CAMHS are not going to test my son for ASD, what do I do?

[echelon]

The student nurse has decided that they are not going to test for ASD because my son is demonstrating 'normal' communication. Since when would a student nurse be in the position to decide something like this?

 

My son has also told me that he hears strange noises and voices sometimes. Would this be usual?

 

I don't know what to do and I am very depressed.

 

 

[Sally44]

No a student nurse cannot decide that.

Why were you seeing this nurse? Was it as part of a referal?

Have a look further down this forum at Coolblues post about the Autism Exemplar. That might help you get an overview of what 'should' be done.

I would go back to your GP and ask for a referal to a multi disciplinary team that has experience of diagnosing ASDs. I would also raise your other concerns about noises or voices. Do you feel this could be part of hypersensitive hearing, or do you feel it is more voices in his head? Or when he says this could he mean he is replaying things in her head that she has already heard? My son frequently re-watches things 'in his head', and how he would explain that to me might sound similar to how you've said it.

[JsMum]

 

 

 

I would contact NAS to discuss Assessments of ASD, dont forget there is also the private route though expensive it isnt compaired to the consequences of undx throw childhood only getting a dx in later adulthood.

 

My son has significant speech, language and communication impairments but he can talk, it is his comprehension and how see the world that is different for him, he misinturprits situations and he has little understanding of a complex conversation so just because he may look like he can communicate doesnt mean he gets it.

 

I would attend a parents ASD group and discuss your concerns and to see if there is other parents with children like your son, though no Two ASD children are the same there is similarities.

 

Anyway good luck, NAS will help you further with and ASSESSMENT and also Aspergers Syndrome.

 

JsMumxxx

 

[OAASIS]

The student nurse has decided that they are not going to test for ASD because my son is demonstrating 'normal' communication. Since when would a student nurse be in the position to decide something like this?

 

My son has also told me that he hears strange noises and voices sometimes. Would this be usual?

 

I don't know what to do and I am very depressed.

 

Hello,

 

sometimes children with AS hear voices in their head, and even talk to them, but actually this is something we all do - like if we see something we like in a shop, we are mentally having a conversation in our head. For example - 'oh, that's nice, but it's expensive, I don't think I should buy it, or maybe I could just afford it'. We are able to understand that this is our own thoughts but some children with AS cannot distinguish this and believe it is someone else talking. With regards to getting an assessment, we always advise parents to keep a diary of all the concerns you have about your child's behaviour as this can be used as evidence to support your concerns. If you have any letters from school or other professionals that refer to your son's behaviours then keep them as well. If school has concerns perhaps you could get them to also log behaviours so that when you visit the GP/CAMHS again you have a list of concerns. If you think he has an ASD then look at the Triad of Impairment and list things that relate, such as how he interacts with peers, how he plays with toys, whether he has routines etc

 

Good luck and Best wishes,

OAASIS

[Karen A]

The student nurse has decided that they are not going to test for ASD because my son is demonstrating 'normal' communication. Since when would a student nurse be in the position to decide something like this?

 

My son has also told me that he hears strange noises and voices sometimes. Would this be usual?

 

I don't know what to do and I am very depressed.

 

Hi.Do you know where you saw the Student and are you sure it was a student nurse ?

I trained and worked as a nurse for many years.I also trained and worked as a district nurse [the district nursing course is a community nursing course which is shared with Health Visitors and CPNs except for specialist subjects].

It sounds a bit strange that a student nurse could be involved in assessments for ASD at all.

Could it have been a Health Visitor trainee ?

In any case a Student would be working under supervision and should not be making clinical decisions without supervision.

I think it would be worth contacting PALS for whichever trust the Student Nurse was placed.

http://www.pals.nhs.uk/

 

It may be worth making a written request to meet with the line manager for the individual who supervises the Student to discuss your concerns.

Your child should be assessed by either a multidisciplinary team within your area with responsibility for assessing for ASD or a Child Development Team.

It would be worth going to talk to your GP who will be able to arrange the referal.

Any sort of Student whether nurse or HV student does not have the experience to make this sort of decision.

How old is your child ?

Karen.

Edited November 21, 2009 by Karen A

[cmuir]

Hi

 

Don't give up. You're perfectly entitled to ask for a second opinion from someone that has specific expertise in autism. It's worth pointing out that whilst you wouldn't belittle anyone's experience or professionalism, that you know your child best (ie you've seen them for longer than 30 minutes!). I'm not saying that parents are always right, but I am saying that there's a lot to be said for a mother's gut feeling. It's worth enlisting the support of your child's nursery/school staff - use reports from them and anyone else eg Educational Psychologist, etc.

 

It can be helpful to keep a diary of anything that strikes you as being out of the ordinary (I should add that I was told by CAMHS that this was a negative thing to do - 'nonsense' was my response as it's simply recording issues that need to be flagged up). There's true value in keeping a diary, as in my son's case, so much was happening daily, that recording things on paper was the only way that I could remember things.

 

Lastly, my son has AS and he can appear perfectly 'normal' at times. Having an ASD doesn't mean that someone's communication issues will always be clearly noticeable. It's very much dependent upon lots of things, eg whether that person is at ease/anxious/nervous/etc.

 

Best wishes.

 

Caroline.

Edited November 21, 2009 by cmuir

[echelon]

Hi.Do you know where you saw the Student and are you sure it was a student nurse ?

I trained and worked as a nurse for many years.I also trained and worked as a district nurse [the district nursing course is a community nursing course which is shared with Health Visitors and CPNs except for specialist subjects].

It sounds a bit strange that a student nurse could be involved in assessments for ASD at all.

Could it have been a Health Visitor trainee ?

In any case a Student would be working under supervision and should not be making clinical decisions without supervision.

I think it would be worth contacting PALS for whichever trust the Student Nurse was placed.

http://www.pals.nhs.uk/

 

It may be worth making a written request to meet with the line manager for the individual who supervises the Student to discuss your concerns.

Your child should be assessed by either a multidisciplinary team within your area with responsibility for assessing for ASD or a Child Development Team.

It would be worth going to talk to your GP who will be able to arrange the referal.

Any sort of Student whether nurse or HV student does not have the experience to make this sort of decision.

How old is your child ?

Karen.

 

Yes, she is a student nurse, she told me. She is working under the supervision of the nurse at CAMHS who is qualified. I still think that she is stepping out of line by telling my son that he doesn't have adhd before the cognitive test results are back and also by telling her superior that she doesn't think he communications badly enough to warrant an ASD assessment.

 

I just feel railroaded by these people and I don't think that a student nurse should have so much say in things. She doesn't have the experience to be deciding these things. I am a qualified nurse and I certainly wasn't allowed to take decisions of this magnitude when I was training.

 

[echelon]

Hi

 

Don't give up. You're perfectly entitled to ask for a second opinion from someone that has specific expertise in autism. It's worth pointing out that whilst you wouldn't belittle anyone's experience or professionalism, that you know your child best (ie you've seen them for longer than 30 minutes!). I'm not saying that parents are always right, but I am saying that there's a lot to be said for a mother's gut feeling. It's worth enlisting the support of your child's nursery/school staff - use reports from them and anyone else eg Educational Psychologist, etc.

 

It can be helpful to keep a diary of anything that strikes you as being out of the ordinary (I should add that I was told by CAMHS that this was a negative thing to do - 'nonsense' was my response as it's simply recording issues that need to be flagged up). There's true value in keeping a diary, as in my son's case, so much was happening daily, that recording things on paper was the only way that I could remember things.

 

Lastly, my son has AS and he can appear perfectly 'normal' at times. Having an ASD doesn't mean that someone's communication issues will always be clearly noticeable. It's very much dependent upon lots of things, eg whether that person is at ease/anxious/nervous/etc.

 

Best wishes.

 

Caroline.

 

 

Thank you Caroline. I agree with everything you've just said. I also feel very belittled by CAMHS and I hate seeing them and having to go through this process.

 

[Sally44]

Has your son been assessed by a suitably qualified speech and language therapist?

Very often our children can appear to be able to be communicating adequately, but their understanding of language can be significantly affected. They can have problems with semantics and pragmatics, literal interpretation of language, no understanding or use of voice tone, facial expressions and gestures. All these things impact on their understanding and also affect how others react to them.

After a couple of years of my son being under SALT I found out that they had not assessed his social communication skills (use of social language). So I wrote to the head of the department and said that as he had a diagnosis, and therefore had to have difficulties in that area, I found it incredible that in 3 years they had not found the time to assess him. I also asked for an experienced SALT that had experience in both speech disorders and ASDs. And more importantly, I PUT IT IN WRITING. Verbal conversations and agreements may or maynot happen. If you have something in writing it is evidence of what was said, or not done, etc. So always document things in writing and always request things in writing and if you have a conversation with someone send in a 'clarification' letter of what was discussed and what was agreed.

You don't say what age your child is?

As already suggested the National Autistic Society should be able to give you information about how to get a second opinion or how to be assessed towards a diagnosis in your area. But remember that when you get the diagnosis that is all you get. They don't give you any information or details on how it affects your child - and every child is different. Assessments should be carried out via education (Educational Psychologist), and also through NHS eg. SALT, OT etc. But many parents find it hard to have assessments carried out because once they find something they have to meet that need, and that costs the school/LEA money.

Have you heard of an organisation called BIBIC. It is a charity that can carry out assessments. There is an admin fee, and they do ask that you give a donation. And they do put together a programme that they want parents to commit to for at least two years. But that might be a way of getting some indepth assessments that you can follow through yourself, and also which you can use as evidence of what supports are needed in school. If his difficulties are significant and complex, then it would be something you could use towards the Statementing process.

 

[Karen A]

Yes, she is a student nurse, she told me. She is working under the supervision of the nurse at CAMHS who is qualified. I still think that she is stepping out of line by telling my son that he doesn't have adhd before the cognitive test results are back and also by telling her superior that she doesn't think he communications badly enough to warrant an ASD assessment.

 

I just feel railroaded by these people and I don't think that a student nurse should have so much say in things. She doesn't have the experience to be deciding these things. I am a qualified nurse and I certainly wasn't allowed to take decisions of this magnitude when I was training.

 

Hi.I agree with you.I would never have been allowed to make such an important decision.Times have obviously changed and not for the better.

I still think it worth talking to the CAMHS nurse that is supervising the student.

When Ben was assessed the CAMHS psychotherapists who are graduates,specialists in the field,have had years of training ...... and had known us for two years were not in a position to over rule the psychiatrist even though they did not agree re AS diagnosis .....so for a student nurse to even be involved in assessments sounds a very long way off the mark.

 

The student may have told her superior but that does not amount to you having to agree.

I think it may well be worth checking whether the assessment by the CAMHS nurse is a step in the process towards assessment by the panel or multidisciplinary team who are specialists in diagnosing ASD.

If not then ask your GP for a referal to that team.

If the CAMHS nurse is part of CAMHS first stage assessment before referal to the MDT then it may well be worth attempting to stick with it however difficult it is.It is fine to be clear and assertive about your unhappiness with the student.However you may need to go through the first level of pre-assessment in order to obtain referal to the Specialist Team.

BIBIC may well be helpful.However they cannot conduct diagnostic assessments for ASD.The SALT who would need to do assessments for ASD would need to be part of the MDT team.There are also other ways to obtain a diagnosis of ASD however most require a referal or the agreement of CAMHS.Even if you decide to look into private aseessments these may be costly and do not have the same credability with the LA as an NHS diagnosis.

So however difficult it may be it may be worth attempting to push CAMHS rather than looking at alternatives.

I honestly do know how difficult that can be.We were with CAMHS three years before Ben was diagnosed with AS last year. <'>

Edited November 23, 2009 by Karen A

[echelon]

Has your son been assessed by a suitably qualified speech and language therapist?

Very often our children can appear to be able to be communicating adequately, but their understanding of language can be significantly affected. They can have problems with semantics and pragmatics, literal interpretation of language, no understanding or use of voice tone, facial expressions and gestures. All these things impact on their understanding and also affect how others react to them.

After a couple of years of my son being under SALT I found out that they had not assessed his social communication skills (use of social language). So I wrote to the head of the department and said that as he had a diagnosis, and therefore had to have difficulties in that area, I found it incredible that in 3 years they had not found the time to assess him. I also asked for an experienced SALT that had experience in both speech disorders and ASDs. And more importantly, I PUT IT IN WRITING. Verbal conversations and agreements may or maynot happen. If you have something in writing it is evidence of what was said, or not done, etc. So always document things in writing and always request things in writing and if you have a conversation with someone send in a 'clarification' letter of what was discussed and what was agreed.

You don't say what age your child is?

As already suggested the National Autistic Society should be able to give you information about how to get a second opinion or how to be assessed towards a diagnosis in your area. But remember that when you get the diagnosis that is all you get. They don't give you any information or details on how it affects your child - and every child is different. Assessments should be carried out via education (Educational Psychologist), and also through NHS eg. SALT, OT etc. But many parents find it hard to have assessments carried out because once they find something they have to meet that need, and that costs the school/LEA money.

Have you heard of an organisation called BIBIC. It is a charity that can carry out assessments. There is an admin fee, and they do ask that you give a donation. And they do put together a programme that they want parents to commit to for at least two years. But that might be a way of getting some indepth assessments that you can follow through yourself, and also which you can use as evidence of what supports are needed in school. If his difficulties are significant and complex, then it would be something you could use towards the Statementing process.

 

No, he hasn't seen any specialist speech or language therapist. He doesn't seem to have been seen by anybody with any credibility at all to be honest. I think that we're getting a raw deal. The parent support advisor who came out to the house today seemed appalled by CAMHS behaviour throughout all this. She can't believe that a student nurse is making decisions like this. I feel quite despondant about it all. The more I described his behaviour to her, the more she thought that he needs an ASD assessment. She's going to speak to CAMHS and go into school to do an observation as she thinks that they are missing things.

 

I shall contact the people that you have suggested and seek some proper advice. Thank you for your reply.

 

[Karen A]

No, he hasn't seen any specialist speech or language therapist. He doesn't seem to have been seen by anybody with any credibility at all to be honest. I think that we're getting a raw deal. The parent support advisor who came out to the house today seemed appalled by CAMHS behaviour throughout all this. She can't believe that a student nurse is making decisions like this. I feel quite despondant about it all. The more I described his behaviour to her, the more she thought that he needs an ASD assessment. She's going to speak to CAMHS and go into school to do an observation as she thinks that they are missing things.

 

I shall contact the people that you have suggested and seek some proper advice. Thank you for your reply.

 

Hi.

If school are supportive a very useful avenue to explore might be to see if you can request some observations and advice from an Educational Psychologist.

I think it is unusual way to go about things.

It is a more frequent case that people have some support from the NHS and have difficulty obtaining support from school/LA.

However EPs are extremely well trained.If the parent support advisor,SENCO or HT could request an EP opinion that might be very useful.

An observation done in school during unstructured activities [Eg play time ] would show far more regarding possible ASD than an observation carried out by a Student Nurse in an office.

Karen.

 

[trekster]

No, he hasn't seen any specialist speech or language therapist. He doesn't seem to have been seen by anybody with any credibility at all to be honest. I think that we're getting a raw deal. The parent support advisor who came out to the house today seemed appalled by CAMHS behaviour throughout all this. She can't believe that a student nurse is making decisions like this. I feel quite despondant about it all. The more I described his behaviour to her, the more she thought that he needs an ASD assessment. She's going to speak to CAMHS and go into school to do an observation as she thinks that they are missing things.

 

I shall contact the people that you have suggested and seek some proper advice. Thank you for your reply.

 

Your regional team might be able to help you;

 

Our regional teams co-ordinate all NAS services and activities - including the support of local NAS branches - in their own areas. They also work to promote autism awareness.

 

This team covers the North West, North East, Yorkshire and the Humber.

 

Regional Coordinator: Sharron McIndoe

The National Autistic Society

Anglo House

Chapel Road

Northenden

Manchester M22 4JN

 

Tel: 0161 998 7860

Fax: 0161 945 2703

Email: nregionalteam@nas.org.uk

http://www.nas.org.uk/nas/jsp/polopoly.jsp...567&a=15489

[Feather]

The student nurse has decided that they are not going to test for ASD because my son is demonstrating 'normal' communication. Since when would a student nurse be in the position to decide something like this?

 

My son has also told me that he hears strange noises and voices sometimes. Would this be usual?

 

I don't know what to do and I am very depressed.

 

 

Hi there, sorry to hear about your difficulties with CAMS. We had the same problems, and in the end I contacted the NAS and found out where the nearest diagnostician team was to me. I then got my GP to refer my son for a second opinion, and the paediatrician he was under at the time had to refer him as well. You are quite within your rights to do this. My son was seen within a few months by the autism specialist, and diagnosed straight away as being ASD. We had been backwards and forwards to CAMS and the paediatrician for about 4 years before I realised I could ask for a second opinion. We are so appalled at the way our son and ourselves have been treated by CAMS and the paediatrician, that I have now got my local MP to help me put in a complaint and have the matter investigated. Has your child got a statement at school, if not, you can also request for your son to be assesed n school by the psychologist, you don't have to wait for school to do it. I wish I had known all this information years ago, and I would have got my son diagnosed straight away. The NAS should also be able to give you advice about asking for an assesment for statementing as well. Good Luck Poll xx

[Feather]

The student nurse has decided that they are not going to test for ASD because my son is demonstrating 'normal' communication. Since when would a student nurse be in the position to decide something like this?

 

My son has also told me that he hears strange noises and voices sometimes. Would this be usual?

 

I don't know what to do and I am very depressed.

 

 

Hi there, sorry to hear about your difficulties with CAMS. We had the same problems, and in the end I contacted the NAS and found out where the nearest diagnostician team was to me. I then got my GP to refer my son for a second opinion, and the paediatrician he was under at the time had to refer him as well. You are quite within your rights to do this. My son was seen within a few months by the autism specialist, and diagnosed straight away as being ASD. We had been backwards and forwards to CAMS and the paediatrician for about 4 years before I realised I could ask for a second opinion. We are so appalled at the way our son and ourselves have been treated by CAMS and the paediatrician, that I have now got my local MP to help me put in a complaint and have the matter investigated. Has your child got a statement at school, if not, you can also request for your son to be assesed n school by the psychologist, you don't have to wait for school to do it. I wish I had known all this information years ago, and I would have got my son diagnosed straight away. The NAS should also be able to give you advice about asking for an assesment for statementing as well. Good Luck Poll xx

[Sally44]

No, he hasn't seen any specialist speech or language therapist. He doesn't seem to have been seen by anybody with any credibility at all to be honest. I think that we're getting a raw deal. The parent support advisor who came out to the house today seemed appalled by CAMHS behaviour throughout all this. She can't believe that a student nurse is making decisions like this. I feel quite despondant about it all. The more I described his behaviour to her, the more she thought that he needs an ASD assessment. She's going to speak to CAMHS and go into school to do an observation as she thinks that they are missing things.

 

I shall contact the people that you have suggested and seek some proper advice. Thank you for your reply.

 

You can also phone the NAS about getting a diagnosis to see if there is another way in your area. But you want a multi disciplinary team that has experience of diagnosing ASD.

[Sally44]

The process in our area appears to be the child is picked up at school (if they are not picked up sooner). School refer to the SALT and EP who see the child in school. The SALT also does a home visit. They refer onto the Clinical Psychologist and the Developmental Paediatrician at a special unit, which is part of the childrens hospital. The DP visited school and observed my son there and also saw him twice in clinic. The CP saw him twice in clinic. Although we have CAMHS. They are not automatically part of the circle of the MDT, unless the child has specific problems which fall under their remit.

 

 

[echelon]

The process in our area appears to be the child is picked up at school (if they are not picked up sooner). School refer to the SALT and EP who see the child in school. The SALT also does a home visit. They refer onto the Clinical Psychologist and the Developmental Paediatrician at a special unit, which is part of the childrens hospital. The DP visited school and observed my son there and also saw him twice in clinic. The CP saw him twice in clinic. Although we have CAMHS. They are not automatically part of the circle of the MDT, unless the child has specific problems which fall under their remit.

 

Well, I'm not impressed at all with CAMHS. There doesn't seem to be a doctor or specialist in sight apart from to write the scripts for Ritalin for the adhd kids. This wretched so called 'specialist nurse' seems to run the joint.

 

I think that we're going to get fobbed off again. I shall have to try and get some help before we see them in clinic next Tuesday. I can't stand going through all this battle again.

[latmaz]

havent posted here for a long time as we have been going thru various channels to no avail

 

like u echelon CAHMS have not been any real help and altho they say ds 'may' be in the austitic spectrum its very minor and therefore he wont be tested and they wont refer him on.

 

once again hes been excluded at school due to him telling a teacher to 'f off' etc. i think they now just have him down as being 'naughty' and the school PSM told me maybe he 'needs a good talking to' umm do they think we havent talked to him

 

am really at the end of my tether and have no idea where to go from here. maybe he is just naughty but the more i read the more i see asd tendencies so why can no one else? or am i just fooling myself

 

anyways echelon just wanted to say i know how u feel

 

[shaz71]

havent posted here for a long time as we have been going thru various channels to no avail

 

like u echelon CAHMS have not been any real help and altho they say ds 'may' be in the austitic spectrum its very minor and therefore he wont be tested and they wont refer him on.

 

once again hes been excluded at school due to him telling a teacher to 'f off' etc. i think they now just have him down as being 'naughty' and the school PSM told me maybe he 'needs a good talking to' umm do they think we havent talked to him

 

am really at the end of my tether and have no idea where to go from here. maybe he is just naughty but the more i read the more i see asd tendencies so why can no one else? or am i just fooling myself

 

anyways echelon just wanted to say i know how u feel

 

Hi have you been on a parenting course i aren't saying you aren't doing a good job but they are good, it is hard graft as i am on one currently and my daughter was a little so and so although she can be still unpredictable she is better than what she was, i know she is on the autistic spectrum and to be honest i think she is over the worst, you don't say how old your child is? My daughter is 7yr old she isn't bad at school as she is highly anxious and she loves routine but she was really bad at home as i didn't have a routine or not a clear cut one so she was extemely hyper, although she doesn't stop fidgeting at school. As he been seen by a pscychologist, my daughter hasn't but she has been seen by a speech therapist who says she is behind in expressive and receptive speech by 2yrs. She also just been diagnosed with irlens and as a pink overlay which also could be a sign of dyslexia as normally go hand in hand, she also has dyscalcula for definate as she reads all number sequence backwards, digital clocks backwards and even when told a number she reversas it bless her. And all this can go hand in hand with another learning disability although i know she isn't severe as she is social she can sometimes get this wrong ie like talks to her friends at the side of them looking everywhere else except them although it isn't noticeable to everyone else at the minuite as 7-8yr olds aren't that bothered but hopefully she may pick it up, i know she doesn't read none communication right as she still thinks people are playing when getting annoyed. She also isn't too good with fine motor skills so i do think she may be either aspergers or dyspraxic. Sharonx

[shaz71]

Hi have you been on a parenting course i aren't saying you aren't doing a good job but they are good, it is hard graft as i am on one currently and my daughter was a little so and so although she can be still unpredictable she is better than what she was, i know she is on the autistic spectrum and to be honest i think she is over the worst, you don't say how old your child is? My daughter is 7yr old she isn't bad at school as she is highly anxious and she loves routine but she was really bad at home as i didn't have a routine or not a clear cut one so she was extemely hyper, although she doesn't stop fidgeting at school. As he been seen by a pscychologist, my daughter hasn't but she has been seen by a speech therapist who says she is behind in expressive and receptive speech by 2yrs. She also just been diagnosed with irlens and as a pink overlay which also could be a sign of dyslexia as normally go hand in hand, she also has dyscalcula for definate as she reads all number sequence backwards, digital clocks backwards and even when told a number she reversas it bless her. And all this can go hand in hand with another learning disability although i know she isn't severe as she is social she can sometimes get this wrong ie like talks to her friends at the side of them looking everywhere else except them although it isn't noticeable to everyone else at the minuite as 7-8yr olds aren't that bothered but hopefully she may pick it up, i know she doesn't read none communication right as she still thinks people are playing when getting annoyed. She also isn't too good with fine motor skills so i do think she may be either aspergers or dyspraxic. Sharonx

 

Also i forgot to add she as also been diagnosed recently with reflux, which a lot of children with asd can have gastro problems from intestinal to reflux. Sharon x

[shaz71]

Hi have you been on a parenting course i aren't saying you aren't doing a good job but they are good, it is hard graft as i am on one currently and my daughter was a little so and so although she can be still unpredictable she is better than what she was, i know she is on the autistic spectrum and to be honest i think she is over the worst, you don't say how old your child is? My daughter is 7yr old she isn't bad at school as she is highly anxious and she loves routine but she was really bad at home as i didn't have a routine or not a clear cut one so she was extemely hyper, although she doesn't stop fidgeting at school. As he been seen by a pscychologist, my daughter hasn't but she has been seen by a speech therapist who says she is behind in expressive and receptive speech by 2yrs. She also just been diagnosed with irlens and as a pink overlay which also could be a sign of dyslexia as normally go hand in hand, she also has dyscalcula for definate as she reads all number sequence backwards, digital clocks backwards and even when told a number she reversas it bless her. And all this can go hand in hand with another learning disability although i know she isn't severe as she is social she can sometimes get this wrong ie like talks to her friends at the side of them looking everywhere else except them although it isn't noticeable to everyone else at the minuite as 7-8yr olds aren't that bothered but hopefully she may pick it up, i know she doesn't read none communication right as she still thinks people are playing when getting annoyed. She also isn't too good with fine motor skills so i do think she may be either aspergers or dyspraxic. Sharonx

 

Sorry me again meant to say she has seen a psychologist from cahms who referred us to the parenting course which is good as it works on positive praise which does help asd kids as they suffer from low self esteem so the positive praise works on that and the routines put into place help as well and the reward charts although only one at a time works ie one behaviour at a time works it has worked for her getting dressed in the morning although i still have to help her with socks and tights as she struggles with them. But she hasn't been seen by a educational psychologist which i think is the next step as they can see what she is struggling with at school. How is your boy doing in school education wise? Even for his behaviour if he is ok at school education wise the ed psych can tell what is triggering it off so i would go down that route. Sharon x

 

[NobbyNobbs]

Well, I'm not impressed at all with CAMHS. There doesn't seem to be a doctor or specialist in sight apart from to write the scripts for Ritalin for the adhd kids. This wretched so called 'specialist nurse' seems to run the joint.

 

I think that we're going to get fobbed off again. I shall have to try and get some help before we see them in clinic next Tuesday. I can't stand going through all this battle again.

i know a lot of Camhs are using specialist nurses to filter the people asking for a diagnosis of ASD. it was what happened for me. i was seen by a nurse specialist who then put me forward for an assessment and contnued to gather information while i waited for the assessment. he explained that this method was because the waiting list for an ASD dx is so long now that its unworkable. the nurse specialist sees everyone and gathers the information about why the person is looking for a dx. in my case he then told me he was putting me forward for an assessment but it was a formality because he was certain i had AS, if he had felt i did not fit the criteria for ASD i presume he would have told me i would not have an assessment. by filtering everyone in this way the waiting time for an assessment was reduced from over 2 years to 6 months.

[trekster]

havent posted here for a long time as we have been going thru various channels to no avail

 

like u echelon CAHMS have not been any real help and altho they say ds 'may' be in the autistic spectrum its very minor and therefore he wont be tested and they wont refer him on.

 

i was diagnosed with mild AS and i get severe disability benefits, they are fobbing you off and thats disgusting. Have you tried contacting PALS?

http://www.pals.nhs.uk/ they are supposed to be independent of NHS.

 

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=2376 is the NAS guide to getting a diagnosis.

once again hes been excluded at school due to him telling a teacher to 's off' etc. i think they now just have him down as being 'naughty' and the school PSM told me maybe he 'needs a good talking to' umm do they think we haven't talked to him

 

poor emotional and inhibition control typical autism that is. i should know as im unable to understand my emotions and those of others.

am really at the end of my tether and have no idea where to go from here. maybe he is just naughty but the more i read the more i see asd tendencies so why can no one else? or am i just fooling myself

 

anyways echelon just wanted to say i know how u feel

 

From the same site are details of what to do if your GP refuses to refer your child on. Same site as quoted before on NAS.

 

"My GP refuses to refer my child on

 

Due perhaps either to financial constraints or lack of knowledge about ASDs some GPs are unwilling to refer people on. Unfortunately you have few legal rights in this situation. Under the Patients Charter you can ask to see a consultant of your choice or seek a second opinion if you are dissatisfied with the first, but only with the agreement of your GP. However, being assertive and persistent can help. You might also find the following tips useful:

 

* prepare notes on what you want to say to your GP prior to your appointment

* keep a diary to record any unusual behaviours exhibited by your child and their frequency

* give your GP some NAS information on ASD or encourage them to contact our Information Centre (tel: 0845 070 4004, email: nas@nas.org.uk) if they have any specific questions

* if your GP is part of a group practice, ask to see one of the other doctors."

 

Good luck all parents/undiagnosed autistics.

 

Alexis

 

[trekster]

i know a lot of Camhs are using specialist nurses to filter the people asking for a diagnosis of ASD. it was what happened for me. i was seen by a nurse specialist who then put me forward for an assessment and continued to gather information while i waited for the assessment. he explained that this method was because the waiting list for an ASD dx is so long now that its unworkable. the nurse specialist sees everyone and gathers the information about why the person is looking for a dx. in my case he then told me he was putting me forward for an assessment but it was a formality because he was certain i had AS, if he had felt i did not fit the criteria for ASD i presume he would have told me i would not have an assessment. by filtering everyone in this way the waiting time for an assessment was reduced from over 2 years to 6 months.

 

Personally i preferred waiting the 18months for the diagnosis. i was able to give answers that on the surface seemed NT but digging deeper i was just more naive than that.

 

Alexis

[NobbyNobbs]

Personally i preferred waiting the 18months for the diagnosis. i was able to give answers that on the surface seemed NT but digging deeper i was just more naive than that.

the whole point of a nurse specialist is that they are a specialist in the area. mine didn't just sit me down and ask direct questions about things, he asked very strange questions that seemed to have no relevance to anything and listened to the way i talked. he listened to what my mother had to say (she didn't think i had AS at that point) and made his conclusions from that. i saw him about 10 times before my assessment so he had gathered a lot of information which in turn sped up my assessment as the dx team didn't have to ask a lot of information. in my county there is one assessment team for adults that sees two people a month. i would imagine there is more for children, but that there are also more children who are being put forward for an assessment.

 

echelon, has your son had an educational psychologist assessment? that would be a good place to start as people with ASD often have spikey profiles (a bit more evidence that he needs the assessment). you might also be able to be seen at the child development centre. getting the school to refer to anything they can will also help. i know a lot of people here got to the assessment because the school pushed for it.

 

 

[trekster]

the whole point of a nurse specialist is that they are a specialist in the area. mine didn't just sit me down and ask direct questions about things, he asked very strange questions that seemed to have no relevance to anything and listened to the way i talked. he listened to what my mother had to say (she didn't think i had AS at that point) and made his conclusions from that. i saw him about 10 times before my assessment so he had gathered a lot of information which in turn sped up my assessment as the dx team didn't have to ask a lot of information. in my county there is one assessment team for adults that sees two people a month. i would imagine there is more for children, but that there are also more children who are being put forward for an assessment.

 

echelon, has your son had an educational psychologist assessment? that would be a good place to start as people with ASD often have spikey profiles (a bit more evidence that he needs the assessment). you might also be able to be seen at the child development centre. getting the school to refer to anything they can will also help. i know a lot of people here got to the assessment because the school pushed for it.

 

i understand nobbynobbs now you put it that way. Only 2 referrals per month? But what happens when they get it wrong like in the OP case?

i agree about the ed psyc appointment as well.

 

Alexis

[latmaz]

thanks so much for the replies, sorry i havent been back on but have had ds at home due to the suspension

 

we went thru cahms 3 yrs ago and just saw a nurse who who to be frank didnt say a great deal, then we saw someone else 2 yrs ago who spent most of the time trying to recruit me as i apparently had a good parenting skills and had learnt to deal so effectively with ds that she thought i could help others!!! since then we recently saw tier 2 cahms advisor who is the one who said he 'could' be on the scale

 

the school promised behaviour support and an ed psych but this has not happened. i am due to see them again today and am going to push for this again. am also going to the dr later to ask for him to be referred and possibly to see if we can get an ADOS (?) assessment

 

trekster thankyou will look into PALS

 

shaz dont think a parenting course will help, all the people we have seen say how well i deal with ds and have things under control at home, of course thats wonderful isnt it? (sarcasm!) just cos i can keep him fairly calm at home doesnt really help in school when he explodes and then gets a suspension.

 

aaah well onwards and upwards

 

echelon sorry if i have taken over your post, maybe i should post this seperately? but i felt that are siutations are fairly similar

 

 

[Sally44]

If you are having problems with the local 'systems' for diagnosing ASD, then speak with the NAS. There are other ways, of getting your children seen, assessed and diagnosed. Once they have a diagnosis, you then move onto the next step which is pushing for support and provision. I do get the impression that often 'not diagnosising' is a strategy for not having to provide supports. Although 'every childs needs' are supposed to be met in school regardless of whether or not they have a diagnosis. In fact, a diagnosis always helps.

[Paula]

i spent years of frustration trying to get my son diagnosed................In the end i gave up because as someone wisley told me the diagnosis changes nothing the problems are still the same............it was the best thing i did i just walked away from the whole cahms ,specialists,peadatricians everything system and the releif was great............My recent experiance of getting back in touch with these peole has only reinforced the fact i did the right thing.In my opinion youre on youre own with aspergers and its best to get on with it the best way you can.............

[Karen A]

i know a lot of Camhs are using specialist nurses to filter the people asking for a diagnosis of ASD. it was what happened for me. i was seen by a nurse specialist who then put me forward for an assessment and contnued to gather information while i waited for the assessment. he explained that this method was because the waiting list for an ASD dx is so long now that its unworkable. the nurse specialist sees everyone and gathers the information about why the person is looking for a dx. in my case he then told me he was putting me forward for an assessment but it was a formality because he was certain i had AS, if he had felt i did not fit the criteria for ASD i presume he would have told me i would not have an assessment. by filtering everyone in this way the waiting time for an assessment was reduced from over 2 years to 6 months.

 

Hi.I probably sound negative but have to say that the system of using nurses to do pre-assessments has been around for many years in other areas.It has little to do with patients and everything to do with meeting targets for waiting lists.I do not know of any nurse that is qualified or trained in ASD diagnosis.I trained as a District Nurse.Much of the course was shared with psychiatric nurses and health visitors.A health visitor might well be involved in pre-assessment for under fives.However general nurses and psychiatric nurses do not have training in ASD.

 

My elder son has been refered for an urgent cardiology appointment.A similar system is in operation for cardiology appointments.The trust is not allowed to exceed the two week time limit for offering an appointment.So we waited two weeks before any effort was made to offer an appointment two weeks later.....four weeks in total.

 

Even if it is appropriate for a nurse specialist to be involved in pre-screening the point made by the OP was that the assessments were being done by a Student Nurse who is not even qualified as a nurse.

Karen.

 

 

[trekster]

i spent years of frustration trying to get my son diagnosed................In the end i gave up because as someone wisley told me the diagnosis changes nothing the problems are still the same............it was the best thing i did i just walked away from the whole cahms ,specialists,peadatricians everything system and the releif was great............My recent experiance of getting back in touch with these peole has only reinforced the fact i did the right thing.In my opinion youre on youre own with aspergers and its best to get on with it the best way you can.............

 

It depends on who you see and where you see them. Thats very dangerous advice not to pursue a diagnosis.

 

[Paula]

Sorry treckster of course people need to do what they think is right for me and my son the persuite of a diagnosis was too stressfull,i also didnt want as my son got older and more aware to think i was attemting to "fix" him that i wasnt happy with who and what he was because i am..........yes i have my moments when i think why our son but there very rare and i didnt want to every six months parade him in front of drs saying whats "wrong" because i dodnt beleive theres anything wrong with him hes just different and different isnt wrong..............I hope that makes sence.

Edited December 18, 2009 by Paula

[trekster]

Sorry trekster of course people need to do what they think is right for me and my son the persuite of a diagnosis was too stressfull,i also didnt want as my son got older and more aware to think i was attempting to "fix" him that i wasn't happy with who and what he was because i am..........yes i have my moments when i think why our son but there very rare and i didn't want to every six months parade him in front of drs saying whats "wrong" because i dont believe there's anything wrong with him hes just different and different isn't wrong..............I hope that makes sence.

 

Perfect sense to me Paula, as Luke Jackson would say "different is cool". Also i don't feel a disability is a negative thing same as you prefer to call it a difference.

Some kids go throughout their lives without a diagnosis but it sounds like your son and original posters son need a diagnosis.

 

ive noticed recently that a number of "bipolar" folk have discovered they are in fact autistic. Im hoping the new NAS campaign in 2010 will find some unrecognised needs of autistics and get the authorities to understand they arent problem children but kids with real needs and talents.

 

Alexis

[shaz71]

thanks so much for the replies, sorry i havent been back on but have had ds at home due to the suspension

 

we went thru cahms 3 yrs ago and just saw a nurse who who to be frank didnt say a great deal, then we saw someone else 2 yrs ago who spent most of the time trying to recruit me as i apparently had a good parenting skills and had learnt to deal so effectively with ds that she thought i could help others!!! since then we recently saw tier 2 cahms advisor who is the one who said he 'could' be on the scale

 

the school promised behaviour support and an ed psych but this has not happened. i am due to see them again today and am going to push for this again. am also going to the dr later to ask for him to be referred and possibly to see if we can get an ADOS (?) assessment

 

trekster thankyou will look into PALS

 

shaz dont think a parenting course will help, all the people we have seen say how well i deal with ds and have things under control at home, of course thats wonderful isnt it? (sarcasm!) just cos i can keep him fairly calm at home doesnt really help in school when he explodes and then gets a suspension.

 

aaah well onwards and upwards

 

echelon sorry if i have taken over your post, maybe i should post this seperately? but i felt that are siutations are fairly similar

 

Hi Latmaz it is a shame why they fobbed you off, you obviously do a better job than the teachers do at controlling your son, so if the problem is at school why are they taking it out on you, tell them to sort it out, since he hasn't got a problem. They are always quick to blame the parent, like my daughter was struggling in school so they sent me on a mad science course to bond with my daughter, now how patronizing is that, now the parenting course, already got two older children and they turned out fine. It amazes me, yes i have picked up different types of parenting which has helped but she still is hard work, and it certainly doesn't help with my youngest, i don't know what she will be like at school yet, hopefully she may have calmed down by then she is 3 in March but she is very head strong, flapping hands and tiptoes but only on certain floorings, she screams for anything excitment, anger frustration. Very ocd, and does a lot of odd movements and noises and also hyper. Both my youngest have been diagnosed with reflux age 7 and nearly 3 my 7yr old as just been recently diagnosed as having irlens and is a year and half behind her peers, but we didn't know all this when i went to cahms it is all coming out after, so maybe they might have looked at her when all this is coming to light as irlens is connected to dyslexia, i also think she has dyscalcula which can go hand in hand with another disability and also reflux is connected as a lot of autistic people can have this. Sharon x

 

[trekster]

Hi Latmaz it is a shame why they fobbed you off, you obviously do a better job than the teachers do at controlling your son, so if the problem is at school why are they taking it out on you, tell them to sort it out, since he hasn't got a problem. They are always quick to blame the parent, like my daughter was struggling in school so they sent me on a mad science course to bond with my daughter, now how patronizing is that, now the parenting course, already got two older children and they turned out fine. It amazes me, yes i have picked up different types of parenting which has helped but she still is hard work, and it certainly doesn't help with my youngest, i don't know what she will be like at school yet, hopefully she may have calmed down by then she is 3 in March but she is very head strong, flapping hands and tiptoes but only on certain floorings, she screams for anything excitement, anger frustration. Very ocd, and does a lot of odd movements and noises and also hyper. Both my youngest have been diagnosed with reflux age 7 and nearly 3 my 7yr old as just been recently diagnosed as having irlens and is a year and half behind her peers, but we didn't know all this when i went to cahms it is all coming out after, so maybe they might have looked at her when all this is coming to light as irlens is connected to dyslexia, i also think she has dyscalculia which can go hand in hand with another disability and also reflux is connected as a lot of autistic people can have this. Sharon x

 

ive also got irlens and dyslexia as well as aspergers. Have you considered going milk free for the reflux? i get less nausea and confusion when im off the milk.

 

Alexis

[latmaz]

shaz thanks so much for your kind words. weird u say about the reflux as ds had this when he was a baby (didnt know about asp connection) he still cant take tablets of any kind as he heaves

 

he went back to school after his latest expulsion and their latest idea is that he is on report and has to achieve a certain amount of points . la la la well gosh why didnt i think of that duuuh (sorry for sarcasm but sure u know how i feel)

 

the teacher said that as ds can 'choose' where to run and hide he must be able to choose whether to lose it or not . what can u say?

 

anyway have been to dr and asked for him to be referred and approached his scout master as apparently the scouting association have access to people

 

thanks everyone again for your input

 

[westie]

Have you explained to the school how you manage your son at home? Or is it simply that for him the whole school environment is just too much (I think I read that he has sensory issues?)

With my eldest son, diagnosis was a long and frustrating process. Like your son he has signs of ASD but after a long and lengthy number of assessment, parenting programs etc. a diagnosis of Pathological Demand Avoidance Syndrome (PDA) was suggested by some people at the child development centre. At that point we were waiting to see CAMHS and it ended up with the Psychologist at CAMHS saying, 'yes PDA is likely' let speech and language deal with you as we know nothing about PDA.....

So referred to another mental health team who also knew nothing but agreed to help us and they got us a referral to a centre in nottingham who were experts on this condition as well as autism and other communication disorders. They confirmed it was PDA and gave us some excellent advice. The school has been supportive and willing to listen to us as we are to them. Despite him having bad behaviour emotional social difficulties (he is statemented, has been since starting full time school - and before any diagnosis other than EBD had been given! - so no diagnosis does not rule out him being asessed for a statement if this is what you think he needs) he has only been excluded once for one day, and we have started to see some positive changes behaviour wise. How the staff (and we) deal with him makes all the difference with my son. His current teacher who he has had since Y5 is briliiant and they have a good relationship and understanding. Other teacher start out using traditional "behaviour management" and he has had massive meltdowns. Usually things start to improve once they get to know each other and I feel that the teachers may have learned how better to manage him...

 

He still has issues mind you, and if secondary school not taking on board his diagnosis then all the progress we have made may be lost.....

 

Def. worth investigating referral to somewhere else - many children with AS/ PDA/ ASD can cope when talking to an adult (in a calm quiet environment with no distractions and little or no pressure) and may come across as very able, but you put other factors into the equation and they will see a different child.

Would the professionals at CAMHS come and observe him at school and then they may get a better idea of his 'areas of need', so to speak?

 

[westie]

his current statement acknowledges his sensory issues such as noise, crowds and being touched - especially when agitated. He once (i think Y3 or Y4) punched a TA who tried to stop him going out at playtime (he had been angry in the lesson before and the TA feared him exploding in the playground) it was not restraining or anything but I think just a brief touch but he hit out :-(

He doesnt really like being touched or hugged much -can cope if warned and he decides its okay, but it will not be for long if he does allow a brief cuddle! If he is angry or agitated and you put your hands on him even lightly you are "breaking his arm" - he was a runner when he was little and often wound up coming out of school so I always had parents staring at me while he kicked off and accused me of breaking his arm when I tried to hold his hand and prevent him running off.

[latmaz]

weirdly enough westie i was reading about PDA yesterday and thinking how much it sounded like ds. i have explained to the school in great detail at least 3 times. he is to see the ed psych there tomorrow apparently tho i assume that will be a 10min thing and not much will come out of it

 

i emailed the man at TASCC and received a reply waffling on about how he found it unusual how some teachers thought ds was wonderful whilst others thought he shouldnt be in the school he was so disruptive (he kept on about this in the meeting).. he also said this

 

" it was my view that his outbursts of temper would best be seen and dealt with as immature behaviour, and that he needs to learn that we all have to learn to deal with frustration and perceived unfairness in life and that feeing that we have been done an injustice does not entitle us to react disproportionately. It could be said that he has a somewhat paranoid response reaction which makes him feel others are getting at him, but please be clear that I use that word in it’s colloquial sense not a clinical sense. It was my view that this would best be learned through the normal systems of school and home discipline, and natural / reasonable consequences for our actions. I did not think at the time I saw him, that there was any need nor anything to be gained from my giving further individual casework sessions "

 

he goes onto say he does not see any unequivicol reason that he has any disorder but wouldnt rule it out and suggests i go back to GP (again!!!) .. round in circles