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Trying to understand how ds sees the world (autism)

20 replies

tacal · 20/04/2014 20:23

ds is 5 and has a dx of autism. He is high functioning and at mainstream school.

Last week he was at an athletics club for 5 days. He was there for 3 hours each day and I stood at the side and watched him.

I have always known that visual instructions help ds but I did not realise how much until last week. He can not follow instructions at all. Even when the coach showed him what to do and he saw other kids doing it he still didn't know what to do.

At team games he just ran around trying to fit in but not knowing what to do. He never once told anyone that he did not know what to do. I stepped in to help him when he needed help.

What causes this? Is it a processing problem? Is it language? Where exactly does the problem lie and how do I help him?

Ds has always needed very rigid routines in his life. Otherwise he had severe anxiety. I can understand now why he needs these routines. It is so he knows exactly what to do. If there are no routines then the world is really confusing for him.

I feel like I did not really understand ds until now. I think the world is a big confusing place for him and I have no idea how he manages at school. No wonder he is anxious.

I think I will have to speak to the school to make sure he has a way of letting them know when he does not understand what he has to do.

Any advice on how I can help ds would be very much appreciated.

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Ineedmorepatience · 21/04/2014 09:55

That is what Dd3 is like too with instructions. She learned quite early on in her school life to copy the other children. It masks her difficulties though but when I watch her at swimming lessons etc I can see that there is a delay while she sees what the others are doing and then copies them.

She has told me that she asks other children what to do at school and I know she copies alot there too.

I have no advice sorry as we have made a complete hash of primary, all I would say is does he have a statement? If he is stressed at school now he will probably need one. Dont leave it too late before putting a request in.

Good luck Smile

twainiac · 21/04/2014 10:35

Hiya,
I'm probably not the best person to offer advice, but I will try.......
My DS is 8 now, and far better at following instructions than when he was young ( he too used to wait to see what the others were doing and copy). One thing that helped a lot at school, was the teacher giving him individual instructions, using his name. Sounds bizarre, but if his name wasn't mentioned he thought it didn't apply to him ( even though he then copied the others). Infact, his teacher is still advised to do that now. Also, his teacher has to be consistent with instructions, using the same words each time, rather than paraphrasing.
Good luck!

tacal · 21/04/2014 10:39

thank you for your reply Ineed

I have been clueless about school and knowing exactly what ds needs. He has told me a few times other kids have finished his work for him because he did not know what to do. I really wonder how much the teachers understand what he needs.

We don't have statements here in Scotland because each individual is supposed to get the support they need. I will have a chat with the school.

I hope your dd is getting the support she needs at school. It is so upsetting to see them unhappy. I am dreading the new term starting. Thankfully we don't have long until school finishes for the summer at the end of June.

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tacal · 21/04/2014 10:49

thank you twainiac for the advice. I think this does help my ds because when I think back to football lessons and group situations, he does not listen until someone says his name. I will mention this to the school. Thank you for pointing this out to me. Sometimes it is the smallest things that make the biggest difference.

It is also reassuring to know he may get better at following instructions as he gets older. I really hope so.

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threetoone · 21/04/2014 11:26

Strongly agree with twaniac about addressing them directly with their name and giving them a few seconds to process. Also breaking down the task so he isn't overwhelmed and forgets what he has been asked.

Can I ask, did you mention to the coach before he started the club? IME it helps so they can make adjustments and make sure they are engaged with the activity. You could maybe use a social story to explain what is coming up and that may help his anxiety.

Definitely speak to the school, there are easy things for them to implement and at five would probably be beneficial to the other children in the class.

troutsprout · 21/04/2014 11:28

It's amazing how they cope at all isn't it? Everything must seem so damn confusing and random all the time. Once I realised this, I realised how amazing ds was. I imagined myself in the same situation - Made to do things when I didn't have a clue what was going on...and honestly the respect I felt for him just blew my mind.

If I'm honest, the big leap came in the move to secondary school. It's so much more routine based. Rigid, with clearly defined timed lessons and subjects. Clearer expectations too.In his first year at secondary he told me how much he had hated primary..the random rules, the zoo-like herding, the chopping and changing with movable timetable, the spontaneity...
One very basic thing that I have always found useful is to tell people he comes into contact with is that "he needs his own person invitation for everything"... And that "unless the sentence has his name in it, he doesn't know you mean HIM"
Sounds kinda basic but ( lol)... Sometimes people need basic
When he was about 2 he used to ask anxiously " what will happen!?". He's come such a long way ( he's 16 now and takes himself off to college ) but he's STILL trying to navigate that confusing world.
Time tabling was really helpful at school but also at home. Visual at first... Verbal as he got older. He still needs to be told plans for the day .. He never just "hangs". Holidays were better timetabled.
He still can't automatically read from people's behaviour and visual clues what their expectations of him are ( this won't happen)... But he is a bright spark so he has learned from experience what some of them ( visual clues) look like.
He will get there- your boy

tacal · 21/04/2014 21:54

Hi threetoone I did mention to the coach before ds started. All the coaches were great when it came to teaching ds the running, jumping and throwing sports but they were not very good at helping him at team games. Maybe the group was too big and I should only put him into smaller group activities.

Social stories is a good suggestion, thank you. I have used a couple in the past and ds liked them.

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tacal · 21/04/2014 22:06

Hi troutsprout it sounds like your ds is doing really well. You must be really proud of him. It had not occurred to me that secondary school would be better. I have always imagined it being bigger and even more confusing than primary. So you have cheered me up and given me hope that things may get better.

ds has been on holiday from school for the past two weeks and it is the first time I have timetabled a holiday. I think it worked really well.

Can I ask, how was your ds with 'playdates'. Did he find it difficult to play with friends when it was not a structured activity or was he ok? My ds always seems anxious and moody after playing with friends outside of school but he looks ok while he is playing with them. I am still trying to decide if arranging play dates is a good thing or not. He does much better at organised activities.

Thank you for telling me about your ds and for your advice.

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troutsprout · 25/04/2014 12:02

Hi ... Sorry for slow reply.
Ds was okish with play dates at primary .His interests at the time were quite different to his peers ( stop animation with lego)so he didnt always fully engage but could tolerate.If a child liked lego and was non- destructive than they had a good chance of a successful time although I'm not sure how much of a shared experience it was.
At secondry , he had a bigger pool of kids and gravitated towards other boys like himself ... He could talk about intellectual things with them rather than what the nt kids talked about ( lol... "Girls, music, gaming and other unintelligent things" he once told me) . He was happier.

tacal · 26/04/2014 13:49

thank you troutsprout it is great to hear that your ds is getting on so well at secondary school. My ds does not have much in common with the kids in his class. Hopefully things will get better as he gets older.

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Kleinzeit · 27/04/2014 12:12

The “rule of thumb” that the child psych gave us for my DS was, if he usually copes with a situation, then try to keep him in it so he can learn from his success. If he usually fails – tantrums, misbehaves, withdraws etc – then either adapt the situation so he can cope or take him out of it.

So my thought about playdates would be, carry on if he manages them OK; but maybe not too many, and allow him plenty of quiet recovery time afterwards, and if necessary put some structure on when he has friends round. That’s pretty much what we did for DS. I usually included a biscuit-icing and decorating session in my DS’s playdates, they always enjoyed it and it stopped the “free play” getting out of hand.

tacal · 03/05/2014 14:12

hi kleinzeit I just noticed your post. Thank you, it is really helpful. I think adding some structure to play dates will help ds. So far I have just left the dc's to do what they want which is probably not the best for Ds. And I have noticed he needs quiet recovery time so I will make sure I let him have this.

It is easier now the better weather is here and we can arrange some activities or games in the garden. Ds loves being outside.

thanks again.

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MurkyMinotaur · 04/05/2014 01:21

Hi. I have AS and remember feeling lost and copying other children at school. I wonder whether any of these insights could help?

I wonder whether children with autism even realise they can ask for help when they don't know what to do. This is because, to ask for help, you have to realise that another person a) has their own mind with their own knowledge and b) if you approach them, they can communicate that knowledge to you. Because autism involves an impairment in Theory of Mind thinking, is it possible your DS isn't aware he can ask someone for further instructions?

When I was a young child, I never asked teachers for help and I would worry and struggle alone even if there was clearly (to others) someone nearby who would help if asked. It wouldn't have occurred to me.

Likewise, beginning a conversation could be tricky, so it could be an idea to learn a stock phrase to instigate an interaction, such as 'Please could you help me? I'm not sure what to do.'

You can buy (or make?) indicators designed for school desks that a child can use to show whether they are confident or unsure of what's expected. (E.g. Green side up = Happily working, Yellow side up = I would like a little help, Red side up = I'm stuck.)

www.specialdirect.com/shops/sd/Products/PD2055409/Hows-It-Going-Communicator/?rguid=16209cf2-5cb0-4fa7-91fd-2915e390c3db

If you have a look on the autism webpage, there are pencil case versions too. Only thing is, with either, I reckon an autistic child would be likely to face the colours towards themselves, not outward to communicate to teachers!

It would be easy to make laminated pocket-sized cards, to use in a similar way, instead of spending money and these sorts of tools can be used for a time until the concept comes more naturally or at least the process is learned by practice and functions to the benefit of your DS.

Just an idea.

tacal · 04/05/2014 09:43

Hello Murky thank you so much for posting. This helps me a lot. I will make some indicator cards for ds. We have started using cards for a lot of things and he seems to like using them. It is a good suggestion for me to teach him what to say if he needs help. I will make sure I do that.

Did you hate school or generally get on ok? Did it get easier as you got older? I keep thinking that life is going to get harder for ds as he gets older.

thanks again

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Ineedmorepatience · 04/05/2014 10:11

Hi murky that was a very helpful post, I have been trying to help my Dd3 to ask for help at school for years. I have always felt that there was more to it than just her not being able to say the words and now I understand better Smile

Her teachers just think because she doesnt ask for help then she must be fine but she isnt, everyday is a struggle for her Sad

Thanks again murky and sorry for the hijack tacal.

MurkyMinotaur · 04/05/2014 19:14

Ah cool. Well I hope it turns out to be useful in practice with your DC. You can get some good ideas by browsing the websites designed for schools, even if you use them just for inspiration and then make things yourself! Another useful shop is Spacekraft. (I love sensory toys, so I know lots of websites.)

Tacal - In my experience, school was hard in the early primary school years (until Year 2), then no problem throughout older infants and juniors, then hard again from Year 7. That's almost the opposite of troutsprout's DS' experience, so I guess it differs!

I think school is stressful when your ability to manage is lower and the demands are higher. In fact, I've heard that's what stress is - an imbalance between your ability to cope and what's going on that you have to cope with.

So I think any school age can be harder or easier, depending how coping strategies vs demands are balancing out. Having simple ways to manage by yourself can reduce stress.

If you'd excuse the example...In younger infant school, I would panic if I needed a poo at school! That meant stressful (post-lunch prime poo time) afternoons everyday! The reason was, I had a specific routine at home, involving an Argos catalogue and wipes, so in the different setting of school loos, I had no idea where to begin! If only someone had realised and found a way to explain a step by step method, my afternoons could have been less worry-filled.

In secondary school, for example, my stress could have been lessened by knowing simple self-care skills like tying my own school tie and again, a simple stock phrase to ask for help would have been useful, especially for things like finding new classrooms.

Ineedmorepatience - I relate to what you say about people assuming your DD3 is fine because she hasn't asked for help. I had that a lot too! Being clear on the next few steps of what was expected of me, at any time, would have been like someone letting the sunlight in - making everything feel clearer and calmer.

Sometimes I've heard of referring to 'Now' and 'Next' as a basic structure e.g. 'Now: Colour the picture. Next: Put it in the tray.' Or, 'Now: Hang your coat up. Next: Sit on the carpet.' Or whatever. As well as explaining what to do, I wonder whether it could be a means of checking whether a child is clear and confident about what to do, by asking them what is now and next. As long as the child was asked in the right way, so they didn't feel as though they were being tested on it!

I'm just thinking out loud. I wasn't diagnosed until my earlier twenties, so unfortunately, I had no extra help at school. But these are the sorts of things I could imagine would have been helpful.

tacal · 05/05/2014 20:43

thanks again Murky your posts are very helpful. School must have been stressful and confusing for you at times. Sad My ds does have some extra support at school which makes things easier for him. Though I doubt very much that teachers are giving him all the step by step instructions that he really needs. I think this is why he has struggled with reading and other class work. I wish I knew more about what he was doing in school so I could help him more.

Your poo example has made me wonder about ds. He usually does his poos at home. He has not done one at school yet so I am thinking maybe I should go through a step by step guide with him. So he will know what to do when he has to do one at school.

An ed phsyc mentioned now and next to me when ds was at nursery. He was not coping very well at nursery. Now and next and visual instructions are so important to ds. It is so difficult to get others to understand this. Even friends and family don't understand.

It is sports day on Friday. I am a bit worried about it because ds does not know what he will be doing. It is in a big stadium and he will be in a team. So I am preparing him for how to ask for help if he needs it and given him a wrist band to wear. One side of wrist band is green and say I am OK, other side is red and says I am not ok.

I really hate all the big events like school shows and sports day. It is probably good for ds to be participating but it is really stressful for him.

I will have a look at the spacecraft website.

thank you!

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MurkyMinotaur · 06/05/2014 00:55

I love your wrist band idea for your DS. Genius. I hope sports day goes as stress-free and happily as possible.

Regardless of how it goes though, having a parent who is aware and understanding of autism must be a massive source of comfort and encouragement to your DS, I would imagine. It sounds like you are and that's really cool.

Here's a link to Spacekraft, because sometimes the web search route takes you to 'RM' group - which is the 'umbrella' company. (As in, master company, not a manufacturer of umbrellas.) Grin It's expensive but great for inspiration for things you can make at home. (e.g. card, plus a marker pen, sticky plastic to 'laminate' and some magnetic strips = visual timetable for fridge door.)

MurkyMinotaur · 06/05/2014 00:56

Oops, forgot link. Here it is:

www.spacekraft.co.uk/shops/sk/Catalogue/Autism/80aafb9f-90bc-484e-8dca-529ed51d9b12

tacal · 08/05/2014 18:32

thank you Murky the website has some great things!

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