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?

Interesting what you say about visual skills Indigo Bell. I'm not convinced that asd automatically equals a very visual learner in every case though that is the standard doctrine.

As a family we are very visual(lots of art school graduates on the family tree inc me) and have a tendency towards dyslexia. I would expect any nt kids I had to be "visual" too iykwim.

For my DS TEACH lite is a godsend but I suspect he is the exception, not the rule in how useful he finds it ; ) For us the standard state offering suits him, sadly I suspect many are not so lucky, but will never be offered any alternatives to the ubiquitous laminate.

Thanks for the reply post. Yes we too have to remember to be mega enthusiastic about any original content, no matter how obscure. I'm afraid we do quite often tell him: say something different/say something new/tell me what you can see/what's your sister doing etc. One of his isms has become eg 'I'm tiddler, I'm tiddler (x10) - I'm saying the same thing over and over again!'
It sounds like your son is ready to read some Nick Hornby?

PF sorry for continued hi-jack and good luck for Tuesday. Hope your son gets the right dx.

Oodles - I am thoroughly enjoying the hijack!!! Like a good conversation, it goes off at numerous tangents

Bochead DP is an artist, I am ex-art school - a lot of DS1's perceived odd behaviour seems quite normal to me, saying funny tangential things, being observant, a liking for architectural decorations etc.

Perhaps if he was the spawn of 2 merchant bankers then it really would be odd for him to behave in this way. I see it as normal and fun

ADOS results - as expected, DS1 has Autism. It isn't defined in the score sheet as high or low functioning (I think this is a Scottish thing - there is no Aspergers in Scotland, nor PDA)

None of the school invitees turned up, but perhaps that was a good thing.

Now I have to get an EP - this will be done via the PSHV, who has to be canny about this apparently

And that's that folks... No 1:1, no TA, nothing. We delayed moving house due to the assessments, and I wanted to be consistent, but now? Why did we bother... Oh well.

SALT was very worried about ABA, "it's got no scientific basis" but recommended Hannen - "it's got no scientific basis but everyone who's done it says it's good" She is worried that ABA will give skills which aren't transferable to social situations. So, why doesn't that apply to home delivered Hannen?

I have bought a can of Guinness to soothe me. Then I'll bash on.

You have all been wonderful regarding this, advice here, as always, is top notch . Thank you all!

Oh PF enjoy the guiness.
Are you booked on to hanen then? Will they help you make a DLA application? Sorry it's been disappointing.

(ps I know a few kids with aspergers dx in Scotland.)

Poopy, it is very worrying that your salt is saying this because it is not true.
Her opinion is not fact. It should be expressed as opinion.
Hanen is great but not of great use to an autistic child, particulalry one with sever autism (I don't know the nature of your child's ASD obviously.)
Did you email me?
I think you did.
I can give you a long list of all of the evidence for ABA.
It is also endorsed by the Royal College of s/lt.

Bloody hell, what hope have parents got when they can't get facts from peopel paid to deliver them?

Moondog You 'can't' possibly be surprised? Outraged perhaps but not surprised.

You know what though. I wonder, with things so stacked against parents what would be the point of setting up a group to challenge, but then I realised that it was here all along.

We could probably do with being a bit more cohesive, but for those who have used it MN has and is a powerful tool.

Hannen was sold to me as 'like' ABA but better because it addressed social interaction.

The one key thing I noticed when doing the course was that what they were expecting us to do with our 4yr olds, the videos were all of 18 month - 2 yr olds. Where it is 'done' they clearly believe in early intervention.

Sorry to sneak this onto your thread but felt some of you would enjoy a good laugh at this response from our local NHS SALT Manager.

I am a frequent poster but have name changed as this is a direct quote from the response to a SALT complaint we made - am sure you all know who I am but may make me slightly less traceable - the complaint was really about behind doors collusion against ABA by SALT and LA / outreach. We also complained about breach of confidential info as SALT agreed to pass info after every visit to the SEN officer and we said this went well beyond what we had consented to by agreeing to one report for statutory assessment. They have tried to wriggle out of that by saying all the back room meetings were about our concerns and nothing to do with stitching up a case for tribunal. Of course no-one took any minutes so we can't prove what was said.

Their views about ABA certainly show that either the SALT manger has recently arrived from Mars or she has not picked up a research journal in the past 20 years.But to see their views about ABA in writing has certainly been illuminating!!

Read it and weep....

"Different philosophies of working
ABA is not an SLT approach and was not designed as such. lt is a behaviourist approach.
ABA teaches language by focusing purely on linguistics, where SLT focuses on communication where linguistics may not be an essential element. i.e. linguistics is verbal structure and communication is whole context of the interaction, including eye contact, facial expression, body language etc.
SLT is child led, not adult led
SLT capitalises and picks up on all child spontaneous initiations e.g. at SLT
observed ABA session on ... 2010, X was observed to ask for his
Father, but this wasn't responded to as there was an expectation that X would complete his activity [too right he is notorious at using this way of getting out of any work! But I hate this they try and make out we refuse our son interaction and fail to say 30 seconds later he got to go and have a big cuddle with Dad. And I thought the refrigerator parent theory had been debunked some time ago].
SLT keep language simple and short to ensure comprehension at all times. ABA is opposed to this as they try to teach children a variety of responses. [yes because my son is capable of more than robotic 1 word responses]
SLT keeps adult linguistic involvement to a minimum to allow child initiation. [our child never initiated]

Parents feel that a window of opportunity in x's language development has been lost due to a lack of SLT input. There is a developmental window, (Gerhardt and Shore 2001, 'critical window of opportunity for growing the social part of the brain') that as SLTs we are concerned through the use of an approach as structured and rigid as ABA, risks being missed [so its our fault not yours he lost a year, nice touch]. Below 3 years is the critical time for growing the social part of the brain. The main social partner should always be the principle carer [it was]. The challenge with ABA is that a very large proportion of interaction will not take place with the principle carer, but with ABA tutors [at this point we had done 6 months of very PT ABA ourselves with no tutors and had recently employed one for 5 hours a week].Children with autistic spectrum conditions already have impoverished social communication, interaction and social imagination, so reduced time with the principle carer and the rigidity of the 'programme' further handicaps the development of the 'locus of control' [our fault again!]. The 'locus of control' means the child realising that by doing something they can influence another person's behaviour, e.g. child points to a train, Mother picks up the train and says 'train' [err my child could not point and never played with any toy], or child looks at Mother [err child also never looked at Mother] and Mother smiles. With ABA the locus of control is externalised with the tutor. This is a right sided brain function and carries two thirds of all social meaning for communication. This normally develops through natural interaction where a child, through play and having fun, supports their own development of this internal locus of control. lt is dependent on the growth of synchronicity, which is the non verbal participation of activity. Communication development is achieved through trial, feedback and fun, not about learning linguistics but on intuitive interaction. This underpins the development of a normal communication system [hmm but he does not have a normal communication system, he has severe autism and disordered development].There is a hierarchy of development of communication. This starts with attention and listening [pre ABA he did not attend or listen], moves through play [did not play] and interaction [did not interact] on to understanding, which then underpins expressive language and eventually speech. lf any of the underlying stages are missed there is no platform to develop the later stages of expression and speech [except he has gained speech despite never learning to play and before gaining understanding - which is pretty typical for autism right]. ABA focuses on the later stages. As it can be seen therefore this can be especially difficult with such a young child like X, who was only 2 years old when initially seen. At age 2 years, attention and listening at the level ABA require can be a challenge for any child, even
without autism. When the ABA session was observed in January 2010, X was aged 3 years 2 months and was engaged in ABA activities for 5-6 hours a day [sadly we only managed 2-3]

They then go on to say ABA does not work on joint attention or social skills and to point to the progress in joint attention and social skills as resulting from their intervention even though they actually never had any programmes for these, conveniently ignoring ABA did have programmes in these areas and the progress materialised immediately after ABA started working on them.

Arrghh! Total crock of shit.
The sad thing is they have spent literally hundred of hours doing what they regard as a really thorough response to our complaint - and the outcome - they are blameless and have had massive success - we have abused our child and deprived him of love, attention and social interaction and harmed his development .

All I can say is I now understand why there are so many completely non verbal children out there...

Unbelievable.
Some extremely worrying and inaccurate information there.
Half baked opinion sold as fact.

I'm sorry but I cannot find anything to laugh at in that.

I have tears in my eyes actually.

When will these people open their minds and stop being so defensive?

I've already filled in the DLA forms as per Cerebra guide. I was waiting until an actual diagnosis had been given as I know DLA are arseholes difficult and tight fisted, so thought I'd avoid battles by just sitting it out for a wee bit.

That was it really. After the ADOS feedback DLA got mentioned, I was told I can apply for benefits to help us out.

Our life is utter hell at the moment. To be honest I could cope with the ASD, I could deliver ABA at home with the assistance of a tutor, but I am just so overwhelmed by everything else, and have been for years and years now.

DP is away 14 hours a day, and is actually starting to look like he is having a severe breakdown (and trying to hide it, which is even more worrying )

Fuck I hate all this. DP and I have zero support from family / friends, and we just can't cope with all this. We live in a town where neither of us now work (he commutes) and we have no family, no anchor to keep us here. It is very very isolating.

Life was hell for me well before all this. Fuck fuck fuck

My darling girl.
It would be useful to see your GP or HV to ask for some immediate initial support.
A Home Start volunteer perhaps.

You can self-refer to homestart. Most people don't know this but you can. It helps if you have hv/GP backing but don't feel you have to go begging for their approval. HS are very well qualified to assess your need themselves.

PF I am so sorry
All I can say is that DH and I live on a third of what we used to and we manage ok. Actually the stress that working brought on top of everything else was not worth it. Tax credits (until Cameron chops them) are actually pretty generous if you manage to do even if a little bit of work + DLA + carers etc
We do get by.
I know giving up the 14 hour day salary seems like a big deal but actually we have found it has made life easier - we share the caring and both work part-time. Financially its not a sensible decision but in sanity terms it works well.
I thought we could never live on what we do now, but actually we do ok
It can't last forever eventually we will have to put some money away for uni fees and pensions, but right now not working / earning is fine

Just to add a few recent research papers which may provide some insight.

Randomized, Controlled Trial of an Intervention for Toddlers With Autism: The Early Start Denver Model
Introduction to Special Section on Evidence-Based Practices for Persons With Intellectual and Developmental Disabilities
Using Participant Data to Extend the Evidence Base for Intensive Behavioral Intervention for Children With Autism - Sigmund Eldevika,, Richard P. Hastingsb, J. Carl Hughesb, Erik Jahrc, Svein Eikesethd, and Scott Crosse 2010

The problem has been that much of the existing research does not meet the current quality requirements such as having a Randomised Control Trial basis, with no control comparison, and follow up assessments. Which would question the validity of the older research programs.
The other issue is that research is now beginning to unravel the potential causes the autistic traits, or behaviors, and identifying the underlying individual disabilities which can combine to cause autism, and the focus is moving to supporting these underlying causes of the behavior issues.

Hi Myspeechtherapistisanalien.
wtf? I haven't seen such a load of psudoscientific baloney in a long, long time.

'A critical time for growing the social part of the brain?'
'This is a right sided brain function and carries 2/3 of all social meaning'

I really do hope her understanding of general SLT is better than her knowledge of neurology, ASD or behavioural psychology. I am genuinely concerned that she is willing to freely comment on areas that would be expected to fall outside a SLT manager's training and experience. It's rather brave to display such ignorance, in writing, in response to a complaint.

poopy, the diagnosis shock is still a huge blow, no matter how much you expected it or fought for it. The other posters have good advice for the overall misery, but as for coping this week, maybe just write it off and focus on surviving till next week when a bit of your strength should be back.