Monday, February 22, 2010

Bureaucracy and Aspies just don't mix

Have you ever found yourself getting nowhere as the so called rules make life difficult for you when you think and act differently?  Are you anxiety levels rising and you just don't see a way of getting through?  Well for many adults with Asperger Syndrome this is their experience in dealing with bureaucracy.

When an adult with Asperger Syndrome is born until the day they die, they experience the inability of fitting into the main stream of society.  Here in Australia, a great deal many Aspies want to work but lacking the necessary social skills, experience and confidence necessary they find themselves either just giving up or trying to deal with agencies like Centrelink.  Adults with Asperger Syndrome make good employees but their major hurdle is getting through the interview process which involves dealing with people to be able to enter employment. Furthermore there is the difficulty of employment shifting away from routine positions to ones which demand more multi tasking and lack of predictability.  A great deal many Aspies prefer jobs where they can work on their own and often have difficulty dealing with other co-workers or in the worst case supervising other staff.  Often these situations increase anxiety levels which in turn affects mental health which creates the negative cycle of sleep disorders and absenteeism from work.  The effect of this also is negative for a person with Asperger Syndrome does not want to take days off sick or be late for work but they have to employ what coping mechanism is best for them in the given situation.

It is truly sad when such gifted and talented individuals are left on the scrap heap due to society not knowing how to deal with and understand Autistic Adults.  Many of them have good minds but their wiring inhibits them in the workplace because poor executive function, dealing with people and office politics get in the way.  There also arises the scenarios of exploitation where lazy staff may dump unwanted jobs onto the Aspie because of the stereotyping of an Aspie wanting routine.  In employment Aspies do need and rely on routine but they don't rule out variation as well.  Sometimes just learning a new skill or undertaking another task or learning one can add to self esteem.  For adults who are unemployed the problem is far worse.  They often see no hope for the future and employers fail to understand and provide support because they simply don't have the time or support available to be able to help.  The only solution seems to be is for the creation of employment agencies which understand and provide assistance. Furthermore the Employment Consultant has to be there for the Aspie and not change horse at mid stream or neglect them in the work environment.  Just like putting a piece into a jigsaw puzzle, the adult with AS needs support to also be placed into the larger jigsaw and therefore the Consultant has to be there for the Aspie adult.

I have many friends who have AS who are sadly unemployed or in base grade positions.  They can only cling to hope as much as possible and hopefully one day the community will begin to understand their plights.  Aspies have to make do with what they have and are often content with the status quo. It is the world around them that doesn't seem to be and Aspies often feel like they are thrown around in a tumble drier with society's expectations of them or their judgments.   Bureaucracy can often be maddening and exclude or stress an Aspie but support should always be available which is what I am trying to provide for adults with AS.

I too am confronting bureaucracy at the moment as I consider future study options by way of post graduate research so like other adults, I too encounter the same problems.  Sometimes or often, we as Aspies just wish things could be simply spelled out to us instead of going through the red tape but we don't ask the world to be different just more understanding.  Hopefully in more time people will understand better and provide support for more Aspies as they enter the wide world and confront the job market.  In Denmark I believe there is a computer company which employees only Aspies.  Hopefully there will be more available and support soon.  


Sunday, February 21, 2010

Navigating the social world as an Aspie

Since my diagnosis of Asperger Syndrome in 1997, navigating the social world as an Aspie has not always been easy.  My diagnosis was a means of finding out what was wrong with me and in my own words, "a chance to re format the hard drive".  Prior to diagnosis, understanding people and following the social conventions was not easy.  I did not do well in school, I had no friends and vast amounts of my time were amused with my obsessions and eccentric interests.  I did not realise that prior to diagnosis what I was actually doing and what was wrong with me.  When I met with Dr Tony Attwood here in Brisbane, suddenly I knew what was wrong with me and I could start the process of re-evaluating and improving on areas that needs to be rectified or which needed attention.

The social world for a person with Asperger Syndrome is not always easy.  There are the unwritten rules and furthermore, people are not always easy to understand or communicate with especially if you have different cognitive wiring.  It is only in the last 4 years that I have began to make good friendships and overcome with counseling the negative thoughts which once plagued me.  I have also met other people with Asperger Syndrome and I hope I am able to give younger adults with Asperger Syndrome positive encouragement to change their lives.  It has taken me a lot of work to get to where I am now and I am in part time employment, try to promote Asperger Syndrome awareness where I can, and I am hoping to undertake further study in either a Master or Doctorate of Philosophy in Asperger Syndrome if at all possible.  I am hoping that this will raise more awareness of Asperger Syndrome in adults and provide a greater understanding of the struggles and difficulties a person with Asperger Syndrome has in navigating the social world.  My base grade job in the University Library provides me with research skills although my job does not involve research.  Fortunately the job I have in the University Library is a means of obtaining a quality of life and working within a University does provide some degree of comfort in that Universities as Dr Tony Attwood describes are places for people who are eccentric and unconventional etc.  The social world tries to make the average person rather than using the word "normal" person conform to a code of behaviour.  For a person with Asperger Syndrome our unconventional behaviour puts us at odds with this and we don't fit into the following category too well as a basic generalisation:

1. A lot of Asperger Syndrome Adults are not married, nor live in conventional relationships etc
2. Asperger Syndrome Adults represent the highest in the unemployment and sadly suicide statistics
3. Eccentric interests and obsessions create a barrier for Aspies (Adults with Asperger Syndrome) to fit into the world at large
4. Our strong points often are our successes but some Aspies just struggle to get by
5. Making friends and socializing can be overwhelming and draining

It is important to understand that adults with Asperger Syndrome do have their own struggles and because they appear like everyone, often people glance over the struggles making it difficult for adults with Asperger Syndrome to be properly understood.  Often the unwritten rules make it difficult as well for adults tend to be clumsy within the social process and may sometimes offend or break codes of behaviour without knowing it.  Also employment means dealing with people and often office politics and relating to people is not always easy precluding the adult with Asperger Syndrome from obtaining promotion and utilizing their full potential within a work environment.  A lot of adults are struggling as I write this article and the many adults I deal with are simply excluded from society primarily because they may see things different or not understand the social conventions which others take so much for granted.  Furthermore, people often judge too quickly and tend to not really take the time in trying to understand the cognitive wiring of a person with Asperger Syndrome.  It is going to be harder if proposed changes to the diagnostic criteria for diagnosing Asperger Syndrome are changed and the name Asperger Syndrome jettisoned.  This will create further ignorance and a failure for people to understand how Asperger Syndrome affects adults. 

From my own experiences, navigating the social world as a person with Apserger Syndrome is not easy.  I often find social situations draining and furthermore I don't always understand people and their motives. Relationships are also overwhelming as the sharing of space and understanding of feelings is required but I think it is important to get the message out there.  I am currently working at a global scheme of linking adults with Asperger Syndrome to each other so there is support and vital help available to help adults with finding employment, overcoming social isolation and eventual acceptance into the community. I am a member of Asperger Services Australia which can be found on the following website http://www.asperger.asn.au/Home.aspx and you may want to check out Dr Tony Attwood's website as well http://www.tonyattwood.com.au/

If you are an adult I think denial or not accepting you have Asperger Syndrome is not helpful. It makes life too difficult and furthermore it precludes you from getting the vital support needed in order to live a reasonable quality of life. 

Saturday, February 13, 2010

Finding employment on the Autistic Spectrum

The challenge for a lot of adults once they finish main stream schooling is to follow the next important step of finding employment.  From my own experience there are many challenges and hurdles in doing this and often a lack of support makes life debilitating for the adult concerned.  Firstly registering with Centrelink demands the person with AS to submit evidence of them finding employment and furthermore the process involved can make life unpleasant and unsettling.  What unfortunately exists in most instances is not that the adult with Asperger Syndrome does not want to find work but more importantly a lack of support for the adult with AS to be supported within employment.  From my own experience there are very few job agencies within Brisbane that actually offer support to adults with AS in finding employment and more than often this in itself adds to the bedlam.  Currently, research is being undertaken to find employment agencies for people with Asperger Syndrome to be assisted in finding employment.  As you can be aware I am sure that much ignorance still exists and what type of work is available for people with AS who require certain support within the workplace?  The difficult hurdle for Aspies as was my case, was landing a job and getting past the interview process.  Many Aspies are over come by anxiety which tends to preclude their chances in the first initial test of the interview.  Once the Aspie is actually in employment and provided with support they become very good employees but getting them a foot in the door is the first and difficult hurdle.  As there is little funding at the moment, it is frustrating that support cannot be provided for adults with AS who genuinely want a job and I am in my spare time trying to assist adults where I can possibly.  One friend I am helping at the moment with learning the Library of Congress so it will give him a chance in the practical assessment exercise but in terms of the interview, I really am concerned about his handling of the interview process.  Furthermore, I am concerned for the other adults who are in study and trying their best to get on with their lives.  Often not having a job means low self esteem and confidence which in turn affects their quality of life. 

What I can suggest for adults with AS is to hang in there and perhaps consider the following important steps

1. Register or make an interview with the Disability Officer in Centrelink
2. Closely scrutinize all Disability Agencies to ensure they provide support for adults with Asperger Syndrome
3. Make sure the Employment Consultant is going to support you with looking for employment and on the job support.
4. Tell the employer that as an adult you have Asperger Syndrome as it is better to disclose rather than to not.

For more information please feel free to reply to this post with any questions or queries you may have and I will try and assist where I can.

The Denial Factor

Often a person who presents Asperger Syndrome characteristics will either seek diagnosis or try to veneer it.  Often it is up to the individual to decide what is appropriate for him or her.  I found that coming to terms with having Asperger Syndrome is better than denying it as this only makes things harder.  People don't always understand AS because they may not always see the symptoms first hand.  Often in a social situation it is not always easy for others to understand your awkwardness and because of this it may be better to deal with social situations as best you can.  If people are ignorant or unaware, it is not always possible to enlighten them but in some situations perhaps carrying a card maybe a measure to promote awareness and understanding.  Who knows what is the best course of action and again it is up to the individual to decide what is best for him and her.  I have come to terms with my AS diagnosis and see it as as part of my personality.

My Aspie Account

I would like to begin my personal accounts of having Asperger Syndrome with my diagnosis in July of 1997.  At the time, I was in my second year of a University Degree, studying a Bachelor of Arts Degree at the University of New England.  Despite the many challenges and hurdles for me at the time, I was able to successfully graduate in 1999 from the University of New England.

My childhood was spend a lot in the wilderness.  I did not know who I was and furthermore what was wrong with me.  My childhood was largely isolated and I had few friends.  I can also remember having a lot of sensory problems and at the time I thought I was the only person in the world to feel at odds with everyone else.  I did not succeed well academically at school and being an under-performer, the school system believed I was an academic write off and would not go far in life. Not only did I have poor grades and no hope for the future but I also was unemployable and my parents really did not know how to help me as back then there was no help available.

To cut a long story short, I have always felt different to other people and could never really pin point what was exactly wrong with me.  I always struggled at everything, found it hard to make friends and no matter how hard I tried at something I was never successful at it or would often find myself feeling burned out.  Making friends and trying to fit in was always difficult, even now as some people just don't understand me and you try to live life as best you can surrounded by a degree of ignorance.

Promoting awareness of Asperger Syndrome

After my diagnosis of Asperger Syndrome in 1997 by Dr Tony Attwood  http://www.tonyattwood.com.au/ I wondered if I was the only person who had this thing known as Asperger Syndrome.  I remember at the time going through the membership list of Asperger Syndrome Support Network to see how many other people were affected by it and whether or not they wanted to connect and form a support group.  With the list compiled by Asperger Syndrome Support Network, I began to contact other Aspies as we are sometimes called on this list.  One of the mothers of the adults, suggested we meet at her place for a group get together and so began the Adult Group.  The group started with 3 members and grew to 40 after a couple of years.  I tried to co-ordinate the group and it was often exhausting for having difficulties and anxieties myself, I could only do so much for the other adults. 

After my diagnosis and graduation from the University of New England in 1999, I needed to search for employment and like many adults with Asperger Syndrome, I had to register for unemployment benefits.  This in itself was a demoralizing and overwhelming process.  I would constantly have to look for employment and feel interrogated by a process that was not conducive to my own needs.  I applied for job after job and felt I was getting nowhere and also feeling burned out at the time.  I had to go through paper work and a lot stuffing around to eventually obtain some support from Centrelink and to find a Disability Agency which could assist me with finding employment.  After several meetings with Centrelink, I was able to register with CRS who found me an internship in the Parliamentary Library.   This was the best job I have ever had as the management there was very supportive and friendly and I worked there for 6 months doing audio visual mainly and some other minor library duties.  When this finished however, it was back to the drawing board again to find employment and after stuffing around with finding other employoment agencies for people with disablities, I eventually registered with SEG who found me a traineeship in Qleave a state government department.  I undertook this 12 month traineeship and eventually  obtained a Certificate III in Business and Office Administration.  Although the employer new I had Asperger Syndrome, I often confronted ignorance for having to move around from department to department made my anxiety levels escalate and in terms of avoiding the bureaucratic and frustrating process, I asked a Manager when I could start in a section.  I thought this was the right thing to do and then I was asked to see the HR Co-ordinator who reprimanded me for over stepping her. I find office politics so personally annoying as people have stupid pecking orders which stands in the way of work place efficiency.  I also received criticism that I was using AS as a crutch etc and after the 12 months, I was back to square one with finding employment again.  As I was sitting around at home and starting to lose self esteem, I realised I needed to do something and I contacted a family friend/relative from my Grandfather's third marriage about organising some work experience within the Brisbane Grammar School Library.  I worked her for 12 months as a volunteer and was hoping to obtain employment in the newly built Middle School.  I was with the employment agency at the time who did nothing, only to cause me more heart ache.  I would contact them and ask them if they had heard from the Grammar School and I kept on being told that they would call back and they didn't.  Anyhow after repeated attempts, I contacted the Grammar School myself and was informed that the position had been filled. I felt really angry because I worked here as a volunteer and the job went to someone else who did not work there and I felt that my efforts were wasted and I had a break down.  I felt as though I walked off a cliff and I was feeling really anxious all of the time and felt my life had  no purpose. I found getting out of bed in the morning was a real struggle and why should I bother as I had nothing in my life to look forward too.  I knew this was not a healthy outlook and knew I needed to get help as I was having panic attacks several times a day and severe paralysis of my body with anxiety attacks.  I saw the family GP who doesn't really believe that AS exists and was able to obtain an anti-depressant.  I was on this for a while and started to look around for employment agencies again as my own attempts to find employment were positively exhausting.  I was able to find an employment agency and land work in a University Library on a part time basis and I still work there now.  I could not handle full time again as it was really stressful and part time is often challenging enough as it is if you can imagine?  I have had some difficulties here but with intelligence and being assertive I have got myself around these by finding more interests and going on holidays where I can.  I travel on my own and I am used to the fact that I will probably be alone for the rest of my life.  It doesn't bother me really as I know I need to maximize happiness and undertake challenges.  If people cannot except the way I am I just sod them anyway.

My interests are many but my main focus is on helping other Aspies.  They too have struggles and the world we live in is not very supportive of people with disabilities as people need to be self motivated and selfish.  For Aspies like other people with disabilities life can be very challenging and often frustrating and I try within my own capacity to help others where I can.  Brisbane Asperger Syndrome Adults was formed for Aspies largely in Brisbane but other Aspies also belong to it. It is a means of providing support and hopefully a place for people with AS to meet other people with AS and overcome social isolation, loneliness etc.  As awareness of AS confronts a great deal of ignorance and lack of government funding, people involved with it are doing work voluntarily.  This is the case with Asperger Services Australia who spend a great deal of time promoting AS awareness.   No where is perfect and not everyone is going to be pleased but it is good to know that hard work and awareness is being undertaken by Asperger Services Australia http://www.asperger.asn.au/Home.aspx  I hope with Brisbane Asperger Syndrome Adults http://www.facebook.com/group.php?gid=101075841589&ref=ts and my Facebook Page http://www.facebook.com/profile.php?id=1078547106&ref=name that more awareness is ensured and will continue. 

This blog is for promoting awareness of Asperger Syndrome and in time it will be updated.  Please feel free to post any comments or questions and I will answer them in due course as well.  As stated before the work I do is voluntary and promoting awareness of Asperger Syndrome is important so that the wider community understands more

Regards

Garry Burge