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?

not that i've found so far, sickof. but you can book them to come and see you if they are travellign for a conf or similar - or club together with other familes and share travel costs (but hotel costs need ot be met etc).

it was really very good for us (and the dds) - has really calmed down a lot of stuff, and given us a lot to work with. you've seen dd2 in screaming, wailing action (when she couldn't find her hairband - and that was just the tip of the iceberg!) - and the effect on normally calm and stable dd1 - something had ot give! and thankfully, we are working through that now (the problem we always had when getting eg ABA cons in, was that the dds woudl behave beautifully because someone else was there - a bit like when we were round at oyurs - I have never seen them go so long without shrieking at each other ), but the setup over there got round htis, as they could forget anyon was watching, as they were in a different room...

Slinky - wow you have a university thesis just from this thread alone.

Can I just return to your opening oint about how the non-ABA camp would let the autistic kid keep their "little quirks", rather than trying to change them.

Can I just list out the "little quirks" that the TEACCH system would have happily let my DS grow into adulthood retaining?

• Biting everyone he met
• Headbutting any adult who didn't immediately please him and got too close

- Spending 16 hours a day running the tap, putting the plug in , flooding the bathroom

• When not engaged in the flooding activities, spending rest of day jumping up and down on the spot saying "eeeeeeeeeeeeeeeeeeee oooooooooooooooooooo aaaaaaaaaaaaaaaa" while flapping hands and gurning many different facial expressions
• Refusing to walk one step down the road without throwing a mammoth tantrum, such that neighbours would think a crime was taking place
• Saying not one single word, expecting everyone to know what he wanted immediately and throwing screaming tantrum/fit if they didn't
• Never looking at any person, or any thing or any toy
• If stopped from above flooding and eeeeeeaaaaaing activities, lining up toys for hours, and throwing screaming, tantrum/fit if a single toy fell out of place
• Taking no notice of any other child or adult in environment, finding more interest in the banging of one part of a toy endlessly against another
• Bouncing or climbing on any surface, however unstable or dangerous
• Being impossible to take out in public anywhere, due to all of the above
• Being oblivious to any danger - quite happy to run out in front of a juggernaut if not held at every moment
• No sign of toilet -training, no hope of reading or writing
• Unable to get self to sleep, unsafe if awake in the house while others asleep for even one second
• Behaving, essentially , like a new born baby in a rapidly-growing boy's body. Heading for an institutionalised and probably heavily medicated life, as became bigger and more difficult to control.

And the anti-lobby call ME cruel, for wanting a little more for my boy than the list above!!!

I've been reading this thread with interest and so much of it rings so true to what I am currently facing.

Post statement, I've had to drag these 'experts' in kicking and screaming to offer the provision DS is entitled to, only to find it consists of people, including S&LT, attending school, not bothering to meet DS and then throwing a load of generic and potentially detrimental targets and strategies at us.

I agree though the ASD team were even worse. Clearly, not interested in talking to me, more interested in talking to teachers about what their needs were. It's all about children being 'managed' and not causing anyone a problem. If parents start demanding evidence of actual interventions and outcomes, everyone starts feeling sorry for themselves as if the individual parent talking on the NHS and LA is actually the bully in this weird fucked up world scenario.

I asked our S&LT about ABA and they gave the usual 'it's no better than dog training' type response. This form a S$LT who couldn't remember what A-B-A stood for.

So we get offered a discharge first (we don't deal with ASD children), then 3 yearly visits, now 6 but S&LT team (there were two of them) come in to school, don't even speak to DS but send a load of crap strategies in the post.

The thing is they took great offence at my objecting to them setting out a programme for him without actually meeting him, with the head of the team actually telling me that there were 'many different forms of assessments' including talking to staff etc. I'm sorry but meeting the bleeding child has to be a starting point.

So. what am I fighting for when I'm appealing to a Tribunal for increased S&LT out of this rubbish service - yes I know, undoubtedly over stretched and under-resourced but still RUBBISH? I'm not sure. The problem is that if your child goes to school, even if you 'train' yourself, the child is at school with teachers/TAs who don't understand the issues and feel obliged to follow the useless advice offered by the useless experts you've fought so hard to get involved.

I've made a FOI application for evidence of involvement with children like DS. If they're going to tell me what type of intervention they think is best, I'd like evidence that they are able to measure outcomes and have experience of offering direct and indirect therapy. I know they won't have as they discharge all children with ASD.

Where this leaves me - I don't know?

Am back after a mammoth commute home..

Moondog, in one of my settings I am doing mass training + push in support as you are doing.. but I do find that the struggle is developing even a vague awareness of language and communication (again, secondary). The teachers are pretty keen, mainstream (with a unit for lang and comm) but it is ALL so new to them. They don't get the basics e.g. have the faintest notion what "understanding" is so we are a little bit off organising ourselves as you have done. This year, I have been focusing on developing awareness and understanding of the issues with the teaching staff - how to recognise someone having an issue, how to refer them etc - combined with push-in support for the 1:1's in class...

but I'll be honest, it's not always easy to know what to do or where to go with it all.

At secondary level (do I remember you have kids of this age?), the vocabulary/task demands are so dense and some of the kids are just so needy.. e.g. I've been providing push-in support in a English class for "low ability" kids where they've been learning about genre/film shots/atmosphere etc. One of the kids has extremely severe SLI, another has HFA, about 7 have MLD. That's about 40% total of the class. My work has been two fold- with the class teacher and the supports. With the CT, I've been doing some training around key words/concepts are and making adjustments to his teaching e.g. emphasising/demonstrating highlighting the key words, getting the kids to look it up in a cobuild dictionary, getting them to come up with their own meaningful definitions, giving some sort of indicaton of expectations at the start of the lesson that are followed through on so that kids have some sort of idea of what the hell is going on (I was having trouble following in the first few lessons...) etc. The kids all self-assess their knowledge of the key words at the beginning and at the end of the lesson - naming it (with phonological support where needed), defining it, drawing it, using it in a sentence, categorising it etc and then again at the end of the lesson, they are doing flashcards etc which are reused as the topic progresses. The 1:1's are supporting paragraph plans and the POWER strategy - plan, organise, write, edit and rewrite - to give structure to planning and working on extended written narrative.. Next is Blank questions.. developing awareness of the verbal reasoning demands in the class.. The teaching structure is to assess the words, students to guess, brief exposure to meaning/sound/something about the word, then onto the teaching for the day, word-related activities, whatever teaching activities the teacher has planned (with paragraph supports/dictionary and active listening strategies embedded) and then review. The students with IEPs have specific targets related to their use of strategies with defined prompt levels and success graded 1-4 on pre-defined criteria.

The bit I don't get, in terms of this kind of work/, is how you reach any sort of critical mass in terms of fluency... the vocabulary just keeps coming, the tasks change daily, the teachers chop and change plans.. there are maybe 30-50 new words every lesson so all we can focus on is a few at a time. I get that the point, here, is to track use of the strategies.. are they going for the dictionary unaided, can they do their own paragraph plan etc.. and there are students for whom this is feasible. But when you're dealing with a 14 year old who has telegrammatic speech, even when he is FANTASTIC at taking on these strategies and some of them are working for him functionally, it is woefully inadequate. He needs hours and hours of therapy to make any sort of appreciable difference - therapy on ALL SORTS of language and communication functions/behaviours - and he doesn't have a statement, his family seem to have the same language difficulties etc and there's no 1:1 available, so, because of resourcing, THIS is all he gets - how to use a dictionary and plan a paragraph? It makes my eyes bleed to even write it.

What do you do? I understand what you are saying about PT etc but I don't know what else is possible in an hour every fortnight. I am supposedly blessed with my caseload and a committed school and yada yada yada but in real terms, it's like the loaves and the fishes. 9 kids, one hour a fortnight plus twilight sessions. The benefit of my set up is that this at least is open-ended - I can go in every fortnight for the entire year to train and consolidate training etc.. but there's just so much I would like to do. In terms of the strategies that are being used, they are being effectively modelled and they will be embedded by the end of this year in some classes.. but at secondary it feels never-bloody-ending. There are another 14 teachers that these students meet on a weekly basis. 14. One hour a fortnight.

I'll be brutally honest and say that I find that many of the secondary teachers I work with just.. don't care. It is very different to primary. They really seem not to believe that inclusion is their role..

So my real task is not how to motivate the kids (who are crying out for support and just love it when they get it) but the teachers.. I well want teachers to take responsibility for including kids with SEN and engaging meaningfully with good teaching practices (which will work for all kids, not just SEN ones!) so that these kids could maybe - shock, horror - have some time to focus on non-national curriculum based language/communication targets. A broad and balanced curriculum and all of that.

I want to see the way. I really struggle in that sometimes I feel like my brain is just going to FRY from trying to work out a cohesive, systematic way of attacking these issues.. the whole system needs to be thrown out and started again, and I agree that if you got the teachin right it would make ONE HELL of a lot of difference. It just feels uphill sometimes.. even at this side of the fence

Hehe Silver.
Maybe Ii am mellowing in my old age?
I do try not to be so forthright on SN. It doesn't feel appropriate but i do let rip elsewhere (what's the point of us all patting each other on the head and agreeing?)

Son-Rise. Well, I don't know anything about it really as it is hard to get any information on outcomes (apart from promotional blurb) from their website.

But, as justabout intimates, a behavioural approach can be applied (hence the acronym ABA) to just about anything and by doing so, it will, by definition, work. I can be quite fond of hippy dippy touchy feely stuff myself you know! I also am really keen on martial arts for kids with communication disorder. The pace, structure, co-operation and discipline have benefitted my kids enormously and I would recommend most strongly to people who want their children to be co-operating ,attending and generally joining in more.

9-5, yes, it's an impossible task. My take is that the curriculum is too crowded-people doing too many things badly and not focussing on a core set of skills well. With kids like yours, do things like film genres really matter?

I am interested in helping kids to have good daily living skills (can dress, wash, cook for themselves, able to tell the time, know what day/month/year it is, able to review the past and plan the future and so on).
Also who are literate, numerate, considerate of others and able to socialise and who do lots of sport.

The rest. Who cares frankly?

'The problem is that if your child goes to school, even if you 'train' yourself, the child is at school with teachers/TAs who don't understand the issues and feel obliged to follow the useless advice offered by the useless experts you've fought so hard to get involved.'

Bingo

I'm not particuilarly pushed if they know x or y vocab. I do want them to be able to participate and be included. Most of these kids can do basic living skills, shop, cook, travel.. But they can't spend all day out of class and they will spend thousands of hours of schooling confronted with literate language, will be expected to talk about abstract ideas etc - and are in a position to gain qualifications. My job is to maximise their potential and alongside social skills etc, having literate language, extended narrative skills, persuasive writing, the ability to talk about the curriculum vocab IS functional in a secondaru school environment. 4 hours a day of sitting in a classroom unable to engage in the language around you is no good. I can't disapply them from the curriculum even if I wholeheartedly agree it is nonsense.

Oh - I feel like making that quote

'The problem is that if your child goes to school, even if you 'train' yourself, the child is at school with teachers/TAs who don't understand the issues and feel obliged to follow the useless advice offered by the useless experts you've fought so hard to get involved.'

my email signature when I next email the HT !

I sometimes love to list the ineffective words:

referral
liaison
support
investigate
search
look into
observe
write a report
have a telephone conference

All these things occur daily with regards to my ds I'm told and I should be bloody grateful. Haven't seen the effect any of it has had on him, but that is, of course, because I'm blind!

Don't forget the scariest words of all

Eclectic provision

even worse than "eclectic provision" or "multi-disciplinary appraoch", imo, is "fully-rounded approach" - not only do they clearly not have a clue as to what they are going to do to help your child, but either: cannot understand or use the words eclectic or multi-disciplinary themselves, or believe that you cannot.... my heart sinks at that point, as I realise what a fruitless waste of time it has all been...

moondog: yep, I get you. But I do think that opinions should be shared and aired. how many times do we get parents looking for recommnedations? and discussing, even challenging, perspectives on interventions is never a bad thing - some of the best threads on SN have come out of this, imo.

Re: SOn-Rise, I totally agree - it is impossible to find any proper info on it. For that reason alone I wouldn't touch it with a barge pole as a full-on approach. But there were a few interesting things GM had to say about it.

The hippy-dippy touchy feely stuff was what we were after (not in a SOn Rise way, but in a general family harmony way), and is exactly what we got. I had stalled massively after our (non) Tribunal win, and was stuck in fightng mode with nothing to fight. dh was stuck in "oh shit, really not sure what to do" mode, and it has totally reset us. the silverfrog household is (for now, and I am sure it will not last forever) at peace, which makes a change after 4 years of pushing and fighting and being denied services.

Lenin, sorry to be a pessimist, but don't expect the nhs ot step up too much - especially for the sort of stuff you want from them.

I have just had one of the nicest days with my 2 - it had it's ups and downs, like any school holiday with 2 small children will, but overall, my feeling is one of happiness and achievement.

I did some planting of seeds with both girls (form crappy kits that will like as not fail to grow ), and dd2 was an angel throughout- hugely excited, massively involved. very interested in it all - last itme we tried this, we had meltdowns at the thoguht of getting her hands dirty, meltdowns because somethig or other was done in the worng order, meltdowns because she couldn't take turns with dd1 - you get the picture.

today, she happily mulched up the compost, patte dit all down, shoved the seeds in, helped me get the watering can filled up and watered the plants (didn't mind when she got sprinkled a bit ), and best of all, come bedtime, she came trotting out after lights out and gave me an extra big hug and said "thank you for doign gardening today mummy"

and all this because of the attitude reset we got last week (both her and our (dh and my) attitudes, btw.)

Lenin. Like you we're frustrated parents, and we use MN to vent and whinge.

It's hard work for sure, unfairly so, but the outlook isn't hopeless despite what it might look like. Knowledge is power and key. Yes, we have to fight for what other children without disabilities are entitled to with no fight, but it's a fight worth having and it does pay off.

Team around the child, means just that, - literally!

I would prefer, Team directed AT the child, personally!

It's coz I told all Moondog's friends that I'm a bit scared of her