What To Do Before An Assessment

In every ASD Facebook group or page that I am part of, inevitably someone new pops up and asks "We are having our child assessed soon. I've no idea what to expect. What do I need to do to prepare?"

My answer: Write down everything. And I mean everything.

Every little thing that you remember about your child from the day they were born about the way they did things, how they slept, how they ate, developmental milestones, behaviours that weren't quite right, things you thought were a bit strange but you couldn't put your finger on what was going on. Wouldnt sleep unless wrapped tight as a bug? Write it down. Screams at hand dryers in bathrooms? Write it down. Changes the type of voice used sometimes? Write it down. Cant handle paint colours being mixed together? Write it down. Takes a long time to respond to questions? Write it down.

Spend weeks doing this. Every time a thought pops into your head, a vague memory from years ago perhaps, jot it down. Write a catalogue of your child's behaviours and put them into groups. If you are having an ASD assessment, match them against the DSM5 criteria. Otherwise just put them into logical groupings: development, communication, sensory, behavioural, social.  Print it up and take it with you to your first appointment and watch the doctor fall over in amazement and gratitude.  It makes their job so much easier when there is a clear list of the issues at hand, and they take you far more seriously than if you (like so many) sit down and in a moment of anxiety forget every important thing you ever knew. Sometimes the Parent Questionairre they give you doesn't contain the right questions to elicit all the pertinent facts, or the clinician doing the assessing doesn't probe deep enough.  Hell, if you have to, take videos of your child so they can see for themselves what may never present in a clinical setting.  If you have everything that you know about your child in black and white in your words it will be more powerful than you can imagine.

Diagnosis: confirmed

There is a neatly stapled pile of papers in my house tonight. They confirm my son has special needs, and that he will always have them. That he is not like other kids and never will be. That my life will present many more challenges than the average parent's.

Today's mail contained the thing I have been waiting 6 years to receive: F-Man's Diagnostic Assessment Report.

With that piece of paper comes an official label and as we know, people love labels. E specially those who decide if you should get any help.   His label is Aspergers, which from July 1 will be known as Autism Spectrum Disorder when DSM5 kicks in.  He met every single criteria, not just "must meet two of 5". High achiever.

Its weird, seeing in writing that professionals recognise in him what I have for years.  A verbal confirmation is one thing: It's a tick in a checkbox, a chance to flick the doubting husband the metaphorical Bird, and a surprising sense of relief.A 12 page report with observations of behaviour is something entirely different. It's a shock to read about his functional difficulties & how clearly he struggles with communication and social skills.

I have spent countless hours over those 6 years wondering "well maybe it's not anything serious, maybe it's just (insert random excuse for behaviour)" while at the same time being certain that he had Aspergers. Second-guessing myself for 6 years. That's a lot of not trusting my intuition. I hope I have finally learnt that lesson, for my intuition has turned out to be right every single time, but I rarely listened to it.  I'm none too bright sometimes.

Now we have it written in unequivocal black and white. No more arguing-with-self about it.  Our child has Autism.

There is a neatly stapled pile of papers in my house tonight, which will allow our child access to services he has needed his entire life.

Let's get this show on the road.

At The Lower End of the "Awareness" Spectrum

Are you telling me because you lost them?

Now that's just creepy

Are you? That's great! I'm the embarrassed proud owner of a really stupid cat! See, it says so on my t-shirt too.

Do you need to know this? Does it make you think better of me? Does it spark any sort of feeling in you that perhaps you should read up more about stupid cats? Or does it make you think "why the fuck are you advertising your stupid cat?"

It's the end of Autism Awareness Month, and there seems to have been something akin to a "movement" going on.  It involves announcing - via a t-shirt or bumper sticker - the fact that you are in some way connected with a child on the spectrum.  This movement seems to have confused "advertising" with the concept of "raising awareness".  I'm all for raising awareness about important issues: autism, palm oil, Kim Kardhasian's arse.  There are a whole shitload of misconceptions in society about what autism is, how it affects people, what it "looks like", whether all people with autism are like Rain Man.  Those misconceptions must be changed, so what one needs to be doing is educating people.  Giving them concrete information. Facts. Sound bites.

T-shirts, coffee cups, bumper stickers and pins on Pinterest proclaiming that you happen to know someone with autism does about as much for the cause as me wearing a t-shirt saying "I love polar bears" when I want people to stop being dicks about whether global warming is happening or not.*

So no, I don't need to know that you're a proud parent of someone with autism, in the same way as I don't need to know you are the proud parent of someone gay or on the Honour Roll or the winner of the National Hotdog Eating Competition.  It's good that you're proud. But I don't need to know about it.

If you want to actually do something to raise awareness and educate people, write an article for your local newspaper. Get involved in an autism activist group. Talk to the kids at the school your child goes to, or any school for that matter.  Go on facebook and twitter and rant to the world. Write your own blog. Write to your government and ask why their education campaigns are so pitiful, why the funding is a disgrace and why you cant get your kid in to see an OT for almost a year.

But ffs stop with the ridiculous slogans. All they do is make the dickhead in Aisle 7 (to whom these slogans are generally aimed) think "what the fuck do I care about you or your kid?" and ensure that neither he nor those like him will give a damn about the real message.


*It is real. Stop being a dick.