Autism advice appreciated, please!

[SweetTalkinWoman]

It?s looking very likely that my DD, who turned 3 last month, will be diagnosed with ASD towards the end of the year. I?m getting my head around it and we?re getting some help through portage and speech and language therapy. I?m just looking for a bit of advice really about various things. One of the things we have identified through portage is that DD reacts better to visual prompts and benefits from early preparation of what?s going to happen next, so I?m setting up a visual timetable. Will this work better if it?s made up of photographs of ?real? things, such as DD?s own bed, our own bath/car/local park etc, or will it have the same effect if I just print out images from the internet?

Next (!) ? I am worried about the effect DD?s (probable) autism is having/will have on DS, who is 18 months old. He would do anything (and does anything!) to get her attention and looks so hurt and confused when she runs off or screams, and is confused when we have to leave parties etc because she?s distressed. Will this have any long term effect on his development/social skills etc? I should add that they are both at nursery for 3 days a week, so he does get to mix with other children. He?s such a sociable chap ? the complete opposite of DD!

Finally for now, I find it frustrating being at home with DD and not being able to ?play? with her. All she wants to do is sit behind the coffee table, or on her bed, with her little bag of things (Postman Pat figures/buttons/sparkly bits) and take them out, line them up, and put them back in the bag. Or scribble on a piece of paper with a pencil. Every time I come near she cries and pushes me away, or picks them up and moves somewhere else. She?s the same at nursery, does her own thing, but is happy. When I?m at home, do I just make sure she?s safe, fed, watered etc, but just let her get on with what she wants to do? It?s most frustrating when DS is napping because I feel I should be giving DD some 1:1 time, but am I just annoying her?

I?ve spent time looking at the NAS website, but if anyone can recommend any books, that would be appreciated. I am being booked on an EarlyBird course for January, in anticipation of a diagnosis of ASD, and think this will help greatly.

Better get back to work now - just been pretending for most of the morning!!!

Hello, welcome to the SN board

It's good that you are getting help via portage (ours was a lifesaver too!). wrt the visual supports - only you willknow.

initially, my dd needed things to be photographs, as she could not generalise her knowledge - she knew her bed was a bed, but if I had just bunged a photo of any old bed on there, she would have been confused. likewise for line drawings. so we started out using photos. now (a few yers down the line) she is brilliant at generalising her knowledge, and we only need to use specific photos if she is very stressed out, or the situation is terrifyign for her.

I usspect your points 2 and 3 and linked a bit. your dd does not seem to want to interact with you or her brother. this isn't personal, just the way she is. you need to work on it slowly, slowly.

have you looked at anythign by Stanley greenspan? His Floortime stuff is very good, adn pretty much centered on playing alongside/with children, taking their lead, adn building up a trust.

By slowly getting her to tolerate you plaing alongside, you will eventually be able to (even for a fleeting moment!) share an interest in something. you can't change it all at once, but tiny tiny steps will get you there.

eg my dd1 was obsessed with posting things in her toy postbox. initially, she would scream if I tried to join in/help in any way (even though she couldn't always post the things herself!) I worked on her letting me hand her things to post (no other interaction) - I was just there to pick things up and hand them to her. then we started work on gettign ehr to acknowledge I was there.

a long while after that we worked on her labelling what I was giving her, and built this up into a 2 way exchange of information. or I would give her something to post, then she would give me something, etc.

I found the Jessica Kingsley publishers good for books - a big range of everyhitng form play ideas, to learnign issues, family/sibling stuff, etc.

Hello there, and welcome! Very good advice there - I think some kids respond better to photos, others to drawings, or move from one to the other. DS preferred drawings, and the added bonus was that they often had the word written on them, which has facilitated reading.
I'd try both for a couple of things, and see what works. Remember that you can download lots of things from the web for free.
I love Greenspan's books. I also found the Hanen books ('More than Words') very useful and practical exactly for the kind of situation you describe. They're not cheap - you can get them cheapest from the Winslow catalogue (find it on google).
DS is an only child, so no experience re siblings I'm afraid, but the play ideas often include tips on how to get siblings involved.
Good luck!

Look at ((www.senteacher.org/Worksheet/6/PECS.xhtml this page.))

Ive used a few different free downloads here, the photo cards one you can change the picture and words to your own needs...make any cards you like! :)

I so cant post that as a proper link! lol!!!! Doh! (blush)

I'm on the autism spectrum.
Good advice so far.
Because we are so specialised and our brains concentrate on detail that yours cannot see, hear, sense, smell etc, our world is very different to live in.

Whilst she's focusing on those small things of hers, she's trying her best to make sense of the world by using them. It might look repetitive and pointless, but often children will make the smallest changes to things, then another small change, then another, testing and re-testing the systems and objects to see if they look different, behave differently etc.

If someone else comes along and moves them, it's like some scientist setting up a painstaking experiment of test tubes and gizmos and planning the exact sequence for weeks...and someone else comes along and moves it all so that he/she can't use it as an experiment any more. The scientist would be near-hysterical, and so are we.

Playing alongside us is how we play. Phoebe Caldwell is another good name to look up - she has some stuff on the internet about her intensive interaction work, showing that if you mimic what we're doing, quietly and without any fuss or eye contact, it can be very fascinating. Why? Because then you are part of our learning process - if we do something, so do you. That's observable and measurable and we can get our confidence in you being predictable.

Once we're confident that you will only do X and Y, we can start to trust you a little bit more each time and you can expand what you do a little bit more.

It's so hard to explain the pain and fear if things happen too fast or too unpredictably for us. We really don't mean to be rude or unco-operative, we just can't play the way you and the others do at first.

But as we grow, so we learn more and more ways to overcome it and play with others. Have confidence that the child you have now will grow and develop, and that what she's doing is just fine for her right now.

Wow - thanks so much for the replies . I'm new to posting on the SN boards but have been lurking for a while - in denial about DD I think. Silverfrog and SC13 thank you - I have been looking at those books and other downloads during my lunchbreak, and Woolytree - that looks very interesting and great that these things are accessible for free!! It's all very new to me .

Amberlight - thank you so much for your post because it really helps to make sense of what DD is doing, and why she might be doing it. I watch her and think "She must be so bored" and wade in to "help" stimulate her - no wonder she gets distressed!

Playing alongside and mimicking (sp?) are what the portage worker advised too, but I think I just get impatient and mess things up! It's going to take a lot of patience and understanding on my part, and these posts have really helped me to see things from her point of view and why it's important. I just want my gorgeous girl to be happy . This is all very encouraging - thanks again xxx

Hi, i have 2 dd's with ASD. Dd2 was diagnosed at the age of 3 and was non-verbal, lined up toys but did not play with them. We started using time tables and PECS with her at the age of 2.5, we started with photo's and then moved up to PECS symbols. She picked it up very fast.

We started using floor time and ABA therapy. Before this dd2 would just sit on her own arranging toys on the floor. Now she is playing with toys using imagination and will play simple board games (orchard games) with me or her sister.
We started with mimicking/playing alongside, it took a while and then one day (when dd2 was arranging things on a picnic blanket) she noticed me mimicking, she made eye contact each time she moved an object and started to laugh, from then on her play skills have got better and better.

Dd2 is now 4.5, she still loves arranging toys and has now moved on to arranging numbers and letters but she also loves to play with her toys and her sister.

Sorry Marne - haven't been able to get on PC over the weekend! Hurrah for work....

I am encouraged reading about your DD's playing skills and thanks for those links. Interesting to read that some have even lost their autism diagnosis after successful therapy.

I feel so relieved that my health visitor took my initial concerns seriously and that I am getting help with DD to give her a headstart and get the most out of her.

Thanks again ladies!

Hi Sweet & welcome to the SN Board.

I can only offer a few pointers for you at this stage.

First - Amber helped me & my childs teachers to understand the sensory aspects which have a massive affect on an autistic person. (Hi Amber & thanks again).

Book: Google "Temple Grandin", an american woman with autism who shows that there is no end to the possibilities. She seems to become an expert in every field of her interests.

Connecting & Playing: Best advice I had was to "Go into their world to connect with them first and eventually you will be able to lead them into yours". Which does sound more than a little spiritual but basically means that you just copy them / sit alongside them and then they will eventually find you interesting.

Aim High - Don't let a diagnosis mean that you underestimate your child's potential. You will both grow and accept and adapt and find many ways to compensate. Your AS child is capable of having a happy life.

Family - My child also has a younger sib who is emotionally very mature, shows great empathy and has a fantastic sense of humour. I sometimes wonder if this would have been the case if my DS were not ASD. Just remember to make 1-2-1 time for sibs.

Don't let it be your life. Enjoy your family and don't forget to feed the ducks sometimes.

I'd just add:
Remember children change.
Don't try to second-guess at this age what the rest of her life will be like.

My 13-yr-old son (with Asperger's) has just been on a week's Tall Ships cruise, sleeping below-decks with a dozen other teenagers he didn't really know, and eating strange food from the common stewpot. His end-of-cruise 'report' says he was a 'great team worker, a good communicator and a pleasure to teach' -- which isn't quite the gloomy picture of autism we had just after diagnosis, and is going to astonish his primary school staff if I take it along to show them!