Tuesday 30 August 2016

Welcome to the Autistic Community

I just came across ASAN's Welcome to the Autistic Community pamphlets. These pamphlets (one for teenagers and one for adults) are intended to be read by newly-diagnosed autistic individuals, as an introduction to their disability and the autistic community.

And what a good introduction they are! They are accepting, discussing difficulties in a non-shaming and non-pathologizing manner, and they explain the social model of disability and the good sides of autism. And they do this all in simple language, so even if the reader has receptive language issues or an intellectual disability, they stand a good chance of understanding these pamphlets.

The pamphlets, along with many other resources, can be found in ASAN's Resource Library. If you want to go straight to the pamphlets themselves, the adolescent one is here and the adult one is here.

Saturday 27 August 2016

My Autism and Me

Thirteen year old Rosie explains what autism is like for her and some people she knows:

She is very creative and unique. My favorite part, though, is her relationship with her brother, who is also autistic and can't speak.

Transcript for those who need text:

(Intro)
My name's Rosie.
I live with my Mum, my Dad, my brother and my sister. And one day I want to be a world famous actress.
I also have autism, which means my brain works a bit differently.
I'm going to take you into my world. (Rosie saying: "Imagination".)
Show you how autism affects kids in all sorts of different ways. (Lenny babbling. Ben saying: "I'm not a logical person, as you may know." Tony saying: "I want to be different, I asked to be different, I am different.")
But that however it affects you, it doesn't have to hold you back. So stick with me, and find out what it really means to be autistic.
(My Autism and Me)
The kind of autism I have is called Asperger's Syndrome, and sometimes it makes me see things a little bit differently. I get very sensitive, and I can't control it. And sometimes it's a bad thing because all the other kids are laughing when I'm, just, crying, screaming at things that they're not.
Every single thing, even things that aren't living, has a personality, and a life. If there's two pairs of shoes, and I pick one, I feel like the other pair would feel left out, or something. I don't like saying certain words because they just make me feel all tense and unhappy.
A lot of people with autism have found it sometimes mixes your senses up a little bit. I can feel words. I used to describe a word as being slimy, or prickly, because that's what it tasted, or felt when I said it, or when other people said it. Quite a lot of people didn't have much understanding about it. They don't mean to be mean, but they just hurt my feelings because of my sensitivity.
So what exactly is autism? People with autism have problems relating to others, and making sense of the world around them. Scientists know it affects the way the brain works, but they don't know what causes it. Boys are much more likely to be autistic than girls, and it can run in families. Autism isn't rare - one in every hundred people is autistic - and it comes in all shapes and sizes.
(Boy saying: "I get very stressed in crowds, um, I have anxiety issues." Boy saying: "I'm sometimes easily distracted, easily annoyed." Boy saying: "It's bit difficult for me, uh, with the how to conversation. Uh, I need to try think very hard about it." Boy saying: "If someone does touch me, I say 'can you please not do that again?'" Boy saying: "I sort of feel sometimes like people will try to hurt me." Boy saying: "It feels, uh, uncomfortable at, uh, when the people's crowded." Boy saying: "I'm not really normal, but it's kind of, I can't describe it, I'm sorry, I can't really describe it.")
Although it can be a problem, I wouldn't swap my autism for anything. It makes me who I am. I just wouldn't be the same without it. For instance, I think it gives me my imagination.
It also gives me my incredible skill at remembering hundreds of impressive facts. (Rosie saying: "The inventor of the waffle iron, didn't like waffles. Spain literally means the land of rabbits.) Some people might call my obsession with facts a bit boring. I call it focus. And I'm not the only autistic person who thinks like this.
(Tony's Story)
Tony's autism expresses itself with major obsessions. At the moment, it's a role-playing game called Warhammer, with loads of complicated rules. And having clear rules about everything makes Tony feel good. (Tony saying: "Remember, I've got the objective so far, because I'm within three inches of the buildings.")
(Tony) Most people, when they do a hobby, they normally do it for a period of, maybe, a year or two. We do it for nearly a decade.
(Tony's sister Jasmine) Lots of autistic people like to get interested in a hobby, and that is what Tony is like with Warhammer. He absolutely loves it.
(Tony) It's a strategy board game including little plastic minions that you have to build, and paint, and then you get to play with them. It's really epically fun. (Tony saying: "Green, for the Ork skin.")
(Jasmine) He's really good at painting, he's really good at building. That's all he likes to do. (Tony saying: "I get four attacks each, on the charge, which is awesome!) Some autistic people like to know everything about a subject, and Tony knows all of the rules about Warhammer. (Tony saying: "They're complicated and hard. Basically studded infantry moves six inches..." his voice overlaps saying multiple rules.) If he doesn't know all the rules then he can't play, and if he can't play, he gets really angry. (Tony saying: "Normally when I'm playing the game I don't talk, I think, I plan. I'm working, I'm plotting, it's really fun.")
(Tony) Well, just like people like organizing stuff, I organize stuff, because otherwise everything will be out of order and hectic. I color-code all my models to make sure they're not mixed up, I also keep special units separate from the core units. They have to be in the same box, same place, I just want everything to be organized.
(Jasmine) If you drop something and put it back where it could belong, he'll know, because he'll just measure it. (Tony saying: "What are you doing putting it there? You don't put it there, you put it next to, no, you put it, you put it, yeah, here.") Tony finds it hard to make friends, because he doesn't really know how to say to people 'can you be my friend?' (Tony counting dice, saying: "Can I borrow three dice?")
(Tony) The reason I don't have any friends is because my friends are little plastic miniatures and I'm just an anti-personnel magnet. I just feel like models, they can't talk, they can't move, they can't do anything, but they keep me company. I just don't feel lonely with them around. I am perfectly normal, it's everyone else is weird. The entire world's weird, I'm fine.
(Rosie) Like many children with autism, Tony doesn't find it easy to socialize. But his hobby has helped him to make friends.
(End of Tony's Story)
There are lots of different types of autism. Some people, like me, have a much milder type. But others have a much more severe sort. And one of them is my little brother. (Lenny babbling.) This is Lenny. He has classic autism. Even though he's nine years old, he can't really talk, and we think that he won't have much independence, and he'll be looked after all his life.
At the moment, Lenny is nesting on the TV. He grabs some throws from the surface, stuffs them down there, and then sits on them, eating gogurts, which is yogurts. He likes things in certain places. He puts all the throws behind the TV, he turns the sofas over. (Lenny babbling.) He fills the bathroom with bubbles, and he likes it that way, but we don't, and we don't see why he likes it that way. (Rosie saying: "Hi, Lenny", Lenny babbling in response.) He feels really stressed if the doors aren't shut. He can just sense the doors being open. (Rosie saying: "Right, back to the bath now.")
(Rosie and Lenny's mother) A lack of understanding can be a real difficulty because Lenny looks completely normal. (Lenny babbling.) And there's only his behavior, really, that gives a clue, to the fact that he has a disability. (Lenny babbling.) And it can often seem like that child's being naughty or throwing a tantrum, when in fact they're just reacting to some kind of stimulus or they're unhappy and they're unable to express any needs.
(Rosie) The best thing about my little brother is absolutely everything. Look at him! He's absolutely brilliant!
(End of Lenny's Story)
Because it's not always obvious that people have autism, some people just think we're mad or being naughty. This lack of understanding is one of the worst things about being autistic.
(Ben's Story)
(Ben) My name is Ben. I was bullied at school because people didn't understand the fact that I had autism. Autism, to me, enlargens one of your emotions, it makes it a lot more potent. For me it made my anger a lot bigger, and when I completely lost it, I would sort of lose my vision. I'd be able to hear, but I wouldn't see - I'd be seeing red, you might say. And next thing I knew, I'd be informed by somebody that I attacked somebody or done some sort of damage. Sort of like Viking Beserkers. I'm twice the trouble of them.
People figured I had an anger problem, they continuously taunted me, goaded me, most of them called me a bear. I was feared, I was hated, it wasn't fun. Imagine going to school every day and not having a single friend. I was very depressed, I didn't enjoy life, I'd realized that it wasn't going to get any better. I was very desperate for any sort of help. I didn't want to live, I actually did not want to live at that time.
(Text saying: Ben's story isn't unusual. Half of all children with autism are bullied.)
Well, when I started school, I didn't really go to me lessons, I was too afraid. After awhile, I was starting to get more confidence, and I came down with support from the LSU. The LSU stands for Learning Support Unit, and it has really helped my life. If you are worried or panicked or something bad happens, I can always go straight up there and attack a pillow or something to get me anger out. Amidst all the chaos, you find sanctuary in the unit if you're autistic.
Just having support has helped with everything else. It's made me more confident, made me calmer, and now, I am able to go down to nearly any lesson given without any support. I've become more sociable. I've learnt more about the outside world than just looking at the window. I've got more things to talk about. I can relate to more. I used to think that every time I got near somebody, they would call the cops on me. But I've got friends now.
(Ben's friend Ryan) Ben, I find an interesting person, in fact, and quite entertaining.
(Ben's friend Anya) He sees things differently, so he brings different points of view that you wouldn't necessarily think of yourself.
(Ben's friend David) I'd probably say funny, quite serious as well sometimes.
(Ben) I think they think I'm fairly okay, someone to watch out for, but still fairly okay. Clever, occasionally funny, and a bit mad. But I'm quite happy to be called that. I'm just happy to have friends.
(Rosie) Ben is just one of half a million people with autism in the UK. And like him, many of them have a difficult time. Nearly three in every four children with autism feel unhappy and anxious about things. It's not because they're autistic, it's because they're not getting the help and support they need. And things don't get much better when we get older. In fact, only one in every six people with autism end up with a full-time paid job.
When I grow up, I want to be a famous actress, hairdresser, Dalek, and I don't see why my autism should stop me.
(My Success Story)
One thing I've learned is that just because I'm autistic doesn't mean I can't succeed. I love drawing, and last year my drawings were published in a book my Mum wrote. I did nearly twenty illustrations, and this one's my favorite. Lots of people wanted to know about the book and my drawings. I even appeared on the one show to talk about it, which meant sitting next to Robson Green and chatting with the presenters. (Presenter saying: "And great illustrations!" Other presenter replies: "Yeah, your own pictures, yeah." Rosie thanks them.)
I've made this film because I wanted to tell the world about how many autistic kids get bullied at school, and then have a really tough time getting jobs when they're older. I wanted everyone to see close-up what it's like to live with autism, and I hope you've enjoyed meeting Tony, Ben, Lenny and me. Autistic kids can come across as a bit different, but it's well worth getting to know us. Living with autism can be hard sometimes, but it makes me who I am. Autism makes me different, but it also makes me unique and special. ('Born This Way' by Lady Gaga plays over the credits.)

Tuesday 23 August 2016

Dear Future Mom

In response to a letter from a scared pregnant woman whose child had just been prenatally diagnosed with Down Syndrome, a European Down Syndrome group released the following video:

It features 15 people with Down Syndrome, from many different countries, talking about what people with Down Syndrome can do.

Sunday 21 August 2016

Sesame Street and Autism

Have you seen the Sesame Street and Autism initiative? It's all about seeing the amazing in every child, autistic or not. My favorite bit is the Amazing Song. To hear those great words spoken over top of videos of kids acting autistic and having fun - it brings tears to my eyes!




Really, you should check out the whole thing. It's great!

Note: if you want written lyrics for the Amazing Song, you can find them in PDF form here.