JLeigh29 - It was our MCHN who noticed issues with DS1 at the 18mth check, he had really poor gross and fine motor skills so referred him off to an Early Childhood Intervention Service (ECIS - State Government Program) to be wait listed. Our Intake Worker at ECIS called me and also sent me a plan of what we should be doing while we awaited a place to start the process in getting the boys assessed.

Initially he was referred due to developmental delays - although DS2 wasn't referred as he had predominantly speech delay but awesome gross and fine motor skills. When I spoke to the Intake Worker I explained about DS2 and lack of speech and she told me as I was getting one of the boys assessed I may as well get the same things started for DS2. From this plan that was sent I then approached our GP to get referred under the Chronic Management Plan for the boys to be assessed by a Speech Therapist (who they have been seeing for the past 7mths) and it was the Speechy who told me that DS2 displays more than just Speech Delay so wouldn't fit into the public system for ongoing treatment as if they show other signs then they need to go through other channels, so the Speechy sent the referral for DS2 to also be waitlisted to ECIS.

It was also the Speechy who told me I needed to get our GP to do a referral under the Mental Health Plan to have the boys assessed by a Psychologist. They are already under the care of a Paed and had an appointment in May so we waited until we had seen all the other parties before discussing the details with the Paed.


At the Paed appt he told us that he doesn't just diagnose kids with ASD but needed to review what the other 'professional' provided from their reports of the boys and he also wanted to have a long appt with the boys to assess them based on his observations as well. So we had an appt for the following week to see what he deemed, he assessed the boys and told us that based on his finding and those of the other professionals that the boys showed signs of ASD - but with differing deficiencies - and that as they grow they will always move within the 'spectrum' but for us early intervention was the best course of attack, which we had already started with the Speechy.

All up it took 7 months of reviews, appt's. assessments etc for a diagnosis to be made and then we could apply for the Federal Government funding.

Yes we get $12k per boy but this is not money in our bank account for us to just go an spend, it is managed by a case worker (in our state Autism Victoria) and can only be used to pay for services and resources to help with the boys treatment and this will be ongoing until they turn 7. Once we get placements within the State Government program we will have free services until they start school but until that happens we have to cover the cost of treatment and also once they start school they will still need treatments and the Federal Government funding cuts out at the age of 7.

I have now engaged a service and case manager to be our main person who assesses what they boys need in regards to ongoing treatment and she will be my main contact point until they turn 7, this person is also an OT so she will be helping me with learning and managing the daily challenges I face and how I can help the boys. So a fantastic resource but it costs us over $250 every fortnight for this service (so without the Federal Funding we could not afford to provide this service to my boys).

No parents chooses to have a child with 'issues' but I am very proactive in wanting what is best for my kids and to be able to provide them with the best assistance so that hopefully, once they do go to school then they will have a lot more skills to be able to go into the mainstream system and to also grow up to be active members in the community. Yes they have been diagnosed as having ASD and it is classified as a disability but I would rather deal with that and then help them than sit back and just take a wait and see approach and it all to turn pear shaped later on.

Sorry for highjacking your thread forshelby, but I think that if parents have a gut feel that something isn't right you should have it assessed. I would rather be classified as a paranoid parent than do nothing and regret not having acted sooner if there is something.