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.

In the UK, Mothers are not blamed for their child's autism but they are blamed for any impact of their child's autism on the status quo, or on the potential cost of them, or any needs they have for adjustments or alternatives.

For all its faults at least in UK our kids have a legal right to have their needs met. While the law isn't perfect and sometimes gets it wrong we are lucky to have a system which at least tries to protect our kids. It must be very difficult in a country where you can't even try and hold professionals to account.

I'm shocked at the attitudes towards autism in France.

There are many holes in the uk system you have to navigate and I won't pretend it's an easy ride - however the attitudes are far better and your DD will be entitled to an education so sounds like a better option.

DS' fabulous school ridiculously blame a number of his problems on the fact that he was HEd. Why don't I care?

Because they have solutions.

When there are solutions, why waste time arguing about the cause?

Thanks StarfrightMcFangsie good to know about regional differences too. How unfair though!!!
Here in France all parents associations are pointing at countries like Belgium, Italy, Sweden, and the UK to show how kids with ASD should be treated.

zzz Funny you mention BF above (I'm guessing so?). I bf'd DD until she was 2.5 (officially stopped when she was 3, but we didn't tell anybody). Personally I loved BFing and we had no problems, but I only continued past 1 year because she was severely allergic to cow's milk and wouldn't take the nasty hypoallergenic formula. And she just wouldn't sleep at night and I was too exhausted to stop. Anyway, those psychiatrists here immediately were shocked by it, and thought her early ASD symptoms were all my fault, I was causing an infant psychosis to my 18 month old because I wouldn't "let go of the babyhood"... needless to say I didn't listen to their bs. Just goes to show if they want to blame the mom they'll find a way.

'I just think they don't know what they are talking about.' Quite. However, since they are receiving a salary then need to pretend they do.

Wish their terms of employment were about listening and supporting the parents instead of imposing their psudeo-analysis of a situation in order to try and find justification for slotting the family into already existing provision regardless of it's evidence-base.

Also in France with a DS with ASD, ADHD and anxiety.
Following the thread with interest.
FWIW our experience hasn't been too bad but I know of families with kids on the spectrum who are really going through the ringer with their DC schooling.

Fully agree! I tend to talk too much but now I speak in short sentences to see what they have to say.
zzz DD is an only child and I've been told her autism would be less severe if she had a sibling (or a dog or a cat) to play with - they are trying to find whatever flaws to justify themselves easily. It's so much easier when you can put families in a box.

Sadly I've started thinking the only way forward for ASD is that more of these psychologists/psychiatrists/GPs/self proclaimed ASD "experts" have a child on the spectrum, to make them realise their logic just doesn't make sense.

esk It doesn't work. Professionals who themselves go on to have a child with disabilities suddenly find they are labelled 'over-emotional-anxious-mother-who-can't-cope-with-the-idea-that-her-child-won't-come-to-much' despite their profession.

They become as powerless and thrown in the general 'pita' basket with the rest of us.

Starfright I don't know, at least they have medical credentials to tell people off, unlike the rest of us (nevermind my useless business degrees, I'm now just a SAHM)... especially those who think they've got it all perfect in their personal lives. People like them need a big shake.
In many ways I think they just react like regular people, allowing themselves to judge and make nasty comments about our parenting style or our kids behaviour.

DD is 21months younger than ds. It REALLY helps. However the attitudes prevail.

The difference between them is of course because she is a girl

But seriously, it does make things easier having another child. The blessing in our lives and in our son's was such that we had another. He's now 3 and completely ridiculous and hard work so I might re-think that one, though we'd never send him back.

We are in a happier place now and it is completely connected to the fact we have provision in the private sector and have been able to jettison the so called 'professionals' They did so damage to DS (and to my mental health) now we only have to work with people we like and respect and who understand DS. Parents are far better at judging quality than anyone else in the system - the Govt should just give us the budget and let us buy the provision - being the paying customer instead of the 'client' makes so much difference as it takes away that control that professionals often seem to abuse.

Professionals here are equally patronising as in France. I feel lucky that I had the strength to not believe what they said about DS not being able to achieve or talk because his ASD was severe....most importantly I am gratefull to have been able not to care about their disapproving look when we turn to ABA. Actually, there is another option in the Uk; there is a concept called "free school" which are founded by parents, who have to directly prove to the Department for education that such a school is needed in the area. If they make their case, then it gets funded directly by them. The fact that they are outside LA's control but are still state school is a benefit.
I know of this school that recently opened, ASD specific but based on ABA principles (no Teacch). Would that not be a possibility in France?
Also my nephew (he leaves in France) is dislexic and attends mainstream school, but a special class with less pupils. So some school seems a bit more flexible in their approach.

Agnes what you say is very true in terms of quality service, or value for money. The problem of course is many families can't afford going private. Here in France speech therapy is repaid by social security 100% if your child has autism, 60% by default otherwise. I pay 42€ p. session for OT, so roughly 170€ a month, and I know families who can't afford it and depend on free services.

liliuk the special class you mention for your nephew is what I'd like for DD. There is a pretty good ASD-specialised class near us but the waiting list is huge. The French govt wants to reform all special needs classes though, and mix all pathologies together (they used to be "kind of" specialised), which according to many therapists is going to be a good idea only for "mild" special needs, and really bad for non verbal ASD kids like mine, who need heavy support. That's the main reason why the infant school wanted to send DD to an institution instead, predicting that she won't cope, before even knowing... We had a couple of meetings this week to explain why she must stay in the school system no matter what.
This thread has helped me lot

When I say private I mean the Local Authority has been made by a tribunal to pay for provision in the private sector as their own provision was found not to be good enough for DS needs. Thats what I mean by having a legal right in UK to challenge the provision offered. For us that means we have been able to get services we otherwise could not have afforded.