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.

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