Major rant

[jenk1]

this is a long one so excuse me.....

Just got back from CAMHS with ds.
Psychiatrist has changed his mind about ds being AS because he spent half an hour with him and asked him would he substitute pizza for sausage and chips on a monday and ds said yes.
Psych-"Asperger people dont do this they would say no "

i said yes but s and chips is on his list of acceptable foods so that is ok psych "no an asperger person wouldnt do this"

And- in my opinion you DO NOT HAVE AS...

He spent 20mins telling me that i may have ASD or AS traits but that im not AS- and why is a diagnosis so important anyway?

I told him that its VERY IMPORTANT TO ME as i can now get help that i need-"what sort of help do you need, you do very well i mean youre married youve coped so well so far"

At this point i got very annoyed and proceeded to tell him about my childhood-how i knew i wasnt like everyone else my obsessions etc, yes but "normal" people can have obsessions, you are not AS but probably ASD, he had the copy of my psychiatrists letter in front of him and when i asked him to read the part that says"in my opinion it is very likely that Jen has an Asperger type syndrome" he says yes but it doesnt mean that you have, i argued with him but he would not have it.

He then said that DS seemed like a "NORMAL BOY" WHAt

I thought mental health professionals didnt use the term normal anymore.

He then said he was no expert in the field of Autism.

DH very annoyed and wants to complain and ask for another doctor to see DS.

Oh and the psychometric tests dont mean anything they just prove that DS is clever and DS needs the ADOS test and that will prove if he is AS/ASD.

[jenk1]

Oh and adults shouldnt be diagnosed with AS it should be done when they are children.


Pillock

[COPPERfeelunderSantasTOP]

How can someone who admits he is not an expert try to overturn the dx of someone who does know what they are talking about????? Grrrrrrrr!

[jenk1]

i know he was bordering on the point of obsessional in trying to tell me that i am not AS.

I said to him that my mental health worker has been told i am AS by my psychiatrist and that was why i was referred to the mental health centre i attend but he wouldnt have it.

[christie1]

Funny, we are going throught the formal assessment process and the reaction after one 1/2 visit was the same. He is an above average, intelligent boy with no autistic tendancies because he was playing and talking about dinosaurs to the doctor. I did get through that I in no way wanted a diagnosis, I couldn't deny his problems with peers, motor skill difficulties making him fall behind because he can't write the tests fast enough and, other things like his patterned running, chewing of stuff etc. I can go on. I was able to open his mind and he is going to see us for more visits. If he says no AS, great, that has always been my hope but I know there is something there. Your doctor sounds ridiculous. He is affecting your sons future on a 1/2 visit.

[ImdreadinganAUTIExmas]

Oh dear. Where do so called professionals get these ideas from. Has he administered an ADOS (or other test- ADOS is often used for academic research purposes- what about the DISCO or something like that?)

[jenk1]

Christie- totally agree and understand your situation, he even said that ds answered his questions and an AS person wouldnt have been interested.

DS has told us that he played with sand and was only asked a couple of questions, Do you like blue clothes-yes, would you wear other colours, well i would but i prefer to wear blue.

He said he might do the ADOS test at a future date.

He is disregarding everything the psychologists have said or their works with ds, he was more interested in telling me that i didnt have AS.

[jenk1]

can someone tell me what ADOS is and what it entails?

thanks

[jenk1]

I feel like im going mad, in just 20mins the psych has wiped every good thing i have started to feel about myself over the last few months.

I dont understand his reasoning,

1, i cannot be AS because i understand that hurtful comments upset people.

2, that DS today acted like a "normal child"

3, that the psychologists work over the last 8 months proves nothing but that DS is a highly intelligent boy.

4, Me and DH said that with the help of the behavioural psychologist DS has has relaxed more and doesnt have meltdowns everyday-but NO, a true boy with aspergers CANNOT CHANGE ROUTINES he said.

Jimjams/Baka/Davros/Mrs F and all you mums of AS/ASD children does this sound right because i am starting to feel that everything i have been told about from the clinical psychologists is wrong and i especially dont understand why he has come down so hard on my diagnosis- DH says its as if he,s trying to get one over on us.

sorry to go on but im really upset tonight and DH just keeps saying not to let him upset me-but thats me- ultra sensitive!

[COPPERfeelunderSantasTOP]

What a load of rubbish! Ds1 has a dx of HFA rather than AS but can often easily pass as NT. He can now cope with changes to routine as long as he is given a clear idea of what will be happening instead. He can still get upset by relatively minor things but full-on meltdowns are uncommon these days. I think his last major one was during the summer holidays.

Ds1 will also quite happily answer most questions if they are fairly specific. "What did you do today?" is too 'open' for him and the usual answer will be "I don't know". However, he will happily tell you his favourite colour/food/computer game etc.

The reasons for disputing the dx sound pretty feeble to me.

[ImdreadinganAUTIExmas]

He sounds as if he doesn't know what he is talking about. People with little knowledge are dangerous. I was told by a dietician (!!) that ds1 couldn't be autistic because he picked some toys up and put them away when I told him to - and he's severe, so they have no chance with HFA

DS1 can easily change routines if told several times before, so that's a load of bollards. I do know of this happening a lot btw, so don't feel alone.

Can you get an assessment from someone else? Oh just read it was with CAHMS. Well have to say I am not surprised, CAHMS seem to be allergic to dxing ASDs. Honestly everyone I know who has been anywhere near CAHMS has had the same problem. Your ds needs to see a developmental paed, and/or clinical psych specialising in autism,

JJxx

[jenk1]

DS has been seeing 2 clinical psychologists this summer- he has seen them a total of 8 times.

they have done psychometric testing and extensive assessments with him and they are 99.9% certain that he is AS/ASD.

Does it really have to be CAMHS that diagnose him because we were really happy with the clinical psychologists, they have helped a lot with DS behaviour this year and helped us to cope with him as well.

I really dont want DS to see this psychiatrist any more but dont know how to go about getting a paed to see him-any ideas?

[ImdreadinganAUTIExmas]

God no, CAHMS shouldn't be dxing him- it sounds as if the clinical psychs are far more useful. I'd try your GP, explain the situation. But a clinical psychs dx should be a worthy one iykwim.

[jenk1]

CAMHS psychiatrist is pooh-poohing everything that clinical psychology has said.

I have a letter from clinical psychology saying that in their opinion DS is probably on the Autistic Spectrum, psychiatrist wouldnt even acknowledge it.

What are CAMHS for- do they help after a dx has been made?

[jenk1]

Thanks celia2 it helps to see that other children with ASD have the same problems.

[itllbelonelythisdavros]

Haven't totally caught up on this thread but I was going to say "get thee to a Developmental Paediatrician"...... a CAHMs psychiatrist with little experience of ASD is not the right person for a dx (unless they were good of course )

[jenk1]

phoned ds clinical pyschologist to tell her whats happened but she,s on annual leave until the new year, as it was she who referred ds to CAMHS then im going to ask her to re-refer him to the Developmental Paed.

I wanted to phone the psychiatrist up this afternoon and BLAST HIM, but DH says not to make enemies so i havent done that.

Oh and he also said that "DS was answering my questions and didnt seem to be interested or anxious,"

i said "no, thats because we have been preparing him all week for today and what you might ask him and also he tells lies, if he knows the correct answer to a question but cant be bothered answering and getting into a discussion then he will say the easiest answer-not necessarily the truth"

"No no no no no - people with Aspergers DO NOT LIE - they cannot its impossible"

We thought that CAMHS was going to help DS with his anxiety not to pull apart his dx from clinical psychology, - oh and another thing "Whats he got to be anxious about?"

[MeerkatsUnite]

Your GP may be able to refer your son to a developmental paed as well.

[jenk1]

thanks meerkat, ill see if my gp will refer him

[ImdreadinganAUTIExmas]

I think its common jenk and celia. Trouble with these people is that they're read the books, but have had no real life contact so they misinterpret what is said (for starters they all change "difficulty" to "imposssible"). Useless people. I think a strongly worded letter to the superiors saying that this man is dangerous because a)he doesn't know what he's talking about and b) he is inappropriately fiddling with clinical dx could eb in order. My friend went through this with an ed psych. She told the clinical psych who had dxed- and who happens to be very senior in this area- and she sorted it all out. The ed psych was in trouble.

[jenk1]

im confused, sorry if it sounds a bit thick- so DS clinical psychologist-2 of them, say he is ASD/AS and have done psychometric tests, they have referred him to CAMHS for his anxiety etc,DLA have written to clinical psychologist and from what they said have given us meduim rate DLA and mobility- so can i take it that this is a dx as i thought you had to have it all properly in writing.

Also dont understand why this silly psychiatrist is meddling, i am going to send clinical psychologist an email so that she gets it when she gets back after xmas.

Thanks

[dobbin]

jenk1,
replying to your earlier question about the ADOS, it is the autism diagnostic observation schedule. It is essentially a structured play-based procedure that is used to diagnose autism/ASD. It is in 4 modules, where module 1 is used for non-verbal or pre-verbal children and module 4 is for highly verbal adolescents or adults. It is used to provide a series of observed, structured situations that will prompt or highlight autistic behaviour. For small children this will be looking at things like their imaginative play, their ability to show joint attention, their ability to anticipate shared behaviour like peek-a-boo and their ability to share pleasure. For the older children and adults it looks at a range of things, including their ability to engage in reciprocal conversation, their ability to show insight into the behaviour of others, their ability to establish rapport etc. The people who administer it undergo a long training and have to be re-trained every year to maintain their skills and to ensure everyone scores it in the same way. It should take about 20 mins (younger children) to an hour to administer.

[dobbin]

Sorry, I forgot to add, I am very sorry about the trouble you're having with the issue of diagnosis at CAMHS. If you don't trust their view, ignore it. You will always get people who think they 'know' autism/ASD but if they don't know as much as you, then their view is worth very little. From what you have said, a specialist in the field would not use such 'pop' criteria.

[itllbelonelythisdavros]

Jenk, I think you should have a dx in writing and it wouldn't necessarily be the reason you got DLA. Once you have it in writing from someone reputable then ignore anyone else unless you think they have a point.

[jenk1]

We have had a letter from clinical psychology saying that in their opinion it is highly possible that ds is ASD/AS and goes on to list reasons why eg:

High ability
High ability in the context of some noticeable obsessional tendencies
Observed literality combined with obsessionality would give rise of DS being on the Autistic spectrum.

Would this be good enough as a written dx as it was sent to us by a Consultant Clinical Child psychologist.

We are very happy with the work they have done with DS and us helping us both to come to terms with his behaviour and managing it and they have backed us up to school.

We feel that we dont want CAMHS to have any more involvement with DS and that the stratagies that psychology have given us are working very well so much that we dont need some psychiatrist pouring scorn over everything.