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Massive curveball - ABA consultant thinks we can stop programme (long, sorry)

(27 Posts)
bialystockandbloom Fri 14-Oct-11 20:15:05

I'm a bit in shock. Had workshop today with our consultant - he hasn't seen ds for a few months. Went to observe at school (Reception). Reported that ds was almost indistinguishable from his peers in most ways, and that we can fade out our school shadows by Christmas, and probably finish the (VB) programme too, maybe with the odd session here and there. I was anticipating at least another year of school shadowing, maybe even till the end of Y1.

He thinks that ds would not now get a dx of ASD (he never really thought ds should have been dx with that in the first place - thought it was a developmental delay/atypical rather than autism), and probably wouldn't now get a statement. Thinks that we should now be treating ds pretty much 'normally' to most extents.

Sounds positive doesn't it.

But a) I don't fully agree, as ds still has some real problems with social communication, anxiety, obsessions, and some perseverative behaviour, and b) we have just submitted our appeal to tribunal to ask for a full ABA programme!

Over the past few months I have been hugely bogged down in our statement/appeal, starting school, and recruiting new tutors, so probably can't see it too clearly. I accept that ds has made amazing progress, and yes in many ways does seem nt but just a bit 'quirky'. But I also see how, for example, how different his conversations are from his nt peers (eg asking dd today "dd are you scared of the bin?")

Just don't know what to do. Am I just scared of going it alone, after coming to see our tutors as quasi-saviours (how would we do without them?)? Looking for negatives in ds, and treating him like a developmental case study rather than a child?

Or is it that the consultant needs to spend more time with ds to see the difficulties that he still has?

Or is it simply that we don't need to spend more money on tutors, as he is learning most skills naturally now, and what he doesn't learn on his own, we, his parents, can teach him?

Should I get a second opinion? Our consultant is leading in his field (VB) but I think possibly more skilled with younger children (ds is 4.6), and maybe ones who are less hf.

Can anyone recommend a VB consultant who could advise us?

Also wtf do we do about our tribunal? I feel like it's a sham if we ask for a full progrmame when our consultant thinks that we don't need it. hmm

Sorry this is soooo long. Aaaargggghhhh.

MangoMonster Fri 14-Oct-11 20:20:03

Most consultants will give you reccomendations and an initial assessment for free, but obviously they want your business. What about seeing how he does on what the consultant has recommended and then re-evaluating after 8- 12 weeks. Have you discussed your concerns in depth with the current consultant?

smallwhitecat Fri 14-Oct-11 20:45:34

Message withdrawn

justaboutstillhere Fri 14-Oct-11 20:47:02

Message withdrawn at poster's request.

bialystockandbloom Fri 14-Oct-11 20:59:33

smallwhitecat yes I agree about frequency of visits. We obviously have seen our supervisor much more frequently. Had a hiccup over the summer due to tutors leaving/recruiting new ones, hence the gap in seeing him. But up till now I have felt he 'got' ds, and always had an accurate understanding. His initials are DF - you probably know who I mean.

justa "he may be meaning not that DS is completely "fixed" but that it is coming up to the time where you have to hunker down for the longterm, tweaking here and here, helping him socially to fit in, using the skills you have gained etc." Yes that is a good summary. I suppose I didn't think that day would be sprung upon me so soon, or so out of the blue. And you are absolutely right about having too much help rather than too little.

Ds tells the tutors he doesn't want them to be there - the consultant read this as ds not wanting/needing their help. I read it as demand avoidance from ds - he knows he has to 'work' when they're around grin

I just can't work out if I am seeing ds objectively. or not. One of our tutors agrees with consultant. The other sees his point but also sees more of the difficulties that I see - she has been with us since the start of the programme so I trust her judgement.

I also don't want to abandon our tribunal if in a year's time we have to go back to ABA after all. I suppose an appeal might at least give us the chance of a decent statment though, in any case (our current one is woolly rubbish).

oodlesofdoodles Fri 14-Oct-11 21:10:37

bialy you gave me some great tips on how to manage a playdate a few weeks ago (it went well thanks). It sounds like you've been working really hard and your dc is making fantastic progress.
My DS is ages with yours and also pretty borderline/hfa. We're not doing any shadowing and I worry that we aren't putting enough effort in. But our consultant seems to think that low level ABA from us parents and from (his fab) nursery school is enough. I don't know whether that's partly because she thinks we can't afford a more intensive programme.
If you take your shadows/tutors out of the equation, what support does your DS have at school?

StarlightMcKenzie Fri 14-Oct-11 21:17:46

bialy What I would do in your case is get a good EP and a good SALT to assess his social communication levels.

Then I would consider that if he truly is 'indistinguishable' (congratulations btw) then is that because of all the support that he has holding him up, and if it is removed will he fall?

You need to bear in mind too, that even the leading names in the UK are far far behind those in the US, and generally they focus on the early developmental skills rather than the higher level social interaction/communication. IMO many just don't have that expertise, even the ones with the good reputations.

I also think (sorry) that some of the 'famous' Consultants have got lazy. They were good in their field when they started out, got the reputation, got the work, stopped the learning. Many can make a mint setting up generic programmes to teach colours and shapes so why put the effort to teach to individual social difficulties with all that that can entail i.e. video-modelling, social skills groups, pair work and the difficulties associated with finding a pair etc etc.

I would certainly get a second opinion at the very least, perhaps with someone that is used to dealing with older children, and therefore more complex social relationship work.

justaboutstillhere Fri 14-Oct-11 21:18:32

Message withdrawn at poster's request.

bialystockandbloom Fri 14-Oct-11 21:21:32

oodles thanks for your reply. Yes I remember your thread, glad to hear the playdate went well.

Interesting to hear you're in a similar boat. In many ways I can see that ds can cope without a school shadow. He has brilliant imitation, learns from peers, very sociable, etc. But despite the progress made on social communication and playskills, I do still worry about what would happen if he was on his own.

As it stands, his statement says 25 hours a week but doens't specify of what - ie doesn't specify 1:1, just things like "access to enhanced adult support", etc. The school (which we chose because we thought it was the best one) have slightly backtracked on support, and the headmaster has said "oh well 25 hours on a statement doesn't actually mean 25 hours of support" hmm

So we don't really know what he would have without our tutors going in. Which is partly why we're appealing the statement, as it is so vague.

StarlightMcKenzie Fri 14-Oct-11 21:21:49

Agree with Justa.

Perhaps the 'look' of the programme might need to change/adapt/update with your ds' needs. EIBI is only one form of ABA, but given that ABA can help pretty much anyone improve their deficit areas it just seems a little odd that your consultant has suggested it stop. We can't afford it, but if we could I'd probably be doing some ABA with my dd.

bialystockandbloom Fri 14-Oct-11 21:25:42

x-posts with you both there.

Yes you are both right. Our consultant is certainly expert in very early intervention, but I have heard he's not the best at older children. So yes, it may well be that it is simply he, rather than aba, who can't do anything more.

I definitely want a second opinion. Any recommendations?? Any knowledge of Sean Rhodes from anyone?

bialystockandbloom Fri 14-Oct-11 21:29:08

Oh and star yes we've recently had a SALT assessment and have ind EP coming up (both for tribunal purposes). Consultant has said let's wait till they come in before making a decision.

StarlightMcKenzie Fri 14-Oct-11 21:31:21


personally, I would stay away from the bigwigs and chose a lesser known consultant that is used to 'working' for their money.

I would also suggest that if your ds is going to have 25 hours of support it 'may as well' be 25 hours of ABA type support as you know that his is the most effective.

JamMac Fri 14-Oct-11 22:03:36

Hi. I have been confronting somewhat similar issue: school says ABA can be terminated (although consultant does not agree). Our DS has many strengths, but a bit quirky and language still not quite there. I found this blog from BCBA in which she considers why a consultant might terminate an ABA programme. Very good summary of considerations.

The founders of the US provider, Autism Partnership, have just come out with a book called Crafting Connections. It contains a curriculum for social programmes that they use in their practice. If you look at the TOC on Amazon you could see what type of programmes you might get with a provider that does a social skills/advanced interactions. You might be interested in finding a provider that could offer you these types of programmes as you do have a Statement. Obv. could look at Autism Partnership UK or UK YAP who do quite a bit of social skills and school shadowing too. Good luck!

maryellenwalton Fri 14-Oct-11 22:16:21

I definitely agree with Star that some of the big names have become lazy. They trade on their reputation and know that they have clients coming out of their ears, so they don't invest in each child or get to know them in the way they should.

The major players often have literally hundreds of children on their books, both here and abroad, and without doubt spread themselves way too thin.

We steered well away from the Names, and chose to go with a consultant who insisted in being very closely involved with each child (seeing them every 4 weeks at least) and who limited herself to 10 or so children at any one time.

bialystockandbloom Fri 14-Oct-11 22:28:14

Hmm. Yes. So how do I go about finding a new consultant. I'd welcome any personal recommendations - please do pm me!

JamMac that is really useful, thank you.

And how will this affect our tribunal? <<rhetorical>>

PipinJo Fri 14-Oct-11 22:32:17

Message withdrawn at poster's request.

bialystockandbloom Fri 14-Oct-11 23:30:41

Thanks pip

Yes, I am absolutely ready to have another consultant to give their opinion. Have had some great suggestions here, thank you all.

My gut feeling is that ds is not ready to cope in ms school with no support. Whether that is a full-time aba programme is debatable - tbh I have always felt a bit of a fraud going for this at tribunal but told myself that at the very least we might secure a better statement, even if not a full aba programme. I still feel that that is the best thing to aim for.

So hard to know who to turn to! Our consultant was brilliant to start, and has such a good reputation, and I know of other families who rave about him. But perhaps just isn't the best for my ds.

You are absolutely spot-on about the Fear of Stopping.

If you wouldn't mind telling me who your consultant is I would be extremely grateful - pm if don't want to say on the main board. Thanks again smile

Jaxx Sat 15-Oct-11 01:27:44

My son is 5.10 in Y1 with HFA. We share a consultant, who we also saw for a workshop this week. I have found him to be over-optimistic at times (not helped by my son adoring him and often over-performing when he is around), but overall I have no complaints.

We have been running a programme part-time for coming up for 2 years and DF started talking about us being able to finish soon about 6 months in! Don't panic.

When we initially started the programme, the primary aim was to improve his speech. He was last formally assessed in July and scored towards the top end of the normal range, so essentially job done. He does need more work on the social side, he enjoys playing with his peers but needs a bit of a push towards doing so or else he reverts to solitary, repetitive play. Academically he is doing really well, but needs a firm hand to keep him on track.

I hate the idea of stopping ABA. His school don't always recognise his problems as he doesn't distract other pupils and the termly visits from the SALT have largely been a waste of time, except when I badger them into formally assessing him. Put simply I don't trust them to not muck up all our hard work.

His needs though have clearly reduced so what we have done is scaled right back since the start of Y1, in a model I hope to keep for the next year or so. We have a tutor in school (and afterwards at home) for 2 afternoons a week, who plans social skills sessions to be carried out by the LSA (we have 12.5 hours LSA time per week via his statement), observes him in school and makes sure the IEP targets are relevant. The tutor has been with us from the start and is excellent. We have cut out supervision, but will have termly, half-day workshops with the consultant. It is early days, but we are hopeful that this model will work. If nothing else, having a tutor in school gives us an early warning system for if things stop going really well.

It is easier said than done, but please don't worry too much. Wait until the reports come in and reassess then. If you think the consultant is wrong, let him know either directly or via your supervisor (ours was very good and reigning DF in a bit). Remember it doesn't have to be all or nothing.

I'm not sure what to advise about the tribunal though.

StarlightMcKenzie Sat 15-Oct-11 09:59:32

'at the very least we might secure a better statement'

Yes. I'm getting the impression that tribunal is the 'normal' path to vaguely adequate provision. It used to be that getting a statement was enough, but now LA's are so good at the weasel wording that the only way to sort it out is through the tribunal process.

Overall, LA's must save themselves a bomb but forcing parents to tribunal because of the message it sends other parents who give up.

squidworth Sat 15-Oct-11 11:50:02

Although I never used ABA for my eldest DS I did use a very strict programme with him in language, reading and writing and these he learnt from me and not school. When I used ABA for youngest the three tutors used described my teaching and certain parenting techniques as ABA like. Back to the eldest he needed this extra tuition till he was 8 as breaks such as holidays / illness always led to more than a few steps backward. He has a dx (given when 4) of autism and LD, he is now in secondary and on the gifted register. I ceased his statement when he went to juniors as by then he hated anything that made him different. Continuing ABA for me would be less harmful (except on the bank balance) than stopping to early.

bialystockandbloom Sat 15-Oct-11 16:35:18

Thanks all, some really useful advice. The more I think about it the more I think ds is not ready to stop ABA. Whether he needs it full-time in school is, I suppose, debatable. It's so hard when I don't see him there - all I see is what he's like after school, how his behaviour has deteriorated since starting school - which cons puts down to tiredness.

Thank you all for the recommendations.

jaxx your post is extremely helpful, thank you. I wonder if DF is overloaded and trying to shake off some of his 'easier' clients?! Who is your supervisor (initials fine obv if you don't want to say in full)? Your model sounds like it could work really well. I suppose I'm wondering now if there might be a consultant/provider who is more suitable for ds's needs - perhaps DF is more expert in early childhood. He was briliant on the acquisition of language/conversation side, but I do find that his expectations of ds now are lower than I would like - eg what I think is inappropriate, he thinks is fine in some areas.

I have found him to be over-optimistic at times (not helped by my son adoring him and often over-performing when he is around) absolutely ditto

Your description of ds is so similar to mine. I have the same concern about school. Even just a few weeks in, the class teacher says he's brilliant, but I wonder if that just means "not disruptive and doesn't seem that autistic". There are kids in the class with more obvious and demanding needs, so ds could slip through the net not causing trouble, but not learning anything, and having all the wrong stuff reinforced.

I'd be interested to hear how your new programme structure works.

The tribunal thing is a tough one though, the timing is dreadful! If I knew that the LA would give us a better (ie specific) statement even without ABA, I would drop the tribunal. But it's a game of bluff isn't it.

Yes I will try and calm down a bit, take a step back and wait till the reports come in.

<<and breathe>>

sickofsocalledexperts Sat 15-Oct-11 17:17:11

It is a tricky one Bialy, but I'll just throw this one thought in to the pot:

My HF ASD step-daughter never had ABA, just an ordinary LSA throughout primary, but a rather good one. She is now in secondary with no LSA.

The thing is that I think it was the very normality of her school life that means she is now virtually indistinguishable from her nf classmates, and due to get As in 10 GCSEs.

She was thrown into "normal" life, and had to learn about it without any artificial help, iyswim. She wanted desperately to fit in,and that gave her the impetus to learn the new rules of nf life.

Now I am the biggest proponent of ABA for my far less high-functioning DS. Without it, he would be way way way more severe than he is today.

But if a consultant had ever said to me - 'he can cope alone in school', I'd have jumped the chance to see if he could "fly solo".

It's a nf world out there - the more he learns to deal with the normal world, the better?

bialystockandbloom Sat 15-Oct-11 19:02:45

sickof thanks, that is interesting to hear. I suppose part of my reasoning is that (despite being hf and atypical in many ways) ds still needs a different kind of motivation to engage in some aspects of the curriculum. And we have yet to get to more demanding parts of school - the first term in reception is hardly that different from nursery really, so I can't envisage how he would be motivated to learn without ABA when it comes to the more academic curriculum.

But I do agree that if a child wants to fit in, and learns well from peers, then it would be detrimental to mark them out by a tutor trailing after them everywhere they go (as you know it's not like that anyway, but ykwim). In fact part of the consultant's reason was that ds tells the tutors he doesn't want them to be with him. The cons thought it was that he is already aware it marks him out, and just wants to get on with it on his own. I agree to some extent, but I suspect part of it is demand avoidance, as he knows they'll make him work wink

Jaxx Sun 16-Oct-11 13:04:29

Our supervisor is AD.

I'm not sure if DF is trying to shake off his easier cases, or if he just remembers what we initially wanted out of the programme. I spoke to a parent at the start of a ABA/VB programme recently giving our tutor a reference. He was really pleased that our programme was winding down as I think he wanted to see there would/could be and end to it all. Although I was probably similar at the start of the process, having seen the brilliant results ABA can give, I freely admit I never want it to stop, at least not while there are still incremental benefits.

We never had full shadowing at school though. With hindsight this was a mistake. It was following DF's recommendation, because our son was really attached to one of his tutors and he didn't want to interact with anyone else when she was in school. We had school LSA's, but they just don't get it. I do regret not hiring tutors specifically for school shadowing as his social development has lagged his language development.

I do think you are right to have concerns about mainstream primary schools. We were also told our son was doing brilliantly, only to later find out he spent much of his day on the same two or three activities, usually on his own. He was very resistant to the more structured activities available - but that was OK according to his schools interpretation of the EYFS. I think the teacher didn't see the problems as he was in the classroom with the children wanting to engage, whilst my son was outside either doing circuits or playing buses/trains on his own. We had to fight hard to get some strucutre in his day and the social skills gorups and things did improve, but he really didn't get much out of the first half of reception.

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