A Letter to Those Who Love and Are Loved by an Autistic Person
Like many others who are autistic, I live in a world that is separate from everyone else’s, deep inside my own head. It’s a world that is hard for others to understand, including our parents, family and friends. For our loved ones, our diagnosis can be a whirlwind of misunderstandings, a lack of answers and not quite knowing how to communicate effectively with us.
The mantra that “if you’ve met one person with autism, you’ve met one person with autism” is absolutely true, and I don’t mean to speak for everyone. However, under the autism spectrum disorder umbrella, many experience the same triad of impairments — difficulty with social interaction, social communication and social imagination. In other words, we are lacking some or all of the social abilities that are considered “normal” or neurotypical. Some of us may not communicate at all. Some of us communicate rarely or in “strange” ways. Some of us can communicate effectively with words, but not through body language or social cues. Some of us attempt to communicate often but are also misunderstood often.
I wasn’t diagnosed with autism until I was 22, so I can share my insights with you. Until my diagnosis in adulthood, I never realized many of my own behaviors. Only after reading the stories and struggles of others with autism (and their loved ones) have I truly been able to understand how I’ve been interacting with others my entire life. I’d like to share the misunderstandings I’ve had between my own friends and family members. I’d like to share them with The Mighty community because even though I am just one person with autism, I’m sure I’m not alone in feeling this way.
I’d like to bridge the gap between what my actions were, what I meant by my actions and how you interpreted my actions. For all the times I may have unintentionally hurt your feelings with my social downfalls.
For all the times you gave me a heartfelt hug, and I stood there awkwardly, not knowing how to express my love in the same way. For all the times you wanted to comfort me with a pat on the back or by holding my hand, but I shied away. For all the times I made you worry when I wasn’t doing well mentally, but I couldn’t find the words to tell you why or how to help me. I didn’t know how to say that I just needed to be alone, against your instinct to protect me.
For all the times you wanted to be comforted, but I couldn’t be there for you in the way you needed. I didn’t know a hug, a kiss, or a back rub would’ve made you feel better instantly. For all the times you wanted to have a conversation with me, but I couldn’t make eye contact with you, or I seemed uninterested. It’s hard for me to reciprocate your social cues. For all the times it would have made your day to hear an “I love you,” but I didn’t think to say it.
For all the Christmases and birthdays I neglected to get you a meaningful gift — I wish I could have done more, but I never wanted to disappoint you with something less than what you deserve. For all the times you could never go near my hair, or my toenails or my ears in order to groom me as a child. For all the phone calls you made because I was too scared to talk over the phone — it’s even scarier to predict the outcome of a phone conversation than one in real life.
For all the times I made you go into the supermarket alone, or I refused to stand in line, or I refused to walk into the gut of a crowd with you. The bright lights, numerous and varying conversations, and the claustrophobic atmosphere was too much to bear. For all the times I didn’t eat the food you made — if it was a different texture, I’m sure I would have loved it.
For all the times I neglected to respond to your calls/texts/emails for days or even weeks. I wanted to make sure I could focus all my attention on you. For all the times I didn’t take your movie/music/book/TV show suggestions. I know I’ll absolutely love it, but having too many interests gives me anxiety. For all the times I was too honest about my opinion and I hurt your feelings.
While I live in a world that is often disconnected from the world of my friends and family, we’re really not so different. I simply am not equipped with the instincts and innate skills to communicate with you like you are able to communicate with others. I love you just the same.
The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.
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