Autism - can you summarise the UK system to me (need to compare other countries)

[eskimomama]

Hi all,

I haven't been on MN for quite a while as we left the UK and moved to France when my DD was 12 months old. She's now 6, and she has ASD, and is non verbal. I'm French myself, DH is from Ireland.

I'm having huge issues with the French school system now, and I wanted to ask you moms (and dads) if you could tell me how it's really like for young children with autism in the UK school system.

Here in France, kids usually go to infant school from age 3 to 6, then primary school from 6 to 11. Kids with special needs have to have an aide to be accepted in infant school. My DD had only 9 hours a week for 3 years. The rest of the time we took her to a special needs kindergarten, but they believe autism is psychological rather than neurological (the whole "blame the mother" theory.......) so they don't help very much at all. At least it was a friendly kindergarten rather than staying at home with me - because of course I had to quit my job.

From age 6 there are 3 options : mainstreaming with an aide (extremely rare and only for super high functioning kids). Special needs class inside a mainstream school (about 10 kids with special needs, and not just autism), with a teacher and one aide for the whole class. That would be my preference for DD - even if mixing all handicaps can be a real challenge for non verbal ASD kids.

The third option is basically a mental handicap institution, as autism here is regarded as a mental handicap (long story I know...). This is where the majority of kids with autism end up because of zero support and zero early intervention unless you fight like mad for it (DD had some). Some of these institutions are better than others but overall they are NOT focusing on modern methods of education (maybe 1 morning a week?), it's more like a nursery for mentally handicapped young children and teenagers.

Now the school administration wants to send my DD to one of these institutions, which I don't want. I believe she's able to learn and it's obvious that she learns way better in a school environment with lots of structure.
I'm terrified that she will regress in one of these institutions.

My main question is : what happens to 6 year olds with autism in the UK (and any other countries welcome!!)? Do you have the equivalent of these mental handicap institutions for kids with autism? I don't think so, my understanding is that kids with autism are always sent to school no matter what (special needs class or not), but please let me know the reality, so I can explain to the school commission how it's really like in the UK and elsewhere.

Many many thanks for your feedback.

[SleepIsForTheWeakAnyway]

I've not heard of a mental institution of asd kids here in the uk. That sounds awful. I don't know if I understood right but it seems to me that they are writing them off at 6yrs old which is ridiculous if that is what it is.

My boys both go to mainstream schools. My eldest ds went to a mainstream school that had an asd provision. The idea is to have the DC in mainstream setting as much as possible with the least amount of support as possible but there were teaching assistants available and there was a quiet safe place for my ds to go if he needed it. He thrived (level 5's at yr6 SATs and lots of friends) and is now in a secondary school with a similar set up but is managing without support. It's more of a safety net.
Ds2 goes to a mainstream school with next to no support. Academically he doesn't need it but needs help with the unstructured part of the day eg playtime/lunch etc.
My dnephew goes to a mainstream school with a special needs class. He spent the first few years of primary separated from the NT kids but I think he is mixing more now (he is 7)
That's the set ups that I have experience of with the asd DC in my family.

Best of luck in getting your dd into the best school setting for her.

[eskimomama]

Thank you so much SleepIsForTheWeakAnyway.
Are your DS both verbal?
You are right saying they're writing them off at the age of 6!!! It's exactly that!
I can see DD needs time to learn things at different stages. She loves letters but hates numbers as she hasn't grasped the concept yet. But I'm sure she will. Just not on her own...

The problem is that her being non verbal stops everything. Mainstream teachers don't know how to teach her, and say she's behind in everything - which she is, after years of not being taught as she should be, but def not due to her lack of abilities. Mainstream would be impossible at this stage. I don't care if she learns to read at the age of 8 or 9 rather than 7, as long as she does.

Great to hear you found good solutions for both your DS and also your nephew did.

[eskimomama]

thank you PolterGoose I will try and move the thread to SN Children.
It all sounds very good in theory for the UK system, but how is it practically? I'm guessing some schools are better than others, according to the teachers training etc.
Do the special schools use methods like ABA or TEACCH or a mix of everything?
What about waiting lists?

I'm starting to wonder why I didn't go back to the UK after the dx... was naively thinking the French social security was better than the NHS

[SleepIsForTheWeakAnyway]

Funnily, both of my ds's are verbal but ds1 was non verbal at school until about year 5 (9-10yr old) when he got comfortable and confident. He was fine chatting at home but at school, nothing. They gave him a selection of cards with common wants/needs (eg toilet/drink etc). He also wouldn't write at school (again he would at home) so they provided him with a laptop to do his work.

Fwiw I think you are approaching your dd's writing and numeracy perfectly. They will do it when they want to do it.

I've never heard of how France treats its citizens with asd before. It just seems so damaging!

[DawnMumsnet]

Hi there,

We're moving this thread over to our SN Children topic now, at the OP's request.

Many thanks to everyone who's contributed so far.

[Liliuk]

Hi there, I am French myself, happily living in the uk. You can pm me if you like. I have an ASD ds .
These institution don't exist (day hospital in France?). A child has to be in education and the state must offer a placement to meet the child's need. This can either be in mainstream with additional support, sometimes 1-1. Or he can be placed in a specialised unit within a mainstream school (like a small class to do academia, then inclusion for sport, lunch, .....whichever suitable. Or he can be placed in a special school. Most of these are multiple disorder, not ASD specifics, which can be a real problem. Occasionally, state will fund home education or an ABA program, usually only if they don't have an option to meet the child's need. Quite often, the vision of the state and the parent's vision of what it is to meet the child's need is different, so a parent can appeal to SEN tribunal if they want (or can).....
Anyway that is the general idea, but law changed recently so parents should have more say.
Hope it helps. I never met anyone here who believed parents were to blame, one of the reason I wouldn't go back to live in France.
To be honest, I have had to home educate (self funded ABA) my DS for a while as there were options but was not happy with it, so it isn't always easy, but at least none of the psychoanalysis bs....I do hope it works out for you, must be hard.

[Liliuk]

Oh, and therapy such as OT (ergotherapie) and speech and language visits school directly, whichever the setting.

[AgnesDiPesto]

The reality where I am (a rural County) is that children either go:

1. To a generic special school that teaches all disabilities - the school takes children from age 2 but places are often gatekeeped until children are much older so its rare to find children under 5 there. The nursery doesn't even run all week - children can only go 3 days and finish at lunchtime on fridays. So it works out about 15-18 hours 'education' a week. There are 2 schools one for severe learning disabilities (IQ under 50) and one for moderate LD (IQ under 70). Except they don't actually test IQ and tend to accept children on inconsistent grounds - children with complicated medical problems are top of list then children with challenging behaviour. some other children with 'just' autism will get in but usually only if a family takes legal action / the authorities are concerned about parenting capacity or safeguarding /the child has been excluded from mainstream schools or deemed to have 'failed' in mainstream (see 2). The schools have some knowledge of how to use visual supports, PECS, create an autism friendly environment etc but use an eclectic teaching method - which basically means trial and error. there is no set curriculum or much autism specialism involved. A lot of time is spent riding horses, going swimming and doing things that children like but which don't really push them academically. They stay until 19 and then get dumped out the other end onto families or some might get access to adult services or residential care - which are underfunded. If they are lucky they might get to do some voluntary work or go to a day centre. None of them ever get any paid employment.
   

1. To a mainstream school or nursery where they will start with no 1:1 support - then support will be dripped in slowly e.g. a bit of 1:1, making the environment autism friendly (e.g. giving them a tent to sit in when anxious, using visual symbols on a keyring, using sign or PECS, giving them a workstation facing a wall), giving the child a fidget toy. The Local Authority tries to string this out for a minimum of 2-3 years they call a 'graduated approach'. Class teachers are not taught any actual interventions the autism friendly 'supports' are passed off as interventions rather than being tools that should be part of a more robust teaching method or intervention.Nor are staff given any training in how to manage or improve a child's behaviour / speech / social skills. Frequently children do not thrive in this environment - fall further and further behind, get anxious, frustrated and frequently aggressive / self harm, develop mental health problems. Then if the child is violent enough / parents take legal action they get transferred to one of the special schools above (regardless of their IQ because the Local Authority by then just wants somewhere cheap to put them and doesn't care about their underlying ability anymore). Most children with autism will be kept in mainstream until they are 8+ and only moved once the school has excluded the child.
   

1. Some parents reject 1 and 2 and fight through the legal system to get their child placed in private provision (e.g. home programmes, out of area schools, autism specific schools, residential schools) or give up and home educate their child. These child do far better. There are also some parents setting up autism specific Free Schools and units around the country to fill the gap. Again you often have to take legal action to get in.
   

Children who are non verbal may go to either 1 or 2 - speech or progress isn't the deciding factor which is more to do with whether mainstream can manage their behaviour - but most non verbal children will be in special school by age 11.

There used to be an option 4 of units attached to mainstream school for children with autism but locally these have all been closed and children forced full-time into mainstream classrooms now.

I do know that the ABA provider we work with (Autism Partnership) has been to France to train workers who wanted to be able to offer ABA - so there must be some people in France trying to find alternatives. I have also heard of lots of families moving to Belgium and working in france so their children can escape the french autism education system.

It would be very rare for a child under 11 to go to residential school in UK - some will take children from 8 but that tends to be where the family really cannot manage via other means (e.g. respite care at weekends etc). The criteria would be much more about whether they had very challenging behaviour than whether they were falling behind academically or were non verbal. If the children are not causing a problem the authorities are not too bothered whether they are learning or not. Some families will go to a tribunal to challenge their provision and get their child into an autism specific residential school. This would be very rare under 8 and more likely 11+.

Cost is the deciding factor in UK - residential school placements cost £100,000+ while mainstream with full-time 1:1 or a generic special school costs £15-20,000 a year so children usually have to exhaust options 1 and 2 before they get to go to a private autism day school or a residential school.

[Branleuse]

OP, In the UK, you have the right to a mainstream education for your child. In practice that means that they try very hard to mainstream educate children, whether its approprate or not. You will be very unlikley to be forced into any kind of special schooling, in fact even if its necessary, you will likely have to fight for it either a little or a lot.
Two of my children (but possibly all 3 as waiting for an ADOS assement for dd) have ASD. One is in a SEN school, and the other two in mainstream primary. In mainstream, my ds has an educational statement, which means he is entitled to one to one help in the classroom for 25 hours (i think) a week, and whatever adjustments they need to make to enable him to access the curriculum and meet his potential.

I think the british system for SEN is actually excellent in most cases, and especially in comparison to france.

My dp is french, but we live in the UK and we have wanted to move to france for years, but the provision and attitudes towards SEN is what has put us off, ive actually been warned off by several french friends. Its very sad

[marshallmum]

Hi OP,
I had the same experience as you... I am mum to a 6yr old with ASD, and lived in France until he was 3.5yo (I'm English, DH is French). We were very settled in France, but moved to the UK as we were told very clearly that DS would "maybe finish primary with lots of care and attention"... that was about as much as anyone would even consider. DS was not accepted in maternelle (non-verbal and with challenging behaviour). He was not accepted in the out-of-school clubs (centre de loisirs etc).

Fast forward a few years... DS is now in yr2 in a mainstream school, with a full time ABA tutor. He is doing really well, integrated in the school, has friends and is really happy. I recognise that the setup we have here is very lucky compared to other families, and while we have had to fight to get our current provision, the "worst case" would still have been a thousand times better than in France. There is far more acceptance of disability and difference generally here than in France. I don't really blame the maternelle for not accepting my son - it would have been impossible for them to deal with him without extra help, in a class of 30 kids. But the system is not set up to even consider adaptations to learning approaches for kids who don't all learn in the same way.

The other thing to consider is what happens outside of school. One thing I had underestimated is the inclusion/provision/integration for clubs, sports lessons etc. Here you get discounts for 1:1 swimming lessons for example, or specific sessions for children with disabilities, or out-of-school clubs for children with SN.... those types of activities don't exist (as far as I could see) in France. Even family stuff like visiting a museum - here you get a carer ticket free most times, which makes the visit more affordable (that can be a consideration if you are weighing up "do we risk it if DS doesn't like it/can't manage it".)

I hope that helps. Good luck with whatever you decide. I know things in France are changing but it is still far behind in its attitudes.

[ouryve]

DS2 was non-verbal when he started school (at 9.5, he now has limited speech, which is very unclear and mostly echolalic) and he has been in mainstream all the way through. He can rarely access mainstream lessons and activities, though - the fact that he is still in the school is purely down to the physical structure of the school (small with a secure site) and the caring ethos. He's always had 1:1 even if the local authority have pretended he doesn't needed and he's always had the same 1:1 who gave up waiting for advice and has worked out herself how to teach him. Some days she can't get him on task at all, others she can get a full morning of really intensive adult led activity out of him.

Of course, we're now at the stage where we need to choose a secondary school placement for him. LA have shrugged their shoulders and grudgingly accepted that it will be a special school (I made it very clear that I though mainstream would not just be inappropriate but unsafe for him) but are under the false impression that he will be fine in a noisy class of 12 with 3 adults.

What will end up happening is that LA will insist that local crap special school is appropriate and I, like many other parents, will have to pour considerable financial and emotional resources into demonstrating that he needs a specialist placement. There is an LA special school which most likely fits the bill, but I'll have a fight on my hands to demonstrate that either that or an independent specialist school will be the place. I'll end up paying for private educational psychologist, speech and language and, probably, occupational therapy reports and most likely having to go to the trouble of taking the LA to tribunal to demonstrate that I'm making a choice for him that meets his needs and not merely on a whim aka "parental choice".

Part of the problem of getting his needs known to the outsiders with the chequebooks is that he is well managed and sufficiently well loved for everyone to be incredibly patient with him, even though he can be extremely challenging (I had to eat breakfast in the dark, this morning, due to the extent of his obsessive behaviour, ffs!)

It's so disheartening, but everything I read about Autism is France makes me want to weep, eskimo. You would hope, in the 21st century, that Elle s'appelle Sabine would be based purely on historical attitudes, but clearly not :(

[eskimomama]

Thank you soooo much everyone for all your informative feedback!
Now I realise how much I missed MN support!
Why did I ever go away??
It does seem that despite the law it can be pretty stressful too in the UK according to where you live and local teacher/school support.

Liliuk The institution I was refering to was IME (Institut Médico-Educatif), it's one step above day-hospital (the nightmare of every parent of a SN child) but the level is quite low. In many ways though it sounds like some of the UK special school mentioned by other posters, ie more activities than education, and certainly no learning goals. They also have OT, speech therapy etc but not really up-to-date with modern methods. The big difference is that those IMEs are not reporting to the Education Ministry but to the Health Ministry - which I think is a crucial difference as it means the child is taken out of the education system by definition. And no chance of ever going back. I'll def PM you.

zzz yes she is completely non verbal . She has been going to speech therapy since she was 2, and OT (privately) but it's definitely an issue to teach her and make sure she understands and generalises later.

Agnes thanks so much for your detailed feedback. It's very useful to know how things are in a rural county too. There are ABA options here too (very few though and almost regarded by some as a rebel method!!) - either private structures or charity funded. We did apply for it when DD was 4 but only got the approval when DD was almost 6, which (long story short) we thought was too "late" to start ABA, especially as these structures stop at age 8. She already had speech therapy and OT that didn't follow ABA but more a mixture of methods as she is very responsive to verbal encouragements just like a NT child - which is a big plus. I think I will forever be wondering if we made the right decision. There is also plenty of "bad ABA" from educators who think they've got it all figured out but do more harm than good - but from what I read this happens in the US as well.

Branleuse I think you made the right choice. We decided to stay in france as we had a fantastic OT and speech therapist, who supported us massively saying DD could manage just fine in a special needs class within a mainstream school... We also stayed to be close to my family, which is also invaluable. But let's see what happens next year.

Marshallmum same for you I think you did the right thing going back to the UK especially as you ended up in a very good area. But the école maternelle should have accepted you regardless, with an aide and part time! There is no valid reason even here that they could have refused. All SN children at the very least go to école maternelle here. The quality of the aide changes absolutely everything though.

Ouryve thanks for your detailed feedback too. It sounds like so much tribunal hassle and £££ to make sure your DS gets what he is entitled to!
Our 1:1 aide up to now was the same as yours, she just knew how to teach DD out of her own common sense and motivation which are certainly not as common and they should... I don't want to blame teachers who haven't been taught how to teach to non verbal kids.... but seriously... if an underpaid young girl with no training whatsoever can do better than them... why can't they try a little bit?

[eskimomama]

Just to keep you updated - I had a big argument with the psychonanalytical useless b*tch of a psychologist this morning who insists DD should go to this day-hospital instead of the special needs class we want and even insists she should take anti-anxiety medication, which is standard treatment here for ASD kids. It was pretty bad. Later I could speak with our (private) speech therapist and OT who were very supportive and gave me some advice on how to leave these useless psychiatrists/psychologists behind and follow our own path. Really hope it will work out though.
Now I think I need a little drink (but don't tell the psychiatrists!)

[ouryve]

Oh, we had a fun thread on here, a while back, regarding a psychotherapist offering to fix the relationship between a mother and an autistic child for a small fee the price of a good car

And anxiolytics can be great for some kids with autism who have anxiety that can't be managed by other means, but there's loads of research out there demonstrating that they are otherwise of no use in autism.

[StarfrightMcFangsie]

You think there's a system in the UK?

[StarfrightMcFangsie]

Oh, now I've read you're in France

The system in Ireland is different from the UK or the rest of the UK depending on which bit. ABA is more widely available there for one thing.

If you want to be on the mainland you need to avoid Scotland. Wales is a better option than England (because of the way funding is organised) but still woefully behind Scandinavian countries and the US.

In Wales and England, no two LAs do things the same way and tbh, no two children within the same LA have things the same way. It is all very hit and miss and appears to have little to do with parental knowledge or quite frankly, in many cases, the law.

[StarfrightMcFangsie]

But the goalposts keep moving. If you go through a process with one child, there is little point in expecting it to go that way again. By then, each service will have been commissioned to another organisation with a new names for job titles and changed criteria that is so new even the implementers don't quite understand it.