No DX today

[JenRose]

We saw the Consultant Psychiatrist at CAMHS today.

M was suspected of ASD last year but today she said that the ADOS test wasnt showing anything.

I mentioned his sensory problems with noises and smells but she didnt comment, she now wants to rule out anything else such as OCD, or Anxiety Disorder, she said M is showing Autistic Traits(i hate it when they say that) but the ADOS test showed otherwise.

 

We have a meeting in 2 weeks with both Consultants to plan for M as he is suffering badly with Anxiety.

 

She seemed to think it was something else that was causing it like, a new school or something from babyhood but he has always been this way from birth so we refuted that idea.

 

Do we take it that this is it for the Autism DX and that because the ADOS doesnt show anything that he cannot possibly me, we cant accept it because to us he is ASD,especially since i myself have AS and know why he reacts the way that he does.

 

Has anyone else been in a similar situation to this and if so please could you give us some advice.

 

Thanks

[Tez]

JenRose,

 

Sorry you didn't have the dx you wanted today. When A was assessed by the OT last year for his sensory issues she said that very often children with sensory integration dysfunction (SID) are often misdiagnosed as being on the spectrum when the aren't, even though the two can and often do exist together. The problems caused by SID mimic many of the difficulties apparent in children with an ASD. If his problems are mainly sensory and anxiety has anyone thought that this might be the problem with your son.

 

For us the problems caused by A's SID are far harder to deal with than those more directly associated with his ASD and certainly most of his anxieties stem from his sensory problems.

[JenRose]

Ive heard of that before Tez, what really puzzles me is yes he does have sensory problems but he also takes everything literally, has problems with socialising and commuication and has to have advance knowledge of everything as well. Could the be part of SID?

[Tez]

Not so sure about the taking the things literally but definitely yes to the socialising and communicating and needing advanced knowledge of everything.

[Zemanski]

sensory processing differences can cause all sorts of symptoms - if for example a child can't read emotion in a face then it is difficult to access information about feelings and intent so might lead to literal interpretations in the same why as the difficulty reading emotion due to AS might.

 

Apparently blind children have this problem with social communication sometimes

 

just a thought

 

Zemanski

[JenRose]

thanks zemanski and tez, its confusing isnt it?

M seems to have all the traits of ASD but no dx, how can you have the traits without having it?

[BusyLizzie100]

Surely they are not relying on just the ADOS as to whether or not your child has an ASD? My son's ADOS was borderline but, on the basis of the parental interview, an art therapy session and a school visit they confirmed a diagnosis of AS. Yes, his anxiety etc may be due to other things but if they're going to rule something out, they should absolutely rule it out properly.

 

Good luck

[kirstie]

Can you tell me what the ADOS test is please?

I have heard a few people talking about it but i'm unsure as to what it is.

Thanks.

[JenRose]

Yes it does seem that they are relying on the ADOS, M,s clinical psychologist was convinced that he would be dx,d as late as last week.

She has spent 9 sessions with him and told me that in her view he is AS but that she had to refer him to the specialist who-today said that the ADOS says no to AS.

 

She was saying maybe his problems are because he doesnt have any friends,- and why doesnt he have any friends?

Becuase he doesnt know how to socialise, i cant believe the excuses that they come up with, i think the only reason i was dx,d was because the psych admitted to me that adults with AS dont have a lot of treatment to choose from-hence not costing money.

 

She also said he showed imagination and ASD kids cant do that, i couldnt be bothered to challenge her but am i right in thinking that has been changed to theory of mind?

 

Also she said he talked easily with her, yes well if you talk about Star Wars, Star Trek or Spongebob Squarepants he WILL!!!

 

I have a feeling that they are going to concentrate on the anxiety part of his ASD and nothing else and she asked me would i consider medicating him.

 

I dont know how i feel about that to be honest.

[JenRose]

kirstie, ADOS is Autism Diagnostic Observation Schedule? i think ive got it right, Basically M had to play with toys,engage in conversation,use his imagination.

 

The whole test took 30mins and is then scored to see if the child is on the Autism spectrum, M scored low because he has "imagination" and ASD children dont have that she said.

 

Thats whats got my back up, 30mins and her definition of ASD kids not having imagination and he,s not ASD.

[UltraMum]

Surely they don't just rely on one test? or do they? J was diagnosed by reports from home, school, GP and his behaviour in the paed's office.

[UltraMum]

Can you tell me what the ADOS test is please?

I have heard a few people talking about it but i'm unsure as to what it is.

Thanks.

 

There's some info on the NAS website about this and other diagnostic tests: http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=306&a=3280

ADOS is about halfway down the page ...

[JenRose]

They have a report from school saying that he has difficulties in socialisation in the playground and that he stammers or goes red in the face if he has to answer a question, and also that he gets really upset if he gets things wrong,

they have the psychometric test showing that he has obsessional behaviour, they have the meetings with us as his parents where we have told them of his difficulties from being a baby but the doctor we saw today was basing her outcome on the ADOS test and trying to direct us into managing his anxious behaviour by putting him on ssri,s.

 

We have a meeting on the 14th of feb with M,s original consultant who was convinced he is ASD and also the doctor that we saw today.

 

As we are not happy with what has been said we feel that we ought to put our point across, but how we are not sure of.

[Bullet]

JenRose, if the only reason why your Ds was placed low on the ADOS was because of his imagination, then it may need looking at again. Many people with ASD do have very good imaginations, but apparently there are differences between them and an NT's imagination.

Edited February 4, 2006 by Bullet

[UltraMum]

We have a meeting on the 14th of feb with M,s original consultant who was convinced he is ASD and also the doctor that we saw today.

 

As we are not happy with what has been said we feel that we ought to put our point across, but how we are not sure of.

 

Could you ring/write to the original consultant and have a discussion with them about this before this joint appointment?

 

What experience has this consultant Psychiatrist with autism? Do they specialise in this? or are they a general psychiatrist? What training have they had with ADOS? You could say that you want a second opinion?

 

Has M been seen by an educational Psychologist? - that's another route but time is obviously short

 

Regarding imagination: I always understood that it was not 'lack' of but an impairment in imagination ...

 

Temple Grandin talks a lot about her imagination in her 'Thinking in Pictures' book and website

 

There's a recent paper:

Drawing Impossible Entities: A Measure of the Imagination in Children with Autism, Children with Learning Disabilities, and Normal 4-year-olds

Authors: Leevers H.J.; Harris P.L.

 

Source: Journal of Child Psychology and Psychiatry and Allied Disciplines, Volume 39, Number 3, March 1998, pp. 399-410(12)

 

Publisher:Blackwell Publishing

 

Abstract: Contemporary findings suggest that the imagination of autistic children is not as limited as was once thought. In contrast, Scott and Baron-Cohen (1996) claim that children with autism are unable to draw pictures of impossible entities. An experiment showed that children with autism, children with moderate learning disabilities, and normal 4-year-olds were equally successful at identifying real and impossible pictures and at completing pictures to make them look either real or impossible. The previously reported inability to draw ?impossible? pictures is unlikely to reflect an imaginative deficit and may instead result from a misunderstanding of the task or limitations in the executive abilities required to plan and draw an unusual picture for the first time.

 

There's also this:

Full version available here:http://www.autismresearchcentre.com/docs/p...00_Craig_BC.pdf

 

Story-telling ability in children with autism or Asperger syndrome: a window into the imagination.

 

Craig J, Baron-Cohen S.

 

Department of Experimental Psychology, University of Cambridge, UK. sb205@cus.cam.ac.uk

 

BACKGROUND: Autism spectrum conditions are diagnosed on the basis of impaired imagination. The present study used a totally free story-telling method to assess if narratives produced by children with autism or Asperger Syndrome (AS) contained fewer imaginative events. METHOD: In Condition 1, children were offered an imaginary theme and asked to elaborate a story. In Condition 2, they were offered a reality-based theme with the same instructions. Comparison groups included 13 children with autism, 14 children with AS, 15 children with moderate learning difficulties (MLD), and 14 normally developing children. The non-autistic controls had a verbal mental age (VMA) either equivalent or lower than the autism and AS groups. RESULTS: Both the children with autism and AS were less likely to introduce imaginary elements into their stories in Condition 2, though the children with AS were more able to produce imaginative narratives than children with autism in Condition 1. CONCLUSIONS: This study provides experimental evidence for imaginative impairments in story-telling in children with autism spectrum conditions. These are discussed in terms of two cognitive theories: executive dysfunction and theory of mind. LIMITATIONS: In this study it was not possible to match the children with autism and AS with each other on VMA, as the children with autism were not as high-functioning. Future research could examine VMA matched groups of autism and AS.

[OPooh]

TBH to give a child a dx of autism can be damaging as well as helpful to them - is the way the professionals see it. They are not saying that the autistic problems are not there (hence the traits) but they are saying that not all the traits are there (hence has imaginative play).....that's their opinion.

 

This happened with me too when my ds was 2 years and 9 months.....they even convinced me to go and see a CPN incase it was me (and I did because I'd do anything for my kids!)

 

Now over 7 years later they are finally agreeing with me and he's in the processes of being diagnosed.....you know what you know so don't give up.

 

Good luck <'>

[JenRose]

Wow, i dont know what i will say, the original consultant is really nice and im going to phone her on monday and tell her that we are disappointed that the psychiatrist is basing her non dxon the ADOS.

 

Apparantley the psychaitrist is a specialist in ASD, but when i asked her could it not be that M had HFA she said no it would have shown up, she did keep referring back to his imagination and that ASD kids dont have it but I DO and i am ASi dont have imagination like NT,s i have to be shown something then i can imagine things from items just like M did. If she had asked M to make up a story from nothing then he wouldnt have be able to do that.

 

Its just that he has all the other symptoms that are part and parcel of ASD, he cant stand noises,smells he flaps when excited or distressed,he has strict routines,he doesnt know how to socialise with his peers.

 

She said that M has a good knowledge of how his reactions affect other people, well thats news to us, we can never get him to see how he makes other people feel.

 

We feel that M put on a performance for the psychiatrist, he hoodwinked her, he knew what was coming because he can be a little actor when he wants.

 

If he knew the way his actions made other people feel or that they werent the right way to gain freinds then he wouldnt do it and the fact that he doesnt really have a special friend is evidence of this.

 

The psychiatrist is handing us back to the Clinical psychologist on the 14th and she is the one who was convinced that M is ASD but she said that she didnt want to dx him because she isnt a specialist.

[UltraMum]

<'> <'> <'> JenRose <'> <'> <'>

 

Will be that this gets sorted and soon ...

 

I forgot to say hello! - just realised you are new!

[JenRose]

hello back!

[darky]

this seems totaly wrong to me!! both my younger 2 have had so many assessments done as part of a full asperger assessment. speech and language, occupational therapy, physiotherapy, and educational physcologist, not to mention a behaviour and socialisation questionare filled out both home and school as well as a two hour appointment to take extensive history. after all this has been done, i can feel "fairly" happy the professionals have done all they can to identify if my kids have an "asd" i cant believe that this person is basing this on one half hour assesment!!!

 

my daughter was diagnosed with pdd-nos and not aspergers, because the educational pyscologist witnessed my daughter placing her hand on a boys shoulder during a wet play.(so she says) this indicated she uses non verbal cues to get what she wanted. this totaly contradicted what the speech and language therapist noted when she done an assessment on my daughter during a "normal" playtime and also in the classroom, but what can you do? i contested the report, but consultant still had to listen to all the evidence he was given!!(even though it seemed to me they were basing her dx on the one thing)

it is so frustrating, its like the proffessionals look for the window of opportunity to say AHA! that child dont have an asd whoohoooooooo! consultant scratches head and thinks "well we can always give a dx of pdd-nos just to keep the parents quiet and ensure the child does get minimal help" sorry am on my soap box now!!!

[rainbow queen]

hi jenrose

 

my son had ADOS too when he was younger and they told me some things he did were and some wasnt and that was also 30 mins test.

 

at first i excepted this but now ive got bit wiser to all this im not backing down and i had to tell them i disagreed with there test results and keep pushing.

i went back to my sons peadtriction and told him i was not happy and i wrote several letters and pages on info on what my son dose.

i am now on waiting list for camhs and have seen some other people who now are not ruling it out-i have demanded a dx.

 

 

its so frustrating when people dont listen-but you know yourself if things arent right

 

so dont give up because i didnt and im not going to till im satisfied that they are taking notice.

 

p.s this has been going on for 3 years at least up to now.

[microsoft_admin]

We saw the Consultant Psychiatrist at CAMHS today.

M was suspected of ASD last year but today she said that the ADOS test wasnt showing anything.

I mentioned his sensory problems with noises and smells but she didnt comment, she now wants to rule out anything else such as OCD, or Anxiety Disorder, she said M is showing Autistic Traits(i hate it when they say that) but the ADOS test showed otherwise.

 

We have a meeting in 2 weeks with both Consultants to plan for M as he is suffering badly with Anxiety.

 

She seemed to think it was something else that was causing it like, a new school or something from babyhood but he has always been this way from birth so we refuted that idea.

 

Do we take it that this is it for the Autism DX and that because the ADOS doesnt show anything that he cannot possibly me, we cant accept it because to us he is ASD,especially since i myself have AS and know why he reacts the way that he does.

 

Has anyone else been in a similar situation to this and if so please could you give us some advice.

 

Thanks

 

 

my dx came from a combination of the ados and disco tests

[KarenT]

We currently have this problem in reverse. J scored highly on the ADOS and the result placed him within the spectrum. Speech and Language, IQ/Psychometrics showed the same. Howeve the inclusion of other tests (observation, mainly) have failed to meet the criteria for Aspergers so they won't diagnose anything at all at this stage. We're now being told to 'treat him as normal' until proved otherwise, although he clearly has numerous AS traits across the spectrum.

 

Good luck in your quest, jenrose!

 

Karen

x

[jlp]

My son didn't score very highly on the ADOS test but we were told at the time that this didn't rule out the possibility of an ASD, following school and home visits and many, many parental interview hours then about 7 sessions of play with an OT he was diagnosed with AS.

 

Hope this helps <'>

 

PS My son is also highly anxious even on the asd scheme of things, we were asked about medication but following a team meeting it was decided he was too young (he's just turned 6) so it wasn't a decision we had to take at this time.

 

xx

Edited February 6, 2006 by jlp