ADOS Results Meeting - no professionals involved have heard of ABA....

[PoopyFingers]

Can anyone give me guidance on the results meeting for ADOS?

DS1 (4.5) had this in September, at which I was present. He didn't "perform" well at this, and did exhibit several typical ASD behaviours (turning head away and refusing to play with puzzles he didn't like, and getting upset when given dolls and furniture to play with etc)

Afterwards, I asked the Dev Paed and SALT who were both present what they think of ABA therapy. Paed shook her head, hasn't heard of it however SALT said that she knows nothing about it, but I should not do ABA as "it will stop working if you stop doing it" .

I have received a letter with an appointment in a couple of weeks at which 8 professionals will be present: Paed, 2 x SALTs, head teacher, class teacher, TA, Preschool Home Visitor (well qualified, ex teacher with MSc in Special Needs and Early Years) and Parent Support person.

Not one of these people has particularly heard of, or experienced ABA.

Several of them have told me to avoid silly and expensive miracle cures like Son Rise etc, offered to desperate parents on the internet. Apparently ABA is one of these...

I find this really quite insulting TBH. As far as I can see, ABA stands up well to research etc, and it does not purport to be a cure, simply a strategy for behavioural modification.

Ideally I would like to quote research papers on the efficacy of ABA - but am not sure where to get these (have tried Lancet and PubMed with limited success)

As all these people will have a bearing on DS's education in differing ways, I would like to use this meeting as a springboard to getting him ABA paid for by the LEA (in Scotland here, where there are no ABA schools )

DS is a friendly, affectionate little boy, who would respond very well, very quickly, to even a small amount of ABA, or ABA for a short time.

Can anyone offer advice on what to say at this meeting?

Keep your friends close and your enemies close.
Who said that? de Sade?
It is a piece of advice I am mindful of every single day.
You need the 'baddies' to be doing what you want them to do to make your life easier. You need to think about schedules of reinforcement foir them as much as (if not more so) you dofor your kid.

closer

(Why is my typing so dreadful these days i wonder?)

Bit hard to keep them close when they are running away from your big cuddle hurling things at you.........

Sorry to take over your thread PF I need to hide out on here - I may have to name change soon I fear

They aren't nice to me either. [hsad]
They tell people I am a bully, a liar, obstructive, difficult, harming my child due to intensive therapy and rude - so whenever I meet a new professional there is no chance of me actually persuading them over to my point of view because they have already decided I am a bad person who only won my tribunal due to some weird witchcraft rather than merit.

I do have hope though. The best thing about last year was I felt so optimistic about DS future. Now its being snatched away. We are frantically videoing him in case his funding gets pulled overnight.

Today I received a letter from the Council - I have apparently been referred to an education social worker as I intend to home educate my child. Which was certainly news to me he only went to school on Friday. This is the kind of shit I mean. Obviously someone made an error to contact me so soon but clearly there are some dodgy tactics being planned behind closed doors.

PF I should have said also there is some recent research on Autism Partnership USA website which is actually very honest about what its like to do ABA in the community with insufficient hours, funding issues etc etc and despite all the problems they still achieved 70% of children reaching the same level of their peers. So you should def pursue ABA but expect it to be the battle of your life.

I know I think I need a total f**kers smiley or the mug one always looks like cannabis tea so maybe thats what I need.

Oh shit Agnes. That sounds like extreme bullying tactics.

Wtf is an education social worker anyway?

Poopy, Agnes has to put this on your these as starting her own with this is more traceable iyswim.

Agree with moondog about keeping your enemies closer. I was always utterly charming, and rather sweet and unassertive with the experts I met. Even when I was basically saying "fuck you", I would phrase it like "I don't in any way want to denigrate a system which clearly works wonders for so many other autistic children, but it's just that for my boy ABA really seems to have got through. I'm so sorry to be troublesome, but do you understand I'm just being a mum trying to get the best for her particular boy". It is very hard for them to bully you, when you are being self-effacing like this, as they end up looking like the villain if they are bullying Bambi. So what I said was very strong, but how I said it was very sweet. This comes from years in the machiavellian world of PR.

Am wondering about this education social worker. Off to otbt

Wot's OTBT?

Agnes - feel free to take over, I am listening (despite numerous distractions)

Re fighting for ABA, I spent a few years fighting for my life (media job ) and have learned - choose your battles.

I will not win. Little DS1 isn't the worst case ever, and if they award him ABA (which will be a first here in Scotland) they'll have to award it to many others. Therefore I will lose.

As it has been pointed out, it's not about being right (like in media job...). I may well be right, but I am not professional, and I will be fighting on my own.

So, I need to kick off privately, then be self taught and absorb ABA principles into my own life. Scary, as I am just so unable to be sytematic at the moment.

It has taken 17 months (since first paed appointment fobbing off session) to get here. So much for early intervention... . I hope they're not total shite, but I expect very little (instruction for nursery staff to use more visual cues etc). I have always done everything myself, my own health problems (chronic exhaustion for 8 years) have met with nothing, so I know the score by now.

No, it's never about being right, it's about who can fight longest and hardest and keep at it.
You need to weigh up everythnig very carefully.
If a fight leaves you ending up half dead with a tattered family life, it isn't worth it.

I think there are two types of being right.

1. You are right and believe that that will prevail and justice will be done.
2. You are right buy don't have any faith that the system will ever recognise it.

Of the 2, I think the first can do the most damage to your health and your family.

I don't expect to win the war any more, but I do know that picking my battles and battling hard does make a significant difference. Not in line with what ds deserves or even what he is supposedly entitled to, but enough for it to still be worth it, and since I moved from no.1 to no.2, our lives have been much better.

We are the only family to have ABA where we live. It is possible and the increase of ABA schools down south is having an impact moving north in that the arguments that ABA was extreme / flawed have little credibility anymore

I would like to add:

it is possible to win the fight. it is very hard, and what Star says is right to some degree - you cannot fight purely on the belief that what is just and right will prevail.

but you can win.

we did.

twice. and one of those times, we lived 3 miles from the county gold-standard SN school, which many parents take the LA to tribunal to get into - instead we won a place for dd1 at an ABA school 40 miles away.

and dd1 is not the 'most extreme' either. she was no trouble at all when she was in mainstream. she learnt enough of the routines to get by, she was mostly compliant enough when going inside/outside, and she was beginning to interact with her keyworkers.

we were lucky to win, and to an extent played the system (we were able to move areas, more than once - which had a knock on effect on our family obviously). initially, before we moved the first time, we even had a headteacher who was happy to have ABA in school, and to accommodate just about any therapy (RDA, swimming, music, art) that we could demonstrate helped dd1 in any way (sadly, at that point dd1 was not able to be in mainstream for her own mental health, as she was scared of children).

but I know how rare it is to win the fight. it is, however, my belief that the tide is turning - slowly, yes, but it is happening. it also took us over a year of leaving dd1 to fail in a setting where she was learning nothing, and regressing, before we won (which also took its toll on family life - that was an awful, awful year) - and that should never have to happen.

How many ABA schools are there in England?

Should I use the term IBI (Intensive Behavioural Intervention) instead of scary ABA? (just a thought)

I am naturally an argumentative nightmare the type of person who thrives on fighting for their life (I have fought all my life sadly), so I am undaunted and unbowed by lazy arseholes The Knowledge and Wisdom of Professional People Who Know More than Me

trying to find how many ABA schools there are is hard - I have not yet found a central list which includes them all. they are popping up more frequently now.

this list is quite comprehensive for UK and Ireland, but there are still omissions (Snowflake in London and Treetops in Essex, off the top of my head - there are probably more)

One of the hardest things about trying to get dd1's statement initially was finding out which schools were out there - you can't apply to a school if you don't know it exists! - and the list provided from the LA was not at all comprehensive...

Treehouse / Ambitious about autism probably have a list as they are running the ABA competency framework
You can use words like discrete trials.
Our LA pro ABA EP uses words like systematic intensive focussed teaching and Precision teaching (which Moondog on here knows lots about)

Evidence based practice is a good one.
Better still data driven evidence based practice.
(Precision Teaching is a sort of offshoot of ABA which has time as a vital measurement parameter.)

E (Early)IBI also good-that's the branch of ABA that most of you posting on MN are after.what

As long as people are breaking tasks down into component parts, teaching them methodically, keeping data and using reinforcement appropriatey (especially for kids who aren't motivated by social praise), it doesn't matter what it's called.
It's using ABA.

These kids are not going to learn b y accident or incidentally.
Most kids learn in spite of how they are taught, not because of it.
However you kids probably won't so they deperately need a focussed teaching approach.