Wednesday, 7 March 2018

World Book Day, autism, anxiety and conformity

World Book Day

I think it's great too. It's a really positive thing, and a great idea that kids and schools engage in books and reading.

But it's also a pain the jacksie...

One half of our school age family is engaged, excited, self-organising and, well, simply bouncy at the idea of World Book Day. She has some oversized black-ringed cardboard specs, and other things, to go as Where's Wally.

I have to mention that our WBD is Today. It was originally scheduled for last Friday, but Friday turned into a Snow Day. So it was rescheduled to today. This is significant.

The other half of our school age family doesn't like being the centre of attention in social situations, doesn't like being looked at, doesn't like people making a fuss, won't like anyone asking him "who have you come as?", would just rather nobody spoke to him about it, unless he's ready to speak first. Having to dress up in anything out of the norm (i.e. not uniform), causes significant levels of anxiety for days in advance - not to mention various upheavals on the day itself. Autism, anxiety and just being a normal kid with a few worries, a mix of those things, or just one.

Having to go through this "build up" twice in the space of a week - due to the Snow Day - doesn't help. Being cooped up inside for much of the bitter cold - rather than outside bombing about on a bike - doesn't help. Your sister having a friend over for a sleepover at the weekend - doesn't help.

But we're there... he is dressed up today as Mike Teavee, the "modern" version who's into video games (yup) rather than pop-guns (I'm guessing they're not a great idea for school?). It pretty much means he's wearing normal clothes, but he's got one discreet accessory (a cardboard Game Boy) to go with it.

He's content, he'll have a great day.

And yeah, I'm having a moan, but it's a wee bit demoralising that WBD is something to get through, not necessarily to enjoy.


"takiwatanga" : Māori for Autism

Literally: "his or her own time and space"

For people who "have their own timing, spacing, pacing and life-rhythm".

Wednesday, 14 February 2018

Autistic meltdowns are Not temper tantrums

On the subject of "meltdowns" and why an autism diagnosis is so helpful. (See also National Autistic Society)

Meltdowns are Not temper tantrums.

Let me repeat that, because it is So important to understand: Meltdowns are Not temper tantrums.

But they look like temper tantrums, right?

Sure they fucking do (to begin with). And an autistic child is equally capable of either. And that's a clue as to why, without a diagnosis, without going on a journey of understanding, without becoming connected to other parents who "get it"; who can share often near identical experiences, it is so hard to tell.

But think on this: how often does a neuro-typical kid have temper tantrums, and at what ages?

Terrible twos? Becoming less beyond that? From perhaps frequent, to weeks, months apart, maybe never, once a kid has started school? As a child learns more about themselves and how they fit into the social environment, they learn the norms of behaviour and adapt to them. Yay!

Meltdowns are Not temper tantrums.

Meltdowns happen when an autistic person is so overwhelmed that they lose behavioural control. And you can't and mustn't try to handle them like temper tantrums.

But Why are they overwhelmed?

Well, that's a whole other topic.

But for now consider the "spoon theory", i.e. we all have say 12 spoons of energy/power to do tasks in a day, including basic things like brushing teeth, which for me might take up just 1 spoon, or probably a fraction of a spoon.

A neurotypical person might get through the day and use up all their spoons, or not, or maybe they extend themselves a bit and end up running on empty, or shattered. But maybe a Mars bar or a coffee and, hey, we got ouselves a spoon extension...

An autistic, however, may find that brushing their teeth takes up 2 spoons. The sensory triggers alone - something in their mouth, sensation of brushing, taste of toothpaste - could be abhorrent to them (sensory trigger), let alone the anxiety caused by knowing they have to do this task soon, and how that anxiety may ramp up in the moments (minutes, hours even) in the build up to it (anxiety trigger).

As an analogy, think how you might feel having to strip naked and get into a bath full of tarantulas for 3 minutes twice a day.
If you hate spiders (your sensory trigger), you might see how this repetitive twice daily task might do your fucking swede in, huh? It might cause anxiety, mental fatigue, and much more.

Each autistic person is different, and has a unique set of triggers. But most go through the day encountering many triggers that quickly use up all their spoons. Those triggers are often sensory, but very hard to spot or understand are the many triggers in seemingly ordinary social interactions, and places like Schools double down with extra demands for them to focus on cognitive tasks and learning.

As a parent, once you understand that meltdowns are Not temper tantrums, you can start tracking back from meltdowns to what were the triggers, and how to avoid them (the tarantulas!) or manage them (brushing teeth).

We're still looking for the right toothpaste, by the way :-)

Monday, 12 February 2018

Autism diagnosis is a Way Forward not a "way out"

I have seen a lot of frustrated responses from parents of autistic kids to recent national newspaper articles suggesting there is "over-diagnosis" of autism these days, that a diagnosis is a "way out" for middle-class parents from "taking responsibility for their own failings", that they see the autism "label" as a "badge of honour".


As I see it, a diagnosis is a "way forward". A signpost to getting the right information to understand and help a child, and access to support networks (generally charity-funded or just other parents).

Historically ASD, and other forms of neuro-diversity, have been chronically Under-diagnosed with sometimes significant consequences - there are recent studies showing strong links between undiagnosed ASD and a range of mental illnesses, depression, alcoholism, drug abuse, and consequent suicide rates.

There is a high incidence - currently - of middle-aged adult diagnoses, which for many concerned is often described as something akin to finally being given the picture for the jigsaw puzzle instead of just a box full of the pieces.

As for "responsibility". Fuck. Me. Carrie Grant's blog mentions the daily micro-adjustments required to manage a child with autism. That's true, but also understates the situation of many. Many parents are constantly *on their knees* with fatigue, desperation and despair, often with zero support from traditional family/other networks.

Right now, we're feeling ok. *I* say OK, but I'm not at the sharp end. Mrs T gets that. She's the one at home today with half-term resonsibilities... etc.

Noah is generally settled right now. He is attending school. The major meltdowns are currently not daily. But everything remains "a process". Things take time. A lot of time. And patience. Major meltdowns are avoided by those micro adjustments, that patience, that time. The diagnosis has been central for us as parents gradually retraining ourselves, our outlook. Far from avoiding responsibilities, a diagnosis is helping us meet them.

(Oh, and btw, by "major meltdown" I include things like spending up to a couple of hours shouting, screaming, crying, punching, making holes in walls, throwing dining room chairs at parents, writing rude words in marker pen on bedroom walls and ceiling, jumping up and down on a bedroom floor so hard that debris falls from the ceiling into the room below... I could go on... both parents have bruises - physical and mental, generally all the time - to prove it.)

It feels hard work right now, but it's been far worse. We also know other parents whose kids were doing ok at primary school but are now so full of anxiety and issues (at school) that they're struggling to attend ... At. All... Not just days, but often months and years not at school.

So when someone says parents are wearing an autism diagnosis as a badge of honour, they need to take a long hard look at themselves and the prejudice and misconceptions that inform that viewpoint. Sure parents celebrate their kids' strengths, often a result of that neuro- diversity, and why shouldn't they?

Autism isn't the badge of honour, it's the unique abilities, sensitivities and character of a child. Any child. All children.

Friday, 5 July 2013

Day 7 - Manresa-Barcelona - home run

Start: 8:20
Finish: 12:40
Distance: 66km
Cycling time: 3:00
Top speed: 63kmh
Punctures: 0
Mechanical failures: 0
Lunch: Barcelona :-)

The home run. Not much to say other than we made it, and in good time for our earliest tour finish. Plenty of time for me and Adam to freshen up to meet the girls at the airport.

Early cloud and mist and busy roads gave way mid morning, affording one view of the spectacular Montserrat mountain range, and giving us one last sun-baked climb, over the Corresol, before our first views of, and descent into, Barcelona.

A few wrong turns, but map in hand we quickly found our hotel.

Time for a rest :-)

The cloud cleared for a brief sight of Montserrat

First view of Barcelona


Thursday, 4 July 2013

Tour curios - The Pyrenees 2013

A few random items from our 2013 trip...

Mary looking after the Chateau at Saint-Blancard

Holy Candle vending machine in Lourdes

Placemats at Hotel Les Deux Cols in Sainte-Marie de Campan

John being snubbed by a cow on Col d'Aspin

Our original planned route near Arties

Our bikes were stored in the Discotheque in Montferrer (and we were given the key)

All that marks the France-Spain border


Brandies from "Pedro"

Not the shortest cycle lane we saw

Day 6 - Montferrer-Manresa

Start: 9.15
Finish: 17.10
Distance: 118km
Cycling time: 5.10
Top speed: 73kmh
Punctures: 0
Mechanical failures: 0
Lunch: Solsona (13.00-14.50)

So, the home stretch begins... We weren't looking forward to joining a major trunk road, peppered with tunnels, South for around 70km, but things turned out rather pleasant.

Not only was it generally downhill all the way, but the tunnels could be bypassed by taking short stretches of the old road that took us around instead of through various spurs in the mountains. Further, the road descended through a spectacular steep sided gorge before the valley opened out into gorgeous scenery around a long and beautiful lake formed by a dam further South.

Somewhere South of Oliana we turned East towards Solsona. A fast stretch at first for our mountain-hardened legs, before we hit a surprise incline. This turned out to be a 450m Category 2 climb of the Cortada de Clarà at a height of 880m and with a long stretch at over 9%.

We deserved our leisurely and fine lunch at a lovely restaurant in Solsona before heading off, mostly downhill again, towards our destination, Manresa.

Our first lake view

Spectacular view from the old road

Almost out of the mountains, but beauty everywhere

Me. In front of a big rock

Atop Clarà. Our last big climb?