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Saturday, 23 April 2016

World Autism Awareness Day talk

Hey folks! Again, been a while. Not long ago I did a talk at an event my family does each year, a high tea to raise funds for down syndrome, and also to raise awareness. But this year, they also did it to raise awareness for autism, and that's what I spoke on. I had a lot of people telling me that the talk was really good, so I thought I'd put it up here with the various links and videos that I used. Hope you find it helpful!

Hello everyone. My name is Brendan - chances are you already know me - and I’m part of the Raymond family. As you’re probably aware, this year we’ve decided to expand today to include not just Down Syndrome, but also Autism. This was a very intentional decision, made because - well, it runs in the family. But also, more and more in today’s world, we’re seeing it pop up and become increasingly common. So it’s good to actually understand it a little.

Initially, though, a couple of disclaimers. Firstly, my experience and knowledge mainly centres around high-functioning autism, or what was known as Asperger’s Syndrome. My knowledge and experience of low-functioning or classic autism is fairly limited - I’m hoping that I’ll be able to cover both in what I say, but chances are there will be more of the former.
Secondly, we found out about autism in about 2012. By that time, I was nearly twenty. When we went to the psychologist, he essentially said that I probably had Asperger’s in the past, and I still thought in much the same way, but I didn’t really have it any more. So that’s me.

For those who are completely in the dark about what autism, Asperger’s, or any of this means, I’ll give you a quick run down.
The big umbrella term they’ve come up with is Autism Spectrum Disorder, or ASD. That covers classic Autism, Asperger’s Syndrome, as well as a couple of others that I really don’t know much about.
“In simple terms, autism occurs when a child has trouble communicating and understanding what people think and feel. This makes it very difficult for autistic children to respond to gestures, facial expressions, touch and even language.”

People with ASD can:
  • Be oversensitive or undersensitive to particularly sensory material (sight, sound, smell, touch, taste)
  • Have repetitive body movements
  • Avoid eye contact
  • Display strong attachment to particular objects
  • Be resistant to even small changes in routine; things need to be the same
  • Be oversensitive or undersensitive to physical touch

There is a lot more than that to it, but that’s some of the main thrust of it. One of the main differences between classic autism and Asperger’s is that autistic people often have developmental delays and difficulties with language; whereas Aspies don’t, and may well excel mentally, but still have difficulties emotionally and socially.

As a note - the last estimate for how common autism was in Australia was about 1 in 100. In America, they think it’s closer to 1 in 70. And if you’re wondering, those numbers are a lot higher than they used to be. And we see that reflected a lot in popular culture - how many TV shows or movies are now centred around this idea of an incredibly smart person who solves the puzzle through their massive brain power, but seems very crazy and just doesn’t get along with people too well? Sherlock Holmes is the classic example, but there are many others. The Mentalist, Bones, The Finder, The Imitation Game, Lie To Me, The Big Bang Theory - even characters like The Doctor, or Spock, can be seen as having traits common to autism or Asperger’s. The nerd is the word, people!

But I want to get rid of some common ideas that people have about autism, or Asperger’s.

Vaccines cause Asperger’s.
This is possibly the most damaging myth that has ever been circulated about autism, or Asperger’s. It started about 18 years ago, with a guy called Andrew Wakefield, who published an article in an English medical journal talking about a link between autism and the Measles, Mumps and Rubella vaccine. But there was an investigation into it, and they figured out that he made up a lot of the data, and was also getting a bit of money on the side for some of the things he was doing. His paper was retracted and his medical license was taken away, but the damage was already done. These days, because of the people that are against vaccinations, we’re starting to see a resurgence in some diseases that had been basically eradicated before.
At the moment, scientists aren’t exactly sure what causes autism. They know it has a lot to do with how the brain grows and matures, and it also has a strong link to genetics. But more than that, they’re still trying to figure it out. But it’s not about vaccines! If you’d like to know more about this, after today, I’ll be putting a link up on the event page and on my profile that links to a comic that talks about this really well.
(Or you can just find the link below.)

Autism only effects males.
This one is pretty common as well. The thing is, it effects more men and boys than it does women and girls, but there are still plenty of girls on the spectrum. The struggle is, a lot of the time they’re better at hiding it! So they can be very much under-represented by the statistics and the numbers. It can also effect boys and girls very differently, and people are more used to how it effects guys, and so recognise it more. But it does also effect females, and we’re getting better at seeing it.

People with autism are emotionless.
Now, I’ve talked about a lot of fairly recent references to autism or Asperger’s in film and TV. But I want to use here an example that isn’t typically connected to either of these, that’s a little bit older. But I think it’s actually a classic example. And I also think it’s something that you’ll know well. 
(The link is below. If you want you can watch all of it, but I just showed it from the 2:47 mark.)
Andy Dufresne. Convicted by the court of murdering his wife and another man she was in bed with. And his face….was expressionless. You didn’t see any emotion there. “You strike me as a particularly icy and remorseless man, Mister Dufresne. It chills my blood just to look at you.”
Aspies and autistic people are not without emotion. Where they can struggle is with understanding emotion, communicating emotion, showing emotion - but that doesn’t mean that they don’t feel anything. It can mean that they don’t understand what they feel, or they don’t show what they feel, or they don’t say what they feel - but that doesn’t mean that they don’t feel.
(Since doing this talk, I've actually watched through The Shawshank Redemption again, and found another great scene that speaks to this as well - it's right near the end, where Andy has just finished his massive time in solitary, and he and Red are talking, sitting down against a wall. Andy talks about how his wife said that he was a hard man to know, and he feels that he drove her away. Another interesting point.)

All autistics are savants.
Often, in these TV shows and movies, these people have ridiculous mental abilities that almost seem supernatural. Whether it’s incredible memory, or powers of deduction and analysis - and that’s what we hear about in the news as well. People creating these incredible works of art from memory, or sitting down at a piano and being able to play anything, or knowing a hundred languages. But savant autism is actually extremely rare, and the exception rather than the norm. This does not mean that many autistic people are not very talented - but being a savant is a very extreme version of this, that is the exception rather than the rule. Here again, I love looking at Andy Dufresne, because he’s not particularly exceptional in how he’s depicted. And I actually really encourage you to go back and watch The Shawshank Redemption sometime, and see if you can spot the little indicators here and there.

I’d like to end by looking at another video. I think a lot of the time, parents of Asperger kids, or autistic kids - or even adults on the spectrum, can worry about something. And with ASD, the main worry isn’t work. I mean, that is an issue, particularly with classic autism, but I don’t think it’s the main issue. The main issue that people can worry about, I think, is relationships. How they’re going to relate to friends, people at work, even their own family - whether a romantic relationship will ever work out for them. Social interaction, and emotional communication are one of the biggest obstacles for people on the spectrum. And you really don’t have to look very far on the internet to find a lot of examples of people who have been or are in a relationship with someone on the spectrum who are finding it really, really, hard. And it is, I’m not going to cotton-wool it. It is hard, and it is difficult. But it can work.

Living with autism can be hard. So can living with someone with autism - feel free to ask any of the girls in my family, I’m sure they’ll have lots of stories for you! But just like anyone else - these people have something to offer. They have gifts, strengths, weaknesses, challenges. They’re people. Different people - both different from each other and from everyone else - but still people.

And that’s what I want you to remember.

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