Saturday, February 12, 2011

Learning About Autism

Sorry things have been a bit quieter on the Blog than usual, we've had a big couple of weeks that have seen our little Bubble diagnosed with high functioning Autism.
While her diagnosis hasn't come as a surprise to us (we have been on the 'specialist merry go round' with her for a few years now) there is a lot to find out in terms of local services and where to go from here.
As I'm sure you have all worked out already, she is an amazing, clever, hilarious little person and all we feel at the news is relief in being able to move forward.
ASD is diagnosed according to a deficit in three main areas of development; social communication, interaction and imagination.
Autism is a spectrum disorder which means every child (or adult) can be vastly different to the next in terms of their abilities, traits and behaviours and the severity of how their condition affects them.
Before having my own children I worked for over 7 years with many kids with ASD, and meeting each child for the first time always redefined what my idea of Autism was.
As a family we are doing our best to embrace Autism, we just can't see it as a negative when it is what makes Bubble who she is.
Even before her diagnosis we marveled at the way she seemed to see and interact with the world; fearing things that didn't need to be feared yet showing no fear for other things that required caution, obviously wanting friends but not always knowing how to go about it, interests such as weather maps and solar systems at a very young age and reciting the alphabet before she could put two word sentences together.
Unexplainable melt downs and sensitivities to things we couldn't see or hear, seeming to be deaf when her hearing was perfect, a strong need for things to be in their correct place at all times and for daily activities to be done just so, picky eating habits that resisted all efforts otherwise and an amazing memory that astounded us constantly. She is surprising, intriguing and often frustrating all at the same time.
It's not all sunshine and lollipops of course, I hope that isn't the image I'm portraying. We are confident and positive about Bubble's future, but there have also been many tears and battles and there will be plenty more I'm sure. In fact I think I owe my sanity to a very supportive family, great bunch of friends, India Arie on low at midnight and copious amounts of chocolate :-)
There is no reason Bubble won't live just as long and happy a life as the next person and we are very grateful for that, as well as very aware that the situation is so much worse for many other families.
I am filled with admiration for any parent who handles these challenges because it does make an already difficult job (parenting) even more difficult.
I don't mean to lecture or go on, there is still so much I can learn myself, but I would love for anyone who wants to know more to have a look at some of the links listed below;

Autism Spectrum Australia

Autism Factsheet

Autism and Aspergers Support Group

Autism Advisory and Support Service

Fed Up With Additives -
different things work for different families, but we are big advocates of Sue Dengate.

Stuff With Thing -
a great Blog about everyday life living with (two beautiful) Autistic children.

The Toy Bug Facebook Home Page -
The ToyBug was created by the mother of a child with Autism who struggled to find fun educational sensory toys for his therapy. Lots of great information and links as well as great toys, and a very wonderful lady also.

I would also love anyone with their own experiences or links to post them here in comments or email them through if you'd rather not comment publically. Im very much an information gathering type person (ok, ok, a nerd ;-D) and don't believe you can ever know too much, especially about a topic as diverse as this one.
So please be patient with us while we adjust and get our groove back, we'll be back at the craft table with bells on (literally probably ;-D) very soon.


  1. Hi just fell onto your blog.You sound like you have two specials little girls. Sometimes we come across things that are hard, but your two girl have a very special mum. Keep smiling

  2. I'm wishing you and your sweet daughter all the best. You have such a positive outlook about it, and she's lucky to have a Mom like you!

  3. Thankyou Jane and Rosie (and those who have emailed) your lovely words really mean a lot. Bubble is going really well and hopefully will keep doing so, the more fingers crossed for her the better though! :-D Hope you are both having a great weekend x

  4. Ah Caz,
    I was wondering where you were. Bubble is so lucky to have you as her Mum - really, she's blessed, and so are you for having such a special girl (but you know that!). Thinking of you all, and I'll be looking forward to more posts (when the time is right).

    x Sarah

  5. Caz, I cried while reading your post because I could have replaced my son's name with your Bubble. Your post is him exactly, even about the solar system. He is now 4 and I have had questions about some of his behaviors for some time now. Just wondering...where do I start? His doctor? He is not in school yet.
    Thank you for writing this and sharing your family story.

  6. Hello Caz,thanks for commenting on my blog.I am sorry you are going through this but you have a really positive outlook and also information.. Your daughter is very lucky. All the best.

  7. Thankyou Sarah, you are just so lovely :-) Hopefully we'll have our rhythm back soon, the great news is there are plenty of services around, so we are really lucky!

    TimeForPlay - oh how I wish I could give you a hug or at least sit down with a coffee, it's the worst feeling to think something might be wrong but not know exactly what. The best place to start is with your family GP, ask for a referal to a developmental paediatrician, preferably one who specialises in ASD. I found it helped to keep notes too, it was hard to explain exactly what I thought wasn't right because there were so many little things, so over the course of a week I wrote them down as they happened. It made the appointment so much easier. We started with Speech Therapists because Bubble has a speech delay, so if your son does also a referal to a speechie and an Occupational Therapist is a good idea. Goodluck, I hope you get some answers one way or the other, keep me posted :-) x

  8. Thanks for stopping in and for your kind words Isil :-) I enjoyed your beautiful Blog, will be looking forward to reading more!

  9. Thank you Caz. Began a journal today, great idea. I will keep you posted. Again, thank you for sharing your story. It has helped us begin our journey.

  10. My son (Gus 3 3/4) was just diagnosed today. HFA/Aspergers. And your description could almost be him - not so much the solar system but pretty much the rest of it. Huge learning curve of where to now and preparation for school. Big change from our plans for this year ie him thriving at kindy and me back to pt work while hes at kindy and his big sister at school. All that on hold for now as we pull him out of his (beautiful) kindy and go to Plan B. Sadness for lots of things but glad to have the dx and a plan steps to take to hopefully turn things around
    Thanks for your timely post and with the info/links. All the best x

  11. Time For Play - goodluck mate, I would love to hear how everything goes for you and your family x

    Michele - thankyou so much for sharing your story, I have emailed you x

  12. Caz, I'm so sorry to hear about the diagnosis, she is one very lucky little girl to have an awesome super dooper Mummy like you. You are doing a fabulous job xxx

  13. Welcome to the world post diagnosis. Where people may actually listen to you now instead of being thought of a nuoritic mother. (well that is how I have felt at times)
    My son Archie 5 has aspergers and my daughter Charlotte-Rose nearly 3 is in the process of a diagnosis.

    The best thing I have found is a good Early Intervention centre is the most wonderful thing.
    Do you have a PlayConnect near you. This playgroup I find is wonderful as you can hang with other's and not feel wierd.

    Best of luck with this journey

  14. Thankyou Kylie xx

    Oh Sarah, I know exactly what you mean! I felt such relief at the diagnosis because not only did it mean she could finally get into services and therapies that were previously off limits but I might not have to listen to quite as much rubbish from various people anymore either - can't tell you how sick of the 'theories and opinions' I was getting. The diagnosis has been so good for me as well as Bubble because I don't feel nearly as alienated now as I did before either, especially now that I have discovered how many amazing Mum's like yourself are in the same camp.
    We're still waiting for ASPECT to get in contact so we can start Building Blocks and find out what services we have locally, but I might do some googling and calling around to see if we have a PlayConnect here - it sounds great!
    Goodluck with your daughters diagnosis, I hope you are feeling ok about it <3 We are pretty lucky to get to raise such amazing kids aren't we :-)