perspective

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{image is a photo of the infamous “dress that broke the Internet.” While many saw it as white and gold, others were equally convinced that it was blue and black. To be safe, I’d go with minimal accessories and a nude shoe. You’re welcome.}

The two conversations that follow are purely hypothetical. Neither actually happened, but some version of both happens quite regularly. 

Guy at the office: I can’t figure out why my wife is so pissed at me. Just because I told her I don’t want her sister coming over because she’s a bad influence on the kids …

Woman at the office: Hmm, maybe she feels like you’re slamming her sister.

Him: But I’m not.

Her: I’m just telling you, as a sister, a wife and a mom, that’s unequivocally how I would interpret what you said. There’s a pretty good chance that’s what she’s hearing too. You said you couldn’t figure out why she was pissed. I’m telling you, odds are pretty good that’s why.

Him: But that’s not what I said. Her sister is fun; she’s a great girl. All I said was that I don’t want her around our kids. So why is she so pissed at me?

Her: Is that a real question?

Parent of an Autistic child, somewhere on the Internet: I love my kid, but I’d do anything in my power to cure his autism.

Autistic adult: Then you don’t want the child you have.

Parent: I would never say that. I want my child more than anything. I just don’t want him to have autism. But anyone can understand that. Autism is awful.

Autistic adult: I’m telling you how I hear what you just said. If you don’t want your child as he is, which is Autistic, then you don’t want the child that you have. You want a different child, one who is neurotypical.

Parent: I didn’t say that. You’re putting words in my mouth. I said that I love my son. How dare you question that.

Autistic adult: I’m trying to tell you how your words are interpreted by an Autistic person. When you say that you want to cure him of one of the most significant contributors to his identity, I hear that you don’t want him to be who he is. And when you say that autism is awful, I hear that *I* am awful. Because my neurology isn’t something that I can separate out from who I am. Autism is me. And your son.

Parent: You know nothing about me and you don’t get to speak for my son.

Autistic adult: What I know is that you are the mom of someone like me, that you love your kid, and that you’re saying something inadvertently hurtful about us both. I’m not claiming to speak for anyone; I’m just trying to ask you to listen to how your words are interpreted. If how they’re heard is indeed so different from how you intended them, I’d think you’d want to know.

Parent: Why aren’t you listening to me?

Autistic adult: Is that a real question?

To reiterate, neither of these conversations are real, but both are, I believe, pretty reasonable representations of the way in which we consistently miss opportunities to learn from those who know what they’re talking about. So what if we try again?

Guy at the office: I can’t figure out why my wife is so pissed at me. Just because I told her I don’t want her sister coming over because she’s a bad influence on the kids …

Woman at the office: Hmm, maybe she feels like you’re slamming her sister.

Him: Oh, man, you think so?

Her: Uh, yeah.

Him, calling the wife: Hey, babe, I hope what I said before didn’t sound to you like I was slamming your sister. I didn’t mean that at all.

Her, fuming: Um, yeah.

Him: Oh God no, I love her. She’s a blast to hang out with. I was just thinking that she tends to curse a lot and the kids pick up on that.

Her, no longer fuming: She does swear a lot.

And on they go, ultimately deciding to talk to the sister about cleaning up her language and planning dinner.

Next, we return to our parent / Autistic advocate conversation …

Parent of an Autistic child, somewhere on the Internet: I love my kid, but I’d do anything in my power to cure his autism.

Autistic adult: Then you don’t want the child you have.

Parent: I would never say that. I want my child more than anything. I just don’t want him to have autism. But anyone can understand that. Autism is awful.

Autistic adult: I’m telling you how I hear what you just said. If you don’t want your child as he is, which is Autistic, then you don’t want the child that you have. You want a different child, one who is neurotypical.

Parent: Oh, wow, that really hurts to hear. I’m so sorry that I made you feel that way; it was certainly not remotely my intention. I really appreciate you offering your perspective. You’ve given me a lot to think about. Thank you.

Autistic adult: You’re welcome. And thank you for listening.

Parent: How could I not? If I want my son’s voice to be heard then yours must be too. Do you think we could talk some more sometime?

Autistic adult: Of course. Feel free to message me.

And on they go, with an open door to a new friendship that will be wonderful for both of them, and benefit no one more than the mom’s son.

Every time we are faced with a perspective that forces us to reconsider our own, we have a choice. We can retrench, cover our ears and yell, “Lalalalala,I can’t heeeeeear you” or we can open ourselves up, take in another viewpoint, and say, “Thanks for caring enough to tell me what you heard, especially when you knew it wasn’t really what I intended to say.”

As hard as it may sometimes be, I’m going to go with the latter every time.

 

 

10 thoughts on “perspective

  1. My son is on the spectrum. I love his perspective and how he interprets the world. He doesn’t need as much support as some, but still struggles with debilitating anxiety and sensory over stimulation. While I’d never want to change his little brain, I’d do anything to take the hurt away. My son also has ADHD and takes Concerta. I get flack from tons of people about giving him drugs because it isn’t “natural”. I follow the research closely and know that when kids with ADHD take a stimulant their brains function more nuro-typically. He functions better, he feels better, he’s happier. I compare it to not giving a diabetic child insulin because it isn’t “natural”, when really it is helping their body function correctly. So I very closely follow research into how autistic vs adhd vs neuro typical brains work. I believe understanding where the differences lie is so important.

    So this is where all my logic seems to fall apart on me. I very much hear what you are saying about autism being a part of my son. It absolutely is and is very much a part of his unique and creative mind, and I never want to take that away. But I do want to take away the hurt and struggle that he constantly endures. What if they do find a treatment for these symptoms that are a part of autism? Is that a cure? I wonder how I’d feel if the treatment also took away some of his strengths that are also a part autism. I wonder what he would want to do in this situation. Is that what I’m doing when I give him the Concerta? (For the record, these are the questions I struggle with everyday and I know there are no easy answers.) At this time, he and I do not think the Concerta is taking away any of his personality, but making it easier for him to be himself.

    Sorry for babbling on. This is one I struggle with. I long for a treatment to help him through his struggles, but doesn’t make my little boy disappear.

  2. The difference between your two scenarios is that the right response in the first scenario is for the man to listen to his colleague’s perspective and then communicate with his wife. Ultimately, though, it’s his wife’s perspective that matters, not the colleagues. For example, the wife might say, “I think my sister is a great influence on the children and I need a break and she’s will to take them for the day.” Yes, that response might lead to a different set of conversations, but the key is communication.

    Relying on the colleagues perspective as being representative of the wife seems problematic, to me, and I wouldn’t be much pleased if my husband was substituting a female coworkers’ perspective to understand my views, rather than my own. And, I’d be further disturbed if he did so because he presumed that another woman, who doesn’t know me, would have a better understanding of me (because she’s a woman?) than he did. That’s why these analogies of listen to the Autistic adult to understand one’s child fall short to me. Yes, listening to other people’s perspectives might give insight that one can use to try to understand a child or a spouse, but not necessarily merely of their status as part of some group (Autistic, Woman, African-American, . . . .).

    (I always hated the analogy that telling your child that you were bringing home a sibling was equivalent to telling your wife that you’re bringing home another wife, too).

    • the ‘right’ response is always going to be to take the insight offered and apply it to our own lives. there is no generalized gospel other than respect.

  3. I thought the analogy was poor too.

    I know a lot of people who wish their children, their friends, their family members did not have certain characteristics or issues. Autism is a term to describe a batch of the that can be difficult to tolerate. Those behaviours can be an issue even in non autistic people. I have friends who live their children dearly but wish those children did not have those disabilities, or behaviors, or other characteristics. It’s a statement of fact. One can wish ones child is not cognitively delayed, could do more for self, got a long better with others, did not require so much additional work had a better chance of being self sufficient and certainly all parents fear for their children who are likely never to be able to care for themselves and they wish otherwise. Many do so even as they look for the best way to procede to bring their children into adulthood and separate themselves fro the children before death does so., giving the best possible preparation for when that happens.

    • respectfully, i wasn’t trying to make a perfect parallel, i was trying to illustrate two exercises in listening / perspective taking / incorporating another perspective into our approach with those we love (and testing it against their reality as part of doing so.) as kimmie said, ” its just an example of hearing people out with a similar perspective to solve problems.” it’s about being willing to hear one another and understand / take responsibility for how our words / philosophy affect others rather than justifying them at their expense.

  4. zb – the problem is these two situations are different. its just an example of hearing people out with a similar perspective to solve problems

    it is up to the kid to decide how to view their own autism, not the stranger autistic adult, but also not the parent… but a child views their autism and themselves is shaped by how a parent/special ed/doctors/therapists raises them and treats their autism and sometimes that affects their own selfview and self esteme? and parents can learn ways the way people speak about autism can affect that by listening. the way parents speak about autism isnt always in a way that an autistic child is made to feel good about themselves

    there is this tendency to make autism out to be a seperate part of the person when raising a child, parents and profesionals do this, and then make autism the bad guy.
    if you raise a kid thinking their autism is seperate,from every interaction they have focusing on it, thats what they will think, but then comes the things people badmouth (stimming,talking strange, not being interested or able to keep up with conversation) and often what they want to fix. and even

    whether you view your autism as part of you or not, autism heavily affects relationships with other people, it affects how you understand and interact with people in a relationship. it also affects your behaviour and how you respond thing things around you, which can also affect those relationships. thats not a person to person thing, it is a huge part of the actual diagnosis for the disorder is that it affects in interactions with others in many possible ways. and the way autism is presented to you/the way you grow up understanding your own autism often affects the way you view your own relationships.

    so the way it should be presented to autistic people from non autistic people is very neutral. and when things affect the parents they should be very specific about whats being badmouthed.

    im not sure if any of this makes any sense

    maybe my own example with my mom?
    when i had trouble with self care things, and when i was younger and couldnt pronounce words correctly, it wasnt because my autism was bad and i needed to be rid of it, it was because some things were going to be more difficult because of it. it wasnt good or bad for her, and she didnt tell me it was bad for me, just that it made some things harder.

    when i had meltdowns turn violent/self harm, the frustration was understandable and acknowledged but she made it clear it was the way i reacted that was a problem, not that i got that upset over something stupid

    a lot of money is being spent on therapies, she didnt make it that my autism was expensive, it was therapies were expensive and not covered by insurance and

    she was also very honest that my rocking, the way i played with toys, my pacing by the water and the way i played with water, that things i enjoyed were also affected by my autism.

    but best, when people were jerks to me due to something autism specific, likewhen i had one of my friends moms even say she didnt want me around her daughter after i had a public meltdown, it was them that were wrong, not my behavior drove them away, they didnt try to understand why i had the meltdown or why i reacted like i did.

    for the other part, i can give my friend from work as an example, he was raised that a lot of the autistic parts were bad and hard on other people. he holds his non autistic friends up now like saints for dealing with him,(he has an unhealthy view that he should change to please others and the ways he cant change, other people shouldnt have to deal with which makes him view people who do like that) and constantly apologizes for being upset.

    but then his childhood, when people stopped being his friends as a kid, people put blame on him though, but indirectly by blaming his disability. the autism was the bad part, not that those people werent happy with the friendship and/or didnt put effort in to learn. when he had meltdowns, his mom painted it as bad that he was upset, not that the taking it out on her/others was bad. and it often blamed his autism.

  5. I am fully in agreement that listening to other perspectives and trying very hard to apply them to the situations you yourself face is vital, and even more vital when you know that you have a good guess that someone else has different perspectives than you do.

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