Aspergers and Autism the same in draft DSM V

[amberlight]

www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94#

The draft DSM V is now out and available on that link. Doesn't take effect until 2013 so they'll still be doing some listening and revising as they go, but they are indeed intending to drop Asperger syndrome as a separate category. They can't spot the difference between it and what they're currently calling higher functioning autism.

They say, "A single spectrum disorder is a better reflection of the state of knowledge about pathology and clinical presentation; previously, the criteria were equivalent to trying to ?cleave meatloaf at the joints?. "

A strange expression, but I think I know what they mean.

Also interesting is that they want to drop the "triad of impairments" and reduce it to two things:

1. Social/communication deficits

2. Fixated interests and repetitive behaviours

"Delays in language are not unique nor universal in ASD and are more accurately considered as a factor that influences the clinical symptoms of ASD, rather than defining the ASD diagnosis"

I knew this waslikely coming from Unilecturers.

I have some interesting research about ASd /AS and how if you remove the language aspect then they don't vary in terms of severtiy based upon DX alone (ie a child can have severesensory or behavioural issues with AS,and a child with ASD can become very borderline if the language deevelops).

I am keen on this,although I think some depts will simplu use it as an excuse to make L:D the criteria for support and pull h lp for even more,rather than making it accessible for people like us ewho have had the 'no AS' rule used against us.

Am told the language thing is also about kids who have AS and language difficulties but no specificdelays being lost in amiddlegroundwhere it is assumed there are no issues.

Amber, do you want me to email you the powerpoints from University? I think I have 4 (usually we get handouts) on sensory,communication etc- you might find them interesting, see what's being taught. I'll shove my essay in seeing as it got the top grade,though am certain you can pull apart LOL- stills links to loads of bang up to date research.

Sounds very positive Amber. DS2 might seek dx as a teenager so I am very interested.

So many mumsnetters have had their valuable time, time that could be spent with their child, wasted trying to get their heads round these incoherent distinctions.
of HFA/Aspergers, etc. Dump'em now, I say.

Also, the "triad" can't be dumped soon enough for me - and it makes DH snort - it doesn't seem to pass the mumsnet test either - very few of us seem to find it really useful. Though it does make a checklist sound objective and clever (putting things in threes, as every politician knows, is a sure-fire way to sound more authoritative).

But what about the mumsnet consensus that sensory and processing differences are at the root of ASD, and the so-called traits are merely the symptoms, not the "cause"?

Are they still ignoring sensory stuff? Why for heaven's sake? Behaviours that may be due to very specific and ongoing experience of sensory/processing differences such as face-blindness may surely continue to be wrongly ascribed to some innate "ASD personality" resulting in a failure to make the right adjustments

Ooo I'm always happy to received more info, so yes please

Lingle, looks like at the moment they are still discounting the sensory stuff. I thought so when speaking alongside SBC at a conference last year - he had a ton of slides about sensory issues but carefully avoided them all and wouldn't be drawn into conversation about it.

But...I believe they're going to do 'cluster diagnoses' in which they do something like this:

Autism with IQ of (x) in this area and (y) in that area, etc
with sensory disorder
and faceblindness
and dyspraxia
and speech delay

Or
Autism with IQ of (x) in this area and (y) in that area etc
non-verbal
acquired brain injury

etc etc.

So not putting those other things in with the autism, but making sure that diagnostic people know to check for them and they all get added into the 'needs help/treatment/support' package of care afterwards, rather than us having to see ten different professionals for ten different bits of help.

But we've nearly three years to go before we know the full answers, I guess.
with profound speech delay

That sounds like step forward Amber.

backTo

I know that the NICE committeearelooking at sensory as we speak....

It's a good move and I'm sure will benefit a lot of people who are currently losing out because of the terminology used to describe their condition.

I'm glad on a personal level it will also remove the apparent discrepancy where my non-verbal child would appear to be more severely affected than my highly articulate child, because really, he's not. He's just different and the cluster diagnoses that amberlight hinted at would reflect that.

ouryve, yup. So many parents can't get any help or insurance or anything else if someone has put "Asperger syndrome" rather than "high functioning autism" on the form, even if the two are identical in presentation for that child at that point and even if they are living in proverbial hell 24 hrs a day 7 days a week with a child who is aggressive, never sleeps, has major food issues, can't be taken anywhere or left with anyone, runs out in front of traffic at the slightest chance, etc.

And so many people on the autism spectrum are told that because they have Asperger syndrome they can only be 'mildly affected' and there therefore can't be anything really needing help, support or treatment as it's not 'real' autism. But if it's HFA, of course that counts. Weird. It turns out it's the same thing and has always been the same thing.

Things that aren't caused by the autism will be given different and hopefully more structured help as part of that assessment process, e.g. epilepsy, acquired brain injury, having a learning difficulty, being non-verbal, dyspraxia, ADHD, sensory issues. So parents and individuals will hopefully get proper tailored support after 2013.

ourvye our experioence is similar-ds3 is now verbal but with very obvious speeh issuesandin an SNU but the day to day struggle is with the one with AS: ds3 isadream,if an atypicaldream,toparent.With ds1you don't know if you'll get hugged,s worn at or thumped!.

Amber off totry andlocate your email now.If there's a ny links you can't accessin the refs part ofmy essay just holler and I willseewhat I can do.

It's a bit vague isn't it?

I still think a clear understanding of subgroups would be more useful than an ever broadening and lumping in of everything very different together. I don't really agree that " A single spectrum disorder is a better reflection of the state of knowledge about pathology and clinical presentation" EXCEPT at the high functioning end. I don't think that's true of the more severe end at all.

I am ha ha ha - ing that CDD has gone in with autism etc though, given the fuss that was made of Wakefield using CDD and autism interchangeably that at the GMC trial.

That is a bit suss isn't it Mrs T?

I imagine that the most severe children will be known as ASD with LD, and that will be the qualifier forreapite etc- as fast as the system tries to mofify the servicesadapt to prevent access. I do like the fact that HFA and AS won't be separated- the fact that ds1 didn't have a speech delay at 3 is now insignificant when most of his HFA peers have caught up anyway. The genralideaof ASthough beleis the 3 hour meeting with the LEA,and clearly the LEA know nowt as the woman turned to me afterwards and said 'He'sbright isn't he'- er yes, why wouldn't he be? Just becuase the school set up prevents him demonstrating it in tests,doesn'tmean it isn't there()and I am praying she listened to the subtext, where every attack ds1 makes was described by him instead as 'people annoying me' or our panel bid in 6 weeks is a waste of space).

IMO the real signifier is whether LD is present or not,and the childs functional IQ. That imo is a far bigger signifier of long term needs than language at 3.Not that anyone has ever assessed ds3's functional /adapttive ability mind- when he eventually reaches the care system they will be making noises about how they never knew he existed and it is their own doing.

I agree that AS and HFA should be together but I do think a distinction needs to be made wrt severity.

Agree that LD's is a huge issue. IQ is a tricky one as it's often impossible to asses, so I never think it works that well for this group.

I suppose I think there is a difference between the HFA/AS that is beginning to be fairly well understood (broader autism phenotype in families/multigenes) versus everything else with a label of autism which is a huge mish mash of different conditions (some of whom may have a HFA dx but present slightly differently). I think the spiel around this represents one particular group and not the others.

I think the danger of this sort of definition is that anyone who doesn't fall into that HFA/AS/ BAP in families group is going to be forgotten. This has issues for education & research (big issues for research) in the main and also people trying to access resources from for example the NAS (which as you know I think serves the non HF end very badly at the moment, or doesn't serve as the case may be).

The existence of those with severe autism without a broader phenotype in the family etc etc is already barely recognised in the research literature, I'm not sure that this will help.

If it comes with a strong reminder that autism has many different aetiologies maybe it will be OK

Indeed.

If it results in a proper set of tests with proper help and support all round afterwards, that'll be a result worthy of a wild party.

Maybe the fault so far has been that it has all typically been lumped into the word 'autism' or 'aspergers' and there hasn't been any understanding that the LDs or language delay/absence or epilepsy or sensory issues or dyspraxia or ADHD etc can in themselves also be mild/moderate/severe and require their own levels of intervention and support.

We need really tailored support levels for each family and each individual, and this could be a good start IF they manage the severity/comorbid stuff well.

Professor Gilberg (my only claim to fame is meeting him at dx) said similar - underlying IQ is what will determine long term outcome.(not meaning child will have easy life with high IQ though) . DS1 had no sensory issues at dx (3.6) though has an irritating string flapping thing now. I've noticed in NAS magazine that non verbal/severe autism is often qualified with phrases such as 'primary diagnosis is autism' or 'autism accompanied by other difficulties.'

I'm not entirely sure it's the IQ that's the problem though. If you take someone like my ds1 his IQ in unmeasureable as he will not co-operate in testing. However his IQ is not a problem as such. He is great at problem solving the problems he wants to solve and so can stay on task for (such as where we've hidden the apples/how to make someone open a door on false pretences/how to get to something out of reach) and has a phenomenal memory. His main problem is probably over 95% of what he does is involuntary and he has no control over it. It has to be a very strong stimulus (such as searching for a hidden apple) to override the invountary behaviours. If your body is constantly reacting to external stimuli in ways that you have no control over then it's not surprising that you have a learning disability and can't demonstrate your intelligence. It's not the IQ that is at issue though.

It's that group that is pretty much ignored ime. And many of the professionals have very limited understanding of this group.

Actually I have thought of a way to define the spectrum that works across the whole spectrum- and that is to define it in terms of sensory processing. The HFA/AS group tend to have issues such as hyper/hypo sensitivity, the group I described above have more complex sensory issues. I heard Temple Grandin describe it as 'just a total mess'. There's been one paper published (hard to work with this group) which suggested that one sense can override all others. So if you are looking at something and hear a sound for example then you can no longer see, feel or smell the object until the sound finishes...... The whole spectrum appears to commonly have problems with motor planning and initiation- although again these appear to often be more complex in the severe group.

So I propose scrapping DSM V and producing something based on sensory processing. It would be more use for understanding the indvidual needs as well.

It'll never happen of course, but would perhaps be nice to see it considered more. I did hear the sensory processing would make it into DSM V but apparently not. Shame I think it's more use in understanding autism.

bethnoire I'll have your power points.(cheeky bugger emoticon) Have an essay to be in at Easter and haven't even started it. [sob]

can I ask about criteria 1 on the proposed draft? Does the child have to meet all points a, b and c?

Haven't read all of his although heard about HFA/AS/Kanner's being turned into one ASD iyswim. However, I understood from some very senior NAS people, although a couple of years ago now, that they are keen on extending the Triaf to a Quadrad(???) to include an extra section for sensory impairment.

Pipinjo, they're not saying a word about what they will finally do with sensory issues yet.

Cornsilk, I believe they do have to meet all points in (1), but it doesn't mean they get to fail the diagnosis if they have a single friend etc - it's all judged on whether what we can manage is 'normal' or not.

"1. Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following:

a. Marked deficits in nonverbal and verbal communication used for social interaction:
b. Lack of social reciprocity;
c. Failure to develop and maintain peer relationships appropriate to developmental level

1. Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:

a. Stereotyped motor or verbal behaviors, or unusual sensory behaviors b. Excessive adherence to routines and ritualized patterns of behavior c. Restricted, fixated interests"

Thanks amberlight
How common is it for children affected by ASD to have 'friends' do you know?

I heard that as well Davros. I heard it at IMFAR too but it doesn't look as if it will. Personally I think that's a mistake.

Comments on the age of autism blog are all pretty negative about the changes - from both those dealing with AS and those dealing with the severe end. Main reason seems to be they're different, so recognise the diversity rather than lump different things together. A lit of age if autismers see many autism cases as something that can be treated biomedically whilst AS often can't. I suppose that's the same as my point about autism caused by many genes with the BAP present on family members versus the rest (lots of different causes) .