitting on the carpet for example - she became distracted with absolutely everything. This program was great for getting some much needed skills and language into her, and also to teach her how to respond and for her to realise that a response was actually required of her! I think what style of program you choose depends a lot on the individual child's needs. We changed to VB after 18 months because by that time the Lovaas program had become a bit 'dry' and dd was very much more compliant to be able to benefit a more free approach, but having said that I am sure that Sean would be as good for a child with severe ASD as UKYAP...

One major difference between Lovaas and VB is the prompting procedures used - Lovaas uses 'no, no, prompt' - where you say 'no' up to two times for an incorrect response, then use the least intrusive prompt that you can get away with before testing again for a correct response. VB programs use 'error less teaching' - the child is prompted before they get a chance to get it wrong and 'no' is not used at all. I think both are effective...

VB programs always start with mand training - all the emphasis is put on working on a child learning to mand (request) what they want - the idea being that they will learn language more quickly if they are motivated. Our Lovaas program started with teaching matching and imitation (imitation is an absolutely crucial skill for a child to have for them to be able to learn anything -- but any good provider will know this)

When I mentioned functional analysis, this means taking data on a behaviour a child has to try to figure out the function of it, ie the motivation behind it before deciding on an intervention to address it. This is where I feel UKYAP came unstuck for us on one particular occasion because they tend to use the formula, child has behaviour x, so we use intervention y. This is sometimes a very bad idea because a child can be doing the same thing for very different reasons and the intervention should be decided on an individual basis. When we were with UKYAP, my dd stopped eating one day. She had always eaten before though. UKYAP decided to use a particular intervention which our director had come up with and which had apparently been used with some success, BUT that was with children who had never eaten at all, and were still drinking formula as older children instead of eating. My dd's situation was very different. The intervention didn't work for her and it actually made everything worse -- the fall out was HUGE and still resonates to this very day.....but you live and learn. Our current consultant managed to help us sort out the mess we were in and gradually our new tutors broke the whole thing down.

One thing I would say is that the London director, Diane Hayward is imo very good...I could not say the same for the one we have (we are in the midlands). I knew a family who had her and she stayed up all night preparing their case notes for tribunal when she was pregnant!

To answer your question, I would not bother with NHS SALT as ABA should address language issues far more effectively - you will probably find you don't need it.

The 143 nursery rhymes are all the ones I could fit on his mp3 player which he has learnt by heart iyswim. Nursery rhymes is his 'thing'.

Thanks for those co. names.

that's awesome starlight, im glad to hear things are progressing for you, you must be right proud.

I'm based in the Enfield/Essex/Herts boarders (i.e. where they all meet), but my County is Herts.

I'm having a bit of a problem in that my DS is making very good progress atm. I was going to start PECS, but he can now ask for at least 143 different nursery rhymes. However, PECS uses ABA principles and it is these that we have been using 'spontaneously' with ds and it is going very well.

Yesterday when we had a thuderstorm he told us that it was 'raining very very fast'! We taught him fast and slow with his spining things, and then sought out many other things to try and generalise it (i.e. running and flapping, but he came up with the rain thing all by himself. I was and so proud.

electra or *anyone who knows!*- ive done a bit of research and from what im getting back it seems like VB programs place more emphasis on the value/expressive content and the functional content of the language component of ABA thank Lovaas. ie. One of the primary ideas behind Verbal Behavior approach is that the meaning of a word is found in its function and not in the word itself. - would this be a fair assessment of the differences between programs?

if so, to my mind the VB program is offering a more rounded therapy.

Sean is based in Bristol (According to google) - right? Pretty simple trip into London then....

Will contact his org and see if they are available and what timescales are.

New questions on ABA
(i love you people!)

- How does NHS-offered SALT fit in with ABA? Is it something I should contnue on top, or is ABA integrated enough to not need it?

- Is there any other techniques, skills, or programs i should learn prior ot getting ABA started (well- in the interim waiting for it to start)? Eg. PECS has been bandied around a bit on these pages.

thank you everyone for your help. you have saved us hours nad hours of faffing about on the internet and really solidified our positiity for this therapy.

starlight ive got a pack from Peach and waiting to hear from CEIEC and UKYAP - all orgs based in/near London. where are you based?

consulatnt's travel, but of course then you pay a transport cost (Sean'si sfairly reasonable) so it can end up costing more. I guess having someone local-ish would ease that a bit, but tbh, i'd go with who you instinctively feel will suit you/your family best (as in ways of working, thoughts on how to present programme etc)

Do you need to find someone local, or do they all travel?

I agree Sean Rhodes is excellent <waves to Electra>

he has really helped us with a few tricky problmes that dd1 has set us, and is great at thinking outside the box and coming up with novel ways to tackle things.

I'm also pending on yahoo. Who were the providers that you are researching? I suppose I'd better get on with sending off for stuff too. You're spurring me on!

starlight absolutely no offense possibly taken! i agree with you on that one.

pipinjo he is due to start nursery next week as they had a vacancy and considering his circumstances tehy were happy to accept him early.(did i mention im moving house next week? argh!). SO looks like nursery will start before ABA. not ideal? Hmmm. Also - Six weeks from dx letter. I have not yet receieved that letter but will call today as i need it for about 10 dfferent things (dla, autism services in australa, statementing etc. etc.). Not lookng forward ot getting it though. Suspect it will be a teary day

electra thanks for your thoughts, really interesting what you say about the two ABA styles. In my ignorance i thouht it was standard VB across the board, i didnt realise that Lovaas was actually another style of program. functional analysis what what? So that tdbit was invaluable and sending me straight back to the research boards (but to be fair, im still waiting on info packs from 3 providers adn books from amazon). Membership to yahoo group is pending.

must run as have errands to run this morning but will write something a bit more thoughtful in the afternoon.

(hmm. i must change my nickname, i do have a second ds who deserves a mention...)

Hi mum2fred, we've been running a program for just over 4 years for my dd, who is now 7. At the moment she has a mainstream integration arrangement with a local primary school and she's doing really well - I'm so proud of her. There is no doubt in my mind that ABA has been the making of her...

Anyway to answer your questions, I would say decide first of all whether you want a Lovaas style or VB program. We started with Lovaas (UK Young Autism Project) and 18 months later decided to change to VB. One criticism I would have of YAP is that they don't do functional analysis well enough before deciding on an intervention IMO...however that program put in a lot of much needed skills where previously dd had very few at all. She had been non-verbal and within 6 weeks was responding well and requesting items verbally.

We now have Sean Rhodes as our consultant and I think he's excellent - I would not think of changing to anyone else....he's also a very good witness at tribunal which really helps.

Finally I completely agree with those who say keep your son out of LEA provision if you are going to run a program - otherwise it will muddy the waters and you will need to show that ABA alone is responsible for your son's progress.

Have you joined ABA-UK? (the yahoo group)

mum2fred...the dolls house is a first

No serious if money not a prob ( DLA would have been first to pay for ABA).

Nursery starts in Sept? Start ABA now if you can. It took me 6 wks to start ABA from final diagnosis letter of ASD. But this is because ex grandparents were going on hols...so I eventually went ahead as could not wait till Sept and started in June. By time nursery started I had a lot of tantrums under control, toilet trained and most importantly about 10 single words including the name of his teacher considering non verbal when started for two years!

mum2fred No you didn't say 1-2 years. That was me projecting. I didn't mean YOU were nuts, I meant IT was nuts not to have ongoing evaluation iyswim. Sorry, it was very badly worded and I didn't mean any offence.

I'm thinking that length of time for an intensive programme and then continuing less supported. I'm thinking perhaps of trying to arranged part-time school and part-time home-ed when my youngest will be in pre-school (assuming I don't have another etc.)

And don't worry about calling my dd a boy. She deserves it. Shes a right climber, and if I'm honest a bit of an animal.

pipinjo i have avoided looking at ths whole statementing business TBH as it seems to be one of the things people find hardest. right now im focusing on getting ds1 into the right therapy asap. once those balls are rolling i can take on the other stuff. we are lucky enough to have come into a bit of money lately so that we can cover getting things started. Having a look at IPSEA... looks daunting! But dh has a bit of legal experience so might make this one his project.... or in the very least insist that he is involved as I get so lost in those types of documents.

will start. but still have DLA to hand in, nursery to settle him in, ABA sessions to organise sitting in on, ABA assesments to organise, AND start looking at dolls houses ....

also want to tackle nursery as I an to see if they will make an exception for his hours (As i want to spread out ABA a bit more over the week) and also whether they ould be illing to have some of their staff trained in ABA. etc. etc.

Mum2Fred - yes video play, communication, get him to do a puzzle, play with a toy and interact with his ds or a peer. Def video autism behaviours too stim with toys i.e car wheel, hand flapping, obsessive stims (ds used to walk/run in circle of eight)...just put on the record button and it just happens!

ABA is not much different it follows the education circ on what a child should do for their age...VB MAPP it is called now...your ABA provider will have one...I have not seen a complete one but my ds is scoring at a 3yr level which is very good considering 2 yrs (age 2) ago he functioned as an 8 month old. He has been on ABA 2 yrs now, started 70 hrs a week (when I did it for first 6 months, then I went down to 40hrs but this is because I was desperate to get ds to say a word as he was non verbal) I make sure he has it religiously and he has only had two weeks off in the last two years but don't worry if you cant do 40 hrs...two hours a day of intense teaching is very good to start with.

McK it is VITAL you video before ABA starts....it shows how you ds is playing/communicating/interacting/behaviour....get the worst you can get! Then you film every few weeks when on ABA (make sure you film day 1 ABA, you will not believe looking back in a few months the chamges etc that we tend to miss when in the thick of it

Don't worry I have heard of ABA in Aussie to be honest lots of good ABA research has come out of Aussie. I cannot STRESS enough the sooner ABA starts the better, early intervention gives your ds a chance to catch up with peers as the gap can get so big.

Mum2fred I cant tell you what to do...but from my experience and the law...LEAs don't have to give the best provision....so if you agree to do LEA way it will be hard to prove it is ABA as you are doing both together. I did send ds to nursery and paid to get trained the school 1:1 in ABA, so ds was doing ABA at all times....do you really want to waste time on doing an intervention i.e TEACCH that isn't going to work no where near as effectively as ABA? ABA works and if you record it working you have your evidence against LEA. Does your ds have a statement? If not apply for one Monday. Go to IPSEA and see their template letters for applying you have to quote the Ed Act 1996??(yr),(to show you know your law and rights) it takes 26 weeks to get a statement so in that time you could have ABA up and running collecting evidence.

HTH x

starlght did i say 1-2 years? (i cant find it, i probably did). But in my positive way, I I guess I do see this as a long term therapy and that all going well it will go for that period of time probably longer. And i will set it up with that in my mind, However I will no doubt re-evaluate at some point along the way (3-6 months)to make sure it is the right thing for DS1.

sorry about calling your little girl a boy! i think i just assume that everyone in the orld has a little boys. sigh a girl must be lovely.

i know what you mean about DD2 outpacing DS1. Just this morning DS2 started playing the cutest peek-a-boo of his own initiative... somethng DS1 only started a couple of months ago I think that is awesome you are maybe thinging of another kid. I think i would like that too (but im pretty scared about it also), but realistically with this dx it wont happen for a few years until DS1 is in full-time schooling.

that sounds like a good plan wth the ABA also (i tkink - no knowledge here though!). It sounds like a very thoughtful approach and one that should surely present a proper case to the LEA. Will the results of what the LEA offer be meausurable or quantifiable? Do you even know yet what they plan to do with your whopping 1.5 hours a week?

pipinjo i forgot to mention how happy the idea of buying a dolls house has made me!

re: my whole limbo thing. i got 2 emails back from the only two places that offer ABA in my city (1.5 `million population) and both encouraged me to use the UK services if i could

Mum2fred Again, no experience, but if you truly have decided on ABA I would get on with it asap. YOu will benefit from the experience of having got one together in the UK, when you get out there and you'll have more of an idea what and who you are looking for.

I personally think it's a bit nuts to say that you are going to do ABA for 1-2 years. It is much more sensible to say you are going to do it for 3 months or so and re-evaluate.

My DC2 is a DD , and what breaks my heart actually is when I see her achieving milestones faster than my pfb. I don't like it at all because it highlights his problems. I think it is sad for her too, that her older brother is indifferent to her, and it is partly for this reason that we are perhaps thinking of having another.

One piece of advice I have been given, is to look around a couple of ABA schools, not with the intention of attending (no way would we afford it) but to see ABA in practise in a classroom setting, just to get an idea what it can be like.

I was going to ask the question about filming too PipinJo. Do we film them first when they are causing us a lot of frustration?

Also, - my plan 'I think', is to get somekind of baseline assessment (hopefully ABA) at the beginning of September, and then spend a term doing things 'the local authority way' (whilst recruiting). Then have an assessment again in January and begin the ABA programme. Then 3 months later start the tribunal thingy able to demonstrate the difference between the LEA way and ABA way. Do you think this would work?

is that the time?

BAD Mumsnet! BAD!

StarMck - i think we are at similar points to be honest. Perhaps my bravado makes me seem further ahead . But after a week of crying ive decided to be ridiculously positive, be in control and get. things. happening. Whilst I love the ideas in Floortime and think many of the other therapies out there have great potential...

...i think you summed it up perfectly on your other thread on ABA (im a lurker!)

'I want a systematic approach, with clear aims and objectives with measured outcomes and impact, not a random distribution of isolated 'support hours' given by loads of different people with a range of training styles, levels and personal preferences. '

spot on.

keep updating us with how it is going. we can compare war stories

and out of interest - how are you finding hte interaction between your boys? It breaks my heart how much DS2 follows DS1 around and gets nothing....

pipinjo thanks for the positivity and more excellent ideas! it will be a pleasure to film DS1, he is rather cute. Are there specific times/instances which I should try to film? Perhaps in one of his trantrums when we try to get him to stop playing with the toilet-bowl water ? Tee hee. I guess also maybe in his play (pouring sand, pouring water, spreading my clean laundry about the house) and maybe when he counts to ten (two, two, feh,fuh,ive, di-ix, uhnn, aucht, neun, tin!... perhaps he is fluent in german?). Advice taken on the hiring of tutors. A couple of hours ago I did a cheeky email to a couple of people advertsing
on gumtree right now for ABA to see what sort of replies they got... and thankfully the people didnt think me nutty (i heart the ASD community!) and told me how good the results were and how happy they were with the responses and the ABA program in general.
ALSO - pipinjo how long has your DS been doing ABA? s it still full-time? I must applaud you, i often wonder how single mums do it with NT kids, let alone one with SN -i can't imagine how hard it must be, its inspiring.

On a slight aside, what is harddest for me at the moment is that on top of all this research im trying to do, in light of dx, DH nad I have decided to try to move back to Australia as soon as we can to be with family. So im desperately trying to find out what ABA is on offer there (not a whole lot) and am in Limbo as to whether to actually start a program here (ie invest all that £££ now only to have ot do it again in Aus). It is likely that it would take us a year to get back there so it's a real headfark. I dont want to be starting this when he's 4

But, to be honest, im going ahead as though we are not going back because in ths state of limbo, it's the only way i can keep sane.

full steam ahead!

(my local LEA better watch out! come Monday.... they ont know what has [nicely at this point] hit them!

I got a tutor with no ABA experience, she is now finishing her MSc in ABA and on par passoniante about curing ds as I am!!!

The other tutor had 8 years experience of ABA from America! She was fab too...try to stay away from students ...I have found they dont stay long)

One piece of advice...video sessions...you will need this for evidence at tribunal. I videod ds before ABA started and every three weeks for 10 months and I had an excellant visual evidence that the tribunal saw...seeing is beleiving....everyone cries at this it is phen(sp)olical the improvements once you start ABA you can't stop as the changes are...phew!

StarMcK it is hard with a 10 month old....but it will only get harder the longer ds goes without early intervention. Don't be frightened of tribunal...I did it, single mum, gave up my job to do it all.....it's so rewarding

Sorry, I meant to say, I can't help a lot from an experience point of view, but I can hand hold

I've already been told that ABA in my authority never gets funded, which is a lie, it does, but never without tribunal.

mum2fred I think you are a little bit further along than me but we are looking into ABA. It's just so time consuming isn't it? Doing the research etc. I've been chasing the local authority first.

You might remember I have an almost 10month old too. All this is blimin hard work!

sickof That was a really helpful post for me. I would hate to pull DS out of the morning groups he attends because for a boy with autism he isn't too bad in social situations (been going to between 4-6 toddler groups a week since he was born) and I would hate for him to lose them.

thanks pipinjo. that is all really helpful advice.

sadly my ds doesnt really seem to have many reinforcers. His Panda teddy and his evening bottle of milk are the two things he loves above all else, but i couldnt imagine using them as a 'reward' as they are sort of emotional trasitional things he has had since birth... only other thing would be popcorn and a dinosaur dvd. Actually, they would probably be great.

OK. I just typed out an internal monologue. Apologies.

I have a lot of those sorts of toys, sadly he is uninterested in most of them. Yes also to a space set aside with table nad chairs for him.

I would like to take on a few sessions myself as I know DH would also over the weekends. We do have a DS2 (10months) so will definately have to hire. We live a suburb away from a big london colledge which has a psychology department so was thinking that that was a place to look. I have used gumtree to find a nanny in hte past and found that 90% of responses were crap.(that being said, i did find someone great) pipinjo Did you get a few quality responses?.

Hmmmm.... i guess that lovely paperchase a4 box i bought (shoebox size) ain't going to cut it...... might have to get DH to pillage his office!

statementing.... LEA funding.... Only got unexpected dx a few weeks ago...have not looked into this too much. seems to me from lurking on other threads it is a bit of a nightmare... which is why e just wanted to get it started...and cross our fingers....

PS yes printer, laminator (only just started that though after 2 years) A4 files, poly pockets and dividers a must

MumofFred...take one step at a time....I'd start the ABA first...most are the same price PEACH and UKYAP. Join ABA Yahoo site. Agree with SSOE start fish oil I use Eye Q liquid The gluten diet can come later if too much. Any amount of ABA time is better than none! Do you have lots of puzzles, art stuff, blocks, playdough etc to start off...get to the pound shop and every toy he has keep and he will be taught to play with them correctly. I remember the H.V. saying to get rid of ds toys...I sold all his 'button' toys as ds stim on them. I was told they would have been perfect for teaching him to play appropriately with after by the ABA consultant. A doll's house has been huge learning for ds for example

Do you have a spare room...or a room with some space to do ABA in? You need table and chairs I got ds at IKEA for £20! Lasted him 2 years. Find reinforcers (something your ds will do anything for ie sweets, fav dvd etc and remove this for at least 2 weeks before starting ABA...builds up the motivation for your ds to want to get that sweet/toy/dvd etc.

Are you going to do it yourself or employ tutors? I found gumtree the best place to find tutors. You will have to have your rules made ready before they come into house i.e no mobile phhones on in session, will you supply drinks/snacks etc for staff. Punctual/absences/pay/holiday leave/probation and crb are vital (unless your not leaving your ds) then requesting LEA to fund it! That's the hard part in most LEAs.Is your son statemented?

Starting ABA before the LEA funds it gives a chance to show it is working, hence harder to not lose in getting it.

thanks sickof. that is exactly what i wanted. it is so hard to decide how to go forward, having the opinions of people a few steps ahead is invaluable. but it def seems that ABA is effective for most people and we want to see some results. but so many of the other therapies seem like good ideas, it has been a hard decsion. im a bit nervous as hte nursery only does full days (half day not an option) so it is looking like 2 days of nursery - 9 to 4 - and then 3 full on days of ABA (plus some over weekend).... not really ideal ratio for his week, would prefer if it was a bit more spread out over the week.

had not considered fish oil (in fact have not looked at diet at this point at all. think that a lot of people do gluten-free? Ohhhh this list of things to do is ENDLESS!)

am i going to have to buy a laminator and printer?

There is a chap called Duncan Fennemore who you could google as I think he has his own ABA company. He is in London and might be able to a) run an initial "getting to know ABA " session with you or maybe even b) recommend a supervisor to you. You may though have to go on sites like the ABA/VB community or the AWARES noticeboard and recruit your own tutors. The tutors can work alongside nursery, yes. Don't let anyone put you off by saying you have to do 40 hours a week or anything like that, there is a lot of mythology around ABA. My DS at your DS's age did am's in nursery and pm's with ABA tutors (so only 15 hours ABA per week) but it worked really really well. You are doing the right thing - no doubt in my mind, and I have tried TEACCH as well, plus SALT, plus OT. The only other thing I would definitely do at your DS's age is give fish oil for his developing brain. And use EVERY opportunity to get him to vocalise "you want what, you want ch....chocolate, that's right" etc. The other way of recruiting tutors is that once you have one on board, get onto a nanny website and train someone up by shadowing the first one. It is hard to get going, but it is SO worth it.

OK. There seems to be a consensus on here that ABA is a really effective way to go and dh and I really want to get a program started (ds1 2.5 ASD). Just wasted an hour trying to source good info on it (should have just stayed on MN!)

So far I have had a good look at PEACH and requested an info pack.

Does anyone else know of an organisation/ case manager / consultant that works from central or South London? Personal recommendations would be adored.

ALSO

We have miraculously managed to get DS into a very nice local nursey for 2 days a week (as his socialisation sits on zero) and would like to keep him in that. Would ABA be able to work around that - ie. is is possible/ effective to do it part-time over 3 days a week?

ALSO

how long will it take me (if i push hard) to get a program up and running?

Any other thoughts, links or first-hand experiences with ABA would be appreciated.

Phew! Thanking you in advance.....