Tuesday, 1 April 2014

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?