going for our D.I.S.C.O on friday

[beverleyjayne]

hi everyone, just wondered if anyone had any advice for me re our DISCO on Friday. my dd is 10 and is attending the child development team who are doing the disco and is also attending CAMHS. they think she presents as aspergers but as usual dont want to commit themselves. we also attend CAMHS were she has a 1 to 1 session there, although i honestly dont think this is doing her any good. she is in primary 6 and now has an awful school phobia, we have major tears etc every morning and it is a terrible fight to finally get her there, she is slowly withdrawing into herself and doesnt really care about friends now, she doesnt seem to be able to cope with them now, and defo cant cope with more that 1 friend at a time. she also has lots of other traits - lights, noise, doesnt do hugs or touching at all, would live in pjs if i would let her. anyway at long last it is time for the DISCO and i was hoping someone would be able to tell me what to expect or even to ask? i kinda hope that on friday they will be able to say yes or no so that we will be able to try and explain to dd what is going on with her and why she is seeing all these different people, as i am sure that is also upsetting for her. i also think that dd needs help in school, not for her work as she would usually be in the top end of the class but for helping her with new things as when she learns something new she has no confidence and we have to go over it countless times and she will still doubt that she knows it and still cry. thanks for reading all this, hopefully someone will be able to help!!

bev

Well I don't know about DISCO, but my 2 sons were referred by CAMHS for assessment. They both have the High Functioning Autism diagnosis now.

I took my younger son out of school 9 months before the diagnosis came through, because of his suffering which showed at home, not at school though. His confidence is coming back with home education. He would be coming to the end of year 6.

My older son had been in (private) secondary school for 2 years when the diagnosis arrived. He was increasingly unsettled at school. It was only after an independent Ed Psych report was done that they made strenuous efforts to help him to have enough support at school.

Even so, tonight I had a chat with him, he was getting very stroppy and teenage. It turned out he really wants his own allowance and debit card. Then we continued chatting and I asked him how it feels when he holds and pen or pencil. He told me with tears showing in his eyes how he feels panicky and pressured to write and write fast and he just can't. He used the phrase 'writing phobia' and I pointed out it was the adults' responsibility to pick this up and help, not his fault for finding writing difficult. He has a laptop but doesn't feel comfortable to use it in all lessons, he has to 'forget' his book in order to be able to use his lap top for note taking. Arrgghh. More to sort out.

Anyway this is a long way of getting to the point: I hope the assessment picks up exactly what is going on for your daughter. The stress AS or High Functioning Autistic children go through can be very high. A diagnosis has given me a big word I can use on the school. Generally the teachers I speak to do not have a child with this themselves, so I put on a grim face and get all determined. Remember all the people involved in your daughter's school and assessment are paying their mortgages with the wages they earn by treating your daughter well or not so well. Make sure they earn that money.

Hi Beverleyjayne,

The DISCO is a pretty good assessment with about 100 different questions to ask about your daughter - on just about everything imaginable really.

Thinking about what you say of your daughter, you tell us she's developed a
school phobia, which is a very clear sign that she's not coping with the school day at the moment. As the pace of work gets faster, and as children get nearer to puberty, they can react very differently to things they sort of coped with beforehand, so it doesn't suprise me that she's reacting differently to things now.

It sounds like major sensory problems with her dislike of lights, noise, hugs or touching, wearing ordinary clothes etc.

I think you're right about her needing a different set of help in school. If she is struggling with her confidence on new topics, then she needs different strategies to help her to feel sure of the right answers.

Not sure if they will be able to say for definite on Friday. I hope so, for her sake, but of course they have to be sure, so don't get your hopes too high.

How much do you know about ASDs and why children might react in these ways because of the way the brain is designed differently? (If it is an ASD, of course). Our world is certainly experienced very differently to yours, and with no way to switch off from loud/unexpected/difficult sensations and no way to transfer information to a new topic in a common-sense way, it can be a real challenge for us.

Apparently people can put on an uncomfortable school shirt and after a few moments they can 'forget' about the discomfort. Our brains usually won't. They shout at us about it all day until it comes off again.

Apparently people can filter out the 29 voices in a classroom that are chatting about their groupwork and just listen to the teacher. We just hear a wall of sound, a bit like you standing next to an aircraft taking off. Would you be able to work with that noise level?

Apparently if you've learned that you can calculate the size of squares, you can easily work out how to calculate the size of rectangles. We might not know that at all, even if we're very bright. They're different shapes, so why should the same rule apply!? Our brains often just don't match things like yours do, so a new topic is like being landed on an alien planet with no clue how to speak the language. Nothing we've ever learned before helps, and we have to start learning from scratch for this new one (er, what IS a 'scratch' that people learn from?! - that's another thing - our brains may only accept one meaning for one word. So if 'scratch' means what you do when you itch something, my brain won't accept it meaning something else,and I end up really puzzled). That's the sort of difficulty with understanding that can be disguised in the earlier years in primary, but it's more difficult for us to cope with when the work gets harder. Not all children with an higher-functioning ASD have all these things, by the way. We're all a bit different.

If the school can help her work in ways that match her needs, brilliant.
Meantime, hope we hear more from you about what goes on. Lots of lovely people on here who know a lot.

hi there, thanks for taking the time to reply . milou2, stress defo is a major part of dd problem, she gets so stressed out at the smallest of things - although i know they arent small to her - that is why she is attending CAMHS, to see if they can help her with her stress and anxiety although they have said that if she does get the dx of aspergers they dont think that they will be able to help. they also told me on monday after i rang them after a particularly hard morning getting her out to school, that they thought that they felt that she would need to go to a live in institution for a few weeks for 24 hr observation, without me . needless to say i cried all day and night, not really knowing what to do!! i feel that if they did that on dd she would totally lose it, obviously i think this is if she doesnt get a dx of aspergers. to tell you the truth it feels to me as if CAMHS and the child development team instead of working together dont really know what each other are doing.
amber32002, i have been following this forum since christmas since we were told dd might either have aspergers or ocd, and dont think i would have made to here without you all. i have read a few books on aspergers since this all started and in my heart after everything i read, i do feel that dd has aspergers or defo on spectrum somewhere. when i look back at her from birth lots of the signs were there, she absolutely hated leaving me, did the hand flapping thing - which we thought was very funny - walked on her tip toes and still does this to this day, shes like tigger bouncing along. even in nursery school a teacher flagged up how sad she seemed and how she always prefered to be on her own - hindsight is a wonderful thing and can also make you feel terrible.
however amber how is it possible that it seems as if she is steadily day by day getting worse. her temper is awful and she seems to withdraw more and more. yesterday i took her to the cinema but she didnt want to bring anyone with her, just me. is it normal sorry i hate that word now, for dd to get worse. i just feel that we are struggling along each day for each new appt, but when you get to that appt, another looms round the corner and its never ending, meanwhile dd gets worse and we dont really know what to do.

thanks for all your help

Is primary 6 the last year of primary school?

no she has one more year to go, i live in northern ireland, and next year in p7 they do tests to determine what school they will go to. i honestly dont know how she will cope with them, in the practice tests they do at the moment she is usually top girl in her class but she goes thr a lot of worrying and stress before them on a tuesday night. and i really have no idea how she would cope at big school, doing maybe 6 different subjects in one day.

"is it normal for dd to get worse"

I'm not an Expert or brain scientist, but I've had enough years of reading and talking with them to have a few clues, have lived this myself, and have talked/communicated with any number of people with an ASD. And yes, in my personal opinion it is indeed possible for us to get worse/better/worse/better over our lifetimes.

Worse as toddlers, maybe a bit better around 6-7-8, worse as puberty approaches, better if (as girls) we're on The Pill because it changes the hormones which has a knock-on effect on the oxytocin levels in the brain (that's not a theory that's 'Out There' at the moment, but it's being thought about), worse when we hit the menopause or are under big stress, etc. So, expect the unexpected.

As for her being separated from you for weeks, well I'd have happily had myself shot if someone had done that to me. Heck. Double heck. No! And that's an opinion they can take off any competent person involved with ASDs. It's like taking a child who is blind and bunging them in a room full of overhead projections and 60ft holes in the floor for a few weeks and saying "Well, we'll soon see if you can see something, eh?". Yes, at the expense of them being grieviously injured.

There's tests aplenty that do not involve any child having to be put somewhere else for a week or weeks. Goodness me...what are they thinking of?

hi amber, just had the biggest meltdown with dd there now. she was with CAMHS on friday and they have arranged an appt with their supervisor, top huncho i think, to see dd and she what she thinks of her. dd as you can understand doesnt want to go and has just gone off the scale re the appt and how she is never asked if she wants to come etc. very hard to explain to a 10year old what is best and she cried and screamed for a good 40 mins, how would you handle that, cos nomatter what i say it is wrong .

i do feel that dd is getting worse and i think that it is a mixture of puberty and also aspergers as i think it is defo the social side of things that dd is having major problems with,ie her friends and not wanting to see them, talk to them etc and i dont know who to help with that either. sorry for being a pain but as i said before we are just really trying to struggle on on our own, although hopefully after friday they might be more forthcoming with advice etc. i know that blossomhill also has a dd around the same age so i am hoping that she will come along with loads of advice

thanks again

bev

Hi Bev

Sorry was replying and didn't see your last sentence mentioning me Nice to know you thought of us

My dd is nearly 10 and is definitely getting worse To the point where it is going to panel next week for her to transfer to a more specialist school. Like your dd she is very bright but she is like a 3/4 yr old emotionally and I can't take any more of mainstream school. She is leaving her school whatever no way am I sending her back for yr 6 she won't cope. My dd is developing really fast and it's quite scary as I think that's why she's getting worse. If you need any more advice please ask and can alwas contact me off of mn.

I am desparately trying to get this Ispeek book/cd rom that is specifically for girls with asd and helps prepare them for puberty but is out of stock everywhere.

Hope to speak soon

hi blossomhill, i love your name, think i can understand it!! can i ask what age your dd was dx at, my dd hasnt been dx yet, and i dont even know if they will. hopefully after the DISCO i will know more. but the more i read and and the more i follow mn, i really think she has aspergers. how do you cope if your dd goes off on one, do you just try to listen and comfort where you can or what. always after one dd will always apologise and say she didnt mean to cry and get to cross etc. i always just hug her and tell her i love her and what we are doing is for her benefit, ie going to see all these different people etc. does your dd struggle with her friends too and would she be very moody etc, dd moods can change within minutes and dont know if this is typical of aspergers or not. please excuse my wording on this but i really am at a loss as to what to write etc.

bev

hi beverley, yes it fits me very well My dd was nearly 7 when she was dx. To be honest I am surprised they are using the DISCO method as I have only heard of the ADOS being used in recent years. My dd was dx on observations but no dx tool as such.
Erm it's getting harder to be honest with dd as she gets older and the melt downs. She has to have things her own way even if it's controlling the songs on the car stereo. My dd is a bit like that and does apologise usually hours later when she has kind of reflected. Dd really struggles with girls her own age and doesn't really have friends and the ones she does have are usually boys with special needs too. Yes I think most children at 10 can be temperamental but more so with AS. My dd has Adhd too so may present differently to your dd. So how long have you had concerns with your dd?

Quick thoughts re what to do with a situation like the one with your dd and the meltdown over the appointment:

Much depends on how much we know in advance, and how information is given. let's say for example,

"You're seeing the (x) team on Friday at the hospital to have an assessment to look at ways you can cope better" which would work for a lot of NT children.

"On Friday this week, you and I are going to this building (show photo) where we will see these people (show photos, or details of what sort of people) at 3pm so that they can give you ideas for how to cope better. We will be there for approximately (2) hours. During the time we are there, they will ask me questions and they will ask you questions. The sorts of questions will be about....(list)".

No guarantees that either approach will result in a non-meltdown, but the second approach is certainly one that tends to result in less, or shorter, meltdowns because you're showing willingness to help them take away any and all possible surprises from the situation. If there's certainty, known facts, known people, then it's that bit less horrifying as a prospect?

Might not work, but worth a try unless you already do it that way?

hi blossomhill, i have no idea about the DISCO at all. when we first went to the child development centre the dr did a few different things with dd. she had her doing puzzles, looking at picture cards, asking her lots of questions and telling her jokes etc.she would ask dd leading questions were most kids would straight away ask something back again but dd would never do that. after that meeting she said that she presented as aspergers but would like to see her in school. she went about 6 weeks later to watch her in school, but she was only there for about 1 1/2 hrs, then she came down to me and said how well dd did in school and had eye contact, and walked round with her friend at break time!! however she didnt see the 1hr of sheer crying and utter despair before she got to school, and in school dd really tries to keep it together and when she comes home she is totally exhausted, so then more agression etc comes out. meanwhile we have been attending CAMHS to try and help with her anxiety and stress, however i honesty dont think this does anything and only adds more stress to dd as she hates going. sorry blossomhill, going off target here, we originally went to the consultant in december as i thought maybe a counsellor would help dd as she seemed so down and was slowly withdrawing from everyday life. he examined dd and said that he was thinking along the lines of aspergers or ocd and that is when this rollercoaster started. looking back dd always was very hard work and hated being separated from me. even her nursery teached flagged up how withdrawn she was and how she seemed to carry the weight of the world on her shoulders. dd also handflapped a lot when she was younger - we found this funny! -walked on tippy toes, still does, always lined her toys up in rigid lines, when she goes on her bike she will only go one way and if something gets in her way she will wait till it moves, not her. dd also will not let you hug or touch her and hates kisses, noises, bright lights so will not go in the car at night. it was only after seeing the consultant in december that we started to put everything together and all her quirks that we found funny before now meant so much. however now dd seems to be getting worse as the weeks go by, and i dont know what to do for the best anymore, so therefore i am hoping that after friday i will know more etc

thanks for reading all this, all advice or any words will be gratefully received

bev

hi amber, thanks for your reply. dd knew about the appointment etc, her anger i think was because she wasnt asked if that appt suited her she says that no one asks her what she wants to do etc. the meltdown orginally started as she was doing some homework and wanted the house quiet, even a paper rustling is major noise to dd. my ds who is nearly 16 and has a very deep voice was talking to dh and this annoyed dd greatly, so she gave up on her homework more or less and it took off from there. so i think then everything that was annoying or worrying dd came out.

bev

Aha, the Grand Buildup! Add together noise + homework + all possible ramifications of an appointment = Meltdown. Badly phrased as "I'm not consulted", but actually meaning "I'm scared witless at being out of control of what happens because I can't switch 'active input brain circuits' fast enough and I'm too young to even be able to realise what I'm scared of yet"

Trouble is, the noise of other people really is often deafening for us. Earplugs or ear defenders might be a solution, or get her to use the tried and trusted wrap-yourself-in-the-duvet-trick when about to explode with anger/shut down with shock.

Whatever you do, don't try to reason with us when we're being unreasonable. Doomed to failure. If possible, make sure we're safe, leave us to it, reason when we're calm.

oh amber i wish i could bring you to our house just for a few days, cos i think your insight would be fantastic. i have tried to explain to dh and ds that dd cant stop these meltdowns and that she really cant help them, but sometimes i feel it just falls on deaf ears. i know that dd must be terrified and i can only try and reassure her that i love her and that i am only trying to help her by taking her to all these appts although i know they scare her, its just like a vicious circle sometimes. anyway i will send your airfare over lol, what would your hourly rate be

bev

An hourly rate? No charge at all for my overly long silly ramblings and with the amount of trouble I have getting through airport security, I'd rather paddle across on an upturned kitchen table! (Security forces are trained to spot people with odd eye contact and body language, so guess who gets frisked multiple times )

We can stop some of the worst of our behaviour, but it takes a heck of a lot of skill and practise and insight. The insight is a problem, because before her age I didn't even know I was a person!

Curiously, the "love" thing may be no consolation to her at all. We're often not at all sure what 'love' is. You can't see it or smell it or feel it or bite it or hear it, so it's one of those "What on earth do the NTs mean?!" moments for us. Important that we realise, and learn, of course.

But mostly she needs to be able to feel her way through each new experience in ways she knows she can cope with. A bit like a mountain climber trying to make it across an icy ledge in the driving blinding snow, she needs to feel her way from situation to situation with some knowledge of where the handholds and footholds are. To you, it looks like a perfectly ordinary grassy field. To us, a life-threatening nightmare if we put a foot wrong.

Even you acknowledging that you're aware of the differences might help her a bit. Work with her, in a quieter moment, to see what she knows about what would help her. What does she need - is it pictures, is it knowledge of what the questions will be? Could be anything that's the main worry, and might take her a while to even begin to put it into words.

Try her with pictures. Can she draw what she needs? Or find photos that explain it? Works better for me, sometimes.

With my son the things which lead up to him getting edgy and dangerous are hunger and not feeling respected/having his freedom removed.

These often occur when a conventional event is happening, eg during a visit to London to see my parents, husband being curt before a planned flight taking the children on holiday.

In both cases I felt deep down I had to suppress my normal 'ensuring ds2 is fed frequently and is listened to with care' instincts. So I actually felt a fear around taking care of him and couldn't stand up for him in a sense.

Remember I'm talking about how it was for us the last 2 times he was very dangerous. Your experience will be different. Luckily since home edding it has only happened 2 times in 18 months. Beforehand it had become our way of life, my terrifying normal

I so wish there was better support available for any family facing a child who is frighteningly aggressive. No family should have to be living for days and weeks and years under the strain of violence or aggression when their child/young person is old enough to do some real harm to themselves/others. I shall be keeping everything crossed that good things happen from the Autism Bill or related guidance this year.