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Question for Mizmiz :)

(11 Posts)
blossomgoodwill Wed 15-Dec-04 20:40:56

Hi Mizmiz

I have told you a bit about my daughter. She is 5 and attends a language unit as she has a language disorder. Just recently (after all the pros saying she didn't) the school have been saying she is on the spectrum but would never get a firm diagnosis. She has bits of everything it seems. Can you help me make sense of if she is on the spectrum why can't she get a diagnosis. I mean you either are or you are not. Just gets a bit confusing. I actually feel fine (surprisingly) about it all as it hasn't changed a thing. It just helps me understand why she does the quirky little things that she does

blossomgoodwill Wed 15-Dec-04 20:42:06

I just wanted to add thank you .
I had forgotten to add that

JakBFrostNippingatYourtoes Thu 16-Dec-04 18:56:48

bump

blossomgoodwill Thu 16-Dec-04 20:51:56

If anyone other than Mizmiz has advice I would be very grateful

mizmiz Thu 16-Dec-04 21:34:10

Hi Blossom

I can understand how frustrated you feel.
You say 'she either is or she isn't'
Unfortunately it doesn't actually work like that.
Firstly,language difficulties are not illnesses. You can't say someone has an SLI (Spec Lang Impairment)in the same way that you can say somone has Measles or Chicken Pox for example.
Even when a diagnosis is made, there will be much disagreement. I know many people for example who have a diagnosis of ASD or SLI and I don't think this is the case. Conversely I know many people who don't have such a diagnosis but IMO definitely do have an ASD or an SLI. I know this is the experience of many therapists, teachers,psychologists and parents.

Secondly, even if a diagnosis is made we are still talking about a spectrum, in other words a wide range of distinguishing features. in other words some people are 'more' autistic than others. Your dd may be hovering at the lower end of the spectrum.
One theory is that we are ALL on the spectrum (I talked about this in another thread a few weeks ago-I think you were part of it?)
There is no doubt that Autism is a much bigger issue than it was 20 years ago. Why? Is there more Autism about or have the criteria for inclusion been extended? I tend to think that the latter is the case. Kids who would just have been considered 'different' 20 years ago, now probably get a diagnosis. It may be that in 20 years, children like your dd who are now considered 'borderline' may be definitively and promptly diagnosed with an ASD.

Some people think that there are sinister reasons behind a lack of diagnosis (ie thus avoiding funding) Is this true? I don't know. In your case it doesn't seem to be an issue as she attends a language unit and I'm sure you know that these are as rare as hens' teeth. I would be very very glad about that-you are one of the lucky ones!!

Finally consider this; does a diagnosis change anything (about your child or the help they get)? From the posts I read on this it seems that more and more schools are resisting them. I think this is good-sometimes a diagnosis serves no purpose, not least because people then often expect a child to behave in a certain way, instead of just seeing him/her as themselves.
With regard to my own daughter (4 with lang diffs) the HV (also a friend) has taslked about her undergoing a Ruth Griffiths Developmental Assessment, but at the moment I am resisting. What for? It won't tell me anything I don't know and as an SALT I am pretty confident that the 'therapy' she receives at home with me is the best possible thing for her...for now anyway.

I can see interesting parallels with some of the recent discussions here re antenatal testing. Those who chose not to have it seem to be saying 'What for? What difference does it make?!'
The same often applies a long while after the baby is born!!

Some parents really want a diagnosis, some don't. May interest you to know that 80 % of S/N is of 'unknown aetiology' (ie don't know what caused it, what the 'syndrome' if any is)
That figure fits with my caseload.Also to me, most of them were just 'John Jones' or 'Susan Smith' not '15 year old male with DS' or '5 year old girl with Autism'
One last thing-traditionally the relationship between therapists and teachers is rather charged! We love to contradict each other.
They think we 'swan in and out' and we (sometimes) think that they are didactic and unimaginative in their approach and constantly moaning about their work...we would LOVE to have all our caseload (usually a 100 or so) in the same place at the same time!!!
(Don't have a go at me now you teachers!!! I work with some FAB ones, and a lot of my family teach. Just trying to describe a common scenario!!)

Blossom, don't know if this has helped. Hope so!!

blossomgoodwill Thu 16-Dec-04 22:09:40

Mizmiz

Thank you so much for your quick response. You have made so much sense and have really made me see things in a different light. In lots of ways it is a good thing that dd won't get a diagnosis as you and her school have said some children are hard to "pigeon hole". So we can just wait and see how develops and as you say we are in the fortunate position that dd's schooling is basically sorted up until her teenage years (head of unit said it is certain that dd will transfer to the local Ican Secondary school!).
I think language disorders are on the spectrum anyway and the way I look at it is that the underlying cognitive part of the brain that causes langauge disorders must cause adhd, autism, aspergers, dyspraxia etc. Looking at it in those terms makes much more sense I think.
Thanks again you are a star! Blossomhill

InternationalGirl Sat 18-Dec-04 20:42:12

Hi Blossomgoodwill - met you at last SN meetup briefly but unfortunately didn't have much time to talk.

My daughter has been dx with autism but appears to be more on the high end of the spectrum although has suffered global developmental delays which have until recently, for us, 'clouded' the dx. Her issues now mostly come down to speech language and communication so could appear more as a speech language disorder than ASD except for a few, fairly minor, but definitely apparent, behavioural issues . It's just such a fine line.

Sometimes I feel like it would be good to meet others with daughters like mine, IYKWIM, just to see and understand the differences. Girls and boys are so different sometimes in their development that every now and then I wish I could find a little girl like mine but it appears ASD is more common in boys than in girls.

My dd has had the Ruth Griffiths Developmental Assessment mentioned by Mismiz and all it really did was confirm what we had suspected - she is REALLY good at some things and definitely not others (ie. language and communication). It is probably really good if you have question of whether your child is at average levels or not.

My DD is defintely a little quirky and has specific things she likes (or must have or do) although not seriously extreme, but some of the teachers at the school still don't believe she has autism. Unfortunately they still think she is just naughty. It does make it difficult when everyone is not on the same page.

I am rambling but if you want to CAT me sometime feel free....

JaysMumWantsaSilentNight Sat 18-Dec-04 21:14:02

SorryBlossom for nicking your thread but Mizmiz can I ask a question?????

Our area only has a visisting SALT and she is not due to see us again for another 8 weeks. She has set us some work to do with J for his pragmatic and semantic speech.
We are using some Black Sheep work sheets.
AND I AM STUCK!!!!!!

One of the sheets we use is a game.....
There are pictures showing expressions...sad, bored, angry, happy, confused etc

Then we have lots of small pictures each showing a different scene...small boy crying because he has fallen and hurt his knee, boy holding birthday cake, boy sat in car looking really bored etc...

J has real problems putting the pictures in the right places.

He loves cars so can not understand how anyone could possibly bet bored because they have been in a car for to long!!! Why should a boy be happy he has visitors...J hates anyone coming into our house unless he really likes them!!!!

What do I do? Do I correct him and show him where the pictures should go and talk to him about why they should go there...or do I just let him carry on putting them in the wrong place and then talk to him about why he has put them there?

J has got a very low selfesteem and gets really cross because he knows he doesnt think like other people so I am a bit reluctant to tell him he has put the pictures in the wrong feelings boxes.....have tried suggesting that maybe the boy is happy because he has a birthday cake....J just said no he is angry because he doesnt like cake!!!!!

Help!!!!!!!!!!!

mizmiz Sun 16-Jan-05 22:45:04

Sorry Jaysmum
Only just seen this.
Does your ds have an AS/ASD diagnosis?
How old is he?
How good is his language and reasoning?
It's difficult isn't it? This is obviously an area that needs work, but as you say pointing out logical scenarios and causal connections can be so unacceptable to someone who thinks differently.

So much depends on the above but ASSUMING his language and reasoning are good, I would accept what he says and then gently suggest something along the lines of
'But other people might feel that.....'
He needs to be made aware of the fact that there are different ways of viewing/dealing with/thinking about things.

Salts deal with these sorts of scenarios in Social Skills groups which are usually quite good fun and allow children to role play and talk through various scenarios without being 'crushed' if you see what I mean.
Any chance of your ds getting involved in something like this?

Sorry I couldn't be more helpful. Obviously one that your really need to talk over at length in your next salt appointment.

JaysMum Tue 18-Jan-05 10:36:57

Thanks Mizmiz

I would discuss this with our SALT....only problem....after 18 months with no SALT in our area, we finally got one appointed. She has seen J and confirmed the SPD. It was the first time we have sat and talked with a NHS professional who actually understood what we were saying about J and his ?Aspergers.
I thought we were finally going to start getting somewhere.....
I should have known she was to good to be true!!!!
I contacted the SALT dept to arrange J's follow up appointment.....only to be told the SALT has left and the LHA are in the process of appointing someone else but this could take months!!!!!
Just hope and pray it's not another 18 months!!!

mizmiz Wed 26-Jan-05 14:59:54

Jaysmum, this is a BLOODY nuisance!
Is your child statemented with salt as part of statement? If so, you are legally entitled to it (as regularly as mentioned on statement) so that is a good weapon in your armour.
In the meantime, are you in a position to pay for at least a couple of sessions with a private SALT?
If you are, armed with your diagnosis and a reasonable commitment to working at home you could have a couple of appts. in which the salt could set you up with activities to do at home.
I know it's not acceptable, but you are at least not sitting feeling helpless.
Have you discussed this with others (eg Blossomhill, who knows a lot about Pragmatics) on MN? Have you done a search for Lang. Disorder Semantic/Pragmatic Difficulties, Language Disorder? There are some really good ideas being exchanged here, also links to some websites which are packed with ideas.
Let me know if you want to explore the private route-I can let you know how to pick out someone with partic. expertise in this field.
Just leave me a new message on a new thread ok, as some of these salt ones have got a bit confusing and I could miss it.

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