Advice needed for dissertation on AS and education

[roo66]

Hello everyone
I have a dd aged 6, diagnosed in February this year with Aspergers Syndrome and SPD. I have read the posts and responses on this SN page of Mumsnet ever since, though this is the first time I have posted myself. I am here most nights, and it is your ideas, suggestions and expertise that help pick me up after a difficult day; thank you.
Anyway, I?ve recently been given the opportunity to pick up my studies again after a break of a few years, and I?m hoping to do a dissertation on something to do with AS with a link to education. I know this is a really wide area, though, and so thought I?d ask whether any of you had any suggestions of an issue to focus in on. So far I?ve thought about possibly looking at transitions and school, or playtimes/lunchtimes at school, but am very open to suggestions at this stage.
I hope you don?t mind me asking, and any thoughts would be really appreciated. Thank you.

Well, personally I would look into the cultural differences here and the US.

Why is it for example, that the US INVEST in children with AS as potential brain surgeons and engineers, and start early intervention around 14 months, but here we fob parents off for as long as possible for dx and then the educational provision is largely baby-sitting and 'managing' them.

Also you could look at the difference between 'educational needs' (UK) and 'educational rights' (US)

And perhaps you can look at the different models of funding. In the US, AS is considered a medical condition and subsequently funded by the health service (via insurance), whereas here, the medical establishments dx and then hand you over to education to 'treat'.

Alternatively you could look at the difference in the models for health and education.

For example the health service has to use evidence-based practice, but have no obligation to fund it. So they can tell you what you need but then tell you that they can't afford for you to have it. Whereas education have to fund whatever a child 'needs' therefore they go out of their way to deny the need in the first place.

Hope that has given you some ideas.

Mine was on carers (policies and practice) but I know creatovator on here is doing something silimal, maybe you could finder and ask... I'm sure she will help if she can.

Ha just invented a new word; Silimal!!! I meant Similar

I like the different countries/models idea a lot, though I think more knowledge should be shared within the EU - we don't even have to go across the atlantic.

Ds has a half bro raised in E. Europe and the Uk should be ashamed of the differences.

E Europe - diagnosed at 2, ss till 7 in a kindgarden with teachers so specialist they can understand mri scans after 7 years specialist training. Now on course to be an A* student at GCSE after only 4 years in this country. From 7 has been mainstream all the way. Several countries in E>Europe use a form of aba as standard pedagogy and early intervention not only happens but happens very effectively. Funding has to be effective so is targeted based on outcomes - this is not a rich nation. The intention is that education should end with a self-sufficient adult who needs little/no support

UK - Unless I go private, no diagnosis via nhs expected until 11. Academically a disaster. 1:1 untrained TA and tecahers who get perhaps 30 mins of a pgce course on the condition. Teacch lite is standard pedagogy. Funding is scattered and lots is wastd on review meetings, support workers, mentors, tribunals etc. The intention is that the child can eventually be handed onto adult support services as needed for life.

The sad thing is half-bro was originally FAR further along the asd spectrum BUT unless I win the lottery is on course to have a far better adulthood in terms of career, academics and independence. DS is in danger of costing the state a fortune in lifetime support. Yet the UK is considered more "advanced" socially,(caring) and economically.

That's really interesting Boch

I think that is too why the US fund early intervention. The insurance companies want to pay out the least and recognise that in 15 years time these kids will cost them a bomb if their issues are not addressed effectively whilst developing.

There are lots of US/UK comparisons but I haven't been able to find many published E. Europe /UK comparisons and lets face it - if the E. Europeans could reinvigorate the frankly lazy and complacent sen industry the way they did the construction industry in the 1990's it would be fantastic My only request would be that we looked at countries like hungary and romania as well as the obvious poland.

We keep hearing about budget cuts & lack of resources. My personal view is that we need to look more at those countries who have had historically had to get results on a shoestring to get the best "bang for our taxpayers buck" in the long term. IMHO the UK sen industry is a bit corrupt and dishonest behind it's veneer of "caring".

What's lacking in the UK if you compare it to both the US and the very different E. Europe (totally different social models) is real measurable accountability. The E. European taxpayer and the US insurance company both EXPECT measurable tangibles long term results, my personal belief is that the fractured UK support system does not as yet and that parents are made to feel silly for wanting that.

Not all children with asd do well in the US, as not everyone has good enough medical coverage to qualify for the right help, this is often glossed over. I'm sure the E. European model fails lots of children too (gypsy children & those in care being a obvious example). The UK certainly fails too many children. Any study would have to look at causes for failure within each system too.

It would interesting to see how to standardise long term success. (End the postcode lottery). Success in my view is the number of adults who are able to lead independent lives without lots of additional support, (as we all worry what will happen to our kids when we are gone).

I understand that Norway has made ABA mainstream and the default option. It is too early for the results of researchers but it will come.

The interesting thing about their model, is that it is cheaper than what was before (iirc) and as it is teaching children in a social context and within a school it is actually quite different from the ABA type models we have here where you have to effectively opt out of mainstream state education as there is just no compromise and schools will not tolerate it.

LA's here then go to tribunal to fight against it for not meeting the child's social deficit needs . They often win despite not being able to demonstrate how they themselves can meet this needs insisting that it is purely BEING in a social environment that creates the skills, as if the inability to do this wasn't the very core of the diagnostic criteria.

This will all make very interesting and outrageous history one day.

There is a massive cultural issue in the UK sen industry imo re admitting that:-

a/sometimes the status quo is wrong & new methods may supercede old ones
b/admitting that as an individual professional in a scientific field learning is life long and that noone knows everything.

zzzz - that kind of crap goes unchallenged every day in the Uk cos the very few parents that do are immediately labelled "difficult", and forever described as having ishoos.

Elsewhere in the world, if a professional talked that kind of crap they'd expect to be called out on it, therefore they just don't do it. If they don't know something they refer onto someone who does straight away and then gen up HARD on the missing peace of knowledge so they aren't caught out a second time iykwim.

I agree re the "caring" agenda btw. Other countries don't let the sen industry hide behind this facade and so are making progress. Professionals are expected to update their personal knowledge and use best known practice as a matter of course. A heart surgeon or computer expert who qualified 20 years ago knows his knowledge is out of date & that he's unemployable unless he continuues to stay in touch with new research - why are other "experts" expected to do less?

I'm looking more and more at how things are done elsewhere re asd's, as there is a huge body of low-cost simple ideas that are so effective and yet go ignored in the UK. The issue I have is my lack of linguistic ability to translate stuff. A good example of a rare cross-over of the kind I mean is the teodorescu "write from the start" programme, used as standard in Romania yet only the chosen few will ever be offered this in UK schools. It can be implemented by any class teacher using blackboard and chalk.

And understanding that reward systems need to take account of what the child finds rewarding rather than what the teacher assumes/wants a child to find rewarding is not fecking rocket science.

And when someone kindly points this out the response is 'well children have to be able to learn without being motivated to'.

er yeah, perhaps, when we get anywhere NEAR that being a possibility, although actually I deny that anyone does anything without being motivated. I mean we might hate making dinner but the motivation is to a)be a good parent, b)avoid grotty complaing children, c)attempt to look after the nutritional needs of the people we love and d)our own hunger levels etc.

Wow! Thank you so much for all your ideas. My head is fizzing now. Will work through and let you know how I get on and what I decide to go for.
Agree with imogengladheart, so glad I found this board.

wow this is really interesting. I didn't know about E. Europe.

Perhaps another suggestion is university and AS. Certainly in USA there is increasing number of AS children attending and universities are starting to have to develop programmes eg of social and daily living support and there are even specialist colleges. Would be interesting to know how many children with AS are attending university in UK and whether universities are developing any support programmes etc or planning to as it must be the case that as milder cases get diagnosed more AS young people are being identified within the student population.

roo66 - I think the executive function/working memory issues with AS are often overlooked but explain so much.

Sorry, now this is a complete hi-jack.

zzzz Waves hands madly - over here - I am a professional researcher

However, I am a lawyer so I could not begin to start comparing medical models in any legitimate way. I could, however, compare legal models for intervention for SEN. A straight UK/US comparison would be easier (no language issues, well-established pressure groups on both sides). I am sure we could put together something.

I know we floated the idea of doing something as a group a while back. Did we get any further with that?

I was thinking - in terms of very basic accountability - that we could start with a very small issue like the complete absence of accountability and transparency of SEN Panels as decision-makers. A FOI request circulated to all LEA in precisely the same terms so that we could properly analyse the results. We could then tie in with useful conclusions recommendations and link with some media savvy supporters??

Count me in if you are setting up a group. Also found that there is a goup where you can give your opinion of the nhs and recount your experiences.

The thing that really irritates me is the VAST amount of money spent on parent consultations and groups. The number of support groups that have mushroomed around me is a astonishing. I suppose it is a good thing that parents have somewhere to tot to and talk to each other but I can't help thinking how this money can be used to actually improve the children's education.

Parents consultation group - the amount of money spent on those - travel expenses paid, lunch and refreshments provided, childcare reimbursed, etc. to find out that parents want more SALT, OT etc but after 2 years I don't see any significant increase of provisions but there is a nice report somewhere saying how many parents were there, what they wanted etc. In this day and age, they could have done this over the internet and use the money saved on direct intervention.

Draft it AT and I'll send it to 25 LA's through the 'WhatDoTheyKnow' site.

Happy to help if you'll tolerate my lack of serious academic research expertise & dyslexia.

Thread hijack alert - "caring carrot" is henceforth an official mumsnet sen term as it's just so cool

I love caring carrot too.

It just sums up so perfectly the whole patronising aspect of the SN industry.

I'm really interested in this. I don't know if I could help but would love to be included. I am an accountant by job but have a genetics degree. - its ages since I did any real research.
I'd love to be able to quote comparisons between different countries as when you look at support boards the experiences between countries can be so different.

Interested folks - do you want to PM me?

I think we have two potential issues here:

1. A longer term research project looking at the way different countries support autistic children in education. This would throw up many different issues: resources, experience in the discipline, language difficulties. Comparative studies are notoriously difficult as you are always open to accusations that you are misinterpreting context and comparing like with unlike. However, it need not be a formal, journal publishable type of survey. It could be an informal summary. I think there is an Autism EU organisation which could be a first port of call. Or you could concentrate on US/UK differences in health/education model.

1. A very simple project based on FOI Act requests on a simple but fundamental issue such as the lack of transparency in decision-making (e.g. SEN Panel meetings) or the absence of any criteria for measuring outcomes or the availability of S< in schools or the quality of staff training. This could be done easily (with several people submitting the same request nationwide) and information could be collated and compared in a very straight forward way. This would enable us to look at examples of 'best practice' and highlight poor practices.

Obviously, once we have obtained responses and analysed them, we can think of how best to use the results.

Let me know your thoughts. If you contact me, I'll loop everyone in an email group and coordinate once we have agreed a plan of action.