Imagine… Imagine that from the moment you were born every aspect of your being was evaluated and studied with a critical eye. Imagine that who you were, the way you spoke, moved and behaved was seen as deficient. Imagine that from an early age you were talked about as though you didn’t understand and even if you did not fully understand everything said, you understood the emotions behind the words, the disappointment, the fear, the anger, but you had no idea why you had caused such a response. Imagine how that would make you feel. Now imagine how you would feel if you understood every single word uttered, but you could not speak or make it known to others that you understood. Imagine how you’d feel if you grew up believing your very existence caused others discomfort, pain and suffering.
Imagine that as a small child you were assaulted by light, sound, touch, odors, taste, things that did not cause others pain, but that made your life almost unbearable. Imagine that you also felt people’s energy intensely but were often confused and overwhelmed by these feelings. Imagine that when you cried in distress you were greeted with anger, confusion or were told nothing was wrong and to stop behaving this way. Imagine how you would feel when you finally located the correct words and spoke them, people misunderstood you, became angry with you or you were told the tone you used was “wrong”, inappropriate or the volume with which you spoke was too loud or too soft. Imagine trying as hard as you could to speak as you’d been instructed, but no matter how much you tried, you never seemed able to get it “right”. Imagine what that would be like.
Try to imagine how you’d feel if you mustered up the courage to connect with another human being only to be shunned, teased or rejected and told to go away. Imagine what it would be like to want to have friends and play dates and sleepovers but you had none. What if you tried to make friends, but when you tried to connect you weren’t able to and didn’t know why. What if your attempts to be friendly were seen as acts of hostility. What if you punched someone on the shoulder because you’d seen friends do that to each other, but when you did it you were taken to the principal’s office, reprimanded and threatened with expulsion. How would that make you feel?
Try to imagine what it would be like if the few things that brought you joy were stopped or taken away from you. Imagine if you loved nothing more than to jump up and down, that this motion made you happy and calm, but when you did this you were punished. Just imagine what it would be like if the things you found fascinating were ridiculed and joked about. Now imagine that you are unable to make words form in your mouth so that you could say anything to explain or protest. Or imagine what it would be like if you were able to speak and when you did, you were told your words were unacceptable. You were threatened with punishment and institutionalization. Take a moment to really imagine how that would feel. Imagine what it is like to need help, to have to rely on people and to have those people hurt you, betray you, get angry with you over and over again.
Just imagine how it would feel if experts talked about your neurology as a deficit. Imagine how it would feel to be told over and over that you were neurologically incapable of understanding what another person feels, and that you couldn’t truly understanding your fellow human beings. When you suggested you felt a great deal, when you talked about how painful it was to look directly into people’s eyes because it was like seeing into their souls, or when people went to hug you it made your skin crawl or the odor emanating from the other person was too overwhelming, imagine what it would feel like to have people suggest you should just try harder or that you should do it anyway. Imagine just for a moment how you’d feel if those same people then accused you of being difficult and told you it was impossible to have a “rational” conversation with you or you were told you were rude when you confronted them with their insensitivity. Imagine what it would be like to be dismissed and silenced over and over again. Just try to imagine what that must be like.
Try.
Try to imagine what it might be like to be Autistic.
Emma's Hope Book 
Beautiful, powerful, amazing post! Thank you for writing it! I’ve already shared it on FB and asked people to please read it!
Thank you so much Kristin!
This was so well written, it made cry. It is painful enough to try to imagine, let alone experience these things. Thank you for the insight.
🙂
I’m not autistic, and there were still many items in those descriptions that fit my childhood experience. Many neurotypical abused children are disregarded and worse, but autistic children have to endure so much more. Hopefully, day by day, more people will listen to these messages and hear the voices that have been silenced or ignored. Maybe more people will walk a few miles in an autistic’s shoes, reconsider their perspectives, change their ways of interacting, and help instead of hinder. I think your blog is helping a few more people wake up every day and join the side of compassion, inclusion and understanding. One can always hope. And imagine a better world.
We do, we imagine a better world… 💕
From the beginning of our story I have asked others to do this – imagine. Rather than place the burden on my son to conform to an exterior expectation of who he should be or how he should act, I ask other children, adults, and educators to meet us half way with patience, kindness, and compassion.
I did not do this in the beginning… I wish I had… I’m always so glad when I meet those like yourself who do.
Thanks for writing this. It is a good rendition of what it is like to be Autistic in school, listening to the congressional hearings, seeing A$ ads, accidentally looking at the blogs or comments of people who inexplicably seem to hate Autistics though they are related to them, etc., even in one’s own family, perhaps, but not in touch with one any more…. On the other hand, speaking for myself, it is fun to be Autistic among some other Autistics, or among family and friends like you who care, and are loving, and make me laugh, or in the dappled light like this describes http://www.tinygracenotes.com/2012/11/autistics-speaking-day-2012-my-ode-to.html and I the reason I want to say this is to remind everyone that our lives are indeed worth living, because they are, they are, even when they are hard, they are always worth living. Notice that a large part of the worth-livingness of lives is love, and thanks for being on the side of love, Ariane. xxxx
(((Ibby))) I am so, so fortunate to know you and am honored to be your friend.
Right back atcha (((Ariane)))
Shared this on my FB. You should submit it to HuffPost – there is not one person in the world who wouldn’t benefit from reading this.
Joel shared it on his, too. We’ll make this post go viral yet!! 🙂
Ang, Thank you. I just love how supportive and encouraging you are. Whenever you encourage me to submit something to Huff it makes me smile. You’ve got my back and I will take your advice after I make a few tweaks! Sending all of you love.
Very powerful!
Thank you Aaron
Nice
Lovely post, and very important. I’ve shared it on FB, G+ and tweeted it.
Thank you so much Katy!
Oh, Ariane, I’ve said it before. You really get us! You are such a wonderful person to know and Emma is so fortunate to have you for a parent. Thank you for being such a terrific, loving, and lovable ally to the autistic.
Best compliment ever! I feel the same about you, I am so lucky to know you, wonderful you.
Spot on. You actually made me cry, something I rarely do. I feel exposed, reminded of my differentness, and the things that hurt. I could barely catch my breath at the gratitude I also felt when reading this. You know. You write, so others will know. The world is a better place for it. ❤
I then read Ibby’s beautiful comment and blog, and was snapped back to my light and happy side, and let waves of love and sensory pleasure rush in. What a roller coaster ride! Thank you, both, for challenging me to face both sides of what I always thought was my private, secret self, and making it all okay to be open. I am learning there are many like me, and learning how to connect and be friends. I am determined to continue to grow in my connection with others as myself, and not just a character onstage. You are teaching me the value of it. The world is a better place for what is shared, both the hard stuff and…..the dappled light! ❤❤❤❤❤❤❤
Aw… Chou Chou, I did think of adding a little addendum asking my autistic friends to add or edit as I felt sure I had gotten a few things “wrong”.
And I love Ibby’s reminder of the dappled light. It is something others do not see or know about. We all have our version of dappled light, NTs learned at an early age to ignore it and forget about it, we need those who are Autistic to remind us of it’s value and beauty.
You do that. 💕 Ibby does that. 💕
You did good on this one girl! 🙂
Thank you dear friend!
Wonderful post, Ariane! You keep hitting more and more highs, but in my opinion this one is the best ever. I can barely see what I’m typing for the tears.
xxoo Mom
Mom…. 💕💕💕
I liked this a lot. It is very accurate. I feel the same as Chou Chou, more aware of my differentness. Seeing my feelings written out makes me feel vulnerable, but it is also nice to see that someone understands.
I’m sending you a great deal of love, because your “differentness” is appreciated and sorely needed in this world.
This was amazing and beautiful and sad because I don’t need to imagine anything and happy because a nonautistic person understood this and wrote this.
For me, that you can understand this about us shows how real empathy works, that if we try we can listen and understand other people and care about them.
This made me feel too many feelings too strongly and I thank you for that.
💕
Wow. This is a keeper. You just described my little guy.
Extremely moving. I’ve only recently learned that I most likely have Aspergers, and reading things like this help immensely, as an artist and a writer whose work is often “emotion based” it is comforting to hear the words I’ve felt for so long ring true to others. Our mouth’s may not move, which means our ink must speak loud and clear with precision and specificity.
And as an artist, your art is a beautiful way to communicate too! It’s always surprising to me when people seem not to understand that.
I wish everyone understood these things and not just those that have aspergers or have loved ones that do.
My husband and I always say that our biggest wish is to “get into” our son’s head – not to “fix” him, or anything like that – we just want a window. I haven’t yet met another autistic person who’s like him (yet) and often read blogs or books, thinking, “Yeah, but not really.” I think if we had some way of getting what he’s thinking – life would be a lot less frustrating for all of us (I know I mentioned that already) – the worst is moments like last week, when he was smiling and giggly one second, something happened, and the next moment, he was weeping in my arms, inconsolable. It’s like having your heart ripped out when there’s NO WAY to sort it….
* I did have a question, too, if you don’t mind me asking that of you, Ariane – is there a place I could do that other than in a comment box?
Hi! Yes, email me at emmashopeblog@gmail.com.
Yeah, I have yet to meet another person who is just like Emma!
Thanks!
Ah, and you can look out for my yahoo nickname, “bananas” in the email
Ahh… good to know 😉
I don’t have to try to imagine it. A lot of what you described are things I have experienced and still do today. I’m constantly misunderstood & it’s frustrating. Thanks for posting this Ariana.
I can imagine it would be. Perhaps over time this will change. I certainly hope so for ALL our sakes, but particularly for those who are Autistic. Thanks so much for reaching out.
Been out of the loop as Brett had been sick and Erin too…..SO SO glad I went back and read this!!! Wonderful! Will share on my FB too!
I don’t understand how you can understand so well. I know, you and Emma. But still.
I need imagine nothing. This IS my life, and has been since birth up to the present day. I was born deformed and was formally diagnosed with autism a few years ago.