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ASD: follow on from moondog training day

(13 Posts)
Justgotdiagnosis Tue 09-Apr-13 22:19:56

I'd just found out my little boy had pervasive developental disorder before coming on the day... but it was very much a holding diagnosis...
Except it has now been changed to ASD
He was seen by a paediatrician who he has met before but the bulk of the assessment was done by a specialist SLT, one he has never met before. So I feel he would have performed better if it was someone he was familiar with. I don't know if that makes a difference.
I felt for a long time that ASD was likely, that is why I got him referred. But there has been a lot of improvement recently.
And I'm just wondering : could this still be a child with autistic traits but who doesn't meet the threshold for full ASD (what we were told PDD is and what I was starting to come to terms with) who would have performed differently with a different SLT who he knows and scored better...

Could this be a speech disorder that is presenting as ASD?

I'm feeling very mixed up...

pinkoddballs Tue 09-Apr-13 22:28:10

I know you are feeling mixed up but do you know why it matters to you which it is? I think with a diagnosis of ASD you are more likely to be able to access the "help" for the symptoms even if it is the other if that makes sense.

StarlightMcKenzie Tue 09-Apr-13 23:03:55

I don't want to underplay how you feel right now, as its importance at this point in time is huge, but I think as time goes on what it is called won't be relevant.

Your ds is your ds, and ASD or PDD there'll be no-one else like him and your 'work' will be to find out how you can help and advocate for him, taking other peoples strategies that work and fighting against some generic ones that you know are inappropriate.

'Could this be a speech disorder that is presenting as ASD?'

Yes. That can happen. And dx can be added to or removed. What matters right now is that you have something which can open doors and have you listened to and gain you access to things that you have judged will help your ds and your family.

DS was dx with ASD. It has been queried by other professionals at other stages. Some have wanted to add dx, and others have wanted to play down the ASD in favour of other things. I've decided to just stick with the ASD as it is straightforward yet still flexible enough to be whatever I need it to mean in order to help ds.

A dx isn't a prognosis.

Justgotdiagnosis Tue 09-Apr-13 23:05:58

Yes, pinkoddballs, you are right, I know that on some level.
It is why I got him seen in the first place, to be able to access the help he needs.

I'm fearful, of being judged and excluded, him and us. I have been "warned" about this by a family member (who advised me not to pursue referral) - someone much older and I guess with outdated attitudes. However since it was mentioned I have noticed it happening but think perhaps they have primed me to be paranoid.

I know in reality it is going to be OK
It's just going to take me a while to get to that place
It has been a difficult few years of limbo, with everyone saying different things, so it is just going to take me awhile to get my head around.
It explains why these early years have been such hard work. My gut instinct was right.
I still can't believe they said it wasnt ASD when I told them it was time and again.
It all feels very odd, like I'm losing my grip. I think a good night's sleep is order.

StarlightMcKenzie Tue 09-Apr-13 23:10:33

You'll be alright Just. You're here. You came to a training day. You're on the right path. (I know you don't want to be.)

It's damn painful in the early days but that doesn't last.

Justgotdiagnosis Tue 09-Apr-13 23:10:47

Thanks Starlight. I didn't know that dx can be added to or removed. Appreciate you posting, I will sleep a bit easier tonight.
What you have written is very eloquent and wise. Thank you.

Justgotdiagnosis Tue 09-Apr-13 23:11:58

Thanks for your second post starlight too. I think I'm typing really slowly..!

StarlightMcKenzie Tue 09-Apr-13 23:40:51

I wonder whether the change from PDD to ASD is to do with the new guidelines too.

There are some dx that were given that cannot be given from the beginning of April. Aspergers being one and PDD quite possibly being another, with the advice to simply give a dx of the umbrella term of ASD.

If that is what has happened, then your ds can still have PDD in the same way that people with Aspergers still have Aspergers iyswim.

And people who have dyslexia who are supposed to have specific learning difficulties, but usually prefer to use the term dyslexia.

Perhaps you could call the paed to double check, or ask on here.

Justgotdiagnosis Tue 09-Apr-13 23:47:53

Oh I see. In fact what they were saying was ASC. So "condition" rather than "disorder"
I was a bit thrown as had never heard of ASC before.
It's all very confusing.

StarlightMcKenzie Tue 09-Apr-13 23:50:36

ASC is just the trendy renaming of ASD.

StarlightMcKenzie Tue 09-Apr-13 23:54:55

It is confusing. I think that is why they are trying to be a bit more 'general' in their dxing.

Paeds didn't appear to agree between them what was what, and most of us on MN have different opinions about what our children have, or what class/version/comorbid conditions play a part that may or may not have been diagnosed by a NHS or private professional.

That's why you mustn't treat it as a prognosis or a curse. It is nothing more than a signpost. It will make people take just a little bit more notice when you ask for something. They don't really care what it is 'called' as provision is likely to be the same. They just care that it is 'official'.

Justgotdiagnosis Wed 10-Apr-13 05:50:44

That makes sense. It helps.

moondog Wed 10-Apr-13 16:26:42

Hi Justgot
I am sorry you are feeling confused although not surprised. The way different labels are loosely bandied about is confusing and to compound issues, it isn't always clear what is meant by terms such as 'speech' 'language' and 'communication'

Firstly PDD suggests general delays in all areas.
All children will perform differently with different people at different times of the day. In many ways, it is best if they perform at their worst as then the risk of glossing over thier problems is minimised. I always tell people that I have to play the bad cop in this respect. I'm not helping anyone if I pretend a child can do what he can't. An honest basdeline is essential.

I wonder if you have further confusions as you say this?
'Could this be a speech disorder that is presenting as ASD?'

Speech refers solely to the sounds that a person makes so I am not sure how a speech disorder could be misinterpreted as ASD. Do you mean a language disorder, in that 'language' refers to ability to use and understand words to give and receive information to/from others?

Either way, the label is only relevant if it gets you access to people who can help. I really don't care about what 'it' is called, and I don't mean that in a right on way. Of far more interest is presenting abilities and difficulties and the profile for each child is very different even if they both have diagnosis.

Do not waste your energy or allow others to waste theirs on obsessing over labels. Focus always on a jargon fre description of what is causing concern and ensure that there is a clear data driven plan to deal with these difficulties.

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