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.

I think IQ is a bit misleading, tbh. J's is fine but kind of useless as his sensory and behaviour stuff is so severe, plus has crap self-care skills. At this rate, he won't be able to live independently, despite being academically OK.

Glad they're simplifying things though.

Am I being stupid - the link in the OP does mention sensory issues, so why are people talking about them being ignored?

what's CDD?

(I need to stop skim-reading just cos I'm tired)

Well, thinking about it I'm glad they're simplifying the distinction between HFA and AS, as they do seem interchangable, but still think different levels need achkowledging somehow, in learning, behaviour, sensory issues etc. Maybe (like J would be) autism with no learning difficulties, severe behavioural issues and severe sensory issues type dxs. I dunno. Current system too postcode-dependent ime.

Oh I missed the sensory line - bit vague though isn't it - I mean I think that ds1's sensory challenges are do much more than hypersensitivity (mind you this is barely recognised by the research community because you can't test people like ds1 so it's not a surprise I think).

I was thinking of your son ( and children I know like him) when I was thinking about IQ tests. I suppose in your son's case his IQ over-predicts his coping ability whereas in my son's case the apparent low IQ reflects lack of functional ability but actually highlihhts the wrong reason (iq not being the reason - it would be a lot easier if it was).

It depends what a dx is being used for. A simple approach is perhaps useful when dealing with LA's but you need a more diverse approach when considering education, treatments and research.

My email is peaches and cream 04 @ bt internet dot com, anyone is welcome to them, we've not been tolsd not to distribute them after all LOL

The aldy from NICE told us sensory was up for being included, I dont think the decisions have been amde.

I do think sensory is it- ds3 has HFA really, he is bright, his sensory isues are going to stop him being out there in this lifetime. He is mainly hyposensitive- so much so they let a klaxon off next to him and he didn't seem tonotice. Yet other times a noise comes and he is in the corner. His hyposensitivity causes him to tune out agreat deal: if you have an IQ of 130 (he's untestable, gets distracted) it doesn'tmatter if yuou've tuned out does it? he's just not there.

i think they need tolook at what is meant by severe:ds3 is not severe compared to MrsT's child and many others, and someservices here areonly forsevereasd- all the asult ones. yet if you can never become independent, what is that? A passing phase? Technially ds3 won't be entitled to anything at all in the way of residential, I fully expect to diewith him sat next to me having never had a single day off. That's going to be our reality.
DS1 is mostlikely going to end up within the provinceof MH (his eating disorders ahve finally descended to the point of anaemia and fainting fits) but heaven knows where ds3 will end up, I don't even want to think about it tbh.

i've also got a link to thequadresearch somewhere if anyone wants it.

Surely he will come under learning disability beth? Ds1 doesn't access anything via his autism (although it prevents access to lots of things) he accesses everything through Learning disabity - and they use a very broad definition.

Giveme - sorry cdd is childhood disintegrative disorder. It was a big part of the case against Wakefield. He included people with regressive autism in his research when his ethical approval was for cdd. He argued they're 'indistinguishable when the child is young but the GMC disagreed.

Ahhh...cheers saintlydame. I agree totally about IQ over-under predicting. You put it better than me though

Peachy, would ds3 be in a strong position for services with him being in a unit? Some services seem to be easier to access when they're in special/ units rather than m/s.

over / under

Thing is every child with language delay / processing difficulties has a LD at least at age 2-3, but some of the children the language / processing will improve at say age 5+ and they would not then be classed as LD. I think really any 3 year old with autism dx (under present rules) has LD via language / interfering behaviours. But some children do seem to find a way to deal with these better than others (perhaps due to underlying IQ / type therapy etc).

DS is Kanners autism but actually very mild under section 2 - little sensory / no routines; lots of stims but then he can't talk / play / make friends so in a way what is he supposed to do but stim? If he gets language / social skills / play skills I hope the interfering behaviours will reduce. So he doesn't really fit section 2 in the way described but he had massive autistic regression so is so obviously ASD.

I guess he is severe under s.1 and mild under s.2

This is such an interesting thread - not sure if I am being a bit thick but does anyone know what will happen to our DC - will they have to go through a diagnostic assesment again or will their current diagnosis still stand once the DSVM criteria is revised?

No the diagnosis will stand Eveie -although presumably if it was for AS it would become autism.

The more I think about this the less I'm convinced really. What is the purpose of a diagnosis? If it's to provide a signpost for teaching/treatment or research then I'm not sure that treating a diverse group as one is much use to anyone.

If it's to access services then I can't see it will make much difference. DS1 does access quite a few services. He doesn't access any of them because of his autism diagnosis. He accesses them because he has LD's. The only autism specific services locally are autism outreach - for children with ASD/AS diagnoses in mainstream, that'll continue the same. Then courses and an after school club run by the NAS- all open to those with AS/HFA only (specified in that way).

I can't see what will change in terms of service provision (and that's the only potential benefit I can see to combining everything).

I've nicked cut and pasted the comment below from comments on the Age of Autism blog, I think it sums it up for me:

"Is anyone who has trouble walking classified as a high functioning paraplegic with a "mobility spectrum disorder"? Umbrella terms seem to be a convenience, and buckets like these may not be for the benefit of the patient, IMHO - regardless of which end of the "spectrum" you end up on. Broader categories can become an even greater obfuscation (or worse, more of an excuse) in terms of (not) investigating / identifying root cause and appropriate course of action, on an individual basis.

Just my 2c..."

thanks bethnoire - I will email you if that's okay
I've chosen to focus on how families are affected when a child has ASD for this piece of work. Do you have any recommendations for books/online articles etc that I could look at?

His letter of dx states he has no LD, thats what they go on. At some point we aregoing yto have to take action but it will very likely be the battle of my life. I need to get ds1 sorted first- the extra provision, and then the place at the AS unit. I try to take things one step at a time or I go under with the paperwork! I do find with two plus an sen that I have to be careful or it gets too much- the SEN is obv nothing in comparison but still the blasted IEPs,exxtra work etc,and now they want him on a programme. All well and good, but....

I absolutely agreee with thesensory, it should be included.

I think I'd have lessissue with the AS /ASD thing if there wereacknowledgement that there is such a thing as severeAS, ATm there is a schoolof thought IMO influenced by the neurodiversity monvement that works against that- ds1 is not neurodiverse, he has a disability that affects allareas of his life,not as much as others of course but it does have a big negative impact. I've encountered a few like him on MN recenlty and that's been great becuase at one point I thought we were completely alone with this kid who didn't really fit anything out there- walking into the AS unit helped as well. And that research I keepbringing up that asd and as differ only by langauge, the severity of other aspects of symptamatology varies without regard for dx throughout the spectrum. None of the MS kids with autism
I know need to have every meal recorded in becuase they stop eating, has the behavioural aspects we do, the stims and phobias (it is a phobia that causes his sleep issues, a phobia of being alone). If a child with an Autism dx had such a presentation around here they'd get an LRC place easily, and I do feel ds1's AS paperwork worked against that. Obviously therealasnwer is towiden service access, but that isn'tgoing to happen and I know the ideabehind this si to force service providers intoassessing actual need.I am not sure it willwork but it is an aim I applaud.

Yeah, for me this is where this social model of disability thing falls down. As you say, peachy, it's not a neuro-diversity 'society oppressing Aspies' thing - it's a disability which prevents, in our boys' cases, an easy pigeon-holing or an easy life. Sad but true. Our boys are so similar and yet have different dx's. Poscode lottery again. Pysch adamnt J couldn't have AS as was too severe and no early lang problems. But the outcomes later on do definitely level out, AS/ HFA.

In areas such as here where (wrongly) they classify anyone with low-ish ADOS scores as AS which they write on every AS report is 'a mild and subtle form of autism'. Garrr. Far better to get them all looking at their DSM again - think some have forgotten it!

Agreeing, givememoresleep. DS1 is extremely intelligent, but is really struggling with behavioural and sensory issues, right now. We're awaiting a secondary diagonosis of ADHD and whatever alphabet soup our local CAMHS can come up with, right now, but even if we manage to chemically control that side of his problems, we're not exactly confident that he'll be the next Sheldon Cooper, no matter how good he is at maths. (Level 3b in year 1, for what good it does him)

Mrsturnip - I'm going to say it's a silly analogy. Age of Autism is not a site I consider to speak for me on autism issues, I'm afraid. Most of what I've read there is bordering on the hysterical.

Also adding to my previous post that you simply can't ignore or wish away the diverse spectrum thing. To clarify my first comment in this thread, yes, DS2 is non verbal and has various motor delays, so is clearly behind his peers and qualifies as LD because of all that. He is the sweetest boy, rarely tantrums (unless I dare to give him a sandwich instead of toast!) and is a dream to parent. DS1, apart from his early selective mutism which made him non verbal in unfamiliar environments is highly articulate. His social communication is crap, though and he is a nightmare to parent because he is destructive and has really low impulse control. I have a friend whose son the same age is very similar to DS1, apart from the way he uses language, though his social communication is still obviously impaired. He's recently been diagnosed with AS. Both my boys have an official diagnosis of "autism"

Now which of these kids should be excluded from the autistic spectrum because it shouldn't be too diverse?

I don't think either should be excluded from a diagnosis, I think a diagnosis should reflect a child's needs. I don't see how putting everything under one umbrella term does that. If you put children who have a type of AS that you see running through families (and that does exist - and is fairly well understood now- probably the best understood) in with autism that results from some sort of exposure to a virus during pregnancy which 'primes' the child for a later autistic regression (again a form that is beginning to be understood) along with a child who regresses following mild motor delay because of a mitochondrial disorder, along with a child who has very severe gut problems - in terms of research and treatment - then calling them the same thing does not help.

It has become very clear that autism is not one thing. It's about the one thing that people agree on, so it seems strange at a time when that is being recognised - and we are getting to a stage where some of the different subgroups can be identified - to downplay the differences.

In terms of teaching my son it doesn't do really to think oh he's just like a child with AS but with learning disabilities. He's not. He experiences the world (in sensory-motor terms) in an entirely different way. Again it's a shame that doesn't recognise it.

But that's why I asked- what's the point of a diagnosis? If it's to assign resources then I don't see that it will make much difference as autism doesn't get any resources anyway.

Beth- ds1 didn't have a diagnosis of LD's - I don't think he's ever been given one officially - it's prob been mentioned in an annual review (none were apparent as a pre-schooler - he passed that side of the 2 year check), but it hasn't prevented him accessing an SLD school. Access to services for him altered when he moved to an SLD school, but probably has more to with the fact he couldn't access any of the ones designed for children without learning disabilities. (And the ones designed for kids with learning disabilities and challenging behaviours don't start here until age 8).

Maybe someone can explain to me why they should all be lumped together?

I can understand that HFA and AS may as well be included together as there's often little to distinguish the two (although in part that might reflect dodgy diagnosing - I've met a number of kids dxed with AS who would have suited an autism dx more I suspect). But why not try and recognise the different etiologies now we actually are beginning to be able to? What is gained by ignoring that?

If people think it will help access services I am fairly sure it won't. I was thinking how ds1 accessed his services and it was nothing to do with his diagnosis. First he was given access to an inclusion playscheme. That blatantly didn't work, so he was offered a SN playscheme. I refused that because there were no locked doors and I pointed out that if he got out (and he would without locked doors) then there's a busy road outside and he would be run over. So he was given access to the one service that provides locked doors and 1:1 as standard when out. But that had nothing to do with his diagnosis- it wasn't even mentioned. It was to do with his functioning. Other children who access the service range from non-verbal with SLDs to verbal with MLDs, to verbal with probably no LD's at all. Diagnoses vary- but all need very, very high levels of supervision and so cannot access anything else on offer in the city.

I think perhaps that they wanted to strip it back to the absolute basics, e.g.

"What is it that is found in every single autistic individual?"

Inability to use social communication stuff (not able to see or interpret or use non-verbal stuff to good effect) is certainly very characteristic. So are obsessions and needs for routine.

Maybe it's because sensory issues aren't always there, nor the low IQ, epilepsy, face blindness, dyspraxia, being non-verbal, ADHD etc - they're all additional things that build up to a whole picture and really add to the level of disability and need, but aren't the core things that occur in everyone with autism?

As for services, ultimately it's money and politics that controls that. I don't know why. Why isn't it done on need? Perhaps that's a very aspie sort of lack-of-understanding-of-why-the-world-works-that-way.

Will be continuing to campaign for access to the right services and support for each and every child and family.

I can see why that simplifies diagnosis. But I'm not sure it benefits the individual. Even routines etc are not always there - ds1 didn't develop any until he was of school age (but the clinical psych said that she felt that was normal when she saw him aged 2- that routines come later).

I suspect that everyone no matter their position on the spectrum (or diagnosis- sure it's the same with others) gets the minimum they can cope with.

Done on need would be ideal, but would need a shift in attitudes where money was taken out of the equation. Actually our last SW was very into need and argued on the basis of need - but I think she is quite rare

I have been having an interesting discussion in my head though about diagnosis and the point of it. Clearly for something medical like cancer then a diagnosis specifies a treatment, but autism is different - although there may within autism be those who would benefit from a medical approach.

Interesting isn't it? I am going to read up on politics of diagnosis I think and have a ponder. I suspect it's meant to aid in accessing services, but I actually don't think it does.....