Showing posts with label aspergers. Show all posts
Showing posts with label aspergers. Show all posts

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!

Friday, 2 November 2012

Don't Tell Me I Can't Do Something!

So this is a post in relation to a couple of things, including the third annual Autistics Speak Day - which is a day started by autistics in protests of Communication Shutdown Day (a day which aimed to raise awareness of what it's like for people to have autism, by people not communicating on social media for a day). Seems a bit silly to many of use who know being autistic first hand and that autism is not a fancy word for complete-lack-of-communication disorder.

I am a determined person. I am an enthusiastic person. I find a way to make a difference, be different and make myself heard.

So in light of all this, and in living defiance of those kinds of sweeping generalizations (and the fact that yesterday was the start of something new, with me having attended my last class of my undergraduate degree), I am going to present some of the things I've done in the last 12-18 months, that by many people's understanding of autism I probably "shouldn't have".

1. Just over a year ago I, as a result of my own decision, moved into a boarding college... this means that I live not with my family, another family or even with a few house mates - I live with 92 people and am not only present but involved and socially engaged.
2. Started working on this website - christianlifewithautism.com . Although it's not the most active or popular site in the world or anything - I am working on growing it and it's definitely communicative.
3. I commenced and completed a training program in one-on-one behavioural therapy with young children with ASDs.
4. I am involved in a couple of government related committees where I advise on autism related issues.
5. I was a successful leader on a busy youth camp for a week with high school aged kids.
6. I applied for two highly competitive graduate programs and reached the final stage of consideration for both. As a result, I was successful in gaining a position in one of these programs so I have a full time job lined up for next year before I have even graduated - something few people in my class have achieved.
7. I am graduating from university with not one but two degrees, and without having had or needed extra help.
8. I am moving to a new state and city next year, where I don't know anyone, because I am determined to make the most I can out of life and make a difference.

I bet plenty of neurotypicals hae just carried on with their lives in the same amount of time and not been actively involved in as many rewarding and challenging experiences and achievements as I have.

Tori

http://www.christianlifewithautism.com

Be brave and change!

Thursday, 19 July 2012

Well you’ve gotta start somewhere….

After seven months of having this website I think I'm ready to say something.

Sharing yourself - providing information and your experiences for advocating yourself and others and add to the world wide web of interconnected and sometimes irrelevant knowledge out there is a big step. I know it's just a blog and a wesbite but it marks a quiet transition from an invisible silent face of autism to a public one. Making yourself public, even (or perhaps especially) to strangers needs to be a well considered and deliberate step. One I think I'm now ready to make.

As I think about this there are four main questions it raises for me:
1. How much of yourself should you share with the world?
2. How well do you need to know yourself in order to openly share who you are?
3. What am I going to say that is going to be authentic and possibly useful and relevant, or at least mildly interesting to someone else?
4. Will anybody read it and does it really matter if they don't?

For questions 1 and 2 I think I need to be prayerful about what I'm going to say and not say (particularly if it relates to someone I know and not just me because I don't want to break anyone's trust or share anything they may not want put in the public arena). I also need to be comfortable with the fact I am growing and changing just like everyone else and that I can only share what I know and am not responsible for knowing and having thought about everything. I think as long as I'm honest, and prayerful, that even if no one much reads this it is a useful personal exercise in knowing, understanding and thinking about myself and my thoughts on life (which relates to Q3 & Q4). Writing and making up songs are how I often process how I feel about things anyway as my emotional self seems to be less well connected to my conscious (mind) self than for someone who doesn't have an ASD diagnosis.

I think in terms of knowing what to say I need to think of some questions to ask before saying it as well as being prayerful. Questions such as "is what I'm saying true?", "might it help someone else's understanding and experience?", "does it speak positively (or at least constructively and insightfully in a way that brings hope)?" and "does it align with my faith and bring glory to God?".

With this in mind I hope to bless whoever may read this and add to their understanding.

Tori

http://www.christianlifewithautism.com