DISCO Assessment

I have to attend paediatrician to do a DISCO assessment for Little Mint.

I just wondered if any other parents have done this and what is involved.

Even better if there are any paeds or psychiatrists out there who can explain.

I know we are looking to diagnose an ASD but just wondered what happens. I've heard it's quite long winded.
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Comments

  • Sorry Minty, I can't help. Not heard of the DISCO assessment... Have you tried doing an internet search? Is it a multi-disciplinary assessment (ie psychologists, paeds, occupational therapists, physios etc)?

    Not much help am I? :(
  • It's a standard assessment for ASDs. It's a semi-structured interview for you (not Little Mint) - open-ended questions. Expect to be asked about a range of things like shared attention, language skills, pointing, imaginative play. Most of it is about current behaviour but some questions are about past.
    If you have any videos, photos, or other records (preferably dated) about Little Mint's difficulty with social interaction you could take them with you, and other records - school reports etc (good filing is very useful - I still need medical notes from when I was 8 sometimes)

    For the geeky - DISCO itself isn't available to the public (think that link should work without ATHENS access - I hope).
  • Slightly different approach to what we went through with eldest mini CC. We had a multi-disciplinary assessment (with the professionals mentioned in my post above). Although that was 7 years ago and I guess things have moved on since then...
  • Thanks Creamy and Duck. I'll look at your link in a mo DG.

    We've done the multi disciplinary thing but nobody has come up with any strategies for moving things forward. They've just identified an unhappy child with sensory processing difficulties.

    Things got bad at school a few weeks ago and there was a big exchange of emails between me and the school and I copied all the professionals in. I've now received the letter inviting me for a DISCO assessment.

    I don't know whether he has an ASD. If he doesn't I'm not sure how we will move forward. I fits the description of dyspraxia (to my mind) but I've been told he isn't typically dyspraxic. He also fits the description of Aspergers although he's quite different to the other child we know who has Aspergers. It's all a mystery to me but we'll see what this assessment throws up.

    Thanks again.
  • Minty

    All of these labels are a spectrum - very mildly affected to signiantly affected. If you read about all these differences and their associated criteria I think you could say most people have some form of something. My favourite is named Swan Syndrome - syndrome without a name.... Often these differences are co morbid - they can be affected by several - so what you see may be a mixture of effects of 2 different conditions.

    The label of the difference is absolutely irrelevant. What counts is the quality intervention that he receives. There are a lot of support groups about - do you have Ed Psych or LSAT reports/ IEPs which might support your trip to the paed?
  • And in english..!
  • LOL Andrew. Unfortunately when you're going through this it becomes every day language.

    Thanks Swimslikeawalrus. I will ask if there's an IEP that I can take with me to the assessment. There must be one but I'm not aware of it. I'm not sure what an LSAT report is????? The Paed already has the Ed Psych report.

    Swan Syndrome sounds lovely. Much nicer than Asperger Syndrome.

    Because things have been so bad I was trying to give some clear instructions for behaviour at school this week (with a promised reward if he can have 3 or 4 good days out of the 5). I told him that his secondary school (which he moves to in September) will send him to work alone if he is disruptive. I was really shocked when he told me that he would actually prefer to work alone! I'm a social creature and, in spite of his difficulties in social situations, I thought he was too. Perhaps he's more typically Aspergers than even I realise.
  • Minty

    SLAW is quite right. With respect whover told you that your son wasn't "Typically" dyspraxic was talking out of their bottom. There's no typical presentation of any given ASD.

    This is particualarly true the higher you go up the spectrum, the older the subject, and the more intelligent they are. They realise that they are "different" and they wantto conform. So all sorts of little mechanisims emerge to make them seemmore social.

    I've probably told you this before: Mrs FR has hundreds of little "scripts" stored in her head to help her deal with everyday socail situations. Of course for her its stuff like getting on the train, buying a stamp, all that sort of base level stuff.

    The idea of the assesment is to cut through all that stuff and expose the real issues. Or at least it ought to be. The idea is to help Minty Jnr.

    I suspect that little Mint says he want to work alone because he recognises the problems that he has associating with his peers. Don't despair though, the process I've described above, of learning to cope will take place.
  • Thanks FR. He's a clever boy and I've no doubt he can learn.
  • Sorry DG, I couldn't open the link but thanks for trying.
  • Minty - is he able to be a party to a behaviour contract? With him (you!) deciding what behaviours are acceptable and what are not? If he chooses the sanctions and rewards then he may be more interested in complying. I'd change it on a very regular basis too! Boredom = complacency!

    Does he have a statement or will this become part of the application?

    I'm not convinced that threatening isolation for poor behaviour is a good thing! There will be a whole range of sanctions in place before this. Equally there will probably be children more disruptive and with a range of more extreme needs. If children want isolation/ to work in a certain place etc what can happen is they deliberately set out to behave poorly so they get the effect they want - isolation.

    Regarding the IEP - if his needs / behaviour are signicant then he should certainly have one. The fact he has seen an Ed Psych in the past makes me think that his needs are such that there is a long primary history. You should have had copies of this stuff. The LSAT report is a report by a special teacher trained in identification of learning needs and will contain advice on how best to allow the child full access to the curriculum. Gives reading ages, often receptive and expressive language stuff, likelihood of dyslexia etc. I think you'd know if he'd seen one. May have similar but differet title.

    He is going to find secondary challenging (most kids do!) anything you can do to support his transition would be useful. In both respect of positive and negative factors!
  • and after I'd waffled on I bothered to google..

    http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1348&a=2239&view=print

    and interesting it is too..

    Hope it gives you information to support little mint in the future through his education
  • I'm not sure that I agree that sanctions and rewards should be varied regularly SLAW. If a child has an ASD such as Aspergers (without prejudging whether this is indeed the case with Minty Jun) then the one thing they tend to crave is predicatability. I guess the trick is to have effective sanctions and rewards in place that stimulate the child to at least attempt to comply (e.g.reward = being allowed to pursue obsessive hobby/sanction= not being allowed to)

    I'd agree that isolation is a bit of a double edged sword. If the child is intelligent and wants to learn, but cannot in the classroom environment (because of the sensory overload), then isolation may be whats required, and even desired. However the desire for isolation can also be driven by the childs social blindness. When they are isolated they are "safe". No one bothers them, there are no confusing non verbal signals, no double speak. Ergo as you say , isolation as a sanction may lead to persistant offending.

    This is why a large number of adults with ASD's are persistant offenders. Prison has a nice fixed routine, you spend lots of time on your own in your cell - its "safe". Hence when someone withan ASD leaves prison its akin to being thrown into the deep end of a swimming pool when you can't swim. You'll likely just paddle to the side and climb out again (ie re-offend).

    Whilst the farm provides Mrs FR's "safe" place, there's a deliberate policy on both our parts to move out of that comfort zone. Hence we go to the pub, the restaurant, football matches, concerts etc,. Its all part of her social "education" - and its a lifelong process.

    Something you might like to try with the graduation to "Big" school Minty: See if they will let little Mint wander round the place when there's no one else around. It might help him "map" the building in his head, so that he finds it easier to get his bearings when the place is full of kids. It will lessen the sensory impact on day one.

    Also get him to write down what sensory stuff bothers him (kids tapping pencils etc,.) If he can give each teacher a little letter introducing himeself and saying what bothers him it might help. Mrs FR puts up a slide when she gives lectures at the Uni asking the students not to do certain things that bother her.
  • That's a good idea, thanks FR. I'm a teacher in FE and I prepare pupil profiles. It's been suggested that I do a profile for his new school. I've just tried to make an appointment with the deputy head and head of house prior to his induction day on 28 June.

    I don't think there is an LSAT report. He saw the ed psych after I had a go at the head teacher about something insensitive she said to him which I felt she should have discussed with me first. When I pointed out that he is seeing a dietician, occ therapist and a paediatrician she then offered the ed psych. It therefore didn't happen as a result of anything specific at school.

    However, in the last few weeks things went slightly pear shaped. He perceived his teacher was bullying him. I tried to speak to her about it in February and she told him off for it. I was trying to just bide our time until he left but he, metaphorically speaking, stuck two fingers up at them and played havoc. He nearly got excluded in the week before half term. At that point I discussed the problems I've always had at home. He has definitely contained his problems in school and attempted to 'fit' into their box and I just think he'd had enough because of some fairly negative treatment. Their response was that Aspergers doesn't come on suddenly!!! I can't make them understand that it's always been there, but he saved it all for the confines of home, where he feels safe - or at least for when I'm around to soothe all the hurt feelings (both his and the people he has hurt).

    We were on a train on Saturday and he refused to sit next to a lady, announcing to the whole carriage that she smells and is weird. It was soooooooo embarrassing. She was a nice lady but she looked, quite understandably, fairly annoyed at what he'd said. That doesn't even figure in his mind though.

    Anyway, through my jumping up and down, screaming and shouting and accusing the professionals of not responding I finally got the long awaited letter offering assessment.

    He's an intelligent child who can cope with most things but when he jerks his knees (as he has now with school) the whole world gets to know about it.
  • SLAW - Thanks for the link. NAS have sent me their booklet on transferring to secondary school. Fortunately Litte Mint already knows the school quite well as he plays in the County orchestra and rehearses there on a Saturday morning.

    His new school claims to be specialist at dealing with these sorts of difficulties. LM has managed to fit into the educational system so far and up until a few weeks ago camouflaged his difficulties very well (apart from low self esteem). I have to confess I'm nervous for him about 'big school' but with the house system they have in place and the head of house looking out for the pastoral care of their pupils, I am hoping that, with the right support, he will go from strength to strength and go on to achieve well in life - or, better still, be happy (much more important than achievement).
  • minty
    my son's school had an extra inducton session over the summer for the kids with communication problems. it was fantastic, they hada ball (and he really didn't want to go at first - "extra school no thanks!!"

    :-)

    but

    you i think you need a diagnosis to access this sort of stuff

  • Hi Lurker - I hoped you'd drop in at some point.

    Little Mint's new school have extra induction for the kids that don't achieve Level 4 in Maths and English SATs but I don't know about anything else.

    My tutor is the wife of the headmaster and she advised me to arrange to meet deputy head and head of house before the induction day. That way I can give them copies of all the letters and emails.

    The assessment is on 25 June and induction is on 28 June - I can't see that I will have a firm diagnosis in readiness but hopefully in readiness for his start at school.

    I didn't realise but the interpretation of the ed psych's report (when read by Family Therapist) is that he has neuro development difficulties (which I'm assuming would indicate an ASD anyway). It would be lovely to know that I'm not going mad because I thought there was something wrong when he was around six weeks old. At one point, when all they said was 'you need counselling' and 'you need to go to parenting classes', I started to question whether I've got Munchausen's (sp?) by Proxy!!! I knew I hadn't when he had appendicitis and I told him to stop moaning and go and do a poo!

  • We were on a train on Saturday and he refused to sit next to a lady, announcing to the whole carriage that she smells and is weird. It was soooooooo embarrassing

    <FR chortles quietly behind hand>

    Oh dear - this was Mrs FR's favourite faux pas when I first knew her. Smell was/is one of her real sensory problems - its very acute.

    I've managed to stop her being quite so direct. (She once told a copper he smelt of horses - not a good move). But even now I'm often greeted with the words "You smell" when I get home.
  • LOL FR. Yes, it's one of Little Mint's problems too. If he brings the wrong jumper home from school, he knows whose it is just by the smell of it.

    When he was little I used to hide my love of chocolate from him, not wanting to teach him bad habits, but he'd smell it on me and know I'd been eating it.

    I am pleased that Mrs FR has managed to stop being so direct. I do worry that one day someone's going to thump my son. I've certainly had my share of complete strangers telling him off and saying 'everyone else might be prepared to put up with your bad behaviour but I won't'. The reason I put up with it is because there's no stopping him and attempts to stop him result in a situation spiralling out of control.

    This evening he was calling up the stairs to me that The Apprentice had started. I called back that I'd be down in a minute but he couldn't hear me and kept shouting 'what?'. After 5 repeats I said 'oh forget it' and he really made me laugh because he bellowed "oh, shut up! You can't even be bothered to shout!" His logic is incredible at times.

    Last night he asked me if I really bent all the way over backwards for my student. LOL I promise you, I'll move heaven and earth for my students but I'm no gymnast!
  • Reading back, I just wanted to be clear that working alone isn't a punishment in his new school. It's a strategy for children with autism. They work alone if necessary and then integrate wherever possible with the rest of the school.

    He's been switched off all the way through primary school despite being very intelligent. All I've ever received is complaints that he doesn't work ... preferring to disturb the kids around him who really do need to work. His recent request to sit alone has resulted in a much more focussed child who's finally putting some effort in and so maybe working alone is what he really needs.
  • I didn't believe for one second working alone is used a punishment sorry if you took that I did! My point was that children (all of them) manipulate to get what they want. For some children the reward for their poor behaviour is working 1:1 or in a different place and that is why they do it.

    FR - I agree totally about route. My point about varying sanctions was not espcially time specific - more that they do and will evolve. I think the idea about going to look round the school when it is free of students is a really good idea. Nearly all of them have a trauma in the first weeks about not knowing where to go and some take it in their stride and some get really distressed.

    I think the introduction letter is a good idea but would be cautious about highlighting irritations to other students. Tapping, pen clicking, humming and all of this stuff is often done deliberately to annoy and very difficult to stop when it is global. If he reacts to this kind of thing easily the others will realise and sometimes they will go for some 'sport' at his expense. Maybe worth considering his seating in the room now. Does he think he is better at the front? Back? sides or middle of the room. He will have to fit what is available but if he realises back of the room in a corner (no one behind to disrupt with a few quiet good role models around him!) is a good place for him to be successful and reduce trouble he creates for himself then it is useful to make teaching staff aware. Is he better on his own maybe or with a friend? Strategies in place to support a smooth start is better than strategies 6 weeks in to try and stop things unravelling! Are you meeting with the SENCO because this would be a good place to start. Everyone wants Little Mint to do well and if you feel his primary is not presenting his case well enough then you've nothing to lose by doing it yourself over the next couple of weeks.

    Minty the fact that he does attempt to fit in is going to help him. He is obviously aware of what 'normal' behaviour is (if you excuse the phrase!). Surely it is better to keep a lid on it in school. On entry to secondary is he going to do one of those 'intelligence' tests do you know? Because that might be interesting to see where his strengths and weaknesses lie (if they are able to provide this data). (tests which test a range of stuff across the range of intelligences - not 'learned' information). Are you aware of the stuff on the standards site? There is a lot of useful information including teaching strategies and common difficulties children with ASD face which may be useful for helping him at home with homework.
  • I think the learning to be less direct comes with maturity. Its what I was saying earlier about having little scenarios stored away. How to deal with certain situations. Having said that Mrs FR got herself arrested a couple of times before she realiesd that it really wasn't a good idea to tell the Policeman how many blackheads he had (36).

    You're right to be concerned about him getting into scrapes over it. Its not such a problem with females, as its not seen as being aggressive.

    Hopefully you wont have the problems with literal interpretation that I have. Mrs FR had a whole bunch of problems with that to do with her sexuality (which I wont go into here). Again - its different with lads. Literal thinking can be hysterically funny at times, and these days I rather think Mrs plays up to it a bit at times. Especially if someones annoying her.

    Alex Plank the co founder of Wrongplanet says the following about "hiding" his Aspergers:

    If you were an alien stranded on earth with only a passing knowledge of Earth society you'd try to keep a low profile. You wouldn't take any risks or draw attention to yourself. You'd do enough to get by but not enough to get noticed. For an Aspie its like the same, were aliens on the wrong planet.

    I think that also partly answers the isolation issue. When I first knew Mrs at Uni she hardly came out of her room, didn't eat very well, slept odd hours, sometimes didn't wash for days. Her sole obsession was her maths. It was the discovery of a second obsession, Pinball that changed things. She had to come out to play that.

    She still stays in her study for too long sometimes, and if folks who visit find it odd that we have pinball machines in the kitchen and the bathroom and whiteboards in various strategic places they dont say...
  • I don't know about the intelligence test SLAW. I'll find out more when I meet with the deputy head and head of house.

    As soon as you mentioned pinball, FR, I thought 'I bet they've got a pinball machine'. How wonderful!

    Little Mint's Dad (my ex) was obsessed with buses. I wouldn't be at all surprised if he bought himself an old Routemaster at some point in his life. He certainly would if he had the money.

    Thanks to you both. You've given me lots of useful guidance here and I will look into teaching strategies for children with ASD in a bit more detail and see what might be useful at home.

    Another thing he took literally was when I told him that "if I'd done that at school, they'd have crucified me". You should have seen his face - I wish I'd had a camera!
  • Well I wish you luck with it all Minty I really do.

    I think that in some ways I've had it relatively easy dealing with the powers that be - Mrs is so obviously "Not right" that there's never any argument about things. In every day life even if folks tut and tap their heads as if to say "Nutter" they are at least acknowledging the difference and (hopefully) making some allowances.

    You might like to have a look at Alex Planks website wrongplanet.net. Its American, but a lot of British kids post on it (its the only resource for ASD kids that exists). They often yatter on about school stuff, so you might pick up on something there.

    Email me if there's anything else I can help with.
  • my youngest son smells me all the time
    we make a joke of it
    and he knows not to do it i public

    but it is another bit of evidence in my box for saying he has an ASD
    although not one that requires intervention
  • minty - i find it staggering that your son displays such (to me) obvious signs and still does not have a proper diagnosis!!

  • my son has a la in his class at school who is much further up the ladder to autism in his Aspergers than my son is.
    i often ask boy1 how this lad gets on

    and he seems to get on ok most of the time, apart from when he can't see the point of something and so asks the teacher to explain how knowing the internal workings of an earth worm will be of any use to him in life etc
    this goes down quite well with the rest of the class as you can imagine

    Boy1 says that this lad is not bullied and i think the fact that everyone knows his diagnosis is part of why he is not bullied


    boy1 is very happy at senior school but i notice that he will cross to the other side of me if we are walking down the road and some of the older boys are around - but i think that would probably be the same for most of the boys in year 7.

  • At primary school I spent nearly every afternoon one year in the first-aid room. Was great - I was allowed books so I'd just read in peace with no-one bothering me, & needed a bit of convincing to leave :)
    Not sure it was good for me in terms of learning social interaction (& it was meant to be a punishment, though i'm still not quite sure why...).

    Minty - is little-mint going to boarding school, then? My brother went to one for a bit, and although he got on really well for a while there, i'm not sure it really helped long-term - he liked having all the extra structure, but when he left then it was very hard for him to adapt to not having it. (besides which, he got expelled for wandering in the front gate drunk with a bottle and a half of cider mid-afternoon - ISTM that mainstream private sector has less incentive to deal with 'odd' children).

    'Neuro-developmental difficulties' is a really vague phrase ~ 'he's a bit odd but we aren't sure about the specifics'. I'd definitely put that down in communications with the school - it means you have a diagnosis so you should be able to access their SEN provision.

    Unfortunately Ickle Brother seems to have dealt with smells by developing his own personal impenetrable smog zone through which nothing else will permeate. It is in vain that I try to persuade him that showering even once a week might be a good idea (hey, once a month in termtime would be an improvement). He's 20 now - I really hope he grows out of it soon.
  • FR - the Newton Institute in Cambridge has blackboards everywhere - even in the toilets (and I'm sure it counts as normal teenage behaviour to want to turn up to open maths lectures there - oh dear).

    I'm not sure specific diagnosis matters that much - it depends on what is going to be done about it. I don't think dyspraxia quite covers what I've got properly (I'd probably go for hyperlexia), but it means I can ask for accomodations at uni & there isn't anything more specific even if i wanted it. A few of my friends at uni are formally diagnosed dyspraxic (by coincidence - it's not why we met), and there's a lot of difference between things we can / can't do - for example one dyspraxic friend has a photographic memory for directions, maps, etc & never gets lost, whereas I still get lost on the way from campus to town (about a mile & I've been doing it a few times a week for a year now). Gettign lost has its upsides - I occasionally do much more long running than I'd planned to because of it :)
  • The inside of our toilet door is painted with blackboard paint DG :-))

    I frequently find Mrs FR's tutor group gathered round the kitchen table (where there's yet another whiteboard) doing maths stuff whilst Mrs skins a rabbit. They seem to take it all in their stride.
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