Friday, 30 September 2011

Autism poem: The Impossible Blindfold

Hello ! My name is Melinda Smith, and I am mother to two boys, aged seven and four. My seven year old has an Autism Spectrum Disorder. I am also a poet. Read more here
This is the fifth in a series of seven autism poems I will be sharing with you as a guest poster on the Scottish Autism blog.

This poem is in the voice of an adult with ASD, and explores his / her ambivalent feelings about working with a bunch of neurotypicals.
It was inspired by the writings of Edgar Schneider (Discovering my Autism) and Temple Grandin (Thinking in Pictures).

The quote from the Bible used at the beginning is one that Schneider returns to again and again in his book.  If you look carefully, you’ll see I have hidden one word from the quote in each line of the poem.
(I should also acknowledge that this poem was written with the support of artsACT)

For my thoughts are not your thoughts, nor are my ways your ways
– Isaiah  55:8
The impossible blindfold 

an autistic adult prepares for a day in the workplace

Today again I’ll strap on my mask for you;
zip up my ludicrous human suit;
force most of my thoughts into small closed boxes
so that when I speak, you are not made uncomfortable.
When I am not trapped in a room full of chattering
sometimes I can pass for one of your kind.
You few who reach for me with well-meaning thoughts:
even you have no clue how hard this is, nor can you.
If you are sighted and want to try blindness,
bind your eyes for a day, a week – you might come close.
But there are no easy ways to shut down your radar,
lock yourself in my clumsy robot cage
and be. For my thoughts are not your thoughts, nor are my ways your ways.

(c) Melinda Smith 2011

Tuesday, 27 September 2011

News and events...

Some bits and pieces of news and information in this week's blog post.

First up is a heads up for our Delicious page. This is where you'll find links to some of the latest research on Autism and Autistic Spectrum Disorders.Whilst we don't necessarily endorse the research linked to, its important to provide a resource which helps those of you with an interest to keep up to date with work being carried out in this area of research. If you're on Delicious yourself...please link to us and our page :-)

Next, there's our Scoop.It page. here you'll find all the latest news stories as well as some of the research summaries. This resource displays the infomation in a pictoral tabloid style so it's easy to read summaries of the stories before opening the full article. Try it out and become a follower...

Our facebook page is where you'll find details of all our community and fundraising activities, as well as our photo albums of past events. We've loads planned in the near future, including a Clyde ZipSlide this weekend, a Forth bridge Abseil, the Big 5K fun run, the Tune in to Autism concert at St Andrews in the square (Glasgow) and many more. If you have'nt already done so, please 'like' us over on Facebook :-)

Don't forget our twitter stream for up to the minute news and chat. Its a great way to engage with us, share resources, or just chat ! Follow us and we'll follow you back...

Our website is full of information and resources to help those affected by Autism, their families, friends and professionals who wish to access our services. Latest additions include the full text of our Chief Executive Alan Somerville's interview in this year's Holyrood review, and up to date details of our training events.

If you've accessed any of these sites, let us know what you think, or of any suggestions for improvement you might have. We'd love to hear from you :-)

Thursday, 15 September 2011

Autism poems: Autistic Acrostic and some AutisTweets by Melinda Smith

Hello ! My name is Melinda Smith, and I am mother to two boys, aged seven and four. My seven year old has an Autism Spectrum Disorder. I am also a poet. Read more here...

This is the fourth in a series of seven autism-poem posts I will be sharing with you as a guest poster on the Scottish Autism blog.

Today's post contains a number of shorter autism poems: one called 'Autistic Acrostic', and five 'AutisTweets' (what is an AutisTweet ? Explained below).

Autistic Acrostic is in the voice of a mother who experiences a small moment of clarity during one of her autistic child's meltdowns. It is also an acrostic, meaning the initial letters of all the lines spell out a word or message.  Can you read what it is? 

Autistic Acrostic
Any day now, it will lift.
Under your mask of howls, I see
Two knowing eyes reproaching me,
Incensed that I should try to shift
Some blame, for this, our hell, to you.
Mummy feels like howling too.

(c) Melinda Smith 2009
(First published in Quadrant, Volume LIII, No.4, April 2009)

This was the very first autism poem I ever wrote - more than two years after our son's diagnosis. It took me that long to feel at all able to write about it. Even so, this poem cost me a few tears.


AutisTweets: Since getting onto Twitter three 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.

The following autism 'micro-poems' were all originally 'published' as tweets from my Twitter account, @MelindaLSmith. The slashes between phrases show where the linebreaks would go if Twitter allowed linebreaks.

I should also acknowledge that they were written with the financial support of artsACT.

Here goes:

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

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

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

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

#micropoetry #ASD #autism #anxiety "I still have a 'drenaline feeling'"/so I walk u down the hall/7 years old & terrified/of Bugs Bunny

(c) Melinda Smith 2011

Monday, 12 September 2011

Alan Somerville- Mapping it out for a national Autism strategy

At the forefront of national Autism policy development, Scottish Autism Chief Executive Alan Somerville is no stranger to the complex and often frustrating problems of trying to formulate and implement strategy which treats people with Autism in a way which suits their individual needs, rather than a 'one size fits all' approach which, although simpler and cheaper, lets down most people affected by autisic spectrum disorders.

Interviewed in the Holyrood Review, Somerville talks about the main reasons for not supporting the Scottish Autism Strategy(Scotland) bill proposed by MSP Hugh O'Donnell last year. He argues that the bill would have just slowed down progress towards a joined-up national approach.

“It was quite a landmark that we chose not to support Hugh O’Donnell’s bill,” reflects Somerville. “What we saw happening in England was they produced a bill but the only measure in that bill was to produce a strategy, which strikes me as being exactly the wrong way round.”
Ultimately, the strategy being developed in Scotland will be more meaningful and have greater longevity, Somerville believes. “I think that unlike the bill, the act as now, in England that is on the statute, whether it achieves anything or not they will say,‘That’s done. We’ve done autism.’ Whereas we are continually able to say to the minister, ‘We may recognise the constraints you are under but we have not achieved this level and we want to keep going until we do.’ I think that is much more powerful."

Somerville defines Autism as not just one spectrum, but several different spectra. Severe Autism, he argues, where the individual requires 24/7 care is very different to a University professor with Asperger's syndrome and both impairments lie on very different spectra in terms of classifying disability., however we still try to push them together under the umberella of a 'learning Disability', something which is clearly not the case for the professor and many other people affected by Aspergers. He goes on to assert that Autism rarely exists in isolation, but with co-morbid conditions traditionally viewed as within mental health remits. "We need to better understand thecombinations of these co-morbid conditionsto determine the level and type of support that any particular individual requires" he says, adding that we also need to understand what the “map of autism space looks like in however many dimensions it takes to do it”.

Uncomfortable with studies which do not factor in these dimensions, Somerville and Scottish Autism have commisioned research which hopes to map out the co-morbid conditions associated with Autism with the aim of arriving at what he calls the 'escapable cost of Autism'. This he defines as measuring what happens if things are done well, with early intervention, and match that against a quality of life scale for people with Autism, for each of the different 'segments' or groups of affected individuals. "You add it all up and you come up with an escapable cost for Autism" he maintains, hoping that although this process will take a couple of years, it should "illuminate" government thinking and strategy from then on.

In the meantime, Somerville is happy with the soon to be published Strategy for Autism in Scotland. He is particularly pleased that the government has included his suggestion for framing the strategy around two, five, and ten year goals. the strategy will work by improving things such as diagnosis, post diagnostic support and intervention, and accessing services provided by local government more effectively. The five and ten year strands include transition planning, whole life strategy and joined up work across health, education and social care, with the eventual goal of getting central and local government to work together with relevant agencies. Ambitious? yes, but also achievable. As Somerville states at the end of his interview, “You’ve got research. You’ve got multidisciplinary teams. You’ve got functional area goals that are time related and build on each other. And you’ve got an administration that seems to be, at present, willing to put some money – it is not an enormous amount of money but it is enough to make progress. And I think that all adds up to quite a good story"

Thursday, 8 September 2011

Autism poem: An autistic woman explains the terror of affection

Hello again ! My name is Melinda Smith, and I am mother to two boys, aged seven and four. My seven year old has an Autism Spectrum Disorder. I am also a poet. Read more here
This is the third in a series of seven autism poems I will be sharing with you as a guest poster on the Scottish Autism blog.

This one is in the voice of a young autistic woman.
It is inspired by Donna Williams’ book Nobody Nowhere, in which she describes how feeling affection and closeness with another person was a terrifying experience for her, and made her fear that she would be ‘swallowed up’. She did, however, sometimes feel closeness with inanimate objects, and objects associated with certain loved people would become very special to her. It is an extremely powerful book – highly recommended.

My poem also takes as a jumping-off-point the poem ‘Circle and Square’ by Edwin Muir (an Orcadian, born 1887 in Deerness). Muir's poem was about the opposite problem to Donna Williams' (and one more common in neurotypical 'love') - it explores the desire to totally lose yourself in your beloved. I have quoted Muir's last stanza at the start of my poem. The full Muir poem can be found here.
I should also acknowledge that the poem was written with the financial support of artsACT.
So, here goes...

Give, but have something to give.
No man can want you all.
Live and learn to live.
When all the barriers fall
you are nothing at all.   
        – Edwin Muir, ‘Circle and Square’.

An autistic woman explains the terror of affection

A rushing of the sea:
your smile is drowning me -
I have to fight to live.
Why can’t you let me be ?
I feel in negative:
Distress is all you give.

Lost as I have been
I dare not let you in
however loud you call.
I cower in my skin
I curl into a ball.
No man must have me all.

You want to show you care?
You will not reach me there,
that is not where I live.
Just barely touch my hair
- that, I may forgive.
Live, and let me live.

Or give me for my own
a button or a stone -
something smooth and small  -
and when I am alone
I’ll feel you through this wall.
But when the barriers fall

I cannot meet your eye;
you stab me when you try
to look at me at all.
To let you is to die.
I’ll go under, I’ll fall -
I’ll be nothing at all.

(c) Melinda Smith 2011