Monday, 21 November 2016

Things I wish I knew... growing up as a person on the autism spectrum

Things I wish I knew... growing up as a person of the autism spectrum

This list comes from a talk I gave in the local area last month. I was given the topic of "things I wish I knew" by the organisers and this was the list of 20 things I came up with and spoke to. 

1. You’re brain is wired differently from other people
2. Sometimes before telling me things I wish that people would listen and try to understand...
3. People tend to value what they’re good at not what you’re good at
4. Team sports aren’t the only kind of sport
5. Nobody’s a stereotype
6. Not everybody hurts you on purpose
7. Not all questions have answers
8. It’s okay to ask for help but not everyone will necessarily be helpful
9. People are much more likely to point out what you’ve done wrong than what you’ve done right
10. When it comes to self-improvement you can only do one thing well at a time
11. You can’t fix yourself and your value isn’t conditional on you always trying to
12. You don’t have to do things at the same speed or in the same way as other people for them to be worthwhile
13. What you can do and what you can cope with changes constantly
14. How to tell when you’re doing too much and how to work out your emotions
15. Bad feelings don’t make you a bad person 
16. You can’t find or express your own opinion when you’re feeling overwhelmed
17. Working out who you are and what matters to you is one of the most important things you will ever do
18. You can do most things you set your mind to, but not all at once or without taking care of yourself
19. No one is truly independent
20. Other autistic people can be a really accepting and helpful community

Friday, 4 November 2016

To choose inclusion is not perfection

They say that life is a series of choices. One choice that I try to make often is to include people. I want to walk towards people more than I walk away from people. I want to see value in others whether they can see it in themselves in a given moment or not. Sometimes this can be a painful way to live.

Including people isn't always easy. You don't automatically know what people like and are comfortable with. You don't always know how much to push them or when to give them space. It can be hard to tell when someone's "go away" means I need you. As autistic adults we often tell people to "just say why they mean" but when it comes to emotional stuff we can just assume that the the person knows how we feel and what they've done that we're not happy with them about.

Another thing to remember is that you can't assume that people saying no to something on one occasion means they don't want to be invited again. Unless they actually tell you not to invite you to things (and not just in a moment of personal meltdown) or that don't like whatever it is you've invited them to the having an attitude of inclusion means not taking no for today's invitation as no forever. 
I know that people can't always say yes. But I also know that doesn't mean they don't want to be invited. Sometimes people just genuinely appreciate simply being asked.

Groups can be really tough for autistic people, but sometimes the alternative is leaving some people out. And for those people then there isn't an alternative where they get to connect. This isn't really acceptable to me. As someone familiar with loneliness I hate the idea of anyone experiencing rejection, and particularly at the hands of who know what it's like themselves. I'm all too familiar with the feeling of being trapped at arms length in some kind of metaphorical invisibility cloak which means that people can only see the parts of you they don't like of can use to justify why connecting with you is too hard. 

The other issue with groups is that sometimes including one person means making another not feel heard or respected. This is tricky because by one person may accuse you of not respecting them or undermining their choices because you chose to invite someone else they don't  want to be part of the group. It can be hard to remember that your choosing to invite another person to something you're organizing doesn't invalidate the authenticity of your prior invitation to another person, even if they choose to be offended. 
Including people often has a cost. For me the bigger the group is the less opportunity I will have to speak. Even in a group of three I can find myself being cut out of the conversation either entirely or mid sentence  often enough for me to feel like there isn't room for what I want to say or for me to show people my true self. The experience of not feeling heard can be very triggering and difficult for me sometimes, but I try to remind myself of my own values and to embrace my temporary silence as a sacrifice to the collective good.

Groups can also be costly in terms of draining your social energy battery. Often at conferences I will allow my reserves to run far lower than normal because I don't want to kiss the opportunity not only to connect myself but to see and facilitate others having a sense of connection and community. The price for this is deferred to the days and possibly even weeks after conference where only disengaging from the social world for  a while will allow me to recover.

One definition of a friend is someone who sees your faults and likes you anyway. I don't know about you but I haven't found a whole lot of these people around the place. Relationships aren't perfect and may not be permanent either. What I think stays though, or maybe grows, is our attitudes towards people and the values we try and embrace in our interactions with others. 

I am far from a perfect friend, but I do try and be a genuine one. 

I care about others feelings, although like everyone I am sometimes distracted by my own. 

I try to make time for others, while being aware that I too have needs. 

I try not to expect perfection of myself and in turn not expect it of others.

I try to learn from my mistakes and not make assumptions. 

I try to be soft hearted even in places where I've been hurt and let down. 

I try to really listen even to people who don't make the effort to really listen to me. 

I try to walk towards people, and invite them to be included even if they sometimes say no. 

That is all I can do - even when people dismiss me for not being inclusive or perfect enough.

Saturday, 16 July 2016

Identity and Independence - Presentation to WA Autism Research Open Day July 17, 2016

Introduction and pokemon joke.

I'm talking about identity and independence today because for me, and I suspect many other autistic people growing up and trying to find their path through life and place in the world, the process of working out who you are and how to get there can be a challenging and confusing one. As the Vice Chancellor said earlier autism is a lifelong journey. Identity is knowing who we are as well as finding our place in society so we can live a good life which is as fulfilling, happy and independent as possible. This is not only fundamental to the aims of autism research for adults but also to the hopes and aspirations of parents and of autistic people regardless of their stage of life.

In the ways that society measures these things I am arguably very successful. I have completed university am employed full time in a professional job in the public service in Canberra and live on my own in a different state to my family. But I have also experienced many challenges and don't necessarily do things in the same way as my colleagues and peers. I've been fortunate that I've been able to be very open about my autism at work. I am valued and respected by my colleagues and superiors but I also can feel very isolated and find it difficult to connect with my local community particularly when at least up til now one of the challenges I have yet to master is driving a car.

My identity as an autistic person and as a part of the wider autistic community transcends my local context. I know that even if I can sometimes feel lonely  and misunderstood where I am that I am not alone and that there is a diverse range of people out there who can understand and share some of my insights, triumphs, concerns and idiosyncrasies.  I call myself autistic because it is a valued part of my identity, it colours how I think and experience the world. I am not able to separate it out or remove its influence both its advantages and challenges from who I am.  Being frustrated at something I cannot separate from myself is unproductive and only would lead to regret and damaged self worth. Whilst it is good to learn, grow and challenge yourself you also need to accept and love who you are including your limitations. Whilst I would like to be better at somethings like being able to read social cues and avoid committing faux pas or making people uncomfortable with less conscious cognitive effort I would not like to lose my creativity, my sense of justice, my work ethic, my love of learning or any of the other bright and colourful threads of talent that autism has helped me cultivate. 

The language people use in this area has been a longstanding heated debate  with recent research by the National Autistic Society in the UK failing to find any real consensus in the community's preferences as a whole. Some prefer identity first terms like autistic people while others prefer person first language such as people with autism. The NAS survey found autistic people themselves are more likely to refer to themselves as autistic. Both groups in my experience choose the terms they use to try and bring value to people. In my opinion the language itself is less important than the attitudes and respect behind it. People should also remember to respect an individual's choice about how they want to be identified themselves even if it contradicts your preferences of how autistic people should be referred to in general.

A person's identity belongs to them. Other people we interact with influence who we are and what we become over time but no one has the right to say who you are or dictate how you identify yourself. There's a collaborative book thats been written by the Autistic Self-advocacy Network in America called "Loud Hands Autistic People Speaking" that talks about a lot of these ideas of identity, independence and acceptance, and I'd just like to share a quote from one of the contributors Penni Winter: 

"The core of Autism is not an emptiness, but a unique way of being, of thinking and feeling, of relating and reacting to the world. In itself, this way of being has as much value, as much of a right to exist and to reach its full potential, and as much to contribute, as being neurotypical has. It is simply different. We are human beings. While I do believe that yes, we have the responsibility to act as responsibly and as politely as we can towards our fellow humans, we also have the right to simply be our true selves, in all our eccentric glory."

At 28 I would consider myself well on the way on the life long journey of finding idenity and fulfilling my purpose. That is the things I feel passionate about and being meaningfully connected to others

I was the oldest of four children in a family that moved around a lot. My parents are both quite shy so there were not a lot of expectations about social interaction outside the family. As a young child i was happy and not seen as having any real challenges but just as being very bright and very serious. In the first few years of school I didn't have many friends but I was wasn't really interested in making them. In my mind school was about learning not about other children and all I wanted to do was to learn.  I was very perfectionistic and would struggle with things if I ever wasn't the best or close to the best at something I valued. Except for sport which I knew I was hopeless at but also not interested in because I didn't think of it as a real class because there were no books and tests. I just saw it as a way for other children to get rid of extra energy so they could concentrate on more important things like maths or reading.

Life for my family became more stressful when my youngest brother was born. He was preverbal until he was four and communicated by pointing and screaming up until then. He loved lining up pegs on the clothes airer, was afraid of rain and wind and would only wear tshirts with thomas the tank engine and bananas in pyjamas on them.  The kindergarten where we lived at that time specialised in speech and hearing disorders so he was diagnosed with a language delay and started kindergarten and school and year later because of this but he would not be diagnosed with autism until he was in year 7.

At this point I was in early highschool and had become a lot more interested in connecting to my peers and confused about the increased social demands that come with adolescence. I wanted to fit in but didnt know how. I also had very poor judgement around peoples intentions and about identifying the right people to hang around with. Looking back i could have had a really close group of friends but at the time i was not able to tell which kids were the nicest and most accepting ones. 

A piece of career advice that guided me as a teenager came from my Year 9 German teacher what to ask yourself three questions. What do you like? What are you good at? and What has good job propsects?

At fifteen I moved to Adelaide to be a founding student of the ASMS connected to Flinders University. This meant I started the transition to independence really early and had more time to learn and grow in this area incrementally rather than being thrown into an expectation of complete independence all at once. At this school all of the kids were motivated to be there. I was still one of the more serious students and not quite as social as a lot of my peers but i was also well respected by my teachers and peers and had lots of opportunities to be involved in the school including being on the student council.

This school exposed me to many different areas of science I liked and things I was good at.  But the number of choices and things that people thought I could do made making any decision about university very confusing. I felt like I was meant to find the perfect solution and know the right direction to go and if I didn't, then I would have failed when a lot of people believed in and were counting on me. At different times at that school I thought I wanted to study engineering, statistics, public health, space science, pharmacology and probably many other things I can't remember now.

It was at this age that my brother was finally diagnosed. My parents are not keen on labels but they were in a little bit of a battle between his primary school and the high school in my town. He had been going over to study year 10 maths at the high school who were keen for him to go to high school full time and be back in the same year level as other children his age. The primary school however was concerned about his social skills and that he would be further behind. In the midst of this he was formally diagnosed.

My parents came home from his appointment and after confirming my brother's diagnosis handed me a list of autism symptoms and asked me to read it. They told me they thought they had found out more than just about my brother and that they suspected I had Aspergers Syndrome. But they were not keen to go through the roller coaster of diagnosis again with another child and felt that all it would achieve is labelling me. I wanted to know either way because I was questioning my identity and the source of my social awkwardness but I was not able to really communicate that inner struggle of how important it was for me at that time so I just kept going with this question above my head that I didn't have a clear answer for. 

I was really successful at my school. I had a good reputation, good marks and very involved in extracurricular activities. I felt like everyone expected me to succeed in life and in science and quickly. But I was overwhelmed by the choices in adult life and confused about who I was and what I wanted to do. This led to me being not only confused but also anxious and depressed.

I had trouble working out what I really thought and felt and how to separate that from what other people said and the pressure I perceived as being put on me. I took 2 attempts to complete university and on the second attempt i was more prepared and had a clearer idea of what I wanted to do. I studied psychology and did a subject less than a full courseload to ensure I was able to cope. 

It was during this second attempt at university that I got a diagnosis. I was old enough to refer myself and in a position to pay for it. I went and argued why I didn't have it but walked out with an Asperger's diagnosis that I wasn't quite sure what to do with. The people I initially told had quite negative responses which put me off accepting myself and telling people. After a year I decided that I could either let it be something that held me back or do my best to accept it and use it to make the world a better place. I responded to an Ad in the Autism SA news letter for consumer representative for a review of autism services. I was selected and this experience got me interested in public administration and introduced me to both the world of advocacy and to other autistic adults.

I also moved to a boarding college around this time. This would have likely been a terrible experience at 18 from a sensory and social judgement perspective, but was great at 23. Opportunities to connect came about because people were easily accessible. Opportunities talk to people at meals or knock on someones door and ask if they want to play a game were both numerous and straightforward. It took a while to settle in, but it turned out to be one of the best choices I could have made. There can be silver linings even in tough times, and  I actually got offered a job in the college kitchen because I got to know the staff in the kitchen while I was still finding my place and somewhat isolated. After working there for a while I was also able to convince them to give my brother his first job. He stayed at the same college throughout his undergraduate degree and is now also living independently and doing a PhD in physics.

Even with how much kore i knew about myself snd how much i had grown I had doubts about finding a job - between uni attempts I had applied for hundreds of jobs without success and the statistics about adult autistic employment seemed pretty scary. So I applied for government graduate programmes  a year early in the hope of learning enough the first time to be successful in the second year and surprised myself by getting it first try when i hadn't even finished uni yet.

I moved to Canberra to work full time which I've now done for 3.5 years, first living in sharehouses then eventually on my own. I make choices to allow myself to be independent as possible. I live where I can walk to my job to the shops and to my church. I rarely need a lift anywhere usually only to the airport when I'm heading to an autism conference or home for Christmas or to the post office to collect a package I can't carry on my own. I am also studying a Masters of Disability Studies by correspondence and have been involved in public speaking and leadership programmes related to autism including particpating in and consulting on research.

To me independence is about being able to make choices that let you be who you are and be fulfilled regardless of if you need help or not and identity is about accepting all of who you are and about knowing what motivates you and pursuing it for me it's problem solving, being useful and connected to people, as well as learning how people's minds work and hearing their stories. I use this knowledge to guide my choices about where my life is heading and what areas i focus on and try and grow in. My success has partly come through accepting who I am and that doesn't mean I can't have a box full of sensory toys and a weighted blanket in my wardrobe.

I'd like to share some things I've learned and thoughts I've had about this journey.

You have to know what you need to be able to ask for it. People can take a while to develop this insight so ask unthreatening questions and be patient  It's okay to make an educated guess about where you should head in terms of life and career, to try something and then reevaluate.
No young adult or adolescent is fully independent - its a long process for everyone the things we dont know may just be more obvious because parents are more aware that we will likely have a lot to learn. Dont take on too much to change about your self all at once or suggest too much for your child, sibling or friend to change at once.

To quote a random person from the internet named Shea emma fett "change should make you bigger... It should make you stronger clearer more directed more differentiated more compassionate. The pain of growth is different from the pain of destruction. One will fill you with love and pride even when its hard and the other will fill you with shame and fear. No one should use shame or fear to try and get you to change... You can solve a lot of things with communication as long as the objective of both people is understanding."

We generally like well meaning clear feedback given in a way that doesn't publically embarrass us but we can only work on one or two things at once. Its also important people dont feel like they have so far to go that who they are isnt valuable and the areas theyve already grown in arent significant.

You don't have to be able to do things I'm the same way or the same time period as other people for it to be worthwhile. The goal of life is to authentically be yourself not to try and imitate others or hide your true passions or personality to try and find a false and temporary form of acceptance. It may not happen over night but progress and growth can definitely happen day by day and step by step as we keep going and keep learning who we are and what motivates us.

Thanks for listening and be around throughout the day if anyone has any questions.

Saturday, 2 April 2016

World Autism Awareness Day 2016

So today is World Autism Awareness Day. Every year social media lights up with discussion about different colours and whether awareness is what we are really looking for. One of the questions this leads to is what are we making people aware of? The fact that we exist? Or is it more subtle than that. Are we really making people aware of things they already subconsciously know? Their inherent prejudices that lead them to reject us on the basis that we don't fit into someone's expectation of how social competence translates into the quality of a person. Are we making people aware of how we don't dovetail neatly into society, or about the little things society does without thinking that make a big difference to whether or not we can participate and connect?

Awareness is not the same thing as understanding. I think people sense that I have a disability but they don't often recognize it unless it’s pointed out.  I think people think I'm capable but not approachable or warm or easy to be around. Despite how it may appear, it's not standoffishness - it's a clumsy ability to connect and be understood coupled with a desire to be liked and known and not to ever unwittingly hurt or offend anyone.

The risk with awareness is that being aware of how someone is different from you can increase knowledge but it can also increase distance.

Are we making them aware of what it is to try and be "normal" but never actually belong? Like all you're ever going to be is a "fake" of "veneer" that people will sense is suspect a mile away. How some of us might seem that way because we don't really know who we are. That critical parts of identity formation and confidence are a luxury that comes through a kind of friendship and acceptance we haven't necessarily really experienced.

Are people aware that sharing your story sometimes makes people more accepting but at least just as often just makes you feel exposed and like no one who isn't scarred in a similar way or biologically related to you will ever want to be around you in any real way?

Being considered "deficient" from the start means that people's expectations are that you'll give 100% of what you have 100% of the time to be more acceptable to everyone else. The lies stem firstly from the fact that people will always think you aren't there yet and couple be doing more, then secondly the idea that it's always you as the person who is different who has to change and give to make yourself less unacceptable. The definition of different is two things that aren't the same not one thing that is always right and one that is always wrong. Thirdly it wrongly assumes that 100% is reasonable and static. This isn't true for anyone, but one of the features of autism and difficulties with a little thing called executive functioning (which affects how you perceive, react and cope with pretty well everything but breathing) means that this theoretical sum of what you can cope with is pretty much infinitely variable at any moment in time.

If we consider the energy that you have to cope with life as like a daily income, even if it is supposedly constant to start with its we actually get paid in a foreign country which needs to be exchanged to the currency where we are at whatever the going exchange rate is at the time. This rate depends on a whole lot of market factors in at least two different countries, and sometimes also other countries which trade heavily with the two we're exchanging currency between. For most people this exchange exists but the variability is like that between two countries with a lot of similarities such as Australia and New Zealand whereas there are a lot more differences to take into account that may or may not be obvious with autistic people like me.

Sure we can try our best (not that it’s reasonable for someone to always perform at their absolute maximum) but everything that we have to try with changes and sometimes we have to prioritise certain needs above others to try and stay afloat. 

Today is about awareness but the struggle and the journey we face on a daily basis is trying to discover and embrace who we are as well as to try and put ourselves out there and find acceptance and understanding.

Saturday, 5 March 2016

Leisure, Disability and Arts: Reflection from a uni activity looking at leisure needs

This semester I am doing a uni subject on Leisure, Disability and Arts. This is our first week and we were asked to complete an activity (The Allan G Roeher Institute, 1989). Without looking at the word count for the activity I wrote a 950 (ish) word reflection which I'm sharing below. After writing it I realised we had been given a word limit of 250-300 words. Rather than waste what I had written I decided to share the full reflection here.


Leisure for me is about feeling safe and relaxed and it’s important that what I’m doing makes me feel connected either to others or to something bigger than myself through a greater sense of purpose.

The most important thing about leisure for me is a sense of purpose. I feel disconnected from a sense of identity without feeling like I’m connected to others through something I am passionate about. I easily become bored with activities that I cannot find this kind of connection in.

Things like watching TV are more about disconnecting than connecting for me. They can help me to recharge, or fill in the loneliness or emptiness around me with background noise. This leads into my second and third highest needs which are to "be totally involved in something" and to "have others around" (The Allan G Roeher Institute, p.13). The fact I really enjoy being totally immersed in what I’m doing can sometimes be at odds with my desire to be around others because I can zone out and lose track of what people are saying or doing around me pretty easily. This isn’t because I am uninterested but I am not always able to attend to a whole lot of different things around me at once. I like to do things well, and to not have to focus on a bunch of things I need to get just right in order to be okay and be accepted.

I often experience a kind of inner conflict between my desire to spend time with others and the need to spend time alone to recharge. While I spend a lot of time alone, a lot of that is to be able to cope well with spending time with others. I only have a finite amount of energy and concentration to give and executive functioning issues related to my being Autistic mean that I can deplete this energy and exceed the number of things I can concentrate on a lot more quickly than others are usually willing to believe.

When spending time with others in a recreational or leisure kind of setting I need to feel like I’m not just in the presence of others but am actually connected to them. That connection also needs to be secure enough that I don’t feel like I’m only one mistake or awkward moment away from the connection being broken.

The other leisure needs from the activity that I most related to were:
  • "Do something meaningful to me"
  • "Make and carry out plans"
  • "Be creative"
  • "Share interests with others"
  • "Try my own methods of doing things"
  • "Be respected"
  • "Feel confident" (The Allan G Roeher Institute, pp.13-14)

Before completing the activity I was aware that I wasn’t really feeling fulfilled and the activity was useful in help me better understand what I feel and to be able describe that experience. In the past few months I have been trying to identify the source of the perpetual sense of loneliness and isolation that I experience. Those around me tend to either think that either:
  • It’s my own fault for not making the most of every possible 'social' activity regardless of how inconvenient or impractical it is or how exhausted I am;
  • That being lonely is not an acceptable response to my life circumstances and therefore I must be mentally ill and should just do to a doctor and get prescribed anti-depressants so I can stop bothering people, or;
  • That being disconnected is an unavoidable consequence of being Autistic that I should just stop complaining about and move on from.

What I had identified from my reflections (prior to this activity) was that my sense of isolation sensed less from not spending enough time with people but a lack of a sense of purpose and that for me it was important to me to be connected to both things simultaneously. That is to be spending time with others where we are talking about or doing activities related to things that I care about. I have a strong sense of justice, and a strong dislike of people not accepting others or listening to them. This means that the activities that give me this sense of purpose don’t necessarily need to be overly impressive, but instead need to lead to people around me feeling connected and valued.

This knowledge is leading me to reassess my life circumstances, and the things that I consider to make my life fulfilled and successful. This activity, and more broadly the sense of theme in this week’s readings and lecture reminded me of a presentation I went to in September last year at the Asia Pacific Autism Conference in Brisbane. Dr. Peter Vermeulen (2015) from Belgium is interested in the topic of Autism and happiness. In his presentation he questioned the validity of the measures we typically use to assess quality of life with relation to Autistic individuals. He felt that the most important factor was the person’s well-being, which includes their own perception and experience of happiness, and that it was short sighted to only assess quality of life using indicators such as living independently and having a job. He suggested that it was entirely possible, and even likely, that an adult with Asperger’s who works in a relatively mundane job (which poorly matches their technical skills and intellect), lives independently and has been to university but does not feel fulfilled or meaningfully connected may actually experience a much lower quality of life than an Autistic individual with an intellectual disability who lives in a group home and very much enjoys their day option activities. Whilst this example is specific to Autism, I expect that it is also relevant to other disability groups and the broader community.


The Allan G Roeher Institute (1989). Leisure Connections. Ontario. The Allan G Roeher Institute.

Vermeulen, P.  (Presenter). (2015, September 10). The Outcome of ASD in Adulthood: Time to Make a U-turn in Our Approach and Focus on Well-Being as a Desired Outcome. Asia Pacific Autism Conference.