“Burden”? I Don’t Think So.

The roller coaster I call “autism” is less actual and more a description of my emotions, expectations and judgments surrounding specific things such as communication differences, internal issues, pain perception, sensory issues and the different ways in which Emma takes in information as opposed to the way my (more often than not) non-autistic brain works.  (My friend, AspieKid calls brains like mine NT-NOS, which I think is a hilarious and fitting acronym.) It is a “roller coaster” of my own design and construct.  A roller coaster being an accurate description of my emotional state, something I’ve grappled with my entire life and certainly well before I ever met my husband and had children.  Suggesting “autism” is the root cause for those pre-existing twists and turns my emotions tend to take or pinning the psychological upheavals I’m experiencing onto “autism” is not only wrong, it’s dishonest.

The truth is, I’ve always been a bit high-strung.  I live in New York City, a city whose inhabitants wear their neuroses proudly.  Neuroses in New York city are treated the way a runny nose is looked upon in the mid-west.  No big deal.  New Yorkers have melt downs at the drop of a hat.  I’ve seen fist fights break out between grown men in the middle of an intersection because of a perceived insult, people routinely scream at each other and cut each other off while driving.  Moms pushing babies and toddlers in Hummer-sized strollers wield them like tanks plowing a path for themselves along clogged sidewalks like Moses parting the Red Sea.  People think nothing of getting into loud arguments with lovers, neighbors, friends and strangers in the middle of the sidewalk, forcing pedestrians to walk around them.  It’s a city of ids and super egos.  It’s a city that is (perhaps) an exaggerated version of what one sees anywhere in the world.  People are capable of some pretty dreadful behavior.  Add a child with a different neurology to that already fragile, high-strung mix and you’re going to get some interesting results.  To then conclude that autism is to blame, defies all logic.  No one would do that.  Yet people blame their bad behavior, their inability to cope, their sadness, depression and general irritability on their autistic child all the time.

Suddenly it’s autism and Autistic people who are a “burden” to society.  Autism isn’t a “burden”.  It’s the negative views of autism, it’s the autism = untold horror, it’s the perception of autism and the lack of understanding and services, the lack of training and programs in our schools so they can help our Autistic children learn in a way that will ensure they flourish.  The “burden” is not our Autistic child on society.  The “burden” is the lack of support and adequate help families need so they can better support their child, giving them the sort of assistance  they need to thrive and flourish, a child who will one day become an Autistic adult and, in an ideal world, an active member of society.  We have to move away from this idea of Autism = burden.  Autism = tragedy.  Autism = _______ fill in the blank with a negative word.  We need to abandon our preconceived notions of what a non-speaking Autistic child cannot do.  We need to open our minds to the idea that our children are capable of far more than we may believe or can fathom.  We need to begin looking at what is good about Autism and the countless ways in which Autistic people can and do contribute to this world.  We need to remove the stigma and negativity and replace it with a more balanced and yes, positive view.

Imagine a world that includes Autistic people, accommodates Autistic people and stops shunning, restraining and abusing them.  A world in which it is not okay to have seclusion rooms and restraints, where a non-speaking person is treated with respect and without prejudice and where it is not assumed that because they do not speak they have nothing to say.  A world where people finally understand the burden isn’t the Autistic person, whether child or adult, it’s the lack of services, the judgments and the scare tactics being used.   Autism is big business and there is no better way to ensure dollars continue to pour in than when we are terrified. Let’s change that.

Having a child is joyful, exhausting, frustrating and the single most extraordinary experience a human being can have.  Having an Autistic child is joyful, exhausting, frustrating and the single most extraordinary experience a human being can have.   One can say that about a great many things in this life.  Let’s stop blaming Autism and our Autistic children for the ills of the world and the bad behavior displayed by people.

Emma and her infectious laugh

Em

20 responses to ““Burden”? I Don’t Think So.

  1. i am frequently in awe of zack. . . If only the rest of us could tap into the way he sees the world! The few insights i get are nothing less than inspiring!
    I have been wondering recently what zack’s idea of father xmas etc is . . . And I’m still not sure . . .
    This week’s announcement from zack
    ‘i Will be father xmas on 25 December. I Will wear red boots, my red clothes and my father xmas hat.

  2. Just your description of NYC gives me an anxiety attack! And, after all that, to juxtapose the blaming of Autistic children for people’s bad behavior? Brilliant, Ariane.

    • I had the unfortunate experience this morning of sitting next to a young man who, despite having a few inches in which to move over so that I could comfortably sit too, he refused. I said to him, “You know you could move over a little.” And he replied, “Selfish bitch, why should I?” To which I laughed and said, “I’m selfish?”
      And he responded, “Asshole.”
      As the subway rumbled along I thought about how we love to blame and how (especially after the hearings and testimonies last week) tired I am of the blame. So that was where the post originated!
      And you know, that miserable guy has to live with himself for his entire life, whereas I got to go to my studio and write and then create beautiful jewelry in 18 kt gold! 😀

      • Wow, is that “New York directness” at play? You would only say those things here if you intended the next step to be a physical fight, I have not heard anyone being that rude in years!

        On a completely different note, I love all the photos of Emma you put up, I have an 11yr old (NTish) daughter as well as a 6yr old ASD son.

        • Well it isn’t all that rare in New York city to have such an encounter, which is why friends will always caution you to not speak to anyone on the subways. I usually don’t. 🙂 When I moved to another seat another unsuspecting woman sat down and he did the same thing to her, at least I knew it wasn’t personal, just a miserable human being. Amazing how many of them live in New York City!

          Our girls are almost the same age. Em turns 11 in January!

  3. I can totally relate to what you are saying. Since I’m aging (past 40 now) and my son is only five, turning six in three months, my patience, sometimes is shorter then at other times. I sometimes think I wasted it on my older children, but my youngest was not supposed to be possible. It seems like when my patience is at its worst, is when my son acts out the most. That isn’t the case at all, I do know that he is only responding to my own actions and I’m sure to him I can be extremely confusing. That confusion can lead to frustration, which can lead to a melt down.

    I lost patience with my older children as well when they were younger, but unlike my son, they could realize that mom wasn’t having the best day and would tailor their behavior to allow me less stress. My son, just doesn’t think that way and when he acts out, instead of blaming him, I look to myself. What did I say, or do that confused him? I’m far from being the perfect parent, but I’m a far cry better then my own parents were. Some days are better then others, and those days that are not quite good, typically has nothing to do with my son, because even when he’s at school, my angst is still there.

    There are times when I feel like I’m a horrible parent, when my son wants to have a tickle fight, or get a piggy back ride and I need to do dishes, or make dinner. Even when he just wants to have a conversation with me and I can’t hear him over the running water while I’m washing dishes. I feel torn. I want to be there for him, but at the same time, I can’t neglect the other things that are also my responsibility. My frustration at being unable to do everything exactly when it wants to be done causes me to sob out right sometimes. And then my son asks me, “Mommy, why are you sad?” The fact that he recognized that sobbing = sadness was such a huge thing and I wanted to give him a big hug and commend him, but I was up to my elbows in greasy, soapy dishes, so I couldn’t.

    My son makes me so proud every day. He does have difficulty with transitioning from what he wants to do, to what needs to be done (example, changing from morning play time activities to getting ready for school) and there are times when he tries to continue playing, my frustration and impatience piques and I raise my voice, which causes him great distress. I try to keep from doing that, and I’m trying to find other methods of helping him transition, teaching him when mommy says playtime is over and it’s time to get ready for school, or bed, or go to the story, then he needs to do that. It isn’t him, not fully, the emotional outbursts come from me and he echoes those in his own way. They serve as little reminders to me that I need to be more careful with what I do and what I say, because he reacts to me as if he’s an amplifier.

    I’m still learning how to ‘play this game’ and nothing in my previous parenting experiences prepared me for this one, and they are significantly different. It isn’t my son that needs to change, it is me, and hopefully I am able to figure it out before it is too late and I do some serious damage. That is my greatest fear, not only with my youngest, but it was with my older kids too. It just is more complex with him then it was with them, and I sometimes feel like I’m floundering in my own ineptitude.

    • Oh Lara, I can so relate to so much of what you write here. Well not the five kids part(!) but so much of the rest. I keep thinking as long as I want to change, as long as I’m open to changing, as long as I view change as a good thing, then I’ll be okay, because none of us are going to do this perfectly.

  4. I can’t really imagine New York. I see it on TV fairly constantly (or Toronto standing in for NY which I find somewhat hilarious) I don’t really like living in the city I do even. If I were physically healthy and could drive I would live somewhere smaller for sure. If I ever get obnoxiously wealthy I would put the majority in a foundation but leave enough for me to live further away from a city and a reliable way to get there.

    I don’t think of myself as a person who has many of the meltdowns of the obvious variety. Usually I melt down kind of silently which I gather can be even tougher and more awkward for people. (Not quite sure why but I guess because it is so quiet maybe I seem like less the problem and people are left searching for what led to that verus on wishing I would stop the more dramatic kind of behaviours of a meltdown. )

    I always feel bad after one of these because although I certainly don’t plan them I become aware that they shape the behaviour of those who care about me for quite some time. So if you could set out to have one they would actaully be better behaviour modifiers than any amount of explanation.

    My sister-in-law has a loving, functional family. Very odd really. She’s a recreation therapist and many of her friends, and some of her family are or were in health care. She’s always pretty good about giving me a roadmap of what will be happening and what to expect but sometimes things change. When I think I am doing relatively well I think I find myself as surprised as others. One of the things that always happened since she came from as Anglican a background as possible is we went to the midnight service after Christmas eve dinner. Then one year they decided kind of abruptly not to and I wound up in tears, quickly unable to articulate even why I cared that much. The entire scene kept retreating from me and then when it wasn’t I was aware how uncomfortable everyone was but I couldn’t do anything about it. It seemed to be forever until I could even speak again. I don’t know how long forever was but it felt a very long time.

    For years after that it would sometimes seem like people went to steps that were actually overkill as far as no sudden change or preparing me for the kind of inevitable changes that might go on during the course of a year that I didn’t know about. My sister-in-law was always good about it as much as one can expect but for years there was an escalation in that it seemed. I knew it was because of that incident as some of the people there had never even seen me in that kind of distress but what can one say about it? I wouldn’t even have know had I been asked ahead of time that that would be so upsetting. I sure didn’t want people upset by my upset or anxious for years that it might happen again but of course it does and might.

    I had a melt down in Toronto once. Not because it was Toronto and thus much bigger than any city I had been in outside of an airport or train at the time. Oddly enough the cause of my meltdown was I had gone with some friends who all but one I had previously only known on the internet to an autism conference. Everyone else was a parent and everyone was keen to be protective of me as far as what might trigger a meltdown.

    Supper time arrived on the night everyone would be there. (The friend I had actualy known in real life for a few years at that point had come early and stayed past the conference so mostly it had been us) We went from place to place. Most were too noisy but some I probably could have maybe tolerated but they were all quickly deemed unsuitable and as each new place went my ability to cope with any of it went crashing down. In the end we would up eating pizza in someone’s hotel room which was probably not the evening people who might never see on another might have wanted.

    • When I went to the Autcom Conference a group of people sent out an email suggesting dinner and I knew I wouldn’t be able to handle it so didn’t even pretend that I could. I declined and it turned out it was similar to what you’ve described and half the people ended up going home without eating at all!

  5. Maybe if we start petitioning early enough, we could get them to add NT-NOS to DSM6. 😉

  6. NT-NOS is the best term! I use it all the time!
    This is a really good one Ariane!
    oxox

  7. It’s really that simple Ariane, “Having a child is joyful, exhausting, frustrating and the single most extraordinary experience a human being can have.”, I have said things very similar to this. No matter the neurology of the child, our job as parents is to raise those children with the utmost love and care, keep them safe and teach them right. I love your posts, and I am so glad someone out there tells the world how it is. Very proud of you. By the way, the jewelry you design are very exquisite and beautiful and so my kind of designs, I’ll buy some as soon as I can afford them. Thank you for all you do, I am so proud of you.

  8. You are an incredible person.

  9. What a brilliant post. I live in a small country town of 2500 people in Australia. Ironically yesterday I wrote a blog post about a similar thing. Understanding Autism. Than I came across your post and realised that on the other side of the world in the hustle and bustle of NYC that you wanted the same thing for your child living with autism.
    Much love from across the miles. MTA.

  10. Pingback: “Burden”? I Don’t Think So. | Appalachian aspie.

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