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 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

AnnieH wrote:

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 https://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

Nicki wrote:

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

AnnieH wrote:

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.