Parents of AS/HFA children......

[curvychick]

I would relish some advice from other parents who have journeyed on the asd diagnostic path. I am at my bloody wits end!

Have taken ds1 (7yrs 9 months) to see a whole host of professionals, OT,SALT, physio, paed, cahms and physchologist. I have a whole cupboard dedicated to various bits of paper that these people hand out in place of any actual real life support. To date they have identified a whole host of issues. He has sensory problems, dyspraxia/dcd, expressive language disorder, possible diary&gluten intolerances, hypermobile joints.

In all of the various reports i have collected, I can spot many many traits that would be found on the triad of impairments, but everyone refuses to entertain the possibility he may be ASD. This isnt helped at all by the fact that whenever we go to a bloody appointment, DS seems to turn into a totally different child and aside from a few random quirky incidents he doesnt present as asd at all. Where as at home, and to a lesser extent at school, his behaviour is totally different. Does anyone else have an ASD child who can present/act 'normally' for an hour or 2 every now and then?

He was absolutely awful after the appointment, to the point where i actually thought he was going to punch me in the face, it was like he put so much effort into the good behaviour while we were at the hospital, he couldnt deal with himself when we got back into his comfort zone again ie home. I asked ds why he could behave at the hospital but gets so cross and sulky and agressive at home. He said he didnt want to embarrass me He displays the same behaviours at school but not so extreme.

I am so exhausted and fed up of all of this. We have an appointment at BIBIC next month and hope that they will be able to see what he is REALLY like, not just the 'show' version of himself.

I feel so sad and defeated and alone in all of this. We get bounced from one professional to another, without anyone really doing anything.

Sorry this is so long and a bit ranty [embarrassed] just needed to get it off of my chest.

We had the same problem in that the Camhs team said that there was not enough evidence to diagnose Aspergers, we even had a second opinion and that was the same.

We sought out a private child and adolescent psychiatrist who had a particular interest in ASDs, and bingo, he diagnosed it straight away.

Thank you so much for replying Captianpig, i think that is our next course of action tbh. I really hoped that the second opinion from the ASD specialist phycholgist would herald a diagnosis at last but nope. We get alot of 'he has some asd traits' or 'his peronality type in its extreme is Aspergers' but no definate label, and until we get a lable, we cant access any proper support, i just want to scream with sheer frustration. I think because he is very intelligent and has good eye contact he has learnt how to act 'normally' but at home it all just catches up with him, and the effort that he has to put into behaving as a typical child of his age would, just wipes him out and we get the fallout of it. I have been told that i should be happy that ds feels safe and secure enough to behave like that towards us at home-doesnt feel like much to be happy about to me though. The phychologist yesterday told me that when he goes into a melt down and is punching and slapping himself in the face, i need to get him to do some vigerous exercise If i could get him to co-operate like that, i wouldnt be asking for help would i?!

Can i ask how you found your private psych?

DD1 is HFA and we have different struggles to the school which made dx a bit of a PITA. However, what I did before next appointment is to keep a daily dairy and get the video camera and go back though older home movies, made a big difference
DD1 is the same, manages to hold it together at school most of the day but by the end she lets rip, normal as soon as we get home
HTH

curvychick we had a similar experience. DS did not fit neatly into a category and so nothing much happened. We eventually got a diagnosis of Aspergers when he was 12. He would try really hard at appointments and come out and say "How did I do?" because he thought he had to be on his best behaviour.
His symptoms were more pronounced at school and eventually at Secondary School the SENCo said she would like to have him assessed. With all the evidence of his behaviour at school he was finally diagnosed.Not everyone fits neatly into a box and the professionals don't want to make a diagnosis unless they are sure.

I think that 'generalist' (as opposed to specialist) practitioners only do a bit of ASD dx as part of their job. This applies to most CAMHS and paeds. This may mean that they predominantly deal with the clearer cases as referral pathways are not particularly sensitive to children on the edges of the spectrum.

So, I really don't think that the specialism is there to deal with more complex cases. The consultant we saw at CAMHS recently had gone into school to see DS and said she was surprised that he didn't hit out when accidentally pushed or play alone at playtime or any of those other 'ASD traits' . She has a very simplisitc view of autism which is probably based on the experiences she has had.

I once emailed Tony Attwood who very kindly emailed back and confirmed that AS dx is very much dependent on specialist clinical judgment. in his book, he also says that dx tests like ADOS and ADI are primarily aimed at classic autism so might not be so helpful in AS cases. The clinician's experience and ability is crucial.

You can get a referral for a second opinion on the NHS to a tertiary centre where there is more expertise. This is not a right, but most CAMHS will agree after they have completed dx testing - I am trying to get a referral without going through the tests as I think it is quite clear DS is a complex case and they do not have the requisite experience.

If you want any details of tertiary centres let me know and I'll post them.

Debs, would love the details of the tertiary centres if you would be so kind. Am a bit worried now though, as the psychologist appointment yesterday was our 2nd opinion. Can i ask my gp to do another referal for another opinion or is this just taking the p?!

We found our specialist private psychiatrist by going to a local ASD/Asperger support group and asking for recommendations there.

Thank you captainpig, dont suppose you are in the buckinghamshire/oxfordshire area by any chance are you? The person you saw sounds like he might be able to see the real ds1, t'would be handy if you were near us

We're on the south coast.

Hi Curvychick, We are in the Oxfordshire area and have a DS(7) with diagnosed classic autism and a DD (5) with diagnosed Asperger Syndrome, my daughter was diagnosed two months ago at CAMHs, they said they could tell the minute she walked through the door. In my experience though, you are best going private if you can afford it, then go down the NHS route for further back up to help with educationl issues. Specialist Services for Autism (SS4a) on the NAS website are private and they cover the ox/bucks area, full day assessment and you get diagnosis at the end. They come to your house. Hope this helps xxxxxx

Interesting, the Oxford/Bucks Mental Health Trust are just about to take over our CAMHS - yes our service is clearly great! Are they any good???

As I understand it, you can apply for a specialist opinion if you haven't had one from a tertiary centre as it mgiht apply even if you spoken to another doctor in the same trust.

The centres are:
The National Centre for HFA at Gt Ormond St Hospital
The Michael Rutter Centre at the Mausdley Hospital, London
The Newcomen Centre at St Guy's Hospital, Lodnon

Thank you Jakejem and debs

I have had a look at the ss4a website and it looks like it is just what we need tbh, i think the fact that they come to your house would be ideal for ds. I have saved it to favourites as if possible i would like to explore all NHS avenues before paying out private [not alot of dosh emoticon]

Debs, i am now kicking myself as the paed we are seeing offered a referal to Guys, but didnt explain why, so i chose to take ds to the John Radcliffe which is where we saw the Psychologist. Bums! I will speak to my GP and see if he will refer for us....again

Have to say CAHMS in this area were useless for us...i was just tol;d to make sure that i spend 10 minutes every day just with ds I do already, if only it were as easy as that to solve all of his problems....

Thank you all for your help