PDD or AS

[lsw146]

Hi,

had appointment with B's psychologist finally last week. I really pushed hard for assessment in the belief that this is the only way to get her new senior school to support her. It was a no go.

 

The pyschologist said she didn't thnink we would have any problems getting a diagnosis of AS and that psychiatry would want to put her on respiridone. I pointed out that I didn't have to give her tablets just because they said so. She just didn't think AS was the answer.

 

She reminded me that B is quite a social child and I reminded her of all the hard work we have put in as family teaching her these skills over the last 5 years.

 

She agrees that she has a funny development and will find transition overwhelming leading to a breakdown in behaviour (it is erring on the well balanced side at the moment but with major meltdowns rather than bubbling trouble)

 

well school starts in a week and all I have heard is they are going to do some questionaires to find out what she needs in school. I asked the secretary what these would be but no one has got back to me. we were also meant to be having an emergency meeting with the SENCo

 

School had a letter in May outlining the problems and possible AS and I have tried to contact them without result.

 

B is getting excited about school because she is ready for some mental stimulation. I am dreading it because I can see the sensory overload that will occur and the meltdowns!

 

So now I am wondering whether AS is a red herring and wondering why i didn't bring up PDD-NOS at my meeting. Not that I think it would have got me any further.

 

My mind is swimming. I am trying to stay calm as the new term approaches and I also go back to work (I am term time only) but I am going through the usual first kid to senior nerves ++++++. I just don't know what else to do.

Edited August 30, 2005 by lsw146

[oracle]

I am a bit confused because you say ' The pyschologist said she didn't think we would have any problems getting a diagnosis of AS and that psychiatry would want to put her on respiridone. I pointed out that I didn't have to give her tablets just because they said so. She just didn't think AS was the answer.' Was this the same psycologist that you seen last week? If so how come they are saying that you should have no problems getting a dx of AS and then not giving one? What went wrong? Are you seeing a Clinical Psycologist? I hope the answer to this question is yes because they, I am told are the only people who can really give a firm dx.

 

There are quite a few children with autism who are social. Some of them are very social, my son is one of those children and his classification is 'active but odd' not a very nice description but probably accurate because his social interaction can be very inappropriate even though we work on this all of the time. So just because your daughter is social does not rule out autism or AS.

 

PDD is, in my opinion, very much an Americanism for ASD. Everyone who has a diagnosis of ASD has a Pervasive Developmental Disorder but in America they chose to say PDD. So if they can not dx AS then I can not see them being able to dx PDD either?

 

If no dx was given what did they suggest and when will your daughter be seen again? I know that the transfer from primary to secondary school was a disaster for my son - who was finally diagnosed aged 13.

 

Carole

[TuX]

PDD is, in my opinion, very much an Americanism for ASD. Everyone who has a diagnosis of ASD has a Pervasive Developmental Disorder but in America they chose to say PDD. So if they can not dx AS then I can not see them being able to dx PDD either?

 

If no dx was given what did they suggest and when will your daughter be seen again? I know that the transfer from primary to secondary school was a disaster for my son - who was finally diagnosed aged 13.

 

Carole

I think lsw was referring to PDD-Not Otherwise Specified rather than PDD as a whole term,

 

The term Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS; also referred to as "atypical personality development," "atypical PDD," or "atypical autism") is included in DSM-IV to encompass cases where there is marked impairment of social interaction, communication, and/or stereotyped behavior patterns or interest, but when full features for autism or another explicitly defined PDD are not met.

 

It should be emphasized that this ''subthreshold'' category is thus defined implicitly, that is, no specific guidelines for diagnosis are provided. While deficits in peer relations and unusual sensitivities are typically noted, social skills are less impaired than in classical autism. The lack of definition(s) for this relatively heterogeneous group of children presents problems for research on this condition. The limited available evidence suggest that children with PDD-NOS probably come to professional attention rather later than is the case with autistic children, and that intellectual deficits are less common.

[lsw146]

I know all very confusing!!

 

Yes we are seeing a clinical psychologist same one on and off for the last five years.

 

She had had a half hour chat with B about 2 years ago and then observed her in school (unnoficially because her child happened to be at the same school). from that she can apparently tell how socially appropriate B is.

 

B has a gifted IQ and that was the original diagnosis but I always felt this masked other problems. B got a level 3 in her writing, 4 (2 marks off 5) in her maths and 5 in her science. This more than anything has made the psychologist see the problems haven't gone away.

 

I don't want her school work to go any more a stray but more than that I don't want the effort of conforming in school lead to a dreadful home life.

 

When we asked to be refferred back 2 years ago B had started pulling her hair out and scratching herself really hard, her Dad caught her saying she had bashed her leg but she was actually scarping her figner nails up and down it.

 

I am not giving up. We see her counsellor for possibly the last time today so I will be very frank!

 

As far as the PDD I know that it is part of the spectrum and was thinking of Not Otherwise Specified. I also know that it is more widely recognised in the States. I like others don't like the idea of labels but I will not be fobbed off with 'funny development' whilst B's school and home life suffers. Why should she be left floundering just because she doesn't ring all the alarm bells of the professionals?

 

When I was told we should wait and see and I refused point blank. I told her I wasn't willing to wait another year whilst B suffered. That was when she agreed to emergency meetings etc. so today I will carry my rath with me to clinic and not hope for action but demand it/

 

Hope I can get through the next 2 and half hours and still feel confident!

[lsw146]

well appointment with counsellor was very wishhy washy. She tried very hard not to tell me directly that they think we have put far too much energy into analysing everything Bethan does . we have had a copy of the letter sent to her new school though outlining her "markedly uneven profile of development", her anxiety and her difficulties in completing work where writing is involved. It also points out her high IQ and the fact that her school achievement does not seem to reflect this.

 

There main wish for B is that she starts this new school with a clean slate nad we give them a couple of weeks to watch B in action.

 

They are sending a questionaire to her last school to ask about the difficulties in recording and social skills but I don't reckon school will have anything to say because thery always denied having any problems. After all she was never overly agressive, disruptive or dramatically failing in her work!

 

But it's another step forward so i shall try to move on with it.

 

PS They said we had got this far without a diagnosis it would be a shame to label her now unless it became absolutley necessary

[lsw146]

I am full of anxiety as the new term approaches but B seems to be calm?! with a little manic thrown in for good measure.

 

Feeling down and out.

 

have I been over anxious or am I just wanting the best for my daughter?

 

I don't feel compelled to seek help for my younger daughter but B ( the eldest ) is my enigma.

 

I feel there is problem that needs help but sometimes I think I THINK too much.

 

Sorry feeling miserable tonight. Have a babysitter should be feeling great but hubby not feeling well so babysitter not much use!

[lsw146]

Had a good cry and feeling a little calmer.

[Elanor]

Hi

 

Sometimes I worry too much, and feel I'm making too much of our problems - but most of the time, I know that my judgement of my son is spot on. Trust your instincts on this - if you're worried, then there's good reason for it. I'm sure you're right to pursue a meaningful assessment of your daughter's problems. As for this 'label' business - I hope the counsellor realises that you don't want a 'label', you want a diagnosis so that everyone can properly understand your child, and so that you can demand the services she might need.

 

The thing you mention about being told that a psychiatrist would probably want to put her on risperidone, is very odd. In my experience, you have to move mountains to get them to prescribe anything! At some point, you might consider looking for a second opinion - perhaps from a child psychiatrist with a specialism in ASD?

 

Anyway, I hope you have a nice evening in - even if the other half's feeling poorly. A few of these usually help!!

 

and a <'>

 

Elanor

[oracle]

By the time David was three years old I knew that there was a problem but I did not know what it was

 

When he started Nursey life became a total nightmare. We saw psycologists, and although they said he was distressed and probably having a breakdown aged 3, they all felt that it was down to his total insecurity and his need to be with me It will get better they said - it did not.

 

He struggled his way through Primary School and every time there was a blip, or in David's case a volcanic eruption, they would wag there fingers and say Mum

 

I had an elder son and I never felt the need to push for help for Rob or seek answers to my questions, because he never needed any extra help and I had no un-answered questions. The thing was that although Rob was bright David could buy and sell him in brain power

 

When David transfered from Primary to Secondary the Nighmare became a reality and for six week we lived in Hell. Then David was involved in an accident. He was hit by a car while going to the new school that he hated so much. He was never to return. It still took them another two years to finally come up with a diagnosis of Aspergers Syndrome

 

I am not posting this to worry you but to agree that you go with your gut here. I let them put me down so many times. And I will always be left asking if only I had not given in to them so many times, would things of been different for David? I strongly believe that yes they would.

 

Give the new school a few weeks - because probably that is all it is going to take before any cracks begin to show, IF they are going to show, they may not. If they do then get on their case and keep on it. You know your daughter best.

 

<'> Carole

[lsw146]

Thanks for you support Eleanor and Carole

 

I would be even more lost without this forum.

 

2 more days to get back to it all so we shall see from there. Ijust hope I can keepit all in balance between children, home and work. Sometimes I feel so week and tired. Then I just feel down right pathetic. Ihear and see people going through much worse than I am and try to be stronger.

 

I know deep down that we have got this far and will keep going.