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.

Stimming or "why every shirt has holes in the neckline and you hear battle noises all friggin day"

Talk about "stimming" to most folks and you'll get the blankest of blank stares.  When I first heard it I thought it was something vaguely, well, naughty.  The definition doesn't help dispel that assumption either. Stimming is any self-stimulating or self-soothing behaviour.  (It turns out it doesn't actually mean having a turn with oneself.)

It can be anything from dangling your shoe on your toes or twirling your hair, to flapping your hands, chewing clothing, biting nails, bouncing up and down...just about anything really can become a repetitive behaviour that a person finds calming. I'm a chronic hair-twirler and always have been. Even now I have short short hair, I still find the longest piece and try to twirl it. I also used to scratch at the skin on my arms when anxious and I have a mass of white scars there now.  F-Man chews his shirts, any cords on his sun hats, his drink bottle. He throws himself against walls or furniture. Bangs his head on the couch, or harder things sometimes. He shouts random stuff. He babbles. At the moment, he waves his arms around and pretend fights and makes light saber noises. All day. Every day. That's such a joy.  He has a certain way of speaking (almost out the side of his mouth, and babyish) that he enjoys and when he is talking about things he is excited about he will use that voice constantly. His life at the moment seems to be one long bout of stimming.

The advice given to parents and teachers is to never force kids to stop their stim because it gives them comfort, enables them to concentrate or relax, or self-soothe. They will end up replacing it with another one that may well be worse, or they may develop anxiety. Though I guess if your kids stim is smearing poo everywhere, you'll take whatever the replacement is. Forcing them to stop would be like having an itch that you were never ever allowed to scratch.

I've read plenty from parents who discuss how they redirect their child when the stimming is getting too much, by giving them some form of distraction or a different sensory input. A bath, sand play, something off the exercise sheet from the OT, bouncing on the trampoline, maybe a cuddle and a movie. There are LOTS of parents who write about this. They never write about how much it drives them absolutely insane and they want to kill their kid if they do it one more bloody time.

Well I'm not like those parents. I'm going to admit that I have no freakin' idea how to distract and redirect my kid and yes, how I just want him to shut the fuck up for one goddamn hour.

Stimming is usually a reaction to a trigger. It might be a bright noisy environment such as a shopping centre. It could be a certain smell or noise level. It could be lack of routine during the school holidays. To control the amount of stimming, we need to know the trigger.  But how do we find the trigger when there seems to be no pattern to it at all?  I'm clearly supposed to know what it is because I should know my son well enough after 7 years to have something resembling a clue. But I don't.

The stimming has got wayyy out of control over the last few weeks.  Every single minute of every waking hour is the Stim of the Moment; fighting noises from Star Wars, recreating battles from Star Wars in Star Wars Lego, or talking about battles in Star Wars. He wont be distracted from it. He has Aspergers ffs; you think he can be dragged from his latest obsession? Hell-to-the-No.  If we try a different activity, he will somehow find a way to incorporate fighting actions and noises into it.

I'm at the point where I think there is no other choice but to force him to stop, naturally making me the Bad Parent who is traumatising her child. I seriously have no ideas at all how to get this to settle down.  I dont know how to get him to replace the stim with something a little more socially acceptable than acting out death and destruction, or how to find the trigger that makes him stim every waking moment.

It was easier before we had his diagnosis. Then I just yelled at him and he would stop for a while. (By "a while" I mean an hour. And by "yelling" I mean I occasionally may have used the F-word and blasphemed.) Of course, now I can't do that because it's not like he is deliberately doing it to be a little shit.  At least I don't think he is. Fuck. What if he is??

May as well call Child Protection.  Maybe they have some idea what to do.