Been thinking a lot about Asd as an umbrella diagnosis.

[Ineedmorepatience]

Ok, this might make sense to some of you! Dd3 has a dx of Asd which is absolutely fine and she definitely fits the profile. I knew from a very early age that she had Asd.

However it has begun to dawn on me that she might actually be better supported if she had many different dx's. One or two teachers have made comments recently about her slow processing speed, her inability to do symetry, her poor concentration, dodgy co ordination, lack of confidence.

I find myself saying over and over that all these things are part of the Asd but people just dont seem to get it.

I am worried because she is in a great primary with a passport and fantastic senco, so I am thinking if she is having all these problems there what on earth is going to happen at secondary when she is moving between staff all the time and the staff really wont know her at all.

So should I be stamping my feet louder and getting her more specific dx's or should it be the staffs responsibility to find out what it actually means to have a dx of Asd?

Hi, not sure I have the answer to your questions specifically but I am going through something pretty similar with my DS1. He was dx with ASD last Nov and currently awaiting an apt with OT for assessment for Dyspraxia. I have always waited for school to take the lead and look a bit further into his difficulties but they never have. (With the exception of removing him from assemblies and on occasion PE lessons because he can't cope with them)

I completely agree with you that people just don't seem to get it and it has shocked me beyond belief that schools lack so much education about ASD. Our school tend to look at my son's outbursts as isolated incidents rather than looking at all the factors which add to his anxieties and how they are all related to him having ASD.

My DS is now in year 2 and struggling emotionally and socially, withdrawing himself gradually from any social activity and all things which require any physical exertion. School are totally blinkered about his needs and as he 'copes' mostly they fail to see the bigger picture.

It is exhausting trying to stay one step ahead all of the time and feel like I am constantly briefing school/reminding them of his needs.

The referral for Dyspraxia for my ds has only recently been made and I do wish I had pushed for this sooner.

I am currently seeking statutory assessment for him without school's backing so I am not feeling too optimistic.

I think a lot depends on the school your little one attends and what experience her teacher/Senco have (not too mention how controlling the HT is.... )

Sorry if I've waffled on a bit. I hope by sharing my experiences it has helped a little. :) X

The staff should be made aware if she has already been diagnosed. I assume she has an IEP?

I'd suggest have a meeting with the SENCo and say that you are a bit concerned and please could she ensure that all the staff are told exactly what ASD will entail and how best to support your DD. (This is easily done at a staff meeting, or by checking they have all read the IEP.) You could also talk to the SENCo about your concerns regarding secondary school, and request an Educational Psychologist assessment if your DD hasn't already had one. The wait is about 18 months in a state school, and can be included in records going up to secondary.

Sadly I should add that I have heard of some people having real problems with SEN at secondary, and I think you're very very wise to be thinking of it already. If at all possible, find her a secondary with a reputation for being supportive of SEN children. Then when she starts, again meet with the SENCo and double check they will be informing the staff of your DD's needs. It sounds like you are very supportive and aware though so I'm sure you'll be able to get her the help she needs

PS and yes, support and awareness does vary enormously from school to school. It shouldn't, but sadly it does.

Hi teacher I know what you are saying but what I mean is that even though the staff are well trained they still dont see how all the different aspects of the Asd fit together.
Sadly in my location, without a statement we have no choice for secondary but luckily our local one does have a really good sen team. Its the management team that are the issue with regard to sen.

simone you have hit the nail in the head about having to try to stay ahead of the game and try to explain each possible difficulty that she may have. I heard a PE coach from outside the school having a dig at her a couple of weeks ago because she doesnt know her left from right .

Well no she doesnt but she was enjoying the session and it was hardly world cup standard, I had written on the form that she has coordination difficulties

Last week at parents eve her literacy and numeracy teacher flagged a concern about the way she processes verbal instructions. Aaarrrggghhhh, its sending me loopy

They're already trained?! Aaarrrrghhh seconded! No wonder you're getting frustrated!

Then yes, maybe a more specific diagnosis is needed to spell it all out... Has she had a full Ed Psych assessment yet? Were you happy with it if so - I mean was it detailed?

No teacher very little chance of getting one either, tbh.

She was dx'ed by a psychiatrist at CAMHS and has never been seen by an ed psych. She is in yr 5 and working above average academically so no reason for an ed psych assessment to be requested by school and even if they did it would be unlikely that she would be seen.

She has big gaps in her learning but gets by by being very good at what she can do eg. She is scoring at lev 4a at reading and yet she misses out any comprehension questions that include any kind of inference or understanding other peoples feelings. This is fine now but her strategy is unlikely to work upto GCSE's.
She was taught very well in a different school how to find an answer in the text and this method has worked well for her.

She requires all her instructions to be given individually when starting a new topic in maths and has a very shakey understanding of place value due to her forgetting which way she needs to read the numbers and regularly still reversing her digits. So 12 becomes 21 etc. Her maths is correct but if she has reversed the digit then the answer is wrong.

And then of course is her fear of getting things wrong and the anxiety that this leads to.

She is very difficult to get to know properly and she never asks for help in the classroom although I am planning that that will be tackled when we review her IEP.

Most of her targets are currently around social communication.

I dont know, maybe I am missing something

Oh goodness yes, that's tricky. Then I'd suggest first step would definitely be to discuss your concerns at the IEP meeting as you've already said. The SENCo might be able to help, especially if you explain your frustration re staff not knowing which bits tie into ASD despite training.

If she is stumped though, then you have two main other places you could try:

1. A private Ed Psych assessment, cost about £500. I've read some great (very helpful as a teacher) ones, but also heard other people say theirs was useless! If you go down this route get a recommendation if at all possible.

2. A support network (advantage being they're free too!) Mumsnet have a whole list on here - you could try a general PPS support through www.parentpartnership.org.uk/about-us where you can get a personal case worker assigned to help, or you could speak to a more specific charity like www.autism.org.uk/ who might be able to offer more detailed and targeted help than a generalist, both to you and the school? Would be good to have some support in place going forwards for secondary too, since as you say it could get more tricky for her to compensate later on, and the management team sound like they will need to be given some advice.

Sorry if you've already tried all of the above!

ineedmorepatience - I seem to remember back in approx 2005 ish that there were other dxs that used to fall under the umbrella term of ASDs.
I say that as that was roughly when DS1 was dx with dyspraxia and the paediatrician said it was part of the broad umbrella of ASD.
But I suppose really that Dyspraxia falls under part of the Sensory Processing umbrella as well.
It is all ever changing.
Re ASD training in some schools - it is very general - and that is from NAS. They run lots of varying length courses for various teaching staff. So it very much depends on what level of training the staff have actually had.
When I had some basic training, I had so many questions but I kept being told that that was part of a much longer course (more expensive!) and could be covered there.
If school ever say that the staff have had relevant training, check what it is, then check with NAS as to what level of experience that it might give them.

Thanks teacher I will talk to the SENCO and see if she thinks it would be worth us looking at a full ed psych assessment to look at exactly where her gaps are. We are not really in a postion to pay for it but if it would help then it might be worth thinking about.

auntevil of course you are right about the training, I will be asking some questions when I go in.
Why do we have to be these nagging parents?

Very best of luck Ineedmorepatience. It is so sad that you do have to go to these lengths - here's hoping the changes coming in will make things better for all!

polter sorry just read your post,
I know what you mean about not knowing what or why is missing.

Dd3 has had an OT assessment which picked up issues with her motor skills, visual perception, hypermobility and sensory issues. But they didnt tell me how these things might effect her learning. They wrote the report and then discharged her.
Similar with SALT although she has recently had some SALT involvement which was really good for her.

I just feel that it is too much to expect the SENCO at school to deal with all her issues but CAMHS handed everything over to her after diagnosis.

I dont really know how to access any other support

Might this be of some use in terms of tracking someone who could help? www.autism.org.uk/living-with-autism/education-and-transition/primary-and-secondary-school.aspx

Or there are support groups listed here too by local area: www.specialneedsuk.org/support.asp

I really feel for you and agree you should certainly have support. I am crossing my fingers it won't take long to find it! (The SENCo might also be able to suggest other support avenues from the LEA.)

Thanks teacher I will have a look at those links tomorrow