Posts Tagged ‘Autism’

Differently Wired

Friday, November 8th, 2013

What does differently wired mean to someone who is that way. Some people may dismiss this term ‘differently wired’ as being twee or patronising. But it’s hard to explain things without having some kind of paradigm. So the paradigm is that due to genetics there are some hardwired differences in my brain. Is not speculative this is factual. These genetic differences affect my neurotransmitters which in turn affect my movements and my thinking. Some level of impairment is inescapable.

Throughout my life I have been accused of faking it. However there is a familial legacy that is undeniable. This legacy in a way means that I’ve grown up with a family with similar traits which has normalised these traits somewhat. You get to have people like you around you. It was also a fact that you have people around you who are not like you who become stressed about people like you. There was an early in life attempt to define what was indeed wrong with us. But as it was established that it was so rare there wasn’t really any comparator. Obviously in the 40 years of my life there have been advances in medicine and genetics that allow us to fully understand the different wiring. Well we understand it from a genetic and neurological perspective, but as an impairment it has curves on its curveballs. I see the portrait in my father, in my uncle and my cousins and my cousin’s children and in my brother. A Mishmash of odd movements and odd thinking styles that are incredibly unique but sometimes distressing. And I say distressing because it is distressing to compulsively pull your hair out or to be afraid of everyday objects. Whilst a lot of disability is located in the interactions between a person with the impairment and society, some things are just internally disabling. Chronic illness talk about spoon theory and say that spoons is only a concept that applies to those with chronic illness. Whether they are spoons, knives, forks or some other every day object as the metaphor it takes more to live when you’re differently wired.

More energy, and more processing time,more problem solving time and more endless looping of the brain. Talking about more me doesn’t mean POOR me. It means asking people to think about what it’s like to live differently wired. I know my differently wired Cousin has had to do things differently as a mother and then think about how she supports her differently wired children to be the best that they can be. And it is frustrating that people can’t recognise a rare disorder in all of its complexity and with all of its comorbidities. This is due to the fact that we just can’t accept diversity and everything must be homogenous. The homogeneity required by the school system for example has reached a point at which it has to be considered ludicrous. If you’re not of the homogenous ilk you have prove beyond reasonable doubt why and what your needs are before they can be met. In the meantime children are being squashed by our factory schools. I am so lucky that I’m not a victim of factory schooling although I met resistance in some factory schools. What is an outstanding factor in diversity and diverse people it is resilience and the matter of fact way people will just get up and do it all again.

These are
thoughts as they come

The last thing I Wanna talk about is the fact that we are moving towards a society where those with identifiable genetic impairment face greater discrimination through technology. If you know what gene causes the impairment what is the next step? Moreover are we morally ready for that step? At least 8 living members of my family might want to help you with that one.

Company@

Tuesday, April 13th, 2010

Written by Brett Williamson ABC 891 Adelaide

What started as a group of amateur actors with autism reciting scenes out of Red Dwarf has blossomed into a professional actors group.

Company@ offers actors with autism a chance to openly express their emotions and experiences of living with autism, to help them conquer some of the conditions most difficult development restrictions.

Katharine Annear, Autism SA’s senior consultant for adult services and a person with Asperger syndrome, is also the manager for Company@.

“We have 10 members of Company@ who are all people diagnosed with autism or Aspergers.”

As well as the performing staff having autism spectrum diagnoses, as least half of the production staff has been diagnosed with the condition.

“There’s a tendency for the theatre to be a bit didactic, in that it teaches people about the spectrum,” Katharine said.

Autism participants often utilise the stage to share experiences and interpretations of their condition with audience members, letting the crowd see life through the eyes of a person with autism.

“Some of the scenes can be quite confronting… but the way in which we work ensures that everybody involved owns the work, so they are not in a vulnerable position, they are in a powerful position because they are telling their own stories.”

As part of sharing their experiences, the theatre group hope to give an insight into the condition, and will soon produce shows for highschool audiences to give students an understanding of the development disability when it tends to become more prevalent.

“People’s differences become very apparent during adolescence because it is such a time of evolution for human beings, and if you are different, you stand out.

“If you are an individual in a way that is not socially acceptable, then that has ramifications and it can lead to extreme anxiety and depression.”

Audience responses to the show have been wide and varied with the response to one show the performed at the Asia-Pacific Autism conference gaining a remarkable result.

The performance of Framed Out detailed bullying scenes and revealed how a person with autism feels ostracised from the social scene.

“People experienced joy in terms of seeing people express themselves, people openly sobbed because it is very confronting, and finally we got a standing ovation from an audience 800.

“Someone came up to us, who is a professional in the field, and said ‘I learned more in your 20 minute performance about the inside experience, the internal experience of the autism spectrum than I had in years of being a professional’.”

Through providing actors with autism a stage to express and direct their feelings, it also helps to reverse some of the most debilitating parts of the condition, a person’s communication and social skills.

“To see them use acting as a tool to develop those areas and become more self-assured, more resilient, more able to express themselves, more able to connect with each other and with the world around them, I think that’s phenomenal.”

In parallel with the professional actors group, several amateur groups have been created to use the same methods to develop and progress others with autism.

With a particular passion for science fiction and British humour, actors can be found reciting Red Dwarf, Doctor Who and The Goon Show lines.

“The British sensibility and humour is a very Aspergerish kind of sensibility.”

Through the usage of therapy through theatre, Autism SA has managed to build confidence in many people with autism, boosting self confidence and social skills and offering an outlet for participants.

“People on the spectrum are resilient.

“They start off on the back foot, they have a condition that affects them globally, and they do tend to be resilient and we need to tap in to that and help them recognise the skills that they do have.”

Company@ are planning an extended version of Framed Out for a public performance in June.

Details on Company@ and the theatre services offered can be found at the Autism SA website.

Autism SA is a not-for-profit organisation based in Adelaide, South Australia.

Disability Studies Quarterly

Tuesday, February 23rd, 2010

I have just discovered the latest Disability Studies Quarterly and I’m overjoyed! I feel like ‘autism’ is coming of age within disability.  It is fitting that there are articles by both Jim Sinclair and Ari Ne’eman. Dare I say Father of the movement and one of its most prominent sons. I have a feeling that a lot of care an attention has gone into the all of the sections, the peer reviewed, the cultural commentary, the roundtables and the smaller offerings – creative works and book and film reviews. Tito Rajarshi Mukhopadhyay and his exquisite metaphor and highly appreciable humor resonate with me. I am yet to read all of the work and I remain excited at the possibility of doing so and savoring the offerings as some are clearly such a departure from the medicalised research literature I am required to read as part of my profession. As an an Autistic person who is a Disability Studies graduate I feel this long overdue treatment of autism will finally allow further focus on discourse that is not routed in the medical paradigm or the battle seat of the behavioural science, pharmaco science or quackery realms.

Tired Yet?

Saturday, December 26th, 2009

I began to get tired toward the end of this year and was wondering how I would keep going under the pressure of everyday life. My mind is such that I am driven to do and to achieve not only for myself but on behalf of others. I have had time to rest and reflect and realise that it will always be my lot to be the way I am!!

2009 has seen many changes and machinations in the autism self-advocacy world and what I am seeing is a third-wave of advocates who a striving for a more rights based recognition of autism and autistic people. I am tired and as much as I’ll keep soldiering on, I am grateful for the new blood even if there is a bull at a gate mentality at times.

I remember being a younger activist  – not just taking a stand on autism and disability but on refugee issues, global economics, war, unemployment, youth issues, gay rights and more. I approached every issue with fervour and could be found at the front of picket lines and travelling from state to state to set up camp on a new issue. I was an arts student with time to spend on developing concepts, campaigns and time to dream about a better world. I was not only dreaming I was taking action and I believed wholeheartedly that every little bit counted. I think that some of the more seasoned activists around me would have looked at me and my fellow newbies with a mixture of amusement and knowing because they had been there done that – so to speak.

Sometimes now when I read about the actions of the new wave of self-advocates and activists in autism I have a mixture of the feelings that I suppose those elders had when I was younger!

There are some of us who have been there and done that in a lot of ways and yet there is still so much to be done. We do have a legacy which is a luxury and not a luxury to be taken for granted.

Now is a good time to reflect on some of that legacy and the things that inspire me!! (some links are to old sites)

Autism Network International Founders (1992) Jim Sinclair , Donna Williams and Kathy Lissner Grant. History here IMPORTANT READING

Jim Sinclair’s Don’t Mourn for Us

Martijn Dekker and InLv and IRC channel #asperger

Tony Langdon

Oops… Wrong Planet Syndrome (1995 – 2005) Archives here

Aspergia.com (no content available – you had to be there!)

These are a snipet of my introduction to the autism world many years ago when resources seemed sparse. Today there  is a veritible flood of information, options, opinions, resources, forums, chat rooms and the like. There are many activists and advocates awakening to the cause and looking toward the horizon with a sense of importance, boundless energy to give and rights to fight for.

I am a little bit tired but not nearly as tired as some who went before me – all that I wish for is that we honour the legacy of a movement. Spend some time looking back before you run foward.

Emergence: Leadership and the Autism Spectrum

Wednesday, August 5th, 2009

Autism and Asperger syndrome are developmental disabilities often referred to as Autism Spectrum Disorders (ASD). For many self advocates on the spectrum the term ‘Autistic’ is the term chosen for self reference. Autism is historically characterised as a severe disability that has attracted many stereotypes and misunderstandings. There are said to be 1/160 Australians with an ASD equating to an enormous population with a diverse range of difficulties and needs and equally as diverse range of skills, talents and accomplishments. Much national media attention and political attention has been payed to autism of late, however there seems to be a distinct lack of Autistic voice amongst the national conversation occurring. With rhetoric thrown around such as epidemic, tragedy, emergency, criminals, burdens, problems… how does an Autistic voice emerge?
For an Autistic voice to emerge the first thing that an Autistic person must do is recover, not from their autism but from the disabling environment they are expected to develop in. They then must set about in the task of educating themselves in the social ways of the world.
The Autistic person works from a different platform that does not necessarily prioritise social information. To operate in the social world requires extensive study of human beings and human interactions and the application of intricate sets of maps a rules derived from that study. The extent of understanding derived from this intensive study can well surpass the casual observations of others. Another important quality in developing a voice is resilience. Opportunities for the Autistic person to practice resilience are abundant, from early days in the school yard to the halls of larger institutions and the complexity of adult life. Over 90% of people with an ASD experience bullying within their lifetime and it is only through sheer resilience that they survive. Although socially impaired the Autistic person may serve as a barometer for social change as they quite often stand off to one side observing the main event and reacting noticeably to even the most subtle change; like the frog is to the environment, the Autistic person is to society.
Verbal communication for Autistic people can range from being not present to being superior on standardised tests, none the less every Autistic person has something to say and as a leader I am extremely cognisant of this fact. To be a leader requires a certain amount of social sophistication, enigma and a lot of hard work, it has been argued that Autistic people are incapable of all of these things. As an Autistic person and a leader I would argue that some of us are in a unique position to become leaders and can offer a unique set of skills to any leadership forum. I myself have served on nine Boards and Steering Committees holding positions such as Consumer Representative, Vice Chairperson, Chairperson and Convener. I currently Co-Convene the Autistic Self Advocacy Network (ASAN) of Australia an affiliate of ASAN in the United States.
I am also aware that leaders have the responsibility to foster young leaders. It is the aim of ASAN to offer leadership opportunities to all Autistic people who wish to explore them, to involve Autistic people in self advocacy at a personal, local and national level.
I recently had the opportunity to attend the 4th International Women’s Institute on Leadership and Disability hosted by Mobility International in Oregon, USA. I was one of 25 women with a disability to attend and the only Autistic woman. This cross disability program was an invaluable leadership experience that also allowed me to asses the global position of Autistic people in leadership. I can point to a handful of leaders around the world, some pioneers who have been on the scene for years and some new faces, but as a movement we are young and emerging.
We have a lot to learn and could do with a little support but most importantly we want to be taken seriously at a national level. We are still continuously marginalised in conversations about us. As the old adage goes ‘Nothing about us without us’. We are here; we do have many voices and strong emerging leaders.

On Getting Better

Sunday, May 10th, 2009

Also posted on Autism @ Change.org
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) – 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?

Journey

Monday, August 11th, 2008

Tomorrow I head to WILD08. Yesterday I was spending time with family and it was interesting to see things through their eyes. My Nanna is proud – she watched the you tube video of the previous WILD – I don’t know how much she could see as she now has Macular Degeneration. She asked me if I was the only person with autism going and I said I was and she said she thought that was big responsibility. I said I was worried about the hugging – my Aunty and my Nanna noted that there was a lot of hugging on the You Tube Video. My mother has entered the world of web 2.0 and the internet at large – she now has a facebook, a blog and a wiki. I am sure she will catch up with this blog at some stage. Jeremy (my brother, also Autistic) was over from Melbourne he left early with my dad – seemed agitated, leaving is his way of coping i guess.

My step sister Amber brought Caramello Koalas for me to take overseas, good thinking!! Cadbury chocolate in a Koala shape – very Aussie. I have been trying to wrack my brain as to what to take or what people expect from an autistic woman from Australia. I have my mind – that is my biggest gift!! I will gift them some of my writing and photos. The world from my perspective.

Mac in an IBM world?

Saturday, August 9th, 2008

The Apple Mac in an IBM world…… not a new concept……… just my take on it.

 

Imagine you work in a company that runs networked IBM computers and you have the only computer with a different operating system such as Apple or Linux. What does this mean for you? It may mean every time you get a file from your colleagues and try to open it is not formatted properly or it is unreadable. Imagine that many of these files were vital to your operations and as a result of not being able to read them or only receiving part of them you were not able to fulfill your position in the company. Then imagine that your computer has trouble operating properly even as a stand alone unit. You have a number of programs that are supposed to run simultaneously but when you try to do that programs keep shutting down. You also have databases in which information is stored but you can only access this information one database at a time so it is difficult to cross reference or combine different types of information.

Autism is somewhat like this, the autistic brain is like a different operating system that doesn’t process information in the same ways that a typical brain processes information. The neurotypical (normal) brain is like the IBM system and the Autistic like the Apple or Linux. They are both computers but because of their differences they don’t share all of the same language. What is particularly difficult for the autistic brain is the processing and combining all of the social parts of communication, particularly its non verbal components. This is because like the computer described earlier the autistic brain has difficulty running two or more programs at once so whilst a person may be able to pay attention to the sound of someone’s voice they do not have the capacity to simultaneously observe facial expression or body language or conversely by paying attention to the visual details of a person’s mouth they miss the content of the speech. Sometimes the brain is unsure about which information to process with its limited resources so it shuts down all of its “programs” leaving the person confused and anxious and unable to communicate.  And like the computer I describe with its isolated databases, being unable to cross reference information also means that people may have problem combining different types of information such as fact and feeling, self with other, and thought with action.

For the person with autism an effective education is like a software upgrade for the computer described, it allows people to make better sense of incoming information, helps improve simultaneous information processing. Effective educators present information in a format that can be understood by the person with autism typically this is a visual format ranging from pictures to words or combinations of both. People with autism prefer routines so that they can predict what types of information they will be required to process and when and so that they can prepare themselves for this interaction.

What this translates to in daily life is somewhat of an uneven profile of talents and difficulties to be explored by the autistic and his or her supporters.

Person First Language?

Wednesday, August 6th, 2008

I was recently asked why I choose to use the word Autistic – this is how I replied to my friend:

The decision to use the phrase Autistic Adults is a deliberate and political one – whilst it can be acknowledge that person first language has had an impact upon the way people who experience disability are viewed it has also performed the role (in people’s minds) of extracting that which can not be extracted from a person – their ‘condition’ or ‘impairment’. I the case of ASD, there are structural differences in the brain which make a person autistic – that person is not any more ‘with’ their autism than the are ‘with’ their gender or race. We do not say ‘a person with femaleness’ a person with blackness’ and indeed we do not say ‘ a person with homosexuality’ each of these would imply that somehow because you are ‘with’ then you could be ‘without’ ie simply have it taken away or choose not to live with it.

Autism the condition is located within the person therefore that person has every right to call themselves Autistic and refer to Autistic Community. Disability is located within society so it is reasonable to say a person lives ‘with’ disability because theoretically it is something that can be adjusted for or ‘taken away’. Autism does not equal disability, disability is what someone experences when they interact with a society that can not reciprocate or accomodate them.

You can think of the use of the word Autistic as a reclaimation of language, language that has been expertly skewed and diluted so much so that people forget that there are Autistic Adults who have a unique set of support needs equally as deserving but somewhat different from the rest of the population experiencing disability.

You will notice that as with the capital “D” in Deaf Community a capital A is used in Autistic.

Some of this debate lies with the wider debates around the sociology of disability but much of this act is firmly pitched against the damning rhetoric that has people with autism referred to a soulless, tragic, lost, kidnapped, empty shells, low functioning etc

To be Autistic is not to be bad, it is not to be good either – it is just inherently there and has to be noticed if there is going to be any movement in terms of real assistance for Autistic people.

See Jim Sinclair http://web.syr.edu/~jisincla/person_first.htm
See criticism of Person First Language http://en.wikipedia.org/wiki/Person-first_terminology


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