The neurodiversity fence

Written by Beth Ryan

ONeuordiversity is not about writing pretty blog posts that appeal to the masses.  It is about the human rights of people of all neurologies.  It isn't about picking the parts that make you feel good.  If you want to make a difference.... GET OFF THE FENCE!  loveexplosions.netne of the criticisms that is most frequently hurled at me by other parents of Autistic kids is that I judge people.  I freely admit that I do.  Often.  Constantly even.

But my judgments don’t come from a place of wanting to elevate my own self esteem as so many of these criticisms imply.  I am ever engaged in judgment of what will hurt or improve my daughter’s quality of life.

I’m not perfect.  I’ve done and said and written things which I know have been hurtful to my daughter and her Autistic tribe.  One of my greatest regrets is the fact that I spent so much time fighting AAC and trying to force my child to speak.  That cost her more than I will ever know.

The other criticism I get most often is that I am “PollyAnna” about Autism.  That I want to sweep the challenges my daughter and family face under the rug.  While I choose not to publicly share details which I feel could hurt my child or family, I do not ever deny that some things are really, really hard.  But I cannot think of any obstacles that could not be overcome by a shift in the way disabled people are supported, accommodated, and spoken about.

Recently, there was a stir caused by a very popular blogger’s comment:  “I’m also going to remind you that even in the midst of all the positivity, you’re not human if you don’t have moments where you wish to god your kid didn’t have to struggle and all you want to do is tell autism to f@%k itself. That’s the secret that no one will talk about. But it’s what makes us real, and it’s okay.” 

I judge.  I judge.  Yes, I do judge.  THIS hurts my child.

And I’m judged.  I’m not “human”.  I’m not “real”.

My child is Autistic.  She IS Autism.  Telling Autism to go fuck itself….that’s telling my kid to go fuck herself.  This has never crossed my mind.  Not because I am perfect.  Not because I don’t have bad days.  Not because I don’t want things to be easier for my child in many ways.  Not just because I love my child and this thought would be a betrayal of that love.

Because my child is NOT the problem.  The problem is the way the world responds to my child.  And on the days that I struggle–the ways that I respond to my child.

Being a parent to ANY child is hard.  There are days when bedtime cannot come soon enough.  You don’t have to have an Autistic child to know that this is true.  Those are the days where I succumb to my human weaknesses.  I get frustrated.  I say the wrong thing.  I react the wrong way.  And my reactions make life harder–for my child and for me.

I’m privileged in that parenthood was a choice for me–I do realize that it is not a choice for every person.  When I decided to become a parent, I signed up for the ups and downs.  I signed up for the happiness and the heartache.  I signed up for all of it.  I’m accountable to my child.  I’m accountable to myself.

I judge people.  I do.  I also judge myself.  I’m responsible for judging myself and for doing better when I fail.

I’m responsible for creating a world in which my child can thrive.  I’m responsible for judging the things that stand in the way of my child’s quality of life.

I’ve found that this responsibility isn’t always fun.  And it certainly doesn’t win me popularity.  But we can’t make things better if we don’t talk about the things that are wrong.  I’d love to write a blog which everyone loves and celebrates.  I would love to not receive hate mail.  I’d love to not rock the boat and be friends with everyone.  I’d love it if everyone would think that I am just the bees knees.  Because it isn’t fun when what you say and write is not popularly received.

But I love my child.  And I will stand out in the cold and rain for a lifetime if it means that she is spared even a moment of facing the elements.  Not because I am strong.  Not because I am brave.  But because I’m a mother.  And that’s what mothers do.

My child is more important than stroking the egos of other parents.  Every single time.

My child is more important than my desire to feel liked.  Every single time.

My daughter doesn’t have the luxury of riding the fence.  So I’m not about to climb up and ride it at her expense.

 

8 thoughts on “The neurodiversity fence

  1. Also, I think there’s a distinction which gets lost in the pleas to “not judge,” between judging people, and *having judgment,* and using your judgment to *rightfully* judge what kinds of reactions and emotions and personal narratives are helpful or hurtful to other people and to the kind of world you’re trying to build.

    And maybe this is from 30 or so years of ALWAYS having to examine my emotional reactions because it was so apparent that they were so different from those of everyone else around me, but I just really don’t understand people who even CAN just refuse to do that.

  2. Beth…friend…you ARE brave! This is one of the many reasons I LOVE you. This was much needed. Yes…we signed up for every bit of it… Just like our Parents did with us! Thank you thank you thank you!!!!

  3. I posted this in response to said debacle and I wanted to share it because while I very much appreciate the work of said blogger who is trying, I think said bloggers one greatest failing is that she is a little TOO PC at times. She makes great points–but by trying to not lose one or the other voice, she ends up, as you say, straddling the fence.

    I think THIS is the next big conversation in autism and I wanted to share my response with you and hopefully if enough people open up this conversation, then an important distinction in self-advocacy *CAN* be made that doesn’t pit group against group or camp against camp. Rather, we can start targeting functional vs. dysfunctional in terms of the conversation about autism and the support of those with autism, those parenting someone with autism, those educating the autistic populations, or otherwise serving them:

    ….

    “It’s a BIG DEAL and I think if we were able to break this down more fully, it might make a BIG DIFFERENCE in the community:

    The difference between Judgment and Analysis:

    When we judge, we are are making a legal and moral statement about the behavior and character of a human being. The subject up for debate is the person behind the incident in question.

    When we analyze, we are making a statement about the efficacy or of a behavior, feeling, or situation. In analysis, the INCIDENT, not the person, is what is being discussed and reviewed.

    In judgment, we look at the fabric of character, of person, of the core structure and foundation of another human being.

    When analyzing, we can break into pieces each belief or behavior, it’s antecedent, and it’s outcome (you know, kinda like the ABC in ABA!), and we give it a critical analysis separate from the human being possessing said behavior.

    Until we can figure out the difference between the two, the community is simply going to continue the infighting.

    We can’t fix what we refuse to acknowledge is disordered or wrong.

    We can’t acknowledge what doesn’t or isn’t working if it doesn’t get analyzed.

    We can analyze a behavior, a belief, a misnomer, a myth and find it wrong WITHOUT passing judgment on the person who pervades the myth, does the behavior, expresses the belief. We can be GOOD PEOPLE who make mistakes. We can have a conversation around an incident without it being a reflection on the person.

    That’s the crux of advocacy, isn’t it? To analyze the things which have come about up to this point and to bring to the forefront those that need to be re-examined? To turn them over and to look at the outcomes? To see which strategies really are functional and which are dysfunctional? And to realize that some areas are going to pass muster, some will just be, and some will have caused more harm than good.

    If I can name the single most important piece of information from my college education in human development, it would be this–that all behavior serves a purpose, including dysfunctional behavior.

    If we could point out where dysfunctional behavior goes wrong and help one another through to healthy coping mechanisms without fear of being hailed as the “the harbinger of judgment,” without fearing to lose our audience to our “unsupportive ways,” won’t we have better served EVERYONE in the community, parent and autie alike?

    It’s not judgment if we are correcting something that needs correcting as long as we leave the fabric of the person in tact. Once upon a time there was NOTHING wrong with a man spanking his wife. Imagine the looks on the face of thousands of men when it was suddenly suggested that such a BEHAVIOR was wrong. I am sure they felt targeted, harrassed, offended to have their behavior flagged as inappropriate, and ultimately harmful. We have a hard time not projecting our criticisms to people rather than behaviors or being able to separate criticisms about a dysfunctional mechanism as NOT being directly reflective of whether we are, in fact, good, worthy people.

    If we REALLY want to advocate, well then some people’s feelings are going to get hurt. If no one gets offended in the process, then no one was doing anything wrong. If there is no injustice or wrong-doing, then why on earth are we advocating in the first place?

    This IS the process of examination.

    We can be respectful without being being a pacifist.

    It *is not* judgment if we are standing ground on something that matters. It is simply having boundaries.

    But we don’t grow unless we can step back for a moment and realize–it’s not offense I should take that something unbecoming of mine was pointed out. Perhaps, it is a cue for me to rethink things. To turn things over and look at it from a new side. Even if I don’t agree, what lesson can I get from empathetic listening to someone’s perspective on something I am doing right or wrong.

    I think THIS is where our community so desperately fails.

    I read a blog post today somewhere else and it was so ANGRY. I get angry sometimes, too.

    But it’s misplaced anger.

    It’s anger because we all are feeling judged.

    Somewhere, somehow, we need to define the process of judgment and analysis in advocacy and understand that to be an advocate, to be in a tumultuous community who is fighting to CHANGE the status quo, that dysfunctional behaviors will be highlighted. And we may all at some point be GUILTY of those behaviors.

    We have to at least own them outwardly in order so we can move forward as a community.

    I can say being on both sides of the fence–autistic adult and parent–feet firmly planted, not straddling strong emotions on both sides, that I have gotten sick to death of trying to teach people the difference between the two so that both of these facets can come together. I just don’t have the energy to make enough of a difference. So I allow people to say I judge. Because then it’s one less battle I have to fight–the battle to defend whether or not I’m judging. My energies are finite and I am just sick to death of wasting them on the side arguments like “this is judgment, that is self-righteousness, this is selfish, that is ugly.”

    WE MAKE MISTAKES.

    But what if…for one moment…we could put aside our defensiveness and exchange for the word judge, to analyze. What if we could put our pride on the side for a minute and just….listen without assuming that we are all under attack. To do our ever loving best to put more energy into objective listening and empathetic understanding than subjective hearing and defensive replies.

    To understand we serve our entire community better if we take constructive criticism as help and support rather than contemptuous judgmental commentary?

    What if we realized we were wrong–and that we are still good people doing our best? Wouldn’t we BE uplifting each other if we took advice for what it is? Wouldn’t we BE adding to the constructive argument if we stopped going by ego and started going with our minds? Stopped trying to placate because we are afraid of audience rebellion and stood strong for the most important points–even if we, too, are in the process ourselves of trying to walk that journey?

    • Great job explaining what was and has been happening. People do just need to put pride aside and listen…NO ONE is right all the time. If you don’t think you can learn anything new, well, you might as well not even attempt to interact with anyone else. Thank you…really good analysis, April.

  4. Thank you for taking a stand. For working to change the nature of the conversation. For working to make people see what is happening & what needs to change. No matter how much crap may get slung your way, KNOW THIS: you are respected & supported & appreciated. We are RISING with you & the more of us that RISE, the more we can accomplish. The momentum is happening. Even if it’s one person at a time, it’s like ripples in a pond & the word begins to spread exponentially. Peace, hope & love ~xx

    (PS: I help moderate a group on Facebook called Adults with Asperger’s & we do read your blog & spread it around, we know the good work you are doing.)

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