Fixing a broken system needs to happen now!

We live in a society which I feel largely excludes persons with disabilities from interacting within the community.  By this I mean, if you have a mobility impairment, you have to find your own way to a destination, deal with often the lack of support and help associated with it and society's attitude.  Also you not bother to go to a venue as it may lack wheelchair access etc

When I worked part time for CODA (Carers of Disabled Adults) one of my duties was to organise events for persons with disabilities and their carers to attend.  This may have involved going to a soccer game, or to a theatre etc.  Very few organisations put up their hands to help and the ones that were approached seemed to show very little or no interest.  In relation to Autism, we live in a community which wants to label and furthermore lack the time necessary to accommodate those who are different.  Bill Shorten spoke about the National Disability Scheme in Australia in 2009 http://www.youtube.com/watch?v=WYkJ80WB2LY  So far Mr Shorten has been the only person to have mentioned disability in the community, the struggles those of us with a disability confront and the need to do something about this.

With the election of the Campbell Newman as Queensland Premier, one of the pledges is to look into disability and also hopefully the implementation of the National Disability Insurance Scheme.  Wouldn't it be a better place if people were able to include more so than exclude persons with disabilities?  For people with Autism we often confront ignorance in our everyday lives.  We can be blamed in the way we think, react and have difficulty in being able to communicate with others. I remember once a woman saying to me 'it's amazing you get out'.  I find this comment insulting because I felt I was treated like an invalid.  I find in society that I am largely ignored, distanced and sometimes criticised for being the way I am and think.  It is immensely difficult when you try and also sugar coat how you really feel in some situations.  People can just be so insensitive or unaware that you know that being sometimes upfront is not going to resolve or change a situation.

Australia has a broken disability system and it is badly broken.  I personally feel the Gillard Government is not doing enough about disability and I am also unaware of what commitment the Australian Opposition has to disability also.  We live sadly in a society where there is little or no community and often the only hope a person with a disability has is to join a church or a similar organisation.  As I get older myself I am not sure of my future.  What will happen after my parents die?  Will I ever find a girlfriend or get married?  Will I end up in an institution?  Some of these questions plague my mind.  Nothing just seems to be available at the moment.

Disability should not be used for political point scoring nor should it be neglected or put on the back burner.  For too long persons with disabilities have been on the outer in society.  Look at Brisbane where I live and you will find all disability groups still on the outer. Lack of public transport facilities and other places which make accommodation or allowances.  It would be nice to live in a world where persons with disabilities could co-exist with other people.  For instance if you have Asperger Syndrome that people your age could say 'yeah I know Garry he's a little different to others but he has an interest in orchids and history and seems a good guy' whereas instead I find I am largely treated like a leper and people seem unaware of how to deal with neuro diversity.  I can give other examples of other persons with Autism I know but I really need to get my message across to readers viewing this post.

Going out into the community is a monumental effort.  Trying to hold down a job is also. At times I find myself at odds with people.  Yesterday for instance, I had a library patron approach me with a question but being held back in how much I can actually help in the job and being cut down in not being able to go beyond with what I am doing, I felt disinterested in assisting this client any further.  I also feel that people think I am whinging when I have suggested on numerous occasions that the library internal stairwell is an Occupational Workplace Health and Safety Hazard and causes me sensory grief.  I just wish people could understand me better and for me to not be treated like some kind of deviant.  When the patron approached me also yesterday, a more senior person was in close proximity and seemed 'annoyed' at how little I was helping the patron.  I felt quite frankly that if I were approached by the staff member that I would say 'well working in UQ (University of Queensland) I am aware that I am largely to do manual handling tasks only and to exercise initiative is something that I should not bother to do as it wont help me anyway. 

It angers me immensely the way that governments want to simply confine persons with disabilities especially Autism onto welfare payments.  Most want to work but are fearful of applying for jobs as they know the interview process and selection criteria work against them not to mention the fear of bullying and the possibility of getting sacked.  Such issues are a reality and as I write this post I know of an adult on the Autism Spectrum from across the Tasman in New Zealand who is living in Australia, and is confronting bullying in their work environment and possibility unfair dismissal.  Such issues can no longer be ignored and I only hope that the new government in Queensland can start to intervene and provide help.  As I write this post I am also aware of others who may choose to disagree with what I write and brand me a trouble maker but if I do not stand up for persons with Autism then what hope do we have?  A lot of work needs to be done.  I am also trying my hardest to make software testing in Australia a reality.

Please write to your politicians and pressure the Australian Government to do something about disability and the National Insurance Scheme.  Urgent action needs to happen. Also work environments which are unsafe with potential Occupational Workplace Health and Safety Issues need urgent action.  A person should not be exposed to hazards within a workplace and psychological hardships.

PLEASE HELP OUT TO MAKE A BROKEN SYSTEM BECOME ONE THAT NEEDS TO BE FIXED FAST!

Connecting Aspies to the community

Last Saturday Queensland had a change of government.  Hopefully this will mean a great deal many things will happen.  Disability and Autism being just some of the things which need attention.   

One of the concerns I have is that the disability system in Australia is broken.  I have been in touch with Kenmore Baptist Church on the western side of Brisbane, and yesterday I attended the Church in the Park event.  Here I met with a few people around my age and spoke with them about how there is need for more community and support for persons with disabilities.  I found it reassuring that one of them knew about Autism having a friend who is 21 on the Autism Spectrum.  I spoke about the need to remove the label and to try and obtain inclusion of persons on the Autism Spectrum as being included and less so labelled or carrying a stigma. In other words, I suggested that people accept and embrace Autism and its diversity more so than avoid or ignore it.  Unfortunately a lot more work needs to be done as people seem reluctant and fearful still to embrace Autism.  I also suggested the possiblity at some future stage of talking about my experiences but of course if and when the congregation may be interested.  For instance Rocks Riverside Park at Jindalee could be one place where an Autism Event could happen similar to the Stadium of Light in the United Kingdom which saw many people turn up to listen. 

With the disability system being broken in Australia, there needs to be support from sectors and areas of the community to assist in the meantime.  Churches may be one possible area to provide support.  I am finding as I get older that social challenges are becoming more difficult.  At times I find just walking into crowds of people can be debilitating as anxiety tends to make me freeze up and function with more difficulty.  I also feel frustrated that I am under performing in employment because I am not able to use any of my intelligence or have it used in employment. It is not so much the fault of the employer but the system in which it operates as the may tiers in job classification levels and focus specifically on manual handling makes things difficult.

Next Tuesday night, I will be attending a meeting of the Australia and New Zealand Software Testing Board.  I would like to find out what is involved and required to get the ball rolling here.  I am disappointed by being held back more so than utilized to get the process rolling and to start employing adults as software testers.  I also will be speaking at Autism Focus where I last spoke on Friday about my experiences of having Asperger Syndrome. 

It is encouraging to see more happening but we still have a long way to go.  Over the coming months I intend to see what support the new Queensland Government will have on offer in supporting people with Autism and Disabilities etc.  Anyhow please wait more updates as they come to hand. 

What exactly is happiness?

I am asked ocassionally 'don't you want to be happy?" I ask myself "hrmm how exactly do you define happiness?"  In all honesty I would be happy if people started to understand, accept and embrace Autism.  I would like to see persons, families and friends who are affected by Autism better understood within the community.  People saying "Oh yes I know about Autism, you must have you own abiliites and challenges?"  Instead I hear about how happiness is defined within the confines of what a Non Autistic Person thinks as happiness.  Money does not provide happiness nor does luxury.  Happiness if I understand the word correctly is a euphoric feeling relating to a certain event in a person's life.

In all honesty and I am going to be literal as I am, I find a great period of my life is trying to come to terms with what I know and exists around me.  I also know that either something good happens or instead I just survive as best I can.   I know there are others less fortunate than I am, but across the Autism Spectrum there are a lot of very frustrated and unhappy people.  This is a reality because services, support and understanding are not provided to them.  Money is not everything and it does not buy you happiness.  To have friends that embrace Autism and know you have it makes the world of difference more so than rejection and believe me I am not being hard on myself and I am speaking the truth the best way I know how.

Like other people in Australia I endured the floods in January last year.  The situation was traumatic but the thing I could not understand is why people did not talk about it and why no action was undertaken to reassure people that Brisbane would be flood proofed as best as possible?  Whenever you encounter an event which was devasting like it was last year, wouldn't it be a viable option to start fast tracking immediately measures to reassure people that should such a diaster occur again that they know they are safe?  Instead in all honesty I have seen very little done and a flood report handed down just days before an election.

Everytime I hear rain I feel on edge and wonder 'I hope it does not flood again'.  During the flood the whole experience was traumatic but it did provide the community with a spirit of looking after each other.  However, everything returned to 'normal'. People returned to their homes, hid behind their fences and again do not speak to each other.  It is sad when after such a traumatic event that people were not provided with a sense of reassurance. I even wrote to the Queensland Premier to suggest to her that perhaps a carnival or circus could be put on to take people's minds away from the pain of being flooded. In all fairness the Premier did respond with "I will forward your idea on" but nothing ever happened.  The weather at the moment is weird.  Here we are in Brisbane and it is still humid with this rain never going away.  In fact I have not seen one fine day in over 4 months.  The rain just does not stop and it feels like a form of punishment.  How many people were counselled after the flood I wonder to myself?  

I don't feel happy because people do not understand me.  It is like I exist in a shield or bubble and people just do not get it.  I find that every attempt that I make now with mostly exhaustion just does not work.  I ask would I be better off somewhere else?   However the many conventions and obstacles just make the thought impossible.  At times you feel like a leper in a lepar colony.  I hate the weather in Queensland now after the floods.  I just am on edge everytime it rains.  What if it floods again and what reassurance is there in case of precautions? Is anyone listening?

There is no such thing is Autum in Queensland and it looks like the rain will be relentless.  You hear it on your roof and it never stops and you have fear in your mind that you just can't escape it and what will it do?! Australia is such a harsh country in all honesty and the people who arrived here need to be admired to put up with its harshness.  What if it floods again?   Will the Queensland Government be returned on the back of  a natural diaster such thoughts come into your mind.  I hate rain and when I hear it and I feel this constant humidity I wonder if this big island quarry will ever experience cooler weather?   It just seems that Brisbane now has a wet and a dry season and God only knows how much more of this rain we have to experience here?  It just seems to come back again and again and does not stop.  Also to top things off as hell can you imagine the thought of a cyclone forming off the coast of Fraser Island.  Australia is a rough country and it is no wonder its people are rough with the droughts and flooding rains you get here.  The humidity is also intolerable as it is during the wet months. 

Catching up with Damian and learning more duties

Yesterday I caught up with Damian Santomauro who is in his second year of his PhD on the Autism Spectrum in young adults.  If you are not aware of Damian, he is an adult who has Asperger Syndrome and the work he is doing is very important as he is focusing his study more on young adults.  As the University of Queensland is a large place, it was hard for both Damian and myself to find a comfortable place to talk with all the crowds on campus.  We discussed how it can be difficult for Aspies to be understood by Non Autistic people and whether or not attitudes will change.  We also are cyncial like Aspies are of politicians.  With a change of government looking obvious in Queensland, we want to kow as well as other adults if support will be provided for adults on teh Autism Spectrum? 

On Friday 23rd March 2012 I will be attending a conference in the afternoon hosted by Autism Focus
The conference provides the following information:

AUTISM/ASPERGER SYNDROME AND SUCCESS IN THE WORKPLACE;
by Marilyn Patterson, for AUTISM FOCUS
                                    March 23rd, Brisbane International Resort

This unique program investigates in detail the difficulties persons with Autism or Asperger Syndrome (ASD) face in preparing for, obtaining and keeping paid or voluntary work. Content stems from Marilyn’s extensive background in the field of ASD education, and a compilation of current research and successful practice by others working with clients in the workplace. Throughout the day a host of practical, time proven and easy to apply strategies are offered to address:
? job selection, case conferencing and interview preparation
? the unique talents and obstacles a person with ASD can bring to the workplace and strategies to enhance success
? stress and anger management
? relationship issues and ‘getting on with others’ in the workplace
This program suits employment agencies, educators, work experience coordinators, community support agencies, families, carers, persons with ASD and others interested in the area.
Full registration and costing details are included in the attached flyer – enquiries are welcome via email or the phone contacts below.
Please feel free to pass this information on to others who may be interested
kind regards,
The AUTISM FOCUS TEAM

AUTISM FOCUS
ABN:18 754 520 841

MARILYN PATTERSON; KEVIN HURFORD
0407 08 6661
07 3408 6661
www.autismfocus.com.au
mpa95526@bigpond.net.au

I hope to also speak briefly at the conference and take a long some books also.  My book can be obtained on my website www.garryburge.com 

I am now also working in the Dorothy Hill Physics, Sciences and Engineering Library on a Thursday and Friday.  This is a refreshing change after having waited for almost 6 years to be rotated to another library branch.  I am responsible for opening the library of a morning, processing the mail and a few other duties besides shelving.  While in the Social Sciences Library, I find the stairwell overwhelming at times with student traffic flow.  I have asked if I can use the fire stairwell as this is quieter and away from noise which causes me sensory issues.  I am able to do this which helps.  Apart from this, I am also in touch with www.autismworks.co.uk and have found out from Chris Mitchell that their location has moved.  They are now on the same street but a bit further down in new premises.  I just hope things are looking good for Autism Works.   

Please stay tuned for further updates. 

Aspergers Syndrome and work

As an Aspie learning new skills in a workplace is often a challenge.  Not only does it require vast amounts of mental energy but also I find myself asking a lot of questions.  Learning new duties is almost like clockwork.  When doors need to be opened to let patrons into a library for instance. I literally find myself obsessing about whether I should let patrons in 1 min early or 1 minute late.  It can become literally an overkill when I overthink.  I constantly find myself checking for errors in what I do and added to this, I have to try and understand responses and communication from other work colleagues.

I enjoy the change I am now doing within my current role.  Not only am I learning new skills which are very few, but I realise how bad anxiety can be if I am asked to do too many things within a full day. When I worked several years ago and pushed very hard to work, I found myself sleepy and at times all I wanted to do was to lie down somewhere as my mental energy was just flushed.  In work, I find myself slowing down when expected to do multi tasking and I am trying to make sense of the work constraints around me.  Today I had a student ask me about a technical matter concerning engineering.  It is interesting to spot the undiagnosed Aspies in the Physics, Sciences and Engineering Library.  I have come face to face with some and it is almost with the slip of the tongue to say 'you're Aspie too!".  I thought today as I worked in the library that I wonder what it would be like to do a brain scan of all Maths Students compared to Arts Students to measure different cognitive functioning in their brains.  I also thought to myself 'why is it that I turn up to things way too early'.  To control anxiety I tend to start much earlier than expected when at work.  I hate being late and being late creates panic and shutdown for me.

As an Aspie, the work environment can be totally perplexing and overwhelming.  It is not always easy or more so impossible for me to do the simple duty of checking out books to patrons.  I find myself obsessing about whether I am doing things properly and when there is pressure placed on me, my mind and body try to shutdown.  I just don't handle stress that well at all.  When I was in the library today, I wondered what students thought of books. Do they read them?  Is what is found in them of interest considering it all relates to physics, maths etc.  There is a different writing style between prose and factual writing.  Perhaps more Aspies in Engineering because writing is more factual and an Aspie may have a hard time reading a suspence novel when literal interpretation implied.  Perhaps an Aspie can guess who the culprit is before the book has even ended?

It is interesting that Aspies get waves of cognitive energy.  Work environments unfortunately seem unable to accommodate waves of cognitive energy because a work environment is structured around a social context. More words and body language are conveyed and received than manual work perhaps.  To do manual work involves a means of getting around the social chit chat and Aspies are not great at it.  Have you wondered why there are more Aspies on Facebook chat and on computers than other demographics?  A simple thought to leave with you?  How can a work environment be structured to accommodate an Aspie?  Are current work environments the problem with the long held position of working 9-5.  Dolly Parton best sums it up in her song.