So often when looking at Facebook pages and websites about Autism, I see parents talking about the importance of sharing their experience with the world. They argue it adamantly, over the top of all other voices, stating their right to free speech, their right to be heard, their right to support.
I've been struggling with this because I do believe that everyone has a right to speak their own truth, but I have trouble reconciling that belief when I can see a persons words damaging others. I see some people trying to silence others because their truths don't match up.
Reading Cynthia's article today helped me clarify some thoughts I've been processing and I'd like to share those with you.
Cynthia says,
"I think of autistic safe space as a kind of middle ground, between autistic friendly space and autistic space. There isn’t necessarily a clear definition of each of the three, but for the sake of helping people new to these concepts understand them better, I’ll take a stab at describing them.
Autistic friendly space tends to be predominantly allistic space which has been modified to make it more welcoming to autistic people. For example, sensory friendly film showings or an event that features flapping instead of clapping, is held in a hall without fluorescent lighting, requests attendees to be fragrance-free, provides communication badges, has a quiet area and does not allow flash photography.
An autistic person isn’t necessarily going to feel totally comfortable in autistic friendly spaces, but there are considerably more accommodations made than in the typical public space.
An autistic safe space takes the concept of autistic friendly space one step further, putting the autistic person’s needs first. Often safe space has a greater emphasis on safety with regard to identity and expression whereas friendly space has a greater emphasis on disability accommodations.
Online, autistic safe spaces are very much about safe speech. In person, the concept is extended to physical expression, meaning that things like stimming and atypical communication are welcomed and accepted rather than simply tolerated. Safe spaces are often a place to explore difficult topics and push at boundaries without the fear of rejection or humiliation.
Autistic safe spaces can be mixed spaces, but are generally autistic led. Sometimes this works out really well, with people of different neurologies sharing experiences and learning from each other. And sometimes it turns into a disaster. I’ve seen both cases firsthand and, ironically, when things go wrong in a safe space, people can be hurt badly. Much more so, it seems, than when things go wrong in typical public spaces.
Finally, there is autistic space. I was going to define autistic space as one in which all participants are on the spectrum, but then I realized that my home is autistic space. It’s a place where I feel completely comfortable to be myself and where my communication style is honored. It’s a place where I have minimal sensory distraction. A place where I know what to expect.
Perhaps autistic space is a cultural construct rather than something that is created strictly by the neurology of the participants. And that feels like an idea that’s too large to get into in the final lines of a post, so I’m going to set it aside for another day."
This is something I work hard on here at Amazing Adventures parenting Autistic children.
To be honest, as a non-autistic person, I am unable to keep this page as Autistic space, or even Autistic safe space.... because I do not know what it is like to be Autistic, and therefore cannot always anticipate what will make a space unfriendly, but I am learning. I am trying to do better than just having an Autistic friendly space, but it will take time and more learning.
To that end, I do my utmost to keep my blog and my page Autistic friendly space. You may from time to time notice that a comment has been deleted, or that I do not repost some things shared on my page. This is because they are things I know from having spent time with and listening to Autistic people that those things make a place unsafe.
And, as Cynthia says, there are some things that will always be completely unacceptable. You will never see me speak about my children making my life harder. You will never see me supporting the "Autism is a tragedy" message. You will never see me favouring the voices of non-autistic people over Autistic people on the topic of Autism.
There are three reasons for this. The first is that to do any of those things would hurt my Autistic friends. The second is that assuming doing those things would hurt my Autistic friends, I also assume it would hurt my Autistic children. I am not prepared to do either of those things in order to make myself more relatable or readable, to increase traffic to my blog or page, or to fit in with the status quo. The third reason is that I value my integrity, and I will not speak things that are not true for me. My truth is important to me.
I will always speak my truth unapologetically.
And the truth of my life is, it is hard.
Parenting is hard. But that is not my children's fault.
Being a wife is hard. But that is not my husbands fault.
Being a student is hard. But that is not my teachers fault.
Being an advocate is hard. But that is not your fault.
It is just life. It is how it is. This is fact.
My life is my responsibility. I have chosen everything in it. I continue to choose everything in my life everyday that I don't walk away from it all. It is hard. It is mine.
And my truth is that even if it is hard, I do not choose to walk away to something easier, therefore I will not complain to you how hard it is.
Some will say that not telling how hard things are all the time makes me inauthentic, unrealistic and a phoney. Some will say that it is important to tell the struggles so that other parents know they are not alone. Some will say that failing to acknowledge the difficulties publicly invalidates the experience of others.
I say that insisting I do all those things would make me inauthentic, leave me isolated from those who share the same experience as I do, and would invalidate my experience.
Our truths do not align. Yes, they are entitled to speak theirs. When they are individuals I do not go into their space and tell them they are wrong. I simply avoid their space (this changes for me when the person speaking represents an organisation, but that is not what I am talking about here).
I do not live a life so difficult that is is miserable. I do not need to hear each individual story to know there are others out there who find things tough. I do not need to hang around with people who want to focus on the hard stuff. I do need support from those who are trying as hard as I am to remain positive and proactive.
I will always speak my truth unapologetically.
I hope that other individuals will respect my right to speak my truth, and rather than stepping in to my space to educate me, they will simply avoid my space.
In my space I will continue to speak my truth unapologetically, and I will do everything I can to keep my space safe for my Autistic friends and family members.
To my Autistic friends, I am sorry.
I am sorry that all too often you have to deal with spaces that are not Autistic friendly, let alone Autistic safe.
I am sorry that I sometimes let you down.
I am listening, though, and I hope I am learning enough to improve in this area.
I want to thank you- for being patient with me, for being open with me, for teaching me when you have no obligation to.
Thank you.
You are all making such a difference in my life, and in the lives of my children.
I will do whatever I can to make this space safe for you, and for my kids. There are so many places that I know you do not feel safe in. I hope this is a place you can come and feel heard and be safe.
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