Autism doesn’t end when you turn 7! PSA from Annie

by Marita on December 21, 2011

Post image for Autism doesn’t end when you turn 7! PSA from Annie

Today Heidi received an iPad, thanks to the FaHCSIA Helping Children with Autism Funding.

I took a walk with Annie this evening and we discussed why Heidi got an iPad and Annie did not – we simply couldn’t afford to buy one ourselves. Annie asked how we had gotten the money for Heidi’s and I explained about the Helping Children with Autism funding and how it ended when the child turned 7yo, but that Annie had never received it because she got her diagnosis after the age of 6.

Annie was very upset, not that Heidi recieved an iPad (although she is a little envious, as are we all), but at the unfairness of the system. She asked me to record this short video and put it on YouTube to explain her feelings on the matter.

If you are reading from RSS reader / email feed please click over to the post to see the video.

{ 31 comments }

S December 21, 2011 at 6:40 pm

Exactly right. Go Annie

Marita December 22, 2011 at 5:06 am

She gets it from your side of the family. :D

Kate December 21, 2011 at 7:23 pm

Well said Annie.

And the most heartbreaking thing as a parent to a newly diagnosed child… the time it takes to truly accept that autism IS for life. At least that has been my experience so far.

I wouldn’t change my children for anything, but I sure would love some more support in accessing the therapies and other things they will need for the rest of their lives.

Marita December 22, 2011 at 5:12 am

It is such a roller coaster ride, be nice to have a few more seatbelts – in the form of support for kids who are diagnosed after they turn 6.

Veronica December 21, 2011 at 7:25 pm

Exactly.

Marita December 22, 2011 at 5:54 am

So proud of how she moved past personal envy to see to the bigger picture.

Amy December 21, 2011 at 7:43 pm

Go Annie!

Nothing else to add besides I agree with everything that she said!

Marita December 22, 2011 at 5:54 am

thank you

Kirsty@MyHomeTruths December 21, 2011 at 8:20 pm

So true. The truly sad thing is the lack of support for adolescents and adults on the spectrum – I’m not looking forward to continuing to fight the system for funding and assistance well into my children’s adulthood. Annie is right, the condition stays for life, so should the assistance.

Marita December 22, 2011 at 5:20 am

I’m already fretting about adolesences. Our Psych wants regular visits in lead up to puberty and beyond as that is a very hard time with all the hormones and need to explain why things happen.

No idea how we will afford those visits, so for now I’m putting the worry about it in a box marked ‘later’. Trying to get a handle on the things that need worry ‘now’.

Karna December 27, 2011 at 10:04 pm

Kirsty
All of us who have either kids or adults with ASd would agree with you. I was especially annoyed as I was part of the campaign to get the early intervention funding and my son who is now 11 missed out by a year I think. Kids may improve but I have met none who actually are cured.

However the parents I know from my son’s school who also have kids with Down’s or cerebral palsy were also upset when the autism funding came in as their kids’ needs are just as major. At least the early intervention funding was extended to a range of other disabilities.

However even if you can get the funding where I am in Canberra the therapists are either non existent or have closed their books so it is catch 22. This can be blamed on the local government who runs a hopeless therapy service and have not encouraged private therapists by providing the necessary course in the Canberra tertiary sector by social policy. And so many parents like Marita who have kids with an ASD cannot work as their kids have high care needs which impinge on your ability to work. And so it goes on,

I hope the NDIS will actually improve the lives of all disabled Australians and those who care for them and it is funded not a pipe dream.

Karna

traceyb65 December 21, 2011 at 10:16 pm

smart girl! xt

Marita December 22, 2011 at 5:58 am

She sure is. :)

Holly December 21, 2011 at 11:11 pm

I agree that there needs to be support for all ages however the facsia funding is aimed at ear intervention so there does need to be a cut of point, it is proven that early intervention can be so vital and make such a difference so the funding is very important to help provide intense therapy before school age.

Of course there should be therapy and support options after 7 but it isn’t unfair that help is provided for early intervention.

Can they share the ipad? My daughter is getting ne but ther eis no way it will be ‘her’ ipad, she will just use it as needed.

Good luck. :)

Marita December 22, 2011 at 5:16 am

I friend on facebook suggested that funding should start from diagnosis to x number of years after.

That would make more sense in my opinion.

Early intervention does work – we experienced that with our youngest. But children who are diagnosed in primary school would benefit from intervention too and there is no way we can afford all the therapy Annie needs, so we do small amounts with professionals and try to follow up at home as best as possible which is in no way ideal and adds more stress to any already at capacity family.

Heidi will be using the ipad in the classroom as a learning aide, there will certainly be times at home that they can share it. But it was purchased to assist Heidi with communication and learning to help her keep up with her peers.

Sarah @fignutmum December 22, 2011 at 4:21 am

Well said!
I understand why they push the money in the early years.
BUT
these kids still need assistance after they turn 7. So there needs to be something.

Marita December 22, 2011 at 5:17 am

yep those 20 visits covered by medicare run out very quickly when you have to see OT, ST and psych on a regular basis.

frogpondsrock December 22, 2011 at 6:26 am

Yes. :)

Amanda December 22, 2011 at 6:40 am

Amen.

Gavin Bollard December 22, 2011 at 7:09 am

Wow… Well done Annie… very articulate. I wish my boys could be such good advocates for themselves.

BTW: An Ipad costs about $700 in Australia. An android pad however costs about $100 (see: https://www.adelong.com.au/index.php?cPath=429).

It’s not exactly the same obviously but who’s arguing at that price. I got one and it’s hard to keep the kids off it.

Kate @ Puddles and Gumboots December 22, 2011 at 8:58 am

I can’t seem to get the video on my phone but will try later on the computer, I can understand the early intervention funding but it should continue past 7

Annelise December 22, 2011 at 9:35 am

If Annie ever decides to run for Prime Minister she has my vote; we could use a few people who are willing to look beyond their own desires and fight for what is fair and right (and challenge gender stereotypes!). Anyone who thinks that people with Aspergers aren’t capable of empathy needs to see this clip; we may do empathy differently, but we definately do it. Annie makes me proud to have Aspergers.

I think the idea of funding for X number of years after diagnosis is a brilliant one; in a perfect world the funding wouldn’t run out, but if we have to prioritise then it makes sense to provide support for people dealing with a new diagnosis. Increasingly this means support for children under 7, but it needs to allow for those who slip the net.

Dell. December 22, 2011 at 10:02 am

What a well spoken child and how proud you must be of her and take credit yourself also. Let’s hope Annie gets an iPad. xo

Simone December 22, 2011 at 11:33 am

I would love to hear anyone’s comments on the benefits of an Ipad (or andoid). I am considering it for my 5yo and will need to explain to the Speech Therapist what apps will benefit her autism and auditory processing. Would appreciate any comments.

Gabrielle Bryden December 22, 2011 at 1:52 pm

Here is a link to the best ipad apps for autism and aspergers syndrome http://www.bookroomreviews.com/2010/08/16/best-ipad-apps-for-autism-and-aspergers-syndrome/ Many early intervention programs (eg. AEIOU) are using Ipads for all their children – apparently they are one of the best things that has happened to assist with communication etc., I am getting an android for my son who has autism for Christmas – I would have rather had an Ipad but there was a big difference in cost – we’ll see how it goes (but he is high functioning and doesn’t need one as much as some kids).

Simone December 23, 2011 at 7:05 am

Thank you very much Gabrielle. That’s a huge help.

Vicki December 23, 2011 at 1:01 pm

I have been looking at the best ones to get for my Pre-Primary class. I have an Android at home and the kids at school loved using it. However I am leaning to towards the iPads for my class purely for the much larger range of apps for the younger age group. My own children are 10 and 13 and the Android apps are great for them but the educational and special needs ones for iPads seem better.
PS If anyone knows of great Android apps they would recommend I would love to hear about them!

Sam December 22, 2011 at 11:43 am

Well said Annie. Very proud!

Gabrielle Bryden December 22, 2011 at 12:07 pm

Wow, that moved me to tears. Go Annie – I know where you’re coming from. There are lots of things that are unfair about autism and we all need to let people know about them like you are doing.

Danielle Quarmby December 22, 2011 at 6:57 pm

Good point and well said, Annie :)

We’ve had this exact issue arise as I picked up my son’s Fahcsia funded ipad yesterday, but we haven’t sat down and introduced the kids to it as yet, still trying to figure out the explanation / sharing part of it (I’m glad they can share during the holidays at least). My daughter was diagnosed – after a 6 month process – at the same time as she turned 6, so her therapies are chosen with a bit more caution due to the investment needed. I’m bracing myself for her OT bills next year, as it is on top of the psychologist and speech visits she also needs. And when it comes to Ash’s 7th birthday next August – at which time his funding is no longer available – I am currently taking the approach of fingers in my ears ‘la la la la’!

I’m thrilled to hear that Annie has been gifted her ipad by this community of supporters :)

Gavin Bollard December 23, 2011 at 6:24 pm

I’ve only just begun using the android and while I suspect that at the moment the ipad is probably better, the fact is that you can buy 6 android pads for the cost of a single ipad.

I haven’t tested any autism apps but a quick search (ie: less than 30 seconds) on Google turned up these;

http://www.androidzoom.com/android_applications/autism
and
http://www.myautisticapps.com/

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