NVLD or Aspergers, NHS or private! Help!

[kasia]

Hi there,

 

I'm Kate and I'm mum to 9 year old Adam.

 

I've always thought he had Aspergers to some degree. All his teachers have picked up on the usual traits etc, and I've been on the NHS waiting list for a long time.

 

Last year he had to move from his state infants school to a much larger local junior school which doesn't get good Ofsted reports. I made the decision to send him instead to an independent private schol as I was concerned he would get 'lost' and bullied in the other school. As part of this I had him assessed by a private paediatrician as I didn't want to move him from his school friends and create more problems. The consultant diagnosed NVLD which obviously I hadn't heard of and there seems to be very scarce information in the UK.

 

He's getting on fine at the new school but with the usual social problems (personal space for other kids, spatial awareness, inappropriate calling out in class ), but is behind in English. His teacher says she knows he has the ability, but just doesn't have the handwriting skills to get his thoughts down on paper. She says that an NHS diagnosis would be important as they could then give him more leeway on assessments - as it's a selective school this will be important when he reaches year 6 to get into the upper school.

 

I have an NHS appointement on Friday - should I tell the consultant about the private NHS diagnosis or not do you think?

 

Many Thanks

 

Kate

[Kathryn]

Hi Kate,

 

Welcome to the forum.

 

You're right that NVLD is little known in the UK, it's much more of an American label with little pockets of awareness in other countries, eg. Holland.

 

When she was 11 my daughter was privately assessed by an Educational psychologist who noticed issues with non verbal tasks and communication, but didn't mention Aspergers or the Autistic spectrum at all, so this didn't occur to us as a possible diagnosis. Instead over the next few years we researched and acquired a lot of information about NVLD and were amazed to se how clearly she appeared to fit that profile - it seemed the perfect explanation for all the issues she had had over the years. We printed off and gave her form tutor lots of information on NVLD and my daughter herself enthusiastically embraced the label herself at first.

 

However we found that this little known label was not helpful when it came to getting extra support. It was only when she she got the diagnosis of AS at 15 that the lights of recognition went on and everyone, i.e. health and education professionals, knew what they were dealing with.

 

From what I remember of my reading (and correct me if I'm wrong) people with NVLD have all the communication, sensory and organisational difficulties you would expect in someone with AS, however they are apparently seen as too socially oriented and able to qualify for a diagnosis of AS. At first I agreed with this, because of my limited understanding of Asgerger Syndrome and ASD - and my reluctance to believe she had anything associated with autism (she wasn't like the couple of autistic children I had met!) Now I believe NVLD is just a different facet of AS, perhaps at the highest of the "high functioning" end of the spectrum and not a separate condition at all.

 

Those are my thoughts, for what they're worth. To answer your question above, although private diagnoses are helpful (my daughter had 2 independent ed psych assessments) an NHS diagnosis is usually necessary as well if you want any help from the health and/or education sysytem, now or in the future. Unfortunately there still lurks a certain amount of (usually unjustified) prejudice around privately commissioned reports which stems from the belief that people will say anything if you pay them to, so an NHS dx can carry more weight in certain situations e.g. when applying for an SEN statement.

 

I would be inclined to mention the private report on Friday although the consultant may not endorse the NVLD label and will want to do their own assessment, s/he will hopefully take on board what has been said about your son's difficulties by the previous consultant and of course yourself before deciding which, if any, label fits your son.

 

K x

Edited September 13, 2011 by Kathryn

[Mumble]

From what I remember of my reading (and correct me if I'm wrong) people with NVLD have all the communication, sensory and organisational difficulties you would expect in someone with AS, however they are apparently seen as too socially oriented and able to qualify for a diagnosis of AS. At first I agreed with this, because of my limited understanding of Asgerger Syndrome and ASD - and my reluctance to believe she had anything associated with autism (she wasn't like the couple of autistic children I had met!) Now I believe NVLD is just a different facet of AS, perhaps at the highest of the "high functioning" end of the spectrum and not a separate condition at all.

I can't remember where I found this, and I recognise that it is a major over-simplification, but I think it's quite useful. I did have a Venn diagram somewhere showing how HFA/AS/ASD/SPD/NVLD all fitted together with social on one axis and communication on the other, but I can't find it...

 

NVLD is determined by neuropsychological testing, whereas Asperger’s is determined by detailed history and observation. There is great overlap in these two conditions—perhaps due to co-morbidity; or perhaps, as some authors feel, they are essentially the same condition but labeled by different specialties. However, Asperger’s is most primarily notable for not appearing interested in forming human bonds. [The degree to which Asperger’s kids actually are painfully aware of their trouble making bonds is debated in the literature. Nevertheless, they typically appear uninterested.] NVLD kids, though, do typically appear interested in human bonds--even though they may be clueless how to actually achieve them successfully. Additionally, children with Asperger’s more typically have diminished “symbolic play” than in NVLD. For example, the toy school bus is a box that rolls, rather than something that little plastic figures climb into.

 

So, how about this for a gross oversimplification? NVLD kids recognize that you exist while they miss the subtext of what you are saying. Asperger’s kids appear behind a plane of glass as they miss the subtext of what you are saying.

[baddad]

Asperger’s is most primarily notable for not appearing interested in forming human bonds. [The degree to which Asperger’s kids actually are painfully aware of their trouble making bonds is debated in the literature. Nevertheless, they typically appear uninterested.] NVLD kids, though, do typically appear interested in human bonds

 

Interestingly (possibly?) - this is a distinction Ros Blackburn has made regarding autism and asperger's - that autistic people just aren't that interested socially other than indirectly whereas people with AS are... never having heard of NVLD before (and being somewhat wary of the ever-expanding terminology that's arising from ever expanding definitions), it's interesting to see this in terms of a 'continuum of a continuum of a continuum', iyswim(?).

 

It may, however, be useful in diagnostic terms - once definitions are precise enough to make differentiation possible - for separating what I have occasionally previously described - for want of another term - as 'New Variant Asperger's' from what I (and the DSM criteria up to this point) have always considered Asperger's to mean. I think that distinction is a very important one - for autistic people and Asperger's/NVLD(?)alike, and it does worry me that proposed changes to DSM will will blur the boundaries even further rather than defining them... In terms of that venn diagram mumble mentioned, we're soon going to have one bl00dy great big circle that encompasses everyone -and I do mean everyone - which would be fine if society wasn't made up of subsets and cliques and prejudices and fashions and..........

 

L&P

 

BD

 

PS: Sorry, kasia, that's slightly off topic... I'd agree with Kathryn that you should mention the existing dx at your appointment, along with any other information you've gathered that can inform them. I think full holistic assessment and disclosure is a hugely important part of dx - including all those factors that have nothing to do, on the surface, with autism or AS like family make-up and dynamics, social networks, health issues etc. A professional can only work with the information they're given (and some limited opportunities for observation), and if that information is 'filtered' for any reason they're more likely to reach the wrong conclusions.

 

HTH

 

L&P

 

BD

[Mumble]

In terms of that venn diagram mumble mentioned, we're soon going to have one bl00dy great big circle that encompasses everyone -and I do mean everyone - which would be fine if society wasn't made up of subsets and cliques and prejudices and fashions and..........

Oooh, no, that would be great. We could even make it 3D and interactive. We could perhaps have one giant sphere that included almost everyone (let's for the sake of labelling call it 'Earth' ) and then everything else could float around inside it on giant bubbles/land masses of various sizes (have you seen those ones kids can play in to walk on water that I'm not at all agrieved that they won't let adults in... ). (Let's call the masses continents). These bubbles could then interact at times with some joining together and other spliting apart over millions of years and occasionally there could be a big uproar (let's call that a volcano) which turns what was once considered an insignificant hill into a mountain or a decision to loose some land masses altogether (let's call them earthquakes).

 

I'm off to patent my model of geological autism before some big-wig gets his/her hands on it and tries to develop and push it and sell their pop up books on it on Amazon...

 

Oh yes, and the advanced model does come with satelittes and additional planets for those who don't fit the giant sphere.

 

 

 

 

p.s. do you think I should cut down on the and happy pills? :lol:

[bid]

Can it sparkle too, please?

 

Bid

[reikimum]

Hi Kate

 

I'm new here so hope nobody minds me jumping in! My daughter is 11 and was diagnosed with Nonverbal Learning Disorder around 6 months ago by an NHS Psychologist. We are also waiting for ASD assessment. Personally I don't see what seperates the two. I see you have an NHS appointment today, hope it goes well. Probably too late but I would mention the private diagosis.

 

L x

[kasia]

Hi Everyone,

 

Thank you so much for all of your advice. I did mention the private NVLD diagnosis to the NHS consultant. She was rather sceptical abour it saying that Adam does not 'necessarily have NVLD and it could be a spectrum of other conditions'.

 

She did offer lots of advice though and said that she would write to the school to encourage them to let him have extra time in English assessments etc and that the school should be implementing this already even without a diagnosis, which I was surprised at!

 

Will keep you posted about how I get on

 

Many Thanks again

 

Kate

x