Back from private assessment - not asp

[Nora]

Hi,

 

We are back from our assessment and my son does not fit the profile of Aspergers. His verbal IQ was scored in the top 1% which I guess explains the incessant talking.

 

He scored in the top 25% of some of the other tests and poorly on the visual spatial (maths and spelling).

 

It seems that his eccentricity and creativity have been mistakenly seen as being signs of asp. I too have fanned the flames. It has caused a lot of worry.

 

Thank you so much for taking the time to answer all my questions.

 

Nora X

[baddad]

Hi Nora -

 

I know that this is sort of what you wanted to hear, but I'm sorry it doesn't answer any of your questions/concerns for you.

I'm not sure about his high verbal IQ being an explanation for his 'incessant talking' (I think it's more an indication of vocabulary and processing/reasoning than 'words per minute' iyswim), but don't have any other suggestions about that. Maybe it's a 'nervous tension' sort of thing, and if he feels particularly confident verbally but less confident in other ways maybe there's some sort of over-compensation factor going on? I think this applies to many people (I know it can me in some situations) that they are so uncomfortable about 'pregnant pauses' in conversations they just fill any gaps with whatever comes out of their mouths! I think this sort of 'gabbling' can be autism related (particularly if it's on a 'pet topic' and seems generally unrelated to anything else that's going on) but there are loads of other possible causes too, and i guess the more verbally confident someone is the more likely it is to emerge as a (n albeit problematic) 'safety net'.

 

Know good at Mathes and speling? Shameful!

 

Hope whatever is going on (if anything) that you/he find some answers soon, and it is more than possible that he has some 'traits' - which pretty much applies to everyone! Just his traits may be a bit more 'traity' than some other people's, iyswim, in a swings and roundabouts sort of way...

 

L&P

 

BD

[Karen A]

Hi,

 

We are back from our assessment and my son does not fit the profile of Aspergers. His verbal IQ was scored in the top 1% which I guess explains the incessant talking.

 

He scored in the top 25% of some of the other tests and poorly on the visual spatial (maths and spelling).

 

It seems that his eccentricity and creativity have been mistakenly seen as being signs of asp. I too have fanned the flames. It has caused a lot of worry.

 

Thank you so much for taking the time to answer all my questions.

 

Nora X

 

Hi Nora.

Please don't feel bad about it.At least you considered the possibility.

As I mentioned on your other thread it can be difficult to distinguish between children with AS and children who are very intelligent especially if they are not well understood in school.Intelligent children sometimes find it difficult to socialise with peers because they just have different interests.They can also spend all day asking questions.

Until Ben was four we shared a house with an adult friend of ours.So Ben had a lot of adult input with three involved adults in the house.For a long time it was thought he was a bright boy who had had a lot of adult input.As it turns out he is an extremely intelligent young man who also has AS.

A couple of teachers at open evening last week said that if they do not keep an eye on themselves they can end up having a discussion with Ben that is over the heads of the remainder of the class.

 

It might be worth keeping an eye on how your son progresses in maths and with spelling.

 

I can recommend a very good book.

''Gifted young children'' by Louise Porter.Published by Open University Press.It has some helpful chapters on emotional issues,self-esteem and social isues which detail why these areas can be difficult for children who may be gifted and talented.

Karen.

Edited February 2, 2010 by Karen A

[justine1]

Hi Nora

At least it has put your mind at rest.My eldest is also extremely intelligent,three years above his actual age,parents evening is a little boring,its always "Josh is excellent at maths"" excellent at art" etc. As mentioned above he has also had many issues socialising,clever kids seem envious of him,too competitive and average kids seem to think he knows to much and cant relate to him.He also has a strong personality so likes things done his way or no way at all,he can be argumentative to even with adults.In som ways he has many characteristics which may be seen as ASD traits.However he is completely different to Sam who has got AS.

 

Sam has advanced speech,he started talking early and he can say extremely long words,but he doesnt know meanings and cannot always pronounce basic words correctly.

 

Was it just one appointment and how long was it?I just feel sometimes people seem to go for 1 hour appt,in my opinion its not long enough to give a dx. But at least you know now.

Iwish you and your son well for the future <'>

[Nora]

Thank you so much for replying.

 

I am coming down from the initial relief and realising that we still have the same kid as yesterday - as I would have done if we had got a positive dx. Badad, I think you could have hit the nail on the head with the incessant talking being a nervous type thing. The EP brought this possibility up as well. And, he came out of school last week and launched into a huge monologue on collector cards to an unsuspecting parent. Today in the assessment, he reminded me of Eddie Izzard! He was leaping around and gesticulating and going off on wild tangents - even the doc was laughing. It was quite barking! All very good but not sure how it all fits with the norms of school.

 

Thanks Karen, I will definitely be keeping an eye on things. He is officially over a year behind in his writing and I don't want to see him put in a low ability class etc. He was put on a low ability table at his last school which was gutting. In his assessment today, he was given sums like 4 minus 2 and he was adding them and getting 6.... just not looking properly! I will definitely look out the book you mention. Thank you.

 

Nora X

[baddad]

Today in the assessment, he reminded me of Eddie Izzard! He was leaping around and gesticulating and going off on wild tangents - even the doc was laughing. It was quite barking! All very good but not sure how it all fits with the norms of school.

 

 

Nora X

 

None of that did Magnus Pike or Patrick Moore (or even Eddie Izzard) any harm in the long term, did it?

 

L&P

 

BD

 

 

[wasuup]

None of that did Magnus Pike or Patrick Moore (or even Eddie Izzard) any harm in the long term, did it?

 

L&P

 

BD

 

 

Nora was it the EP who said that he didn't have Aspergers or a consultant paediatrician or psychologist. It is possible to have a non verbal learning difficulty whereas someone can be very verbal and seem to have a good understanding of language. However they may have visual processing and spatial awawreness difficulties which could account for your son getting confused with his maths symbols. I would keep an eye on things just in case as suggested.

[Nora]

The guy who did the assessment is a Chartered Clinical Psychologist, and heads the

Department of Paediatric Psychology at big city hospital. His areas of expertise include asp and autism. I hope that fits the bill? He's going to write a full report for us. At this moment the anxiety of the past 5 years has lifted. The teacher that told us that they thought he might have asp 5 years ago unleashed years of worry.

 

Only those of a certain age can remember Magnus Pike!

 

Thanks, I will definitely keep an eye on things.

 

Nora X

 

Mother of Magnus Pike II

[bid]

Just a thought, Nora...

 

My eldest son's NHS assessment took 2 plus hours at the diagnostic centre with a team of professionals (consultant in paediatric disability, child psychologist, SALT and art therapist), then a school visit and a home visit, before a final dx was agreed (AS and ADHD to add to his existing dx of dyspraxia). This was 13 years ago. His little brother went through the whole CDC assessment which had subsequently been introduced 5 years ago: again, this involved two home visits, a nursery visit, SALT assessment and then a final clinic appointment to bring all the information together (in his case, no he wasn't on the spectrum).

 

I'm not trying to criticise private assessments, but do worry that they don't perhaps examine the whole development of the child in as much detail, involve as many different professionals or over as many sessions.

 

Bid

Edited February 2, 2010 by bid

[JsMum]

The most important thing is that you have got some answers and you have done the assessment to look towards getting something sorted out for school, its highlighted his Maths and Writing, so hopefully now he will have support for that.

 

Is the report going include any further assessments/follow up appointments, and will it include any recommendations for support at school.?

 

If it that he is anxious when communicationg, look at stratagies that help a person relax, som relaxation techneques.

 

Is it reliefe now you have an answer? are you still glad you went throw the assessment?.

 

JsMumxxx

 

Edited February 2, 2010 by JsMum

[Karen A]

Thank you so much for replying.

 

I am coming down from the initial relief and realising that we still have the same kid as yesterday - as I would have done if we had got a positive dx. Badad, I think you could have hit the nail on the head with the incessant talking being a nervous type thing. The EP brought this possibility up as well. And, he came out of school last week and launched into a huge monologue on collector cards to an unsuspecting parent. Today in the assessment, he reminded me of Eddie Izzard! He was leaping around and gesticulating and going off on wild tangents - even the doc was laughing. It was quite barking! All very good but not sure how it all fits with the norms of school.

 

Thanks Karen, I will definitely be keeping an eye on things. He is officially over a year behind in his writing and I don't want to see him put in a low ability class etc. He was put on a low ability table at his last school which was gutting. In his assessment today, he was given sums like 4 minus 2 and he was adding them and getting 6.... just not looking properly! I will definitely look out the book you mention. Thank you.

 

Nora X

 

Hi again Nora.

It sounds as though the psychologist suggested yesterday that your son has an uneven profile and is very able in some areas.However he is behind in terms of his writing.

I had not realised that he was so far behind.

Even though the psychologist does not think your son has AS it is still possible he could have other specific learning difficulties.

Have you thought about going through your GP to request a multi-disciplinary assessment regarding ASD .

 

I think bid has a very good point.The assessments offered by CAMHS or CDT now usually follow a set framework.They always involve more than one professional.The team includes a medical professional [psychiatrist or paediatrician] and a SALT.Assessments cover not only ASD but also dyspraxia and other possible social,medical or emotional causes of any difficulties.There is a specific document relating to the assessment process which I will try and find.It gives a good idea of the process.

 

It took professionals three years to decide on a diagnosis for Ben [AS].Even now they do not all agree.

Karen.

 

 

[Karen A]

http://www.dh.gov.uk/dr_consum_dh/groups/d.../dh_4090571.pdf

Hi.

This is the document I mentioned in the previous post.It is an exempler which gives an idea of the sorts of professionals involved in the assessment process and the areas that they would look at.It is based on guidance within the National Service Framework for children and maternity services.

Karen.

[Nora]

Thanks again for your advice. I wonder if I should email this guy and ask if we need to be referred elsewhere. It will be interesting to see what the report says - I got the impression that there would be recommendations for school but this wasn't clarified. I hope that for our £££ we will get something comprehensive. I wish now I had asked more questions. He kind of said that the spelling and maths problems would become less important as he grew up and that they had Profs there who couldn't take away at a darts game so perhaps he did not see the problems as being severe. He seemed to be a top dog guy so I would imagine that he would have referred us on if necessary. And, fair play to the guy, the cheque was made out to some hospital foundation trust type thing rather than to his personal bank account.

 

I am certainly very pleased that we went. We have some answers!

 

Still taking in all in...

 

Thanks, Nora X

 

PS. Thanks for link Karen

Edited February 3, 2010 by Nora

[Karen A]

Thanks again for your advice. I wonder if I should email this guy and ask if we need to be referred elsewhere. It will be interesting to see what the report says - I got the impression that there would be recommendations for school but this wasn't clarified. I hope that for our £££ we will get something comprehensive. I wish now I had asked more questions. He kind of said that the spelling and maths problems would become less important as he grew up and that they had Profs there who couldn't take away at a darts game so perhaps he did not see the problems as being severe. He seemed to be a top dog guy so I would imagine that he would have referred us on if necessary. And, fair play to the guy, the cheque was made out to some hospital foundation trust type thing rather than to his personal bank account.

 

I am certainly very pleased that we went. We have some answers!

 

Still taking in all in...

 

Thanks, Nora X

 

PS. Thanks for link Karen

 

Hi again.

Do you know that your GP can do a referal to CAMHS or CDT ?

That would not cost anything.

The psychologist might think there is no need to refer elsewhere but he may not be right.

 

In the past three years we have been seen by three CAMHS consultant psychiatrists ,two CAMHS psychotherapists ,a specialist SALT and an OT.

The specialist SALT said that Ben had AS following an ADOS.

Two consultant psychiatrists said that Ben has AS.

One consultant psychiatrist said that Ben did not have AS.

The OT said that if Ben had AS she would discharge him because she only supports children with dyspraxia.

One consultant psychotherapist said for three years that Ben did not have AS but then changed her mind.

One CAMHS psychotherapist still believes Ben does not have AS.He accepts that Ben has some AS features however he thinks that by the time Ben reaches adulthood he will no longer meet the criteria for dx.

We know all of the team very well and they are all very good indeed.But professionals do not always agree.That is why having a team of professionals can be useful.

 

[Nora]

Thanks Karen, I will definitely be looking into it all. There is obviously a huge discrepancy between his test results. I think I will wait till I get his report and then email doc with any queries. And we have a meeting with EP in a month. Parents Eve is coming up soon as well so I hope they will now do something to encourage the "high verbal IQ" side of things.

 

I wondered if you had seen the book "Misdiagnosis and Dual Diagnosis of Gifted Children and Adults" by James T Webb (and others. A couple of interesting quotes:

 

Since people with Aspergers Disorder function at an average or above average intellectual level, it appears that there may be a true relationship between Aspergers Disorder and giftedness.

 

It can be difficult to differentiate between some gifted children and children with ASP. In fact, there may be a graduation, rather than ASP being a discrete category. That is, there may be increasing degrees of characteristic behaviours that end up with an impairment that is then called ASP.

 

Cheers, Nora X

 

 

[wasuup]

Thanks Karen, I will definitely be looking into it all. There is obviously a huge discrepancy between his test results. I think I will wait till I get his report and then email doc with any queries. And we have a meeting with EP in a month. Parents Eve is coming up soon as well so I hope they will now do something to encourage the "high verbal IQ" side of things.

 

I wondered if you had seen the book "Misdiagnosis and Dual Diagnosis of Gifted Children and Adults" by James T Webb (and others. A couple of interesting quotes:

 

Since people with Aspergers Disorder function at an average or above average intellectual level, it appears that there may be a true relationship between Aspergers Disorder and giftedness.

 

It can be difficult to differentiate between some gifted children and children with ASP. In fact, there may be a graduation, rather than ASP being a discrete category. That is, there may be increasing degrees of characteristic behaviours that end up with an impairment that is then called ASP.

 

Cheers, Nora X

 

 

We had 3 professionals in the room at CAMHS they all agreed that our son would be assessed and that they would do the ADOS with him.

My daughter has a specific learning difficulty in Maths and it affects many aspects of her life not just the subject at school. Have you heard of dyscalculia? She is above average with her English and understanding of language.

[puffin]

Just a thought, Nora...

 

My eldest son's NHS assessment took 2 plus hours at the diagnostic centre with a team of professionals (consultant in paediatric disability, child psychologist, SALT and art therapist), then a school visit and a home visit, before a final dx was agreed (AS and ADHD to add to his existing dx of dyspraxia). This was 13 years ago. His little brother went through the whole CDC assessment which had subsequently been introduced 5 years ago: again, this involved two home visits, a nursery visit, SALT assessment and then a final clinic appointment to bring all the information together (in his case, no he wasn't on the spectrum).

 

I'm not trying to criticise private assessments, but do worry that they don't perhaps examine the whole development of the child in as much detail, involve as many different professionals or over as many sessions.

 

Bid

 

Yes we had a very full work up here in Sweden as they carried out an open minded diagnostoc assessment - in total it took around 20 hours:

- paeditrician assessment

- 5 psychologist visits of 2 hours each with ADOS and other testing intelligence testing

- an OT assessment

- a physiotherapy assessment in the gym to check motor skills etc

- a SALT assessment including a bilingual assessment

- a special ed assessment in basic age expected study skills

- 2 or 3 school visits by the special pedagogue

- a home visit

- questionnaires completed by teacher TA and parents

 

It was very detailed and di show an uneven pattern

 

She scored very highly relating to IQ

 

 

But hope that the report you have had done will help you find some answers and identify where tha problem lies

Edited February 3, 2010 by puffin

[justine1]

Yes we had a very full work up here in Sweden as they carried out an open minded diagnostoc assessment - in total it took around 20 hours:

- paeditrician assessment

- 5 psychologist visits of 2 hours each with ADOS and other testing intelligence testing

- an OT assessment

- a physiotherapy assessment in the gym to check motor skills etc

- a SALT assessment including a bilingual assessment

- a special ed assessment in basic age expected study skills

- 2 or 3 school visits by the special pedagogue

- a home visit

- questionnaires completed by teacher TA and parents

 

It was very detailed and di show an uneven pattern

 

She scored very highly relating to IQ

 

 

But hope that the report you have had done will help you find some answers and identify where tha problem lies

This definatley sounds good,probably seemed long and that it would never end at the time,but thats really thorough.I think with that sort of assesment everything is covered so if there is additional problems it will be found out at the same time rather than a year or two later,as in a neighbours case,her little girl was dx with speech problems 3 years ago now she has been dx with two more severe develpment problems.She is annoyed that nobody picked it up all these years.So I think if the above was offered here these situations will be avoided.

[Mandapanda]

Just a thought, Nora...

 

My eldest son's NHS assessment took 2 plus hours at the diagnostic centre with a team of professionals (consultant in paediatric disability, child psychologist, SALT and art therapist), then a school visit and a home visit, before a final dx was agreed (AS and ADHD to add to his existing dx of dyspraxia). This was 13 years ago. His little brother went through the whole CDC assessment which had subsequently been introduced 5 years ago: again, this involved two home visits, a nursery visit, SALT assessment and then a final clinic appointment to bring all the information together (in his case, no he wasn't on the spectrum).

 

I'm not trying to criticise private assessments, but do worry that they don't perhaps examine the whole development of the child in as much detail, involve as many different professionals or over as many sessions.

 

Bid

 

Interesting - with my eldest we had about 1 1/2 hours with Consultant Psychiatrist at CAMHS. With my youngest we had 2 hours with Paediatrician (who is (or was) also the School Doctor). No home or school visits and no other people involved. I already suspected my eldest had AS and some years later it was confirmed by another Psychiatrist after a 6 week social skills course at CAMHS, and I have no doubt at all that he has AS.

 

With my youngest, I knew he had traits but a completely different profile (and personality) to the eldest. What he does have is Severe Anxiety - which I believe makes it very difficult to do an accurate assessment of him and his abilities/disabilities. He would probably need the much more comprehensive assessment Bid talks about to find out what is really going on with him. Sensory issues were not really looked at, and I believe he has more of these than my eldest, and with the anxiety they are his main problems.

 

The trouble is our CAMHS service is hopeless and has been for some years. They just don't offer a comprehensive service - your child has to be suicidal to get an appointment, or severely affected by OCD or something else specific. It is shameful that we can't all be offered the same thorough service (even what Bid was offered 13 years ago!).

Edited February 6, 2010 by Mandapanda

[Kathryn]

My daughter had a 4 hour assessment with an educational neuropsychologist and then another couple of hours with a consultant psychiatrist - both experts in ASD so we were sure they would hit the mark first time if she met the criteria. That was sufficient, but then she was 15 and so possibly easier to diagnose as there was plenty of history and she could cooperate fully during a lengthy assessment.

 

I'm not suggesting everyone should wait till their child is 15!

 

K x