Helping to make adults into mentors

I have been thinking recently of whether it is possible to encourage adults on the Autism Spectrum to become mentors. For instance around Australia, adults could be encouraged within their town, cities and communities to actively take on a role of writing a blog, hosting a group meeting and encouraging younger adults with on personal experiences of making the transition from school into employment and university.

As you may be aware, I am working with Ben Wilshire who is an adult on the Autism Spectrum in Orange.  Ben is taking on an advocacy role in Orange, New South Wales where he lives.  I have encouraged Ben to write blogs and talk to him regularly on Skype about ways to better improve the lives of persons on the Autism Spectrum.  As far as I am concerned Ben is doing a great job!  I have also been updating Dr Tony Attwood about this work and I hope that Ben will be able to attend the group meeting with Tony here in Brisbane on Saturday 23rd November 2013.

The way I see things at the moment is that there are few or not any organisations which are run mainly by adults on the Autism Spectrum here in Australia.  I think it is about time that a more positive and active approach is needed to tackle the issues of a lack of crucial services and employment.  I believe that by encouraging adults to work together that it may help to overcome this often negative stigma concerning adults and employment.  The important thing is to work more closely with adults and to encourage them where necessary.

I am currently trying to make the Facebook Group for adults a place where the energies and abilities of adults can be harnessed upon.  The group is looking into various scenarios as well as relationships and other areas to see if things can be improved.  There has also been the suggestion of an employment service primarily aimed at assisting adults making the transition from school into employment and university.  I am primarily fed up with the lack of services that do not exist for adults who want to explore friendships and relationships.  There is just no support for adults who are wanting or are in a relationship needing some advice where a circle of friends or community are absent.  This is something that needs addressing and I am keen to improve this area.  Furthermore I hear from parents of adults who are frustrated in that employment agencies and more especially employment consultants seem to be weighed down or not providing sufficient support for adults who are keen to work.  It just seems to me that having Autism is another kettle of fish so to speak and the employment services are very limited.

I am thinking that with Ben and other adults, that some workshops run by adults on the Autism Spectrum could be implemented.  Such workshops would allow adults to help younger people and visa versa.  Hopefully this may also provide leadership and experience which may prove useful in terms of future employment?  The important thing is to remain optimistic.  Over the coming weeks and months, I intend to think of some ideas and strategies that could be created such as workshops giving advice for young persons with Autism in making the transition from school and into employment and university.  Of course it may not work but I can only try.

Please stay tuned for more updates.

Where is the scaffolding beyond adolescence?

To begin this post I firstly want to quote Shakespeare.  Shakespeare in Richard II Act III Scene II to remind us each and everyone of us of our own mortality and how we need to relish the lives we lead more.

Let's talk of graves, of worms, and epitaphs.

Make dust our paper and with rainy eyes

Write sorrow on the bosom of the earth.

Let's choose executors and talk of wills.

And yet not so, for what can we bequeath

Save our deposed bodies to the ground?

Our lands, our lives, and all are Bolingbroke's,

And nothing can we call our own but Death

And that small model of the barren earth

Which serves as paste to cover our bones.

For heaven's sake, let us sit upon the ground

And tell sad stories of the death of kings

I often wonder how many adults find the transition from school which for many may be a difficult period into adulthood?  It seems at times just getting outside the front door is in itself a challenge.  As I am now 41, I think if I hadn't been as helped where I have been, would I have made it this far?  I find that scaffolding is needed to assist Aspies but what is difficult is that for many Aspies is that often they can never really be who they are unless of course there is tolerant people around them.  Recently when I was talking with some other adults, we wanted to find statistics that accurately reflect adults in terms of support, employment and other statistical information.  This information seems hard to find unless you can find the relevant data.  

It concerns me in Australia that often people's attitude are not always both accommodating and understanding of various issues on their part of understanding.  I have found that through my own advocacy work that I am able to assist many. However what can be a challenge is the journey forward. It is hard to know for anyone what the future will bring.  Will I still be able to hold it all together in a health sense and will some of the difficulties confronting unemployment, social isolation and overcoming tolerance be met?  

All adults are different and my thoughts may not always be shared with others.  I have had my own ways of dealing with things.  In Australia I think mental health is overcome with this involvement in excessive exercise in some areas and the reliance of alcohol and drugs on the other.  Seldom do people talk about mental health as it contains this negative stigma still.  There are days when life is just mentally challenging and no matter how hard you work and think outside the box, you still are treated differently.  It is sad in a society when a younger person thinks that you are interested in them sexually when all you are trying to do is to help them and communicate.  For a lot of younger people I believe that communication issues are a real problem. Recently a study was undertaken into young children in Australia finding many irritable and having sleep issues.  Perhaps the over reliance on computer games, gadgets and the lack of face to face interaction is having a real impact?  

For me the biggest issue is the lack of services and scaffolding for adults on the Autism Spectrum.  In my life, my adolescence was spent in fending off bullies and ignorant teachers in school and having very few friends at the same time.  If you can then imagine this transitioning into adulthood perhaps you can see why I am self conscious of bullying and my need to defend myself?  If it didn't happen in the classroom is it going to happen for many adults in adulthood?  Services are needed in terms of finding strategies to deal with survival in the neuro typical world but it is important that Aspies have their own playgrounds of inclusion with other Aspies to know we are not alone.  This is one of the reasons why I formed the Aspie Adult Group here in Brisbane.  I found it tedious that after a while the pressures of conformity would force me to seek medical attention and medication.  A feeling of aloneness and desperation just to manage anxiety and social isolation as well as trying to make sense of the wider world.  

Perhaps this post has strayed away from the original topic of asking the question of where is the scaffolding for adults beyond schooling, but I invite you to ask yourself the question of how the lives of persons on the Autism Spectrum be when they reach adulthood?  Such a question needs a lot of well and careful thought. 

Some very good news

Over the past month I have been in touch with other adults on the Autism Spectrum on skype. It is with great news that my contact with Ben Wilshire has been very productive. Ben is an adult on the Autism Spectrum based in Orange, New South Wales in Australia.  Ben like so many adults has a lot of potential and energy but finds the labor market a real struggle.  The many adults I come into contact with are finding employment support difficult. Either employment consultants from Disability Employment Agencies are not turning up, not getting back to clients or just unable to assist adults with Autism to get employment.  These factors have made me wonder whether the group I run and am  involved with should take action!  Is it possible that employers can be contacted with the positives of employing someone on the Autism Spectrum as possible?  The group now has many adults in attendance and it is hoped overtime that important responsibilities and commitments can be delegated. However this needs to be done in a way that brings out the potential of adults.

Getting back to my earlier post concerning Ben in Orange.  I have worked with Ben to encourage him to take on an advocacy role and it is one that I believe he is doing very well. He now runs a group in Orange and this group is very important for rural New South Wales.  Regional Australia needs a big boost in terms of awareness and services for adults on the Autism Spectrum and Ben is doing a great job at providing a start.  The Brisbane and Orange groups are now working together and the Facebook group is now bringing in the help of others to spread the word of Autism and to work with the adults.  The group is a means of entering the Aspie world and for the outside world to see us positively and not as the often negative betrayal that is seen mostly in the media.  We have been somewhat disappointed that a newspaper article didn't go into the Courier Mail but there are more important things at the moment.  The work of Damian Santomauro is also important within Australia, especially Brisbane and like the many adults we have here, more of a focus on who we are and what we can achieve is essential.

The group in Brisbane has a lot of potential but currently I am trying to work through the many facets of a foundation base before important tasks need implementation.  The most important of these is dealing with the lack of services for adults.  Quite simply if you feel socially isolated and in need of friends, you have no choice but to put up with the 'me society' and to be referred to a psychiatrist or psychologist who will recommend medication or referral to some specialist who indicates that we are broken and need fixing.  Instead I would like to think that society needs fixing. A fixing in accepting Autism as a fact of life and to work with Autistic people rather than box or label them.  Of course this involves a lot of work but something that can be achieved with optimism.

I would like to conclude by saying that I am working very hard with other adults to look at ways of moving this country forward in a positive direction with Autism.  It would be also good one day to entertain the idea of an Autism Act which was introduced into the UK Westminster Parliament and passed and that only needs a Member of Parliament to put forth a Private Member's Bill. Until then let us remain optimistic about the path forward.

Navigating a social engineered world with an Apie brain.

Today is Friday. The end of the week again.  I was thinking today of how many Aspies have been successful and not been acknowledged for their contributions?  Perhaps they have been let down by their difficulties with social skills and trying to navigate the world which is engineered mainly for those who are naturally gifted with social skills.  One of the biggest challenges I find is that to be considered successful or more importantly 'normal', a person seems to be judged on their means of being able to fit within the larger tapestry of life.  In my own experiences, I just find the social world confusing, overwhelming and socially challenging.  No matter how hard I try in being capable of managing and being good at something, my inability to navigate the world by means of some kind of socialised natural formula just seems impossible.

There seems to be two main stream types of thinking those of us who are on the Autism Spectrum and others who are not.  It appears though that some Aspies accept their identity while others hide it perhaps thinking that the world will never change and expecting it to do so just brings upon more frustration.  I find often that within a social setting that a lot more mental energy is required to adapt and it is a bit like feeling as though you are a pulsating star trying to make your way or survive in a black hole.  The pulsating star continuing to release its energy only finding this energy becoming exhausted and lost.  At times I can sense the onset of meltdown and at times it is hard to always avoid it.  Living in a world which is largely comprised of different thinking does present a challenge.

Being Aspie sometimes feels like I am on a world stage and everything and everyone around me feels as though they are part of some larger script.  It is though you wonder when everything will be revealed or why the majority of people seem to want to pretend that things are normal when in reality they don't appear so.  It is though there exists a larger illusion and as Rene Descartes once said "I think therefore I am" seems to be one way of knowing that you exist on the stage with the characters being real.

It is interesting in life coming across undiagnosed Aspies.  They have tried to survive in a world which it seems is difficult for them and like clay they have constantly needed to remould their minds so as to fit in with the larger scheme of things.  Many are like minded but often they don't want to accept what they call a label and which I call an identity.  Being Aspie is just as much as like being left handed, blue eyed etc.

I therefore ask you should you read this post contemplate whether there are or have been successful Aspies who have just not obtained the recognition which they deserve as the socially engineered world foreign to them just doesn't know how to accommodate them?  Just because a person may not be good socially does not mean they are successful within their own right?

Spreading the word

I start today Thursday 3rd October 2013 with some good news. As you are no doubt aware, Ben Wilshire an adult on the Autism Spectrum is now starting an adult group in Orange, New South Wales, Australia. This is great news for Aspies in rural Australia as there are still many important issues in rural Australia such as mental health, suicide and the list goes on.  What is important however is that through Ben's hardwork and his determination to start and facilitate group meetings in Orange. This in itself provides much needed support.  More updates will be provided over time also.

Currently the group here in Brisbane is having a regular attendance of around 20 adults, with some new faces hopefully coming a long soon.  I am also trying to see if it is possible to get young people not on the Autism Spectrum to come a long to to the group and attend meetings.  There have been some concerns and confusion over this as people think I am trying to make the group look as though it is an experiment. This is simply not the case. What I am trying to do is to help bridge the gap between those of us on the Autism Spectrum and others not. It is not easy, I am trying to do my best and I have also tried to keep Dr Tony Attwood in the loop.  I think that there are many positives to being Aspie but sadly a lot of people don't see this.  

The lack of services for adults on the Autism Spectrum still remains an issue.  It really infuriates me that when you look for support it simply does not exist.  There are many adults for instance that encounter difficulties with relationships, making friends and overcoming social isolation and I am trying hard in the group to work on and overcome such issues. I still find it hard to have for instance a social circle of friends that I can hang out with and who can understand me properly.  I still find friendships important but it is a lot of work in making them and keeping them.  I also wish that I could do more in other areas of my life as for the past 8 years, I just don't seem to be able to stimulate my brain much.  Learning more skills and duties which involve thought would be great!  

I am very concerned about the NDIS (National Disability Insurance Scheme) as I think there are many adults on the Autism Spectrum including myself that will miss out on the necessary services which would greatly assist with day to day functioning.  Quite simply nothing seems to exist in terms of independent living and overcoming social isolation.  Also I try my best to assist other adults in obtaining employment, even trying to help them understand duties from my own life's training. For instance I am encouraging some young adults try and obtain volunteer work within a library and provide them with advice to learn more about the Library of Congress and Dewey Decimal System of Classification. A library environment seems a very supportive environment for adults both employed and those who are students, as libraries are often quite places which also stimulate intellectual curiosity and thinking.  Perhaps things will change for the future.  

I may not think the way others expect me to but I try my best to adapt where necessary and it can be very challenging at times.  Overtime I hope people and attitudes start to change but for now I can only do my best.

Kind regards

Garry Burge

www.garryburge.com