Applying for a statement for high functioning asd - help!!

Hello all

Firstly, please let me apologise for the fact I haven't been on the community for an eon or so it feels, life y'know!

I want to update you all and thank you for all your replies.

The upside is, we decided to appeal the note in lieu, just before Christmas (no stress involved there then!!) and we heard a couple of weeks ago, that the LA agreed to statement  After the appeal went in, we decided to get our son some OT help as the waiting list was huge (and we have since found out that our local area are no longer taking on new referrals) we decided to go private, which was the best money spent, his OT is fantastic.

We have had the proposed statement, and it fell far short of the way we see our son's needs, so I went through his appendices thoroughly, and showed the LA that it wasn't an accurate description, and asked for more provision to be provided.  Most of it has been agreed, apart from, yes you guessed it the OT, which she recommends we carry on seeing her monthly in clinic (£110 per month) and follow the exercises daily, our son is making progress already with this.  The other thing she recommended was a laptop as he is hypermobile and his joints are literally collapsing when he tries to write, and therefore leading to dislocation, pain and a reduction in writing.  The LA have also said that they will not provide this.

So, my question is are they obliged to pay for the laptop and OT clinic treatment if it is recommended and carried out by a private OT?  All the other recommendations made by her have been agreed, her appendice is listed on the front page of the ammended statement, and they've agreed to add all the OT needs in part 2, but not the provision in part 3.

For all those who are still fighting, keep at it, it can be done, his emotional needs have finally been recognised 

Mum25

reading your two posts thats like my son he bottles things up at school, and then home time is like a nuclear war zone animals going one way me wishing i could and my son melting down harder aand faster than ice cubes in front of a blow torch.

september 8th the schoools so called sen teacher reckoned they had no paper work from the school about the need for sen treatment [reckons they would follow that up]-yet odly myself sand the gp recieved one.i am fighting to get him moved yet without this so called proof from the school they reckon he is fine

Hiya,

DON'T GIVE UP!

I've been diagnosed with Aspergers Syndrome aged 17 (this should be my new catchphrase, seriously) and I suffered every single day at primary and high school. I've always gotten A's or A*'s in all my subjects (except PE, massive fail in that department) and I've always hidden my feelings about teachers or people or my subjects from school, because due to my grades they didn't see any reason to treat me differently other than to give me more work and mke me do more harder and challenging things. I always used to rant to my mum when I got home and she'd be the one to get on the phone and argue for me because I didn't (still don't) have the confidence to speak directly to teachers, mainly because I don't know the right way to do it.

It took a small mental breakdown (stayed up 10 hours straight on a school night trying to get a terms' worth of Maths accelerated homework done that night) to make mum call up the GP and ask if I could be refferred for what we thought at the time was OCD. Because they thought I may be at risk due to how long I've had to suffer through all these emotions I got referred to CAHMs, where I met with a psychologist after an initial assessment who then diagnosed me with Aspergers Syndrome.

Admittedly it took a while to get diagnosed because of trying to find a psychologist that was free to assess me (6 months or so) but since the diagnosis life at school has become so much easier, its hard to adjust to their sudden attitude change but it is easier. Teachers are more accomodating, I'm free to go to a quiet place if I need to and the SEN department are now looking out for me.

If your son's higher functioning then like me he might not know how to express himself in the school environment. I was always terrified of getting a detention or being classified as a bad student because my reputation as a hard worker was the only thing that would make teachers listen to me when I chose to speak up.

Good luck.

You're not happy, so don't take this lying down.  I'd get onto IPSEA's website straight away and give them a call.  You can appeal against a refusal to assess and a refusal to provide a statement.  When I phoned IPSEA when I was getting the runaround about even getting a referral to the ed psych, they said some LA's have a blanket practice (not admitted of course) of always saying no to a request for a statement because it's an easy way of weeding out the parents who aren't going to make a fuss.   Outrageous - they also weed out the parents least able to advocate effectively for their children, regardless of how much need there is.  I'm in Essex and I recently spoke to another mum in the know about all things SEN.  Here, you can get a statement specifically related to autism - it's entirely separate to the criteria applied purely for learning difficulties - which high functioning kids may have difficulty getting. 

It costs nothing to appeal - it might be daunting legally, but IPSEA do provide tribunal and helpline support if you need it.  They'll also be able to give you a bit of a steer on yor prospects of success I expect.  It's got to be worth a call hasn't it?  They were great when I contacted them - insightful and practical - and completely on top of the law.

As a lawyer myself, I know how many decisions can and do get turned over on appeal - it's always worth a shot.

Very best of luck!

Hi mum25,

I am so sorry to hear you are not geting the help you need, Unfourtunatly I live in scotland so cant give you any practical advise as far as getting  statement goes. Can you apeal this decision? I think in your place i would be phoning the education helpline through NAS and see if they can help you.

Have you had meetings with anyone from the secondary school, i ask this because i made arrangments personaly with support workers who i found to be more open to suggestions than the mangement level of the school. I collected my son each day from within the school and spoke to anyone i saw to make sure i was a familiar face. What i am trying to say is that a "squeeky door gets the attention" keep pushing and asking for help. I took in specialist things like laptops and writing boards and fidget toys and supplied home school diarys. Yes in an ideal world they schools should supply these things but by me doing it I almost shamed them into helping more and they gave my son permission to leave the room at will and go to the library for quiet and the learning base for support with work. I found he hardly ever uded this option but knowing that he could 'escape' the situations if he needed to helped him stay and cope with them. These are all things a school can put in place very easily and with no cost so shouldnt need a statement for them.

dont know if any of that helps you at all. But keep fighting it and i hope it all works out well for your son.

best wishes

sam

x

Well, he had the assessment, completely melted down in front of ed psych at home and clearly got upset when she was chatting about school with him :( My lad was so brave and opened up to her about not liking school, albeit it in one word answers but that was major progress for him. Anyway, most of the tests she did with him gave him average to above average apart from one which came in at below average, she picked up on his mastery and ratedness tests that he was way below average and has an incredibly low self esteem and opinion of himself. 

Anyway, the short of it is, we found out last week that he got a note in lieu not a statement. The note in lieu doesn't recognise half of the recommendations made by the professionals and I can't see that it will offer him anymore support than what the school had already put in place :( and to top it all my ex husband put a letter in to panel contradicting everything we see at home and really not backing up my lad at all :( I feel so sad that he is going to mainstream secondary school unsupported because his grades are ok, not fantastic but not massively behind. Surely, his emotional welfare should come into this somewhere too? The lady at the lea told me his "problems at home need to be met by Camhs and they are not related to his educational right to access the curriculum" it was like hitting my head against a brick wall, she couldn't see that his meltdowns at home are triggered by what goes on at school. 

Sorry for the long update, we are going to appeal but not hopeful. 

Mum25

Very best of luck.  My 9 year old daughter has just had a diagnosis from Great Ormond Street - ASD and selective mutism.  We haven't got the long report yet, but the short report very helpfully says she'd benefit from a statement of special educational needs.  But, like your son - she's high functioning, so her school attainment is 'good enough' even though not spectacular.  She's on a par with her brother cognitively, but lagging behind his (same-age) achievement by at least a level, but more or less where she should be for her age.  I just hope that a medical report saying a statement will be helpful will assist us in our fight for a statement. We too have the school on our side - she's so selectively mute with her teachers that she only talks to them to answer the register - and just tunes out or doesn't understand half of what's going on around her.  I don't know how she's managed to make the progress she has, frankly - having said that, she seems to have plateaud in the last year and I can't see how she can progress at a decent pace without a lot more help. 

In terms of the statement - look at the case law on the IPSEA website - there are cases that support a wide view of what education should be about - arguably more than curriculum progress and should encompass your child's ability to cope in society - I've heard you can get statements just to address social issues - educational attainment is only one aspect - so that might be something to major on.  IPSEA do have a helpful helpline that might be able to advise you too.

Keeping everything crossed for you..and I need your luck..I am having the same issues over a new teacher and new school routine next term.

I managed to wrangle a few concessions by sheer persistence and can't wait for the holidays.

Very little is being done and it's I feel I am constantly repeating myself till I feel delusional 

You are doing the right thing and I wish you all the very best..keep us posted.

x

Just thought I'd update, we're awaiting the decision on whether to assess my son or not. The la have until the 28th July to respond. School, his consultant, ADHD/asd specialist and Carer support officer have all written evidence as well, so fingers crossed. 

In the meantime, his last few weeks at school have been hell, he's fallen out with his peers again, got totally paranoid, low self esteem and threatening self injurious behaviour again, and according to his senco "he has no problems communicating at school at all" it's only taken him a year to talk to the mentor they put in place for him and hey ho the academic year is now up and he's panicking about the new teacher and mentor!!

Good luck to you too Oatcakes

Mum25

Hi I have nothing to add to the advice but want ed to say I am just starting the route for my son..I have a camhs (may have transposed the letters) next month and I am meeting my sons teacher on Friday (grimaces anxiously).

I totally relate to what you are saying we are having the exact same issues..achieving well academically but melting down on way home and getting into terrible scrapes at school with his peers. He shouts all the time at school because of the noise and goes right up to the other childrens faces when talking..many a time I have seen a bewildered child push my son away, mostly he is trying to be friendly but lacks the skills to do it appropriately..often I hear 'I did it cause they told me to..throw things, wrestle, etc etc' also he complains bitterly and constantly about 'noise'.

The teacher is rightly concerned that this is isolating him so I am voicing my fears that he has ASD this week before the new school year. I am worried it's premature as before assessments are in place etc but maybe it will be a eureka moment for the school as to why he still isn't settling.

Can you please keep posting to let me know how you are all progressing so I can learn from your experiences etc?

Best wishes and well done for making things happen.

X

Hi, I would make a detailed list of all the problems you experience, be honest and explain why he needs the statement. If you don't get it go for an appeal and speak to IPSEA, they can give you legal advice

Hello Mum25

Sorry to hear your son is struggling to cope, but having the school's backing is a great start.
Here is some information about getting extra support in school from the NAS webste:
http://www.autism.org.uk/living-with-autism/education/primary-and-secondary-school/extra-help-for-your-child-in-school.aspx
The education advocacy tips section looks particularly useful. If you'd like some extra help or information you can contact the Education Rights Service - you can get the detaills by following the link above.
It would also be useful if anyone else here can tell us the sorts of issues they raised and how they did it.
Good luck - I hope you have some success.

Sandra