Boolocks, bollocks, bollocks. ASD unit refused...

[silverfrog]

Title says it all really.

dd1 has been refused entry to the ASD unit because she is too passive.

The head of the unit came and assessed her, and ability wise, she is fine. She then observed her at pre-school (mainstream, with support) and her conclusion is that dd1 needs more help than they can give her. She is recommending the local special school.

There is NO way dd1 is going to the special school. She will be totally overlooked there, and not stretched at all.

We really thought, after the home assessment that we were in with a good chance - our biggest concern was that dd1 would not be seen as able enough to go to the unit, as she (unsurprisingly) reacts negatively to strange people being around, and tends to go very quiet and unco-operatve.

she handled the home part fairly well, and also the report that has come back to us states that she complied with everyhting asked of her at pre-school.

the problem is that dd1 did not instigate anything, or make any moves to initiate contact (although she did, when asked, answer questions and comply with tasks - sticking, sorting etc)

just what do they want from her? she is only 4, and tbh, aside from being quite time intensive (if not given fairly constant support she drifts off into her own world, and wanders about) she is a dream to have in a classroom. Very little challenging behaviour (they're lucky - they don't have to give her baths ) and usually, a huge willingness to please. she does get a bit edgy if she doesn't understand what she is supposed to do, but that's only to be expected.

so, if the ASD unit can't handle her, where on earth are we supposed to send her?!

Can i go off the beaten track a bit? What traits does your dd have that make her ASD? Only asking as im pondering my own dd.

oh, she si very clearly ASD.

She didn't point to things (still can't point to a tree, say, but can now point out things in a picture)

She has no idea about peer relationships - it's almost as though most children do not exist for her (she is better with adult realtionships)

she has a severe language delay.

So, the whole social side of life passes her by. She appears to be academically able (sometimes hard to tell, as her language delay obviously means she is not on the same level as other children her age).

what sort of things are worrying you about your dd? how old is she?

have you looked up the CHAT test and similar (sorry if your dd is older than that, but thinking back, did it apply?)

if you search the archives, there is tons of info on ASD

You've lost me completely on the CHAT stuff
She's now 5. I'd say she developed 'normally' really, but struggled BIG time with nursery. She cried every day for a year and always said she didnt like it. We had BIG problems when she started reception year at school. She could only wear a certain pair of socks, skirt and coat, as thats what she first started school in. She can't cope with change in the classroom, day visits, any activities that aren't the norm. She doesnt initiate play/talk with other children. She did have help at school from a counsellor but all i ever got told was she's just shy and quiet. She thrives on the structure of school, she can't just wander looking for something to do, she needs to be sitting at a table either working or being told to go there. She's now in year 1 and things are much easier. I think because it is much more structured she finds it easier. They've recently had a day where you could take your favourite teddy into class and she did this without fuss! Last year she cried constantly when they had a teddy bears picnic, and never took her teddy in.

I'm starting to wonder what the point of ASD units is cos I've heard a few cases of children like your dd who don't get in. They seem to be aimed at a very specific type of ASD child. I don't see what more your dd could have done - much more and surely she wouldn't even need the unit!

Have you checked out the special school? My ds ' school is quite good at teaching to the capabilities of each child and he has learnt a lot of skills that will help him be independent and in social situations. I know they vary though - his school is mainly ASD pupils.

Hi, Silverfrog. I don't have much experience in this area, as we are still going through dx with my dd. However, I know that there are a lot of experienced MNers who may be able to help.
I feel for you, as my dd gets overlooked due to being passive and it is so frustrating. I hope you manage to get the help you need.

Hi silverfrog, poor you you must be very angry and dissapointed, i thought AS units were for children with ASD!! silly me they obviously aren't. Can i just ask why you would not consider a special school? my dd who is nearly 5 goes to a special school and like you when it was first suggested I was horrified and adamant that she would not go there but all this changed following several visits to the school where i was allowed to sit in on lessons and talk to all the staff.My daughter is in a class of 7 with 4 staff and she is definatley not overlooked. 4 of the childre in the class have ASD and all of the children have individual education plans and is stretched in every aspect of the curriculum, and is very happy to go there. Maybe arrange a visit to afew local special schools and see what they can offer, you may be surprised. Hope everthing works out for you and dd

We have the same issue but DS1 is not going to school 'til next year so we have time on our side. I don't think he would be ready for an ASD unit if he was going now but I am (fairly) confident he will be ready by next year but I'm getting negative vibes. He is passive too. They don't seem to like passive ones I suppose

Silverfrog - You DD sounds very much like DD1(6 AS) friend at school, she also has ASD along with some mobility problems. She is totally non verbal (probably why DD1 like her ) and has a place at the school SN intergrated resorse unit, when she first started in reception she was very isolated and spent most of her days in the IR unit, however after a couple of terms she is now intergrated into the M/S classes for 80% of her day, she is thriving there and more importantly is happy and always has a smile on her face.

If i was you i would push for a place for her, surely she should at least be given the chance to see how she goes.

frazzledbutcalm Your DD sounds alot like my DD1, she is has also just started Y1 and is dxd with AS.

Do personalities not count alongside ASD then? Are they only admitting certain personality types with ASD? Seems like this is what they are doing.

Thanks for all the replies. It is so infuriating.

We have read up about the local special schools (there are 2). the one closer to us has been redesignated for severe and profound needs (not dd1) and the one slightly further away seems not to be able to stretch academically at all. They also have a fairly shocking ofsted, and if it were a mainstream school there is no way I'd consider sendng dd there with it's current level of input/results per pupil, even taking into account extra needs and difficulties.

Neither school are set up for autism as such, and both will become less so, as in the recent county reshuffle, the unit that we were aiming for was designated as the autism centre for the county, so will be expanding to take even more ASD children (alhtough presumably not passive ones!)

Dd1 just seems to be falling between all the cracks - she is not able to be in mainstream (too distracting for her, even with support - she ends up coping, but with nothing left for her to progress), but since she is able to cope with it, her propsed statement came back with 7 hours 1 to 1.

She is too able for the special schools in this area (the one she would be most likely to go to has no pupils at the end of KS1 not on P scales; dd1 is nearly at the end of the P scales already, so she would not have appropriate peer role models)

she is able enough for the ASD unit, but apparently not independent enough.

So, because her difficulties lie in initiating anything (whether play, going out, even having a drink) she is deemed to be too difficult to cope with. the unit has said she needs full time 1 to 1 (but have not said why she could not have this at the unit), but I expect this will be ignored when it comes to her statement re-write.

Our local mainstream school (well, the one that would suit her best) has a lot going for it, if we could get the 1 to 1, BUT it has a mixed class system, so there is a chance that dd1 would rapidly fall quite far behind the level of the rest of the class - and even with splitting the class according to ability, this would then be confusing and distracting for her.

It is a real mess.

We are thinking about whether we want to appeal, and try to find out whether the unit would take her with a 1 to 1 (to be faded as appropriate as dd1 progresses)

I would agree on special schools not stretching kids enough. (i'M A SALT IN THIS FIELD and have s daughter with a comm. disorder). Lovely as the ones i work in are, the pace is not hard or fast enough for kids like yuor dd.

I'd start getting shirty.
Demand to see inclusion criteria and relewvant policies. Ask to see your file and copy relevant parts. Go to your SNAP office and ask them to help.

Start kicking off. It works

Apart from the language dealy she sounds an awful lot like me as a child, especially regarding the difficulties initiating things and the daydreaming off into own world. Actually, I'm still a lot like that, still have a lot of difficulties with initiating and still like to daydream, but can obviously concentrate on things when they're needed now.
Like your dd I fell through the cracks a bit, it wasn't that I wasn't picked up as being different, I was, but the overall assumption was that whilst I undoubtedly was different, since I was passive it was felt I'd be ok . Ironically four of my primary school years were spent in a near ideal environment, a smallish village school that had a structure and routine about it which made things far more easier to cope with than the last primary school and the secondary school I attended. I actually think that an ASD unti attached to a mainstream school would have helped me enormously, I was too academically able for the special schools and yet too emotionally and socially immature amongst other things to cope well in a normal mainstream environment. I got by because I was passive, couldn't initiate and couldn't say when things were wrong. If I was unable to tell my parents throughout the whole 5 years of secondary school that I needed a new PE Kit, or new maths equipment, then I was hardly ablke to tell the teachers about bullying, or about being unable to eat in the school hall, or if I did't understand something .
I do think that passive children can often be overlooked, or their difficulties brushed aside, through a feeling that "oh, they're no bother".

Thnaks, bullet, that's really interesting. dd1 is so likely to end up being overlooked as she is no bother - it is ridiculous.

Moondog - we have our file, and ironically, when the head of the unit came to assess dd1, she told us off for not challenging the reports in her file as "what I've read on paper does not describe the girl I am looking at".

Yes.

We know that, but unfortunatly, the reports are broadly accurate (in that dd1 does ot display skills unless prompted, and generally, she is not prompted at assessments if I am not present - ie ed psych evaluation at pre school etc, and so it is assumed that she does not know what is being asked of her.) If we push to have it amended, we are treated as delusional parents with pfb syndrome - you can see people mentally questioning whether we have accepted her diagnosis (err, yes, I was the one pushing to gt her diagnosed, as because she was so easy, and "no trouble" she couldn't possibly be ASD. grrrr)

The ehad of the unit has now added to that inaccurate pile of reports, again with a lovely piece of writing that is essentially correct, but does not outline any of dd1's strengths, just the negatives.

Entry to the unit is via assessment by the head of the unit. she, apparently, has final say so, so that she can mkae sure the classes do not end up with too much of an imbalance. And, unfortunately for dd1, they just had 2 boys start who present with extremely challenging behaviour. I think the head's main concern is that dd1 will withdraw form the noise and violence (which she will, initially) - our view is that both the boys and dd1 need to be taught ways to cope with their behaviours, and the unit is the best place for all of them to do just that.

So, the fact that she does everyhting asked of her is seen as a negative, rather than being seen as a good base to start from.

Have you got a list of private/independent special schools. My eldest son is high functioning autistic - very passive at 5 yrs. ASD unit did not want - too passive. They tend to want children who are similar to ones already there or who are going to fit in with children already there. The S&L unit didn't want him because he was too autistic and his IQ was too high for a LEA special school.

I was fortunately that in my area at the time (it has now been closed) there was an ICAN school (that specialised in severe s&l & communication difficulties). He met their criteria and as the LEA had nowhere to put him they agreed to funding a place for him.

When the school closed when he was 9/10, he again went to a non LEA SN boarding school, I didn't have any problems with funding. He is in his last year there now and will be sitting GCSEs. If you had seen him at 4/5 yrs you would not have believed it. It has been purely to the education/help he received at these schools. I would suggest you look at the ICAN website and the LEA should provide you with a list of non LEA special schools. If their unit's/schools cannot meet your child needs then they will have to fund a place at one of these schools.

I was fortunate that my son didn't have to board at 5/6yrs but there were children there being flown in from Scotland and Cornwall every week.

Good luck.

Yes, good point Counting.
Push for him to be sent to a privatre one if she cannot be accommodated with their provision.

your DD sounds exactly like my DS1, who just started at an ASD unit, this unit has kids with various abilities but all with autism, the small class size means they can have an individualised learning plan - that's the whole fecking point of a unit, isn't it? Not that every child must fit into a mould

Appeal! by law your dd needs to be arranged an education that is APPROPRIATE to her needs. If it's not mainstream, or special school, then the LEA will have to figure out something else.
You'll need reports from independent experts (ed psych, SALT) to counter their reports with

Unfortunately when it comes to SEN, only the squeaky wheels get oiled. Best thing you can do is to get REALLY SQUEAKY.

I work at a junior school with a resource for children with ASD. There are 3 places a year, and every year about 20 children apply for a place, most of whom would be suited to the school. They can't take them all.

we did look at private last year. there are 2 ABA schools within the area.

One does not currently have children of dd1's age (and so would not take her) and the other, which we went to look around, has a severe autism base - again not what dd1 needs.

I will dig out the list of schools we were sent with statemneting stuff and have another look. Certainly worth a try.

we have a private ed psych lined up for reports (have already done private SALT and OT, which LEA are trying their best to ignore!)

LEA seem to be doing their best to argue this all ways at the same time - not able enough for the ASD unit, but seemingly ok to go into mainstream with little support - it just doesn't add up!

rustybear - with respect, that is not my problem. there is no way that I will send dd1 to the wrong provision for her because of numbers. (and, aside form that, there is a place about to be available, and dd1 has been assessed as able enough for the unit. they appear to be turning her down because she is too well behaved and compliant - definitely not a good enough reason imo)

Sorry, silverfrog, I know it's not your problem, but it is the reality - there is a desperate need for more places - sadly, a lot of parents do have to send their children to the 'wrong' place because of numbers.

That's not how the law is set up though. There is no such clause as 'if the local authority can afford it' or 'if there is a place' in Education Act 1996, or in any of the statutory instruments including Code of Practice. The law says that every child must be provided with an education appropriate to his needs. This does not mean the best possible education, only an appropriate one.

Because of budget deficits and scarce resources, the burden of proof lies with the parents, whose job is then to gather evidence to show what this appropriate education would be, at their cost. That's £1,000 for a private ed psych's report, £350 for a SALT report, another £350 for OT, £200 per hour for legal advice for a tribunal appeal - it's a lot of money to defend your child's rights.

Because the law guarantees every child with special educational needs an appropriate education, if there is independent evidence to support a claim that the child needs x, a tribunal usually awards in favour of the child. An overwhelming majority of SENDIST appeals where the child has autism are awarded in favour of the child, or are withdrawn by the LA before hearing - 90% of all cases where the LA refuses to assess the parents win without a hearing.

Last year, 89% of all SENDIST appeals concerning the contents of the statement (Parts 2, 3 or 4) where the tribunal had to issue a decision (ie there was a hearing) were awarded for the parents. 89%! The reason why most parents who bother to appeal win is because the provision offered by LEAs is mostly inadequate, and thus against the law.

Autism is the single highest disability registered in all SENDIST appeals, in the latest available numbers nearly 25% of all appeals concerned pupils with autism, despite making up only 4% of all children with SEN. It just shows how inappropriate the current system is for children with ASD.

Apologies for the barrage of statistics, but this is my pet hate: the assumption that just because the right provision does not exist, or just because the LEA is unwilling to pay for it, my child should not have an education.

Quite, DIL.

It is not good enough to simply say "that is the reality".

If the situation were reversed, and it was an NT child being offered provision in the "wrong" school - eg if the only place available within a sensible distance was in a special school, all hell would break loose, as the placement would not be appropriate.

All I amasking for is that dd1 is able to go to a school which can accomodate her needs. One that is able to teach her to her abilities, and caer for the obvious difficulties she has with social interaction.

DIL thank you for all that information.

We are in the middle of this and have been for over 18 months. I find those statistics really encouraging as we will end up at a tribunal. We have had my daughter's statement rewritten to include the independent reports and are still 'in discussion' with the LEA over this.

Do you know when the changes to the tribunal format come into place? I am sure that they will make it much harder for parents.

vjg I know that they are undergoing some major organisational upheaval at the moment, moving operations to Darlington, staff are leaving in droves and they've had to hire temps to cover, lots of administrative cock-ups and we are kind of caught in the middle of it, I don't know about the new format though.

Yes, the tribunal stats are so shockingly positive for parents. Which goes to show - the only reason the current system can keep going is lack of information and lack of access to advocacy.

Speech therapy is a case in point. In a recent parents' meeting at DS1's school someone brought up speech therapy, and I said that we are waiting for the outcome of our appeal where we are asking for direct weekly one-on-one SALT. Another parent said 'you can't get one-on-one speech therapy unless you pay for it yourself privately'. Now this is probably what she has been told, but it's not true. What you have to do is 1) prove that speech therapy is an educational need - this has already been already done for you, it's called the Lancashire Judgement in case law and 2) prove that your child needs it - you get an independent SALT to do an assessment and produce a report. You appeal, and in most cases where there is sufficient evidence, the tribunal will agree with you.

Access to advocacy is a real problem for families and that's what LEAs count on. This would be a job for the Parents' Partnership to do, but most are either as ignorant as the general public about children's rights as they are defined in law, or toothless, or both. Of course, LEAs can access advocacy very easily - by paying for legal advice out of public funds.

vjg it's usually pointless to negotiate with the local authority. Of course they will ignore everything you present to them, however overwhelming the evidence. As long as there is the existing conflict of interest - the same authority is responsible for BOTH assessing for SEN AND paying for the provision - you will never ever get them to co-operate with you. Usually even when you present them with your independent reports they will not act on them until you have filed an appeal, and even then not until the day of the hearing. The best advice I was given was to stop trying to get the LEA to understand my point of view, ask them to finalise the statement, stop 'negotiating' and file an appeal. Good luck! It's so frustrating isn't it!