Move to take AS out of the autistic spectrum

[amynnixmum]

I go to an AS/ADHD/ASD support group and this week the leader told us that there is a move to take AS out of the autistic spectrum. Apparently this is happening at a national level.

Has anyone else heard about this and what do people think? I'm worried that it will make it even harder for us to access sevices than it already is.

A clinical psych I met last week was talking about this. He wanted dx criteria to be rewritten, because he felt that at the moment it is sometimes difficult to dx someone as being on the autistic spectrum even though they had a lot of features- because they don't tick ALL the boxes (he was particularly taking about children who have all sorts of mixes going on- dyspraxia, ADHD etc autistic feqtures). He was concerned that without dx they receive no services, but that whilst they had SN that needed to be recognised they didn't really fit completely the diagnistic manuals- and so couldn'tbe diagnosed accurately. A paed present agreed.

He also felt that it was very hard to do sensible research when the dx of autistm didn't really tell you very much- it was such a mish mash of people with all sorts of different concerns.

I tended to agree with him. I think the problem really is less about dx (I personally think that AS and ASD are very different, and have vbery different needs that have to be addressed) and more about how services are dished out in this country.

I haven't heard anything about it but the cynic in me can't help wondering if this is a cost-cutting measure. I suspect access to services would be reduced even further, on the grounds that AS is somehow less serious than ASD.

HFA and AS are so similar that even the Paeds at our CDC use the terms interchangeably. I suspect that if this went ahead then sympathetic Paeds would simply change the dx to HFA so that parents could access services, and everyone else will be left to get on with it.

It's a bad idea IMHO.

DX are always being re-written (they're "false" categories anyway, would be better if categories could fit children rather than children having to fit categories). What's needed is a change in the system so individual needs are recognised rather than labels iyswim. The paed and psych I spoke to were keen for a change to result in more help and recognition for high functioning individuals, not less. Trouble of course is explaining that to the poIiticians.....

This is really interesting. My ds, age 4, was dx-ed with AS last year. He was dx-ed by the senior SALT in our borough (who specialises in ASD) because our paediatrician was on long-term sick leave. We saw a different paed the other day for a follow-up appointment, and she told me that paeds in this area don't give AS as a diagnosis. So if he had been seen by the doctor, he would have been given an official dx of ASD. So it is only by pure fluke, and because of the particular person he saw, that he has a 'label' that will now be with him for the rest of his life.

I asked the paed why he qualifies for a full dx of AS when he doesn't meet the DSM IV criteria (eg. no routines/rituals) and she just shrugged her shoulders.

Don't know what to think now.

can asnwer that becca- because without a dx (say a dx that was somehting like taking language literally and a list of problems, or a dx of say autistic tendancies, or even PDD) he would get no help- it's that that needs to change.

That's worrying. Where has this come from, the DOH? The cynic in me says it is a money saving exercise on the belief that AS is somehow a 'milder' version of ASD and needs less resources. Our paed now uses the term ASD (qualified as HFA if necessary) regardless of where the child is as he feels that this diagnosis will command more help and resources.

Doesn't make sense though as AS is still an ASD based upon the triad of impairments. The whole diagnostic and labelling thing is a bit of a mess anyway. A condition that presents in so many different ways with such differing needs depending where you are on the spectrum yet all get lumped together with the same diagnostic label. Yet splitting it into Kanners vs Aspergets autism misses out the whole group of children who fall somewhere between the two. Others believe that talking about autism as a spectrum is inaccurate that the arbitrary division into high and low functioning doesn't exist and ignores the fact that some children will move back or forth along the spectrum over time. That's why taking AS out of ASD is ludicrous, I've heard of children origninally diagnosed with autism being re categoried as AS as they get older and vice versa. If AS is no longer an ASD you are going to have some children jumping on and off the spectrum. Are those moved off it thus cured??????

Agree the point about help being targetted towards need rather than label. There seems to be whole group of individuals in that grey area between ASD and NT with a smidgeon of dyspraxia, dyslexia or ADHD thrown in whom are 'lost' and get no decent support. Problem is there simply aren't the resources. Autistic Outreach here would implode if they had to take on children with autistic tendencies. The package of help we got was initially based upon DS's needs and a diagnosis was irrelevant but as he approached school age is become apparent that this would not be the case once he started school and last autumn I was getting increasingly worried that the input we were getting would be withdrawn. Thankfully we got a diagnosis and with it we've opened more doors but it's sad really that had to be the case

Anyway I'm widely digressing from the OT!

Lx

Yes, see what you mean jimjams - guess it happened other way round for us because he was put on a sort of 'provisional' dx of autism which was then altered when we got to the official dx a year later ....so he's had quite lot of help luckily. That is probably precisely why he's made so much progress.

We are about to move house, and it really does make it so much easier to be able to say to his new nursery, and new school that he'll be starting at in Sep, that he has a dx of AS. In general they know what you're talking about and have the means to deal with it. A more wishy washy dx - even PDD - would cause problems I think.

I agree with LL's point about what would/could happen when children move along the spectrum. As a toddler I would say that ds1 was probably in the moderate area of the spectrum. At 5 he is at the mild end. If he were to be reassessed at 7 he could well be classed as AS.

I also agree that it's a shame resources seem to depend on the dx rather than the child's needs. Ds2 has been getting a lot of help since getting a provisional dx of ASD. No firm dx means that we would be likely to encounter more brick walls when ds2 reaches school ages. Thankfully ds2's Paed has now agreed to make the dx official.

Ds2 is one of those children who is mixed up with some autistic tendencies, definite dyspraxic tendencies and a few other problems thrown in for good measure. We have been lucky to get quite a lot of support although it took a while to come. However we do get sent or told to do things aimed at specifically at autistic children which are often not that effective for Ds2. For example they are keen that we should use PECS and visual timetabling. But if I show Ds2 a symbolic picture of something he often doesn't know what it is until I explain it verbally. He seems to have a lot of problems with visual processing. So a strategy that works well for many ASD children is not really suitable for him. Whilst it is definitely awkward for him not having a diagnosis I would not be happy for him to have an ASD diagnosis as I feel this gives a misleading picture of his needs.

AS is continually portrayed in the media as being less of a problem than it really is and therefore I suspect that separating this from ASD would be to try and reduce resourcing on the basis that these children don't need as much help .

The other issue I have with diagnostic procedures in this country is that you are given an dx of asd/autism/AS etc. and even with dx still have to battle for help, particularly with the HF end. But also that the dx often covers more co occuring disorders eg dd has SID, low muscle tone in joints, sleep disorder, biomedical probs etc but you are sent away with all these issues lumped under one dx and usually not offered any specific professional help to address the other problems, ie O.T., SID integration, sleep therapy, dieticians etc. We have been extremely lucky to get our paed to refer dd at age 10 to an OT who specialises in SID, but that is only because we pushed for it to be addressed as a separate dx. If you sit down and think about it logically we have such low expectations in this country because of the crappy system. Makes me so we have battled for so long with so little input.

Saker with reference to what I said last week (are you R?) if so can I email you?

Saker a lot of autistic children have problems with the symbolic side of PECS to begin with. Pyramid have lots of advice on ways round that (basically start with photos or if that doesn't work things like frdge magents stuck onto card if that doesn't work then the real objects). It's a common problem they should be able to help.

Hi Monica, yes you can email me, I am R , that would be lovely.

Jimjams - maybe I'm missing the point but it seems pointless using a picture that he isn't interested and can't interpret to tell him we are going swimming when if I just say "we're going swimming" he can understand it. The portage worker and the SALT gave up a mini-visual timetable of activities because he never took any notice of it. Although the Salt couldn't even be bothered to get hers printed so it's not surprising he couldn't understand her felt tip scribbles drawn in the car before she came in.

I have made him some photos of activities like hand washing to help with his sequencing. He likes looking at them and talking about them, but it's difficult to say that it has helped him with the activity and he relies very much on the verbal to understand what is happening in the picture.

oh OK I thought you meant PECS as in used for requesting rather than visual timetables. Might be something to come back to in the future as often children become more anxious about routines as they get older - according to ds1's clinical psych- which turned out to be true in his case.

Anyway if you're having those sorts of problems I'd still recommend asking pyramid for advice, they've talked about ways round that particular problem at every workshop I've been too, never paid much attention as it hasn't been a problem for us, but I understand it is a common one.

I suppose ABA matching programs could help as well, not really an expert but I'm sure there are others on here who would know more.

The Socail Worker here told us a few weeks ago that AS doesn't fir their spec for support above the level of holiday club, so I suspect that this is all part of a cost cutting measure like some others say.

DS1 didn't fit all the categories at his last assessment (rather he did but he ahd to demonstrate it as our word wouldn't be taken ofor it, and he didn't say anything demonstrate his language irregularities). We've had to fight long and hard to get another assessment (btw tomorrow) and I'm pretty sure we'll get a no help scenario again, we've already been tipped off by SW that the paed we are seeing isn't the only one to DX AS anyway.

So do i presxume we'll get a no on the support groups, ASD cinema mornings, school that SW suggested that specialises in ASD if this goes through? So there wuill be nowhere left for DS1 then .

I think the NAS would fight long and hard over AS being removed from the spectrum. There has been talk on and off over the years of having two societies and the conclusion has always been that they should serve and support everyone on the spectrum. These discussions have involved some of the more active Aspies! The NAS is also very aware that it can be extremely difficult to access services for people with AS and no learning disability and this is something they are trying to address and constantly have to take issue with in various forums (OK, I know its fora!).

Thanks for the advice Jimjams, I hadn't heard of Pyramid before.

They invented PECS (well kind of, formalised it and got the training etc sorted) so they're the people to ask Type in pyramid UK pecs into google and you'll find them.

Saker - I know what you mean. DS2 only seems to take notice of images he knows the words for anyway. Doesn't seem to be a visual learner in that way - though he can recognise books and videos from their spines . We are trying PECs again - didn't have much success last year. Mind you, we haven't had any training, apart from v basic given by SALT. Going to apply for course at Sussex University on June 19/20 - details on Pyramid website.

PECs is no good unless you do it really properly and follow the "rules". Like many families, we attempted it once, did a bad job of it, it didn't work and we let it slip. We went back to it some time later, had training, followed the manual and it has been a godsend. I think its very common to make two attempts before getting anywhere.

I did get invited to go on a PECS course but in the end turned it down as I felt it wouldn't help us and didn't like to take someone else's place for the sake of it. But I hate turning any offers of help down so I have to convince myself I did the right thing.

Ds2 has such trouble organising himself as well, he would be on ages trying to find the right card, dropping the others etc. Also he has a good vocab and can ask for what he wants, but because his speech is unclear I can see that they thought it might help at school when people don't always know what he is saying.

I have just dug this out of my piles of stuff.

This is a newish diagnostic tool that has been tested to be at least at accurate as the way dx is done now. This is a computerised assessment questionnaire. It is called The Development, Dimensional and Diagnostic Interview or 3di. I believe it is shown to give a reasonably accurate placing on the spectrum and that there is a movement towards trying to do this. I have got a photocopy of an article about this from Child Adolescent Psychiatry dated May 2004. I don't know where else you would get info on this. My Paediatrician brought this to a meeting and has secured funding from the borough for this, he was also going on some training I think, possibly at the Insititute of Child Health.

We did the 3DI test on my son. It was very long and thorough though some of the questions were not particularly easy to understand. You could see how they'd been lifted out of research papers with little thought given as to how they were phrased. It also gave you alternative diagnoses or comorbids like ADHD, OCD, anxiety disorder, behavioural problems as well as assessing ASD.

What I didn't like was how it defined ASD as either AS, autism or atypical autism. You did the questionaire and the PC churned out a score for each part of the ASD triad. If the score was above a certain level it was significant. You then had to consult the booklet to interpret what that meant. If you had 3/3 significant scores and your child had normal speech until the age of three they had AS. If you had 3/3 significant scores and your child had a significant speech delay (no 2 word sentences) before the age of three they had autism. If the child scored 2/3 they were classed as atypical autism. My son fell into none of the categories despite scoring 3/3 as he had a speech delay before he was 3yrs old (so not AS and further along the spectrum) but his speech delay wasn't severe enough for him to come under the autism category. There was no discriminator for HFA or autistic children with mild-moderate speech delays at all. After spending 3 hours filling it in I was very underwhelmed as it seemed whoever decided the criteria for the different categories of autism (think based upon ICD-10 rather than DSM-iV) didn't really understand ASD and nature of the term 'spectrum' properly. Unlike tests like the DISCO there is also no element where the clinician observes the child too

3DI is in its infancy though so maybe these problems will be ironed out in due course

Lx

What makes it even more confusing is that the speech delay element isn't always clear-cut. My ds1 was just starting to say some single words at around the age of 3. He started getting SALT input soon afterwards and 6 months later had a dx of ASD. With ds2 we had a fair idea of what to look out for and so started our own early intervention when he was about 15-16mths old. He had some single words at 2, started seeing the SALT about a month later and was able to start puttting words together about 6 months later. This meant he was classed as not having a significant speech delay and therefore has a dx of AS. I can't help wondering whether ds1 would have made similar progress with the same kind of early intervention, or whether ds2 would just be starting to speak around now (at 3yrs) if he hadn't had the early intervention. Would they both still have been given the dx that they currently have?