We hope you'll find Sparrow's letter useful, and will leave copies atop the keyboards or devices of those who need to read it.
Sparrow Rose Jones
|Photo: Chris Yarzab / Creative Commons license|
[Image: young boy with a dark flattop haircut
sitting under a tree by himself and crying.]
To Anyone Who Is Concerned,
Thank you for being concerned; it means you care about me and my family. But I notice you don’t understand what is happening, so I wanted to let you know why I am doing these things that got you concerned.
I am probably...
- Being loud (or possibly WAY too quiet).
- Trying to hide.
- Running away.
- Moving in ways that look unfamiliar to you.
- Moving in ways that you don’t understand.
- Trying to bother you.
- Badly brought up.
- Struggle getting my needs met.
- Feel overwhelmed by too much sensory or emotional input.
- Feel powerless in a frightening and chaotic world.
- Have a hard time with emotional self-regulation and self-care.
- Need your understanding and accommodation.
- I am having a really hard time and will need lots of recovery time afterward.
- Meltdowns are painful and embarrassing for me, even if you can’t see that.
- My parents are good people who are trying to help me the best they know how.
- You have no idea how hard I do try and how much I do succeed every day.
- We all tried to avoid this and are all feeling really bad that I got this stressed anyway.
- Not staring at me or my family; we feel bad enough already.
- Not touching me; I’m already coping with so much and your touch is too much.
- Not making nasty comments to us or to other people in our hearing.
- Helping me and my family safely move to a more private place if possible.
- Being compassionate with us all for the rough time we’re having.
- Learn to recognize my signs of stress and help me get out of difficult situations.
- Don’t think of stress-prevention as “coddling” me but rather as necessary care.
- Let me take new situations at my own pace, even when it feels painfully slow to you.
- Don’t over-expose me to stress, thinking I will “just get used to it” that way.
- Be willing to change sounds and lights or number of people to help me feel safer.
- I’m not trying to pester you; please listen to me, even if it’s the same question repeatedly.
- It’s even more important to listen when it is the same question repeatedly.
- My questions are to help me understand the world and feel safe. Help me with that.
- Many questions can mean I’m eager but can also be a sign of stress; learn to discern.
- Feeling ignored when I ask questions can build up to a meltdown level of stress.
- It doesn’t mean I don’t love you. I can love you tons and still not be able to keep control.
- It doesn’t mean I didn’t want to come. I can get overwhelmed doing things I really like.
- It doesn’t mean I’m not grateful to be there. Meltdown is just so big it takes over for a bit.
- It doesn’t mean I don’t want to come back. Maybe when there are fewer people?
- I didn’t mean to ruin your event. Try not to make me or my family feel bad about it.
- My nervous system is developing on a different timetable from other people my age.
- A meltdown is like a seizure or vomiting: willpower and discipline will not prevent it.
- If I am a teen or adult, please don’t call me a child or kid because I still meltdown.
- I feel terrible during and for a long time after a meltdown; if I could stop them, I would.
- Being able to do something else “beyond my years” doesn’t change my nervous system.
- Like a burden (and that is a horrible feeling I hope you never experience).
- Ashamed because of who I am and things outside my control.
- Frightened that I might be a bad person who hurts others.
- Sad and angry that I struggle with a world that is so difficult and unforgiving.
- Like no one understands how hard I am trying to be a good, grown-up person.
Above all, assume best intentions and strongest efforts on my part and on the part of my family, friends, and others who are with me. Follow my lead and, when I am too stressed out to help you help me, follow the lead of those who know me best. When you help me cope with a meltdown and when you help create an environment that helps me avoid meltdowns, you are helping to build a kinder, gentler world that has room for everyone, no matter what kind of nervous system they have. That is a great thing you are doing and you should be pleased that you are part of something so grand and loving.
- Thank you for recognizing my value,
- Thank you for being a person of value,
- Thank you for caring about Autistic people,
- Thank you for caring about me,
- Thank you,