"Autistic Traits"

[KateBall]

Its just that this issue still bothers me and I can't get it clear in my head. I have posted previously about my ds who has been diagnosed with a "communication disorder" which is accompanied by "some autistic like traits" - but they won't diagnose him as having an asd because he is too "sociable". I just can't help feeling that they are simply getting all these diagnosis wrong - their criteria must be wrong. How can you have autistic traits and not be autistic? I just don't think the "spectrum" is inclusive enough?

 

Mumble I hope you read this because I know you have something to say about "autistic traits" and I would very much welcome your views on it? Sorry if you would be repeating what you may have said before. Its just I want to tackle someone about something to do with ds and his so called "traits" and I want to be clear in my head about what I should be saying. I've always thought he is asd but I am going through a crisis of confidence right now having come up against so many brick walls

 

In my head I keep thinking that he is or has a condition/disorder:

A. which has a name but no one has twigged it relates to him (some sort of syndrome that exists but is pretty much unknown unless you happen to have a professional who knows enough about it and will diagnose a child with it)

B. which doesn't have a name and therefore doesn't exist yet because the criteria for diagnosing asd's doesn't encompass all types of disorder and his (and I suspect many other children's) disorders are going ignored / unlabelled / uncategorised as a result or

C. which is a communication disorder, because they can't think which category he precisely fits and so that's the name they come up with instead.

 

Sorry folks I'm just going through such tortuous processes in my head. Just hope someone here can make sense of what I'm trying to say and perhaps give me a view so I don't have to keep talking to myself about it

[Tally]

It's infuriating not having a clear diagnosis. It doesn't help you to understand his needs, and the risk is that his difficulties will be seen as "mild."

 

This is how I see it: The diagnostic criteria are indeed not inclusive enough. Your son does not meet the full criteria for diagnosis of autism, even though he is probably on the spectrum. I've heard Pervasive Developmental Disorder used to define atypical autism, or where the person does not meet the full criteria for autism.

[pearl]

If autism is a spectrum, then the way I see it, its v difficult to draw a line, this person is on the spectrum, this person isnt.....

 

Mr pearl (and he agrees with me wholeheartedly & wont mind me saying any of this) has "autistic traits", as have most of his family to a greater or lesser degree. His sister self-dx'd herself as AS after JP's dx. We are fairly sure his uncle lived his whole life as an undx'd Aspie.

 

But I wouldnt say that mr pearl is AS. He has none of the sensory issues, for instance. He doesnt overload & meltdown. He does however have the single mindedness, special interests, lack of desire to "fit in", difficulty in expressing emotion etc, along with dyspraxia as a comorbid.

 

I am not FOR ONE SECOND minimising the difficulties that AS peeps face on a daily basis, or "diluting" AS-ness. But it makes complete sense to me that, if several members of one family are dx'd, there's probs a genetic component, & the others may also be affected to some degree.

 

Put it this way, JP is in an extended family who understand him very well indeed

 

"Autistic cousins" is another phrase I've heard.

[KateBall]

It's infuriating not having a clear diagnosis. It doesn't help you to understand his needs, and the risk is that his difficulties will be seen as "mild."

 

This is how I see it: The diagnostic criteria are indeed not inclusive enough. Your son does not meet the full criteria for diagnosis of autism, even though he is probably on the spectrum. I've heard Pervasive Developmental Disorder used to define atypical autism, or where the person does not meet the full criteria for autism.

 

Yes Tally I think thats my uppermost thought. Another awkward word too "mild" - what is that? You see if he is "mildly" autistic then actually that creates even more problems for him because by being so - there are greater expectations of him to conform to "normality" and when he doesn't do so and there is no obvious disorder looking you in the face - then his behaviour is even more put down to discipline issues and his needs are not being met in the way they should. So being "mildly" afflicted/affected actually leads to more difficulties than if he were obviously on the spectrum.

 

PDD - I've seen used mainly on american websites but not as much here in the UK and not by the professionals in this area. The whole labelling system is very confused. When is it Jam and not Jelly, when is it butter and not margarine?

[TuX]

Yes Tally I think thats my uppermost thought. Another awkward word too "mild" - what is that? You see if he is "mildly" autistic then actually that creates even more problems for him because by being so - there are greater expectations of him to conform to "normality" and when he doesn't do so and there is no obvious disorder looking you in the face - then his behaviour is even more put down to discipline issues and his needs are not being met in the way they should. So being "mildly" afflicted/affected actually leads to more difficulties than if he were obviously on the spectrum.

 

PDD - I've seen used mainly on american websites but not as much here in the UK and not by the professionals in this area. The whole labelling system is very confused. When is it Jam and not Jelly, when is it butter and not margarine?

some adults with aspergers call themselves "mildly autistic" or that they have "mildly autistic traits",people usually blame doctors for calling it mild whereas it is what some people on the spectrum refer to to,they then exclusively call aspergers mild,usually they haven't had any experience with aspergans who are on the severe end or auties.

this is the problem with those who are higher functioning regardless of label,people always think its 'mild'.

 

 

if someone has enough autistic traits,and does not fit kanners or aspergers criteria,it is possible they have PDDNOS [not otherwise specified],and sometimes,PDDNOSers can have more severe traits than aspergans,but just don't have enough of them to be diagnosed under one of the other asd labels.

it might be worth seeing if PDDNOS applies to son or not.

[paulathomson]

my ds has just been dx'd with As and he is very very sociable.. could you ask to see a different specialist?

[KateBall]

Tux - yes I think pddnos probably a good description but really that is a cop out as well isn't it - in other words we know its something but not sure what. In any event the term has not even been mentioned round here in our area with the so called professionals.

 

Paula - I'd be interested to know how your ds was diagnosed. Through the CAMHS team or some other way. What criteria did they / the specialist use? Do you know?

[pearl]

JP is sociable too, it seems a bit simplistic to refuse a dx on that basis. He loves chatting, family gatherings, the social side of office life like eating out.... where he differs is that he doesn't really know how to make & keep friends, its all a bit superficial.

[jlp]

I have another social Aspie here - he has friends and likes (some!) people.

 

I always thought that while you can get children with asd who are social - it's more how appropriate those social skills are. Eg a child who runs and hug strangers is social but that isn't appropriate. Does that make sense - I'm finding it hard to say what I mean.

[shortcake]

Since Ryan was diagnosed I have thought about that this alot. I am sure that I have a few traits, I dont like going places I have never been and get very anxoius about it not to the point and often try to make excuses so that i dont go. I also find it difficult to make eye contact and to start conversations with people. I wouldnt say that I am AS or ASD but i def have a few "traits" if that is the right way of putting it

[KateBall]

In our meetings they did not differentiate between the type of sociability - it was simply about whether or not he socialised. As he did (albeit in a different way) then he cant be asd.

 

 

Shortcake you've got me thinking now. I can recognise traits in my ds that I have. In the immediate family (my nt dd in particular) - she jokes that its not surprising ds is like he is. But then should you and I be on the spectrum somewhere if we have some traits. Don't know. I just know that it feels a bit like the cut off date for school entry when you know they're ready for school but can't go because they aren't old enough. Bad analogy perhaps but hope you know what I mean. I just agonise so much about what to do. I think I'll carry on in my belief that ds is either something I don't know the name for yet or he would be on the spectrum if it wasn't so exclusive.

[paulathomson]

Tux - yes I think pddnos probably a good description but really that is a cop out as well isn't it - in other words we know its something but not sure what. In any event the term has not even been mentioned round here in our area with the so called professionals.

 

Paula - I'd be interested to know how your ds was diagnosed. Through the CAMHS team or some other way. What criteria did they / the specialist use? Do you know?

 

im not sure of all the technical criteria..it was camhs.. i think it helped because i kept diaries for about a year of all his behaviuor and what he says etc. but he is very very sociable.. i think that because he will hug strangers and and interrupts strangers/friends/neighbours etc he can be too sociable..inappropriate and that has something to do with it.

he can have his moments where he will refuse to speak/co-operate with say dentists/schools but in the main he is sociable.

[maisies_mummy]

Hi all, just been reading through your posts and thought I would add that CAMHS have said my daughter has AS traits and is overly sociable so think it must depend on who sees your child to be honest. I also asked about PDD and was told that it is not used as dx in england????? Mainly in Australia and USA. Maisie had scored mild on an online PDD test so mentioned it at a meeting. Maisie has friends at school, but not certain friends of that makes sense? she floats around with everyone lol.

 

This all confusses me to be honest, but her daddy came out of a meeting and said he thought he had AS lol and to be honest I think I would agree lol.

[baddad]

Hi all -

 

'traits' & 'mild' - completely baffling terminology and I wish they'd stop using it...

The difficulty is that diagnosis of AS/ASD doesn't conform to the 'tick box' sort of measurements that other conditions do, and given that it is a 'spectrum' or continuum the cutoff points are even less clear...

What would help is if they could come up with some clear definitions of what does and doesn't constitute ASD/AS, and some more appropriate terminology when those definitions aren't all present.

At the moment, the individual elements of the triad could apply to certain areas of anyone's personality - AS or NT. The key differences lie in degree & presentation etc, and the personal interpretation of what those factors mean by the particular consultant concerned.

I don't know how it could be achieved, but there needs to be some sort of universal agreement on where a particular dx applies and how that is measured, because if the professionals can't agree on what 'ASD' means what hope in hell has a parent got of getting the non-professional world to respond appropriately (and by non-professional I mean LEA's/teachers/LSA's - i.e. non-medical support networks who's first hand experience of autism may be no more than a one day course and a dvd of Rainman)?

On the other hand if we apply the terms too loosely (and already we start to see it creeping into everyday language as a 'verb') we run the risk of diverting support away from those who need it most - and already we have Social Service departments up and down the country making the arbitary decision that 'ASD' = Support while 'AS' = Doesn't

 

 

L&P

 

BD

[Cariad]

My view on it is you either have ASD or not! I think it's Doctors etc not wanting to make a clear diagnosis and go through the process of another statement! I think it's mean as if you aren't properly diagnosed you won't get the right help.

 

For example my son almost four years ago had the diagnosis of tourettes and "Autistic tendencies". Which didn't help us as he had no help as he was AUTISTIC ..

[Mumble]

My view on it is you either have ASD or not!

Ditto.

I've been so good trying to keep out of this thread

I think the reason some people may present with traits (as opposed to being diagnosed with traits for funding reasons - that's a whole other game of ball in the park ) is:

a)they are ASD but for whatever reason have had to act more 'NT', fit in etc. This applied to me growing up.

b)they are not ASD but just representing the range of individuals you get in society (in the same way that ASD individuals are individuals) - they may have one aspect of behaviours considered with the 'triad' for all manner of reasons, but autism is a complex picture which has to be looked at across a person's life. For instance you could consider all PhD students to be obsessinal as they study their favourite narrowly defined aspect of a subject in detail for at least 3 full years. Such obsessional interest could be considered as a behaviour associated with ASD but that doesn't mean all PhD students are ASD because looking at that one aspect fails to look at what else they are doing in their life. Sorry, probably not a good example, I'm just wittering away.

[pearl]

Yup, thats kind of what I was trying to say about mr pearl & his family Mumble - some clearly AS, dx'd or not, others with "traits" but nowhere near the full triad, does that make sense?

[KateBall]

I've had too much of this tonight to know what the heck everyone's on about. Thanks for the replies will study them tomorrow. Hick

[krystaltps]

Tony Attwood referred to this at the talk he gave (the one I went to last May), and he actually drew a really good analogy. He said to think of the spectrum as a jigsaw puzzle consisting of 100 pieces, with each piece representing a trait. The people most affected would have 90 - 100 pieces of this jigsaw (that's your profoundly classically autistic people); Aspies would have around 60 - 80 pieces of the jigsaw and most people in society would have about 10 - 50 pieces. That's why each person on the spectrum needs to be considered as an individual - as there are so many combinations of pieces, therefore everyone presents differently. He also stated that it only becomes a "syndrome" when the combination and amount of jigsaw pieces affect the quality of the individual's life, make them vulnerable or unable to cope within society independently.

I have used this analogy myself ever since when meeting people or considering my son and my family. I'd say C probably has about 70-75 pieces, DS2, R, probably has about 55, and I consider myself to have about 50 -55 as well. Many of the pieces C does not have are the ones that R and I possess, and because these pieces have a lesser impact on our abilities, our quality of life is not affected and therefore we do not have a "syndrome".

I've probably not explained it anywhere near as well as Tony himself did, but that's the general idea, and I think it's a really good way to think about the spectrum as a whole. Perhaps this analogy should be part of the dx process and criteria as well.

Edited September 29, 2007 by krystaltps

[KateBall]

Tony Attwood referred to this at the talk he gave (the one I went to last May), and he actually drew a really good analogy. He said to think of the spectrum as a jigsaw puzzle consisting of 100 pieces, with each piece representing a trait. The people most affected would have 90 - 100 pieces of this jigsaw (that's your profoundly classically autistic people); Aspies would have around 60 - 80 pieces of the jigsaw and most people in society would have about 10 - 50 pieces. That's why each person on the spectrum needs to be considered as an individual - as there are so many combinations of pieces, therefore everyone presents differently. He also stated that it only becomes a "syndrome" when the combination and amount of jigsaw pieces affect the quality of the individual's life, make them vulnerable or unable to cope within society independently.

I have used this analogy myself ever since when meeting people or considering my son and my family. I'd say C probably has about 70-75 pieces, DS2, R, probably has about 55, and I consider myself to have about 50 -55 as well. Many of the pieces C does not have are the ones that R and I possess, and because these pieces have a lesser impact on our abilities, our quality of life is not affected and therefore we do not have a "syndrome".

I've probably not explained it anywhere near as well as Tony himself did, but that's the general idea, and I think it's a really good way to think about the spectrum as a whole. Perhaps this analogy should be part of the dx process and criteria as well.

 

OK I'm sober now so have read through comments and krystaltps this one is brilliant. I think I can agree with Tony Attwood and see what he means. The only problem is that in practice its not like that is it? The spectrum doesn't include all the jigsaw pieces - it only includes the ones the professionals decide to put in there. I agree that this analogy should form part of the dx process it would certainly make more sense. If this were used on my ds then I think he would have at least somewhere between 60-80 pieces and it would be considered that he has a syndrome because it does affect his life. However with the diagnostic criteria we had to go through - and I think many others have to go through - if one aspect on the criteria list was not present or "suffered" then they ignored the existence and impact of the rest and gave him no diagnosis and simply consigned those to the label "autistic traits".

Thank you so much krystaltps - it has made the situation more clear in my head. I'm going to look more into what Tony Attwood says. You see the problem I have here is that I could put my ds through countless reassessments and the same answer would come up each time - because they use the same checklist which discounts anyone who is remotely sociable (albeit in a nt way or not) and they expect me to put up with this idea that he has "autistic traits". If I want my ds to have the label which I know in my heart of hearts that he "deserves" I either have to persuade them to use a different criteria or find someone else who does. And I think that is the crux of all our problems - there is confusion and inconsistency in the diagnostic process. I know if I lived in another part of the country my ds would be diagnosed as on the asd. Round here not so. I also know that in this part of the country it is almost impossible to get a statement. And I'm beginning to realise that this attitude to diagnosis / statements and funding is all linked.

[darky]

I know I am late on this one. I have 3 children, all dx with something different! My girl, who I would consider to be the most affected,Or the most jigsaw pieces as Tony Attwood explained it has a dx of PDD-NOS. My youngest son has a diagnosis of Aspergers, he is sociable, but usually with much younger children and on his terms. He is the only one to meet the criteria of a specific ASD. My eldest son has a diagnosis of "mild pragmatic language disorder" Dyspraxia, and consultant said he has traits of an ASD but not enough to be considered for a diagnosis. He has instructed the school to use teaching methods appropriate for AS if the "traits" become a problem BUT his diagnosis of Dyspraxia is his main diagnosis.

 

The consultant explained it like this, he said that everyone has "traits" its only when those traits are "severe" enough that they warrent a full diagnosis. I find it confusing.

[KateBall]

I know I am late on this one. I have 3 children, all dx with something different! My girl, who I would consider to be the most affected,Or the most jigsaw pieces as Tony Attwood explained it has a dx of PDD-NOS. My youngest son has a diagnosis of Aspergers, he is sociable, but usually with much younger children and on his terms. He is the only one to meet the criteria of a specific ASD. My eldest son has a diagnosis of "mild pragmatic language disorder" Dyspraxia, and consultant said he has traits of an ASD but not enough to be considered for a diagnosis. He has instructed the school to use teaching methods appropriate for AS if the "traits" become a problem BUT his diagnosis of Dyspraxia is his main diagnosis.

 

The consultant explained it like this, he said that everyone has "traits" its only when those traits are "severe" enough that they warrent a full diagnosis. I find it confusing.

 

Thanks Darky. Very interesting that you have such varied diagnoses. I think I have missed out as well by not having any decent explanation from the so called professionals. I think they must all have a "communication disorder"

[lisa35]

same for my 12 yr old, "traits" for goodness sakes, everything we do is recommended for kids on spectrum & works

I think a lot of is dependant on whats "fashionable" to dx, ie at momnet, people are scared to dx adhd,add,etc because of the bad press

I agree, the terms are bandied about too freely at times, however, doesnt help us lot

What do we tell people??? Without looking like we re making excuses? Part of me wants reassessment, but I know son has had enough of being prodded and poked

Lisa x

[lisa35]

Mumble-----this is my son,soon as he gets through the door he acts more asd type!!!!! Yet ,when with others he acts "normally"----whatever that is!!!!

Ditto.

I've been so good trying to keep out of this thread

I think the reason some people may present with traits (as opposed to being diagnosed with traits for funding reasons - that's a whole other game of ball in the park ) is:

a)they are ASD but for whatever reason have had to act more 'NT', fit in etc. This applied to me growing up.