The cost of ASD

We've got into some pretty nasty debt over the last 12 months getting our son diagnosed with Autism. I had originally thought by this time this year we'd be relatively ok and able to stop spending and get some of that debt down. What I didn't take into account was the fact that the cost seems to be almost as ongoing as the illness itself. By September last year we had already reached our Medicare Safety Net and we hadn't even reached the point of diagnosis.
The diagnosis came and it was time for us to take the next step; Early Intervention. As it turns out, all the assessments we had done weren't enough; we needed another. Even though we were now armed with our special Medicare number that was supposed to make things cheaper, and over the limit for Medicare (this is supposed to entitle you to a higher rebate) we still only received about 50% back. We're done now right? Wrong!

Right near Christmas Alex had a 'seizure type event'. Now I use those words and the quotation marks because that's the best description the doctors could give at the time.
So far we had spent around $3-4k, so surely we're done now right? Nope, not even close! There's also 3 different tests that need to be done for primary school entry as well!

It's all too easy for those who are outside of our situations, and look at our $12,000 in FAHCSIA funding and the $110 a fortnight Carer's Allowance and assume that parents are trying to con their pediatricians into giving their child an ASD diagnosis for the 'free ride'. But I can tell you from this side of the fence, it's not even close to that!

When we crossed our Medicare Safety Net last year, most people's responses to that was "oh good! You'll get more back now" but not only did that not happen, but somethings were not covered at all. Report writing for example, does not have a medicare number, so even for crucial reports which you need for entry into programs, you don't get a cent back. Let me also remind you that you can't touch the FAHCSIA funding and you wont squeeze a cent out of Centrelink until you actually have your diagnosis, which believe me is no picnic. Also, to get to the medicare Safety Net in the first place, your medical expenses must exceed $1,500 out of pocket within that calendar year!

Even in our post funding grant days, we are very limited in choice and must select from predetermined providers, you can't use any more than $6,000 of the funding in a financial year, Carers Payment is means tested for low income families only and so it goes. Now I know to the average Joe out there $6,000 for a financial year sounds like a lot but when it's $130 an OT session, $130 a Speech Therapy session, and $170 a psychologist or ABA session, $6,000 doesn't last long!

On top of that is personal sacrifice. I have pretty much had the choice of stay at home and help my son or go back to work and to hell with trying to help him to improve. This isn't even a choice at all, even though Centrelink doesn't compensate me a cent for my potential lost income, Alex is at the most vital age for therapy to be at it's highest effectiveness. We are even seriously looking at selling our biggest asset, our house, and returning to renting so that we can live closer to Alex's school and cut down his commute time and our petrol bill.

So what is the real cost of ASD? I'm not sure there's a calculator with enough zeros on it to answer that question!