The other week I was present for the following typed exchange by two people. Both are Autistic and both cannot use spoken language to communicate. (Their names have been changed, as even though both agreed to have their words published here, this issue is sensitive and distressing, as well as deeply misunderstood by most non autistic people.)
Layla: You have an extremely loud stomp. (This was in reference to the noise Jerry made several days earlier and that Layla heard while working in a neighboring room.)
Jerry: Is that a guess or are you certain?
Layla: If you tried to hide it then you gave away the secret.
Jerry: That is what I am behaving like on some days but proud I am not.
Layla: I heard it all and was curious and wanted to give help.
Jerry: Really do you believe that I am not evil? (J. turns his head so he is staring down at the table. His body is completely still. It is a noticeable change from the way he usually sits while having a conversation with Layla.)
Layla: Evil is not this and best to forgive yourself.
Jerry: Thank you for not judging me.
Layla: I only ask for the same respect.
Jerry: The deal is on.
I asked Layla and Jerry if I could transcribe their conversation and publish it here because non speaking Autistic people and the way they act in times of stress or overwhelm are so poorly understood. Non autistic people who witness the actions (often termed “behaviors”) of a non-speaking Autistic person who is overwhelmed, perhaps frightened, often ashamed, unable to control their movements and unable to express themselves are often viewed with annoyance, irritation, fear and/or bewilderment. As the non-speaking person cannot make themselves understood, they are at the mercy of those who care for them.
As I watched this conversation unfold I was struck, once again, by the disconnect between what most of the world believes about autism and Autistic people and the reality. Jerry expressed profound shame and upset and Layla responded with identification and deep compassion.
Their exchange reminded me of something Emma wrote about four months ago after having had a terrible night. I wrote about that ‘here.’ One of the things she typed was: “Pounding terror is all that remains.” More recently she wrote, “The raging screams in my head are starving and want to consume me.”
Raging screams… Pounding terror…
Reblogged this on Melissa Fields, Autist and commented:
A must read. Even though i am verbal and can articulate my feelings, i still lose my words, especially when under stress and duress. Please read, because this explains how much at the mercy all of us can be of others, whether verbal or non verbal, because so many people still don’t understand us. Even though i can speak, i still shut down.
Thank you for sharing Melissa.
Thank you for writing this piece. I feel so alone when people don’t “get” me and just think i am behaving badly or saying my meltdowns are temper tantrums.
“Lose my words” …GREAT way to Say that!!!!
Two non speaking autistic people conversing about feelings and just being people. .. shocker. I really wish posts like this didn’t even need to be written. in other places there would be a long diatribe about progress or how wonderful it is this took place. It saddens me that j had that feeling of shame about his display of emotion. Argh rambling around my point as usual and we are already pushing late for school.
Yup, exactly. The day when a post like this is considered completely unnecessary is a day I look forward to as well!
dear az, as always you are helping us all to understand more. “safety in numbers?” – only if they know more. with you and safer for it b
Dearest B – loving you from afar and glad to be with you in heart and soul.
I’ve learned to ignore the faces/comments of people who stare or say rude things on the rare occasion Risa has a meltdown in public. It’s obvious from the moment you meet her that she is different. Most people give me sympathetic looks and are likely thinking STBY, Sister. (Sucks to be you!)
And then I think of myself. As you know, I suffer from SEVERE depression and panic disorder. I keep it under control by keeping busy and taking my meds but I still have bad days. I completely understand raging screams, pounding terror. Now imagine having that and NOT being able to express yourself. Not having people know immediately what’s wrong. Your parents being woefully inadequate to “fix” the noise inside your head. That is my daughter’s reality.
Some good news, Z! Risa loves her new school! I am so relieved. I was terrified of public school and her being bullied. A kid at a local high school was recently killed, albeit accidentally, for sticking up for a special needs student who was being bullied. The bully hit him, knocking him to the ground, and he died of his head injuries. I have two amazing nephews who have also gotten into fights for defending special needs students. They both told me they thought “What if that was Marisa” afterwards.
Anyways, I’m rambling, but things are going ok for the moment. I promise I’ll email soon.
So glad to hear your news, Ang. That makes me SO happy. ❤
Thank you for sharing!
As always, learned something new here, thank you!
Aw… so glad.
This made me cry a little because even when I tell him he is safe, he doesn’t believe me. Sometimes “the pounding terror that remains” is stronger. I hate not being able to help him with that.
I love the mutual understanding between Layla and Jerry and thank them and you for sharing it.
You know, A.M., I wonder if it’s true that you are not helping him, even if he doesn’t believe you, in that moment. I think we do help just by showing how much we love and saying it, even if in that particular moment it can’t be acknowledged. Over the long term showing up, listening, loving, over and over again can only help…
needed to read this one! as always, thank you for sharing, teaching, and reminding us of what we should already know, but when under stress and during meltdowns we often forget. to compassion…and gentleness with ourselves and others. thank you
It can’t really be said enough, right? “gentleness with ourselves and others.” I often forget the “ourselves” part!!
I just was very upset with my son. (We are both on the spectrum.) He got suspended from an after school program for punching a kid who was teasing him. I think I need to say what You say at the close of this, along with the rest.
Thanks for a little light when it was needed.
I’m so sorry. As Layla said, “best to forgive yourself” (and him)
This touched such a deep note with me, in understanding my kids, and how often they are misunderstood and many like them. Thank you for this reminder
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