2007 challenge: get a diagnosis for my DD1

[AnnieH]

I am convinced my DD has some kind of high functioning autism such as Asperger's Syndrome mixed in with a bit of ADHD for good measure. I'm not a doctor and I'm not asking for medical advice/diagnoses on this board, I just want to know of other people's dealings with health professionals in this area.

Did you pay to go private or NHS?

I am currently being supported by my HV and DD's teacher although the school are really stretched to provide any special needs care for her. Even children who have statements rarely get to see an EP so my DD basically has no chance.

I have made an appointment with my GP for next week, and my HV said she will have a chat with him beforehand to explain things. DD's teacher said she will write a letter to him too, that I can take with me.

Do you think this will be enough to at least get a refferral to the community paediatrician? What did you do?

[Zziggi]

I spoke to my Health Visitor about my concerns about DS. I made sure i had examples of the behaviours i was talking about so that when i said "DS often does "X" " I was able to follow this up with "For example, last friday we were doing "A" and then he did "X" ". I felt this gave the Health Visitor concrete examples of what i was talking about and didn't just seem like a mum who had unfounded worries. I stated I felt he needed to be referred on.

The Health Visitor said it sounded to her like he needed to be seen by a community paediatrician and wrote a letter to the community paed (after just running it by the GP to check that was OK, which it was). DS saw community paed who said i was definitely right and she agreed with my suspicions about DS. the community paed checked there was no other (medical) reason for DS's behaviour, no genetic or environmental reason. Then gave a provisional diagnosis and referred him on to another community paed (as the doc was retiring later that month) to keep an eye on him. Also gave me a letter to give to the school if any extra help was need so the school could access funding.

The worst bit is the LONG waiting lists. We were lucky and saw the first community paed very quickly (6 weeks) but that was purely due to the fact she was retiring soon and had a very light diary due to most cases already having been passed on. The 2nd paed is referring DS on and this has (so far) taken 10 months and we are still no where near the top of the list.....

[Savvy_Sue]

You don't say how old your DD is, although as you mention your HV I guess quite young still. But at school, so not that young.

DS1 was provisionally diagnosed with AS through the school doctor, aged 12, and we've got by with that pretty well. That first doctor said that for the diagnosis to be formalised, we'd need to see Community Psychiatrist or someone like that, and as we were about to move it wasn't worth making a referral there.

After we'd moved, we saw the doctor at the new school, and she asked if we wanted to pursue a referral. As DS didn't seem to need any help or support at school, we mutually agreed to leave it and see how he got on. He's always been quite comfortable being different, but for some people it becomes quite distressing when they want to fit in and can't.

We did have a panic pre-GCSE because he just couldn't seem to answer some exam questions - the stupid ones! - had to go and see our GP who referred us back to the school doctor and he got the extra time he needed.

You might find IPSEA (http://www.ipsea.org.uk) useful - I don't think a child HAS to have a diagnosis to have special needs recognised and met. If the special needs are recognised then the LA is supposed to meet them. Obviously if they can get by without formally recognising them then they don't have to meet them.

I think a formal and full diagnosis is possibly most useful when a child clearly can't function in a mainstream school without a lot of support. This is a very personal opinion: for DS1 I always knew there was something different about it, but it was never bad enough to march down to the GP and refuse to leave until he told me what it was. But I wonder how long the schools had flagged him as 'different': was it just the secondary school that he'd been at for a year? Somehow I doubt it. Odd comments made to me when he was at nursery make me think they had their suspicions even then.

However, the fact that DS1 could function in the 'normal' world and I didn't know what was different means I didn't make any excuses or allowances for him. If I'd had that label earlier, I think he'd have got away with not doing things he found difficult. And I'm not sure that would have been a good thing. As it was, if I insisted he did something, he would do it: it became a rule for him, and rules are good.

I don't know if that helps at all?

[AnnieH]

Thank you Zziggi and savvy_sue. My DD is 8 but I also have a 6 yr old and a toddler, whic means i still see my HV and she's the one I turned to as I didn't know where to start (and she knows me quite well too). She has in her ecords all the times I've asked for help for my DD from when she was 2:eek: She used to go to a family centre 3 mornings a week before she started nursery and when her sister was born as I really couldn't handle her very well at that time.

There has always been something about her, from as soon as she could move about she was very very hyper. But she was my first so I didn't have anythig to compare her too, just that I used to dread taking her anywhere even as a 1yo. It's when my DD2 was born when things really started to hit me. She was 23 months old, and I literally couldn't pick her up as a newborn wothout DD1 wrecking everything in sight (I mean EVERYTHNG). I'm surprised DD2 lived tbh.

He's always been quite comfortable being different, but for some people it becomes quite distressing when they want to fit in and can't. DD1 wants to fit in very much, but finds it very difficult. She gets very distressed when people don't want to play with her, and it's very difficult to get through to her why.

He rteacher has said that a diagnosis won't make any difference to how she's treated in school, as they already are very clued up with her and have many strategies in place for her. A diagnosis would be easier for me in a social point of view s I can say "It's because of this" and with her father, who refuses to believe that there's anything wrong with her (at least to my face) and her step-mum slags her off all the time (Not to me) saying that she breaks everything she touches (which, to be fair, she does) and she's is always hurting HER kids when they are at their dad's. I hate of people thinking of her as a horrid child or a bit of a nightmare, It would be easier if I could say why she is like it.

Does that make sene?

[Savvy_Sue]

DD1 wants to fit in very much, but finds it very difficult. She gets very distressed when people don't want to play with her, and it's very difficult to get through to her why.

He rteacher has said that a diagnosis won't make any difference to how she's treated in school, as they already are very clued up with her and have many strategies in place for her. A diagnosis would be easier for me in a social point of view s I can say "It's because of this" and with her father, who refuses to believe that there's anything wrong with her (at least to my face) and her step-mum slags her off all the time (Not to me) saying that she breaks everything she touches (which, to be fair, she does) and she's is always hurting HER kids when they are at their dad's. I hate of people thinking of her as a horrid child or a bit of a nightmare, It would be easier if I could say why she is like it.

Does that make sene?That makes perfect sense, and in your position I'd be pushing for a diagnosis as well! I have a friend whose oldest child is autistic, and her ex doesn't seem to accept it either. Tries describing the child as 'shy' because phone conversations just don't happen, for example.

Even though school are saying it wouldn't make any difference I think I might still talk to IPSEA. You may need all the help you can get to move forward, and they might have things to suggest that we or your HV / GP wouldn't think of. Because we haven't gone down the formal referral route I don't know what would be involved! Good luck!

[Nicki]

I don't really understand why you think your child has "no chance" of seeing an EP. If you request an assessment for a statement they have a statutory obligation to carry this out, within a set time limit, and the time limit is shorter if you as a parent request it, than if the school does. I would phone the EP team and ask for advice, and failing that check one of the excellent forums around for parents of SN children - try www.asd-forum.org.uk - which specialises in autism and aspergers and has an excellent education section.

My DD is autistic, but not high functioning or aspergers like your son. We took her to private paed aged about 18 months, who said she just had a speech delay, then she was seen by NHS Child development Team (could be CAMHs though depending on how your LHA) divides up the work, who observed her for two half days and diagnosed. The process takes longer though the less severe the impairment is.

So, first step ask for an assessment for a statement. At same time ask your GP to refer you for a medical assessment by the appropriate team. Good luck!

Edited by Nicki to amend the link

[Savvy_Sue]

I don't really understand why you think your child has "no chance" of seeing an EP. If you request an assessment for a statement they have a statutory obligation to carry this out, within a set time limit, and the time limit is shorter if you as a parent request it, than if the school does. You see I thought that too, although it might not always be an EP that you get to see, depending on what the problem is. But if there is, or seems to be, a special need, an assessment HAS to be made to see how severe it is and what's to be done.

[julesangles]

for me it was the speach therapy team that did the autisim/asb ergers review.
i reffered my son myself. booked the apointment for as soon as possible (which was 4 months then) i belive its more like 5-6 now.
now if you ask me what it was called i am going to be up all night trying to remeber. you can refer your child to anyone with or without seeing your doctor first.
i have been self referals on everyone.

[AnnieH]

It's not that she has "no chance" of seeing an EP - maybe it came out wrong -it's just that the way the teacher put it, EP's are few and far between round here, and although she may get to see one, it won't be for a long time, and it won't make any difference to how she's treated in school. A diagnosis would be of more benefit to her family and social situations as she would get the same amount of help in school whether she saw one or not. She was not saying that I shouldn't push for it though.

Thanks for the link Nicki - I have registered with the site (although it is .org.uk not .co.uk) it looks very interesting and some of the problems are very familiar to me LOL.

[Savvy_Sue]

It's not that she has "no chance" of seeing an EP - maybe it came out wrong -it's just that the way the teacher put it, EP's are few and far between round here, and although she may get to see one, it won't be for a long time, and it won't make any difference to how she's treated in school. A diagnosis would be of more benefit to her family and social situations as she would get the same amount of help in school whether she saw one or not. She was not saying that I shouldn't push for it though.I'm a bit surprised by that, TBH, does your daughter have a Statement of Educational Needs yet? If she does, then what the teacher says is true, it shouldn't make any difference to the help she gets in school, and whatever extra help is assessed as necessary should be paid for by the LEA. You have to watch it a bit though: they try to assess needs as being as easily met as possible so that it won't cost them too much, that's where IPSEA are fab!

If she doesn't yet have a Statement then the school are not getting additional help for her needs. They may have a hidden agenda of not wanting too many children with Statements on their books, and they may be doing an excellent job despite this. But in the longer term that's not necessarily in their or your daughter's best interests.

The good thing is that the school recognise that there's a problem, and are working with your daughter to overcome this, and will presumably support any referrals / enquiries that are made.

Keep us posted!

[Prudent]

Keep pushing. Special needs resources are limited and pushy parents do tend to get what they want eventually. I know you live in England so I am not sure what the responsiblity of the EA is in this situation. In Scotland, parents can request assessment and that must be carried out within six months. there is also a good appeal system. I spent three years prior to the legisation telling the school my daughter had dyslexia, poor auditory memory, organisation difficulties etc. I am a special needs teacher and did know what her difficulties were. They refused to acknowledge this. At one meeting I was told this was due to me splitting up with her father and was psychological. The minute the legistation came in, I wrote requesting assessment and the results that came back supported everything I had said. I am glad I kept pushing as they are now (starting) to meet her needs.

Good luck. Pm me if I can help.

[Sister]

Hi Annie,

My DS has AS and was finally diagnosed when he was nearly 15 despite concerns first being raised when he was 3.

I completely sympathise with your desire to have a diagnosis - to me it was a huge relief and I felt justified to stand up and fight for him in many situations in which I would previously have been apologising! It has also helped him to understand why he feels so out of step with everyone around him.

I find your DD's schools comments a little strange TBH. Surely an accurate diagnosis would throw further light on her particular issues and help everyone concerned with her to meet her needs more appropriately?

In your situation I would be insisting on a referral. In our case we were referred to CAMHS and my son was assessed by a psychologist, an ed psych and a speech therapist.

My main advice would be to read up as much as possible around the areas you think are an issue. We saw CAMHS 3 times over the years and it was only when I went back with a 3 page dossier of specifics about DS's behaviour that I finally felt we were taken seriously.

Good luck,
Helen.

[Nicki]

I think your teacher is wrong about how much extra help your child will get if she gets a diagnosis, and I say this as SEN governor of a mainstream school in England! If your child gets a statement, specifying particular provision - eg a certain number of hours 1:1 support, speech therapy, or other interventions, then the school will have a legal duty to provide this, which you can enforce, through the courts if necessary if they do not. The statement will put your daughter in a band, and depending on what band this is, the school will get an amount of money to fund this provision. The money isn't ringfenced, so you can't require the school to account for the money spent, or make them spend all of the money on your child, but if they don't provide the support they are required to in Part 3 of the statement, you can act.

Also a diagnosis is often a passport to other kinds of support, educational, practical and financial, depending on the needs of your child, so it is worth pursuing. If your child were to qualify for DLA for example, then you could put this money towards buying in extra tuition for her privately if she needs it, or other therapies. We part funded occupational therapy for our DD for a few years from these funds until we were able to get it put on her statement.

[AnnieH]

Thanks guys. My HV did tell me that of school are reluctant to do anything that I could contact the parent partnership who will fight my corner for me. I might contact them and see what they say about it. I certainly didn't feel fobbed off by the teacher, but maybe it's worth double checking if I have been or not:)

[Savvy_Sue]

It has also helped him to understand why he feels so out of step with everyone around him.I think that's very important as they grow older, isn't it? I know when DS1 was first diagnosed, a friend asked what Asperger's was, and then said "Oh, I'm one of them then." And I had to agree he was! His view was that as a teenager, he was very unhappy for a while when he TRIED to fit in and be like everyone else. Once he realised that he COULDN'T be like everyone else and stopped trying, he was much happier.

I count us very fortunate that DS1 has always been very happy to be a non-conformist. If he wasn't happy with that, there are strategies which can be used.

BTW, what others have said strengthens my niggling doubt about the school's motives. Some parents look at the stats on a school and think that if too many pupils are statemented, then their own child may be at a disadvantage. I think some parents assume that statementing is ONLY used for poor behaviour, which is obviously tosh. But schools are aware of this so 'worry' about having too many statemented children.

I look at the stats on a school, and think that if lots of children are statemented, the school is doing its best to meet the needs of every individual child. You can never know WHY a large number of children at a particular school are statemented: their needs may be physical, mental, behavioural or a combination of all three.

There are arguments against 'labelling' children too young, and a school may be doing well by a child without statementing, but now's a good time to get things moving: you've got a couple of years before the all-important transfer to secondary school, when a statement could make a huge difference!

[cookie54]

All i can say is that you need to be prepeared to fight for any thing. our son is statement for 10 hours under the old way but we keep getting told that under the new way unless they need 15 hours w week or more 1.1 care than its up to the school to sort out. The only way we got our son help was to have the lea refuse to refer him and appeal with a private E P and then we won but we are still fighting for the rest of it and have waited FOR 18 MONTHS for CAMH SO GOOD LUCK AND JUST KEEP pushing

[Ellie2758]

As others have said, you will have to fight for each and every bit of help you and DD need. Dont be fobbed off by any health professional who is not experienced in the autism field. We originally saw a paediatrician when my DD was 3, he dismissed all ideas of autism. She was later diagnosed by a specialist team and then referred to CAHMS. However, CAHMS are very over-stretched in our area. She is now with adult "services" - what a joke!

It will make a huge difference to get a diagnosis - not least for you and for her. For a start, all those people who have been treating you as if you are a cr** parent will have to go take a running jump. As will those who think she is just a badly behaved child. It should mean extra help at school and from NHS services such as speech therapy (oh, ha ha - let's not kid ourselves as this is very under-resourced), physiotherapy, occupational therapy etc. It should also mean that, depending upon how much help you have to give DD with aspects of daily living, she may qualify for DLA and you may qualify for Carers' Allowance.

I cant think of a single reason NOT to get a diagnosis. It is most important for the future that you do.

Best of luck!

[DebtphobicDeirdre]

My son has severe dyspraxia which can border on high functioning autism and ADHD. My route to help began with a speech therapist when he failed the developmental assessment at two years old who immediately noticed that he had more than simple speech delay.

[AnnieH]

Thank you all for your replies. It so reassuring to know I'm not the only one out there :)

I have received a letter from DD's teacher - and it is fab. It outlines her problems, although her teacher did say it's not extensive. Hopefully, with that and the HV's input, I should be able to at least get listened to on Monday.
I'll keep you all posted. Keep your fingers crossed for me:)

[AnnieH]

Hello, I had my appt this am, with the dr about my DD. I took in a letter from her teacher, and wrote a few things down myself of what she does, and i think the HV had seen him beforehand as well.
He took one look at the letters I took in, and said"Well it looks like Asperger's to me - I'll refer her to the community paediatrician". So I feel like a huge weight has been lifted off my shoulders. I've waited so long for someone to tell me I am not mad - I haven't got Munchausens LOL and there is something abut my daughter tha makes her different. Nobody has ever said before that they think I am right, or wrong,just that DD has problems,or that she is just her. so this is a huge relief to me

Thanks for all the support

Oh and her teacher said that she has arranged have some EP time to talk about Heidi in May! :D

[Savvy_Sue]

Great news Annie! I know with DS1 that he was never 'odd' enough for me to march down to GP and refuse to move until he told me what was 'wrong', but it was still a HUGE relief when the school doc guided me to ask her if it might be Asperger's, and she said yes ...

Now, your next challenge, get some specific appropriate help for dealing with the diagnosis ... :rotfl: Good luck!

[AnnieH]

By the way, someone recommended this little quiz to judge how "aspie" my daughter is. Apparently a so-called "normal" person would score in the region of 16 whereas someone with ASD would be more likel;y to score 32 or more. Well I tried it out and scored dead on 16! I sat with my daughter and we did it together for her. She scored 41 :eek:

Try it out:)
http://www.wired.com/wired/archive/9.12/aqtest.html

[Sister]

Well done Annie,
I can really empathise with your sense of vindication - it means so much when others acknowledge what you've known all along.
Hope you don't have to wait too long to see the paed.

[AnnieH]

Thanks all for yur lovely replies. I do feel vindicated - not least as it will be a big 2-fingers up at certain people who have not supported me (namely my own mother) and have said that there is nothing wrong with my daughter that a stable, loving home could not cure:eek: I clearly do not love my children, and moving them away from the roughest council estate in Nottingham to Hampshire was obviously not in their best interest eh?

[gushoneybun]

First time I've been on this forum.

Just read your msg on your daughter. I'm in the same situation with my son. He's 9 and has always been 'different'. Also eldest of 3.

My sons teacher has given me a list of obsevations she has made on him and had a lady observe him in class. The teacher recomended I see our GP, GP said it sounded like aspergers, and refered us to a developmental peadiatrician.

I know I shouldn't but googling it I wonder if its more ADD as he does have an imagination, and has no sensory issues except hates his head being touched (making hair cuts fun!)

My sons main problems are concentration (in a world of his own) Gets obsessed about whatever the lastest thing to interest him is, finds social situations hard, finds change hard, is totally unco-ordinated physically. But is very bright. Level 3's in yr 2 sats, and does very well in tests (which is amazing considering he doesn't pay attention in class, or get his work done)

Anyway I know the relief you feel, I'm just interested now to see what the pead says.

Nervous as to what to tell my son. (ie why we are seeing a pead - I've not told him anything so far) Also feel a bit guiilty about not going sooner to ask for help.

Sorry for the ramble - out of interest would you mind telling me what did your daughters teacher write about your daughter? (pm me if your rather)

Gus x

[Savvy_Sue]

Nervous as to what to tell my son. (ie why we are seeing a pead - I've not told him anything so far) Also feel a bit guiilty about not going sooner to ask for help.Just quickly, I sort of took my cue from the luvverly school doctor we saw, who'd talked to me and DS1 together about how he found certaint things difficult, didn't always know what other people meant etc.

So you might start with things where you think he might realise he's a bit different already, but be prepared with examples that he'll understand. And then maybe say that you're going to see a special doctor who can hopefully help both of you understand how he sees the world, which is a bit different from most other people, and help him learn how to deal with that.

Once you've got a better idea of a diagnosis (although as it's a spectrum your son may still be placed on it even if he doesn't display all the 'classic' signs) then there are books which help talk about it with your son. For example there's a lovely book called The Blue Bottle Mystery (http://www.amazon.co.uk/Blue-Bottle-Mystery-Asperger-Adventure/dp/1853029785/sr=1-1/qid=1169814067/ref=sr_1_1/203-6648436-7566313?ie=UTF8&s=books), which describes a young boy with AS. The author's written another one which I haven't read. For adolescents (and perhaps to warn you of what's to come! there's Freaks, Geeks and Asperger Syndrome (http://www.amazon.co.uk/Freaks-Geeks-Asperger-Syndrome-Adolescence/dp/1843100983/sr=1-1/qid=1169814130/ref=sr_1_1/203-6648436-7566313?ie=UTF8&s=books). Plus several 'guides for parents', which I'd hope you'd have recommended.

I've always tried not to use 'normal' in such conversations, or to say "What's wrong with you is ..." Because IMO there is nothing wrong with the way my son sees the world, it's just not the same way I and most other people see the world. Being in a majority doesn't make you right: at least I know with the Aspies around me that if I ask a straight question I'll get a straight answer!

Fortunately DS1 doesn't mind being 'different'. That's sometimes a problem with teenagers, wanting to fit in. Mind you some of DS1's friends make him look boringly normal ... :rotfl:

[gushoneybun]

Thanks for that Sue.

I think that approach to telling my ds about the pead appointment is a good one.

I was toying with the idea of saying it was a standard check up, but thought It might get a bit detailed for that, and also there are quite a few things which said together will be hard to hear, sounding like critisisums of him, when they are not.

Will go in armed with areas of concern and appropriate examples to back it up with.

Gus x

[AnnieH]

Hi Gus,
this is the list I wrote about my DD and the things she does:

· Collecting rubbish in bedroom. I mean rubbish like empty fish finger packets, empty pop and milk bottles all stacked in a big cardboard box. Get very upset if I want to throw them away because they are her “special things”
· Destroys things. Carved up her wooden bed and took a screw out of it. Ask her why she does it and she doesn’t know.
· Throwing things out of bedroom window. Threw a knife out when someone was walking on pavement underneath, and it nearly hit her and her dog.
· No concept of other people’s belongings. Tried to give her sister’s brand new toys to the toy fair at school.
· Can’t share
· Never ever stops talking. Must finish what she is saying before you can say anything to her.
· Cannot leave a job, or activity half way through. Must finish it first.
· Very bouncy, fidgety. Can’t stand still or sit down without wriggling about or fiddling with something
· Very aggressive/violent towards little sister (6)
· Always been a very bad sleeper. Is still awake sometimes when I go to bed. Shares a bedroom with sister and often wakes her up – doesn’t seem to understand that Katie needs to sleep more than her.
· Has obsessions with certain things. Was mad on flags at one point, but that has dwindled slightly now. Her current ‘thing’ is doodle books. She can sit for ages going over the lines in biro, but she doesn’t colour them in.
· Has a fantastic long-term memory, but very poor short term memory. She has said herself that she gets very cross with herself when she goes into a room and forgets what she went in for, yet she can remember something in minute detail that happened 2 or 3 years ago.


H told me that she rushes things because she has so many ideas in her head that they all try and burst out and she can’t get all the thoughts and ideas out of her head quick enough.

Hang on and I'll try to find the teacher's letter too.
When he read to 2 things combined, he said I didn't need to convince him of anything, and I didn't really need to say anything else.

[AnnieH]

this is the letter from her teacher. I've scanned it as a picture as I'm not sure how else to do it.
Hope it works
Doh it didn't sorry

BTW I have told my DD that she hasa very special brain, and that I would like to understand her better, and help her more with the things she finds difficult

[gushoneybun]

Thanks for the pm, and replies here. :)
I've emailed you the list my sons teacher has done on him.

(Sorry for the quick reply - hectic here, have my three and an extra one tonight!)

Thanks Gus x

[Prudent]

I have just caught up with this thread. I am so glad you are making progress.

[Savvy_Sue]

Destroys things. Carved up her wooden bed and took a screw out of it. Ask her why she does it and she doesn’t know.Oh, the battles we had when DS1 would destroy his brothers' Lego models! And I would ask him WHY, and how he'd feel if someone did that to HIS Lego models, and he was just mute! Of course he didn't know why he was doing it, or how he'd feel - although I knew he'd go ballistic if his brothers so much as BREATHED near one of his models!

Is there ANY way you can give her her own room? For some reason I sensed DS1 would not be able to share, and he never has. Well apart from a short period when all 3 of them were in one room, but there was no room for any toys then! :rotfl:

Which reminds me of when we moved into this house: who would have which bedroom? DS1 got the smallest bedroom, which didn't please him, because he wanted either the master bedroom (ensuite toilet and walk in cupboard) or the largest bedroom. He tried to tell me it was even smaller than his bedroom in the old house - it's about twice the size of that one! But I had to use concrete examples: "in the old bedroom, your bed was there, and it couldn't go against any other wall, because there was no room. But here, you could have your bed against any of the walls, so they are all longer than the walls in your old bedroom, which means this room MUST be bigger than that one."

He is much better now. We've all learned to cope. I think that taking the approach that they are special and different and unusual is good: sometimes things are very hard for them, and for us, and there are some things none of us will understand, but I wouldn't be without DS1 and his foibles! :rotfl:

[AnnieH]

Hi Savvy_sue. My HV asked if we could put her in a room on her own. I don't really see how it could happen though, as we have 3 bedrooms, and 3 children for most of the year: 2 girls and a boy. The girls have the biggest room, and the boys' room is the smallest. The trouble is, that at certain times of the year, my step-children come and stay. They are an 11 year old boy (well he'll be 12 by the time he comes back in the Summer), so we can't move her into a bedroom on her own, just to change things again when they come, as this would upset her even more. It upsets her anyway, when they come and go, ANY change affects her, so that would just be more for her to cope IYSWIM.

I wish I could giver her a room on her own. It would certainly make life a little bit easier. Might not stop her going into other peoples' rooms and wrecking stuff though LOL

[sharronloves2spend]

sorry annih havent read thorough everyones replies but heres my experience
ds1 is statmented but does not have a definiate diagnosis, we personally feel that it wont change the way he is treated or learnt in school. at the request of the school or you, you can request an ep to assess your child for statory assesment they have a certain amount of time to do this , sorry this is only a quck reply will read through later and if anything else springs to mind ill post later, i found ipsea and rathbone supportive, bye for know sharron

[gushoneybun]

By the way, someone recommended this little quiz to judge how "aspie" my daughter is. Apparently a so-called "normal" person would score in the region of 16 whereas someone with ASD would be more likel;y to score 32 or more. Well I tried it out and scored dead on 16! I sat with my daughter and we did it together for her. She scored 41 :eek:

Try it out:)
http://www.wired.com/wired/archive/9.12/aqtest.html

Just did this test on my 9 yr old son, he scored 29, there were some things though that he answered one way and i thought he should have answered another way. eg. I just don't think he realizes when he is boring people, or being impolite and I don't think it has ever been pointed out to him in an obvious way.

My 7 yr old daughter did the test and scored 19.

Gus x

[gushoneybun]

ps some things surprised me, like I didn't realise he noticed sounds, that others didn't, or saw patterns in things. He realed me out a list, like the wall paper, the classroom door, the carpet at school, the settee throw, so while there are obviously patterns there, I was surprised at how quickly he answered and how many things just rolled of his tongue that had patterns.

Also the question about not liking his routines disturbed, well I know he doesn't like change, but I hadn't realised that he had noticed he didn't like change.

Sobs his heart out when he changes class at school as he doesn't like leaving the old teacher. Got very upset about his violin being changed (went from hiring one to buying him one) They are the biggies but there are smaller things too.

I hadn't really realised these were not normal reactions till recently.

[gushoneybun]

Hi Annie/ all

We saw the paediatrician today, and I thought I'd update how we got on.

She is referring my son to either camhs (child + adolescent mental health services) or an educational psychologist to have an intelligence test.

She asked how he had done as school and I answered that despite his poor concentration and never finishing work he is still top of the class at reading and numeracy. (top table for literacy still, but writes very little). He just seems to be able to do well in tests.

I wouldn't have said he was exceptional, just very able.

She said ASD/ aspergers was the 'in' diagnosis, and that it is important for a child not to be labelled with this if it is just the case that they are very intelligent, and find it hard to relate to their peers. Which I totally understand.

I'm not sure really if that is the case with my son though, he has so many things about him, not doing well with changes, poor at going to sleep, not fitting in socially, gets obsessed about pokemon (was Harry potter, before that the channel tunnel etc). He's totally un coordinated physically etc. but am happy for them to test him and go from there.

The big plus is that we can warn middle school that he may have some issues that will require extra support without having a diagnosis, and this was my big concern, so that has eased my mind. (He goes in |Sept)

Gus x

[AnnieH]

Thanks for the update. We still haven't heard anything yet:(

I had parents' evening last night and H's teacher said that she will be deeing an EP in May and she will get her to do some tests on her because she thinks that one of her problems is that she is VERY clever. She also recommended a book by Tony Attwood called The Complete Guide to Aspergers Syndrome, so I might buy that. You can read some pf it on Google Books though and it looks very interesting and very up-to-date.

[Savvy_Sue]

We also have the Attwood book, very useful.

[gushoneybun]

Glad you have the next step mapped out Annie.

It's a slow process, but after years of uncertainty, I'm just glad someone doesn't think I'm mad and is checking things out for us!

I'll look up the book in the library. :)

Gus x

[gushoneybun]

Hi
Just an update on us.

No news on my sons intelligence test from camhs yet, but the school have moved him from 'cause for concern' to 'school action.' They are going to ask their Ed Psyc to look at him too, but are already over on their hours this year :( At least this way they can do him an IEP and help him with his social issues.

I got the book reccomended above from the library on Saturday, so will get on reading that! (Had to go on a waiting list for it!)

How are things for you and your dd Annie?
Gus x

[AnnieH]

Hi Gus, No real news as yet :rolleyes: DD is due to see the EP in May and her teacher thinks that she may have a very high IQ too. The school have set up a meeting woth all the parents of children with autism/possible ASD's in that school to have a chat together and possibly turn it into a bit of a support group. Fab idea!!!

She saw the school nurse and hopefully she's busy finding out what's happened to the referral, as we've been put on a waiting list, so I'm hopeful she can do something there.

[gushoneybun]

Annie, if you are still about! How did your EP appointment go?

Hope your daughter is on the road to getting help.

Gus x

[Amarillo]

Can I recommend a good book for the social side of things ? "The Unwritten Rules of Friendship" by Natalie Madorsky Elman & Elieen Kennedy-Moore http://www.amazon.co.uk/s/ref=nb_ss_w_h_/203-4080008-5750338?url=search-alias%3Daps&field-keywords=the+unwritten+rules+of+friendship&Go.x=0&Go.y=0&Go=Go

It has helpful tips in it about things like learning about personal space (you use hula hoops !) Teaching them not to go over and ask if they can play as by asking this outright it gives the other children the chance to say no, then they aren't left with much alternative other than to walk away, so it gives strategies of other approaches to take. I have found it very helpful and writing this I think I need to read it again as have forgotten loads and time to refresh my memory.

[AnnieH]

Thanks Amarillo - I'll take a look at that.

Gus - Hi I'm still here. No appointment as yet, but here's hoping still:)
How are you doing?

[gushoneybun]

Hi
Sorry that you haven't been seen yet :(
My son had an appointment with the EP today. She did a test on him. He scored at 95% But she said if she removed writing from the results, he scored 99.9%

I am very prous. She believes his problems are all that he is clever, so finds it hard to socialize.

I'm not so sure. The school SENCO isn't either.

They are arranging a meeting with the SENCO of his next school. So I'll see where we go from there.

I hope your DD gets her EP time very soon.

Gus xx

[Ellie2758]

[quote=gushoneybun;5582806]Hi
Sorry that you haven't been seen yet :(
My son had an appointment with the EP today. She did a test on him. He scored at 95% But she said if she removed writing from the results, he scored 99.9%

I am very prous. She believes his problems are all that he is clever, so finds it hard to socialize.

I'm not so sure. The school SENCO isn't either.

They are arranging a meeting with the SENCO of his next school. So I'll see where we go from there.

I hope your DD gets her EP time very soon.



oh dear. I do wish this system of EPs "diagnosing" was seen for the con it is. They are not able to diagnose Aspergers as they are not trained to do so. You need to see a Child Psychologist or Child Psychologist. EPs are bound to say that the child is "just clever" - that will save the LEA a pretty penny or two, wont it? Sorry to sound so cynical but been there and done that over 10 years ago and I really had hoped things would have improved since then. Instead of which it seems to have got worse - the lack of statementing is a scandal.

Is there a CAHMS near you? If so ask your GP for a referral. Failing that, a child development clinic at your local hospital? Parent Partnership and IPSEA have already been mentioned.

I really hope it is just that your son's probs are his cleverness but you seem unsure and to me that is the biggest sign that something is not right.

[gushoneybun]

The Senco called me today and said that the EP had popped in and has decided ds needs a full asssessment. Hooray! They will arrange home visits and speak to dh etc.

They are also getting Autisum outreach involved. (I've never heard of them)

Gus x
(sorry to hijack your thread Annie)