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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

People Thinking I'm Autistic

9/28/2014

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So, I was sitting with some of my friends yesterday and we were talking about autism, specifically how parents and siblings of autistic people are more likely to be on the spectrum, or at least broader autism phenotype, themselves. I made it clear that it was a safe space to ask questions, that there were no ‘dumb questions’ and anything and everything was on the table. And in that space one of them asked me a very thought provoking question:

Does it bother me that because I’m a sister of an Autistic person people are more likely to think I might be autistic, too?

I told her, no, it didn’t bother me, and we carried on with our conversation. But something about the question stuck with me and I kept thinking about it well into the night. When something sticks with me like that, that’s when I know it’s post-worthy, so I got my friend’s generous permission to share her question and my full response here.

You see, I realized that had you asked me this very same question two or three years ago, you would have received a very different answer. 

Back then I would have told you that, you know, I wouldn’t really mind it so much if people thought I had Asperger’s. But, you know, Asperger’s and autism are really different, I would have told you. I would have assured you of the intelligence differences between the two groups, the communication differences, told you that people with Asperger’s and autistic people are as different as night and day. So there’s no way anyone could ever think that I was actually autistic, I would have said.

I would have been very, very wrong on a lot of counts. For one thing, the intelligence gap between Asperger’s and autism is over-hyped. There are no intelligence requirements to be diagnosed with one as opposed to the other, people with the diagnosis of classic autism can be as smart as or smarter than people with the previous diagnosis of Asperger’s, even by traditional IQ tests. And if though people with classic autism diagnoses do often test lower than people with Asperger’s diagnoses on traditional IQ tests, on other intelligence tests more suited to people on the spectrum that gap disappears. 

At the time I would also have told you that people with Asperger’s are more ‘high functioning’ than people with classic autism. I would have also been wrong on that count (and wrong to use functioning labels in the first place). It turns out that people with those two once-separate diagnoses aren’t so different after all. In fact, the use of the two labels and false portrayals of how different they are (they aren’t) has led to artificial divides within the autism spectrum community. It’s also encouraged the “not like my child” attitude many non-autistic people have professed when reading the words of adults on the spectrum. “Oh, he has Asperger’s, what he’s saying doesn’t apply to my classically autistic child.” As you can see, the divides and misconceptions this creates are toxic. (For more on that, check out this post.)

So, now that we’ve established what kind of answer I would have given two years ago, and how very wrong it was, how would I respond now if someone asked me if I mind people thinking I’m autistic? The short answer, which I gave, is that I don’t mind. But here’s the longer answer.

I’d probably take it as a compliment. I think the reason people take the idea of being autistic as an insult is that, for one thing, they don’t know much about autism, and for another, they only know the deficits associated with autism. Me, though, I see strengths. Many of my favorite people to talk to are consistently on the autism spectrum, and that’s for a reason. For one thing, they know a whole lot about their areas of interest, and it is ridiculously fun to be around someone who can speak with passion and knowledge about a subject. It’s hard for me to hang around with friends on the spectrum and not learn something, and I love that. With my friends on the spectrum we can skip the gossip and head straight into the parts of conversation I most enjoy.

Things are also generally more straightforward. We’re more honest with each other, I think. In the absence of being able to read expressions well, you have to communicate more openly about your feelings, and I like that. I don’t want to perpetuate the myth that autistic people can’t lie about things, because that’s just not true, but with my friends on the spectrum we kind of skip the silly societal rules and communicate more directly, which is nice. Yeah, that’s a lot of what people see as a deficit, ‘poor social skills’, but it can have positives, too, and I generally far prefer it.

People I know who are on the spectrum tend to be people that I admire, so being compared with them? Yeah, that’s a compliment.

What’s more, if someone thought I was on the spectrum, I would no longer confidently reassure them that they’re wrong to think that. I’d probably tell them that I personally thought I was broader autism phenotype (BAP) with an anxiety disorder, rather than being diagnosably autistic, but that I’ve had enough autistic friends mention that they thought I was on the spectrum to admit that they may well be right, which is why I generally just give a lower bar for my neurology, not an upper. (I say I’m at least BAP.) 

I think the absolute only thing I’d regret about someone thinking I was autistic would be the stigma and resulting discrimination that come along with that. (Which I’ve already experienced some of when a mother wouldn’t let me care for her child because she thought I was autistic) But that’s not me personally regretting being perceived as autistic, just regretting what people think that being autistic means.

So there it is, my answer. It’s a fair bit longer than I thought it was, but I’m satisfied with it. And I think it just goes to show how far a little bit of autism understanding can take you. I’m glad my friend asked the question.

Have any questions of your own for me on what it’s like to be a sibling? Leave them in the comments!

-Creigh

Picture reads: Does it bother me that because I'm a sister of an Autistic person people are more likely to think I might be autistic, too?
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New Website: Autistikids!

9/23/2014

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After months of work, I am INCREDIBLY excited to announce the official publishing of the Autistikids website, the awesomely amazing site which Patricia Gabe - an autism advocate, family member, and all around awesome person - created, and Caley and I assisted with. The most common reaction we've received when we've told people about the website has been "Why hasn't anyone made this before?"

Here's why. You know all those amazing autism blogs and YouTube videos and websites about autism with great autistic and parent ally voices that you've heard of but never had time to look through in depth? Autistikids has combed through them for you and highlighted some of those that best explain what it's like to be autistic and the things important to autistic people. From Emma's Hope Book, to Diary of a Mom, to Invisible Strings, to Tiny Grace Notes, to John Elder Robison and many, MANY more, Autistikids has collected snippets of their writings explaining a wide variety of autism related topics all in one place. (With permission, of course!) Everything from stimming to melt downs to school to self-advocacy...it's all there. 

In short, Autistikids is a way to quickly and easily connect people who are interested in learning about autism from a wide range of people who are on the spectrum, and some parent allies. And I might be a bit biased, but I think it's ridiculously awesome.

So go check it out! And give us your feedback! This is day one of the website going live, and we want to know what you think and how we can make the website even better!!!!! You can leave feedback in the comments section or, better yet, take the survey after you visit! I have no money to pay you with for doing so, but just imagine I'm sending you the best hug you've ever received - yes, I'm talking about an imaginary Caley-style hug, the type of hug that turns hugs into an art form.  In other words, I would be very grateful if you did so! Here's the survey and you can check out the website itself at this link:
http://www.autistikids.com/


Can you tell I'm excited about this?  

-Creigh
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Absolute Acceptance Zone

9/11/2014

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I can think of another place that fits Jess's description of the beauty of movement class. A place where Caley and I, both elementary schoolers, played spontaneous ring around the rosy with other children who were complete strangers. A place of absolute acceptance. A place of fun and love and warmth and understanding.

That place, for us, was therapy. Yes, that same place many kids complain - or even scream - about having to attend, and where most siblings beg not to be dragged along. We loved it. Not every aspect, of course. No matter what a therapist does, handwriting practice is still handwriting practice. But at therapy Caley and I could hang out with other kids with no fear of teasing or bullying. Our five best friends there had diagnoses ranging from autism to intellectual handicaps to cerebral palsy to just plain old neurotypical (another sibling who'd been brought along). But we didn't distinguish between any of them. We were all just kids, plain and simple.

In that waiting room, there was no such thing as disability, not in the social construct context. No one was teased for being weird or made fun of for...well, anything at all. Caley's first words to our friend V were, in fact, "I like your boots." Which were not boots at all, V explained, giggling. Turns out they were actually orthotic braces (which, I still remember, had the coolest pictures of fish on them). But at therapy we didn't think of these as marks of difference. We saw them as just part of being, which sometimes looked pretty cool.

I've written about it before (http://www.autismspectrumexplained.com/our-blog/on-therapy-friendships-arcade-tickets-and-acts-of-kindness) and I know I'll write about it again, because it was just SUCH a life-changing experience, the sort I wish for for everyone, the sort that helped inspire me to pursue a career as a therapist myself. 

Eventually insurance kicked Caley (and one of our other friends) out of therapy, but I will always remember how the beauty of the absolute acceptance there, and seek to recreate it wherever I go. Because every child deserves a space like that.

-Creigh
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Autism & Science Crash Course: Send Me Your Articles!

9/11/2014

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This past week, the headlines blazed variations of this: "EARLY INTERVENTION WITH BABIES MAY WARD OFF AUTISM". 

This is the kind of headline that people, particularly parents of children on the spectrum, encounter all the time. I read these articles, and I will tell you from a background in statistics and psychology that the vast majority of them, like the headline above, are really overblown and premature. Some of them, particularly those found on blogs, are downright false. But if you didn't have a deep background in research, experimental design, or statistical analysis, you'd never know it. Even in the most educated of people, such a background is rare, because few fields require it.

Thankfully I have a background in a field that does, psychology, and I want to help share the ability to evaluate scientific claims it's given me. Every time one of these major headlines comes out, I'm going to post it here. I'll teach you what to look for within the article, the red flags of insufficient evidence or something just plain made up, and the signs of a well made study. (I guarantee you, we will have much fewer opportunities to do the latter than the former.) 

And I extend the same offer to you. Every time one of you encounters an article, or even a blog post, which makes claims about science and autism and you have questions about, I want you to send them to me. And I'll post it here on the ASE page and break it down for you all, teaching you what to look for as I do. This is your chance to get a free resource (me) to analyze areas of concern for you, instead of having to sort through them yourself, and simply guess.

After doing several of these, I'll start challenging you all to tell me what you see and verifying (or correcting) your analysis. And after a short while, I'm quite confident that any of you who choose to participate will be able to assess most any claim thrown at you...and even then, if you run across one you have concerns about, feel free to send it to me and we'll run through it together.

A parent once told me that sorting through all the news information he saw about autism was 'like trying to drink water out of a fire hose.' I get it, really I do. And while I can't turn down the sheer quantity in the media, I can help you quickly and easily understand and analyze it. The question is, do you want to learn?

Like = I'm interested!

-Creigh

Note: This seems like a really good time to remind you all that I am not a professional. I've taken many statistics and research methods courses, and am just seeking to highlight some of the basic principles for you guys, not for the goal of giving advice or swaying opinions or even judging interventions, but for the goal of helping increase scientific literacy in a population that runs into the need for it frequently.


[Picture reads: The real cause of increasing autism prevalence? Below is a graph showing a near 1 for 1 increase in autism rates as organic food consumption increases. How could this be? And does it really mean that organic food causes autism? Well, that's something we're going to cover together.]

Picture
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On Anxiety and the Effort It Takes to Climb a Mountain and Make a Phone Call

9/8/2014

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This is going to be a very personal story…one not about autism, but so related to autism that it almost might as well be. You see, anxiety is very comorbid (commonly found alongside) with autism, to the point that anxiety disorders are the second most commonly diagnosed disorders in kids on the spectrum. Those of you who are on the spectrum or have children on the spectrum probably, unfortunately, already know this fact. So today’s personal story to help you understand people on the spectrum isn’t going to be from Caley’s viewpoint – it’s from mine. Because though I’m not necessarily autistic, I do most certainly have an anxiety disorder. (Caley did, however, assure me that much of what I wrote here she could have written herself.)

How do I know I have an anxiety disorder? After all, to my knowledge at least, unless I got a diagnosis as a child and wasn’t told about it, I have never been officially diagnosed with anything. Well, my wake-up call came one night when I was lying down to go to sleep. I couldn’t relax, couldn’t stop thinking about the news stories I’d heard about a boa constrictor killing a child in his bed, a sinkhole swallowing a man whole as he slept. And I had an aha! moment. And I suddenly realized that my levels of anxiety weren’t normal, that most people didn’t have those sorts of thoughts. But it took me decades to realize that.

Thinking back, it all became very clear. I suffered from nocturnal panic attacks (yes, in retrospect I figured out what they were) for years as a child. When I say goodbye to a loved one I always said it like it would be my last (not because of a nice philosophy, but because yes, I am truly worried it might be my last). And I have done battle with fear of flying for years now…and it’s not just being worried about the flight, it is, turbulence = going to die. I can’t watch movies without reading the spoilers for them first, because not knowing what’s coming next just causes me too much anxiety. Even with the spoilers, it’s still a stressful experience. And everyday tasks like just doing the dishes can become so stressful at times because of the anxiety that long-term deadlines causes me (and that does register as a long-term deadline, there is no specific time it has to be done by, but it does eventually need to be done) that they can require me to push incredibly hard just to complete that simple task.

I know none of this is logical, but my mind can’t really respond to logic when I’m battling anxiety. Ask anyone that knows me, and they’ll tell you I’m one of the most rational people that they know. But the part of my brain that is drowning in fear? Yeah, it’s not exactly able to listen to rational discussions.

I grew up battling anxiety for as long as I can remember. Even back in kindergarten, I remember it. I remember opening up my lunch box and seeing the BEAUTIFULLY made sandwich inside, which my mother had taken the time to cut out in the shape of a heart. I loved it when my mother did that. And then I looked around at the other kids’ sandwiches. None of them had hearts. Suddenly, I was anxious. Did having a heart shaped sandwich mean I was weird? Was it against the rules to have a heart shaped sandwich? What if the other kids teased me? What if I got in trouble with the teacher?

I ate my sandwich under the table, where no one could see.

And I experienced the same self-conception that multiple people on the spectrum have told me they relate to. I thought of myself as lazy. After all, how do you explain how I can’t manage to clean my room? Or how I can’t so much muster enough willpower to go and so much as boil some rice and cook up some chicken…or even microwave something for that matter. People told me I was lazy for these things, and I believed them. Because really, what else could explain that?

The funny thing was, though, I knew I was actually, in many areas of my life, one of the hardest working people I knew. My last semester of college I was a student leader for five different organizations and taking 22 credits of coursework – hard coursework at that, the hardest classes I took in college. And during that very semester I also created the Autism Spectrum Explained website. That didn’t gibe with laziness.

Yet, though I’m the same person who is so ‘hard working’ in some areas of my life, some days I don’t feel like I can even leave my apartment. Heck, some days I’m so anxious I don’t even feel like I can leave my bedroom. Cooking, cleaning, making phone calls, these are all ‘easy’ things that I can’t seem to manage to do on the same time line as others. But it has absolutely nothing to do with laziness, and absolutely everything to do with an anxiety disorder that can make these small tasks just about as ‘easy’ feeling as climbing 6000 stairs up a mountain might seem to you. (I’ve done the mountain, actually. Let me tell you, between the effort needed to climb that mountain and the effort I more often than not need to battle my anxiety to simply make a phone call, I would take the mountain any day.) It’s not like this all the time. In fact, in my life outside of home, I don’t tend to have nearly such disabling anxiety. (Although it is always there. Always.) But it is like that a lot.

I'm not lazy. I have a disorder which makes even 'easy' things ridiculously hard at times. I can see how someone outside looking in might misidentify that as laziness, but now I know that it's not.

Within the past year, I’ve been making more autistic friends who also struggle with anxiety. Talking to them was like looking at myself in the mirror. As I talked to them and gave them advice from personal experience, I also opened up about myself and my anxiety for probably the first time ever. And it’s been such a relief, such a journey of greater self-acceptance and self-understanding. Because when you don’t realize that you have a disorder, you blame yourself. Because if you’re not able to do what others do, and you don’t know why that is, yeah, you’re going to blame yourself. 

And that is exactly what I did. I hurled criticisms at myself – lazy, silly, ditzy (yes, the ‘ditziness’ is anxiety related – it’s hard for your mind not to be a bit scattered when you’re worrying about your to-do list, your family, that email, your grades, whether or not you locked your car…you get the idea.), what have you. And I believed those things about myself. But when I started talking to friends who struggle with anxiety, my friends on the spectrum? I was able to finally understand myself, like looking at one of those drawings with a hidden picture that, once you see it, you can’t believe you didn’t realize it was there all along.

What’s more, because they get it I actually feel less anxiety about interacting with these friends. Because if I can’t answer an email for months because I am just drowning in way too much anxiety to be able to reply, THEY GET IT. If I tell them how danged hard it was just for me to leave my room that day, THEY’VE BEEN THERE. And even if they haven’t, they have empathy, because they know what it’s like to struggle with anxiety. And it feels so, SO good to be able to be honest about how ridiculously hard I have to fight some days, to be able to share the joy of having successfully done something ‘small’ that was just causing SO much anxiety for me and not have the person look at me with those eyes that say “So what?” or tease me because “That’s so easy!” The only way you get to say that was easy is if you think climbing 6000 steps up a mountain is easy. Because that’s what I just did. 

There is not going to be a ‘this is the way to fight anxiety’ kind of post. Because one of the things I’ve learned is, there is no one way, and no way works for everyone. When I’m dealing with anxiety, I have to push through or else is just continues to get worse. Of course, I am ALWAYS having to push to some extent, even when I so much as put a load of laundry in the washer (long term deadline). When you have to keep pushing CONSTANTLY, even low level, sometimes you get to the point where you can’t push anymore. That’s when I run into my biggest problems, because that leads to putting something off, which leads to worse anxiety, which leads to putting it off more, which worsens the anxiety…you get the idea. Every time I take so much as a small break from pushing, I really have to pay for it and push harder later. (This is not license to push me to do things for those of you who know me, by the way. The best way to help me is through support and understanding, like my friends on the spectrum do, not by pushing me – I know how to do that myself.)

But other people are the exact opposite. The more she pushes, the harder things get for Caley. And unlike me, where the longer I let a fear sit unchallenged, the worse it gets, if she simply leaves a fear alone for long enough it will go extinct. Caley and I have a lot of the exact same fears – it comes of growing up in the exact same environment, I guess. But when I see something I’m afraid of, whether it be a terrible thunderstorm or a flight or what have you, I try to push myself to do it, because I know that is my path forward to healing. When Caley sees it, though, she knows herself, and she knows not to push. I know not to push her, because though pushing works for me, it’s not the path that works for Caley. And both of our mutual fears from childhood have become more manageable over time, though we both took completely distinct paths to get there.

This is not going to be an uplifting post and I cannot tell you a cure for anxiety disorders, though I wish I could because I’d take one in a heartbeat. But that wasn’t the point here. The point was to foster empathy. To help those of you who do not struggle with anxiety understand those who do – to show you how anxiety can make a ‘small task’ into a 5,000 foot tall mountain. And, for those of you who do struggle, I hope this post has helped you feel less alone.

-Creigh

[Picture was taken on 泰山 (Mount Tai), one of the five great mountains of China, from a vantage point looking up the mountain at an untold number of steps. I took it while I was climbing up those thousands of stairs...and I assure you, the ones seen in the photo are actually a very small proportion of the total.]
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People, Not Puzzles

9/5/2014

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Caley hates the puzzle piece autism logo. Me, I don't think I dislike the puzzle idea itself, but I do strongly dislike pretty much everything it's being used to connote. And it REALLY bothers me that, though many autistic people have reported that they find it hurtful, organizations continue to use it. 

And it's not always an issue of using the logo without knowing how hurtful it is. A lot of autism organizations are aware of that people have reported it hurtful, and yet they still use that logo, and that bothers me most of all. Caley once went to a large autism organization seeking aid, only to find that their informational table was plastered with puzzle pieces. She said that as an Autistic person, she found the puzzle piece logo to be hurtful. She said, "I'm a person, not a puzzle." And they replied, "Oh, we know a lot of autistic people find it hurtful, but we have to use it." 

Caley was SO upset to hear that this organization that purportedly stood for autistic people used a logo that they themselves KNEW many autistic people found hurtful that she had to walk away. That day, and to this day, she did not get the help that she needed from the organization, because they had hurt her. 

Yes, I realize you can't change your logo just because one person doesn't like it, but this isn't one person, this is scores upon scores of people who actively find it hurtful. And yet, it's still used. And that fact? That fact really, REALLY upsets me. 

So if you're trying to help autistic people, please, PLEASE use another symbol. The infinity spectrum is the commonly accepted alternative, if you're looking for one. But don't use, or if you can avoid it, even share anything with a puzzle piece. I can tell you Caley cringes every time she sees one, turning an attempt to help into something very hurtful, and you know what? She's not alone. So if you're looking to help autistic people, use a different symbol. And when an autistic person tells you something is hurtful, please, PLEASE listen.


-Creigh

Further Reading:
Judy Endow's Post Goodnight Autism Puzzle Pieces
http://ollibean.com/2014/04/04/goodnight-autism-puzzle-pieces/

A beautiful picture of Autistic advocates protesting...well, a lot of things, but puzzle piece logos among them
http://2.bp.blogspot.com/_VyorhzF_el4/S89bae-bUKI/AAAAAAAAAH4/Y2hzkNFMpj0/s1600/group1.jpg

I'm a Person, Not a Puzzle (shows the alternative the autistic community has offered to the puzzle piece, the infinity spectrum)
http://chaoticidealism.livejournal.com/32509.html

Also, those of you who also liked his page may note that this post heavily drew from a comment I left on Invisible Strings's post about his own feelings on the puzzle piece logo. Awesome page, if you haven't liked it yet, I highly recommend doing so!

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I am not an Autism Professional

9/5/2014

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I am not an Autism Professional

In fact, I’m not any kind of professional. Neither is Caley, for that matter.

Why am I telling you this? Well, for one thing, I’m worried you may get the wrong impression. Though that fact is literally written at the bottom of every page of our website, in the side bar on the blog, and the about section of the Facebook page…the truth is, many of you may never read those, not because they aren’t plastered everywhere I can put them, but many of you readers solely know us from Facebook and really, how many people actually read the About sections? (I’ll be the first to admit, I never do.)

But more than that, I’m telling you this because I had a sobering conversation with a professor/mentor/super awesome wise-advice-giving person who talked to me about…well, a lot of things, actually, but on the importance of caution when giving any kind of advice and on my responsibilities as a graduate student clinician, among many things. And it was a wake-up call that made me see the page in a new light, one I’m very grateful for.

When I first started blogging on the ASE Facebook page (and reposting the blog posts on the website), I never thought it would go anywhere. To the first couple of people who suggested making it, I scoffed. I said, who’d want to read what I’d have to write? And honestly, would I even have enough material to write about? Well, the answers to those questions have turned out to be almost 500 people (wow!), as of this posting, and material to spare.

I first started out with family and friends – basically all I did was take all the posts about autism and interesting links I was posting on my personal profile and start putting them here, and invited those friends and family who’d commented and liked them on my profile to like ASE and see them here instead. That’s really what it was initially, and I never really expected people not biased by family relationships or friendship to find it interesting.

But you guys did like it (you all are awesome!), and I’m so grateful for that, because I truly and deeply believe that the more people read posts presenting the autistic perspective, posts that promote understanding and acceptance, the better the world will be for people on the spectrum. And that really is what all of us are working towards. Yes, every single one of us, even those of you who never even met anyone autistic – because you do your own part to work towards that world with every post you read.

Yet with all of you (super amazing!) followers comes a lot of responsibility, and a lot of possibilities for misunderstanding. So I’m going to be very, VERY clear here: I am not a professional. I am not a doctor, not a lawyer, not a psychologist, not a behavior analyst, not a speech language pathologist. For that matter, as I’m in graduate school now, I’m not even a nanny any more. I am not any kind of professional. Any and all perspectives or advice I share come from personal experience and nothing more.

What is my background? Well, I've got a bachelor's degree in Psychology, completed a post-baccalaureate program in Communication Sciences and Disorders (CSD), and I'm currently studying for my Master's in CSD (which will lead to a career as a speech pathologist). Absolutely none of those, however, have given me an understanding of autism. 

Instead, all of my understanding comes from learning from the many autistic people, children and adults alike, that I know virtually and in person. I am an elder sister to an amazingly awesome Autistic woman, my sister Caley. Simply being related to her taught me very little about autism (this isn’t the kind of thing that works by osmosis), but actively seeking out her opinion and learning from her has taught me so much. In addition, I’m almost certainly at least Broader Autism Phenotype (BAP) with a lot of anxiety, and all my autistic friends think I’m autistic. On that count, I honestly don’t know for sure, but what I do know is that I do connect on a personal level to the words and experiences of autistics more than most, and that this connection helps me to better understand and convey autistic experiences. 

Being an active member of WrongPlanet, the discussion forum mainly for adults on the spectrum, has also taught me so much about many autistic people’s perspectives. And I got the caregiver perspective from being a former nanny and babysitter to children on the spectrum. I’m also a friend to people on and off the spectrum, and I’ll admit I connect much more quickly with those on it. Even my free time is spent actively seeking out and soaking up writings and videos from autistic people. And, yeah, I would put ‘autism’ under the special interests category for me, so I do a lot of seeking.

Sister. Friend. Caregiver. Broader Autism Phenotype. These are the perspectives I am writing from, and these areas are where any and all understanding I have comes from. Those things and those alone - all from personal experience and from learning from the personal experiences of others. So all that is to say that if you’re looking for professional advice, look elsewhere. But if you’re looking for the perspectives of a sister duo with a whole lot of autism-related experiences…well, you’ve come to the right place.

-Creigh
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Response to a Comment

9/4/2014

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So, there was a comment on a Diary of a Mom post (I swear, it's like that page is my second Facebook home) where someone asked for opinions on qualities that make for good special ed teachers. I read a lot of mentions on respecting what the parent says about the child...I read significantly fewer mentions of respecting what the child themselves communicates. Having read all that, here is what I wrote:

"I would like to add, speaking from personal experience as a family member only, respect for the kids themselves. Respect for parents is important in of itself, but that means little if you don't respect the child, too. If I made a list, presuming competence, respect (all around for everyone), and acceptance would make the top three. You'd be surprised how much that child is picking up - my sister is Autistic and has written some posts about the way people treated her when she was a child and even currently. [Note: This is the post I was thinking about when I wrote the comment:http://www.autismspectrumexplained.com/our-blog/presuming-competence-what-autism-professionals-need-to-know
] I swear, if those well-meaninged autism professionals and autism parents could have seen what was going on through her eyes, they would never have acted as they did...

And that, I think, is it. Empathy. It is incredibly ironic, I know, because consistently we're told that autistic people lack empathy...and yet the autistic people I know tend to have too MUCH empathy, not too little, and the people I am always begging for empathy and understanding from are consistently neurotypical. Empathy really is the key. Try to see the world through their eyes."

Caley read and approved this post and thoroughly agreed. She said that we should never forget to listen to the child in question, particularly when it comes to sensory issues (which seems to be an especially big empathy problem, as Caley and I have experienced: http://www.autismspectrumexplained.com/our-blog/a-tale-of-two-sensitivities). She said "Just because you can't feel how uncomfortable the clothing is trust what the child says. Just because you don't smell/hear something don't think the child is lying. Don't get mad at us for overreacting to sounds, etc to us it often isn't a an overreaction."

I guess you can distill those words done into some basic qualities that, from personal experience, Caley and I have grown to see as the most important. Accept. Listen. Respect. Presume Competence. And above all, have empathy. This list doesn't just apply to special education teachers working with autistic students, or even autism professionals working with students. These are the keys for everyone interacting with an autistic person, or any disabled person, or, even, for that matter, any human being. Now what we have to do is make sure that list is put into practice...

-Creigh
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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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