Asperger’s diagnosis : a fugue

Poetry appearing on this page was produced with the generous support of artsACT

This poem is in the voice of an eight year old boy who  has recently discovered he has a diagnosis of Asperger’s syndrome. It is difficult to explain, so I’m going to resist the urge to commentate and just say: read it. Think of it more like a piece of music than like a story with a beginning, middle and end. Comments welcome.

Asperger’s diagnosis: a fugue

The cup finishes. I see. I look and look and hold on to it. It makes sense now. Cup. Hand. It finishes.
In my football draw there will be no elimination matches
I don’t have Asperger’s syndrome.  I was terrified the horses and cows would fall off the hill
Here comes the Schumaker-Levy 9! Here it comes !
We called for hours and hours, why didn’t you answer?
I was being under a pyramid

The cup finishes. It makes sense now. I don’t have Asperger’s syndrome
David says I do but he’s wrong.  In my football draw the only elimination match will be the final
If there were no gravity we would all float up into the air and the oceans would leak away into space
We called for hours and hours, why didn’t you answer?
I dreamed there was a big chicken in my room trying to eat my legs

I don’t have Asperger’s syndrome. I look and look and hold onto it.
You say I do but you’re wrong. In Me-land money, the notes start at seven cruzlaks
Elimination matches are REALLY unfair
Roman baths were a lot like our health clubs
We called for hours and hours, why didn’t you answer?
I was terrified the horses and cows would fall.

Cup. Hand. Cup. Hand. Aspergers’ syndrome is dumb.
I don’t think there should be any more elimination matches, ever. I don’t.
The doctor says I do but he’s a baddie !
The notes start at seven cruzlaks because there is a five cruzlak coin
We called for hours and hours, why didn’t you answer?
The elephant bird was the biggest bird that ever lived

We called for hours and hours, why didn’t you answer?
I knew where you were.

I should mention that parts of this poem are a poetic response to the book Smiling at Shadows (Junee Waites & Helen Swinbourne, HarperCollins 2001), about Junee’s amazing son Dane and their journey so far.

all magpies are autistic

Poetry appearing on this page was produced with the generous support of artsACT

This poem pretty obviously takes as its starting point the picture book All Cats Have Asperger Syndrome by Kathy Hoopman (and its companion All Dogs Have ADHD). However my poem experiments with another animal which is not quite cute enough for a picture book – the Australian Magpie.

 Readers from the Northern Hemisphere may not know about this bird, a beautiful but quirky creature about the size of an adult forearm, with black-and-white plumage (like its northern namesake) but with markedly different behaviour. They nest in eucalypt trees and are supremely comfortable in suburban gardens.  In spring, adult magpies defend their nests by aggressively swooping on all perceived intruders (i.e. passers-by) within about 300 yards of the nest.  Not only does this include pedestrians, but cyclists and cars as well ! Springtime magpie attack is such a public safety issue that many local councils erect signs like the one pictured at left.  This feature of magpie behaviour is alluded to in the poem, as are many other interesting magpie peccadilloes.

On another level the poem, like both of Kathy Hoopman’s picture books, plays with the idea of labelling of behaviour: what looks aberrant to one group looks perfectly normal to another. This idea may resonate with you if you have ASD - or if you know, care for and / or love someone on the spectrum. Enjoy.

All magpies are autistic

odd body postures and limb movements, such as twisting or flapping

                flutter-flutter. puff. flap-flap. stand. stalk. stop. hoppy – hoppy – hop. stop. waddle-potter. waddle-potter. stop. step. step. step. head on one side. stalk. stalk. stop.

misinterpretation of the intentions of others, causing antisocial behaviour

                Warning…Warning…Birds swooping! Birds are nesting in this area. If you come too close, they may attack !

failure to recognise social concepts such as personal space

                ‘Mum! The magpie’s trying to stand on my sandwich !’

appetite for substances largely non-nutritive (pica)

‘Muuuum!’ Now it’s trying to eat the plastic wrap!’

seemingly random outbursts of speech and noise-making

                ‘Quardle oodle ardle wardle doodle, the magpies say.’*

extreme absorption in one restricted activity with apparent obliviousness to surrounding environment

                stock still. stock still. listen. listen. statue. statue. stock still. stock still. listen. listen. statue. sta – STAB THAT WORM !!

frequent self-stimulation by viewing shining, sparkling or rapidly oscillating objects

                pretty pretty alfoil. twinkle. twinkle. crinkle. love to watch. shiny bottle cap. light. light bouncing everywhere. pretty.

failure to understand social boundaries and lack of concern for the views of others, leading to transgression of behavioural norms

                pretty alfoil. want. take it. take it ? take it ! SNIP !

 

 

(*from Denis Glover‘s poem, ‘The Magpies’)

autism crumpets

Poetry appearing on this page was produced with the generous support of artsACT

I have been having fun with anagrams this week. Did you know there are 107,143 possible anagrams of the words ‘autism spectrum’ ? I picked a few of my favourites and made a poem for you. It does actually make a kind of alien sense if you read it through like you would a normal poem - as a story told from the outside, from the perspective of observers and carers.

By the way, pica (mentioned in the poem below) is a condition where a person has an appetite for things that aren’t food – e.g. soil, nails, paper, etc. Some ASD folks have pica in addition to their other challenges. Note it is different to oral sensory-seeking behaviour where the person sucks and chews things – with pica, they actually want to eat them.

PS : If you want some anagram fun of your own, go play with the internet anagram server.

 

autism crumpets

Static ‘me’ rumpus.
Imp tutu screams.
Mute. Strums. Pica.
Eat up! Mm! Tics-r-us.
Mute Mac purists.
Um…miscast erupt?

Up came mistrust
(rips Mum acutest).
Impact: muse rust.
Tacit ‘summer’s up’
captures its Mum.

Sure must impact,
must impact user.

Mum stirs teacup.

But

This poem explores a sibling’s perspective on living with autism. I hope it shows how  love, admiration and acceptance are mixed up with the resentment and sadness that being a special needs sibling can bring. Comments welcome.

But

When I asked him about his favourite game DeathBattle 5000 I said ‘level’ instead of ’round’.
He kicked me in the shins.
Mum kicked us both off the computer.
After dinner he patted my nose and smiled.
Love my brother. Sometimes he gets angry, but.

I wanted us all to go to Mark’s house to play with his trains.
My brother lay on the floor and screamed ‘I HAAAATE MAAARRRK!!’ (Mark is his friend).
Mum said I would have to go with her another time.
Before bed, he read me a Captain Underpants story.
Love my brother. Sometimes he gets angry, but.

I wanted to have my party at Crazy Monkeys Play Centre.
Mum started writing the invitations. My brother read them and tried to tear them up.
He punched me in the tummy. ‘I’m NEVER going to Crazy Monkeys. EVER. AGAIN !!!’
(We were there last week. He went down the giant slide twenty four times.)
Mum said I can still have my party there. Dad will stay home and look after him.

At bath time my brother gave me a squashy hug. He said I was his favourite thing.
Love my brother. Sometimes he gets angry, but.

First…Then…

Poetry appearing on this page was produced with the generous support of artsACT

This is one of the hardest poems I have ever had to write. I say ‘had to’ because I have tried several times to abandon it but it has kept on coming back to haunt me.

The poem is for parents. It is a pretty frank account of living through the first few years of life with a child with neurodevelopmental problems, including diagnosis and starting therapy. If you yourself have lived through this you may need a kleenex or two handy (although the poem ends on a positive note, it doesn’t pull punches about how dark things can get). If you have people in your family or circle of friends who still don’t get why you’ve been acting so weird since your child with difficulties was born, make them read this.

Please feel free to comment below. I should also acknowledge that this poem was written with the support of artsACT.

First…Then…

First change nappy
Then Thomas the Tank Engine

First clothes on
Then sandpit

First wash hair
Then chocolate frog

First the only baby crying all night in the hospital
             Then the only baby wailing for the whole of mothers’ group
First the only mother convinced her child was permanently angry
             Then the only one holding him in her arms and doing deep knee bends to calm him down

First thinking it was normal to scream until throwing up whenever we changed routine
             Then shocked when I realised other families didn’t have to live like that
First astonished he could read at eighteen months
            Then astonished at his shrieks every time his baby brother cried
First proud of every fact he could recite about the planet Jupiter
             Then wondering why he needed twelve weeks of physio to learn how to jump

First hair cut
Then play with spray bottle

First stop biting Mummy
Then play with sliding door

First poo *in toilet*
Then flush

First letting his father talk me out of it
             Then talking myself out of it
First knowing those therapists just didn’t get my child
             Then googling autism with a chill in my heart
First joking about ‘our little Rain Man’
             Then realising the joke was on me

First paralysis
             Then fear
First incomprehension
             Then overload

First Music Therapy
             Then Homeopathy
First Triple-P Parenting for Parents of Children with Disabilities
             Then Encouraging the Reluctant Eater
First Occupational Therapy
             Then the social worker
First trusting the system
            Then realising the system didn’t care enough or have enough money

First sit at table to eat
Then spinning with Mummy

First swallow medicine
Then build washing machine from cardboard boxes

First reading lots of parent testimonials
             Then feeling like scum for not doing six hours of therapy with him every day
First wonderfully affirmed by Welcome to Holland
             Then convinced Welcome to Holland left a lot of shit out
First talking to happy well-adjusted mums of older kids on the spectrum
             Then terrified our family would disintegrate before our kids ever got to that age
First poring over Autism and Asperger’s Syndrome for those who love and care for three-to-seven- year-olds
             Then realising the only book I needed to read was The Curious Incident of the Dog in the Night Time

First joining support groups
             Then walking out of meetings because the horror stories people told at them could not possibly be true
First counselling
             Then drugs
First sobbing to my friends
             Then avoiding my friends and hating their normal uncomplicated children
First hearing that carers of autistic children are as stressed as soldiers in combat
             Then bawling my eyes out

First thread beads on string
Then letterbox-counting walk

First stay at special needs soccer for ten minutes
Then computer time

First nearly destroying my marriage
             Then clinging to my marriage
First regretting the second child
             Then realising the second child would probably save us all
First wanting my husband to see things my way
             Then grateful he didn’t
First mourning my old life
             Then understanding you never really get it back anyway
First obsessed with getting the whole family to accept the diagnosis
             Then learning to take what help I could get and live with the elephant in the room

First shame
             Then resentment
First desperate for pity
             Then desperate for respite care
First whining
             Then laughing

First crawling through it
             Then writing about it
First today
             Then tomorrow

Twitter poems about autism

Since getting onto Twitter two months ago (yes, I know, a little late…) I have been exploring the 140-character format, complete with #hashtags, as a way of writing condensed poems.  My autism twitter poems are collected below. The are not exactly twaiku, but I think they’re still kinda punchy.  The slashes between phrases show where the linebreaks would go if Twitter allowed linebreaks. I’ve been struggling with what to call them. Autistweets? Suggestions welcome…

1
my boy perches on the pool’s edge/flapping his wet hands/people are staring/he sees only me, and grins:/’I caught an imaginary trout’ #ASD

2
#micropoetry #ASDparenting #firsteverjointsleepover Both sons away tonight/after 7 years/I don’t recognise this quiet/or this calm

3
#autism #newdiagnosis #bewilderment with that one word/a glass wall traps me/i thump and plead/the doctor looks away

4
The arrivals board/says my plane has landed/your brother hugs me/you won’t let us go home/the cascading numbers/are too beautiful #ASD

5
#micropoetry #ASD #autism #anxiety “I still have a ‘drenaline feeling’”/so I walk u down the hall/7 years old & terrified/of Bugs Bunny

6
#ASD #autism How about this one, madam:/calm to chaos in 60 seconds/looks like a Ferrari/handles like a submarine/oh and we lost the manual

7
4 years old/you splinter doors with your rage/There are questions I dare not ask now/One starts with the number 14/another with 40 #autism

8
locked out of our new house/I scrabble at flyscreens. You shriek./Note to self: explain #autism to the neighbours/before they call the cops