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!