wrongly diagnosed aspergers???

[kerrybobs]

Hi,

 

I havent been on the site for a while, so Hello to everyone.

 

I will give you a bit of background. My daughter Robyn was diagnosed AS in November 2004 aged 9 from a specialist from Alder Hey Hospital Liverpool. We then went through CAMHS and she was given the same diagnosis from the child psychologist. We had a family therapist who we visited once a month. We had problems with the school from the start who said Robyns behaviour was of no concern at school. She was & still is on school action plus for learning difficulties.

 

We were told that Robyn thrived on structure so that is why her behaviour was so different at school than at home. After Robyn was diagnosed I did lots of research and it was like someone had switched the light on, I had now found the reason why my daughter behaved the way she did.

 

She started secondary school and we have had a very rocky time with Robyn. She followed children home from school who she wanted to be her friends (but they did'nt want to be hers) She shouted at people and got into numerous fights on the way to & from school. She has no road sense. In the end we got a taxi from the education. (After a long fight). As the hormones are kicking in she is getting a lot more violent and her mood swings are unbareable.

 

She was assessed by the Ed psychologist who did numerous tests on her and he advised that he put her difficulties down to aspergers.

 

Our family therapist was given another job so we where given another one who advised she did not feel the diagnosis was right.

 

We went for ADOS test today at camhs and I sat in the office looking through a window observing my daughter doing the tasks they set her. The video camera was not working and there was no sound so I could not hear what was being said. The child psychologist sat with me and asked me the same questions that I have answered for the last 3 years. Advising that she was 5 weeks premature that I had steroids whilst pregnant. That she was 4lb 11oz. Adv that she did not crawl she walked at 8 1/2 months.

 

We then had to wait whilst they discussed between themselves the outcome of the test. We where called back in and was told 'Good news she does not have aspergers'. Talk about being flabergasted. They looked at me and said I should be happy. I said why are you going back on the diagnosis, if she does not have aspergers then what does she have?????????

 

Are you ready for this???????????

 

Post Traumatic Stress Disorder!!!!!!!!!!!!!!

 

Apparently she is supposed to have gotten it at birth and because she did not crawl she did not learn co-ordination so that her brain could transfer information???

 

I should be happy, they said?????

I asked why does she have sensory problems?? Why does she bark & make stupid noises?? Why is she unable to have a proper conversation without shouting & screaming?? Why does she blurt things out that are not appropriate?? Why does she tantrum all the time?? Why cant she make friends with people her own age?? Why does'nt she sleep?? Why does she collect stones, carrier bagsetc?? Why is she violent I went on & ON & ON.

 

The answer I got is that they did not know, but she passed the test with flying colours. They want to work with me and the family because this is something that she can come through and lead a 'normal' life.

 

Do I believe it??? No

 

I am absolutely fuming, confused and bewildered.

 

Do I know my own daughter at all?? Of course I do, how can a test about her relaying a story from a book, playing with a spinning top and umberella be the answer as to whether she is As or not.

 

Please Please any information or advice you could give me would be really appreciated.

 

Kind Regards

 

Kerry x

[annie]

<'> <'> Oh Kerry <'> <'> ,

 

I feel and for you. I really don't know what to say apart from how can they base their diagnosis on one test .

 

Annie

xx

[jessie]

SOmetimes it's very hard to have faith in the experts and this sounds like one of those times. I think you need to explore things more even if that means asking for further advice etc.... I can't i magine how I would have reacted if I was suddenly given such a change of diagnosis. My son was diagnosed with adhd when he was 7 and this was later changed to aspergers when he was 12 but I gather that this isn't that unusual but post traumatic stress.....

 

thinking of you

jessie

[smiley]

 

I agree totally with Annie - how on earth can they base their decision on one day/test??? Just crazy, especially as she has had so many dx's from various people in the past. .

 

I'm sorry - i don't know what to suggest .

 

<'> <'> <'> <'>

[cmuir]

Hi

 

Don't have any advise really other than to say that you're the one who knows your daughter best. As you say, you've done a lot of research and it you think she has AS (as do other specialists), then SHE HAS IT and don't doubt that for a minute!

 

Specialists can and do get it wrong. Thing is if the majority and saying she has and the minority (after seeing her for a very short time) are saying she hasn't - the minority are wrong.

 

People like that can do a lot of damage. I'd go back to the specialists who first made the diagnosis and ensure that no nonsense saying otherwise is taken notice of.

 

Best wishes

 

Caroline

[Kathryn]

Charlatans!!

 

I'm not surprised at your reaction.

 

To overturn the dx is bad enough, but to dx PTSD in its place???

 

PTSD is a reaction to a traumatic life event which is clearly remembered by the individual - there is no evidence at all for birth causing PTSD.

 

If a psychologist was involved in the dx you can report them to the British Psychological Society, not merely because you disagree, but because they have reached a conclusion with no evidence whatsoever.

 

You've had three professional opinions and your own instincts all saying your daughter has AS.

 

Good to see you back, anyway,

 

K x

[Flora]

So sorry you are going this horrifically confusing time.

 

I have a friend who is a psychiatrist and he has said he has no faith in the ADOS test... it is far too prescriptive and does not take into account learned behaviour... It is a useful tool when used in conjunction with other forms of assessment but as a one off diagnostic method there are many consultants who do not think it reliable.

 

I think you have a very strong case for referral to somewhere like Elliot House (look on NAS website).... Whether your daughter has AS or not, your family are being messed around big time... meanwhile your daughter is growing up fast and precious time is being wasted.

 

Flora <'>

[elun1]

<'> <'> You know your daughter best. IMO opinion what they said is very cruel. It's hard enough to come to terms with autism diagnosis but then to have it turned upside down is even worse, I should think. Three other professionals and you (the most important of all) believe that she is on the spectrum. One test is NO basis for removing a diagnosis and replacing it with another.

Elun <'> <'> <'>

[Cat]

Looking at this from a different angle you say

 

My daughter Robyn was diagnosed AS in November 2004 aged 9 from a specialist from Alder Hey Hospital Liverpool.

 

My son was diagnosed by an ASD specialist at the Nuffield and I know for a fact if anyone decided now to change that dx without her input she would be furious. The new diagnosis is questioning the ability of a leading professional how do you think they would take this? I for one would be finding out.

 

Who decided that your daughter needed a reassessment and were you fully informed about what they were doing?

 

I would never let anyone mess with my sons dx as it took us ten years to obtain it. I would not be happy with what happend today and I would take it further.

 

Cat

[Bagpuss]

Oh Kerry, this must be a blow for you, having been through so much I don't know anything about PTSD...but can a child's birth really affect them in such a way? How can they decide this in such a short time, when all the previous evidence concluded Aspergers? Really don't know what to say, but feel for you right now <'> <'> <'>

[Clare63]

Oh kerry.... how confusing this all must be, you've been given some good advice above and I am afriad I have nothing much to add. I did some research into PTSD whilst at college studying counselling I did not come across any links to child birth, yes maybe to the Mother or Father but not to the actual child. I would get a 2nd opinion.

<'> <'> <'>

Clare x

[KateBall]

Oh my God - can't believe this. What a load of rubbish. Can't agree more with Cat - surely the specialists diagnosis takes precedence. Can't you ask for his opinion on what's been said. I would push for this. And then claim compensation from CAMHS for your PTSD at their ridiculous decision.

[bid]

Oh Kerry <'>

 

I think both Cat and Kathryn are spot on here.

 

I would be making some official complaints.

 

Good luck <'>

 

Bid

[madme]

Kathryn has made a very valid point as did the others. Do try take independent advice. Speak to the original team asap. You have a right to see her notes and can make an application for them. You may need to consult a lawyer. Is your GP on side? I hope that you can get this over turned.

[Mother in Need]

My son passed some of the things on the ADOS test as well, but fortunately the psychiatrist realised the test wasn't all. He said that it shows that he is capable of understanding some of the issues on an intellectual level, and that it shows that with time he should be able to learn to apply them consciously. This sounds more like the way it might be for your daughter. I agree with the others to get in touch with the specialist in Alderhey and hopefully you can then sit back and let him/her take up the fight! You can do without it...

[Karen A]

Hi Kerry I am really sorry that you have had this experience but want to thankyou so much for the post.We are in a similar but much more complex situation.I had delayed traumatic symptoms when Ben was under 3 years old which we recognise could well have impacted both of our boys.However we also have a Dx of DCD with Social Communication Difficulties for Ben obtained following an ADOS.Ben has a statement for the Social Communication Difficulties plus other things -but not for PTSD/Attachment disorder or whatever label his difficulties would have-if he were to get another one.

We have recently started Family Therapy and our therapist has questioned the Social Communication Difficulties Dx-some Psychotherapists have a different view of Autism as they come from a different background.We actually value the support we are getting from Camhs and we hope it may help Ben and us.However I now realise that given that Psychotherapists/Family Therapists are not qualified to Dx ASD it is important that we say to our therapist that we have a Dx for Social Communication Difficulties and do not wish to give up the package of support we have fought for.We can do this as Family Therapy/Psychotherapy is not on the Statement not even in None Educational Provision.

I had been wondering what to do -but had not come across the situation on the forum.As I say I am really thankful that you put up the post-at least I am aware that the situation has cropped up with others. <'> <'>

[Karen A]

Hi I also wanted to say that I remain here whilst the debate continues.I continue to get a huge amount of support.We use the information that helps Ben and are getting used to not knowing.As I said yesterday elsewhere on the forum some days he appears very Aspie-especially when anxious-other days noone would notice.Hence it makes a difference who sees him and when.

I just stick here and value the help. <'> <'> <'> People here do understand.Karen

[Karen A]

Hi I thought of another thing.Family therapy is hard work and stressful for all involved as is individual child therapy.We decided to try because there is a reason to try for us.However if you think your child has AS it is worth thinking very very hard about embarking on family therapy with regard to trauma-if you do not have reason to think it may help.You could find that the whole family embarkes on an extremely stressful and difficult experience for no good reason.Karen.

[Mother in Need]

We too receive family therapy, though for his oppositional defiant disorder. I value it greatly. Although it doesn't actually make him behave any better unfortunately, he is willing/able to talk about some of his problems and feelings; at home he just blows whenever I try this. This has made that I understand him better, which makes it easier to bear, but also makes that sometimes I can avoid difficult situations. My youngest is also a bit more tolerant now, though my eldest still refuses to take part and just wants me to put him in a home...

[butterfingersbimbo]

this must be awful for you all, i would be on the phone to alder hey asap..... <'>

[JenRose]

Oh how awful for you

 

This happened to us and our son, he had many many tests and 2 clinical psychs said yes to AS and then the psychiatrist decided to do the ADOS and he passed that with flying colours so no, he doesnt have AS, he has ....anxiety stemming from an "Attachement Issue".

 

I was LIVID.

 

WE went private and the specialist dx.d him with AS.

 

I couldnt let it rest and i wrote to the psychiatrist who performed the ADOS and asked why we hadnt been permitted to see the video, let alone watch and how could she base her dx on a 45 minute observation on M.

 

Last December she backed down and CAMHS have dx,d him with PDD.

 

DONT STAND FOR IT.

Go back to Alder Hey and tell them, after all they are the specialists as are you, you know your daughter better than ANYONE else.

 

Let Alder Hey deal with the person who is trying to overturn their dx, im sure you will find that they back down.

Let us know how you get on.

 

<'>

[JsMum]

Hi, how many babies are born premeture and had a traumatic time to basically keep them alive but I dont know one premeture survivor with PTSD, I would be very very upset with their suggestion as like others have said it would have to be something she would of rememebered.

 

I dont at all suspect PTSD for your daughter, with the alder hay, previous cahms and ed pscy all saying AS how can this of been allowed to be decided that she has PTSD.

 

PTSD is usually CBT and going throw the trauma with a specialist therapist are they surely expecting her to talk about the expierence of been in an incubater, and how it effected her not been able to crawl as a baby?

 

This diagnosis will leave her with absaloutly NO SUPPORT whats so ever, a counsiller wont be able to work with experiences of been a prem baby, then theres school, what about the actual issues with her socail skills what has been a prep baby got to do with following girls she admires?

 

I would complain about this assessment and if any of the equiptment wasnt working properly then they shouldnt of done the assessment at all.

 

I would ask for a second opinion, and dont go anywhere near a cahms, Nas have information on further assessment centres and once they get your daughter they wont believe what cahms have come up with this time.

 

JsMum

[Bambi]

I agree with all that has been said this is totally disgusting of them to try change the dx that the Alder Hay have dx wow these people never cease to amaze me and it was cahms that said T didnt have an ASD and yet after going for a 2nd opinion (what a fight that was!) he has a dx of AS, PDA & Sensory difficulties so how do they justify their findings a year ago? erm....simple! THEY DONT CARE!

 

Complain to the highest about what has been said to you and tell Alder Hay exactly what has happened, i cant believe this!

 

Good luck hun and let us know how u get on <'> <'>

 

Bambi x

[Noetic]

Gee... Very possible her experiences did leave her with PTSD but ###### they need to go over their books again! And they need to sort out their equipment, too!!!

[kerrybobs]

Hiya,

 

Many, many thanks for your thoughts & advice on this.

 

I have tried to get in touch with the specialist who 1st diagnosed Robyn but he has been in meetings so I am waiting for him to get back in touch.

 

I have also been in touch with the parent partnership and they are as confused as I am. They have said they will get a multi agency meeting together.

 

Im sorry my reply is short, Im full of flu and I did'nt want you to think I was being ignorant by not replying to your replies. When Im feeling a bit better I will give you more information.

 

Once again Thank you very much and I have read each and everyone of your replies and am grateful you took the time to help.

 

Kind Regards

 

Kerry xx

[Karen A]

Hi As Camhs is part of NHS rather than education you could also try PALS [Local NHS advocacy and advice].The other people who may be able to advise you are young minds-they provide a telephone advice line.Karen.

[Flora]

Hi,

 

Another comment regarding the ADOS test.... It has 4 modules... and each module should take around 45 minutes to complete..... So how they can base their conclusion on an hour of assessment is suspicious in itself.

 

Thought this information might be useful to you.

 

Flora