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
