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.

The rules of Autism

There are rules to society and rules to life: Don't hit, don't break things, don't steal and so on. But as my child grows older, I realise he has created his own rule set of 'musts' because of his Autism.

I'm always thinking about the future and what it might hold for me and my boys. In particular, I worry about the future for Alex and whether there will there be a point at which he can happily and easily function as a part of society. I look at Dr. Sheldon Cooper (Big Bang Theory) and I wonder if this will be Alex in 25 years time, with a strict set of internal rules by which he lives his life that also help him be a productive member of society.

I recently watched an episode of Big Bang Theory where Sheldon needed a hair cut. He went to his regular barber shop but his barber was in hospital and Sheldon couldn't bring himself to go to a different barber. Last Sunday we took Alex to his regular barber shop for a hair cut, but upon arriving we were informed that the barber who usually cuts Alex's hair was not working that day. Alex made it very clear that under no circumstances was he going to even sit in the chair, let alone let the other barber touch his hair. "She doesn't cut my hair. Andrew cuts my hair". Yes, we really are on a first name basis with his barber. I wasn't even going to send Alex for a hair cut this weekend but panic ensued when my mother informed me that some people who also frequent this barber for the same reasons I do had told her that the barber was shutting up shop and moving elsewhere. It took us 3.5 years to find a barber Alex can trust and as you can see from the example above, if I had lost this barber, I doubt I would ever get Alex's hair cut ever again.

There often isn't logic or reason behind any of these internal rules either. Where Sheldon might think "because it's Tuesday" is a reasonable reason to not do a particular thing, Alex might respond "because I don't". If you attempt to question him further, for example asking "but why?" there is no witty retort or long drawn out reasoning (although I wouldn't expect that from a 5 year old). It's a deadpan repetitious "because I don't".

I even raised my concerns of these concrete rules to my husband recently, fearing that they may actually be working as an added barrier in our attempts to toilet train Alex. I postulated that he may poo only in his nappy because that's just what he does and has always done; that we will most likely be facing an uphill battle to instill in Alex's brain that pooing in the toilet is indeed something he needs to do. Not just that, but to also recognise and verbalise his need so we can assist him with achieving a result in the toilet rather than his pull up.

But even though Alex makes the rules he lives by (to some extent; I am still the parent) I wonder if the rules rule him. He is the only 5 year old I know who will not go to bed unless he brushes his teeth first. He cried for 15 minutes because the mat we use for changing his nappy on got poo on it and needed a wash, and we were trying to use a towel instead. Will these rules help him function as a member of society when he is an adult, or will they cripple and alienate him?

Judgey Wudgey was a bear

We have been rolling along in our new way of life for a couple of months now with Alex in Prep and catching the bus by himself, and a new baby in our lives. I hadn't stopped to worry much (more than usual) about how Alex's Autism impacts and affects each and every day of his life whether we think about it or not.

I had the luxury of walking my son home from the bus drop off point at the nearby shops one afternoon, and on our way home we passed some children playing in our street. Some of them were younger than Alex, some of them were older. The older children were boys dressed in school uniforms the same colours as Alex's and they seemed curious as we wandered by. "What school do you you go to?" they questioned Alex. An innocent enough question, one I usually never think twice about when talking to other adults, but I had to stop and think. These are children, and children can be cruel, especially when it comes to being notably 'different'. "A school very far away from here, he has to catch the bus" I fumbled together as a reply. "See I told you he didn't go to our school!" the second boy said to the first. "Our school is called Hampton Park Primary" the first boy proudly announced. I smiled and said "That's nice" and shuffled Alex towards home as quickly as I could before they could ask any more questions.

A few months ago we were getting ready for yet another shopping center adventure with our brand new 'Autism Victoria' wristbands on show. My husband asked "What if somebody sees them", referring to the wrist bands "What if someone asks questions? What if they pre-judge Alex and his abilities?". Now I believe half the point of wearing these wristbands is so that people ask questions; that's part of how awareness forms, so questions are a great thing. My gut reaction response was of course "So what if they do?" Why do we have to be so afraid of Alex being judged? We refuse to be ashamed of either our son or his condition. Why should we be ashamed? But snap judgments seem to be part of our human nature, and that's quite often not a good thing.

It seems Autism is still in the dark ages in most people's minds; something we should be trying to hide. I'm also noticing an online trend of people who have an established profiles in various online forums, who then create a second profile with a made up name once they start to suspect their child has Autism. Even if they are a 'newbie' they are usually offered lots of help and advice and no one figures out who they 'really are'. At some stage I might receive a personal message saying "Hi, I'm really X please don't tell anyone, no one knows about Y's Autism". While I never would betray anyone's confidence either online or real life, I do find it puzzling that most tell me that even their immediate family don't know. Whilst I can sympathise that receiving the news that your child even 'might' be Autistic can be terrifying, it's important for you to have support from those who are closest to you and your child. I can understand holding off telling more distant relatives until you feel more confident and you certainly wouldn't want extended family to find out about your childs diagnosis by stumbling across something you've written online. Still, I find it puzzling that parents hang on to this information for months and months in fear of being judged by their nearest and dearest.

Although I have only been in the 'Autism world' for around 2 years now, never before have I heard a story along the lines of "I told my family my child was Autistic and they excommunicated me". I'm not even sure excommunication is the fear. Judgement certainly can be a fear; I can certainly vouch for the amount of judgement we receive from random strangers and even those who we thought would be more understanding. But do we honestly fear that our closest family would be more about judging than helping?

The number one response I received when telling people about Alex's Autism was doubt. Now that was hurtful in a way because it meant I had to explain over and over again why, although I didn't want him to be, I believed the pediatrician was right. In a way, I suppose it was sweet; everyone saw Alex as so perfect - how could he have Autism? However, over time every single person who doubted at the start has admitted they "see it now". No one ever stopped loving me, or Alex the entire time.

Autism is a hard enough battle to fight and you'll have great difficulty fighting it on your own. Constantly trying to explain away all their oddities and having no sounding board for ideas or venting outlet to place your frustrations. Creating a real life support network for you and your child is a vital step towards understanding and treatment, and as they say; unless you have walked 1000 miles in our shoes, you have no right to judge us.