aspergers/mutism high function autism diagnosis, yet psychologist's appoint today express doctor can back track on diagnosis, now told its anxiety

[vondahue]

HI,

I posted a little while ago feeling relieved i had been listened to as the doctor i saw expressed that he felt my daughter was aspergers/ selective mute and high functioning autism,

i knew from 18 months something was a miss with her and battle through with all her difficult behavoiur from not using the loo til she was 5 half, that even family she would treat like a stranger and blank them and ignor them to the mutism and the inability for her to grasp instrutions that were of any lengh, i put structure into her life explained every step of every day and well pretty much done everything i thought would help, but its not easy being a lone parent to a child with these difficulties where her dad is no support and cant see what she is like, as well has having a younger son, so i thought at last we would get some support hoping they'd give me ways of really gettin ontop of it all, as everyday there is a struggle of one thing or another, i cant go out for days out cant see friends cant even read my post with out her right there in my face constantly on at me or wanting needing or feeling one pain or discomfort , i think you'll al understand what i'm saying about behavoiur so trying not to go into that side to much,

so today we see the psychologist, daughter has tummy ache head ache and wants to go to her room which was expected, so i sit and talk to this woman, explain how i dont feel i can breath, that dispite trying everything nothing works nothing is good enough she always has something wrong or will not join in or go and play, she shows her unhappiness so much that even coffee out with a friend while she is with me is a no go, anyway this woman now says that the doctor can say one thing then back track, so is she now saying she hasnt any of these conditions???? so i talk some more pointing out the triats she has that led me to believe she had aspergers and the pead the first time we tried for a diagnosis, then she explains that although daughter has some triats she has lots that are just common with anxiety, so is she just an anxious child! well ift felt like she was saying in laymen terms as my daughter is only happy when no one is around and its just us, and her behaviour is bad when people around that it is her feeling that because i'm the only constances in her life that she controls me and what i do that she dont want me to talk or what ever for her fear she wont get anything from me, so my 7 yr old is controling my life cos she wants me to herself????? so can an 18 month decide to behave like this? can at that age through til 3-4 yr old sit in play school full of fun and toys and children decided nope i'm gonna sit at my mum's feet the whole time glare at anyone who looks at me because i want mum to myself???

she explained if i simply give her instructions that state i would like her to try to say hello even if she feels unhappy, and then reward her for it with praise that this will improve things with her communication, its that bad that her aunt and uncle were in town and unlike most children will be excited or happy or smile and chat stating any info they want to share she just put her head down and ignored them, its not like they are strangers but may as well had been, so how does that effect her and me , and the anxiety well her dad is very bad thought he had social phobia, but looking at asperger he same, after a 6 yr relationship he was still unable to talk to me openly i had to ask things to try encourage him to talk, he never walked in said hi love how was your day, it was silence til i said how was work did you see your mum today , actually tested it one night i didnt ask anything, so he said nothing and was silence the whole eve! guess i dont understand it being that bad with your own family from a child when children can be so forward,jolly and out going.

 

so now i have no idea whats going on why she is like this is it just me? her nan has her and struggles saying she wont leave her to get on do dinner she has to play with her although its for her as daughter cant role play, but nanny allows and compensates, as she dont want to upset her or see her upset, if daughter was to drop something it's panic stations quick dont worry nanny got it dont worry, and her dad well can i say part time, after 4 hours brought her home said he was exhausted because of her behaviour, see he works and needs a lay in, but he can not cope having her at his on his own so has her at his mum's as they all help.

 

I'm just left confused, is she isnt she, do al psychologist blame home life up bringing even if the child is just a difficult child and hard to parent through no ones fault?

 

she's coming back in a few weeks see how school and new teacher is working out. while in the mean time i have to explain what i expect as in saying hello, and reward her for doing it, that as i have just realised having a boyfriend makes her really bad and become single through the stress she puts me through its been said that a quiet life just me kids is prob best and although i'd like to move to be near a friend who is preg with twins and needs some support but because way daughter is i should wait til she would naturally be changing school so as not to make her worse through feeling she is hard done by as the friends left behind would still be together, which is a 2 yr wait i live in a small town no shops unless drive hour away, and they have a first school til yr 4 then middle school til yr 8 or 9 then college, so i not only been told doc got it wrong but i'm not allowed a life if i want her to improve cos its all about her wanting me to herself!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

gob smacked lost confused! anyone shedding any light on this would be great its this psychologist? do they all blame home or parenting skills and not that they have a disorder????

 

[Paula]

<'> <'>

 

 

Getting a diagnosis .getting the powers that be to listen and understand is a nightmare and a struggle most of us have been through........and yea sometimes they do try to say its homelife and upbringing and bad parenting.MY son is now 15 but when he was 3ish he refused to talk would just make geastures and nod ect and when i used to tell the drs this there answer was that i had a broad yorkshire acent and thats why my son wouldnt speak because he didnt know what i was saying and that is the utter unbeleivable truth.............it didnt matter how many times i said but my son does this or that i think hes got aspergers they just brushed my worries aside..............Its a long drawn out saga and i wont bore you with any of it.

 

 

 

This is kinda totally unreleated but relevent in many ways.

 

 

My sister is going through a very similar thing to you and youre daughter.

 

My sister adopted a 18 month year old little girl who is now 6 and she behaves very similar to youre little girl.She is extreamly clingly for better want of a word............wont let my sister do anything ,is extreamly demanding,refuses to speak to other people,is constantly in my sisters face,demands her attention all the time to the point she cant do anything and then screams and tantrums if she doesnt get it...........its a lot more complicated than ive put but it makes my sisters life hell.Shes involved with chams and social services and drs and physcologists and they say its attachement issues her daughers got and seveare anxiety...............and yet they can offer no advice on how to deal with it or make things easier.......My sisters little girl also appears to want her mum all to herself you can actually see her behaviour change when someone else is around and if you try to have a conversation she "plays" up even more so that all my sisters attention haas to be on her and shes to give up trying to do what she wants.

 

 

I dont realy know what to suggest ...............maybe someone else will...............

 

I dont envy you it is so so hard and stressfull trying to get people to listen and offer help and its something you can do without when youre already under a lot of stress.

 

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[Sally44]

From your post, if I understand right, your GP thought it might be an ASD and referred you to the paediatrician who thinks it is anxiety?

If you are not happy with that and feel it is an ASD, then I would suggest you go back to your doctor and ask for a multi disciplinary team assessment by professionals who are experienced in diagnosing ASDs. Does this paediatrician have experience of diagnosing ASDs? Has your daughter been seen by a Speech and Language Therapist who has experience of ASDs and have all aspects of her speech and language and social communication and play skills been assessed. If not ask for it as part of the multi disciplinary team assessment.

If your GP tells you that where you have been referred is the only way, then get in touch with the National Autistic Society as they should be able to give you some local information about other ways that you might be able to get her assessed.

The only way that they can rule in or out an ASD is through observations and assessments. And you really need her to be seen by professionals who have experience in ASDs.

[chris54]

I'm trying my hardest to think what route my son's diagnosis took.

 

I think it was a referral by his school or some one to do with the school to the multi disciplinary team that got the ball rolling. It did take over a year from start to finish.

We had no anticipation that it would lead to a diagnosis of ASD.

This was in our old LA area, not were we live now.

We have only ever seen a pediatrician once and this was in relation to sons statement, who basically asked if we were happy with what was in the reports she had from the clinical psychologist. And apart from doing a few physical checks that was it. Her report just mirrored the other reports.

But things are done differently in different areas.

[Karen A]

Hi.

I was wondering how your daughter gets on at school and during other activities outside home.If school have noticed difficulties with social interaction,social communication or with aspects of learning either in class or during unstructured time then the SENCO may support you in requesting further assessment.

If the psychologist is not employed within CAMHS then another option would be to ask your GP to refer your daughter to CAMHS.A CAMHS psychiatrist should be able to conduct assessments to decide whether the current difficulties are related to anxiety or ASD.Even if the difficulties are emotional or psychological I think it would be reasonable to expect an assessment.I think a CAMHS psychiatrist would be the professional to diagnoses anxiety,depression or selective mutism and suggest intervention.

 

If you are very keen to push for an assessment for ASD then a request via GP for multi-disciplinary assessment as suggested by Sally44 might be the best option.However the ideas I suggest might be worth exploring too especially if the GP is not supportive.Karen.

[NobbyNobbs]

My sister is going through a very similar thing to you and youre daughter.

 

My sister adopted a 18 month year old little girl who is now 6 and she behaves very similar to youre little girl.She is extreamly clingly for better want of a word............wont let my sister do anything ,is extreamly demanding,refuses to speak to other people,is constantly in my sisters face,demands her attention all the time to the point she cant do anything and then screams and tantrums if she doesnt get it...........its a lot more complicated than ive put but it makes my sisters life hell.Shes involved with chams and social services and drs and physcologists and they say its attachement issues her daughers got and seveare anxiety...............and yet they can offer no advice on how to deal with it or make things easier

thats because there is very little you can do to resolve that kind of attachment disorder except give it time. that little girl will (probably) have been attached to her mother, then at least one set of foster parents before being adopted by your sister, and thats a lot of change and 'rejection' for a baby to deal with. attachment disorder and ASD exhibit the same symptoms because they make the 'sufferer' feel the same way, only the root of the cause is different.

 

on the OP. a non-specialist doctor cannot diagnose an ASD on their own, was it a GP, or paediatrician? and i'm a bit confused as to the diagnosis they gave as far as i am aware you can't have both AS and HFA, because they are both part of the same thing. as the others have said, asking for a full assessment is the only way to know, but in the meantime try to follow the suggestions by the psycholgist, as they will help both an ASD child and an NT one.

 

as to your questions about the control your daughter has, yes, a child can choose to ignore all peers for their own percieved benefit. i've work with some extremely strong willed NT kids and you would not believe the things that they will do to keep control. i had one child sit on the stairs for 5 hours and not move an inch just so that she didn't have to go play with her sister.

[wasuup]

For advice on the Selective Mutism have a look at SMIRA's website (Selective Mutism UK charity)

 

Make an appointment yourself for your daughter to see a speech and language therapist you can do this via your local PCT website. Ask if someone who has been trained in Selective Mutim and ASD's can see your daughter and asess her.

Speech therapists work on communication and interaction not just speech sound type difficulties.

Edited August 22, 2009 by wasuup

[chris54]

and i'm a bit confused as to the diagnosis they gave as far as i am aware you can't have both AS and HFA, because they are both part of the same thing.

 

On my sons diagnosis it says "HFA presenting as AS"

 

. Ask if someone who has been trained in Selective Mutim and ASD's can see your daughter and asess her.

Where we lived at the time there was ONE properly qualified speech therapist and a lot of vacancies.

[wasuup]

Well they need to get their act together Chris 2011 is The Year of Speech, Language and Communication.

[jan66]

HI,

I posted a little while ago feeling relieved i had been listened to as the doctor i saw expressed that he felt my daughter was aspergers/ selective mute and high functioning autism,

i knew from 18 months something was a miss with her and battle through with all her difficult behavoiur from not using the loo til she was 5 half, that even family she would treat like a stranger and blank them and ignor them to the mutism and the inability for her to grasp instrutions that were of any lengh, i put structure into her life explained every step of every day and well pretty much done everything i thought would help, but its not easy being a lone parent to a child with these difficulties where her dad is no support and cant see what she is like, as well has having a younger son, so i thought at last we would get some support hoping they'd give me ways of really gettin ontop of it all, as everyday there is a struggle of one thing or another, i cant go out for days out cant see friends cant even read my post with out her right there in my face constantly on at me or wanting needing or feeling one pain or discomfort , i think you'll al understand what i'm saying about behavoiur so trying not to go into that side to much,

so today we see the psychologist, daughter has tummy ache head ache and wants to go to her room which was expected, so i sit and talk to this woman, explain how i dont feel i can breath, that dispite trying everything nothing works nothing is good enough she always has something wrong or will not join in or go and play, she shows her unhappiness so much that even coffee out with a friend while she is with me is a no go, anyway this woman now says that the doctor can say one thing then back track, so is she now saying she hasnt any of these conditions???? so i talk some more pointing out the triats she has that led me to believe she had aspergers and the pead the first time we tried for a diagnosis, then she explains that although daughter has some triats she has lots that are just common with anxiety, so is she just an anxious child! well ift felt like she was saying in laymen terms as my daughter is only happy when no one is around and its just us, and her behaviour is bad when people around that it is her feeling that because i'm the only constances in her life that she controls me and what i do that she dont want me to talk or what ever for her fear she wont get anything from me, so my 7 yr old is controling my life cos she wants me to herself????? so can an 18 month decide to behave like this? can at that age through til 3-4 yr old sit in play school full of fun and toys and children decided nope i'm gonna sit at my mum's feet the whole time glare at anyone who looks at me because i want mum to myself???

she explained if i simply give her instructions that state i would like her to try to say hello even if she feels unhappy, and then reward her for it with praise that this will improve things with her communication, its that bad that her aunt and uncle were in town and unlike most children will be excited or happy or smile and chat stating any info they want to share she just put her head down and ignored them, its not like they are strangers but may as well had been, so how does that effect her and me , and the anxiety well her dad is very bad thought he had social phobia, but looking at asperger he same, after a 6 yr relationship he was still unable to talk to me openly i had to ask things to try encourage him to talk, he never walked in said hi love how was your day, it was silence til i said how was work did you see your mum today , actually tested it one night i didnt ask anything, so he said nothing and was silence the whole eve! guess i dont understand it being that bad with your own family from a child when children can be so forward,jolly and out going.

 

so now i have no idea whats going on why she is like this is it just me? her nan has her and struggles saying she wont leave her to get on do dinner she has to play with her although its for her as daughter cant role play, but nanny allows and compensates, as she dont want to upset her or see her upset, if daughter was to drop something it's panic stations quick dont worry nanny got it dont worry, and her dad well can i say part time, after 4 hours brought her home said he was exhausted because of her behaviour, see he works and needs a lay in, but he can not cope having her at his on his own so has her at his mum's as they all help.

 

I'm just left confused, is she isnt she, do al psychologist blame home life up bringing even if the child is just a difficult child and hard to parent through no ones fault?

 

she's coming back in a few weeks see how school and new teacher is working out. while in the mean time i have to explain what i expect as in saying hello, and reward her for doing it, that as i have just realised having a boyfriend makes her really bad and become single through the stress she puts me through its been said that a quiet life just me kids is prob best and although i'd like to move to be near a friend who is preg with twins and needs some support but because way daughter is i should wait til she would naturally be changing school so as not to make her worse through feeling she is hard done by as the friends left behind would still be together, which is a 2 yr wait i live in a small town no shops unless drive hour away, and they have a first school til yr 4 then middle school til yr 8 or 9 then college, so i not only been told doc got it wrong but i'm not allowed a life if i want her to improve cos its all about her wanting me to herself!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

gob smacked lost confused! anyone shedding any light on this would be great its this psychologist? do they all blame home or parenting skills and not that they have a disorder????

 

[jan66]

hello, my name is jan. i have 2 sons one aged 21, and another, my special one he is 18yrs. Youre post caught my eye, and i can feel youre frustration. I have always known there was something a little different with my youngest child, from the age of 2. He was always very hyperactive as a child , and had massive sleeping issues, he was actually admitted to hospital for 3 nights , and given strong medication it was to help him get in to a sleeping pattern lol, didnt work.as he got older he improved, he was always a very selfish child and was always by my side he wouldnt mix very well at all ,when he started school he walked round at lunchtime with the dinnerladies instead of playing with the kids. When he was around 9 yrs old he was tested for adhd, but we were told no! it wasnt that, so we carried on i must also say he is acceptionally bright, hence why maybe adhd was ruled out. Then at the age of 11 my 16yr marriage ended, it affected my youngest child more than the eldest boy,he became very very angry, would throw massive tantrums smash things . it was really heartbreaking to watch, he hurt himself so bad one day that we ended up in casualty, he had just missed puncturing his artery, so it took this to happen, and he was referred to a child physcologist, all they did was video him talking and prescribed anti depressants !!!!! and was told he was acting this way due to my marriage ending! i would not give him the anti depressants for obvious reasons hes only 11. Like yourself my sons father is useless, and has never been a part of their lives since we broke up , thats 9 yrs ago . High school was difficult for my yougest , not in the learning sense as he is very intelligent, but i noticed more the lack of friends in and out of school, mainly out of school, he chooses to sit in his room alone for weeks on end and had no real social life.He absolutely loves music though, so i boughtand him a guitar first one was electric, he taught himself to play , never had one lesson, then i bought him an acoustic guitar, again no lesson, but wow can he play hes amazing, people carnt beleive hes never had a lesson but truly he hasnt being a single mum it was a little out of reach to afford that. He began college last september and is studying music, it is the only time you see him smile, forgot to add that, he never smiled much all of the years he was growing up.,he was very moody and sulky.Now he is 18yrs and 5 monts ago asked me why he is different to his peers? he also told me that hes always felt different to others it breaks my heart as a mum , but that was the real turning point for me, he started to have issues at college, wasnt joining in with the others at lunchtime ,would rather sit alone or with the office staff, here it was again! He was also having major issues with the travel to and from college.The college he attends is 30 miles away, he has to get on and off 4 buses to get there and he just carnt cope with all that, he has to have everything planned, is very routine even to what he wears on a daily basis god help us when it all goes wrong as it often does!! Sonny wanted to see a doctor re theese issues, and it was then we were told that he thinks sonny is autistic/ aspergers. I was really upset, but also elated, at last, we know now , all theese years of being driven to the edge! we are waiting to see a physcologist now and just hope it all goes ok.At least now i know theres a reason for his odd behaviour and that hes not a naughty spoilt child that people think he is. My advice to you is keep fighting get a second opinion i think you know as a mum when somethings not right, it just takes that one person to sit and listen to you.I hope you find that one person and hope it dosent take as long as it took me,take care , chin up .

[vondahue]

hi and thanks for you replies, the one who diagnosed her was a specialist , the psychologist was from camhs,

 

my daughter was a prem baby, 10 wks prem by emergancy c section, she did well was home weighing 5lb after 7 weeks,

home life til she was 4 was me dad and her, al pretty normal stable etc, but boy did we struggle then the relationship ended which was ok we were still friendly, i did meet someone else get married and have my son, the whole time was a living hell with her, thought with time she would ajust but no she got worse , i lost my husband a yr ago and she didnt care, looked at my son said riley your dad's dead, lucky he was only 7 months, she did no grieving at all, no emotion but at that time those few weeks before she was his best friend she would follow him about chat all time, i just dont understand , we stayed in hosp for a week about her not using the loo, they was oh give her a sticker she will, come off it i been doing everything possible to get her to use it, my husband said its just her controlling things, but aspergers can mean that you dont toilet train so well, so who is right? was the diagnosis, which i think its aspergers or hfa, he wasnt to clear thought either, with selective mutism, (which since this her dad said think i had that)

when my son was about 9 months my daughters dad popped in when dropping her home, my son is highly socialble and didnt care he was strange and was smiling away, and her dad looked at me and said, she'd never done that .

 

trouble is she has heard me talking last few days to her nan explaining this psychologist thinks just control with underlyin anxiety issue, and because i'd gotten to that point where i thought right just me kids home do nothing she dont like she be happy, and her nan said i shouldnt stop seeing friends etc, whole big chat, and last few days only one episode, rest she been playing in her room with toys that been gathering dust as she usually sits and mopes only ever draws a picture of her or girls, so has she realised she been rumbled and gone on to behave like most kids only proving she can be ok, or she just staying out my way? it is so hard, guess it will become more obvoius as she gets older,