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