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'Inside Aspergers Looking Out'

(23 Posts)
Handywoman Mon 07-Jan-13 12:30:25

In order to try and have some discourse with my very visual dd2 (aged nearly 8 ?ASD) about 'different ways of thinking' I got this book as a way of starting to address the topic over the hols while we were relaxed.

dd2 absolutely loves the pictures in it, but it has not really hit the spot. She recognized herself in the bits about not understanding if people are smiling because they are happy or threatening, about meltdowns and not understanding why people ask you to 'behave' but others were a total miss e.g. trying to fit in with the crowd (a concept which she didn't even begin to relate to) or being good with new ideas, she would say things like 'yes but I'm not a snail, am I?' missing the generalness of it, getting irritated by it, trotting out the usual stories about so-and-so-saying-something-at-school-once,-and-being-'rude' (which is her general classification of other people's thoughts which don't chime with her own).

So my dd2 is just not ready for this discussion yet at all. Has anyone else had similar problems trying to 'address' the topic with their ?ASD dc? I am sure it would help if we had a diagnosis, then I could put it in more definite terms of 'the doctor says blah'. But we are still some way off from that (formal assessment due some time late summer).

Anyone?

Handy xxxxxx

Sunnymeg Mon 07-Jan-13 14:05:16

Hello. I have a 10 year old boy who was diagnosed with Aspergers aged 5. In my experience he finds it very hard to generalise.He can only relate to a situation he reads about if it is something he has experienced directly. I find that when I advise him about situations I have to make sure that I tell him if the advice is a one off, or should be a rule for life. Once when he was little, I got cross because he only put his dirty clothes in the laundry basket one day a week. He told me that I had told him to do this on a Monday (the day I told him) so had no idea the rule applied to the other days as well. Aspergers is a totally different way of thinking about the world, even now I haven't got my head around it and doubt I ever will!

Handywoman Mon 07-Jan-13 14:24:56

Sunnymeg thank you for your reply. My dd2 isn't able to deal with generalisation, but thought if it related to her we might be able to discuss some of the difficulties she has.

I read on here that this book has helped other dc think and talk about their struggles. Maybe they were all lots older? Don't know.

Dd2 doesn't appear to see herself as having any general struggles in life, although she can at least recognize that she has meltdowns. She is so fixated on her path, her self-esteem remains pretty much steadfast (which is brilliant, I know, other ASD kids can really suffer with anxiety). All her 'problems' she puts down to everyone else!!!! To the extent that this book doesn't really resonate with her. Not that I feel she has Aspergers, she would be potentially HFA due to her prior severe language delay, and she has no obsessive interests. I just thought (hoped) a picture book would get through to her....

Sunny does your ds talk about himself and the thing he finds hard? Maybe I am just expecting way too much at this age.

Just feels like forever my dh and I been waiting for some tiny scrap of insight on dd2's part that there's more than one way of 'being'.

Oh well, back to the drawing board.

Handy xxxxx

Ineedmorepatience Mon 07-Jan-13 14:31:22

I bought that book for Dd3, she loves it.

At 8 she was really not ready to understand about her issues and really thought that she was perfect and it was everyone else that had issues.

Now at 10 and with lots of gentle talks and discussions and social skills groups at school she is beginning to accept that some of the things that happen to and around her are because of her issues/difficulties.

We still have some difficulties with being able to transfer her skills from groups where she is very good at saying the right thing.

I think it is a long process tbh but buying that book is probably a good start.

Good lucksmile

Handywoman Mon 07-Jan-13 14:50:30

That's interesting Ineedmorepatience, thank you. Does your dd3 have a dx and did you/do you talk to her about it?

And oh yes, gentle is the operative word. Given that if I take a sip from her drink at the dinner table she is mortified to the point of tears, I could really screw her up with these conversations.........

Handywoman xxxx

Ineedmorepatience Mon 07-Jan-13 15:06:17

Yes handy, she does have a diagnosis of Asd she was diagnosed on her 9th birthday after 3.5 yrs of assessments. We tend to say she has aspergers because she meets that profile and the books that are suitable for her talk about aspergers.

I wasnt sure if she was ready to understand about her diagnosis but this summer we went on some trips with the support group that I go to and she wanted to know why she was going.

It went quite well actually and despite some very interesting behaviour for a few weeks, we have moved forwards and are continuing to talk and explain more about her condition.

Handywoman Mon 07-Jan-13 15:29:14

Of course, yes, you mentioned that on another thread (goldfish memory).

3.5yrs of assessments.... ooh I feel I'm in good company now (been on this journey since dd2 was aged 4, and still trudging along)

Handy xxxxx

Ineedmorepatience Mon 07-Jan-13 15:40:18

The proffs do struggle with our girls dont they.

4 yrs is too long.

Dd3 was eventually diagnosed using a DISCOassessment because school werent supportive and she is complicated. Lol.

Good lucksmile

Handywoman Mon 07-Jan-13 16:08:52

School not supportive? Does this mean they would not fill in the (....endless...) questionnaires??

When I go back in Feb I am going to ask what assessment tool they will use in the summer <tattoos reminder on to back of hand>

PolterGoose Mon 07-Jan-13 17:38:17

Message withdrawn at poster's request.

Ineedmorepatience Mon 07-Jan-13 17:45:36

handy, school did fill in the endless forms but they just put eithers ticks on everything or no issues, no issues ad infinitemhmm

The HT/SENCO truly believes she knows everything there is to know about SN's and if she decides a child doesnt have them then they dont have them.

We moved Dd3 in the middle of yr3 and after one term of getting to know her the new school supported us and she got a dx.

I know at least half a dozen other people who had the same prob with the old school and most have now moved.

Ineedmorepatience Mon 07-Jan-13 17:49:02

polter,I looked at "All cats...." but wasnt sure if Dd3 who is very black and white would be able to apply it to her.

I thought she would probably be quite happy to accept that all cats do in fact have aspergers but what has that got to do with me!! Lolgrin

troutsprout Mon 07-Jan-13 19:08:29

I don't think it's one thing in one area that gets through to them ... I just think its chipping away at the block until they get a picture of what it is about themselves that is this thing called asd.
Ds is 15.... He is getting there.
We started with books...also contact with other people with asd helped. Positive role models also very helpful... Someone clever he respected. Comparison to lovely family members...tv programmes... Joking about it helped an awful lot too we found. I took him to a talk last year which was good .There are some great things on YouTube too.
It's a bit like sex education... It's not one talk or book is it?.... You just keep chipping away.
We still have a way to go.

PolterGoose Mon 07-Jan-13 19:18:45

Message withdrawn at poster's request.

Handywoman Mon 07-Jan-13 19:25:00

Blimey. This week was my first attempt. I thought a lightbulb might come on (haha!). I clearly have a verrrrrry long way to go (including getting a diagnosis). Do you think my dd2's total unreadiness to imagine a different way of 'being' is pretty ASD-like at this age? Can't work out what's normal at all (she's 8 in March)!!!!

Handy xxx

PolterGoose Mon 07-Jan-13 19:29:22

Message withdrawn at poster's request.

Sunnymeg Mon 07-Jan-13 21:56:24

My lad is able to talk about his difficulties up to a point. He has great trouble prioritising situations, but he has a lot of sensory processing problems which can overwhelm him and affect how he sees things. He complains about school a lot, but this is because he has no
way of dealing with others who act in what appears (to him) to be an irrational manner. When he was younger we encouraged him to write his thoughts in a notebook. We used to get him to write it when he came home from school and then we would discuss it with him after tea each night. To begin with some of the things he wrote appeared to be gibberish, but gradually they made more sense. He abandoned the book a couple of years ago and now we discuss his day when he has come home. One thing I notice is he is always happier to talk when eating, it is almost like the sensory support he gets from eating helps to stop him getting stressed. Hope this helps.

BiddyPop Tue 08-Jan-13 10:47:06

We have "All cats..." but DH doesn't want to give it to DD yet (Dx last April, turned 7 over Xmas). But she is getting better at thinking about things generally anyway (high functioning, and has ADHD as well but meds for that have helped hugely). She does know that we've been to the clinic to "find out how she works" so that we can help her, and accepts that and her meds fine. But we haven't put words to it yet (haven't specifically said Asperger's or ADHD to her), although she does go to support teacher 4 days a week for a session with 2 others since Dx.

I am thinking that we might look at "all cats" soon enough, so that she can at least start to process it herself.

But she does love "The Big Bang" and Sheldon Cooper, and I think she does see similarities in some things with him, so that does help a little.

moosemama Tue 08-Jan-13 12:33:30

Had to laugh at 'accepting that all cats have aspergers, but what has that got to do with me' - that's pretty much what ds1 said! grin

It's been a long road for us as well. Ds1 was dxd just before his 9th birthday in January 2011 and it wasn't until last year that we started reading books together.

He is similar, in that he reads the books and refuses to accept that much of it is relevant to him. He reads something and then says "but I don't do X" or "I don't have problems with Y" - often when he actually does, but isn't aware enough to realise it.

He feels that it's everyone else that has the problem and he is in fact pretty perfect - BUT - conversely he also suffers from severe anxiety and low self esteem, so one poor test result in class or if someone says something mean at school that actually makes it through the ASD filter - and his is distraught. I got cross with him before Christmas and stupidly said that he was 'entitled and spoilt'. What I actually said was that his behaviour at that moment was entitled and spoilt, but he heard it as a direct criticism, went upstairs, wrecked his room and repeatedly hit himself over the head with a large encyclopedia. <serious parenting fail> sad

We are working our way through The Survival Guide for Kids with Autism Spectrum Disorders and will soon be moving on to The Asperkid's (Secret) Book of Social Rules: The Handbook of Not-So-Obvious Social Guidelines for Tweens and Teens with Asperger Syndrome. Although in the early stages of all this we focussed on the positives and bought books that put a positive spin on having ASD like Different Like Me and I am Utterly Unique. I also found Appreciating Aspergers, Looking at the Upside - 300 Positive Points and Parenting a Child with Aspergers - 200 Tips and Strategies useful.

The first book has been good for explaining things to him in simple terms and has raised lots of discussion, both with him and the family as a whole, but he has a tendency to pick out the one thing that doesn't apply to him and declare that as a reason for refuting the rest. <sigh> We are getting there now, through lots of discussions about how ASD is a spectrum and what that means and that no two people who have ASD are the same, they all have different strengths and challenges, just like everyone else.

One interesting thing to have come out of it is that he does accept he has ASD, but strongly objects to the word 'disorder' in his dx. He says it makes him sound like he's 'wrong or messy'. I felt this was a really good insight and we discussed how many people are now calling it Autism Spectrum Condition rather than disorder, for that reason and that some people prefer 'condition' because, Autism is just different - not wrong. I also explained that people will probably find it hard to stop saying ASD, because without saying the whole words it's easy to forget what each letter stands for, so people tend to use the initials automatically, iyswim.

One thing I would say is that there is no way he would have been ready for all this at the age of 8. He is 11 in a couple of months and it's been a very slow, softly, softly approach since his dx, mainly led by him needing to know and understand more. We have also had to do a lot of work on his emotional literacy and self-understanding in order to get him to the point where he is able to think about his feelings, let alone talk about them and how they relate to the challenges he has in life.

Anyway, I'm rambling, so I'll go now, but I hope I've said something useful in there somewhere. blush

Handywoman Tue 08-Jan-13 16:14:08

moosemama I really appreciate your ramblings, thank you so much.

I learn so much on this board <sigh> dunno where Id be without it!

Thanks xxxxxxxxxx

BiddyPop Tue 08-Jan-13 16:31:29

Moosemama, I second Handywoman's appreciation. Especially with the recommendations for other books - even if it's a while before we can get that far.

The clinic's basic response has been "here's the meds, see you in 6 months, we have no resources to do anything else" shock so it's been a huge, and self-directed, learning curve.

PolterGoose Tue 08-Jan-13 18:53:10

Message withdrawn at poster's request.

moosemama Tue 08-Jan-13 19:14:53

blush

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