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?

Agnes, I'm sorry if you misunderstood me.

I have never done even one hour of tutoring ds1. Even the thought horrifies me. He sounds very much like your son (exactly same age too) and is exceedingly passive and hard to motivate. No way do I have the patience to sit with him and try and get him to work (or even work on play) as the tutors do. I find it hard enough to give my nt kids my undivided attention.

And although ds1 has been very quick to learn, he is now at an aba school, as he still needs intensive aba without distractions. So yes, if we could have got him 40 hours a week (which sadly we couldn't) we would have taken it like a shot. He would have come on so much more by now, without a shadow of a doubt.

What I was saying is that parents need to be versed re the programme targets, reinforcers, etc so that they can (informally) back up the aba outside of therapy hours. Our consultant told us of a study which showed that if children are aba'd when the parents haven't themselves chosen/ fought for that provision, then outcomes for the child can be considerably worse as some parents leave it all to the setting and fail to carry on the principles at home in the same way as parents who have researched it to death, decided it's the very best provision for their child and gone through hell and high water to secure it.

I'm just not sure from what she said that aba can be compartmentalised in that way and taught in isolation.

By god these reports are depressing though. You try so hard to be optimistic and you try and remember how far you have come, but then you see the path ahead, with so many challenges for your child internally and then the external challenges that are going to be thrown at you both

maryellen - I have done fuck all ABA with DS1, it's just too demanding for me. I need extra help and funding with this.

Starlight - good luck with the tribunal

Hi PoopyFingers,

where are you in Scotland ? I am running a small ABA program

I think the research Agnes points to shows that ABA is at its best when there is parental involvement - not necessarily parents doing any tutoring hours, but parents being on board with ABA and continuing to be consistent at home. Where parents just leave it to the ABA team, and don't take an interest, outcomes are far less robust.

To me , that's true of all parenting and education. Any child does better if they have involved parents, who are backing up lessons learned at school and encouraging the kid to do homework, learn new words etc. In fact there are studies suggesting that involved, committed parents have more of a bearing on a child's educational learning than even the choice of school.

Sickofsocalledexperts - That's what worries me, I have really been drowning for years, and I can't keep on top of anything so how can I do ABA at home?

Our house is filthy, it's a total bombsite, and the fact that I'd have to organise ABA is just impossible.

Sadly I can't even find space / time to read or play with my kids any more, how shit is that?

I have no support from relatives, and have just had one to many "frenemy" come to my house to tell me what a shit parent I am because I am allegedly so disorganised.

The thing that annoys me is that I am far from disorganised, I just have had sooooooooooooo much to do over the past few years (single handedly have refurbished 1 flat and 2 houses, whilst having new baby / moving to new town / exhausting pregnancy with DS2 / studying OU).

But my house is a bombsite, and it's amazing how many Stepford Wives people can't tell the difference between a clean house and a good parent. Fucking exasperating.

...and I don't use hair straighteners, so am obviously inept as a person

Poopy, I've been where you are. I promise you. It's tough. Especially as you say goodbye to you OU course, goodbye to your investments in favour of time and money NOW. Goodbye to your plans. Maybe even goodbye to your home.

You don't want to. Wtf should you? But you know what? No-one gives a fuck.

Sorry to be so blunt here but you'll find your own path through this and you'll do the best you can.

Starlight Yes, you are right. This is so frustrating isn't it?

What have you found to be the "before and after" result (if there is such a thing) of ABAing your child?

There is NOTHING on earth that can beat the feeling when your child exceeds all expectations of the LA.

It doesn't mean they'll be alright, heck, in some cases becoming more aware and capable can be worse for them. But just proving that those doom and gloom prognosies are bollix cannot be beaten.

Poopy, I didn't mean to be all doom and gloom about things but I see myself in you in some ways.

I came on here with one niggle after another and whinging about the unfairness of it. I was right. It WAS unfair. Things WERE stacked against me. But at the time I believed in these organisations and systems. I believed that disabled children got support. I believed that struggling families got help.

As I started to realise this wasn't true I got bitter and miserable. I was offered no intervention at all except for a 'support group' run by the LA that I was invited to only after I kicked up an enormous fuss. But it was halfway across the county. I couldn't drive so it would have meant 4 buses, 2.5 hours to get there with a double buggy (which in our county all have to be folded). When I pointed this out no-one would help. It was tough luck. Transport wasn't their remit, or so they told me. Neither was it social services, nor anyones. I couldn't afford the £90 each way taxi. Taxi firms were unhelpful. When I explained what it was for they insisted that I MUST be able to get it paid for by the LA. They believed too!

In all subsequent meetings the LA went to great pains to ensure everyone always knew that I was invited to a support group but didn't ever take up the offer.

I whinged on here. Boy did I whinge.

Until it was pointed out that actually, the very last thing I or ds needed was to attend an LA run support group and actually my battles were far better placed elsewhere. Find out what they offer at the support group and evaluate it. Figure out whether it would have been any use and if so, source the information/support elsewhere.

I was told to stop being a bloody victim and take control of my life. Not because that is the fair way, but because it is the only way.

I cannot thank MN enough for the rough handling I had in the early days.

Starlight - Yes, I see your point. I now of the mind that I am not really going to worry or get bitter about the lack of stuff from NHS or LEA, I have gone through life on my own with precious little support from anyone really, so expect little (and am sometimes pleasantly surprised!)

I will state my case, then move on. I need not to allow myself to be scathed by this, it's not constructive really is it? They'll do fuck all. I can accept that, accept that it's wrong, but accept it and move elsewhere.

DS1 is very manageable, so frankly 2 seconds of ABA will probably sort out his stuff. I just need to get an initial tutor to sort out my arse and set me off so to speak (have been PMing via SN!)

What support would you have got from a LA group anyway? It would have been a pyrrhic victory, but without the victory, as I see it.

MN is great. As is my soft little DS

That ok I know I am being oversensitive at the moment. The thought of a third tribunal and my child is only 4. God I could have a dozen of these under my belt by the time he's 18

I do think many parents can do enough ABA in the early stages to prove it will work and is better than LA provision and get as far as Tribunal, but sometimes I think people on here give the impression its easier than it is, and it is so dependent on the child. Some do need the Lovaas / DTT 35-40 hours. I just don't want people to feel crap if they can't do it. There is enough blaming parents as it is.

Sometimes there are discussions about Headsprout etc etc and I just feel that DS is a mile away from being able to sit down and do something like that. And it hits me that he is at the severe end even though I think he is doing really well

I know research which shows the kids who did the best with ABA had the fewest hours - because they needed the fewest as they were the fastest learners / more mildly affected. I just wanted to make the point that sometimes children can do well on part-time programmes, but some children will only do well on the fulltime ones.

The ideal is to put in 40 hours and then take hours away until you reach the point where progress slows and then you have found your perfect level.

DS could do 70 hours and learn twice as much. The main restriction on him right now is that 35 hours is not enough to do everything we want and which he is capable of learning right now, so even with 35 hours we are having to put loads on the back burner.

I'll wind my neck in now.

Good luck Star.

Yes I know Agnes and everything you say is true. But there has to be hope. Hope is what drives me. Hope is surely what drives you? And not fruitless hope either, - evidence-based hope [hgrin]

I'm in a totally different situation from your right now. I lost my case. I've had a rest and I'm fresh for the fight. You won yours and have spent a year looking over your shoulder. You've had no rest and you have been presented with a further mountain that really needn't have been put there.

Our children's needs are different. I'm not aiming for a higher functioning child. I 'probably' have that now (was dx moderate-severe which is where I believe he would have stayed and 'could' return to without sufficient support now). I am aiming for a young man that hasn't attempted suicide before his 25th birthday, as 15% of men with HFA have. The fear of this drives me too.

But you're absolutely right in that parents must not blame themselves for not being able to do all the work with their children themselves. It is hard not to though. I find it hard knowing that I could do more (especially as I know exactly WHAT more could be done and that it would work) but also being unable to do due to time/resources/other children etc. I think all parents feel this regardless tbh and reconciling that to be 'okay' is really really hard.

I think those of you with whom I 'engage' (how about that for an on trend word?) regularly, know that I have little faith or beleif in the current status quo and that I have experienced a lot of what you have as a parent.

I must take exception to this Star however

'Instead, they get to swan in and out of desperate parent's homes, give them a couple of pieces of laminate, talk to them like they are five and tell them that they are lucky to be living in such a great and forward thinking LA, to which most poor parents are just so bloody grateful for given that they have by then been prepped to have such low expectations.

They get to travel from home to home listening to the radio, drinking takeaway cappucinos with no timesheets to fill in to account for their time, and simply arrive at the child's house with the 'resources' they bring to all children's houses (usually bubbles and laminate), be offered tea, sometimes cake. Go home and have their family and friends tell them how wonderful they are for working with poor little disabled kids.

If a parent dares ask them on what basis they make their recommendations, they get hostile and call in social services for refusing to 'engage' with much needed therapy. They might even write to your GP to suggest you are investigated for a personality disorder.'

Most of the people with whom you will be dealing, work with over a 100 families. That's 100 different kids, their parents, their siblings, their teachers, their LSA, their ed psychs, their OTs, their so on and so forth.

They are driving hours each week, fillingnthier cars with a weeks' worth of notes and materials and are under a lot of pressure and hassle from thier managers. It's not an easy job and most of them would tell you to your face (if they were allowed to) that they don't think your child is getting a fair deal.

Be angry at the system and expect an evidence based service. But please don't assume these people have it easy. Don't make it bitter and personal.

Moondog, seriously, you haven't met our Autism Outreach Nursery Nurse.

I take your point in general. But this particular individual doesn't do anything except self-importance. And our intervention service is so poor that her, is all we every got for 1 hour a week until I stopped it.

I don't believe that any of them think we are getting an unfair deal. I believe that the believe the bollox they are trained to believe in that I am a pushy deluded parent and my child will never amount to anything, and if he will it will be natural maturation.

And her, and her boss and HER boss invited me to a completely unnecessary meeting with the sole purpose of taunting me about our tribunal loss.

These people are not nice.

Many are. Many are doing their best under extreme pressure, but just because you are a professional working with disabled children, doesn't automatically make you a good person.

I find tutoring really hard/impossible.

1. I get upset if DS doesn't want to engage (my biggest problem)
2. no experience
3. no training other than observing the consultant and tutor
4. I can set aside small chunks of time, but to focus on DS for two hours and not get distracted by DD/making next meal/clearing up last meal/hanging out washing etc is fairly impossible.

If I had a lot of back up help with domestic stuff and DD, then it might be more feasible, but I'm just too involved. It's so urgent and important to me that I find it hard to make the activities fun.

Star, you do seem to have had an unbelievable amount of hassle and general shit thrown at you and of course you are free to say whatever you like. This really is the place where people should be able to let rip.

I get very angry on an almost daily basis about a lot of what goes on. I do remind myself constantly however that most people are doing the best they can with what they know.

I don't believe I made very much difference at all to anyone for many years unhtil I began to acquire the knowledge I have now.

I am a completely different person in every single way.

I agree oodles. I've done a 'little' bit with other people's children and I am a better tutor with them. Partly because I cannot shout and have to appear professional.

With ds it become about MY reinforcement probably because of the emotional investment. He isn't doing what I say which isn't rewarding so I get cross and impatient.

Moondog You know what? You might have a point actually. Maybe these people are nice. Maybe they're just not nice to me, and they have good reason I suppose.

I KNOW stuff and I challenge them. Don't expect it makes them comfortable. But honest to God I DO try to do it politely. But there isn't really a nice way of saying 'that's great about ds' progress, but how do you know?', or at least they don't seem to find a nice way of taking it.

People are scared.
It's all a house of cards/Emporer's New Clothes.

If their methods are exposed as being as pointless as so many of us know they are, what are the implications.
They are terrified.

I'm terrified at the thought of the crap I used to come out with. I was drawn into it as much as anyone else. And I'm smart and very well educated. I tohguht I was an indepenendent thinker. I wasn't.

You can't take responsibility for changing the world.
I think you have enough on your plate getting a fair deal for your kids.
Then, when you have done that, if you have the nergy, you can, like Virginia Bovell, turn your attentions to others.

I was reminded again of how the odds are stacked against parents as I had a very hostile and defensive set of people to deal with (in realtion to my own child) recently. They cooled down and were fairly pleasant once they realised I, to coin a phraes, knew my shit, but as I toldf my dh when I got home, if I get treated like this, knowing what I do and having the professional position I have, what hope in hell does any other parent have?.