Here some suggested organisations that offer expert advice on SN.

Live webchat with Professor Richard Hastings, MONDAY MARCH 17, 9pm

(197 Posts)

MNHQ have commented on this thread.

RowanMumsnet (MNHQ) Tue 11-Mar-14 09:50:57

Following on from this thread, we're pleased to announce that Professor Richard Hastings will be joining us for a webchat next Monday evening.

Richard is currently a Professor of Education and Psychology and Cerebra Chair of Family Research in the Centre for Educational Development, Appraisal and Research (CEDAR) at the University of Warwick. He is a researcher with interests in educational interventions, including early intervention, for children with learning disability (LD) or autism; mental health and behaviour problems in children and adolescents with LD/autism; and the experiences of families raising children with LD/autism. Richard is working to make research findings and evidence available to parents, including through his blog.

We hope you'll be able to join us on the night; if you can't make it, do please post up your questions on the thread in advance, as ever.

Thanks
MNHQ

rainbowqueen Tue 11-Mar-14 10:53:52

Hi there,

My husband has AS. My five year old son shares many traits with his father but functions well amongst peers and in school.

To what extent is it worth exploring my son's possible link to AS, without reading too much into character traits that may be ignored if his father didn't have AS?

My motivation for exploring any link would be to try and prevent my son from going through the hardships that my husband has had to deal with throughout his life.

Thank you.

moondog Tue 11-Mar-14 13:12:52

Hooray!!!
Been waiting for this one for AGES.
The Prof is the business! smile

ProfessorRichardHastings Tue 11-Mar-14 14:04:44

Looking forward to the chat. Please do remember that I can't give professional/clinical advice through this medium, but I will certainly do my best to answer the questions you have.

StarlightMcKingsThree Tue 11-Mar-14 19:22:34

Hooray! Fantastic news.

Off to select from my long list of questions grin

Redoubtable Tue 11-Mar-14 22:33:02

Delighted to hear from you and looking forward to the chat.

Working memory in children who are high functioning with regard to learning e.g. children with ASD, DCD.
Can it be improved and what strategies do you recommend?

Thank you. thanks

lougle Tue 11-Mar-14 22:37:04

How kind of you to talk to us all. Hmm...questions...

bialystockandbloom Tue 11-Mar-14 23:17:34

Hurrah, this is brilliant! Thank you for coming to MN.

Have many questions, and as I'm aware we're only supposed to be limited to one, I think my most obvious one is:

Why, in your view, do local authorities/schools and other services provided for children with autism (minimal as they are) seem so opposed to ABA? Is it cost only, or is there an ingrained ignorance and prejudice about it? And if so, what do you think is the best course of action to address this?

ps MNHQ is this going to be linked on the main board as well as the SN section?

homework Wed 12-Mar-14 21:56:42

How can you help a child who is able to work things out in there head , but when comes to actually writing things down on paper , just can't seem to get this same information from there head down onto paper .

AgnesDiPesto Wed 12-Mar-14 21:59:57

Why do you think there is so much resistance to changing service models in UK even when the evidence base is so shaky? I am thinking about early intervention for children with autism being delegated to mainstream nursery carers from age 2 (although that was the last place my 2 year old wanted to be after a massive autistic regression) - what evidence base is there that this is better than home programmes? Soon LAs will have to fund 25 hours of free childcare (intervention) a week, what a waste of money that could be used on home ABA. There's widespread use of diluted TEACCH methods in schools although there is no research base for 'a bit of teacch' and little for the full special school version. And most recently I read about the Justice4LB campaign where again (post Neary and Winterbourne) a young person was taken away from their family for alleged assessment for challenging behaviour / anxiety and died when for the same cost of an assessment unit you could hire your own psychologist and Behaviour team and have them almost move in! Surely it makes more sense to assess and 'treat' someone in their home and community? Can you see a time when we stop trying to fit our young people into the services we have already (schools, nurseries, units, hospitals) and start designing services to fit our young people / that come to them (like ABA does)? I'd like to believe personal budgets or direct payments may provide an answer but sadly most professionals are dismissing those as harmful to service provision / commissioning and making patronising assumptions parents won't know how to pick a quality service. (I am pretty sure LBs mum would have done a better job). I don't really see a lot of common sense in autism / LD provision, let alone research. How we do change this?

inappropriatelyemployed Thu 13-Mar-14 11:51:27

Thank you so much for doing this!

I have a lot of respect for, and interest in, ABA as I see it as a potentially very empowering model for disabled children/young people which has a very clear evidence base.

However, my experience with it to date for a 10/11 year old with Asperger's has been very disappointing.

Those engaged with drawing up programmes were very experienced and trained by leading organisations (or based at Universities). They were not charlatans but both seemed to think the views/interests of a child were insignificant and what mattered was what the adults wanted the child to be/do. One consultant had two very lengthy visits to my son's school but didn't even spend time talking to him about at any point during 6 hours spent in school. I know this because I was there.

Neither consultant seem to have any understanding of the reality of secondary mood disorders for children with AS at this age. In fact, they were very dismissive of terms like 'anxiety' as if this was just the child's excuse for getting their own way. However, although they dismissed the use of terms which I felt hindered their agenda, they were quick to use value laden terms like 'tantrum' to support their own point.

The approach seemed to be very 'normalising' and entirely inconsistent with the ideas set out in law in the Equality Act of making reasonable adjustments.

This was not just what I thought. My son's school, who were very welcoming to the idea of ABA (and had paid themselves for a non-verbal, younger child to have it) were very shocked by the scant regard paid to the 'whole child'. We agreed together that we would not follow what was being suggested.

In a nutshell, I asked for help as I had a disengaged, highly anxious 10 year old Aspie who I felt was in danger of completely dropping out of education. Their only answer was to force him to do as he was told.

I now have an 11 year old who is out of school altogether with a package of tutoring paid for by the LA. His mental health is very good but his psychologist says he has suffered a traumatic response to his school experience over many years which borders on PTSD.

So, isn't there a need to admit that many practitioners simply aren't trained or equipped to offer advice and support to children like my son?

Isn't there also a need to ensure that the agenda is child-focused and not normalising?

StarlightMcKingsThree Thu 13-Mar-14 12:01:04

As a parent, how can you introduce or talk about ABA to professionals without getting the instant cold shoulder and treated as having been brainwashed by unethical cowboys?

I admit I didn't keep adequate data on my attempts, but I can't imagine there are many approaches left I haven't tried, having how been through 3 sets of LA departments and 8 schools.

mymatemax Thu 13-Mar-14 19:22:18

How do you see the new child & families bill, Local offers & EHC plans improving things for children with LD/Autism

If you were involved in establishing a local offer for a Local Authority what would you like to see in there as standard that isn't commonly available now?

What would be top of your wish list?

StarlightMcKingsThree Thu 13-Mar-14 19:23:09

Oooh Good question!

sickofsocalledexperts Thu 13-Mar-14 19:46:22

Why does Prof Hastings think other influential university education establishments eg University of Birmingham and CRAE in the London Institute of Education have set their faces so firmly against ABA? Even the NAS don't seem to like it much. Why are we so different from the US in this respect ?

bochead Fri 14-Mar-14 01:33:15

Why does the UK establishment refuse to address the needs of the child with sensory issues?

I'm only just beginning to realise what a large minority of the overall school population this is, and how poor provision is nationwide. IE's experience is replicated in so many families up and down the land, and must cost the country a fortune as these children could become productive members of society, but instead are doomed to become too traumatised to function in too many cases. In layman's terms too many are "PSTD" victims before they've even hit their teens.

Is it really so hard to provide a mainstream academic curriculum, in small class sizes that incorporates a subdued sensory environment? My mother attended an institution like this - a small rural village school during WW2.

Wouldn't this be far more cost effective and efficient than the current dogma driven insistence on forcing these children into ever larger, more overwhelming mainstream environments? Even the ABA community does not really seem to address this.

With the push towards the super primary of 1000+ pupils the issue of where to place these pupils is going to become ever more urgent, with more and more children becoming an unwilling part of this miserable minority. The net this minority encompasses a ranges of formal neurodevelopmental diagnoses that goes beyond just those with ASD.

OhSoVintage Fri 14-Mar-14 10:13:06

What your advice be with a 7 1/2 year old girl that have many AS related issues outside of school both at home and at out of school clubs that can be quite extreme and effect the whole family yet at school presents very little issues at all (she did at nursery but unfortunately that teacher has left!)
We are in the process of having her issues looked into but I have a real fear that it will be dismissed as soon as they assess her in school.
She is at a very small school and attended the nursery and cheche there so has known friends and teachers since she was a tiny baby and feels very secure within that enviroment which is great but I know this wouldn't be the case if we had to change school because of how she is at clubs. Is there anything I can do to help with the assessment so that I don't just look like an over protective mother. I want it to be picked up early so we know what we are dealing with.

StarlightMcKingsThree Fri 14-Mar-14 11:36:04

Hi Richard,

Do you have any suggestions or advice for Governors of mainstream schools with a SEN remit?

Upandatem Fri 14-Mar-14 12:53:05

I really don't like the dismissal of anxiety and behavioural problems as all being the 'fault' of the child, or that of a parent who is presumed to have enabled those responses.

The responses of a disordered and confused brain that is struggling to process the world is rational and real, we all have to change to help these kids, not just expect them to do all the work on top of all the difficulties they already have.

Will be really interested in the webchat, thanks for agreeing to do this.

StarlightMcKingsThree Fri 14-Mar-14 13:41:59

Oooh, another (hope I'm allowed).

Where would I start in learning about the potential of Mindfulness for my 7yr old with moderate functioning ASD, and then giving him the skills?

How do you teach it?

Thomasthetank Fri 14-Mar-14 15:58:13

Our two year old has many signs of possible autism including speech regression, babbling instead of words, lack of pointing, no response to name or others pointing, poor understanding of simple everyday speech and constant meltdowns. He also is felt to have sensory issues after being observed at a toddler group for autistic children.He has an initial appointment with a community paediatrician in early May to discuss assessment along with referrals to portage and SALT.

Which interventions (carried out by professionals and ourselves) do you feel are most effective for a two year old on the autistic spectrum?

bialystockandbloom Fri 14-Mar-14 16:56:34

I hope I can ask another question too:

How do you think the school system should ideally be set up to ensure children with autism are best taught? Do you think the current system of mainstream (which might accommodate the child but not necessarily do much in the way of teaching non-academic skills) and special schools (which by nature means that children with autism are not integrated with mainstream peers, but have a curriculum which is more tailored) is the best model? Are you in favour of this system, or would you prefer to have a single system - and how would you best support the children with autism in a mainstream setting?

All in an ideal world, obviously wink

Sorry, several questions rolled into one, but hope it's coherent blush

ProfessorRichardHastings Fri 14-Mar-14 17:13:51

Thank you for all your questions so far. Some tough ones, and some I know are beyond any expertise of mine. However, I will make a commitment to respond to every question posed (eventually) even though I suspect we'll run out of time to get it all done in an hour on Monday evening.
Keep the questions coming!

ouryve Fri 14-Mar-14 17:26:40

I would like to second bochead's question about the sensory environment in schools. We've just secured a place in a very small, specialist school for DS1. When we were making our initial school visits, both of the local authority schools had large, cavernous, echoey spaces that would have been torture for him. I put my hands over my own ears in the sports hall of one of the schools because there was so much feedback just from 3 adults walking into the room.

There is a nationwide dearth of provision for academically capable children who are, all the same, sufficiently severely affected by ASD/AS that struggle to function in a classroom with 25-35 other children and in a school with hundreds or even a couple of thousand other children. Even if a broadly sympathetic, smaller than average mainstream school is found, there is no guarantee that it will be small enough to make any difference and there is no guarantee that all staff, particularly in secondaries, will have sufficient training and experience (or sympathy) to help a child who is anxious and becoming distressed or to work with the subtle higher level language difficulties many of these children have. These children often end up either having violent outbursts or self harming in response to the stress that they feel in school and commonly end up out of school for lengthy periods.

I don't believe that the units that some LAs have set up within school are necessarily the answer, as they still have the threat (as perceived by the child) outside the door and many are heavily reliant on the children still attending mainstream classes.

The provision I have secured for my son is fairly expensive Independent provision in the non-maintained sector. What do you suggest that local authorities need to be doing to provide and education for academic capable children who need a significantly quieter and less stressful setting and to avoid ending up with parents requesting provision that is quite expensive because there is no other suitable provision?

AgnesDiPesto Fri 14-Mar-14 17:48:48

What research is there to support interventions for children once they get past the EIBI stage? We've had an ABA programme from age 3 and its great, still achieving steady progress and working well. Its become a very flexible, creative, real life based programme and fits well into mainstream school.

But DS is 7.5 now, he's classic autism, severe speech delay, little social interest, high repetitive behaviours, very passive and unmotivated (outside of ABA). He still very much needs the framework and expertise of an autism specific approach and will for the foreseeable future. He's too bright for our local MLD/SLD special school (he's above average ability in non language based learning). With the support of ABA he is really exceeding expectations given the severity of his autism. What research is there we can point to to stop ABA being pulled out too soon or do we just have to rely on his individual progress? There is lots said about children who do amazingly and 'graduate' from EIBI and those with poorer outcomes who go to SS, but what about the bunch in the middle who just plod along steadily? I worry if we end up back at tribunal there isn't much of an evidence base to point to to say these are the middle group who need long term autism teaching but will hopefully get there in the end.

His mix of super bright but super autistic doesn't seem unusual - most autism authors / bloggers e.g. Temple Grandin, Carly Fleischman seem to have been similar to DS at 7 and ended up at college. But there is a sense ABA should be for a few years at most then thats it you should have transitioned off it. But DS could not be in mainstream school without the support he has (and the 1:1 work out of school that makes school a success) and there isn't around here a viable special school option that would match our success (or expectations).

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