Saturday, 7 September 2013

How we see the world is different not wrong

There's been a long debate about how one should refer to Autistic people (and people with disabilities in general). It's a heated affair with strong advocates for either side. On one side Autistics are incensed that people would refer to them in a way that separates their Autistic essence from their identity on the other parents, disability advocates and researchers want to acknowledge the individual's humanity first and separate it from the disability which brings with it challenges and potential discrimination. Of course there is overlap with people in the categories I've mentioned belonging to the opposite camp as well. I guess the message I want to convey here is that person-centred language is not appropriate if the person being referred to considers what is medically defined as their disability as a core part of who they are and how they perceive the world. To use person-centred language in this context is to accept only part of the person, dismissing a key part of them as being inferior.

I find it interesting that the groups within the disability community which vocally object to the use of person-first language are those for which their disability fundamentally changes the way they see the world: The Autistic community, the Deaf community and the Blind community. It's possible to separate a missing limb from who you are internally as a person, not so the very nature of your experience of the world and everything in it. Perhaps the use of person-first language is valid outside of these parameters but when one sees the world fundamentally different it contributes significantly to who you are and how you perceive and interact with your world.

If you struggle with the concept or aren't sure about it I would encourage you to read an article by Oliver Sacks, the world-renowned psychiatrist best known for his books of interesting case studies such as 'The Man Who Mistook His Wife For A Hat'. He once wrote about a man named Virgil who had lost his sight early in childhood and gained the ability to "see" in his 50's. What might seem like a miracle, actually proved to be very difficult for him. His brain and how he perceived the world had great difficulty adjusting to this new bombardment of visual stimuli. It made his life harder to navigate, not easier. I think this article provides interesting food for thought which takes the 'separation of disability and identity' , 'cure' and 'normalization' arguments out of the black and white and demonstrates the shades of grey that defy the assumptions people tend to make. The article can be found here:

Working out and accepting who we are is a massive part of life and happiness. How much harder is that process if people are constantly telling you that who you are isn't good enough, and worse that you're always going to be that way no matter how hard you try? This is where the negative stigma and deficit based perceptions of autism can be damaging. Autistics start out lower on the ladder of social skill and acceptability than most people and have a long way to climb to try and reach a point where they can interact successfully enough with the world around them to be accepted.

If they are constantly told to correct their behaviour or that they are somehow wrong that contributes to low self-esteem and anxiety which can make it even more difficult to be motivated to keep trying and learning. Feeling powerless or unheard also doesn't help. Is this about blame - no. This is about respect. This is about drawing a line in the sand and saying who are we, that is society, to say that one person is more valuable than another? Who are we to say that one has more right to have an opinion than another, particularly about things which directly affect them and those like them? Who are we to say that there is one "normal" way of being and anything different to that is unequivocally and irrevocably less? At the core of the idea of "cure" is the concept that someone is defective unless they are fixed.

In French the way you ask for someone's name is effectively "what do you call yourself?". I think we have the right to identify and introduce ourselves how we see fit. If someone says I am Autistic, respect it. If they say I am a person with autism, respect that too. But don't let convention get in the way of someone's identity. Have a default mode sure, but respect the fact that people have a way they want to identify themselves and be acknowledged. If someone doesn't refer to the fact they're Autistic as a disability, don't refer to it as one around them. Be respectful, be accepting and be empowering of that individual. Frame them by their strengths and not just an endless list of things that need fixing for them to be worthy of inclusion. That's assimilation not inclusion.

If you're still not sure in a given situation ask yourself does your use of person-first language make the person feel valued? If that is your intention behind using person-first language then it is a natural progression to be open to changing your language in order to make the person you're referring to feel accepted. Words are highly contextual. They are powerful. They can make people feel included or marginalized, valued or patronized. 

If your intention is to accept someone then use your words in a way they find accepting. Accepting of who they are, how they identify themselves and how they see the world.

Tuesday, 27 August 2013

Hands up to help - An open letter

Hi I'm Tori, and I'm an eloquent and capable young adult. I'm here to make a statement. I'm here to be open about belonging to the Autistic community. Not belonging as a disconnected puzzle piece, or through a box ticked on a census form but by being intertwined within a bright, dynamic and compassionate community who care about each other and the world around them.

I'm not speaking out to talk about me. I’m not speaking out from a personal agenda or because I somehow think this will make my life easier. I’m here to declare this isn’t about you helping me. This is my putting my hand up, along with many others. This isn't about my story. This is about hope. It's about how we can help one another.

To all the dedicated and inspiring parents, researchers and service providers – we are not here to replace you. We’re not here to tell you that everything you’ve done is wrong. We’re here to thank you. We’re here to work together. We’re here to help you, both to listen and to speak. In partnership and in unity we will be stronger. We might not use the same words to describe it but we all desire a future where Autistic people are able to lead fulfilling lives, be accepted and embraced by their communities and not be held back by their challenges.

We don’t deny your willingness to help. We don’t want to dissuade you from your passion. But we do want to be able to contribute. We want to contribute in meaningful ways, not just in token gestures and through feel good news stories. We have an opinion. It isn’t the only opinion, but it is one that should be welcomed into the discussion.

I have come to the table as a reluctant advocate. Such negativity and misunderstanding has surrounded the word autism, that many are disconnected from the advantages of being Autistic and finding Autistic community. I wish I had found the hope within this community sooner, the spark I see in the Autistic people I have had the privilege of speaking with is something to be treasured and not hidden. I hope for a world where fear of rejection and exclusion is not a factor in whether or not to disclose. Where I don’t feel as if people will suddenly see me as less or become more aware and judgmental of my limitations because of something they view as a deficit in my potential. No not everyone is like that, but there is enough misunderstanding out there for the concern to be real.

If the goal is to learn to behave so we don’t appear Autistic, people can feel excluded from the ability to be true to themselves without judgement. That is not to say that we cannot improve, or shouldn’t desire to change in order to become better people, but to say that we are not that different in this respect. We can all benefit from gaining more perspective and becoming more understanding of other people. Our desire is to see people fulfilling their potential, learning how to shine the light inside themselves without fear of being chastised or rejected for seeing things in a slightly different way. Accept me first without restriction or condition. We can equally change how the other sees the world.

So much division is caused by tiny little words such as ‘cure’ or ‘label’. Words have emotional power. Words can take away someone’s dignity if they feel they invalidate their existence. Simple words can cause such offence that they distance people from finding their common ground, the things they do agree on. Maybe we should focus on fulfilment and on releasing people’s potential instead of finding a ‘cure’. These goals are not that different, and in some cases not different at all, it’s a matter of terminology.

One of the things we want to vocally support is to shift to a more positive way of viewing Autistic people and their challenges. Our challenges may be significant, but we don’t have the market cornered on having challenges, on untapped ability, fear of rejection, anxiety or need for encouragement and support to become successfully who we are. Let’s focus our perspective on moving forward and not just on catching up. Where we start isn’t necessarily relevant, or helpful, to the discouraged and weary.

How do we promote a more positive way forward and foster togetherness?
  • By starting to focus on the importance and value of being and not just doing.
  • By accepting everyone as valid and equally part of the Autistic community, whatever our level of perceived ability and independence.
  • By fostering potential and celebrating success whether people are learning to use a knife and fork or are graduating from university and stepping into the world as a professional (if you care to look there are a what you may see as a surprising number of Autistics in this category with qualifications in education, the creative arts, social sciences, IT or many others).
  • By remembering that we are not alone in our challenges.
  • By emphasizing teaching living and not just getting by.
  • By building self-acceptance alongside self-improvement.
  • By seeking to understand as well as to be understood.
  • By promoting respect and tolerance above compliance.
  • By listening beyond the first word we might not like or agree with and pursuing what we have in common.
  • By being encouraging and welcoming people.
  • By acknowledging the efforts and intentions of others even if we don’t get it right.
It is my sincere hope moving forward that we will work together. Let us help. Let us contribute. We are here to give and not just to get. We are able to listen and have things to share. We are all working towards a brighter future and will reach it sooner and more meaningfully if we do so in partnership.

Let's build something positive!

Thursday, 22 August 2013

Anthems for a brighter future

I've written some lyrics the past few weeks in response to APAC and Future Leaders. Particular reference to Michael Gillies-Smith's closing plenary on oneness and Ari Ne'eman's calls to a united Autistic voice and a place at the table of influence and change. You will also find a reference to Thomas Kuzma's Aspie Odyssey.


Speaking out and listening we find ourselves
We realise just how much we have in common
Learning to live and letting go of hiding
We won't hold back, we're proud of who we are

The reflection of your heart 
Is drawing me to you
Aa spectrum of colour
Aa spectrum of life
We celebrate diversity 
We're stronger together
We are running to a future where 
We're better than before

Old expectations are broken and surpassed
We will lead a future that's brighter than the past 
Building momentum on a path of growth and change
We will not be a generation that turns the other way


 Is it typical to try this
 Is it typical to hide 
Do we typically listen 
And learn from what's inside 

Do we open our perceptions 
Do we choose to let them change 
Do we choose to let life lead us 
So our future's not the same

Is it typical to wonder 
Is it typical to see 
That we're really not that different 
There's some you inside of me 

Is it typical to hold back 
Is it typical to fear 
Whether people will accept us 
Or will write us off as weird

I can learn from you 
And you can learn from me 
Let's fuel the things uniting us 
Embrace the odyssey


Open hands standing there 
Letting go of this atmosphere
Taking chances, living change
Seeking justice and finding strength

Hiding on the sidelines 
You will never see your worth
There's no safety in the waiting
There's a fire in your words
You can influence the mountain
You can make it through the storm
With a willing heart to guide you
You'll be better than before

Change their minds 
The future's bright


 Who we are, where we stand 
Let's find a heart that won't get scared 
Living out liberty 
The outcast will become the free

Tightrope waiting 
In the early morning sun 
I can't be the only one 
Who doesn't fit in here

Boxes trying 
To make something out of me 
I'll start fighting to become 
I want my identity


Light the sky with the pulse of a million dreams
While we search out the rhythm within ourselves
Can you hear the potential for unity
Have we lost it in all of the sound

Settle down, pick your stage, there's no reason to run
Run yourself off of a cliff's edge with all your zeal
Don't say to yourself who am I to be heard
There's a reason the future exists

Listen up, take a stand, we'll be counted this time
Take a risk, make a change, for the hope we share
We're all after something that looks like a better life
Combine our momentum unite for a future ignited
A path and a purpose that's bright

Friday, 16 August 2013

So Many Questions...

Reflecting on the past few weeks I looked up a poem I wrote not long after being diagnosed. I've changed one or two words but I think the general message of it is still relevant. It's difficult when people don't accept what you have to say, particularly when you disclose something personal and life-changing.


It answers so many questions
But you just don’t want to believe
That I’m not like everyone else
When it’s so obvious to me

You don’t think I am different
You just act like it’s not there
And I know that you mean well
But it really hurts

“Pretend that it’s not there”
“It might just go away”
“You’re making it all up”
“Everybody’s strange”

Denial is no answer
Rejection is no truth
I know that there’s a reason
That I feel out of touch

It answers so many questions
But you just don’t want to believe
That I’m not like everyone else
When it’s so obvious to me

You think that I am clutching
At straws that just aren’t there
But you know I didn’t ask
For this answer

“You look like you are normal”
“You always got good grades”
“Everyone got teased”
“You just don’t act your age”

Denial is no comfort
Rejection is no cure
I know I don’t see or think
Like everybody else

It answers so many questions
But you just don’t want to believe
That I’m not like everyone else

When it’s so obvious to me

Monday, 12 August 2013

New endeavours and the dawn of acceptance

(takes hammer and breaks the digital silence)

Ever get the feeling your world will never be the same? That so many things are suddenly possible?

When I signed up for the Future Leaders program, I didn't know quite what to expect. I guess few would have given it's an inaugural project, something that hadn't been done before. The maiden voyage of the visionary endeavour of a couple of highly motivated individuals who were determined that the Asia Pacific Autism Conference should embrace and accept those with lived experience.

I knew I'd enjoy the conference. Given psychology is one of my key interests (for me this means that I would go to the symposia for the psychology teaching staff for fun whilst at uni, and it's not unusual for me to read academic articles on autism, cognition or other interesting topics during my lunch break). Being part of a project involving bringing 23 autistic young adults (and a few slightly older inspirations) together is something I didn't have a concept for. Being diagnosed as an adult, the autistic community is not something I'd really encountered a lot of.  I've connected with people online or one-on-one but this was my first foray into a big group.

It was a very rewarding and emotional experience. I guess I also found it validating. Not every one believes you when you disclose, there are people that think you are lazy or looking for an excuse for something. This leads to a fear of disclosure that is closely related to a fear of alienation, rejection or being misunderstood. The no-one-else-does-this effect can leave us feeling isolated, and this past few days allowed us as a community of individuals to discover both ourselves and each other, to embrace our sameness and our diversity and to grow far closer than we (or than at least I) expected. 

Lesson number one (there will be more as I reflect more later on) - Mutual understanding and acceptance is something of incredible worth. 

I have met so many beautiful people, great encouragers and people of talent with dreams that are growing by the hour. I'm left humbled by the experience. 

This is the start of something new. Change is coming for the better.

Friday, 1 February 2013

Strong, Determined and Capable (Joining the Minority)

So Monday (today being Saturday) is going to be a pretty momentous day for me.

I am privileged to be joining the extreme minority of individuals with ASD who are working full time. ASD unemployment rates are horrendous and even dire statistics are deceptive because they don't count people being employed in terms of "living wages" - that is in terms of whether they earn enough to meet their basic needs or not. Any kind of employment counts. This means that when I worked 9 hours a fortnight I still would have counted as being employed by most statistics which put ASD unemployment at 70-90% even though what I earned from my job wouldn't have even covered my rent let alone food and so on.