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Original poster

Autistic Traits

43 replies

jenk1 · 28/02/2006 17:11

What does it take to get a dx for DS?
Ive just come back from clinical psychology with DS, the psych says no to ASD,HFA,AS.

So what is it then i asked, well he has Sensory problems,OCD,severe anxiety,need for rigid routines-in other words complex needs.
Oh and Autistic Traits, i said to her, i dont understand how can you have Traits and not have Autism?
Well its obvious that the gene is in your family as you have AS but that in DS case its not manifesting itself enough to warrant a dx and the fact that he can socialise means that he is not dx.
So i said "Well I can socialist to a certain degree"
Then i said that i thought the latest research was theory of mind and she said well yes DS does probably have a problem with theory of mind. Shock

What the heck do we do now?
How can he have ALL these symptoms and yet they refuse to dx him?

Feeling very angry and upset, hence the rant.

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Anoah · 28/02/2006 17:20

I had a similiar problem when my son was first assesed. I don't know what the deal is with these people.

My son has a language disorder but its hardly noticable, does not form relationships with others, has a rigid routine, obsessions, meltdowns, speaks in a monotone, is in his own world, no imagination, no theory of mind, little eye contact etc etc.

First paediatrician he saw said it is all because he is speech delayed. He says to me "if you were suddenly dropped into the middle of China you would have socialization problems because of the language barrier. Its not ASD." I could kind of see his point but I really had to resist the urge to put my fist up his nose anyway.

Anoah · 28/02/2006 17:20

Sorry to double post but would they consider PDD as a diagnosis in your situation?

Original poster
jenk1 · 28/02/2006 17:26

Whats PDD Anoah ive heard of it but not sure what it means.
thanks

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Socci · 28/02/2006 17:38

This reply has been deleted

Message withdrawn at poster's request.

Original poster
jenk1 · 28/02/2006 17:47

the psychiatrist said that she doesnt like to label a child.

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sphil · 28/02/2006 19:48

Jenk - just a thought - would BIBIC do it?

getbakainyourjimjams · 28/02/2006 19:50

bibic don't dx. although their reports can help in getting a dx.

sphil · 28/02/2006 20:00

Oh - I was sure they said that they would dx DS2 this time if he hadn't been dx already.

Original poster
jenk1 · 28/02/2006 20:04

we have thought about BIBIC, that would be ok if we could get the funding. Smile

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monica2 · 28/02/2006 20:39

Sorry to hear you are still battling with this,

PDD - Pervasive Developmental Disorder is the technical medical term for the class of syndromes which involve a severe deficit in Social communication development. The PDD's include Autism, Aspergers, Rett's Syndrome, Childhood Disintegrative Disorder and PDD NOS - Not otherwise specified. A person diagnosed with PDD-NOS still has a severe impairment in social and communication etc but does not possess all of the other characteristics associated with the disability in a severe enough from to warrant an autism or AS dx. HTH

Original poster
jenk1 · 28/02/2006 20:58

Dont think they will dx with this as they see it "he is sociable", well yes if you talk about spongebob and star wars of course he is but if you see him around and about in real life then he,s not GRRR

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KarenThirl · 01/03/2006 07:52

We're in the same boat, Jenk. J's assessment ended in November and was inconclusive due to insufficient evidence at that time, even though it seems that they've based the decision on evidence observed by professionals involved in the assessment and disregarded parental history (that's another story). I too can't understand why they haven't given an interim dx of PDD. We're now waiting for a second opinion referall to a local autism expert but that could be July or August.

In the meantime J's doing incrediby well, largely I think because of the improvements resulting from cranial osteopathy - it certainly hasn't 'cured' him but has improved his responsiveness and enabled us to have windows of opportunity to discuss self-management strategies, and it seems to be working. My concern now is that all this positive work we're doing on him ourselves will mask his problems and have a negative effect on the next assessment. In the same way, you've said that you can 'socialise to a degree' but that's learned behaviour I expect rather than something that's happened naturally.

Keep at it, and I hope you get your dx for your son soon.

emmalou78 · 01/03/2006 08:09

jenk.

I don't know what to say, this must be sooooo frustrating for you all... would the NAS be able to help?

How old is your son? I know you've said before, but I know someone whose son is either HFA or AS and he didn't get a formal dx till he was 10 the school, GP and specialists all told his parents he was just a naughty boy.
After years of dogged persistance they found someone who dx him as HFA, and he got a place in teh special school in a nearby city, the progress he has made there is overwhelming, and his dx has been altered to AS, though his mum maintains he's both..

keep plugging away.

you'l get somewhere eventually,

emma x

Original poster
jenk1 · 01/03/2006 12:57

thanks karen and emma DS is 9 btw Smile

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PeachyClair · 01/03/2006 13:09

Jenk, exactly waht our last paediatrician said.... no labels, but Aspergers Traits.
Assessment other day? Possible HFA / aspergers, awaiting SALT.

I swear they make it up as they go along, it depends entirely on your Paed / Psychologist.

Sad for you, I know how devastated we were when we didn't get answers we needed.

BIBIC never turn anyone away for funding, and we have found them great. If you call them they don't charge for first telephone assessment then they will send you a list of fundraising ideas, we found via that a charitable association linked vaguely to DH's job that pays. can I ask what he does for a living? Or you, of course(past jobs often OK)

Original poster
jenk1 · 01/03/2006 15:29

DH is a baker and i havent worked for over 4 years, im on benefits would that count?

Do you think that DS time at BIBIC has helped get the "professionals" to take notice more?

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PeachyClair · 01/03/2006 17:43

If you're on benefits then they fund you.

Our paed certainly took notice of the fact DS1 has been to BIBIc, but more importantly I think the program suggested by them has actually helped Sam progress markedly.

I would give them a tring. Would you go to the Welsh one or the Somerset one?

And a placement includes accomodation in Somerset too, BTW. We used to live 2 miles from that centre and we are within ten minutes of the Welsh one now. I ahve worked with them in the past also, deliveringbtraining on Autism to our HomeStart volunteers and was really impressed.

Original poster
jenk1 · 01/03/2006 21:52

Oooh i think i will ring them, we were going to take DD a couple of weeks ago but didnt need to as her hospital (a different one to DS,s) pulled their finger out and dx,d her with CP and she,s getting all sorts of imput now.

I dont mind which one we would go to as we live near Manchester so it doesnt really make much difference i suppose, im confused by something you put in your post, you said your ds is getting SALT, what do they do?
Hope you dont mind me asking. Smile

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PeachyClair · 02/03/2006 17:19

Speecha nd language therapy, they have to assess Sam here as part of the dx procedure. Somerset didn't even bother Angry but apparently is being sorted here Grin.

because Sam does have unusual langauge (has spoken like an adult from about 18 months) that would mean a dx of HFA instead of AS.

lars · 02/03/2006 17:37

Jenk1, just read your thread and I totally understand your frustration. I 've finally got a diagnosis for my ds and insisted on a second opinion. Which the child phsy did do, to his collegue and he has now a diagnoisis of ASD. Again he has complex needs and doesn't fit all the boxes. The speech delay was the reason why he was having extreme behaviours, so I was told. But I knew myself it was more than that and kept nagging for more assessments.

It is very common for Doctors not to diagnoise children until they are 8 yrs, partically if they fall into a grey area. I notherwords there not too sure.

I hope all goes well and don't give up. larsxx

Original poster
jenk1 · 02/03/2006 19:50

thanks peachy and lars, DS is 9 though so i hope that this will be sorted out soon. Smile

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Davros · 02/03/2006 20:30

Sounds like BIBIC could be the answer Jenk, or at least a good step on the path to the answer. Good luck with funding.

Original poster
jenk1 · 02/03/2006 20:42

i have just had an email from a psychologist recommended by the NAS, he says that DS needs a full assessment of all his difficulties that he can carry out.
The only thing is, if he does dx ASD, then will the LA/school accept what he says?
Does anyone know.
thanks

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lars · 05/03/2006 16:02

Jenk1, The school that ds is at were only to pleased to know that another doctor was doing an assessment of my ds. I can't see why they wouldn't take note as it's a doctor's report. After all maybe your ds never had these assessments before, like my ds.

The child phsy that ds is under said opinions can go one way or another. If I just shut up and said nothing and agreed, my ds would have gone unproperly diagnoised.

Now he can get the right sort of help that's needed and not seen as just a naughty boy when dealing with frustration. The report I recieved gave the school suggestions of what to expect and what would be useful and will also say if the child need one to one support. Hope this helps you, BTW my ds is 8yrs and is has been a real struggle to get further assessments. larsxx

Original poster
jenk1 · 05/03/2006 17:00

Should have added that this psych is a private one so thats why im unsure of whether they would accept what he says, funding etc

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