Questing for diagnosis

Why did the chicken cross the road? To get to the other side, of course! But how did it get there? Did it walk? Did it fly? Some means of teleportation?

Getting through diagnosis is like trying to get through a relentless marathon that never ends. Just when you think you can see the finish line, it was actually just a mirage in the road. The diagnosis process is almost as complex as the disorder itself, and then, believe it or not there's also post-diagnosis assessments, which for a lot of ASD kids usually ends in additional diagnoses being added. Not necessarily superseding the previous diagnosis, but just adding to it, in a similar way to many ingredients making a great cake I suppose.

Victorian parents with concerns their child may have Autism must first start with their GP. We didn't go to our GP with concerns about Autism; we went because we felt, and we had been told by Alex's kinder teachers, that Alex's speech really wasn't where it should be for his age. I had been concerned about Alex's speech for over 12 months now and had his hearing assessed around his second birthday. The results had come back clear of any issues, so we had left it at that and assumed, with time, his speech would come on. We were somewhat reluctant to ask the GP for a paediatrician referral; it's hard to explain why, but all in all we felt that there wasn't really anything 'wrong' with our son. We decided to adopt the attitude of "it doesn't hurt to check".

I don't think I'll ever forget the day we saw our paediatrician for the first time. He barely knew us and he barely knew our son, but somehow he knew more in 45 minutes than we'd learnt in 3 years. Having professionals diagnose so quickly what we couldn't in 3 years can send a lot of doubts through any parent’s mind.

The paediatrician will then recommend an Autism assessment be carried out. There are various ways to go about this. Parents need to get their child to go through a Speech Assessment and a Psychological assessment. Yes, I had to get my 3 year old son a psychological assessment. Even at 30 years old, I've never seen a psychologist for myself.

Some places offer an 'all under one roof' approach; they have qualified speech therapists and psychologists in the same building. There are public places and there are private places. It all seems to come down to how much money you have versus how much time you're willing to wait. My paediatrician told me the average expected waiting time for public speech and psych assessments were around 12 to 18 months in the public system. When I started my first set of ring arounds I quickly learnt he wasn't far wrong.

The closest public appointment I could find was to start the process in September. Given we’d started the journey towards diagnosis in May and we had already spent an agonising 3 weeks waiting for our paediatrician appointment, my husband and I decided we'd spend the money to go private. I realise that in this situation we are "one of the lucky ones" as we actually had private as an option. We didn't have the money set aside, so it was more akin to an agreement to go into debt. How much debt, we hadn't quite prepared for.

We had a lucky break when booking the speech assessment; the therapist just happened to have a cancellation approximately a fortnight away. This was very quick, even for private! The speech assessment consists of two appointments, ideally close together, roughly 45 minutes apiece. Our story differs: our speech therapist was so sure our son had Autism after the first session she offered to skip the second session and go straight to writing the report. In her opinion a second session was a waste of both our time and our money. She offered to go ahead with the second session if I insisted but with the abysmal Medicare rebate, I knew it was smarter to save our money. This session alone was $200 with a rebate of less than half and we’d already forked out $220 for the paediatrician with a very similar rebate.

Next we needed a psychologist assessment. I managed to get an appointment for approximately a month after my phone call. Again, not too bad when compared to other horror stories I've heard, but it's still a long anxious wait for any parent.

Alex's psychologist assessment, the Psycho-Educational Profile, otherwise known as the PEP3 would be spread over 4 sessions; 3 actual assessment sessions with the psychologist and one where the report would be presented to us and we could ask any questions. The three assessment sessions were booked three Tuesdays in a row. Apparently for the results to be valid, the assessment sessions must be carried out as close together as possible so there's little risk of the child developing new skills between sessions and therefore producing inconsistent data. The sessions were varied; none of the tests were particularly daunting. But I can tell you for sure, the report definitely was. Techno-babble terms I'd never come across littered throughout it, numbered scores that didn't mean a thing to me and soul-crushing graphs fairly consistently pointing out that my son’s skills fell below par fairly much across the board.

She explained everything patiently until I had at least a semblance of a grasp of the information. Then I finally asked the psychologist "So do I get the diagnosis now?" No, I had to take my multitude of reports back to the paediatrician to assess the outcome and give an official diagnosis. After throwing $700 at this psychologist evaluation, $200 of which we got a 0% Medicare rebate on as there is no Medicare rebate for reports, we felt our finances had been slaughtered.

Another month spent twiddling my thumbs until our appointment with the paediatrician came up and everything was confirmed. Diagnosis achieved! Alex has Autistic Disorder (or as I often refer to as - Vanilla Autism i.e. Not Asperger’s, PDD-NOS or any of the other ASD's). So that's it right? End of story? Well yes and no. Next we had to find him a place in some form of early intervention program, but given we had been on the waiting list through Early Childhood Intervention Services for Yooralla and Windermere since April, I wasn’t holding my breath. As any other parent who has come this far would know, the initial diagnosis is only a small win for what is a lifetime of battles.