AS and organisation in recently diagnosed pre-teen

[Fortheloveofeverythingholey]

Hi

Firstly, have name changed, am a regular on another board and heavily involved there and do not want to muddy the water so please forgive me.

So, I am asking for help.

We have a recently diagnosed 12 year old with AS. High functioning and in mainstream high school as of last September which is where it became so very apparent to everyone, not just us, hence a diagnosis.

One of the things we are struggling with is instilling the need for organisational skills with regards to school. Recording the homework required, when, what, why etc. and then getting it done, properly, in the right time frame and not screeching round an hour before school on the right day with the ab-dabs and upsetting everyone/whole day etc.

Please share your wisdom on this and so many things we need to know.

It has been a welcome diagnosis as we now feel we can deal with things but you can only read so much, any practical help from people who live it day in day out will be most welcome.

How do you deal with the non-emotional response to situations, the 'stroppy' demeanor, teaching social skills, staying calm.

OK, too much for one thread. Lets start with school work which is the blue touch paper right now and becoming more of an issue everyday. Many thanks in advance.

...organisation...WHAT organisation??? (Sorry not very helpful, I know). My Y7 asd DD is the same, at the moment, I still organise her. It saves my sanity. Except for the last 3 weeks when I have been ill/in hospital/on bed rest with pneumonia. So have been unable to organise her properly. And DP is unable/unwilling to (not her dad). And now I have a to-do-list to sort out that is longer than my arm...and leg...

Truthfully, first port of call, phone or see Head of Year, and ask HoY to ensure that all homework is written in planner by teacher, clearly and with a hand-in date so that you can ensure it is done on time. Make him?her? pack her bag the night before, or pack it yourself (I do). It saves the collywobbles in the morning when no-one is at their best.

Print timetable out and put on wall where your dc can see it, and ask HoY for a homework timetable (this should tell you what homework is meant to be set on which night, and when it should be due in, but be warned some teachers will not stick to it, no matter how many times they are told it is important for your child).

If you have problems getting them to get their clothes on in time etc, then get them ready or make your dc do it if they are capable, the night before. It's organisation on your part for at least another few years tbh, my brother is also AS and even now he has moved out to live in digs at uni, my mum still has to ring him twice a day to remind him what he needs in his bag for his ;lectures the next day, or he doesn't take any pens/pencils. And he's 19yo...

HTH

I'm not quite in your shoes yet as my DS is in Yr 5. However we have been thinking about his transfer to secondary in 18 mths with his teachers at juniors and the organisation and the need to take more responsibility for getting himself in the right place at the right time with the right kit is a big issue for him.

I have no words of wisdom, I'm afraid, except to say that I recently read Caged in Chaos and would really recommend it.

It is written by a girl with dyspraxia but there are, as she acknowledges, massive overlaps with those on the autistic spectrum in terms of organisational abilities or lack of them.

It is aimed at teenagers and their families so it might be worth a look.

Loudass, firstly, hope you are feeling better soon!

Secondly, many thanks, there are sone really excellent tips here. The school has been told but I think more needs to be done now and they need to support her more. Liking the homework planner/timetable idea lots.

It just seems that the change to secondary school has made it all so worse. Seemingly at the start of term she seemed to thrive but by half term it was crumbling. Now she seems almost to be regressing, it's like she is paralyzed by stress and caring less and less but desperately unhappy about being moved down groups due exam results / substandard homework etc.

Niece - tanks for the recommendation, will read it for sure. Any insight is power i think.

Hi Forthelove,

I should also have said the book I recommended is extremely readable so your DD may be able to cope with it too if she is a fairly proficient reader. It might help her take some control of the situation herself and see that she is not alone.

Niece - thanks, she is a proficient reader but is very high functioning I think compared to most and the more she reads the more she seems to be hiding behind what she reads, and regressing from the stuff she can do very well as she seems to be saying 'We' (AS suffers) cannot do that, or understand that' but it was stuff she could do before the diagnosis. Almost seems like the stuff she finds so hard she no longer wants/needs to make any effort to combat as the book says she cannot do it or cope. Does that make sense?

Take no nonsense from her. Most of us at the higher IQ end, and many at the lower IQ end, can find ways round many things with the right help/support/info/whatever works. We can't become brilliant socially, or drop our need for routine and order, or spot body language very well, or use a lot of common sense, but we can find ways to do stuff. Well, if we're not stressed out and exhausted

Sounds very much like she needs much better support at the school. What support does she get?

Hmm.

My 10 year old has been dx'd for years but oprganisation is a huge issue for him.

He doesn't see what needs to be done and is too easily distracted to adopt systems: for example he knows that letter A needs to be given to aprents, but between class and door B talks to him and he is distracted so letter flies from mind.

It;s in part a sequencing uissue, and also linked to memory / concentration and attention, and indeed common in children with dyslexia (the increasingly standard message I hear now is that every child with asd has something else going on, dyslexia whether dx'd or not seems the most common). A lack of organisational ability ios a key diagnostic aspect of dyslexia.

So tbh I would argue with Amber that actually it is as much an aspect for soemas communication. However, it is certainly not an issue faced by all and we all know of the stereotype of the immaculately organised AS librarian type who likes every CD in alphabetical order and all files ship shape.

It's not like that for everyone, though.#

One major hurdle can be starting: if you have problems delineating and ending one task, then starting teh next is as big an issue. if the job is a major one 9eg tidying a messy room) then being able to filter and organise the steps in ones mind can be a huge hurdle.

We are slowly aqyuiring lots of prompt cards and putting in place techniques such as the TEACCH system where all things require3d for one activity (eg homework) are in a basket ready (DS can wander off to fetch something and never return), and school are putting in place other systems- eg because item,s sentare raely received at home, all things that can be saved for a Friday are put in a fiile that holds a tick list that shows what should be in there. GHome school books are handed to me direct (we're on our 4th this term), lunch money handed in at school on arrival.....

There's aa very good book on Amazon I find practically helpful, here

Peachy, is it often a problem - yes. But a young person using ASC as an excuse for not trying to find an answer = no. There's possible answers out there. For example dh uses a dictaphone and help at work, ds uses a specialist unit at school and specialist equipment to help him search and his friends and I know how to help him find and organise things. He has HUGE problems with organising and referencing anything at all.

We've just found ways round it, which is what I meant?

Ah I see yes.

Although...

the excuse thing sets me thinking

ds1 is hf; bloody obviously so. But on some things it seems there areb huge gaps, hard to explain but whilst he can work with somerthings, some things seem immoveable for him at this stage.

Like... social communication. We ahd a review with the LEA about his aggression, we explained carefully (yet again obv) about how someone touching him etc doesn't meran he has to whack them; he listened; then he sat and talked at us for ten minutes about how people annoying him means he can't not be aggressive.

Arrrgghhhh.

The LEA rep seemed very [shoc] that a child she commented was so bright was also so totally unable to understand the mechanisms of such interaction.

And I think organbisation is similar: until he can understand why he needs to do X and Y and his role in it, the rest is simply scaffolding around a missing link if that makes sense?

Amber - the school are taking ages to pick up the gauntlet and a lot more nagging from us is to come I feel. Its things like,

'the XX teacher told us the test next week would be really hard, why would he do that just to scare us'

Me: no, he said that to get you to study really hard in preparation

'Oh, no, he did not say to study'

Me: but that is what he meant

'Oh, its tomorrow'

or

Me: what exactly did the homework say to do

'It's written in my planner'

Me: Well, what does it say'

'I don't remember'

Me: Where is your planner?

'In the bedroom'

Me 'Why don't you go and get it then and we can read exactly what you wrote down.

'Oh, Ok' huff and puff away

This is normal and to be expected right??

Thank you peachy, have ordered that book!

Also, I have got 2 'file boxes' from WHSmiths that all DD's school books and text books and 'projects in progress' are kept in that live in the front room on the shelf, and if a book isn't in her bag, then she is made to put them in the box, and net to the box is a big pen pot that has pens pencils ruler and an extra maths set in so she has no excuse about not finding things that are needed for homework. And 2 pencil cases on the same shelf one for gel pens and felt tips, and the other for coloured pencils. Literally everything she will need for homework is on one shelf, so there's no procrastination.

That should read 'next to the box'.

Transition to secondary school is a huge shock for children with ASD. they go from being in a relatively sheltered, small junior school where they are generally taught by the same teacher for the full academic year and are surrounded by children they have grown up with throughout their time at junior school and then suddenly....

they're in this vast secondary school with people in their class they've never met before and they are taught by several different teachers each day in different classrooms in a school they are not familiar with.......

No wonder they start to detriorate very visibly and very rapidly.

The school will have a SENCO. I woudl ask for an appointment with her class tutor and the SENCO so you can explain her difficulties and they can ensure that all the teaching staff she comes into contact with are aware.

You may also be able to get her a buddy that she can pair up with until she's more familiar with her surroundings and agreement that she has a quiet room to go to should she feel overwhelmed or threatened by all the noise and buzz of a busy school.

As has been said - a homework diary is a great help and I would also use one at home as well for out of school time. We pin a 7 day diary sheet to the fridge.

Thank you WetAugust, its good to know all these things, especially the bit about the school change inducing deterioration.

Many thanks, much appreciate your posting.