Best wishes for tomorrow DEBS

[claw3]

Hope all goes well.

What time is dx meeting?

and dont forget to keep us posted

Hi Debs,

re your comment:-

"Sorting a meeting with school with head and teachers from this year/next to look at provision and what can be done out of their budget"

Just to pre-warn you Debs that it is unlikely that anything much will come out of that meeting.

Would urge you to start applying for the Statement asap and if the LEA refuse to assess after you appeal their crass decision then its SENDIST.

debs You've probably got the balance right then for your ds. The co-morbid do demonstrate the complexity, and the aspergers to ensure people have higher expectations.

My PCT don't diagnose SPD . They don't even test for it.

You 'should' have less of a problem with refusal to assess I would have thought, but there is a recession on and what they can push to next year's budget is a redundancy they don't have to give this year etc etc so you never know.

Just and Star Thanks. I will defo ask about this. Don't you hate going back and forth with questions - just when you thought you'd sorted that bit.

I know two people locally whose children have AS and they have not found the dx (as distinuguished from ASD) a problem but I am seeing one of them tomorrow so I will ask her too.

Atila - yes I agree with you entirely and I will submit the Stat Ass application as soon as I have the amended report irrespective of what school say. My thinking is that I have a duty to try and get school onside at least.

It's true debs sorry, that now agencies can set their own criteria (which is why here OT can 'legally' refuse to accept referals from children with ASD ) that a lot of them are throwing aspergers out of their criteria to bring down waiting lists and save money.

Sorry, I know how hard it has been for you to get here and get a halfway reasonable fit of a dx, but I guess this is why sometimes it is better to chase the dx that helps rather than the one that is accurate.

Perhaps don't think too much about this now, Your head must be about to explode. Like I said, there are advantages of aspergers in that schools don't lower their expectations as far as with a dx of asd, but nor do they feel they should be required to fund support.

But how do I get that information? Say the clinician says 'he meets the criteria for AS so that is what we diagnose'. It is an ASD after all.

If they throw ASD out, than that would include AS and ASD? If services extend to ASD, then they can't exclude AS because it is an ASD. I don't understand

No sorry, I was clouding the issue. My LA is particularly bad, setting their criteria cut of at ASD, but most haven't got there and set their criteria at AS. DLA is harder to get too.

Stupidly, DS is 'probably' aspergers but was too little so they gave him an asd 'for now', but when I asked when the next appointment was I was told there wasn't one.

You can tell the clinician that given AS is an ASD, and that AS is likely to disappear, you don't want ds without an out of date or unrecognised dx, so can she just reduce it to ASD and put 'very capable' lots of times in her report instead. That is one way. You can perhaps discuss it with her rather than demand, she might have some ideas of her own.

As I'm sure you realise the science isn't exact anyway.

But, don't get stressed about it, probably as coupled with spd will get you through most things. It is AS alone that might give you harder battles.

The situation here is that AS does not stop us accessing OT,SALT etc. What else may I not be able to get access to?

I will ask but I'm not 100% sure that the clinician will know what I'm talking about.

I don't doubt you guys as I know you're really knowledgeable but I don't see how criteria which include ASD can exclude AS. And I'm not sure whose criteria I have to be worried about??

no, you're right debs. It's more for 'insurance' against the future that I'd personally go for asd rather than as, as you might get OT now, but it is looking like criteria are going to be revised and narrowed over the next few years, the evidence of this being that some LA's have done it already iyswim.

Also, convincing the statmenting panel, and should you need respite services in the future or social services input or support, or DLA at a better rate. That kind of thing.

But like I said, I think you have 'some' insurance anyway in the SPD diagnosis, but you can only have ONE primary dx, and I am assuming that is as!?

TBH, from what I have read, ONE of the reasons for getting rid of AS dx is because it is found to be unhelpful in that people are cutting support for those with it, so actually, by removing it, those with AS surely HAVE to them be seen alongside those with ASD, so perhaps it won't matter!?

Just an idea though.

Thanks. I will ask.

I've applied for DLA without a dx - it's mainly connected to DS' sensory problems.

The sensory problems are what we see the OT for so they would have to stop sensory based OT which means it would not matter whether we have an AS or ASD dx.

Sorry, I look like I'm being argumentative and I really don't mean to! It's just that AS is an ASD so I really can't see how services can say ASDs but not AS because AS is an ASD etc.

Oh well, that was a short lived relief.

debs I don't see you as being argumentative, you're questioning what we are saying to make sense if it all and make sure your ds has the right things written about him that will make a difference. Honestly, I don't mind.

I'm not trying to tell you what is 'right' because my situation is very different to yours and I can only draw on my own experience.

Like I said, it might not matter now. The issue WAS that AS was seen as something seperate from ASD, and that is why they are trying to get rid of it. When they do, all that will happen is that people with AS will 'automatically' become ASD in everyone's eyes and for criteria purposes. I can't see how they can do anything else really. And if it is a pita, then you can always go back and tell them you want a revised dx in light with the latest criteria.

It probably doesn't matter too much, particularly that you can always argue the SPD too.

Go with what you are comfortable with and what you feel is right. After all, you need to protect your ds from the future on one level, but you also have to address his needs now and it would be daft to sacrifice that for the unknown future.

Thanks Star. I am going to email the consultant. How should I phrase the question?

TBH Debs, I would email and ask for a telephone appointment and discuss it.

I think these things are easier done that way unless you are trying to create a record of the discussion, which I doubt you would need.

That way you can actually pander to her expertise rather than come across all demanding or anxious which it might look like in an email. You can explain your concerns and see if she can put your mind at rest, or whether she suggests given your concerns you might be better with an alternative dx.

I don't know what she is like though, but I think you'll need to have an opportunity to interpret her reaction to your questions for your own understanding of the issues!?

I'm sorry we've given you another thing to worry about. I promise it was only done with the best of intentions, not to give you a blinding headache.

Another way to to ask them to phrase the dx is for it to read:

Diagnosis: Autistic Spectrum Disorder, specifically Asperger Syndrome
or Autistic Spectrum Disorder (Asperger Syndrome).

That way it covers both bases.

I think it is mostly DLA and SS who may limit support to AS. And also just generally speaking about DS - I feel more comfortable saying DS has an ASD sometimes because I feel like the general public will take his issues less seriously if I say AS. But that is a personal thing, not access to services.

DS is very bright and we have cognitive tests indicating high IQ, so I'm not too concerned about lower academic expectations. If you're getting a private EP assessment which shows high levels of ability/potential, I doubt you need to worry about lower expectations.

Glad you finally got there debs

I saw your reply to my thread. I'm glad things are moving on your side too. You have had such a bad time with your ds's school, i hope the dx brings the help he needs.
Good luck with the statement route too.

Sugar we too have had a report indicating high IQ and the expectations are only lowered by people who misunderstand DS's difficulties without the label not with.

Star I'm just trying to get my head round what is being suggested and I know people are trying to help.

I suppose I just feel like I don't know what I am asking for really (whether by email or phone) save something along the lines of adding explicitly the diagnosis is of 'Asperger's which is an ASD'. But whether you add it, it is anyway.

DLA have to assess on needs not diagnosis and I have applied without a dx. I know things can change but they'd have to change drastically before I had anything to do with SS.

I can see that there is absolutely no harm in adding 'Asperger's is an ASD' to a report or are you saying the diagnosis should read ASD rather than Asperger's? I'm not sure the world is ready for that yet.

I specifically had my dx report amended to read ASD instead of AS - but it was a private dx and the paed was happy to change it. She said that she understood the reasons and it was a fairly common issue.

I think that if you're informed/determined then you will get the support you need regardless of what the dx says.

For me, I felt that it was also future-proofing a bit - I have no idea what services we'll need in the future and how local policies will change.

Services can't exclude dx of ASD because that would be excluding more serious autism, but they can and do exclude AS because that would refer to average/above average cognitive ability.

For the same reasons as sugar I had HFA removed. The Paed did skirt around suggesting aspergers but she didn't seem comfortable as he wasn't yet 3, but she sighed with relief when I mentioned I'd prefer generic ASD.

So, debs, that is what some of have done. Perhaps tell her that you have heard from some parents that certain dx can make getting provision difficult and that they are prefering more generic and what does she think!?

Morning Debs, havent read the whole read, just that you now have your dx and you are happy with it

Didnt get the chance to log on yesterday, but first thing i thought of this morning was i must check to see how Debs got on!

Will have a read later, after the school run.

Glad for you.

I think the problem with the HFA and AS labels is that people assume the autism is 'mild', when in fact it might be anything but. They are, quite rightly, high functioning individuals, but that's because of their cognitive skills - not necessarily because the autism is mild. This interview with christopher gillberg explains it much better than me. I don't know how old it is but it does recommend making sure that there is a statement to the effect that AS is a variant of autism in the report in order to ensure that there is no (well, less of a) problem accessing services:
www.lookingupautism.org/Articles/ChristopherGillberg.html

You're right catski. I've always been highly confused that we were told that ds was 'severely autistic' by most of the measuring tools, and yet at the same time, the paed called him HFA.

So what exactly IS he?

HFA means he is capable academically and cognitively, but he his 'severe' because he meets every single one of the criteria for diagnosis, so he has 'all the problems' associated with autism.

Perhaps that is also why I am more comfortable with ASD rather than HFA. I dunno. I hope debs figures it out to her statisfaction.