Sunday, 29 November 2015

Five things to tell myself today

Five things to remind myself of today, maybe some of these will also speak to others. Stay strong, stay hopeful and keep growing.

1. It's better to be influential to a few than superficially connected to a crowd.

2. Music is good for your soul. It can help you interpret your own experiences and discover your own secrets.

3. Feelings are not words. You don't need to be able to clear articulate what you feel for it to be real and valid.

4. Excellence and excess sound similar but are not the same thing. It's better to do a few things well than to do many things but not do any of them justice.

5. You don't have to do the same thing as everyone else, and your don't have to do things in the same way or at the same speed. You need to do what's right for you regardless of whether others are able to see and understand it.

Saturday, 12 September 2015

Presentation slides: Becoming Empowered Learners - APAC 2015

Please click on the links below to access my presentation from Friday afternoon at the Asia Pacific Autism Conference.

I will be posting an APAC reflections some time in the next few days.

Wednesday, 9 September 2015

Presentation slides - "Leaving Home & Building Independence" with Joel Wilson at APAC 15

Today, was the first full day of the 2015 Asia Pacific Autism Conference at the Brisbane Convention & Entertainment Centre.

Joel Wilson (who I met through the Future Leaders Program at the last APAC) and I presented this afternoon about transitioning to independent living. We have very different experiences in this area so we hope that what we had to say way practical and useful.

We wanted to make our slides available for people to look at. So feel free to access them via the link:

Tuesday, 25 August 2015

Half stories

Networking is not one of my strong points.

I can get in front of a group of people and make a speech but unless someone makes me a deliberate gap I find it very difficult to work my way into group conversations with any more than 3 people. If the other two people are talkative and extroverted even 3 is difficult.

Last night I got to go to a networking dinner with a small group of fellow advocates. I enjoyed it but I didn't say a whole lot compared to some of the other people there. I left that encounter and found myself reflecting on the fact that even when I got asked questions I didn't tend to finish what I would have liked to say before the conversation moved on.

I got to say that I didn't really grow up with pets but not that I do like animals, that I suspect I'm a "dog person" and would like to have a pet of my own someday and find out. I got to mention that my former significant relationship ended but not to provide an example of why it was a good thing it did and how it might influence where my life is heading. I imagine the second part of that can make the different between coming across as 'sad' or 'disinterested' and coming across as 'interesting' and 'determined'. 

If I only ever yell half-stories do people only ever get to see "half" of me? Do I only come across as "half" a person? Do people just assume the rest of the story is much the same as the introduction, before it goes to a place of wisdom, passion or hope? I imagine that "half" of someone is hard to get to know and feel like you could see yourself becoming friends with that person. I'm sure that none of us wants to appear one dimensional, as we are all vibrant and multifaceted wholes.

When I was little what I remember about my approach to people (particularly those older than me because I wasn't one who really saw people my own age as my peers when I was starting school) was that it was somewhat like a mini cyclone plowing into the middle of someone else's conversation with what I wanted to say. I was told to stop interrupting a lot of times as a kid and as an adult I don't always speak up because I know that by the time I realise there is a gap in conversation that someone else will have started speaking half a second before I can and I will be perceived as rude. 

I listen intently to the conversations I am in, not wanting anyone to go unheard of misunderstood which leaves me less cognitive room to prepare what I want to say. Sometimes this means I will say something related to the conversation three topics ago because that's where that part of my brain is up to and I need to say something of what I had to say on that topic to be able to move on. So the end result of this is that I am very polite in conversation, but that rarely leads to me saying very much. This can lead me to feeling like I've wasted opportunities to get to know people and to be known myself.

I don't get bitter about it or live in some kind of state of constant regret, but I do sometimes wonder how life would be different if my quirks and personality allowed me to be better known through these kinds of conversations. I'd like to think that most people would like me if given the chance to actually get to know me properly.

Sunday, 9 August 2015

The edge

I don't belong here
I'm just an empty space
I hear whispers by they're not meant for me 
Treading water
While people wait and see
If I can save myself and prove that I'm worthy

I'm a picture
That's silent on the wall
I'm something in between a welcome stranger and a threat
Empty handed
I am waiting on my own
To be given room to be part of something real

Saturday, 8 August 2015

Stories and friends to share them with

Tonight I went to a women's event at church. One of the things that my church does is every so often they share a short video of someone in the congregation talking about their life. Tonight the video that was played was mine. Earlier in the week I was filmed and interviewed and tonight I saw the bits of what I said in the interview which were edited together to make a 2 or 3 minute "my story" video.

The gist of what made it into the final video was about how I spent a lot of time not being sure in my identity before being diagnosed with Asperger's as an adult and that it took me a while to process but I ultimately decided that my response had to either reject a part of myself or accept autism as part of who I am and just trust God. I also talked about how it can be really difficult for me to connect with people at church sometimes but I find being part of the worship and really being open in that and singing from the heart helps me feel connected to God and like I'm sharing with and part of the church community.

I didn't get to talk to a whole lot of people after the service because I was helping with supper but people were reasonably encouraging. Several people said they had learnt something from it and one told me that I was brave to share that and gave me a hug. Now some people may question whether that could be patronising, but I choose to see the intent behind people's actions and their desire to be encouraging rather than the particular words they choose to express that. I don't particularly feel brave or intimidated by doing this sort of thing, but I guess for most people sharing something publicly is a lot more scary than initiating a private conversation and confusing something about yourself and who you are to a friend.

This all leads me to reflect on how lite happens in the context of relationship, so struggling with making and maintaining relationships can make feeling part of a Church community pretty tricky. I go to a very friendly and welcoming Church, but friendships don't happen magically or instantly and how accepted I feel within the context of the Sunday service or a Church event doesn't necessarily translate into the rest of the week. Not because of anything anyone has done of failed to do but simply as a result of various realities and circumstances. There are a whole lot of reasons why people with disabilities are underrepresented in the church but describing those adequately would more closely resemble a thesis than a blog post so I won't go into detail about that topic here.

When I was younger a lot of the things I would pray about and ask God for were related to my relationships and connectedness. I wanted to feel like I belonged to a community of peers where I was accepted for and free to be myself. I wanted to have people to hang out with by chatting over coffee or seeing a movie. I didn't just pray about these things either. Over time I've spent, and will continue to spend, a lot of time trying to evaluate and grow and learn how to be a kind, generous and trustworthy person and build and maintain good and healthy friendships. I've tried to as much as I can remove any barriers which might lead to me appearing distant or being misunderstood. I don't want to change who I am in order to make people accept me, I believe that who you are is sacred and is a gift that should be treasured, but I do think its reasonable to learn new skills and make small changes which help people see who you really are. I've been pretty hard on myself at times, done silly things to try and impress people and I have made mistakes and failed more times that I can count. 

For the purpose of this post I'm going to define the friends as people who I talk to regularly and hang out with socially every so often. I don't want to upset anybody by saying I don't feel I have many close friends that I can hang out with and rely on, particularly locally to where I live. I want to be clear that I do realise that it is completely normal and healthy to have different levels of friendship and acquaintance. You don't hang out with or share your deep dark secrets with anyone and everyone.  I also want to be clear that I appreciate all the people who are intentional about saying hello, asking if I have someone to sit next to, including me in things, offering me a lift home,  or sharing a short conversation with me on a Sunday morning at Church, at the supermarket or in the hallway at work. But in the end, relationships are difficult for me and the net result of this is that I can get pretty lonely and isolated. I wholeheartedly believe the Church is a family, but I'd be lying if I said I didn't sometimes feel like the strange cousin that people hope they don't get seated next to at family weddings.

To be known, you need the space, freedom and understanding to be yourself. Trying to keep up with conversations and be careful about what you say and how you say it so that people don't misunderstand or take offence is not easy and can make it hard for people to really get to know me. I am still learning how to be a good friend and how friendships work and are created in the first place. Realistically I think this is a journey that all of us are on to some extent at lease. Relationships require wisdom, patience, generosity and a bunch of other character traits that grow through challenges and over time. I try to be fair and patient in this as well as being grateful for what I do have and all the amazing people I have the privilege to know even if it is quite often only at a distance. Some of the things that make this difficult are things that I could or am improving in over time. Others are out of my control, and I need to be able to accept and live with that regardless of whether other people understand or not . As much as I want strong, close friendships and people to spend time with I want it to be healthy, authentic and mutually beneficial for all and sometimes that means that what I want may not be something I'm fully equipped to handle quite yet.

To be fair there are lots of reasons I may not be the easiest person to connect with. People find it difficult to tell when I am joking, I find it hard to initiate and find appropriate gaps in conversations, I can be clingy without meaning to or take longer than others to realise that someone is bored or doesn't want to talk to me. I also don't drive which can create a practical barrier. Asking for and accepting help is not a strong point of mine. Sometimes I get so concerned about making a mistake and upsetting someone that I don't even try to connect. I know that I've put in a lot of work and made a lot of progress over the years, but I don't necessarily know people over a long enough period for them to see my heart for growth and really appreciate how hard I have worked and how far I have come. I just have to trust that God sees my heart and my intentions and doesn't judge me on how well or badly I read body language or phrase something. 

"In the end, everything will be okay. If it's not okay, it's not yet the end." Fernando Sabino

Saturday, 4 April 2015

Two years on

It has been said that no one else has the right to dictate how another person grieves. It’s also been said that people with autism grieve differently to others. This inference makes sense - realistically it’s widely known that autistic people experience, process and express emotion differently to others. This does not however mean that we feel less, many autistic people have suggested that they feel too much rather than too little and can be overwhelmed to the point of having difficulty working out how to express what we’re feeling. 

As a consequence of this, we can appear to be aloof or detached. We also seem to always have the myth hanging over our heads that we don’t have empathy - which could potentially give rise to people doubting whether have the capacity to grieve or to console others experiencing grief.

Sometimes people even have the misconception that we are somehow cognitively reduced to being emotionless zombie robots (a misconception which is not helped by the media always seeming to question if every non-religiously motivated mass-murderer is autistic despite the fact that autistic people are far more likely to be the victims rather than perpetrators of violent acts).

Two years ago today I experienced my first major loss. My Nana died not long after receiving a cancer diagnosis - which was accompanied by a far longer prognosis of life expectancy than what actually eventuated.  She was admitted to hospital one evening and was gone in the early hours of the following morning. That day was the first time and only time she had ever been admitted to hospital for anything to do with illness.

In January of 2013, about three months before my Nana’s death, I moved from Adelaide to Canberra for my first real (full time) job. If I’d known how soon after this my Nana would leave this earth I probably wouldn’t have gone, or at least would have waited one more year.  Having just started a new job I didn’t have much opportunity to come home. I also didn’t know how little time she would have left. That Easter was the last time I saw my Nana alive. The family came together and she spent most of the day in bed – chemo had left her feeling weak and perpetually exhausted. The last conversation we ever had all she wanted to speak about was how every one was enjoying themselves and asking me to go into her “present cupboard” to see if there were any chocolates to share with the family. She could barely stand but was still trying to take care of everyone else.

It wasn’t long after that trip and she was gone. I was in Canberra and the rest of the family was in Adelaide. I knew my family were feeling what I felt and trying to be there for me as much as I was trying to be there for them bur realistically I felt pretty alone. They had each other, they had shoulders to cry on and people to hug whereas I had people I’d been working with or living with for only a few months and didn’t really feel like I knew or could turn to.

My initial grief was something I dealt with on my own, not by choice but by circumstance. Today, two years on, I find myself in the same position. While grieving alone might be what you expect for someone with autism, for me at least it is something that worked out that way rather than my conscious choice. It’s true that I need some space to work through my emotions but it’s also true that for the most part I would prefer not to be alone.

In the lead up to the funeral, as I experienced those first few days of grief alone before being able to fly home, my biggest fear was that I wouldn’t be able to cry and that I would be judged as a person, and particularly as a woman, if I wasn’t able to show enough emotion. I didn’t really know what to feel, or how best to express it or what I wanted someone to do or say. One thing I did know was that it was really important to speak at the funeral. I haven’t always felt like the most equipped person to know what to do to demonstrate love, but I have always felt like I was good with words and I hoped that I would be able to show how much my Nana meant to me through speaking about it. That my words would make my love clear and paint my emotions in a way that people could see and understand.

My Nana was the person I felt closest to on this earth. If a person could feel like home, she was the person who most embodied that for me. We had always been close. I was the eldest granddaughter and realistically in a lot of ways probably the favourite (though I also feel like we each had the kind of relationship with her that my siblings and I probably all felt that way). She was the person that I looked up to, whose advice I was always grateful for and whose warmth and unconditional acceptance I always felt.

When I imagined what my wedding day would look like, she was the person I always pictured would be smiling at me and saying I looked beautiful as I was getting ready to take the step of starting a family of my own.

I found through the experience of writing and weeping over that eulogy that I didn’t have to prove what I was feeling to anyone. The way I grieved wasn’t so different to anyone else. My brother, who also has an autism diagnosis was the same. He didn’t say much but he was a rock for a lot of people that week, a quiet and unassuming source of hugs for whoever may have needed them. To me it was beautiful how everyone’s way of grieving was accepted. My brother and I grieved differently and went through a different range of displayed emotions, but that was because we are human not because we are autistic.

So where does that leave me today? A day where my loss coincides with what is probably the greatest celebration of hope, life and shared experiences on the Christian calendar. Today, I acknowledge my grief but I also choose to reflect and to be thankful. I am thankful for the seemingly endless school holidays we had spent together as I was growing up and even into adulthood. I am thankful for all the biscuits we made together and all of her childhood books I read. For how she modelled what it was to be an others-focussed person, teaching me to be generous with time and my resources and to be sensitive to and perceptive of other people’s needs.

Today, I find myself alone. My family are together, but I was not able to travel home for Easter this year. I went to Church this morning but other than that I have an empty house, leftover pizza and Christian music playing in the background for company. I am not saying I begrudge this, or that I’m not grateful. But I am saying that if I had the option I think I would have rather spent today celebrating life with others and experiencing the same kind of Joy that my aptly named Nana embodied than spending it alone. Sometimes being alone is a matter of circumstance rather than choice.

So where does that leave my ramblings? I guess what I am trying to share is that my grief is not that different and my emotions are real. That if you know someone who is a bit isolated, whether they are autistic or not, that it can mean the world to them to have someone think of them and give the option of someplace to go on the kind of days where so much emphasis is placed on celebrating with your family.

I’m not trying to make any kind of statement about faith but about humanity. We are all walking through this thing we call life. We don’t have to all do or feel things in exactly the same way but that doesn’t make us any less part of the great sea of people stretched out across this world we call home. We may not always communicate or understand each other but it’s important that people feel valued, and it can be as simply as people acknowledging that others are there and giving them the opportunity to feel connected.