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?

Had my LA/PCT got off its arse and assessed my son thoroughly and in a timely manner, he would have been dx'd with autism much earlier than he was and I probably would have been chasing ABA. As it was, he was dx'd with ADHD first and then autism once at school and I was too busy keeping him from permanent exclusion to even research what ABA was. In my LA, there are a couple of parents who have won ABA through Tribunals; a friend of mine was one of them and I got to know a lot about ABA that way. I can see why you want it.

But...I believe in straight-talking and in giving up fights that you're not going to win (unless they won't take a toll on you too much) - my advice is not to even start putting yourself through this. I can't see any LA or Tribunal agreeing to fund ABA for a child such as you describe. The only people who I've known win have either had a more severe child or a child who was very violent/ challenging in terms of behaviour. Your child may well benefit from ABA; most would, but you will not win it from public funds and you may well bankrupt yourself trying to do so.

I'm not saying ABA is pointless - it isn't. I'm not saying don't try and incorporate ABA principles into home/ school/ intervention approaches - you should. BUT I know the toll that challenging the LA even on very winnable cases takes and I don't want you to go through that for what (IMO) is a very unlikely case for success.

Yes, that too.

Shitty system that means that parental money speaks too loudly, but it's true (except in one case - but that child was very very extreme behaviourally and I think it was residential (at age 5 ) or ABA.

LGO. I have no choice.

Why?

Well because I have already been 'labelled' as an ABA parent and held up as an example of poor deluded, even barbaric parenting.

That means that schools (And I'm on my 3rd now) are prepped to refuse to work with us. They are prepped to be secretive and to hide what they are doing less I challenge it. They are told not to take on any of my suggestions just in case it might be ABA by the back door, and above all they are to never EVER report to me the progress on my child in case I disagree with them on his capabilities and perhaps 'punishy-hot-house' him at home. This is all sold to them to be in his best interests.

I don't particularly care whether they call it ABA or what. My ds is past the DDT stuff (largely, - it always comes in useful now and then). What he needs is educational 1:1, not supervisory with lessons linked to his motivation and information collected on his demonstration of his learning (rather than assumptions of what he has learned based on what has been taught) and then regular practice of the things he is struggling with.

But I have to call it ABA because to win it at tribunal, you can't say you are asking simply for an eclectic approach that is much higher quality that what the LA offer. By denying ABA you are undermining your argument, and the years of research.

And what do I want ABA for? Well because my ds IS HF and capable to learn from a mainstream environment. But learning from a mainstream evironment needs to be taught to him. He's not going to learn anything except physical imitation of the other childre incidently (and he can only do incidental physical imitation because we worked so hard using ABA methodology to teach him). He is now, sadly in a position where he will sit, line up and BE in all the right places at the right times which 'looks' like integration but isn't.

For example, his teacher used to think he had a problem with memory. She reported that he sat on the carpet beautifully with all the other children and listened carefully to the instructions, but by the time they had all got up he had 'forgotten' what she had asked them to do. It never once crossed her mind that he hadn't yet grasped that when he was sat on the carpet he was supposed to listen and act on what she had to say. He could copy the sitting quietly and the looking at her act, but that was as far as he had got.

And the Autism Advisory Teacher wrote a report saying that he followed instructions that were given to the group but required individual prompting.

eh?

Doesn't that mean he didn't follow instructions that were given to the group?

You've had some really good advice, op. We 're going through tribunal for ds2 atm ( not for aba).
I just wanted to pick up on your mentioning son-rise in your op. We had amazing results with it, and I'm so so grateful that that's the way we went, because for us and ds it was exactly right. But our children and our families are all different, and in the same way as 'one-size-fits-all' doesn't work in 'regular' education, i don't think it works for our kids either. But it's so not a silly option.
Good luck to you.

Are you going to tribunal for son-rise post?

"The only people who I've known win have either had a more severe child or a child who was very violent/ challenging in terms of behaviour"

Well we won when DS was 3:11. He is very passive in a nursery situation. Only challenging when demands are put on him, which never were except by ABA staff. So he would happily sit in a corner and be no trouble to anyone.

He scores as moderate autism, some speech and normal IQ. He was certainly less severe than many children in mainstream and less severe than the majority of children in MLD school

The difficulty we had was that it took so long to get tribunal. If we could have got to tribunal after just 3 months of ABA we would already have had enough evidence as his gains in the first weeks were the fastest. Unfortunately we started ABA and it was another 13 months to get to tribunal and that was the bit that financially screwed us.

If you really want ABA and have limited funds you could almost wait until 6 months before tribunal and then start and get reports after 3 months in time for tribunal

I think alot also depends on what the local offer is. We are sort of lucky that there are no ASD schools or units only LD schools which they will not let children like mine into, so if a ASD (no LD) child does not learn in mainstream the only alternative is out of area or ABA.

No, not for son-r ise. Ds is doing really well and is now too hf for his previous school :) , but we want a particular grant maintained school for him that has fantastic pastoral support, and as he really didn't do well in school before, we're hopeful. He's nearly 13, and though son-rise has been honestly the most fantastic and rewarding experience, and the 'approach' will always be part of our lives, I and he are ready to move on now. I do know of parents who've got son-rise funding through tribunal, though.

I'm really happy to talk about it, justa. I know it some people feel strongly about it, and I've never really felt like justifying it, though, too much else to do! So I've not tended to share much beyond the odd post on here.

We were never encouraged to expect much from ds, that he'd really talk much, or understand who we were etc, he was pretty autistic, and he has gone so, so beyond what anyone expected, he talks ALL the bloody time, he's fascinated with what makes people tick, what's cool, how do people feel when he does stuff, he's def hf, might even get an aspie dx now. He's had some pretty challenging behaviour in the past, but that was really all around being in school. We did s-r when he was 4-5, then he was p-t in school until a couple of years ago, when we took him out ( he said, mummy, school is hurtful for my heart) again.
We LIKED the thing that some people hate about s-r, which is limitless hope, right up to the possibility of a 'cure'. We never saw that as unrealistic, or that we'd feel like shit if thats not what happened (it wasn't!), or as 'false hope'. Hope is just hope, as far as I'm concerned. No one ever talks about false pessimism, which is what we mostly encountered, and which I think is so damaging for everyone. I don't think ds would be where he is now if I'd put any cap on my expectations for him. And I'm not disappointed or anything like that, he's perfect, always was, would be if he hadn't moved on at all.
The emphasis is on social connection, not behaviour, the idea being that behavioural changes come from the child being motivated to join us in our world rather than by rewards.
And it's so massively supportive of parents. It was such a joy to be able to join in with his stuff, really play with him on his terms and not feel like it was a waste of time, because with s-r that's how you build the connection.
There's a lot of material on their website, including lots of videos with ideas for games etc, and the developmental model that they use. And I'm so happy to give you any other info.

And...I have utmost respect for people who use aba, or anything else that works for them. We're all just doing our best.

Yy, and all the times I had a lovely time with him felt like ' money in the bank' for either asking him to do stuff we wanted him to do and also for times that were really challenging for me. Prioritising real social connection was key for us, and really paid off.

Sorry for the hijack, poopy!

That's a really heartening story post. I have a question was son rise only helpful when your son was more autistic? You say it's part of your thinking now, but do you feel it would make a difference to a borderline child?

My ds is very VERY verbal, but a lot of repetition. The (our) aba approach is to acknowledge /respond to original stuff but not to give a response to phrases we've heard lots before. The thinking being that in the real world peers will switch off from someonewho repeats themselves, but if we engage with the repetetive stuff he thinks he's doing really well at this social interaction lark. We try to start a new conversation topic. (Easy when there's aother adult around, but a bit of a grind on my own sometimes)
Would son rise say that we should engage with the repetition?

I just don't see a friendly, affectionate, well-behaved child, who engages well with people, with slight language delay (but within normal range) and maybe a lack of imaginative play, whose autistic traits were not even particularly noticeable (or having big impact on his life) before the surprise dx, winning ABA from public funds.

As I said, the only children that I have ever know win it are very different to that type of profile. I could be wrong. I'd love to be. Searching the (limited) SENDIST archive shows that Tribunal wins of ABA have largely been the profile that I described above, but there are always exceptions.

Of course, any child with autism would benefit from something like ABA. But, living in real world of budget-protection and LA arse-covering, I can't see how the OP is likely to win it. She can't afford to provide a full programme herself and so I'm afraid I think it is a bit mean to pretend that success in winning it is likely. It isn't.

Star, I totally get why you are going for it. But it has cost you a lot in all sorts of ways and your ds's autism (from what you and OP have said) has had a greater and more obvious impact on his life, meaning there was more reason for LA to fund ABA. Plus you had good evidence that your son was making massive improvements, and you still lost your Tribunal - which you shouldn't have.

It's like when I'm at parent groups and I see a parent whose child has something relatively mild e.g. a moderate spelling difficulty, but no issues with reading or any other SEN and everyone automatically says "get him a Statement; it's the only way". That parent feels like they have to go for it to get their child the 'best' help possible, but the child doesn't actually need it and the parent has a 0.1% chance of getting a Statement for that child.

So the parent spends months fighting for something that they were never going to get and that their child would clearly benefit from but doesn't need.

I don't think that we support each other best by encouraging each other to be unrealistic in our aspirations for support for our children. I'm not trying to say anyone should give up and accept crap or limited help. I just think that ABA is such a huge huge ask of a family pursuing it and of the LA's resources that all bets are off as to how stressful it can make your life trying to get it. LAs hate you for trying to get it and will spend almost unlimited money trying to wriggle out of it. If if if you win a Tribunal, they will seek to review and eliminate it ASAP, as poor Agnes is finding. Unless you have an amazing case, I don't know if the time fighting would be better spent getting good SALT, autism outreach, schooling, TAs etc.

Only my opinion, but, as someone who's spent a number of years fighting much less expensive and probably more winnable battles to get my child a basic standard of education and safety within school, I know what it takes out of you and wouldn't want anyone with minimal chance of success heading down the road I've been on.

Oodles, that's where ds is these days, he's got topics that he's super interested in, and tbh i found it took me a while to 'catch up' and really get that it was an 'ism/ stim' rather than just conversation. And he also dips in and out of being ism-y even within a conversation, so one minute we'll be properly chatting then I'll realise he's just going through his stuff again.

Yes, son-rise puts a lot of store in 'joining' the ism, so when they're being exclusive you join in with why they're doing, unles it's something like spitting or hitting, but you keep really alert all the time and the second you get a flash of real connection you're in with a tiny little push, or expansion, so when ds is doing his list of bands he likes, i do join in, BUT I look out for 'that moment' of real open eye contact, you know when it shifts, and that's the point where I ask him, eg, a question that's maybe still on-topic, but outside his 'set' conversation, so, 'oh yes , I LOVE that band, who's the singer, again?', or something. And I Make myself more entertaining and enthusiastic at THAT point. Ha, im not sure I'm explaining it very well in writing! There's a lot of free material on the web etc though.

The idea being that he's doing what he does, whether when he was four, endlessly pouring sand from one cup to another, or what he does now, talking about music, he's doing for a good reason, to take care of himself in some way; it makes him feel better. I don't want to stop him from taking care of himself, but I'm going to tale every opportunity, and give him every opportunity, to find other ways, in a non- threatening, non-judgemental way. I'm not telling him what he does is wrong; it works for him. I'm showing him that I respect him, it's up to him, but it's really fun and rewarding to be like 'us' too. And as with aba, I suppose, it's the continual practice, the hours you put in that reinforce it.
I've actually got a a s-r child play facilitator coming over for a day in a couple of weeks to firm up exactly this stuff with me in a couple of weeks, oodles, so I might have a better answer then! Because I know what you mean, it's tricky when the ism is 'conversation', isn't it? But you're right, son-rise doesn't do ignoring as such, though we do do a much 'bigger' response for real social connection.

Had visit from Preschool Home Visitor, who went to DS1's nursery to observe. Staff there have been telling me that he is well able to follow instructions and join in etc.

PSHV says, no he does everything on his own terms, plays alone (sandpit), and when other children come to play alongside him, he actively moves away from them .

He isn't particularly able to do group activities in gym time without the teacher / keyworker whoever coming to intervene. Am a bit pissed off I've been misled, but it wasn't intentional, they just haven't a clue.

PSHV said they were saying to her "but other kids do this (i.e. play alone etc). She has had to point out to them that it is totally irrelevant what other kids do, and DS1's issues are all part of a bigger picture.

I find it hard to accept. I am aware that I am blind to a lot of stuff partly cos I'm not there to see it, and partly cos he is my first child, and I have little to compare to (I compare him retrospectively to DS2, who is 2.7) as I've never really had any contact with children before I had one of my own.

ADOS Tuesday. Pretty sure he'll get a diagnosis there. Am resigned to that one.

DS is a bit older (5 next month) and he has started to be able to do these things - play alongside, tolerate other children etc etc but only through the fab ABA intervention he has had. Your DS can learn these skills but as you point out the m/s staff are probably not the ones to teach them. DS teacher was the same at AR we'd all be pointing out areas of huge deficit and she'd be saying but you know other children need help with social skills - and I'm thinking yes but 2 seconds ago you were saying you had never seen him speak or make eye contact with another child! it is frustrating that schools so often think its about hiding things to soften the blow, or to make them look good. I want to go up to the teacher on Monday and say next time leave your ego at the door this is not about you, its about DS, and you are not helping him by pretending things are different than they are.

Forgot to say good luck on Tuesday

Agnes - Preschool Visitor did actually say that all the school people (HT, Teacher and TA/Keyworkers are all invited, not sure which one(s) will attend) will just say lovely encouraging things.

Nice, but really not helping.

Poopy, insist the dx is ASD rather than HFA. And deny to the death any suggestion that 'the positives' are that he has good visual skills. In fact, deny as many positives as you can, but this one in particular. They'll be desperate to 'end' on positives so think of one or two you can give them to help your cause, like he learns quickly when highly motivated and appropriately supported.

Because it is used to shoehorn children into the TEACHH lite approach, which will happen regardless, but you don't want them using 'medical evidence' to fight against the potential fight for ABA. It doesn't matter if the child DOES have good visual skills. Everyone will assume it anyway.