Wish us luck please!!!

[loobylou2]

Got my daughters ADOS assessment this afternoon Hoping to fit in a quick ciggie break (or 2 ) 3 hours is a loooong ole time!

[ASue67]

Good luck <'>

[jo jones]

yeah good luck xxxxxxxxxxxxxx

[NickyB]

Good luck to you

[Flora]

best of luck with it all. Make sure you enjoy a nice glass of wine tonight (or a cuppa) and try to put it out of your mind until the results are analysed....

 

Flora x

[Bagpuss]

Hope it went ok Looby <'>

[loobylou2]

Thanks everyone. It turned out to be about an hour instead of 3! From what she has told me I think they have had fun anyway. She had to teach the doc how to brush his teeth and was disgusted, said "don't you know how to brush your teeth yet? urgh!!" She then had to look at catrtoon pics and describe how the people were feeling and how she knew. She didn't have a clue about that or how she could tell if she was happy or sad. She had to choose 5 objects out of a bag and make up a story about them. That was a doddle for her. Then she got to play with some dolls and did a murder mystery story with them!!! She said when she had finished playing with them, she had to turn one over them over, the doc asked what she was doing and she told him " turning it over cos I don't like the way its looking at me" In the end she had to hide the doll under the chair cos she was convinced it was looking at her funny Her usual doc was in another room observing her through a one way mirror/window. She was supposed to retell a story to him, but refused declaring "I'm not standing and talking to him through that" So she told the doc in the room with her the story instead. Any way she had a great time which was good as she won't be worried if she has to go again. Just waiting to hear their conclusions now, they said they would be in touch 'soon' so hopefully it will be this week.

[hev]

let us know the results loob <'>

[Sooze2]

I'm glad it went well. I hope the results come through quickly.

[Bagpuss]

Thanks everyone. It turned out to be about an hour instead of 3! From what she has told me I think they have had fun anyway. She had to teach the doc how to brush his teeth and was disgusted, said "don't you know how to brush your teeth yet? urgh!!" She then had to look at catrtoon pics and describe how the people were feeling and how she knew. She didn't have a clue about that or how she could tell if she was happy or sad. She had to choose 5 objects out of a bag and make up a story about them. That was a doddle for her. Then she got to play with some dolls and did a murder mystery story with them!!! She said when she had finished playing with them, she had to turn one over them over, the doc asked what she was doing and she told him " turning it over cos I don't like the way its looking at me" In the end she had to hide the doll under the chair cos she was convinced it was looking at her funny Her usual doc was in another room observing her through a one way mirror/window. She was supposed to retell a story to him, but refused declaring "I'm not standing and talking to him through that" So she told the doc in the room with her the story instead. Any way she had a great time which was good as she won't be worried if she has to go again. Just waiting to hear their conclusions now, they said they would be in touch 'soon' so hopefully it will be this week.

 

<'>

[loobylou2]

Just had a phone call from the psyc..... got to get the results from the ADOS tomorrow!!!

Think i'm pleased, but worried about the outcome at the same time!

[Flora]

Just had a phone call from the psyc..... got to get the results from the ADOS tomorrow!!!

Think i'm pleased, but worried about the outcome at the same time!

 

Oooh, that was quick! What time's your appointment. Let us know how you get on. You probably won't sleep tonight!

 

Flora X

[Bagpuss]

Just had a phone call from the psyc..... got to get the results from the ADOS tomorrow!!!

Think i'm pleased, but worried about the outcome at the same time!

 

Will be thinking of you tomorrow x <'>

[bikemad]

Will be thinking of you. <'>

[loobylou2]

Thanks everyone! Appointments at 11.45. Fingers crossed!

[loobylou2]

Ok we've been for the appointment. really don't think they have a clue about ASD. Can't work this one out, the doc said no she hasn't got Aspergers but..... IF she had been seen by them at 5,6or 7 years old then YES she would have had the diagnosis no problem! They said that she is nearly but not quite on the autistic spectrum Not sure what to do next, do I ask for a second opinion or what? My understanding of AS was that you don't grow out of it, just learn social skills and tactics to help overcome any problems, so to my mind she does fit on to the spectrum but has developed enough skills so that its not so obvious. What do you all think?

[Flora]

Hi loubylou

 

When my youngest son was assessed a very similar thing happened. Basically he was given the diagnosis of semantic pragmatic disorder, specific learning difficulties and autistic tendencies. I accepted this at the time. Then when he was a bit older (and we had relocated) I requested his notes from his assessments. There was a letter to my GP which explained their conclusion but went on to say that 'they felt he was on the autistic spectrum but in light of his brother's recent diagnosis I did not feel this would be helpful to his family, so have outlined his difficulties as an alternative to a label of autism'. I actually spoke to the diagnosing consultant after reading this, and apparently during my appointment he did say this to me, but I don't remember it.. I just remember feeling a massive sense of relief that he wasn't autistic (it's amazing what you do or don't hear when you're looking for a specific answer). However, he did say that if he'd been assessed a year or two early he would have been diagnosed with autism. He also went on to tell me that while he had considered my son being on the autistic spectrum, he did present with some strengths that put a bit of doubt in his mind which was another reason why he listed the difficulties rather than labelling.

 

I was a bit p'd off at the time when I found this out. However my son's 11 now and while he continues to have some difficulties, and certainly I'd agree with the consultant that he is on the spectrum, I'm quite happy to go with the list of difficulties because in some areas he is so high funcitoning, that even with the possiblity that he is autistic, we (and he) manage well without the specific diagnosis. If his problems had got worse, or if he wasn't so happy, I think I'd be seeking re-assessment but at the moment I'm happy to leave things as they are. I have AS and wasn't diagnosed as a child nor do i think I needed to be. Some people do slip through the net because for whatever reason they are functioning ok within their environment, and think my youngest son is similar to me in a lot of ways!

 

Sorry to have harped on about my own experience, but I wanted to illustrate that a lot of thought will have gone into the consultant's conclusion and rather than rush forward for a second opinion, perhaps you could wait a year or two to see how she develops as she gets older? Perhaps you could discuss it further with the consultant and the possibility of them re-assessing her if her problems continue and/or get worse?

 

I know that this will be hard for you, because you want definitive answers now, but just thought I would give you a different perspective.

 

Flora <'>

[Bagpuss]

Looby, I'm sorry, it must be difficult to come away without any answers

 

 

How does your DD feel about it? Does she want to persue it or not?

 

<'>

[loobylou2]

Thanks you two. Flora, that was interesting to hear your experience, thanks. Baggy, she's really upset as she just wanted an explanation for the way she is and feels that the doc is being dismissive. Its all a lot to take in at the moment. I think the doc is more interested in the bi polar than anything else and he has made his mind up that is what she has. I personally feel that she has more aspergers signs than bipolar and have even had to suggest better forms of medication for her. i.e he did not know how powerful risperidone was or that you could get it in liquid form! So I don't have an awful lot of faith in him really. Maybe I just can't accept the truth though. I just don't know

[Bagpuss]

If your DD is upset Looby I'd persue it hunni <'>

[Flora]

: So I don't have an awful lot of faith in him really

 

loubylou,

 

Aaaaah, that puts a different perspective on things, ie, I had a huge amount of faith in our consultant as he'd just dx my eldest son with AS and he was an expert in ASD. I think from what you said in your last post that it would be in your case appropriate to seek a second opinion. Not least because your dd has expressed her feelings on this. I'm sorry, when I was typing out my garble before I thought your dd was younger, but it sounds like she's probably a bit older than I thought. How old is she?

 

Flora

[loobylou2]

She's 14 Flora

[KarenT]

Loobylou, your assessment sounds very similar to our experience in J's first one - even though we had a paediatrician saying she was 99% certain J was on the spectrum, the psychiatrist felt he didn't tick 'all the boxes' so he came away with nothing - no dx at all, not even PDD NOS or any indicator that he had any problems at all. This despite the fact that the earlier panel meeting to decide dxs had clearly and unanimously agreed that J was 'not normal' for want of better phrasing. So without a dx J was considered to have no problems whatsoever and we continued with the naughty label for anothe two years till he got his actual dx.

 

All I can say to you is keep pursuing. Request a second opinion and don't give up till you get some answers.

 

Karen

x

[Flora]

She's 14 Flora

 

Ok, then I agree with KarenT, don't give up until you find out for sure what's going on. In a younger child it is sometimes worth seeing how they develop as they get older, but I don't think this is appropriate with a 14 yo.

 

Flora <'>

[loobylou2]

Anybody got any suggestions as what to do next? Have agreed with dd that we will sit down together and write a list of all the things she stuggles with and has panic attacks over with the view of presenting it to the doc. They had been in touch with school who had said that she has lots of friends and they have no worries about her! They described her as 'quirky'!! They obviously haven't got a clue what goes on!! Just don't know what is the best way to turn next I just wish that the docs had told me first their descision so I could have been prepared for her response instead of telling us both together and then expecting me to know how to handle it.

[jo jones]

sounds like us also,,,blaine dont tick the boxes,,,and so on,,,,but at least they had to listen when i said all along that he had sensory probs and when we went to o/t this was confirmed,,,i thought i was going mad,,,,but as i said before cos i work in autism im lookin for it???????????? so the child psychologist says!!!!!!!!!!!!!!!!!!!!makes u sick dont it,,,,,,,,,,,,,,,,

[smiley]

Second opinion time me thinks hun <'>