Happy Autism Awareness Month (and some news)

Soon it will be April. A for April, A for Autism Awareness. In honour of which I am posting to this blog for the first time in many months.

Autism Awareness

If you are new here, it may help to know that this blog is the online presence of a book of poems about autism called First… Then… (Ginninderra Press, 2012). Still available from the publisher, or by ordering it from your local independent bookstore.

Several of the poems in this book have been used to spread awareness of autism spectrum disorder (ASD), including the title poem, Autistic Acrostic, Brain weather, and more recently I prefer, which will soon appear in the conference program booklets for the inaugural Hong Kong ASD Conference. Tony Attwood will be one of the keynote speakers.

The book First… Then… itself also recently won an award.

I am very proud that the poems have been able to speak to people in this way. Now would be a good time to thank ArtsACT, my local arts funding body, for supporting me one day per week during 2011 while I wrote the poems.

A new journey

Up to eight times a day…

Apart from giving a general update, I thought I would share something new that has recently happened on my family’s own ASD journey. My son with ASD, now a fine young man of almost ten years old, was diagnosed with Type 1 Diabetes three weeks ago.

I am so proud of how he has coped with everything – the night in intensive care, the week in hospital, the needles, drips, tubes, beeping machines, round- the-clock finger pricks to check blood sugar, insulin injections, being away from home and out of routine, all of it. There was no time to prepare him for any of it, he was so critically ill by the time we worked out what was wrong with him we just had to ride it out.

Interestingly, we had been explaining away most of the diabetes symptoms as ASD and anxiety related (increased drinking of water, increase in toilet visits, night time incontinence, being ‘off his food’). The only one we couldn’t explain was the laboured breathing, but the first hospital we tried told us that was anxiety as well (!). Fortunately we got him in to another hospital the following day, and with the care of some very dedicated people he came back to us from the brink.

And now his life has changed forever: he will need insulin, several times a day, every day, to stay alive. Along with this comes up to eight finger prick blood sugar tests a day (two in the middle of the night) and some major changes to his diet, which was very restricted due to sensory sensitivities and NOT very diabetes-friendly.

Not surprisingly this is a challenging time for all of us. Props to all the families out there already managing ASD and complex medical needs, this is not a gig for the faint of heart !

So I thought I would share our story as a timely reminder to all folks living with ASD to be on the lookout for symptoms of physical illness masquerading as ASD behaviours. And also to keep advocating for ASD friendly treatment during a physical illness (we were able to have our son inhale nitrous oxide to calm him while several drips were inserted – without this we would have needed five nurses to hold him down). Not all doctors and nurses know how to perform procedures on a person with ASD without traumatising them.

On that note, I wish you a happy and healthy April.

(And no, I have no plans to write a book of Type 1 Diabetes poems. I have no time, for a start 😉 …)

All Said and Done – light verse anthology for #ASD Charity

Some of the autism poems from the book of this blog, First.. Then…, have been included in a UK anthology called All Said and Done.

You may have noticed that the initials of the words in the book’s title spell out the acronym A-S-D, for Autism Spectrum Disorder. All Said and Done was planned as a collection of light verse to raise money for the UK National Autistic Society. It contains both poems about ASD and other humourous poems which are applicable to ASD in some way.

I am very proud to be included – especially as one of my poems, Autistic Acrostic, opens the collection. There are some very eminent poets in the book, including the amazingly talented doyenne of light verse, Wendy Cope.

Of course, it goes without saying that I donated my poems, as did all the other authors. All Said and Done is available for sale on Amazon here and is soon to be featured on the UK National Autistic Society Facebook page.

Bearing in mind that Autism Awareness Month starts tomorrow, why not buy a copy of the book for yourself, or send a copy to a friend or relative ?

(By the way, in case you were wondering, the pic above is of a note left for me by a gorgeous and mischievous 8 yr old gentleman who also happens to have ASD)

First… Then… autism poetry book on sale now

To buy your copy from Ginninderra Press , scroll aaaaallll the way down to Melinda Smith, find my third book ‘First… Then…’ and click BUY NOW.

About the book

First…Then… is a short collection of 24 poems about autism, written by the mother of a son with ASD. The poems explore many different voices from planet autism – from verbal and non-verbal autistic children, to autistic men and women, to parents, carers and siblings. Some are moving, some are harrowing, and some are laugh-out-loud funny. Together they provide a unique window into a much misunderstood facet of the human experience.

The writing of the poems in First…Then… was supported by an ArtsACT new projects grant during 2011.  During that time the poems were drafted, redrafted, posted on this blog, and Tweeted and Facebooked to within an inch of their lives. Some of them were also published in other places (Tony Attwood’s website, Scottish Autism’s blog, Aspie in the Family, Quadrant Magazine, Blackmail Press, Geek Mook and ACT Carers’ Circle, to name a few – thanks to everyone involved for their support).

Now the poems are between two covers and ready to make their way out into the real world. Maybe they’re coming to your house ? I hope so.

PS: You can take a sneak peek inside the book by browsing around this blog. Start here. Enjoy.

PPS If you’re reading this before 12 April 2012 and you feel like coming to a launch or a reading, you’re invited ! Details here.

Book launch details for First… Then…

Hello there.First… Then…, the book of this blog (a book of poems about autism), is on sale now from Ginninderra Press (scroll aaaaallll the way down to Melinda Smith, find my third book ‘First… Then…’ and click BUY NOW.

One launch down (thanks to all who came), one to go, plus a reading.

Launch Two – for the literary community and anyone else who could’t make it to Launch One – is on Wed 11 April, at 6.30 for 7pm, at Smith’s Alternative Bookshop in Alinga St Civic (in the Melbourne Building opposite the GPO). Eminent poet and novelist Alan Gould will be doing the honours at this one. Light refreshments provided, buy your own drinks at the bar.

Love to see you there !

The night before, I’m doing a poetry reading at the Gods Cafe, on the ANU campus, from 8 pm on Tuesday 10 April. Also reading (but not about autism) will be P S Cottier and Russell Erwin

About the book

First…Then… is a short collection of 24 poems, mostly dramatic monlogues in various voices. The poems focus on the experience of living with autism, but you do not need to know or be an autistic person to enjoy this book. The poems are by turns moving, harrowing and laugh-out-loud funny, and provide a unique window into a much misunderstood facet of the human experience.

The writing of the poems in First…Then… was supported by an ArtsACT new projects grant during 2011.  You can take a sneak peek inside the book by browsing around this blog.

First…Then… the book

So the 24 autism poems on this blog are going to be in a book. The title was originally going to be CircleQuirk but I have changed it to First…Then… after the most popular poem in the collection.

The book is coming out in April 2012 (Autism Awareness Month) and will be published by Ginninderra Press. At that point I will be taking most of the poems down and providing a link to where you can buy the book.

Between now and then they will remain here, free of charge for anyone to read (still copyright (c) Melinda Smith though 🙂 ). While they are all still here, I thought it might be helpful to have a Table of Contents page linking to the poems in the order they appear in the book (which is different to the order they were written and posted on this blog in).

So here ’tis. Enjoy. And I should remember to thank ArtsACT for supporting me one day a week while I wrote the poems.

First… Then… | poems from planet autism

Table of Contents

Poetry appearing on this blog was generously supported by the ACT Government

First…Then…

Brain Weather

Autistic Acrostic

Beach cricket with four year old

autistic child with acute auditory processing disorder

what the child hears

I prefer

What I learned at school

Asperger’s diagnosis: a fugue

Not the Botany Bay Song

A prehistory of autism

On holding the baby of a friend

But

Social Stories for Neurotypical Adults #27: No Dogs Allowed

All magpies are autistic

The impossible blindfold

Love song of autistic husband

An autistic woman explains the terror of affection

Shechinah – or God and Temple Grandin

AUTISM CRUMPETS

I have autism

I am autistic

AutisTweets

#autismtshirtslogans

I am autistic

A while ago I posted a poem called I have autism that was a ‘google-sculpture’. I said it was half of a pair. Here is the second half, also a google-sculpture – that is, the words in the poem are edited and rearranged results from a Google search on the phrase ‘I am autistic’.  Reading the two poems together I hope gives a window into the online autism community, as well as illuminating some of the debate about ‘person-first’ language in an autism context (does one say ‘autistic person’ or ‘person with autism’ ? Depends on who you ask…)

I am autistic…
 
because I cannot be separated from how my brain works
 
, I’m not a brat
 
: ask me about my needs
 
, not just an adult with autism. It is a part of who I am. I was born this way. I would not choose to change that.
 
, I’m not crazy.
 
. I can speak. My voice is different, not weak, and if you listened…
 
. I’m an adult, with a career, a mortgage, and my first grey hairs. I’m female
 
. I don’t have autism.  That’s a thing I’ve been saying forfuckingever. And yet people keep insisting on pointedly saying that…
 
. I’m apparently what they call “high-functioning”, but I don’t like the term very much; the division feels artificial
 
, and I think in pictures. If the philosophers are correct, I…
 
, and that’s even better !
 
and proud of it, says Indonesian Oscar Yura Dompas, at the launch of his autobiography, Autistic Journey, at QB world Book Plaza
 
: what’s your excuse ?

Social Stories for Neurotypical Adults #27 : No dogs allowed

The poem below is in the form of a social story.  Most of those living with autism will be familiar with this behaviour modification tool, first developed by Dr Carol Gray.  Social stories are used with autistic (and other developmentally delayed) people to help them understand social situations and to illustrate appropriate and inappropriate behaviour.  They are written in a very particular (and proscribed) kind of idiom, with the sentence structure kept as simple as possible to minimise potential for confusion.  Reading a whole book of sample social stories can be hilarious: ‘When is the right time to talk about Thomas the Tank Engine’, anyone ?

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

However I often find myself wishing that instead of ‘using’ social stories on my child, I could ‘modify’ the ‘behaviour’ of certain other members of the public so my child could have the right to a happy and safe experience of public space. The following poem comes out of that place…

 

 

 

 

 

Social Stories for Neurotypical Adults #27 :  No dogs allowed

I love my dog.
My dog’s name is Hackles.
I love to go walking with Hackles. It makes both of us very happy.
Hackles’ favourite thing is to run around without her leash on.
I love to see how happy she is when she does this.

There are some places where dogs are not allowed to go.
There are some other places where dogs are allowed, but only on a leash.
You can tell if you are in one of those places because there are big signs,
sometimes even with a picture of a dog with a red line through it !
I hate those signs. They make me mad !
I think it is unfair that Hackles can’t just go wherever she wants.
Sometimes I just ignore those nasty old signs.

Not everyone loves dogs.
Some people are scared of dogs.
Some children are so scared of dogs they have to scream and run away whenever they see a dog.

When someone acts afraid of Hackles, I get really upset.
Hackles is really sweet and wouldn’t hurt anyone.
Sometimes I want to take Hackles right up to the scared child and make them pat her,
just so they can see there is no reason to be afraid. 

If I take Hackles too close to a scared child it could be really dangerous.
The child might run away onto a busy road or into deep water.
Or they might scream so much that Hackles gets scared and angry and bites them.
Or they might get so upset they hurt themselves or other people, or me or Hackles.
I do not want this to happen.

I will try to remember that not everyone loves dogs as much as I do.
I will try to remember that the ‘no dogs allowed’ and ‘no dogs off leash’ areas are there for a reason.
The people and children who are scared of dogs need to have somewhere they can feel safe.

I will try to remember to do what the signs say.
Smart grown-ups obey signs.

I have autism

The poem below was written using a new(ish) poetic technique (10 years is a short time in poetry) called google-sculpting.  I have been experimenting with this technique for a while now and I find it is a good way of capturing a diversity of voices and opinions about something.  It is particularly useful when writing about people living with autism because so many members of that community spend so much time connecting with each other online.

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

I have decided to do a pair of google-sculpts, one based on the search phrase ‘I have autism’ and the other based on ‘I am autistic’ – highlighting a hotly debated issue about ‘person-first’ language but also hopefully capturing some other interesting ‘noise’ along the way.  This is the first of those.

I have autism

Do i have autism? high functioning autism, long periods of time, someones eyes
I Have Autism – Chapter 1 – YouTube
I have autism and I want you to know
True Life (TV series documentary 1998– ). I Have Autism. Documentary. Your rating: 1 2 3 4 5 6 7 8 9 10 -/10 X.
What are signs of Autism?,i have 2 month old twins and still in the …Your children are too young to worry about autism. It isn’t usually picked up until after age 2 (and 2 is early, usually more like around age 3). At this young of an age …
Autism: I have waited four years to get a kiss from my son. Now he’s kissing everybody
I’m not misbehaving, I have autism. Please be understanding
I don’t have autism. I am autistic.

How do I know if I have autism? What is autism? Autism is a lifelong developmental disability and is part of the autism spectrum. People with …
I Have Autism, my favourite book
I have Autism – Christian Forums Hey. My name is Lauren, I was diagnosed with autism in my toddler years. It’s actually very mild, a lot of people don’t even know I have it, but.
MTV’s I have Autism | try-therapy.com … MTV dares to impress with “I Have Autism.” The presentation details the lives of three very inspiring young men who all have differing …
Young I’m Not Misbehaving, I have Autism Nicholas Lombardi developed this pin, “I’m not misbehaving, I have Austism,” in a beautiful effort to …
Autism Speaks can go away. I have autism. I can speak for myself

Do you think I have autism ?
Autism Resources Miramichi Inc. – Lending LibraryBOOKS” I have Autism” – A Child’s First Look at Autism by Pat Crissey1001 Great Ideas for Teaching and …
My baby brother and I have autism
‘I have autism. What’s your excuse?’ T-shirts poke fun at disability, help educate others, mother says. My son Brandon looks like a typical teenager – until he …
“I Have Autism” Child Size awareness bracelet is great for non verbal kids in case they get separated from you. On sale now at FlagsOnCars.com, you patriotic …
Yes, I have autism. Stare if you must. I’m not paying attention to you anyway

Could i have autism ?
Fishpond Australia, I Have Autism… What’s That? by Paddy McNally Kate Doherty. Buy Books online:
I have autism. Hear me out.
Special Needs 4 Special Needs I have Autism – temporary tattoo – I have Autism temporary tattoo. Featuring hot pink text on a bright green …
I’m not rude, I have autism

Do I have Autism? – NeuroTalk Support Groups no online test is going to give you even a clue if you have autism of not. The ONLY way you will know is if you talk to a doctor, and go to …
New to group and I have autism
Syndrom Puzzle Piece by MedicalAlert I Have Autism AspergersSyndrom Puzzle Piece Ribbon 2.25 pin back button badge. Asthma, peanut allergy, severe food allergies, diabetes, tree nut.
Shop I Have Autism Framed Prints. Large selection of unique and funny I Have Autism designs. 100% satisfaction guarantee. Fast shipping

Did I have autism? [Archive] – Physics Forums
I was too “weird” for them, due to the fact that I have autism. I just did not know the rules of what you were or were not supposed to do. I would come to a party too …

I have autism spectrum disorder ? what does this mean? does it mean ….I cant make friends?….. Share and Enjoy: …
I have autism and I want to work with people who have autism, any …

I have autism and I’m not afraid to use it

What I learned at school

This poem is in the voice of an elementary school / primary school child with Autism Spectrum Disorder. The child is ‘high functioning’ enough to attend a mainstream school. Whether that means he or she can survive unprotected in the playground may be another matter…

Comments welcome as always.

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

PS  It is also in the form of a villanelle, which has a refrain that repeats according to a particular pattern. I nearly called it ‘bullynelle’. I think the present title is better though. 

What I learned at school

Again today he said he was my friend.
He made me spin around ’till I was sick.
So is that bullying, or just pretend ?

I said my money was for me to spend.
He told Miss Green I hit him with a brick.
Again today he says he is my friend.

The others, when they see him coming, send
him straight to where I am. He’s pretty quick.
So is that bullying, or just pretend ?

He took me to the toilet down the end
and wet the urinal and made me lick.
Again today he said he was my friend,

but after that he made me stand, and bend,
then poked me in the bottom with a stick.
So is that bullying, or just pretend ?

My teacher told me off: ‘This has to end.
‘By now you should have wised up to this trick.’
Again today he says he is my friend.
So is that bullying, or just pretend ?

On holding the baby of a friend

Hi there all. So sorry for my recent radio silence. I have been doing a lot of parenting and not much poeting. Hoping to redress the balance, starting now.

I am getting close to finishing the book. Very exciting. Only two more poems to go (in addition to those already on the blog), both of them nearly finished.

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

The poem below is now at the second draft stage. It is a sonnet, by the way (in case you were curious). Comments welcome.

On holding the baby of a friend

I hug and nuzzle; brush my cheek to his.
He giggles, grabs my nose and grins at me.
I close my eyes and pray no-one will see
the tear I shed at how much fun this is.
I’m sprung: ‘Clucky again? Another son?’
How can I tell her so she’ll understand ?
I had so much of this to give : I planned
to shower it all on mine.  He wanted none.

I wonder whether mothers get a store
of child-affection, swelling in the chest
like milk come in, demanding to be used.
Does having to suppress it make you sore?
MyWebMD has nothing to suggest.
I borrow babies. They reduce the bruise.