Marketing and raising awareness

As an adult on the Autism Spectrum marketing and raising awareness of the Autism Spectrum with my own experiences as an adult and also for other adults on the Autism Spectrum attracts a different kind of marketing approach.  I find it very difficult and virtually impossible to get any good or positive news stories through the media.  I have had on ocassions to contact newspapers and television programs to correct and rectify stories which just have a negative message to them.  When I have tried to contact media outlets, I have received some positive responses but not as many as I would intend.

The biggest problem it seems is getting the direct message out there about adults on the Autism Spectrum.  As I have repeatedly mentioned is the high unemployment statistics in the Autism adult population and the alarming mental health and social isolation issues.  It seems that no matter how hard I push to get the message out there the more difficult it seems for media outlets to actually listen.  Quite simply I want to see more positive stories.  There is a lot of work happening in the background by myself and others to overcome some of the challenges and difficulties that affect persons on the Autism Spectrum directly.  There are also the positive stories.  Adults on the Autism Spectrum working in software testing, some successfully but few in employment, some with extra-ordinary abilities and it just seems that the Australian media just show no interest.  I also was disappointed by media personality Karl Stefanovic showing no interest in the book I just wrote.

I am not out for publicity or fame.  To be honest the very concept would just stress me.  What I would like to see is greater tolerance, understanding and awareness.  Added to this I want to see  positive stories which help the wider community to understand the existence of the Autism Spectrum rather than more so in some instances turning a blind eye to it.  I work very hard to raise awareness of the Autism Spectrum in adults.  I have some adults contact me asking me to not give up and that I am helping them.  I also am connecting more adults from around the globe and this is a positive.

Since this blog has existed it has received close to 20 000 hits within a very short period.  Although not a large number it demonstrates that people are prepared to read and  hopefully become better informed.  Over the coming months I intend to raise more awarness and speak at more events.  The book I have written is doing well also and in times it will reach more libraries.  For now like always I would encourage you to follow the work I do and even follow my twitter page by visiting GarryBurge on Twitter.  You're support really makes a difference! 

The book orders still keep coming in dribs and drabs

This afternoon I received 4 more purchase orders for "I Want To Work An Asperger Story".  Garry Burge's Book Dr Tony Attwood Foreword to James Bennett Book Suppliers.  As demand is increasing somewhat, I have had to order more books.  James Bennett Book Suppliers http://www.bennett.com.au/ supplies books to both Australian and New Zealand libraries and so far I have completed approximately 10 book orders.  This has been very encouraging.

Some adults on the Autism Spectrum have also purchased the book and I am currently in communication with one friend who is now reading the book.  So the book is getting out there.  I also contacted the University of New England Library http://www.une.edu.au/library/ and asked them quite directly why the book has still not been added to their collection since it was donated in August this year.  Having rung a few times now it seems quite concerning as to what happened to the book.  I now do not donate books but rather request that libraries purchase them through James Bennett Book Suppliers. I hope that James Bennett will pay me for the books also as they said it is a 30 day turn around to pay invoices.

This afternoon I managed to post 4 books off to James Bennett Suppliers and I am starting to prepare for my upcoming conference at Rotary Brisbane Planetarium http://www.rotarybrisbaneplanetarium.net/  This talk I tend to discuss my own experiences called "Navigating the World As An Adult With Asperger Syndrome".  I will be speaking on Thursday 13th October and hopefully my presentation will provide greater awareness and understanding.  It will also provide me with the opportunity to mention some of the development in terms of employing adults on the Autism Spectrum.  More importantly I hope to be able to sell more books.

Self publishing a book with only 84 pages is in itself no easy task.  Trying to find publishers and being knocked back by them has lead me to adopt an unconventional means of allowing it to reach a wider audience.  Also the sheer hard work in having to market and promote the book yourself is no easy task.  I am proud of my achievements despite the difficulties.  When you write a book the world is an a vast vacuum of space because there are always people that may be interested in reading the book but it is just a matter of them obtaining a copy or awareness of the book existing.  I am not sure if I will write another book anytime soon but writing a book does provide a start to a future foundation of awareness.

This is actually the 5th book run and luckily for me the self publishers that I use has been both flexible and supportive.  Schuurs Publishers has assisted greatly with this and I also had to wait some time for Dr Attwood to write the Foreword to the book.  As time passes, I will gradually be able to get more books out there and hopefully some more books overseas as well.

Please stay tuned to my website for update www.garryburge.com

Garry Burge

Raising awareness of the Autism Spectrum and the challenges

Recently I put together a newsletter which I sent to Dr Tony Attwood and Asperger Services Australia.  The idea of the letter was a means of communication which could be sent to various organisations, politicans and other sources of information within the wider community.  I did receive some feedback from Asperger Services Australia as well as some encouragement.  I know Dr Tony Attwood is busy also and not always able to respond to the many different and many emails he receives.

 In a recent conversation I had with the Disability Advisor to Senator Jan McLucas it was made apparent to me the difficulities in providing awareness of the Autism Spectrum to the wider community.  As there are many distractions and other important priorities, the Autism Spectrum unfortunately may not always be able to get the attention it so badly requires.  I also find that there are pockets of people both in Australia and abroad that are aware  of the Autism Spectrum which provides some encouragement.  Unfortunately it seems that the Australian mass media have no interest and more sadly often stories are told and reported in a negative way.  So things do need to change.

My own advocacy work often is both challenging and sometimes frustrationing.  There are just some elements and sectors of the community that simply seem to have no interest and again sadly provide no support.  I just have to work around these challenges to find a way forward.  Unfortunately it is difficult to make a career out of raising awareness of the Autism Spectrum and it is also frustrating when the current labour market makes no real adjustments in delivering and employing adults on the Autism Spectrum.  Fortunately there are some positive developments on the software testing front and I am still awaiting for Australia to come on board with this.  I am following the work of Autism Wor ks very closely www.autismworks.co.uk

The work I do in raising awareness of the Autism Spectrum receives no funding and support from the government is virtually non limited nor existant.  Over the coming months I hope things will change.  We can only hope?  If anyone is interested in receiving my newsletter please do not hesitate to contact me via my website wwww.garryburge.com

Regards
Garry Burge

Garry Burge Asperger Syndrome & Autism Advocacy
www.garryburge.com

Does the future become harder?

George Bernhard Shaw's famous quote "You see things"and say, 'Why?'But I dream things that never were; and I say, "Why not?" How do you interpret this exactly in your own life?  Many of us go through life never really knowing who we are.  Some of us become successful in what we do and others of us just struggle to find who we are as people.  At the death of Martin Luther King a man I admire in history, Robert Fitzgerald Kennedy the brother of President John Fitzgerald Kennedy used Shaw's famous quote to describe the stance and the dedication that King used when he stood up for civil rights in the United States.  

Many of us journey through life largely unaware of how other people react or even listen to whatever message it is which we wish to say.  Sometimes sadly the hardwork, commitment and dedication expressed by those passionate about a cause just tend to fall in the wayside or face stiff resistance when really all that is required is just an open mind and an understanding heart.  

I cannot understand why there is so much negativity in the world and on ocassion me being asked if I am depressed.  Whenever I turn on the television all I ever hear and see is tragedy, doom, gloom and endless stories that seem to have no happy story to them.  So many people seem serious also.  You have to be so careful now if you make a joke with someone so as you don't offend them. Also is there not good and evil on earth with the need for more goodness to be revived?  All it takes is just a smile, a warm and friendly attitude and an ear to listen.  It just seems that all the factors are just about difficult to obtain.  

As we journey through life things do become harder and the world is not always black and white which is the way I see it as well as a preference for routine.  I find and look for patterns in behavoiurs and events and try and rely on predictability but sadly this is just not the way of life.  It seems that life is a lottery at times and you just have to hope that you have lived a fulfilling life when your number is called.  I don't see myself as depressed but more so a failure in understanding the world around me.  People just don't seem to get it if you think and act differently than they do you just seem to be misunderstood.  As I get older I find life becomes harder.  I find that my thinking is becoming more black and white.  The grey areas seem harder to define and life although I kind of prefer it to be a routine is ever changeable.  Circumstances do change in life and people come and go and also move on.   

It seems in the world today that people are afraid of commitment of any kind. Whether this commitment is friendship or in relationships, people are just afraid that giving commitment will take up valuable time.  Opportunities seem endless but life is also very short.  There is only so much we can do in order to find satisfaction in life. How many people actually take the time to shirk worry, fear and actions and take the time to help others in need?  On my way to work this morning a motorist insisted on beeping the horn at me at a local roundabout as I waited for the car to my right.  I felt like saying 'buddy what exactly is your problem?" when all he needed to do was just wait patiently and safely for the traffic situation to be sorted out?  People just seem so impatient nowadays and invest little time for others.  The world I believe is going through a stage of transformation which we cannot always fathom. People seem more insular than they do human and it seems that this endless adrelin society we live in is just making life increasingly difficult and stressful. So I ask you the reader of this post the direct question 'does the future become harder?"

Aspergers @UQ

I thought I would provide an update concerning Aspergers@UQ   Aspergers@UQ is progressing steadily now and with a regular attendance on a fortnightly basis, we are starting to have a presence within the UQ environment.  Damian Santamauro who is undertaking very important research and who is also on the Autism Spectrum is attending our meetings as well as some other adults.  The question is sometimes asked, "Does a person need to be a student or member of staff to attend?"  The answer to this question is no for any adult can attend.  Over the coming weeks it is my hope that we can put together a letter to again approach the  University of Queensland to find a room for us to meet on campus.  This of course is going to take a lot of work!

Aspergers@UQ has been running for about 4 years now and has ebbed and flowed with membership.  The group obtain inquiries but to set the stone in place for the longer term we need somewhere to meet on campus away from noise, sensory issues and also a place where board games and general discussion can occur in a non threatening environment.  Adults on the Autism Spectrum often feel overwhelmed in the university environment.  Just finding lecture rooms, attending tutorials and obtaining understanding from academic supervisors and staff can be daunting. Why should persons on the Autism Spectrum be placed in a disadvantage once again when with help and support they can overcome difficulties?  I am willing to offer advice and support for adults in dealing with a university environment for I was once a student at university and I knew all too well of the challenges and difficulties within such an environment. 

This is only a short post but for more information about Aspergers@UQ please visit my website www.garryburge.com  and be sure to contact me should you have any queries or concerns.

Regards
Garry Burge

A Work Environment that accommodates

I was asked once the question "What would you want to see as a work environment that would suit the needs of adults on the Autism Spectrum?".  Let me begin slowly by addressing this question thoroughly and best from my own personal accounts and experience.

Firstly I believe the current work environment seems to discriminate against the person on the Autism Spectrum.  As I have stated previously the interview process in itself tends to judge a person's ability on the day more so than their ability to do the job.  This process may be the appropriate means by which to employ a regular person but for an adult on the Autism Spectrum immediate discrimination begins.  A difficulty in not knowing the necessary body language and social skills places the Autistic Person in an immediate disadvantaged and it also alienates them from a process which places and appoints a person on merit and experience.  In a work environment that employs Aspies I think modifications are required to the interview and selection process to allow the person on the Autism Spectrum to be placed in employment on their abilities.

The second and most important point is to have supervisors and managers trained in understanding the Autism Spectrum.  This helps with work flow, communication difficulties and just helps with the general allocation and performance of abilities and job demands.  Effective and professional management need to also ensure and guard against bullying, discrimination and exploitation of persons who are on the Autism Spectrum especially.  Too often adults cannot hold down a job or fear speaking up because of the fear of job security and the possibility of serious repercussions.  A manager needs to ensure that they are aware of the existence of the employee on the Autism Spectrum and have regular communication with the person where necessary.  As I have stated in the book I have written called "I Want To Work An Asperger Story" that Disability Employment Agencies need to come on board in understanding and providing support and services for adults on the Autism Spectrum within employment. 

One of the things that personally sets me  apart from non Autistic Persons is my ignorance and the difficulties I encounter with hierarchy.  I often find hierarchy an inconvenience.  I simply do not see the point in someone telling me  what I need to do and a pyramid structure where someone is at the top of the pyramid in whom I am supposed to be controlled by or accountable too.  I see my responsibility in performing my own duties within employment and I have discussed with Dr Tony Attwood who of course diagnosed me the very issues of hierarchy and how I think Aspies have difficulty with it.  There is nobody as well known as myself who has constantly upset the hierarchical process for its inefficiency.  I believe that within employment for Aspies that hierarchy needs to be done away with to allow a more conducive work structure that eliminates this so called inefficient process.

Not all adults on the Autism Spectrum want to be software testers. However what I need to point out is that it does offer a lot of potential in alleviating the unemployment of many adults on the Autism Spectrum. I believe the traditional working day of having to work 8 hours could be staggered.  This system in itself again from personal experience is just simply draining.  Why have a timesheet that records activities during the day?  Why have money when really reward seems to have a longer and lasting impact?  Non Autistic people seem to want to work for money whereas I would rather work for meaning, happiness and fulfillment?  I am currently in a situation where I am working in a job which is well below my own abilities and my work abilities simply do not comply with a career path. 

I would encourage any adult on the Autism Spectrum to ask themselves the question, "What would I like to do in a job?"  Think long and hard about it and explore the possibilities which I have mentioned with Autism Works for instance www.autismworks.co.uk  Would you like to see such a company come to your city, town or country which would provide you with meaningful employment?  

Many hands make light work

Over the coming months I intend to keep busy.  My main focus will be on ensuring that software testing for adults on the Autism Spectrum soon becomes a reality.  With the alarming unemployment rates amongst the Autistic Adult population, something needs to be done!  I hear constantly from adults, friends and family who are frustrated by governments not listening and more importantly employers who seem unwilling to accommodate those wanting a job.

I also have pleasure in welcoming on board friend and new colleague Brett Fallen.  I have been in contact with Brett who lives in New Zealand for approximately a week.  As well as being a good friend, Brett is keen to assist me with my advocacy work both here in Australia and abroad.  Although Brett's duties are limited at this stage and I am unable to pay him, Brett is happy to assist me as a volunteer in my advocacy work.  He is editing my blog and putting a personal touch to the blog over time to help give it impact and relevance to where it needs awareness the most.  Brett has also shown some interest in helping me collate contact information for Software and IT Companies in Australia and abroad.

A couple of days ago I emailed Peter MacDonald from Autism Works. I expressed to Peter the frustration experienced here in Australia of simply struggling to provide hope for adults on the Autism Spectrum to obtain a job.  I know Peter MacDonald and Chris Mitchell are very busy at the moment with the work they are doing for Autism Works www.autismworks.co.uk but I have to keep the home fires burning.  The Australian Federal Government just seems to not be listening.  I am at a loss to really know what to do.  I am hoping that things will turn around soon.  Over the coming weeks I intend to contact Information Technology and Software Testing Companies in Australia.  I intend as best I can to raise their awareness of the work being undertaken by Autism Works, Specialisterne and Aspiritech.  Although my efforts may prove difficult, Australia really needs to come on board.  We need in this country a software testing company for adults on the Autism Spectrum to obtain meaningful and lasting employment.  This of course needs to extend overseas as well.  All I can do is try and do my best.

To start any business hard work needs to begin somewhere.  The foundation stone needs to be laid and this I have done.  It is hard when you don't receive any funding but because I self fund my own advocacy work I am able to at least have some impact in the wider community.  I have written now to Rotary International Australia and even Sixty Minutes here in Australia to help raise awareness of the work I do.  I am still awaiting a response if any but it is worth a go. I just have to do something!   I have also been in contact with Alex Hawke MP via Twitter and Alex Hawke has informed me that he at some stage tends to ask the current Australian government some serious questions about the findings of the Australian Disability Productivity Commission of which I provided input as an adult on the Autism Spectrum.

Things are moving a long at a steady pace at the moment and we just need to ensure more important developments begin to emerge.  Clearly 12% of adults on the Autism Spectrum is unacceptable as the vast majority simply want a job!   They want structure and meaning in their lives and the government and the wider community simply have to listen.  Please stay tuned for further updates. 

Making for tolerance, awareness and greater understanding

Being misunderstood, confronting ignorance and misunderstanding can be difficult for anyone.  For persons on the Autism Spectrum it is necessary to see the good work which is being done by many persons, suprisingly some who are not on the Autism Spectrum in providing awareness and making the world a better place.  For the many persons on the Autism Spectrum unable to get a job there are now organisations which work hard to make employment a reality.  These organisations being Autism Works www.autismworks.co.uk Specialisterne http://www.specialistpeople.com/ Aspiritech http://www.aspiritech.org/ and Aspitech http://www.aspitech.com.au/about which are now starting to employ adults on the Autism Spectrum.  The thing is having a job is important for a person on the Autism Spectrum as it provides support, structure and a sense of well being

Awareness of the Autism Spectrum can be challenging in some if not all most instances. People may not always understand you if you are different or see things in another way.  It can be frustrating but all you can do is to try where you can to open the doors to more awareness.  Some Aspies have become advocates because advocacy work helps to raise greater awareness and some choose to remain in solitude. Again this is their personal choice.  We can only move forward in raising awareness by ensuring with adopt meaningful, realistic and non militant approaches.  We need to support those who try to raise awareness even if we do not always agree with they may do.  The world is not a perfect place and nobody has the best and easiest solutions to deal with any issues that may arise.  I see having Asperger Syndrome as not so much as a label but more so as an identity.  I think what is required is the changing of terms that seem to work against persons on the Autism Spectrum.  Such words as 'normal', 'straight', 'gay', 'dating', 'single' etc are words that really need some careful thought when used in the Aspie world.  Personally these words themselves invoke a somewhat defensive response in my personal opinion as a person on the Autism Spectrum.  Labels and boxes do not define me. It is more so my own abilities and my what I term 'unconventional intelligence'.  I see society as often difficult and challenging and at times maddening.  I find when it is all too overwhelming that solitude is the best answer in order to recharge my batteries when I have to be exposed to it again.

The only way forward is to closely examine and support the work of persons on the Autism Spectrum and NT's if you want to use labels in this instance to make change and life better.  I have closely followed the work of friend and fellow Aspie Chris Mitchell with the work both he and Peter MacDonald are undertaking in the UK in terms of software testing.  Chris for instance works unbelievably hard in the work he does with Peter.  He speaks at conferences, assists persons on the Autism Spectrum find ways of dealing with anxiety and spends a great deal of his time and energy to help make employability of Autistic persons possible.  Back home in Australia we have Aspies working in research notably at a personal level Damian Santamauro who is undertaking work in his PhD. As Damian does not have a website his work and that of others can be found by visiting the homepage of my website www.garryburge.com  Also there are Autism assocations both in Australia and around the world that devote a hell of a lot of time with no support or funding from the government such as Asperger Services Australia.  Stefanie Evans who founded this organisation www.asperger.asn.au works tirelessly and often on her own to organise seminars, speaking events and conferences here in Brisbane and hopefully soon Australia wide.  We also have Dr Tony Attwood www.tonyattwood.com.au also who is helping to spread the word.  So there are persons out there committed, passionate and hardworking trying to help make change.

In Australia we unfortunately get very little if any support from governments. This is frustrating but it does not mean we should give up.  We need to strive forward as best we can in the hope that change will take place. Change is the word I use instead of cruscades because crusades usually end up undermining valuable work or more importantly get nobody anywhere.  Things are changing but it is going to take time and people need to get behind and support those who are trying their best to make for positive change, education and awareness.  

Personal attacks and criticisms

I personally am getting fed up with personal attacks on myself and the work I do.  Persons on the Autism Spectrum are really nothing but a lost cause if they insist on adopting a 'hating NTs' or 'hating society' mentality. The world as I have stated on numerous times cannot all be one way.  Both non Autistic people and persons on the Autism Spectrum need to work together.  It is not only myself but I know of others who are involved in the area of Autism who have had to put up with crap from persons on the Autism Spectrum or claiming to be setting out on missions on hating NT's etc.

I will say this blunty. Such actions only really undermine the very cause for change.  I have over time but on rare occassions had to put up with nothing but personal attacks and very offensive comments which have done nothing but made me think why do I really bother?  They have themselves to blame and people are not going to take them seriously.   What I do, may not have the support of all persons on the Autism Spectrum. Again this is personal choice but attacking me is not going to get anyone anywhere.  All it really does is as I stated earlier, just work against the very cause to bring upon change and to better educate the wider community.

The world is not fair.  It is not only unfair to Autistic people as a demographic but it is the same for other people as well.  To overcome injustice, inequality and discrimination it is necessary to find practical and realistic solutions to deal with such problems.  I have known of persons who work in the area of Autism and mind you who work very hard receive unsavoury, rude and divisive comments that are clearly unacceptable.  Once again if people do not wish to support me, this is their personal choice.  I am not forcing you to and I really do not need your negative and destructive energy anyhow.  I would rather you leave and follow your own pathetic path of self destruction.

My own advocacy work is founded upon my own experiences of being diagnosed by Dr Tony Attwood and dealing with Asperger Syndrome as an individual.  I really have to be honest in that I question some persons who claim to have Asperger Syndrome as I find some of their behaviours really offensive.  Everyone on the Autism Spectrum is different and I personally am not going to put up with crap and personal attacks.  Such people can just leave town as I want nothing to do with them.   I also am not going to stand for cruscaders or gangs out to undermine what I do or lead personal attacks against me.  If such behaviour exists I will then deal with it with quick and direct action.  I am simply not going to stand for it.  If I see information for which I personally have an input I will intervene where I feel it appropriate and I will apply what I believe to be the correct measures to prevent it.

I do not stand for popularity nor do I stand as a person who seeks it.  I stand for what I believe to be right and to safeguard any inappropriate behaviours which I believe will undermine the need for change and education within the community.  Persons on the Autism Spectrum need NT (Neuro Typical) People. I have had and still know some very wonderful NT people in my life. They are not all out to make life difficult as some genuinely want to help.  Nobody is getting anywhere when there are cruscades against such people.  I have seen some forums and discussions that I believe and find personally offensive against the NT population. I have seen unsavoury comments made about Dr Tony Attwood and others and such comments just do nothing to help anyone.  If we want inclusion and acceptance as persons on the Autism Spectrum then we have to use strategies, words and techniques that better our cause.  It is not easy I know but simply taking a negative or devisive stand is not going to get anyone anywhere.  It is about education, awareness and trying to do the right thing and lord omighty some people on the Autism Spectrum need to realise this otherwise the future is going to be harder and very bleak.  

It's just a different way of living and thinking

I see the world around me as often confusing.  Why do people act the way they do?  Why do people not always mean what they say?  Why do I at times find myself also very emotional?  Thomas Alva Edison said it best when he described genius as 1% inspiration and 99% pirspiration.  My life has always been like this.  To fit into the so called conventions I have had to use vast amounts of mental energy which more than often has lead to 1% success and 99% failure.  I have come to the realisation in life that failure is not always on my part.  It is just that my mind thinks and acts differently to others around me.  Whereas the majority of persons not on the Autism Spectrum seem to be able to navigate the socialisation process and the conditioning process of school, I always found myself on the outer.

Thinking and acting differently to me do have their consequences. People just don't always get it and it becomes difficult when you confront people unaware of how I think and feel, often feeling powerless how to act, help or understand.  I just see myself as Aspie.  It concerns me deeply that the American Board of Psychiatrists want to do away with Asperger Syndrome altogether as a diagnosis.  I no longer will have a means of explaining myself.  It is not so much the fact that Asperger Syndrome exists as a label, it is that without the name how can I explain myself when people just fail to understand how I think and act differently to them?

It took me many years to accept I was an Aspie.  I tried often with a lot of effort to try and fit in with others around me but I just found myself on the outer. I felt like I was more an observer than a participant in group conversations.  I found myself increasingly feeling isolated in such settings and found myself unable to connect with them.  Sunday night is always the hardest night I find.  A week of my life has gone by and I look ahead to the week and I ask myself  "What is it that I can change about myself this week and will things change in the world around me?".  I also analyse my situation and see myself as getting a week older at the start of every new week.

I function better in solitude than I do around people.  When I feel sad or lonely which I am able to minimise, I reassure myself through 'self talk' and talking to myself that things will be ok.  I sometimes find certain foods irritate me as well.  I wake up some times with a feeling of discomfort as I seem unable to digest food properly that I have eaten.  I also need to function on good sleep.  When I have been in shared accommodation I just find the activity of thers irritates me.  A dripping tap, a television being on even turn down just affects my sensitive hearing and movement just keeps me on edge.  So I prefer to be on my own and enjoy solitude and change into my work mode when I have to go to work.  I am always aware of sensory issues and try hard to shut them out.

I have some good news in that I have recently connected with some more Aspies.  I talk to one regularly on skype.  I don't care what others around me think or perhaps may misconstrue but the biggest asset in life is to have a friend.  I think most if not all non Autistic people skim around this in the pursuit of finding happiness in other ways.  For me however, just talking to other Aspies who think and act like me makes me feel less lonely and the world less so daunting.

I ask you how can you accept a person who has a different way of living and thinking?  Just take the time to listen where you can and try to reach out also.  Aspies communicate differently which can often wrongly be misconstrued as having no interest in wanting to interact.  We need to accommodate people in this world who want to fit in and be understood but also be entitled to who they really are as people.  So I ask you please to try and understand persons on the Autism Spectrum and don't judge us too quickly before you get to know us.  Act of kindness make the world a better place. 

Autism Advocacy update

There have been some very important developments over the past few weeks in terms of Autism Awareness.  Copies of my book "I Want To Work An Asperger Story" are now available within some library distributors namely James Bennett, Peter Pal and also Autism Spectrum Australia.  A copy of my book has also been sent to Footprint Books Australia for them to consider.  Unfortunately I was again unsuccessful in my attempt to have the book published through Jessica Kingsley Publishers but such disappointing news opens some other doors. Alex Hawke MP the Member for Mitchell has been sent a copy of the book and on behalf of the advocacy work I do, I would like to thank Alex for his support.  Alex Hawke has also shown interest in attending the conference for Adults with Asperger Syndrome hosted by Asperger Services Australia in February 2012.  I hope to also been in touch with Alex Hawke over the coming months. Alex Hawke MP Hopefully Alex Hawke will follow through unlike some other members of parliament who have continuously let us down.  I am still awaiting responses from some other politicans I have been in contact with.  I am also pleased to announce and thank Val from South Australia for purchasing 10 copies of my book to circulate among friends and other interested persons.  South Australia has shown a great deal of interest to my book with it recently also being added to the State Library of South Australia catalogue.

A few days ago I was in contact with Peter MacDonald from Autism Works.  Peter has been keeping me posted with developments both he and Chris Mitchell are undertaking within this organisation.  I have been informed by Peter that Chris Mitchell will be speaking at an International Autism Conference at the Stadium of Light near Newcastle in the United Kingdom.  This work will be followed closely and I intend to contact Chris Mitchell at some stage to hear of any or more so important developments.  I was also informed by Peter MacDonald that he has also been in contact with Autism Works in the United States.  The work of both Peter MacDonald and Chris Mitchell needs to be admired for their perseverance, dedication, attention to detail, optimism and enthusiasm are very much invaluable.

On behalf of my advocacy work I express deep concern at the Gillard Government's lack of commitment towards the implementing the recommendations of the Australian Disability and Productivity Commission.  Persons with disabilities cannot continue to be ignored in Australia and it is up to myself and other disability organisations to continue to push home  the message and lobby where necessary to ensure that disability reform happens in Australia.  The disability system is broken in Australia and it urgently needs to be fixed.  It is not just up to one party or government to rectify it, it is up to all Australian political parties to come on board and this needs to happen soon.

On Thursday 13th October I will be speaking at the Rotary Club of Brisbane Planetarium about the advocacy work I do and also the book I have written.  I will be focusing also on the challenges and achievements of persons on the Autism Spectrum as well as the need for Australia to come on board with software testing.  As mentioned earlier both Denmark, the United States and the United Kingdom have come on board with software testing for adults on the Autism Spectrum, and Australia needs to come on board also.  I hope that one of these companies will soon reach Australia and employ adults on the Autism Spectrum here.  It provides real job opportunities for those who want and need them!

I have just started house sitting yesterday.  I spent the whole afternoon getting prepared for the house sit which provides both myself and my parents a break.  As the rental market is virtually unaffordable for adults on the Autism Spectrum, I house sit to obtain a means of living independently when I can get the chance.  It cost me $80 to purchase groceries and I have the responsibility of looking after the two cats while the home owner is away.  I have also been experiencing meltdown as I virtually have to do everything myself.  It is hard to get help when there are no services and people do not always see the difficulties and challenges I confront.  I am getting some support though through the University of Queensland Psychology Clinic by way of counseling.  I am house sitting until the 14th November 2011 and I hope that I can also give my parents a break from the stresses and strains of living with me which can be very taxing on them.  As stated earlier there are just no services for adults on the Autism Spectrum by way of accommodation.

I would also like to update anyone interested on developments for Aspergers@UQ.  Our membership is growing and I intend at some stage to approach the group to see if we can find a room on campus at the University of Queensland where we can meet.  The room would be away from noise, be conducive to our needs and more importantly provide us with a place for discussion and obtain support.  I envisage a room where we can also play board games and just catch up with each other. I hope at some future stage that someone not on the Autism Spectrum can assist us in the group so that we can have external support. Hopefully the group will also be able to meet persons not on the Autism Spectrum.  I also hope that group can assist with social skills difficulties, counseling and access to services where necessary.  We just have to approach UQ to ask again for a room on campus and this so far has been extremely difficult.  Please also be sure to visit Brisbane Asperger Syndrome Adults on Facebook for the latest research being undertaken by adults on the Autism Spectrum.

Recently I have been in contact with some adults on the Autism Spectrum. One adult I talk to regularly on Skype.  He is trying to find a job and at some future stage he is interested maybe in becoming an advocate also.  I have also been in touch with adults on the Autism Spectrum in the United States and I hope one day to again visit the United States to speak with these adults and to raise awareness as an adult from Australia.  I need to go beyond Australia to look for greater support so that we can fast track our support here to adults that need the help.

I would like to conclude by thanking everyone concerned for your assistance.  We have next year's conference to look forward to in Brisbane.  For more information please visit www.asperger.asn.au  and my own website www.garryburge.com Be sure to follow the work of Autism Works also www.autismworks.co.uk  I have a lot more hard work to do and I am currently looking for more speaking opportunities where I can.  I will be providing more updates shortly and for now I need to find help and support for myself also while I continue to campaign and stand up for adults on the Autism Spectrum.

I ask anyone viewing this post from the United States to seriously consider having me talk at a conference over there.  I am able to afford my own travel which of course requires dedication and commitment.  I prepare my own conference material and more importantly have a great deal of information to convey and inform.  It may also interest  your audience to hear of an account of an adult on the Autism Spectrum from Australia. I encourage you to visit my website below should you wish to contact me as I would really like to hear from you. I also would like to conclude by saying that I self fund my own Autism Advocacy.  I devote almost all of my free time in raising awareness, contacting organisations, lobbying, raising awareness and organising book purchases which are not easy when you self publish.  I really need to be admired in the hard work I do.  So please I ask for your support to assist me where you can.

Kind and warm regards

Garry Burge
www.garryburge.com

Dealing with employment

Talking to adults on the Autism Spectrum most if not all have indicated the difficulities they have in finding a job and holding down employment.  Most have indicated that they are fearful of being bullied or co-workers not understanding them.  I know myself the challenges.  In some instances I am aware of behaviours of certain staff members which may not always be appropriate.  For instance are other staff members aware of how they behave?

One of the difficulties which can sometimes be encountered is start and finish times. On rare ocassions when starting and finishing a job you can feel like you are being watched over.  Even though you do your job, you often wonder the sense of working altogether when in the majority of instances you have to put up with crap from other people.  You can become stressed and more importantly it can cause you serious anxiety and actually affect job performance.

The biggest challenges and difficulties Aspies have in employment is finding a fair and secure work environment. One that is free of bullying and intimidating persons who just make working life impossible.  They can either be aware of their actions or behave in a manner which is totally inappropriate to your well being within the work envrioment.  It just makes life impossible.  I know of few Aspies who simply give up and lose confidence in trying to find employment because they are afraid of being bullied again.  They also fear being sacked and having to put with the nonsense of some co-workers making life extremely difficult for them.

I often have people say how lucky I am etc. Well I would like to defend my own situation.  Do you really feel that experiencing difficulty and encountering bullying within a work environment is something that makes you feel lucky?  Do you also feel that the difficulties in not being able to get a job due to an application process which discriminates against you by way of judging your performance on the day rather than overall ability is entirely fair?  Do you also think that having to live the life of a second rate citizen missing out on the neccessary financial requirements is fair because you chose to work part time to ensure your health does not go down hill is  also 'lucky'?  Well I ask you then to reconsider your comments should you wish to make them.  Unemployment in the Autistic Adult population remains at 12%  Is this lucky?  Also depression and suicide are serious risk factors?

Workplace bullying has to stop!  It is clearly unacceptable and work environments need to understand just how Aspies work and participate within employment.  We find it hard to understand a workplace which is purely social and structured a long the lines which make our ways of thinking and participating in employment difficult.  Furthermore, supervisors and managers need to be and act responsibly to ensure both the safety and protection of all workers, especially those on the Autism Spectrum. I am concerned when I hear the stories of adults who have been sacked for disclosing they have Asperger Syndrome or for just acting differently.  Furthermore it is very alarming when I hear of the stories of workplace bullying and supervisors and managers just turning a blind eye to the problem.  Enough is enough Aspies should be able to obtain the same rights and opportunities of others under so called "Equal Opportunity".  An end to bullying needs to stop as well as other more serious issues.  The life of a second rate citizen is clearly unacceptable.  

New challenges and experiences

It often feels stagnate in life.  I put so much effort in and get so little result in return.  This afternoon I thought I would with the advice and assistance of the counseling I am seeing at the moment to try my luck at Online Dating.  I submitted a few responses to some profiles but found only one response in the woman whom had similar interests to me saying that she was not interested in connecting with me or taking things further.  This was only after one message and I found it surprising that a person could judge so quickly.  I also was somewhat annoyed in that a friend whom I used to work with decided to suddenly delete me from Facebook without any warning. This is life I guess.

Anyhow to put things in more positive context I am about to start my next house sit.  I am looking after and medicating two cats.  I also have my own space and time out which will be good.  It would be good to also have a bit of a break from the advocacy work I do.  It does get tiring at times and although I have to do all of my own work and marketing, it does become somewhat tiring.  I have managed to sell some books to one book shop and now have two library suppliers that are willing to supply the book into Australian and New Zealand libraries.  It is a  matter of the book being requested by the library for which anyone can really do and then the library will order through the suppliers.

Apart from this, I am trying to get help in overcoming some of the difficulties in life.  These mainly be an inability to socialise and find social networks.  I have also contacted Rostrum and informed them about how they could assist adults on the Autism Spectrum in being able to communicate better and I sent a letter off to Rotary Australia today to see if I can get some speaking circuits.  Once again a lot of work but how much result?  I hope some good news may come soon?  What else do I have to say but that I am doing my best to cope with some of the challenging and difficult situations ahead of me.  I did receive some good news about a book sale with a very positive response.  This response can be found by visiting Garry Burge at Triond in a Google search.  So things are going a long just ok at the moment. I am waiting to hear some news back from some Australian politicans but in the meantime it is just plain sailing.  

Existing in no man's land

I often feel like I exist in no man's land.  I am largely socially isolated and I find just connecting with other people especially difficult.  It just feels like I cannot relate to anyone.  I am currently wondering whether or not I need to go onto medication again because sometimes I feel depressed.  On rare occasions I have wondered what the point of life if people are not able to understand the way I think.  At times it can just be so bad that I am unsure of how I am supposed to act and think around people.  I am getting counseling at UQ but apart from this, I just feel that nobody can relate to exactly what I am going through. At times I find it hard to feel emotion and I can see why people on the Autism Spectrum in the very worst instances have actually suicided.  I do not support this course of action but when people refuse to listen or do not want to bother to try and listen, then what can you do and where can you go to get help?

Some years ago a person on the Autism Spectrum took her own life.  She advocated continuously for awareness of the Autism Spectrum and even wrote several books.  She experienced high levels of anxiety and it seems that nobody perhaps listened to what she was going through.  Her loss was very sad to the Autism Community because she pioneered very hard to raise awareness.

Holding down a job is especially difficult for a person on the Autism Spectrum because there are so many social requirements in employment that we seem to struggle with an understand.  I feel like I constantly upset the hierarchy where I work.  I feel afraid to take further action about a situation I am in which involves some equipment within the workplace.  This equipment has been giving me some pain in my back and back strain.  The position is for me to not be moved from where I am currently stationed and I am very fearful that should I try and stand up for my rights without appearing as aggressive or militant that I will encounter a hostile situation where I may have to re-consider my situation within the workplace. This means that I would be confronted with the option of having to resign.  By even writing this post I fear putting myself into danger but I am at a loss to really know what to do.  If I say something I will appear as a trouble maker but if I try very hard to use the equipment in order to prevent further complications then this seems the only option.  It has been brought to my attention with the use of manuals and training how to use this equipment.

I find office politics very hard to deal with.  I am surrounded by different personalities which I cannot always understand or be aware of their motives.  I feel at times that I am also being pushed out and this is not always pleasant.  Wherever I turn I feel afraid of what may happen to me.  If I consult the union I may create trouble as well as the management.  I just feel at a loss.  People do not understand that Aspies often need guidance when wanting support and I have not received much in my life.  In one institution I was manipulated within a political power game like meat in a sandwich. I was just used as a pawn in some game where a person used me to get back at another and once this was done I was without any friends.  It was hard to know where to turn.  No matter what I say or do I am either a trouble maker or I seem to upset people.  Should I really exist in a life of solitude like one Aspie does in another country?  People just seem to not understand where my struggles are and how my mind actually works.  Holding down a job in itself is just so difficult at times but I try and hang in there as best I can.  Often when it gets so overwhelming, the only solution which of course is not workable and a disadvantage is to resign. Where does one go after this if they cannot get another job and employers don't know or want to bother with a person if they are on the Autism Spectrum?  It constantly frustrates me that Aspies are not understood within the wider community. We have very few if at all any services. We are largely lonely and socially  isolated.  We do not have very good social networks and we do not succeed very well in relationships.

I feel at times that my own life has no meaning.  The whole world is just so difficult.  People around me don't see what I go through and people more or less just say that I have it easy and create my own problems.  What am I to do?  Can I just give up and live off a welfare payment when I do have intelligence and nobody wants to use it or try and help me with it?  Am I supposed to do tasks that are well below my own level of ability?  It is just so difficult.  I find Australia a very hostile country for persons on the Autism Spectrum because Aspies either suffer in silence or the ones that can adapt are forced to be second rate neuro typicals.  It is simply not fair.  All I can do is to keep up the awareness work I do.  I fear things are going to start getting harder for me at times and all I can do is hope that my resilience holds out.  I currently exist in no man's land.  I have very few if any close friends, am largely socially isolated and struggling to get by with keeping myself afloat.  Surely things can change but will they?  Perhaps the future knows?  

Existing in a human body and cognitive function

I have wondered why as an Aspie I tend to live more in my head than I do physically. I think I do because day to day functioning is difficult in a physical sense. I have always had difficulty with certain elements of co-ordination which has precluded me from playing sport and working out the world in a physical sense. I often wonder why Aspies have more issues with anxiety and wonder if this is because our minds work more visually than physically. In other words perhaps our brains work a lot harder than non Autistic people's brains do and this is why we experience meltdown and difficulty in dealing with sensory issues. Sometimes I feel as though I don't exist in a physical body. I feel foreign in it and more so I wonder if my brain is changing. As I grow older I find certain parts of my brain seem to be working and some feelings are becoming apparent. I notice the changes within my self and am starting to understand a little more about the world around me. I often have dreams that involve either flying, or water. For instance I sometimes dream that I am in an airplane, learn how to fly and or see water below me. Perhaps such dreams maybe telling me something? If I had to compare Aspies to NT's I would have to say that I think Aspies tend to rely more on their intelligence to work out the world around them. Also seeing and thinking in pictures is a way of coping more than seeing or feeling things in a physical sense. I find social situations overwhelming and become tired very easily. In fact working out constantly my physical environment and even navigating the social set up of a work environment can be mentally draining. I am not sure how many other Aspies experience this. I see Asperger Syndrome as a different way of thinking and being. Aspies don't want to be different to NT's but our thinking makes us so. We process and interpret information differently which tends to put us at odds with others around us. It also can make understanding hierarchy very confusing and difficult. Aspies need NT's to try and understand the social world and to navigate the many challenges and difficulties. The world is of course NT and Aspies are almost like aliens in that we just see things differently and often get things wrong. I think people just need to understand us better. As I get older I find myself feeling detached from myself physically in certain ways. I have often wondered who the real "Garry Burge" is and whether he exists or is more so defined by Asperger Syndrome. I just find myself having to constantly analyse who I am and work out how I need to change. For Aspies poor role models and no guidance makes it hard for us to come out of our shells. Some Aspies can be Chameleons and just mirror other people around them. It is hard for them to be or find who they really are and they seem to have the ability to just adapt to simply fit in with others. Asperger Syndrome affects everyone differently. However with Aspies we are all the same in that we are different to others around us. I think it is fair to say that we see things in black and white and are often literal with thought processes and comments we make. As an Aspie male I think I find the relationship scenario difficult because I think and act differently to NT males. The difference is that if you see things differently and act in different ways it is not always easy for women to understand because they perhaps see the more stereotypical male. I don't think Aspie men are out for ego or for fabricating so called bragging pursuits about how good they are as men etc. I also think that Aspie men confuse women because women just do not know how to grasp a man that just does not fit into the 'regular' stereotype. This is the way I see it anyhow. The dating process is like the interview process where a person is judged on performance at the time of the interview or date etc. Aspies I think are better if there is routine and consistency involved in a scenario. "So long as I have my routine and I know what I am supposed to do then I am fine", and "Why are there people talking to me about a job I am going for when more than likely I will not have much to do with them when I start the job anyway?". Such questions may arise when attending both the date and job interview which are similar. What I am saying is that both the date and the job interview have large expectations on them in terms of performance. It would be simple if the following scenarios could occur firstly with the date and then the job interview The date Questions How many times am I required to contact you? Can you let me know when I am required to show emotion and or affection? Am I able to have personal space when I am around you? I may need guidance and advice as to what I am supposed to do and how to act etc Perhaps some other questions may be added soon The interview process What is required in the job? Who is my main supervisor? How many hours a day am I required to work? What can I do if I experience difficulties in work or dealing with other co-workers? Can I be given a chance to demonstrate my abilities on the job? Is the job contract or permanent? Above are some examples of the types of questions which could be asked. The difficult thing with job interviews is that often they are set up in a hierarchical manner. A person is more involved in a process that is not always reciprocal and the interviewee can only provide feedback or questions at a certain time. The difficulty is that if an applicant wants to ask questions which may be urgent that this is seen as interrupting and such questions by being deferred can add the added anxiety of the Aspie forgetting about or not knowing or remembering how to ask the question later. The few job interviews I have been to I have found it hard to actually ask questions within the job interview itself. They seem to be controlled and hierarchical in nature and I just find it difficult as if I attempt to ask questions myself that this is more or less seen as some kind of interruption. The other problem is that I often struggle with telling interviewers my supposed good points. As well I struggle with just being forced to talk about or ask questions when I find constant talking difficult. I would prefer the interviewers showing me around the workplace and actually showing me the work duties involved. I can actually see what is going on rather than trying to rely on non visual queues and verbal language which I personally struggle with. I think also Aspies are disadvantaged in job interviews because our eyes are often fixated but not on the eyes of the interviewers. I often find it very and extremely difficult to look into a person's eyes for long periods and need to look away in order to concentrate. If the interview panel are not aware that I have AS they may think I am rude or detached when in fact I am trying to think and process information in order to answer the questions asked of me. Also when there is more than one interviewer I find it extremely difficult to shift my focus and thoughts from one person to the next. I have tried in the job interview to imagine what the interviewers are going to ask me and have answers prepared mentally prior to verbal contact. Also time management is difficult and I become anxious and get to job interviewers too early and obsess too much about how I will go at performance and what I will be asked. I am also aware of competition and know there are other applicants better suited or more qualified than I am. The whole process is just so difficult. I also find Selection Process difficult as I find it extremely difficult to be asked about my good points in a job. How do I know what they are if I am not told? Also why am I expected to lie about things or tell untruths about things I can supposedly do when in fact I have to learn them to start with? I just find it all so vexing. I am not sure if other Aspies can relate to what I have discussed in this post but I hope I have been able to shed some light on the difficulties with the interview process. Pretty much what I have raised above relates to dating but the difference is that this is all emotional.

Holding the Mass Media to account

In Australia and New Zealand there have been some negative articles about the Autism Spectrum. Such articles have done nothing but set back awareness and understanding of the Autism Spectrum by several years. There needs to be better control and accountability of the way stories are investigated, researched and written before they reach the wider community. I have personally been offended by an article which describes a juneville with a supposed Asperger Syndrome diagnosis as "a serious and frightening mental disorder" and "reportedly diagnosed with Asperger Syndrome which manifested itself in bouts of severe paranoia". Such negative portrayals with very little research and knowledge of what Asperger Syndrome is does nothing but to seriously tarnish and send the wrong message to the wider community about the Autism Spectrum. Quite simply I believe that Media Channels which includes the visual, electronic media and newspapers need to be held into account. I have worked over the years a long with others to try and portray positives stories about the Autism Spectrum which never seem to occur. No matter how hard I have tried to get positive stories, I just find myself hitting a brick wall.

This afternoon I contacted "The Courier Mail" which is Brisbane's local newspaper to personally complain about this story and how the journalist should have known better to have researched the facts prior to issuing the article. The reporter did apologize but this story should be withdrawn from the paper as it not at all helpful to the positive work that those of us in the Autism Community are trying to achieve. In all honesty the media should know better! I have rung Channel 9 also in Brisbane to complain about a previous story which also portrayed a negative betrayal of the Autism Spectrum only to confront a very rude, hostile and unhelpful assistant to the program manager. Whenever stories appear that are not based on fact and are put together in a slap dash and ignorant fashion, then the public who are concerned about an article's content have a right to complain and to spell out the truths to correct misinformation. The media should confront scrutiny and even areas of discrimination it should be held into account before it publishes incorrect information and again acts on ignorance. The wider community need to see the positive stories of persons on the Autism Spectrum and it is about time the Australian media starts to do so as it is long overdue. On a positive note my story did feature on the issues confronting unemployment in Australia called "Workplaces Fail The Anxious" in The Courier Mail on 27th September 2010. I also featured in some local radio interviews. We need more positive stories on the Autism Spectrum and this should start immediately!

Is there really bi partisan support? Well I hope so!

This afternoon I received a phone call from Senator Jan McLucas Disability Advisor. I spoke in detail with him about the various issues concerning adults on the Autism Spectrum and how more needs to be done. I discussed the need for an Autism Bill and more importantly basic services, support and awareness. I mentioned my own frustrations and how nearly at the age of 40 they I am largely misunderstood and lack social networks. People perhaps think that because I have over 2000 friends on Facebook that I have a lot of friends but the word 'friend' is very loosely used in today's world.

I discussed the need for funding to Asperger Services Australia and how greater employment support is needed to get adults into work and more importantly how more workplaces need to be accommodating. All I can do is just wait and know that I have done the best I can. I believe that for older adults access to a community worker would greatly assist the person to access the person with a disability or Autism to access the community. A lot needs to happen. I was also informed that software testing was happening and I mentioned my friendship with Chris Mitchell from Autism Works in the UK and Peter MacDonald who also works there. So things seem to be rolling ahead a little bit more!

All I can say in this post is that some progress is being made and hopefully more will happen to fix a broken disability system. I would like to see and I am sure other Australians also disability support that is lifted higher in this country. We have the wealth of talent and experience here but we need the community to understand better also. This I was assured will happen in time. We can only hope.

In the meantime please check out my website www.garryburge.com and http://www.triond.com/users/Garry+Burge