advice please poss asd daughter

[MARGOT10]

Hello all,I wonder if you can spare a minute for frustrated mum.Since my daughter was born she has always been abit differant.she would shake almost fit like at loud noises or visuals like puppets,people in costumes will only eat food nearly cold and the same applies for her bath.

When she started nursery she was aggressive with other children,would only play dreesing up and the dolls house and showed limited facial expressions.Her nursery teacher was the schools senco and raised concerns of autism,it was briefly looked at and was decided it was my fault and she was under stimulated.MY daughter is five and has few friends her teacher has described her as selfish and self absorbed.my daughter is rude to people example Im not talking to her her shoes are horrid,as a parent of course this is not acceptable but if you try and talk to her she goes off on a tangent and talks of something she is more interested in.She thinks the world revolves around her she will not wait for anything everything is now.she is unable to talk with you she talks at you in statements.She will still only play dressing up with friends despite having a room full of toys all on display.my daughter is also still wet at night and has to have nappies.one thing that i find very odd is if you ask her to tidy her room evrything goes where it belongs,barbies in barbie bin,dolls in doll bin,clothes folded as best a five year old can and back in draws.I have a ten year old and as every mum knows under the bed is where everything goes.She also uses alot of my phrases example no darling im not playing today,come here sweetheart if she wants to play with another child.

My daughter is being looked at but i want to know if anything sounds familair as i felt there was something wrong two years ago but took the blame and do not want to be dismissed again.My maternal instinct tells me she has some form of asd but would like some advice of another mother as sometimes trust another mum more than a doctor.I think if i heard a mother of a child living with asd say there is some traits there i wouldnt feel as neurotic as i let myself feel first time round.THANKYOU

[jools]

the best bit of advice i can give you is to trust your instincts. if you believe she is showing traits of an asd then you must stamp your foot until someone listens.

 

my son is 8 next week and i am only just learning to stamp my foot......i wish i had done it years ago instead of accepting the 'brush off' i got from so many 'professionals'

[tracey]

Hi Margot10

My daughter was alot like that as she was growing up,

but wasnt actually diagnosed untill her teens

She has got a form of asd (quite a mixture really)

I can see the lovely personality in her but it does not always come across

like that says the wrong things etc.

When temper gets the better of her its a world war.

Its hard to say whether a diagnosis is a good thing or not(I think it probobly is)

I went for years without one and now I have I think I let her get away with

more (as I think well she cant help it) not always a good idea.

T

[Zemanski]

try asking for a referal from your GP (tell him about all those quirks and tantrums you've told us) to Child and Adolescent Mental Health services for and assessment for ASD

 

takes a while (months) but it's worth it if you are worried.

 

Zemanski

[MARGOT10]

thankyou all,my daughter is under child and mental health I have said i want a diagnoises before the start of term,as she is below average in most areas of academic acheivement and the social problems iam very concerned about as i dont want her to be lonely.I dont know if i want a label but i want to be taught the way to get her to learn cos so far i dont seem to be doing to well.thankyou all

[pennyindorset]

Has your GP refered your daughter for an assement yet, you may find that if by the time she s starts at school the school will pick up on anything of concern and usually help in a referal to. I would say trust your instinct, you are a mum and have other children so will spot any differences that are of concern, don t take no for an answer.

[Zemanski]

I don't think any of us really want to label our children but for most children on the autistic spectrum a diagnosis seems essential if their needs are even going to be considered properly never mind actually met.

 

the problem with an ASD is that it isn't just another learning difficulty to be lumped in with all the others, helping a child with AS for example means a completely different approach to that used with most children. The strategies used to help a non-ASD kid to read are not necessarily going to work at all for a child on the spectrum and certainly with behaviour the strategies are worlds apart.

 

with AS and autism a label really does seem to help because it flags up a need for a different way of thinking about a child

 

Think about this example:

 

you're a teacher and that kid at the back, the one that's always fidgetting, who moves a bit strangely, is talking to his neighbour, probably about starwars - never talks about anything else as far as you can tell.

 

So you say 'be quiet, X'

 

and what does he do?

 

starts up again but whispering.

 

so you say ' X, I've asked you to be quiet, that's your last warning'

 

and the kid pipes up bold as brass ' but Miss, I am talking as quietly as I can'

 

The cheek of it! - definitely a detention there

 

Now think about how it would have panned out if you had known the kid had AS

 

Well you've asked him to be quiet and he hasn't shut up but then he explains his literal interpretation and you realise you have made a blunder by not being precise enough so you can say ' sorry x, I should have said stop talking'

 

and the kid understands and you can all get on with the lesson

 

the label isn't for the child at all, it is for those who work with the child.

 

Zemanski

[Viper]

The symptoms you have highlighted do sound ASD related but although people on this forum have considerable knowledge we are not experts, If I were you I would ask for a referal to an ASD specialist. I did this recently, I asked my GP to refer my son to Guys hospital for an assesment. From referal to assesment it took about 4 months and although we do not have a firm diagnosis we at least know we are not mad and imagining things, it has put to rest all the worry that I was a bad mother not just for me but from the school too.

 

I know what it is like to have people think you are to blame for your childs problems. Don't let these people get away with it, you know your child beter than anyone and you know what is "normal behaviour" and what is not. Stand up to these people for you sake and your daughters, you won't regret it.

 

As for labels. I have been fobbed off with that excuse for not giving me a reason for my son's behaviour and the way I look at it is, the "label" is not attached to the childs ear or tattoed on it's forhead, if your child grows up and chooses not to use the "label" it doesn't have to but it helps to get the problems taken seriously by school's and other authorities.

 

Viper.

Edited July 30, 2005 by Viper

[MARGOT10]

Please dont anybody think I was being rude by saying about labels.I have had one health proffessional say we dont like to give labels and it scared me abit cos i want a name for what she has so i can educate myself on how to teach her.She has had a three hour obsrvation on school which was not positive where my daughters peer relationships are concerned,she had a play session with a social worker/case worker he said the same as me that he could not get her to talk to him outside of what she was interested in.I did ask if he the same as me and he said she definatly has issues.The lady who gave the teacher and pupil example that is my daughter to a t.My main worry is there seems alot of mums who have to fight to be proved right about their concerns for their child but while this is happening the child is left isolated.Thankyou very much all of you for your help any further advice or words of wisdom would be appreciated iam abit scared for her at the moment.

[oracle]

My son was under the child and adolecence health team BUT not the team who had the expertise in ASD - and that made a HUGE difference.

 

If I were you I would find out who does have the expertise in your area and then ask to be seen by them. It's your right. Yes many of us here did have to fight to find out what the probelms were with our kids, but at least here you will be given sign posts at the very least as to what you can do next.

 

Unless the people who are assessing your daughter have expertise in ASD then you are all wasting your time. This is not to say your daughter has AS but to rule it out then she would need to be seen by a professional who could actually say one way or the other.

 

I was fobbed off for 10 years with my middle son and I carried the blame for most of those ten years. He is however casical AS - it was the so called experts who were wrong and not I.

 

Do you have a support group who could help you? It sometimes helps.

 

Carole

[annie]

Hi Margot 10,

 

I don't think that you are being rude about labelling. We were told by one doctor that he didn't want to give our son a label. Once we did get the label though, that was when we started getting help.

 

I would start writing notes of examples of your daughter's behaviours etc. At least then when you see doctors or anybody else. it's easier to refer to them, rather than try and think of things. I know my mind used to got totally blank at appointments.

 

Annie

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[Viper]

I don't think you are being rude about labels. It is the professionals that are rude and ignorant about it. They seem to think we all want these labels for our kids out of some warped kind of self justification. Like we want to stick our fingers up at them and say I told you so.

 

We need to know what is wrong with our kids so we can help them, we don't want a label for them it is just a nessesary evil in order to get anywhere in our fight to provide the best for our kids.

 

There are mixed feelings about labels and most parents are made to feel they are wrong for wanting one.

 

Off my soap box now. I get angry at the way us parents are treated by so called proffesionals. I have been fighting for so long now.

 

Viper.

[MARGOT10]

cheers viper and all,it sounds like iam doing all i can.Viper I may be wrong but i do want to stick my fingers up at them I know if its not asd its something,iam getting tired already.I will give you the situation that scared me my daughters school had a teddy bears picnic i attended there was bouncy castle,face painting ect.Not once in the three hours did she speak to a friend or make contact.We were waiting for face painting and there were 2 lines the other line only had one little girl in it I suggested we join that line my daughter said no she did not like how the girl looked and she would not move.As we were waiting a lady came and asked if she could guess how many sweets were in the bag my daughter took the bag off the lady and started counting them.IF i was not concerned before i was when I got home normally a child will grab a friend to jump with or do an activity with she said nothing to nobody,i just feel that before she was three the proffessionals have tagged me as a neurotic mum.again thankyou for time and advice

[baddad]

I have had one health proffessional say we dont like to give labels

Hi Margot -

For some reason the above is a fairly common 'professional' response. As THEY know that the 'label' is the only real method of determining and accessing support services, it's tantamount to saying 'we'd rather sit on the fence and do ###### all, 'cos we're already oversubscribed and under resourced anyway'... Ignore them, and go with your instincts until they give you some sort of real response... if they don't think the ASD label applies, what DOES? How can you help your daughter if you don't know what her needs are, because the professionals don't want to help to define them?

Whether your daughter is ASD or not is impossible for anyone here to say; but your well articulated concerns are enough to suggest that something is going on that needs to be looked into, and it's their job/responsibility to help you discover what exactly it is.

Go get 'em!

L&P

BD