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How To Seek An ASD Assessment/Diagnosis


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#1 baddmammajamma

Posted 23 August 2013 - 04:03 PM

Hi all:Recently, I put together a parent-to-parent summary for how to go about seeking an ASD assessment/diagnosis for a child in NSW. I've focused on "official diagnoses" that meet the standards for federal funding and other programs. Note: A formal diagnosis of ASD does NOT mean that your child is necessarily eligible for school funding -- that is an entirely different ballgame.

That NSW-oriented piece is at the end of this note, and it is based on “inside advice” from having gone through the formal assessment process twice with my daughter and advice that other parents on EB have offered over the years. I am not an official representative of any organization and mine is not professional advice. It is simply mum-to-mum counsel.

To be honest, I have found some of the “official” web sites to be rather cumbersome and confusing, so it is my hope that the description below is a little more user-friendly for parents who are probably stressed out about the prospect of having their child assessed.I hope that some fellow parents will provide their experiences/advice with the assessment processes within their respective states or territories.

In the meantime, here is a quick summary of how to get started on an ASD assessment in each of the Australian states and territories (all data taken from respective state/territory autism associations and the FaHCSIA site).

A few things are important to know:

1) The ASD assessment/diagnostic process can be lengthy, especially if you are accessing public services. That's why I & so many other members encourage our fellow parents to get the process rolling as soon as possible.

2) ASD funding is heavily skewed toward young children (children diagnosed before the age of 6). An ASD diagnosis and interventions at any age can be very, very valuable; but unfortunately, as things stand right now, with the exception of areas that are piloting the NDIS, the most significant funding packages are directed only at young children -- another reason to act upon your concerns as soon as they start to surface.

3) The ASD assessment/diagnostic process differs across Australia. Some states allow a single specialist to make the diagnosis; others require a panel approach. Typically, your GP will be your first step to getting the referrals needed to have your child assessed.

4) Not all health care professionals have the experience or expertise to accurately rule in or rule out ASD. Some might even discount your concerns and make you feel like you are overreacting. The best way to safe guard against that is to get recommendations of professionals from other ASD parents and professionals you trust.Here are the key links for each state and territory to help you get started. Please PM me if you have additional relevant info or if you see any errors.Thanks & best wishes!

ACT

Official territory autism association:http://www.autismaspergeract.com.au/

This summary from the site above indicates two options for obtaining an official ASD diagnosis in the ACT:

http://www.autismasp...may-have-autism
  • 1. GP ---> Paediatrician --- > Therapy ACT (to conduct the fuller assessment) http://www.community...autism_services
  • GP ---> Paediatrician refers to --> Private psychologist, who conducts deeper assessment and refers back to ---> Paediatrician for official "sign off"


NSW

Official state autism association, ASPECT:

http://www.autismspectrum.org.au

Official diagnosis can be made by:
  • Paediatrician/developmental paediatrician OR
  • Child psychiatrist OR
  • Multi-disciplinary team (must include psychologist + speech therapist, but may also include an occupational therapist with ASD experience) OR
  • Aspect assessment team
NT

Official territory autism association: Autism NT

http://autismnt.org.au/

However, the Autism Advisor program (the one that grants you access to the $12,000 “Helping Children With Autism” package) is administered through Autism SA:

http://www.autismsa.org.au/

The Autism NT site does not specify which professionals must be involved in an official diagnosis – best to confer with someone at Autism SA.

QLD

State autism association – Autism Queensland:

http://www.autismqld.com.au/

Official diagnosis can be made by:
  • Paediatrician/developmental paediatrician
  • Child psychiatrist

SA

State autism association – Autism SA

http://www.autismsa.org.au/

Official diagnosis can be made by:
  • Autism SA assessment team
  • Autism SA-approved community health care (hospital based) multi-disciplinary teams
  • Autism SA-approved private multidisciplinary team (must include two professionals from approved list of speech therapists, paediatricians, psychologists & psychiatrists)

http://www.autismsa.org.au/uploads/Diagnostic/Accessing%20Diagnostic%20Assessment%20from%20Autism%20SA%20130516.pdf

TAS

State autism association – Autism Tasmania

http://www.autismtas.org.au/

The Autism Tasmania site does not specify which professionals must be involved in an official diagnosis – I do have it on good authority from a leading local autism advocate that Tasmania requires either a (a) paed/developmental paed/child psychiatrist or (b) joint assessment/diagnosis from a psychologist + speech therapist. Best to confer with the good folks at Autism Tasmania.



VIC

State autism association (and by far the best web site IMHO!) – AMAZE, formerly known as Autism Victoria.

AMAZE spells out the steps for seeking an assessment/diagnosis very clearly on this link:


http://www.amaze.org.au/discover/about-autism-spectrum-disorders/assessment-diagnosis/

Official diagnosis can be made by:
  • For children up to 17 by a multi-disciplinary panel  that includes (a) paediatrician/developmental paediatrician or child/adolescent psychiatrist plus (b) psychologist plus (c ) speech therapist

WA:

State autism association – Autism Association of Western Australianhttp://www.autism.org.au/

Official diagnosis can be made by:
  • For children up to 12 years old by a multi-disciplinary panel that includes (a) paediatrician/developmental paediatrician plus (b) clinical psychologist  plus (c ) speech therapist
  • For children 12-17 by a multi-disciplinary panel that includes (a) clinical psychologist plus (b) paediatrician or child/adolescent psychiatrist plus (c ) speech therapist in some cases (not all)

http://www.autism.or...stralia-web.pdf


NSW-SPECIFIC ADVICE

Hi all:I shared this on a local Sydney mums' forum & thought it might have value here for our NSW readers. I thought that if I print it now, even if it gets buried on this board, I can easily unearth it as needed (profile search).

This note is targeted at parents who have concerns about ASD and are now figuring out what to do. Here are my “non expert” expert summary of next steps if you are in NSW (with some Sydney specific advice).

This is not medical advice -- this is just parent-to-parent advice.
This summary has a heavy private-services skew to it, so please, anyone with first hand knowledge of the public system, please chime in.

In NSW, there are four key ways in which a child can receive an assessment and formal diagnosis of ASD. “Formal” means that any of these processes meets that standards needed to qualify for key federal funding (like the $12,000 “Helping Children With Autism” early intervention plan), certain smaller benefits, like the Carer’s Allowance, and recognition by schools (but again, does not guarantee school funding).


These include a definitive (not provisional) diagnosis made by

:1) A paediatrician or developmental paediatrician (medical doctor) or


2 A child psychiatrist (medical doctor)  or

3)  A multi-disciplinary team (MUST include a psychologist & speech therapist, who write & sign the report/diagnosis together – can also include an OT with relevant ASD experience, though OT not required) or

4) ASPECT, which is NSW’s state association for autism (assessments led by clinical psychologist)

Among those four choices, it is very important to see professionals who truly understand autism and the many different ways it can present in individual children.

For instance, even though a generalist paediatrician is capable of making a diagnosis under the rules above, he/she might not have the rich experience base and expertise with ASD to accurately rule in/rule out ASD. Same goes for other professionals, like psychologists.Above all else, if you are seeking an ASD assessment for your child, consider seeing someone who specializes in ASD/related disorders as a significant part of their practice and uses gold standard assessment tools.


Gold standard assessment tools typically include (for younger children) a very extensive structured parent interview covering the child’s developmental history and presentation, as well as a structured play-based observation session, in which the assessor will set up various scenarios for your child to see how they will respond (it is actually quite fun). IQ testing might be a part of the assessment in some cases, and it should also take into account input from other relevant stakeholders (such as teachers, daycare/preschool, other service providers with meaningful exposure to your child).

If a practitioner is willing to rule in or rule out something as serious as ASD with only a cursory appointment, SEEK ANOTHER PROFESSIONAL!

On the paediatrician side, I would STRONGLY recommend seeing a DEVELOPMENTAL PAED instead of a generalist one. Fortunately, there are several very good developmental paeds in Sydney who focus on ASD (I & the other ASD mums here are happy to share recommendations), as well as other locations in NSW.  In order to get Medicare rebates, you will need a GP referral.

Warning: waiting lists for developmental paeds are usually loooooong. Doesn’t matter whether they are private or public.
If you are considering a private developmental paed, you can often book the appointment before you go to your GP. You simply need that referral letter at the time of the actual dev paed appointment.

Some GPs are totally “in the know” about dev paeds; others are not. You might want to call more than one highly recommended dev paed to see who can offer the least amount of wait time. (then tell your GP “I want to see Dr. So and So”). Call back regularly to the receptionist to see if there are any cancelled appointments. That is a great way to jump the queue a bit! Assessments typically span over more than one appointment (unless so blazingly obvious).

Private fees before rebate, you are probably looking at $600-900 to cover the assessment and report.Another  option is to go to for a multi-disciplinary approach (clinical psych + speech therapist). For this option, you might want to consider going to a practice that includes both types of professionals, as they will need to jointly sign off on any diagnosis.

There are some very good practices in the Sydney area that have an ASD focus. Consider using them, as opposed to the more garden variety practices. You want someone at the helm who routinely engages in ASD assessments and support. Again, with a GP referral, you will be able to get some Medicare rebates – but you can book the appointment(s) before you actually have that letter in your hand. Generally speaking, psychologists tend to have shorter waiting lists than developmental paeds. Assessment fees can vary, but you should expect something in the $500-1000 range, BEFORE rebate.

Another option is to go through ASPECT, which is the state organization for autism in NSW. They are located in French’s Forest. The current cost of an assessment is $1200, BEFORE Medicate rebate. In order to claim that rebate, you must get a referral from a paediatrician/dev paediatrician or child psychiatrist. NOTE: A GP referral will not be sufficient to claim the Medicare rebate, unlike the options above.
http://www.autismspe...=664&Itemid=664

If your child is under the age of 6 and receives an ASD diagnosis through any of the channels above, he/she will be eligible for the “Helping Children With Autism” early intervention package, the cornerstone of which is $12,000 to assist with early intervention (unless you are in one of the NDIS pilot areas, as then services will come under that).

Children diagnosed after their 6th birthdays are not eligible at this time, unfortunately. Additionally, children with ASD diagnoses (regardless of age) are also eligible for other smaller benefits and should also be eligible for certain accommodations at school, if needed. I will defer to another ASD mum to cover the ins and outs of school funding.


http://www.autismawa..._autism_package

If you take away any information from this rambling note, let it be:

* It’s important to seek professional guidance if you are concerned about possible ASD*

It is even more important to receive the RIGHT kind of guidance. Be sure to see professionals who come highly recommended by health care professionals you trust and/or ASD parents and who have rich experiences bases in working with kids with ASD.  Generalist practitioners may/may not have the experience with ASD that is needed to make properly rule in or rule out ASD.

* The process for getting an ASD assessment/diagnosis can be a lengthy one, especially if you are using public services. If you have concerns, get the ball rolling as soon as possible.

* Some front line medical professionals (GPs, MCHNs) are wonderful about flagging potential issues and referring patients to relevant specialists. Others are not. If you feel that your concerns are not being considered, do not hesitate to seek another GP.

* As always, please feel free to use me or other ASD parents on EB as  resources if you grappling with a new or suspected diagnosis.


Thanks!

Edited by baddmammajamma, 19 January 2014 - 11:05 AM.


#2 ~chiquita~

Posted 24 August 2013 - 09:21 AM

Thank you BMJ :)

This is exactly the information that members are looking for when they first come to this section suspecting ASD in their child.

I don't want this post to get buried in this board, I'd like to see it pinned.

#3 baddmammajamma

Posted 24 August 2013 - 10:54 AM

Thanks, Chiquita. I have amended the title/opening post so that perhaps we can build upon this and have a state-by-state explanation.

As for pinning, I wonder if the mods could re-visit some of the notes that are currently pinned at the top. We are very "pin heavy" on this board, and I'm not sure all of the notes, including the one I started on funding, are actually getting much use. It's not clear.

#4 Therese

Posted 24 August 2013 - 10:57 AM

Thanks BMJ :)

Pinned topics are tricky. Sometimes things get more attention when they are not pinned. I will go and have a look at what topics are pinned now and see what can go.

#5 Therese

Posted 24 August 2013 - 11:06 AM

OK. I have looked at the pinned topics and I am really not sure what can be unpinned.  I don't want any of the information to get lost.

One suggestion would be for me to start a new post that was called something like information and links. I could then post a link to each topic that is presently pinned. Then I could unpin the topics, but pin the new thread with all the links in it.

I would leave a couple of threads up there (the please read and sign once and the mod information thread)

What do you think ?

#6 baddmammajamma

Posted 24 August 2013 - 11:39 AM

I think that might work, Therese (I hope other people weigh in).

On the (U.S.) BabyCenter's SNs board, they have a pinned note that contains links to previously shared ASD threads (the ones that cover key info like funding, Asperger's tips, communications) and ones that have attracted a lot of traffic
on the general boards.

Maybe we could do something similar and then organize them by subject? We could start a separate thread here & ask people to share the links that they've found most helpful.

I'd be happy to help you round up some of the threads (I certainly didn't start all of them!)

#7 AMPSyd

Posted 24 August 2013 - 11:54 AM

Being a NSW family all I can say is a good Dev Paed is worth his/her weight in gold. And I'll repeat BMJ's comment that a Dev paed is the way to go rather than a general paed - you want one who is in tune with behavior and development.

Our diagnosis was made well after DS turned 6 (he is actually 12) but a good GP should be able to work therapies (psych, OT, speechie) so that there is a Medicare rebate. All is NOT lost if a diagnosis is made after 6.



#8 baddmammajamma

Posted 24 August 2013 - 07:43 PM

I've updated the thread to include some basic info on each state & territory. Please, if you have additional info or see any errors, please let me know!

Thanks!

#9 baddmammajamma

Posted 22 September 2013 - 05:39 PM

bumping re recent threads -- hope this stuff is helpful to people just starting out!

#10 baddmammajamma

Posted 15 December 2013 - 11:09 AM

Bumping in response to a few queries. This thread is also included in the pinned note at the top of this page ("ASD Resources")

#11 Kat255

Posted 15 December 2013 - 12:12 PM

Awesome summary. Thankyou.

 baddmammajamma, on 23 August 2013 - 04:03 PM, said:

Another  option is to go to for a multi-disciplinary approach (clinical psych + speech therapist). For this option, you might want to consider going to a practice that includes both types of professionals, as they will need to jointly sign off on any diagnosis. There are some very good practices in the Sydney area that have an ASD focus. Consider using them, as opposed to the more garden variety practices. You want someone at the helm who routinely engages in ASD assessments and support. Again, with a GP referral, you will be able to get some Medicare rebates – but you can book the appointment(s) before you actually have that letter in your hand. Generally speaking, psychologists tend to have shorter waiting lists than developmental paeds. Assessment fees can vary, but you should expect something in the $500-1000 range, BEFORE rebate.
This was not my experience. I had a referral from a Paed (not a Dev Paed) to a Speech Path and to a Psychologist. Neither were able to give me a rebate based on the referral alone.

My GP put together a Mental Health Plan for DS (3.11) which covered a small number of Psychologist appointments (5 from memory) for getting Rebates. We went private, so there was still a decent gap.

I'd be interested in what experiences others who went the multi-disc approach had.

But awesome post BMJ. I would have been lost without all the support and advice on these forums!!

#12 Acidulous Osprey

Posted 15 December 2013 - 12:18 PM

My understanding is that technically you need to be diaganosed before you can use that funding *but* it seems to be pretty common that this is ignored.

#13 75etd

Posted 15 December 2013 - 01:23 PM

We've recently been through the assessment process privately in NSW using the multi disciplinary approach.

Our paed (not Dev Paed) advised us to go to the GP for a mental health plan (rebates for 5 appontments with psych), and we already use another care plan for 5 rebated speech therapy sessions per year (GP referred).

This does leave us with significant out of pocket, however private health helps out with speech therapy for a couple of months a year, and I'm not yet sure what other services we're likely to use on an ongoing basis.

#14 baddmammajamma

Posted 15 December 2013 - 02:15 PM

75etd: It does suck, doesn't it? I started another thread on funding options, but they really don't cover the full extent of what most kids with ASD need. We have private insurance as well, and we still play through the nose (but are very aware that we have it better than many families).

#15 Kat255

Posted 15 December 2013 - 02:28 PM

Thanks Laborious Nicety and 75etd. You have filled in the pieces of the puzzle. I think you are talking about the EPC (Enhanced Primary Care) or CDM (Chronic Disease Management) as it is now known.

http://www.health.go...seasemanagement

Quote

There is no list of eligible conditions; however, the CDM items are designed for patients who require a structured approach, including those requiring ongoing care from a multidisciplinary team.

Whether a patient is eligible for CDM services is a clinical judgement for the GP, taking into account the patient’s medical condition and care needs, as well as the general guidance set out in the MBS.

Patients who have a chronic medical condition and complex care needs and are being managed by their GP under a GP Management Plan (item 721) and Team Care Arrangements (item 723) are eligible for Medicare rebates for certain allied health services on referral from their GP.
I did speak about this to my GP (I was after rebatable Speech Pathology sessions). He said without a formal diagnosis of Autism, that DS was not eligible. Sounds like it was at his discretion to make that call.

#16 baddmammajamma

Posted 19 January 2014 - 11:06 AM

Updated and bumped




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