Monday, August 19, 2013

Don't do this

My friends mean well.

Yesterday was pool day. An outing. Fun.

When we got there, I swam alone.

I always swim alone.

The pool is overwhelming.

I practiced my dolphin kick. Practicing to swim in a mermaid tail. I pretended I was a children's performer, coming out of the water to wave and pretending I didn't need to come up for air. I imagined myself swimming in a tank. I practiced sitting in the shallow lip of the pool, testing to see if there was room for a mermaid tail.

And then I was done. I didn't swim for more than a half hour or an hour. I was in-and-out of the pool. I didn't want to force myself to swim longer just so I could look like I was having fun at the pool. Like everyone else. I didn't stay in the water to avoid well-intentioned questions, only to pay for it later with exhaustion.

I was done.

Pressure to look normal.

Pressure to be social.

Pressure to have "fun."

I was trying to self-regulate. I was calculating my "spoons." I had a friend coming over later; I wanted to save some spoons for that. I didn't want to wear myself down.

I walked around the pool for fifteen minutes, talking to myself, up on my toes, hopping, stimming, "dancing." I walked until I was dry.





My friends meant well.

They wanted to "rescue" me from boredom.

They waved me over to the water. I shook my head politely.

Pressure.

They begged. They bartered. They pleaded. They haggled.

We could just swim in the shallow end.

We could just sit on the steps.

I tried to say it politely: I'm done. All done. I signed it: [done]. No, thank you. I'm already dry.

That's why you need to get wet!

I don't want to get wet.

We can just go sit in the kiddy pool.

Well, okay... that was okay. I guess. It was quiet; there were almost no people; it was far away from the commotion of the main pool; it was shallow; there was shade; and we could just sit. I wanted to be a good friend. They wanted me to be in the water. Good friends make their friends happy.

Social conditioning.

She got in the water and swam around at our feet. She splashed me.

She splashed me. I was already dry. She splashed me.

I cringed. I didn't say anything. Good friends don't complain. She didn't do it on purpose. Good friends don't say anything. That's making a scene. Good friends don't make a scene.

My bottom hurt from the hot concrete, and the grainy dirt and rocks, and the little dimples in the cement.

"Let's go get in the pool."

No, thank you.

They begged.

No, I'm done. No, I'm done. All done. Too many people.

"Pleeeeease? We can go in the deep end you can practice your dolphin kick. Look, there's hardly any people there."

No. Too many people. Too loud. Too much. Too much going on over there.

They begged. They pleaded. They bartered. They haggled.

No.

I got up and walked away.

I did not feel good.

My legs were wet. They were itchy. They were wet.

Wet.

I walked around the pool. I did not dance. I trudged. On my toes, but I trudged. Exhaustion.

I spent the rest of the afternoon sitting behind a chair, under a towel, singing, rocking, and making cat noises. Meowing.

And then I had to keep it together for three hours of friendship at home.

Don't do this to your Autistic friend.

75 comments:

  1. Thank you so much for your voice.

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    1. 1st comment. You win ;) lol. I'm glad my post was appreciated ^_^

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  2. Thank you so much for sharing this.

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  3. Ugh. I hate days like that. You friends don't understand that it's awful for you? Maybe they can read your post and understand. Or get new friends with whom it's safe to tell your truth. Not accepting "No" for an answer is bullying, even if it's disguised at begging. "I'm done." is no.

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    1. It's not bullying. They just don't know any better. They can't read minds. They were only trying to help. It's not always easy to understand someone else's perspective.

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  4. it so hard for me to i want to do stuff but then next day evcen that day or night i pay for it socialzing can be fun an hell at the same time when im with my good close friends can be myself an they dont care if i get stimmy .but i treally try an keep it togher in public but it can be very overwhemiling an draing

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    1. I sooooooo understand that. Have you read my other post, "No room, too much"?

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  5. I understand, and thank you for writing this. :) Sending internet peace.

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  6. We understand, our son has Aspergers and we really try to give him his space and accept when he is Done. We are sending you a hug for being strong and voicing your thoughts. Please continue. It is very inspiring.

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    1. Thank you for being such great parents. I will continue, I promise. (((hugs)))

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  7. Awesome! We need more Autistic Chicks out there telling their stories. Thanks!

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  8. Well said!...Thank you so much for Sharing...You're an amazing person...♥

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  9. Well written. I completely understand. I have experienced this many times. I know this very well. I have experienced this for years. The expectation that I need to be made happy and enjoy myself for far longer than I am able to. Then people wonder why I get grumpy, irritable and crave solitude.

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  10. I know what it's like to want to retreat into your own pocket where you can recuperate, regain your energy, and reinvigorate yourself so as to continue having a good time with friends...only for them to call you selfish for spending time away from the group, trying to guilt-trip you over it, and a bunch of other bullshit. I have nothing against neurotypicals, and really don't even like to use the term much, because at the end of the day we're still just humans. However, for a condition, the symptoms of which present themselves as having a lack of empathy, I am often shocked at just how pathetically difficult I notice it to be for those same neurotypicals to so much as make an -attempt- at relating. Pretty depressing.

    Oh well, keep up the good writing.

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    1. They really do try. They just don't always 'get' it. Just like Autistics don't always 'get' NTs.

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  11. Parents of autistic children hear all the time that we should push our children -- to learn skills, to socialize, to experience things, to "have fun." I don't like being pushed. My son doesn't either. You explain it so well, Kitt. Thank you.

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    1. You're welcome. I'm glad you found my explanation coherent ;) I think that being a little outside your 'comfort zone' is part of life and learning. But it shouldn't be forced to the point of meltdown.

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  12. Thank you for sharing this. Shared on facebook.
    <3

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  13. As a fellow autistic, I experience this exact phenomenon all too often...

    FUCK NEUROTYPICALITY

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    1. I disagree. Some of my dearest friends are neurotypicals. It's part of what makes them unique. Not all of us can be gifted with autism, but it's important that we see them as equals and understand that their condition contributes to the diversity of the world.

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    2. PS I shared your post about meltdowns on Facebook. Awesome piece.

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  14. You've put into words what I've felt many times. Thank you for writing this.

    I am interested in interviewing you for my own blog (my son is Autistic and I'm being tested as an adult as well). If you are interested, please email me: bandiadubh at gmail dot com
    http://onequartermama.ca

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    1. I would be more than happy to be interviewed. :) I'll send you an email.

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    2. No pressure, but I'm not sure I ever received an email, so just checking back in case in ended up in my spam.

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  15. Thank you for putting this into words. You are a wonderful writer and are so aware. I hope your friends read this and understand you better. I am going to share it to try and help others understand. You are a wonderful writer!

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    1. Oh, thank you. And yeah, I sent this to my friends, along with a few other of my own pieces (grammar fail!!). I'm glad you're sharing it. It's good to know that you found the piece helpful. And thank you for all your kind words and compliments. They mean a lot to me.

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  16. Been there, done that. Not always at the pool. Thank you for putting it in words.

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  17. Thank you for sharing. I hope that someday my autistic son can share his thoughts and feelings this way. In the mean time, this is so helpful to understanding him just a little bit more. Your writing is beautiful.

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    1. Wow, thank you on so many counts. Your comment makes me feel very good :) But don't just hope for your son. Work for him. Teach him, whether he appears high or low functioning. It makes me happy to hear that I helped you understand. :)

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  18. Beautifully said--thank you for sharing this!

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    1. Aw, thank you. I'm glad you appreciated it.

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  19. Thank you for sharing. Non-autistic people often feel the way you do. We are just better at making excuses. I say "I just don't want to be bothered." My friends know that means stop. My cousin is autistic and cannot speak. I take him to the pool at his mother's apartment complex when he is home for a visit. He is 56. I am a few years older. He has a routine in the pool and we follow it every time. That makes him happy, so he twirls on our way back to his mother's apartment.

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    1. no offense, but i don't think it's because you're better at making excuses. i think it's because your reasons are more readily accepted by your peers because they accept that you know what's best for you, whereas with autistics they often think that they know better.

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    2. Differentnotless - I think it's more that they may not necessarily know what is causing an Autistic's withdrawal, and so they may assume that it is shyness or introversion, and not understand that it is a sensory defense.

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    3. January, I guess that comment was for you too ;)

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    4. introverted NTs may need to withdraw for similar reasons, though.

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  20. Brave girl. Bravo. I love that you not only dealt with the situation, but you were able to retell it so those of us without ASD can understand. My son has Asperger's and I hope he can attain your level of maturity and social skills some day.

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    1. The issue of 'social skills' is a little iffy for me. To me, learning 'social skills' was a defense strategy to keep from embarrassing myself - but I don't think that Autistics should be taught 'social skills' just so that they can look normal an d be indistinguishable from their peers. Social skills, to me, is another 'language.' It's learning to communicate with nonautistics effectively. Learning not to hurt anyone's feelings or be rude.
      Maturity and social skills are also not the same thing.
      Thank you for the comment. Your encouraging words made me smile. :0)

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  21. I can 100% relate to this. Although now I've left behind "friends" who would behave that way with me. I considered (wrote a list, actually) of my definition "friend", was sure I was those things, and left behind anyone who wasn't my definition of a true, reciprocating, kind, respectable friend. Thank you for your voice and so clearly showing what that scenario is like. :0)

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    1. The friends in question are, actually, true, reciprocating, kind and respectable - and respectful. They simply don't always know what the world feels like from my perspective.

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  22. Your voice gives me hope for my Little Miss on the spectrum. I love that you are sharing your perspective in this way and reaching out to others -- keep up the great writing!

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  23. Love hearing this from your point of view, we have a 6 yr old who is nonverbal and I often wonder what he is thinking .

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    1. I hope I was able to offer some insight. Thank you for your comment. :) A few good sites to check out if you want to know what your son is thinking: nonspeakingautisticspeaking.blogspot.com (my friend Amy); emmasmiraclemusic.blogspot.com (Emma, and I would suggest reading allllll of these posts from the beginning); and carlysvoice.com/home

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  24. Excellent way to spell it out. Done means done. Nothing more, nothing less. ;))

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  25. Thanks for posting this, I think your friends probably mean well but this post makes it much easier to understand what is going on for you. Lots of people are commenting that people who are neuro-typical don't understand, and that is probably true a lot of the time. Posts like this helps people see things from your point of view. I will think twice before pushing someone to 'join in' in the future.

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    1. It's good to hear that you can understand a new perspective. It is true that they don't understand, and it is true that they meant well.

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  26. You helped me to understand my son better. I don't say this lightly. He is seven, came to us at two weeks, diagnosed at 16 months, adopted at two years old. I am a 56 yr old mommy and he is my heart. I will now be much more careful with what I want him to do. I will also instruct others to let him be him, not what they may want him to be. Bless you, sweetie, you taught me so much through this~~~

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    1. I'm so glad my writing affected you in this way,. Thank you for sharing <3 Bless you and your son! You are an awesome parent.

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  27. Thank You.
    I cried when I read this. The entire scene sounds like me to my son. And your actions are almost identical to his. Now knowing this I can move forward and learn. As I sit here crying. I learned. I am soo sorry you ever felt this way. And when my son comes home from school I WILL immediately apologize. What insight. I wish you all the best the world has to offer.

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  28. I have referred to your fantastic blog post in my own blog. http://disabilityableismautismandmotherhood.blogspot.com.au/2013/08/musings-on-friendship.html

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  29. I try to make everyone happy too, only I dove in as they suggested, and ended up slamming my head on the bottom of the pool...

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  30. Thank you for helping me understand. My sister has aspergers. I don't know how to communicate with her very well. She's my older sister. She does things that are a bit socially awkward and I don't like when people say mean things about her, and I don't know weather I should correct her or let her be. She gets aggressive easily as well. She hits when I scold her, or she gets in my face. I try to be patient but I just want to help. I don't know what I'm doing though.

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    1. What a wonderful and loving sister!!!! You are already doing a great job!!

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  31. Awesome...love it!!!! So much inside

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  32. Great post. I have two sons on the spectrum, and think I can read them, but it really is hard for neurotypical people to try and understand anyone on the spectrum. Keep writing, we need educators like you. Hopefully more people will read this and start to learn. ((HUGS))

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  33. Thank you. You've given me a glimpse of what might be going on in my own daughter's head. She's 4 and partially verbal. (Speaks when she wants to.)

    It's hard for a parent to try and get everything right for your kid. Double that if they don't want to talk.

    Thank you. I know those two words probably won't mean much to you but it's all I can say. It's all the language gives to show gratitude, even though the intensity I feel falls short of any word.

    Thank. You.

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  34. Thank you so much for writing this. It helps me understand how my son might feel in certain situations. I'm impressed how understanding and patient you are with your friends. Hopefully, they will learn to be more like you!

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  35. I've heard of the spoon thing before, but hadn't applied it to people with ASD until now. It makes perfect sense, and I hope that I am doing ok with my daughter, who gets restless when she's had enough of something. I've learned the cues that she shows as she is non-verbal, and we leave the situation as soon as possible when she starts to behave in a way that indicates that she's had enough.

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  36. it's one thing a lot of people don't get...and it's tough to describe, to put to words...but people on the spectrum can both want to be with people and yet feel very uncomfortable with people at the same time...it's a tough dillema, and you put words to it perfectly here, thx for this post.

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  37. Hi! My name is Tammy and my son has Fragile X Syndrome.(A genetic disorder on the spectrum) He hasn't been diagnosed with autism but he has autistic like behaviors. Because he had the FXS diagnosis before it was known to be on the spectrum some doctors will say he doesn't have autism while others say he does. Confusing I know but it's our truth. I am telling you all of that because i wanted to share a story from when he was about 3 years old. My boys both loved to go to church but if it was crowded my youngest son would flip out. FXS is like autism and though he "looked" normal he wasn't. Aussie would go straight to his Sunday school class door EVERY sunday but he wouldn't go inside. He couldn't. I could see the struggle in his little face every week. It would break my heart. Many people in our family still didn't "get it". That he was different. That he was unique. That he needed space and time that other don't. My ex husband said to me one day go with him and see if he'll go and stay. I held his little hand and walked through the door with him and he went in. But he wouldn't go in if I wasn't there. So I decided to become the Sunday school teacher for his age group. As long as we were going to that church together I taught his Sunday school class so he "walk" through that door. I don't know why it made him more comfortable to go in there with me. My dad would do things with him and he began to come out of his shell and enjoy being with people but in 2006 he died and my son has retreated back into his shell. I don't know how to help him again he won't let me. He's angry with me because he still to this day believes that I "let" his poppi die and that he alone could have awakened him from his "sleep". I wish that more people with autism could voice their inner struggle like you do. With elegance and grace. Thank you for sharing your story!

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  38. BEAUTIFUL.
    And just insert "museum" or "shopping" or anything else for swimming, dear...and be glad you've figured this out now and not later like those of us finally "getting it" in their forties, basically through raising spectrumy children by our spectrumy selves. Good job standing up for yourself and schooling us all. Love

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  39. Kitt you are an amazing person with a very special gift. The way you put your experiences into not only thought provoking, but eloquent words to help parents/family members understand is amazing. As a parent to a child that is not only in the Aspberger's spectrum, but also has severe ADHD, O.D.D., a pervasive mood disorder and borderline OCD, this helps me understand what he could be feeling when I myself get overwhelmed by his behavior.

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  40. Wow. Just wow. You have a gift. You can open the eyes of those around you who are desperate to know how to be a better friend, parent, and support. Like me. Don't ever stop writing Kitt. :)

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  41. Wow! You can express all those feelings I have but can not put words on.

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