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  • Home
  • Introduction to Autism
    • Characteristics
    • Common Myths >
      • Negative Narrative >
        • Autism Controversies
  • How to Interact
    • Stigma & Discrimination
    • What to Avoid
  • Advice for Parents
    • Visual Supports
    • Autism Treatments
    • Explaining Autism to Kids
    • A Mother's Story
    • My Sibling Perspective
    • Autism Explained for Kids Site
  • All Kinds of Minds
    • Culture of Autism
    • Late Diagnosis
  • More
    • How to Assess Claims
    • What Causes Autism?
    • Additional Resources
    • Site Info & Feedback >
      • About the Website
      • ASE FAQ
      • Survey
      • Contact Us
      • Make a Submission
  • Our Blog
    • On Self-Advocacy
    • Trouble with Changes
    • Smoothing Transitions
    • Autism Speaks
    • Vaccines
    • Infantilization
    • Her Autism is Worsening
    • Stimming
  • Autism Tutoring

To The Woman Who Pitied Me for Having an Autistic Child: Happiness Comes in Many Forms

12/31/2014

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Picture
Image is of my mom, my sister and me splashing in a creek, undeniably happy. Our mother had waded in under the condition that we under no circumstances get her wet. Given that she was dealing with a seven year old and a four year old at the time, though...well, it was just too tempting. In the photo my sister and I are dancing with glee at having partially pulled our mother into the water. Mom? Well, she can't stop laughing. At the bottom of the photo I've written, "Happiness comes in all shapes and sizes." Because our life was certainly rather unorthodox. And yes, sometimes things were hard. But other times, like this one, they were really, really awesome. I'm not saying all parents of autistic children view their lives as happy ones, but ours certainly has been. Stick with me, the way the picture ties into the story is going to make sense in just a bit.

To the Woman Who Pitied Me for Having an Autistic Child,

First of all, I want to start this by thanking you. I’ll admit, every time I take a child who’s on the spectrum to the movie theater, I’m always a little nervous about how my fellow movie-goers will react. You know, I met a wise mother of an autistic child a couple of years ago who told me that autistic children had just as much of a right to go places in the world as other children did. I admired this mother, and I have sought to practice her words. That said, it’s still not always easy dealing with the judgment of others, and I’ll be honest, I’m always a bit nervous that some theater-goer will complain or take me to task for bringing a child on the spectrum to the theater. 

Coming from that perspective, and given that today’s movie was a bit over (or perhaps under?) stimulating, leading to extra loud stimming, attempts to run out of the row and loudly playing pretend with popcorn (which, by the way, is super cool, but I doubt my fellow theater goers appreciated how awesome what they were hearing was), you can see why I might have been nervous that some tsk’ing person might come up to me afterwards and tell me I should have removed him from the theater.

But no such person came. Instead, you approached me after the movie as the child on the spectrum was telling me excitedly about the movie “Home”. You didn’t say much, simply tapped me lightly on the shoulder as you walked and as you passed me you whispered with tears in your voice, “Bless you.” It was literally only a second long interaction, but every bit of your voice was packed with utter sincerity. I had feared people approaching me with anger, but instead you came to me with compassion. And for that, I very much thank you. I truly wish there were more people like you in the world – people who viewed the world through a paradigm of love, rather than anger.

I’ll be honest – I was a bit speechless at first. There was so much I had to say, but either to keep our conversation hidden from the child in question or because you were busy with (presumably) your own family, by the time I turned around all I got was a glimpse of your face and then you were gone. Driven by the urge to say something, and at least acknowledge your kind intentions, I called at your back, “Thank you?” Yes, there was a question mark. And I suppose the question mark will have to contain everything that I had to leave unsaid at the time.

As you’ve read by now, I truly did mean the thank you. Your intentions were the best, and the world could always use more blessings. Yet, the question mark arrived from what the words and the tone of your voice and even your facial expression strongly and unmistakably conveyed: pity.

I appreciate your blessings, really I do. And I see where you’re coming from, having only witnessed the encounter on the surface. But allow me to explain what was really going on from my perspective.

In my view, I had just had an awesome time with two great kids I love dearly. I’m sure I looked a bit haggard – but that’s because I was fighting off a burgeoning migraine from the bright movie screen and loud speakers, not because of the kids. Sure, the child on the spectrum was a bit all over the place, and, yes, I did have to restrain him from running out of the aisle. But I loved watching the movie with him and his brother. Hearing his infectious belly laugh (I dare you to listen and not smile), watching him play pretend with pieces of popcorn of all things (which, as I said, is really cool – in case you didn’t know, playing pretend is something a lot of kids on the spectrum struggle with, and I will never tire of watching him do it), bouncing him on my legs and giving him bear hugs for sensory stimulation (which I thoroughly enjoyed doing), hearing him talk to the movie (which is something I actually worked hard to get him to do at home, not realizing that would generalize to the movie theater – hearing him ask those ‘wh-’ questions, though, I still have no regrets), it was all fantastic! 

So if your pity was for my migraine – thanks, I really needed it. But if it was for having an autistic child with me at the movies, as I suspect it was…then, no, I actually had a wonderful time. Happiness comes in all shapes and sizes, not to mention neurologies, and I have experienced few moments of happiness stronger than the time I spend with these two amazing children – our movie theater visits included.

Of course, after I thought this through, I realized that your blessings probably went far deeper than that. It was probably not about our movie theater experience at all, but the fact that I appeared to be a mother raising an autistic child. Here, I’m not in as good a position to speak from. You see, I’m not actually his mother. I was just caring for him and his brother for the day, while his papa rests and his mother is out of town. (The papa for whom the little one wanted to go to the grocery store and buy soup and Gatorade and flowers for to make him feel all better - yes, autistic children are more than capable of loving and caring for their parents, as this one utterly and completely does, and his parents more than return the sentiment.)

Still wanting to address this component of your good intentions, I turned to my own mother, who also raised an autistic child – my sister, Caley. And she backed my own instincts: at least in her view, there’s nothing to pity. Sure, things can be really, ridiculously hard at times. But they can also be really, ridiculously awesome, too. There seems to be this assumption that life with an autistic child cannot be a happy one - that it's a life worth pitying. But life with an autistic child is, well, life. There are ups and downs, like any other life, though they certainly seem to be a bit exaggerated at both ends. Though there are certainly more societal barriers to overcome, there is so much joy to be found in life that at least in my family’s experience the scale more than balances out. Your blessings are always appreciated. But your reasoning behind this particular one – well, that might have been based on inaccurate data. 

I still greatly appreciate your kind words, and do not wish to discourage you from greeting others with the same compassion that you showed me today. I know what most people’s impressions of what life is like having an autistic child are, and I know they’re pretty uniformly terrible. All I wanted to show you with this letter was, well, that things may not be what you might think.

Thank you again for your compassion.

Sincerely,

Creigh, AKA, the woman at the movie theater

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I'm Not a Burden & Neither Are You

7/11/2014

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A lot of people in the Autistic community and those who support the Autistic community often forget how the same issues that affect autistic people also affect other neurodiverse people. Many times neurodiverse people can feel like they're a burden because they're made to feel that way by their society, culture, peers, etc. What can make it worse is that sometimes being neurodiverse may mean that we contribute to society in different ways. 

Unfortunately, many in society do not see our contributions as being contributions. You don't need a job to contribute to the world. You can contribute just by being there, by giving a smile, by teaching society how to think and understand differences, by helping give society a purpose. 

People need to remember to not let society say that these aren't contributions. People need to remember that even if they contribute in different ways than what society normally talks about, that is still a contribution and they should not feel like a burden. And those who are neurotypical should recognize these contributions and try to help society as a whole see them, too. And make sure to confront the idea that contributing differently makes you a burden.

-Caley

[Post dictated by Caley, transcribed by Creigh]
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Presuming Competence: What Autism Professionals Need to Know

5/26/2014

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Just because we’re Autistic and we’re not supposed to be able to read things, that doesn’t mean we can’t tell that you’re presuming our incompetence. I had to go to a lot of so-called “professionals” when I was younger. They would spend our lessons teaching us using “happy faces” and “sad faces” and asking us which was appropriate for the time. It was incredibly boring, and I knew which was which very easily, but they never moved on. I was in elementary school the first time I ran into that exercise, and they were still using the same thing on me when I was in high school. 

I also was constantly assumed to be a parent of an autistic person, as opposed to an autistic adult, when I interacted with autism organizations. I remember I got in contact with an autism organization, which I'm choosing not to identify. I had been forced to get into contact with them when I talked to professionals asking them for help dealing with an issue and they assumed the fact I was autistic was at the root of my problems, even though I kept telling them again and again that wasn’t what I was having a problem with. When the representative called me back, they were asking me about “my child” the entire time. “Are you the parent of Caley?” they asked me. I just hung up, because I didn’t know how in the world I could respond to that. Apparently it was assumed that an autistic person would not be competent enough to make the phone call. 

A year later, I had another run in with the same organization, having endeavored to give them another chance. When I asked for help, they assumed I was asking about volunteering opportunities, not asking for help for myself. It was assumed that a university student could not be autistic. When I saw the puzzle piece logo, which was on all of their material, I told them that I found the puzzle piece logo to be offensive. I said, “I’m a person, not a puzzle.” The representative told me, “I know, but our director insists upon it.” Once again, I had to cut off contact, and didn’t get the help I needed.

When I was getting help from a governmental organization for disabled people, they told me I had to take an IQ test because they were going to be giving me help going to college and wanted to see my job aptitude. Prior to this point, repeatedly the jobs they were suggesting for me were very basic skilled, the sorts you learn at vocational schools as opposed to college. When I asked how high the scale could go on the test they were giving me, they realized they didn’t have an IQ test that went into above average. I had to come back another day for a test that could measure me properly. Apparently disabled people aren’t expected to be intelligent. 

At the autism support group I accompanied my family to, parents basically got together, talked about how horrible it was to have autistic children in my hearing and all the hearing of all the other autistic children and adults there. It led me to feel like I was a burden; I was told I was a lot of extra work and I wasn’t worth the work because I wasn’t a normal child. Not explicitly, but it’s basically what they were saying a lot. I left there hurt, having heard that I needed a cure, which made me feel like there was something wrong with me being who I am. The autism support group apparently wasn’t intended to support autistic people.

At the social skills group, we were all shoved into the same room regardless of age or skill level. We were made to repeat stupid scripts again and again. It was annoying. Because I’m not stupid, but they were treating me like I was stupid.

All of these experiences were very othering, too. Out of these experiences, the support group stands out as the worst offender, one which I was exposed to again and again and again. "Normal" kids' parents don't have support groups. The social skills group was the same; "normal" kids aren't expected to rehearse the same conversation over and over again. Normal kids aren't treated as though they're stupid. But these experiences are far too common for autistic children.

That’s it. Remember that we’re here and please presume competence, because if you don’t, I’ll presume you’re not a competent professional.

-Caley

Note: This post was dictated to me, Creigh, and I typed it all, since as previously mentioned Caley has trouble getting her thoughts out when writing. We also worked together on editing for grammar and flow, but the words are all Caley's.
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No deadlines on progress

5/14/2014

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Originally published April 23rd

Too often we assign deadlines to developmental milestones, and when an autistic child fails to meet one, we fret and worry about their future. My own family was certainly not immune to this. I can tell you that Caley didn't start reading "on time", and I remember my mom and dad talking about it in hushed, worried voices. 

At the time I was only an elementary schooler myself and I reassured them confidently, "Don't worry! Caley's just like me - I didn't read well at first, either, but the summer of third grade I bloomed." Lo and behold, at about that same timeline, Caley started reading. (The impetus, if you're interested in knowing, was discovering her first Harry Potter book - Caley says it's the first time she learned that reading could actually be interesting!) When she started I remember gleefully telling them, "See! I told you so!" 

Why did I correctly predict that while my parents didn't? You could chalk it up to luck, but I think there was more to it than that, because that is one example of a long string of similar incidents. I think the key lies in the fact that I was blessedly ignorant of all these "deadlines" and negative narratives about autism because without them to cloud my vision, I could often see Caley's actual capabilities better than others.

Artificial deadlines are just that, artificial. Kids on the spectrum, and for that matter, all kids, are all on their own schedules, and just because they don't start doing something "on time" doesn't mean they never will. As Jess over at Diary of a Mom said today, "There are no deadlines on progress." And that's just so, so true.

-Creigh



The article that inspired this: http://adiaryofamom.wordpress.com/2013/06/05/rethinking-functional-behavior-and-the-tyrrany-of-made-up-deadlines/
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Poem

4/6/2014

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Originally posted 4/5/14

Autism Understanding/Acceptance Day 3:

Patricia posted this earlier and I thought it to be such an eye-opening poem that I wanted to share it because it shows the dual narrative of how we refer to neurotypical vs autistic behaviors in different lights. The double standard quickly becomes clear, and the artifical divide between our two communities still clearer.

The Language of Us and Them, By Mayer Shevin

We like things.
They fixate on objects.

We try to make friends.
They display attention-seeking behaviors.

We take a break.
They display off-task behavior.

We stand up for ourselves.
They are non-compliant.

We have hobbies.
They self-stim.

We choose our friends wisely.
They display poor peer socialization.

We persevere.
They perseverate.

We love people.
They have dependencies on people.

We go for walks.
They run away.

We insist.
They tantrum.

We change our minds.
They are disoriented and have short attention spans.

We are talented.
They have splinter skills.

We are human.
They are…….?
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I Cannot Call My Sister Cute: Autism and Infantilization

2/28/2014

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Picture
I cannot call my sister cute. That’s not because she never does anything cute. In fact, when she wears her frog beanie or hugs her plush dinosaur – things that would make even Voldemort look adorable – sometimes I slip up and I tell her, Caley you look so cute!

And she flinches, as though I’d just mortally insulted her. And in Caley’s world, the world of people with autism, I have. Because words are weapons, and even the sweetest sounding ones can cut, can be used to demean and diminish those they target. Cute is one of the words that you’d never think of as offensive, but Caley would rather I used any other four letter word around her…any one but that one.

Let me show you what I mean. Before Caley came to college, I let her stay in my dorm room for a while to dip her toes into the college experience. While she was staying with me, an acquaintance came by and spotted Caley. People can generally tell that something's ‘different’ about Caley, and often guess it has something to do with a disability, although they can't quite put their finger on what that disability is. This acquaintance was apparently one of these people and when she determined Caley was ‘different’ she adapted her own demeanor towards Caley accordingly.

When she finally left the room, I was left with a very odd sensation. Something felt very wrong and weird about the interaction I'd just seen, but I couldn't quite label what it was. After a lifetime of defending Caley from peers who meant her harm, verbally or otherwise, I’d gotten pretty good at determining subtle undertones of anger, taunting, and verbal barbs. But try as I might, I couldn’t find a single instance of any of those in her visit. In fact, my acquaintance had been very nice – even saccharinely so – to Caley. Why, then, was I left with a bad taste in my mouth? Finally, I figured it out.

My acquaintance had treated Caley like she was a small child. As soon as she’d gathered enough data to dump Caley into her mental ‘disabled’ category, my acquaintance had immediately switched to baby speech. She’d spoken very slowly, exaggerating every word, dumbed down her vocabulary, and reacted with over-acted enthusiasm to every phrase that came out of Caley's mouth. At one point, she literally patted Caley on the head. And, what's more, every few sentences or so, my acquaintance would look up at me with a bright smile and utter that damning phrase, "Your sister's so cute!"

Despite knowing that Caley was going to be coming to the Honors college next year, and therefore quite smart, upon sensing that vague feeling of disability she'd immediately down-graded her view of Caley's intelligence and maturity all the way down to that of a 5 year old. And in this instance, as in many, this ableist-fueled demotion was encapsulated by one word: “cute.”

This is but one example of a deluge of such well-intended but nonetheless offensive occurrences that Caley has dealt with her entire life. Classmates, teachers, relatives, random passers-by in the grocery store, one of the first things they exclaim when they meet her is “You’re so cute!” (or worse, they’ll judge her as not competent enough to interact with them and turn to our mother or myself instead and tell us how cute Caley is).

Cute is a dirty word in our family. But it doesn’t have to be. You see, the only things that make that word as negative as it is the fact that it reflects a broader societal narrative. And that narrative is that people who are disabled, whether due to autism or otherwise, are inherently not competent. If you change the narrative, you change the connotation of the word and all of a sudden I can tell my sister that she really does look cute in that frog beanie without making an implication about her competence. 

I guess what I’m saying is, when we meet someone with a disability, we all need to presume competence. I’m not saying we shouldn’t give accommodations when they’re needed. We should. But when it comes to interacting with people with disabilities, we should judge based on the person in front of us instead of based on stereotypes, talk to the person instead of about them, and address them with the respect that someone their age – or even better, any human being – deserves. 

Caley’s got a sticker stuck to the door of her bedroom which reads, “When you see, meet, or think about a person with a disability, PRESUME COMPETENCE.” She told me that she put it there as a reminder to herself that she is a competent human being, despite the narrative that tells her otherwise, but let it be a reminder to all of us now.

When you meet someone with a disability, presume competence.

#presumecompetence #differentnotless

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    About Creigh

    I'm a college student who grew up with my Autistic younger sister, Caley. I've got a bachelor's degree in Psychology and I'm currently studying for my Master's in Speech Language Pathology.

    Neither of those, however, have given me an understanding of autism. All of my understanding comes from learning from the many autistic people that I know. As a result, I have a very different outlook on autism than most, and a burning desire to tell the world what I've learned. This blog is one of the many areas in which I attempt to do that.


    *Note, none of these make me a professional, so advice I give is not professional advice.

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    Starting about in March 2014, all of these posts are originally published on Autism Spectrum Explained's Facebook page, and later reposted here for archiving purposes and easy access for ASE readers, including those who don't use Facebook. 

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