Victorian Autism Conference

So this is a rather late post but three weeks ago I attended the Victorian Autism Conference put on by Amaze (Autism Victoria). I'm not quite sure why they let a wild Canberran in amongst all the other Victorian based speakers with lived experience but I'm glad they did and had a great time.

The biggest thing that probably stood out to me from this conference was the welcoming atmosphere. This surprised me and I imagine is fairly unusual for a conference with approximately 900 attendees.

It was a jam packed couple of days - I went straight from the airport to my interview for Lateline which aired on the Wednesday night. I then spent a night with family and the following afternoon I headed to Etihad for a tour of the venue and to check into my hotel. My friend Daniel Giles and I walked into the hotel together and the receptionist was kind enough to put us in rooms next to each other.

I enjoyed all of the main speakers presentations and thought that the conference presented a good variety of speakers and valued everyone who was there to speak as having something valid to say. I didn't get the vibe of their been separate camps of "token autistics" and "real professionals".

I was a bit taken aback when I went to Dr Lori Ernsperger's session and she waved at me from the stage then came and talked to me before she spoke (we were both featured in the Lateline piece and had been emailing a little bit after conference media guru Michael has introduced us). After the session she introduced me to a parent who was asking questions so the parent could get both kinds of expert knowledge. We even got to have lunch together - which was really cool and a bit surreal.

In the afternoon session I spoke along with 3 other speakers with autism. We all shared our experience and words of wisdom and everyone did a great job. We had a good turn out, gave out a lot of business cards,  answered quite a few questions and enjoyed meeting one another and listening to what we had to say.

I got to meet quite a few amazing people from the I Can movement as well as other parents and people on the spectrum. It was full on but fun and we made the most of the limited time we had including dinners and so forth. On the second day we had a networking session facilitated by Chris Varney and Wenn Lawson as well as a lot of other cool and interesting sessions. Chris also did the autism community proud in his closing plenary.

I left this conference feeling encouraged and excited about the future of the autism community and possibilities for everyone to learn from one another and work towards commonly held goals. I also was exhausted, but that's all good and totally worth i

Aspect Autism in Education Conference

Aspect Autism in Education Conference

On the last day of last month and the first day of this month I was in Sydney for the inaugural Autism in Education conference hosted with Aspect (the autism association of New South Wales). I mentioned a little while back that I was going to post a summary of the conference from my perspective. 

It's taken me a while to catch up on sleep and mental energy in normal life after racing around to two conferences in two different states and visiting family. 

As a conference nerd (took a week and a half of my annual leave for this) and somewhat of a research junkie (at uni I was the one undergrad who went along to all the psychology colloquium lectures) I'm probably a bit biased towards liking conferences whether or not they are accepting and diverse but here goes...

The first thing I'll say is that I really liked the size of the conference (about 450 delegates) and the location (the layout was really cool, breakout rooms were close to eachother and who wouldn't want to meet in an old rail yard). 

Walking from my hotel next to central to the venue in Eveleigh was a good way to the first morning. I saw fellow APAC 1013 Future Leader Alex pretty much as soon as I walked in the door and soon after saw and got to have a chat to the amazing, compassionate and incredibly busy Judy Brewer who was also giving the opening plenary.

Some of the speakers I enjoyed hearing included the lady from the WA Catholic Education Office presenting her work on trying to change PE teachers attitudes towards students with autism and give them more appropriate sports options and Erica Dixon from the Victorian Education Department talking about what that state is doing to better serve students with autism by better serving all students. It was a real treat to get to meet Wenn Lawson and hear her present on autism and attention and it was very cool to see so many people I knew get up in front of people and give great talks: Thomas, Daniel, Meredith & Jeanette. Apologies to Mathew and Matthew who's talks I didn't get to see.

I thought it was good having a themed conference. Education is a broad enough topic to have plenty of scope but narrow enough that people are present with the same purpose. As someone who wasn't diagnosed until after finishing school it was useful and valuable to learn about how kids with autism are supported in schools. I particularly enjoyed learning more about program 2 of the autism

CRC and the opportunity to chat and meet with a wide variety of people. I also thought it was good that they included an art exhibition and dance groups in the program.

I can't really comment on the stalls and posters but the layout of that area wasn't overly helpful for me. It was a long and fairly thin area with stalls on either wall and tables of food and drink for lunch and refreshments in the middle. This made for quite the cacophony in breaks. I particularly felt for the people with special dietary needs as reaching the table with their food involved walking through the length of the crowd.

Around the corner from the main break area was the ASC chill out room. This was pretty well set up, giving a space to have space and to chat with other autistics. What would have been useful would have been to have had exclusive use of the room or at least to know ahead of time it was going to also be used rid luggage storage and as  a dressing room for the dance groups.

I enjoyed the social side of the conference. I like meeting and listening to people. I quite enjoyed the drinks after the first day's sessions and appreciated Meredith's informal support when trying to meet  people during the breaks. If I were to change anything about the conference it would have been to make the breaks a bit longer. The short breaks made it difficult to transition between sessions and meant that chatting to someone could potentially mean missing lunch.

My presentation itself went well. I was happy with what I ended up conveying and I didn't get too nervous. I spoke about my experiences of student driven open ended learning in high school, and in particular being a founding student at the Australian Science and Mathematics School. Afterwards an academic who works in the education department at Flinders Uni came up and introduced herself. She said she had been involved in the setting up of the school and that I'd conveyed their take on learning well. She also said she should have recognized my name because it would come up all the time when I was a student there - somewhat the student who was willing and able to do anything :P kind of surreal but also cool to know I had a reputation like that that someone could recognize ten years on.

All in all I am glad I went to the conference. I enjoyed being able to share, learn and catch up with people.

Next blog post should be about the Victorian Autism Conference. 

Onward and upward and not quite real

The last couple of days have been a bit interesting. I lay in bed tonight and reflect on the fact I have spoken at two autism

conferences in the last week and been interviewed for TV. 

If anyone hasn't seen it this is the link - http://www.abc.net.au/lateline/content/2014/s4062417.htm

So much more to say but it really has been a big day and right now I need to sleep 

Spades and shovels

I'd like to start this post by saying that I've had a great time at the inaugural Autism in Education conference put on by Autism Spectrum Australia. 

I hope to reflect a bit more and post about what I learnt and how I enjoyed it in the coming days. There is something that has been niggling at me for a while now (not just during this conference) and I feel like now I have the words to talk about it. So here we are on our way to an observation which I hope people understand is an ongoing thing which is in response to a number of experiences rather than my predominant feeling about this particular conference which I found both informative and immensely enjoyable.

Yesterday I was one of four speakers in a session of diversity. I got up and spoke about my experiences in high school and particularly my experiences of choice and flexibility in learning. 

After I spoke the other speakers all made sure to tell me I'd done a good job. This is something that I do appreciate, but there is a comment I would like to make about this polite and well-intentioned social practice. 

Good job is a pretty ambiguous comment and I'm not really sure if people would have said something had they not known about my diagnosis. It could equally mean "good job for getting up there and talking - it can't have been easy" or "good job that was a clear and informative presentation and I enjoyed it". When I'm unsure whether it's just one of those things people feel somehow obliged to say because it's polite, telling me I've done a "good job" after I get up in front of people and talked about my experiences doesn't really tell me anything beyond the fact that people wish to be supportive.

The purpose of speaking at conferences is to share ideas and communicate a clear message. Knowing how successful I have been at this is useful. I realise not everyone may feel comfortable giving me specific feedback but knowing a bit more about what I did well is useful i.e. It was really good how you explained blah or the personal stories made it easy to relate to. Equally, I'd prefer to know if my presentation was vague and confusing than to live in ignorance and have people misunderstand my intended message.

I understand that people don't want to "beat us down with a shovel" (be bluntly honest and in doing so make us feel hurt badly about ourselves which may damage our self-esteem) but whilst encouragement is important we value the truth. We prefer people to "call a spade a spade" (to tell the truth and not lie in order to protect someone's feelings from being hurt). One of the things that gets brought up again and again as one of the strengths of Autistic people is our honesty - and usually we prefer people being honest with us too. Constructive feedback given well allows people not just to be encouraged but to do a better job next time. If we haven't communicated something well we'd rather know that and rephrase or improve it for next time than be told we've done a brilliant job when we actually haven't.

To be clear here I am not talking about the words or actions of any specific persons. I appreciated the encouragement given to me by people who heard my talk yesterday at the Aspect Autism in Education conference. What I'm referring to here is a general trend or culture.

The culture of low expectations is an often subconscious, but nevertheless persistent, problem that isn't unique to Autism (see Stella Young's speech from TEDxSydney - http://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much ). I'd like to know if I did a good talk by the general standards of a good talk not just a good talk for someone with a  developmental disability.

The thing that I find ironic about this is that many of the people likely to give this ambiguous, polite kind of feedback are researchers. As someone who has studied psychology I know that researchers go to great lengths to try and minimize response bias in their studies. That is to do their utmost to ensure that people aren't responding in a way they view as socially desirable or presume is what the researcher wants instead of really being honest. Autistic people are often highly logical but we can't create an objective external view of ourselves, we need the feedback of others to assess our communication and collect evidence reassess how we can be successful. This means that specific, constructive and honest feedback is highly useful.

So by all means we appreciate people's encouragement. But when being told we have done a good job - we would like to know when it's the objective truth and not just one of those things people say.

Twitter account

Don't know how much I'll use it but I've now created a twitter account - @boldlygrowing

Someone was in the paper...

http://m.canberratimes.com.au/act-news/study-to-look-at-autism-in-adults-20140710-zstwv.html

Anticipation

I am currently sitting on a bus part way between home and Sydney. I am on my way to speak at my first autism conference.

I'm really excited - but if I'm going to be completely honest I do have mixed emotions. I've knocked on many doors in the last year or two, and recently some of them have opened. Whilst this was always the aim - success still comes as a shock. I feel a sense of responsibility and want to do well in response to the faith others have shown in me.

I've always been motivated and ambitious - but that doesn't mean I'm an up-the-front person. My favourite place to be is in the middle of something, but I'm more than happy for someone else to be the public face of it. 

This leads me to ask myself why I do it.

I think the answer lies in my conviction. I care deeply about autism issues and seeing misguided stereotypes broken down and new opportunities and relationships built. I want autism to be in the public domain and in the media - if the tool I have to achieve that is my

own face and my own words then I am compelled to do so because my conviction runs deeper than my self-doubt and shyness.

Today is the start of the rest of life. I stand for a moment in anticipation of the future and run forth with open arms...

Roses are red, Autism is blue?

Today is World Autism Awareness Day. It's pretty cool when these things get international and are big enough to be recognized by the United Nations. The secretary-general releases an official message about it each year.

In some circles this day is sometimes referred to a 'Light it Up Blue Day'. For me this name just reminds me of Daniel Tammett's autobiography 'Born on a Blue Day: Inside the Extraordinary Mind of an Autistic Savant'. This doesn't actually have anything to do with the name. Light it up blue is an awareness and fundraising initiative started by Autism Speaks in the US. It has since grown into a global group of events and had been run in Australia for the last three years.

The Australian arm has been pioneered by Autism Awareness Australia an organization founded by parent-advocate Nicole Rogerson. If you want to know more about the Rogersons' story you can watch the Australian Story episode 'My Name Is Jack' which aired in 2009 (http://www.abc.net.au/austory/specials/mynamejack/default.htm).

Among those of us with lived experience the blue issue is a little controversial. People want to raise awareness but they don't want to be associated with or raise funds for organisations whose agenda they may not agree with. This leads some people to intentionally wear blue on April 2 and some to intentionally avoid it. Personally I prefer this colour association than the association between Autism and rainbows or puzzle pieces.

For the sake of disclosure though I am not wearing blue today. I am neither for or against it and "to blue or not to blue" didn't rate a mention in deciding what I'd wear today. If I did wear blue I suppose it would be in the hope that someone would comment on what I was wearing and that would lead me into a conversation about Autism. If this is why you choose to wear blue or some other sign of Autism awareness today I think that is a good reason. For me I've decided its unnecessary as I'm pretty sure everyone I work with already knows I'm on the spectrum and I have had those conversations with quite a few people.

This is a long way of saying I think this issue is secondary, light it up blue day is secondary and World Autism Awareness Day is what we should be focussing on whatever way we choose to try and raise awareness. Colour choices only have power if we give them that and if all you do today is decide and discuss whether you should or shouldn't be wearing blue then I think people are missing an important opportunity. The real question isn't whether to wear blue or not but what we want to make people aware of. If people become aware of an association between Autism and a colour we've missed the point and missed a chance to reach people and impact their perception of the world and our place within it.

So what are some things we can try to make people aware of:

People with autism are not all the same colour - This can refer to personality and so forth but it is also true that Autism is under diagnosed in non-Caucasian populations including Aboriginal and Torres Strait Islanders. We are diverse and many of us are proud of who we are and want people to know we have something to say and something to contribute.

Autism is lifelong, but it can be a happy and fulfilling life - I can't speak for everyone but I while I face challenges I largely lead a good, and often very busy, and ambitious life. It has taken me a while to find myself but the journey has helped me to appreciate what I have, what I can do and what I have fought for. I am optimistic about the future.

Most people with autism do want to connect -  I watched a documentary about solitary confinement yesterday. It talked about how loneliness is psychologically damaging. People with Autism

may not want to connect with people  in the same way or as often as others (though some do) but we all need to be connected, be accepted and be loved. Yes it isn't easy. Yes it might need to be on their terms. Yes we make mistakes and overreact to things sometimes. But be patient with us we're trying out best. Trying to connect with people is cognitively draining for us we need to concentrate really hard to keep up with things others can do without thinking about. Our best isn't always on par with what people expect but sometimes it's the best we can do at that time. Please don't expect us to be at 100% of our maximum capacity every single day.

Yes, we do have empathy - this is a day for challenging misconceptions and this one has been refuted before but is pretty common. Part of the issue is that people don't always really understand the definition of empathy. People with autism don't not care. Sometimes we don't notice things unless people tell us. Sometimes we respond to things without outwardly showing much emotion. Sometimes we don't do something because we're afraid of doing the wrong thing. But generally we don't want others to be hurting, we don't want people to feel alone and we do want to understand (respectfully) if we haven't gone about something the right way. People with Autism can have trouble sorting out emotions and working out how to respond but we generally care a lot about justice and feel things deeply with a lot of compassion for those at the fringes.

These are just four examples and there are probably a million others. Whatever colour you are wearing today be aware of what YOU would like people to be that little bit more aware of regarding Autism and the people who live as part of the spectrum.

All the best to everyone who want to make something out of this day - particularly to my friends who I know are speaking at events today. Joel Wilson and Daniel Giles I hope your speeches go really well.

A final thought, so maybe autism isn't always blue but then again roses aren't really all red are they?

The future of autism

Autism lasts a life time, so while early intervention is a great thing it’s also suggested people with autism often need ongoing support into adulthood to fully reap its benefits. A few weeks ago on March 6th the Autism Cooperative Research Centre (CRC) was launched at Parliament House. I was lucky enough to be invited to attend the event. This is an important development not just for small children on the autism spectrum and their parents, but for those of us who are aged far past the opportunities of early intervention programs.

One of the great things about the Autism CRC is that it has focuses on autism at three different stages of life, including adulthood. If we can find solutions and support for some of the issues facing adults (such as employment, social development, independent living skills, self-determination and mental health) it will not only help them, it is likely to also benefit children receiving early intervention as they grow up. The Autism CRC brings together diverse and enthusiastic experts from over 50 Australian and international organizations and centres together with every day people and communities working and living with autism in order to approach issues in a broad and innovative way.

My greatest challenge coming into adulthood was working out who I was and how to accept myself. My Asperger's Syndrome diagnosis formed part of that journey. I am one of the lucky ones. I live independently, attended university, work full-time and recently became engaged. My brother, who didn't start talking to us until he was four, is also doing well. He does volunteer work (which has included teaching himself how to do accounting) while he contemplates whether to study his physics PhD. I have met many others who have skills, talents and interests but have yet to find a way to translate them into the modern workforce. They may experience additional barriers to employment such as sensory differences, transport and mental health issues or haven’t had some of the skills and supports necessary for them to build a business from what they do well.

Autism is for life but it's not a death sentence. We live and try to fit into a society governed by social rules and skills we don’t naturally acquire (and may not always develop even with lots of hard work). But we shouldn't think our value as people comes down to our social fluency. I wouldn't be where I am today if I didn't work on certain social skills from time to time, but if I focus too much on this without accepting myself I end up feeling like a failure and getting depressed. Like everyone we need to change, but we also need to embrace who we are.

Balancing change with acceptance allows you to embrace the joys as well as face the challenges. Both kids and adults on the autism spectrum benefit from being able to explore their natural curiosities and those around them benefit from discovering the beauty within how their minds work. In my life I've had to work hard for some things, but it's helped me to appreciate them. I don't always see things the way others do but that's sometimes an advantage. I sometimes get my kind and easy going nature taken advantage of but that's because I'm hard wired to seeing the good in people and I wouldn't ever want to change that quality about myself. Life can be hard, but it's also worthwhile.

I want a brighter future for my generation as well as the ones coming after us. The Autism CRC provides a great opportunity to embrace the whole-of-life approach and find solutions that will benefit us all and give people the opportunity to find joy and pursue their aspirations. I hope that by researchers listening to the needs of people with autism we will realise new opportunities for better understanding and support for them in education, in the workforce and in their communities.

Pockets of air

I really like being with people. But to enjoying being with people and not feel overwhelmed I also need to spend time away from people. 

This time is my breathing space and lately I haven't been getting it.

 A lot of this time comes in transition space. The time I spend eating breakfast or cooking dinner, walking to the bus stop or on the bus itself. Since I moved in early January all of these spaces have been compromised frequently.

As an introvert I can find interacting with people draining particularly if its in a group. As an autistic person a lot of social interaction requires a crap load of concentration and mental energy to try and keep up and not make a fool of myself or accidentally offend folks. Both of these together contribute to me getting pretty tired and overwhelmed at times and mean that I need quiet space to cope with life and function effectively.

So at the moment a good day is as follows:

-Getting to eat breakfast when no one else is up or there at least aren't interruptions (15 minutes)

-Walking to and from the bus stop listening to music (25 minutes)

-Riding the bus to and from work without there being people I know onboard (40 minutes)

-Being able to cook dinner when I want to without lots of interruptions (20 minutes)

-Reading a few pages of a book, playing my guitar or writing (on the occasions it happens 30 minutes but worth at least 60)

Total - between one or two hours a day without frequent interruption. 

Value: sanity.

Something I wrote this morning...

I don't know what to say

My mind goes blank so I runaway

And then I find out what I wanted to say 

away from the noise

It's too late

Voices blur into giants that make me feel small

I can't put my fears into words so say nothing at all

This fragile voice that I bring it won't weather the storm

Faces smiling at me 

I want to part of you 

feel so apart from you now 

Silence lets stop being friends

I can't really breathe when I'm standing with you

I see the floor come away at my feet

The chasm between them and me

The chasm between them and me