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Original poster

Please help me make sense of whats on my sons records

28 replies

mrshess · 27/05/2011 15:32

Hi after gaining online access to my sons medical records could someone tell me what it means.

Basically son had had issues for a number of years and i have had to push for every bit of help and often feel im being humoured.

Son underwent ados test and wasnt diagnosed so we are left in limbo as to whether he has special needs or not.

anyway after reading his record it says

Speech or language developmental disorder NOS with autistic traits but not enough to justify autism

We knew his speech was very delayed but he now talks very advanced for his age and uses very formal words which have been mentioned by school and his speech therapist so does this mean he doesnt have a disorder anymore or not?

Also what do the letters NOS stand for?

What would you take form this as no one ever tells us anything and we are made to feel like we are wasting people's time by pushing for help yet the speech therapist still wants to monitor him

Any help would be much appreciated thanks

OP posts:

Original poster

mrshess · 27/05/2011 15:33

Sorry another question is autistic traits not enough to justify diagnosis does that mean he is borderline?

OP posts:

IndigoBell · 27/05/2011 15:34

I think NOS stands for 'not otherwise specified' - which means they can't specify his disorder any more precisely.......

IndigoBell · 27/05/2011 15:36

How long ago did he have the ADOS?

Do you still think he is has ASD?

Not all speech disorders mean you have trouble speaking. You may have trouble understanding speech or finding the right words to use or things like that.....

Original poster

mrshess · 27/05/2011 15:38

Thanks for the reply so does that mean they are not sure what is up with him?

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Original poster

mrshess · 27/05/2011 15:40

Hi yes we think he does have ASD, he had the test about 9 months ago, he still has all the issues he had at time of testing apart from his improvement in speech.
We dont know what to do anymore as we get told he s not autistic and yet he still carries on with his obsessions

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IndigoBell · 27/05/2011 15:49

Yes, I think NOS means they don't really have a clue :)

Do you think it's time to try a private paed?

Besides obsessions and speech difficulties, what else are you worried about?

How bad are his obsessions?

Original poster

mrshess · 27/05/2011 16:01

He has had an obsession with hoovers for 3 years now and he has a very obsessive personality, we have to be very careful in not starting a new obsession
e.g he cut his finger and we put a plaster on and he became very distressed if the plaster was peeling off and he screamed blue murder and kept scratching at himself for a new one and then he needed plasters on his other finger and would wake up at night checking he had a plaster on and it would constantly be on his mind about plasters and having spare ones just in case.
He then would ask for plasters veen though he didnt need one but would want them on

He isnt very good with other children and he cant pretend play with objects, he does say he is a dinsoaur (one of his latest obsessions) but he has figures of them and he doesnt do anthying with them.

He has major issues with sleep and doesnt sleep through and often wakes up and cries even if he is in our bed

He is fussy with food and underweight and also has a very small head on 2nd centile but they say its fine but it doesnt grow much at all.

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IndigoBell · 27/05/2011 16:04

Sounds like lots of reasons to be concerned :(

Can you afford a private paed?

IndigoBell · 27/05/2011 16:04

Or, can you just assume he does have ASD and decide what treatments / therapies / dietary changes you will do.....

smileANDwave2000 · 27/05/2011 16:07

NOS on medical notes does mean not otherwise specified yes , how old is your DS mrshess ? sometimes if hes not presenting as yet enough, for want of a better word autistic traits, it could be hes AS but this may show up more the older he gets my DS's speech and and vocabulary are very good but he still needs a lot of SALT, it sounds like your DS has communication difficulties , my DS was behind as a toddler though and had some problems with pronounciation but that was at age 2 to 3 , so im wondering if its what they call a working DX ie : it may change the older he gets lol or indigobel is spot on and there just morons who are clueless

Original poster

mrshess · 27/05/2011 16:10

We cant afford a private paed but we are checking my mums insurance as she has health insurance which names my son but not sure if they will do 2nd opinions if son already been seen by someone.

We do assume he has special needs but after the school just saying he is quirky and him not being diagnosed we sometimes think is it just us who can see there is more.

Could i ask you what dietary changes we could make?

Thanks for taking the time to reply x

OP posts:

Original poster

mrshess · 27/05/2011 16:15

Son is 4 and half, i dont think its a working diagnosis as we get fobbed off every time we see dr,
and paed has said he doesnt need to see him again so we are left thinking how does that solve all his problems
They have said he has behavioural issues and we are sort of made to think we cause his obsessive behaviour

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smileANDwave2000 · 27/05/2011 16:19

sorry did i miss where you mentioned his age? can i just add mrshess that my DS is ASD & Dyspraxic and moderately so it was obvious to us from very early on age 2 but because for quite some years he was okish in MS they disagreed and didnt give us a real DX its only when things became dire in school they all suddenly sat up and took notice so im wondering if thats whats happening to you , also some MNrs say their DCs are good at school and have all these problems becoming more apparent at home and some vice versa obviously the ones that display more worrying traits at school seem to get noticed first IYSWIM

smileANDwave2000 · 27/05/2011 16:20

ooh not good no when they say there signing him off basically i think its your right to go to a GP and ask for a second opinion though indigobel prob knows more about that though

smileANDwave2000 · 27/05/2011 16:24

have they looked into PDD? as a lot of symptoms overlap

IndigoBell · 27/05/2011 16:24

No, I don't know about getting a 2nd opinion :)

All I do know, is that you don't really get any more help if you do have a dx.

So just pretend you have a dx. Join your local NAS group. Research everything there is about it etc.

A dx (while being very comforting) isn't really a magic ticket to anything. So just assume he has got it and go on with living........

If GP won't refer you for a 2nd opinion, (which I think they have to) then just keep going in every 12 months begging for a referral.....

But the main thing to do is to decide what you are going to do about his obsessions - and a dx won't give you any help with that decision....

Original poster

mrshess · 27/05/2011 16:26

Im hoping when son starts reception in sep they will notice as he is only in 3 hours a day now.

OP posts:

Original poster

mrshess · 27/05/2011 16:29

Smileandwave no they havent looked into anything else we have just been told paed doesnt need to see him anymore.

Indigo im frightened of attending a support group and would feel like a fraud as they have said he doesnt have autism even though i know something is wrong. Do people go with no diagnosis?

OP posts:

IndigoBell · 27/05/2011 16:30

Yes, people go with no dx. A lot of people struggle to get a dx.....

smileANDwave2000 · 27/05/2011 16:33

thats so true its still very hard and you have to continually fight for every bit of help , information ect i agree with you id wait a bit and try again it was second time round i got help first time i was fobbed off and it turned out i was right (tut) we mums know a thing or two grrr buy a book about ASD/AS like Tony Attwood the complete guide to AS ive a great one called Autism for dummies which is so easy to understand but a mine of info have a look on amazon and a good one to read with DS is all cats have Aspergers which is lovely. and come on here for any help but thats what i did before dx just treat as if you have a dx already. I wonder where you are wether you can ask to be ref to GOSH depends how far that is for you though.

Oblomov · 27/05/2011 17:12

My story is similar. Did ADOS with private Child Pyschologist. Ds1 was 6 at time. She said extreme in certian areas, but didn't tick enough boxes to give diagnosis. Left in no-mans-land. Refered to CAMHS, just had a DISCO assessment. Given diagnosis of ASD or As, my choice.
Ds sounds quite like yours. He is very bright and thus school refuse to see any problems, but they are there !!

Original poster

mrshess · 27/05/2011 17:38

What is Disco assesment please?

We were referred to CAHMS before he went ados test but not actually sure what they did as didnt see anyone i think just socila worker said she was passing us to them. Its so hard to keep up as we have seen a lot of people but they all pass you along to someone else

OP posts:

mariamagdalena · 27/05/2011 18:47

Hi.

Very few GPs would block a request for second opinion. Particularly since with a pure language disorder, behaviour problems and quirks would normally improve once the child can communicate ok.

Or you could ask them to flag up slightly different concerns so that it goes through the private system as a new problem (and given he 'doesn't' have autism according to the first assessment, that might well work).

On the other hand, as has been said above, you might want to wait a bit for the clinical picture to become clearer. If you do that, consider indigo's suggestions of joining the groups etc anyway After all, there's nothing in asd child management which would harm a non-AS child and a lot that might help. And you need support with or without a diagnosis (and whatever it eventually turns out to be).

It's also worth clocking up a parenting course or two. You're likely to get a few helpful ideas, and even more importantly it proves his behavioural issues don't stem from parental ignorance or apathy. If you know which school he'll be going to, see if they (or a neighbouring partnership school) do one.

Oblomov · 27/05/2011 18:51

ADOS is supposed to be the best.

Maybe she didn't do the proper one on us.
ADOS, seemed,very quick, we did in one short session, maybe an hour. It seemed very basic to me, and not that in depth. I think there were maybe 40 questions.Then she met ds, for 30 minutes. And told us he didn't tick enough boxes, for an AS diagnosis.
CAMH did DISCO. why I don't know. Like I say, genertal consensus, is thta ADOS is best, I am probbaly unusual, in thta it wasn't for us. CAMHS,I met, discussed, and met twice more, and then, we did the DISCO assessment in 2 sessions, both lasting over 2 hours. Seemed very detailed to me. I managed to give her every issue, every event that I thought was important. She then met dh and had 3 hrs with him.

I don't know what DISCO or ADOS, **is, I can only tell you that we have done both.

Oblomov · 27/05/2011 18:55

He is due to start school . Is he at pre-school ? what do they say. My school seem totally dismissive and think there is nothing wrong with ds. But on MN, many people have very supportive schools and often pre-schools, and its the nursery/pre-school that comes to the parent and says they think there may be something 'there'.

what are other people saying to you about ds ?

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