We went to see the camhs team yesterday and need to ask a few questions please

[mylittlemonster]

My little girl is almost 6, adopted, birth mum drank with her. Shes a lovely loving little girl, she struggles with school work and is behind probably about a year behind at the minute so not mega amounts. She has poor concentration, her teacher said some days better than others but they think it may improve as she matures, shes fidgety and they also say shes stubborn. If she doesnt want to do something she simply wont do it.

 

She has a problem with clothes, they bug her and she will only wear a limited selection of clothes. They have to be just right, her bobble in her hair has to touch her head right, her socks cant have bumps in, her shoes must be very tight. She cries and kicks off if something isnt right.

 

She plays with other children but doesnt have close friends, she prefers playing rough games like football anything she can jump or run about. Sitting and playing quietly is most definately not her thing lol, she doesnt get invited out for tea or anything like that.

 

Shes rough with our pet dog as well, hugs him but hurts him every single day

 

She argues a lot, is controlling, very bossy and when she wants something she wants it right away. She asks questions over and over even when youve already answered such as yesterday she wanted her scooter on the trampoline, she asked me and her dad jumped in and said no, she continued to ask me and i said your dad has already told you, she said yes but i wasnt asking him i was asking you so i said no and within half an hour she had asked us another two times.

 

Our routine is always the same, everyday so she knows what to expect, if we did say plan to do something and it changed for example it snowed a few weeks ago and we had arranged to go swimming but changed our mind with the weather and she didnt get upset but she asked over and over and over all day about swimming even when we had told her we werent going

 

Yesterday at camhs, they asked her lots of questions, she sat really nicely and answered them all and they spent some time on their own with her, at the end she said she needed investigating more and they would put together a plan of action, they said she has poor eye contact, is very fidgety and doesnt recognise or express emotion, she cant differentiate between anger and being happy or something like that she was saying. I was actually quite shocked by how much she had picked up in a short time. I never realised she had poor eye contact or that she wasnt recognising emotion.

 

So i was then wondering whether there was more to it than just my feelings of her having problems with clothes and being hyper or could the clothes problem also cause the poor eye contact, failure to recognise and express emotion?

 

Ive always said i feel there is something different with her but never felt she could have anything like aspergers or autism because she seems ok. They havent said aspergers its just the eye contact and emotion thing that made me wonder

[lindy2017]

My little girl is almost 6, adopted, birth mum drank with her. Shes a lovely loving little girl, she struggles with school work and is behind probably about a year behind at the minute so not mega amounts. She has poor concentration, her teacher said some days better than others but they think it may improve as she matures, shes fidgety and they also say shes stubborn. If she doesnt want to do something she simply wont do it.

 

She has a problem with clothes, they bug her and she will only wear a limited selection of clothes. They have to be just right, her bobble in her hair has to touch her head right, her socks cant have bumps in, her shoes must be very tight. She cries and kicks off if something isnt right.

 

She plays with other children but doesnt have close friends, she prefers playing rough games like football anything she can jump or run about. Sitting and playing quietly is most definately not her thing lol, she doesnt get invited out for tea or anything like that.

 

Shes rough with our pet dog as well, hugs him but hurts him every single day

 

She argues a lot, is controlling, very bossy and when she wants something she wants it right away. She asks questions over and over even when youve already answered such as yesterday she wanted her scooter on the trampoline, she asked me and her dad jumped in and said no, she continued to ask me and i said your dad has already told you, she said yes but i wasnt asking him i was asking you so i said no and within half an hour she had asked us another two times.

 

Our routine is always the same, everyday so she knows what to expect, if we did say plan to do something and it changed for example it snowed a few weeks ago and we had arranged to go swimming but changed our mind with the weather and she didnt get upset but she asked over and over and over all day about swimming even when we had told her we werent going

 

Yesterday at camhs, they asked her lots of questions, she sat really nicely and answered them all and they spent some time on their own with her, at the end she said she needed investigating more and they would put together a plan of action, they said she has poor eye contact, is very fidgety and doesnt recognise or express emotion, she cant differentiate between anger and being happy or something like that she was saying. I was actually quite shocked by how much she had picked up in a short time. I never realised she had poor eye contact or that she wasnt recognising emotion.

 

So i was then wondering whether there was more to it than just my feelings of her having problems with clothes and being hyper or could the clothes problem also cause the poor eye contact, failure to recognise and express emotion?

 

Ive always said i feel there is something different with her but never felt she could have anything like aspergers or autism because she seems ok. They havent said aspergers its just the eye contact and emotion thing that made me wonder

Hi, What you just said sounds exactly like my grand daughter shes 5 it was like reading about her......my youngest hes 13 is dx with aspergers and my older 3 have traits .....i have alwyas said she has something ....she had delayed speech which is more inline with autism ....but fidgets all the time cant sit still climbs gets into danger doesnt see it......she is getting extra help at school ...she screams at times when out shopping i think its the noise and lights....i dont see much of her as they live in scotland now....but her mum was jsut the same runs in our family ......

[chris54]

A lot of what you said could point towards ASD but as I understand it they could also be the result of FASD. As the CAMHS team have said that move investigation is needed they are probably keeping an open mind at this stage (As it should be).

 

 

FASD, Fetal Alcohol Spectrum Disorder.

Edited April 18, 2012 by chris54

[Sally44]

And I presume it could be combination of things.

 

The other things you mention are sensory issues. This means her perception and reception of sensory information is not as it should be. If she has hypo [under processing], that could explain the need to fidgit and run around because that is her way of getting feedback from her body. The same with hugs that hurt. She cannot guage how hard she is hugging because she cannot 'feel' its response on her body to the same level as we would. And the senses can be over or under [hyper or hypo], and it sounds like she does have that. Lack of sensation processing in some areas [hugging, needing to run etc showing a hypo [under responsive] proprioceptive and maybe vestibular senses to deep pressure, and she is over [hyper] sensitive with the lighter touch of hair bobbles, socks, combing or washing hair etc.

 

Not understanding or being able to process emotion is something that can take some years to actually recognise. Afterall, you assume she can, and she is just as she is and knows no difference, so she cannot say "I don't feel x, y and z" because it is how she has always been.

 

And there is also a difference between watching TV and being able to identify the emotion in others [which some can do], and then being able to process and understand your own emotions. Again, this can be partly down to sensory processing being out of time. You get information from what you process, and if that processing is delayed or not integrated then it is hard to know what you are feeling and sensations have a close relation to emotions.

[JeanneA]

hi mylittlemonster, I agree with Chris CAMHS are keeping an open mind which they should because your child needs the right diagnosis, I think CAMHS are definitely being thorough which is good to hear. Do keep us updated with what happens, I wish you well and that your child gets the right diagnosis and therefore can go on to receive the help and support that is needed.

[chris54]

The problem you have is that although the symptoms may be the same or similar, the couses are different and may need different approaches when it come to treatments, management etc.

Edited April 18, 2012 by chris54

[mylittlemonster]

Thank you all for your replies, yes Sally your so right i do presume she can recognise and respond to emotion, she knows to laugh when we laugh and she laughs at things she finds funny, she doesnt tend to feel sorry for people so much as she does animals, if she sees someone ill or dying on a programme it doesnt bother her yet if she sees the same in an animal she will cry, she doesnt seem to see that people suffer, she never says she feels sorry for someone, she only ever says she feels sorry for animals. When shes in trouble she wont look at me which is typical in any child i think and if i ask her to look at me she smiles the whole time. Chris FASD is something ive looked in to and spoke to someone from the support group, i even sent photos and she said she felt my little one showed facial features of the condition, to be fair there are so many things she fits the bill of but im no expert so will leave all that to camhs.

[chris54]

Like the rest of us you will probably become an expert.

Iv been to Autism training (For work) and half the time I know more that them teaching us.

 

Some years ago I looked after a 4yo boy for a short time that had FASD, He was much more severely affected than your girl. He was quadriplegic with very little communication ability. Puts things into prospective.

Edited April 19, 2012 by chris54

[woodstock246]

Don't mean to sound negative, but will a lable for the behaviours make them any different? Many of them sound like my AS son. I have had teachers and others encouraging me to get a diagnosis but he is does very well at school so I really don't see the benefit of giving him a lable that means others make opinions about him before they've met him. He is a quirky soul and I love him for it. Others can take him for who he is, or not. The good teachers have and will get the best out of him, those who don't 'get' him will not magically become able to teach him better because they are told he has AS. I am not going to have any more success in making him believe that basic hygiene matters (don't ask!), that he can look at and answer the neighbours when they speak to him, etc, etc, because he has a lable.

(Though perhaps if I'm entirely honest I sometimes wish he had a tee-shirt telling the world,so people don't assume he's just rude).

 

The physical, fidgety side though sounds more like my (NT) daughter. She is not still until she has run, swum, jumped, cycled off more energy than I have in a week!

 

I guess what I'm trying to say is that IMHO behaviours that are not typical of the majority don't always need to be viewed as a problem if they are not really causing one.

 

As for the questions again and again, after explaining clearly why or what and making sure it is understood, I have always answered that " Last time you asked the answer was ......Every time you ask (?timescale) the answer will be ............." It does not make it any less frustrating but at least it stops me having to explain everything every time the question comes.

 

Just about to hit post, then thought, and I am probably creating a peculiar theory! But I kind of get the caring more about animals than people; Children that like animals 'like dogs' and or 'like cats' or whatever, but even as adults we rarely 'like people'. So a random person with no emotional attachment being ill/dead is not as sad as a random animal. Sorry, that made sense in my head, hope you understand what I'm getting at!

[Sally44]

I think that seeking a diagnosis or label really depends on the extent of the difficulties of the child and what is needed to support them.

 

I know there are lots of undiagnosed ASD children out there in mainstream schools doing okay or even very well.

 

The problem comes when your child is not coping or not making progress and you cannot get anyone to do anything because you don't have that label. And although parents may be told [as I was] that your child will get whatever support the child needs without a label or diagnosis, that is a big fat lie. None of us parents would have needed to go through the battle we have done, to get the diagnosis if our child's needs were being so brilliantly met.

 

I really could have spent the last countless number of years, doing things I liked, or the family liked, instead of having to become some kind of SEN encyclopedia and lawyer rolled into one.

 

And the SEN process itself ie. getting a Statement, states that each and every need must be identified. How can it be identified without a label or diagnosis? It can't. You have to have it on paper before you can find out what is needed to meet that need. And as painstaking as that process is - that is the only option you have.

 

I remember, back when my son was first being seen by professionals, that I did not want him to get a diagnosis. I felt guilty attending appointments and answering questions about him, knowing that they would make lifelong decisions about him based on my answers. And IF he had been coping in school, I probably would not have gone through the process.

 

Although I had concerns, these were initially ignored. Then when my son started school, it was them that raised concerns and referred him to the SALT and EP. And then began an 18 month process of being referred on and on to more and more professionals until we got our diagnosis. Or rather a combination of diagnoses.

 

We did finally achieve what was needed. And thankfully our son is now back in school and more importantly in a school that he is happy to attend, and where he is making progress and his mental health is improving.

 

A label for the behaviours won't make them different. But a diagnosis of FASD may mean the autism advisory teacher does not get involved because of the label given to the difficulties - whereas labelling the difficulties under the umbrella of an ASD possibly due to alcohol abuse of the mother, may allow this child access to professionals that maybe able to make suggestions to school and home on how she could be supported and may allow this child access to professional therapy that maybe none existent for children with FASD.

[chris54]

That a good point Sally, I see where you coming from.

[mylittlemonster]

Don't mean to sound negative, but will a lable for the behaviours make them any different? Many of them sound like my AS son. I have had teachers and others encouraging me to get a diagnosis but he is does very well at school so I really don't see the benefit of giving him a lable that means others make opinions about him before they've met him. He is a quirky soul and I love him for it. Others can take him for who he is, or not. The good teachers have and will get the best out of him, those who don't 'get' him will not magically become able to teach him better because they are told he has AS. I am not going to have any more success in making him believe that basic hygiene matters (don't ask!), that he can look at and answer the neighbours when they speak to him, etc, etc, because he has a lable.

(Though perhaps if I'm entirely honest I sometimes wish he had a tee-shirt telling the world,so people don't assume he's just rude).

 

The physical, fidgety side though sounds more like my (NT) daughter. She is not still until she has run, swum, jumped, cycled off more energy than I have in a week!

 

I guess what I'm trying to say is that IMHO behaviours that are not typical of the majority don't always need to be viewed as a problem if they are not really causing one.

 

As for the questions again and again, after explaining clearly why or what and making sure it is understood, I have always answered that " Last time you asked the answer was ......Every time you ask (?timescale) the answer will be ............." It does not make it any less frustrating but at least it stops me having to explain everything every time the question comes.

 

Just about to hit post, then thought, and I am probably creating a peculiar theory! But I kind of get the caring more about animals than people; Children that like animals 'like dogs' and or 'like cats' or whatever, but even as adults we rarely 'like people'. So a random person with no emotional attachment being ill/dead is not as sad as a random animal. Sorry, that made sense in my head, hope you understand what I'm getting at!

 

what if it is causing a problem as in my daughters case? Obviously in a post i type on here its not the same as living with her

 

She gets in trouble in school a lot for things she cant always help and is struggling with her work, at present shes around a year behind her peers with regards work but shes only in her second yr of infants so whos to say that as she progresses up the school its not going to get even harder for her, her teachers have said her concentration is a big problem and they find it very hard to get her to do work unless someone is sat at her table pushing her to do it, a diagnosis would mean she might get extra support in school, the headteacher has already said that if camhs find there is something wrong the school can then put things in place to help with the processing of things and support for my daughter, therefore enabling her to reach her full potential but thats if they diagnose her so Sally is right, support is limited in schools also it does cause problems at home, we find it hard to deal with outbursts and behaviour so some support on how to deal with these outburst will enable us to help her and support her.

 

As for the questions over and over a child who has had damage to their brain caused by alcohol which my daughter could havebecause im not sure what her problems are down to, means she may not remember the last time she asked the question therefore she wouldnt understand that answer, her teachers have already commented on her lack of ability to remember things, this could be down to her processing but ive no idea again a diagnosis would help us to understand whether this is normal or caused by her processing or maybe damage from drink.

 

A diagnosis wont make a difference to her as a person and i dont believe she will be judged based on a diagnosis, I believe a diagnosis will enable her to recieve the full support to reach her potential in life. And to be fair its my choice as a parent if i feel my child needs help to get her that help same as its your choice not to if that what you want, all it means is more doors are open to access support if they know whats causing the problems

[JeanneA]

Hi yes you do need to get a diagnosis for your daughter, she deserves all the support she needs. I do hope you will be successful in this please keep fighting for what you daughter definitely deserves.

[Sally44]

Also google ASD and perseverant speech, which means repeatedly asking the same question. It is a speech disorder. And also google echolalia to see if that is relevant too.

[Sally44]

I did a quick search and came up with this http://www.specialed...l/verbal11.html

 

Perseverant speech is asking the same question over and over regardless of being given an answer. You would want a full speech and language assessment of receptive and expressive language, social communication and emotional literacy carried out by a qualified Speech and Language Therapist with expertise in working with children with autism.

 

Her emotional literacy needs to be assessed to be sure she does understand her own emotions and the emotions in others. It can be all too easy for a child to copy, and for it to be assumed the child gets it. Laughing with you, does not mean she is laughing at what you are laughing at. She could be just copying the behaviour.

 

My own son used to tell me jokes, and laugh at them even though he did not understand what he had said, and could not tell me why the joke was funny! He was alot younger then, and there has been alot of improvement. But I have found time and time again over the years that I have assumed he knew things when he didn't.

Edited April 20, 2012 by Sally44

[justine1]

Don't mean to sound negative, but will a lable for the behaviours make them any different? Many of them sound like my AS son. I have had teachers and others encouraging me to get a diagnosis but he is does very well at school so I really don't see the benefit of giving him a lable that means others make opinions about him before they've met him. He is a quirky soul and I love him for it. Others can take him for who he is, or not. The good teachers have and will get the best out of him, those who don't 'get' him will not magically become able to teach him better because they are told he has AS. I am not going to have any more success in making him believe that basic hygiene matters (don't ask!), that he can look at and answer the neighbours when they speak to him, etc, etc, because he has a lable.

(Though perhaps if I'm entirely honest I sometimes wish he had a tee-shirt telling the world,so people don't assume he's just rude).

 

The physical, fidgety side though sounds more like my (NT) daughter. She is not still until she has run, swum, jumped, cycled off more energy than I have in a week!

 

I guess what I'm trying to say is that IMHO behaviours that are not typical of the majority don't always need to be viewed as a problem if they are not really causing one.

 

As for the questions again and again, after explaining clearly why or what and making sure it is understood, I have always answered that " Last time you asked the answer was ......Every time you ask (?timescale) the answer will be ............." It does not make it any less frustrating but at least it stops me having to explain everything every time the question comes.

 

Just about to hit post, then thought, and I am probably creating a peculiar theory! But I kind of get the caring more about animals than people; Children that like animals 'like dogs' and or 'like cats' or whatever, but even as adults we rarely 'like people'. So a random person with no emotional attachment being ill/dead is not as sad as a random animal. Sorry, that made sense in my head, hope you understand what I'm getting at!

 

Sorry but how can you say "...my AS son" if he does'nt have a diagnosis?? If you don't want to "label" him why are you referring him as your AS son,thats not only "labelling" but also false in that he has no dx, IMO.

 

Getting a dx is not about a label,I cannot think of one person who would go out to get a dx for the label. Its about getting the necessary help. While your son may be coping now who is to say he will still cope later on?(if he does indeed have AS) and given the difficulties many face in getting a dx as an adult don't you owe it to him to know for sure? Alot of the time schools and social services will say you don't need a dx to get the help but I know from experience it is not true and know so many who will agree the only way they/I did get help was by getting a dx. In my son's case I was pushed by his school to do so after they had tried to get an ed psych in for 6mths without success. Once he got his dx it took just 1 week to get an appt with the ed psych who went into the school 2 mths later.

 

It is always worth going to seek help when you have concerns even if it proves your child is NT/no problems at least you have done your part as a parent and expressed your concerns.

[woodstock246]

I think that seeking a diagnosis or label really depends on the extent of the difficulties of the child and what is needed to support them.

 

I know there are lots of undiagnosed ASD children out there in mainstream schools doing okay or even very well.

 

The problem comes when your child is not coping or not making progress and you cannot get anyone to do anything because you don't have that label. And although parents may be told [as I was] that your child will get whatever support the child needs without a label or diagnosis, that is a big fat lie. None of us parents would have needed to go through the battle we have done, to get the diagnosis if our child's needs were being so brilliantly met.

 

I really could have spent the last countless number of years, doing things I liked, or the family liked, instead of having to become some kind of SEN encyclopedia and lawyer rolled into one.

 

And the SEN process itself ie. getting a Statement, states that each and every need must be identified. How can it be identified without a label or diagnosis? It can't. You have to have it on paper before you can find out what is needed to meet that need. And as painstaking as that process is - that is the only option you have.

 

I remember, back when my son was first being seen by professionals, that I did not want him to get a diagnosis. I felt guilty attending appointments and answering questions about him, knowing that they would make lifelong decisions about him based on my answers. And IF he had been coping in school, I probably would not have gone through the process.

 

Although I had concerns, these were initially ignored. Then when my son started school, it was them that raised concerns and referred him to the SALT and EP. And then began an 18 month process of being referred on and on to more and more professionals until we got our diagnosis. Or rather a combination of diagnoses.

 

We did finally achieve what was needed. And thankfully our son is now back in school and more importantly in a school that he is happy to attend, and where he is making progress and his mental health is improving.

 

A label for the behaviours won't make them different. But a diagnosis of FASD may mean the autism advisory teacher does not get involved because of the label given to the difficulties - whereas labelling the difficulties under the umbrella of an ASD possibly due to alcohol abuse of the mother, may allow this child access to professionals that maybe able to make suggestions to school and home on how she could be supported and may allow this child access to professional therapy that maybe none existent for children with FASD.

 

I think Sally44 verbalised my thoughts better than I put them across. I was not suggesting that the OP's daughter does not need a diagnosis, just that perhaps it would not be a cure all.

 

Justine1 I have bounced between the need to get a dx and not for years. You say 'if indeed he does have AS' Bearing in mind his father has AS, and that I work with youngsters with AS and autism, and I have been advised, without having asked for advice or even mentioning the subject, to seek a diagnosis, I hope I would have some idea (though I do not claim to be an expert). Part of me would love to get a dx, but at the moment I don't think it would be a good thing for him. Things as they are, we don't need one, educationally things are good. I am aware, through his father, how difficult it can be as an adult to have it confirmed.

 

I apologise for appearing so opinionated.

[justine1]

I think Sally44 verbalised my thoughts better than I put them across. I was not suggesting that the OP's daughter does not need a diagnosis, just that perhaps it would not be a cure all.

 

Justine1 I have bounced between the need to get a dx and not for years. You say 'if indeed he does have AS' Bearing in mind his father has AS, and that I work with youngsters with AS and autism, and I have been advised, without having asked for advice or even mentioning the subject, to seek a diagnosis, I hope I would have some idea (though I do not claim to be an expert). Part of me would love to get a dx, but at the moment I don't think it would be a good thing for him. Things as they are, we don't need one, educationally things are good. I am aware, through his father, how difficult it can be as an adult to have it confirmed.

 

I apologise for appearing so opinionated.

 

Of course it is your choice whether or not to seek a diagnosis and you probably right in thinking he does have AS as you have a strong knowledge of AS. However I was just pointing out that you talking about labels but you mention "my AS son" not just "my son" which is a little contradicting IMO and at the end of the day you cannot really say he has AS when it has not been confirmed by a professional no matter how much experience you have with AS,but again thats just my view.

 

You do have a point that prehaps it is not always necessary to get a diagnosis if one is coping,but I just feel as a parent its always good to get things confirmed. If my children are sick I take them to the GP to get medicine or advice and likewise if there is any delay in development I would seek advice on what the problem may be and how I can help my child. Regardless of how well they may be doing at that point in time.

[chris54]

A diagnosis is not a cure. I have seen many who thing that once they have their diagnosis all the problems will end which is obviously not true. What it is, what it may do is open a few door. A very simple example, I take my son to the dentist, its on his records that he has Autism, the dentist, a new one this time has read this, no need for an explanation from me.

 

IMO it is wrong to say that a child has a condition if they are not formally diagnose. It may be OK to say they appear to have XYZ.

I can say I think I have XYZ, but I don't say I do as I don't know.