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Amazing book- Lucy's story

(31 Posts)
Jimjams Fri 31-Dec-04 11:20:36

Someone gave me this book for xmas. I am only half way through but it is amazing. Lucy appears to be very close to ds1 in terms of position on the spectrum. She's still pretty much non-verbal as an adult, but has written this book (basically she processes spoken language differently from written language- learned them seperately as well). It is such an eye opener- and has given me a much better understanding of the (totally freaky and scary) sensory problems he faces. Also interesting as she compares herself to her 4 NT sisters - and explains where her processing is going "wrong" (a lot of books written by adult autistics are either way more high functioning than ds1, or don't really see anything wrong with their way of doing things- she continually compares how she processes information with the way her sisters do).

For anyone with a non-verbal child- I would say get this book. I need to read it again to take it all in (as the language processing stuff in particular is bizarre)- but it has completely blown me away.

coppertop Fri 31-Dec-04 11:34:07

I've just read the review on the link and no wonder you've been blown away! Whoever gave you the book for Christmas must know you and ds1 very well. It sounds like a really good choice they made.

Jimjams Fri 31-Dec-04 13:28:42

His old nursery manager gave it to me. I can't believe how many of his idiosyncracities she shares- for example when cross she sings (or at least used to- not sure if she still does- things like Waltzing Matilda). When cross ds1 usually sings Old Macdonald, although at the moment that's been replaced by jingle bells!

The whole language thing is really weird as well but I think may be a very good explanation of why ds1 finds learning spoken language (both receptive and expressive) so hard.

Jimjams Fri 31-Dec-04 13:35:13

oh coppertop- she talks a bit about pointing as well- and why she didn't point- the reasons were a bit unexpected (to do with her not having very good body sense) - I'll re-read that bit and post again later- as I know you are interested in pointing at the moment.

coppertop Fri 31-Dec-04 13:39:12

Thanks, Jimjams.

PaRumPumPumScum Fri 31-Dec-04 13:58:55

Sounds like a really interesting book, jj. Will get hold of a copy and recommend to all my friends,

InternationalGirl Fri 31-Dec-04 16:28:12

Looks like a great book - I'm going to buy it, read it and give it to a friend. She has a non verbal autistic son and is interested in alternative forms of communication and just what is possible with a practically non verbal person with autism. This will really give her some hope and maybe some more understanding of her boy and how he processes things.

Thanks for sharing it with us.

Saker Sat 01-Jan-05 18:31:56

That does look really interesting and the book sounds like it could give so much insight into autism. I'm also interested in what you say about pointing because (as you know) I'm always worrying about why ds2 hardly points although he is not autistic. He has problems with proprioception, body sense etc and one of the reasons that had occurred to me was that he found it quite hard to actually track visually and /or organise his movements to point.

aloha Sat 01-Jan-05 18:42:35

My ds, mildly dyspraxic with possibly sensory issues but certainly not autistic, rarely points and also seems to find it hard to follow my points. I think the body/sensory awareness thing is very interesting.

Blossomhill Sat 01-Jan-05 18:57:23

I have heard that pointing is really significant. Dd does (although not until she was bout 3yrs) and has for a while pointed and follows my point too. I just have never understood why it's so significant though.

Saker Sat 01-Jan-05 20:12:26

BH, as I understand it the pointing thing indicates
1. joint interest - so an actual interest in showing you something which all NT children have from an early age
and
2. theory of mind - the understanding that you don't know what someone is actually thinking so there is a need to point to draw your attention to it.

But from what Jimjams mentioned the book may contradict this suggesting that Lucy didn't point because of body sense???

This kind of makes sense with ds2 because he does tell me things and does point frequently to pictures in book but has amazing difficulty following a point and hardly ever points if he can describe instead.

aloha Sat 01-Jan-05 20:20:54

My ds would also rather describe something at length than point and really does struggle to follow a point (very frustrating re squirrels, rainbows or even where his shoes are ) and he really isn't at all autistic .

aloha Sat 01-Jan-05 20:21:19

BTW Jimjams, where is that baby of yours???

Blossomhill Sat 01-Jan-05 20:24:23

Thanks for that Saker
I am beginning to think that dd does have a theory of mind but not sure if I am right. I know about the Sally Anne tests but she does get confused even when I ask her due to the language difficulties.

Jimjams Sat 01-Jan-05 20:36:23

Think I imagined some of the pointing stuff- she says that she doesn't point (although she was taught to- like ds1- he can point now), but doesn't really say why she doesn't. However she does say that when she was younger she couldn't really see anything that was in her central visual field- she needed to use her peripheral vision- which would make pointing difficult. she also said that she had no idea that her fingers were attached to her shoulders via hands and arms - she just thought she kind of went shoulders then fingertips. Again that would make pointing difficult. Those kind of sensory problems are common in dyspraxia as well- so could explain why aloha's ds1 and saker's ds don't point very often.

Contractions seem to be hotting up a bit tonight aloha (about bloody time). Just waiting for ds1 to sleep so I can hoover!

Saker Sat 01-Jan-05 20:37:52

ooh good luck if it hots up even more !!!

aloha Sat 01-Jan-05 20:40:42

I can see from the way ds attempts to climb and the way he gets himself stuck with his limbs under him sometimes that he doesn't quite 'get' how he is put together! He's improving a lot atm though - he's nearly jumping!
Are you attempting a record attempt for world's longest labour Jimjams??? This hoovering fetish must mean something though, eh? Good luck. Hope for happy news soon. I can't believe I've got a bit over five weeks to go...I'm so big!

coppertop Sat 01-Jan-05 20:56:56

Ds2 seems to have made quite a bit of progress recently with pointing. He can now follow a point more often than not and will sometimes point at things he finds interesting. This is something that he has had to be taught to do rather than something he does instinctively. I know it sounds stupid but I'm now worrying that my early intervention might stop him from getting a dx if he is autistic IYSWIM. The appointment for his assessment has just come through and will be happening next month - just after his 2nd birthday. I'm hoping that they won't look at him, see him pointing to his nose when asked to and think that I'm just being overanxious.

Good luck with those contractions, Jimjams.

Blossomhill Sat 01-Jan-05 21:38:35

Can I just clarify something about following a point please? So if I want to show dd something and say call her name and point. If she looks at what I am pointing out by following my point then that's what it means?

Coppertop - sounds like ds is making good progress. Fingers crossed for you xxx

Jimjams - Sending even more labour vibes your way

Jimjams Sat 01-Jan-05 22:21:19

BH following a point means if you say "look" and point they'll look at the object you're pointing at (and not just at the end of your finger). DS1 still finds this incredibly difficult- especially if the object is distant- he's fine with close ups like books and pictures.

Blossomhill Sat 01-Jan-05 23:23:47

Thanks Jimjams

Saker Sat 01-Jan-05 23:38:13

Ds2 doesn't look at my finger if I point, he knows he's looking for something but doesn't seem to get the right direction, or it takes him a lot longer to work it out. That was one of the reasons I wondered about it being more of a visual thing rather than a conceptual one.

Good news about the jumping Aloha; Ds2 has managed to get off the ground slightly a few times recently as well .

Jimjams Sun 02-Jan-05 09:33:21

The interesting thing about thie book is that almost all of Lucy's autism is as a result of her sensory problems rather than conceptual ones (she has some, but a lot of those stem from having had movment/visual perception problems from birth). And she is pretty severely autistic (I'd say as autistic as ds1- would say almost exact same spot on the spectrum). Almost all of her autistic behviours (maybe all??) - including things like being unable to wait, obsessions with objects, shouting out strange noises result from her sensory difficulties.

Interestingly after completing AIT her visual problems were reduced as well- and that allowed her to process speech more effectively. We've noticed that since August DS1's receptive (not expressive) language has increased considerably- and he is tuning into general conversation for the first time ever (will respond appropriately to general directions, or to general conversation between ourselves). I wonder now whether that's because the small amount of vitamin A we have been given him to impprove his visual processing has alsoo affected his ability to process speech.

Jimjams Sun 02-Jan-05 09:41:14

The one conceptual problem she does have/had is a complete lack of motivation to do something- so for example to get dressed, or to reach out and take something offered to her- she's always needed (and still does need) a lot of physical prompting. She also had a very poor understanding of cause and effect and says herself that she responded very well to the structure of the autism programme that she attended - because its structure helped minimise the effect of that. Interestingly she talks about her need to be bullied into doing things (and for her aversives-- the threat of rice for tea for example) was often more effective than positive reinforcement when her behaviour was particularly bad (because she quite enjoyed being bloody minded and difficult from the sounds of it).

aloha Sun 02-Jan-05 10:23:17

Ooh, Saker, snap! That sounds just like my ds. Trying to get him to see a rainbow by pointing at it is a real recipe for frustration.

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