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Re: Autism

My little sister, I think she is 8, yeah she’s 8 has autism. She is non verbal, does parrot sometimes but generally doesn’t say any words. A couple of years ago she would repeat the Hungry Caterpillar over and over, which is when she started parroting. You still have to encourage her to speak though even if you know she won’t, so sometimes I say
“say please” and she will either sign if she can or repeat what exactly what I said so she will say back to me “say please”, but she usually doesn’t do that.
We are trying to teach her sign but her carers have decided to leave that for a little while. Sometimes I find having little cue cards helps, so cards with pictures that she is expressing a need or a feeling, I get her to help me find which one, it’s quite hard, but I usually pick out a few and then she tells me which one by pointing to the picture. Eg drink will have a picture of a drink, or sad will have a cartoon picture of a sad person.

The things I have learnt:

Getting down to her level, because she is so busy if she doesn't actually see your face and that you are talking to her she will just run off, so you've go down to her level. I guess it’s the same for most kids, it’s intimidating having someone stand over you, but for her she just not realise you are there.
- Giving her options like instead of asking something like, would you like a snack and then making up your mind for her, giving her like 2 choices. and I learnt how she'll say yes or no.
if i ask
"would you like biscuits or a sandwich"
if she wants the biscuits she'll look at my eyes and if she doesn't want the sandwich she'll turn her face right away from me when I suggest each thing.
- We play this game, its with toy cars and they go down a ramp, she likes to watch me do it. and i noticed that she'll look at my face and sometimes touch my cheek if she wants to do it again, if she doesn't want to play she just knocks it off the table, but anyway lol

- also some stuff around recognising when she might be heading for a meltdown and what things to do, it’s quite hard because each scenario is different, sometimes you can tell she needs someone to hold her real tight and assure her she is ok, but other times you cannot get very close to her without her biting, hitting, kicking.

We are trying out social stories too at the moment, im not sure if you know what that is, but its like using pictures to explain what we are doing and the routine so she is aware of whats happening, they use them at her school and her respite programs. So when we first meet for access sitting with her and showing her the pictures and telling her what we are doing. If the situation could possibly change or be unpredictable and it’s unavoidable we skip the social story otherwise she gets ideas in her head. Or I say something like “today we might play games” rather than “today we can play with the cars”. And being specific with times, even though I don’t think she can tell time, maybe she can, we don’t know but telling her “we will be finishing this in half an hour” then 10, 5, 2 minutes. Give her plenty of
warning which is what I didn’t do well with the first and only time I ever took her out myself, I thought I gave her a warning but I wasn’t enough, so when we went to leave the pool she got really really really upset with me it looked like I was kidnaping her.

She is also very sensitive to sounds, which is difficult to accomodate when access is busy with lots of children, I remember once my brother scared her from behind which would scare any kid but eventually they realise it was a joke or for fun, but she squealed so loud, so so loud and had a massive meltdown. So it’s also teaching my other siblings that for her those things aren’t fun, even if they are to the other kids. She also struggles with textures, usually sensory kind of touch and feel stuff works really well like at access we have a box of beads she lovesss to put her hands in but if it’s involuntary like a tag on a shirt or the top of her socks are a tad too tight she really really hates it so you just have to be careful with those things.

Overall, I treat her like any 8 year old little girl, I play games with her, I tickle her, we do colouring in together, but there are certain things you just have to be prepared to deal with and be extra patient with. She’s the best kid, so cheeky, I remember last time at access I took a grape off her plate and she gave me the meanest look, she knows how to plant her feet pretty damn hard on the ground too, i’ll say come on, it’s time to go inside, and she will just stand there shaking her head, and you grab her hand, she doesn’t move haha she’s a little bugger.
Her carers have this story about how she went to respite one day, they were having a picnic, and one of the other children in the program stepped on her hand, and she like bolted they had to chase her then when they caught up her she went full dead weight and wouldn’t get up, they even had to call her carer to come get her or when she ran up to the top of the waterslide and they had to turn it off so she wouldn’t go down it hahaha

@mrmusic@Erin-RO 

 

also @N1ghtW1ng I just saw your toy posts, we are trying to give my little sister similar things, just wondering where you got them from so I can pass it on?? So far the chew toys would probably work well for her because her first reaction to getting frustrated is to bite, so while we try to eliminate that it’s going to be very hard and not always possible, and i’d rather her bite a toy not a person. 

//You can stay afraid, or slit the throat of fear and be brave//

Re: Autism

@j95 thank you so much for sharing that Smiley Happy It's lovely that your sister has
such a loving older brother and a supportive environment Smiley Happy I got my
tangles and slinkies from kmart and a lot of squishy things you can find in
some places. I got a chewie necklace from Stimtastic.com. It is a US store
but the chewy ended up being cheaper even with shipping than Australia
which has Chewigem for chewables and if you google australian stim toys
there are heaps of stores where you can find and buy a large variety of
stim toys such as auditory, visual or tactile (which is the fancy-term for
hands/fidget Smiley Tongue)
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Guess what day it was!!! It was Wear It Purple Day!! Come on over and learn all about what it is and what you can still do!

Re: Autism

Thank you for sharing your experience and learnings @j95 and for being so in depth Smiley Happy

Re: Autism

Thank you @Lan-RO @N1ghtW1ng Anything I can to do help someone else I will 

//You can stay afraid, or slit the throat of fear and be brave//

Re: Autism

That's awesome and really kind @j95 Smiley Happy

Re: Autism

Hey @N1ghtW1ng, thanks for letting me know about Autism Speaks. I had got the information from an Australian based website, however it would appear that they sourced their information from them. Just in case there is any confusion, I do not support or have any commercial affiliation with any organisation in this regard - it was just a quick internet search.

 

@j95 Thank you so much for your awesome contribution mate. Smiley Happy Really good to get this perspective!

 

P.S. I’ve made a slight edit to the original post to clarify the situation. Smiley Happy

Re: Autism

Yesterday I became aware of another of my favourite stims, one which is actually quite interesting to me. (because I don't like sound) and it's tapping my keyboard really loudly. I think of it as being obnoxious typing (does that make sense?) It's like release some of the energy that I would do by using putty or my slinky but I can actually keep typing things Smiley Tongue
Also yelling out frustrations. Just a kind of grunty/scream because it makes my chest feel better (except this one is a feels good but sounds bad so it doesn't happen much/at all) It started at a verrry loud party that I spent the whole night basically shouting and now I like it.
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Guess what day it was!!! It was Wear It Purple Day!! Come on over and learn all about what it is and what you can still do!

Re: Autism

One thing that really sets me off is balloons. Don't get me wrong, blowing them up and playing with them can be quite fun, but it's usually too tempting for someone to pop them right in my ear! I also have a memory of a science workshop in primary school when they blew up a balloon with chemicals and then put a flame to it - the balloon popped with an almighty BANG - much louder than your typical balloon pop. Took me a while to get settled again.

 

Also if you are connecting leads to amplifiers, please turn the amp off before plugging the lead in! The noise that it makes otherwise is absolutely horrendous.

Re: Autism

So, as Autism Acceptance Month draws to a close, I would like to just add a couple of general points about autism and its impact on the wider community:

 

- Having a diagnosis of Autism Spectrum Disorder (incorporating previous diagnoses of Autism, Asperger’s Syndrome and Pervasive Developmental Disorder Not Otherwise Specified) is not necessarily a ‘bad’ thing. It is just another feature of a particular person, like eye colour for example.

 

- A particular person with ASD may have very different needs from another with the same diagnosis - there is no ‘one size fits all’ approach to support.

 

- Many people with ASD will be able to function quite independently, and this should be encouraged and supported as much as possible.

 

- If someone is non-verbal (as the result of ASD or otherwise), that does not mean that they do not communicate, and they may need support in order to meet their needs. It also means that some ‘out of the box’ thinking may be required to support this.

 

- If you are supporting/caring for someone with ASD, sometimes things will go wrong. This does not mean that you are doing a bad job, and it’s important not to take things to heart. These negative experiences provide good learning opportunities.

 

- Carers and supports for people with ASD should ensure that you are taking time out for self-care, even if this means organising respite care for the person you are caring for. You are doing something very special in the community. Please also ensure you make use of appropriate support services if you need.

 

I hope this helps. Smiley Happy

Re: Autism

@mrmusic This is wonderful: "- If you are supporting/caring for someone with ASD, sometimes things will go wrong. This does not mean that you are doing a bad job, and it’s important not to take things to heart. These negative experiences provide good learning opportunities."

 

Thank you.