• Storytelling & Memory Keeping
    • Digital Scrapbooking Hybrid Scrapbooking Mobile Memory Keeping All
      December Daily

      What is December Daily?

      September 12, 2021

      Digital Scrapbooking

      Digital Scrapbooking Freebies are out there – Persnickety…

      July 18, 2018

      Digital Scrapbooking

      Project Life Digital – Freebies Are Out There…

      October 21, 2012

      Digital Scrapbooking

      Digital Project Life – How to get started?

      October 14, 2012

      Hybrid Scrapbooking

      Favourite Scrapbooking Tools – Silhouette Cameo 4

      September 13, 2021

      Hybrid Scrapbooking

      What is December Daily?

      September 12, 2021

      Mobile Memory Keeping

      Project Life App

      August 2, 2015

      Mobile Memory Keeping

      How to do Project 365 and how do…

      January 3, 2012

      Storytelling & Memory Keeping

      Favourite Scrapbooking Tools – Silhouette Cameo 4

      September 13, 2021

      Storytelling & Memory Keeping

      What is December Daily?

      September 12, 2021

      Storytelling & Memory Keeping

      Digital Scrapbooking Freebies are out there – Persnickety…

      July 18, 2018

      Storytelling & Memory Keeping

      2017 Project 365 – Preparations and Lessons Learnt

      December 31, 2016

  • Projects
    • December Daily Photography Project Life and Project 365 Wordless Wednesday All
      December Daily

      Favourite Scrapbooking Tools – Silhouette Cameo 4

      September 13, 2021

      December Daily

      What is December Daily?

      September 12, 2021

      December Daily

      Merry Christmas Everyone!!

      December 20, 2011

      Photography

      Digital Project Life – How to get started?

      October 14, 2012

      Photography

      Wordless Wednesday – Thomas & The Train Shed

      December 21, 2011

      Photography

      Wordless Wednesday ….

      November 16, 2011

      Photography

      Wordless Wednesday

      August 24, 2011

      Project Life and Project 365

      Favourite Scrapbooking Tools – Silhouette Cameo 4

      September 13, 2021

      Project Life and Project 365

      Digital Project Life – How to get started?

      October 14, 2012

      Project Life and Project 365

      How to do Project 365 and how do…

      January 3, 2012

      Wordless Wednesday

      Wordless Wednesday – Thomas & The Train Shed

      December 21, 2011

      Wordless Wednesday

      Wordless Wednesday ….

      November 16, 2011

      Wordless Wednesday

      Wordless ….

      October 9, 2011

      Wordless Wednesday

      Wordless Wednesday – Miss Outside

      September 21, 2011

      Craft Projects

      Favourite Scrapbooking Tools – Silhouette Cameo 4

      September 13, 2021

      Craft Projects

      What is December Daily?

      September 12, 2021

      Craft Projects

      Digital Project Life – How to get started?

      October 14, 2012

      Craft Projects

      How to do Project 365 and how do…

      January 3, 2012

  • Life
    • Community & Kids Disability Grateful Inspiration Laughter, Song & Dance Mind & Spirit Play & Rest Technology Travel All
      Community & Kids

      Carers Allowance & 2018 Federal Budget

      July 19, 2018

      Community & Kids

      Pool Safety … Is Your Pool Ready For…

      October 19, 2012

      Community & Kids

      Autism and Travel Insurance

      October 4, 2012

      Community & Kids

      School Holiday Ideas – Thomas & the Train…

      September 24, 2012

      Disability

      Carers Allowance & 2018 Federal Budget

      July 19, 2018

      Disability

      Social Model Of Disability And Why It Is…

      July 8, 2018

      Disability

      iOS Guided Access – How to help focus…

      June 8, 2013

      Disability

      Autism and Travel Insurance

      October 4, 2012

      Grateful

      Grateful for TED

      September 24, 2011

      Grateful

      Grateful for … Spoken Word

      September 15, 2011

      Grateful

      Grateful for … Poetry

      September 8, 2011

      Grateful

      Grateful for … our GP

      August 23, 2011

      Inspiration

      Some Days I Miss … the Theatre

      December 29, 2011

      Inspiration

      Favourite Quotations – Steve Jobs – Change the…

      November 21, 2011

      Inspiration

      Grateful for TED

      September 24, 2011

      Inspiration

      Grateful for … Spoken Word

      September 15, 2011

      Laughter, Song & Dance

      Most Wuthering Heights Day Ever 2018 – An…

      July 15, 2018

      Laughter, Song & Dance

      If Moms Talked to Each Other The Way…

      October 17, 2015

      Laughter, Song & Dance

      Friday Funny: Lullaby

      August 24, 2012

      Laughter, Song & Dance

      Friday Funny – Fotoshop by Adobé

      April 20, 2012

      Mind & Spirit

      I Miss My Dad

      April 29, 2012

      Mind & Spirit

      Grateful for TED

      September 24, 2011

      Mind & Spirit

      Less than perfect – Good Enough Mum

      August 16, 2011

      Mind & Spirit

      Words of Wisdom for New Mums

      January 19, 2009

      Play & Rest

      If Moms Talked to Each Other The Way…

      October 17, 2015

      Play & Rest

      Review: Sydney Good Food and Wine Show

      June 24, 2012

      Play & Rest

      Get Your Motors Running – Autism Motorcyle Ride

      April 20, 2012

      Play & Rest

      Royal Easter Show 2012 – Last minute Show…

      April 6, 2012

      Technology

      iOS Guided Access – How to help focus…

      June 8, 2013

      Technology

      Do you Backup Your Blog?

      September 22, 2012

      Technology

      Apple Junkie: Preview of iOS5

      June 6, 2011

      Travel

      Things I love about London – St Pauls

      March 9, 2012

      Travel

      Things I love about London – British Museum

      February 29, 2012

      Travel

      Things I Love About London – Tower of…

      February 9, 2012

      Travel

      Crazy Dreams – Vespa Ape

      July 24, 2011

      Stories of Life

      Remembering 9/11 20 Years On

      September 11, 2021

      Stories of Life

      Carers Allowance & 2018 Federal Budget

      July 19, 2018

      Stories of Life

      Most Wuthering Heights Day Ever 2018 – An…

      July 15, 2018

      Stories of Life

      Social Model Of Disability And Why It Is…

      July 8, 2018

  • Stories
  • Instagram
  • About me
    • Contact Me
    • Guest Post Submission Guidelines
N My Life
- crafting life -
Tag:

autism diagnosis

Disability

Lessons Learnt – Getting an autism diagnosis

by bronwyn August 1, 2011
written by bronwyn

When writing my previous post on Autism Parents – Sadness and Depression it made me think about the various stages going through the process from first identification of a potential problem through to diagnosis and early intervention. It made me think about what lessons I had learnt along the way and what I wished I had known back then that could have helped speed the process of up a bit, made it easier or less stressful. I thought that it might be a good idea to write down in a series some of the lessons I have learnt. To get us started I thought that it would be good to start with getting a diagnosis.(Please note I am speaking from experience from Sydney … some changes would need to be taken for different locations especially for those outside of capital cities)

Getting a Autism Diagnosis

It is a hard time when you have first heard the words that you need to have your child assessed for a potential developmental delay or autism. However IMHO you need to get started on it ASAP. I know it is hard and you just want to have time to deal with the news you have recieved but from what I have seen and experienced the sooner you get started on the path for assessment the better.

The reason for why you should get started on this ASAP is

  • {most important} research has shown that the earlier that you start early intervention the better
  • for government services they have waiting lists for everything. You have to wait to get diagnosed and then wait for access to services and treatment. The sooner you get on the lists the sooner you get diagnosed and then if appropriate access to treatment services.
  • some funding expires when your child reaches certain ages. The Federal Government’s specific program for funding early intervention unfortunately is one of these. You will often hear this being referred to as FaHCSIA. More information below

Organizing Assessment

Step 1 – Referral

Most assessment centres require a referral from a Pediatrician. This includes the Children’s Hospital and Private Centres. I have found from our experience that if you get a referral from to the Children’s Hospital that private centres will also accept the same referral. It is also a good idea because you need this referral from the Pediatrician to be able to access some funding from Medicare for private assessment if you choose to go down that path.

Step 2 – Organising Assessment – Children’s Hospital at Westmead – Disability Specialist Unit

Even if you look at going down the path of getting a private assessment,  I think that it is worthwhile getting an assessment done through the Children’s Hospital Westmead – Disability Specialist Unit.

Why is it good to get an assessment completed through the children’s hospital even if you choose to go the private assessment path as well

  • the assessment is completed by a pediatrician and psychologist. This is useful when applying for the FaHCSIA Helping Children With Autism Package Early Intervention Funding
  • they use different tests to the private assessment centre (Griffith’s Developmental Scale)
  • they have connections to the Department of Human Services, Ageing, Disability and Home Care that appear to be helpful in fighting some bureaucracy to getting access to the right people to look at what government options are available for therapy and the waiting lists involved.
  • they schedule annual assessments after you have received your original diagnosis. This can be very useful for both measuring progress and to have up-to-date reports when talking to schools.

When we completed our assessment, we had to send through a copy of our referral from our Pediatrician. For speed, my recommendation is to call and find out who your co-ordinator is and then email it in. It will help save you some time. Once it is reviewed a very long questionnaire (20+ pages) was posted back to us to complete. This tells them alot of information about their development. It will take some time to complete but fill it in as soon as you can and make sure you keep a copy. For speed and record keeping send it back in a express post pack and keep the reference number. This way you can track and even have proof of delivery from the Australia Post website (http://www.auspost.com.au/track/).

From our experience I discovered that once you have submitted it you will be put on a waiting list for a date. You will receive the date approximately 6-8 weeks before your date. I was not informed this until I started asking alot of questions. I was also informed that you can not check the progress of your request. You just have to wait for them to call with a date. When it is time they will call and let you know the date and send out some paperwork before hand to help prepare you for what is going to happen. You probably will also get a call from a Case Worker before the date.

To give you an idea about our experience and timelines. I had submitted our paperwork on 25th November and I had confirmation that they had received it on that date. When I called up in January I was told that he was on the waiting list for a date (~6 months) and it would be at best sometime in May. We ended up being lucky that someone cancelled and we saw them in February. The coordinator did a great job but if they just don’t have the resources to allow you to be better informed on what is happening or get things done quicker .. you really can’t fault them but this is your first glimpse at how underfunded this area of health is.

Step 3 – Private Assessment

Private assessment is worth investing IMHO. Especially if your child is older.  To be eligible for FaHCSIA Helping Children With Autism Package Early Intervention Funding package a child must have been seen by an Autism Advisor and deemed eligible to access the program before their sixth birthday. What this means is that they need to be assessed and then have time to get the paperwork in order and see the Autism Advisor before they turn 6. For some it is a race against time.

There are a couple of options available. I have only experience with Lizard Centre but I know also that the Autism Spectrum Australia (ASPECT) as well as other treatment centres offer assessment services. From what I have seen they cost about $1000. However Medicare and private health fund rebates are available.

We used the Lizard Centre at Chatswood and found them to be very professional and we were able to get in for an assessment in only 3 weeks. They used 2 assessment tools – ADOS and ADI-R.

Autism Spectrum Australia
http://www.autismspectrum.org.au/
02 8977 8300

Lizard Centre
1300 326 484

IMHO if you can afford it .. time for early invention is also so important. This is the BIG one that I wish I had known earlier. If you can afford it … do it.

Step 4 – What to do while waiting Assessment

A . Early Days Workshops

http://www.earlydays.net.au/

Early Days provides workshops for mothers and fathers, and other family carers, of children aged six years and under who have been diagnosed as being on the Autism Spectrum or are starting the assessment and diagnosis process. The workshops provide information about Autism Spectrum Disorders and about the early intervention services that are available to help within the local community.

Early Days workshops

  • No joining fees
  • No cost for workshops
  • Practical strategies to help with everyday challenges
  • Trained professionals with experience in ASD
  • Links parents and carers with local support services

Go to Early Days to find out about courses run near your or participate in a online course.

B. Visit All Abilities Playgrounds like Livvi’s Place Playground

I am a huge fan of all abilties playgrounds and especially Livvi’s Place. They are a great place for kids to play and the facilities there just make it alittle easier to relax for you.

I hope that this is useful .. if you have had a different (or even the same experience) I would love to hear about it … also if you are currently going through the process and want to chat … please don’t hesitate to contact or comment below … What do you think?

photos from iStockphoto

August 1, 2011 0 comment
0 FacebookTwitterPinterestEmail

About Me

About Me

Hi, I'm Bronwyn. I like to eat, laugh, take photos, tell stories, dream, help people & balance that with being a mum of 2 autistic kids. All my own opinions

Keep in touch

Facebook Twitter Instagram Pinterest Goodreads

Recent Posts

  • Favourite Scrapbooking Tools – Silhouette Cameo 4

    September 13, 2021
  • What is December Daily?

    September 12, 2021
  • Remembering 9/11 20 Years On

    September 11, 2021
  • Carers Allowance & 2018 Federal Budget

    July 19, 2018

Instagram

Categories

  • Craft Projects (10)
    • December Daily (3)
    • Photography (4)
    • Project Life and Project 365 (3)
    • Wordless Wednesday (5)
  • Retire (3)
  • Stories of Life (175)
    • Community & Kids (59)
    • Disability (51)
    • Grateful (7)
    • Inspiration (11)
    • Laughter, Song & Dance (18)
    • Mind & Spirit (4)
    • Play & Rest (14)
    • Technology (3)
    • Travel (9)
  • Storytelling & Memory Keeping (14)
    • Digital Scrapbooking (9)
    • Hybrid Scrapbooking (2)
    • Mobile Memory Keeping (2)

Recent Posts

  • Favourite Scrapbooking Tools – Silhouette Cameo 4

    September 13, 2021
  • What is December Daily?

    September 12, 2021
  • Remembering 9/11 20 Years On

    September 11, 2021

Categories

  • Storytelling & Memory Keeping
  • Craft Projects
  • Stories of Life
    • Disability
    • Grateful
    • Laughter, Song & Dance
    • Play & Rest
    • Travel

Popular Posts

  • 1

    Digital Scrapbooking Freebies are out there – Persnickety Prints

    July 18, 2018
  • 2

    How to do Project 365 and how do I do it with Instagram?

    January 3, 2012
  • 3

    Project Life Digital – Freebies Are Out There ..

    October 21, 2012

Instagram

  • Facebook
  • Twitter
  • Instagram
  • Pinterest
  • Goodreads

@2021 - Bronwyn Orsatti

N My Life
  • Storytelling & Memory Keeping
    • Digital Scrapbooking Hybrid Scrapbooking Mobile Memory Keeping All
      December Daily

      What is December Daily?

      September 12, 2021

      Digital Scrapbooking

      Digital Scrapbooking Freebies are out there – Persnickety…

      July 18, 2018

      Digital Scrapbooking

      Project Life Digital – Freebies Are Out There…

      October 21, 2012

      Digital Scrapbooking

      Digital Project Life – How to get started?

      October 14, 2012

      Hybrid Scrapbooking

      Favourite Scrapbooking Tools – Silhouette Cameo 4

      September 13, 2021

      Hybrid Scrapbooking

      What is December Daily?

      September 12, 2021

      Mobile Memory Keeping

      Project Life App

      August 2, 2015

      Mobile Memory Keeping

      How to do Project 365 and how do…

      January 3, 2012

      Storytelling & Memory Keeping

      Favourite Scrapbooking Tools – Silhouette Cameo 4

      September 13, 2021

      Storytelling & Memory Keeping

      What is December Daily?

      September 12, 2021

      Storytelling & Memory Keeping

      Digital Scrapbooking Freebies are out there – Persnickety…

      July 18, 2018

      Storytelling & Memory Keeping

      2017 Project 365 – Preparations and Lessons Learnt

      December 31, 2016

  • Projects
    • December Daily Photography Project Life and Project 365 Wordless Wednesday All
      December Daily

      Favourite Scrapbooking Tools – Silhouette Cameo 4

      September 13, 2021

      December Daily

      What is December Daily?

      September 12, 2021

      December Daily

      Merry Christmas Everyone!!

      December 20, 2011

      Photography

      Digital Project Life – How to get started?

      October 14, 2012

      Photography

      Wordless Wednesday – Thomas & The Train Shed

      December 21, 2011

      Photography

      Wordless Wednesday ….

      November 16, 2011

      Photography

      Wordless Wednesday

      August 24, 2011

      Project Life and Project 365

      Favourite Scrapbooking Tools – Silhouette Cameo 4

      September 13, 2021

      Project Life and Project 365

      Digital Project Life – How to get started?

      October 14, 2012

      Project Life and Project 365

      How to do Project 365 and how do…

      January 3, 2012

      Wordless Wednesday

      Wordless Wednesday – Thomas & The Train Shed

      December 21, 2011

      Wordless Wednesday

      Wordless Wednesday ….

      November 16, 2011

      Wordless Wednesday

      Wordless ….

      October 9, 2011

      Wordless Wednesday

      Wordless Wednesday – Miss Outside

      September 21, 2011

      Craft Projects

      Favourite Scrapbooking Tools – Silhouette Cameo 4

      September 13, 2021

      Craft Projects

      What is December Daily?

      September 12, 2021

      Craft Projects

      Digital Project Life – How to get started?

      October 14, 2012

      Craft Projects

      How to do Project 365 and how do…

      January 3, 2012

  • Life
    • Community & Kids Disability Grateful Inspiration Laughter, Song & Dance Mind & Spirit Play & Rest Technology Travel All
      Community & Kids

      Carers Allowance & 2018 Federal Budget

      July 19, 2018

      Community & Kids

      Pool Safety … Is Your Pool Ready For…

      October 19, 2012

      Community & Kids

      Autism and Travel Insurance

      October 4, 2012

      Community & Kids

      School Holiday Ideas – Thomas & the Train…

      September 24, 2012

      Disability

      Carers Allowance & 2018 Federal Budget

      July 19, 2018

      Disability

      Social Model Of Disability And Why It Is…

      July 8, 2018

      Disability

      iOS Guided Access – How to help focus…

      June 8, 2013

      Disability

      Autism and Travel Insurance

      October 4, 2012

      Grateful

      Grateful for TED

      September 24, 2011

      Grateful

      Grateful for … Spoken Word

      September 15, 2011

      Grateful

      Grateful for … Poetry

      September 8, 2011

      Grateful

      Grateful for … our GP

      August 23, 2011

      Inspiration

      Some Days I Miss … the Theatre

      December 29, 2011

      Inspiration

      Favourite Quotations – Steve Jobs – Change the…

      November 21, 2011

      Inspiration

      Grateful for TED

      September 24, 2011

      Inspiration

      Grateful for … Spoken Word

      September 15, 2011

      Laughter, Song & Dance

      Most Wuthering Heights Day Ever 2018 – An…

      July 15, 2018

      Laughter, Song & Dance

      If Moms Talked to Each Other The Way…

      October 17, 2015

      Laughter, Song & Dance

      Friday Funny: Lullaby

      August 24, 2012

      Laughter, Song & Dance

      Friday Funny – Fotoshop by Adobé

      April 20, 2012

      Mind & Spirit

      I Miss My Dad

      April 29, 2012

      Mind & Spirit

      Grateful for TED

      September 24, 2011

      Mind & Spirit

      Less than perfect – Good Enough Mum

      August 16, 2011

      Mind & Spirit

      Words of Wisdom for New Mums

      January 19, 2009

      Play & Rest

      If Moms Talked to Each Other The Way…

      October 17, 2015

      Play & Rest

      Review: Sydney Good Food and Wine Show

      June 24, 2012

      Play & Rest

      Get Your Motors Running – Autism Motorcyle Ride

      April 20, 2012

      Play & Rest

      Royal Easter Show 2012 – Last minute Show…

      April 6, 2012

      Technology

      iOS Guided Access – How to help focus…

      June 8, 2013

      Technology

      Do you Backup Your Blog?

      September 22, 2012

      Technology

      Apple Junkie: Preview of iOS5

      June 6, 2011

      Travel

      Things I love about London – St Pauls

      March 9, 2012

      Travel

      Things I love about London – British Museum

      February 29, 2012

      Travel

      Things I Love About London – Tower of…

      February 9, 2012

      Travel

      Crazy Dreams – Vespa Ape

      July 24, 2011

      Stories of Life

      Remembering 9/11 20 Years On

      September 11, 2021

      Stories of Life

      Carers Allowance & 2018 Federal Budget

      July 19, 2018

      Stories of Life

      Most Wuthering Heights Day Ever 2018 – An…

      July 15, 2018

      Stories of Life

      Social Model Of Disability And Why It Is…

      July 8, 2018

  • Stories
  • Instagram
  • About me
    • Contact Me
    • Guest Post Submission Guidelines