Comment "I just don't understand the difference"

Yesterday I was talking to a friend on Facebook.  Within this discussion the friend more or less informed me that he did not understand me

"I'm not criticising. I'm just confused. It doesn't make any sense to me, but you don't have to explain yourself to me"


I informed the friend that he should not try and figure me out and more or less just accept the fact that I think differently and process information the same way also. Why is it that I have to conform to other people's expectations?  I think in all honesty that people on the Autism Spectrum have a different way of thinking and processing information and we pay the price either through ignorance, intolerance or in the worst instance bullying.  I believe future generations will one day regret the way that Autistic people have been treated within society.  First of all we should not be treated in a condescending manner as we are not children nor are we stupid!  Secondly people have to get it out of their heads that Autistic people lack empathy.  We just show empathy in different ways.  We don't always need to be comforted in times of distress but we need people to talk to when our emotions exhibit themselves in different ways.  

 For some reason non Autistic people become defensive if you more or less try and explain things to them.  I really cannot understand the 'reactive' approach more so than the more 'tolerant' one.  I do not think it is anyone's business how I live my private life but in 'nosey parker' Australia, people seem to become obsessed with people's private lives and I think in all honesty it depicts a display of small mindedness.  I feel at times that people see me as deluded and I am supposed to 'break out of it' and 'get a lighter side'.  Do they not realise how extremely difficult and merely impossible this is if you have Autism?  For a start, the Autism Spectrum is an impairment in two way interaction and secondly most of us have extreme difficulty in keeping up socially.  We use mental energy constantly which non Autistic people have more so automatically.

I received a comment some years back "mate what is your problem" when I had difficulty in not being able to communicate sufficiently with the other person.  I felt like saying in response "I think you are the one with the problem, trying listening to what I have to say and then you may understand it!".  You reach a point that no matter what words that come from your mouth you are going to offend someone.  If you talk too much about your special interests you are told you are obsessed, if you speak your mind you offend, and if you try to engage in conversation you more or less so sit on the outer and gradually internalise and feel uncomfortable to find an excuse to leave.  This in itself is difficult when surrounded by a lack of awareness.

I do believe that people on the Autism Spectrum process information differently.  More research is required to back this up of course but much work is happening in terms of brain scanning and other techniques.  One of the realities with some Autistic People is that we expect everyone to be as passionately interested in things we are interested in.  Sometimes our interests may offend others.  We don't often understand the social queues or conventions required and sadly can offend without knowing it.  Non Autistic people seem to operate more within boundaries and conventions whereas persons with Autism are largely or totally unconventional.  We could walk in front of a crowd of people and think everyone is looking at us or we may say things that are considered socially inappropriate.  A bit like the scene in "My Fair Lady" to where Elissa Dolittle spoke her mind and blunders small talk and at the horse at the horse race.

In conclusion there needs to be a common ground for both Autistic and Non Autistic people.  The world cannot be all one way but currently it seems to be Non Autistic and those of us with Autism live in a world which largely does not understand our different ways of thinking and behaving.  This can only be overcome by providing more awareness and more importantly understanding.  The Autism Spectrum has to be understood as a different way of thinking and processing information.  As I stated earlier more research is required and the sooner the better.  I would encourage as many people as possible to visit the University of Pittsburgh website to find out the latest research into Autism.  

Autistic Communication Devices

As people are not always aware of how to deal with persons who are on the Autism Spectrum, sadly sometimes people can be treated in a condescending way.  It is a bit like being treated as if you are stupid or somehow unable to think for yourself etc.  Persons with Autism are not stupid and we just think differently than do others.  Just because we think, socialise and process information differently does not mean that we are incapable of thinking at all.  People need to understand this in order to understand us better.

At the Asperger Services Australia Conference I was pleased to see that now Information Technology Equipment is now available for persons on the Autism Spectrum.  Whereas before it was believed that a person with Autism was unable to speak, the use of a communication device has made things different.  Once again people now realise that persons with Autism can think but it is just a matter of how they do so.  Ipads and other communication devices have opened many doors to allow more effective communication for those unable to use conventional means. 

Persons on the Autism Spectrum often find communication exhausting and I think that those of us on the higher functioning end, despite being able to communicate struggle and find it mentally taxing for long periods.  This effects us in employment for the very few of us who have employment or within social situations.  It is encouraging to see older Autistic adults now involved in helping younger Autistic people in creating such devices and communication applications for Ipods, Iphones etc.  This has made people understand that Autistic people no longer exist in a world of silence and nor should they. 

As the world is exposed to more and more Autism, people need to come to terms with accepting and understanding that Autism is a reality.  Not only does it exist in children but adults also.  Communication devices have opened many doors and it is great to see that communication is now more possible.  Wouldn't it be good to see persons who find the means of communication difficult able to communicate? 

On browsing Facebook I noticed this organisation Autistic Smiles and I have tried to make contact with them. I notice that there are few Autistic Adults now directly involved with the creation of such communication devices for Autistic people.  Surely other countries can come on board with this?  We need to see a bridge of communication between Autistic and Non Autistic People.  It would be good to see such devices and applications in schools, universities, workplaces and in the wider community.  Many doors will open. 

Meeting today with Gordon Sanderson

This afternoon I met with Gordon Sanderson who has a son on the Autism Spectrum about ways adults with Autism can be employed.  Gordon asked me several questions about how I handle employment and more specifically of whether adults on the Autism Spectrum can hold down a job.  I expressed a great deal of interest in helping Gordon to find ways of assisting employers to better understand Autistic Adults and to give them a chance in employment.

One of the biggest challenges in employment is the shear amount of mental energy required in order to get through the working day.  Added to this are also the performace and direction issues.  I would like to be able to assist adults in finding employment and holding down a job but more importantly see the creation of "Aspie Friendly" employment which allows adults a real chance in employment.

I have been contacted by the ANZTB (Australian and New Zealand Software Testing Board) and I hope to present to some software testing authority people in Brisbane on Tuesday 3rd April 2012.  We really need to get the ball rolling in Brisbane and more importantly in this part of the world.  I will provide updates when they come to hand.

This weekend I will be visiting Murwullimbah and meeting with adults on the Autism Spectrum at Cabrita Beach in northern New South Wales.  I have also been in touch with a young adult interested in Science and Engineering in this region.  So things are moving a long nicely.

I am wanting to start a skype group for Aspies.  What we need to do is have an informal roster of adults taking turns in hosting a skype conference or perhaps a once a month touching base.  This I intend to look into.  On another front I will be learning new duties in another branch of the University Of Queensland Library, so things are going well there also.

More and more adults are starting to connect and this is truly magnificent.  More updates soon.  On the cards is support for an adult meeting room to discuss issues such as employment, support for managing finances and other issues.  

Letter Proposal to Canberra

Dear Canberra MP

I am an adult on the Autism Spectrum in Brisbane, Australia.  The Autism Spectrum is becoming a world wide reality with more adults being diagnosed as being on the Autism Spectrum as we speak.

Recently statistical information was provided from Mr John Greally an adult on the Autism Spectrum from New Zealand as to the exact number of persons on the Autism Spectrum worldwide.  John arrived at the following information

"Based on the sounder SNAP project Revision 2 (2009, Baird et al) figure of 1:92
and 7,023,219,161 (World Population Clock, today)
I get 76,339,339 people with an ASD
(Kanner's+CDD+HFA+Asperger's+PDD-NOS, not Rett Synd anymore).
- Turkey or Iran or Egypt have roughly that number of people!
- ASD represents around 7.5 to 8% of all world-wide disabilities (15.6% of humans alive approximately have a disability) and about 15% of childhood disabilities!
- ASD is equal in numbers to Multiple Sclerosis (0.15% of world pop) plus Alzheimer’s (0.4%) plus Blindness (0.6%)!
- ASD attracts about 1/14th as much government funding as those conditions per individual affected.
- About 6/7ths of Autism is Asperger's Syndrome or PDD-NOS.
- Between 1 in 4.5 and 1 in 5.8 people with Autism are female".


As you can see Autism is a world wide reality.  Recently a story was aired on "A Current Affair' about Ricky Stuart a Rugby League Player here in Australia who has a daugher Emma with Autism.  This story revealed that there are many families aching for support and change not only in Australia but world wide for governments to become better aware of the Autism Spectrum.  We want action and something to be done.  The National Disability Insurance Scheme referred to simply as the NDIS seems to be hitting a snag.  Quite simply nothing seems to be happening and Australia has scored very poorly in terms of disability ranking worlwide scoring 27th as an OECD country.  The bottom of the list.  Something needs to be done and fast!

It seems that political parties are ignoring Autism but I have been pleased to note that the Liberal National Party here in Queensland has supported my advocacy work by listening.  The local candidate has put me in touch with the Liberal National Party Headquarters here in Brisbane and I have spoken to them about my concerns and the many people who so desperately want government to listen.  In all honesty I have heard nothing from the Australian Labor Party and I advocate as best I can to get my voice heard.

I have heard that Tony Abbott will support the National Disability Insurance Scheme but only when the budget has been balanced.  Is there any chance that the coalition could clarify its position on the NDIS and whether or not it or all major political parties in Canberra will support a combined effort to get something done?!  Currently the NDIS is simply stagnating and people want and demand action.  

We can only hope that things improve for disability soon as all disability sectors are not getting the support which they require.  People with disabilities should no longer remain as second rate citizens and I frankly do not care what critics may voice in relation to this post but there are people who could be better off than they are at present.  We need political parties to listen in Canberra and something urgent needs to happen with the NDIS now and not 5 years.  I participated in the Productivity Commission and I for one would like to see changes happen.  I urge all Australians at the upcoming federal election to approach their local candidate s and ask them what is Canberra going to do about the NDIS in Australia. Also should a party be formed for Australia called the "Autism Action Party".  I am in consultation with some adults on the Autism Spectrum in New Zealand who are also lobbying very hard to make changes in Wellington, New Zealand.

Let us strive for more acceptance, understanding and change

Kind and warm regards

Garry Burge
www.garryburge.com 

Feeling I am at a dead end

I really enjoyed attending the Asperger Services Australia Conference between Thursday 16th to Saturday 18th February 2012 hosted by Asperger Services Australia Not only did it provide adults with a chance to meet each other but it also enabled an opportunity of not feeling alone being an Aspie. 

I feel at a loss currently because I am in a job which does not utilise my skills and abilities.  I have become so disillusioned with employment as there just seems to be too many obstacles that get in the way of making satisfaction and stimulation possible.  I have reached the point of desperation in that I want to do something for people with Autism.  I really do not know exactly but I am going to look into possibilities.  I am sick of nothing being done for people on the Autism Spectrum and enough is enough.  Services are needed and employment support also.  This afternoon I am meeting with another Aspie in Brisbane to look into options and on Thursday I am going to have a meeting with an employment consultant.  I just feel I am not understood and the tentacles of conformity yet abound.  People need to understand more and it saddens me that not enough is being done.

Recently I heard back from the Kenmore Baptist Church and it is through them that I hope to broaden my social circle.  I am currently spending a great deal of time sitting in front of a computer when I know that being more around people in terms of overcoming social isolation is necessary.  I will try my best.  

Last night I watched a story on "A Current Affair"  called "Fighting Autism" I would like to get in touch with the persons concerned in this story as like many families who are aware of Autism they should not be 'fighting' Autism but more so accepting it.  What people do not understand is that Autism is reality and people have to stop pretending it is not evident nor exists in society.   In the story the Rugby League Player - Ricky Stuart and his wife discussed their daughter Emma who is 14 and has Autism.  What is sad for them as parents is that Emma does not called her parents mum and dad.  One of the realities of Autism is that often empathy is shown and expressed in different ways.  When I hear of families affected by Autism it makes me wonder about the many families around the world who come into contact with Autism.  It is a reality and more needs to be done I believe.

As an adult on the Autism Spectrum I feel as though I am pioneering and also battling.  It is hard when people think that just because you look like everyone else that you think like them also.  Holding down a job for me is a day to day challenge and I am overwhelmed largely by the social component.  I feel that trying to establish a so called career path is exhausting and furthermore trying to find a social circle outside of working is impossible.  I am 40 this year and I still live with my aged parents.  They are in their early 70's and are anxious a lot about what will happen to me after they pass on.  I don't even know myself what will happen to me and at times I feel so overwhelmed by life that I literally think the worst thing is that I would have to live inside a cardboard box.  I also have been depressed by a book retailer asking me for a refund of two books they ordered.  Why do people behave like this?  Surely having the two books is not going to hurt them and they can find another library who wants them? 

I often find that people try and hold me accountable for things I mostly do not understand and then when I do not understand then I am criticized.  It is truly sad that for persons on the Autism Spectrum that being so very kind as we usually are that people treat us with contempt or often are hostile towards us.  I wonder why this is so?  At times I feel alone and I wonder what purpose there is in life with the lack of implementation of the National Disability Insurance Scheme here in Australia.  There are no services or you have to have a lot of money to pay for them and still the majority of people do not understand!  I hope soon things improve and that I no longer feel like I am at a dead end in my life.  Maybe other people can relate to what I am talking about? All I can do is try and remain optimistic. 

Re-introducing the Legislative Council in Queensland

Queensland has always been governed differently to the rest of the Australia.  This mainly being that Queensland does not have a Legislative Council (Upper House).  This chamber was abolished in 1922 and ever since then it seems that politics in Queensland has functioned as a unicameral state.

However, I wonder whether the Legislative Council should be re-introduced  into Queensland?  An upper house acts as a house of review and also ensures checks and balances.  It seems that throughout Queensland politics that governments and more so premiers have accrued a lot of power.  This creating a one party state system.  Quite simply legislation is introduced into the parliament, then sent to Governor for Royal Ascent. However, is it being reviewed and should an Upper House be the means of carefully checking legislation and debating it more before it goes for Royal Ascent?  Current governments have set up endless committees which actually cost more than a chamber itself in reviewing legislation.

When the Queensland Legislative Council did exist, MLC (Members of the Legislative Council) were appointed more so than elected. Unfortunately clashes and gridlocks occurred between both the chambers which frustrated Labor Governments which more so wanted the Legislative Council gone.  I tend to think that an upper house is required because I think state premiers just accrue too much power and there just seems to be no accountability.  The re-introduction of the Legislative Council from what I understand only requires and act of parliament.  Referendums were conducted after the chamber's abolition which were voted against but people seem to be reluctant to accept that the Westminster System requires a bicameral system.  One without the other is a bit like having the horse without the cart as both are required to allow for smooth operation.

I believe that Queensland needs to reintroduce the Legislative Council because accountability and good government seems to be lacking.  No accountability means that legislation is not being debated and reviewed properly for when it is signed off as law.  You have to ask yourself are the affairs of government being executed properly and is a one party state a healthy means of government?  In all Australian states except Queensland there is a Legislative Council.  Queensland politics seems to have taken a different course without an upper house which some may argue means less interference and better governance?  But does it really?  What are the pros and cons of not having an upper house in Queensland?  Given the size of the state is adequate representation occurring?  Here is some reading which may introduce you concerning the abolition of the Queensland Legislative Council in 1922.  

Asperger Services Australia Conference

As most if not all people are aware the Conference "Living side by side, connecting with people on the Autism Spectrum" occurred in Brisbane, Australia between Thursday 16th February to Saturday 18th February.  More information about the conference can be found by visiting www.asperger.asn.au

I found the conference very informative and I have been asked to provide the slide presenatation which accompanying my presentation "Navigating the World from Employment and Advocacy".  I am happy to do this upon request.

What I found interesting about the conference was that it provided a platform for adults on the Autism Spectrum to give their voice to the audience present.  Adults came from across Australia and New Zealand to speak.

The conferences I attended were as follows

Day One - Thursday 16th February 2012

My own presentation above mentioned

Damian Santomauro - Researching Battles

Kelly-Ann Van Setten - Learning Patterns for University Students with Asperger's

Leith McMurray & Gabrielle Hogg - Aspies and the Social Media

Day Two - Friday 17th February 2012

Anthony Julian - The Last 25 Years

Kat Stork-Brett - Sex, sexuality, and gender identity in Autism Spectrum Disorder

Kristen Veltmeyer - Label This: Aspergers, Success and My Journey

Day Three - Saturday 18th February 2012

Gabrielle Hogg - Living with ASD and the Biomecial Journey

Leith McMurray - Workplace Rejection

Angus Gray & Dr Gilbert Bond - School Refusal and Home Schooling

Brayton & Emma Tomlinson - Living With Aspergers

Conclusion

On attending all the sessions, they all provided an important perspective into the varying degrees of the Autism Spectrum.  Of importance was the presentation referring to sexuality.  Many Asperger Men find relationships extremely difficult and the research from Kat Stork-Brett highlighed important research being undertaken.  Other presenations provided personal experiences from adults in their day to day lives from all different ages and shared experiences.

I feel that out of the conference a greater awareness is required in understanding the Autism Spectrum.  The world cannot obviously be all "Aspie" but neither should it exist as all NT (Neuro Typical).  There needs to be a common ground and better understanding.  More importantly is the need for services for adults and a fast tracking of the National Disability Insurance Scheme.   I think personally it is great to see both Australia and New Zealand working together in connecting with each other and linking to the rest of the world.

I had the opportunity to ask many questions.  On my mind was whether or not RANZCP should provide more support in therapy more so than medication?  I also asked adults of their own experiences and whether or not services for adults should receive greater attention and funding.  Although all persons on the Autism Spectrum are different, I do not expect my questions to be the same nor do I think that amongst the Autism Community there should be segregation from those who may think or act differently to others that are also Autistic.

For anyone interested Asperger Services Australia  filmed the entire proceedings and more information can be found by contacting them.  Asperger Services Australia was also fortunate to have received $5000 from Colonial Mutual which I understand funded the event.  For more information I would encourage you to contact Stefanie Evans Director of Asperger Services Australia who can answer your questions more succinctly.

I hope to see out of the conference a better understanding and awareness of the Autism Spectrum.  We need the Autism Spectrum to be better accepted and understood more so than remaining in darkness and ignorance.  I hope over the coming months that more support will be made available and more barriers can be broken down.  It was comforting to know that Autism Works was better known and hoepfully soon it may even start in Australia?

I enjoyed the conference overall and I hope that I have helped to enlighten the wider world more.

Kind regards

Garry Burge

www.garryburge.com

Sometimes I feel like yelling but I know I can't

Sometimes I find that I am absolutely frustrated with life.  I just cannot understand why people do not get those of us that think and act differently.  Although I look like everyone else, I just find that when I react to certain situations differently or process information in a way that other people do not understand, then I am somehow to blame or are responsible.

Having Asperger Syndrome is just a different way of thinking.  People cannot understand when you think and act differenty to them and for some reason they have to be dismissive or in some instances even nasty to you.  I may look like other people but I am struggling to find the help that I need.  Finding friendships and more importantly looking for or finding relationships is for me more so traumatic rather than happy.  I don't know at times how I am supposed to think and act in certain situations and when people expect me to think or act in a way they feel appropriate, I just feel like on some rare ocassions like yelling.  Although yelling is not a practical way to go about things, it is frustrating when people just do not get it.  How I see and interpret something is compeletely different in how they do.

I received a letter recently or more so an email indicating a delay in the National Disabilty Insurance Scheme.  I really do not know why this is happening as there are so many people including myself that need greater support.  I currently live with my elderly parents and cannot afford to live independently as the rental market makes this impossible.  I do not want to be dumped into a house commission situation but people just don't seem to understand AS.  Although they say that they cannot see anything wrong with me, I fail to understand that once this observation is made that they feel it appropriate to reject or instead make comments which in themselves can be very hurtful.  People think Aspies do not have feelings and often we are castigated for hurting other people but when our own feelings are hurt, then people just don't want to listen or use some reasoning that all people think like this other than those of us who are Aspie.

I find myself largely in social isolation.  I find I am talking to myself more than I am with other people and quite simply people just either don't want to get involved or want to bother with me.  If this is the case then what am I supposed to do apart from living on the fringes of society?  I will try my best to speak about advocacy work at the upcoming presentation hosted by Asperger Services Australia and people can also watch my youtube channel.  I am on Facebook also under Garry Burge.  More needs to be done and we need to get the message out there!

Being the odd jigsaw piece

I turn 40 this year and I ask myself what in the past 40 years have I accomplished?  I see my abilities more so as successful in an unconventional sense.  To be good at anything I had to put the effort in but being a genuis I am not. I had to get to where I am now through hard work and re-invention. I get tired of people who constantly say 'well if this is what you want' or 'why do you do this' etc?  I just see the world differently and process information in my owy way and yet I feel I am some kind of deviant simply for being myself.

One of the biggest challenges and difficulties in having Autism is that people cannot see how it affects you because physically you look like they do.  It is harder when you look more like a regular person and yet think like an Aspie.  The expectations are much greater and furthermore the misunderstanding and ignorance is more of a problem.

Why then do I describe myself as an 'odd jigsaw piece?".  Well I exist in a society where the majority of people are encoded with a form of communicaiton I just do not and cannot  understand.  There seems to be so many conventions and non conventions and if you break them you realise it in some situations.  As I get older, I really do not know who I am at times.  I exist in a physical body but yet what other people have, I seem to lack.  For instance a man my age would more than likely have a partner, children and be in some job.  For me I still live with my parents, have few friends and find a relationship, well the thought of one a depressing exercise.  I just do not want to go there but yet the majority of the world it seems fails to understand this.  It is hard to live independently when you struggle at being able to communicate in a social sense.  What is even more difficult is this 'single' stigma as accommodation is often for couples as well as other benefits and requirements etc.  It is just not a world made for people who are wired differently in a cognitive sense.

As I grow older, I feel I am getting lonliner and life seems to be becoming somewhat more of a suffocating experience.  Perhaps people fear me as deluded and some kind of freak show that has failed conformity in a confused socialisation process?  I have had some people say that I put myself down or that I should be more concerned in what other people think about me.  In all honesty I have no interest in what others think of me and I live life the best way I can and survive as best as possible.  Recently I connected with some more adults.  One lives in Denmark and another in the United Kingdom.  One has an AS diagnosis and the other is wanting to get one. I am also connecting with some adults in Brisbane but trying to get a group of adults centrally located in Brisbane is just about impossible. It is not the fault of the adults but more so the lack of culture here and places which are conducive for adult meetings.  Most Aspies are disadvantaged by poor infrastructure or society not understanding them.  Walking out their front door is like walking into a mine field so they prefer the life line of their computer to communicate on Facebook.  Indeed Facebook has the highest usage from Aspies in terms of Facebook chat.  I use it a lot to communicate to other Aspies when and where I can.

Australia is slow in understanding the Autism Spectrum in adults and I hope this soon changes.  I feel like the odd jigsaw piece but I am comforted in that I know a big network in Australia and abroad.  Believe me we do exist and we are becoming more dominant especially on Facebook.  In the next 5 years diagnosis is going to increase and people will need to understand.  I am tired of NT tribalism  and I hope that Australia and New Zealand improve.  Now what exactly does the odd jigsaw piece mean to you?