Finding Hope“Is Autism A Gift?” (At New Scientist Live)
Posted on September 22, 2018
A while back, my brother told me about an upcoming talk called ‘Is Autism A Gift?’ Naturally, I was curious. And slightly sceptical. For me, Autism has been one struggle after another but I’m aware that that is likely due to the late diagnosis rather than the actual Autism. But who knows. So I was really intrigued as to what the talk would be like.
The talk was part of New Scientist Live, which is a huge event – a festival, really – all about “ideas and discoveries for everyone curious about science and why it matters.” I couldn’t describe it better than they do. It’s full of stalls, interactive experiences, and stages for talks on all different subjects. Had I not had previous engagements on the other three days of it, I would’ve loved to stay longer and explore more. I was almost giddy with all the potential for learning.
The speaker was Dr Anna Remington, the director of UCL’s Centre for Research in Autism and Education and a leading authority in the area of superior abilities in Autism. And she had me from the beginning: she asked how many people were autistic or had a personal connection to Autism, almost the entire audience put their hands up, and she said, “I personally feel that you are the experts.” She was warm and enthusiastic, the perfect combination of fascinated and respectful. I liked her straight away.
She started off with a brief outline of Autism, of the social aspects (struggling with non-literal language, eye contact, managing relationships) and the non-social aspects (the need for routine, areas of intense interest, sensory sensitivities). She also talked about the language around it, about using ‘autistic people’ rather than ‘someone with Autism,’ because so many people feels that it’s so intrinsic to their identity. She quoted someone she’d worked with: “You can’t separate the autism from me. It’s not something I carry around in a bag with me, it’s something that’s absolutely part of my personality and identity.”
She said that so many talks are about the difficulties of Autism but that she wanted to talk about some of the positives, not the savants but the areas where autistic people are shown to excel. She walked us through some studies – some visual tasks and some auditory, done with both children and adults – and showed us how the groups with autistic people did significantly better.
She introduced the idea of ‘perceptual capacity’: “The amount that we can process at any given time is known as our perceptual capacity. Everybody has a slightly different perceptual capacity and whether we process something depends on whether our capacity is full up or if there’s still room left over… Now the crucial thing is that we have to assign our whole capacity at any given time. You can’t assign just part of it. So, if the task that you’re doing doesn’t fill up the whole of your perceptual capacity, then anything that’s left over will automatically process something irrelevant around you.”
I found this whole concept fascinating. This is the idea behind why people listen to music while working or doodle while talking on the phone, filling in that left over capacity with information that doesn’t interfere with what you’re trying to do. I have always had stuff playing in the background (audiobooks, movies, TV shows – not music because I get distracted by thinking about the mechanics of the song and of the lyrics) and was always told that I couldn’t possibly do whatever I was doing well with that much ‘distraction.’ So it was very satisfying to know that I’d been right all along. If you want to know more about this, this article is very helpful.
She finished with why this research, why these findings, matter and how they can be applied in education and employment to improve the experience and opportunities for autistic people. The research is really exciting and I would love to be involved in some way; as I mentioned in my post about taking part in Autism research studies (here), there’s something really empowering about it, about feeling part of change. I spoke to her about it after the talk and she was absolutely lovely.
My one negative about it all was the level of background noise, this constant drone of indistinguishable voices. It made it difficult to hear the talk and it’s one of the things that I’ve found really drains my energy. But, although it completely wore me out, it was so worth it. It was such a positive experience and I’m looking forward to seeing where this research leads.
A First Attempt at Bullet Journalling
Posted on September 15, 2018
As you guys have probably guessed, I’m a stationary enthusiast and over the years, I’ve gone through many, many notebooks and diaries and planners. I’m pretty picky about the kind of books I like and that’s probably why I’ve never found a planner that really works for me. The layout didn’t work or the writing spaces weren’t big enough and so on. So I was always on the lookout for the right one.
I started looking into bullet journaling after seeing photos and videos of bullet journal ‘spreads’ on social media: pages to track spending, sleep, mood… As well as monthly and weekly logs to keep track of what they were doing. It seemed to be a way of creating a very personal, tailored planner and that appealed to me, although I’m definitely not artistic enough to compete with the ones I’ve seen on Instagram and YouTube. But since it seemed to work for so many people, I thought I’d give it a try.
A lot of thought went into the bullet journal format (the official website is very informative) but in short, it’s a flexible system to “track the past, organise the present, and plan for the future.” Most people seem to use dotted notebooks (like the ones that Leuchtturm make) and dedicate pages to calendars (future log, monthly log, daily log) and trackers (habits, sleep patterns). I’ve found this incredibly helpful so I thought I’d share how I use it. Maybe this would be more easily done in video format but here we are.
At the beginning of the year, I bought a Leuchtturm notebook (dotted, navy blue, A5 – available here) and got to work. I looked at photos on Instagram and watched a tonne of videos on YouTube (AmandaRachLee is my favourite) and that really helped me to figure out what bullet journalling could be for me. I set up the index at the front and created several general spreads, including my new years resolutions, all the birthdays in the year, books to read, and things to watch. Carrying all of this around is so helpful and it has definitely made me more organised. And motivated.
One of my favourite spreads is the one for blog post ideas (and it actually spilled over into a second spread because I ran out of space). I find it so inspiring and motivating to look at. I’ve always been a list maker and I LOVE being able to tick things off a list; I’m always more motivated and productive when I’m working from a list. Having all of these ideas in one place has made blog writing much more efficient.
Many people do a monthly mood tracker but I did one for the whole year because I thought it would be easier to detect any trends in my mood and compare month to month. If I could do it again, there would be less categories. It took a while to figure out how broad each emotion had to be and as someone who feels emotions (and their subtleties) very strongly, it was very easy to create more categories than I necessarily needed. And I think a smaller spectrum of colours would make the whole thing clearer.
I found this particularly helpful when trying to judge my reaction to a medication: I could literally track my mood through each dose increase and assess how helpful it was. Sometimes it’s easy to get lost in one side effect or judge it based on the most recent feelings rather than the overall experience. So it was really helpful in regards to that.
Now to the month-to-month, week-to-week stuff.
It’s pretty standard to do a monthly log: a month at a glance of sorts so that you can see everything you’re doing during that period of time.
One thing that I love about bullet journalling is that you can refine your style and system as you go, to make it more useful to you. I went through several different layouts before I found the one that really works for me, at the moment at least. And you can be as creative as you want or feel capable of being. I’m not very artistic – in the drawing/painting sense of the word – but it’s been fun (and oddly empowering) to try my hand at something I don’t usually do.
Again, it took me a while to find a weekly set up that I liked. But I really like the one I’m using at the moment. It’s simple and quick to fill out and not overwhelming to look at.
The official bullet journalling style involves a system of categorising all the information (tasks, events, appointments, etc), checking off tasks, ‘migrating’ them to a later date… Personally I found it overcomplicated and just not necessary. I know that there are people who like it, people who don’t, and people who have either simplified the official key or created their own version. But this is what’s great about this whole format: you can tailor it to what you need.
And lastly, I’ve recently started using trackers as part of my monthly set up. I kept the list of tracked things short so that it was actually doable and I ended up finding it really useful. Having that list of things written down made it easier to remember to do them and to build the habit. And as I said, I love ticking things off a list so the idea of filling in the boxes at the end of the day was really motivating.
So I hope this was interesting. If any of you guys use bullet journalling or any other system for organising your life, let me know what works for you!
Remembering Claire Wineland
Posted on September 8, 2018
I couldn’t not acknowledge that Claire Wineland died on Sunday. I still don’t really know what to say; my emotions are all over the place. But I did want to say this: I might not have known her in the traditional sense – we never met and our relationship consisted of a few interactions on Twitter – but she deeply inspired me and therefore meant a lot to me. I will miss her tremendously and my thoughts are with her friends and family. She was so, so special and her impact is on-going, like the ripples you see when you throw a pebble into a pond.
So, with all of that said, I wanted to share one of her TED talks. She talks about living with Cystic Fibrosis, how hard it is, and how living with an illness can affect your perspective, as well as how people treat you. She’s an amazing speaker.
“You can have a painful life, you can suffer, you can experience what it feels like to be a human being – all those messy and gross emotions – and yet you can make a life for yourself that you are very, very proud of.”
“I wanted to share the fact that you can suffer and be okay. You can suffer and still make something. That the quality of your life isn’t determined by whether you’re healthy or sick or rich or poor. Not at all. It’s determined by what you make out of your experience as a human being, out of the embarrassing moments and the painful moments. It’s what you make and what you give from that place.”
She talks about reading a book by Stephen Hawking as a young teenager and learning about space and suns and black holes. Her enthusiasm makes me laugh out loud (and then cry). And that led her to learning about Stephen Hawking himself and the disease he lived with and all that he contributed to society anyway. He was her first role model.
She talks about how she questioned why she had to work so hard just to stay alive and how she was desperately looking for something to contribute, something to give her life meaning. She wanted more than just surviving. And then, at thirteen, she almost died and went into a coma that no one thought she’d come out of. But she did and she was just blown away by all the support she received. That made her realise that that is not the case in many families living with Cystic Fibrosis and so she created her foundation, The Claire’s Place Foundation, to assist those families.
Six years on, she was struck with the realisation that she’d become the person that she had been looking for, someone to look up to who was sick and still contributing to the world. She was using her experience to give something and she was living a life she was proud of, that thirteen year old her would be proud of.
“And that’s all that we can have in life. Because the truth is, it’s not about being happy, right? Life isn’t about just trying to be happy. Honestly, happiness is a Dopamine in the brain. If I was to sit here and tell you all to just be happy, I’d just tell you all to go smoke a joint and listen to Bob Marley and just call it a day. We don’t need any of this TEDx stuff, you know? Life isn’t about being happy. Life is a rollercoaster of crazy emotions: one second you’re fine and the next second you feel lonely and despair and like nothing’s ever gonna be okay again. It’s not about emotions; it’s not about how you feel second to second. It’s about what you’re making of your life and whether you can find a deep pride in who you are and what you’ve given because that’s so much more impactful, so much deeper than whether you’re happy, or content, or joyful. It’s okay to feel pain. In fact, if you can actually experience it without judgement, without, you know, trying to fix anything. Nothing’s wrong with any of you. Nothing’s wrong with me. I don’t care that I’m sick. At all. Genuinely. If a cure came tomorrow, I wouldn’t care. Because that has not determined the quality of my life. I’m not trying to fix myself. My suffering has given me so much, and I’ve been able to make something and give something to people from it.”
In some ways, it’s hard to watch because it’s devastating to see her so engaged and dynamic and thoughtful and funny and know she’s not here anymore. It’s hard to watch her talk about surviving the odds, surviving the coma she was in at thirteen, knowing that she didn’t survive the odds this time. But at the same time, this video is a tiny piece of proof amongst all the noise that she WAS here, that she WAS so engaged and dynamic and thoughtful and funny.
As I said, I will miss Claire immensely but I’m incredibly grateful to have videos like these to watch on the hardest days.
Finding Hope 