Posts by Katharine Annear
Autism Awareness Month in Australia
Published May 20, 2009 @ 10:06AM PT
[Ed. The U.S. hasn't always done so well at autism or disability "awareness", but what about other countries? Katharine our guest blogger from Australia gives the scoop--]
May is Autism Awareness month in Australia. One of the most prominent autism organizations in Australia is Aspect. Aspect is a state based organization with national aspirations. This month they have launched a new website with a new community service announcement asking us to “Imagine a lifetime with autism…” Whilst I can’t imagine my lifetime without autism I am struggling to imagine how the general public will come to understand autism after watching this CSA. The CSA offers no real insight into ASD and offers no suggestions as to how the community can even begin to accept people with ASD. Taken literally this CSA may even lead Joe Public to believe that people with autism can’t see or hear. So why is Aspect so out of touch? Local Autistic people think in part it may be because Aspect doesn’t have Autistic representation on their Board of Directors. They are concerned that although well qualified potential Autistic Board members exist the Aspect Board seems to be a closed shop, with an all male old-boys club style membership. Aspect will later in the year host the Asia Pacific Autism Conference and a look at their keynote speakers reveals only one person on the autism spectrum deemed worthy of being invited to keynote. Not sure that Autism Queensland is quite on the money either with their Dress Differently Day – not much of a step away from a South Australian school’s dress as a disabled person day!
Is this the way Australia is when it comes to autism - people on the spectrum left out in the cold?
Well thankfully not! Visit auties.org and you’ll find an autism run employment and social networking site. There is also Alpha Autism with Autistic Management Committee members running an innovative fundraising and awareness campaign Drawtism. What I like about Drawtism is that is closer to getting it right - some awareness raising, community building, fun and not demeaning. Still a ways to go but I think that it shows that Autistic representation at a management level helps steer the ship closer to the way things should be for our communities.
An Autistic on GETTING BETTER!!
Published May 03, 2009 @ 04:57PM PT
[ed. Many thanks to our Australian guest blogger Katharine for helping out with a post when I could use the help, well, quite a lot :-)]
I am currently reading two books--'Embracing The Wide Sky' by Daniel Tammet and 'See Jane Lead' by Lois P. Frankel. Why am I reading such books? I have just asked myself that question and the answer doesn't come all that easily. It's something about the search for meaning and wanting to be better. Better? Better than what? Better than anyone who has ever said that I can't.
But lately I'm the one with the broken record - the 'I can't' story, the 'I'm not good enough' story, the 'I'm a fraud' story. Years of listening to others and the compounding self generated ruminations has brought me to another existential impasse. I am left in the dark having to prove myself to myself.
Tammet, an Asperger man with Savant syndrome writes of a possible way out of my quandary. He speaks of multiple intelligences, training the brain for happiness, and practice and perseverance being at the root of exceptional skill. So it is as easy as that - I'll just train my brain to think BETTER.
BETTER? BETTER THAN WHAT?
Better than men? Lois Frankel is going to tell me how to do just that, be better than men - at work; in fact she will share 99 Ways for Women to Take Charge at Work. I'm going to combine High Self Expression with High Concern for Others and become the Assertive Leader I need to be to influence my colleagues.
Both Tammet and Frankel talk about IQ and EQ the Intelligence and Emotional Quotients. Tammet discusses the alarming history of the IQ test and its use as a tool for the weeding out of imbeciles. Both agree that the Emotional Quotient has been a useful addition to the way we view behavior and assert that, according to Goleman (the father of EQ), the better my EQ the more likely I am to succeed.
Frankel also introduces LQ--the Likability Quotient. Likability Quotient!--I do believe I'm thwarted.
Intelligence--I have accepted that my Autistic Intelligence can't be measured and that I am left without a full scale IQ, Emotionality--well I'm very emotional but it takes exceptional focus to rein that in and try to begin to read and understand the emotions of others (a science for me), but Likability--how do I contend with that one. Apparently like autism, likability also falls on a spectrum. My LQ must fall somewhere between an inordinate need to be liked and a complete lack of care for how others perceive me. Let's not forget for a second that I also have an AQ (Autism Quotient) [ed. link to AQ]--I've taken the online test!
I'm going to have to think about my LQ while I continue to Embrace Tammet's Wide Sky.
Maybe with my combined IQ, EQ, AQ and LQ I will be BETTER!
BETTER?
BETTER THAN WHAT?
A Life Poetic
Published February 04, 2009 @ 04:00PM PT
My life as an Autistic person has been marked by some powerful experiences. I wanted to share some poetry that expresses my experiences as a child, as an institutionalised teen and of finding community.
Clamoring
it is clamoring
turned up too loud
the branch scraping on the gutter
at the back of her mind
ever clamoring,
relentless,
no peace,
a past waiting to be rediscovered
cracks opened by her words
and an existence starved of meaning
yet seeming meaningful
where did she come from?
ever pacing
up and back,
up and back
through her mind
its grubby hands
over her mouth
and the feeling
that if she were sick now she would drown
it’s there clamoring
breaking pieces off her soul.
in a small room
fists slam home,
they stare ice
shards of ice
through her soul
this is the past or part of it?
‘are you in there
are you still there
or did you leave for another planet -
probably did
f**k knows
let’s go find someone else’
never knowing the word no
or having the power to use it
never tasting the truth
or an approximation of humanity
she would ask for punishment
if she thought it would help
but another’s tongue is swift enough
and relentless without rhyme or reason.
they marked her from early on
and marched her through her childhood
tasting blood more times than she should have
teeth meeting her knuckles
sometimes brought relief
from the seemingly painless
baptism of human chemical flight.
Institution
Fear ate her a path to its door.
Once inside, the four walls contained her.
And for keeping’s sake they named her.
She stayed there under sedation.
This, a double incarceration.
Lucidity left her
and she stumbled
through halls and doorways,
weeks and months.
A hole where her thoughts should be,
faces talked at her, assuring her,
that this was a better kind of reality.
When she looks back now
she knows she suffered
under the cure regime they proffered.
Not just a question of chemistry,
she now knows her brain works differently.
Not a split or a schism, she has Autism.
Traffic
numb the traffic of the mind.
seated in the stark room she bathes
in emotion
suspended between the past and the present
robbed of the moment –
grasping at the liminal
shaping the ether with her subconscious
reality fragmented
walls splintering
senses overwhelmed by open space.
Choice mediated
by a chemical straight jacket.
The Lost Soul?
You came to drive her
out of the back of her mind.
But in the back of your mind
there is doubt
as to whether you have the right
to be pursuing the root of her ‘madness’.
in all of its complexities
but fear of the unknown
would eat a hole
in the fabric of your existence.
You can be assured though
that there are others like her
who will hold a mirror to your soul.
Ythanya of Aspergia
She is unsure of what she makes of first light
for she hasn’t seen it for so long.
She has kept strange hours.
The days awaited so eagerly by all her kind
have come upon her, almost unannounced.
Since Saturn returned,
time passing has been punctuated
by a desire to achieve.
A path unfurls before her.
She has come to realise
her seeking days are at and end.
She now stands before the rising sun
an initiate to her people
Autism in Australia
Published February 04, 2009 @ 09:33AM PT
[Ed. Katharine is the second in our series of international guest posters. Thank you Katharine for blogging with us!]
There has been an increased focus on autism in Australia in recent years to the point of it becoming an federal election issue. Autism has been portrayed as a crisis, an epidemic, a puzzle, an over diagnosed condition, a struggle and a financial burden for families, a scientific curiosity as well as the root of special and extraordinary talents. Television debates have been held regarding the treatment of people with autism and national newspapers and magazines have run various features on autism. Culturally the portrayal of autism is robust and varied. Movies such as The Black Balloon and Max and Mary, bands such as The Vines, Rudely Interrupted and Donna and the Aspinauts, and an all Autistic theatre ensemble named Triple A have all made recent contributions to the cultural landscape of autism in Australia sparking controversy and debate and offering insight.
Beginning life with autism in Australia can be complex. Obtaining an ASD diagnosis varies from state to state as does eligibility for services dependant on an ASD diagnosis. The accepted standard seems to be diagnosis by a multidisciplinary team, using the DSM IV TR Criteria and standardised diagnostic tools. There are many pathways to diagnosis including via state run health services, some local not for profit Autism Associations and private practitioners. The Federal Government recently introduced rebates through the Medicare system for diagnosis of children under the age of 13 as well as treatment items for children up to the age of 15. The Government also recently introduced grants of $6,000 a year for two years to contribute to the costs of early intervention from multidisciplinary teams for each child under the age of seven with a Pervasive Developmental Disorder. Each of these services and systems has their own set of paperwork and/or registrations. Waiting times of up to 12 months are often experienced for families of children seeking a diagnosis. Adult diagnosis is a far more problematic area with little government support or expertise available.
Learning with autism in Australia has its own set of challenges. Access to education for people with ASD again varies from state to state with some states having autism schools and autism satellite classrooms and others having fully inclusive education policies that mainstream most students with ASD with varying degrees of success. The tertiary system has the National Regional Disability Liaison Officer Initiative through which students can develop Access Plans to ensure appropriate access to curriculum and environments through an Officer at each institution, providing you have the skills to access the Officer. Access to all education is covered by the Australian Disability Discrimination Act. However, despite legislation, the reality for many students is that it is hard to access appropriate education opportunities and recent studies show that over 90% of students with ASD are bullied at school, choice is limited and exclusion rates for students with ASD are high.
Living a full and rewarding life with autism in Australia is a dream shared by many. However the biggest challenge facing Australian Autistics is the lack of planning for the future. There is no system of support for young people to grow into, no approach to ensuring that the education, accommodation, employment, health and community needs of Autistic adolescents and adults are met. The major parent driven advocacy organisation Autism Asperger Advocacy Australia (A4) has previously been a loud voice for the needs of children and promoting the early intervention agenda and have had some of their needs met with the Federal Government’s initial package for children. For over 10 years there has also been a group of Australian Autistic adults surviving and supporting each other online. In 2004 they organised as grass roots advocacy group called AANSA and in 2008 became the Autistic Self Advocacy Network (ASAN) of Australia and are slowly moving adult issues into prominence. The challenge now is for self advocates to open up a dialogue with the government and key stakeholders and to demand a National Autism Plan with a view to the use of good science, extensive consultation and innovation in service design and delivery for life long services.
What Australia offers those with autism now has to be hope, hope that governments will keep listening, hope that communities will unite around this issue as they do with so many others, hope that Australia’s culture of ‘a fair go’ extends to all citizens, hope that Australia will join others on the international human rights stage and sign the optional protocol to the UN Convention on the Rights of People with Disabilities affording us real human rights protection. Hope that together we can come up with a plan that delivers real quality of life to all Autistic citizens.
I hope that we will find a cure - A cure for the desire to profit from people who live with autism, people, who should be afforded the best science, the best education, the best healthcare, and the best support simply because they have a right to it.
