D Day today

[jenk1]

this afternoon at 3.30pm we go to see the ASD specialist for the results of DS ADOS assessment, we have been told that we shall find out today if he has ASD or not.

We are hoping for a dx because DS is out of school due to severe anxiety and really needs the help that a dx will bring, please can you all send us "positive dx vibes" for this afternoon!!!

hi, we are in a bit of a mix over the diagnosis for our son too. He had an ADI in december 2005,he is coming up for 7. The clinical psychologist felt that he met two areas of the criteria for ASD completely and the other two were uncertain as he behaves well in school. He felt it was PDA. The psychiatrist said that as far as she is concerned he is on the ASD, and has started him on Risperidone to help with his terrible anxiety and aggresive behaviour. The school SENCO has said that PDA is on the ASD, so we really don't know who to believe?

i know its very confusing and doesnt help an already stressful situation. The psychiatrist wants me to put him on prozac, and i dont want to do that at all, ive been on and off prozac myself for years and i dont want DS to do that.

We want the underlying cause to be treated which we feel is ASD rather than sending him away with a prescription for prozac and "oh he could have an anxiety disorder, an OCD disorder and communication problems" and what are they all part of? ASD. Im just glad that the original Consultant has requested him back because she might be able to do something.
Whats PDA if you dont mind me asking, and whats the next step for your son?
CAT me if you want a chat because it seems we are both in the same situation with regards our DS,s

I don't know what PDA is either..... I think that there is no such thing as autistic traits/tendencies, its like being a big pregnant iyswim! You're either on the spectrum SOMEWHERE or you're not, I don't think there is much blurring but people, inc some profs, like to think/say that.

its probably just their way of shutting me up by agreeing that he does have some AS traits but also their safety net ie, they dont have to dx him as a result.
Me and DH have decided not to let this psychiatrist who only saw DS for 30mins change our mind about what we already know and the psychologist who has seen DS a total of about 8/9 times.
We are not going to give up as its clear that DS is suffering badly atm, the psychologist said a while back that she didnt want to dx him as she wasnt a specialist but tbh she knows more than the dr who saw him the other day!

they have been saying to us that our ds has traits of this that and the other for years now. From what i understand (I could be wrong, pda (Paathological Demand Avoidance) children are pretty much unable to follow demands from people, IE, anything that means that they are not in control of the situation. although my ds seems to be as good as gold in school, never loses his temper there, and seems to always do as he is told for the teachers! I am sure in our case it is just a way of shutting us up rather that get to the route of the problem. I am sure that a large percentage of children would fit the label if it was given, not all of them would be sn at all. Personally having too been on Prozak, I don't think I would have given it to ds until I was absolutely sure that they had the dx correct.

we have just applied again for a statement assesment. Not holding our breath though, we applied 2yrs ago and the LEA would not assess him. It is difficult to know what the next step is for our ds. He is struggling quite badly at school and as a result gets very anxious and aggresive most days when he comes home. The ms school that he attends say that he needs more support, but that they are giving all that they can as things stand without a statement!!Does your ds have really irrational fears? mine is constantly asking all kinds of daft things . The worst one recently was"are you going to die when you go into the garage? God knows where that came from, but you wonder what thoughts must go through their little heads when they ask questions like that.

Yes, last year DS said "if dad dies will i get the day off school for the funeral?"

Just matter of fact.

We have applied for a statement but im not holding out much hope tbh

just out of interest, did you have any concerns about your ds when he was a baby which made you think he may have something wrong? My ds had Strep B meningitis when he was 3 weeks old, but nobody can tell us if that is related to him being on the AS

Jenk - I find this all very strange. My DS has just been dx with ASD as you know, but in no way does he fit all the criteria - he's affectionate, has no problem with change, little rigidity, no fears, no meltdowns, only a few mild sensory issues..I can't help thinking that if I had seen the same people as you, he wouldn't have been given the ASD dx either! Talk about postcode lottery.

DS was diagnosed using the DISCO - after a year in which he had puzzled all the medical people he'd seen. They all said 'speech and language delay with autistic traits' - it was only the DISCO that confirmed him as def ASD. Having said all this I agree with Davros - I don't see you can have ASD traits without being ASD - surely that's what's meant by a 'spectrum'!!!

Jenk1

is there anyway you could have your ds assessed by a team review? thats how my ds was dx, his pead, clinical psych, SALT, advisory teacher, HV, and senco [no idea why he was there, elijah seems to be his personal asd freakshow...]all had a long meeting where they basically compared notes and came to a decision. there were also reports from audilogy, orthptists, and the Sn nursery he breifly attended.

We were never referred to any Acronym titled agencies, it was al doem by teh consulants and specialists we see ona regular basis, WHY don't all helath Authorities work like this?

I hope you can press for further reviwing of your son and get a dx for him ASAP. Awful as it is, without a label he won't beable to access all teh helpand services availiable to him

And one last thing, can tehy prescribe prozac to under 18's its an ssri isn't it? which were proven to increase suicide rates in children..

mixedemotions-when DS was born he had breathing difficulties and taken off me and put into SCBU for the first night, i have always known that something has not been right,i had him assessed by GP,s and HV,s when he was little but was told that "oh hes just a bit lively".

Sphil- im glad you ds has been dx , in the part of the uk where i live, in the north west it is well known for our health authority to be sadly lacking behind others, i had to wait 18months to see a counsellor and i feel that they have just fobbed me off with "well hes got autistic traits but could be attachment issue,OCD or anxiety disorder here,s some AD,s to make you shut up and go away. But im not going to shut up or go away.

Emmalou- DS Consultant clinical psychologist has recalled him back to her dept, why we didnt know but think that she knew last week he wouldnt be getting a dx and she was absolutely convinced he is ASD, she has spent hours with him and done the psychometric tests and watched him the way he is with us, im hoping that she will be able to do something as she mentiond last week that one of her colleagues dx,s ASD,s, dont know why she doesnt but first thing tomorrow ill be on the phone to her you can bet!

really hope everything works out well for you x

Jenk1
hope you get somewhere with the phonecall tomorrow!

a referral to a psyche who can dx would be very very good, I really really hope you get your son the dx he needs.

No not very good news, Consultant said "i dont think that a dx is the most important thing its treating DS for his anxiety thats the most important"

Well, yes it is but the dx is important to enable us to get furture help for DS in school and for him to get statemented.

Phoned NAS and they said its wrong that the psychiatrist said no to ASD on the basis of the ADOS and that ASD kids do have imagination,they just have it different to everyone else which is what i already knew, they said request a referral to the specialist in my area and gave me the name and its not the name of the psychiatrist who saw DS last week, so we have a meeting on 14th Feb and i will be asking for that.

Of course you want them to deal and help with the anxiety, but what about you as a family. Do they not think that you need to know why your son is the way he is. Until very recently before my son was diagnosed, I used to beat myself with the "what an I doing wrong, why is he hitting me, why can I not control my own child?. Obviously a dx doesn't change anything that is happening around you, but I think I personally find I have more patience with him, and feel that I can now stick 2 fingers up at anybody that thought that i was a c* mum. Good luck Jenks, it is so bloody hard to keep going I know but at least your son has you fighting his corner for him.

thanks for that message mixedemotions it was really nice

jenk1, I'm sending you all my crossed fingers in the hope it might help you make some headway for your DS.

Surely a key to easing his anxiety would be to identify the problem, which i'd guess is all stemming from the liklihood of AS/ASD and how its affecting his sense of self and how he fits in the world...
its ridiculous, they're so keen to treat the symptoms instead of establishing the cause of them.

take care.

emma x

Completely agree with what mixedemotions said. Altough ds doesn't have a dx when the paed told us that he thought it was most likely AS I found it really helped even though they won't dx him before he is 7. DH too says that thinking of his challenging behaviour as part of a disability makes it easier to stay calm and that has a knock on effect as the clamer we are the calmer ds is.

Looking at ds behaviour in the context of him having AS makes sense of it - everything just seems to fall into place. And since we have been using the kind of techniques that are recommended for use with children on the spectrum ds behaviour gets better and better.

I really hope that you get what you need from that meeting. Good luck

I don't suppose any of you live in southampton? It is such a shame that we can't all sit down with a drink (tea of course!!!), and have a proper natter.

Fraid not i live up in the north near to manchester, thats not so near!!!!

no not really. Oh well at least there is this net. let me know when you put the kettle on and i'll do the same. Hope you are feeling a bit better today. My youngest had the s&d bug last night bless him. God help me if the other one gets it. He has been through 12 months of asking "will I be sick if I eat this, Have I eaten too much?