Perspective Taking

A blog posted on Psychology Today posed a question that I've been considering myself:

Why does society only consider the family's trauma of living with a person on spectrum, not the trauma the person who is on spectrum lives with daily?

Which is a perfectly valid question.  Watching my kids, I know that I am aware of only a small percentage of what they face every day.  Due to their language problems and anxiety they relay only a small part of what they face.  Watching Nathan, who has only words to ask for a few things-food, some actions-I know he is SO frustrated with his inability to communicate, and inability to discuss strategies for dealing with his internal issues.  He is constantly bombarded with impulses and sensations.

Last night, Nathan had a horrible gut bug with vomiting for hours.  Now he has diarrhea.  He couldn't tell us when he was about to vomit, not even call out 'mom' to get my attention.  After he would vomit into his bucket he would say "NO more bucket!"  I think what he was saying was he didn't want to need the bucket anymore.  But I don't know exactly.  I know what it feels to vomit for hours, exhausting every cell in your body.  Only to collapse into sleep and be awakened by the rising gorge.

But I don't know what it's like to have autism and have nausea.  To not be able to moan your discomfort and have people sympathize.  To have difficulty understanding when someone is expressing sympathy and that that sympathy should be comforting.  To be at war with your senses, and then face an almost overwhelming assault.

This digression is to point out two blocks that non-autistic people face.

First, we 'talkies' value speech too much.  If you can't whine, complain and moan out loud it is hard to identify with you.  Vomiting is a bad example, because just watching someone vomit elicits a gut response (literally and metaphorically.)  But what about that antsy feeling when you can't sit still, you just have to move?  When you say/do something that makes you cringe when you realize what you said/did, but you were too caffeinated/tired/stressed to stop yourself?  The frustration when you can't stop yourself, but you can't explain why. So many things that I don't know inside him, but he faces every day.  Sometimes with us telling him to stop the unstoppable.

Second, it is hard to identify with someone you view as too 'other.'  Marginalizing a group chronically makes them 'other.'  Remember when black people were considered nearly another species?  No mixing of the races?  That marginalization was so severe that is still has never truly left our collective consciousness.  But now it is frowned upon and there are laws that are supposed to protect us from it.  People have a hard time identifying with autistics because they seem so 'other.'  Non-speaking and weird-acting to so many.  For so long kept out of sight.  Even ten years ago sent to special schools - out of sight and out of mind.  Still we parents fight to have them included in mainstream classes.  And for the foreseeable future will there be no laws in place to force inclusion in the workplace and protect their jobs from people who view them as 'other.' People are fired for poor social skills and face bullying EVERY single day in the workplace.

We are making progress with the 'otherness.'  But the goal of equality is still so far off.

I am proud of autistics making their voices loud, even when they make me angry and defensive.  They need to continue to be loud and force inclusion on others.  They need to keep making me angry and defensive so that I can step away and think about why I reacted that way.  All people with 'otherness' need to be visible and we need to protect that right to be visible.  Because it is only with exposure as part of the group that 'other-ness' becomes human-ness.

Parents, caregivers and other people who love and honor autistic people need to stop making them 'other' with their speech.  They need to point out the trauma that autistic people face every day.  We need to point out their sameness and make it clear that accommodations are not optional.  That everyone deserves acceptance.  We need to honor the trauma that they face every day because they do face it every day.  They never give up.  We shouldn't either.

At the same time, parents and caregivers need to acknowledge the stress this fight throttles us with.  I saw a meme the other day that said "Saying that you can't be unhappy because someone else has it worse is like saying you can't be happy because someone else has it better."  It is hard being a parent.  It is harder when you have to fight the system for your child.  It is hard watching your child fight through so much.  It is hard dreaming other dreams for them.  It IS hard, and it's okay to feel sorry for yourself sometimes.

But you have to remember that your child and every person with 'other-ness' lives that fight every second of every day of their life.  And that is the hardest.  And you need to honor them for it.

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