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Need some quick advice re Aspergers for upset friend at unhelpful school.

(25 Posts)
Bart Fri 26-Nov-04 10:45:04

A friend of mine rang up last night very tearful. At a meeting with sons teacher she had been told they thought her child has Aspergers. He has been experiencing learning difficulties for a few years now but these have worstened this year. The school have refered him to an ed psyche who told my friend that she never finds labelling children useful. The school have told my friend his behaviour is poor and needs addressing. They say they have no funds to give him any special help and so she must deal with him. My friend is doing her best but seems to have hit rock bottom. She has asked for advice and I dont really know what to say. The child is in Y5 by the way, this makes him 9/10 I think.

Can any one advise?
Has she got rights here?
Anyone know who funds what for special needs when the ed psyche seems too trendy to diagnose?

My friend is coming over next Tuesday with all her bits of paper/notes from various meetings. It would be great if a mumsnetter could point me in the right direction before then.

pixiefish Fri 26-Nov-04 11:28:47

this is the nas website
just bumping this for you. don't know an awful lot- there are others who know more- it's part of the autism spectrum- have taught a lad with aspergers so could give you info from a teachers pov but there are people far more knowledgable than me plus those that can help with going for diagnosis. keep bumping this thread

Bart Fri 26-Nov-04 11:33:19

Thanks pixiefish, thought no one was going to answer

Bart Fri 26-Nov-04 11:34:01

Thanks pixiefish, thought no one was going to answer

pixiefish Fri 26-Nov-04 11:37:43

Bump it this afternoon and this evening- there are people with far more experience than me here who may just be busy at the moment

coppertop Fri 26-Nov-04 11:50:39

First of all I would love someone to goto the Ed.Psych and tell her that a label is in fact a very useful thing to have. It can really help parents in their fight to get what their child needs, eg DLA (Disability Living Allowance), statementing, funding etc.

Would your friend be able to see a GP to get her son referred to a Child Development Centre/Paediatrician for a proper diagnosis? The referral may take a while to come through but at least he would be in the system. Another option is to pay for a private diagnosis. Someone on here should be able to help find someone.

I'm thoroughly disgusted by the school's attitude tbh. If a child has Special Needs then they are supposed to put the child on their SN register. He should be on School Action or School Action Plus.

If you google for a group called IPSEA they have a helpline run by volunteers who are very good at giving advice in these kinds of situations.

There is also a site called www.krism.org.uk which is for people affected by AS/ASD. They have an Education section which gives lots of resources about the rights of parents and children and the duties of the school/LEA.

binkie Fri 26-Nov-04 11:53:39

OK - first thing - it is fair and in fact good for a school to say they think there's a problem. It is NOT RIGHT for them to pre-judge what the problem may be - that is a job for a properly qualified professional, and there's a question mark over whether an ed psych is really such a properly qualified person. (The ed-psych-who-won't-diagnose vs. unhelpful-school battleground is really a red herring, albeit a horrid one that has stuck your friend in the middle.)

There are some marvellously knowledgeable people here who have been through the system and really know it, but from someone who's actually in just the same position as your friend, here's what I think: your friend should get a referral through her gp to someone who is a properly qualified professional - NAS would be able to help her - I think the most reliable is usually thought to be a specialist developmental paediatrician. Then, if she gets a diagnosis, she can start the statementing process which (in principle) will provide the school with the funds to help.

Of course, that sort of leaves open the question of whether your friend wants a diagnosis, but my feeling is that it is always better to know than to worry. Actually I think the ed psych, with here "labelling isn't helpful" is the opposite of trendy - actually direly out of date. If you know what you might be dealing with, you can start to deal with it!

(Our position is that we've had an ed psych AND a paediatician say Asperger's isn't an issue but I've got a meeting with the school coming up this very afternoon when they're going to say they think it is. So I'm feeling a bit fierce.)

coppertop Fri 26-Nov-04 11:56:53

Quick hijack to say "Good luck, Binkie" for this afternoon.

fisil Fri 26-Nov-04 11:58:44

Bart, I don't know how much I can help. Your friend seems to have been given very confused and contradictory information. The school has "labelled" him, but at the same time has used a specialist who refuses to "label" him. Neither appears to be using useful language, in my opinion. It is not about whether the child has a label or not, it is about whether he has appropriate provision for his needs.

Your friend mentions learning difficulties and behavioural problems. Both of these would be consistent with aspergers. Aspergers is increasingly commonly diagnosed, which means that most teachers and nearly all schools will have dealt with it at some time before and should have some strategies and understanding. Your friend might want to ask direct questions to the school about how their special needs policy deals with students on the autistic spectrum, and what experience they have of students in the past. This might give them the prod they need about their responsibilities.

It is expensive for a school to meet the needs of a child with aspergers. But that does not mean that they have any right to neglect their statutory responsibility to provide for every student. It is worth your friend's while understanding the school's reticence to provide her son with all the support - and to work from that direction to presurise them to provide him with what he needs. In other words, she shouldn't march in with demand after demand, but instead she should do what it sounds like she's doing and gather lots of information - about aspergers, about her son, and about getting him a statement. If he gets a statement the school will get a lot of cash and support to help him, which means everyone will win. But schools are as fed up as parents about the difficulties in getting a statement. In my experience things work best when school and parents face the frustrations of getting a statement together.

As an aside, has your friend read "The Curious Incident of the Dog in the Nighttime"? I found that reading it has helped me to help a student at my school who has never been "labelled" and who has consistenty failed to get a statement. He was in the bottom maths set last year and I took the risk of moving him into the top - which really worked. I also speak to him very carefully, making sure I avoid idioms, and asking him to repeat important instructions back to me so that I know he's understood. All this was inspired by reading the book!

binkie Fri 26-Nov-04 12:00:28

Thanks honey.

I'm quite ready to go for a second opinion, should have said that - I'm completely in favour of labels if they're needed!

Bart Fri 26-Nov-04 12:46:03

Goodluck from me too binkie, thanks to you and fisil I`m off the blocks as it were.

I`ll do some reading on those sites etc and may come back with questions before I see my friend on Tuesday.

In the mean time I`m still open to other mumsnetters giving me more pointers/tips.

Jimjams Fri 26-Nov-04 13:17:21

Ed psych sounds useless! If a child fits a 'label' it is essential they receive it otherwise they are well and truly buggered. A diagnosis is only unhelpful if it is incorrectly applied.

However most definitely not up to the school to diagnose. I think the child needs to see a developmental paediatrician or clinical psychologist to work out what is going on.

binkie Fri 26-Nov-04 21:46:35

Bart, bumping for you. A particular person who'd be fantastic help is MrsForgetful - hope she'll be around soon (miss her).

Also, thank you too - meeting was much more sympathetic than I'd expected - ds had taken wind out of their sails by coincidentally being Super-Good all day, and it does seem they're prepared to be open-minded about him.

What are your friend's ds's problems, do you know, by the way?

JaysMum Sat 27-Nov-04 01:14:59

Bart
First let me start by saying what a wonderful friend you must be that you have posted this here to help your friend in this way.

The same thing happened to us as it has your friend. J our 8 year old son had shown signs of having learning difficulties and when he reached yr 2 at school his teacher approached us and asked if we had ever thought J might have Aspergers. I didnt have a clue about what she was talking about!!!
J was seen by the school EP but in the meantime the teacher recommended we made an appointment to see our GP. This we did and J was then referred to the Paed at the hospital. The Paed then referred us to the Family Consultancy team and from then on we have had the endless stream of appointments for various assessments. Unfortunately due to the lack of rescources in our area we are unable to get a DX through the NHS fo a further 3 years!!! Therefore we are now undergoing private assessments.
The school EP assessed J and in her report she listed all of J's strengths and weaknesses - we did also pay for a private assessment of J's learning difficulties - with these two reports I was then able to submit a request to the LEA for a statutory assessment for J to be statemented. J recieved his statement of educational need in October this year giving him 18 hours of 1:1 support a week. This statement has been given without no confirmed DX of J's condition - although we are fairly confident he has Aspergers with SPD language disorder. The statement is for J's educational need and not his label - so I find it difficult to believe that your friends child has not been statemented before if he has such difficuties with his learning ability. It is supposed to be about NEED not LABEL!!!!!
Your friend needs lots of support and advice and the only way she is going to get this is by finding it herself - this is so sad but unfortunately its fact.
I would suggest that she gets a copy of the book Understanding Aspergers by Tony Attwood, that she contact the National Autistic Society for advice and info and would strongly recommend that she spends a morning contacting IPSEA for help and advice with regards to schooling problems.
With regards to the school saying that the childs behaviour is poor and needs addressing - thats a bit like the pot calling the kettle black - it is the schools duty to care for her childs educational welfare and they have so obviously failed in doing this if they have allowed a child to reach yr 5 without putting into place interventions and strategies to enable the child to be included in school.
If you need any further advice, telephone numbers etc then please ask - you can CAT me - if only I had had a friend like you when I started sorting out my little mans problems!!!!

Good luck.

Bart Sat 27-Nov-04 08:10:13

How very kind Jaysmum. When I speak to my friend I`ll tell her that you are willing to be contacted. If it was my son not hers, I`d very much prefer to talk to someone like you than just read things (although I will pass on your tip re the Attwood book).

Binki, examples of his learning problems are... not "getting" comprehensions. My friend says he answeres from his point of view not the characters. Maths seems to be a problem too, Rather unhelpfully the child seems to know he is in the "bottom 4 learners" in his class. Can`t imagine what his classroom is like if that sort of label is freely attached. I`m afraid I dont really know more of the details, I`m sort of at the supporting mum end of the situation.

Thanks for all the help - begining to feel much better informed.

JaysMum Sun 28-Nov-04 21:05:39

Bumping this for you Bart.
Wheres Mrs F????????

Bart Tue 30-Nov-04 13:04:59

I have spoken to my friend. I have passed on everyones tips and said that you`re willing to chat Jaysmum. Either I`ll CAT you or she`ll join Mumsnet and CAT you herself. She`s gone home with the info you all gave me - thanks everyone.

crabapple Wed 08-Dec-04 12:21:51

Hi,Barts friend here big thanks to you all for
response and advice.Have managed to get GP referral to community paed,sent in post yesterday,now preparing for long wait in this area.In the meantime decided to get DS some help
with literacy from a very patient retired teacher
and observe the outcome.Feeling more positive now,
and have devised an action plan with lots of help and support from Bart.Thanks to Jaysmum for kind offer of contact,will CAT you,but not done this before, so hope it works!

crabapple Wed 08-Dec-04 12:33:02

Hi again
just tried to CAT jaysMum but had message that
mums net do not recognise your talkname.Unsure of what has happened,any ideas?

blossomgoodwill Wed 08-Dec-04 13:22:18

Chatname is now Jaysmumwantsasilentnight for christmas

JaysMumWantsaSilentNight Wed 08-Dec-04 20:05:34

Hi Crabapple.

Everyone here appeared to be adding a christmas theme to their names ....didnt want to be left out!!!!!

and it is the first thing on my christmas wish list....OH FOR A NIGHTS SLEEP!!!!!!!!

I will cat you my details......

JaysMumWantsaSilentNight Wed 08-Dec-04 20:15:03

crabapple,
tried to cat you - you need to enable this is you want to recieve messages.......

JaysMumWantsaSilentNight Fri 10-Dec-04 00:39:06

Crabapple....just to let you know I will be away for a few days....back next Tuesday....

crabapple Thu 30-Dec-04 23:27:48

JaysMumWantsaSilentNight....so sorry for long absence, dh managed to turn our computer to mashed potatoe with a mangled disc!back now, almost in good health! Sorry to be ignorant, but how do I enable a CAT? By the way already had appointment
from comm paed for 17th Jan, was pleased about that but heard that the following stage can be long winded, so not getting too excited.Also had a metting with teacher who was very helpful,has added learning to ed plan,3 15 mins sessions a week for maths,one 15 min role play session plus other help during whole class activities.Admitted that school have not addressed ds's learning needs
adequatly and that she instigated EP and GP as a tool to get him more help!She was very understanding and seemed genuinly supportive,she is going to write me a report of all concerns she has about ds's educational/social needs,to take to the pead appointment.Would welcome any tips from mumsnet users to take with me to appointment.
binkie, Big thanyou .....found NAS very helpful,wil explore Krism and IPSEA webs asap!
Happy New Year to you all!

JaysMumWantsaSilentNight Fri 31-Dec-04 00:53:45

Crabapple.....cor that was quick for the Comm.Pead appt.....I had to wait years!!!!!!
To enable the CAT you need to change it in your member profile to say you accept messages from other users....well I think thats how you do it...it is late and I'm suffering from sleep deprivation.....my little ray of sunshine is refusing to go to bed!!!!!

Good for you that you have teacher on your side....shame though that they have not dealt with his needs before now.....but hey ho ...onwards and upwards.

CAT me when you can....always lurking around!!!!

Wishing you a Happy New Year

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